People-Pleasing and Autism: Finding My Voice

It’s often said that people on the autism spectrum tend to be overly accommodating and struggle to assert themselves, and that’s largely true for me. Over the past few years, I’ve come to realize how important it’s been throughout my life to avoid being a bother. I’ve definitely gotten better at offering criticism, complaining, and speaking up as I’ve gotten older, but I suspect I’m still far less comfortable doing so than most people.

It’s Easier When Asked Directly

Sometimes it’s easier for me to give negative feedback when prompted with direct questions. I have annual meetings with the caseworker responsible for my home support, and when she asks straightforward questions, I try to answer as honestly as I can. When asked, I can explain how difficult it’s been when my support workers and I have struggled to communicate due to their limited language skills, that I haven’t received help with recycling (even though it’s included in the support plan) because they don’t know how, that I haven’t been able to use all my allocated support hours each month because the workers haven’t shown up or have been consistently 10 minutes late, and just generally needing breaks, etc.

Losing Precious Support Time

Being 10 minutes late on a single occasion isn’t a huge deal, but the truth is, it’s easy to lose valuable support time if it happens repeatedly. If you have support twice a week and the worker is 10 minutes late each time without making up the time, I lose almost 1.5 hours a month! The caseworkers have noticed this, and last year, one asked me why I hadn’t contacted the municipality to explain that I wasn’t receiving my full support allocation. And yes, why haven’t I? The answer is that I’m uncomfortable complaining – I simply don’t want to be a nuisance.

Picking My Battles

I do complain sometimes, though. I often write to the supervisor when support is completely missed. I’ve also contacted the caseworker when serious issues arise, like major breaches of confidentiality. In fact, a couple of support workers have even been dismissed as a result of my complaints. Because I do complain from time to time, I don’t want to bother the caseworker and supervisors over every little thing. If the workers are 10 minutes late without offering to stay longer, or want to take breaks, I’ve never complained of my own accord. I feel uncomfortable complaining and feel guilty every time I do, so I’ve sort of “chosen my battles.”

Making the Most of Support Hours

A couple of years ago, I mentioned the coffee breaks to the caseworker, and she asked if these breaks were at my suggestion. Was it I who needed to rest, or were the breaks the support workers’ idea? When I explained that I often used to have coffee with them years ago but haven’t wanted any breaks at all for many years, she reacted, saying that I absolutely shouldn’t lose support time because the workers need a break. The intention isn’t for us to sit at the kitchen table chatting away the support time, but for that time to be used effectively! For example, if we’re doing laundry and the washing machine is running, we shouldn’t sit for half an hour at the kitchen table waiting for it to finish – we should be doing “support tasks” in the meantime!

I’d Feel Terrible

The caseworker suggested I contact her every time the support workers proposed socializing instead of doing support tasks, but I still haven’t. It’s just… difficult, and I’d feel so guilty afterward that it wouldn’t be worth it. But I have sometimes tried to encourage change. Once I tried to motivate a worker to follow the support plan instead of relaxing at the kitchen table, explaining that I hadn’t been approved for support for social interaction. She told me she was tired from working several hours with other clients and would appreciate a chance to relax. “And the caseworker doesn’t need to know anything, because I certainly won’t mention the coffee break in the documentation,” she said.

It Could Have Been a Disaster for Her

I felt guilty for even trying to speak up. And I knew how important this job was to the support worker. She was middle-aged, had never had a paid job before due to disability, and was thrilled to finally have a job as a home support worker! She also had significant debts, so losing this job would have been a disaster, which could have happened if I had gone to the caseworker and “tattled” on her for being too tired to work. I know the support is meant to be based on my needs, but I feel very uncomfortable if someone has to feel bad or get into difficulty because of me! It’s hard to explain how uncomfortable it feels, but I get so much anxiety that it’s even physically distressing.

It’s Hard for Others to Understand

When I tell other people how I feel, most think I should just speak up and that I “absolutely shouldn’t feel this way.” That frustrates me, because it makes me feel like they don’t understand how EXTREMELY uncomfortable it is for me to speak up. It takes a lot of energy, and I’m completely drained afterwards. Sure, I could force myself to “challenge myself,” but I’m 46 years old and have learned that challenges aren’t always good for me.

Why It’s Hard for Autistic People to Speak Up

I’ve often wondered why many of us on the autism spectrum struggle to assert ourselves, and I think there are a number of possible reasons. For some of us, it could stem from negative experiences in childhood, where attempts to set boundaries weren’t respected. Maybe people would try to hug us or shake our hands when we didn’t want to, and when we protested, we were just mocked. Or it could be connected to the fact that a lot of autistic people also identify as highly sensitive. I personally experience many traits of Highly Sensitive Person (HSP) as well. I’m really negatively affected if someone – like a support worker – has to go out of their way for me when they’re already tired. And then there’s the fact that autistic people can often have difficulty articulating our thoughts and arguing our points effectively, which can also make speaking up feel uncomfortable. It’s just a combination of things, really.

Maybe a Good Approach?

Now I have a new support worker. I was really impressed when she explained that, due to medical reasons and a 1.5-2 hour commute, she would need to take 20-minute lunch breaks at my place on each shift, but she planned to bring her own food (some support workers expect the client to provide it) AND stay 20 minutes longer, meaning the breaks wouldn’t count against my support time. Wow! So many support workers have instead taken it for granted that support sessions should include longer breaks, and very few have offered to make up the time afterwards! It’s incredible that my support is finally working without me needing to “set boundaries” and complain! And that might be a viable strategy for some autistic people: maybe we should try to seek out people who respect our boundaries without us having to speak up!

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