AIBU to ask why ADHD and autism are dismissed as disabilities?

[SummerAtaris]

There’s been a tonne of threads about benefits recently and there seems to be a recurring theme that ‘only the most severe disabilities should get any help’ and they almost always mention that people suffering with MH health issues, or ‘non issues’ like ADHD should be cut off from help. I’d like to know what those people in particular think adhd is, and why they don’t consider it to be a disability.

I am 44 years old, I have level 1 autism and ‘combined type’ adhd. I have worked since I left school at 16. I raised my eldest 3 children from my first marriage by myself, all 3 are diagnosed with varying degrees of neurodivergences (didn’t know that at the time)

I am now married to a wonderful man, and we have children together, they are also ND.

It is a challenge every single day to just make myself wash & brush my teeth. And I need to try and herd 2
other people with the same issues to do the same.

I am massively in debt, because the filter that everyone else seems to have that tell you, no don’t do it, just isn’t there.

I literally cannot sleep. I try. But my brain is almost always stuck in a loop of catastrophising, and is running a chorus of a song that I hate over and over and over and there’s nothing I can do about it. When I do sleep I’m still catastrophising and have incredibly vivid nightmares and wake up sad, anxious and depressed and I can’t shake off my dreams easily.

I go from 7 or so days of zero sleep, then pass out and am comatose for 48-72 hours approx.

I forget to eat, I forget to drink water. I don’t know that I need the bathroom until my bladder is literally about to burst.

I suffer from boredom so extreme that I’ve attempted suicide multiple times.

‘Masking’ takes everything that I have. By the time I get home after any social event (by event I mean anything that needs me to present as a ‘normal’ person, school drops offs, appointments etc) leave me gasping for breath, physically stimming to the point my muscles are crying out and I still can’t stop, endlessly ruminating over conversations I had to participate in against my will.

This is not a comprehensive list. I’ll remember this post for the rest of my life and there will always be things I should have added to it.

My body is perfectly fine. I’m not disabled in that way. But my brain, my bodies operating system, IS disabled. I’m so tired of hearing that adhd and lower levels of autism are not disabling. They absolutely fucking are. I manage the school run these days and that’s pretty much it. I haven’t been able to work for around 8 years now.

Go ahead. Tell me how you’d employ me.

I am childless for much the same reason - can barely look after myself. As I've said before, the thought of having kids just makes me want to have a nap.

But this bit:

"I've been unable to cook a meal in this hmo for the past decade due to anxiety and abusive twat of a housemate"

just makes me despair. An entire decade? It's exactly this kind of nonsense that makes it extremely hard for others to sympathise.

My best friend/housemate has free flowing anxiety and I try to support her at all times, but there has to be a limit or she becomes unbearably entitled and I become her unpaid slave/support animal.

I think if there is a legitimate reason you are allowed to positively discriminate otherwise wouldn't disability benefits technically be discrimination (because they are discriminating against non-disabled people). Applying blanket rules which prohibit people with certain disabilities applying probably would be discrimination that wasn't allowed though.

As a side note, I thought people with a terminal illness were automatically eligible for certain benefits and got them expedited? I'm sure it says this on children's DLA forms.

That's just not true. It's not how the definition of disability works in the UK. Under the Equality Act, someone is only classed as having a protected disability if their condition has a substantial and long term negative effect on their day to day life. Autism is not an automatic disability just because someone has the diagnosis. The law looks at how the condition actually impacts that specific person in real life which varies a lot from person to person. Autistic people will generally have some degree of differences in social communication and sensory processing, but they do not always cause a substantial disadvantage.
So having an autism diagnosis does not automatically mean someone hits the legal threshold for disability. There are only a few conditions which work differently where the law grants automatic protection from the moment of diagnosis, such as MS, cancer, and HIV. For everything else, including autism, the impact on daily life must be looked at on an individual basis. Autism has a very wide variance in severity and impact just like most other conditions do.

@StartingFreshFor2026 yes ive been thinking that re accidents that adhd children would have had previously so fewer would have survived to reproduce.
My dc were hectic like that.

i do think it is why its important for older - under 40 women and under 55 men to be referred for asd and adhd assessments to at least understand if they have these to make decisions on number of kids.

For eg if dp sister had been diagnosed adhd we may have reconsidered dc2 when dc1 was sooo difficult a baby and toddler. However adhd people are obviously more likely to make decisions the rest of us may consider unwise. (As other relative has adhd with dc1 awaiting diagnosis of asd and adhd and has still chosen to have dc2. And possibly the benefits , bigger house etc. But their dc1 isnt actually that tricky (compared to either of mine..)
i wouldnt have dc3 if i were paid 1mil. Mainly because of crap nhs birth/care for kids but also issues at school. I would say i have ptsd from dealing with nhs for the kids.

i think its a lot more common now for people to not really know what other peoples kids are like. Or what normal is.

Having lots of (nd) kids is harder than working which is why lots are choosing to have fewer or no kids.

@Sweepyed yes, this link shows just how much childhood deaths by accidents have fallen since 1980, I would bet it went down massively from 1960 to 1980 too:
https://www.gosh.nhs.uk/press-releases/overall-child-deaths-due-injuries-are-down-uk/

My children are cognitively disabled in addition to their autism and extremely impulsive ADHD. In 1960 it would have only taken one bad judgment from a parent or institutional carer to be exhausted and think "I'll let one of the older, more able kids watch them for a moment while I make a cup of tea", and they'd have been out a window, onto a road. At least where I live now, there's a lot of judgment if parents aren't constantly supervising neurotypical kids let alone severely disabled ones. I know parents who follow their (relatively lower risk, but severely disabled) children around their safe houses constantly. I can't imagine institutions back in the 60s had 1:1 or 2:1 staffing like some of these children get in their special schools today.

Another thing I've noticed is that my kids appear to have no basic survival instincts either?? I don't know if that is a thing. Like, one went off the ridge into the deep end of a pool once and lucky I was right there because he didn't even try to swim. It spooked me a bit because I'd have thought all animals had some kind of instinct. He clamped his arms to his sides immediately just went under without moving!

@StartingFreshFor2026 That must have been terrifying! 💐

Thank you, it was, but I've often thought of it, and other incidents like it and realised just how vulnerable these types of children are. We are seeing more and more of them, particularly in special schools where this profile and also PMLD is rising. I often wonder if a lot of these children are simply surviving childhood in a way they probably wouldn't have done a generation ago.

Anyone terminal, with less than a certain time to live (as consultant diagnosed) is entitled to fast track PIP/DLA/other benefits (depending on age).

Rightly

. https://www.gov.uk/government/news/fast-tracked-access-to-benefits-for-people-with-terminal-illness-expanded

Yes I know I read somewhere that life expectancy for people with Down syndrome has risen a lot so it would make sense that the same was true for other disabilities. Also I always had the impression that many people with PMLD had conditions caused by very premature birth and things like hypoxic brain injuries at birth which babies are more likely to survive now due to advances in neonatal care?

ADHD / ASD can be under diagnosed but over-PIP’d. If your ASD leaves you non-verbal, incontinent, need permanent carers etc then yes, PIP’s needed. If like my child you go through clothes a lot quicker because sensory issues (keeps changing their mind about what is and isn’t acceptable) and diet is extremely limited, suck it up. Life can be hard. You don’t need to be compensated to the last penny for any form of hardship. I’d far, far prefer more of my taxes went to help the former in my example and not the latter. Benefits money is limited. We need to prioritise.

And the massive in between who still need support?

It is true.Under both UK law (e.g., the Equality Act) and global medical guidelines, autism is recognized as a disability. To get a diagnosis it needs to have a substantial and long term negative effect on day to day life.

Incorrect. Going through clothes and having sensory issues is not going to get you PIP. My autistic child is verbal and continent. She gets and is very much entitled to full PIP.

I taught in the 90s. Children with SEND were being moved out of a rigid segregated special school system into a more integrated system. We have also become better informed re autism. Women and girls were shut out before, now they’re not.

Autistic kids don’t manage school or just find it a bit harder than the average Jo. That is the whole point. Your ignorance is palpable.

I don’t think PIP should be for wide ranging things. What absolutely STAGGERS me is the people that appear in documentaries about PIP who have depression or ADHD, and who are eloquent, intelligent, make great points to the camera and yet are too ill to work. These people who’ve been clearly told that their claims are justified when they don’t seem to be whatsoever. We’re institutionalising these people by not making them work. We’re making them benefit dependent. We’re certainly not helping them.

Wow so if you’re intelligent or eloquent you don’t get PIP. WTAF ,how clueless can you be?

Disability cuts across all levels of intelligence.

If you’re intelligent and eloquent you can get a job. You might be ‘disabled’ but not disabled enough for the government to need to fund you. You’re not severely mentally disabled. You’ve not got a few months to live with MND or cancer? You can get a job or resort to friends / family / charity.

My opinion. But I’d put good money on that that’s where we’ll be with PIP in 5 years time because through my work I know enough about the state of the nations finances to know just how unaffordable the UK’s current situation is.

😂😂😂😂 no all intelligent eloquent people can’t get a job. You’re just sounding silly now.

You do realise there are many,many severely mentally disabled people in hospitals or under services and with very high support needs who are highly intelligent and eloquent.

You are seeing one tiny snapshot of their lives.

I think you have a very naive idea about what’s affordable and what isn’t. Some people actually think we can afford to spend to meet an endlessness booming disability and pensions bill. We can’t, which is why Keir Starmer ended up resigning. He couldn’t fund defence without cutting welfare and backbenchers wouldn’t let him cut welfare. And it’s why Andy Burnham will end up resigning too.

That wasn’t why Keir Starmer resigned. I doubt very much that AB will resign and your ludicrous posts were about who should get PIP. Saying anybody intelligent or eloquent shouldn’t get PIP is beyond ridiculous.

If we can afford to remove the 2 child cap we can afford disability benefits

There is a perception that ADHD = disability when in fact some people can function very well with it whereas others are significantly impacted. For some people the condition is disabling, others don’t feel disabled by it and dislike being labelled as such. This is true of a lot of medical conditions but for some reason neurodivergence seems to get treated in this all or nothing way which is unhelpful and probably where a lot of the stigma comes from.

You seem to be confusing the clinical threshold for a diagnosis with the legal threshold for a disability. Just because someone has an autism diagnosis does not mean they are automatically considered disabled under the Equality Act.
The law does not grant automatic disability status to an autism diagnosis, or to the vast majority of other conditions. It applies a functional test, someone has to show that in their specific case their impairment has a substantial and long term adverse effect on their ability to carry out normal day to day activities.
Because autism is a spectrum, it affects people in vastly different ways and with varying levels of severity. Many autistic people do not experience a substantial negative impact on their daily lives that meets the legal threshold, though many autistic people do.
Similarly, someone with cerebral palsy who is mildly affected likely would not meet the criteria of being disabled under the Equality Act, whereas someone with more severe cerebral palsy would. Someone with mild cerebral palsy still meets the criteria for having cerebral palsy, just not for having a disability. The same applies to conditions like migraines, or arthritis, or depression, or a hearing impairment. That is exactly why the law requires a case by case assessment rather than treating every diagnosis as an automatic disability.

“Many autistic people do not experience a substantial negative impact on their daily lives that meets the legal threshold, though many autistic people do.” That is incorrect.

Under formal diagnostic frameworks like the DSM-5 and ICD-11, symptoms must cause
"clinically significant impairment" in important areas of life (such as social, occupational, or educational functioning) to receive an autism diagnosis.