Sometimes, something as simple as a shared meal can mean a great deal.
The Zohn family loves to go out to eat together but found themselves making the effort to do it less because restaurant patrons and staff often didn’t understand their 10-year-old son’s needs. Adin, who has autism, sometimes finds restaurant settings and procedures overwhelming.
His dad, Lenard Zohn decided there had to be a better option for his family to find a more accepting environment to eat together. That’s when he had the idea for Autism Eats.
“We thought there had to be other families going through this too and we could find an environment where we could all do this successfully together,” Zohn told The Mighty.
Zohn now organizes large dinner outings in the Boston area for families in sensory-friendly, non-judgmental environments. Often held in private rooms of restaurants or function facilities, the dinners are always served buffet or family style so there is no waiting, and the music and lighting are adjusted to accommodate sensory sensitivity. Zohn always makes sure pizza is on the menu (it’s Adin’s favorite).
The dinners happen about every three months, and eight have occurred so far. During the first one, Zohn realized just how much of a need there was for something like this in the community — more than 100 people attended.
“We were blown away by the turnout,” Zohn told The Mighty. “Subsequent dinners were averaging 60-80 people, many of them driving from hours away to attend the dinner because they want to be less isolated and want to be able to go out and enjoy something that is considered a ‘normal’ activity.”
Zohn says sometimes the dinners function as a place to share with other families about the challenges they face, but other times none of that is discussed. It’s a safe space people can use in any way they like.
“It’s entirely nonjudgmental,” Zohn told The Mighty. “As a family attending, you don’t have to explain or apologize for any behaviors; we’re all on the same page. It’s an opportunity to share with other families or to put it on the back shelf and just have a nice dinner out.”
Zohn says people in at least 15 other states have contacted him interested in doing their own Autism Eats outings. He has plans in the future to get official non-profit status for the organization and make the dinners more frequent and in more places.
Many in the autism community are taking aim at a hit Broadway play for not including autistic people.
“The Curious Incident of the Dog in the Night-Time,” based on the best-selling novel by Mark Haddon, has been a huge Broadway success. In 2015 the play, currently at the Ethel Barrymore Theatre in New York City, won several Tony Awards including Best Play.
The book the play is adapted from follows the story of 15-year-old Christopher, who is on the autism spectrum (although autism is never specifically mentioned in the book, the back cover states the main character has Asperger’s syndrome). The play uses special effects and graphics to bring the audience into the mind of Christopher. Despite autism being central to the plot, few people involved with the play have autism, including the actor who portrays the teenager.
“Often people with autism who have talent are not given the opportunities they deserve,” he told the Independent. “It’s vital there are more opportunities. I do hope one day learning-disabled performance art will be pushed out of the ghetto and into the mainstream.”
Last September, Alex Sharp, the lead actor in the American play, was replaced by Tyler Lea. Autism advocates say this decision was made without auditioning any autistic people for the role. When The Mighty asked whether this was true, a publicist for “The Curious Incident” refused to comment.
Discussions about the ethics of excluding the perspective central to the play cropped up on Tumblr and in the comment sections of articles like this. A Change.org petition was also started.
A publicist for the play’s production team offered The Mighty the following statement:
There has always been a policy of inclusion in the opportunity to audition for “Curious Incident.” The production encourages professional actors who self-identify as being on the autism spectrum who are interested in playing the role of Christopher to submit their headshot, resume and any relevant information about their actor training or experience to the production’s casting department for consideration to audition. Actors on the autistic spectrum have auditioned and will continue to be seen for the role of Christopher in current and future productions.
Justin Kaiser, an autistic actor and nuerodiversity activist from San Francisco, has written articles about the controversy on theater website Howlround, emailed the play’s creative team and helped spread the word.
“As an autistic actor I know how the deck is stacked against us, especially when it comes to auditions, small talk and the relationship building necessary to receive roles,” Kaiser told The Mighty in an email. “When a play like ‘Curious Incident’ is specifically talking about our autistic minds but ignoring the feedback of the autistic community, it’s incredibly hurtful. That is why I am so passionate about this and putting my time and energy behind it.”
To Carolyn Ledesma, a woman from Portland, Oregon, who’s been campaigning against the play online, it’s an issue more easily illustrated when thought about in terms of race.
“I am a black autistic woman. I have lived both of these things and when it comes to the issue of representation I can tell you, the issue is exactly the same,” Ledesma told The Mighty in an email. “Black face isn’t OK. Yellow face isn’t OK. The fact that people feel ‘crip-face’ should be OK just illustrates the invisibility of the disabled community in the arts and how institutional ablism works to normalize things like this. If the characters are neurodiverse, then let neurodiverse people have some say in the decision about how they are portrayed on stage.”
In June of 2012, Haddon sold the rights for a film version of the book to David Heyman and Steve Kloves, the producer and screenwriter behind the “Harry Potter” films, the Telegraph reported. Autism advocates are waiting to see what kind of involvement the film will have with autistic people.
“That’s really what this is about, at the end of the day,” Ne’eman told the Village Voice. “It’s about the idea that disabled people should not be made incidental to our own stories.”
Not too long ago, I picked my son, Adam, up from his beloved weekly art class. It was a pretty typical pick-up. I found Adam, in his methodical manner, returning his brushes one by one in order of size to the container. He returned his blue apron to the same hook and rearranged the rest of the aprons in rainbow color order.
He then returned to his easel and carefully removed his art board from the clips, first the right side, and then the left side, and returned it to his art case. He finally adjusted his signature black “engineer” hat, then put on his jacket.
I have learned after many years just to be patient and wait. While he was going through his routine, another mom, who was walking out the door with her daughter, stops, takes a step back and says:
“Oh, Adam is your son! His artwork is beautiful. I would have never known that he had autism. I’ll be that you sometimes wish that he didn’t, right?”
Now, being a mom of a child with autism for almost 12 years, I am accustomed to the looks, comments, suggestions and the input of what people have “heard” and what people have “read.” I am used to smiling politely when people make “suggestions” as to what I should try, how I should “approach.” As an autism mom, you learn to develop a thick skin and learn to let a whole lot of things roll off your back. However, I have to say, this particular encounter with this particular mom really stopped me in my tracks. And it really surprised me, for I am typically not ever at a loss for words. But this time, I was. All I could do was look at her, raise my eyebrows a bit and walk out the door; and, in retrospect, I hope my lack of ability to speak at that moment was a bit more powerful than any word that ever could have exited my mouth.
That encounter happened almost two months ago. I immediately came home, opened my blog site and started pounding on the keyboard of my laptop. The fact is, anything and everything I was writing was just turning into a rant. I really didn’t feel that much better. So there my words sat… in my draft file… until now.
I read a blog post on Facebook last night entitled, “I Know What Causes Autism.” I found it a hilarious account of all of the ridiculous explanations of what “causes” autism. It really hit me in the gut, for as much as I am curious as to what may have caused Adam’s autism, in the end, does it really matter? Do I wonder sometimes why Adam is different than my two older, typical children? Of course. Do I sometimes wish my son did not have challenges? Sure, sometimes. Would not having autism mean that I would not have to:
make sure that every restaurant that we go to have chicken tenders and fries on the menu?
run around town, sometimes to four or five grocery stores in frantic search of Blueberry Pomegranate Gatorade, the only “acceptable” vessel to wash down his medicines?
pack up all of his favorite foods when we visit friends homes or go on a vacation?
hurl myself like Superwoman, shielding Adam from even a glimpse of the “evil” strawberry?
worry that he is being treated fairly by his peers?
When you really get down to it, these “inconveniences” are pretty typical, pretty minor and pretty insignificant. Most of you with typical children can probably relate.
But not having autism would mean that I would not:
have a tour guide who knows every stop in every order of every Chicago Metra train line, for I will never get lost
have all of the beautiful artwork that I have decorating the walls of my home
have a “guaranteed” clean bedroom and an organized (by color…a little excessive) closet
know the exact day of a week that a photograph was taken based on the color shirt he was wearing
know the exact date, month and year a significant (and sometimes insignificant; for instance, his sister not turning in homework) event took place
have two incredibly caring, tolerant, patient typical children
have learned to appreciate “baby steps” in order to keep the big picture in perspective
have the closeness we have as a family
have learned the true meaning of patience and acceptance
The list could go on and on…
So,“Mrs. Art Mom,” to answer your (I’m sorry, ignorant — yes, a part of me feels better) question, no, I would not trade my son for the person that he was born to be. Not for a million, trillion years.
Last week, I received a diagnosis of autism spectrum disorder (ASD).
For those who have read my story, you’ll know this is a pretty big change for me. Prior to this, my diagnoses were generalized anxiety, eating disorder not otherwise specified (anorexic type), major depressive disorder and borderline personality disorder (BPD) traits. ASD wasn’t even on my radar until a few months ago, despite the fact that I’ve been through multiple mental health evaluations and in the mental health system for nearly five years.
I have a lot of feelings about getting a new diagnosis. I’ve noticed changes in diagnosis are actually fairly common for people who spend a lot of time in therapy. Few people have nice, easy, clear diagnoses, and it takes many people a few tries to get one that seems right. That process can often be frustrating and confusing. I’ve found it difficult to process.
I do feel some relief. This was the first diagnosis that rang true to me, that I followed up on, that I sought out for myself and that feels as if it might help to explain things that underly all the anxiety and unhappiness that tinges my life. All of my other diagnosis felt like an external framework I tried to fit myself to instead of something that emerged out of my own behavior.
I feel some worry, because I’m not the typical image of autism. I’m very far from the typical image of autism. I worry about my road going forward as a verbal, “high-functioning,” female, activist autistic. I feel confused because I still don’t feel like I can claim the identity of autistic. What if it changes again? What if it’s not quite right? It doesn’t feel like an identity in the way many other autistics have embraced theirs, as something that colors the way they see and interact with the world. Perhaps this is because I haven’t noticed all the ways it affects me yet. Perhaps it’s just that I’m really good at passing as neurotypical. I’m afraid I won’t belong to that community.
I also feel something like regret. You see, I’ve written openly about my past diagnoses in quite a few places. I’ve written about what it’s like to have BPD and how BPD affects me. But now I have the autism diagnosis. I feel a sort of fear/regret/worry I’ve been lying or misleading people about what it’s like to have BPD. I worry what at the time seemed like activism and honesty, telling people the truth of mental illness and giving others with BPD hope, turns out to have been a lie or a mistake all along.
I worry I might have caused damage when I wanted to help.
It’s easy to feel like you’ve been lying when your identity changes. This is true for all kinds of identities, from health to sexuality to a relationship. But a change doesn’t negate what happened in the past, or turn truths into lies. My ASD does not negate my BPD. I still have the BPD traits. Those still count. I didn’t lie to anyone. I was as honest as I could be with the information I had, and my identity is allowed to grow and change.
That is what I want to tell everyone who gets a new or different diagnosis. You are allowed to change, and you are still you. You can be confused about what this means for you, about what the future holds, about how this will change relationships or treatment. But you’ve done nothing wrong in telling people your past diagnosis, or seeking treatment for it, or trying to educate the world. Speaking openly and honestly about your vulnerabilities cannot be wrong.
I also want to offer hope, both to myself and to others who are getting a new diagnosis. I feel so hopeful this might offer me some relief. That I might finally have some explanations for why everything seems so frustrating and overwhelming and impossible. That there might finally be some ways to stop the things that trigger excess anxiety before they happen. For me, the autism diagnosis offers a new window into why my anxiety is out of control and gives me new roads forward. For others, new diagnoses offer new kinds of therapy or medication. New information is good.
I also want to validate to others that frustration is an important and serious emotion in these circumstances. I’ve seen nearly a dozen therapists over the course of the last ten years. Some of them I’ve worked with for long periods, others briefly, but no one has ever said the word autism to me as a potential explanation for some of my behaviors and stresses. This diagnosis, which is probably the one that gives the most information to me about how to approach myself and the world, is the only one that I’ve ever had to learn about, research, discuss and obtain for myself. The process of getting the correct diagnosis is a difficult one, and sometimes mental health professionals are not entirely helpful. Especially with diagnoses like autism and borderline, which have long histories of stigma and gender imbalances, it’s easy to get angry at psychology as a whole. It’s easy to feel like you’ve been left alone to fight for services and recognition.
The whole process once again reminds me of why I talk so openly about my mental health, because identifying and understanding these diagnoses is complicated and confusing, and it requires self-advocacy. The reason I was capable of doing this was because I have researched and learned advocacy for the past three years on this topic. Not everyone is so lucky.
So I want to offer this hope: the right diagnosis is out there. The right therapists and doctors are out there. It takes hard work and a lot of speaking up for yourself to find them. But it is possible to find the label that feels right to you. And that feels like a lot of relief.
Some of the biggest fears I’ve ever had in my life are the fear of the unexpected, fear of change and the fear that I would be looked at differently. This all came into focus my
first year of college at Seton Hall University. Before college, I had only told a few people I was on the spectrum. Since I didn’t really know what that meant or how it affected me, I didn’t feel the need to tell people.
I attended the private schools Community Lower School and Community High School in Teaneck, New Jersey for most of my academic career. Both are for students with learning disabilities, so I never felt the need to tell anyone I had autism. There was a certain comfort that I enjoyed knowing I was with others I could relate to. We all had something with some letters, so it wasn’t a big deal.
When college came along, I didn’t know what to expect. When I was deciding on what college to go to, I chose the college that best matched my future career goals (sports management), not the school that would be best fit my disability (a school with more accommodations). Although they meant well, my high school academic advisors weren’t exactly on board with my dream and feared I wouldn’t be able to survive a post-secondary program. My advisors saw it as a huge mistake that could hurt me in the long run, looking back; I honestly didn’t care.
This brings me to the day I came out about my disability publicly during one of my freshman classes in “Oral Communication.” My professor told me to pick a topic I knew well to speak about for 10 to 15 minutes.
The obvious choice in my mind was to pick autism, considering my public speaking skills were still limited and I thought it would be an easy subject to talk about. The theme of the presentation was going to be “how autism impacts playing basketball while highlighting the story of Jason McElwain’s historic game, which illustrates how someone with autism can overcome the odds.”
For those who don’t know, Jason McElwain was the high school basketball team manager turned basketball star on the spectrum. He didn’t play one game in high school, until the last game of his senior year when he scored six three-pointers in a matter of minutes. This game became one of the biggest underdog stories in recent memory. So now I was set; I would speak about Jason McElwain for five minutes, present a general overview of autism for another five minutes and then close by telling the class I had autism.
The day of the presentation came and everything went according to plan. I had spoken about all of my main points; however, when it came down to telling my fellow peers I had autism in my closing statement, I froze. The thoughts running through my head were endless. What happens if they treat me differently? What happens if no one wants to have anything to do with someone who is different?
I took a moment to compose myself — it really felt like an hour — and when I found my voice again, I realized my fear of letting the world know my true self could get the better of me if I didn’t do something about it right then. Being me had taken me to a post-secondary education, and being me was the only way I was going to get through this presentation.
The closing statement of my presentation was: “Autism cannot define who you are, only you can define autism. I have autism so I know especially, and I ended up the captain of my high school basketball team so I can relate to this message.” As soon as this was said, I was applauded and given a standing ovation by both my professor and my peers. This was a wonderful feeling.
After the speech, I was open to all my peers about being on the spectrum and have been to this day. Many people, both with and without autism, ask me if telling people I am on the spectrum was a mistake. Truth be told, it has only made me stronger.
People are still unaware, sometimes ignorant and sometimes afraid of what might be different. During my time at Seton Hall, I founded an organization to spread disability awareness called Student Disability Awareness (SDA) and founded a non-profit called KFM Making a Difference, which helps give scholarships to students with autism to attend college. Both of these organizations have meant a lot to me as I continue to promote disability activism throughout the country.
Since the days of that Oral Communication class, I’ve spoken at over 500 events and have even received my professional accreditation as a public speaker through the National Speakers Association. I continue to mentor and help those with and without disabilities (mainly through my Facebook page), and it’s something I hope to do for many years to come.
I have a tendency to repeat myself. Actually, I have a tendency to repeat myself a lot, but I’ve already said that — see, I’m doing it again, so let me move on. I’ve been told this several times, sometimes by the same people, which is kind of ironic if you think about it, but nevertheless, it is true — and it benefits you more than you realize.
I don’t know that I always intend to repeat myself, but I do. In the fall of 2014, I found out why. I am autistic, and apparently repeating my words is something that can be common for verbal people on the autism spectrum.
There is a term for it when it is seen in autistic children who are developing speech. It’s called echolalia.
Repeats words or phrases over and over (echolalia)
Reverses pronouns (e.g., says “you” instead of “I”)
Gives unrelated answers to questions
Talks in a flat, robot-like or sing-song voice
Does not understand jokes, sarcasm or teasing
I’m nearly 38 years old, so I didn’t discover I was autistic until I was adult, but autistic children do grow up to be autistic adults. Most of the list of communication issues related to ASD is still very much a present part of my adult autistic experience. There are a few things I have been able to master, but it should in no way suggest that I am no longer autistic; rather, it communicates the amount of personal work I have invested in improving my communication skills. Even with all the work I do to invest in being a better communicator, there is one thing that continues to be an issue for me, and that is I still tend to repeat myself, especially when I am extremely excited about the subject matter.
Perhaps that’s why for some people it can be a bit annoying that a 37-year-old man seems to repeat himself more than necessary. Honestly, I understand why, and most people who notice it don’t even know that I am autistic. But what does make it interesting is that I communicate for a living. I am a pastor, and every week hundreds of people listen to me talk live, and sometimes thousands listen via podcast. I can only imagine the number of times I repeat myself in the course of a 35- to 45-minute message covering the one thing I am passionate about. I’ve never actually counted, but I’m almost certain that I repeat myself dozens of times each week.
What I want to suggest, however, is that my autism is a much more valuable asset to listeners than perhaps even they understand. My autistic voice actually serves as a powerful tool to educate people about the power of becoming better listeners.
Research suggests that listening is our most used communication skill, coming in at nearly 45 percent of our total communication. Most people spend 70 to 80 percent of their day communicating in some form, whether written, verbal or nonverbal, and listening covers nearly half of all communication. The problem is that, according to research, most people are poor listeners. Listening is the communication skill we might use the most, but it is a skill we might have little training in.
I couldn’t agree more. I have spent decades and plenty of dollars learning how to become a better communicator. It has been said that many autistic people tend to think in terms of pictures, and being highly visual shapes their view of the world and subsequently their communication skills. I am sort of in the minority in the sense that I am much more of a verbal thinker. My world is ordered by words. In my autistic world, words create reality, and the way I process the world is analogous to the science fiction trilogy “The Matrix.” Words are codes that create programs that create reality. I spend hours studying the dictionary and the thesaurus so I can learn how to use words more efficiently, because I want to be an effective communicator, and because it is how I see.
Unfortunately, my communication is not the problem. My repeating things over and over may very well be annoying to some, but the reality is that it is actually more effective, given that most people literally have not learned how to listen.
As someone who communicates for a living, I understand the value of communication training. I have invested a lot of time and money into becoming an effective communicator, but the attribute that makes me the most effective is my autism. Studies show that after hearing someone talk, the average listener retains only 50 percent of what was said. So if I repeat a critical point in talk, presentation or sermon just three or four times, that increases your ability to retain the information, because let’s face it: we are all pretty poor listeners, and we need all the help we can get if we really want to “get it.”
What’s most important about my role as a pastor and leader in our community, and what is equally if not more important as my role as an autism advocate, is to help those who want to listen to “get it.”
Do I repeat myself? Yes. Do I do it often. Absolutely. Am I always aware of it? Not always, but just remember that when it happens, it is most likely because I am autistic, and I will tend to repeat myself no matter how much I try to work on my communication skills. What you need to also remember is that you might not be all that great of a listener anyway, so maybe my constantly repeating myself is actually to your benefit. Maybe my repetitive word patterns are much more a blessing to your listening ears than you think. Maybe what feels annoying to you is actually awesome for you, because 10 minutes after we talk, you won’t remember a thing I said if I didn’t repeat myself several times. Maybe the reason you remember anything significant at all about what I’ve shared is because I can’t help the fact that I repeat myself.
I believe we live in a world where everyone wants to be heard, but not that many people actually want to listen. Even for those who are serious about listening to the narratives of others, chances are they are going to struggle to understand, because let’s be honest, no one has taught us how to really listen. While that is not necessarily their fault, neither is my need to repeat myself.
So in a world where we just don’t listen to each other the way that we should, what if my autism is actually a gift to your ears as well as mine, so that we can both learn to hear each other more clearly more consistently, and most importantly more compassionately? If you ask me, that’s something the world could use a little more of.
So I think I’ll just continue repeating myself until we all “get it.”
The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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.