Neurological diversity

28 May

It is a common tactic of some people who believe that autism should be cured at all costs to state that ‘the neurodiverse’ are a small minority of adults with Aspergers Syndrome, intent on preserving themselves at the expense of their ‘low functioning’ cousins.

Take a recent post from Harold Doherty railing against Andrew Solomon’s piece in New York Magazine:

The Alleged Autism Rights Movement isn’t much help for the severely autistic, the truly severely autistic….. like my son Conor who wondered (sic) across a busy main street oblivious to the dangers of traffic; or those like the 10 year old severely autistic boy in North Carolina who was struck by a train and killed Saturday half an hour after police received a report he was missing from his home. [Or] like the 50 year old autistic woman who could not communicate to tell the world she was being abused by staff in the residential care facility in which she lives in Long Island…

The sad fact is that, if Harold Doherty would allow himself to see it, no-one from ‘neurodiversity’ is suggesting that people like his son, the 10 year old boy he describes or the 50 year old woman he describes, should not be helped to the fullest possible extent. The trouble is, that Harold (and people who hold similar views) are so caught up in what they _think_ they never actually _see_ . The other fact is that the basic tenet of neurodiversity as _I_ understand the term is that people like Conor Doherty deserve respect. The whole ‘cure’ thing is a fairly trivial side issue. Respect is what comes first.

There is no cure for autism. Does this mean then, that we should not fight for the rights of autistic people of _all_ ages, abilities and expressions? That because they are not neurotypical they do not have rights? or deserve respect?

_That_ is what (to me and I think to very many people) neurodiversity is about. Take Alex Barton – the five year old voted out of his class. That is a _lack_ of respect. There is absolutely no justification for that teacher to behave in that way toward a five year old child. Neurodiversity says ‘this little autistic boy deserves to be treated as if he were the same as anyone else in terms of his right to belong’. I fear that some people who call themselves autism advocates think the problem is easily remedied by curing Alex Barton’s autism (hypothetically of course). I think that that entirely misses the point. People used to look for cures for homosexuality – that was wrong too. The _person who is autistic_ deserves as much of a chance to be judged for who they are with their own set of unique abilities, shortcomings and character as the person who is not.

Does this mean we should ‘leave the autistic child as he/she is’? Of course not! That is the largest of red herrings. If someone cannot communicate, you help them communicate. If someone cannot use the toilet, you help them to learn.

And then, when they have reached the upper limit of the potential for learning on each of these subjects, you accept that that is who they are. For some, that might mean they can now speak. For some it might mean they can barely use one Makaton sign. The _amount_ they have learnt is not the measure of how much respect they deserve. They deserve respect regardless. So we must all work to make the environment safer for young autistic children. We must all work harder to make autistic adults living arrangements safe. These are basic human rights.

It should also be noted that, far from being an autism related term, neurodiversity touches on a whole range of things. Of course, they’re not all called ‘neurodiversity’ but well….

Are voices a symptom of illness or a variety of human experience?

Research has shown that there are many people who hear voices, some of whom cope with their voices well without psychiatric intervention, it has also been found that there are many people who hear voices who can cope with their voices and regard them as a positive part of their lives. Neither is it the case that voices have always been regarded as a negative experience.

Throughout history and even today there are people who hear voices who find their voices inspirational and comforting. These are facts that on the face of it are hard to square with the extremely negative way that the experience is regarded by psychiatry. The researchers, practitioners and involved voice hearers believe it is mistaken to regard voice hearing as part of a psychopathic disease syndrome. Rather, they consider it to be more akin to a variation in human experience – if you like, a faculty or differentiation – something like homosexuality, that it is definitely not open to cure.

Thats taken from a page on Hearing Voices from the Mental Health Foundation. I would suggest that you go read that entire page. Like neurodiversity, some members of the hearing voices community acknowledge that their condition (or the condition of a loved one) can be disabling and distressing. However, they all realise that their can be a unique benefit and comfort in knowing who they are. They believe that who they are can be best expressed as a variation in human experience.

A little closer to home (for me anyway), there is something called Mad Pride which is a movement again neurodiversity in all but name. Its a loose conglomeration of self advocates who are (or have been) diagnosed with mental illness:

About 5.7 million Americans over 18 have bipolar disorder, which is classified as a mood disorder, according to the National Institute of Mental Health. Another 2.4 million have schizophrenia, which is considered a thought disorder. The small slice of this disparate population who have chosen to share their experiences with the public liken their efforts to those of the gay-rights and similar movements of a generation ago.

Just as gay-rights activists reclaimed the word queer as a badge of honor rather than a slur, these advocates proudly call themselves mad; they say their conditions do not preclude them from productive lives.

The people in all these movements are autistic, manic depressives, schizophrenics, tourettes and many more. None of us deny the bad things that being the way we are can bring. But we do not believe that the fact that we are the way we are means that we are second-class or fodder for nothing more than quack therapies and misplaced pity.

All these peoples – and many more – are the neurologically diverse. The Neurodiverse. Belonging to neither nation, nor politics but simply belonging to the simple idea that everyone is _not_ equal but everyone can advocate best for themselves if supported and respected:

“Broken down it means ‘speaking for yourself’, ‘communicating in other ways’, but it’s personal. For me it means that I can speak for myself. It means I’ve got a voice and even without a voice I can communicate in other ways. It means yes and no- most important- ‘No, I don’t want tea, I want coffee, I don’t want sugar’- all the things we take for granted. It means people must listen to me, I can take a risk, I can have a relationship, that can be hard. I can think for myself, I can go to the shop with support and if I need help, people can help me….

Jackie Downer, Down’s Syndrome Self Advocate.

24 Responses to “Neurological diversity”

  1. culvercitycynic May 28, 2008 at 01:47 #

    Thank you very, very much for this Kev.

  2. jon Mitchell May 28, 2008 at 05:31 #

    Again, Kev, you say, that people should be helped without being cured? If you have any suggestions on how these people can be helped, I would sure like to hear them. Neurodiversity seems to have all these easy quick fix solutions to autism, yet they are not divulging them. I am still wondering what they are. If you had something that would help with all of these things I am sure that Harold Doherty and other parents would jump at them for their kids.

    Also, the question no one from neurodiversity seems to want to ask, if the kids were helped and then no longer had these problems, why wouldn’t they be cured? Neurodiversity proponents, still are trying to have it both ways.

  3. Joseph May 28, 2008 at 06:28 #

    Jon, what is your take on Down’s, and how do you feel about the way the majority of Down organizations describe the condition?

    Is their entire evolution in views irrelevant? Are social changes irrelevant to people with Down’s?

  4. Ms. Clark May 28, 2008 at 06:36 #

    My ASD adult offspring gets help and does not want to be cured. The help my kid gets is individual. I run interference so that xe doesn’t have to deal with some tasks that are overwhelming (like maybe following up with a doctor’s assistant to find out what the results of a blood test were, or to see if a prescription has been refilled). My kid now approaching age 30 can do a lot more of these kinds of tasks than xe used to be able to. I do a lot of the bill paying and general life support that would be difficult for that particular ASD person to juggle alone. I make doctor’s appointments and am the principle “taxi” since my kid can’t drive.

    If I weren’t around, my kid would have a case worker and support helpers, maybe not 24 hours a day, but I’d guess for 8 hours a day, at least.

    What my kid needs is not what I need (and struggle without) and what we need is not what other people need. You must know this, so your question is totally glib, in my opinion.

    One thing that is not being provided at an adequate level, as far as I can tell, today is effective communication devices for people who may really benefit from them (say someone like Sue Rubin who was thought to be retarded before she was given a way to communicate via keyboard.)

    A big thing that is lacking is respect for autistic people. Who is going to hire an autistic person if all they hear about autistics is that they smear feces and bite others and are emotionally void and totally without human feeling? I wouldn’t be anxious to hire someone like that. But if on the other hand I hear all the good things about autism and autistics and was encouraged to open up my mind to accept different kinds of behavior, if someone explained to me that flapping doesn’t equal, “this person is stupid,” if someone explained to me that avoiding eye contact does not always mean guilt, if someone explained to me that a person who suddenly yelps or sniffs their hand could still be a very good employee… Then I might be inclined to hire the person who is flapping and avoiding eye contact.

    Those ideas of widening out the spectrum of acceptable behavior are NOT coming from Big Pharma, they are not coming from Big Behaviorism and they are not coming from Big Autism at all in the US. They are not coming from quack doctors and parents who promote things like implanting fecal material from mother to son or vinegar and garlic IV infusions.

    Those ideas are coming from neurodiversity advocates and autistic adult self advocates, and from some of the middle of the road, average people who aren’t shoving their faces into the media but who want their kid to find a job some day if possible and realize that demonizing their own kid or describing them as poisoned or as genetic throwbacks is probably not going to aid in that goal.

  5. Kev May 28, 2008 at 07:11 #

    Again, Kev, you say, that people should be helped without being cured?

    No, I say that people should be helped regardless of the idea of cure. I am not suggesting that there is a line that should not be crossed, I am saying that people who genuinely need help should recieve it.

    If you have any suggestions on how these people can be helped, I would sure like to hear them.

    I’m talking about the good scientifically valid therapies already in existence. I’m also talking about trying to develop new ones.

    Neurodiversity seems to have all these easy quick fix solutions to autism, yet they are not divulging them.

    Whatever gave you that idea?

    Also, the question no one from neurodiversity seems to want to ask, if the kids were helped and then no longer had these problems, why wouldn’t they be cured? Neurodiversity proponents, still are trying to have it both ways

    I have no idea what you’re trying to say here. Are you asking that if as a result of a treatment or therapy someone become somehow not autistic, would that be a cure? I guess so, but I’m still not sure what the point of your question was.

  6. Ivar T May 28, 2008 at 07:32 #

    I believe it is Jon Mitchell who sees the problems associated with being autistic as autism itself.

  7. Ivar T May 28, 2008 at 07:36 #

    To me neurodiversity is about autism not being either good or bad, but something neutral that you just have to live with, accept and make the best of.

  8. Harold L Doherty May 28, 2008 at 11:33 #

    “Take a recent post from Harold Doherty railing against Andrew Solomon’s piece in New York Magazine:”I was the one who was railing? Hypocrisy doesn’t look good on you Kev.

    I made no comments about the numbers of persons with Aspergers or other high functioning people with PDD disorders. What I consistently say is that there are big differences between the realities faced by eloquent high functioning “autism rights” advocates like those featured in the NY Mag article, Alex Plank,Michelle Dawson, Amanda Baggs and ohers with all their intellectual and communication gifts and those persons with Autistic Disorders who do NOT have such gifts.

    The challenges, goals and agendas of the alleged Autism Rights activists have little in common with the challenges faced by people like my son whose life realities are vastly different or the other persons mentioned in the paragraph you quoted.

    The truth is that the alleged Autism Rights movement obscures, and even denies, the life situations of persons with different challenges including many who also have serious intellectual and communicaton deficits, lack understanding of real world dangers, injure themselves, and will not live independent lives. The alleged Autism Rghts activists some of whom do not even have Autistic Disorder, but different disorders such as Aspergers, actively suppress the truth about the more serious challenges faced by persons with Autistic Disorders with the serious deficits I listed.

    The truth is that the alleged Autism Rights movement is actively involved in discouraging treatment, cure and effective education of persons with actual and serious Autistic Disorder. In doing so they are engaged in suppressing the rights of persons with Autistic Disorder like my son, like the lady in the residential home, like the boy who died on the train tracks, like the many autistic persons who wander from their home every day, like the many children who require expert tertiary level care for their self injurious behavior including brain injury from head banging, self inflicted bite wounds and self starvation because of sensitivity to numerous food tastes and textures.

    I have been actively involved where I live in trying to get effective treatment and care for autistic children and adults. Some of that effort was to ensure the continuation of tertiary care services for autistic children who injured themselves to the point of endangering their lives. Having seen these autism realities I am not impressed by ideologues who say that autism is a culture to be celebrated.

  9. Kev May 28, 2008 at 12:13 #

    I was the one who was railing? Hypocrisy doesn’t look good on you Kev.

    Well, yes, you were. No one else wrote that blog post Harold.

    The challenges, goals and agendas of the alleged Autism Rights activists have little in common with the challenges faced by people like my son whose life realities are vastly different or the other persons mentioned in the paragraph you quoted.

    Well, I disagree. As far as I can see, the main goal and/or agenda of the neurodiversity movement is (as I wrote here) respect for autistic people, regardless of ability. Is that something you disagree with?

    The truth is that the alleged Autism Rights movement obscures, and even denies, the life situations of persons with different challenges including many who also have serious intellectual and communicaton deficits, lack understanding of real world dangers, injure themselves, and will not live independent lives. The alleged Autism Rghts activists some of whom do not even have Autistic Disorder, but different disorders such as Aspergers, actively suppress the truth about the more serious challenges faced by persons with Autistic Disorders with the serious deficits I listed.

    Would you care to provide me with an example of this obscuring and denial of the life situations of others?

    The truth is that the alleged Autism Rights movement is actively involved in discouraging treatment, cure and effective education of persons with actual and serious Autistic Disorder.

    Again, would you care to provide examples of this? I personally treat and use effective education with my autistic child. I consider myself part of the movement you describe. That in itself would seem to contradict the above statement.

    I have been actively involved where I live in trying to get effective treatment and care for autistic children and adults. Some of that effort was to ensure the continuation of tertiary care services for autistic children who injured themselves to the point of endangering their lives. Having seen these autism realities I am not impressed by ideologues who say that autism is a culture to be celebrated.

    I have also been involved in similar local initiatives and as you also know, my autistic child is – as you define it – low functioning. I would also not be impressed by people who *solely* claim that autism is a culture to be celebrated. However, all the neurodiversity advocates I know acknowledge (as I said above) the fact that autism is both a disability and a difference.

    The celebration is an extension of respect. Why should autistic people not be happy with who they are? And if they are not who’s responsibility is that? Is it the fault of autism that Alex Barton was ‘voted out’ of his class? Or was it the fault of the society he was in?

  10. jypsy May 28, 2008 at 16:04 #

    “The truth is that the alleged Autism Rights movement obscures, and even denies, the life situations of persons with different challenges including many who also have serious intellectual and communicaton deficits, lack understanding of real world dangers, injure themselves, and will not live independent lives.”

    Yeah… that’s why Alex and I did all we did to bring Dennis Debbaudt to PEI. Your “truth” is an outright lie.

  11. Joseph May 28, 2008 at 16:10 #

    Same sort of question for Harold. Do you feel that the vast majority of Down Syndrome organizations are suppressing the truth about the challenges of people with Down’s? Are they actively involved in discouraging treatment, research, and so on?

    I want to try to understand the perceived differences. Because, you see, their discourse sounds familiar. For example:

    “However, it is only through the collective efforts of parents, professionals, and concerned citizens that acceptance is becoming even more widespread. It is the mission of the National Down Syndrome Society to ensure that all people with Down syndrome are provided the opportunity to achieve their full potential in all aspects of their lives.” (National Down Syndrome Society)

    “It is important to remember that while children and adults with Down syndrome experience developmental delays, they also have many talents and gifts and should be given the opportunity and encouragement to develop them.” (National Association for Down Syndrome)

    The Down Syndrome Association of the UK has a number of themes in its main page, including “Challenging discrimination” and “Creating understanding.”

    “In the past it was believed that there were many things that people with Down’s syndrome could not do when in fact they had never been given the opportunity to try. Today these opportunities have never been greater with many people with Down’s syndrome leading rich and varied lives.” (DSA UK)

    “This has resulted in the White Paper – “Valuing People: A New Strategy for learning Disabilities for the 21st Century”, in which the key principles – legal and civil rights, independence, choice, inclusion – are to be reflected in every aspect of the lives of children and adults with learning disabilities.” (DSA UK)

    “It is hoped that services will continue to improve for people with Down’s syndrome and that our society will become fully inclusive, embracing diversity rather than condemning many people with Down’s syndrome and their families to a life of social exclusion.” (DSA UK)

    “Down’s syndrome is not a disease and therefore people with Down’s syndrome do not suffer nor are they victims of their condition.” (DSA UK)

    “People with Down syndrome are individuals and vary in their abilities and achievements. They are contributing members of society.” (DSA New Zeland)

    I could go on.

  12. Dedj May 28, 2008 at 17:11 #

    I’m rather curious about all this.

    Despite being interested in autism for the last 8 years or so, despite having an ASC myself, despite working with an autism service covering two major UK town (and surrounding area), despite being a member of two seperate autism organisations, despite studying alongside or under professionals and others who work with children and adults with autism, and despite having a social circle which includes people who are qualified in autism and it’s treatment – I have yet to hear of a single ND proponent who believes that people with autism should be left untreated whilst we sit around with our thumbs up our bum.

    If the claims about ND proponents are true, I should be very well placed to routinely run into such people, yet I have not yet ever came across such a person.

    Yet I routinely meet, hear about and read of parents who hold the view that mainstream therapies should be avoided, that qualified seasoned professionals are not competant, and that unproven therapies that can’t even work in theory should be held to be valid above and beyond therapies that feature in the proffesional literature time and time again.

    I think ND-opponents confuse opposition to their way of treatment as opposition to treatment full stop – yet, by their own logic they must be severly anti-cure as they deny the validity of a hell of a lot more therapies and science behind mainstream autism treatment.

    Anyone who can hold onto such a massive cognitive dissonance and turn around and accuse others of the same thing is not someone I’d want giving me advice on anything, much less something as complex as autism.

  13. Oldfart May 28, 2008 at 19:40 #

    In many ways this discussion reminds me of what I call the “deaf culture syndrome.” Apparently there is a whole sub-culture of deaf people out there almost totally invisible to the rest of us since they speak a different language that is silent. When cochlear implants became a reality for some deaf people, some of the members of this culture went on a rant that the “cure” would destroy their culture. Searching on “cochlear implants ethics” gets 322,000 hits even today. The likelihood of a cure for autism is very low but it is impossible to predict future discoveries. Be careful you do not create a similar “ASD culture.”

  14. jon Mitchell May 28, 2008 at 19:54 #

    Joseph, from little i hear about the attitudes of down’s syndrome societies from you and michelle dawson, it sounds to me like they are engaging in the same reaction formation and denial (if you have studied freudian psychology at all you are familiar with these terms) that the neurodiversity proponents who have autism are practicing.

    You invite people to tell you what is wrong with neurodiversity. I accept your invitation and aside from what i have written on my web page and blog and other places that you have read, I can so the main thing that is wrong with it:

    For persons with autism, down’s syndrome, etc. it just provides an escape valve to deny that there is really a problem so they can make themselves feel better.

  15. jon Mitchell May 28, 2008 at 19:59 #

    Kev, you are still not being specific? What are those scientifically valid therapies? Have they helped autistic children? What new ones are being developed. Should these therapies only provide partial relief to autistics or full relief? If partial what is wrong with full relief? If full relief, then how is this any diffrent than a cure.

    Are there any valid therapies now? I don’t believe there are. Certainly there is no therapy that will replace a cure if one is available. Without a cure there is no way that a person on the spectrum can be restored to a normal (or typical) state of health. Neurodiversity proponents, including yourself, don’t want to seem to acknowledge there is a problem.

  16. Ms. Clark May 28, 2008 at 20:16 #

    If there was “cure” for autism there is no way it could make a now living child “normal” because the child or adult will have a history of having been autistic.

    It would be like growing up in China until age 18 and then getting “cured” of being Chinese, so that the person had all the external features of being, say, Swedish. So that Chinese person who now can pass for Swedish (is a tall, blue eyed blonde speaks Swedish with a Swedish accent).

    Now place this neo-Swedish person in a community of Swedish people. Does she fit in? Does she “feel Normal” now? Really? How is that? Does she want to eat Swedish food now? How is that? Does she miss listening to the er hu? Does she crave “thousand year old eggs”? If not, why not? Does she wish she could go back to China and fit in as a Chinese person? If not why not? Can she still speak Chinese? Was that wiped out? Does that color what she thinks about when she thinks in Swedish?

    Do you think it’s possible to re-create a false history in this person’s mind wherein she grew up in Stockholm? How would that work?

    Even if you could “cure” a 6 month old, would that cure actually give the baby a happy life? How would you know that he’d be happy as one of these kids who was switched off of one trajectory and on to another. How would you know that he’d be happier as an autistic. Not all autistic people want to be cured. Tito Mukhopadhyay does not and he’s far more disabled than you are Jonathan. Same for DJ Savarese, same for others I can name but are not famous people.

  17. Joseph May 28, 2008 at 20:26 #

    Much of Freudian psychology is unfalsifiable, but that’s neither here nor there.

    The thing, Jon, is that the approach of the Down Syndrome societies has been quite successful. I’m sure that their views were not arrived at in the blink of an eye. They probably struggled to get where they are. Those organizations are much more mature than autism organizations.

    I think it’s nearly inevitable that autism organizations will move in that direction as well, even if it takes 20 or 50 years. In the future, an effort such as TAAP will be representative of big autism organizations; that’s my prediction anyway.

  18. jon Mitchell May 28, 2008 at 22:14 #

    “In the future, an effort such as TAAP will be representative of big autism organizations; that’s my prediction anyway.”

    Yes, and someday we will discover that columbus was wrong, the earth was flat all along.

  19. Kev May 28, 2008 at 22:36 #

    Kev, you are still not being specific? What are those scientifically valid therapies? Have they helped autistic children? What new ones are being developed. Should these therapies only provide partial relief to autistics or full relief? If partial what is wrong with full relief? If full relief, then how is this any diffrent than a cure.

    First of Jon – please don’t use my child’s name or gender. Its not your fault but I am not using it any more.

    OK, so I’m really not sure what you want me to say here. Scientifically valid therapies to me include things like PECS, Makaton, occupational therapy, a decent education. I tend to look at the research discussed here.

    Are there any valid therapies now? I don’t believe there are. Certainly there is no therapy that will replace a cure if one is available. Without a cure there is no way that a person on the spectrum can be restored to a normal (or typical) state of health. Neurodiversity proponents, including yourself, don’t want to seem to acknowledge there is a problem.

    Jon I’m not being difficult here but I really don’t know what you’re talking about or what you want me to say. Of course there are no therapies that will offer a cure. If there were they’d be called a cure.

    What is is about the reality we have now (that of scientifically valid therapies that help with distinct and definite issues but no overall cure) do you feel I (or neurodiversity in general) am misleading people about?

  20. Kev May 28, 2008 at 22:38 #

    Jon – here’s another good site that evaluates specific interventions.

  21. Harold L Doherty June 10, 2008 at 17:40 #

    jypsy I am disappointed by your allegation that I lied. I expect that from some people on the world wide web but I expect more courtesy from a fellow maritimer. You disagree with my assessment of your ideological movement but that does not mean that I am lying.

    Harold

  22. Harold L Doherty June 10, 2008 at 17:52 #

    Kev the parents who described the harsh realities they faced arising from their children’s autism disorder were vilified by the Neurodiversity/Autism Rights movements.

    You said:

    “I would also not be impressed by people who solely claim that autism is a culture to be celebrated. However, all the neurodiversity advocates I know acknowledge (as I said above) the fact that autism is both a disability and a difference.”

    You dodged the issue(s). The high functioning autistics and Aspergers persons of the ARM do not share the same realities as my son. They have different levels of understanding the world and vastly different levels of communication.

    A person attending college, appearing all over the mass media and internet articulating their ideology, even being able to engage in personal, intimate relationships does not face the same realities as low functioning persons with Autistic Disorder. I don’t know why you can’t acknowledge that simple fact.

    Given their vastly different challenges they have no right to speak for my son and others of his situation. NONE. And they certainly have no right to say that my son, or that I, as my son’s legal spokesperson, and the one who actually, knows, cares for him and love him should not seek a cure for him or effective evidence based interventions that help him such as ABA.

    If you do not think that the ARM people advocate an anti-cure, anti-treatment position on behalf of all autistic people then you are fooling yourself.

    PS go ahead and demonize (railing etc.) me if it makes you feel better.

  23. Ivar T June 10, 2008 at 18:23 #

    Autistic “HF” adults have had great difficulties in getting any publicity compared to parents even when they might have needed just as much.

    It’s maybe right to give more support for parents as they often have more responsibility, but after autistic adults had been neglected of pretty much any focus for decades it’s understandable that the language first used on their first web communities was rather harsh, sometimes directed, and ofcourse not rightfully so, toward parents.

    It’s nothing to deny that parents have received alot more sympathy for their situation even when autistic adults met the worst kinds of discrimination.

    That Ari Ne’eman is able to speak up for the interests of autistic adults is a great breakthrough, and I don’t see why he should shut up just because some parents of severely disabled autistics disagree with him.

  24. jypsy June 11, 2008 at 14:51 #

    Mr. Doherty,
    You didn’t say “my assessment is….”, you said “The truth is….”

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