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.

What’s mine then? What sort do I have? You know, the sort that makes me a target for a rapist. That sort of ASD.

The sort that makes me want to scratch until I bleed and cut myself what’s that?

the sort that makes others think I’m not trying hard enough or lazy or annoying or an embarrassment what’s that?

Not certain what you mean? What costly supports do you think are in place?

I can’t decide if you are doing some sort of reverse to be deliberately inflammatory or if you are genuinely confident that your position is acceptable. Must be the autism. NHS late adult diagnosis over 5 years ago for those who wish to grade my diagnosis credentials.

I was referring to the comment comparing masking to the job interview stress experienced by neurotypicals. Should have made this clearer. I mean how exactly would you quantify this stress? There is enormous variety in terms of how “neurotypicals” experience job interviews for starters.

This.

Whilst others have care and support needs and would use dla for that.

How are you proposing to evaluate masking? Or can we agree that if neurotypical experiences and abilities are not standardised then the same applies to autistic experiences and abilities?

What a tricky and emotive topic. I’m one of those people who has been diagnosed later in life with both ASD and ADHD. I’m married, I have a child, I have 2 degrees, I have a job. I really struggle, mostly with my job but also socially. I have a lot of anxiety. I don’t think my life is or ever has been easy. I was bullied at school. I often say the wrong thing. I spend hours laying awake at night ruminating over the smallest thing. I don’t fit in. Ever. My mental health has been terrible throughout my life.

I work in healthcare and many of my patients aren’t autistic with very high needs and I don’t recognise myself in them at all. Our struggles are absolutely worlds apart. It feels helpful to me personally to have been told I’m autistic but when compared to some of the young people I work with, it feels extremely unhelpful.

Yeah badly need some separate categories. It pisses me right off.

I also have a severely affected DS. Diagnosed at age 3. I knew there was a massive issue at 6 weeks old. It affects every aspect of his functioning and he needs constant support with doing practically everything at age 18. Contrast that with people with relationships, high end jobs and a hobby running workplace neurodiversity networks.

See also wearing a sunflower lanyard to denote specialness and getting preferential treatment in queues and airports etc.

My son needs that but wears one so people don't misunderstand all the noises and faces he makes and also they don’t immediately phone the police if he melts down and starts banging his head and shrieking.

I wasn’t the one who compared autistic masking to that of a neurotypical completing a job interview. This was a very “absolute” statement. I am suggesting that it simply cannot be quantified.

I have been known to wear a sunflower lanyard at the airport because the autism despite my mostly functioning able to mask privilege pings the radar of the security staff and results in “random” extra measures. Which involve a variety of up close and personal interactions, which make me stressed and anxious and whoops even more visibility atypical.

I think this thread shows perfectly why the dx needs to be split or better defined.

If those who mask have more severe autism than those who would be described as profound/ severe/ low functioning etc then please advocate for the split. Let this group of people get their own dx/ label whatever and those who are able to mask/ high functioning can happily go around with the autism dx and have it describe your presentation/ needs.

There is a huge group of people who cannot take part in this discussion because their autism is so bad that they aren't able to.

I like the profound autism label as it helps to convey how somebody presents who isn't hf/ aspergers etc (insert whatever term meets the message description that you use).

Mental health needs are a huge issue for people with autism but you rarely hear people say "i have autism and severe mh needs" i think probably because autism is the more socially acceptable dx and from a service point of view if something can be attributed to that dx it is a possible cost saving if a diff dx and support is required (my opinion).

But it isn’t profound autism, it’s autism with a leaning disability.

And no the diagnosis does not need to be split or better defined, it’s also impossible to do so.

💯

What an u no pleasant post. Autistic people are very unlikely to have high end jobs or successful relationships.

We don’t use sunflower lanyards but absolutely don’t begrudge those that do. It’s not about denoting specialness or getting preferential treatment but being able to access queues and airports.

So I was diagnosed in my 30s but I wasn’t masking until then. I was misdiagnosed with severe mental illness and over medicated for conditions I didn’t have and the medication made everything so much worse. I had no job, no life really and no friends. I do sometimes get annoyed at this team of older women suddenly appearing as if they’re the first autistic middle aged woman in the world, who’ve had 1hour video call diagnoses that they’re are buying , while they’ve held down great jobs, raised families successfully, have wonderful social lives but just feel a bit off about life. I wonder how their ‘autism’ is in any way representative of mine and I know my autism is very different and looks very capable compared to someone who is unable to live independently at all.

That said my father is in his 70s very clearly autistic and looking back through my life I see how obvious it was but he climbed to the top of his profession, always managed to have friends (albeit drinking and drug taking friends ) and was hugely successful. Looking at him now unmasked I wonder how the hell he managed it for so long. He struggles to live independently not due to age but because he doesn’t seem to cope with anything

"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."

Some individuals obviously have no idea how exhausting or profound autism can be. End functioning tearing about the problems of carer givers who those with profound care needs.....

I agree. Both my children are ND, 1 autistic and 1 ADHD, my younger with ADHD cannot mask at all. Both had major difficulties with school
and older one mental health has suffered. However they are or will be, able to take part in activities, have a job, relationships, and live independently. It’s been tough but it isn’t the same as needing higher levels of support.

I have 2 ND children and I suspect that I too have ADD and that it explains a lot of things! However there is no real value to me getting a formal diagnosis and I would not take
medication. So just for personal
insight, it doesn’t seem justified.

Exactly.

I smell complete bullshit.

Children and adults are diagnosed in different departments by different teams with different wait lists.

There is no support for being autistic

Functioning normal adults do not an autistic diagnosis get.

And as to telling women that were let down and ignored by a male focused diagnostic process that they can’t have a diagnosis if now over 25 I’d like to see them try. Many of those over 25s were children denied a diagnosis who will have profound challenges in life.

Diagnosis can make a profound difference for over 25s. The NHS fast tracked mine and I’m in my 50s.

You are making my point for me. It’s not a single uniform experience.

I will point out that someone who has chosen to specialise in autism and has had a career of over 20 years in that field who seems to be very personally offended by the idea that people, particularly women who could hide the tism and be successful are instead being diagnosed should perhaps consider why that is. Theory of mind issue perhaps? Internalised ableism? You must have seen it in your profession, educators and family members adamant that there isn’t an issue and the child can try harder.

Exactly what?

Many verbal people with autism need much much more than GPs, many are in supportive living too.

I agree while heartedly with you. My daughter likely is autistic. But my life with her is a world away from what your life with son is. She does have needs that aren't being met (thanks LA). I don't think it helps anyone to have it referred to so generally.

Because there's probably way more to it than the poster is aware of

Doesn't need to be split or defined in your opinion....

Many other people think it does.

https://www.psychologytoday.com/gb/blog/inspectrum/202505/profound-autism-consensus-definition-debuts-at-insar

The linked article argues for it as a subset so a defined dx. I'm sure you're able to google other articles or read the initial lancet article.

It always amazes me that those with a dx of autism who are verbal/ communicative and able to use those skills think that they can speak for everyone who shares that dx even though they have never experienced what those with severe autism experience.