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Monday, 23 January 2012

The Real Truth About Autism?

I don't normally get involved in debates and rows about autism, even though two of my kids are autistic. I recently discovered Austism Daddy's blog and Facebook page, and follow them with interest as, to me, he gives one of the few honest portraits of what living with autistic children is really like. Some people may consider him to be negative, but as a parent of autistic children, I consider him to be a realist.

The reason for my following outburst (yes, this is to be an outburst) is an article in the Daily Mail:
Why can't we face the truth? Having an autistic child wrecks your life...

It was published some time ago but it has only just resurfaced on the likes of Facebook and it's the first time I've seen it, otherwise I'd have stuck my oar in ages ago. I have, along with several other people, made my feelings clear about this article on Facebook. Yes, this is an emotional response from a Mum of autistic children, but that is kinda my point. In my experience this article in no way reflects the feelings of parents of autistic children. Yes, my children are 'high functioning' so some would say that it's easy for me to say, but autism is no picnic, high functioning or not.

Surely the very nature of being a parent means your life is enriched by having children, there's no love in the world like that of a parent for a child. Are we to presume that that love is somehow diminished by autism? Or that we were cheated out of parenting a 'normal' child. I also have two non-autistic children and as anyone who reads my blog will know, they can be just as challenging at times, but my love for them is no more or less than for the others. I'm with Autism Daddy on this one; you hate the condition, but you don't think it would have been better if your child had never existed in the first place, at least I dont.

I have reposted the little I have written specifically about my childrens' autism. I would advise that if you want the real story about autism, ignore all this irresponsible reporting out there and ask someone who lives with it every day, not a 'dispassionate observer' such as Carol Sarler.


It’s not easy being Sam

Why is it that a child whose devout obsession is biscuits, when offered a broken one would rather starve? Everything should be whole, intact, and ideally symmetrical. The National Autistic Society estimates that approximately one percent of the UK’s population suffer from Autistic Spectrum Disorders; our five-year-old son, Sam, is one of them.

Before Sam was born my perception of autism was of Dustin Hoffman types from Rain Man, or the unruly kids labelled with ADHD because they were out of control. I admit that I was once party to the belief that what was needed was good old fashioned discipline. Then Sam came along…

He came into the world bang-on his due date weighing in at 10lbs 1oz (consequently relegating our wedding anniversary to the second priority of the day for at least the next 18 years or so). He was a placid and affectionate baby, sturdy and smiley, and such a flirt. Sam had enormous, sparkling blue eyes and the longest eyelashes I’d ever seen. He had ten fingers, ten toes and was the picture of health, we thought. As he appeared to grow even stronger it never occurred to us what vulnerability lay beneath the surface. He was about two years old when we began to realise that his “quirkiness” was a little more than that.

We started to notice his lack of eye contact during conversation, his frustration when he didn’t understand things, and his obsessive perfectionism. He began to react severely to unexpected and loud noises or crowds of people and became ridiculously picky with his food. His bedroom was immaculate; his toy cars all lined up facing the same way. He had designated drawers for Lego, building blocks, crayons etc. Weird perhaps, for a two year old, but he was so bright and happy, what could possibly be wrong? Despite Sam's challenging behaviour though, he was funny, playful, very affectionate and genuinely liked by most people who met him.

One of Sam’s recent obsessions is Mr Men, after seeing part of a DVD at a friends’ house. His obsessions are literally that; they occupy his thoughts day and night, which means whether we like it or not, they occupy our thoughts too. So it wasn’t a total shock when I was rudely awakened at four am recently, to find Sam peering at me with a look of deep concern on his face. Governed by an overwhelming desire to sleep; I gave in and promised to buy him the DVD if he went back to bed… my mistake. There followed an in depth discussion about which shop I would buy the DVD from, and what would happen if the shop didn’t have it.

“I’ll order it on Mummy’s computer” I sighed. This was another mistake because explaining the workings of e-commerce to a five-year-old at four o clock in the morning is even less fun than his constant re-enactment of Mr Bump’s calamities.

Just as I was about to spontaneously combust, he accepted my explanation and retreated. It seemed he was appeased enough not to risk an atom bomb going off in his mothers’ bedroom. About thirty seconds later though, my bedroom door re-opened just wide enough for me to see one mischievous, gleaming eyeball and I heard the muffled whisper: “you’re the best parents in the whole world Mummy” followed by a giggle and a scampering sound that faded into the distance.

Life with Sam has definitely been an adjustment. I sometimes feel that we are just along for the ride; it’s so easy to be drawn in and swept along by him. His three older siblings have always abided by the same rules and faced the same consequences, eaten what we eat. Sam’s reaction to food is particularly severe. Every mealtime I segregate his entire plate like a military operation. There comes a point when you ask yourself when you started buying into all this nonsense, but then you only need to experience the reaction if Sam’s cucumber (the only green thing he will eat with exception of Smarties) should come into contact with his blob of ketchup. If there is so much as a microdot of substance within a mile radius of his sweet corn, it renders it completely inedible. Don’t get me started on brown chips…

I imagine suffering from autism to feel like constantly trying to fit a square peg in round hole, and being constantly frustrated that you can’t, but as any parent of an autistic child knows; it cannot be so easily encompassed. Leaving the house with him is fraught with problems. If we take an alternative route to the one that he is familiar with he becomes very anxious. He still struggles to tolerate crowds of people or unexpected loud noises. Road works, construction, vehicles reversing, and alarms all produce genuine terror. Expect frustration of epic proportions if his toy car won’t fit inside his aeroplane; a serious issue for any five-year-old to be faced with.

Sam has no sense of appropriate conduct in social situations. He cannot read signals from others such as expression, tone of voice and body language. This is particularly obvious (and sometimes worrying), when he talks to strangers. He will happily fling his arms around you if he likes the colour of your sweater. His sisters call him "the kissing fish" because he's always looking for cuddles and affection. There is a pure honesty and naivety about him that endears him to most people. These people, of course, haven’t seen him screaming, whilst turning purple, at Jamie because she hasn’t replaced his book in the correct position on his book shelf (not to be confused with the magazine shelf, God forbid!).

I often wonder how it must feel to live the way he does, to be at odds with yourself and the world around you. He doesn’t choose to be that way, he just is. I have witnessed him dig his nails into his face and arms in sheer frustration because he can’t make himself understood, and it’s heartbreaking.

As a parent you constantly question the way in which you deal with things. Self doubt is often intensified by the judgments of those around you, but realistically all you can do is take each situation as it arises and do your best to get through it with minimum trauma to all concerned. In the absence of Super Nanny or a degree in diplomacy, you have to have faith that no one knows your child better than you do, and act accordingly.

We watched with trepidation as Sam started preschool. It was immediately obvious that he’d need intervention; he was completely antisocial. For the first six months he wouldn’t even acknowledge the other children, preferring the company of adults, and was horrified at the concept of taking turns.

I can’t praise the nursery staff enough for their help and understanding during that first year. It’s not easy to have to talk about everything that isn’t perfect about your child to complete strangers, but the educational and medical professionals who we have come to depend upon have endeavoured to make the process as stress free as possible, for Sam and for us. They helped to make his initial steps into education a wonderful experience for him rather than the traumatic one it could so easily have been. Once upon a time he couldn’t even tolerate the sound of children singing, yet now he loves to sing, albeit horribly out of tune!

The next big challenge Sam faced was full time primary school. We all agreed that he wasn’t ready but the options were few. So with support and gentle integration, off he went. He has his own teaching assistant who as much as anything else makes school a less daunting place for him. He’s now in his second year and has friends of his own age. He still doesn’t cope well with large groups of people, noise, or deviations from his routine, but the progress he has made has been immense.

Sam can be the hardest work but the most amazing child; his odd perspectives, his mad ramblings and quirky personality. Just having a conversation with Sam can be both frustrating and fantastic at the same time. We’ve become accustomed to translating his fabricated words and bizarre gestures. Coming to understand the meaning of his own language is a glimpse of his private little world and to see things through his eyes can be just magical.

He was standing behind our back door recently, in the very spot where the door needed to be if I was going to open it far enough to take the rubbish out. When I asked him to move out of the way for the third time, his response was to stand bolt upright, put his index finger over his lips and whisper “Sshhh, it’s OK Mummy, I’m in thin mode”. Oh bless you Sam, if only life were that easy!

Managing Sam’s autism requires patience, understanding, and tactics! But as any parent knows; we’re only human. I often have to remind myself when he is testing me to my limits, that it is more stressful and upsetting for him to endure his own turmoil than it is for the rest of us to tolerate how it manifests itself. Three years ago I wondered if he’d ever function successfully in society but now he is thriving, albeit partially in his own little world. I’m so proud of all our children. Sometimes, on a good day, I allow myself a little pride in me too. It soon passes though, and the familiar feeling of being inches away from throttling one of them returns!


Our ten-year-old daughter Jamie is an adult trapped in a child's mind. Not my words, but those of one of the many educational psychologists Jamie has seen over the years. She is slightly autistic; having Aspergers Syndrome and ADHD.

When I say slightly, I mean you wouldn't notice anything different about her at first. Perhaps her abruptness; alot of people think she's being rude but unfortunately whatever is in Jamie's brain tends to come out of her mouth, regardless of who she is talking to. She doesn't see why what she has to say shouldn't be equally as important as any adult's offerings, and quite often she has a point.

She has beautiful shimmering blonde hair (which she has been known to attack with scissors, much to my horror), big blue eyes, and cute freckles which pepper her cheekbones. She's tall and has huge size five feet, but she's fine with this as Grandad has told her that all the best swimmers have big feet - Thanks Dad.

Actually, thinking about it, the first thing you would notice is her weird (and dreadful) fashion sense. Not that I have one iota of fashion sense, but any reasonable person can see that she is stark raving mad when it comes to clothes. Jamie likes psychedelic patterns, clashing colours and shocking metalic creations that wouldn't have looked out of place in Dallas. She was recently choosing some socks and of all the pretty girly things; socks with characters on, pastel coloured socks etc, she instantly zoomed in on the in-your-face, coloured, striped punk socks. That's my girl.

We realised later that she already had a grey and black horizontal striped jumper, which matched one of the pairs of socks, and by coincidence she had been given some pyjama bottoms in the same stripey colours. Jamie thought this was fabulous and appeared downstairs wearing the striped jumper, bottoms, and socks and refused to accept that she looked like she'd just escaped from Broadmoor. She's like a prisoner on parole anyway, I have to check her every morning before she leaves for school to see that she isn't concealing the punk socks under her long trousers or has tried to smuggle in a phychedelic top for PE. God knows what they think of us at that school!

She has the attention span of a goldfish unless she is doing something she is really interested in, in which case it's like trying to contact an alien space ship orbitting planet Jamie. She resides there quite alot, especially when she should be doing mundane tasks such as getting dressed for school or tidying her room. What is so fascinating about her toothbrush? I have no idea; and yet every morning she can be found stood in front of the bathroom sink, staring trance-like at her Aquafresh Flex, contemplating its mythical properties.

Jamie is sassy, she says what she thinks and she's intelligent. A good thing you might think, but aside from landing herself in trouble on a regular basis, it's quite weird when you put that into the context of the sort of things a regular ten-year-old talks about. She'll jump from playground gossip - "mummy did you know that such-and-such-a-body has broken her foot?" - to "I do hope they took the correct precautions when they X-rayed it". She was watching some people move into a house on our street when she was about five. They were carrying the sofa across the road and set it down to get a better grip on it. Jamie was most indignant at this "Mummy! Those people have left a couch in the middle of the street! That will cause confusion and delay!" Confusion and delay??? May I introduce you to Jamie Lee; the youngest ever member of the local neighbourhood watch?

We have such interesting conversations with her but she can be mind-boggling. She's recently been trying her hand at our Lancashire accent. Lancashire slang, when spoken in a pure Queen's English accent is possibly one of the funniest things I've ever heard!

Despite being so colourful, Jamie still feels insecure because she has always been very aware of being different from her peers. She wasn't very sociable during her first years at school, and the other kids seemed to sense that there was something different about her. In those early years she preferred to play alone using just her imagination, but as she matured she began to crave the friendship of other kids her age. She is getting there slowly, learning to fit in and making friends. I'm so pleased for her because there were many days when I would walk past the school playground and see her sitting in a corner all alone, looking so desperately sad. On those days I wanted to scoop her up and take her home with me; somewhere safe where she knew she was loved. She has come a long way since then, still on her own planet most of the time but she now has friends who sometimes get to go there with her.

It is a shame that she is just beginning to be at peace with herself and adolescence is looming, and knowing Jamie, it will be an experience!


  1. brilliant clare.
    the woman who wrote the article in the daily mail based her article on one child with dare she think all our kids are the same. autism has lots of good points aswell as bad points. id never wish my son hadnt been born.

  2. "do I think that everyone concerned would have been better off if Tom's had been a life unlived? Unequivocally, yes."

    I very much doubt Tom's parents see it that way.

  3. Yes, raising a child with autism, or any disability, is challenging, but raising children in general is challenging. One of the joys of life is giving your love and time to someone in need, without expectations. Your children are lucky to have you. I'm a speech-language pathologist who has worked with many children with autism and their families. The progress and success I have seen over the years is incredible. Is autism curable? No. But those with this disability can lead productive, peaceful lives. So much lies in attitude and acceptance. All the best to you and your robust family.

  4. I love that you demonstrate compassion for your children and think about what it must be like to be them. This is precisely why I believe that the best way for us to combat ignorance (mean-spirited or not) about all sorts of issues, from autism to abortion, is to share our unique stories and make them human. Each and every one of these children are human beings with wonderful personality traits as well as challenges -- just like the rest of us. Thanks for sharing your story!

  5. Thank you Peggy and Kario. I usually opt to see the humour in the daily life of our family, but some issues are just too serious to be laughed off all the time. Sometimes, somebody needs to say something meaningful and this, for me, was one of those occasions. I'm off my soapbox now and normal piss taking will resume as soon as one of them, or me, does something daft enough to write about ;)
    Thank you for your comments x

  6. I salute you, and am thankful you have a child who has been correctly diagnosed and is being supported by such a wonderful mum. I do not have kids with Autism, but my husband has finally been diagnosed with Aspergers at the grand age of 41, after struggling for most of his life with antagonism and mis-understanding of his "odd" behaviour. He sees the world as black and white, no shades of grey, he speaks exactly what is on his mind, with no thought of the social and most importantly , work related consequenses. His life has been hard, but he was never a "blight" on his mothers life, any more than a blight on mine. I could see he had problems not long after I met him, and have tried to help and support him best I could. Its amazing, though, what an official diagnosis can do, and the understanding of that made a huge difference to our lives. He is no longer thought of as "odd and disruptive", but "that's Richard,he can act a little funny, but thats just him, he's OK!" He is a productive, useful member of society, he is my beloved husband, and the devoted father to 2 wonderful little boys.