Monday, April 2, 2012

Q&A 2: What can I do to help you and your Autistic children when we are around them?

When I asked.... As a parent of children who do not have ASD, or as a person who has little or no knowledge of ASD, what do you most want to know/understand about Autism?...  I got a few different answers. The most common theme was what do we do when we are around you and your kids?
The questions were presented in a few different ways, and the easiest way to answer these is one at a time!  So, here I go!

Do we treat the children like we treat out own children or do we treat them differently because they have ASD ? I know some parents like their kids to be treated the same as any other child but other parents do not ? What's the correct way to interact with people/children with ASD ?

The short answer to the first part of this one is yes. And no. 
If you are around my kids for a while they'll probably do something that seems different to you. It might not be different enough to make you think "that child is Autistic". It could be something as simple as what seems like an over reaction to something, or slight rudeness by failing to answer you or look at you. Or, they might do something you think is naughty and my reaction might seem a bit weird or lenient. The fact is these small differences are an indication that my child is different than yours. So, yes, there are some times I need you to treat my child differently. I'll use our playgroup as an example. G and I have been going to the same playgroup for a couple of years now, and some of the wonderful mummies there are now among my closest friends. They were there the day after G was diagnosed, asking how it went and how I was feeling. As time has passed, and they have seen a variety of G's moods and behaviours they have become great support to me in that when we are at playgroup I can relax a little as I don't have to shadow G so closely because they understand a few key things about her. They know if she hurts herself or is upset they shouldn't touch her. There have been a few times I've noticed one of them stand by her (and stop other kids from getting too close in an effort to help) while another comes to get me. They know that if she doesn't look at them she's not being rude, but that it's probably an indication she is having a rough day, and they respond by giving her some space. They know that some days G will be all in their face and they are OK with that, and they do their best to engage with her in a way she finds meaningful. In short- they don't expect her to be like other kids, and they are prepared to go with the flow, so to speak. They also know that sometimes G will react badly if their chid interrupts her game, and they are forgiving of that. I've seen mums at playgroup ask their child to step back and give G space instead of insisting on a teachable moment about sharing. Allowing her to be treated like a child much younger than her for a moment, while she regains her composure, is something I appreciate. But it leads me to the part where I say, No! I don't want you to treat my child differently! G is Autistic, but she still needs to learn to function well in society. She does need to learn to share. For her the process is more tricky because she has to overcome the challenge of a somewhat upside down nervous system. If someone takes a toy form her, her body's response is similar to what yours might be if you have a car accident. So she needs a moment or two to regain her equilibrium. Once she has done that I can help her with the learning of social conventions. So in that sort of situation, she needs to be treated differently for a minute, but then the same after that. I love it when a mum at playgroup will give us a  minute to pull ourselves together without taking her child too far away and is open to helping G learn by interacting with her about what happened while I am there to guide the conversation and use words G will be able to process. The other time I don't want you to treat her differently is when she approaches you to tell you something. You don't need to speak down to her, and you don't need to worry about upsetting her. Just chat with her the way you would any kid- if you don't understand something she says ask her to say it again. She's just a kid trying to learn how to "be" in the world, and if you act the same way you would with any other kid, you help her learn. 

However- having said all that, I have to add that I can only speak for myself here! Other parents might feel differently on this one.

So, I guess I'm trying to say the correct way to interact with Autistic children is to follow their parents lead, go calmly and quietly, let them be themselves and realise they have a lot of extra stuff to wade through when interacting with you than you do when interacting with them.

What are some ways we can help them feel a bit more at ease when we meet / interact with them?

We all get a bit nervous meeting new people to some extent. Until an Autistic child has met you lots of times, it will feel like meeting someone new every time. L is getting better at this, G still takes ages! Some things that help are-
  • Don't stand/sit too close to them. Let them have some distance between you and them. 
  • Don't stare them down! Look around a bit, it gives them a chance to look at your face without meeting your eye. Don't worry if they don't really look at you. Sometimes looking at someones face takes so much effort that they won't be able to have a conversation at the same time, so avoiding looking allows them to talk. 
  • Ask open ended questions. If you ask a question like are you having a good day, you will get either "yes" or "no" as an answer.  Try asking them about why they've been doing today, then they can safely recount their days activities as fact and not have to open up emotionally or reveal lots about themselves. You could also ask what do they like to do/ what is their favourite thing to do  at school/home. If you do though you need to be prepared to listen for a while because you've just given them an opening to talk about their Obsessive Interest (I talk more about Obsessive Interests here), and it could take a while before they stop!!
  • Go calmly and quietly.
  • Don't be uncomfortable with silence! It can take a moment sometimes for ASD kids to process things. If you've asked a question they might need to think before they speak.

What things others have done that you experienced as supportive...and what things other parents have done that were difficult or hurtful to you as a parent?

I mentioned above how the mums at playgroup are so wonderful and supportive. 
Other things I find supportive are- 
  • Offering to have my kids at your house, with or without me, and doing it in a way that makes me feel like we are welcome even if a bit different. 
  • Allowing me to be late and unreliable without making a big deal of it. If G is having a meltdown right when we need to leave the house it's nice to know I can let that run its course without worrying people are going to be greatly put out by our lateness. 
  • Realising that when I say I've had a "tricky" morning/day/week that I am probably understating, and refraining from sympathising with me as if our lives are the same in that regard, without allowing the fact that our parenting experience is different to alienate us from each other.  I know, that one sounds like a big ask, and somewhat unrealistic. The thing is, all parents have similar experiences in many ways whether their kids are disabled or not, but G's meltdowns are not the same as the tantrums that happen in your house. Comments like, "that must be hard" or "you must feel worn out" are validating to me. 

Instead of rambling on here, I'm going to share a great post I found on Facebook recently. I believe it came originally from a site called It is written a little defensively, but it makes good points!

1. Please don't say to the parents, "can't you just". No we can't just give him something else to do, distract him, blah blah blah. If we could, don't you think we would?
2. Please don't tell us to ignore his behavi
or. "Have you ever tried ignoring it when he tells you something repeatedly?" Well I challenge you to hear "I can eat dinner at 6" every 30 seconds for five hours. Seriously.                                                                                                                           
3. Please don't ask us "why do you think he is having a meltdown or why is he so upset?" when it seems to be for no apparent reason. Um because he has autism, that's why. If I could get that info, I would.
4. Please don't say the following, "wow you have so much on your plate", or "oh you are a saint". We have our plate and it's no bigger than anyone elses. I am far from a saint and pity is really offensive. Everyone has life and parenting challenges.
5. Offer to help and mean it. If you want to help your friend or family member, babysit, come over and engage the kid, or just listen if we need someone to talk to. We don't expect anyone to solve our problems, we just need empathy and action.
6. Don't ask us if our kid is going to college, going to drive, or going to live on his own. We would have a better chance of drowning in the bathtub than knowing that.
7. Never give up on our kids. Never look at them and think they have limitations. They may be different but they are not less!!!

The next post answering the questions brought up by... As a parent of children who do not have ASD, or as a person who has little or no knowledge of ASD, what do you most want to know/understand about Autism? ... will be on the topic of helping your non Autistic kids understand Autism and be around Autistic kids.

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