What is diagnosis for? What does it mean?
whirlingmind
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A diagnosis is as important for adults as it is for children. I should know as both me and my daughters are all on the spectrum. I know what it's done to me not having a diagnosis until I was an adult (and a parent).
A diagnosis is very important as it allows you legally, reasonable adjustments in the workplace, allows you (should you so wish) to contribute to research on the condition, it allows you access to the correct mental health care etc. etc. ad infinitum.
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DX AS & both daughters on the autistic spectrum
whirlingmind
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I feel like you're being overly harsh based on a few tiny snippets out of context. Like the thing about having a partner, or some traumatic personal life experience making symptoms more apparent isn't "minimizing" anything. It's just saying that it can be harder to diagnose those who have coping mechanisms that are currently working for them, but that some things that stress or upset people can make those coping mechanisms break down or stop working the way they used to.
Actually, I found the book to be a pretty good general overview. Or at least it was helpful to me when I read it. While he's not autistic himself and so that maybe limits complete understanding of what it's like, the book is generally written from a very compassionate perspective with regard to the difficulties people with asperger's can face in life.
I disagree that I was too harsh. I have heard this tale so many times, that adults are refused or have to fight for a diagnosis based on stupid comments from clinicians such as "it won't benefit you" or "there are no services for adults" etc.
And I didn't take anything out of context. They clearly meant what I took them to mean. Please explain in detail therefore what was out of context and why?
I am not trashing Tony Attwood's book, or his knowledge overall, I am pointing out where he has made ridiculous comments. He is not autistic and he can never know how it feels to be autistic or to cope as an autistic person. Autism is with you for life and how you are coping should not prevent you getting a diagnosis.
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*Truth fears no trial*
DX AS & both daughters on the autistic spectrum
I probably read more into what you were saying than is there, I think. What I was trying to get at was: Yes, those, like, four sentences are kinda stupid/misguided but the entire book shouldn't be discounted just on those few brief passages. That's all.
whirlingmind
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I hasten to add, reading your comments whirlingmind--and yours Palindrome--
I am a huge fan of Tony Attwood at this point. I think he speaks clearly and compassionately about complicated subjects and does a better job of explaining these things than most sources I have encountered.
I think the "fault" -- if such there be in this situation -- lies not with Attwood, but with the confused idea about what a diagnosis is.
I thought of it as "accurately identifying the source of various symptoms" but find that in practice it has many other purposes, chiefly and problematically allowing access to financial and therapeutic support. This seems completely at odds with the goal of correctly identifying the wiring.
I suspect that a diagnosis at this stage in my life will be useful only for tuning my tactics in approaching things I find difficult, if autism is part of the reason they are difficult for e--and useful for my wife in very much the same way. It also might point me toward more effective therapy for those issues--CBT, for example.
I think there may be a slight tiff brewing here because of miscommunication--I strongly suspect that all three of us are in essential agreement about most of this and have gotten slightly hung up on some points of emphasis.
I think Tony Attwood wrote those ridiculous things because they accurately reflect the weird and somewhat contradictory duties of the clinician giving the diagnosis.
I wish I could afford to just go out and get assessed. Instead I have written to a research program at a hospital with an autism center in the hope of obtaining an assessment as part of participating in research. Unfortunately it seems I now have to call them, and phone calls are one of those areas where I have some difficulty.
whirlingmind
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I think Tony Attwood wrote those ridiculous things because they accurately reflect the weird and somewhat contradictory duties of the clinician giving the diagnosis.
I think we have all already concurred, nothing brewing never fear.
Clinicians unfortunately subjectively decide on a whim when and why to give a diagnosis to people on the spectrum based on their own skewed reasoning, which is a lot of the problem.
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DX AS & both daughters on the autistic spectrum
......
I don't understand. I thought this was either you have it or you don't--not you don't have it when things are going well, but then do have it when things go badly and you fall apart. I am totally confused now.
This drives me absolutely nuts. I was told the exact same thing (I don't have it since I have a job and apartment) but when I pleaded with the psychiatrist that I took THREE FULL YEARS to find a job, 29 years old before I could move out and almost 30 before my first girlfriend despite being intelligent, tall and very good looking he said that I might have difficulties but having employment rules out an Aspergers diagnosis. Yes I have coped somewhat for small, familiar situations but try living with me and my Aspieness will be blatantly obvious to you! Of course he had to add it that 'everyone gets bullied' and 'everyone struggles to find work' and of course 'everyone has some autistic symptoms'
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I further explained that if I lost my job (extremely unlikely since I'm so well respected but still....), I was pretty much screwed because I have no idea how to find another job and I'm VASTLY overqualified for minimum wage jobs, he said if that were to happen it could be reassessed and I could possibly be diagnosed with Aspergers at that time. I also told him that I already 'receive' necessary accommodations by pure fluke (I have a private office for example and work alone and have an "Aspie-friendly" workplace) but that sailed right over his head. When I was a cashier, I used to have panic attacks just thinking about how am I going to survive a 4 hour shift it was so overwhelming!
Making it more confusing, he said that it's a lifelong condition and you always have it. So, let me get this straight: if I got properly diagnosed as a teenager, I would still have Aspergers Syndrome (or HFA) it but since nobody caught it and I figured it out last year I don't have it? Are you kidding me?
I tried and tried to say this to the psychiatrist and he just changed the subject by saying that Bill Gates and Einstein (who incidentally does a very well paying job!) have Aspergers and that I have the advantages of being able to pick out details that most others miss and to consider it a gift. I do but that doesn't change the fact I HAVE ASPERGER SYNDROME, PERIOD! He then said that he could put down an Aspergers DX but he didn't see the point as it could potentially cause more harm than good at this point, especially with insurance companies. Maybe it's my black and white thinking but I just want a solid yes or no answer.
I totally sympathise with you on this ...
to me this is a situation where an unskilled and rigid inflexible pychiatrist has misunderstood the reality of AS.. - not only do diagnostician have to use logic, they also have to get just how diverse spectrum disorders present.
Some of us study, hold jobs, research, create.. .. . but we still have aspergers ! !! !
Imagine telling Temple Grandin that as she has a job, networks, communicates and can maintain useful professional and long term social relationships with people, she is going to lose her diagnosis of high functionning autistic. . . .. ? ! !! !
Erm. employment rules out diagnosis ?? wtf? that psychiatrist needs re-training !
At this point I was so frustrated I just wanted to leave but yes I did. He said that insurance companies could use that as a excuse to raise your premiums in the future due to your "pre-existing condition". I assume he means that since Aspergers mean higher rates of suicide, anxiety, depression, etc you will be branded as 'too risky' even if you are perfectly healthy. I had a similar fight with my car insurance company who took something I said WAY out of context and tried to use it to reclassify me as a 'high risk' driver despite 11 years without even as much as a parking ticket.
I pretty much said that to him (he was younger than me so no doubt had little experience with Autism) and that's when I said that he could but it down but doesn't see the point. Right now my only option is to spend $700-$1200 doing a complete psychological evaluation to tell me what I already know. The only person who I know can diagnose Autism without it requires a parental interview that's out of the question. The psychiatrist did tell me that all the 'mainstream' tools they use for screening for Autism are for children only so I'm pretty much SOL unless I want to mortgage my future.
I think one of the problems which is still very much prevalent among neurotypical people working with and diagnosing autism spectrum conditions, and evident in what Attwood is saying here, is the problem of seeing autism as the symptoms rather than the cause/neurology.
For example: to a neurotypical parent, their child is autistic because he rocks or stims, has difficulty understanding social situations, and focuses obsessively on a narrow interest. That is because those things are what are visible and obvious to the parent. They can't see what their child's brain looks like, so they don't think of autism as a neurological state which causes certain behaviours. They just think of it as a set of behaviours. More alarmingly, many clinicians also see it this way.
This is bad for several reasons. One is that if you believe autism is a set of behaviours rather than a physical neurological condition, you might come to the conclusion that the person can just be "told" to behave differently and if they refuse they are being difficult, disobedient, lazy etc (I'm sure many of us who weren't diagnosed until adulthood have run into that one). Another, more relevant to this thread, is that when some clinicians are diagnosing they diagnose based on the behaviours they see rather than based on whether or not the client has autistic neurology/autistic thinking patterns. This is, of course, ridiculous. It's a bit like labelling dog a cat because it managed to make a noise which sounded like "miaow". You can call it what you like, but it's still a dog, and to claim otherwise displays a fundamental misunderstanding of what autism is. On the other hand, it's not really surprising to see Attwood (who I also respect) making statements like this, because I think up until recently this muddled-up approach was pretty much the standard way to look at things - there is a big revolution going on in autism research and treatment since the last decade, especially as more autistic people themselves enter the field.
I do understand the need to make a judgement about severity, but to do so based only on the response to current circumstances without regard for the wider life experience demonstrates ignorance and unprofessionalism.
I pretty much said that to him (he was younger than me so no doubt had little experience with Autism) and that's when I said that he could but it down but doesn't see the point. Right now my only option is to spend $700-$1200 doing a complete psychological evaluation to tell me what I already know. The only person who I know can diagnose Autism without it requires a parental interview that's out of the question. The psychiatrist did tell me that all the 'mainstream' tools they use for screening for Autism are for children only so I'm pretty much SOL unless I want to mortgage my future.
Yes - agree this is a difficult one...and a dilemma to work out what to do now..
you know you have it and that is what matters though
I feel like forcing every person ( and family members of mine ) that suggest you can't possibly have a diagnosis of aspergers if you .......have had a family, held down a demanding job ... etc etc...
to look at this http://www.nbcnews.com/id/7030731/#.UUy1HXGioXw - I watched a recent interview with him and his wife and it was v interesting hearing about how the diagnosis has changed things for him.
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A diagnosis is treated as an expedient in eligibility for services e.g., Special Education, Speech & Language therapy, Government health/medical benefits, and Social Security/Disability benefits.
More commonly, a diagnosis (in part to the Internet) is a term (a reference point) that both raises awareness, as well as assits people involved with Autism Spectrum disorders. It's actually best to refrain from overusing a specific diagnosis in order to avoid confusion, and even apathy.
Can you elaborate on this? Surely the diagnosis should be, first and foremost, an accurate?
It is possible to interpret this as saying that people should not be diagnosed if too many others share the diagnosis in order to advance some calculation about the public relations value of a limited population of the diagnosed. I don't understand this, either.
I guess it hinges on what is meant by "overusing."
As far as I can tell, the vast majority of NT people don't really give a damn about or spare a thought for autism, unless they have a relative, friend, lover or colleague with it.
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