(At the end of the rebroadcast, Dick said that I had "spoken to the Cherokee Nation" [or words close to that]. What I actually did was speak to a roomful of people at a meeting hosted by the Eastern Band of Cherokee Nation. So I wasn't on a hillside, addressing the multitude...)
The studio interview lasted two hours, and was edited down to a bit less than an hour for broadcast. There were things I wish I had presented more clearly, and items from my prepared notes which we didn't get to. I'd like to address those here.
My experience serves as a reminder that things do not have to go ideally for an autistic person's life to turn out well. There are many differing voices having recommendations for dealing with autism, and some of them speak forcefully of a "window of opportunity" beyond which a child is somehow "lost". Well, I could be spoken of as being in many ways "lost" for decades, but that changed once I was diagnosed and began getting a better understanding of why my nature is as it is, and receiving understanding and support from organizations like TEACCH and ASNC. I became more accepting of my limitations in, for example, social interactions, and began to pursue interests in my areas of strength, such as writing and studying sociology.
So if an autistic child is struggling terribly, that is their present situation but not their destiny. Growth of skills and interests can easily continue well into adulthood. Quality-of-life can be understood as things being possible rather than easy, and the reassessment of what is important/meaningful can be a transformative experience for those around the autistic person as well as the individual him/herself. In cases where there is self-injurious or destructive behavior, caregivers may not feel that anything I say could be useful - the outside appearences are too different. I talk about frustration (or, sometimes, go into isolation) instead of acting it out, but the feelings are still there. Words are communication, and so is behavior. Both can be learned from.
The Moody Blues song "The Balance" is from their album "A Question Of Balance" and is a two-part poem with a musical interlude in the middle. The program used the first part an an example of what being autistic is like; I would amend that slightly. It is what being autistic can be at times. In the midst of an emotional or sensory "meltdown" I don't always think of myself in balance! But once the distress is taken care of, the sense of being in balance returns. The second part of the poem barely begins when the song is faded out. That part describes a profound awakening which leads to feelings of compassion and love for others. I invite those interested to search for the lyrics online or (better) to buy the album for themselves.
My bicycle is a RANS Fusion - more information is available here. See why Dick struggled to describe it? :-)
Regarding my poetry, I spoke of the challenge of finding the right rhyming words, but most of what was read didn't rhyme at all. Some of my other poems rhyme, honest...
In my description of therapeutic foster care, I neglected to mention that it is a voluntary placement, and that parental rights are preserved.
Andrew's social skills have indeed been helped by his living in his extended family. But he has always been more outgoing that either his mom or myself - many times in the early years we would look at each other and ask, "Who did he get that from?"
The hypothetical "cure" discussion is something I addressed at greater length in my ASNC Conference address, elsewhere on this site.
And a favorite saying, author unknown: "If our minds were so simple that we could understand them, then we would be so simple that we could not understand them."
Last updated: June 22, 2007