Thursday 12 November 2015

How To Tell A Child They Have Autism

It's a question I've had in my mind for a while - just how DO you tell your child that he/she has autism/ASD (Autism Spectrum Disorder) or that they are autistic*?

For the past couple of years I've wondered when the time would come, and if I'm honest I probably thought it would have happened before now. We are very open about autism generally, and discussed it with our eldest girl way back. It's not that we have tried to keep it secret from our youngest, but 'it' just wouldn't have made sense to her before now. Tonight we edged ever so slightly closer to THAT conversation.

After tea, I played Kirby with my youngest girl, but didn't do a very good job of it. I definitely didn't live up to her high gaming standards. When she got cross with me for being rubbish, I half-heartedly suggested that maybe it would be better if I didn't play that game with her any more at all... I should have known better. She threw herself onto the sofa with huge sobs and told me that 'none of my family are in my heart at all'** and cried that 'nobody understands how it is to be me, nobody knows what I need'.
As I picked my shattered heart back up off the floor, I wondered if the opportunity of a talk was arising. Sadly, she was too upset, and too tired, and wanted an excuse to avoid bedtime - but not if it involved talking. Or reading a book, sigh.
Girl hiding behind a tree
Gazing into space; lost in her own thoughts perhaps? 
Tonight's outburst has made me think again about when might be a good time, and how to start the discussion... and here's a few tips which I'll bear in mind:

Listen to your child

The words I heard tonight were a definite hint that our girl is feeling she is different. It's important to wait until the child gives you this indication that he or she has already had thoughts about their difficulties. There's no point blurting out your news that they have a diagnosis (or even a suspected one) until they are ready to begin to understand it in some way.

Pick the right time

Luckily I'm not too daft to realise that bedtime, or during a meltdown (or especially when both are occurring simultaneously), is not the right time. When your child is calm, and happy, and not in the middle of another activity which they enjoy, is probably the best time. Of course, that specific time can be hard to 'find', but once you tune into routines and understanding how long that certain YouTube clip has left to run, you could be onto a winner.

In the bigger scale of time though, how will you know when the right time is, at what age? Instinct is what I will have to go off, and I'm already promising that I won't be too hard on myself if I get it wrong. Every child is different and so there is no fixed age by which you should tell them.

Use the relevant approach for your child

It's very tempting for us to revert to ways in which we ourselves are comfortable when trying to impart information, but there's that old saying 'treat others how they would like to be treated'. In other words, consider how the information will be best digested by your child - could be via a book, a DVD, a social story, a cartoon, puppets etc. It's probably most likely that the news is best coming from a parent/carer, but it may be that there are other trusted individuals who have a good time to introduce the idea. Siblings, practitioners, school staff or friends might approach the conversation in a briefer, matter of fact manner, which could be good as an introduction... but this should always be discussed with the main caregiver first.

Plant the seeds

Subtle drip feeding should be the way forward here. A good start would be to chat about differences and others' difficulties, autistic or not, rather than just using the word 'autistic', or 'autism'. I'm hoping there are some YouTube clips of this type of idea which I can leave playing for when our girl walks down in the morning - no point in us telling her what to watch, that doesn't work around here. It all has to be very surreptitious.

Sadly I'm very well aware that some of our girl's peer group already know and understand that 'autism' word, and they could have already used it when talking to her. I feel like we should be 'breaking the news' first; then I remind myself it's not a rush, the time needs to be right.

Remember the strengths

Autistic brains are amazing. We need to remind our amazing children of their strengths - it's all too easy to focus on the difficulties. Strengths such as brilliant memories, honesty, loyalty, attention to detail, engaging personalities - again, every child is different. Every child has a strength but they may not necessarily recognise that themselves at a young age, so talking about those strengths can be incredibly powerful. The difficulties can also be explored, but preferably in relation to others. So for example 'Child A is good at playing football and you are good at swimming' or 'Child B can write stories very well but you are better at using computers'. Comparisons, approached positively, can be really helpful.

After writing this list, I went off to search our trusty friend google, and picking up on the 'plant the seeds' tip, I found a great post which you should pop on over and read. Mama Be Good wrote Telling My Child About Autism and it kind of summed up how I'm feeling now. It doesn't need to be a Big Talk, but we have definitely reached the stage where there needs to be some talk.

The next few months could definitely be interesting for us... would love to hear any suggestions or ways you might have handled it differently if you've already been there?!

* for more reading on language choice of 'has autism' or 'is autistic', please do check out this most brilliant post by Diary of A Mom.

** this harks back to a few years ago when she described to us very visually about how she has a big red heart for her closest people, those she loves and trusts the most, a small red heart for the next ones out, a pink heart for the next lot, then a grey one and finally a black one for those she really doesn't like at all.....

To find out more about our experiences, please check out our 'About Us' page. If you are looking for more information on Pathological Demand Avoidance, the posts below may help.

What is PDA (Pathological Demand Avoidance)?

Ten things you need to know about Pathological Demand Avoidance

Does my child have Pathological Demand Avoidance?

The difference between PDA and ODD

Strategies for PDA (Pathological Demand Avoidance)

Pathological Demand Avoidance: Strategies for Schools

Challenging Behaviour and PDA

Is Pathological Demand Avoidance real?

Autism with demand avoidance or Pathological Demand Avoidance?

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