OP, 100% with you! I do understand the academic rationale (to some extent) but IMO getting rid of the diagnosis of Aspergers/HF autism was a mistake. Autism is a developmental condition that means that everyone with a diagnosis may share some characteristics and challenges, but to say (as so many very articulate and highly functioning autists do) that someone who is capable of going to university independently, of having relationships and a family, of holding down a job, faces the same challenges as someone who has massive social interaction issues, someone who cannot communicate functionally with others, someone whose autistic focus means they are fixated on one specific thing to the detriment of everything else - it's absurd!
My son is autistic. I used to say 'severely autistic' but get slapped down from time to time by someone whose autism apparently doesn't prevent them from being able to articulate that everyone on the spectrum is severely affected by their autism at times. Ok, so I've moved onto the phrase 'profoundly autistic'. Sometimes I just ditch the ASD and explain (oftentimes while I'm hanging onto him in a supermarket as he lunges towards the shelf of whatever he's fixated on, or hammers my shoulders with his fists because I'm not letting him, or lies full length on the floor) that he has learning disabilities. (He has that, too.)
My son was diagnosed aged 2.5. To me and my DH (who actually works in a related area) this didn't come as any great shock as we'd been seeing things he wasn't doing, and things he was, for a year by then. Later we also sought, and got, a diagnosis of significant LDs (absurdly, he hadn't been assessed/diagnosed for that earlier and was already at a SS for significant LD by then). He may also have ADHD but this is much harder to diagnose with his lack of compliance and cooperation! He is now, thankfully, continent but was in night nappies until about 10, and day until 7. He has absolutely no sense of personal safety in terms of water, electricity, cars, etc. His fixations and obsessions make him anxious and normal life impossible. His largely non-verbal communication means that very few people can understand him, despite the wide range of communication devices and means he's able to use, so when he has to rely on strangers for his needs, he'll be so frustrated. (I can't bear to think of it.) He won't be doing GCSEs of course. His school is great and I think they should push him more as he's actually starting, at 15, to be able to read and write a tiny bit, but a lot of what he does is aimed at what we all laughably call 'independence' - because he never WILL be independent. He has OCD. He has a massively limited diet and is underweight. He can be violent, to us, teachers and to himself. He's absconded from home a few times and we lock the place down like a prison.
Please tell me, middle-aged newly-diagnosed professional with a family and a shiny new lanyard, how much in common does he have with you? And please stop telling me not to use phrases like 'highly functioning' or 'low functioning'. I know very well what I mean and I think you do, too.
OP, there IS no 'autism community' as far as I'm concerned. Parents like me and my husband have been driven out by identity-driven and highly articulate people, occasionally self-diagnosed, who tell us we're ableist parents, doing it all wrong, or that we're not allowed to say that our child might be a tad more severely affected by autism than they are. I had enough of it a long time ago.
What I would like any casual readers of this thread to take away is to think a little about the massive surge in diagnosis and resultant strain on an already broken system. To ponder how useful it actually is to people like my son, and parents like us, when someone in middle age, who has perhaps had jobs, relationships and got on fairly ok in life, to seek a diagnosis and then go on and ON about it. Because over the last few years, I've come across more bewilderment and incomprehension when I say of my son 'he's autistic'. Members of the public who don't have an autistic family member seem to think autism is something else, something different to the way my son presents. And I wonder if this is because there are so many very motivated, intelligent, highly articulate people who are loudly proclaiming their own autism.
So yes, I'd welcome a total overhaul of the way it's categorised. I understand that the more research is done, the more it's thought that there are probably multiple factors involved in autism being present, and probably multiple ways of being autistic.