Monday, February 13, 2017

Stop neurodiversity write to Price and Gordon

Those of you who read my blog, remember that on the day Donald Trump was inaugurated as POTUS, I sent him an email which I posted on this blog, telling him about the neurodiversity movement and urging them not to allow them to serve on the IACC or in other branches of government.  I also wanted to write to Tom Price who was Trump's choice to be HHS secretary.  I delayed doing so because the senate had not yet confirmed his appointment.  Now that the senate has confirmed his appointment, I copied and pasted the long letter that I wrote to Mr. Trump urging him to fire John Elder Robison, Samantha Crane, and any other member of the neurodiversity movement who is involved in governmental autism policy.  I'd like to say to anyone who happens to read this blog post and is an American citizen that I hope you will do the same.  You can contact Dr. Price at  Please drop him a line and tell him about the neurodiversity movement and the Autistic self advocacy Network and ask him not to appoint these people.  Also, ask him about the possibility of not even appointing an IACC.  Though the CARES act which authorizes the existence of the IACC can only be amended or repealed by congress, I'm not sure the HHS secretary has any legal obligation to seat an IACC.  I also encourage anyone who feels as I do to write their senators and their congressperson and ask them to repeal or at least amend the CARES act so neurodiversity does not serve in our government.  I've already done this.

Another person whom I've written is Dr. Joshua Gordon, the director of the NIMH who is the person who recommends people to be on the IACC, but really has the last choice, because Kathleen Sebeleius and all the other HHS secretaries just rubber stamped Tom Insel's choices.

Dr. Gordon, has just been appointed as NIMH director this year.  As the case with Dr. Price, I hope these are two new brooms who can sweep clean.

You can contact Dr. Gordon at and ask him not to appoint any ND's to the IACC or allow them to review government research grants by John Elder Robison, Stephen Shore, or any other ND's.  Ask him not to seat an IACC if he has the power to do so, though I'm not sure what the law is. 

Most if not all of these ND's were appointed by Barak Obama, Kathleen Sebelius sp? and Thomas Insel.  The Obama administration and Insel have been a disaster for autistic people.  I realize the Trump administration most likely is just interested in trying to show vaccines cause autism and does not care about doing anything about the ND movement, but at least that we have some new kids on the block, those of us who feel as I do can at least try to do something about it.

Saturday, February 11, 2017

New MIT lab wants to cure autism

In the occasionally some news is good news department, Gadfly is happy to report that there's a new kid on the block, a new lab at MIT started with a private donation, that has expressed a desire to find a cure and prevention for autism.  Hock Tan and Lisa Yang, parents of two autistic children and MIT alumni, have donated 20 million dollars for this laboratory.  In another article they state they want to erase the devastating effects of autism and want a world free of the burdens of autism.  I had wondered if it were possible to use CRISPR genetic editing techniques to prevent or at least do something to help  autism.  Interestingly enough, CRISPR is something that they are interested in using.

Interestingly, Bob DeSimone who runs MIT's brain research lab stated that NIH would not have supported their research in a million years and that the techniques they plan to use are too far out.

Now that Autism Speaks has announced they no longer seek to cure and prevent autism and very mildly autistic board member Stephen Shore has chortled over this with glee on facebook, I'm glad someone else is willing to pick up the mantle and actually try to do something.

However, from the neurodiversity movement's point of view, dem's fighting words.  Cure, prevention, burden are sure to provoke the ire and rancor of these angry and vicious hatemongers.

Tan and Yang's wealth will obliterate the need for the advertising that autism speaks engaged in during their pre sell-out days that angered so many people and led to the cry of "eugenics".  Other than AS, the government, and the Simons Foundation, I've never heard of anyone giving this kind of money for autism research.

There has already been some ND activity over this.  Michelle Dawson has tweeted about this.  More pronounced were the words of Michael J. Carley who stated in the comments section of the first article I linked to:  Cure"? Are you serious? It's 2017! Shame on MIT, an otherwise smart and ethical institution.  The irascible Forbes contributor Emily Willingham has tweeted that numerous autistics have graduated from MIT and asks "you want to prevent them"  An individual on twitter named Michael H who states he's a behavioral neuroscientist and a special educator has called the lab "ableist"  So one is a bigot if they want to cure autism (I may be updating this blog post if I see more angry responses from ND's)

Interesting that the "shame on MIT" comment comes from someone who can get an advanced degree from Columbia, make a decent living, get married twice and have two children he can support (something which most autistics, myself included, will never be able to accomplish).  Not to mention the fact he was diagnosed with Asperger's who did not want to call himself autistic because he didn't want to be lumped in with people who bang their heads and wear adult diapers.  Also, an individual who used someone's death from terminal cancer to aggrandize himself. 

I don't know if this lab's work will ever benefit anyone with autism, particularly in my lifetime, but I wanted to write this post, because I'm so glad that someone has the audacity to express how horrible autism is and uses that nasty four letter word that Carley and others are so offended by.  I can only hope they won't sell out to neurodiversity the way the government and autism speaks have.