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Article Autism – 5 Things not to say when a friend’s child is diagnosed

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If you don’t already know a child or adult with an autism spectrum disorder, you will soon.

With 1 in 100 children being diagnosed with an autism spectrum disorder (ASD), this complex neurobiological disorder is increasingly recognised and much of the stigma that used to surround it has gone.

Nonetheless, if you have a friend or a family member whose young child has been diagnosed, you know that this is a traumatic time for even the most resilient among us.

My own son was diagnosed as being ‘on the spectrum’ many years ago, but the unkind or just plain silly things that people said to me still ring in my ears.

Some words made me want to weep and others made me want to deliver a punch right onto the speaker’s nose.

So here are my words of advice on what NOT to say:

1) Don’t mention Einstein or Bill Gates

There is no comfort in thinking that a very few extraordinary people may have been on the spectrum.

Your friend probably just hopes her child might sleep at night, or wear clothes, or be able to go into a supermarket.

When your child’s diagnosis is new, you just want them to one day speak a few words or to go to school… no need to make a million or be a genius.

2) Don’t mention Rainman

Even if your only experience of ASD is having watched Rainman, just don’t mention that at this point.

Your friend will find no comfort in thinking that their beloved son or daughter may be able to do some amazing memory tricks, and little else.

Rainman didn’t have good early intervention and his life might have been very different if he had.

3) Don’t say ‘oh my child does that exact same thing’

All children do all of the things that stick out in ASD. It’s just the intensity of how much our kids with ASD toe walk, flap, stare at themselves in the mirror, roll cars in front of their eyes, stay awake all night, throw terrifying tantrums etc that makes them different.

Your child’s occasional episodes of similar behaviour are NOTHING… it just sounds glib and it’s not helpful.

And meanwhile your child is probably talking, pointing, turning when you call her name and maybe even saying ‘Mum’ or ‘Dad.’  And that’s the most different difference of all.

4) Don’t go on about your own child’s developmental milestones

It’s great that your son or daughter can ask for a lollipop, help with cooking, tie their shoelaces, ride a bike… but please don’t labour the point.

It hurts, it really does even though we parents of kids on the spectrum desperately wish it wouldn’t.

5) Don’t tell us about miracle cures you’ve read about on the Internet

Any nitwit can Google seductive, expensive ‘cures’ for autism.

It takes a real friend to offer help, to really understand this disorder, to learn what is known to work and what isn’t.

It takes a real friend to stick with a family in distress through thick and thin.

There are many, many ways to assist a child with autism and none is miraculous, none offer a ‘cure.’

 

Some of our kids grow up to lead the typical sorts of lives that others lead, some are truly disabled and will need care all their lives.

When a child is little and newly diagnosed, your friend has no idea of what the future holds. It’s terrifying.

But you can hold your friend’s hand, befriend their child and walk with them on their journey.

Be the friend who is there for the long haul.

Be the friend who watches a young child work so, so hard to learn and to grow.

Be the friend who celebrates the miniature milestones that mean the world to this family.

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  • Thank you for sharing your thoughts.

    Reply

  • I wouldn’t do any of those things. I would let my friend lead where she wanted the conversation to go, and I would just follow, letting her vent

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  • Many colleagues and friends have children with ASD, I thought the statistics would be higher but we are all on the spectrum somewhere. Very beautifully said – be the friend who helps celebrate the miniature milestones….

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  • I so agree with number 3 .

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  • Oh wow, people/friends have said all those things to me about my son. Especially the one about finding a miraculous cure on the internet. It’s sooo frustrating. :/

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  • Thank for sharing. Sometimes we just don’t know how to deal with it.

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  • I do agree with this!! Well said I must say!!
    I saw everything a step-brother went through in his younger years with ASD – it was full on to say the least but I also saw what pressures it put on my step-mother…
    My son, although not diagnosed as of yet, I know is on the spectrum as do 2 teachers he had for prep. I use to try and talk about it with a friend, but she would blow it off and say he’s a boy, that’s what boy’s do. Honestly made me feel a little disheartened that I didn’t really have my friends’ support.

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  • I just look at them and treat them like I would any other child.

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  • my brother is autistic so i can understand a little from growing up around it but other than saying i grew up with an autistic brother i cant relate at all

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  • At least children and adults with this condition don’t use it an excuse for their different behaviour differences as do some with other conditions. I have a relative who supposedly had ADD who at about 10y.o when asked not to do something, turned around to her Grandma, pushed her face forward and anounced “I’m ADD” was her exact words. She hated school so she worked out ways to get herself suspended so she didn’t have to go……and openly bragged that it was why she deliberately did things she did.

    • Yes, that’s definitely not going to work well in the long term. None of these conditions are an excuse and difficult behaviour can me managed… not saying that’s easy though.

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  • Thanks; have shared with friends.

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  • Thanks for sharing this article.

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  • Ok so there are lots of things NOT to say.. But what DO you say when your friend tells you of their newly diagnosed child? Be there in silence?

    • Just be a friend really. I just needed a friend’s shoulder to cry on mostly.

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  • It is always hard to know what to say ..just being there as a friend and listening and articles like this helps as well..

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  • Being inclusive is pretty important. Don’t just assume your friend with an autistic child won’t want to be asked or invited to things. It’s their right to decline, but at least give them the opportunity to.

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  • I’ve got an acquaintance who’s daughter always gave me a hug and said hello to me and I returned the gestures. I always told my children to treat them as their equal and show them love for they are all God’s children. Not to let them feel different and made them feel they belong in our circle.

    Reply

  • Good article with sound advice.

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  • You have said what not to say, and to be a true friend, but not much in what words of comfort to give them. I think listening and just being there is a good thing. Maybe a hug.

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  • Thank you, there are some great tips there I will take into consideration next time I am speaking to someone who or who’s child has the condition.

    Reply

  • This is a really well written list.

    Reply
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