Much of the media coverage of autism disorders focuses on "autism is beautiful" ideology promoted by some, not all, persons at the high functioning end of the autism spectrum, those with high functioning autism and Aspergers. The alleged Autism Self Advocacy Network led by a very intelligent high functioning young man with Aspergers, who was only diagnosed with that disorder as an adult, has no problem promoting its views on the Canadian public broadcaster CBC and other major media outlets. Rarely are the realities of autism disorders for the severely autistic brought to public attention.
When the day comes that a CBC reporter leaves his or her cushy office confines and travels to a mental health care institution to observe the realities of severely autistic people living their lives in institutional care I will be very, very impressed. But I am not holding my breath waiting. And I am not sure they even know that the severely autistic exist in such circumstances to begin with. It is much easier and appealing for the journalism autism dilettantes to promote the "positively autistic" agenda and ignore brutal autism realities.
Parents of severely autistic children do not share with reporters at CBC, the New Yorker magazine, and other such media the luxury of autism ignorance. For us autism reality is part of daily life as it was yesterday when we visited the hospital with Conor for a pre-operative appointment. The appointment was to ask questions about Conor's health and have a doctor examine him prior to dental surgery later this month. The actual time with the examining doctor was very brief but after checking in at the appointed time, 8 am, we had to wait another hour before the doctor could see Conor. That hour was no pleasant for Conor, for us, or for those who were also waiting.
During the hour long wait Conor grew increasingly frustrated and agitated. His routine was disrupted. Ordinarily he would be heading to school which he loves. The hour wait was difficult for him and he grew very agitated, screaming, biting his hand several times and at times pulling my hair and pinching my face.
I am not complaining about the hospital staff or arrangements. People at the hospital did the best they could. The doctor had been delayed by a meeting that went on longer than expected. When he arrived he did the examination as quickly as possible knowing that Conor was upset. The staff were very helpful and sympathetic. A nurse went and obtained a popsicle for Conor which helped.
Nor am I complaining about Conor's behavior. In the past he has enjoyed "hospital adventures". Yesterday he did not. Yesterday, for one hour, Conor lived in hell. His behavior did not arise from "being bad" or "misbehaving". It arose because he has a serious disorder, Autistic Disorder, with limited ability to deal with circumstances beyond his control. Yesterday, for one hour, his Autistic Disorder hurt him.
That was autism reality yesterday for Conor. I love him dearly. Conor brings me tremendous joy every single day. I refuse to bend to the "autism is beautiful" propaganda spewed by a self centered group of people with little knowledge of the realities faced by my severely autistic son and who share no common reality with him; yet pretend, falsely, to speak on his behalf.
And I despise the lazy, incompetent journalism that promotes the agenda of the fortunate and ignores the reality of the unfortunate ... the severely autistic like my beloved son, Conor.
When the day comes that a CBC reporter leaves his or her cushy office confines and travels to a mental health care institution to observe the realities of severely autistic people living their lives in institutional care I will be very, very impressed. But I am not holding my breath waiting. And I am not sure they even know that the severely autistic exist in such circumstances to begin with. It is much easier and appealing for the journalism autism dilettantes to promote the "positively autistic" agenda and ignore brutal autism realities.
Parents of severely autistic children do not share with reporters at CBC, the New Yorker magazine, and other such media the luxury of autism ignorance. For us autism reality is part of daily life as it was yesterday when we visited the hospital with Conor for a pre-operative appointment. The appointment was to ask questions about Conor's health and have a doctor examine him prior to dental surgery later this month. The actual time with the examining doctor was very brief but after checking in at the appointed time, 8 am, we had to wait another hour before the doctor could see Conor. That hour was no pleasant for Conor, for us, or for those who were also waiting.
During the hour long wait Conor grew increasingly frustrated and agitated. His routine was disrupted. Ordinarily he would be heading to school which he loves. The hour wait was difficult for him and he grew very agitated, screaming, biting his hand several times and at times pulling my hair and pinching my face.
I am not complaining about the hospital staff or arrangements. People at the hospital did the best they could. The doctor had been delayed by a meeting that went on longer than expected. When he arrived he did the examination as quickly as possible knowing that Conor was upset. The staff were very helpful and sympathetic. A nurse went and obtained a popsicle for Conor which helped.
Nor am I complaining about Conor's behavior. In the past he has enjoyed "hospital adventures". Yesterday he did not. Yesterday, for one hour, Conor lived in hell. His behavior did not arise from "being bad" or "misbehaving". It arose because he has a serious disorder, Autistic Disorder, with limited ability to deal with circumstances beyond his control. Yesterday, for one hour, his Autistic Disorder hurt him.
That was autism reality yesterday for Conor. I love him dearly. Conor brings me tremendous joy every single day. I refuse to bend to the "autism is beautiful" propaganda spewed by a self centered group of people with little knowledge of the realities faced by my severely autistic son and who share no common reality with him; yet pretend, falsely, to speak on his behalf.
And I despise the lazy, incompetent journalism that promotes the agenda of the fortunate and ignores the reality of the unfortunate ... the severely autistic like my beloved son, Conor.
autism
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