Being an autistic advocate by profession, a former teacher of autistic students, and stepfather to a disabled autistic teenage girl (and of course, being a former autistic child myself), a lot of people ask me for advice on how to help an autistic young person grow up to be the best they can be.
My advice differs depending on one important bit of context: which autistic young person are we talking about?
The autistic experience varies enormously, which makes it difficult to share generalised insights about helping autistic children. But here are some insights I believe apply to the widest possible range. You are welcome to accept, discard or adapt pieces of advice as you see fit, as you know your child best, but here are my insights for what they’re worth.
1. Self-perception is everything
Truthfully I could write this whole article about the importance of having a positive self-perception. Your opinion about yourself means a hell of a lot.
Unfortunately, self-perception is so often a huge issue for autistic children. After all, we learn from a very early age that ‘different’ is supposed to be ‘inferior’ (for example, if 29 kids in the class learn one way and the 30th learns in a different way, the 30th is probably stupid, right?). And given autistic children’s frequent struggles with fitting in to an education system – and a wider world – that has been built with everyone else in mind, all too common they are made to feel like they are ‘faulty’, and not the people who they’re apparently supposed to be.
Frankly, public perception of autism doesn’t help very much with this issue either.
So what can parents do about this? Well as much as the wider world is beyond our control, you can certainly make your home the place where your child knows without doubt that they never have to feel inferior. Where they are able to celebrate their authentic self, define themselves by their strengths, and be surrounded by people who appreciate their autistic identity rather than try to change it.
On a similar note:
2. Compliance ‘therapies’ cause more problems than they solve
Behavioural interventions such as Applied Behavioural Analysis (ABA) are threatening to gain ground in Australia. Seen as the gold star ‘treatment’ for autistic children, ABA is widely condemned by autistic adults, many of whom have endured it themselves.
Regardless of the assurance that ‘this is the best option for your child to thrive,’ and other emotionally compelling arguments that may be thrown at a parent worried for their child’s future, at its very core any intervention that seeks to eliminate autistic behaviours is akin to trying to train a cat to act like a dog. (Incidentally, ABA was fathered by Ole Ivar Lovaas, who also fathered gay conversion therapy. Autistic conversion therapy follows the same principles.)
So what interventions should be sought instead if your child needs them? Autism-friendly support such as occupational therapy and play therapy are good ideas – essentially, any therapy that is willing to meet the child where they are and help them to become the best autistic child they can be, rather than train them to become a non-autistic version of themselves.
As an educator, I also have enormous safeguarding concerns when it comes to interventions that rely on compliance. To summarise, here’s a picture I made for Autistic Not Weird’s Facebook page.
Point number three is essentially the opposite of traditional ABA:
3. Encourage self-advocacy
As with a lot of advice intended for autistic children, this applies to non-autistic children too. However, it applies disproportionally to those who are underestimated by others. And especially to those who have learning difficulties, or those who have been accustomed to adults doing things for them.
One case that has stuck with me was a student who had just started at a former school of mine, who (at the age of fifteen) went through half of her first English lesson without doing any work, because she was waiting for an adult to take her equipment out of her pencil case. After all, this had happened throughout ten years of schooling. In her experience, it was what adults needed to do before she was able to work!
Self-advocacy opportunities are everywhere. They happen when a child suggests an idea to an adult. They happen when a child takes responsibility over something ‘small’ (although it won’t be small to them). They happen when a child says “no”.
And taking these opportunities sometimes involves allowing them to take the lead even if it’s inconvenient. I remember a friend of mine trying to get her autistic son with speech difficulties ready for a trip to the store, and was shocked when he said – with perfect grammar and clarity, and for the very first time – “I don’t want to go to the store. I want to stay at home please.” And yep, you’re damned right she cancelled the shopping trip so he could stay at home. He needed to learn that his words mattered.
4. Reward systems are overrated
Grown-ups are often very quick to recommend things like ‘behaviour charts’ to visually represent how closely a child is meeting the expectations of those around them (or how badly they’re failing to meet those expectations). They’re encouraged to be readily visible on the walls of the classroom or even living room.
But… have you noticed how these behaviour charts never appear in adults’ workplaces?
Whereas I’m not making an argument that children should be treated the same as adults (which wouldn’t be developmentally appropriate), it is quite revealing that adults are happy to hold children to obedience-based standards in a very direct way that they wouldn’t dream of applying to each other. And it’s worth asking why: because honestly, I doubt the answers you’ll hear would be anything to do with a child’s neurological development, and more along the lines of “they’re kids, so they should always obey adults in authority”.
Given the previous point about encouraging self-advocacy, you’ve probably guessed my opinions on that. But it goes beyond the topic of autonomy: reward-based systems naturally teach children that good things must be earned through obedience, rather than shared out of kindness.
Rewarding children for demonstrating good character is a great thing of course: if a child goes above and beyond to help another person then they should rightly be rewarded for it. But just like I said in point #2, reliance on compliance does not build good character.
5. Presume competence
These are words you’ll often hear in the disability community, largely because people with learning difficulties find themselves being woefully underestimated.
When I deliver staff training in schools, I always advise teaching staff to be wary of ‘self-fulfilling prophecies’: that if you assume a young person will be incapable, you become one of the causes of it. As illustrated in another picture I made:
(And this can impact our behaviour even in times we don’t realise – the girl I mentioned earlier had been surrounded by adults who must have known she was capable up unpacking her own equipment, but their behaviour was a symptom of their underlying belief in her lack of capability.)
As much as is possible, always assume your child can do something. And in the cases where they clearly can’t, always assume it’s something they can’t do yet.
6. Patience matters
This follows neatly from the previous point, in that autistic children will often take more time than others to do the things they are capable of.
The most obvious example is speech. A friend of mine once said he recommends the “eight second rule” when talking to autistic people (with or without a speech delay) – as in, when you ask them a question, give them at least eight seconds to answer. It sounds quite reasonable, right?
Well, take a moment right now to count to eight.
It was a long time, wasn’t it? And so often, adults will assume after five seconds that an autistic child is wilfully ignoring them (or doesn’t know the answer), when their brains were still processing the response in their head. Give them the extra time, and their older selves will thank you for it. (And if they know from experience that you’ll offer them the extra time, that in itself takes the pressure off and may even enable them to take less time!)
7. You’re (almost certainly) doing better than you give yourself credit for
The default setting of any parent is either ‘worry’ or ‘guilt’.
And this is especially the case when the child has additional or complex needs. Unwarranted parent guilt is a huge factor (and here in the UK, the authorities thrive on it – it’s so easy to parent-blame when the parent feels worried about whether they’re doing right by their child).
The thing is, the guilt isn’t widely discussed. The idealistic vision of parenting is like the families you see in holiday adverts, where everyone’s smiling all the time, the family never argues, and nobody has any obvious needs to be met. (And let’s be honest, when did you last see a child with complex learning difficulties in a holiday advert?)
And because it’s not widely discussed in society, parents who are worried about whether they’re ‘failing’ their autistic children often feel even more isolated as a result. But frankly, I worry far less about those parents than I do about parents who stubbornly believe that they’re automatically getting everything right.
Basically, you are not alone. And you’re doing better than you think.
I hope these insights help, even if just a bit. You’re more than welcome to join Autistic Not Weird’s various social media communities or take a look at my website for more. In the meantime, all the best to you and your children!
Chris Bonnello – Autistic Not Weird