On media, neurodiversity and science

29 May

Opinions vary as to why I, and many of my online friends believe what we do. The answers cannot be easily encapsulated but an indication is given by the source of the two links I’ve just linked to.

The first group believe autism is not just a disability, that it is both more and less than that and that whatever the aetiology of ‘it’ is, it is likely to not have a single cause and further, if it does or if it doesn’t, the fact that people are autistic is a state of being (a property of their personhood) that is deserving of respect and tolerance. After all, if we can tolerate difference between sexes enough to think of a toilet seat that raises or lowers as a natural aspect of functional life then we really should be able to make the minor adjustments necessary to accommodate the needs and requirements of autistic people.

The second group believe in the scientific method. They believe that in matters of science, that the rules of science should be applied.

There is some major overlap between the position of these two groups. There are a number of bloggers on the Autism Hub and an even larger number of readers of blogs on the Autism Hub who are bloggers on Science Blogs and/or readers of Science Blogs’. A number of bloggers who have autistic children are scientists of various disciplines.

It is worth noting however that these two groups are not synonymous. I know of a few people who believe in the basic essence of neurodiversity who also think vaccines damaged them or their children. This is because they know that even if vaccines did do damage, they or their kids are still deserving of respect. Conversely, I expect there are a few science bloggers who would not agree with the standpoint of neurodiversity and would ferociously chase a cure.

But these people are the exception. By and large these are two groups who share a mutual opinion that the only way to progress our knowledge of the science of autism is to use the scientific method. Science is now, thankfully, beginning to catch on to the idea that the best way to get knowledge that may help autistic people is to listen to autistic people.

At MIT Amanda Baggs has been working with the science team there in ways that will result in positive and scientifically valid ways of helping autistic (and other) people.

Estée also gave a presentation at MIT (the second talk was fuller than this one) and she also noted Michelle Dawson’s ongoing role at the University of Montreal.

This is all good progress. It’s exciting to watch these things develop and to see the possibilities that might spring forth from these alliances and how they might benefit my daughter and autistic people generally.

I believe in the scientific method. I believe science has done more than anything else to take us closer to understanding the universe within us and around us. I believe that the naturally occurring alliance that is being forged between autistic people, their allies and science is absolutely the correct way to go. Neither side is seeking to change or alter the other but to understand each other and benefit from the union.

If I want to see an example of how _not_ to do things, I need look no further than (you guessed it) the mercury militia/malicia. These are people who have taken the polar opposite view. They eye science with distrust. They refuse to accept that the results of studies that disagree with their stance can be correct to the extent that they threaten those scientists with violence, or they ignore science and instead disagree with the wording of press releases about science. In fact, this is Lenny Schafer’s view (from a past SAR):

Myself and other autism activists believe there is enough evidence to support a causative relationship between mercury and autism in a court of law, in front of a jury, where standards of evidence are different than that of the narrow focus of scientific findings. And if you can convince a jury, you can convince the public.

Make no mistake, by ‘different’ Schafer (correctly) means looser, way, way looser. He does not want scientific standards to come to play in determining the vaccine/autism connection. The reason why is absurdly obvious.

The scientist and author Michael Crichton once gave a speech about environmental issues that may as well have applied to the autism/vaccine issue:

…Proponents are pressing their views with more PR than scientific data. Indeed, we have allowed the whole issue to be politicized—red vs blue, Republican vs Democrat. This is in my view absurd. Data aren’t political. Data are data. Politics leads you in the direction of a belief. Data, if you follow them, lead you to truth.

On the EoH group where Lenny Schafer is kingpin, there is currently something of a growing schism between Lenny, John Best (e.g. the more hardcore loony element) who believe that Aspergers Syndrome is not a disability and is not part of the spectrum and hence is not autism and a lot of other people who quite obviously have AS kids and are disagreeing very strongly with Lenny’s extremeism. As part of that debate, Lenny made the following statement:

I would like to think of what we do here is public debate, not “fighting”.

This illustrates perfectly the kind of denialism that exists amongst Lenny and his members. The Yahoo EoH group is a closed access list. You can only access the group if you join up and are accepted as a member, which is what I did back in 2005. Yet Lenny really believes that this closed access list is public debate. He _has_ to believe this as he is a firm believer (as we have seen) of political and legal definitions of autism and autism aetiology. In his world view, you need to _manage_ the PR. You need to nudge it in the right direction, much as Lenny’s colleagues from the NAA did when they lied about Paul Shattuck as they disagreed with his results.

By contrast, the Autism Hub bloggers operate openly. Their opinions are challengeable directly on their blogs. Good science is challengeable. It can be challenged by using the scientific method. There is no ‘management’ of information going on here. No one flip-flops between crucial elements of their beliefs and hopes no one notices (such as Brad Handley has done).

The interviews I have done (and am doing now) have been to periodicals that concern science or touch on the science of autism from a parents perspective. I noted with no small amusement this morning that ‘the other side’ are resorting to interviewing each other – Erik Nansteils Autism Media site carries an interview of David Kirby interviewing Katie Wright. I bet that’s an in-depth and truth revealing interview.

I believe that promoting connections between autistic people and science is the absolute best way to get good science regarding autism. I hope to do my bit in making the web work _for_ the promotion of these connections. I hope that our growing community never gets sucked into the tarpit of closed access lists that crow about the achievement of ‘converting’ celebrities and media persons. This is why I set up the Autism Hub and the Autism Parents Forum. So that we can grow as a community and come closer together. I hope to do more of this in the future. I want my email contact list to be full of the names of autistic people, scientists, responsible authors such as Arthur Allen and Brian Deer and parents that, like me, want to benefit from this growing relationship. I couldn’t care less if I never get Lou Diamond Phillips or Don Imus’ email address.

Media and politics or science? When it comes to understanding the science of autism, which will yield better results? Bear this in mind as you consider your choice – science is amoral. You cannot hide, distort or disfigure scientific achievement forever. If something is scientifically accurate, its truth is self evident. No matter how many politicians you have in your pocket, no matter how many media contacts you have, gravity will always be a force of attraction. The power of repulsion belongs to those who would deny that.

17 Responses to “On media, neurodiversity and science”

  1. Another Voice May 29, 2007 at 10:38 #

    Very well put! Straight forward and from the heart.

    A few will object to this but that same few will object to anything that does not paint them as victims.

  2. Sharon May 29, 2007 at 12:24 #

    How cool, we’re a movement!
    So what if they have Lou Diamond Philips, we’ve got Sigourney, and she is far, far cooler.

    Well said Kevin.

  3. bones.0504 May 29, 2007 at 13:39 #

    Very well put, Kev.

  4. kristina May 29, 2007 at 15:24 #

    Just so long as we don’t have to be called “the ND”—–this was invigorating to read. Thanks always.

  5. Melissa May 29, 2007 at 15:57 #

    Bravo Kevin! Excellent post; I’m forwarding the link on to family members as this is a must-read.

  6. laurentius-rex May 29, 2007 at 19:32 #

    This is too much I had a comment I have lost it twice because of your inaccessible spam control, believe it or not some people are dyscalculic and cannot even calculate simple sums.

  7. laurentius-rex May 29, 2007 at 19:38 #

    I was trying to say before I was interupted by two more wrong answers to the sum!!!, that the battle is not being fought or won on the scientific front it is a political battle, and economic one, about education, welfare, employment rights, housing, you name it.

    Scientists are a small cog in a much larger machine and the media is where the battlefield lies.

    NT’s are not the heroes in this battle either.

    The neurodiversity movement risks becoming the new Fabianism as against the real roots socialism. The polite drawing room version of what counts for the struggle.

    This blog world remains a side show. Why do I bother, I guess I am just a sad blogging addict 😦

  8. Kev May 29, 2007 at 20:33 #

    Larry I am not suggesting that ‘the battle’ is purely scientific.

    What I have said in this post is that the _scientific aspect_ of ‘the battle’ will be fought and won on scientific grounds. This post abounds with phrases such as ‘I believe that promoting connections between autistic people and science is the absolute best way to get good science’. Nowhere have I said that science is the be all and end all of this fight.

    I have also not suggested NT’s – or anyone else – are hero’s.

  9. Rich May 29, 2007 at 20:43 #

    I have seen the Wright-Kirby interview and do not recommend it unless you are a masochist. Kirby characterizes people opposed to the vaccine theory as people who believe autism is purely genetic, though I challenge him to find a scientist who says “purely genetic” for complex disorders like autism. But Katie assures us that Autism Speaks “will not be getting rid of genetic research.” Thanks, Katie. I was so worried! In response to Kirby’s question about why her parents can’t get more environmental research done, Wright blames NAAR. She says that Autism Speaks is saddled with conservative (read: rigorous) scientists opposed to innovation and that it is time for them to go. “Their kids are already grown,” she says, and should make way for parents of younger children on the scientific advisory board. Autism Speaks, she adds, will definitely be doing a chelation trial and a study of vaccinated versus unvaccinated kids (good luck!).

  10. Kev May 29, 2007 at 22:13 #

    Sorry about the spam control. I’m trying to find something that will be suitable for all and still not flood me.

  11. codeman38 May 29, 2007 at 23:27 #

    OK, I just failed the CAPTCHA test even though I actually entered the sum into the calculator in my computer (because I know I can’t do arithmetic very well in my head!). Something’s definitely not right here. Maybe I just took too long to type my comment?

  12. codeman38 May 29, 2007 at 23:29 #

    (The comment I was going to leave, for what it’s worth, was a recommendation that Larry just use the calculator program that’s preloaded on his computer, as that’s what I do when I encounter one of these arithmetic tests…)

  13. Ms. Clark May 30, 2007 at 00:58 #

    Lenny has a definition of disabled that allows his son to be disabled, and he has a definition of “autism” that only includes people disabled in the same way as his son. He says the “DSM” has the definition of disabled. But the DSM has a the definition of Asperger’s too, so if Asperger’s in the DSM then Asperger’s is a disability, and people with an Asperger’s dx are disabled… but not to Lenny.

    (I wonder if Lenny knows about how the US military judges a person disabled or not? Hint: it’s not all or nothing.)

    Lenny says people like his son can’t sit on boards of orgs like Autism Speaks, but only people like his son, or those who are even more impaired have a right to speak for his son. Adults with Asperger’s can not speak for what his son needs… because they are not as impaired as his son.

    BUT people who are totally not impaired (or they think they are not) CAN and SHOULD speak for what his son needs. It’s just that those who are more impaired than “normal” say, much more impaired than anyone on the Autism Speaks board, have no right to try to speak for anyone. They shouldn’t even be allowed to sit on the Autism Speaks board to address issues that affect “high functioning” adults… becuase “high functioning adults” no matter how impaired they are in real life, don’t have problems according to Lenny and they don’t deserve a voice… only totally normal people should be allowed to speak for those who can speak for themselves (the impaired and disabled but “high functioning” adults)… and for those who can’t…

    Only parents of “low functioning” “thoroughly disabled” autistics have the right to advocate for them. UNLESS the parents of those “low functioning etc” offspring are themselves on the autism spectrum. If the parent of the seriously disabled kid is autistic himself, his voice must be silenced… because he doesn’t understand what kids like Lenny’s kid needs…

    It’s really a thoroughly warped world Lenny lives in. No matter what — anyone who could potentially disagree with Lenny has no right to sit at the table with him even metaphorically (because they might prove him wrong).

    More evidence of his warped view is the fact that by changing the settings on the EoHam list he could have made all the postings public. He could still restrict who could post if he wanted. Like the “autism mercury” yahoo! group, the posts could be totally public. But he keeps it all hidden from public view and also hides the membership list, which is an usual move. Aut-advo has it’s list members openly viewable to members and anyone can join without passing a human to get in.

    Lenny says Asperger’s people have no right to call themselves “autistic”, same for PDD,nos, but Lyn Redwood is allowed to call her PDD,nos son “autistic.” Below I pasted a comment a mom gave in response to Lenny. The majority of “ASD” kids are not “classic autism” but Lenny has a flexible definition of tragically affected… if he needs to have 1 in 150 children destroyed by vaccines then Aspergers and PDD,nos are heinous, if he needs the autistic adults to shut up, then they are merely quirky and not even impaired at all.
    Here’s what a mom wrote to Lenny, yesterday:

    “Off the top of my head, Lyn Redwood, president and co-founder of safeminds, has a child with PDDNOS.

    Rita Cave Shreffler, executive director of the
    National Autism Association, has a daughter with asperger’s.
    Theresa Wrangham of Safeminds also has a daughter with PDDNOS.
    Laura and Scott Bono from NAA and Safeminds has a child with PDDNOS.
    Lugene [sic] Clark of No mercury and also sits on the board at A-Champ has a son with asperger’s.
    Has their referring to their children as having autism affected you in some adverse way? Has their advocacy been at the expense of your child by describing their children as autistic? ”

    By Lujene’s definition her son doesn’t even belong anywhere on the autism spectrum, but Lenny loves Lujene and her might rage against thimerosal that turned her normal son’s normal life into an Asperger’s nightmare at age 8. If her son was normal up until age 8, he is in no way autistic of any flavor whatsoever… except in Lenny’s world.

  14. Kev May 30, 2007 at 03:57 #

    I can’t find a decent substitute for the maths captcha so I’ve removed it for now.

  15. Sarah, Liam and Ryan's Mama June 9, 2007 at 01:49 #

    The entire arguement between AS and Classic Autism is so frustrating to me. I’ve been called some rather nasty things because some of the extreme biomed parents have read my feelings on the subject, and rather than discuss it logically, resort to guilt, anger, and personal attacks against my children and myself.
    I’ve pressed some of the environmentalists to present me with hard facts, and have yet to find any. The reason in my opinion? Because like our children, the circumstances from which they develop is so vast and varied that it’s impossible at this point to pin them down. Does Autism occur in unvaccinated children? Yes. Do vaccinations cause damage? I think like all medications, the possibility is there. However, much like the malaria and polio vaccine, I don’t feel the MMR vaccine was created to deliberately poison our children soley for financial gain.
    Kev, I truly appreciate all that you do for those of us who won’t blindly follow one path without question. My stance since beginning on this journey two years ago is that until it’s been medically proven by a team of doctors not on the DAN payroll or any other group with a vested interest in promoting an agenda, Liam (and my one year old Ryan) will have as normal a life as I can provide.

    Genetics just makes too much sense for us to ignore, and between my husband and I, you can point to almost every trait of our older son, only not magnified to the strength he possesses. I’ve been told that I’ve got my head in the sand, and that I’m irresponsibly and deliberately risking the health of my children because I choose to vaccinate due to their prematurity and I let them eat what ever they’ll eat since eating is such a struggle in the first place.

    If we’re ever going to make any progress at all, we need to unite for the common goal of making our children’s lives better. The Autism is already there. It’s not going away. Like other behavior issues, it might improve with age. But we can’t go back to the womb and swear off fish and avoid walking past a dump that might have a few old thermometers in a heap someplace. Let’s focus on helping our children love and be successful with who they are, not condemning chemicals while we’re shooting our kids up with… more chemicals on a possible whim.
    Somewhere between all the therapies, books, support groups, relationships with other parents, and daily struggles, we have to remember that our children are still our children at the end of the day. My love isn’t impacted by my boys’ Autism. In fact, I think we’ve got such a special and unique family bond and I feel that Liam and Ryan were given to us for a reason that we’ve still just begun to unravel.

    We all hurt. We’re all confused and some of us might still be angry. But let’s not take it out on one another. I’m no scientist, and I don’t know too many of them personally. I am, however, a mother who’s in touch with her heart and her boys, and if I choose not to use certain methods with my children, it doesn’t negate that fact or my love for my boys.

Trackbacks/Pingbacks

  1. Mutterings Of A Mindless Mommy » Blog Archive » “Autism Everyday” Backlash - May 29, 2007

    […] Okay this post seems to have meandered a bit – just a braindump on my part that started with Christschool’s video.  I wanted to close this post with a link to post made today by Kevin on his Left Brain/Right Brain blog.  Kevin is a fantastic blogger and neurodiversity champion.  Enjoy:  On Media, neurodiversity, and science. […]

  2. Left Brain/Right Brain » Nothing is decided here - June 3, 2007

    […] prime example of Larry’s purposeful misinterpretation lies in this comment in which Larry berates me […]

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