29 Marbles: Some thoughts on denial and an autism diagnosis (or: The end of the world as we know it)

When a parent experiences denial on receiving an autism diagnosis for their kid, I think it is important for them to understand what exactly they are in denial about. At first thought, it would seem obvious that they are in denial about their child having a "devastating disorder" (since I believe this is how most - not all - parents initially conceptualize autism). The proverbial "end of the world."

But is this really what they are in denial about? Or are these parents in denial about what the diagnosis means to them, to their expectations of the future and what it means to have kids? Or, in keeping with the theme, the "end of the world as they know it."

I recently came upon a couple of essays that capture this better than I ever could have hoped to. (As you read through these two essays - and I strongly encourage you to read each in their entirety - keep in mind that both were originally written more than 10 years ago. We've come so far, but still have a long way to go.)

From the essay Cure, Recovery, Prevention of Autism? by Phil Schwarz:

I think that most people who seek a "cure" for their loved ones' autism do so with the best of intentions: they see their loved ones having difficulty or inability to function, and want to help them overcome those difficulties or inabilities.

The statement "I wish my child were not autistic" implies, at least to me as a parent, and also as an inhabitant of the borderlands of autism myself, that the parent making the statement seeks a change in the inner essence of who the child is.

Would we feel as comfortable with the following statement, about equally fundamental stuff of which the self is made: "I wish my child were not female" ?

What is really going on with that latter statement? Being female is not considered, at least in the cultures that frown upon that statement, a disability, overtly at least. So why would a parent harbor such a feeling, even covertly?

I think because they had, and still have, unmet expectations. Perhaps a boy would be easier to relate to, to bond with -- especially for a father. Perhaps the family has no boys. Perhaps the parents really really wanted a boy....

Now go back to the statement "I wish my child were not autistic".

There is an incredible amount of devaluation based on low societal expectations about what autistic people can accomplish. Autism itself is still considered shameful by far too many. (especially parents, imo. -brett)

It is very much more difficult for most parents to lay to rest unmet expectations about neurologic typicality, and dreams based upon those expectations.

And from the essay Don't Mourn for Us by Jim Sinclair:

Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle.

But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents' attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child's actual development, cause more stress and anguish than the practical complexities of life with an autistic person.

Some amount of grief is natural as parents adjust to the fact that an event 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. Continuing focus on the child's autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.

I invite you to look at our autism, and look at your grief, from our perspective.