by Guy Shahar
7th April, 2017
Introducing a child to their autism is a major step. Guy Shahar shares his experience and reflections on how this might optimally be done.
Done in the right way at the right time, the initial conversation with a child about their autism can set a healthy foundation and even enhance a child’s sense of self-esteem. It can aid their understanding of how they fit into their surroundings and why some aspects of life seem to be more difficult for them, while appreciating the positives that their condition brings.
Done clumsily, it can similarly shape a child’s self-perception, but in the opposite direction.
When to bring it up
Leave it too late, and you could leave the child with lingering unexpressed confusion, self-doubt and despair about why some things are so difficult for them while those same things are so simple for others. But bring it in too early and it could be equally confusing for them – knowing that there is this thing about them called “autism” that makes them somehow different from others, and needing to identify with that, but not really understanding what it means and perhaps wondering whether it makes them something less than other people.
It is a delicate balancing act.
My own feeling it to assess when the child may be just on the verge of starting to notice differences between themselves and others. They may not display any signs of this awareness until much later, so it is a question of really connecting with the child and trying to get a sense of what they may be going through.
And then to do it in stages, very lightly introducing the concept at first, so the foundations are there to build on later. So how to do this becomes very important.
How to tell them
This is the most critical part, far more important than the timing, as the impression an autistic child gets from their parents about their condition – especially the first time it is discussed – will probably remain with them for life.
It is important to take an overview of this that takes in its many factors. If, for example, we decide that we will just talk openly and “naturally” about autism in front of the child from a very early age in order to give them a sense that there is nothing unusual or sinister about it, are we also being continuously very mindful about our subtle thinking and language relating to autism, which could easily deeply condition the child?
For us, it was very important to get the right tone from the very beginning, but also for it to be very light and neutral. Together with our Davis Method therapist, we decided to introduce the subject to our son – aged 6 and a half – in a light and matter-of-fact way, which left no possibility for his autism to be considered as anything remarkable.
She was speaking in passing with him about the different types of thinking people have. One of the types of brain that it was possible to have – and which he happened to have – was an autistic brain.
And that was it. He didn’t need to know more in that first instance. It wouldn’t have been meaningful or helpful to him at that stage – prior to becoming conscious of and worried about his differences from others – and it simply laid the foundation for an easier deeper discussion when that becomes useful.
That was its purpose. It means that when it does become appropriate, it won’t be a bolt from the blue that there is something about him that differentiates him from others and that he had no idea about. Rather, it will be a case of referring back to what he already knows and developing on that.
It also allows us to give him positive exposure to the concept when there is the opportunity. Shortly after his conversation with the therapist, he became fascinated by Albert Einstein, and so was delighted when we found online discussions about whether he may have had autism. At that moment, he was just happy to have something in common with Einstein. That was enough, and he didn’t need to find out more about what that meant.
Once he does start asking about what it means to have autism when it is mentioned, that will indicate that he is identifying something about himself that is different and that he needs more clarity on. When that happens, we can move onto the next stage, which will be to discuss the positives of autism along with the difficulties and how they can best be managed for a happier life with greater focus on his strengths.
The Language
There is a debate between talking of somebody either being an “autistic person” on the one hand and of them “having autism” or “being autistic” on the other. Some people feel that to “have” autism makes it sound like some sort of illness or burden that they are forced to carry, while other (perhaps more) people feel that talking about an “autistic person” makes it sound like that is the defining characteristic of them, when there is actually so much more to each person.
Speaking personally (and this is a very person perspective), I am happy for these phrases to be used interchangeably. It is not the language that is important, but the intention behind it. We need to use some words to talk about autism, and if we talk about “having autism” or “being autistic” in a loving way, it will not carry the negative connotations of either. If it is done with prejudice and judgement, or even sadness and heaviness, the negative connotations will blaze through regardless of which terminology is chosen.
Having said that, our Davis Method therapist managed to avoid both these phrases in a really positive and very brief conversation with our son about having an “autistic brain”.
What if I’ve already done it “wrong”?
We all do things that we would prefer to have done differently if we had had the choice much later (after we had already learnt more). But the fact is, we need to live our lives and deal with the situations that face us with whatever we have at that time. There is no manual to life, and there is certainly no manual to bringing up an autistic child. Even if there was, there would always be some larger or smaller group of people who disputed it.
So, the first point is to recognise that we did our best, and not to be hard on ourselves – rather to congratulate ourselves on doing the best we could, even if we understand now that it isn’t how we would ideally like to have done it: that understanding just wasn’t available to us at the time. This is very important, because our thinking on this will deeply and unconsciously condition how we proceed. What we do next is the important thing, and this should not be contaminated by subtle underlying anxiety, negativity, self-recrimination, apology or defensiveness, any of which could easily be picked up by the child and could further confuse and disorientate them.
It should also be understood that there is no “right” or “wrong” way of doing this. I am simply sharing some reflections that have been helpful to me on our family’s journey. I am sure that others can make other ways work too.
And the important thing is not what we have done up to this point, it is what happens next. The situation we have at this moment in time is just what we have inherited from the past. We can’t change the past, but we can change what happens from this moment on so that we can have a better inheritance in the future.
Whatever the situation now, the best way to improve it is to take a moment out and be clear about how we see our child. This means being completely open and honest with ourselves about how we have been perceiving our child’s autism. Have we been feeling heavy about it, or sad and despairing on their behalf? If so, they will be absorbing that feeling and it will become a part of their own self-perception (please see this article on containment for more on how that works).
Do we want to take this opportunity to modify how we see the condition and the possibilities for their future, and more importantly, the human being behind the label and the difficulties? If we do that and start to see their strengths as an individual in a more positive and hopeful light, they will absorb that perspective in the same way. Then, with both parent and child on the same page, more of their great positive potential can be naturally brought to the fore.
Then, less than optimal impressions given in the past can be gently, lightly and positively rectified in discussions (and, importantly, behaviour) from now on.
The child takes a cue from the people they most trust and depend on in how they see the world and their place in it, and – although it may take time and patience, depending on the history – it is never too late to redress past mistakes and establish a positive foundation for the child to grow into their best potential.
