@alh - I have thought of writing a book. The market is actually quite limited for stories such as mine, though, and far better writers than I have written accounts of living this type of life and gone unpublished, having been told by publishers that the market can only support a very occasional story of this kind among parent-authored stories of success and recovery, guides to interventions, accounts by high-functioning people with autism, and overviews of the history of autism.
I would suggest that anyone interested in how families might respond to this level of autism begin with Boy Alone (Karl Taro Greenfeld) or Far From the Tree (Andrew Solomon) or take a look at films such as The Black Balloon (Australian.) There are others, but these are my favorites.
A family with a teen who hopes to find a career working with this population might look for an opportunity for the young person to get paid as a mother’s helper in a family such as ours. We hired several, and a few have gone on to become professionals working with this population. Others might expect at some point in their lives to care for a disabled or elderly relative such as a parent with dementia, and still others have said that much of what they learned is very much applicable to more typical situations.
There is also the matter of privacy for my family and extended family, especially since few are self-employed or retired, and that of professionals who worked and negotiated with us with the trust and expectation that meetings would remain private. Years ago my lawyer suggested that I turn to fiction as a vehicle of discussing some of these issues, but I would not have the skill.
There is still the mountain of paperwork that families such as ours tend to accumulate, including professional evaluations, some boiler plate and some thoughtful, old iep’s mostly boilerplate but some ghost written by myself when special educators were willing or able to be cooperative but did not know where to begin, invoices from professionals, daily logs sent home from school with my responses, correspondence from agencies, schools, and attorneys, data sheets from our home program, notes taken at conferences, and progress reports from private therapists. For years, I also found a release through a personal journal. Quite a bit of it seems quaint and dated, in light of changing fads in autism treatment.
It is mostly in hard copy. I am going through this and wondering how much I should leave for my other children to examine through mature eyes, whether I should attempt to pass it on to a graduate student looking for a dissertation topic, whether I should annotate with what I have learned in hindsight, or whether I should shred because it would cause more pain to family members, or as part of my overall campaign to lighten up our load of possessions in preparation for downsizing.