You’ve probably been told your child is either “high” or “low functioning.” This was probably included in part of their diagnosis, and it probably defines what sort of accommodations people will think your child is deserving of.
I’m here to tell you that your child is not high or low functioning. Your child doesn’t have “mild” or “severe” autism. Your child is not on “one end of the spectrum.” Your child is simply autistic.
‘But Arion! My child can or can’t do X Y and Z that high/low functioning people can/can’t do! That makes my child different from them.’
The fact that one autistic child is different from another doesn’t mean that one is more or less autistic than another, nor does the fact that your child can’t pretend to be allistic as well as another. Autism isn’t a spectrum because there are better or worse ways to be autistic, it’s a spectrum because there are many different autistic traits, and each person has a different combination of them. Think of it like a pick-n-mix: each sweet is an autistic trait, and we all have different bags of sweets. They aren’t the same, but none of them is more or less a bag of sweets than anyone else’s.
The labels simply don’t work. I’ll explain why by example. Say we have two autistic children, let’s call them Alice and David, and let’s say they’re about 10 years old, the sort of age at which neurotypical children begin to gain a new level of independence from us as primary care givers.
- David cannot brush his own teeth
- David needs help feeding himself
- David needs reminding that he needs to go to the bathroom, as he cannot self-monitor his biological needs
- David doesn’t speak
- David needs to keep earphones in or ear defenders on whenever he is out of the house, otherwise he’ll melt down from the noise
- David cannot hold eye contact
- David does not do hugs or hold hands
- David won’t follow most orders, such as “pick up your litter”
- David stims every day and will not hold his hands still
You’d call David low-functioning, correct?
- Alice has many friends who she contacts most days
- Alice can communicate using thousands of different words in sign language
- Alice can cook herself 5 different meals
- Alice completes a few chores each day, including tidying her room, the washing up, and feeding her dog
- Alice always does her homework
- Alice can get a bus on her own
- Alice is in mainstream school in a normal classroom with normal teachers
Alice is high functioning, yes?
What if I told you that both Alice and David are my brother, who I take care of, Al? Al could be defined as either high or low functioning, depending on what is on your checklist. He can’t tidy up an unexpected mess, but he can feed the dogs every day at 6:30 pm, make his bed every day, and do the washing every Monday night. He can’t use vocal words, but he does know thousands of words, and he can use them, he just talks with his hands instead. He can’t handle how overstimulating the world is, but he’s perfectly capable of navigating it if I give him the tools he needs.
‘But my child can’t do any of those things! They’re just low functioning!’
Have you taught them how? Your child is disabled, I am disabled, Al is disabled. None of us can do things in the same way you, an allistic person, can. Are you expecting your child to do the same things as an allistic child?
Say your child has issues knowing when they need to use the bathroom, you’d say this is a significant thing that means they don’t “function”. Al struggles with this, because he doesn’t recognise the feeling of needing to go, and this can lead to accidents that are unpleasant for me to deal with and embarrassing for him. Al has an app on his phone which buzzes every hour and tells him to go to the bathroom, for when he’s at home, because he always keeps his phone on him. Obviously, not all children are old enough for that, so you can perform this function for them, until they’re old enough to take over. Solution found. It’s not the normal way of doing things, but is it not functioning nonetheless?
Whatever the behaviour, there is a work-around.
Work-arounds are no less functioning than neurotypical ways of doing things.