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.

I agree that it’s a really blanket diagnosis. I work in a school and there are loads of kids getting diagnosed at age 14 and they don’t show anything that suggests autism, but parents have pushed for a diagnosis. Vs some students who will never live independently. My nephew is four and it’s already very evident that he isn’t going to live the same life as his brothers.

Very well said.

By calling it a label you're just minimising what it is. Would you call asthma or a sight impairment a label too?

I’m sorry that this has been your interpretation. My usage was implied as a synonym for name or term.
PS - you know nothing of my own experiences or potential neurodivergence

Fucking right I hate it.

Right now, I feel like I’d be better off dead. Not planning to do anything but I’m definitely not having a fun life.

As long as I can remember I just wanted to be normal. I was smacked for not behaving, not doing things well enough, not doing as I was told fast enough.

fucking right I wish I wasn’t autistic and adhd.

the only thing that keeps me going is doing better for my DC who are also asd and adhd.

Theres non diagnosed asd running right through my family - my dad, my mum, my uncle and my grandpa were or are clearly autistic. I have a cousin with adhd and two of my kids have asd and/or adhd.

I would call them diagnoses, for which the specific name title or label is given as “X”

This is another of my issues with Suzanne O’Sullivan - she talks about the stigmatisating effect of being “labelled”. If we treat it as a stigmatising label then obviously it will be stigmatising! There’s no inherent reason why a description of a difference should be stigmatising.

We used to think left-handed people were witches, we managed to get past that one.

It’s a diagnosis.
it’s not a label. A label is what you put on a body in a morgue. It’s what you put on an object in an auction. Not on a live human being.

This is 100 per cent my experience too.

This is the impact of overdiagnosis- not MISdiagnosis, but overdiagnosis

A dx of being autistic is being expanded / diluted to the point it soon will be “typical”.

“If we treat it as a stigmatising label”

Who’s treating the term “label” as stigmatising here?

There’s also an element of hypocrisy around the use of the term autistic versus “with autism”

”with autism” implies medical language / diagnosis

”autistic” implies identity / assimilation of a label

I’ve no issue with either term it’s just interesting how the more vocal side of the community might take issue with “label” in this context

I have two family members similar to your son, both with ASD. I don't know anyone with Autism who doesn't need support honestly.
I see more about ADHD being late diagnosed personally.

@Noras posted:

"I think that I am ND myself ... However I don’t feel disabled but just different. …. I struggle to write and was the last to be picked for games ... However I can cope as long as I can recharge."

This is interesting. I can identify with all the statements you made above. My explanation is that I'm an introvert, and I never cared for pointless team games like netball, and I'm just not very good at writing.

People talk about distinctions between levels of ND diagnoses. Does the idea that (NT?) people are introverts or extroverts apply to these diagnoses? I have no idea or personal experience...

I agree with you op as someone who has a child that will be able to live independently. I think years ago my child would have been diagnosed asperges. Completely understand why we can't say that person's name anymore but maybe it should have been replaced by something else.

I’ve experienced this too.

Highly unlikely she'll be able to live independently. She forgets to eat and shower if we don't remind her. She also suffers from seizures.
She can probably live more independently than DS but I doubt she'll ever live fully independently. She can use public transport for example but only if someone goes with her the first few times.

If education was better funded the units might not even be needed. I suspect a lot of children that would have coped in mainstream years ago can't now due to general underfunding (less staff and less support) and ridiculous ott behaviour policies in secondary schools.

Why do you think parents are pushing for a diagnosis (and getting one?) if nothing suggests autism?

A few reasons I can think of from my experience why it might be evident to a parent and not a teacher (other than the obvious one that the parent knows their child much better):

>academically high performing so fly under the radar
>after school restraint collapse (so common amongst the ND kids I know)
>ability to manage well in the highly structured / rule driven environment in school but struggle when structure is removed (weekends, holidays etc)
>masking at school / unmasking at home
>better ability to converse with adults than peers / social communication challenges less obvious to teachers.

My question back would be what help would it bring to autistic people and what would the diagnostic criteria be? I have two very different autistic children and have no idea how they would be categorised. One can learn really difficult information about their special interest, but is so unable to learn anything outside of that interest that no school will offer them a place.

It also risks holding back someone of they have a lower prospects diagnosis, but then do better thsn expected. Would you move up a level if you were pre verbal at 5, but speaking by 8 for instance?

As the “parents pushing for a diagnosis” thing has come up - to teachers I probably looked like one of those parents as the impetus came from me (actually a family friend) not the school (who had never raised any direct concerns).

I was very clear with the assessors that I wanted an assessment not a diagnosis and I was far from convinced at that point DS had ASD (I was pretty certain about ADHD). So the assessors were under no pressure to diagnose from me. With the benefit of being better informed now it’s blindingly obvious to me he’s autistic but I couldn’t see it until I understood the presentation in a child like him.

Also the assist told me lots of parents (in their private practice) struggle to come to terms with diagnosis so again, this just doesnt chime with they idea that there’s swaths of parents out there who are just trying to get a diagnosis for kids who are fine.

School staff are notoriously shite for being able to spot neurodivergent kids, especially ones that mask. They have about an hour's worth of SEN training and think they're qualified to dismiss all parental concerns and decide that kid is just making it up.

If that child has gone through the rigorous process of obtaining a diagnosis and the pages and pages of questionnaires, and 3-5 hours worth of assessments with multiple qualified medical assessors who actually understand autism ... The chances are that the highly qualified people that diagnosed them are right, and you are wrong.

It’s complicated. It’s not simply a matter of saying “nothing suggests autism” and the difficulties you outline are very much real difficulties.
The question is more about whether the difficulties you outline are helped by having a diagnosis- and whether or not they warrant a diagnosis or are better considered under the wide variety of normal human experience. Formulating them under a “diagnosis” runs the risk of taking away an element of control

Reasons parents seek Dx where school aren’t seeing a problem are complex and multifaceted. It can be a need for support. For validation of their parenting abilities. To offer an explanation to other parents particularly where behaviour leads to embarrassment or shame in public situations. It can, in certain jurisdictions, result in greater likelihood of a EHCP equivalent and grammar school placement in NI. Parents know their children better than anyone and 99% of the time the motivation will be for a better life for their offspring.

ND is hugely under diagnosed particularly in girls.We’’ve been told this over and agin by professionals. Pre 14 my dd masked all her adhd and autism symptoms ant school although the wheels were starting to come off. Even though she had an NHS dyspraxia diagnosis( the school just ignored) and reading old school reports it was clear as day she also had adhd and autism but she just didn’t present like boys or chuck chairs around. So up until 14 my daughter allegedly didn’t show anything that indicated autism or adhd. After that when the repetitive behaviours, social difficulties and sensory difficulties couldn’t be masked anymore and changed to cutting so bad up her legs and arms under clothes the scars make her look like a ruler alongside severe Anorexia , self medicating and suicidal idealisation CAMHS insisted on an autism/ ADHD diagnosis. She has ended up under a CETR, continuously hospitalised with an EHCP in supportive living. So many professionals have told us the negligence and ignorance re how autism and ADHD presents in girls has lead to it and it’s very common.

Yet still posters spout ignorance in how autism and adhd can present in girls and how it is under diagnosed in this country.

No parents seek diagnosis because they are desperate to help their children, want the info that comes with diagnosis and also to have treatment and care adjusted which is easier to obtain with diagnosis. They also want their children to have much needed answers to help them through life.

What treatment?

“Parents know their children better than anyone and 99% of the time the motivation will be for a better life for their offspring”

This is covered under my blanket statement above. I am sorry that you and your daughter have had this experience and hope she is getting the support she needs.

I stand by my opinion on overexpansion of the Autism category and the risks associated with overdiagnosis at a population level for those who need support.