By Anne Dachel
Autism activist Julie Obradovic wrote An Autism Mom's Open Letter to Dr. Paul Offit in September of 2008. She wrote regarding his book, Autism's False Prophets and she made excellent points on the subject of vaccines and autism.
I'm also publicly addressing Dr. Offit with an open letter. My topic is the numbers. For years whenever the media has covered autism, it's been about kids with autism. Most of us never knew anyone with autism or who showed autistic traits when we were growing up but today everyone has a friend, relative, or acquaintance with an autistic child and no one can reasonably tell us why. That will soon be changing. We're starting to see news reports about the needs of adults with autism and the concerns of their parents. Since Dr. Offit has been included in countless stories dismissing the claim that there's an epidemic of autism happening in our country, I'd like him to answer my questions on the subject.
OPEN LETTER TO PAUL OFFIT
Dear Dr. Offit,
Since I follow the news coverage of autism on a daily basis and because I've read your book, Autism's False Prophets, quite thoroughly, I would like you to explain what we're seeing in the latest reports about the autism numbers.
I'm aware that you personally don't believe that there's been any real increase in the autism rate. More kids don't really have autism, we're just diagnosing the disorder more often because of greater awareness on the part of doctors and because the definition of autism has been expanded to include less severe forms.
Even though many say that the autism increase is just the result of a name change by the medical community, I'm having a hard time understanding the news stories on services for adults, or more specifically, the lack of them.
What really got my attention was the report by the California Senate Select Committee
on Autism presented in April, 2009 http://www.youtube.com/watch?v=_dzj8a1jyMg
President pro Tem of the California State Senate, Darrell Steinberg, talked about coming up with services for adults with autism. He noted the need for housing and vocational training for those "who age of out the system."
Another speaker on the video gave us the mind-boggling numbers, saying that there were "fourteen thousand students with autism [in California ] a decade ago." Then he added the increase, "forty-six thousand students today, and growing."
Rick Rollens of the MIND INSTITUTE spoke and made what I thought were the best comments in the press conference. These were among the things he said:
"Autism is epidemic in this state as it is throughout the country."
"Autism population is skewed dramatically toward young children."
"Eight-four percent of the autism population is under the age of 21."
"More six and seven year olds in the system than all the adults with autism combined."
None of this sounds like your version of no real increase---expanded definition. And if we look at this report from CBS News from two years ago, it's even worse.
Adults with Autism (Watch the CBS news story here.) The lead remark in the story was, "The adult population with autism is about to explode." Reporter Maggie Rodriguez announced, "It's only a matter of time before we're facing a crisis in adult services. There may not be enough work to go around." Even Alison Singer bemoaned the fact that "there's going to be a tidal wave of people with autism. We are not ready for that. We as a society are not ready to embrace the one in 150 people who are going to need adult services."
Singer and her entire family are concerned about the future for her autistic daughter.
Gary Mesibov director of TEACCH at the U of NC added, "I don't think anyone at this point can meet this dramatic increase."
THIS MAKES NO SENSE. WHAT HAVE WE BEEN DOING WITH THE AUTISTIC AMERICANS WHO WE'RE TOLD, HAVE ALWAYS BEEN AROUND?
On Nov 13, there was a National Town Hall Meeting about autistic adults. The hub of this meeting was at the U of IL. Fifteen other sites were also included around the US.
News stories covered the meeting:
NOV 13 Kansas City Star (HERE) Adults with autism inspire worries and action.
The KC Star reported, "Each year, tens of thousands of children diagnosed with autism, from mild to severe, enter adulthood and leave the safe confines of schools and their services behind. Then we were told that there is 'the silent tsunami' of autistic youth aging out into adulthood and we read that "the disorder's cause and the reasons for its precipitous rise are not known. The scope of its effects is vast."
In addition, we heard from one parent who said, 'I won't be around forever. I want to know they're safe. I want to know there will be somebody to look after them, that they won't be forgotten and can lead productive lives.'
On Nov 12, from San Diego CA came the news story, Autistic Adults Present A Growing Care Dilemma. (HERE) We heard from a pediatrician who doesn't agree that the numbers aren't increasing. "The increasing number of Americans diagnosed with autism is partly due to an expanding definition of autism. But pediatrician Doris Trauner believes there has been a true increase in the numbers of people with this disability... the result of genetics, environment or a combination of both. We may not know what causes autism, but Trauner says the care dilemma that's caused by autism should be clear by now."
And on Nov 14 came the Examiner piece about the National Town Hall Meeting, An historic event; voting on the future of adults with autism (HERE). This was very interesting. "More than 1000 people discussed vital concerns and staggering statistics about the current state of housing, employment and community life for adults with autism. Via computer technology Chicago was the hub and center for transmission to a large screen where people in the other 15 cities could participate."
There was also a video message from Peter Bell, Executive Vice President for Programs and Services at Autism Speaks; also a father of a son with autism to all the sites of the Town Hall Meeting. He is concerned about the future for his son, just like countless parents across the country.
Dr. Offit, what I can't understand is why any of this is going on. According to you, when CBS reported that the autistic adult population "is about to explode," they meant in name only. Surely there must already be lots of places to accommodate these people. Where have they gone in the past when they were mislabeled as mentally retarded?
It seems that "better diagnosing" doesn't extend to the current older adult population with autism. So how hard would it be to find the 40, 60, and 80 year olds with autism? The criteria for diagnosing autism involves very specific types of behavior, along with deficits in communication and social skills. I work with a number of autistic kids in their late teens and they're not showing signs of losing their symptoms. I can easily imagine that in 20 and 30 years they'll be like they are right now.If there are hundreds of thousands of misdiagnosed older adults with autism in group homes and institutions, why don't we ever see any of them in news coverage? Why aren't all kinds of people looking for them? It would certainly prove your case. None of this makes any sense. Why was the National Town Hall Meeting even held? You've reassured us that no parent needs to be worried. Autistic adults will go where they've always gone.
I'm also bothered by the stories that come out regularly about missing adults with autism. For example:
Sept 13, 2007 ABC-7 Arlington VA, Missing Autistic Man Located (HERE) "A 21-year-old autistic man who spent more than three weeks in jail while his family was searching for him has been released."
Oct 19, 2007 MSNBC, 'God breathed his warm breath down on us' (HERE) "Karen Allen's prayers were answered around 2:30 p.m. Thursday - four days after Jacob, 18, had wandered away during a family hike Sunday in the Dolly Sods Wilderness area of the Monongahela National Forest ."
Jun 18, 2008, KARE-TV Twin Cities, Search is on for missing autistic man (HERE)
"Hundreds of people have joined the search for a missing man who has autism. Keith Kennedy, 25, disappeared from the Trade Lake Camp near Grantsburg, Wisconsin on Sunday night."
Jun 18, 2008 Desert News Missing autistic man found in Oakley (HERE) "Frustrated by his autism, Justin Bailey, 20, wrote his family a note and walked out the door of his Kamas home on Sunday afternoon. Originally called a suicide note, the letter Bailey left "expressed displeasure with his situation," said Summit County sheriff's detective Josh Wall."
July 18, 2008 KSL-TV Salt Lake City, Missing autistic man found in Salt Lake
(HERE)" A 19-year-old autistic man from Vernal, missing since Tuesday, has been found in Salt Lake ."
Nov 16, 2009 Chicago Sun-Time, Missing autistic man found in Crest Hill (HERE) "Police in Crest Hill found a 22-year-old autistic man wandering around the southwest suburb Monday, about 20 miles from where he had been reported missing Sunday."
You'll notice that all these stories are about people in their twenties or late teens. I'm not being selective here. There simply aren't stories out there on missing autistic adults in their 40s, 50s, and 60s. Can you explain that to me? Do older adults with autism not wander away or do they just not get news coverage?
Dr. Offit, I hope you'll continue to be available for interviews as this issue takes center stage like you have been in the past whenever the question of vaccines and autism came up. Recent reports like the following ones, make it clear the topic of adults with autism is going to be with us long into the future.
Nov 16, 2009, Parsippany family's struggle with autism a common challenge
(HERE) "In December 2007, the most recent year for which statistics were available, the [NJ] Department of Education counted 8,800 students with autism. Nationally, more than 250,000 students with autism were in schools in 2006-07, more than a 600 percent increase over a decade, according to the National Center for Education Statistics . And a 2007 National Survey of Child Health estimated that more than 680,000 children aged 2 to 17 have some form of autism - a rate of 1 out of every 91 children."
Nov 17, 2009, N.J. adults with autism to receive better protection, improved services under Assembly bill (HERE) "Much of the focus on autism has dealt with children, Roberts said. But he believes there is a 'growing need" to provide a better quality of life for adults who have the disorder. 'It will cost taxpayers severely if adults with autism do not get the services they need to live as independently as possible,' Roberts said."
Nov 20, from NorthJersey.com: The Record: Adults with autism (HERE) 'When I look out into the adult services world, what do I see?' a mother of a 21-year-old with autism asks in the report. 'I see no funding, no services, no day programs, no supports for employment, no appropriate health services, no access to transportation and ridiculously long waiting lists for residential.'
Finally from Pennsylvania, Nov 18, PA Governor Rendell announced the result of his autism census. The numbers are expected to only get worse for the people in your state. Clearly with the expanded criteria established for diagnosing autism in place for several years now, these numbers shouldn't be increasing like this. There are only frightening findings in this the press release from Gov. Rendell: New Report Shows Demand for Autism Services will Continue to Rise: (HERE) "Pennsylvania is expected to see a continued rise in the number of children and adults living with autism, according to the Pennsylvania Autism Census Project Final Report released today by Governor Edward G. Rendell. 'Prior to this study, we had no accurate means to determine how many families were potentially in need of services and support,' said Governor Rendell. 'As we worked to determine who these families were and where they lived, our sense that Pennsylvania faces a very real crisis was confirmed.'
''In 2005, an estimated 20,000 Pennsylvanians were living with autism. The report predicts the number will grow to at least 25,000 by 2010. While the number of children diagnosed continues to rise, the report details an expected dramatic increase in the number of adults with autism. According to the report:
• In 2005, more than 1,400 Pennsylvania adults were living with autism - just over seven percent of the total autism population in the state.
• That number is expected to increase by 179 percent to more than 3,800 in 2010 and to more than 10,000 by 2015."
The governor of PA said that in 2005, only seven percent of the autism population were adults. Where are adult numbers to equal this number of children with autism? No one is able to prove to us that autism affects Americans of all age groups at the same rate because it seems, the huge adult population with autism simply isn't there.
Rendell Pledges More Help For Autistic (VIDEO HERE)
5 Spot: State Autism Census Released (VIDEO HERE).
If autism affects adults at the same rate as children and this census went looking for them, why are adults projected to make up only 3,800 of the 25,000 cases of autism by next year? Maybe we should ask Gov Rendell if he thinks it's all just a change in the definition and greater recognition by doctors.
On a more personal note, two weeks ago, I was at a meeting about regional autism services available in West Central Wisconsin . Most of the focus was on children's needs but I did manage to corner a state official and ask him what WI was providing for autistic adults. (As the mother of a 23 year old son with autism, this is of great interest to me.) The best response I could get from him was that help for adults was "severely lacking" and that they'd be working on it.
Comments made this night were pretty much what I've heard whenever I've been at meetings in the last four years. I've been in contact with countless people who work with disabled adults and much of the time I felt like I was the only person in the room who understood what I was talking about.
People with years of experience working with mentally retarded adults don't know what to do for someone with autism. I've had so many ask me questions that indicate they have little or no experience or training in autism. I see a very scary future for the hundreds of thousands of autistic children entering adulthood in the coming years. We are a society totally unprepared for this "approaching tidal wave," as it's often called.
Finally, these are the 2008 US Department of Education autism figures: (HERE)
Age 6 to 11 161,121
Age 12 to 17 112,913
Age 18 to 21 18,604
If Asperger's Syndrome was added as a diagnosis in 1994 that might in account for a surge in autism among teenagers, but the numbers shouldn't continue to increase.
In 2005, our rate was one in 166, in 2007 it became one in 150, along with one in every 98 boys. As of this year, it's now one in every 91 children, one in every 58 boys. The rate in Britain is now one in every 60 kids, one in every 38 boys. Two years from now, can we expect a similar increase when they again update the US rate? When will these figures cause anyone to worry? When it gets to be one in 30? One in 10?
Within the next couple of years, these kids will start to overwhelm social services and welfare funds. Five years from now, I can guarantee that we'll be able to find lots of adults with autism. Problem is, they'll be young adults in their 20s and they'll have no place to go.
I hope experts like yourself continue to get coverage. You'll be the ones we'll turn to for answers when we realize the enormous cost of autism, promising to equal that of any war our country has ever fought. Most of all, people will want to know why none of the experts so often cited told us all these disabled adults were coming.
Mother of an autistic son
Media editor: Age of Autism