When you find out you’re pregnant, it’s supposed to be one of the happiest moments of your life. You dream about your little boy, wondering what color eyes and hair he will have.
You look forward to his first smiles and cuddles, and the first time he says “Mummy.” And later on, when these longed-for moments don’t happen, you wonder why this is.
You wonder why your boy has stopped saying the few words he’s learned, why he refuses to make eye contact, and gives no response when you call his name. You wonder why he doesn’t seem to play with his toys like other children do. You ask yourself why he keeps shaking his head and spinning around in circles, and why he collapses to the floor when there’s a sudden noise. You wonder if you’re doing something wrong, or if you did something wrong while you were pregnant. You wonder if you are a bad mum.
You discuss it with your family and friends.
Then someone mentions it.
They say “autism.”
And you think Rain Man.
You remember the documentaries you’ve seen on TV about savants, those withdrawn but magnificently gifted children who can draw like Leonardo da Vinci and write music like Mozart. But then you look online, and you realize that this is not what autism is like. Not at all. Then you go and see the health visitor, hoping against hope that it is all just in your mind, it’s just a phase your child is going through, a part of growing up. But you know it isn’t.
By the time you’ve filled out all the forms, and waited weeks, months, or sometimes years to get the assessment date, you have thoughts going through your head that no one else could possibly understand unless they’ve been in the same situation. Finally, the assessment day comes. There are more forms and more questions.
Then they try and interact with your child, but he would much rather be left alone with his toy cars, spinning their little plastic wheels. Then they tell you that he is autistic.
Suddenly your child is not that little boy you thought he would be.
You realize he will never quite be that person you dreamed of.
He may never talk.
You may never actually hear him say “Mummy.”
You mourn the loss of this perfect, dream child, and wonder if the new one you’ve got in his place is going to be dependent on you for the rest of your life. You wonder how this could have happened. What could possibly have caused it?
You appreciate that no one really knows for sure, but that doesn’t stop you trying to pin the blame on something or someone. You blame yourself, of course, but you tell everyone it was probably due to your son being born premature.
Then you realize that ASD is most likely a hereditary condition.
You look at yourself again.
You look at your little boy’s father.
You think you see signs of it, but when you look around, you see signs of it in everyone.
Then comes the time when you decide to tell people. To tell your family and friends that their darling grandchild, niece, nephew or godchild, has something called ASD. You tell them this because it sounds better than saying they are “autistic.”
You tell your parents first. It’s then that you break down in tears, saying it isn’t fair and asking why this has to happen to you. When you’ve got yourself together again, you tell everyone else. You listen patiently as your friends offer their clumsy but heartfelt reassurance that everything will be all right. They’ve seen Rain Man too, and they tell you how wonderfully talented autistic people are. But as you watch see little boy child licking the radiator you don’t feel at all reassured.
You know what can happen. You’ve read about the co-morbid conditions associated with ASD. You know all about the anxiety, the learning difficulties, the sensory issues, the problems with social interaction. You know about IBS, ADHD, OCD, fragile X, bipolar disorder, epilepsy. The one thing you don’t know is how you are going cope.
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But when your little boy has a better day, and you get a rare smile, or even a hug, you remember that he is still your child, and you are still his mum, and you decide to do whatever you can for him. You become his advocate, his voice, and push for every bit of help that is available to you. You go on all the courses you can to understand as much as possible about his condition. You learn Makaton and PECS to help him communicate. You become an ASD mum.
When you see the occupational therapists, they talk about a sensory diet and you think “Do I now have to buy different food on top of everything else?” But of course, they don’t mean that. A sensory diet is a personalized activity plan to provide all the sensory input your child needs. So, you buy sensory toys and put them around the house and in the car—toys he can pull and stretch and squeeze.
But you learn that the best thing is just to watch your child and see what helps him. Because you know that what works one day, or even one moment, might not work the next. Every day is different, and once you think you’ve got the hang of it everything changes, and you feel like you are back at the beginning again. But you keep with it, as you know that the more you watch and learn about your child, the easier it will become.
You are an ASD mum and your priorities have changed. You look for small things that help in little ways, because it all adds up. Some you find online, or hear about from other parents. Some you stumble upon yourself. You use therapy putty as a sensory toy to calm and distract. You carry it around with you all the time.
It’s an essential part of your armory for long car journeys and busy restaurants. Then you make dinosaur shaped sandwiches using cookie cutters. You try and establish rigid routines for everything. On the way to the nursery you walk your child along the cycle lane lines to keep him from running into the road.
You try anything and everything to help. You use a mini battery-operated massager on his head to desensitize him before getting a haircut. You put bubble bath in his paddling pool to help him tolerate bath time, and when bath time comes you let him take his water pistols into the bath. You get squirted, but you don’t care. You buy a CD of different household noises, such as hairdryers and vacuum cleaners.
You play it quietly it in the car, steadily increasing the volume until your child gets used to the sounds. You are always talking to him, explaining where you are going and what you are doing. You show him pictures to help him understand. You do this because you understand. You understand his needs. You understand why he behaves like he does, even when he has a meltdown and lashes out at you. It is more difficult then, and sometimes you don’t react in the right way.
But you take a deep breath and start again. You get used to the things people say.
Like “He doesn’t look autistic.”
Or “That’s not being autistic, that’s just being naughty.”
And “All kids are like that.”
You sense their disapproval when you feed him ginger biscuits for lunch because it’s the only thing he will eat at that time. And when you go to an amusement park and get your priority wristband there are glares of resentment because he isn’t in a wheelchair. You want to turn to them and say, “You try standing in a queue for half an hour with my son!” Or even just a few minutes. But you let it go, because you know that raising any child, even a neurotypical one, presents its own unique challenges.
You never know, you might be lucky. You might have the support of a close knit, loving and understanding family. You might even get your child diagnosed early enough to make a big difference. You might find an amazing nursery. They might make extra provisions just for your child. They might install a sensory area and send their staff to take courses for Makaton and PECS. They might help with your child’s Education Health and Care Plan, and offer advice on whether he should attend a mainstream or specialist primary school.
Your child might come on leaps and bounds. He’s might now say “Mummy.” You might be lucky, like me, but you might not. You might feel alone. You might not know where to turn. I do know what that is like.
I have four children and three of them are “on the spectrum.” My eldest daughter has ADHD. My youngest daughter has Asperger’s, and my three-year-old boy has ASD, along with a sensory processing disorder and speech delay.
I know that bedtime is a battle that can take two to three hours every night. I know what it is like to drop into bed exhausted, drained physically and mentally, knowing that you’ve got to get up the next day and do it all over again. I know what it is like to take each day as it comes, one at a time.
I’ve experienced all the confusion, fear and rage at first hand. I know what it is like to feel ignored. I had to fight tooth and nail to get my eldest daughter diagnosed, and had to write to my local MP to get her reassessed.
Knowing from experience that support for parents is limited, I have started a group on Facebook for mums and dads with SEN children. I also run an Instagram page to share my experiences, and any tips I have learnt along the way.
The biggest tip I can give anyone would be to love your child’s autism as much as you love your child, because autism it is not an illness or a disease. It is as much a part of your child as the color of his/her eyes and hair. And because it is part of your child, it is a part of you too.
This article was featured in Issue 99 – Navigating Relationships With Autism