DS was diagnosed two weeks ago with autism. We had been expecting a diagnosis of ADHD with possible mild ASD, but he scored so highly on the ADOS test that the paediatrician said she thinks the autism is the cause of all his behaviours.
But every time I've told anyone, friends and family, I've had complete disbelief. Responses have ranged from "They can't diagnose that, they only saw him for an hour" (my mum) to "he's not autistic, I've worked with autistic children and he's not one." (a friend). "That's just boys" (my mum's friend), the usual "they over-diagnose autism these days" and "something bad must have happened to him to bring it all on"
My mum even told me I don't deserve the DLA I've been awarded, she said my sister (who is a single mum) deserves 10x that much.
I think the problem is that DS is highly verbal and a clever boy. The outward signs of his autism are quite subtle most of the time, but his sensory needs are quite high. All summer, I've been under pressure from my mum to take DS places that I know he will find difficult: parks, town, play centres. I have obviously explained about the meltdowns that result from a sensory overload, and my mum has seen them for herself, but she is insistent that we must "get him used to it". At the moment, DS has just turned 5 and he just doesn't understand that there is anything wrong with him and is impossible to reason with, so I am just trying to help him stay calm by avoiding triggers.
My mum has very kindly been taking an afternoon a week off so she can take us somewhere during the summer holiday, and this has turned it into a battle. DS is so much better off in quiet places like the woods, as he loves nature and the outdoors and I don't have to watch him so closely as he has no sense of danger, particularly during meltdowns. He can wander a bit ahead, for instance, which he couldn't do in town.
My mum and I have ended up having a semi-argument every week. She is nagging and nagging me because she wants us to take DS to Butlins in the school holidays. My stepdad has come into some money and wants to take us all away. Again, really kind of her, which is why I feel so awful. But she won't consider anywhere quieter, and thinks DS will be fine because she'll be there. She's even started to talk to him about it behind my back, making him excited etc. I have said no every time it's been raised, but she just won't let it go.
But all this has started to make me doubt it too. Is an ADOS test infallible? DS is completely unable to cope at school and I think the teachers and other professionals working with us have suspected autism, though no one has said so outright.
Is it possible to have scored highly on an ADOS and for no one to believe you are autistic? Is it just ignorance?
I'm so sorry, this is much longer than I intended it to be! But TIA for reading and any responses.