To feel that not everyone is capable of “more”

[Kunitz]

Following a conversation with a friend and hearing her very strong opinions on how basically everyone is capable of bettering themselves it got me thinking. So I (rather stupidly on reflection) confessed to her how anxious I was feeling about the future specifically with regards to my “benefits” stopping in a couple of years when my ds leaves school. Now before I get jumped on for daring to confess I claim benefits let me add that I work part time and my dh works full time. The majority of the money we receive is due to the fact our ds has autism and receives DLA. I also have adhd and autism plus other conditions however I have never attempted to claim pip for myself as I know I will not get it and can’t bare to put myself through the ordeal.

So, like I said I work, as does my dh. DH hasn’t been diagnosed with anything other than dyslexia as a child but it is clear to us and quite frankly anyone who knows him that he is in the spectrum. He is a lovely man an amazing father I really couldn’t ask for more in a partner. However at age 50 he has worked all his life in jobs that pay minimum or just above minimum wage. He has tried to “improve himself” (his words not mine) previously and ended up burnt out and breaking down admitting that he isn’t capable of more than he does and to be fair he works blooming hard in a manual job and takes on extra responsibility and steps up to team leaders jobs when he is offered but basically he feels he isn’t capable of more.

Then there is me. I earn £17 per hour so more than minimum wage but in my current job I only work one maybe two days per week as that is all I can do without feeling like I’m burning out which I’m aware to all of you NT that may sound a bit pathetic. Plus to be honest the job that I do is quite niche and most of the jobs advertised in my field are part time. I could push myself to work full time but due to my limited and very niche skillset I’d end up having to change jobs and would be on minimum wage doing something completely unknown to me and whilst there is nothing whatsoever wrong with that (I have worked on NMW a number of times previously) I actually wouldn’t end up that much better off financially.

So you can imagine my friends face when I said this to her. We currently get UC, our ds gets DLA and I get carers allowance as I’m just under the earning limit to claim that. Now I imagine most of you will think we are taking advantage of the system but it isn’t the case. I want to be able to work full time without feeling completely burnt out (not just very tired like most NT feel working full time) instead or claiming top ups and to be fair like I said I will have no choice in two years time when my 14 year old ds leaves school band it’s making me feel very anxious.

My friend basically told me that everyone unless severely mentally or physically impaired can work full time and no one needs to be on minimum wage and should push themselves to do better. Well I have pushed myself to do better but I know my capabilities and I have reached my peak. Due to past trauma, anxiety, low self esteem, abuse I am not the most confident of people, I can’t bare being out of my comfort zone to the point I’ll have anxiety attacks. I push myself often to do things that “normal” adults my age do and force myself into uncomfortable situations with the hope i will get used to it but I don’t.

I am not trying to make excuses for myself or my dh although I understand it probably seems that way. I just wanted to express to my friend that me and dh work hard but to our personal capacity and that not everyone is capable of more. She thought I was being ridiculous. Am I being ridiculous to think this way? Anyway I’m sorry for my somewhat incoherent rant. There is no point to it really other than for me to offload.

I over think things constantly worry about the further every single day of my life yet I can’t seem to make additional changes to help things turn out ok down the line. I now know since my recent diagnosis that this is likely due to the fact that in addition to my autism/adhd I am extremely demand avoidant, I have (to some extent) poor executive functioning skills, I’m indecisive, I have no sense of self, low self esteem etc etc etc. Like I’d said these aren’t excuses just facts. I try my best every day putting one foot in front of the other yet I never feel good enough because I’m incapable of bettering myself and therefore condemn myself to a bit of a sh*tty future. Thanks for reading. That’s my pitty party story for one over and out.

the only thing I wonder is that you say you’re burnt out if you work more than 1 or 2 days a week and that it’s different for NT people, but how do you know its different for them?

I work full time and feel horrendous most of the time, exhausted, stressed etc. So maybe we all feel like that and just put up with it.

Not trying to be provocative btw, just not sure how anyone can say how it’s different as nobody knows what it feels like to be both NT and ND

I think this is an important point, OP.

Caring for a child with autism is a job in itself, so I don't blame you at all for wanting to keep your stress levels to a minimum.

In more general terms though (and ignoring neurodivergence) comfort zones only grow through biting off a bit more than you can chew. I started a small business on top of my part time job recently and I felt so sick and anxious with stress and pressure a few weeks ago. But I found ways to manage that stress and focused on getting decent sleep, and putting in place good new routines and now it just feels normal to me to be doing two part time jobs. I don't have that anxiety anymore. I feel accomplished and happy with what I've done. Sitting with the anxiety and finding ways to manage it is the key. I believe many people are capable of more than they do but it is that fear of feeling discomfort / anxiety that keeps people stuck where they are sometimes.

As someone with autism, when I say I’m burnt out, I don’t mean that I feel horrendous. I mean that I literally cannot function. I have been so burnt out before that I can’t wear coats with zips or trousers with buttons because I literally can no longer figure out how to do them up.

I get skill regression, I go mute and can no longer communicate. I can’t go to a shop or sit in a car as I get so overwhelmed I am literally sick.

I imagine that’s exactly what the diagnostic criteria are designed to pick up on. When someone is assessed for autism or ADHD, a big part of what’s being looked at is functional impact, meaning whether the traits actually cause significant difficulty in daily life.

So the people who are able to “feel like that and just put up with it” probably wouldn’t meet the threshold for diagnosis, whereas those who genuinely can’t sustain it without burning out do.

There’s research backing that up. Around one in a hundred people in the UK are autistic, yet autistic adults have an employment rate of only about 30 per cent. For comparison, the rate for non-disabled adults is around 80 per cent. Adults with ADHD also report much higher levels of job burnout than those without, and around 30 to 40 per cent of neurodivergent adults overall are unemployed, which is roughly eight times the rate for non-disabled people. More than half of neurodivergent employees say they’ve had to take time off because of stress or burnout linked to their neurodivergence.

So while lots of neurotypical people feel exhausted by work, for many neurodivergent people that exhaustion crosses the line into real functional impairment, and that’s exactly what those assessments are meant to identify.

Yes, exactly.

I get so fed up of posts from people saying “well I struggle with that too and I’m not autistic” - great, but I don’t struggle, I literally cannot function.

I also think this.

OP focuses a lot on what she can’t do, and how NT people can’t possibly understand how hard it is.

And that’s fine, but also need to reflect it back the other way.

FT work is hard and draining and relentless. Add in raising a family, health challenges and everything else and it can be hell for many many people, neurotypical or not. It’s not ok to say “well you’re NT so can handle it, it would be too much for me” because that’s not giving the space to acknowledge that actually sometimes NT people feel like they can’t handle it either, but for many there is no other option.

Let her think whatever she wants, and forget about her. She doesn't sound much of a friend to be honest. You know you are doing your best. In the future a job you might never have considered/ heard of may present itself to you and you can decide then if that's a step forward you want to take.

My theory is that we need life to be more affordable (council housing to bring rents down) and jobs need to be non traumatising (outlaw bullying and similar bad behaviours at work). And adjust our thinking so it’s not the end of the world if you have to wait for something.

There seems to be a lack of understanding about what autistic burn-out is, similar to the misconception that if a wheelchair user can walk a little on a good day, she can do so whenever she wants/needs to.

I think it’s people feeling aggrieved because they feel unsupported and that they’re paying too much tax and too much for necessities, looking at people disabled by autism or adhd and not believing their ‘can’t’s aren’t ’don’t want to’s - when many don’t want to.

I have a few years until retirement. It will be a pretty frugal one due to choices I have made. I say choices but I realise I am ND but not diagnosed and unlikely ever to be. My own children/ menopause etc brought me to a gradual realisation.
I beat myself up less for my 'career' of low paid but worthwhile jobs. I am who I am. Compared to my peers/ family I have massively underperformed in life. The older I get the more I accept that as someone without diagnosis or appropriate support this is not unexpected.
If I could go back in time and be more understanding of my quirks maybe life would have been different. But here we are...
You need to decide if where you are at is 'right' for you or if you want change.
As for your friend...she just doesn't get it...

NT people burn out too. But the same support structures are in place for them as autistic people.

My nt husband had a total breakdown. The GP referred him for counselling, gave him setraline and signed him off work for 9 months In the end. He then had occupational health create a phased return Which lasted 3 months and he hot all the annual leave he accrued of sick to take across the next year. If i hadn't earned so much, he'd have accessed universal credit.

I assume if he met the criteria he might have claimed pip, but he didnt meet the criteria, just like many autistic people dont. There's no special treatmentm

We can also all decide to not work full time if our child has dla and we are eligible for carers. This isnt reserved for autistic people.

I’d agree with this. I usually cannot walk in a straight line at work as I am so exhausted. I go to bed at 8pm after the kids. I work full time. That’s life. It’s shit but that life.

You don’t have to work full time if you can afford not to, but I don’t think people should be funded to work part time just because find full time overwhelming. We all do.

Again, that’s not what autistic burnout means.

When I am burnt out, I can’t tie my laces or do up a zip on my coat. I can’t walk round a supermarket or go to a shop because the sensory overload is too much. I often can’t even answer basic questions because I just go completely mute.

Yep, very few people understand autistic burnout. It’s not feeling tired or being snappy or stressed, or maybe crying a bit more than normal.

It’s not being able to do basic self care. You lose basic life skills, you go mute, you have shutdowns.

I’m well aware of what autistic burnout it thanks. I have an autistic child. We don’t claim benefits for them. We don’t want to.

I don't think you are aware of what autistic burnout is if you don't know the difference between a NT person going through stress, and a ND person going through stress. Generally, thresholds for NT people going through stress are quite high.

For ND people to go through stress, literally one thing could go wrong or overwhelm us and that's it. We're completely wiped out for days/weeks/months. It's not just stress for us, or a mental breakdown that lasts for a year. I was burnt out for all of my secondary school life, college life and working life. I can now no longer work because of the position it puts me in to do so.

"and no one needs to be on minimum wage and should push themselves to do better."

Who does she think is going to be caring for her parents whilst she is doing her highly paid job.

Generally good advice.

If you have an autistic child, maybe you should learn to have a bit of empathy for those who have no choice but to claim benefits.

Exactly. I can’t work full-time. Every single time I’ve tried, I’ve burnt out, ended up on medication and suffering with skill regression that takes months if not years to recover from.

I’m very fortunate to be able to run my own business and manage it with part-time hours but that’s only because my DH and my parents can help support me - if not I would have no choice but to claim benefits.

What annoys me about "I have an autistic child" is it's similar to "I can't be homophobic because I have gay friends/a gay family member" or similar things

Exactly.

PP has no idea what burnout is because a) she’s never experienced it and b) her child is a child, not an adult who is facing the demands of the real world while also living with an autism diagnosis.

I would love to work full-time and IRL I actually find it incredibly embarrassing that I can’t. It’s something I’m working on in therapy at the moment.

It's great that you're in the position to be able to manage without benefits. Your autistic child will be an autistic adults one day, and may have to claim for themselves, though.

I know how you feel r.e. the embarrassment. I'll openly talk about it online (well, only on Mumsnet) because it's anonymous. I won't talk about it in real life because it's something I'm genuinely ashamed of. People just don't understand