How do you begin to tell a child they have Autism?

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It’s a big question and one that will bring with it a huge debate.  I believe that there really isn’t a cohesive answer to this question, it’s like asking how long is a piece of string.  After all, there is no set time or a meticulous plan to follow, predetermined in a parenting manual before we start having children.  It simply may just be when the time feels right.

It is from this viewpoint that I approached the subject with my daughter.  She has asked many questions for so long that it was a relief to explain something to her.   These are a few questions that have stuck in my mind:

Why am I like this?  

Why do I hurt people?  

Why was I born beautiful and then I ‘growed’ up ugly?  

What will happen to me when I get older?  

What will happen when I’m a mummy?    

Will the police come and throw me in the jail with all the burglars?

I can remember a key moment when she identified in her self that she looked at things differently.

It was a day I when I took the children to the Science Museum – something she had been extremely excited about doing.  Yet, the day arrived and she started to get twitchy.  The entire train journey she was quiet and on edge.  We began looking around the museum and she started to snarl at people near her, then proceed to glare at them angrily.   After a while I decided to boycott the museum and get a quiet coffee somewhere – I was aware she was getting distressed.

As we were queuing she was still moaning about why other people had to be in front of her.  A man must have felt sorry for us and gave us his place, he said it was too long waiting with small children.  I was very thankful to the man and my daughter then proceeded to tell him her name and the whole of our family, where she had been, what she was doing next.  She acted like a mini adult and asked him would he like our place back in front of the queue.  She whispered to me that he was kind.  He smiled and told her what a charming young lady she was.

We found a quiet spot and she asked me, Mummy, when I grow up will I not be mean to the people anymore?  Why don’t I like people?”

At the time she was obsessed that faces needed to be circular, not oval.  White, not black.  Straight hair, not curly.  Brown eyes, not blue (I was relieved by the last one, I was starting to worry Hitler may have been reincarnated!).  Able bodied, not visually disabled.  I’m aware as I’m writing this I couldn’t get any further away from being PC.  I hate to think what response must happen in her brain when she can’t fathom these differences.

Why did she not like people?  I was lost for words.  I cuddled her and offered her lots of reassurance that she would learn to cope around people as she got older.  That people were not mean.  And more importantly, that if we all look different it makes the world a better place – like all the colours make a beautiful rainbow.  It would be boring if we all looked the same and we wouldn’t be able to tell people apart.

It was the best I could offer her.  But I knew from that moment on that I needed to find a way to explain her different way of thinking.

Things have moved on since that day.  She is a year older (nearly six) and we have a diagnosis (of sorts!).  She is accepting and changing daily and to me she feels ready to gain some self-awareness.  I needed to answer the plague of questions that had been building up over time.

And then it happened.

One day my daughter picked up her toothbrush from the holder in the bathroom and asked me did I know how she knew it was hers.  I answered with the most obvious answer – hers is always the purple one.  She twisted it around and showed me the back of the head in comparison to the rest of the toothbrushes.  Hers was missing a tiny pattern that all of the rest of the toothbrushes had, but was barely visible to the eye.  I told her that her ability to notice the smallest details made her a genius and smothered her with a cuddle.

“See darling, you noticed that tiny, tiny detail on the toothbrush that nobody else noticed.  That is because your brain is clever.”  She beamed.  I’m walking on a tightrope here, but I’ve gone too far – there’s no way back without falling off.

“That’s because you have Autism.  It helps your brain notice things many of us don’t.  But sometimes it’s the reason you get angry too.”  She asked if she could look at her body book before bed and she went flying off.  She wanted to show me a picture of the brain and to teach me about it.  I allowed her to ‘steal’ the idea and pretend it was her own – if she had ownership of the concept then she was more likely to be open to learn.

I let the idea fester without mentioning it further – with a PDA child conversations have to be on their terms.  Then a few nights later she said the words, “Do Santa know I have Autism?”  Bingo, firstly she had remembered the word (something her auditory processing skills usually don’t allow), but secondly she was willing to re-open the subject.  I cuddled her and congratulated her on how clever she was that she had remembered the word, and yes, Santa would know she had Autism.  She smiled and I felt happy she had accepted her diagnosis at that point.  It didn’t bring about shame or fear, but a sense of her own identity.

For the first few weeks it was only mentioned if she brought it up first.  “Does Grandad know I have Autism?  Does the teacher that follows me know I have Autism?”  After some gentle reflecting, she began to tell people she trusted.  At school, she told the headmistress she had Autism, then her 1:1 and then bravely to some of her peers.  Slowly and steadily she is beginning to accept that her brain works differently.

This is still early days and we are only at the start of our journey.  It’s not a magic wand that I often wish I had.  We still have so many bad incidents and violent outbursts, some of which she screams at herself that she hates her brain, that she wants to get rid of it.  I can’t begin to understand what that must feel like.  What I can do is find creative ways to help her see some of the positives and that ultimately Autism will be intrinsically entwined into her core.  Invariably, it might often feel for the worse.  But sometimes with acceptance and knowledge it could be for the better.

I wonder what it must feel like as an adult who was robbed of this opportunity to understand their true self?

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