Surprise! Spectrum disorders aren't all about the parents.

Read Marie Myuong Ok's Salon article title. It talks about how Seinfeld's not helping as celebrity autism claims distract from reality and research. I will argue that it will attract more money and more research as people begin thinking: "Wow, there's somebody I can relate to. I understand this disorder a bit more."

Here is her subtitle:

Comedian's revelation doesn't build the right awareness—and might make it harder for already overwhelmed parents.

Wait—so it's all about parents and their feelings? I know—you think I'm being simplistic and naive. You think it's more important for children to get help than for adults to fully understand themselves. It's good and OK to talk about attracting mates, being bipolar and much more, but adults who can (sometimes) support themselves should leave well enough alone. (I am purposely over-simplifying.)

Autism spectrum disorders weren't commonly diagnosed until the 1990's. Jerry Seinfeld, for example, was a full fledged adult with a successful TV show (understatement.)

Perhaps hearing and reading about autism helped him understand himself better. Is that wrong or right?

Should people take oaths saying that once they reach a certain age, make a certain amount of money, live a certain lifestyle, they should no longer try to understand the problems they faced, and/or might continue to face albeit on a very different level than Myung Ok-Lee and her child?

Or if they do they should keep the knowledge to themselves because it might somehow hurt awareness for more severely affected people?

How stupid is that above sentence?

Personally I think Seinfeld's statement is one of the best things I have heard in a long time. Oh and Ray Romano's character Hank on Parenthood self-diagnosed because that's what adults do. Then he went for therapy. So it wasn't a pie in the sky diagnosis.

Seven years ago I found out I have nonverbal learning disorder (NLD.) I had lived an incredible life. Then the Oughts happened.

My city was attacked. My mother died suddenly. Everything that had once been easy became hard.

I no longer understood myself. I probably wouldn't have if I didn't have NLD but NLD added shadings and a different dimension.

I would have done a lot for a role model like Jerry Seinfeld. I understand him. I get his humor. It's New York based. He sounds like most people I grew up with and continued to know during my adult life.

I used to think of myself as a charming person with a lot of quirks that people liked. Learning about NLD but not having role models robbed me of that. I'm just beginning to get that part of me back. 

I have a graduate degree in clinical social work and half a PhD. Yes I'm one of those people Myuong Ok-Lee makes light of. I'm extremely high functioning yet NLD has affected my life in many ways.

I was born in 1950—she claims autism disorders rarely existed back then. Wrong. They weren't diagnosed. We didn't have the knowledge we have today. Research expands upon research. Yes autism disorders have probably exploded. But they existed. Autism was first in the DSM in 1980. Many older kids and probably all adults wouldn't have fit the criteria. It exploded in the 1990s because more and more parents, therapists and school administrators became aware of it.

When I found out about NLD I looked for role models and found exactly none. So I began reading. I learned that I was supposed to have been depressed and suicidal. Can you understand how depressing, demeaning and disturbing that was?

All my worst fears about myself seemed to come true. I wasn't worthy. I knew this from the minimal literature on NLD that ignored people like me.

As I said I would have done a lot for a role model like Seinfeld. My family and friends might have understood more easily and more readily. That would have made me so happy. Is that selfish? I'm sorry.

I might not have gone wild spending money to renovate my apartment to sell it. I might not have let a real estate salesperson talk me into spending more than I planned to on a house—during a recession! I did things I normally never would have done because I was in mourning for both my mother and my own life.

In some ways I stopped caring. I couldn't find a therapist who understood NLD. I had to claw my way back to sanity and a good life.

Yes that was extreme. So were the times—the recession. And I (wrongly) felt I was lacking an anchor to keep me grounded.

I'm not excusing myself for anything. I never have. I am saying that us high functioning people on the spectrum (and I'm still not sure my NLD is) or with other invisible neurological disorders that affect too much and affect us for life—or at least affect my generation for life because we didn't have the "advantages," people have today deserve role models.

I liked who I was before the diagnosis. I'm glad I'm getting her back!

We deserve research done so that we can live to our fullest capacity. We deserve therapists who understand.

We are adults who can speak for ourselves. As much as I love my parents and everyone who knows me knows that is a lot—this was my problem not theirs though they would have cut off their legs if it would have helped me. I was still the person who had to live with the disorder. They had to live with finding help, helping and ramifications.

I'm not saying that's not a lot. I would give my parents medals if I could. But I'm the adult who has navigated the world for many decades. When I was in my 20s the last apron string was truly cut and, by mutual consent, my problems became my problems. Yes I was lucky but damn I shouldn't have to say that I'm lucky for being a high functioning person with a disorder.

Maybe, thankfully, our disorders aren't the "horrible ones" Myung-Ok Lee so eloquently describes but for now we have no other language to describe them. So be happy for us when we find solace. We're incredibly happy for you when your child lives up to his potential—whatever that might be. And many of want different names for varying degrees and varying symptoms. It might simplify life immensely. It would at least help us understand more.

About the Author

Pia Savage

Pia Savage is a writer, journalist, and former social worker diagnosed with Non Verbal Learning Disorder.

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