About six months ago, L started to notice that her twin brother J was “different”. She asked why he sometimes ignored her when she was talking to him. She asked why he always needed to repeat his daily scripts as we passed certain points when we were out in the car. She asked why he clamped his hands over his ears and shouted during tannoy announcements in supermarkets. She asked why it would sometimes take J a few minutes to answer a simple question; why he could not cope with making choices; why he would lay in bed screaming in the early hours of the morning; why he was obsessed with meerkats. She asked a lot.
At the same time J listened to L’s questions. Her enquiries meant that his difference, his “strangeness” was being pointed out to him. And whilst he made no comment I could see he was absorbing L’s questions. I saw the anxiety and confusion flicker across his face as L reeled off the ways in which he failed to behave like “normal” preschoolers. And I knew that my reply: “Because that’s just what J likes to do!” wouldn’t cut it for long.
So that’s when I first considered the idea of introducing the term “autism” to my 3-year-olds.
I initially broached the subject by gently introducing the concept of “disabilty” to them. L had only recently noticed that one of the presenters on CBeebies is missing the lower half of one arm. We had discussed some of the things she might find difficult and how others might be able to help, both practically (offering to tie her shoelaces) and emotionally (not saying mean things to her). And suddenly L’s world changed. Difference was all around her. She was, inevitably, full of questions. Why did that lady need to sit in a chair with wheels? Why did that man sound funny when he talked? Why did that big boy keep hitting himself on the head? Why did those people need sticks to walk? She very quickly grasped the idea that sometimes there will be part of someone’s body that doesn’t quite work the way it should, or work like everyone else’s. She understood that it might make life a little harder for that person, and that we should all do what we can to be kind and helpful to each other.
We talked about the infusions I do each week and she grew to understand that part of Mummy’s body doesn’t work like everyone else’s either – but that you can’t see it. L learned what an immune system is, and shouted angrily at her “fighters” to “make those germs scram” when she caught a cold. And finally we talked about J. I explained that whilst J’s body works fine (I’ll save the explanation of hypermobility for another day!), he sometimes thinks and feels differently to others. We revisted all of L’s “whys” and she started to put the puzzle together. J shouts in the supermarket because he hears everything really loudly and it hurts his ears. J sometimes ignores her because he can only think about one thing at a time. J screams in his bed because his brain isn’t very good at going to sleep. And gradually I introduced the word “autism”. At first it was hard to explain such an intangible condition. But then L would start to ask “Did J do xxx because he is autism?” (I still can’t get her to say he has autism!). Sometimes I would reply “Yes, I think J probably did xxx because he has got autism”. And sometimes I would reply “No, I think J did xxx just because that is what J likes to do”. Again, J listened and absorbed. And as autism by its very nature likes facts and answers, rather than intangible questions, J seemed at peace with the answers that were emerging.
And of course, we talked again and again about how much we love J, and how the things that make him different also make him very, very special. I knew I had overdone the “J’s autism makes him special” when L tearfully insisted that she is “a little bit autism” too. I didn’t protest too hard. We’re probably all a little bit autism after all.
And as time has gone on, “autism” has become just another word in J and L’s ever-increasing and hugely impressive vocabularies. It is simply another descriptive term. L has got blue eyes and curly hair, is very little, and loves to sing and make pictures. J has a wicked laugh and autism, is great at reading, and loves shapes and tickles. Sometimes J will refer to his autism and a little more often L does. Occasionally I have found it very useful in explaining J’s own behaviour to him, when he seems confused by his physical and emotional responses to different stimuli. But mostly no-one in our house mentions autism because no-one needs to.
I did not take the decision lightly to tell my children at such a young age that J has autism. After I had done it I worried constantly about whether it had been the right thing to do. Their response reassured me to a certain degree. But it was a conversation we had today that finally left me in no doubt that I had done the right thing.
A little boy, B, has recently joined J and L’s class in nursery. B has autism. I know very little about him, but it is clear that he is not at the same point of the spectrum as J. He is non-verbal and it seems that his autism is notably more severe than J’s. In the car on the way home from nursery today J suddenly said “Let’s talk about B!” I asked what he wanted to tell me about B and he said B had kept opening the classroom door today. I remarked that this was funny – B likes opening doors and J likes closing them. J said “Yes, B is like me!” A split second later came L’s inevitable question: “Is B autism?” “Yes” I replied, “I believe B has got autism”. “Oh!” said L. “That’s why he doesn’t talk!” Bearing in mind J’s verbal communication skills are excellent I was surprised she had made this connection. L went on to explain all the autistic traits B displays during an afternoon at nursery. I have to say her diagnostic observations are impressive.
Then L told me B had pinched her today. She said it hurt. I thought about my response before saying that I didn’t think B meant to hurt her or be naughty, but he still needed to learn that he mustn’t pinch people so L must tell the teacher if it happens again. Then L said something that brought tears to my eyes. I have reproduced her words as faithfully as my memory allows:
“Poor B” she said. “Maybe he wanted to be my friend but didn’t know how to tell me. I don’t mind that he pinched me. He probably knew that I would be kind to him because I know all about autism. If he does it again I will say ‘No B, pinching makes me sad. Do you want to play instead?’ Do you think that will make him happy Mummy? It must be very upsetting to not be able to talk or to tell people what you want. Maybe we should have a play date with him”.
Then J, who had been quiet for some time, added: “B has got autism like me. I will be his friend”.
If my children go on to climb Everest and win Nobel prizes, I can’t imagine ever being prouder of them than I was in that moment. At four years old they have openly understood and accepted difference and, through their own volition, considered ways to embrace it. They have shown empathy, compassion and kindness. The thought that B may grow up remembering the two children who offered to be his friend rather than shying away from him fills me with joy.
And I have learned an important lesson today. I have been so busy trying to change the world so that everyone is loving and accepting and understanding towards J, I forgot that he has it in him to be all of that for another. A year ago I could never have imagined being grateful for J’s autism. Now I am just starting to realise how many gifts it has given us. And the greatest of all is that it has made my children into the kind of people who wish to befriend a boy who might otherwise remain friendless. What parent could ever ask for more?
Through Accepting Limits 