At least once a week, for the past five years, well-meaning friends have sent me a “success story” about a child or adult with autism. I also often read similar stories in the media. They are always inspiring, with their descriptions of how people don’t let autism define them or hold them back. With each story, I’ve grown sadder and angrier.

Seeing autism presented at all in the mainstream media is incredible, but it’s always the shiny side: a child is a musical genius or, after many years of setbacks, an adult has completed a law degree. While these are things to be celebrated, it makes it even harder for families like mine to be accepted in public. It makes the “Oh, he’s autistic” explanation sound like an excuse, because people haven’t seen the other side of the spectrum.

They haven’t seen the child who is nonverbal, who doesn’t understand a word you say, who screams and growls for hours on end, the child who needs locks on all the doors and windows, and still needs a pram and reins if we attempt to go outside. They haven’t seen the child who attacks his or her parents and loved ones on a daily basis – because there’s been a slight change in their routine and they can’t find a way to process it.

We have both ends of the spectrum in our house; each comes with its challenges and delights. We love our children unconditionally, but we’re isolated, alone and often excluded from so-called “autism-friendly sessions” at play places. They just don’t cater to the autism that we know. Their version of accessible is to dim the lights a bit and lower the music when they play games. Our version would be to have no escape routes and a maximum of three other children present.

We realise that businesses can’t cater for these requirements, but nothing makes us feel more alone than reading about “autism-friendly” places and knowing that they are still not suitable for us. I believe that if the other end of the spectrum were depicted more honestly, the world would adapt and try new things.

For once I’d love to see a story that celebrated a child managing to say “drink”, rather than screaming for two hours. That’s our idea of success.

For now, we feel like a tiny voice in a crowd of millions of happier people.

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