Wednesday, June 2, 2010

emails to elected officials

I have written the following to my congressman, senators and president Obama. I realize this is probably about as effective as writing a letter to Santa Claus but I have done it anyhow. I am going to share the contents with the readers of autism's gadfly:

Mr. Congressman: I am an individual on the autism spectrum now in my mid 50s who longs for a cure for autism. I realize that this is not realistic in my lifetime. I am celibate. I have not worked in over 3 years and I have been unsuccessfully trying to get on disability for nearly 3 years now. I constantly talk loudly and make funny movements which draws attention to myself. I have very poor fine motor coordination and can hardly handwrite. I have various phobias. As a very young child I was almost completely nonverbal. I have been constantly fired from jobs (probably about 20 now) and had to give up working. i am very frustrated by this disability.
The reason I write to you is that I am very concerned about various autism policies that are now put in place by the federal government.
I am concerned about the creation of the combating autism act and the subsequent creation of the interagency autism coordinating committee. Though the law has stipulated that there must be at least one autistic member, there are currently two members, Stephen Shore and Ari Ne'eman. Both of these individuals have expressed opposition to curing autism in spite of the spirit of the law. Both of these persons are barely affected by their autism if at all. In fact Ari Ne'eman has stated that curing autism would be morally reprehensible. He has advocated a moratorium on all genetic research. Genetics may be in fact the 'ace in the hole' for finding future treatments or at least ensuring that future generations of children wll not be affected as I have. I do not believe either of these individuals should serve in the government in any capacity on autism related matters. I urge you to introduce legislation expelling these individuals from the IACC or introducing legislation to abolish the IACC and/or voting against reauthorization of the combating autism act when that comes up.
John Elder Robison, is another individual who has expressed opposition for curing certain autism disorders other than his own, yet he can be a best selling author, get a $100,000/year engineering job and get married twice. These are things beyond my capacity. He is allowed to review federally funded autism research apparently only because of his incredible celebrity. I do not believe persons who express opposition to a cure such as Robison should be reviewing grants for federally funded research. The same goes for Stephen Shore who does this as well as being a public member of the IACC. I hope these celebrity review of research by those opposed to a cure should stop.
I also would like to comment on the federal goverment's funding of autism researcher Morton Anne Gernsbacher. This is a woman who has publically opposed a cure and who in fact has stated that autism is a harmless condition. I was hoping you could introduce legislation to terminate her funding from the army, air force, NIH and lastly the CDC. It is interesting that she receives funding from the CDC yet does not believe that autism is a disease.
Thanks for your consideration in this matter.
Jon Mitchell


John Robison said...

Good evening Jonathan,

We just seem to go round and round with this “cure” talk . . .

As I’ve said before, I am absolutely in favor of conducting research to find ways to remediate the disabling aspects of autism. I understand that we are each disabled in different ways. Therefore, a variety of treatments or therapies are needed to address the autistic population. Some people hope for an intervention to help them speak normally. Others want help with social skills, to get a job or a friend. Others are plagued by intestinal distress. The range of possible autism-related disability is quite broad.

Some of us on the spectrum just want acceptance. Some (like you) state their desire to be cured. Others want acceptance and help. A few just want to be left alone.

I respect all those points of view. At different times, I have felt each of those ways myself. I’ve changed, so I know others can too.

I agree with those who say society needs to do more for autistic people in terms of finding jobs we can do, accommodating our different needs in the workplace, and providing support in our communities.

I agree with those who say our health insurance system needs to do more for autistic people and their families. I feel the same way about our educational system.

And finally, we come to the science. I absolutely support research that offers a good chance of producing a benefit to autistic people living today. To that goal, I have advocated for public health studies, development of therapies and psychology studies, tests of new drugs, and experiments with totally new therapies like TMS.

I’m open to anything with promise for today’s population.

Yet you still see me as anti-cure.

Here’s the thing . . . autism is an extremely complex neurological difference. It appears very early in life, and our entire development is shaped in part by our autistic differences.

When an autistic person reaches middle age, there is simply no way to strip away the autism while leaving the rest of the person. Too much of your development – who you are - is built on autistic differences. That’s not anti-cure; it’s reality.

I don’t know if we will even be able to “strip away autism” in a small child without very destructive effects. It’s not an idea I’d countenance without some very careful thought. What exactly would you take away; what would you change? How would you “remove autism?” No one knows, and we are nowhere even close to an answer.

At the same time, I absolutely support development of tools – be they medicine, therapy, or whatever – that could help you live a better life at any age. We can’t take the autism away, but we can probably significantly reduce its negative impact on many people in the coming decade.

To me, that’s a realistic and good goal.

Perhaps a day will come when we could make countless subtle shifts in a developing brain to change its course from an autistic to a non-autistic development path. For now, though, that’s science fiction and the work we do to improve speech and remediate other disability is real and promising.

You can get hung up in semantic arguments about a cure, Jonathan, or you can go out and do something about it. You feel I’m a bad person to serve on these various boards . . . well, offer yourself and spread your views far and wide. I’ve encouraged you to do that before.

You’ll get a lot farther if you spend your energy building something up, rather that tearing other things down.

Best wishes

jonathan said...

I just know what you wrote on page 5 of your book, "Look me in the eye". I realize you may have moderated your stance a bit and perhaps I should have taken that into account, but I am still not certain if you still feel that there is no need for a cure for others with Asperger's as you clearly stated in the past. However, I am glad you support ways to use science to ameliorate the disabling aspects of autism.

However, as you know, our government has passed the combating autism act a few years back. It is quite clear that prevention and curation of autism are a matter of legislated public policy regardless of how some persons with autism feel including yourself. As someone who is serving as a reviewer of public sector research I believe this policy should be respected or you can try to change the law or work for private sector fundraising organizations that have policies similar to whatever yours is. Of course, you now serve in some capacity on autism speaks, which on their public face has the same cure and prevention policy as the federal goverment in spite of the fact they finance neurodiversity ideologue laurent mottron and allow morton gernsbacher who is like minded to serve in an advisory capacity.

Stephen Shore has made it clear he opposes research to find a cure and prevent autism in spite of the fact he serves on a governmental body designed for that purpose.

Worst of all Ari Ne'eman does not even agree with you. He is for banning all genetic research and as far as disabling aspects of autism are concerned he clearly does not believe autism is a disability as I have meticulously documented on this blog.

A unknown nonetity such as myself has no chance of being appointed to these things so there is no point in trying to put myself forward for one of those positions.

SM69 said...

Good balanced reply from JER here.

Yes Autism is an early developmental disorder however, regression in autism have been known to occur even at much later developmental stages, age 6,8, 14, 30 and 31. Some of these have been published if you look for Gillberg for example. In the cases he described in the literature, normal individuals developed autistic features following herpes encephalitis. And this was reversible as herpes infection can be treated. There was nothing in these individuals that could have predicted these deteriorations.

There are many known cases who present and are diagnosed as autistic, yet clearly they have conditions with a different aetiologies: several known genetic conditions are more likely to present with autism (FRA-X, NF-1 etc), in utero viral and bacterial infections, paraformaldehyde pre-natal exposure, sodium valproate (anti-epileptic taken by mother whilst pregnant), foetal alcohol syndrome, drug usage during pregnancy, etc and peri-natal insult (birth trauma) and post natal (obviously a key developmental stage is the period of 9 months to 24months), but as said above late onset regression are known and not that uncommon.

This demonstrates over and over that the diagnosis criteria for autism at the moment are not sufficiently accurate. So let’s be humble and not believe that we know what we are dealing with when someone has autism. We just don’t, until that person is being suitable looked at.

Obviously whether someone can recover or not depends on the causality of his/her condition- it is could be as simple as treating the viral infection soon after onset for example, it also depends on the timing at which development was altered.

The brain is a lot more plastic than ever anticipated. You can repair nerves, you can restore blood flow, you and reactivate inactive brain area with exercise, pharmacologically, nutritionally and also with HBOT. I am not yet very familiar with TMS, but I expect like neurofeedback, or even good teaching, sport etc, this will improve brain function. This brain plasticity has been documented over and over, in brain ischemia, spinal cord injury, traumatic brain injury. You can also replace defective cells. For example, recently Capecchi described the Hoxb8 KO mice, that have 15% less brain microglia cells, and present with OCD (4hr of grooming a day instead of 2 cause skin ulceration), the behaviour is totally corrected with bone marrow transplant with wild-type cells (precursor of microglia).

As far as what is today being diagnosed as autism, I have seen in my own eyes about 10 children in 400 who have changed with intervention so radically, that they cannot easily be picked up from peers and indeed some no longer have a diagnosis of autism. These kids have not been stripped away from their personality in destructive ways. They have been given back their fullest potentials.

Bottom line is that autism can be many unrelated conditions, some of which are treatable. Until someone is given access to suitable evaluation and suitable intervention, we have no idea what really is at stake for that person. To oppose these understanding and development is unethical, and essentially comes from the mind of someone who is uninformed and simply unable to conceive what he does not already know. I am glad to here that JER can change and learn, this is not the case of everyone unfortunately. And when those with fixed mind are given some power of decision or control, often we are stacked with poor decision until this person goes. To take a famous quote, “medicine evolve one death at a time, I don’t mean the death of the patient, I mean the death of the doctor”.

Jonathan, I know you have asked me to write shorter posts, I'll do better next time!

John Best said...

John Robison,
When you state that you're in favor of conducting research..., you're lying. No research is needed since we already know how to cure autism.

You aren't "on the spectrum". You allegedly have Asperger's. You have no business saying anything about autism.

There is nothing complex about autism or Asperger's. Both are mercury poisoning. Then we have some screwballs who aren't quite "normal" and decided to jump on the diagnosis for fame and fortune. You dirtbags persist with the frivolous claim that we can't undo the damage. You're wrong. People who actually have mercury poisoning mislabelled as some sort of autism see their lives change for the better once the suffering they endure from the mercury in their brains is gone.

Your brand of sophistry is fine in college philosophy courses but it has no place in the real world. You're just a liar.

walking said...

I avoid reading the blogs of ND folks who look down on parents like me who have never given up and tried to find a mindful balanced between living a life well-lived and seeking treatments that improve our daughter's quality of life. People who can speak and were close enough to typical to avoid labels until they were adults do not have a right to speak for my daughter who was so severe that we started taking her to specialists when she was only two. Her expressive language has only come online in the past three years, and she still has a ways to go in being able to carry on a conversation.

I especially despised being derided for being like Jenny McCarthy because I was trying out diet, sensory treatments, etc. while she was still on MTV. By careful observation and persistence, we sorted through what helped and did not help in a very logical way.

They talk about acceptance, but, on the rare occasion, I try to make a point about having to cancel math for three days because gluten wiped out my daughter's temporarily abstract thinking skills and they are skeptical! We saw clear patterns many times and they don't believe it because it goes against their worldview.

My daughter is 21yo and doing really well on RDI. It is not a cure for autism for a person her age. However, she has a better understanding of people and how to get along in the world now. We still have a long ways to go but I have hope that we will continue to see slow but steady progress. We are not stripping away her autism: she still has many of her endearing quirks and personality traits. But, we are filling in developmental milestones that NT infants and toddlers learned. It is exciting to see her defy what I was told years ago was impossible for her to do.

I hope you find the help you are seeking! The brain is more plastic than people think. If it weren't, we wouldn't be trying to rehabilitate elderly stroke patients.

Jake Crosby said...

I met Stephen Shore at Autism One and grilled him on a number of the points you laid out, Jonathan, and I don't see much of a problem.

From what he told me, he has reservations of the word "cure" only because he believes that with autism cases - even if an afflicted person is "recovered" and loses an ASD diagnosis - that some residual characteristics will remain. As far as treating autism spectrum disorders as defined in the diagnostic manual is concerned, he did not seem to have a problem with that.

Ender said...

Foreskin, I know you have leaped off the deep end head first... but please shut up :).

moondustwriter said...

Hmm - even though I do not suffer from autism I feel your pain. I am an advocate for autism - I agree with you that a cure and ways to minimize the effects of autism should be our objective. Gosh we can fly to the Moon. I would love to be able to interview you. I don't know if my voice for you will help.