Someone said to me the other day: ‘I hate it when parents of autistic children make it all about them’.
Immediately I felt sick with guilt, asking myself: ‘Am I a bad parent? Do I do enough for our son? Is our daughter missing out on things she shouldn’t because her sibling is classed as disabled? What more could I be doing as a mum to help my son access more academic education?’
And then I felt more guilt for brooding and tried to focus on all the things my husband Geoff and I should be grateful for.
That our six-year-old son Rory is, at the moment, happy and secure with a sunny outlook on life, that he has stuck with the toilet training it took us three years for him to cope with, that he is finally in the right school for him – and so the constant cycle of concern and second-guessing rolls on.
The question that had prompted this stranger’s verdict on my intentions, was whether or not I should write something to mark World Autism Awareness Week – which this year runs from 30 March to 5 April – talking about how raising a child with special educational needs impacts you as a person and your whole family.
All parents worry about their children, but I think there is a special kind of anxiety button that is switched on in you the day you are told the future you had anticipated for your child now looks very different.
Rory was two-and-a-half when our fears that he had Autistic Spectrum Disorder (ASD) were confirmed by doctors. We’d expected it, tried to emotionally prepare for it, but however ready you think you are to be told that your child has a social communication disorder and an associated developmental delay that will affect him for the rest of his life, it is still a bit like someone dropping a 10-ton weight on you from a great height.
What is also hard is that, after diagnosis, you are left alone to pick up the pieces, adjusting to the fact that as parents you have overnight become people with lifelong caring responsibilities, trying to adjust to your new family ‘normal’ and – over time – trying to build a community of support with others in the same boat as you who understand.
In the years since ‘diagnosis day’ there have been many ups, many downs and many in-betweens, with key moments that become seared into your memory.
There was the uphill emotional battle to come to terms with the fact Rory would probably never attend a normal school. The meeting where a well-meaning but blunt teacher told me that a child with our son’s needs would be a ‘drain’ on their resources, letting down his potential classmates.
The incident where another parent – again well intentioned, but clumsy – said of Rory: ‘Well, we all just need to work with what we’ve been given haven’t we…’ Like he was a factory second.
The day I had to fill out a 90-page form listing in lurid detail all the things our child couldn’t do, having been told to focus on Rory on his ‘absolute worst day.’
And the local council transport department who told me my vulnerable child had been plotted as a ‘dot on a map’, with no consideration at all for his particular needs.
In these current crazy times we’re living in, there’s the genuine worry about not being able to buy any bloody pasta or brioche when it’s often the only thing Rory will eat.
But there’s so much good stuff, too. Top of the list currently being that because Rory exists in his own little happy bubble most of the time, he hopefully won’t be affected by the coronavirus anxiety that is stalking so many children as we all adjust to a new ‘normal’.
Having a child with autism is something that touches everyone within a family in a significant way and many more people besides.
Being told that you have to advocate for your child and be their voice in this world – potentially for ever – is a life-changing thing. And honestly at times, a scary one.
So, I hope that by, in some small way, shining a light on what an autistic diagnosis can also mean for parents I’m not making it all about me.
This week marks World Autism Awareness Week, for help and support click here
Do you have a story you’d like to share? Get in touch by emailing claie.wilson@metro.co.uk
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