Why is most Autism literature concerned with children?

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Imperfected
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06 May 2015, 1:57 am

The thing is, when so much of the literature on Autism is centered around kids it helps propagate the notion that this is child-centric issue. Which disenfranchises adult suffers the attention they deserve.



Andrejake
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06 May 2015, 6:25 am

It might also be because, for most autistic children, it's way harder than for an adult to really understand its condition and deal with it. Because of this the family of a child that is on the spectrum (especially if they are non verbal) need tools to help them understand their childrens mind and how to help them.
Not that this isn't the case with adults, but might be more complicated with kids.
For me this is the main reason.



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06 May 2015, 7:22 am

Money has a lot to do with it. One can get money to get folks off of disability--which you do by teaching them the skills to hold a steady job.

But, there is yet another level of development--which is the skills necessary to form relationships. You can have excellent job skills but not have the skills to initiate and maintain romantic relationships.



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06 May 2015, 10:00 am

Imperfected wrote:
I don't like being given the impression that the only people who really care about Autism are concerned parents and that its only children with Autism who matter. Last time I checked when we turn 18 we don't suddenly stop being Autistic.


Autism doesn't end at age 18 but legal responsibility for the autist by anyone but him/herself does unless under gaurdianship. That means the market for books about autistic children will be much bigger since it will include all the people with legal responsibility; parents (who will probaby buy half a dozen such books because they are desperate for guidance), educators and a small army of affiliated professionals such as speech pathologists, pediatricians and child psychologists. In contrast, the market for books about autism in adults shrinks down to the subset of autists who would buy them and a much smaller subset of mental health professionals who specialize in it and an even smaller subset of NT spouses.

Books about autism in adults may indeed exist for mental health professionals written by other mental health professionals but they wouldn't be in your local public library and will cost you 100$ more or less if google finds one for you.

So the market for books about autism in adults is a lot smaller than the market for books about children because the people who need to understand it enough to buy a book about it shrinks drastically.

Then you come to the next limiting factor: who writes the books? There aren't a lot of NTs with enough knowledge to write such a book. That leaves autists. Plenty of adult autists have written books about autism but they are nearly all memoirs.......
.......except for Ford's A Field Guide To Earthlings. Buy it on Amazon and/or suggest to your local library to buy it.



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06 May 2015, 11:57 am

Imperfected wrote:
The thing is, when so much of the literature on Autism is centered around kids it helps propagate the notion that this is child-centric issue. Which disenfranchises adult suffers the attention they deserve.

Especially those of us who became adults before it was recognised at all.



xenocity
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06 May 2015, 12:16 pm

In the U.S., the special education programs with those suffering from autism and other disabilities ends once you turn 21.
After that there is very little federal and state programs, both of which are normally underfunded and very hard to get into.

Autism especially isn't studied in any real significance in adults and there is said to be a lack of participants in the studies that do exist in the U.S.

Also getting autism medical care and medications is notoriously expensive even with good insurance, most insurance doesn't cover much of it once you hit 21.
It also doesn't cover the full amount for children either.

This is similar in many industrial countries.


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abeautifulmind
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06 May 2015, 12:56 pm

These are perhaps some of the reasons why there is less literature on adult autism:

1. Maybe the NT society thinks that children with autism can be “transformed into Neurotypicals (NTs)” while there is still time.
2. Maybe the society thinks that adults “grow out of autism” when they become adults, so denial about adult autism.
3. It is easier for the society to accept autism in children than in adults i.e. autism is more acceptable in children. In the case of autistic adults, the society would rather label them as “weird”, “anti-social”, etc.etc and put them straight into a prison/institution rather than trying to understand them.
4. Adult autistic are regarded as those child autistic who could never be reformed, so why discuss about them/write books on them ?

Even if the entire society is obsessed with finding a "cure" for autistic children and writing tons of literature on autistic children to guide them and their parents, the underlying theme is only one: That autism needs to be cured and autistic children need to be transformed into NT children. Maybe these intellectuals will one day write literature on how to transform everything (including trees,plants ,aliens,non-humans,etc. ) into NT humans. :wink:



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06 May 2015, 1:16 pm

Because when children with ASD grow into adulthood, they will recognize that there isn't any literature about them, and realize suddenly that they have been cured. Sometimes, the absence of evidence IS the evidence of absence.

At least, most autism researchers and authors seem to think so.

I am joking, of course, but you can't argue with the conclusion. Seriously, I agree with B19; Children with ASD are the cash cow for a whole new generation of diagnosticians and therapists, whereas adults with ASD are less dependent on learning certain adaptation skills and other behaviors.


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untilwereturn
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14 May 2015, 3:48 pm

AspieUtah wrote:
Because when children with ASD grow into adulthood, they will recognize that there isn't any literature about them, and realize suddenly that they have been cured. Sometimes, the absence of evidence IS the evidence of absence.

At least, most autism researchers and authors seem to think so.

I am joking, of course, but you can't argue with the conclusion. Seriously, I agree with B19; Children with ASD are the cash cow for a whole new generation of diagnosticians and therapists, whereas adults with ASD are less dependent on learning certain adaptation skills and other behaviors.


All valid observations, I think. It does come down to money and a false perception that autism is strictly a childhood affliction that one miraculously outgrows at age 18 or 21. Now you're on your own, which does kind of suck for those of us diagnosed well into adulthood and who never had the benefits of any sort of special assistance as children.

I can understand where these thoughts would strangle the incentive for behavioral research, but what about the biological aspects? As with behavioral studies, virtually every study I've read about involving the physical aspects of autism seems to be done with children (e.g., effects of certain supplements and drugs on autistic subjects). You'd think that autistic adults would at least make useful guinea pigs for helping future generations, whether as a matter of genetic interest or trying various treatments. I might even consider volunteering for such a study.



AspieUtah
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14 May 2015, 4:52 pm

untilwereturn wrote:
AspieUtah wrote:
Because when children with ASD grow into adulthood, they will recognize that there isn't any literature about them, and realize suddenly that they have been cured. Sometimes, the absence of evidence IS the evidence of absence.

At least, most autism researchers and authors seem to think so.

I am joking, of course, but you can't argue with the conclusion. Seriously, I agree with B19; Children with ASD are the cash cow for a whole new generation of diagnosticians and therapists, whereas adults with ASD are less dependent on learning certain adaptation skills and other behaviors.

All valid observations, I think. It does come down to money and a false perception that autism is strictly a childhood affliction that one miraculously outgrows at age 18 or 21. Now you're on your own, which does kind of suck for those of us diagnosed well into adulthood and who never had the benefits of any sort of special assistance as children.

I can understand where these thoughts would strangle the incentive for behavioral research, but what about the biological aspects? As with behavioral studies, virtually every study I've read about involving the physical aspects of autism seems to be done with children (e.g., effects of certain supplements and drugs on autistic subjects). You'd think that autistic adults would at least make useful guinea pigs for helping future generations, whether as a matter of genetic interest or trying various treatments. I might even consider volunteering for such a study.

At IMFAR2015 this week, at least two pre-conference presentations were about affirmative-action employment for autistic workers (Specialisterne and others). So, it seems weird that, while there is little research, treatment or even recognition of autistic adults, they will at least be employed. :?


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15 May 2015, 4:29 pm

The framework of "childhood disease" is a part of the propaganda that denies that the validity of difference, and fills the coffers of Autism Collects (otherwise known as Austism $peaks Money) to overflowing. Although I know that it is not a popular view even here, the sometimes obsessive focus on "the need for diagnosis" of adults plays into this in some way, reinforcing the idea that disease must be diagnosed by neurotypical professionals. No-one would (I hope) argue that gay people need to be diagnosed as gay to be "real gays"; they were 'diagnosed' when they were stigmatised - it was culturally structured that they be labelled as 'abnormal' human beings (I am not for a moment suggesting that gays are abnormal!) What is normal is always to some extent culturally, socially and politically constructed, and framing the ASD children as diseased is part of something much bigger, to keep the ASD adults in their place (eg excluded from full economic participation in the job market).

Where are the articles and blogs that advocate for children with autism as neuro-different rather than diseased? Effectively the children's self-perception is being tainted at the most impressionable stage, and this is precisely what A$ wants to achieve, because it promotes the dehumanisation of people on the spectrum at all ages and stages. There is no money in treating acceptable degrees of human difference; the gay community still have a lot to teach the ASD community, politically speaking, particularly about how to seize back some political power in terms of ASD politics.

The difference is that gay children were never singled out by professionals for treatments such as ABA (a huge money maker in the ASD political world). They were certainly oppressed in other ways though.

The institutional abuse of ASD children as a group begins from early infancy, and the autism literature focus on children is meant to 'normalise' (and promote) that abuse as "help". The dots are there, the joining up of the dots somewhat clarifies this issue. I anticipate howls of rage in response to this from some..