Schrödinger’s Autism

Schrödinger’s Autism

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.

 

 

 


 

8 Comments

  1. 22nd November 2017 / 2:29 pm

    Our grandson had similar problems with mainstream school. Fortunately (?) the school decided it could not cope with him and the LEA found him a place in a private (but it only takes children from local LEAs) school for children with challenging behaviour – not by any means all autism-related though it is the majority cause. Anyway, after a term and a half he adores school, gets himself ready in the morning, has caught up with the national curriculum, chats happily about what he has done during the day – etc. A different child! Of course, there are still problems; there always will be. But the school is teaching him coping strategies and doing a wonderful job. I do hope your boy finds somewhere – or maybe just someone in the form of the right teacher – that will make a difference for him. And for you, of course. My daughter is no longer as stressed which is another bonus!

  2. Alaina
    22nd November 2017 / 8:43 pm

    The worry about writing about my Autistic children’s experiences resonates with me. I don’t think I am autistic myself, but I am steeped in this world with them. I read many blogs by autistic adults in order to get a sense of how I can support autistic people as an ally, but I am always aware that I will never fully understand. But then can any of us ever fully understand the experience of another human?
    I can remember that no-man’s-land of either/or before my boys were diagnosed. I cannot know how you feel about this for yourself, but I can imagine it must be confusing and perhaps a little threatening. Please be assured that whichever way it turns out, you are still the best advocate your children will ever have. Not because you know autism, but because you know them. Your voice is worthy because it is strengthening your son’s (and your daughter’s) voice.
    I read a wonderful piece from Uncommon Sense this morning that I am going to paraphrase… “You can’t be his voice, but you can be his microphone.”

  3. Mary
    26th November 2017 / 5:16 pm

    There is another possible outcome apart from “autistic” or “not autistic” and it can be the most frustrating outcome of all, particularly if you are not expecting it.
    An adult who has developed coping strategies to be able to manage in a neurotypical world may be assessed as having autistic traits, but not quite enough difficulties to reach the cut off point to receive a formal diagnosis. But if you were autistic as a child, you are still autistic even if you can hide it well enough not to qualify for the label now.
    As an autistic parent of autistic kids, your writing resonates with me.

    • harmony
      27th November 2017 / 7:18 am

      Beautifully said. I can relate in so many ways 💙

  4. 28th November 2017 / 8:36 pm

    My wish is that everyone could feel happy, and valued, and like they have a place in society worth having. I hope you get the answer you want, but that you will also remember that it is very difficult to speak for a huge group of people… you are you, your son has his own qualities and what you do really well is tell your story. Hopefully that can continue, as I’m sure you are helping many with your words x

  5. 28th November 2017 / 9:49 pm

    Very well said. I wouldn’t worry about the haters and trolls. I see nothing beautiful about a severely autistic non-verbal adult who can’t go to the bathroom and is forced to wear a diaper all day and sit and rock and stim in a corner day after day after dogged day. Those who criticize should be thankful that they have the ability to express themselves well enough to be critical. But Autism is often narrow-minded and can’t see beyond itself. If someone who has autism functions highly enough to be hateful then perhaps there is someone in their past who worked hard with them to get them where they are. Or not. Bottom line, we are all human and we all are in need of compassion. I am the mother of twins with autism (adopted) but I’m convinced my father is on the spectrum. That means I probably am, too, although I tend to think I’m more of an introvert and compulsive soul than autistic. Raising children with autism isn’t a picnic. Walk a mile in a parents shoes and most will soon learn they want their own shoes back. Autism rocked our world and changed it and flipped it upside down and inside out. It was so difficult when the twins were small. And now they are grown and those boys who couldn’t speak or control their rage hold down part-time jobs and are a delight to be around. They’ve gone from banging their heads on the floor to speaking and texting. How miraculous. And how grateful I am! Hang in there! Your blog is magnificent. Just like you.

  6. 6th December 2017 / 3:16 pm

    It’s such a shame that there is so much bitterness at times in the autism community, how one voice can be valued higher than another. I think there is so much we can all learn from eachother, people on the spectrum, parents, carers, professionals, if only we could listen with an open non-judgmental mind.
    Keep being you, keep doing all that you do. I’m sorry school is so difficult at the moment, I hope it gets easier for him soon x

  7. 8th December 2017 / 10:55 am

    A lovely, needed post. As others have said, one voice should not be more worthy or more valued than another. The key, on both sides, is conversation and listening. Sadly, despite its potential, the internet does not seem to encourage either. Consequently, we must all try harder.

    I am not autistic, but I am exceptionally introverted, hard of hearing and have some sensory sensitivities, so it is not beyond my wit to empathise and understand my son.

    #SpectrumSunday

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