Dr. Bernard Rimland, 1928-2006
November 21, 2006 by Kristina Chew, PhD
Filed under Health
I first came across the name of Bernard Rimland when I was reading Catherine Maurice’s Let Me Hear Your Voice: A Family’s Triumph over Autism back in 1999 and was struck by his personalized touch in responding to families whose child had just been diagnosed with autism. Dr Rimland seemed ever ready to get on the phone to speak with a parent, to listen, to help. I have encountered his name constantly during our Autismland journey, whether for his 1964 book, Infantile Autism: The Syndrome and Its Implication for a Neural Theory of Behavior, which—counter to the then-prevailing theory that autism was caused by bad parenting—argued that autism was a biological condition; for writing the Introduction for so many new books about autism; for promoting biomedical treatments for autistic children through the “DAN!” conferences. It was a few years ago that I saw Dr. Rimland receive a Lifetime Achievement Award at the annual conference held by the Eden Institute; afterwards, on finding him standing quietly just outside the auditorium, I spoke to him as one autism parent to another.
In memoriam Dr. Bernard Rimland and with all the best wishes to his family.
Dr. Rimland was pretty unfairly villified by some of the autistic community. It’s a shame, really.
He did seem to put much of his energy into promoting biomedical treatments for autism in the past several years; we used to subscribe to his ARI newsletter.
What, exactly, is so wrong about a cure for autism? It certainly would help several autistic people. I guess that the anti-cure autistics have too much selfish, foolish pride to admit to themselves that some autistics are, in fact, worse off with their condition and that it is far more than just a “difference”.
‘Someone’ might wish to consider that wanting to cure a ‘child of autism’ in order to have their dream child is probably as selfish a motive as the one s/he has just imputed upon us autistics.
What makes life miserable for autistics isn’t the autism. It’s people like ’someone’.
“someone” is still hiding.
If you’re so broken, find out what the problem REALLY is. I’m not broken. Neither are any of the autistic kids I know. But an awful lot of the NTs I know are shattered.
Thre are other aspects of Rimland’s advocacy that kept many of us from applauding him as a hero.
For me, the rude awakening came back in the late 1980s when I attended an autism conference in my hometown. He was the invited keynoter.
He spoke (the recent death of Bettelheim was one of them – and he made it clear he didn’t grieve that person’s passing one bit). He ended his remarks early to beg our indulgence – he wanted to show us an important video about a much-maligned “treatment.” It was a video on the SIBIS – the early version of the shock-delivery system used to torture people with developmental disabilities into compliance.
He also came out as a strong and often nasty opponent of inclusion advocates – he coined the word “advozealots,” apparently in imitation of Rush Limbaugh’s style of mockery.
He was a complicated man with a mixed legacy – but what I remember the most is his praise and promotion of the SIBIS – because I witnessed it.
–Stephen
No, David, the parents are not concerned with curing their autistic child in order to have their “dream child”. They are concerned about curing their child because autism DOES get in the way of daily functioning and it can and will impede their development in the future.
It is true that some autistic people will grow up to have very little problems in their adult life, and will indeed become more different than disabled. I am one of those people. However, I am not going to speak for those autistics who aren’t lucky enough where that is the case. I am not going to say that they are better off without a cure when they very well could be better off with a cure. Why can’t you swallow your absurd sense of “autistic” pride and realize that? You have no right to speak for those who have autism in a completely different fashion than you do (if you even have autism to begin with, but for now I’m wisely not even going to go there).
Accept reality,
Someone
I would also say that Rimland’s legacy is itself complicated—-I have only known about him for less than a decade, but even in that time the majority of his advocacy seemed to become dedicated to promoting biomedical treatments. I think I remember reading in one of his newsletters that he took the position that is some remedy helped one child, he would not be against it—-and perhaps that led to endorsements even of the kinds of “treatments” that Stephen mentions.
Someone -
A good many autistic people who aren’t “high functioning”, who do really qualify as “disabled”, don’t want a cure for autism. They want better accomodations and better acceptance by society, something the Deaf community has gone a long way to achieve and something the GLBT community is working toward (at least as far as acceptance goes). Things that can improve how they feel may be good, but an out-and-out “cure” is not.
I also remember him mainly as the guy who promoted institutionalization for certain people. People who could well have been me, in different circumstances. (Because I am one of the ones considered severely disabled, and I happen to think that we need more protection from ideas like his, not less.) I am not likely to forget that in a hurry, nor his physical assault on an autistic person I know (who can out herself if she wants to, but I won’t).
‘Someone’: “Accept reality,”
You try it.
I live it every day, as does Kassie, and Amanda, and my ex-wife, and my daughter; what it is that stops us is other people being too self-absorbed in their own values that they forget that we have values too.
As you have managed to demonstrate very clearly.
Oh, and Someone: “You have no right to speak for those who have autism in a completely different fashion than you do (if you even have autism to begin with, but for now I’m wisely not even going to go there).”
How do you know that I didn’t start out looking every bit the same as the typical autism-poster-boy in the 1960s?
Because, as it happens (according to my mother in her recall of my childhood AND Professor Digby Tantam in his assessment of what is in my medical records), I actually was the poster-boy for classic autism, at least for the town I used to live in.
And I have never experienced cure, and nor do I want to.
Now give me your premise for suggesting that you know more about being autistic than I do.
Incidentally, my MEd alowed me to specialise in the whole area of autism; so I know it from inside and out. Unless you can be very certain of your case, it is not a good idea to piss me off with empty remarks, if you are trying to head that way. I’ll listen to a reasoned argument but I won’t stand for pissy little remarks designed to ‘put me in my place’. I’ve been in that place, and it wasn’t autism that put me there.
It was people with attitudes remarkably like yours.
Julia: Have you actually met these people, or are you just hearing about these people online? Because people can be anyone they want to be online. For instance, I could say on the internet that I’m a 19 year old girl with Down’s Syndrome-except that in real life I’m not. And aside from the common knowledge that most people with Down’s are basically chronically offline you wouldn’t be none the wiser. That’s common knowledge. I’m not saying that anti-cure LFAs don’t exist, I’m just saying that you’re going to need a more credible source than the internet.
David: No, I’ve just demonstrated that my opinions are different than yours. And that’s perfectly fine.
Oh, I didn’t catch your later comment David. Truth be told, I have no way of knowing whether you are telling the truth about being the poster boy for autism (since I don’t know you in real life), but I’ll assume that you are this time, just to avoid a sticky situation.
I never said that I know more about autism than you. I do certainly feel that I don’t know less than you, though. While it is true enough that you do hold a professional degree (supposedly), that in itself does not mean that you know about autism “from inside and out”. Even if I had a PhD in Clinical Psychology (which I am aiming for) I wouldn’t hold such arrogance. You should be open to the likely possibility that there are still some things that you don’t know about autism.
It’s fine that you don’t want a cure; that is your personal choice. But I feel that you intend to make that personal choice for everyone else with autism, and I kind of object to that. There are those with autism who would be better off with a cure, and there are even those who would want to be cured (not speaking for myself; I’m fine either way). You can’t speak or make decisions for those who’s opinions and situations differ entirely from your own, or at least you shouldn’t. That’s all that I have to say for now; it should be added that I wasn’t trying to attack you.
Most people who were at Autism National Committee’s conference this year have met, or at least seen, me, and can vouch for my existence, as well as definitively identify me with these photographs and descriptions. Anne Bevington, Kathleen Seidel, Joel Smith, Phil Schwarz, Laura Tisoncik, etc, have all met me. I have likewise met others, including Larry Bissonnette, who have met that general description. There is no big conspiracy to make it seem like I exist when I don’t, I can assure you, and the same goes for Larry.
Amanda – thank you.
Someone – I was thinking some of Amanda, who commented above. I have not had the good fortune of attending any conferences yet, but I plan to at some point in the future, which will give me a good opportunity to meet a lot of people. (And there are a couple of people I know only online who most vociferously don’t want to be “cured” of their autism; if I visit one of them, should I comment here to let you know that?)
I’m not trying to say that people like you don’t exist, it’s just that I have yet to meet people like you myself. It’s an honest mistake.
Julia – Fine by me, but I probably won’t be watching this entry by then. My main point is that not every autistic is anti-cure, and there is absolutely nothing wrong with that. We are all entitled to our opinions.
I don’t know that anyone believes every autistic is anti-cure — to expect a group of people to be monolithic in their opinions doesn’t make sense. But there’s also no grouping of autistic people who are uniformly pro-cure.
Well I’ve sort of found that the opinions of the autistic online community at large are fairly uniform, so it wouldn’t be impossible to think that way. I could be wrong though.
Cure and anti-cure—-the discussion here reinforces in me the sense the whole notion of “curing autism” is problematic, to put it too simply.
‘Someone’: “That’s all that I have to say for now; it should be added that I wasn’t trying to attack you.”
So why write as if you were?
‘Someone’: “You should be open to the likely possibility that there are still some things that you don’t know about autism.”
I’m always open to that possibility, which is why I did the MEd in the first place. But as for me not knowing autism ‘from inside and out’, you have to be wrong on that: I’m autistic and have lived it. I’m also a psychologist and have studied it. That would pretty much define me as knowing it from inside and out. There is nothing arrogant about that statement.
‘Someone’: “No, I’ve just demonstrated that my opinions are different than yours. And that’s perfectly fine.”
So, I’m to be seen as selfish for having and expressing different views from those you hold, but you’re okay to do so? That’s what comes across there. Not the sort of attitudes I’d want in a clinical psychologist dealing with any issues I might be facing. And the problem for me was people with attitudes like yours. Looks like it always will be.
One thing to note: A “cure for autism” if developed, would not be the kind of “magic pill” (free of risks, free of side effects, etc.) that a lot of people probably envision in these kinds of hypothetical arguments.
Rather, a “cure” (or something people were calling a cure) would probably be some sort of experimental brain surgery, or some sort of gene-manipulation technique that could be imposed on a developing child in the hopes that it would change the way their brain structures formed over time.
Autism is not fatal, so it’s not as if this kind of experimentation could be justified as a lifesaving measure. Though there are problems with the very idea that autism is something to be cured, it’s definitely worth noting (as a separate issue) that the means by which a supposed cure would be tested, approved, delivered, and administered are likely to be tremendously ethically problematic.
Zilari, thanks for further pointing out the complexity, or rather the complications, of a supposed “cure for autism”—-”tremendously ethically problematic” indeed.
Being very much NT, I can’t say how much I have learned from all who have lived autism “from the inside out.” Thank you, and then some.
Well you all have your reasons for thinking in the way that you do, but I’m still solid in my opinions. This isn’t to say that I’ve lost the argument, it’s just that there isn’t much more to say right now. Better off start again when the time is right.
No winners or losers here: Just a good debate and discussion.
A pioneer and leader. We carry his torch forward.
Bottom line in all of this is quite simple:
Strokes – of bad luck, timing, genious, and the brain.
If I say I have it…then I do..and Bernie knew that, through me, early in 2001. Thankfully, as a scientist and colleaque, he respected my requests to not discuss my owrk publically until it was complete – 2008 will be a baner year
Rest peacefully Bernie. Yur Torch is in good hands.
Dr. Andrew Moulden BA, MA, MD, PhD.
A pioneer and leader. We carry his torch forward.
Bottom line in all of this is quite simple:
Strokes – of bad luck, timing, genious, and the brain.
If I say I have it…then I do..and Bernie knew that, through me, early in 2001. Thankfully, as a scientist and colleaque, he respected my requests to not discuss my owrk publically until it was complete – 2008 will be a banner year
Rest peacefully Bernie. Yur Torch is in good hands.
Dr. Andrew Moulden BA, MA, MD, PhD.