Читать книгу Playing, Laughing and Learning with Children on the Autism Spectrum - Julia Moor - Страница 7

When our son was diagnosed with an autism spectrum disorder at the age of two and a half, like thousands of parents before us we roller-coasted through the typical emotional responses: dismay, grief, fear for our future, but finally relief. We conclusively had a name for this condition that was filling our little boy’s life with distress, impossible, repetitive and meaningless routines and such a reluctance to respond to us that we were sure he was deaf.

At the age of two, the world and people around Robin were mainly there to be avoided. His focus was only on ‘parts’ with no motivation to seek out the meaning of the ‘whole’: wheels on cars; strings on pull-along toys; lids on containers. Direct intervention, overly enthusiastic voices and physical encouragement to ‘play properly’ were met with hysterical screaming.

When we were given the diagnosis, upsetting as it was, it felt like we’d been given a map not quite to get out of the maze but at least to understand where we were in it.

As well as dealing with the challenges of obsessional behaviour, inflexibility, anxiety and frustration, my biggest concern was how to engage my son in meaningful activities at home – how do I help him play? At the time, there was lots of information available on autism, there was help with his speech and behaviour and health, but I simply found very little on how to play with my son – what to fill his hours with. Having studied child development in the past, coupled with my gut instinct as a mum, I knew that he was missing a vital part of his childhood; and watching his meaningless rituals and being constantly shut out were breaking my heart.

For 12 months my main focus had been getting through the day without distress, but I wanted more than this for my son and felt angry with the autism for robbing him of what I felt was his birthright. It seemed that so many things were off limits; his world (and mine) was getting smaller and smaller; at an age when curiosity was meant to urge him forward – to explore, to communicate, to experience and understand his world – my son simply wanted to shut it out. Frustratingly for me I knew that there was vast potential; an able, intelligent little boy held hostage by the different way in which his brain thinks and processes.

As someone who likes to feel that there is a practical solution to everything, I decided to haul myself out of the pit of ‘why us?’ and to really try to understand first, his disorder and second, how he as an individual expressed his autism. Armed with this information I knew there’d be no miracles but at least I’d be making informed choices and be doing everything in my power to shorten the distance between his world and mine. On top of this I just felt I had to find a constructive way to fill what seemed to be an eternity of weeks and months with a little boy that simply didn’t want to engage with the planet on which he was born. I didn’t know him.

I began to realize that the direct ‘front door’ approach to interaction was useless: ‘Look at this’, ‘Let’s do this’ ‘Come here and see’ – they were cues for him to protest or run off and avoid interaction: fight or flight. Instinctively I felt that there must be other pathways to access my son, and what I found through trial and error was that there was indeed a ‘back door’ where I could sneak in and capture his attention without him even realizing that that was what I was doing!

Gradually over two years we built up a repertoire of play, transferring similar indirect techniques from one activity to the next, building on success and learning from failure. I discovered how to improve communication, how to structure not only the day as a series of activities but activities as a series of tasks. I also found that I could punctuate the day with short bursts of direct learning tolerated by the prospect of a variety of motivational strategies.

It dawned on me through talking to and reading about other parents that they too had similar methods. After surveying a hundred such parents it became apparent that there were ideas out there but that there was also desperation for more. Our children are very individual; they deal with their autism in unique ways and are affected to different degrees with varying associated learning difficulties. Yet there are so many common threads: a need for routine and visual cues, problems with sensory overload, and a natural motivation to avoid anything outside the repertoire of familiarity.

At the start of our journey, I needed a book of ideas; something that related to my son’s specific collection of problems. Everything I assumed about parenting – providing love, attention and a stimulating environment – was rewritten by his diagnosis. It stripped me of my confidence as a mum. I questioned common sense because even that often didn’t work. Yet this book is about common sense. Mums and dads are in a prime position to help their children reach their fullest potential. Parents come armed with unconditional love, an unsurpassed knowledge of their individual child and the motivation and commitment to do ‘whatever it takes’. Thirteen years spent teaching adults with learning disabilities (many of who have autism or autistic features) combined with the mindset of a psychologist always challenged me to find ways to ‘share space’ and understand how my ‘atypical’ thinkers learnt. However, being a mum to an ‘atypical’ boy was the catalyst to putting together a resource of play ideas for parents with similar challenges. When we begin to understand how our children think we can use this information to help them engage both independently and in shared activities. I hope this book will not only provide you with a collection of useful ideas but will help you find a way of playing with your child that rebuilds confidence and relationships. The ideas are there to dip in to and try. Some may work, some may not – they do not constitute a task list that has to be ticked off and worked through! Choose those that you feel your child is ready to tackle, and that you are confident trying; leave the rest for weeks, months or even years later.

Our children’s development doesn’t correspond to a set of ages and stages and as such there are no age guidelines. Keep moving forward by carefully monitoring what your child is capable of and ready to tackle next – but don’t rush, push or pitch your expectations in advance of his ability. More fundamentally, the point is to illustrate that by really observing and understanding your child you can learn to tune into his most receptive moments, to tailor the environment to increase these opportunities and to interact with him in a manner that prolongs them.

Living with and loving a child with autism is an incredible journey of learning and re-evaluating what we expect from parenthood. As parents we often feel helpless when our children are first diagnosed – yet as parents we are in the best possible position to help.

Please note that the individual examples in the book are illustrations based on the types of experience reported back to me in the surveys and on my own experience. I’ve used the male gender throughout – this is simply to make reading easier and less formal. Throughout the book there are several comparisons to ‘non-autistic’ children. I prefer this term to the ambiguous word ‘normal’.