My daughter has autism, but wasn’t diagnosed until November 2021, in fact it wasn’t even suspected until the first lockdown. So she’s gone through all of primary school and half of secondary not even realising she was “different”, and nobody having a clue that she was struggling so much. This has led to further complications of Tourette syndrome, OCD, non-epileptic seizures and FND, all of which is rather complicated and makes the diabetes look easy! I’ve had quite a steep learning curve, I didn’t find it hard to adjust to the autism at all but it amazes me how many people don’t seem to have a clue about it and don’t want to either. Mainly teachers, you try to explain that she will take things very literally, so anything too vague or open-ended she‘ll struggle to understand what you mean. She sees things very black and white, and whilst she understands what sarcasm is, she will never recognise when you are using it even if you think it’s glaringly obvious. And if you want her to do anything you need to give very clear step-by-step instructions. Yet we still get teachers saying “go and do some research” and she’s sitting there very confused - how? What methods can I use? How many different resources? How much am I supposed to write? Etc etc.
In terms of diabetes professionals, they’ve always been OK, I always go in with her though and do most of the talking, which is what she likes. She’s 17 now and for at least the past year I and they have been trying to encourage her to go in alone at least for part of the meeting, but she flat out refuses and always wants me there, because she says she doesn’t know what to say to them. Although she is getting better at answering for herself. In September she starts transitioning to the adult team so that will be different. OCD was the worst, it all stemmed from a couple of verrucas she had on her foot, she would wear 3 layers of socks and almost never take them off so as not to expose the world to the evil germs, and so any sort of foot checks were always refused (for a while she would honestly rather her feet fell off than allow anyone to examine them). Her wishes were always respected even though it wasn’t the best idea (although at her age I’d hope it was pretty unlikely that she’d be starting to have problems already). So imagine how proud I was of her when we saw the consultant a month ago, he donned some gloves and announced that he wanted to check her feet, and she just said “OK then” and whipped her socks off! I’m so glad that one is cured. The rest either won’t change or is still a work in progress.
I’m rambling a bit… I don’t really know how to answer your question other than could you take someone else with you to help with explanations? I find it easy to understand how my daughter thinks now. I do realise though that autism is a very broad spectrum and I’m very tuned in to my daughter’s particular needs. We’re under a paediatrician at the same hospital, so she and the diabetes team can see each other’s appointments and test results and so on, and apparently one of the diabetes doctors phoned the paediatrician in a panic when we turned up for the first time with daughter in a wheelchair due to FND. No it isn’t anything to do with the diabetes but I think it scared them! So that works quite well but unfortunately we live right on the corner of 3 counties, the hospital is in one of the neighbouring ones, we are under CAMHS and physiotherapy in the one we live in so there’s a bit of a disconnect there.
My daughter does most of the CAMHS appointments on her own now, they know all about all the mental health issues though. Anyone else she likes me with her to help her do the talking. Which is fine at the moment but as she has to start changing over to adult services I don’t know how it will work, and I do hope she’ll manage!
