The road that led us to medicating Finn with a low dose antipsychotic (Risperidone), four months ago, was a rugged one.
He climbed out of his Velux window 2 stories up and onto a pitched roof. His ‘flight’ response has always dispatched him upwards; trees, shed roofs, car roofs – it’s ultimately where he feels safe and I have to quell my maternal inclination to berate – much the same as when they walk into a road without looking, because underneath our, not so cool, exterior we’re terrified.
As Finn’s anxiety fuelled, erratic behaviour escalated back in April and May, it got to the point where I had no option but to call 999 on two occasions. He was brandishing knives and smashing windows; – at risk of harming himself and me. It ‘hands up’ has to be one of the most difficult things I’ve ever done – an internal conflict of gigantic proportion, a self deprecating low.
On the flip side, it escalated our case and the relevant agencies (whose deaf ears had failed to capture our previous pleas for help) were duty bound to act. It culminated in both my children being placed on Child Protection Plans. Finn, at physical risk of harm and Tilly (his sister), at risk emotionally. (The impact of PDA on siblings, warrants an entirely separate blog.) Essentially, our medication options were narrowed down to an antipsychotic or an anti-depressant/anti-anxiety drug. As with anything, there were pros and cons to both but it all came down to timing – his behaviour was out of control and we didn’t have the luxury of waiting 4 weeks for an anti-depressant to take effect so, wrongly or rightly, we opted for the faster acting antipsychotic, knowing full well that the down side effect was ‘weight gain’. To counteract the impending weight battle, we kissed our garden good-bye and installed a ridiculously disproportionate trampoline for our small parcel of land. This was a very good decision – right up there with the dog, the coffee machine and Lazy garlic.
The drug did exactly what it said on the tin – I’m in awe, that they’ve developed a tablet which will control that part of the brain and prevent it from ‘flipping’. I was under no illusion that it was a miracle tablet, I simply needed to buy time and de-escalate in the short term. Roll on 4 months and he’d gained over a stone (about 8kg) which had a negative effect on his, already fragile, self esteem. Despite this lousy side effect, I don’t regret putting him on the drug. Indeed, I would have taken them for him if I could – at least that might go some way to explaining my personal ‘expansion’ on the weight front. Aside from the Prosecco, carbs and lack of exercise, I can find no reason for it 😉
The time for change felt right and we decided to give the antidepressant/anti-anxiety drug, Fluoxetine a go with Finn completely on board. The CAMHS doctor asked Finn how he was and he replied; “Terrible. I want to die because of my autism and PDA” ….nuff said!
What really gets my goat (WARNING, RANT ALERT – skip to final paragraph if you’re not in the mood) is that CAMHS don’t recognise PDA as it isn’t listed in any diagnostic manual despite being recognised by the Department for Education and The National Autistic Society (A Government agency and the UK’s major autism charity funded by said Government), as well as ‘demand avoidance’ being listed as a sign and symptom of autism in the NICE (National Institute for Care and Excellence) Pathways guidance.
Even if that’s not enough (and it should be); PDA is a profile of behaviours within the autistic spectrum so how, in today’s modern world of iPhones, 3D printing, artificial intelligence and space travel, can any bona fide clinician working for the NHS Service, not acknowledge a set of evidence based behaviours which undoubtedly affect mental health when their mission is publicly documented, as follows: ‘We’re leading the fight for a future where all young minds are supported and empowered, whatever the challenges. We’re here to make sure they get the best possible mental health support and have the resilience to overcome life’s difficulties.’
Well, my gorgeous boy is faced with a long list of challenges and he is in desperate need of mental health support – not a list of irrelevant strategies disseminating from a manual. If I went to my doctor with a list of symptoms (and no underlying diagnosis) – can you imagine the fallout if they turned me away on the grounds that I didn’t have a recognised diagnosis which would enable them to offer the appropriate treatment?
I have encountered two genuinely supportive CAMHS clinicians who have stood out from the crowd, but in the spirit of ‘telling it like it is’: CAMHS, you’re abdicating your responsibility to countless families, hiding behind policies and procedures and yet, you’re perfectly capable of providing life changing support within those parameters. We urge our children to persevere, think outside the box and be compassionate but the system doesn’t practice what we preach and it filters down, subliminally infecting our future generation.
Thankfully, we’re surrounded by positive influences that counteract the system; individuals that focus on the child and the needs of our family with an innate passion to make a difference, irrespective of recognised diagnoses within a manual. These heroes save us from an isolation that is all too common amongst families managing PDA and I am ridiculously grateful for them. They say that a grateful heart is a magnet for miracles…..hmm.🤔