AIBU to ask why ADHD and autism are dismissed as disabilities?

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.

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?

@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.

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

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.

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 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.

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 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.

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