Today, on facebook, I came across the poem “I Stand Quietly” by Dirty, Naked and Happy
In it, a mother describes how she sits quietly while her daughter works through sensory defensiveness, meltdowns, depression and insecurity. She doesn’t smother her child with hugs and kisses, doesn’t keep on with platitudes of “it’ll be ok”. Just sits. Many autistic people need parents, partners and friends like her.
Every autistic person is different, and we all experience autism differently. For those with sensory processing difficulties, the world can be a nightmare. Loud noises, overpowering smells and tastes, distracting flashes in a world populated by more and more screens, and textures that have an effect similar to nails down a chalkboard. When we tire of this constant assault on our senses, we melt down. We can’t take any more stimulation, and in this moment a hug or someone speaking can be intensely painful. This mother understands this, and despite how uncomfortable it must be not to comfort your child when they are upset, does the best thing for her child.
This poem expresses beautifully the difficulties of being autistic with sensory processing difficulties. It’s about the pain that everyday sensory experiences inflict. It’s about the separation anxiety, the fear of being alone. It’s about the struggle to have your disorder recognised as more than just pickiness, poor discipline or a difficult personality. It’s about the anxiety and depression that result from being ostracised because of responses that are outside your control.
So this poem’s attracted a lot of comments and raised a lot of topics for conversation.
First off, I don’t think DNaH is trying to make a martyr of herself on the sacrificial altar of Parenting Disabled Children. I don’t for a second believe that she wrote this as an exercise in feeling sorry for herself. Despite being written from the perspective of a parent, this is about understanding and acceptance of how her child is feeling. I’ve seen the kind of literature that comes out of the “woe is me, I’m a parent to an autistic child” brigade, and this isn’t it.
Second, I’ve also read a fair few comments suggesting various cures for autism. Now here’s a large and tricky topic right here. There are people who are pro-cure, and people who are pro-acceptance. However, I think we’ve gotta define what exactly we want to cure, here. A lot of pro-cure organisations are looking for a cure for autism, to just make everyone neurotypical. This approach, from what I’ve seen, is pretty unpopular among the autistic community who celebrate many of their differences as part of the wonderful variety of humanity. Autism often comes with a unique way of thinking, of observing, and this should no more be cured than any other trait.
This does not necessarily mean that we don’t want relief from many of the symptoms of co-morbid conditions. As DNaH explains, sensory defensiveness is not “special”, and if your particular pick-‘n’-mix of autistic and co-morbid symptoms leaves you depressed, distressed and exhausted, you have every right to want relief from that.
I celebrate the quirks of my brain that let me get into the zone, solve puzzles, see the beauty in odd things or take enjoyment from a job that requires a great deal of exhausting thinking work. What I don’t celebrate are the sensory issues, the depression, the difficulty sleeping or the exhaustion resulting from just a short period of social interaction. I don’t celebrate feeling scared in large crowds, having to hold my breath through the perfume section of shops (why do they always put those right by the doors?) or having days where I just can’t bring myself to eat anything. I don’t celebrate being upset but not being able to tolerate hugs, or checking out of reality when it all gets too much. Nobody celebrates that stuff, of course we want a cure for that.
What I’d really like a cure for, though, is unwanted advice from people who don’t understand How Autistic Feels. The people who tell me:
- I’m just picky
- Diagnoses are evil and getting one will make my autism worse
- That I’m an attention seeker/troll (especially if there’s *gasp* more than one thing different about me!)
- That I just need to think happy thoughts
- That I’m just oversensitive and need to toughen up
- That “everyone’s a bit different” or “nobody’s 100% normal”
- That all of my symptoms can be attributed to something else
- That autism doesn’t exist and I just have an unusual personality
- That I don’t have the right to label myself as autistic because labels are harmful
- That I can’t possibly be autistic because…
If I could take a pill to stop them sharing their advice with me, you can bet I’d be straight down at the pharmacy picking up a 6 month supply.
Big thumbs up to DNaH for raising awareness of sensory processing difficulties and autism in general. While there is still no cure for all the downsides of being autistic, we need understanding, and for people to sit quietly and listen to our experiences.