@Mamabear0202believe me I’ve researched until the cows came home! I’ve always eagerly accepted any help and support, and I’ll continue to do so. He only started nursery in September and I have devoted so much time to this and therefore already secured him a 1-to-1, and I started on the ECHP process long before he started nursery. I have believed there was something going on with him for a long time, way before I was able to convince any HCP. The only reason he was referred in the first place was because I begged the HV to refer to a paediatrician. She said she couldn’t as he was scoring fine on the ages and stages - the 2 year one as that’s the last routine one in my area. But she agreed she would come over and do an extra 2.5 year one at the earliest point she could and hopefully this would mean he met the threshold for referral - and luckily he did.
it’s hard to explain my son and why I’ve always known he’d need help - he never had any of the classic neurodivergent signs and traits. He’s just very different. I know it’s not just me that thinks this, as when we got his first paediatrician appointment she said that he didn’t meet the criteria to justify a MDA referral but she just had a gut feeling about him needing an autism assessment. I know I sound very critical of the whole process on this post, but in real life I make a concerted effort to create positive relationships with HCPs - I don’t think he’d have been referred until he started nursery this year otherwise. I developed an unusual physical illness as a teen, so I learnt how to play this game very early on!
As I’ve said, I don’t necessarily disagree with the diagnosis. But the reasons given just don’t seem to apply to him. One example is that they said his receptive language is very poor, and that he can’t understand two-step instructions - total nonsense. He’s had a year of private speech therapy, I know very well that he understands complex instructions. In fact, earlier this year he was denied NHS speech therapy at the NHS SALT assessment and one of the reasons was he understands very complex instructions and sentences for his age!! And of course they have this report on their system, I assume. I tried to explain that the issue is really that he understands just fine, but just wants to do his own thing and will ignore things/people he’s uninterested in (surely a sign of ND anyway!!). I kept saying this, but they just kept repeating that he doesn’t understand. So now I’m getting a report and resources all about how to help him understand two step instructions… but he already can. What I’d really like, and what I’m much more concerned by, is his unwillingness to follow instruction if he doesn’t find it interesting.
Another reason they gave is stimming. Except that… he doesn’t. I asked what stimming they’d identified, and they were under the impression I’d reported that he stims in my questionnaire. I hadn’t, because he doesn’t. I said that I hadn’t, but they just left it there - I didn’t push it because, like I say, I want any support possible and was hopeful a diagnosis would get him something.
I feel like we walked in, and they immediately decided he was autistic and then just invented reasons for it. And if so, fine - I agree! His behaviour is odd, for lack of a better word, in ways it’s difficult to put your finger on. But it’s just now he’s got the diagnosis, but no support or resources that are actually relevant to him. It just feels underwhelming, I suppose. And it leaves me a bit confused with what I can do next to help him.
that makes sense @flawlessflipper- and it was very interesting to see him in the assessment, as his behaviour was slightly different to how he is at home. But I did repeatedly ask for clarification on which diagnostic criteria or whatever you call it that he was hitting, but it just made little sense. I suppose I was hoping I’d come out of there with more of a solid, specific idea of what exactly is going on in his head and a plan for how we can help his development, but I came away more confused than ever. I guess I probably got my hopes up a little too much.