Michelle Damiata at a NASCAR race.

Why Acceptance Matters for People With Autism

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Autism is not just a disability; autism is something that requires understanding and empathy. Autism is a disability that affects a child’s social skills and learning skills as well. It can also make it difficult to comprehend (understand) words, situations, facial expressions or emotions. Autism can sometimes make it difficult to focus as well. People with autism learn differently than people without autism.

I want to share my story about my life with autism. I was diagnosed with PDD-NOS at 6 years old. PDD-NOS stands for pervasive developmental disorder  — not otherwise specified. I also have a touch of Asperger’s syndrome. I had no eye contact, poor language skills, many meltdowns and poor social skills. I was nonverbal at that time. I was overly sensitive to noises and many other things as well. I didn’t really understand why I had tutors in classes with me.

I still have tutors in classes with me because I learn differently, and I’m fine with that. Without tutors, I would be very confused and I wouldn’t be able to understand what’s going on. I was bullied, picked on, made fun of and lied to. I was pointed at and people stared at me. It made me feel like I would never fit in like everyone else. They tried to push me down, but those who care about me helped me get back up on my feet.

I have met other people with disabilities, and they have shared their stories about their lives with me. And look at me now, I’ve worked extremely hard and I’m very independent. Whenever people try to bring me down, I automatically get back up. When a person points and stares at someone with autism, that’s called being rude and disrespectful, and it’s also judging them. I felt people were judging me because they didn’t understand. When a person with autism is being judged, it can bring bad reminders of their disabilities. For those of you who support people with autism and don’t judge them at all, keep continuing to help make Autism Awareness bigger and bigger. Keep treating them with respect to help them feel “normal.”

For those of you who have autism, you are beautiful fearless warriors. Nothing can stop you from succeeding. You are just as equal as everyone else. For those of you who don’t seem to understand autism, you can try to ask yourself, “How can I help people with autism?”  I ask you to understand people with autism and give them fairness, equality and respect. And I encourage you to stop judging people with autism; instead of judging, learn how to accept them.

Nothing will ever stop me from rising to the top. I believe we the people with autism will rise to the very top of success. At my school I once saw an assembly called “Yes, You Can.” I was touched by how well the speaker talked about his life. He never lets his disability stop him from succeeding. I am never going to give up — that is why I am writing this. I want to help and teach throughout the world. Finally, I would like you to remember, it doesn’t matter if you have autism or any other disabilities, or if you’re not disabled — fairness, equality and most of all acceptance is what matters.

Thank you for reading the words I wrote. I have finished writing my book. I am hoping I will be able to publish it very soon. Please keep a look out for it. God bless you all.

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I Won't Apologize for My Son Having Autism

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Parenting a child with a disability can create a good deal of anxiety in even the most self-assured person. You’re constantly questioning, “Am I doing enough to help him develop? Am I going to be able to get him all the therapy and equipment he needs? If something happens to me, who’s going to be able to take care of him?”

One could feel completely overwhelmed on an almost daily basis.

That said, you do get to a point where you get into a certain rhythm, a point where you’re actually able to develop a routine that helps you and your child make it through the day without too much added stress. Unless, or course, you add in the one thing that adds more stress and anxiety than any other:

Other people.

You can’t keep your child locked away. It isn’t practical and it’s also not good for the child. I stress more about taking my son out into public than just about anything else. It’s got nothing to do with being ashamed or embarrassed of my son. It’s got to do with how people might react to him, and how he might react to them. I’m not someone who believes the world revolves around me or my boy, autism or not. You adapt to the world, not the other way around. I believe I have zero sense of entitlement. Patience from others is always appreciated, but never assumed. The world just doesn’t work like that, and it doesn’t do me or him any good to pretend otherwise.

While I do everything I can to try to keep him calm when we’re out, there are times when things are out of my hands. When those times hit, I will apologize for any disruption he may have caused for others who just happened to be in the wrong place at the wrong time. There are many things I will apologize for.

There’s also plenty for which I will not.

 

I will not apologize for taking him out to public places. He has just as much right as anyone else to experience everything the world has to offer. I won’t apologize for exposing him to new people and places in an effort to teach him how he is supposed to behave when he’s out. I won’t apologize for taking the chance to introduce him to other children his age, so that he might learn what it means to make friends. I won’t apologize for holding onto the hope that this trip to the mall might go better than the last. I won’t apologize for the mere sight of him stimming while keeping to himself making someone uncomfortable. I won’t apologize for him coming out of his shell and actually reaching out to someone. Anyone he does reach out to should consider themselves lucky. I won’t apologize for what I do if someone decides not to accept an apology when something goes wrong, pushing the issue by frightening or mocking my son.

To digress,  I will apologize to whomever is kind enough to post my bail afterwards.

Most of all, I won’t apologize for my son having autism. We all have challenges that we face. He and so many other children and adults like him face challenges far tougher than most can understand. So while I might apologize to the stranger who’s caught off-guard and doesn’t know his situation, I will never apologize for taking the opportunity to show the world how beautiful, loving, funny and wonderful my boy is.

That doesn’t call for an apology. That calls for thanks.

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Thinkstock image by shironosov

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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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