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.

Yes. I agree in principle, OTOH your child would possibly be diagnosed with global developmental delay, non verbal or speech disorder, learning disability, and autism, the problems wouldn’t be solely autism but at put down as ASD.
My uncle had all the problems above and was labelled reta—ed or handicapped, terrible I know, in the 80’s as children we were taught that uncle was handicapped.
ASD is a huge spectrum and the people who are diagnosed later wouldn’t have been as impacted as others more severe. Had they been spinning in circles, shaking with sensitivity, rigidly lining up toys, it would have been noted.
My words may not be correct before anyone jumps. My apologies.

In my son’s case he was meant to go to sen school (classed as needing 5:1) but we kept him mainstream and I also gave up life to teach him at home as much as possible. it’s not surprising that he is studying the same subject as me at university.

At aged 11 he was not able to string words well and remains on the 1st percentile for receptive language / semantic etc. The upshot is that he can’t navigate people’s intentions / meanings etc. He also has motor coordination on the 0.5 percentile so he’s ASD / complex needs with bowel disorder so I m in charge of his toilet issues. He was unable to swallow for 3 years and bowel incontinent until aged 11. He now has chronic constipation with the results of that eg I unblock the toilet every 2/3 days. He has some hearing loss.

The issue for me is that he struggles to belong in this World and would not even know to join in social media / claim benefits / organise a social live without support. He could never advocate for himself as things stand we are in debate (agency queried why social services said none ) re capacity but I think he has that with support.

I guess they do class it in a way eg the consultant wrote re the ASD will struggle with day to day life tasks or something like that.

I’m guessing that some people with ASD would be upset to have their capacity queried. This illustrates maybe the difference in needs.

A child with PICA has PICA, a child that doesn't understand instructions and can't toilet train is highly likely to have a learning disability. Both those conditions are very serious. A learning disability is often far more debilitating than autism.
I think the issue in a lot of cases is that people assume autism as the primary disability when those with 'severe' autism most often have a primary disability of learning disability.
Autism is spoken about so much, whereas learning disability is often ignored, despite its huge significance, and it is confused with learning difficulties. Many people don't even know there is a difference between learning difficulty and learning disability.

My DH and eldest are both diagnosed with ASD. Both are scientists, both are really happy in their respective fields and totally at ease in their work. Both can be hard fucking work because of their rigidity and anxiety and quirks. Neither needs support beyond that of our GP and me recognising the need for down time and routine.

autism impacts on their lives hugely - but not in ways comparable to my godson who is non verbal and about to move into supported living.

they all have needs but their needs are not the same and I can’t see why they are categorised in the same way. How can we provide services and support for them if we don’t define their needs accurately?

There are people/children with autism that at your son’s age are still non verbal, incontinent and need 24/7 care. They don’t have a chance in hell to ever making it to uni, no matter how much support there is in place, or achieve any kind of independence, no matter how smallHow would you feel if their parents said your son isn’t autistic enough compared to theirs? Because that’s basically what you’re doing.

Having read all the comments I am still not really understanding why you all think that ASD needs to be better categorised. Is it that you all think that those who are better functioning, aren't "sufficiently disabled"? Well, we are not getting any support so we are really not taking any resources away from your severely affected children. Why is it that having an ASD diagnosis is problematic for someone who can function to a better degree?
Can somebody explain what you hope the re-categorisation will achieve?

I appreciate that ASD presents differently, and I know my situation with a DS with lower support needs who can cope in a mainstream school with support is miles away from that of parents whose DC need 24 hour a day care. But ASD isn't unique in being a medical condition that impacts some more severely than others. I have Ehlers Danlos and am clumsy and occasionally fall over; a friend who has it is a wheelchair user, on very strong painkillers, and cannot work.

I imagine that parents of DC with ASD and high support needs want those needs to be properly accommodated and supported, and are worried they won't be if people expect autism to mean a certain presentation. But coming up with different names for different presentations isn't going to fix that problem, because real support requires money and time and education. I also think that young people like the OPs son - academically bright, highly verbal, but socially vulnerable - would risk being classified as less vulnerable than they are if distinct categories of autism were proposed.

I would accept that they have huge needs.

I have said that to people in that situation as at adulthood it’s looking for kids like that at expensive placements.

My son’s costs are about £30,000 social care and there’s are £100,00 special college care on a 2:1 plus etc etc.

YANBU - i have a DC with ASD who I think absolutely deserves the diagnosis but it’s a million miles away from a person with substantial and enduring support needs. I don’t think it serves anyone well to not have a lexicon for this that meaningfully distinguishes between such differences.

Completely agree OP - some people with autism can get PhDs whereas others are non-verbal, unable to do any self-care, and need fully supported living facilities. It’s not the same condition at all.

In the US at least they do diagnose the three different levels, but even that isn’t enough of a differentiation IMHO.

Mid 40s late diagnosed autistic person here. I think there needs to be categorisation but in many different ways, we are all autistic - fact (I don't mean neurotypicals, I mean us autistic people). Our brains work differently to typical. But, there is a huge variation in how that affects us. I am disabled but I am absolutely not disabled in the same way as someone who is non verbal. The original poster @Noras is, however, seeming to say their child is in a much worse position than others, yes definitely to me, but they're brushing aside the fact that their child is at uni, something far beyond the reach of so many. Yet there are also non verbal people who can communicate very well via other means. Some people with autism will cope in certain situations not others. There are many many different differences... How do you categorise? By support needs, by communication levels, by ability to mask, by sensory needs, by abilities? Autism is the umbrella, now science and society need to decide how to separate out - but also why they are doing so. To provide support? To gain support? To explain behaviour? To seek adaptations? So many more I can't verbalise right now.

My friend has 2 children who are autistic with very different needs to each other. When people say they shouldn’t both be diagnosed either autism, she tells them to mind their business. She says they both have autism and anyone that needs any further info, like medical professionals or schools will have it. Her attitude is that their diagnosis shouldn’t be changed so that people get to say they understand and put each of them in a neat box because it’s none of their business. Other people are the issue, wanting to put their huge beaks in.

it’s more nuanced than that - my son has an obsession with the subject.

His working memory is on the 4 and 2 percentile so he has what is called a spiky profile.

I can’t go into more details but he’s not a really intelligent vulnerable ASD type more a really knowledgeable on one thing and learning issues on other type.

The S stands for spectrum... and it's a very big wide spectrum.. myself .. one of my daughters and 3 of my Grandkids age 22 to 12 have ASD and we are all different in every way.. but we all have something physically wrong with us that is connected to our ASD.

I completely agree with you, OP.
I know people closely whose adult children are not toilet trained, non-verbal and their only diagnoses are ASD, ADHD and Epilepsy ( which is very recent). How can they only have ASD?

I do wish they’d come up with a different criteria of diagnosis.

How can their diagnosis be the same as someone who is able to work, have and look after their children?

I understand it is a spectrum and affects people
differently but it doesn’t seem fair. People in the community end up fighting for different things, and the unity is impaired.
Of course people who dont have these ‘severe’ challenges want to be seen in a different way to that which the parents of those in the category above, want.

I always say that perhaps defining and finding a way of defining and diagnosing the comorbidities alongside and categorising them might be the answer.
I think some are concerned that recategorising will say they dont struggle but that doesn’t have to be the case.

The S stands for spectrum... and it's a very big wide spectrum.. myself .. one of my daughters and 3 of my Grandkids age 22 to 12 have ASD and we are all different in every way.. but we all have something physically wrong with us that is connected to our ASD.

I agree there should be categorisation. It works both ways. I am on the autism pathway and feel people will view me as a fraud a i am high functioning with a degree, husband, children, job. My experience of autism is obviously very different to someone who is non-verbal and can't live an independent life. This comparison has been very unhelpful to me and has led to many more years of struggles as i thought i couldn't possibly be autistic as i can do x, y, z. What people don't tend to see is the debilitating internalised anxiety and the exhaustion caused by constant masking. I'm not saying my struggles are 'worse' but they are so different as to be almost incomparable. The fact i function well means that i get no support or understanding for the differences I display. I have been bullied at school and in the workplace and this has majorly affected my mental health, being 'different' but without a diagnosis to help explain it all. I couldn't be more sure that i am autistic but agree that the ridiculously broad spectrum of autism is not helpful to anyone.

@SaySomethingMan but autism is all the same thing. As in, an autistic brain is "caused" by the same variations. So it must be under the same overall term. Yes, I think there then needs to be sub-sets, but what and why. That's the actual question.

It's really stressful as a parent

I do feel there needs to be some levels in support needs but the profiles are also so spiky and can vary day by day too.

My friends son will never live independently or work. My friend gets a lot of support from the state. However she worries about what will happen when she is dead. Will his siblings step in and be carers or look after his financial needs living arrangements etc

My daughter is very intelligent. Currently trying to beat her mental health issues after late teen diagnosis. She has some friends. Can work in the right conditions, can pass exams and so on. But when I'm dead will
She be a hoarder, an alcoholic, alone In dept. All this things are possible if I wasn't there to guide her. It's a huge worry for me too.

2 young people with autism. 2 very different needs. Both equally valid

DH and DD are the sort of people who come up with innovation in their field that can change the world - I bet Linnaeus was ASD.

i think the model like a wheel of measuring different skills and how much of them you have or don’t have is more useful than a linear spectrum. DH excels in his field, but don’t ask him to make small talk or deviate from his routine. Nothing good comes from that.

I think like most disorders within psychology/psychiatry you can argue the categorisation is really poor as it's so wide/usually a catch all diagnosis.
Think of schizophrenia, there's so many different ways of presenting and different sub categories. Some people argue that it isn't even a "real" diagnosis bc so broad
Same with depression.
It's because unlike a broken bone we can't say oh, it's to do with low dopamine/neurotransmitter/brain differences. It's usually a hodge podge of all different symptoms and causes

I liked previous pps comparison with stroke - it's a medical term to signal there's something abnormal- but then health professionals need to investigate and be more personal in showing exactly how it affects them/their brain/their lives. But unlike stroke you can't scan their brains and see where the damage was done and what part of brain that corresponds to.. it's hard. So much overlap with other disorders too

I absolutely agree, OP - and I say that as a parent of a high masking autistic child.

I don’t think we can say with any confidence that all these different presentations are ‘autism’, and that autism is all one thing that affects people in different ways.

In the absence of much conclusive understanding of the genetic / biological / neurological underpinnings of individual people’s difficulties, I think ‘autism’ is used as a shorthand for all sorts of social and sensory and cognitive and general functioning challenges, and I’m not sure it serves anyone’s interests to have people with such wildly varying needs lumped together.

I understand the problem with categorising is that there are a lot of people who are somewhere in the fuzzy middle who are hard to place into a category. They currently get called "Level 2" in the US but even that is not perfect because again the boundaries between level 1 or 3 and 2 are blurry and where you get placed may differ massively depending on the person who is making that judgement call, and it's not an unloaded decision either because it determines things like funding and level of therapies which can be accessed. The fact these categories are subjective and not easily reproduced is a big part of the problem. The only thing (if I understand it correctly) that is robustly evidence based is the fact that they are saying both Level 1 and Level 3 autistic people (and everyone in the middle) have the same thing going on underneath.

It is easy to point out the differences between your DS and the hypothetical 52 year old late diagnosed man, but there are not just those two types of autism, and there is not a clean dividing line between the two.

I think it’s hard for anyone with ASD no matter the grade. When DD was diagnosed we were told she would have previously been diagnosed with Asperger’s or ‘high functioning’ autism. Which is great for school as she masks all day. Behind closed doors she is in constant meltdown, violent, screaming at us etc. we get absolutely no support because she is so ‘high functioning’. Every diagnosis comes with its own set of issues.

He has a spiky profile but an obsessions with his subject

Working memory on 4 and 2 percentile
pragmatic on 0.75 percentile
Receptive on 1 percentile

numerous repeat tests

executive functioning non existent pretty much

So school was very depressing

He had a scribe for exams then he tried to type - now he’s back on recordings and some amazing software ( wish he had that at school)

He knows everything about his topic but struggled to take 1 away from 2000 until aged 18.