Thursday, July 17, 2008

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

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


Lisa Jo Rudy said...

Thanks, Marni! I find it fascinating that even ordinary parental rules (do this bad thing and receive a consequence/do this good thing and receive a reward) is now being seen as a form of ABA - and thus, in some cases, as problemmatic.

Seems to me that if I allowed my children to just grow naturally, we'd be living in a real-life "Lord of the Flies" world!

Bottom line, parents ARE responsible for teaching and even training their children to manage the world and themselves. When we DON'T do it, we're doing our kids a disservice (not to mention everyone around them!).

If that's ABA, I guess I'm all for it... though I am just as strongly in favor of the more creative, humanistic sides of parenting which include helping our kids to explore their artistic, spiritual, and altruistic natures - something that ABA can't easily do.

That goes, by the way, for all our kids. ASD, NT, and everything in between.

Lisa ( guide to autism)

hopefaithbelieve said...

I love and accept my beautiful son and fortunately, after dietary and biomedical intervention (ABA, too), he is able to love me back by telling me, "mommy, I love you"...something he was unable to do just a few short months ago.