Aspies For Freedom

Schafer report    Jan 06 2005


LETTERS

    I wish Michelle Dawson and company would stop trying to give a voice
to those like my son. He is non-verbal, not toilet-trained, completely
unaware of any dangers like heights or running into traffic, etc. If her and
her anti-therapy cohorts had their way, he would spend his days staring at
the stereo, picking his nose and jumping on his trampoline, which would make
him very happy. But years from now, who will be there to take care of him?
In Michelle Dawson's world it's not an issue. She's not changing diapers for
school-age children, staying up nights with kids who can't sleep, staying on
high alert all the time to make sure her child doesn't escape from the house
without supervision.
    If you ask her what will happen to our children years from now with no
intervention, she never provides an answer. All she knows is that she didn't
get ABA and she turned out okay so she assumes everyone else will too. Well,
I know the answer. In her world his long-term care wouldn't be an issue. My
son would never survive for long, given that he is a runner who would
happily dart into traffic without any thought. I guess we could keep him
locked up with his trampoline, but that would be on

par with keeping him in
a cage and I think that's a lot worse than ABA.
     Who speaks for my son? Surely Michelle Dawson and friends do not.
They are on a different spectrum altogether!
    C. S. - Canada

    Indeed, they may be. Given their apparent lack of diagnosis
documentation, the misanthropic attitude and behavior of those in this group
appears to be more like Borderline Personality Disorder, which is a
differential diagnosis to Aspergers.
http://www.stanford.edu/~corelli/borderline.html.  Who's to say you can't be
both?  But I'm no psychiatrist and I don't play one on TV. -L. S.

I am glad you brought that up!!! I was wondering about you?
I have never seen the documentation that says you are jewish? Are  merely claiming it to tell jokes? or get paid holidays from work?

Also I seen  picture on the net a kid purportedly yours? is he?? I have seen NO documentation what so ever!!! You might be just trying to cause trouble and claim you have kid and has autism. Which neither might be true??? How would I know - I  NEVER saw ANY documentation??

Are you even a MAN?? I never saw that birth certificate?? All I know If we saw the proof, we are all laible to go blind squinting

So how does he respond to people who have been diagnosed?

This is a bitter attack on Michelle, Schafer says "If her and her anti-therapy cohorts had their way, he would spend his days staring at
the stereo, picking his nose and jumping on his trampoline, which would make him very happy. But years from now, who will be there to take care of him?
In Michelle Dawson's world it's not an issue. She's not changing diapers for school-age children, staying up nights with kids who can't sleep, staying on high alert all the time to make sure her child doesn't escape from the house without supervision."

Any child has the right to be happy, any child in any situation should be happy because that is how children learn, not from fear and anxiety.
I can say for myself that I have stayed up all night, changed the diapers, been on high alert for years, and I have the SAME views as Michelle still on the ABA therapy.
The things that Schafer mentions are the things that can come with having a child with autism, its not easy, but wanting fair treatment for all children is a basic right that we are 100% correct to defend and expect. We dont all have to been affected by the tsunami in Asia to want to help people there, and we dont all have to be in every parents position to want to help children with autism.

How do we know that len schafer does not have any kind of mental illness?

many of the mommy brigade seem to have undiagnosed mentalillness.
none ot them have a certificate stating they are free and clear of mental ill ness

Thats true, but theres no need to assume that anyone has a specific illness, regardless of what it is.
If they want to attack and name call let them, we have facts and truth on our side and simply need to present them,

As long as we let the enemy (the autism industry) define the issue as angry, disturbed autistic activists vs. caring mothers, we're always going to lose.  And make no mistake about it, they're doing this intentionally as a calculated strategy to maintain their profits.

Several of us at AFF are mothers.  We need to make it clear that we are mothers who support autistic civil rights.  We need sites all over the Internet dedicated to views such as Amy expressed above.  We need to start groups with names like "Mothers Against Abuse of Autistic Children" and "Mothers for Autistic Civil Rights."  We need mothers walking the picket line at the JRC, holding up posters with pictures of their kids.

I challenge every mother at AFF to create a personal website explaining why you, as a mother, support autistic civil rights.  (Then post the link, or send it to me, and I'll add it to my list at Aspergian Pride.)

A large part of the problem is that many NT parents simply can't grasp the fact that it's possible for an autistic child to be speech-delayed, toilet-delayed, and heedless of danger, but otherwise intelligent!  This is so far outside the NT experience that many parents automatically assume their child must be severely and permanently ***.

Of course, it's not entirely the parents' fault.  Doctors and educators often make the same assumption, although they ought to know better.

Bonnie said "This is so far outside the NT experience that many parents automatically assume their child must be severely and permanently ***."

That is so true, and it seems that parents with newly diagnosed children are the most fervent for a cure, assuming that the child will stay the same their whole life unless drastic and immediate action is taken, such as a cure, or very intensive therapy.
Doctors are partly to blame, they are usually reluctant to give a positive prognosis that the child will develop some speech or more ability, as a small percentage do not. I was given no information when my son was diagnosed, that he may be able to talk or understand things as he developed, I had to study and find out for myself.

I guess some kids are lucky if they aren't diagnosed early. My older brother didn't speak until the age of three (other than a couple of single words). My mother was worried, but since he was her first child, didn't have older kids to compare him to. And so she didn't take him to see anybody.

Of course, he was born in 1952, and little was known about autism then. So, she didn't know what it meant at all.

Fortunately, just as she was getting ready to take him to be checked, he started talking in full sentences at the age of three (without intervention and/or speech therapy). Meaning that he was obviously very intelligent, just hadn't been ready to talk.

He then went on to teach himself to read, and read fluently by the time he turned five. On the other hand, I didn't read until the age of eight.

He is a math and computer genius, and my talents lie in languages and arts. But personality wise we are an awful lot the same. Which makes me really question the validity of separating AS and HFA into two separate diagnoses.

"Which makes me really question the validity of separating AS and HFA into two separate diagnoses."

I agree, in the UK I have been told by doctors that HFA is AS, its just differing terminology and not two separate conditions.

That's one thing I've never been able to grasp.  What's the difference?  I seem to get a completely different answer everytime I ask!  Some people say it's the same thing as Aspergers, some people say its autism with high intelligence, some people say its mild autistm with low intelligence, and all manner of variations in between!

the distinction between the 2 is an artificial one. someone with HFA basically just has AS with the impaired development of language. there is no difference at the biological level.

http://www.sarnet.org/ltr/jl-1-08-05.htm
Letter from
From Jim Laidler

Dear Mr. Schafer,

After reading your editorial "Somewhere over the Spectrum: Is Asperger Syndrome Autism?", I felt compelled to comment on some of the points you raised.

To begin with, it is a gross overstatement to say that "...the DSM-IV clearly distinguishes between the AS [Asperger's syndrome] diagnosis and that of autism..."  The DSM-IV (and the ICD-9/10) criteria for both diseases are completely subjective and have much overlap. The major distinction between the two, as you later point out, is in language, and even that is subjective - how much "delay" is normal variation and how much is true "language delay"?

You later go on to state:

"Those with autism have significantly impaired language skills, those with Aspergers do not.  The distinctions are specific and unambiguous. If one can typically speak, write, sign, etc., even if they have a number of other shared characteristics with autism, they are not autistic."

and also:

"The irony here is that if someone has enough language skills to effectively complain about the treatment of autistics, then they themselves cannot be autistic."

It is important to remember that a key feature of autism is language delay - not an absence of language or a permanent impairment of language, although many autistic people have that. Some people who are unimpeachably autistic (e.g. Temple Grandin and Mark Rimland) develop near-normal language in their late teens or adult years. I have heard both Dr. Grandin and Mark Rimland speak, and their language skills far outstrip those of the average NFL player or stock car driver.

I am also concerned by your statement:

"High functioning autism is not clinically defined and is not in the DSM-IV, and for good reason. High functioning autism is an oxymoron. If one meets the criteria for a diagnosis of autism, by definition one cannot be high-functioning."

Many things in the field of mental disorders are not defined by the DSM-IV, and for good reason - they didn't have room (or a consensus). Schizophrenia in remission is not defined, nor are the various levels of mental retardation or, for that matter "high-functioning autism" or "autistic spectrum". This lack of DSM-IV-sanctioned definition has not stopped people from using any of those terms in useful ways.

"High-functioning" autism, while not defined, allows the extremely broad (some might say uselessly broad) autism diagnosis to be subdivided into smaller groups. Do you hold the same contempt for that other undefined term, "severely affected" autism? They are both useful in similar ways.

"High functioning", in respect to autism, is a relative term - it describes a person who meets the criteria for autism and is less affected than the "average" autistic person - whatever that may be. It also carries the implication that this person is close to, but does not meet, the criteria for Asperger's syndrome - much as PDD means that the person does not meet the criteria for autism, but looks "autistic." I don't believe that anyone using that term is implying that autism is not a disability.

I would also like to answer your rhetorical question, "So why would a handful of people, amongst a few others, who apparently are for the most part Aspergers, if anything, want to identify themselves autistic?" Another answer, other than the one you provided, is that autism is a term has a wider public recognition than Asperger's syndrome, and so these people (if they, indeed "only" have Asperger's syndrome) may want the public to know what sort of problems they are dealing with, without the tedium of long explanation.

Alternatively, they could actually have been diagnosed as autistic. "Autism"
(as defined in the DSM-IV text, rather than just the table of criteria) is a life-long diagnosis. As with schizophrenia and alcoholism, the DSM-IV does not accommodate an autism "cure", only remission or improvement in function.

I must reiterate that autism and Asperger's syndrome are diagnoses that are completely subjective - there are no lab tests, X-ray studies, MRI or CT scan findings or anything else that can definitively state "this person is autistic" or "that person has Asperger's syndrome." Asking to "...see their diagnosis..." is pointless. You may as well ask to see someone's diagnosis of depression - and can't you be depressed without a note from your psychiatrist?

Despite the separate definitions in the current DSM-IV (which is not, by the way, "revealed truth" - it is just a book, written by fallible men and women), there are many reasons to believe that Asperger's syndrome is just one point (or group of points) along the "autistic spectrum". This is a spectrum that likely reaches from the profoundly disabled to the merely odd and everything in between.

I have heard for years from people with autism that they do not want to be seen as a disease that needs to be cured - they are people; different, perhaps from you, but people nonetheless. Some of them would not want to be any different than they are, even if that were possible. I implore you to stop trying to silence the people who say that they are autistic and don't want to be changed. We couldn't change them even if they wanted it.

As a father with an autistic son, I understand the pain involved for the parents, but I also see the need to let my child be who he is without me trying to make him different. I spent much of my time in fruitless efforts to "cure" him and am just now reaching the point where I accept him for who he is. I hope that you will come to see that your anger at these "...autism 'imposters'...", as you put it, is misdirected. They are not trying to keep your child from getting well, they just want to be accepted as who they are - as do we all.

Sincerely,

Jim Laidler

Read response from the editor here:
http://www.sarnet.org/ltr/lsed-1-08-05.htm

He says it very well.