To parents of autistic children

Dear Parents of autistic children,

I am tired. I am tired of having pointless conversations with you. They’re pointless because within the first few minutes, I can predict the direction in which the conversation will go.

Rarely, the conversation goes in a positive direction. To those parents, I want to say thank you. Thank you for setting aside your feelings, and being willing to listen. Thank you for doing that because your child will grow up feeling loved and accepted, and that is so important.

Unfortunately, far more often, the conversation does not go in a positive direction. I write this letter to those parents.

I’ve been where you are. It was a brief snapshot in time. For a month or two after my son was identified as autistic, I felt hopeless. I sought out other parents of autistic children. I could have easily fallen into the endless void that is is toxic support groups except I didn’t. I didn’t because I looked around me and I noticed that while I was feeling hopeless because my son would have a harder life, most of the other parents were feeling hopeless because they felt that they were having the harder life.

When I noticed that, I found the path to acceptance, and the courage to finally come to terms with my own neurology. That path – the one to acceptance – is still there. You can find it too.

If you want to find it, then you can’t continue to focus solely on your own hardship. You can’t participate in the hardship olympics every time you encounter a member of the autistic communities. Your life is unique, but you can’t use that uniqueness to try to outdo everyone else by telling us how your life is so much harder. When you do that, we know that you’re so focused on your own hardship that you haven’t stopped to think about your child’s.

We laugh about you. We joke about martyr parent tears, and we make up bingo cards to see how many of the commonly used arguments you will fall back on. You never disappoint. We always get bingo.

We laugh because the alternative is to cry. It’s heartbreaking. It’s heartbreaking knowing that you have a child like us, and you’re so focused on your own hardship that you have forgotten that your child needs love, acceptance and support.

You say conflicting things about labels. You say that we’re not labels, but our label is exactly the thing that helped us find our communities. It was the thing that empowered us. It was the thing about us that connected us to others like us. We’re not ashamed of our label, but we feel the effects that your shame in saying the word (say it: Autistic) has. Those effects are more wide-reaching that you realise.

We have set up communities for you to learn. There’s Parenting Autistic Children with Love and Acceptance, Respectfully Connected, and We Are Like Your Child. Autistic people visit those pages to see how we can help your children. There’s also hundreds of bloggers. We want to help your children. We want you to hear us when we tell you that there is a different way.

But you don’t want that. You don’t want to listen to us, or change the way you do anything; you want support as a martyr parent. It doesn’t matter how many times we try and explain that if your child’s needs are met, then your hardship would diminish considerably. I’m not promising it will all magically disappear. Parenting is hard, but the hard parts have less to do with anyone’s neurology and far more to do with the fact that the relationship is between an adult and a child who is still developing so many skills.

You tell us we’re not like your child. Some of us once were, and some of us still are. We may even be more like your child then you’ll ever be.

You tell us that we don’t understand real autism. This mostly comes from non-autistic parents which is vaguely amusing. I know you’re talking about self-care and independence. You have an unusual fascination for the toileting behaviour of others. You want to yell at how your young child will never do [insert whichever measure of successful adulting you choose here].

We’re autistic. We know a lot more about being autistic than you ever will. Some of us may even understand ‘real autism’ better than you do. Some of us speak with mouth parts; some of us don’t. Some of us need more support with self-care activities; some of us don’t. The point is though that when you say those things, you have no idea what being autistic means for the person you’re directing it to. You have no idea whether they have reached your magical measure of successful adulting or not.

That path to acceptance is still available to you. It’s there and we’re still waiting.

Of course, you can choose to continue down your own path where people will listen to your tales of hardship and give you all the sympathy and attention you can handle. If you do that, we’ll still be waiting, but we won’t be waiting for you because we know that there is a certain point on the path where there’s no turning back.

We’ll be waiting for your children to find us when they reach adulthood. We’ll do our best to help your children heal, just as many that came before us have helped us heal, but there’s never a guarantee that we will be successful.

We would prefer not to have to do that though. We would prefer that you take that first path of acceptance so that your child doesn’t need our help to heal when they are older.

Sincerely,

Me