Thursday, May 17, 2007
Autism Reality - The Truth, the Whole Truth, Must Be Told
Deborah Pugh is a journalist and mother of an autistic son who has been crticized for speaking publicly about her son's challenges, specifically his autism and the challenges presented by puberty. She has written an article on this subject in the Vancouver Sun which follows this comment. Puberty, like infancy and old age are merely stages which all humans, if they are fortunate, pass through on life's journey. Puberty, like these other stages, is nothing to be ashamed of and there should be no problem with discussing the challenges it presents in a respectful manner. Censoring discussion of such a subject is what creates shame and leads to an incomplete and distorted picture of the realities of someone with autism who is undergoing puberty.
Pete at "A Perfectly Cromulent Blog" has touched on the decision a parent must make - remain silent or advocate publicly with public comments about your autistic child. With this blog site I have obviously chosen to speak publicly about my son, Conor, his severe autism, the joys AND the challenges of living with and raising Conor, our hopes AND our fears for his future. A major reason for the user name I employ "AutismRealityNB" is my perception that the internet is full of joy of autism sites and sites about high functioning autistic persons who have the ability to host blog sites, write lenthgy essays, appear before government committees, intervene in court proceedings and otherwise function and communicate at a very high level. They are joined by some parents and professionsals who condemn parents like those in the Autism Every Day video who tell the whole truth of their child' autism realities. An uninformed reader of the Wikipedia List of People with Autism should be forgiven for thinking that autistic persons are all artists, poets, authors and researchers. On the internet there is rarely to be found any mention of the darker realities of autism, those who lack basic communication skills or live in institutional care. Without such mention the lives of the severely autistic can become invisible to the world, forgotten. Reality is not always a welcome guest on the internet world of autism.
Ms Pugh's article follows and I thank her for having the courage to speak up and to describe some of the realities of autism and the challenge of puberty for an autistic person.
Autism criticisms are counterproductive
Deborah Pugh, Special to the Sun
Published: Thursday, May 17, 2007
Lauren Brown's letter of May 7 criticizing my willingness to talk of the challenges of puberty and autism, and to allow my son to be identified, spoke more to her sense of shame around sexuality and disability then to my son's reality.
To our family it is not a source of shame that he is an adolescent with all the physical manifestations that brings. Nor is it a source of shame that he has autism.
Perhaps if Brown were to re-read Pete McMartin's excellent reporting more carefully, she may become more aware of my son's limited awareness of or concern about the opinions of his peers. If he had a higher level of awareness, then he would not have been identified.
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As someone who has worked as a journalist for 20 years and as an advocate for families of children with ASD for 12, now for ACT -- Autism Community Training -- I took this opportunity to speak openly about the reality for so many of our families because there are many children on the spectrum who would be embarrassed about this reality and many families who find it too difficult to discuss.
I have had many direct responses to McMartin's excellent piece, largely from other families, all of which have been grateful that I was prepared to speak honestly and with humour.
Criticizing the decision of families to discuss their challenges in the press, as they see fit, whether it is Brown's patronizing critique of the piece that I contributed to, or the superior finger-waving that letter writer Debra Antifaev resorts to in criticizing parent Cyndi Gerlach, is counterproductive if their real aim is to support the diversity of family experiences and the desperate need for better services.
Doubtless I have many limitations as a parent, but I am not sure that Brown is in any position to give lectures on advocating for children with autism.
Perhaps next time she feels so strongly about our children she could write a letter to the editor calling on government to adequately fund rapid diagnosis, equal access to excellent treatment regardless of age, and proper supports to all families struggling to raise families of children with disabilities -- regardless of diagnosis.
In closing I would like to thank The Sun for having the courage to delve into these delicate issues in depth and to do it without sentimentality. McMartin is to be congratulated for an excellent series which is sensitive to the extremely complex reality of our families.
Deborah Pugh lives in Vancouver.
© The Vancouver Sun 2007