What Will Happen To Adult Children with Autism?
By Anne Dachel
To answer the idiotic question posed below,"What will happen to adult children with autism?" let me just say...horrible things. They're happening already.
Examples:
July 21, 2016, New York Daily News: Florida cop who shot unarmed therapist was aiming for his patient
July 21, 2016, Winston-Salem, NC: Fire Department Saves Autistic Man From Treatment Plant Drainage Ditch
July 21, 2016, Long Island Exchange: Suffolk Police Issue Silver Alert for Missing Autistic North Amityville Man
July 21, 2016, New Jersey Herald: Panel: 'Abuse' was cause of autistic student's broken legs
July 15, 2016, Los Angeles Times: Teen with autism was pepper sprayed and shot with Taser for being combative, police say...
July 15, 2016, Fox6 Memphis TN: Hired caregiver accused of punching, kicking autistic patient
July 13, 2016, Las Vegas Sun: Autistic man goes missing in northeast valley
You might never have thought that our society, in the span of about twenty-five years, could quietly come to accept a massive number of children with a disorder that was previously almost unknown--but we have. It's called "autism." The numbers have continually increased over the last twenty-five years with no sense of alarm. We've been conditioned to believe that those in charge are doing everything they can to research what's going on. We can take comfort in the fact that officials and doctors are worried. We can delude ourselves into believing that autism is just a new name for an age-old condition.
Children with autism are now an established fact of life here in the U.S. This article addresses what ahead. ADULTS WITH AUTISM. It asks the inane question, "What will happen to adult children with autism?" This is something that always makes me want to shout back: "Why can't they go where adults have always gone, where the middle aged and elderly autistic population is living? AND just where are all the adults with autism? Please show us a comparable population among adults---people with the same features of autism we see in our children.
Why didn't Richard Harris entitle this piece, "Where are all the adults with autism?" That's the question we all should be asking.
Harris cites the equally lame book, In a Different Key, by Caren Zucker and John Donvan.
Zucker has a 22-year-old son on the autism spectrum. She says she worries every single day about what will happen to Mickey after she and her husband are gone. “We haven’t figured it out,” she says
I've written lots of articles about the approaching tsunami of adults that everyone seems to be scratching their heads over.
Harris does such a disservice to everyone by presenting the problem while ignoring the obvious: AUTISM IS AN EPIDEMIC OF FAIRLY RECENT ORIGIN (in the words of the former attorney general of Wisconsin to U.S. Senator Herb Kohl in 2006).
And Harris, Donvan, and Zucker (and everyone else writing on this for the last two decades) fail to honestly admit that it's the taxpayers in each state that will be saddled with the enormous cost of caring for massive numbers of neurologically disabled adults who aren't here now. That's the real cover-up, and the public will demand to know how come no one warned them this was happening. Why were they told that all this was just the result of "better diagnosing"?
July 21, 2016, What Will Happen to Adult Children with Autism? By Richard Harris
The new film, 'Life Animated,' sheds light on the realities facing families
Talk about nerve-wracking. Sitting in the Green Room at the Sundance Film Festival in January, Walter Suskind was about to screen the world premiere of the documentary Life, Animated. It would be his first time watching the film inspired by his father Ron Suskind’s best-selling book Life, Animated: A Story of Sidekicks, Heroes, and Autism. And he would be doing so in a theater with hundreds of strangers....
Things would soon change for the family. Shortly after those home movies were shot, Owen — described by his dad as having the “usual going-on-three vocabulary of a few hundred words” — suddenly stopped talking. The little boy they knew disappeared into autism at age 3....
As Owen’s only sibling, Walter, now 27, has been projecting ahead to the day he’ll become Owen’s caretaker ever since he was a teenager.
“It seems a bit daunting that as my parents (now in their 50s) get older it will be on me to care for them and then become Owen’s primary guardian,” he says....
There are some 50,000 adolescents with autism who are turning 18 this year. That suggests that by 2023, a half million autistic kids will be joining the adult population. Adults with autism “aren’t cute,” says Zucker. “They scare people. The idea behind our book is to educate people and understand that adults are kids with autism who grow up and they’re still good human beings.
Anne Dachel is Media Editor for Age of Autism.
I do not think Patience is saying I am not Autistic but that I do not have infantile/Kanners Autism. I do not disagree.
All rarely applies but back then the expert consensus for "mental defectives" of all types was institutionalization. There were few child psychologists never mind Autism specialists. The generalist children saw if they were lucky might have read one or two journal articles about autism so autism was probably missed a lot. That era in many ways was the opposite of today, authority ruled. We think of the 1960's as the era of dissent and certainly a lot of historical changes resulted from that. But the tumult was mostly confined to the big cities and college campuses. In your average American home dad was a vet of WWII, mom stayed home. If a teacher said you misbehaved and you said otherwise the teacher was believed most of the time. Diagnosis was rarely questioned.
Since the "self diagnosis" can of worms was opened I might as well give my opinion on it as it is somewhat related to the topic at hand. My opinion is that a very well researched self diagnosis is a good workaround if a professional diagnosis is not available which is often the case for older adults because as of 2012 1 to 2 percent of Autism funding went for Adult Autism research and supports. Most insurance does not cover Adult assessments which is a problem considering the very high Autistic under and unemployment rates. Identifying a developmental disorder in mature adults is not easy, childhood records and memories are faded, false, and non existent. Because of the near total emphasis on children and teens diagnostic criteria and testing is often insufficient. Maturation, experience and coping mechanisms can make Autistics seem near typical. Because of the lack of funding experts in Adult autism are often hard to find especially far away from the big cities and universities. I have read numerous accounts of mature adults and especially mature women seeing generalists who have partial/dated knowledge of autism. I know it is popular today for people to believe Autism is over diagnosed self and professional, there are hordes of wannabe autistics looking to stiff the government, be cool like the "aspies" on TV, and to excuse bad behaviors. This might be true for millennials or younger but being trendy has long lost its appeal for most 50 somethings. IMHO baby boomer autism is probably under diagnosed, I fear this overdiagnosis belief can only make a bad situation worse.
Posted by: Aspie-Autistic1957 | August 01, 2016 at 01:15 PM
Thanks, Hera. I'm afraid I actually have very little confidence in the medical profession, and even less in psychiatrists! I did study psychology at university for one year, and have read many books on autism. The Theory of Mind isn't about being introverted, shy, anti-social or any of those attributes, but about the inability to understand what someone else knows. That is just one example. I have many serious symptoms for which I got a diagnosis of ME (which is now known to be a real illness, and read Judy Mikovits on the subject). My welfare benefits were immediately stopped even though I had dependent children. When apsychiatrist persuaded me I was also depressed (hardly surprising given the financial situation) my benefits were immediately restarted. So, you see, there is a political agenda attached to the inability to get the correct diagnosis, which I believe is connected with the vaccine holocaust cover-up, and the fact that my father was a pharmacologist who would have been a whistle-blower against that holocaust.
The reason, I believe, why some adult autistic people are now surfacing (and many, especially women, had been given wrong diagnoses of mental illness) is because they did not have the intellectual capacity to understand their problems. They could be on our side if we patiently explained to them about vaccine injury.
Posted by: Grace Green | August 01, 2016 at 12:47 PM
Hi Grace,
You are accepted here. I don't care if you have an autism diagnosis, some other diagnosis or no diagnosis at all. . Most of us don't, and I still see all of us as a community trying to help people. Imo, all our voices and experiences matter; vaccine injury imo can effect everybody, and it is everyone's right to protest forced vaccination.
I may not always agree with everything you say, but I definitely respect you, respect your point of view, and enjoy reading your posts.
Posted by: Hera | August 01, 2016 at 11:22 AM
Hi John, yes, I read that article on AoA and I haven't said that I agree with Uta Frith's epidemialogical views. But her description of social, comprehension and communication problems, such as, for example, Theory of Mind, fitted exactly with my experiences. Other autobiographical books by autistic people also spoke to my condition. Are you and Patience saying that my condition shouldn't be called "autism", and if so I would ask you what does autism mean? I believe the severely autistic children I have seen and read about are brain injured, and I believe I have a lesser degree of brain injury. If you accept that vaccines can cause many conditions such as allergies, autoimmune illnesses, encephalitis etc., then why not "mild" autism? Dr. Andrew Wakefield has spoken of several points being "shaved off" people's IQs by vaccines, so I don't think he would exclude people like me from the vaccine injured population. Also, what is the point of complaining about your children's condition if you don't want the support of people who don't have severly autistic children? I have repeatedly said to Patience and others here that I agree vaccines and mercury cause autism, and I support your cause, yet I am not accepted because I'm not autistic enough. You will never win this battle if you only want to preach to the choir.
Posted by: Grace Green | July 31, 2016 at 05:09 PM
Grace Green; I fully agree about finding the reasons behind autism. However, self diagnosing ( with anything) has its problems. It's a standard joke amongst nurses that when they first meet the diagnostic criteria for illness, they self diagnose with all kinds of rare illnesses. My mom joked that she finally realized that one of the things she had diagnosed herself with, only happened in men.
Similarly, people studying psychology are notorious for mentally diagnosing themselves and everyone they know in the first couple of years of study.
Almost any introvert ( which is 40% of the population) could self diagnose as autistic. Traits like hating surprise birthday parties, preferring the library to a group of friends, enjoying staying at home with a good book instead of going to a bar; these are all classic introvert traits.
But how many people would self diagnose that as autism?
Then you have social anxiety; people with symptoms of social anxiety may very easily self diagnose their problems as autism.
Then there are people with narcissistic issues; if someone feels that they are superior to other people, that they should be treated differently, and that normal rules should not apply to them, then a self diagnosis of autism may be much more palatable than admitting that they have narcissistic personality disorder.
People do know their own symptoms, and this should be respected, however diagnosis ( imo ) should be left in the hands of those who hopefully have studied enough to have more insight and a better basis for comparison. I am not questioning anyones' diagnosis; unless they gave it to themselves.
Re the people who had autism diagnoses in the past; my friend S was diagnosed in the early 1970's with autism. The diagnosis was around then. But even if we say that every person who was non verbal in the 700s was misdiagnosed, we are still talking about a huge amount of people in the 46 to 56 year old age group. These people should be easily identifiable as autistic today. So 1, in 272 of people aged 46 to 56 are currently non verbal , have autism and are needing full time care..
Even if they were misdiagnosed in the past, are we saying that the physicians etc caring for them now are going to somehow be unaware that they have autism? The 46 year old lady stimming in the corner who can't speak, and her physician today, who is apparently "over diagnosing" everyone, is somehow missing it?
It seems unlikely.
Posted by: Hera | July 31, 2016 at 02:35 PM
Uta Frith
http://www.ageofautism.com/2013/01/utter-froth-autism-epidemic-caused-by-the-film-rain-man.html
Posted by: John Stone | July 31, 2016 at 12:38 PM
Patience, I may not have read all the same papers as you as my interest takes me in a different direction. However, one thing I learned on day one of my First Aid studies with the Red Cross as a teenager was that patients have signs and symptoms. Signs are what the doctor sees, and symptoms are what the patient tells him. Symptoms are not visible but are experienced by the patient. Dr. Andrew Wakefield often says that the first thing a doctor should do is listen to the patient, yet you decry medical practitioners from taking adult autistic people seriously.
I am truly very sorry for your sad experiences, but some of us have had very different experiences. We are not ignoring you, we might disagree with you, but nevertheless seek to have a discussion with you. I totally agree that we must find out the cause or causes of "autism" but we can't say who does or does not suffer from it until we have a full scientific description of what it is. Verbal adults who realize that they have the symptoms, as described by many like Prof. Uta Frith and Prof. Baron Cohen, could make a huge contribution to that study.
Posted by: Grace Green | July 31, 2016 at 11:55 AM
Grace Green, No one is entitled to tell you that you are not autistic. That doesn't mean you are autistic. It is appalling though that so many self-advocates are taken seriously by people with medical education.
Most of my sad life has been involved with care and worry for two sons severely disabled by autism. I returned to school (Boston University School of Medicine) and for 50+ years have put great effort into understanding the neurologic handicaps of people afflicted with autism from an early age. I do not intend to be ignored.
I provided a link below to a paper on echolalic speech written in 1898, which was clearly very rare back then. The priority, in addition to lifespan care, must be to find out why autism prevalence has increased so horrifically since 1990. Whatever the cause, clamping the umbilical cord immediately after birth, vaccinations, or something else, the goal must be to find out and get it stopped.
Posted by: Patience (Eileen Nicole) Simon | July 31, 2016 at 09:57 AM
Aspie-Autistic1957. I totally agree with your last comment. I'm sure that the numbers of autistic cases have exploded since the 1990s, but that doesn't mean that their were none in the 50s (my age) or even the 1910s (my father's). I think others on this thread should remember that diagnostic terms used are imprecise and sometimes deliberately so, "autism" being the obvious example. The understanding of the condition has also changed over the years, particularly thanks to the Age of Autism. I accept your experience of the condition and understanding of it, others may have different experiences but no-one is entitled to tell you that you are not autistic. That is ridiculous.
I would add to your list of diagnoses wrongly given for autism in the past "childhood trauma", meaning sexual abuse, another way of blaming the parents.
Posted by: Grace Green | July 31, 2016 at 05:21 AM
Aspie-Autistic1957, If you weren't identified in early childhood with failure to learn language, then your developmental problems were not due to infantile autism. A survey by JK Wing et al. in 1967 found autism prevalence in Middlesex England to be 4.5 per 10,000, and (of interest to me) was that autistic children suffered more complications during pregnancy and delivery than their siblings [1]. Birth injury is now a taboo subject.
Anne continues to point out the increase in childhood autism since the 1990s. These children remain severely autistic in adulthood. Trying to compare them to eccentric geniuses is ridiculous, as is the suggestion that adults with autism were all institutionalized in the past. You need to read how doctors in charge of those institutions described mental subnormality and language development [2].
Language development is the most serious problem. The comparison should be made with deaf children. The cochlear implant has been a miracle for deaf children. The book by cochlear implant surgeon Dana Suskind explains why in her book, Thirty Million Words; Building a Child's Brain [3]. Language is the most important "developmental task" during the first 4 to 5 years of life.
References:
[1] Wing JK, O'Connor N, Lotter V. Autistic conditions in early childhood: a survey in middlesex. Br Med J. 1967 Aug 12;3(5562):389-92.
[2] Barr MW (1898) Some notes on echolalia with the report of an extraordinary case. Journal of Nervous and Mental Disease 1898; 25:20-30.
Online at: http://conradsimon.org/BarrEcholalia1898.html
[3] Suskind D. Thirty Million Words; Building a Child's Brain. New York: Dutton, 2015.
Posted by: Patience (Eileen Nicole) Simon | July 30, 2016 at 10:08 PM
Hera and Eileen - As far as I know I was not identified until 2013. I was probably indentified with with something in 1965 after bieng thrown out of school but nobody and all the records I am sure were destroyed decades ago.
A severe, intellectually disabled autistic child would be identified with something in the 1960's but it was far from certain it would be Autism. There was always "Childhood Schizophrenia" , "Mental Retardation" was common, "Brain Damaged" which Susan Boyle and an Autistic I know was diagnosed with, deafness was also a common misdiagnosis as the children were not responding to voices, spastic. and maybe hysteria for girls. They all fell under the catagory "mental defectives" . Autism was considered an extremely rare condition so there was little or no money professional glory in specializing in it.
Posted by: Aspie-Autistic1957 | July 30, 2016 at 05:06 PM
Hera, Thank you for your response to Aspie-Autistic1957. The disorder described by Kanner was also long referred to as "early infantile autism." It sounds like your friend S was diagnosed in early childhood, along with serious visual problems, which sounds like he may have suffered prenatal exposure to a teratogenic drug.
In PubMed you can find the paper: Gillberg C, Cederlund M. Asperger syndrome: familial and pre‐ and perinatal factors. J Autism Dev Disord. 2005 Apr;35:159‐66. Developmental language disorder was reported in most cases, as were difficult birth and neonatal jaundice.
Increases in auto-immune disorders, asthma, severe allergies, diabetes, premature puberty, gender-identity disorder, school problems, all point to some recent horrific influences in early childhood. Clamping the umbilical cord and the increased schedule of vaccination must be considered as serious health risks.
"Social disorder" was a euphemism intended to diminish the stigma of early infantile autism. "Social disorder" not associated with developmental language problems is something different, and should never be viewed as late diagnosis of autism.
Posted by: Patience (Eileen Nicole) Simon | July 30, 2016 at 06:30 AM
Grace Green and Hera, The experiments on asphyxia reported in the October 1969 issue of the Scientific American were intended to provide a primate model of cerebral palsy. But the monkeys did not develop cerebral palsy. They were developmentally delayed, but eventually "caught up" and at first no brain damage was found at all.
SS Kety suggested looking at the inferior colliculus (in the brainstem auditory pathway). In research on blood flow in the brain, he discovered that blood flow is higher in the inferior colliculus than anywhere else in the brain. His 1962 paper is free online, and can easily be found in PubMed. I have provided the link many times on AoA. The inferior colliculus is also most vulnerable to damage from mercury, lead, and many toxic chemicals, including valproic acid (Depakote).
RE Myers (in 1972) discovered that cerebral palsy is caused by partial oxygen insufficiency late in pregnancy or during birth.
Kernicterus (athetoid cerebral palsy) was found to be caused, not by bilirubin (jaundice) alone, but only in cases that also suffered asphyxia. This points to the clear danger of hep B injections right after clamping the umbilical cord at birth. Resuscitation does not reverse damage caused by a brief lapse in respiration at birth.
Clamping the umbilical cord is a clear medical error that must be stopped. In my response to the IACC request for information (RFI), I suggested that money awarded in lawsuits should be allocated to funding life-long care for cases of non-verbal autism.
Posted by: Patience (Eileen Nicole) Simon | July 30, 2016 at 06:27 AM
Aspie-Autistic1957,
The criteria I used was non verbal and autistic. I would think that under any diagnostic criteria at all, someone with autism who cannot speak/communicate would be identified. You were identified and so was my friend S, in the past, despite the fact that both of you could speak. This means that as well as the people who could speak who had autism in 1950, there was also another population of
1 in 272 of everybody born who could not speak/were non verbal .
There is no way someone who spent their whole life unable to speak would fail to get a diagnosis imo. Non verbal, I think , could never = special snowflake.
The 1 in 272 would be people in the general population who are non verbal and autistic. What interests me is that the rates of autoimmune diseases that could be considered easier to track are also showing a large increase.
It is hard to believe, for example , that given that untreated type 1 diabetes results in death, that the slew of new type 1 diabetics could be "better diagnosing"
There doesn't seem to be any evidence that massive portions of the population were hidden institutions in the 60's and 70's and are still there today. These are people who would be between 56 and 46 years old.
Posted by: Hera | July 29, 2016 at 03:46 PM
Eileen. I have no idea the cause for the my speech impediment.
The problem with all of you quoting numbers is since autism was discovered there has never been close to agreement as to what it actually is and since diagnoses is based on observed behaviors and self report diagnosis is highly subjective. One clinitions ASD level 1 is another clinitions special snowflake. And yes the diagnostic criteria has greatly expanded.
There were always in my classes the one or two bullied wierdos or space cadets maybe some of them were "Aspies" . In the other post I mentioned misdiagnosed in institutions but not all famalies could afford that. They threw thier adult children in the street to "sink or swim" or they kept them chained in the attic. A lot of neighboorhoods had a "haunted house" where the local teens threw rocks through the upstairs window and ran figuring the "psycho" will come after them with a knife. We do not know if one in 200 of those "psychos" was severe autistics.
Posted by: Aspie-Autistic1957 | July 29, 2016 at 12:15 PM
Patience ( Eileen Nicole) Simon;
I think there are some studies that show oxygen deprivation at birth being a risk factor for an autism diagnosis. A low apgar score at 5 minutes is also a risk factor.
My own opinion; you take a baby who already has autism risk factors, low birth size, premature, or oxygen deprived, and then give them the Hep B vaccine within the next 24 hours, and the result is a huge increase in real autism rates.
By the way, Aspie-Autistic1957, at least one doctor did suggest S be institutionalized; he was also almost blind and needed a surgery to correct his sight, which he had done when he was fairly young.
Posted by: Hera | July 29, 2016 at 09:59 AM
Patience, I agree with you about clamping if the cord too soon after birth, but I think that it usually results in cerebral palsy. The causes of autism are still disagreed about but I'm sure vaccination is a primary culprit.
My reading about autism and asperger has consistently confirmed that it covers a wide range of presentations and degrees of severity. It is also extremely difficult to diagnose, especially in adults, and at the more aserger end of the spectrum. Many of us suffer needlessly for years or decades because of having a wrong diagnosis of mental illness, which ASD definitely is not. For those reasons I think it is important for people on this website not to tell people who have or believe they have ASD that they haven't. People know themselves, and a brief description of their condition on these comments can't be enough for anyone here to change their diagnosis.
Posted by: Grace Green | July 29, 2016 at 09:31 AM
Anne, Thank you for keeping up with all these reports. After reading Jeanne's post below, I looked at the link to the first one. My son (at age 53) always carries toy cars in his pockets. The bigger ones could be mistaken for a gun. My son has been running away from his group home a lot lately. He visits hospitals, but does not know how to ask for help. When asked if he is a danger to himself or others, he does not realize that answering "no" gets him immediately ushered out the door. His physical health is never assessed.
Even though my husband and I now live in a small elderly housing apartment, we have even been harassed for not having him live with us. I heard in the news the other day that John Hinckley, who in 1981 shot President Reagan and his press secretary James Brady, has been released from a psychiatric hospital to live with his mother. John Hinckley is now 61, so his mother is close to or in her 80s by now. Doesn't anyone see what's wrong with this???
Posted by: Patience (Eileen Nicole) Simon | July 29, 2016 at 08:12 AM
Hera, Thank you for describing the person with Aspergers you grew up with, and pointing out that he had an autism diagnosis later changed to Aspergers. My son likewise was given the Aspergers diagnosis in the 1980s, after Lorna Wing's report came out. My son's speech remains often slightly stilted and full of canned expressions. He cannot follow conversations easily, thus remains a loner. His social disorder is the result of his difficulties with speech comprehension.
Aspie-Autistic1957, Your problems do not seem to fit the definition of autism as described by Leo Kanner. Was your speech impediment the result of impaired language comprehension? When my son was young, he was one of very few. Most of the children at the Massachusetts Mental Health Center (MMHC) had other psychiatric disorders, many had seizure disorders, but not autism. I did not pick MMHC. A Harvard psychiatrist whose special interest was autism admitted my son to the children's unit.
My son had head injury (cephalhematoma) and asphyxia at birth. An article in the October 1969 issue of the Scientific American reported damage in the brainstem auditory pathway caused by asphyxia at birth. That seemed like a logical explanation for my son's failure to learn to speak. In the mid1980s, clamping the umbilical cord immediately after birth became standard practice. This cuts off placental respiration before the lungs are inflated. This can lead to asphyxia and damage in the brainstem auditory pathway. Termination of placental circulation immediately after birth should be recognized as a serious medical error that must be stopped.
Posted by: Patience (Eileen Nicole) Simon | July 29, 2016 at 08:10 AM
This is exactly why I am in the early stages of setting up a park-like residential center for adults with autism in Austin, TX. The board of directors will consist of families, doctors, and therapists. And there will be a requirement for relatives of residents to donate a few hours a month of their time. This ensures that there is additional oversight. I'm looking for 40+ acres of property on a lake close to the town. Residents can work on the property or, if able, work off the property. My son needs significant supports so he will likely be working P/T on the property and have his daily schedule filled with activities (fitness, music, creative time, relaxation, hippotherapy, attending off-site activities, etc.). I'd like to also have the location serve a purpose for the community to subsidize the costs related to running this facility. We can offer the site as a venue for weddings, receptions, concerts, outdoor movies, Special Olympics, etc.). Residents can help with and assist workers for these special events. We'll have a pool and several walking/riding paths on site and an organic garden. Residents can live in single dorm-like rooms with private bathrooms or doubles (two people to a room, sharing a private bath). We are seeking to be a LEED facility to reduce our footprint on the environment. Families need to ensure our adult children with autism will be cared for...the government will not be equipped to do so!
Posted by: Warriormom | July 29, 2016 at 08:00 AM
Sorry; just to clarify my previous comment; S had a diagnosis of "autism" growing up. He much later was diagnosed with aspergers. He has a monotone speaking voice, and very focused interests; AC/DC radios, batteries etc as a kid. S spoke clearly and appropriately; he had no issues with language or with being understood.
Posted by: Hera | July 29, 2016 at 01:18 AM
Aspie_Autistic1957,
Even as far back as Kanners time there were definitely some people with autism; I grew up with a young man, S. with an autism/aspergers diagnosis in the 70's. But it was much less common. And the rates of autism diagnosis were very different.
Autism rates back then were
1 in 10 000
Estimates suggest that 25% to 50% of people with an autism diagnosis are non verbal; and 30% of people with autism have seizures
So given the current rate of 1 in 68, even if we take the lowest non verbal rate I could find ( 25 %) we find that 68 x 4= 272. So we currently have a rate of 1 in 272 non verbal people with autism. ( By the way, by restricting the criteria to non verbal people we would have excluded both the man I knew growing up, and also yourself, so the 1 in 10 000 rate would have been even less if you were only looking for non verbal people.) Also 1 in 204 people right now have both a diagnosis of autism, and are having seizures. ( S did have seizures.)
There certainly were a few people with autism back then, just as there were some ( very rare) cases of type 1 diabetes in ancient history. But when I look at the numbers, there is no way I can see this incredible increase as a result purely of diagnosing more mild cases. Then 1 in 10000 were severe enough to get a diagnosis; now 1 in 272 ( using a conservative estimate) can't speak.
Posted by: Hera | July 29, 2016 at 01:07 AM
Eileen Simon - My language was not delayed but I have always had a mild speech impediment. My public elementary school did throw me out after 2nd grade because they said they could not get through to me. My report card was all "N" - Needs improvement" . A private school was found for me as well as a psychologist. What diagnosis was given if any has been forgotten as this was a half century ago. The insurance ran out and I guess I improved enough that my public school accepted me back for 5th grade. It was too soon. So I very much could have been institutionalized. And most of the institutions back then were snakepits. Your son was probably helped by you using your knowledge to pick a good institution and I was helped by both parents being teachers so we probably got favors.
Interesting you mentioned umbilical cords because when I was assessed in 2013 my clinician with 30 years experience asked if forceps were used when I was born which they were. With all the emphasis on environmental toxins and changing diagnostic criteria other theories such as ours get ignored.
Most autistics are not Sheldon or severely intellectually disabled but I agree with you the rest of us are hurt in various ways by these stereotypes. I do not have the statistics but I think that the number of people being diagnosed with ASD Severity Level 2 is a lot less then ASD Level 1 and a lot less then ASD Level 3.
Posted by: Aspie-Autistic1957 | July 28, 2016 at 04:00 PM
Donald Trump is aware of the autism pandemic and supports a safer vaccine schedule, while Hillary Clinton supports mandatory vaccinations for all. As a parent of a vaccine injured child, now in adulthood, I know who will get my vote...
Posted by: Lindy | July 28, 2016 at 01:27 PM
500,000 people between the ages of 16 and 21 will age out of the education system and what will happen to them? My son is among the thousands of adults who have already aged out of the educational system and entered adult services life. He is part of the first wave of people diagnosed with autism and he has thousands of people along with him. Society will not be able to fund the services needed by the huge population of autistics already in the system and those who will be coming. Donald Trump and Hillary Clinton should be questioned about what plans they each have to deal with this crisis if they are elected president. We and our children can no longer be ignored.
Posted by: Gayle | July 28, 2016 at 12:32 PM
Anne, thanks for this important post. I have been greatly disturbed by the first event you referenced (since that is the one that has gotten media attention). It is both disturbing that Mr. Kinsey, the caregiver of the young man with autism, who did everything humanly possible to keep his client safe, got shot, and that the police union representative indicated that what the officer really wanted to do was shoot the young man with autism. This nightmare, that thankfully ended with Mr. Kinsey still being alive (no thanks to his police SAVIORS) could have been soooo much worse, had it ended with the death of an obviously concerned caregiver, or the young man with autism. This episode exposes that dangers lurking for our adolescent to adult children with autism, with a society of first responders who a completely clueless to their needs. Let's shoot someone with disruptive, meltdown autistic behaviors - 'cause that makes sense. We need to call, write, flood the offices of our congressional representative to pass H.R. 4919, Kevin and Avonte's Law. It, apparently unanimously passed in the senate two weeks ago. We at least should have some standard training for all first responders who are supposed to protect the autism community, as part of the community they serve. Our best bet is to try to have it come up, some time in September, as the August recess is about to happen, and after September, their minds with only be on the election. We've got to do our best to try to keep the ignorant from opportunities to maim and kill our kids!!!
Posted by: Jeanne J | July 28, 2016 at 10:09 AM
Excellent article, Anne. Some of the adults with autism are working because they're capable of working. And here's a path to opportunity for the unemployed adults on the spectrum: https://www.thespectrumcareers.com/
Posted by: Nish Parikh | July 28, 2016 at 07:57 AM
Aspie-Autistic1957 - I have been alive on this earth two decades longer than you. My autistic son is now 53 years old. Language development was his great handicap. He was dismissed from public kindergarten because he could not speak. He was admitted to the children's unit at the Massachusetts Mental Health Center, where he learned to speak just before turning six.
I am eternally grateful that he was "institutionalized" with other children. If he had remained home he would likely still be non-verbal. Only five other children on the ward were autistic.
Were you delayed in learning to speak? Your Asperger syndrome sounds completely different from my son's Kanner autism. In the 1980s my son was re-diagnosed with Asperger syndrome, but that was later changed to PDD-NOS. Sadly, he now lives in a group home for schizophrenic men. He is too "high functioning" to qualify for services for the developmentally disabled. He is an amazing savant, but in no way like the schizophrenic men in his house. Schizophrenia is a euphemism adopted in 1911 to replace the diagnosis "demetia praecox."
I have been an autism researcher for 50+ years, long before the authors of "In a Different Key" or "Neurotribes." My series of six books are available online at amazon,com, "Autism and the Inferior Colliculus." My books are based on the history of neurology and neuroscience.
Kanner autism is a neurologic disorder of language, involuntary movements, and diminished level of consciousness. Kanner autism has been on the increase at an alarming rate since the 1990s. I believe that the obstetric protocol to clamp the umbilical cord immediately after birth is the primary cause of the increase. Immediate termination of blood flow at birth often leads to a brief period of oxygen deprivation, which damages the inferior colliculi in the brainstem auditory pathway.
Damage in the brainstem auditory pathway not only disrupts hearing, but also maturation of the language areas of the cerebral cortex.
Posted by: Patience (Eileen Nicole) Simon | July 28, 2016 at 06:51 AM
As an adult with ASD I used to read the website Wrong Planet. I no longer agree with their belief that ASD is genetic, but I do remember that there are always comments on the abuse, insults, threats, violence and bullying that even relatively able adult autistic people experience on a daily basis. This is also my experience, and not just from your average bigot on the street, but from those in authority too. This is why I think we all have to stick together and fight this thing on all levels. Some of the criticisms of us on AoA by the "neurodiverse" lot have some validity (eg always talking of autistic people as "children", and the only advocates as "parents") and likewise we could be helping them by opening their eyes to the element of environmental effects. When are we going to start building bridges?
Posted by: Grace Green | July 28, 2016 at 06:08 AM
I am going to criticize you but before that I want to praise you for the article you did about a month ago when in which you decried the autism-violence link created by the media.
Same old debate vaccine or some other toxin vs expansion of the diagnostic criteria. I think diagnostic criteria has a lot to do with it but there are environmental factors that are overlooked in the massive increase in the autism prevelence rate. I speak as a person with almost 6 decades of experience bieng autistic and who has lived through all the changes in society during this time. There are so many more ways to overstimulate a person today with sensory sensitivities then when I grew up. Multitasking which autistics are poor at was not even a word when I grew up, now it is the requirement for success. We spend most of our time staring at screens how are kids supposed to learn social skills? Every moment of our kids lives are managed today. Back in the day my parents said go outside, be back in time for dinner. By first grade I was walking by myself for several bloicks, by my tween years spending all day riding my bike and taking public transportation. My parents were not "free range" parents who would be arrested for child abuse for letting me do those things today, that is just what parents did. There were a lot of things that royally sucked about growing up undiagnosed and my life was not and has not been typical but I am grateful I was given those opportunities, they helped me figure out who I am and who I am not. What I am trying to say is that people with certain levels of autism who could function then are disabled today and thus need a diagnosis increasing prevelence rates.
Changing things up I am sick and tired of you all asking "Where are all the adults?" I am right fucking here and have always have been here. I wonder if you read the book "In a Different Key" . If you did you would know that people who were considered "mental defectives" were institulized for life thier parents told to remove all momentos of their kid. These people are still instulationalized or more likely dead. Some of them were probably misdiagnosed autistics. A study from Sweeden that came out this year showed that Autistic people die at a much younger age then non autistic people. If you are looking for Autistic adults you are not going to find them if they are dead or institutionalized.
Posted by: Aspie-Autistic1957 | July 28, 2016 at 02:11 AM
http://www.rollingstone.com/culture/features/lukes-best-chance-one-mans-fight-for-his-autistic-son-w431012
was surprised to see this in Rolling Stone.
Posted by: greyone | July 27, 2016 at 05:51 PM
I am 20 years ahead of the people trying to figure this out. My daughter, with autism, is 45 years old. At 24 she was regressing because she had outgrown the teenager activities and she fell into a deep hole. My husband and I retired and we moved, further complicating her autism. As time went on, I met another parent at church and we started a social group for families who retired as a three-some. No government funding, no paid staff...just parents wanting socialization for their child who has goals of employment and living in the 'community.' Robin got a job bagging groceries. We just kept moving forward, like we had done when she was a child. Next she returned to diet, this time Gluten Free. Next was falling into the supplement arena and our state's adult MedWaiver Home and Community Based services. My original goal was to get more Speech Therapy because of the regression. With this she also got RDI and IM. Step by step by step by step we kept moving forward.
Today Robin is a cashier, driving her own car, living in her own condo and she has friends. Utilizing her energy, she does CrossFit three times a week in a REGULAR class, which requires the Paleo diet! She loves her life. And yes, she still has Speech Therapy 4 hours a month for stability.
Sure this is all fragile. I'm 76 years old! My husband and I moved into her condo development, thinking she might want the larger condo when we pass...maybe a roommate?
Sure her sister's are going to be involved in her life. BUT, she will not need to live with them. They certainly want to 'check in' on her but she will be fine. Robin has a Support Coordinator and I have a relationship with a Provider agency. I expect her Speech therapist to help with the transition.
Adulthood is a long process. It has taken fifteen years to get Robin where she is today. I wrote a book about her process because other parents cannot believe she was severe autism. (www.autism-believe-future.com)
You can only do what you can do.
Posted by: Ann Millan | July 27, 2016 at 04:52 PM
"Police Captain with Autistic Son Says Police Must Learn About Autism"
https://www.youtube.com/watch?v=8bd6TZj0c0E
Posted by: Jeannette Bishop | July 27, 2016 at 03:13 PM
I think it critical that SOMEONE .. (Canary Party?) .. asks Anne's question .. "What will happen to adult children with autism" .. TO THE ONLY TWO PEOPLE IN THE WORLD TODAY .. THAT ARE GOING TO HAVE TO DEAL WITH THAT QUESTION ...... THOSE TWO PEOPLE BEING NOW CONFIRMED PRESIDENTIAL CANDIATES .. HILLARY CLINTON AND DONALD TRUMP.
(Think about that for a moment .... what better moment of OPPORTUNITY .. to ascertain .. once and for all .. if EITHER of these candidates even KNOW of the looming problem .. or .. even worse .. know but don't CARE. After all .. Anne's question has absolutely nothing to do with VACCINES .. the question merely asks: "What will happen to (400,000-500,000) adult children with autism?" In other words ... BOTH candidates should be REQUIRED to acknowledge whether they EXIST or they DO NOT .. by answering Anne's question NOW)
In any event .. our community desperately needs SOMEONE .. (Canary Party?) .. in the media, academia, special education, law enforcement, public health bureaucracies, either Republican or Democratic political parties, including the Libertarians and Greens, etc ... that has the personal courage to issue a PRESS RELEASE .. or .. PUBLICLY CONFRONT .. our Presidential nominees .. asking BOTH what lies ahead for the estimated 400,000 - 500,000 children with autism between 16 an 21 years of age TODAY ... because .. those hundreds of thousands of soon-to-be ADULTS with autism are already in the pipe-line .. with 2022 the year when they will .. trust me on this .. graduate .. impacting our communities and social services in numbers .. that can no longer be ignored.
I have another dream ... I pray to God that someday .. somehow .. someone .. I don't care if they are Chinese, Russian, Korean, whoever .. will "hack" into those critical .. inter-agency emails within US public health bureaucracies .. and .. the PEOPLE of the United States .. can finally read for themselves of the subterfuge and skullduggery that has gone on for two decades regarding the damage done to our children's health.
THAT IS MY DREAM ........
Posted by: Bob Moffit | July 27, 2016 at 03:05 PM
Excellent and worrying article. This frightening prospect begs the question 'When will the world wake up to the real cause of autism?' I find it incredible that so many people still believe the media/Pharma/medical industry lies.
Posted by: susan | July 27, 2016 at 01:56 PM