Raising an autistic child

If you have been lucky enough to love a person who lives with autism, you already know the thing no one warns you about. It is not the hard parts. They warn you about those early and often. It is the joy.

At the start they hand you the pamphlets and the waitlists and the words. Delay. Deficit. Disorder. They describe your child as a list of things that did not arrive on schedule, and no one in that room ever thinks to mention that you are about to meet the happiest person you know. There is a kind of joy a person who lives with autism can feel that most of us lost track of a long time ago. A whole-body yes. The hands going, the whole self lit up over the thing that lights them up, none of it made smaller to fit the room. A writer named Julia Bascom calls it the obsessive joy of autism, and the first time I read her, I cried, because she had put words to something I get to watch and most people never will. The rest of us learned young to clap politely and keep our excitement a reasonable size. The person you love never agreed to that. Watching them is like getting back a piece of yourself you forgot you were allowed to have.

I used to work inside the deficit model, the one that looks at a child and starts with what is wrong, what is missing, what is behind. I left it. I could not keep starting from broken, not in my work and not in my house. When you actually live next to a person who lives with autism, you learn fast that the behaviour everyone wants to fix is almost always saying something. The hard moment in the middle of the store is not defiance. It is a nervous system that ran out of room. The lining up, the repeating, the one subject they can tell you everything about, that is not a symptom to manage. It is a way in. Go in through it and they will meet you there.

You learn, too, to trust that there is a whole person in there. Always. Whether or not the words come out the way the world wants them to. A man named Naoki Higashida wrote a whole book by pointing at letters one at a time, because his mouth would not do what his heart was already saying. Inside all that quiet the world had written off was a boy who felt everything, who asked us please not to give up on him. Words not coming has never once meant no one is home. You already know that, if you love someone on the spectrum. You have looked at their face and seen how much is in there.

Once you stop looking for what is missing, you start noticing what is actually there, and there is a lot. Honesty, for one, the kind most grown adults gave up years ago. A person who lives with autism will usually tell you the true thing instead of the polite thing, and after a lifetime of people performing fine at each other, you might find it is the most restful company you have ever had. You always know where you stand. There is often a strong sense of fairness, a feel for what is not right that does not quietly switch off to keep the peace the way the rest of us were taught to. There is the focus, the way they can pour their whole self into a thing and go further into it than anyone around them, until they know it better than the experts. There is the noticing, the detail everyone else walked past, the small thing the rest of us stopped seeing a long time ago. The one I think about most is the freedom, because it is the exact thing my other clients come in aching for. The person you love is not spending their days performing an acceptable version of themselves for the room. They are just themselves. Most of us spend years, and sometimes a good therapist, trying to get back to that. They never left it.

What they teach you, if you let them, is a different language of love. Not the one printed on the cards. Sometimes love is sitting near you instead of on you. Sometimes it is being handed the one thing that makes them feel safe, the most important thing they own, put right in your hands. You learn to be calm instead of acting calm, because they can feel the difference before you have even finished faking it, and they steady themselves off you. You become the safe place they come back to. I am not sure people understand what an honour that is.

I will not pretend the road is not hard, or that I know your exact version of it, because I do not. Yours has its own weather. I have loved a child through assessments and waitlists and rooms that were never built with our families in mind, and I know the tired that comes from holding a whole family in your head while no one is holding yours. So here is the thing you almost never get told: you were never meant to carry this without being held too. Temple Grandin's mother told her, her whole life, that she was different, not less. I need you to hear that it was never once about less. Not for your child, and not for you.

If you read this with a lump in your throat because it is your life, that is worth paying attention to. You spend your days being the strong one, the translator, the one who fills in everyone else's boxes. A free 15-minute consult is one small place where no one hands you a form and no one needs you to hold anything up. You come as you are, and I listen.