After Many Years, A Diagnosis
October 12, 2008 by Kristina Chew, PhD
Filed under Health
Deborah Lipsky was in her 40s when she found out that has autism, today’s Carroll County Times notes. Others have described getting diagnosed with Asperger’s Syndrome in their 50s; Nicky Gottlieb was 21 when he was diagnosed, after his sister, Lizzie Gottlieb, started to make a documentary about him, Today’s Man. When claims of a recent and dramatic increase in the autism rate are used as evidence for an “epidemic of autism,” the question is asked about where are all the adults with autism. Psychology professor Simon Baron-Cohen has written about the very late diagnosis of autism:
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.
And some parents, having found out their own child’s diagnosis on the autism spectrum, have sought their own diagnosis.
Of Deborah Lipsky, the Carroll-County Times notes:
In Lipsky’s case, her diagnosis has helped her develop coping strategies for the social and emotional problems she had suffered since she was a child. In 2005, she offered her story to a national seminar company and was given the job that has led to her success today.
Lipsky said she views autism as a cultural difference rather than a disease, and wants other people to share her outlook.
“I’m trying to train the next generation of service providers to look at the gift and not the limitations,” she said.
Or rather, gifts……….
I agree completely with the last sentence.
However, it brings me back to wondering more about:
“international classification systems that define how a diagnosis is made to recognize the existence of AS.”
What precisely, within that classification system, determined her diagnosis of Autism versus Aspergers Since she is so high-functioning, what kind of education and parental direction did she receive that led her to such a lesser degree of the disorder? And, with all due respect, if she’s only recently discovered the world of Autism because of the diagnosis, how can she speak for the entire community?
I don’t mean to be confrontational as I do generally appreciate Autistic adults’ perspective. But, I will admit… sometimes I get cynical.
I’m not sure my son—-who is now described as having “classic autism”—-would have been diagnosed with autism in previous generations. He may have gotten, instead, a diagnosis of mental retardation and behavioral disorder; he’s needed a lot of specialized teaching. I really think that autism has always existed, and that it’s only recently become a formal diagnosis that can be given and talked about.
I gather that, in the next revision of the DSM, there’s been talk about autism and Asperger’s being separate diagnoses.
For myself, I’ve found the concept of the “autism spectrum” very important .
I understand the concept of “Autism spectrum.”
What I don’t have faith in, is the current Autism spectrum criteria and, more importatnly, lack of synonymous diagnoses among individual evaluations. (i.e. PDD-NOS versus Sensory Intergration Disorder versus mild Autism)
If Aspergers is being considered as an alternate diagnosis or being separate from Autism spectrum — then, I truly belive classic Autism should be distinguished as such.
I like this article: http://www.mugsy.org/wing.htm
I’m completely convinced that I’m on the spectrum (at age 40). Both of my daughters are on the spectrum (both ends) and when I was researching Asperger’s I felt like I was reading about myself. It’s funny, I never knew you were supposed to look people in the eye when talking to them (I tend to look past people or at their feet) until my daughters’ therapists said that was something they needed to work on. It explains all the challenges I’ve had in my life.
However, I don’t plan on getting myself officially diagnosed. I can think of lots of disadvantages (like spending money on getting a diagnosis), but what would be the advantage?
I’ve had the pleasure of meeting Deborah Lipsky here in Maine at meetings. She has quite a story to tell, and she has written some interesting and informative articles for our state Autism Society magazine.
I was dx’d later in life. I wasn’t lost though. No one speaks for everyone, although some claim to. I knew I was on the autism spectrum after reading about autism, then got a dx because people told me that no one would believe I was on the spectrum if I didn’t have an official dx. So I got the official. That didn’t change much. The one thing that has come of me learning about being autistic is that I am more comfortable with myself and largely accept myself for who I am. I’ve quit listening to those who don’t like me the way I am, unless someone says something that I can use to my advantage. I haven’t run out and spent a lot of money on therapy or eye contact lessons. Some people might benefit from that, but I’ve taken the POV that as long as I am not harming someone else, I can go ahead and explain to them *why* I don’t use as much eye contact, or why I am doing other things I do. I get to be myself more and they get to learn something. Recently someone who has known me for decades watched as I spoke to a group of people about autism He said he had never seen me be that comfortable in front of a group of people before. And I was. I was not trying to control my body movements or my eye contact or trying to fit in. I was just being myself, and therefore about 100% more effective in talking with them.
I like the notion of autism being a cultural difference instead of a disease.
It’s a false dichotomy. Two pitched camps, one saying it’s a disorder, the other saying it’s a cultural difference.
The truth is that it can be either, or both.
The point that everyone keeps missing is this:
There is a fundamental need, in order to make any sense out of autism, to distinguish between autistic ways of being (sensory, social, aesthetic needs and preferences, often at variance with the majority’s), and disability concomitant with autism.
The way forward is to work to mitigate the latter while preserving, protecting, and making room for the former.
i’m going to turn schwarz’s comment into a bumper sticker. it will wrap around my entire car, but still.
also, for “concomitant”, he wins the Word Usage Gold Star of the Day. a shocking upset since dr. chew has won this award for the past 77 days in a row.
I gladly concede the award to Phil Schwarz!
Must forthwith get to work on my diction though…….. I am in admiration, too, of that use of “concomitant.”
My daughter’s best friend was finally diagnosed with Aspergers a year ago.
Lovely girl.
She slept over on Saturday night.
Made the girls eggs on toast for breakfast.She was so happy, doesn’t usually get that for breakfast. (Her mom is a gorgeous easy going lady, and we get on really well.)
As you know Kristina, Mark my daughter’s brother is autistic.
A few years ago my daughter developed a friendship with a boy in her class.. He was autistic.
What do you think of that, eh?
She was saddened when they moved to another town, and she lost her friend.
Perhaps she is just in tune.
She really adores her brother.
Or, maybe it’s just a case of, a little autism in all of us?
yes to both— tune and “a little autism” in us all………
Yes, thanks for “concomitant,” Phil. I’ve added it to the neutral words glossary I posted two years ago, as a substitute for “comorbid.”
RE: Natalie’s post regarding cynicism towards Deborah Lipsky. Sometimes, people are just different, but it doesn’t mean they don’t have a special insight.
I was reading at 3, doing quadratic equations at 7. I’m not THAT smart, my IQ is in the mid-130s, same as both of my sons. But I used to know things that I would have to work at now. When I was seven, I lived on Long Island and there was an article in Newsday regarding Autism. This would have been 1982, back when Autism had much stricter guidelines. My mother said, “Wow, Kim, if you weren’t so smart, I would think you were autistic.” She doesn’t remember this conversation, but I do. I remember many entire conversations word-for-word. At 11, I was tested for epilepsy because I lived inside my mind. I also developed severe anxiety disorder. Recently with Google Maps Street View, I was goofing around and within ten minutes found the house I lived in in Lindenhurst, NY, when I was six. I didn’t remember the address, but I remembered the immediate area (intersection, lane size, etc.)and instantly recognized the house. I haven’t seen the house in 27 years. I currently work from home. It is rare that I panic about leaving the house and interacting with others anymore, but I am just happier working at home. I have lived through and am an excellent advocate for my sons. BTW, I did not receive special help. My parents loved me, but often thought I was on drugs due to my emotional upheaval.
My older son (after 2 years on a waiting list) saw a developmental specialist at Strong Memorial Hospital in Rochester, NY. He received a diagnoses like this, “According to previous test results this child qualified as PDD-NOS, but I am currently seeing more hyperactivity.” Is that a diagnosis? No. At three/four, Reece had a vocabulary of approx. 100 words, yet he could recognize cars in a spooky way. My father would get a new same model car from work ever two years. We could drive down the expressway and hear “Grandpa’s car,” “Grandpa’s old car.” He’d be right. Reece spent two years with a 1/1 aide (after two years of developmental preschool). He has had five years of speech, five years of OT and four years of PT. Couldn’t read until he was eight, and still has atrocious handwriting as his fine motor skills are pretty bad. He’s currently 11, without an IEP and completely mainstreamed (although his emotional maturity is starting to become an issue). I believe he has SPD. Aiden, my 8yo, was only diagnosed PDD-NOS last year. He has excellent motor control skills and speech ability. I always thought his “autistic” traits were habits he had learned from his brother. However, his sensory integration difficulties are such that he cannot be in a classroom with more than six other children without getting completely overwhelmed, angry and violent. Now that we have truly been helping his sensory stuff, he has begun stimming (spinning, humming, etc.) to calm himself, stuff he had never done previously.
I mention this as I have never had a diagnosis; I don’t know that I would get one. However, I can explain to the school that Aiden hates gym because he can feel his whole body moving and he cannot always figure out where everyone is or what he should be doing because the people are so spread out and there is so much stimulation. By the time, he processes that he can do something, he is too late to be successful at it. Both of my boys want to succeed, even if they don’t always understand success (Neither of them seemed to understand the grading system until they were 6 or 7). I can explain to Reece’s teacher that a nickname like “Dustbunnies” for a child with horrible organizational skills and a high rate of daydreaming may be appropriate for some kids, but will break his heart and cause him to shut down or flip out. I think sometimes High Functioning Autistics who have reached a new developmental peak are the perfect people to protect and speak for those that cannot express for themselves.
“Lost” generation? I don’t think so. More like “discovered” generation. And how about the thousands who lived with undiagnosed AS in previous centuries. I self-diagnosed at almost 70, grateful to have the last few pieces of my personal puzzle drop into place so easily. But I worry about the current diagnosed generation and those to come. Granting that many people do need help and counseling, I’m beginning to wonder whether the emphasis on diagnosis and services isn’t contributing to learned helplessness in some cases. I’m not an advocate of the stiff upper lip philosophy, but there is something to be said for figuring things out for yourself and then finding ways to cope and adjust.
Dear Catana…
I agree that eventually you have to figure things out for yourself. I think the biggest difficulty with diagnoses today is that individuals without a diagnosis have NO excuse for not being exactly like everyone else. Acceptable society has become very streamlined and narrow. What was, in previous generations, character or eccentricity is now a disability
Another positive to diagnosis is that it makes teachers and parents spend more time actually paying attention to how their child functions. That child Knows he is cared about. It is kind of a level of forced caring 
You’re right, Kimberly. Diagnosis can make a big difference for some, especially the young. But I hate to think that it requires a diagnosis simply to be different from the norm. Maybe an early diagnosis and some guidance can give young people the basis they need for standing up for theselves and living the kind of life that’s right for them when they’re older.
“I like the notion of autism being a cultural difference instead of a disease.”
This is somewhat along the lines of some research that I am doing as part of my studies at a polytechnic up-country in Finland. Not quite a cultural difference, per se, but certainly as a para-cultural phonomenon… ‘being autistic’ certainly – when you compare that with definitions of culture – you get a sense of it having a high degree of cultural functionality. Olga Bogdashina scratched the surface of this in one of her books. Got to say though… Phil’s description goes straight to the point that I wish I’d been able to verbalise myself: the notion of disability being a concomitant issue is one that finds a great deal of support from me.
“I’m not THAT smart, my IQ is in the mid-130s, same as both of my sons.”
If that IQ is based on a mean score of 100 and a standard deviation of 15, then – yes – it does translate into educational parlance as pretty smart: it’s above the 98th percentile.
However, as I am very well aware, high IQ and ’smart’ do not necessarily equate. Much depends on the kind of ’smart’ that we’re considering.
I was just diagnosed,at 48.The paperwork for this,states,that while I am not in a position currently,where I have classical Kanner autism, that I no doubt did as a child.
Based on the history,my mother,and I were able to give,the residual learning disabilities I still have,the extent of permanent damage,from developmental disabilities,my pituitary hypogonadism,and the severe,systemic autoimmune conditions,and recurring acute infections,I have had continually, since childhood.
My official diagnosis,is an idiopathic ASD,that is somewhere on the spectrum,between Asperger’s, and classic Kanner autism,and is not PDD-NOS. My Dx takes three whole sentences!
I had received multiple diagnoses in the past, from psychiatrists,psychologists,and plain old Mds,which included the classics,of “childhood schizophrenia”,”childhood psychotic disorder”, and schizotypal personality disorder.None of which,were made taking my developmental problems into account.
For me,a diagnosis is very important.It means, my lupus-like autoimmune syndrome,and my atypical seizure disorder,will finally be taken seriously.The neuropsychiatrist,who diagnosed me,said I may be the first real case,of purely autoimmune/genetic autism,as my mother,is able to clearly say it began,after my first,of several, bout of acute bacterial meningitis,I had as a baby.
I hope to find a way to put the knowledge I have accumulated over the years,in my search for a diagnosis,to use.Perhaps working for a hospital,or foundation,and doing my best,as an activist,to dispel the dangerous lies,and fraudulent insanity, put out by both the neurodiversity,and autism=mercury/vaccine damage camps.
Those who were born after Kanner’s original findings,and before the 1990s,really are,not one,but two lost generations.I am glad I was able to live to see it rectifed.
Thank you for writing this here Roger—thank you.
WOW Roger. I am excited for your future! I hope you can do wonderful things with what you have experienced. When I say that, I also mean your mother. It is pretty darn impressive and representative of her parenting that she is able to offer those insights.
Catana! I love the way you described your hopes. I feel the same way; it is why I am SO determined to build-up my children and make them feel secure in themselves at home. It is the hope that they can hold onto that security.
David… Please understand that there is a VERY distinct difference that I experienced then watched my son go through. As a child, I could spatially see things in a way that I was “inside” it and knew everything about what I was looking at. Today, I could not do that. I would get lost between the systems of how things work together… if that makes ANY sense
Hi Kristina –
My 62-year-old brother was not formally diagnosed, but everyone who comes into contact with him now, including the helping professionals, agree that he has autism. My brother did have brain damage (oxygen deprivation at birth) and there is a theory that it can cause autism.
You might enjoy this recent post on my brother’s little run-in with a Toronto bus driver who shouted Ladies First at him a few days ago.
http://osolomama.wordpress.com/2008/10/26/ladies-first-how-it-sounds-to-someone-with-autism/
The world doesn’t get easier for people with autism as they grow older but my brother has definitely carved a place for himself. Notice how great his language is.
I also had oxygen deprivation at birth. I’m now 57 years old and just several weeks ago I was formally diagnosed with Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS). I have had so many problems with all of this all of my life and still struggling. After the diagnosis I told my parents. My mother told me that I was diagnosed at 4 years old with mild autism in a hospital in. My parents never told me of this diagnosis all my life until now and I feel like my world has been turned upside down. I also have a seizure disorder with this and currently off medicine because I can only take it on a short term basis. I am in the process of reaching for all the information for adults I can get.
Almost all information about PDD (specifically autism) is geared toward children. I’m finding it terribly hard to find anything out about adults with autism.
Any references to material dealing with adult autism would be appreciated.
Kimberly,
I have been to Strong memorial hospital twice and both times my daughter’s diagnosis was she behaves and presents as a child with an autism spectrum disorder and would benefit from programs for a child on the autism spectrum disorder but at this time a diagnosis is not possible. The problem we are finding with this as she gets older is that ADHD with a communication disorder does not let her teachers and staff at school understand what is going on. Also down the road her father and I have concerns about what services will be available to her since the amount of service available to a child with and ASD and one with ADHD are not even close to the same.
Julie
That is SO frustrating… The worst part is that your daughter may not even be ADHD (I don’t know what tests were done). Reece is NOT hyperactive, but when he is in a large crowd or an uncomfortable situation, he can get hyper. It has more to do with sensory integration… At the Strong Children’s Hospital, you bring a child with sensory integration issues into a 50′x30′ room filled with kids running around, fish tanks and color (if it is the same as when Reece was little), then he is taken to the Dr.s room and examined. OMG, I just realized something! Aiden was two when we met their Dad at Strong for Reece to be tested… Their dad has always flip-flopped on the autism-thing because he wasn’t in the room when the dr. told me to use the title of Autism when dealing with the school. He was walking Aiden around and outside because Aiden went into massive melt-down mode.
There should be more doctors in Upstate NY doing developmental diagnoses. All of his primary care physicians said something was going on with him, but would not commit. His OT and Special Ed teachers were the ones who said to me, “You know he has a lot of autistic features, and he has physical reflexes that are largely seen in autistic children.” In NY, they largely offer services based on needs, so you can still get services.
IF YOU MOVE OUTSIDE OF NY WITHOUT A DISTINCT DIAGNOSIS, ESPECIALLY IF YOUR CHILD HAS HAD SOME LEAPS IN DEVELOPMENT, YOU WILL LOSE HER IEP. That is why Reece doesn’t receive OT. His handwriting is still illegible, but I’m trying to teach him to type
Good Luck Julie
Kimberly,
I agree that she does not have ADHD she gets fidgety and has a hard time staying off the topic of death when she is anxious. He saw this as an attention issue rather than a communication issue. She is receiving great services in Webster schools because the IEP is based on need not diagnosis. My concerns are for once she ages out of the school system if she wanted to attend a college program. We have time since she is in the 3rd grade. I am hoping that there will be more option to go and have her evaluated in the future here. Good luck to you as well. I find that diagnosing by doctors who that is all they do may not be the most effective way.
Honestly, it has to do with the area. I’ve since moved to FL (by way of Georgia)… Here, there are some excellent psychologists and psychiatrists that are not afraid to stand behind a diagnosis. The school system offers a lot less assistance for special ed, but there are at least four different places within a 35 minute drive that offer all of these: diagnosis, sensory integration therapies, special elementary school classes designed for PDD kids, etc.
Here is a link to the Monroe County Early Intervention listing of available Development Doctors in your area
http://www.monroecounty.gov/File/Health/Child%20Psychology%20and%20Counseling%20Resources.Appendix%20A.doc
Ellen Nakhnikian, PhD is the first one on the list that mentions PDD although many list Aspergers… Aspergers is often used as synonymous with High Functioning Autism and PDD-NOS, but it can mean something quite different… You may want to check the list for dr’s that separate the two diagnoses. It seems to me that means they pay more attention to the child
I picked up a book review where Anna’s husband wasnt diagnosed until 41 and her 2 boys also have diagnosis.
Book Review: Not Stupid. Autism Leads to School for Special Needs by Debbie Marsh from Disaboom
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Anna Kennedy has written an autobiography that doesn’t hide the pain of being the mother of two autistic children, but the bulk of the book is about triumph. In 1999, she and her husband opened a special-needs school in order to ensure that the needs of her children would be met.
The author felt overwhelmed when her first son was diagnosed with Asperger Syndrome, a form of autism. That was before she discovered that her second son had autism and would need a lifetime of care.
Although Kennedy resides in Great Britain, American readers will relate to her struggle to raise and educate her children. The book covers her courtship with husband Sean, through the birth of their sons and the boys’ teenage years.
Parents of autistic children will relate to the multiple doctor visits for testing and evaluation, the tantrums, the lack of physical affection. Kennedy tells her story in a down-to-earth style that makes her seem like an old and cherished friend. She doesn’t hide her frustration and sorrow.
“He was obsessed with shapes and patterns and worst of all, he’d scream if I touched him,” she writes of her first son, Patrick. “His refusal to show his love was heartbreaking.”
When her second son, Angelo, was diagnosed with autism, she says, “I was devastated and cried for weeks.” Her honesty makes her more relatable to readers.
By the time the boys were eight and five, they had been turned away from 26 schools for children with special needs. All of them had waiting lists. So she decided to start her own.
“It all started from sheer desperation,” she writes. “There were times when I rang my mum and just cried and cried over the phone.”
Although Kennedy discusses the process of getting the school up and running, this isn’t a how-to manual on starting your own educational institution. The emphasis is on her children, their development and how she and her husband were able to cope with problems they encountered.
Sometimes, it was exhausting just to physically care for Angelo, who sleeps about three or four hours a night and routinely wets the bed, even when he’s awake.
“Do I ever think, ‘Why me?’” she writes. “Only for a second. The thing I crave most is a little peace and quiet – and some sleep!”
But the book also exposes a rich array of friendships that Kennedy gained through her networking with parents and educators. A favorite teacher is highlighted for his work, and the growth of the school is outlined in terms of new needs and changing staff. The author doesn’t avoid discussing growing pains with the school, or her own sadness over a miscarried baby in 2004.
In all, “Not Stupid” is a frank, hopeful account that is recommended reading for adults and teens.
Not Stupid. Anna Kennedy, John Blake Publishing Ltd., 2008, 299p. ISBN 978-1-84454-507-0.