That ASD needs to be better categorised

[Noras]

As someone with a DS adult who seems destined for supported living or maybe living independently with PA wrap around as AIBU to think that ASD should be better defined.

i read about people who managed to mask ASD until say aged 52 and I can’t help but feel that it’s a World away from our lives as carers of DS.

He is at university with 37 hours per week PA support.

There is no masking with DS. We have just returned from holiday and pretty much all the staff knew of DS by the end eg someone said ‘oh he’s your son we were trying to think of ways to help him engage in the events’ etc

He has low self esteem and really low moods.

He is petrified of the outside World so we have to facilitate any social life be it with a PA or a drop off to a safe place and then we are on tender hook a waiting to pick up.

Social services class him as highly vulnerable - he’s like a 12 year old in some ways but an adult

I or the PA agency organise all his taxi pick ups and drop offs and all his rotas etc

I organise his activities eg clubs / events any social thing

I organise his clothing / dentist / even reminders to take meds / brush teeth etc

We run his finances / he has no interest - we discuss with him and he just nods

There is no masking - he talks to himself / he can rant in an outlandish way

it seems so wrong that it’s bunched in with all this late diagnoses stuff as it’s so so different.

im not decrying all this ‘ I masked until aged 53’ but it seems like a different thing entirely. People need to understand that otherwise my DS needs won’t get his needs met eg he struggles with public transport and will need a seat so he does not get brushed against and as it is he has a shut down and goes onto a weird sleep.

Sadly people have a level of sympathy and my concern is that it’s being eroded.

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)

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

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

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

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.

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.

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

YANBU I have ASD and I agree.

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.

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?

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

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

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.

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

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.

He can’t follow a simple recipe - we are working on it so he will use vinegar for something else and make an inedible meal.

At life skills they classed him as too dangerous to use the microwav

I think that I take the experts at life skills who worked with him for 2 years and in his last assessment stated that he remained ‘requiring ongoing supervision’ in cooking. That was after2 years of professional assessments and life skills.

Slimy potatoes are inedible thanks. He will cook an inedible meal and decide that life was no longer worth living which became a safe guarding issue and then he could not stay over as he was a safe guarding risk until he calmed down.

As for shitty walls - I get shitty poo soup blocked toilets although that is better than the disgusting stench of poo pants i had until he was about aged 13. Our cleaner refused to clean up after! I can’t ask the PA ‘s so it’s down to me. If you find yourself unblocking the toilet every 3 or so days it’s a horrible job. In my life I had poo bath poor floors and now poo soup toilet.

As for university he is on 37
hours per week PA support to do so - hardly remotely living independently. Not only that but he has the expenses from that eg to stay late he has to offer his PA food etc. Many people with extremely high needs attend university! He has to go in his home city and could not go to another city as he would require 24/7 support and it would probably not work - also social services would have the expense of paying for a PA room at university. He is on so much support based on events and how he presents. There are major issues in terms of communication / understanding and he needs all his emails / meetings etc organised by PA who also run his timetable and ensure his taxi etc

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.

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.

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.

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.

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

Sure but as stated he has semantic pragmatic language on the 0.75 percentile working memory on the 4 and 2 as well as executive functioning in the same area.

He was unable to swallow until about aged 3 and also had prolonged fits for years. He also has ongoing bowel disorder.

As I keep saying I have a friend whose son has severe ASD and he’s on a lot of support so I get that. We all know severe ASD when we see it but there is a world apart from the ASD I most likely have and how my son is. ( Ed Psych knows me well and insists I ought t9 get diagnosed and he ran an ASD school)

On a different note, I’m not sure what age your son is but have you spoken to SALT to see if Carobel will work instead of a feeding tube as this is what helped my son ‘learn’ to swallow. I refused to continue the feeding tube. To be frank it’s scared me as I was confused with all the ph testing and fearful of getting it in the lungs etc. The Carobel was challenging as people tired to give him drinks not realising the issues. I think that if he had stayed on the tube it would have made things worse.

On another side note, I also think that his ASD was worsened by the glue ear / deafness at developmentally important age as he could not swallow/ had hypotonia and I think this created poor signals to the brain which is why differentiating might lead to better treatment, My son was on 80 dbls when little and also has adenoids removed / 2 sets of grommets and permanent ear scarring.

Thanks think it’s all confusing and needs better categorising

My son is ASD.

SLI ( severe on receptive 1st percentile pragmatic and semantic 0.75 percentile but sadly also has some expressive issues due to the working memory/ grammarly premium is amazing and corrects sentences with missed words etc) The issue we have is that he can’t use Dragon talk ( false starts) but then gets tired typing. Try to get a tech report done and that helps. We had one had as part of his EHCP due to complex needs.

SPD - especially to touch. This is the main issue. He was deaf for years so sound is an issue eg where is the speaker in a cafe etc.

Motor Coordination 0.5 hence my comment about slimy potatoes, We have di e huge amounts of work with fine motor and it’s improved well but onions are a beast. I noticed at Xmas that unwrapping was a slight issue as the sellotape was too tight so we helped him. I think this is adding to the sense of disquiet about the outside world as he lacks confidence. It also impacts his gait and he has an ASD walk as if he des not know what to do with his arms, He can occasionally cling to his dad when out but not often.

All these issues combine to make the problems that he has. As things stand eh cannot live independently and is classed as developmentally young and also vulnerable. He was also classed by social services as lacking capacity but he does have capacity on a subject by subject. We have written a vulnerable persons trust into our will as we just have to deal with how things are,

Insofar as education is concerned, he had a contextual offer based on his area of special interest and as you can imagine his knowledge there can be extraordinary. He was otherwise not really able to study other subjects well and was tutored to death using his DLA monies that also paid for SALT Drama and PE trainer to try t9 overcome all the above

Right, so your DC is pretty much the same as mine @Noras although my DC is still a bit younger. Mine was diagnosed with ASD with "substantial support needs" - level 2 - before school age. She was very obvious very young, and has a plethora of co-morbid conditions, and we have no idea what the future will hold for her.

Removing support from level 1 autistic children won't help her.

I do remember one day at an extracurricular SEN event where one parent came up to me and said "I don't know how you do it" and another told me that if her child presented like mine she'd consider her "cured". I think the current DSM is actually a fair representation of three sets of needs, and the problem is adequacy of provision across all of them.