I’m not into autism inspirational stories. It’s a wonderful thing when a nonverbal autistic can eventually learn complex communication. It truly is. To live a story like this is to triumph over extraordinary difficulty. But this inspirational story is not my Charlie’s story. At nine years old now, the signs that might point to this outcome for him are just not there.
“Have you read/seen ‘The Reason I Jump’?”
If I got a dollar every time someone asked me this question, I’d be rich.
There is almost no discussion of the controversy surrounding the book, nor the reliability of ‘facilitated communication’. There is no acknowledgment of yet another elephant in the room: even if these are Higashida’s words, they cannot simply be applied willy-nilly to all autistic children’s experiences, yet that is what the film does, with blithe confidence.Paul Byrnes
I’m happy for Naoki Higashida, that he was eventually able to author a book about his experience of being nonverbal. Your boyfriend’s cousin? I’m stoked, too, for him and his transition to talking at age 14. And I love that your autistic student can fully communicate using an AAC device.
But none of this means it’ll happen to anyone else. Their great successes, unfortunately, don’t have any influence on what Charlie might be able to communicate in the future.
All autistic people are different. Those inspirational stories are…just that: inspirational stories.
It’s harmful to assume that every single autistic person can or will learn to communicate. It’s harmful to assume that every single person with autism can understand the world around them.
These stories can be wonderful and heartwarming to read. But the reality is much different for most severely autistic kids — they won’t grow into adults able to advocate for themselves, share their needs, or inquire about yours. These children won’t make headlines for graduating college or launching a startup that employs other autistics.
Presume competence but don’t lose sight of reality
Do I think Charlie understands a lot more than he outwardly conveys? A hundred percent, yes. Does this mean that he quietly understands everything happening around him? No. It doesn’t tell us the extent he’ll be able to communicate in the future, either.
We have to remember how many autistics with Level 3 autism, like Charlie, also suffer from intellectual disabilities, which makes these lofty hopes we have for them that much harder.
So next time you read an inspirational story in the media, be careful not to generalize. The reason that story is being reported is likely because of how notably rare it is. We can’t use one autistic person’s revolution in communication to form our expectations.
It’s unlikely that Charlie, and people like him, will ever learn skills like this. It’s okay, it doesn’t make them less-than. We must accept the reality of this severe disability, yes, while harnessing what these stories offer as well.
The inspiration these stories can bring is encouraging and heartwarming, but alone, it’s a skewed, limited slice of a reality that needs open eyes to navigate — because blind hope is not the strategy that illuminates the path to a child’s full potential.Eileen Lamb
Erin2023-05-05 at 11:50 AM
Thank you for this. There’s a family in our town with an autistic boy who is non-verbal, but learned to spell on a device and his incredible intelligence became obvious. One parent has told his story through social media, and SO many people have asked us, “Do you know —-? Their journey is just so incredible, so inspiring.” and I’m so tired of hearing that. As if our story can also have that kind of outcome; or that should also be our goal for our kids? Ugh. But you know, my husband actually knows the other parent. They ran into each other a few weeks ago, and as they were chatting, the other parent told my husband to call if he ever needed someone to commiserate and vent with, to call him… because his kid may be a genius, but life is still quite hard. Knowing that actually gave me a little peace about it all.
ANyway, I just found. your blog and your voice is a breath of fresh air for me. Thanks for speaking up!!!