"The Answer Sheet"
By Valerie Strauss
December 14, 2018
Bryna Siegel is an expert on autism who has long been controversial for her blunt talk and unconventional views about the disorder. In this post, she is as blunt as ever, arguing that most of the money that goes toward autism research is not helping families deal with the disorder — and why that should be made a focus.
Siegel is a professor emeritus of child and adolescent psychology at the University of California at San Francisco and founder and executive director of the Autism Center of Northern California. She is also author of the 2018 book “The Politics of Autism.”
Autism spectrum disorder is a developmental disability that can cause significant social, communication and behavioral challenges, according to the Centers for Disease Control and Prevention. The CDC earlier this year increased its estimate of autism’s prevalence among the nation’s 8-year-olds in 2014 to 1 in 59; its previous estimate was 1 in 85.
Siegel questions how those estimates are made and, in her book, argues against reflexively “mainstreaming” students with moderate to severe disabilities. Mainstreaming calls for placing those with moderate to severe learning impairments in classrooms with children of the same age who do not have disabilities.
She says most would do better in special classrooms where they receive “daily living skills” training.
Siegel says American communities offer little to no support to families living with the disorder and that this need gets short-shrift by funders of research who support studies of the brain and human genes. While such basic research is important, she said more money must go toward creating systems that can help families.
She writes in the book:
At the end of 2013, I retired from UCSF after 24 years of running an autism clinic, doing research on identification and diagnosis, writing and lecturing for parents and teachers, and collaborating with colleagues in genetics and neurology, who someday, I hope, will achieve the holy grail of autism —prevention or medical remediation. But I knew I was not done yet working in the field.
My heart was in helping families better parent their children with autism and developing a model for an “autism home” — a place families could come back to for continuity of care, where the clinicians know them and their child (or now teen or adult), and know what had worked and what hadn’t worked.
Too many families I knew felt that they were on their own after the diagnosis, when in fact their need for support and guidance was just beginning. I knew that if the diagnosing clinician never saw a child again after giving the family a diagnosis of autism, that clinician would be in a very limited position to discuss prognosis. To provide prognosis, you must be able to factor in treatment response.
Presently, there is not much out there in the way of continuity of care for families living with autism. Parents need a place to get continuing care — so they know if they are doing the right thing. Parents need to know if their child is not improving as much as ideally hoped and why that might be. Parents need a relationship with a professional who has seen where their child has come from and what has been tried, who can say what else should be tried or can say, “You’re doing all you can do and doing it well.”
Believe me, without that support, the guilt of believing there must have been something missed exists in every parent with a child who carries a diagnosis of autism.Here’s her piece:
By Bryna Siegel
It’s a staggering truth: Most dollars that have been spent on autism research in the United States over the last four decades are not helping children with autism.
Federal data shows that $342 million was spent on autism research in 2015, the latest available information. There was far less some 30 years ago when the incidence of autism was reported to be about 1 in 400, but research dollars and incidence reports have climbed in tandem, just as treatment dollars and incidence reports have climbed in tandem.
The single most heavily funded area of autism research across the last 20-30 years has been autism genetics. Brain science also receives a significant portion of funds. Genetics and brain science are very important fields; no one questions that this work needs to be undertaken. Still, none of this work is likely to help those now living with autism spectrum disorders (ASDs) or their families.
Present spending on autism research has almost no practical value: First, we still cannot look at the brain of an individual with autism, find something to alter, alter it, and see improvements in the symptoms of autism.
Second, there are no meaningful genetic tests for autism risk recurrence — though many families falsely believe that tests like an amniocentesis can predict whether a child will have autism.
Third, despite hypotheses that certain brain regions identified in autism research can be ‘normalized’ through behavioral interventions or psychoactive medicines, there is virtually no evidence that this is indeed the case.
While we are learning a great deal about how certain genes make different kinds of neurons and brain chemicals through current autism research spending, in truth, these discoveries may be just as pertinent to conditions such as learning, language, and intellectual disabilities as they are to autism. Thus, although dubbed “autism research,” the focus is much broader.
At the same time, only 25 percent of research funds were directed toward the initiatives that will actually improve the day-to-day experiences of those on the spectrum and their loved ones. That is, the development of treatments and services to help with daily living and meaningful societal activity-from helping those with ASDs be able to care for themselves, participate in family and community life, and then participate vocationally to the extent that they can.
This needs to increase because outcomes for those with autism are not good enough: More than 4 in 5 adults with autism live with parents. Little more than half have held a job and up to 90 percent are unemployed or underemployed. Only one-third have attained postsecondary education.
This is despite ever increasing sums spent on autism special education, mostly without substantial research to identify which methodologies work best across this wide spectrum.
We have spent huge sums on vaunted methods such as intensive behavioral programs and educational inclusion driven by feel-good stories but without backup from empirical studies that can guide us as to when these techniques are most likely to accrue positive outcomes — and when they aren’t. We need research to guide us.
Crucially, a mere 2 percent of autism research is funded to understand how autism, as a chronic disorder, develops over a lifetime. Autism is a chronic disorder. Failing to take that into account in allocating research dollars as we are currently doing means failing to prepare those with ASDs for their future.
Virtually no money is prioritized to develop models of life care for the majority of adults living with parents — and who can be expected to outlive them. These statistics are not good enough for a community capable and deserving of so much more.
To meaningfully support the autism community, future funding for services and treatments should include explorations of which educational, behavioral and milieu techniques work best — and of which symptoms they best address, at which ages.
The autism spectrum is broad, so we need research to guide us on whether and when to focus on core academics — versus when to focus on life skills such as self-care and becoming a helping family member. Core academics will prepare children for postsecondary education.
But which children with ASDs will truly benefit? We need to find out. A focus on life skills may be a far more appropriate tactic for those with more enduring disability so that they, too, can become meaningful contributors to their communities. And we need vocational education, including work training, job sampling and apprenticeship opportunities, as well as research on matching jobs to the vocation aptitudes of people on the autism spectrum.
With education better tailored to the realities of autism, appropriate job training and the right long-term support and care, people with autism could lead healthier, better-integrated and ultimately, happier lives — which would, of course, increase their families’ peace of mind.
Finding a way to balance basic genetic and other neuroscience research, now funded as autism research, with high-quality autism treatment research would be an excellent, and well-needed, first step in this direction.