There is a post going around Facebook and Twitter right now called the “Angry Autism Advocate” bingo. You may have seen it. It’s basically talking about autistic people that are presumed “high functioning” attacking parents and caregivers, and you can tell it’s them based on things like hair colour and anime profile pictures? Who knows. Anyway, it of course stems from a place of frustration. Maybe misplaced frustration, but frustration all the same. I can respect frustration, the system sucks.
A lot of parents of children with autism who face many barriers use the argument that their child cannot self-advocate, so therefore, anyone who can go online and become an activist is not anything like their child. I would argue that having very similar neurology is being “like their child”, but regardless of that argument – I can see how those parents could see that as a big disconnect between someone online and their child.
Self advocacy isn’t restricted to Twitter, though. You don’t have to be on social media to self-advocate. I think what these parents mean to say is “my child can’t advocate using words that others can understand easily and in what is deemed a “socially acceptable” manner. Which may very well be the case. But until we learn to start respecting “behaviours” as self-advocacy, you will always see your child as someone who cannot advocate. Let me give you an example. A few years before my diagnosis, I was working with disabled adults with high needs. A particular person I was supporting was 40+, non-verbal, had very little communication ability (no AAC, no alternative form of communication available to them – reasons unknown), and was losing mobility. Now, if you paid any bit of attention to this person, you could clearly sense they were frustrated at their lack of mobility, frequently attempting to move their wheelchair with their feet, kick off the footrests, etc. They were letting us know that they were mad, and kicking off the footrests let us as staff know when this person wanted to move on their own (not be pushed from the back).
One day, while I was helping this person dress, I was taking longer than usual. I may have been tired, clumsy, I don’t remember. When this person was getting dressed (at the time I was supporting) they would put their arms around me and stand up – which took a huge amount of strength, energy, and probably hurt. Maybe because I was taking longer than usual, this person first swatted at me, then pulled my hair. Maybe this person was in pain from standing, maybe they didn’t want to be touched, maybe they just wanted me to hurry the hell up. Regardless of the specific reason behind their behaviour, it was clear to me that they didn’t like what was happening. In light of this, I took their behaviour as self-advocacy, stepped away from them, told them I was sorry for taking so long and that I recognized how hard it must be to be standing up for a long period of time. After that, the behaviour stopped and a few seconds later, this person indicated that they were ready to get dressed, with me holding on to them.
Here’s the choice I didn’t make – I didn’t choose to continue to force this person to get dressed so that their behaviour was “not rewarded” – because their behaviour was self-advocacy. Can we always as caregivers give the space and time to wait until someone is ready to be dressed? Of course not – in situations where there is danger for example, I would have had to just continue to get this person dressed (or covered) regardless of if they were ready. Of course in that situation I would explain this to the person in question, and not shame them for how they are advocating. But in the instances where I can respect the self-advocacy of “no”, I choose to do so. Same if a person points, nods, or cries for an item. Rather than withholding the item and forcing them to “say the proper word”, I would give it to them, as they are advocating for what they want.
It’s not a matter of if someone is able to self advocate or not. It’s a matter of whose self-advocacy gets respected.