Left Brain Right Brain

Here is a link to an email form that will help you to respond to the Interagency Autism Coordinating Committee. It is the “long form.”

Go ahead.

Really.

Check it out.

Now would be good.

There’s a link at the top of that page to a “short form” if the long one feels too daunting (I don’t think it is.)

Here’s a reminder of what the IACC wants to hear:

Information Requested

The IACC welcomes your comments on the draft Strategic Plan for ASD Research. The draft plan can be accessed at the following website:http://www.nimh.nih.gov/research-funding/scientific-meetings/recurring-meetings/iacc/strategic-plan/2008/iacc-strategic-plan-august-2008.pdf

Please organize your comments by the sections of the draft Strategic Plan:

…

How to Submit a Response

Responses will be accepted until September 30, 2008 via email to iacc@mail.nih.gov. Please limit your response to two pages (approximately 1,000 words) and mark it with the RFI identifier NOT-MH-08-021 in the subject line. You will receive an email confirmation acknowledging receipt of your response, but will not receive individualized feedback on any suggestions. The collected information will be reviewed by the IACC, may appear in reports, and shared publicly on the IACC website: http://www.nimh.nih.gov/research-funding/scientific-meetings/recurring-meetings/iacc/index.shtml.

Where it says, “Please organize your comments by the sections of the draft Strategic Plan…. Well the form (made by Sullivan) is laid out for you in the proper order and gives you the framework for waht you might want to say first, second, third, and so on.

Have you sent your thoughts to the IACC? Why not? Click here for that form I mentioned earlier. They want to know what Y.O.U. think. Seriously. They want to know what you think. If you only have one thought about autism research (too much money has been spent beating a horse that was dead to begin with… the vaccine/autism connection, then say something about that, if you love PECS and want more research about PECS then tell them that, if you want research into whether a certain PR man to the mercury-militia has a conscience … well, that’s not on topic, but you could say that you want more research into how to provide communication devices for autistic people who need them, or more research into the stress-induced diseases of autistic people like irritable bowel syndrome, or more research about the way the peculiarities of autistic people’s vision or hearing, how about research into the use of melatonin for sleep, or research into how to get kids off of certain prescription drugs by reducing stress, or how about how best to take care of the teeth of autistic children…) then share it! Don’t keep it to yourself. Share it! Now would be good. Time is a wasting! Let your voice be heard. They’ve heard more than enough from the likes of Lyndell Redwood and Jim Moody, let them hear what YOU want them to hear. If you have an aunt or grandparent who has some big ideas about what they should be researching for autistic people, then you can forward the URL for the automated form to them http://rolihlahla.com/iacc_longform.html . If you are an autistic adult you could tell them that you would prefer that autism not be eradicated in Suzanne Wright’s lifetime, or tell them you want help in figuring out how to get and keep a job. But they need to answer right now because time is flying.

http://www.7is7.com/otto/countdown.html?year=2008&month=9&date=30&hrs=23&ts=24&min=59&sec=59&tz=-240&lang=en&show=dhms&mode=r&cdir=down&bgcolor=%23CCFFFF&fgcolor=%23000000&title=Countdown%20To%20Deadline%20to%20Respond%20to%20the%20IACC

Introduction – This is a Guest Blogged piece, written by a father in what is a far from unique situation and yet a situation we hardly ever discuss. Its humbling, touching, sad and affecting. Its also a microcosm of how fractured the autism community has become and how some are prepared to accept dangerous treatments where others are simply not. I hope you can give the author some feedback after you read this piece. Kev.

Broken Families, Not Broken Children

By a Proud Father

I’m sitting here, having just put my son to bed, and dreading having to take him over to his mother’s in the morning. This is my long weekend with him – Friday evening until Tuesday morning – and they go by so quickly. I’ll see him in a couple of days for 24 hours before he’s gone again for another 4 or 5 days. It’s a convoluted mess, but the best I can do right now. He’s handling it very well and we have way too much fun when we’re together. I don’t know about the other days, and I try hard not to think about them too much. I hope he’s as happy as he seems to be here.

You always hear about the high divorce rate among parents of autistic children. I guess my assumption was always that one of the parents was never able to deal with the realities of raising an autistic child and bailed out of the marriage with a comment like, “I just can’t handle this. I’m sorry.” (Sound of front door closing.) But now I wonder whether it’s often a different situation entirely – two parents who love their autistic child but are at completely opposite ends as to how to “treat” them. I say that because that is exactly what has happened to my marriage and my family.

I will be the very first to admit that our marriage had never been perfect, that it had more than its share of rocky times. But there were never any “external” factors as such, and our lives were devoted to our son, who will be 5 at the end of this year. I won’t go into all of the details of the first few years of his life; I’m sure everyone has heard of – or lived – them all: missed milestones, speech delays, socialization problems, repetitive behaviors, and so on. But we accepted it – I thought – and started the usual speech, occupational, and physical therapies, and he began attending a preschool PPCD class at the elementary school down the street where he will eventually go to Kindergarten and grade school.

About a year and a half ago, my wife mentioned she had heard of a place in Austin that could help our son. At that time, we had not heard of Wakefield et al, and were only marginally aware of the vaccine-thimerosal-autism “issues”. Our first appointment went fine it seemed, and we got a list of supplements as well as dietary guidelines to follow. I remember leaving there and heading home to Houston on a mild, pleasant winter afternoon, thinking, “Wow, now we can really get him some help and everything will be fine.”

But it went downhill from there. As I started to do more and more reading and more and more research on what they wanted to do to our son, I became increasingly concerned about the lack of proven effectiveness – and more importantly – the safety of the treatments. I tried to show my wife that this was all starting to get more than a little scary, but she blew it off, saying that these people were the only ones that really cared about helping our son.

I had allowed our son to undergo several weeks of B-12 shots, the only effect being that it made him jumpy and restless at night (he has always been a good sleeper and consistently gets 10 hours a night). I had allowed him to get several weeks of DMSA suppositories to absolutely no effect. I had allowed gallon after pound of blood, urine, and stool samples to be taken from him and sent off to the mail-order labs we all know about, the ones who send back pretty, colorful lab reports designed to show parents how much they know and how much they care about their kids. I showed her the lab reports that we did manage to get from the reputable labs that completely contradicted the other ones. She refused to allow him to get his 2nd MMR shot (although his pediatrician – an excellent, common-sense doctor – allowed us to wait a bit on that one, she did insist that when he turns 5, he will get the shot.) The DAN! protocol, the Yasko protocol, homeopathy, naturopathy, functional medicine, and so on, and so on.

I kept telling my wife that this had to stop. In the meantime, I heard things like, “You don’t want him to get any better so he can remain dependent on you the rest of your life”, and “If you don’t want to help your son, get out of my way”, and “Didn’t you hear the (DAN) doctor when he said ‘It’s clear the metals are there’?”, and “Do you want him to stay like this forever?” (that last one – and other similar comments – said in front of our son). No, there is no such thing as an autistic meltdown, they’re all temper tantrums and should be treated as such. Stop every single stem, it’s bad for him. No, he’s a child with autism, not an autistic child (as if it were a disease that needed to be eradicated).
And then, of course, along came Jenny McCarthy to validate everything.

I somehow managed to keep the scary stuff away from him for a while (I’ve found out that at least some of these doctors are hesitant to insist on treatments if one parent is adamantly opposed to it). But then one day a new package came in the mail: DMSA suppositories, B12 shots, Valtrex, and glutathione cream. She had gone behind my back and gotten the DAN doctor to prescribe these things. I knew then the marriage was over. No matter what, I was not going to allow our son to be subjected to this insanity all over again.

So that’s where we are now: in the middle of a divorce; fighting to do what each of us thinks is best for our son; fighting over who has the right to determine his treatments and therapies. So far, I have managed to do what I set out to do: stop our son from being hurt any further. Alternative medicine treatments have been stopped – no chelation, no injections. When he is with me, there is no GFCF diet (he has always tested negative for celiac disease and reputable allergy tests show he’s not allergic to anything). He can have dairy milk, whole wheat, and all of the fruits, vegetables, and nuts that he supposedly was deathly allergic to. And he has never shown any external or internal adverse effects from any of that. I do not give him the dozen or so supplements that were a part of his life for too long – although I’m sure he gets them on other days.

I know that there are those who treat autistic children who are fully aware of the utter ineffectiveness of their treatments as well as the very serious risks associated with them. I honestly believe there is a special place in hell for them.

I also know that there are those who honestly believe that their treatments are effective and that they are doing autistic children a great service. I sometimes pity them – as I pity my wife – that they can’t admit that they are wrong in the face of overwhelming scientific evidence. But then I think about how this lack of objectiveness and concern affects the health and safety of innocent children, and my pity disappears – completely – and is replaced with anger.

They say that what matters most when raising an autistic child – above all else – is love and acceptance. While I know that both of his parents love him dearly, one of them does not have the acceptance. And that is sad – sad for our son, sad for his parents, and sad for the family.

I have lost my wife as well as family members over this; in-laws that were like members of my own family. But it is really all about our son. He is a genuinely happy, smart, and gentle child who is the most incredible gift I can possibly imagine. And I will not allow anyone to tell me – or him – that he is broken, that he needs to be fixed, that he needs to be released from his prison, or that he is soulless.

One of the most beautiful statements I’ve read in the last couple of years comes from a wonderful essay that Kerry Cohen wrote called What’s Wrong With This Picture ?. She ends it with:

But if I am only able to do one thing for him as I usher him through childhood, it will be this: I will protect him from anyone who might make him feel that he is somehow not perfect.

This is a PSA from the National Down Syndrome Society.

Big Autism is a term coined by the blogger Prometheus.  I believe he had in mind “Autism Speaks” (which consumed Cure Autism Now, and National Alliance for Autism Research) and “Autism Society of America” (which is affliated on some level with “Defeat Autism Now!”/DAN! and the badly named “National Autism Association”of Nixa, Missouri).  Big Autism, unlike the National Down Syndrome Society, still needs to get a clue.  Big Autism has done a  horrendous job of representing autism to the public.  It’s shocking how bad they are at advocating for autistic people.  It can’t be a good sign when an organization picks a number to represent how many people they are supposed to be helping because it sounds good or looks good.  This is apparently what Autism Speaks has done in their choice of “1.5 million” which is supposed to be how many people in the US have autism.  Autism Speaks , when asked, refuses to say how they arrived at the magic “1.5 million,” probably because if they bother to explain it, the explanation would undo their autism epidemic story.  It doesn’t matter if it’s accurate, what matters is if it brings in the donations.

But back to how PSAs should be done. One of my favorite PSA videos ever is from the National Down Syndrome Society and is called “Dreams”. Click here to see it. If you’re like me you will become verklempt, so get a hanky first.

I love this one, too. It’s from Brazil.

Here’s another I just found.  It’s from the UK.

The (US based) National Down Syndrome Society has three more, new, advocacy videos, here featuring three celebrities, including Chris Burke, a Down syndrome adult and actor.  In my opinion, the NDSS knows how to do advocacy for DS people.

Why is it that autism can’t get some decent celebrity spokespeople? (OK, so we sort of have Sigourney Weaver). And Amanda Peet is great, of course, but she’s a spokesperson for vaccines, not especially for autism.  It’s like the US autistic community got stuck with the worst of the dregs for celebrities. I know, I know … “LEAVE BRITNEY ALONE!” If she and Jenny McIndigo will leave autism alone, I think we’ll all be relieved.

In the US, to my knowlege, the big autism orgs have never gotten it.  Their “outreach efforts” usually reach out and devalue autistic people; their “Public Service Announcements” are in reality “Public Disservice Announcements”.  The UC Davis MIND Institute put out a really awful set of PSA’s when they first moved into their fancy building. And let’s not forget the ransom notes campaign.

This is part of a longer video called “Living with Fragile X”-

In case you don’t actually watch that one.  At the end a mom of an adult son says,

“I wanted him to be normal.  And if I have any regrets it’s that I did not let myself love him at that moment.  Just say, ‘I love you just the way you are.’ And I hope he forgives me…for ever thinking I wanted him to be different.”

That! That is what a Public Service Announcement should look like.  It even features a researcher from the UC Davis MIND Institute who mentions autism, if you can believe that. It doesn’t candy-coat the problems of Fragile X people, but neither does it over-dramatize the problems and go out of it’s way to stigmatize anyone.

Belgium seems to have figured out how to do autism PSA’s already.

Setting a nice example for the English speaking world, this is amazing video showing what the NAS, the National Autistic Society, has been doing for some time now, that is, actually respecting and helping autistic people.

Here are four more PSA’s, professionally made ones, these from the NAS.  I don’t think they are perfect but they are so much better than anything that’s being done by “Big Autism” in the US.  See the videos, here, here, here, and here.  This one is good, too, the NAS President and individual Members of Parliament discussing the way autistic adults have been ignored to a huge extent.

The following ones are new to me.  They are fairly informal NAS interviews with autistic adults, here, here and here and an interview with a boy. The UK has been invaded by Autism Speaks, but the British version seems to be slightly less bombastic, so far, maybe not, though. “Treehouse” is having a conference in London next month and Bob Wright of Autism Speaks will be there to speak. I understand that autistic adults will attending and representing autism realistically, one can only hope that Bob Wright will take notice.

It’s amazing what can be accomplished when people in authority are tuned into reality and the long term, instead of being tuned into damaging illusions and distortions and short term pay-offs.