Caregivers-- Who Takes Care of Us? (part two)

Being married to me, my husband is just not on the radar for any services that will benefit him--even though he only received diagnosis six years ago-- even though he hasn't had a single minute of the years of intervention therapy that behavioral therapists state is crucial to most individuals on the autism spectrum.

Strangely, as his caregiver, I am even more invisible than he is. As I surfed the web looking for answers, there was nothing out there referring to spouses of autistic adults. Many sites welcomed 'parents dealing with autism', and I felt totally displaced. Clearly everyone thought that I shouldn't be married to an AS guy--he needed a mom not a wife!

When Nashville's Vanderbilt University Child Development Center agreed to take him on as a client (never mind the toddler toys in the waiting room, and the cartooney wall art), we were so grateful for help that he didn't mind facing the embarrassment of going to a 'Child Development Center' (at that time, most adult therapists in our city had never heard of Asperger's Syndrome).

So, the psychologist met with us a few times. I felt at times that she was consulting with us because she was curious to 'see the married autistic couple'. We came out of there, armed with a small handful of suggestions--my husband was to keep a running list of his priorities and spend several hours each week self-evaluating which of his goals had been achieved, and I was to purchase and start using a bulletin board ("color-coded might help") and post schedules to keep him on task and organized.

Maybe she thought we were running a PTO fundraiser campaign!

Six years later, I have several moderately expensive, magnetic, dry-erase and compartmentalized schedule boards stored up in the attic. At least that psychologist tried to address my questions. In the years following her modest attempts, here's a sampling of what I've been told by various advisers and professionals in the field:

"Get out of the marriage--the drugstore's open so let's find a drug that will make him happy--you'll never get any of your needs met, and I have never met a spouse of an autistic person who did not get a divorce--all you can hope for is to find activities that will make him feel happy so he can enjoy his life more--just kill him and tell God later that you didn't do it (said in jest)."

Thankfully, none of this helpful input included advising that I kill myself, because there have been some bad days...