After over three years of blogging about autism, I’ve finally found the right words to express my feelings, as a parent, about autism and neurodiversity.
I admire and appreciate the important and necessary work of Jim Sinclair for both autism, and in general for people with disabilities. It is an extremely well-written and concise expression of rights of those with disabilities, the folly of many parents in missing the individual beauty and development of their own child in the constant misguided comparison with an incomparable standard, and the need for public accommodation and acceptance of autism as a different way of being. I myself have used that expression, “a different way of being”‘ in conversation, and it describes autism well, without defining it as less-than.
I do not, however, accept the entire message and implications of the neurodiversity perspective. I understand the need for a concise theory, but sometimes the neat and tidy package does not fit some of the intricacies of reality.
I do not accept a logic chain that precludes reasonable treatment efforts particularly early education / intervention from being defined as anything but unacceptance, of one’s child and autism in general. I fully love and accept my child, regardless of the abilities he has now or in the future. I don’t accept that it makes me a lesser parent in that I am sending the message that my son is “not good enough” or I don’t accept him as he is. I am a full parent to my children. The same parenting ideals hold for my daughter who is neuroytpical. I am parenting her, based on my love, her needs and what will help her to live a full and happy life. I have always worked hard as a parent to educate her. Does that then imply that I do not accept her? Of course not, it means that I want to educate, stimulate, give options for how to be in the world, teach skills to foster communication and connection with others, as much independence as possible by trying to be the best possible parent.
If you logically extend Jim Sinclair’s argument, then no child is accepted if they are being educated. If we accepted children as they are, then we would not need to alter their natural state of being by educating them. Would the neurodiversity perspective have me feel guilty or wrong for parenting appropriately as per my definition of good parenting?
Sinclair’s stance works well for natural disabilities, but autism may not always necessarily be the natural sate of being for a particular individual. I do believe there may be some on the spectrum who have autism from a genetic basis, or that autism began before birth, which may indeed fall completely under the neurodiversity umbrella. However, the possibility of environmental triggers playing a role in autism exists, which would mean the possibility exists for reversal or treatment of same, as an unnatural state of being in certain cases. I love my son whether he was born with autism, developed it in utero, or was injured environmentally at some point which triggered or enhanced it. Just as parents whose children have cancer fully love and accept them, but still want to find a cure or treatment, as well as give them an enriching and happy life, how ever the condition progresses, so I want for my son. As for using cancer as a comparison, the comparison begins and ends with the way I have used it specifically in the above example.
I agree with Mr. Sinclair that rigid insistence that the child with autism communicate with neurotypical people in only a neurotypical fashion is selfish and narrow-minded, as well and limiting to the parent-child relationship and the child’s development. I agree with the need for those with autism to have allowances, accommodations, ways and places to be in the world. Education of the public regarding the rights of those with autism is sorely needed.
I applaud the work and feel that the neurodiversity perspective is a necessary part of public education and awareness, but I wish the perspective did not require a scapegoat to secure the strength of its message. Parents benefit from such guidance to a point, but not the accompanying pressure and judgment.
Words cannot define the overwhelming love I feel for my son, and no “perspective” will tell me that I am not acting in his best interests, and that I as his parent, am in the appropriate position to do so.
Finally, I fully and unconditionally love and accept my son (and always will), and I want the very best education and treatment for him. The two concepts are not mutually exclusive.
As you may have gathered from the indented quote (and a reference to a daughter I don’t have), these words are not mine. They are the words of Marni Wachs, and autism mother from Winnipeg, Manitoba, posted as a guest blogger at Harold Dougherty’s Doherty’s blog Facing Autism in New Brunswick. I’ve touched on many of these themes before at various times, but have never been able to pull it together as neatly and concisely as Marni has.
Thanks to Marni for allowing these comments to be posted, and thanks to Harold, who is known for an occasional rant against neurodiversity and the Autism Hub, for posting comments that include the statement, “I applaud the work and the feel that the neurodiversity perspective is a necessary part of public education and awareness.”
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EDITED (7/22): Based in large part on Amanda’s comments to this post, I’ve gone back and modified the original post by highlighting those things that I feel and believe. (Of course, I could have been much more concise about it and simply said, as Wade did in the comments, “Parenting is parenting,” but conciseness is not something I’m often accused of.)
Also in response to Amanda’s comments, I will be discussing Jim Sinclair’s writings in a future post.
no straight lines 
I have my differences with Jim Sinclair, but more about what he does and how he does it than with his ideology.
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Once again I find myself in a state of open-mouthed disbelief after clicking on a link from a site which purports to “promote…acceptance and a positive outlook”. Are you seriously putting your name to an article which adds disclaimer to the cancer analogy (indicating she knows exactly how offensive it is) but still goes on to use it anyway?
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Adrian,
The article does not compare autism to cancer; rather, it shows that a parent’s hopes and desires for her child are the same regardless of a particular hardship (or lack thereof). The disclaimer isn’t intended to deflect complaints about using a cancer/autism analogy but to help prevent people from reading it as a cancer/autism analogy.
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I disagree with the idea that Jim Sinclair decries education or any kind of proper intervention for autistic children, as some kind of “lack of acceptance.”
Proper education is perfectly okay and even encouraged. It means, however, that parents and teachers be aware of any signs of overload, stress, or other disturbance in a child’s life. 40 hours a week may be too much for some autistic children.
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True, ‘cancer analogy’ may be better termed ‘cancer metaphor’ which is possibly even worse, given the two conditions are being linked in more knowing and circuitous way. Or would you have us believe that from a vast array of possible mishaps and hardships the author picked cancer, one of the most offensive and well-worn autism clichés, purely by unfortunate chance?
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re: The Integral,
I agree that Sinclair doesn’t do this himself, but as the author of the article states it is a logical extension of what he says.
In your comments you use the term “proper” twice. This is, I think, where the trouble really begins because “proper” is a very subjective term. I’ve found that many times what I believe to be “proper” for my son is seen as “offensive” by others.
Your points about education are valid, though I might change your last sentence to simply read, “40 hours a week may be too much for some children.” Qualifying this to refer only to autistic children is unnecessary and, to me, implies that autistic children are less capable than non-autistic children.
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Brett,
Help me with this. How is it a logical extension of Jim Sinclair’s article that a parent shouldn’t educate their child? I’m baffled by some parents who believe neurodiversity means do NOTHING. I’m not trying to be provocative, I’d really like to be able to understand this.
As far as 40 hours a week, no child at 2,3,4,5….is capable of doing 40 hours of week of DTT without emotional damage in my opinion as a parent.
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Adrian,
I don’t believe this is any more a “cancer metaphor” than it is a “cancer analogy”. She’s not comparing the condition of “autism” to the condition of “cancer” at all.
As to why she chose to use the hardship of cancer to make her point, I can’t say. But as a parent of an autistic son, I know exactly what she is getting at.
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“But as a parent of an autistic son, I know exactly what she is getting at.”
As an autistic PARENT of an autistic son, I do NOT know what she is getting at.
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CS,
What she’s getting at is that parenting is parenting, regardless of the obstacles. We unconditionally love our children, and we accept them as they are. What we need not accept is the inevitability of obstacles that might result from conditions they may have.
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“What we need not accept is the inevitability of obstacles that might result from conditions they may have.”
Wade, there are two roads one can take but only one will take you to a world without obstacles. One road is wishful and not reality based, and one is reality based but hard won, but will take you to where you want to go. Perhaps not in our lifetime, but in the lifetime of another generation.
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Some quotes from Jim Sinclair that you either seem not to have read or not to have absorbed:
Does this mean I think autistic people shouldn’t have any treatment or education? Not at all. Every child needs to be taught to function in the world. Every adult encounters problems and challenges from time to time, and needs to learn new skills or seek help from others. My point is that autistic people should be helped to function in the world as autistic people, not to spend their lives trying to become non-autistic.
If an autistic person is engaging in behavior that is dangerous or destructive, or that interferes with the rights of others, then certainly this is a problem that needs to be resolved. If an autistic person lacks a skill that would enhance that person’s ability to pursue his or her goals, then every effort should be made to teach the skill. The problem I see is when autistic people are subjected to intensive, stressful, and often very expensive treatments simply for the purpose of making them appear more normal: eliminating harmless behaviors just because non-autistic people think they’re weird, or teaching skills and activities that are of no interest to the autistic person just because non-autistic people enjoy those activities.
(from What does being different mean?)
Well, I know for a fact that there are at least some parents who are not unhappy and miserable about having autistic children, and do not want their children cured–though they’ll move mountains to get appropriate education and support programs for their children.
and
Does this mean I think there shouldn’t be any funding or development for services for autism? That autistic people will be just fine if we’re left to handle things on our own? No. I just don’t see medical research as the appropriate focus of funding and program development.
My life is definitely not “just fine” as it is. I haven’t been employed at all in almost two years, and in all my life I’ve earned enough to (just barely) support myself for only a four-year period that ended disastrously nearly seven years ago. Is medical research going to help this situation? No: I need educational and vocational supports, and a workplace where I can be assured that being employed doesn’t mean being exploited and abused. I don’t have basic skills in self-maintenance, home management, or time management. Is medical research going to help this situation? No: I need skills training and environmental support. These are not things that NIH funds, or that they should fund.
Spend money for autism on special education, vocational rehabilitation, supported living, and community accessibility. But give my share of medical research funding to cystic fibrosis and cancer. Autism may be many things to many people–a way of being, a way of relating, a sense of self, a sharing of culture, a strength, a challenge, a shield or a tool, a gift or an impediment. But one thing autism is not is a disease.
(from Medical Research Funding)
There is no inherent conflict between accepting and working with autism on one hand, and promoting increased skill development on the other. It is the role of all teachers, counselors, and therapists to promote growth and learning. For professionals working with autistic people, the important issue is that autistic people should be assisted in growing and developing into more capable autistic people, not pushed to become like non-autistic people.
and
I take the view instead that autistic people, like all people, need to be taught to behave in such a way that they do not intrude on other people’s boundaries. If a student is displaying behavior that actively interferes with other people (such as unwelcome touching, taking things that belong to others, making noises when people are trying to concentrate, flipping lights on and off when other people in the room find it distressing), then it is appropriate to intervene, regardless of whether the student is autistic or not. But if a student is engaging in behavior that is merely weird but doesn’t affect anyone else (such as rocking, flapping, or spending free time sorting and lining up his/her own belongings instead of playing with other children), and if the behavior is not distressing to the student (as it would be in OCD, in which the person wants to stop the behavior but isn’t able to control it), then this is the student’s own business and not a matter for professionals to interfere with.
Autistic people might benefit from having NT social behavior explicitly explained to us so we can make informed choices as to whether or not we wish to learn certain behaviors. We do not benefit from being constantly told that our ways of doing things are wrong and that we must learn to do the same things NTs do.
If professionals are to help autistic people to live and grow as autistic people, part of this work needs to be with parents and schools and with the larger community. Just as autistic people need to learn that we can do weird things but we can’t intrude on other people, other people need to learn that it’s OK for autistic people to do harmless weird things. Professionals can educate the community and promote tolerance and understanding. We can help parents and other family members, school personnel, and others who deal directly with autistic people to understand how autistic people might experience and learn things. To me, one of the most exciting things we can do is help autistic people and non-autistic people learn to understand each other, and find ways to work together in an atmosphere of mutual respect.
(from Is Cure a Goal?)
Please, if you’re going to claim to be arguing against Jim Sinclair’s views, then argue against Jim Sinclair’s views, not against a version of them that does not include all of the above quotes.
Your post was not only frustrating and insulting on a personal level, but misleading to readers of your blog who might not have ever read Jim Sinclair’s work, and might not scroll down to these comments.
Further, I have noted over time, that after someone has heard that a person’s work says a certain thing, then when they read that person’s work, they filter out things that do not meet their preconceptions. Your post might cause people to filter out all the above quotes when reading through Jim Sinclair’s work, and come to the same false conclusions about it that you do. Your post almost undoubtedly will cause such readers to read the work of other autistic self-advocates with the same eye you seem to have read Jim Sinclair’s work with — and that makes it a lot harder for us to do our job or get our point across, when you sit around misleading people about what that point is. I do not know a whole lot of people (aside from, mostly, teenagers and the occasional younger end of young adults) who truly scapegoat parents, and I have never known Jim Sinclair to do so.
Jim Sinclair is far more careful than a lot of us are able to be in our wording. Xe makes things explicit that lots of people believe, but not all of us are able to make explicit at the same time as making other points. If you are encouraging others to read Jim Sinclair as if xe has said the many things you claim xe has said (that actually contradict what xe has said), then the rest of us, who are not always able to say these things (and who, unlike Jim, do not all wait until able to say these things before we write our opinions on other things), won’t even stand a chance.
Given that other autistic self-advocates have to face being stereotyped as scapegoating parents and not believing in early education and all those other things, then people have even more responsibility not to portray us in ways that reinforce those stereotypes, especially given that the stereotypes are only rarely true. (But the moment someone sees even one person who fits the stereotype, then it becomes evidence that the stereotype is true, rather than evidence that there’s a few people to fit any stereotype.) What you’ve just done is contribute to falsely stereotyping all of us, whether you’re aware of it or not.
It would be nice if you posted a new post describing where you were wrong about Jim’s opinions, possibly providing links and quotes such as the above quotes I have provided (all of the italicized paragraphs, all linked back to their original context for easy reference).
It would be even nicer if you provided an explanation as to why it is that what you said was potentially misleading about a lot more people than just Jim Sinclair. (Who, by the way, has dedicated a huge amount of xyr life to helping parents learn how to educate their children. As a lot of us have.)
And, by the way, otherwise my opinion on Jim’s writing is much the same as Larry’s.
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When a writer uses the “just as[…] so[…]” construction in the above way, an indirect comparative connection between autism and cancer in the mind of a competent reader is unavoidable. I’m afraid the English language doesn’t allow much wiggle room on this one. Juxtaposing cancer and autism yet again while apparently being fully aware of the appalling distastefulness of a direct comparison only makes its use more sinister.
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There are some who take a perverse delight in dropping casual allusions to the despicable cancer/autism comparisons that have been made by such as David Vardy, Gary Meyerson and Kim Stagliano. The history of this comparison and the responses of the autistic community are well documented. The potential for harm (and in quite a few cases actual harms) to autistic people by those who see them as diseased and miserable has been discussed thoroughly.
I think that Brett is aware of this. His choice to defend or ignore that usage here is the issue, not whether the comparison as stated is a “metaphor” or a full analogy.
Is this another example of “comparative studies,” which seems to mean in the case of this blog, “anything goes?”
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Okay, and I seem not to have read that this wasn’t you, but a quote. My bad. 🙂
But still, I would think you’d know better, and everything else I wrote still applies
These things are simply not logical extensions of Jim Sinclair’s views or the views of any other serious self-advocate I know, and to represent them as such is to misrepresent us.
Some of us have spent years explaining these things to you in depth, too. I can remember a post I wrote years ago with you in mind, “What not changing us means”, back when you raised some of these same objections. I really thought you knew better by now than to participate in this kind of misrepresentation.
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Neurodiversity is part of the general idea that disabled people should have human rights. Which part of this is Brett and Ms Wachs opposing?
Somehow, the fact that nonautistics have human rights has not resulted in all schools and universities and other services being closed down.
When did women have better access to education and services in Canada? When were we better off, when did we have better outcomes? Before we had basic human rights, and were often seen as sick and weak? Before we were regarded as “persons”? Or after?
How about disabled people? Were services and education for disabled people better before disabled people had human rights? Were developmentally disabled people better off before there were People First groups?
Brett and Ms Wachs (who possibly believes her son is “vaccine damaged,” see the list here) are saying that human rights and those who promote them get in the way of education and services and good outcomes for disabled people, at least when the disabled people are autistic.
Also, for Brett and Ms Wachs, cancer is a horrible disease that kills people, including autistic people. Regarding and treating healthy autistic people who do not have cancer as though we did, which is what both of you recommend, is not okay. Regarding and treating any healthy child who does not have cancer as though s/he did is not okay. And no one should have to point this out.
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Neurodiverse ideology =/= “Do nothing for your child”.
I am disappointed to see you giving that gross mischaracterization a voice here. It’s pretty insulting, especially to those of us proponents of neurodiversity who do a TON of work to help other people’s autistic children be the best them they can be.
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Yeah — and Jim Sinclair is definitely one of those people who’s gone above and beyond for other people’s kids, and with helping parents in other ways. I’ve never seen even the tiniest bit of dislike for parents out of xem, let alone scapegoating.
I really thought you knew us all better than to say things like this. It’s really surprising.
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If Marni Wachs thinks her extrapolations from what Jim Sinclair actually *wrote* are “logical extensions”, she *profoundly* misunderstands what Jim actually wrote. And unfortunately you do, too, if you agree with her.
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As someone who is about to be given a diagnosis of cancer, I take great exception to using this analogy. Sure, the anti vaxxer crowd use it all the time, as an attempt to promote the ‘disease’ model. It’s despicable, the most incredibly offensive tactic ever used and a pretty fair indicator of the moral vacuum inhabited by its proponents. And as for Ms Wachs she has some apologising to do, mostly to Mr Sinclair for deliberately misrepresenting and/or falsifying what he wrote. She should also take great care not to trumpet ‘environmental’ causes for autism in the complete absence of any evidence of such and also inthe absence of what could be meant by environmental in the first place.
Cancer is an imposition on the person and you can bet the bank that I’ll be fighting it tooth and nail. Autism is part of the person. Unfortunately, there are so many autism parents who cannot see the distinction, and because they cannot, they spend inordinate amounts of time trying to put a normal gloss on their offspring at the expense of real functional skills. Happens every time ‘speech’ is given priority over communcation, for example, though that doesn’t happen as much these days.
I’m going to go with the premise that Ms Wachs got Sinclair all wrong because she didn’t understand him. That’s not good, because there’s a ToM issue there, which basically points out that if she cannot grasp what an amazingly articulate adult autistic is saying then how is she coping with her autistic son?
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My 36 year-old son Ben, nonverbal with “low functioning autism” wrote the following comment:
Please publicly state that Jim Sinclair has a superficial understanding of autism because he does not know the nature of all human souls. Almost all Westerners are influenced by their culture and they cannot begin to understand autism.
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I’d disagree slightly with that, for similar reasons to the points raised about the distortion of Jim Sinclair’s writings. General readers and, more importantly, those affected by a recent autism diagnosis will be far more familiar with the common medicalized view of autism than with the specific kinds of autism-cancer hate speech practised by those named above.
It’s not a huge leap from one to the other, especially when comparisons with cancer are introduced by indirect means, couched in terms of parental hopes and dreams. Therefore I think the issue is just as much about clearly pointing out the exact nature and consequences of these deliberate misrepresentations as about the choices Brett makes on his own blog.
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Amanda, thanks for taking the time to provide quotes from Jim Sinclair to counter the assessment given in this post. If you look at the main post, you’ll notice that I have edited it slightly to more accurately reflect my own views. I will also revisit Jim Sinclair’s writings in a future post.
As for all the comments about the autism/cancer comparison, I sincerely apologize if I personally offended anyone. While I understand the invalidity of comparing being autistic with having cancer, I did not realize that this was “despicable” and the “most offensive…autism cliche.” I guess I should read more.
My viewpoint here was directed only at the reaction and feelings of parents when getting the autism diagnosis and then living the life. Essentially “mourning the loss of the plan I had for my kid”, not mourning the actual loss of my kid. I understand how some may extrapolate that into an autism/cancer comparison, but I don’t believe it is inevitable. I, for instance, have not made that leap. (It could be, of course, that I am simply not a competent enough reader to understand the implications I am making.)
I’m also not exactly sure how the question of human rights for autistics made it into the conversation….
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Brett,
Michelle can of course correct me if I’m wrong, but I think the question of human rights for autistic people gets into the conversation specifically because viewing autistic people as being sick or devastating or whatever all else the woman you quoted said (and others who decry neurodiversity’s proponents say all the time) results in viewing them as being something less than human, which results in limiting or eliminating their human rights altogether. And that sentence probably was very confusing, so let me try again.
When non-autistic people start talking about what a drain autistic people are on society and how important it is to change autistic people to being non-autistic because autism is so devastating, things automatically become about human rights.
When we focus on the “devastation”, on the negative, focus shifts from the humanity of autistic people to “what do we do about this horrible thing that is threatening our happy existence?” And the result is the denial of the humanity of the autistic person, which results in the denial of basic human rights to autistic people.
Because a devastation doesn’t have any rights – it’s not even human.
***
Oh, and for Ms Wachs, if she ever comes by and reads this:
I have an ADHD diagnosis. I work with autistic children. And I fully support the concept of neurodiversity. If the concept were all that you have incorrectly inferred, I would not have taken medication for my ADHD for several years, and I certainly would not spend my days educating autistic children. Perhaps a little closer reading on the topic is in order…?
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Jannalou,
I’ll have to think about your explanation about how all this leads to a denial of human rights for autistics, as I’m not sure I completely follow or agree. (Of course, it is very late and I should be sleeping.)
As for your comments to Ms Wachs, I encourage you to post your thoughts to the original post on Harold Doherty’s blog (link in the main post here). In fact, I’d encourage everyone who had comments here to post them for Mr. Doherty and Ms Wachs on his blog. I’m pretty sure that they don’t read 29 Marbles. (And part of the reason I re-posted her comments here is because I know that not many hub members – who make up the bulk of my readers – don’t read Mr. Doherty’s blog. )
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“I do not accept a logic chain that precludes reasonable treatment efforts particularly early education / intervention from being defined as anything but unacceptance, of one’s child and autism in general.”
Whose logic chain would this be? The straw man’s?
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Brett asks “I’m also not exactly sure how the question of human rights for autistics made it into the conversation…”
I won’t count how many times “neurodiversity” is mentioned (never mind that it’s in the title) in Brett’s post–the one I was responding to. But Brett states right at the top that this post, written by Ms Wachs, is about how he has “finally found the right words to express [his] feelings, as a parent, about autism and neurodiversity.”
Neurodiversity is part of the general idea that disabled people (including, but not at all limited to, autistics) should have human rights. That’s how “the question of human rights for autistics made it into the conversation.” That’s why I wrote:
“Neurodiversity is part of the general idea that disabled people should have human rights. Which part of this is Brett and Ms Wachs opposing?”
I’m not sure why this is unclear.
Mr Doherty does not allow many people, self included, to post polite, pertinent, sourced, etc., comments on his blog (I have only succeeded once, and gave up long ago). This might explain why people are commenting here. Also, Brett has stated that Ms Wachs’ views represent his own.
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Michelle,
Are you saying that if I don’t agree completely with the ideas of neurodiversity that I am basically saying I don’t believe disabled people have human rights?
Your comments about Mr. Doherty’s blog explains why there isn’t more there from Hub members. Thanks.
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Neurodiversity is part of the general idea that disabled people (in this case, people whose neurology is atypical, including but not at all limited to autistics; see, e.g., People First groups and the Canadian Down Syndrome Society) should have human rights. Neurodiversity isn’t anything else.
Neurodiversity isn’t, e.g., a demand that autistics be denied education, opportunities, independence, etc. Assuming this — as was done in what you chose to post as “the right words” to express your feelings about “autism and neurodiversity” — is like assuming that Canada’s human rights laws are actually a demand that, e.g., females should be denied education, opportunities, independence, etc.
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To: Michelle Dawson
From: Arthur Golden
1. First of all, I would to state that:
a. I accept your sincerity and that you do not have any malicious intent in your writing
b. I appreciate your public articles, including “The Misbehaviour of the Behaviourists”
c. I appreciate the information you provide in your postings to your QuickTopic discussion board.
2. However,
a. I disagree with your negative statements about Brett Miller on the subject of human rights of autistics
b. I disagree with many of your negative statements about various individuals, including myself, on the subjects of human rights of autistics and ethics.
3. Although I accept that Science is a useful tool, I disagree with the position that Science provides a complete explanation of all human behavior.
4. I have tried to have a discussion with you about your positions but you refuse to do so.
5. Although I accept your sincerity and that you do not have any malicious intent in your writing, since you are not careful to consider all information, I question you on the subjects of human rights of autistics and ethics.
6. Based on the information I have about Brett Miller, I see no reason to question him on the subjects of human rights of autistics and ethics. Time permitting, I look forward to continuing to read his blog about autism, especially his plan to further discuss the writings of Jim Sinclair.
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