Summary:
“Don’t Mourn For Us” by Jim Sinclair, was an article that was published in the Autism Network International Newsletter, Our Voice, Volume 1, Number 3, 1993. The article was original presented as a speech at the 1993 International Conference on Autism in Toronto. The primary audience for the article are the parents of those with Autism, particularly, those parents who have just found out their child or children have autism. The points Sinclair makes in the article are as follows: 1. Autism is not an appendage – it is not something that the child can shrug off like a piece of clothing, but an essential part of their character. Removing the autism from the child would fundamentally change who that child is. 2. Autism is not an impenetrable wall – children with autism have difficulty connecting to people without autism, and visa versa, but if you give a concerted effort to understand your child with autism, they may let you in, in time. 3. Autism is not death – the autistic child is what the parent’s got. They can grieve for “their dreams” of a child just like them, and except that they will have to connect with the child they have, someone who – in sinclair’s words – is an alien in a strange land, and the parents’ job is to represent the child to the normal world.
Notable Quotes:
“This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.” Pg. 1
“Some amount of grief is natural as parents adjust to the fact that an even and a relationship they’ve been looking forward to isn’t going to materialize. But this grief over a fantasized normal child needs to be separated from the parents’ perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity.” Pg. 1
“Each of us who does learn to talk to you, each of us who manages to function at all in your society, each of us who manages to reach out and make a connection with you, is operating in alien territory, making contact with alien beings.” Pg. 2
“You didn’t lose a child to autism. You lost a child because the child you waited for never came into existence.” Pg. 3
Reflections:
I can understand the feeling of these parents and what the author, Jim Sinclair, is trying to communicate. I have a brother with high-functioning autism. Though he can talk and communicate and is physically capable, he has the mental aptitude of a young child, so he needs constant surveillance and care to ensure he doesn’t get into trouble. I have had those feelings where I wished he wasn’t autistic and that I didn’t have to worry about what he would get into or where he’d run off to when I’m not looking. But I do love my brother and I have to admit that my brother would not be the same without that part of his character, even though I may find it annoying or troublesome, I can’t think of him in any other way.