Every one of us has a version of the ideal world, and a corresponding appreciation of the many ways in which it doesn’t measure up to reality. We fight to change the world to better match our ideal version – we protest, propose law changes, change minds and walk the walk – but so do the people who have opposing versions of the ideal world. Politics is a version of these competing ideals at war. Politics are at play in the autism world too; we also carry around conflicting ideals and fight tooth and nail to make the world better match those ideals.
Around Autism Awareness Month each year (April), the details of these ideals often get shoved aside so we can try to put on a united front to make a better world for autistic people. But take a look around, does everyone embrace the puzzle piece, the “Light it up Blue campaign,” the message that autism is a growing tragedy or something beautiful and wonderful? No; I see just as much – if not more – division during Autism Awareness Month as at any other time of the year in the autism community. (And I’m OK with that diversity, I think it’s healthy and honest.)
But here’s the thing then: You can’t embrace some ideal version of what you want the world to be like for autistic people, and then simply raise your child to fit into that ideal, because there are no promises your version of the ideal world is the one that’s going to win out, or that it will win out in the next year or decade or century. For me at least, I’m not going to sacrifice my son’s future to the unknown; I’m going to help him to make his way in the world as it currently exists, whilst continuing the fight to make it my version of “something better.”
The world as it currently exists has social expectations in a variety of situations, and not meeting those expectations has a variety of consequences. Whether you want to find friendship, or love, or get a job, your chances of success – and your options to choose your own version of success and happiness – are much higher when you can figure out what is expected of you and are at least able to choose to meet those expectations. This isn’t about “conformity,” it’s about choice and freedom and removing limitations. If someone chooses to behave a certain way and say certain words, that is one thing, but if no one ever gave them the choice because no one taught them the rules or the expected behaviours, that is something entirely different.
(I’m currently reading a book written by two successful autistic adults, which has made me better realise this truth; I’ll be reviewing the book in a future post, suffice to say for now that it’s strengthened my views about what I am obligated to teach my child in terms of social rules and expectations.)
As a parent of an autistic child, you’re supposedly not meant to help your child “conform” or “fit in.” If you talk about such aspirations out loud, you are painting a target on your back. People turn your words and hopes against you, and insist what you’re trying to do is hurt or abuse or change your child in some fundamental sense. Well I call bull on that, because of choice: Because I am granting my child the ability to define himself and choose his own behaviours. I am opening doors for him; he gets to choose which one to go through. I am not fighting who he is, anymore than forced to do maths and sports and art at school was fighting who I was. Our job as parents, as teachers, is to prepare children – whatever their neurology – for the world that actually exists, not just the one we wish existed.
Our choices are hard sometimes; such as when to try to change or modify a socially inappropriate stim, that might be isolating the child or targeting them for bullies, but nevertheless serves some meaningful function for the child. But those are still choices we have to make; we weigh-up the options and decide what is in the best interests for that child in that culture, in that country, at that time. We can’t make these decisions in isolation of reality (or rather, we can, but it’s unlikely then to be genuinely in the child’s best future interests).
So no, I’m not waiting on the world to change. I look around me and I see what skills and knowledge my son needs to do well in life, and I am giving them to him, in the most loving and compassionate ways that I can. I never stop learning about him, or his autism, or autism more generally, but I also never lose sight of the fact that it is my responsibility to prepare him for reality. I’ll keep fighting to raise awareness, and acceptance, and to make the world an easier place for him to be; there’s no dichotomy there: it’s all just part of helping him towards happiness and success. And if my son’s happiness and competence is anything to go by, I must be doing something right.