This blog will try to be truthful. There will be painful episodes. That are tinged with regret and envy, frustration and the need to forget. Equally posts will talk of promise and potential. My wonder at the workings of my son’s brain. The many triumphs that autism brings. The positive tears.
Because what I want to share is the everyday role autism plays in my life. When it takes centre stage, like the end of term school play with all its associated anxieties. Or when the parts played by a supporting cast of family, friends and professionals inspire, impact or irritate.
And as if to demonstrate the non-linear, ever changing nature of autism, I may flit from the current to any time since diagnosis, in January 2011, and back again. Themes may be revisited. In the colourful world of autism, discipline is never black and white, and always something to discuss, evaluate and discuss some more. Likewise learning and language. Not to mention denial. What about what ifs? They exist and will be personally examined for sure.
My first post is about the organisation, Ambitious about Autism, and more specifically their online resource, Talk About Autism, who’ve kindly agreed to promote the blog within their community and beyond:
So when my son, Isaac, was diagnosed in early 2011, and we emerged from the paediatrician’s meeting drained and drowning in a sea of information, that alluring alliteration rose to my mind’s surface and proceeded to be a lifeboat of sorts.
Eighteen months on and my wife and I are fully immersed in the organisation as Parent Patrons. And it’s Talk about Autism (TAA), the vibrant online community within Ambitious about Autism that has perhaps been most critical to helping us come to terms with Isaac’s autism.
In its most basic form, TAA is a forum (ever so gently) moderated by the brilliantly enthusiastic Mike. Where questions are posed and answered, conversations launched and new people nurtured with the help of the community champions. It’s actually a lot more than that. It’s a safe haven from the everyday assault course of discrimination, generalisations, judgements, ignorance and, well, exhaustion and difficulties, that parents of children with autism battle with (to varying degrees) day in, day out.
The sense of isolation that we feel having a son with autism is quite subtle. Friends and families are accepting and alert. But we can’t expect them to appreciate or even understand the intricacies that can be so defining yet, if handled wrongly, debilitating. Rigid routine, peculiar diet and sensory stimulation are on the face of it easy concepts to digest, right? Wrong.
There’s the Isaac who people see as grumpy, bad tempered, and badly behaved – and therefore unable to sit and interact at a birthday party. Then there’s the real Isaac who we know is disorientated because the room looks radically different to when he was last there, over stimulated by bright lights, noise and a plethora of unknown people – and therefore unable to sit and interact at a birthday party.
In the TAA community, everyone knows that we are living the latter; and that reassurance literally gives us strength. It can also give us answers. Pushing scooters the wrong way, flapping flannels, licking, microwave obsessions, repeating words, requesting that I smile many times a day to confirm I’m happy (because in his specific mind, if I’m not smiling I’m not happy), Isaac’s autism changes from month to month. Someone in the community will always be able to explain or empathise or both.
TAA stretches beyond the forum of course. It acts as a diligent and discerning curator of the multitude of autism information online. A measured number of relevant stories are posted that help us to continue our understanding. Only recently Mike posted a piece that articulated succinctly the difficulty people with autism have with discriminating stimuli. How they struggle to ignore what may be irrelevant because they are visually bombarded by lots and lots of stuff all the time.
This helped me understand – and explain – why Isaac might find himself focussing on a book on a crowded bookshelf as opposed to the big and loud children’s entertainer performing in front of the barely noticeable bookshelf (let alone book). It’s his way of making sense of his environment at that point in time.
And one last point to make about TAA, is that it puts people with autism’s well-being at the heart of everything – by enabling healthy debate. People have different views and experiences. Which will happen with this complex, life-long condition. By listening to other’s advice and choosing to agree or disagree, discount or discuss, we are all moving in the right direction towards a better life for the whole autism community.Leave a Reply