Remember when you were little, playing hide and seek with your friends? That giggly, bubbly, sweaty-palmed, shaky crescendo of anticipation when you were the seeker, knowing that any second one of your pals would burst out of their hiding place when you got really close and shout "BOO!" in your face at full volume. That big adrenaline hit of being jump-scared - magnified by the fact that you knew it was coming.... any second now... ooooh, not there..... heeee heeee heeee.... any minute ..... under the stairs?... no.... behind the curtaiBOOOOOOOO!!!!!! (cue hysterical giggling for 2 minutes).
Now replace the fun game with something that is life-threatening. You know it is life-threatening because your brain tells you so. Then take that same crescendo of anticipation but replace the giggly fun with fear. Terror, actually. You are now in full fight or flight mode. Your pupils dilate, your heart pumps, your muscles tense, a whole bunch of stress hormones have been dumped into your bloodstream and the only thing that is real to you is the anticipation of the impending threat to your life. Any second now...not now....any second....I know it's cominCASHIER NUMBER 4 PLEASE!!!!! Boom. (cue cortisol hit and J hits the floor of the bank in a faint)
Most people on the autism spectrum have some sensory processing issues. For J, the strongest issue by far is his sensitivity to sudden noise. Actually his sensitivity to the anticipation of the sudden noise. Tannoys/Sirens/Fire Alarms/Car Alarms/Church Bells/Lawn Mowers/Hoovers. You get the picture. It's rare nowadays for him to go the full faint - the situation above happened a couple of weeks ago for the first time in a while. But for J, the build up and fight or flight reaction is a very common occurrence. Supermarket and shop announcements carry a special fear for J - I always thought it was just the sound frequency, but I recently realised that it's also the fact that a disembodied voice is booming all around from every direction, when he's already on the sensory rollercoaster of colours/sounds/people/smells that is a supermarket.
For the majority of us, loud unexpected noises might momentarily make us jump, but our brains quickly rationalise and filter out the noises and we carry on without a worry. But if your brain isn't good at rationalising, your belief systems are hard-wired and as rigid as steel, your brain magnifies and distorts all noises and you have the memory of a computer, you're not going to brush yourself off and carry on as if nothing happened. You will develop a fear of that fear - that fight or flight feeling and you will never want to leave the safety of your home ever again.
So, what can you do as a parent? You know that your child is in agony - mentally and physically. The short answer is that I still don't know that answer. I sometimes feel like we've tried everything and nothing has "worked". If anyone has THE ANSWER, I'd like to know immediately please but, for now, here are some observations I've made over J's 8 years:
Things that didn't work:
Assuring your child that "it's ok, it was only a siren/alarm etc. It won't hurt you"
Utterly pointless. To them it isn't ok (rigid as steel - remember). To them it was unbearable and their system is reeling from the assault of fear and shock.
Trying to make sure that your child isn't exposed to these noises.
Impossible and counter productive. Believe me, we've tried! Yes, a parent's instinct is to protect their kids from harm but there's always something (holiday in beautiful peaceful hamlet in Devon = happened to fall on the one week of the year that there was a bell-ringers convention in the tiny church - all day/all evening - argggh!) We started shopping online; avoided shopping centres, swimming pools - anywhere with tannoys. Basically by doing this we were buying into J's fear and confirming that his fear was justified.
Listening Programmes - Auditory Integration (weirdy loopy music programme to realign brain wirings)
Meh. Seemed to help a little bit while we were making J sit and listen through special (and VERY VERY expensive) headphones twice a day for half hour sittings. As soon as we stopped, it stopped working.
Ear Defenders and every other type of earplug known to man
Meh. If worn all the time, the auditory sensitivity can get much worse. They act as a security blanket now - J likes to have them near him at all times, but very rarely puts them on (and he's eaten 4 pairs - a whole other sensory issue there...)!
Thinking that the more you expose a child to a noise, they will eventually get used to it.
Rubbish (in my opinion). Memory of a computer remember? Each time they get that fight or flight reaction, the memory is logged for future reference, the belief that the noise is BAD is made even more rigid than the steeliest steel.
Things that have helped:
Medication.
Yup. We got there after years of soul searching and resistance (from me). It seemed so wrong. But, when you've tried all else and your kid's quality of life is really suffering.... Basically, unless you've walked in our shoes on this one....Well, the tiniest dose known to man of an anti anxiety drug and the sun came out for J. For six whole weeks. Then the noise thing came back but that gap allowed us to change our ways (all of the above!) and to make some tentative headway (all of the below:)
Modelling that you, the parent, are fine with the noise
This is very different to telling your kid that he should be fine with it too. When a siren goes screeching past and J hits the deck, we don't "poor you" and "it's nearly gone" etc. We carry on with what we're doing and let J do his thing. Very gradually - over a good few months, J has developed a coping strategy of his own. He has discovered that if he shouts (the same phrase every time) really really loudly, the output he is making, reduces the input of the noise. This is a work in progress as it's not totally socially acceptable for when adulthood looms but J has discovered this on his own and it works for him for now.
Peer Pressure
J likes to follow rules. When he's at school (notsomuch at home!) he likes to get it "right". When all his peers are modelling that noise is not bothersome to them, J can now copy his peers and hold his reaction in until he gets home. And then explode and work through it in his own space. I think this is an amazing feat of bravery. This is one of many lessons that J and all people on the spectrum have to learn by rote - totally unnatural to them, but necessary for existing in society.
Accepting that even though J will never get used to sudden loud noises or the terrible feeling of fight or flight, he will find strategies to deal with his reactions to them. That's different to getting used to them. Hopefully, one day someone will develop something to take away this auditory sensitivity that so many people with autism struggle with. Hopefully they will hurry up with this.
Understanding that your child's reaction might seem strange to you but to them it is perfectly reasonable behaviour.
To you, seeing J passed out on the floor of a bank because he heard a recorded announcement, might seem odd. It was only a recorded announcement. To J this is the equivalent to you or I being in a catastrophic pile up on the M4. In his world this is as normal a reaction as your reaction would be to a car crash in your world. Understand. Don't fan the flames. Just understand.
J's Understanding of Autism
We talk about it a lot. He asks about it a lot. We've made him a book. He's learning that he's different. This is heartbreaking but necessary. He is also learning that there are "rules" to be followed in order to be part of life. I'd like to teach him that there are also plenty of rules to be broken but we're not there yet. Hopefully, he's also learning that there are a lot of people in the world who understand, who care and love and want to help him and everyone in the world with autism. My biggest wish for J is that he gets as much fun and enjoyment out of his life as he can handle. We're getting there... Actually, he's getting there. He is utterly amazing.
