The Neurodiversity Movement: Lack of Trust

In the midst of a not-so rationalist society the learned elite of autistic individuals, the few, have launched a reformation movement that has been conveyed primarily through autobiographical accounts and the public media. On my part I am sure that autobiographical accounts are usually biased and that science by press release is not acceptable evidence for anything. Written evidence after all needs to be communicated and the majority of autistic individuals exhibit language/communication impairments. Thus the records that we have at present on neurodiversity are the records of an elite, those that stand at the top.

One of the curious struggles within the autism community has been the misrepresentation of opinions of the pro-neurodiversity elite as being representative of those at the bottom. Neurodiversity allows you to see and experience autism through dark and hazy tinted glasses. To those participants in the neurodiversity movement the ancient Greek aphorism “Know Thyself” has been transfixed as portraying a battle against the hostility of the world and the terror or anxiety that modern medicine conveys to them. Instead of surrendering to facts they instead feel empowered to claim not normality but superiority. They escape from reality to an ephemeral world for which they boast but can’t prove. They have replaced reality with a philosophical construct moving from deductive reasoning to inductive reasoning and their horizons do not extend beyond this mental construct.

The neurodiversity movement coveys no oceanic feeling (a term popularized by Freud) or feeling of an autism world beyond them. They define themselves as defenders of autism and with the emergence of the Internet they have found virtual reverberations as to their thought process. This has been a rather violent movement whose main intent has been to overpower the thinking process of the autistic community by a few anointed ones who claim sacred knowledge of medicine by the sake of their diagnosis. The only thing they have accomplished is the creation of a split in the autism community that allows for themselves and nobody else.

Neurodiversity is a catastrophic movement for autistic individuals in general. It is reminiscent of the early religious accounts of Jewish people claiming the existence of a Messiah who would take them out of oppression, out of slavery, and restore their rightful life in society. Are they “The Last of the Just”? What gives them the right to carry the weight of the autistic community on their shoulders? By claiming that autism is not a pain or a handicap to some do they change medicine? Do they erase the existence of seizures, mood disorders, impaired attention, learning difficulties, or sensory abnormalities in a majority of autistic individuals?

Michel Foucault, a social theorist, described how Europe started monitoring itself and society with the institution of mad houses or asylums, with those who inhabited the same serving to entertain the visits of the higher classes. In the neurodiversity movement the elite few use the ones at the bottom for their own entertainment. Neurodiversity is a social club where many of its participants are non-autistic individuals claiming to be autistics. For those within the neurodiversity movement who are truly autistic, it empowers them, gives them control of chaos, because once having been considered by society as having a disease or disorder they now feel authorized to establish a contrarian course of action.

Neurodiversity is a world of excesses, ruled by black and white principles. They call for a strict interpretation of what is autism and how autistic individuals should live. Carry with you a portfolio and get a job! You have special skills- use them! Do they believe that an inability to get or hold a job infers a flaw in that person’s character? In effect, many of the points of the neurodiversity movement are made for theatrical rather than just reasons. These people who once felt marginalized by society now occupy center stage. Now they “confess” to have superior powers and instill fear on those they believe used to question or control them. In this way they appeal to the imagination, a conflagration between half-truths and reality. Rationality is set aside and meaning is attained only in their own minds.

Unfortunately the leaders of neurodiversity movement have been given power and representation in regulating bodies thus taking away the ability to take action on pressing issues. They do so because they have popular support stemming from both movies, like Rainman, and the layman press. In this regard we are all complicit. So they take away the possibility of doing research on sensory issues and/or treatment trials (e.g., seizures) leaving the most vulnerable autistics as their target. We therefore have to take a closer look at the victims of this movement, those who literally can’t speak for themselves.

Neurodiversity is a reformation against the orthodoxy of medicine. It is an awakening caused by suffering. Some time ago they would have been labeled as eccentrics or reactionaries. However, there is a duality to the world that needs to be accepted. Taking a decision or arriving at a position is an iterative process of choice and action. Ideas and concept may evolve depending on how we communicate with others. Unfortunately autistic individuals within the neurodiversity movement have an impairment of communal sense making. The idea of continually reassessing a situation with others and the environment may take longer to process and in this regard a common mental map does not emerge or may be fragmented. There is no collective mind but rather impaired situational awareness. In a team environment decisions may be made primarily by trust and this is what is lacking in the neurodiversity movement.

For those interested in a more scientific perspective and the prologue to this blog please see: http://bit.ly/1AqaYjQ Also, a follow up blog meant as a resolution was posted at: http://bit.ly/1EO3yLL

47 responses to “The Neurodiversity Movement: Lack of Trust

  1. I agree with you 100%. In my case, there is some truth because I am really good at doing basic arithmetic really fast. Additionally, a lot of my family is involved in STEM careers, so I thought I would be like them. However, organization and planning ahead is the key to succeed in life in the end, and I don’t have much of that.

    Additionally, it is a commonly held theory that Einstein and Gates were autistic. However, we only know for sure that they have some autistic-like traits, and they also have some very non-autistic-like traits. Yet on sites like WP, I see hoards of unsatisfied people that feel trapped.

    I actually was kind of an ND elite for a while only because I thought I would be a future Einstein and make up for my past troubles, and probably angered too many other autistic people that were bad at math.

    Like

  2. Gracias , Manuel… me quedé con la hermosa sensación de no poder decir nada… es decir me obliga a pensar y reformular conceptos. Neurodiversidad , es un término que me resulta incómodo, casi un eufemismo… voy a meditar sobre esto. Excelente nota, de las mejores del blog , según mi juicio… espero la traducción al español, para una mejor comprensión… si es posible. gracias de nuevo.

    Like

  3. Wow.

    I can see the point of Neurodiversity in some instances; as a society it’s difficult to argue that we accept everyone. Further, I can see a place where being seen as ‘not disabled’ might cause problems for someone with very real difficulties fitting into a social society. The problems faced by ‘high functioning’ people with autism are real, marginal compared with someone without the powers of speech, communication, or the ability to understand abstract concepts, but real none the less.

    But. When people start throwing terms out like ‘ablelist’ I know that they inhabit a completely different place than people like my son; people for whom society is the problem, as opposed to the laws of the physical world we inhabit. The ultimate ablelist is mother nature, and no amount of social re-engineering and advocacy is going to fix the fact that it was my son’s AUTISM that compelled him to run through parking lots and the vehicles in that parking lot obeyed physics. Long winded screeds about civil rights won’t change the fact that he risked his life, for nothing more than an obsession, and DID NOT UNDERSTAND HE WAS RISKING HIS LIFE.

    This weekend my son’s eardrum burst (again). We didn’t know he had an earache because he doesn’t understand to communicate that to us, he doesn’t understand questions like ‘where does it hurt’, ‘show me where it hurts’, or ‘are you in pain?’ According to the neurodiverse, we should ‘presume competence’, yet when given dozens of opportunities to show that he understood things like, ‘are you in pain’, or ‘this is medicine, it will help you ear’, my son failed to show any comprehension, again, and again. Should I presume he knows what eardrops are, and prefers to continue having an infection? Should I presume he wanted not to be seen by a doctor? It certainly is how he acted.

    No amount of societal change will address this problem, no matter how eloquently typed, no matter how catchy the slogan. I swear I can’t understand how stating something so simply and factual somehow denigrates someone else or someone else’s child with autism, yet the indignation persists.

    The most irritating part about dealing with the neurodiverse advocate is their presumption that they know the first goddamn thing about your child; the reality is that they know exactly one thing, that he/she has an autism diagnosis.

    End rant.

    Like

    • Passionlessdrone, you make some important points. Take the idea of “presuming competence.” In society in general, I feel we should generally presume competence, just as we should presume innocence.

      But how does that apply to autistic people with whom you cannot communicate effectively?

      You cite the example of your son running through a parking lot. He seems to have no idea he’s risking his life as he dashes into traffic. Would you be right to let him go, and say “that was his choice” if a car ran him over? Few parents would subscribe to that view. Then you cite the example of his burst eardrum, which must have hurt before it broke. Is it reasonable to assume he understood your offer of medicine and willfully refused? Or does it make more sense to presume he did not know what you offered or what he needed?

      Some say the ability to make our own choices is a fundamental right, yet we concede children benefit from having guardians (parents) who oversee and guide choices for the first xx years. Some kids are abused by their guardians, but for most of us the system works. And it’s the best system we know.

      There is also long precedent for guardianship of adults who seemingly cannot decide for themselves. That has been counterbalanced by allegations of abuse and neglect. It seems that disabled adults are more likely to be abused by their guardians that children by their parents, but maybe I’m wrong about that.

      Technology is now allowing a population of people who could not speak to find voice. That’s a great thing. It’s also a demonstration that some people who were formerly presumed incompetent in in need of a guardian, are actually more competent that previously known. But does that say anything about the competence of those who still don’t communicate?

      To me, it says we still don’t know.

      When Drs Asperger and Kanner first characterized autism in the 1930s they both made a very important point: Autism affects people at all intellectual levels, and at all levels of awareness. Not all those people will be able to decide wisely for themselves given the state of their understanding and our communication. Maybe that will change tomorrow, but it’s a real issue today. How do we decide who should be presumed competent and who shouldn’t? I don’t have a better answer, but I agree that no one can presume competence another person just because they share an autism diagnosis.

      We want to presume competence, and I believe we should strive for that whenever possible, but it’s not always the right choice. It takes more than a factoid on the Internet to decide wisely.

      Like

      • Ah, nice to see you here Mr. Robison. I really liked your book.

        However, if what you say about neurodiversity is really true, then why did you say at the end of your first book that you didn’t feel the need for your electrical engineering talents anymore? Also, you admittedly got TMS treatment, so even you are basically advocating for treatment (not a cure) for autism…

        As mentioned above, it is thought that Einstein and Gates had autism, but nobody questioned their competence. They willfully defied authorities in many cases, but could still function well enough otherwise. It’s highly possible that they had autistic traits, but still could have been FAR from autistic.

        Also, I believe you opened that car business before your diagnosis. While I admire your entrepreneurship, it’s hard for even an NT to open a business, much less an Aspie, so you are at the very top in that respect. I could never do that.

        Like

  4. Do they believe that an inability to get or hold a job infers a flaw in that person’s character? The answer to that seems to be yes if you read this post http://autisticbfh.blogspot.com/2006/02/autistic-uncle-toms.html which basically labels autistics who don’t believe in neurodiversity as “uncle toms” who don’t take responsibility for the lives and do so because they believe reforms would jeopardize their disability benefits. This is a great post with a lot of good points. I found the word “neurodiversity” as offensive as retard and the n word for black people and the f word for gay people. It is a shame that the government gives these people power and allows them to control autism legislation and research and that they have any credibility in the autism world. There are so few voices that dare to counter their nonsense and as a person on the higher end of the autism spectrum who feels he suffers a great deal from this disability I am very grateful for this post and I wish more voices would counter their nonsense.

    Like

    • Unfortunately, this happened to me too a lot : (. Because I was good at computing numbers fast, I was expected to be really hard working at everything, and was called a loser for not complying.

      Like

  5. There’s a lot to think about in your essay, Manny. You’re right that some neurodiversity voices are speaking out for legislation rather than research. I sure see the need for both things, and I think either/or is bad for our community. We should be fighting hard for both.

    The neurodiversity people who speak up for rights and accommodation are following a noble path, and doing something that needs to be done. Autistic people are right to demand the same acceptance and respect as anyone else. But that’s not enough. We also have real physical and mental challenges that cry out for solution, whether through therapy or medical treatment.

    When I challenge the research we are funding, it is to stress that we need to put a greater focus on things that can help people now, and not in the next generation. Your own work would be an example of something with “now” potential. I never question the vital need to put money into remediating the ways autism causes us to suffer and be disabled.

    I sure hope that people understand that respect, acceptance, and accommodation are great things but they do not in themselves cure gastric distress, seizures, or injury from wandering. The only thing that holds promise for that is medical research.

    Sometimes I think we autistics – as a population – are hampered in our self advocacy by difficulty seeing differing points of view. We talk of autism as a spectrum, but difficulty recognizing such a spectrum and how it applies to us as individuals and how it applies to others generally is a hallmark of autism.

    There’s a lot of good in the idea of speaking up for our rights. But rights are not a substitute for effective medicine and therapy. Nor should that be expected. Both are needed.

    Like

  6. Thank you Dr Casanova. As the father of a severely autistic 19 year old son I have advocated with other parents with some success for early intervention services here in New Brunswick, Canada and for autism trained education aides and resource teachers. We have had much less success on adult autism issues. A major obstacle we continually confront in fighting for autism services is the public misrepresentation of autism disorders by Neurodiversity advocates and their followers. Your candid discussion of this topic is rare for any autism professional and is much needed.

    Like

    • Thank you for your comments. I am just arriving from work to take care of the blog. Quite surprised at the reaction. I did not approve of several comments that may have seemed disrespectful. At least this time, contrary to the blog written about Andrew Wakefield, I did not receive any death threats. Something positive I consider if one were to start a conversation. However, I would like to clarify that I can appreciate a diversity or heterogeneity within the autism spectrum. I do not consider the same as normal, especially for those who fall at the lower side of the tail end or spectrum. People that respect an autistic person’s right do so as a general principle of the dignity of life. A common respect for another person is a human value that clearly antedates Neurodiversity. This is not part of a movement but a human quality. What I would object is the misrepresentation to society that autism is normal and that,as a consequence, search for a cure or the provision of treatment is misguided. Maybe the Neurodiversity movement is different in Australia, England, or other countries but that is the dark side of Neurodiversity that has clearly cropped up in the US. I can assure everybody that there are many autistic individuals that need treatment, that their convulsions, mood disorders and sensory handicaps are real…and that there is a need for further research.

      Like

      • What is this ‘lower side’ and ‘tail end’ you speak of? Functioning levels fluctuate, sometimes in the day to day, sometimes in the long run. When I’m in my aunt’s home, and there’s lots of noise in both the background and the foreground, my functions leave, and it’s often a choice between not spilling my plate and responding quickly and well, or at all. Have you tested the spoon hypothesis’ validity yet?

        Also, I read somewhere that if a child doesn’t form language pathways early on, it’s harder to impossible later on. Maybe sensory processing issues wreak havok on one’s ability to take things in and learn them. Maybe that’s test worthy?

        I’m not anti science. I just want scientists to actually park their biases at the door, as is right.

        Like

      • Thank you from a mum in England with a boy at the more severe end of the autism spectrum, by which I mean with a severe intellectual disability on top. While I respect all people with autism, I do not find similar respect coming the other way. For instance, the people you describe from the neurodiversity movement do not respect my choice of ABA to help my boy’s (very debilitating) autism and lack of almost any life skills. In fact the “autism voice” is being used positively AGAINST my son getting the treatment he needs, as the state here in Britain says “the autism community doesn’t like ABA so we will use that as an excuse not to fund it (unless you a rich mum and can take us to law to get it)”. By definition, the autism boards and charities are choosing as their “autism voice” those autists who can in fact talk and get to the meeting independently: hence the small, capable niche are speaking for a whole that they do not represent. Often they are universalising their own very individual experience of autism, which is ironically what they accuse others of doing. I find in fact that the higher functioning autists are literally taking away my boy’s voice for a second time: he loves his ABA tutors and the list of skills he has been helped with by this evidence-based treatment includes talking, using a toilet, and learning not to drown in water. Yet the debate has been hijacked here in Great Britain by a spurious “ABA is normalising” meme. At that point, the hf viewpoint is working against their more needy brethren, and that I call selfish.

        Like

  7. Thank you for this post! You have brilliantly expressed what so many of us feel. The neurodiversity proponents, are a very vocal minority. They claim to speak for so many who are literally not able to, and they push for acceptance instead of medical treatment, or gasp, research into a possible cure. Great that they apparently don’t deal with the seizures, autoimmune problems, headaches, sensory processing disorders, speech and language delays,…..I think we need diagnostic criteria that separates these two ends of the spectrum into different diagnoses.

    Liked by 1 person

  8. I see a lot of yay sayers or neutrally toned people here. I’m trying to shoot for neutral, but it’s hard, because you’re painting a large group with differing viewpoints with a broad, very harsh brush. I’ve seen some elitists, but not that many. My friends know they’re disabled. I know I’m disabled, albeit differently. If you start with people like my friends and establish facts about them through experiment spamming, you might test what you’ve learned across the whole of the autistic demographic and discover something you otherwise wouldn’t’ve.

    Like

  9. It would be interesting to read some analysis supporting the assertions in this article. It seems that what’s being asserted here is the very kind of thing that the article is complaining about – baseless subjective non-scientific arguments, bashing, dividing people into camps and so on. It’s more of a treatise on what the author believes the enemy might be, or the enemy in his mind, perhaps?

    Like

  10. I have been watching the war of words within the Autism community for some time. I have read plenty about the elitism that Dr. Casanova talks about, but part of that is just growing pains, there are many who favor aspects of the movement who recognize the severe quality of life issues associated with individuals on the spectrum. The key here, is for reasoned debate, much like this article facilitates. For example, at the moment much of our understanding of autism is sadly obfuscated by other issues inherent with being autistic at this time and thus maladaptive to our current social paradigm. Mental illness is so common amongst us that the results are cloudy, some behaviors seen as negative actually have no moral connotations at all. In my own writing, I try to always state that there are individuals with true debilitation and will need life long care. On the other hand though, the dominant paradigm often demeans or fears us, and those of us with the native intellect to have managed to pass unnoticed for so many years often consistently fail to thrive. As autism research and advocacy moves forward, we need to do so together with a clear goal and understanding, that as John Elder Robison points out, should include voices on all sides. As more of us come out of the woodwork, many are still angry, they carry with them an understanding of self that is both freeing, yet at the same time angry and damning of the system as it exists. But there is no need for revolution, just an evolution of the public portrayal of those of us capable of thriving under the right conditions. The modern era is more stimulating than any time in human history, and reasonable accommodations can be made with a bit of understanding and knowledge. And it does not just benefit those on spectrum who are capable of reasonable self-determination, hyper-sensory issues for example are not exclusive to us, and society as a whole can benefit from a reasoned and principled conversation on the topic. We need to be able to advocate and educate in a way that applies broadly and benefits everyone, both spectrum and not. And in the current rigid social paradigm, a formulaic approach to success that does inherently create and have’s and have not’s, we could expand public understanding and create more room for more people. Not just in silicone valley as Temple Grandin stated in her Ted talks, but the internet has provided a re-invigoration of the cottage industry, opportunities for those who are overwhelmed in what people perceived as being “traditional” rolls and approaches to work life balance, but are themselves fairly new in the span of human history. Dr. Casanova is right to call foul though, but let us not turn neurodiversity itself into a bad word, for it applies to far more than just autism spectrum, people are demeaned or judged constantly based on traits observed in object reality that were never in their control, sex, gender, sexual orientation, socio-economic status, race and ethnicity. If we want to get to the truth about underlying neuropathy, then we need to also expand our understanding of what difference is an inherent disability, and what aspects of it are a result of the demeaning of difference that hijacks a healthy sense of self-identity. Like many on the spectrum, I struggle with mental illness that was imposed upon me, in my case complex PTS, this stems from a lifetime of bullying and abuse, mostly when I was very young. These things are worth fighting against, I can empathize with the kid who had human waste dumped on him during the ALS challenge for example. So great was my desire to fit in, I walked willingly into a series of horrific events one after another, and this is something the neurodiversity movement can address. There should be no shame in rocking or swaying, or needing lower stimulus environments that teach well to the difference. And there is an astounding amount of difference within the spectrum, some of which is life long disability, and some of which is something society writ large can be educated to understand and not fear or demean out of ignorance. We need to have this discussion though, and we need to avoid elitism as well that claims to speak for the whole too. So I thank you for this article, it was much needed to help push the discussion further. But, I would say this on a closing note as well, extreme forms of autism need intervention, anything that inhibits a healthy quality of life, self-identity, and ability for healthy self determination is worthy of treatment. Before we can get to that point though, we need to understand what that threshold is, and if society can adapt to allow more folks who currently cannot thrive to do so, then that is for the benefit of us all, and then we can stop trying to apply bandaid’s to artificially created symptoms, and get down to the true underlying problems. We must always be wary of culling too much in our search for a cure, the garbage genetics of today could be key to surviving under different conditions, to over reach and cull too much could be harmful as well, there is a balance to be found here, but we certainly won’t find it, if various sides draw lines in the sand and go on the offensive.

    Like

  11. It seems to me, Dr. Casanova, that you may be guilty of one of the very blames you put forth : black-and-white thinking. There are many philosophies in the neurodiversity movement, and many types of people with different capacities taking a stand. Many are disabled, and some severely. Many more are relatively abled, yet aware of the difficulties of their peers with significant disabilities and health issues, and motivated in large part by solidarity with them – this is my case. And then there are a few who claim loudly that there is no disability in autism, and feel superior from their difference. I know some of these people, and I dislike their attitude myself as counter-productive. But to bundle all advocates of neurodiversity as crazy preachers of a new world order seems to me like, well… misguided preaching. The neurodiversity movement is about human rights and dignity, which includes support and therapy for all autistics in need, whatever their needs, and precisely because needs are present. I’m sure very few in the neurodiversity movement would disagree with me. As a philosophy, how can this be bad?

    Like

  12. Manuel,

    You have made several errors in your comments.

    First of all, neurodiversity is not a political movement. It is a word that describes brain difference. Acceptance of the existence of brain difference is key to understanding Autism.

    Second, the division you speak has not been created by those you have labelled. It was created by those who insist that there is no Autism but low functioning – and use this to ignore those on the higher end of the Spectrum as relevant to their plight. This tactic ultimately harms those who are low functioning, because they don’t get the help they need and deserve. That is Autism’s biggest problem – understanding.

    Third, a cure is not needed. Improvement is what is needed – but this won’t happen as long as Autism as a whole isn’t recognised for what it is at the base. The genetic base. A cure would destroy lives via eugenics – in the same way it’s already happening with Down’s Syndrome. Autism has brought this world much good. Yes, it’s brought some parents misery – but that happens with a lack of understanding by the system that is supposed to help and doesn’t.

    Once we have it all under control, being Autistic will not be the negative it is seen as by the mainstream community. And the hate being espoused by some will be exposed for what it is – hate.

    Like

  13. Thank you for your blog Manuel and for your comments John Elder Robison. Up until now, as I have with online vaccination discussions, I have shied away from the Neurodiversity subject, but this discussion provoked an interest & I decided to do some further reading online. Coincidentally (as it wasn’t an author specific search) I came across one of your blogs John & also read that with interest. From what I can see, you both want the same thing – for people to work together to find ways for improving the quality of life for people on the spectrum.
    http://www.psychologytoday.com/blog/my-life-aspergers/200910/the-cure-autism-and-the-fight-over-it
    Thanks again for an interesting and thought provoking discussion.

    Like

  14. Dear Manuel

    Thank you for this informative post – I agree with your comments and what you are saying and I am glad that have posted this blog to give a analysis of the situation – I think what you are saying that more voices need to be heard and more diversity is needed that means looking at the whole spectrum. 🙂 Thank you.

    Kindest regards

    Paul

    Like

  15. Dear Manuel

    Thank you for this blog – it is needed and what you are saying about multiple and diverse realities of autism is needed – it is not a one size fits all condition so it is only fair that more voices should be heard and different profiles should explored I find you blog empowering you are about realities and empowerment for the whole spectrum. 🙂

    Thank You. 🙂

    Kindest regards

    Paul

    Like

  16. Pingback: Neurodiversity – Sometimes Things Have To Be Questioned | Paul Isaacs' Blog·

  17. Good things have happened because of ND input. ABA has cleaned up it’s act…reasons for behavior become more apparent, because whether mildly or severely handicapped…the developmental trajectory is eerily the same. It amazes me how much my college educated son has in common with kids who have never developed the ability to communicate via speech. They have more in common with each other than they might with the NT class of people. The ND crowd also demands accountability for abusers/murderers. The excesses of abuse towards autistics isn’t hid from their scrutiny. This is probably the singular most helpful thing they have done. I think most parents are grateful for this if they would think about it. All kinds of people out there ready to harm their children and they know it.

    On the other hand…some parents will have to make difficult decisions FOR their children for the rest of their lives. Being criticized for doing the best you are able to, using the ~only available options~ isn’t helpful. And many of those options are only pipe dreams if you don’t have the money, time, or energy to afford them. NDers could be truly helpful if they gave the parents options. Unless they are willing to physically, emotionally, educationally, or financially take on a child for the rest of their lives, their are pretty much a hindrance to parents who do the best they can.

    I see both sides. I am so grateful to ND’s who have given me hope, and made others accountable for the mistreatment of autistics. I have empathy towards parents who get a lot of criticism, but little help in making difficult decisions. If any autistic isn’t willing to take their place…they are kind of a clanging gong.
    .

    Like

    • Everybody knows about Autism Speaks. One of the major complaints held towards them is the four percent of the budget that goes towards services. If ASAN or AWN had their kind of budget, they would most likely give more to the community, and in the way of percentages, they probably already do

      Like

      • Trance, considering nearly 20% of ASAN’s budget goes to pay Ari Ne’eman’s salary alone, I really don’t think so.

        Like

      • What Jonathan says demonstrates ignorance of the vast difference between ASAN’s revenue and that of Autism Speaks. ASAN has no room for effective support even with Ari working voluntarily. Autism Speaks has, and yet they issue salaries that dwarfs Ari’s by a long way.

        Like

  18. Johnathan is right,the whole idea of neurodiversity is very offensive,And no part of neurodiversity is more offensive than the idea that no autistics want a cure or treatment for their autism.The accepted idea amoung those in the neurodiversity movement is that curing or treating the autism,would destroy your identity as a person or is akin to eugenics.This is proof,to me,that most of those who believe in neurodiversity are stuck in their own little corner of the spectrum,and cannot see beyond it.

    Equally as offensive is the idea that we should not continue research into the underlying causes of autism.That such research does mot matter,or would only be of possible importance to future generations.The research in the last 10-15 years into cerebral folate deficiency alone proves that autism research into underlyiing causes can have life changing impact for autistics,their families,and for society as a whole.Finding and treating an underlying biochemical cause for autism,like CFD,is also very cost effective for society as a whole.It can eliminate the need for specialized therapy programs,reduce or eliminate the need for children’s special education,and allow adults,such as myself,who would otherwise be very low functioning to lead an independent life.

    One of the basic principles of neurodiversity is the idea that the behaviors and the autism are separate from the medical problems or comorbid psychiatric disorders.This goes completely against everything science has told us so far.What can be diagnosed as autism is only one obvious feature of an underlying disorder,and often not the most severe feature of this disorder.

    Having both cerebral folate deficiency and mitochondrial disease gives you a unique set of experiences,and an equally unique perspective.An ability to see the big picture that no one else has.You are verbal,but otherwise low functioning,with all that goes with this.The wandering,the self abuse,the meltdowns,all the stuff neurodiversity will not admit is an integral part of autism.The whole verbal-low functioning axis seems unique to mitochondrial or metabolic autism.You have more medical issues than many,and you have a form of autism that can be treated,that allows you to experience the before and after differences of this treatment.

    In its current form,neurodiversity can never be a noble pursuit.It is based upon the very arrogant premise that the very high functioning can speak for everybody all across the spectrum.What Harold Doherty has referred to as “the royal we”.Most of those in the neurodiversity movement cannot be intellectually honest,and admit their movement only represents those at the highest functioning end of the spectrum.I don’t think most people would have a problem with such a movement were they to admit that was their goals.I believe it is time for us all of us to admit the differences across the spectrum are too great to ever be reconciled,and to move on from there.

    Like

    • I think we all need to take a step back from high emotions that label any side of the debate as somehow being “bad”. No individual has the ability to take in all the data, ignorance is part and parcel to the human condition. Neurodiversity should not be labeled as a bad word, because not all folks who consider themselves part of the movement are rigid and inflexible in their ideology. Likewise, those seeking a cure are not trying to erase us through some sort of new eugenics movement. But if we insult, demean, and attack each other we won’t get far, I will use the current state of our political system as an example of how poorly that works. The question is, how do we expand the debate? Our paths, experiences, and suffering in regards to autism are not relative, they cannot be, there are so many social, economic, and other factors beyond just the underlying issues in genetics and inherent brain wiring. It is understandable that folks become angry or defensive, when an ND activist attacks ABA with all their might, those who have found it helpful to their child feel that they are being judged, that it reflects poorly on them. And given how the average NT judges kids on spectrum, I think parents of, especially severe, autistic children are worn thin fighting multiple fronts in a war of judgment and rigid thinking. Generalizations and hurt feelings will hold this discourse back, we need to recognize them and accept them, but at the same time, we need to expand our understanding. When an ND activist makes a harsh generalization, those who are offended need to find the ability to forgive, and vice verse. Because when someone talks on a subject with intense feeling, the one thing we should all take away from it is that they do care, we all care deeply. That is something we share, but just like politics we often see very different approaches as to how to make things better, but we need to do it from a place of principled thought, we need to have discourse not a flame war against each other, we need to expand our understanding through the myriad of view points out there, empirically test and logically triangulate, and then we stand a chance of real change, both in normalizing harmless aspects of the spectrum and targeting the severe aspects that prevent a healthy sense of self-identity and ability for self-determination. Do not give into anger though, many of us on the spectrum have had our fair share of being bullied and demeaned because we think and approach things differently, just talk to us, not at us, and let us take the steps needed for the benefit of all.

      Like

  19. I didn’t get any advantages from my position on the autism spectrum. My particular disabilities have wrecked my life in gruesome ways, despite my ambition, goals, or efforts. The diversity hucksters expect me to be happy for others unearned potential/success as they celebrate, while I go through onerous experiences daily, due to the consequences of my ineptitude.

    I am convinced this anti-cure “diversity” crowd is a lot more malicious and deceitful than it may seem when considering they can’t get others’ points of view. I have watched them for many years. They are basically against compassion and push manipulative gestures of love and saccharine platitudes, while seldom caring for those who they “advocate” for. The advocates still are predominantly very-high functioning and don’t want to share their aptitudes with others. I’m glad other autistics are speaking out against their ideas.

    I think this “movement” came from a messy combination of the whole “self-esteem movement” and society’s misguided love and trust of those with high intellectual prowess. They attempt to replace the endangered self-esteems of those who lack adequacy and who have weakness, with exaggerated ideas of uniqueness and with a repudiation of standards of performance in general. They also try to extend this emotional approach of the problem to the parents of these disadvantaged individuals. But at the same time, they cite examples of the privileged, super-high functioning genius autistics, to strongly imply that any autistic could have high-abilities like they do, like they have redeemable strengths to compensate for weaknesses. These characters, who engage in psychological warfare, seem to get a very benevolent and trusting forum cause they’re so smart and successful, and are thought to have great character due to those qualities.

    Like

    • I think you make a very valid point about self-esteem. If one accepts that they are inherently flawed though that becomes a cycle for depression and mental illness on top of the very real underlying issues. For example, I am not very “high functioning”, I have plenty of intellect but I cannot thrive on my own, I still have meltdowns and engage in self-harm, these days channeled into personal possessions I treasure more than physical. I am often angry that I cannot sell myself and some of my skill sets to the dominant paradigm, and I broke myself even more trying to live the life of the NT extrovert, with very real ramifications since I am a kinetic synesthete and translate my other sensory issues into tactile responses, not a pleasant bit of fate there. But at the same time, we have no control over these things from birth, so it is understandable that for a healthy sense of self-identity that we desire to be “ok” with ourselves. The reality is, society could do better and give more opportunities for us to thrive, and science can help as well by identifying underlying issues too. I don’t work for example, I was lucky in that when I broke finally I was active duty military and have an advantage others do not in drawing a VA pension on top of SSDI. But let’s face it, just because some of my existential needs are met financially does not make me a thriving individual, but I certainly desire to endeavor in ways that are beneficial to folks…guess that is why I am here adding to the conversation as best I can. At the same time, one can argue that suffering brings wisdom, and those of us on spectrum in a myriad of ways have plenty of experience in suffering in ways others cannot readily relate too. If ND can help expand the social paradigm to understand these things that is beneficial. At the same time, it is not a panacea for all the issues faced everyday, which is why we need to articulate this, talk about it, and see clearly the pro’s and con’s, because there is value in weighing different points of view, we are able to enhance and make treatment more flexible, even when ND advocates are patently wrong, we need to learn from the errors, not descend into anger and name calling, we are all ignorant and prone to error. Everyone has value, right now that is almost always tied to being able to thrive and make a living in this paradigm, but folks who are nurturer’s or just good sounding boards for others have value too, and I think part of the ND movement is about illuminating this. I will end with the example of Tim’s place a restaurant run by a gentleman with Down’s Syndrome, he needs a great deal of support in the endeavor, but has created a place that values hugs and human contact along with food, his endeavor has value, that does not mean we should not try and address issues associated with having a trisomy genetic problem, but for those alive and well, it is worth helping them be at peace with themselves as well.

      Like

  20. Podemos hablar de autismo como una NO enfermedad… si claro, una condición, una especificidad, pero no podemos decir que el sujeto con autismo ,es un sujeto que NO padece, por el contrario debemos atender y acompañar ese padecimiento… si se me permite un ejemplo , la depresión por duelo (mal incorporada según creo como trastorno psíquico en el DSM V) , es una proceso, una condición no permanente a diferencia del autismo, pero una condición que nos convierte en sujetos padecientes ( pacientes), es que no debe ser atendido por ser un proceso “normal”? ,no procuramos aún de manera no terapéutica el consuelo de un amigo, compañero etc..? , el Sujeto con autismo padece , y esa es una obligación a la que nos debemos como personas humanas, la justificación detrás de el movimiento (y no digo concepto) neurodiversidad, nos aleja de ese compromiso humano, crea un abismo en nuestro compromiso como profesionales terapeutas, y llena un vacío que nos paraliza como investigadores.

    Like

  21. Pingback: Autism is Family: A Guest Post by Sonia Boué | ACAT: Ala Costa Adult Transition Program·

  22. Dear Dr. Manuel Casanova
    My name is Claudia Mazzucco. I’ve been diagnosed in adulthood with Classic Autism (Temple Grandin’s type) in London in the summer of 2001.
    You have argued that “Neurodiversity is a social club where many of its participants are non-autistic individuals claiming to be autistics.” Yes, indeed! Why do they seek to be autistic? This consistent self-delusion leads me to wonder whether we can properly speak of autism in individuals who do not have a juxtaposition of developmental disorders like (1) Delayed and disordered language, (2) Arms flapping, (3) Incapability of introspection or deep thought, let alone of poetic or metaphoric leaps of the imagination, (4) Rocking motions back and forth, (5) Under-connectivity of the neurons, and (6) Chaotic and unprocessed sensory experience which literally sets a brain on fire.
    As a person with a diagnosis of Classic Autism, I reject any connection to Asperger Syndrome and, most basically, to the arrogant presumption that Asperger’s Syndrome is a “difference inside the brain.” Autism could be the reason why a person does not talk (like Tito Rajarshi Mukhopadhyay) but autism is not the reason why someone does not have “much luck making friends as a kid.”
    When I was a child, going to elementary school, my grandma taught me to regard other people with equal respect and courtesy. Be polite. Thus I did not feel alone and scared, and never wondered if someone around me understood me. Why should they? I graduated from High School in December 1982. The five years at Escuela Normal Dr. Benjamin Gorostiaga had been friendless, but I’ve learned a great deal of independence.
    Throughout the history of civilization, there were numerous reports of unusual men and women who had always been out of touch with their environment. They were incapable of having appropriate social relationships. They became isolated and fell back on their inner experience to interpret reality. I would posit that such social deficits that are characteristics of Asperger’s Syndrome are, as Roy Richard Grinker reminds us, also common in the general population, albeit in minimal, subtle forms that cause no alarm or major social problems.
    The other day, then, when I was speaking on Facebook with Donna Williams, I said to her that people like us, who have fully attained independence from “severe autism,” should be “graduated” into a different diagnosis like “P.B.S.A.” (People Beyond Severe Autism) that would distinguish us from Portia Iversen’s son, Dov and Tito Rajarshi Mukhopadhyay, who remain trapped in an autistic brain and cannot enter into a full command of language and require an electronic keyboard in order to communicate, though sometimes not effectively.

    Like

  23. Liar? It is hard for me to conceive of a person as a liar; the only image in my mind is of Jim Carrey and his movie of 1997 “Liar, Liar.” I think in pictures. Peace is a dove, Christianity a picture of the Pope in the Vatican, Terrorism is the 9/11 attacks. Yesterday, I asked you what drives you to insult people because, without any ground to support your opinion, you’ve called “idiot” to a Cambridge Intellectual, whose learning and researches made him an authority on Developmental Disabilities (his name I am forbidden to reveal in this post, for the British are very sensitive about being named in online discussions). That’s was real good. Besides, were you there present when Donna Williams was diagnosed with “something else”?
    I grew up in a culture vastly different from an American culture. The diagnosis of autism was, indeed, given to me in childhood but it was not “validated” by my own pediatrician in La Banda (Santiago del Estero, Argentina) because in the seventies autism was described as an “infantile schizophrenia,” and he did not perceive my difficulties in the development of social relationships and communication skills as problems to be addressed. It is certain that few societies around the world have categories corresponding to “autism”, “borderline syndrome,” “bipolar disorder,” or even “depression.” And even if they did, they wouldn’t necessarily define them the way we do in the United States.

    Like

  24. Bravo Dr Casanova! Your post is one of the best critiques of the neurodiversity cult and has obviously hit a few nerves. It has rattled the cages of the usual suspects, (as one can see from the respondents) who claim to speak for or on behalf of autistic people.

    Has anyone taken the time to read the pages and pages and pages of terms of reference and rules that accompany some on-line neurodiversity forums?

    Dialogue, open dialogue is not the desire of the neurodiversity cultists. Argument, debate, and rational analysis is not allowed.

    You referred to “team”. The NDers forget there is no “I” in TEAM. The very nature of their autism precludes their ability to work collectively.
    This is the paradox! I don’t need to explain this, it is self evident to anyone with a modicum of understanding of what autism is. It’s the essence! Aut – ism.

    As for parents who don’t have autism but who publicly lend their support to neurodiversity, I have met some of them. Often, I have sensed their embarrassment, fear, guilt, sorrow, despair and most of all their denial. You can easily recognise these kinds of parents. They use words like a weapon. If you are not with them, you are against them and are labelled disablist, apologist, autism hater, curebie, etc etc. They demand acceptance and equality, yet promote inequality by using words like awesome when describing their child’s autism. I have five children, one has autism. Not one is better or more “awesome” than the other.

    These parents’ passion for neurodiversity stems from the aforementioned emotions not to mention fear. They also eschew any notion that autism can be treated, could be treated, should be treated, alleviated, scientifically investigated, improved or God forbid cured. Many of them see their children’s autism as a gift, including the so-called co-existing conditions.

    At this juncture there is no cure for autism. Mention that word, however, and you will soon meet the wrath of not only the NDers but those who have been brainwashed by them. Science is trying very hard to cure cancer, diabetes, etc, but when it comes to autism, there’s a no go area, debate is not even allowed. One is met with the war cry, “autism is a life-long incurable condition” and don’t you EVER forget it. This is quickly followed by “autism should NOT be cured, but embraced by all for its “awesomeness”. These comments come not only from autistics but from parents, who in spite of their public protestations of their child’s awesomeness, admit privately that they are terrified for their child’s future and no one is available to help, not even ND. What parent in this world would deliberately wish autism upon their child? None I hope. Yet, so many NDers want us to believe autism is just a different way of thinking. Some (many) even believe their brains are superior to non-autistics.

    There are many cults and movements today where debate is not encouraged or welcome. Neurodiversity is but one of them.

    Please continue this discussion. It is desperately needed. Nature abhors a vacuum and that’s how neurodiversity began. Most parents of young autistic children are too busy and/or overwhelmed trying to cope. Many of them, however, are vulnerable to anything which provides solace and/or a positive spin on what is, more often than not, a very difficult condition.

    The very term “neurodiversity” is meaningless, has achieved nothing, has explained nothing and in fact has encouraged dangerous segregation not to mention faux elitism. It must be intellectuallly challenged and opened to rigorous scrutiny.

    Like

    • Brendan, right throughout that tirade you didn’t address the real neurodiversity. You only addressed some who support the concept, and even then you got a lot of it wrong. It’s not a cult. Neurodiversity is what it says – “neuro” (Brain) “diversity”. Every human brain, like every human being, is not created the same. Every brain is different, across every culture, every race, every condition/disability. Every Autistic brain is different in it’s own way. That’s the true definition of neurodiversity. Some have used the term in a way that dilutes it’s meaning and changes it to meaning some sort of culture (or cult as you called it). Both are incorrect. The use of the term “team” is irrelevant in this context. But when you extend it to the whole human race – then it becomes relevant. We are all human beings. Every single one of us. That’s the “team”. Now by opposing neurodiversity in it’s correct term, it is people like you who are putting the “I” in team. That’s why you see the reactions you do. We want to be a team with you, but you don’t want to know – because you don’t accept brain difference as real and a part of being human. Do you see what I’m saying? Be mindful of what you understand and what you don’t. Be a part of the solution, not a part of the problem.

      Like

      • Phil, if you have it all figured out, then why have you been such a menace to society? I have an official diagnosis, which is more than I can say for the droves of shady characters, especially on tumblr, some who admit to being self-diagnosed, while spreading this vile and twisted ideology. What qualifications do you have to undiagnose me? And at the appointment that led to my diagnosis, my mother was questioned. You can’t disprove the holdbacks I have, which were examined in tests which were conducted on me. What kind of “con artist” puts themselves in the terrible conditions I endure? You don’t know what I’ve been through. I’ve tried so hard many times to do so many things. What rigorous work have you done in your days? I’ve basically busted my wrist trying to chop out a tree root with an ax, among other strenuous tasks I’ve worked at to make a few dollars. If my low self-esteem ruined my life, then where did I get such a low self-esteem from in the first place? And why did I even bother trying out so many goals with hope of achievement, if my low self-esteem was the cause rather than the effect of my problems?

        I’m not the only autistic speaking out against this nonsense. I wish there was a way to shame you for promoting this backward mind-control. And the more that those in the community can realize what the science shows of the condition, and of its high variability in symptoms, the less they subscribe to these strict, anti-treatment views, with their outrageous fantasies and defeatist approach to this whole ordeal. Disability is not diversity. Impairments just hurt, and are not neutral, identity composing differences.

        Like

      • Note that the comment from Billy Cresp above is a typical pack of lies consistent with his modus operande that he has been applying for years. It really ought to be deleted. Thanks.

        Like

      • TImelord: It is a strange fact, and one which appears never to have received proper attention in this discussion that differences in our brains have always been accepted as real and a part of being human. The human brain is a large and unwieldy machine, automaton like, but the experience of reality seems built into the machine in a special way. The brain’s unique capabilities, the expression of feeling, sensibility, mood, the inner life, make reality itself uniquely knowable. What then will be the Neurodiversity Movement’s contribution to the whole of society? How is the Neurodiversity Movement reinforcing American cultural aspirations?

        Like

      • Claudia,

        If Autistic Activists (not Neurodiversity movement – if you wouldn’t mind) get everything all Autistics deserve, American cultural aspirations will have to change and very quickly. At present, cultural aspirations don’t take true neurodiversity into account. This is because of the fear mongers and the con artists trying to use Autism (and any other condition seen to be brain based as such) for a negative eugenic agenda to create a super race and eliminate perceived anomalies. As you have said, the brain is a large unwieldy “machine” – but it needs to be that way as part of the evolutionary process and the learning process as well. Once the con artistry is exposed and the fear is allayed many problems will be resolved. People want these problems to continue and I for one won’t stand for that.

        Like

  25. Pingback: Egalitarianism & Equalism – Is That The Way Forward For Autism? | Paul Isaacs' Blog·

  26. Pingback: Building Trust in Autism Research: A Response to Dr. Manuel Casanova | Dani Alexis·

  27. Pingback: Neurotypical – Is the Word Useful? And/or Meaningful? | Paul Isaacs' Blog·

  28. Pingback: Neurodiversity Movement Opposition·

  29. Thank you Dr Casanova and Jonathan Mitchell for speaking the truth about autism. Many autistic rights claim that autism is a disability because they blame society for their own problems. They also cherry pick historians and claim that their autistic, without any scientific proof. The only thing that tick me off about autistic rights, that they trivialize the medical problems that autistic people suffer and thinks that it’s normal to suffer from a disability.

    Like

  30. Pingback: The Problem with the Neurodiversity Movement | Cortical Chauvinism·

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s