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May26
Getting an “Official” Asperger’s Diagnosis: A Personal Decision
15 CommentsI’ve heard people say that until you get a diagnosis from a doctor, you can’t be sure that you have Asperger’s.
I vehemently disagree. I unconditionally support the right of all Aspies to self-diagnose, and when someone tells me that he or she is an Aspie, I don’t ask for papers. Here’s why:
1. We know ourselves better than anyone else.
We are perfectly capable of turning our intelligent, hyper-focused, perseverating minds to the task of learning about AS, poring over the different diagnostic checklists, communicating online with other Aspies, and engaging in careful self-reflection. Once we’ve done all of these things, we know more about AS than your average general practitioner or psychologist. Unfortunately, all too often, these are the people to whom we go for answers.
2. Your average general practitioner or psychologist knows very little about AS.
I can’t even count how many times I’ve heard an Aspie say that a doctor or therapist blithely dismissed his or her concerns. And why? Because the Aspie could make eye contact and converse. Or because labels are restricting, so why would anyone want one? Or because the Aspie was expressing emotion and empathy, and as we all know, people with Asperger’s are walking automatons.
3. Talking with a professional who knows very little about AS can be a very painful experience.
Five days before my assessment with an AS specialist, I went to my therapist for support. I had barely spoken the words “I feel certain that I have Asperger’s” when she started arguing with me. I spent the remainder of the session defending myself. Apparently, the fact that I could speak to her and make eye contact took me out of the running.
It’s very difficult to have these kinds of experiences when first exploring Asperger’s. For me, those first days and weeks of realization were surreal. I felt very relieved that so many pieces of my life were falling into place, but I also felt very weirded out that so many of the things I’d worked hard to overcome were simply hard-wired into my neurology. While it was a relief to know, for instance, that making lists isn’t a sign of some deeply intractable neurosis, it was also difficult to realize that I make lists all the time because my brain wiring causes me to have trouble with sequencing, memory, and the modulation of visual, auditory, tactile, vestibular, and emotional stimuli.
I was relieved not to be the psychological mess I’d always thought I was, but it was mind-bending to hear myself say, “Oh, so I’m autistic. That explains it.” I really needed some support, and when it wasn’t there, it was devastating.
So why did I go for an “official” diagnosis anyway? After all, I’d done my homework, everything in the DSM-IV fit me, and my husband corroborated all of my observations. I knew that I was right. But after 50 years of feeling invisible, unworthy, and utterly strange, I wanted someone out there to see me, hear me, understand me, take me seriously, and not send me away until I got a label that would stick.
I don’t think that many people understand the disorientation of not having a label, of not being able to give one’s way of seeing a name. I wanted a label, and I wanted it from someone other than myself. I suppose it’s my yearning to be part of the social world, to participate in that experience in which people mirror one another and help one another find identity. I’d always been the lone ranger, creating my own definitions, and asserting my own understanding. Except for my husband, I had never had a clear mirror, and when it came to an Asperger’s diagnosis, I knew how deeply I needed one. I wanted someone else to call me an Aspie, to acknowledge my group identity, and to give me my name.
Not surprisingly, the days leading up to my diagnostic assessment were almost unbearable. Coming to the understanding that I had AS was surreal, but the possibility of having that understanding denied was worse. It was utterly terrifying. Once I cut through all of my resistance to authority, my anxiety in new situations, and my awkwardness with strangers, the thought that I might go to the specialist and not be diagnosed with AS was enough to keep me up at night. It occurred to me that this fear, in and of itself, must be undeniable evidence that I have Asperger’s. I mean, have you ever met a neuro-typical person who feared not being diagnosed with an autism spectrum disorder? I certainly haven’t, but I wasn’t sure that the specialist would take this fact into consideration.
The good news is that the diagnostic session was a great experience. The doctor asked my husband and me a lot of questions. He observed my behavior and saw right through my well-honed NT acting skills. Of course, I was stimming a fair bit (okay, a lot), so that probably gave me away, along with the fact that he was able to read those nonverbal signals that everyone keeps talking about. (Don’t worry if you’ve never seen one. I haven’t either.) He pronounced me an Aspie, and he reassured me that having Asperger’s is not a problem. The problem is the way that the rest of the world sees us.
So, for once in my life, rather than telling me to “think outside the box,” someone gave me a nice box of my very own in which I could cuddle up and rest. And with this box came a diagnosis that explains practically everything about me. It was like being handed my own personal Rosetta stone. For the first time, my life made sense.
And when I got the receipt for the session, with a diagnosis of Asperger’s right there in black and white, I framed it. It hangs in my loft, a constant reminder of the day that my life truly became my own.
© 2009 by Rachel Cohen-Rottenberg
15 Responses to “Getting an “Official” Asperger’s Diagnosis: A Personal Decision”
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John Dale Lyons May 26th, 2009 at 5:50 pm
I totally empathize (whoops- there goes my diagnosis, LOL). As a kid, I was in therapy since I was 5 to about 13 years old. The therapists were kind and helpful, but there was no diagnosis yet. I just had “problems.” I was relived as an adult to be diagnosed as AS and ADD, along with mild chronic depression (dysthymia). At last, there were people like me! It sounds weird to NT’s, even to my Mom, who is herself a psychologist, but it is so liberating to have a label. You belong to a community; you’re not a lone nut with “problems.”
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4. There’s no “litmus paper” test for aspergers. They can’t do a brain scan and say yes or no with 100% accuracy. It’s all subjective.
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John Dale Lyons May 26th, 2009 at 6:43 pm
Doctor, Doctor revisited (apologies to Robert Palmer)
The hot summer night, surfin’ on the net
I’ve got to find my diagnosis yet
I need truth to soothe my head
Turn my Aspie brain to NT insteadDoctor, doctor, give me the news
I’ve got a bad case of Aspie blues
No pill’s gonna cure my ill
I’ve got a bad case of Aspie bluesA pretty face don’t make an empathetic heart
I learned that, blogger, from the start
You think I’m cute, a little bit shy
Momma, I’m an Aspie kinda guyBlogger, blogger, give me the news
I got a bad case of Aspie blues
No pill’s gonna cure my ill
I got a bad case of Aspie blues
WhooaaaI’m not sure I like it, it’s a pain in the butt
Tell me, momma, is it gonna stop?You billed my insurance, 21 copay
Smile of Freud doesn’t go away
Shrink my head, if you could
I’ve got it bad, and I’ve got it goodDoctor, doctor, gimme the news
I got a bad case of Aspie blues
No pill’s gonna cure my ill
I got a bad case of Aspie blues -
with one tiny exception, this could have been written by me.
i have not decided whether or not i can deal with NOT being diagnosed, my fear is sometimes that great. i may not be as interested in the comfy little box, but i’m having real problems with the idea that somebody might take away what comfort my self diagnosis has given me and my partner.
i’ve cancelled my next appointment with my therapist because i’m going away on vacation early, but at this point, not planning to see him again. he’s a nice enough guy, but skeptical about my ‘supposed’ AS. to be frank, i don’t need this sh*t from somebody who’s supposed to be there for ME. what Rachel writes about her old therapist is pretty much verbatim what i’ve been dealing with.
anyway.
thanks for writing about this. i felt it was coming in this multi-part series, especially after some of our email ”conversations”, and i’m grateful. i’m going to print it out and keep it with me.Ben
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and apologies for the asterisky swearing. my first ever online outburst. hopefully you’ll all understand.
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Thanks for this post, Rachel. I recently wrote about whether I wanted to pursue an official diagnosis, and concluded I don’t, not yet, anyway. A lot of that has to do with your spot-on observation that after all our reading and investigating, we often know more about a subject than the supposed experts. (My life is a series of experiences that usually prove the saying, “If you want something done right, you have to do it yourself.” I very, very often know more about a subject than the “expert” sitting across from me, which is kind of frightening, actually.)
I searched around the ‘net for diagnosis options in my area, and concluded that there’s still very little real expertise here on adults with AS. (And terribly long waiting lists.) I’m most likely to get someone who doesn’t know what he’s talking about and tells me I’m not AS, which I know I am, so what have I gained? I’ll either have to keep going to see people until I find one who has the experience to recognize me for what I am, or decide to trust an “expert” whom I don’t respect (because I know more than he does on his subject of expertise) to know more about me than I know about myself.
That doesn’t take away my sometimes quite strong need to hear external validation. That’s what motivates me to consider getting an official diagnosis, but as long as there’s so little real experience and so much misinformation on the part of therapists, I don’t think that’s the place for me to look for validation.
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Jennifer May 27th, 2009 at 5:01 am
“It occurred to me that this fear, in and of itself, must be undeniable evidence that I have Asperger’s. I mean, have you ever met a neuro-typical person who feared not being diagnosed with an autism spectrum disorder?”
Yes, this strikes a chord with me. When I realised that my partner is an Aspie, and that my daughters have something on the spectrum too, I didn’t know what to do. On the one hand, I wanted to avoid the stigma of autism- but then they would run the risk of being misunderstood their whole lives. On the other hand, I thought that if I mentions Aspergers, it would make me seem like an odd mother, who was taking these very normal-looking kids and trying to give them a label.
My children haven’t got diagnoses yet, but it’s because the medical world are being careful- which is not a bad thing. For my daughters, from all that I have read, non-verbal learning disorder seems to fit them the best. NLD is not an officially recognised diagnosis here though, but for them to get the help (that they need), they’ll need a diagnosis. If they could sail through life without the diagnosis, I wouldn’t pursue one.My 8 year old does want people to know about how she perceives the world.
When the official diagnoses comes, I want so much to help her maintain pride in herself, and remain confident, and avoid feeling stigmatized.
This is going to be my big challenge. -
I tried to get a diagnosis. It was painful and he didn’t know anything about AS. My diagnosis was Narcissistic Personality Disorder. I came home, read about it and thought, “If that’s really me, I should kill myself and put everyone else out of my misery.”
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Jennifer Gardner May 27th, 2009 at 11:56 am
My hubbie was diagnosed with OCD, ADHD & Aspergers. The doctor wasn’t sure which dominated. We did our own research and made the decision that he is an Aspie who has OCD & ADHD characteristics. The doctor specialized in ADHD so that is the diagnosis he wanted to lean toward. We are 99.9% sure that our son is also an Aspie. Is there really a need to make him go through the tests for a doctors confirmation? I think it is a matter of preference for the individual. It appears to me that most Aspie’s are adults who have long since learned to adapt. The diagnosis is a formality. I love reading everyone’s feedback. Experience and occurrences are all a matter of perspective and I love to see how Aspie’s view the world. I am in awe.
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Jennifer G, I agree with you, Aspie adults have by and large learned to adapt. I’ve often thought about how things would have been different for me if Asperger’s was known about when I was a little girl. I think I’d have made very different choices, many of which would have been easier for me, but I think I’d also never have made it as far as I have socially. Back then, I didn’t realize I “couldn’t” respond in the usual ways…I just thought I needed more practice than most.
I don’t have one good answer on whether a childhood diagnosis is helpful or harmful. I think it can be both. I’m thankful I was able to work so hard at fitting in, and that I didn’t rule out anything for myself because of a diagnosis (such as marriage and children). On the other hand, I’ve never cut myself any slack for marching to a different drummer, and it’s cost me quite a lot–meltdowns, depression, suicidal thoughts. I still wrestle every day with being an Aspie mother in a family of five. I can’t just suddenly tailor everything to my neurological needs now that I know they’re real….if I’d had a diagnosis earlier, I could have made choices earlier that honored those needs.
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This is why I want a label for my daughter! Nobody understands this. I want to give her an identity, a community, a place for her to belong and feel normal. Most people think giving her a label will be hamstringing her. I had a friend recently argue with me that the reason I wanted a label for my daughter had to be a deep-seated psychological impairment within myself! It should NOT be this hard to do what’s best for my child.
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Wanting a label for your child is evidence of a psychological impairment? Well, then I guess you’d better not encourage her to go to college, because then she will be labelled a “college graduate.” And if she wants to become a doctor, tell her to forget it, because then she’ll have that “Doctor” label to contend with. And Erin, I hope you’re not using words to describe her like loving, intelligent, energetic, or happy, because those labels are *so* limiting to a child (as we all know).
Arghh.
To borrow a phrase, your friend seems a little mind-blind on this one.
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Moksha June 1st, 2009 at 6:41 am
It’s almost scary how closely your experiences reflect mine. Most psychologists/psychiatrists make me want to tear all my hair out. How can they dismiss all I’m dealing with so casually? I STILL don’t have an official diagnosis and it’s MADDENING!
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Craig Liley July 11th, 2009 at 5:42 pm
When I was in high school, I went to three different psychologists, on the recommendation of my family physiscian. I’d originally gone to him because I was having trouble sleeping. The first two shrinks, were condescending, overbearing, and just generally not good fits. The third I liked, we got along well, he seemed to care about me. Based on the symptoms I mentioned, he diagnosed me as have severe, chronic depression. All well and good, at least it was something, but a lot of things just never fit. Not to mention that every medication or combination of meds not only seemed to not help, but seemed to make things worse.
Sadly, he no longer practices, but it is largely from my experiences with the first two doctors that I am extremely leery of going back to try for an AS diagnosis. I know that AS fits me . Much better than anything else I’ve found. Many of your posts, and many of the comments on here could have been written by me, but I know that I still feel in the back of my mind that I NEED the official document to believe that I truly belong. At the same time I am so terrified, not only of the possibility that maybe I’m not autistic, but of the whole process in general.
Still, you have been a huge source of inspiration for both Susanne and I.
Thank you -
My wife suggested to me several years ago that I might have Asperger’s due to a number of signs. I had dismissed this at first, and couldn’t tell if she was joking or not (which should have been another sign).
In the time since then I had been reading more about this condition and find myself saying “that sounds like me” more often than not. I intend on seeking an official diagnosis later this year and I can can relate to a number of things that you brought up in your post: what if I am not diagnosed, well that explains it, etc.
Fortunately, my doctor listens to patients problems, takes them seriously, and only refers patients to specialists who share that philosophy so I hope to not have the misfortune of sharing the same experiences that you and some of your readers have had with doctors.
I am making the first step on Tuesday by discussing my concerns with my family doctor and have already added this as a talking point to my list. I always brings lists to the doctors office.
Thanks for sharing your personal experiences on your blog, it is a great divergence from all of the dry, clinical information circulating on the Internet.
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About Me
I'm Rachel Cohen-Rottenberg, and I publish this blog, Journeys with Autism. I'm a wife, mother, writer, singer, artist, photographer, community volunteer, and the chapter leader for the Vermont Chapter of the Autistic Self Advocacy Network (ASAN).
At the age of 50, I awoke to my place on the autism spectrum and discovered a world of gifts, struggles, and life-changing possibilities. My latest book, The Uncharted Path: My Journey with Late-Diagnosed Autism, was published in July of 2010. My work has also appeared in Shift Journal of Alternatives: Neurodiversity and Social Change and in the Disability Rights and Neurodiversity section of the ASAN website.
My Memoir
"The Uncharted Path is an autism autobiography unlike any I’ve ever read.....I’d recommend The Uncharted Path to anyone on the spectrum, to anyone who has friends or relatives on the spectrum, and to anyone who cares for people on the spectrum. Her book is written straight from the heart.” —Gavin Bollard, author of Life with Asperger’s
“Cohen-Rottenberg is emotionally honest and skilled at relaying the stories from her childhood and adulthood that made her the person she is today....A highly recommended read."—Kate Goldfield, author of Common Scents: Adventures with Autism and Chemical Sensitivity
“What Rachel has written, few others would be able to....An enlightening journey."—Jon Gilbert, author of Same Child, Different Day
My memoir The Uncharted Path: My Journey with Late-Diagnosed Autism is now available in paperback for $17.95 and in PDF format for $8.95.
To purchase the book, please contact me by email. I accept payment via PayPal, by check, or by money order. You can also find the book for sale in paperback on Amazon.com.
Thank you for your interest in my work.
Rachel Cohen-Rottenberg
rachel@journeyswithautism.com
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