Spectrum Life Magazine Summer 2022 Issue from Autism Empowerment

Page 1


TWIDDLE®NATHAN

Lightly-weighted for an extra sense of security and stability, the TwiddleNathan helps youngsters find that “just-right

zone” for maintaining attention and appropriate behavior for tasks and activities. Crafted from cozy, durable fabrics and plush fleece, the Nathan features high-grade fidgets attached with ribbon loops that snap, to enable switching around and personalizing fidgets for variety’s sake, training purposes, or the child’s own preferences.

www.4twiddles.com

Ideal for home, therapy clinics, and ”safe spaces” at school and other group settings.

TWIDDLE®CATS

TWIDDLE®PUP

Try a Twiddle® today!

TWIDDLE®CLASSIC

TWIDDLE®SPORT

TWIDDLE®NATHAN


SUMMER 2022

contents

7

THE ADVENTURES OF JAKE JETPULSE

FEATURED SECTIONS

4 5

From the Publisher Representation across the spectrum is essential. Upcoming Autism Empowerment Activities Events, enrichment, podcasts and support.

EDUCATION

29 32

ADVOCACY

7

The Adventures of Jake Jetpulse A superhero for autistic children.

LIFESPAN

14 16

#AskingAutistics with Lyric Holmans Manipulation, liars, and trust. A Day in the Life of Jennifer Cook Author, speaker, consultant, mom.

Columbia Play Project STREAMing inclusive play every day.

Exams! Exams! Exams! But what about accommodations?

HEALTH + WELLNESS

37 39 40

Autism Imposter Syndrome Behind the mask: that sinking feeling of faking. Spectrum Life Resource Directory Spectrum Life online helps you find autismfriendly service providers. Dissociative Identity Disorder or Autistic Style of Thinking? Autistic neurology versus psychiatric symptomatology.

therapy

Recreation

21 24

Bluebee Teevee Autism Information Station Behind the scenes with host James Sullivan.

43

Spelling to Communicate (S2C) Hopeful trajectories for nonspeaking autistics.

Stories by LGBTQ Autistic Authors That everyone should read.

www.spectrumlife.org

3


FROM THE PUBLISHER

SpectrumLife TM

m a g a z i n e

SUMMER 2022 | VOLUME 12, ISSUE 2 SPECTRUM LIFE MAGAZINE TM A program of Autism Empowerment TM Karen Krejcha, Autism Empowerment, Publisher Dave Born, Graphic Designer Editorial Advisory Board:

Welcome to the Summer 2022 edition of Spectrum Life Magazine!

For this issue’s cover story we’re combining Dad and son power together again! Meet Led and Jake Bradshaw, a talented dynamic duo who created a superhero comic series to empower autistic children. See The Adventures of Jake Jetpulse (page 7). From the founding of Autism Empowerment in June 2011, we have wanted youth, adults, and families to know that wherever they are in their autism journey, we are here to meet them along the way. One way we show that in Spectrum Life and in our work is by telling the stories of a diverse range of people across the autism spectrum. Respectful representation is essential. That includes autistics who are speaking, nonspeaking, and everywhere in-between. It includes autistics who have intersections with the LGBTQ+ community, who are of all races and ethnicities, all religions, all economic backgrounds. It includes those who have intellectual disabilities, ADHD, and other mental health conditions. We all count. Sometimes Autism Imposter Syndrome (page 37) tries to tell us otherwise, but each of our stories is worthy. Stories highlighted in this issue include #AskingAutistics with Lyric Holmans (page 14), A Day in the Life of Jennifer Cook (page 16), and Stories by LGBTQ Autistic Authors Everyone Should Read (page 24). We also highlight the importance of inclusive education and play with Columbia Play Project (page 21), Bluebee TeeVee Autism Information Station (page 29), Exams, Exams, Exams! (page 32), and Spelling to Communicate (page 43). In order for people in our world to better understand the strengths and challenges that people across the autism spectrum face, they need to see our faces, hear our stories and be open to listening with respect, love, and dignity. Thanks for being an Ambassador for Acceptance of All Abilities!

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

4

www.spectrumlife.org www.spectrumsmagazine.org

Amy Donaldson, Ph.D., CCC-SLP Laurie Drapela, Ph.D John Krejcha Tara O’Gorman, MSW Heather Parrott 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, Autistic and Asperger 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. © 2022 All rights reserved.

ON OUR COVER

Dad and son superheroes Led and Jake Bradshaw captivate comic readers with The Adventures of Jake Jetpulse. (page 7)

Photocourtesy of Led Bradshaw

It was six years ago when we published the first issue of Spectrum Life Magazine (then Spectrums Magazine) under Autism Empowerment’s nonprofit umbrella. Since we were doing a feature on Dads for Father’s Day, our first cover featured my husband John and youngest son Ryan.


Upcoming Activities • www.AutismEmpowerment.org Visit our website for updates, Facebook group links and community activities.

Autism Empowerment Potluck Picnic

Autism Empowerment www.AutismEmpowerment.org/donate MONTHLY

Saturday, July 9th from 11:00 am - 2:30 pm Food • Connections • Games • Resources Salmon Creek Park/Klineline Pond 1112 NE 117th St., Vancouver, WA 98685 If you are able, we invite you to bring a potluck item to share with picnic guests. This is a low-key event for people to come out and enjoy the park together. Bring seating or supplies that make you comfortable. Hamburgers, hot dogs and drinks are provided free while supplies last. The event is free but Salmon Creek Park charges $3 for parking. For information or if you would like to help please contact: John Krejcha (360) 601-4678 or email: john@autismempowerment.org

PODCAST PROGRAMMING Autism Empowerment Podcast Wherever you identify in your autism or autistic journey, Autism Empowerment is here to meet you along the way with acceptance, enrichment, inspiration, and empowerment for the road ahead. Episodes, Trailer, Show Notes, and Transcripts at: www.AutismEmpowermentPodcast.org

Ongoing Enrichment: • Autism Empowerment Podcast • SpectrumLife.org website • AutismEmpowerment.org website • ZOOM Autism Magazine Ongoing Service & Volunteerism: • Autism Empowerment Cares • Autism Serves Kids Care Club • Autism Serves - Volunteerism for all ages Online Support Groups: • AWEtism We Embrace (Autistic & Non-Autistic Adults, Parents and Allies) • Links to Support & Resources

Connect with us online! linktr.ee/autismempowerment

/SpectrumLifeMagazine /AutismEmpowerment /AutismEmpowermentPodcast /ZoomAutism @SpectrumLifeMag @AutismEmpowermt @Podcast_Autism @ZoomAutism AutismSpectrumLife AutismEmpowerment BluebeeTeeVee

Subscribe on Apple Podcasts, Spotify, Google Podcasts or wherever you listen to your favorite shows. New shows coming soon!

@AutismEmpowerment

www.spectrumlife.org

5


advocacy

IN THIS SECTION The Adventures of Jake Jetpulse...................................................................7

6

www.spectrumsmagazine.org

Graphic courtesy of Jetpulse Studios

EMPOWERING CHANGE WITHIN THE AUTISM COMMUNITY


ADVOCACY

The Adventures of

Jake Jetpulse A Superhero for Autistic Children

By Karen Krejcha The Adventures of Jake Jetpulse is a comic book adventure series of learning books for autistic children that is written from the perspective of an autistic child. The series features an autistic superhero and his team of friends who work to save the universe while promoting inclusion, diversity, friendship, and encouraging readers to be the heroes of their own stories. It’s not every day that Spectrum Life Magazine is invited to speak with superheroes, so when I had a chance to go behind the scenes with dad and son collaborators Led and Jake Bradshaw, I grabbed my cape and off I went to learn the backstory about this superhero universe. But before we could get into the comics, we needed to learn the superhero’s genesis story. Hello! Tell us a little about Jake. When was he first diagnosed on the autism spectrum? Led: Jake currently attends Brooklyn Blue Feather Elementary in Brooklyn, New York. Jake was diagnosed on the autism spectrum when he was almost four years old. Jake was attending preschool when the symptoms started to appear. It was his teachers that brought it to my attention. They noticed that a speech delay might be present because he wasn’t using certain noun-word combinations. He was very self-directed and focused mainly on superheroes as the topic of every conversation. He’d wander away during classroom discussions. It was extremely difficult leaving him at school without him bursting into tears. Not knowing much about autism spectrum disorder at the time, it never occurred to me that this might be a disruption to his routine. Jake, what do you remember about that experience? Jake: I remember being very scared and I wanted to go home. It was very loud, and I didn’t like being there. It wasn’t fun.

Led: He was very afraid of going to school. Once he was there, he wanted to leave. We had to shorten his day from a full day of pre-K to a half day so that he wouldn’t become overwhelmed. I felt bad every time I dropped him off. In the back of my mind, I was wondering if I was traumatizing him. It was a difficult time for the both of us. What are some of your passions and current hobbies? Jake: I like wearing costumes and pretending to be a superhero. Batman and Spider-Man are my favorite ones. I like to draw and make my own comic book stories. I want to be a comic book artist like my dad. And I want to make my own video game with Jake Jetpulse. I like watching the cartoons that dad used to watch when he was a boy. Led: Jake has a ton of superhero costumes and accessories that he uses to embody the characters he is dressing up as. He has tons of magic swords, enchanted hammers and masks in his collection. I know that there are several versions of the same character. I really don’t know how many he has in total. I kind of lost track. He was really into Batman as a kid. He dressed up as Batman for Halloween, I think five years in a row. He loves drawing his own comics. He still loves stapling the pages together to make his incredible stories. Now they’re more detailed and colorful. Who is Jake Jetpulse? Led: Jake Jetpulse represents the real Jake’s imagination and curiosity. Jake Jetpulse, just like the real Jake, is a kid who’s learning how to control his incredible talents while discovering the world around him. Both are learning what it takes to be a hero and a friend to the community that they grew up in. I envision that the character will grow along with its readers. How did The Adventures of Jake Jetpulse come to be? Led: As I learned more about autism, I came across a website that explains how beneficial art therapy is for individuals living on the spectrum. I found this to be unique. Not only because drawing was my natural talent, but because of how easy it is for an individual to express themselves and communicate without saying a word. It’s a very visual experience. Continued on page 8

www.spectrumlife.org

7


The Adventures of Jake Jetpulse, continued from page 7

Graphic courtesy of Jetpulse Studios

8

www.spectrumlife.org www.spectrumsmagazine.org


The Adventures of Jake Jetpulse, continued from page 8 In the weeks after receiving his diagnosis, I started incorporating several art therapy techniques into Jake’s daily routines. First, to help him get a grasp of his feelings, we started with an emotions chart. It was nothing fancy, just a grid with boxes that highlighted the days of the week. Every day after school, I would encourage Jake to tell me how he felt by filling in the boxes with a colored crayon. I’d use red for angry, blue for sad, yellow for happy.

Julia is the “know it all” genius of the team. She loves science and history and can always be found by Jake’s side. She’s a little awkward in conversations. Unless it’s about a topic that she loves. She doesn’t make eye contact with others unless she’s comfortable.

Next, we moved to drawing pictures using his emotions. We’d sit together and I’d say to Jake, “Draw me something that makes you happy.” He was allowed to draw anything he wanted. We’d do the same for sad and angry drawings.

And Marrz is the proud protector of the kids. He’s very literal, so jokes have a tendency of flying over his head. Did I also mention that he is an 8-foot Troll?

The lesson that started it all was when I asked Jake to draw himself as a superhero. The exercise was meant to highlight his positive traits. But Jake went the extra mile and started to create a character that he called “Super Jake”. In this story, Jake was a kid from another planet with superpowers. As a comic book geek, I was so intrigued by his story, so I started asking him questions and taking notes about his fantastic superhero world. Jake was making some progress in school. But not enough. He was still behind the other kids learning his sight words and building small sentences. After a few months of listening to Jake build this superhero universe, I took it upon myself to draw the character in my art style. Jake took to the character immediately. Then, I got the idea to print the images onto 4 x 6 photo paper and make flash cards with his sight words at the bottom. This was the way I pulled him into learning. How would you describe the series to someone who has never seen it before? Led: The Adventures of Jake Jetpulse is a comic book adventure series that features an autistic superhero who discovers that he and his friends are the only hope for saving the universe from the evil Goblin Hive Queen and her minions. It’s a story where the diagnosis of autism isn’t stated. I decided that this would be a great way to showcase the hallmarks of autism since this is what makes Jake so unique. The reader can read the story and relate to someone they might know who is living on the spectrum. It helps build understanding while telling an awesome comic book series. The story of Jake Jetpulse embraces the fun of Jake’s favorite cartoons like Teen Titans, Big Hero 6, and The Incredibles. Jetpulse Comics also embraces diversity as we create a universe of characters from different backgrounds, races, and cultures. It is important for children to see characters who look like them in comics and film. There are many characters in your comic book series. Are they all on the autism spectrum? Led: I divided the hallmarks of autism into three of the core characters: Jake, Julia, and Marrz the Troll. Jake Jetpulse is a lot like Jake himself. He’s curious, adventurous, and he can be impulsive which can sometimes get him into trouble.

Last year, we added two more members to the team. We added the supernatural crime-fighting duo Miranda and The Shrive. Miranda is a reclusive telepath who is psychically connected to her partner Shrive. He is a ghost with incredible superpowers who is also nonspeaking. We are about to introduce an all-new character, Stephanie Kim to the team. She’s all about routines. Her powers are super-cool. She can speed up and slow down time. There are villains and monsters in the series. How did they come to be? Led: Over time, I started to get even more creative with Jake and our drawing sessions. The villains and monsters in our story come from Jake’s nightmares. Nightmares can be unsettling for anyone, even more so for a child on the spectrum. To help Jake conquer his nightmares, we’d sit together, and I’d instruct him to draw whatever he could remember about the dream. The next step was to give the monster a silly name. This was a way to give Jake his power back and not fear the monster in his dreams. If it was the landscape of a scary place, that would become our strange new planet for our story. We gave everything a backstory so that his dreams became easier to explain and it created good conversations. This process helped Jake create stories for the monsters who once used to scare him. I even went as far as creating monster-face totems using magic markers and taped them to the bed to protect him at night. A small water bottle from the dollar store became our monster repellent spray. Jake, how has this collaboration shaped your relationship with your dad? Jake: I like to watch him draw. He teaches me how to use the computer so I can draw just like him. We talk about cartoons and video games. It’s fun. We like to talk about what it would be like to have a Jetpulse cartoon. And we want to see Jake Jetpulse team up with Spider-Man one day. That would be cool. How does Jake Jetpulse make you feel about autism? Does being a superhero help you advocate? Jake: I want all the kids in the world to know that you can be anything you want. Don’t let anyone tell you that you can’t be the best at something. And always believe in yourself. Continued on page 10 www.spectrumlife.org

99


The Adventures of Jake Jetpulse, continued from page 9 You are strong in your heart. My favorite hero is me. And I want kids to know that there’s a hero in them too. I want to help them find it.

about being their own hero. And I want Jake Jetpulse to team up with The Avengers. Because I want to be the first black Avenger with autism. Can I say that?

Led, how has this collaboration shaped your relationship with your son?

Of course! You currently have multiple comics and books. Are there plans for more?

Led: So many things happen when we work together. We’re bonding. We’re laughing and playing and sharing ideas. I learned to embrace his special interests and it taught me so much.

Led: Definitely. We have a reading and math skills activity book, a beginner’s reading book, and a “make your own superhero” adventure book which has all the lessons that I created to teach Jake how to make comic books.

We push each other. I get to show him how comic books are made. There’s this appreciation for what I do. It makes me feel good to watch him run around the house dressed up as his own character instead of someone else’s. He really wants to be a real-live superhero. I really want to see him get there. How does your collaboration work? Who comes up with the stories? Led: We both come up with a story. We already know how it all begins and how it ends. To be honest, Jake Jetpulse is just one story out of six. So, you must look at it the same way you would when you think of Star Wars or the Marvel films. There’s an entire timeline to this story and it spans for years. When Jake was little, I would record him as he played. I recorded as much of his universe that I could. The rest came from conversations. As Jake got older and learned to write, he’d come up with names for characters and we’d start building a character around them. We start every idea on our whiteboard. Jake loves our creative team meetings. Then I give Jake the task of creating the concept art. So, he’ll draw his interpretation of the character. Then, he gives it to me, and I get to work translating what he drew. What’s a fun fact about the way the series is drawn? Led: Within the pages of the Jake Jetpulse comics, I pay very close attention to body language and facial expressions. When Jake was younger, he had difficulty reading people’s expressions. He would always ask, “Are you mad?” The characters are drawn with bold outlines and the scenery is slightly blurred to prevent distraction. Jake, what is the biggest challenge you face when working with your dad? Jake: We have good ideas. And we have bad ideas. And there’s a lot of writing for comic books. I thought we just draw all day. We need more artists to draw the stuff. We want every kid to read our books so they can dream

There are also two full-length comic books with a third one on the way. We’ll keep making these comics as long as there are fans out there who read them. We have an amazing story too. This is only the beginning for us. I know that autism acceptance and advocacy is important to both of you. What other support do you offer on your website for families? Led: Our website has useful information about autism. When I created the site, I thought back to the time Jake was diagnosed. So, I created this autism database on our site to help parents of newly diagnosed children. You’ll find a list of red flags as well as information about sensory processing disorders and ADHD. All the information has been double-checked by Jake’s therapists and I update the information as it changes. What advice would you give to parents in supporting their children throughout their journey? Led: Do everything you can to be the best advocate for your child. Establish relationships with therapists and others who work with your child. Ask them, “What can I do at home so my child doesn’t forget this?” Try using their special interests as a learning tool. Whether it’s trains, cars, or superheroes, I found that it was more fun for both of us as we learned things together. Jake, what advice would you like to share with other autistic youth? Jake: If you’re diagnosed with autism, that’s not bad. It’s okay. You’re still unique and you can do anything if you put your mind to it. Don’t give up on your dreams, so you can be a hero too. To learn more about The Adventures of Jake Jetpulse, visit: Web: www.jakejetpulse.com Facebook: @JakeJetpulseStudios Twitter @Jetpulse_Comics Media: drum.io/jakejetpulse

Karen Krejcha (aka Wonder Woman) is a co-founder of Autism Empowerment, where she serves as Executive Director. She is Editor of Spectrum Life Magazine and host of the Autism Empowerment Podcast. Karen was diagnosed on the autism spectrum in her 40s, after the diagnosis of her two children. She has been married to John Krejcha for over 29 years and is devoted to being a loving wife, mom, daughter and ambassador of acceptance and empowerment worldwide.

10

www.spectrumlife.org

10


Whatever you do, or dream you can, begin it. -Johann Wolfgang von Goethe

Multnomah County Intellectual and Developmental Disabilities Services Division (DDSD) is a part of a statewide services delivery system. We provide case management services to adults and children and help individuals and families choose and plan services and supports to live a healthy, safe and productive life. Services that may be available depending upon eligibility:

We offer the love, support and compassion to help get you started.

         

Case Management IEP Assistance Family Support Employment Transportation to work Supported Living Residential Career Discovery In-home Support for Children In-home Support for Adults

Want more information?

Providing guidance, training & support around disabilities 9414 NE Fourth Plain Rd., Vancouver, WA 98662 360-907-3287, en Español 360-487-0776 www.peacenw.org or email: info@peacenw.org

Your law firm serving the special needs community. Alexandra S. Cook Attorney licensed in Oregon and California

• Special Needs Trust and Planning • Estate Planning • Special Education Law • Mediation

https://multco.us/dd 503-988-6258

WHO WE ARE & WHAT WE DO: NWCAVE is a volunteer operated national 501(c)(3) nonprofit organization based in Vancouver, WA. We work to inform, educate, and prevent violence and exploitation against all people nationally and internationally, no matter race, nationality, religion, gender identity, or sexual orientation.

OUR PROGRAMS & DIVISIONS: WA Says NO MORE

Honesty • Respect • Compassion

5200 SW Meadows Road, Suite 150 • Lake Oswego, Oregon 97035 Tel: (503) 726-1079 • www.lexemylaw.com

NO MORE Summit

Missing Children's Division

NW Women's Festival

Gift of Lift

Dignity Clothing Program Conference Against Trafficking

National Education & Training Institute

Learn more at www.NWCAVE.org www.spectrumlife.org

11


lifespan ALL AGES AND ABILITIES

IN THIS SECTION #AskingAutistics with Lyric Holmans .................................................... 14 A Day in the Life of Jennifer Cook............................................................. 16

12

www.spectrumlife.org

12


Alex, living with autism

Autism resources for your family Seattle Children’s Autism Blog offers the latest information helpful to raising your child with autism. Topics range from selecting summer camps, support classes and new research findings. Sign up today.

www.spectrumlife.org

13


LIFESPAN

#AskingAutistics Manipulation, Liars, and Trust By Lyric Holmans, NeuroDivergent Rebel Every single human being has strengths and weaknesses, Autistic or not. In our society, which is primarily populated and run by and for non-autistics, Autistic weaknesses and strengths can stand out. Standing out can be dangerous; attracting the wrong kinds of attention can get you into trouble, especially if you are someone (like me) who struggles to decipher other people’s intentions. Though I wish I could confidently say that I love every part of my Autistic brain, I must admit there are difficulties in my life that I could live without. When asked, most nonAutistic people would say that they also struggle to accept their weaknesses and vulnerabilities as much as any human does, especially if those vulnerabilities have a history of causing us pain. One of my weaknesses, which has caused me the most pain, is struggling to read people or to know when people are lying to me.

Though some people seemed to have picked up the ability to read facial expressions and body language naturally, before being diagnosed as Autistic at the age of 29, it had never occurred to me that people had hidden information in their body language. When I was younger, I assumed everyone was as honest and straightforward as I tended to be. It never occurred to me that people (even other kids) in real life would lie, cheat, manipulate, and steal. It seemed like something that only happened in the movies. My natural tendency to give people the benefit of the doubt has gotten me into a lot of trouble, leading to a lot of pain, heartaches, and broken trust. As an adult, full of invisible wounds and mental scars from misinterpreting countless social situations, I am wearier of new people, hesitant to reach out or let people in. Fear of this vulnerability has caused me to build a wall of self-protection, afraid of what dangers could come upon me if the wrong person got in. It’s easier for me now, with years of painful experiences under my belt, to be wary of new people, but once I give my trust away, it leaves me open to trusting people more than I should, sometimes to my detriment. I’ve been twisted, manipulated, gaslighted, and broken, rebuilding myself multiple times. The pain of trusting too quickly, giving too much leeway, and getting hurt is one I know too well. It is also why my trust, once lost, is nearly impossible to get back. While stuck in the trust bubble, all the patterns are hidden from me, but trust being broken breaks Continued on next page

14

www.spectrumlife.org

14


#AskingAutistics, continued from page 14 the spell. Suddenly, when I can see impartially again, the patterns come back to me, leaving all the lies and inconsistencies out in the open, now impossible to ignore. From that moment on, every inconsistency will stand out to me as I switch myself from being accepting of them to a more questioning mindset. Curious to know if other Autistics could relate, I decided to ask my readers about their personal experiences with trust. This month I ask: Initially, I tend to give people the benefit of the doubt, and want to trust people... but being “too trusting” has gotten me in trouble a lot over the years. Also: my trust, once lost, is very hard to get back. #ActuallyAutistic #AskingAutistics - anyone relate?

@Autumnal_Punk – Yeah...once I stop trusting you I can delude myself into thinking (with all best intentions) that it’ll be gained back but it won’t. I’ll high key not trust you and struggle with it. Matt H. – I have had many encounters like this where my trust has been destroyed. Once a bridge has been burnt... there’s no rebuilding it. Jonny, @JonnyGorden – Since mid-teens I find it very difficult to trust people. I’ve been burned, but also picked up the pieces after friends betrayed. I’ve seen too many times how easily people are maliciously deceptive. Worse is being betrayed by someone who has won my trust. Now I just expect it. Random - All of it. Though I’ve actually become way less trusting over the last ten years or so due to nt’s and even a few fellow nd’s being all too happy to take advantage of others if/when given the chance. Laura (22) from Brazil – get my trust it’s almost impossible. Kelilia, @Kelilia – Oh, this rings very true for me! Often, giving someone the benefit of the doubt is ascribing intent or even good will that the person hasn’t actually displayed. Anonymous – I always try to think the best of ppl. I’ve been misunderstood so many times & sometimes it leads to aggression. It’s painful. I wouldn’t want to do that to anyone. I would rather have my trust broken than hurt someone. But yes, once it’s broken it’s unlikely to get it back.

Responses from #ActuallyAutistic Twitter: (Editor’s note: Out of respect to #ActuallyAutistic contributors and Twitter styling, tweets have been shared as submitted and are a sampling of many responses. To search #ActuallyAutistic on Twitter, visit: https://bit.ly/askingautisticstwitter) snarkraider – YES. so much... and I think because of that, I’m a lot more closed off & skeptical of meeting new people. it’s really hard for me to feel like I can be myself when I’ve been judged so harshly for it in the past.

Max Folio, @arcaneSoulKing – My mom still scolds me for being too nice and forgiving because I overlooked the bad a lot. But after the last group fall out and the years of disregarded boundaries and ableism, I realized that forgiving too much will only hurt in the end when the person refuses to change or listen. To join in the conversation, here is the link to the original tweet: https://twitter.com/NeuroRebel/status/1513170672180244481 This article is part of a continuing monthly series at Autism Empowerment and Spectrum Life Magazine called #AskingAutistics by Lyric Holmans. To read past articles and get connected with this important series, visit www.spectrumlife.org/askingautistics

@RobertWmRuedii – My trust is complicated. People might mistake me for being too trusting because I treat everyone like my outer circle friends. People also only lose trust from me on one narrow subject. I have a huge list of people I don’t trust to discuss politics civilly, for instance. Lyric Holmans is an autistic self-advocate from Texas who runs the neurodiversity lifestyle blog Neurodivergent Rebel. They are also the founder of NeuroDivergent Consulting. Lyric is known as the pioneer of the #AskingAutistics hashtag, where simple questions prompt open-ended responses that Autistic people can easily chime in with, and invites participants to engage each other in conversations related to the topic. This hashtag connects NeuroDiverse people who would not otherwise have a reason to engage with each other, and fosters collective understanding of the Autistic experience. www.neurodivergentrebel.com

www.spectrumlife.org

15


LIFESPAN

A Day in the Life of Jennifer Cook Author, Speaker, Consultant, and Mom By Jenny Bristol, Illustrations by Rebecca Burgess Jennifer Cook is a bestselling author of many books about autism, including the popular Asperkids series—aimed at autistic kids and parents of autistic kids—and her memoir Autism in Heels: The Untold Story of a Female Life on the Spectrum, where she talks about her own autistic journey. Her passion and enthusiasm are clear in everything she writes. When she’s not sharing her own experience in writing or helping others navigate the tricky and often-confusing neurotypical world, Jennifer is speaking to groups including high-profile audiences, consulting about autism with the folks at Sesame Street, or being the on-camera expert on the Netflix show Love on the Spectrum – U.S. Jennifer was diagnosed as autistic when she was in her mid-30s. She is a busy professional and mom, always figuring out new ways to balance her family life and responsibilities at home with her work as an author and autistic consultant in the media. This includes knowing when to ask for help, something that’s important for all of us to remember. What does a typical work day look like for you? How do you juggle your various efforts, from writing to being an expert consultant to public speaking? OK! So—my days are a tapestry of all the capes I wear—a million different “autism-related” projects, momming, and, if I can help it, a bit of adulting (although my executive functioning definitely likes to play havoc with the last one!)... Typically, the day begins at 6:45, getting my middle guy up and ready to head off to high school, then it’s on to getting my youngest ready for middle school. (About to quote “9 to 5” here)—it’s very much a “tumble out of bed and stumble to the kitchen, pour myself a cup of ambition and yawn and stretch and try to come to life.” I’m a Today Show devotee (interned there in college), so that’s my go-to while I wait for consciousness to kick in. By 10:15, I’m online, checking social media, replying to readers, and editing my calendar as I go through messages from emails—I find that if I don’t do things in order and as soon as the requests come in, I get discombobulated and lose track of what I’m meant to do.

minutes—it’s my sanity-inducer. I’ve seen shirts that say, “I ride to burn off the crazy,” and for me, that’s true. My nervous energy is transformed into Personal Bests, and I find I’m much calmer throughout the day if I get in some good, long aerobic work. Afternoon is when I try to schedule interviews and any calls that I need to make—and then it’s time for the younger kids to come home from school (my eldest is a senior and homeschools, but she’ll be in college by the time this story runs). Then, it’s full-time homework assistant, chef, and general psychologist for all! What hobbies or interests do you have outside of your work? OMGosh, I wish I had a better answer—but the truth is that beyond exercise, work feels a lot like a hobby! That is something that I don’t take for granted. How does being autistic help or hinder your work or hobbies? (Jennifer feels this is best answered by excerpts from her memoir, Autism in Heels.) One of the most delightful experiences for an autistic mind is diving deep, or at least an autistic mind like mine, is immersing myself in some subject that has captured my fancy. And by “some,” I really mean any subject. Several years

Around lunchtime, I hop on my stationary bike for about 75 Continued on next page

16

www.spectrumlife.org

16


A Day in the Life of Jennifer Cook, continued from page 16

ago, I compiled a “not-your-average” coloring book featuring the art of people on the spectrum.

with some kind of almost secret code? —Well, intrigue turns to voracious hunger for learning.

As I sorted the pieces into common interest areas, one jumped out at me: the Fibonacci sequence and the Golden Ratio. First, I was intrigued because I knew nothing about this apparently famous topic. Second, I’ve never been interested in high-level math. But this “magic ratio” number sequence thing somehow tied together the patterns of quills on a pinecone, proportions of human finger bones, dimensions of the Milky Way’s spirals, features of Mona Lisa’s face, intervals between musical harmonies, and the architecture of the Parthenon.

It always does. Be it genealogy or the history of the English language or cake decorating, if my curiosity, imagination, and heart are captured in some way, I am going to learn and learn and learn and lose myself in the satisfaction of it all. Combine the poetic, the human, and the academic, and it’s a veritable Siren Song to my soul. Less elegantly put, I latch on like a little dog at your ankle and will not let go.

Anything that innately integrated some inborn sense of aesthetic beauty with everything from art to religion to space

Of course, in the meanwhile, I may well forget to pay the power bill until they leave a message on my answering machine (just happened). But, everything’s a tradeoff. Continued on page 18 www.spectrumlife.org

17


A Day in the Life of Jennifer Cook, continued from page 17 Executive functioning skills are often inconsistent with others’ expectations. It makes perfect sense, really, to assume that a child who can recite the name of every Greek god or sing entire scores of Broadway musicals should, clearly, be able to remember where her homework log is. Or where her shoes are.

that we all need theme songs to make us feel better when the world gets us down. Now you may find that what you actually need is an entire playlist; moods and circumstances do change. But that’s in the details, and we’re going for big picture. While you think about what your theme song should be, let me offer you mine. It’s been my favorite since I was about ten years old; it lifts me up, and it is, I hope, the legacy I leave with you: “Lean On Me” (seriously — go listen to it and know I’m genuinely sending my heart to you). When the world has left you feeling tired or scared, unwanted or empty—you can lean on me. Lean on my pick-yourself-up-and-brush-yourself-off moments.

Miss I-Wrote-A-Bestselling-Book-in-Three Weeks ought to be able to plan enough time for a shower and grocery shopping, let alone remember a friend’s birthday, get to—well, anything, on time, pay her bills, exercise, bring dirty dishes out of her bedroom, take out the trash, do some laundry, and even go to the dentist. Only usually, I don’t.

That’s awesome! Any other advice?

I try. I use alarms and reminders. And I make sure I’m there for every important school event so my kids will never wonder if they mattered enough. But my mother still helps with playdates and laundry and food shopping. I know that I go nonstop. I know I give my everything all day, every day. Still, I can’t do it alone, even though most people probably believe otherwise.

Go out in the world. Try. Mess up. Try again. Be the quirky, unique, fabulous person you’re meant to be. Make this world better, funnier, kinder. Be silly, be intense. Be scared. Be brave. Be defiant. Be curious. And always, always, always—for all of us—be glad, be proud. Be you.

What advice would you give to a young or teenage autistic person to help them live their best life, or what advice would you give an autistic adult to help them feel supported in their continuing journey? So—the reason I wrote my second book was exactly that—to provide a set of “directions” for the Game of Life that I gleaned after being diagnosed, so others wouldn’t find themselves stumbling in the same potholes. Here’s something from the intro that I think partially answers the question, and then something from the conclusion. From the introduction to The Asperkid’s Secret Book of Social Rules: In coming to understand I was a bit differently-wired, I’d realized that most of my sticky, kind-of-awkward, or occasionally-really-stepped-in-it moments in life had happened when I’d unknowingly violated some unwritten social rule. Since those were not exactly situations I wanted to repeat, I started making my own sort of... dictionary. A reference material just for myself. I’d study interactions between people. Boil them down to the simplest truths—facts only. Then keep track of all the new information I learned and see how things went. A decade, awards, and tens of thousands of copies in five languages later, the answer is wildly clear—yes, a lot of us need this book of secret rules, and yes, like a lot of us, I’m not always the best judge of my own ideas. Which is why I’ve got one “rule” to add before we get started. Even if you think it’s crazy off-base, listen when someone says, “You can do it. People will care.” The truth of it may completely change your life. This is from the conclusion of the 10th Anniversary Edition of The Asperkid’s Secret Book of Social Rules—I think it says it best: Feelings are tough to nail down and communicate. We may talk and talk, but rarely do we feel understood. Enter... your theme song. You heard me. A theme song. I firmly believe

18

www.spectrumlife.org

What’s the best advice you’ve been given? When you are feeling down, lift others up. It changes everything. What is it like to work on Sesame Street? For some of us, you’re living our dream! Are there any Muppets you relate to other than Julia? Of all the things I’ve done, working with Sesame Street feels the most sacred to me. You might say that Cookie Monster was my first “special interest”—as a toddler, whenever I saw him anywhere, I used to scream “Ooogly-goo!” until I was hoarse (apparently that was my word for googley... as in googley eyes). One time, my mom took me into a Toys “R” Us where there was a whole aisle of Cookie, and she said she thought I might explode of elation. Can’t you just imagine a little spectrum-y girl surrounded by her fuzzy and blue “idol”?? Love knowing what that must’ve been like! Oh... and to this day, There’s A Monster at the End of This Book (starring our beloved Grover) is my all-time favorite children’s book. (Special insight? I can do rock-star level Grover and Cookie impressions, thank you! So I read that book in full Grover-voice to my kids.. and intend to do the same someday to my grandkids.) The funniest thing about Julia is that I was so busy being thrilled during her development, I managed to miss the fact that she ALSO had red hair and green eyes until my own kids pointed out, “Mom! She looks just like you!” Talk about missing the forest for the Muppet. But yes—I have said before and will say again that, now in writing a book for them, I am WELL aware of the weight and privilege putting words into the mouths of the Sesame Street friends. I take the responsibility very seriously... and... giddily. Because, COME ON! This is SESAME STREET, and that is just as joyous as it gets!!!! Continued on next page

18


A Day in the Life of Jennifer Cook, continued from page 18 How have your views about autism changed since you were first diagnosed? THIS. :) The transition from “Aspie” to autistic. To expand, here is an excerpt from Autism in Heels where Jennifer answers the frequently asked question: Asperger’s or Autism? Which Is It? The short answer is “yes.” I was diagnosed with Asperger Syndrome (AS) in 2011. Yes, AS was always considered part of the autism spectrum. In reality, though, AS was an entirely distinct medical diagnosis that indicated that an individual had an average to above average IQ and had experienced no significant early speech delay. Many “Aspies” (an affectionate term coined by author, selfadvocate, and now personal friend, Dr. Liane Holliday Willey) found having a name for our “niche” to be really positive in terms of community-building. Many who might not have thought of themselves in terms of autism did find their way to Asperger diagnoses, and the vast Aspie support network. For sure, that group included me and my children. As a layperson, I never would have thought of my bright, chatterbox daughter or her equally quick brothers as “autistic.” I wouldn’t have sought psychiatric and/or psychological insight. Not for them—or for me. There is, after all, a reason that I named my book series “Asperkids.” Used as we did, the words “Asperger Syndrome” were tools of social subversion, winding around ignorance and stigma, creating pathways toward self-empowerment all around the world. The trouble was that sometimes, clinicians, diagnosticians, and researchers used AS as a hierarchical term. That habit then filtered into vernacular use among appearanceconscious parents and insecure individuals who used it to mean “not autistic like them.” And, if we became a house divided against ourselves, none of us would be left standing. In 2013, the American Psychiatric Association eliminated AS as an independent diagnosis and amended the criteria for Autism Spectrum Disorder (ASD) to include the “Aspie” profile, removing IQ and early speech from the equation entirely,

highlighting, instead, sensory processing and social interaction, common areas of uniquely autistic experiences. The transition has not been entirely smooth or without unresolved issues, but—five years on, I believe it has been for the greater good. Defined by commonality instead of difference, we more accurately embody autism. It is now our charge to explain that regardless of how obvious our autism is to others, it is equally present to the person living it. It is our job to correct those who reject some for being too “high-functioning” or forget those who are more visibly challenged. It is our job to speak for those who can’t and to have compassion for those who can. To the research community, educators, scientists, psychologists, and most importantly—to regular folks like you and me... the best answer isn’t that we’re Aspie or that we’re autistic. The best answer is... we aren’t any one word. We are the spectrum. What are the best ways for people to connect with you? Web & Books: www.jenniferotooleauthor.com Instagram: @JenniferCook_Author Twitter: @Asperkids Facebook: Jennifer Cook, Author Is there anything else you’d like to share with Spectrum Life Magazine readers? I’m so excited to be part of Love on the Spectrum U.S.!!!!!!!! (available starting May 18th, 2022 on Netflix). Trailer here: https://youtu.be/86TrUPszc9Y Editor’s Note: The original interview included additional questions and longer answers. Due to space constraints, we didn’t have room, however we encourage you to check out Jennifer Cook’s memoir, Autism in Heels and to visit www.SpectrumLife.org for our extended version interview with links to her other books and resources.

Jenny Bristol is a Gen-Xer who was diagnosed autistic at age 45 and has been having a series of lightbulb moments ever since, finally understanding her entire existence. She is an autistic advocate, freelance writer and author of several books, Editor-in-Chief of the geeky parenting blog GeekMom.com, and parent to two incredible autistic adults. She works hard to promote the social model of autism rather than the medical model, encouraging people to understand that a child’s behavior is a form of communication and a reflection of their inner struggle, not something to be punished. Visit www.JennyBristol.com

Rebecca Burgess is a comic artist and illustrator working in the UK, creating award winning published and small press work. Along with drawing comics for their day job, Rebecca also loves drawing webcomics in their free time. Being autistic, they are particularly passionate about bringing more autistic characters into comics and stories! Outside of drawing comics and cuddling their cat, Rebecca also loves playing RPGs with friends, going on deep dives into history and growing vegetables in their humble Bristol garden. Visit www.rebeccaburgess.co.uk

www.spectrumlife.org

19


recreation

IN THIS SECTION Columbia Play Project ................................................................................... 21 Stories by LGBTQ Autistic Authors Everyone Should Read ............... 24

Photo courtesy of Riff Creative Studio

INCLUSIVE WAYS TO HAVE FUN

20


RECREATION

Columbia Play Project STREAMing inclusive play every day By John Krejcha From the very beginning, Columbia Play Project has been dedicated to bringing positive play experiences to kids regardless of ability level, economic status, language, or any other barrier that can make a child feel left out. Play is obviously fun, but it is also a crucial part of human development. Inclusive play at an early age sets a positive tone to continue inclusion in school, neighborhoods and communities. Founded three months before COVID-19 hit our nation, Columbia Play Project’s mission has become even more important. When the nearby Portland Children’s Museum closed its doors in June 2021, there was a huge hole left for larger-scale play opportunities in the Portland metro area. To learn more about their vision, we recently connected with Columbia Play Project Board Chair, Jeanne Bennett and Mary Sisson, Board Secretary. Hello Jeanne and Mary! What is the Columbia Play Project? Columbia Play Project is a nonprofit dedicated to exploratory play for kids and families in Southwest Washington. Our ultimate goal is to build a world-class, 30,000-square-foot children’s museum, but we’re not waiting for that to bring play opportunities to kids around the county! Our first meeting was in December 2019. We became a 501(c)3 in January 2021. Mary: As owner of Kazoodles toy store for 14 years, I was immersed in the importance of play. It’s crucial for children from the very start, as they develop their brains, muscles, emotional intelligence and every other skill they will use all their lives. We took our grandsons to the Hands On Children’s Museum in Olympia, WA and I came home thinking, Vancouver needs this! When I found out Jeanne Bennett and architect Casey Wyckoff were already talking about it, I jumped in. I expected at that first meeting for Casey to show us plans for a fabulous building, but instead he talked about the importance of play. I was hooked. Jeanne: My interest was like Mary’s. I agreed that play is crucial to children’s development and with 13.5% of Clark County’s kids living in poverty, opportunities to support educational achievement were necessary to our community’s future success. As play helps kids to grow, cultural activities support development of communities and create environments in which people want to live and work. From an economic development standpoint, a children’s museum, as well as

restaurants, parks and other amenities, creates an attractive environment for businesses. Business success coupled with educational success supports a healthy community. (Editor’s Note: The remaining interview answers were joint responses) Why did you choose the name Columbia Play Project? From the beginning, we wanted to reflect the history, geography and culture of this amazing area we call home. The Columbia River is central to all of that. And play is central to all we do. Our theme is STREAM — Science, Technology, Reading, Engineering, Art and Math, which ties perfectly with the Columbia. Why is it so important to have a place dedicated to play in Southwest Washington? Play is how kids learn who they are, what they love, and how to interact with other people. Not all kids have access to incredible play experiences, and we want to make purposeful (and fun!) play available to all kids in the area. Plus, it rains here a lot. That’s why an indoor space is so important. Why is inclusion around play important? From the very beginning, we’ve wanted to bring play experiences to kids regardless of abilities, economic status, language, or any of those other barriers that can make some kids feel left out. You had a feature in Spectrum Life on Cody Goldberg of Harper’s Playground; he has been on our board from the beginning. (See Winter 2021 issue or bit.ly/harperincluded) Columbia Play Project shares Cody’s commitment to inclusive play and looks forward to the opportunity to build a children’s museum using similar methods as Harper’s Playground. Cody’s input is invaluable. Writing our equity statement took a lot of deep thought and discussion, but it’s at the heart of all we’re doing. How are the voices of those with disabilities included in what is going on within Columbia Play Project? One space at the Hands On Children’s Museum that really impressed me was a sensory room. After the joyful noise of the rest of the museum, the quiet in that room was palpable. Plus they had a variety of sensory toys out, along with a Continued on page 22 www.spectrumlife.org

21


Columbia Play Project, continued from page 21

I’d already learned a great deal as owner of Kazoodles as families would come in seeking toys for specific things their kids were working on in therapy or just to get them through the school day. I was excited to think of the possibilities with a children’s museum. There’s a lot to be learned from other museums. The Hands On Children’s Museum and the Louisiana Children’s Museum are among those that open early on Sundays for families of kids with autism or sensory needs. The Children’s Museum of Phoenix offers a video to introduce kids to what they will experience — even the restrooms and drinking fountains — to lessen anxiety with this new adventure.

The Children’s Museum Cleveland partnered with the Monarch Center for Autism to create a Welcoming Spaces program. They offer a tool kit at the ticket desk with noisecanceling headphones, sensory toys, and visual supports. Families can go online and design their own visual schedule, with pictures of everything from parking to check-in and all the exhibits, so they can plan their expedition and check off experiences as they go. They also have a sensory-friendly room, plus accommodations for families that call ahead. Of course, we would love to partner with Autism Empowerment, the Northwest Down Syndrome Association, and others who can advise us from their lived experiences. Describe the different phases of your project and the timeline for each. Phase 1 we might call the Covid Pivot stage. We couldn’t wait to get exploratory play out to kids, so in spring 2021, with a carload of outdoor toys, games, and giant bubbles, we started doing Pop-Up Parties in the Park at different parks

22

www.spectrumlife.org

around the county. We partnered with Vancouver Parks and Recreation to visit a different park every week in July and August, and we have a slate of pop-ups on our calendar for this year. Meanwhile, one of our teams created a play kit, “Welcome to the Ecosystem,” for exploratory play at home. Phase 2 – Mobile museum: The design and fundraising are both in the works now. Phase 3 – Brick-and-mortar museum: It will be a building with permanent and rotating exhibits, indoor and outdoor playground space, labs – music, art, science, a theater with room for dress-up and performance, computers, and a curated children’s library. But no, we don’t yet know where it will be. We’re shooting for 2026.

How did the closure of the Portland Children’s Museum affect the work you have set out to do? First of all, it made us sad. We had taken our kids and grandkids there and hated to see that resource close. It also added to the urgency to get this project accomplished. Not only do we need assets like a children’s museum right here in Clark County, instead of always having to head to Portland for our cultural experiences, but now Portland families would need a great place to play, too. What steps are being taken to bring a brick-and-mortar museum to Southwest Washington? There’s a lot of fundraising and grant writing going on. We have a feasibility study in the works, and have interest from folks in Olympia and Washington, D.C., as well as here in our community. Board vice president Casey Wyckoff with LSW Architects has designed many of the schools around here, and we expect nothing less than fantastic from his team. Continued on next page

22

Photos courtesy of Riff Creative Studio

description of how that toy could be used and how it benefits kids. There were signs explaining things like stimming and spinning. That opened my eyes to the possibilities of providing play experiences geared to kids with autism and sensory processing issues.


Columbia Play Project, continued from page 22 Talk more about the Play Kits you have to offer. “Welcome to the Ecosystem” is based on six animal characters from the Columbia River: Bess the Beaver, Doug the Slug, Si the Sturgeon, Mo the Mountain Goat, Ryder the Spider, and Gale the Goldfinch. The kit includes a wonderful book full of information, projects, and indoor and outdoor activities, all created by CPP folks and Riff Creative. Wood cut-outs of all the characters are included for kids to assemble, and stickers and colored pencils are also tucked into the canvas backpack. Some donors have bought multiple kits to distribute to nonprofits that serve children, in line with our goal of reaching all kids. This one is geared to ages 3-7. We have more ideas in the works; the next would focus on the Columbia’s dams, ships, and bridges. The phase after the Play Kits is a mobile museum. Can you talk about that? This will take play experiences to where the kids are — schools, parks, child-care centers, churches, you name it. The van and trailer will be packed with exhibits of fun and learning, all related to the STREAM theme. Some of the people on our board have amazing vision and imagination to create all this. Our current Pop Up Parties will be folded into the mobile museum.

Photos courtesy of Riff Creative Studio

How is Columbia Play Project making sure inclusion for all is part of Columbia Play Project? Inclusion is written into our DNA. We are seeking board members who can bring different points of view and experiences to the table. We are looking for input from people who can help us shape the most inclusive play we can imagine. We started last year with a listening session with the Clark County Youth Council, whose focus for the year had been diversity. We’re learning from other museums. When the time comes to plan the exhibits and spaces, we will be soliciting feedback to hear what people need from this museum. Whether that is support with language, physical accessibility, access without cost or whatever else comes up, we promise to listen carefully and incorporate solutions widely. How can people connect with Columbia Play Project and get involved? Website: columbiaplayproject.org Facebook: www.facebook.com/columbiaplayproject On the website is the schedule of all our events, and we invite people to come out and play! Also through the website you can sign up to get news, volunteer, or donate. It’s those donations that will make the magic happen for our community.

“Jester” John Krejcha is co-founder of Autism Empowerment and serves as Programs Director. He serves on the Editorial Advisory Board

What else is important for Spectrum Life Magazine readers to know?

of Spectrum Life Magazine and is a co-host for the Autism Empowerment

We appreciate your ideas and feedback as we create this amazing resource for all the kids in our community. We’re starting from scratch, and you can help us get it right!

of two amazing children and their feisty cat, Zula. While John is the only

Podcast. John is married to co-founder Karen Krejcha and is the father one in the family who is not on the autism spectrum, he identifies as a neurodivergent and loving ally.

www.spectrumlife.org

23


RECREATION

Stories by LGBTQ Autistic Authors Everyone Should Read “Autism, like many things in life, exists across a spectrum.” By Adriana White While the question of whether a person is autistic has a binary yes or no answer, the way that autism affects an individual life can vary greatly. Autism, like many other conditions and disabilities, is complicated. For many of us on the autism spectrum, our lives are further complicated by layers of additional spectrums. Gender identity is one such spectrum, as is sexual orientation or attraction. Anecdotally, many have noticed that there seem to be “a lot of LGBTQ+ autistic people.” And now researchers are finding that autistic people are, compared to the general population, far more likely to be LGBTQ. Working as a middle school librarian, I am often struck by how effortlessly my students talk about their identities – both who they are and who they love. But I know that there are many others who cannot be as open. Young people who are LGTBQ face far too many difficulties in life – discrimination, bullying, trauma, and more. These young people are four times more likely to die by suicide than their cisgender and heterosexual (or “cishet”) peers. The numbers are even higher for autistic people, who are ten times more likely to die by suicide than the general population. Statistics like these make me fear for the lives of our young LGBTQ autistics. I worry about all the unseen and unheard young people who are struggling to survive in a world that doesn’t quite get who they are. A world that doesn’t understand that they are just different, not broken. “These kids need to hear stories about people like them. Their cishet peers need to hear these stories, too. The adults who work with or live with these kids need to hear these stories, and realize that it is okay for their kids to live their own unique lives.” The LGBTQ autistic adults who felt so alone and misunderstood in their childhood – many of whom are still struggling to come to terms with who they are and how to talk openly about it – also need these stories. For far too many of us, it is literally a matter of survival. The following list features some amazing books by LGBTQ autistic authors. Several of these books also include main characters who are autistic and LGBTQ. (Note: I have included pronouns for each author, if they have provided any online.)

24

www.spectrumlife.org

Uncomfortable Labels: My Life as a Gay Autistic Trans Woman by Laura Kate Dale https://laurakbuzz.com In her memoir, Dale shares her experiences with being gender-nonconforming, gay, and autistic – taking readers on a journey from her confusing childhood to a much happier adulthood. Along the way, she talks about a wide range of topics, including mental health, addiction, suicide, sensory issues, special interests, and so much more. While some of these ideas are definitely heavy and serious topics, the overall tone of Dale’s book is a hopeful one. She writes openly about the difficulties she has experienced in her life, and shares strategies that could be useful for others. She also emphasizes the need for more autism-friendly LGBTQ spaces. Dale is also the editor of the crowdfunded anthology, Gender Euphoria: Stories of Joy from Trans, Non-Binary and Intersex Writers. Monsters in My Mind by Ada Hoffmann (she/they) www.ada-hoffmann.com This anthology is a collection of several smaller works by Hoffmann. Many of these short stories and poems fall under the banner of “speculative fiction,” which includes genres like science-fiction, fantasy, and horror. Hoffmann describes the theme of the anthology as “being different, monstrous, or out of place, and hoping to somehow be accepted that way” – an idea that is likely to resonate with many LGBTQ and autistic readers. Hoffmann’s stories feature several characters who are autistic and queer (though they’re not always overtly labeled as such), and being able to see these characters at the center of their own stories is a fantastic experience. Hoffmann has also written two novels for adults – The Outside and its sequel, The Fallen. On her website, Hoffmann has also reviewed and ranked representations of autism in several books, as part of her Autistic Book Party series. Dragon Pearl by Yoon Ha Lee (he/him) www.yoonhalee.com Published under the “Rick Riordan Presents” imprint, Lee’s novel mixes Korean mythology with science-fiction and

Continued on next page

24


Stories by LGBTQ Autistic Authors Everyone Should Read, continued from page 24 fantasy, and the end result is a fascinating and fantastic read about the importance of friendships and family. Dragon Pearl is notable for its inclusion of queer and nonbinary characters, and for the way that it doesn’t make a big deal out of their inclusion. Lee’s book portrays a world where pronouns are included on military uniforms, and families come in a variety of shapes and sizes – and it’s all normalized and accepted without hesitation. Young readers need more books like this one in their lives. Lee has finished writing the sequel to Dragon Pearl, titled Tiger Honor which came out in early 2022. Lee also writes novels for adults, most notably his The Machineries of Empire series. Ana on the Edge by A.J. Sass (he/they) https://sassinsf.com This wonderful middle grade novel is about ice skating and being true to yourself. Ana is rising in the ranks of the competitive – and very gender-coded – world of figure skating. After befriending Hayden, a transgender boy, and learning more about gender identity, Ana realizes that she is nonbinary. Faced with this new information, Ana must decide how to balance her identity with the expectations of her friends and family. Ana tries out different pronouns, comes out to her loved ones, and shows readers that figuring out who you are is a journey – and that you shouldn’t be afraid to embark on it. Sass’s second novel, Ellen Outside the Lines, came out in Spring 2022 and features a queer, Jewish, and autistic protagonist. Testing Pandora by Kaia Sønderby Twitter @KaiaSonderby This novella is a prequel to the novels in Sønderby’s Xandri Corelel series, Failure to Communicate and Tone of Voice.

The series tells the story of Xandri, a young autistic woman who has a special talent for understanding alien life. Readers get a glimpse into Xandri’s past, and see how she got her start as a special kind of diplomat and negotiator. Xandri is a Pandora, the result of a rare natural birth in a universe that, through eugenics, had previously eliminated disabilities completely. Xandri’s autism is strange to many of her peers, and for all her skill in understanding alien life, Xandri still struggles to understand the other humans around her. Xandri is also bisexual, and in this prequel, meets some crew members that she will have relationships with later in the series. Sønderby has finished the third Xandri Corelel book, and hopes to see it published soon. She is also working on two additional novellas for the series. Peta Lyre’s Rating Normal by Anna Whateley (she/her) https://annawhateley.com This Australian book hasn’t come out in the U.S. yet, but can be found online and it is definitely worth seeking out. The story centers on Peta, who is autistic and also has ADHD (as does the book’s author). Peta also struggles with sensory processing issues, and has to put a lot of effort into accommodating for herself. Peta has had to learn a lot of rules for how to fit in, but all of her social skills training fails to prepare her for how it feels when she falls in love with her new classmate – a girl named Sam. Peta’s been taught that she has to follow the rules if she wants to be “normal,” but hiding who she really is (also known as masking) has a cost. Peta must decide if rating normal is truly worth it, and which rules in life are meant to be broken. Whateley’s next book, Tearing Myself Together, which focuses on two neurodivergent classmates of Peta’s (one with EDS, the other with skin cancer), comes out in Australia in 2022.

Continued on page 26 www.spectrumlife.org

25


Stories by LGBTQ Autistic Authors Everyone Should Read, continued from page 25

Queens of Geek by Jen Wilde (she/they) https://jenwildebooks.com This was one of the first #OwnVoices autistic books that I read, way back in my early days of library school. I had never felt so seen. This book tells the story of two protagonists: Taylor, a plus-size autistic girl who also has anxiety, and Charlie, a Chinese-Australian girl who is bisexual and has a huge crush on Alyssa (a queer Black actress/vlogger). Taylor is also dealing with her own complicated feelings for her best guy friend Jamie, and when she and Charlie arrive at the SupaCon comic convention, everything changes. The diverse representations in the story are all very well-written, and the friendship between neurodivergent Taylor and neurotypical Charlie is wonderful and sweet. Wilde writes about autism, anxiety, bisexuality, sexism, and so much more in an amazingly authentic way. Wilde has also written two additional YA books – The Brightsiders and Going Off Script – which also feature queer protagonists.

Not all of these stories are specifically about being autistic or LGBTQ. They’re not all “issues” books, or books about trauma and pain. And that’s a good thing. We need a wide range of stories to represent our many different life experiences. We need adventure stories, romance, and stories about family. We need stories of joy, love, and acceptance. We need stories of hope. Seeing LGTBQ autistic characters (and authors) can mean the world to someone who is struggling to figure who they really are. I think that hope also exists on a spectrum. Some days, we may not be able to feel it as strongly as we used to. Some days are darker than others. On days like those, I hope that you can find comfort in stories like these. I hope you read them and know that you are not alone.

All These Authors, and So Many More This list could have easily been twice as long! Some LGBTQ autistic authors have been featured previously at Geek Club Books, such as Marieke Nijkamp and Yenn Purkis and Rivers Solomon. Author and #OwnVoices originator Corinne Duyvis released a new book last year, The Art of Saving the World. Artist and author Rebecca Burgess (see A Day in the Life of Jennifer Cook, page 16) recently released a graphic novel, How to Be Ace: A Memoir of Growing Up Asexual, and she has another book (with an autistic protagonist!) due out in 2022. Erin Ekins has written what will likely be an essential text for LGBTQ autistic teens – Queerly Autistic: The Ultimate Guide for LGBTQIA+ Teens on the Spectrum – which came out in April 2021. The upcoming MG novel Izzy at the End of the World by K.A. Reynolds features a young bisexual and autistic protagonist. Nonbinary British author Lizzie Huxley-Jones edited Stim: An Autistic Anthology, which features work by a diverse group of autistic writers. And there are LGBTQ autistic authors like Nicole Panteleakos and Hillary Monahan, and so many more.

Adriana White is an autistic school librarian and former special education teacher. Since being diagnosed with autism in her 30s, she has set out to create more autism-friendly schools and libraries. She is also passionate about supporting #OwnVoices books by autistic authors, and thinks that every library collection should include them. Adriana has earned Master’s degrees in Education and Information Science, with specializations in Special Education and Storytelling, respectively. She can be found on Twitter at @Adriana_Edu, where she tweets about autism, libraries, and diverse books – especially books by #AutisticAuthors! This article was originally published at Geek Club Books in March 2021. Permission for us to republish has been granted. Updates to author publishing dates were made in May 2022.

“All of these authors, and others like them, are writing desperately needed stories that show us that it’s okay to be different.” 26

www.spectrumlife.org

26


Sign up for the Community Rewards program by linking your Fred Meyer Rewards Card to Autism Empowerment at www.fredmeyer.com/communityrewards. You can search by our name or by our non-profit number WA330. There is no cost to you! Thank You!

Washington State

Call 888-754-8798 ext.1 Visit us online at: https://ddetf.wa.gov

Find out if you’re eligible A Washington State ABLE Account is a flexible and convenient way for people living with disabilities to keep their current benefits while also investing in their life to come. www.spectrumlife.org

27


education KNOWLEDGE TO EMPOWER FAMILIES AND INDIVIDUALS

IN THIS SECTION Bluebee Teevee Autism Information Station.......... 29 Exams! Exams! Exams!.........................................................32

26

www.spectrumlife.org www.spectrumsmagazine.org

28


EDUCATION

Bluebee TeeVee Autism Information Station Behind the scenes with James Sullivan

By Karen Krejcha

topics. Best of all? The show is autistic-led. The series is written, performed, filmed, and edited by two autistic young adults. James Sullivan is the host, scriptwriter, editor and filmmaker. Jonathan (Murphy) Cormur does the voice over acting for all the Bluebee Pals co-hosts. We interviewed Jonathan Cormur in the Spring 2022 issue of Spectrum Life Magazine about his voice over career and his work with the Dorktales Storytime Podcast. Now we’re pleased to go behind the scenes with James Sullivan to learn more about his work with Bluebee TeeVee. Hi James! Thank you for your work and devotion to empower autistic children and their peers. What were some of your early childhood interests? I always enjoyed reading and gaming. Sometimes I would religiously watch the same movies and TV shows on tape over and over again. I almost got the scripts of said TV shows and movies down to a tee and could even recite them. This was a skill that I would later hone in on when I got into acting in middle school. When were you first diagnosed on the autism spectrum and what do you remember about that experience? The Bluebee TeeVee Autism Information Station is home to a series of eight webisodes created to empower autistic children and educate their peers about autism. Think Schoolhouse Rock or Blue’s Clues meets Mister Rogers Neighborhood in a quirky blend of educational entertainment. Each episode is about 5-7 minutes in length and features the host James Sullivan having a friendly chat with a Bluebee Pal—Sammy the bear, Leo the lion, Lily the lamb, Winston the dog, or Riley the zebra—to help children have a deeper understanding and connection to those who are autistic. Episodes are done in a friendly, clinically correct and respectful manner with humor and pop references thrown in for fun. This series was originally produced for the autism nonprofit Geek Club Books in collaboration with Kayle Concepts, Bluebee Pals, and Quality Services for the Autism Community (QSAC). When Geek Club Books closed in December 2021, permission was given to the nonprofit Autism Empowerment to manage the Bluebee TeeVee YouTube channel and continue to share the content. The webisode series focuses on friendship, bullying, communication, safety, and other important autism-related

I was diagnosed at roughly age 10. About the experience itself, I remember going in for psychiatric testing on a weekly basis. I remember when my parents first told me about the diagnosis; it was as if a whole lot of sense was made, like why I felt different from everyone else somehow. I also remember going in for auditory training sessions on a near daily basis when I was in sixth grade. It was an interesting experience. How did your passions encourage you in your education? My fascination with the screen and cinema led me to want to learn more and more about it. I knew I wasn’t going to make it as an actor, so I figured I would try to do some in front of the camera and behind the camera. I wanted to learn everything about how movies were made and that’s what led me to pursue a Bachelor’s Degree in Cinema Production. Originally I wanted to make feature films, but I was never able to make it into the industry, so instead, I went for making videos and that’s how I eventually got into Bluebee TeeVee. Continued on page 30 www.spectrumlife.org

29


Bluebee TeeVee Autism Information Station, continued from page 29

What is Bluebee TeeVee and how did you become involved with this project? Bluebee TeeVee came around when I had been doing work for several years with the autism nonprofit Geek Club Books, running my own Q&A session show called “Tud Sense,” in which I answered questions about what it was like to be on the spectrum. The founder and executive director, Jodi Murphy proposed that I do this show as a sort of Autistic Blue’s Clues meets Mister Rogers and we took it from there. How did you become involved with Geek Club Books? I got involved with Geek Club Books when my own family decided they were going to try and get into the nonprofit scene with a toy recycling business. They got in touch with Jodi to try and get the word out and eventually that just led to me working with them instead. Who is the webisode series geared towards? The webshow is geared mainly towards younger audiences, around elementary school age. But it’s also geared towards their parents. What are the topics of each episode? In order, the episodes are about what autism is, what people who have it are like, how they communicate, how to maintain friendships with an autistic person, bullying, autism acceptance, what autistic people want you to know, and lastly, autism representation in media. Some of the episodes also had accompanying episode guides and further educational resources. Tell us about that. Usually, Jodi would take care of that angle of things. Episode 04, which we labeled “The Friendship Game,” came with an online activity booklet for the classrooms that showcased it. Fun stuff to do with your autistic buddy and all that.

30

www.spectrumlife.org

The last episode in the series talked about Autism in Media. Why is authentic autistic representation important? (How good of a job do you think media is currently doing?) I think that we’re learning more and more about how to accurately represent autism in media, but for every step forward there’s also a step back. You know, for every show out there that tries to just show an autistic character as a character and nothing more, you have those that also fall back on just portraying autistic people as people with mental superpowers or overly compulsive habits. It might be partially accurate, but it’s a cookie-cutter representation. In addition to being on camera, you were also heavily involved in the scriptwriting and production. What kind of work goes into creating and producing an episode? The type of work that goes into writing the episode comes with a lot of bouncing of ideas back and forth between myself and whoever is producing. Jodi would come up with the topics and what she would want me to talk about and I would write up an outline for an episode to run by her. If she liked it, I’d move forward with writing the script and from there she would edit everything and try to come up with what she wanted me to say. From there, I would storyboard out the script, Jonathan would record his lines for the Bluebee Pals that were being used in the episode and I would film and edit it from there. Who else did you collaborate with on this project and what were their roles? As I mentioned before, Jodi would be invested in editing the script and getting the final say in everything and Jonathan would be doing his voice acting. Bluebee Pals was essentially our sponsor for the show and QSAC would be putting in their two cents along with Jodi. Continued on next page

30


Bluebee TeeVee Autism Information Station, continued from page 30 Which episode meant the most to you and why? I think the most fun episode I did was the “Friendship Game” episode. I got to do away with the usual formula approach for the series and do something more resembling a game show, complete with lights, music and everything. It was a blast doing all the titles for that one, questions and answers and all that. Just like a real game show. Which episodes have had the most views? The very first episode “What Is Autism,” still has the most views to this day. It was fresh out of the oven and Jodi was pushing it like crazy, having it shown in classrooms and everything. I was thrilled to see those numbers and feel like I was making a difference. From there on up through episode 05, it was pretty solid into the thousands. I actually had a lady in a supermarket recognize me and everything because her son was on the spectrum. That made me happy. Tell us about the autism education you’ve done with Tud Sense. Tud Sense wasn’t really much of an educational show, more or less just an “answer my question” type show. I got commended on another website that hosts my videos for starting that series because the site’s owner had a daughter on the spectrum and was glad to see me come out and say that “Yes, I’m on the spectrum.” That said, there hasn’t been much interest in it over the years so I don’t have any intention of bringing it back anytime soon. Considering your autistic neurology, what do you feel are your biggest strengths and challenges? My biggest strength (I would say) or one of them is to be able to absorb as much knowledge about a particular subject as I can. Especially one I’m passionate about. My biggest weakness though is that I probably don’t read people as well as I should all the time. What advice would you give to an autistic youth or young adult interested in acting, screenwriting or video production? My advice to them would be the same advice I have to anyone doing that. Go for it but always have a backup plan in case it doesn’t work out. Are you currently available for freelance projects, and if so, what kind of work are you experienced in and interested in doing? Currently, I’d have to say I’m not interested in doing freelance work. Jodi and Bluebee TeeVee came in at the tail-end of that and unless there are any more Bluebee TeeVee episodes in the future, I don’t know how interested I’d be. I’m getting married this year and I might have to consider looking for more steady work in the future.

Where can readers connect with you and watch Bluebee TeeVee and Tud Sense? Autism Empowerment has a webpage for Bluebee TeeVee Autism Information Station with episode descriptions and supplemental handouts: https://bit.ly/bluebeeteeveeais You can watch each Bluebee TeeVee episode here at YouTube: https://www.youtube.com/c/bluebeeteevee However, if you want to see my other work such as my book to film review series “From Pages To Pictures,” you can check out my regular YouTube channel here: https://www.youtube.com/c/Jaimetud What else is important for Spectrum Life Magazine readers to know? What I would like for you guys to know is that whatever struggles you guys are going through right now, you can make it through. You can have the perseverance. You gotta have faith in yourself and God and you’ll go places, and do amazing things. Love and peace!

Karen Krejcha is a co-founder of Autism Empowerment, where she serves as Executive Director. She is Editor of Spectrum Life Magazine and host of the Autism Empowerment Podcast. Karen was diagnosed on the autism spectrum in her 40s, after the diagnosis of her two children. She has been married to John Krejcha for over 29 years and is devoted to being a loving wife, mom, daughter and ambassador of acceptance and empowerment worldwide.

www.spectrumlife.org

31


EDUCATION

Exams!

Exams!

Exams!

But... What about Accommodations? By Diane Wiscarson and Carly Cannon Requesting accommodations for standardized exams like the ACT and SAT can be frustrating. While a student’s Individualized Education Program (IEP) team can set up accommodations for statewide assessments, college entrance exams have additional hoops to jump through to actually have accommodations available on testing day. As always, advance planning will provide the most success in actually getting necessary accommodations.

In Washington, IEP teams that decide a statewide assessment is not appropriate for a student, must determine an alternative option, in accordance with Bill 1599, Multiple Pathways to Graduation.

Statewide Assessments

Alternatives considered include the passing of a different standardized test (e.g., Advanced Placement Exams), completing a sequence of technical and career training courses, or earning a C+ in an advanced placement (or equivalent) course.

There are many things to consider when determining whether or not statewide assessments are in a student’s best interest. Can the student get the right accommodations? Do they absolutely have to take statewide assessments to graduate from high school? The answer will depend on which state a student lives in.

The state has also maintained an option for students who are heavily impacted by a cognitive disability, called the Washington Access to Instruction and Measurement (WA-AIM). This option uses an alternative assessment and allows for ‘score-cutting’ to make a passing score a number that the student can more reasonably achieve.

Both Washington and Oregon provide accommodations for statewide assessments, as required by federal law. It is important for parents and students to discuss any accommodations they feel are necessary prior to an IEP meeting.

In Oregon, parents can choose to opt their student out of statewide assessments without the student needing to complete any other step or replacement requirement. Parents can do this by filling out the Opt-Out form available on the Oregon Department of Education website. This form must be submitted at least one week before the statewide testing window opens. Parents should expect to receive a notice of that statewide assessment window opening from their student’s school 30 days prior.

Then, once at an IEP meeting, each potential accommodation can be discussed with the IEP team. The IEP team then decides which accommodations are needed and adds them to the IEP. Following up to make sure the accommodations are actually written into the IEP is very important. Washington versus Oregon Washington and Oregon have not implemented accommodations on statewide assessments exactly the same. Washington provides a list of accommodations typically available for students taking statewide assessments. However, if a student requires another accommodation that is not on that list, the student’s IEP team can submit a Non-Standard Accommodation or Designated Support Request form. Oregon’s accommodations process is simpler; the state requires that the statewide assessment accommodations match the supports that the student is receiving in their classroom. Therefore, it is important that a student’s accommodations and services be fully up to date when the IEP team discusses accommodations for statewide assessments. Another way that Oregon and Washington differ is the requirement for statewide assessments and how that requirement impacts graduation requirements. Though neither state requires statewide assessments for students to graduate, Washington requires students to complete an alternative option if they do not partake in statewide assessments in order to receive a diploma. Oregon has no such rule.

Again, whether a student is in Washington or Oregon, parents should work with their student’s IEP team to develop a comprehensive list of accommodations for statewide assessments. Along with being useful for statewide assessments, these will form the basis for college entrance exams as well. College Entrance Exam Planning Students must request accommodations in advance through either College Board or the American College Testing (ACT). College Board is the organization that conducts the PSAT, SAT, and AP exams, whereas the ACT only conducts the Pre-ACT and ACT exams. Here are a few tips on requesting testing accommodations for your student through these two organizations. Where do I start? Both College Board and the ACT suggest students go through their school’s Services for Students with Disabilities (SSD) Coordinator. For most high schools, the Disability Coordinator is the school counselor. Although both organizations suggest students go through their school’s Disability Coordinators, College Board and the ACT take different approaches on how to get students registered for accommodations. Continued on next page

32

www.spectrumlife.org

32


Exams! Exams! Exams!, continued from page 32 College Board’s process takes much longer and requires more initiated steps by students and families. First, you will need to go to the College Board website and find the consent form to allow your student’s school to coordinate with the organization. Once you have filled out that consent form and sent it to the SSD Coordinator at your student’s school, the SSD Coordinator will prompt you to send them updated documentation of your student’s disability and requested accommodations. College Board requires students to request their accommodations nearly two months in advance of taking the exam – so be sure to start working through this process early. The SSD Coordinator will be notified whether your student has been approved for their requested accommodations. Students generally receive notice in the mail. If your student is approved for accommodations, the notice will include an eligibility code, which they should add on to their test registration form. Fortunately, students who have requests that are pending can still register for their exam and receive accommodations for that exam, even if they do not get approved for their accommodations before registering (assuming they have complied with the accommodations request deadline). The ACT uses a simpler process. Students start by registering for their exam, just as any other student would, but mark that they will be requesting accommodations on their registration form. This will prompt the ACT to send an email, with the consent form for your SSD Coordinator and a list of steps to receiving accommodations on test day. Similar to the College Board’s system, your SSD Coordinator will likely request updated documentation of your child’s disability and requested accommodations. Once the SSD Coordinator has completed their form and sent it into the ACT, the ACT will make a decision concerning your request and notify your SSD Coordinator within two weeks. Despite College Board and the ACT both suggesting students go through their SSD Coordinator, families can go through the process independently. There are a series of forms that need to be filled out and the process takes longer, so if you choose to complete the process on your own, you will need to start much earlier and be sure to look thoroughly under both websites for their full list of forms. Note that if you are working with the ACT, your student will still register as they normally would and mark that they are requesting accommodations, but when they receive the email from the ACT, there will be an option to do the steps separately from an SSD Coordinator. What documentation will my student need? College Board and ACT both require current documentation that shows your student’s disability and how it impacts them. Showing a history of your student’s disability and history of accommodations that have assisted your student in accessing their education is important, so allow yourself plenty of time to plan and track down these documents. College Board has some specific requirements for students with Autism Spectrum Disorder (ASD) when requesting accommodations. Students must provide documentation of

a formal diagnosis, which must have been determined by an evaluation conducted by a licensed professional. That licensed professional should be identified somewhere on the documentation, with their credentials listed. Students can provide additional testing that displays their academic challenges, including academic testing completed in the past five years, cognitive testing that the student has completed since 3rd grade, and any medical or psychiatric testing no more than a year old. Though the ACT is less stringent in its documentation requirements, it also requires documentation of a diagnosed disability by a licensed professional. Both the ACT and College Board also allow for a student’s teachers to fill out a survey about the student and their current accommodations. Additionally, both require the list of requested accommodations from the student along with a statement of why that accommodation is needed. A student’s IEP or 504 Plan can serve as a great advocacy tool since IEPs and 504 Plans indicate a history of a student’s need for the requested accommodations and proof that the accommodation is necessary for them to access their education. What can I be doing to prepare right now? Coordinate with your student’s IEP team. First, if your student is eligible for reevaluation soon, be mindful of the fact that your student will need to provide an evaluation of their disability and how it impacts their ability to access their education when they register for a college entrance exam. If your student has been diagnosed with a disability but has not been evaluated for special education yet, start by requesting that they be evaluated for special education services. Second, speak with your student’s IEP team about their current accommodations. Be sure that your student has all of the accommodations they need. Keep in mind, College Board and the ACT do not have to provide all accommodations that are listed on a student’s IEP – only accommodations that they deem to be “reasonable.” Regardless, having a thorough list of accommodations and a Continued on page 34 www.spectrumlife.org

33


Exams! Exams! Exams!, continued from page 33

Finally, gauge whether a teacher on your student’s IEP team would be helpful in filling out the teacher survey that either College Board or the ACT provides. If you think that a teacher survey would help document the need for accommodations, or outline specific accommodations, then this would be a good tool to use. Get the teacher survey either online or from a school counselor and ask a knowledgeable teacher to fill it out. Then, it can be submitted as support for specific accommodation to either College Board or the ACT.

For college entrance, parents and students should decide whether they want to go through a student’s SSD Coordinator or if they want to go through the process of filling out the forms themselves – recognizing the process may take longer if parents choose to do it themselves, so start early!

Photo courtesy of Wendy Wilson

history of your student benefiting from those accommodations will serve them well when making their request.

Conclusion Parents should determine whether statewide assessments are appropriate for their child, and if not, either opt out or pursue an alternative option (depending on the state). Parents and students should work with their IEP teams to develop an IEP reflective of what each student needs to be successful in their exams. Parents and students can then take that IEP and help it guide them through the process of requesting accommodations with their college entrance exams. Parents and students should give themselves lots of time to request accommodations through either College Board or the ACT. Parents should also use opportunities such as evaluation planning meetings and IEP meetings to prepare.

Diane Wiscarson is the founding attorney of Wiscarson Law, the only firm in Oregon with a primary practice area of special education law for families, and has represented thousands of families of special education students in Oregon and Washington. Carly Cannon is a law clerk at Wiscarson Law and a student at the University of Oregon School of Law, where she is focusing on special education law. Find more information at wiscarsonlaw.com.

Fe Be a He ture re d !

Spectrum Life Magazine uniquely showcases your business to youth, adults and families in the autism community. Our nonprofit is now accepting New Ads and Sponsorships.

For business inquiries, email: SpectrumLife@AutismEmpowerment.org or call (360) 852-8369

WWW.SPECTRUMLIFE.ORG 34

www.spectrumlife.org

34


Easy and Meaningful Ways to Support Autism Empowerment Financial Gifts support Autism Empowerment’s programs and structure. This is the best way to make the most impact and helps us build capacity to be able to do more good for more people! If you choose, you can also designate your gift toward a certain program, service or special event. www.autismempowerment.org/donate Honorarium, Memorial Giving & Endowments - Autism Empowerment offers the option for you to make a tax-deductible gift in honor or in memory of a loved one. This is a wonderful and respectful way to honor someone special in your life. We also have the capacity to accept endowments. Please inquire. Start a Facebook Fundraiser for your birthday or another occasion. Ask your friends and family to support Autism Empowerment and Facebook will pay all admin processing fees. Win-win! Easily set up a fundraiser at the link below: www.facebook.com/fund/autismempowerment Employee Matching Gifts - Thousands of employers match charitable donations made to our organization at NO cost to you (other than your donation). Some employers also donate to us when you volunteer for AE. Many encourage this! Please check with your Human Resources Department for details. eBay Giving Works & PayPal Giving Fund - Support Autism Empowerment anytime you shop or sell at eBay. See our listings. Visit: ebay.to/1lCaFKm or givingworks.ebay.com/charity-auctions/charity/autism-empowerment/50668 Humble Bundle - Humble Bundle sells games, books, software, and more at discounted prices where EVERY purchase supports charity! Choose Autism Empowerment at www.humblebundle.com Fred Meyer Rewards Card - Support Autism Empowerment every time you shop at Fred Meyer. This doesn’t cost you anything. All you have to do is sign up and shop. Autism Empowerment’s number is WA330. Amazon Smile - Support Autism Empowerment when shopping on Amazon. This doesn’t cost you anything additional. All you have to do is sign up and shop: www.autismempowerment.org/get-involved/ways-give/shop-support or go directly to: bit.ly/aeamazonsmile (Check out our Amazon wish list too!) Vehicle Donation - It can be a car, truck, motorcycle, RV or boat. You can support Autism Empowerment with your donation of a vehicle (running or not). bit.ly/aevehicledonation or get more information on our website: www.autismempowerment.org/get-involved/ways-give/donate-vehicle Other Ways To Make an IMPACT!

Volunteer! Be a Social Media Ambassador and share our content. Join our fundraising or thank you committee. www.spectrumlife.org/impact

Please visit our website to learn more. We are a 501(c)3 nonprofit organization. #45-2455219 www.autismempowerment.org/get-involved/ways-give Email: Donations@AutismEmpowerment.org or call (360) 852-8369 with questions.

35


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

IN THIS SECTION Autism Imposter Syndrome.......................................................................... 37 Spectrum Life Directory................................................................................ 39 Dissociative Identity Disorder or Autistic Style of Thinking?................40

36

www.spectrumsmagazine.org


HEALTH + WELLNESS

Autism Imposter Syndrome Behind the Mask: That sinking feeling of faking By Dr. Anson Service aka the Neurodivergent Doctor

Many of us who are autistic have had that sinking feeling that we may have been faking autism in some way, misappropriating a diagnosis that we do not deserve or fearing we have been misdiagnosed. Many of us feel we do not deserve the successes we have had. Could this be a case of imposter syndrome? Impostor syndrome is the belief that one’s success is illegitimate and not deserved. Imposter syndrome was first identified by Dr. Pauline Rose Clance who observed that impostor syndrome is universal across all genders, cultures, and people, and is shared amongst the neurotypical and neurodivergent as well. Interestingly, impostor syndrome appears to be more prevalent with disadvantaged persons (Brevata et al., 2020). Imposter syndrome tends to affect academically minded people most. Because autism is considered a disability, this puts autistic individuals at higher risk of disadvantage and therefore, they may be at greater risk of experiencing imposter syndrome. Conversely, it does not appear to be tied to self-esteem, depression, or anxiety.

If you have been diagnosed, or you have done the work to arrive at a solid self-diagnosis, and if the diagnosis made sense at some point, isn’t it okay that it still makes sense now? In addition to being disadvantaged, and many being academically minded, autistic people may be more affected by imposter syndrome because of a long history of feelings of failure which often includes feeling rejected by others. There is also pressure to “produce” (get a job, go to school, make money, be a productive member of society, etc.). That pressure can be intense and lead to meltdowns and burnout. When there are serious challenges that are not being acknowledged, honored, or validated, being able to perform as expected becomes difficult, if not impossible. There is also a fairly narrow idea that the media, many within the scientific and medical community, many organizations, and even those within the autistic community have perpetuated about what autism “looks like”. If an autistic person does not present within that narrow idea, some may feel they have no right to identify with it as a disability.

Imposter syndrome can also be applied to autism itself. I believe many of us who continue to mask (conform to expectations) do so because it has served us throughout our lives in different situations and has been a tool we have used to get things done and survive.

If your “flavor” of autism does not match what you have previously associated with autism then you may be internally doubting yourself. But this poses a problem not only for you but for others as well.

For many, masking works well in certain situations, and even though it can be exhausting and result in long recovery times, it can still become our way of life. For some, it is the only way others know us. This is one reason it is so difficult for people to grasp the idea of someone being autistic whom they have known their entire lives. “But you never acted autistic when you were younger!”

When you doubt your autism, in addition to your own discomfort, others who may also be closer to your presentation or “flavor” of autism will never hear about your experiences and they may never discover their own autism diagnosis. While it is not your responsibility, you may hold some information that may help others, and helping others can be a wonderful experience for both of you.

When you begin to drop the mask and behave more like yourself, others may find it difficult because your masked behaviors may have played a vital role in their life. Your growth and changes may mean they are left with voids in their lives that they do not know how to deal with.

What To Do About It

Many doubt themselves so much that they wonder if their diagnosis by a licensed, experienced professional who specializes in adult Autism Spectrum Disorder (ASD) may have assigned the diagnosis in error. Many even feel like they swayed the result of testing by behaving a certain way in an effort to get a diagnosis.

IN THIS SECTION

If that sounds like you, think about the struggles you have had throughout your life, wondering why certain things keep happening to you, or why you feel the way you do, and how autism may be the answer.

1. Open up about it. Be wise but vulnerable about what you are experiencing while embracing your own autism diagnosis, traits, and features. Knowing you are autistic is a gift, and it is wise to be selective with whom you share that gift with. Not everyone will understand or believe you. 2. Seek out your people. I frequently use the term “neurodivergent nation” to refer to autistic and ADHD and other neurodivergent people. I created this term to better help create a sense of belonging, validation, and support. Seek out people who provide a safe place for you to talk about your experiences. 3. Attend group therapy or social groups to safely talk about these things. There may be some in your area or online. Continued on page 38

37

www.spectrumsmagazine.org

www.spectrumlife.org

37


Autism Imposter Syndrome, continued from page 37

Embrace your autism, honor it, know you are worthy, and part of our neurodivergent nation. 4. Make a list of the things you feel like an imposter about. You can share this list with knowledgeable people with whom you trust and get some feedback from them. 5. Challenge your cognitive distortions. These are exaggerated or irrational thoughts. Worrying that we are faking it, even if it is non-conscious, can be because of cognitive distortions. Search the internet for tips on how to challenge your cognitive distortions. 6. Do not jump to conclusions about faking it. Instead, get comfortable with the idea that you are becoming more aware of your autism traits and features every day and may be more comfortable being yourself with less masking. 7. Watch your self-talk. Sometimes the most harmful and inaccurate messages come from ourselves. Tell yourself that no two autistic people are alike and that it is okay to be careful and to go slow through your process of self-discovery. 8. Sometimes a professional diagnosis of autism can go a long way in overcoming imposter syndrome and can be validating.

diagnosed will not make it go away because autism is not something you can decide to have or not have. So, if you don’t think it is something you have any cognitive control over, if nothing else, just put it aside until you feel like you can come back to it later. Until then, enjoy your life as much as possible. You may never be able to fully get rid of impostor syndrome but it can sure help to understand that you’re not alone. This article contains excerpts from the Autism Imposter Syndrome video presented by Neurodivergent Doctor on YouTube. To see the full video, search Neurodivergent Doctor or visit: https://youtu.be/SudNEjw79O4 Reference: 1. Bravata DM, Watts SA, Keefer AL, Madhusudhan DK, Taylor KT, Clark DM, Nelson RS, Cokley KO, Hagg HK. Prevalence, Predictors, and Treatment of Impostor Syndrome: a Systematic Review. J Gen Intern Med. 2020 Apr;35(4):1252-1275.

9. Make a conscious decision to remind yourself of the things you actually control and do not control. Worrying if you are fabricating autism symptoms or if you were mistakenly 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 puppy named Luna. www.neurodivergentdoctor.com.

38

www.spectrumlife.org www.spectrumsmagazine.org


SPECTRUM LIFE

resource directory

www.spectrumlife.org

Spectrum Life Magazine serves youth, adults, and families in the autism community. We seek to partner with nonprofit organizations, businesses, support groups, educators and professionals from a variety of fields who desire to support our community in a meaningful way. If you are an autism-friendly provider who desires to connect with new clients, we can help you make those connections through online directory listings. We also offer advertising and sponsorship opportunities for Spectrum Life Magazine and the Autism Empowerment Podcast. Please contact John Krejcha at spectrumlife@autismempowerment.org or call (360) 852-8369. Spectrum Life Magazine and Autism Empowerment do not endorse, promote or guarantee the services or outcome of any one provider or type of therapy.

The Spectrum Life Resource Directory is undergoing renovations this renovations this Summer and Fall! Thank you for your patience while we upgrade our design. Autism Empowerment serves youth, adults, and families in autism and neurodivergent communities through a variety of educational programs and resources including Spectrum Life Magazine, Zoom Autism Magazine, and our Autism Empowerment Podcast. We are currently in the process of redesigning our website at www.AutismEmpowerment.org to create an online hub with increased accessibility for you to enjoy our online media library of resources, articles, comics, podcasts, training, videos and more! While you’re waiting, please enjoy all past issues of Spectrum Life Magazine (2013 - present), all past issues of Zoom Autism Magazine (2014 - 2021), and hundreds of blog articles online for free at www.SpectrumLife.org.

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

971.249.2653

1815 NW 169th Place • Beaverton www.BOLDPediatrictherapy.com www.spectrumlife.org

39


HEALTH + WELLNESS

Dissociative Identity Disorder or Autistic Style of Thinking? By Judy Endow, MSW, LCSW Sometimes autistic neurology – specifically our style of thinking and the way our brain handles information – bumps up against what can appear to be psychiatric symptomatology. This has happened to me many times over the years. My style of thinking is visual along with being quite literal and concrete. In general, I understand myself, thoughts, ideas, and concepts by having or creating an object or visual representation of that construct. Here is an example:

“...in my life, I have come to a fuller understanding of the parts of me as represented by actual pastel-colored stones. I have the collection in a

In the field of autism, we say individuals are not very good at generalization. We try very hard to help students perform learned skills in a multitude of environments to support generalization. I wonder if we had a way to discover how our student was taking in, processing, storing and retrieving information if we might then be able to develop a system for them to be able to generalize? Once the system was developed, would generalization be able to happen? Nobody knows as it hasn’t yet happened, but it is an interesting question. In the field of mental health, we tend to see in Dissociative Identity Disorder distinctly different parts of one person, sometimes the parts seemingly unknown to each other. I was actually diagnosed with this back when it was called Multiple Personality Disorder. Today I believe this historical diagnosis more accurately represents my autistic style of visual thinking in a very literal and concrete way along with the way my neurology takes in, processes, stores, and retrieves information. “Thus, this first pile of stones was comprised of several pastel-colored bits representing the inside unconnected parts of me –

small box. Each stone holds for me the information about a segment of

WHO I was

my history. This is why, as a child, information learned in one setting

in different places,

didn’t automatically transfer to another setting for me, as it seemed

much of the know-how of the various WHO’s

to do for others. For example, the “home Judy” might be able to tie shoes

unrelated to each other each WHO of her represented by

and know how to make a sandwich, but the “school Judy” would not be able to access these skills.”

a separate pastel bit of colored stone”

(Endow, 2009b, p.17)

(Paper Words, Endow, 2009b, p. 17)

40

www.spectrumlife.org

Continued on next page

40


Dissociative Identity Disorder, continued from page 40 Illustration of Concrete Thinking Impact Over time, as I grew from a child to a teenager, and then into the various stages of womanhood, I was able to look back over the lifetime of these pastel stones. Each of them has its own bit of ME recorded and encapsulated into an entity of its own. These pastel stones held my history, each era distinct and separate from all the others, with none of the content of the stones overlapping. Illustration of Information Storage Impact No wonder I often felt unconnected to my past, as if I was continually starting my life over! I came to understand that this was a function of the way I processed and stored the happenings of my life – each bit encapsulated in its own entity, never intertwined with any other events. It often felt to me as if I was lost from myself. Illustration of Information Retrieval Impact When the content of these pastel stones became available to me in my thirties, I was finally able to piece together my past into one whole. During my forties, I was able to think of myself as one whole person with a past, a present and a future yet to come. Today I have a good sense of my own personhood, being able to line up the story of each stone chronologically to tell my history, and also to imagine forward into the future. I do this by thinking about what story the next stone will show. I have to be able to visualize a new pastel stone inside me before I can plan something into the future, like an upcoming vacation, for example. Moving Forward I think it is important to start discussing the issue of when characteristics of autism in general and psychiatric symptoms in specific may be a reflection of autistic neurology – part and parcel of how one thinks and how one takes in, processes, stores, and retrieves information. Back then, it was diagnosed as Multiple Personality Disorder, known today as Dissociative Identity Disorder. This diagnosis was not accurate, nor was it helpful.

One reason it becomes crucial in teasing out whether we are looking at autistic neurology or psychiatric symptomatology is because autistic neurology need not be fixed. Instead, we all simply need to understand how it works for specific individuals and then, based on individual self-determination, we can proceed. For example, in my life, I sometimes just need to explain how I store and retrieve information when I need extra time to answer a question. Other times I simply say, “Please give me a minute.” On the other hand, when something is reflective of psychiatric symptomatology, then the supports and treatments available to the general public need to be available to the autistic too. It is not appropriate to attribute psychiatric symptomatology to autism. It is appropriate, however, to treat psychiatric symptomatology of an autistic person through the lens of autism. Selection from Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology, pgs.43-45. Note: The author is a mental health therapist and is also autistic. She intentionally uses identity-first language (rather than person-first language), and invites the reader, if interested, to do further research on the preference of most autistic adults to refer to themselves using identity-first language. If you are a clinician and interested in learning more about therapy with autistic clients, please join Judy along with two of her colleagues in an online course, Mental Health Therapy with the Autistic Client. Visit for more details: https://bit.ly/mentalhealthautisticclient Reference: 1) Endow, J. (2009b). Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

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 newest book, Autistically Thriving can be purchased at www.judyendow.com.

www.spectrumlife.org

41


therapy

Photos courtesy of Dana Woodhouse

THERAPEUTIC OPTIONS AND RESOURCES

IN THIS SECTION Spelling to Communicate (S2C)...................................................................43

42


THERAPY

Spelling to Communicate (S2C) Hopeful trajectories for Nonspeaking Autistics

By John Krejcha

Originally I trained to be an elementary school teacher but I found that while I enjoyed the art of teaching, classrooms were not my strength. I prefer one-to-one teaching. Ethan: My name is Ethan. I am 20 years old. I am a nonspeaking autistic. So far in my life I am unable to get my mouth to speak my thoughts clearly. I use a letterboard to communicate. My academics have suffered due to my apraxia. Getting people to treat me with competency is difficult until they get to see me spell. I enjoy math, history, and exercising. Why did you reach out to Spectrum Life Magazine?

The exact percentage of youth and adults diagnosed on the autism spectrum who are either nonspeaking or have limited communication through speech is unknown. Some studies estimate the number between 25 - 35%. Other studies suggest up to 40% or higher. For each individual impacted, we do know this: when we have the means to communicate, we are empowered to share our needs, wants, feelings and ideas. Presuming competence and finding ways to help nonspeakers impactfully communicate is essential to their well-being. For many autistic nonspeakers, using a letterboard or Spelling to Communicate (S2C) has given them a method of communication that has positively changed their life trajectory. We wanted to learn more so we recently caught up with Dana Woodhouse of Praxis S2C, her son Ethan Nagy who uses S2C, Donna Estrada of Prism Language LLC and Meg Parkinson of Nonspeaking Communication LLC to learn more about S2C and how it is allowing more autistic youth and adults to find hope and expression through spelling. Hi Dana & Ethan! Tell us a little about yourselves. Dana: I am an S2C (Spelling to Communicate) practitioner here in the Portland area who focuses on teaching non, minimal, and unreliable speakers the motor skills needed to be able to communicate using a letterboard. I am also the mom of a nonspeaking autistic young adult who communicates using S2C. Beyond that, I’m the mom of two young adults and married to a music teacher.

Dana: Originally, I reached out to Spectrum Life Magazine to ask if more nonspeaking autistics could be featured. About 40% of autistics are nonspeaking (I don’t use the term nonverbal. It means no language. Of course they have language, how else could they understand what’s being said to them?) but until recently have had very little representation in the autism community. This isn’t intentional; it’s just that there are such a small percentage of nonspeakers that have access to a reliable form of communication and are actually able to take their place at the table. Spectrum Life Magazine has been a mainstay in our area for so long that I knew there would be a willingness to have that conversation. Thank you. This is an essential conversation to have and we want nonspeaking autistics to feel welcomed, accepted and respected. What is S2C? Dana: S2C stands for Spelling to Communicate. It teaches individuals with motor challenges the purposeful motor skills necessary to point to letters to spell as an alternative means of communication. Motor skills progress along an increasingly complex hierarchy from pointing to letters to typing independently on a keyboard. How did you learn about S2C? Dana: We had been working with a speech therapist named Elizabeth Vosseller out of her clinic, Growing Kids Therapy, in Herndon, VA. She evolved what became S2C through her increasing understanding of the role of apraxia, ocular motor, and motor planning in communication. There are Continued on page 44 www.spectrumlife.org

43


Spelling to Communicate (S2C), continued from page 43 other methods of typing and letterboarding out there that are successful but for my son, S2C worked best. He’s a complex motor guy and this was the kind of support he needed to succeed. Ethan, what do you remember about your first experience with S2C? Ethan: On that day, hope re-entered my life. I had lost hope in ever being able to share my thoughts. Dear and beloved Elizabeth (Vosseller) treated me with respect. I am grateful. Dana, how has S2C changed your life? Dana: I got to know my son’s mind. It completely altered the way I view autism, particularly nonspeaking autism. It changed the way I address my son’s motor planning, dysregulation, everything really. It doesn’t fix the challenges my son has or will face. But now I can receive feedback and input directly from the expert on my son: himself. Why did you decide to become a trained practitioner? Dana: I really didn’t see myself as an ideal candidate but then I realized how limiting I was in my self-view. Basically, we needed a practitioner in Oregon. I had recently made the decision to stay home with my son and wanted to do something that made me feel fulfilled. Elizabeth Vosseller asked if I was interested, so I made the decision to take a chance and trust that I had the potential to become the type of practitioner I wanted to be. Tell us about your journey to founding Praxis S2C and what inspired you to serve the nonspeaking community.

rigorous training, and we are mentored by endorsed practitioners who exhibit a high level of skills. I-ASC is a nonprofit organization that advocates for nonspeakers through education and research. They provide peer support for practitioners and support for families. Ethan, we understand advocacy is important to you and also that you’ve applied to the I-ASC nonspeaking leadership council. Ethan: Helping nonspeakers gain communication is my main goal. I decided to join the council for this sole aim. My role is to give feedback on the training materials used by S2C practitioners to make sure they focus on our needs as autistic spellers. I am also required to write blogs. New travels are on my horizon; I will be going to Washington D.C. to advocate for autistics at the U.S. Capitol. Editor’s Note: Please look for our exclusive interview with Ethan Nagy in the Fall 2022 issue of Spectrum Life Magazine. How did you come up with the name Praxis S2C? Dana: Praxis means the practice of a skill. S2C is the methodology I coach. It was meant to bypass the idea that this is a miracle and ground it in the reality of the continual hard work my clients do to acquire the motor skills to use a letterboard fluently. It also serves as a personal reminder that I have to continue to hone my own skills to get better at what I do.

Dana: My journey to founding my business really stemmed from my role as the parent of an autistic person who uses this modality to communicate. At the time, we had a handful of other “spellers” but it wasn’t a cohesive community. My son would repeatedly say that he was lonely for his people. I didn’t see myself as the ideal candidate to take on the training to be a S2C practitioner but then I realized that sometimes you have to take a chance, so I did. My son is my mission statement in all aspects of my business. Every professional decision I make reflects his input because he’s the expert on autism, not me. Beyond that, once I saw the impact this had in my own son’s life and our family, I just couldn’t keep it to myself. The thought of autistics with no reliable mode of communication breaks my heart. They are honestly the true heroes. I’m just a conduit. Ethan, what are your thoughts about your mom’s work and advocacy? Ethan: My mom is a shy person. I know how advocating takes it out of her. She doesn’t like attention. I am so proud of her. We work together to assist our community. What is the I-ASC and how does that support the work you do? Dana: I-ASC stands for the International Association for Spelling as Communication (www.I-ASC.org). They are the organization through which I was trained. It’s a very

44

www.spectrumlife.org

Continued on next page

44


Spelling to Communicate (S2C), continued from page 44

You share space with other practitioners who work in support of nonspeaking autistics. Who are they and how do you collaborate? Dana: I share a space with Donna Estrada (Prism Language LLC) and Meghann Parkinson (Nonspeaking Communication LLC). I first met Donna during her practitioner training. I asked my son if he would work with her during her training (we are required to work with a number of different clients) and he agreed. Meghann comes from the original clinic, Growing Kids Therapy Center. She’s worked with my son and she was my mentor during my training. Meg is all the best things in a practitioner and human. We share a therapy space and resources. It can be isolating to work alone. Some people thrive in that environment but I’m more of a collaborative person and thankfully, so are Donna and Meg. We are able to maintain a bigger space and collaborate on problem-solving and ideas. We share a mutual vision, so it’s been just wonderful. We are growing, adding a practitioner in the training cohort and another practitioner who is building her practice. Let’s bring Meghann and Donna into the conversation. Tell us a bit about your background? Editor’s Note: Meg, Donna and Dana each provided robust answers to the questions below. We did not want to shorten their answers or minimize the importance of what they had to say but we had to make cuts solely due to space. An extended version of this article with much more information about Meg and Donna’s practices and background will be at www.SpectrumLife.org. Meg: My name is Meg Parkinson and I’m a registered S2C Practitioner endorsed by I-ASC. I began my work at Growing Kids Therapy Center and was Elizabeth Vosseller’s first employee where we created a special learning environment for nonspeaking autistics. I was inspired to work with nonspeakers after my very first observation of an S2C session. After hearing countless stories of being underestimated, and presumed not competent, I was ready to dive head first into autism advocacy through my work as an S2C Practitioner. After being failed by the public school system myself, I wanted to teach my students meaningful education, I wanted to feed their brains, and I wanted to have meaningful conversations and relationships with them. Donna: My name is Donna Estrada and I spent over 15 years working as a postpartum doula. In 2007, I served a family with a new baby and two older sons, one of whom was a nonspeaking autistic. Looking back, I had no idea how much I didn’t know about autism, but I enjoyed this family and stayed connected for years.

In the winter of 2019, this same family reached out to me, sharing that they had been introduced to a new modality called S2C and their son was finally able to show them and the world who he really is. My first question to them was, “Why doesn’t everyone know about this; how do we tell the world?” I was connected with Dana. She met with me right away and shared resources and time, allowed me to observe her in sessions, and coordinated some of my first practice lessons with her clients and her own son, Ethan, who I still work with now. I am now a S2C Practitioner, registered with I-ASC and work with nonspeakers, minimal and unreliable speakers in my practice. My business is called Prism Language. How did you all come together? Dana: Donna and I shared an office in another building and we had outgrown it. We wanted a space where there was more room for our clients to move their bodies and feel comfortable. We started talking about what we wanted in a space when Meghann reached out to me to say she was moving to Oregon. There was no way we weren’t getting her for ourselves and that’s when the idea of sharing a bigger space in a co-op fashion emerged. Our specialty is a very collaborative thing anyway. It’s something I’ve always loved about our community. Working together was a very organic process. Meg: The motto Elizabeth had was “giving kids roots and wings.” She had done the same for me. I was ready to spread my wings, so after seven years I flew to the beautiful Pacific Northwest. Dana was one of the first practitioners I trained in S2C and I met her son, Ethan, when they would visit Virginia for a weekend “intensive.” She mentioned to me that the S2C/ Nonspeaking community in Portland was getting bigger every day. Soon I will be spreading my wings again with a move to the Bellingham, WA area. Donna: I was connected with Dana when I was researching S2C in the Portland area. What type of therapy approaches and services do you offer? Dana: I am a S2C Practitioner endorsed by I-ASC. I teach purposeful motor skills to communicate using a letterboard. I work from a beginning level all the way to independent typing on a keyboard. Because of my experience as a parent and practitioner, I view autism as a mind/motor disconnect. I work on regulation during our sessions as well as motor coaching. Continued on page 46 www.spectrumlife.org

45


Spelling to Communicate (S2C), continued from page 45

1

2

3

4

Photos 1, 2 & 4 courtesy of Dana Woodhouse

46 46

www.spectrumlife.org www.spectrumsmagazine.org

Photo 3 credit: Washington Post photo by Jahi Chikwendiu. Fosters Daily Democrat


Spelling to Communicate (S2C), continued from page 46 Both of these skills are necessary to gain independence and fluency in communication but honestly, it spills over into all aspects of the client’s life. Generally, once parents start to see what their child is capable of and start to presume competency, they are able to take the skills I’ve taught them in S2C and use them in other aspects of life. Meg: I’m a registered S2C Practitioner endorsed by the I-ASC. I provide one-on-one sessions with students, I provide coaching for the families, I lead a weekly virtual social group for spellers via Zoom, and I travel out of town for outreaches and intensives. In addition, I am a mentor for I-ASC, training new practitioners in a six-month-long cohort. Donna: For a new client, with no experience in spelling, I offer an assessment lesson, a bit shorter than a regular session with plenty of time for discussion and answering questions. It is simply an introduction, a chance to get to know one another, as I start the process of coaching the speller’s body to poke the letters on a stencil board. As an S2C Practitioner, I presume competence in my spellers which means I believe my clients can and want to learn. I offer academic content in lessons that are age appropriate to the client. The subject matter is varied and interesting, engaging the speller’s brain while I coach the body. What age range and ability levels do you work with? Dana: I work with clients of all ages and abilities. Generally, the starting age is around 5, which is developmentally where literacy begins. There is no cut-off age because I believe in neuroplasticity. I’ve coached clients in their 50s. I presume competence, which means simply that I presume everyone can and wants to learn. My job is to change how I teach to meet the client where they are at now. Because the outsides don’t often match the insides due to regulation and different levels of apraxia, I don’t make assumptions about anyone’s ability. I’ve yet to be disappointed. Meg: I work with a wide variety of students of all ages (my youngest was 5 years old and my oldest was in his 50s) and various abilities - the main demographic being nonspeaking autistics.

Imagine living with someone for decades and finally getting to know them as an individual? I remember those moments as a parent, before you start taking the communication for granted. Then having the epiphany that I was taking the communication with my son for granted. This man has been able to tell his mother about not only his need for new shoes but his great love for them. He wrote a letter to his sister while she sat in the room. It was the first time they had this kind of interaction. Those moments are why I do what I do. Where are you located and how can people contact you? All three of our businesses are located at 5319 SW Westgate Drive, Ste. 154, Portland, Oregon in the Sylvan area off of Highway 26. Praxis S2C / Dana Woodhouse: Website: www.praxiss2c.com Email: praxiss2c@gmail.com Facebook: praxisS2c Nonspeaking Communication LLC / Meg Parkinson: Email: meg4s2c@gmail.com Phone: 571-465-7392 Prism Language LLC / Donna Estrada: Website: www.prismlanguage.org Email: prismlanguagellc@gmail.com Facebook: Prism-Language-S2C How would somebody get started to determine what would be best for them? The short answer is to contact one of us! We love to have that conversation. We would also challenge parents and caretakers to take an open approach when it comes to their loved one. We carry all the things we were told they could never do inside our heads. It’s ok to start thinking in terms of possibilities.

Donna: The majority of my clients identify as autistic, but I also work with clients that have Down syndrome, Cerebral Palsy, or other syndromes that affect their ability to motor plan and speak as their primary source of communication. Would you share a story about a client you have helped with S2C? Dana: I have a client who comes down from Seattle with his parents. He’s 33 and his parents didn’t know what to expect but they were willing to try. They drove him down twice a month and worked with him at home. One session he finally spelled his first open answer to a question in a lesson. Over time, one sentence grew into two and then paragraphs. To see them finally get to hear their son’s thoughts, to know his opinions, to see his humor, was my privilege. So many tears were shed in those first few times; emotions of happiness, gratitude, amazement.

46

www.spectrumlife.org

John Krejcha is co-founder of Autism Empowerment and serves as Programs Director. He serves on the Editorial Advisory Board of Spectrum Life Magazine and is a co-host for the Autism Empowerment Podcast. John is married to co-founder Karen Krejcha and is the father of two amazing children and their feisty cat, Zula. While John is the only one in the family who is not on the autism spectrum, he identifies as a neurodivergent and loving ally.

www.spectrumlife.org

47


As an Independent Apartment Community (IAC), Stephen’s Place offers positive living options for adults with developmental disabilities. fo With forty-one modern apartments, our focus is on community; empowering and enabling each resident to be a productive contributing member of their community.

Call or email us to schedule a tour (360) 984-3600

info@stephensplace.org 501 SE Ellsworth Road, Vancouver, WA 98664

Apartment rent is inclusive of all meals, supportive services, nursing & ADL assistance and programming including: Job Skills Training, Placement & Coaching Life Skills Training Ho Horticultural Therapy Group Fitness Classes & Yoga Arts & Crafts Movie Nights Sporting Events Group Outings to Local Attractions Transportation Services We also offer a Day Program to people who live outside of the Stephen’s Place community, but would like to build peer relationships

Learn more about us @ www.stephensplace.org

and participate in activities.


Turn static files into dynamic content formats.

Create a flipbook
Issuu converts static files into: digital portfolios, online yearbooks, online catalogs, digital photo albums and more. Sign up and create your flipbook.