Labelling - Are functioning labels right?

 

When Z got his autism diagnosis, we were told that based on the Social Responsiveness Scale he fell into the 'Severe' range. That's quite a scary thing to be told. I was reassured at the time that this might change, he fell into this category for now but he will change as he gets older. Functioning labels normally refer to a person as being 'high/low functioning', but is it right to label individuals in such a way? 

Z's diagnosis report was a difficult read. It focuses a lot on things he can't do, ways that he differs from being neurotypical, how he struggles to interact socially, so for me, it was easy to see at the time, why that would come with a label of 'severe'. I see him daily struggle with things that most of us would take for granted - getting dressed, struggling with speech, unable to tell me if he's hurt or poorly, not always being in control of his movements or actions and so on. That said, I see others that I'd consider struggle much more than Z but in totally different ways, so who is more low or high functioning? I often look at other neurodiverse families and think how completely different our kids are. I sometimes find myself thinking 'oh I wish Z could do that' but then I remind myself that there's probably families that look at Z and think the same thing! 

So what is high and low functioning? These labels often refer to things like verbal communication, ability to perform tasks in an expected way, basically how close to being outwardly neurotypical as can be. To my understanding though that's not how the spectrum works. Some individuals might be able to communicate a million times better than Z or even me, but they might be completely overwhelmed by sensory input like being around too many people - making working in an office, pub, shop, or going to school completely unbearable. 

I don't use labels any more in regards to Z. In my eyes he is autistic and that's that. His needs are unique to anyone else's, he is neither high or low functioning, he is himself, he just needs extra support in some areas. I feel that functioning labels are purely there for a neurotypical benefit, to make it black and white on how socially responsive someone is. I'm still learning about all of this and I don't have all the answers and never will, all I can do is listen to what the autistic community say and learn from them. 

Instead of comparing Z to any other autistic person it's better to celebrate his individuality, he may have a label attached to his diagnosis that might help him get support in areas he really needs it, but everyone's experience of autism is totally unique. So really there is no label that can define him, he's just himself and I couldn't ask for better than that.  

Sarah x