Wednesday, October 29, 2014

Gadfly boos congressional letter and neurodiversity's and ASAN's dishonest talking points

With Halloween right around the corner, we see that neurodiversity and the autistic self advocacy network is still up to its dirty tricks without giving autistic people and their families any treats.
They've apparently lobbied five congress persons to write a letter on their behalf dishonestly claiming that autistic self advocates (a euphemism for neurodiversity proponents who oppose a cure for autism) are severely underrepresented in autism policy making recommendations in the federal government.  ASAN recently published the linked post on their website in which they applaud the letter these five congresspersons wrote on their behalf. 

The letter signed by these members of congress at ASAN's and neurodiversity's behest contains one absolutely false talking point:

The Inter-Agency Autism Coordinating Committee (IACC) housed at the National Institutes of Health (NIH), is the body tasked with developing the HHS Strategic Plan for Autism Research.  The IACC currently has only two individuals on the autism spectrum and no member from a self advocacy organization out of fourteen public and twenty-eight total members.  

The talking point that I've emphasized in the black highlight is blatantly false.  The IACC currently has not two , but three individuals alleging to be on the autism spectrum:  Scott Robertson (who helped start ASAN with Ne'eman, more about this later), John Elder Robison, and Noah Britton.  The no member from a self-advocacy organization statement is also false since Scott Robertson is a member of ASAN and one of the top people in the organization, aside from Ari Ne'eman, ASAN's president.  There have also been two other persons on the spectrum who have been on the IACC in the past, Ari Ne'eman and Stephen Shore, who have both opposed curing autism.

What is not a lie is that to date zero pro-cure, pro-treatment persons on the spectrum have been appointed to the public membership of the IACC.  Of course, the old standard argument is that there are very few if any autistics who look upon autism as a disorder that needs treatment or possible cure or that none are able and willing to serve.  This is also not true, as Roger Kulp, an individual with  cerebral folate deficiency on the autism spectrum who is anti-neurodiversity and pro-treatment (I'll let Roger speak for himself as to whether or not he is pro or anti cure) has expressed an interest in being a public member of the IACC (as well as filling the vacancy for an autistic in an advisory position at Autism Speaks after John Robison tendered his resignation) yet has been completely shunned by Thomas Insel, the secretary of health and human services, autism speaks  and other powers that be. 

ASAN is only interested in having pro-neurodiversity and anti-cure and anti-treatment autistics serve in positions of power.  So when they say all persons with autism this is also blatantly false.

Anyone who lives in the districts of the following five congress persons, I urge you to vote for their opponent in the upcoming election:

1. Jan Schakowsky.  2. Kathy Castor  3.  Tammy Duckworth   4.  Jackie Speier  5. Paul Tonko.

I can only wish these despicable members of the house of representatives could be voted out of office next week, but I realize that's an opium-induced dream, but here are their names for edification.  

I doubt the congress people came up with these false statements out of thin air.  They were supplied what were probably deliberate misstatements of fact by ASAN.  It is very sad that these people have to stoop to dishonesty to get their way and close out sane people who want to end the pain and suffering that this horrible disorder causes.  All I can say is booo hisss, razzz.  


8 comments:

Roger Kulp said...

I think you can use the word cure and treatment interchangeably.Obviously I would not have spent the last five years seeking a diagnosis and treatment if I were not pro cure.You might say a person is cured,even if they have to be on a regimen of diet and medication the rest of their life,like I do.Sort of like a diabetic is "cured",as long as they stay on their insulin,diet,and meds.

I started down this road not so much to cure or treat my autism,but because I had so many medical problems.I now know these are due to a combination of genetic defects in folate metabolism,and mitochondrial disease.Systemic folate deficiency leads to megaloblastic anemia,secondary immune deficiency,heart problems,seizures,and a lot more.I knew nothing about this,or all the research that had been going on at Arkansas Children's Hospital,where I would eventually be seen,and elsewhere,linking this type of metabolic disease to autism.That would all come later.One of the things I have is Severe MTHFR Deficiency and homocystinuria.This is considered one of the treatable forms of intellectual disability/autism.
http://www.tidebc.org/Ph/physicians.html
And was one first metabolic problems discovered in autism. http://www.jpands.org/vol9no4/boris.pdf

There is a lot that people in the neurodiversity movement get wrong.One of the big things they get wrong is trying to separate autism from the comorbid medical issues.When autism exists as part of a complex picture of either autoimmune or metabolic/mitochondrial disease,the autism is just simply another feature of this underlying autoimmune or metabolic disease,not a separate thing.I think this is one of the hardest ideas for those in the neurodiversity movement to accept,even though this is what the science has proven over and over again.

To his credit,John Elder Robison is one of the few in the neurodiversity who seems to get it,maybe because he has spent so much time on the IACC,learning about all this research that has been going on.He was a great help in my trying to get on the IACC,and I am grateful for the help and support Mr.Robison provided in my attempt.He told me in an email that I represent a voice that has never been heard before,and needed to be.But the powers that be at NIMH decided it was not to be.It was very hard to get any word from them,but what they told me I gathered the reason I was not considered was because I did not have a big enough resume.

Lucia Bevilacqua said...

I'm so glad that you blog against the neurodiversity absurdity. I always look forward to your new posts.

jonathan said...

Roger, I don't use the word cure and treatment interchangeably. To me a cure is going from a diseased state to a normal state of health. Insulin does not cure diabetes, but only provides symptomatic relief. A diabetic still has to inject themselves with this, still has to follow a strict diet, yet they can still get retinopathy and neuropathy and probably other problems as a side effect of diabetes.

In the same vein, you might have a medication or treatment that would partially modify autism but would not cure it.

jonathan said...

Lucia Thanks for your kind comments. I'm glad you like my blog.

jonathan said...

Well, Roger, I don't think there is any loss on you not getting on the IACC. It has nothing to do with a resume, but who can get the most nominations, and you are not well known enough or have enough people interested in your cause that would ensure enough nominations. I would have nominated you, but I don't believe in the IACC and I believe the CARES act is a colossal waste of tax dollars, so I don't want to nominate anyone. I don't think the public members have any real power and I don't think the federal government officials listen to them and just add what they want to the strategic plan, which is probably not different than anything they would do otherwise without passage of CARES (formerly the combating autism act), so you probably would not have gotten what you wanted out of it anyhow.

Roger Kulp said...

I just learned they either did not actually get my resume,it may have gone to the wrong person,or I did not do it right.Something is up here.

jonathan said...

Try contacting them again, Roger, but, as I said before, I don't think being on the IACC would do anything to help any of your causes.

Joe Mama said...

You and Kulp are natural shitwits. Always so jealous of anyone who has had any success.