Telling your child that they are autistic. Part 2: How and When.
Last post we discussed the ‘why’, this time we’re going to delve into one way of executing the ‘how’ and also sneak in the ‘when’ as well.
Question: How do I tell my child?
The following is a 5 step process based on Stephen Shore’s model, found in his book, Understanding autism for dummies. At least, I assume it’s there – I attended a conference where he gave this outline and then mention his book, so feel free to correct me if I’m wrong. I plan to read his book one day. I’ve added in a few thoughts of my own to what he said.
Step 0. Preparation. Talk about autism in general terms in the house. Make it very positive, for example comment on how ‘this person’ is autistic and they’re good at x. Normalise the term so they’ll have something to draw upon when the time comes.
Step 1. Self-determination (ie. what does autism mean to, and for, me). Build a sense of self-awareness of their strengths and challenges. Discuss what they’re good at and what they struggle with. Figure out their sensory, cognitive, and socio-emotional preferences and chat to them about it.
Two pieces of advice:
Don’t use the word autism yet!
Don’t use the word ‘weakness’ because it’s a static word, you can’t do anything with it. Talk about their challenges – this allows potential to overcome.
Step 2. List their strengths and challenges and start figuring out how they can be overcome or accommodated by either using their own strengths or by asking for help/changes.
Step 3. Make specific, non-judgemental comparisons of these characteristics in others and think of potential role models they might emulate.
Step 4. Now it’s time to link their strengths and challenges within the framework of autism. The label is merely used to tie up the bundle of what your child already knows about themselves. Don’t let autism define them, let them define their autism. Each autistic person is unique in their profile. If you present the label first and then discuss their strengths and challenges it may cause fear and influence their thinking.
Their understanding of what autism is and what it means to, and for, them (self-determination) may take very little time, or it may take a few years. This is ok. They’ll work it out when they’re ready.
Please note: don’t make autism into some kind of superpower. It’s not. (If you want to know why I say this, please check out my blog post ‘Should we feel autism pride?’.) I would hope that you would also avoid language that includes the words, ‘incurable disease’, ‘deficient’, or ‘reject’. This is also a lie. Be as honest as you can be with them. All people have strengths and challenges, autistic people just tend to be more extreme because they are wired this way. They are not wired worse, or better, just differently.
Question: When do I tell my child?
If you’ve already told them that they’re autistic but in a very different way than described, don’t worry! According to Shore’s model I did it completely backwards with my son yet now he’s 10, has embraced his autism and is an active participant in his development. My 5 step process probably looked more like:
Step 0. Autism is bad and only produces challenges (suffice to say that I had a very different understanding of autism back then!) Talk about autism around him, never actually hide the fact that he’s autism but don’t specifically tell him.
Step 1. When he is about 6, tell him he is autistic. Do it in an off-hand manner, almost like saying, ‘Did you know your eyes are brown?’ Tell him not because he was curious or needed to know or felt he was different in some way, but because now was as good a time as any.
Step 2. Start to re-think how I view autism and allow this to impact my language and our discussions. Move from a challenged-based view to a strength-based one. Tell him that, just like everyone else in the world, he has strengths and challenges. Tell him what these are. Homeschool him to enable him to thrive and discover these strengths in a positive environment.
Step 3. Encourage him to own his autism and self-advocate.
Step 4. Tell him I’m autistic as well and that there are many other autistic role models he can look up to.
As you can see I did it totally backward, yet it worked! He still has a long way to go but has really strong self-determination. If you’re already a few steps in on your own model then your child is not beyond hope. Switch to a strengths-based view of autism and allow this to influence your language in positive (but honest) ways and help your child re-frame what you’ve already told them.
If, on the other hand, you’re yet to do anything towards enlightening your child, then regardless of what age they are start steps 0-3 now of Shore’s model. Step 4 comes when:
they start noticing differences, or
you think they are mature enough and that it is necessary for their development.
A general rule is the younger they are the better they can handle and adapt to the idea that they are wired differently, so try to get in before the teenage years hit. You want to empower them with this knowledge, enable them to fully participate in their self-development, as well as be able to self-advocate during these tough years. Knowledge is power!
If you’ve missed that window then it’s up to you whether you think it may help or hinder them to know. Having said this, if you run through the steps properly and present it from a strengths-based perspective then they should take it reasonably well whatever age they’re at and will have only minimal issue incorporating it into their self-perception. If they don’t, then blame Stephen, this is his idea!
So we’re looked at the ‘why’, the ‘how’ and the ‘when’, now let’s turn to the ‘but what ifs’. Hold onto your hats and let’s work it out together in Part 3: ‘But…’.