What not to say to a parent of an autistic child

Hester Grainger 18 January 2022

Autism is widely misunderstood by the general public which can mean many parents of autistic children face ignorant questions. Here's what not to ask

As a mum to two autistic children, it’s great to see television personalities like Christine McGuiness and Melanie Sykes sharing their recent autism diagnoses. They are both parents of autistic children. As autism is often genetic, if a child is autistic, one of the parents may well be too. A couple of years ago, both of my children were diagnosed with autism spectrum condition (ASC), following that process, my husband was diagnosed too.

As parents we found it a steep learning curve and were surprised to read that, according to the National Autistic Society, one in 100 people are autistic (although many more people may not be officially diagnosed or even know that they are autistic).

What is autism?

Autism is a spectrum condition and affects people in different ways. Like all people, autistic people have their own strengths and weaknesses. Autistic people can struggle with social communication, reading social cues, taking things literally, repetitive behaviours, sensitivities to light, touch, smell, sound, and also often like routine.

There are lots of amazing traits which can include being creative and innovative, having special interests and being honest and wanting to do the right thing. There are a lot of myths about being autistic too. Once I started talking to people about our children’s diagnoses, I quickly realised that these myths were even more common than I had first thought.

So here is my list of what not to say to someone whose child has been diagnosed as autistic:

Everyone is a little bit autistic.

I hear this one the most. No, everyone isn’t a little bit autistic. You may have autistic traits, but to be diagnosed as autistic you need to reach specific criteria with difficulties in a number of areas. Saying everyone is “a little bit autistic” is insulting.

Your child doesn’t look autistic.

I’m not sure what autism is supposed to look like or what normal looks like! Instead say, “Can you explain autism to me?”.

What is your child’s superpower?

People have asked whether my children are a maths genius, can paint St Paul’s Cathedral from memory or play the piano without music. At first I didn’t know whether they were joking and I wasn’t sure what to reply. Now I say that their superpower is being kind and funny.

I am sorry, I don’t know how you cope.

This is a double-edged sword as someone may be trying to compliment you about how you are managing, but it’s hurtful. I don’t want you to be sorry, my children are not ill. They have always been autistic whether I knew it or not. Knowing that my children are autistic actually made life easier for us. It helped us understand them more and put strategies in place. Instead you could say: “That must be a lot to deal with, I’m here if you want to chat.”

Have they always been autistic?

Autism is a neurological condition that people are born with and don’t grow out of.  Instead say, “When did you realise that they may be autistic?”

Are they high or low functioning?

If you met my children they are bright, funny and engaging. So, to many they are deemed as “high functioning”. They often mask when not at home, but when they are behind closed doors they can have a meltdown or stop talking, as they decompress. Instead ask if they need much support at home or school.

Your child can’t be autistic—they make eye contact.

Making eye contact (or not) isn’t a sign of autism. Some autistic people concentrate incredibly hard to make eye contact, even if it makes them feel really uncomfortable.

Why would you want to label your child?

It’s not a label, it is a diagnosis and without that, for many children, they won’t get the support they need and deserve. Instead ask, “How can I help your child today?”.

It’s just autism, you should get on with it.

You wouldn’t say to a person in a wheelchair, that they are making a big deal of trying to get up some steps without a ramp. Instead ask, “How can we support you?”

It’s just a trend.

No it isn’t. There is more awareness and understanding happening, so more people are discussing it, which is fantastic. Instead ask: “Where can I read more about autism?”

For more information and support visit:

www.autism.org.uk

www.perfectlyautistic.co.uk/individuals

www.annakennedyonline.com

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