Jamie Lewis and Denine Davies’ son Mason was diagnosed with autism a few months ago, and they were struggling to find a barber who could help their boy sit down and feel comfortable during a haircut. Because of sensory overload, haircuts are often difficult and even painful for people with autism. Hairdresser James Williams tried a number of times to give Mason a cut, but he hadn’t yet succeeded.
Instead of forcing Mason to do something uncomfortable, one day Williams dropped to the floor with him. And after a successful cut, when Williams asked for a high five, Mason took things to the next level and offered a hug.
Autistic people like me are known for their “obsessions.” Be it washing machines, vacuum cleaners or dinosaurs (hell yeah, dinosaurs!!), having obsessions is seen as an autistic trait.
And therefore, it’s something unhealthy. Or at the very least deficient.
Now, people who hold those kind of obsessions usually struggle to articulate why they’re so appealing, or at least in ways the other person can understand or relate to. So allow me.
What’s the difference between an interest and an obsession?
Well, to be cynical: Normal people have “interests.” Autistic people have “obsessions.”
Sometimes they are one and the same — it’s other people’s perceptions that differ. Mainly because the way we express our love for things is less “normal” than the way others do.
For example, when I was about 7, my main interest was dinosaurs. But whereas most young children would express their love of dinosaurs by pretend-roaring and stomping around the playground, I expressed my love by telling people I wanted to be a paleontologist (and telling them how to spell it), memorizing geological eras from Precambrian to Pleistocene, learning Latin words so I knew what dinosaur names meant and reaching the stage where I could grab a piece of paper and write down 91 different species by memory. (Yes, this happened when I was in first grade.)
If teachers had known about autism back then, I’m pretty sure this would’ve been an “autistic obsession,” rather than a legitimate interest.
This is pretty much my experience.
During my time in education, I ran 16 different chess tournaments in six different schools, and some of them became… er… slightly competitive. My record was running two clubs in two schools at once, each with 32 competitors. It was intense. And awesome. But mostly intense.
To those who didn’t know about my Asperger’s, my enthusiasm for chess was down to me being a chess geek. Among those who knew about my Asperger’s, there were a small number of adults I encountered who clearly believed it was an “autistic obsession” rather than honest enthusiasm like other people have.
Be careful before discouraging “obsessions.”
When I was 13, I was still a proud fan of Sonic the Hedgehog. Not just the games either — I was still reading Sonic the Comic, despite being “far too old” for it. There were plenty of people who wanted me to “just grow out of bloody Sonic, you’re not a kid anymore.”
But… why should I?
Back at that age I couldn’t properly express how much Sonic the Hedgehog changed my life. Thankfully now I can, so here goes.
Sonic the Hedgehog made me an explorer.
Did you ever play those awesome Mega Drive (Sega Genesis) games? There were often a dozen different ways you could reach the signpost at the end. Not only did this give the gamer plenty of reasons to play again and again, but it influenced my curiosity. I applied this to the forests outside my house until every single tree had been climbed and every cliff face ascended and descended again.
(And then I went to school, where I was told that our generation never went outside because of games consoles.)
Sonic the Hedgehog made me a writer.
If Nigel Kitching ever reads this, he needs to know he’s a hero of mine. Sonic the Comic (Fleetway Comics) taught me that even comic strips could be gripping stories in their own right. English lessons taught me the writing skills, but Sonic the Comic taught me about the heart of writing.
Sonic the Hedgehog taught me never to give up.
In the world of Sonic the Comic, Doctor Robotnik conquered the world in issue #8. Pretty heavy start. Sonic and his friends didn’t liberate the world until issue #100, three and a half years later. During those three and a half years, I watched characters I loved fighting an insurmountable foe, never giving up as long as there were people they needed to defend.
Whilst I was being told to “grow out of Sonic,” I was reading the stories, busily learning moral principles that would stay with me into adulthood — like why it’s important to stand up for what’s right even if the odds are against you.
If there’s one thing I want people to take away from this article, it’s this:
Before you encourage autistic people away from their obsessions, make sure they aren’t actually legitimate interests which are secretly doing them a world of good.
If you believe in parallel universes, there’ll be a universe where I obediently cast Sonic aside. In that universe, I’m not starting an MA in Creative Writing because I never wrote all that fan-fiction that got me off the starting blocks. In that universe, I never learned how to explore everywhere, whether locally or internationally.
In that universe, I’m less willing to stand up for what’s right.
Next time you see an autistic child “obsessing” over dinosaurs and you personally don’t like it, think about the parallel universe in the future where the child doesn’t become a paleontologist.
We have the same love of things as everyone else. We just express it differently. And sometimes we rely on those interests more, especially if being popular in social groups is off the table. Losing an interest because of other people’s perceptions would simply be another reminder of why we’re not good enough.
And besides, dinosaurs are bloody awesome. Let us love them.
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Rutgers University, in New Brunswick, New Jersey, announced Wednesday its plans for the Rutgers Center for Adult Autism Services (RCAAS). To be located in two buildings on the university’s Douglass Campus, the center will offer university jobs to up to 60 adults with autism who are living off campus. A clinical staff and graduate students will be there for support.
Phase two of the project will offer a pilot residential program for 20 adults with autism who will work on campus and live with Rutgers graduate students in an integrated apartment-style residence.
“There is no other program like this at any other university,” Mary Chrow, Associate Dean for Advancement at the Rutgers Graduate School of Applied and Professional Psychology, told The Mighty. “This comprehensive residential facility, with a day program facility where we’re training our undergraduate and graduate students how to work with adults with autism, is the first of it’s kind.”
The program is potentially a solution to the dual problems of lack of services for adults with autism after they age out of the school system and lack of professionals with adequate experience and training to work with them. Rutgers intends to demonstrate how educational institutions can become part of the answer to these problems.
“I think what’s particularly unique is the training,” Chrow told The Mighty. “We think we’re going to train at least 50 undergraduate and graduate students a year, from all disciplines — education, social work, psychology and across multiple disciplines to develop expertise in working with adults with autism.”
Chrow says there is also potential for this model to be used for people with all kinds of developmental disabilities, not just autism. Plans to open the first phase of the center are set for fall of 2018, after a few years of fundraising. The project will be completely privately funded and cost a total of $35 million.
“We’d love to see other universities also take a look at what we’re doing and replicate it or work with us,” Chrow said. “We see potential in university campuses as a way to train and educate the next generation of professionals, but also to provide jobs for adults with autism who are under-served and underemployed in our society.”
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To the woman who posted this on my town’s Facebook page:
“Scary adult looking guy trick or treating with a Michael Myers outfit holding a huge fake knife!! He is by himself. Terrifying!!”
That’s my boy you’re talking about.
While I did respond to your comment on the page with all the dignity and grace I could muster, it hasn’t really left me.My son was trick-or-treating in a costume during regular trick-or-treating hours. (The post appeared before 8 p.m.) He did exactly what other trick-or-treaters did – rang the bell, said, “Trick-or treat” and left.He didn’t do anything bad or wrong. We got him a good costume – a costume, you know, like what you wear on Halloween? Yes, he’s older than the average trick-or-treater.Is he taller than most?Probably.Though at 5’6″, he’s maybe not as tall as your post would have the good folks of our town thinking.
What I didn’t mention on our town’s page is the fact that my son is autistic. While he is chronologically 17, he is far more sweet and innocent than most other 17-year-old boys.He has no friends to trick-or-treat with, as he has a lot of trouble with social situations.Halloween, with the protection of a costume, is a day that’s easier for him to get out and talk to people.So one of us (his parents) takes him around.He enjoys it, and it makes him happy.And isn’t that what it’s all about?
I could go on about thinking before you post on social media.About responsibility as an adult and community member.About how you don’t know him, or me, or our family. About judging from appearances.All of that is all fine and good. But maybe you just posted what others were also thinking.And I feel like I can teach you (and anyone else who might be thinking the same things) something more big-picture.
I saw much on the Internet this year about the Teal Pumpkin Project, which is about providing allergy-safe treats for kids with food allergies.I think it’s a fine idea.There is no pumpkin for my boy, though. So to my friends, neighbors and the woman who found my son scary, next year (because he will trick-or-treat again if he wants to) – if a taller-than-normal trick-or-treater comes to your door alone, don’t be afraid.He’s actually one of the sweetest, kindest, not-a-mean-bone-in-his-body people you could ever hope to meet.You are lucky to have crossed paths with him.
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The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.
This is a short video I made about what it’s like for me to have an older brother with autism. I hope you enjoy it and see how blessed I am to have Mitchel as my brother. I love him to death, and I want everyone to see how awesome our bond is.
You know, people always ask me, “Spencer, what is like to have an autistic brother? Is it hard, frustrating, is it different?” I kind of laugh at the question and I’m just, like, “No,” “Not really” and “I don’t know.” I mean, I guess it’s different in that as an older brother, he doesn’t really give me advice on women or he can’t buy me alcohol. I never got beat up by him all throughout my childhood like most brotherly relationships. But we do have our own unique bond.
And like normal siblings, he still definitely acknowledges that he is the big brother. Whether he says, “Spencer is eaten by the shark” or him saying, “Mitchel is a… girl,” he knows how to provoke a response from me. It’s his way of taunting. He pretends to shoot me all the time in the hallway, and he has a vicious bear hug. Like normal siblings, we can get on each other’s nerves, but we can always sort it out by having a wrestling match. He’s usually calling for Mom and Dad within a minute because he has zero resilience to tickling.
Our relationship is special. Not one person understands him the way I do. Our bond is strong. He is the most important person to me. I will always protect him.
He is a special human being, and I don’t mean because he’s autistic. It’s because he’s one of a kind. He never ceases to amaze me. My mom told me when Mitchel was maybe 8 or 9, my parents were told that my brother should stop his therapy because they believed he was never going to improve his speech or his ability to interact. They said he probably reached his max capacity. He proved them wrong. Last summer, he rode a surfboard all by himself, he sang a song at his high school graduation and he’s even a gold medalist in the Special Olympics. When I ask him what day did we do so and so, he’ll give me the exact date, like, October 7, 1999. It’s incredible.
He can draw, cook, type, sing, surf, dance — he can pretty much do it all — but that’s not the main reason I think he’s special. He has this ability to make everyone around him happy, especially me. He makes me a better person.
He has taught me to find the joy in the little things. He has taught me patience, understanding and perspective. Although I play the big brother role by the way I take care of him, I do look up to him. I learn from him every day.
I think about this all the time — I can’t wait for him to be the best man at my wedding. When I have children, their favorite Uncle Mitchel will always be up for watching Disney movies and playing pirates or princesses with them. I’m so blessed to have him in my life.
Here’s to you, Mitchel — thank you for being my brother and my best friend.
So back to the beginning of this story, my answer to what it’s like to have an autistic brother? It’s incredible.
The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.