Change.org represents a progressive voice on many fronts but when it comes to children and adults with autism spectrum disorders it has chosen to embrace the regressive ideology of Neurodiversity (ND). The ND ideology is regressive on many fronts, it is inherently undemocratic in that adults with mild versions of autism disorders assert a right to speak on behalf of autistic children they do not know, some of whom are far more severely affected then they, by autism disorders. ND is also regressive in its opposition to cure or recovery from autism spectrum disorders, neurological disorders which impair the lives of many children and adults.
Change.org hired two ND bloggers, Dora Raymaker and Kristina Chew, both of whom subscribe to the " ND, autism can not and should not, be cured" manual. Ms Chew, although she is a parent who has recognized the serious deficits accompanying her own son's autism disorder by having him receive ABA therapy AND at least two autism targeting medications, frowns upon the notion of curing autism or recovery from autism. In "Recovery" from Autism: Fantasy and Reality Ms Chew again criticizes the idea of recovery from autism this time by a critique of The Horse Boy: A Father's Quest to Heal His Son,a recently published account of a father's apparent attempt to recover his son from autism by taking him to ride horses in Mongolia and visit with Shamans. Ms Chew justifiably critizes the bizarre notion that autism recovery could result from such activities. But she is not content to take a well deserved shot at Mongolian horse nonsense. She continues on with a rambling general attack on the concept of recovery from autism:
"I've yet to readThe Horse Boyto see what its covers hold so, beyond expressing my reservations about talking about "healing" a child from autism---because focusing on "recovery" from autism twists discussions in endless circles about causes and treatments, rather than about lifelong needs and supports and services---I'll just say that life as some mixture of light and loss and goodness and dark----that has been what our journey with Charlie has been like. There've been many epic moments when I felt I was witnessing about the grandest thing the universe could provide---Charlie riding his bikeon a street in a midsize north Jersey town, Jim pedaling proudly behind---and it's all been real, no fantasy, and the result not of magic but of hard work, of sweat, some tears, and love."
Kristina Chew has apparently abandoned the idea that her son with an autism disorder, who has received ABA, pharmaceutical and biomedical treatments for his disorder, will recover from his autism. I can understand the feelings that must bring about as he grows older, as my son is now 13, and realize that he will not be living an independent life. But I can not follow Ms Chew down the path of rejection of the concept of autism cure, treatment or recovery.
Cures might arrive with more research on causes of autism, a subject of which Ms Chew seems to be tired. If a safe effective cure or treatment can help my son in future I will want it for him. ABA was not generally available for Conor in his early years but has become available for him for several years because of determined advocacy by me and my fellow parents here in New Brunswick, Canada, because we had responsive , conscientious government leaders and because we had the assistance of some key academics and professionals who put together a unique program which has helped autistic children across New Brunswick. ABA does not mean recovery for Conor Doherty but it has meant acquisition of some important skills and in particular enhanced communication and reduced self injurious behavior. For some ABA might mean full recovery. For me Conor's gains, although not recovery, are enough to keep my spirits up and my hopes alive.
The studies and professional literature on autism interventions have been reviewed by such agencies as the American Academy of Pediatrics, the US Surgeon General, the NY State Department of Health, the Association for Science in Autism Treatment, the MADSEC (Maine) Autism Task Force and many others and these reviews of the literature indicate by means of various euphemisms, eg. "indistinguishable from chronological peers", that recovery is possible in some instances using ABA. These sources and the method they endorse, ABA, are much more informative than generalizations made from one person's experiences whether it be Kristina Chew's experiences with, and feelings about, attempts by her to recover her son from autism or my efforts with Conor which have resulted in some important gains for Conor, albeit far short of recovery. Because Conor is not near "recovery" though I do not attack the merits of others seeking recovery for their child from autism or the possibility that it occurs.
The Center for Autism and Related Disorders, Inc., which includes Doreen Granpeesheh Ph. D., who has had a formidable career actually helping autistic children recover from the negative realities of autism disorders, now has a blog site on which is posted articles and videos concerning recovery from autism. For examples of recovery, and informed balanced discussion of autism recovery, parents and the public would do well to skip past the anti-cure, ND pages of Change.org and visit the CARD blog site. The CARD people, unlike Change.org, are not ideologically opposed to autism treatment or cure. They have not given up on helping autistic children recover and they are backing up their ideas with action to actually help autistic children.
Recovery, according to some people actually dedicated to, and involved with, helping autistic children, is possible. Cures might be possible in future. Do not let a regressive ideology or one mother's fatigue and pessimism dissuade you from seeking to recover your child.
Avoid the horse and dolphin nonsense, for sure, but seek out credible, evidence based intervention and trained providers for your autistic child. And lobby your congressman or member of parliament to increase funding research into the causes of, and cures for, autism disorders.
Our children with autism disorders deserve our best, unfailing, and untiring efforts.
Do not, out of fatigue or fear, surrender to the ideology of defeat.