I was going to write something else today, but this morning I got chatting to a lady about autism who asked how we got a diagnosis for Victoria, how did we know to even try to get a diagnosis and what did the diagnosis mean for us, so I thought that would be a good subject for today’s post. I’ll start near the beginning…
“Don’t worry”. “She is fine”. “Every child is different”. “She will catch up”.
These were phrases we heard a lot during Victoria’s first months and years. Victoria had been the perfect baby – never cried, slept well etc. But there are milestones you expect your child to hit at certain times. Sitting, crawling, walking… Victoria missed every single one. But wasn’t until pre-school when our eyes were really opened to how different Victoria was from the norm. We knew there was something but I certainly went into denial. I will never forget completing a questionnaire that asked questions like “Do you get eye contact” and I’d immediately say “yeah… sometimes… maybe”. Nobody wants to accept their child isn’t normal. It was only when Victoria’s keyworker suggested we get her on the pathway for a diagnosis that things became real. We will always be grateful for her intervention…
It took a further 3 years to get a formal diagnosis. Instigated by the local healthcare team (but could be your GP) Victoria had to undergo a number of assessments by various paediatricians and speech and language therapists, each proceeded by months of waiting and never knowing if the next appointment would be the last.
4th January 2019 was the day we went to yet another assessment albeit this wasn’t an assessment as suggested by our letter. This was to tell us Victoria has autism.
The emotions we felt in that minute could take up pages of Facebook on their own. Relief. Shock. Sadness. Grief. We felt them all and then some. But we did get the pack of leaflets I mentioned before though…
I really didn’t want to label Victoria but in all honestly without that diagnosis we wouldn’t get any help at all as everything is predicated on that piece of paper. Technically you don’t need a diagnosis to get an Educational Healthcare Plan (a contract put in place to guarantee support in school) but the reality is you do. It also allows Victoria to take part in things other children take for granted. Yes, I know it’s not nice for anyone to have to queue for a theme park ride, but Victoria would literally miss out on vast swathes of her childhood without that little bit of extra help her diagnosis opens up for her.
I used to think parents wanted to label their kids with autism, ADHD etc. It absolves them from responsibility doesn’t it? Their kid is really just a little shit, bit give them a label and it is no longer the parents’ fault. And think of all the extra benefits they get too… Trust me when I say this, nobody would go through what we have to get that piece of paper for the sake of a few quid. And having seen first-hand the assessments required to get that paper, it’s certainly not something you (or more importantly, your child) can fake. So please try not to be the judgemental tosser I was a few years ago before I knew better…