OUR BOY WOODY & HIGH FUNCTIONING AUTISM

As a parent, and particularly a first time parent, it’s really difficult to truly know what is ‘normal’ in terms of child development. How much is just kid being their brilliantly unique self? And when does it stray into something that might need an official diagnosis? Or perhaps more help than mainstream education can offer? Especially if like Charlotte Adorjan’s boy Woody who has done a brilliant job at masking the signs of Autism in an attempt to conform to societies expectations of him.

• Our son Woody has high functioning autism. And simply writing that sentence is one of the hardest things I’ve done.

• Why? Because even though he was diagnosed nearly two years ago, we still haven’t processed quite what that means for him. What it means for our family. And what the hell we’re meant to do now. So much so, I don’t think I’ve ever even written it down in black and white. Until just now.  

• Our journey began when Woody was two. He talked early and already had an elaborate vocabulary – The very opposite of what I thought non-verbal kids with autism were like. The health visitor was over and Woody spent the whole visit doing his usual thing of running up and down the living room reciting one of his books, word for word, for the entire hour. He’d also match his tone of voice with whoever he was talking about, playing things back like he was the Hungarian nanny or a newsreader off the TV.

• We thought this was what all kids did, but the health visitor flagged that perhaps not. She’d ‘put a note on our file’ and watch and see. ‘Lots of kids are a bit bonkers around two’ she said, he’ll probably grow out of it or forever ‘be a bit eccentric.’ We quite liked the idea of having Quentin Crisp for a son so we tried not to worry.

• The word autism was never mentioned. In fact the word autism wasn’t mentioned when at three, and now at nursery, they noticed some of Woody’s ‘eccentricities’ too and sent him to be assessed.

• Throughout the assessment-of-no-name I kept wanting to apologise for wasting the lovely doctor’s time. WE REALLY SHOULD BE GOING, HE’S CLEARLY ACE-ING ALL THESE TESTS AND I’M SURE YOU’VE GOT SOME PROPERLY AU(*COUGH*)STIC CHILDREN YOU SHOULD BE SEEING I wanted to scream.

• The assessment ended, and without hesitation she said the words: ‘Your son has high functioning autism and it’s likely his attempts at masking his condition are causing him high levels of anxiety and stress’.

• This was the first time the ‘A’ word had actually been used. So much skirting-around had genuinely made us think that perhaps he was okay. We were shocked. Relieved. Terrified. And sad. All rolled in to one blubbing parental mess.

• So what now? We were pretty much left with a diagnosis and nowhere to turn.

• On good days, Woody is what we call ‘brilliantly bonkers.’ Talking like a 55-year-old man and questioning everything and everyone. (“What’s beyond infinity?” “Did you know the whole world is in the sky?” “Why can’t I be the only person on board this planet?” “You know, chalk is made from Jesus’ bones….”)

• And most of the time he appears ‘normal’ to the outside world. He’s high functioning. Which I guess means; ‘can function well enough for what society deems acceptable.’ They explained that because he’s quite bright he’s able to work out what you’re supposed to do in a situation and then do it even though it feels alien to him. It’s called Masking. – For example he tries hard to look people in the eye even though he explained that “eyes are really, really scary. Like black holes with red lasers that will shoot out and kill me.” Imagine feeling that whenever someone looks at you.

• He also uses learnt phrases and repetition a lot. He’ll say the most incredibly grown up thing, then we realise he’s heard it in a movie and now it’s his default response. It also means he sometimes speaks with an American twang which is ‘kinda neat’ as the Americans would say.

• But because his autism is high function, it puts us in a strange no man’s land – Not quite autistic enough to make his disability visible and claim a level of understanding from people that he might have genuine struggles. And not quite neurotypical enough to keep up with what his peers are doing at school and navigate the world like the ‘average kid.’  He’s at a mainstream school. But finds it excruciatingly stressful. He chews all the skin off his finger tips to try and calm himself, and before we bought him a chewy sensory aid the teachers said during one particularly stressful day he’d managed to chew up an entire pencil and swallow it. He’s got one-on-one support every day because he needs someone to help him process what people are asking of him. He can tell you which aircraft Boeing are releasing this year. But ask him to write his name and it will send him in to a spin.

• And that brings me to his specialist subject: Airplanes. Something we’ve had to learn to embrace. There have been many, many trips to Heathrow. So many, they’ve probably put my husband on the terrorist watch list. (He takes the brunt of most of these air-fieldtrips, #saint)

• We have every make and model airplane. Every airplane book, airplane PJ set, lunchbox and documentary. If it involves planes we’ve been there done that and bought the Spitfire T-shirt. In a way we’re lucky. Things could’ve been worse. Some kids on the spectrum love drainage pipes and sewage works. So you could say we got off lightly.

• Some of Woody’s issues seem to be around sensory regulation. One of the flags that sent him to be assessed was his need to squeeze people and push his face in to theirs. He gets wonderful sensory feedback from squashing soft fleshy bits of skin. Unfortunately that means every time he sees his baby sister he has to squeeze his fingers up under her double chin and press his face so close to hers that she’s suffocated. He does this pretty much every time he catches sight of her, so in the year since she’s been born, I think I must’ve dragged him off her, and bollocked him, atleast twenty times a day. I hate shouting at him. Because I know it’s a compulsion. He has to do it. A bit like an itch that has to be scratched. But the physical strain of pulling him off her all the effing time really gets to me. But no one can get him to stop doing it. And for now it’s just become another quirk we accept and just get on with.

• And most of the time we do just try and ‘get on with things.’ Sometimes we try and talk to other parents about stuff and they say: “oh my child does that. It’s normal.” But the ones that hang out with us behind closed doors know. Behind closed doors he is free to be him. It can all be very exhausting. We’ve met some amazing families through various SEN groups that have been a real support. But we can get weird pangs of guilt sometimes when we see other families with children far worse than Woody. One minute we feel we don’t have the right to ever grumble about our lot. He can talk. He can go to school. The next, we’re sobbing about how lonely it is without anyone who understands.

• Woody is now six. Lately we can see he is really struggling. He still runs up and down the living room and we now know he does that to make himself calm. (Or Stimming as it’s called.)

• But his airplane chats have taken on a much darker tone. He now only really talks about airplane crashes and aborted landings and emergency procedures most of the day. That’s 80% of his life preoccupied with aviation disasters.

• Breakfast is taken with a background noise of ‘Brace! Brace!’ as he crashes another plane in to his Weetabix. Pretty much all his play centers on the topic, with people dying as their planes slam in to mountains and babies getting left on sinking 747s. It can get upsetting to hear, exhausting to watch, insane to LIVE around. Sometimes it gets so much we beg him to stop. Which only adds (aviation) fuel to the fire.

• We often feel at a loss at what to do. We know kids on the spectrum take solace in specialist subjects because it protects them from all the scary unknowns in the world – If you know everything there is to know about a something, then you’re in full control. All is calm with the world. – We could embrace the airplanes. They connected us. But the crashes are just so hard to get involved with.

• The school have now referred him to a mental health service to get him and us some support. They too are getting a bit worried about all the talk of planes crashing in to the school and the teachers ‘getting slaughtered.’ He’s started giving his cousins nightmares.

• I went to a seminar recently that said with autistic children you should “connect and not correct.” So on one of the rare moment when I felt I could get through to him I managed to ask why he loves plane crashes so much. His answer made perfect sense, of course – “I love to think about crashes because it’s like my feelings – It’s something hard exploding in to a thousand pieces. Then I don’t have to scream. I just have to watch the crash to feel it all.”

• It’s world Autism Awareness day today. I so wish I could calm the world and stop Woody’s planes from crashing. But perhaps I can start by getting more stories like ours out there, so the world gains a little more acceptance and understanding of ‘brilliantly bonkers’ people like him.

• Myself included.