Autism Empowerment Spectrum Life Magazine Summer 2024 Issue
L ightly-weighted for an extra sense of security and stability, the TwiddleNathan helps youngsters find that “just-right zone” for maintaining attention and appropriate behavior for tasks and activities. Crafted from cozy, durable fabrics and plush fleece, the Nathan features high-grade fidgets attached with ribbon loops that snap, to enable switching around and personalizing fidgets for variety’s sake, training purposes, or the child’s own preferences.
Ideal for home, therapy clinics, and ”safe spaces” at school and other group settings.
TWIDDLE®NATHAN
7
FEATURED SECTIONS
4
DO OTHERS EVEN WANT TO UNDERSTAND ME?
37 From the Publisher
New seasons provide new reasons for Autistic enrichment and understanding.
EDUCATION
Mainstreaming and Inclusion Explained Clarifying misunderstood concepts in schools.
Connections for our Community Content, Community, and Connection for a brighter future.
ADVOCACy
Do Others Even Want to Understand Me?
Insights on the responsibility of others to understand Autistic individuals.
LIFESpAN Testimony
Authentically embrace your unique path.
Poem by Karen Krejcha.
A Day in the Life of Magnus Hedemark Advocate for authenticity, personal growth, and exploration.
#AskingAutistics - Do You Hate Grocery Stores?
Lyric Rivera: Dealing with the grocery store nemesis.
RECREATION
Adventure Ready NW
Adaptive Recreation: Empowering Lives that Thrive.
Vancouver on Film: Hold My Beer
Vancouver WA film celebrates Neurodivergence, Craft Beer, and Community. 7 14 16 5
43
From Classroom Struggles to Homeschool Triumphs Insight from Niko Boskovic, a nonspeaking student.
HEALTH + WELLNESS
Introduction to NeuroDiversity from a NeuroDivergent Lens
#AskingAutistics: Separation from NeuroTypical society.
Navigating with Niko: Feeling the Storm Understanding family stress as a nonspeaking Autistic.
THERApy
49
40 46 52 24 27 32 55
Echolalia: When Nature Calls Understanding the meaning behind repeated phrases.
Autism, Growing Up, and Defining Friends
Promoting age-appropriate respect in social groups.
Welcome to the Summer 2024 edition of Spectrum Life Magazine!
My name is Karen Krejcha, Executive Director and Co-Founder of Autism Empowerment and the Editor of Spectrum Life Magazine. This issue celebrates Spectrum Life’s 8th anniversary of publication and Autism Empowerment’s 13th anniversary as a 501(c)3 nonprofit organization.
We usually publish Spring, Summer, Fall, and Winter issues. This year, we were unable to publish in the spring due to a death in the immediate family. Between this, our youngest son recently graduating high school, and all the life stuff in between, my husband and I are in a very different season of our lives than we were just a couple of years ago. And so are many of you!
New seasons provide new reasons at Autism Empowerment for neurodiverse enrichment, support, and Connections for our Community (page 5). Our cover article, Do Others Even Want to Understand Me? (page 7) delves into the ethical imperative of understanding and empathy towards people on the autism spectrum.
Testimony (page 14) is a powerful poem inspiring each of us to embrace our unique, authentic path. A Day in the Life of Magnus Hedemark (page 16) shares advice and inspiration from a seasoned tech professional. #AskingAutistics: Do You Hate Grocery Stores? (page 24) and From Classroom Struggles to Homeschool Triumphs (page 40) share lived experiences from multiple autistic individuals.
Introduction to NeuroDiversity from a NeuroDivergent Lens (page 43), Autism, Growing Up, and Defining Friends (page 52), and Navigating with Niko: Feeling the Storm (page 46) additionally provide educational perspectives from autistic adults.
Continuing the education, Mainstreaming and Inclusion Explained (page 37) clarifies commonly misunderstood concepts, and Echolalia: When Nature Calls (page 49) offers a deeper understanding of repeated phrases and their significance.
Finally, for fun, Adventure Ready NW (page 27) highlights adaptive adventurous recreation, and our local feature Vancouver on Film: Hold My Beer (page 32) creatively celebrates neurodivergence, craft beer, and community in Vancouver, WA.
Wherever you are on your life journey, we hope you feel enriched and inspired after reading this issue. Have an awesome summer!
Karen Krejcha
Executive Director & Co-Founder: Autism Empowerment™
Editor: Spectrum Life Magazine™
SUMMER 2024 | VOLUME 14, ISSUE 1
SPECTRUM LIFE MAGAZINE TM
A program of Autism Empowerment TM
Karen Krejcha, Autism Empowerment, Publisher
Dave Born, Graphic Designer
Editorial Advisory Board:
Aaron Blackwelder
Amy Donaldson, Ph.D, CCC-SLP
Laurie Drapela, Ph.D
John Krejcha
Tara O’Gorman, MSW
Anson Service, Psy.D, LMHC
Brian Tashima
Mailing address: Autism Empowerment
P. O. Box 871676 Vancouver, WA 98687 (360) 852-8369
Autism Empowerment is a 501(c)3 nonprofit devoted to promoting a culture of acceptance and empowerment for children, teens, adults and families within Autism and Neurodiverse communities.
Dr. Anson Service shares insights on the shared responsibility we all have to understand autistic people and foster an inclusive society. (page 7)
www.
Photo courtesy of Natalia Blauth
Connections for our Community
Celebrating 13 years of Autism Empowerment and 8 years of Spectrum Life Magazine!
In
other words, 13 years of Celebrating You and Your Potential!
By John Krejcha
Hi! I am John Krejcha, Program Director and Co-Founder of Autism Empowerment, the nonprofit that publishes and creates Spectrum Life Magazine. Each quarter, I share updates and insights into our programs and services.
On June 3rd, 2024, Autism Empowerment celebrated our 13th anniversary. When we founded Autism Empowerment, we were guided by our Four Foundational Pillars of Positivity: Accept, Enrich, Inspire, and Empower. These pillars remain at the core of who we are and are embedded in every program, service and resource we provide.
Over the past 13 years, our organization has grown and evolved. A significant milestone was eight years ago when Autism Empowerment began publishing Spectrum Life Magazine. This expansion allowed us to spread a culture of acceptance and enrichment even further, highlighting the incredible allies, resources, businesses, and nonprofit organizations who positively serve neurodiverse and neurodivergent communities. People like me. People like you.
Within Spectrum Life Magazine, we offer storytelling from authentic lived experiences intended to enrich and inspire our readers. We also cover a wide range of feature topics, from advocacy to health and wellness, aiming to educate, inform, entertain, and challenge readers to consider how they view others within our community.
The Autism Empowerment team considers ourselves community connectors and enthusiastic supporters of helping people live awesome lives with high potential. This is why our magazine, websites, and educational media programs always prioritize shining a light on amazing people and organizations doing positive work. We are blessed to highlight these efforts and make various resources known and accessible to those who need them.
We don’t want anyone to feel alone on their journey or the journey of those they support. By providing educational resources from authentic autistic and neurodivergent perspectives, individuals can see themselves reflected within. Family members, friends, educators, service providers, and other allies are included within our pages too. Purposeful inclusion helps lead to self-acceptance, personal growth, and feeling seen and heard.
Often, people ask, “What do you do?” and what they really mean is, “How can you help me?” For us, no matter what program, resource, or support we offer, the underlying mission is about planting seeds of acceptance, enrichment, inspiration, and empowerment. We strive to empower individuals to achieve their full potential and highest quality of life—educationally, emotionally, physically, socially, and spiritually.
This fall, we are excited to announce the return of the Autism Empowerment Podcast, adding to our resources that include Spectrum Life Magazine and our two primary websites, AutismEmpowerment.org and SpectrumLife.org
As we move forward, look for us to continue advocating, enriching, and inspiring through print, audio, and video storytelling and personal testimony.
Come as you are! Let your Light shine, “Sunny” John Krejcha
EMpOWERING CHANGE WITHIN THE AUTISM COMMUNITy
Photo credit: Kiana Bosman
Do Others Even Want to Understand Me? Insights on the Responsibility of Others to Understand Autistic Individuals
By Dr. Anson Service, Psy.D., LMHC aka Neurodivergent Doctor
In my psychological assessment and counseling clinic, most people who are newly diagnosed as adults have been on the journey of autism discovery for quite some time before coming to me for a professional diagnosis. Some self-diagnose, while others wrestle with questions, doubts, imposter syndrome, and other powerful emotions.
I have heard several liken their experience of growing up autistic to that of playing a board game with others but being the only one in the game without instructions or rules. Then, when they finally begin to learn them, the rules and instructions change.
For family members of newly diagnosed individuals (children or adults), their journey into the universe of learning about autism and accepting it may have just begun. Ideally, their journey ahead would be filled with eager learning and growth that would create improved relationships within the family.
They might chuckle looking back on some of the humorous social faux pas and shed tears of grief together for missed opportunities. They may feel anger and resentment, remembering the mistreatment by others who did not have compassion and understanding for them. Overall, a diagnosis in many families can be a growth opportunity that is highly rewarding yet difficult.
Over the thousands of hours I have spent with autistic clients and individuals, assessing, counseling, and advocating, there is something that seems to stand out in this beautiful, wonderous, challenging journey; that is when people, families, and partnerships begin to put it all together; starting to finally play the same game, having the same rules and instructions, sharing the moments that make life worth living, good and bad, and helping each other thrive.
For many families learning about their autistic member, the future looks hopeful. However, I have worked with some families who have been amazingly supportive... at first, only to lose sight of their newfound discovery, reverting to old, tired habits of blame, false labeling, and unattainable expectations within weeks.
This may reflect personality problems with certain individuals in the family rather than intolerance and lack of understanding within the entire family. But the old adage rings true... one person can make a difference, but unfortunately, sometimes that difference can be harmful.
Creating permanent change within a family system can be a challenge, and changing another person can be impossible. Changes are even more difficult in a world that prioritizes, values, and rewards conformity of societal norms, however ridiculous they may be, over understanding and embracing neurodiversity.
For autistic individuals, navigating daily interactions can be fraught with misunderstandings and misconceptions. Simply put, the world is disordered and does not seem to make sense to many autistic individuals. It does not serve them, and there is often very little the autistic person can do to change another person, a family, or the world.
This raises a fundamental question: Do others even want to understand autistic people?
The answer, as complex as it might be, involves recognizing the shared responsibility we all have in fostering an inclusive and empathetic society.
The Struggle for Understanding
Autism spectrum disorder (ASD) is characterized by differences in communication, behavior, and sensory processing. These differences can be challenging for autistic people when interacting with others.
One of the major problems I have heard from many autistic individuals I have interviewed is that the neurotypical majority often expects autistic individuals to adapt to their ways of communication and interaction, while simultaneously professing to be sensitive, accepting, and accommodating to neurodivergent individuals. They say one thing but act very differently.
Continued on page 8
This dissonance can be both unrealistic and unfair to the neurodivergent population. Regardless of various claims by seemingly well-intentioned people and organizations, this places the onus solely on autistic individuals to bridge the gap, ignoring the role that neurotypical people play in fostering mutual understanding.
But in reality, the expectation by society of the neurodivergent is seemingly not to bridge the gap, but for them to shut the hell up and stay in their place. The needs of many individuals with disabilities are misunderstood and denied because it requires effort, time, patience, and resources from a world that seems to be constantly clawing for these things due to ever-increasing demands.
Many autistic individuals I interview tell me they often feel isolated, misunderstood, unimportant, and a burden because others do not take the time and effort to learn about autism, to adapt their communication styles, or provide other accommodations that are helpful.
I am thinking about a recent sign I saw on a cruise ship that my family, most of whom are autistic, recently vacationed on.
This floating city of sweat and bad breath, which consisted mostly of loud noises, bright lights, and people occupying every cubic inch of the boat, put up signs that proudly read that the hour between 8 a.m. and 9 a.m. was “sensory friendly.”
I thought this was interesting, so I waited until the next morning to see what “sensory friendly” meant to this cruise line. As it turned out, this only meant they were going to not scream announcements over the distorted and blown loudspeakers at a decibel that could be heard on land hundreds of miles away.
I am not sure who they consulted with to come up with this genius accommodation, but it certainly was not an autistic person with sound hypersensitivity because it did not make any difference and the cruise director screamed over the loudspeakers within the rooms and hallways anyway.
This type of lack of effort by organizations, governments, families, and others can lead to severe and enduring emotional distress in autistic people, reinforcing a sense of alienation and confirmation that autistic individuals don’t really matter and have no right to a peaceful existence outside of their protected domain, which is often their home bedroom.
A Responsibility to Share
While it is the responsibility of the neurotypical to seek and grow their understanding, it is also the responsibility of as many neurodivergent people as possible to provide accurate and meaningful information, to the best of their abilities.
This does not mean every neurodivergent must write articles and record TikTok videos. Still, any insights and information that can be provided to others will help grow the body of information readily available and can challenge the misinformation that has been damaging our community for millennia.
It is then the responsibility of the neurotypical to receive the information honestly and without reservations or conditions
and respond appropriately. This dual effort encourages more sharing and understanding.
In the past, the world has not created a “safe space” for neurodivergent individuals to share their experiences, let alone live in, yet this is beginning to change. The more information we can share about our lives, loves, interests, and struggles, the more likely we are to develop permanent positive changes.
An Ethical Responsibility to Understand
Understanding and supporting autistic individuals is a moral and ethical responsibility.
While enormous strides have been made to accommodate outwardly apparent physical disabilities, making efforts to understand the less than noticeable disabilities of the neurodivergent must be recognized as an essential part of societal norms.
However, this responsibility should not be a pitiful theatrical attempt for favor, accolades, or votes. It is not even about charity or virtue, but about recognizing the inherent worth and dignity of every individual.
Understanding autism requires a willingness to learn and adapt beyond what might be comfortable. It takes real effort and not feigned interest. It may not be convenient to learn about a person’s presentation of autism, but it is required to understand them better.
It involves listening without judgment, setting aside everything they “know” about autism, and being willing to make major changes within the home or work environment to accommodate certain needs.
It cannot be conditional upon the autistic person meeting certain behavioral standards or expectations.
It means asking questions to clarify information rather than sneakily challenging them as if they are on trial. One must be patient, compassionate, and flexible. It is being able to apologize for mistakes, bad decisions, and misunderstandings rather than defending past problematic behaviors.
When neurotypical individuals take the initiative to understand autistic perspectives, it not only helps autistic individuals feel valued and included but also enriches the lives of the neurotypical individuals by broadening their own perspectives.
How to Understand and Support Autistic People
Educate, Educate, Educate: I cannot stress this enough. Take the time to learn about autism from as many sources as possible including books, social media sites, websites, documentaries, movies, and more.
While some sources may not be representative of your loved one with autism, learning about it from various sources allows you to have a broader understanding of autism. Bonus points are awarded when focusing on the experiences and words of actual autistic people.
If an autistic person shares a video clip or meme, that can be a form of communication, and it is an honor and privilege to be the receiver of that information. Take time and effort to really understand what they are telling you through these various means. They can present the information to you, but they cannot understand it for you.
Be Clear and Direct: Autistic individuals often appreciate clear, direct communication. Avoid using vague language. Say what you mean and mean what you say.
Respect Sensory Sensitivities: Many autistic people have heightened sensory sensitivities. Be mindful of the environment and try to minimize overwhelming stimuli, such as your own vocal volume, excessive pointless talk, Ron Burgundy-style
strong colognes, and unnecessarily bright lighting.
Be Patient and Understanding: Social interactions can be exhausting and stressful for autistic individuals, even if they appear to be enjoying themselves. Many will need “social recovery time,” which can last for hours or days.
Believe them: Many autistic people feel marginalized, not taken seriously, and not believed. They may have a history of being accused of lying, and for some, they may have had to create excuses to protect themselves from certain or possible painful experiences. It is imperative that they are not cornered, blackmailed, extorted, or pressured into situations they are not comfortable with.
Do not create a situation in which they feel trapped, guilty, or ashamed for not going along with others’ expectations.
Invite rather than require. Provide detailed explanations of what to expect with an invitation. Allow time to process the invitation or information. Do not expect immediate answers.
Understand that their social struggles are not intentional, are not fun for them, and these factors should be considered in all things.
Ask, rather than Assume: If you’re unsure about how to best support an autistic person, ask them. Autistic individuals often have a good sense of what works for them, even if they are newly diagnosed. After all, they have been autistic their entire lives. Asking shows that you respect their needs and are willing to understand and better accommodate their needs.
Continued on page 10
Don’t use and abuse: History is full of people, governments, and corporations using autistic individuals to meet their selfish needs for power and financial gain. They have selectively sought out information that confirms their biases and misunderstandings, especially if it can result in a benefit to them.
Today, this systemic abuse is still rampant in schools, medicine, the tech sector, in the arts, and especially in the medical insurance industry. The number of autistic people who are initially told their assessment would be covered, only to later have their insurance company deny their claims, leaving them owing money to medical providers is abusive, in my opinion. This must change.
Follow through on what you offer: On the heels of asking and not assuming, if you are honored with information on how to help them, follow through and help them in the way they suggest if possible. Otherwise, your actions and intentions may be viewed as a hollow offer, void of action, and another disappointment. Show them they can trust you when reasonable.
Promote Inclusivity: Encourage inclusive practices in your community, whether at work, school, or in social settings. Advocate for policies that support neurodiversity, such as flexible working conditions and sensory-friendly spaces.
Stand with them to show support and solidarity, but let them speak for themselves if they want. You do not have to be an expert in autism to stand with them.
Model Acceptance: Your behavior can influence others. By modeling acceptance and understanding, you can help change societal attitudes towards autism. This includes challenging stereotypes and speaking up against discrimination.
NEVER Weaponize Autistic Traits, symptoms, or Features: Have you ever heard the term, “Hugging you with one arm while stabbing you in the back with the other”? In my YouTube video called Autistic Mate Crimes, I discuss the vulnerable position many autistic individuals find themselves in where they are more likely to be taken advantage of by others.
By nature, many autistic individuals are more likely to share their feelings, secrets, and resources with those whom they consider to be friends. This willingness to readily share with others can easily be used against the trusting autistic individual. Never allow another’s vulnerabilities and trust to be used as a weapon against them.
Support Autistic Voices: Listen to and amplify the voices of autistic individuals. Support their advocacy efforts and give them platforms to share their experiences and perspectives.
Understanding and supporting autistic individuals is a journey that requires action, ongoing effort, and commitment. Unfortunately, the concept of “awareness” has all but lost its impact on the hearts and minds of those we must further influence. Action and empathy are what we must now focus on moving forward.
There is a moral and ethical responsibility to understand autistic individuals that does not rest solely on their shoulders. It is not their burden to bear any more than it is the responsibility of those who are in wheelchairs to fund and build their own ramps.
Rather, it is the collective responsibility of autistic individuals to provide accurate information and non-autistic individuals to provide empathy, a thirst for autism education, and action that will benefit everyone.
By accepting this responsibility, we will all enjoy a more inclusive and compassionate world where every individual, regardless of their neurotype, can thrive.
To see an extended version of this article on our website and to read additional wellness and therapy columns by Dr. Service, please visit: www.SpectrumLife.org/neurodivergentdoctor
Check out Dr. Service’s YouTube channel at: www.youtube.com/@NeurodivergentDoctor
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, Luna. www.NeurodivergentDoctor.com
Providing guidance, training & support around disabilities 9414 NE Fourth Plain Rd., Vancouver, WA 98662 360-823-2247 • www.peacenw.org
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Tes T imony
By K A r EN Kr E j C h A
Tes T imony
These are the words I want you to write. It’s not about looks, it’s not about likes. It’s not about pleasing, it’s not about clout. I created you divinely from the inside on out.
What shall you write, what words shall you say? Listen to me. I’ll show you the way. Today is the moment I want you to share. That our todays bring opportunities To show how we care.
Today is your T es T imony built on todays from the past. Built on joy and a foundation of a true love that lasts.
Each one of us has a journey of our own. A testimony, a calling, a way to the throne.
We often don’t know who our testimony will reach. We’re often not meant to meet the ones we shall teach.
Adversity refines you. Your testimony defines you. Those seeds you see behind you. Have been sown for ahead.
On the paths you have taken You’ve never been forsaken. So today child awaken. Get out of bed.
How will you define yourself?
Don’t worry what to say. When it’s time to testify. Pray for Today.
Are you looking to please man Or are you looking for me? When you seek a personal relationship, Your eyes begin to see.
The world says advocate – do more, do less. I say listen, love, and bless. You’re torn between culture of judgment you’ve been shown. When the only judge that matters is the One on the throne.
The world’s labels are like clothing. They’re worn and one day thrown. When you seek me for your label, You’ll wear Child of my own
Listen, seek, and you will find Your calling for Today, not forward or behind. Listen to the Spirit, he’s full of love and is wise. You don’t need to please people, that’s a dangerous disguise.
Faith, patience, mercy, grace.
All of these have a cherished place. You, my child, I’ve loved all along. You’re forgiven, you’re chosen.
Created with a unique worship song.
Time to move forward, time to open your mind. What I have for you ahead is not what’s behind. Today keep on growing. Be curious and seek.
Lean on my strength in the times you are weak.
Your testimony does not have to reach everyone. When you share about you, it points to the One. So plant those seeds And I’ll follow behind. Today is your testimony. Refined child of mine.
Karen Krejcha is a co-founder of Autism Empowerment, where she serves as Executive Director. She is Editor of Spectrum Life Magazine, host of the Autism Empowerment Podcast and founder of Spectrum of Voices LLC. Karen was diagnosed on the autism spectrum in her 40s, after the diagnosis of her two children. She has been married to co-founder John Krejcha for over 31 years and is devoted to being a loving wife, mom, daughter and ambassador of acceptance and empowerment worldwide. https://linktr.ee/karenkrejcha
Curious about the inspiration behind “Testimony”?
Please see our bonus feature at www.spectrumlife.org/blog/testimony
A Day In the Life of Magnus Hedemark Advocate for Authenticity, Personal Growth and Exploration
By Jenny Bristol, Illustrations by Rebecca Burgess
Magnus Hedemark (he/him, they/them) is an eastern U.S.-based tech professional who has grown and expanded both his career and his understanding of himself in big ways over the years. Learning that he was autistic and what that meant for him has helped him make better decisions, open new doors, and create a life that supports his needs.
His openness about being autistic regularly gives him the opportunity for (hopefully) productive conversations about how autistic experiences differ from neurotypical experiences, and Magnus often shares these reflections with those around him.
Magnus lives passionately for his interests, his work, and his family, which consists of his high school sweetheart wife, three kids, four dogs, and a menagerie of other pets. He is multifaceted, giving his attention to many things, including the conventional and mundane and the unusual and unexpected. He has a long history of taking the initiative to learn new skills that will help him orient his life in the direction he wants to go.
What does a typical workday look like for you (or, if there isn’t a typical day, describe one that is representative of your life)? What does a typical weekend day look like?
I live on the east coast and work 100% remotely for a west coast company. So, my mornings are usually the time I have to myself to do more singular-focus work. Also, I’m fortunate that some of the key people I need longer working sessions with are on the east coast. So, the mornings are really the time I have to get things done in a more hands-on kind of way.
Around 11 a.m., my first meetings start. These are usually check-ins with people who report to me, where I’m making sure they are getting the support they need to be successful in the goals they have set. Or they could be check-ins with my business stakeholders to understand how we can have our respective departments work more cohesively together without collision so the whole company kind of moves together.
I do get a lunch break every day. I really insist on that. It’s so important for me, partly to help manage any [sensory] overwhelm conditions that could be building up, partly to just get away from work a little bit and be alone with my thoughts, or even just spend a little time having lunch at home with my wife or one of my daughters.
The afternoons more often have a really brisk pace of back-to-back meetings. I’m careful not to work too late, but since most of my coworkers are on the west coast, it can be a little tricky to ensure I get enough time with everyone before the end of my work day while they still have hours to go in theirs.
I try to make sure everything I need to do is pretty well wrapped up before 5 p.m. I don’t take any meetings after that, but I might spend a little time in solitude wrapping up some loose ends from the day. This is when I’ll usually send some words of gratitude to people who have been doing a good job, letting them know I see how they are showing up and appreciate them.
My nights are usually just for me, to go down a rabbit hole of interests without apology. And I tend to want to stay up too late at night doing that.
During the winter, weekends are more about doing homebody things. Little home improvements or reading a book maybe. Maybe I was a bear in a past life or something because going outside in the winter seems an affront to nature. But once the weather gets milder, I do like getting out on the weekends, riding my motorcycle or doing something with my family.
What hobbies or interests do you have outside of your work?
This is always a hard one to answer to neurotypical folks, because they just want to hear like one, maybe two things, tops. And they really just aren’t ready for it.
I actually feel like I’m too lazy with my hobbies these days, and I am sort of ashamed of myself for it. But then I spend time with a neurotypical coworker and they get some small taste of my personal life and have a bit of a strong reaction most of the time. So, I guess even in my older “slacker” years, my interests might still be a bit intense. I like to say, “My hobbies have hobbies.” It’s kind of crazy how it all takes over.
Suppose you were to step foot in my home office and just take time to try to forensically investigate what I’m into based on the evidence you’d find in there. In that case, you’d see strong supporting evidence around things as far-flung as 3D printing,
Continued on page 18
hand drumming, hydroponic houseplants, experimental aquaculture, books, more books, very old books, videography, photography and podcasting. You’d find a small colony of (live) vampire crabs on my desk, and larger colonies of exotic isopods behind the desk. You’d discover multiple reptiles, electronics projects, home automation experiments, and more. And that’s just one room.
There are some hobbies that I’ve had forever and that never really change. Take technology, for example. I’ve been a tech nerd since before I could read. In fact, I taught myself to read before going to kindergarten just so I could learn how to program a robot that I had access to (totally worth it).
Some things come in and stay very strongly for a while, then go away for a few years, before coming back with a vengeance. Photography is one of those hobbies for me. I go so hard into it, learning techniques and learning different generations of technology like those old-timey 1940s press cameras that used big sheets of film.
Or, I like mashing up old and new, like old lenses on new cameras. Photography is one of the hobbies that I’m on a bit of a break from right now, but I know it’ll come back in some big way when I’m ready for it.
Right now, I’m back hard into motorcycling. I had taken a few years off. This time was different. It wasn’t my lack of interest or anything. It was because I had kids who all kind of wanted me to take some time off from riding so that they wouldn’t have to worry about my safety during their childhood years.
But I did get a motorcycle last year just to get the hang of it again, and within a few months I was trading up to a big, serious long-haul touring motorcycle. And then I disappeared for a couple of weeks riding like 2,500 miles all over the southeastern U.S. in a very Autistic way.
Not in the overly planned way. I mean more like the Autistic wandering way. I had no plan. I just let my curiosity take me places. And it was really, really amazing.
How does being autistic help or hinder your work or hobbies?
I think that being Autistic has often made it really hard to get a fair shake in interviews. And it has DEFINITELY caused some difficult relationships with some of my previous supervisors who just wanted me to be more “normal” or whatever.
Even though my career has come a long way, much farther than I ever thought it would go, it was built on a trail of short-term jobs—jobs where, for whatever reason, it was no longer safe for me to stay.
Finding a good boss is so, so hard. And even once you find them, the reality of the corporate world is that people come and go all the time, they get moved around all the time. So I might get a great boss to start, and then they move me to a terrible one. And rather than suffer it for long, I look for the next great boss. I think I’m at a point now where I can focus more on BEING that great boss for someone else.
Being Autistic has helped me in some key ways, I think. Hyperempathy, for sure. Once I took the time to figure out how to use my Autistic brain to my advantage, I think I learned how to be less of a stubborn pain in the butt and more how to be a patient listener and diplomat. I really never thought I had that in me, but I think I’ve gotten pretty good at it.
The other thing is a sort of holistic pattern thinking, being able to hold a lot of complex moving parts in my head and intuit how pulling a lever on one side will create a result on the other. Applying that kind of thinking to running a business has been a surprisingly useful power-up for every leadership team I’ve been fortunate enough to be a part of.
In terms of my hobbies, I think I’m sort of insatiably curious.
I’m really lucky to live in a part of the world where I have access to explore so many interests. And it’s kind of neat to have the sort of brain that lets me reach a certain level of functional expertise on a reasonable timeline. The downside to that, though, is that when the dopamine hits stop coming so quickly back-to-back, it’s easy to get bored and go looking for the next thing.
But there’s always a next thing!
What kinds of changes or accommodations do you make in your life to allow you to be successful?
I don’t mind saying that I’ve been focusing a lot these last few years on improving my mental health and wellness, and I got very comfortable working with my support team on getting medical help as well.
I think mental health and neurodiversity are hard to talk about apart from one another, because society isn’t very good at developing Autistic adults that aren’t in some way traumatized by life. And that kind of trauma was definitely part of my early development.
So I take meds to help manage depression, anxiety, and PTSD and it creates a sort of biological rhythm for me that I would not otherwise be able to follow. Like... I actually, eventually, go to bed at night and get a full night’s sleep pretty regularly. This never happened before starting meds.
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I actually feel a baseline emotional state of joy and contentedness now, which was never really a realistic expectation my whole life until I reached my upper 40s. So I kind of wish I’d explored this more seriously much earlier in my adult life, and I talk about it in the hopes that it might help another one of us feel okay about asking a professional for some help.
My medications dictate a time of day when I can be productive and a time when it’s just hard to speak, so I build my daily routines around that. My coworkers get my best speaking hours. I try to have my meetings end before the ADHD meds start tapering off, and I’m struggling more with speaking. But that’s a great time for me to focus on my hobbies.
I use technology HEAVILY to bring structure to my day. Calendars, timers, alarms, you name it. And I’m careful with my devices to only allow the kinds of notification that keep my day moving. No social media or email notifications.
Do I still drop the ball a lot? Yes. As I alluded to, I’m also (very much) ADHD, so that creates a different dynamic for me, I think, than someone who’s Autistic and not ADHD might identify with.
Have you experienced discrimination or bullying because of being autistic or your autistic traits?
Yes. Even now. And even by people in the Neurodiversity scene who should know better. My last “big company” job involved a whole painful Human Resources (HR) investigation into my boss for discrimination. I’d been knocked down a point on my performance review, which affected my bonus payout, and all of the areas for growth read like they were right out of the DSM-V diagnostic criteria for Autism and ADHD.
I prepared some materials for HR that showed my review and the DSM-V side by side and it’s almost like one was borrowing heavily from the other. I got my performance review fixed but I was still reporting to someone who discriminated against me, and was even found (to my surprise) violating retribution policies against me after the discrimination findings. Wow.
I didn’t feel safe, I left. I had another experience right after that which I won’t talk about too much except to say I had a relationship with my boss where I could only describe the dynamic as one of outright toxic bullying. And always, always, it comes back to the boss resenting my very Autistic way of approaching my work.
I think where a lot of my neurotypical colleagues are is more of like a “let’s jump right in” approach, whereas I like to study and think and circle round and round a thing... starting it much, much later but then also finishing earlier than the people who started before me. A lot of bosses see that period of thinking and circling as just not doing anything, and sort of cut me off before I have a chance to start.
There’s another dynamic where if I let myself go at full speed, my peers will resent me and undermine me politically. It’s really messed up. So I have to intentionally underperform to my potential to be accepted by competitive peers.
It’s a rare and precious gift when I land somewhere that I can just be 100% myself, going as fast and as intensely as I can, and just feeling supported for it.
What advice would you give to a young or teenage autistic person to help them live their best life, and what advice would you give an autistic adult to help them feel supported in their continuing journey?
Find something you love, that you’re good at, that you can be paid for, that the world needs... build your career around that.
I didn’t come up with that. There is this whole Japanese philosophy of “ikigai” that really helped me make my career work more for me. I wish I’d known that sooner.
The other big thing for me is realizing my coworkers aren’t likely to take much time to understand how my brain works or bend much to accommodate me. So I need to figure out how to live authentically in a society that is made for their success.
I think that really started working for me when I realized one of the downsides of being Autistic FOR ME was a sort of arrogance, thinking I was right all the time just because I spent so much time learning and thinking about everything.
Life got a lot better when I put that aside and started asking people what they think—and then asking them to tell me more about it.
Those ideas aren’t always perfect, aren’t always the best. But I’m almost always better off for having heard them. And, other people become WAY easier to work with when you show real interest in what they think.
So yes, I learned to start putting some of my bigger ideas aside or trimming them down a lot to make room for supporting the ideas of others, or just using the way I think to help them make their ideas stronger. This kind of stuff really helped me to become a happier person, get along with coworkers better, and start being taken seriously for leadership roles.
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 so-called “experts” do you think parents should ignore?
First of all, don’t keep secrets. If you know they are Autistic and they don’t, that’s a problem. They know something is up. Trust me. They know something is different about them. If you have an answer they need, give it to them!
It’s tremendously hard to spend all of our energy trying to be like everyone else. We’re never going to get it quite right. And it just causes all kinds of trauma later.
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The really awesome parents I see aren’t wrapping autism in euphemisms, aren’t treating it like a disorder, aren’t trying to hide it.
They are being that safe haven for their kids to be their neurofabulous selves, still exposing them to the realities of the world they are growing into, and helping them to figure out how to advocate for themselves, be authentic, happy, and successful.
Instead of focusing so much on handshakes and eye contact for interview prep, why not spend time figuring out a great way for them to break the ice and disclose, “Hey, I’m Autistic, so I might struggle a little bit getting my thoughts out of my mouth coherently, but here’s how I think it’ll make me a great addition to your team!”
I wish someone had given me that advice sooner in my career. Once I figured it out for myself, wow, the job search process became so much more fun.
What was a piece of advice you received that helped you be comfortable with who you are?
Actually, this is one of the times I want to give myself some credit.
I had an inward-looking moment and asked myself if I wanted to be the kind of man I was raised to be or the kind of man I was born to be.
I made a conscious decision well into my adulthood to be the latter, and it literally changed the course of my life for the better.
If you could go back in time, what would you tell your younger, undiagnosed self?
You’re not broken. You’re Autistic. And that’s a good thing! Some of your favorite actors, musicians, and authors are Autistic and you can already see that they are something like you, even if they aren’t talking about it.
People around you aren’t mean to you because you are broken. They are mean to you because you are beyond their understanding and that frightens them.
What kinds of activities give you mental or emotional energy? What kinds sap your energy? Where do you lose time and get lost in the activity?
I get a lot of energy in those Aha moments where a big problem is solved. I used to get that more from building things. But I had a moment in my career where I was mentored in how to turn that toward helping people and helping teams.
The difficulty level is greater because people don’t behave deterministically like machines. You kind of have to take the time to get to know people. Then, for improvements to really stick, you have to help people get to know themselves. Given time, they will see the potential in themselves that you saw earlier on.
And once someone is internally motivated, you don’t need to be their “boss” anymore. You can be their support team. So I get a lot of joy now, a lot of energy, out of seeing the people in my sphere of influence reach more of their potential.
I lose a lot of energy from arguments, especially when they are emotionally loaded. I also lose a lot of energy from overwhelming environments, which makes it really hard to have friendships.
I have a guilty pleasure: YouTube. It’s like the new public library. I get lost in there for hours, days, consuming everything on some niche topic. It’s probably saved me thousands of dollars in hobbies I would have picked up and gotten bored of quickly.
But I also like losing time on my motorcycle when I can. Just going off to some distant place, finding a coffee shop, checking out the local roads... Riding a motorcycle does more than modern medicine to get all of my body chemistry in balance, my mood centered in a peaceful place, and it kind of excites me with new sensory experiences mostly under my control.
What is a misconception about autistic people that you would like to dispel? Or, what is one thing that you wish society at large knew about autistic people?
I’ll risk being titillating. I think there’s a misconception that Autistic people are asexual. And a lot of us are. And a lot of us decidedly are not. We can have amazing, full love lives and deep romantic attachments. I’m definitely in that camp.
If I were a classic TV character, I think I’d be Gomez Addams. The train set, the gothy house, the amazing wife that is the center of his universe... that’s the very Autistic me.
I know that one of your passions relates to how autistic people are treated in the workplace. How have you promoted autistic accommodation and inclusion at work, and what strategies have been successful?
Yeah, it’s been a really wild journey and I’ve learned a lot along the way. And I’m going to say some things that are no doubt going to make some people upset. Autistic candor coming...
I’ve used the times that I’ve felt mistreated as an Autistic person to try really hard to work with key players like HR
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and management to get more mindfully inclusive in their practices. And I’ve experienced some real irony.
Sometimes the companies that don’t overly promote their inclusivity are the ones most genuinely willing to figure out how to create a more supportive and inclusive working environment. And sometimes the ones that make the most public noise about how inclusive their cultures are can be the ones decidedly less safe to be an Autistic employee. And the absolutely worst treatment I’ve experienced in the past ten years in terms of [an] anti-Autistic workplace was ironically in a very neurodiversity-focused workplace. Wow!
The DEI [Diversity, Equity, and Inclusion] folks are often the ones out there talking about inclusivity, getting press coverage, etc. But ultimately, they have little to no impact on your experience as an employee. Not for lack of trying. They just aren’t empowered to do anything meaningful in most companies. So they do what they can, which sadly ends up being the superficial stuff that gets the company good press without having to really work for it.
But what has been successful? I think it always comes back to who you report to and who they report to. As soon as you have to involve HR, that can work for you in the short term and against you in the long term—or it can work against you more immediately.
HR is not the court system; they are not there to be impartial. I think that’s something most people don’t understand. The bottom line is that you’re at a job to provide some valuable output to your employer in exchange for money.
As long as the outcomes are valuable and the money is within normal bounds, things are probably going to be okay for you. But when you start becoming a problem for them to solve, they might not want to solve it the way you want them to solve it.
What works for me most of the time is not bringing my needs forward as a problem to solve. More like... an opportunity.
Here’s an example of how I might approach sensory overwhelm at my assigned desk: “Hey, I’m good at what I do, but I get distracted a lot by having my back to the busy walkway. I know I’d be a lot more focused if I had my back facing a wall and I found a free cubicle if you could just approve of this move request?” That’s the kind of conversation I’d have during the times it went better for me.
I’ll say that for all the serious damage COVID-19 wrought upon society, there actually were some good outcomes, I think. The years 2020-2021 kind of proved once and for all that all these companies that said their jobs couldn’t be done remotely were all kind of wrong, weren’t they?
So many of these jobs were being done remotely, and everyone got used to it to the point where the companies
would start saying, “Okay, all clear, come back to the office now.” And what happened? Workers stayed home, mostly.
I think this is a huge gift to the disabled community. It validates something that so many of us have been asking for: how we could be great workers if we could just work from home. And now we can.
And honestly, I just got by in the office. I spent more of my capacity managing sensory overwhelm there than getting anything done. Now that I’m fully remote, I’m way more into my work and way more successful at it.
And that is the long way around to saying that, yes, there is something to the idea that if you’re Autistic and job searching, and you think you might love your work more if you could do it from your own sensory safe space, you’re probably right. And you should chase that outcome for yourself.
How has being open about being autistic opened doors for you in your hobbies and/or in your career?
I disclose early and often. It’s often one of the first things I’ll mention in an interview to break the ice about anything “off” about me the interviewer is picking up by turning it into something fun and dynamic.
I can talk about how my way of seeing the world comes in very handy when everyone else is panicking and thinking everything is out of control, but I see a highly complex level of order to it all. I’m seeing a clear path to reducing that complexity to a point where everyone else can hold it in their headspace and not see it as chaos anymore. That has helped me in my career, and I can draw from some powerful examples now. That’s the kind of thing that now materially helps me in job interviews.
Candidly, early disclosure also helps me to flush out really discriminating shops sometimes. If they fail their autism disclosure response during the interview in some substantial way, then I feel confident that it’s okay for me to explore different opportunities instead.
I think when I was young, like REALLY young, being Autistic did get me taken seriously by computer professionals. There are so many of us in tech, and back then (the 1970s), nobody was really diagnosed. It was just sort of a mutual recognition, hey, this kid is weird like me. And they’d get it.
They’d see I was coming into their space in a more serious kind of way, and actually being helpful, being inclusive. I think if I’d been neurotypical, they would have sniffed me out immediately and brushed me off. That sort of early acceptance in the tech sphere really encouraged me to keep going with it.
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What do you love about photography? What are your preferred subjects, and why?
As I mentioned, photography is one of those things that comes in and out of my life like the tide. Right now, I’m not really actively shooting. But when I am actively shooting, the interests come in waves. I’ll go through a really serious street photography wave where I’m walking up to total strangers on the street, really close, and trying to get a very real photo of them in that space without them feeling any impact of my passing presence in their life.
I’ve gone through phases of doing surreal art photography or macro shots of fine details on old cars and motorcycles. I also had multiple phases where I just got really known locally for nude portraits of people.
The nude photography subject is one that is also titillating but has real direct impact on my life journey as an Autistic person. I never really sought that genre out. It really sincerely did fall into my life unexpectedly through a hilarious misunderstanding. But when the opportunity came, I tried it. The subject liked it. She told her friends who came to me, who told their friends, who came and bought art prints from me... and it kept ballooning.
During the sessions where I was working with the art models, I had the most profoundly unmasked kind of conversations where we were each being very vulnerable to one another and very authentic with one another. The sort of connection that can happen during those shoots is intense and can create lifelong friendships.
I learned during that time that masking is not a behavior exclusive to Autistic people. The neurotypicals are doing it, too, with one another.
It’s almost like we’re all afraid of being ourselves with one another. And all it takes sometimes is to be in a space where we take a chance being completely vulnerable with one another, a space where nobody exploits that vulnerability, and so then it becomes safe to come out very authentically.
That very real phenomenon has become a part of what drives me, ironically, as a leader in a business context. The whole idea that I have a sort of responsibility to create a space where the people I’m leading can be vulnerable with me without fear of that vulnerability being exploited. And if they can be vulnerable, then they will be authentic. And if they are authentic, I’m going to more consistently get the best kind of presence from them when they show up to work.
It’s a really broadly applicable thing. It can work in friendships and in romantic relationships. I’m sort of in awe of it because as an Autistic person, I had to put in work to learn these kinds of fundamental social skills.
Because I put in the work, I think I also don’t take it for granted. I put more value on it. Not just earning it, but protecting it. Being aware that once I’ve earned it, I just have to exploit that vulnerability once to lose credibility forever.
And that’s why I love photography.
Describe your experience trying out new technology. What kinds of thoughts and emotions go through your head? How do you like to push its limits?
I like to break things and then unbreak them. I like to see what the edges of acceptable use look like and how they can bend. I like complex interrelationships between different
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Photos courtesy of Magnus Hedemark
technologies working together. When I can pull that off, I feel like an orchestra conductor. It feels like making music.
Is there anything else you’d like to share?
I’m not special. I don’t have it all figured out. What works for me won’t necessarily work for you. Because we’re not the same, we don’t have the same social privileges or the same history to draw from. The things that work for me today might fail me miserably tomorrow.
I’m incredibly fortunate to have reached the place in my career that I’m at, and I also worked very hard for it over a very long period of time. But the real secret is the hard work was not on my job; the hard work was (and still is) on myself.
I worked on moving from a sort of arrogant know-it-all Autistic archetype to intentionally developing emotional intelligence, conversation and relationship skills. I also intentionally learned how to focus more on collective success. Working on your internal development does more to assure your success than just focusing on individual success likely will.
What are the best ways for people to connect with you?
I’m going to be a bit of a jerkface and ask... please don’t email me. I get overwhelmed easily by it. And I get a lot of email. A lot. And it’s hard to live up to those expectations.
The best way to share orbits together is to follow me on LinkedIn and engage with my occasional posts there. It’s often a raw, vulnerable, and authentic place to talk about these things.
In that open social dynamic, I’m not feeling so much pressure to perform and I can just relax and enjoy as much or as little of the discourse as I’ve got spoons for. Always protect your spoons!
Magnus Hedemark: https://linkedin.com/in/hedemark
This interview is part of an ongoing series, A Day In Our Lives, Actually Autistic Adults in the Real World. To read recent interviews and the original anthology, visit: https://www.spectrumlife.org/adayinourlives
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 experience, not something to be punished. Visit www.JennyBristol.com
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
www. spectrumlife.org
Illustrations by
Rebecca Burgess
#AskingAutistics Do You Hate Grocery Stores? Dealing with the Grocery Store Nemesis
By Lyric Rivera, NeuroDivergent Rebel
Since I was very young, long before discovering my Autistic brain (at 29 during a period of burnout), I have always had strong (negative) feelings about the grocery store.
Looking back, the undiagnosed Autism explained a lot about my life, especially my grocery store blues.
When I didn’t know I was Autistic (as I didn’t know for most of my life), I didn’t understand many things about myself, including my strong aversion to shopping in busy supermarkets.
Learning the truth shed light on why I’d had meltdowns, screaming at my guardian that I never wanted to go to the grocery store again. It also explained why, once I was old enough to do my own grocery shopping, I would shop late at night (when the stores were nearly empty).
When I was in high school and for years afterward, many grocery stores in Texas were still open 24 hours a day, or at least open until 1 a.m. or 2 a.m. most days.
Without understanding why I was drawn to shopping late at night or early in the morning, I gravitated towards shopping at the most sensory-friendly times of the day.
My Autistic instincts were good at protecting me, even when I was completely unaware of what they protected me from.
In 2020, when COVID hit the U.S., many grocery stores started closing overnights during the slower (sensory-friendly) hours so that they could do cleaning and disinfecting between shifts.
Unfortunately, years later, though deep cleanings are no longer happening in many locations, most retailers have kept their COVID hours because they realized they weren’t losing money (many were saving money) by reducing their service hours.
I’ve given up hope the stores will re-open for my favorite shopping shift. To compensate, my Autistic partner and I rush in and out of smaller stores twice a month when we move campsites. If we do a good job getting in and out fast enough, we will avoid sensory overload from the trip.
We are a team. On bad days, if one of us isn’t up to shopping, one may venture into the store to grab the necessities, allowing the other to stay outside in our RV.
I tend to struggle more with sensory things than my partner does.
Now that I know I am Autistic, I will use tools (such as sunglasses, earplugs, headphones, or noise-canceling headphones) for longer store trips or if I’m tired or worn down (since not being my best can make my sensory system more sensitive).
Something else we both struggle with, for different reasons, is when the store doesn’t have an item we’re used to.
My difficulty is making a new choice when there are multiple options, and I need to learn more about the new products before deciding.
My partner struggles when products change because they are susceptible to food taste and texture, so picking new foods may mean selecting a food that’s unsafe for them.
We’re both Autistic but have VERY different experiences and struggles with grocery stores (because every single Autistic Person) is an individual.
I always find it fascinating to learn from the varied experiences of other Autistic People (it’s why I LOVE writing this column where I get to feature the voices of my Autistic Community members).
So... what DO they have to say?
Today’s question (and reader answers) come to you from the NeuroDivergent Rebel Facebook page:
The grocery store is one of my biggest nemeses.
#ActuallyAutistic #AskingAutistics - Do you hate the grocery store? If so why?
Responses from #ActuallyAutistic contributors:
(Editor’s note: Out of respect to Lyric and their #ActuallyAutistic contributors, responses have mostly been shared as submitted and are a sampling of many responses. To see more posts, visit: https://www.facebook.com/NeurodivergentRebel)
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It’s too bright, too loud, and too peopley. – Anonymous
I’m lately loving the pickup option. I also noticed I saved more money this way, as I not only stick to buy what I need while shopping but my store has online coupons and it tells me which product is on sale or in a bogo and applies digital coupons for it. I saved $45.00 like this yesterday and my mind was blown because I can never get to save more than $4.00 when I go in person. – Liza Cardona, PsyD
It used to be, definitely. I couldn’t even buy perishables on the same day as other stuff, because if the line was too long, I’d freak out calculating “how much not good” that dairy was going to be...ugh. So so so many grocery store issues. Plus so peopley. My wife is a magician of some kind tho. She calms me tf down in many ways, including most of my grocery store issues. These days, I can go with her, and 80% of the time I’m good. 20% I’ll still have some kind of hard time. But it was 100% bad before this woman was a part of my life. I’m lucky. #coregulation –Erika Sanborne, http://autisticphd.com
I actually enjoy grocery shopping. I have my little routine down lol. However if they change it up... I get cranky lol. Plus it’s my time away from kids for an hour. – Auti-HD Ummi, Facebook: AutiHDummi
A lot of it depends on how busy it is, how loud it is, and how many people try to run me over. – Thomas
Shuster
I am okay at the grocery store. Actually, what gives me the most problems is returning to the house with plenty of groceries, because my executive dysfunction makes putting so many things in their place at once super challenging. So, I would rather make more frequent trips to the store for fewer things. I go in, get what I need, and get out fairly quickly. – Jimbaux
I printed out a map & directory of my local grocery store... then I print out my grocery list by aisle... get in, get out, be home. Though I do prefer to order online and get it delivered to my car... – Kristi Peterson
Yes it’s overwhelming especially when crowded or buying something I’m not familiar with and there are fifty choices. – Lynnette Marie
Instacart is a total lifesaver for me! I feel incredibly privileged that I can afford it, but it’s worth the expense for the stress (and spoons) that it saves me. – Melissa M
Only when it’s overcrowded and too loud. But I am usually wearing headphones listening to music, so it’s not too bad.
– Tanya Muzzio
I try to get in and out as fast as possible. I’ve gotten good at just knowing what I need and zooming down the aisles. – Cassandra Ross
I get overwhelmed by all the options. I’m a horrible decision-maker.
– Alexandria Gartman
All stores are bad, but they are the worst. I feel trapped in the aisles, I can hear conversations from too far away (and cis men are rude af and loud about it), I want to read all the labels but the floors hurt me, the lights are loud and bright, but the worst is the checkout line where you are forced into what feels like a cattle chute and you have to make small talk with the cashier... I can’t go alone. I can do small trips with my boyfriend. When I had a service dog I could go alone. Even for big trips. – Nat
To join in the conversation, here is the link to the original Facebook post: https://bit.ly/aagrocerystores
This article is part of a continuing regular series at Autism Empowerment and Spectrum Life Magazine called #AskingAutistics by Lyric Rivera. To read past articles and get connected with autistic community members, visit www.spectrumlife.org/askingautistics.
Lyric Rivera 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
Photo courtesy of Adventure Ready NW
Adventure Ready NW Adaptive Recreation: Empowering Lives that Thrive
By John Krejcha
Summer, Fall, Winter, or Spring, the Pacific Northwest is an amazing place to explore out on the trails and waterways. With so much choice, it is sometimes hard to know where and how to begin.
Although some people already like the idea of being outdoors in nature, many of us could use a little encouragement to step outside of our comfort zones to try new adventures. Having a compassionate, experienced and skilled guide to empower us, while providing fun and memorable opportunities allows us to safely try things we may not have previously thought possible.
Recently, we caught up with Cora Templeton, Founder, Director, and owner of Adventure Ready NW (ARNW), to explore how their organization supports neurodivergent high school and post-high school students and students of all abilities in finding community through a variety of recreational and fitness opportunities and adventures.
Hi Cora, please tell us a little bit about yourself.
I bring a background in guiding, special education, and wilderness medicine to Adventure Ready NW. My husband, Aaron, has worked in communications and marketing for most of his career and is also a wilderness skills instructor and Search and Rescue (SAR) volunteer. We’re married, live in Damascus, Oregon, and enjoy camping, fishing, biking, and spending time taking our dog, River, on adventures.
What is the genesis story behind Adventure Ready NW’s founding?
Working as a guide for more than 20 years, I fell in love with helping people experience and access moments and places they wouldn’t otherwise on their own. I pieced together other jobs throughout the years that allowed me to guide during peak seasons.
I came across an opportunity to be a Personal Support Worker (PSW) and later worked with students at Victory Academy in fitness and experiential education. I experienced their joy and saw just how rewarding and impactful working with individuals of all abilities was when I incorporated my guiding and backcountry experiences.
I started to have more ideas beyond the boundaries of the school, and when COVID hit, it gave me the time to ask myself if that was where I wanted to stay or if I wanted to go out on my own.
Since then, Adventure Ready NW has grown to offer more programs and camps and to serve more students each year. Aaron came alongside me in our pursuit when he went part-time at his day job last summer (2023).
What caused you to found Adventure Ready NW with a focus on “for all abilities”?
It’s so important for me that it says ‘for all abilities’ because everyone needs to know that they are capable of really great things. I have such a passion to draw this out of people because it lights them up and shows them life is more than what they thought possible and that is what excites me about what I get to do.
Life changes you when you decide to not just accept your comfort zone as reality for your life. Life — a FULL and meaningful life — is available for all of us and is found outside our comfort zone.
We all need organizations and people who recognize that and choose to walk, ride, stand, swim, climb, and hike next to people and encourage them to do more than they thought possible.
Yes, there are challenges. Yes, there are things we’re going to have to work through, but so often, society can just put people with limitations off to the side, and they can end up believing they can’t do difficult things they’ve never done before.
In my own way, I’ve lived a journey where limitations have been put on me, with an understanding of what it feels like to live within them. When I was 12, I was diagnosed with hip dysplasia, and the doctors told me I would never lead an active life, that I would need a desk job. My parents didn’t tell me that part for a long time.
I’ve had health and learning issues most of my life, but I’ve always had to push myself to do what I want to do. The doctors told me when I turned 40, my hips would need to be replaced. I turned 40 last year and it became very challenging to do daily tasks. Last fall, it became obvious I’d need to do this sooner rather than later, and I had my right hip replaced earlier this year.
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Everyone talks about how life-changing this procedure is, but I was not prepared for how hard the recovery would be on the other side. I’ve had to encourage myself often with the words I use with my students during my recovery. I feel we as a society can sell people so short on living life because of challenges or limitations, but these words are so powerful!
Your motto is “Empowering Lives that Thrive”. What does this mean to you and how does it play out in the work that you do?
It means believing that everyone is incredibly capable of doing hard things. It means that I will walk beside, encourage, speak life to these guys and gals... and just watch what happens!
I think we all know when we sit in apathy, where our comfort zone is all around us. But when we talk about life to the full, we could all reflect and ask ourselves, ‘Are we really fully living and alive today?’ It’s that deep inhale and fulfilling exhale of life that I strive for others to experience.
I have a story that shows this. Last summer during our Mt. Hood Adventure Camp, after our High and Low Rope Challenge Course day, we had finished setting up tents and camp and we were just having some chill time. I looked over and three guys were dancing in a circle, hugging and laughing together.
All three guys have different levels of communication but they had just shared an experience where they were pushed and they had to dig down deep and complete some difficult challenges. It was a joy-filled celebration.
It was here in a field in the middle of Central Oregon that I saw a community of people who at that moment were truly happy. There was no technology, nor was that moment facilitated in any way. Rather it was an overflow of LIFE, an overflow of JOY. To me, that is what it means to empower a life...lives that THRIVE.
What are the core values of Adventure Ready NW and how did you come up with these? And what are the goals of your program?
We have six core values: Dignity of Risk, Safety, Pursuit of Independence, Fun, Community, and Self-Determination. These essential core values drive everything we do.
• Dignity of Risk: To me, this means everyone has the right to risk and the right to try and whether that leads to success or failure, we get back up and keep trying. So often we are all timid to try new things. Everyone deserves the right to risk and the right to try, and we’re going to do everything we can to support them on that journey. This core value influences everything we do.
• Safety: Everything we do has risk management involved. How are we going to do it safely? What guide company do we use to make this as safe as possible so we can allow people to risk? Taking risks and thorough risk management go hand in hand.
• The Pursuit of Independence: At Adventure Ready NW, we’re not going to do things for students that students can
do for themselves. So often, we want to protect people from failure, but failure is how we all grow.
I’m not going to step in and do things for them, but I am going to encourage them and say, ‘Dude, you got this; keep trying!’ I’m not going to fix the situation for them until that needs to happen.
• Fun: We want to create a super fun and engaging environment where students sit back and inhale and feel like their tank has been filled.
• Community: We want to create community that feels full and life-giving, not only for students but also for families. We hold family events and community events for students and aim to connect families with other families so that nobody is alone in what they’re going through.
• Self-Determination: Self-determination is creating a supportive environment of empowerment and ‘Hey, I got this!’
Whether we’re grabbing coolers, putting up tents, or whatever, everyone can participate and be involved in all parts of an adventure. It’s the ability to give someone a task and have them say ‘I got this!’
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Who is your program designed for?
Adventure Ready NW programming is designed for anyone who experiences any sort of limitation and wants to figure out a way around it. We mainly work with high school age students 16 and over who desire independence and an active, full life after high school.
Many students experience the “service cliff” after high school and our programs are designed to continue to build self-determination and independence as programs and supports for them drop off.
While we currently work with a lot of students who are neurodivergent, we know there are many people with limitations such as Obsessive Compulsive Disorder, anxiety, Down syndrome, and other physical or mental limitations. Many of us experience limitations of some sort and we want to help you figure out a way around that and give you a community to do that with.
What kind of outings and camps do you currently offer?
Our year is structured in segments. We offer 8-week term programming (Fall, Winter & Spring) where we work on the foundations and skill development, and we offer day and overnight camps where we have fun adventuring together and put those skills into practice.
• Term Programming: We offer Fall, Winter, and Spring term programming to acquire skills such as biking, climbing, and swimming. These Recreation programs build the foundations and are where we work on the skills. We also offer community clubs: a running club and a climbing club. These are fun, fitness-oriented groups.
• Winter Special Events and Camps: Each winter, we run a Winter Adventure Camp on Mount Hood where we snowshoe, sled, have campfires, make art, play games, and eat together. We also offer day camps where we snowshoe, cross-country ski, and go downhill skiing.
• Summer Special Events and Camps: In the summer, we’re outside all the time! We’re camping, hiking, biking, rafting on the Deschutes, climbing at Smith Rock, and more! We’re just out there having fun and living it!
• Spring Break Bike Camp: We run a multi-day bike camp where we stay in cabins and ride the Banks-Vernonia path and trails in that area.
• Community Events: These are new this year. We host community events once a month where we do things like bowling, watch movies, play putt-putt, go to museums, and more. These are programs where we’re just having fun, eating meals, playing games, and living life together in community.
• Family Events: We offer family hikes throughout the year. This is a time for families to experience life together and for students to show their families what they’re capable of.
We do a family snowshoe in the winter. This summer, we’re hosting our first Family Summer Camp at Tumalo State Park. For those who sign up, it’s just grab a tent or we have some bunk lodging for families to join us for the weekend to play outside.
What are some of your favorite past outings and special events?
I think that some of our multi-day, backcountry outings have been my favorite. Last year we did a 4-day backpacking trip around Mount Adams and we had this moment where we were just sitting around camp sharing our life stories, dreams and desires. This wasn’t just our students, but parents, PSWs, uncles, and moms.
The year before, we did a lower river Deschutes trip from Maupin to the mouth of the Columbia. There’s this cool stream system where we had a chance to walk up and float down it. I asked the campers if they wanted to do it, and they were just stoked! And it wasn’t just them; it was the guides, the volunteers, and all the campers. At that moment, there were no limitations or differences; we were all just having fun together.
Last winter during our Adventure Camp, one of the nights we played charades, and everyone participated despite different levels of communication abilities. We all had such a great time and we were laughing so hard! That was really cool.
Please share a story or two about individuals and families you have helped and the growth you’ve seen in young adults who are on the autism spectrum.
I recently had a student share with me one of their college papers about learning to ride a bike in our Glide To Ride program and just how encouraged she was now that she could finally ride a bike on her own without training wheels. It was so neat to hear this in her own words, because this is why we do what we do, to build and encourage our students in and out of our programs.
During one of our recent trips, we had a student whose parent couldn’t attend with them, so after we discussed this, they invited the student’s uncle to come up from California and go on the trip. This uncle was really invested in his life, but they had not had a lot of one-on-one time to spend quality time together. During these three nights, he got to see his nephew fully in his environment and community. It was really cool to be an observer of that.
What are your goals for the future for Adventure Ready NW?
We love to work with high school age and those transitioning into post-high school life, as these are the individuals most affected by the service cliff. We have dreams to run even more camps for more students. We desire to grow our community offerings and family events to help create more community. We’d love to run camps and programs for other schools and organizations that serve individuals with adaptive needs.
We’re also working to convert some of our most successful programs — our Glide To Ride bike program and our Water Safety/Swimming programs, for example — into a widely
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Photos courtesy of Adventure Ready NW
available digital platform so that others who don’t live in the Pacific Northwest can take advantage of the successes we’ve seen and be empowered to “Do Hard Things” regardless of geographic location.
We also dream of owning our own rural camp to be able to offer more camps and programs and serve more individuals and organizations.
How many people on average participate in each outing or event?
It varies based on what sort of activity, camp or program, but typical group sizes are between 4 - 12 participants. By keeping our groups small, we are uniquely set up to help modify or adapt activities to the individual support needs of all our students.
What kind of staffing support do you provide?
In some front-country groups and programs, it’s just me and the students. Aaron joins us when he’s able to or I’ll bring additional support staff and volunteers. I often bring in guides that I used to work with and family or friends who are Emergency Medical Services (EMS) professionals to ensure that we’re managing risk.
All the volunteers that help also have that mentality of how are we going to live outside of our comfort zones. We make sure that we adequately staff to ensure safety for everyone and that we have the team in place for successful, fun adventures.
What are the costs for participation?
Costs are per program for each term, special event, and camp. Pricing varies and we do have some scholarship opportunities available. We don’t ever want costs to be a barrier and some programs are more accessible when it comes to costs than others.
Because our programs often include some sort of adventure elements, there can be additional costs, but we’re definitely not doing this to get rich. We aim to cover costs and create a really high level of service and experience. We want to keep our group sizes small enough that we can provide that high level of service and encouragement that we stand behind.
What is the process for registering?
All registration is handled through our website for term programs, camps, and special events. Waivers are filled out when a student begins participating in our programs and again annually so that we are aware of changing medications or other student needs.
I encourage people to look at our website for more including photos, videos, programming examples, and social media links.
What is the best way for somebody to connect with Adventure Ready NW?
Our website is a great hub for everything.
Website: www.adventurereadynw.com
Email: cora@adventurereadynw.com
Phone: (503) 770-0086
Instagram: @adventureready_nw
Facebook: www.facebook.com/adventurereadynw
I’m always happy to set up an exploratory call or to meet with families and students before or after one of our programs to meet them and discuss where the best fit with our programming would be.
What else is important (or would you like) for Spectrum Life Magazine readers to know?
You might be reading this and thinking that this would be cool for my kid or for me and definitely, yes, join us! But it’s also a really important mindset for all of us to have, that life is lived outside of our comfort zones and in our challenge zones.
If there’s one thing I’m gonna go to my grave saying, it’s that life is meant to be fully lived no matter what we face, so go out and live it!
John “Rugged ‘N Ready” Krejcha is co-founder of Autism Empowerment and serves as Program Director. He serves on the Editorial Advisory Board of Spectrum Life Magazine and is co-host of 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 autistic, he is a neurodivergent, dyslexic and a loving ally.
Vancouver on Film:
Vancouver WA film celebrates Neurodivergence, Craft Beer, and Community
By Karen Krejcha
Brian Tashima, a long-time board member of Autism Empowerment, is widely recognized for his Joel Suzuki series of sci-fi fantasy fiction books featuring autistic characters. He is also the lead singer and creative force behind the band and multimedia production team Second Player Score.
Now, he is venturing into the world of filmmaking with his now-in-production project, Hold My Beer. This short film, envisioned as the pilot episode of a potential series, showcases not only his storytelling prowess but also his commitment to neurodivergent representation on film and behind the scenes. Hold My Beer is set in Vancouver, Washington, and weaves together themes of personal growth, community, and the vibrant local craft beer culture.
In this exclusive interview, Brian discusses the motivation behind the film, the unique storyline, and how he has integrated members of the local autism community into the project.
With a combination of humor and heartfelt moments, Hold My Beer promises to resonate with a wide audience. This film is more than just a creative endeavor; it’s a celebration of neurodiversity and the rich culture of Vancouver. Join us as we delve into Brian’s journey from author to filmmaker and learn about the passion driving this exciting new film.
Hi Brian, Thanks for being willing to talk about your upcoming film, Hold My Beer.
People may know you as the author of the Joel Suzuki book series. This is a big departure! Tell us a little about Hold My Beer and the motivation behind the project.
Hold My Beer is a short film that is intended to be the pilot episode of a series. Back in 2018, as I was working on the fourth and fifth volumes of Joel Suzuki, I developed an interest in screenwriting, partially out of a desire to write a movie adaptation of the first Joel Suzuki book. That interest quickly turned into an obsession that led to a bunch of scripts, including a trilogy of films based on my band’s second album, a baseball-themed romantic comedy, and what eventually turned into Hold My Beer
How and when did you come up with the concept?
During my screenwriting binge, I came up with an idea for a story set in my current hometown of Vancouver, Washington about a middle-aged man who, after he gets laid off from his job and his wife leaves him, turns to an old hobby—homebrewing— to distract himself from his troubles. Shortly after, he realizes that this hobby might lead to a new, second career.
The homebrewing concept was an easy choice not only due to my familiarity with it—I’m not a homebrewer myself, but the drummer in my band is—but also because beer is a big part of our culture here in Vancouver. Back in the ‘50s, this town used to be the home of the legendary Lucky Lager, and today we have multiple successful, independent brewpubs spread throughout the area. In fact, one of those brewpubs was started by a couple of guys that I used to work with. So that’s where a lot of the inspiration for the story came from.
After I finished writing the script, I went on a search for a director who would be willing to take on the project. The search was postponed by the pandemic but resumed in 2022 after my band performed at a local beer festival and I was reminded of how much the craft beer scene means to this community.
Tell us a little bit about the storyline and genre.
After the rewrite, the film is now a coming-of-age story about an autistic young adult who, after receiving a tough-love ultimatum from his parents, discovers an interest in homebrewing and decides that his life’s goal is to open his own brewpub. It’s a comedy-drama along the lines of shows like Atypical and Everything’s Gonna Be Okay, and while it retains themes from the original script like confidence, family, and finding one’s purpose in life, once I realized there was an opportunity to incorporate an autistic lead character into the script, it made a lot of sense to make that change. In fact, I kind of wondered why I didn’t think of it in the first place. It was a total “light bulb” moment.
How are you funding the filming? Who are you partnering with on the film?
A lot of our funding has been provided by a grant from the Vancouver Culture, Arts, and Heritage Commission, a program of the city whose purpose is to help develop a thriving artistic scene here locally. I’m producing the film with my bandmates and production team partners Kyle Gilbert and Daniel Downs, who are also serving as crew members. Also, Autism Empowerment is a coproducer and is providing funds to pay neurodivergent people who are working on the project.
How are you incorporating people from our local autism community within the film?
Part of the purpose of the film was always to be a showcase of Vancouver and our arts, music and craft beer communities while using as much local talent as possible. After the autism angle was added, it became immediately obvious that we needed to also incorporate neurodivergent individuals into the cast and crew.
Fortunately, thanks to my previous work with the autism community, I was able to draw on that association and find people to join the project in a variety of capacities, including actors (four of our speaking roles, including the lead), on-set crew (Production Assistant, 2nd Assistant Camera), and other behind-the-scenes positions (makeup, website construction, graphic design). In addition, I’m working with my son, who is autistic and was the inspiration behind the Joel Suzuki series, on developing a tie-in video game related to the film. I’m grateful that, thanks to Autism Empowerment, we have a budget to pay these talented folks for their work, because they are truly deserving.
Tell us about the casting process and how you ensured diverse representation.
This eventually led to some serendipitous meetings (including one with Emmy-winning, Vancouver-based director Beth Harrington) that, while not resulting in a director (I ended up becoming the director, which is another story), led to a rewrite of the script that turned it into what it is today.
When I rewrote the script to feature an autistic lead, I made sure at the same time to leave room for diversity in the casting. Specifically, there are four young adult roles that I wrote to be of any gender and ethnic background.
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Photos courtesy of John Krejcha and Second Player Score
From there, I basically reached out to everyone I knew who had some connection to the local autism and/or acting communities. It was a pretty lengthy process, but in the end, we ended up with an amazing cast! The four young adult roles were filled by people with prior professional acting experience: Andrew York, Ian Engelsman, Ethan Blackwelder, and Lydia Pentz. Several other speaking roles went to folks who also had acted before: Rich Ray, Kevin Coy, Karen Krejcha, and Molly Downs. And finally, as a special bonus, we even managed to cast the mayor of Vancouver, Anne McEnernyOgle, and Vancouver’s city manager, Eric Holmes! I thought that was a nice touch, kind of like how Portlandia featured the mayor of Portland as the fictional mayor’s assistant.
What kind of messaging do you want to project out into the general community about autism or neurodivergence?
That people who identify as autistic and/or neurodivergent are simply that—just people, like everyone else, with the same kinds of hopes and dreams. It’s similar to the message that I tried to convey in my novel series. The script makes it clear that our protagonist is autistic by mentioning it in one line, but after that, it isn’t referred to again, because it isn’t necessary. This message is also conveyed through our casting, as we have neurodivergent people playing both neurodivergent and neurotypical parts.
What messaging do you want to share about Vancouver, Washington?
That we have our own unique and vibrant creative culture! I think this town has had sort of an underdog mentality, being considered the “other” Vancouver (besides the one in Canada) and/or a suburb of Portland, Oregon, but my hope is that this film can help turn that perception around.
I should also mention that the songs in the film’s soundtrack are all by local rock bands.
How is the filming going so far? Where are some of the places you will be filming?
Thanks to the efforts of our amazing cast and crew, filming is going great! All our location shoots are at Vancouverbased establishments, like Seize the Bagel, Loowit Brewing Company, Bader Beer & Wine Supply, and the Pearson Air Museum’s Historic Hangar.
When is the film going to be ready?
One of the terms of the grant we received from the city is that the project be finished by the end of 2024, so that’s what we’re aiming for.
How will you be promoting the film once it is finished? Will there be local screenings?
We’re planning on holding a screening at Kiggins Theatre in downtown Vancouver that will be free and open to the public. After that, we’ll make the film available on YouTube and promote it via press releases, ads, and word of mouth. I’m also currently looking into hiring a publicist with experience promoting independent film projects.
What are your ultimate goals for the film?
We want to get as many eyeballs on it as possible so that it creates what I call “TV tourism,” where people who see the film then become interested in visiting Vancouver and checking out what we have to offer. Kind of like Forks, Washington in Twilight, or the “Goonies House” in Astoria, Oregon. And then hopefully we can shop it around to studios as the ongoing series it was meant to be.
Would you be willing to have a follow-up article once the film is complete?
Most definitely!
What else is important for Spectrum Life Magazine readers to know?
If you want to see behind-the-scenes updates of the film’s production as it progresses, you can follow Second Player Score (my band/multimedia production team) on Facebook at facebook.com/secondplayerscore, or my personal blog at briantashima.blogspot.com
The film will also eventually have its own website at holdmybeer.mov
“Sudsy” Karen Krejcha is a co-founder of Autism Empowerment, where she serves as Executive Director. She is Editor of Spectrum Life Magazine, host of the Autism Empowerment Podcast and founder of Spectrum of Voices LLC. Karen was diagnosed on the autism spectrum in her 40s, after the diagnosis of her two children. She has been married to co-founder John Krejcha for over 31 years and is devoted to being a loving wife, mom, daughter and ambassador of acceptance and empowerment worldwide. https://linktr.ee/karenkrejcha
KNOWLEDGE TO EMpOWER FAMILIES AND INDIVIDUALS
Mainstreaming and Inclusion Explained Clarifying
Misunderstood
Concepts in Schools
By Diane Wiscarson
If you have a child with an Individualized Education Program (IEP), you have probably been to many IEP meetings where a lot of people talk about your child and their education. Sometimes they use terms or acronyms you do not know, which can be really frustrating. It can limit your ability to understand, participate, and advocate for your child.
Consider mainstreaming and inclusion – two very different words, with completely different meanings, and often used interchangeably and incorrectly.
Mainstreaming versus Inclusion
“Mainstreaming” means taking a student from a special education environment into a general education location, and is usually talked about when a student spends most or all of the school day in a special education setting. Mainstreaming describes the physical location of the student.
Mainstreaming’s goal is for students to spend more time with general education peers while engaging in general education activities.
Inclusion is more complex and means actually “including” the student. Inclusion is not just being in the same room as general education peers. The key is making adjustments and changing things around so they are accessible to the student.
This could be modifying the curriculum to the student’s level, giving the student extra breaks, having the student sit at the front of the classroom so they can see or hear better, or providing a one-on-one aide, often called a 1:1 aide or a paraprofessional.
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One problem with 1:1 aides, though, is that they are in very short supply across the Pacific Northwest and the entire country. School districts have had positions posted almost continuously, especially since the pandemic, and few apply for the jobs.
This causes a concern if there is a 1:1 aide on a student’s IEP, and the school district cannot hire someone to fill the job. Unfortunately, other than documenting the deficit, there is not much parents can do except to keep asking and documenting the need for an aide and the efforts the district is making to try to locate one.
When a student is mainstreamed, inclusion is often overlooked but must always be implemented. It is not enough to put a student in the corner, ignore them, and then claim mainstreaming has occurred. In this type of situation, the student would not get much benefit from just being in the general education classroom. Steps need to be taken so the student can participate, learn, and interact with other students.
The goal is to include and keep special education students in the general education environment as much as possible by providing necessary supports for the individual student, rather than segregation into isolated special education settings.
Mainstreaming and Least Restrictive Environment
Special education law requires each student to be educated in the Least Restrictive Environment (LRE) in which they can be successful. In other words, students must be in the general education environment as much as possible. Mainstreaming in general education includes academic and elective classes, lunch, recess, passing time, assemblies, and any other activity students participate in during school hours.
Each student should be in general education at all times, unless there is an individual and specific reason why not. Districts must consider all supplemental aids and services that could be used to support a student in general education. It is only when a student cannot be successful in general education, even with supplementary aids and services, that a student should be removed from general education.
“Placement” on the IEP
The placement stated on a student’s IEP is critical and must be in the LRE possible for the student. Placement describes where the student’s IEP will be implemented. This might include the general education classroom, a resource room, a special classroom, or a percentage of time in multiple settings.
Whether a student can be mainstreamed, and how much, is made on a case-by-case basis, taking into account each child’s individual educational needs, unique circumstances, and their IEP. The placement should be individually designed for the specific student in question, including the classroom location, type of instruction, and various aids and services necessary for success.
Placement decisions are made by a group of people, including the parents, who are knowledgeable about the student and placement options. The placement decision is usually made by the IEP team.
The placement team must always first consider placement in a general education classroom. If removal for specially designed instruction, supports, or other services is required, it must be done in a mindful way. Pull-outs during electives or other carefully selected times can help limit the impact of the removal on the student.
LRE is not limited to the classroom. It applies to all school settings, including the lunchroom, playground, and transportation.
Transportation includes to and from school, travel in and around school buildings, and specialized equipment that may be needed. It can also apply to nonacademic and extracurricular activities and services, as well as transition placements.
The IEP team must consider how the individual student can be included in all of these settings, and in the least restrictive way possible. All supports and services should be detailed in the IEP.
Can the District Force Your Child Into a Separate Classroom?
The LRE obligation does not override a district’s requirement to educate every child. Districts are required to provide each student a Free Appropriate Public Education (FAPE). Whether a student is in a special education classroom or general education classroom, or a combination, the student should
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also be learning and progressing. If a student is unable to receive educational benefit from being in a general education classroom, even with appropriate supplemental aids and services, districts must consider a more restrictive placement.
The educational benefits available in a regular classroom should be compared to those available to the student in a special education classroom. While academic progress is important, a child should not be placed in a special classroom based only on academics. The IEP team must consider both academic and non-academic benefits. Non-academic benefits include, among other things, interactions with general education peers, learning how to work with others, and other social and communication skills.
A child cannot be removed from a general education classroom because it is easier for the district.
While it may require additional resources and cost more, a district cannot refuse to mainstream or keep a student in a special education classroom due to a lack of supports. If supplemental aids and services are on a student’s IEP, the district must provide them.
If the IEP team decides to remove a student from the general education classroom for any amount of time, the IEP team should document specific reasons for that removal. The IEP team should discuss and document the various supplemental aids and services that were considered and why they did not work for the student, if tried.
Districts are allowed to consider the negative effects that mainstreaming a child may have on other students in the classroom. If a student’s behavior is so disruptive that it interferes with teaching or learning, the student could be removed. A student who refuses to work—or is screaming, throwing things, or hitting people—will likely be removed from the classroom at least temporarily.
At the same time, almost all children have some behaviors at school. Students without disabilities also hit, bite, yell, swear, or refuse to work sometimes. Not every action of a special education student should be attributed to a disability, and a district should not automatically conclude that the child needs to be removed from the classroom.
Mainstreaming is not appropriate for every student, but must be considered. If mainstreaming would not result in any educational benefit for a student, the district is obligated to look at other options. A student’s need for additional support in a more restrictive setting may outweigh the benefit of inclusion in the general education classroom.
In the end, if the district determines that a student needs to be in a specialized classroom and the parents do not agree, the parents have only limited options. The idea behind special education law is that the district and the parents are supposed to try really hard to come to a consensus. If no consensus is reached, then under the law, the district makes the final determination.
If the district makes a specialized placement decision and the parents do not agree, they can file a due process hearing request. This is a long, often expensive, and arduous process.
However, while waiting for the due process hearing to occur, the student gets to “stay put” in the current placement until the judge decides. This entire process can often stretch out to a year or so, so it does protect the student from being moved to a different classroom until a judge can decide.
Working Toward Mainstreaming and Inclusion
Because districts are required to provide a range of alternative options, inclusion is not an all-or-nothing prospect. Mainstreaming and inclusion can be done on a trial basis. If the IEP team is unsure how a student will do with mainstreaming, they can try one class or maybe recess to begin.
Start with a class the student is already successful at or a preferred topic or activity. For a student really interested in and motivated by science, start by mainstreaming in a general education science class with appropriate supports. Determine how the class environment or coursework can be adjusted for the inclusion of the student.
Any decision to change a student’s placement should be based on individual needs, which includes looking at a wide range of potential supports to help the student be successful.
Every child and every situation is different. The most important thing is to figure out what each child needs and the supports required to meet those needs. It is ideal when parents are completely involved in this process and ask questions to understand what is happening at school and how to advocate for their child.
Mainstreaming should always incorporate inclusion. When mainstreaming is to be done, inclusion must be implemented. Parents can keep districts accountable by insisting that any plan to mainstream include strategies to make the general education environment accessible to their child.
Wiscarson is an attorney at Wiscarson Law, the only firm in Oregon with a primary emphasis on special education law for families. Since its founding in 2001, Wiscarson Law has shepherded thousands of Oregon and Washington families through the region’s public schools and education service districts on behalf of their children with special educational needs. www.WiscarsonLaw.com
Diane
From Classroom Struggles to Homeschool Triumph Insight from a Nonspeaking Stu dent
By Niko Boskovic
A long time ago, my life looked pretty different, and I felt different too. I was a first grader in a Montessori school, having had a miserable kindergarten experience with a teacher who disliked me and resented having a student like me in her classroom. She mainly preferred to let my paraeducator deal with me and my “behaviors,” which had everything to do with all the sensory stimulation I was receiving in that hectic space.
So when I was switched to a different school structure, there was hope that I would find its looser teaching style appealing. Yet the chaos continued to a lesser degree, and the expectation of conformity was still there. There was a willingness from the teacher to learn how to support me better, but this time, resistance came from the special education team.
The focus shifted from me fitting into “normal” behaviors for someone my age, to accepting where I was and making me feel I could trust them. This shift to being “homeschooled” had a profound effect on my ability to process sensory stimuli around me and opened me up to being able to connect with the people around me better. Eventually, I was able to finally shut out enough of those competing sensory streams to learn to letterboard.
However, it’s important to make a few things clear: first, this took a long time. Also, I wasn’t homeschooled in the traditional sense - I was in an Applied Behavioral Analysis (ABA) program from the age of three and a half until around I was fourteen. Third, I was made to do classic ABA (i.e., table drills and taking away of toys as a motivator) only for a couple years. My home program started including much
Instead of letting my mom present information about nonspeaking autism and how it affected me, the Special Education person said it had to be someone from the Multnomah Education Service District. In other words, someone who didn’t know me was supposed to tell my classmates how to support me.
To first grade me, it was simple: one day I stopped going to first grade, and more people showed up to our house to play. Instead of a few horribly stressful hours spent around other children who only seemed to have one volume, I was home in what was a calm, safe environment. I only had to interact with a few people that I got to know well.
more play by the time I finished first grade, and eventually, I spent less time on drills and more time in a Parks and Recreation camp, for example.
The older I got, the more I was able to tolerate the things that had made classrooms so challenging because I’d been able to develop coping strategies that allowed me to triangulate sensory streams around me at home. I was able to practice this in a low-stress environment and got better and better at it.
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There are still a lot of things that cause stress for me, but I no longer feel so completely overwhelmed 24 hours a day. I try to maintain a daily schedule that has built-in regulation activities, and my family is pretty great about knowing when to push me out of my comfort zone to try something a bit different or entirely new. I credit my early home program as helping me hone the coping skills I needed which I rely on today.
I wonder where I’d be today if I’d continued to stay in the public school system, with its cacophony of child voices and walls covered in edu-posters, the countless smells and coloring-inside-the-lines, the undertones of dislike and discomfort. I doubt I would have made it. There’s no chance I would have been as successful in high school had I been in self-contained classrooms as was undoubtedly going to be my fate by third grade had I not been pulled out.
So I guess if you’re a parent considering the idea of pulling your nonspeaking autistic child from school, I can’t disagree with you there.
My only stipulation is that any home program be rich in supportive practices that feed your child’s ability to process their environment, never using punitive methods to teach and starting with your child’s special interests.
I do think we nonspeakers deserve to be included in public education, but when that system is as foreign to you as the world is in general, it will be very hard to succeed.
Navigating with Niko is part of a regular series at Autism Empowerment and Spectrum Life Magazine by Niko Boskovic. To read past and future articles, visit www.spectrumlife.org/navigatingwithniko.
Niko Boskovic is a 22-year-old autistic adult from North Portland, Oregon who uses a letterboard to communicate, advocate and share his passions and ideas. He graduated in 2019 with an Oregon high school diploma and currently takes classes at Portland Community College in writing and history. Niko is passionate about poetry, nature, family, and disability justice and is very pleased to be able to share his thoughts and experiences with youth, adults and families in autism communities through his monthly blog at Autism Empowerment and Spectrum Life, Navigating with Niko. Facebook: @NikoBoskovicPDX
Introduction to NeuroDiversity from a NeuroDivergent Lens
#AskingAutistics about NeuroTypical society
By Lyric Rivera, NeuroDivergent Rebel
I didn’t know I was NeuroDivergent for the first twenty-nine years of my life.
It was only in adulthood, a few months shy of my thirtieth birthday, that I would learn the truth about my brain (when I was finally diagnosed Autistic in a period of burnout and resulting mental health crisis).
Despite not having a language to describe the differences in my mind (Autistic, ADHD), I knew I was “different” even before my diagnosis, feeling like an alien living amongst humans (though HOW different I really was eluded me).
Autistic People have brains that diverge from what is considered “average” for the time and culture we are currently living in. We are sometimes described as “NeuroDivergent” because our brains diverge from a normative (or NeuroTypical) average
Diversity is a beautiful thing. Human brain diversity is a beautiful thing.
We all think and experience the world differently. However, many Autistic People (and others who have non-average brains) often find the world we live in to be hostile.
Most of the systems we have in society today have been set up by and for the nonautistic people and others within the neuro-majority (without considering the needs of those of us with various forms of neuro-marginalization). This is often harmful to those of us in the neuro-minority because our needs are not taken into consideration.
Historically, Autistic and other NeuroDivergent People have been (and often still are) excluded from society through pathologization and stigmatization. We are regularly told we are lesser and must try harder to “be normal” and “act like everyone else.” We are punished, mocked, scolded, and sometimes beaten (for things beyond our control).
Additionally, Autistic and other NeuroDivergent People are frequently blamed when we struggle in society (despite not having our basic needs met or proper support).
For most of my life, I blamed myself for my failures (without seeing how society’s systemic issues impacted my life). I was making myself unwell, trying to be something I was never
meant to be, could be, or wanted to be (but felt I had to be due to pressure from society).
Finding out I was Autistic and learning about the vast spectrum of human brains (NeuroDiversity) has forever changed how I viewed myself, other people, and the world around me. Ever since, NeuroDiversity (the diversity of human brains) has been the main topic I’ve been obsessed with.
What IS NeuroDiversity?
NeuroDivergent people’s differences are cognitive, often invisible, and impact how we interpret the world, process information, and interact with others.
NeuroDiversity argues that diverse neurological conditions, distinctions, and learning differences result from standard variations in human brain type, helping to challenge society’s prevalent viewpoint that neurological diversity is inherently unfavorable.
Neurological diversity includes both inherent and acquired forms of NeuroDivergence.
While Autistic People are one of the main focuses within the NeuroDiversity/NeuroInclusion movement, there are many ways a person’s brain can diverge from society’s perceived norms and standards.
In NeuroDivergent-led groups and circles, we often talk about the types of neurological/brain diversity people are born with. However, human brains are complicated and amazingly adaptive (but can also be quite fragile).
The brains of people (and other animals as well) can be altered based on experiences that occur in our lives (such as trauma, abuse, and injuries).
For example, people who manage to grow up in circumstances where they are nurtured and experiencing minimal trauma develop very different brains from those of us who grew up in broken homes or abusive and traumatic situations.
Even as adults, one’s brain can be forever (or temporarily) altered, causing one’s perception of their emotions, the world around them, or communication abilities to change.
For example, PTSD, Traumatic Brain Injury, Anxiety, and Depression are all acquired conditions that can majorly alter the way a person experiences life – long or short-term.
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When someone is NeuroDivergent, they are often NeuroDivergent in multiple ways.
Many of us have layers to our NeuroDivergence (or multiple NeuroTypes/brain types).
Autism and ADHD are both forms of NeuroDivergence I was born with that influence my perception and engagement with the world around me.
I also have an anxiety disorder (that I developed from living in a world where people were cruel and unkind to me).
NOTE: Though many (if not most) of my readers are Autistic, for this piece, I’ve opened up responses to include other NeuroDivergent voices within the conversation about a world that appreciates all varieties of brains.
Recently I asked all of my NeuroDivergent readers:
The NeuroDivergent urge to leave NeuroTypical society behind. Do you ever feel it?
Responses from NeuroDivergent contributors:
Anxiety is something I have acquired in my life (thanks to trauma) that significantly influences my thoughts, actions, and experiences.
Regardless of whether someone’s brain differences are ones that we are born with or are developed later in life, permanent or temporary, the more layers we have, the further we “diverge” from what is considered “average” and the more support we will need to thrive in systems that were designed by and for the NeuroTypical “norm.”
Because the world, its systems, and its people can be very unkind and cruel to NeuroDivergent People, many of us have fantasized about a world designed by and for us, where people understand, accept, and appreciate NeuroDivergent People fully - something far from the modern world of today.
(Editor’s note: Out of respect to Lyric and their #ActuallyAutistic and NeuroDivergent contributors, responses have been shared as submitted and are a sampling of many responses. To see posts like these on Facebook, visit https://www.facebook.com/NeurodivergentRebel
I used to, a lot. Now I’m retired and my time is my own. Lucky to live in a community with a large subculture that embraces and celebrates creativity, weirdness, accessibility, kindness and peaceful coexistence. Best I can tell, we’re a mix of NT and ND, free to interact or not or anything in between. We do a lot of listening..... really listening. Safe space/group/people.
– A. Pierce, she/her
Every day. If there was a way to make money and not deal with other people, I would be happy. – P.G. (she/her/they)
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Every single day!!! – Cara Lee, www.ivebeenautisticallalong.com
Yes. Every waking moment of every day. – Shelley Lynne (she/her)
I’m trying to plan a commune, actually – Cassie Dooley (she/her)
Yes. my mental health is way better since i quit my job and don’t HAVE to be around people besides my family (who all have ADHD like me lol). at work, i was told i needed to work on my “communication,” the whole while i didn’t know i was neurodivergent and wasn’t doing NT communication styles – Liz Mick (they/she)
Not really. I need other people of all different kinds, just as they need different kinds of people. – Fiona, a hyperlexic Xennial autist
All the time. The less I have to deal with NT’s, the better.
– Asa-Mari Zephirin (she/her/they/them)
Oh absolutely. I try to limit exposure as much as possible but it’s sometimes inevitable – Riley Fox (they/she)
That was me this year. I crawled into a hole and lived life online. – Ophelia (she/they)
I live in a tent with my kitty friend in a Redwood forest at the edge of a small coastal town on Wiyot land (“Humboldt County”). We limit our interaction with (NT) society as much as possible for my mental health (I leave the forest for about 4-5 hours/week to charge my phone and portable chargers), and that is to campus through the forest and across the back of a parking lot to an outlet outside of a building that gets little to no foot traffic...and that’s it, the rest of the time I’m staying safe (hiding) in the forest. A good friend helps me by grocery shopping for me (same five things every time, so at least it’s easy, lol) and brings me things. (They’re literally a life saver.)
I’m pretty much feral, I tried to fit, I just don’t. Lol. I’ll just hang out in the woods. – Enâûd Michel Zbdjla (they/them), @Zbdjla
Constantly. If I could live in a tiny house on my own little plot of land, craft, grow veg, keep chickens (for eggs) and a cow for milk, butter and cheese, I’d be happy.
– Melanie Jayne Page (she/her/Ms.)
I’ve been thinking a lot about this lately. Probably one of the main reasons we (ND’s) suffer in this world is because we have to deal with NT’s and their crap. – Tilly (she/her) from Uruguay
I feel this so much. This is why I work with neurodiverse kids. Sometimes being at work is like an escape for me – Amanda Kay (she/her), non-autistic, neurodivergent
Doing it right now. I’m retired, and have retired from society, and intentionally isolate. I shop twice a month (escorted) and don’t drive. First time I’ve ever felt safe enough to heal. – jmg (she/her)
All the frigging time! Ever since I was little! – Anonymous (she/her)
I’ve been trying to do this since I was 4 years old. I’m like pushing 50 now. – Anonymous
To join in the conversation, here is the link to the original Facebook post: https://bit.ly/neurodivergenturge
This article is part of a continuing regular series at Autism Empowerment and Spectrum Life Magazine called #AskingAutistics by Lyric Rivera. To read past articles and get connected with autistic community members, visit www.spectrumlife.org/askingautistics
Lyric Rivera 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
Navigating withNik o
Navigating with Niko: Feeling the Storm Understanding Family Stress as a Nonspeaking Autistic
By Niko Boskovic
There is life af T er hard T imes, and beau T y is found in T he pla C es we had T o grow in T o no T knowing wha T was wai T ing for us.
When COVID was first brewing, my family was already in a storm of its own. My parents were going through a separation, and life was very messy. I won’t go into details, but it was stressful, anxiety-inducing, and sad.
There were numerous ways in which I felt it more intensely than how I experienced the everyday stress of living in a world that was moving too fast and too noisily for my autistic brain. For me, the hardest part was feeling their sadness: the deep despair at watching them accept that the hopes and dreams they brought to the marriage turned into different outcomes.
It seems like a lot of families like ours are going through a rough patch at the moment, and maybe I can speak to what that might feel like for your nonspeaking family member. In a word, it’s awful.
I don’t speak for all nonspeakers and know that my synesthesia affects the ways I interpret emotional situations, but I can say that there were times when I couldn’t escape the stress and would melt down from the intense emotions being given off by others.
If there was something going on in the house, I would know about it. It’s just the natural consequence of having such sensitive sensory streams that pick up on everyone’s moods and feelings. I would go so far as to admit that I knew things were bad a long time before that became official.
With that in mind, I’d like to remind parents that their nonspeaking kids don’t have the same avenues of self-care as nondisabled kids do; therefore, there may be many so-called “behaviors” that come up which may, in fact, be responses to traumatic situations for which no one is offering any respite
In fact, no one may even recognize or connect a person’s behavior to the failing relationship, but may instead focus their attention on the negative behavior. This can turn into its own course of action which can make your nonspeaker feel that it’s their behavior that’s driving the family dynamic down.
Therefore, it’s super important that parents recognize that their autistic child is probably aware of what’s going on and that they should find ways to acknowledge and support their child’s efforts to process these feelings.
Another area that merits parental attention is what’s said in front of us. Nonspeaking doesn’t mean stupid. We are often so bombarded with sensory stimulation that we may appear to be “in our own world.”
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I have news for you: we hear a lot more stuff (and unfortunately, a lot of inappropriate stuff) that you would probably cringe to know we know. It’s just something that doesn’t really make sense, but seems to be a remnant of ableist attitudes of not seeing intelligence in all its forms.
Lastly, I want to share a story about when it was really bad. It was probably a few months before my parents told us they were going to split up, and my mom was trying to figure out her next steps. She was home with us full-time and covered my support needs when I wasn’t with a Personal Support Worker, meaning that she was my primary everything in those days.
I could feel more of her emotions than anyone else’s because of how much time we spent together. So when shit got bad, she was like the Rosetta Stone in terms of what it meant. I felt her sadness, her worry, her hopes; she revealed with great vulnerability what she was going through, and told me what she was going to do about it.
It made me feel respected and, most importantly, not responsible for the changes that were coming. It wasn’t easy, and it took our little family some time to find our rhythm, but two years later, we are in such a different place, and life is real, human, and honest.
There is life after hard times, and beauty is found in the places we had to grow into not knowing what was waiting for us.
Navigating with Niko is part of a regular series at Autism Empowerment and Spectrum Life Magazine by Niko Boskovic. To read past and future articles, visit www.spectrumlife.org/navigatingwithniko.
Niko Boskovic is a 22-year-old autistic adult from North Portland, Oregon who uses a letterboard to communicate, advocate and share his passions and ideas. He graduated in 2019 with an Oregon high school diploma and currently takes classes at Portland Community College in writing and history. Niko is passionate about poetry, nature, family, and disability justice and is very pleased to be able to share his thoughts and experiences with youth, adults and families in autism communities through his monthly blog at Autism Empowerment and Spectrum Life, Navigating with Niko. Facebook: @NikoBoskovicPDX
Photo credit: Jordan Gonzalez
Echolalia: When Nature Calls Understanding
the Meaning Behind Repeated Phrases
By Dr. Anson Service, Psy.D., LMHC aka Neurodivergent Doctor
The year is 1985 and I am a sixth grader. A friend and I are at recess playing a rousing game of four square with one of those large red bouncy rubber playground balls that you can smell and hear the sound of just by me mentioning it. If you can hear that ball bouncing in your memory right now, you likely also remember the cold sting of that punishing orb hitting your face at 300 mph.
As a young person, I did not typically do well with the more physically demanding playground sports, such as dodgeball, the headlock experience, and one unfortunate game that I was particularly not very fond of... wedgie time. When I wasn’t actively dodging those red balls of death during one of the frequent games of dodgeball that I was somehow involuntary part of, I spent what was left of my precious playground time with a friend playing four square, as far away from the dodgeball court as possible.
I remember one particularly proud moment for me during four square where I smashed the ball into the correct square with such force (likely unused ADHD, anger, and anxiety energy) that it rocketed out of the square, too far and too fast for my worthy opponent to return the volley. My point! Rumor has it that this ball is orbiting the Earth to this day.
After my victorious play, I confidently let out a phrase I had said at least three million times over the previous few weeks. The phrase: “Now that’s what I call a split personality.” This time, however, my friend looked at me with a puzzled look and asked, “Why do you keep saying that?”
It was at that moment that I realized, with the blunt help of my friend, that apparently, I had been saying that particular phrase far too often, and it was also then that I learned others thought it was weird. In retrospect, I admit that the phrase made no sense in that context. Nobody knew what I was talking about when I said that... and I didn’t know why I said it either. I just felt like it.
Several weeks prior to that amazing four square win, I sat on the floor in the living room and watched the television commercial with Tony the Tiger, esteemed mascot for Frosted Flakes, as he said, “Now that’s what I call a split personality” during the 30-second ad.
To this day, I still do not know why he said the line about a split personality, but he did, and when he did, it hit my brain just right and later that day I began echoing that phrase, usually at inappropriate times that made no sense.
However, I distinctly remember several occasions where it not only made sense in the context of the situation, but the phrase was a complete hit with my friends, and everyone laughed until we all threw up. At least that is how I remember it.
Okay, maybe we didn’t throw up... or laugh very much at my joke. Now that I think back on it, I recall being hit in the face with the red ball, then I threw up, and then everyone laughed. Those were the days.
But to stay on topic here, this is one of my many, and I do mean many, experiences with echolalia over the course of my lifetime, and I continue to experience it as an adult on a daily basis.
Echolalia is a phenomenon where a person repeats the speech or sounds of other people or something they’ve heard.
For those diagnosed with autism, about 75% experience echolalia1 but with most people I talk with, it seems to be thought of as a condition of childhood rather than something autistic adults experience.
It is also a condition that individuals with Tourette’s syndrome experience, as well as many with ADHD2, and other conditions3. For me, it is natural, and not forced. In fact, it is unnatural for me to not engage in echolalia.
There are several types of echolalia4:
• Immediate echolalia: This is when a person repeats what they just heard moments before. It can be used as a conversation or communication strategy, whether the person knows they are using it or not.
One might hear, “It’s a beautiful day out,” and respond with, “It’s a beautiful day.” Or maybe someone comes out of the bathroom and with a quiet tone, almost a whisper, embarrassingly instructs, “Do NOT go in there,” to which the person loudly echoes, “Do NOT go in there.”
• Delayed echolalia: This is repeating something such as, “Now that’s what I call a split personality,” days later. The echoed phrase or sound can be delayed by a few minutes, a day, or maybe a year or more.
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Echolalia: When Nature Calls, continued from page 49
• Functional echolalia: This occurs when the echoed phrase, sound, or word conveys meaning and is useful in communication such as “Ding, fries are done” if, indeed, the fries are done. This line was from a Christmas song parody from more than 20 years ago.
• Non-functional echolalia: This consists of repeating something that does not necessarily make sense in the context of the situation, such as, “Now that’s what I call a split personality.”
This was said in a moment of excitement for me as a sixth grader and could be considered soothing. Another example is portrayed in the movie Shine starring Geoffrey Rush where his character says, “It’s a mystery” repeatedly, often when it does not fit in the context of the conversation.
• Mitigated echolalia: This is the basic echo of a word or phrase, but with a variation to better fit the situation. An example might be if someone asked, “Did you throw that red ball at Anson’s face so hard he can taste the rubber?” to which the person might respond, “I threw the red ball at Anson’s face so hard he can taste the rubber.” It was not the exact phrase, but close enough to convey that I could taste the red ball.
• Unmitigated echolalia: This is using the exact phrase, sound, or word without variation, which may or may not be appropriate to the context.
• And then there is my favorite form of echolalia: Scripted Speech. This is the repeating of movie lines, musical lyrics, TV show lines, or even what can be most terrifying; what YouTubers say.
I tend to echo phrases from Jim Carrey movies and shows, such as, “I like it a lot,” and “Alllllrighty then.” However, unlike the Tony the Tiger phrase, when I use these repetitive phrases, they often add to the hilarity of the situation I am in at the time and make contextual sense. Or so it seems to me.
Researchers suggest we learn to repeat things as children to help develop language skills. For some adults, especially whose verbal skills may be different, echolalia can be a conversation strategy and can help them communicate what some of their needs are.
It can be also be used to self-stimulate (stimming) which can soothe a person in a time of stress, excitement, or dysregulation. Additionally, many of us neurodivergent people rely on internal scripting to communicate. Having a choice of conversation starters, questions, or responses that are cued up in the brain can help reduce anxiety and provide added confidence in social situations.
Echolalia may not always make sense when used, as was often the case with my split personality quote. As I look back on my childhood, which I remember relatively little of, I remember using echolalia even when I did not know the meaning of what I was saying.
I am unsure if I repeated things as a toddler without yet having command of the English language at that age, however, echolalia for many is just that: repetition of sounds, phrases, or words without necessarily the need to understand them.
While echolalia may seem cute to some, or awkwardly funny when imagining me celebrating a four square point by saying a nonsensical phrase, echolalia is also thought to potentially delay the development of communication skills for some.
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Furthermore, it can be frustrating to the autistic individual when trying to communicate their needs or accurately express themselves when they are limited to echoed phrases or words. It can be equally frustrating for those trying to receive that information.
Imagine how difficult it would be for a healthcare provider if I simply repeated, “I like it a lot,” in the voice of Jim Carrey when undergoing a semi-invasive, yet routine sports physical exam.
Furthermore, imagine how echolalia might have inhibited my social game in high school if I repeated to my friends what I heard my doctor say earlier during said routine sports physical exam, “Turn your head and cough,” at an inappropriate time. However, I am struggling to imagine a time when that might be a socially appropriate phrase to echo to my friends at any time.
As a semi-responsible adult, I still experience echolalia on a daily basis, and it is simply part of my life and an inseparable part of who I am. Some sounds, phrases, or words simply “hit my brain a certain way,” and off I go, repeating them. I have largely learned to mask this trait of autism in front of others; however, I find myself experiencing echolalia while alone.
There is no shame in that, and at times, it can be stimulating. However, my echolalia is not fun for everyone. Nobody, and I do mean NOBODY in my family wants to sit next to me when watching certain television shows or movies. I tend to repeat certain lines or sounds throughout the program, especially if it is comedy-based.
And heaven help anyone who sits next to me during any of the Austin Powers, Dumb and Dumber, or Ace Ventura movie franchises. I make it impossible for anyone to concentrate on the movie. But I will have a great time watching it and repeating phrases and sounds.
Like many other traits, features, and symptoms of autism, we must ask if echolalia is a deficit. Is it problematic, and if it is, is it enough of a problem that it requires some form of intervention?
I prefer to think of those who experience echolalia as deserving of support rather than attempts to stop it. While it may not always be the preferred method of communication amongst all people involved, it appears to serve a purpose for many, and it may be the best a person is able to do at that time.
Supporting our echoing adult friends may include talk therapy with a trained mental health counselor who can provide a safe space for an individual to take their time to express themselves in a way that they feel most heard and validated, even if that means engaging in some echolalia. Some may consider language and speech therapy to assist in expanding communication strategies. Some have considered
medications to be effective if the condition becomes less manageable and disruptive to their life.
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. www.NeurodivergentDoctor.com Echolalia: When Nature Calls, continued from page
It is important that others recognize they have a special opportunity when communicating with someone with echolalia. They can provide unconditional acceptance, empathy, understanding, and positivity to someone who needs it.
We must all seek to listen and understand rather than correct and stifle, as many autistic individuals may have a lifelong history of suppressing echolalia or being ridiculed for it.
As we all seek to accept and celebrate neurodiversity, we can acknowledge its purpose and advocate for acceptance and empower individuals with echolalia in a more inclusive world.
“Take care now, bye-bye then.” (Ace Ventura, When Nature Calls).
References:
1. Van Santen JP, Sproat RW, Hill AP. Quantifying repetitive speech in autism spectrum disorders and language impairment. Autism Res. 2013;6(5):372-383. https://pubmed.ncbi.nlm.nih.gov/23661504/
2. The A.D.D. Resource Center. The effects of ADHD on communication. https://www.addrc.org/
3. Berthier Marcelo L., Torres-Prioris María J., LópezBarroso Diana. Thinking on Treating Echolalia in Aphasia: Recommendations and Caveats for Future Research Directions. Frontiers in Human Neuroscience. 11. 2017. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5376621/
4. “Functional Categories of Delayed Echolalia,” by B. Vicker, 1999, The Reporter, 4(2), pp. 7–10. Indiana Institute on Disability and Community, Indiana University. https://hdl.handle.net/2022/9126
To read other columns by Dr. Service, visit: www.SpectrumLife.org/neurodivergentdoctor
Check out his YouTube channel at www.youtube.com/@NeurodivergentDoctor
Autism, Growing Up, and Defining Friends Age-Appropriate Respect in Social Groups
By Judy Endow, MSW, LCSW
As an autistic person, I have difficulties in the social arena in many ways. This was especially true during my growing-up years. Even today, as an adult, automatic social understanding is not my strong suit. I am, however, able to continually learn new things that enable me to do and be all I want in this world.
Today, in my professional work, I am able to provide some input to a variety of organizations and schools regarding individuals with autism labels. One thing I consistently see, regardless of where I go, is the practice of therapists and teachers referring to all the children in the same group as each other’s friends.
This practice feels right and good in preschool groups. However, the older the children, the more uncomfortable I become when I hear the adult define all group participants as friends.
How Friendship Changes Over Time as Children Grow Up
I would like us to think about how the concept of friends changes as children grow and mature socially. When in preschool, a small child’s relationships are primarily with adults. Other children are defined as friends only when they are in close proximity, such as in the same room.
This slides into the early primary grades for some, but not all, children. An example that illustrates this is birthday parties. In the very young grades, it is not unusual to invite everyone in the class to a birthday party because they are all friends.
As children go through grade school, they grow and develop in all sorts of ways, including the way they define and participate
in friendships. They come into a cooperative friendship style, meaning they cooperate fairly with others.
Children this age will spend time making the rules and deciding who is in and who is out of their friendship circle. Often, this is short-lived, and a new circle or club will soon be formed. If a child does something nice, they expect their friend to do something nice in return.
As children mature, they stop keeping score in their friendships and start confiding thoughts and feelings to a select few whom they have identified as friends. They are able to help each other problem-solve. Often, during this stage of development, children have the joined-at-the-hip experience of a best friend. As teens navigate through high school, friendship begins to
become defined by the experience of emotional closeness. There is less possessiveness, and individuals often have more than one circle of friends. Trust and support are highly valued, as is remaining close over time, even if separated.
As I grew up, my autism meant that I was not on par with same-aged peers in my friendship development. This is the case with most children with autism that I see today.
Often, autistic children and teens are placed into social groups [sometimes called social skills classes or social communication therapy] in an effort to give them support in an area that poses difficulties.
In these social groups, there is a common practice of the leaders, therapists, or teachers referring to all the group members as each other’s friends, regardless of the chronological age or the development of the individual participants.
Referring to all kids in the group as friends is a preschool practice. It works well in preschool because, in reality, all of the children really are friends! After this period in life, not all participants define their friends by proximity.
In the case of developmental differences, older children may be developmentally at a younger age. It may seem reasonable to target social connection at the current developmental level, referring to all the children in the group as friends. I have done this myself, but I am now questioning this practice.
My Personal Experience
I am reflecting on my own growing up and know that when working one-on-one in a therapy session, it was beneficial for the therapist to meet me at my current developmental level.
For example, I can remember talking about how a friend was not sharing back and how wrong that was when I was seventeen. This area of friendship understanding typically happens during early grade school years, but at seventeen, that reflected my social development level.
This mismatch between chronological age and social development is par for the course for those of us with autism. Even so, addressing a group of teens as if they were preschoolers is not only quite disrespectful – it is indeed ableist!
Personally, I am willing to work on what is difficult for me, but I do not appreciate my difficulties being underlined publicly. I do not want you to broadcast your assumption publicly that I am socially at a preschool level.
You see, even if I am at a preschool level in friendship development, when you interact as if I am a preschooler, others assume my intellect, interests, and whole being are preschool levels.
When you refer to everyone in the room as my friends, regardless of whether I know them or not, assuming a preschool concept of friendship development, it invites the rest of the world to see me as incompetent, and they then treat me as a young child.
Your behavior sets the stage further to impede my ability to grow and mature socially because now people will only extend preschool opportunities to me. Your words defined that context.
Conclusion
When I observe groups today, I wonder if older children and teens feel “less than,” “othered,” or “treated like a baby” when the group leader starts by saying the usual, “Let’s do a check-in with our friends.”
Even when I was developmentally at the stage of defining my friends by proximity, intellectually, I knew others my age did not do it that way. In fact, I knew that was one of the reasons I was in the social group!
I have more questions than answers at this point, but for now, in my practice, I do not use these sorts of phrases in group settings.
Instead, I am addressing and supporting friendship at an individual’s developmental level in private sessions I am utilizing age-appropriate language rather than developmentally-appropriate language in group sessions
I do this out of respect. It never felt good to me as a teen when others interfaced with me as if I were much younger, treating me like a baby and assuming my incompetence. This is why I now begin any older-than-preschool groups with, “Let’s check in with one another.”
REFERENCES
1. Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.
2. Endow, J. (2013). Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.
3. Endow, J. (2009). Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.
This article was originally published for Ollibean and also appears on Judy Endow’s blog, Aspects of Autism Translated at www.judyendow.com.
Judy Endow, MSW, LCSW, maintains a private practice in Madison, Wisconsin, providing consultation for families, school districts, and other agencies. Besides having autism herself, she is the parent of three grown sons, one of whom is on the autism spectrum. Her latest book, Autistically Thriving, can be purchased at www.judyendow.com
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