10 ways to help the parent of a child with autism

My newborn didn’t cry. Instead she peered, owl-like, at her new environment. Instantly, I fell in love. She was adorable, her face and shoulders were covered in down-like peach fuzz. Her blue eyes were almond shaped and her mouth was tiny. Over the next few days in hospital, while I recovered from a caesarean, various professionals came in and out. I well remember the third evening. I was forcing my tired eyes to read a novel that I had been enjoying before Daisy’s birth. Along came the junior registrar, hovering over my sleeping baby’s cot, his furrowed brow far easier to read than my book. “Is there something wrong?” I asked eventually.

“This baby isn’t normal,” he answered. “I think there is some kind of a syndrome.”

“Down’s syndrome?” I asked. In those days, I only knew of one syndrome.

“Yes, or something similar. The muscle tone seems to be low, and the feet are too small. See?”

I felt as if I had been dropped into a dark hole. It was lonely in there. A thousand questions bubbled inside me, but the registrar had disappeared. I wanted to talk to my husband. Instead, I scooped up Daisy and examined my sleeping daughter. Whatever the future held, I knew we were in it together.

Looking back, I realise that, even if the brutal news that Daisy was “not normal” had been given while my husband was there to support me, the question that was closest to my heart could not have been answered by anyone. “What will life be like now?”

Daisy’s official diagnosis, Kabuki syndrome, came via geneticists when she was 12 months old. Symptoms vary from person to person, but for Daisy it involved low muscle tone, joint hypermobility and severe learning disability. By the time we were given the full diagnosis, I was pregnant with my third child, who would complete our family.

From birth, Lenny clearly wasn’t disabled in the way that Daisy was. He was noticeably muscular and very strong. Intensely interested in his environment, Lenny was almost too able for his own good. His one true love, Mother Nature, called him constantly; he outfoxed any security system that we put in place to stop him getting outside. But despite his physical ingenuity, he didn’t talk. And he didn’t point at things that interested him or play with action figures. Instead, he would spin the wheels of toy cars, staring at the spokes as they whizzed around.

At three, Lenny was diagnosed with classic autism and I had to tell my eldest daughter, Rosie, then seven, that she had not one but two disabled siblings. Rosie was bright, academic and inquisitive; I had noticed that she was a bit different from her peers, but had put that down to her being an old soul who liked adult company. But she was struggling socially at school and, at the age of nine, she was diagnosed with Asperger syndrome .

There was a period of retreat while I processed the fact that all three children had challenges. Eventually, though, I braved the world. We attracted curious stares everywhere we went: Lenny wanted only to perch on adult shoulders or run off at dazzling speed, Daisy needed a specialist pushchair, and Rosie dressed bizarrely and would often appear to be in her own imaginary world. I learned to transform strangers’ curiosity into an opportunity to share information and make friends. If their directness left me lost for words, I could rely on Rosie. She was funny, quick-witted and loved to chat: “Daisy doesn’t walk yet because she has Kabuki syndrome. It doesn’t matter though, because she is beautiful as an angel. And this is my brother Len-Lens – he has classic autism, which means he is brilliant at spinning.”

I have learned so much in my two decades of being a mother. My children have been my best teachers, especially Rosie, who can often offer insight into what her younger siblings are feeling but cannot say. I wish there had been a wise friend to support me in those early days.

So, if you know someone who has a child with autism, here are 10 ways you can help: 

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