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.
My son is 9 and has recently been diagnosed with ASD (displaying mainly traits of Asperger and ADHD).
I love how you write because I can relate so much.
Life for Alfie became easier with a diagnosis because his school was forced to acknowledge he had a need.
Alfie doesn’t have an EHCP but he is getting access to more support and understanding.
He’s not really aware of his diagnosis he just knows that his brain is a bit different and that’s ok. Your son sounds like a lovely boy and you sound like an amazing mama ❤️
I personally did not want my son labelled initially (nobody does) but I didn’t understand what was going on with him & I desperately wanted to help him.
Unfortunately my sons school even though diagnosed with ADHD, SPD, OCD & a cognitive learning difficulty was treated like a naughty child & constantly left in the corridor. Was always kept in every break & lunch time. I asked the school to apply for an EHCP but they refused as they said he didn’t need one.
I took it upon myself to apply for one, I sent 80 pages of evidence off & my local council agreed to assess without contacting the school (much to their disgust) as soon as the educational psychologist came & assessed him so said he needs to go to a specialist school. I wanted to to remain in his mainstream school with his EHCP.
Of course his school carried on treating him like a naughty child & didn’t follow his EHCP, in December 2018 it took a turn for the worst & my son started self harming. My world was shattered, he was refusing to eat & drink & so I removed him from the school that was distressing him.
I reluctantly put him in the specialist school that I really didn’t want him going to but it was literally the best thing I have EVER done. Finally teachers get him, he is no longer the naughty child. The teachers are caring & compassionate, they treat him as a human being. His old school literally destroyed him, they broke my child & we no longer recognised him.
I am pleased to say he has stopped self harming, he actually smiles now, he gets dressed in the mornings and waits outside for his taxi, he literally loves it.
A label is a powerful thing but in my sons case without the label, without the EHCP I genuinely believe he may have ended up taking his own life he was that low. He has only just turned 10, I’m still mentally trying to get through & understand what happed.
I felt/ feel so helpless & so angry about the whole situation, teachers need to be really careful how they treat people as the way my son was treated sent him into a downward spiral.
Blimey, what a harrowing journey for you and your little one. But what a happy ending and sub a relief for you both. Well done for trusting your gut and fighting his corner ❤️
My little boy is 8, ive been trying for 6 years to get help for him, he was refferred by school year before last and in February this year i received a date for his appointment to which we attended and she said there was deffinitely something not the ‘norm’. She said autism or adhd the feeling of relief that someone seen what i seen and listened. To then go to another appointment a week ago were i would be signing things to then get his assessment but it didnt happen his school teacher cane back and said ‘there was nothing wrong’ wereas 2 month ago she was saying he was socially declining, working at a year 1 level (hes in year 3) etc. I cried alot! As i was told theres nothing else that can be done and he doesnt recieve any help or anything. I’m not giving up though.
Just don’t give up, trust your gut and fight his corner. You know him better than anyone ❤️
Not sure how I came across this post, we used to chat on Instagram a few years ago and well I went through a bit of a shit storm and closed all my accounts down. But I just wanted to say that I too have a son with PDA who is 20 and if ever you need a chat please do get in touch. I know too well the walking on eggshells and the devastation they can wreak. I also know others can be quite critical of us as parents because dealing with PDA is a delicate matter and what works for autism doesn’t when it comes to pathological demand avoidance. My son was diagnosed through CAMHS and it’s a good route to take although as you say time consuming. I hope you get all the help and support you need xx