ASPERGER'S SYNDROME? WHY NOT SOCIAL DYSLEXIA?

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shadfly
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20 Oct 2009, 8:43 am

"Asperger's Syndrome" is not a very good name for this condition. It's almost like adding insult to injury. As if we're Asperger's problem children ourselves, a false image for most. It's a name I have great difficulty using to explain myself to others. It's just not sexy, like some of the names given to other conditions. The name itself is a large part of the stigma: it can be misconstrued into Ass-Burgers, which makes me blush.

I think a better name would be "Social Dyslexia." It's explanatory and not embarrassing to say. By making a comparison with the reading condition dyslexia, it's easy and fun to explain to someone else. It might even work better with funding agencies, to get money for more research. Below is a link to a researcher who uses the term social dyslexia:

http://www.aspergersmichigan.org/files/ ... slexia.pdf



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20 Oct 2009, 8:47 am

I like the idea, but for me, my AS is far more impairing than simple dyslexia, and to call it something so "light" would unfairly skew public view from those of us who are more profoundly affected by it.


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20 Oct 2009, 8:50 am

How about Social Learning Disorder?


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glider18
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20 Oct 2009, 8:51 am

I agree of course with the social challenges I have, and the sensory issues I have, and the literal thought and not getting jokes, and...etc.

But, Asperger's is more than just social challenges. It is also about special intense interests that many of us have---and repetitive things. So if a new term were brought about, it should also encompass those things too.

Personally, if they do away with our Asperger's label, I will miss it. Maybe we will be labelled "HFA." From my understanding, Asperger's is considered HFA by many experts anyway.


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20 Oct 2009, 8:58 am

That's true, describing only the social aspects leaves an incomplete picture. I wouldn't mind HFA but I'm not convinced the only difference is the onset of language acquisition.


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Callista
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20 Oct 2009, 9:01 am

Your "social learning disorder" or "social dyslexia" is not Asperger's; it's a type of PDD-NOS.

Asperger's is more than just social skills. You know those repetitive behaviors, obsessive interests, routines, and sensory problems? Yeah. Not social.

People who have ONLY low social skills do not have Asperger's. Simple as that. Actually, in many cases, they often can't even be given the PDD-NOS label either, because the low social skills are caused by simple social phobia, not neurological difference. In that case, the person isn't on the autism spectrum at all.


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20 Oct 2009, 9:06 am

I have all of the others but not to a debilitating degree. It does affect me though.


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Callista
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20 Oct 2009, 9:09 am

Diagnose like this:

1. Does the person have enough symptoms to qualify for diagnosis?
Yes: Go to #2.
No: Do not diagnose.
2. Do any of the symptoms cause significant impairment?
Yes: Diagnosis made.
No: Do not diagnose.

So you have to have enough symptoms, but some of them can be non-impairing IF there are others that do cause significant impairment.

If enough symptoms are present but none of them cause significant impairment, what you have is a person with a broader autism phenotype, on the non-disabled border between autistic and NT.


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20 Oct 2009, 9:12 am

Aimless wrote:
That's true, describing only the social aspects leaves an incomplete picture. I wouldn't mind HFA but I'm not convinced the only difference is the onset of language acquisition.


Good point. When I was diagnosed, it was mentioned in the clinic about the language. He told me that since I had no language delay, I was AS. But upon listening to my speech on audio cassette when I was around pre-school age, he noted problems in my speech. I also took the tape to a professional speech therapist, and she noted my speech problems.

There seems to be some debate about what is a speech delay. Is it the actual speaking of words? Or is it the speaking correctly? My youngest son who was diagnosed with AS back in the summer by a highly reputable child psychiatrist was made aware that he didn't really begin talking well until later than most children---but he still got the AS label. The obsession with interests seems to be a big indicator for AS. But don't many of the various autism labels also incorporate obsessive interests? I am still learning too.


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20 Oct 2009, 9:18 am

Callista wrote:
Your "social learning disorder" or "social dyslexia" is not Asperger's; it's a type of PDD-NOS.

Asperger's is more than just social skills. You know those repetitive behaviors, obsessive interests, routines, and sensory problems? Yeah. Not social.

People who have ONLY low social skills do not have Asperger's. Simple as that. Actually, in many cases, they often can't even be given the PDD-NOS label either, because the low social skills are caused by simple social phobia, not neurological difference. In that case, the person isn't on the autism spectrum at all.


Yes Callista---very important point here. This is another reason why such a new term would have to encompass more than just social challenges. I know that a lot of my challenges (and my son's too) come from sensory issues. Oh, and yes...those repetitive behaviors, routines, obsessive interests---that is my biography of life. And of course there are the social challenges we have.


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20 Oct 2009, 9:22 am

Quite so. Classic auties have obsessive interests just like Aspies.

My speech was odd when I was a kid, too. I used scripts a great deal.

I think, if there's a difference, it may be the verbal/performance gap. People with good verbal skills get Asperger's; people with good visual skills, Autism. And naturally the latter sort learn to speak late. But if you define it that way, then people with Asperger's would have the same range of functioning as people with Autism, because it's possible to have a verbal>performance and still be quite disabled; and there would be people with roughly equal verbal=performance, and skills scattered some other way, who couldn't be categorized as one or the other.

What we have here is a big, diverse category, not two distinct ones...


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20 Oct 2009, 9:30 am

I was also thinking in terms of the name itself, and wanted to use social dyslexia as a hypothetical example a possible alternative. Like how manic depression was renamed bipolar disorder which seems to have lesser connotations with insanity. I also think schizophrenia is a terrible name for the condition, it seems to tar and feather the sufferer. I notice the term psychosis is more in use these days.

Maybe Asperger's is the best name, when mainstream society eventually catches up to what it means in all it's facets. But in general naming a condition after a person is, I think, not always the best. What would be a good alternative name for AS?



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20 Oct 2009, 9:56 am

To answer your question Shadfly---IMO---since they stopped using Kanner's Autism and began using LFA, perhaps AS should become part of HFA---since many experts consider it that anyway. If any neat name comes to my mind, I will post it here. But for now, I can't think of anything other than what the new DSM-V will probably name it anyway---HFA.


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20 Oct 2009, 9:59 am

Well, going from the opinion of my mother, she hates the terms low/high functioning because it makes us sound like machines (like the character Data from ST: TNG). I think it would be of interest to call it Versatile Autism, or Adaptable Autism. Instead of Autism Spectrum Disability, Autism Spectrum Diagnosis because not all of us are considered disabled (in the extreme context), even though we have a more difficult time with society. But, if you want it to be more oriented toward the social issue, then how about Social Impairment Disorder?



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20 Oct 2009, 12:29 pm

Social dyslexia sounds an improvement to me. Of course, the name does not verbally list all the symptoms but at least it verbally lists one more than Asperger's Syndrome.


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20 Oct 2009, 1:07 pm

My son had a language delay and his performance skills far outweigh his verbal yet they still went with Asperger's. I asked about that and they say he showed indications of wanting to be with people. He was never a child that didn't want to be hugged by me. I was the only one he would engage with. That was almost 7 years ago so maybe they'd think differently.
Callista I don't know what to tell you. I see your point but whether I qualify as diagnosable or not does not change the way I believe my brain is wired. I've had 52 years to adjust, I am medicated with 2 medications and I no longer put myself in stressful situations if I can help it. WP is the closest thing to a social life I've had in 10 years. Before I drank myself numb to stop the shutdowns/meltdowns ( which I've learned are relative). I have a college education and I am a janitor. My executive function is very bad even on 80 mgs. of Strattera. I work very hard to maintain this simple life. I don't think I could manage much more. I have no doubt that I'm obsessive, I always have been but my obsessions are mostly on hopeless crushes that I'm too shy to act on. I have periodic intense special interests but not a life long all consuming one. I wish I did, maybe I could turn it into a career. I don't flip out if my routine is disrupted but I know I rely on them because if they are disrupted I'm walking into walls. Anyway as I said on another thread my interest in a diagnosis would be simply for people to have more realistic expectations of me. I had all the opportunities but I was incapable of using them. As far as functioning, without meds and therapy and a drastic change in what I expect of myself I believe I would simply have become too tired to live. But I like my simple life. :)

I wonder if they are going to either broaden or narrow the definition, since there seems to be so much variation. Maybe PDD-NOS will be better defined.


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