Autism Mother Marni Wachs Discusses Neurodiversity

Note: I received the following thoughtful comment on autism and neurodiversity from Marni Wachs, an autism mother, and, with her permission, I am posting it here as a "guest blogger" commentary.



Harold Doherty

Re: Jim Sinclair' s Work "DON'T MOURN FOR US: a message for parents of autistic children"


I admire and appreciate the important and necessary work of Jim Sinclair for both autism, and in general for people with disabilities. It is an extremely well-written and concise expression of rights of those with disabilities, the folly of many parents in missing the individual beauty and development of their own child in the constant misguided comparison with an incomparable standard, and the need for public accommodation and acceptance of autism as a different way of being. I myself have used that expression, "a different way of being"' in conversation, and it describes autism well, without defining it as less-than.

I do not, however, accept the entire message and implications of the neurodiversity perspective. I understand the need for a concise theory, but sometimes the neat and tidy package does not fit some of the intricacies of reality.

I do not accept a logic chain that precludes reasonable treatment efforts particularly early education / intervention from being defined as anything but unacceptance, of one’s child and autism in general. I fully love and accept my child, regardless of the abilities he has now or in the future. I don’t accept that it makes me a lesser parent in that I am sending the message that my son is “not good enough” or I don’t accept him as he is. I am a full parent to my children. The same parenting ideals hold for my daughter who is neuroytpical. I am parenting her, based on my love, her needs and what will help her to live a full and happy life. I have always worked hard as a parent to educate her. Does that then imply that I do not accept her? Of course not, it means that I want to educate, stimulate, give options for how to be in the world, teach skills to foster communication and connection with others, as much independence as possible by trying to be the best possible
parent.

If you logically extend Jim Sinclair’s argument, then no child is accepted if they are being educated. If we accepted children as they are, then we would not need to alter their natural state of being by educating them. Would the neurodiversity perspective have me feel guilty or wrong for parenting appropriately as per my definition of good parenting?

Sinclair’s stance works well for natural disabilities, but autism may not always necessarily be the natural sate of being for a particular individual. I do believe there may be some on the spectrum who have autism from a genetic basis, or that autism began before birth, which may indeed fall completely under the neurodiversity umbrella. However, the possibility of environmental triggers playing a role in autism exists, which would mean the possibility exists for reversal or treatment of same, as an unnatural state of being in certain cases. I love my son whether he was born with autism, developed it in utero, or was injured environmentally at some point which triggered or enhanced it. Just as parents whose children have cancer fully love and accept them, but still want to find a cure or treatment, as well as give them an enriching and happy life, how ever the condition progresses, so I want for my son. As for using cancer as a comparison, the comparison begins and ends with the way I have used it specifically in the above example.

I agree with Mr. Sinclair that rigid insistence that the child with autism communicate with neurotypical people in only a neurtotypical fashion is selfish and narrow-minded, as well and limiting to the parent-child relationship and the child’s development. I agree with the need for those with autism to have allowances, accommodations, ways and places to be in the world. Education of the public regarding the rights of those with autism is sorely needed.

I applaud the work and feel that the neurodiversity perspective is a necessary part of public education and awareness, but I wish the perspective did not require a scapegoat to secure the strength of its message. Parents benefit from such guidance to a point, but not the accompanying pressure and judgment.

Words cannot define the overwhelming love I feel for my son, and no “perspective” will tell me that I am not acting in his best interests, and that I as his parent, am in the appropriate position to do so.

Finally, I fully and unconditionally love and accept my son (and always will), and I want the very best education and treatment for him. The two concepts are not mutually exclusive.

Marni Wachs
Winnipeg, Manitoba

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TAAAPP - Autism's Confused Anti-Cure, Anti-Parent Movement

Despite the increasing body of knowledge revealing the neurological bases of autism, despite the fact that people who call themselves autistic either have, or are adopting by self-diagnosis, a medical diagnosis which defines autism as a disorder, despite the severe self inflicted injuries which threaten the health and lives of some autistic persons, despite the lives lived dependent on others in various dependent residential care facilities and institutions there are those, particularly on the internet who claim that autism is not a disorder and should not be cured.

There are some in the autism anti-cure movement who acknowledge that it is a disorder, particularly when they are seeking disability accommodation from employers or the provision of government services, but who still say that autism should not be cured. Implicit in this perspective is an anti-parent theme which emerges fully when parents describe candidly and honestly the realities faced by their autistic children particularly the more severely autistic children. Speculating about whether historical figures such as Einstein or Van Gogh were autistic is fine with the anti-cure movement. Touting any autistic savant, or accomplished autistic persons like Temple Grandin is politically correct but woe to the parent who dares speak honestly on behalf of their autistic child.

An interesting example of The Autism Anti-Cure Anti-Parent Perspective which I will refer to by the acronym TAAAPP can be found at Autism is NOT a disorder that NEEDS to be CURED a blogsite operated by someone called Cathy who does not disclose her interest in autism other than her obvious admiration for Michelle Dawson. Cathy only began blogging this month and has only blogged once - "comments re Facing Autism in New Brunswick". This comment contains two of the themes which identify the TAAAPP, anti-autism cure and anti-parent and I reproduce it here in its entirety:

comments re Facing Autism in New Brunswick

I have read this article in which Michelle Dawson(autistic) is mentionned and Erin Anderssen (mother of autistic individual).

I guess my main frustration is that individuals such as Erin are looking to somehow modify their childs behaviour. We live in a society that unfortunately is not tolerant of individuals.

I believe that Autism is not a disease to be cured. When is society going to change their way of thinking and allow for all differences, not just acceptable ones.

As far as specialized clinic's and residential care, shame on you parents that give up and take the easy road out.

Erin maybe if you spent more time with your son, rather than trying to denounce Michelle Dawsons "Scathing remarks" as you so put it, you might be surprised at the outcome.

Apart from Cathy's anti-cure belief she also expressly articulates, in the highlighted comments the anti-parent hostility that underlies much of the TAAAPP and Neurodiversity ideology. She expressly denounces parents who seek specialized clinical care and residential living for their autistic children. I am not sure if Cathy intended to denounce Erin Andersson of the Globe and Mail, or if her comments were directed at me personally, but she again makes it clear that parents should not be weighing in on autism issues on behalf of their autistic children - unless of course they agree with anti-cure icon Michelle Dawson. Cathy's logic is, unfortunately, confused by any measure, but it is a clear and concise reflection of the confused logic of Autism's Neurodiversity and TAAAPP ideologies.

For Cathy's benefit though I will plead guilty, guilty to her charge of trying to modify my son's behavior. Guilty of trying to modify his behavior to prevent him from banging his head on the wall until he injures himself, guilty of trying to modify his behavior to prevent him from biting his hands, wrists and ankles. I plead guilty to trying to modify his behavior to prevent him from walking into automobile traffic unaware of the consequences. I plead guilty to advocating for government funded pre-school, evidence based, autism interventions for my son and other autistic children. I plead guilty to advocating for autism trained teacher aides, resource teachers and autism suitable modified learning environments for my son and other autistic children.

Cathy, I thank you for showing me how intolerant I am in imposing on my autistic son Conor my beliefs that he should enjoy as full, enriched and rewarding a life, with as much independence, as possible.

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