I’ve been involved in a lot of discussion lately around the “high” and “low” functioning labels that surround an autism diagnosis. Although I do see the use of labels in generalised diagnoses such as autism, adhd and sensory processing disorder (see blog on why labels absolutely do matter), I have really never understood the whole high and low functioning side of things.

In the beginning I was led to believe by articles and professionals that higher functioning individuals were able to survive mainstream school (“survive” being the word there), communicate socially (but viewed as “awkward”) and have a higher than average intelligence. Lower functioning individuals were seen as those who were non verbal, had additional learning difficulties and were destined to spend their future lives in a care home. So the divide was pretty clear.

Over the last year I have learned just how dangerous these labels can be. Yet at the same time how we as neurotypical parents are simply desperate to know how our child is viewed in this way, because maybe (just maybe) it will give us a clue as to how our child will function in the future. Putting it bluntly, will they live independently or not?

When we had our first meeting with the health visitor and the referral fiasco began to get assessments and a diagnosis, I asked her whether she thought kiddo was high or low functioning. She immediately replied “oh definitely high functioning. He’s very intelligent, just look at how he’s operating the iPad”. I took this observation and banked it in the back of my mind. I wasn’t convinced. After all he barely spoke, weren’t high functioning children supposed to have a vocabulary better than the Oxford dictionary?

Months later we were in amongst the Autism diagnosis assessment. I asked the assessor, “do you think he is high or low functioning?”. She replied, “low functioning, his social communication skills are low”. When I challenged her about his intelligence she said, “oh yes there is definitely a high intelligence in there but we don’t measure functioning based on that”. Hhhmmm. Now I was stumped.

I stayed confused about kiddo’s “function” level for some time. How would I describe him to other people? How would I present him to the county board to be considered for a SEN school? Was he high or low functioning? Help!

A year on and I am so much wiser. Truth is kiddo is neither. He does not fit into a tick box on a government form. He is individual. He is complex. And he is actually most of the things the professionals described. But I refuse to view him as high or low functioning.

My son has verbal communication challenges. No doubt. But his intelligence level for using electronic devices is impressive. He learns about numbers and letters with ease. He is teaching himself to spell. But take a factual subject such as history and try to verbally teach, and he cannot comprehend the language being thrown at him. Give him verbal, or non verbal, instructions and he will struggle to follow them. Place him in a busy environment without any support such as his headphones or electronic device and he struggles to cope. Give him those devices and he might be able to manage it. Sometimes it depends on how he feels that day. Is he tired?

The point is that autism is a spectrum, and kiddo moves along it depending on the skill we may be examining at that point. He is unique. He is like no other autistic person. In the same way I am like no other neurotypical person. I will not have his future predicted by two categories, neither of which he fits into. I was talking to some autistic people recently and they explained that their challenges changed with age and environment. It’s a constantly moving target that the neurotypical world seem to have a desire to pin down, simply because it’s easier to analyse between two tick boxes on a government form. Or maybe even predict the future.

I no longer tick boxes on forms. I attach extra pages and write about my beautiful child in all his unique glory. People should not be made to fit in. They should be allowed to shine, they should be allowed to flourish and regress and move along our human made scales as and when they need to.

And that my friends, is why autism doesn’t simply fit into a tick box.

Thanks for reading,

Danielle