You must be really high functioning

"You must be really high functioning!" and "I would never have guessed!" These are very common responses to me disclosing that I am on the autism spectrum. Because I am married, have children, run a  household, drive a car, buy groceries, read books, am intelligent and verbal - the autism must be a very small part of me, almost negligible. I realise that people sometimes see the above remarks as compliments. And I look 'normal' to them.

But I really do wish people would stop thinking in terms of high and low functioning. The more 'high functioning' people think you are, the less help you can expect, and the higher the possibility that your specific struggles will be seen as character deficits instead of part of your autism.

I must be highly functioning because I am fully verbal. Then why can I not share a fraction of the thoughts I have? I am constantly thinking, analysing, developing theories, studying, learning in my head. And when you ask me what I am thinking, I will most of the time lose my words. I have to put in a lot of effort sometimes to share my thoughts, and the words that I manage are so inadequate that it does not feel worth all the effort. Writing is easier than speaking, but even then it can take days to put the words on paper, and still they don't reflect the complexity and beauty of the thoughts I live with.

I must be high functioning because I can go into shops and buy what I and my family need. Then why do I only feel comfortable going into shops I know well? Why do I often cry and feel lost in shops where the layout is confusing and the procedures hard to understand? Why do the music and the voices of some people in the shops make me leave without buying anything? Why do I fear to the point of feeling sick going into shops where I have no idea what to expect?

I must be high functioning because I can run a household. Then why is my house always in a state of near chaos? Why are there bills not being paid on time? Why does it frustrate me that my family are not willing to eat the same dish for three weeks in a row? Why are there so many things I know I should do, but find so hard? Why is it so hard to start things, so hard to finish them, so hard to be patient when I am interrupted when I have managed to start something?

I must be high functioning because I can make small talk and have conversations. So why does social contact tire me out so much? Why do I still have to concentrate on tone of voice, body language, appropriate responses? Why do I try so hard to be accommodating, respectful and mindful of others, and still manage to offend, come over as disrespectful and difficult?

And why are people unaware of my struggles and frustration and exhaustion? It used to be that I cared about what others thought of me - I had to care to protect myself against ridicule and isolation and dislike. I have stopped caring so much. I accept and like myself now and the opinions of others cannot shake my belief in myself so violently any more. These days I keep my otherness hidden because I do not have the energy and motivation to explain. Because I don't trust the ability of others to understand. And because I don't want to place a burden on my family. I will keep on counting my many blessings and try to find ways to manage my frustration and tiredness.

So before people make remarks about functioning levels, it would be a good idea to stop for a moment and realise that they don't really know what goes on in others' lives, how they function and what their challenges are.