FALL 2022 NIKO BOSKOVIC - LETTERBOARDING LEADER ETHAN NAGY - ADVOCATE FOR AAC CLUB EMU - CLUB EVERYONE, ME AND U A DAY IN THE LIFE OF DR. ANSON SERVICE PAVING THE PATH TO MENTAL WELLBEING #ASKINGAUTISTICS - ARE YOU HYPERLEXIC? MICHELE MANLY - EMPLOYMENT EMPOWERMENT TM FREE SpectrumLife magazine OREGON and WASHINGTON’S PREMIER MAGAZINE FOR AUTISM COMMUNITIES
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Ideal for home, therapy clinics, and ”safe spaces” at school and other group settings.
ADVOCACY
Michele Manly - Employment Empowerment Stories from the Spectrum: Michele Manly
Creating More Equitable Spaces A sense of belonging for all students.
A Day in the Life of Dr. Anson Service Mental health professional, neurodivergent advocate, family man.
From the Publisher Transition brings transformation.
Niko Boskovic - Letterboarding Leader A passionate advocate for nonspeaking autistics.
Ethan Nagy, Advocate for AAC All nonspeakers should have access to communication.
Should We Stop Using ‘High’ and ‘Low’ Functioning Labels?
Club EMU, Everyone, Me and U Building friendships, offering support, advocating together.
Invest in autistic potential during Give More 24!
10 Years of Specialty Athletic Training Relationships are the heart of our service.
THERAPY
Spectrum Life Resource Directory Online support for the autism community.
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Focus on individual support needs instead.
HEALTH + WELLNESS
What to Put in Your Toolbox Before Starting the New School Year Remembering your ABC’s and D!
LIFESPAN
RECREATION
#AskingAutistics with Lyric Holmans Are you hyperlexic?
EDUCATION
Paving the Path to Mental Wellbeing How Occupational Therapists can provide support.
contents FALL 2022 www. spectrumlife.org 29 32 54 41 48 4 16 21 22 44 3 5 24 35 38
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Upcoming Autism Empowerment Events
NIKO BOSKOVIC - LETTERBOARDING LEADER
Giving Yourself Grace Reflections from Karen Krejcha.
Writing is Cathartic An interview with Meg Eden, neurodivergent author.
Aaron Blackwelder
Executive Director & Co-Founder: Autism Empowerment™
This reminded us that new people will always be joining our community, eager to find support and build relationships. There will also be people transitioning to different life stages, whether it be a change in schools, jobs, homes, or family dynamics. We are all lifelong learners. Giving Yourself Grace (page 21) is essential.
Editor: Spectrum Life Magazine™
As we are Paving the Path to Mental Wellbeing (page 41), Club EMU (page 29) offers support and friendship opportunities. 10 Years of Specialty Athletic Training (page 44) reminds us we are all works in progress.
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Karen Krejcha, Autism Empowerment, Publisher
Dave Born, Graphic Designer
Ask questions. Are you hyperlexic? (page 22) Should we stop using Functioning Labels? (page 14). How can we create More Equitable Spaces (page 38)? What are the ABC’s and D of starting the new school year right? (page 35).
FALL 2022 | VOLUME 12, ISSUE 3
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Whatever this season of your life holds, we appreciate you spending time with us and allowing us to join alongside you in your autism journey. May you know you are worthy. May you experience love and grace.
The community gathering was a huge success with over 300 people of all ages and abilities sharing connection. What struck us as particularly meaningful was meeting families whose newly diagnosed children had not been born when our last picnic happened in 2019.
Welcome to the Fall 2022 edition of Spectrum Life Magazine!
About two months ago, Autism Empowerment celebrated the return of our annual Autism Empowerment and Spectrum Life Summer Picnic, our first event since the COVID-19 pandemic began in 2020.
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SPECTRUM LIFE MAGAZINE TM A program of Autism Empowerment TM
THE PUBLISHER www. spectrumlife.org
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Starting in this issue, Spectrum Life Magazine has expanded to 56 pages. Although paper prices skyrocketed, we’re taking the risk because you’re worth it. Neurodiverse stories across our human spectrum are worth telling.
ON OUR COVER
Our cover features Niko Boskovic (page 7), a passionate advocate for the potential of nonspeaking autistics. He and Ethan Nagy (page 16) are young adult letterboarding leaders who are evolving the current narrative about the realities of being nonspeaking.
www.spectrumsmagazine.org4
Learn from other autistics. Delve into A Day in the Life of Dr. Anson Service (page 48), tap into why Meg Eden’s Writing is Cathartic (page 32), and sense the joy from Michele Manly (page 24) whose employment empowered her to home ownership.
Autism Empowerment makes no warranty, guarantee, endorsement or promotion of any service provider or therapy option listed in this publication or our websites: AutismEmpowerment.org and SpectrumLife.org. This is a free community magazine created as a courtesy to the public. Autism Empowerment cannot be held liable for any action or decision based upon information found in this publication or our websites. It is the responsibility of individuals to discuss any therapy or treatment option with their care team. Every effort is made to ensure accuracy and verify information, however readers using this information do so at their own risk. No part of this publication may be reproduced or transmitted without prior written consent from the publisher, Autism Empowerment. © 2022 All rights reserved.
Editorial Advisory Board:
Karen Krejcha
See Niko BoskovicLetterboarding Leader on page 7
Tara O’Gorman, MSW
Anson Service, Psy.D., LMHC Brian
Autism Empowerment
Laurie Drapela, Ph.D
Niko Boskovic is a passionate advocate for nonspeaking autistics.
Amy Donaldson, Ph.D, CCC-SLP
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Niko Boskovic - Letterboarding Leader .........................................................7 Should We Stop Using ‘High’ and ‘Low’ Functioning Labels? ......... 14 Ethan Nagy, Advocate for AAC .................................................................... 16 IN THIS SECTIONEMPOWERING CHANGE WITHIN THE AUTISM COMMUNITY advocacy
BoskovicLoretaofcourtesyPhoto
I am glad to share a little bit about me and what I am passionate about. My name is Niko Boskovic, and I am twenty-one years old. I am nonspeaking and use a letterboard to communicate. Inside of me are so many thoughts and ideas, dreams and fears, but it’s hard to spell it all out. So instead I write it all into my poems, which draw from the things I understand best: being autistic, my family, disability history, and Oregon’s amazing forests and coastal beaches.
How old were you when you were first diagnosed on the autism spectrum?
I was taking up so much of my parents’ time and money, and I couldn’t speak more than a few words.
I did this for forty hours each week for years. I also did Occupational Therapy (OT) and speech therapy with some very nice people who unfortunately couldn’t teach me to be a mouth talker. This is before iPads existed, so augmentative communication devices were expensive and not very user-friendly, and there was a huge waitlist to consult with the speech therapist insurance had referred us to.
What made this panel unique from all other self-advocacy panels I had seen before was that it included two passionate nonspeaking autistics. One was Matteo Musso. The other was Niko. It was the first time that I had ever seen anyone use a letterboard on stage to communicate and it was one of the most powerful and impactful autism presentations I’ve ever seen.
Niko is now a passionate young adult with many thoughts, stories and ideas to share. We’re thrilled to announce that starting this issue, he will be contributing regularly for Autism Empowerment and Spectrum Life Magazine. Here he shares some of his personal story with our readers.
Avoid ableism. Presume competence.
www. spectrumlife.org Continued on page 8 ADVOCACY
I had programs that made me imitate block structures, hold eye gazes for a certain number of sessions, and identify flashcards of animals, household products, people in the community, and other items. Over time, I saw the pattern that they valued: I had to repeat programs until I got at least seven responses correct out of ten over three days. Only then did the program move on to a new goal. It was pretty boring, and the only good thing about it was that in between drills we would play or cuddle or I would get to play with Medo, my teddy bear. When it was time to do another drill, I’d hand Medo over to the therapist, and she’d give him back to me after we did the drill ten times.
I had to do a lot of therapy as a child all the way up to my teens. Right after I was diagnosed, my mom set up a home program. She found a behavior consultant and got a couple students from the university down the street that the behavior consultant trained in leading therapy sessions with me.
I was three when my parents took me to be evaluated by the school system, and it was a few months later when I was evaluated by Kaiser’s autism experts. In both cases, I remember being asked by nice white women to stack blocks or to look at them or to point at a picture of the doggie versus the dinosaur. You can probably picture what it was like.
But I miss working and feeling respected for doing good work. Having a part-time job was really important to me and one of the things I looked forward to every week.
What you probably can’t picture is what my little three-year-old self was experiencing: the strange rooms, toys that I hadn’t seen before, people who didn’t smell like my parents talking to me and asking me to do things, the stress
Hello Niko! Please tell us a little bit about yourself.
I first saw Niko Boskovic at a national autism conference in Portland, Oregon in August 2017. He and I were there as panelists and autistic advocates. Niko’s panel occurred first and included a diverse range of teenagers from across the country.
I live in North Portland, and split my time between my parents’ houses. I graduated in 2019 with a regular diploma, and am taking classes through Portland Community College to get my Associate’s degree. The pandemic really closed my world down to my immediate family and one or two Personal Support Workers (PSWs) but I gave virtual school and socializing a try, and it wasn’t so bad!
I got very frustrated by needing to have all that therapy which wasn’t doing much else besides making me feel like I was broken.
By Karen Krejcha
rolling off my parents in waves of fear and sadness. I didn’t know what there was to be scared of, but I hated feeling their stress. A lot of it was people taking notes and talking to my parents. That‘s my strongest memory from being diagnosed.
How did being autistic impact your childhood years?
Along the way, I was pulled out of school and got to be home, which I appreciated since the year I was in kindergarten was my individual hell. My mom had enlisted the help of a friend who supported her during my first Individualized Education Program (IEP), and they were, and they were successful in getting me placed in a general education classroom.
7
Niko Boskovic - Letterboarding Leader Advocating for the Potential of Nonspeaking Autistics
That led me to being in a general education classroom within ten months, and it completely changed my life. But there was a lot of work along the way, and with every step, I got better at controlling my body and increasing my communication. Many school Speech-Language Pathologists (SLPs) tried different iPad apps over four years, but I really dislike the coldness and the glass screen. I find it impersonal and robotic-sounding.
How has letterboarding changed your life and your relationships with family?
However, when the school year started, I had to share a paraeducator with another student who needed bathroom breaks a lot, so I would often be unaided amidst 30 other students and two adults. Worst of all, the teacher made it very clear that she thought I didn’t belong there, and she was resentful of my mom’s involvement and questions about my progress.
Like so many autistic people, I also have anxiety which manifests as Obsessive Compulsive Disorder (OCD), and I have been seeing a great psychiatrist who oversees my meds. He suggested that I also add some OT so that I can learn techniques to reduce my anxiety when it flares up at work or in my daily life.
The letterboard may be slow, but I like how the other person can follow what I spell because the board is see-through. I’d like to practice using a wireless keyboard to eventually write my homework, but when I am on the move, a letterboard is super convenient, light in weight, can be bent, and won’t break down.
I have found a tremendous amount of freedom and independence thanks to the letterboard. It’s what got me into high school; it’s allowed me to publish my poetry; it has
As life is, my high school experience was pretty much the opposite of that year of kindergarten. I could communicate; I had my own paraeducator; I was in a school community which accepted me for who I was, and I had made a few good friends who letterboarded with me. Best of all, I was being challenged intellectually, and my teachers led discussions on social justice that appealed to me so much.
I have no issue with people calling me autistic – I prefer this, in fact – and if someone calls me a person with autism, I won’t really care. But please don’t associate me with the ableist label “severe autism” because it carries so much judgment and preconceived notions about nonspeaking autistics. All I want is to be accepted for who I am and that I have a say in how I live my life, just like you.
Do you have other coexisting disabilities or health conditions that impact your daily life?
Many autistics who are nonspeaking or minimally speaking have tried different forms of Augmentative and Alternative Communication (AAC) to communicate. What works best for you?
It was a fluke that I learned how to letterboard because my mom had gotten so tired of all the therapy and special diets she and my dad felt they needed to try. It was a point of contention with them, but because overseeing all of it fell on her shoulders, I imagine she really felt the weight of it. So when she found out there was going to be a letterboard training in Seattle, she figured we could stay with relatives and eat on the cheap while attending the training.
When people ask you how you identify in terms of autism or disability, what language do you prefer and what do you dislike?
a matter of fact. Maybe I don’t contribute as much conversation as others, but I listen along and enjoy it all the same.
They may react with confusion or become patronizing or worst of all, they might say something pitying to the other person, which often results in pissing them off and possibly a short lecture on ableism in the aisle of a grocery store.
When someone doesn’t know I use an alternative method of communicating, they usually direct questions to whoever I’m with and pretty much ignore me unless my behavior distracts them.
www. spectrumlife.org Niko Boskovic - Letterboarding Leader, continued from page 7 Continued on page 10
I have found that the most effective way to control the ways people see me is to letterboard everywhere I go. It’s a personal, political act which challenges all sorts of preconceived notions about nonspeaking autistics. It’s my way of taking up space in public and normalizing the use of alternative communication. It’s important that people be exposed to it so much that it’s barely noticed after a while and we find it may be seen as sign language for those of us who cannot reliably speak.
www.spectrumsmagazine.org8
It’s pretty interesting, actually, to meet people who know that I use a letterboard because I am included in the conversation as
That year was the reason why my parents chose to keep me home instead of relying on a system that was set up to segregate kids like me over time in self-contained classes for their education. Let’s be honest, special education is a system that is very separate and definitely not equal. I am fortunate to not have had to experience it.
I felt only one regret: that I couldn’t penetrate the social scene enough to find a girlfriend. Loneliness is something I live with every day, but I feel overall happy and fulfilled in my life right now.
The anxiety seems to run hot and cold depending on the minute of my day and how much I’ve had to deal with so far. But for the most part, when my days are predictable and consistent, I have an easier time of it, and I can save up my energy and flexibility for unanticipated situations.
What are some of the preconceived notions that people have when they meet you, and how do you work to dispel them?
I used to think that I would spend my life not being able to communicate anything more complicated than needing to use the bathroom or wanting a drink of water. Speech therapy was not a great experience and really frustrated me for making me say words which I simply couldn’t pronounce.
It was a lesson in how important it was to have a teacher who saw potential instead of burden in their disabled student.
“My goal has been to shed light on the realities of being nonspeaking.”
Photos courtesy of Loreta Boskovic
Responses seem to fall into two categories: 1) they evolve by taking firsthand experiences into account and centering those stories as lessons to learn from, or 2) they dismiss them as being fake or an example of manipulation of the autistic person, thus relying on ableist stereotypes to silence us.
In addition to your current advocacy, we are super excited to announce that starting in September 2022, you will also have a regular online blog for Autism Empowerment and Spectrum Life Magazine. What kinds of topics do you think you’ll be writing about?
Then there are common misconceptions about nonspeakers that are pretty harmful, like notions about our ability to empathize or take someone else’s perspective. We have been assigned a lot of hard-and-fast truths about autism that aren’t actually accurate, and I hope to help evolve the current narrative to be a little more representative of those of us who use letterboards to communicate.
I do wish more people were trained on how to do it like there were in high school, but the pandemic made it hard to find people who were interested in working as direct support workers. I also think it’s made it easier to connect with family, but in general, I don’t have a close relationship with extended family, so that’s not really a variable. I would love for them to be interested, but that’s a result of busy lives.
1010 www. spectrumlife.org
fostered my advocacy and made it possible for me to have a voice in decisions that affect my life. I can’t really picture my current life without the letterboard and how it opened the world to me. I used it on an airplane recently to order a meal, and relied on it to tell my mom that I wasn’t feeling well last week. It may not seem very independent, but when you haven’t had any method to communicate, the letterboard feels like the most freeing opportunity.
How someone can deny that I am competent and spelling on my own is bewildering to me. I can only respond with that age-old advice to “follow the money.” Do they work in a field that routinely talks over autistic people and purports to know what the “best practices” are? Is that person qualified to assess a disabled person’s intelligence? It’s not surprising to me that a lot of naysayers have little to no experience with augmentative communication or autistics who communicate using non-traditional means.
Some people out there tell parents that facilitated communication such as letterboarding is not legitimate despite many heartfelt stories from autistics to the contrary. So how do you address this to naysayers?
Niko
In that math class, we found an easy solution: another para swapped in for algebra, and it was great because she was a math geek and could think up ways to ask me questions which could be answered with a letterboard that she embellished with calculus symbols. After the teacher saw me getting assignments done with the other para, she stopped wondering about my abilities and started giving me harder questions.
I made the connection between the personal aspects of my life and how impacted it’s been by ableism when I was in high school. My school was very much focused on social justice issues, but I got the sense that disability and its intricate relationship with ableism hadn’t been considered by many to be a significant social justice topic.
Tell us about your advocacy work and your goals in helping support autistic people as well as those with other kinds of disabilities.
Since then, my goal has been to shed light on the realities of being nonspeaking; of having been made to undergo many of the most prescribed therapies for autistic children; of being authentic with who I am while acknowledging that my experiences are impacted by being a white male who doesn’t also face other barriers like racism or homophobia.
I can’t change their perceptions because they already think of me as incompetent, so I’ll keep on writing the way I write, and hopefully someday they will come around.
It’s important to me that I don’t represent myself as someone who speaks for the nonspeaking community. There are a lot of us! I encourage you to seek out their stories.
There are so many topics I am interested in exploring with you. For example, making friends with other people and dating is a topic of great interest to me because those social connections were all around me in high school, yet they were impacted by ableism and teen angst.
I am especially interested in hearing from parents of nonspeakers because there’s a lot I’d love to tell you that
I think this form of communication is threatening because it challenges the ableist narrative surrounding people like me. We now ask for equal time in describing what our experiences have been growing up, and they haven’t shown the most popular therapies out there in a very positive light. When someone has invested their professional life in helping others “overcome” their autism, it must be very disheartening to find out it wasn’t really beneficial to the recipient.
My classmates saw how much it took for me to take part in class, and over time, they learned more about my childhood. They became friends with me because they liked who I was and they identified with ways that I thought ableism could be addressed. Most of all, they shared their own struggles with mental health and prejudice, which reinforced the notion that we shared more in common than we had different; that at the root of it, we all just wanted to be accepted for all the ways we chose to face life’s challenges, irregardless of how those challenges manifested individually.
I have only had one instance of someone in an authority role disbelieving that I was not being prompted. She taught algebra, and had a hard time understanding why my paraeducator’s fear of math would impact my ability to answer questions. But it did, because the letterboarding experience is so reliant on a positive relationship between the speller and their communication partner. I rely on that person to stay calm and regulated so that they support me in being that way too. If someone is freaking out or is upset because their anxiety is revving up, it really affects my own anxiety level, and I have a hard time focusing.
Boskovic - Letterboarding Leader, continued from page 8
Continued on next page
I really mean it when I say how much I’d love to meet you and form some kind of social group where we can be letterboarding about topics that matter to us. Not our parents’ ideas of what topics could be useful, but ones that we come up with.
11www. spectrumlife.org
Karen Krejcha is the co-founder of Autism Empowerment, where she serves as Executive Director. She is the Editor of Spectrum Life Magazine and host of the Autism Empowerment Podcast. Karen was diagnosed on the autism spectrum in her 40s, after the diagnosis of her two children. She has been married to John for over30 years and is devoted to promoting a culture of acceptance and empowerment within autism communities and worldwide.
What advice do you have for parents whose autistic child is nonspeaking?
To say she returned from that presentation a changed person would be an understatement. She had hope for me instead of that worry that carried so heavily on her back. She realized that every bit of information about autism had been given to her by non-autistic people, so she changed her sources to be primarily neurodiverse. We’ve continued with this approach ever since, and it’s made such an impact on my life. We are all happier for it, and I wish more parents would switch where they get their information about the autistic experience.
What else is important for Spectrum Life Magazine readers to know?
Nothing that hasn’t been already covered in these questions. I am looking forward to working and advocating together!
What advice or words of encouragement do you have for other nonspeaking autistic people who are reading this article?
We are so observant of everything going on around us, yet there often is a tendency for parents and support providers to talk for us! It’s incredibly frustrating. So I don’t have advice, per se, but I would encourage you to keep trying to make yourself heard and to never stop trying to find a communication method that works best for you.
There are two things that made a huge impact on my life. First was learning to letterboard and being supported as I got fluent on it. The second was when my mom went to a presentation by an autistic woman named Karla Fisher who shared her experiences with sensory processing. I was around eleven years old, and sadly, she was the first autistic person my mom had ever met in the whole time since my diagnosis.
might shed light on why your child might be doing something in their autistic way that confuses you or causes you both stress. All told, I hope to share my experiences and help make our little corner of the U.S. a welcoming community for autistic people and their families.
Niko Boskovic - Letterboarding Leader, continued from page 10
1212 www. spectrumlife.org W h e r e v e r y o u i d e n t i f y i n y o u r a u t i s m j o u r n e y , A u t i s m E m p o w e r m e n t i s h e r e t o m e e t y o u a l o n g t h e w a y w i t h A c c e p t a n c e , E n r i c h m e n t , I n s p i r a t i o n , a n d E m p o w e r m e n t f o r t h e r o a d a h e a d . P l e a s e s u p p o r t A u t i s m E m p o w e r m e n t w i t h a c h a r i t a b l e g i f t d u r i n g G i v e M o r e 2 4 ! S e p t e m b e r 2 2 n d a t G i v e M o r e 2 4 . o r g P l e a s e i n v e s t i n o u r p o t e n t i a l & S p e c t r u m L i f e M a g a z i n e ! www.givemore24.org/organizations/autism-empowerment Early giving opens Sept. 12th
13www. spectrumlife.org • Special Needs Trust and Planning • Estate Planning • Special Education Law • Mediation 5200 SW Meadows Road, Suite 150 • Lake Oswego, Oregon 97035 Tel: (503) 726-1079 • www.lexemylaw.com Your law firm serving the specialcommunity.needsAlexandraS.CookAttorneylicensedinOregonandCalifornia Honesty • Respect • Compassion WHO WE ARE & WHAT WE DO: NWCAVE is a volunteer operated national 501(c)(3) nonprofit organization based in Vancouver, WA. We work to inform, educate, and prevent violence and exploitation against all people nationally and internationally, no matter race, nationality, religion, gender identity, or sexual orientation. OUR PROGRAMS & DIVISIONS: WA Says NO MORE Gift of LiftNO MORE Summit Missing Children's Division Dignity Clothing Program NW Women's Festival Conference Against Trafficking National Education & Training Institute Learn more at www.NWCAVE.org Multnomah County Intellectual and Developmental Disabilities Services Division (DDSD) is a part of a statewide services delivery system. We provide case management services to adults and children and help individuals and families choose and plan services and supports to live a healthy, safe and productive life. Services that may be available depending upon eligibility: Case Management IEP Assistance Family Support Employment Transportation to work Supported Living Residential Career Discovery In home Support for Children In home Support for Adults Want more 503https://multco.us/ddinformation?9886258
Unfortunately, the functioning labels remain and are still widely used by both the layperson and some professionals, but likely with the best of intentions. If you are still thinking about my comment about Members Only jackets being regrettable, be comforted that my father would side with you.
causing masking. It is plausible that these labels are based on neurotypical expectations, knowledge, and societal norms.
But as much as I would love to debate the fashion genius of the jacket’s shoulder loops (sarcasm), I would rather discuss how the terms “high functioning”, “low functioning”, and “severe autism” are considered harmful, shame-based labels, especially if one were to ask actual autistic individuals.
Continued on next page ADVOCACYADVOCACY
by Dr. Anson Service, Psy.D., LMHC aka Neurodivergent Doctor
Others labeled “low functioning” or “severely autistic” are denied opportunities they are entitled to, may face ableist attitudes, and may not be taken seriously as well. Additionally, the concept of high and low functioning regarding autism spectrum disorder suggests the concept of two extremes of a linear spectrum of abilities. One might say, “You’re high functioning,” or “low functioning,” but we rarely hear anything in between the two.
Should We Stop Using
If someone is identified as “high functioning,” some may appear relieved, almost humored, with visions and expectations of savantism or personality styles like Albert Einstein or Dan Aykroyd. Furthermore, those who are seen as “high functioning” and are talented and adept in certain ways run the risk of being treated like their skills are more of a party trick and they may be encouraged to “perform,” which smacks of dehumanization.
The 1980’s gifted us with some super rad hairstyles, denim on denim fashion, and Pac-Man. Regrettably, it also provided us with Members Only jackets, New Coke, and autism functioning labels. Fortunately, most of the things from the ’80s were phased out.
Some who struggle with certain activities of daily living who have been labeled “high functioning” have voiced frustration that their struggles are not taken seriously, have been denied accommodations or services, or are expected to be a savant.
‘High’ and ‘Low’ Functioning Labels?
1414 www. spectrumlife.org
Functioning labels were first introduced in the totally tubular ‘80s when a study used them to differentiate between autistic individuals with and without intellectual disabilities.
Additionally, the term “low functioning” also has a built-in bias against that person’s potential and abilities. A person labeled as such may not be awarded the same opportunities as someone who is labeled “high functioning.”
Focus on individual support needs instead.
In spite of their intentions, they tend to reflect what people perceive to see on the outside, such as how an autistic individual communicates or behaves in front of others. It is very “surface level” and promotes the use of trauma-
Rather than a linear concept with low to high, or even a color wheel concept of autism spectrum, consider a three-dimensional style representation of autism with various traits and features that are capable of movement that can change in intensity, duration, and frequency. Not every autistic person has each characteristic of autism, and characteristics can change, develop, or remit based on a multitude of factors.
Neurotypical Expectations
Conversely, the term “low functioning” may evoke a look of concern, confusion, or padded empathy in others. They may not know quite how to react and may even offer their apologies or condolences with, “Oh... I’m so sorry. I didn’t know,” as if they contracted “low functioning autism” like a terminal illness. We must also acknowledge the inferred shame the term “low functioning” may produce.
In both of these examples, simply referring to the person as “high or low functioning” would be inadequate and would be a disservice to them. By suggesting support needs and sticking to the facts appropriate to the situation, the people involved know what they need to know.
I have said many times to clients and friends alike that autism throws out the conventional rules, and we must make our own rules. What if we simply threw them out? What if we did not use labels to refer to how an autistic individual gets along in this world?
“I was told that some of you thought my tone of voice was aggressive or angry. I am autistic. I am not angry, but excited, and if you feel I have offended you, I am happy to talk about it.” Of course, we do not owe anybody any unnecessary explanations, but this is a possible response.
What then, may we use instead of “high and low functioning”?
We do not refer to neurotypical people as high or low functioning. I do not say that my neurotypical accountant is a “high functioning” person because she did my taxes correctly. You would not congratulate your grocery store checker for being “high functioning” for catching a discount that you missed.
It is also vital that we all make it safe for autistic people to be themselves without the labels. Just let Wendy be Wendy, or Arnie be Arnie. Don’t call awkward attention to things they do that are different, unless you know it will be received well and a positive experience for them. However, it can’t be any more awkward than those shoulder pads sewn into everything in the ‘80s.
For example, instead of saying, “I am a high functioning autistic... so don’t get butt hurt if you can’t figure ME out!” consider the following approach as an alternative.
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Much of the world sees autism as a disability and we live in a world that, intentionally or not, infers disabilities are shameful, bad, and to be pitied. Conversely, if a person masks or camouflages their differences, they tend to get a metaphorical or literal pat on the back because they behave in a more neurotypical manner, which often means they do not make neurotypical individuals feel uncomfortable.
Do we really need these labels, or have we merely been taught to make sense of the world using labels? These labels are far too simplistic for such a complicated condition.
Official Levels
Officially, when a person is professionally diagnosed with autism, they are assigned level 1, 2, or 3, rather than “High, Low, or Severe Functioning.” The three levels were adopted in 2013 by the American Psychological Association in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) to note the level of support an individual may require.
The label landmine can be tricky to navigate because there are other terms such as “special” that are used both as a slur and for worthy purposes (Special Education and Special Olympics). Eliminating these words are not necessarily advisable. These and other words, such as “disabled” and “autistic” should be used selectively and with respect.
Level 1 indicates the individual has the lowest support needs, while level 3 suggests a very substantial amount of support is needed. While the levels are not a perfect specifier, a person can change levels from time to time, and they suggest that identifying support needs is more important than how well a person is able to mask.
If you must speak on behalf of someone, such as at a doctor’s appointment, think about this example. “My name is Lucy, and this is Sam, my father. I will be his medical advocate today. He is diagnosed with autism spectrum disorder, and he has severe light and sound hypersensitivity. He would appreciate being able to turn off the unnecessarily bright ceiling lights. He wants to speak to you himself, but may have difficulty, so he has prepared a list of things to discuss, and he has asked me to add to the conversation, receive feedback, and to take notes as needed.”
Likewise, we do not pity our Uber driver for having a poor attitude and label him as “low functioning.” Why, then, must autistic individuals be labeled as such? We make the rules now.
If we must inform others of our challenges and strengths, again, something neurotypical people do not make a habit of doing, may we consider stating what is most salient to the situation and what supports are needed?
Dr. Anson Service is a licensed mental health counselor, and part of a team that assesses individuals for autism, ADHD, and more at Adventure Psychological Services. Dr. Service has written for various magazines and authored several books and is happy to further educate others on autism and other areas of neurodiversity. He and his wife have raised three young men and are now raising their dog named Luna. Learn more at www.neurodivergentdoctor.com.
In addition to the harmful functioning labels, there are some other common, well-intentioned euphemisms such as “special needs” or “differently abled” which are often used and can be even more ostracizing.
Alternatives to Functioning Labels
Should We Stop Using ‘High’ and ‘Low’ Functioning Labels?, continued from page 14
Ethan Nagy, Advocate for AAC
All Nonspeakers Should Have Access To Communication
As part of that interview, we connected with practitioner Dana Woodhouse of Praxis S2C, and her son, Ethan Nagy, a nonspeaking autistic young adult who uses S2C, and has a deep passion for helping other nonspeakers gain access to Wecommunication.hadanumber
In our Summer 2022 issue of Spectrum Life Magazine, we introduced readers to Spelling to Communicate (S2C), a form of Assistive Technology that supports individuals who are nonspeaking or unreliably speaking.
And by the way, Ethan is considered to be a highly fluent speller in our world. You can only imagine someone who has just come into fluency. Autistics who use AAC are some of the most determined, generous-spirited people I’ve ever met!
This ended up being frustrating and taking too long so we recruited Ethan’s sister to act as scribe: typing each word as I called it out into a document. We would often stop to clarify his answers and make sure we had written what he intended. My daughter Nika sometimes didn’t catch what I said so I would either correct her or Ethan would. We then reread each answer to Ethan to make sure it was what he had intended to say.
I loved elementary school until second grade when they tried to move me to the lower classroom called the ISC. It meant they had given up on me because I couldn’t do the fine motor tasks and I couldn’t talk. I keep thinking how different things would have been if I had stayed home. Mom did her best but she didn’t understand apraxia in the truest way.
The next time you see a nonspeaker, think of people like Ethan, and also of Niko Boskovic (see interview on page 7). They are worthy and have stories deserving of sharing.
It is a neurological disorder where a person cannot perform a motor task, even though the person understands what needs to be done. It is common for those with a diagnosis of autism to have apraxia too.
How old were you when you were first diagnosed on the autism spectrum?
And they are certainly welcome and accepted here at Autism Empowerment and Spectrum Life Magazine! Hello Ethan, it’s great connecting with you again! Tell us a little about yourself.
Continued on next page ADVOCACY
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of questions for Ethan and invited him back for a personal interview. As you read Ethan’s words, we invite you to picture Ethan using his letterboard to communicate. It may take just a few minutes for you to read this article, but when you hear about Ethan’s process, we invite you to celebrate his strength, advocacy and tenacity.
I found it hard to make friends. Systemic ableism forced me into accommodated classrooms with no stimulation. My mom treated me the same as my sister so I never felt different.
By Karen Krejcha
My name is Ethan Nagy. I am 21 years old. Because I cannot say words verbally, I use a letterboard to communicate. I live in a suburb of Portland, Oregon with my family.
Hi Dana! Before I share Ethan’s interview, I wanted to give readers a visual of how long it took for Ethan to compile his thoughts, use the letterboard and put his answers together?
Beyond that, I had to correct typos (my daughter was going fast), then make sure the questions and answers were in correct order. So you can get an idea of how long it takes for Ethan and his support team to get his lengthier answers done. All of this is to ensure that we are being rigorous in doing our job to a high standard.
Ethan works very, very hard to spell out his thoughts and he deserves only the best from his support staff.
To physically answer all your questions took Ethan around 2-3 hours over a couple of days. For part of it, he pointed to letters and we would stop after each sentence or chunks of words (I’m an S2C Practitioner, so I’m pretty good at keeping it in my head) and then I would hand write them down.
Special education classrooms treated me as incompetent, so I lost my confidence and started acting “autistic.” By that, I mean exhibiting stereotypical behaviors I never had before.
I spent so much time driving to schools and therapies. Mom wouldn’t give up. I was very friendly and cute as a lad so I got treated better than many others.
How did being autistic impact your childhood years?
I was three years old when I was diagnosed with autism. I began to lose words at two. One thing I remember about that time is trying to say things and the words not being there. Sadness is what I remember. No one knew what was happening to me. I lost the ability to make words with my mouth after many ear infections.
What is apraxia?
Photo courtesy of Dana Woodhouse
What is S2C?
Continued on page 18
Ethan Nagy, Advocate for AAC, continued from page 16
situation. It involves me scanning an alphabet board with my eyes and poking letters to spell out my thoughts.
I worked for several hours per week to learn to control my motor and reduce my impulsivity enough to smoothly point
I have verbal apraxia. I am unable to consistently make the sounds to articulate words. I am unable to make my words clearly understood. It is a tall order to ask me to have a verbal conversation. This means I am unable to participate in normal conversations in class.
Now, I can ask and respond to the discussions around me. Others often assume I cannot understand what they are talking about because I can’t speak. Then they tend to ignore or talk about me as if I am not there.
“Round, full communication means I am involved in all aspects of choice in my life.”
What was your process to learn?
S2C stands for Spelling to Communicate. It teaches individuals with motor challenges the purposeful motor skills necessary to point to letters to spell as an alternative means of communication. Motor skills progress along an increasingly complex hierarchy from pointing to letters to typing independently on a keyboard. (Spelling to Communicate, Spectrum Life Magazine, Summer 2022)
Letterboarding is a low-tech Augmentative and Alternative Communication (AAC) device that I am able to use in any
How does apraxia affect your communication and the way others interact with you?
17www. spectrumlife.org
In our interview in our Summer 2022 issue, you and your mom shared that you learned to communicate through letterboarding and S2C. What is letterboarding?
I am currently working on independent typing using a keyboard and iPad screen. This is challenging to my ocular motor and fine impulse control. This is my Mount Everest.
I am a friend to others now. I am a son, not a burden. I am a brother who argues with his sister, not someone who takes all of her momentum and energy. My family was restored to a balance of sorts and the anxiety my parents felt over meeting my needs has lifted to a large extent.
This summer I went to Washington D.C. as part of an advocacy group called Forging Friendships. We spoke with aides for several senators. We joined forces with an advocacy group called Communication First to get the word out about a new bill being introduced called the AACCENT Act (Augmentative and Alternative Communication Centers to Establish National Training Act, a bill being introduced by Senator Bob Casey). It is specifically targeted towards improving access and training for all types of AAC.
What advice or words of encouragement do you have for other nonspeaking autistic people who are reading this article?
There is no need in my life to type. I am solid in my AAC method, but no one will take me seriously unless I am independently typing. Independence is all the strangers in the room want to see, although even then I doubt that they will believe. I used a Picture Exchange Communication System (PECS) and Proloquo. It isn’t ideal. It means my choices for words are decided by someone else. This is useful to request, but it isn’t communication.
Education is not empirical-based; it is evidence-based, just like Applied Behavior Analysis (ABA). ABA claims their evidence-based practices somehow carry the same weight as empirical evidence. It does not.
Teachers strategize their plans based on things they read about. Or they apply new techniques they have been told worked on other students. Evidence clearly shows that self-contained special education classrooms don’t produce optimal results for disabled students. Schools continue to use them because they perceive that they work.
We had evidence-based beliefs that the earth was the center of the universe until that feisty Galileo went and ruined everything with his observations. I cannot attest specifically to all the evidence for and against my form of AAC.
I place my practitioners above all others. I am only here due to their coaching and loving faith in my ability to communicate. This is my sentinel event as the medical people call it.
Nagy, Advocate for AAC, continued from page 17
to letters intentionally. Visual scanning is the most fine motor part of the process and the hardest part to master.
What other forms of AAC do you use or have you tried?
Some people out there tell parents that facilitated communication such as letterboarding is not legitimate despite many heartfelt stories from autistics to the contrary. So how do you address the naysayers?
How has letterboarding and S2C changed your life? How has it changed your relationships with your family members?
Round, full communication means I am involved in all aspects of choice in my life.
To those whose child is non or unreliably speaking, I offer this: speak to your child with the same level of respect and cognitive understanding you would use for any other
I have a partner called my communication regulation partner. This is a person who coaches my eyes and body more, in the beginning, to help me learn the motor planning to poke my answers. They then become my person to assist in holding my board, keeping me regulated, and my eyes in sync with my finger.
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I assure you, I am in charge of my own thoughts and words. I am not so sure I am interested in participating in an experiment with a bunch of so-called academics who are not interested in learning new information but rather defending their own paradigms and self-interests. I am not a dancing monkey here to prove myself to them, you, or anyone else.
The last we heard, you had interviewed to be on the nonspeaking leadership council of the International Association for Spelling as Communication (I-ASC). Any updates?
We gave feedback on the most recent Motormorphosis conference so that it was more sensory-friendly for autistics. Hopefully, we will meet in person next year. There is a lot of brain power in that group.
What advice do you have for parents whose autistic child is nonspeaking?
Dana Woodhouse: For further information, please see the research page of United for Communication https://unitedforcommunicationchoice.org/research/Choice
I am on the council. I have attended two meetings so far. We are defining our role at present. The I-ASC leadership is teaching us leadership skills and how to work as a team.
The fact that you have access to this article shows me that you are surrounded by those who have faith in your abilities. I feel it is important to remember that ability looks different in each person. Only you get to define your abilities. Don’t let others decide what you can or can’t do.
Continued on next page
We started with three boards containing a section of the alphabet. I worked with fine motor on these boards first, then moved up to a single board with the entire alphabet on it. The lessons we used are interesting and contain types of answers from single known answers, to several answer choices called semi-open, to finally open answers, where I am on my own and spelling my thoughts.
Ethan
Tell us about your advocacy work and your goals in helping support nonspeaking autistics and other nonspeakers.
You better start focusing on the next part of this equation, because we are becoming adults. We aren’t interested in languishing in sheltered programs or group homes.
Ethan
Nagy, Advocate for AAC, continued from page 18
Karen Krejcha is the co-founder of Autism Empowerment, where she serves as Executive Director. She is the Editor of Spectrum Life Magazine and host of the Autism Empowerment Podcast. Karen was diagnosed on the autism spectrum in her 40s, after the diagnosis of her two children. She has been married to John for over 30 years and is devoted to promoting a culture of acceptance and empowerment within autism communities and worldwide.
Photos courtesy of Dana Woodhouse
To learn more about S2C: https://i-asc.org/ Communication First: https://communicationfirst.org/ United for Communication: https://unitedforcommunicationchoice.org/
person. They are not intellectually disabled most of the time, and even if they are, you shouldn’t treat them as a child.
To contact Ethan: ethannagy868@gmail.com
How can readers connect with you or learn more about Spelling to Communicate (S2C)?
What else is important for Spectrum Life Magazine readers to Youknow?need
Also, see our recent Spelling to Communicate interview in Spectrum Life Magazine (Summer 2022): https://bit.ly/spectrumlifes2c
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Search for occupational therapists who truly understand apraxia and the importance of motor coaching and breaking down motor plans to achieve success.
to know that we are here, getting our communication methods down, and looking for what’s next.
SelbieSofiaofcourtesyPhoto
ALL AGES AND ABILITIES IN THIS SECTION Giving Yourself Grace ...................................................................................... 21 #AskingAutistics with Lyric Holmans .................................................... 22 Michele Manly - Employment Empowerment 24 lifespan
We may try to keep peace By pleasing the people. But that doesn’t make peace. It ignores real issues. When people complain, We are a burden or pain. They often don’t see The lesson to be gained.
Help peace and love reign. The next time you find yourself in a hard place, Avoiding pain you don’t want to face. It’s okay to pray and ask for space. You are worth mercy and grace.
Forgiveness, patience, Mercy, grace. Every one of us created Has a cherished place. We often do not know Why troubles assault. It’s easy to cast blame, And neglect our own fault.
We are not a missing piece Of a puzzle to be solved. We have missing PEACE Because conflict’s unresolved.
By Karen Krejcha
Conflict and resolution Promote growth and change. Patience and forgiveness
And often their projection Leads to personal rejection. We feel intense sorrow and pain.
We each have strengths And gifts that will please. But our differences bring discomfort To those ill at ease.
www. spectrumlife.org LIFESPAN
But on further inspection, They’re missing life’s lessons. And our adversity transforms into gain.
GIVING yourself GRACE
It is as if two different people are communicating through me, depending on which medium I use.
We may be external processors who need more time to work through things, or visual thinkers, who take most statements literally because of the pictures people’s words draw in our minds. We may also have sensory static that can make certain types of communication more difficult for us.
LIFESPAN 22 www. spectrumlife.org Continued on next page
22
By the time I entered elementary school, I was reading adult-level books, and my reading level was literally off the charts, grade 12+, as far as the elementary school test could measure. I was labeled “gifted” and praised in reading and vocabulary while being punished when my other skills didn’t measure up to my reading ability.
The voice of my fingers has always been much different from the voice of my mouth. My thoughts are coherent, organized, and well thought out when I type. I read, organize, re-write, and read again, crafting statements that are hard to misconstrue. The language I type is precise, and the language I speak, unscripted and unrehearsed, is less polished.
#AskingAutisticsRebel Are You Hyperlexic?
Autistic people are statistically more likely to be minimally speaking, nonspeaking (due to sensory and motor control differences), or situationally nonspeaking (such as anxiety induced or selective mutism). We may also have another co-occurring language processing disability or condition, such as dyscalculia, dyslexia, ADHD, or hyperlexia, that can impact how we communicate.
Many Autistic people struggle with spoken communication in one way or another, whether that means struggling with processing the incoming spoken communications or communication output.
In addition to being Autistic and hyperlexic, I am also ADHD. I have auditory processing and executive functioning difficulties, often preventing me from holding and recalling short-term information in my mind on demand, further complicating my relationship with spoken speech.
My ADHD brain means I have branched thinking instead of linear thinking. As a result, the words and thoughts that come out of my mouth can seem chaotic, and out of order to people I’m attempting to communicate with, making me feel misunderstood when I try to convey complex ideas using spoken speech.
Spoken communication has never been the language that feels most natural to me. Instead, I’ve always felt as if my true voice is the one that comes when I’m sitting behind a keyboard, my thoughts flowing freely through my fingertips.
One of those cruel and unfair expectations is that we must all be best at spoken communication, regardless of whether it is accessible or natural.
I taught myself to read when I was one and a half years old and surprised my guardians one day by reading maps and street signs from the back seat of my grandfather’s pickup truck on a family road trip. None of the adults knew I could read or had become hyperfixated on words and books.
My early obsession with words quickly bloomed into an extensive vocabulary. At the age of three, I spoke in an overly formal manner, using complete sentences and phrases that often surprised the adults around me.
I was the kid who spent time in both special education and gifted and talented. Neither was right for me. Because I had one skill that gave me the appearance of being wise beyond my years, I was often pushed to do more than what was reasonable for me.
I’m hyperlexic, which means my reading and writing comprehension is and always has been far above my spoken and auditory comprehension.
Because of this gap in my ability, I was often accused of cheating on essays. I remember one teacher’s disbelief as they threw my essay into the trash can. “I don’t believe you wrote this. You cheated! This isn’t how you speak. These words are far above grade level! Go sit down and start over.”
By Lyric Holmans, NeuroDivergent
For example, I have an auditory processing disorder, which impacts how my brain interprets the words and sounds I hear. The background noise often bleeds into the foreground, and the words spoken fade back, entering my mind jumbled, incorrect, or out of order, leaving me scrambling to sort out people’s words like puzzles via context clues.
After that, I wasn’t allowed to work on essays at home without my teacher’s supervision. The teacher must have assumed one of my guardians had crafted the essay on my behalf.
Being Autistic can often mean we have differences in processing sensory information, language, and communication.
We may also struggle to understand and sort out the unspoken expectations regularly thrown around by non-Autistic people.
Alpatraum – Somehow managed to be both hyperlexic and dyslexic. Which kept them from catching the dyslexia for a long time.
Responses from #ActuallyAutistic Twitter:
This article is part of a continuing regular series at Autism Empowerment and Spectrum Life Magazine called #AskingAutistics by Lyric Holmans. To read past articles and get connected with autistic community members, visit www.spectrumlife.org/askingautistics
Wanting to know if others had had a similar experience, I typed a question into Twitter, as I have done many times before:
I am.
To join in the conversation, here is the link to the original tweet: https://twitter.com/NeuroRebel/status/1531634235714547713
#AskingAutistics,
Bryanna Bond, writer @Firestorm2343 There are pictures of me reading to my kindergarten class because I was the only one that could thoroughly read and my friends would ask me to during lunch. People also don’t believe me when I say I read the Narnia books at like 6 or 7.
continued from page 22
Lyric Holmans is an autistic self-advocate from Texas who runs the neurodiversity lifestyle blog Neurodivergent Rebel. They are also the founder of NeuroDivergent Consulting. Lyric is known as the pioneer of the #AskingAutistics hashtag, where simple questions prompt open-ended responses that Autistic people can easily chime in with, and invites participants to engage each other in conversations related to the topic. This hashtag connects NeuroDiverse people who would not otherwise have a reason to engage with each other, and fosters collective understanding of the Autistic experience. www.neurodivergentrebel.com
Peachyclair – I am, mum used to show people my party trick of reading the newspapers before I turned three. I also have dyscalculia and none of those things were known to exist when I was at school so I was a nightmare for them in a system where you were either top sets or lower set.
#AskingAutistics & #NeuroDivergent People: are YOU hyperlexic?
23www. spectrumlife.org
I’m a paradox, an anomaly, some called me gifted, and others called me stubborn. In reality, I was struggling with the expectations and constantly forced comparisons with others whose minds worked differently from mine.
(Editor’s note: Out of respect to #ActuallyAutistic contributors and Twitter styling, tweets have been shared as submitted and are a sampling of many responses. To search #ActuallyAutistic on Twitter, visit: https://bit.ly/askingautisticstwitter)
Kaz Windness, @DevilWrsBowTies – I wasn’t. I was a late learner. But my oldest kiddo was for sure. My toddler just picked a book they’d never seen before and read the whole thing. They could also read cursive! Like... HOW?
Morénike Giwa Onaiwu, @MorenikeGO I was hyperlexic and so I as my younger sibling. For so long I thought everyone was like that. I had no idea people thought I was lying about being able to read as a baby/toddler. Fortunately, my parents did capture some video & audio footage (because they thought it was “cute”).
Eliot K. Daughtry, @anutherwun – My dad told me I taught myself to read around 18 months. When cognitively tested at age 9, I read at college level. Labels, encyclopedias, dictionaries, science books, and then fiction. But I love comics and graphic novels most! And have auditory delays and dyscalculia too.
Jennifer Roy, @Jenroybook – Yes, obsessed with books and letters and numbers at age one. reading fluently at age 2. Runs in my family.
David Hilliard of St. Louis – Don’t know. Dad taught me to read before kindergarten. I was reading to the class. Eventually, I was reading/comprehending 3 grades ahead of myself. I’m also very literal.
Hyperlexia: “when a child starts reading early & surprisingly beyond their expected ability; often accompanied by an obsessive interest in letters & numbers, that develops as an #ActuallyAutisticinfant.”
Hi, my name is Michele Manly. I am 41 years old and am
I am an ambassador for the autism community and work in janitorial services at Innovative Services Northwest. This has allowed me to become a happy homeowner and avoid renting.
LIFESPAN
What was it like for you during your childhood years?
By John Krejcha
For Ambassadors of Autism Acceptance like Michele Manly, having secure and meaningful employment has provided the opportunity for personal choice, contribution to society, family, friendships, and home ownership. Today, we hear in Michele’s own words, her employment empowerment story.
I love visiting my family and friends from childhood through adulthood. Years ago, I found out I am related to half of Clark County and half of the Columbia River Gorge. I follow in the footsteps of my family helping the community out. I don’t mind helping a homeless person out with a snack like a piece of fruit. I report things to the city or Metro like trees that need to be trimmed or crosswalk signals that are broken.
How old were you when you received your autism diagnosis?
STORIES from the SPECTRUM
2424 www. spectrumlife.org Continued on next page
Autism from an Autistic perspective
A lady picked me up and she was one of my guardian angels. I gave her directions to my parents’ house and my dad,
Hi Michele! Please tell us a little about yourself.
I was 24 years old when the Division of Vocational Rehabilitation (DVR) helped with the diagnosis process. I have an Aspergers / Autism diagnosis and have known about my disability since September of 2005. That was 17 years ago.
from Vancouver, Washington. I love playing The Sims 4 & World of Warcraft, spending time with friends and family and taking care of my cat Spooky.
When it’s cooler outside, I will go for walks around the neighborhood or explore on the bus with Spooky in her backpack. I took a horticulture class in high school. I love taking photos of flowers even if I don’t know the names of the flowers.
I love my travels to White Salmon, WA. I have family there and I put flowers on my relatives’ gravestones. I love visiting my cousin Susan’s home to see the photos of the family. This home was my grandparents Adele and Bill Manly’s home. There is a NW Manly Street and Iva Lane named after my great grandparents William and Iva Manly whom I never met.
When I was 11 years old, I had a scary situation. You know how kids get kidnapped? Well, I walked from NW Portland at Jantzen Beach Center (an outdoor shopping mall) in December of 1992. I walked almost to Andresen on Evergreen Blvd in Vancouver. I crossed the I-5 bridge and walked past Old Apple Tree Park and crossed over Hwy 14. Yes, I could have been killed.
Michele Manly EmploymentEmpowerment
October of each year is National Disability Employment Awareness Month (NDEAM), a time to commemorate the many contributions of people with disabilities to America’s workplaces and economy. Led by the Office of Disability Employment Policy, the theme for NDEAM 2022 is “Disability: Part of the Equity Equation.”
In the 5th grade, my teacher Mr. Limblom discovered something different about me, so I was evaluated and had a neurological visit to the neurology department.
I follow about two routes at work depending on which janitor closet I use to get my supplies out of, like dusters and disinfectant cleaners. I make sure we have stock and keep track of inventory. I am more organized at work. I sanitize, dust and do many other tasks.
David was home. My mom, Toni and my sisters Kristie and Melissa were worried about me calling home from security. (They were in the old Kmart and I couldn’t find their rental car in the parking lot.) I got grounded from this experience, learning my safety boundaries. I still love to go to Jantzen Beach and window shop for stuff. I support small businesses and big box stores.
My first real job was at Innovative Services NW in Vancouver, Washington, where I currently still work today. My best friend Ammie and her mom Suzy gave me a referral and I saw a job listing in March of 2007. It only took me a month of calling my old boss Sheryl Roach and having an interview.
I was still working with DVR at the time I got hired. On Monday, April 30, 2007, I remember my supervisor Jeff Olson drove me to work in downtown Vancouver at the Public Service Center (PSC) next door to the Courthouse. I met my new coworkers, Dawn and Joanne. I worked with a six man crew, also with clients with disabilities.
Where have they assigned you to do your janitorial work?
Most people don’t know I survived a deadly blood clot called Pulmonary Embolism in my lungs from too much estrogen in my birth control pills in October of 2007, almost six months into the start of my janitorial job. I have since then become an advocate for my health. We are coming up on 15 years this October since it happened.
I worked at Town Plaza from January 2010 to October 2014 at Worksource, DVR, Home & Community before moving to the current building from November 2014 to March 2015 for Washington State Department of Social and Health Services (DSHS). I worked at Family Law Annex, Children’s Justice Center from March 2015 to April 2016. I went to the Clark County Courthouse from May to September 2016 and back to PSC from December 2016 to January 2021.
How did employment empower you to achieve personal goals and dreams?
What are some of your responsibilities and experiences?
I also became a mom. I had a baby in October 2016 and became a cat mom to Spooky in December 2020.
How long have you been at Innovative Services NW?
What were some of your accomplishments during your transition to early adulthood?
Being employed means a lot to me. I managed to buy my home in October 2013. I became a dog mom to Dory, a boxer in December 2013, whom I lost in October 2017.
Editor’s Note: For additional photos and stories about her career, see an extended version of Michele Manly’s story on our website at Michele’swww.SpectrumLife.orgemploymentstory in video at YouTube: Michele Manly, Janitorial Services: https://youtu.be/0dOcVeS3b0E
I have seen a lot of coworkers come and go throughout my career. Some have retired or switched jobs. I’ve worked with a 2-8 person crew. It just depends on where we need help or if more work needs to be done.
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I received 24 credits at Clark College in Vancouver in the early 2000s. I also participated in Job Corps at Fort Simcoe Job Corps in White Swan, WA and Cascades Job Corps in Sedro-Woolley, WA. I received my driver’s license in May 2002 while in Job Corps with a score of 96%.
My favorite memories about working for Innovative Services NW are being recognized in photos and videos. I love the Quality on Core Values photo from June 2009. I have a paper that talks about my janitorial skills. I was on brochures with the vacuum cleaner. I have a photo in the boardroom currently and on their website.
Also on their Facebook page from June 20, 2021, they featured both of my beloved animals Dory & Spooky. (I am proud to have them tattooed by Shelby at Shade & Lines Art Collective in downtown Vancouver.)
www. spectrumlife.org Michele Manly - Employment Empowerment, continued from page 24 Continued on page 26
I have been at Innovative Services NW for over 15 years. I am proud of all my accomplishments. I have cleaned many buildings in my 15 years, 3 months. I like where I work.
I currently clean the Educational Service District (ESD112) which helps the state of Washington out in many counties, not just Clark County. I have been cleaning for them
I earned a vocational trade certificate in Business & Technology in June 2002 and a vocational trade certificate as a Medical Office Specialist in March 2005.
What was your first job and how did you get it?
You’ve received a lot of positive recognition throughout your career.
since October 2021 after I left DSHS where I cleaned from February to September of 2021.
I would like to travel more outside of Washington and Oregon. I would love to go to Blizzcon with my best friend Ammie for
I would say try to find a job you’re interested in. For example, if you love food and you’re passionate about baking and cooking, see if companies will hire you to help in the kitchen of a restaurant or try fast food where you’re creating meals, washing dishes, cleaning or sanitizing.
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What advice do you have for neurodivergent people who are seeking employment?
26 www. spectrumlife.org Michele Manly - Employment Empowerment, continued from page 25 Washington State Call 888-754-8798 ext.1 Visit us online https://ddetf.wa.govat: Find out if you’re eligible A Washington State ABLE Account is a flexible and convenient way for people living with disabilities to keep their current benefits while also investing in their life to come.
I love to meet and visit my friends. I follow many gamer streamers from Igor’s Lair to Misere_Gaming, where I’ve become a big fan. Also, I would love to travel to Manly Beach in Australia to see other Manly family history.
I would love to finally get married. I keep a letter that my grandpa Bill wrote to me while in the Job Corps close to my heart. I am looking for the right man who loves me for me and who won’t take advantage of my kindness.
World of Warcraft by Blizzard Entertainment in California. Also, LegoLand in California. I have never been to Universal Studios and Disneyland or Disney World. I would love to travel to Hawaii to the Big Island and visit Hawaii’s Job Corps.gov.
Thank you for reading my Autism Story,
What are some of your goals and dreams for the future?
Michele Manly
Follow your heart on your interests. If you like taking photography, see if you can work or volunteer in an art gallery. Ask a photographer if they need help. I love going to the Portland Art Museum.
I love homes, from the architecture to the history of residential to community buildings. I loved drawing from the time I was a kid to an adult.
I want to see if a realtor needs any office help like filling up the copy machine or looking up some property listings. I want to see if a realtor needs a volunteer or will hire someone with a disability to help in the office without trying to get licensed. I even sent an application and an email to Keller Williams Realtors seeking employment.
www. spectrumlife.org
Autism resources for your family
Seattle Children’s Autism Blog offers the latest information helpful to raising your child with autism. Topics range from selecting summer camps, support classes and new research findings. Sign up today.
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Alex, living with autism
Club EMU, Everyone, Me and U ........................................................ 29 Writing is Cathartic ............................................................................... 32 IN THIS SECTION recreation INCLUSIVE WAYS TO HAVE FUN
Hi Michelle! Please tell us a little about yourself and your family.
3rd Tuesday - is our Random Act of Kindness (R.A.O.K.) Craft night (currently virtual and in-person) where we create crafts. Afterwards participants can individually hide their crafts in their communities for people to find and spread joy and kindness in the process.
By John Krejcha
What is Club EMU and what does the name stand for?
What kind of outings or activities do you currently offer?
We started out under the umbrella of the nonprofit Charitable Partnership Funds while we got up and running, launching our first activities in March of 2020! Of course, March of 2020 was also when our country began to shut down due to the COVID-19 pandemic. We offered activities on Zoom, we set up a birthday club to reach participants via snail mail, and had outdoor events such as hiking and kayaking, anything we could think of to connect with participants and let them know they were not alone. We officially received our own 501(c)3 status in March of 2021.
Currently we offer monthly:
TGIF (Thank Goodness It’s Friday) Fridays - via Zoom on the 2nd and 4th Fridays monthly where we visit and play online games like Jackbox TV’s “Drawful”.
Building Friendships, Offering Support, and Advocating Together
stepped in to help fill the gap with Club EMU, a welcoming, inclusive club and nonprofit with a sense of acceptance, kindness, and community.
Do you or your key volunteers have a personal connection to someone who is autistic or neurodivergent?
1st Tuesday - Clubhouse Nights where we rotate various activities like movies, campfires, yard games, board games, video games, etc.
Our sons are both autistic and our story is not unlike so many others. There was always a struggle for them to connect with others and build friendships, but we found this even more of a struggle as we entered adolescence and then
Club EMU stands for Club Everyone, Me and U. Club Everyone, Me and U is a 501(c)3 nonprofit social group for neurodiverse individuals ages 16 through adult. We provide activities and events “where you can be a friend and make a friend with acceptance, understanding, and kindness.”
RECREATION
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www. spectrumlife.org
Recently, we connected with Michelle Davis, one of the founders of Club Everyone, Me and U, to talk about how they support and advocate for autistic and neurodiverse people to build friendships through fun social events within Portland and Vancouver communities.
Hello! We are the Davis Family. There is my husband John, myself, and our two sons, Matthew and Joshua. We live out in Estacada, Oregon. We, together, encompass a love for animals, nature, crafts, creative writing, video games, and sports
I didn’t understand that response. I saw the Emu as unique, different, one-of-a-kind, quirky, but not ugly. So, the Emu not only spells out our inclusion with Everyone, Me and U, but also speaks to the fact that we are all individuals. We are all unique, different, quirky, and one-of-a-kind.
We see an Emu in your logo. Was that intentional when you created your name?
What is the genesis story behind your founding?
Afteradults.weattended
1st Thursday - is a Ladies Caregiver night out.
For many years there has been a need for welcoming places in the Portland metro and Southwest Washington area that provided opportunities for connection and socialization for neurodivergent teenagers and young adults to connect with people of all abilities. Unfortunately, once the COVID-19 pandemic began in 2020, many of the support, social, and game clubs that existed in the Portland metro area ended up closing Fortunately,permanently.alocalfamily
Continued on page 30
The Emu on the logo came to me almost immediately as I was trying to brainstorm a name and acronym that spoke of inclusion. Early on in the planning stages when I suggested the Emu as mascot/logo, one person questioned it by saying, “Why an Emu? An Emu is an ugly bird.”
adulthood. We found very little in social resources when it came to inclusive activities within our community for teens and
a Halloween dance during Halloweentown in St. Helens, Oregon in 2017, and seeing how much fun it was for our sons, we approached the Autism Society of Oregon (ASO) about a Halloween dance party idea. We partnered up with ASO and ran a Halloween party with them in 2018 with much success, followed by one in 2019. We wanted to be able to provide more social opportunities for the neurodiverse community, and on December 31st, 2019, we officially filed with the State of Oregon as a nonprofit business.
Both our sons are autistic and two of our board members also have children that are autistic.
Club EMU
2nd Tuesday - Taco Tuesday where we meet up at a different taco spot monthly around the Portland Metro area.
We currently use Eventbrite for most of our event registrations and participants need to register for each event separately. We also ask that if a participant is more comfortable or in need of support, that their personal support worker register and attend activities with them.
Please share a story about how Club EMU is making a positive difference.
Are the activities in-person or online?
Club EMU, continued from page 29 30 Continued on next page www. spectrumlife.org
Our goals are to provide a safe place for social opportunities “where you can be a friend and make a friend with acceptance, understanding and kindness” and to provide reoccurring activities where you can meet people, make connections, and build friendships.
How would a person register for one of your events?
What are the costs for participation?
We do have liability/photo waivers and the link to the waivers can be found in the details of the Eventbrite registration and also on our website at https://clubemu.org
During the pandemic we did activities on Zoom and I was curious if people were able to make connections. At each Zoom night, we would start off with an introduction circle. Each participant would mention their name, area they lived, and two things they liked.
We also usually have one roaming day monthly with another meet-up such as visiting an animal farm, hiking, kayaking, bowling, etc.
What are the goals of Club EMU?
At one particular Zoom night when my son Josh was doing his introduction, another participant piped in and said, “Oh, I know what Josh is going to say he likes. He is going to say he likes retro video games.” It’s moments like that we can see the difference Club EMU is making in people’s lives.
Yes, we have both in-person and online activities. We serve the Portland, Oregon metro areas along with Vancouver, WA. While our Clubhouse and RAOK nights are currently held in Sherwood, Oregon, the remainder of our in-person activities move around the metro areas monthly, reaching as many participants as we can.
We have free to low-cost events, and when an event comes up that may have a higher cost, we seek sponsorship either through Club EMU donations or through partnerships with local nonprofits and businesses.
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And breaking news!!! We will be taking over West Linn Game Club (starting January 2023). West Linn Game Club was founded by Michelle Kuepker and ran under Portland Asperger’s Network for over 20 years. We are humbled and grateful to have the opportunity to continue this wonderful program for the community.
We also want to eventually have it to where much of Club EMU is operated by neurodivergent individuals, with us being the framework there for support.
Website: https://clubemu.org
Facebook: www.facebook/com/clubemu.Oregon
That’s awesome! What are your goals for the future?
Email: info@clubemu.org
Mail: P.O. Box 411, Estacada, OR 97023
One goal we have is to own a van or small bus to be able to reach participants that do not drive or have the support necessary to help with transportation issues. Another goal of ours is to have our own building that would be in a central location and house many of our activities under one roof.
What is the best way somebody can connect with Club EMU to participate or volunteer?
We have several ways people can reach us and connect.
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Wonderful! Does Club EMU ever need volunteers?
www. spectrumlife.org
Club EMU, continued from page 30
Yes!! We would love support from volunteers.
JohnEMU Krejcha is co-founder of Autism Empowerment and serves as Programs Director. He serves on the Editorial Advisory Board of Spectrum Life Magazine and is a co-host for the Autism Empowerment Podcast. John is married to co-founder Karen Krejcha and is the father of two amazing children and their feisty cat, Zula. While John is the only one in the family who is not on the autism spectrum, he identifies as a neurodivergent and loving ally.
Did your writing change once you discovered you were autistic? If so, how?
It changed in that I stopped trying to write neurotypical protagonists! I used to try to write in the head of characters outside of my own perspective (in this case, neurotypical). It didn’t work out too well. So now I embrace writing characters that explicitly identify as neurodivergent. It helps me feel like I can really mine my lived experience instead of writing what I thought I had to, what I thought was “normal.”
Continued on next page RECREATION
Hi, Meg! Tell us a little about yourself.
Hi! My name is Meg Eden Kuyatt. I’m a writer and writing instructor. I teach creative writing at universities and creative writing centers, as well as through webinars with writing organizations. I also love to mentor and work one on one with writers on their manuscripts and their writing journey at large.
By Brian Tashima
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Writing is Cathartic An Interview with Meg NeurodivergentEden,Author
How did your diagnosis impact the way you looked at yourself?
I learned about autism from a book and actually made my own major where I focused on trying to understand the brain, and especially autism. The culminating project was a novel from the perspective of an autistic girl, where I mined my early memories. It was very cathartic to write and made me realize I really identified with this whole autism thing.
I’ve always known I’m different, but in my family, that was always celebrated (my parents are incredibly amazing, supportive people). College was the first time I wondered if that difference was something more than just “quirky.”
As I hit my twenties, I particularly noticed that I couldn’t keep up with “normal” and had a bit of a crisis. How was everyone else able to hold full-time jobs, clean their house, cook, and see people in their spare time? How does my dad, in his sixties, have more energy than I’ve ever had? I began to wonder if the reason I felt like I understood autism is because I was autistic (amazing how that works), but it was only during the pandemic that I got formally diagnosed and confirmed as on the spectrum—as well as having an anxiety disorder.
I especially love connecting with fellow neurodivergent writers! I write poetry, middle grade and young adult books. When I’m not reading and writing, I enjoy things like zumba dancing, singing harmonies to my favorite songs, and taiko drumming!
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While I have trouble sustaining a typical full-time job, I excel at self-employment: teaching online and at conferences, and writing. I’m very intrinsically motivated and do well working from home, where if needed, I can work from bed with a hot pack.
I think I first realized I wasn’t like everyone else in college, when I was living away from home, with people who liked to leave the lights on and be loud late at night. I had a complete meltdown at my roommate, who kept her desk light on all night, making it impossible for me to sleep. I couldn’t believe it—who does that, I wondered? It just seemed obvious to me that you don’t do something like that. But that’s when I realized people are different, and that just because something’s obvious to me doesn’t mean it is to someone else, that just because it bothers me doesn’t mean it bothers everyone. I was shocked it didn’t bother anyone else. I think that was the first clue to me that maybe I’m different in how this sensory stuff impacts me.
Your bio on your website says that you identify as neurodivergent (autistic and anxiety disorder). When and how did you come to realize that you were on the autism spectrum?
As a gamer and a reader, I really enjoyed the novel’s unique and entertaining style, and as an author, it was one of those books that made me say out loud, “I wish I had written this!” And so, I was glad to have the opportunity to not only meet Meg this past April when we participated in an Instagram Live series put on by Multicultural Children’s Book Day, but also to interview her for this issue of Spectrum Life Magazine.
Instead of shaming myself for what I can’t do, I can now see where I excel, and look for ways to capitalize on what I do well. I now have language to explain what’s going on to not just others but myself. I used to get overstimulated and just have a complete panicked meltdown—why was I panicking? Where was it coming from? Now I understand what’s going on, and that helps calm me down.
Meg Eden is a neurodivergent author who writes books that feature neurodivergent protagonists, including Post-High School Reality Quest, a young adult coming-of-age novel about a girl making the transition from high school to college while viewing her life and the world as if it were a classic text adventure game.
The diagnosis is a huge relief to me! I now have a way to better understand myself and explain my differences. In my twenties, I wondered if I couldn’t keep up with “normal” because I was lazy or weak, that I wasn’t trying hard enough to be an “adult.” But now I realize I am just wired differently and have a spiky skillset.
To learn more about my books, my events, and more, visit my website at: https://www.megedenbooks.com/
What inspired you to write Post-High School Reality Quest?
This book was really me just getting out my feelings of being overwhelmed and overstimulated, but as I wrote I realized it didn’t just have to be a rant—it could point kids to real tools that could maybe help them too.
Thanks, Meg! Finally, how can people get in contact with you?
If you are interested in preordering Good Different, helping me celebrate the release, or investigating an author visit, you can find out more info here: https://linktr.ee/medenauthor
I’m fascinated by the idea of going back to those moments you regret and trying them again. The incredible thing about writing Post-High School Reality Quest is that I realized: no matter what Buffy (the novel’s protagonist) does, it doesn’t fix the deeper issues in her life. For example, if I could go back and not say that embarrassing thing to my friend that one time, it wouldn’t necessarily change or fix a larger tension in the relationship.
I also invite you to check out Multicultural Children’s Book Day, an annual online celebration of diverse books.
33www. spectrumlife.org
You can find me on social media:
I may think going back in time and redoing is the answer, but in the end, I realized in writing that none of us are perfect and we all need grace extended towards us. I also realized I needed to focus on where I move forward with what I’ve learned instead of focusing so much on the past. Writing is cathartic in that way; we learn about ourselves through the process.
Tell us about your forthcoming project, Good Different.
Link to interview on YouTube: https://youtu.be/P7d-enOOKic
In short, a prompt: my friend said it would be cool if I wrote a novel in the form of one of those old-time Infocom games. But why did I take this prompt and run with it? My anxiety disorder makes me feel like every day I am trying to play life as a game with a 100% run. It’s impossible, but my brain always tricks me into thinking it’s not, and focuses on all the ways I’ve messed up.
Good Different is a middle grade novel in verse about an autistic girl named Selah who learns to advocate for her needs and accommodations through writing poems. Her special interest is dragons, and she wishes she was powerful like a dragon, as her sensory needs often make her feel so powerless. But as she finds a voice through poems, sensory tools, and allies, Selah learns she doesn’t have to be a dragon to feel empowered.
Twitter: @ConfusedNarwhal Instagram: @meden_author Facebook: Meg Eden Writes Poems
Brian Tashima is an author, screenwriter, musician, and philanthropist. His credits include the award-winning Joel Suzuki series—a young adult sci-fi/ fantasy coming-of-age story about a teenage boy whose autism is the source of his magic—and the manga-style comic book series Glorified. He also sings and plays guitar for the rock band Second Player Score and serves on the Board of Directors for Autism Empowerment. Visit www.JoelSuzuki.com
Writing is Cathartic, continued from page 32
Link to MCBD page: https://bit.ly/mcbdmegeden
What to Put in Your Toolbox Before Starting the New School Year .............. 35 Creating More Equitable Spaces .......................................................................................... 38 IN THIS SECTION education KNOWLEDGE TO EMPOWER FAMILIES AND INDIVIDUALS
Additionally, regardless of whether your child attended ESY or Covid Recovery Services this summer, parents should ask specifically that their school district take Summer ESY data once their child comes back in the fall.
Depending on how much your child’s needs have changed since their last IEP meeting, it may be helpful to have an IEP meeting at the beginning of the school year. The IEP team can discuss your child’s updated needs and make changes to the IEP, if needed.
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IEP Meetings at the Start of the Year
If your child was found eligible and attended Extended School Year (ESY) or Covid Recovery Services over the summer, ask the school district to provide progress notes for the IEP goals worked on during those programs.
By Diane Wiscarson and Carly Cannon
Continued on page 36
Be aware of how your child’s needs change over the summer. For many students, summer break means more time at home. Parents can take advantage of this time by documenting how their child is doing, as well as any behavioral or educational strategies that are successful. This way, when the school year starts, you can communicate with your child’s Individualized Education Program (IEP) team what your child is struggling with and what seems to help.
Primarily, parents should consider reaching out to their child’s case manager, general education teachers, and special education teacher. You can explain the best way to contact you, and ask for their preferred communication method.
Whether your child is starting the school year in the same district or in a new one, their school district must provide them with a Free Appropriate Public Education (FAPE). There are many ways that parents can help ensure that their child actually receives a FAPE starting on the first day of school. The key is to remember your ABC’s & D –Be Aware, Breathe, Communicate, and Document.
Summer ESY data reflects the last two weeks before summer break and approximately the first month of the new school year. Fall ESY data tracks whether a student is able to recover skills lost over the summer related to IEP goals, and is important for determining whether or not a student is eligible for ESY the following summer.
Take Advantage of Summer Information
Of course, you can request an IEP meeting any time. School districts must hold an IEP meeting at least once a year, but if your child’s needs have changed significantly over the summer, request a meeting as soon as you can when school starts.
Get Organized
Communication with the people working with your child is essential. Parents can help establish a healthy communication pattern with their child’s IEP team by emailing team members a few days before school starts.
What to Put in Your Toolbox Before Starting the New School Year Remembering Your ABC’s & D!
The IEP team may need to add a home-to-school communication system as an accommodation on your child’s IEP. If your child struggles with behavioral issues or has an IEP team that is still developing strategies on how to engage with them, a home-to-school communication system might be appropriate. A home-to-school communication system could include the method of communication, what types of events or information should be communicated concerning your child, and a timeline for when a response is due from the staff member or parent.
Establish Early Contact With Your Child’s IEP Team
EDUCATION www. spectrumlife.org
If there is one thing any parent knows from their child being enrolled in special education services, there is a lot of paperwork! As taxing as this may seem, paperwork and documentation can be a great tool to use when advocating for your child. However, in order to use the information in the paperwork, it must be accessible.
Additionally, you should share some basic information about your child such as their strengths, triggers, needs, and the most important accommodations on their IEP. This communication can open up a dialogue and prompt the teachers to ask any questions they have regarding your child.
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Second, keep track of your child’s IEPs and IEP progress notes. Both can be used to show what is and is not working for your child. IEPs include information about a student’s present levels of academic and functional performance, annual IEP goals and objectives, accommodations, services, and parent concerns.
Having your child’s IEPs and IEP progress notes organized and at your fingertips is helpful when gauging a child’s progress and having discussions with the educational providers at school.
evaluations will come up time and time again: when a student is struggling and needs different supports, when a student requests accommodations for standardized tests or college entrance exams, as well as when and if a student later seeks to enroll in Developmental Disability Services (DDS). Evaluations, either provided by the school district or by an outside provider, can be used to show why your child requires certain services or accommodations.
Parents considering requesting mediation, filing a DOE complaint or a due process complaint will need to start the school year by keeping a record of issues and parent requests. Families should try to track when accommodations or services are not provided to their child by maintaining some kind of documentation, such as a Google document.
Thesuccessful.needfordocumented
Additionally, families should email staff with concerns, as well as include a detailed list of parent concerns in their child’s IEP. Documentation is critical to achieving a desirable result in mediation or a due process complaint because it demonstrates what you can prove the school district did not provide.
Hopefully, parents and students are able to start the school year with a strong IEP and good communication with staff. Unfortunately, some families are entering the school year with the baggage of failures by their school district from years past. Parents in this position should continue to advocate for their child and try to establish communication with their child’s IEP team, but should also proceed with caution.
Starting on the Wrong Foot
First, it is important to maintain copies of all evaluations of your child. Evaluations are critical to understanding what challenges your child experiences and what they need to be
36 www spectrumsmagazine.orgwww. spectrumlife.org Continued on next page What to Put in Your Toolbox, continued from page 35
If the mediation is successful, the parties sign what is called a “Mediation Agreement,” which lays out the details of what was agreed upon at the mediation in a binding contract. DOE complaints are investigated by the state, and if substantiated, could result in a myriad of remedies that are determined at the sole discretion of the DOE.
If the district continues to fail your child, it may be useful to consider requesting mediation, filing a complaint with your state’s Department of Education (DOE), or even filing a due process Mediation,complaint.DOEcomplaints,
and due process complaints are processes that generally follow a school district’s consistent failure to serve a student. Mediation is a mutually voluntary process between parents and the school district that focuses on rebuilding trust and communication, as well as determining services that would benefit the student or help the student make up for lost educational services.
IEP progress notes are provided by school districts at least two times each year. If the IEP progress notes show that your child is making progress on their goals and objectives, that likely shows that supports in their IEP are working. Likewise, if the IEP progress notes show no progress, that means your child’s IEP should be updated to include appropriate supports.
A due process complaint is the equivalent of a lawsuit in the special education context. This includes a hearing in front of an administrative law judge (ALJ), where parties call witnesses and provide evidence that allow the ALJ to decide whether or not the school district must provide a remedy to the student for their special education shortcomings. Given the necessary expertise for these processes, it is common and often useful for families to hire an attorney to assist them with a mediation, DOE complaint or due process complaint.
School districts with an in-state student transfer to a different district must provide services comparable to those described in the student’s IEP from the previous district. This is done until the school district either adopts the student’s IEP from the previous district, or develops its own IEP for the student.
Whether your child is attending school in the same district or a different district, they must be provided a FAPE. If
Students who start in a new school district in the fall must also immediately be provided a FAPE. What happens to a student’s IEP when they transfer may depend on whether the new school district is in-state or out-of-state.
WilsonWendyofcourtesyPhoto
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School districts who have an out-of-state student transfer into their district follow the same process, except out-of-state transfer school districts can choose to conduct an initial evaluation for the student. Of course, even then, the school district must provide comparable services to the student’s IEP from the previous school district until their initial evaluation is completed.
When advocating for your student’s education this school year, just remember your ABC’s & D – Be Aware, Breathe, Communicate, and Document!
your child needs something else that they are not getting, communicate that to the IEP team and document if it does not happen. Finally, in the event that your student is still struggling despite your efforts, you may find it useful to consult with an attorney to consider your other options or to even file a DOE or due process complaint.
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Transfer Students
Summary
Diane Wiscarson is the founding attorney of Wiscarson Law, the only firm in Oregon with a primary practice area of special education law for families, and has represented thousands of families of special education students in Oregon and Washington. Carly Cannon is a law clerk at Wiscarson Law and a student at the University of Oregon School of Law, where she is focusing on special education law. Find more information at www.wiscarsonlaw.com
FOR INFORMATION AND RESERVATIONS CONTACT: www.mollyscaribbean.com206molly@mollyscaribbean.com575-0907/503715-3107 IBCCES as Advanced Certified Autism Centers, Resorts welcomes all families to experience a luxury vacation like no other! COMING SOON: ISSUE #19 www.ZoomAutism.org
A sense of belonging.
What is equity?
This is the first part of a series of articles I will write about equity and how to build more equitable spaces in our classrooms.
First, we need to have an understanding of what equity is. Equity and equality are not the same things.
Equity is equal access and equal opportunities that value and empower all learners to be successful. Equity considers the entire person, their strengths and weaknesses, and offers support and entry points that challenges and engages them to Whensucceed.weare
When equality is central, everyone is offered the same resources, but these resources do not help everyone the same way. When equity is central, resources are offered as needed for everyone to have a common experience. Education should be about common experiences.
• When we promote equity, eyeglasses are given at the correct intensity to those who need them.
Below is a popular image commonly used to help illustrate the difference between equity and equality.
So, how can we ensure equity in our classrooms?
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First, a culture needs to be created within a classroom that implies all are welcome. Feeling a sense of belonging is central to promoting equity. In a tweet by Rabbi Danya Ruttenberg, she suggests the following:
wants their child to be excited to go to school, learn, and take those experiences into the greater world to succeed. However, what does it mean to be equitable, and how can educators and parents ensure every child has the opportunity to grow and flourish in school?
Everylearning.parent
centered around equity, supports are provided to those who need them. When we are centered around equality, the same supports are provided to everyone. For example:
• When we promote equality, either no one is allowed to wear glasses or everyone gets the same glasses.
By Aaron Blackwelder
Creating More Equitable Spaces A Sense of Belonging for All Students
The first image shows how boxes are handed out equally. Obviously, the man on the left does not need the box. He can see the baseball game fine without it. A single box is great for the boy in the middle. However, the child on the right is not helped at all with the single box.
Equality - “Equality is the provision of equal treatment, access, and opportunity to resources and opportunities.” (Latta, 2021). This means everyone gets the same thing, despite where they come from or what needs they might have.
I am sure readers of Spectrum Life Magazine are familiar with the term equity and how equitable classrooms help bolster our children’s experience in school. In contrast, inequitable classrooms either limit or squash our children’s perspective of
When we are equitable, the boxes are handed out according to the need in order for everyone to watch the baseball game.
Equity - “Equity is the provision of personalized resources needed for all individuals to reach common goals. In other words, the goals and expectations are the same for all students, but the support needed to achieve those goals depends on the student’s needs.” (NSHSS, 2021).
We would consider it cruel to not allow anyone to use glasses. It would be silly to give glasses to those who don’t need them and senseless to give everyone the same lens intensity. Very few would be able to thrive in this setting. But, to ensure everyone who needs glasses has them at the correct intensity gives everyone equal opportunity to be successful.
Credit: Interaction Institute for Social Change | Artist: Angus Maguire
We want to tell them that our world is better because they are here and that who they are will help contribute to making our world a better place. We need to let our children know that because they are who they are, we are better and stronger, and their success is not “in spite of who they are” but “because of who they are.”
In the upcoming editions of Spectrum Life Magazine, I will detail other steps educators can take in order to create more equitable spaces. Some of these will include: Clear Learning Targets, Multiple Points of Entry, Collaborative Assessment Practices, and Tech Tools that help support equity.
Creating a sense of belonging sets the stage for learners and is an important part of creating more equity in our classrooms. However, there is more to equity than creating welcoming spaces.
How is seating organized?
Do all students all have the same hard plastic chairs? Do they have choices in the kind of chairs that make them feel comfortable? Can seating be moved around or are seats stationary?
2.https://bit.ly/impacttulsaNSHSS(2021,May11).Equity vs Equality in Education: Why Both Are Essential in Today’s Classrooms. National Society of High School Scholars. https://bit.ly/nshsseie
Expansion = we will grow and change because of what you offer.
We can make the choice to elevate leaders and center voices who will change paradigms, move us all into what can be.
What kind of seating is provided?
Is seating assigned or do students choose? Are students isolated or are they in groups? Are there spaces for students to work in silence when the class is loud? Where is the focus of the classroom?
Do students have a voice in the rules of the classroom? Is student work displayed in the room? Who gets to decide what work is displayed and how it is displayed?
1. Latta, D. L. (2021, May 25). Equity in education: Defining equity, equality, and standardization. Impact Tulsa.
www.spectrumsmagazine.org39 Creating More Equitable Spaces, continued from page 38
Look around the classroom and ask yourself the following questions:
Another great suggestion is, if music is played during classtime, ask students to help you build your playlist. Representing our students in the kind of music played is another way to help them feel like they belong.
Celebration = your being here is great!!
Now, ensuring all students have a sense of belonging is not just about making them feel good. There is science that supports the notion that when we feel safe, we thrive.
Because students are so diverse (racially, economically, socially, ability, etc.), they may not feel safe walking into a classroom. Creating a welcoming space where all are welcome and feel a sense of belonging brings about a sense of safety. We are smarter when we feel like we belong within a given space because we do not have to scan the room for threats.
Inclusion = you’re allowed to be here.
Who is being represented?
Aaron Blackwelder is a Digital Learning Coach in the Vancouver Public School District and coaches high school golf in Southwest Washington. He is the co-founder of Teachers Going Gradeless, and an educational contributor to Spectrum Life Magazine. Aaron has been a Washington State English Teachers Fellow, was nominated for Washington State Teacher of the Year in 2019, and is a five-time golf coach of the year. Aaron is a husband and father of two boys on the autism spectrum, who inspire him to become the teacher who meets the needs of all students. Visit www.TeachersGoingGradeless.com
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How can we make our spaces welcoming?
This is still part of our DNA. Students in our classrooms will revert to fight or flight when they feel threatened. Our brains are constantly scanning our environment for threats to our safety. The safer we feel, the less often we scan. The more threatened we feel, the more frequently we scan. When threatened, our amygdala “hijacks” us and sends us into fight or flight.
What kind of voice do students have in the organization of the classroom?
Works Cited:
Our classrooms must be centered on expansion if we want to create equity. We don’t want to tell our children that they are allowed to be here or that it is great they are here.
If there are posters around the classroom that include images of people, what people are being represented? Do those people represent the diversity of your students? Do the books and materials represent the interests and backgrounds of your student population?
Thousands of years ago, our ancestors’ brains adapted to respond to fight or flight in order to survive. When a predator, such as a saber-toothed tiger, entered our environment, we responded with fight or flight in order to survive. Some would run and find safety while others would stand and fight. This adaptation helped human civilizations to survive.
health & wellness DEVELOPING A SENSE OF WELL-BEING AND WHOLENESS IN THIS SECTION Paving the Path to Mental Wellbeing ....................................................... 41 10 Years of Specialty Athletic Training ............................................................ 44
Occupational therapists’ role as mental health providers is to guide children and their caregivers in making meaningful choices that prevent, promote, maintain and/or restore mental wellbeing. Occupational therapists play a crucial role in supporting development, personal and social skills, functional engagement in activities children want to do and need to do, and emotional regulation skills. Occupational therapists focus on building skills that support children and youth to be functional and productive in their everyday lives.
Mental health is experienced on a continuum, and whether children have the skills to maintain mental wellness or not,
In fact, recent studies have found that 1 in 5 children ages 3 to 17 in the U.S. report mental, emotional, developmental, or behavioral disorders. Individuals who are neurodivergent, have a developmental delay, and/or are a minority are at higher risk of mental health challenges. (The Surgeon General’s Advisory, 2021)1 Further, it takes an average of 8 to 10 years to access mental health services from the onset of mental health symptoms (Ruderman Family Foundation, n.a.)2
We may make choices in our daily lives to promote mental wellbeing, such as family dinner, a run before a challenging day at work/school, moving our body before a big event, or sitting in silence to calm our body before a big class presentation.
Signs of mental wellness and potential mental health challenges:
The pandemic isn’t the only driving force for mental health needs; social media, what’s been on the news, the closure of community sites, and the tragedies we have faced continue to escalate mental health crises for children and youth.
The lack of services addressing mental health challenges has become even more apparent in the last two years. Before the COVID-19 pandemic, mental health problems were already a concern and the leading cause of disability and poor life outcomes in young people.
understand the many variables that impact mental wellbeing (environment, sensory processing, motor skills, neurocognitive abilities, etc.) and the importance of addressing each child’s unique strengths.
The screening tool informs clinicians and caregivers of potential areas to address that support health and wellbeing. When a mental health need is known, clinicians and caregivers can address these concerns utilizing clinical and evidence-based toolkits designed by BOLD therapists to support caregivers and children of all exceptionalities.
Continued on page 42
Paving the Path to Mental Wellbeing
Mental health promotion’s core is the presence of something positive such as positive affect, positive psychological and social function, productive activities, and the ability to cope with life stressors and adversity.
The importance of mental health screening tools that support health and wellbeing.
At BOLD Pediatric Therapy Center, we recognize the importance of mental health promotion and the current lack of services to support children and youth in our community. In addition, we recognize that after a mental health need is reported by a child or caregiver, it’s often challenging to find services or figure out the next step to support positive mental Cliniciansfunction.atBOLD
The first step in addressing the mental health crisis is to understand what mental health promotion is. Mental health is defined as, “a state of successful performance of mental function, resulting in productive activities, fulfilling relationships with people, and the ability to adapt to change and cope with adversity (Bazyk, 2011)3
Evidence indicates that the absence of mental illness does not imply the presence of mental health, and the absence of mental health does not imply the presence of mental illness.3, 4
How Occupational Therapists Can Provide Support
The first step to addressing mental health needs is to screen for potential areas of concern. Often mental health screening tools are complex and focus on mental ill-health. At BOLD, we have developed a screening tool designed for the most common mental health needs of children and youth.
By Hailey Johnson, OTD, OTR/L, BOLD Pediatric Therapy Center
The most common mental health challenges children and youth report are anxiety, depression, behavioral, and social participation concerns (bullying, peer problems, social-emotional skill challenges, and social withdrawal).
Between 2011 and 2015, youth psychiatric visits to emergency departments for depression, anxiety, and behavioral challenges increased by 28%.
How is mental health and mental health promotion defined in this context?
How can an occupational therapist help support a child’s mental health function?
For many of us, the last two years have been a rollercoaster of emotions, challenges, and unexpected life stressors. Children and youth with developmental delays and those who are neurodivergent have been greatly impacted by the lack of services, community and school closures, and the inability to get appointments to support health and wellbeing.
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• Frequent tantrums or intensely irritable.
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• Happy, content, and satisfied with life.
Signs of positive mental health in children and youth: Feeling good means:
• Bouncing back after a challenge.
Common signs of mental health challenges in children and youth: *
• Getting along with others (friends, family, and peers).
it is important to know the signs of mental health challenges.
• Often expresses fears or worries.
Supports & Strategies for Parents and Caregivers:
Improving mental wellbeing includes understanding the context and reason(s) for a person’s actions or behavior so that proper support strategies for that person can be applied. For example, is the reason that your child is irritable, has challenges calming or has low energy that they’re experiencing sensory overload? Are their frequent physical pains a sign of anxiety or a physical condition needing a medical doctor? Is their school performance declining because they need a learning accommodation? All behavior is a form of communication. )
• Has low energy.
• Has difficulty making friends/interacting with peers.
1. Connecting with your child is one of the best ways to promote mental wellbeing. Strong connections provide meaning and a sense of belonging. Examples: Find ordinary moments in the day and make them fun or silly. Children learn best through play. Play red light, green light while cleaning up the playroom. With your teens, at dinner or in the car, play two truths and a lie about your day, etc.
(* Editor’s Note: For people who are neurodivergent, some of these signs may be correlated with their neurological and genetic makeup and aren’t necessarily red flags by themselves.
• Complains of frequent stomachaches, headaches, or reports physical sensations like feeling fatigued, weighed down, or feeling heavy.
• Has a loss of interest in things they used to enjoy.
• Bouncing back emotionally when upset.
• Cannot demonstrate or recognize emotional expressions (happy, mad, sad, worried, etc.) on faces, drawings, and/or visually.
Doing well means:
• Has challenges calming down once upset.
• Sleeps too much or too little.
• Spends more time alone, or avoids social gatherings.
• Being able to express their emotions- both positive and challenging emotions.
• Having confidence in one’s abilities.
• Doing activities that bring joy.
• Has a decline in school performance.
2. Talk about mental health and feelings. When your child is feeling a particular emotion, tell them what you are observing. Acknowledge the emotion and talk about how that emotion makes their body feel. Encourage your child to name the emotion they are feeling. Example: “You look really mad. I see your face is red and your hands are fisted. Are you feeling mad?” Once they are calm, talk with your child about what made them feel that way, and discuss appropriate and rational ways to behave or respond when feeling strong emotions.
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• Feeling good about who one is.
If you wish to contact us, the best way to navigate support for your child is to call BOLD Center at (971) 249-2653 or visit our website at www.boldpediatrictherapy.com.
We can offer a variety of therapeutic approaches to focus upon each person’s unique make up. We partner with developmental pediatricians, psychologists, educational specialists, and other team members to support coordination of care. We believe that disability or developmental challenges create opportunities for us all to find new solutions that will work for each unique person.
How can BOLD Pediatric Therapy help?
5. Find enjoyable activities. Participate in things that are meaningful to your child and your family. Participate in activities that promote positive emotions like joy, happiness, and contentment. Group activities like sports, clubs, or social peer groups promote a sense of belonging and create a community of people your child builds a connection with.
Our intake process allows families to ask questions and share what they might be seeking for their child at this point in time. We will listen to you and your child as a valued
7. Take care of your own mental wellbeing. One of the best ways for children to learn that mental health is just as important as physical health is by observing you as a caregiver put your mental health first. When you are feeling mentally well, it is much easier to support your child in building positive mental health skills.
1. The United States Public Health Service. Office of the Surgeon General. (2021). Protecting youth mental health: The U.S. surgeon general’s advisory. U.S. Department of Public Health
4.https://doi.org/10.7139/2017.978-1-56900-470-8
Promoting Positive Mental Health in Families. (n.a.). Every Moment Counts. Retrieved July 2022, from 5.https://everymomentcounts.org/guiding-philosophy-goals/Theberath,M.,Bauer,D.,Chen,W.,Salinas,M.,Mohabbat,
3. Bazyk, S. (2011). Promotion of positive mental health in children and youth: guiding framework for occupational therapy. In S. Bazyk (Eds.), Mental health promotion: Prevention, and intervention with children and youth (P.4). American Occupational Therapy Association Press.
Hailey Johnson has her doctorate in occupational therapy and works at BOLD Pediatric Therapy Center. She is passionate about mental health promotion for children and youth, and values every individual’s unique exceptionalities.
6. Make sure basic needs are met. Being well rested, feeling safe, being hydrated, and eating nourishing foods are a foundation for mental health. We’ve all had days where we feel “blah” because we didn’t get enough sleep and missed breakfast. Have you ever seen your child before a meal irritable or throw tantrums and then become a whole new person after dinner?
A. B., Yang, J., Chon, T. Y., Bauer, B. A., & Wahner-Roedler, D. L. (2022). Effects of COVID-19 pandemic on mental health of children and adolescents: A systematic review of survey studies. SAGE open medicine https://doi.org/10.1177/20503121221086712
www. spectrumlife.org
3. Model coping skills. When you as a caregiver are feeling a strong or difficult emotion, let your child know. Model for them appropriate ways to return to a place of calm and peace. Example: “I am frustrated right now. I’ve had a difficult day. I’m going on a five-minute walk and need to take some deep breaths before we do any schoolwork tonight.”
Occupational therapists at BOLD guide children and their caregivers in planning, problem-solving, and doing differently to make changes that support positive mental wellness and health. If you notice your child is experiencing some of these behaviors, try some of these strategies and talk to your primary care provider about additional resources that may be helpful.
43 Paving the Path to Mental Wellbeing, continued from page 42
BOLD Pediatric Therapy Center is located at 1815 NW 169th Place, Suite 3070, Beaverton OR 97006. We are just off Highway 26.
Treatment.(n.a.). Ruderman Family Foundation. Retrieved July, 2022, from https://bit.ly/rudermanfoundationwatch
member of our team. We empower children and families to live References:boldly!
4. Get Moving. Evidence shows that moving our bodies is one of the most influential ways to alter mood and emotions. Find movement activities you can do with your child. If your child is old enough, explain to them the benefits the movement has on mental health. With younger children, get them moving and then acknowledge how their mood and emotions changed with activity. Moving our bodies is one of the most powerful ways to maintain a state of inner peace.
Editor’s note: Also see Spectrum Life Magazine’s feature on BOLD Pediatric Therapy (Winter 2018): https://bit.ly/boldptc
2.youth-mental-health-advisory.pdfhttps://www.hhs.gov/sites/default/files/surgeon-general-Services.WATCH:ItTakes8-10YearstoSeekMentalHealth
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As the Washington client base began to grow, I started to explore the option of having a second location. In 2016, we opened our first Washington location. With the success of expanding into Washington, I searched for other communities that needed our services.
Seeing the need for services in these two specific areas, we decided to expand once again. In 2018 we began serving the Central Oregon area at Boss Sports Performance of Bend, OR, and we’ll be opening a location this Fall (October 2022) at CrossFit Evviva in Eugene, OR.
We were only working on basic classroom behaviors, let alone retaining information from his lessons. I didn’t see the reason that the expectations were different for him in his physical education class. Curious, I asked his teacher why.
self-advocates, nonprofits, and business leaders throughout the week and volunteering at weekend events became the norm. This allowed me to create many positive connections that I retain to this day with influential people within the local disability community.
EXPANSION
HEALTH + WELLNESS 44 www. spectrumlife.org Continued on next page
I firmly believe in the saying, “No one cares how much you know until they know how much you care.” I began searching out volunteer opportunities within the Portland autism Meetingcommunity.withlocalautistic
On Saturday, September 23rd, 2006, my life changed forever. Playing linebacker for Lewis & Clark College, I tore my ACL in Colorado during a game against Colorado College. I remember it like it was yesterday and never would have imagined that it would be the catalyst for creating something like Specialty Athletic Training.
Although he had a difficult time processing what the heck was going on when they played group games, he was physically able to follow along during the warm-up and other fitness tests that his peers were expected to do.
It also allowed me to put my face and name out there to youth, adults, and families attending local community events. You will continue to see Specialty Athletic Training at events, as we appreciate the opportunity to give back to the community that we serve.
Serving the community is the primary reason behind our expansion over the years. Once word spread about Specialty Athletic Training, we began getting clients making a 30-minute drive from across the river in Vancouver, WA.
The injury happened early enough in the season that I was able to get a “medical redshirt” and receive one more year of eligibility. I left myself two credits shy of graduating on time so that I could be enrolled in school and play one more year. That last semester I earned the remaining credits by taking an independent study class, which was a paper about my introduction to the world of autism.
My only experience working in the field was working with Benjamin as an Applied Behavior Analysis (ABA) therapist for six months at a Portland-based ABA clinic. Working with clients that can often be exploited, I knew that earning trust would be my biggest challenge getting started.
The kids started each class by running four laps around the gym. Ben was only expected to run two. After speaking with the teacher, he noticed that Ben would become visibly agitated around the second lap. He wanted to make sure that Ben was included in the class, but understandably, he couldn’t direct all his attention to only Ben. So, I went to the source to see what was going on and asked Ben directly.
During my time serving on the board for the Autism Society of Oregon, a common theme seemed to be that many of the critical services that families needed were Portland-based. It was common for families from Central Oregon and Lane County to make the drive to Portland to get the help that their children needed.
After two laps, he would begin to sweat, which freaked him out. He didn’t understand why this watery substance was coming out of his body. No one ever explained to him that sweating is your body’s way of cooling itself off. To this day, he still doesn’t like the sensation of sweating, but he understands the “why” behind it. That experience is the reason why I founded Specialty Athletic Training five years later.
or family connection to the disability community.
By Ryan Lockard, CSCS*D, CSPS*D
10 Years of Specialty Athletic Training and Lessons Learned
I found a job on Craigslist working with an autistic 12-year-old boy during the summer before that last semester. Benjamin attended a private school, and I was hired by his family as his 1:1 aide. I immediately noticed that the expectations for him in school were lower than his peers.
In 2012, I was an assistant football coach at Lewis & Clark College. I started training Benjamin at the college and started networking in the disability community to grow our client base. The biggest barrier to getting started was earning the community’s trust. I was 27 years old at the time, with no kids
Relationships are the heart of our services.
THE BEGINNING
GAINING TRUST
This is the reason why I still try to “stay in the know” about video games, movies, and other things that our clients are interested in. I still haven’t watched anime but I wouldn’t be surprised if that changes by the next Spectrum Life issue!
LIFELONG LEARNING
COVID exposed ways that the business was inefficient, as well as made us create virtual training options. We developed virtual training services and began offering yoga. Although virtual sessions are a great alternative, there is no substitute for the relationships and connections that can be made in person.
RELATIONSHIPS
Individuals with disabilities are at an increased risk of becoming obese, which can lead to several chronic and life-threatening health issues. The National Library of Medicine cites that over 50% of adults with disabilities are obese, as well as roughly 30% of children with disabilities (30.4% of children with autism are obese). There are several factors that contribute to these statistics; medications that contribute to weight gain, poor dietary choices, sedentary lifestyles, and lack of accessibility to fitness centers and qualified fitness professionals.
By connecting with autistic self-advocates and other professionals, and listening with open ears to our clients, I am looking forward to learning even more in the next 10 years and continuing to improve how we are serving autism communities.
FIGHTING AGAINST THE ODDS
Relationships are the heart of our services. One of the biggest lessons I learned working with Ben at the beginning was to be myself. Initially, I tried to imitate the interactions and relationship that he had with my superior. It was artificial and uncomfortable. It wasn’t me, and he was able to see right through it. Our relationship really began to develop and blossom once I quit trying to be someone that I wasn’t.
On March 11th, we received notice that Lewis & Clark College was no longer allowing outside visitors on campus. The following Monday, March 16th, the executive order from the governor shut everything down. Like all businesses, we immediately offered virtual options, worked out the kinks as we went, and began converting my garage into a gym to serve local clients. Talk about a pivot!
COVID-19
In March of 2020, every business had to adapt and learn different ways to provide their services. We were training out of four locations at the time; none of them were our own facilities. This also meant we were at the grace of each owner and the regulations that were placed on them by the state.
Ryan Lockard is the Founder and CEO of Specialty Athletic Training, a personal training company located in the Portland Metro area and Central Oregon that specializes in fitness programs for children and adults with disabilities. He is a Certified Strength and Conditioning Specialist (NCSA), Certified Special Populations Specialist (NSCA), and currently serves on the board of directors for the Autism Society of America. He can be reached at Ryan@SpecialtyAthleticTraining.com or www.SpecialtyAthleticTraining.com
I also took a genuine interest in his hobbies and fascinations. Suddenly, I found myself in line to watch the newest Disney or Pixar movie on opening night. I wanted to make sure that we shared a common interest and was commonly seeking other common interests.
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4545www. spectrumlife.org 10 Years of Specialty Athletic Training and Lessons Learned, continued from page 44
We are often asked, “How do you train an autistic individual?” The answer is simple, “Just like you would train anyone else.” Nothing changes with programming or exercise selection. Society has many unfair stigmas that make people unsure of how to approach or work with people with disabilities, and the fitness industry is no different. I have found that the importance of presuming competence, using direct communication, and building trust is often overlooked or ignored. Yet, all have been instrumental in working with our clients to make sure that they have an enjoyable and successful fitness experience.
During my last semester of college, I thought that I had learned a lot about autism. I had no idea that it was just the tip of the iceberg and how much of the information that I had consumed would be disproven during my experience.
PhotographyMooreRebekahMaryofcourtesyPhoto
As an outsider of any business that succeeds, their success seems to be very linear. However, any business owner can tell you that it is anything but. You are constantly learning and pivoting, and many times, it seems like you are taking two steps forward and one step back. Sometimes change and growth happen out of necessity. Nothing is a better example of this than the COVID-19 pandemic.
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A Day in the Life of Dr. Anson Service................................................... 48 Spectrum Life Directory ................................................................................ 54 IN THIS SECTION therapy THERAPEUTIC OPTIONS AND RESOURCES
47 PEDIATRIC THERAPY CENTER Supporting Children With Developmental Needs • Occupational Therapy • Physical Therapy • Speech Therapy • Groups & Camps 971.249.2653 1815 NW 169th Place • www.BOLDPediatrictherapy.comBeaverton WWW.SPECTRUMLIFE.ORG Spectrum Life Magazine uniquely showcases your business to youth, adults and families in the autism community. Our nonprofit is now accepting New Ads and Sponsorships. For business inquiries, email: SpectrumLife@AutismEmpowerment.orgorcall(360)852-8369 Be Here!Featured www. spectrumlife.org
was married when his wife asked me about some traits she noticed that I never realized were autism because... that’s just how he was.
I wake at 6 am, shower, get ready, grab my caffeine, and drive 40 minutes to work. That 40 minutes to and from is the only time I have to think, process, catch up with family and friends on the phone, and educate myself listening to audiobooks.
A Mental Health Professional and Advocate Who is Devoted to Family
Also, client after client, who had similar stories to my wife, led me to present her with what I knew about autism at the time. That night was monumental. It was like she finally got the plot twist to a movie or book as so many of the experiences she had in her life made more sense in that context. Of course, that process was long and ongoing. Not long after, I came to a point where I was able to assemble and organize my own autistic traits and features from my childhood to the present day in my head and on paper, and it became glaringly obvious. That was a long process as well.
At 9 am, I see my first client of the day, either a therapy client or an assessment client.
Additionally, I spoke with colleagues of mine from graduate school who had received a diagnosis of autism after graduate school and was able to resonate with their life experiences. I then sought the help of a specialist who could provide me with an assessment. Unfortunately, my insurance would not pay because... they kind of suck when it comes to mental health, so I paid out of pocket and was assessed and received a diagnosis of ASD.
Dr. Anson Service has a Doctorate of Clinical Psychology and is a licensed mental health counselor and advocate. He is also autistic and has ADHD. He and his team, through helpingthemselvesthemsupport,acceptance,journeypeopleneurodivergentandServices,PsychologicalAdventureassesscounselthroughaofdiscovery,andhelpingunderstandandthemto
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By Jenny Bristol, Illustrations by Rebecca Burgess
Lunch is at noon, where I retreat to one of the four restaurants I prefer to eat at, not because I like the food, but because I know what to expect. I prefer to sit at the same booth in the back corner of the restaurant facing the front with my earbuds and watch videos or just peruse the internet while I eat. This hour of lunch is important because it is a time for me to recharge somewhat as I am usually exhausted by this point of the day.
I learned of my ADHD in my early 30s when a friend of mine was diagnosed, and I compared our traits and struggles. He was medicated and I wanted to try medication, so I spoke with my doctor. Because I unknowingly struggled with ARFID (Avoidant Restrictive Food Intake Disorder), I was underweight and my doctor would not prescribe me stimulants, so I had to self-medicate with copious amounts of caffeine. I did that until I finally received a diagnosis ten years later.
48 www. spectrumlife.org Continued on next page THERAPY
thrive through the lens of their newfound understanding.
Dr. Service has a wife and three adult sons, and treasures his relationship with them all. When he’s not remodeling houses with his sons or hiking with his wife, he finds time to write books and articles, as well as go on other family adventures, both near and far, building memories and strengthening his ties.
The signs were all too obvious. I was an excellent student as a college student, but the signs were still there. For autism, it was more like a video game where I might unlock different levels as I progressed. The levels represented my understanding of autism and myself, and the more I understood autism, the more evident my own autistic traits and features were, and the more were unlocked for me to see and understand. My son was the first to be identified after he
What did your journey to learning you were autistic and neurodivergent look like? How did you figure out you were autistic?
What does a typical work day look like for you (or, if there isn’t a typical day, describe one that is representative of your life)?
of Dr. Anson Service
Once I get to the office at 7:15, I get to writing psychological assessment reports. If there are none of those to write, I do research on autism and possibly record a video about it. I also try to catch up on email and deal with business issues.
Assessment sessions or therapy begins at 1 pm and that goes until 6 or 6:30 with spatterings of questions from other clinicians regarding testing protocols and reports.
Then, the drive home. Once I am home, I am still in GO MODE. This means I feel like I need to do something, go somewhere, and usually it doesn’t matter what I do as long
If I have a cancellation, I will catch up with employees, check in on therapists, and do some more writing. Of course, I call my wife several times throughout the day just to say hi and check in and see how she and my sons are doing. I also catch up on business things, such as taxes, employee things, and the like. Between my wife and I, we run four businesses, so there is always something to do.
I work at the clinic three days per week, and at least one day per week, often two, I spend with my wife doing something adventurous. I am not always excited to hike, but I really
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as it is with my wife or family. My body does not want to sit. I pace, bounce my leg, rock, or do something else physically if I am not able to engage in some sort of activity that I deem useful and productive. I try to settle down after that and my wife and I watch a TV show together, and I will try to cook something for dinner. Cooking has become a positive experience for me, and I enjoy my time in the kitchen at that time of day. I usually get to bed around 11 pm to 4 am, depending on if I can sleep or not.
I realized a while ago that I never agreed to the expectations the world has thrust upon me, so I am constantly trying to monitor the world’s expectations and my expectations of the world and do what is realistic. Just because I am a mental health professional does not mean I have it all figured out. Far from it. As I say, it is a process, and it never ends.
enjoy it once I get out there. Really, I just want to hang out with my wife, so for me, it doesn’t matter what we do. I feel like we must continually work on our relationship with intention, or it can become stagnant. Nobody is immune to that. The other day or two I spend working on our business of home renovation.
I tend to overextend myself for a number of reasons if I am not careful, so being able to politely decline being part of things that are really great in the community has been tough but necessary.
Have you experienced discrimination or bullying because of your autism or autistic traits?
Continued on next page A Day in the Life of Doctor Anson Service, continued from page 49
Photo courtesy of Dr. Anson Service
In the past, my special interests included music, BMX bicycling, tropical fish, business, psychology, construction,
I didn’t know these things until I really took time to realize that I have been working toward accommodating myself my whole life, but was unsuccessful because of not feeling like I deserve accommodation, or not wanting to stand out, or not knowing that I was overextending myself because I wasn’t aware of parts of my own emotions and feelings, etc. I still do not do enough to accommodate myself, but I am working on it.
What kinds of changes or accommodations do you make in your life to allow you to be successful?
What hobbies or interests do you have outside of your work? How does being autistic help or hinder your work or hobbies?
I have had to resign from a lot of extracurricular activities and responsibilities. At one point, I was simultaneously going to school full-time, running two successful businesses, playing in a professional band, was on the board of a nonprofit, taught music performance in an afterschool program to 60 children, volunteered 6-12 hours per week at a church, and was trying to be the best husband and father I could be. I am leaving some things out, but you get the idea. Overall, it wasn’t working, and my family and I suffered for it.
I also enjoy working with my hands, and my sons and I have a business where we take homes that are almost ready to be torn down but have something cool about them and save them, renovating them, etc. That is fun. I enjoy seeing a project progress like that. Eventually, I would like to get back into music production, but it has been years since I became burned out on that after more than a decade of music being my life.
cars—especially classic cars—and various mental health topics. Autism helps me get into an interest more than most others, and I find a lot of satisfaction in having something work successfully that once puzzled me. Even something like building a septic system that is a pressure system run by siphon is fascinating to me.
This is interesting because, at this time, I have no intense special interests. I believe I am too split between too many projects right now to allow a special interest to take my time and energy. When I get into something, I usually get really into and exhaust it, but that depends on the amount of time I have to spend on it, which usually is not much. Right now, I could get more into research and video making, but I have so many other things to do that my life will suffer if I don’t tend to those things and put off research and video making for a bit, but I am almost ready to get back into it again.
I also insist on driving a quiet car, I do not use overhead lighting unless needed, and I eliminate a lot of sensory problems for myself. Everything from how I dress to what and where I eat honors my autism now as much as possible. I cannot eat at Baja Fresh because of the chairs and the sounds they make. I cannot eat at certain Taco Bells because of their lighting. I prefer Taco Time in two specific locations because of lighting and ambiance.
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This is tough, because much of the bullying I experienced growing up and as an adult, I didn’t realize was bullying. Even as an older adult, I found myself being bullied, talked
I also hire people to do things I don’t do well that overwhelm me and burn me out. I recognize my executive functioning side of ADHD is not always great, so I hire excellent people to do what I know I don’t like to do. Basically, I try to make the world fit me, where I am, rather than trying to fit myself to the world.
I have also experienced discrimination when starting to tell other professionals or people in the healthcare industry about my autism. I have been warned by a psychiatrist to not disclose my autism because he thought it would eliminate or decrease my future professional opportunities.
down to, talked into things, and more, not realizing what was happening. I remember being called “weird” a lot, and there is a look that I remember getting far too often from people that I understand now to be sheer confusion on their part about me. People tend to want to figure people out quickly, and many autistic people cannot be figured out quickly, so there is confusion, and sometimes even fear.
The way a neurotypical person behaves in a relationship may work well when both are neurotypical, but when a neurodivergent person is in a relationship, many of those same rules and behaviors may not apply as much. So, be wary of all of the advice given on how to make a relationship work.
Photos courtesy of Dr. Anson Service
Also, find your people. Birds of a feather flock together. You may find better support and understanding from other like-minded individuals. Not always, but hopefully.
Advice is interesting. I find that people don’t typically follow advice, and when they do, they can blame either their success or failure on the person giving the advice, but I have some ideas that one might consider.
The most discrimination I have received, and the most I have seen others receive, is in a healthcare setting with medical and mental health professionals. Ironic, isn’t it?
I tend to believe people when they tell me things, even if they aren’t telling the truth, which has caused problems throughout my life. It is something I just try to watch out for, while still giving people the benefit of the doubt. I don’t want to think the worst of people, so I rely more on others to help me understand the intentions of others when possible. The hardest part is when I think I understand the intentions of others, but really don’t.
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What advice would you give parents of autistic kids about the best ways to support their kids in becoming their best selves? What advice from the so-called “experts” do you think parents should ignore?
I was told, never go to bed angry with your partner. That sounds fine, but, in reality, sometimes an autistic individual needs time for their brain to sleep before addressing a point of disagreement. For me, I need to analyze a problem, ask questions, and communicate, but that doesn’t always work in the moment.
Also, like I mentioned, it is important to set up your life to fit you and honor your autism.
There is this idea that if a kid doesn’t want to do something that the parent thinks is a good thing, that they can force the child, and the child may refuse, may cry, may not like it, but after they go through the experience, they will come out victorious having accomplished a hard thing and will be richer for the experience. It seems to me that doesn’t always work like that for young autistic people.
What advice would you give to a young or teenage autistic person to help them live their best life, or what advice would you give an autistic adult to help them feel supported in their continuing journey?
In my experience, if they have to do something they really don’t want to do, they may come out on the other end of it not only hating the experience, hating anything that has to do with the experience, and hating anyone associated with the experience, they also will never do it again. This can have a detrimental effect on the parent/child relationship.
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Recognize that there is a growing body of research that suggests that autism changes its presentation based on so many factors, and a person’s phase in life is one. It looks one way for a person who is 7, and different when they are 17, and different again at 37, and different at 57, and different at 77. So, essentially, allow the opportunity to be accepting of the living, breathing autistic you that is ever-changing.
Lastly, people who are loved ones, friends, or partners have a lot of responsibility to educate themselves on the most up-to-date autism information that is supplied by autistic individuals.
What is your favorite autistic myth to dispel?
I would tell myself that it is okay to be who I am, knowing I was still developing my sense of self, and that it is okay to try different versions of myself on for size to see how it fits. I would tell myself that overall, it’s going to be okay, but work your butt off now to be able to breathe a little more when I am older.
If you could go back in time, what would you tell your younger, undiagnosed self?
A previous office manager told me once, “You are worth it.” Not really advice, but it helped me feel like I am worthy and worth the time and effort I put into myself. Having grown up in a system that conditioned me to predicate my worth on how much I do NOT focus on being comfortable with who I am, this resonated with me, and is something I still try to remember.
Because of your professional background, do you think you’re having an easier time getting the message across to autistic people and their families that autism is just a difference rather than a deficiency?
When you have experienced autism your whole life, you tend to be able to recognize it in others. There is a flood of respect and humility that comes with seeing another autistic individual, or at the very least, someone who is expressing traits and features consistent with what I know about autism.
I think my favorites are tied for first place:
Continued on next page A Day in the Life of Doctor Anson Service, continued from page 51
How do you feel that being autistic has helped you recognize autism in others? What are your favorite parts about helping someone get diagnosed and finally understanding themselves?
I believe parents must strike a careful balance between allowing autism to be a reason for not doing some things, but not an excuse to not do anything hard. They still have to do hard things, but there is a way to do it, and coming at it with tough love and rigidity often seems to have the opposite outcome of what is expected.
What was one piece of advice you received that helped you be comfortable with who you are?
Oh wow! I could write a book on this one. It depends on what I am able to tell myself. Can I disclose ADHD and autism? Or is it like Back to the Future where I can’t say anything that will change the outcome? Well, I suppose I would try to tell myself who to avoid and who to hang out with.
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Yes. I take my background seriously. I often forget that people may listen to me a little more than others without a doctorate degree, but I also recognize many people have been dismissed by the medical community and I may represent another medical professional that doesn’t get it at first.
If I could take a manual of myself to myself with my diagnoses and what they mean, because the scientific community was not aware of the various flavors of autism like we are today, I would do that, along with some instructions. But I also realize my ADHD and impulsivity at that age would not really allow me to read through the manual and I would just pretend I knew what I was doing so I could go ride my bike and have fun.
When people have partners or loved ones who are autistic, I feel like they have a hard time NOT seeing another person’s autism through the framework of how it affects them. “How does Johnny’s autism affect my life?” “Jane cannot use autism as an excuse to get out of doing chores.” “I don’t like how Penny talks to me when she is irritated. It is hurtful.”
Then, being married to an autistic individual for years, and neurodivergent children, all of which present differently, it allows me to see it in others, and often.
This tends to be difficult with autistic parents, often undiagnosed, when dealing with autistic children, because the parents had to endure various types of torture growing up and insist that it won’t kill the kid. Well, suicide rates amongst the autistic are alarmingly high, so indeed, sometimes it can kill. I know that is a tough note to leave off on, but until we address autism parenting issues, we will continue to have children who will eventually feel unsupported and traumatized.
I think the biggest challenge is human nature. Human nature focuses on what an individual is feeling and experiencing, and often, autism is not a concern for most neurotypical people. As such, they usually do not give it any more than a passing thought or they may even see it as a party trick if someone is able to do something extraordinary who is also autistic.
All of these types of statements come from how Penny’s autism affects another person rather than trying to understand how Penny really feels. It can’t be fun for Penny to constantly be irritated. I’m sure Johnny doesn’t like having a meltdown in the middle of the supermarket. Jane would likely love to have energy and executive functioning to do her chores without being asked 20 times. Really understanding an autistic individual’s feelings and emotions is key, and empathy, non-defensiveness, and compassion are required.
I try to help people see why it may be considered a deficiency, because that is the disordered world we live in. But I try to help them see that the difference can be wonderful and challenging all at the same time.
What are the biggest challenges you’ve had when trying to educate the neurotypical world about autistic people?
My favorite part is when people discover that what they have been experiencing has a name, autism, and the lights start to go on, one by one, in their mind. So many questions begin to be answered. I see people cry tears of joy, or just matterof-factly say, “Okay, that makes sense. Now what?” Both reactions are wonderful. Helping people identify these traits as autism and not character flaws or something that is to be feared is wonderful.
I just hope people understand that even though I am firmly planted with the idea that autism and ADHD are differences, there are still struggles. These struggles can take up a lot of emotional and mental currency and energy. It is okay to mess up. It is okay to cry, and to meltdown. It is okay to cut people off from you. It is okay to feel deeply hurt and rejected even if the person didn’t mean it that way.
Is there anything else you’d like to share?
The more we allow ourselves and others to feel their way through life, making mistakes, yet feeling supported, allowing others to feel safe and secure in knowing they have people that get them, the better off we will all be.
1. That autistic people can’t make eye contact (some do, some don’t, some make such intense eye contact it makes neurotypical people uncomfortable).
I feel like we have thrown out the standard rule book on parenting and even being adults. We decided several years ago to make our own rules, and that is when things turned around for us.
I am so busy that I do not get to emails as often as I would like, so if people understand I may not see their email right away, they can email at neurodivergentdoctor@yahoo.com Also, contacting me through YouTube and Instagram tends to work.
We are being told on a constant basis that we should not feel the way we feel, should not act the way we act, and there is no room for error. In this age of hypercritical awareness, it is understandable that people are paralyzed with anxiety to make any move because someone will undoubtedly be there to cut you down.
Plus, my kids (all adults now) are all hilarious. Very smart humor, very different. I really think they are brilliant in so many ways, and I would not trade their brain styles for any other.
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Carl Rogers coined the term “unconditional positive regard,” which is having an attitude of complete acceptance and love, whether for yourself or for someone else. Each of us are human, having different experiences in the same arena. And sometimes, we need a little help being us.
3. That autism has a “look.” Yeeeah, there is no autistic “look.”
What are some of your favorite parts of being an autistic/ neurodivergent parent of neurodivergent kids?
2. That autistic people do not do well socially. Also wrong. Some have learned to be social. Some have a hyperfixation on social skills (social interaction was a special interest of mine for many years as I was fascinated why people do what they do).
Instagram: @NeurodivergentDoctor
A Day in the Life of Doctor Anson Service, continued from page 52
Rebecca Burgess is a comic artist and illustrator working in the UK, creating award winning published and small press work. Along with drawing comics for their day job, Rebecca also loves drawing webcomics in their free time. Being autistic, they are particularly passionate about bringing more autistic characters into comics and stories! Outside of drawing comics and cuddling their cat, Rebecca also loves playing RPGs with friends, going on deep dives into history and growing vegetables in their humble Bristol garden. Visit www.rebeccaburgess.co.uk
Thirty years ago, there were certain expectations placed upon people, and you were shamed if you did not abide by those. That didn’t work for me back then, but now I am in a position where I understand that and have been able to create a life more on our terms.
What are the best ways for people to connect with you?
YouTube: https://www.youtube.com/c/NeurodivergentDoctor
Jenny Bristol is a Gen-Xer who was diagnosed autistic at age 45 and has been having a series of lightbulb moments ever since, finally understanding her entire existence. She is an autistic advocate, freelance writer and author of several books, Editor-in-Chief of the geeky parenting blog GeekMom.com, and parent to two incredible autistic adults. She works hard to promote the social model of autism rather than the medical model, encouraging people to understand that a child’s behavior is a form of communication and a reflection of their inner struggle, not something to be punished. Visit www.JennyBristol.com
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