The Realities of Severe Adult Autism Challenges: Out of the Spotlight and Out of Mind

Dr. Temple Grandin has accomplished much in business, and on the lecture circuit, and deserves applause for her accomplishments.I do not doubt that Dr. Temple Grandin has done much for autism awareness generally over the past 12 years since my son was diagnosed with Autistic Disorder. But awareness of the realities faced by severely autistic adults has not increased noticeably over that time and to some extent has been obscured by Dr. Grandin's accomplishments.  Dr. Grandin is an exceptional person of exceptional accomplishment.  The key word is exceptional.

Claire Danes is receiving acclaim for portraying Dr. Grandin.  And there ends public knowledge of adults with autism disorders.  For many in the public Dr. Grandin, as represented by the beautiful Ms. Danes is the face of autism.  Ms Danes is a talented and beautiful woman, by any measure, but the reality of autism is not so beautiful and the reality of severe adult autism is in fact brutally ugly with many  severely autistic adults living their lives in institutional care and ignored, except for brief flashes, by media and public.

The media gets involved, as it did recently,  in the case of the Nova Scotia autistic man who was kept locked in his room for weeks where he was, despite camera surveillance, left by staff to urinate in a corner. 6 years ago an autistic New Brunswick youth was kept on the grounds of a youth correctional facility despite not having committed an offense or not having been charged with an offense because there was simply no where else to keep him.  He was shipped out of the country to a US facility. Years before that an adult New Brunswick man was kept in a psychiatric  facility before being shipped out of the country to the Spurwink facility in neighboring Maine in the US. The headlines fade, as they usually do, and there is no movie or book industry or interest group lobby to keep the ugly realities of life for severely challenged autistic adults in the public mind. And little, very little, changes for those autistic adults for whom even one of the  most basic of decencies,  a pot in which to pee, is not always assured.

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On World Autism Awareness Day Respect Parents of Children with Autism Disorders

On World Autism Awareness Day respect the parents of autistic children and remember the role they play in helping their children realize their fullest potential in life.

From the days of Bruno Bettelheim when mothers of autistic children, based on one man's musings, were blamed for causing their children's autism disorders by being cold and lacking affection for their children, to the present, parents of autistic children have been vilified. Today anti-cure ideologues attack parents of autistic children for trying to treat and cure their own children.

Parents who speak openly about the negative realities of their children's autism disorders are condemned by the ideologues who praise autism disorders as a natural variation. Parents of autistic children concerned about the safety of what is injected into their children are mocked and ridiculed, behavior condoned and joined in by vaccine patent holders and ill informed journalists alike. Parents of autistic children who tantrum publicly are scorned as bad parents by ill informed strangers in shopping malls. Parents of autistic children are perhaps the only set of parents who have ever been so vilified by so many for trying to fulfill their responsibilities as parents and care for their children. Today the attacks continue albeit disguised under other labels "anti-vaxxers", "autism advocates", "behaviourists" etc.

Why whine about attacks on parents of autistic children instead of focusing on the children themselves in this post? Because, it is parents, with some exceptions, who protect and advance the interests of autistic children. Not advocates on behalf of abstraction, on behalf of a medical disorder generally.

When Ari Ne'eman says "we don't want to be cured" of our autism who is he representing? He is not representing my son with autistic disorder. I do that. Ari Ne'eman, Michelle Dawson, Amanda Baggs, Jim Sinclair, none of these people represent my son. None of them cleaned his butt as a baby, went to work each day to provide for him, took him to the hospital to have his fractured arm taken care of or to have dental filling work done. None of them got out of bed when he screamed at night or take him to school every day. They do not laugh with him every day, walk the trails with him in Fredericton, New Brunswick, or rise with him every day to hug him and watch the 7:10 sun.

It is parents who represent our children, protect them and advocate for their best interests. We are not advocating for an abstraction, we are not advocating on behalf of "autistics", whatever is meant by that expression when used by people who claim to be autistic but claim that autistic disorder is not really a medical disorder. Attacks on parents advocating for their children with autism disorders are attacks on autistic children by attacking those who protect and advance their children's interests.

The UN Declaration of the Rights of the Child, 1959, stated:


Principle 7

The child is entitled to receive education, which shall be free and compulsory, at least in the elementary stages. He shall be given an education which will promote his general culture and enable him, on a basis of equal opportunity, to develop his abilities, his individual judgement, and his sense of moral and social responsibility, and to become a useful member of society.

The best interests of the child shall be the guiding principle of those responsible for his education and guidance; that responsibility lies in the first place with his parents.

The child shall have full opportunity for play and recreation, which should be directed to the same purposes as education; society and the public authorities shall endeavour to promote the enjoyment of this right.

The responsibility for the best interests of autistic children lies in the first place with his or her parents. Attacking parents of autistic children, in most cases, will be nothing more than an attack on the autistic children for whom they are responsible.

On World Autism Awareness Day I ask that you respect the role and responsibility of parents in representing their autistic children's best interests.

autism

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