How Neurodiversity Keeps This World Spinning Round

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Many of my earliest memories are of objects, surfaces. Plush fabrics I rubbed threadbare. The faint luster of a good eraser at the crest of smoothness and friction. The lightly textured expanse of a school desk as I ran my nails over it like skates over scuffed ice. In particular I remember a habit I made of stroking the pearlescent, petal-like skin at my own inner elbow.

I have early memories, too, of therapists’ offices, of well-meaning adults with endless questions. I remember one afternoon in particular. The therapist’s face is a gap, an unfinished puzzle. I sift my little-refined vocabulary for the pieces with which to fill it but I don’t know what she wants, what answers will satisfy her expectant openness.
Finally she asks me, “Are there things you don’t like to touch?” and the answer is at my fingertips, literally and figuratively. I tell her about how I don’t like to handle sheets of notebook paper, how I hate it when the tines of a fork scrape something solid. I tell her of my revulsion for scratching certain things with my fingernails, which incidentally are all stubby from habitually picking at one another. She has never heard me string so many words together at once.

No one explained to me then that I had been diagnosed as autistic. I gathered only that the way my senses worked, the way I discerned good input from bad, was “wrong” somehow. No one would describe the textures, sounds, or smells I relished as beautiful. Beautiful things had form and content; they were music, or art, or a face that could be read, a face that was not a gap. This was long before the little plastic spinners we’re all by now familiar with descended on Amazon in a whirring, rotary-winged swarm. There was no such rainbow of products available to me then which might serve and legitimize my need to stim. My commandeering of objects like erasers and stuffed animals to fill that blank space was seen not as resourceful repurposing, but mindless misuse. It was a sign of something not right with me, as sinister as left-handedness once was.

Nevertheless, my hands stayed busy, picking, stroking, twisting. They busied themselves, intuitively. While my mind focused on a problem or a stream of information, fidgeting gave order to my bodily occupation of a loud and chaotic world. After years of concerned intervention by adults and the spurring of other kids hyper-alert to difference in others, though, I did grow much more discreet in my stimming.

As an adult, the rhetoric of neurodiversity – a perspective that frames variations in neurological condition as normal, valid, and even sometimes beneficial – can feel trite, pacifying. I find today’s typical workplace is often no more hospitable to autistic styles of behavior and processing than the classrooms which were the sites of rebuke and distraction throughout my childhood; even finding work as an autistic person is daunting at best. Public spaces tend to be overwhelming and unwelcoming. It’s hard not to internalize the way the world looks at you, or overlooks you. For the most part, I’ve taken in stride that the world is simply not designed for people like me, and that my own experience of it is marginal.

And yet a number of recent trends bear a paradoxical resemblance to strategic adaptations made by, and for the benefit of, autistic people. Fidget toys, of course, are the most visible example. There are the omnipresent spinners with their three-pronged, alien-sigil shapes, in a range of colors and fabrications reminiscent of keychains, lighters, cheap skateboards, kiosk sunglasses. Embedded in their design is, seemingly, a promise to nebulize the stigma of performing public self-care in a whirl of wacky, Spencer’s Gifts-styled frivolity. There’s also the Antsy Labs-designed Fidget Cube and the myriad imitations it spawned. And there are other, more erratic forms to choose from, a menagerie of twisty, rubbery, metallic, magnetic, gliding, sliding doodads.

Autistic adults and children have long used similar toys, along with chewable silicon shapes and moldables like kinetic sand, putty, and slime, for tactile stimming. But the new wave of products is marketed primarily as a remedy for universal complaints like stress and distractibility.

Speaking of slime, unicorn-hued, glue-based concoctions have inundated Instagram and the U.S.’s collective schoolyards in recent months, much as fidget toys have swept Amazon. Homemade slime may be enjoyed tactilely or visually, and many people find comfort in simply watching slime-mixing videos. In this way the slime trend is continuous with a larger trend of satisfying videos: compilations of machines and skilled craftspeople at work, paint being mixed, things perfectly shaped, perfectly aligned, falling perfectly into place, being cleaned perfectly. The autistic fascination with repetitive or “empty” stimuli has long been used to deny autistic people subjectivity and intelligence, yet it is increasingly evident that the need to sift sensory harmony, a kind of cerebral constellation, from the bombardment of modern life is profoundly and universally human.

Everyone, too, needs ways to deflect that bombardment. A story about a Korean beauty store that uses color-coded shopping baskets with which customers can nonverbally indicate whether they need assistance made the viral rounds in December; the concept was cheered as an introvert’s dream. The story reminded me instantly of the color communication badges used for years at autistic conventions and conferences. One of three cards may be displayed in a name tag holder: a green card indicates the wearer is comfortable being approached for conversation; a yellow card means they only want to talk to people they know; and a red card is a conversational “do not disturb” sign.

Another popular story concerned Ichiran, a ramen chain for solo diners which opened a Brooklyn location in October. Guests are seated in partitioned “flavor concentration booths.” Orders are placed by checklist and passed through a window; verbal communication and even eye contact are unnecessary. This setup enables a kind of grown-up parallel play in which guests are at liberty to take in unadulterated flavor, without the mental friction incurred by more socially interactive dining. An autistic adult’s sensory dream.

I don’t intend to suggest that solo dining and toys that spin are autistic inventions or property. Rather, I mean to point out that innovations which allow autistic people to access, participate in, and enjoy spaces most people take for granted enrich everybody’s experience. It burdens no one to include and accommodate diverse neurotypes. Instead, it promotes the cultivation of varied and abundant outlets for aesthetic and sensory pleasure. It illuminates new niches into which business and design can progress. All traits and affinities, after all, exist on a spectrum. When we are treated as interchangeable moving parts, most of us end up underserved. Neurotypical and autistic people alike generally prefer to inhabit a garden, not a machine.

There’s no shade here for neurotypical people who want to use fidget toys. Do it. They’re fun. But the case of fidget toys is in one way troublesome: they illustrate what happens when neurodiversity as a principle is made invisible or low-priority. In the late bloom of their popularity, kids-these-days scorn is one of the more benign takes on spinners – they’re a vape for your fingers. Compounding the usual grown-up contempt for fads, too, is that whiff of something pathological, something neurotic, that clings to them; they’re a public admission of not being chill, of being the sort of sensitive young person who probably asks for trigger warnings. And without acceptance of the underlying conditions that may make fidget toys useful, people who stim in other, less normalized ways will continue to be mocked and ostracized.

When fidget toys aren’t a trend, they’re a disruption, banned and confiscated in classrooms. Centering neurodiversity in conversations concerning the use of fidget spinners by young students ushers in further controversy; their effectiveness is disputed often without consulting any autistic people, or even the less-anecdotal psychiatric literature on stimming. But that controversy sets something in motion. Educators are moved to consider that stimming is a need, an adaptation, not the aberrant behavior it was when I was in school.

Now that fidgeting is for everybody, stimming no longer appears so alien. If fidget spinners are a disruption, perhaps it is a good and necessary kind, one that will help propel institutions away from working to suppress autism and toward accommodating it – but only if planning and policy are informed by neurodiversity.

At the conclusion of its Kickstarter campaign on May 30, the Gravity weighted blanket had raised $4.7 million. Weighted blankets have been used therapeutically by autistic people for decades, providing a deep pressure that allays anxiety and sensory overload. The Kickstarter page mentions this only passingly, and mostly through vague references to “the medical community.” The subject is, after all, tangential: this iteration of the weighted blanket offers not a specialized solution for a market of marginal individuals, but “the solution for a stressed-out society,” a more effective recharge that will help you take on the rigors of your demanding job, your busy personal life.

The page’s steely, reassuring palette and performance-boosting rhetoric swaddle you in normalcy: this is not a crutch, this is not a special accommodation, this is not a challenge to your preconceptions. This is a product for everyone. And it will help you, one moving component of that great undifferentiated everyone, move a little more smoothly.

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Thinkstock photo by Janifest.

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What Helps Me With Social Interactions as Someone on the Autism Spectrum

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I am often considering different ways I could improve myself in order to make life easier. I thought that for a change it could be interesting to think about different ways other people could help me as well. I have to be quite honest and say that there are a number of things people do that I struggle to understand. For the most part, these things are to do with communication and clarity.

Part of this issue does come from me; this is because I typically guess that people are not that interested in talking to me. Unless someone definitively says they are interested in talking to me, I will guess that they are not, and then I do not put too much effort in. Eventually I can figure out if people are interested in talking to me. If I have known them for six months or a year and they have consistently shown some interest, then it becomes clear they are interested in talking to me.

Clarity is most important in the first few weeks of knowing someone. If an individual manages to make things clear that they are interested in talking to me, all is well. If they do not manage to do this, chances are I will end up going back to the default of thinking they are not interested. When thinking back, and after some discussion with others, I am sure there have been times where I have prematurely shown little interest in people. It feels like everyone else understands this behavior and I do not.

This may seem quite ridiculous, but it would be a lot easier if people greeted each other by saying “Hello, I would like to talk to you for a short while,” or “Hello, I am not interested, leave me alone.” That way I would not have to make the decision myself. When meeting new people I have always found it a lot easier when people are more open and talkative. It both provides me with questions, which can get the conversation going, and also someone to listen to.

I have always found it very easy to listen to people, and have found that people tend to notice my listening skills if they speak to me for more than five minutes. This is where things can get frustrating. When provided with the right person to talk to, I find I can do quite well. It also helps if there is a purpose; it can be easier to meet work colleagues for the first time because they are people that you have to get on with, at least in a working environment, and you are usually introduced in a structured way.

When meeting people in a friendly, leisurely way, you are talking for no reason, just discussing various pointless things until you have decided whether or not the person is worth talking to. This is usually where things go wrong for me. I find it difficult to talk for no reason. Without having a purpose to focus on, things seem a lot more difficult.

It may be that in reality, not much can be done about this. Perhaps this is just how I am, and I will have to simply go on relying on good luck. As I have said, I can get on with some people if they behave in the right way. Perhaps the answer to this is simply more understanding. It is very rare for me to tell people openly about the kinds of difficulties I have. I tend to worry about what people may think, and it is simply easier to not have to explain over and over.

In some ways, it might be useful if people were more aware. If people knew how to spot when someone was having difficulty in a social situation, it would surely help that person to get on, because others would try to adjust their behavior automatically in order to make it easier for the person(s) experiencing difficulty. I feel that the growing importance of different events for raising awareness is helping. But there are other things that can be done as well. On a broad level, the diversity of how people operate and communicate could be discussed a lot more. Then a greater understanding among most people can be possible.

It does not have to be that difficult. It does not even require extra efforts for schools and other places of education. It could simply be done within the home. Parents should be encouraged to teach their children about the different ways people can communicate and also the difficulties some people can have with the world. I have been discussing how I find it difficult to understand how other people work sometimes, and this happens the other way around as well. Promoting acceptance is a broad way can lead to more complex conversations later on.

There used to be a time when I had nearly given up on discussing my  communication issues. I have since realized this is not a very effective way to bring about change, and also that it is not just for my benefit, but for the benefit of other people as well. So even if I sometimes feel like I am not worth helping, other people are, and if I can be part of it, that would feel like a considerable achievement.

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Thinkstock image by Antonio Guillem.

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When Someone Asked Me If Adults Could Be Diagnosed With Autism

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I was giving a keynote during World Autism Month in April about what happens to children with autism when they become adults, when during the Q&A someone asked me about whether or not someone could be diagnosed with autism when they reach adulthood.

The question left me shocked.

A lot of questions ran through my head at this moment. Being diagnosed with autism at 4, I considered myself lucky because my parents were able to get me early intervention services to help me succeed. I wondered to myself if any of my development would have been different if I was diagnosed as an adult and had never received certain services.

My response to the woman in the audience was simply this. “Early intervention is key, but no matter what age you are, anyone can be diagnosed with an autism spectrum disorder.” At the time, I wanted to add information to this answer but I couldn’t help but becoming distracted in thinking to myself about how many adults with autism may have fallen through the cracks due to the lack of awareness about adult diagnosis.

Today, I continue to hear more and more stories of adults being diagnosed. A few days after answering that woman’s question, I gave another talk. After the presentation I visited a support group in the conference center for people who were diagnosed with autism in adulthood. Some were diagnosed in their 20’s, others in their 40’s and one individual in their early 50’s. Some highlighted the difficulties finding treatments, while others who were more recently diagnosed discussed the need for things such as navigating reasonable accommodations in the workplace. As they went around in a circle discussing each of their stories, it made me realize more and more why it’s important to understand that autism doesn’t end when you turn 18.

No matter if you feel you may show one sign of autism or 20, one of the most important things you can do is start a conversation about getting a diagnosis. Talking to your health practitioner and asking who may be able to get you diagnosed is imperative. While I was working at Autism Speaks, one of the toolkits I was the happiest to see come to fruition was the Is It Autism and If So, What Next? A Guide for Adults that was designed to help adults who suspect they may have autism, as well as those who were recently diagnosed with ASD.

I’m glad more and more organizations are becoming more understanding of the needs of adults with disabilities, and I only hope we can continue that trend in the future.

A version of this blog originally appeared on Kerrymagro.com.

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Watch the Trailer for 'Atypical,' Netflix's New Comedy Series About Autism

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Netflix’s newest original series about autism, “Atypical,” doesn’t premiere for another month, but you can catch the show’s official trailer on The Mighty. The eight-episode comedic series follows Sam Gardner (Keir Gilchrist), a high school senior on the autism spectrum, and his family as he navigates dating, school and being a teenager. The show also stars Jennifer Jason Leigh and Michael Rapaport as Sam’s parents.

“We’ve seen the search for love from a neurotypical perspective but not from a point of view like Sam’s,” Robia Rashid, the show’s creator and executive producer, told The Mighty. “I liked the idea of telling a familiar story — the search for those things — from a different perspective, from a voice that’s not often heard.”

According to Rashid, a lot of research went into creating the show. During the initial writing stage, Rashid read books, listened to podcasts, read blogs and talked to people on the spectrum. “There’s someone close to me who is on the spectrum, so I had personal experience to draw from,” she added. “Because of that I, felt like if I was going to write this show, I had to do it very thoughtfully and — to the best of my ability — get it right.”

Leading actor Gilchrist is not on the spectrum, but Anthony Jacques, who plays Sam’s friend Christopher, is. The show also worked with the College Internship Program (CIP), a transition program that helps autistic people find jobs and internships, as well as The Miracle Project, which helps those on the spectrum build communication and social skills through theater.

“We did our best as a show to have people in the autism community involved,” Rashid. “We have several crew members who are parents of children with autism spectrum disorder (ASD). We had an autism researcher and expert on staff who read every outline and script and watched every cut to give notes. It’s something we feel very strongly about and are always working on.”

Beyond having a main character on the autism spectrum, “Atypical” is a story about “not being normal,” a theme Rashid said she personally relates to. “Yes, our main character has ASD and that obviously informs his experience. But the things he’s dealing with are things everyone cares about,” she said. “That’s an important distinction to me because I think it’s easy to discount someone’s story if you think you can’t possibly relate to them.”

“Atypical” also tries to capture the experience of parenting a child on the spectrum. Alienation is a common theme of the show, Rashid said, explaining that Sam feels alienated to the point it is almost ingrained in him. It is also something Sam’s family, parents and sister (Brigette Lundy-Paine), feel.

“[Autism] can be very alienating, both as a person with ASD and a family member,” Rashid noted. “On a larger level, these are both groups that have been somewhat ignored in media as well. Further alienated. So I hope viewers find someone relatable in the Gardner family or in the ‘Atypical’ world. Someone to make them feel less alone, less like a ‘weirdo.'”

All episodes of “Atypical” will be available on Netflix starting August 11. 

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Why I Want to Start Talking More About My Autism Diagnosis

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Throughout most of my life since getting a diagnosis, I have kept it to myself. The only exception being in the year or so after it happened when I was around 9, when I told a number of people. By the time I started secondary school, it was something I did not tell anyone. A lot of the time I was not even certain if some of the teachers knew. I never discussed it with any of them. I also have no idea if things would have really been any better or worse if I was more open.

One of the main reasons that I did not tell anyone is because I was certain they would not understand what it was anyway. Throughout school, I always got the impression I could have told them I had any number of conditions and it would have meant the same thing to most people, even the staff. I also did not want it to be obvious I was different. I wanted to try my best to be an “ordinary” person and hope that no one took any notice.

Another fear for me was people seeing me in a certain way after I told them about my diagnosis. Because of the lack of understanding I have already mentioned, I thought that perhaps people may just have some kind of cartoonish, exaggerated impression of what I was like. The trouble with all this is that it was quite clear I was not the most typical of people. I did have a fair few friends throughout my time in secondary school and am still in vague contact with some of them to this day. I was still quiet, though, compared to a lot of the other people there. When I was in a lesson without anyone I knew well there, I would deliberately sit on my own. I was also never really entirely integrated into my own age group. I did get on with a lot of people, but on rarely more than a casual level. I was also lucky in that I never did anything to upset anyone, so even the people I did not talk to seemed to think I was OK.

In some ways, it is hard to see how it would have made much of a difference at that particular time in my life. It is probably quite true that a lot of people around secondary school age would not have understood very well. Although I have not yet discussed whether it would have made a difference with staff or teachers. To this day, I do not know how much they knew about my diagnosis. No member of staff or teacher directly referred to it in my time at secondary school. I am sure, though, that they must have been given some kind of documentation, telling them everything they needed to know. Whether all of them read it is another matter.

 

It is unfair in some ways to give heavy criticism, though, because for the most part my journey through school was fine — nothing more than fine, but still fine. I think it could have been better, but then again I am only one person out of hundreds there, some of whom had a lot more to deal with than me.

Going past secondary school, my diagnosis is still something I rarely talk about. I even think twice when putting it on application forms, but just about manage in the end. When getting on with people more recently in my life, it is still something I tend not to talk about. The reason for this is the same as it always has been. I do not want to confuse people or make them see me in a certain way. Rather than telling a lot of people I know directly, I have started doing a lot more to try and raise awareness in a general sense. This is both through writing articles like this, and also supporting awareness events. I do not think this is something people understand well enough in a general sense for me to feel entirely confident with telling people when meeting them or shortly after. I do think that progress is being made, though. This is something I am quite pleased about.

Eventually I like to think I could easily tell anyone about my diagnosis and they would then know how to treat me. This would in turn make everything a lot easier, because it would explain a lot of the things I do that I cannot help. This includes an occasional lack of eye contact, reluctance to talk depending on the time of day and a difficulty with understanding cryptic behavior and language. I hope that perhaps people will be able to help me with all of those things. This is when a lot of new doors would open and I would finally be able to do all of things others can manage to do. It is going to take a long time, though, but I am glad I have found ways to get this to happen.

I think that one of the key things I need to learn is that I am not “broken,” I am simply running differently to everyone else. I have now got to the point where it is easy for me to help myself, but it would be excellent for others to be able to help as well.

One thing I am going to do more often when meeting people is perhaps try to be more honest. If I find myself getting into a conversation, it may be something I add in. There does seem to be a slight bit more awareness these days anyway. So perhaps all I would have to do is explain a few things that could help and let it go from there. The reason for this is because as much as this condition make me who I am, and I am happy being as I am, I do feel removed. The way to remedy this then is to carry on trying to raise awareness on a general level as well as being more honest. It is something I am going to find quite difficult, but it is something I am prepared to attempt.

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How Hamilton’s Leslie Odom, Jr. Inspired Me as Someone on the Autism Spectrum

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From his first Broadway performance in “Rent” to his Tony award-winning performance in “Hamilton,” not many performers in my opinion have showed more passion in their performances onstage over the years then Leslie Odom, Jr. That’s why the moment I had the opportunity to talk with him as a fellow actor meant the world to me.

Many of you might know Mr. Odom, Jr. from his Nationwide commercials or his TV appearances on shows such as “Smash” and “Law And Order: SVU” on NBC, but for me, his theater roles have always made the most impact.

Growing up on the spectrum, my parents got me enrolled in theater from the age of 4 to help build on my social and communication abilities. I often didn’t understand the perspectives of others, making theater even more of an amazing outlet for me to partake in. Until the age of 19, I performed in over 20 plays before becoming a consultant to bring a realistic portrayal of disability to our entertainment industry.

When I was able to attend a benefit event near my hometown where he was performing, I knew I wanted to attend. The day of the event I was nervous, knowing I would be potentially in the same room as one of my role models. Then I found out after his performances that night he was going to take a few questions.

Without hesitation, after he performed several songs from his new album, a Nat King Cole medley and a few songs from “Hamilton,” I was one of the first people to raise their hands to ask a question.

But before I could ask a question, I had to get something off my chest.

I told Mr. Odom, Jr. in that moment about how much I appreciated the passion he put in his performances. I try to encourage my mentees, many of whom are younger children with disabilities, to use theater as an outlet to help them progress. During these times, I showed them videos of him on YouTube.

Getting the opportunity to share with Mr. Odom, Jr. about how his passion not only inspired me but other kids I work with meant the world to me. Many say that music is a language that connects the world together, but for me, that message has always been true for music and theater. I only hope my mentees will continued to be inspired by these actors so they can achieve great things for years to come.

A version of this blog originally appeared on Kerrymagro.com.

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Photo source: Leslie Odom, Jr.’s Facebook page

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