The proposed NY State “Autism Council”

There is now a bill that has been introduced in the New York State Senate, S04750, which would establish a New York State Autism Council. I see some big problems with that bill.

A woman I met at one of the Manhattan adult ASD support groups has sent me email with a link to information about S04750 on LegiScan, which in turn led me to information about S04750, on the NY State Assembly website. (I’m not sure why it’s on the NY State Assembly website when, so far, it’s just an NY State Senate bill and hasn’t gone to the Assembly yet, as far as I can tell.)

The meat of the bill (after preliminary definitions) begins as follows:

The council shall be composed of sixteen members as follows:
a. a representative of the department of health;
b. a representative of the department of education;
c. a representative of the office for people with developmental disabilities;
d. a representative of the department of financial services;
e. a representative of the office of children and family services;
f. a representative from New York Families for Autistic Children (NYFAC);

§ 461. 1.

That’s odd. Why New York Families for Autistic Children (NYFAC) — and NOT any of various other similar organizations?

NYFAC is a private nonprofit parent-run organization that provides services (mostly government-funded) for autistic children. It’s not the only organization of its kind. There are other private non-profit organizations, such as Quality Services for the Autism Community (QSAC), that provide similar services for autistic children — and some services for (at least some) autistic adults as well. And there other organizations, such as the Shield Institute, that provide similar services both for autistic children and for children with other developmental disabilities.

So why was NYFAC, and not any of the other organizations, singled out by name in the bill?

I would hazard a guess that none of the other organizations have even heard about the bill yet. Indeed, a quick Google search would seem to indicate that there has been no public discussion about the bill so far.

Back to the bill’s list of who the other council members must be:

g. two members appointed by the temporary president of the senate, one of whom shall be the parent of a child with autism;
h. two members appointed by the speaker of the assembly, one of whom shall be the parent of a child with autism;

§ 461. 1.

So at least two of the members are requited to be parents of autistic children. But NONE of the members are required to be people on the autism spectrum themselves. That’s a big issue from a disability rights point of view: “Nothing about us, without us.”

If you live in New York State and are concerned about the rights of autistic people, please contact your state senator’s office, refer to bill S04750, and voice the need for autistic people to be included on any “Autism Council.” You may also wish to express some of the other concerns I discuss in this post.

Back to the bill:

and
i. six members appointed by the governor: (i) one of whom shall be a representative from an institution of higher learning where autism education curriculum is currently being offered; (ii) one of whom shall be a representative of the northern part of the state; (iii) one of whom shall be a representative of the southern part of the state; (iv) one of whom shall be a representative of the eastern part of the state; (v) one of whom shall be a representative of the western part of the state; and (vi) one of whom shall be a member of the medical field specializing in research within the field of autism.

§ 461. 1.

Items (ii) through (iv) seem to me like a very strange way of dividing up New York State. At least half the population of the entire state lives in the New York City metropolitan area, which is in a small part of the southeast corner. Is that the “southern part” or the “eastern part”?

After the list of requirements as to who the council members must be, there is bunch of administrivia about how they are appointed, how long they serve, and when and how the council meets.

And then the aims of the council:

The council shall:
a. approve autism awareness programs;
b. carry out a program to provide information and education on program and services enhancements to families in the state with members suffering from autism;

§ 461. 7.

Whoever wrote this apparently never heard of the social model of disability. Many of us “suffer” more from the lack of enough autistic-friendly spaces than from autism per se. But guess what? The bill contains no mention of accommodations for autistic people.

“Autism awareness project” is defined later in the bill as “a project approved by the New York state autism council aimed toward educating the general public about symptoms and treatments of autism..”

Anyhow, other duties of the council include:

c. establish the mechanisms to use the results of biomedical research on autism and autism spectrum disorders;
d. establish a mechanism for the sharing of information among researchers and clinicians in the state conducting biomedical research on autism and autism spectrum disorders;

§ 461. 7.

The only kind of “research” mentioned in the bill is biomedical. Nothing about research into better ways to educate autistic kids, for example, nor research into non-biomedical ways to improve the lives of autistic adults.

Also, the mentioned biomedical research seems to be focused solely on ASD per se. Nothing about research on better treatments for common co-occurring conditions such as sleep disturbances, epilepsy, motor issues, ADHD, depression, and anxiety. Better treatments for sleep disturbances, for example, would do a lot to improve the lives of a lot of autistic people.

Especially needed, in my opinion, is biomedical research on co-occurring cerebral palsy, motor dyspraxia, and other motor issues. Many (though probably not all) of the most severely disabled autistic people are unable to talk, and in some cases unable to write/type either, or even point to pictures, due NOT to their autism per se but to an inability to control the relevant muscles. (The autism research establishment is belatedly starting to recognize that many nonverbal autistic people are more intelligent than was previously thought and have difficulty communicating due to motor issues.) Thus, for many autistic people, including many of the most severely disabled autistic people, various co-occurring conditions can be a much worse source of “suffering” (yet probably much easier and less expensive to discover safe and effective biomedical treatments for) than their autism per se.

Also helpful would be research into more and better treatments for ADHD, which overlaps heavily with autism (and also affects many more people). Currently, the standard medications for ADHD are highly addictive stimulants. Yikes! For those autistic people with co-occurring ADHD, better ADHD medications would likely improve their social abilities to some extent too. (On the other hand, I also believe that medications for ADHD are probably over-used, and that kids with relatively mild forms of ADHD could be better served by improvements to the educational system than by medication. Surely there must be ways to harness the positive aspects of ADHD, as an alternative to medication for at least some — and if possible most — ADHD kids? Personally I think the entire educational system needs a radical overhaul, but that’s a subject for another post.)

In general, better treatments for co-occurring conditions are likely to reduce the severity of at least some of the “core symptoms of autism” too, although they wouldn’t be a “cure,” of course.

And the results of any research on common co-occurring conditions should be disseminated, by an “Autism Council,” to all who care for autistic children (and adults).

Whoever wrote the bill also seems unaware that the very idea of biomedical treatment for autism per se is controversial, especially if the aim is a total “cure.” Many autistic adults, including myself, do not want to be “cured” of autism per se, because autism involves so many parts of the brain, and so many different aspects of our personalities, that a total “cure” would likely be impossible without a host of undesirable side-effects, taking away abilities as well as disabilities, and turning us into completely different people.

Moreover, on a biomedical level, “autism” isn’t just one condition with a single simple treatable cause. As the autism research establishment has found, there are hundreds, maybe even thousands, of different kinds of autism, with different causes. So there will never be a single simple silver-bullet “cure” for autism per se, no matter how much money is thrown at biomedical autism research.

To be fair, the bill itself does NOT contain the word “cure.” Nevertheless it says:

As used in this section, the term “autism research project” means scientific research recommended by the New York state autism council and approved by the department of health into the causes and/or treatment of autism

Thus the focus is very much on causes and/or treatment of autism per se, rather than more generally on how best to improve the lives of autistic people. And, as quoted earlier, other parts of the bill seem to narrow the focus of “research” down to biomedical — although there’s also a brief mention of “pilot studies” of services that might be more than just biomedical, in the remaining part of the description of the council’s purposes:

e. provide for a mechanism that would permit the public to obtain information on the existing and planned programs and activities being conducted related to autism, including any pilot studies, and the council to receive comments from the public regarding these programs and activities; and
f. provide an annual report to the governor with the council’s recommendations and examining the creation of programs and services for individuals with autism.

§ 461. 7.

More about the autism research agenda

One kind of nonbiomedical research that is desperately needed is research on the longterm effects of, and various possible alternatives to, Applied Behavioral Analysis (ABA) as a therapy for autistic children.

Over the past twenty years or so, there have been many adult autistic writers who have said that they were traumatized by the ABA that they received as a child. The main complaint is that ABA typically focuses too much on suppressing autistic behaviors including harmless stims, and on instilling NT behaviors such as eye contact, even though many autistic people have reported that eye contact makes it difficult to focus on the verbal content of a conversation. Another common complaint about ABA is that it can give kids a fear of expressing enjoyment of anything, lest the object of their enjoyment be seized and held hostage as an occasional reward for good behavior.

As far as I can tell, these complaints have yet to be taken seriously at all, much less investigated, by the autism research establishment. Instead there has been a big push for earlier and earlier ABA-oriented “early interventions,” with hardly any concern at all, from anyone other than lots and lots of autistic bloggers plus a few parents, about possible longterm emotional ill-effects.

The common complaints about ABA-induced PTSD, due to ABA’s pressures to act NT, are consistent with the complaints of many other autistic people, especially women, who were not diagnosed as children, thus not subjected to ABA, but who were traumatized by the stress of their own efforts to mimic NT behavior in order to appear normal. These latter complaints have been taken much more seriously by the autism research establishment, e.g. in various articles in Spectrum News.

The lesson here should be that attempts to conform to narrow, superficial NT social norms are bad for autistic people, and that what we need instead is a large and well-organized autistic-friendly subculture, including lots and lots of autistic-friendly workplaces where work-capable autistic people can be more productive without worrying too much about what we look like. Hopefully a well-organized autistic-friendly subculture — with a community of autistic people, ourselves, at its heart — would also enable the more severely disabled autistic people, and their parents, to benefit from the insights of those “high-functioning” autistic adults who were severely disabled as children, and from the insights of those who still are severely disabled but can at least communicate in some language-based way.

There are other therapies for autistic children that take a more compassionate approach than ABA, but which apparently have not yet received enough scientific attention to be accepted by the government and/or insurance companies as a substitute for ABA. Research into these methods needs to be done, and the results of any such research should be disseminated by an “Autism Council” just as much as the results of biomedical research.

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