I want to become an advocate for old people like me who spent most of their life not knowing about their autism and wondering why they were such misfits, outcasts, social failures, troubled souls, in so much pain and anxiety, and being blamed personally for all of it.
I saw my mother in a nursing home suffer a thousand emotional and painful incidents which may have been eased or completely removed by understanding her autism.. How wonderful if we had understood she had autism in her lifetime, and not in “hindsight” once I recognized my own autism? I Like to think that staff and family both would have more alternatives in how to deal with behaviors and frustrations, hurting souls and bewildered minds, both theirs , mine, and hers.
I hope to speak for the undiagnosed folks in senior citizens groups, old folks homes, clinics, and in every other situation that might become available to raise awareness of the “lost generations” of autistic folks unknown, misunderstood and frequently suffering among all of us.
OK, I decided to try to find out “officially” if I had autism when I decided I wanted tob become an advocate. I have recognized that to be considered credible to the public I need to have that certificate stating “officially” that I am autistic.
I started asking other autistic people on the forums i frequented, how did they become diagnosed? I started paying attention to how others writing blogs got diagnoses. I started seeing out information on informational pages for autism groups… how do I find somebody to give me a diagnosis? I learned it is very difficult to get a diagnosis as an adult in the USA. In other countries, the experience may be very different, or even worse than the “systems” used here.
Many people said they were recognised as autistic first by a family member who knew about autism or a teacher of an autistic child , had an autistic sibling or autistic offspring. Many blogs today are written about getting diagnosis as an “older person” in their 20s and 30s…. I found only one blog by a man who was diagnosed in his late 50’s, and only a handful of women older than that.
All suggestions start off by recommending referral by one’s own GP to a qualified psychologist or neuro psychologist. Some suggest asking an autistic friend to refer you to whoever the person was who diagnosed them. Some explanations on how to get a diagnosis end with the subjects (particularly women) saying they were instead diagnosed with multiple mental illnesses but not autism.
I have read so many comments and blogs about how teenage through 20’s girls through older women (in their 30s and even older) telling how they were given diagnoses unrelated to autism, and told they could not be autistic because they could communicate, they could apply for and hold jobs, they could have relationships with others, they could feel sympathy, they made eye contact, or they did not show obvious stimming behavior.
I have a very difficult time communicating with my GP and felt chastised and shamed in my first few contacts with her, so instead of approaching her about my possible autism, I decided to seek diagnosis through self referral. First I looked for psychologists within the medicine network of my GP, in town (none) and at the clinic’s home base in a large city about 4 hours south of here. Nothing… not many psychologists in the system and the only one which mentioned autism at all would not accept patients over age 18.. OK… ( to be continued)