Telling your child that they are autistic. Part 1: Why.

Should I tell my child they’re autistic?

If I do tell them, how do I tell them, and when’s the best time?

But ‘autism’ is a label, what if they grow out of it and are branded for life?

These are common questions from concerned, loving parents who want the best for their child but have no idea what ‘best’ is and how to go about it. Perhaps this is you too? Personally I’m of the opinion, and I’m yet to find any adult autistics who would disagree with me (though there’s sure to be some out there), that you should always tell your child if they’re autistic. Over this series, let me walk you through some answers to those familiar questions posed above.

Question: Why should I tell them?

            Picture the child who everyone’s laughing at but they don’t know why, or the one that cannot understand how come they don’t seem to be very good at this friendship thing. Perhaps they know they’re strange (they’re told often enough!) but don’t really know why or what they can do about it, or even what’s wrong with being different. They want to say things and do things but know it’s ‘against the rules’, rules they’ve learned the hard way and over a long period of time by people mocking them. They can’t seem to figure out how to fit in so instead they often seek to avoid this negative attention by all manner of negative solutions.

            This child’s internal voice is telling them that they are defected somehow… a loser, stupid, not deserving of any friends. They themselves are the problem. Logical, right? And why shouldn’t they think this? What else do they have to replace it with?

            This was my experience. I spent years thinking that I was deficient in some way and battled anxiety and depression as a result. Since being diagnosed as an adult I have heard this same testimony from practically every other adult in the same situation. ‘If only I had known what I know now, my life would be so different.’ ‘I might not have struggled so much.’ ‘It wasn’t my fault after all!’

You want your child to have a different internal narrative

            I’m glad my 10 year old son knows that he is autistic because he knows both the challenges that he is faced with, but more importantly that he has some amazing strengths that will help him overcome them. This internal narrative means he has excellent self-esteem. He knows that his brain is different and that it makes life a bit harder sometimes. We discuss things he wants to get better at and how he can get better at them. We talk about therapy and why he is attending it. For example, he knows that he struggles socially and this is why he goes to a social skills group. Since having that chat he is far more enthusiastic about attending this group and improving in his ability to be a friend.

            My son isn’t growing up and struggling with self-esteem issues, depression and anxiety, like so many late-diagnosed autistics, and for that I am truly grateful.

You want your child to understand what they need and partner with you in seeking it

            I am excited because my son is actively overcoming his challenges, and actively noticing his strengths. Better yet, as he is doing this, he is starting to understand his needs better. I ask him if he feels anything needs to change in therapy or if he would like to take it in a different direction. We have honest, open discussions and he knows that I will listen to him and seriously consider his opinion. Last year his speech therapist said that he really wanted to read better so he can become an engineer, therefore they were practising reading. This was great! I commented about this to my son, asking how he felt his sessions were going now that they are doing more reading. He said he struggled with the books and they were too hard and so he didn’t want to read in his therapy sessions anymore. My response was that we would come up with a plan, and it would be our plan, not the therapist’s. I suggested that he needed to practise reading easier books to gain fluency, so how about each week he chooses one of his easier readers to take and read and we would tell his therapist that this was our plan – how did he feel about this? Immediately he was on-board and enthusiastic.

            To be honest, this plan didn’t actually last very long when I quickly realised how much money we were paying a qualified speechie to sit and listen to my son read when someone else could do it for free! So I mentioned to him that we were going to have to come up with another idea to improve his reading fluency. Once more we had a brainstorm and most nights he now reads to my husband while I cook tea. He’s happy that he’s working towards achieving his goal, and it’s something he and his Dad enjoy doing together.

You want your child to self-advocate

            Whatever age they are, you want to prepare your child for self-advocacy later on. We want them to become productive and engaged citizens of society and self-advocacy is part of this. Self-advocacy is the ability to speak-up for yourself and the things that are important to you. Self-advocacy means you are able to ask for what you need and want and tell people about your thoughts and feelings. Your child is the best person to speak up for themselves. But they won’t be able to do this effectively if they don’t know where their strengths and challenges lie.

            Essentially, you want them to move from partnering with you as advocates on their behalf (as in, you are the primary and they are the secondary), to advocating for themselves (you supporting them and gradually withdrawing from the picture unless needed). It’s never too early to train a child to self-advocate though obviously you’ll need clear boundaries (the terms ‘entitled brat’ comes to mind, as well as ‘indecisive’, ‘bossy’, and ‘I think my child is confused as to who is the adult in this relationship’). Exercise wisdom about this: you’re still the parent.

            Soon after working out speech therapy goals with my son he asked, ‘I’d like to know her plan for each session’. He wanted his therapist to go through at the beginning of each session her plan for what they would do. Surprisingly, this was something that had never occurred to me and I said that we would ask at the next session if this could be incorporated. My son is self-advocating! Baby steps…

I hope this helps answer why you should tell your child that they are autistic. As your child grows older it may become harder and harder for them to live in this world without adjustments and support – chances are they will outgrow their coping mechanisms and strategies and replace them with unhealthy ones if you’re not guiding them to better understand who they are, why they are, what they need and how to obtain it. It’s also going to be more difficult to send them along to therapy or appointments without telling them the reason why, and if they’re like most teens, rebellion is just around the corner!

This is part 1 of a 3 part series. Part 2 addresses the question of how to tell your children they’re autistic, so if you’re keen to know the answer, keep reading (but on a different page … somewhere else).