Valerie Foley

Hypersensitive hearing

In Medical on January 4, 2013 at 8:03 am

Hypersensitive hearing

A defining feature of Billy’s life, including the in-utero bit, has been hypersensitive hearing or hyperacusis.

I saw Pirates of the Caribbean (I still don’t recall why) when I was 25 + weeks pregnant. I was noticably pregnant and glad people could see I was. That’s because every time swords clashed, Billy startled so strongly that my clothes moved. It made people around me laugh, but for me it was, honestly, not funny. It made me very uneasy.

When Billy was born, his startle was very noticable. People in the hospital found it hilarious. Midwives, doctors, visitors all giggled as he reacted to their sudden vocalisations. In my post-birth state, I wanted to punch them all.

Family members offered ‘great’ advice about how we should stop expecting him to react to sound, and then he’d stop. The logic of that still eludes me. I can only assume others have mystical wizardly powers over their babies that I never developed.

Once we found ourselves in autism world, people wrote off the hyperacusis as a part of autism. Unusual response to and under regulation of sensory stimuli…? Tick.

The truly hilarious part, is that it took until Billy was 8 for a doctor to take us (and him) seriously. A very kind and smart Ear Nose and Throat specialist, who had seen Billy as a three year old, and then left town (two unrelated concepts, I like to believe) saw Billy again as an eight year old.

He noticed the startle was still there (odd the other guys didn’t, but hey). He observed Billy’s immediate pain response (not a learned, generalised response) to sound. He listened to Billy as he explained the specific sounds that caused him pain. He saw that Billy had generalised anxiety to the sources of sound in a very limited way (babies are his nemesis, he’s leery of roosters but people and dogs are the light of his life). The ENT ordered CT scans.

Turns out, part of this doctor’s absence from our city was to do a post-doctoral fellowship in New York. He was studying a condition called Cochlear (and/or Canal) Dehisence. He saw, in Billy and in Billy’s scans hallmarks of the condition.

We have to wait until his auditory system is fully mature, to see if we can take action. It is usually a degenerative condition seen in middle aged men, but evidence is emerging that it has a congenital base. Billy has this condition on top (and probably neurologically linked to) the sensory processing issues common to autism, which makes his interactions with some sounds exquisitely painful.

But… I write this, after a summer holiday full of stealth babies and coughing strangers, to illustrate one simple point.

Autism is a behavioural diagnosis. It is not (yet) a medical one. But behaviour doesn’t come from nowhere. A lot of it, all of it… who knows… has a biological base. A lot of it (too often, all of it) in autistic people is written down to ‘just autism’, and kids are left to struggle through life without adequate medical support or solutions.

Billy’s hyperacusis, intensely acute as it may be, is not autism, despite the fact that he is autistic and many others on the spectrum live with it or something similar. It is a physiological issue that may be able to be ameliorated. There may be solutions that will lessen his pain and make a walk down the street less of a minefield of potential painful aural assaults from well meaning dogs defending their front fences.

I like to think of hyperacusis as a symbol of what might be possible in other areas of Billy’s life.

Without engaging (today) in questions of neurodiversity, I would eat the world’s mouldy toenails to lessen the struggles in Billy’s life. Not my struggles, not the struggles I perceive my son to have… I’m talking about the genuine pain and medical challenge he carries with him (and is fortunate enough to be able to talk about) every moment of every day.

It is my fervent wish that there be more doctors like our ENT, who think outside the box, and treat kids like Billy with respect and professionalism. Let’s face it, if a doctor (or a parent) ignored a critical life altering issue in a neurotypical person, we’d all be cursing them on tabloid TV shows.

Autism shouldn’t make the pursuit of optimum health any less important.

In my book, at least.

  1. A mother always knows when there’s something’s up. I hope it won’t be too long before the medical community will listen to the mother’s or the parent/carer’s concerns in a more receptive and interactive fashion

  2. It always amazes me how parents’ concerns are poo-pooed away or others think are funny. I think you do very well for Billy, and he is fortunate to have you as a mum. Lucas went from a child who ignored almost all sounds, to a kid who covers his ears and cries. What kind of things show up on an MRI for auditory issues? I’m hoping to get another MRI for Lucas and this would be interesting for them to note. Keep up the good work!

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