Dear Autism “Community”: Do You HEAR Yourselves?

seinfeldThese are REAL comments on Autism Daddy’s facebook page concerning Jerry Seinfeld’s recent disclosure that he might be on the autism spectrum:

Melissa P: “As the mother of a very high functioning Aspie, I was very offended by Jerry Seinfeld’s self diagnosis. I saw his stand up once and saw beneath the veneer of his comedy an arrogant, elitist prick. His “social awkwardness” comes from his elitist viewpoint atop his magic money empire which prevents him from connecting with an “average” person. It doesn’t make him an Aspie, it makes him an a-hole.”

Karen D: “…gee what I wouldn’t give to have my essentially non-verbal son have a hit tv show for over a decade, make millions, talk casually on Letterman and Leno, do stand up. It’s like night and day, cookies and carrots, hard and easy…yeah they have things in common but they are so far from each other it’s hard to see their commonality. An when you’re struggling it’s hard to empathsize with a very successful, rich, funny star saying he’s got troubles too.”

Jessi F: “I generally take issue with adults who self-diagnose – not saying adult dx doesn’t happen, but go to a professional & then I’ll believe you. Seeing anyone quirky/different as being on the spectrum annoys the everloving shit out of me (my kids are relatively high-functioning, but have OCD, anxiety, and major depression to go with. Fun times.)”

Shannon N: “I’m really conflicted about this, because I think many people can see particular traits that are present in autism in themselves even if neurotypical. Maybe there’s more to it than what he said in the interview. It just seems that lately anyone that finds themselves to be a bit quirky, or not extroverted, is identifying as autistic.”

Just out of curiosity, how many of the people who form an opinion like these above have spent any real amount of time with the folks they are judging? And exactly what data are they using to make these judgments? Also, when they are out in public with their child with autism who might be having a meltdown, or if they are themselves having a meltdown, do they whip out the psych eval that proves such to show passersby? WHO ARE YOU SO ANGRY WITH??? It is not, and never has been, a competition along the spectrum of autism. Yet that’s a complete lie because it actually has always been a competition because no matter who you are as an individual with autism, you are labeled as either “high-functioning”, “low-functioning”, “self-diagnosed”, “non-verbal”, or some other twist of vocabulary to make sure you are put in your place. Why? God only knows. It serves NO PURPOSE whatsoever. In fact, not only does it create inappropriate limitations on some, but it creates inappropriate expectations on others. It creates crippling animosity between the “levels of functioning” on the spectrum, especially between parents and caregivers. And here, in the case of Mr. Seinfeld, it paints a contradictory portrait of what autism for a man “like him” should look like. When convenient, parents and caregivers, and self-advocates will use this common description of autism: “There is no one autism.” However, they quickly rescind that philosophy when met with a high-functioning celebrity with autism – then the adage simply doesn’t apply. Out yourself as gay? Sure. No one claims that without being brave as hell. You’re going to face either abject persecution from family, friends and society, or if you’re extremely blessed you’ll only live with the daily discrimination our society as a whole still dishes out. Got cancer? No one jokes about having cancer so you’re likely telling the truth. No one starts a judgy facebook thread on whether or not you really have cancer and certainly no one gets into public arguments about whether or not your one malignant mole is as scary as full-on liver cancer. It’s CANCER. Everyone freaks out and offers to bring you a meal. BUT AUTISM OR ASPERGERS???? HOLD UP. Everyone suddenly decides to take to the streets and online minefields to debate that shit and ignore that you just opened your soul for the world to see. Statements like: “Everyone is on the spectrum somewhere, we’re all a little quirky. No big deal.” Why should they treat you with compassion and empathy? Why acknowledge that you have come forward displaying what you believe or know for certain is a lifelong condition of your very being? Apparently because you chose this and the autism community simply disagrees. This is AUTISM. It was there from birth. Imagine the host of feelings for an adult to finally find the answers they have been searching a lifetime for! When I discovered my autism, first through self-diagnosis because HELLO, you have to start somewhere – I was relieved and thrilled to have answers!  I’m not 3 or 6 or 17 years old.  I’m an adult and I had to figure it out for myself.  Then I had to decide if I wanted a formal diagnosis.  But let’s be honest here – Mr. Seinfeld is pretty damn smart.  He knows a lot of smart people.  Are we really going to hold him to a clinical diagnosis to “claim” him as one of our own?  Do you question his ability or motive at 60 years old to understand the diagnosis he is seeking?  Do you really think this man went public on the evening news without some serious discussions? John Elder Robison is a dear man, respected member of the autism community and was “casually” diagnosed by a physician friend as an adult. He didn’t seek a formal diagnosis right away – he didn’t have to! Only later did he do so in the course of participating in clinical research. So why do we judge one and not another??? Is it because this is a career comedian who made a ton of money?  Is this the disenfranchised autism “community” displaying its jealousy of “high-functioning”? Of fame and fortune?  Why are we not throwing the entire weight and love and support of the autism community towards Mr. Seinfeld’s brave announcement AND TO EVERY INDIVIDUAL WHO SEEKS COMMUNITY AS AN AUTISTIC? And we still wonder why this “community” of autism cannot pull itself together and get anything done. It’s so important that we set the example for ALL individuals who think they may be on the spectrum that WE WILL WELCOME THEM!!!! My sincerest blessings to Mr. Seinfeld for his bravery on this journey to self-discovery. My prayers to all individuals who struggle to be accepted and supported on their journeys, whether children or adults, whether diagnosed or in the process of discovering their autistic roots. You are amazing and you are loved. And there *is* a community waiting for you that will accept you and love you for everything you are. Never give up. ***Friendly reminder, Folks – Please allow time for your comment to appear unless it qualifies as hurtful, hateful, contains inappropriate language, etc. This is a place of acceptance and safety. While I welcome opposing viewpoints, we all deserve respect. Thank you.***

About Rachel Kenyon

Rachel Kenyon is an Aspie, Advocate and single mom of two beautiful babes - The Boy (11) and RM (8). The Boy is a Legomaniac and RM is a kick-ass diva with Autism and 4q Deletion Syndrome. View all posts by Rachel Kenyon

55 responses to “Dear Autism “Community”: Do You HEAR Yourselves?

  • AJThomason

    AMEN!!!Thank you for writing this!

  • Crossstitch Puzzle

    Another brilliant post. Mr Seinfield if you are autistic or whether you aren’t, you made people think about autism.

  • OneLoCoMommy

    Reblogged this on One LoCo Mommy and commented:
    Love this post regarding Jerry Seinfeld’s recent conversation with Brian Williams.

  • Tina

    Didn’t we all just get all excited over the group of young aspie boys that had toured together as a comedic group and made a documentary. I mean come on people wake up and smell the roses! I was told right after my son’s diagnosis 9 yrs ago that my doctor was sure I had “outgrown” my own undiagnosed aspie traits for the most part and through talk and medical history just managed to let him know enough about my self he was sure enough to declare it. He was trying to do so to give me a light at the end of the dark scary tunnel I had in front of me. You honest to God have no idea what it is like to be anyone other than yourself. Don’t judge others. Just don’t. Thank you for your response to all the drama that has ensued since Seinfeld’s comments. Someone needed to say it. Thank you. Not every outcome or diagnosis has to be scary to be heard. Some can just be.

  • Heather

    This post was well worth the read. As a mom of a nonverbal autistic son-allow me for 1 moment to air my feelings on Jerry Seinfeld’s revelation. can it be? Sure why not? Am I offended? Hell no. The spectrum is so wide & many people can fall into it. I’ve seen the qualifiers. ANYONE can indeed fall into the spectrum. Can it be it went this far without noticing? Sure why the heck not. If he is indeed Autistic, now he has answers to questions he may have had about his own behaviors. Is he jumping on a bandwagon? WHO IN THEIR RIGHT MIND WOULD WANT TO? He is a public figure-many people suffer from autism. All I can say is good luck to him. There is my 2 cents.

    • Rachel Kenyon

      I agree, Heather. It’s not a bandwagon people would seem to want to jump onto, especially since it isn’t exactly called a “Welcome” kind of wagon ;0)

      • Heather

        Unfortunately I think people need a reason to be offended by someone or something. OK he’s a celebrity-he had a hit TV show. When you see the list of celebrities with autism I don’t see those other public figures being judged. I loved this article, and it just goes to show you how closed minded people in our community & outside the community can be. Its sad-but this was an article I’m glad was written. There is too much stigma placed on our community. I’ve been fortunate to have more positive than negative. In fact, I never had a negative experience. Its how you view your situation & handle yourself in the situations. I think people are more amazed at my son (I have 3 children) because although he doesn’t speak, I let people know immediately he’s not ignoring you when you’re speaking & I explain he is a nonverbal autistic child. I leave the door open to questions. There is not enough information out there for “typical” people to understand. Perhaps Jerry Seinfeld should be looked at as a POSITIVE representative who may be able to do promote a more open opinion to the people on the outside. You are right-this is not the more welcoming wagon. Its a shame too. ;)

      • Rachel Kenyon

        I approach my daughter the same, Heather. I have never treated her as anything other than a bright, beautiful child with limitless potential – whatever her future is destined to be is out of my hands. I can limit it with fear, or I can watch her take on the world in her own fashion.

  • jjmeleri

    I think there some serious problems in the autism community ….. they are not a community at all …. got some of the worst looks and comments from fellow autism parents during meltdowns in public … no wonder they cant just accept Seinfeld’s diagnosis (no matter how its made) well done Seinfeld for the guts to come clean … you are a hero in my eyes

  • Rebecca

    Beautiful! Perfectly stated! I personally felt attacked just the other day, having to defend why I thought my son should be tested. One out of several professionals at an ARD meeting just felt he has behavior issues. Fortunately, one lady spoke up and said, several of us believe it is worth looking into. People need to back off and not be so quick to judge everyone else. Don’t be so quick to claim, “I’ve got real problems… you don’t!”. And just because someone has $ or is famous doesn’t make them exempt from real things like autism! There are a lot of older people undiagnosed due to the lack of awareness in the past.

  • Johnny Skiles Jr

    My only problem is if he knew he was going to talk about this on national tv why he even said he was self diagnosed if he hadn’t said that those people’s comments would have been differant. It’s not like anyone would ask or be able to find out.

    • Rachel Kenyon

      I think it’s because he is simply being honest with us. And sadly, that was the birth of this entire frenzy. People fail to listen with compassion, and instead filter what they are hearing or reading with their own fear.
      Thanks for sharing, Johnny.

  • kdelaney531

    well, I am the Karen D that you quoted in your article and I think that I was completely misunderstood and misinterpreted. I am not jealous of Jerry Seinfeld nor am I anti-Jerry or anti-anything. My son is severely impacted by autistism…each day is a struggle both to ensure that he gets all of his rights as a student and a person but also that he doesn’t injure himself or others. He’s a wonderful, loving young man of 17 with a terrible terrible neurological/developmental disorder. What I said in my comment was…gee I wish….and I do wish that my son would grow up to be rich, famous, successful, at ease…any one or all of the above. Then I said something about night and day, carrots and cookies and how although they have so much in common ( as in cookies and carrots are both food, both are pleasureable to eat to those that like them,etc) although they have much in common it is HARD to see the commonality sometimes. I didn’t say there was nothing in common I said that sometimes It’s hard to see it. Just like sometimes it’s HARD to empathize with Jerry Seinfeld saying that he takes things too literal and that’s why he thinks he’s on the spectrum. I didn’t say he wasn’t on the spectrum, I didn’t say he couldn’t be nor did I say he was a liar. I just said sometimes it’s HARD to empathize with someone like them claiming they are strugglling. Why is that bad for me to say that sometimes it is hard to imagine that my son and Jerry Seinfeld have anything in common? You are pointing out that people are being quick to criticize and point fingers yet isn’t that what you did with my post? Aren’t I allowed to have my opinion even if it doesn’t gel with yours?

    • Rachel Kenyon

      It’s sad to me, Karen, because your son can hear you not being able to understand a successful person being autistic like him.

      And that is my opinion, and I respect that yours differs.

    • Kisy

      I think your attitude is awful, to be honest. Three of my children are autistic and all three are affected differently. My sister went to university and got a masters degree…she was diagnosed with aspergers as an adult. If I were to tell you how much she earns, would you say she doesn’t struggle ‘enough’ to deserve empathy from you?? Seriously, how dare you?! Just because your child is nonverbal does NOT mean anyone who isn’t doesn’t have difficulties.

      I’ll tell you something, to the public, your son is nonverbal, so the public’s expectations are far different to my sister’s. To everyone else there is no reason why she acts the way she does. She is judged as being NT, I’ll bet your son isn’t.

      Oh, and by the way, I am willing to bet that I am also on the spectrum and going through diagnosis now (which is VERY difficult as an adult, by the way, since one learns to ‘fake it’ and not be so obviously different to everyone else).

      • Jeannette Solimine (@revjeannette)

        Apparently this is supposed to be an friendly forum is just told “welcome” despite the fact she was just extremely rude and judgmental about Karen’s post. As the mother of a girl who is verbal but can’t really communicate, I think you have a lot of nerve. Actually, I think you have absolutely proven that you are autistic. You have absolutely no understanding about the struggles of others. That others may have more serious struggles that you do. Everyone in life struggles to some degree or other, and a lot of people who don’t have autism struggle with much worse issues. But to compare the struggles of someone who can achieve success in the world with accommodation, to someone who will never be able to be independent shows your callousness not hers. To say that your sister is judged as being NT in public and therefore deserves more sympathy is ludicrous. Some of us can’t even take our children or adult children out in public at all because sensory overload is too much for them, and if we do take them out and they have a meltdown, people look at us as if our children are spoiled brats. Autistic children don’t look different from NT children as a general rule unless there is some other disorder happening. Whether or not Jerry Seinfeld is autistic to some loose degree or not, I don’t know. But until he gets a professional opinion about his being on the spectrum, he should keep his opinions about this medical condition to himself. And please try in future to remember that there are people in this world who actually do have it tougher that you… some of them autistic, some of them not.

      • Rachel Kenyon

        I hesitated to approve your comment, Jeannette, but then I realized that it is a great example of the stigma we, as Autistics, have to fight against because of people like you. >>> “Actually, I think you have absolutely proven that you are autistic. You have absolutely no understanding about the struggles of others.” <<< THIS.
        Your child is listening.

    • Bjprecourt

      Karen D, I completely understand and support what you are saying you are not alone in your thoughts. It is hard for me to see my 17 yo son’s commonality to what Mr. Seinfield struggles with. I have never been a fan of Seinfield and personally find him to be very arrogant. So I am bias in my thinking. If he is afflicted, do some GOOD for the community of Autism, funding, be a spokesperson etc.

      • Christie

        Looks like has has been trying to do something good for the community:
        Seinfeld has performed at a number of benefits for autism charities over the years, including Autism Speaks events and the 2012 “Night of Too Many Stars.”

  • shayleen

    I want to say that the attack on the autism community as a whole isn’t completely justified. Yes there are those in the community who are small minded and judgemental and cannot see past there own problems nor can they accept anyone else’s problems as being real or as bad as their situation . But there are also so many of us that band together and support one another. I can honestly say that without hearing from other autism families or being part of the “autism community” I would be lost. There are always going to be the who disagree with anything. Not everyone in the community has been negative towards Seinfeld. You have to remember that it’s an extremely large community which means not everyone is the same.

  • John Elder Robison

    Thanks for your post, and your support of our community. I’d just like to clarify one point with respect to myself in your story. While I was first diagnosed informally I went on to be diagnosed officially using ADOS and I’ve been reevaluated many times with the same Diagnosis.

    I’ve also participated in experimental bio marker studies where I’ve seen myself grouped with other autistics at all points on the spectrum

    While I did not “need” an official diag as an independent adult I did need one to participate in research and I’ve been honored to do that.

    • Rachel Kenyon

      I appreciate the clarification, John! Thanks for your candor. I should have elaborated to say that your initial introduction to autism, your presence in the community, and your writing have been inspirational enough to be accepted without people requesting a copy of your diagnosis aside from your tremendous contribution to research! Be well, JER!

  • freemanbk1

    LOVE THIS article!!! LOVE IT!!! I am shaking while writing this response because I am so mad at the negative responses to Mr. Seinfeld claim. I am the mom of a child ‘on the spectrum’. One thing I know for sure – every person with autism is different. Some who are on the spectrum can achieve levels of success because of their difference! How can we DARE to express ourselves negatively towards this man?? Shame on you all!!! We don’t know the life he lived as a child. We don’t know if/how he struggled as a young adult! Stop with the judgement and blame! I wish this man well and respect him for all that he has accomplished with his life. Please stop the judgement and do the same.

    • Bjprecourt

      I just watched Jerry Sienfield’s interview with Brian Williams. I didn’t see anything that would upset me in the interview. He was just giving a personal observation of his feelings and how they compare to Autism. I still stand behind my earlier comment.

  • wantapeanut

    I think my concern stems only from the hope that the diagnosis be taken seriously. I don’t know Seinfeld personally and won’t begin to guess about his neurology. But if anyone with some level of social awkwardness claims to be autistic, I fear it may take away from the very real difficulties of those with the disorder, regardless of who made the diagnosis.

    I also want people in my life and at policy making levels to recognize that this kind of autism doesn’t reflect my son’s kind of autism. I’d hate anyone to think that we just aren’t trying hard enough, or if this is the way autism looks then what are we so worried about. That has nothing to do, of course, with Seinfeld, but does require ongoing education at large.

  • Vikki

    I don’t understand the negative remarks toward Mr. Senfield saying he has self diagnosed himself as having Asperger’s. Let us not quickly forget that in the past 10-15 years we have become so much more knowledgeable about autism. Which one of us have never self diagnosed ourself with a cold, a stomach bug, the flue…we do this because we are aware of symptoms for each of these. We often do not seek medical advice we simply say “I have a cold. I have been…”. Mr. Seinfield no doubt considered the pros and cons of whether to share his thought on the condition he believes he has.
    As a mother to a teen with Asperger’s I have chosen to allow him to share publicly when and if he is ever ready to share. I was the one to notice his symptoms or signs, I studied, I “diagnosed” him as possibly autistic. He did receive a formal dx. by a medical doctor, but many of the signs, symptoms of autism are well known. I say kudos to Mr Seinfield for feeling comfortable eneough to doscuss it. I hope my son will feel comfortable enough to discuss it at some point.

  • Janeen Herskovitz

    As the parent of a severely affected teen, who truly suffers, I will admit, it bothered me a bit to hear Seinfeld’s comments which appeared to make autism sound like a disorder of “quirks”. However, this was also edited by the media and we all know what the media can do to a perfectly good interview. I can respect the very different perspective of someone who has the disorder, compared to someone who is parenting someone with it. VERY different, But neither is wrong. I think ALL of us need to take a step back and understand that we will have different opinions on these issues, and we can still be part of the same community….”not that there’s anything wrong with that.” :)

  • jonathansills

    I confess to a certain degree of amusement at those who have been dismissing Seinfeld’s self-diagnosis, and at the same time dismissing the man himself as “arrogant” and “stuck up”. And guess which adjectives have been applied to yours truly in the past, by people who only knew me casually? It’s durn near symptomatic.

    Someone upthread who referred to him as “elitist” amused me even more. “You can’t join our club! You’re elitist!” The self-contradiction is just staggering.

  • amandalynn636

    You can’t really compare it to cancer…not many people self diagnose themselves with cancer.So is this it then? Anyone with a little social awkwardness can go ahead and read and article, a couple of books and go ahead and diagnose themselves as autistic. I don’t like to be around people, I must be autistic. Why don’t we just sell at home Autism tests at the store. Maybe if people start self diagnosing themselves people will start taking it more seriously OR you will have an over abundance of parents self diagnosing their children as autistic, because their child is a little quirky or has behavioral problems, and the diagnosis will become a joke.

    • Rachel Kenyon

      If a woman does a monthly self-breast exam, and feels a lump, is she not allowed to express her concern that she has cancer?

      This is not the stone age. We DO have at-home tests for many things – serious things – HIV for example. And a moderately intelligent adult *can* actually complete most of an autism assessment with online tools, THANK GOD, because scientists have been brilliant enough to make these SCIENTIFIC tests available through universities and research centers across the world. This is 2014. This is not the Dark Ages.

      How do you suppose most children are found to have autism today? Do you suppose none of their parents started with suspicion and Google? And then moved on to the sheer hundreds of online resources available to start that journey to answers? Did the answer come from a well-meaning school administrator dying to spend thousands on services? No. The journey started with either parental-awareness (as in younger children and teens) or self-awareness for adults. And then it took several months to YEARS for diagnosis to come.

      For an adult, that diagnosis has had a long time to stew around. For parents with children on the spectrum, like myself, it may come years after caring for an autistic child like a FLASH out of nowhere – suddenly your entire life makes sense and you never knew it until that very moment that you are on the spectrum. For an adult like Mr. Seinfeld – perhaps his entire life was built around his strengths because if you haven’t noticed, when you are on stage speaking into the glare of bright lights, there is no social pressure. People who claim he was so smooth on Leno? Really? Five minutes. I can pull my shit together really well for five minutes and I don’t need to tell you what it takes to do so, that is personal and private to me. But I’ll tell you, it takes a lot more than you can imagine. Look to the right of your screen. I spent three minutes on national cable news with Andrea Mitchell live – it was seamless and I rocked it. But you will never know what the cost of that three minutes was.

      You cannot deny that a human being has the right to seek answers for their unique challenges and inner questions that you know nothing about.

  • Jen

    I can so easily believe it. My son has Autism and is brilliant on stage. He can deliver rehearsed lines so easily on stage. (I believe it’s because of his lack of worrying about what others may think… he just doesn’t care) It has been a wonderful discovery for us as a family and given him a social opportunity he desperately needed. BUT he is the guy who sits alone backstage with his phone or ipad waiting for his next scene. Most people are laughing and having fun.. taking pictures of each other… which he find annoying. The wonderful thing about being an actor is “You act… The lines are written and handed to you. You get a chance to read them out.. to a small private audience.. test them if you will. The camera can edit and retakes can be done. My son is just getting into stand up.. and enjoys making people laugh. Congratulations to Jerry Steinfelt, for sharing his story and maybe it might just inspire others, like my son to keep working to see what they can achieve. All the best to Mr. Steinfelt, and all the other people out there on the spectrum, who have taken chances and gained success. My prayers with all the families who love someone on the spectrum, May they continue to find the strength to listen, guide, advise and keep loving their someone special.

  • Jodi Crooks Hendrickson

    Did you ask permission from the people you quoted here?

    • Rachel Kenyon

      The statements were made publicly on a public facebook page “Autism Daddy” with no expectation of privacy. I chose to leave their surnames anonymous.

    • Melissa P

      No, permission wasn’t asked but I would have granted it if she had.
      I stand by my opinion and don’t say anything on social media that I wouldn’t say outright to the individual(s) involved, so I have no issue with being quoted.
      Seinfeld’s comment was “On a very drawn out scale, I think I am on the spectrum”. This in and of itself is offensive. After all, if we “draw out” any scale wide enough, we all fit on it. Anyone who has ever struggled socially is suddenly autistic too. He has effectively watered down the spectrum for anyone to fit.
      He has both the means and ability to actually obtain a diagnosis if there is one. And his comment that it “isn’t dysfunction, just an alternate mindset” negates the struggle of families to reduce the stigma of autism and opens the door to the idiots that see our children “acting out” and think that it’s just a parenting failure.
      So yes, I find his comments both offensive and irresponsible. And I don’t have any problem standing by that opinion.

  • Rachel Kenyon

    The more I read and watch concerning this debate, the greater the irony. Autism, among many other contributing presentations, is most widely known as a “socially isolating” condition. We have been misunderstood as emotionless beings who lack empathy. Loners who choose a life of solitude. When the reality is that we love harder, deeper, and can connect on a far richer level with another human beings when given the chance – and the majority of us so desperately want for a true community. Not this. Not this chasm between who is an acceptable poster child and who is not.

  • Rebecca

    Wow! Applauding you for this post! It took me 2 years to accept that my son was not on par with the developmental scale! Why? Because I didn’t want to think that my son had a medical condition! I’m purposely leaving out the his “functioning” level because it doesn’t matter! We knew some things were challenging to him before we did days and days of testing that resulted in a doctor turning to his DSM for his official diagnosis. I mourned! The loss of the son that I had in my head from the time I was old enough to think about having children. I still mourn when new obstacles come up. I didn’t get him diagnosed for sympathy or attention! I got him diagnosed so that he could get the help he needed to make it through life! Hearing about people like Mr. Seinfeld, gives me hope! Reading this post so beautifully written, by someone with ASD, it gives me hope! My son’s medical condition or diagnosis, does not define him! When I reached out to the local “autism community” I hated how most of the time the first question was, “how severe is he?” It’s not a pissing match!!! It’s NOT about how much worse your situation is than someone else’s! It blows my mind that people make it into that! I often wonder how many adults who have ASD and were never diagnosed are in jail or completely unsuccessful in life because people just thought they were troubled, or stupid. Seinfeld is a success story, why is that bad!? How does the “community” expect others to accept differences if they can’t!? Thank you for posting this!

  • Renée Fraser

    Rachel Kenyon thank you so much for writing this! I wanted to write back to Autism Daddy myself, but hadn’t got around to it and wasn’t sure I wanted to bare all in a public forum. My daughter was diagnosed with high functioning autism at 4. She also has 22q11.2 duplication. And she has ADD and anxiety. She is 8 years old now. I was diagnosed last year with high functioning autism at the age of 34… I did get a formal diagnosis. I rarely tell anyone because I’ve experienced the judgements myself from people that don’t know me very well/at all…. I wanted the diagnosis only for myself. I never wanted to jump on the autism bandwagon. I’d give anything to be neurotypical. There are several successful people that have gotten autism diagnoses as adults… Steven Spielberg is one of them.

  • Jeannette Solimine (@revjeannette)

    Thank you all for your understanding and compassion for those who have severe autism and who cannot speak for themselves. We their parents are apparently monsters because we post the truth about our children on public forums that they will never read. Do you honestly think that we say these things to our children or in front of them as though they aren’t there? Do you think we fight for them everyday to get them the services they need to reach their full potential whatever that is because we are monsters? Do you think many of us wipe poop off of walls, are constantly repairing broken parts of our houses, have bruises, cuts and even broken bones as a result of meltdowns on our children’s part because we are evil? We LOVE our children. We do anything and everything we can for them. We don’t get breaks, vacations, weekends away, but that’s ok because our children are more important, even if it is very hard on us at times. We fight with school districts, insurance companies, hospitals, the state, social security, and so on trying to make sure that they will be ok when we are gone and there is no one around to love them and care for them. Not all of us have families that can care for our children when they are grown and we are dead or too old to take care of them anymore. When you all understand that this is a spectrum and that sometimes autism is a cruel debilitating disorder, then the autism community can be a community. It is your casting us out, not the other way around is the problem. Allow this post this or not as you like, Rachel. Your response to me has already shown me that you don’t consider us a part of the autism community because we can’t and won’t pretend that autism is a gift, at least for our children.

    • Renée Fraser

      You think it’s only children on the severe end of the spectrum that have violent meltdowns, put bruises on their parents, put holes in walls, poop smear etc? Wrong! My daughter is high functioning… I’ve dealt with poop smearing, late toilet training, violent meltdowns, head banging, skin picking, anxiety, depression …. From age 7 she has been talking about killing herself. She gets very upset daily about how other kids treat her at school, picking on her etc. She wants to be social/have friends but has very poor social skills. She struggles daily. She deserves help just as much as your child.

      • Renée Fraser

        And no one said autism is a gift. We choose to focus on the positives because that’s what gets us through each day. Also, a child can start out with severe autism and become more high functioning. Temple Grandin? Have you heard of Carly Fleischmann?

    • Rachel Kenyon

      For the record to all who have come here. I am an autistic adult with an autistic child and not only have I wiped the poop, fought for an autism outplacement, but I’ve been to The White House and passed Congressional legislation for autistic children. My daughter was also born with a rare genetic condition. Don’t get me wrong, for some of us, it’s an evolutionary journey. Sure, I had my moments of anger and I complained that I had to fight. But those were rare and I quickly learned they did no good for my daughter or anyone else. Talking about her “deficits” is only appropriate in the context of obtaining services for her or advocating for better services for ALL. Which I do and have done beyond most, while also serving as a military spouse. We all do the best we can, but I am sorry that I see no room for using my daughter’s autism or any of her challenges or mine to judge another, and I certainly would not display her challenges for public debate over a comedian’s disclosure about his own autism. That is what divides our community. Your love for your child isn’t what is questioned here, it’s your love for others.

  • Renée Fraser

    Did you know Down Syndrome is a spectrum too? You can have mild, moderate or severe Down Syndrome. But no one asks “how severe is it?” to a Down Syndrome parent…. It would be rude/offensive …..

  • Melissa

    If a person self diagnoses cancer, everyone would say see a doctor… Jerry, see a doctor… If you are fine, if you aren’t fine… Find out and then figure it out…

  • Julie

    when your child is diagnosed and “labeled” it is actually beneficial in the education arena. The different labels aren’t to restrict and define but to qualify for different services in the school system. There are actually a lot of great benefits to being “labeled” that a family can take advantage of to help our children. Do I like it? No but it is truth I have a non verbal low functioning autistic 7 year old but he gets amazing services and help because of that

  • Heather C.

    I have two children on the spectrum (the “milder” end) and I struggled for years before finally being diagnosed with ASD as an adult (I self-diagnosed first). Talking about having quirks and social awkwardness is the more “PC” area of symptoms to discuss. Because that’s what the public sees more. Often people with “milder” autism clinically struggle with a myriad of things behind closed doors that is vastly different from what others see day to day. We still have sensory processing impairments (some of us fairly severe, even being diagnosed as Aspergers). I still have full-blown meltdowns that involve headbanging, hand-flapping, screaming, and leave me completely non-verbal for hours (and then take days to recover from). Autism still effects every single area of my life. I’m fundamentally wired differently and nothing will change that.

    Still, Autism is a SPECTRUM, and it’s ridiculous to say that just because someone with autism is not like your child (which, by the way, adults present differently than children, regardless of if they are mild or not). There is a saturation of awareness and tragedy rhetoric in our society surrounding severe and classic autism. So much so that when people on other points in the spectrum speak out, they are immediately told to shut up because they don’t “qualify” as autistic according to someone else’s idea of what “autistic” should look like.

  • Social media reaction to Jerry Seinfeld’s “I think I’m on the spectrum”

    […] Kenyon in her blog post Dear Autism “Community”: Do You HEAR Yourselves? in a response to the angry and negative […]

  • Mike

    Jerry Seinfeld is famous for his brilliant ability to identify and make light of the very subtle nuances involved in human interactions and relationships. Not exactly a hallmark feature of Asperger’s. On a very drawn out scale, all of us are on the spectrum. What Jerry Seinfeld said to Brian Williams does not make him a ‘high-functioning celebrity with Autism’ any more than he’d be a high-functioning celebrity with Alzheimer’s if he had said to Brian Williams “I keep forgetting where I put my keys. I must have mild Alzheimer’s”. If he wants to share his stories about the difficulties he struggled with in childhood on a daily basis because of his disability, I would certainly encourage him to do so. I’m one of the people who aren’t lining up to pat him on the back for his comments to Brian Williams.

    • Melissa P

      Thank you Mike! I could not agree with you more.

    • Rachel Kenyon

      What continues to amaze me are the folks who plainly argue that a grown person with autism couldn’t possibly understand ANY nuances of social interaction, as if they have not been observing and obsessing over what they all MEAN since they were kids. WE *CAN* ACTUALLY LEARN SHIT. What our kids are getting in 30-40 hours per week of ABA, us adults had to figure out in 30-40 years of trial and mostly error. Mr. Seinfeld is telling us now that it’s been a damn struggle, every social interaction, he has laid it all out there. How does that affect any Joe or Jane Citizen so deeply personally that they judge Seinfeld and feel some right to demand he reveal his personal secrets in order for them to sleep better at night knowing that Jerry Seinfeld didn’t wake up last week and decide to make their lives miserable by suspecting he is autistic?

      Autistic adults, whether diagnosed at 2, 12, or 60 years old, have spent a lifetime scaffolding language and scripts to get by, leaving a brief social encounter and needing days to recover, never understanding if people are bullshitting you, [https://stimcity.org/2014/10/27/autism-the-evolutionary-cure-for-bullshit/] always feeling naïve to others’ motives, and yet managing some form of surviving or even success, but with huge costs along the way. And every person who shouts with outrage because they claim to know autism and swear Mr. Seinfeld could not possibly be on the spectrum unless that spectrum were opened to humanity itself conveniently ignore in this argument ALL OF THE SCIENTIFIC EVIDENCE THAT THEY TOUT WHEN SPEAKING OF THEIR OWN OR LOVED ONE’S AUTISM.

      Echolalia? Scripting? No. A comedian would never do that.
      Write a show that IS entirely about literal interpretations of everyday stupid shit? YES. Why YES. “Seinfeld” was the manuscript for autism – I don’t want to wear a puffy shirt either! His character on the show wore the same clothes all the time, didn’t like change, ate at the same coffee shop every day, avoided gatherings and had only a couple of friends and really – he didn’t even like them that much! OPEN YOUR EYES, PEOPLE!

      We’re not here to steal your thunder or your kids’ therapies. We’re here because we are autistic, too, and we deserve community like everyone else. We deserve to take part in the discussion, to advocate, to heal, to grow, to prosper, to share, and to love one another. (Yes, we know how to do that, too.)

  • Mike

    I’m not sure why the above rant is posted in response to my comment. You seem quite angry and defensive. I don’t recall suggesting that a person with Asperger’s couldn’t possibly understand ANY nuances of social interaction. I don’t recall judging him in any way. (I’m a HUGE Seinfeld fan. I’m not a fan of the comments he made in his interview, but that’s not what it means to ‘judge’ someone). I also don’t recall demanding him to reveal anything, nor do I recall shouting with outrage at any point.

    Part of “community” involves being tolerant to others opinions, even when you don’t agree with them at all. I disagree with your opinion about what his show was about, I disagree that people who don’t see his character as an Aspie need to ‘open their eyes’, and I disagree that his reluctance to wear the puffy shirt was for any reason other than it was hideous. But I have no reason to launch into an angry rant about it. Different people can look at the same thing and see something different. It doesn’t necessarily mean that one person is right and the other is wrong.

    Instead of providing a respectful response to my comment, you seem to have placed many words in my mouth and responded angrily to what you think I may be thinking, instead of what I actually wrote.

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