I seem to be getting my knickers in a knot over something. And it’s a strange something to me as I don’t usually get wound up by terminology; I usually just think, “oh ok, you say that. I say this. We mean the same thing. That’s cool.” But something really bothers me about referring to people with autism as ‘high functioning’ or ‘low functioning’. But it’s not for the reason you might think (well, not completely).
Wee Man is, I guess, classed as a ‘high functioning’ person with autism. I’ve never actually been given this exact specification of his diagnosis (which suited me quite fine thank you very much) but since he can talk and toilet himself (mostly) and feed himself (when he can eat), I guess that’s what he is. But, I actually think that’s quite a dangerous way to define how his autism affects him. Because there are many areas that he is very, and I’m hating using this term (which is one of the very reasons I don’t think it is a useful classification), ‘low functioning’. And there are times that he is very ‘low functioning’ in areas that on some days he might be otherwise ‘high functioning’. I’ve said before he is mercurial. Well so is his autism. It never goes away, that’s for sure. But some days he is more able than others.
We don’t ask non autistic people (or ‘neuro typical’ people as they are often referred to as in order to avoid the term ‘normal’ – I tell you, it’s a bloody minefield of potential terminology faux pas out there!!) whether they’re high or low functioning. But if we were to then I’m pretty sure that they would say, “it depends”. I know that, for me for example, if I’ve had very little sleep and a few glasses of wine the night before, then it’s fairly likely that I will be pretty ‘low functioning’ the next day. Give me a good night’s sleep and a gallon of coffee, then I’m on FIRE (very, very high functioning). It is not always consistent.
The danger with labelling Wee Man as ‘high functioning’ is that people often believe that he is more capable than he actually is. He has a lot of language, and he can use it. But he cannot process a lot of what is coming back at him, and he also doesn’t understand a fair bit of what he actually says. I’m his Mum, I know this and I behave accordingly. To a stranger or someone ‘assessing’ him (for half an hour in a doctors office) they see an articulate, chatty, interested little boy, which of course he is. But they don’t see the daily struggles he has trying to communicate what he needs. They don’t see the terrible sensory issues that make him beyond hyperactive. And they don’t see the anxiety that just living in this world causes him. He has an absolutely fabulous disguise on at times*…
So if you’re keen to enquire about the severity of a person’s autism, I think a far more meaningful answer could be gleaned from asking, “How does Wee Man’s autism affect him?” Or “How affected by his autism is he?” Or even, if you wanted to make an observation , something like “He seems quite able, is he like this all the time?” works better for me. I know I’m not alone in this and many other autism parents feel the same. The general diagnosis given is now just Autistic Spectrum Disorder, which encompasses all the previously separate diagnoses (Aspergers, Classical Autism, Pervasive Developmental Disorder – Not Otherwise Specified, etc). There are arguments as to whether this makes the diagnosis more confusing as the ‘place on the spectrum’ is not pinpointed. But, that’s where you have to look at the individual person, because every person with autism is different and affected by their autism in different ways and by different stimuli…
So it’s not so much that I am offended by using the terms ‘high functioning’ or ‘low functioning’; well, maybe I am a little, but it is more that I don’t think they are accurate for all people with autism, at all times. It all depends.
Wee Man is Wee Man. He has autism. He has good days. And he has bad days. And that’s all.
*this is very typical of a child diagnosed with Pathological Demand Avoidance (PDA) – they appear very able verbally, but still suffer the same communication impairments that come with autism.