“Instead of focusing on your differences, think about the things all people have in common… like the tendency to focus on their differences.” Anonymous
“I would never want to belong to a any club that would have someone like me for a member.” Groucho Marx
The purpose of this blog is to provide a more dimensional understanding of autism. In some of my previous writings I have tried establishing dialogue in regards to the meaning and implications of the neurodiversity movement. I was happy that the dialogue proceeded with civility. In any discussion, lack of courtesy and politeness engenders doubts and enlarges any existing demarcations between its participants.
In the following paragraphs I would like to question assumptions on both sides of the neurodiversity divide. I do not seek to be right but rather to explore pro- and con- arguments in the ongoing debate. I do not have a judgment for possession of the truth. I expect readers to have different points of views for which they may offer their own comments.
I have stated that neurodiversity can’t take precedence for sponsoring as initiatives the avoidance of pejorative terms that “pathologize” the condition nor the so-called civil rights advocacy when publicizing the physical and emotional abuses to which some ASD individuals have been subjected. The advocacy for equal rights/opportunities is inherent to every autism support organization and is ingrained in each one of us as part of our common human dignity. If these initiatives were the core precepts of this movement then Bernard Rimland, rather than Judy Singer, would have been the founder of neurodiversity.
The main tenet of the neurodiversity movement is their health-related judgment that autism and other neuropsychiatric conditions comprise part of the normal variability of traits that characterize the human race. In this regard they advocate that these conditions belong to the social rather than the medical sciences. If this were the case they logically deduce the lack of need for either treatment or research into these conditions. Therapeutic attempts, as with applied behavioral analysis, are therefore deemed as misguided and unethical. These opinions are not of the few but can be found widespread within the neurodiversity movement (i.e., type “neurodiversity”, “research”, and “cure” into any search engine). As the author Andrew Solomon has stated “those who contend autistics are neurodiverse…feel they should be left alone.” Probably the greatest advocate for this polarizing stance is Ari Ne’eman and the Autistic Self Advocacy Network (ASAN). In truth, other neurodiversity advocates, like John Elder Robison, support a softer approach that favors both treatment and research. John primarily advocates for those research avenues that can create a difference “now” rather than in future generations. (Note: This same stance was supported by Bernie Rimland who went on to establish the Autism Research Institute, see http://bit.ly/1zuuHPp).
We have to recognize the discoveries of science including the progress created by the introduction of antibiotics, chemotherapeutic agents, and anticonvulsants. Do we want to return to folklore medicine? At one point in time epilepsy was known as the “Sacred Disease”, AIDS was a curse, and the plague was caused by divine wrath. Let’s be clear that there is nothing sacred about any of these conditions. Disease is not caused by the gods. To think otherwise denotes lack of knowledge and, on occasion, lack of empathy. These are serious conditions. Seizures in ASD may be associated with falls, bone fractures, cognitive impairment, disturbed consciousness, and unexplained sudden death. This and other comorbidities are serious conditions and they DO need treatment!
Many years ago priests were stationed between life and death and their advice, rituals and comfort, were sought in these matters. In more recent times this role has been transferred to physicians. Now the neurodiversity movement asks us to embrace a further shift in this matter. Should the plumber, carpenter or business person be able to take an authoritarian stance in regards to health matters? Can a layperson offer medical advice when he/she lacks proper education in these matters? …The perplexing answer, and a humbling one for physicians, is a resounding yes. We can’t typecast people by the disorder they have. As I have followed the neurodiversity dialogue with many autistic individuals over email my view has broadened to consider ASD an existential problem that emphasizes subjective testimony rather than the empirical one provided by science. Indeed, I agree with the notion that the Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association is a haunted house wherein diagnoses are instruments used to constrain individuals into the preconceived notions of health professionals.
Medical education engenders a schooled obsession with creating labels and establishing protocols. Pain, on the other hand, is an individual experience that encompasses an enormous field that almost always escapes the grasp of medicine. We should always consider a humanistic rather than a biomedical dimension when attempting to alleviate suffering. Patients need to be able to explain their ailments. You can’t undercut their claims. Their testimony should not be discredited in favor of laboratory results. Michel Foucault in “The Birth of the Clinic”, describes the dehumanizing effects when health professionals separate the patient’s body from their identity.
Neurodiversity proponent claim that they fall within the “normal” spectrum of neurological variability. In turn physicians point out to the increased prevalence of brain malformations and its association to seizures. Labels on one side, emotions on the other, the conversation is a disconnect. This is a confrontation between the hubris and the humanity of medicine.
Neurodiversity brings a moral view on autism. It provides a shocking picture about the way we should understand a condition, about the interpretation of science. In this regard, autism inscribes values and beliefs within medicine and society rather than the other way around. These are people deeply hurting that are speaking. In essence, the neurodiversity movement, as Bernard Rimland before them, has been an attempt to personalize medicine. Despite my disagreements in regards to research, treatment and even finding a cure for those truly handicapped by ASD, I need to acknowledge some of the positive aspects of the neurodiversity movement.
Hopefully the ongoing discussion will be empowering to its participants. The major problem within the autism community is not our differences of opinion but rather, how to sustain better/positive relationships between ourselves. Division leads to disengagement and lack of productivity. Blame does not solve the problem. We are all in this together. Clarity and consideration should allow us all to be part of a winning team.
One possible way to continue the dialogue is for those wishing to participate, to approach the problem, and their commentaries, from what they would consider to be the opposite or contrarian point of view. In this regard you would be acknowledging the other person’s way of thinking and feeling. Encourage others to clarify your thoughts and to see if you have understood them correctly. Avoid making direct criticisms. There is no competition to be right. The prize is not in talking but in active listening, in mindful attention. You can value another person’s feelings even if you disagree with their arguments. We have to make a commitment to bring the autism community together. You wouldn’t be reading this blog unless you cared.
Comments? Advice? Let me know your story.
Figure: A head-to-head confrontation with a bull would not be a wise thing. Bull-fighters or Matadores have learned that sometimes you have to let the object of your confrontation through in order to make a point.
Very interesting,and certainly food for thought.Rimland died in 2006.By this time the neurodiversity movement was well established.Did Rimland ever say anything about his opinions on neurodiversity one way or another? I think,if anything,there is a lot more evidence to point to Rimland as the father of the antivaccine movement.There is no question that Rimland’s embracing the idea that vaccines are a major cause of autism is the biggest stain on his legacy.
Research has moved on quite a bit in the nine years since Rimland’s death.A very complex picture of autism is slowly emerging.One of a disorder that is not singular and monolitihic,but one with many different subtypes,largely based on comorbidities,such as autoimmune,behavioral and neuropsychological,and metabolic and mitochondrial disorders.And those with any combination of the three.
Autisms,not autism.I do not believe there will be any civility or tolerance,let alone solidarity or unity,in the autism community,until we are all in agreement on this one key point.
Although Rimland was misguided in his views against vaccines he did take an advocacy stance on behalf of autistic people. He wrote and publicly argued against the psychoanalytic basis that was being promulgated by the medical establishment. He fought for accommodations and for educational reforms. When he established the ARI and his national survey it was to establish research that could provide a difference in our lifetimes.
Rimland’s book was published in 1964 and his advocacy had started earlier that. The “new movement” of neurodiversity started in the 1990’s. Curiously Wikipedia says that, “The term neurodiversity also represents a move away from the “mother-blaming” or refrigerator mother theories of the 20th century”. Isn’t this a flashback to Bernie Rimland?
Although you maybe right and attempts to mend the rift may be for naught there is much more to gain by standing together.
Thank you again for all of your comments. Now I am waiting for Jonathan whom I believe won’t be very pleased with the blog.
Well, I guess your wait is finally over!. I am not pleased nor displeased with this blog post. I just believe that neurodiversity’s contention that we who are opposed to it are opposed to human rights is a large strawman. No rational person who cares about autistic people is against human and civil rights for them. However, neurodiversity is really about how autism (and other neurologic diseases) are only a normal genetic variation or an alternative form of brain wiring and that acceptance and accommodation will solve everything.
Actually, in terms of psychoanalytic theory neurodiversity is the converse of Rimland since at least some of its members have told me that the reason I’m disabled by my autism is that I had a domineering mother who looked at my autism as a curse and wanted a cure and I got my attitudes from her which became a self-fulfilling prophecy. As a child, my parents and I actually lived through the Bettelheim era as I spent more than ten years in psychoanalysis starting at just about the earliest time in my childhood. Neurodiversity (or at least part of their membership) just wants me to live through this again.
Though your attitude of working with and trying to establish a dialogue with neurodiversity rather than having an adversarial relationship with them is admirable, but really futile. Neurodiversity (at least the majority of its membership) has an us vs. them mentality and anyone on the other side is wrong and is worth of ridicule and derision. I’ve certainly received enough of it in the past sixteen years going back to the old list.serves from these august individuals. They don’t want a dialogue or being able to work with other people. They just want to promote their warped agenda and be abusive to anyone who gets in their way.
It is interesting that many of the comments from the neurodiversity group denote a lack of understanding as to the basic suppositions of the movement. I think that in order to establish a useful discussion at least the basic precepts should be clearly spelled out. I received some abuse by email and in blog comments that I refused to publish. That is to be expected. However, I do understand that many of the more abusive people that have infiltrated the movement are not truly autistic and to my best guess, may have a personality a disorder. Many of the autistic individuals within the neurodiversity movement seem willing to work things out and are quite reasonable. In this regard trying to work together and come to an agreement may still prove fruitful.
members of this movement acknowledge that autism can be disabling, but they choose not to let that make them think that that’s ALL autism is, and that they should be given a chance to let the good parts of autism shine through.
The “good parts” of autism only apply to autism that is very high functioning,or to those who are the even rarer savants.This is a point that those of us who oppose neurodiversity wish those who advocate neurodiversity would acknowledge.Levels of functioning are everything.Not all autism is created equal.
The thing about cerebral folate deficiency is,that treating it,allows you to come back from some pretty severe depths of low functioning autism.This is well documented in the published articles on the disorder.Having this condition,and treating it,gives you a very unique perspective on both sides of the functioning divide.Once you have been able to come back from the depths of LFA,and are able to think rationally,there is no question in your mind,that there are no good parts of autism.Any talents or abilities you have are innate,and are made even greater,once the autism is treated.The possibility of this is what scares the neurodiversity movement s***less.
I would disagree Roger. Are you aware of Carly Fleischmann’s story? (Canadian autistic girl considered very low-functioning, who astounded everyone).
Although high-functioning, there are many aspects of my condition that are disabling. Therefore the skills it gives me, including great memory, attention to detail, great research skills etc. are entirely wasted as I lack the confidence to do anything life-changing with them.
I guess you could look at the neanderthal theory regarding autism when it comes to neurodiversity. The idea that there are many traits of Asperger’s that were useful in those times for hunting and self-preservation.
Two of the ideas you express are common neurodiversity talking points and perfect examples of exactly what is wrong with neurodiversity.
First is conflating verbal apraxia and non-verbal autism and using the former as an example of the latter. People, such as Carly Fleichmann, have neurological issues with physically making sound but have mostly intact language abilities. In contrast, people who are non-verbal because of autism have issues understanding and using language. While you can have both conditions in one person and while both can have outwardly similar appearances they are very different things.
In verbal apraxia you have people who are still able to understand language and use it to communicate through alternate means, such as typing. In non-verbal autism there is a fundamental problem with processing language itself no matter the form of communication.
Second is the idea that autism was somehow beneficial in ancient times which is patently absurd. If you send any time with any child with any level of autism it is extremely apparent that safety is a major concern. Every single child with autism that I have ever met has a decreased awareness of their environment and increased chance of injury resulting from that lack of awareness. I can’t imagine many children with autism would survive in a hostile environment where making a sound at the wrong time could mean the difference between life and death.
In my ever so humble opinion, the day that a neurodiversity advocate actually acknowledges that what we call “autism” is primarily a disabling condition without immediately tacking on a “yes, but”, the day that they stop trying to steal the voices of those who can’t talk for themselves, and the day that they can look my children in the eye and admit that their problems are not some societal construct is the day that a serious conversation can start. I think that is as likely as me winning the lottery tomorrow without having even bought a ticket.
Just like I have very little patience with the top 1 percent complaining about their tax bill I have very little patience with the top 1 percent of the autism world (i.e. ASAN et al) complaining about how very hard their problems are while denying and/or ignoring the much more significant problems of the rest of the spectrum. Yes, they still clearly have problems but the other 99 percent of the spectrum would love to have only those problems.
All good comments. Thanks you for participating.
Good comments indeed. Question: How would you define a member of the Neurodiversity Movement, is she/he just a normal person who happens to think differently like everybody else?
Trying to obtain a fixed definition is very difficult. My own pursuit for one has been more like shooting at a moving target. Some neurodiversity proponents believe they are part of the normal phenotypic spectrum of society, other believe they are handicapped. Many do not believe in research or finding a cure, others do. Even some staunch proponents like Ari’Neeman seem to contradict themselves.
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Hello! Have you read “The horse boy”?! The story of an autistic kid that travels with his parents to go see the shamans in Mongolia?
You mention epilepsy that was once considered as a “sacred disease”. Actually it seems it would be more precise to say it was called a “shamanic disease”, menaing that those with epilepsy had to be brought to a shaman to study, learn and practice all the shamanic technics, live by the shamanic rules, repsect the shamanic taboos and become a shaman themselves. The way of life of a shaman is a mix of rituals, strict rules, special diets, phytotherapy, time spent alone in nature, in silence, meditation… It could be seen as a sort of “ancestral biomedical treatment” for epilepsy and devellopment disorders at large.
Folklore medicine actually have quite a lot to teach us! Exemple: today you can buy ox bile online, it’s a great digestive support supplement (for bowel movement, gut flora and liver support), often recommended in biomedical groups, including in the Andrew Cutler’s chelation protocole. Well, ox bile (and lots of other animals biles) is actually a traditionnal chinese medicine remedy, centuries if not millenaries old! 😉