The following question was posed to me in the ‘Ask the Experts’ section of AuKids magazine (http://www.aukids.co.uk/) in their Spring edition, 2014:
‘How and when would you recommend I tell my child about their diagnosis? I am nervous about discussing it.’
This was my response (with some additions):
As is so often the case in the autism world there is no simple ‘one size fits all’ answer to this issue – and yet it is such an important one! I tend to suggest that there are three aspects that need consideration which will help decide the ‘when’ of broaching the subject, and these are:
- intellectual ability
- cognitive and communicative ability
- motivation
Simply, unless the individual has sufficient skills in the first two and a certain level in the third, it is unlikely that any discussion will be beneficial. However, with the right mix of these three, I would think that you are good to go.
It is always a good idea to think long term – so, from the earliest possible age, start to identify concepts such as ‘difference’ – this can be a daily game and should always be based on the philosophy that a) yes, the world is full of difference, but b) being different is not a bad thing. One such game (and use your imaginations to create others) is what I like to call the bowl of fruit game. Have your pre-prepared bowl full of oranges, with the one solitary apple. Questions – are there loads more oranges than apples? [Yes]. Do you like apples? [Yes]. Are apples different to oranges? [Yes]. Does this make apples any less worthy? [No]. does the fact that apples fit different ‘criteria (colour, taste, etc.) make them somehow inferior? [No]. These sorts of questions/games can develop a child’s conceptual understanding of difference, and how difference does not mean anything negative. In a similar vein, diversity and individuality can be notions that are developed in a simple, but positive manner. Then, when it is crunch time, the individual should have an array of ideas and terms than are actually applicable, as opposed to a confusing new set of communications that may muddy the waters.
The individual may also ‘tell’ you when s/he is ready. Questions such as ‘why can’t I do that as well as her?’, or any questions relating to difference are indicators that the individual may well benefit from having a better understanding of self.
I am beginning to reject the term ‘diagnosis’ – one gets diagnosed when there is something wrong with you in medical terms, and this should perhaps not be applied to autism. I far prefer the term ‘identification’ and the connotations with ‘identity’ – to discover that one has a new identity that explains so much can be a wonderful thing – as opposed to the doom and gloom so often associated with a diagnosis. So, please be careful how you choose the terms you use, as the longer term impact can be considerable. If it is feasible bring the individual’s interest into the equation – there are many famous real life and fictional autistic people that you can refer to if applicable. What is also crucial is to ensure the individual understands that just because they are autistic it does not mean s/he will be the same as others with the same identification – there may well be some similarities, but everyone’s strengths and weaknesses are their own. It’s important to make this clear to avoid potential issues with poor self esteem.
As much as possible make the news positive – this is an explanation of who a person is, not a dire foreboding of dreadful times to come! I like the Tony Attwood style of ‘congratulations’ when it comes to understanding one is autistic. However, do also be honest, as the individual is likely to store what has been said and revisit it often. Make the person feel exactly as they should – i.e. as a wonderful, interesting, different to the majority, unique person who has a fantastically interesting brain, and whose future could be anything they choose. Being autistic does not preclude anything at all, apart from not being autistic!
I very much like your use of the term ‘identification’ as opposed to diagnosis. I’m going to adopt it from now, thank you! The former sounds so much more positive, especially for the child who likes to identify, recognise things and work things out. I did use sort of preparation questions, very similar to the fruit bowl example, with my little boy over the last few years, always wondering whether and then how exactly to talk about and name the difference so that he and others could understand it more. Ultimately he told me the right time when this summer aged 8, I used the word autism and had to explain it when talking about my friend’s foster children. In that moment, he suggested he might have something like that. I guess he picked this up via osmosis as no one had, to my knowledge, ever talked to him about it directly. This prompted me to use a long but fun card game (promised with a bit of a build up as a ‘good game’) that I devised where he would keep having the opportunities to answer ‘yes’ and make a great big pile of ‘yes’ cards. For example there were questions like: do people often tell you to give them eye contact? Does it really annoy you if people change your routine? Is it really hard for you to do your school work unless the classroom is really quiet? As a researcher, I know that these are of course leading questions. But that was the idea and they were exactly tailored to help lead him to an understanding and a positive one at that. All these questions addressed a different aspect of the ‘diagnosis’ tool and I’d written them on cards with coloured shapes on the back. Each shape aligned to different elements of autism: communication, learning, sensory issues etc. We later had fun sorting the cards according to shapes and trying to decide what theme each shape was about. It was amazing how well my little boy understood the categories. My child’s delight at seeing himself in all these questions/descriptors was an experience I’ll never forget. Seeing a pile of cards where you ‘succeed’ in getting the answer right with a yes made it so positive and ultimately I think it opened up a huge and wonderful conversation between us that will keep on going.