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.

Maybe you need to look up the definition of disabled. It's not just about facing challenges. I've been discriminated against many times for having a disability. That's far more than just having a challenge in my life

Agreed, the idea that people (in the vast majority of cases - there will of course always be chancers and opportunists) are describing themselves as disabled on the basis of facing a few challenges is, shall we say, somewhat insulting.

Maybe you need to look up the definition of disabled. It's not just about facing challenge
That is exactly my point! Look at the message I responded to! It's another poster who mentioned challenges in relation to disability!

ASD and ADHD are genetic. There is loads of it in my family and extended family. We’ve all got high paying STEM careers which having ND traits has no doubt helped us get. I personally don’t claim benefits for the ASD child who’s disability is the most expensive - despite it costing lots each month - as I can see the ASD / ADHD in my family has also resulted in lots of financial upsides too (the high paying jobs). I think it would be wrong to claim for the expense of the downside while pocketing the cash from the upsides.

Having ND traits isnt the same as having an ASD disgnosis though
And whilst Autism and ADHD maybe genetic that doesnt necessarly mean its been inheritered from a parent
Also having a diagnosis doesnt mean someone is entitled to DLA/ PIP.

Yes people dont seem to understand the difference between genetic and inheritable.

Bully for you, traits do not a diagnosis make and 70-85% of people with autism are under or unemployed. There is no financial upside for the vast majority of people with autism.

I’m sorry I mean diagnosis. 8 out of 10 cousins have ASD and / or ADHD diagnosed.

As I said 70-85% of people with autism are under or unemployed.There is no financial upside for the vast majority of people with autism.

I love this. What a great attitude to have about it! Greta Thunberg calls it her superpower. Her diagnosis means she sees the world in a different way and will have ideas and skills those of us that are NT will never have.

Indeed my son has a rare chromosoe disorder thought to be the underlying cause of his autism and learning disabillities
Its literally a deletion of genes so veey much genetic and whist these condotions can be inherited in my sons case its de novo

Thats great for Greta Thumberg however for many people its extremely disabling.

This. Autism has made my life a lonely misery. And I didn't get any of the 'superpowers' that are meant to come with it.

It has made my children all seriously unwell with many many hospitalisations, much misery and risks to life. They have been the focus of bullying, abuse and misconduct across services. It impacts and blights their life massively day in and out. How is any of that a “ superpower”?

I think that the superpower narrative can work for some but for most it's fake positivity that dismisses the very real struggles that come with living with a disability.

ASD has resulted in an awful lot more bullying. It’s horrid and schools are 100% useless at dealing with it cause they’ve fallen down the ‘be kind to the poor bullies’ rabbit hole cause it’s cheaper and easier than handling the situation. But it’s also resulted in very, very high exam grades. Look at the research department of any very hard STEM subject and they are full of neurodivergent people. same with software development, AI etc. Some neurodivergent people can really thrive in environments based on logical rules.

Just stop it. You’re talking about a minute number, tiny. I work in schools and have children with autism and ASC.Many many children aren’t even in school and many have both autism and adhd. Many are still waiting for diagnosis and kept from treatment and support. The numbers of ND children that are battling mental health struggles often quite serious on top too are huge. All of this let alone the ND itself and the bullying has a massive impact on outcome.

I know what you mean. I don’t claim DLA because I’m not convinced we need it, despite a woman I spoke to from the council’s SENCO team saying we do. My youngest has SEN, undiagnosed autism I suspect. We have to buy expensive foods for him we wouldn’t otherwise buy e.g innocent smoothies, Nakd bars, bear yo-yos. We also have to drive 30 miles to a specialist hairdresser because he cannot tolerate having his hair cut. Ditto specialist dentist 15 miles away because he will not let our family dentist look.

He’s thankfully ok with clothing but we do buy him lots of extra stuff attached to whatever his special interest is at any given point, right now the Gruffalo so he has every thing possible related to that. I don’t think people realise those sort of things when they see an intelligent well adjusted 5 year old. He’s technically non verbal but can read fluently so he’s an odd case.

I hate this rhetoric. I don’t feel like my DS has a superpower when he won’t go in the bath so I have to give him a stand up wash, or when I have to pin him down to cut his nails, or when I’m driving a 60 mile round trip to get his hair cut by a specialist 1:1, or when he can’t tell me how his day at school was beyond “good day”.

It's an odd attitude to have. I mean we don't call any other disability a superpower

The other one that irritates me
Is "its not a disabillity its a different abilty "
Autism can be very disabling
And this kind of stuff minimises it and helps no one.

This is just a question out of interest but how did you find out he could read fluently if he is non-verbal?

There are plenty of autistic people (whether diagnosed or undiagnosed), who are highly successful and well represented in professions like science, medicine, tech, and law. But at the same time there are many who will never be able to work and will always need 24h care, alongside those who can only work part-time, from home, or with a lot of support. Autism is such a broad spectrum, but we just don't really have the words to distinguish between different presentations or severities, and quite often, when people do try to talk about these differences, they get jumped on and accused of being offensive.
This lack of nuance just leads to people talking past each other which causes so much friction. If you are the parent of a child who is severely disabled by autism, it's completely understandable that you’d find it hurtful when people call it a "superpower" or focus only on highly successful autistic people. Especially if you are constantly having to worry about your child’s future and what will happen to them when you are no longer around, particularly with all the cruelty shown towards disabled people who aren't able to work.
But equally, if you are autistic yourself, or the parent of an autistic person, and you see some or all of your traits as a really positive part of who you are, and don't feel that you have a disability, it's also going to be hurtful when some people insist that autism is always a severe, entirely negative thing. The spectrum is too vast. It makes it incredibly difficult to have constructive, empathetic conversations about autism. We need to find terms we can use to actually distinguish between all these very different experiences and specify exactly what we mean when we talk about them. These days if someone mentions Autism, or says that they or their child is autistic, I have absolutely no idea what they mean, or what kind of support they may or may not need. The term has become so broad as to be almost meaningless.

Surely if you're allowed your opinion then another person who is on the spectrum is allowed to see it as a superpower if they want? I'm literally just quoting her as I was reading about her the other day. It's not my opinion it's hers, someone who has autism.

What support would you like? What would be an actual, tangible help to you?

What you're talking about sounds incredibly challenging, but I honestly couldn't begin to articulate what would help. It sounds like you've tried a lot of coping techniques.