Autism is not rare - around one in a hundred children in the UK are diagnosed each year (one in 68 boys in the US). So the chances are that you will know someone whose child is on the spectrum, if you don’t already. My son is one of those one-in-a-hundred children. Since his diagnosis a year ago my family, friends and even colleagues have been invaluable – often making the difference between a stressful day, and a good day. But many of them have also admitted that they aren’t sure how how best to help or what to say, so here are some tips.
1. Acknowledge the diagnosis, but don’t offer condolences
The most helpful responses I had to my son's diagnosis acknowledged that I was going through a seismic upheaval, without implying he was somehow a disappointment or problem. 'You're going to need time to adjust,' was much more welcome than ‘I’m sorry’. But don’t worry too much about saying the right thing. Much like when a friend is bereaved, your friend just needs you to get in touch - quickly. If in doubt, ask questions about her child, and how his or her development has differed from the norm.
2. Don’t say 'They're still the same child’
This platitude gets wheeled out a lot around diagnosis, and although it sounds sweet it’s not necessarily helpful. At the time my son was diagnosed I was struggling to let go of assumptions I'd held about him for years, so when people told me that essentially nothing had changed it felt like they didn't get it. I also felt very guilty about my sense of loss, and being reminded that he was ‘the same child’ only made me feel guiltier.
3. Mention past experience
If you already know someone with autism do mention it to your friend, with the caveat that every autistic person is different. It always makes me feel more comfortable if I know someone already has first hand experience of the condition.
4. Avoid the g-word (genius)
Many people are quick to mention that Einstein and Mozart would now be considered autistic, and that all of NASA is ‘on the spectrum’. They mean well, but it quietly sends the message that society’s approval is conditional - dependent on an autistic child growing up to be a genius, or at least achieving and assimilated by mainstream standards. Only a small proportion of people on the spectrum have special abilities. Don’t the rest deserve our attention, too?
5. Be a willing host
Being the parent of a child with autism can be a lonely path. Invite your friend and their child over often, so that they feel included and that their child isn’t being side-lined.
6. Make an effort with your friend’s child
One of the hallmarks of autism is problems with social communication – which makes it all too easy to ignore an autistic child, particularly if they appear withdrawn or make strange comments. But do try to talk to and play with your friend’s child, even if you feel a bit uncomfortable. It will mean alot to your friend.
7. Ask about food or sensory preferences before a playdate
Children on the autistic spectrum often have greater sensitivities to their environment, so if your friend is coming over do ask ahead if there’s anything her child is upset by or can’t stand eating. It shows a willingness to make allowances, which they'll probably find touching.
8. Stay cool during meltdowns
Try not to look shocked or embarrassed if your friend’s child has a meltdown, and leave her to deal with it - she will know best, and strategies you've found to work on other children probably won't work on this child!
9. Avoid saying ‘me too’
If your friend tells you about something her child does that she finds very difficult, don't 'reassure' them that your non-autistic child does the same. It's a natural response, especially since so much autistic behaviour looks like any toddler on a bad day, but it really undermines your friend’s stress. Most likely your child doesn't do whatever it is to the same degree, and if they do the behaviour will pass with age. Your friend doesn't know how long they are going to be dealing with nappies, broken nights or public meltdowns. Imagine if you didn’t have the safety net of 'it's just a phase'.
10. Ask how your friend is
This will vary from person to person. Some people baulk at too much emotional chat, while others welcome opportunities to rant or cry. But my guess is that every parent with an autistic child is grateful to have their out-of-the-ordinary position acknowledged. Just ask ‘and how are you?’, after you’ve asked about their child.
11. Keep asking
Don’t stop talking about autism once the shock of diagnosis has passed. A good neutral way into talking about it is to ask about any therapies the child is doing. If they aren't, just ask how the child is finding nursery or school.