introduction to colorwheel autism spectrum

Comic Redesigns the Autism Spectrum to Crush Stereotypes

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Rebecca Burgess sees a problem with the way many people perceive the autism spectrum. Her resolution? The comic below. The Tumblr user debuted “Understanding the Spectrum” (below), which gets rid of the linear autism spectrum image (i.e. you’re either “not autistic, “very autistic” or somewhere in between) and replaces it with a round spectrum full of several traits or ways the brain processes information.

“I want people to understand that autistic people don’t all fit a stereotype, and show people the consequences of stereotyping,” Burgess, from the U.K., told The Mighty in an email. “[Stereotyping leads to] underestimating the skills of autistic people or not believing someone [who is on the spectrum].”

The comic, which she released in April for Autism Acceptance Week, has earned her messages from autistic people, parents and teachers, thanking Burgess for helping them explain the spectrum in a more accurate way.

Take a look at “Understanding the Spectrum” below, and let us know how you would describe the spectrum to someone unfamiliar with autism in the comments at the bottom.

explanation of how it's confusing to explain autism

 

graph of how autism used to be described as a linear spectrum

 

linear spectrum for autism doesn't work

phrases being yelled at a person with autism

 

introduction to colorwheel autism spectrum

further explanation of how to think of the autism spectrum

this spectrum explanation would lead to more acceptance

autism spectrum explained as a color wheel

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The Letter a Nonverbal Teen on the Autism Spectrum Wrote to a Police Department

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Recently, Evan and Dara Baylinson gave their son Gordy a choice.

Gordy, a nonverbal teenager on the autism spectrum, could elect to go to either his school’s prom tonight or an “Autism Night Out” hosted by the local Montgomery County Police Department in Maryland.

Gordy, 16, chose the latter and decided to pen a letter to Officer Laurie Reyes, who formed a departmental autism outreach program to train officers on how to interact with people with autism. Gordy’s letter is reprinted below:

Dear Officer Reyes,

My name is Gordy, and I am a teenager with nonspeaking autism. I prefer this term rather than low functioning, because if I am typing you this letter, which I am, I am clearly functioning. I felt very strongly about writing you today, to give a little extra insight on the disconnected links that were supposed to make my brain and body work together in harmony. But, they don’t and that’s okay. You see, life for me and others like me is a daily game, except not fun, of tug-of-war. My brain, which is much like yours, knows what it wants and how to make that clear. My body, which is much like a drunken, almost six-foot toddler, resists.

This letter is not a cry for pity, pity is not what I’m looking for. I love myself just the way I am, drunken toddler body and all. This letter is, however, a cry for attention, recognition and acceptance.

With your attention, I can help you recognize the signs of nonspeaking autism. If you can recognize the signs, then you will be able to recognize our differences which then leads to the understanding of those differences, which brings us to the wonders of acceptance. With these simple ingredients, together we can create a safe, welcoming and happy environment for both autistics and neurotypicals alike.<

The physical signs to look for are flapping hands or some other socially unacceptable movement, words, noises or behavior in general. That’s uncontrollable. With a mind and feelings much like everyone else’s, do you truly believe we like acting that way? I don’t, that’s for sure.

If one becomes aggressive, with biting or hitting for example, obviously protect yourself but there is no reason to use aggression in return. Remember, this aggression, is an uncontrollable reaction, most likely triggered by fear.

Nothing means more to people like us, than respect. I can tell you with almost one hundred percent certainty the situation will go down a lot easier with this knowledge.

I have nothing but respect for you all and everything you do. If it weren’t for you, I would never have had this opportunity to advocate for myself and other autistics. I look forward to meeting you.

Sincerely,<

Gordy

Reyes wrote back to Gordy and his parents, inviting them to participate in an autism education session and meet her and fellow officers.

“I always share with the officers I teach to ‘never underestimate’ a person with autism,” Reyes wrote the family. “I also teach them to not associate [being] non-verbal with a lack of intelligence. I continuously stress those two thoughts to my officers. Gordy will help to reinforce this idea yet again.”

But as the Washington Post reported, for many years Evan and Dara Baylinson weren’t sure their son, who didn’t speak, was capable of self-expression. It wasn’t until Gordy was 14, in February 2015, that one of his therapists started using a communication technique called the Rapid Prompting Method, in which Gordy answered questions by pointing to letters on an alphabet board. Now, Gordy utilizes a QWERTY keyboard paired with an iPad. Using this method, Gordy composed his note to Reyes, typing one letter at a time with his index finger. Within two one-hour sessions, Gordy had produced the letter, with no outside coaching or instruction.

For Evan Baylinson, who was originally skeptical of what he worried would be forced “facilitated communication,” his son’s viral moment has proved a point of pride.

“We are overwhelmed by the attention and support we have received,” Baylinson wrote in a message to The Mighty. “We are glad people have a chance to see inside Gordy’s mind and how articulate he is despite his brain/body disconnect.”

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The 'Ah-Ha' Moment I Had When My Child With Autism Cried Over a Lost Blanket

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Today, like every Monday and Tuesday, I picked my daughter Piper up from school to take her to therapy. I’ve grown to love this routine for many reasons. I love the one-on-one time we share in the car. I love how proud she is when she finishes each session with Kate, her speech therapist. More than anything, I cherish the look of elation on her face when she spots me walking toward her. She hugs me with every ounce of love inside of her, and leaves her friends and teachers with a smile, an emphatic wave, and a heartfelt “Goodbye!” She brings light and pure, innocent happiness whenever she goes.

mom and piper

Today, though, something just felt “off” as soon as I laid eyes on her. Almost immediately, guilt set in. A rainstorm had slowed my drive. I was five minutes behind, and instead of sitting in her normal spot by the front entrance, she was with her teacher, loading her friends into the vehicle that takes them home. Her teacher reported that she’d had another fantastic day, but I could see she was hurting. I assumed by being a few minutes late, I had thrown off her routine and had been the cause of her melancholy spirit. She didn’t say goodbye to anyone. She clung to me and stared over my shoulder at the school.

As I carried her towards the car, she let out a whimper I’d never heard before. I stopped walking and attempted to meet her gaze. “I’m sorry, sweetheart,” I said. “Are you sad because you didn’t get to ride home with your friends?”

Her eyes were still fixed on the school. “No. I don’t want that.”

With a heavy heart, I buckled her into her seat. It was when I fastened the last clip that I saw large tears rolling down her cheeks. My sweet child was crying, silently. She looked completely heartbroken. I tried to hide my own heartbreak and once again asked her what was bothering her. Because she still struggles to consistently carry on conversation, her direct response stopped me in my tracks.

“I want my MiMi, and I can’t get her!” (MiMi is her baby blanket, her security.)

Not fully expecting her to further respond, I asked if she had left MiMi in the car with her friends.

“No, Mommy. In Rachel’s room .”

Relief washed over me. I quickly unbuckled her and reassured her. “Come on, P. We’ll go get her.”

We didn’t even reach the door before her teacher rushed up to us and offered her apology for not packing the blanket in her backpack. Another teacher overheard our conversation and offered an apology of her own. She explained to me that when Piper had tried to tell her she needed to take MiMi home, she had mistakenly thought it was just a blanket for rest time and denied her request.

“She really did try to tell me, over and over. She’s a smart little girl. I’m sorry, Piper.” Her apology was heartfelt.

Piper relaxed and offered up the goodbyes she had withheld just moments earlier. My child’s sweet demeanor returned. I got her situated in the car one last time, and we set off to therapy.

While I waited in the therapist’s office I had my “ah-ha” moment.

To many moms, the above exchange might have been received in a whole different way. Instead of feeling guilt over throwing off my child’s schedule, I might have been annoyed that my own timeline had been interrupted. I say this not to pass judgment; I say it because I’ve been that mom in the same type of situation with my older children. In my head, I might have said to myself, “Are you kidding me? We’re running late to begin with, and now we have to go all the way back into the school for a blanket?”

Not this time, though. This time, as I sat there, the significance about what had unfolded at school that afternoon washed over me. That small exchange left me in complete awe of my little girl and all she has accomplished.

Six months ago, a moment like that would have been a complete disaster because six months ago, my daughter could barely communicate basic needs. She would have felt lost and scared without MiMi and would have had no way to let me know. I wouldn’t have realized MiMi wasn’t in her bag. The further away we got from school, the more terror she would have felt. Undoubtedly, it would have quickly turned into a full-on meltdown.

Not long ago, Piper could barely find the words to tell me she was thirsty. Today, we made a true connection, she was able to show me she was upset, and using the words that were trapped inside of her head for so long, she clearly and concisely communicated to me what the problem was. Even more, she had communicated it to her teacher. I can’t even begin to imagine the relief she must have felt.

It’s amazing how empowering an exchange like the one we had today can be. It’s something truly worth celebrating. She’s had to work incredibly hard, hours on end, just to get to this point, and I’m not ashamed to tell the world how proud I am.

When you have a child with autism, like Piper, these are the exact victories that demand to be celebrated. In failing to do so, we would be failing to recognize the hard work and sheer determination of our children. If we didn’t celebrate these breakthroughs, we would be failing to recognize the therapists who dedicate their lives to helping our children find their voices and in turn, change our lives, as well.

There is no shame in making mountains out of molehills. In doing so, we are showing our gratitude and building the confidence of our children, who will undoubtedly move those mountains someday.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? Check out our Submit a Story page for more about our submission guidelines.

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The Day After Your Child's Autism Diagnosis

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son walking from behind Your child is on the autism spectrum. No matter how you try to prepare, even if you already “know,” going through the diagnosis of your child is hard. What does this mean for my child? How is this going to affect our family? Can we afford what he’s going to need? How do I help him? Am I strong enough?

Twice, I’ve sat on that couch and heard an autism diagnosis and twice I’ve stood right where you are today… wondering what the future holds for my child. My first son was diagnosed in 2003. I was a young mother, scared, exhausted and totally ignorant to this word I had only heard in movies and books. Through tears, I remember asking if he would ever get married, graduate from high school, live a “normal” life. They promised me nothing, patted my back and handed me a packet of information. My husband was silent except for an “it’ll be OK,” but I didn’t believe him.

The next few days can only be described as mourning. I mourned the baseball games I thought he’d never play, the first dates I thought he’d never go on, even the words “I love you” that I might never hear. I was sad and angry and hurting. Self-pity and depression had become my closest companions, but 3-year-olds have a way of reminding you that you aren’t the star of this show!

Although friends tried to comfort me and family tried to help, that little boy was the only one who was able to teach me how to get up and breath again. He needed me. The pity party was over because every day after that was his life! So we worked and we prayed and we played and we lived.

It wasn’t the life that I had “dreamed” of, but it was something more amazing than any generic cereal commercial I was hoping for. Progress was slow, but we celebrated every single milestone. Words weren’t annoying; they were gold. Little things became big things. He was the teacher; I was just along for the ride.

There were still hard days, lots of hard days, but doesn’t every parent have hard days? There were tears, happy and sad… sometimes his and sometimes mine. I started dreaming new dreams… big dreams, and though they were different, they were in no way less. I no longer longed for “normal.” I wanted extraordinary. That was the life he deserved.

Looking back today, I wonder if I should have reacted differently. I wonder if I was a “bad mom” for being sad, for wishing his life could have been “easy,” for wanting “normalcy.” I’m still not sure. I don’t think there is a right or wrong way to accept and digest a diagnosis for your child. We are all just parents who want the best for our kids and are doing the very best we can to give them the life they deserve.

So, Mom and Dad, if it’s the day after diagnosis or the 901st day, I want you to know you’re doing an awesome job. I know it’s scary and confusing. I know it feels like nobody else can possibly understand how this feels. But I promise you aren’t alone. I also promise one day you are going to look up at that baby and realize you are the lucky one because they just make us better than we are. I truly believe our kids were created for more, something bigger than we can imagine, to influence the world around them to see differently, to love deeper and to push us out of our boring and tidy comfort zones.

And if you are wondering how I handled that second diagnosis… not much better. Hey, I never claimed to have this all figured out. But if it makes you feel any better the first kid just got his driver’s permit, so yeah things just got real. Remember that life I was feeling so sorry about? Well now it flashes before my eyes every time I get in the car with him! And I must say… it’s kind of amazing.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? Check out our Submit a Story page for more about our submission guidelines.

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When Special Needs Parents Have Unexpected Needs of Their Own

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Two weeks ago, I kissed my husband, David, goodbye and looked on as two nurses wheeled him back to the operating room for surgery on his spine. Years of being rough on his body through athletics and other adventures had left David with chronic back pain.

In the weeks preceding the surgery, I had watched his quality of life deteriorate as the pain became more persistent and severe. His right leg had become weak; just walking up or down the stairs was causing him to fall. It wasn’t emergency surgery or even altogether unexpected, but everything had unfolded much faster than we had planned.

Angela Ashton Smith’s husband, David, and their daughter, Piper.
Angela’s husband, David, and their daughter, Piper.

As the nurses and David turned the corner towards the unknown, I felt helpless and uneasy. I settled into a seat in the back of the crowded surgical waiting room and gathered my thoughts in an effort to get to the root cause of what was making me feel so overwhelmed.

First, I recognized I was worried about my husband, which was reasonable, given the circumstances. My background as a medical professional in the specialty of pain management afforded me a reasonable amount of knowledge, so while this was major surgery, it wasn’t foreign to me. I knew what to expect physically in terms of his recovery. There had to be something else making me feel so unprepared.

I began to recognize I was carrying a tremendous sense of guilt. This was the first time in months that I’d actually sat down and simply considered David! In the time that had passed since our youngest daughter, Piper, was diagnosed with autism, life had been a steady stream of appointments with specialists, therapy sessions and IEP meetings. I hadn’t failed to consider him out of a lack of empathy. I had just been so busy living life one day to the next that the significance of what he’d been feeling physically had been lost on me. Until his pain became unbearable, I think it had been lost on him, too.

Finally, I realized what was truly terrifying me. It was the uncertainty surrounding the next two months of our lives as parents of a child with special needs. I previously shared a story about how David’s strength made him a catalyst in our family’s journey. Everything we’d accomplished had been the result of teamwork. What would happen, then, with the team captain on the sidelines? I was overcome with fear because I was second-guessing my ability to fill the void during his period of recovery. I was scared I lacked the physical strength to handle Piper’s meltdowns. I was frightened we wouldn’t be able to connect with her emotionally in terms of this transition. How would I reach out and explain to her, in a way she’d understand, why Daddy couldn’t hold her?

Instead of continuing to question my abilities, I resolved to conquer this challenge the way we’ve approached each challenge to date — one day and one situation at a time. We’ve learned through Piper that daily life often doesn’t go as planned. I couldn’t expect this situation to be any different. Ultimately, I gave myself a pep talk, and I felt confident in my resolution that the only way to face uncertainty was to take it in stride.

As I reflect on that day two weeks ago, I see my worries were mostly unfounded. Life hasn’t fallen apart at our feet, and David is recovering well. While I worried Piper would have a hard time adjusting, she’s actually taken to having Daddy here at home after school. He can’t lift her, but he can cuddle, and she’s soaking up every minute of it.

The most valuable lesson I’ve learned is that parents of a child with special needs can sometimes have unexpected needs of their own. We spend so much of our time advocating for our children that we forget they need, more than anything, for us to be at our best. I know this has been difficult for David, physically and emotionally, yet he’s demonstrated, once again, that he has more strength than I may ever truly realize.

We weren’t any more or less prepared for this surgery than we were to be parents of a child with special needs. In that statement lies an important message for all parents alike. You don’t have to be able to predict the future to make it beautiful.

Follow this journey on drivingthestrugglebus.

The Mighty is asking the following: What’s one thing you want to make sure the special needs mom in your life knows? If you are the special needs mom, challenge a loved one to respond to this! If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

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When I Realized I Didn’t Need to Fit In as a Person on the Autism Spectrum

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After I was diagnosed as being on the autism spectrum when I was 15, my entire life began to change. People understood me better. And once I looked into the diagnosis, I understood myself better, too.

The diagnosis came when I was in the middle of high school, and I ended up having to transfer to a school that could better meet my needs. I didn’t graduate with my friends from the old school, which I had grown up with and knew very well. And by the time I entered the new school, I didn’t get much of a chance to form close relationships with the kids there before it was time to graduate.

College didn’t pan out at first. It reminded me of the days I struggled at my old high school. So I waited quite a while before I was ready to return. I just started studying Early Childhood Education in the fall of 2015, but I’m only able to manage one class at a time. It’s a community college, so I’m not living on campus, either. It’s difficult to find people to hang out with, especially when I’m focusing more on my work.

I’ve tried connecting with parents in the autism community. Some are open to hearing from me. I’m so grateful for that. However, I’m not actually a parent. So I’ve found some parents don’t want me to be a part of their groups.

Although I respect the views of others, I find that I can disagree with many others on the autism spectrum. I just seem to have a different opinion. I don’t feel like I fit in well with those groups, either.

For a long time, I have felt like I don’t really fit in anywhere. But then I started to realize that maybe I don’t need to fit in somewhere. Maybe I’m supposed to stand out and go my own way.

I have a job making picture communication icons for a special needs organization. I love it. It’s something I’m capable of, and I know that I’m making a difference. I’m working on my own, but I’m working. I’m also volunteering my time whenever I can. I help out in special needs classrooms, as well as a local sensory friendly program.

I’m not really a part of just one group or organization. I suppose I don’t really need to be. Sure, it’s tough when you choose to go your own way. It’s hard when you don’t feel like you belong. But I suppose that’s what being different is really all about.

The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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