My Side: A Parent’s Take on the Views of NPR’s Autism ‘Experts’

By Donna Jo Kazee

Are We Really Hearing “All Sides” on the Autism Prevalence Issue?

As I sit here reflecting on this Mother’s Day, I’m thinking about this May 2^nd segment on our local NPR station program, All Sides with Ann Fisther. The show presented a panel discussion of the CDC’s new report that shows a 15% increase in autism in the last two years, 150% increase since 2000, “continuing a two-decade increase.” They were attempting to discuss and explain the increase.

Guests were:

• Karen Weintraub, independent health and science journalist, educator, author of “The Autism Revolution: Whole-Body Strategies for Making Life All It Can Be”
• Marc J. Tassé, director, Ohio State University Nisonger Center
• Jacquie Wynn, director, Center for Autism Spectrum Disorder at Nationwide Children’s Hospital
• Emilio Amigo, clinical psychologist and director, Amigo Family Counseling

WOSU Stream

Right away, I was noticing a glaring lack of parents or individuals with autism, so from the start, we know this will not be “all sides” of the autism prevalence issue. Further, all the guests seem to have some financial interest in autism, so an increase in prevalence might be good news to their business. These are the “experts” that are often given full reign to shape the public perception of what is happening with autism.

First, Ms. Weintraub started explaining that the increase was expected, and then provided a disclaimer that this was about 8-year-olds at various locations, so we couldn’t just assume that all 8-year-olds in the US would reflect the 1:59 autism rate. She did say that it was a substantial increase from 20 years ago.

 

This graph, from James Lyons-Weiler, PhD, is adapted from one from SafeMinds, which shows just how dramatically the rate of autism has increased and what the numbers would be if the latest diagnostic criteria (DSM-5), which have been in use since 2014 had been used. As he also points out, any one member of the committees reviewing data from the eleven reporting locations could disqualify a child, effectively ruling out autism, if he or she felt the DSM-IV criteria did not apply or if other diagnoses better identified the child. All of those factors indicate this isn’t just some minor fluke but an actual jump in occurrence.

Dr. Tassé responded to Ms. Fisher’s question about why there was such an increase, saying it was actually not unexpected, by pointing to three primary factors: improvements in the ability to find children with autism by helping families and society learn the signs of it, an effort to help pediatricians better screen for autism at the 18- and 24-month well visits; and a reduction in the gap between white children being diagnosed and black/Hispanic children being diagnosed.

Author Ms. Weintraub then went on to say what a good thing this better diagnosis was because with more minority kids being diagnosed, fewer will be “left behind.” She states that the data don’t really give us any information about the causes of autism or the cause of the increase.

Dr. Tassé then says that the median age of diagnosis is around 4.5 years old, which is way too late for early intervention or making an impact on core features. However, he fails to mention with all the wonderful progress they say is behind the larger numbers – the pediatricians trained to catch signs at 18- and 24-month wellness checks –that the median age of diagnosis only decreased by one month!

“The median age of earliest known ASD diagnosis remained close to 53 months in previous  surveillance  years  and  was  52  months  in  2014.” In fact, the “proportion  of  children  who  received  a  comprehensive  developmental  evaluation  by  age  3  years  was  unchanged:  42%  in  2014  and  43%  during  2006–2012.” Link.

All of these discussions tend to be like experts moving carefully around a giant elephant in the room! They contradict and sidestep. We hear about how awesome diagnosis is the reason for increased prevalence, and the next sentence is about how we need to improve our ability to find and remediate autism because we aren’t catching it early enough, followed by another assertion that autism can be awesome and shouldn’t be changed in any way, followed by another revelation that we are seeing biomarkers in infants and that babies as young as 3 months could be enrolled in intensive therapies to remediate autism because progress can only be made if we can catch autism early.

The “better diagnosis” explanation, has even been ruled out by the CDC, and is not supported by science (see Nevison and Blaxill, 2017).

Ms. Weintraub said the aim is not to find a cure but to diagnose earlier because there is no uniform or obvious cause of autism. Near that point my call was taken, after pre-screening to see what I intended to ask. I explained that I was the mother of a 17-year-old with autism and that my young nephew also had been diagnosed. I asked them to address the staggering costs of autism with services and supports needed over a lifetime. I said I didn’t see how this was sustainable and that I, personally, didn’t believe it was better diagnosis because I don’t have other family members from previous generations who had been diagnosed with autism or any other diagnosis they were claiming had been a substitute for that. I said, even with early intervention, outcomes are still poor. I finished by asking about co-morbid conditions like seizures and said that I personally knew several adults dealing with complex health conditions like mast cell activation syndrome.

Dr. Wynn and the panel agreed that there were tremendous costs because assistance is needed with all aspects of life. She then reiterated how important it was to have early and intensive intervention. She said what the new CDC report does is help us gauge the needs in terms of how much will be required to tackle this, but neither she nor anyone else suggested from where the funding could come, when we already know states are not handling their current needs in this and other societal need created by issues like the opioid crisis. Dr. Tassé agreed that there have to be a lot of agencies involved in each person’s case, with lots of different professionals.

Then Dr. Amigo brought up one of the worst fears parents have: the adult cliff that many people can fall off once they age out of the school system. He talked about his consumers aging and how they needed better systems to connect them with housing, employment, and transportation. He said the issues were often more difficult with age because supports were no longer there.

That segued into the funding issue a bit, and the panel turned to disparities in the way states administered Medicaid funds and insurance coverage for autism. Dr. Wynn said there is a very long waiting list for services, and not a high percentage of people have gotten services, partly because people with other disabilities are also eligible and competing for funds. Dr. Amigo interjected that this is based on need and level of functioning, with priority given to the most severe. Dr. Tassé said with a population of 100,000 people with developmental disabilities in Ohio, the state has only been able to support about 30-35,000. This puts the costs back onto the family. Dr. Amigo said that, even though the average IQ is increasing among people with autism, the effects can be just as debilitating.

The question of where all these adults with autism will live was met with conflicting thoughts as well. Drs. Wynn and Tassé indicated that the age of segregated living was over, and Dr. Tassé was particularly annoyed by what he called a new parent movement to create planned communities. However, Dr. Amigo pushed back, saying intentional communities can be inclusive and still address needs. No one brought up the issues that come with integration: lack of staff to actually support people spread out in different living environments, building a supportive community that understands and accepts the people with autism, elopement and safety in general, training of law enforcement and other public personnel who will be dealing with individuals, lack of transportation to get into the actual community… No one mentioned that it is problems with inadequate community supports that often create safety and legal difficulties.

Dr. Wynn then lamented the sheltered workshops, which she said were on the way out, and championed the idea of businesses just employing people and developing places for them to thrive. This is not a new idea; I am a biomedical engineer who has taught about transition issues for people with disabilities and who worked for some time as a job coach. The sheltered workshops, while they have their own set of issues, sprang out of a need to have something meaningful after “the adult cliff” for people with more significant needs and issues. Disability advocacy groups have taken a hard line against anything that seems to be separate or unequal, but they have done so with little concern or answers for those individuals for whom there will be nothing but family – or in some cases, not even that – to pick up the pieces. They don’t seem to have talked with parents of or people who enjoy going somewhere during the day or having a supported job experience, or parents who are able to work and have respite during that short time.

Dr. Amigo did mention families, saying there are enormous family stresses and supports needed for wrap-around solutions in housing, recreation, and employment. Dr. Amigo has capitalized on some funding that looks at those types of solutions, and his relatively small group of adults have a quarterly big event, which one year was a prom that was featured in a documentary. I have seen some very innovative pilot programs like this, but they are limited in scope and often not continued because the funding dries up or is diverted into the next area of heightened focus.

As is usually the case, the professionals then railed on society and parents for not allowing adults with autism all the freedoms that are due to all human beings, with no regard to why that might be the case. Dr. Tassé said they need to be given the “dignity of risk.” Dr. Wynn gushed about the self-advocacy movement among people with high-functioning ASD, or Asperger Syndrome, that paints autism as a difference that doesn’t need changing. Dr. Tassé interjected that this helped push against the emphasis on finding a cure because autism didn’t need to be stamped out or cured. All of this begs the question for why professionals like the ones on the panel are even really needed, let alone very early identification and intervention and wraparound services.

Then 88-year-old caller Pat did ask about causes again, saying she grew up near Pittsburgh and didn’t recall even a single person with autism then but that now even her primary care doctor has a child with autism. The experts then launched into how it was called something else then, neglecting to address why Pat or many in her generation don’t recall seeing anyone with the signs and symptoms of autism no matter the label. Dr. Wynn tried to bring up the issue of prevalence versus incidence, citing a California study that tried to determine if autism was increasing, that found that some people may have been diagnosed with ADHD and oppositional defiant disorder, but that actually left the door open to the notion that there has been an increase. She said we just don’t know.

Dr. Tassé then talked about the heavy “genetic loading” of autism, even though all of the experts admitted that there was no one gene or even several that had been identified. He said autism is plural, and Dr. Wynn said researchers are working hard to phenotype autism because there must be many candidate genes that work together to cause autism. She said it would be very helpful if we could find which genes cause which symptoms. This echoes similar recommendations by experts like psychologist and professor Simon Baron Cohen, FBA FBPsS, who recently wrote about it being time to give up on a single diagnostic label for autism, but whose research has identified 14 genes that may be associated with Asperger Syndrome alone! [See Slate article on DSM changes in diagnosis – removal of Asperger and ADD].

However, Dr. Lyons-Weiler has warned this will make autism harder to track and harder to make services available. Well, maybe that is the ultimate goal: to make autism so confusing families can’t get proper diagnoses and services are delayed, so that we are in some perpetual game of chasing our collective tails? Certainly confounding professionals and parents who are already scrambling for inadequate services seems to be counterproductive to that goal to identify and intervene early – with the promise that effects can be mitigated. Which in turn, seems to run counter to the idea that people with autism need to be accepted as is?

OK, experts, it’s long past time to offer circular arguments and do something! You have a national crisis on your hands, and you still can’t figure out much. You don’t know what causes it, but it can’t be vaccines. You are sure early diagnosis and intervention are key, but outcomes are still bad and waiting lists for diagnosis and services are so long some people wait YEARS. Then you exalt people with autism who just want to be left alone in their differences. How does that work, since many adults with autism recount the same rigorous, early interventions you prescribe as being torture?

You want to stop intentional communities, which may be the only way some adults are served well over a lifetime, with familiar people and carefully scaffolded and supported living experiences. You want to close sheltered workshops but have no substantial, proven substitutions. You are essentially creating a dead end for people with the most significant symptoms, and you are leaving families devoid of hope.

You have failed us. Miserably. You are talking out both sides of your mouth at all times. And the worst part is that you aren’t even listening to adult autistics who tell you that their health deteriorates, that they have experienced similar issues that parents report – regression and life-altering symptoms – after vaccination and certain medications. We have first-person experiences that cannot be denied. I encourage all of you to read Twilah’s reflections on these issues at https://www.athinkingpatient.com/. “At age thirty-eight, I regressed from level one or Asperger’s type autism to level three autism. This happened as a direct result of a C. Diff infection, several rounds of vancomycin and Dificid, an adverse reaction to the polysorbate 80 in Lupron, a horde of psych meds—some with yet more polysorbate 80, and a handful of vaccines…”  “…I’m not gonna embrace it.”

The problem with your talk of better diagnosis and people no longer being institutionalized is that there still would have been people in families. We know from the work of Kanner, for instance, that not all children especially were immediately institutionalized. His first patients all had environmental exposures that point to the environmental causes of autism. Parents were and are very concerned, and they seek out expert help. And still today, you try to heap blame on them for doing the best they can when there are no clear-cut answers. Every other study points to them for blame: older parents, mothers with gestational diabetes, getting too many ultrasounds… Like the causes, you are certain there’s treatment, but it’s only what you recommend and deem acceptable. Why not recommend or at least call for research on the efficacy of diet and supplementation, chelation, and therapies other than ABA?  To these “experts”, if a child recovers, it’s a fluke if these approaches recover children.  But if Pharma develops a drug, well, that would be different.

Experts, you are complicit in this disaster because you should be the ones shouting loudest for this to be addressed in a meaningful way, for no stone to be left unturned in the pursuit of finding causes and contributing factors to rising autism rates, and for our nation to support the families brought to their knees dealing with autism.

Instead, we get headlines like “Crisis in care | Lack of quality caregivers, constant turnover tough on the disabled, families” with details about how individuals are poorly served or even neglected: “Employees microwaving bread sticks on high for 10 minutes, until they looked like charcoal. Ice cream stored in a kitchen cabinet drawer, Hot Pockets served frozen …  A call from school after one of the 19-year-olds showed up with feces on his hands. Complaints from neighbors who heard screams. A message from a caseworker telling Robinett, who was in a Florida airport at the time, that there would be no one to care for the teens as of 3 p.m. that day because the disability-services agency was in trouble and shutting down.”

Remember that you are calling for earlier diagnosis, intensive early intervention, wraparound services and supports – all with a high price tag – while states are saddled with increasing medical costs due to chronic physical and mental health issues as well as whole communities devastated by the opioid crisis. How does that work? Where are we getting the money to do all of these wonderful things that will mitigate the individual and societal effects of autism? I want actual answers for that question because this is not the time to wax poetical over what should be.

Is it too late to stop this? Do we have time? Do we have the wherewithal to let go of personal differences, assumptions, bad data, collusion, corruption, and basic incompetence long enough to roll up our sleeves and work on the root problem: what is causing the rise in autism prevalence, and, as a mother who loves her child on the spectrum: how do we contain it?

Donna Jo Kazee is mom, biomedical engineer, wife, and social activist who works via The Ohio Advocates for Medical Freedom to protect the rights of patients and parents to choose medical options.