Why is there so little info for adults with Asperger's?

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BanjoSuzy
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18 Apr 2016, 5:36 pm

Do they think on your 18th birthday you magically transform into a neurotypical? Anytime I google things having to do with Aspergers, or look for books at the library, it's all about children. It isn't a new disorder. It's been around long enough that many people have grown up with it. It is annoying to me. I want to know what all the experts think happens when an autistic person becomes an adult. This is really the only site with any good info.



QuillAlba
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18 Apr 2016, 5:51 pm

I agree that we are poorly represented, try searching for Autism Spectrum Disorder as it may provide additional information.

Autistic children become Autistic adults, then we disappear it seems.

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18 Apr 2016, 5:55 pm

Yes, you are right, it is not a new disorder, but it is only just becoming truly "mainstream"/popular in a way that allows more focus in recent times. It was often overlooked.

To answer your question at least partially:
Some adults manage to cope with their issues, but of course not all.
Autism is easier to detect in children because children didn't create all these coping mechanisms that adults already did, as such the focus of autism research and therapies are children. The original researches by Hans Asperger all had to do with children too and not with adults so it likely remained a target of researches for a fair share of time based on the documents that were made as they provided a base to work from and known "symptoms".

The way this spectrum of disorders reflects in maturity differs from the "innocent, unaltered" and "pure" way (using these words for a lack of better words to describe this) it is expressed in children.
A certain amount of therapies is likely made around the assumption that the earlier you discover it, the better the therapies. To some extent it's probably true as you help children deal with problems that may come up in everyday life, teach them workarounds for things that are otherwise considered troublesome and (hopefully) make life generally easier than without - at least if the therapy is good.

I assume that's also why most information is about autism/Aspergers in children.


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plainjain
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19 Apr 2016, 9:49 am

I noticed that, too, BanjoSuzy. I was diagnosed last year, and the first thing I did was go online trying to find information about adults, and had very little luck except for this site. It makes me feel like I just don't exist, and I'm really struggling, and need help in some areas.

Sylvastor may be right that I've learned some coping mechanisms since childhood, but I think at least some of them are not healthy, and since I was just diagnosed, I don't have the experience of lots of therapy and programs to think back on.

Just the other day, I decided to start looking up information about things I need help with, and just dispensing with the 'autism' part. For example, I looked up, "communication skills", and found lots of good sites to go through. I feel like the autism diagnosis gives me a direction to work with, but I kind of have to leave out the 'autism' part, as an adult, and just research the individual parts of autism that effect my life, if I want help. Otherwise, I'm reading things that are written for mothers and elementary school teachers.

And from my perspective, a lot of that sounds condescending, and it causes me some anxiety.



Jacoby
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19 Apr 2016, 9:58 am

I think it comes down to the fact there is little they can do for adults, only so much you can accommodate. Basically if you don't get whatever you need as a child then we're boned as adults it seems or at least that has been my experience. Feel like I missed the boat, too late now.



SocOfAutism
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19 Apr 2016, 11:39 am

plainjain wrote:
I noticed that, too, BanjoSuzy. I was diagnosed last year, and the first thing I did was go online trying to find information about adults, and had very little luck except for this site. It makes me feel like I just don't exist, and I'm really struggling, and need help in some areas.

Sylvastor may be right that I've learned some coping mechanisms since childhood, but I think at least some of them are not healthy, and since I was just diagnosed, I don't have the experience of lots of therapy and programs to think back on.

Just the other day, I decided to start looking up information about things I need help with, and just dispensing with the 'autism' part. For example, I looked up, "communication skills", and found lots of good sites to go through. I feel like the autism diagnosis gives me a direction to work with, but I kind of have to leave out the 'autism' part, as an adult, and just research the individual parts of autism that effect my life, if I want help. Otherwise, I'm reading things that are written for mothers and elementary school teachers.

And from my perspective, a lot of that sounds condescending, and it causes me some anxiety.


^ From what I have observed, this seems to be what most young adults (and newly diagnosed adults) do, and it seems to be more useful to do it this way than to seek structured help from an adult autism service. Most adult autism services are run by neurotypicals and target people with very poor basic functioning. You could be completely fine at bathing and feeding yourself, but your bills could be a mess, or you could be having panic attacks every day when you have to deal with people. But unless it's a very basic problem, like feeding and dressing yourself, you probably can't find a structured program for it.

Online communities like this one are predominantly auties and aspies helping others by sharing their experiences and opinions. GOLD. There are a few people here like me who are neurotypical, but we are the minority and do not flex neurotypical populist ideals. If you're having a problem or have a question, just search for it or create a topic and I guarantee lots of people will have useful things to say about it.



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19 Apr 2016, 11:45 am

My home state (Utah) has one of the highest rates of autism in the United States. As such, we have an abundance of autistic advocacy, social and support groups ... for parents and children, and certain psychological professionals and legislators. NONE for autistic adults. Same with our local media portrayals and statewide institutions like employers and universities. In Utah, autistic children really do seem to disappear when they turn 18 years of age.

I would love for about 50 autistic adults to start attending these groups. The mere presence of such a crowd would wake up all those blinded parents and their legislative acquaintances ... all without saying a word. Can you hear them whisper "oh, s**t" to each other if that happened?


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19 Apr 2016, 12:14 pm

I think it's because people are thinking that children are the future. The more they help the children, the more of a future they will have. They think that once people reach a certain age, that they know every thing that they're going to need to know. The majority of the people out there also see ASDs as children's disorders.


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adoylelb90815
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19 Apr 2016, 2:09 pm

I think it's because people see Asperger's as a childhood thing, and don't realize that those children grow up and become adults with Asperger's.



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19 Apr 2016, 2:24 pm

Well, simply forgetting that we become adults or thinking that Aspergers is a childhood thing that "might go away" or that it is not worth it to "waste efforts on those unfixable adults" is also a possibility.

CockneyRebel has brought up an important point as well, which I only hinted at indirectly in my post: Children = Future. "Fixing" children = "fixing future".


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zkydz
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19 Apr 2016, 2:32 pm

If you look at it as a triage situation it makes a great deal of sense.

Identify the most at need. That would be middle to low functioning and children. Children will need the most long term support and the earlier its gotten on, the better their lives will be and therefore less of a burden on society.

Establish support systems and grow them as the need grows.

Needs grow as things are better understood and codified.

Most adults that cannot function on their own usually wind up in some sort of institutionalized situation anyway. The ones that do usually have some sort of coping skills and therefore attended to last.

Compounded by the fact that they are just really beginning to understand how to identify adults and their specific issues it's not hard to see why there are not more services for adult Auties and Aspies. I think it's a twisted form of the old saying, "In the kingdom of the blind, the one eyed man is king." So, he should stop complaining that he has to wear a monocle two inches thick and still makes Mr. Magoo look positively eagle eyed.

I do not think it is intentional. But places like Autism Speaks don't help and really grate on me because I saw them on TV for the first time on Autism Day on the morning news. All she did was describe classic autism signs and no mention of high functioning and adults. Basically, the warning signs that she was describing would or should alarm any parent that is paying attention. How about the subtle things that often go unnoticed?

It was basically live, scripted tragedy porn.


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Minionkitty
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19 Apr 2016, 2:44 pm

I live in Canada, and here, you can be assessed and diagnosed for free until your eighteenth birthday. If a clinician hasn't caught it by then, you're screwed. My grandma and I (I live with my grandparents) kept asking for me to be tested for AS/ASD. But all we got was, "We pretty much know she has it, but it would take too long for me to run an official diagnostic test" from my psychiatrist in residential treatment. I was diagnosed with Nonverbal Learning Disorder at the time. Said psychiatrist said that "Her NLD diagnosis will get her the same services, and therefore, I will not do the AS/ASD testing".

Later, when I was 20, we went to a private psychologist, where I got my diagnosis. And payed $3000 to obtain it. Sadly, there's no services here for adults with "ASD/AS traits". Or at least, none that I can find. There aren't even any for adults diagnosed with full ASD/AS.


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plainjain
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19 Apr 2016, 9:16 pm

SocOfAutism wrote:
plainjain wrote:
I noticed that, too, BanjoSuzy. I was diagnosed last year, and the first thing I did was go online trying to find information about adults, and had very little luck except for this site. It makes me feel like I just don't exist, and I'm really struggling, and need help in some areas.

Sylvastor may be right that I've learned some coping mechanisms since childhood, but I think at least some of them are not healthy, and since I was just diagnosed, I don't have the experience of lots of therapy and programs to think back on.

Just the other day, I decided to start looking up information about things I need help with, and just dispensing with the 'autism' part. For example, I looked up, "communication skills", and found lots of good sites to go through. I feel like the autism diagnosis gives me a direction to work with, but I kind of have to leave out the 'autism' part, as an adult, and just research the individual parts of autism that effect my life, if I want help. Otherwise, I'm reading things that are written for mothers and elementary school teachers.

And from my perspective, a lot of that sounds condescending, and it causes me some anxiety.


^ From what I have observed, this seems to be what most young adults (and newly diagnosed adults) do, and it seems to be more useful to do it this way than to seek structured help from an adult autism service. Most adult autism services are run by neurotypicals and target people with very poor basic functioning. You could be completely fine at bathing and feeding yourself, but your bills could be a mess, or you could be having panic attacks every day when you have to deal with people. But unless it's a very basic problem, like feeding and dressing yourself, you probably can't find a structured program for it.

Online communities like this one are predominantly auties and aspies helping others by sharing their experiences and opinions. GOLD. There are a few people here like me who are neurotypical, but we are the minority and do not flex neurotypical populist ideals. If you're having a problem or have a question, just search for it or create a topic and I guarantee lots of people will have useful things to say about it.



Oh, thanks, SocOfAutism. It's true that I'm able to basically care for myself. Well, sort of. My husband is the only one working right now, and part of that really is because of my social ineptitude. If he suddenly vanished, I don't know what I would do, as far as finances and other important things in life are concerned. I panic just thinking about it, actually. It's good to know that I'm not the only one who parses out the different aspects of autism, and tries learning about that without worrying about the 'autism' part.

I am starting to search this site, and ask questions here, and I have gotten some good answers! I very much appreciate having this place to come to!



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19 Apr 2016, 9:22 pm

I'm an adult, I'm female, and I'm an aspie it's like "three strikes, you're out". :(
In fact, if my mother hadn't found information that was specifically about female aspies on the internet I might not even think I really am on the spectrum even after being diagnosed.



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19 Apr 2016, 10:21 pm

I'm lucky. There are two support groups in my area that I will be attending just to see how things go. Tonight was interesting. First time in a room full of Aspies. The next one will be next week and it's an over 50 group.

Now, here's the irony that makes me think that the universe has a sense of humour I haven't grokked yet.

Being in NYC is toxic to me with all the stimuli around me. I have become a virtual shut in.

But, from what I read, this is the only place I could have been evaluated this fast, this efficiently and well though out with not only full test results, specifications and methodology but also recommendations, start with a social worker AND have TWO different support groups.

I am one lucky SOB.....


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RAADS-R -- 213.3
FQ -- 18.7
EQ -- 13
Aspie Quiz -- 186 out of 200
AQ: 42
AQ-10: 8.8