Comments on: Very Late Diagnosis http://www.blisstree.com/articles/very-late-diagnosis/ Family, Health, Home and Lifestyles Mon, 21 Dec 2009 01:48:40 -0500 http://wordpress.org/?v=2.8.4 hourly 1 By: B M http://www.blisstree.com/articles/very-late-diagnosis/comment-page-1/#comment-565277 B M Thu, 14 May 2009 08:57:25 +0000 http://www.autismvox.com/very-late-diagnosis/#comment-565277 I believe a person who gets an adulthood diagnosis and has graduated from university in the UK will recieve little if any support because in the UK people think if a person is clever support is not needed In reality, in the UK, if a person cannot use their degree (it is estimated that 90% of people of working age are underemployed, over 75% unemployed), they will have great difficulties securing long term stable employment. There is so much support for children and adults who have a childhood diagnosis but the people who are classed as the lost generation might as well forget about the future. I believe a person who gets an adulthood diagnosis and has graduated from university in the UK will recieve little if any support because in the UK people think if a person is clever support is not needed

In reality, in the UK, if a person cannot use their degree (it is estimated that 90% of people of working age are underemployed, over 75% unemployed), they will have great difficulties securing long term stable employment.

There is so much support for children and adults who have a childhood diagnosis but the people who are classed as the lost generation might as well forget about the future.

]]> By: B M http://www.blisstree.com/articles/very-late-diagnosis/comment-page-1/#comment-565278 B M Wed, 13 May 2009 10:53:41 +0000 http://www.autismvox.com/very-late-diagnosis/#comment-565278 I had a non-standard diagnosis of AS in Feb 2004 at the age of 25. I achieved a degree and a postgrad qualification without a diagnosis. I live 30 miles from London. I was given almost no post diagnostic support. I am over-qualified for non-graduate jobs. I wanted a career related job which my mother wants me to achieve. I have very mild AS. I have been working in temporary jobs including working in a call centre for 11 months. I cannot travel to London because of the transport time and costs but there are fewer opportunities.A person who has more severe AS is more likely to get support. Graduates with AS spells dreadful problems. I had a non-standard diagnosis of AS in Feb 2004 at the age of 25. I achieved a degree and a postgrad qualification without a diagnosis. I live 30 miles from London.

I was given almost no post diagnostic support. I am over-qualified for non-graduate jobs. I wanted a career related job which my mother wants me to achieve. I have very mild AS. I have been working in temporary jobs including working in a call centre for 11 months. I cannot travel to London because of the transport time and costs but there are fewer opportunities.A person who has more severe AS is more likely to get support. Graduates with AS spells dreadful problems.

]]> By:   Have anybody heard of the students with asperger syndrome website thst Clare Sainsbury has started? by AlphaWu’s Blog@WordPress http://www.blisstree.com/articles/very-late-diagnosis/comment-page-1/#comment-539568   Have anybody heard of the students with asperger syndrome website thst Clare Sainsbury has started? by AlphaWu’s Blog@WordPress Sun, 02 Sep 2007 06:22:20 +0000 http://www.autismvox.com/very-late-diagnosis/#comment-539568 [...] http://www.sagepub.co.uk/authordetails.n… http://aut.sagepub.com/cgi/reprint/6/2/2… http://www.autismvox.com/very-late-diagn… [...] [...] http://www.sagepub.co.uk/authordetails.n…; http://aut.sagepub.com/cgi/reprint/6/2/2…; http://www.autismvox.com/very-late-diagn…; [...]

]]> By: Shannon http://www.blisstree.com/articles/very-late-diagnosis/comment-page-1/#comment-534776 Shannon Tue, 29 May 2007 22:32:47 +0000 http://www.autismvox.com/very-late-diagnosis/#comment-534776 Kristina, Thank you for your concern and information. I just found this site (last night) and it has been therapeutic for me. I no longer feel so alone. I only wish that I could share this feeling with my brother (sooner than later). I explained my brother's complicated situation in a response message to Joe. My heart and spirit are breaking.. through this site, I am finding relief...I am not in the UK, but I would take my brother there if I could.. Shannon Kristina,
Thank you for your concern and information. I just found this site (last night) and it has been therapeutic for me. I no longer feel so alone. I only wish that I could share this feeling with my brother (sooner than later). I explained my brother’s complicated situation in a response message to Joe. My heart and spirit are breaking.. through this site, I am finding relief…I am not in the UK, but I would take my brother there if I could..
Shannon

]]> By: Shannon http://www.blisstree.com/articles/very-late-diagnosis/comment-page-1/#comment-534797 Shannon Tue, 29 May 2007 21:13:19 +0000 http://www.autismvox.com/very-late-diagnosis/#comment-534797 Joe, Thank you for your interest and response to my message. It was late last night when I wrote the situation regarding my brother. I reread my message and can see that it appears very vague and confusing. I am impressed with your charachter, determination, and perserverance. I wish my brother could be more like you. Unfortunately, my brother's situation has been complicated because of his desire to self medicate with alcohol. Professionals have turned him away and labeled him as a "homeless drunk", even despite his obvious neurological handicap as a child (according to school records and psych-evals), Through additional trauma (because of inappropriate social behavior on the streets) and misprescribed anti-psychotic medications to keep him sedated during his numerous incarcerations (for inappropriate social behavior), his level of functioning has decreased. This morning he was given a three year prison term for stealing alcohol from a store (666PC because repeated offense). Even though I am a professional social worker (earned my degree to help my brother), I have not been able to influence assistance or treatment on his behalf. Professionals evaluating him so far have little knowledge of aspergers, or only limited experience in working with children (w/aspergers). My brother (born 1967) is much different as an adult then he was as a child. He appears even more "normal" as an adult then when he was a child. He has learned better how to respond appropriately to social ques (whether or not he understands what is being said). He has a style of mimicking a person across from him and can even give the appearance of a professional himself (when sitting across from a professional). It's only when we walk away that my brother will ask how he did, and ask me to explain what the person was saying to him. He continues to exhibits repetitive behaviors that he had as a child. One he calls "twiddling his hair". He does this behavior when he is excited or stressed and it entails him taking a strand of hair and tying it into a knot, then pressing it on his head. I have pictures of his finger nails (peeled back and bruised) due to this repetitive behavior. In addition, he maintains odd obsessions with watches, mountain bikes, and Toyota's. A childhood psych-eval documented his severe deficit in motor skills and "nine out of eleven errors on Bender designs indicating neurological impairment". It also documents moments of strange "chanting and whistling" behavior. This is funny because my brother would always talk to me with his own created accent, and he developed a communication through whistling that I (one year younger) grew to understand. Each whistle sequence (in tones) had meaning (greeting, thankful, hurt feelings etc.). I'm sure that IQ's and functioning ability can vary between each individual with Aspergers, but some distinguishing characteristics remain similar. I remember back on several individuals (I felt sure had Aspergers) who were geniuses in their area of interest, and a great assistance to me while obtaining my higher education. My brother's IQ was documented as "80" on one eval, but if you ask my brother a question about Mountain Bikes (or watches etc), he can tell you every make, model, and significance all the way down to each part and it's purpose. I held back my tears today as the Bailiff scolded my brother as he entered the court room (in chains) and repeating several "Hi's" and "I love you's'" to me. The judge gave me an opportunity to talk, even after saying that it would have no influence on his decision (three year prison term). I explained that my brother has Aspergers, and listed the documents recently discovered on my brother as a child. I asked that if nothing else, he ensure that my brother receives the proper treatment while in prison. The judge appeared to have compassion as he gave me an unusual amount of time to speak, however (like everytime and everyone before) he told me to hand my information to another party (the prison). I am in the process of writing a book titled, "Where's Eric?". The title is based on a kinesthetic family drawing that my brother did during a psych eval as a child. My brother did not include himself in the drawing and the therapist documents that question (Where's Eric?", and my brother's response, "I don't know, he's not there". My hope is to change that for Eric. Your message gave me incentive Joe...Thank you... Shannon Joe,
Thank you for your interest and response to my message. It was late last night when I wrote the situation regarding my brother. I reread my message and can see that it appears very vague and confusing. I am impressed with your charachter, determination, and perserverance. I wish my brother could be more like you. Unfortunately, my brother’s situation has been complicated because of his desire to self medicate with alcohol. Professionals have turned him away and labeled him as a “homeless drunk”, even despite his obvious neurological handicap as a child (according to school records and psych-evals), Through additional trauma (because of inappropriate social behavior on the streets) and misprescribed anti-psychotic medications to keep him sedated during his numerous incarcerations (for inappropriate social behavior), his level of functioning has decreased. This morning he was given a three year prison term for stealing alcohol from a store (666PC because repeated offense). Even though I am a professional social worker (earned my degree to help my brother), I have not been able to influence assistance or treatment on his behalf. Professionals evaluating him so far have little knowledge of aspergers, or only limited experience in working with children (w/aspergers). My brother (born 1967) is much different as an adult then he was as a child. He appears even more “normal” as an adult then when he was a child. He has learned better how to respond appropriately to social ques (whether or not he understands what is being said). He has a style of mimicking a person across from him and can even give the appearance of a professional himself (when sitting across from a professional). It’s only when we walk away that my brother will ask how he did, and ask me to explain what the person was saying to him. He continues to exhibits repetitive behaviors that he had as a child. One he calls “twiddling his hair”. He does this behavior when he is excited or stressed and it entails him taking a strand of hair and tying it into a knot, then pressing it on his head. I have pictures of his finger nails (peeled back and bruised) due to this repetitive behavior. In addition, he maintains odd obsessions with watches, mountain bikes, and Toyota’s. A childhood psych-eval documented his severe deficit in motor skills and “nine out of eleven errors on Bender designs indicating neurological impairment”. It also documents moments of strange “chanting and whistling” behavior. This is funny because my brother would always talk to me with his own created accent, and he developed a communication through whistling that I (one year younger) grew to understand. Each whistle sequence (in tones) had meaning (greeting, thankful, hurt feelings etc.). I’m sure that IQ’s and functioning ability can vary between each individual with Aspergers, but some distinguishing characteristics remain similar. I remember back on several individuals (I felt sure had Aspergers) who were geniuses in their area of interest, and a great assistance to me while obtaining my higher education. My brother’s IQ was documented as “80″ on one eval, but if you ask my brother a question about Mountain Bikes (or watches etc), he can tell you every make, model, and significance all the way down to each part and it’s purpose. I held back my tears today as the Bailiff scolded my brother as he entered the court room (in chains) and repeating several “Hi’s” and “I love you’s’” to me. The judge gave me an opportunity to talk, even after saying that it would have no influence on his decision (three year prison term). I explained that my brother has Aspergers, and listed the documents recently discovered on my brother as a child. I asked that if nothing else, he ensure that my brother receives the proper treatment while in prison. The judge appeared to have compassion as he gave me an unusual amount of time to speak, however (like everytime and everyone before) he told me to hand my information to another party (the prison). I am in the process of writing a book titled, “Where’s Eric?”. The title is based on a kinesthetic family drawing that my brother did during a psych eval as a child. My brother did not include himself in the drawing and the therapist documents that question (Where’s Eric?”, and my brother’s response, “I don’t know, he’s not there”. My hope is to change that for Eric. Your message gave me incentive Joe…Thank you…
Shannon

]]> By: Kristina Chew, PhD http://www.blisstree.com/articles/very-late-diagnosis/comment-page-1/#comment-534802 Kristina Chew, PhD Tue, 29 May 2007 20:14:44 +0000 http://www.autismvox.com/very-late-diagnosis/#comment-534802 Thanks Joe-----Shannon, if you are in the UK, there is the <a href="http://www.autismresearchcentre.com/clinical/class.asp">Cambridge Lifespan Asperger Syndrome Service (CLASS) </a>, a clinical service for adults with Asperger Syndrome---it provides diagnostic services for adults who may have Asperger. Thanks Joe—–Shannon, if you are in the UK, there is the Cambridge Lifespan Asperger Syndrome Service (CLASS) , a clinical service for adults with Asperger Syndrome—it provides diagnostic services for adults who may have Asperger.

]]> By: Joe http://www.blisstree.com/articles/very-late-diagnosis/comment-page-1/#comment-534825 Joe Tue, 29 May 2007 16:26:25 +0000 http://www.autismvox.com/very-late-diagnosis/#comment-534825 Shannon, I can understand the issues your brother is having, but AS or not he still have to do some of the work himself. One key thing he needs is a diagnosis on paper. What you need to find first is a neurologist or neuro-psychologist that specializes in or at least have experience in diagnosing adults on the spectrum. This will be the starting step. Where it goes from there will depend on where you are at. Some places have government services that can help him get on his feet, others he may need to lean on you while he finds a job and his own place to live. But if he's been unable to hold down a job in the past, then odds are he'll need advice on what accomodations he needs to stay employed and he needs the piece of paper that requires someone to supply them under the ADA (this of course is assuming that you are in the US.) BTW, I'm 35 and didn't get diagnosed until last year. I've been able to hold down a job for most of my adult life, but often staying employed has been painful. Until I heard about AS I had no idea what was going on and thought something was wrong with me. I now know otherwise and have been doing much better now that I know what's going on and what it means and how to work with it. Shannon,

I can understand the issues your brother is having, but AS or not he still have to do some of the work himself. One key thing he needs is a diagnosis on paper. What you need to find first is a neurologist or neuro-psychologist that specializes in or at least have experience in diagnosing adults on the spectrum. This will be the starting step.

Where it goes from there will depend on where you are at. Some places have government services that can help him get on his feet, others he may need to lean on you while he finds a job and his own place to live. But if he’s been unable to hold down a job in the past, then odds are he’ll need advice on what accomodations he needs to stay employed and he needs the piece of paper that requires someone to supply them under the ADA (this of course is assuming that you are in the US.)

BTW, I’m 35 and didn’t get diagnosed until last year. I’ve been able to hold down a job for most of my adult life, but often staying employed has been painful. Until I heard about AS I had no idea what was going on and thought something was wrong with me. I now know otherwise and have been doing much better now that I know what’s going on and what it means and how to work with it.

]]> By: Shannon http://www.blisstree.com/articles/very-late-diagnosis/comment-page-1/#comment-534881 Shannon Tue, 29 May 2007 07:45:39 +0000 http://www.autismvox.com/very-late-diagnosis/#comment-534881 My brother is 40 years old and has Aspergers. In desperation for his help, I've completed a masters degree in Psychology. Still, he remains homeless or incarcerated, and rejected to any assistance. The rejection that we have faced in the last 20 years has been almost too much to take. I recently located a lost file on my brothers school records. This file also contains documents that include his being admitted into a diagnostic school for neurologically handicapped children, and critical psych-evals that describe in painful detail the diagnostic criteria for Aspergers. Unfortunately for my brother, this was before 1980. Presenting this information has gotten us nowhere. I am desperate for his help as he is losing his fight for reason to live. Please Help.. Shannon My brother is 40 years old and has Aspergers. In desperation for his help, I’ve completed a masters degree in Psychology. Still, he remains homeless or incarcerated, and rejected to any assistance. The rejection that we have faced in the last 20 years has been almost too much to take. I recently located a lost file on my brothers school records. This file also contains documents that include his being admitted into a diagnostic school for neurologically handicapped children, and critical psych-evals that describe in painful detail the diagnostic criteria for Aspergers. Unfortunately for my brother, this was before 1980. Presenting this information has gotten us nowhere. I am desperate for his help as he is losing his fight for reason to live. Please Help.. Shannon

]]> By: Rochelle http://www.blisstree.com/articles/very-late-diagnosis/comment-page-1/#comment-534024 Rochelle Sat, 28 Apr 2007 20:16:16 +0000 http://www.autismvox.com/very-late-diagnosis/#comment-534024 Hi, harmonious1-- I hope you'll keep coming back here to read and comment. I have found this blog to be very therapeutic as I have come to deal with my son's diagnosis. Maybe you'll find some peace and comfort reading the stories so many adults w/ autism share here. I know, for me, it's comforting to read the comments of articulate, thoughtful, and intelligent adults on the spectrum--like Zaecus's that you, also, noted. I hope it brings a little bit of relief from the depression you mentioned. Also, I hope you remember that you have the choice to seek a diagnosis or not. One positive aspect to consider is that because you're 50 years old, you can share as much or as little as you like. You can choose to identify yourself as someone on the spectrum or not. And, you can choose to share that information when it's relevant and/or beneficial or not. It's your business to share how much you'd like. It's nice to meet you and I hope you find some peace and camaraderie here. Hang in there... Hi, harmonious1–

I hope you’ll keep coming back here to read and comment. I have found this blog to be very therapeutic as I have come to deal with my son’s diagnosis. Maybe you’ll find some peace and comfort reading the stories so many adults w/ autism share here. I know, for me, it’s comforting to read the comments of articulate, thoughtful, and intelligent adults on the spectrum–like Zaecus’s that you, also, noted. I hope it brings a little bit of relief from the depression you mentioned.

Also, I hope you remember that you have the choice to seek a diagnosis or not. One positive aspect to consider is that because you’re 50 years old, you can share as much or as little as you like. You can choose to identify yourself as someone on the spectrum or not. And, you can choose to share that information when it’s relevant and/or beneficial or not. It’s your business to share how much you’d like.

It’s nice to meet you and I hope you find some peace and camaraderie here. Hang in there…

]]> By: harmonious1 http://www.blisstree.com/articles/very-late-diagnosis/comment-page-1/#comment-534007 harmonious1 Sat, 28 Apr 2007 16:35:36 +0000 http://www.autismvox.com/very-late-diagnosis/#comment-534007 I read this article with tears in my eyes. I suspect that I have AS and that it is the explanation for my difficulties with people, jobs, friends, marriage, and just understanding the world I live in. I really don't know whether I want a formal diagnosis, for the reasons that Zaecus discusses in the comment above. Sounds scary. I have been depressed since discovering that my weirdness has a name (I think), and I don't even understand that. I hunger for someone safe to talk to about this, maybe someone else like me, now that I know they do exist. I am 50 years old, and feel that life has been so difficult, and confusing. I feel like Reid (last name??) in that poem, (I read it on this site I think) where all my peers are retiring, and I'm still aching to take off. I read this article with tears in my eyes. I suspect that I have AS and that it is the explanation for my difficulties with people, jobs, friends, marriage, and just understanding the world I live in. I really don’t know whether I want a formal diagnosis, for the reasons that Zaecus discusses in the comment above. Sounds scary.
I have been depressed since discovering that my weirdness has a name (I think), and I don’t even understand that.
I hunger for someone safe to talk to about this, maybe someone else like me, now that I know they do exist.
I am 50 years old, and feel that life has been so difficult, and confusing. I feel like Reid (last name??) in that poem, (I read it on this site I think) where all my peers are retiring, and I’m still aching to take off.

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