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.

Are ADHD Meds an option? They can make a huge difference especially for women in perimenopause ❤️

I don't think that you should take it personally. The benefits bill is clearly out of control and lots of people are taking the piss, but that doesn't mean that you are.

Unfortunately no for a few reasons. I take Duloxetine now which I’m actually prescribed for PMDD but is somewhat effective for adhd.

It sounds incredibly tough for both you and your DH.

Especially the bit where you're passed out for up to 72 hours.

I hope both you and especially your husband have help for what is quite obviously a disability.

I'm not sure I could cope with a family in yours or your husband's circumstances

I have level 1 ASD and physical disabilities. The thought of living on disability payments terrifies me. It is much easier to manage my conditions with the financial resources I earn by working.

Yes, masking is exhausting. Yes, learning coping skills was hard. Yes, sometimes all I can manage in my life beyond work and basic child care is sleep.

It’s still worth it. I will fight to the bitter end before I go on disability.

We do our children a disservice when we don’t help match them to careers where they can at manage.

OP, do you mean you literally pass out and comatose for over 48 hours? If so, it is something you should speak to you GP about.

I have autism. I don't know what level. I spent my school years sat alone in the library, a complete loner who couldn't maintain eye contact with anyone. This has continued into adulthood. I have no friends. I feel sheer panic at any social situations. I haven't seen any of my relatives apart from parents since I was about 10 years old (and they lived around the corner).

I used to look around at my peers and wonder, why am I so different? Why don't I know what to say to anyone, why am I always by myself, why haven't I succeeded like others have? Well I know now, Autism. So yes, it is definitely a disability.

I do wonder whether people getting the diagnosis truly have social struggles though. From my tiny case study, my neighbours teenage daughter has just been diagnosed with autism, yet I see her coming and going loudly with friends all the time. I think, but I'm autistic and I've never had that?

Sorry, rambling.

You said you worked since you left school at 16, so you are clearly employable.

@Rosesandcamelias

I had no friends and had trouble even speaking sometimes as a child. I got friends at university when I found other ASD people.

my daughter has tons of friends. They are all ND. Primary school was hard because there was not a big pool of children. So we signed her up for activities that would attract other ASD children. For secondary school, she attends a large enough school that there are plenty of teens with ASD and ADHD. They gravitate to one another. Having other people who speak like her and communicate like her as a social circle makes all the difference.

It has given her the ability to practice and develop the skills she needs to integrate into mainstream society. She still gets tired from those interactions, but she manages so much better than me or her father.

Her generation is going to do so much better because they have such better support.

I send you sympathy. I have just been diagnosed "significantly" autistic in my mid-fifties, so now learning what this means and why I have always found life so hard. I suspect I have ADHD as well by the criteria.

I agree that it's disabling, there are things I simply can't do (talk and do anything else such as cook, clean or drive at the same time, negotiate relationships at work without alienating people and cope with the stress of working with others, go on holiday with friends, share living space), I have a lifetime of insomnia, I take antipsychotic medication just to get me to fall asleep and then it conks me out for up to 14 hours at a time, waking groggily and only really conscious by about 3pm.

However. I did get through life (unhappily, painfully) thus far and I think the faking-it/masking that I must have done enabled me to live a normal-seeming life with periods when I was able to work and manage to get through the days.

It's always been next to impossible to get up with the alarm, wash regularly, clean my teeth, notice any bodily sensations at all, open and deal with paperwork, answer phones or emails. I have lived with guilt and dread my whole life, plus the consequences of my inaction.

I've never claimed benefits and I don't believe that PIP would be appropriate for me. Yes, it's hard to cope with public transport but I don't see why the other tax payers should pay for me to get taxis everywhere. That's on me, it's how I was born, I will suck it up and work odd hours to make life easier. It's different for people who need assistance with huge electricity bills because they depend on life-saving equipment at home.

My view is that the big plus is our society is now understanding and recognising autism and ADHD. If I had had this knowledge in my earlier life, I could have made different choices, found support, had a totally different life experience. To me, that's the gain, I don't need extra money to offset my "difference", that's just the way the cookie crumbled and I got dealt a brain like this.

The benefits system has to be reorganised, I suppose the only fair way is to have honest assessment of each and every person (not the ASOS fiasco with the "lost" paperwork and blatant lies they told to refuse vulnerable people their rights). I don't think I should get financial help, but there are other autistic people who might do, depending on their situation. What I do want, though, is for understanding of autism/ADHD and the judgment to stop. Money should go to the seriously ill.

Am I being hard?

I wake to go the bathroom and that’s it. I’ve been a participant in sleep studies for ND people (and didn’t manage to sleep)

I’ve learned that some people are hard wired to sleep for two smaller stretches over 24 hours and that I fall into that category. That doesn’t fit with the kind of 24/7 life we live now and there’s a tonne of other evidence that supports the theory that the rise in asd and adhd diagnoses that are poo pooed by many, are just ND people swimming against an ever increasing tide.

Not rambling at all, you make some good points that every case is different. The problem for Government is deciding who is deserving of benefits and who isn't. Its a horrible call to make, but also, it does have to be made.

When you're passed out for up to 72 hours how does your husband cope with working and looking after two ND kids etc?

Please tell me you/he has help because you all very much deserve it.

I mean plenty of single parents probably cope but if the coma comes out of the blue, it can't be planned for.

Because it’s an invisible disability in that there are no obvious physical props like a wheelchair. Coupled with a general attitude than you “can help it” and “it can’t be that hard” to do xyz.
Nobody can see all the paddling you have to do beneath the surface just to try and marginally function enough to pass as “normal”.
Just one example. My children are incapable of eating regularly or properly, because they don’t get the same hunger signals as neurotypicals, they will only eat when they are on the verge of collapse, and only packaged stuff because they can’t co-ordinate a meal or follow instructions. I get told all the time to leave them to it (they are 21 and 18) as if I haven’t thought of that before 🙄, because they “will eat when they are hungry”. Believe me I have left them to see how they handle it, on several occasions, over different ages, and they literally starved. They need constant prompting to eat and drink. It’s exhausting for me and it’s awful for them. It drives me mad that my kids are constantly told “you are not really disabled” by people who have absolutely no clue how difficult it is to do what is considered routine normal stuff.
And I sympathise with the sleep deprivation, the catastrophising, the masking, the ear worms, and the general squirrel on speed on a treadmill brain that is ADHD.
It’s absolutely exhausting, ON TOP of life, which apparently, according to NTs, is exhausting anyway.

My daughter may be able to hold down a part time job, but my son is going to struggle. He has no short term memory (properly diagnosed) and he cannot follow a series of instructions, which are both necessary skills for employment. He is very scared about his future.
Total sympathy from me to you.

Who is saying that neuro disabilities aren't disabilities, though? I would say that they clearly are. My dd2 has autism and clearly has to overcome difficulties her peers don't face.

I do think autism would be less disabling if the school system wasn't set up to assume everyone is nt.

I’m a bit confused you say you’ve worked since 16 but also that you are unemployable.

it’s clearly not a one size fits all.

Some audhd people (like me) can work but need some adjustments.

Some can work but only in some jobs - lots of creative industries packed with audhd people.

Some can work but it’s just hard for them.

Some neurotypical people also find work hard. That’s where the difficulty is. Who is to weigh up the difficulty or hardness of ‘masking’ vs the hardness of functioning day to day when you are, eg: morbidly obese or suffer depression or are greiving. Those people don’t get exceptions.

Then of course there are groups who genuinely cannot hold down a job. I assume my son will be one when he’s older. That group should be supported whether through voluntary opportunities or given benefits. I do always think a benefits package for anyone who is capable of literally anything is the worst case as being enabled to be isolated and stuck home all the time is terrible for literally anyone’s health

The problem is that they have become fashionable diagnoses (or self-diagnoses) for people who aren't severely affected, OP.

Genuinely disabled people are being marginalised within their own diagnostic category, which is being co-opted by people who may well be gathered at one end of the "normal range" spectrum but who are simply choosing a medicalised framework for challenges that are faced by very many.

Some of these "normal range" people are even clamouring to get the terminology of "disability" removed from autism/adhd discourse, calling it a "difference" instead. Of course it is a difference rather than a disability if you have pushed the diagnostic threshold to its absolute bottom limit or below! The solution to that is to stop medicalising yourself unnecessarily, not to trivialise a serious developmental disorder.

Anyone who points out this injustice on MN is vulnerable to an accusation of dismissing the challenges faced by people with autism or ADHD. But in reality, the failure to challenge it is harming vulnerable people.

Have things got worse then in the last eight years. If you were able to work for many years but can't now, what has changed or did you lose your job?

I was! I was a model employee in my younger years! People pleasing, smiling and bending myself backwards to help anyone who needs it. Autistic burnout is a real thing though, my twice sectioned ass is a testament to that fact.

^^ exactly this

Thats why its a spectrum

My son was diagnosed at three and completley non verbal
With a very limited understanding of world around
His presentation is very differrent to yours too
But you both have a disgnosis.

Id welcome a DM if you’d like to talk to someone who understands this xx

Good for you! The spectrum doesn’t treat us all the same unfortunately.

Because it does not always manifest itself as a disability? I know multiple people who became self-made millionaires as a direct result of their autism/ADHD traits combined with very lucky circumstances that allowed them to monetise their special interests and talent.

I would go as far to say that the majority of extremely successful artists, musicians and entrepreneurs are all on the ADHD spectrum. Being ND is just having a brain that's wired and works differently. The actual manifestation of the symptoms vary hugely depending on living situation, wealth and privilege.

Disability ‘tax’ is very real. Having to buy multiple pairs of shoes because the first pair that were suitable upon first wear are no longer suitable on the third wear due to sensory issues.

Having to stockpile ‘safe’ foods and then when they get discontinued they either no longer eat that food ever again or you have multiple wasted packs of things in the search for a suitable alternative.

Having to buy ear defenders/earplugs to minimise sensory overload, but the first pair aren’t quite right due to sensory issues so you have to order a second or even third pair.