My son knows that autism makes him different

My son knows that autism makes him different

My boy does not fit easily onto the spectrum that most people imagine. He speaks and so is labelled ‘high-functioning’ by most – though that is not accurate. He was diagnosed early, at just two – way before the average child with Asperger’s. He needs full-time one-to-one support at nursery and will at school. He struggles every day with severe rigidity of thought and sensory processing issues. His motor delays are significant. Stimming is like breathing to him and the times when he is still, not seeking sensory input, are rare. It is likely that he will need help and support, in one form or another, for his whole life.

And yet, sometimes, he seems to explain complex ideas as if he were an Oxford Don. Sometimes, his perception is astonishing.

 


My son is sobbing.

A few moments ago, I asked him a question. It was simple enough – the kind of question that parents ask their children every day – “What did you have for lunch?” “Where are your shoes?” “What would you like for tea?” I could ask him how a toilet flushes, or how popcorn pops, or what happens to cake mixture when you put it in the oven and he would tell me, over and over, energetically and enthusiastically. But when I ask him what he wants for tea, the tears come.

At first, I do not realise that it is the question that has disturbed him so much. I assume something else must be wrong and so I interrogate him further – “What is wrong?” “Why are you crying?” “Please tell me, bubba, please?”

But he cannot. My questions only make it worse, and so I hold him, until he is calm.

Several minutes later, when he is finally eating some spaghetti hoops (a guess but a favourite that is usually a winner), he speaks again, sorrow lingering in his voice –

“Sometimes, mummy, the words get stuck on the sticky tape in my head and I cannot make them come out.”

My stomach flips – like going over a bump in the road too quickly.

My son just explained his communication issues with absolute, perfect clarity. But he could not tell me that he wanted spaghetti hoops for tea.

The irony is remarkable – exquisite. There is an aching beauty in that moment, to hear him give voice to his struggle so flawlessly, to know he owns and understands it, and the tender age of four.

Every so often, his perception takes my breath away.

There are dozens of reports about my son that say he becomes agitated if other children get too close. But I like his explanation better:

“I am not like other children. I am powered by invisible spikes. They can hurt people sometimes, if they get too close. I cannot help it, when they hurt.”

For some, the sticky tape is stronger. For some the spikes dig deeper, stretch further.

But my boy has taught me to never assume that absence of speech equals absence of understanding, never assume that pain is aggression, that difference is deficiency.

My son is already learning that he is different.

And I am still learning, every day.

5 Comments

  1. 27th August 2017 / 7:01 pm

    Hello, Danielle,

    Thank you for this heartfelt, real-life post. I’m a pediatric occupational therapist in the U.S., and I found it encouraging today to read of the love and insight you and your son share. Bless you both in your everyday life “sticky tape” moments!

  2. 31st August 2017 / 10:13 am

    Oh wow. I so wish our girl could express herself like this; she struggles to tell me why she struggles and it makes life even more challenging for all of us! So it’s great that you can have this communication with him, although I do of course understand his difficulty with getting it out too. Oh and yes, the fewer questions the better here too… in fact the less talking the better always! :/

  3. 31st August 2017 / 11:43 am

    He sounds like my eldest son. He once spent a train journey telling me all about Chinese history. But when we arrived he could not tell me where he wanted to eat lunch. It’s always been the same and in a way you get used to it and learn to adapt to their needs. I don’t ask my son direct questions anymore. I never really understood why he couldn’t answer, I just thought he was being difficult, which is something that comes around a lot with autistic children. Your post has made me think differently. See, you can still learn after living with Autism for nearly 30 years.

  4. 12th September 2017 / 4:11 am

    I love your son’s explanation. I get the same unexpected perceptive comments from my son sometimes in calm quiet moments and they are so helpful in understanding him. He gave me a fabulous explanation of why he finds new things so hard, but at other times he struggles to tell me simple things. Making choices is tough too. We’ve found just letting him choose between two options works best, e.g. Would you like carrots or broccoli with dinner (and sometimes we still have to go with both because he can’t decide!).

    Great post, thanks x

  5. 17th September 2017 / 10:26 am

    This is a beautiful post and so eloquent- from both you and your son – in helping outsiders to understand some of how it feels to be so confused by your own emotions. You should send this to Mumsnet Blog of the Day, Huffpo Parents, Autism charities etc. I used to think that good blogs would get discovered, but I am sure you know far better than me that it’s all about self promotion.

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