It’s February and I’m still trying to reply to an old friend, who sent me pictures of her cherubic children on a bespoke Christmas card. She sends her love. How’s your family doing?
I’ve stalled, because I’d have to write back and say, ‘You know our gorgeous, friendly, lovable son? He’s ten now and yesterday, he threatened to stab me with a kitchen knife, while calling me a f**king shithead. Afterwards, he cried like his life was ending, too distressed to eat lunch, believing he was choking to death on his sausages and beans. The day before, he threatened suicide. Otherwise, he’s fine’.
Except, of course, he’s not. Only now, am I beginning to see the extent of heart-break and disability that his recent diagnosis of ‘Asperger’s with a PDA profile’ has brought into our lives. I am sad for myself, for our family, but most of all for him.
Everyone has heard of Asperger’s and autism, though few understand the spectrum of disabilities. Hardly anyone has heard of PDA – Pathological Demand Avoidance. It’s an autism subset, first discovered in the 1980s and initially coined, ‘atypical autism’. Researchers found an emerging pattern of so-called ‘higher functioning’ kids who appeared (on the surface) to be more socially skilled. This bit fitted our son, Harry.
But so too did the part about extreme anger outbursts. These PDA kids have an underlying reservoir of anxiety, continually spiked by the everyday ‘demands’ of life – daily routine, school; things that most of us don’t even class as demands. They are overwhelmed with hidden fears and desperately try to wrestle back any control they have. This means, ‘avoiding demands’; refusing anything from teeth-brushing to family events and a, ‘my way or the high way’ desperation. When this fails, as it often does, and life won’t comply, PDA sufferers go into overwhelm and their violent ‘meltdowns’ are essentially bouts of out-of-control terror.
Both autism and PDA are untreatable. If a child is violent at nine, research shows a ‘greater than 50 per cent likelihood’ that they will have similar behavioural struggles at 19 and 29. I fear Harry will need life-long support and crucially, deep reserves of forgiveness and understanding from those close to him. Will he ever find a partner or have kids?
It wasn’t always this way. Harry was born when I was 40, much loved and wanted. He fed well and was delightfully chubby and alert. He wasn’t the best sleeper – I put this down to the fact he was breast and not bottle fed, and I persevered with heroic feeding and sleepless nights.
His dad and I were delighted at how quickly he took to language. He was well ahead of the other toddlers in the park and came out with whole sentences, like ‘What’s that sound?’ (a plane up above!) before other tots could speak.
His early advance in language and sociable nature made him a Pied-piper figure in playgroups. Other kids tippy-toed after him and he led the play. So far, so fine. He never got into fights or pulled hair. Naturally we delighted in how ‘sweet’ and popular he was. The smug parent klaxon sounded inwardly.
He started school (young for his year) and had no trouble learning to read or write. I was surprised when he wet himself a couple of times in primary 1, but, hey, ‘stuff’ happens. There were never any issues at school. He got glowing reports. By primary 4, things started to change, but only at home.
Seared in my memory, are those first few times when I thought, WHOA, what’s going on here? Something is not right. Aged seven, he was playing with his younger sister on the garden trampoline and there was jostling over space, their legs entangling. Suddenly he was in a complete rage, shouting that his sister was taking up too much room. I saw him kick her hard in the shins and kick her again when she fell crying. The naked aggression was utterly unlike him.
I was ‘on it’ fast, but instead of understanding he was ‘out of line’, Harry went full-on offensive. He yelled that he was the persecuted one. When I didn’t back down, he grabbed my phone from my pocket and waved it over the garden pond. Dare me, his eyes said. I’ll drop it in. I couldn’t believe what I was witnessing. Our boy?! Even his face looked different. He was shockingly pale and I couldn’t find ‘him’ in his eyes. Just a coldness and raw anger.
And, so it began. Bad days followed by good days, then more bad days. I started to call them episodes. His rage would come from apparently nowhere; the smallest perceived injustice. Holding my ground, or even trying to amend any possible sibling inequality failed to heal the wound. I remember fighting tears as I weighed out two bowls of cereal on digital scales, equal to the last gram. Still it did not work. He had gone ‘beyond himself’ and threw the cereal across the room. He pulled covers off our double bed, trashed his bedroom. The ‘come down’ always involved hysterical sobbing, a heartbreak wailing, where his dad and I would sit and hold him, if he let us. His sister would hide in her room, sad and frightened and we would divide our support to comfort her too.
Sometimes Harry was able to apologise; other times my fishing for an apology triggered the entire episode to ignite again. Mostly, he apologised with an ashamed hug a day or two later. My husband and I were striving to keep Harry’s self-esteem up – we knew that the ‘normal’ part of him was horrified by the ‘Jekyll and Hyde’ part. After one meltdown he hugged his knees under his homework desk, sobbing, ‘It keeps coming back, it keeps coming back!’
We waited over a year to get an autism assessment on the NHS. I’m still shocked by that statistic. In every closed Facebook group and message board, there are still similar stories of agonising waits and lack of support. We have stumbled into a world I had previously no awareness of. Parents all over the country are dealing with domestic violence from their own children. The shame culture and lack of NHS resources are leaving them to feel like they are, ‘at the end of their tether’ (many message threads begin under this heading).
Harry is lucky that he has a stable family, and, while we are not rich enough to pursue private healthcare, we are an ordinary household without financial stress. My husband is self-employed, and I spend most of my time ‘being there’ for the kids. We have always collected them at 3pm from school; the school day is long enough for them without aftercare.
I shudder to think of the chances of kids from more challenged backgrounds, who have undiagnosed autism. It might seem logical to their parents that challenging behaviour needs, ‘a strong hand’ and increased punishment. I can only imagine the torment. We too faced the, He Needs More Discipline chorus. Instead, we found to our cost, that any shouting or ‘old school’ discipline is rocket-fuel on a fire for a PDA child.
Yes, we need boundaries. We need to encourage empathy and civility to the best of our ability. We just know that Harry’s biology is often beyond that, and we are into damage-limitation mode on a near daily basis.
The flip side of this coin is the meme that says, autism isn’t a disability – it’s a personality difference. This is a well-meant position, promoting inclusion and classing non-autistics as ‘neurotypicals’, (with their weird ways and intense eye-contact!).
I’m too raw and new to this world to go anywhere near this sentiment. Yes, we love our son unconditionally and always will. But I fear for his continued struggles down the road. The teenage years are a minefield for ‘neurotypicals’. For those with autism, they must be especially difficult. ‘Difficult’ here is a euphemism for the self-harm, overdoses and encounters with the police I read about in the PDA closed groups online.
Four years ago, when the first flashes of Harry’s troubled behaviour emerged, a friend of mine (mother to an autistic son) asked me if our son could be autistic too? My reply was a swift. ‘It’s definitely not that’, I said. ‘He has no problems at school. He has friends. He’s really popular! He makes great eye contact. He can’t be.’
Fast forward to today, where I see undiagnosed autistic traits in many of the kids in the playground: boys who walk on tip toes, drastically fussy eaters. Kids who cry so easily and monologue about computer games to their peers, always talking, struggling to listen or make eye contact. I think if autism can emerge in Harry-of-old, it can present in any child and go completely unnoticed at school.
Parents often don’t join the dots or see the pattern. Or choose not to see. I have had chats with Mums who say, ‘Oh, I’m sure ‘X’ is somewhere on the spectrum’, but his Dad won’t let me get him assessed or, ‘Oh, X does that too!? It’s a nightmare, but we don’t want a label!’
If the true incidence of autism is as high as I suspect (as a lay person observer) then strength lies in numbers and labels are power and information. Labels identify where the kids need help. We need to face this head on. My gut feeling is that there is an environmental cause for the increased numbers, but I have no idea what. I’m not a scientist, but I can see there is an army of challenged kids out there in every single school. Easy for me to say, now that I’m neck deep in the volcano. Unsurprisingly, it’s those of us in the fire who are screaming the loudest about this mental health crisis.
So, yes, I must get round to returning that email to my friend with the cherubic baby Christmas card. Who knows if her own cherubs will be threatening to stab her with a kitchen knife a decade on? I certainly never saw it coming.
I’m at the start of a long journey, fighting for support that might not exist, joining the millions of unpaid carers in the UK. Like many of them, it’s a mother’s love that leaves me with no other choice.