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Autism Parent Memoirs: Illuminating or Exploitive?

Autistic and neurotypical people have very different views. Who's right?

Ten years ago, memoirs from parents who raised autistic children were hailed as illuminating and inspirational. Today such books are called problematic and even exploitive. What changed?

The answer is, a generation of autistic teens grew up and began speaking out en masse. Their literary criticism is based on growing up under a generation of parents whose ideas often mirrored those of the memoirists. Folks who praised the books tended to be parents themselves who recognized what they saw as a shared experience without considering how the children might have felt about the same books’ depictions.

Autistic people are quick to point out that no one else knows what's it's like to grow up on the autism spectrum. Parents know how we looked, but when it comes to how we felt, they and everyone else is just guessing. That leads to misunderstandings and worse.

Autistic people cite language in parent memoirs as ablest, and they criticize the negative ideas expressed by parents about their children. Indeed, it’s hard to read a passage like, “I can’t imagine any girl being attracted to my son,” and not feel bad if you identify with the child. Yet I’ve seen words like those in a dozen parent memoirs and I know it’s a widespread fear. We read those lines, and recall the low expectations and negative talk when we grew up, and it makes us sad.

In defense of their writing, parents often say, “But that’s how I felt! What’s wrong with writing the truth?” Parents are often filled with fear and worry about their children’s possible future, particularly if their child has a disability. Most older people who socialize with other parents have heard that kind of talk before.

However, it’s one thing to hear something from a fellow parent in private. Reading the words in a popular book gives them a different meaning and creates the potential for harm.

As much as autism awareness has grown in the past decade, this still comes as a shock to many parents. The author of the recent book To Siri With Love, for example, was totally surprised at that criticism of her work from autistic people after getting praise from mainstream media reviewers.

That highlights the significant disconnect that still exists between people who are actually autistic and those who watch us and express opinions. Even when those watchers are our own parents, they can say and do things that go disastrously wrong.

The first step in solving this problem is to recognize it exists. We cannot expect tomorrow’s parents to behave with more sensitivity and awareness unless we inform them of that need. Critics of To Siri With Love have certainly made their feelings very clear with respect to that book, but that’s not necessarily going to have any impact on another writer next month or next year. Nor will it inform the parents of tomorrow.

Furthermore, it will have no effect on the many parent memoirs that preceded To Siri With Love or the collective millions who read them. Autistic people need a way to engage parents if we want to change the conversation. Of course, many if not most autistic people become parents (just like everyone else) and when we do, we join both camps.

An astute reader might then ask if some parents of autistic kids are autistic themselves. Certainly, they (we) are. Do autistic parents say or write things that might be hurtful to their autistic kids? I suspect we do. This may be a parent sensitivity issue as much as an autistic–non-autistic one.

The best thing is for more actual autistic voices to write about what we heard growing up, and how those words made us feel. Just as we read parent accounts of autistic children, parents must read accounts of autistic children under their charge. Only then will they have pause to think and reflect on what they said and did, or what they might say and do tomorrow.

What might come of that? Parents might reflect on things said and done, and when they write their stories, they might find courage and wisdom to say what they thought then, and how they see those same things now. I would applaud any parent who could write about doubting their child’s future ten years ago, and reflecting on how those thoughts must have hurt him then, and how they ultimately proved wrong or unwarranted today.

If those same parents ultimately emerge as their children’s greatest champions that would be a wonderful thing.

I also believe like talks to like most effectively. Just as we autistic people are very effective at communicating our ideas within our community, parents have similar communities within which their communication is very effective. If we can get them talking about this issue I believe that will do a lot more to effect change, and that starts with our making them aware.

The past decade has seen an explosion of actually autistic writing, but that writing has made few inroads in the parent community. I hope that tomorrow’s parent writers will begin absorbing these ideas and being influenced by them.

Here are some links to actual autistic writing online. There are many more out there to find.

Maxfield Sparrow, writer of Unstrange Mind:

Michael Forbes Wilcox:

Lindsey Nebeker:

Justin Spectrum, writing for the Association for Library Service to Children:

Lydia Brown:

The Autistic Self Advocacy Network also has a few books by/about the community:

One thing that I’ve said before and will repeat: We autistic people need to write things that engage and entertain the non-autistic world if we want them to read our writing. Even in this video-clip era writing remains one of our best ways of communicating ideas.

(c) 2017 John Elder Robison.

The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay will give you food for thought, actually printing and eating it may make you sick.