Why is it so difficult to get an assessment for Asperger's?

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MissMayo
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02 Jun 2014, 2:01 pm

I'm lucky enough to live in a county which has a cutting-edge Autism research centre offering free clinical assessments by GP referral.
I first discussed the possibility of Asperger's with a GP in January. It is now June and I still haven't even been added to the waiting list!
In the meantime I have been sent to a number of psychiatrists who did not know anything about the Autism Spectrum. In March my GP finally agreed to refer me to the research centre's clinic, but three months later I discovered by contacting the centre directly that she had not done this. There was no problem with being referred to anywhere else.
It seems that I am just being blocked over and over again. All of the practitioners I have come into contact with have refused to discuss the possibility of Asperger's, meanwhile there is a fantastic resource available just a bus ride away!
It almost feels like there is some sort of government conspiracy to stop people with A.S from finding out about it.
It's driving me insane.
Anyone else had a similar experience?



LupaLuna
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02 Jun 2014, 2:06 pm

Sometimes I feel the same way. I didn't know the truth until I was 42 years old. I was lucky enough to have a psychiatrist walk up to me and tell me what was going on, and even at first I didn't believe it until I did some research on the internet about it, and the rest is history.



emtyeye
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02 Jun 2014, 4:03 pm

I also have wondered about what you say. My guess is that as society comes to understand that a lot of us misfits out here actually fit the bill for a type of disorder (at least as far as functioning in normal world goes) then they have to accept that they have been judging us as lazy, loner, crazy, or whatever label they have applied in the past.

I am talking about us older adults out here. If they have to accept we are really here and suffer a kind of disability rather than just being the lazy slobs they prefer to see us as, then they will have to help us and feel guilty while they do. Plus, it will cost money. Therefore, it is easier to pretend we do not exist and let us die off while they focus solely on kids.

However, just today I heard, once again, an ad for how autism rates are now 1 in 60 or thereabouts. I really wonder where they get that number. Like, they are counting us higher functioning people when it make the numbers look more dire for fundraising purposes, but then they turn away from adults with AS, even though we are part of those numbers.



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02 Jun 2014, 4:11 pm

.
Because it's hugely complex and mostly "invisible."


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jetbuilder
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02 Jun 2014, 4:25 pm

I contacted an autism support center directly. They replied within a few days and are sending me a packet of paperwork to fill out. If I get everything in order soon enough, I'll have an appt in July. I was actually quite surprised that they responded so fast.


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GiantHockeyFan
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02 Jun 2014, 4:29 pm

For me I believe it is a combination of few experts who understand adults and a general inability to see my "invisible" pain. Sure, I have a full time job and am well liked but am friendless, lonely, unable to connect with anyone and struggle with depression and anxiety. I am also about as textbook of an Aspie as you will find. As well, I am not a stereotypical 'geek' and one of my obsessions is hockey, a "normal" special interest.

I think a lot of people (myself included) just thought I was a shy, introverted NT who was a bit of a late bloomer. Until I really learned about Aspergers I would have assumed the same. Trust me, things would be much easier if I was just shy and introverted!



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02 Jun 2014, 4:34 pm

I especially agree with two things already said.

1) Money - there's a lot more people with ASD then they thought and its a form of passive resistance to increasing taxes, etc, to pay for it.

2) Medieval thinking among many shrinks.



Aspendos
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02 Jun 2014, 4:40 pm

emtyeye wrote:
I also have wondered about what you say. My guess is that as society comes to understand that a lot of us misfits out here actually fit the bill for a type of disorder (at least as far as functioning in normal world goes) then they have to accept that they have been judging us as lazy, loner, crazy, or whatever label they have applied in the past.

I am talking about us older adults out here. If they have to accept we are really here and suffer a kind of disability rather than just being the lazy slobs they prefer to see us as, then they will have to help us and feel guilty while they do. Plus, it will cost money. Therefore, it is easier to pretend we do not exist and let us die off while they focus solely on kids.

However, just today I heard, once again, an ad for how autism rates are now 1 in 60 or thereabouts. I really wonder where they get that number. Like, they are counting us higher functioning people when it make the numbers look more dire for fundraising purposes, but then they turn away from adults with AS, even though we are part of those numbers.


Worse. They claim it's an epidemic, for fundraising purposes, that only affects children. If they admitted that the prevalence among adults is just as high and it's just that we weren't diagnosed when *we* were children, they couldn't claim an epidemic and parents might think twice before paying for costly treatments for their children that we grew up without. Don't hold your breath waiting for anyone to spend money on adults on the spectrum.



ZakFiend
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02 Jun 2014, 5:13 pm

Aspendos wrote:
Worse. They claim it's an epidemic, for fundraising purposes, that only affects children. If they admitted that the prevalence among adults is just as high and it's just that we weren't diagnosed when *we* were children, they couldn't claim an epidemic and parents might think twice before paying for costly treatments for their children that we grew up without. Don't hold your breath waiting for anyone to spend money on adults on the spectrum.


People are not rational so they turn to public relations, one look at politics tells us most people are too stupid to govern themselves. After the bailout in 2008, no one informed should have been voting for republicans or democrats in america, yet they all did anyway. Most people are stupid.



ritualdrama
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02 Jun 2014, 5:58 pm

I know this may sound "conspiracy theorist"ish to some but, I have this feeling it's because the system wants people to remain lost. The more people who are lost the more people won't understand themselves and for instance, won't be able to get a job so that way things like unemployment/welfare can keep raking it in, instead of promoting self-awareness. Because self-awareness would fix so much.

My opinion.


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tall-p
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02 Jun 2014, 6:41 pm

MissMayo wrote:
It almost feels like there is some sort of government conspiracy to stop people with A.S from finding out about it.

There is no M O N E Y is ASD or ASD diagnosis. Very little money in helping Aspies "learn" how to perform better. There is money in pushing pills for anxiety and depression however. And so that is what most helping professionals do.


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Toy_Soldier
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02 Jun 2014, 8:29 pm

tall-p wrote:
MissMayo wrote:
It almost feels like there is some sort of government conspiracy to stop people with A.S from finding out about it.

There is no M O N E Y is ASD or ASD diagnosis. Very little money in helping Aspies "learn" how to perform better. There is money in pushing pills for anxiety and depression however. And so that is what most helping professionals do.


Makes sense.



MissMayo
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03 Jun 2014, 12:35 pm

[/quote]
There is no M O N E Y is ASD or ASD diagnosis. Very little money in helping Aspies "learn" how to perform better. There is money in pushing pills for anxiety and depression however. And so that is what most helping professionals do.[/quote]

Sadly I think you may have it spot on!



MrGrumpy
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03 Jun 2014, 12:50 pm

GiantHockeyFan wrote:
For me I believe it is a combination of few experts who understand adults and a general inability to see my "invisible" pain. Sure, I have a full time job and am well liked but am friendless, lonely, unable to connect with anyone and struggle with depression and anxiety. I am also about as textbook of an Aspie as you will find. As well, I am not a stereotypical 'geek' and one of my obsessions is hockey, a "normal" special interest.

I think a lot of people (myself included) just thought I was a shy, introverted NT who was a bit of a late bloomer. Until I really learned about Aspergers I would have assumed the same. Trust me, things would be much easier if I was just shy and introverted!


GHF - I am interested in the idea of a 'textbook' Aspie. In my experience, there is no such thing - many Aspies struggle with the practicalities of life, move 'awkwardly', cannot tolerate many sensory events, and never make eye contact.

Others, like you (and me) appear totally normal, and that is part of the problem. The pain, as you say, is invisible.

So what is to be gained from a 'diagnosis'? There is no treatment or cure, but there are lots of 'textbooks'. There is little to be gained from asking the NHS to confirm or refute the information which is so widely available in textbooks, and on forums like this one..



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25 Jun 2014, 1:59 pm

When is your appt at the center? Let us know what happens and good luck.



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25 Jun 2014, 3:04 pm

I totally understand how you feel. At least in the UK they are willing to give you a listen. In the US once you are an adult you are on your own unless you have the resources to pay out of pocket to get some sort of diagnosis. Good luck!


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