Comments on: Getting an “Official” Asperger’s Diagnosis: A Personal Decision http://www.journeyswithautism.com/2009/05/26/getting-an-%e2%80%9cofficial%e2%80%9d-asperger%e2%80%99s-diagnosis-a-personal-decision/ Ethics, Disability Rights, and Reports from Life on the Spectrum Wed, 08 Feb 2012 03:19:55 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: Rachel Cohen-Rottenberg http://www.journeyswithautism.com/2009/05/26/getting-an-%e2%80%9cofficial%e2%80%9d-asperger%e2%80%99s-diagnosis-a-personal-decision/comment-page-1/#comment-93475 Rachel Cohen-Rottenberg Sat, 25 Sep 2010 21:39:56 +0000 http://www.aspergerjourneys.com/?p=2440#comment-93475 Glad to help, Courtney! I hope all goes well with your decision-making process. Glad to help, Courtney! I hope all goes well with your decision-making process.

]]> By: Courtney http://www.journeyswithautism.com/2009/05/26/getting-an-%e2%80%9cofficial%e2%80%9d-asperger%e2%80%99s-diagnosis-a-personal-decision/comment-page-1/#comment-93433 Courtney Sat, 25 Sep 2010 18:41:59 +0000 http://www.aspergerjourneys.com/?p=2440#comment-93433 I really appreciated reading your article. I've been convinced that I have AS, and although my mother agrees with me, I'm afraid to get a diagnosis for the same reasons you explained. I WANT a label because I want to fit in SOMEWHERE. Plus I'm afraid of how others will react in the workplace - I work with kids with autism. Reading your article helped me realize there's others in my position. Thank you. I really appreciated reading your article. I’ve been convinced that I have AS, and although my mother agrees with me, I’m afraid to get a diagnosis for the same reasons you explained. I WANT a label because I want to fit in SOMEWHERE. Plus I’m afraid of how others will react in the workplace – I work with kids with autism. Reading your article helped me realize there’s others in my position. Thank you.

]]> By: Carson F. Ball http://www.journeyswithautism.com/2009/05/26/getting-an-%e2%80%9cofficial%e2%80%9d-asperger%e2%80%99s-diagnosis-a-personal-decision/comment-page-1/#comment-79350 Carson F. Ball Fri, 21 May 2010 03:39:42 +0000 http://www.aspergerjourneys.com/?p=2440#comment-79350 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. 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.

]]> By: Craig Liley http://www.journeyswithautism.com/2009/05/26/getting-an-%e2%80%9cofficial%e2%80%9d-asperger%e2%80%99s-diagnosis-a-personal-decision/comment-page-1/#comment-63057 Craig Liley Sat, 11 Jul 2009 21:42:02 +0000 http://www.aspergerjourneys.com/?p=2440#comment-63057 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 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

]]> By: Moksha http://www.journeyswithautism.com/2009/05/26/getting-an-%e2%80%9cofficial%e2%80%9d-asperger%e2%80%99s-diagnosis-a-personal-decision/comment-page-1/#comment-54224 Moksha Mon, 01 Jun 2009 11:41:58 +0000 http://www.aspergerjourneys.com/?p=2440#comment-54224 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! 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!

]]> By: Rachel http://www.journeyswithautism.com/2009/05/26/getting-an-%e2%80%9cofficial%e2%80%9d-asperger%e2%80%99s-diagnosis-a-personal-decision/comment-page-1/#comment-53634 Rachel Sun, 31 May 2009 12:41:48 +0000 http://www.aspergerjourneys.com/?p=2440#comment-53634 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. ;-) 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. ;-)

]]> By: Erin http://www.journeyswithautism.com/2009/05/26/getting-an-%e2%80%9cofficial%e2%80%9d-asperger%e2%80%99s-diagnosis-a-personal-decision/comment-page-1/#comment-53476 Erin Sun, 31 May 2009 03:46:27 +0000 http://www.aspergerjourneys.com/?p=2440#comment-53476 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. 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.

]]> By: Saja http://www.journeyswithautism.com/2009/05/26/getting-an-%e2%80%9cofficial%e2%80%9d-asperger%e2%80%99s-diagnosis-a-personal-decision/comment-page-1/#comment-51608 Saja Thu, 28 May 2009 09:34:52 +0000 http://www.aspergerjourneys.com/?p=2440#comment-51608 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. 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.

]]> By: Jennifer Gardner http://www.journeyswithautism.com/2009/05/26/getting-an-%e2%80%9cofficial%e2%80%9d-asperger%e2%80%99s-diagnosis-a-personal-decision/comment-page-1/#comment-51123 Jennifer Gardner Wed, 27 May 2009 16:56:53 +0000 http://www.aspergerjourneys.com/?p=2440#comment-51123 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. 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.

]]> By: LizzieK8 http://www.journeyswithautism.com/2009/05/26/getting-an-%e2%80%9cofficial%e2%80%9d-asperger%e2%80%99s-diagnosis-a-personal-decision/comment-page-1/#comment-50984 LizzieK8 Wed, 27 May 2009 11:43:19 +0000 http://www.aspergerjourneys.com/?p=2440#comment-50984 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." 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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