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,

Parents
  • I think some may think that being a care assistant can be a stressful job that may trigger your autism. I am diagnosed with autism to and have worked in a NHS trust as a activity volunteer and was employed by an OT. They asked me if I needed adaptations to do the job. Some people also if you have a condition  may think you need to take care of yourself before you can help others. Autism is different though and something that can be managed and this is a bit of an old fashioned view that you cannot help others if you struggle yourself at time.

    I have an history of an eating disorder to and have osteoporosis as a complication. I sometimes took part in light exercises sitting down on chairs for those who have bone impairments at work and the OT said to me about whether I should take part that some people like to see you have lived experience of things.

    May be try and speak to an OT staff to help you to know you are good at your job and suitable.  I only discussed my situation with the staff responsible for my role.

    I read the other day that Bulimia is linked to ADHD and I find that interesting now more people seem to be diagnosed with AUHD. I looked it myself, but I don’t have that co-morbid condition.

Reply
  • I think some may think that being a care assistant can be a stressful job that may trigger your autism. I am diagnosed with autism to and have worked in a NHS trust as a activity volunteer and was employed by an OT. They asked me if I needed adaptations to do the job. Some people also if you have a condition  may think you need to take care of yourself before you can help others. Autism is different though and something that can be managed and this is a bit of an old fashioned view that you cannot help others if you struggle yourself at time.

    I have an history of an eating disorder to and have osteoporosis as a complication. I sometimes took part in light exercises sitting down on chairs for those who have bone impairments at work and the OT said to me about whether I should take part that some people like to see you have lived experience of things.

    May be try and speak to an OT staff to help you to know you are good at your job and suitable.  I only discussed my situation with the staff responsible for my role.

    I read the other day that Bulimia is linked to ADHD and I find that interesting now more people seem to be diagnosed with AUHD. I looked it myself, but I don’t have that co-morbid condition.

Children
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