Very Late Diagnosis
April 3, 2007 by Kristina Chew, PhD
Filed under Health
We have recently heard a lot about the very early diagnosis of autism; one sign of “developmental abnormality” is (as yesterday’s MedPageToday” notes) an infant who, by the age of one, does not respond to her or his name. Simon Baron-Cohen, director of the Autism Research Centre at Cambridge University, notes something quite the opposite, the “very late diagnosis” of Asperger’s Syndrome in adults in Very late diagnosis of Asperger Syndrome: The Cambridge Lifespan Asperger Syndrome Service (CLASS). The article can be found on the Interactive Autism Network (IAN) website.
Baron-Cohen describes a “lost generation” of adults with AS who did not know what diagnosis they have—who did not know that what they have even existed. It was 25 years ago that Lorna Wing published an article on AS—which “the English-speaking medical profession had barely heard of”; the first book in English on AS was only published 15 years ago, by Uta Frith in 1991; it then “took until 1994 for the international classification systems that define how a diagnosis is made to recognize the existence of AS.” It is not that AS did not exist before it was identified and defined; what we now call “AS” was not even known as a distinct diagnosis until very recently.
Baron-Cohen describes the “lost generation of AS”:
All through their school years they had trouble making friends or fitting in. Many were bullied by the other children, both physically and verbally. Many felt, in Claire Sainsbury’s chilling words, like “an alien in the playground”. (This is the title of her excellent book). The lucky ones managed to stay in school long enough to get their SATs, and some got to university. But not without feeling their teens were an uphill struggle. By young adulthood many had suffered clinical depression and even felt suicidal. All because their underlying condition of AS had gone unrecognized and therefore unsupported. Some of them had enjoyed the closeness of an intimate relationship only for this to break down. Some had found employment only for them to run into problems in the work place through not understanding what the employer and other staff might expect of them, or through getting into conflict, or being passed over for promotion because of their lack of team skills.
………………
And then – somehow – they heard that AS exists. Maybe through a newspaper article, or a website, or in a poster on the wall in the GP/Health Centre waiting room. And for many of them, they describe that moment of feeling: “This is me”. Coming to the CLASS [Cambridge Lifespan Asperger Syndrome Service] clinic for many is a process of confirmation of their own self-diagnosis.
Those who come to the clinic are to bring someone who knew them as a child—-as a parent “so that a diagnosis can be made not only using information from the patient themselves, but also from an independent observer.” The CLASS clinic only provides a diagnosis; a report is sent to the person’s doctor and recommendations made (to contact the National Autistic Society for support groups, sheltered employment, etc.). Baron-Cohen writes that the diagnosis is itself a “form of intervention”—in many cases, though, doctors do not follow up on the CLASS’s report and “the person with AS may be left floundering, their needs still as unmet as they were in their school days”: We have still a long way to go, Baron-Cohen notes.
I have posted previously about someone who was 22 years old when he received an AS diagnosis, and about someone who was 73 years old, as well as on the “relief” some feel when they finally receive a diagnosis or label that names their “difference.” I can think of at least one good friend of ours who only attended college (engineering school) for a few weeks and is a lifelong caddy.
Is the attention now being given on “very early autism diagnosis” and “late autism diagnosis” a sign of our need to “catch” and detect all the autism everywhere? To count every possible case so that we might have the most accurate prevalence rate for autism possible? To try to make up for years of misunderstanding by showing how much we do understand, and are trying to? To acknowledge that, just as there are more autistic children, there are more autistic adults than previously thought?
In light of the just-lauched Interactive Autism Network (IAN)—which so far is focusing on research for families with children under 18—-I was especially interested to see Baron-Cohen’s article on very late diagnosis of Asperger Syndrome on the IAN website. As Baron-Cohen writes at the end of his article,
We are still a long way away from what should be an expectation by families and by those with AS: that after someone receives a diagnosis of AS – at any age – the system picks up that person and puts together an appropriate package of support for them.
And should not that support be offered regardless of the age at which a person is diagnosed as being on the autism spectrum—–and should not that support involve recognizing how the experiences and views of autistic adults can inform and enrich research and understanding about autism?
The input of autistic adults is extremely important. Most would not think of research on any other problem without getting input for people who have the problem. Autistic adults I feel are a tremendous asset that is frequently overlooked, who better to speak on autism than someone who has it. I think we should certainly try to identify everyone on the spectrum to get abetter picture of what autism is and the true numbers of people who have it. Better understanding is exactly why there has been an increase in the numbers of people with the diagnosis. I truly believe that 10 or 15 years ago my daughter would have been just considered quirky or odd and not autistic, but today we know better. Since we know better now it is time to do better include everyone and really research everyone who has autism and with the input and assistance of those adults who have it.
The title of Claire Sainsbury’s book is “Martian in the Playground”. I really should track it down and read it.
And her name is Clare Sainsbury.
Sad thing is, when I tried to give my opinion and input to my congressman about the “Combating Autism Act” the first response I received was borderline insulting and the second almost dismissive. Turns out he was one of the authors of it and I suspect that he didn’t want to hear from an autistic that disagreed with the stated goal.
I don’t think he got my message of needing support and understanding, not a cure.
Here’s to hoping they start to listen to us and maybe even value our input. I’m not going to hold my breath.
I found out about Asperger’s Syndrome in 1996, and quickly ran into all of the marginalizing and downright discriminatory rhetoric already out there, including no small number of stories on chat boards by those who had received blatant discrimination after getting a diagnosis; having the judge rule against them in a divorce because of it, getting fired when they reported it to HR, etc.
This was only -two years- after it had gone into the DSM, and I -knew- it applied to me because I’d already spent the previous 10 years cataloging my differences and studying the natives in an attempt to fit in. Reading all of this, I decided getting a diagnosis was probably the worst thing I could do, and avoiding one would save me a lot of discrimination.
I was finally diagnosed in early 2006 because not having a diagnosis wasn’t enough to keep me from getting discriminated against. The counselor decided I didn’t deserve confidentiality, and the Dean decided I didn’t deserve respect.
Now that I’ve got a diagnosis, I have yet to encounter anyone in the system who feels I deserve dignity much less assistance.
P.S. Forgot to mention that I’ll be 37 this year.
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.
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…
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
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.
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.
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
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
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 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.