Monday, 28 December 2009

Christmas Carols

I was in two minds about taking Lyla to the Christmas Carol Service at St Paul's Cathedral. I love St Pauls and find it a very beautiful and spiritual place. From an autism point of view, the sounds and sights and sheer business of the place could be too overwhelming for an autistic person like Lyla. But I like to give her a chance to experience new things and she loves singing so thought I'd give it a go. We could always leave......

As it was a children's service I wasn't too worried about her behaviour would be received. I remember somebody commenting on the fact that David Cameron included his disabled son Ivan in family occasions and took him out in public. And why on earth shouldn't he? There seems to be an unwritten law that we should keep disabled children hidden away. Why? There's something very sinister and dehumanising about this notion that disabled children are somehow shameful and I don't intend that Lyla should live her life hidden away. She has as much right to experience life as anyone else.

Other parents I know with physically disabled kids say that they find it hard that people don't acknowledge their child. I find the opposite. We tend to get loads of stares as Lyla looks 'normal' but her behaviour is way off-key. Lyla enjoyed singing the carols but didn't understand a lot of the rest of it and found it boring. So she started singing during the readings. It wasn't particularly disruptive as there was a cacophony of baby noise. Then when the priest said to pray for people we've lost she shouted out- Oh God well, we're not gonna pray for Grandma Doris cos she's dead!! We got a lot of stares, mainly from other parents. I think in fairness they were trying to figure her out. Over the course of the service, the stares went from benevolent (haven't you got a handful there?!) to curious (Isn't she eccentric?) to embarrassed (Blimey, there's something serious up with your kid- I can't look you in the eye!!!!! ) Because we don't often see autistic kids let-out, it's not something that people are familiar with, so I can kind of understand.

My hope is that with more exposure to normal situations, Lyla will eventually learn some of the social skills normal people take for granted. And other people can see that autistic people like Lyla are very much loved and valued by their families and friends.

Happy Christmas!

Friday, 18 December 2009


Just a really short post to say thankyou to all my Twitter friends and other Bloggers who read my last post on The Stress of Autism and your incredibly positive feedback. It's really moved me. I feel passionately about raising awareness of autism. And I feel one of the best ways to do this is to give people an insight into what it's like to live with autism.

So, thankyou all- you're all amazing!!


PS The picture is from an upcoming Autism Art project I'll be helping on in the New Year- watch this space!

Tuesday, 8 December 2009

The Stress of Autism

Its Official...being the parent of a child with autism is stressful. Researchers at The University of Washington have confirmed what all parents of autistic children know: it ain't easy. They struggled to explain why parents of autistic children have higher rates of stress than parents of other disabled children including those with other developmental disorders. So why might this be?

Well, since I'm going through an especially tough time at the moment with autism, I feel now is a good time to offer up my thoughts. Being a tough old boot, who hates moaning, I find it hard to admit how hard I find it. On the other hand, I'm also known for being pretty direct, so let's tell it like it is, without the sugar coating: IT'S HARD.

There, said it now!

So why is this? Why is it so hard to parent an autistic child?

Well, let me give you a glimpse into the last few days with my daughter. I came down on Sunday morning to find the living room showered in a confetti of cornflakes. Lyla was tossing them into the air, crunching them into the carpet and crawling round on hands and knees gobbling up the crushed remnants. She'd also disposed of all the milk and juice in the house down the sink (because she likes watching it pour away). So, I couldn't even have a coffee before i contemplated the devastation! Then she'd hidden a load of frozen peas under the sofa, which had started to turn. She'd then tried to climb the xmas tree, strangle herself with a curtain cord and scaled the outside of the stairs. Later she refused to put on her seatbelt in the car, screamed at full pelt for the entire journey, yanking my hair so hard that my head jerked backwards and I nearly crashed. I put her outside the car to calm down (with other kids in the car, parked in the middle of the road, hazards on). She lay on the pavement in the pouring rain screaming and kicking, nearly belting a couple of passers-by. Then, there were the usual tantrums and hitting, screaming when things weren't exactly as she wants them and the sometimes impossible task of trying to explain to her why she may need to wait for something she wants.

This is by no means a bad day, this is fairly typical. I usually expect a fair degree of violence and tantrumming. What can grind me down is the relentlessness of it. An autistic child will rarely learn from experience and will usually have the same tantrum about the same thing, day-in, day-out. I cannot see much hope of it getting any better.

Autism isn't curable. Bang your head on the hard wall of scientific fact.

This may never get better.

I will need to live a long time to care for her, she is vulnerable.

I may not live a long time as my health is not good (although I intend to be an awkward sod to the end and prove them all wrong!!).

On a daily level, autism is unpredictable, I can't plan for it: she may kick off today for and hour before school about having to have a pink toothbrush not a red one: tomorrow, it may be because she doesn't like tights.

Autism is an enigma: it is hard to understand, even for those of us who deal with it every day.

This is incredibly isolating. I have wonderful friends with autistic children and we all struggle. But I still have to operate in the real world too, even though our home life often feels like it plays itself out in some crazy parallel-universe.

Because autistic children look normal, their behaviour is often taken to be naughty. I am extremely frequently on the receiving end of filthy stares and rude comments. Luckily, I have developed an skin as thick as a scaly Iguana. But, when I'm having an off day, it can really hurt: I'm not a bad mum, she's not a bad kid, we're struggling, OK. So when my daughter is standing in a supermarket queue hitting me with the basket, swearing at me and shouting that I'm the worst mummy in the world: count your blessings that this isn't your life.

Then there's the sadness that I feel looking at my daughter who is so ethereally-beautiful and knowing how stressful and alien she finds the world.

I haven't touched on the difficulty of getting help. It is almost a full time job to educate yourself in what autism is and how you can help your child. Services are patchy at best and most of the time you get palmed-off onto overstretched charities who try their best but are totally overworked. Then there are the people who see an opportunity in marketing 'cures' to autism. It would take a lifetime to try out every (unproven) treatment on your child. But most of us are desperate enough to give it a try.

Then there's the guilt. Autism is a bottomless pit of need. You could invest your whole life in finding treatments for your child and still this wouldn't be enough. Because, you may never find a cure, you may never be able to help them.

So, a few reasons why being the parent of an autistic child is hard sometimes.

So why don't we hear much more about this from the families of autistic kids? Probably because most parents are so exhausted with their job that there is no time for campaigning. Also, disability is the last socially-permissible bastion of prejudice. It's OK to ridicule disabled people in a way it would never acceptable on the grounds of race or religion. As a society, we are narcissistically-obsessed with our children and when our children don't reflect well on us, there is a heavy price of disapproval to pay.

So, no answers then, just some thoughts.

And if you have a view on this, let me know.....let's get this out there!!!


Photograph: Barbara Hepworth 'Madonna & Child'
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