A note on PDA and mobility

I wanted to write a bit about Little Miss M’s needs around mobility. Mobility is the ability to move or be moved freely and easily, and there are times when Little Miss M is unable to walk and needs help to move from one point to another.

We continued to use a pushchair for longer than most people would say is typical for a growing child, to aid this but now, age 8, she has outgrown this option so we’ve started using a wheelchair. It felt like a big step, going from a pushchair to a wheelchair and we didn’t take the decision lightly, but right now continuing with a mobility aid is a necessity for Little Miss M.

Just because she has outgrown the pushchair, doesn’t mean she has outgrown the need for one.

You see, for her, Pathological Demand Avoidance (PDA) can make walking a demand at times, especially when out and about in social situations and her anxiety is high, meaning her ability to tolerate demands is lowered. Walking can be a demand too far, on top of everything else she’s coping with*, and if she didn’t have the help of the wheelchair, demand avoidance would literally leave her unable to move or be moved and incredibly distressed.

Transitions can also be demands and trigger demand avoidance around leaving somewhere but they can also cause big emotions because they signify the end of something which can overwhelm Little Miss. Being overwhelmed by these big emotions can lead to her shutting down and this shutdown can also be the reason she is unable to walk.

There are also times when using a wheelchair enables her to access something she otherwise couldn’t do and times when using one increases her enjoyment of an experience and benefits her mental health, not least because she is having a positive and more comfortable experience because of it but also because it allows her anxiety to reduce.

*Sensory overload and information overload, not to mention being overloaded by demands, uncertainty and anxiety when out in public places is exhausting and the chair allows her some respite, a place she can retreat to when needed, to rest and recover and take the pressure off of her until she feels better.

I was reminded of how necessary the wheelchair is today – we went to our local park which is a 5 minute walk from our house, at most, and we didn’t take the wheelchair. When it came to leaving the park to walk the few minutes home, Little Miss M couldn’t do it. She crumbled and was visibly distressed. As Mr M was with us he walked home to get the wheelchair while Little Miss M and I sat on the ground waiting for him to return.

To passersby and others at the park it must have been very confusing – here was a child who had been perfectly able to walk, even run, swing, climb, bounce and slide for the previous 30 minutes or so, a child who had skipped perfectly able to the park but was now suddenly unable to move and was immobile without the aid of a wheelchair.

This is where her often ‘invisible disability’ becomes visible to others but I know there is a lack of understanding around these mobility issues in PDA and in autism generally so I thought I’d write about our experience in case it helps others to understand or look at things differently.

“I can walk but I have problems walking sometimes and my buggy helps me.” – Little Miss M, age 8