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.
Left Brain Right Brain 
There are many errors in the comment, but let me just take one. The terms “high functioning” and “low functioning” autism are not “street jargon.”
You can disagree with their usage, their existence and their definitions, but they are routinely used in the scientific literature, and their formal meaning is well known.
I didn’t realize Mr. Schafer was this ignorant, on top of everything else.
I don’t like the terms, but they are much more than “street jargon”. As Joseph notes, they are widely used (and accepted) in the literature.
Yes, the terms “high functioning” and “low functioning” are widely (though not universally) used in the autism literature. But these terms are defined in very inconsistent ways. There is no agreement on what exactly these terms mean.
Similarly there is no agreement in the autism literature about whether or how to distinguish Asperger syndrome from autism.
I have a nice fever today,so I am able to be more lucid than I have been in weeks.Last week,I was all nonverbal and head banging.
It was my post over at Age of Autism,that inspired Jake Crosby’s original piece.It was taken from some emails I had written to Kim Stigliano.I wish Kim had shown me the final piece before she ran it. There was stuff in there I would not have published.Especially the “not disabled” statement that set Mr.Crosby off.That said,it is fairly obvious Jake has both led somewhat of a sheltered life,and was unaware of both the conditions that can exist with autism,and the outright hatred the neurodiversity movement has created amoung families of more impaired autistics towards everybody with Asperger’s.That many in neurodiversity cannot understand why this is is part of the problem.There are a lot of assholes on all sides of this issue,but neurodiversity has a serious image and public relations problem.
The “can’t we all just get along” viewpoint promoted by John Elder Robinson
http://www.psychologytoday.com/blog/my-life-aspergers/200907/why-cant-we-all-get-along
http://autismgadfly.blogspot.com/2009/07/john-elder-robison-gives-his-take-on.html
has little in common with the way those who are on the other side see neurodiversity.See my comments at both the AoA and Gadfly blog posts.
While he may not say thing in the most polite, and tactful way,a lot of us are in 100% agreement with Harold Doherty,especially his belief that neurodiversity,and Ari Ne’eman as a particular example, claims to speak for everybody on the spectrum.While this may not be Mr.Ne’eman’s intention,this is the impression he,and a lot of those in neurodiversity,give.They imply all autism is Asperger’s.
While he probably isn’t in person,a lot of people see people like Ne’eman,as arrogant snobs.As I have said over at Age of Autism,to parents who defend their Aspergerian children,neurodiversity has engendered a great deal of animosity towards those with Asperger’s from families of more disabled autistics,and lbrb is among the big reasons why.While you don’t quite stoop to the level of hate that the likes of Prometheus,ans Autistic Bitch From Hell do,it can get pretty mean spirited around here.Moderating comments would help.
Those of us who have both autism,and what ND types like to cutely call “comorbid conditions” see all of the neurodiverse Aspergerians ,or their sympathetic fellow travelers,doing much of the research on autism,on the one hand.And on the other we see all these questionable studies like the ones on autism and bowel disease,and some of us can’t help but wonder if there isn’t some grand conspiracy to redefine autism,by eliminating symptoms,so that only the highest functioning aspies remain on the spectrum.
As much as many of us would like it to go away,if there is to be a neurodiversity movement,Robinson’s blog post presents the ideal model of how you should conduct yourself.
Mr Kulp,
I appreciate you taking the time to comment.
I would encourage you to read a bit more of this and other blogs. First, the idea that AoA is a place for those with “more disabled” autistics is not accurate. Also, the idea that moderating comments can lead to a nicer tone for the blog…well…I would suggest that AoA is a prime example of a heavily moderated blog with a very harsh tone.
Roger said:
“They imply all autism is Asperger’s.”
We don’t think that, don’t imply it, and don’t act as though that were the case. What IS true is that all Asperger’s is autism. Asperger’s is only one sub-set of autism, and there are others.
Roger, if you are interested in the connection between fever and severity of some symptoms, you might want to check out my blog post on what I see as the nitric oxide connection.
http://daedalus2u.blogspot.com/2008/01/resolution-of-asd-symptoms-with-fever.html
I am endowed with Asperger’s syndrome.
**facepalm**
… do I really need to go through all the ways in which Lenny Schafer is a complete idiot? really?
in terms of the DSM, the only way in which Asperger’s differs from Autistic disorder is that there’s lesser checkmarks, for the same criteria I might add, and little to no speech delay. I know this because I’ve read the DSM.
The differences between “high functioning” autism and “low functioning” autism varies depending on who you ask. Officially though, they are not even a part of the DSM, although medical literature does refer to the terms as a means of description.
And if I remember correctly, wasn’t the new DSM going to merge everything into a single diagnosis of Autism Spectrum Disorder, so that Autism disorder and Asperger’s will be considered the same thing?
Also, just because someone’s social assistance program in one area doesn’t currently recognize something as a disability doesn’t mean that it’s not a disability. and Asperger’s DEFINITELY can be a disability.
And oh yes, there is such a thing as high-sight blindness. It’s not called that though; it’s called being legally blind.
Now, I will excuse myself to a private location to blurt out huge strings of not very polite language.
An added irony: Sacramento FEAT is working to get recognition and services for Asperger syndrome and PDD-NOS as recognized disabilities. Sacramento FEAT being, of course, an organization that Mr. Schafer has been very involved with. So it is even more strange to this reader that Mr. Schafer would use the litmus test of “they don’t get services” to determine that AS is not a disability.
and here is a comment for Mr. Kulp regarding the term co-morbid.
As an ND advocate, the first time I had ever seen co-morbid mentioned was in Jenny McCarthy’s Mother Warriors book. I’m used to referring to dual diagnosis and other medical diagnosis. I only use co-morbid when responding to someone who has used the term. I have rarely seen it being used on the ND side.
so. Please be careful when generalizing a very large group of people.
Let me first say, I can’t really say I am anti-cure or pro-cure. First, I have a hard time being against something that doesn’t exist. More importantly, I can’t say one way or the other because I am not autistic. It isn’t my place to tell autistics whether they should or should not seek a cure.
As already noted, the idea of conditions being “comorbid” with autism is very important to the discussion of a cure. If a person says, “I am against curing autism”, that is very different from saying, “I am against curing or alleviating all conditions an autistic has”.
To use an example, if a person says, “I am against a cure for autism” it doesn’t mean “I am against curing epilepsy or GI problems in an autistic”. Very different statements.
Most arguments I have seen that include variations on the phrase, “Those ND’s think….” either confuse or purposely misrepresent the above difference.
“Roger said:
“They imply all autism is Asperger’s.”
We don’t think that, don’t imply it, and don’t act as though that were the case. What IS true is that all Asperger’s is autism. Asperger’s is only one sub-set of autism, and there are others.”
I think what Roger means is that people will see the ND advocates and assume that all autistic people are like the ND advocates.
He does have a point – but not the one he thinks he does – lack of public understanding about autism is a frequently mentioned theme in both the academic and biographical literature. Public misunderstanding of autism has been in evidence throughout the last few decades, especially prevalant after Rainman and the Curious Incident, and public understanding follows from the public image, yet Roger will somehow fail to mention this and will find some way to blame public ignorance on the ND advocates.
I think he means ‘imply’ in the “necessary consequence” definition, although the “necessary consequence” would be the fault of the general public, not the ND movement.
As an aside he mentions:
“Those of us who have both autism,and what ND types like to cutely call “comorbid conditions””
I would like to point out that “co-morbid” is a valid clinical term, and also would like to point out that many of the extra traits he mentions are not part of the diagnostic criteria of autism. There are many on all sides who argue that autism should be expanded to include many of the traits that are co-morbid in autism, but as of this current moment, any trait that is not in the diagnostic criteria is a comorbidity by clinical definition.
and:
“While he may not say thing in the most polite, and tactful way,a lot of us are in 100% agreement with Harold Doherty,especially his belief that neurodiversity,and Ari Ne’eman as a particular example, claims to speak for everybody on the spectrum.”
Intrestingly enough, one of the main ideas about ND is that autism is a natural variation, with autistics to be respected for being autistic, rather than devalued as intrinsically defective.
It would be rather hard to talk about autism if one didn’t talk about autism. This appears to sail over the heads of people like Harold, who instead bleats on asserting (incorrectly and irrelevantly) that only parents have legal responsibility for their children.
Although there are anti-cure and anti-treatment (even Harold has mixed these up in the past) people within the ND movement, it does not follow that the ND movement is against any and all therapies, especially not given how many pro-therapy and pro-services self-identified pro-ND’s there actually are out there.
People need to learn that speaking about all people with autism is not equivilant to speaking for all people with autism – at least not in the legal sense that Harold claims.
Whew! Rather long, and I didn’t even point out that the ADA considers the impairment to be the disability, not the condition. Oh wait….
“As already noted, the idea of conditions being “comorbid” with autism is very important to the discussion of a cure. If a person says, “I am against curing autism”, that is very different from saying, “I am against curing or alleviating all conditions an autistic has”.
Indeed, the ND movement (at least here in the UK) contains multiple people who advocate for services and therapies at the local and national level, and includes many therapists and health professionals, as well as support workers and HCA’s.
“Most arguments I have seen that include variations on the phrase, “Those ND’s think….” either confuse or purposely misrepresent the above difference.”
Indeed, whereas I use the phrase “ND’s think…”, it’s always in reaction to a generalising statement, and is usually shorthand for “Some people who self-identify as ND may argue the opposite”
ND as an identity is a claim that one agrees with the concept of ND. One thing that some anti-ND people do is to claim that something someone who identifies as ND said therefore makes it an ND arguement, when it could just have easily be derived from that persons anti-psychiatry tendancies.
Indeed, I’ve seen very little evidence that those in what might be called the ‘anti-ND movement’ have any effective knowledge of who is in the ND movement and what we all do for a living. Even to the point where I’ve seen pro-ND autism lecturers and autism charity directors being accused of lacking knowledge.
In Germany Asperger’s is classified as a severe disability.
Disability is rated in percetages ranging from 30% to 100%.
People who are over 50% disabled are considered severely disabled and are entitled to benefits.
Asperger Syndrome is classified between 50% and 80%, (the exact percentage is individually assessed), whereas Kanner Syndrome is classified as 100% disabled.
(I don’t know how Rett’s and PPD-NOS are classified.)
I should be grateful for Schafer’s complete asshattery though, according to his definition I have Kanner Syndrome, because I’m entitled to social services, disability benefits, a caregiver, speech therapy and so on.
I will remember that next time Doherty feels like telling me I’m not autistic enough to speak for autism.
I have a hard time accepting that some person has an ideal model of how I should conduct myself (much less the whole neuro uh, sympathetic community) listed on their blog. Politicians, governments, and religions have been trying to set down these policies for thousands of years, and our civilization still has a problem properly caring for the disadvantaged (ahem.) and a whole lot more.
Wow, Kowalski, that sounds like a pretty fair system in Germany. I wish we had that sort of deal here. Here, the Dx has to be made before you turn 22, or you’re just SOL. (Shit outta luck). Also called “Catch 22”. 😉
It sounds like Germany’s system is based on performance skill domains, or at least something similar.
Seems much fairer than the more usual binary system of disability as it can recognise the effect of compund and complex impairments that may not otherwise be picked up by a diagnosis dependant system.
Thank you for bringing Shafer’s remark to our attention. I haven’t read anything else that Mr. Shafer has written but in this particular comment he is spectacularly wrong.
Our son has Asperger’s and was approved for SSI on the first try and in a very short time after his application. Approval for Med. Assist followed a day or two later.
Our son is very intelligent and artistically gifted, yet he couldn’t handle the stress, the smells, the transitions of a “college in high school” drawing class. He dropped out after spending most of the first two classes sobbing in the Special Services office.
If we must engage in the who’s worse off argument then let me say that our son would be a lot happier sitting in a wheel chair in a college classroom than having an Invisible disability that leaves him friendless and without the sympathy and understanding someone with an obvious disability garners and deserves.
The obstacles that people with physical disabilites face have mostly been eliminated by ramps, elevators and other accommodations that are required by law. There are no legal requirements for colleges to remove the barriers that students with Asperger’s, ADD/ADD and other invisible disabilities face except to “have” a special services department, which is often no more than some letters on an office door.
I kinda laugh at the comment that AS folks can’t apply for SSI. AHAHAHAHAHA really now? I got benifits first try. OH LULZ SHAFFIER
I lol at him is such an idiot
Bill needs to get his head out of his ass. Next month at 39 years of age I will learn whether or not I am blessed with this nightmare. Yes I call it a nightmare. If there was a cure for it, I would be knocking people over as if I am a tackle for my beloved New England Patriots. It is a disability no more and no less. To me I feel like a beast that NO man can love. When I tell them why I cant hold down a job they laugh. I am surprised I havent turned into that guy that walked into that gym in Pennyslvaina. The last three shrinks I had treated me more like a child that a 30 something adult. How would you like to sit there and have a so called “professonal” tell you point blank to your face things like who you can and cant talk to on line, what you can and cant have for dreams like marriage or career wise, and for the grand finalie that you are INCAPIBLE of love and who you can and cant have relationships with. I have been through twenty five years of shrinks and social workers including a stay in a loony bin at 15. I feel that these quacks have done more harm than good in my life. I didnt like the day when the shrink told me point blank to my face with my mother there that I didnt have the social skills for someone my age. Why couldnt they just have told my mom alone? Thoes words still ring in my head all these years later and still sting like hell. I am on social security to the tune of about $450 a month. My state’s vocational rehabilitaiton, I live in North Carolina, told me to file for it. They got frustrated with me because I was too DAMN high functioning for them. They were used to working with what I would call human robots. People alot lower functioning in the head than me which are peferct for janitor and workshop type of jobs.I feel like Dickens Oliver Twist when he is out side of the bakery looking in at all the pastries, cakes and breads wishing in his heart of hearts he could have them but knowing he cant. Having this is no day at the park. I have a neurotypical female cousin who I consider “wealthy”. She is married, gainfully employed, has a child and pets. She is surrounded by love and acceptance which is the type of wealthy I want and she knows it. She often asks me why wont they let me be wealthy too and I have to tell her I dont know. I remember her asking me New Years Day this year to promise to be happy but I couldnt and be true to myself. My favorite Disney movie is Beauty and the Beast. There is a line in there where the Beast is placing the glass dome back over the enchanted red rose. He says, “No one can love a beast.” It might as well have been me saying it.
MsAmericanPatriot,
there is a lot in your comment to respond to. Howver, I find myself having trouble getting past the “human robot” comment.
I hope you can find some peace.
When I had my one paying job about 10 years ago Voc Rehab was used to working with those who basically didnt question things. They just went to work, did their job and went home.Robots dont question their programing and these people didnt have the capacity to question what was going on around them. I questioned how I was treated and next thing I know I am called on the phone by the head of the job coaches and royally chewed out by them. Also voc rehab never really conducted themselves in a professonal manner if you ask me. They were as shocked as I was when we learned I was fired from the paying job they had gotten me. It was a job as an adminstrative assistant for a non profit organization that found respite and life skills instructors for families who have developmentally disabled members. I am consider to also be high functioning developmentally disabled. My first boss was a dream. She had a degree in Special Education which my mom and I both think helped her to connect to me better. Mid way through the year I worked for them, they split into two enities. I wasnt allowed to choose which one I wanted to go with because if I did it would have been with her in a heartbeat. She seemed to bend over backwards for me. It was at this point I had to take three medications to hold down this job (ridalin, prozac, and buspar). I was placed in a room which I shared with the filing cabinets and was next door to the office manager and the one whoes job it was to keep track of the files. Instead of doing the job they were paid to do, thoes two were always talking about personal stuff on the company dime. I am of the mind set that if employees want to talk about personal stuff do it off site on their lunch hour or exchange phone numbers and do it on their dime. Files would often be absent so the filing would never be completed and I would be the one blamed for the back up and not the one that should have been blamed. My firing should have been known of by Voc Rehab and the job coaches but with me having a different coach each week it was impossible to have a decent repore with any of them. Mom and I figured out later that the reason they were able to get me that job was that the coaches had someone on the inside more or less. One of their former employees was working at this non profit. We then had to start the process of job searching all over again. The job coach agency always seemed to drop the ball if you ask me. They would have papers for me to sign, then apparently forget or find some later that they needed me to sign when I was originally there and expect me to rearrange my schedual to cover for them. There was one time this had happend and I already had plans for that day that I had made WEEKS in advance. I told them I was not changing my plans to cover for them and Mom stood beside me on my decision. Then there was the time that they made an appointment with me and I had to wait an HOUR before anyone there helped me. Finally we had a conversation with my voc rehab councilor who suggested I use the public transportation for the disabled. Mom put her foot down and said that I drive. I do and did drive myself to work when I had the job. Then the concilor said in a blazay tone to file for government disability which I did.
So, according to Lenny Schafer disability is defined by legislation.
So in that case, in places where legislation is set locally, someone who’s disabled in one state could walk across a border and suddenly not be disabled.
What a fruit cake.
I love the whole ND movement is “high functioning” that I keep reading. because the average person would not find my either Classic Autism or PDD-NOS (depends on who you talk to – his interactions w/ adults make classic autism debatable) nonverbal son to be “high functioning.” While he is quite a joy and I am sure much easier to take care of than some children, he still is not able to dress himself, is not potty trained, doesn’t talk, etc, etc. And he got SSI the first try (though he is not Asperger’s).
Far as deleted comments, I’ve been trying to post evidence that Paul offit would have had to share whatever money was received on the Rotateq sale.
David,
have you seen comments deleted? I haven’t deleted anything other than one spam comment about Jennifer Lopez lately (and that because about 10 identical messages came through right afterwards).
If you have problems, you can send me an email at sullivansjourney@gmail.com and I can post it for you.
I have been deleting spam comments as well, but I have seen nothing from David in the spam queue.
These comments were to Age of Autism, in response to their Feb “Voting Himself Rich” hatchet job. As far as I know, the comments which have not appeared were never allowed up at all, so not “deleted” per se. Apparently, Blaxill, Olmstead et. al. are unwilling to allow further discussion of the likelihood that their claim about Offit’s personal wealth is based on a false assumption (ie, only one person in CHoP’s entire staff had a valid claim to some of the inventor’s share.) Not directly relevant to what is under discussion here, but good indicator of AoA’s peculiar priorities.
Thanks for clarifying that one, David!
I was worried. I’ve got some spam traps in place and I was worried they deleted your comments (or that I wasn’t being careful when I was deleting scads of spam).
Blaxill and Olmsted went to Pennsylvania (at least virtually) and didn’t go to the source. Where I have heard that story before? I won’t be surprised when they are shown to be wrong. Again.
David N. Brown,
I am somewhat boggled by the unfounded assertion that Dr. Offit got the entire share of the inventor’s royalties paid to CHOP. They seem to think that Dr. Plotkin and Dr. Clark were not with CHOP, but only with the Wistar Institute.
Here. Let’s do their homework for them. Feel free to chip in what you can find, easily accessible, on the net.
Let’s see, in 2007, CHOP gave a gold medal to all three, Offit, Plotkin and Clark:
From the same page, CHOP considers it an achievement that all three invented the vaccine:
The Wistar Institute notes that all three, Clar, Offit and Plotkin are “currently on faculty” at CHOP:
The press release from CHOP about the vaccine
Somehow, Mr. Olmsted and Mr. Blaxill got it in their mind that Dr. Offit was at CHOP and Dr’s Plotkin and Clark were at Wistar. They don’t seem to understand the idea of holding adjunct professorships.
But, in the end, Dr’s Offit, Plotkin and Clark invented a vaccine prevents a disease that kills thousands of people a day, worldwide. How much is that worth?
With luck, edits are being made on “Mercury Rising” right now. I still expect them to put a calculation in. If they have integrity, they will recalculate (and likely still be wrong).
I wasn’t even aware Clark was on CHOP. I have identified four other current CHOP staff who would seem to have a plausible claim to a portion of the share, based on the fact that they coauthored rotavirus papers with Offit. I have sent an inquiry letter to Paul Offit on this.
If AoA won’t even post my corrections, I don’t expect them to recant anything. Even if they do, citations are already all over the web, which frequently make claims even Blaxill and Olmstead deny (eg. that Offit voted for “his” vaccine and still collects royalties on Rotateq). What needs to be done is to publicize the fallacies of their story even more widely than the original story.
David N. Brown,
it is unfortunate, but most of the time the royalties go only to the named inventors on the patent. Even though other people may have had a hand in developing the vaccine, even been coauthors on papers, they are unlikely to be given a percentage share of the royalty payment.
Dr. Clark and Plotkin, on the other hand, are clearly in line to share in any royalty. Mr. Blaxill was just plain wrong when he claimed otherwise.
Since it can be taken as a given AoA won’t allow it up, here’s my latest post correcting their attack on Offit:
Correction to Mark Blaxill:
I have just determined that Stanley Plotkin and H. Fred Clark are both CHOP faculty (or were during work on Rotateq). My original conclusion, that they and Offit were entitled to equal shares of the inventor’s share, stands. I am making ongoing inquiries into the possibility of additional payments to coworkers and lab peons.
I have a statement from Dr. Offit on the exact amount received, but am waiting for his approval to post it generally. From what he has said, the share was split three ways. It surprises me that there weren’t more claimants. I am inclined to blame the nature of patent laws, which all too likely are more representative of the days of Edison and the Wright Brothers than of modern lab work. I still suspect that, under CHOP’s most current policies (which were cited by AoA for their figures), many more people could have made claims.
Although we know Asperger`s and Kanner`s descriptions of Asperger`s syndrome and autism, what is the history of the terms
1. High functioning autism
2. Low functioning autism.
Who introduced these terms?
I don’t think it’s ideal to take those terms personally.. I would imagine the author refers to themselves specifically when using those terms. I’m high-functioning, as in, I can tie my shoes, I can ride the bus, I can wash myself and I can make a phone call. I also have all basic and fine motor functions, with handwriting to match.
It’s kind of funny, but things like ‘exchange emotional ideas’, ‘apologize even when you aren’t sorry’, and ‘play hard to get’ aren’t even part of the ideals of a description of function[ing].
I understand the term, but as a person with HFA+AS, I would almost rather not be able to tie my shoes. Yeah, I could give that up for the disability check. Then I could sit in my home all day and watch the office. I know it sounds like I’m just lazy, but you have no idea what my quality of life is like because of this definition of ‘function’.
Reguarding the comment about Aspergers not being a disability. The author is totally ignorant to what Aspergers is and what it affects. My daughter is 24 years old and wants to be independent, but due to her aspergers she can’t. She is making progress and by the time she is in her 30’s or 40’s hopefully she will be able to be on her own. We have applied for disablility. If something happened to us, she could be in the streets without it.
Someday I believe that we will have more definite answers for the whole autism spectrum, but until then- why abuse the people and their families that are suffering through this hardship. Remember the people with thyroid disease, who were once but in insane ayslums before the cause and proper treatment was understood. Get involved with an Austism group and learn about aspergers first hand before you speak on the subject again please. I am sure that you would change your opinon with some first hand knowledge of the subject.
Vickie DONT hold your breath there. I am 39 and I was diagnosed as an Aspie Thursday 9/17. I believe that now my chances of finding a boyfriend that meet my basic standards is ruin and no I will not lower them. They are as low as they can go. Luckily you caught it early. I wished me and my parents did so I didnt go through half the things I went through in my lifetime. Good lucky with getting disability. I took me four attempts with one of the being a court appearance to get mine and it is NOT enough to live alone on. I get $447.39 USD a month.
I came across your website in my quest for information on Asperger Syndrome, and I thought that you might be interested in hearing a little bit about a collection of articles on the same topic that Education.com published recently in partnership with Autism Society. We worked with Dr. Brenda Smith Myles, Chief of Programs at the Autism Society, to bring together some of the foremost experts on Asperger Syndrome. We invited experts to write original articles for parents on understanding and thriving with Asperger Syndrome.
See: http://www.education.com/special-edition/aspergers/
We are very proud of the outcome. We have included over thirty articles addressing parent’s most pressing questions. We are always seeking to add content to the page. If you, or anyone you know, would like to suggest articles for the Special Edition, we would be gladly consider adding content. All articles would include links back to your site. Also, your web audience may be interested in this information, as well. Links to the information are welcome!
If you have any questions, please do not hesitate to ask!
Sincerely,
Laura Compian, Ph.D.
Technically, disabilities are defined by their symptom sets. The individual symptoms may vary in their severity (thus high functioning vs low functioning), but it is the SET of symptoms which indicate the disability (autism vs aspergers). Many people with these disorders have widely varying IQs. Higher IQ indicates a higher ability to cope with disability. In my case, my perseverance on systems analysis allows me to function rather well. But despite my high functioning aspergers, I still struggle with many of the same issues as any person with severe autism. Things that are automatic for “neurotypical” people, even neurotypical babies, only come to me with a great deal of effort. The high functioning aspect comes from the fact that I have a wide range of coping mechanisms for dealing with these issues so that I can almost pass for normal (by hiding the effort it takes and means that i use to achieve the same results as a normal person). This is why some people call the disorder a “difference” rather than a disability. But regardless of how one labels it, the autie/aspie way of coping is still by definition a disability. If a person has prosthetic legs or hearing aids, does this mean they are somehow not disabled?
Right on, Melanie!
Haha… Not that this is the main focus here I know, but, erm, in his examples he writes as if he hasn’t heard of partial deafness or partial blindness, or the different types of hearing and visual disabilities such as colourblindness… So, ya, you can have what might be seen as “high-functioning blindness” if you wish to call it that 😛
No one has or can define ‘autism’ least of all child psychiatrists of the American Psychological Association who are given the task of publishing the new DSM-V edition. Anyone can and will define their own concept of what ‘high’ functioning and ‘low’ functioning or ‘Asperger’ syndrome is or is not. I share Leo Kanner’s view on what true ‘autism’ is and is not.
In the early 1960’s Leo Kanner joined Van Krevelan in vigorously objecting to the ‘abuse of the diagnosis of autism’ that ‘threatens to become a fashion’:
“While the majority of the Europeans were satisfied with a sharp delineation of infantile autism as an illness sui generis, there was a tendency in this country to view it as a developmental anomaly ascribed exclusively to maternal emotional determinants. Moreover, it became a habit to dilute the original concept of infantile autism by diagnosing it in many disparate conditions which show one or another isolated symptom found as a part feature of the overall syndrome. Almost overnight, the country seemed to be populated by a multitude of autistic children, and somehow this trend became noticeable overseas as well. Mentally defective children who displayed bizarre behavior were promptly labeled autistic” ( Kanner 1965).
In the same paper Kanner also wrote:
‘To complicate things further, Crewel, in the hope of avoiding confusion between true autism and other conditions with autistic-like features, suggested the term pseudo-autism for the latter. Even this term came to be employed haphazardly, and conditions variously described as hospitalism, anaclitic depression, and separation anxiety were put under the heading of pseudo-autism’.
In 2007 Rutter et al in describing children who suffered severe insitutional deprivation in Romanian orphanges who met diagnostic criteria for an ASD using ADI-R and ADOS coined another term ‘Quasi-autism’ reminiscent of Crewel’s use of the lable ‘Pseudo Autism’.
If you thow out too wide a net you catch all the wrong kinds of fish. Over the last few decades ‘autism’ has been claimed to overlap with intellectual disability, schizophrenia, ADHD, developmental delay, childhood language disorders, epilepsy, depression, social anxiety, shyness and many other conditions. The further broadening of ‘autism spectrum disorders’ may lead to another spike in the so-called ‘autism epidemic’.
Raj there will NOT be another spike in autism cases. Scientist have discover a genetic marker for autism which means it can’t be far now until babies in the womb can be tested for it. What will be done if this genetic marker is found out to be turned on? The same thing that happens to those who carry the genetic marker for Down’s Syndrome: they will be aborted. Parents want “perfect” children not unlike what happened in Sparta in ancient Greece all those years ago.
“I share Leo Kanner’s view on what true ‘autism’ is and is not.”
Why share his views if no-one can or has defined what autism is?
Do you ever read your posts to see how they come across to other people? If you did, I’m sure you would have posted something a lot less stupid.
@msamericanpoatriot, can you point us to the research showing this genetic marker for Autism?
http://www.google.com/webhp?output=&sitesearch=&hl=en#hl=en&sugexp=ldymls&xhr=t&q=genetic+markers+for+autism&cp=16&qe=Z2VuZXRpYyBtYXJrZXJzIA&qesig=VMYx6NR322irSNlRjAwagg&pkc=AFgZ2tkTihUGBOrPV4Pw-2MxW-umfTMltGuiGhthThrKZGV6aJgJu_NDG3O3OEX163UkKlTm6bxjVUNelI0OjLTb0EK-fqm1WA&pf=p&sclient=psy&site=webhp&aq=0&aqi=&aql=&oq=genetic+markers+&pbx=1&bav=on.2,or.r_gc.r_pw.&fp=384aef4afa8e1652
Here is what google found for me.
http://gerardnadal.com/2010/05/19/autism-genetic-testing-abortion-and-prevention-part-i/
The one above mirrors my fears of us being the next target for genocide. This guy is a molecular biologist by trade.
‘http://www.google.com/webhp?ou…..4afa8e1652
‘Here is what google found for me
In this study the corresponding auther was Hakon Hakonarnson of CHOP in Philadelphia who claimed that genetic variants between cadherin 10 (CDH10) and cadherin 9 (CDH9) in the region of chromosome 5P14 was a genetic risk factor for autism:
http://www.nature.com/nature/journal/v459/n7246/abs/nature07999.html
A great media blitz by the communication departments of the many institutions lists as co-authors created quite a stir in 2009 ‘New Autism Gene Discoverd!’ Hakonarnson himself appeared on the network news shows claiming that 65% of children diagnosed with autism had this ‘autism’ gene and if he could eliminate the gene variant 15% of autism would disappear overnight. What he never mentioned in his self promoting interviews was that the common genetic polymorphism is also found in 60% of the general population.
He never told Katie Couric that she had a 60% chance to be carrying this ‘autism’ gene.
http://www.cbsnews.com/video/watch/?id=4975818n&tag=related;photovideo
Asperger Syndrome may be the most abused diagnosis of the so-called ‘Autism Spectrum Disorders’. While it is feel good for the neurodiversity movement that Asperger Syndrome is associated, they claim, with genius and would claim some of the greatest scientists (Einstein, Newton, Darwin)are Aspies. There is a darker side since Asperger Syndrome as also been claimed to have been present in some of the most despicable characters on the world stage, including Adolph Hitler and serial murderer Jeffery Dahmer:
http://www.ncbi.nlm.nih.gov/pubmed/12455663
http://books.google.com/books?id=3zXaZqtt1RIC&pg=PA24&lpg=PA24&dq=adolf+hitler+asperger+syndrome+fitzgerald&source=bl&ots=fbMVdwHnt5&sig=2IngkUU5kolXr8SsT-qsWxCzhQs&hl=en&ei=eZahTc2ONqGE0QGng4CBBQ&sa=X&oi=book_result&ct=result&resnum=9&sqi=2&ved=0CGMQ6AEwCA#v=onepage&q&f=false
Albert Einstein, Isaac Newton, Charles Darwin, Adolph Hitler and Jeffrey Dahmer were no more on the autism spectrum than my pet cat.
The work of Leo Kanner who objected to the ‘abuse’ of the diagnosis of autism’ that ‘threatens to become a fashion’ shows that that ‘Asperger Sydrome’ is becoming a fashion and that history repeats itself.
msamericanpatriot, my own feeling is that will never happen, ever. Autism is not a property of a genotype, there are identical twins that are discordant for autism. Autism is a property of a phenotype. There are teratogens that can cause autism, thalidomide, valproate, other anti-epileptics. Severe maternal stress can cause autism too. There are distinct increases in the incidence of autism in children exposed in utero to various things. The increase in autism in these cases cannot be genetic.
I appreciate that many curebies want a genetic test. I appreciate that many researchers are accepting money to look at genes and claim they will find a genetic test. My feeling is that they don’t have a clue what they are talking about.
There have been very large (multi-thousand subject) full-genome scans and they have found no gene that contributes more than a few percent to the familial type of autism. They are not going to find “the gene for autism”, because there is no “gene for autism”.
Just like there is no “gene for height”. Height is the end result of growth which depends on a multiplicity of factors, how long your leg bones are, how long your spine is, what diameter your head is. What basis is there to think that the sum of the lengths of all anatomical features that contribute to height would be controlled by one gene? None at all.
Neuroanatomy is a lot more complicated. What reason is there to think that autism would be controlled by one or a few genes. The pre-genetic family data suggested very high heritability, but when they looked at the genes, they found no smoking gun. No single gene contributes more than a few percent to an autism phenotype.
How can you have a prenatal test like that? What is the legal financial liability going to be for a false negative? A test that gives the “all clear” and then the fetus grows into someone with autism? Lifetime care for a person with autism? What if that case was one of the non-genetic cases, one caused by a teratogen or maternal stress?
The example that RAJ mentions was discussed in an earlier thread. I did some calculations on that basis and (if I remember correctly), there had to be over 100 false positives to avoid one false negative. That is over 100 fetuses that would not grow into a person with autism would have to be aborted to avoid one false negative. There are probably many couples that could not produce a fetus that would not test positive. Many of those positives would be false positives.
I don’t think it will ever be possible to produce a test that will have a low enough false negative rate with an acceptable false positive rate. That is the crucial question, at what false negative and what false positive rate.
They have one for Down’s Syndrome. Why are there few babies being born with DS if it wasn’t for a test for it? Remember the flack Palin got over her DS son and NOT aborting it. They WILL come up with one for autism and when they do it WILL be hunting season. Both DS and ASD are BOTH intellectually challenged disabilities. If they can do it with one (DS) they WILL eventually do it with the other (ASD).
Down Syndrome is caused by a duplication of an entire chromosome, chromosome 21. People with DS have 47 chromosomes. Autism is many orders of magnitude more complicated and is not a purely genetic condition.
There are some genetic conditions that were on the autism spectrum (practice now is to remove a syndrome from the autism spectrum once it is genetically identified). Rett Syndrome once was an ASD, now that the cause is known it is simply called Rett Syndrome. All of these autism-like conditions caused by genetic duplications and deletions are de novo that is they occurred for the first time in the individual that has it. These instances of autism are singleton in families, that is (usually) there is only one member of a family that has it.
The type of autism that is most common, is the familial type, where there may be several family members with an ASD, and other family members that exhibit the broader ASD phenotype. The genetics of this type of autism are (so far) completely impenetrable with no single gene having more than a few percent causation.
People who say a genetic test can be made don’t know what they are talking about. They can’t know that it is possible until they actually discover the genes and it is now well known that the genetics is very complicated and not amenable to a simple test.
If 50 genes are important (it is at least that many), there are 50! (50 factorial) different ways that those 50 genes can be put together. How many of those 50! gene combinations lead to autism? Good question, and one that will never be answered because 50! is about 3e+64, or more than 50 orders of magnitude larger than the number of humans that have ever lived.
I am talking to the genetist I posted. He considers individual like you to be idiots. He is a college professor too. His own son is autistic. So now what do you have to say for yourself. He is fighting for his son’s future. Now what do you have to say for yourself.
@msamericanpatriot, wow that took a sudden angry turn. Don’t just accept daedalus2u’s perspective if you dont want to, if you take time to read some autism research websites of which there are many, you will find what he says is verified. There are many genetic studies being done, on many differing genes. It seems clear there is no one cause of Autism, and whatever genetic combination leads to the development of ASD is complex and not well understood.
Downs Syndrome is not a relevant comparison for the reasons outlined above by daedalus2u.