By Anne Dachel
On Nov 29, 2012, many parents of autistic children were focused on the U.S. House Oversight and Government Reform Committee hearing on autism. Legislators expressed disbelief at both the numbers and the fact that officials had no answers, despite years of trying to figure out autism. One of those Congressmen there was U.S. Representative Patrick Meehan from Pennsylvania’s seventh district.
The following two videos show Meehan questioning Dr. Alan Guttmacher, head of the National Institute of Child Health and Human Development at NIH and Dr. Coleen Boyle, director of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at CDC.
1 in 88 Children: A Look Into the Federal Response to Rising Rates of Autism
Patrick Meehan began by saying,“I don’t know of another issue that has affected more of my constituents, that have demonstrated a greater degree of frustration than this particular issue.”
Meehan grilled Dr. Boyle about the explosive rise in autism. “Have you ever seen anything in which there has been such a dramatic progression in the incidence of diagnosis in a six year period, in your experience with the CDC?”
Boyle talked about the issue for several minutes without really giving him an answer..
Meehan tried to get her to tell him “why this is not a public health crisis” to the CDC.
Boyle stammered about the CDC working hard to keep track of the numbers.
Meehan then turned to Dr. Guttmacher from NIH and asked about progress being made in autism. Guttmacher deferred to the Interagency Autism Coordinating Committee created by Congress to deal with autism and said that IACC was busy putting together their end-of-the-year update on autism.
Meehan wanted to know who is supposed to be focused on doing something about autism. Guttmacher pointed to Thomas Insel, head of the IACC. He also said,“It’s extremely important to NIH” in order to make it clear that people in public health cares about autism.
Meehan asked about coming up with timelines and accountability and Guttmacher said that the IACC is already doing that.
According to Guttmacher, the federal governernent is doing a good job addressing autism but Meehan seemed exasperated and said, “I see it as being sort of willy nilly---and this is the next thing that gets funded today.”
Guttmacher countered by saying that there are “multiple parties involved in this who are really quite concerned about this, who work in a regular way to advance this.”
Part II: 1 in 88 Children: A Look Into the Federal Response to Rising Rates of Autism
Meehan sounded frustrated about the fact that “we’ve been at this issue for so long and there’s such a wide divergence, even in the scientific definition of where we are.“
Meehan said the IACC “seems to be missing the mark.”
Bob Wright talked about having “a strategic plan” that coordinates the efforts of the CDC and NIH. Then the conversation turned to including the Dept of Education and the Dept. of Labor and the Dept. of Justice in the plan.
Mr. Scott Badesch said that he’s been at his job as head of the Autism Society of America for a year and a half and he’s never been contacted by IACC.
Meehan asked Mark Blaxill about genetic research and Mark made it clear that genetics alone could never explain the epidemic increase in autism. He went on to describe the ineffective methods used by NIH and the fact that neither the CDC nor NIH has any accountability when it comes to research spending.
All in all, it painted a pretty dismal picture of the state of autism in America. It was interesting to see legislators incredulous at the failure of health officials have any answers about what autism is doing to our children.
Then on Dec 10, 2012, Patrick Meehan called a meeting of local autism advocates and experts in his home district. This was out on his website.
“’After our recent Congressional hearing on this issue, I remain concerned that our national approach to addressing the rising rates of autism is lacking,’ said Meehan. ‘With 1 in 88 children diagnosed with ASD, we must ensure that we are providing the necessary care and services for these children and their families. Today we heard from some local advocates and service organizations that are on the front lines working with those touched by this issue every day.’
“Joining Meehan today were representatives from the Autism Society of America (Philadelphia Chapter), Autism Speaks (Greater Delaware Valley), Center for Autism Research, Melmark, KenCrest Centers, Devereux, Delaware County Arc, Chester County Arc, Delaware County Intermediate Unit, the Chester County Intermediate Unit, and the Montgomery County Intermediate Unit.”
It was obvious that Rep. Meehan was taking the autism issue very seriously.
In Dec, NBC 10 in Philadelphia also interviewed Patrick Meehan about the hearing (starts at 2:00).
Meehan was asked if he thought NIH and the CDC look at autism as “a concern or as a crisis.”
Meehan: “No, I don’t believe that there’s the recognition that I am finding. I have to tell you that I been not just alarmed but almost stunned by the appreciation of how broad the impact is of autism—the growth that we’ve seen over the course of the last decade. What had been one in hundreds is now diagnosed one in 88, one in 54 boys. …The question I asked, Is this just a health care concern or is it an epidemic?”
Interviewer: “I watched that hearing and I don’t think you got an answer from them.”
Meehan: “I was not satisfied with the answer. I think what we saw again was bureaucratic retreat again to ‘Well, we’re doing the best we can.’”
Interviewer: “What can we do?”
Meehan: “There needs to be more of a strategic plan. …Right now they put people together and they’re sort of collaborating, but nobody [is] in charge. And I asked that question, ‘When we wake up today, one in 88 children is being diagnosed, who’s responsible for looking at that?’ And they all pointed to somebody else. …With something this significant, what I want to see is somebody who wakes up in the morning and says,‘This is my job.’”
Interviewer: “There is a movement underway…to redefine autism. …The new DSM 5 by the American Psychiatric Association has autism spectrum disorder and there are people in the community who are concerned that this will actually affect how they get educational support, how they get medical support, what the insurance companies will do. Maybe it’s a clever way of trying to address that one in 88 number, toget it to be one in 110 again or something.”
Meehan: “I think that what they will tell you is that it will create the ability to have more accurate diagnoses and that more children will actually be recognized in that spectrum. It should help clarify things. One of the realities I’m seeing is that parents are frustrated with different reactions from different agencies that have responsibilities. ….Hopefully this leads to some sort of a simplification, not more ambiguity.”
The interviewer asked about mercury in vaccines.
Meehan: “That’s a question that I’m not prepared to be able to answer. The experts who are working on this in the health care field are concerned that it’ll also have an impact in having people not take vaccines. So education of the right solution is there. The real question related to vaccines is,‘What role does that play in causation?’ That’s what we need to understand.”
The interviewer brought up the environment and “people who live closer to freeways…closer to nitrogen dioxide… Is politics getting in the way of finding an answer to autism?”
The interviewer talked about the young people hitting age 21.
Meehan: “Many of these parents are saying, what happens to my child after 21? In addition, what happens to my child, after I’m gone?”
All this response from Meehan was very encouraging to parents in the autism community who mostly feel that all they get from the federal government is lip service and inaction. I also found two news reports on the meeting held on Dec 10, 2012, I read about Sue Tuckerman, mother of 15 year old autistic twins and a representative of the Autism Society of America
In one story she was quoted saying, "The world is not ready for these adults with autism. It's frightful. We hope that there is some hope for some degree of self-sufficiency.”
In a second story Tuckerman said, “There’s so much that needs to be done.”
I was able to contact Sue Tuckerman and ask her about the meeting and about how she thought Rep Meehan was handling this issue. This is what was discussed.
Q: “Sue, were you surprised by this meeting so soon after the House Reform Committee autism hearing?"Sue: “I didn’t really think much about it at the time. I’m pretty busy with the kids so things slip by, but I have waited over twelve years for something to happen.”
Q: “During the two hour meeting, what were the biggest concerns expressed by parents?”
Sue: “The meeting was actually a meeting of professionals. I was there representing the Philly Chapter of the Autism Society of America. To my knowledge, the only other parent there was one that worked in the field of research. I spoke of my troubles with the current system and services or lack thereof, and mostly about my fear of the future, not just for my two sons but for our entire family (including my youngest son who does no t have ASD). Many professionals talked about ‘the broken system or systems’ that simply don’t work---and especially not together. Families are stuck in the middle, trying to figure it all out and make the best of a lousy situation.”
Q: “Do you feel that Rep Meehan will be able to wake Washington up to the autism crisis in America?”
Sue: “I think that almost everyone knows someone with autism and that will help. Rep. Meehan said that the level of frustration that families have expressed exceeds that of anything else constituents have shared with him. Meehan seemed to understand that the system(s) are not working and that things just are not right. I think that he is perplexed by just how disjointed everything is, just like we all are. He has seen families dealing with frustration and he wants to help. Meehan did comment that this is an issue that all POLITICAL parties have an interest in and that there doesn’t seem to be a divide, which is a big help. I think people are starting to understand that there is a problem and that there needs to be a leader in this fight.”
Q: “Sue, you were quoted at the meeting saying, ‘The world is not ready for these adults with autism. It's frightful. We hope that there is some hope for some degree of self-sufficiency for autistic children who age out of government funded education programs.’
“Your words point out the reality that when we talk about autism, we’re always talking about children with autism. That will be changing in the next few years as tens of thousands of young Americans with autism age out of school with no place to go. Meehan promised only that ‘improvements to the funding and services puzzle will come in small victories.’ Will this be enough?”
Sue: “I think it’s a start. As all families with loved ones with autism know, every little baby step is progress. We do need sweeping change, but again, we have to start somewhere. I do think that everyone will have to work together. This is not something that the government can do alone. It’s not something that families can do alone. We will all need to take a long hard and honest look at what is going on--- environment, food, how we are diagnosing, treating, planning, etc. We need to prepare for the future for those who will be aging out of the educational system as well as make improvements to the current children’s system. There are many needs in the autism community and most are urgent.
Q: “What would you like to see Washington do about autism?”
Sue: “We need to look at everything from the cause, treatment options, what to do now, how do we fix a broken system and how do we fund help for autism. There is no quick fix but we have to start somewhere. We need to look at what makes sense.”
Q: “What do you feel was the best part of the discussion with Rep Meehan?”
Sue: “The fact that the conversation happened in the first place! That fact that he seemed to be questioning how things could be the way they are.”
Q: “Will you have ongoing contact with Rep Meehan?”
Sue: “I hope that these dialogues continue. There was nothing definite set but I suspect there will be.”
I would ask Rep Meehan to do something else in his home district. I’d like to him visit a couple of grade schools in his district and talk to veteran teachers. Ask people who’ve been teaching 30 or more years about what they’ve seen happening to kids. I’d ask him to think back to when he was a child. How many children did he know with the behavioral, communication, and learning issues that are so common today? Did he observe other kids who rock, flap their hands, were non-verbal, and needed constant care? At the rate we’re going, in another generation, we won’t remember a world where over one percent of the population didn’t have autism, including almost two percent of males alone. The big question will be, how will we pay for all those affected?