Welcome to the Fall 2024 edition of Spectrum Life Magazine!
As we fall into autumn, Autism Empowerment embraces this new season with a renewed commitment to fostering understanding, inclusion, and empowerment for youth, adults, and families within autism and neurodivergent communities.
This issue features a cover story especially close to my heart, as my son, Ryan Krejcha, begins his freshman year at the University of Washington in Seattle. Diagnosed with autism at age two, Ryan’s journey—from regressive autism to pursuing his passion for Atmospheric Sciences— offers hope, inspiration, and a reminder that every path is unique. See A Forecast for Success (page 7).
In Connections for our Community (page 5), we discuss ways to elevate neurodivergent voices and strengthen community bonds. We also highlight Fall Awareness Month campaigns, including Learning Disabilities and National Disability Employment Awareness, in Ask Spectrum Life (page 35).
In #AskingAutistics: Having Our Needs Fully Met (page 15), we explore the importance of creating safe spaces for autistic individuals. Meanwhile, A Day in the Life of Tanya English (page 19) shares the powerful story of an autistic parent advocate and social connector who exemplifies resilience and dedication.
Niko Boskovic reflects on personal challenges in Navigating Grief and Growth (page 26) and expresses himself creatively in The Power of Poetry (page 30). A poem from Niko (page 32) and the Autism Empowerment Word Search (page 33) follow.
Education continues to play a central role, with Creating More Equitable Spaces (page 38) examining how technology can support inclusive learning, and Four Special Education Takeaways for Parents (page 40) providing practical strategies for proactive engagement.
Autism, Direct Instruction, and Having Friends (page 49) explores personalized approaches to teaching friendship skills, while Eating, ARFID, and Autism (page 52) looks at the intersection of autism and restrictive eating challenges. We also offer personal insights and coping strategies in #AskingAutistics about Meltdowns (page 43) and Anatomy of an Autistic Meltdown (page 46).
Wherever you are on your journey, I hope this issue provides you with inspiration, encouragement, and a sense of connection as we continue building a stronger, more inclusive community together.
Warmly,
Karen Krejcha
Executive Director & Co-Founder: Autism Empowerment™
Editor: Spectrum Life Magazine™
www. spectrumlife.org
FALL 2024 | VOLUME 14, ISSUE 2
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 Neurodivergent communities.
A forecast of success! UW freshman Ryan Krejcha shares his autism journey from diagnosis at age two to college freshman at age 18. (page 7)
Photo courtesy of Karen Krejcha
Connections for our Community
Welcome to the Fall 2024 issue of Spectrum Life Magazine!
By John Krejcha
Hi everyone! I am John Krejcha, Program Director and Co-Founder of Autism Empowerment, the nonprofit that is both the publisher and creator of Spectrum Life Magazine. Each quarter, I share updates and insights into our programs and services.
The month our Fall issue is being released (October) is the same month as a number of national awareness campaigns that impact many youth, adults, and families in autism communities.
National Disability Employment Awareness Month (NDEAM)
We’ll be sharing resources connected to each awareness month later in this issue in our Ask Spectrum Life column on page 35. This is also a good time for us to share with you some slight but important changes we are making within our magazine and websites.
Starting this issue, we have changed the subtitle on our cover page from “The Pacific Northwest’s Premier Magazine for Autism Communities” to “The PNW’s Premier Magazine for Autism and Neurodivergent Communities.”
By making this slight but powerful change, our goal is to help more neurodivergent people feel included, accepted, and seen and give them educational resources that support their journey. So many people on the autism spectrum live undiagnosed. Whether or not you have a diagnosis, if you relate with our community in some way, we invite you to stay connected.
Even before the founding of Autism Empowerment and before the first word was published in Spectrum Life Magazine, it was clear that a vast majority of autistic individuals have coexisting and intersecting conditions. Some of the more common ones include ADHD, depression, anxiety, OCD, ARFID (which we explore in this issue), sensory processing issues, Pathological Demand Avoidance, learning and communication differences, and the list goes on and on.
The reason we cover so many of these conditions in the pages of Spectrum Life and on our websites is because they impact so many people we serve. We want readers to know they are not alone. We encourage readers to empower themselves and
use what they learn to help themselves and others advocate for the support and accommodations they need at home, at school, in the workplace, in their health care, in their faith and social communities, and in the world at large.
Although each of us has challenges, we also have gifts and strengths. Together, we aim to celebrate the wins and help navigate the adversities. Although we may not physically be with you as you’re reading our issue, we are with you in heart and spirit, doing what we can to help you feel more connected and inspired!
Since our inception in June 2011, Autism Empowerment has been devoted to enriching and empowering the lives of youth, adults and families within autistic, neurodivergent and cross-disability communities.
Through our four foundational pillars of Accept, Enrich, Inspire, and Empower and our invitation for each one of us to be an Ambassador for Acceptance of All Abilities, we have been dedicated to positively changing lives of people within our community as well as meaningfully changing the culture in which we live to be more inclusive, accepting and understanding.
These are lofty goals, and we are a small (but mighty) grassroots nonprofit with founders and volunteers who feel called to serve. We realize there is a lot of need and diversity within our community.
Due to our size and resources, we know we can’t be everything to everyone, particularly since so much of our advocacy work takes place virtually and through educational media. But we’ll do the best we can with what we have! We truly appreciate our volunteers, our donors and the funders who believe in us and invest in autistic and neurodivergent potential.
We believe that our community and world become more purposeful when more people with shared goals move positively in the same direction.
If you’re not already an Autism Empowerment Ambassador for Acceptance, please consider this your official welcome!
Come as you are! Let your Light shine,
John
Photo credit: Karen Krejcha
A Forecast of Success Ryan Krejcha’s Journey from Autism Diagnosis to UW Freshman
By Karen Krejcha
In this special cover story, I have the distinct pleasure of interviewing my son, Ryan Krejcha, as he embarks on an exciting new chapter in his life. Diagnosed with autism at the age of two, Ryan’s journey has been marked by resilience, determination, and an unwavering commitment to pursuing his passions.
From overcoming early challenges, including regressive autism and a period of being nonspeaking, to thriving in his academic career, Ryan has always forged his path with courage, curiosity, humor, kindness, and grace. Now, at 18, he stands at the threshold of his freshman year at the University of Washington in Seattle, where he plans to study Atmospheric Sciences—a field that has fascinated him since he was five years old.
Ryan’s story is one of growth, hope, and inspiration. Through his experiences in education, his academic achievements, his volunteer work with Autism Empowerment, and his dedication to his interests, Ryan offers valuable insights for other autistic youth, their parents, and their families.
Fun Fact: Ryan appeared on our first Spectrums Magazine (now Spectrum Life) cover with his dad, John, in our Summer 2016 issue. Now, in Fall 2024, he is on the cover again. Our family is incredibly proud to share his journey.
Hi Ryan! Thank you so much for taking the time to sit with me for this interview. I know you have a busy schedule as you prepare for your freshman year at the University of Washington, so it means a lot that you’re here to share your story.
I’m excited to dive into your journey, from early childhood through high school, and into exciting new adventures ahead.
Please tell Spectrum Life readers a little bit about yourself and your family.
Hello! My name is Ryan Krejcha, and I am 18 years old. I am thrilled to be attending the University of Washington in Seattle starting this fall— Go Huskies!
I have been interested in studying the weather from almost as early as I can remember, and my passion for the weather has led me to study Atmospheric Sciences at
the UW. I consider myself to be a pretty easygoing and friendly person, and I enjoy hearing other people’s stories.
My parents have been so amazing to me, even starting Autism Empowerment to help out people like me, so I’m excited for this interview so I am able to return the favor.
I also have to give a shoutout to my great sister, all my grandparents, and my beautiful cat, Zula, who I love so much and will miss dearly when I’m at the UW.
At age 18 months, you started showing signs of regressive autism and became nonspeaking for a while. Do you recall any of that period or what it was like to regain your speech?
I don’t recall anything from that time, as I was way too young to remember anything. I have heard from my parents that I did actually speak before I stopped speaking. Apparently, some doctors were worried that I would never speak again, but I’m sure I knew in my heart otherwise; it just wasn’t the right time, I guess. I couldn’t even imagine how excited my parents were, and probably myself as well, when I regained my speech around age 3 1/2.
What are your earliest memories?
Most memories I have from my earliest years are pretty foggy, as with most people, but one of my earliest memories was regularly traveling to a medical center off Highway 26 near Beaverton, OR. I remember being in the waiting room there eating Bugles, which are oddly shaped chips.
I don’t remember the reason why I was there, though I believe it was some sort of research after I got diagnosed with autism. These trips while sitting in the car are probably what first got me fascinated with maps and geography, one of my passions other than the weather.
Your first schooling experience was at the Early Childhood Center (ECC), a special education preschool in Vancouver, WA. Was there a moment that stands out to you as particularly significant or positive?
I think I speak for most children, whether neurodivergent or not, when I say that snack time and nap time were my favorite moments in preschool. Other than that, I do remember my teacher, Ms. Boule, was very nice to all of us kids, though I couldn’t really elaborate on a specific moment that stood out to me as I was still so young.
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I do also vaguely remember being pulled out to nearby portable buildings, probably for a speech pathologist or something like that.
You attended and participated actively in every one of your Individualized Education Program (IEP) meetings from Kindergarten through 12th grade. Tell us about this experience.
Having been able to be in the room at my own IEP meetings was a tremendous blessing for many reasons. First, I could understand myself more and how I worked. Something like “student needs to be more responsive” isn’t helpful on its own without understanding why said student isn’t being responsive. Being able to speak up for myself and explain why my behaviors were happening also let the teachers understand, and we could find solutions together that everyone was happy with.
Secondly, being in there with teachers made me realize that my teachers aren’t my worst enemy, and that they are truly there to see me succeed. I believe that getting connected with my teachers is a big reason why I ended up liking my teachers more, being able to see their perspectives as well as my own.
Lastly, if my parents or any faculty had any more serious concerns, they could always just ask me to step out of the room for a couple of minutes. Any more serious concerns and uncomfortable topics could always be better resolved by just not talking about them in front of my face.
I would always encourage parents who may be reading this to invite your children to their IEP meetings, even if it may feel awkward sometimes.
What were the most helpful accommodations you received in elementary school that made a difference in your learning experience?
The most helpful accommodation I had in elementary school was being able to do classwork in a secondary environment. I was able to take my classwork to a different room and work on it there with fewer distractions.
Most importantly, I was able to take my tests in a more distraction-free environment. Even though deep down, I know they probably aren’t looking at me, other students looking
around can be distracting even in a quiet environment because noise isn’t the only thing that can distract people.
Middle school can be a challenging time for many students. How did you navigate those years, and what did you learn about yourself during that time?
Middle school is really the time where you grow and discover more about yourself, and it can be a very confusing time. I struggled with the transition from elementary to middle school and my seventh grade year in 2018-19 was the toughest year of my life.
I didn’t have many friends in school during this time, so I ended up wanting to branch out from school, and became a founding member of the Autism Serves Kids Care Club, which featured monthly service projects to help out others in the community.
The other kids in this Autism Empowerment group were amazing to socialize with and helping out the community lifted my spirits throughout this difficult time. I grew to realize about myself that being a part of a group bigger than yourself means so much and can be a beacon in the darkness.
In eighth grade before the pandemic, I was even able to start turning myself around in school to get amazing grades, which I would keep up all the way through my high school graduation.
Did you face any particular challenges or moments of discrimination during these years, and if so, how did you overcome them?
Luckily, my great relationships with my teachers, in addition to going to IEP meetings and student-teacher conferences, led me to have a relatively smooth path. However, there were definitely some challenges. I am a very curious person, and really enjoy reading books, especially dystopian and sci-fi novels—if you want a book recommendation, I would recommend Day Zero by Kelly deVos. A friend recommended it to me and it was amazing!
Anyway, in seventh grade, we were reading this book called Refugee by Alan Gratz, another amazing author, which follows three different kids’ journeys towards refuge, and the teacher basically wanted the reading to be a 6-8 week project. The teacher assumed people wouldn’t read ahead, but we would have like 20 minutes after class to do a quick assignment, and so we had to sit there doing nothing, so I decided to read ahead, and I ended up finishing the book about a month before we were supposed to finish it.
When she found out, we clashed pretty hard and our relationship never really recovered from that, and so whenever I would ask for clarifications on assignments related to the book, she basically said that you shouldn’t have been reading ahead, which I couldn’t help myself with, and that I was basically on my own, and this led me to get the worst grade a teacher ever gave me. After this experience, I wanted
to make sure that I would never get a grade that I don’t deserve ever again, and so while I still definitely read ahead in books, I made sure that it was okay with the teacher and that there was no friction which could lead to undesirable results for everyone involved.
Another moment that stands out to me is in fourth grade. I had this pullout class throughout elementary and middle school to help with my social communication skills, which honestly just became a social hour and study hall with other neurodivergent kids, and I made this joke about how a kid who I knew very well was a “new person” when they got a new pair of glasses, and this seemed to set the teacher off, making baseless assumptions that I couldn’t recognize faces I’d seen before but slightly changed, something that much later I learned was called “face blindness.” While it is a real thing, I made it clear afterward that it was just a joke but the teacher seemed to think that I was just lying and needed more “help” than I really needed.
You ended your 8th grade year at the beginning of COVID and started high school during the pandemic with virtual learning. How did that experience affect you?
My eighth grade year was going very well, and I was getting a solid group of friends going, and my teachers were nearly perfect. I had my favorite math teacher of all time, an amazing science and leadership teacher, and even a humanities teacher who had us write personal notes to Trevor Noah with our thoughts on his book, Born A Crime. It all came crashing down on March 13th, 2020 when the schools closed for COVID until late April, though we all knew deep down that it would be closed for the rest of the school year.
At first, it felt like a nice extended spring break, but then spring blended into summer and life got really boring without being able to go back to school. Virtual learning at the start of my freshman year was very awkward, with no one turning on their cameras, and there wasn’t really much learning going on at the time.
Even going back to hybrid, everything was always “6 feet apart” so there wasn’t much interaction, and while my ninth grade teachers tried their best, the only specific thing I still remember from that year was learning “SOH CAH TOA” in geometry, basically a mnemonic device to remember trigonometric ratios. There wasn’t much learning going on at that time either.
When you finally had the chance to return to school in person after so much time, did you find socialization and making friends easier or more difficult? Why?
During hybrid learning in my freshman year, I wasn’t able to make any friends at all due to the aforementioned “6 feet apart” rule to prevent the spread of COVID. However, once the start of my sophomore year rolled around and all restrictions save for masking up were lifted, I was able to get a solid group of friends with people in my different classes, especially my Algebra 2 class.
I think the fact that everyone post-COVID was in the same boat of not really having any friend group helped tremendously in being able to make friends, with such a large pool of people available. The friend groups I made during my sophomore year
ended up being the best group of friends I have ever made, and I still regularly talk to them even after I’ve graduated.
Your academic achievements in high school were impressive, taking multiple AP classes, graduating with a cumulative GPA of 3.88, and earning significant scholarship money. What strategies or habits helped you succeed?
The best strategy in my opinion to succeed in any class is to have a great relationship with your teachers.
They truly want to see you succeed, even the ones I may have disliked or who had different teaching styles. Teachers are happy to answer your questions in 99% of cases, and you might even be surprised with how happy they are to answer.
One time in my sophomore year, I sent an email out at 11:05 pm asking for help from my Algebra 2 teacher, and they responded within 10 minutes! While obviously this isn’t the norm, teachers still want to help you out to see you succeed by answering your questions.
Another thing is being active in class discussions; talking in these discussions helps you get a better grasp on concepts and helps the teacher to see what concepts might need more work to get a good understanding for everyone.
Another strategy I would recommend for parents who may be reading this is to encourage your children to apply for scholarships!
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I would not have gotten as much scholarship money as I did, earning over $60,000 in scholarships, if I hadn’t been encouraged by my parents to apply for as many as possible.
Tell your students to think of it like a job, might as well earn that scholarship money now rather than pay off student loans later.
What accommodations or supports were most beneficial to you in high school, and how did they help you reach your goals?
While I didn’t utilize as many accommodations in high school, the most beneficial one was being able to have extended time on my AP tests. This allowed me to take the tests in a smaller setting, as well as helped me from getting distracted and gazing into the ceiling during tests.
If you want to find out more information, reach out to your counselor. You can also find more information at https://accommodations.collegeboard.org. Don’t wait to reach out, because the deadline to request your accommodation for this school year’s AP tests is January 24th, 2025.
Looking back, what advice would you give to other autistic teens who are navigating high school?
My number one piece of advice is that the best way to make friends isn’t by going up to people during lunch or other passing time as other adults may suggest, it’s by talking with other students in your classes.
Make some small talk with the people next to you, and you never know what friends you can make. It has worked in almost every class for me, whether it be a core class or an elective.
You have volunteered with Autism Empowerment in many ways over the years, from the Autism Serves Kids Care Club to mentoring to special events. What inspired you to get involved, and what have you enjoyed most about these experiences?
I originally was inspired to get involved through my parents, who originally brought the idea to me as a way to get involved in my local community and to help other people. I was excited about becoming a founding member, and the service-learning projects that the club did still hold a very special place in my heart.
My favorite experience was when we would create wellness kits for homeless veterans around my community, and then deliver the kits to a local veterans center in my area, where we would get to learn about the stories that some of the veterans shared about their time serving our country, and we would get to see the first-hand impact of what we were doing.
You also helped with an indie film project co-produced by Second Player Score and Autism Empowerment called Hold My Beer, doing the slate. Tell us more about that experience.
In late 2023, I was approached with an offer to be a second assistant camera (2nd AC) in an upcoming short film project called Hold My Beer that included local neurodivergent talent and crew from Vancouver, WA. For context, I had just started taking a video production class in my senior year of high school, where I later went on to be the producer of our school’s weekly video news just one semester after I joined the class.
The 2nd AC’s main job is to use the film slate, also known as a clapperboard, to make sure that all of the different takes are easily known and accessible to the editors in post-production. Working on a live film set was a very fast-paced experience where one small misstep can cause a major delay in the production. Learning the inner workings of a real-life film set was extremely fascinating to me and I am very excited to have had that amazing opportunity over this past spring and summer.
During two recent summers, you participated in the Educational Service District 112’s pre-employment transition program called Youth Employment Services (YES). What did you learn during your experience?
During the summers after my sophomore and junior years of high school, I had the amazing opportunity to participate in the YES program sponsored by ESD 112. During my first summer, I had a two-week long work readiness training class which taught various ways to build resumes for jobs,
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participate in mock interviews, learn financial literacy skills, and even learn how public transportation works.
After this class was over, I got to have a paid internship at the Vancouver Parks and Recreation helping to set up and tear down weekly summer movies held in parks across the city. We had a massive inflatable projector screen which was used to show movies to hundreds of members of the public throughout the summer, and we also had outdoor games such as cornhole available to play before each movie began.
During the summer after my junior year, I jumped right into another internship since I had already completed the work readiness class. The internship I chose was to work in a more typical office environment with ESD-U, a hybrid teacher certification program, where I proctored Zoom classes where candidates would take classes to earn a certificate in four different areas, though the main one I proctored for was Special Education.
While I may have been proctoring the classes by helping with the technical end of the programs used by ESD-U, such as Zoom, Google Sheets, and Canvas, I also wanted to leave a good impression on the candidates. I shared some of my first-hand experiences going through special education programs and gave the candidates a deeper understanding of the subject, while also helping the teachers with the technical stuff.
I also have to give a shoutout to all of the coworkers I had during the summer I was there, who were all amazing. Overall, the YES program is an amazing program for neurodivergent teens who live in Southwest Washington, and I would highly recommend you to check them out if you have any teenagers.
As an incoming freshman at the University of Washington, what are you most excited about in studying Atmospheric Sciences, and how did your passion for weather begin?
I am so excited to study Atmospheric Sciences, and while I won’t end up taking the bulk of the major-related classes
until my junior and senior years, I am really excited to find out more about how the weather around us works.
While I am good at finding historical data and have some sense about the weather patterns in the Pacific Northwest, from the atmospheric rivers to the east wind in the Columbia River Gorge that can bring extreme heat and horrible ice storms, I still have a lot to learn. For example, the thermodynamics behind the weather patterns we see is something I think will be extremely fascinating to me.
In terms of how my passion for weather began, I’m not exactly sure, though watching a lot of The Weather Channel throughout elementary school and middle school definitely helped my passion a lot, with one of my first fascinations being for hurricanes, even though they only happen in places thousands of miles from here.
If I had to take a stab in the dark on where it did begin though, based on historical data, I wouldn’t be surprised if it came up around the time we had a snowstorm in February 2014, when I was 8, which dropped 7.3 inches of snow in Portland, and the week following that snowstorm, my family went to Disneyland, with an obviously very different climate to the snow that had just occurred, and I was probably very fascinated with how that all worked, but that’s pretty much just a guess based on historical weather data.
What do you hope to achieve in your college years, both academically and personally?
My main academic goal is to get a Bachelor of Science in Atmospheric Sciences with a focus on Meteorology. Personally, I want to be able to make more friends in and out of the field and make industry connections. I am also hoping to join different clubs to really get that true college experience, which should also help with making connections to others.
What are your career aspirations in Atmospheric Sciences, and how do you see yourself making a difference in this field?
I am hoping to eventually become a weatherman broadcasting on television. However, since television might be starting to become a dying medium, I might in the future have my sights set on working behind the scenes at companies who forecast the weather, or I may even be on social media providing video updates on weather conditions going on.
What advice would you give to parents of autistic children, particularly those just starting on their journey?
My number one piece of advice would be to forge relationships with your childrens’ teachers, and also encourage your children to do the same.
I’ve stated it before and I’ll state it again—teachers want to see your child succeed, even if they may seem like they don’t want to.
Another piece of advice I have is to encourage your child to follow their passions.
A lot of us neurodivergent people tend to have passions or hyperfixations, with my case being weather and geography, but your child might have something different.
I actually first toured the UW campus when I was in fifth grade, going along with my sister. All the way back then, I told my parents that I wanted to go there. I’m sure at the time, I was pretty naive to assume that being in elementary school, and my parents in their heads were probably thinking something along the lines of “Yeah, right.” But you have to keep the faith and believe in the success of your child, and you never know what might come in the future.
What message do you have for other autistic teens and young adults who are working to achieve their goals?
If you set your sights on a goal, keep on going at it. It may be a tough road ahead, but the light at the end of the tunnel will give you such a sense of satisfaction and being able to work in a job that you love will help you so much emotionally and will help you feel so much better about yourself.
I know I have a tough road ahead for my goals, having to take another two quarters of calculus and three quarters of physics before I can technically be admitted into my major, but I believe that I can do hard things, and that’s where I have my mind set to right now.
What are some of your hobbies and passions outside of your academic interests?
Outside of my academic interests in the weather, I’m pretty well-versed in geography, and I can name around 3,000 cities across the world. I also enjoy playing various video games such as Minecraft, Roblox, and GeoGuessr, which is a geography game where you have to find where in the world you are from random Google Street View images.
You are now 18 and starting young adulthood. What is the biggest challenge you have had to overcome?
The biggest challenge so far that I think I have overcome is getting into my dream college which has the best Atmospheric Sciences program in the country. A lot of things that I have done over the past four years have been done in order to get into college—taking AP classes, joining clubs, and getting straight A’s. Going into the future, my next challenge is to get through college, and while it will be a difficult journey, I am ready to go get my degree.
What do you consider your greatest strength, and how has it helped you along your journey?
I think one of my greatest strengths is being able to advocate for myself when various situations arise.
This is something I used to be horrible at when I was younger, but as I grew older, I realized that being able to advocate for myself is so important. Even just little things like asking teachers for help on questions goes a long way to getting the information you need to be successful.
What are some of your personal goals for the future, both short-term and long-term?
My short-term goal is to be able to get through my freshman year in college. Living on my own over 150 miles away from home is quite a change for me, and it will definitely be a challenge, especially also taking difficult calculus and physics classes at the same time. However, adversity is a fact of life and you can’t make it to the stars without the climb up along the way.
My longer-term goals include getting my dream job of being a weatherman once I graduate from college, which in and of itself is a long-term goal for me. I am optimistic about the future as I continue along life’s long and winding journey.
As you look back on your journey so far, what makes you most proud?
The one thing that makes me most proud is my passion and perseverance. Ever since I was very young, I have been so passionate for the weather, and to see my dreams now closer than ever to being realized, just makes me so proud to know that everything I have done to further myself was not in vain.
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Making it through the lowest lows of middle school and the pandemic to the highest highs of my high school years, I am so fortunate to be able to continue my journey into the future, even if the outlook during my earliest years of life looked so bleak.
What else is important for Spectrum Life Magazine readers to know?
I want every reader, and especially every parent, to know that you don’t get many chances to be blessed with a child, and to please encourage your children, especially younger children, to be curious, and to learn about as many topics as possible, because you never know what that one thing that could light a lifelong spark could be for your child.
Your children’s quirks are what makes them who they are, and even if you may feel like you or your children are on the outside, there are always people out there who want to accept you and your children. While it could take longer than you are hoping for, there’s always light at the end of the tunnel.
I also want to give an extra special shoutout to my parents, who co-founded Autism Empowerment all the way back in 2011, when I was just five years old, as a way for people like me and also for parents in similar situations to my parents to have resources and help out the community.
The work that you both have done for me and encouraging my advocacy throughout my schooling has been paramount to the success and amazing heights that I have reached over the past few years. The contributions you have made to the neurodivergent community throughout the Pacific Northwest and across the world through Spectrum Life Magazine and Zoom Autism Magazine have been just incredible and our planet is truly blessed to have you both making such a big difference to people that you may never even meet through your outreach and writing. Thank you both so much and I am so proud to be your son!
Although Ryan is now away at UW Seattle, if you wish to connect with him you may do so by sending email to ryankrejcha@gmail.com.
Karen “Happy Husky Mom” 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 32 years and is devoted to being a loving wife, mom, daughter and ambassador of acceptance and empowerment worldwide. https://linktr.ee/karenkrejcha
#AskingAutistics Having our Needs Fully Met Creating safe spaces for Autistic individuals
by Lyric Rivera
My name is Lyric Rivera, and I am an Autistic (and ADHD) Neuro-Inclusion Consultant.
Neuro-Inclusion (brain inclusion) is inclusion and accessibility for everyone with a brain.
By embracing NeuroDiversity and Neuro-Inclusion, we aim to create inclusive environments that support and empower individuals of all brain types, promoting equal opportunities for everyone’s participation, support, and well-being (NeuroTypicals too).
One of my primary jobs as a Neuro-Inclusion Consultant is helping organizations make their spaces and policies more inclusive to Autistic and other NeuroDivergent People.
In this work, one of the main things I teach is that thanks to the broad spectrum of experiences of NeuroDivergent People, we must focus on empowering individuals by allowing people the autonomy to modify the spaces and systems around them so that these standardized systems can be adjusted to fit non-standard brains.
NeuroDivergent people’s differences are cognitive, often invisible, and impact how we interpret and engage with the world, process information, emotions, sensory information, and interact and communicate with others. Some NeuroDivergent people also experience neurological differences in how they experience and express movement.
Many forms of NeuroDivergence are lifelong, and many people are born NeuroDivergent, but there are also types of NeuroDivergence that can be acquired through circumstances or events in life.
Additionally, when someone is NeuroDivergent, they are often NeuroDivergent in multiple ways. Many of us have layers to our NeuroDivergence (or multiple NeuroTypes). For example, Autism and ADHD co-occur so frequently that Autistic ADHDers online have coined the term AuDHD to describe the experience of being both Autistic and ADHD at once.
Additionally, because many Autistic People have more than one NeuroType, even two Autistic People will often have very different needs from one another. Sometimes, these needs can even conflict with one another.
Whether someone’s brain differences are ones that they are born with or are acquired later in life, permanent or temporary, the more layers they have, the further they diverge from what is considered “average” and the more
support they will need to thrive in systems that were designed by and for the NeuroTypical “norm”.
NeuroDiversity is all about understanding, humanizing, empowering, and accepting the natural differences between human brains, whether it’s the differences we’re born with (like Autism, ADHD, & dyslexia) or differences we develop in life (such as PTSD, anxiety, and other mental health conditions).
What DOES a safe space for Autistic People look like?
A safe space is not just a physical location but a psychological and emotional sanctuary where individuals can feel comfortable, supported, and accepted for who we are.
For Autistic and other NeuroDivergent People, a safe space can be:
• A community where we can connect with others who share similar experiences.
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• An environment where we can be and express ourselves openly and authentically (including our needs and opinions) without fear of judgment or criticism or being forced to conform to societal norms.
• A place where our neurological differences are recognized and supported, where we can communicate our needs and have those needs met (and respected).
• A space where we can take breaks and recharge without feeling guilty or ashamed.
NOTE: It’s essential to recognize that just because a space is safe for one Autistic Person, it may not necessarily be safe for EVERY Autistic Person (because we all have different needs, desires, and beliefs that can sometimes conflict or oppose one another).
Some may need a quiet, sensory-free environment, while others thrive in a busy, stimulating space. Some may need frequent check-ins and support, while others may prefer independence.
There are ways to include various needs in one space, but sometimes, it is wise for incompatible groups not to force things.
While very few solutions are one-size-fits-all for empowering and supporting Autistic and other NeuroDivergent People, one element universally needed when creating safe spaces for NeuroDivergent (and all people) is emotional safety.
Empowerment and emotional safety (in addition to physical safety) are essential components for Autistic People to experience safety within the spaces we enter.
Psychological and emotional safety enables members of a space (regardless of brain type) to collaborate freely, share bold and creative ideas, speak openly about their needs and desires, and express themselves freely with one another.
When people feel a sense of emotional safety, they trust one another and feel safe enough to show up authentically in the spaces they enter.
Autistic People who experience emotional safety may feel less pressure to camouflage, blend in, censor themselves, or leave parts of themselves behind.
There are numerous levels of safety (or lack thereof) that Autistic People might feel within a space. Ideally, people should feel safe enough to speak up about their needs and ask for help, using authentic communication, trusting that doing so will not negatively impact how others within the group treat or perceive them.
For most of my life, I felt little to no emotional safety (and even lacked physical safety at times when my NeuroDivergence rubbed people the wrong way) because the ways I moved, thought, and communicated seemed to annoy people.
Since my Autistic diagnosis, I’ve begun to embrace and be truer to my unique communication style, allowing me to express myself more authentically.
Authentic communication allows us to leverage our strengths while accommodating our communication challenges.
When Autistic People can communicate in a natural way, we are more likely to feel valued. We also will be less stressed and tired (if we don’t have to communicate using means poorly suited to our skills and needs).
Additionally, when Autistic people can more freely express ourselves authentically, it leads to increased satisfaction in the relationships and spaces we enter because we feel more accepted and can let our guard down – IF our allies accept our genuine communication.
When we design and create spaces that favor the majority, it leaves those of us who have less common needs excluded. This is just one way the failure of society to recognize the vast diversity of experiences that humans have harms ALL of us.
Biases towards Autistic and other NeuroDivergent People, such as assumptions of incompetence, lack of intelligence, or decreased reliability, create obstacles to this authentic communication, preventing us from getting our needs met by perpetuating harmful stereotypes and limiting opportunities for inclusion, leading to a lack of understanding and empathy, resulting in environments that are not supportive or welcoming (perpetuating our exclusion and harm).
Allies can help by creating a safe and non-judgmental space for both people who have known they are Autistic for years and people who have only recently discovered they are Autistic (who may have very different experiences from one another).
Because Autistic People have a variety of needs, I recently asked:
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 posts like these on Facebook, visit https://www.facebook.com/NeurodivergentRebel)
Sadly, I don’t think we’ll ever truly know.
– Sarah Wisniewski (she/they)
For me, it would mean never having to take phone calls or listen to voicemail. All of that would be transcribed and sent via email where I can respond, preferably also via written message, at my leisure. I would be able to work independently at my own pace and allowed a large degree of autonomy in the arrangement of my workspace and how I get the work done. I would get mandatory alone time breaks on days when I have to interact with a lot of people all at once.
– Ashley Leonard Hubbard
It would be very individualized. – Tiffany Patti (she/her)
We’d get sick less thus live longer, as right now, the National Library of medicine says our life expectancy is around 39 years (which sadly doesn’t shock me with how the world is set up). I personally don’t see myself making it to 50 (I’m not being pessimistic, I wanna keep going, but I’m shutting down that quickly), and I’m already almost 37. – Xian Bo (they/he)
Less burnout. – Anonymous
The ability to say no to an invitation without being asked why not or having a guilt trip laid on you. I just had another ND friend do this to me 2 weeks ago. I don’t think she understood she was doing it but I was very uncomfortable.
– Shannon Haltom (she/her)
I would literally just be employed in any of the fields I’m qualified in and housed adequately for the first time ever but can’t get the supports to function which is ridiculous because I literally can tell you what they are but the providers are also bigots for other reasons. – An Average Hummingbird
It would not look like everyone behaving as is what’s been expected or else, since that doesn’t meet needs, that meets pre-expectations. So it look like people doing whatever we do with our needs fulfilled without anyone being made to behave whatever has been expected. – Scott Wascher (he/they)
Two things that come to mind: being able to work remotely and being able to give feedback without it being perceived as insubordination or questioning authority. Basically, a hell of a lot of people far less traumatized and living in survival mode – Persona Non Greta (they/them)
Speaking being optional in society, society having mastered typed messages to make, cancel and reschedule appointments. For help in understanding legal terms to be free for any government benefits, for the process to receive any assistance to be reworked to not cause trauma and minimize additional stress. Just day to day living is difficult for me. It would be so much better if I had help that wasn’t “just get a device to communicate if you’re not able to speak” but then giving no answers when I ask where I’d get something to do that. Or “just call your insurance for medical transportation” when I ask for help getting to appointments when they know I can’t make a phone call. And these are things said to me from people working in health-related fields. I wish people could actually believe me when I say I’m unable to do something instead of just being brushed off. It would be great if everyone learned skills to keep themselves well for physical and behavioral health throughout all school years. I guess generally if school just taught basic “I need these skills to live” classes, that’d be fantastic too. – Fox Nope (they/them)
I’ve seen a few young ppl from Europe on YouTube that make me think it might be possible – Sabrina Abbott (she/her)
I think a people first instead of profit first mentality. Reasonable working hours, also outside of jobs where you have to be on site to do them (medical staff, grocery store workers, firefighters, etc) remote work should be an option without restrictions (Seriously pretty much almost any office job can be done remotely and so can every meeting I’ve ever had). Schedule flexibility (especially because folks have LIVES and I shouldn’t need to take my PTO to go to the dentist). Medical staff who are compassionate to folks individual needs and collaborate with patients in terms of care. – Anonymous
People would understand that my meltdowns are a medical, bodily, neurological reaction to sensory overload. I wouldn’t have to hide and mask my authentic self. Public businesses and spaces would be fully accessible and safe spaces for us autistic people. That would become the norm, rather than the exception. We would be actually listened to, believed and accommodated in medical settings .... and we’d get medical care when we need it, not just blown off and sent home. – Melissa Fields
Ability to be true self comfortably and feel successful in existence. – Mykayla Spandorf
To join in the conversation, here is the link to the original Facebook post: https://bit.ly/havingneedsmet
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
by
Photography
Jamie Suckow
A Day In the Life of Tanya English Amazing Advocate, Passionate Parent, Social Connector
By Jenny Bristol, Illustrations by Rebecca Burgess
Tanya English is a late-diagnosed autistic Latina parent of three neurodivergent children, and is bilingual and bicultural. She works as Hispanic Outreach Coordinator and Parent Coalition Coordinator at a Vancouver, Washington, nonprofit where she specializes in Autism, Down syndrome, and Intellectual/Developmental Disabilities (I/DD), supporting and advocating for families and individuals to navigate Individualized Education Programs (IEPs) and other educational and societal hurdles and barriers.
Tanya’s road to self-understanding took a few turns along the way, allowing her to hold onto some joys and hard-earned lessons from earlier in her life, and to carve out a place to freely use her talents and be open about who she is and what she needs.
As a part of that, she has worked hard to understand and advocate for her own children, as well as connect with other people as often as she can. She combines her passion and curiosity about people with the lessons she has learned about neurodivergence to help other families.
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 non-workday day look like?
I wish days would stay typical—right now, it’s not so much, because my children are on summer break, which makes things a little unpredictable at times. When school is back in session, my days do tend to look more typical, so I will use that as an example. I get ready, take the children to school. Our work went remote after the pandemic, which I love but sometimes not so much, so I either head to work at the office or work from home.
Sometimes I go to my local library. I love working there, I get to people-watch and get so much done. Sometimes I meet with families there as well. I am also a full-time student so after work I get to do schoolwork if my brain capacity allows it. I wind down the day by hanging out with my kids and then get to do it all over again the next day.
What hobbies or interests do you have outside of your work?
I think people don’t believe me, but I love cleaning while listening to music or audiobooks. I think this is where my Chicana comes out—growing up we cleaned on the weekends and listened to music, so it feels natural to me. It makes sense because I am moving big muscles and stimming freely. This also allows me to listen to things that interest me. Currently I am listening to [the books] Far from the Tree by Andrew Solomon and What My Bones Know by Stephanie Foo. I also like refinishing furniture.
How does being autistic help or hinder your work or hobbies?
I think it has helped my hobbies because I learned how to use music and physical labor as a tool to calm myself down. I like being alone and introspective, and my hobbies (like the furniture finishing) help me do that. It also gives me a sense of control when I feel like I have none.
When it comes to work, it has done both help and hinder. I am great at pattern recognition, thinking creatively to solve problems, and understanding how things might make people feel based on past experiences. I am not afraid to try new things or collaborate with others.
All of this, though, comes at a price. This requires high levels of masking and, in the past, I had such a desire to make everyone happy that I would overcommit to things only to crash and burn. I later learned that this is what is called Autistic Meltdown. I am currently working on learning to fight the urge to say yes to everything. I am not there yet, but I am working on it.
What kinds of changes or accommodations do you make in your life to allow you to be successful?
Learning to say no. I still want to do everything and, if it is something I am interested in and enjoy, I have a difficult time not taking it on, however I am learning to say no to things I know I will not do wholeheartedly. I also have been more vocal about my need for certain accommodations.
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People don’t know what they don’t know, and I know that often people jump to conclusions about others and think they do things to be rude. When I express my needs, I hope that people hear me and understand that I am not being rude, and, if they still think that, at least I stated my case. I also like to think that it’s a way to plant seeds so that perhaps in the future they aren’t quick to jump to conclusions with others.
I am lucky that, so far, when I request accommodations or explain my need to remove myself from overstimulating environments or look straight ahead and not make eye contact because I need a break from that, people have been kind and accommodating.
Have you ever experienced discrimination or bullying because of your autism or autistic traits?
All my life, and it started at home. There were certain things about me that my parents did not understand, and of course I didn’t either. For example, when I was younger, I struggled with ARFID (avoidant/restrictive food intake disorder). They didn’t have a concept of it, and many people still don’t. They saw it as “picky eating” and it was a major cause of shame and punishment.
I also grew up in Mexico, and in my culture, you don’t question your parents or authority, you show respect, and this was sometimes difficult for me because I was always asking questions, and some people see that as disrespectful.
What advice would you give to a young or teenage autistic person to help them live their best life, and/or what advice would you give an autistic adult to help them feel supported in their continuing journey?
If someone makes you feel bad, you don’t have to suffer trying to gain their approval. Find community and make that your family. The right people will love you just as you are.
It took me a long time, but I have a community of people that I don’t have to mask around—those are my people. I don’t have a best friend because I realize that having that title is a lot of pressure on one single person. Instead, I have people I go to that are awesome for different things and that is beautiful.
What advice would you give parents of autistic kids about the best ways to support their kids in becoming their best selves? What advice from the so-called “experts” do you think parents should ignore?
I love this question. I recently went back to school and studied Early Childhood Education because I have a soft spot for children and parents of young children.
The one advice I always give parents is, “Your family doesn’t have to look like anyone’s family.”
When my children were little, no one prepared me for how lonely and shameful it felt when you realize you can’t do what others do. You go on social media, and you see people taking fancy vacations knowing that you can’t afford that, you see people going to restaurants with their children knowing that your child will have a meltdown, and everyone will stare.
You want to have family dinner at the table because “these are the things families are supposed to do,” except your experiences are stressful and frustrating and make you want to cry. That was my experience.
I developed severe long-term depression because of this. It wasn’t until about three years ago that I realized, “We don’t have to.” We don’t have to spend money on vacations where everyone is miserable because we all have different triggers, the dinner table doesn’t have to be where we connect because we all hate small talk, we don’t have to do what others do, and that was so freeing.
We do what works for us and that is ok. That is more than ok, that is ideal for us! So, my biggest advice for families is to let go of those expectations that you didn’t ask for.
Without that pressure, you are free to then look for what will work for your family and your children, and you will be much happier. You are the expert on your own children. The “experts” are experts in their field but not on your children. They are there to give you tools but how you hold the tools is up to you.
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What was one piece of advice you received that helped you be comfortable with who you are?
When I was in my 20s going to fashion school, one of my advisors, seeing that I struggled with anxiety, gave me a laminated card that said: “You can’t control what you can’t control.” At the time it made me really angry, who did he think he was, calling me controlling? (Which I admit now I was.)
It took me 20 years to actually process and understand what he meant. I can’t control what is out of my control, whether it is people, situations, systems, etc. What I can control is myself—I control my reactions and my interactions and my participation.
Does this mean I don’t try at times? Of course, I try. That’s the thing that comes with the territory of being who I am—I like control. It’s predictable that way, but, when I find I can’t control something, I remind myself that I am in charge of me and that has helped ground me and feel comfortable.
If you could go back in time, what would you tell your younger, undiagnosed self?
Don’t drink. It’s important to me that I add this piece of my story here. At the age of 15, I discovered alcohol, and drinking made interacting with the world feel easier. In 2021, four months after I lost my mom, I decided to quit drinking after struggling for more than half my life with alcoholism. I realized in sobriety that I had spent my life undiagnosed, and that alcohol served as a huge Band-Aid for it.
I wonder how many undiagnosed adults also have used
alcohol as a way to mask or cope? If I could go back in time, I would maybe stop myself from even trying alcohol. Though the way it is everywhere in society, that seems like a difficult task.
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, getting into a flow state?
Helping others, solving problems, connecting people to each other gives me energy. I love meeting people and learning new things. There’s a children’s book called Hello World! by Kelly Corrigan. The book is about meeting people and asking them questions about themselves. The book basically describes me.
I like asking people questions and learning about their perspectives. Or, as I say it in Spanish, “Soy una metiche” (I stick my nose into everything). I just love learning. At the same time, though, people drain me, so I have to be careful to give myself time to be introspective.
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?
That we are all different in our strengths and struggles. It has only been recently that I have been open about being autistic and people look at me puzzled and tell me things like, “...but you don’t seem like it.”
I think they are working through their assumption that I must not struggle, and I do, I internalize so much of it and that is also one of the many layers that caused my alcoholism. My struggle may be different, but I still struggle, and I think this is true for any human being.
What are some ways you’ve observed schools being neuroaffirming with autistic kids? What are some areas in which they could improve? How well do you feel the school systems are equipped and empowered to support autistic students in neuroaffirming ways (as opposed to compliance tactics)?
This is a very layered question. I want to preface my answer by saying that people’s experiences with the school system are going to be vastly different and my observations and experiences are unique to my perspective and my life filters, and I don’t ever want to say something that may make someone feel invalidated in their experience as a parent, as a student, or as a teacher.
I will say this. My wish is that, as society grows aware of the different needs of students, beyond academic needs, they will move into a system that includes individualized education for all. We are all different, we all have strengths, each and every one of us. My dream is that everyone gets the level of support
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that they need and, for that to happen, we have to start getting creative and listen to students and listen to their families and fund education so that they can provide these supports. It’s a big dream but I am an optimist, and I hope we will get there.
How has being an autistic adult with your own lived experience helped you advocate for autistic kids, LGBTQ+ kids, and those with I/DD or mental health diagnoses in educational, medical, and community systems? How has your and others’ intersectionality come into play?
This is my whole life, even before I knew I was autistic. The moment my middle child got diagnosed 10 years ago, all of this became my world. I didn’t know at the time but my advocacy for her came from a place of understanding how things might make her feel, and it’s because I too have felt them, I just didn’t recognize it at the time.
When it comes to children, I get them! I get the feeling of not being in control, I get the feeling of wanting to stand up for yourself and not being allowed to, I get the feeling of being so into something and being forced to do something else.
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Photos courtesy of Tanya English
When I advocate for children, when I advocate for families, when I advocate for the LGBTQ+ kids, including my own son, I do it from a place of, “I understand feeling powerless,” and I will do whatever I can, so you don’t have to feel that way.
When I came back to this country, I was alone, I had to rely on families who would let me stay in their homes for bits at a time, I was homeless. This experience also has helped me tap into that sense of justice with families. I understand feeling overwhelmed and scared and feeling like you’re relying on someone to be kind to you. All of this, though, has made me who I am and given me the drive to help others. That strong sense of justice.
What types of resistance do you sometimes come up against with parents, who possibly don’t understand what it’s like to be autistic, or are perhaps unidentified autistic people themselves?
I have encountered parents who need time to process or who are maybe thinking if they deny it long enough it will go away, but my approach is to support them and plant seeds. My experience is that eventually they come around, especially if they see someone like me being outspoken about their experiences. This is why I am an open book—if my experiences can shine a light so someone else can find their path, I will gladly share.
How does being a parent to neurodivergent children yourself help you advocate for other children with specific needs?
When my first child that got a diagnosis was about 18 months, I knew she needed some help. I just knew but I was ignored by her pediatrician. When she turned 3, she finally gave me a referral to our local Regional Center (California system), and I don’t know if I just didn’t ask in “just the right way,” but they didn’t help.
It was another mom who gave me the resources I needed to get my child what she needed. After that I think you sort of just get inducted into this unofficial club of moms that help other moms when needed. The more I have learned, the more I am able to help more moms. If I won the lottery tomorrow and became a millionaire, I’d still be helping.
Is there anything else you’d like to share?
I live in an intersectionality of being Latina, being autistic, being a mom to three neurodivergent children and building a sober life. I have gotten to a point where I am grateful that all of this makes me who I am because I am no longer trying to be anyone else except me.
If there is anything I want people who are reading to take away from this, it is that there is value and beauty and power in each and every one of us and in our experiences.
Maybe things don’t happen for a reason, maybe the point of it all is for us to find that power to give our experiences purpose and reason because that is how we light the way for others. I say this because when you get a late diagnosis, there is often grief with the “what could have been” had we gotten support early on, and that is ok to grieve but it is also ok to make your story yours and choose your own adventure.
What are the best ways for people to connect with you?
Email: tanya.english11@gmail.com
LinkedIn or Facebook: Tanya English
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
Illustrations by
Rebecca Burgess
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Navigating Grief and Growth A personal experience on loss and learning
By Niko Boskovic
In my short life so far, I’ve had minimal experience with someone dying. This doesn’t mean I wasn’t exposed to the concept or that I shouldn’t talk about such things. My Serbian grandfather died when I was in the early days of my home program, and while I remembered him from our visits, clearly I was too little to be much of a participant in a funeral (and these rituals are performed within a day or two according to Serbian custom and practicality).
The concept of death does resonate for me. Part of it means coming to terms with the permanent absence of another person: the way little things remind you of a person, like a scent or the taste of a certain food. The way you might look at a coat rack and see their jacket still hanging; or entering the house and expecting to hear their feet shuffling to greet you. These reminders are artifacts of life, memories that can be lovely to bear.
The other part is coming to understand what that person meant to you in all life’s layers: how they may have contributed to your belief system over the years. How their nose and face are looking at you while you brush your teeth every night. How they paid for things that might help you. How their love showed up in the world.
There was much to contemplate when I attended my grandmother’s funeral in April. My mother wanted me to go so that I could experience what a funeral was like under her support while being there as her support person. She told me that I would be a comfort because she’d been so sad about her mother’s death. That was enough for me; I was glad to go.
This was a far cry from the way I was treated as a child. At that time, my Applied Behavioral Analysis (ABA) program was teaching me tricks to comply with adults in exchange for getting a prized stim toy back. Stimming was the only way I could find relief in a world that confused me at every turn.
I had a terrible time paying attention because something I’d see would distract me positively and draw me in with its pattern-making. Other times, I’d get irritated by a flickering light or buzzing electrical outlet and have to retreat inwards to get a break.
I think it took a few years before we stopped doing table work, but when we did, I was so relieved. There is something about having the freedom to get up and move that makes it easier to listen and process, but at that time it was all about being compliant.
There was an undercurrent of how I was expected to behave. Even when I was little, I knew my behaviors were hard to understand and that I should control them all the time around other people.
Most of the time, information was being given to me dumbed down because no one knew how smart I was.
There were many times when I would get so frustrated by the lack of stimulating material that I would retreat inside my head and think about other things. Of course, I probably looked like I was out of it, and that unfortunately contributed to the cycle of being underestimated.
The thing is, it wasn’t on me to fix the environment around me—the adults were the decision-makers and the only ones who could change these conditions. So I did what I could to self-regulate. Sometimes, I thought this frustration would last forever, and there were times I was melting down from feeling totally disempowered.
My learning disability was a result of not being able to speak combined with ableism and discrimination. It was only when I learned to letterboard that I got to feel like I was finally learning at a level right for me. The material became fascinating because it was finally age-appropriate and followed a curriculum.
There was (and still is) a lagging compliance in enforcing the Americans with Disabilities Act (ADA) that affects everyone, not only people living with disabled family members. Much like curb cuts and ramps assist disabled and non-disabled people alike, understanding the ways young people’s brains learn best and implementing strategies that play to their strengths will be favorably received by all types of learners.
This learning is applicable to adults too in that there’s an impetus to place responsibility for behaviors only on the shoulders of the autistic person. The reality is that behaviors are usually a response to something in the environment which, if altered or removed, would also remove the behavior.
A parent might wonder how their kid does so well in one setting but not in another! So staying curious and exploring what other disabled people share may help you find information that resonates with your child.
When my home program became fun—something I liked doing—it was directly a result of my parents listening to self-advocates who expressed what I knew to be my truth. I just hadn’t been able to put it into my own words. (And because of that, my mental state was not great either). The biggest impact on my learning style has been learning to letterboard.
Being diagnosed with a learning disability has meant that I’m treated like I can’t learn. What I mean is that being autistic and nonspeaking is equated with being unintelligent or intellectually disabled since it is usually seen as a sign of ultimate dependency.
Thanks to our country’s long history of treating disability as a disease or personal defect, there is still a lot of work that is needed to ensure that disabled people are adequately represented. When we continuously expect people with disabilities to be measured by nondisabled standards, it’s no wonder society’s impressions of disability continue to be paternalistic and infantilizing.
There should be more efforts to find a way to communicate for every nonspeaker who doesn’t respond to the tried-and-true apps and picture-based methods. This is how we will continue to improve society.
I can’t imagine my life without being able to point to letters on a board. I know each word’s worth because I have learned to control my body to be able to do it.
It was possible only because my parents listened to other autistic people and changed the environment around me so that I made more and more decisions about my life.
This has resulted in where we are today, a unit that sees the strengths in each other, fills in support where possible, and continues to be curious about what makes a person think and experience the world the way they do.
In other words, we are collecting all those ways a person affects us. In the end, that’s all any of us will be able to keep close to our hearts when that other person is gone.
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
Photos courtesy of Loreta Skucas
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The Power of Poetry Niko Boskovic’s discovery of self-expression and advocacy.
By Niko Boskovic
From the first time I was able to walk, my biggest desire was to get my hands on this green book that really drew my attention. It was a children’s book that had this wonderful drawing of a bear on the cover, and I thought it was magnificent. I thought the bear was funny and cute, and best of all, the story inside was a poem about that bear, which my mother would read to me at night. I really loved this book, both physically and emotionally, for the reactions it gave me.
Many books have been read to me over the last few years, and they always remind me of my first days of reading. I think there is something about listening to a story that frees the imagination. That allows you to alter minor details as you imagine them, and if you do this enough times, it starts to carry over into other areas.
My interest in poetry probably started when I was a baby and my parents would read to me. They each read in their respective languages (my mother in Lithuanian, and my father in Serbian), while they spoke English between them.
It was not confusing at all; instead, it was a lullaby of sounds and cultural clues of what my life was going to look like. There were so many different tales that were read to me which fed my wild imagination.
Really, though, the primary factor that made poetry so accessible for me was being autistic. When I was little and stuck in my head as a way of coping with sensory overwhelm, it was only by going deep and focusing on something specific that I was able to find relief.
For example, I could find so many interesting things to look at when I was drizzling sand in front of my eyes over and over. I learned I could adjust the way the sand fell by subtle manipulations of how I held my hand, and once I got good at doing it one way, I’d switch it up. I could do it for hours and not be bored. This was my way of finding patterns to explain my environment and control it. It was such a calming experience and remarkably relaxing to watch, like a lava lamp or a roaring fire.
Because I was nonspeaking, that internal activity was impossible to put into words, so it sat in my thoughts and became a feeling. Over time, more experiences added to that feeling and became a way I understood my environment.
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Once I learned how to letterboard, it still took me a year and a half to write my first poem. In my sophomore English class, the teacher led a great session on poetry, and I fell in love with Edgar Allen Poe’s poetry. To me, his work seemed deliciously fun and gorey-lite, with lots of room for imaginations to fill in all the details, and I fully appreciated how Poe also used unusual pairings of characteristics in his short stories.
The teacher had us write our first poems as homework, and as soon as I put thoughts down on paper, I realized poetry’s ability to put those deeply felt emotions into a few sentences.
I love the feeling when I am working on a poem, and it’s all there in my head, waiting to get down on paper, and the person (usually my mother) doesn’t have any idea what I’m writing about. Sometimes, when we’ve been sitting at the desk for a long while, she gets lost in the letters. So, when it’s all finished, and we’ve both had a chance to step away from spelling for a while, often she will read it in its intended form for the first time, and then give me her reaction.
Poetry has been one of the most powerful ways I advocate for myself. It corrects that tired stereotype that being nonspeaking equals being unintelligent, that people like me are monstrous burdens on their families, that we are too disabled to see beauty where you do not.
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
Welcome to Spectrum Life Magazine's Fall 2024 Reader Survey and Contest.
Your answers help us learn more about our readers and what kind of articles, resources and support you’d like to see in the future.
Answer our survey by November 30th, 2024 and you will be entered to win an Autism Empowerment surprise package worth over $50. Ten winners will be drawn!
If you win, we will contact you via email and mail your prize package to you.
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Photos courtesy of Loreta Skucas
Ancestral Ink on Paper Can’t Sway Angry Minds But Watch What My First Delight May Reap
We’ve been reading a lot this summer books about disabled folks in the Antebellum years books about prostheses and how war is a driver of patients and innovation essays about intimacy between crips and others story after story of heartachingly real pain at being the only disabled person in the room.
Perhaps with good luck you find someone who is not intimidated by how you show up in the world by your pointing to share a thought give me time and I swear I’ll make it up to you we’ll point and flap turn the music up to listen to how it makes us feel walk the shore together to bring in the tide let wind and waves make it impossible to hear anything else.
Ours will be a diary not a book filled with pressed leaves and twigs that got caught in my hair sounds of jet engines curtained with exotic smells inside every page thoughts of those silenced voices about whose histories we’ve read imagining their lives forgotten by nearly everyone but those of us lucky enough to learn.
By Niko Boskovic
Ask Spectrum Life: Neurodivergent Resources for our Community ADHD,
Epilepsy, Learning Disabilities, Disability Employment and more
In this issue, Autism Empowerment co-founders Karen Krejcha and John Krejcha share insight and resources regarding various disability-related awareness months taking place this fall.
Dear Spectrum Life Readers:
One year ago, in our Fall 2023 Ask Spectrum Life column, we answered a question from a parent whose child was recently diagnosed on the autism spectrum. They were interested in learning more about various forms of neurodivergence and learning disabilities.
Since it was also National Learning Disabilities Awareness Month, we thought it a great time to share definitions and resources for common forms of neurodivergence that either intersect with an autism diagnosis or appear on their own.
The forms of neurodivergence we shared definitions and resources for include:
• Attention-Deficit/Hyperactivity Disorder (ADHD)
• Auditory Processing Disorder (APD)
• Dyscalculia
• Dysgraphia
• Dyslexia
• Executive Function Disorder
• Non-Verbal Learning Disability (NVLD)
• Sensory Processing Disorder (SPD)
• Visual Processing Disorder (VPD)
We also addressed:
• Augmentative and Alternative Communication (AAC)
• Giftedness and Twice-Exceptionality
• Differences between Neurodiversity and Neurodivergence
Here is a link to that article in case you missed it or would like a refresher: https://bit.ly/fall2023awareness
Many readers shared with us afterward that this article was very helpful for themselves and their families. In many cases, people were able to find out a name for something they or their children had been experiencing all their lives. It helped them feel more seen and heard, accepted and included.
This was appreciated feedback. We also heard from readers who wanted to know more about other intersecting conditions, such as Pathological Demand Avoidance (PDA), Echolalia, and Avoidant/Restrictive Food Disorder (ARFID), so we committed to writing about those issues in our Winter
2023 issue (PDA, page 52), Summer 2024 issue (Echolalia, page 49) and Fall 2024 issue (ARFID, page 52).
All this educational content, in addition to everything else we write about, is available for readers to access for free at www.SpectrumLife.org. We have over eight years of curated educational content available on our website, thanks to the columnists and guest writers we collaborate with, many of whom are autistic or neurodivergent.
As October happens to be the official month for a variety of Awareness Month campaigns that impact members of the Autism Empowerment community, we thought we’d take the rest of this article to highlight and share resources for some of the different topics and campaigns that we believe can offer valuable information and community connections for our readers.
Before continuing, we do want to admit that a lot of times “Awareness Month” campaigns receive mixed feedback, particularly Autism Awareness. Making the public more “aware” of a health condition or particular issue can be affirming for those living with the condition. It can be educational for those who may not understand the condition.
For areas where advocacy is needed, awareness campaigns can also be an important step in creating an environment where social change is possible.
However, when done negatively or ineffectively, an awareness campaign also brings negative risk. It might cause division within the intended audience or may reach the wrong audience. It might create additional backlash, bullying, and harm. It might lead to no action or advocacy on behalf of a people that is either inappropriate or does not include the voice of those people.
When we care about an issue or a cause, it’s natural to want others to care as much as we do. However, all the awareness in the world doesn’t mean much if it doesn’t inspire some sense of action and help promote long-lasting change.
Within autism communities and nonprofit organizations like Autism Empowerment, autistic advocates and our non-autistic allies often call for Autism Acceptance,
Continued on page 36
Autistic Acceptance, and positive actions that will support each one of us, no matter our age, race, ethnicity, gender, sexuality, socioeconomic or ability level, to have the supports, accommodations, and resources in place to live our best possible lives. Let’s be celebrated for what makes us unique and give support for what challenges us.
With that in mind, here are some of the Awareness Month Campaigns taking place in October and November, with links to websites that share more information.
Please note that this is not an exhaustive list, and as space is limited in our print edition, we have chosen to include three national resources for each Awareness Month listed.
ADHD Awareness Month (October)
ADHD Awareness Month is dedicated to increasing understanding about Attention-Deficit/Hyperactivity Disorder, which affects both children and adults. ADHD is a neurodevelopmental condition marked by persistent patterns of inattention, hyperactivity, and impulsivity that interfere with daily life.
Resources:
• CHADD (Children and Adults with Attention-Deficit/ Hyperactivity Disorder): A national resource center offering support, education, and advocacy for ADHD. https://chadd.org
• ADHD Awareness Month: Provides educational materials and tools to help raise awareness. https://adhdawarenessmonth.org
• ADDitude Magazine: A trusted source offering advice, strategies, and tools for managing ADHD. https://www.additudemag.com
Bullying Prevention Month (October)
Bullying Prevention Month aims to educate communities about the impact of bullying on students and adults of all ages. Bullying can cause significant emotional, psychological, and sometimes physical harm, particularly to individuals with disabilities or neurodivergence, who are often more vulnerable.
Resources:
• PACER’s National Bullying Prevention Center: An organization that provides bullying prevention resources, particularly for students with disabilities. https://www.pacer.org/bullying
homophobia, LGBTQ+ discrimination, racism and hatred, and deters violence in schools, online, and in communities across the country. https://www.stompoutbullying.org
Depression Awareness Month (October)
Depression Awareness Month is a time to educate the public about the symptoms of depression, a common but serious mood disorder. Depression can affect anyone, regardless of age, and often coexists with other mental health conditions like anxiety and ADHD.
Resources:
• National Institute of Mental Health (NIMH): Offers comprehensive information aboutthe symptoms, causes, and treatments for depression. https://www.nimh.nih.gov
• Depression and Bipolar Support Alliance (DBSA): Provides support and resources for individuals dealing with depression and bipolar disorder. https://www.dbsalliance.org
• Mental Health America (MHA): A nonprofit dedicated to addressing the needs of those living with mental illness. https://www.mhanational.org
Down Syndrome Awareness Month (October)
Down Syndrome Awareness Month seeks to raise awareness and promote inclusion for individuals with Down syndrome, a genetic condition caused by the presence of an extra chromosome 21. The goal is to highlight the abilities and achievements of people with Down syndrome, emphasizing that they can live full and rewarding lives.
Resources:
• National Down Syndrome Society (NDSS): A leading advocacy organization for individuals with Down syndrome, offering education and community resources. https://www.ndss.org
• Global Down Syndrome Foundation: Provides research, advocacy, and educational resources for families and professionals. https://www.globaldownsyndrome.org
• Down Syndrome International: A global network that promotes equal rights for people with Down syndrome. https://www.ds-int.org
Epilepsy Awareness Month (November)
• StopBullying.gov: A federal government website offering resources to prevent bullying in schools and communities. https://www.stopbullying.gov
• STOMP Out Bullying: STOMP Out Bullying is a national nonprofit that works to reduce and prevent bullying, cyberbullying, and other digital abuse, educates against
Epilepsy Awareness Month is dedicated to increasing public understanding and support for those living with epilepsy, a neurological disorder characterized by recurring seizures.
These seizures result from abnormal electrical activity in the brain and can affect people of all ages. Raising awareness is crucial to breaking the stigma surrounding epilepsy and promoting better healthcare, research, and seizure safety.
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Resources:
• Epilepsy Foundation: Offers comprehensive information, education, and support services for individuals with epilepsy and their families. https://www.epilepsy.com
• Citizens United for Research in Epilepsy (CURE): Dedicated to funding research to find a cure for epilepsy and providing educational resources. https://www.cureepilepsy.org
• Danny Did Foundation: Focuses on epilepsy awareness, seizure safety, and Sudden Unexpected Death in Epilepsy (SUDEP). https://www.dannydid.org
Learning Disabilities Awareness Month (October)
Learning Disabilities Awareness Month focuses on increasing public understanding of learning disabilities, such as dyslexia, dyscalculia, and dysgraphia. These are lifelong conditions that can impact a person’s ability to read, write, and process information, but with proper support, individuals with learning disabilities can succeed academically and professionally.
Resources:
• Learning Disabilities Association of America (LDA): Offers resources for individuals with learning disabilities, their families, and educators. https://ldaamerica.org
• National Center for Learning Disabilities (NCLD): Advocates for improved policies and programs for students with learning disabilities. https://www.ncld.org
• Understood.org: A comprehensive site providing resources and tools for people with learning and thinking differences. https://www.understood.org
National Disability Employment Awareness Month (October)
National Disability Employment Awareness Month (NDEAM) promotes the inclusion of people with disabilities in the workplace. This observance emphasizes the contributions of employees with disabilities and the importance of removing barriers to employment.
Resources:
• U.S. Department of Labor Office of Disability Employment Policy (ODEP): Provides resources and information about promoting disability employment. #NDEAM https://www.dol.gov/odep/topics/ndeam
• Job Accommodation Network (JAN): Offers free, confidential advice regarding workplace accommodations for people with disabilities. https://askjan.org
• National Organization on Disability (NOD): Advocates for the full participation of individuals with disabilities in all aspects of society, including employment. https://www.nod.org
As you continue to embark on this journey, know that Autism Empowerment and Spectrum Life Magazine are here to provide you with a wealth of resources, stories, and
insights that celebrate who you are and offer guidance and encouragement.
Each of us has gifts, strengths, and a calling to make this world a better place. Together, let’s support creating a kinder world where every individual has the opportunity to thrive!
Thank you for being an Ambassador for Acceptance of All Abilities!
Karen and John
“Fall Festive” 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 32 years and is devoted to being a loving wife, mom, daughter and ambassador of acceptance and empowerment worldwide. https://linktr.ee/karenkrejcha
John “Mr Halloween” 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.
Creating More Equitable Spaces Technology for Equitable Learning Experiences
By Aaron Blackwelder
This article is part four in a four-part educational series on Creating More Equitable Spaces in the classroom and beyond. Read the entire series at www.spectrumlife.org/cems
Technology can be a powerful tool for creating more inclusive and equitable learning environments for students with diverse learning needs. Here are some ways it can help in the classroom, studying at home, and beyond:
Assistive Technology
Assistive technology refers to any item, piece of equipment, or system used to increase, maintain, or improve the functional capabilities of individuals with disabilities. It can help people with various disabilities, including vision, hearing, mobility, cognition, and communication. Assistive technologies range from common items such as glasses and hearing aids to wheelchairs and walkers.
In education, assistive technologies are designed to help students access learning, providing opportunities for more students to engage in classroom settings. Some of these items include screen readers, text-to-speech software, and speech-to-text software.
Screen Readers:
A screen reader is a software application that converts text and other visual information on a computer screen into speech or braille. It’s designed to help people with visual impairments, including blindness and low vision, to access and interact with computers. For students with visual impairments, screen readers can read text aloud.
Where to find: Built into Microsoft Edge, Apple’s Voiceover
Text-to-Speech Software:
Text-to-speech is a technology that converts written text into spoken language. It uses a computer program to analyze the text and generate the corresponding sounds. The synthesized speech can then be played through speakers or headphones.
Text-to-speech software can be an excellent support for students with physical or communication difficulties because speech-to-text software can convert spoken words into text.
Where to find: Built into all Apple products, Microsoft Lens
Speech-to-Text Software:
Speech-to-text software is a technology that converts spoken language into written text. It uses a computer
program to analyze the audio input and transcribe it into text. This technology can be used in various settings, such as dictation, note-taking, and transcription.
Speech-to-text software can help support students with dyslexia, dysgraphia, or other forms of writing impairments. Text-to-speech gives students who struggle with writing a voice.
Where to find: Built into all Apple products, Google Suite, Voice Typing in Windows
Accessibility
Features
Accessibility features are designed to make technology usable by people with disabilities. These features can help people with visual, hearing, motor, cognitive, or other impairments to access and use digital content and applications. Some of the most common accessibility features include closed captioning, color contrast options, and font size options.
Closed Captioning:
For students who are deaf, hard of hearing, or visual learners, closed captioning can provide a visual representation of spoken content. Closed captioning is most commonly seen in videos; however, many presentation tools, such as Google Slides and PowerPoint, have options for closed captioning. Closed captioning can help provide clarity for students who need visual representations of spoken material.
Where to find: Automated in YouTube, Google Slides for Presentations
Color Contrast Options:
Color contrast options refer to the differences in color between text and background elements on a screen. Some of the most common are High Contrast and Dark Mode. These options are designed to improve the readability and accessibility of digital content, especially for students with visual impairments or who are sensitive to specific colors.
Where to find: Built into all devices in Accessibility Tools
Font and Size Options:
Font size options refer to the ability to adjust the size of text on a screen. This feature is essential for students with visual impairments or who need larger text to read more comfortably. Simply allowing students to adjust font size and type can improve readability and provide more students with access to content.
Where to find: Built into all devices in Accessibility Tools
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Personalized Learning
Adaptive Learning Platforms:
Adaptive learning platforms are educational technology tools that personalize the learning experience for each student based on their individual needs, strengths, and weaknesses. These platforms use algorithms and data analytics to track student progress, identify knowledge gaps, and adjust the curriculum accordingly. These platforms can tailor instruction to each student’s pace and learning style.
Where to find: iXL - www.ixl.com, iReady - https://i-readycentral.com
Differentiated Instruction:
Differentiated instruction is a teaching approach that recognizes and responds to the diverse learning styles, needs, and interests of students in the classroom. It involves tailoring instruction to meet the individual needs of each student, rather than using a one-size-fits-all approach.
Though differentiated instruction is more of a strategy than a technology, it can leverage technology by providing a variety of tools and resources to support different learners, such as text-to-speech, graphic organizers, and alternative modes of expression.
Universal Design for Learning (UDL)
Universal Design for Learning (UDL) is a framework that aims to create learning environments that are accessible and engaging for all students, regardless of their abilities or learning styles. It focuses on providing multiple means of representation, expression, and engagement to ensure that all students have equal opportunities to learn
Though UDL is an approach to teaching rather than another technology, it allows students to engage in ways that technology can help enhance the learning experience.
UDL Guidelines: https://udlguidelines.cast.org
Multiple Means of Representation:
Multiple means of representation refers to a means of providing information in various ways to accommodate different learning styles and sensory needs. This principle ensures that all students have equal opportunities to access and understand the content.
Technology can provide a variety of ways to present information, such as utilizing text, audio, and visual formats.
Multiple Means of Engagement:
Multiple means of engagement attempts to create a learning environment that is motivating and interesting for all students, regardless of their abilities or interests. This principle ensures that all students have equal opportunities to participate in and engage with the learning process.
Ways teachers can provide multiple means of engagement include choice, authentic learning experiences, autonomy, and game-based learning. Technology can offer interactive activities and games to engage students with different learning styles.
Multiple Means of Expression:
Multiple means of expression provides students with multiple ways to demonstrate their understanding and knowledge. This principle ensures that all students have equal opportunities to express their learning and be assessed.
Multiple means of expression allow students to choose a medium to communicate their understanding of content. Instead of writing an essay, students can tell a story, create a presentation, develop an advertising campaign, or produce a podcast.
Rather than take a test, students can hold a Socratic seminar, create an alphabet book, or create a video game where they include important concepts. Technology can provide students with a variety of ways to demonstrate their understanding in novel and engaging ways.
Leveraging Technology to Benefit All Students
By leveraging technology effectively, educators can create more inclusive and equitable learning environments that support the diverse needs of all students. Through the use of assistive technologies, adaptive learning platforms, and universal design for learning principles, teachers can provide personalized instruction, differentiated content, and multiple means of engagement to meet the unique needs of each learner.
Technology can also help to break down barriers to learning and create a more equitable and inclusive classroom where all students feel valued and supported. As technology continues to evolve, educators must stay informed and adapt their teaching practices to ensure that all students have the opportunity to succeed.
Aaron Blackwelder is a middle school English teacher in the Vancouver Public School District and coaches high school golf in Southwest Washington. He is the co-founder of Teachers Going Gradeless, and an educational contributor to Spectrum Life Magazine. Aaron has been a Washington State English Teachers Fellow, was nominated for Washington State Teacher of the Year in 2019, and is a five-time golf coach of the year. Aaron is a husband and father of two boys on the autism spectrum, who inspire him to become a teacher who meets the needs of all students.
Four Special Education Takeaways for Parents Practice
By Diane Wiscarson and Mackenzie Rawlings
Over the past several decades, we have assisted numerous parents in understanding and navigating their rights to a Free Appropriate Public Education (FAPE) for their children with disabilities and special educational needs.
Our respective experiences as an attorney for more than 25 years (Diane) and as a former public school teacher for more than five years (Mackenzie) inform our reflections on what positive and helpful parent involvement with schools actually looks like and how it can impact relationships with school staff.
If there is only one piece of advice we could offer to parents, it would be to remain as involved as possible in every aspect of their child’s education.
Proactive Involvement
This involvement can range from support within the school to support at home. Whatever can be done, being present is crucial.
We have broken down our advice on involvement into four key areas: advocacy for your child, using data to drive the Individualized Education Program (IEP), communication, and interactions with teachers.
Advocacy for Your Child
When advocating for your child with the school’s special education team, it is important to speak directly with the person(s) responsible for making decisions.
Parents of special education students often direct frustration at their child’s teacher when issues arise at school. However, the child’s teacher is typically not the one making key decisions within the school. The ultimate decision-makers are usually the school’s principal and district special education administrators.
For instance, if a child with an IEP is excluded from a class field trip due to behavior issues, it is unlikely that the teacher made this decision alone. Parents should advocate for their child to attend the field trip but should do so by addressing the person who made the exclusion decision.
Similarly, if a sixth-grade child is moved to a group with younger students for special education classroom time, this decision may not have been made by the teacher but could be a scheduling decision by the principal or district special education administrators.
In summary, teachers generally have limited decision-making power within a school. While it is important to include teachers in conversations about advocacy when appropriate, parents should address issues with those who have the authority to make decisions.
Using Data to Drive the IEP
Data is a critical tool for informing the instruction and support of a child, and it should be central to every IEP change, addition, or removal. When it is time to amend the goals and accommodations included in a child’s IEP, each decision should be supported by data and evidence.
For example, if a feeding protocol is included, what assessments were conducted to determine the need? If there is a behavior plan, what interventions are being used, and how effective are they? If a child does not respond to an intervention, why is it still listed on the IEP or behavior plan?
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Or, consider a nonspeaking autistic child whose IEP states that adaptive physical education (APE) is needed, and all grades and curriculum are modified. If the child’s quarterly report card states that no grade was given due to them being on a modified path, and the IEP lacks data or information justifying the need for APE, it may not reflect their right to receive this support.
Parents should request access to the data used to develop their child’s IEP and be prepared to face potential rejection. While raw data sheets may not be necessary, parents should ask for a summary of the trends to support proposed IEP changes.
Establishing Open Communication with the School Team
Communication with your child’s teacher(s) is crucial for their educational success. Teachers appreciate families who are communicative and involved in their child’s education.
Most teachers have a communication schedule with families to keep them informed about classroom events and other needs. When a teacher reaches out to parents with questions or concerns, they hope to receive a response to facilitate
problem-solving. This home/school communication can significantly impact a child’s success.
Teachers often prefer email and messaging platforms for communication as it allows them to send correspondence after the school day without being tied to lengthy phone conversations or meetings. However, communication with a teacher must have boundaries.
A teacher may have many other children in their class or on their caseload. If each parent sends an email, that can result in a significant amount of correspondence to handle, which could detract from lesson preparation time.
Parents should be mindful of the content, length, and expectations for responses when emailing teachers. If a written message includes multiple paragraphs of context, numerous questions, or urgent matters, it may be better to request a meeting instead.
Interactions with Teachers
The special education teacher can be one of your child’s greatest advocates within the school. Developing a positive relationship with this person is essential, as they can help advocate for your child with other teachers and staff.
While the majority of parents are attentive, involved, and respectful toward school staff, there are instances where frustration and emotional outbursts can damage the parent-teacher relationship. In the midst of frustration, it is important to remember that teachers are human, and mutual respect is crucial. Harsh comments directed at teachers can strain the relationship and may inadvertently affect the child’s education.
In summary, mutual respect and open communication are vital for fostering a positive relationship between parents and teachers, ensuring that the child’s educational needs are met effectively.
Diane Wiscarson is the founding attorney of Wiscarson Law, the only firm in Oregon with a primary practice area of special education law for families, and has represented thousands of families of special education students in Oregon and Washington. Mackenzie Rawlings is a third-year student at Lewis & Clark Law School. Find more information at
health & wellness
MELTDOWN Asking Autistics: What Do Meltdowns Look Like For You?
by Lyric Rivera aka NeuroDivergent Rebel
My feelings and reactions always seemed to be “too much” for other people, so I learned to contain them, dulling them down or putting them away (in a mental container) to “handle later” when I was alone with no eyes upon me to judge me.
The lights were too bright, the room too busy, loud, and chaotic, but I kept my discomfort to myself (because I didn’t feel safe admitting I was miserable while everyone else was having fun).
The comments hurt my feelings, but I kept it to myself because I’d grown used to not expressing myself openly with people. I was feeling unwell and needed to go home, but I stayed way longer than I should have because I didn’t feel like I could speak up about my feelings.
I learned to repress (instead of express) because people reacted poorly to me whenever I tried to share what I wanted, needed, and felt. I learned to “bottle it all up” because I had no external outlet for my experiences.
I swallowed my rage, discomfort, worries, and pain over and over again (because I was used to people around me not giving me space to express my feelings and needs).
Everything that is unexpressed is “put away” or “on pause” and placed in a holding area that has limited space. The emotions are raw and unprocessed, flammable fuel for a mental explosion if they’re not “vented” before it’s too late.
The container that holds my discomfort and despair was small when I was young but expanded to contain more as life’s demands upon me grew. More recently, my container seems to have shrunk (from a 44-oz XXL soda to a teacup), leaving me raw and with little to no ability to “pause” the big emotions that come my way.
When my container overflows, I “explode” with the force of a shaken soda bottle.
To the onlooker, who cannot see my internal container, it often seems as if I’ve “gone off” because of some “tiny thing” (because observers are unaware of all the baggage that I’ve been carrying around in my emotional container for hours, days, weeks, months, even years).
Very rarely, “just one thing” sets me off (unless that one thing is BIG).
The reality, unseen by outsiders, is that I’ve been emotionally flushing my emotions down, packing them in, and they’ve run out of space in the container, so the container now must empty itself—like a clogged toilet.
All the repressed pain flows out of me in a cathartic release.
Once set in motion, a meltdown is like a roller coaster I must ride to completion. I’m in its grasp; it has me, exhausts me, and leaves me wrung out like a towel, spilling the emotions that had been suffocating me from within all over everything and everyone around me.
I used to fear and be ashamed of my meltdowns when I didn’t know what they were (or why they happened). Back then, I was at their mercy, unable to understand, predict, and prevent them. When I didn’t understand these explosive
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events and the building pressure that happens when people swallow their emotions, shame was my defense mechanism.
If I felt a meltdown coming or I started to cry, I would run away, isolate myself, and hide from others so they could not see me, and I wouldn’t do or say something to them that I might regret later.
I put myself in “time out,” isolating myself (even if what I want more than anything is to be held and told I’m safe) because I worried about what I might do when my threat responses are activated.
I know meltdowns often lead me to say things I’d never say when my mind is not overloaded. I’ve known this for years, even before I knew what a meltdown was.
I didn’t know what caused my meltdowns, how to prevent them, or what to do when I had them so that I could help soothe myself and get through them more easily. This not knowing only amplified my shame.
Learning what meltdowns are, why they happen, and that I’m not alone in experiencing them has helped me feel less alone.
You are not alone if you have meltdowns (or other kinds of overloads). In fact, many people out there know exactly what you are going through.
Today, to help people who experience meltdowns and those who love us better understand the phenomenon, I am sharing feedback from a question I recently asked my readers:
#ActuallyAutistic #AskingAutistics - who experience meltdowns:
How would you explain what they are to someone who has never had one?
It’s very physical for me. This sense of tingling cold anxiety, and then being way too hot, then freaking out, then going straight to exhausted. It’s not always super visible, sometimes it’s internal and I can get away before it turns into full yelling and crying in public (always delightful).
It kinda feels like one of those... does anyone remember those big funnels where you slide a coin down the slot and watch it spiral down (sideways, like upright) and as it gets closer to the bottom and the thing narrows it gets louder and louder, that wrrrr-wrrr-wrr-WRR-RR-RR? It’s kinda like that. Like just watching that coin slowly spiral down towards the floor, knowing that it will inevitably reach the bottom. And it sometimes feels like there’s nothing I can do to stop it.
– Will (they/xe)
I’d probably compare it to a panic attack – Anonymous
It feels like (often not always) small stuff building up gradually, through the day, like some sort of pressure, till eventually it gets too much, you can’t hold it back and it automatically releases. Some triggers though make me so overloaded that it can lead to a meltdown rapidly. I’ve been diagnosed autistic but suspect ADHD also and a big trigger which I can’t control is being forced to stay in the same place or doing the same stuff too much, and I don’t even realise one is coming till it’s too late, as I have some degree of alexithymia also and don’t realise why I’m feeling a particular way till it’s too late.
– Leon McCluskey (they/them)
Slowly and unnoticeably as the tectonic plates rub against each other, sometimes for years. Then a feather drops and things start shaking “out of the blue” with “no previous warning” and well, stuff breaks. – Anonymous
I’m AuDHD. I have feeling of going “higher” and up out of my body, and it’s definitely a state of dissociation and I feel out of control where I can’t stop with a feeling of rage and anxiety. My mind is racing and swirling in a spiral. I’m feeling way too much. Everything feels too much. Sometimes I will zoom in and hyperfocus and repeat a phrase or word over and over depending upon the trigger/topic that set me off. I also have CPTSD to add in the mix. – Kristy (she/her)
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 posts like these on Facebook, visit https://www.facebook.com/NeurodivergentRebel)
You find yourself crying seemingly out of nowhere sometimes. Part of you knows that what you’re crying about is a small thing but the other part just wants to cry. – Breanna
Like when a cartoon [character] slowly fills up red and steam blows out of their ears and you can’t do anything about it till the steam runs out. – Anonymous (they/them)
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Imagine having the worst day you’ve ever had and how your emotions were basically uncontrollable by the end of that day. Maybe you cried or yelled or ate junk and then felt guilty after but couldn’t really stop it in that moment. It’s like that but just because things are too bright or loud or too much is touching you at once. – Dani Reichman (they/them)
When you hate how you’re acting and have no power in the moment to stop it. – Ross Troyer (he/him)
When everything starts piling up all at once and you’ve taken it for so long you just can’t take it another second. The environment is too loud, the lights are blaring, it’s too hot/ cold, something happened earlier you can’t shake, you can feel something in your shoe but can’t seem to get out, you’re anxious, you’re hungry, etc. Once it’s all too unbearable anymore, that’s when I break down. We take so much every single day that sometimes it just gets too overwhelming and we can’t mask tolerating it any longer. – Anonymous
The most frightening loss of control where I just want to hurt myself to stop the overwhelming turmoil that’s building up for sometimes weeks. The absolute exhaustion that follows and leaves you hollowed out and feeling shame from losing the control that your self regulation tries to keep in balance. – Keira Taylor
Meltdowns for me are when I can’t get a handle on my sensory input or too many factors are out of my control. I feel an overwhelming sense of irritation and anger sometimes, and then this sense of feeling helpless to do anything to fix the situation, and I lash out or cry. I’m 45 and I still have meltdowns on a regular basis. I used to feel so ashamed. I still struggle with feelings of shame, but now I finally know what it is, and I’m able to course correct and soothe myself. – Mandi Priest (she/her/they/them)
It’s too much activity in your brain all at once. Need time to let whatever is happening chemically, like adrenaline, drain off and time to let my brain be calmer, electrically. Just don’t add to the stimulation and I’ll get through it. – Skye A. (they/them)
To join in the conversation, here is the link to the original Facebook post: https://bit.ly/aameltdowns
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.coma
The Anatomy of an Autistic Meltdown:
The train has NOT YET left the station.
By Dr. Anson Service, aka Neurodivergent Doctor
Have you seen the viral videos of people totally freaking out in public over something, like the woman who screamed and cried at the top of her lungs for over 20 minutes at her friend because he was not helping her? The comments are brutal, accusing her of being selfish, entitled, and immature.
My heart breaks for them both because I recognize the behavior in some of these videos as a person having an autistic meltdown, something they cannot control in the moment. Unfortunately, those vulnerable moments are sometimes recorded and broadcast to the world.
Imagine your worst moment, something that does not define who you are at all, being the only thing millions of people see about you. I’ve seen these types of behaviors in public as well and have heard many of my clients recounting their own stories of losing control of their emotions and body both in private and in public with all of the humiliation and shame that accompanies it.
I believe one of the best tools we have to help with problems that we autistic people face is education. We should not only educate others about our conditions and support needs but also educate ourselves about what we are experiencing
This article is based on what well over a thousand autistic people I have worked with have described to me. Some of their experiences coincide with established research findings, while others are just what they go through but are often unclear about what to call it.
I have had the question posed to me many times:
How do I tell the difference between a meltdown, a panic attack, or a tantrum?
What is a Meltdown?
Meltdowns are intense, overwhelming reactions to sensory, emotional, or cognitive overload (Bogdashina, 2016) and are very common among autistic individuals I have worked with.
• Meltdown: A psychological and physical response to overwhelming stimuli, often triggered by sensory overload. There is no primary gain or manipulation during a meltdown; it is simply a way the body and brain cope with overload (Attwood, 2007).
• Panic Attack: A sudden onset of intense fear, involving physical symptoms like chest pain or shortness of breath. Panic attacks usually peak within 30 minutes and involve a strong urge to flee (White et al., 2009).
Unfortunately, they are often mistaken for tantrums or panic attacks. Sometimes people are confronted by others, mid-meltdown, and told to stop it, as if they could just snap out of it or pull themselves together. But panic attacks and tantrums should not be confused with a meltdown.
Is it an Autistic Meltdown, Tantrum, or Panic Attack? What’s the Difference?
Though meltdowns, tantrums, and panic attacks may look similar to those witnessing one and have been known to feel similar to those experiencing one, they are fundamentally different.
• Tantrum: A controlled outburst aimed at achieving a specific goal. Tantrums are shorter and driven by a desire for attention or a specific outcome (Myles & Southwick, 2005).
What Causes a Meltdown?
Meltdowns generally occur after an accumulation of stressors (Attwood, 2007) which causes the central nervous system to become overwhelmed. This is thought to be a result of the overconnection of neurons in the brain. Things that can cause this are:
• Overstimulation: Too much sensory input like bright lights, smells, the wrong clothing for too long, heat, or loud noises can temporarily overwhelm an autistic individual (Bogdashina, 2016), and sometimes understimulation can cause this as well.
• Dehydration or Lack of Food: Physical needs, such as hunger, if unmet, can exacerbate emotional regulation issues and lead to or contribute to a meltdown (Myles & Southwick, 2005).
• Exhaustion: Mental and physical fatigue reduces an individual’s ability to cope. Add heat and hunger to that, and it becomes a powerful combination (Attwood, 2007).
• Hypersensitivity to Sensory Inputs: Sensory hypersensitivity is a persistent condition where even mild irritants can feel overwhelming, especially when relentless (Bogdashina, 2016).
• Uncomfortable Environments: Being in overwhelming or unpredictable settings can trigger a meltdown (Bagatell, 2010).
1. Pre-Meltdown: Escalation Phase
In the escalation phase, the individual often experiences rising tension and emotional overload, but this is often not noticed until the body begins to show the effects. As stress
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builds, individuals may report feeling “high tension” or “on edge,” with fear and anxiety amplifying irritability (White et al., 2009) and the body starts to go into a sort of fight-or-flight ready mode.
To others, this may look like anger, lashing out, or even rudeness, but these are expressions of internal distress (Attwood, 2007). There can also be a lapse in memory (Phung et al., 2022), and judgment.
• Physical Reactions: Increased stimming, such as rocking, hand-flapping, and muscle tensing can be common as they try to self-regulate (Bogdashina, 2016).
• Emotional Responses: They may make remarks they wouldn’t typically make, cover their ears, or become more sensitive to sensory inputs (Attwood, 2007).
• Behavioral Changes: This phase often looks like irritability, anger, or sudden emotional outbursts, but it is the individual’s way of responding to overwhelming stimuli (Kristy & Nicholas, 2018).
At this stage, the person may warn you that they are nearing a meltdown. It’s crucial to take their request for space or calm seriously and help mitigate the situation before it escalates.
2. The Meltdown: Loss of Control
Once a meltdown begins, it is characterized by the partial or complete loss of emotional and physical control. This often means that it is difficult, if not impossible, to stop once started.
I use the metaphor of a train that has already left the station. It’s a force that takes a long time and great deal of effort to stop, if it can be stopped at all before it has run its course.
A person experiencing an autistic meltdown may experience blackouts, hyperventilation, uncontrollable crying, a sensation of impending doom (Attwood, 2007), heating up, blurry vision, or the tensing of muscles (Phung et al. 2022), among other things.
They might say things they do not mean, or may say things they would not say when in control of their body and emotions (Kristy & Nicholas, 2018). They may do things such as throwing objects, screaming, or even lashing out physically (Bogdashina, 2016). Their thoughts may spiral, often resulting in a catastrophic view of the world, with fears of rejection or abandonment (Myles & Southwick, 2005).
This stage may resemble a panic attack or an intentional violent outburst, but it’s essential to recognize that the individual has no real control over what is happening (White et al., 2009).
3. Post-Meltdown: Recovery Phase
After a meltdown, the individual may feel physically and emotionally exhausted.
• Fatigue: Recovery can take hours or even days, and headaches are common (Attwood, 2007).
• Memory Gaps: Some individuals may not recall the details of the meltdown and feel embarrassed when later told about their behavior (Kristy & Nicholas, 2018), (Phung et al. 2022).
• Guilt and Shame: They often feel deeply upset about what happened. Criticism or shaming at this stage only adds to their emotional burden (White et al., 2009).
Understanding, Not Judgment
When someone is experiencing a meltdown, it is essential to approach the situation with empathy, understanding, and patience. A meltdown is not fun for the person going through it, and it is important that those who are there to support the person recognize the process of a meltdown, not misidentify it as something else, and not take it personally.
It is vital that loved ones and friends understand how to help a person while in a meltdown, or better yet, how to identify the makings of a meltdown to stop it before the meltdown train has left the building.
References:
References and additional recommended reading for this article can be found at: https://www.spectrumlife.org/blog/anatomy-of-an-autistic-meltdown
To read other columns by Dr. Service, visit: www.SpectrumLife.org/neurodivergentdoctor
Check out his 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.
Autism, Direct Instruction, and Having Friends
From Sore Loser to Good Loser: Teaching Personalized Skills
By Judy Endow, MSW, LCSW
Social understanding and communication are two areas impacted by autism neurology. This plays out differently from one autistic individual to the next. Typically, for autistics I have worked with, this means that they do not always pick up social information from the world around them through observation only as most people do. Instead, they sometimes need direct instruction concerning information their autistic neurology doesn’t allow them to pick up and learn automatically.
I think it is important that those around autistic people understand that not having a typical social understanding of same-age peers is part of what autism means. Many times, I have seen well-meaning adults blame autistics for behavior that is a result of their brains not picking up and synthesizing social aspects of many things in the way people with typical brains do.
It is common for adults to think that since the autistic person is smart, they should know better and that they are choosing to behave rudely. This misattribution has so many negative and far-reaching consequences for everyone involved
In general, it seems that people looking at an autistic person really cannot see the autism. This means it is difficult for most people to know what behaviors are reflective of the underlying autism. If a person has a broken arm, we can see the cast and understand the person will not be able to use his arm as typically expected.
If an autistic person does not have the social understanding of how to act when losing a game, we may see him act as a sore loser. We do not see the differently connected neurological pathways that feed information from a variety of brain areas in a split second that are not connected in the usual manner and, therefore, cannot be used to pull up good loser behavior.
That is, we cannot see the autism at play—we can only see the sore loser behavior
To help in seeing the autism when it comes to areas of unexpected behavior due to atypical social understanding that is part of the basis of an autism diagnosis, here is an example of direct teaching that took place over several months for a 12-year-old boy to learn the skills involved in being a good loser. Learning these skills allowed him to play games with others his age—something he very much wanted to do.
Example of Direct Teaching on How to Be a Good Loser:
Rodney could only play games if he could be assured ahead of time he would win. He would actually say, “I will only play if you let me win.” Rodney very much wanted to play video games and board games with others, and even though he had above-average intelligence, couldn’t grasp why other 12-yearolds didn’t want to play with him.
Social Story: I wrote a social story as a way to give Rodney the social information around winning and losing when playing a game.
Cartooning: Additionally, each time Rodney played a game, he would relay the information and I would draw it out in cartooning style with thought bubbles for talk. Once the sequence of events were drawn out, we would go back over it and fill in thought bubbles. Rodney was often miffed as to the thoughts and feelings of others. He would sometimes take the cartoon home so he could ask his parents if I had the thought bubbles “right.”
Modeling: Additionally, each time I saw Rodney, we played UNO, and he won. I was very demonstrative in portraying good loser behavior along with identifying it as good loser behavior.
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Visual Support: We even started a chart called “How to Be a Good Loser” and took turns writing down my good loser behavior.
Video Technology: Then, we would watch a YouTube clip that showed kids playing games, particularly watching for good loser behavior. Eventually, we watched both good and bad loser behavior of kids playing games, and Rodney became quite good at sorting out which behavior was good and which was not good.
Visual Response Prediction Rating Scale: Because Rodney was fond of science and experiments, we made a loser behavior rating scale where we decided, based on the loser behavior, whether he would be invited to play another game with his opponent. Here is a snippet from that scale.
Likelihood of Being Invited to Play Again
Predictability: Whenever it looked like I was close to winning, I would announce it so as to prepare Rodney, though he was keeping track pretty accurately.
Non-Verbal Prompting: The first time I was near winning, Rodney announced he no longer wanted to play UNO. I pointed to our chart so he could be reminded of where that reaction was likely to lead. I started watching one of his video clips. He didn’t want to watch it, but because I was watching it he heard himself portraying his good loser behavior.
Allowing Extra Time for Processing During Difficult Moments: I told him to let me know when he was ready to finish the game. He took the iPad and watched the video clip and then said he was ready. It was really hard for him that first time he lost, but he was able to pull up the desired behavior.
Play Acting Desired Behavior: Next, Rodney practiced the good loser behaviors as if he were an actor in a play. I wrote a script where the characters, Jack and Jane played UNO with Jack winning the first game and Jane winning the second game. Each character exhibited good loser behavior when they lost. Rodney could do this play-acting, but he would always inform me, “This isn’t a real game. It is reading script.”
Video Technology: Then, we made our own video clips on Rodney’s iPad with him playing the character Jack being a good loser. We watched these video clips many times. It allowed Rodney to solidify the picture of himself using good loser behavior.
Predictability: Finally, I told Rodney that I would let him win games 1, 3 and 5 of UNO, but games 2 and 4, I would play my best and this meant that sometimes he might win and sometimes I might win.
Video Technology/Vicarious Behavior Rehearsing/Priming: Right before games 2 and 4 we would take a break to look at our Jack video clips.
Repetition and Practice: Eventually, with more practice, Rodney was able to pull up the good loser behaviors. In the beginning, he needed to know before starting the game whether I was going to let him win or not. Eventually, we both played our best, neither one knowing who would win until we came to the end of the game.
Desired Outcome Achieved: Ultimately, Rodney was able to play games with others, which is what he so much wanted to do. One day he greeted me with an impish smile on his face and shyly said Darius had invited him to a sleepover on the weekend so they could play video games. He said, “I hope I win, but if I don’t I’ll be a good loser. I have to because mom says if it goes well I can invite Darius for a sleepover at my house next time.”
In retrospect, I could have added in a reinforcement system when Rodney started losing for real. We often reward ourselves when we do hard things well. Setting this up for Rodney likely would have helped him master the skill sooner. It would have also opened the way for us to talk about how he might choose to reward himself in the future when he does something well that was difficult for him to do in the moment.
For example, if he loses graciously while playing a game with a friend, he might get 15 minutes extra of screen time (negotiated ahead of time with his parents). This would be similar to me deciding that on work mornings where I start with several hours of email to answer, I will have a bagel with my coffee!
We all set up self-reinforcement. Some of us do this without thinking much about it and others need to be directly taught to do this. It is simply another one of those lifelong skills that can be directly taught!
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It is also noteworthy that many autistics need some sensory modifications to the environment, breaks to regulate their sensory system, instruction on how to play the game and other supports particular to the way autism presents in them.
I have used Rodney’s example because it required many different support strategies over a long period of time for him to experience his desired outcome of having friends play games with him. Others I have worked with required both less and more in the areas of support strategies and time to learn new skills.
While we can all learn from Rodney’s example and find many useful strategies, how support is given to another person needing to learn a similar skill will work best when it is individualized to the needs of that person.
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
Eating, ARFID, and Autism: It’s Not Picky Eating
By Dr. Anson Service aka Neurodivergent Doctor
One of the often overlooked and sometimes hidden challenges many autistic individuals face daily is difficulties with eating. These challenges can range from food aversions and rigid preferences to more severe cases of Avoidant/Restrictive Food Intake Disorder (ARFID).
It is not uncommon to hear a person being tested for autism tell me they were a “picky eater” as a child. However, as more details are revealed, it becomes clear that their experience was much more than just being a “picky eater”.
About 70% of autistic children have atypical eating behaviors, which is about 15 times higher than neurotypical children (Mayes & Zickgraf 2019).
Why do we neurodivergent people not like to eat?
As a clinician and a neurodivergent myself, I have struggled with this throughout my life. Thankfully, it has become less problematic as I have aged, but still poses a problem for me. But why is this such a problem for me and millions of other neurodivergent people?
• Sensory hypersensitivities related to food can involve all the senses, not just taste. The texture, smell, and sight of food can play a role in our ability to eat. This can even extend to the type of utensils being used, with some needing plastic utensils because of sensory issues with metal utensils.
• Food neophobia, or the fear of trying new foods, is another common issue as many autistic people face. They find comfort in foods and menus they know well.
• Anxiety can inhibit the appetite and leads to stomach problems, such as ulcers.
• Some may have a history of being forced to eat foods when they were feeling icky, sad, or anxious, or were forced to eat foods they simply hated, which for many can still be the source of trauma. This is a good example of the importance of allowing autistic children greater autonomy.
• Autistic children tend to prefer high carb, low fiber foods. Unfortunately, this diet can cause gastrointestinal problems, which for many means having less of an appetite and feeling icky (Levy, 2019).
The Role of ARFID in Autism
Avoidant/Restrictive Food Intake Disorder (ARFID) is a relatively new diagnosis that goes beyond “picky eating.” ARFID is characterized by an avoidance of food that leads to significant nutritional, social, and health consequences.
This disorder differs from eating disorders like anorexia or bulimia because it is not driven by body image concerns but is often linked to sensory issues, anxiety, or trauma related to food. ARFID is disproportionately prevalent in autistic individuals compared to the general population (Norris et al., 2020).
Nutritional deficiencies are a major danger with having a restricted diet. Research indicates that many autistic individuals may lack essential nutrients such as fiber, iron, calcium, and vitamins D and A (Sharp et al., 2018). This can lead to longer-term health complications like weakened immune function, developmental differences, and poor bone health.
There are also social consequences related to these eating challenges. Most cultures value mealtimes as a meaningful social activity. Many autistic individuals are uncomfortable sitting and eating with others.
I remember being extremely distressed and even terrified of being asked to eat with others because I had an extreme dislike for many foods and did not want to draw attention to myself or embarrass myself for not eating what was served. I knew that refusing a person’s cooking could be considered rude, and I refused many offers to eat with others simply based on not knowing what was going to be served.
In group settings such as schools or family gatherings, autistic children and adults may struggle to participate in communal meals, which can further heighten feelings of anxiety, loneliness, or social exclusion. I have spoken with dozens of people who felt torn about eating alone at school during lunch because they wanted to be included in a group, but the thought of eating with a group made them very uncomfortable.
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Addressing Eating Challenges in Autism
Understanding and accepting that autistic individuals may struggle with serious eating difficulties is essential for parents, spouses, caregivers, friends, and healthcare providers to offer support and eliminate harmful practices based on traditional societal expectations. While treatment approaches can ideally include specialists such as dietitians, occupational therapists, and behavioral therapists, the key is providing the best quality food, with minimal barriers that may inhibit eating.
What To Do About it:
1. Psychotherapy: There are various interventions that can be helpful in the safety of a therapeutic setting, such as introducing new foods gradually, helping individuals become more tolerant of different food textures, tastes, appearances, and smells.
2. Nutritional Counseling: Working with dietitians ensures that nutritional gaps are addressed through dietary supplements or creative alternatives to meet essential dietary needs.
3. Removing Barriers to Eating: Think of all the reasons a person might be dissuaded from eating. Some will not make a meal if others are in the kitchen while they are preparing food. Some may not eat any food that is not able to be prepared in a few minutes. Others need the right environment to eat in. There are many other barriers to eating better foods, and it is important to identify and eliminate these barriers.
4. Distracted Eating: Many have found that being distracted while eating leads to eating more or eating less. I have found that it is more difficult to eat if I am focused on what I am eating. Television, social media, or music may provide enough of a distraction to eat more.
5. Interesting Adventures in New Foods: Learning about new foods, possibly from another country or culture, and then trying it with the intent of expanding the food experience in a fun, interesting, and exciting way.
6. Drink Your Meal: I posed the question to some of my subscribers on the internet: What helps you eat when you just don’t want to? One of the most common and helpful answers was to drink your meal. Soups, nutritional shakes, smoothies, and other liquid forms of food are not only quick to prepare, but they are easy, often tasty, and can be consumed on the go or while engaged in another activity.
7. Automate Your Food Delivery: One of the most difficult parts for many is having access to fresh food because they do not want to shop for it. Additionally, once they do have fresh food there may be challenges with storing fresh food or using it before it goes bad. Consider meal subscription services that deliver higher quality meals that are easily prepared or pre-prepared. Yes, these tend to be on the more expensive side, but so is throwing out $40 worth of last week’s produce. A meal subscription may also eliminate food decision paralysis—no need to choose what you are going to eat day after day.
8. The Safe Foods List: Keep a list of “Safe Foods and Meals” on the refrigerator for those mealtimes when you cannot think of what to eat. Hopefully one food item will stand out as tolerable, if not appealing.
9. Positive Mealtime Vibes: Mealtimes shouldn’t feel like a cage match. Create an inviting, positive, calm environment at meal time. Avoid negative vibes, force, or coercion. These are more likely to turn mealtimes into a power struggle, and trust me, nobody wins that type of food fight (Suarez et al., 2014).
10.
10. Oooh, That Looks Delicious!: Some people are visual. Not knowing what a food looks like can affect a person’s appetite. Use pictures of the finished food with an explanation of what foods will be served and what they can expect. It’s like giving them a picture menu so there are no surprises (Rogers & Pennington, 2018).
Eating challenges in autistic individuals are often multifaceted, stemming from a wide range of possible challenges, such as sensory sensitivities, anxiety, hyperfocus, or ARFID. It is critical to recognize these challenges early and provide the necessary support to promote a balanced diet and overall health.
By using therapeutic strategies that address both the sensory and behavioral components of restricted eating, caregivers can help improve the quality of life for individuals with autism.
References:
1. Norris, M. L., Spettigue, W., Katzman, D. K., & Zucker, N. L. (2020). Avoidant/restrictive food intake disorder (ARFID) in children and adolescents: A review of the literature. European Eating Disorders Review, 28(6), 649-670.
2. Landa, R. (n.d.). Center for Autism and Related Disorders (CARD). Kennedy Krieger Institute (2019). Nutrition and Autism Spectrum Disorders
3. Sharp, W. G., Burrell, T. L., & Jaquess, D. L. (2018). The autism and feeding questionnaire: Impact of feeding problems on autism spectrum disorder. Journal of Pediatric Gastroenterology and Nutrition, 66(4), 445-450.
4. Suarez, M. A., Atchison, B. J., & Lagerwey, M. (2014). Sensory processing, and eating problems in children with autism spectrum disorders. Autism Research and Treatment.
5. Rogers, S. J., & Pennington, B. F. (2018). Interventions for autism spectrum disorders. Annual Review of Clinical Psychology, 4, 295-316.
Other Scientific Reading:
1. Mayes, S. D., & Zickgraf, H. (2019). Atypical eating behaviors in children and adolescents with autism, ADHD, other disorders, and typical development. Research in Autism Spectrum Disorders, 64, 76-83.
2. Bandini, L. G., Anderson, S. E., Curtin, C., Cermak, S., Evans, E. W., Scampini, R., Maslin, M., & Must, A. (2010). Food selectivity in children with autism spectrum disorders and typically developing children. Journal of Pediatrics, 157(2), 259-264.
Continued on page 54
3. Kuschner, E. S., Benarroch, A., & McPartland, J. C. (2015). Food refusal in children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 45(5), 1113-1121.
4. Volkert, V. M., Vaz, P. C., Piazza, C. C., & Patel, M. R. (2014). Behavioral interventions for food refusal among children with autism spectrum disorder. Behavioral Interventions, 29(1), 83-103.
5. Koegel, L. K., Koegel, R. L., & Ashbaugh, K. (2012). The benefits of early intervention for autism spectrum disorders. Autism Spectrum Disorders, 1-27.
6. Silverman, A. H., Tarbell, S., & Neyens, D. (2018). Evidence-based treatment of avoidant/restrictive food intake disorder. Journal of Pediatric Gastroenterology and Nutrition
7. Sharp, W. G., Berry, R. C., Burrell, T. L., Stubbs, K. H., & McCracken, C. (2017). Feeding problems and nutrient intake in autism: A systematic review Journal of Autism and Developmental Disorders, 43(9), 2210-2224.
To read other columns by Dr. Service, visit: www.SpectrumLife.org/neurodivergentdoctor
Check out his 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
PEDIATRIC THERAPY CENTER
Upcoming Activities • www.AutismEmpowerment.org
Visit our website for updates, Facebook group links and community activities.
Autism Empowerment Upcoming Activities
Autism Empowerment / Hold My Beer Fundraising Event
Saturday, November 16th, 2024
4:00 to 9:00 pm
Loowit Downtown Pub & Brewery 507 Columbia Street Vancouver, WA 98660
Premiere Screening of Hold My Beer with Second Player Score and Autism Empowerment
Come celebrate the launch of our Vancouver-based short film and pilot episode!
Thursday, January 23rd, 2025
Doors open at 6:00 pm
Kiggins Theatre 1011 Main Street Vancouver, WA 98660
FREE admission. For information, visit: https://www.facebook.com/holdmybeerfilm https://holdmybeer.mov
PODCAST PROGRAMMING
Autism Empowerment Podcast New Episodes in Fall 2025
(Thanks for your patience. We’re reimagining and rebranding! Stay tuned for a New Series!)
Wherever you identify in your autism or autistic journey, Autism Empowerment is here to meet you along the way with acceptance, enrichment, inspiration, and empowerment for the road ahead.
Episodes, Trailer, Show Notes, and Transcripts at: www.AutismEmpowermentPodcast.org
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