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 know but it’s taken for a ride. The criteria are such that they can ONLY be met by people who are very physically disabled (eg a feeding tube and hoists) OR people with ‘neurodiversity’ who can do enjoyable things alone but also somehow need somebody to supervise their every movement otherwise. I’m sorry but it’s so blatantly abused, I see it every day at work. People on PIP for ADHD claiming they’re so absent minded they need somebody to remind them not to leave the hob on, yet anything that benefits them or is enjoyable and suddenly it’s amazing what they can do without supervision

Were you not told if you have ADHD or autism the risks of children also having is extremely high, as you seem shocked your children have it.
Seek help if you need it, medication is available.

Sounds like most men 😂 can hold down important jobs but couldn’t possibly learn how to use a washer, or read the family calendar.

I do agree a lot of people who are time blind wouldn’t miss a flight or their doctors because it’s for them. While there are exceptions to that most people are perfectly capable however of setting alarms on their phones to give them reminders of what and where they need to be.

I do it for the morning routine it’s 5 alarms that point out what we should be doing and if we are somehow not it’s oh shit best do that NOW! It’s taking responsibility for oneself nearly everyone has a phone that is capable of alarms and has a calendar that set reminders for doctors appointments and such. Zero extra cost.

I agree. I know someone who claims pip due to autism but he works full time and cares for his autistic son. Baffling

YANBU OP, it is because people don't understand, and think everyone with is the same.

If you are on UC/PIP then you were assessed and are eligible. I would pay no mind to people who have not seen your medical records let alone your struggles behind closed doors. It is nothing to do with them. Some people make a hobby of punching down.

Regarding “people who aren’t severely affected” - you only get a formal diagnosis for autism or ADHD if your symptoms/traits are causing significant impairment in several aspects of your life and have done since early childhood.

Also, bear in mind that it might look to the observer that somebody is doing well in life when actually they aren’t. Intelligent women in particular are fantastic at masking. Most people - including my family - were extremely surprised when I was diagnosed with autism and ADHD. It looked like I was managing but I wasn’t. I lived with domestic abuse for 20 years (this is common for ND women). I didn’t realize and nor did anyone else. I eventually imploded and am now too ill to work.

So I have been bullied and manipulated all my life. I have a degree, yet I don’t understand inferences, body language and facial expressions. My language processing is terrible so I struggle to understand what a lot of people are saying and struggle to take in spoken information, I find talking to a group of people exhausting. I take things literally so often misunderstand things. I struggle with planning and organizing free text (essays, reports etc) and can easily get distracted. I have complex systems to remind me of appointments and still manage to forget them.

i have had to work far harder than anyone else to succeed and in the end, my body could no longer cope with the stress of this extra workload. I’m late 50s and had to retire over a year ago due to ill health.

I’ll tell you why, it’s because anybody can get a diagnosis.
Hear me out, DS has autism and was recently referred by school for an ADHD assessment. To avoid NHS delays we decided to go private: for 700£ you get a 1h30 video appointment, and if you read beforehand about the symptoms it is very easy to give all the right answers. Even the practitioner asks in a way that makes it easy: and you have difficulties focussing? Is falling asleep a struggle? Etc They didn’t ask us for concrete examples.
We were truthful because we are interested in the diagnosis and don’t plan to claim any benefit or extra exam time etc. But I was shocked at how easy it would be to fraudulently get diagnosed!

“i have had to work far harder than anyone else to succeed”

That’s quite an assertion. Surely you don’t believe that you have had to work far harder than anyone else in the whole world?

I have ADHD, quite severely. It affects my day to day life and much more so since the menopause. I don't consider myself disabled.

Why? Because although managing the symptoms of ADHD are hard, I don't consider that makes it a disability.

Very few people have an easy life. We all struggle with one thing or another, and with it all, we all have to make many efforts to cope.

I consider ADHD a disability when the effects of the disorder is such that there really is little chance the person can do anything about it. Having to make efforts, mask, deal with it, try to improve etc....well, that's just normal life.

What on earth did people do in the war :S
this quite a statement of waste

That’s such a great attitude

I can ‘see’ everything that needs to be done. I just can’t do it. My brain doesn’t work like that
You can do it. The reason why you don't is because you listen to what your brain is telling you. You need to learn to discipline yourself to make it happen.

I say that from an ADHD fellow who knows exactly what you mean. Procrastination is my second name. Constant insistent battle to get in with things. I'm here right now when I should be at my desk getting on with my to do list.
I will force myself to do it by the end of tonight. It will be very hard. I won't feel like doing it at all, I'll feel terribly sorry about myself, but I'll do it....and feel good for it for a day...until the next time.

It's not a disability.

Also, although I'm the queen of procrastination, ADHD does give me one advantage, I'm super efficient. I'm fast and can multitask. So that means I usually accomplish tasks twice as fast as my DH, who is the exact opposite and a model of getting on with things as and when they need doing.

We balance out almost perfectly. He could say that that the fact everything takes twice as long as me, because his brain is not as sharp and he is a perfectionist, that makes it him disabled.

Where does it end then!

I am sorry you are struggling - have you looked into how duloxtine affects noradrenaline in your brain? I am not a medical professional so please see a second opinion or do research but my understanding is that noradrenaline can make you anxious if you have too much and duloxtine can mean you have trouble getting rid of noradrenaline which is why is not an ideal drug for pots patients (although some use it). This would affect your sleep.
Also, too much histamine affects your sleep - a low histamine diet could help.
Are you by any chance bendy in some joints etc? I have been doing a lot of research for a family member and strong link between the hyperbole genes and ND / depression etc.

Fair point. Poor phrasing. I meant that I have had to work harder to achieve the same things as other similar people (my psychiatrist said this - I haven’t just made it up).

You say that as though everyone experiences things exactly the same though.
As I said above, my son with autism is non verbal, doubly incontinent, cannot dress himself and will never live an independent life. That is a disability, and someone with autism saying ‘I have autism and I cope fine’ won’t change that.

Are you sure you can't take any of the meds? They're pretty diverse. Often it's the blood pressure element that rules out stimulants but some of the non-stimulant meds actually lower blood pressure etc.

What you describe sounds like textbook dopamine deficiency. Before going back on the meds I'd sit there on a Saturday morning putting off the housework. Now I can work a 50+ hour week in an active job, hit the gym Mon/Wed/Fri, and still get shit done.

The little voice in my head is still trying to make excuses but if I just attempt to get on with it I find I can actually do it.

And thats why the umbrella term has become meaningless.

I have colleagues wth children who have the same disabilities as yours, who will never live independently or function for themselves and they're highly offended by someone who works full time, brings up kids, runs a business, is an actress or musician successfully, calling themselves disabled because they have ASD.

Its nowhere near the same at all.

You say that as though everyone experiences things exactly the same though
No, it's exactly the opposite of what I'm trying to say. The very large majority of people have to overcome some difficulties that their friends, neighbours, co-workers don't experience. There are MANY reasons why doing something might be difficult.

Difficult does not mean disability. There are of course different levels of difficulties and some people do have to give significant efforts to reach things that others gave managed with lesser efforts, but it's likely that other people have overcome even harder circumstances than us to get there too.

We need to focus on our own goals and pushing our limits, rather than feel sorry for ourselves because we perceive that we have it harder than others to reach our goals.

Disability isn’t the same. It varies massively and something that significantly impacts life is a disability.

Whilst I have every sympathy with the issues you very obviously have to deal with on a daily basis, in my opinion it is very irresponsible to have 5 children. Particularly the latter two knowing they stand a very high chance of being ND also. 5 children is challenging if they and the mum have no additional needs.

Yes so someone running their own business and home, or successful actors etc are not significantly impacted.

My husband is probably autistic and says data entry is very soothing.

70-80% of autistic people
are under employed or unemployed. Successful autistic people running businesses are hugely rare.

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.

So many adults getting tested in their 40/50’s who has worked and raised families till that point who then collapse once they get a diagnosis.

So many adults who have built in coping skills because they just had to learn how to are very likely to be on the spectrum somewhere but they learnt how to cope and just get on with it. Retired people even getting tested worked their whole lives but suddenly need to get tested.

I run my life on lists and alarms and double triple checking things. For example locking the door I even go back and check my cameras to make sure. I was actually part way though adhd testing as a child around 11/12 when I decided because children know everything that I didn’t want to sit there and talk to these people so refused to engage and was taken off the assessment path. Never tried to go back to it though because what difference would it really make. None.