One of the themes that’s continued to arise over the last 8-10 years, both in my head and within my online community, is a diagnosis for all that Hugo is and does. I consider seeking a diagnosis when things are bad – when Hugo’s thrown the shit at the parental fan and I feel like I’m drowning in failure, it’s my flare for help. Then things settle down for a bit, a teacher, GP or CAHMS give you a look/letter of “I’m sure he’ll grow out of it”, so I lose my gusto and don’t want to rock the behavioural boat – until the next time!
But you know what they say, doing the same thing again and again, expecting a different outcome, is madness. So, for anyone with a spirited firecracker, who’s tick is ticking to a different tock, here’s where we’re at with a diagnosis, or – as I’ve come to prefer it – ‘description’. After all, a diagnosis tends to imply something’s wrong and it’s not that there’s something ‘wrong’ with Hugo, it’s just that he’s different to the ‘norm’.
Does Hugo have a diagnosis?
No. Right now Hugo is considered a ‘naughty boy’; a rebel without a cause (or clue!); a “disruption to learning” – quite simply, a pain in the arse when he’s in that kind of mood. Over the years I’ve visited doctors, we’ve been referred to CAHMS and we’ve had private consultations but, with the ups and downs of Hugo’s outbursts, my energy to persist ebbs and flows. When things are really ‘bad’ I go banging on all the doors, I shout for help, I Google the shit out of it, I write petitioning emails and I attend meetings. Then, just as soon as the declined referral letters come back, doctors say “it’s just a phase, he’s testing his boundaries” and I’m told to attend another meeting, Hugo hits a ‘good’ patch, and the optimist in me thinks ‘it will all be ok now. Maybe, that was the last time?!’
Do I want a diagnosis?
For a long time I would have said “no”; knowing that any diagnosis wouldn’t bring about an instant change to Hugo’s behaviour; it wouldn’t bring a magical cure and would run the risk of stigmatising Hugo for the rest of his life. He’s a bright boy and I worried he’d look to use his diagnosis as an excuse. While I knew a diagnosis would bring about – the much needed – support and understanding, I believed (and still do) he should receive support and understanding regardless of a piece of paper. Hey, hippy chick – get your head out your arse, that ain’t gonna happen!
But my answer, at the moment, has changed. I want a diagnosis. We need a diagnosis. What’s brought about this change? The emails and messages I’ve received from adults, telling me they were Hugo; they struggled in school; they couldn’t control their emotions; they missed out on opportunities; they were misunderstood. Then, they were diagnosed as an adult (with ADHD, ASD, Aspergers, Dyslexia etc) and their world made sense. I so desperately want Hugo’s world to just make a little more sense to him, even if not anyone around him.
Does Hugo want a diagnosis?
Hugo’s main driving force in life is to ‘fit in’, so, on a ‘good day’, no. He doesn’t want to be different from any other child, so having a ‘label’ might run the risk of alienating him from his peers. But, unfortunately, Hugo is different from his peers and on a ‘bad day’, even he admits he would like support and help from others who know what he’s feeling. So, overall, while the ‘good days’ make great memories, it’s the ‘bad days’ where the learning happens and progress is made.
The many barriers to diagnosis
Where to start! I’ve been down so many roads, even I feel a little lost! I’ve liaised with the primary school, the secondary school, our GP, counsellors, SENCO and private child psychologists. One of the most frustrating responses to asking for help has been blaming Hugo’s stage in life or other, environmental factors:
- He’s only a toddler, he’ll grow out of it
- You’ve just separated from your husband, give him time to adjust
- He’s just started school, give him time to settle in
- He comes from a broken home
- It’s a new teacher, it can take a while to get used to
- It’s Christmas, it can be stressful for the kids
- There’s a lot going on, it’s the end of term
- There’s big changes in year 6, they all feel anxious
- Going to secondary school can be a daunting time
- He’s pre-pubescent, it’ll be down to his hormones
- He’s finding his feet at his new secondary school
I know all the above are normal, but I’ve now seen 3 of our other children/step children go through these exact same challenges, and they’ve indeed, grown out of these phases/adjusted.
Where are we now?
A few weeks ago, I shared on my Instagram stories that I finally spoke to a professional that not only ‘got’ everything I was saying about Hugo, nodding along and not dismissing my concerns – she could even describe his traits to me before I’d even uttered them. It was like talking to a medium – except, she was just well-versed and familiar with children with ASD and the assessment process. Although she’s never met Hugo, it was like she knew him and all his foibles.
It was after a lot of research – online, talking with other parents and adults with diagnosis – that something called Pathological Demand Avoidance (PDA) had been mentioned a few times. It is part of the Autistic Spectrum (of which I’m no expert), so, I contacted the National Autistic Society, having completed their questionnaire on PDA and scoring (like it’s about points?!) scarily high (points don’t win prizes in this quiz!). The first step was a pre-assessment consultation with one of their specialist psychologists, which was conducted via Skype a few weeks ago. The cost of this was £200, after years of “just see how he goes for the next six months” this seemed like a small price to pay for a specialist’s two penneth on the matter.
After an hour of what seemed like therapy – unloading all that is Hugo onto a complete (but highly relevant) stranger – she concluded that Hugo is in desperate need of a thorough ASD assessment. His age and the fact he’s getting bigger, badder and stronger, mean without the help and understanding NOW, he will soon be of criminally responsible age should his outbursts continue.
That’s where we’re at – waiting for the psychologists recommendations in writing, like my golden ticket to a place where people don’t think I’m just searching for an excuse for my ‘naughty boy’.
As for assessments – just for your info we can seek the CAHMS/NHS route for assessment, which can be a very slow moving process due to the incredible strain on these services. Or we can ‘go private’ at a suggested cost of between £1500-£3000 for the level of assessment Hugo requires. Or, we can do both – which is were my head’s at. Self-referring to CAHMS (available in our area) with the backing of our GP and the SENCO at Hugo’s school, while also saving the pennies for a private assessment.
Why both? Well, I’ve been advised that while a private assessment can be accessed a lot quicker, not all schools recognise a private diagnosis (fortunately Hugo’s does)! Additionally, to access all sorts of support for Hugo, we may also need an NHS assessment.
The irony of all of this – I’m signing off, to go pick up my beautiful boy from playing football with some of his friends, from a village 14 miles away, that he caught the bus to, on his own. Proud doesn’t touch the sides on that one.