Asperger Syndrome is not a disability, just ask Lenny Schafer

6 Aug

Lenny Schafer wrote one of the most insulting comments I have seen on the Age of Autism blog in a long time. This is actually old news–the comment was made on Luly 13th. I missed the comment, but how did I miss that it was, no kidding, picked as an award winning “comment of the week” by the “editors” of the Age of Autism blog.

If you didn’t see it, here is Mr. Shafers, award winning comment from the Age of Autism blog:

“Disability” is not a literary term open to subjective interpretation. It is a forensic, legal term defined in documents like the DSM-IV for the parsing of government entitlements and insurance compensations. Asperger Syndrome is not defined as a disability. Those with Aspergers do not get Social Security Disability benefits. They are not entitled to most state entitlement disability programs and are not qualified to park in disabled parking zones. Those with Aspergers ARE disadvantaged and deserve support and our advocacy for them, but not at the same levels for the disabled. Let us stop interchanging the term “disability” with “disadvantage”.

Also, the term “high functioning autism” is a street jargon misnomer and has no clinical definition, despite it widening use. It is a term that also trivializes autism. It is oxymoronic. Autism is defined by disability, lack of function. Is there such a thing as high-sighted blindness? Or high-hearing deafness? Perhaps “HighER Function Autism” might make more sense because it is not self-contradictory. (We then wouldn’t need the redundant “Low Functioning Autism” label either.)

The whole autism spectrum labeling is a mistake, in any event, for a number of reasons I won’t go into here. However, we are stuck with it. Let’s get clear on related word meanings. Lack of good communication skills is a definite disadvantage, but not necessarily a disability.

And let us hope that the upcoming DSM-V gets clearer about defining autism only as a disability — and kicks the high functioning ND autism squatters onto the personality disorder spectrum where they belong.

There is so much that can be said, point by point, in response to Mr. Schafer’s comment. But my guess is that most readers of this blog need no commentary to realize what a grossly insulting statement Mr. Schafer made.

What boggles the mind even further is that this was a comment to Mr. Jake Crosby’s piece, “Autism, Asperger’s: Who is Truly Disabled?“, a piece all about how Asperger syndrome truly is a disability. Mr. Crosby’s concluding statement in that piece was:

Unfortunately, that is what’s happening, but as a person with Asperger’s I can tell you that I am truly disabled, albeit much more mildly than others with autism.

While we have disagreed on some points, Mr. Crosby and I have been having a good discussion in the comments of this blog. I believe we both agree that Asperger Syndrome is a genuine disability. I couldn’t see him agreeing with Mr. Shafer’s comments, so I went digging to see what comments Mr. Crosby made.

Here are two comments by Mr. Crosby in response as posted to AoA:

I’m a contributing editor to this site, but played no role in Lenny Schafer winning the “comment of the week.” His comment isn’t just grossly offensive to parents of those on the higher end of the spectrum, but also to those of us ON the higher end of the spectrum.

and

Schafer’s post is wrong on so many levels. It is the comment of the week alright, the worst comment of the week.

I almost didn’t post Mr. Crosby’s comments. I didn’t want to go for the easy, “look there’s dissension in the ranks at AoA” message. As I said above, Mr. Crosby and I don’t see eye-to-eye on all subjects. But I can still recognize and respect the courage it took to speak out like that. Mostly, it is worth noting that Mr. Crosby doesn’t share Mr. Shafer’s opinion.

The Age of Autism has officially closed comments to Mr. Crosby’s piece and to the “commenter of the week” post.

I’d love to see the comments they deleted.

99 Responses to “Asperger Syndrome is not a disability, just ask Lenny Schafer”

  1. msamericanpatriot April 11, 2011 at 10:04 #

    Excuse me but yes they are since they are BOTH classified as intellectually challenged and BOTH not widely acceptable in society. Look it up for yourself.

  2. Clay April 11, 2011 at 10:55 #

    I’m thinking that there are many different degrees of being
    intellectually challenged.

  3. msamericanpatriot April 11, 2011 at 11:23 #

    Thank you Clay.

  4. daedalus2u April 11, 2011 at 23:04 #

    msamericanpatriot do you understand what RAJ linked to? They found an odds ratio of 1.19. That means that using the genetic factors they found, they could find a group that had an odds of having autism that was 1.19 higher. So if the average odds of autism are 1 in 100, this genetic test would let you know if it was 1.19 per 100. 1 in 100 vs 1 in 84.

    If that change is enough for someone to base aborting a fetus on, if there is a 1.19 per 100 chance the fetus will turn out to be autistic, that person should do so. They pretty obviously can’t handle being a parent and any child of their’s would be better off not being born, ASD or NT.

    DS and ASDs are both mental disabilities to some degree. The prenatal test for DS is essentially completely accurate. If they find trisomy 21, then the fetus will be born with DS (but the degree of severity of symptoms is not predictable). If they don’t find trisomy 21, then the chances are much less. Probably around 0.99+ vs 0.01 (but that depends on other things).

    In the case of the autism “test” that RAJ linked to, a “positive” test gives a 0.0119 chance, a “negative” test gives a chance of 0.01.

    0.99+ vs 0.01 is very different than 0.0119 vs 0.01.

  5. msamericanpatriot April 11, 2011 at 23:14 #

    You idiot. Have you actually talked to a genetics person. I have. So I have PROOF to back up what I am saying. You don’t unless your one yourself. I spoke to the person whose article I posted on here. I befriended him on Facebook. He told me his own son is autistic. So he has a vested interest in the genetic predisposition to autism and knows the power and the damage a test like I am talking about can do. So get off of your high horse and face the music. Your WRONG!! In fact both of you are wrong. I am not because I spoke to the expert. I understand my friend. His work is blessed by God. Can you say that about the genetics person you are speaking about? I bet not.

    http://gerardnadal.com/2010/05/19/autism-genetic-testing-abortion-and-prevention-part-i/

  6. sharon April 11, 2011 at 23:23 #

    @msamericanpatriot, you are starting to sound like a troll.

  7. Sullivan April 11, 2011 at 23:34 #

    msamericanpatriot,

    for the most part I am allowing your posts through and really not reading them. But here’s a sore point with me: don’t call people idiots on this blog. The term derives from old terms for intellectual disability. Having intellectual disability is not something to ridicule. Having high intelligence and misusing it–that is a shame.

    Second, the “I’ve spoken with someone whose work is blessed by God” argument isn’t very convincing. If you want to call someone else for being “on a high horse”…well, “blessed by God” is about as high a horse as one can come down from, now, isn’t it?

  8. msamericanpatriot April 12, 2011 at 01:44 #

    1) Idiot comes from an ancient Greek term whose meaning means one who could not vote or hold property. I learned that in my Partners in Policymaking session. I know they have them over in England.
    2) I am calling my friend the genetics person blessed by God because he choosed his line of work because of his autistic son. Being blessed by God is NOT a high horse. It means God knows what they are going through and are giving them some silver linings amongst the gray clouds that society deals out to them on a daily basis.
    3)High horse because he (my friend the genetics person) and I both agree that the world apparently can NOT handle the truth.
    4) I am NOT ridiculing intellectual disabilities. I am stating the fact that after Down Syndrome, babies to be found with the genetic marker for autism will be ABORTED here in America. 80 to 90% of Down Syndrome babies are aborted every year and soon those stats will be applied to babies with the autism marker.

    • Sullivan April 12, 2011 at 01:58 #

      “Blessed by God” is an appeal to an ultimate authority. It basically has nothing to do with this discussion.

      Idiot was used as a clinical term for intellectual disability about 100 years ago. I doubt you intended to state, “You are all unable to vote and hold property!” Whatever your intention, please don’t use the term again here as an insult.

      Please stop referring to your facebook friend as an authority. If he wishes to discuss issues here, that would be one thing. If you are unable to defend the ideas he communicates to you I am sorry, but citing him as some defense is not helping your arguments.

      As to the abortion of DS fetuses–yes, we know that quite well here. Do I fear a world where autism has a prenatal test? Yes. Given that, is there any point in continuing this discussion?

  9. msamericanpatriot April 12, 2011 at 10:39 #

    From Wikipedia the TRUE definition and history of the word idiot:

    http://en.wikipedia.org/wiki/Idiot#History
    Idiot as a word derived from the Greek ???????, idi?t?s (“person lacking professional skill,” “a private citizen,” “individual”), from ?????, idios (“private,” “one’s own”).[2] In Latin the word idiota (“ordinary person, layman”) preceded the Late Latin meaning “uneducated or ignorant person.”[3] Its modern meaning and form dates back to Middle English around the year 1300, from the Old French idiote (“uneducated or ignorant person”). The related word idiocy dates to 1487 and may have been analogously modeled on the words prophet[4] and prophecy.[5][6] The word has cognates in many other languages.

  10. Mike Stanton April 12, 2011 at 10:47 #

    Ms American Patriot
    earlier in this thread you revealed that you have recently been diagnosed with Aspergers Syndrome. So you are naturally concerned about a genetic test that could be used to abort people like yourself. If such a test could be devised I agree that, as with Downs Syndrome, many people would be persuaded to abort rather than knowingly have an autistic child.

    But, unlike Downs, autism is multifactorial. There are so many contributing factors that what we have so far are dozens of genetic variations that contribute to different aspects of development that may contribute to autism. But these genetic variations are also quite common in non-autistic people as well.

    I asked a doctor about a genetic test for autism. She is also a geneticist. She works in a clinic that offers pre-implantation genetic diagnosis to couples with known risks of having children with life threatening hereditary diseases. She thinks that a genetic test for autism is very unlikely because of its genetic complexity.

    My source is not blessed by god. Your geneticist openly states on his blog that he is using, “science in the service of the pro-life movement.” He is looking for worst case scenarios that support the idea of genetic testing and abortion for autistic fetuses so that he can argue against this on moral grounds. When you go looking for evidence to prove a point you tend to find it. It is much better to look for unbiased evidence in answer to your questions.

  11. msamericanpatriot April 12, 2011 at 10:51 #

    You want to know why he is biased. HIS OWN SON IS ON THE SPECTRUM!!

  12. sharon April 12, 2011 at 11:05 #

    @msamericanpatriot, my son is on the spectrum too. So what? Your mate is not a very clever geneticist even if he is channeling god. Sorry to be so blunt.

    I fear Mike there is no way to convince msamericanpatriot that Autism is a far more complicated genetic conundrum than Downs Syndrome.

  13. Mike Stanton April 12, 2011 at 12:15 #

    Ms American Patriot,

    my son is on the spectrum as well. Most of the people commenting here are either autistic themselves or have autistic children or both. We all have our own biases but try to set them aside and view the evidence as dispassionately as possible.

    In my time I have entertained the notions that MMR was responsible for at least a minority of autism cases, that the opioid excess theory of autism was true in some cases and that special diets and vitamin supplements were medically indicated for the treatment of autism. I was encouraged in these beliefs by a friend who is a scientist, father to an autistic child and a prominent member of the National Autistic Society here in the UK.

    Then I met doctors and scientists, some of whom had autistic children themselves, who rejected these notions. They introduced me to the wealth of research that persuaded me to rethink my ideas and reject these notions. It took me a long time. My bias was to support my friend. He is still my friend. But his theory of autism was wrong.

  14. David N. Andrews M. Ed., C. P. S. E. April 12, 2011 at 13:32 #

    msamericanpatriot:

    “You idiot.”

    You’re calling very intelligent people here idiots. Not a wise move.

    “Have you actually talked to a genetics person. I have. So I have PROOF to back up what I am saying.”

    Interesting, considering the next bit …

    “You don’t unless your one yourself.”

    So, you are not a geneticist but you have spoken to one so you know the truth; but if the person you were talking to is not him/herself a geneticist (using general terms here) they cannot know the truth. You claiming some special privilege here? Again, not a wise thing to do.

    Especially since the geneticist you’re talking to off-blog may well be wrong. Proof isn’t necessarily in the person one talks to: it is in the research results.

    “You want to know why he is biased. HIS OWN SON IS ON THE SPECTRUM!!”

    Stop shouting … it doesn’t help your case.

    I’m on the spectrum, as is my daughter … in fact, so is my daughter’s mother. And my daughter’s mother is a geneticist and molecular biologist. As well as being a psychologist (which I am, too).

    We read the research. We understand the research. Because we are trained scientists.

    “His work is blessed by God.”

    At risk of offending your beliefs, that is bullshit. As Sullivan said, that is an appeal to authority, and it is an egregious one, at that. If your geneticist friend is telling you that himself, he’s entering the world of the deluded. If it your impression, then you may wish to redefine some things in your world. Practising a religion is one thing, but using it as the basis for trying to justify unscientific thinking is nothing short of betraying your god. Think of it as taking your god’s name in vain.

    Sharon: “I fear Mike there is no way to convince msamericanpatriot that Autism is a far more complicated genetic conundrum than Downs Syndrome.”

    Mike, I’m with Sharon here (Hi, Sharon!). Looking at the commenter’s name itself tells a lot about how she thinks.

  15. msamericanpatriot April 12, 2011 at 13:55 #

    God told me he blesses my friend. Yes I can talk to God which is more than I can say for humanists like you which is what you sound like. Humanists HATE disabled people. ALL DISABLED PEOPLE. They are Fabian Socialist in nature and to a Fabian Socialist if you are not a productive citizen of society you should be DEAD. A famous Fabian Socialist is George Bernard Shaw. Humanists are IDIOTS in my book.

  16. msamericanpatriot April 12, 2011 at 13:59 #

    He is blessed by God because God told me so. I can speak to God which is more than I can say for humanists like you. Humanists are Fabian Socialist by nature and therefore HATE disabled people. They believe that if you are NOT productive members of society you should be dead. A famous Fabian Socialist is the playwright George Bernard Shaw. Humanists are Fabian Socialist by nature and by nature there for heartless and care for nothing more than trying to be what they are not to begin with which is God.

  17. David N. Andrews M. Ed., C. P. S. E. April 12, 2011 at 14:40 #

    Seems that we have someone here who has an assumption that she is right because her god tells her she is.

    I’m calling a troll alert.

    And this is just plain stupid:

    “Humanists HATE disabled people.”

    This I know to be utterly bullshit.

    “ALL DISABLED PEOPLE.”

    See previous comment.

    “They are Fabian Socialist in nature and to a Fabian Socialist if you are not a productive citizen of society you should be DEAD. A famous Fabian Socialist is George Bernard Shaw.”

    Also incorrect. Not all humanists are socialists of any sort. Some are conservative, some are liberal and some are anarchist.

    “They believe that if you are NOT productive members of society you should be dead.”

    That’s news to me, and I dare say would be news to any socialist – Fabian or otherwise – especially since the Fabian socialist movement in the UK was dedicated to getting the welfare state off the ground, so that people could get the support that they needed (which – under the previous conservative administrations – was very much the preserve of the rich, who did not give a rat’s arse about the disabled).

    Have to say, msamericanpatriot, you really are not very clever. You behave like someone who is a fanatic. You make America and Americans look ridiculous: thankfully, the Americans that I know and have good friendships with are nothing like you. They have brains and they use them to think with.

    “Humanists are IDIOTS in my book.”

    Much as it pains me to say this, maybe you are the ‘idiot’ here.

    Not happy to use that term, but since you are using it against others you cannot object to it being used against you. And – this bit I shall enjoy telling you – I know Satanists who are more intelligent and caring that you are. The impression that you give of what your god is like is an absolutely appalling one.

    Again, I’m calling troll alert.

    Sullivan? Kev?

  18. David N. Andrews M. Ed., C. P. S. E. April 12, 2011 at 14:56 #

    Just a wee bit of research about our “friend”, msamericanpatriot:

    “msamericanpatriot said:
    I am white and I will ONLY date white. Those who date outside of their race have NO self esteem or self worth. Even the Black Panthers hate interracial dating. Look what interracial marriage spawned. We have to put up with the Great Usurper until someone has the balls to remove the lying freak. So interracial dating is hated by both races. I dont plan to be come the next Nicole Simpson. She got what she deserved for her jungle fever.”

    http://www.mediaite.com/online/worse-than-originally-thought-audio-of-mel-gibsons-racist-rant-released/

    Not only stupid. Racist, too.

    Is she worthy of space on this blog?

  19. msamericanpatriot April 12, 2011 at 15:04 #

    My parents asked me NOT to date out of my race. Also a BLACK woman who I considered to have a grandmotherly influence on me asked me NOT to date out of my race either. She was one of the FIRST registered nurses in the state of South Carolina. Stupid NO. Realist yes. My favorite line from Gone With the Wind was spoken by Mammy when she said,”Like must be with like in order for their to be happiness.” Your forgetting that Obama hates whites and hates his white heritage. Obama and the Attorney General who are BOTH black NEVER EVER pressed charges on the Black Panthers for voter intimidation which was videotaped TWICE. They are as racist as you can get.

  20. David N. Andrews M. Ed., C. P. S. E. April 12, 2011 at 15:11 #

    “Your forgetting that Obama hates whites and hates his white heritage.”

    Now I know you’re talking complete bullshit!

    Again, for the third time of asking, troll alert!

    • Sullivan April 12, 2011 at 15:57 #

      Wow. Major troll action. Bye bye whoever you are.

  21. msamericanpatriot April 12, 2011 at 15:27 #

    http://www.stop-obama.org/?p=123
    http://www.factcheck.org/askfactcheck/did_obama_write_that_he_would_stand.html

    Read that. It is quotes from his AUTOBIOGRAPHY which states his hatred of whites. From the horses mouth you might say. Obama HATES white Christians.

  22. Julian Frost April 12, 2011 at 15:52 #

    Given how upset Obama was when Toot (the nickname for his white grandmother) died, I’d say you’re wrong about Obama hating whites. Also, those supposed “quotes” from his autobiography? Given the names of the websites, I’m guessing they’re distortions or misquotes. Finally, I agree with David N. Andrews: you’re being racist.
    Kev, Sullivan, I think it’s time to apply a dose of Troll-Be-Gone.

  23. David N. Andrews M. Ed., C. P. S. E. April 12, 2011 at 16:31 #

    Thank you, Julian and thank you too, Sullivan!

    I decided to check what this person was up to on various sites. Very unsavoury character.

    Hopefully too stupid to figure much else out… so, thanks!

  24. msamericanpatriot April 12, 2011 at 16:36 #

    I am back!! It takes more than that to lose me. Others have tried and FAILED. They even threatened to call the cops on me but never did. I love trolling. It is how I get my jollies here. I am a product of my environment and proud of it. Why did the news report that he never cared for his white grandmother when she was on her death bed from cancer? He could care less about her. He could have care less about the blatant voter intimidation when there was video proof of it. He hates white Christians.

    http://www.freerepublic.com/focus/f-news/2096744/posts

    http://obamaism.blogspot.com/
    http://www.freerepublic.com/focus/bloggers/2042057/posts

  25. Clay April 12, 2011 at 16:51 #

    msamericanpatriot said (on this thread on 9 Aug 2009):

    “To me I feel like a beast that NO man can love.”

    I’m sure your self-assessment is quite correct.

    (And I hope that comment wasn’t too subtle for you to understand, as you clearly misunderstood my last comment.)

  26. msamericanpatriot April 12, 2011 at 16:59 #

    Well things have changed in that part of my life. I have a friend who is helping me to change that. Yes a girlfriend who is helping me to find a boyfriend. That came after years of abuse at the hands of pyschotherapy. I do NOT do pyschotherapy anymore. Pyschotherapy MADE me this way as well as all the other professionals trained to work with people like me. My mom was NOT a refrigerator mom by a long shot.

    • Sullivan April 12, 2011 at 19:10 #

      msamericanpatriot,

      I wish you better times than you’ve had. At the same time, I am not going to keep this conversation going like this. I will not be approving further comments from you.

  27. Nightstorm April 12, 2011 at 22:42 #

    DAMNIT did I miss the fun? Crap. Lol Tea-Party troll….

    DEY SEE ME TROLLIN DEY HATIN’

  28. wayniac June 3, 2011 at 15:40 #

    How can a person, like my son, who can’t look people in the eyes or is uncomfterible with contact with strangers go into an interview and possibly get hired. That my friends is not a disadvantage, it is by all means a disabilty. He would have to depend on his mother and I for the rest of his life. A disadvantage would be that he was not qualified enough for the job due to the lack of education. My son has a MENSA rated IQ of 140. He is bright, and picks information up like a wet-vac. I truley believe he will go to college, although his dream of West Point may never be a reality, he will graduate from school. With all those brains and hardly any ability of social interaction supposed to care for themselves. Anyone who believes this tool about Asperger’s being a disadvantage should truley study the definitions of said words. Look into the history of this syndrome. Aspie’s are diffenitly higher in brain functioning but not to well off when it comes to motor skills os socializing. If you would like to discuss this more, please do your homework on the issue before you comment or blog. Mr. Shafer, you my friend are nothing but a tool who seems to just loves to hear himself talk.

  29. McD June 7, 2011 at 00:24 #

    I was traveling and I missed the fun, oh dear.

    my son can’t pass simple tests set up for him at this point, but I can.

  30. bodey041 July 10, 2011 at 22:07 #

    msamericanpatriot is the type of advocate who gives advocates a bad name. She is a zealot who believes only she and those who agree with her have a right to voice their opinions.

  31. Kim Hunter July 19, 2011 at 01:17 #

    I can’t get on disability where I live, which is in Canada. It’s not for lack of trying. I actually have been trying for the past several years; seem to keep falling through some loophole or another.

  32. Killman August 19, 2011 at 19:37 #

    I have severe Aspergers and I am currently getting SSI.

  33. Saraquill August 19, 2011 at 22:29 #

    Hmph. Does Schafer bother to do any research? I too have Asperger’s and received benefits, though educational rather than monetary. A lack of I.E.P. (individual education plan) would have made my public school life much harder than it already was.

    As for his, “Lack of good communication skills is a definite disadvantage, but not necessarily a disability” comment, it makes me doubt that he has spent much time with people on the spectrum.

  34. David N. Andrews M. Ed., C. P. S. E. August 22, 2011 at 04:08 #

    Saraquill: “Does Schafer bother to do any research?”

    No. He’s a dozey old git who says stuff he can’t back up and thinks he’s doing the world a favour. He’s not. He’s pathetic. And I for one wish he’d just give it a bloody rest. He talks out of his arse. But he never wipes up the mess.

  35. Tyler February 15, 2012 at 02:59 #

    Not everyone who believes in Neuro Diversity have Aspergers some have the so called “low functioning” Autism, and some aren’t Autistic at all but believe in actually listening to Autistic people. So whenever someone whos Autistic can talk they are somehow not Autistic anymore, anyone who is every successful in life and has Autism suddenly doesn’t have Autism. That convienent for the view of “Autism Speaks” and Age of Autism that Autistic people are worthless mistakes. We’re not. Also kids are not their parents property to do what they will with. Also I think a lot more parents would be more accepting of their Autistic children if the stigma wasn’t so strong, if the first time they try to read about Autism they see videos of parents crying whining and complaining and talking of suicide/killing their Autistic child. They would be better off not waiting for some cure that is not coming. I am not as “anti-cure” as some. I think a real cure simply isn’t possible but that won’t stop total charlatans from taking peoples money. Should Autistic people be taught how to “fit in” sure but society should be more tolerant of difference, difference is not always bad. Autism itself can’t be blamed for people being bullied and picked on. Neurological conditions can’t explain how other people act towards you.

  36. Bstanway March 29, 2012 at 13:35 #

    In my personal opinion and many others I believe that most if not all of that comment is an erroneous statement. “Dont bite the hand that feeds you” If it werent for Aspergers this comment wouldn’t even be here. For instance Bill Gates or many developers of the internet have aspergers syndrome if it weren’t for them we would not even be on this website at this present time. People with Aspergers have the same rights as anyone else. They deserve recignition. These people are profoundly inteligent and achieve great things the only thing that is stopping them is neurotypical jacknapeses. To be honest with you many Neurotypical people are great with people like ourselves. However many are imperious or supercilious and dont see things from a range of vector points. People should see people with autism or aspergers for who they are not the person with the “thing” they are people and aspergers makes them who they are. They have achieved many great things that many people disregard. People tend to go by conjecture or knowlage from a book rather that engaging the person themselves. Some of the greatest minds in the universe were on the asperger spectrum. For example Albert Einstien, Isaac Newton and many more. How would I know because I have aspergers and I am still fighting for my rights I am still fighting to be heard. I am profoundly intelligent I have a musical gift, my knowlage of physics is degree level I am developing theories upon the gravitational field and infinity^3. All I want to do is live my life be happy and achuieve greatly in the world of science I want to develop theories and discover the unanswered questions of the universe. Thank you Bstanway

  37. Stephanie K May 3, 2012 at 22:33 #

    I have read some of the comments about Autism and/or Asperger’s. I need to tell you what it’s like living the life of one of these special people. I am a mother of an 18 yr old daughter who was diagnosed with Asperger’s Nov. 2011. I’ve ALWAYS known something was different with ‘K’ since she was 1 yr old. Her development was delayed in comparison to her older sister. And I was her “translator” as our family members called me when she could talk. She couldn’t fit in socially with other kids her own age & seemed to prefer playing with younger children if she played with others at all. She mostly preferred to be in her own world & be self entertaining. So, I put her in a pre-school to try to encourage her to become a little more social. She couldn’t follow instructions & was constantly being punished in time out for not putting away her toys or books when it was carpet time. She was stuck in her own world. Not one single time did she ever get to have recess or enjoy any treats with the other children. When I was told about her misbehaving, I learned I was paying them to keep her in a time out chair the entire day. I was beyond angry! She was a good child; never misbehaving. Then they told me they thought she was retarded or deaf & took it upon themselves to call in someone to evaluate her. Believe it or not, this was a blessing in a terrible disguise for us. The wonderful woman informed me she was the speech therapist for the local head start program & declared that K had a speech impediment, but she thought she might have some autism tendencies & she could help us get her evaluated. That program was Heaven sent. She excelled & learned so much & blossomed under their care. She was never bullied or judged or anything by ANYBODY. She was diagnosed as having autistic tendencies. When she entered the public school system though, hell on earth for her began. Her diagnosis wasn’t enough to warrant any help & didn’t follow her in her records. And no matter how many meetings or telling teachers about her, nothing would change & every single educational year was a nightmare! My daughter is “high functioning”; very intelligent & talented. So, she kept falling between the cracks. She actually had two teachers who bullied her during two separate years of grammar school. One told her she’d never make friends the way she acts. She has been threatened, she has been bullied, ostracized, laughed at, cruelly made fun of just to name a few things. She’s never spent the night with or had an overnight friend. She’s never had a best friend. She tells me I’m her best friend. And that’s ok with me, but I know deep in her heart she wants to be like regular teenagers & have a friend; at least one. She doesn’t get invited to parties. Nobody wants the freak there. And what makes her so horribly freakish? Because she can’t handle loud noises. She laughs at & says inappropriate things. She has anxiety attacks & fights depression all the time. Do you have any idea how it feels to be told CONSTANTLY that EVERYTHING about you is wrong & you’ll never fit into society or be normal & understand what that means? We prayed so hard for her current Senior year; that she would have a few joyous moments before it’s all over. Her diagnosis of Asperger’s was the key. It has opened up for her. I’m not just talking about services, but understanding of herself. It’s helped her relationship with her slightly older sister, relatives, school officials & teachers, as well as church members. I’ve even learned some skills on how to deal with her “meltdowns”. Yes, she knows she’s having these tantrums, but says she can’t do anything to stop it. We have code words with the teachers now so they will allow her to leave the room without explanation & go to an agreed place to cool off. And her anxiety medication is in the school office when she needs it. She has a new counselor who works hand in hand with us. My daughter was suicidal before her diagnosis. She felt completely & utterly hopeless & ‘a waste of skin’. Can you imagine feeling that way? Now that you know what is “wrong” with her, let me tell you what is right. She is one of the most loving people with the biggest heart ever that I’ve had the privilege to know. I’m not saying any of this out of bias. She gives & gives to a fault. She is constantly sympathizing with others which is unusual for Aspergers. She finds herself drawn to others who are in need & always wants to help them. She has an extreme photographic memory. Loves to play Jeopardy with her Dad. Her greatest happiness comes from making others happy. And in her blessed naivety, can not understand why everyone can’t get along. She’s very talented with writing & drawing. She wants to work for Pixar some day as an animator. She has dreams, feelings, & goals. But she is working on being realistic & knows that she has to work at short term goals a little at a time & she may or may not get to live her ultimate dream. She is currently working on her Senior project of creating a video for at least her school that would bring awareness to Asperger’s & maybe help those who come after her avoid the hurt & shame she feels. And to know that different isn’t necessarily wrong; just different & everybody has something to offer this world. She may not ever be able to hold a job working with the public or extreme stressful situations, but she makes a difference everyday just by being in this world. Where would this world be without the likes of Albert Einstein, Mozart & Beethoven, Henry Ford, Isaac Newton to name a few. If you’re reading this, then you’d like to thank Bill Gates & Steve Jobs. If you like a good story or movie, then maybe you’d like Alfred Hitchcock or Dan Aykroyd. Like the King of Pop, Michael Jackson? How about Jane Austin if you’re a fan of literature? I’m almost certain you have a Facebook page. So, thanks to Mark Zuckerberg. All of these people had/have Asperger’s. Look at the outstanding contributions these people made to society. Now imagine if someone had already discovered Asperger’s & could’ve helped them understand themselves better or trained society. What could they have offered then without all the trials they struggled with? People aren’t important because they discovered the law of gravity or can write computer code or a beautiful symphonies. They’re important because they are, period! And this world would be a better place if we were all as special & had some of their disabilities! Title them what you want, but don’t ever discredit them or their needs.

  38. Lara Lohne October 23, 2012 at 10:55 #

    What do you do when you’re an adult in your late 30s (actually turning 40 in December) suspect that you may fall somewhere on the spectrum because there are too many similarities between you and your 5 year old son who has autism and too many things in life are overwhelming and cause debilitating anxiety, to the point that this person is no longer able to perform their job, which fortunately is a work from home position because leaving the house is really hard to do. Yet there aren’t any professionals that will accept our state medicaid that are qualified or have experience to evaluate an adult for ASD? Trying to get SSI, but not able to get a diagnosis, just a psychiatrist saying, “Possibly has bi-polar disorder, agoraphobia, anxiety and dissociative personality disorder” any of which, with a proper diagnosis would qualify a person for SSI.

    Can’t get a proper evaluation without having the support and benefits to cover it, but can’t get the benefits and support without the evaluation. That is the worst catch-22 ever.

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  1. The Diagnosis Formerly Known as Asperger's » Gocnhin Archive - October 16, 2012

    […] with the usual autism factions. Some who reject it are motivated by inclusion and solidarity. Others appear to do so for reasons of exclusion and hierarchy. Needless to say, these groups aren’t […]

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