Spectrum Life Magazine Winter 2023 Issue from Autism Empowerment

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HOOP.CAMP - 30 YEAR S OF UNIF IED SPOR TS AUTI SM A ROUND THE WORLD P AT H O L O G I C A L D E M A N D AV O I D A N C E A D AY I N T H E L I F E O F J E N N Y B R I S T O L #ASKINGAUTI STIC S: HIGH FUNC TI ONING? A D AY I N T H E L I F E O F R E B E C C A B U R G E S S H O L I D AY C A R O L I N G T H E S P E C T R U M L I F E W AY - 2 0 2 3

W I N T E R 2023

WINTER 2023

contents

HOOP.CAMP - 30 YEARS OF UNIFIED SPORTS

FEATURED SECTIONS

4 5

From the Publisher Prioritizing our shared humanity. Connections for our Community The Power of Content, Community, and Connection.

ADVOCACY

7 10 12

#AskingAutistics with Lyric Rivera Person with Autism or Autistic Person? Navigating with Niko: Incubation The role of incubation in finding inner balance. Autism, Accommodations, and Differential Expectations Deconstructing the double standard.

LIFESPAN

15 16 22

Navigating with Niko: Selective Eating Sensory sensitivity and the evolution of my palate. A Day in the Life of Jenny Bristol Writer, multipotentialite, and devoted family member. A Day in the Life of Rebecca Burgess Thoughtfully creative illustrator and author.

Recreation

27 32

Hoop.Camp 30 years of unified sports and inclusion. Ask Spectrum Life Holiday caroling the Spectrum Life way.

EDUCATION

35 40

2023 SW WA Autism Conference Recap Reconnecting, Reviving, Rebuilding. Autism Around the World AE’s latest Zoom Autism issue goes international.

HEALTH + WELLNESS

44 48

#AskingAutistics - High Functioning? False assumptions about functioning levels lead to harm. A Fitness Approach for Every Body Building relationships in inclusive fitness.

therapy

52 55

Pathological Demand Avoidance Let’s reframe it: Persistent Drive for Autonomy. Upcoming Autism Empowerment Activities Connection, Compassion, Community.

www.spectrumlife.org

FROM THE PUBLISHER

SpectrumLife TM

m a g a z i n e

WINTER 2023 | VOLUME 13, ISSUE 3 SPECTRUM LIFE MAGAZINE TM A program of Autism Empowerment TM Karen Krejcha, Autism Empowerment, Publisher Dave Born, Graphic Designer

It has been a whirlwind season. For the first time, Autism Empowerment is publishing two different magazines in the same month. In addition to Spectrum Life, we just released Zoom Autism Magazine, Issue 20. The theme is Autism Around the World (page 40) and within its 68 pages, we have autistic writers and artists from all around the globe, and resources from over 150 countries! A key point we highlight in Connections for our Community (page 5) is the power of Community. We’ve also been busy speaking and exhibiting at events and conferences, including the 13th Annual SW Washington Autism Conference (page 35) in Centralia. We often meet amazing advocates at special events. One such person is Steve Garrity, founder of Hoop.Camp (page 27), our cover story. Hoop.Camp has been providing unified sports and inclusion for 30 years! Continuing with the storytelling, we’re thrilled to share A Day in the Life of Jenny Bristol (page 16) and A Day in the Life of Rebecca Burgess (page 22). Navigating with Niko (pages 10 and 15) covers two interesting topics: incubation and selective eating. Ryan Lockard writes this time about A Fitness Approach for Every Body (page 48). We then get into more serious discussion as Dr. Anson Service takes on the topic of Pathological Demand Avoidance, suggesting we reframe it as a Persistent Drive for Autonomy (page 52). Columnist Lyric Rivera is back with a heartfelt discussion about the power of language in #AskingAutistics: Person with Autism or Autistic Person? (page 7). They then are #AskingAutistics (page 44) if they’ve ever been dismissed for being perceived as too high-functioning? Judy Endow also advocates in her piece about Autism, Accommodations, and Differential Expectations (page 12). Finally, for a bit of light fun, in this issue’s Ask Spectrum Life (page 32), we’ve brought back our 2nd version of holiday caroling the Spectrum Life way. We hope you enjoy Understanding Starts With You and The 12 Days of Inclusion. Merry Christmas and Happy Holidays!

Karen Krejcha Executive Director & Co-Founder: Autism Empowerment™ Editor: Spectrum Life Magazine™

www.spectrumlife.org www.spectrumsmagazine.org

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 www.AutismEmpowerment.org spectrumlife@autismempowerment.org Autism Empowerment is a 501(c)3 nonprofit devoted to promoting a culture of acceptance and empowerment for children, teens, adults and families within Autism and Neurodiverse communities. Autism Empowerment makes no warranty, guarantee, endorsement or promotion of any service provider or therapy option listed in this publication or our websites: AutismEmpowerment.org and SpectrumLife.org. This is a free community magazine created as a courtesy to the public. Autism Empowerment cannot be held liable for any action or decision based upon information found in this publication or our websites. It is the responsibility of individuals to discuss any therapy or treatment option with their care team. Every effort is made to ensure accuracy and verify information, however readers using this information do so at their own risk. No part of this publication may be reproduced or transmitted without prior written consent from the publisher, Autism Empowerment. © 2023 All rights reserved.

ON OUR COVER

Hoop.Camp and Founder Steve Garrity celebrate 30 years of unified sports and inclusion. (page 27)

Photo courtesy of Steve Garrity

Welcome to the Winter 2023 edition of Spectrum Life Magazine!

Connections for our Community By John Krejcha Hello and Happy Holidays! 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. In addition to sharing the meaning behind Autism Empowerment’s Four Foundational Pillars of Positivity: Accept, Enrich, Inspire, and Empower, in past issues, we have also shared the transformative power of a simple equation that propels many of our programs and services. That equation concept is Content + Community = Connection. In a world where neurodivergent people have a tendency to feel isolated and alone, Autism Empowerment provides a beacon of light and hope through relatable, thought-provoking and meaningful content that encourages the autism community to come together respectfully and learn from one another. We passionately believe that when we create and share enriching and inspirational stories, ideas, and resources through Spectrum Life Magazine, Zoom Autism Magazine, our podcast and other social media channels, we help promote a positive opportunity to connect people in our society together for relationships, friendships and meaningful community connections.

the people we serve are present. This includes autistic youth, teens, and adults, their parents and loved ones, educators, clinicians, service providers, other disability organizations, government agencies, nonprofits, and society members. It means being visible in as many places within the community as possible to spread autism acceptance and be Ambassadors for Acceptance of all Abilities. It also means meeting each individual where they are in their personal journey. It means sharing stories of Autism Around the World (see page 40), like in our latest themed publication of Zoom Autism Magazine, Issue #20, and seeing commonalities throughout the nations. This involvement includes participation in autism conferences and events such as the Southwest Washington Autism Conference we recently attended (see page 35), organized by the Lewis County Autism Coalition, or the Annual Autism Society of Oregon’s Walk each April. It means connecting with youth and families at all-abilities social events like Special Celebrations Trunk or Treat or Autism Empowerment’s Annual Picnic. It means going beyond disability-related events to engage with the community at local libraries, community centers, and health fairs. It’s about conveying the message that it’s time to move past awareness and move toward real acceptance.

Connecting with something bigger than ourselves can be transformative in many ways. As humans, we often feel less isolated, more understood, and more passionate about making this world a better place. One of the ultimate goals of Autism Empowerment is cultivating a feeling of empowerment that includes autistic empowerment and human empowerment.

That is why in addition to being visible through our media content and online, Autism Empowerment and Spectrum Life Magazine founders, board, and volunteers are committed to being out in our world and promoting radical inclusion in classrooms, workplaces, places of worship, and all facets of our community.

Today, I want to delve a little more into the second part of the equation, Community. Community is defined as a social unit with shared social characteristics, such as a place, set of norms, culture, religion, values, customs, or identity. We believe that people across the autism spectrum and human spectrum need and benefit from a sense of community.

When you see us out in the community, come say hello. Let us know that you’re a reader of Spectrum Life and how the concept of being an Ambassador for Acceptance of All Abilities plays out in your daily life. Let’s build a community of acceptance together.

Sometimes when we feel “different” or believe no-one else could possibly “get us” or understand our life circumstances, we have a tendency to want to retreat. However when we can find a common circle of people, even one or two who share a similar situation or who can empathize with the way we think or feel, the opportunity to bond, share experiences, and build unity forms.

Here’s to us coming together and having an amazing, acceptance-filled 2024. Acceptance for All, John

This is true whether we’re neurodivergent or neurotypical. A sense of community and bonding over shared experiences, wants and desires allow us to come together, lift each other up, and positively promote letting each of our lights shine, making our world a better place. Autism Empowerment’s role in helping to build Autistic Empowerment, human empowerment, and connected community members means being visible in the places where www.spectrumlife.org

advocacy EMPOWERING CHANGE WITHIN THE AUTISM COMMUNITY

IN THIS SECTION #AskingAutistics with Lyric Rivera ..............................................................................................7 Navigating with Niko: Incubation .................................................................................................... 10 Autism, Accommodations, and Differential Expectations .................................................. 12

www.spectrumsmagazine.org

ADVOCACY

#AskingAutistics Autistic Person or Person with Autism? By Lyric Rivera, NeuroDivergent Rebel I am very particular with the language that I use to describe Autistic People online because I believe in the power that language has to shape our social reality.

As with any other marginalized identity, the words one chooses to identify oneself with often come from a very personal place.

How we describe various groups of people matters because our language shapes how people think and behave.

If someone has a language preference for themselves, regardless of what the majority prefers, it is important to respect their choices when referring to the individual.

We can destroy negative stereotypes or unintentionally (or intentionally) reinforce them through our chosen language and words. This is true with how we describe all groups of people, but with Autism and Autistic People specifically (thanks to the history of the “autism cure movement” trying to “remove autism from the Autistic Person”), the idea of Autism being something “separate from” the Autistic Person, is particularly dangerous. Autism is essential to who I am. You could not “remove it from me” and leave the same person behind (which is why these cure narratives are so harmful... especially to Autistic People who have loved ones who get stuck, longing for the impossible - to remove the Autism from the Autistic individual). Without my Autism, I would not be me... because being Autistic influences my experience of the world around me, my personality, what I like, who I like, my understanding of gender, sex, and romance.... my hobbies, how I socialize, and MANY other things. I’ve done polls in the past, asking what those in my spaces prefer (Autistic Person or person with autism) many times, and every single time I ask my communities, they say “Autistic Person.” Those who prefer “person with autism” tend to be in a small minority (generally around 10-15%). The highest I’ve ever seen in favor of “person with autism” was 18% on a “blue puzzle people” Twitter poll - and that organization tends to use stigmatizing language for Autistic People freely, so one would expect people who follow their page to be more accepting of person-first language. I have an extreme preference for the language that I use to describe myself and my own experience. Because the group also has an 80% (or higher preference) in that same direction, I defer to the group’s choice when addressing the group as a whole. That said, while I am very intentional in my own use of language to describe the Autistic Community and myself, I also try to be respectful to the Autistic People who are in the minority and prefer to be described as a “person with autism” - because it is not my place to tell other people how to identify on an individual level.

Our community is one of many traumas, and many Autistic People will experience a lifetime of being told they “would be better off if they could be less Autistic.” This can lead some Autistic People to a lifetime of longing to give their Autism up—wishing they could cut it out of them. Even if what they wish for is impossible, that is the individual’s feelings, and it is not my place to tell them they shouldn’t feel that way (especially when living in this world is very hard for people like us). When I was first diagnosed Autistic seven years ago, and I first started venturing into social media (trying to find other Autistic People), most of what I found was NOT what I was looking for. There were many “Autism” groups and spaces online, especially on Facebook, but they weren’t led by (and definitely weren’t for) Autistic People. Most of these groups were filled with parents of Autistic Children looking for ways to “cure” their children’s Autism - many using something called MMS (Miracle Mineral Solution), which is sodium chlorite or, in higher concentrations, BLEACH to “strip the autism” from the child. Because of the idea that “Autism could be removed” from an Autistic child, revealing a non-autistic child “hidden underneath” the autism, desperate parents were literally giving their Autistic children BLEACH (thinking Autism was parasitic and the MMS/bleach would kill whatever was “causing the autism” inside the child). Luckily, these Facebook groups were exposed and shut down. Thanks to the work of Autistic advocates, many pushing this harmful trope have been charged, locked up, and fined. Years have passed since these groups and pages were easy to stumble onto on various social media platforms.

Continued on page 8

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#AskingAutistics, continued from page 7 Many newly diagnosed and discovered Autistics likely don’t even know these groups ever existed (and will be spared the horrific photos of sick Autistic children in pain from being fed bleach at both ends). When I was first diagnosed, these atrocities were in my face, easier to find than the voices of the Autistic People I wanted to connect with. Many people joining the Autistic Community only in the last few years don’t have the images of people desperate to “remove the autism” from their Autistic children burned into their memories as I do. They don’t remember. I can’t forget. This is the impact of person-first language (person with autism) instead of using identity-first language (Autistic Person) when describing Autistic People. Autism is core to our identity and can’t be removed from us. It’s also not something “wrong” with us or our weaknesses. It is also where we get many of our strengths. It’s who we are, and embracing every aspect of our identities without shame is essential to our mental health and emotional safety (which could be a separate article). Words matter. Language matters. Using more affirming language can help those in society become accepting and accommodating of Autistic People. Our language can enhance our empathy and understanding of one another – if the language is humanizing and affirming. However, if language is stigmatizing, overly harmful, (or separates Autistic and other marginalized people from other humans), it can further harm and contribute to their exclusion and stigmatization - as we’ve seen with Autistic People. While all of this is true, also the feelings and opinions of Autistic People on an individual level also matter, so as I’ve done many times before, I ask my community a question: #ActuallyAutistic #AskingAutistics: “Autistic Person” or “Person with Autism” or “other”? Why? I’m “Autistic” because without Autism I wouldn’t be me. Just my personal preference. Responses from #ActuallyAutistic Facebook: (Editor’s note: Out of respect to #ActuallyAutistic contributors, responses have been shared as submitted and are a sampling of many responses. To see posts like these on Facebook, visit https://www.facebook.com/NeurodivergentRebel)

I’m autistic because I should NEVER have to remind someone that I’m a person. Being autistic doesn’t make me less of a person. Being disabled doesn’t make me less of a person. No-one should EVER need to be *reminded* I’m a h person h regardless of my difference. – Cornus Joshamie Echevarría I’m autistic. I don’t carry my autism with me in a bag. – Abby Lastowski, Actually Owltistic (She/Her), actuallyowltistic.com I’m an autistic person just like I’m a Black person. I’m neither a person with autism nor a person with Blackness. – Dante Crossroad (he/they/she) I don’t really have a preference, but I do know this: I hate non-autistic people trying to tell me how I’m supposed to identify myself. – Erik P. Block Even though people try to tell I am not my diagnosis and I should not let my diagnosis define me. That might be the case with an actual medical condition such as diabetes. You can say a person who has diabetes. But a neurological difference such as autism affects every aspect of my life. I am who I am because of my autism. So I am an autistic person. – Carlie Person with autism (and ADHD) because I was taught decades ago how important the language is and how my son and I are not not just our (many) diagnoses. I’m having an extremely hard time shifting this in my brain to keep up with current community preferred language, which ironically, perhaps is part of autism for me! – Jessica Hyatt (47) – “I feel like the age piece is important for this particular topic (I’ve been thinking of autism in these terms for about 20 years).” I’m autistic in the same way I’m gay. I don’t have gay. It isn’t a handbag or an illness. – Lucy Matthews Autistic because we don’t say “person with children”, we say parent. We don’t say person who teaches, we say teacher. And so on. It seems weird to separate it out as if it’s bad. – Melody Autism isnt an “add on”; it’s my literal brain wiring - I’m Autistic. – Persona Non Greta Continued on next page

www.spectrumlife.org www.spectrumsmagazine.org

#AskingAutistics, continued from page 8

I personally care more about the intention of the person who says either rather than the semantics. If someone is trying to be respectful by saying “with autism” or “on the spectrum,” I am certainly not going to be offended by that. Personally though, autistic makes more sense for sure. – Tamara Henschell (she/her) Autistic because my neurology is an integral part of me. – Livvi Bechtold person with the “condition formerly known as aspergers” – David Good, founder of the International Friend Connection – Note from Lyric – “I like that this can open the door to a conversation about WHY we it’s not known that way anymore.”

I’m autistic. Person with autism implies that the autism is separate from me. You don’t say person with gay. You do say person with cancer. The cancer can be cured and that doesn’t change who the person is – Chandra Shakti To join in the conversation, here is the link to the original Facebook post: https://bit.ly/autisticorpersonwithautism 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.

Autistic. Even before I figured out I was, I worked with I/DD individuals and thought the “with” but was weird. It’s an adjective, just like transgender... it is one of many ways that describe me. – Alex Adams (he/him) Autistic because I can’t separate from it. It’s not tagging along “with” me. It is me. – Jodie Holmes, diagnosed at 60. I understand that autistic person is grammatically correct and it’s also my personal preference because I am an autistic human. But it doesn’t really upset me or bother me much when people get the terms confused – Salem (he/they) Autistic person, neurominority, Neurospicy, neurodivergent, many other versions but all around being part of my identity, woven into my very fabric of being. Just like I am not with pansexual or have pansexual, I am pansexual. – Naomi Johnson, Neurodivergent Disability Inclusion Leader Autistic person, it’s not a separate part of me that if I wanted to I could just remove it’s who I am and how I see the world – Allie March (she/they) Autistic person, because being Autistic is integrated into who I am. Saying “person with Autism” makes me feel like Autism is treated like a wardrobe accessory or piece of jewelry – Lee

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

www.spectrumlife.org

ng with i t ga

By Niko Boskovic

ko Ni

Nav i

ADVOCACY

The Role of Incubation in Finding Inner Balance

There have been times when I was really busy in a neurotypical sort of way. By that, I mean that I was getting up early to go to school, and had a full class schedule with homework after school. Not so typical was the time I spent in my bedroom cutting and spitting on little bits of newspaper advertisements in the darkness of the early evenings. I would cut paper for about an hour and a half while the rest of the household did whatever they needed to do. Eventually, I would get a ten-minute warning before dinner, and sometimes I made it down to eat with everyone. But that time I spent regulating in my room was essential to my well-being. There is self-regulation, and then there’s incubation, which may be a new concept for some parents. Incubation is a mentally-focused state that I have experienced in waves throughout my life. I didn’t experience it until my in-home Applied Behavioral Analysis (ABA) program evolved to be more play-based. When that happened, I started to trust the people trying to help me more and more until I was ready to let them take part in the ways I liked to play. This didn’t look “normal” either: we would cut paper and sprinkle it everywhere, and they would work on eye contact naturally and playfully. I think that period was my first time feeling like I was incubating, i.e., processing my environment without expectation of engaging in foreign behaviors. That’s what ABA taught - that acting a certain way was going to make it easier to navigate a really hectic and unfriendly world.

Photos courtesy of Loreta Skucas

When that expectation was lifted, I could let my guard down and find strategies to help tune out all the sensory streams competing for attention. That time period was hallmarked by an intense inner life: I was always thinking, trying out different tricks in my head... It’s easier to work on ignoring annoying electrical outlets when you’re feeling regulated than when others impose additional rules to the environment that leave you confused or stressed. That first incubation period ended when my parents put me in an ABA center. I wouldn’t call that center a traditional ABA program, but by that point, I wasn’t a fan of any therapy described in three letters or less. When I started learning how to letterboard, my mother asked them to consider helping me practice at the center so I could communicate with them. They weren’t interested, probably for their own reasons, but my time there was eventually shortened to two days per week so that I could practice letterboarding at home. I started taking part on a middle school track team and found I liked how tired I felt

10 www.spectrumlife.org

Continued on next page

Navigating With Niko, continued from page 10 after practice. It made my brain feel tired and finally relaxed. I felt I could letterboard better because my entire brain-body connection was stronger. This became a second incubation period in which I got really good at letterboarding and prepped myself for high school. That period lasted about a year, much like my first one did. It was a period filled with joy and discovery because I was finally being taught academics instead of compliance or worse, a toddler’s education. (The school officials who observed me at the ABA center then came to our home to observe me letterboarding a lesson about the Lusitania. Afterwards, they shared that when they observed me at the center, staff had been working with me to identify the letter T!) Currently, I’m in the middle of a third incubation period, but unlike previous times, this one feels very intentional. My parents fully support my decision to skip this term’s class to focus on keyboarding independently as much as possible. I’ve also been reading a lot of amazing disabled authors for the last eleven months, and feel like I’m learning so much from people who know that there is so much wisdom to be gained from listening to our stories of surviving, adapting, and informing others of how we fit in this beautiful world too. 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

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ADVOCACY

Autism, Accommodation, and Differential Expectations Deconstructing the Double Standard By Judy Endow, MSW, LCSW People generally are very pleased with themselves when they have made an accommodation for me. I know this because they proudly announce it! In turn, I have learned to say thank you when people announce their thoughtfulness at making an accommodation for me. I truly am thankful because it allows me a fuller participation in the events going on around me. It also makes me smile because I have been making accommodations for people my whole life, and it has never occurred to me to announce it! The fact is that autistics are required to make numerous accommodations every day they are among other people. This is because the world is not set up in a neurologically friendly way to autistics. We live in a very fast-paced world where speed in understanding and responding to people is expected. We also have much information constantly being delivered over numerous electronic devices. We expect everything to happen instantly! For the most part, this isn’t a good match for people with autism because we generally have a “too much” experience of the world due to the way our sensory system takes in information from the world around us. Once that information “arrives,” it is then, for many autistics, processed differently. A common result of our difference is referred to as a processing delay. This means it takes more time for us to process and respond. Not only is this is a huge disadvantage in our fast-paced world of instant expectation, but one unspoken assumption is that I will accommodate for my differences and act “appropriately,” i.e., act as a neuromajority person acts. It takes time and energy to accommodate another person regardless of whether you are the person with autism or the person without autism. Based on years of observation of numerous autistics, myself included, I can see autistics pay a much higher cost for the accommodations they must make as compared to the neuromajority person. Part of the reason is the sheer volume of accommodations an autistic is required to make each day compared to others. The really funny part of this is that autistics rarely are in any way acknowledged for the heavy burden of accommodations they must make just to survive in this world. In contrast, others are thought to be the people making the accommodations! Furthermore, I am expected to make accommodations for you while you have the option to choose when, if, and how often you will make accommodations for me.

This differential is a result of assigning the measure of “normal” to the experience of the majority of the people. Even though I make considerably more accommodations for you than you make for me, because your experience of the world is considered the norm and my experience the deviation, it is the understanding of the majority that I need you to accommodate me, and this is true. However, nobody notices all the accommodating other autistics and I have done all our lives! Another funny thing about this whole accommodation situation is that when you accommodate me, even if you do not announce it, everybody considers you to be a really good person for making accommodations for an autistic. For you, making accommodations is not only optional, but when you do so, you are considered a good person. For me, making accommodations for you is not optional. Because your ways are considered the norm, I am expected to do whatever I need to fit into this norm. It is expected, and therefore, no credit is given. In fact, the only time people notice me in regard to accommodations I make for them is when I neglect to make them! When I cannot or do not make accommodations for you, something is considered to be wrong with me. The double standard is that you are known as a good person for the accommodations you make for me while I can only be known as a bad person when I fail at making an accommodation for you. And just like you will not be thought of as a bad person when you fail to make an accommodation for me, I will never be thought of as a good person when I do make accommodations for you – at least this hasn’t yet happened in my life even though I have made considerably more accommodations over the years for neuromajority people than they will likely ever make for me! This article also appears on Judy Endow’s blog, Aspects of Autism Translated at www.judyendow.com.

Judy Endow, MSW, LCSW, maintains a private practice in Madison, Wisconsin, providing consultation for families, school districts, and other agencies. Besides having autism herself, she is the parent of three grown sons, one of whom is on the autism spectrum. Her latest book, Autistically Thriving, can be

purchased at www.judyendow.com.

www.spectrumlife.org

lifespan ALL AGES AND ABILITIES

IN THIS SECTION Navigating with Niko: Selective Eating...........................................................15 A Day in the Life of Jenny Bristol.............................................................. 16 A Day in the Life of Rebecca Burgess ....................................................... 22

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LIFESPAN N avigating with N iko S eries

Sensory Sensitivity and the Evolution of My Palate Embracing Change One Bite at a Time By Niko Boskovic When I was very little, probably around four years old, I only liked to eat a handful of things. I think it seemed a little strange that I would have eaten a variety of foods, given how overwhelming I found my environment. You see, I was completely inundated with every sensory stream around me, but for some reason, no one else seemed to be. They were unbothered by the way the refrigerator hummed out of nowhere or by the smell of deodorant that would border on sickly when its wearer got too close, or how the leaves on the tree across the street railed against the wind so valiantly that I could not look away.

Of course, as a young child, I didn’t have the vocabulary to know what I was experiencing, but I was incredibly aware that I was not in a safe world. Why else would it be so hostile to me? Eventually, I learned to focus on only a few things at a time. Much to my surprise, it helped. Having so many sensory streams muted at once was achieved through various ways: I jumped on a trampoline; I drizzled kinetic sand in front of my eyes for hours; I cut paper into little bits and sprinkled them into a big green box. All of this helped me regulate my incredible anxiety from an ever-speeding world. One area that I didn’t feel a lot of anxiety about was mealtime. I think it was because I ate the same things at every meal and knew what to expect in terms of the sensory experience, i.e., what the meal would smell like, how the food would feel in my mouth, and how it looked on the plate. I was on a gluten-free diet for long periods of time, and sometimes the food would not be very good. My point is that a lot of my experiences throughout the day were seriously impacted by my reactions to all the sensory input coming at me, including food. For this reason, I stuck to rice pasta with yellow mustard for lunch every day for years. There was continuity in that meal; no surprises or sudden flavors or textures that ruined its safe taste. That meal was a respite from the chaos and gave me peace, which is why I am grateful no one ever tried to force me to eat new things. So what happened? How did I gradually eat more and more new items? It didn’t take place overnight, but I did take the

first step one afternoon with my Personal Support Worker. She and I were out somewhere, and she ordered a quesadilla for lunch from a food cart. We spent a lot of time together because she was also my paraeducator at high school, and she was an outgoing person and generous with her motherly affection for me as well as my classmates. I spent my school lunch with her often, and in the open room where smells of individual lunches mingled with my yellow mustard’s sharp odor, her presence became a safe oasis. So on that afternoon when she offered me a bite of her quesadilla, I knew it would be okay. I had seen her eat them enough times to know that they were good. And so I took a bite, then another, and another, until it was gone. She relayed this event to my mom, and that’s when I started having food adventures at mealtime. That doesn’t mean I stopped having the same meals - in fact, I eat very similarly for breakfast and lunch, but dinner is a wild card, and both of my parents cook dinners they like to eat as opposed to catering to a child’s diet. It took me a long time to feel comfortable trying new foods, but I am so glad I was able to get here at my own pace and in a positive manner. 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

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LIFESPAN

A Day in the Life of Jenny Bristol Writer, Multipotentialite, and Devoted Family Member By Jenny Bristol, Illustrations by Rebecca Burgess Editor’s Note: Jenny Bristol was one of 13 autistic adults interviewed in the anthology “Actually Autistic Adults in the Real World - A Day in Our Lives” published by Geek Club Books (GCB). When GCB closed their nonprofit doors in 2021, Autism Empowerment collaborated with illustrator Rebecca Burgess, writer Jenny Bristol, and Jodi Murphy from GCB to continue the series through Spectrum Life Magazine. As it has been years since Jenny’s original interview, we are pleased to present a fresh update so you can get to know the devoted writer behind this powerful series. We joyfully present: A Day in the Life of Jenny Bristol... In which I interview myself, again!

her days doing freelance work and facilitating the life of her family. She homeschooled her kids all the way through their pre-college schooling, and would do it again in a heartbeat. Jenny (she/her) was diagnosed autistic quite late—at age 45— so had to learn to navigate childhood, adulthood, and parenthood all without the context of understanding the realities of being an autistic person in a world not designed for us. She had no effective vocabulary to explain her experiences. She is grateful, however, to not have been subjected to the kind of “help” that she might have received if diagnosed too much earlier. Jenny has now hit the half-century mark, and is looking forward to a new life chapter where she can tend to her own needs a bit more, while still being there for the family she loves. What does a typical work/school/regular day look like for you (or, if there isn’t a typical day, describe one that is representative of your life)? The older I get, the more appointments seem to have crept into my life. I try to schedule them for mornings, so I don’t have to wait around anticipating them the whole day. But on those days, I get started with work late, which means I get a lot less done. But on regular, non-appointment days, I start my day with some exercise, a shower, and checking email and social media, and then breakfast. Then I sit down at my computer and work on paying work, or a blog post, or writing on a book or other writing project, or some editing duties.

It is a little weird interviewing myself, especially because I feel like I could go on and on and on about my experiences. Since my last self-interview, I’ve read, listened to, and watched so many other (autistic) people’s content about autism—and also written on more autistic topics myself—that I feel like I have a broader understanding of different ways of being autistic than I did before, and how autism explains so much about who I am and how I exist in this world. For this re-interview, I’m going to revisit some of the questions I asked myself last time, and add on a few new ones. But first, a new intro! Jenny Bristol (that’s me!) is a freelance writer and author (among other things), classic nerd, parent of two young adults, and partner to a fabulous multiply-neurodiverse human. Jenny has published 2 1/4 books (so far!) and spends

Once I’ve gotten a sufficient amount of paying or other productive work done (as deemed by me), I might work on a craft project or go grocery shopping or organize part of the house or spend time with one of my kids (one works full-time but still lives at home, while the other is away at college, so this sometimes looks like extensive text messages or Facetime calls). In the evening, I might do something with my partner, Rory, or work on a personal project. Really, my life is pretty flexible (on purpose), but I still have a routine of trying to get the “must dos” completed before the “would be nices.” Work before play, because otherwise the work will never get done. Plus, I can’t seem to relax and enjoy my playtime when I have work hanging over me. With my kids more independent now, I have a bit more Continued on page 18

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A Day in the Life of Jenny Bristol, continued from page 16 control over my day. I still haven’t quite gotten used to that fact, though, so I still haven’t optimized my routine and can be easily distracted, because I’m so used to being on call for everyone. It would be easier if I had my own home office with a door I could close! What hobbies or interests do you have outside of your work? One of my biggest interests is researching and organizing my family history and genealogy. I have so many photos and letters and documents from generations gone by that need to be digitized for future generations. I also love to sew and crochet, read books, watch TV and movies, plan the layout of our future house, and also do logic puzzles (they’re how I relax, believe it or not). My interests also include anything relating to Jane Austen and her novels, travel, American history, maps, and writing. I love learning new things, and always seem to be researching or planning something. How does being autistic help or hinder your work or hobbies? Well, now that I know I’m autistic, and have settled into embracing it, I find that I have an easier time establishing boundaries for myself for my work. I don’t work to the point of mental exhaustion anymore, and cut myself a lot more slack. I also realize that, for the things I am really good at, it’s generally because I’m autistic. I have mostly found work recently that plays to my strengths, and currently have a work giver who recognizes and values those strengths, along with not putting pressure on me to do more than I can. I have not told him that I’m autistic, but it’s not something I hide online, so I imagine he might know. My paying work is quite varied, and my attention to detail and strong sense of responsibility have made me an excellent proofreader and evaluator. I notice things that other people miss, and that’s a real advantage with work. It’s made me a reliable freelancer in general, as I always abide by deadlines and due dates. And it’s helped with my writing, because writing is just a series of patterns that you mix and match to create new things. I communicate better in writing than by speaking, so being a writer is a great career option for me. On the other hand, being autistic has made it hard for me to work in a 9-5 job in a traditional office setting. I’ve done it before, but I’ve always been miserable after the initial novelty has worn off. I’m much more comfortable working at home and being able to set my own schedule. This allows me more control over my environment and provides more flexibility, but also means I have a lot more financial uncertainty. So, as with everything, there are tradeoffs. With my hobbies, I think being autistic has only been a help. My autistic traits are completely tied into my love of logic puzzles. The puzzles just make sense, and my brain is able to make intuitive leaps, which makes me very good at them. I enjoy putting together LEGO kits according to instructions. I get small bits of glee whenever I arrange the pieces just as they are shown in the diagram, especially when there is technically the option to do it differently. I love crafts because I’m able to make something by following a set of instructions, which is enjoyable for me, but there is still plenty of room for creativity.

I think my curiosity about where I come from and about the wider world only support my enjoyment of and choice of hobbies. One thing I spend a fair amount of time doing (if you want to call it a hobby, you can) is interacting online with people I’m friends or acquaintances with. I’m in a number of social groups online where we have at least one thing in common, and it really helps me feel connected to the world, helps me find people to relate to, and restores some of my faith in humanity. I think a fair number of people I interact with are undiagnosed neurodivergent folk, honestly, but everyone has their own journey. This socializing “hobby” has not only partially satisfied my need for social interaction, it’s opened doors for me for work and other opportunities. What I’m driven to do anyway (socialize online) has been an advantage in so many areas. What kinds of changes or accommodations do you make in your life to allow you to be successful? I work at home. I can’t and don’t work full-time. I keep my schedule really flexible, so I can do things in the order that works for me on a given day. Much of my social network is online, so I can enjoy it in whatever doses I’m up for, and connect with people all over the country and the world. (Though I do sometimes feel starved for in-person interactions, so I do have some local friends.) I make sure certain foods are always available, especially for my breakfasts. I have morning and evening routines that help me feel ready for the day or ready for bed. Most days, I have taken to doing meditations that help keep my stress level down. I communicate very openly with my partner, Rory, and he is very good at supporting me in my needs (and I in his). I’ve tailored most aspects of my life to support my particular needs, whether autistic needs or otherwise. My needs have rarely fit into the molds set down by neurotypical society, and I feel lucky to have figured out so many of them. I do wish I’d had the vocabulary to explain at an earlier age, but it all got figured out in the end. Have you experienced discrimination or bullying because of your autism or autistic traits? In elementary school and junior high, I was bullied relentlessly. Throughout, from 3rd grade through 8th grade, a few people at school made my life miserable. I looked different from other people, acted differently, and got good grades, and all of that made me an easy target for the cruelty of other kids, which made my intense anxiety even worse. High school was better, since I went to a nerdy school, but there were still some microaggressions even then, such as receiving disparaging looks and hearing insulting comments behind my back. But it wasn’t as bad as earlier, and I had some great friends in high school. As an adult, I’ve come to value and appreciate all the more those who made and make me feel welcome and accepted. Continued on next page

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A Day in the Life of Jenny Bristol, continued from page 18 I avoid some kinds of discrimination by masking, but I can’t keep it up for very long. Thus, long interactions are sometimes a challenge to get through, and sometimes people can tell. I can’t say I’ve experienced blatant bullying as an adult, other than in some different forms that occurred in past relationships, but it’s a little murkier when thinking about discrimination. What advice would you give a young or teenage autistic person to help them live their best life, or what advice would you give an autistic adult to help them feel supported in their continuing journey? My advice is for people of all ages. Find your people. Find people who seem to be a bit like you, with whom you’re comfortable. Find community, or create it yourself. And then spend time together doing things you love, either jointly or in parallel. Compare notes. Validate each other. Build each other up. Listen to your instincts. What your gut tells you what you like, what you don’t like, what makes you happy, what makes you uncomfortable... listen to it and believe it. Don’t let people dissuade you. Don’t let people tell you that you’re wrong about yourself or that your needs aren’t important or valid. Just because they don’t match someone else’s needs doesn’t mean they aren’t real. Follow your interests and see where they lead. Getting better at or more knowledgeable about the things you love can lead to a career, or just a really satisfying hobby. It’s never a waste of time. 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? Figure out how your child communicates (it won’t necessarily be with words, especially early on), how they find and express joy, where they struggle. And then pay attention to what they actually communicate. Tend to their needs. Encourage their joys and interests. And support them through struggles. Help them understand themselves better by assisting them in figuring out the vocabulary to express their experience. And definitely don’t try to make them conform to arbitrary “normal” child behavior—as long as everyone is safe, there is no right or wrong way to play. Your child is an individual, and deserves to grow up to be the best “them” that they can be. Your child is separate from you, and will have different needs and preferences, all of which are completely valid. Don’t dismiss their expressed needs and preferences. Study them closely for glimpses into their special interests and talents. Then encourage (but don’t pressure) them in those areas, as that can help their confidence and help lay the groundwork for their future. Focus on their strengths, not what you might perceive as deficiencies. Developing their strengths might help them carve out their own place in the world. Behavior is communication. Don’t punish behavior you deem unacceptable. Instead, figure out what the reason for the behavior is, and address that. Chances are, there is some need that is not being met.

By being there for your child when they are young, they will still come to you when they’re older. Be the safe place for your child. Also, give your child plenty of opportunities for finding friends who share their interests or particular needs—if they are interested. Some autistic kids prefer to be alone, so respect that as well. But provide options and see what sticks. What was one piece of advice you received that helped you be comfortable with who you are? There hasn’t really been one single piece of advice. Mostly it’s been my own self-study. But I could point to the sentence, “Your needs are valid.” I probably first heard it from my partner, Rory. That unqualified sentence validates everyone’s experience, including my own. My needs may be unusual or “weird” to some people, but they are valid, and that’s what I always come back to when I feel like a burden to anyone. Also, surrounding myself with people who care about me and accept (and often celebrate) me for who I am—especially my mom, my partner, and my children—has helped me feel comfortable with and about myself. As I grew up, my mom often had no idea what to do with me or how to best support me, but she tried her very best, and loved and accepted me the whole time. That alone gave me a solid foundation of self-worth. I have come to learn about, understand, and value all the parts of myself that have been at various times called weird, annoying, or even broken. I am not broken; I am whole. I live my life on my own terms now. And I’ve been able to set that example for those around me. If you could go back in time, what would you tell your younger, undiagnosed self? I’d tell myself that all those kids who bullied me were struggling with something themselves. That they probably lashed out because they were being bullied at home. I would try to help my younger self feel bad for them instead of scared of them. I would reassure myself that all the ways in which I was weird, there were other people out there that were also weird like that. And that all those weird things I did and liked, they were totally valid and normal. That I would find people with whom I could relate and who would love me BECAUSE I am the way that I am. And that everything I was going through would help me be a good mother, and that being a mother was everything I’d ever thought or hoped. In what areas have you found that being autistic has been an advantage in your work? Being able to notice details, patterns, and connections that others miss has helped me quite a lot. Having varied strengths and interests, while keeping me from being able to go too deeply in any one field, has allowed me to do work in a variety of areas. Also, my empathy has allowed me to manage and teach others, and see things from others’ perspectives. My people-pleasing nature and regular need to be social (even online), as well as my reputation for complete honesty Continued on page 20 www.spectrumlife.org

A Day in the Life of Jenny Bristol, continued from page 19 and reliability, has helped me create an extensive network of friends and acquaintances, which has opened work doors for me, both for opportunities when I’d been looking for them, and for job offers that just showed up in my inbox.

What are the best ways for people to connect with you?

What is a misconception about autistic people that you would like to dispel?

Instagram: @jennywrenbristol Threads: @jennywrenbristol Twitter/X: @jennywbristol Facebook: www.facebook.com/jennyw.bristol Mastodon @jennybristol@mastodon.social Bluesky: @jennybristol.bsky.social

That we can’t have successful relationships. We totally can, but some important things need to be in place.

You can find me at my website at www.JennyBristol.com or email me at jenny@jennybristol.com.

First—like with anyone really, autistic or allistic—you need to know yourself really well. Be honest with yourself about who you are, what you’re all about, where your strengths and challenges lie. So many autistic people have been gaslit their whole lives about who they are and what they need that this one is tricky for some. Next, you need a compatible partner. Someone who aligns with your priorities in a relationship, and someone for whom you align with their priorities. This assumes you have enough knowledge or experience to know what your priorities are, and know enough about yourself to know what you have to offer others.

My partner and I are both autistic, and we both deal with various mental health issues. Yet we have a very successful relationship and tick all those boxes above. It’s been 11 years and counting now. It’s been over five years since you figured out you were autistic. How has your understanding of yourself changed in that time? I am able to see myself in the context of being autistic, seeing myself as a zebra rather than a broken horse, as they say. I no longer hold myself to neurotypical standards (or I try not to, at least—it’s a work in progress). Though it’s slowed down a bit, I’m still reprocessing parts of my life from childhood onward. I’m having less frequent epiphanies, and am owning the autistic label more and more. I’m discovering more autistic people who are talking about their experiences and normalizing being autistic, including people who appear to have a “normal” life from the outside. And I’m learning that the accommodations I make for myself aren’t all that unusual in the autistic community. And that those who achieve “more” than I’m achieving often don’t have kids, or at least aren’t a primary caregiver. I’m no longer having issue with the fact that I don’t like certain things that I used to think I “should.” I have become less apologetic for the way I am, and instead just clearly express the needs that I have. Overall, knowing I’m autistic has been really helpful in thinking out my next steps in life, to plan and create a life and lifestyle that suits my needs and my wants, not trying to shoehorn myself into a more “traditional” life that would be too stressful for me to survive, let alone thrive.

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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.

Illustrations by Rebecca Burgess

Then, it takes constant work and communication and flexibility, and being willing to take responsibility for all of your words and actions.

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

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

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LIFESPAN

A Day in the Life of Rebecca Burgess Thoughtfully Creative Illustrator and Author By Jenny Bristol, Illustrations by Rebecca Burgess Editor’s Note: Rebecca Burgess was one of 13 autistic adults interviewed in the anthology “Actually Autistic Adults in the Real World - A Day in Our Lives” published by Geek Club Books (GCB). When GCB closed their nonprofit doors in 2021, Autism Empowerment collaborated with illustrator Rebecca Burgess, writer Jenny Bristol, and Jodi Murphy from GCB to continue the series through Spectrum Life Magazine. As it has been years since Rebecca’s original interview, we are pleased to present a fresh update so you can get to know the creative illustrator behind this powerful series.

How has your understanding of yourself and your autistic traits changed over time? I think over time the biggest change in me has been unwrapping various unhealthy behaviors that have been learned when trying to live a “neurotypical” (“NT”) life. The more I understand myself, the more aware I am of what is a “normal” level of comfort/happiness and what isn’t. I see more that I’ve been putting myself through unnecessary stress/pain for no reason, which others don’t normally go through. And I see that I’m trying to appease people when I don’t need to, and not voice what I need enough. If you could go back in time, what would you tell your younger, undiagnosed self? Don’t feel ashamed about getting upset over little things that don’t upset others! You’re not being over the top, and you don’t need to feel embarrassed or suppress your very valid feelings. If nothing else, I wish I could give my younger self the vocabulary to describe inner experiences that were extremely misinterpreted back then. Which kinds of activities give you mental or emotional energy? Which kinds sap your energy? Where do you lose time and get lost in the moment? Which activities are draining but still worth doing? Quiet alone time spent drawing, reading, and walking still seems to energize me the most. I’ve taken up show choir recently and have found singing in a group is also energizing for me!

Rebecca Burgess is a UK-based artist and author who spends much of their time illustrating and sometimes writing books and stories, usually including autistic characters and themes. They have illustrated all of the interviews in this Day in the Life series, and have written and illustrated books on asexuality and on queer Regency romance, as well as illustrated several other books, projects, articles, and stories. Their artistic style is fun and positive, bringing smiles to readers’ faces and surprises on every page. Additionally, Rebecca has worked hard to carefully organize their schedule in a way that best meets their needs. Successfully balancing social needs, quiet alone time, and their relationship with their partner is important to them. You can check out some of Rebecca’s work on their website [https://www.rebeccaburgess.co.uk/] as well as on their Instagram account [https://www.instagram.com/theorahart/].

Social activity saps me the most, but surprisingly, not so much real-life socializing nowadays—it’s more replying to the gazillion different text messages I always have! This is probably because real-life socializing is planned, and I’ve set aside time to do it. In comparison, text messages follow you everywhere and (depending on the message or who’s messaging) feel like a demand to socialize on someone else’s time. Drawing stories is where I get most lost in the moment, but in a nice way. It just takes over everything and even if I’m forced to stop, my mind is still daydreaming about it. Seeing my friends in the pub is tiring but I’ll always make time for it! I couldn’t do this more than once every couple of weeks, because pubs are very noisy. But most of my friends like this to be how we hang out, and I feel very happy after seeing people. Continued on page 24

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A Day in the Life of Rebecca Burgess, continued from page 22 What is a misconception about autistic people that you would like to dispel? I think the “not understanding feelings” and “no imagination” are the two that seem the most inaccurate and make an impact in how people interact with me. Both are normally the polar opposite for most autistic people I know personally (although I know it’s different for everyone), and the misconception has led to people: leaving me out of conversations around feelings/connecting because they think I won’t be interested or understand, and people dismissing my experiences because they believe a creative person such as myself isn’t “really” autistic. Our last interview was before the pandemic, and most people’s lives have changed somewhat. How has the pandemic been an added struggle for you? Has it given you any additional freedoms? How has your day-to-day work and personal life changed in the last few years? I think the pandemic added some social insecurities to my life, but post-pandemic rather than during. I socially got along pretty well during the pandemic, because most people had to plan ahead a lot more with socializing (to accommodate small groups and limited space in venues), and, during lockdowns, plan ahead so that groups could meet online at the same time. This created a style of socializing that works really well for me. I like to plan weeks ahead; I like having the same one day each week to set aside for friends. I like the consistency and not worrying about losing touch with people each time I turn down last-minute invites. But now things are mostly back to how they were before. I don’t see people as often as I did, and struggle with the usual worries of losing touch. But in a way, even more now, because for two years I had a little taste of how it would be if everyone socialized in the way that suits me! While you’re an illustrator, you’re also an author. Since our last interview, you’ve published a number of books, some as just illustrator, and some as both author and illustrator. How has your experience been publishing books? Publishing is a tricky business! I’m constantly changing my mind about whether I want to continue in it or not. Financially speaking, it doesn’t pay much versus the work you have to put in. Mentally speaking, earning money through your own stories and art means you end up linking your creative worth with commercial success, which isn’t healthy and gives you unrealistic views of how good your work is (because how much money publishers or shops put into advertising affects success, rather than how good your work is). But the upside is I get to do what I love every day, and can express myself to a much larger audience. I get messages at least once a week from readers telling me how much one of my books means to them, and I wouldn’t have that without the help of publishers. I think I like self-publishing best— although you don’t reach as many people, you get more control and the same amount of fun and satisfaction.

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What has it been like doing both the writing and illustrating for books? How is that different from when you illustrate someone else’s writing? I like both in different ways. I have more drive and passion to illustrate my own stories (because I’m drawing EXACTLY the kind of story I want to see). But writing takes up so much mental energy. Illustrating someone else’s work is much easier and more intuitive. Writing and drawing are both like solving problems, but in totally different ways. How did The Pauper’s Prince come about? You’ve shared it serially for free on social media, and then funded print copies of the first few volumes on Kickstarter. Because it seems like a passion project, does it hold a more special place in your heart than other projects? I’ve had a vague idea of doing something like Pauper’s Prince for ten years or so, because I thought a Regency drama would be a fun way to explore the social difficulties in autism (since Regency dramas are all about people’s social lives). Then I made a short comic in 2020 exploring the idea a little bit, and liked the characters enough that I decided to make a longer version. I think the comic has accidentally become a passion project because I wanted this comic to be just for me and only include elements I enjoy. As a romance, I put into it most of my personal romantic experiences and based the two main characters on myself and my partner. So I guess in that way, it’s become more special too! Have you seen any progress over the past few years in society as a whole about understanding and accepting asexuality? Yes! When I was working on my book about asexuality, there were maybe three other books published at the time, but that has majorly blown up since then! And it’s great to see loads of fictional books alongside nonfiction too. It seems to be in most people’s vocabulary now, and featured in a few more TV series. I have a lot of interactions that make me feel that, although people know asexuality exists, there still isn’t very much understanding about what it entails or the impact our culture has on ace people. But considering how far we’ve come in a short amount of time, I’m confident we’ll continue to make lots of progress. What are the best ways for people to connect with you? I feel my Linktree is the best thing to share, since it lists all the various places I am and I can update it as I add new places, now that social media is changing hehe :) https://linktr.ee/Theorah 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 Continued on next page

A Day in the Life of Rebecca Burgess, continued from page 24

Illustrations by Rebecca Burgess

the best present of all is being home for the holidays.

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recreation

IN THIS SECTION Hoop.Camp .................................................................................................. 27 Ask Spectrum Life: Holiday Caroling ........................................... 32

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Photo courtesy of Steve Garrity

INCLUSIVE WAYS TO HAVE FUN

RECREATION

hoop.CAMP 30 Years of Unified Sports and Inclusion By John Krejcha I really had a choice. (Some might say it’s a calling.) I saw the need to include those with differing needs in a meaningful sport event that’s a little bit more competitive and that caters to everyone, one where everyone can move at their own pace, and have success. It sounds like this was the beginning of your unified sports model? In the Pacific Northwest, we are accustomed to wet weather from fall to spring, which often makes it a challenge to find fun recreational options that people in our community want to participate in actively. Previously, Spectrum Life has featured articles about different types of adaptive and inclusive sports programs like baseball or soccer. Now, we have the privilege of sharing Hoop.Camp, a unified basketball extravaganza for youth and adults of all abilities. Their nonprofit is celebrating its 30th anniversary in 2023. Recently, we connected with founder and Camp Director Steve Garrity to learn how Hoop.Camp champions the “unified” model of inclusion in basketball and in life. Hi Steve! Thanks for connecting! Please tell our readers a little about yourself. I grew up in Oregon, playing sports my whole life. I played basketball in college, although my first love was football. I then had a short professional basketball career playing some time in Europe and the United States. I am married to my wife Lisa, and we have four kids. When I am not on the hardwood at Hoop.Camp or serving as basketball director for Sunset Athletic Club, you can find me working at Waterhouse Motors, a full-service auto dealership in Hillsboro, OR, where I am the owner. Please share with us about Hoop.Camp and its genesis story. After a rather uneventful professional basketball career, I realized how lucky I was, and I noticed that there were not a lot of sports options for adults and children with differing or special health needs. My mother always told me, “Where much is given, much is expected and required.” I always wondered why I was born the way I was, and other people were born the way they were. The light bulb came on early for me, and I’ve always sought after people who had physical and mental challenges. Everywhere I go, I get asked by the media and others why I started Hoop.Camp. It’s a really good question! I don’t think

In 1994, almost 30 years ago, at our first camp, we introduced and were one of the pioneers of the concept of unified sports. That’s when people with and without disabilities participate together with their peers. Many of our athletes have a wide range of developmental delays, such as intellectual impairment, Autism, Down syndrome, Angelman syndrome, Fetal alcohol syndrome, and other kinds of cognitive delays. Many have a combination of conditions. We see unified sports as a common format today but it really didn’t exist 30 years ago. At the time, I had parents with neurotypical children who were nervous and did not understand disabilities. They didn’t want their children to ‘catch’ autism or Down syndrome. Some parents of children with special health needs were also nervous because they thought their children might break! Who is Hoop.Camp for? Hoop.Camp is for all adults and children with special and additional needs, those with autism of all levels, those with cognitive and mental delays, as well as unified athletes and sports-minded volunteers. We disguise ourselves as a sports camp, but it is a lot more about equal opportunity, inclusion, accountability, and responsibility. We are about job placement and independent living as well as mental, social, physical, and emotional health. I’ve discovered that we help build confidence and oftentimes give respite time to families and caretakers. Hoop.Camp is a unified basketball extravaganza. You know it’s very interesting that in the last couple years we’ve heard a lot about inclusion and diversity. That is a gospel that we have been preaching for 30 years. It was a message that was not always well received. Inclusive and diverse are words that describe us as well in many aspects. We have athletes with all types of abilities that come from all kinds of walks of life and backgrounds, many with significant unique abilities and challenges. Continued on page 28 www.spectrumlife.org 27

Hoop.Camp, continued from page 27

Our volunteer base is just as diverse. From time to time through a grant request, someone asks us about specifics regarding our social diversity. And I tell them (and I need to word this correctly), we don’t care! What I mean by that is, we don’t ask if people go to synagogue, chapel, mosque, cathedral, or to the mountaintop. It doesn’t matter to us. We don’t ask people what or who they identify as, how much money they make, what orientation they are, because none of that matters. All are welcome. We are not a political organization. Our organization started because of love of our neighbors, which is everyone. Your domain suffix is clever! How did you come up with the Hoop.Camp name? It’s not very dynamic. I was just lazy. It’s a little bit deceiving too because we also do soccer and football. We offer a football camp with the University of Oregon after the season is over. What does a Hoop.Camp look like? A typical format of one of our events is 3 hours to 3 days of thrilling games, exciting contests, and a lot of fun in the fundamentals of sports. We typically divide participants into teams of similar abilities and ages. We go through fundamental stations and then have team and individual games and contests. It’s not unusual for things to get a little competitive and participants to get a little chippy with each other. I like that part; it means they care! However for the most part, it’s a lot more about recreation than the competitive element. Each event concludes with an elaborate award ceremony, followed by pizza. Everyone gets a camp T-shirt, a gift bag, and a variety of prizes that range from shoes to athletic bags and apparel. Also in our gift bag, everyone gets a dental hygiene kit and a whole bunch of unhealthy snacks—high calorie and low nutritional value. It’s also not unusual for everyone to receive a basketball, soccer ball, or football for participating. How much do the events cost? It really depends on the length of the event. There is no cost for some events, but the cost typically ranges between $25 and $70. We do not turn away anyone for an inability to pay; we have no formal process. People are just on the honor system. We are very unique. We are a 501(c)(3) nonprofit organization, however, we have no paid staff. Everyone from our Board of Directors to me as the Executive Director is a volunteer, including coaches and staff. All funds raised go directly to our events and to support our athletes. Where do Hoop.Camp activities and events take place? We host a Monday night drop-in All-Star basketball night from 7:00 p.m. until 8:30 p.m. at the Hidden Creek Community Center in Hillsboro, OR.

Currently, we run our camps in many cities in the United States and Mexico. We will have hosted over 50 events in 2023, and we are expanding each year. Many of our partners are colleges and athletic programs like Portland State University, Idaho State University, Brigham Young University, University of Nevada, Las Vegas, Montana State University, Oregon State University, Grand Canyon University, and the University of Alaska in Anchorage. We have done events with the Utah Jazz and have a camp planned in January with the head coach of the Miami Heat, Erik Spoelstra. Do you or any of your volunteers have a personal connection to someone on the autism spectrum or with other disabilities? Well, when I started it, the answer was no, not that I knew of. However, now the majority of my friends and the majority of my close friends are individuals that have autism of various degrees on the spectrum or have special health needs or disabilities of some kind. And of course, many of our volunteers have siblings who are autistic. I think it would be very difficult to function in today’s society without knowing people on the autism spectrum. I have learned so much more from my participants than I have ever given. I have an incredibly close connection to autistic individuals. I have a natural ability, especially when I see an individual struggling in public with an autistic-related episode; I have an understanding and ability to help. I feel very comfortable in that world. What is one of the biggest challenges Hoop.Camp faces? I think one of the biggest frustrations is that some people just don’t get it. I’m speaking to many of my high-level athletes that played collegiately, and in college or even professionally. I have a group of them that I call my “someday” friends, meaning every time I talk to them about coming to help, they always say, “someday they’re going to do it when they have more time.” I have to remind them that we all have the same time in the day. Many of them have been blessed with such God-gifted size and athletic ability that they have an obligation to donate their time in a sport that has given them so much. There is a famous saying in the musical The Music Man, and without going into the details and paraphrasing, it basically says, “if you save up enough tomorrows, you end up with a bunch of empty yesterdays.” I believe in the philosophy that opportunities to serve others usually do not happen in the most convenient times. Oftentimes, opportunities to serve present themselves in the most inconvenient times. That’s where we all have to pump the brakes a little bit, and understand where much is given, much is required, and prioritize service, lifting where we stand. This means not

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Photos courtesy of Hoop.Camp

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Photos courtesy of Hoop.Camp

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Hoop.Camp, continued from page 28 waiting for the perfect time to do what we can when we can do it. It’s a matter of good, better, and best. How do you want to spend your time? What are your future goals for Hoop.Camp? Our primary goal is expansion. We are in a lot of different states, but we want to expand to more places. We also want to do more with soccer and more with football. Please share a story or two about individuals or families you have helped and growth you’ve seen in your clients who are autistic. One thing that I often hear from families is that for participants that are extra sensitive to noise, it doesn’t seem to bother them nearly as much at our camps. Also, parents have commented to me over and over again that, with a child who may be extra sensitive to physical touch, that’s often not an issue at our events. I’ve had hugs from participants where parents have told me that their son had not hugged them in five years. There are so many amazing families. I think of a couple in particular; each of them have three kids that have significant challenges with autism, and I just don’t know how the parents do it. We really try to be a cog in the wheel to help. I think it makes a huge difference if you have some community support, some faith-based support, neighbor support, immediate family support, extended family support, professional support, and even some Hoop.Camp support. If all of us can lock arms and help a little bit, we can make a huge difference.

We look forward to the mission continuing! 2023 is our 30th year. We’ve served thousands and thousands of athletes of all ages, all ability levels, and with a wide spectrum of health needs. Our youngest started at about five years old and our oldest has been 73. How can our readers contact Hoop.Camp to get involved or learn more? It is easy to contact me directly. Phone: (503) 875-8281 Email: Steve@Hoop.Camp Website: www.hoop.camp Facebook: www.facebook.com/Hoop.Camp/ What else is important for Spectrum Life Magazine readers to know? I think the best therapy for depression, for anxiety, for self-loathing, for discouragement, or for sadness is serving others. We live in difficult times, however there’s much to be optimistic about. We all have something challenging we’re dealing with, but service to others makes it a lot easier. When we all link arms together, there is strength in numbers. Love conquers all. There’s no better way of expressing love than when we serve others.

What are some favorite memories you have had over the years? There are way too many touching moments and inspiring memories. One is with Julie Aldous. She passed away from cancer a few years ago. She was a long-time volunteer. She knew absolutely nothing about basketball or sports but she was a regular volunteer who would come help us with registrations, handing out T-shirts, handing out Band-Aids, putting out fires for us, and helping us with lunches. To see individuals like her volunteer is pure selfless service, and the love of others. She was a great example for all of us. The awards ceremony is always something special. Sometimes our trophies are three or four feet high and it’s such a great way to recognize accomplishment. It is amazing to see the looks on parents’ faces as their children are recognized for their accomplishments. One of the things I miss as we’ve gotten bigger is the individual connection. I will have over 100 people participating at some of these events, and it’s nearly impossible for me to give everyone the time that I would like to and the individual one-on-one attention. It’s very important to me that we focus on ministering to others, not just the administration of the event. That’s always a challenge because there’s so much planning that needs to take place behind the scenes. It takes a really good meeting to take the place of no meeting at all! I want to make sure our focus is on serving others.

Johnny “Hoops” 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 on the autism spectrum, he is dyslexic and identifies as a neurodivergent and loving ally.

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RECREATION

Ask Spectrum Life Holiday Caroling the Spectrum Life Way

Dear Spectrum Life Readers, In most issues, Spectrum Life Editor Karen Krejcha answers frequently asked questions about autism-related resources and topics in our community. However, sometimes we mix things up. Two years ago we published our first-ever version of holiday carol parodies in our unique Spectrum Life way. We had been noticing at home in our neurodivergent family of four that the same holiday and Christmas carols tended to repeat themselves over and over again. That wasn’t necessarily a problem since we often enjoy listening to music on a loop. And if a family member doesn’t feel like hearing my husband’s favorite song, I Want A Hippopotamus for Christmas for the 54th time, there are always headphones. Our first version of carols in 2021 included: Deck the Halls with Less Anxiety Sung to the tune of Deck the Halls Thank You for Respecting My Boundaries Sung to the tune of Winter Wonderland

Understanding Starts With You! Sung to the tune of Jingle Bell Rock Please don’t call, please don’t call, please don’t knock, Send me an email, send me a text. It’s not that I’m trying to be mean or rude, Sudden loud noises ruin my mood. Accommodate, accommodate, that would be great. Do it for me and everybody. Accept + Enrich + Inspire + Empower, Embrace your superpower! Day or nighttime, it’s the right time For inclusion and love today. Every person has a mission To make our world a better place. So let’s unite, let’s shine bright, Let’s do it with grace. Acceptance starts at home. You can be a changemaker, yes indeed. Understanding starts with You! Autism Empowerment around our world. Understanding starts with You!

And an instant holiday hit with parents and educators alike: I’m Preparing for the IEP Sung to the tune of I Saw Mommy Kissing Santa Claus To see the original article and song lyrics, visit https://bit.ly/spectrumlifecarols2021

The 12 Days of Inclusion Sung to The 12 Days of Christmas

We thought we’d bring the fun back again this year with two new carol parodies for you to sing, enjoy, and share.

On the first day of school, it was in my IEP: A plan for inclusion, so I would succeed.

Also, be sure to check out our Autism Empowerment Podcast because later in December 2023, we will be doing a holiday podcast where you can hear us sing the songs, discuss this issue, and recap the year. www.AutismEmpowermentPodcast.org

On the second day of inclusion, my school gave to me: Two caring teachers, And a plan for inclusion, so I would succeed.

So without further ado, we present our two latest carols: Understanding Starts With You and The 12 Days of Inclusion.

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On the third day of teaching, my school gave to me: Three support staff, Two caring teachers, And a plan for inclusion, so I would succeed.

Ask Spectrum Life, continued from page 32 On the fourth day of support, my school gave to me: Four adaptive tools, Three support staff, Two caring teachers, And a plan for inclusion, so I would succeed. On the fifth day of adapting, my school gave to me: Five golden hall passes! Four adaptive tools, Three support staff, Two caring teachers, And a plan for inclusion, so I would succeed. On the sixth day of acceptance, my school gave to me: Six sensory spaces, Five golden hall passes! Four adaptive tools, Three support staff, Two caring teachers, And a plan for inclusion, so I would succeed. On the seventh day of accommodations, my school gave to me: Seven strengths unfolding, Six sensory spaces, Five golden hall passes! Four adaptive tools, Three support staff, Two caring teachers, And a plan for inclusion, so I would succeed. On the eighth day of my gifts showing, my school gave to me: Eight tailored programs, Seven strengths unfolding, Six sensory spaces, Five golden hall passes! Four adaptive tools, Three support staff, Two caring teachers, And a plan for inclusion, so I would succeed.

On the eleventh day of empowerment, I began to see: Eleven talents shining, Ten friendships blooming, Nine voices singing, Eight tailored programs, Seven strengths unfolding, Six sensory spaces, Five golden hall passes! Four adaptive tools, Three support staff, Two caring teachers, And a plan for inclusion, so I would succeed. On the twelfth day of inclusion, the world respected me: Twelve doors to the future, Eleven talents shining, Ten friendships blooming, Nine voices singing, Eight tailored programs, Seven strengths unfolding, Six sensory spaces, Five golden hall passes! Four adaptive tools, Three support staff, Two caring teachers, And a plan for inclusion, so I would succeed. Copyright © Karen Krejcha 2023 Ask Spectrum Life will be back answering your questions in 2024, so keep sending them in! Merry Christmas and Happy Holidays!

On the ninth day of neurodiversity, I heard hope begin to ring: Nine voices singing, Eight tailored programs, Seven strengths unfolding, Six sensory spaces, Five golden hall passes! Four adaptive tools, Three support staff, Two caring teachers, And a plan for inclusion, so I would succeed. On the tenth day of connections, my school gave to me: Ten friendships blooming, Nine voices singing, Eight tailored programs, Seven strengths unfolding, Six sensory spaces, Five golden hall passes! Four adaptive tools, Three support staff, Two caring teachers, And a plan for inclusion, so I would succeed.

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“Karoling” Karen Krejcha is co-founder of Autism Empowerment, where she serves as Executive Director and champions a culture of inclusion and collaboration through advocacy, compassion, and storytelling. She is the Editor of Spectrum Life Magazine and host of the Autism Empowerment Podcast. Karen was diagnosed as autistic in her 40s after the autism diagnosis of her two children. She has been married to John for over 31 years and is devoted to promoting acceptance, enrichment, inspiration,and empowerment for all human beings worldwide.

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KNOWLEDGE TO EMPOWER FAMILIES AND INDIVIDUALS

IN THIS SECTION 2023 SW WA Autism Conference Recap.................................................... 35 Autism Around The World.................................................................................40

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EDUCATION

2023 SW WA Autism Conference Recap Reconnecting, Reviving, Rebuilding! By John Krejcha and Karen Krejcha

On Wednesday, November 1st, 2023, over 175 selfadvocates, parents, educators, service providers, and government officials gathered for the 13th Annual Southwest Washington Autism Conference in Centralia, Washington. Hosted by the Lewis County Autism Coalition, this was the first time that conference attendees were back in person since 2019. The theme was Reconnect, Revive, Rebuild. Spectrum Life Magazine staff were excited to attend and participate in the day’s activities. In addition to exhibiting and learning, we also provided moral support as Autism Empowerment co-founder Karen Krejcha stood on stage to present the closing keynote address. It was a powerful day of learning, connecting, and building hope. After the event, we caught up with Nicole Miller, Operations Director, to chat about the day’s success, recap the conference, and learn about all the other great programming the Lewis County Autism Coalition offers for the Southwest Washington Autism community. Hello Nicole! Congratulations on a powerful and inspiring conference! Please tell us a little about yourself and the Lewis County Autism Coalition.

Most of our Board Members have some ties to the autism community. Some are self-advocates on the spectrum, some are parents, some work with children and adults on the spectrum, some are advocates for inclusive hiring and supported employment. How does the SW Washington Autism Conference set itself apart from other conferences? Our Conference is special in that we try to make it beneficial to a wide array of attendees. We’re aware that we are one of few events in the region that is specific to autism, especially outside of health care. We try to provide resources and speakers that are relevant to adult self-advocates, educators, parents, employers, and healthcare professionals like occupational therapists and speech-language pathologists. We are also intentional about including neurodivergent speakers whenever we can. Last year for example, our theme was Growing Through Education and Empowerment, and about half of our speakers were on the spectrum or identified as neurodivergent. For the past few years, the conference has been held virtually. What were some of the challenges going back to an in-person conference, and what were the benefits? Yes, we did virtual events for three years, and this was our first time back in person. We weighed out the pros and cons at length when we started planning, and what it came down to was we wanted to create the sense of community that many feel has been hard to create in virtual spaces. It felt appropriate, given this year’s theme was to Reconnect, Revive, Rebuild.

My name is Nicole Miller and I have been the Operations Director with the Autism Coalition for about two and a half years now. From a young age, I have been passionate about justice and making everyone feel welcome.

We considered a lot of things when planning this event. Location, timing, schedule, topics, resource booths, etc. The thing with taping sessions, or live streaming for that matter, is it takes a lot more resources than many realize. You basically have to have two teams, one manning the in-person elements, and one managing the virtual aspect.

The Lewis County Autism Coalition (LCAC) is a nonprofit located in Lewis County, Washington. LCAC was formed in 2010 as a coalition of community partners and providers. As a Coalition, the group created several programs to help families, caretakers, and providers in the community understand and navigate systems for people with autism.

You have to have people who can manage the tech, troubleshoot issues, manage the different types of attendees, closed-captioning, distribute the class materials and handouts, etc. At the end of the day, we’re a small nonprofit. A conference takes a lot of resources, and we have to be strategic about how we plan the event and stay on budget.

One of the earliest programs was the Southwest Washington Autism Conference! Today, the Coalition provides programs and services throughout the lifespan for neurodivergent self-advocates and their support systems.

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Of course, we were worried about what in-person would be like after many years. That was probably the hardest part of planning: the unknown. Would people come? You can imagine our relief and joy when so many showed up for the event! How many people were in attendance? We had around 175 total attendees for this year’s conference! We had folks from all over Southwest Washington and Puget Sound, from Shelton to Tacoma to Kelso and Vancouver, and of course, throughout Lewis County! What was the demographic makeup of your attendees? In addition to self-advocates, parents, and teachers, we had a handful of clinicians, speech-language pathologists, occupational therapists, paraeducators, and quite a few from Washington Department of Social and Health Services (DSHS), Department of Vocational Rehabilitation (DVR), Developmental Disabilities Administration (DDA), and supported employment agencies like Morningside. How did you come up with this year’s theme: Reconnect, Revive, Rebuild? It came about in our early planning sessions. We always try to pick a theme that feels relevant to what’s happening in the community or the world as a whole. I think for a lot of us, the last couple years have been hard. There’s been a lot of burnout and isolation. A lot of projects or ideas that were in the works had to be tabled when COVID hit and it feels like now is when a lot of us are finally feeling like we can start to re-engage. We wanted a theme that acknowledged that. It’s okay, things haven’t been easy for many of us, and we’re here to build back, perhaps even better than before, our community strength and support. In the opening session, you had Centralia Chief of Police Stacy Denham talk about Project Guardian. What is Project Guardian?

We are so excited about Project Guardian as a new program in our community to help keep loved ones with intellectual/ developmental disabilities, including autism, safe when interacting with police and first responders. Project Guardian is a program originally created by Newport News Police that’s since been modified and adopted in communities all over the states, including the City of Yakima. In Centralia, the program includes a free, voluntary, and confidential database offered and managed by the police department for people living in or expecting to travel to the city. The concept is one that was actually being discussed back in 2018 and 2019 and was in development when COVID hit. Unfortunately, it had to be paused as most individuals involved in the planning were essential workers, but we began revisiting the topic about a year ago, and we’ve been working with Centralia for about that long as well. First responders often don’t know whether or not individuals they encounter have disabilities such as autism because often there aren’t any telltale physical signs. For example, flashing lights on an emergency vehicle might cause a person with autism to become frightened and act out. First responders may not understand why some individuals will not make eye contact with them, keep their fists clenched, or flap their hands. What may seem like a simple interaction with the police could become a very traumatic situation for a person with disabilities, and it could confuse officers without further information. Check with your local police department to see if Project Guardian is in your community. To learn more about what Project Guardian looks like in Centralia, we have provided a link. https://www.cityofcentralia.com/558/Project-Guardian The rest of the day was filled with a great mix of enriching information. How were speakers chosen? What topics were covered? One way that we look for speakers is by looking for topics that our families and communities ask for and then reaching out to potential speakers with a background in that area. For example, we knew that many of our families were looking for information on mental health and autism. Over the years we’ve built up a network of professionals and contacts and we put our feelers out to some of them to see if they were interested or had suggestions for speakers. Others, like our keynote speaker, were recommended to us by some of our community members. We knew we wanted a keynote with lived experience and Karen was a perfect fit for our program! We were thrilled when we reached out and she agreed to speak.

Photo credit: Brittany Voie and Lewis County Autism Coalition

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Speakers and topics at this year’s conference included: • Patty Dean, who is well known in our local community as a mental health provider for neurodivergent clients. Her topic “Eat, Sleep, Play Video Games?: Mental Health and the Autism Spectrum” filled the classroom and was standing room only. https://comfortableconnections.com • Dr. Patti Matestic is someone we’ve engaged with for years, as she was the Director of the University of Washington’s Autism Center and currently works at McChord AFB in the Developmental Family Readiness Center. She presented on the relationship between Autism and Sleep. • Katie McMurray and Lauren Howard from Sensory Tool House explored the eight sensory systems, what sensory seeking and avoidance behavior look like in relation to each, and how to best support regulation. https://sensorytoolhouse.com • Stacy Denham, Jennifer Libby-Jones, and Laura Hanson were part of a panel of local Emergency Responders. They spoke about the new pilot program in Centralia called Project Guardian: a free, voluntary program intended to help keep individuals with intellectual and developmental disabilities safe during police interactions. • Heather Evans from Wise used her expertise to discuss the benefits to both employers and employees in the area of Supported Employment. https://www.gowise.org • Jim Smith, the Transition Coordinator for South Sound Parent to Parent, talked about how to provide a bridge for youth as they exit from the school system. https://www.ssp2p.org • Sarah Young, the Owner and Director of Autism Acres, talked about their family’s story which led to the creation of Autism Acres. https://autismacres.org • A two-part class led by Speech-Language Pathologists Tara Fruechte, Blaire Sellers (Part 1) and Samantha Moody-McWeeney (Part 2) explored Tobii Dynovox and Augmentative and Alternative Communications (AAC). https://us.tobiidynavox.com • Karen Krejcha, Autistic Advocate, Parent, and Co-Founder of Autism Empowerment, presented an inspiring and thought-provoking closing keynote session, Reviving and Thriving: Autism Empowerment For All of Us. https://www.autismempowerment.org Karen felt honored, humbled, and grateful to give the closing keynote. It was a wonderful experience. Why was it important for you to have an autistic keynote speaker? We take the expression “nothing about us without us” to heart at LCAC. It’s our belief as an organization and a board that we cannot advocate for inclusion or acceptance without including those on the spectrum in our programming and all aspects of our work. It’s more than setting an example though, it’s about letting people speak for themselves.

I think it’s easy to see a conference as an academic setting and forget that the topics we are discussing aren’t just theoretical; they have the potential to have a profound impact on people. It is so important to remember who it is we’re here for and have that representation. How many vendors did you have for the resource area and what kind of services were represented? We had around 20 resource tables and vendors! We primarily focused on bringing in other nonprofits and community programs, along with agencies and resources for families. Some of our speakers also hosted tables, like Tobii Dynavox, who did a presentation on Augmentative and Alternative Communications (AAC), and Autism Acres (Rochester, Washington), who shared their story and programming. Autism Empowerment handed out quite a few copies of back issues of Spectrum Life Magazine to new readers. We also had tables from some of our sponsors, such as Amerigroup and Sensory Tool House, LLC. One of the main feedback points from our attendees was how much they appreciated the resources and how many more there are than some people realized. Continued on page 38 www.spectrumlife.org

SW Washington Autism Conference, continued from page 37

Photo credit: Brittany Voie and Lewis County Autism Coalition

Our vendors included: Amerigroup, Autism Acres, Autism Empowerment, Centralia College - Transitional Studies, Choice - ABCD Program, Comfortable Connections, Cornerstone Center for Development, Department of Vocational Rehabilitation (DVR), Developmental Disabilities Administration (DDA), Lewis County Accessible Recreation, Lewis County Autism Coalition - Cultivating Inclusion, Lewis County Parent to Parent & In-Tot Developmental Center, Lewis County Mentorship Program, NAMI Lewis County, Providence Abuse Intervention Center, Sensory Tool House, LLC, Spectrum Life Magazine, Tobii Dynavox, University of Washington Readi Lab and Worksource. You also had a dedicated Sensory Recovery Area which we took advantage of ourselves! Who put this great area together? The Sensory Recovery Area was offered by Sensory Tool House, LLC, out of Lacey, Washington. Katie McMurray, Founder and C.E.O., and Lauren Howard, Director of Operations of Sensory Tool House, are incredible community partners and were consulted on various aspects of this year’s conference planning (as well as being one of our presenters!) While we always try to provide accommodation and make our attendees feel comfortable, the Sensory Recovery Area further elevated our efforts and provided a greater level of comfort and commitment to inclusion.

Editor’s Note: Sensory Tool House was also the cover story of our Fall 2023 issue. View their story online at https://bit.ly/sensorytoolhouse. Who are some of the people that should be recognized for putting on the conference? Our conference committee and board members play a huge role in helping to put on the conference. This year, in particular, we can thank Megan Shepherd, Michelle Whitlow, and Lisa Davis for their leadership and counsel. Our Board Chairperson wanted to personally give me (Nicole Miller) a shout out as the Operations Director, and who did much of the planning and producing for this year’s event. Outside of the conference, what are some of the other programs of the LCAC? Thank you so much for asking this as we do so much more outside of this conference. We offer programs throughout the lifespan. One of our earliest programs is the School-Medical Autism Review Team (SMART), which offers autism assessments for children in Lewis County through our program host, Northwest Pediatric Center. SMART has since been replicated in numerous counties and cities in Washington State and beyond. For many rural communities, it is the only way to have a child screened locally and can drastically reduce wait times to be seen compared to larger facilities. Continued on next page

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SW Washington Autism Conference, continued from page 38

Other programs include a weekly Sensory Summer Day Camp for children ages 4 – 12 that we host in the summer months, and our Neurodiverse Connections program, which hosts monthly social events for neurodivergent adults along with a moderated online chat. We also have Neurodiverse Teens, which meets once a month online, and our sister program, Cultivating Inclusion Lewis County. Cultivating Inclusion was created in response to expanding our work to support folks with all types of intellectual and developmental disabilities. Through Cultivating Inclusion, we have been able to do programs such as Teal Pumpkin, an inclusive Halloween event, and our annual inclusion celebration, where we celebrate nominees from the community who embody what it is to be inclusive. Last year, we were able to fund a book study for teachers in Toledo, WA on Universal Design for Learning (UDL), buy five Rifton chairs for students in Chehalis School District to provide neurovestibular support to students, and purchase soundproofing mats for Boys & Girls Club of Lewis County for their Pac Athletic Center – making it more sensory friendly and accessible to all attendees.

Jolly John Krejcha is co-founder of Autism Empowerment, where he serves as Program Director and coordinates Community Outreach. 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 on the autism spectrum, he is dyslexic and identifies as a neurodivergent and loving ally.

We were also able to host our first-ever career fair for people with disabilities and differences in partnership with the Economic Alliance of Lewis County. The Career Fair was a huge success, with over 125 participants and more than 20 resources and employers! How can people get involved with LCAC’s activities? Folks can follow the Lewis County Autism Coalition on Facebook, Instagram, or LinkedIn. They can also visit our website to sign up for email updates. Email: info@lcautism.org Website: www.lcautism.org Facebook: www.facebook.com/lewiscountyautismcoalition/ Instagram: @lewiscountyautismcoalition LinkedIn: www.linkedin.com/company/lewis-county-autism-coalition/ What are your future plans for the LCAC and the next annual convention? In the future, we hope to bring in more speakers and topics and to continue to reach a wider audience. More and more people are getting diagnosed compared to previous years, and while it’s a good thing that awareness and screening have improved, it also means that more and more individuals and families are learning to navigate systems and services. Our hope is to continue to help bridge that divide and advocate for continued inclusion and acceptance.

Festive Karen Krejcha is co-founder of Autism Empowerment, where she serves as Executive Director and champions a culture of inclusion and collaboration through advocacy, compassion, and storytelling. She is the Editor of Spectrum Life Magazine and host of the Autism Empowerment Podcast. Karen was diagnosed as autistic in her 40s after the autism diagnosis of her two children. She has been married to John for over 31 years and is devoted to promoting acceptance, enrichment, inspiration, and empowerment for all human beings worldwide.

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EDUCATION

Autism Around the World Zoom Autism Magazine Goes Global By Karen Krejcha publication is digital, each issue has its own theme and guest editor, and the publication has a national and international reach. It’s that international reach we got to thinking about last summer when coming up with a theme and guest editor for our current Zoom Autism issue. How could we educate others about autistic life worldwide? How could we showcase some of the beauty and gifts of autism around the globe? Wouldn’t it be interesting if we could bring together autistic adults, parents, and professionals from different countries around the world and share their stories and perspectives about what autism support and services looked like where they lived? Conner has been to a few countries in his life and shares, “I have always wondered what life is like and how to help those with autism and other disabilities in other countries. Everyone in each country has a different but unique life with autism, but they do so many great things in so many different ways. Each of us has strengths to overcome obstacles in life. There’s so much to share that it’s time we’re aware.” The idea for Issue 20: Autism Around the World was born and Dr. Stephen Shore was invited to be the Guest Editor. A good friend of the Cummings family who had previously been on the cover of Zoom Autism Issue 16: Traveling the Spectrum Way, Dr. Shore is a world-renowned autistic professor and author who has traveled to over 50 countries, presenting at autism conferences to thousands of people. Ever since I was a little girl, I’ve had a desire to explore the world. In the 1970s my parents used to have a subscription to National Geographic and as I’d look through the colorful pages of each issue, I’d dream of what it would be like to roam with the white tigers in Asia or go hopping with the wallabies in Australia.

Dr. Shore reached out to a number of his worldwide contacts to write stories, and then our Autism Empowerment content creation team added in additional features, collaborating with graphic designer Dave Born to create a colorful, interesting, and meaningful 68-page issue.

I was also very curious about the people. As I never quite felt like I fit in among my classmates, perhaps there were kids like me in another culture. Maybe we would one day even be friends and could do good in the world together. As it turns out, a dear friend of mine, Conner Cummings felt a similar way. Conner is one of the founders of Zoom Autism Magazine and appeared on the cover of Spectrum Life in Spring 2022 when we did a story about Conner and the amazing advocacy work he and his mom Sharon have done through Zoom Autism, the state legislature in Virginia, and a variety of nonprofit organizations. Zoom Autism Magazine became a nonprofit program of Autism Empowerment in 2022 and a sister publication to Spectrum Life. A few key things distinguishing the publication are: the

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Dr. Shore shares in his Letter from the Editor, “In this issue of Zoom, you will find stories from autistic adults, parents, therapists, and professionals, each sharing from their unique lens what autism services and support are like in their country and what work is being done to improve daily lives. We talked to native people and those who have moved to new cultures, asking what issues currently affect autistic people where they live.” Continued on next page

Autism Around the World, continued from page 40

Global perspectives represented include: • Azerbaijan - Bill Peters • Belgium - Mario Devis • Canada - Karen Simmons • India - Manish Samnani • Peru - Dr. Liliana Mayo • Serbia/USA - Niko Boskovic • Ukraine - Iryna Sergiyenko • United States (Military Travel) - Scott Campbell Other features within this Autism Around the World issue include:

AZERBAIJAN

BELGIUM

• Amazing Autistic Artists Around the World 24 artists, musicians and performers across 6 continents • Cummings & Goings - Reflections from Conner Cummings • Global Autism Organizations Directory Connect with autism and autistic-led organizations in over 150 countries.

CANADA

• Globetrotting Advice and Travel Tips from Dr. Stephen Shore • Letter from the Editor • Resources for Military Families This is one of Conner’s favorite issues and mine too. As a huge Disney fan, Conner designed the cover using an idea from Epcot. He also tied in a theme with a classic Disney song. “Together, we from every nation of the world can learn from each other. We can help each other and work as a team. Together, we can make the biggest community for people with disabilities ever. Though the mountains divide and the oceans are wide, It’s a Small World After All!”

INDIA

PERU

The issue is now live online. www.spectrumlife.org/autismaroundtheworld For past issues #1-19, visit: www.ZoomAutism.org or www.spectrumlife.org/zoomautism Moving forward into 2024, Autism Empowerment, Spectrum Life Magazine and Zoom Autism Magazine are looking forward to sharing more reader stories in our publications, in our blogs, in our podcasts, and through video and film. We’ve even received a grant in collaboration with Brian Tashima and Second Player Score to produce a short Vancouver-based film starring neurodivergent talent called Hold My Beer. We believe that everybody has a story worth sharing!

SERBIA

UKRAINE

We are also starting to outline a noteworthy Zoom Autism issue for 2024 which has a theme of showcasing talent from around the United States and internationally. Look forward to features with some of the artists you’ll meet in Autism Around the World and so much more! If you or someone you love might like to be featured or have a story to share, please email zoom@autismempowerment.org.

UNITED STATES

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health & wellness DEVELOPING A SENSE OF WELL-BEING AND WHOLENESS

IN THIS SECTION #AskingAutistics - High Functioning?........................................................................................44 A Fitness Approach for Every Body ........................................................................................ 48

HEALTH + WELLNESS

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HEALTH + WELLNESS

#AskingAutistics You MUST be High Functioning By Lyric Rivera, NeuroDivergent Rebel People feel is a hate group against Autistics). Still, I didn’t find any other firsthand Autistic experiences in my search. Though I had related to reading firsthand Autistic experiences more than I’d ever related to anything my entire life, when I read the medical language surrounding Autism (and how non-autistics described us), I couldn’t see myself in the non-autistic descriptions — so I shelved the idea that I “might” be Autistic for over six months (as my health continued to deteriorate from not having my needs met). By the time I stumbled onto that Temple Grandin book, I was already in the middle of a mental and physical health crisis, and after multiple trips to my general practitioner for exams and bloodwork with no answers, I was beginning to lose faith in my doctor’s ability to diagnose what was wrong with me. Still, since I didn’t fit some of the most prominent autism stereotypes, I withheld mentioning Autism to my doctor at first. Eventually, my health continued to deteriorate, and my doctor had no answers as to why I kept getting violently ill, wasting away (down to 95 lbs — an unhealthy weight for my age and height), and having regular migraines and stomach episodes.

Photo courtesy of Lyric Rivera

I was pretty sure I was Autistic even before I was diagnosed Autistic, but at the same time, I was also filled with doubts (imposter syndrome will do that to you). The first time I heard about Autism from an Autistic Person was in a Temple Grandin book about animal behavior. I don’t even remember the title of the book at this point. It wasn’t a book about Autism, but in the book, Temple spoke about some of her Autistic experiences and explained how her Autistic brain (and visual thinking) helped her to understand animals better. Back then, I was still in love with behaviorism and was soaking up as many behaviorism books as I could find (for both animals AND PEOPLE) because I used many of the tools in my work as a dog trainer (a job I gave up, soon after my Autism was confirmed). I remember being in a state of shock and disbelief reading Temple’s words when Temple explained her Autistic experiences because I felt as if Temple was also describing my own experiences - but I wasn’t Autistic. WAS I???? Looking for more information, I googled Autism. I found a bunch of Autism Parent blogs (where parents complained about how horrible it was to be a parent to an Autistic child) and a website for a charity that had a heavily medicalized, gloom-and-doom view of Autistic People (one many Autistic

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Finding nothing “physically wrong” with me (and out of ideas), the doctor referred me out for a mental health assessment, convinced the symptoms were “all in my head.” A similar thing happened to me when this same sickness took away much of my childhood; many tests and medications were tried on me, but none of them were able to provide any relief to my pain and discomfort. Back then, when the doctor found nothing “physically wrong with me” and told my guardian it was “all in my head,” nobody took me to get “my head” looked at (because mental health wasn’t something we spoke about in my family). As an adult, it was up to me to take the step forward and talk to a psychologist (or not). “I’m referring you for a mental health assessment. I recommend you see someone who specializes in anxiety disorders,” the doctor finally told me, passing me on as had been done to me many years earlier. I realized I needed help and likely wouldn’t be able to continue working at an organization that I (at the time) thought was my dream job without being able to modify my environment (by asking for disability accommodations), so I asked a question (one that had stayed in the back of my mind for months since it first hit me): “I think I might be Autistic. Can I see someone who knows something about Autism too?” I asked hesitantly. Continued on next page

#Asking Autistics, continued from page 44 The doctor looked at me, “I don’t think you’re Autistic,” she said doubtfully, “but sure,” she said as she handed me a card for the local Autism Society. I thanked her and took the card with me, placing it in my purse, where it stayed for a few days as I hesitated to make the call, afraid of what the results of this assessment may bring. If they diagnosed me, I wouldn’t be able to deny it anymore (or so I thought). It would mean I WAS Autistic (a lifelong difference), and for some reason (probably because I didn’t understand what Autism was yet), being locked into that truth (one that seemed so final) scared me. Eventually, I got up the nerve to pick up the phone and call the number I’d been given. I asked the person on the other end if they could help me find a specialist who worked with Adults (many only work with kids) and also one who specialized in anxiety disorders. Out of the long list of providers, only four in the Austin, Texas, area were willing to diagnose an adult, and only one also specialized in anxiety disorders. There was also more than one provider who wouldn’t see me upon hearing I was working in an office full-time (even though doing so was killing me). According to them, “if I was able to work, my Autism wasn’t bad enough that a diagnosis would help me access services” - meaning if they didn’t have something to sell me post-diagnosis, they didn’t want to see me. Eventually, I did get my diagnosis. Once I found someone who would agree to evaluate me, things were cut and dry (except that my insurance refused to pay for the assessment even after I was diagnosed Autistic). If I were a child, my assessment would have been covered. As an adult, the insurance company felt the evaluation was “unnecessary” (because there were no medical “Autism- related” services that I was trying to access since almost all of them are for children). Left with the bill, I put the entire assessment on a credit card because I (like many Autistic People) didn’t have that kind of cash. At first, it was a relief to have a second opinion that I “really was Autistic,” but not long after getting home with my multi-page report, doubt (denial) began to sink in. “Maybe she got it wrong. Maybe I’m not Autistic.” I still had doubts. Those doubts held me back, preventing me from sharing my diagnosis with people around me. I sat on the information at first, turning to a few book recommendations (of books by Autistic People) that my psychologist had given me. Hoping to disprove the diagnosis I’d been given, I dove into the books hungrily, but the more I read, the more sure I became that the diagnosis I’d been given was correct. I was (and always have been) Autistic. I’m grateful that my journey, once I’d been given this label, started with Autistic stories and voices and not the tales and descriptions of “Autism” that non-autistics share (because non-autistic people describe what they ASSUME motivates Autistic people, and Autistic People KNOW why we do things).

I often think about how my life could have been very different if I had only been exposed to those harmful non-autistic descriptions of “autistic behavior” (that contrasted with Autistic experiences so significantly they were unrecognizable to me as an Autistic who lived them). These perspectives lacked insight into the internal worlds of Autistic minds, projecting upon us and obscuring the truth. Continued on page 46

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#Asking Autistics, continued from page 45

The misinformation easily could have prevented me from ever learning the truth about my brain (had I not been steered toward Autistic perspectives on Autism). Non-autistic people have a terrible habit of classifying Autistic People based on how much of an inconvenience we are to those around us; however, many Autistic People internalize things, keeping all of our pain and struggle to ourselves (especially those of us who grew up thinking we were non-autistic).

Nobody cut us any slack. We were expected to behave and perform just like everyone else (despite having very different brains). Many of us were punished for showing outward signs of Autism, so we learned to hide anything about us that would draw the attention of adults and peers who believed “more discipline” or bullying (vs. support and understanding) was the answer to our “problems” and “peculiarities.” I had hoped my diagnosis would be a key, unlocking the door to accommodations (that I was legally entitled to) now that my disability was medically documented. However, when I finally got up the nerve to share with my employer what I’d learned about myself and my declining health, I was met with opposition. “Wow! I’m surprised! You must be high-functioning! Since you worked here for years without this diagnosis, it doesn’t make sense to change anything now.”

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My accommodations were denied because, despite having a medically diagnosed disability and presenting the documentation of it to my employer (who had NO MEDICAL TRAINING OR CREDENTIALS), they determined that my Autism was “high-functioning” and therefore didn’t need support (despite me telling them exactly what I needed). Too many non-autistic people assume that “high-functioning” Autistic People have “autism lite” and will use their

perceived competence of a person (without seeing any of the internal struggles) as a way to deny support that person needs. If we don’t bother or inconvenience non-autistics considerably, they say we are “too high functioning” for support. If we inconvenience or bother them too much, they may view us as incapable, viewing someone who needs more support as less valuable than someone they assume doesn’t need help. Neither camp is a good one to be in, as both descriptions prevent us from being treated equitably and ignore the fact that Autistic functioning can fluctuate depending on a variety of factors, including how much support that person has in their life (and throughout an Autistic Person’s lifetime). When I’m feeling my best, can have enough control over my life, and my needs are met, when people respect my Autistic Continued on next page

#Asking Autistics, continued from page 46 brain, I can function quite well. However, at the time of my diagnosis, I was barely functioning, unable even to eat most days, and getting in trouble for missing too much work (because I was sick all the time). I was technically “functioning,” but my quality of life was so bad I was considering ending it. The phrase “you must be high functioning” was like salt in a wound, shutting me down almost every time I got the courage to share my diagnosis with someone. It was nearly as bad as “I don’t believe it.” At first, I didn’t know how to respond, though now if someone says this to me (assuming I have the energy), they are likely to get a lecture about the harms that these static functioning labels (that enforce stereotypes and ignore the individual’s unique needs) cause Autistic People - denying our agency or support depending on how we’re classified. Curious about what my readers had to say, as I’ve often done, I took to my keyboard and typed yet another question out: #ActuallyAutistic #AskingAutistics Has anyone ever dismissed you by saying: “You must be high functioning”? Responses from #ActuallyAutistic Facebook: (Editor’s note: Out of respect to #ActuallyAutistic contributors, responses have been shared as submitted and are a sampling of many responses. To see posts like these on Facebook, visit https://www.facebook.com/NeurodivergentRebel). I have. but all my life I’ve been dismissed by being told “You’re normal” “there’s nothing wrong with you.” “you’re doing fine.” Clearly I wasn’t miserable enough for them to notice how much I’ve been struggling. Or cared enough to even understand why I’m struggling. – Ángel M Vélez García Dismissed and treated like my autism was not real. I’ve given up trying. – Nicole M Robbins, (she/her) St Louis, MO. All the time. Or they don’t believe me at all. – Harris Eddie Hill, Centre for Childhood Trauma Healing, Mxharrishill.com No because as someone with a very late diagnosis I don’t share the fact that I am neurodivergent with people who might doubt me, discount me or say something like this. – Luana Nery

My clients do this to me. All. The. Time. Apparently I don’t act enough like their 5yo nephew – @Its_MF_EllieMae (hairstylist) I think, in my case, they didn’t think they were being invalidating. I think they think it’s a supportive thing to say. Like “at least you don’t have it too bad”. Which is sooooooo awful in its own way because it is invalidating to my experiences and it is a disgusting way to think of autistic people they think are lower functioning. – Crystal Langille In my role at Autism Empowerment, people regularly make incorrect assumptions about me and my “high functioning” level. If I sense they are well-meaning and receptive to conversation, I try to turn their assumptions or dismissals into a learning opportunity, meeting them where they’re at. Ableism takes a long time to dismantle and fighting it can be exhausting, but I believe most people are willing to do better when they understand why a culture of acceptance is so important. – Karen Krejcha, Founder, Autism Empowerment This doesn’t just happen with Autism, it happens with ADHDers too (and many Autistic People are also ADHD in addition to being Autistic (also known as AuDHD). Diagnosed in my mid 40’s. I have already learnt to not tell everyone as apparently I’m too accomplished to have adhd or that it’s just a label they give everyone nowadays... – Karin G. I used to refer to myself as high functioning until I learned more. – Kira Kenta When I told my mom I thought I might be autistic she said “don’t be ridiculous! you can’t be autistic, you’re smart!” In one sentence invalidating my entire existence and showing her prejudice that all autistic people are not intelligent. I stopped talking to her shortly after that. – Sunny To join in the conversation, here is the link to the original Facebook post: https://bit.ly/highfunctioning 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.

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HEALTH + WELLNESS

A Fitness Approach for Every Body It’s All In The Trust By Ryan Lockard, CSCS*D, CSPS*D The Beginning I found a job on Craigslist in 2007 that would change my life forever and is the reason why I’ve been asked to contribute to Spectrum Life Magazine for several of their past issues. It has led me down a path of creating accessible fitness for the neurodiverse population and educating others on the need for more services like my company (Specialty Athletic Training) provides. Advocating that the training approach may be different, but training quality should not be less. During my last year in college, I found a job working as a 1:1 aide for a thirteen-year-old boy with autism. It became clear that the expectations for him were lower than his peers in his PE class, yet he was more than capable of participating. For example, Benjamin (who became the inspiration for Specialty Athletic Training) would become visibly agitated during the warm-up period of class. The students were required to run four laps around the gym, but Ben would only be required to run two. After speaking with Benjamin, it became clear that he did not like to sweat. The reasoning though was that he didn’t understand why his body sweats. No one ever explained it to him, and it freaked him out. Explaining to him that it was his body’s process of cooling itself off and the purpose that it served, relieved his anxiety around sweat and the expectations around his participation were raised. Never Assume I have found that many things are assumed as “common sense” regarding a person’s bodily responses to exertion, which aren’t always common knowledge to the clients we serve. The example with Benjamin not understanding why his body sweats is a prime example of this. I created Specialty Athletic Training with the intent of making fitness accessible to the disability community, but also creating a safe environment for our clients to learn more about how their bodies work and how truly remarkable the human body is.

naturally helps squash stigmas and stereotypes. Many, if not all, stigmas and stereotypes surrounding disability stem from lack of exposure. It’s All in the Trust Exercise is exercise. Your body only moves in so many ways. What we do for exercise selection and programming isn’t revolutionary. Our relationship-based approach makes us different—meeting each client where they are in their fitness journey and taking a genuine interest in their lives outside of training. We are building trust with our clients from the very first phone call. Most of our clients have had a negative fitness experience in the past. From being bullied in school during PE class to working with a trainer who didn’t understand their needs, they have not been set up for success. After someone expresses interest in our program, we have a trainer reach out to answer any questions that they may have. This phone call also allows us to receive any negative information from their past experiences, so we can make it all positive moving forward. Many fitness professionals will have new clients go through a battery of exercises and movement patterns for their initial assessment. Ours is different. After one of our trainers has that initial phone call discussion, we have the family come and meet with a trainer at the facility. This not only gives us the opportunity to start the relationship and trust-building process but also allows us to observe movement patterns naturally. Our clients typically have a history of being told their limitations and what they need to improve, so we do the opposite. We make sure that their exercise program sets them up for success based on our observations, with the intent of having our clients feel empowered and better when they finish the workout than when they began. Speed Bumps, Not Roadblocks

Our business structure is unique in the sense that we don’t aim to own a facility. I prefer bringing our clientele into an already existing gym community and fully integrating them with the other members.

There are several factors that contribute to the lack of fitness professionals dedicated to serving this community. The fitness industry has one of the highest start-up failure rates, which makes it daunting for new professionals to begin a new endeavor. There is also a lack of awareness of the need to serve this community, reflected by the limited certifications for serving special populations and the lack of appropriately trained professionals.

I believe in meeting your clients where they are in their fitness journey, no matter what population you train. Exercise is a great avenue for inclusion, as your body only moves in so many ways. Our clients train alongside their peers and are doing the same movement patterns and exercises as them. It elicits connections based on common activities and

These are just a couple of things that contribute to the lack of fitness professionals solely serving the neurodiverse community, but just a reminder: they are speed bumps. Specialty Athletic Training is proof that if you have a vision of making an inclusive fitness space, not only can it be done, it can thrive!

Inclusive Business Model

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Photos courtesy of Mary Rebekah Moore Photography

Ryan Lockard is the Founder and CEO of Specialty Athletic Training, a personal training company located in the Portland Metro area and Central Oregon that specializes in fitness programs for children and adults with disabilities. He is a Certified Strength and Conditioning Specialist (NCSA), Certified Special Populations Specialist (NSCA), and has served on the board of directors for the Autism Society of Oregon and the Autism Society of America. He can be reached at Ryan@SpecialtyAthleticTraining.com or www.SpecialtyAthleticTraining.com.

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FOR INFORMATION AND RESERVATIONS CONTACT: molly@mollyscaribbean.com 206 575-0907 / 503 715-3107 www.mollyscaribbean.com

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therapy THERAPEUTIC OPTIONS AND RESOURCES

IN THIS SECTION Pathological Demand Avoidance............................................................... 52 Upcoming Autism Empowerment Activities....................................... 55

PEDIATRIC THERAPY CENTER Supporting Children With Developmental Needs • Occupational Therapy • Physical Therapy • Speech Therapy • Groups & Camps

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THERAPY

Pathological Demand Avoidance (PDA) Reframed A Persistent Drive for Autonomy By Dr. Anson Service, Psy.D., LMHC aka Neurodivergent Doctor Pathological Demand Avoidance: Also known as extreme demand avoidance, rational demand avoidance, and persistent drive for autonomy. Personally, I do not like using the word “pathological” in this context. Even though the word pathological can mean “extreme” or “excessive,” it also can mean “disease” and carries a negative stigma. This idea of disease, or brokenness, is something we neurodivergent people are trying to separate from through educating others. I prefer the latter term Persistent Drive for Autonomy because it still uses the PDA acronym, it places emphasis on the need for autonomy, and, whether we like it or not, the PDA acronym has already taken hold throughout the world and expecting that change may not be realistic. Whatever your preference is, I will call it PDA in this article.

In my clinical work, I have heard others describe PDA as having the feeling that others believe they are lazy, avoiding tasks or demands on purpose, or confronting severe phobias on a daily basis until the person is unable to participate in most daily activities. The American Psychological Association’s (APA) Diagnostic and Statistical Manual, Fifth Edition (DSM-5) does not include PDA as a diagnosis. Because of that, it is not readily recognized, and its presentations can be misdiagnosed. Even though the APA in the U.S. and Canada do not recognize this as a disorder, some countries, like the U.K. and Australia, do and it is considered more than just a hot topic on TikTok.

What is PDA?

In my clinical work, PDA is taken very seriously and is a standard topic in my testing process for autism and ADHD, and it is almost always a challenge for autistic people in therapy.

PDA is a neurological condition where a person avoids tasks or demands to an extreme, which causes dysfunction in their life. It is also characterized as challenging authority, which can be extended to some rules or laws, usually due to anxiety and the need for autonomy.

It can be hard to see in many neurodivergent people due to masking, and Dr. Megan Neff, a fellow neurodivergent who trains clinicians on PDA1, suggests that there are seven core characteristics to PDA that make it difficult for people to recognize.

To the PDA individual, demands or the loss of autonomy may be perceived as a threat to self or way of life. Autonomy, in this context, means exercising independence and being able to make decisions for oneself without strong outside influence or force. It means being able to make choices about one’s own body and doing things that do not create cognitive dissonance.

Below are her seven core traits.

Many in our neurodivergent nation tell heartbreaking stories of being physically forced into rooms, classes, physical holds, and harmful situations that they did not agree to, all in the name of “We’re trying to help you” or “tough love”. This treatment can be extremely distressing to any person, but to one with PDA, it can cause debilitating trauma. Who has PDA? PDA commonly co-occurs with ADHD and autism and is a major issue in people’s lives. It tends to affect virtually everything, including social, romantic, educational, occupational functioning, and overall wellness. It has also been seen in those with epilepsy, and in children diagnosed with Oppositional Defiant Disorder.

1. Resistance and avoidance of everyday demands, including those that are perceived as trivial or routine. 2. An overwhelming need to be in control and avoid being controlled by others. 3. Uses social strategies as part of their avoidance. This can include using social skills to avoid a demand, such as distracting others, making excuses, or refusing to do something but using a social skill to refuse such as “I am sorry, but I am not feeling comfortable doing that right now. Can I get back to you on that and we can take care of it?” 4. Surface social communication abilities, despite difficulties with social interaction and understanding. 5. Excessive mood swings and impulsivity, which can often be interpreted as “moodiness” or having “anger problems”. Dr. Neff insists that these can be external manifestations of internal physiological stress.

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Pathological Demand Avoidance (PDA) Reframed, continued from page 52 6. “Obsessive” behavior, often focused on other people, or can be focused on performance demands (due to acute anxiety). 7. Appears comfortable in role play and pretend, sometimes to an extreme extent. Not every autistic individual has PDA, although I would argue that PDA, like autism, is also on a spectrum. The main thing that separates PDA from regular demand avoidance, which most everyone experiences from time to time, is that it is an “extreme” avoidance of everyday demands needed to live as expected, such as grocery shopping, setting doctor appointments, showering, going to work or school, and more. What do we do about it? People with PDA do best with a multiprong approach, such as working with occupational therapists, mental health counselors, speech and language therapists, school administration and teachers, parents, primary care providers, and virtually anyone who will have an impact on this person. Simply talking with a therapist once a week may be okay for many people, but imagine the changes that could occur if everyone in this person’s life knew what PDA is and what it is not. Sensory, emotional, medical, and communication needs could be better addressed, all while the person with PDA has control over what is happening. Below are some helpful suggestions when working with PDA. 1. Education about PDA is necessary for those who interact with the person. 2. A person with PDA must listen to their inner self more often. Sometimes PDA can be beneficial in helping avoid harmful situations due to less than noticeable clues one may have picked up on that others may have missed. Sometimes one must trust their gut feelings. 3. Each person’s anxiety levels and triggers must be understood. The demands placed on them must be sensitive to them and reflect that understanding. 4. Fewer demands: As a society, do we really need to demand so much? When we think about the number of demands placed on each of us, it can be overwhelming. Analyze the demands we make and adhere to. This is about keeping, ceasing, or modifying demands to provide more autonomy to each autistic individual. 5. If PDA is truly a neurological condition, then it makes sense that we would treat it as such and provide accommodations, which can be in the form of giving each person space to deal with their shutdowns, meltdowns, or just to retreat when overwhelmed without judgment or shame heaped upon them. Allow them their process of self-regulation.

6. Allow each person to make their own choices more often, even if you do not always agree with them. Assist them with what they need help with. There is no shame in providing or receiving help, even when you may have different expectations. Helping and supporting a person unconditionally will send the message that they can trust you to help them without judgment, fostering a more meaningful relationship. 7. Medication can be an effective option for some. Talk to a prescriber who specializes in psychotropic medications. 8. Get a co-regulator: This person helps regulate the nervous system of another person experiencing PDA. They know how to talk with them or know when not to talk at all. This is someone who can aid and accommodate on demand and can go with the flow. They should be emotionally regulated and will not make situations worse with their own projected problems. 9. Find your people: We are the neurodivergent nation, and there are multiple resources in print, and online, such as Spectrum Life Magazine, that can help us to bind together, find resources, support each other, and force changes in a world that has ignored and pathologized us. 10. A person with PDA must give themselves permission to say no to commitments that will cause too much anxiety. 11. Have prewritten replies to demands. This makes responses less stressful. 12. Instead of addressing a request or demand in the moment, face to face, which can create pressure to commit, tell them you would like to seriously consider the request. This will provide ample time to really think over what it is that might be involved with the demand or request. You can then respond via text or email with something that has already been written out to politely and thoughtfully accept or decline their invitation or demand. 13. Set up systems. Automatic bill pay, for instance, has been a wonderful feature for those with PDA. It is one less thing to deal with. Anything a person can do to automate the appropriate response to demands can be helpful. 14. Meditation is one of the most important things a person can do. It helps regulate the nervous system, which is the body and brain’s superhighway for PDA. You will find that being able to deal better with daily demands can be easier when meditation is added to the daily routine. References: 1. Dr. Megan Anna Neff, Autism PDA Explained: The Core Characteristics of Pathological Demand Avoidance. https://neurodivergentinsights.com/autism-infographics/autism-pda-explained

Dr. Anson Service is a licensed mental health counselor, and part of a team that assesses individuals for autism, ADHD, and more at Adventure Psychological Services. Dr. Service has written for various magazines and authored several books and is happy to further educate others on autism and other areas of neurodiversity. He and his wife have raised three young men and are now raising their dog named Luna. www.NeurodivergentDoctor.com.

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