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Before I started writing publicly in the online forum of a blog about my autistic son Charlie, I tended to avoid not only discussions about “hot topics” in the autism world—vaccines, mercury, cure, cause, chelation, and so forth—-but to defer from making a decisive judgement about any of these. In the face of getting through the day’s adventure with Charlie—-a behavior squall, a splinter in the foot—-the question of “what causes autism?” took a backseat. From reading about different theories and treatments associated with them, I was more than aware that the hypothesis that the MMR vaccine might cause autism was an issue of contention, and not a little at that. I was aware of the dangers of chelation especially after a conversation with Jim who, after reading William Shaw’s book (it had a yellow cover in those days), kept noting the description of a child taking some chelating drug and (as one of the side effects) lying there motionless as if he were, well, not in the liveliest of ways. “We can’t do that to Charlie,” said Jim. And then, “”Charlie’s more than just something that happened because of a vaccine.”
Charlie is, indeed, and yet how often did I find myself reading about a family who swore that a child was “completely normal” prior to receiving a vaccine and then “became” autistic—how often did I find myself facing a representation of an autistic child as such a damaged, injured, sick child. Two years ago, Charlie was struggling; the solution for him has been, for the most part, the right kind of educational placement, the right kind of school and services. “Advocacy” for me is about standing up for the education and services that Charlie needs to excel (so that he is starting to learn on his own). “Advocacy” for me is not what it seems often to be equated with—the theory that vaccines, that mercury, causes autism. All of our children (autistic and not autistic) need to be educated—so why does the vaccine theory continue to endure and some parents to be more concerned about this than what a child is actually learning?
An editorial in the May 2007 Nature Neuroscience argues that the hypothesis that vaccines or something in vaccines (such as the mercury-based preservative, thimerasol) causes autism is not supported by rigorous scientific studies:
“Autism is no more common among vaccinated than unvaccinated children, and its incidence has not covaried with the presence of thimerasol in vaccines across different times and locations.”
The editorial suggests that claims of a vaccine-autism link continue to thrive despite a lack of scientific evidence because of the tactics of proponents of such a link, “whose strategies have become more extreme as the evidence against the hypothesis mounts.” Specifically, the editorial compares these tactics to those of “certain animal rights groups” (none are named, but I suspect that the editorial’s authors have this group or one with similar concerns in mind):
People who oppose the idea have been harassed with repeated calls, whether they have written a letter to their local paper (http://tinyurl.com/3dba3c) or an editorial for The Wall Street Journal (http://tinyutl.com/2obgfg). The harassment includes parents of autistic children who do not align themselves with the anti-vaccine movement. Kevin Leitch reports, “I have personally been told that because I am not chelating my daughter, I am a child abuser. That I am a murderer. I have had threats of violence made against me, and a few people have even sent personal hate mail to my seven-year-old autistic daughter.”
Kevin Leitch is the administrator of the Autism Hub and has shared the content of some of the “personal hate mail” he has received with me, and it is beyond tasteless (to describe it as “disrespectful” would be something more than euphemizing). And yet, despite the unfounding nature of the claims regarding vaccines and autism, proponents of such a hypothesis have been able to get their message out to the public, and even to wield some political influence. Under consideration now in the Minnesota legislature is a bill that “establishes a preference for vaccines without trace amounts of mercury”; if such a vaccine cannot be found, patients must sign an informed consent in which they acknowledge that the vaccine contains thimerasol and, “[g]iven the hysteria surrounding the issue, it is questionable how many parents would consent.” Indeed, according to the Immunization Action Coalition, similar bills have been considered in 18 other states, though none have passed.
The Nature Neuroscience editorial points out that measures such as the informed consent required by the Minnesota bill are in and of themselves enough to “suggest that there are hidden dangers in vaccines”; this mere suggestion is enough to worry parents of young children about any vaccine. And it is not science and knowledge that drives such concern and, indeed fears, but “anxiety” and “ideology“:
We urge legislators to base science policy on the best consensus among researchers in the field, rather than the emotional apeals of an agenda-driven group, especially one that attempts to bully into silence those with opposing opinions. Perhaps more importantly, autism researchers themselves need to make clear how far outside the mainstream those views are, or risk having more resources diverted in pursuit of this unlikely idea.
The scenario mentioned here has already occurred, as seen at last’s Institute of Medicine (IOM) workshop on autism and the environment. Treatments that are not only scientifically unproven but dangerous (such as chelation) were discussed and the parent advocates who were present had a specific focus to their advocacy—vaccines and mercury poisoning—rather than, for instance, education of autistic children at whatever age.
“Harassment.” “Hysteria.” “Anxiety.” “Ideology.” “Bully into silence.” I have put these terms into boldface above as they all can be seen as applying to the reasons for and the results of the “extreme tactics” of some proponents of a vaccine-autism hypothesis. (And some may claim that such terms describe other autism debates; these are charged subjects for all parties.) Alarmist language of “crisis” and “epidemic” further contributes to hysteria and anxiety in parents who, in the face of distorted claims and impelled by deep love of a child, are in search of answers and quite simply will do anything. In such a climate of confusion and distortion and simple worry about how to get through today—about what will happen tomorrow—the last sentence of the Nature Neuroscience editorial sounds a strong note and I repeat it from above: “…. autism researchers themselves need to make clear how far outside the mainstream those views are, or risk having more resources diverted in pursuit of this unlikely idea.” Parents need first to be decisive about what they do for their child, but it seems to me that scientists might be more decisive in stating their views on topics such as the vaccine-autism hypothesis that are “far outside the mainstream.” Having a good grasp of the facts and of the evidence can only strengthen the discussion, and even help us all to be decisive and to understand, debate about autism ought not at all to be silenced.
After all, it is thanks to all the viewpoints I have been reading, to all the debates (thoughtful and thorny, as the case may be) about things pertaining to autism, that I have become much more decisive about those “hot topics” in autism discussions—and that have impelled me to jump into the fray.
1742 days ago
[...] Harsh and sometimes ad hominem criticism and invective—-as well as some not unviolent tactics—- have been directed against those who state that there is no link between vaccines and [...]
1815 days ago
[...] their views” and also by harassing scientists whose research they disagree with by using tactics that recalls those of “certain animal rights groups” (see Nature Neuroscience [...]
1841 days ago
[...] borne out by the scientific evidence. An editorial in the May 2007 Nature Neuroscience compared the tactics of some autism advocates—and in particular, of those promoting a vaccine/mercury-autism [...]
1843 days ago
[...] April 25th post (entitled Theories and Tactics) on the Nature Neuroscience editorial on the tactics of those who [...]
Michelle, thanks for the Robert Martin speech notes. I had never seen that before.
Harold said:
“You assert without substantiation that I have misconceptions about the pro-neurodiversity perspective. Your assertion is incorrect.”
Every claim you have made about the pro-neurodiversity perspective substantiates my assertion. You keep digging yourself in deeper and deeper.
Harold said:
“I also disagree fundamentally with the view that high functioning autistic persons who become engineers, researchers, artists, professors of various topics, internet essay writers etc are entitled to claim to speak on behalf of autistic persons such as my son who have much more limited skills and life prospects. The actual life realities, skills and life prospects are fundamentally different.”
So let me get this straight — you think that *non-autistic* persons who become engineers, researchers, artists, etc. etc. are *more* entitled to claim to speak on behalf of autistic persons? How are *their* realities any closer?
The things that verbal and non-verbal autistic people *do* share (and verbal vs. non-verbal is the primary distinction you’ve been coming back to) are significant — the sensory, praxic, and affective components of autism, and the cognitive and communicative sequelae of the sensory and praxic components. It stands to reason that those who have those components of autism and can talk or write about them, have a great deal they can say on behalf of those who have those same components but lack the ability to talk or write about them.
What makes it so hard for you to see that, and take advantage of the perspective and insight you can get from those who *are* talking and writing?
Why do you think they would lead you astray, when I and others so clearly have found otherwise?
Finding and listening to people all across the spectrum — from people who can talk circles around me to people whose only means of communication is a keyboard, and even then only intermittently and with great effort — has made all the difference in the world to Jeremy, in the way his (non-autistic) mom and I have parented him.
Moreover, if you think that the purported divide between “high functioning” and “low functioning” autistic people is a permanent fundamental difference, you’re wrong. And you better *hope* you’re wrong, because if you’re right, that means that *no* interventions, *no* therapies, *no* educational supports at all will ever improve the outcome of the “low functioning” people to the point where any of it would have been worthwhile.
The reality is that there are interventions, therapies, educational approaches, supports, and accommodations that, although still far from ideal, have improved substantially over time and are continuing to do so — and that more and more so-called “low functioning” autistic kids are growing into far more enabled adulthoods.
And when they do, surprise surprise — they overwhelmingly agree with *our* perspective.
How are you going to explain to your son, when he is capable of reading what you write, the extent to which you have at times declared his future a foregone conclusion? You *do* hope that he will gain that capability as he develops, don’t you?
When Jeremy was your son’s age, we had no *clue* what his future was going to be. But we — and *he* — worked at acquiring skills and learning from the world around him, and at 16 the lower bound of the developmental trajectory ahead of him is considerably higher than it was when he was little.
I think much the same is true for Kristina’s son Charlie, following several years hence. The slow, incremental gains accumulate.
We still don’t know what Jeremy’s life will be like when he’s 30, but we’re not ruling things out as foregone conclusions. I’d bet Kristina would say the same thing about the prospect of Charlie at 20.
So yes, Harold, verbal autistic people *do* provide me meaningful input as Jeremy’s parent. And they would you, as Conor’s, if you were willing to lay down your misconceptions.
I hope Conor’s future is as bright as Jeremy’s, and Charlie’s, and Alex Bain’s, and all the many autistic young people growing from significant handicap into more enabled and autonomous adulthoods.
Mark Osteen, the organizer of the 2005 Autism and Representation conference at Case Western Reserve University, at which I first met Kristina and Jim, has a very severely handicapped adult autistic son. He’s written a memoir, and read from it at the conference: absolutely searing in what it describes. He and his son and his family have had a very, very hard time of it. Yet he said to me, of the work that verbal autistic self-advocates and their allies are doing, that we are helping to create a rising tide that lifts all boats.
If he, at the stage his son and his family are at, years entrenched, can say this, how much more should it be true of parents like you, of much younger kids, with much greater prospects of developing to the point where all the verbal autistics’ concern about housing and employment and higher education and civil rights and mutual support are going to matter *very* much?
I hope that several years hence, Conor’s expanding developmental trajectory, if not anything I or any of us say here and now, will lead you inevitably towards our perspective.
People First Canada has representatives in New Brunswick (in fact, they were founded at a meeting in NB, in 1991).
From excellent speech notes by Robert Martin, who has lived the consequences of the assumption that certain kinds of people just naturally belong in institutions:
“I have learnt that discrimination and segregation becomes an accepted part of the community. Our parents begin to accept that it is right. Even those of us with the disability begin to accept that it is right. Everyone is in their rightful place and the community begins to congratulate itself on how it cares for the less fortunate. “Don’t they have a wonderful place to live, don’t they have wonderful staff and don’t we spend a lot of our money caring for the unfortunates” they say.”
Mr Martin also points out,
“For me empowerment and participation is just as essential for those of my friends that do not walk
and talk. Just because you cannot talk it does not mean that you do not have a voice.”
Kristina, I think that for the vast majority of parents of autistic kids, advocacy means trying to get effective medical and educational services for their child from providers who are acting with insufficient information, who resist what they consider too much individualizing, and who are in the habit of (or are even trained to) downplay the importance of parental concerns and information.
Harold, does NB have a clients’ self-advocacy program for developmentally disabled adults in residential facilities?
Thank you Apple M by your words. After a lot of effort and contacts we finally got 2 local doctors who help us-beyond others (peditrician and neurologist) but I can assure you that it is not easy (many times impossible) to get the adequate help.
Maria
In the UK no doctor wants to treat a autistic child with GI or bowel problems (presumably because of Dr Wakefield) this is discrimination and I am surprised the UK based “advocates” never mention this.
My family’s hearts are with you Maria
Kev, thank you very much for the clarification. You are right. I missed the http both times I have had problems with links.
“I support the right of those autistic persons who can speak for themselves to do so and to assert all of their human rights”
I don’t think we can simply divide all people on the autism spectrum into two group, those who can and can’t advocate for themselves. Of course, other than an individual, (typically) noone know better what to do for a child than a parent, but have you not learned anything about how your son’s thinks and why he behaves as he behaves from listening to other people with autism? If not, you are missing out on vast resource. BTW, please post the link to your blog, as I don’t think I’m familiar with it.
Maria/Kristina:
You need to make sure you add the ‘http://’ part to the addresses. If you just use http://www.blah.com then the website thinks you’re referring to a file on *this* server.
Thank you Kristina.
This is the second time I have the same problem. when I introduce a link such as
“a href=…>Text at the end- always the webaddress of your specific blog entry is added to the link. Perhaps it is some internal assignation of your blog format?
No comment lost from myself; thanks again.
María and Michelle: Apologies for any links not working or for any delays in comments getting posted. Email me if you anything you comment does not get posted.
One thing I hope to come out of this discussion is a change in what autism advocate means—the term (in the US at least) seems too tied into persons advocating for one position such as that specific elements might be causing autism. Advocate can mean a lot more.
The link did not work when I tested it.The webaddress I included was
http://www.searchingequilibrium.blogspot.com
Hi Phil
You said
” The bottom line is that we make things better for Autistics whether it be Canada, the US, Australia or anywhere else.”
I live in Argentina. My autistic son had 45 medical conditions that required proper testing and proper diagnostic and treatment. No mainstreamed doctor had a clue and only our personal research and foreing/international advice we could find properly these conditions-in local labs.
Even when theoretically you can try to affect some sociological view; the reality says- that the medical (adequate), educational, emotional and sociological needs of my son in my country have only one advocate, at the present status of the things for HIM. ME and US (his family) mainly.
Even when the respect and consideration for autistic people is a view that I share, the consideration in advance of the parent like me that have found- ethically and scientifically based- medical conditions needed to be properly treated, away of extremist views of any kind , is a serious misconsideration , first of all, of the human rights of my autistic son to the proper and adequate medical treatment of his medical conditions, if you like, concomitant to the autism diagnosis. The denying of them, of their importance in his health, the questioning in advance of us ( his parents and advocates) without the knowledge of the full view- or the interest- is also a misjudgement and it is not helping, at least to my son, 15000 km away USA/Canada/UK.
The sad aspect I see is the lack of interest and the implication of certain extremism in advance and the rush to the judgement every time that parallel ideas are proposed to be discussed or personal experiences ( even when they are anecdotic evidence they are valid when you live them).
If you want to read more about my personal position you can read
here about them. I will be glad to discuss with you any aspect you can be interested on.
Sincerely
María Luján-Argentina
And now I have to point out that the correction (with the time 7:57 on it) above was submitted after I made an error in a previous post (submitted at 7:51) that’s apparently stuck in moderation. So the correction has showed up but not the message it’s correcting.
Sorry Kristina.
I wrote,
“Mr Doherty has stated his position on his blog that the major laws that protect and benefit non-autistics (without which they could not work safely).”
I meant,
Mr Doherty has stated his position on his blog that the major laws that protect and benefit non-autistics (without which they could not work safely) should not protect and benefit autistics.
Sorry!
For the “autism reality” about the exclusion of autistics, see this letter, and follow the series of links across the top to get updates. Particularly, see the Canadian government explanation for why ASC excludes autistics here, an explanation I was told (in a meeting, by the Director General of the Office for Disability Issues) they obtained from ASC.
Autistics were banned from participating (as anything but lunch-time entertainment) from the Canadian Autism Research Workshop and the subsequent White Paper, a collaboration among ASC, the CIHR, NAAR (which is now Autism Speaks), Health Canada, and the Office for Disability Issues.
According to Mr Doherty, this was done with the full approval of Jason Oldford (ASNB’s former autistic board member). ASNB did not object to autistics being banned from the CARW.
My local autism society is DAN!-based and anti-vaccination, and they have managed to find an autistic adult to sit on their board and support this. Does this mean he’s right?
It’s interesting that Mr Doherty allows Mr Oldford to be an expert in “autism reality” (Mr Oldford can testify about how all autistics should be treated–indeed, he wants all autistics to be like him, he has stated), even though Mr Oldford has multiple university degrees.
So expertise in “autism reality” isn’t dependent on a person’s characteristics, but on their political position. I too could be an “autism reality” expert if I were prepared to agree with Mr Doherty and anti-scientifically write off (as Mr Oldford has written off, in his published writing) all autistics who have not had Lovaas ABA starting early in life.
Meanwhile, autistics continue to be banned from CAIRN (Canadian Autism Intervention Research Network). Autistics were banned from the Senate Committee round table meeting about autism research. And so on.
I wonder if Mr Doherty knows how it came to be that Mr Oldford is an ASC advisor (see ASC’s own testimony in the Senate hearings, about how they had to change, and who they attribute this change to), and how it came to be that autistics, including ASC’s Mr Oldford, were invited to testify in the current set of hearings.
Fortunately, this piece of “autism reality” history is officially documented and available online. As with the other misinformation Mr Doherty so prolifically distributes, accurate information is available for those interested in reality, as opposed to “Mr Doherty reality”.
My own position is that autistics deserve the recognized standards of science, ethics (including professsional ethics), and advocacy that automatically protect and benefit all non-autistics, including Mr Doherty, and without which he could not proceed safely in society, much less succeed in it. My position is also that services for autistics, whatever these services may be, should be asked for accurately (with respect to the science), ethically, and respectfully.
Mr Doherty has stated his position on his blog that the major laws that protect and benefit non-autistics (without which they could not work safely). He also anti-scientifically promotes the autism “epidemic”. This has the effect of denying the existence and the lives of older autistics. This has the effect of ensuring that governments do not acknowledge older autistics, much less take responsibility for providing us with the kinds of services that non-autistics like Mr Doherty depend on and can take for granted.
I could fill a book with all the defamation “autism advocates” have generated in my honour, and I could keep more than one lawyer busy, full time, dealing with this defamation. But I have more productive and positive things to do with my time. The best way to deal with defamation (unless you have a lot of spare time and money) is briefly. Then use the defamation to illuminate the values, standards, methods, and character of those who emit and disseminate it.
You can see a few of my brief responses to some of the more official defamation I’ve experienced here (ASC links to the currently defunct “autism advocacy” flagship website, otherwise known as the “hate-site”), here, and here.
I have never claimed to represent autistics, or anyone else, unless specific autistics have individually given me this kind of support. When I was arguing to have autistics included in the Senate hearings, in the Senate round table on autism research, in ASC, wherever, I always pointed out that I don’t care if they have “I hate Michelle Dawson” written on their foreheads. I’m concerned with science and ethics, and ethics dictate that you do not determine the future of a group of people in their forced absence.
There is an organization of Canadians who have a lot of experience dealing with those who, like Mr Doherty, who are certain that “low-functioning” people belong in institutions. People First Canada was formed by and for people who were institutionalized because people like Mr Doherty insisted that they could not live anywhere else. Many autistics, myself included, have lived the extreme consequences of the insistence by “autism advocates” that autistics just naturally belong in institutions.