Don't Mourn For Us

The following is an excerpt from a presentation Jim Sinclair gave at the 1993 International Conference on Autism.  Jim is Autistic. 

"Autism is not death.  Granted, autism isn't what most parents expect or look forward to when they anticipate the arrival of a child.  What they expect is a child who will be like them, who will share their world and relate to them without requiring intensive on-the-job training in alien contact.  Even if their child has some disability other than autism, parents expect to be able to relate to that child on the terms that seem normal to them; and in most cases, even allowing for the limitations of various disabilities, it is possible to form the kind of bond the parents had been looking forward to. 

But not when the child is autistic.  Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child.  This grief is very real, and it needs to be expected and worked through so people can get on with their lives- but it has nothing to do with autism...It isn't about autism, it's about shattered expectations.  

I suggest that the best place to address these issues is not in organizations devoted to autism, but in parental bereavement counseling and support groups.  In those settings parents learn to come to terms with their loss- not to forget about it, but to let it be in the past, where the grief doesn't hit them in the face every waking moment of their lives.  They learn to accept that their child is gone, forever, and won't be coming back.  Most importantly, they learn not to take out their grief for the lost child on their surviving children.  This is of critical importance when one of those surviving children arrived at the time the child being mourned for died....

That isn't the fault of the autistic child who does exist, and it shouldn't be our burden.  We need and deserve families who can see us and value us for ourselves, not families whose visions of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams.  But don't mourn for us.  We are alive.  We are real. And we're here waiting for you..."

- Jim Sinclair