That ASD needs to be better categorised

But then you're lumping those of us with moderate support needs with no learning disabilities in with those who do work full-time, live fairly independently, etc

There's a huge in between that's getting ignored here

As much as the “diagnosed at 53” group don’t in your opinion have the same level of need as your son, I think it’s important to accept that some of us have kids who are more complex than yours, and don’t think that makes your son more or less autistic, or less worthy of support.

My son wouldn’t know what a potato is, nevermind chop one wrong - we wouldn’t allow
him the knife.

He may not fill the toilet, but that’s because he’s not toilet trained and potentially never will be.

I wouldn’t cure him if one was available, and despite his high needs I am grateful that we don’t have to worry about whether he’ll ever walk, or eat without being tube fed.

It’s not a competition, and people diagnosed later in life, or with different struggles to our children, still struggle.

God the things I could have done had I had the support your son is accessing! Instead I was just seen as a weirdo with failure to thrive. But the fact he is able to academically achieve means he doesn't have a learning disability, and as someone who is also autistic without learning disabilities I agree that classification is important and that resources should be given to those with most need. I think moving from a system where we recognised autism without learning disabilities (previously Aspergers) and autism with, and instead creating meaningless 'support needs' categories, has been detrimental. I would feel guilty having lots of funded support knowing there were autistic people with comorbidities who weren't receiving the right support.

Firstly thank you @Noras for giving me hope that my cognitively able but severely emotionally delayed ds might eventually go to university. He loves maths and music but at 11 needs constant supervision.

Autism definitely needs more categories. I have 4 dc who all have "level 1" autism. The categories keep changing though so one was diagnosed with Aspergers syndrome, one with level one autism and 2 with autism with low support needs.

I think it should be autism with whatever co morbidity so someone like my ds1 would be just autism, my ds2 would be autism with sensory processing needs, selective mutism and mental health problems, ds3 would be autism and adhd, and ds5 would be autism with emotional development delay, sensory processing needs and pica. People with classic autism would be diagnosed as autism with learning disabilities, pica, non verbal etc.

I always feel like a fraud when I say that my eldest is at university. I don't think it would have been possible if he'd been born 30 years earlier, with no internet, unlimited phone calls, amazon prime and video calls. But somehow he has made it through the first term and we have only once had to rescue him from a random train station and only once have I had to send him an emergency delivery of socks because he ran out of money near the end of term and forgot to keep some to pay for the washing machine.

At the same time, most people don't believe me when I say my 11 year old has the Aspergers kind of autism, because in many ways he is a large toddler genius who likes to hug random strangers.

OP, you said:

Also why does ASD present different in girls and boys? All other illnesses present the same eg schizophrenia biplor even ADHD?

This isn't quite right though, ASD doesn't always present differently, and while people do talk about the differences in the ways girls and boys sometimes do present, this is something seen in other conditions which are diagnosed based on observed behaviour (rather than blood tests etc). I don't know much about schizophrenia or bipolar, though wouldn't be surprised esp for bipolar, but ADHD certainly has what people call a "female presentation" - the thing is that really, to talk about gender in relation to these conditions is really more of a sociological discussion than a medical one. It's not that there are actually different symptoms, it's more likely that the socialisation that young children receive and possibly some biological differences mean that girls and boys tend to present in different ways and also that behaviour which could be indicative of some kind of diagnosis is interpreted differently in girls and boys. For example an ADHD girl being seen as "just chatty and bubbly" whereas a boy with the same behaviours is "disruptive and distracting".

There are autistic girls who present the "boy" way and autistic boys who were missed because they have more of a "female" presentation. These are more tendencies than strict rules, and observed differences in the same way people have beliefs/observations about neurotypical children, like boys are more likely to enjoy playing football and girls are more likely to enjoy colouring in. I know of two children who present very similarly, but one was told "there is definitely ADHD but we don't think he is Autistic - we can revisit that later" and the other was told "She is definitely autistic and there is mild ADHD but the autism is the main factor". There is bias in diagnosis as well as in stereotypes.

You also asked about data e.g. around sensory processing differences - there is quite a lot of research and data around this although I don't have a lot to hand but if you go into google scholar or any other research search platform you can find this. I am always hesitant to suggest AI because it tends to make things up, but sometimes it can be a useful starting point if the language is difficult to follow, which I find it often is. The other place to find this kind of info is to find some kind of science communication platform that is doing a Q&A session on autism, sensory processing or behavioural training (exposure therapy is a form of behaviourism).

In terms of exposure therapy, I understand this is one approach used in ABA, which can be controversial, and the other therapy which relates to autistic people and sensory processing is OT. With OT I have seen some suggest exposure therapy but with caution - there is an element, as you said, which applies to everyone, where if you avoid something it becomes more difficult to tolerate it and this can also apply to someone with sensory sensitivities, so in this sense exposure may help this kind of difficulty, particularly if the sensitivity is causing the person difficulty in terms of accessing something they want or need to be able to do. However most OTs do also stress that it is also genuinely true that people have different levels of tolerance for sensory input in a similar way to the way that people have different tastes, and this cannot necessarily be changed. If you think about strong tastes like blue cheese or olives or marmite, anything you really dislike - you could probably learn to tolerate it if you really had to, but it is unlikely that you will ever truly like it, and that is OK - we all have different tastes and there is nothing wrong with that. For something like audio sensitivity, it can also just be that the threshold for pain or stress etc is in a different place. I have mild audio sensitivity (I have heard this can develop as a sort of compensation for glue ear in early childhood, which I had a lot) and it is incredible the amount of relief I get sometimes just from closing a door on noise or wearing earphones etc. It's a bit like when you have toothache treated at the dentist and suddenly you feel so much lighter for not being in constant low level pain that you'd almost stopped being aware of but it was affecting you anyway. So the other principle OT works to is getting around or finding ways to approach life with the difference that the person has, and they do that with sensory processing as well. There isn't likely to really be a data driven answer to this, because it's hugely individual. You can only observe your own child and see what seems to help them vs make things worse, if they can't communicate that to you directly.

Yes that's a good point. But you could make the same argument about the cut-off for diagnosing autism at all in the first place. You have to meet the threshold - there's always a cut-off point.

Sorry that was a reply, but I've lost the post I was replying to.

I don't feel particularly strongly either way, but I understand the other argument against splitting the diagnosis is because it is too difficult to draw a clear line as to where one category of ASD starts and the other one begins. And if you choose an arbitrary measure e.g. IQ then you end up with people who are near the borderline and don't get their needs recognised because they don't fit clearly into either box.

This is also part of why Aspergers was dropped because it was not being used consistently in diagnosis.

No, you are right @BonneMamanAbricot, there are three diagnostic levels or categories of autism. You can check the DSM / Google it for further info.

Because it’s an entirely different thing! Terrible argument.

Yes - and this is the issue we are discussing... the fact that there is no scale or categorisation.

Re your friends: were their children diagnosed years ago? Or abroad? Or maybe through a private company that evidently does its own thing?

OK, you're right and I'm confused now, because I have multiple friends with autistic children and they all refer to their scale - but now looking it up, the NHS doesn't use scales in assessment but gauges disability using universal criteria. So as far as I can see, if you're on the spectrum, you are diagnosed, but assistance is provided based on symptom severity rather than an assigned scale.

YANBU I have ASD and I agree.

@NorthenAdventure yes, there are levels but the NHS/most private providers in the UK don’t use them.

Are there? I thought this has changed in recent years and now it's simply 'autism'? If I'm wrong, thanks for the into. Why wasn't my son given a classification though, in that case? He simply received a diagnosis of autism with no classification.

There are already level classifications in autism and that reflects the difference in severity. The argument won't change because it is still the same diagnosis. Most illnesses and disorders have levels of severity. I work with someone who has diagnosed OCD but is high functioning, and I have a family member who has been on antipsychotics and hospitalised for OCD. That's not to say it's a different diagnosis.

You can't get lifetime awards on pip. Longest is 10 years

I don’t think anyone is saying it’s all the same. Infact the opposite in that everyone is so different putting it into neat categories just wouldn’t work.

what we need to remember is it’s not a race to the bottom and everyone should ideally be supported to be the best they can

I think the split is more living independently/not living independently rather than profound autism

Because people are refusing to accept that there is a difference in autism.

You could have level 1 and level 100

But people on this thread are trying to claim that it is all the same (or some are trying to say those that have jobs and marriages but mask are worse off than those who are doubly incontinent/non verbal etc)

Okay, and some people with cancer have Stage 1 and a same-day operation with local anaesthetic, and some have Stage 4 fatal cases. It's still the same illness and people understand that there are different stages and levels of severity, so why does that not apply here?

If your son is able to follow a simple recipe, and cut/prepare vegetables, and actually even attend a university - I don’t think he should qualify for any lifetime reward.

I’m sure he may need support for life, but the level of that support isn’t as substantial as a young person who isn’t able to do any of the things you describe.

I would take slimy potatoes over shitty walls.