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Age of Autism Comment of the Week

AOAF Congrats to our friend Lenny Schafer of The Schafer Autism Report who commented on Jake Crosby's post HERE on "what is disability?"

"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.  

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Comments

Managing Editor

Kim here - feeling very, very human. I took Lenny's comment quite differently than many of you - and I respect all of your opinions. So please accept my apology for the appearance of being a big, fat jerk. Usually, I'm not. And I sure know Lenny has worked tirelessly for all of us - so please, don't take this as any reflection on him. It's because of Lenny I started writing and blogging at all. His SARNET and EOH list are a Godsend to our community. I don't want any hard feelings. Please.

We've closed the comments. Thanks, everyone.

KIM

Benedetta Stilwell

Okay, enough said, I am going to tell you Jake the issue Schaffer raised was important! If nothing else just for practical reasons like who gets SSI and who does not and what else is out there.

What I want- NO NEED to know is - Is my son disabled? I look at him and he is so handsome! So sweet! So level headed! So spiritual. You see, I can not judge it I am too biased. There is also a slowness about him, and not just in his voice and yet he is level headed, when he is not in a dream world??? How much do I push my son, how much can he take? If I push him too much he may have a melt down. Do I want him on the road driving a lot to and from his work, with epilepsy (even controlled)? What if that work place is not good to him and he wrecks because of stress. Do I put him in a position were other people insult him and hurt his feelings and then I am later arrested for murder because I won't take it!

My son's sister, my own daughter says I coddle him. Is she right? She could be right!

Well, She sure don't coddle him. She and him goes at it all the time. She got me up at 1:00 this past week looking all guilty and told me that her brother was crying in his room, and she got worried about him hurting himself. I think hurting himself is the last thing on his mind just hurt feelings, so what is it with her? I know she has gone too far in something that she said to him, by that guilty look. I hope she has got that out of her system and she may get a better understanding about him.

If she don't love him (and she does, she is confused like the rest of us), who will,and she is a trained nurse working with adolescent mentally ill boys! She has always had to play second to him, there may be something else going on with her. To really tell the truth, I have not really been there for her, and she has had a rough go in the last few years; a failed relationship and inflammatory disease that has come back after a Hib B.
Maybe she is not sure how disabled or disadvantaged he is either? We are all confused?

His own father is not sure either. His father up until last year worked and traveled almost all the time away from home. His father has left it all to me! Now that he is home, and has worked with our son he says he can't make it out in the real world. But is he sure?

The federal government gave him a test (he hates these tests) Sheltered work place is what they said. Okay is that disabled, is that what it means?

nhokkanen

I regularly describe my son's condition as "high-functioning autism," and will continue to do so. The phrase is not oxymoronic, and does not trivialize. It merely describes a sublevel of increased ability within the so-called norms of the disability.

Teachers regularly make this essential distinction when placing children in classrooms. The differences are quite evident when children of varying abilities are mixed. All learn from each other, which can be both positive and negative.

I can understand Mr. Schafer's desire to distinguish between faux ND's and children with a true DSM-IV diagnosis, but perhaps next time he should paint his rhetorical picture with a less broad brush.

Jake Crosby

Mr. Schafer,

I don't care how you think your comment should have been interpreted, because I found your words extremely offensive.

Lenny Schafer

Sosha, My comment about kids on the 'higher end of the spectrum' having personality disorders may have been misinterpreted. This is referring specifically to the those in the organized Nuero Diverse cult, who are high functioning (and may or may not have autism) who are trying to hijack the public's understanding of autism by trivializing it as a matter of diversity, not disability. Clinical autism should be preserved as a label of disability. These high functioning posers who have little need of treatment and cure, are by definition not disabled, and therefore not clinically autistic. I hope the DSM-V makes this distinction clearer.

Let me add again, those who are left disadvantaged on the spectrum, but not disabled, are also worthy of our support and advocacy.

Benedetta Stilwell

Well I am confused! But heck that is nothing new, I've been that way now for 22 years!

Jake Crosby

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

Benedetta Stilwell

Penny are there many services they quailfy for: Any medical? I know they have a work rehabiltation thing here. I talked to them one day when we where in Richmond 45 minutes away from where we live. They were not enthuasiasic about what work they could get for him. He likes school, wants to go again this fall so I am keeping him in it. He wants to take some law enforcement classes (I don't think this is a good idea, but it is his) I was thinking maybe a couple of classes in heating and air.

Penny

Kim, Re: "Which is why so many higher functioning kids have been excluded from DDS for so many years - (IQ too high) or people with Asperger's are excluded from many programs."
Just to be clear, many individuals with AS and PDD-NOS do qualify for regional center (DDS) services in CA. Their functioning (regardless of IQ) IS considered substantially handicapping and they are found eligible to receive services.
Excerpts from the recently released updated caseload report from DDS:
Page 1
"The term Autistic Spectrum Disorder (ASD) is used to refer to this larger group. Each of the disorders in on the autism spectrum has unique symptoms that vary in severity and scope. ASD includes Autistic Disorder, Asperger's Disorder, Rett's Disorder, Pervasive Developmental Disorder Not Otherwise Specified (PDD, NOS), and Childhood Disintegrative Disorder. Together, these conditions have grown to represent more than 20 percent of the total caseload served by DDS."
Page 2
"Presently just 36 percent of the people with autism being served by DDS also have a diagnosis of mental retardation."
Page 3
"Although part of the Autistic Spectrum Disorder, persons diagnosed with Pervasive Developmental Disorder, Not Otherwise Specified (PDD, NOS) and Asperger's Disorder are not eligible for regional center services unless they possess impairments constituting a substantial handicap as defined by California Code of Regulations Title 17. Eligibility for PDD, NOS and Asperger's is determined on a case-by-case basis according to each individual's functional ability."

mlinn

Great choice, Lenny is a legend in his own right--

Benedetta Stilwell

The comment made me think! I really did not understand there was such a difference? So this needed to be said.

I have just been struggeling along, in the hit and miss kind of way. Personality disorder never occurred to me! What I was thinking was a Brain injury with epilepsy along with an undignosed auto immune disorder. But is that considered a disability? Can my son work, well yes at the right kind of job that will also allow him much rest and understanding! Can you find a job like that, and pay enough money to suvive?

There might be a job out there, along with fairies, elves, unicorns and such.

Personality disorders have the same problems too though. SSI when they turned us down stated the reason was because my son was found to be able to get along with others.

SSI also says if epilepsy is under control it is not a problem. Even if it takes money to buy the medicine? Even at the time this was said he was not allowed to drive and was changing medicines. We went through 6 changes but that did not seem any big deal when filling out the forms was SSI!

If it takes a A personality disorder to get SSI then my son might have qualified when he was on, off, on, and off again with zonnegram for three years. He was irritable to the point that he could not stand to hear my voice, he would ask me occasionally if our new home had been built over an old Indian graveyard!!! He would ask me constantly,"What have you done with my sweet mother!" He became so depressed that he could not move. He finally told me that if he had to feel like this there was no point in living. the whole family except me were afraid my son was going to hurt me, this surprised me and hurt my son's feelings. Of course his feelings were easy to hurt at that time. His feelings are tender to begin with and this zonnegram made that trait much, much worse. Still he got along with MOST school mates and teachers at high school and the community college he is going to!

If it is JUST a pesonality disorder and that is all, then maybe that person can learn to do something alone? I am still confused. Can problems be over thought?

All I know is that my son can work, but not long, not hard, sheltered

Stagmom

Sorsha, hang on - I respect your comment, I do. Surely you know I/we would never choose a comment that was slamming our community. In my mind, what Lenny was saying is that the formal term "disability" has defined parameters. Which is does. Which is why so many higher functioning kids have been excluded from DDS for so many years - (IQ too high) or people with Asperger's are excluded from many programs. That doesn't imply to me a lack of need - but a need for more education and wider parameters so that the net grows to help more people.

Again, I'd never insult people with PDD-NOS (I have a few of those in my own house) and I would highly doubt Lenny would either. There are many bloggers, however, who claim to have ASD, and are vicious toward our (your) children, denying illness and vaccine injury, denying the right to medical care, etc.

Please reconsider your anger toward us?

THanks. Kim

Sorsha

This comment is grossly offensive to those of us with kids on the 'higher end of the spectrum'. Aspergers, ppd-nos, etc are NOT personality disorders. What my son, and others like him really has is vaccine-induced neurological and immune system damage. It is NOT a personality disorder when you have a child whose brain cannot function normally and cannot process input or output correctly, and whose immune system will not function correctly. I agree the labeling of the autism spectrum is subjective and ridiculous but I'm disgusted by the growing group of people who are trivializing the serious daily struggles our 'high-functioning' children have. I am outraged that the editors of AOA would chose this horrible and dividing comment as 'commenter of the week'. You owe us an apology.

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