Debby Elley looks at how we can help children with autism to feel good about themselves
My twins were diagnosed with autism on the same day in November 2006. By the time the autism assessment test (ADOS) had come around, we were pretty much expecting the outcome to confirm that they were both on the spectrum. There had been pointed hints in this direction for about a year and although no-one wanted to nail their colours to the mast, phrases like “speech delay” and “social communication impairments” had us prepared for the inevitable.
We were expecting it, but I still felt miserable after the news was broken to us in a quiet and tactful way. The twins – cute, bubbly and interactive – were each given a score and it felt like they had failed the test for “normal”. The new label temporarily destroyed my happiness. Worry over the unfamiliar was mixed with a lack of clarity over how impaired they would be and what it meant for their future.
I can’t recall the follow-up meeting, only that it involved arranging a series of referrals. The thing is, I can’t remember anything positive about the experience, but then how many parents do feel good in those months post-diagnosis?
Too much negativity
My twins Bobby and Alec are now 14 and are as charming as ever (although with a giant dash of teenage stroppiness).
It took me many years to come to the conclusion that autism isn’t a disaster but a difference. The question I’m pondering is: is it really inevitable that this should take years? An autism diagnosis is by no means insignificant and can’t exactly be laughed away, but should it really make parents feel so downcast?
There are several problems with feeling miserable after a diagnosis. The first is that it stops you from “hitting the ground running” with any intervention, as instead you’re going through a period of mourning. The second is that it robs you of any sense of power in your own parenting. The third is that it leads you to consider your children are somehow lacking or lesser beings. As well as affecting you, this emotional response in parents transfers to their children.
Longer term, there is too much at stake for this issue not to be addressed. How parents first understand and process the news that their child has autism can colour their entire approach towards parenting, including their thought processes when things go wrong. This in turn will affect how they cope.
Whether you perceive autistic difficulties as “impairments” (the child is a faulty version of a non-autistic one) or the result of different neurological wiring will have a huge impact on your state of mind. In short, how are our kids going to grow up feeling positive about their autism if a parent’s original response to news of their condition was shock and depression?
What makes me smile (in a cynical way) is that there are now several good books on the market dedicated to telling your child about their autism. The authors have had to write these to meet demand. Why? It’s because parents fear that in telling their child about their autism, they will transfer their own emotions from that rather traumatic post-assessment time. It requires a self-help book to unpick that negative thinking and knit it into a more positive approach. That’s right, we have to undo any notion of the sense of “faulty” or “wrong” for the sake of our kids, when the same courtesy wasn’t afforded to us as parents.
Autism is ever changing
So, what should professionals be telling parents in those delicate early days? Well, there are some key things that I learnt about autism that I think would have helped me to come to terms with it a lot more easily.
Autism is a life-long condition. However, that phrase gives the impression that autism is like a solid brick, which stays the same over time. In reality, autism changes and is mouldable. Although the autism itself may never disappear, the core difficulties associated with it can greatly reduce with intervention, maturity and time.
Of course, practitioners may suppose that to over-promise will raise expectations, only for them to be dashed. Yet wherever you sit on the spectrum, things do change. My twins have greatly varying communication abilities, but both of them have made dramatic improvements. In fact, I don’t know a child who hasn’t. To be positive isn’t to promise the world, but we need to get across the message that although these difficulties are very real, they can be reduced and they are simply a logical response to a different interpretation of the world.
It isn’t that professionals try to be misleading. Rather, in the absence of information like this, parents reach their own rather despairing conclusions.
Every aspect of the spectrum – communication, social interaction, rigidity of thought and sensory difficulties – can be heavily influenced by our understanding of the difficulties that underpin them and by intervening with simple strategies. Even rigidity of thought – something that I thought we were stuck with – can bend if you apply the right strategies. No-one told me. I learnt that the hard way.
Plus, we know that anxiety is linked to many of the difficulties experienced in autism. If a parent isn’t anxious about their child being autistic, they won’t transfer that emotion onto the little one, and kids then stand a better chance of building resilience and confidence in who they are.
And what of autistic strengths? Is it really fair to present autism as “impairments” right from the start, when autistic thinking can be so useful for society? Not everyone with autism is a “savant” or genius nor should we pretend they are. But those with autism, once they love something, become specialists in it. This focus and attention to detail can lead to immense achievements. There’s the logic, systemising, creativity, recall, honesty and tenacity – and the list goes on. Must we put such weight on social “impairments” when there is so much more to autism than that?
Autism doesn’t necessarily equal lack of ability or intelligence. Parents should know this from the start. It’s quite simple, really. All I ask is that they are shown both sides of the same coin, rather than feeling that their precious currency has suddenly been devalued.
Debby Elley is the Co-Editor of AuKids Magazine. Her new book 15 Things They Forgot to Tell You About Autism is published by Jessica Kingsley: