Thursday, September 28, 2017

If a new HHS secretary is appointed, will they do something about neurodiversity

Those who have been following the news know there's been some controversy about certain government officials in the Trump administration who have abused their power by using government aircraft at taxpayer expense when they could have purchased much cheaper flights on commercial airlines.  HHS secretary Tom Price is apparently one of the worst if not the worst offender in this regard, piling up a government tab of around 400 grand.  After a barrage of media publicity, secretary price claimed he would not be using the private jets anymore.

According to an article in the Los Angeles Times, president Trump himself expressed displeasure at the antics of his HHS secretary and has not ruled out firing him.

After Price's appointment by Trump and his confirmation by the Senate, I emailed Mr. Price urging him not to allow members of the neurodiversity movement such as John Robison, Samantha Crane, and Noah Britton to serve on the IACC.  I also urged him not to seat an IACC if the executive branch of the federal government could legally do so.  Though congress passed the CARES act which includes having to have an IACC, I'm not sure if that means the president and secretary of health and human services are legally obligated to appoint members.

Not surprisingly, Mr. Price did not respond to my email and, if what I've been reading about him in the news is true, he's apparently less than an ethical person.

If Trump fires Price and appoints a new HHS secretary, then I guess I'm going to have to start all over again and write him/her, urging them to do something about the ND's.  Not just the fact that some of them serve on the IACC, but also those in any position of power such as Scott Robertson's appointment to some other thing outside the IACC and John Robison's and Steve Shore's appointment to review grant applications.

As I've said before on multiple occasions, several anti-cure, anti-treatment individuals have been appointed to the IACC and other government affiliated programs.  Not a single pro-treatment, pro-cure autistic has been appointed to any of these.  This is despite the fact that Roger Kulp and possibly some other individuals on the spectrum who are in favor of cure/treatment might actually have some constructive ideas about autism-related matters.  Roger tried to get on the IACC but was turned down. 

Though John Robison has claimed he's pro-treatment and is in favor of remediating the disabling aspects of autism, he still says he's opposed to a cure, which, in my opinion, is like saying people should learn how to swim, but they shouldn't get wet.

It will be interesting to see if Trump appoints a new HHS secretary and if he does, that individual will be hearing from Autism's Gadfly (me).  So far, secretary Price, NIMH head Joshua Gordon, and President Trump himself have not taken a position against neurodiversity and have not done anything about these people and their influence in government-related autism matters.  If Price gets canned and Trump appoints someone else, I hope they'll do something about neurodiversity. 

3 comments:

Roger Kulp said...

I am not completely familiar with all that is involved in applying to the IACC,as I did not handle much of it personally.I applied the last time there was a vacancy,and when I did apply,John Elder Robison was instrumental in my application process,both in composing my formal application,and as my advocate to NIMH and IACC.For that I am very grateful.

I am not completely clear as to why I was turned down,but I am pretty sure my lack of formal work experience was a big factor.If,indeed,work history is a factor for somebody on the spectrum to get on the IACC,then,by nature,it is meant to exclude all but the very highest functioning.The application for the IACC is more like a job resume.

I am not sure if the fact I had spent seven years (2009-2016),as my own self advocate piling up metabolic,autoimmune,and genetic diagnoses impressed anyone.These include cerebral folate deficiency,and a unique,one of a kind,chromosomal disorder,among others.Nor did they seem to be impressed by the fact,I was able to find a cause for,and treat,my autism,as an adult.Autism that was severe enough for me to be in a group home under round the clock supervision.Or by the fact I have spent the last ten years studying the medical literature around autism.

I won't exactly say I am bitter,but I have a far more realistic picture about what it takes to work for either the IACC,or any of the big autism organizations.I just don't see it happening.I've given up,and moved on.

I am not sure Trump knows what neurodiversity is,or that Trump knows anything about autism beyond vaccines.Trump would probably just rubber stamp an appointee someone else places before him.

jonathan said...

Ari Ne'eman was appointed to the IACC in 2010. I'm pretty sure, particularly from the communications I had with him that he had no paid work history until 2011 when ASAN became a 501(c) approved by the IRS and he used a good portion of ASAN's revenue to pay his own salary. So, I find it hard to believe your lack of work experience was a factor. The IACC seems to be interested in appointing celebrity autistics who are well known or have connections, though I'm not sure how Noah Britton got his appointment.

It is probably just as well you moved on as I doubt you'd have any influence on autism policy even if you'd gotten the appointment.

You are probably right about Trump and the ND movement and I guess it is just a dream I have that his administration would do anything about them, since Obama, his predecessor was instrumental in giving them the influence they've had in autism public policy.

Seeing Clearly Media said...

Hello, I am afflicted and I am pro-cure and I would gladly take any position of power in regards to ASD. I have a website www.seeingclearlymedia.weebly.com, While I don’t dedicate this website solely on the autism issue I do but a fair amount attention on this issue. I have lots of things to share in regards to the DSM and ASD.You can email me on my school email jose.sanchez@cusdstudent.org. I have thousands of screenshots of conversations I had with the anti-care community and sometimes I’ve even received death threats and sometimes I had people tell me that they are just flat out offended and that they don’t want me speaking anymore. Thank you for this article anyway and why I am not a fan of Trump Not for the reasons are probably thinking of but for many reasons anyway, at least with Trump I don’t have to have the nightmare of a vaccine apocalypse.