tag:blogger.com,1999:blog-5751271189667675662.post7597024218686650225..comments2024-03-12T03:43:35.156-04:00Comments on Look Me In The Eye: Un-Diagnosing Asperger'sJohn Robisonhttp://www.blogger.com/profile/07407165016025447113noreply@blogger.comBlogger50125tag:blogger.com,1999:blog-5751271189667675662.post-30643807343631426032013-10-03T07:14:08.399-04:002013-10-03T07:14:08.399-04:00Immanuel, it sounds like you need some support - p...Immanuel, it sounds like you need some support - people who see Asperger's as something other that a reason to shunt you aside. You might look for local Asperger associations or even look at the local autism society to see if they have teen or young adult support groups. John Robisonhttps://www.blogger.com/profile/07407165016025447113noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-11374015306944230312013-10-02T18:38:34.809-04:002013-10-02T18:38:34.809-04:00Im 17 and last year my mother took me to a psychia...Im 17 and last year my mother took me to a psychiatrist to "find out what's wrong with me" I was told that normally, in my situation, I would be diagnosed with asbergers. However, the doctor told me that because of the new DSM, i would diagnosed with social communication disorder. My entire life, my parents were aware of an issue with me but never did anything except yell at me when i didn't want to go into a crowded area, get angry if i didn't smile and wave to random people i don't know, or mock me because i don't have any friends like my brothers do. They even said i was a burden to the family, and my mother always told me she should hand me over to an asylum. The rediagnosis, didn't help me at all. The psychiatrist treated me like i was an object and not a person, and before i left, he told my mother this, "Now because of his condition, he won't be able to have intimate relationships like having a girl friend or getting married. He could possibly make some friends, but he won't be able to maintain the friendship. He won't be unable to get a job or go to college." Then he continues to whisper to my mother like i couldn't hear what he's been saying, "The best you could do is have him start therapy, and if that doesn't work, then a mental hospital is always a good option."<br /><br />So yeah, i am clueless on what to do now. I've been taking therapy for 2 weeks now, and it turns out that my therapist doesn't even know what social communication disorder is, so why i am there is beyond me.Hellwalkerhttps://www.blogger.com/profile/12950268491582336836noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-74144520176258710182012-02-27T11:53:39.313-05:002012-02-27T11:53:39.313-05:00Thank you for saying so well what needs to be said...Thank you for saying so well what needs to be said. I have all the same questions. I am a female with Aspergers and one of my sons has Aspergers. AS can have many comorbid conditions (as you know) such as: depression, OCD, anxiety, sensory issues, phobias, etc. <br /><br />AS is so far beyond a Social Communication Disorder. And who gets to decide the way I communicate is a disorder? It makes no sense to me. <br /><br />I'm working to spread the word about females with Aspergers. I have a blog at Everyday Aspergers, and it amazes me how many females log in daily, to my blog, searching for answers and help. This is an interesting journey, to say the least. <br /><br />My husband and I enjoyed your book. And that's a high compliment coming from my sci-fi-genre husband. <br /><br />I have a Masters in Education and will use my skills and personal experience to help others as much as I can with this cause. Much support and love to you in your journey ~Sam Crafthttps://www.blogger.com/profile/04927004412375038978noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-23851095280306304682012-02-22T23:40:05.992-05:002012-02-22T23:40:05.992-05:00We will just have to heal it ourselves. Have heart...We will just have to heal it ourselves. Have heart, listen to your deepest intuitions. Take care of you self, deeply.Suehttps://www.blogger.com/profile/05961641654424184653noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-52208288137841945232012-02-22T17:46:00.447-05:002012-02-22T17:46:00.447-05:00"As I wrote on someone else's blog, now I..."As I wrote on someone else's blog, now I am no longer an Aspy; I am either Normal or Autistic. I don't do "Normal" very well, so I reckon I am just Autistic."<br /><br />This is the absurdest thing I have ever heard. If you're left in a state like this, this is not very satisfying. It's like them telling you "Deal with it yourself".<br /><br />How can you be either normal or autistic? No, what I actually mean is how can they leave the choice up to you?<br /><br />That's the main problem here, isn't it? That people believe there is such a thing as "normal". It's just how people have come to perceive the world. The sane and the mad. The healthy and the ill.<br /><br />Both have to keep to themselves. Because if they mix too much, many things would stop making sense.<br /><br />The purpose of those services is to integrate people with Asperger's into the world. It's a way to bridge the differences. It may be a bit too idealistic to think about it in those terms, but that's what it really is about.<br /><br />So it's ok to undiagnose... 90 per cent and leave them in their misery?<br /><br />But then again, this world is not very fair.Harukahttps://www.blogger.com/profile/12318901781052455245noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-16288338987982875482012-02-22T17:37:44.396-05:002012-02-22T17:37:44.396-05:00The ironic part of this is they try to mask this a...The ironic part of this is they try to mask this as a "professional" way to get the right diagnosis, while it is just to save costs on a practical level.<br /><br />"clinicians show good agreement about who falls within versus outside the autism spectrum" This reads to me just like the same old story. You're either autistic or you are not. Which is why, I assume, there still are people who refuse to recognize Asperger's as something real. As if a diagnosis made your life "easier" and "normal" people somehow missed out on something.<br /><br />I can remember two situations vividly where this came up. Both times, I was "told" that "not being normal" does not mean that there is something "wrong" with you. Which totally misses the point. It is not about whether you are normal or not. It's this black-and-white thinking that annoys me the most.<br /><br />Usually, people are happy to label you, but not when it comes to money. It's perverse. So if not being labelled as anything (besides all the nasty names that people call you) can save money, that's fine. If, though, you can gain money through keeping some labels alive, that is perfectly ok.<br /><br />It may seem a bit far-fetched, but I think this is mainly about power relations. The decision-makers can decide over people's heads to their own benefit and then they maybe see what happens. The sad truth is that when people become undiagnosed through this new definition, those who have decided over this issue will not see the damage that they have done. They're well off.<br /><br />Who cares, as long as you can save money.Harukahttps://www.blogger.com/profile/12318901781052455245noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-48516071147524603542012-02-20T03:30:11.558-05:002012-02-20T03:30:11.558-05:00I am amazed to see such an amazing post. Keep up t...I am amazed to see such an amazing post. Keep up the good work.sabreenahttps://www.blogger.com/profile/09718355700799487519noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-3242470539384198682012-02-18T04:37:48.912-05:002012-02-18T04:37:48.912-05:00John, you seem like a sensible person. I think you...John, you seem like a sensible person. I think you have enough money and resources to live large in Alabama, which is the free-est state to live in if you have money. (Sucks to be poor there.)<br /><br />Why do you continue to hang out in Assachusetts? As the saying goes,<br /><br />Massachusetts: Live Free, or Here.<br /><br />Really, an awful lot of us in the rest of the country are thinking, not secession thoughts, but expulsion thoughts. Can we expel a State, such as Massachusetts, or New York, or California?Justthisguyhttps://www.blogger.com/profile/17277333206171756636noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-36048036786865477872012-02-18T04:00:17.609-05:002012-02-18T04:00:17.609-05:00As I wrote on someone else's blog, now I am no...As I wrote on someone else's blog, now I am no longer an Aspy; I am either Normal or Autistic. I don't do "Normal" very well, so I reckon I am just Autistic. <br /><br />The shrinks are kind enough to admit that "Autistic" comes in degrees, at least.<br /><br />I correspond with some Milbloggers. An amazing number of them admit to having offspring, or other relatives, who are officially dx'd as Aspies.<br /><br />One has an Aspergian nephew who is an EOD tech in the Navy, and yes they knew he was an Aspy when they picked him up. Laserlike autistic focus and fanatical attention to details are important when dealing with Other Peoples' Explosive Gizmos.<br /><br />Keeping a cool head is good, too. I mind yer story about the magnesium and gasoline fire.Justthisguyhttps://www.blogger.com/profile/17277333206171756636noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-82897845175019703332012-02-17T12:56:47.052-05:002012-02-17T12:56:47.052-05:00the way most describe the issue is that it would a...the way most describe the issue is that it would affect services for kids and teenager, but they are forgetting about the unemployed or underemployed adults that could need various supports and work-place accommodations that would require a certain dx.kevixhttps://www.blogger.com/profile/16361734037406126676noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-80531214639370151762012-02-16T01:22:37.502-05:002012-02-16T01:22:37.502-05:00People can be gifted in certain areas. Gifted is ...People can be gifted in certain areas. Gifted is an award for high acheivements. A sort of qualification. It does take a certain part of the brain to be gifted. Most of all it takes focus and zero distraction. Confidence in your memory of facts, peicing together facts, train of thought. Autism is studied because these people are focused. They are less interested in the emotions and more determined to work on a set goal in a specified area. There emotions actually would distract them from there train of thought. To keep track of them would also. Therefore, the gifted are gifted. They want to study them and make them "normal". I would say this is only important if they are violent. A lot of people might want to study them because they don't understand this. I say just try to explain there is a time for work and a time for play. Play not necesarily like kickball before batman. But experiencing emotions and enjoying life with family and friends. The problem is they may not be as gifted trying to get back on track of what work was being done.Briansvistahttps://www.blogger.com/profile/12023203952878888926noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-50387593074023702382012-02-15T05:28:34.325-05:002012-02-15T05:28:34.325-05:00Wow, so if, as should happen, reality equates to t...Wow, so if, as should happen, reality equates to the changed diagnosis does that mean I wouldn't have Aspergers any more? I'd be an NT? If only, wouldn't it be wonderful! Or maybe not.JJhttps://www.blogger.com/profile/17443354323960196543noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-29672934500592435182012-02-15T05:26:41.544-05:002012-02-15T05:26:41.544-05:00This comment has been removed by the author.JJhttps://www.blogger.com/profile/17443354323960196543noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-46496826108352800482012-02-10T07:55:17.701-05:002012-02-10T07:55:17.701-05:00For my son, he will still be able to get some serv...For my son, he will still be able to get some services through his dual bipolar diagnosis. However, until he received his Asperger's diagnosis, he was not receiving the right kind of therapy at all. For years, he was being treated with behavior mod because he was diagnosed ODD instead. I knew it wasn't right and we were beating our heads against the wall. I just can't imagine where we would be without the proper diagnosis to get the right kind of help. :(ggluvbughttps://www.blogger.com/profile/06217122355246669193noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-74723017501189619912012-02-10T00:29:02.500-05:002012-02-10T00:29:02.500-05:00Hello John. I am married to man who probably has A...Hello John. I am married to man who probably has Asperger's, but we can not get a proper diagnosis through our health care provider as they do not accept the diagnosis. There is some testing available through private or university services but they are more costly than we have funds for yet. Until then, we are going through the only route available to us, testing of a neuro-pyschologist and then talk therapy. We have a great therapist and my husband feels good about speaking with him but I am going to request speech therapy for listening, multitasking and fine oral motor skill challenges. And that is only one area he needs help. For the most part, I have been his lone therapist. I have studied in depth, nutrition, psychology, anatomy and psychology, yoga and body work. I retired from doing my body work and only work with him now, reading studies on neurology, cognition and sensory integration. I have grown in skills to help him but wish we could have more proffesional help. I don’t have time, energy and money to develop a professional career for myself abound this all. I do wish there was comprehensive care for him and free college for me...but there is not, so we do what we can. I hope to tell the story of our struggles and triumphs at some point also, as you have. We have been following your work, and have gotten so much insight and inspiration from it. Thanks our for your tireless work in the issues.Suehttps://www.blogger.com/profile/05961641654424184653noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-32231794115541026252012-02-09T21:14:35.518-05:002012-02-09T21:14:35.518-05:00The unknown...
In 1958 at the age of six I was di...The unknown...<br /><br />In 1958 at the age of six I was diagnosed as being Autistic, and now I have a diagnosis of Asperger's Syndrome. I'll be 60 in a couple of days. There were no services when I was 6 that I'm aware of. Instead my single mother worked overtime and on weekends to afford "Speech Therapy" which was recommended. That therapy ended up being singing lessons, drama lessons, and tap dancing lessons at a theatrical school in Los Angeles. It sort of worked and I've read several articles over the last several months that suggested some of these "tools" for children diagnosed with Asperger's today. What worked was an improvement in my ability to "speak", understand "normal" social interactions via the drama lessons, and an improvement in my "clumsiness" with the tap dancing lessons. What was missing was an awareness that I was "different" from the other kids and by my teachers. Instead I was viewed as a troublemaker, a freak, the last kid to be picked for a team sport, and the prime target for being bullied. If our children today aren't protected by a diagnosis that provides help, understanding by teachers, and some insulation from bullying, then we're taking an enormous step backwards. It seems to me that those in charge of "labels" could care less about the innocent children that they may impact and more about politics and "money". It's always about the money, isn't it...alohadavehttps://www.blogger.com/profile/15636117136504838025noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-69887662219758117192012-02-08T22:21:28.979-05:002012-02-08T22:21:28.979-05:00"It is easier to build strong children than t..."It is easier to build strong children than to repair broken men." Frederick DouglassCherylhttps://www.blogger.com/profile/12025222107584299929noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-76703681603424772792012-02-08T20:17:24.725-05:002012-02-08T20:17:24.725-05:00A grandchild diagnosed with Asperger's and the...A grandchild diagnosed with Asperger's and the ensuing journey and quest for knowledge on the subject persuade me that I was/am Aspergian. Early diagnosis for our grandchild was beyond critical. Would that medical science had known 70 years ago what it knows today and that I might have benefitted from it. Depression, bullying, being "that kid" and more make for an unhappy childhood that one who has not experienced cannot begin to imagine. If but a single child is "un-diagnosed" and denied access to the support that can mediate the issue, I call down a pox on the ones who have caused this tragedy.Charlie Funkhttps://www.blogger.com/profile/03750530654220968497noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-63079028628702807642012-02-08T16:16:49.759-05:002012-02-08T16:16:49.759-05:00Teachers should be going crazy over this!
My son...Teachers should be going crazy over this! <br /><br />My son would not qualify under DSM V and therefore the school could deny him services. Without an IEP that specifies accommodations, the teacher would bang her head against a wall. She wants to do right by my son. Without an IEP, she would have to force him to do things he won't do, and he'd suffer with lower grades and therefore lower self esteem--which could lead to depression. Do we really want that?Cherylhttps://www.blogger.com/profile/12025222107584299929noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-36212938755379112272012-02-08T16:00:59.670-05:002012-02-08T16:00:59.670-05:00Another thoroughly disillusioned with it all.
Wha...Another thoroughly disillusioned with it all.<br /><br />What about the kids who identifiy themselves as Aspie? My son is comfortable and proud of having Asperger Syndrome, it is something he assocciates with the very core of who he is. And what *poof*, it is gone?<br /><br />We have worked so hard in getting him this far, I fear for his confidence and belief in himself.<br /><br />And worry about the high numbers of kids who will once more be in limbo land.Madmotherhttps://www.blogger.com/profile/18189416781378632230noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-74156611360198437172012-02-08T10:05:20.780-05:002012-02-08T10:05:20.780-05:00From Jess Wilson:
John,
Thank you for addressi...From Jess Wilson:<br /><br /><br />John, <br /><br />Thank you for addressing this again. There really are some frightening implications to these proposed changes. <br /><br />One thing I'd like to comment on - You posed and answered the question - <br /><br />"If so, where is the outcry over waste? There isn't any, because it's universally accepted among recipients that the services ARE needed. "<br /><br />I fear that characterization is misleading. While we don't find an outcry among the recipients of services, we DO face widespread public opposition to providing those services to them. <br /><br />In my experience, the outcry over 'waste' (typically so-called by those with little to no understanding of ASD) is in school board meetings from town to town across the country. I hear the arguments CONSTANTLY about the 'disproportionate cost' of Special Education 'dragging down' our public school standards and 'taking resources' from typically developing peers.<br /><br />It's dangerous rhetoric at best, catastrophic at worst, but unfortunately, it's very real, pervasive. and one more very salient reason that the DSM-V proposal is so feared by many in the community. <br /><br />It's also why, in my view, we still have so much more work to do toward educating the public about autism and the longer term implications of doing nothing for those who desperately need (and benefit so greatly) from support. <br /><br />Thank you again for adding your powerful voice to the conversation. <br /><br />JessJohn Robisonhttps://www.blogger.com/profile/07407165016025447113noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-46802486322502236202012-02-08T08:11:28.249-05:002012-02-08T08:11:28.249-05:00people losing services that they need would be a d...people losing services that they need would be a disaster, i hope this isn't the result. <br /><br />but i perrsonally wouldn't mind at all if i lost my diagnosis. i've felt nothing but bitterness since getting diagnosed with AS at the age of 30, it's been a real struggle to come to terms with it. and if the psychiatric community is going to play loose with the words and defintions for awhile, i'm content to just walk away from the whole mess. i'll still struggle socially and have the same difficulties i've always had, but i was deeply unhappy when i got the diagnosis and i welcome a change like the one being discussed. <br /><br />most adults getting diagnosed seemed relieved, happy (which is strange to me), so i understand that i'm in a small minority on this issue.mhttps://www.blogger.com/profile/13570838005937684429noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-65744966884171995792012-02-08T07:12:37.761-05:002012-02-08T07:12:37.761-05:00Severe Communication Disorder, Semantic Pragmatic ...Severe Communication Disorder, Semantic Pragmatic disorder, , PDD-nos, ADHD. These are all labels my son has gotten from the medical community. The school "diagnosed" him as Educationally Autistic, and Aspergers. (They are paid more for Autism Diagnosis. So that is what their psychiatrists diagnosed him as.)<br /><br />I "diagnose" him as Dyslexic, a visual thinker. Atypically, it's math and writing, or Dyscalculia and Dysgraphia that are his specific problems. I think part of the 20% of kids who are dyslexic and learn differently are given all kinds of labels. Look to Bipolar and ADHD to increase as Aspergians lose their label. Dyslexics get all kinds of labels from schools who are too rigid to teach them. In regards to dyslexia, schools get a D-.Usethebrains Godgiveyouhttps://www.blogger.com/profile/05026223483117357541noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-20971458555820678132012-02-08T01:02:57.502-05:002012-02-08T01:02:57.502-05:00Good points John.
My initial support of the chan...Good points John. <br /><br />My initial support of the changes was based upon the same fallacy.<br /><br />So, they take away the word "Aspergers" and diagnose the "worst afflicted" of us with Autism.<br /><br />Then they invent a new word to describe the rest of us while withdrawing support.<br /><br />Surely it would be simpler to leave the word and definition "as is" and simply reclassify the "worst afflicted" with with something which better reflects their needs?<br /><br />Bureaucracy at its finest.Gavin Bollardhttps://www.blogger.com/profile/13833941398375568706noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-91437303166311511152012-02-08T00:55:40.937-05:002012-02-08T00:55:40.937-05:00I am a member of two Asperger support groups on Fa...I am a member of two Asperger support groups on Facebook and members are completely upset by the proposed cutbacks. When the recent NY Times article published, I, among other members posted the servile and the overall response was outcry and fear. My son has AS and is 3 and 1/2 and I will fight tooth and nail to have any services removed. I placed him in two private preschools taughted for their excellence prior to his diagnosis, and it was clear that he is not able to thrive in a typical classroom environment without much one on one assistance. I have two sister in laws who are teachers, and they already complain about the increasing number of kids per classroom and feeling more like baby sitters than teachers. I could not imagine adding more demands on these teachers by placing kids in their classroom which require much one on one contact. The end result would be disruptive to the teacher and disastrous on the child, as he or she will be labeled as a trouble maker or not be able to learn what is required from them. The system of special services and/or aides works for the kids and teachers. Why disrupt a system that has proven successful? I envision continuing outrage and resistance to the proposed cutbacks.Loulu74https://www.blogger.com/profile/02111000426046055495noreply@blogger.com