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.

If you read the book she very much owns her lack of expertise but also talk about the dangers of siloed thinking - when you are a hammer everything looks like a nail, etc. She talks about screening processes and genetic risk analysis rather than the specifics of cancer per se. It’s more about statistical understanding rather than proposing to be an expert on cancer.

Obviously. I’m not an idiot. In which case they have a flatter profile because they are lower on each trait/symptom category scale within the spectrum. They aren’t at a non-existent severe end of the spectrum….because it DOESNT EXIST!

Sounds circumstantial at best. So I'll assume that's a no to any proper evidence that diagnosis is leading to the erosion of services.

These services are based on needs not diagnosis. I'm not sure what it is that people don't understand re having a diagnosis does not = support/pip/ehcps/mobility cars/ insert other random thing here.

No one is getting support they don't need from these services. You can't get it even when you do genuinely need it without legal action/tribunals/complaints that drag on for years.

I think recognition of everyone within the wide spectrum is a good thing, but I have noticed a bit of a divide in certain corners online between the ‘high-functioning’ (lack of a better word sorry) highly articulate autistic adults and parents/carers of individuals with profound autism and extremely high needs.

I’ve seen mothers of severely disabled autistic children having their posts reshared and torn to pieces by autistic adults because they’ve dared to speak their reality about it being hard or exhausting.

It seems this often extends to views about how autism is categorised and researched. The former group can be insistent that ‘autism is autism’, societal acceptance is the only thing needed and that any research to try and pinpoint origins, causes or what autism actually is are deeply unethical and unnecessary.

Can you show me some non- circumstantial evidence that they ARE getting the services they need?

In NI the school based autism services has been eroded to the point that they now offer “advice only”.

In ROI there is no autism specific service in health or education. Primary Care waiting lists are reaching 5-6 years in some areas- this has become a “dumping ground” for all kinds of mild to moderate difficulty. There are multiple articles out there on this if you’d care to do your research. The reason? Increased demand.

Not read the book but I’ve listened to her speak about it, read interviews with her and articles she’s written. So either I’ve got the gist of her core argument or she’s exceptionally bad at summarising it.

”find the dx validating” sounds so exceptionally patronising. No - it’s made a profound difference to me. I’ve made substantial changes to my life as a direct result and my QoL is much improved. We are much more supportive parents to DS thanks to his diagnosis.

It was like we were trying to drive a stick-shift like an automatic and wondering why the engine was overheating. Did we need to pay a mechanic to look under the bonnet to tell us? I guess you could argue not but without it I can guarantee we’d still just be trying to get through life by pushing the accelerator to the floor and listening to engine scream.

I’m not speaking to your individual circumstance by any means and am glad that the Dx has led to improvements in your QoL. My argument (and Suzanne’s) speaks to the wider statistical phenomenon of over diagnosis. I recommend reading the book, it’s quite sensitive and nuanced and respectful of individual experiences.

I’m trying to ask this in a curious and non judgmental way (but realising that on social media it’s hard to read the tone) but if autism diagnoses hypothetically speaking was to reach 1 in 5 individuals, would you not feel that your experience had been invalidated somewhat? Honestly just curious.

It's not a competition - having more accurate and specific terms is important because the experience and needs are utterly different and it should be possible to discuss the specific client group accurately (in lots of contexts - professional and in terms of peer support and carers/ siblings/ parents seeking peer support) without having to obfuscate, not because one group needs to prove they are subjectively experiencing life as harder than another group.

The cynical person in me says that the more higher functioning individuals want to bundle people into the same tub because they are frightened of support being taken away or having their needs minimalised. As someone who is on the diagnostic pathway myself with a child at the severe end of ASD who needs 24/7 care with every aspect of life, it is understandable. I see both sides and part of the reason we are here is because the world is not compassionate about neurodiversity and disability. I just don't think the group that supports a flat ASD diagnosus realise how damaging their views are to people who have very high support needs and exhausted carers trying to get their needs recognised. There needs to be a middle, compassionate ground here.

I completely agree. My 5 year old son has a ASD diagnosis. He has no intellectual delay and is smart. He struggles tremendously in school and the LA are about to issue a draft ehcp. He has massive issues with impulsivity so probably ADHD too, although not diagnosed yet.

Personally, I like to refer to him as neurodivergent, because I think that's a better description of his issues.

And yes, people on this thread are correct that you won't get an EHCP with a diagnosis.

Your child needs to fail significantly in school as evidence and even then you still need to get down on your knees in front of the LA and beg for their help.

I agree that the new style of categorisation isn’t very helpful.
I think the idea behind the new categories is related to level of support required ? (Someone please correct me if that’s wrong).
But equally within the broad spectrum of autism , while there are many similarities between autistic people, level of functioning and things like non verbal ability, versus verbal capability (and all the variations within) often have very little to do with each other.

It’s worth reiterating that the term Autism is an umbrella term and there is no single cause (although there are some known genetic markers and knowledge of those are increasing with research ) which is why it’s so hard to predict outcomes.

I certainly think it’s true that more people are being swept in to the diagnostic net at either ends of the spectrum.
Children used to be tagged with global delay and dropped in to SLD schools without much opportunity to learn. Adults would be tagged with MH labels and given inappropriate medication.
It still happens but not as much as it used to.
One upside of more awareness but of course less resources to deal with any of it so we’re left fighting like cats in a sack for the little that’s left

Agree. I also think the fact that many of the parents caring for severely disabled children are often autistic themselves gets forgotten too.

I said even the people who need these services aren't getting them without a huge fight, so why would I be providing evidence they aren't getting services I agree they aren't getting?

If more people need a service and that's leading to alleged erosion, what do you suggest is done? Less diagnosis doesn't = less need. It just means the same amount of people have those needs but don't have a diagnosis of anything. How does that benefit anyone?

Yes you're right. I remember having some disability training at work one time and a speaker came in to give a talk, and she said that the word disabled is "ableist" and it should be called "differently abled" instead.

Unfortunately this patronising bullshit is everywhere and it does disabled people a genuine disservice by minimising their struggles.

I am classed as disabled as I have endometriosis. No amount of societal adaptations will minimise how debilitating my condition can be particularly when I'm stuck in bed for days on end due to my chronic pain. What I would like is a complete cure so that I don't have to deal with this shit anymore and I'm sure a lot of other disabled people will feel the same about their conditions.

This is another problem with the new means of categorisation- the broader and more heterogenous the term, the less we can conduct meaningful research on effective interventions for those who fall within the category.

Or go to tribunal to get the actual law applied instead of the LAs policies and return there every fucking year after every bloody annual review

I’m sorry you’ve lost me there with that wording. Blame perimenopause - another label that has exploded on social media 😉

My DS1’s autism is almost certainly not genetic. He was born extremely prematurely (on the cusp of viability) and all of his neonatologists and consultants agree that his autism is almost certainly as a direct result of the conditions surrounding his birth and the months of invasive treatment keeping him alive as his brain finished forming (these are my exact words, not theirs, but the point was made my them). When I mention this to other people it can make them bizarrely angry. I have no idea why my son’s diagnosis would anger them, but I’ve been told I’m ’talking shit’ or ‘utter bollocks’ or ‘he was born at 24 weeks because he’s autistic’.

If we’re informally categorising ASD with numbers 1-3 then my son is a 2. He’s verbal and mobile but will never live fully independently. I worry desperately for his future because he can’t work and doesn’t understand how to treat people appropriately. We are going through a very rough patch currently because DS2 (NT) is learning to drive and applying to university and DS1 can’t understand why these options aren’t available to him also. He hates watching his younger brother embark on the young adult life that he too deserves. Yet others with the same diagnosis are affected far more severely than he is.

I do find it frustrating that the word ‘autism’ covers such a wide umbrella. DS2 has several friends who are autistic and are in mainstream education without support and perform with him in mainstream theatre productions without support. They all know his brother. They were all perplexed recently - to the point of disbelieving - that DS1 has the same diagnosis as they do.

And what is the ‘autism community’? My son can’t represent or advocate for himself so I’m not sure how other people can when they don’t know him, or his struggles, or his needs.

And the huge in between? You want to put people like me who do need support in with people like a friend of mine who lives independently and works.

Definitely needs categorising.
The low/high functioning or severe/mild thing seems to cause such offence but we still need to be able to differentiate between someone who needs 24/7 support, can't communicate or live independently from someone who works, has a family, struggles socially and is a picky eater (just an example...not meaning to cause offence!!)
Maybe we just come up with as Asperger's type naming system instead?

The word "spectrum" is the current theoretical paradigm (coined by Lorna Wing in the '80s but not adopted as the dominant paradigm until the DSM 5 twelve or thirteen years ago). It's no more set in stone as a definitive, objective fact than any other scientific or academic paradigm and may change when there's a better way to diagnose than simply describing behaviour.

Before the spectrum paradigm there was Asperger Syndrome and infantile autism and pervasive developmental delay, recognised as three separate conditions with commonalities.

Before that there was the childhood schizophrenia diagnosis - autism was considered under the umbrella of schizophrenia until the '70s, but few people today - whether autistic themselves or parents, carers or professionals - would have time for anyone claiming that it's all schizophrenia and there's no point defining autism as different from other types of schizophrenia!

The most recent diagnosis criteria for schizophrenia also rejects subtypes - there is no longer such thing as paranoid schizophrenia, it's all schizophrenia even though "paranoid schizophrenia" and "catatonic schizophrenia" are very different... What if autism was still under that heading and considered a cluster subtype?

The latest hypothesis or trend is to widen things still further and replace "the autistic spectrum" with a neurodiversity spectrum, which some claim includes bipolar disorder and foetal alcohol syndrome as well as ADHD and everything currently within ASD. That might, pr might not, be the dominant paradigm in ten years time - or things might go in a different direction with more specific knowledge of different relevant genetic causes.

If you look at schools though and the mainstream question, it is not always about how severe a child’s autism is, but what effect they have on other kids. DS2 had a boy in his class who could walk, but still in nappies in Year 6, could speak about 5 words and he was fine there and the kids were nice to him and his parents wanted him in main stream for as long as possible. The key thing was that he would schtimm but never lash out or be violent and a 1:1 TA worked just fine and actually the other kids were fond of him, his younger brother was in the same school and it all worked out well. Contrast this to another child who was not in nappies, was quite academically able when given 1:1 attention but was extremely violent towards staff and other kids and so did have to go to a special school after Year 2. Who is to say which form of autism is going to be more disabling long term? It is conceivable that the lashing out child will get a job one day and learn to manage emotionally as he did not have intellectual impairment. It is really very difficult to generalise. And again the child who stayed in main stream for- the parents struggled less at home because he was small, light, placid and OK with others.

Try telling that to parents I had to deal with.

one hand a parent will say they didn’t get an A because of their diagnosis and on the other hand I am being beaten because it’s only ‘mild’ and they underachieved.

And the massive in between? We seem to be ignored here. Everyone talks about those needing 24/7 care or able to work and live independently. So many of us fit into neither group. I'm nothing like my friends who are able to work, have relationships, etc. But people are trying to lump people like me in with them