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...

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

In a February 2007 American Journal of Public Health article, "Framing the Public Health of Caregiving," Ronda Talley, PhD, MPH, and John E. Crews, DPA, contend that "surprisingly little attention has been focused on framing caregiving from a public health standpoint." (quoted from the Family Caregiver Alliance)

I had always envisioned a family caregiver as someone typically dealing with a hospice or perhaps an eldercare type of issue-- Alzheimer's, Parkinson's, stroke, dementia. But in our case, Asperger's Syndrome never impressed me as a matter requiring me to be a caregiver as the wife of an AS (Asperger's Syndrome) individual.

I realize now that my line of thinking was representative of the big-huge identity crisis going on in the field of autism advocacy. American TV viewers have recently seen Jenny McCarthy on Larry King and Oprah, and the media images of her cute-blond autistic toddler might come to our mind's eye as we consider the burdens of those who lovingly and sacrificially take care of autistic family members.

My autistic husband is 51, and while I still think that he's cute, it is not endearing to face his unemployment and my frustrations about the daily tasks that he struggles to perform.

We've tried to get some additional vocational training and developmental skills services for him, but because he's an adult, and because I am considered to be his guardian/caregiver, he falls into a gaping hole in our regional social services safety net.

I should know. I spent six years looking for services and they don't exist in our state... read part two