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 don’t think there is a single class in England that has just 1 autistic child any more.

Happy to be corrected by any teacher posters.

I wonder if this is in part due to so many women having babies in their mid 30s and later rather than in their 20s like many did a few decades ago.

We’re better informed now. Previously half the population( women) were shut out of the diagnosis process.

I’m sure I read a report that older male age is also playing a factor. Basically as we all age the quality is going down just older men can still make sperm while menopause is final.

Old eggs old sperm and your chances rise. Add cultural issues. Add family history. Boom.

I think it's a mix of everything:

• Biggest reason = widening of diagnostic criteria, better identification, more understanding / less stigma so more parents seeking assessment.
• Autistic people generally more supported and therefore more able to have / raise children and it's highly hereditary. (I realise "generally" doing some heavy lifting here).
• Older parents.
• More babies who would have died for one reason or another (premature, brain injuries at birth etc) are now surviving.
• I think there's possibly some tiny contribution from environmental contaminants which may have a very small effect at population level (not individual level).
• Another tiny one ... Having children like this myself, I genuinely think if I'd had them in the 50s or 60s they would have died from some kind of accident. They are all over the place, run at cars, hang out windows. Supervision expectations of children have massively increased. Generally childhood accidents are reduced but knowing so many children with this kind of SEN (who have specialist car harnesses etc), I can't imagine they would have all survived childhood in the 1960s, even in one of the institutions they would have been sent to.

Completely get this, apart from the sleeping, I'm good at sleeping. Although dh and 2 of the dc sleep like you do.

I struggle with life admin and multitasking. I have no idea how a lot of meals take to cook so I aim to have dinner ready for 5:30 but it rarely is. I am the queen of procrastination. I always prioritise the dc if they want to chat which means I am usually late for everything else. I struggle with forms and apps. Online banking makes me want to scream.

I have a disability but I don't get pip. Which is fine but I think my dc should all get it (4 out of 5 of them do)

Autism and ADHD range in severity like most other conditions. At the more severe end they definitely are disabilities. In the UK whether something is classed as a disability or not depends on the severity and impact, not the specific condition. Something is classed as a disability if it has a substantial, long term effect on your ability to do daily activities.

Spoken like someone who I’m guessing has no idea what absolute ND burnout and or depression/ MH days when you cannot move is like.

on my bad days I couldn’t get out of bed for a winning lottery ticket being handed to me on gold bars by my biggest crush.

So I totally get where OP is coming from. The paralysis that comes from ADHD is all consuming. And we beat ourselves up enough without being told Social Services should be looking into our livers.

My dc has audhd.

i think adhd and asd can be disabling, moreso the autism. But that is mostly for the lower functioning or severe.
it can be having an impact without it being a disability, it can be an educational need of in medical setting or affect work without it being severe or needing benefits.

Whilst you are saying some issues (obviously dont know when you were diagnosed?) you have managed to have 5(?) kids, maintain a job.

So i agree with pp that having that number of kods os challenging aoready but why continue if the first few had nd/sen it makes the parents jobs tricky too.

I agree they are handing diagnoses out like smarties to some people, they are clearly misdiagnosed (potentially are actually dyslexic or late developers, or adhd but definitely not autistic.
But i disagree with pp who said going private you could just answer in tge right way as you missed out thinking about how school had referred him and presumably filled in the forms showing severe issues... Because for kids it almost doesnt matter if oarents think the kid has it if the school dont mark as severe.because you need 2 settings so need school. Which is obviously a crap situation for inattentive adhd or girls.
But i do think that is happening for asd. These are kids
--who can socialise are happy to spend a lot of time with peers at the park/their house

• Go to multiple clubs, lots of sports on teams

-Can do teamwork The only issue one girl has is they are controlling over their friends.One of the other kids only has some minor sensory issues with food. They are centre of a popular crowd (not nd kids) they maybe shy.

in contrast the aspergers kids i know struggle with clubs/behaviour at clubs, may have struggled a lot in reception and may never have been able to manage before after school sessions or sports. limited friendship, limited interest in friends. Probably not keen on school trips/sleepovers. Sleep issues. Anxiety, depression, sone bullying at secondary. Limited interest, not listening to others only want to talk on their topic.

Ok, are you in the UK? Because in the UK you can get PIP and still be in work.

But also, I want you to know that being a martyr is not winning you any prizes, and it’s probably going to catch up with you eventually and you’ll crash and burn. I’m speaking from experience. I remained hyper-independent and wouldn’t ask for help or admit I couldn’t manage, and ultimately my children suffered and I ended up really really sick and now am more disabled and have had to take semi-retirement as a result.

But you've managed to raise 5 children? Okay...

It is as almost as if ND parents have ND kids...

This is what I don’t get.

Raising kids is far far far harder than working and the crossover of skills is substantial.

I don’t believe that somebody who can adequately care for 5 children can’t work because of ADHD.

If ND parents who absolutely cannot work are ‘entitled’ to have 5 kids destined to also not work as they too are too neurodiverse, then you can see why we are in the mess we are in with the workforce.

They have autism too.

…

Amazing response.

autism presentation different ways for different people. When I was a teenage girl I also was out all the time with friends and on the surface of it looked like I was enjoying myself. What was going on behind the scenes was a very different story. I would go out and i would drink way to much from much to young an age in order to be able to socialise. I lived in a perpetual state of panic that I wasn’t doing being a person correctly, I had an eating disorder from trying so hard to be like other people. Im covered in scars from self harming. I broke my own fingers to have a reason to not go to school for a few days because i found it so exhausting. i didn’t do a full week in school in secondary school ever because I just couldn’t cope with the level of effort that took me.
So don’t fall into the trap of thinking because other autistic people appear to manage things you couldn’t that they don’t struggle with those things, the ways they struggle might just be different to you.

not the OP but her story is fairly similar to my own.
parenting my children doesn’t require me to look people in the eye, or work to a deadline, or commute across a city, or answer the telephone, or consider other people’s feelings on if i’ve accidentally said the wrong thing.
My children know me and I don’t have to change who i am as a person in front of them. We are all autistic (4 out of 5 are working/studying, the 5th is currently in hospital long term) so they understand me and i understand them.

Why would someone who struggles to look after themselves have at least 5 children? That was your biggest mistake.

Why would someone comment on that? What is OP to do... shove them back in?

You lost me at having 3 ND children, then choosing to have MORE kids with a different man.

If life is such a struggle for them then why would you bring innocent children into the world. It’s not a compulsory requirement or something which can’t be prevented? Someone who struggles so so much can’t give a brood of children everything they need. They’re setting up another generation of young autistic children to fail. Whywould you do that intentionally? It’s incredibly selfish to put your want for a child ahead of the quality of life they would actually have. After having three I would hazard a guess that they already had enough to contend with so why have more? Makes no sense to me ?

Of course you can’t shove them back in but you can make damn sure you don’t have anymore. The world doesn’t need more children who grow into adults who can’t look after themselves. It’s not sustainable.

what do you gain by telling her she should not have had 5 kids?
Nothing at all. Her kids are here. You are just punching down.