One night, when putting Tom to bed, I told him that he was the best boy in the world and if I could have picked any baby from all the millions and billions in the world, I’d definitely have picked him. He replied to say, ‘But Mommy! It doesn’t work like that! The babies choose the family! When I was in the other world, I had goggles on and I looked down at all the families and I looked at their names and surnames. When I saw you, my goggles froze. In the other world there is a portal shop and I went in to the shop and saw a red, blue and yellow portal with your name on it. I wanted it but another baby had it and tried it but it didn’t work (we had a miscarriage before Tom) so that baby went to a different family and I got the portal. The only thing I wasn’t too keen on was the noise that the portal made on the way to the tummy. It made a ‘whooshing’ sound but it was sort of fun because it was like being on a slide. And then I was in the tummy.’ My husband and I could not get over this. What IF he’d actually remembered life before birth? It was a lovely thought, mainly because it sounded like such a happy place.
Tom was just three when he was diagnosed with a high-functioning Autistic Spectrum Disorder, also known as ‘Asperger Syndrome’. Aspergers is characterized by difficulties in social interaction and nonverbal communication, alongside restricted and repetitive patterns of behavior and interests. This is Tom to a tee. He is now seven and struggles every day with huge anxieties around ‘new’ people (people Tom has either never met before or people that he has met but make him feel anxious) and any changes to his routine.
I was relieved when we got our diagnosis. I’d spent three years feeling like something wasn’t quite right with Tom but nobody else seemed to see it. Well-meaning friends and relatives reassured me that Tom would catch-up with his peers or that he was just ‘going through a stage’. My mom, however, told me to trust my instincts and to go back to the doctor until I felt I had some answers.
Tom was a late smiler, and all of his developmental stages were delayed too. He never seemed happy and every day was a battle for him. I tried not to compare Tom to other children but it was hard when, at play groups, the children were laughing and playing and yet my child was crying, distressed and constantly unsettled. From the moment he woke up until the time he closed his eyes at the end of the day, Tom was always pretending to be something or someone else. He was never TOM. One day he’d be a puppy all day and the next he’d be a fireman. He seemed to get some confidence from hiding behind these personas, as if he didn’t trust or believe in his own.
The diagnosis opened doors for us in terms of getting help for Tom and the right kind of support, and he has absolutely blossomed since then. Progress has been slow and difficult at times but Tom has just turned seven, and we now have a happy, confident, sensitive little boy with a wicked sense of humor and an unquenchable thirst for facts.
Tom is very self-aware. I told him about his ASD when we were in the car, alone, one day. The time seemed right. I felt that knowing and understanding would help Tom, and it really has. He frequently surprises us with his understanding of himself and the world around him. He always makes us laugh with his quirky observations. I try to record the things he says because I think they’re clever or funny or just worth remembering. Here are some of my favorites:
One day Tom said ‘When I close my eyes, I see loads of different colors. It’s like a toolbox for my creativity’. I adored this because it’s so true but whoever stops to think that?!
When Tom was just four, we were driving down our road and passed a little girl who looked like our neighbor. When Tom realized it wasn’t our neighbor, he got upset. When I asked him why he was upset, he said, ‘When I see a new person, I get really stressed. If the person says ‘hello’ to me, the brain is so worried that it doesn’t send the message to the body to say ‘hello’ back. I loved this. It perfectly demonstrated why Tom feels he can’t speak when someone he doesn’t know speaks to him. It showed such an insight and understanding of his own condition and limitations.
At bedtime one night, I told Tom to close his eyes and imagine he was on a beach with Mommy, Daddy, and our dog, Pippin. I told him to imagine the sand was white and the sea was blue. The sun was shining on his skin. We were lying in a hammock. Tom said, ‘Wait! What material is the hammock made from? Is it leopard skin? If it’s leopard skin I’m not getting in to it. I do NOT lie in hammocks made from endangered animals.’ This is so Tom. He loves animals and is obsessed with global warming and the safety of our planet. Even when imagining a far away land, he still manages to worry and be very clear on his ethics.
My husband brought Tom a present home from the office one night which Tom described as, ‘The BEST present EVER’, having ‘the most interesting parts in the Universe’, and ‘absolutely FULL of tech’. It was a lever arch file. It showed so beautifully how he finds beauty and interest in the most simple of things.
My friend asked me once what I’d do if they discovered a cure for autism. I’d cure it for Tom because there’s no doubt it would make life easier and less stressful for him, but for us he is just perfect the way he is. We love his quirks, his innocence and his unquenchable fascination for facts. He makes us laugh every day, and little things are huge achievements for us; Tom has only just learnt to jump, and sing. We never take anything for granted.