Pretending to be Normal: Living with Asperger's Syndrome, by Liane Holliday Willey, is a "my life with autism" account written by an older autistic woman, one of the generation before mine that had little-to-no supports or help unless they were deemed "completely disabled." She was not, and so she had to fend her way through life mostly alone. This is not a long book: less than 200 pages, almost 50 of that in appendices.
I've read Liane's work in the past, and actually met her in person during one of the DOD's yearly Autism Research Program conferences. She lives in the same state as me, perhaps a few dozen miles north, and has ties to the same entity that diagnosed me as autistic about a decade ago.
She is a very knowledgeable person, but like me, not a cheerful one. In reading this book, one can easily see the myriad of ways life has battered her down. In Japan, the saying is "the nail that sticks up gets hammered down." Meaning, that people who do not fit into proper social norms and expectations get pressured to conform until they do. This is particularly true in Japan, but even in a more individualistic culture like the US, it is still true. I have the depression and anxiety diagnoses to prove it.
I see a couple things of specific note in this account.
First, there is a certain pervasive negativity to her view of autism. I see this often with freshly diagnosed autistic people, those prone to depression, and parents that fit those categories or haven't been introduced to neurodiversity as a philosophy.
When I, and others, first receive our diagnoses, there is the tendency to hyperfocus on it, and blame it for everything we don't like about ourselves. The depression, the anxiety, the sensory differences, the low energy, even medical things like dietary sensitivities and gut dysbiosis.
This is part of what contributes to the confusion around what exactly is meant when someone says "autism," by the way.
Perhaps more importantly, though, it is inherently unfair.
Autism is not a collection of negative traits that serve only to disable a person. It is not "everything that's wrong with me/my child." It is a brain difference, and that comes with positives and negatives. Neurodiversity teaches us to celebrate those positives.
For example, I would say I am a very reliable human. If I say I'm going to do something, I do it. I am rarely, if ever, late to appointments. I don't make promises lightly, or say things I don't mean. I make efforts to be conscientious of others' time and energy. These traits are a facet of the autistic tendency to adhere to rules.
There are dozens of ways to spin that tendency negatively. "Rigidity" is one of them. "Change intolerant" is another. "Inflexible" is yet another I hear regularly. It's true that autistic people can have great difficulty shifting gears and accepting rule changes, and that can make our lives harder. Most recently my friend needed to reschedule my hair appointment due to a sudden change of schedule, and I was doing so poorly at the time that I quite literally couldn't face rescheduling it for a couple weeks.
Does my difficulty with sudden changes of plan negate the value of my reliability as a person? I don't think it does. Or I don't think it should, ideally. But in the course of communication, especially with parents and professionals, it basically does. The strength and value of my differences is ignored in favor of spotlighting my weakness.
It's a very cruel thing to do to people. Having our parents, our friends, our support staff, constantly preaching to us all our failings and ignoring our successes and good points... well, it's no wonder many autistic people are depressed. Having so many anti-cheerleaders is terribly damaging to one's self-worth. Particularly on top of already being the metaphorical nail in the Japanese saying, which is hammered day and night to conform, by people who don't know us and don't care about us.
The kind of relentless negativity can be internalized, and I wonder if Liane perhaps struggles with exactly that. There's certainly a mention here and there of "becoming less AS [autistic]" when talking about learning to get by in life better, or improving her social skills.
In the book, Liane wishes in several places that she had found someone like herself earlier in life. Based on how she talks about her daughters (one of which is also autistic), it seems like she eventually found that in her own family. At the time I met her, more than 15 years after she wrote this book, she had also branched out into meeting other autistic people, which I'm glad of.
The main of the book ends with a hope and a wish for the sort of world that embraces differences, rather than rejecting them. It was, I was glad to see, pretty much exactly what most people who identify as neurodiverse would wish for.
At the very end is a set of seven appendices, which include the author's coping strategies, organizational suggestions, thoughts on disclosure of diagnosis, further reading, etc. They span a bit less than 50 pages.
Great insight, as usual, Sarah!
ReplyDelete