Often, parents who have a child with autism are driven to learn more about the condition in a more academic sense, and their new knowledge can also lead to new careers.
Dr Clare Lawrence is one of these people. Her interest in autism was sparked as the parent of an autistic child. She is now a Senior Lecturer in Teacher Development at Bishop Grosseteste University in Lincoln, where she is the English Secondary lead with a special interest in autism education.
For the last fifteen years Clare has been working with parents, schools, universities and autism experts to explore practical solutions on how to make school make more sense for children with autism, and how to help promote understanding of the condition. She's now written a book about it called Explaining Autism and is offering three free copies to lucky SNJ readers. Her website is at https://www.clarelawrenceautism.com
Explaining Autism, by Dr Clare Lawrence
Our son has autism. He is now 19 and is studying Psychology at university.
If I could have read that last sentence fifteen years ago when we were struggling with his diagnosis, I would have wept with joy. What we were struggling with at that time was not difficulty accepting his autism or anger at the cards fate had dealt him or even grief for the child we thought we had, although there were elements of all three. Our struggle at that time was above all else with fear.
I have met a great many parents of autistic children since, and I would say that fear is our greatest common denominator. Your child has this strange, unfathomable condition and no-one seems to be able to tell you what that will mean for them. Perhaps they have no language. Perhaps, like Sam, they have lots of words but very little communicative ability. They may not turn to you when hurt or upset, may reject physical contact, may experience terrifying meltdowns. What is going to happen to them? How are they ever going to learn to cope ‘out there’?
Of course, the only answer to that is to let time unfold. We cannot predict the outcome for our children. All we can do is do the best we can – in whatever way we choose – to help them on that journey. What does help, though, is understanding. I said earlier that autism is ‘unfathomable’. It is certainly something which is difficult to get your head round, especially as until you become the parent of an autistic child, you may not have had much experience of it – at least consciously.
The challenge for understanding
Autism is such a puzzle because it presents in so many ways. No two children with autism will be the same, and indeed a child with autism will be different at different points in their lives, on different days and even at different points in the day. This is partly what makes autism so fascinating, but it does make it challenging to comprehend as you start off on your autism journey.
Many of us who have made that journey have become totally hooked. I’ve even heard it referred to as the ‘autism bug’ – the way we get totally fascinated by this fascinating condition. Certainly, greater understanding of it has helped me to overcome the fear. As I have understood Sam’s autism better I have feared for him less. Understanding why he does things, and doesn’t do other things, means that I have come to understand that his behaviours make sense. And that is a great relief.
I wrote ‘Explaining Autism’ partly in response to this challenge. It is extremely difficult to ‘explain autism’, but I believe it is relatively easy to explain the individual manifestations of autism as they appear in individuals. If you start from the premise that everything that child or adult does makes sense to them, then the autism is no longer unfathomable, but entirely logical. If having your hair cut hurts, you scream. If baked bean juice touching mashed potato makes you feel sick, you don’t eat it. If listing the subcategories of sharks makes you happy, why wouldn’t you do it?
Once you see behaviours as making sense, too, they become much more normal. You realise that all around you and all through your life there have been people who approach the world in this way. These people may not have had a label, but they are familiar, and studies have shown that once we are familiar with something, we are far more comfortable with it. Autism isn’t the norm, but it is a great deal more ‘normal’ than we believe when we are first facing a diagnosis.
Of course, that isn’t the end of the fear. Sam is still autistic, and the statistics aren’t good. According to the NAS, at least one in three autistic adults experience severe mental health difficulties[1], and only 32% of autistic adults in the UK are in any kind of paid work, even part-time[2].
There is a great deal more that we all need to do, and Sam is going to continue to need our support for many years to come. We will continue to worry about him. On the other hand, we have friends with children the same age who do not have autism. One has a job and has just bought himslef a particularly lethal-looking motorbike; one has signed up to a gap-year job teaching in Cambodia; another is involved in relationships which would make your hair curl.
We will always fear for them. It’s part of the territory of being a parent. But perhaps as we come to understand autism, we can begin to accept that our fears – like are children – are not ‘worse’. They are merely ‘different’.
- [1] Rosenblatt, M (2008). I Exist: the message from adults with autism in England. London: The National Autistic Society, p3
- [2] The National Autistic Society (2016). The autism employment gap: Too Much Information in the workplace. p5
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Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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