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Parents panicking over vaccines, growing numbers of autism diagnoses and a ton of misinformation have blurred what the real focus should be – helping children with autistic spectrum disorder, says Dr. Bryna Siegel.
That’s why she decided to write The Politics of Autism (Oxford University Press, 2018), a new book looking at how the system of caring for kids with autism is flawed.
The Bay Area resident has spent 40 years working on autism diagnosis, education and treatment. She is founder and executive director of the Autism Center of Northern California, and a retired professor of Child and Adolescent Psychiatry at the University of California, San Francisco.
One of the biggest problems is there is no system that helps parents understand how they can help their children with autism. They end up depending on a lot of misinformation they find on the internet, she says.
Siegel talked with Bay Area Parent about her new book and the changes that need to be made.
What are some of the big misconceptions?
In the media, you hear a lot about the people with autism who are high functioning, quirky individuals – people like in the Bing Bang Theory on TV – as if it’s a special power. That really is not autism. A lot of people with autism test with subnormal or below average intellectual capacity.
Most people with autism are not high functioning, but most are not low functioning. There is the image of the child who needs to be institutionalized because all he does is sit in a corner and bang his head, make loud noises and flap his hands. There are very few like that either. Most kids are medium functioning.
Another misconception is that autism is caused by vaccines. Autism is not caused by vaccines. We’ve wasted too much money proving that over and over again. There was never anything to support this in the first place.
Another misconception is autism is genetic; that makes many people think that one of the parents has to be a little bit autistic. What we’ve learned is there isn’t just one type of autism that runs in families. Of the 150 genes that have been identified, virtually none of them occur only in people with autism diagnosis.
Also, no symptom of autism is unique to autism. All symptoms can occur in other disorders. Some of the symptoms of ADHD are the same as autism. As diagnosticians, we were told you can’t write both down on the same sheet of paper. Now we have the problem of whether to diagnose ADHD first or autism. If you’re a little kid, there are costly, effective programs available if you have autism, but not available if you have ADHD. So, you can guess which one is going to get diagnosed first. I call it diagnosing for dollars.
What are some of the key mistakes being made in autism education?
We have a lot of children with autism whose parents opt to put them in full inclusion. You’re entitled to have your child stay there unless he is compromising the ability of typically-developing peers to be educated. I’ve seen situations where a child with autism is in a class, but he has two aides – one to monitor his behavior and one to administering his curriculum.
I think it’s a shame. That child is being deprived of the opportunity to learn what he needs to learn. For example, a child who is 8 years old. The research tells us that if that child is using only a handful of words and is only using them when he’s prompted to use them, that child is not going to be a child who speaks in sentences. Yet an 8-year-old in a classroom should be able to speak in sentences. If you put a child who doesn’t understand language into a second-grade class because he’s 8 years old, you’re depriving that child of a special education if he’s understanding language like a 3-year-old. It’s like taking a 3-year-old and insisting he can’t go to preschool and do things that 3-year-olds learn from, but he must sit in a second-grade class all day long.
I think for parents it sometimes feels like: How will my child ever be a part of society if he doesn’t spend time with his age-appropriate peers? There is something to be said for that, but I don’t think we have the right to forgo that child’s opportunity to have a special education. That child can go to an after-school program and participate in recreation programs where he’s with his non-handicapped peers.
When we look at the number of adults living at home and who are unemployed or underemployed, we have to ask: What should we be teaching them instead?
Nobody gives parents a vision of what their child can do. We don’t have a kind of doctor who looks at the research on what happens to people with autism when they grow up. I think we need to bring back vocational education. We need to get an idea of what kind of skills they have to excel at. We need to teach a child to his strengths. We need to teach things that give them a good quality of life.
Why has there been an increase in autism diagnoses?
There’s a lot of pie chart kids out there – kids who have multiple things. They need criteria for multiple diagnoses. If you put autism at the top of the list, you’re going to get the treatments for autism. There are a lot of good treatments for autism.
Another thing is a lot of the studies, including the studies from the Centers for Disease Control, are not well done. Increasingly, we have kids diagnosed early. Once they are counted, they are not followed up on. The good news is that early programs can be very effective. Once they are 5 or 6, they may not be considered autistic any more.
Many kids are being diagnosed with autism before there’s a chance for these other disorders to be expressed. ADHD is not diagnosed in a 2-year-old, but certainly, by the time the child goes to kindergarten, we can tell who he is.
Why is the theory that vaccines cause autism flawed?
This started with a guy named Andrew Wakefield. He published an article in a very important medical journal called Lancet. He reported on a small group of boys who had leaky gut; he said their symptoms of autism started when they were vaccinated. Long story short, within a period of a few years, it turned out that Wakefield had been paid around $800,000 by a law firm to come up with cases that showed that vaccines caused autism. It turned out some of his data was falsified. He had to print a retraction in Lancet. The article was withdrawn. The editor of Lancet almost lost his job. Wakefield lost his medical license in the UK.
What’s behind excessive costs for some autism treatments? How can it be changed?
What’s happened is insurance companies are paying for these very costly programs which can cost up to $60,000 per year for a kid.
The companies providing this kind of treatment are the ones being asked by the insurance companies: Is he or she (child with autism) still making progress? They always say, yes. They can always point to something the child is doing. It’s not objective.
The model I think we should be following is what happens with rehab therapy. If someone has a stroke or car accident or brain injury and needs therapy, they get it and their therapist, every four weeks, has to do a standardized evaluation to prove to the insurance company that the patient is making progress. I think we need a system like this. Otherwise, we have parents and it’s the first time they’ve seen their child learn, so they are reluctant to give up this treatment and try other methodologies that may work better.
Teresa Mills-Faraudo is an associate editor at Bay Area Parent.
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