Aspies For Freedom

I keep having outraged parents of autistic children tell me that I am self-righteous because I don't want a cure and I should put myself in someone else's shoes.  I am told that I only have Asperger's so how could I know what it is like to have Kanner's or whatever.

1.  I do lack theory of mind, so really, I can't imagine myself in someone else's shoes.  Just shows their ignorance of how someone with autism thinks.

2.  I "only have Asperger's"  -- well, I can communicate verbally somewhat better than someone with Kanner's can communicate non-verbally even.  The issue is communication, not a way of thinking.

3.  I do not agree with a cure mostly because I think if people with Kanner's or other autism could get the help they need and a better way to communicate with NT's so they could make themselves happy (not neccesarily the way the NT's want it, but what they would like) ok.  I am just very pro-life.  I do not support genetic research into autism because I think it will lead to people aborting babies with autism (but some might still keep the ones with Asperger's).  If I really did not care about people with other autism types, I would not be pro-life for a prenatal autism test.  

4.  Actually, why should I care if people think I am self-righteous for being pro-life.  At least I have some moral standards.  I am not like "well, have an abortion if you don't like a baby with a cleft palate or Kanner's but having a baby with Asperger's might be fun."  Because I know saying that would mean that I do not value people with cleft palate or with Kanner's.  

5.  I am not naive enough to think that a genetic test will not be used prenatally and that people with autistic fetuses will not be encouraged by society to have abortions.  Medications to treat autism will not be developed unless companies are going to make tons of money on them.  So to me, charities that fund genetic research on autism are just pro-abortion and I will not support them.

I see it more as:

[...] = focus/attention
... = distraction/switch of attention (rapid)
~ = slow shift of attention (struggle to do so)

HFA =
1: [...][...][...][...][...][...] (Taking in bits of everything, can't focus)
2: ~~~~~ (slowly shifting towards focus on one thing)
3: [................]

AS = [.....................] / [.....................] / [.....................]

ADD = [......] / [......] / [......]

That's an excellent point!

You can't have both as they are both subgroups of the same thing (PDDs), BUT... it has long been agreed in research at least that there are many different traits and symptoms that make up "autism", and that among the whole group of people who fulfil the "triad of impairments" there are many subgroups ("clusters") that tend to show certain traits and fit a specitic profile. ONE of those is what is commonly diagnosed as "classic" autism.

Another (although closer to "Schizoid" according to the Camberwell study) would be AS (as in the more sterotypical view of AS based on Asperger's own observations: monologuing, monotonous, black-and-white-thinking, verbally gifted, stilted, verbally manipulative and capable of sophisticated verbal humour, puns etc.)

So you can be classically autistic with a relatively high IQ (HFA) and still have some traits more commonly associated with AS.

Gosh that's a lovely attitudes by those "professionals". Mind you better than having electrodes strapped to your skull... (Not everyone is as lucky as 'Electroboy' who overcame severe Bipolar with electro shock therapy: http://www.electroboy.com/)

I'm pleased to hear that, we appear to have a similar outlook/disposition in that regard.

Yeah but you need to know about something before you can really know it fits you. Plus to be honest there are some aspects of autism that unless someone points them out to you, you won't know are "different" about you.

Accepting certainly - the National Autistic Society and most local groups here are all about support, accommodation and not "cure" and other such trifle. As far as support for adults is concerned it REALLY depends where you live. Many areas only have private specialists that cost an arm and a leg, and many health districts are so hopelessly underfunded that even with a privately gained diagnosis you can't get any services or ASD-related support.

True, although whether one refers to overall intelligence or which areas of intelligence a person or society values, those *are* open to interpretation/variation.

Ouch - I thought you said they only tried to institutionalise rather than cure you

Yeah I mean that more or less describes me (although IQ is 'only' slightly above average), I did speak with only a tiny delay (although my Mum still believes it was "very early"), and walked at ca 15 months.

But speaking, language and communication are three different things. It took me a long time to understand that they are connected, and while the language has more or less caught up with the speech, the communication side of things is still sat there needing a LOT of work doing on it..

I did have phases where I fitted the "monologuing professor" stereotype better but mostly my interests are of a more basic, sensory and most important completely noncommunicative matter (at least offline, although again communication is rarely the primary point of my writing about autism).

If you're familiar with Temple Grandin (She wrote "Thinking in pictures" and "Animals in Translation") her situation was similar, although she didn't have to go through ECT.

I'm glad you can laugh about it, your parents sound like they had to be very strong against such horrible suggestions!

By that age I was still hardly walking (It was perhaps more a "freaking out over the floor tilting" thing than a motor skills thing though)... my Mum broke her leg when I was ca. 2 1/2 because she was carrying me and fell over and didn't want to drop me. So after that, for quite a while she had to keep me in my buggy more often.



, and I would probably not live past the age of 20.  (Needless to say, my 20s were terror, as I expected to die any day......until I reached the age of 30, and then realized they were full of it!)  

Shows you how far recognition and knowledge of autism has come in the U.S. since the archaic 50s and early 60s, doesn't it?

All of the above came from when I was examined and treated at the University of Michigan medical center (or behaviorial science or child psychiatric units or whatever they were called at the time) - right around the periods of the late 50s and early 60s.  If the U of M ever DID officially diagnose me as "autistic", that was never told to me, and that word was never ever used in the house.  So until two weeks, ago, I hadn't even ever considered it myself (neither has the medical and psychiatric/psychological field since then).  

For the most part, people thought I somehow must be "mistaken" about what little I had been told prognosis-wise (as mentioned above), until just this last week (after diagnosing myself as Autistic), I did find these two quotes from articles, which vindicate me.  Hoorah!!!

"People tend to think the average life expectancy of an autistic is 18 to 21 years," said Stephen Shore, director of Autism Spectrum Disorders Consulting and instructor of Special Education at Lesley University in Cambridge, MA."

"Autism was once thought to be a rare disorder. Knowledge of this condition—its diagnosis, management, causes, course, and outcome—was not considered necessary for most mental health practitioners. It was only minimally covered and discussed in child psychiatry fellowships or residencies.  When I began my child psychiatry training at the children’s psychiatric hospital at the University of Michigan Medical Center, I was assigned five autistic children to treat. I read whatever I could about the management and treatment of such children. In 1960, we routinely blamed parents for their autistic children, and we had little available in our therapeutic armamentarium to treat these children and help their families.  As a resident/fellow, I was advised to help families work through their grief and disappointment at having an autistic child and help them recognize that, in all probability, their child would be hospitalized and/or institutionalized for the rest of his or her life."  Autism Spectrum Disorders: A Research Review for Practitioners, edited by Sally Ozonoff, Ph.D., Sally J. Rogers, Ph.D., and Robert L. Hendren, D.O. Washington, D.C., American  Psychiatric Publishing, 2003, 296 pp.

Actually, I LOVED it whenever I was hospitalized......which was a lot......because I was never really "sick", and when I was in the hospital for "observation", I was finally left alone to my own thoughts, etc. and sensory disturbances were decreased, so I was in heaven during those times.  HAH!  I was always "there", though, even if they thought I was consciously "gone" somewhere.

Hey, you folks have been great in indulging my examination of the differences between Aspergers and HFA!  Can't tell you how much I appreciate it!
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Oops! I left all that stuff in there!

That is such a horrible thing to tell someone! You must have been terrified!

That's really weird that they used to think this, (life span) I have never heard that - what on earth made them believe this I wonder?

I can completely understand that, as long as they are not prodding you or hurting you, it's heaven... However a child's brain needs stimulation so I guess too much Heaven is a bad thing...

It's always nice to get such an interesting and new viewpoint!
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Oh and Re: Health, I had chronic ear infections but since I never said anything (they only knew when icky stuff started running out of my ears after the eardrums burst) I didn't really get dragged to the doctors a lot.

I will have to look this up further as I'm intrigued by this oddity now!

Yeah they're not pleasant, you may have had some (depends on how [in]sensitive you are to pain) without noticing if it doesn't get quite to that stage...

The most frustrating thing is that yes to some degree I didn't feel much pain until my eardrums burst but shortly before, I *did* and it just never crossed my mind to say anything... But I had my stuffed doggie, whose faithful tail, when flicked against the back of my ear, always soothed the pain...

At about six or seven I actually broke down crying outside the hospital after my mother was told that I couldn't have my tonsils removed (because they were so swollen, they assumed I had a cold at the time). I had been made to understand that we'd go to hospital and they'd take out those big, permanently swollen red hurty things at the back of my throat, and then my ears would never hurt again - yet here we were, walking out of the hospital!

Eventually they had to admit that my tonsils were never going to swell down on their own accord and had to operate anyway a few weeks later! LOL what a trip that was - I wouldn't let them touch me without my doggie by my side (which is utterly against all rules!), so they had to bring Doggie in (and leave a puzzled Mum, who had probably hoped I would ask for *her* instead, standing outside the operation room).

They still used Aether masks back then so when they eventually got to put the thing over my face, with doggie firmly planted in my arm (eww there's a literal picture for you...), I started "hallucinating" about row upon row of cartoon-style wiener dogs.

Why do you keep ignoring the fact that the book I was referring to dealt with these things showing up WITH or WITHOUT AS? And you do NOT have ADD, your reaction to stimulant meds is classic Bipolar mania/psychosis. (Which may I remind you is more common on the autistic spectrum)

By the way you mentioned how you had Borderline traits - well rapid-cycling Bipolar has a huge overlap with Borderline personality disorder so maybe that explains this aspect of you?

It sounds a lot like they might have thought it was a progressive disorder in your case, rather than a developmental disorder.

For future reference should I assume that when you suggest I might have something besides AS, it's not to suggest I don't have AS?  Perhaps you are suggesting the conditions you are naming might be comorbid to my purported AS, more likely?
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Indeed, or just traits of them alongside AS. I guess it's the black and white thinking again, i.e. someone says "You sound like you have mood issues" and your brain tells you "They said you have mood issues, not AS".

Indeed, or just traits of them alongside AS. I guess it's the black and white thinking again, i.e. someone says "You sound like you have mood issues" and your brain tells you "They said you have mood issues, not AS".