I decided to write this list of dos and don’ts for one reason. Before my daughter was diagnosed with ASD, I had no idea what autism was. I stared, I probably asked inappropriate questions, and worst of all, I didn’t bother to inform myself until it affected me. I know it is a tall order to ask others to educate themselves about autism, when I myself was forced into it, but in my experience, most people are genuinely interested and want to help out. So here goes.
1. DO NOT say it doesn’t show or that you couldn’t tell. Yes, I know you mean it as a compliment. But autism doesn’t have a look. If you’ve met one child with autism, you’ve met one child with autism. And please, do not even think about saying ‘but she looks normal’. She is.
2. DO NOT ask me if she has been vaccinated then continue with, ‘because my neighbour’s cousin’s sister in law’s child got autism after having the MMR’. Just don’t. Science says you are wrong.
3. DO NOT stare. I know, it’s hard not to stare at a child who is flapping, shouting or throwing herself on the floor just because she is super excited to be at Playmobil fun park. But just remember how it feels when your own child is throwing a tantrum and everyone stops to stare. Yep, we feel that way too.
4. DO NOT ask me if I can cure it. I can’t. I can make it OK and controllable hopefully. But the fact that I cannot make it go away makes me feel like a total failure.
5. DO NOT tell me to persist and try harder to teach her to talk or toilet train. Guess what? I spend all my time and finances doing just that. It will take longer than it does with other kids, but implying that I have not tried hard enough is unfair.
6. DO NOT hide your kids’ achievements from me. This one hurts. I do get that other parents may think that they are hurting me by reminding me that their kids are hitting their milestones. But what does hurt me is being shielded from it. I want to rejoice with you. Because I know that when we hit our milestones, you will rejoice twice as much with me.
7. DO NOT say ‘I’m sorry’, when I tell you my child has autism. Sure, I do feel sorry about it at times, but then I remember how clever, talented and wonderful she is. And that is not something to be sorry about it. Autism is not a tragedy, but the lack of awareness about it certainly is.
8. DO NOT tell me ‘I don’t know how you do it’. I didn’t have a choice, but I also know that if it came down to it, you would do it too.
9. DO NOT tell me that all kids on the spectrum are geniuses. They are not. And yes, I know about Einstein.
Now for THE DOS
10. DO ask me questions. I honestly love it when people are interested. This is the whole point about being open about my daughter’s condition. I want people to learn.
11. DO know that when I apologize for the noise, or for the fact that she has tried to take your child’s toy and explain about her being on the spectrum, your ‘that’s OK’, and not making a big deal of it, mean the world to me.
12. DO ask if you can help. Like most parents, the parent of a child on the spectrum will gladly accept a helping hand during one of those full blown tantrums, even if it is just getting them a glass of water.
13. DO invite us to parties. Please don’t leave us out because you assume my child won’t enjoy it. You’re probably right, chances are she may hate it and scream, or she will love it and won’t want to leave. The point is that we will try anyway.
14. DO remember that when my daughter is flapping, it means that she is excited. It’s her way of saying ‘oh wow that’s cool!’.
15. DO know that my parenting has to be different to yours. I cannot discipline my child in the same way you do. And I do let her use her tablet while she eats. It means that she will sit down to eat something which isn’t a ‘Cheerio’ or ‘Skips’.
16. DO know that just because she won’t look into your eyes when you are speaking to her, it does not mean she isn’t listening.
17.DO understand that with my daughter, right now, it is not because she won’t….it’s because she can’t….but she will eventually.
18. DO know that telling me how far she has come (and she has), gives me the strength to go on, and that is the kind of compliment that I need.
19. DO know that I do not have all the answers. I’m learning as I go along. I do appreciate the fact that people are taking the time to learn and understand about autism.
This blog post was written by guest contributor Dr. Audrey Komrij Jones, lawyer and campaigner for the awareness of Autism in Malta.
For more information and support relating to Autism in Malta contact Hand in Hand Malta.