By Francesca Bierens; 187 pages. Subtitle: Inspirational Interviews With Families Affected by Autism
After short chapter introductions, Francesca Bierens lets the parents interviewed here speak for themselves and their families, in vignettes on a variety of subjects, including developmental differences, family issues, inclusion, acceptance, and children's unique gifts. The overall message is that things may be hard, but they get better, and parents get better at coping. That's a nice break from the usual horror stories and controversial cures.
- A nice, light, inspirational read.
- Subjects discussed are those most of interest to the daily life of parents and families.
- Revisiting families fourteen years later shows modest but gratifying progress.
- While generally upbeat, acknowledges the pain of diagnosis and exclusion.
- Sends a useful message that life goes on after a diagnosis, and parents can cope.
- Not a book to look to for practical information and specifics on what to do.
- Probably most inspirational for families of young children with autism, just starting out.
- With block after block of short mixed quotes, it's hard to follow individual families' stories.
- Photos of families would have been a nice way to personalize the quotes and involve readers.
- Some may find that the interviews do not at all reflect their own experience of autism.
- Introduction
- Chapter 1: "Life does get easier"
- Chapter 2: "We're a family. We go where she can go"
- Chapter 3: "We are not going to hide our children away"
- Chapter 4: "You can't try and rush them"
- Chapter 5: "We've been able to gradually expand his environment"
- Chapter 6: "We respect her right to be different"
- Chapter 7: "You need to have somewhere to offload"
- Chapter 8: "She is so funny and so mischievous"
- Chapter 9: "He's gone way beyond functioning in society -- he's now excelling"
In 1994, Francesca Bierens interviewed ten families whose children with autism ranged in age from two years to thirty years. Their responses fill this book, shedding light on many different areas of parenting a child on the spectrum. Unlike many personal memoirs that depict autism as torture or as something to be miraculously cured, the message here is more along the lines of "It's not that bad, it gets better, it doesn't go away, but it is what it is." Though the stories do include accounts of anger over the original diagnosis, abandonment by family members, frustration with school personnel, and inter-family tension, the overwhelming mood is one of love for these quirky kids and unconditional acceptance.
As one of the parents interviewed, listed only as "Mother of Eleanor," puts it: "It's as if you've been put on a tremendously fast racing river and you've been in a very comfortable ocean liner, so you haven't really noticed the river much. Then suddenly the ocean liner crashes and you're left with a piece of wood to float on down this awful river. Then bit by tiny bit, you get other pieces of wood and you make a tiny raft for yourself. And that's a bit more comfortable and better than what you had before. Every once in a while bits fall off the raft and you have to start again but it's never quite the plank of wood you started with; it never gets that bad again. That's how I picture it and it gives me some comfort to realize the progress we have made."
That progress is particularly apparent in a smaller section of interviews conducted fourteen years later with seven of the same families, who reflect on the ways that life keeps going on. Two of the adults with autism speak for themselves. Problems have not magically vanished, but they are lived in, and become just a part of family life. Mindful of the horror stories they heard after diagnosis, these parents seek to let those just starting out know that things aren't as hopeless as all that. And that's a good thing, because one area where there does not seem to have been progress in fourteen years is the sensitivity and helpfulness of diagnosing professionals. With support organizations like Autism Speaks also eager to paint autism as a fate worse than death, the relative calmness and peace of these interviews provides some welcome perspective.
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