There are many divides in the autism community. There are autistic adults. There are the parents of autistic children. There are those whose autism is deemed ‘high-functioning’ and those who are called ‘severe’ and ‘classic’ and ‘non-verbal’. There are those who are perfectly capable of advocating for themselves and there are those who do not have a voice – or at least not a voice in the conventional sense. There are those who fit none of those labels. There are millions of different experiences, no two exactly the same.
And sometimes, they are at odds.
It is 9 am and I am getting ready to leave to take my little boy to school. It starts as soon as I try to put his coat on, and it escalates until we reach the gates –
“I don’t want to go to school. It is not a good place.”
My heart sinks, every time – though I know it is coming.
“Sweetheart, it will be okay. It is a good place. Remember all the things you love to do at school – like your special scissors and the bubbles. Remember those.”
I know what it feels like as he approaches the door to his classroom, the way the panic rises in his throat. I know that way that room feels, like pressure all over his skin, the pressure of those eyes, the pressure of those expectations.
“It is not! I will be sad! I do not like the other boys and girls! Promise I do not have to go Mummy!”
I cannot promise that, sweet boy. I cannot.
When I leave the classroom, prising his hands from mine, taking a deep breath and ignoring his sobs, it is agony. It is hard – not just because his pain is painful, not just because I am his mother and my instinct is to rush to his cries. It is hard because I know that desire to escape, that rush of adrenaline when the pressure of functioning in the world is too much to bear. Fight or Flight.
I exist in limbo. I am the parent of an autistic child. I may be an autistic adult. I have struggled my whole life to exist in a world where I must adjust to the expectations of others. There have been times when I have stood outside doors and felt like I am drowning, when I have fled for the safety of home, of solitude – of control.
Right now, my little boy’s life is flooded, overwhelmed, by the pressures of school. He is frightened to sleep, frightened to go to his favourite places, frightened of everything that is unknown. He longs to lessen that pressure, to shut it out. I know. At school, he lashes out. He hides, like a wounded animal. Fight or Flight.
Social media can bring people together, and it can drive people apart. People have tweeted me to tell me that they are “sick” of the parents of autistic children being the voice of autism. People have commented on my posts to say that all autism parents care about is “solving their puzzle piece children” and “complaining about how hard their lives are.” My son is perfect. There is nothing to solve. Life is sometimes hard – but my children are the most joyful parts of it. I would have no other.
My purpose is to keep those I love safe and happy – the rest is just frippery. I strive to help the world understand autism, not for myself, but for my son. If I use my voice in place of his, it is only because he is not yet able to convey these truths. He may never be. But I recognise that placing his life on this page is a great responsibility. It must be done with care, with dignity, with love – if it is not to be an invasion. I am constantly aware of the line that I tread and there is a litmus test that must be done, every time, before I hit publish.
“What would my gorgeous boy feel, if he could read this, if he truly understood what I have said? How would I feel if someone I loved had written these words about me?”
So, when my referral finally comes through, after the six months of tests and assessments, I will have an answer. I will either be actually autistic – or I won’t. At the moment, I exist in a dual state, both autistic and neurotypical. Like Schrödinger’s cat, no one knows until we open the box.
Of course, in reality, I am one or the other. I always have been. Does that mean my voice will be more worthy, in nine months’ time, if it is decided that I am autistic? Does it mean that my intentions will be purer, that my message will be more helpful? There are voices that cannot be heard. There are voices that are silenced. There are voices that society will not yet listen to – and for that I am so very sorry.
But my voice stands with those voices, in harmony, not discord. I seek to share a small insight into our lives, our autism. And, though our autism may be similar, or different, to others struggling to be heard, though my voice may that of an autistic adult, or just a mother who loves her son fiercely – that glimpse is worthwhile.