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Norah_W
Toucan
Joined: Apr 30, 2007
Age: 51
Posts: 295
Location: Seattle, WA
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 Posted: Sun Jun 22, 2008 3:52 pm Post subject: Why can't I get diagnosed? |
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Have any other older Aspie women been diagnosed in the Seattle area? Is it because I come in stating that I think I have AS--are the doctors pissed off by that and refuse to diagnose me? Is it because I'm an older woman and "present" as NT at least at first?
I've been to at least 4 doctors who specialize in autism and AS and the closest I came was a neurologist who said he couldn't really diagnose me based on what we covered in our session, but he referred me to a neuropsychologist, who gave me extensive tests (though none specifically for AS) and said I didn't have it--she mentioned one thing that I do agree with, which is visual processing disorder, as well as the anxiety disorders (mainly social) that I usually get diagnosed with and realize I also have.
I looked at the Seattle Aspergers board & newsletter and found yet another doctor who was listed as having knowledge of or working with Aspies. She allowed me to send in a list of things I have problems with, and I didn't mention AS. She told me various things she thought could be such as ADD and OCD and social anxiety disorder, and I like working with her (she's a psychiatrist so I'd mostly see her for meds). Howevever, it turns out she doesn't have extensive knowledge of AS, so if someone doesn't present as classically AS she might not be able to spot AS in someone that quickly.
A couple years ago I talked by phone to that doctor in New York who was featured in an article in Parade magazine in about 2002 or 2003, that resulted in a lot of people seeing themselves or their kids or family members as AS and getting diagnosed. He is mentioned on the GRASP site. He mentioned some doctors in California, but didn't know of anyone in Seattle.
I can't believe that with Microsoft and other software companies and all the IT people and techies, etc. here that we don't have a larger concentration of Aspies in the Seattle area than some other places, and there surely must be a higher concentration of doctors that can spot atypical AS than in other areas of the country, even if we don't have someone internationally known like Tony Attwood or Michelle Garcia Winner or the doctor in NY whose name I can't remember.
Does anyone have any suggestions for me? |
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sinsboldly
Free Range Aspie
Joined: Nov 22, 2006
Age: 57
Posts: 7552
Location: Oregon, USA
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| Posted: Sun Jun 22, 2008 4:37 pm Post subject: |
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Hello,
I am in Oregon, I am also an older woman and am having the same issue with getting diagnosed. Psychologists don't seem to find it any priority to diagnose me. I let them know right off that I have had various diagnoses (Mild Cyclothymia being the strongest) but those were all before 1992, and great strides have been made since and I feel I have been autistic in my life. I even had to explain carefully to one that I KNEW there was no 'treatment' for it and still she could not see what having a Dx would 'do for' me. I have had two clinical psychologists actually stand me up on my appointment with them, one got another job (after a month of waiting for the appointment) and the other one could never get his act together to find a place for the evaluations.
Roger N. Meyer is a good source for PsyD evaluations. He has a website and is quite available by email. If I had a vehicle, I would go to Portland for his suggestions to do the eval.
Merle
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The economy is getting so bad my dog is worried.
Alpo is up to $4.00 USD a can and that is $12.00 USD in dog dollars! |
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Anemone
Phoenix
Joined: Mar 18, 2008
Age: 43
Posts: 655
Location: Vancouver, Canada
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| Posted: Sun Jun 22, 2008 8:35 pm Post subject: |
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It's unfortunate but many people may simply have to wait for society to catch up before they can get diagnoses. I knew I was autistic when I was a kid, but I also knew I wasn't allowed to be, and it was probably 20 years later when I finally was "allowed" to get a diagnosis. Even then it was hard to find a psychiatrist I could go to. I think I was lucky to find the one I did (in Ottawa). And more than a decade later I'm still waiting for support services to come into existence . . .
Things are changing fast right now. It may be only a few years before things open up a lot better for women on the spectrum.
Good luck finding what you need. |
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MissConstrue
Aquarius
Joined: Feb 05, 2008
Age: 26
Posts: 11443
Location: Anywhere but HERE!
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| Posted: Sun Jun 22, 2008 9:39 pm Post subject: |
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I've also heard that some people to this day still think that autism and AS are found in men and not women.
I was stunned when I saw an article with that notion.
_________________
Oh you can't help that. We're all mad here.
__Cheshire the Cat
6thSin:Envy |
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Norah_W
Toucan
Joined: Apr 30, 2007
Age: 51
Posts: 295
Location: Seattle, WA
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| Posted: Tue Jun 24, 2008 9:09 pm Post subject: |
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I would like to just drop it at some point. I can't accept that I have AS without a diagnosis because it's just too serious a thing to accept. I know some people self-diagnose, but there are things that I would use the diagnosis for, like if someone misunderstood what I meant at work I might mention that I had an ASD and thought differently (I'd only do this if there were contstant misunderstandings). Because I don't fully meet any of the sets of criteria for AS and don't even score as high as most other Aspies on the various AS tests like the AQ and the Aspie-Quiz, I'm really ambivalent about saying I'm AS or even thinking of myself as AS. I do know I fit the criteria for social anxiety disorder and also avoidant personality disorder, and I felt comfortable self-diagnosing with those before my "diagnoses" were confirmed by several doctors.
When I first heard about AS it was very scary to me, and because it was scary and I fit some of the criteria (but not all), I thought "Well, I always knew I had something scary, but never fit the criteria before. I don't fit them all either, but it's closer than say, shizophrenia, so it must be this." I've since learned that AS isn't scary, but I still feel it's a serious diagnosis, not serious in a bad way, just a serious thing not to be thrown around lightly.
I just started seeing a psychiatrist for meds that thinks she might be able to tell something from an EEG, which is covered by my insurance and probably mightt be a good thing to have at my age anyway (51) in case there is anything else wrong I should know about. I'd like to just get that, and then if there is still no conclusion just forget about it for awhile and work on my social anxiety and other anxiety issues. Then, if I hit a wall dealing with them, and the wall seems to be related to something deeper such as AS, I could pursue it again at that time.
One worry I have is denial. I've heard so much in the nearly 7 years since I first heard about AS about people being in denial about their own or a family member's autism/AS. To be in denial is a not very good thing, and one problem I've had all my life and need to work on in therapy is that if there are bad traits mentioned (other than congenital lying, being a theif, or being a murderer), I keep thinking that maybe I might have them or that other people might think I have them even if I don't. So I know denial of one's AS is a bad trait, and since I think I have nearly every bad trait I hear about, I "know" I must be in denial of my AS. Even if I don't have AS or don't meet the criteria, if I say I don't I must be in denial.
I also wonder--what if some day someone comes up to me and says "I tihnk you have AS"? Not out of the blue, but maybe someone I've known a long time will read about it and think it sounds like me, or the woman I work with who has an autistic son will think I remind her of her son.
I did find another doctor in Seattle who could evaluate me, but it would cost more than I can afford and it's not covered by insurance. And what if he too said I didn't have AS--would I end up not believing him either? I'm not saying he would say that, but he might. I've already spent quite a lot on evaluations.
So anyway, does this all sound really crazy or what? I'm sure in the years to come, as more is known about AS and women, people lke me may be better able to get diagnosed. |
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Norah_W
Toucan
Joined: Apr 30, 2007
Age: 51
Posts: 295
Location: Seattle, WA
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| Posted: Wed Jun 25, 2008 5:10 am Post subject: |
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Another thing that is making it increasingly confusing for me to decide if I have AS or not is the anxiety issue. I mentioned that I'd been diagnosed with social anxiety and have other anxieties. My dad also had anxieties and OCD, but he was not autistic. I think my mom may have had mild social anxiety. She wasn't autistic either. But I keep reading more and more in various places where excessive anxiety = AS, and that NT's don't have excessive anxiety except in rare cases where they may have had a traumatic upbringing. Years ago when I first learned about AS I was on a social anxiety mailing list run by a doctor, and I asked him about AS. He said that anxiety was not part of the criteria for AS, though of course it'd be possible to have both social anxiety and AS, having social anxiety doesn't mean AS.
That was a long time ago (2001) and I know more has been found out since then, but I've never read any definitive thing one way or another that someone with social anxiety must have AS. Yet anxiety is being listed more and more as a primary AS trait (and I'm assuming that women with AS would probably exhibit more anxiety or it might be part of the difference between male and female Aspies.) And sometimes, at least among some Aspies, there seems to be the implcation that NT's rarely suffer much from anxiety except in extreme situations.
It seems that the more and more I read about AS, the more confused I become and I don't know what to believe. If I read a book about AS, many of the things don't apply to me, especially the sensory things and most of the stimming. But when I read posts on forums from adult Aspies, there seems to be a really broad range of behavior accepted as being autistic behavior, and there is talk of being able to "spot" an Aspie, etc. People will look at photos and say that looks like an Aspie because of the way their eyes look. Why is it so easy for some people to spot Aspies and to be able to say with confidence that they themselves are or aren't AS? |
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Anemone
Phoenix
Joined: Mar 18, 2008
Age: 43
Posts: 655
Location: Vancouver, Canada
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| Posted: Wed Jun 25, 2008 11:32 am Post subject: |
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| Norah_W wrote: | | Why is it so easy for some people to spot Aspies and to be able to say with confidence that they themselves are or aren't AS? |
For myself - I don't know how I knew. I just knew. I guess because I'd been living with the problem my whole life.
I don't find it easy to figure out if others are autistic or not. I'm actually getting more confused as I look at the details of how to tell.
Before my diagnosis, a doctor suggested I might have ADHD, and told me about a few good books I should check out. When I read them, I felt like I was evaporating - like I wasn't there anymore. It was frightening. I think it was because if anyone put that label on me, I would become invisible to them (since the description didn't fit at all). So I guess I might look ADHD on the surface a bit, but I'm not.
The only diagnosis that fits that I was frightened of was having been sexually abused, with amnesia. That's something you only get when you're ready, I think. But that's trauma, not biology.
It might help if you simply got lots of more information, did some reading, maybe read some bios. Also compare with bios of people you identify with who aren't autistic (if you've got the time). I know that helped for me, too. |
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sinsboldly
Free Range Aspie
Joined: Nov 22, 2006
Age: 57
Posts: 7552
Location: Oregon, USA
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| Posted: Wed Jun 25, 2008 12:18 pm Post subject: |
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| Norah_W wrote: | | . Why is it so easy for some people to spot Aspies and to be able to say with confidence that they themselves are or aren't AS? |
I have no idea if I can 'spot an Aspie,' but I did see a lot of myself in a little girl that was diagnosed with Asperger's Syndrome (she was learning the recorder, and showing me her music. I asked her if she knew what the 'flat' signature meant and she didn't. When I was trying to show her, she rejected me teaching her because she 'learned that stuff in room 123 with Mrs. Webber' and she would wait until Mrs. Webber was going to teach her because that is where she learned how to play the recorder. This was so much like me I could only marvel at the similarities.
Long ago, I went to an AA meeting and realized I was an alcoholic. If they had told me breathing was my problem all along I couldn't have been more astounded! There I was, a raving alcoholic, people shunned me, ostracized me, told me I 'had a problem' called me an out of control drunk and I was so far into denial I brushed them all off as meddlers and ignorant. When the heavens parted and the light shone (finally)into my poor addled brain I was gobsmacked with the realization this was what was going on with me.
So I know how I can miss the obvious.
When I heard the segment on National Public Radio about the guy whose son was diagnosed as high functioning autism and he was 'ashamed' that his first reaction was one of shame for his condition, then the doc diagnosed HIM with Asperger's Syndrome and he realized he was ashamed for himself, too. (that was the spin on the story, not HFA and AS) I related to his description of his condition in the same way as I related to that first AA meeting and the heavens parted and the light shone into my poor addled brain and I recognized the feeling as a truth about myself just as monumental as my AA discovery.
(and yes, people have not been shy about letting me know about my 'retarded', 'too young for my age' and just plain 'being stupid' about relationships all my life)
So, that's how I 'know'. I have been here on WP for over 18 months and identify every day, other Aspies have reinforced my gentle understanding. WP is the best therapy I have ever been a part of, and for that I am grateful.
nothing earth shattering. . .just my earth that was shattered, I suppose. But I have rebuilt on that foundation and seem to be doing much better, now.
Merle |
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IdahoRose
Imaginary Friend
Joined: Feb 25, 2007
Age: 17
Posts: 4435
Location: Boise, ID
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| Posted: Wed Jun 25, 2008 9:34 pm Post subject: |
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| It's because you don't have it. When the professionals say you don't have it, you don't. |
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sinsboldly
Free Range Aspie
Joined: Nov 22, 2006
Age: 57
Posts: 7552
Location: Oregon, USA
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| Posted: Wed Jun 25, 2008 11:40 pm Post subject: |
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| IdahoRose wrote: | | It's because you don't have it. When the professionals say you don't have it, you don't. |
ah. . .were you talking to me? you didn't quote anyone.
Merle |
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ebec11
Missing In Action: Innocence
Joined: Jan 18, 2008
Posts: 5251
Location: A Bubble in the Ocean
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| Posted: Thu Jun 26, 2008 2:35 am Post subject: |
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| MissConstrue wrote: | I've also heard that some people to this day still think that autism and AS are found in men and not women.
I was stunned when I saw an article with that notion. |
 Just because 4 out of 5 people with Autism are guys, there still is the 1/5 girls!
_________________
"You can do the math a thousand way, but you can't undo the past"
From P!nk's song 'I'm Not Dead' |
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ebec11
Missing In Action: Innocence
Joined: Jan 18, 2008
Posts: 5251
Location: A Bubble in the Ocean
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| Posted: Thu Jun 26, 2008 2:38 am Post subject: |
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| IdahoRose wrote: | | It's because you don't have it. When the professionals say you don't have it, you don't. |
Not always.
My mom knew that I had Autism at 9 months, and she couldn't get a diagnosis until I was 18 months.
People just don't want to use Autism or Aspergers as a label
_________________
"You can do the math a thousand way, but you can't undo the past"
From P!nk's song 'I'm Not Dead' |
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Sedaka
Searching For My Catcher in the Rye
Joined: Jul 17, 2006
Age: 26
Posts: 5131
Location: In the recesses of my mind
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| Posted: Thu Jun 26, 2008 9:25 am Post subject: |
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going for my first appointment on this subject on july 7th... we'll see how that goes. it's an AS specialist... so obviously he kinda knows why im there... but i think i'm going to hold my tongue as much as i can on my own opinion of things cause i get the impression that they like to be the informative ones.
not sure what to expect...
gl to you all.
_________________
and yet i'm
still roaming these
empty streets at night
alone again only to find
there are no shelters here;
i must simply resolve
to play in the rain. |
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penny07960
Snowy Owl
Joined: Jun 10, 2008
Age: 44
Posts: 154
Location: US - right coast
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| Posted: Thu Jun 26, 2008 10:47 am Post subject: why do you want a Dx? |
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Can I ask why “getting a diagnosis” is important to any of you?
Aspergers (or “autism”) is just a label. Most DSM-based diagnosis comes down to “if you seem to have 10 or more of the following 15 symptoms, label XYZ can be applied”.
You are the same person whether the label “aspergers” (for example) is applied or not.
In her interesting book, The ADHD-Autism Connection: A Step Toward More Accurate Diagnoses and Effective Treatments, Diane Kennedy showed how similar the test criteria for ADHD and Autism were. Basically, anyone who met the criteria for one would meet the (same) criteria for other. Would it make a difference to you if you were diagnosed as ADHD rather than as autistic (or “on the spectrum”)? Would you think differently about yourself?
Unless we are trying to intervene in the life of a child, IMO, we are wasting a lot of time worrying about bogus DSM criteria and labels. We each have a set of strengths and weaknesses. To me the central question is “how can I use my strengths to make my life as good as it can be?”
Knowing your weaknesses is useful, focusing on them seems self-defeating. You don’t need a “diagnosis” to know yourself.
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Why atom bombs should be legal:
(1) Atom bombs don't kill people, people kill people.
(2) They are the ultimate in self-defense. No one will mug you when it means "mutually assured destruction". |
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Anemone
Phoenix
Joined: Mar 18, 2008
Age: 43
Posts: 655
Location: Vancouver, Canada
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| Posted: Thu Jun 26, 2008 2:13 pm Post subject: Re: why do you want a Dx? |
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Well, some of us need the diagnosis so we can qualify for disability. Living on the street is a not-so-fun alternative.
Some of us would like researchers to get off their butts and provide more practical information about autism, to perhaps improve the odds of our becoming employable. Even researchers don't seem to have a clue what it is. They know we have language/communication deficits, then they go off haring after ToM and empathy and extreme male brains, as if those have anything to do with specific language/communication deficits.
I personally do not feel comfortable with the description of ADHD being applied to me. I believe there is a significant difference between ADHD and autism.
And sometimes it just helps having a name for something. |
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