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PART 1
THE AUTISM
SPECTRUM
The autism spectrum has a longer history than you might realise. We can easily refer back to the 1940s to read about the set of behaviours that the clinicians Leo Kanner and Hans Asperger described but it would be naive to think that the behaviours themselves first appeared at this time. What we now classify as autistic behaviours, for example, have long been proffered as explanations for the achievements of individuals such as Isaac Newton, Thomas Jefferson and Albert Einstein (James 2016), or at least been recognised in descriptions of people in the past, including Victor, The Wild Boy of Aveyron. Even the nature of âautistic thinkingâ was noted by the Swiss psychiatrist Eugen Bleuler more than a century ago (Donvan and Zucker 2016, p.40). And doubtless, there are many among you who can think back to secondary school and wonder â knowing what you know now â if autism would have been a good fit for the classmate you recall as quirky or aloof.
So autism in form, if not name, has been around for a long time. To my mind, the behaviours diagnosed by contemporary professionals are not vastly different to those described by Kanner and Asperger; the evolutions are more apparent in the terminology and public conceptions. In the 1890s, for instance, children could be defined as feeble minded or as imbeciles and even, in the 1940s, considered handicapped within the boundaries of delicate, educationally sub-normal and maladjusted (Hodkinson 2016) â terms that seem clinical, unethical and shocking with the wisdom of hindsight. But perhaps we should not be too complacent; they were, after all, accepted in their time. Will the many terms we have at our disposal remain politically correct in the decades to come? Even now, the words ânormalâ and âtypicalâ can be inflammatory, and advocates in various quarters already discuss the spectrum as a concept embedded in neurodiversity rather than a pigeonhole in society.
With all that we have begun to learn in recent decades about the intricacy and idiosyncrasy of ânormalâ brains and mindsâŚI hopeâŚsociety will find ways to make best use of the talents and energies of differently able minds⌠(Tammet 2009, p.362)
Itâs ironic that a condition comprising the need for sameness and inflexible thinking is in itself continuously subject to change and open to interpretation. Will there come a point thus when the diagnosis collapses under its own weight of restrictiveness or breadth? And is this the most important argument? Perhaps the âcorrectnessâ of diagnosis should focus on the person, not the terms â ultimately the means of respecting, understanding and addressing an individualâs needs and strengths. Steve Silbermanâs (2015) book NeuroTribes, for instance, has a strapline urging readers to âthink smarter about people who think differentlyâ. With luck, I have illustrated a little of this in my poetry.
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Chapter 1
DIAGNOSIS
1. Diagnosing Doubts
(A poem about sharing the diagnosis)
How do I cope with these worries and fears?
These thoughts that temper my teenage years.
What if I am? What if Iâm not?
How will professionals explain the issues Iâve got?
Why is the normal box papered with doubt?
What if itâs opened and the spectrum falls out?
What we can learn
Pause for a moment to consider what the diagnosis of autism means to you. Imagine seeing it writ large on a road sign. Metaphorically, are you at a crossroad or a blind corner? Inching down a country lane or speeding on a motorway? Have you arrived at the scene of a crash or reached the airport with a new destination in sight? Autism means different things to different families, but in most cases will be considered a life-changing event. Itâs one thing to believe you or your child has a diagnosis but something else to know it â for some families it can be felt first as a bereavement, a disappointment or a failure. These feelings and others are captured in an article written by Emily Perl Kingsley called âWelcome to Hollandâ. The article uses the act of going on holiday as a metaphor for parents coming to terms with their childâs disability: travelling to Italy and then discovering that the plane has been re-routed to Holland. Emily proposes that the ensuing confusion, frustration, loss and disappointment will be replaced by calm, acceptance and enjoyment. Whatever we think about autism â seeking, doubting, accepting or avoiding the diagnosis â it is here to stay. The word and its derivatives have been around for a long time and its behaviours longer still. Our poem presents us with a child in her teenage years, not yet diagnosed and agonising over its uncertainty. In the event that she is diagnosed, we can only imagine how she will come to terms with it, let alone her family. I think it is important that children who have the capacity to understand their diagnosis know about their diagnosis. Not everyone will agree with me. I would, however, encourage people to think not only about the disadvantages of sharing the diagnosis but the very real advantages too.
How we can help
1. When it comes to sharing the diagnosis with your child, donât underestimate the importance of timing. Itâs not just about when you and your child are relaxed or how long you think the conversation will last. The ârightâ time should initially involve consideration of her age and level of understanding as well as consideration of how prepared and ready you are to deal with her responses.
2. There are plenty of resources and strategies available for explaining diagnosis. What works for one person will vary for another, but in most cases will include some sort of visual resource â something that children can see. Remember that an autism diagnosis includes difficulty listening to, processing and responding to spoken information. I tend to use stories with young children and mainly drawing and guided worksheets with older children. When it comes to teenagers, I usually recommend books and websites for their parents to share with them before they meet me, and then use this as a way of opening our conversation.
3. Some parents may feel daunted by the prospect of explaining the diagnosis to their child and worry about getting it wrong. Try to treat it as you would any important or sensitive conversation with your child and think about what you are going to say in advance. It may sound a little odd to use an analogy when we know that children can take things literally (we should still be mindful of that), but I often find that making a connection between the personâs diagnosis and some aspect of their character or anxieties makes the content more tangible. Itâs quite common, for example, to use a computer analogy to talk about the brainâs wiring, or traffic jams to talk about sensory overload.
Where we can go next
* Elder, J. (2006) Different Like Me. My Book of Autism Heroes. London and Philadelphia, PA: Jessica Kingsley Publishers
A book showcasing people past and present who have made significant contributions to society in areas suc...
