Open Letter to Jerry Seinfeld, from an Autism Mama
First off, I’m a big fan of “Seinfeld.” I still love the reruns and enjoy great belly laughs watching it with my friends. Secondly, it’s cool to know that you overcame difficulties relating to people to build such a successful and downright funny persona and show. It’s great to see that you didn’t let that hurdle get in the way of your dreams.
But, yesterday during a Brian Williams interview, my ears pricked up when you said this:
“I think, on a very drawn-out scale, I think I’m on the spectrum.”
While it’s one thing to speculate on whether or not you have autism, I had to stop myself from getting upset when you said this:
“But I don’t see it as dysfunctional. I think of it as an alternate mindset.”
Autism is an alternate mindset?
Oh, boy, and here we go. Jerry, please, sit down, we need to have a talk. First of all, you probably do not have autism. Self-diagnosis is a dangerous thing. Your comment here is casual, speculative, and biased. I have a daughter with sensory processing disorder (SPD) and autism (ASD). They are not the same thing but go hand in hand often, though not always. I always say she got the right mom because I have a few sensory issues myself. Pedicures, for the example, are the equivalent of Chinese water torture for me. Nor do I like wearing wet clothes, except a swimsuit, which I can NEVER wait to remove the minute I’m 5 feet from the pool.
Yet I have neither SPD nor ASD. I know this because I have read about both in depth and, while I can relate to Zoe a little, I have zip zero nada experience with what signals her brain is actually sending her and the unique way she translates them.
Now, some adults are being diagnosed with ASD – and that’s fine, and maybe it’s possible you have it. I’d prefer that until you actually get an official diagnosis from a professional, Jerry, you stop speculating. You are not helping anyone and your inexperience in this area is showing.
How autism is diagnosed today
So how is autism officially diagnosed? According to the AAP News website, the current criteria says symptoms MUST begin in early childhood. They must include problems engaging in social or emotional interaction, severe problems maintaining relationships, AND nonverbal communication issues, PLUS 2 additional symptoms. Read the full list at the AAP website.
My daughter falls well within those guidelines, which were updated in the DSM-V (the guidebook for “psychiatric” disorders) in 2013 by the American Psychiatric Association. And, I don’t necessarily agree with all the changes – I think higher functioning kids could/should be included, but I’m still not sure that would mean you, Jerry.
Does Jerry Seinfeld have autism?
In fact, Jerry, let’s go through your symptoms, shall we? Williams, of course, did ask you the question: “Why? What are the markers?” You replied:
“Um, you’re never paying attention to the right things. Basic social engagement is really a struggle. I’m very literal. When people talk to me and they use expressions, sometimes I don’t know what they’re saying.”
So let’s break this down, OK, Jerry?
- You’re never paying attention to the right things. For what it’s worth, I think that’s an “raised here in America” attention span issue. Or that could just be your creative brain. I’ve spent MANY a Sunday sermon writing fiction in my head; in fact, I’m pretty sure the entire Catholic school experiment my parents put me through was just 6 hours a day of me doing just that. What’s the “right thing” anyway? Are you saying you miss the point of things? You ever take that online policeman observation quiz? I fail by question 3 every single time. I don’t pay attention to the right things either, but I manage. Still don’t have ASD.
- Basic social engagement is really a struggle. For you too? Funny, I thought I was just shy! But maybe I have autism? Uh, no. I very rarely meet anyone that basic social engagement isn’t a struggle. It’s why we all get “Seinfeld,” a show where YOU ACTUALLY WROTE those awkward situations that none of us can figure out. It was a hit NOT because America has autism, but because we’ve all been there. Or maybe you were just an introvert – yet another classic creative symptom, and one I share with you too. Still not autism.
- I’m very literal. When people talk to me and they use expressions, sometimes I don’t know what they’re saying. Well, you’ve got me there because I’m the opposite of literal. And I agree, a lot of the Seinfeld humor is hung up on this one too. But literal thinking does not equal autism. You have to meet those other symptoms too. And yes, the definition changed just last year, but still, even by the old guidelines, I’m willing to bet you DON’T have it.
And since there is suddenly a growing body of work showing an environmental / medical connection to autism, while we’re at it, let’s talk about your medical issues, shall we? Do you sleep? Do you react physically or behaviorally to dairy, gluten, soy, preservatives or dyes? Do you have GI issues (the polite, adult way to ask about poop)? Have you had this all your life? Thyroid issues? Immunity issues? Never ever get sick?
What about how you see the world? Is it hard to communicate without melting down? Struggle with aggression or self-injury when frustrated? Does it feel anything like this:
No? Then possibly you don’t have autism.
Only a doctor can diagnose you
Thing is, I don’t know. I only know what it looks like – externally at least – for my 9-year-old daughter. Autism is not just “I can’t relate to people.” For her, it’s a challenge to talk. Her GI issues have been a battle until this year. Sleep was an accomplishment not mastered until age 5 when we removed dairy – who knew? She has responsive language but can’t control if, when or how she uses it. Eye contact is better than some but still not always there. Skin sensitivity is a constant battle. She still never feels the cold. Everything she eats affects her behavior, good or bad. Dyes and preservatives make her anti-social. Self-injurious behaviors are lighter but return time and again Meltdowns are rare but still an acceptable form of communication to her mind. She’s smart, clever, even crafty, but dang if we can get it down on paper or in a useful form regularly thus far. Stimming* can be a daily activity, sometimes so extreme I think she’ll hurt herself, other times it’s nearly gone. She can type just fine but her handwriting is illegible. Her future is totally unclear to me.
And as a mom struggling to find every way humanly possible to help my daughter grow up and have an independent, productive life, your last statement on the issue really bothers me:
“But I don’t see it as dysfunctional. I think of it as an alternate mindset.”
“I think I have autism” may sound like an episode of “Seinfeld,” but I assure you that to the hundreds of thousands of people parenting kids like mine, it’s no joke. Real autism is not just an “alternate” mindset. It’s not a mindset AT ALL. What my child struggles with is not a choice on her part. It’s not like she can change her “autistic mindset” and just “buck up” and be fine. It’s JUST NOT LIKE THAT, and an iconic celebrity like you, who claims to care so much you donate to all these autism charities, calling this condition a “mindset” is a danger to all families like mine. When people link “autism” to “mindset”, it makes them think my daughter is in control in areas she’s not, and that puts her in danger. It also builds prejudice against people with autism. And finally, it hurts our chances to get proper research, funding and more…if it’s just a “mindset”, then perhaps it’s not worth it.
No laughing matter
According to the CDC, autism affect 1 in 68 kids now. They are a growing population and most kids I know with it are struggling in ways you and I, Jerry, never imagined struggling, ways we cannot even comprehend. There is not enough money to support them all as they grow up. There is not enough in parents’ pockets now to treat them, much less save for their secure future. And every child with autism manifests differently and responds differently to treatments. Some improve nearly 100% with diet, some only 5%. Some therapies work a miracle for this child and the one next to him, they don’t do a thing. Some kids become nearly typical, some just get tiny, microscopic improvements that their parents pray every night will add up to independence one day.
I’m in that latter group, Jerry. You want to help kids with autism? Don’t call it a “mindset” ever again. Don’t hop on the “autism is cool” bandwagon. It’s ok to donate to charities, but please research where that money goes to. I can tell you from experience that much of it does not reach families in need. Instead, reach out to a family you know who is falling apart from bills and therapies and treatments and exhaustion and battles and give them a helping hand. It doesn’t even have to be money, we’d do anything just for a break.
Jerry, we don’t need you to have autism, we need you to be sensitive to the kids and adults who are struggling to survive living a life with autism. Can you do that for us, please? That way I can enjoy those reruns once again…
Signed, An Autism Mama
*Stimming is short for “Self Stimulating Behavior.” It’s generally a repetitive behavior that people with autism (and people without autism) use to manage their emotions. People with autism might do this behavior frequently or most of the time. For Zoe, her stimming behaviors have included running back and forth, repeating a phrase or word over and over, or bouncing her back off the bed repetitively.
Elisa says
Huzzah! Thank you for this well-written piece. I didn’t know whether to laugh or cry at Jerry Seinfeld’s self-diagnosis of autism. Who does this — and on national television no less? Sheesh.
Gina B says
Yea, it seems very attention-seeking/self-serving to me, but I *might* be biased 🙂
Jane says
I agree with you completely. I was wondering if he used to run off screaming with hands over his ears when a noise bothered him, did he bang his head into things when anxious, or how long was he non-verbal? His low attention span could easily be ADD, and being an introvert makes you naturally shy not autistic. My son may have an alternate mindset, but it’s not one that he can just choose to change. If Seinfeld really thinks he has autism then he should see a doctor, but the way he put it just plays down the struggle so many are going through.
Gina B says
Yes, I agree! His take was far too casual, like it’s “no big deal.” It’s irresponsible, frankly.
Mandy Simmss says
I couldnt believe I read that Jerry Seinfeld said he thought he was autistic. My god, really???.
My grand daughter has autism. I would like to know what treatment he recieved for it as my
grand daughter could be cured. Let us know Jerry?.
Gina B says
Hi Mandy, he DID say and then he got a TON of bad press, and said, “Oh no I didn’t say I had it.” Which makes him even WORSE in my eyes. He was just “speculating.” Very frustrating! I have a hard time convincing people about “curing” or “recovering” autism because people are so indoctrinated that it’s simply a different way to think or hardwired. Good luck to your grand daughter.