Autism's gadfly, Jonathan Mitchell has written a comment taking lbrb's Kevin Leitch to task for his loopy defense of Neurodiversity. In Left brain, right brain or no brain, Jonathan, as always, is exceedingly polite, a quality of discourse not always found at lbrb and other ND sites when trashing Jonathan for refusing to drink the Neurodiversity Kool-Aid.
autism
thanks for the compliment harold, though I must concede I am not always exceedingly polite. Sometimes i wish i could take lessons from you. I have sometimes gone over the line in comments or been abusive. Mostly I was just responding in kind to the abuse that is so common among neurodiversitites, others I may not have been as polite as i should have been but I will keep trying to be polite even when neurodiversitites insult me instead of trying to refute my arguments with common sense.
ReplyDeleteHi, Harold,
ReplyDeleteI tried to post this on another of your blog posts related to Ari but had trouble. I hope it doesn't show up in more than one place.
Be warned that this is LONG, and spans multiple posts.
Regarding Ari Ne'eman and neurodiversity,
I support "neurodiversity" in the strict sense that I take that word to mean all of us, to the best of our ability, accept and support others with differing neurology than our own.
I do not support "neurodiversity" in the way it is currently being practiced by some of us on the spectrum.
I think Ari Ne'eman is doing a good job of raising the profile of adults with AS. I think he is very young to have accomplished all that he has. I think he deserves a lot of credit. But, as someone who is very young, I think some of his positions need further thought. That is true of NT's, whose positions on various issues mature with age. I see no reason why anyone should expect all of Ari's positions to be fully thought out at age 21.
There are two related areas where I think Ari thinking needs more depth. One is his seeming lack of awareness or seeming unwillingness to acknowledge the impact we can have on others. The second related issue is his seeming unwillingness to consider the legitimate concerns of others.
We can have a significant impact on the lives of others, regardless of where we are on the spectrum. For people with severe autism, our impact is obvious, probably doesn't need to be repeated here. But even for those of us who are high functioning, our impact can be significant for parents, siblings, and as adults on our employers, co-workers and partners.
Does this mean we have no rights at all? Of course not. But does it mean those around us have no rights either? No, it can't mean this. The fact that many, including those of us with AS ourselves, may not have realized the accommodations necessary to succeed in life, and the fact that we may have been denied many basic rights, does not mean that we should now refuse to consider the legitimate concerns of others.
So why do I think some of Ari's positions do not consider the legitimate concerns and interests of others? What examples can I give to support my belief? Here are just a few.
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ReplyDelete(1) Ari's positions on research into cures for autism is one example. He wants the right to remain autistic, and doesn't want to be cured. Fair enough. That is his right. I want to be cured. That is my right to feel this way. As long as there is no cure, those of us who feel as I do, and there are a great many of us, have no choice. I am not asking for autism to be erased from the face of the earth. I am asking for choice. As long as there is no cure, I do not have that choice.
(2) Ari's position on genetic research is another example. He states "As a result, efforts to identify genes associated with autism with the goal of developing a prenatal test, enabling the possibility of selective abortion, should be met with opposition from all those concerned about the issue of disability rights. Given the fact that 90% of fetuses that test positive for Down Syndrome are aborted and there exists a similar social stigma against the autism spectrum, I urge both private foundations and government research institutions to re-orient their funding away from research with eugenic applications."
How could anyone be against such a position? Well, there are a number of problems with this position. Who is to say that efforts to identify genes associated with autism have the goal of developing a prenatal test? Ari? The CDC? You? Me? Genetic research has many possibilities. Yes, genetic research could be used to develop a prenatal test. It could also be used to reverse some of the effects of poor brain connectivity. It could possibly be used to develop a cure, giving a choice to those of us that want that choice.
And what if genetic research did lead to a prenatal test for autism? Many parents of NT children, for many reasons, are unable to care for their children properly. Does Ari think that every child with autism is born into a family with loving parents, and with the resources, stamina, patience and courage to raise their child to give them the best possible chance at having a fulfilling life? Does he have any idea of the strain this puts on families and relationships? Does he have any idea of the financial hardships a child with autism can have? Does he have any idea of how much harder it is to try and keep a job with autism in the family?
Does this mean that we should not be born, due to the fact that raising us can cause greater hardship on our parents than raising an NT child might cause? No, it absolutely does not mean this. What it does mean is that this is a very personal choice, and that if a prenatal test existed, every family would have the right to make their own decision as to whether they would take that test, and what use they would make of the results. We will stand the best chance at a fulfilling life if we are born into a family that wants us, and will love and care for us, and has the resources and capacity to do this. It does not serve us, families, or society to deny families the right to make their own choices, if they feel they do not have the capacity or resources to properly raise and care for us.
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Chris (cmaspt on Twitter)
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ReplyDelete(3) Ari's position on Cassandra syndrome is another example. For 50 years, from the time of it's discovery in 1944 until it's inclusion in the DSM-IV in 1994, Asperger's Synrome was "never properly recognized by any psychological association and [was] not supported by any peer-reviewed scientific research" - the words Ari uses to describe Cassandra Syndrome. Does that mean Asperger's Syndrome wasn't real for 50 years? Of course not. Does anyone besides me see the irony in those of us now diagnosed with AS using the argument "it's not recognized" as an argument against Cassandra Syndrome?
We do have an impact on the emotional health of others. That is a reality, regardless of whether it has been studied, proved, or included in the DSM. The fact that something has not been "proved" does not mean it is not a reality. A good example is the cigarette industry, which until recently tried to convince us that the link between smoking and cancer had not been "proven". Ari may not be aware that Maxine Aston now counsels NT/AS couples, and has written books, with the express goal of helping those relationships survive.
(4) Ari's position on the parenting rights on those of us with AS. He claims there are "stereotypes and libels that seek to encourage discrimination against Autistic people in family law and relationships. ... [people] try and deprive us of one of the most common ways of expressing membership in the human community - the right to have a family, to marry and to raise children on an equal basis with any other citizen." There is a big difference between a stereotype and reality. Is it a stereotype that blind people can't see, or a reality? Ari is big on parental rights here, but has remarkably little to say in terms of parental responsibilities.
Those of us on the spectrum can have impaired executive functioning. Impaired executive functioning greatly affects our ability to care for children. Should this automatically eliminate us from parenting. No, it should not. But we'd better be prepared to show how we have overcome this deficit. Now how we "will" overcome it at some unspecified time in the future. But how we have a consistent and proven track record of having overcome it in the past. We definitely can overcome this deficit, but many of us have been unable to. When the welfare of children is involved, the onus has to be on us to show we have been able to do this. The welfare of children trumps theoretical, academic "rights", stated without reference to parental responsibilities.
What about emotional support. Emotional support is critical to the healthy development of children. Those of us on the spectrum are not noted (to put it mildly) for the emotional support we give to others. Again, should that automatically disqualify us from raising children? I don't necessarily think so. I think we can compensate, to varying degrees, for our impaired abilities to give emotional support and empathy to others. But again, I think the onus has to be on us to demonstrate what historical track record we have of overcoming these difficulties, and what work we are doing to ensure that our children receive the emotional support that they need.
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Chris (cmaspt on Twitter)
... last post :-)
ReplyDelete(5) Ari's position on people and organizations trying the best they can to cope with the difficulties associated with spectrum disorders. Ari has labelled Families of Adults Affected by Asperger's Syndrome a hate organization (http://www.autisticadvocacy.org/, "The Autistic Self Advocacy Network has launched a petition to tell Dr. Tony Attwood and Dr. Isabelle Hénault to stop associating with anti-Autistic hate groups that try and write discrimination into the law ... For the last decade, groups like Families of Adults Afflicted with Asperger's Syndrome (FAAAS) have been promoting the idea that prolonged family contact with Autistic adults in romantic or family relationships is harmful to "normal" people.")
The fact is, that is hard for both NT's and those of us with AS to live in close contact with each other. Does that mean we can't? Obviously not. Does that mean we don't want to live together? Absolutely not. Does that mean there are no problems? Not at all. There are problems in every relationship, including NT/NT, NT/AS and AS/AS relationships. Having said all this, there are certain unique challenges in NT/AS relationship, relating to emotional intimacy, that are 100% attributable to AS, that need to be realistically acknowledged so that they can be addressed by both sides in a compassionate manner. To deny that these difficulties exist is to deny reality. To label organizations that try to help NT's overcome these difficulties, so that they can continue to care about us, hate organizations, is to hurt the people that care about us the most, and are trying the hardest. To discourage respected professionals, such as Tony Attwood and Isabelle Henault, from giving these organizations support, is to make it that much harder for these organizations to balance the help we need with the help those close to us need.
Ari is not doing anyone any favours by his positions on these issues. His arguments may sound "intellectually right", and they probably are. They ignore the realities and responsibilities of real life.
Ari is young. As far as I know, he is not married, does not have children, and has not held a long term job. Does this mean we should ignore what he says? No, it does not. He has a very good mind, and a lot of good things to say. I expect he will continue to be a good advocate for us. But, does his inexperience give him the right to speak with authority on matters in which he has had no direct experience?
I think not.
I urge Ari to consider the thoughts of all of us on the spectrum, to respect viewpoints opposed to his own, and to respect the rights and legitimate concerns of non-AS people that are nevertheless strongly affected by the spectrum, without resorting to hurtful labels.
Chris (cmaspt on Twitter)