Navigating Life with Autism Requires the Right Kind of Support

People on the autism spectrum often experience fluctuating energy levels and may need to prioritize essential tasks over everything else. It’s frustrating when professionals try to push us into doing things that aren’t a priority for us, that we simply don’t want to do, or that we don’t have the energy for – even if their intentions are good. But it’s just as unhelpful when professionals don’t encourage us to do things we actually need and want to do, simply because we’re struggling with motivation.

A quick note

A quick note for my readers: In Sweden, a “boendestödjare” (pronounced boo-en-desh-to-yah-reh) is a support worker who helps people with disabilities with everyday tasks in their own homes. They can assist with things like cleaning, appointments, and generally navigating life. Think of them as a personal assistant with a focus on independent living.

Nagging vs. Being Left to Sink or Swim

I’ve experienced both extremes with my support workers. I’ve had several who completely ignored my preferences and pushed me too hard. One worker, for example, was determined to make me get rid of my balcony planters – even though dandelions were happily growing in them! I wanted to keep them, but she kept bringing it up, and it just felt like nagging. I understood she was trying to motivate me, but it felt like I wasn’t being heard, and I struggle with setting boundaries anyway.

The Problem with Unsolicited Pressure

However, it’s equally problematic when support workers do absolutely nothing. I can get really stuck when it comes to necessary tasks, and some support workers just don’t seem able to help me get things done when I’m struggling. Some are totally disengaged, so simple things like reporting maintenance issues or scheduling doctor’s appointments just don’t happen. My regular support worker is fantastic; she seems to instinctively know when to offer encouragement and when to give me space. If I tell her I’m too exhausted to call the doctor, she acknowledges that it’s important but assures me we can do it at my own pace to avoid burnout. That approach works wonders! But too often, support workers just let me flounder.

My Dentist Fears

I’d really like to buy an electric toothbrush – a reader actually suggested it because my teeth are bothering me – but I’m terrified of going to the dentist. I’d also like to book an appointment with a dentist who specializes in treating people with dental phobias. My fear isn’t about the dentist themselves; it’s purely a sensory issue. I find the physical sensation of having tartar removed incredibly unpleasant. While others might be afraid of pain or needles, for me it’s the physical feeling that’s the problem.

I Need Someone Who Gets Me

Because of all this, I really resist going to the dentist, even if they specialize in helping people with phobias. That’s why I need a support worker who truly understands me and can make the appointment for me, because I simply can’t bring myself to do it. This support worker needs to be able to motivate me in a sensitive way, understanding that this is genuinely difficult for me, and to help me pace myself so I don’t get overwhelmed. Unfortunately, I don’t currently have a support worker who can provide that kind of support.

My Current Support Worker is Trying

The substitute support worker I have at the moment is lovely, but she’s only 18, lives at home, and is quite shy. We don’t talk much because she’s very quiet. She helps me with cleaning and does a good job, but she doesn’t offer the kind of interaction or specialized support you get from experienced support workers with expertise in autism. She’s helpful with the practical stuff, but I need someone who can provide motivational support as well.

Sometimes I Feel Like a Seven-Year-Old

It might sound silly that I can’t order a toothbrush or book an appointment, but it’s so anxiety-inducing that I completely freeze. The truth is, I have a really uneven skill set. Just because I can travel around Sweden on my own and give lectures about autism doesn’t mean I can handle this kind of anxiety. It’s like a typically developing seven-year-old might be able to articulate their needs and make a phone call, but you wouldn’t expect them to book their own dental appointments. I can’t really explain why I get so stuck; it’s just…sometimes I feel like a seven-year-old when it comes to things like this!

It’s Like Weight Watchers

My difficulty with these tasks is similar to trying to adopt a healthy lifestyle. Those of you who follow my blog know that health and wellness are a special interest of mine, so I have no problem eating well and avoiding processed foods. But many others, even those who want to eat healthily, might struggle without the right support. They might need the structure of something like Weight Watchers to stay motivated and achieve their goals. I, on the other hand, need the support of my support workers when I need to order a toothbrush and book a dentist appointment. I know how to do it, but I still can’t bring myself to do it. That’s why I need support workers who can play the same role as Weight Watchers – providing support for people who want to take a step forward but need a little help getting there!

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Book Me

Please reach out to me via the contact form if you’d like to book me for a lecture on autism or an interview about my life with autism. You can find more information about me and my lectures here.

Don’t be afraid to reach out for help if life feels hopeless! Here’s a list of helplines and phone support services in the US you can contact if you need assistance. For people outside the US this page lists helplines for people in need of immediate mental help support during a mental health crisis.