Autism And Adults: Awareness Is Just the Start
By Anne Dachel
Back on April 12, NBC News aired the troubling story, 'On the Brink' about autistic students aging out of school.
It was about two young men leaving high school with basically no place to go. Afterwards the mother of one of the boys, Mary Clancy, found herself being invited to Washington to testify after the broadcast.
U.S. Rep Mike Doyle, (D- PA) and U.S. Rep Chris Smith, (R-NJ) are part of the Congressional Coalition for Autism Research and Education. They saw the Dateline show and they invited Mary Clancey to DC. Dateline contacted Doyle and Smith to see what Congress planned to do about this problem.
It seems that experts have learned that "young adults with autism continue to need support," according to Dr. Paul Shattuck at Drexel Autism Institute, which seems pretty much a no-brainer to any one who's familiar with autistic children.
How many times have parents contacted their representatives in Washington asking for action on autism an received only lip service?
Congress silently looked on as the autism rate exploded with no end in sight and no rational explanation given. Doyle said that they've been aware of "this issue" for quite a while. He thinks there's "a role" for the feds to play in this. He thinks having Mary Clancy speaking at the congressional briefing is "a good start." (After all, according to Doyle, "Sometimes you just need a push here in Congress.")
A LITTLE PUSH? A GOOD START?
How many years has Congress done nothing to address autism?
The truth is Congress is too scared to honestly tackle autism. Despite holding hearings, briefings, and creating the Interagency Autism Coordinating Committee, THE PLAN IS TO DO NOTHING. Any recognition of autism as the health care emergency that it clearly is demands that someone explain why this is happening. The cause of autism can't be seriously explored. The rate increases will never be called an epidemic. We're just going to plod along like this with feigned concern and no action until finally an economic disaster is dumped on the states as a million disabled children become adults.
See my stories on the Interagency Autism Coordinating Committee and on Dr. Thomas Insel:
Dr. Tom Insel's Snail's Pace Approach to the Autism ...
Best of: Examining Dr. Tom Insel's Fine Clothes - AGE OF ...
Dr. Tom Insel on Autism: "If There Is a True Increase.." IF ...
Will Congressional Autism Hearings Be Different This Time ...
(Also see my story on a U.S. Senate Subcommittee hearing on environmental causes for autism back in 2010.)
This tone of the NBC story is chilling. Having followed the government's actions on autism for years and having gone to Washington twice over ten years ago, like so many parents, I can say emphatically that Congress doesn't really care about autism. Doyle declared that the briefing was "a good start."
A start to what?
NBC reporter Kate Snow didn't even include the current autism rate in this piece nor did she mention the frightening number--500,000 young adults--who will be aging out of school in the next decade. The word "crisis" doesn't appear even once in her coverage. (NBC News has consistently assured us that all the autism everywhere may be no real increase at all--just better diagnosing.)
The media has covered up what autism has done to two generations of children while Washington looked the other way.
(Three years ago when the rate went to one in every 88 children, Doyle and Smith were at a congressional briefing with Autism Speaks people and representatives from the CDC. In 2012, as usual, the CDC wasn't sure if there was really an increase in the number of affected children. See Dan Olmsted's story:)
THE MESSAGE IS CLEAR: WHEN YOUR CHILD WITH AUTISM BECOMES AN ADULT, THERE IS NOTHING FOR HIM OR HER. WASHINGTON IS CLUELESS. THEY ARE GOING TO TRY TO FIGURE SOMETHING OUT. JUST BE PATIENT AND REMEMBER, NO ONE IS REALLY WORRIED. THINGS WILL TURN OUT FINE.
April 24, 2015, Autism Awareness Advocate's Journey From 'On the Brink' to on the Hill
Mary Clancy is not a lawmaker or a policy wonk or a professor. So when the office of Congressman Mike Doyle, a Pennsylvania Democrat, called last week and asked if she would take the train to Washington, D.C. from her home in New York to speak in front of members of the Congress, she was more than a little nervous. . . .
The invitation to speak on Capitol Hill on Thursday came about through a chain of events that also involved NBC News.
Doyle, Rep. Chris Smith, R-N.J., and the Congressional Coalition for Autism Research and Education had already been planning to host a briefing on the transition faced by young adults with autism. But then they saw Clancy and her son featured in reports on the Today Show and NBCNews.com and a full hour of Dateline, called "On the Brink". . . .
The Dateline report caused a flood of reaction online and in social media. NBC News reached out to Doyle's office after the broadcast to check in and see if there was any congressional action planned to help young adults with autism.
Doyle had seen the report and invited Clancy to speak at the briefing. . . .
Dr. Paul Shattuck, leader of the course outcomes research program at the A.J. Drexel Autism Institute, stressed that young adults with autism continue to need support.
"We believe that people on the autism spectrum are valuable members of our communities. They have roles to play, dreams to pursue. And they have things to contribute," Shattuck said. "The big challenge is creating opportunities for people to participate and contribute in society and unlock their potential." . . .
"We here in the congressional autism caucus, we've been aware of this issue for a long time," Doyle told the gathering. "And we really think the federal government has a role to play with autism spectrum disorders. We have a role to make sure that people can become independent and self-sufficient to the extent that they can."
Of course Katie Wright is the real expert on government malfeasance when it comes to autism inaction.
Katie Wright: IACC and Regressive Autism - AGE OF AUTISM
Katie Wright: IACC Public Members Disappoint - Age of Autism
Katie Wright on IACC. Zero. Point. Zero. - AGE OF AUTISM
Katie Wright on IACC Vs. GAO Report - AGE OF AUTISM
Katie Wright on the GAO Report on Autism Research Versus ...
Anne Dachel is Media Editor for Age of Autism and author of The Big Autism Cover-Up: How and Why the Media Is Lying to the American Public, which is on sale now from Skyhorse Publishing.
I wish my 41 year old son was high functioning but he needs one on one and with minimal speech and also intellectual disabilities, autism, mental health issues and health issues, I am living day to day in trying to keep him together. Programs in Texas are designed for mom to bring the individual home and there is no support for having the individual live in the community. Even though so disabled, my son has lived in his own apartment for close to 20 years with companion care and day programs so he never is left alone. He can't live alone at all. At the age of nearly 77 I don't know how long I can take this. Martha
Posted by: Martha | April 30, 2015 at 12:16 AM
I believe it will be a hell of a long time before congress will address the issue. Because most know what the real truth is. My son is 31 and I have medical records that show and state he was fine until his shots. Then those shots changed everything. In the past I have sent all records and information to DC. Just excuses with no answers.
Posted by: mandy | April 29, 2015 at 04:52 PM
And the walls came down, all the way to hell
Never saw them when they're standing, never saw them when they fell
Its the same in the UK no real help and the adults are just hung out to dry and dry they do along with everyone else who is trying to support them.The profiteers from the poisons they injected into our babes don't want to spoil the great life they are having...I hope they all choke and die ...
Eileen my heart sunk a bit as it always does when I hear of someone that has an adult child in the era you quote but then I take heart and realise you are still fighting on as my wife and I shall do until we die. We are just 50 year old spring chickens with a son of 17 years old.
Thanks for your posts and I will now look up the books on amazon.
MMR RIP
Posted by: Angus Files | April 29, 2015 at 03:41 PM
I think we need to add some new elections. Not elections to give them their jobs. Additional elections to vote on whether they deserve to get paid and continue in their jobs. You know, like a performance evaluation that most employees get. Except if they don't pass, they don't get a penny AND they get thrown out.
During all elections where jobs are awarded by the people, we could elect understudies of a sort. These people would be ready to take the jobs of those who do not perform to the people's satisfaction according to performance evaluation elections. There would be rules that would restrict the stand-by's ability to affect those they would replace to avoid sabotage in order to gain power.
With this public empowerment system in place, I highly doubt that SB277 would have gotten this far and members of Congress wouldn't be able to get away with making believe that they're working.
Posted by: Linda1 | April 29, 2015 at 10:31 AM
My autistic son in 52 years old. He lives in a group home for schizophrenic men. He is high functioning and capable of doing useful work. My requests for a supported work program have fallen on deaf ears. Instead he attends a week-day program where they read the papers, listen to music, do artwork, and are allowed one cigarette per hour on the hour.
Many people still ask why he can't come home and live with my husband and me. We are in our 70s, recently sold our house, downsized into a small apartment, and hope we have enough savings to manage up to a decade longer on this earth.
For 50 years I have been investigating how my son's injuries from a difficult birth affected language development, led to repetitive movement disorder, and diminished awareness and attention. I commented earlier this morning on William Gaunt's Science Versus Science on AoA. The brain impairments responsible for developmental language disorder should have been recognized decades ago. I will keep pointing out the article by WF Windle in the October 1969 issue of the Scientific American on brain damage by asphyxia at birth.
I wish I could speak to congress about autism. I receive only form letters from my legislators in return for my requests to meet with them. I have attended IACC meetings since 2003, where I am allowed to make a 3-minute comment, but discussion is quickly cut off.
I will continue to try to become part of the conversation. I have published my ebooks on amazon.com and barnesandnoble.com. Search for inferior colliculus. My son co-authored two of these books with me. My hope is that ebooks will be more permanent than those in print.
Posted by: Eileen Nicole Simon | April 29, 2015 at 08:55 AM
U.S. Rep Mike Doyle, (D- PA):
"We here in the congressional autism caucus, we've been aware of this issue for a long time," ... "And we really think the federal government has a role to play with autism spectrum disorders. We have a role to make sure that people can become independent and self-sufficient to the extent that they can."
Autism Speaks must be the only organization in the country that believes Congressman Doyle being "aware of this issue for a long time" signifies progress.
"Aware" of what "issue"?
Being "aware" that autism increased from 1 in 10,000 to 1 in 68 today?
Being "aware" that .. according to the Vaccine Adverse Event Reporting System (VAERS) .. "under-reporting" of adverse events is a systemic problem over recent decade .. with less than 10% of adverse reactions actually being reported?
Being "aware" that thimerosal .. believed to have been "removed" from vaccines over a decade ago .. remains in "trace amounts" as well as annual flu vaccines .. most especially for pregnant women and infants?
Being "aware" that legislators throughout the USA are promoting legislation that seeks to deny parents their humanitarian right to "informed consent".. denying them any opportunity to exempt their children from the growing onslaught of vaccines being foistered upon them as a price to attend public schools or day cares?
Being "aware" of the Supreme Court's majority opinion that vaccines are "unavoidably unsafe" .. yet .. upheld a decision requiring all adverse reaction claims be heard in Vaccine Court to the exclusion of all other remedies .. thereby denying parents their Constitutional Right to seek legal redress in federal or state courts?
Rep Doyle should understand he was elected by the people as their representative in Congress .. and .. those people rightly expect him to DO SOMETHING .. most especially when he proud member of the Congressonal autism caucus .. and .. he becomes AWARE of the MANY ISSUES that have generated a wide-spread and growing number of parents across the USA who have lost trust and confidence in our public health bureaucracies and our elected representatives.
In my humble opinion .. being "aware" of the "issues" and not doing anything substantial to address them is worse than not knowing ANYTHING AT ALL. Which is why I have so much disdain for Autism Speaks.
In any event .. historically .. there have been many people held personally accountable for being "aware" of "issues" and not doing anything to correct them .. it is called official "non-feasance" .. or .. turning a blind eye while others suffered needlessly.
Being "aware" of Dr. Thompson's information regarding corruption at the CDC?
Being "aware" of the court proceeding against Merck for fraudulent and corrupt research that .. if proven true .. would constitute a CRIME?
Posted by: Bob moffitt | April 29, 2015 at 07:18 AM