Tuesday, 17 April 2012

My Life With Autism

Last July, we published blogs featuring autobiographical accounts sent to us by supporters who very kindly agreed to share their experiences.

As part of Autism Awareness Month we are continuing this series of blogs - below is Debbie's powerful and moving account of her experience as a parent: 

"The A-Word

I never thought I'd be sitting here on a Saturday night, in 2012, writing a wee story about autism.

Lets go back 10 years: It's spring 2002 and I am pregnant with my second child. My daughter, Beth, is 15 months old and has recently had her first MMR jab. That I guess is when the word autism dawned on my consciousness for the first time. I've agonised over this vaccination, read stuff, not really understood the science. I've gone ahead with it, kept a very close eye on her, panicked when her behaviour seemed to take a nose-dive in the days following the injection. But Beth's fine – she's a bright, happy communicative wee girl. I needn't have worried. So autism can disappear from my mind again.

Now it's autumn of 2003: My youngest child, Matthew, is 15 months old. It's time for his MMR. The A-word may flicker through my mind briefly – I don't remember. Beth was fine, Matthew will be fine too. But Matthew has always been very different from his sister. I have felt a little uneasy about him since he was around 6 months. He's too quiet, he's undemanding and appears to have no desire to communicate. He is a bad sleeper. He can become distraught when taken to strange places. But boys are slower than girls. Beth was a quick developer and I'm expecting too much of Matthew. So my health visitor tells me and so I convince myself, every time I voice my concerns.

Summer 2004: Matthew has his 2 year check. I go to the appointment ready to insist that there is a problem. I don't need to, as the health visitor can see it for herself. I daren't ask what could be wrong – I can't make myself think about it. My head is cotton wool, my stomach is full of rocks.

So we take Matthew to see the GP in order for a referral to be made. I tentatively ask what could be the problem and that is when the word autism comes into my life again. For good. My head is spinning – the next few weeks and months are a blur of denial, panic, the word autism running through my head. In those days hearing, seeing or thinking that word was like a stab in the heart, a clawing at my guts.

We go through the diagnosis process, support groups are suggested. But why would I go to something like that?

Denial is my main motivator for several years. We eventually receive a diagnosis when Matthew is four. At this stage he is at mainstream nursery with 1 to 1 support and also attending a special needs playgroup, we have input from speech therapy, we apply for a place at a local special school and are thinking about asking for assistance from social work.

Yes we are in the system, but largely, in my own mind, I am still going through the motions. I can say the autism word, but somewhere deep down, I don't believe it. Not really. This won't last. Meantime I can't think ahead as far as tomorrow. I don't know it, but my mental health is deteriorating. I am becoming very unwell.

Summer 2008: Matthew has completed one year at school. It is now the holidays. He is unwell and when I have to take him to the GP I become so stressed that I burst into tears. Up until now my tears have mainly been private. Daily, but unseen. The doctor tells me I must come back and see him myself. Of course I am ill. I have depression, though I hadn't been aware. I have kept it in for years. I have said the word autism, I have used it to describe Matthew, but I haven't believed it.

So I get treatment. We begin to get some help from social services. I start to feel better, gradually.

Fast forward to 2010: I am doing better. I join some groups on Facebook. I force myself along to a local support group, I speak to people. It is the best thing I have done in years. I make new friends, build up a support network of people who understand, get on with life.

So in 2012 I can say the word autism. I can write about it. I can laugh about it. I can cry about it. But not very often. And it is just a word. Six letters.

Of course these last 10 years haven't been all about me. They haven't all been about autism. Life can be hard. It can be good. It can just be. But I can say now that Matthew has autism. I won't cry, and I wont be saying one thing but really believing something else.

Acceptance has not come easily or quickly for me, but it has come."

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