Why do people question me when Working as a Care assistant for the elderly and act surprised when I say I’m autistic and living in supported living ?

im 37 years old, i received my diagnosis of ‘Atypical Autism’ at the age of 23.

when I was growing up in the primary school, I remember being too anxious about going into the dining hall for school dinners, (I was school dinners as my parents both worked long hours, that meant they didn’t have to cook a dinner when we got home). But I often just sat with a close knit group of friends (who I followed around) and the packed lunch table so, didn’t eat anything.

This continued into middle school, then my parents argued and later divorced, teachers, could see I was quiet and anxious and I skipped meals at school, that lead to eating lots at home then I found I could make myself sick so got diagnosed with bulimia, I used to also get bullied for having stary eyes (something I did when I was overwhelmed).

Anyway  long story short, at times I’ve been underweight (due to the eating disorder). I’m now doing better but it’s still something I manage, and I think I’m always going to be alert to it (if that makes sense) and protect myself from triggers. 

All this hasn’t stopped me from wanting to work, I got my first job in a elderly care home as a kitchen assistant (I’ve always been interested in helping others, I guess because I can empathise with others who struggle …yes autistic people do have empathy) 

whn I was 18 years old I started working as a care assistant at a care home.

I have struggled to maintain jobs because of either outside stress (they can be little things) but make it harder to cope, or because the managers haven’t understood me and my need for a fixed working pattern.

At the moment I’m working as a causal (on a ‘bank’ contract) because then I can have control over it, (instead of a manger handing me out a rota that changes every week) but I’m hoping that one day, I can get back into a regular part time position. 

I had to leave a job last year, I was an activities Co ordinator, which I loved, but I found I put too much pressure on myself and then moved last summer from my mums into a supported living house and I couldn’t manage the anxiety of moving house and doing the planning work, I consequently had a dip in my health (eating disorder) but managed to turn it around,

so also being on a ‘casual’ basis currently with me being in control of booking and focusing on not overdoing things work’s well.

I do hope to one day be able to manage to rent a 2  or 3 bed house in my name and share it with someone,  (I don’t think it’s an unrealistic dream) I hope one day I could work full time, I know everything around me would be nervous in me saying that, because also when I’ve had low energy level days, I’ve actually collapsed with the mental  exhaustion. It really does make my limbs feel heavy. 
So part time work would be, I guess a middle agreement. I hate being in benefits, but I guess I may always have to rely in them. Because managing autism/fatigue and the eating disorder never goes away.

i don’t like it though, when I feel judged or a fake when people know where i work in a care home as a care assistant and then I tell them that I live in supported living and have autism. That I feel is adding to the pressure in my head that I need to hurry up and live more independently. Then I also worry about moving again! 

Then I’ve lived on my own before and I couldn’t cope and ended up cutting myself, I k ow I don’t want to live on my own again. I’m 37, single, asexual and I feel I’m being in a lot of areas in life,

  • People with disabilities can and often do work. The man who got first diagnosed by Leo Kenner, Donald Triplett, worked in a bank. So if people think, that autistic people can not work, then it would mean, that he would have to be undiagnosed post mortem (passed away in 2023 at age 89.

    I also often have stary eyes and other people find it funny. I'm not diagnosed so far, but my dates are autumn this year. My therapist said first he thinks it's atypical autism,  then changed his mind, said probably Asperger Syndrome. In Germany it's still being diagnosed due to ICD10 criteria. So I will find out in autumn (hopefully) what it is. Having misunderstandings is frustrating.

  • Do not listen to what others say, you are doing the best for yourself Slight smile

  • Hi Sally!

    Wow, you sound like you've been through a great deal but have come to the point where you really know yourself, and that is honestly inspirational. Other people can have their opinions, but knowing what you can and can't handle and managing it is actually really impressive and must have taken a great deal of self-learning, as it really isn't an easy thing.

    What a great idea to be a bank carer, as you have control of your hours, I've not heard of someone doing it that way before but it makes total sense as it helps with the fluctuating energy levels we have to deal with autism. And it's lovely to have a job where your are looking after people too!

    And the fact you have a housing situation that suits your current needs, I wouldn't worry about people not understanding, it's hard to describe what burnout is truly like, but people do understand that here. I wish people would be less judgemental, especially if you've had to cope with the eating disorder and harming at points.

    I like your goals, and I wish you well with them, especially finding someone to share space with. 

    Welcome to the community!