A letter to autism mums, from an autistic adult

There are sometimes tensions within the autism community between autistic adults and parents of autistic children. Here, Phoebe Lupton offers a bridge of understanding and advice.

Dear autism mums,

Whether your child has had their diagnosis for ten years or ten days, you may still be experiencing a complicated mix of emotions. You may feel grateful that your child has a diagnosis to begin with, that all their quirks and challenges can be explained. You may feel fearful that your child will never reach their potential in society. You may feel angry with adult autistic advocates like myself who preach the acceptance of neurodiversity, because you believe that your child is too different from us to be considered part of the same community.

Whatever your feelings may be about your child’s neurotype, they’re all valid. It’s hard to be a mother, let alone the mother of a child whose brain works differently from yours.

I was once like your child: exhibiting confusing, perhaps troubling behaviours that don’t have an easy fix. My mother was like you: unsure of how to help her child, experiencing sustained feelings of helplessness.

Image: Phoebe aged two, with her mum

To this end, please allow me to offer you some words of reassurance.

Firstly, give yourself a break! If you’re reading this, you probably love and care deeply about your child. You want to advocate for them and be their companion as they navigate a world that isn’t always kind to people who are different. You’re doing an amazing job.

I’d suggest you stop what you’re doing right now and take a deep breath in and out. You may not get much of a chance to breathe these days. If at all possible, go and make yourself a cup of tea/coffee/hot chocolate/matcha and sip it slowly as you think about everything you love about your child. I’ll bet that you can come up with a lot.

Secondly, I’m sorry. I’m sorry if this world has brainwashed you into thinking that your child is inferior to neurotypical children.

When children are identified as autistic, their parents are often met with a barrage of ignorance. While talking about your child with professionals, family members and strangers alike, you may have heard something along the lines of this:

“You must enrol your child in hours upon hours of therapy a week, otherwise they’re doomed to be a failure.��

 Or this:

 “You poor thing, I can’t imagine how awful it must be to have a child like yours.”

 Or even this:

 “What did you do to make your child like this?”

I know that my mum has been told something similar to that last one. I know how pervasive these narratives are, so pervasive that you may have started to believe them. But you know your child the best. You know that they have challenges, but you also know that they have gifts and passions and the capacity for joy, just like other children. Your child is greater than what ableism makes them out to be.

Finally, there is hope out there. Your child will never be neurotypical, not even if they do all the hours of all the therapies. Maybe that’s not such a bad thing.

Learn from autistic adults! Many of us have suffered from the same ableism that your child may be suffering from, but we’ve made it out the other side.

Some autism mums find adult autistic advocates difficult to listen to. They see our successes in the workforce, relationships and self-esteem, and they say, ‘But my child isn’t going to be like you.’ I acknowledge that some of these successes may be due to our privilege in other areas, like race, class or gender. But when you see an autistic adult, you see a survivor. Remember that your child can survive, too.

Remember that your child has hope, because they have you. As hard as it was for my mum to bring me up, her love for me never wavered. She nurtured my strengths as well as helping me through my struggles, and she’s the reason I’m the survivor I am.

You and your child deserve the world.

Love and solidarity,

An autistic adult.