If There’s No Autism Epidemic, Where are all the Adults with Autism?
April 24, 2007 by Kristina Chew, PhD
Filed under Health
These are the opening paragraphs of an essay by Roy Richard Grinker and myself. The entire piece can be read on Unstrange.com and also via the sidebar on Autism Vox.
In February, 2007, the Centers for Disease Control (CDC) announced the results of two surveys of autism spectrum disorders covering 22 states. Using the newly funded Autism and Developmental Disabilities Monitoring Network (ADDM), CDC researchers found an average rate of 1 in 150 children with an autism spectrum disorder, with New Jersey at the top, with a rate of approximately 1 in 100. On the surface, these figures suggest an epidemic.
When scientists respond that there has been no true rise in autism, that we are diagnosing autism more, and counting it better, believers in an autism epidemic – mostly parent advocates, philanthropists, and politicians – argue triumphantly that if there is no epidemic, then 1 of every 150 adults in the United States must, in fact, have autism. Along with journalists, they repeatedly ask, “Show me where the one in 150 autistic adults are. We can’t find them.”
Just where might those 1 in 150 adults with autism be?
As surprising as it may seem, they are living and working among us.
Read the rest at Unstrange.com and at Autism Vox.
Dear Donald Savitz re Jul 4 questions.
We lived in different parts of South Wales where no fluoride was ever added to the water. We lived in suburbas and city centres and used ordinary tap-water. There were not a large number of infant deaths.
Autistic grandparents?
Can’t ask mine; he died a few years ago.
I’ve got autistic grandparents, one on each side. I’m 25.
Concern trolls are still trolls.
How would you know the symptoms of “Adults with Autism”? If there is online questionaire or test that will label one as Adult with Autism, then you could know where the “Adults with Autism.”
Even I am not diagnose as a autism when I was child, I have consider myself as “Adults with Autism”. I have greate difficulty with spoken language and social skills, but I have other multiple talents that allowed me to be integrated with the society and even part of financial work force of Wall Street and Fortune 500 companies. I just need to know my strenght and weakness, and a lot encouragement and love from my family, friends, even my special partner. The most important is understanding of the Human Resources and my Bosses, while my office mates just brande me as “loaner.”
Once again, if you have online to track down or test the Adult with Autism, please let me know.
The Autism Research Centre in Cambridge (UK) has this Adult Asperger Assessment—-perhaps it might be a start?
Hi Kassiane; Nice to hear from you and those kind words, to tell the truth I am a grand parant who has a grand son who has Downs that is almost a cousin to autism both genetic in make up. Right now autism is the 800 lb gorilla in the room and who is getting all of the press so climb on and maybe you may kill two birds wth two stones. With all of the experts of to day and afier 60 years there would be a test that after 3 months you should know if you were going to have a baby that may have Autism. They told us after 3 months he had Downs. That is very inresting that have austistic garndparents. Then the question becomes witch ones male or female, and [i half to ask the qustion] did you get autism and if not WHY not?
Hi Liquid Zeolite; It is nice to see you are going try to get water filters to take the Fluoride out of the there water supply. After talking to my son who took chemistry in collage and he said that the filter will have be some thing with carbon as the filter median. I wish you the best of luck.
Hi Barbara; I may be wrong but isn”t that known for coal mines and stell mills. You can correct me if I am wrong. If I am right ther was something more deadly yhen fluoride it woul be mercury[some thing china can look foreward in a couple of years] it will take enough mercury in soil from all the new power plants.
Kristina; Just a short note on vaccines then I will try to stop saying any thing about them again. The waye I see it that the vaccines play a small part in the big picture along with the other two other Fluoride{lead and arsenate ] but Iam not sure if it is vaccine or the thimerosal but is one or the other.
Both my grandfathers are autistic. So is my dad. I’m a girl. I am ALSO autistic. It’s pretty clearly genetic in my family-even the non autistics are neurologically interesting.
Kristina, thank you for that link. I’ll look into it.
I’m another adult with possible autism. I don’t intend to get a diagnosis at this time. I will not be surprised if any of my children are on the spectrum. My mom has a few traits, and so does my dad. The more I think about it, the more family members I can turn up on both sides who have traits–cousins and such. Some are diagnosed and some are not. Whatever.
Hi Kristina Chew, I answered all the questionnaire at the link that you posted. After careful reading and self assetment, I can be counted as one of the “Adults with Autuism” or Asperger Symdrome.
Also, I was reading your previoius posted comment on May 4, 2007 at 4:46 pm at this specific topic that needs to be address, as you have commented “…of New Jersey’s state government) considered harassment on the basis of sexual orientation, race, and so forth. I asked if any persons with AS had approached the office; the speaker said that they had not received any complaints regarding workplace issues for someone with AS. The speaker then mentioned a case … I was not satisfied with that answer.”
Eventhough I have a good record and bonuses prior, I was fired from work or I was forced to quit due to “lack of communication skills.” It started that my new boss removed 2 senior manager and then he started giving me management level that I needed to start interacting with executives, such as vice-presidents and senior directors. I was dome to failure. Anycase, I still have some documents what happened.
It will be nice that all the Autistic people from young and old and from different spectrum would be protected from discrimination action.
Please let me know if you have more informations on discrimination on AS, and how to protect our rights or let HR know about it.
@Ron,
Sorry am just writing back right now. I’ve wondered about some other friends of ours who are on the spectrum (though not diagnosed)—communication skills have affected their employment. And, thus, had problems in terms of their livelihood and much more.
The Autistic Self-Advocacy Network has information about discrimination on AS and protecting the rights of those on the spectrum. Very best—-
If any body checks this board go everything causes autism.
Genetics says that the adults with autism will be the same families that had kids with autism. So, did you see autism in your siblings, your cousins? Did your mother, aunt, other describe the language issues, the perseverative behavior, the head banging, the many trips to the doctor trying to figure out what was wrong? Such events are rare even among the autism families. That rarity says that there is an epidemic.
Hullo Ed I had no siblings except a half-brother. My dad was autistic, but was not the father of my half-brother. I am mildly autistic. My son was diagnosed as profoundly autistic. Yes, there were autistic symptoms in some of my father’s cousins and siblings, plus other distant relatives, all now deceased. My father’s father was considered to be extremely eccentric so who knows? All the symptons you mention have existed in my family.
To Donald: Yes, years and years ago there were coal mines and steelworks in other parts of South Wales, but no more. There has been no sign of nercury. Local water supplies are known for its purity.
I agree with you, those older autism survivors are all over.
My grandmother was diagnosed as schizophrenic at 10 back in 1915, my mother was diagnosed as schizophrenic back in 1965, both underwent electric shock treatments and both were locked up at various times of their lives. However, having researched autism a few years ago while getting my psychology degree, I see that they fit the diagnosis perfectly and so do I.
As a child at school I’d hide in the bathroom at recess every day, and I had extreme difficulty making friends. I lived in an imaginary world a lot of the time and I used to love books because when I’d turn the pages I’d see people moving on each page.
I always felt different from other people and socially awkward. But, I’ve noticed changes over the years, the older I get, the more aware I am of my feelings and emotions. My nerves feel as if they are frayed and although I’m only 45, I feel 80. Other things I notice is that over the years I startle more easily, in fact, I even jump during commercials. Socially, I’ve never had any close friends and that has not changed. Yet, I am very close to my children and my autism has helped me become an excellent mother because I built my world around them. ( I could care less about their fathers though LOL.) As a mom with autism, I didn’t mind just sitting alone in a car waiting hours for them during all their activities as their happiness was my happiness.
While raising my son, I saw that he was much like me. My heart would break sometimes because I knew how hard it was for him to socialize. When I’d drop him off at school in the morning he’d have a terrible stomache aches and head straight for the bathroom. Further, everytime he faced stress he’d put on a costume and run through the neighborhood, often hiding behind bushes or in neighbors yards. His sister and I thought it was funny, but now I see that he was running from himself and the costume was just an added defense mechanism.
As I stated before, I only learned about autism a couple of years ago. Before that I just thought my family was strange including an aunt whom refused to come out of her house for 15 years. Further, I thought it was just a coincidence that my great-grandmother, grandmother and mother were all single moms, and my 24 year old daughter drops her boyfriends like hot potatoes. Now I understand all the “aloofness”.
Still, I am glad that I never new about this condition and I certainly will not tell my son as he’s finally making a few friends and is in college successfully I hope this time (after 4 unsuccessful tries.)
Had I known that I was autistic, I don’t think that I’d have accomplished so much in life. I forced myself through college, to apply for jobs, etc., which are all out of my comfort zone and have lots of successes and good memories in the “outside” world.
It’s been hard, but if I had known that I was autistic, I might have become lazy and complacent and probably signed up for disability.
@Janet,
thank you thank you for writing so much about your family and I so so hope your son has found the right school. If I may ask (being a college professor myself) what is he hoping to study? College is no easy endeavor…..
I really think my grandfather (on my mother’s side) had some kind of Asperger’s. Brilliant and and an original thinker, not so good with emotional matters (but give him a slide rule…..).
Hope things have been good—-thank you again——-
Kristina,
A case may be made for Aspergers in the family, but I cannot find the classical autistics that your son and mine belong to. Aspergers are functional and at the time merely considered to be odd. The classical autistics would have stuck out and been institutionalized.
I think that there could have been a lot of dependencies on where “classical autistics” would end up. Although in reading the below papers, I noted some time in specialized schools or in some cases, institutionalization, the latter did not seem to always be the default.
I think that these two papers are interesting on describing adult outcomes, because they were somewhat prior to the concentrated interventions of today, certainly prior to biomedical interventions, and because they are far richer in their case study descriptions than the usual,
Somewhat mixed outcomes of the original clients of Leo Kanner,
Follow-up Study of Eleven Autistic Children Originally Reported in 1943.
Leo Kanner, 1971
and
Followups of 11 children, including Donald T. and Frederick W. from the original children, who were found to be fairly successfully integrated into society at adult life,
“…This, then, is the profile of eleven autistic children, now adults, whose social adaptation does not run counter to the general run of the populace. It differs essentially from that of at least 83 of the 96 other autistic children in the series. Fascinating as it is, it does not offer a definite clue for the cause of the difference. The presence of speech before the age of 5 years and the fact of being kept out of state institutions are helpful hints but, being shared with some of the non-emerging children, they can only be viewed at best as straws in the wind pointing to prognostic probabilities…What can we make of the fact, documented in this study, that almost 11 to 12 percent “got there” without any of those [therapeutic] techniques?
Kanner, L., Rodriguez, A., & Ashenden, B. (1972). How far can autistic children go in matters of social adaptation?. Journal of Autism and Childhood Schizophrenia, 2, 9-33.
Both from,
Neurodiversity.com
What I’ve especially wondered about is what would have happened to a child like Charlie who struggled with so many behavioral issues, including SIBs. (I don’t mean to say that SIBs are part of being “classically autistic”; I feel fairly sure that methods to address these would not have taken the educational, humane approach they have today.)
To Kristina Chew, PhD: Pardon my ignorance but what are ‘SIBs’?
Anyone who says that there are no autistic adults are without a doubt, the most ignorant morons around along with mindless celebrity worshippers and hardcore politician supporters.
Anyone who says that there are no autistic adults such as Jenny McCarthy and JB Handley are blatantly ignorant. The first scientific studies of autism took place during World War Two. Those children would now be in their 70s. I heard that JB Handley offered to send a mother of an autistic child $10,000 over the phone. She declined the offer. However, it may be a fabrication. Even if it isn’t JB is still a pompous ignoramous.