Invisible Autistics and Severe Autism Awareness at Interaction in Mind
Posted Aug 21 2009 10:31am
Severe autism awareness is the focus of a new photography oriented autism site called Interaction in Mind.
I have written often about the lack of attention paid to those on the severe end of the autism spectrum, the invisible autistic persons whose autism challenges do not permit them to create orchestrated videos about stimming as a language or to appear before courts and political forums seeking to prevent autistic children from receiving ABA treatment. Unbeknown to the mainstream media (with the exception of the Vancouver Sun as shown in its excellent series Faces of Autism ) there are severely autistic children and adults who can not communicate with or without any assisted technology device. There really are autistic adults living in institutional residential care for the rest of their lives. I have visited institutional facilities and seen autistic adults in care. The mainstream media, by and large, has not.
Even in research the focus is almost entirely on High Functioning Autism. Some prominent "autism experts" like Dr. Laurent Mottron routinely publish 2-3 papers a year on autism studies ... involving High Functioning Autism participants. Far fewer papers are published which focus on studies of persons who are more severely affected by autism, persons with Low Functioning Autism.
Blog sites are little better and often times worse. Almost daily the Autism Hub bloggers, persons with High Functioning Autism or Aspergers, family members and even professionals exhort parents and bloggers to speak "Posautively", or positively, about autism spectrum disorders. One enterprising autism parent blogger even organized a Twitter day dedicated to tweeting about the positive aspects of autism. Another well known Canadian blogger likes to gush about the joy of autism while criticizing parents of severely autistic children who seek to treat or cure their autistic children. What all of these efforts do is seek to whitewash the realities of autism. What they do is create a sub-class of invisible autistics whose autism challenges can not be mentioned honestly without being accused of creating negative stereotypes of autism.
There are signs though that a more realistic, less ideological approach to discussing autism disorders is beginning to develop. Jonathan Mitchell, autism's gadfly, Jake Crosby at Age of Autism and Stephanie Lynn Keil are all persons with autism spectrum disorders who refuse to glorify autism disorders, who try to write honestly about autism and the restrictions it can impose on the lives of those affected.
Interaction in Mind, a photography oriented web site created with the express aim of raising awareness about severe autism, is a promising new development. I am not sure how the site creator will raise severe autism awareness with a photography oriented site. As a father of a severely autistic son I post many pictures of my son at his best, enjoying life. I have posted some pictures of my son's hands showing self inflicted bite marks or pictures of broken windows. But for the most part my photographic efforts have presented the joy I find in Conor each day. It is difficult to take pictures at some of the more challenging moments when matters require complete attention or even to post the pictures of some of the results which can remain afterward.
The idea of raising awareness of severe autism at Interaction in Mind is excellent. The challenge for a photography oriented site will be to include some of the negative realities that characterize severe or Low Functioning Autism in a world where people would rather see "feel good" representations of reality instead of harsher truths. It will not be easy but it is a step forward just to see a web site dedicated to raising awareness of severe autism. I wish every success for this very worthwhile and promising project.