Friday, November 7, 2014

Seinfeld:"I'm Autistic" Yada yada , you're not helping...

You're autistic?!  Yada, Yada, you're not helping the autism community...


Jerry Seinfeld's autism revelation to NBC's Brian Williams
“I think, on a very drawn out scale, I’m on the spectrum,” Seinfeld told the NBC Nightly News host. He then elaborated about what exactly he has noticed that indicates to him he may be on the autism spectrum. “[I'm] never paying attention to the right things,” Seinfeld said. “Basic social engagement is really a struggle. I’m very literal. When people talk to me and use expressions, I don’t know what they’re saying.” 
Seinfeld went on to say that he doesn’t view this self-diagnosis as dysfunctional. “I just think of it as an alternate mindset,” he said.

Let me start out by saying that the wife and I are HUGE Seinfeld fans!  We know the show like the back of our hands and we make Seinfeld references in our lives every day...

"Yada yada ", "Get out!", and the lesser know "vegetable lasagna" are 3 regular expressions in our daily vernacular in our home.

We love the show.  We love him as a comedian.  And as a person.  We just think his outlook on life is spot on... and his latest autism revelation will NOT lose me as a huge huge fan.

But, yada, yada, yada... with all that being said...  I am not thrilled about Jerry's autism self diagnosis.  I think it's stuff like this that puts an even bigger divide between the low functioning community & the high functioning community, between the parents of severe kids, and the parents of aspie kids...

Especially that last line...

Seinfeld went on to say that he doesn’t view this self-diagnosis as dysfunctional. “I just think of it as an alternate mindset,” he said.


That gets into the debate whether autism is a disorder or just a different way of thinking.  And y'all already know I feel about that.  My son's autism is a disorder.  It prevents him from doing so much stuff that his typical peers do.  yep, I compared my son to a typical kid, you got a problem with that?
:-)

And to have such a HUGE celebrity that we all know so well, for so long, just throw his hat into the ring and say he's autistic, in my mind it's almost like he's saying something to the effect of, yep, I'm autistic too, and I've lived an amazing life up to this point, so it's not a big deal...

To me it just diminishes the type of autism that my son has... and the struggles that my son has due to his autism.  Seinfeld saying that makes me feel even less connected to those on the mildest end of the spectrum.

How can Jerry Seinfeld have the same "disorder" as my son?  The aspies & people on the highest end of the spectrum must be living on a complete different planet from my son!  How can these be the same condition?  Do they share any of the same traits?!

And Jerry should know better.  The one time we saw him do stand-up was at an Autism Speaks benefit show in NYC.  He's done a lot of charity work for the autism community.  He's seen the kind of debilitating autism that I and many others are dealing with...

Jerry, what good does it do to add your name to the list?  How does that help you... or us in the autism community?

I've written this in a previous blog post, but I think it's fitting in this setting...

"...lately when autism is on the news it's a feel good story about a high functioning kid doing something great and profound. And I think that spins autism in too positive a light. It makes people think that autism is not that bad. They’re just a little quirky like the Asperger’s rocker on American idol. I think America needs to see the dark side of autism more often, like my son, the nonverbal, non-potty-trained 8 year old who bangs his head, won't eat, has crazy stomach/ bowel movements and severe ADD & ADHD on top of his severe autism.
I like to read the feel good stories too...but the feel good stories are all you hear/ read/ see about autism in the mainstream media. And I honestly think when we are fundraising or trying to get more government $$ for autism if all people know are the feel good stories, "why give them research $$, they're just quirky kids...." the kid that scored 15 points in the basketball game, the aspergers guy on amazing race, etc..."

And now we can add the newest poster child for quirky fun loving autism, Mr. Jerry Seinfeld.

Thanks a lot Jerry!  Not!

Now "Get Out!!"
 


THE END...

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43 comments:

  1. Thank you so much for writing this. I totally agree on where you are coming from in response to his casual remark of having autism. I feel like he's demeaning what autism is really like day to day. It's almost like having autism is the latest crave so it's cool to announce you have autism. I'm just disappointed in him right now and am worried that other "famous" people will be jumping on the bandwagon.

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  2. I totally agree with you. My son hss several "meltdowns" daily. I have tons of holes in the walls of my home, trashed furniture, have to pay for broken windows on a regular. Then add you mentioned, there is the soiled underwear from accidents, bed wetting, he constantly needs to be watched because he errors from my home out of Windows etc and had no concept of danger. He just reacts without reason of cause and effect. Did I mention my son is 9. We also had the misfortune of being diagnosed with Epilepsy this year too. My son is one the children. His siblings are 14 & 2. Our lives have been turned upside down from autism. We have tried everything! Starting on a tight schedule, ABA therapy, sensory therapy etc you name it. Meds, diet... It helps but very little. We cannot go to Disneyland etc, because of his sensory issues, plus he has severe anxiety and major social disconnect. I cry a lot at night, I pray a lot. Some days I sit and envy the other mother's who complain about their lives and seriously want to punch them square in the jaw and shoot "Hello! Do you realize how lucky you are! Sounds a day in my life!!!" These ate the stories they need to post to get recognition on what life with Autism is really like. I could go on and on about hospital visits, doctors appointments, blockages in his intestines, you name it! I know you already know this though. Anyhow, I totally agree with you and appreciate your blogs. Most days I feel so disconnected from society and feel like an alien... life I have nothing in common with anybody. Your blog gives me an outlet and reminds me I'm not alone.

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  3. I agree too and I was a Seinfeld fan. Not now. I'm sick of public grandstanding with whatever mental illness fad happens to be popular. Meanwhile we live with children who wear diapers sometimes for their entire lives. I am also sick of people self-diagnosing because if you give the right answers, and we all know what they are if we want this diagnosis a doctor will give it to you.

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    1. A lot of doctors can't or won't diagnosis adults..I knew I had P.D.D,it took my fifth psychiatrist to diagnosis me as PDD-NOS. I am 25, never had a girlfriend or job, can't maintain friends, very ADD minded...but could take AP history, but needed to be taught basic social skills through High school

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  4. So then because my son is high functioning his Autism doesn't matter?

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    1. Is your son as high functioning as Jerry Seinfeld?

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    2. I run into the same kind of issues. It is a shame that my son isn't challenged enough. I am sure it will have a positive effect to slam someone who has been helpful to the Autism community because they aren't severely affected.

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    3. My son is highly functioning and with time and help , perhaps, can be better functioning that Jerry Seinfeld. There are a lot of services that are not aimed to help improve a highly functioning child. Although I empathize with people with more severely affected children, some do not have my sympathies because although I see their challenges they always seem to trivialize mine. I am tired of apologizing or explaining why my son can do certain things, why he doesn't "look" autistic, why a little better is not a place to plateau. I have worked hard and used every resource at my disposal and ultimately my only measure of success will be his happiness.

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  5. His whole point is that there is good and bad! Yet, everyone only reports on the good side of Autism. Like he said what about the bad? I have two on the spectrum and one is potty trained the other is not. One that is is more severe then the other, goes to the potty but the other still goes in his pants, but on the occasion he goes to the toilet. But he gets so in to what he is doing, like his homework or reading or playing a game or just playing he forgets or doesn't want to leave and miss out. I understand where he is coming from but just by claiming you may be on the spectrum doesn't mean you are! But as he stated the only stories they report is the good ones, then the ones that fund it may start thinking that why fund all of them, why not the ones that make the best progress. And I'm sure that one day they will think that. Just sayin'.

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    1. Testing by a licensed psychologist or psychiatrist, a must! Specialists in the field; groups; etc. The above parents are exactly correct...thanks for sharing!

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  6. I work in autism support for low functioning adults, so I do understand the gravity of what you are dealing with - albeit not in my home. I also, like Seinfeld, see myself on the spectrum. I think this makes me very good at my job as I can empathize, and I can help to broaden the capacity of the people I work with. And I do.
    I am not sure I agree with your post. There is a spectrum, it is fluid and vast. Some people suffer untold misery, some are still quite debilitated and live as if separate from their world - but can manage. A lot of people improve as they get older. Autism really is a verb not a noun.
    A while ago I sent you a link to my book. I really hope you read it. I would love you to review it. It explains via the 'Polyvagal Theory' by neurobioloogist Dr. Stpehen Porges, why there is a spectrum and why there are so many physical/digestive problems with associated with autism. It is smart and helps us to see autism as a process, rather than a disease.
    http://www.amazon.com.au/Reframe-Your-Thinking-Around-Autism-ebook/dp/B00NQMJTXS/ref=sr_1_1?ie=UTF8&qid=1411286026&sr=8-1&keywords=reframe+your+thinking+around+autism

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    1. Autism Daddy's a curist blog. it would be best to find another anti-cure blog

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  7. Another thought provoking post. I am so disappointed with the celebrities that jump on the latest 'disorder' that is in the news. I think it demeans the families that truly are impacted. We are lucky in that our daughter is very high functioning and we don't have many of the other health issues so many families face. Thank you for being the one who is willing to talk about the bad as well as the good.

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  8. Seinfeld's comments are disappointing. If he really is autistic, koodo's to him for his progress. He just make sit sound like its no big deal. My daughter is higher function with her autism, but is still like a 6 yr old in so many ways, and will probaly always will be. She turns 14 this year. Dealing with autism is hard and its like he disregards the struggles that many of us face. Goodness I wish my daughters disorder was just "a differant way of thinking". My heart goes out to all the autism parents out there that deal with the good and bad of the severly autistic kids. I think you folks are amazing.

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  9. Autism is "a different way of thinking" , a different way of feeling, seeing, hearing processing. It is different in each case. To trivialize any person who feels they are autistic is to cause shame to the entire community. I do not feel that Seinfeld had anything to gain by this admission or said anything to diminish the challenge. I am encouraged by his comments just like I am when other people overcome a challenge. The same way I felt when I ran across an interview with Dan Akroyd and he explained that he felt he had Aspbergers. I think this is a perfect example of what is wrong with some peoples thinking. I tell my son he has a glitch and that I am constantly proud of how hard he works to improve to which he replied "That makes my heart happy" You can look for the good in the world or dwell on the bad. Trust me your bitter opinion of what you read into this interview will not make you or your families life any better (or worse). Why shouldn't kids on the spectrum have people to look up to?

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  10. Your commentary does not spell bitter to me at all. I'm not upset with Seinfeld, but this self-diagnosis is essentially meaningless to me. Hey, I could self-identify in this way too. I toe-walked and hand-flapped as a child ( probably still do on occasion). I am introverted with a few obsessive interests also,.I was a quirky, somewhat unpopular sort. BUT, I spoke on schedule, I graduated with honors in English, and I did very well in a customer service job for over 25 years. My communication skills are above average and I can read people fine. So, it would be a vanity exercise for me to wave the autism flag. My chilld, OTOH, is classically autistic. He is non-verbal and will never hold any type of job. Not the same thing, Mr. Seinfeld. BTW, my mom called me this morning because she was so excited about this revelation. Sigh....

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  11. If only all our kids were as "autisic" as Jerry Seinfeld and would be worth gazillions by the age of 60, so we didn't have to worry that when we die, they will be left penniless and without help in a community home, God knows where. I totally agree with you and understand what you're saying ... completely UN-dismissive of higher functioning children (thank your lucky stars, people, instead of whining that you don't get enough sympathy!) and completely spot-on with identifying the issue of celebrities clinging to a diagnosis because they feel it makes them more relevant or sympathetic or whatever their goal is in broadcasting a self-diagnosed issue in order to gain attention from a fawning media. If he has it (which I sincerely doubt), then bravo for making the most out of a tough situation, but his situation is nowhere similar to those who truly have the disorder. Did his parents need to fight the insurance companies and schools to get him the assistance he needed to learn? Did he have a dearth of friendships and close relationships? Did his parents spend 4 years (or more) potty training him? IMHO, if you want to spread the spectrum that far, we're ALL on the spectrum in some capacity, which defeats the purpose of having a "spectrum" at all.

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  12. You deal with the autism in your life one way -- he deals with it another. So, what's wrong with that? You haven't been inside his head, his world or his shoes. Live and let live.

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  13. It all comes to spectrum disorder. There is a common mechanism of communication that manifests itself in a wide variety of ways. I think if you "self-diagnosed" yourself with autism, you probably should not publicly say you have autism. You should go and get a medical diagnosis if it is that important to you. However, there are those on the lighter end of the spectrum who have done well, but when we read about, focus, or give accolades to those individuals, we must remember that there are individuals on the opposite end who still need our help. What can we do for them to bring them up? I think if someone is truly on the autism spectrum and is successful in career, I don't see any harm in bringing attention to autism spectrum disorders IF they use that attention to focus on those who still need help.

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  14. I can completely understand the views everyone has,in my opinion I am extremely lucky because I have two ASD children both high functioning but one better than the other---well not even better just different than the other. I think the whole point of this whole situation is that we shouldn't be portraying the good and the good only but we shouldn't portray the bad and the bad only, its suppose to be all about what happens to these children and what we can do to make each and every one of their lives the most perfect it could possibly be whether that means special schools, special therapies or simply a support system to the family. There should not be people out there saying I believe I am autistic without have been seen by a professional and being diagnosed as such, it just makes it seem like people are making fun of other or making it seem like their life isnt as hard as it is. I am not saying my life is any where near as hard as someone with a severely autistic child but i do think that we all live our different battles with this diagnosis. Now im sure someone will post something in response to this and either agree or disagree or possibly even try to put me down....I am the mother or two autistic boys and NOTHING you can say will or wont surprise me :)

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  15. I am I complete agreement with the people that said it is an insult to people really struggling for jerry Seinfeld to say something like that. What do you guys think of the mother who through her kid off the bridge in Oregon?

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  16. Us in AspieLand have our issues too. Stims, coordination issues, sensory issues, constipation, social and behavioral issues, some have emotional problems. It's just high-functioning autism without the language delay. I'm one of the happy ones, but even I can have intense emotions. Like I've been really frustrated already. I turned 25 Sunday and my blog-day was this Tuesday. My blog's one year old. I have a picture of me on my blog. A friend took it when my family went to the fair this past summer. I cropped my parents out, so it's just my smiling face.

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  17. You know what maybe the reason you feel that was is because you cannot fix your broken son. You him to be normal like you. I know you are frustrated but don't take it out on your hero. If you want inspirartion go read Carly Fleishman's books. She is also mute.

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    1. *VOMIT*.. there is ONE autistic person in the world so go seek her as yoru savior crap. Seriously ONE can almost type.. BIG fckign deal! He doesn't want his kid like him.. he wants his kid happy and able to wipe his own ass you .. ugh *deep breath*

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    2. um, actually, i think he wants his kid like him. he wants him to speak physically when he may not be able to, in which case, he should be taught sign language, writing, and/or use a siri-like machine to interact. he doesn't want that, i don't think. most people don't want it. they insist that he speak physically or he's "diseased".

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  18. Look I've heard this argument a thousand times. How can someone like me, with mild autism, claim that autism is not a disorder, and just, as Seinfeld said, an "alternative mindset", when my son has severe autism.

    The answer is simple. Just because you dont think he understands, doesnt mean he doesnt.

    The problem with neurotypicals is that we all have to fit in your bubble of normality. If we dont, we are "disabled" or have, as you say, a "disorder".

    You believe a "normal" child needs to talk, and ride a bike, and make friends, and do things that other kids do. Your child doesnt. So instead of LOVING your child, you call him disabled, say he has a disorder, something wrong with him, that hes "broken."

    Why? Because he wasnt what you wanted in a son. That isnt the son you wished for.

    But you fail to realize he's better. He's better than any son you can ever dream to have, if you stopped treating him as disabled and started tapping his potential. Your son, at his age, is smarter than everyone in this chatroom. Inside your son's brain could be the cure for cancer, the expansion of quantum physics, or the next big mathematical algorithm.

    Your son is not "broken". Your son is a god. Unleash him.

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    1. Another very very ignorant person. "he MUST understand the parent is just stupid and mean". We as parents KNOW what our kids understand and what they don't. We are with them and tlak to them every minute of every day for decades. My kid does NOT understand what I'm saying. And I KNOW it as a fact. You are a self serving jerk and seriously makes huge and even dangerous assumptions. You realize you just put dwn a HUGE disabled community and outted yourself as an idiot

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    2. omg Sean you are an absolute moron. That is the biggest sack of shit I've ever read. He loves his kid more than anything you've ever loved in your life. You know NOTHING about this DISEASE

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    3. autism is part of someone, truly. even Temple Grandin said that. you can't hate the autism without the person. why are you parents so bitter and not willing to listen? is it because you believe in this whole "bubble" mentality too?

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    4. There it is. "Disease". You see your children as damaged goods. I want you to look up facilitated communication. This has a proven track record. Several things have worked with nonverbals that you may have not heard of or tried. But instead of trying, you give up.

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  19. This is how I feel also. I could say I'm a bit on the spetrum.. I'm shy, bad with social engagements (most people are) and I've done several online tests which say i'm not quite an aspie... but ugh the way you worded it.. it's making a huge divide between the low and high functioning and yes this belittles out fight. I've even started hating on these self professed or high functioning aspies. they don't get it. I apreciate their struggles but they are married, have kids, have jobs, are functioning and "look" healthy and they can write long drawn out paragraphs of why autism shouldn't be cured.. meanwhile.. they know NOTHING about autism.. real autism.. yeah I said it.. REAL autism.. the kind who DON'T get married or have kids unless they're raped, can't speak, can't use the bathroom, can't cook, will never hold a job and will never live alone. Theya re out on a rampage to say.. autism is just fine.. and now the aspergers is no longer a part of the dvsm they LOVE to say they have autism... it's really bad. They did this for health insurance reasons and because they are ignorant they are going around makign a joke our of this disorder that NEEDS a cure, NEEDS prevention and everyone is in immediate danger of getting it with their own kids now.. soon it'll be 50/50 chance of whether your kid ends up in a home or ok when you're dead. And by soon I mean a few years. It's so frustrating!!!

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  20. many of the negatives associated with even the "lower functioning autism" has to do with societal expectations, the view that it's something that's "bad", thereby causing fear and depression in parents, and these parents' lack of ability to handle this difference.

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    1. I'm not getting what you are trying to say Nate sportyboy.

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  21. The fact is, if your son has an autism diagnosis, and he was diagnosed with ADOS (or another gold standard diagnostic instrument) he and I do have many similar traits, despite the fact that I am verbal and he is not. That's not to dismiss your son's autism. I believe you when you say he is very disabled, and from what you can see, his autism looks like disability not difference.

    I don't know if your son is part of any genetic or biomarker studies. I am, and one of the things I have learned is that I have markers that match others with autism at all points on the gift and disability range.

    That is one of the great mysteries of autism. It's not a slight to you, me or anyone.

    When someone says "I'm on the autism spectrum" why is it that one of the principal reactions is to challenge the truth or accuracy of his statement? What does that say about our community? When someone goes on a breast cancer forum and says "I got a mammogram and I'm scared I have cancer" people do not say, "go away, you're lying." Who are we to question his words?

    I have no idea what Jerry Seinfeld is or isn't. I don't even know if he helps our community or not. I do think more awareness is good, and I hope we develop tools to remediate disabilities like you describe in your son.

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    1. Unrelated note, just wanted to say I am a huge fan of your memoir Mr. Robinson. It was a childhood birthday present, I still have it to this day.

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  22. You're aware that those of us on the high-functioning end of the spectrum are shunned, humiliated, bullied, beaten, threatened and harassed by peers, teachers, parents, and co-workers, yes?

    It may not do you much good, but it does a lot of good for those of us with Asperger's and HFA.

    I'm sorry your child is suffering and I'm sorry that you are suffering. I'm just not sure why that means that ONLY you suffer and the rest of us should just stfu. It sounds bitter, condescending, and dismissive.

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    1. yes, and he doesn't even "suffer" from the autism.

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    2. Whats worse is he is actually bullying his own son by refusing to recognize him as a gift, but rather as some disabled freak.

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  23. All of our lives they bully us for being "weird". Now they bully us for not being weird enough. NTs are just bullies. They are hardwired that way.

    They want us to always be alone, isolated, friendless. It just makes them feel good. It's like watching the parents of a trans kid stomping into the LGBT community and insisting that lesbians are not real and must be silenced because trans women have it worse.

    And it's obviously the lesbians who are dividing the community.

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  24. Just because somebody is "High Functioning" doesn't mean they have no problems. I have suffered from IBS, Sleep Apnea, and other illnesses my entire life. I barely have made a dent in my career because I'm always sick and without energy. The slightest noise annoys me and makes me angry. I engage in Stimming everyday. Although I believe I'm on the Autism Spectrum, I haven't been diagnosed. Giving diagnoses is a business, I have found out. Most places will charge you $5k, even with insurance. Who says those with Aspberger's are having a ball with this illness? How revolting.

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  25. I have Asperger's. I have two children with Asperger's. It is a disorder, plain and simple. It impacts our life every second of every day.

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  26. I totally feel you on this. People are so sensitive to sharing the realities of Autism because they don't want to "demonize" people diagnosed with it. But the truth is Autism CAN be ugly...really ugly, excruciatingly painful, and devastating.

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  27. Oh that is very bad news that your kids are facing aspergers syndrome disorder. In the newspaper I had read several reviews on the topic of famous people with aspergers and the list was very long. So, I will say please don’t worry about this.

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