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benh72
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04 Jul 2013, 5:35 pm

In my country, along with many others, the focus on diagnosis and treatment of ASD is on the very young; preferably pre school age.
The focus also seems to be on behaviour, as NT's and those involved in diagnosis seem to have difficulty grasping the concept that our motivation and feelings may be different, whilst our behaviour can mimic NT behaviour as we learn early to mimic behaviour we see so as to fit in - it's an evolutionary behavioural adaptation. Very young children of course haven't learned to adapt to "fit in" so they are easier to spot.

I believe it is laziness on the part of the health professionals that should be diagnosing and treating those on the spectrum, just because something is difficult to spot doesn't mean you don't bother - can you imagine if they took that view with cancer?

My personal belief is that those doing diagnosis have the same problem as those of us on the spectrum are said to have - poor theory of mind; that is, they can see the way be behave, but can't see how this is impacted by the way we think feel and see our environment.
Therefore, those of us a bit older - in my case in my 40's, have difficulty getting a definitive diagnosis, not because we are less on the spectrum, or have less difficulty, but because we have learned to adapt our external appearance and behaviour in an effort to conform somewhat and be accepted in society.

I believe if there was some reliable way for Neurologists and Psychologists to understand the divide between the way we act and the way we feel, see and experience the world it would be a major breakthrough, and diagnosis for all who want or need it would be so much easier.

In my case every time in the past, until recently that I have mentioned my suspicion I may be "on the spectrum", I have been told to disregard, it, or that I probably aren't or that I behave too normally or maintain eye contact too much.
That and that I seem too normal and must have such a mild case as to not warrant diagnosis.

Well pardon me, but I've spent so long learning to look normal, and trying to avoid brining too much attention to myself acting weird (having been hospitalised with mental illness in my teens), that I have adapted. No one who has suffered a mental illness and has had this used against them to try to manipulate, control or undermine them wants to be seen as different, and its not like there is a switch you can use to just turn it off.
My life has been F&*%ing hard, and it wasn't my fault that I always felt different, marginalised and alienated; I need an explanation and a reason so I can make my life better, not just to get told not to think about it, as that not only doesn't help it damn well hurts.

I just hope that the Psychologist I see next week will be more enlightened than others I have seen, will acknowledge and validate me, and help me to get properly diagnosed, as well as help me work out some strategies to live a happier and better life.
Life is hard enough when you suspect you are on the spectrum; it needs to be easier for us to get diagnosed so we can feel better about ourselves, understand it's not our fault that we are different, and to have access to the tools we need to be successful.

Anything less undervalues us and is essentially discrimination against us and makes us feel lesser rather than just different.



AgentPalpatine
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04 Jul 2013, 5:57 pm

benh72 wrote:
I believe if there was some reliable way for Neurologists and Psychologists to understand the divide between the way we act and the way we feel, see and experience the world it would be a major breakthrough, and diagnosis for all who want or need it would be so much easier.


I agree with you that AS dx methods should be oriented towards repeatable diagnostic tests.


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04 Jul 2013, 9:33 pm

I think you give psychologists too much credit. For many of them, it's just a day job. Client comes in, you hear them out, give some advice, you go home...

As for diagnosis. The written adult test do, in my opinon, more fully explore the reasoning behind your thoughts.

I also believe that there is a lot of missconception in the NT psychologist world, as to what Autistics do, believe, behave. There is a lot wrong in there understanding.



benh72
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04 Jul 2013, 10:12 pm

Well there are psychologists that do it for the money, and there are psychologists that actually care about their patients.
Thankfully most of the ones I've had have been the latter, though I've come across some that are the former.

Perhaps it's also an Aspie thing, but I tend to think - and get disappointed when reality sets in - that people are in occupations and vocations because they are passionate and care for the people or goods they deal with.
The reality is of course that for many people what they do for money is for money, and what they care about may be something completely different.

I'll be better acquainted with what to expect next week after my appointment, but my thinking is if you have or suspect you have some form of ASD the only psychologists that will validate you are the ones that actually have an interest, qualification, and experience in people in the ASD spectrum, and unfortunately they're pretty thin on the ground.
There is only one clinic in my area that provides this service, and therefore I will be billed accordingly; good help doesn't come cheap!



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04 Jul 2013, 11:46 pm

And I think psychologists should include sensory issues as one of the major signs of being on the Spectrum.



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04 Jul 2013, 11:50 pm

1) sensory issues,

2) patchy social skills,

3) intense intellectual interests,

4) stimming, and

5) (possibly) meltdowns

I'd say that's the big five.


*And I agree that psychologists are often lazy and look at externals. In fact, read a certain way, the DSM definition of Asperger's is just saying, This is an unsatisfying person to interview.



benh72
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05 Jul 2013, 12:34 am

Broken down to the big five that definitely counts me in.
The meltdowns are the hardest to cope with; I almost dissociate and see myself having a tantrum like a spoilt child up past bedtime, but I find it almost impossible to control, and if I don't let those pent up emotions out the anxiety and depression only get worse.

The sensory issues are a big problem too; but of course no one else can see or feel our torture as we face over stimulation, or irritation at scratchy clothes or whatever.
NT's say just ignore it, but you can't ignore it when it feels like the irritation is turned up to 10 when others would feel it as a 1 - 2.
No one should have the right to stand in judgment about the realness of what we feel and experience, other than to help us identify the cause and find a suitable treatment to make our lives easier.



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06 Jul 2013, 2:51 pm

Now, the
1)
.
.
.
5)

is my own distillation of DSM and what we often talk about here at Wrong Planet.

And I really encourage people to try a couple of quick passes and come up with their own distillations. :D



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06 Jul 2013, 2:58 pm

One category of sensory issues which bother me is repetitive noises:

like the buzz of some fluorescent lights,

like a smoke detector with a low batter which "chirps" every couple of minutes. I find this very distracting. It's like, how can I let myself go and get into a task, if at any moment I might be yanked out of the task?



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13 Jul 2013, 1:16 am

I have a teenage daughter, born when I myself was a teenager. My parents are her legal guardians. Our entire family is convinced that she is on the spectrum because her behaviors are almost identical to mine as a child (my mother says SLIGHTLY less severe, but still undeniable). Still, they have had an EXTREMELY difficult time getting her diagnosed, my mother believes in part because they are low income and receive Medicaid vouchers, but also perhaps because doctors seem to have their desire to put their own stamp on things- if you go in and say "my granddaughter is clearly autistic because she acts just like my son who was diagnosed when he was just a bit younger than her" they want to say "oh no, I think it's something else." It's really frustrating.



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17 Jul 2013, 4:02 am

I still think that tracking eye movements is the key to reliable diagnosis in adults. I just haven't got the time to do the research. And, lets face it, vanishingly few adult autistics are pleased to find out what's going on.



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03 Aug 2013, 4:39 pm

benh72 wrote:
Broken down to the big five that definitely counts me in.
The meltdowns are the hardest to cope with; I almost dissociate and see myself having a tantrum like a spoilt child up past bedtime, but I find it almost impossible to control, and if I don't let those pent up emotions out the anxiety and depression only get worse.

The sensory issues are a big problem too; but of course no one else can see or feel our torture as we face over stimulation, or irritation at scratchy clothes or whatever.
NT's say just ignore it, but you can't ignore it when it feels like the irritation is turned up to 10 when others would feel it as a 1 - 2.
No one should have the right to stand in judgment about the realness of what we feel and experience, other than to help us identify the cause and find a suitable treatment to make our lives easier.

The sensory issues are terrible for me, and I wish that were captured in the DSM (either with ASD or as its own entity).

I was merely lucky-in that I'd never heard of Asperger's, but the shrink I had at the time (2004) recognized & identified it in me (when I was 30).


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03 Aug 2013, 6:51 pm

I think while social skills may be hard to learn sensory issues are hard to find solutions for and get almost no understanding.