A recent article on The Daily Beast has acquired a certain amount of attention on the internet (http://thebea.st/1ziYuY1 ). The article, written by Elizabeth Picciuto, was titled, “They Don’t Want an Autism Cure”. Least to say the article provides a biased perspective on autism and the Neurodiversity movement that is worthy of a personal blog but not of a news outlet. The major argument presented is that autism is a social problem thus justifying claims by Neurodiversity proponents as to why they are not interested in finding a cure. The opinion, to a large extent, is derived from an interview with Julia Bascom from the Autistic Self-Advocacy Network or ASAN. According to Ms. Bascom, who apparently claims to be autistic, flapping her hands and other obsessive traits is an expression- a wanting to be herself. The claims are backed up by interviews with several philosophy professors and ends up by drawing an analogy between autism and homosexuality; once seen as a disorder homosexuality is now accepted as a personal choice. Autism is thus claimed to be a social model of disability rather than a medical problem.
I have written previous blogs on the subject and tried to achieve a middle ground. I do believe that there is a need for a special classification in the DSM that would better represent high functioning autistics. I also believe that medicine has failed patients by emphasizing diagnosis and relegating the human side of suffering to other disciplines like social work and psychology. However, it is unfortunate, that many neurodiversity proponent exhibit a complete lack of empathy and express their way of thinking by using nonsensical jargon and arguments.
Neurodiversity proponents claim that autism is a neurological condition that appears as a result of normal human variability. I am a Board certified Neurologist. My field, Neurology, is a specialty of medicine that specifically studies disorders of the nervous system. You can’t have a neurological disorder and be normal.
As a Neurologist who has seen quite a few real autistic individuals I can attest to the fact that flapping your hands and other obsessive traits are not “wants” but “musts”. These are things that an autistic is impelled to do, it is not an expression of his/her personality. If you think these stereotypical movements are wants, then most probably you are not autistic! As an aside, gaining backing for your position from philosophy professors could have scored points in the Middle Ages, but not in modern times.
In all of this I would have asked the opinion of my grandson as to the Neurodiversity movement. However, I forgot that I can’t do that because he is non verbal. He may also not be able to understand my question as he is profoundly mentally retarded. However, I may still try to draw his attention on this important subject… whenever he is not having a seizure. If I can’t get an opinion from him I will ask my daughter. I will probably have to wait until she is free from changing my grandson’s adult pampers. Alternatively, I can get the impression of some autistic adults. I know a good many as our state hospital reclassified many of their inpatients who now have a diagnosis of autism and all are over forty years of age. However, they are all more or less like my grandson. I could also go to our clinics where we see a large number of autistic patients with seizures or behavioral problems. I guess Neurodiversity proponents must claim it is a gift having a child who has to wear a helmet because at any time he/she may have a seizure and loose consciousness. Of course Neurodiversity proponents can blow away my argument by saying that wearing a helmet is an expression of that child’s individuality. It certainly makes the child popular going to school with a helmet. Maybe they also explain eye-gouging behavior as a gift born from accelerated evolution and, of course, our children don’t need their eyes any longer. I am truly looking for the timeline as to when did head banging and other maladaptive behaviors became gifts. No need for treatment or research, in what universe are these people living? -To be truthful, a minority of Neurodiversity proponents accept the idea of treatment and research.
If autism wasn’t a medical problem, I would be the first person to celebrate and join Neurodiversity. In truth the Neurodiversity movement has been hijacked at best by a number of misinformed individuals or at worse by individuals with personality disorders claiming to be autistics. We all want acceptance for our autistic children, we all want better accommodations for them, we all want to avoid the use of hurtful pejorative terms. This is part of our human dignity. Neurodiversity can’t take claim for a civil right movement that started well before the term Neurodiversity ever came into existence.
There are some good points to Neurodiversity but also many nonsensical arguments denoting lack of knowledge and empathy. I enjoyed reading many of the comments to The Daily Beast article. It is obvious that real autistic individuals and their parents won’t stand for more insults.
Comments to the article:
givemeyourking 4 days ago
The severely autistic behaviors cannot be tolerated. It’s not a matter of accepting someone’s incessant flapping and lack of eye contact. Severely autistic people are usually severely mentally retarded as well. They will toilet anyplace they see fit, they will fling their own feces on you or smear them on the wall, they will screech and howl at the top of their lungs ALL DAY LONG. They are never disciplined, so they act like monkeys all the time knowing they can get away with it. Autism Speaks is absolutely doing the right thing in seeking a cure. The autistics who are opposing it are the high-functioning ones who don’t need it.
Middle_of_the_road_guy 4 days ago
I have a son with mild autism. He struggles to keep jobs, keep relationships and to live on his own. Yes it would be great if people were more accepting of his condition, but it would be better , much better, if he could find less turmoil and more joy in his life. Those who want no “cure” are so wrong and are cruel. Nothing more than a self centered view.
jazzlily 5 days ago
It’s called a spectrum because of the totally different severity of each person. I can understand why parents with an autistic child you can’t control their bowels or bladder, lashes out physically at them, is nonverbal, etc., may pray for a cure. Some of that “unique wiring” leaves some autistic brains in a very lonely place. The idea of a cure makes a lot of sense in many cases.
Joe223 5 days ago
It took half the article before you actually quote anyone. Here’s what they said:
““The idea of a cure for autism doesn’t make sense. Autism isn’t a disease or an injury; it’s a neurodevelopmental disability that shapes our brains differently,””
The author of this article and headline is either an idiot or he thinks his readers are
rufustfirefly 5 days ago
Pretty sure my sister would rather not have her son bang his head and do the other things he does.
Gear_Mentation 5 days ago
We heard this s— about deafness, too.
It’s okay if you have to pay a price for being different. It’s okay if being different causes you pain. Out of that pain and difference, comes your genius and uniqueness.
If you want to be accepted, be acceptable. If you would rather be unique, then accept that you aren’t accepted.
Balrogic 5 days ago
These comments gave me brain cancer. You people are monsters, for the most part.
Isbeth 5 days ago
You can’t change other people so insisting that they change for you will get you no where. Your choices are to either stay as you are and accept that you will always be at a disadvantage when it comes to social situations or adapt your behavior somewhat to fit society (which is something even non-autistic people do).
M. O. Kelter said that “Neurodiversity is basically just the view that autism is structured into a person’s neurology and therefore part of who they are. It’s just a newer understanding of what autism is based on what we now know about its neurological makeup.”
I’d like to have the chance to test the merits of this theory as she could show me the exact spot where autism is located in the cerebral cortex, and whether this “autism center” is a functional part of the grey matter like, say, the thalamus which, as we know, receives, processes, & relays info to cerebral cortex from other regions of brain, as well as all sensory info except olfaction. Why is it that the general population has not been born with this “structure” in their grey matter? And where is the scientific evidence that will support it?
I wonder if what she characterizes as being structure into a “person’s neurology” are just static traits of personality as Dr. Hans Asperger has described them. I think they are. You need to be trained in neurology, to exercise it, to practice it. This is not the way to increase the thinking of the public on autism or other serious matters, nor do they realize its ultimate dangerous effects on public opinion and public activity.”
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Claudia, thank you for bringing that up. It seems that Ms. Kelter has a passion for words but otherwise possesses little knowledge to back the same. I am a Board certified Neurologist who also trained in Neuropathology. My focus of research is autism. This year I am directing a symposium at IMFAR regarding brain related abnormalities (in the migration of neurons) in autism spectrum disorders. I can tell you what is new in terms of understanding the brain, not Ms. Kelter. Not trying to be cynical or argumentative, just curious of how people lacking in knowledge and training dare to come with imaginative conclusion not grounded in reality.
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As usual,this is a very well written analysis of what neurodiversity is.What you say about what Ms. Bascom says about flapping being an expression and a personal choice,brings up a point that bloggers like Harold Doherty and Johnathan Mitchell have mentioned more than once.That being there are those in the neurodiversity movement that may be self diagnosed.
I can only repeat what I have said here,and elsewhere,that most in the neurodiversity movement are in complete denial about autism being connected to medical problems.I think most in the neurodiversity movement would completely freak out,if they did any serious reading of the research about how autism can be connected to metabolic or autoimmune disorders,that impact the brain and behavior.Neurodiversity runs completely counter to all known science.
Didn’t know the IMFAR site has some of Dr. Frye’s work on folate and tetrahydrobiopterin metabolism.Glad to see it there.
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..And again I agree with you. Unfortunately, the psychopathology goes deeper than just self-diagnoses. At least some of the more prominent members appear to have a definite personality disorder. They make a living out of being autistics.
Richard is a good friend. Very intelligent individual. I always look forwards to seeing him.
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It is like they have an obsessive, strong, compulsive impulse to prove that they are actually autistics. Now they want to boycott Autism Speaks, and claim the condition for themselves. That is part of their fantasy. I’d gladly let them to have autism when I could benefit from a cure.
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I am glad to hear that.Dr. Frye is wonderful,and has done some incredible work.I count myself very lucky indeed to call myself a patient of his.
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Dr. Casanova,I would like your thoughts on something.Recently I was wondering about what would be the chances of being able to start a “third way” autism movement?One that is a science based advocacy movement that recognizes all of the serious disabilities that goes along with autism,but rejects both neurodiversity,and antivaccinationism.I know Autism Speaks started very small,but they had strong antivaccine beliefs from the start,and have also funded a number of neurodiversity researchers.What I have in mind is more like “the anti ASAN”,so to speak.Broad ideas,but no specific details.Are hopes for such a movement or organization unrealistic?What do you think?
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Maybe we can continue talking by email m0casa02@louisville.edu
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