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.

That’s simply not true - many, many autistic people are highly educated, have professional jobs and successful relationships.

I know someone diagnosed with ADHD but their parents previously had substance abuse issues and what about children who are attached to screens being diagnosed with these conditions? I don’t think it’s right.

The children are attached to screens as they are probably ND.

No they aren’t. Only 1 in 3 are employed.

Also, they looked at Spain and Denmark. They have higher levels of adhd as a ratio to their populations than the U.K.

That was part of the conclusion.

I am autistic and most people I know with autism too do not work. My boyfriend does and he is highly educated but his job is linked to his special interest. He also has a very understanding employer.
A lot do want to work but they have been fired from voluntary roles or have had a lifetime of masking that has caused severe mental health issues.

What is true is that autistic adults are less likely to be employed or to be in a successful relationship. Quite a lot less likely. There are stats.

It is true. Only 30% are employed and the rest are often hugely unemployed.

You need to read the government Buckland review.

www.autism.org.uk/what-we-do/news/the-buckland-review-of-autism-employment-is-publis

They probably had adhd too. Self medication’s common with adhd and it is often hereditary.

Adults and children are diagnosed separately by different teams and are in different wait lists. It is crucial that adults with ADHD get timely diagnosis, support and treatment. The NHS Taskforce has just done its own research into ADHD and made recommendations on what should happen.

”The independent ADHD Taskforce was commissioned by NHS England in 2024. This was due to serious concerns about access to timely support, the impacts, risks (e.g. suicide, crime) and avoidable costs of unsupported ADHD (e.g. welfare, benefits, long-term unemployment) (14). It was tasked with [1] considering how services and support across health, education, justice and the whole of society need to be transformed to ensure those with ADHD are able to access timely, appropriate, effective and high-quality support beyond health alone, and live to their full potential, as well as [2] making recommendations on a whole system approach to managing ADHD. Societal changes in attitude and the provision of appropriate support can enable people with ADHD to engage successfully in education and work and participate fully in society.”

www.england.nhs.uk/long-read/report-of-the-independent-adhd-taskforce-part-1/

Define functional!

The Stats show only 30% of autistic people are employed and the rest are often underemployed which makes having a high end job unlikely.

Given the diagnosis criteria and the discrimination shown towards autistic people it stands to reason that forming relationships is often very hard.

That would have condemned me to suicide.

There wasn’t ANY diagnosis for girls like me when I was at school.

why shouldn’t I be allowed to correct that?

Exactly. Why is a child's need for a diagnosis more important? Many of us were misdiagnosed with depression, etc

A 30 plus limit would be shit for many women. It is well documented that many women who have ‘survived’ hit the hormonal fun of perimenopause and their Autism/ADHD becomes a problem.

Many people now are also only realising after their own children have been diagnosed what what have been blindingly obvious if we had known what we know now when we had been younger!

Many are supporting children with ADHD and autism too. Diagnosis was deemed important for me to do that work. Denying adults let down as children goes against the NHS task force recommendations which recognises how important diagnosis and treatment is for adults.

That report has analysed only those with an autism diagnosis. The argument about the number of people on the entire spectrum in work is meaningless when you realise that those successfully in work are the least likely to have sought a diagnosis.

The report is valuable and does disclose a problem but yet again emphasises how meaningless and useless the classification of such a varied range of people as all having the same basic problem is.

I predict that in another 20 years, since screening of children in school became routine, that the percentage of people on the spectrum in employment will have risen markedly.

Not because of any measures to increase the employment of people with ASD, but because of the massive increase in an ASD diagnosis in children who were always going to be one of those who went on and got a job and lived a life that looked not much different from anyone else's.

You really are talking nonsense.

Children aren’t screened routinely in school- far from it.

We’re talking about autism diagnosis and people with a diagnosis all of whom reach a threshold of 3 significant areas that come with often similar issues. These issues make life very different and hugely more difficult to that enjoyed by the vast majority particularly in the world of work. My children on the surface look like those dismissed as not worthy of diagnosis. It’s looking unlikely that any will be able to get work or keep it. I see so many so many in similar situations. That isn’t going to change any time soon and it’s tragic.

1% of people are diagnosed autistic with 2-3% seemed as a more accurate figure due to diagnosis. These aren’t huge figures and any increase is due to thankfully better understanding of how it presents in women and girls and women who have been tragically let down coming forward.

@Libs09D

i think probably a limit of say age 30 on adult diagnosis to focus on child ones would make sense. As pp says life is generally harder for kids at home and school, they have no autonomy. They are forced to sit exams affecting their lives.
stuck in a room of 30+ people. With kids kicking their chairs or drawing on their desks. Opening their bags. Bored out of their heads. Doing subjects they have no interest in.

I got a diagnosis at 62. It probably stopped me killing myself. It certainly stopped me damaging property when I hit things through frustration (to avoid hitting the people who caused the frustration) . Hilton services northbound had a toe shaped hole at the bottom of one of its pillars for many years. I thought the pillar was solid and I might break a toe, but it was panelled and went straight through 🤪

Having autonomy comes with having to make decisions and do admin that many people with ADHD find hard to impossible. Adults are also forced all the time to do things they don't like. Lockdown and mask wearing were spectacularly difficult for me, and what triggered my understanding of my condition and need for a diagnosis.

Nobody should be denied a diagnosis whatever their stage of life. I had to pay to get mine and before you query it the psychiatrist was the NHS adult ADHD specialist for the area.

An age cutoff would be barbaric.

I'm not talking nonsense. They aren't screened in a formal sense but every teacher now knows about it and is looking out for it to explain the behaviours of children they aren't progressing with.

Every school has a SEN trained person, no?

Every school has a SENCO yes. They spend most of the directed time for SENCO work fighting the system to get help for the children who need it the most.

@Imdunfer you obviously are not obliged to answer but I am interested and if I am very honest a bit confused as to why the diagnosis stopped you hitting things. I realise diagnosis come with increased understanding but you must have strongly suspected this to be the case to have pursued the diagnosis in the first place.

Actually every school has a senco but they only have to complete the training within 3 years of starting a role. Its not unheard of to have a string of unqualified sencos who do the role to get leadership experience ready for deputy headship. Obviously some are qualified and do the role for many years excellenty. The post is very often part time, in some small schools as little as an afternoon a week and they absolutely arent trained to screen for autism. They might get very used to filling out screening forms for cahms start to notice patterns if they do it a while.

They are still not great at understanding masking so girls can get through primary in particular with noone seeeing anything.

🤣🤣🤣🤣

Pee Sceening takes a fair amount of work, needs to be done properly and SENCOs are struggling to screen and fight for the children they see as having need and may need diagnosis. No way on earth could they screen all children and no teachers can’t do it. They don’t have the expertise.

And sadly many teachers in schools are hugely ignorant re autism and adhd anyway particularly amongst girls and those who can mask traits until they step foot out of school.

Personally I would like re-categorisation so that DS1’s needs and abilities are more easily understood as he goes through life, especially when DH and I are no longer here. There’s often so much suspicion and hatred of those people who can’t work and assumptions about people who claim benefits fraudulently, fiddle their PIP claims and are lazy twonks who pretend they can’t work. My son is currently 20 and we don’t yet know if he’ll eventually manage some form of very part time work. If he does then he’ll require an extremely understanding and flexible employer with astonishingly flexible hours and tasks. He won’t ever have a career as such or live independently. I fear that we are constantly one step away from a PIP assessor who decides he no longer qualifies for maximum PIP, or a job centre assessor who feels he can work (as an example) full time on the tills at the supermarket, or a social worker who removes his budget for daytime care. What will he do when I’m no longer here to advocate for him? He doesn’t understand that he needs advocacy so he wouldn’t know that he needs to look for it, let alone where to find it.

For me, the issue with a diagnosis of ‘autism’ is that it doesn’t adequately explain anyone’s challenges or capabilities. I’m not suggesting I have a solution but I do feel that the parameters as they are currently are far too broad. On this thread there are many posters with experiences ranging from going through mainstream school, having a successful career and being married with children; to going through special school and being unable to access university or a career or live independently (my son); to being profoundly disabled and requiring constant specialist care. I feel that recategorisation is essential, not for the autistic people themselves (some of whom know their own challenges and strengths) but for better understanding in life.

Chuckling darkly to myself at the idea that every school has an SEN trained person. Our experience was me being accused of lying and paranoia and being asked “what is it you want with all of these labels?”. DS already had an EHCP and full-time 1:1 support so it wasn’t like his SEN was subtle.