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.

So disabled people shouldn’t have children now- on a parenting forum!!! MN hits a new low.

Anybody with an autism diagnosis has a life severely impacted by it as it needs to be severely impacted to get a diagnosis. Autism is a protected disability, you don’t get to pick and choose on behalf of people.

My wife is physically disabled following cancer. She has a metal bone replacement from hip to shin which hurts and makes her unable to walk very far, or stand. She walks with a faint limp and is an infection risk. She requires an operation to replace some of the connections and has been told she has to wait until her leg gives way due to the very real chance of contracting MRSA in hospital. She was told to shield during Covid.

My wife was on max rate mobility DLA as a child. Her condition has not improved, but she is able to tolerate pain better so she will walk further than she did as a child. Eg she can take the children to a theme park as long as she has multiple sits, and with the expectation that the next few days will be agony whilst the leg settles.

She doesn’t qualify for PIP.

Very ironically, she would if she claimed for her ADHD as it causes her life struggles and she has to be self employed as she lacks the skills for regular, consistent work. She has paid thousands in fines for late tax filing - she just can’t do it. She is now on a special scheme with the tax office to help her. I organise her life and everything to do with the kids and the house - she can’t keep it in her head and suffers with fatigue (either due to the cancer or ADHD - doesn’t matter which) and will become so stressed it limits her function. She is extremely talented and an expert in her field, it’s just the ADHD that limits her. She works part time and is trying to see if she can retire in a few years (at 55) as she is struggling more and more as she gets older.

A friend claims for FMG. She runs the local scout group and takes them on hikes and camps. She presumably has bad days, however is able to commit to the weekly session which is active. She also works as a carer for children. She is high rate mobility with the car to prove it.

The problem is the way the system is set out. My friend will have honestly filled out the form. My wife did too (but only completed the mobility section in terms of her leg).

Yep. It makes absolutely zero sense. I haven’t applied but I’m part of a Facebook group for my disability which is life threatening, 24/7 (no flare ups/downs) and requires intensive therapy every day. However because with literally hours of treatment a day we can do normal things, albeit with exhaustion and pain, the PIP success rate is very very low.

It’s absolute madness and I’m sure not what they intended when the scheme started. It needs an urgent review, with a ring fenced list of conditions and a common sense approach taken to any other applications which really looks in detail at their life - somebody who can go on holiday with friends, or dates with no problems, or can spend a few days at a music festival, clearly isn’t so impacted by their ‘neurodiversity’ that they urgently need benefits.

Sorry but this isn’t true. At work I see many autistic people on PIP perfectly well able to do things that I know, if it was represented on the application form, they would NEVER get points. They’ve clearly lied/exaggerated.

I think in the future there will be many more names for what falls under autism/adhd currently. I have traits, and a dyslexia diagnosis and there is a diagnosis of autism in my family. But I wouldn't say my traits have been life limiting at all, unless you include avoiding night clubs, hyper focusing, constantly tapping or twitching, finding organisation a challenge and not being able to touch a peach as problematic. I'm certainly not going to pursue a diagnosis, life has not been a struggle for me generally, but maybe others would?

She wouldn’t get it for adhd. There are 4 of us in our house that have adhd and autism. Only one qualifies for PIP. Her severe adhd that has caused hospitalisation is not what gets her her PIP. None of us have oils get PIP for our adhd alone and it’s had a catastrophic impact.

There really won’t. Your traits aren’t life limiting as you say and you’re not autistic.

I see a LOT of people on PIP for ADHD. The success rate for this is much higher than many other conditions.

There is a difference between 'significant' and 'severe' impairment. I know it's a bit semantic but I do wish people would stop using the word 'severe' for this kind of thing. The language creep means my non verbal, pad wearing, severely impacted child is further marginalised. The language creep around this is what's severe.

You can lie all you want but you still need evidence and by evidence i mean proper evidencd not patoent says letter from the GP.

Or successful people with autism don’t know they even have autism and haven’t been or just don’t want to be tested because they don’t feel the need to be
Exactly that! I had no idea I had ADHD. Even after working with young children diagnosed in the USA in the 90s...the start of the ritalin outbreak, I didn't think it applied to me.

All those years, I just saw it as...being me....as did my parents. Always talking in class, speaking extremely fast and loud, interrupting, always getting things at school before anyone else, and then getting poor grades because of making errors along the way...struggling in social gatherings, over stimulated by stimulus, easily triggered when angry etc...

This was just...me and now that I know I'm a typical ADHD case, as was my dad, I still see it as just being who I am.

I don't need testing, it's jumps as obvious even to people who only just meet me, let alone people who've known me long. I also don't want any adjustments made, let alone sympathy. I've learned and continue to learn to adjust and live with it.

A fellow hyperactive friend told me the other day that she uses the metronome in her head to calm her brain down. What a brilliant tip! I've started using it and it's really helpful

I wouldn't change me. ADHD has made things hard at times but it has also allow me to accomplish things I wouldn't have without it. How many times did I hear people saying to me 'i don't know how you do it!', and I thought 'well I just get on with it'.

It’s not eugenics / Nazi to suggest that someone who struggles as much as OP with normal life would have been better off not having at least 5 children.

There is a difference between 'significant' and 'severe' impairment. I know it's a bit semantic but I do wish people would stop using the word 'severe' for this kind of thing
Agree 💯. It's an aspect of this generation to dramatise everything with language. Whilst some words are now forbidden and can only be used with **, others have become normalised such as 'severe', 'significant', 'traumatic', 'extensive' etc...making the threshold very narrow.

People constantly say that you don’t PIP for ADHD yet many of us know people who do get it for that or maybe it’s their anxiety on top? Whatever it is seemingly people see other people who live as well as any of us, can go on holiday, have children etc yet they get higher rate and all that goes with that yet others who are physically disabled don’t, it’s madness. If you’re anxious and sometimes struggle to leave the house you shouldn’t be given a car!

It makes me wonder what my children should be called, 'extreme'?

One of my DC isn't actually as severely impacted as the other, but many Mumsnet posters would not recognise his kind of autism - limited language, very unusual mannerisms, very frequent self injurious behaviour etc etc etc. I understand some people have started calling for a separate 'profound' category, but he wouldn't even fit in that, even though he's closer to profound than the people who can get married and have kids, so what does that make him? A freak? Not really autistic?

Its mind blowing that you've had i presume a minimum of 5 children knowing how your autism affects you.

People only see the slightly unusual, slight weird autistic variety. They don't see the more severe who tend to be forgotten.

You’re not going to be given a car if you’re anxious and sometimes struggle to leave the house.

Loving the way you think we should believe you know the private details of very lengthy and detailed 14 page forms belonging to other people.

How?

The sections don’t match up to ADHD traits and you are not privy to the private intimate details of 14 page assessments.

My previous post was in answer to this.

People only see the slightly unusual, slight weird autistic variety. They don't see the more severe who tend to be forgotten
Absolutely! I worked with autistic children in the 90s when 'autism' was a newer diagnosis. These were children severely impacted by it. No way they could have gone to a standard school. These were children who needed 1:1 care 24h a day.

Yet the parents of these children seem much less vocal and expecting sympathy than parents of autistic kids who manage school, activities, friendships, but just find it a bit harder than average Jo.

That would be discrimination. Why should someone with a non terminal illness be granted pip on the basis of diagnosis but others have to prove needs because their diagnosis isn't ring fenced?

This. Disability or not, people should only have children if they are fully capable of looking after them.

I know that things can happen after actually having children, but the OP seems to have just batted on having children, despite the impact on those children. 🤷‍♀️

Me, too! X