My life with autistic twins: 'Your family is cracking, but through the cracks comes light'

They were identical boys born at 34 weeks and you named them Tommy and Henry. They were so tiny and fragile and so covered in wires that you were afraid to touch them in case they broke.

And then they came home and started to grow and were happy little things who ate well and slept even better, and you breathed a sigh of relief and thought the hard part was over.

They turn one, and then two, and you think one is trying to say “mama” but you’re not sure.

They are looked at by doctors but you are told there is nothing to worry about. But now they are three, and now four, and there are only a few words and something just doesn’t feel right.

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So now there’s a room and so many faces and names and clipboards and the diagnosis is given on-the-spot: autism spectrum disorder.

There is meeting after meeting with specialists and therapists and at each one they talk about Greta Thunberg and Steve Jobs and famous artists and Silicone Valley success stories, but all you think about is whether Greta or Steve or anyone else was happy and treated with kindness.

People love to use buzzwords when it comes to autism. Creative thinkers! Little geniuses! Superheroes! You know they mean well but sometimes you just want someone to say “Yes, it’s all a bit horrible for you, isn’t it” and for your boys to go a day without hitting themselves over the head.

“Our life is basically divided into 10-minute blocks now,” your husband says that night over the sound of wailing cries and toys being thrown across the room. You nod and keep folding laundry.

The are lots of bad moments. You take your eldest son, six, to see Santa and later look at the photo, the two empty spaces where his little brothers should be sitting.

That same boy will later scream with frustration into your chest as he cries and asks why his brothers won’t stop wrecking his stuff. “It’s not fair,” he sobs and you think that no truer words have ever been spoken.

A lot of the sadness comes from moments that will never exist. At least not for now. No bedtime stories and snuggles. No “I love you, Mummy”. No trips to the shops for an ice-cream treat; no family holidays or camping trips. Home is your sanctuary and your prison.

One report noted that as you and your husband cried in the assessment room one twin appeared not to notice. That will stay with you forever.

There are moments of visceral anger, too. You read the National Autistic Society reports that 28% of autistic people have been asked to leave a public space because of behaviours associated with being autistic and your heart breaks.

You log on to Twitter and there’s Karen complaining about kids crying on planes and kids using iPads and kids making noise in cafes and that’s your beautiful little boys they are talking about.

You read that people reckon the Australian prime minister, Scott Morrison, is autistic because he was so uncaring towards bushfire victims, and then see Tommy wipe tears from Henry’s face after he falls and hurts himself and wonder how people can get being a dickhead and autistic so mixed up.

Your family feels like it is cracking, but through the cracks comes the light.

The twins begin speech and language therapy and slowly the words trickle out.

One day out of nowhere Tommy says “Hi Mummy” and it’s the most beautiful sound you’ve ever heard. A friend gives them a toy tea set and Henry has a brief but spirited tea party with you and his toy dinosaurs. Big brother Charlie starts to build his little brothers toy trailers out of his prized blocked collection for them to play with. There are fewer heads banging against walls and floors, fewer meltdowns, and professionals are called in to prepare them for school.

You realise the world is filled with people who are kind and understanding towards autistic children. The neighbour who drops around dinner without being asked. The work colleague who tells you the best and most interesting people are neuro-diverse anyway. The local supermarket worker who sweeps you up in a big hug on a bad day and whispers: “It will all be OK, you know.”

Now your village is speech and language therapists, social workers, occupational therapists and psychologists. They stop talking about Steve Jobs and Greta Thunberg and instead tell you that yes, it will get better. That’s all you need to hear.

You learn the Maori word for autism is “takiwatanga”. It means “in their own space and time”. Tommy and Henry’s paediatrician tells you it’s his favourite word in the whole world. You agree with him.

• Angela Cuming is a journalist and writer based in New Zealand