Today was really hard for me. I couldnāt even get out of bed for a few hours and then I had to get right back in. Normally I do it because Iām tired and need rest but I couldnāt physically get my arms up today. Iām so tired of life circumstances being horrible. My demand avoidance was up so much I couldnāt even gather energy to change my nephews diapers for a few hours.
I need more help than Iām getting. Iām little/no help to anyone like this and yet everyone expects me to be of help still. And I just sit there and do nothing because itās all I can do.
I keep saying āOh Iām burntoutā but it has no lift up. Iām just like this now, I just get no breaks significantly helpful. Iām already disabled, living in lifeās shit situations just make me unable to even use the toilet a majority of the time.
Once Iām able to get a job, I donāt know how Iāll maintain it. I need to apply for disability most likely, but I want to try working at a library or at home. Somewhere quiet I guess, I just donāt know.
PDA profile autistics- what is your work experience like? Are you able to get breaks you need?
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While work isnāt right for everyone on the autism spectrum, the majorityĀ of autistic people want to work and have much to offer. But efforts toĀ help them into work and stay in work are failing. Our survey of overĀ 2,000 people indicates that the full-time employment rate for autisticĀ people remains stubbornly low at 16% ā just 1% higher than the figureĀ from our 2007 survey.Ā Combined with the part-time rate of 16%, thisĀ gives an overall employment rate of 32%. This compares with aboutĀ 80% for non-disabled people and 47% for disabled people as a whole.
How do you work? Like how do you have enough spoons?
I was going to gloss over this and be the brave and stoic person that disabled people or people with chronic health problems are expected to be, but honestly that feels bad, so iāll be honest! Itās a lot bigger of an issue than just me.
Honestly i can only work by doing not a lot else, as depressing as that is, because i need money despite not being physically or mentally able to work enough hours to earn enough money to financially support myself. ĀÆ\_(ć)_/ĀÆ
I donāt really know how apart from that work is my number one priority in life so I write off most other things? (which is not a good work life balance at all, but whatās the alternative?)
I used to push myself to work full-time in the hope that the more i did, the better iād get used to it and would learn to be able to do it. Thatās not true, and i just made myself ill to the point of having to be signed off work multiple times, so working reduced hours is the only way i can manage to work at all.
That was really hard to accept because I grew up without a diagnosis and being constantly genuinely-well-meaningly encouraged (by people who truly believed it) that I could do anything asked of me if I put my all into it. This obviously reflected in feeling like anything I couldnāt do was a personal failure, because logically if i could do anything I set my mind to if I tried hard enough, then not being able to do that thing meant I just wasnāt putting in enough effort yet, and I needed to do more (even if i was giving it all i could).
So I work part-time, and when iām not there mostly save my energy for work - i canāt really got out with friends (or date) because meeting new people or even just going out with people i already know takes so much energy, and i often end up feeling ill or having anxiety/panic attacks. If I do too much overall, I start to lose mental abilities like memory and concentration (and just being able to get my head around things), and Iām near-constantly tired + physically ill, with scarily worse physical symptoms too if I overdo it. I try to do some nice things when i can, but i donāt really leave the house a whole lot at the moment.
I asked for reasonable adjustments at work, like being allowed to wear headphones so iām not as exhausted by sensory overload, and having a 10 minute break. I stim when my brain is telling me the bad things. I count down the minutes until I can take my break (that i get because of reasonable adjustments), and then again until I can go home.
I picked a job that doesnāt involve a lot of talking to people, no using a phone, and is very structured, to put minimal strain on myself mentally. (Iāve had lots of retail jobs in the attempt to desensitise myself but that largely doesnāt work + leaves me mentally and physically Ā ill to the point of having to take time off or quit.) And if Iām feeling good, I like my job! I can normally do it well and I care about making things good and right, so Iāve made myself valued as much as I can. Itās just feeling bad that takes away my resilience for dealing with the hard bits.
When I get home, I go straight to bed if Iām at meltdown point and canāt deal with being awake. I spend most of my free time resting so Iām not too mentally and physically depleted to do the next work day. I try to bank enough emotional/physical/mental energy to embrace doing my job, be actively kind to the people around me, and be able to baseline function so I can do my job role.
I canāt help thinking that it isnāt sustainable, but what can i do? It seems like there are a hell of a lot of autistic or otherwise disabled/chronically ill people faced with the non-choice between overextending themselves and making themselves sick to earn āenoughā money (if they even are able to do that), or setting reasonable boundaries and consequently being unable to support themselves. Ā
Iām okay for the most part though! I spend some money on material things that make life nice short-term, like my camera and laptop, or nice clothes so i feel like iām making an effort, or stationary so i can do nice journalling things. I try to make small things meaningful, and to build as rewarding a world as i can (even if it is really little). Iām incredibly lucky that my parents can support me financially in terms of rent/living, although i pay my medical bills and deal with all the other costs. If I was on my own I donāt know what Iād do.
I, and lots of other autistic and disabled people, are constantly explicitly or implicitly asked or encouraged to work more, often well-meaningly, and itās kind of soul destroying - Iām doing as much as I can to have a job and consequently to ābe a valued member of societyā but itās not enough. I canāt support myself because i canāt earn enough to do that, but somehow admitting that is being negative and putting myself down - lots of people think I should believe i can do anything i can put my mind to and work to do it??
Part of me wishes Iād been diagnosed as autistic when I was young so I wouldnāt have grown up being perceived as an abled person and expected to achieve to neurotypical standards, both by myself and others. The rest of me is relieved that I didnāt get diagnosed before I was able to self-advocate, so I escaped any ableist treatment when I was young.
I hope that this doesnāt come across as whiny or overly negative. I didnāt want to act like everything is easy and fine because there are so many autistic people out there struggling, and being told that we should be struggling because we should be doing more. That isnāt right. I just donāt know what to do about it, but pretending everything is fine and easy isnāt going to help any of us. So in the meantime, i just try to make the best of it, make adjustments, and prioritise to get by.
IT consultancy which hires only autistic people launches in UK
IT consultancy which hires only autistic people launches inĀ UK
A Germany-headquartered IT consultancy which exclusively hires IT staff with autism has launched in the UK, searching for channel partners to link with.
Auticon is a social enterprise which launched in Berlin in 2011 after its founder was disappointed with the work options available to his autistic son. Since then, the firm has grown considerably and hires dozens of autistic IT consultants inā¦