A Neurodiversity FAQ

17 May

Following Ari Ne’eman’s interview in Newsweek being published yesterday, a storm of blog posts about him, autism and neurodiversity in general have appeared. There is a series of comments on the Newsweek forum featuring that bastion of idiocy and bigotry, John Best and sadly, even someone I respect a great deal, Jonathan Mitchell, has stooped to equating autism with sexual abusers. With that in mind, I want to re-post (with slight edits) an old post of mine about what I see neurodiversity as.

Proviso: I am not a spokesperson for any other person and/or group. The term ‘neurodiversity’ did not originate with me. What follows is my personal opinion and what I believe the concept of neurodiversity represents. I believe I voice opinions common to many in the neurodiversity group but I may well be wrong. Sometimes I refer to ‘we’ and sometimes ‘I’. When I refer to ‘we’ I think I am repeating the consensus of neurodiversitiy opinion but bear in mind I could well be wrong.

*1) Neurodiversity proponents are anti-parent.*

False. I’m a parent. I’m parent to 3 kids of whom two are NT and one is autistic. I’ve never felt anyone in the ‘neurodiversity crowd’ is anti me. Kathleen Seidel is a parent. Camille Clark is a parent. Anne Bevington is a parent.

*2) AutAdvo makes up the entire population of Neurodiversity proponents.*

False. There are literally hundreds of websites with thousands of participating autistics of all ‘levels’. The vast majority advocate acceptance. There are also a very large number of NT parents who advocate Neurodiversity. The desire to ‘cure at all costs’ autism is heavily weighted towards North America.

*3) Neurodiversity proponents say we should not treat our kids.*

False. This is one of the biggest points of contention. The issue is one of autism (the main point) versus comorbidities (side points). See the WikiPedia definition of comorbidity. What are some comorbidities? Gastric problems, ADHD, ADD, Depression, migrane. Why would you imagine we don’t want you to treat these things? These things are not autism. They are comorbidities of autism. They cannot be used to illustrate or define autism as they are not common to every autistic.

Don’t take my word for it. Go ask the Doctor who diagnosed your child.

We see your error as the failure to differentiate between the comorbidity and the autism. To us, one is treatable. The other is not. We do not fight for your child’s right to have gastric issues.

You see our error as trying to prevent your child being treated. My own daughter receives PECS and Speech Therapy. I would not stand in any parents way who wanted to alleviate the suffering of their kids. Having terrible constipation is suffering. Having a different kind of thought process is not.

*4) Neurodiversity proponents who are autistic are different than my child.*

True. They are mostly adults. Your kids are kids. However I don’t think thats your point. You believe that all autistic Neurodiversity proponents are ‘high functioning’. This is untrue, both now and historically. The facts are that for a lot of the autistic adults in the Neurodiversity movement their diagnosis was ‘low functioning’ when they were kids. But people grow and progress. Autism doesn’t stop progress, it just sets a different timetable for it. These adults are living breathing proof.

*5) Neurodiversity proponents are full of hate.*

I was bemused to read posts that castigated us for hate speech. Here’s an excerpt from an email I was sent in the year 2005 from someone who hid their identity. This person (who had a Bellsouth IP address) had an in-depth knowledge of Evidence of Harm and although they never said so, that they came from EoH is beyond doubt – I received this email to my Yahoo spam account immediately after making a few posts myself on EoH.

Your retard daughter should just be fucking put down – shes no autist. Little bitch.

And racism? A member of Generation Rescue (or so they claimed) told me to:

…sit next to the nearest Arab with a backpack.

Alluding, of course, to the recent London suicide bombings, this person makes racist generalisations about Arabs as well as wishing death on me.

Ex-Generation Rescue Rescue Angel John Best Jr [John has pointed out that he is now no longer a member of GR] has said that all parents of autistics who don’t chelate their kids are child abusers. Lujene Clarke of NoMercury told me that I was mentally ill because I said I had autistic relatives. My EoH debut was preceded by EoH list members referring to me as an idiot. I’ve been told I’m in the pay of Pharma companies, that I’m stupid, that I’ll go to Hell, that I’m in denial. My autistic friends have been told they are sociopathic, that they have personality disorders, that they aren’t really autistic.

*6) Neurodiversity proponents say we don’t love our kids or want whats best for them.*

False. I have no doubt that you all love your kids just as much as I love mine. I’ve not seen any neurodiversity proponent claim you hate your kids.

What we say is that we think your love for your kids has blinded you to the reality that autism itself is not a problem to overcome but a reality to share with your child. We think that in your honest desire to do the best for your child you are desperate to treat the wrong thing. We also feel that some of the things you use to treat your kids are dangerous. I’ve recently read a post by a woman enquiring about treating her child with Hydrochloric Acid. I’m on record as saying that its no-ones place to tell others what they can and cannot do to treat their kids but by that same token, I feel obliged to point the very real dangers to both your children’s health, your own bank balance and the very future of autism treatment research.

I believe the world should change for the good of my (and yours) child. I don’t believe my child should meekly inherit the mantle of ‘second class citizen’. I see it as part of my job to fight for her right to get the help she needs and at the same time, be who she is.

There are so many better fights than this one you’re on. Better education, better care, better interventions, more rights, more respect. These are the things your child (and mine) will need as they continue to grow.

We’d like you to respect your child’s autism as something unique. We’d like you to treat your child with the medical interventions for their comorbidities that they may need to progress. We’d like you to realise that your children will grow up and if they were autistic then they still will be. We’d like you to think about the strong possibility that one day the autistic adults on AutAdvo might be your kids and another set of parents who believe something passionately will be insulting them by denigrating their worth and their neurology.

You believe thiomersal did your kids harm. You may be right. I doubt it, but you may be. What it definitely didn’t do though is cause autism. This is at the heart of what makes some of us angry in respect of this issue – treat your kids if they are mercury poisoned but please stop propagating so much negative stigma with constant references to autism being mercury poisoning.

*7) So why do neurodiversity proponents say they speak for my child?*

The way I see it is like this – I and my wife know our daughter better than anyone else alive. Whilst she is a child, we speak for her in all matters. But the fact is that she is autistic. It therefore is simple common sense that other autistics have thought processes closer to those of my daughter than any NT does. They think in similar ways. Its not a case of speaking *for*, its more like having a shared reality. If one or more of my kids were gay than I would still speak for them in all matters whilst they were children but not being gay I could not share that reality in the same way as other gay people could. By virtue of their shared reality of autism our kids and autistic adults share an area of being that NT parents can never share. Like it or not, that does give them a commonality and communal existence. With that community sometimes comes a voice. Can you really say, as NT parents, that you are closer in thought process to your kids than autistic adults? When it comes to what makes autistics tick can you really say that you as NT’s know better than other autistics?

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30 Responses to “A Neurodiversity FAQ”

  1. Joseph May 17, 2009 at 21:11 #

    You believe that all autistic Neurodiversity proponents are ‘high functioning’. This is untrue, both now and historically.

    That’s actually true. Neurodiversity proponents are all high functioning in an intellectual sense (the more official definition.) But all neurodiversity detractors are also high functioning.

    Both observations are the result of an artifact, and really tell us nothing about the relationship between functioning level and political views.

  2. kyngdingxx May 18, 2009 at 00:02 #

    “But people grow and progress. Autism doesn’t stop progress, it just sets a different timetable for it. These adults are living breathing proof” Total misinformation. If anyone believed that, who would think that there are numerous autistic adults in institutions/group homes who can’t communicate enough and are still dependent? What percentage of autistics grow up to become as high functioning as those in the ND movement? Please don’t further the perception that autism is a childhood disorder.

  3. lisa450 May 18, 2009 at 02:19 #

    I’m not so sure about that. There are some neurodiversity proponents who function, intellectually, in the mentally retarded range. It really doesn’t take much to be able to say, “I like who I am and I want to stay that way.”

  4. Another Voice May 18, 2009 at 20:48 #

    There was a period of time during which I thought I belonged to and supported neurodiversity. That illusion ended around the end of May in 2007. (Those requiring context can view the achieves of this blog and others in that time frame.)

    I truly feel that every life is of equal value, that each person deserves a chance to be happy; knowing full well that some will require far more assistance than others. Needing more assistance in no way lessens a person’s dignity or value; those in our society who look down on someone with a disability need to be educated and set straight. Those simple beliefs were not enough to consider myself part of neurodiversity and that was made vividly clear in those posts.

  5. Kev May 18, 2009 at 21:01 #

    The biggest trouble with neurodiversity is that its not ‘a’ thing. Its an idea, maybe a political ideal, a sociological movement and an extension of the disability movement. But it has no fixed central idea and tenents. Harold Doherty posted and then deleted (hoping no one would see it I guess)an amusingly inept blog response today which I may go through as it does illustrate how difficult it is to define what it is.

  6. Joseph May 18, 2009 at 22:28 #

    I don’t think it makes sense for someone to disassociate themselves from ‘neurodiversity’ based on something that was said on LB/RB (and I didn’t figure out what that was.) It’s not like LB/RB controls or dictates the ideology.

  7. Prometheus May 18, 2009 at 23:16 #

    “Lisa450” states:

    “There are some neurodiversity proponents who function, intellectually, in the mentally retarded range.”

    Of course, the same can be said of some of the opponents of neurodiversity. Names come to mind, but I will spare their feelings.

    Joseph, however, is completely correct that autistic people advocating neurodiversity are not the most severely affected (i.e. they are “high functioning”). This is not to say that the more severely affected autistic people don’t want to be accepted for who they are, just that they can’t express those feelings in words or writing.

    I am at a loss to understand the opposition to neurodiversity. If there was a “cure” for autism, there might be a point in arguing whether autism was a disorder or a difference. But, since there isn’t a cure, there is no reason for people to fear that someone might be preventing their child from being “cured”.

    Right now, the argument against neurodiversity is all about making the “biomedical” parents feel more comfortable. If we would all just stop reminding them that they are using questionable “treatments” that have not been shown to be effective, they could stop being haunted by doubt.

    I, for one, intend to keep reminding the world that autistic people are people first. They should be accepted as they are, not abused because they are not what some people might want them to be.

    After all, isn’t that what we all want for ourselves?

    Prometheus

  8. Joseph May 18, 2009 at 23:49 #

    Of all the well known proponents and detractors, I can’t think of a single one who could claim to have an IQ less than 70. But I do think it is possible for an intellectually disabled person to make statements that are consistent with (or against) neurodiversity.

    Of the detractors, who is the “lowest” functioning one? Some might say Sue Rubin. Yet, her IQ is reportedly 133.

  9. Roger May 19, 2009 at 00:27 #

    One question.Do you consider behavior like eloping or self mutilation comorbidities?

  10. kyngdingxx May 19, 2009 at 00:31 #

    “This is not to say that the more severely affected autistic people don’t want to be accepted for who they are” Prometheus, being severely mentally impaired isn’t a delightful way to be. Nobody wants to be that way, as it is a misfortune.
    “But, since there isn’t a cure, there is no reason for people to fear that someone might be preventing their child from being “cured”” There won’t be a cure if neurodiversity gets its way by misleading authorities and screaming eugenics at any attempt to look for cure.

    “Right now, the argument against neurodiversity is all about making the “biomedical” parents feel more comfortable” Absolutely untrue. Lots of parents who don’t care about biomed would be disturbed at neurodiversity getting in the way. If parents stand for any genetic studies in their path of pushing for a cure, they are dubiously accused of pushing eugenics. They will not be approved of by ND in any instance where they seek to cure their children.

    “I, for one, intend to keep reminding the world that autistic people are people first. They should be accepted as they are, not abused because they are not what some people might want them to be.”
    Nobody needs you to remind anyone that they are people. What kind of way is it to treat people by thinking they should have to remain mentally impaired as if it’s a great way to be? What is someone regarded to be when attempts to help someone get basic abilities are referred to as abuse? Nobody is content with being mentally impaired. Getting someone out of that condition isn’t just something that others want for them.

    “After all, isn’t that what we all want for ourselves?”
    How would you like having to endure mental impairment and the consequent deprivation and dependence?

  11. rajensen088 May 19, 2009 at 03:16 #

    “I am at a loss to understand the opposition to neurodiversity. If there was a “cure” for autism, there might be a point in arguing whether autism was a disorder or a difference. But, since there isn’t a cure, there is no reason for people to fear that someone might be preventing their child from being “cured””.

    ‘Autism’, which no one can define, has the same success rate as adult stroke patients, still far too infrequent, implementing many of the same proven effective therapies including speech and language therapy, occupational therapy and physical therapy.

    ‘Autism’ and stroke patients both have structural abnormalities in the brain.

    Stroke patients, as a group, are viewed as being ‘socially’ impaired, have significant communication disorders often accompanied by obssesive behaviors.

    Both groups are considered to have aberrant neural connections, but neither is only a problem of different wiring. Any individual with structural abnormalities in the brain whether the damage occurs early in life before the brain is fully developed or later in life when the damage destroys part of a fully developed brain will have ‘different’ wiring.

    One of the high priorities in autism research is to develop tools for very early signs of children who may be at risk for developmental problems which can lead to very early effective and proven interventions.

    To simply claim that there is no ‘cure’ for autism
    is simply innacurate and not supported by the research.

  12. Kev May 19, 2009 at 07:43 #

    Roger, self mutilation might be the end product of say, communication difficulties. Its certainly not something that should be left unaddressed. Eloping? Not sure what you mean…

  13. Kev May 19, 2009 at 07:46 #

    Raj, there is no cure for autism. It seems recovery might be possible for a certain percentage of autistic people who meet certain conditions but to claim there is a cure is misleading and definitely not supported by any decent research.

  14. dr treg May 19, 2009 at 09:55 #

    Self-mutilation due to hypersensitivity to extreme self-pity and resentment seems to be correlated with the severity of autism which in turn is probably correlated with frontal lobe inflammatory changes/reduction in number in dendritic spines. PKU and Lesch-Nyhan syndrome also exhibit reduction in dendritic spine numbers and self-mutilation.

    Eloping is probably related to hypersensitivity to the extreme good feelings of elation/adventure/escape possibly combined with extreme bad feelings of fear of the formal proposal/ceremony.

    Time can cure a minority of autism cases.

  15. Joseph May 19, 2009 at 14:41 #

    To simply claim that there is no ‘cure’ for autism
    is simply innacurate and not supported by the research.

    The opposite is actually true. To claim there’s a ‘cure’ for autism is simply inaccurate and not supported by the research. Show me a replicated double-blind study that demonstrates something brings about ‘cure’ more often than placebo.

  16. Joseph May 19, 2009 at 15:11 #

    Self-mutilation due to hypersensitivity to extreme self-pity and resentment seems to be correlated with the severity of autism

    @dr treg: Do you have evidence of this, or is it only speculation?

    Aggression and self-injury seem to be associated with social isolation.

    However, if what you say is true, that argues in favor of neurodiversity. Anecdotally you will find that some autistics used to self-injure before they found self-acceptance.

  17. dr treg May 19, 2009 at 16:49 #

    It seems in most animal studies that when the dendritic spines in the frontal lobes are shorter and sparser with lower firing rates, behaviour as a consequence of excessive thoughts and feelings related to fear, resentment and self-pity develop. Isolation due to self-pity, fear and resentment often results. Self-mutilation seems to be more prevalent in severe autism.
    Acceptance is on the opposite end of the acceptance-resentment scale and perhaps represents some degree of regrowth of frontal lobe dendritic spines and increased firing rates.

  18. Joseph May 19, 2009 at 18:50 #

    How do they measure self-pity in animal models?

  19. dr treg May 19, 2009 at 21:34 #

    Self-pity manifests as social isolation e.g. in the mice injected with the maternal fetal brain antibodies study
    http://www.physorg.com/news159207023.html
    Many patients with extreme self-pity i.e. “clinical depression” also tend to isolate. As they become more grateful their connection to the surrounding environment improves.

  20. Another Voice May 20, 2009 at 16:20 #

    @kyngdingxx, I agree with your comments and rebuttals expressed here. The one exception is that I feel there is a continuing need to remind the world about the dignity of all people, including autistics.

  21. Clay May 20, 2009 at 20:17 #

    @kyngdingxx – You’re not fooling me, “Billy Cresp”, aka “Lurker”, aka “JosephS”, aka “Len Larvis”. Your main “mental impairment” is the modern equivalent of those who used to make prank phone calls. Begone!

  22. Prometheus May 20, 2009 at 20:48 #

    Kingdingxx states:

    “Prometheus, being severely mentally impaired isn’t a delightful way to be. Nobody wants to be that way, as it is a misfortune.”

    This was in response to my statement:

    “This is not to say that the more severely affected autistic people don’t want to be accepted for who they are.”

    Does anybody else see this as a non sequitur? What does wanting to be a particular way have to do with wanting to be accepted as a human being – a person – rather than as a disability or a disease? Does treating a disabled person as an object or as a social problem help feel better about their situation?

    Maybe this is true in the alternative universe Kngdingxx lives in, but not where I live.

    RAJensen states:

    “Autism and stroke patients both have structural abnormalities in the brain.”

    Oh? Name the structure affected in autism.

    I’m sure that researchers in autism would be delighted to discover that there is a consistent structural abnormality they could use to diagnose autism.

    RAJensen continues:

    “Stroke patients, as a group, are viewed as being ‘socially’ impaired, have significant communication disorders often accompanied by obssesive behaviors.”

    I’m not sure that you’re right about that, RA. Some stroke victims are socially impaired (most often due to communication difficulty), but I don’t believe that is a “group” characteristic.

    Dr. Treg comments about how “self-pity” is determined in animal models:

    “Self-pity manifests as social isolation e.g. in the mice injected with the maternal fetal brain antibodies study.”

    This is the problem with using animal models for behavioral disorders – it’s so terribly hard to ask animals why they are behaving the way they do.

    If you think that a particular treatment is going to cause a certain emotional effect (e.g. “self pity”), it is very tempting to interpret almost any ambiguous behavior (e.g. “social isolation”) as what you expect. However, social isolation in an animal (including humans) can be a manifestation of many things.

    Prometheus

  23. cpu52362 May 20, 2009 at 23:03 #

    Extra copy of chromosome 21 implicated in cancer resistance:
    http://www.msnbc.msn.com/id/30849455/

    Another reason to at least consider that neurodiversity isn’t such a bad idea.

  24. dr treg May 21, 2009 at 10:48 #

    1. Arent there persistent abnormalities of the immune system and dendritic spines of the frontal lobes in post-mortems of patients with autism?
    2. Isnt the abnormal behaviour of mice assessed in the same way abnormal thinking/feelings (psychiatry) is assessed in humans. Otherwise how did anti-depressant drugs such as Prozac get through the initial animal trials if they had no effect on “depressive behaviour” in mice.

  25. Gonzo June 18, 2009 at 12:01 #

    Can you explain why you respect Jonathan Mitchell a great deal?

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