Living with autism in this world is like always living in a Haunted House.
Some things, particularly noises, are really scary to a brain with autism because it sees the noise as dangerous. Imagine if you were in a haunted house and all of a sudden somebody jumped out and scared you. What would happen? You would scream, you would jump, your heart would race. That’s because your brain told your body to react that way. Because you were in a haunted house and you were more likely to come up against something dangerous than if you were just walking around out in the sun, your body prepared itself so it could react very quickly. It was on alert. It said “you’re in a haunted house, there are so many more dangerous things in a haunted house than outside in the sun!” That way when something scary happens you don’t go “ok well somebody just jumped out at me. They could be dangerous and it was a big surprise. So now I think I will scream, yep good got that, and now I may try to run away.” If the person was dangerous you would have been in big trouble before you got to the running away bit. So this way your body protects you by running away automatically before you have a chance to think about it.
Well, living in our world with autism is like always being in a haunted house. You never know when something will be different, confusing or scary because the world is made to be easy for other brains not autism brains. With autism brains, they feel things so much more than us. Touch may hurt their skin, sounds may be too loud, colours and lights may be too bright. If the body is always on alert for dangerous or confusing things, or sensations that “hurt” the skin, ears or eyes, then the body will react automatically to certain things. So when the other kids sit calmly at school and concentrate and a child with autism can hear the clock ticking and pencils writing and someone whispering and the work they are doing is hard anyway….the brain will tell the body it is in danger because too many over-whelming signals are getting in and a meltdown may occur.
I use this metaphor to teach siblings about autism, especially if they are feeling jealous that their sibling gets lots of attention. You can explain to them that their haunted house needs more attention and would they want to live in a haunted house? Definitely not! Siblings often want to have autism too, because it means more attention, but they soon change their minds when they start to understand what it is like to live with autism. Stay tuned and I will continue to post ways to create awareness of the autism experience on the blog, Facebook and Twitter.
For siblings you may like to point out that their house may be a bit dusty and there may be cracks in the walls. The cracks are the things that they see as wrong in their life, like missing out on things because of autism (please insert the specific things that are bothering your typically-developing child). Ask them “what are some of your brother/sister’s ghosts?” You can even get them to draw both houses and write in what their cracks are (money, time, emotions) but then write in names for the ghosts in their brother or sister’s house (scared of change, trouble learning at school, can’t talk to people). Mention to the sibling that we can’t get rid of ghosts in houses but we can repaint and clean and add bright cushions and beautiful curtains and fun furniture. Brainstorm with them. “How could we improve your house?” Read on for some ideas.
“Let’s look at your brother’s house. We can’t fix it; there is no cure for autism. There are ways to cope with it, and we can learn to get used to it and to help your brother feel more comfortable and happier but we can never get rid of his autism. We can help your brother be more comfortable in his house. We do this when we let him stay in his room for a long time by himself. He is comfortable in his room and this is the only room in his house that isn’t haunted. He doesn’t usually have ghosts in his room. But of course he has to come out sometimes to eat and go to school and go outside. This is hard for him because then he has to come out into the haunted parts of his house. So he might get worried about doing this because he doesn’t know when the ghosts will come out and scare him. If he went to the supermarket and it was too noisy and too bright and this made him sick in the tummy, he wouldn’t want to go back again. So sometimes we let him stay at home and sometimes we all have to stay at home. This sucks for you because you miss out. But I guess it’s better than feeling sick and hurt and that’s how your brother would feel if we did go. Some days the ghosts don’t come out at all, they are lazy! These days are good and your brother can do more things. Some days when his ghosts are out your brother can’t do anything and he needs us to be quiet and gentle and leave him alone because the ghosts are taking up all of his time.
We can get rid of the cobwebs in your brother’s haunted house with a broom but sometimes the spiders will remake them. This is why sometimes your brother will be so good for ages then he’ll have a meltdown because he’s been trying so hard for so long to keep his house clean and free of cobwebs. This is exhausting. What are some things that your brother has to do all the time to feel ok? (Brainstorm some ideas with them such as having to do extra homework for school, having to keep visual charts, try really hard to understand what to say to people and how to read their faces). The cobwebs may build up again when things change in his life and they give him a fright. This is like when you’re in a haunted house and you hear a different noise and don’t know what it is! Could it be a werewolf? A ghost? A monster? So if he starts a new school or goes to a new place he might feel really yucky and it will be hard for him.
Let’s look at your house. We can fix a lot of it! See that broken window there? We can get our tools out and fix it. Your tools are all the things you can think of that would help you cope with your life. (I like to print out tools and write the techniques on the back and then laminate them. Your child can carry them in their bag or have them in their room to prompt them about what they can do when they are feeling emotional and over-whelmed).
When you are feeling upset or angry, it’s a good idea to take deep breaths right down into your belly. If you put one hand on your belly and the other hand on your chest, you want to breathe so that the hand on your belly pushes out but the hand on your chest doesn’t move. You can also squeeze all of your body up tight and then shake the yucky feeling out of your muscles.
But the best tool you have is your eyes. Your house is bright and light but your brother’s is always dark and he can’t see what is in each room. You can see what you need to fix in your house and better still you can choose what you look at! When you notice a crack in the wall you can get up close and use all of your attention to look at only that crack. Would this make you sad or happy? Or, you can step back and you’ll notice there are more things to look at on the wall, like your favourite painting or the photo of your family or pet. Would this make you sad or happy? You can get up close to all the weeds in your garden or you can step back and notice all of the flowers that are there as well. In your life, you can choose to look at your problems with your brother with all of your attention, you can choose to think about them all the time and only notice how much he annoyed you or embarrassed you that day. But you will miss out on other wonderful things in your life. If he has a meltdown in front of your friends and embarrasses you, you can choose to remember that this was the only important thing that happened in your day and let it play over and over in your mind like a CD that is skipping. Or you can choose to think about all the other things that happened, maybe your best friend said “don’t worry ‘bout it buddy, we like your brother” and you’d actually forgotten that part because you were so caught up in embarrassment. Maybe you had an amazing lunch or dinner. Maybe you saw a brilliant rainbow or a cute dog during the day. It won’t be all bad, unless you only remember the bad! So make the effort to notice the good in your day and don’t hold on tightly to the bad. Notice the yucky feelings and thoughts, say “ah that’s the Terrible Brother Story, thanks mind but I’ve got better things to look at”, “I know the Embarrassing Brother Story well, thanks mind but you don’t need to tell me over and over again”, then get out of your head and look around you.
What can you see?
What can you hear?
What can you touch that is cool?
Your parents might have to help you look for the good stuff to start off with because it is really hard. Maybe they could ask you every night before bed, what were three things great about your day? Maybe you could have a diary that you write down three things each day that were great. At my place, I have a thankful tree and people can write down what they loved about their day on a leaf and stick it to my tree.”
So…In your house let’s try to fix the broken stuff. You can use your mind to help you with that. Is there another way you can look at the situation? For instance, if your mind tells you “he always hurts me! I hate him and wish he didn’t live with me!” You might reply “he does always hurt me but he doesn’t ever mean it. He must be in a lot of pain in his belly to hurt me like that.” This Cognitive Behavioural Therapy (CBT) technique called reframing may be great to teach your child.
Always ask yourself, is this true? Is it helpful? For instance, is it true that your brother hurts you on purpose or is it actually true that he feels things differently to you and can’t understand why it would hurt you? Tell yourself, “it’s really ok to feel and think like this, but it isn’t helpful! So thanks mind, this does suck, but I would rather this than a haunted house!”
We can also repaint the walls in bright colours.Teach your child (or find someone who can!) to cognitively restructure the brain for noticing positivity. Role modelling is the best way to do this. Point out beautiful and interesting things around you as you go about your day. Decide to adopt an attitude of curiousness, notice things with excitement and they will too. Use a thankful tree or a thankful diary to “force” the noticing of positive things to begin with. I am not big on “positive thinking” as it is traditionally used. This may be trying to always think positive and stay positive and change your negative thoughts to positive. I don’t agree with this and I don’t think it works. Teach your children to notice the negative thoughts with curiosity, “hmm that one was interesting! I know it’s ok to be angry and feel down about my situation. I’ll bounce back soon. Meanwhile, what is something I love to do that will help me bounce back?”
Then we can clean off all the dust. A lovely gift you can give your children is the ability to dust off their mind. Meditation and mindfulness are wonderful ways to do this. Encourage your child to spend five minutes each day doing the belly breathing that I spoke about above. Lovingkindness Meditation would be a fantastic meditative technique in this situation. Encourage your child to close their eyes and send love and gentleness to themselves, love and gentleness to their loved ones, and especially love and gentleness to their brother or sister. They will be surprised at how this softens their feelings towards their sibling. Contact me on Facebook if you would like a free copy of the Lovingkindness meditations that I have prepared for my new book Adventures of the Mind, which is due to be published sometime this year. I love to get kids to imagine a hug or a love heart or a bubble in their imagination, moving towards the person they are sending love to and then encapsulating them. This seems to be even more powerful than saying the mantras from the Greater Good link above that offers a free meditation script for kids.
Lastly, we can add in new stuff in our house!Get your child to schedule pleasurable activities into their week or have a “default” activity that they do when they are feeling down such as a funny YouTube channel that they subscribe to or a best friend that they call. Make sure you schedule in time with other loved ones, such as making a “special sib time” date with an uncle or family friend on a regular basis.
That’s a lot of stuff! Hopefully you can find something of use for your youngsters.
Keep painting, fixing, and adding until your life house is brighter!
“Maybe your house is a bit boring or small. But it isn’t haunted, and you can find ways to be thankful for that.”
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