WHERE have all the Adults gone???

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TalksToCats, in certain ways, you and your partner sound a lot like me and mine. Maybe a different mix of which of us has what going on, but very similar.

That is how it is. I definately agree. Programs and products come into existence when somebody is willing- even eager- to pay for them. Parents of autistic children are an open-pocket market for books and as many services as they can afford. (I am a parent, so I've paid into this.) The tsunami of books about autistic children are bought by parents, thus there are so many of them. I have noticed with both myself and other parents of autistic children that the greatest quantity of books are bought shortly after diagnosis in an attempt to figure out what the parent is supposed to do. Many parents will buy multiple books and read them all quickly.

Eventually those children turn into adults (as the first wave of childhood-diagnosed people have done) but then the parents are burned out on books and the only remaining market is the autistic adults themselves. It doesn't seem to be a huge market, perhaps many autistic adults find the books incorrect or useless (as has been discussed elsewhere here) and so don't buy them. Parents have no way of knowing if a book is incorrect and are unable to evaluate for quite some time if a book is useless. So the market share stays large.

What about services? The governments of many countries have written it into law that all children must be educated. That pushes special ed services. In the US, a refinement and broadening of those services has happened because of the NCLB and IDEA laws. It is likely that many US adults on WP were educated both before Aspergers Syndrome was in the DSM and before those laws existed. Those laws about education coupled with the upsurge in childhood diagnoses means many, many childhood services.

Although many governments have mandated education, which informs childhood services, no government (I could be wrong) has mandated that all adults be employed. Thus the services end instantly. The government is no longer paying for them because it is no longer legally responsible for the adults. The government has taken on the minor responsibility of sort of paying for some living expenses of disabled people but that is definately on a sliding scale of ability. There is much discussion here of how difficult it can be to convince anyone in disability departments that you need this help and qualify for it. If there were a law mandating that all adults be employed- as all children must legally be educated- the quantity of services would explode. But there is no such law and so it remains a modest trickle.

The other source of payment for services is insurance companies. They will, to some extent, pay for mental health services. But mental health services is all they will pay for (they won't help you find a job or help you succeed at it) and even there the quality and quantity of those services is decided by what insurance coverage you have.

Charities don't really count as a source of services. They may provide some here and there but I think much of that money goes to "awareness"- an attempt to educate NT people about AS people with mixed results. Some money also goes to research. Little goes to services (that I have read about).

So it's all about money. If you want a service, it has to either be paid for by the government, by insurance companies, or by you. Individuals can't pay for much in the way of services (many services that parents pay for are very limited and merely an augmentation to school provided services). Insurance companies won't if nobody makes them. And governments won't if nobody passes laws requiring it.

So now what? I don't know. I have a stake in this, as any parent of AS kids does, because I know the services will end at highschool graduation unless I can convince the government that my daughter qualifies for disability. At that point, there are 3 choices:

1)she supports herself

2)she is supported by myself and her dad (which has an automatic time limit of our own ability to do it)

3)the government supports her via disability

To this end, I try to get her as many services as I can while the government is till paying for it. In the hopes that she will be able to support herself or barring that, the long, long record of services will help her qualify for disability. Lots of parents are doing the exact same thing, which drives the services for children.

In the larger scope- which can also be done by adults here and probably is by some- I also pester charities to provide adult services (with negligable results, as others have found) and vote for any candidate based largely on their record on disability spending.

That is how it is. I definately agree. Programs and products come into existence when somebody is willing- even eager- to pay for them. Parents of autistic children are an open-pocket market for books and as many services as they can afford. (I am a parent, so I've paid into this.) The tsunami of books about autistic children are bought by parents, thus there are so many of them. I have noticed with both myself and other parents of autistic children that the greatest quantity of books are bought shortly after diagnosis in an attempt to figure out what the parent is supposed to do. Many parents will buy multiple books and read them all quickly.

Eventually those children turn into adults (as the first wave of childhood-diagnosed people have done) but then the parents are burned out on books and the only remaining market is the autistic adults themselves. It doesn't seem to be a huge market, perhaps many autistic adults find the books incorrect or useless (as has been discussed elsewhere here) and so don't buy them. Parents have no way of knowing if a book is incorrect and are unable to evaluate for quite some time if a book is useless. So the market share stays large.

What about services? The governments of many countries have written it into law that all children must be educated. That pushes special ed services. In the US, a refinement and broadening of those services has happened because of the NCLB and IDEA laws. It is likely that many US adults on WP were educated both before Aspergers Syndrome was in the DSM and before those laws existed. Those laws about education coupled with the upsurge in childhood diagnoses means many, many childhood services.

Although many governments have mandated education, which informs childhood services, no government (I could be wrong) has mandated that all adults be employed. Thus the services end instantly. The government is no longer paying for them because it is no longer legally responsible for the adults. The government has taken on the minor responsibility of sort of paying for some living expenses of disabled people but that is definately on a sliding scale of ability. There is much discussion here of how difficult it can be to convince anyone in disability departments that you need this help and qualify for it. If there were a law mandating that all adults be employed- as all children must legally be educated- the quantity of services would explode. But there is no such law and so it remains a modest trickle.

The other source of payment for services is insurance companies. They will, to some extent, pay for mental health services. But mental health services is all they will pay for (they won't help you find a job or help you succeed at it) and even there the quality and quantity of those services is decided by what insurance coverage you have.

Charities don't really count as a source of services. They may provide some here and there but I think much of that money goes to "awareness"- an attempt to educate NT people about AS people with mixed results. Some money also goes to research. Little goes to services (that I have read about).

So it's all about money. If you want a service, it has to either be paid for by the government, by insurance companies, or by you. Individuals can't pay for much in the way of services (many services that parents pay for are very limited and merely an augmentation to school provided services). Insurance companies won't if nobody makes them. And governments won't if nobody passes laws requiring it.

So now what? I don't know. I have a stake in this, as any parent of AS kids does, because I know the services will end at highschool graduation unless I can convince the government that my daughter qualifies for disability. At that point, there are 3 choices:

1)she supports herself

2)she is supported by myself and her dad (which has an automatic time limit of our own ability to do it)

3)the government supports her via disability

To this end, I try to get her as many services as I can while the government is till paying for it. In the hopes that she will be able to support herself or barring that, the long, long record of services will help her qualify for disability. Lots of parents are doing the exact same thing, which drives the services for children.

In the larger scope- which can also be done by adults here and probably is by some- I also pester charities to provide adult services (with negligable results, as others have found) and vote for any candidate based largely on their record on disability spending.

But there isn't a complete dearth of material by autistic adults. Temple Grandin's published multiple books, as has Donna Williams. Additionally, you have John Elder Robison (whose perspective on the whole thing about accommodating adults is admittedly a bit rubbish), Rudy Simone, Liane Holliday Willey, and certainly more whom I'm forgetting. There's documentary work like My Name is Sabine and Wretches and Jabberers. There are adult autistic bloggers all over the place, and I know for a fact that blog posts can be used in class syllabi or referenced in academic papers.

So the lack is either an ignorance of existing material (something that seems unlikely to me), or a possible rejection of material produced by autistic adults (not particularly the case - I know Tony Attwood references some of this work in his own writing).

Thanks for the new author names you listed. Are there any Autistic authors who were diagnosed as adults?

Another good book by autistic adults is Women From Another Planet? - it's a series of essays by several autistic women on various issues they deal with. I don't recall if any were diagnosed as children, and some were diagnosed as adults. I suspect some are self-diagnosed.

A little science here (sorry about that!). If Asperger's affects men more than women, that would imply it's a trait that, in most (but not all) of the cases, is missing on the Y chromosome.

But I'm more inclined to wonder if it's really something about women being less willing to come forward with their symptoms, or men dominating the discussion so much that women are afraid to get a word in edgewise.

....or, due to the different socio-cultural expectations of women, females are more likely to go undiagnosed.

Oh, and the current criteria was derived primarily from observing boys and men, hence we have the "all Aspies are great at math and obsessed with technology" stereotype.

Is the new description supposed to improve upon this, or is it obviously going to be just as bad?