Do you hate asking for directions as much as I do?
When I'm getting ready for a road trip somewhere, I make sure the trusty atlas is in the back pocket of my car seat, and I check my favorite online map websites for the quickest and most direct routes. Making good time is always my goal--it's a silly but engaging game to make the best time possible without breaking too many speed limits!
Finding the road map for living with Autism has been much more difficult. When Bruce was diagnosed, we were still using a dial-up internet modem at 28k, and navigating the web for support information about Asperger's Syndrome was slow and frustrating.
I did notice that most of the information was for parents. Everybody was encouraging parents to pursue early diagnosis and early interventions to help in educating their autistic kids.
And while I really appreciated the importance of this info, I felt left out. There was almost nothing about 'having an autistic husband' or 'how to handle the emotional isolation' that I was experiencing.
So, I've been on this long road trip--six years of trying to find a community of folks to relate to, and quality resources to help me deal with the varied and all-encompassing responsibilities I have.
High-functioning adults who, later in life, are diagnosed on the autism spectrum don't have much in the way of services in the U.S. At least not yet. I recall feeling that it would have been great if there had been some map to guide us in the process of grief- anger-acceptance that we've stumbled through.
I've learned a lot --probably more than I really ever wanted to know about Asperger's Syndrome! The biggest deal for me was letting go of being afraid to ask questions. No question is too dumb to check out and when I ask others to help me, I usually learn about new advocacy groups and new ways of viewing Autism. I even learned that I was an Asperger's individual myself!
Everybody has their favorite way to travel. Some of us want to get there quickly, others can just ride along and enjoy the scenery. In my case, I've hit a lot of holes in my road!
Perhaps this might help some of you-- in the coming weeks keep checking back. I'll be adding some of my favorite support groups and websites for adults and family members who are dealing with Autism.
Maybe then, you'll make better time than I did.
