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5 questions about autism and how to ask them

There’s no such thing as a stupid question‘. I mean sure, when you are in education. But we all know there is such a thing, and we experience it every day. For example, when your tummy is rumbling and someone asks if you’re hungry. Or when you hit your knee/toe and someone asks if it hurts. Or ‘Would a fly without wings be called a walk?’. No.

One of the great things about awareness is that it gives you the knowledge to transform a stupid question into a meaningful enquiry. So, here are 5 stupid questions I’ve been asked about autism and how you can turn them into meaningful enquiries.

  1. Have you tried disciplining him?
    • Apologies stranger, I can’t hear you over my child writhing in sensory pain and screaming bloody murder in the middle of this busy supermarket parking lot.
    • Think: How will taking away his favourite toy, switching off his favourite music or making him stare at the wall for 20 minutes cure his sensory sensitivity? Discipline is taught when children are naughty. For example, when I was a child and I was disciplined by my parents because I’d done something they had expressly told me not to. Being overwhelmed by sound, smell, colour and touch is not something people with sensory overload can control. Christos wasn’t reacting to an instruction or a restriction with his tantrum. He was reacting to physical pain. You can’t discipline him for that just like I can’t discipline you for asking that question.
    • Meaningful Enquiry: What’s bothering him/her?
  2. Maybe he’s just hungry/thirsty?
    • Thanks.
    • Think: Every parent is paranoid about their child’s nutrition. With autism and sensory overload you have the additional hurdle of them not eating everything and their heightened sense of taste. The second post I wrote for this blog was about Christos’ food – Best Food Critic in Town – and the Gluten-Free diet. My dad spent hours developing new recipes which incorporated all the vital nutrition he needed and adding it to the 5 things he agreed to eat (egg and lemon soup, pasta with tomato sauce, curry, chocolate cake and halloumi). It got to a point where our mum and dad’s food was so delicious, he wouldn’t eat at a restaurant. We took food with us; hell, we tool grated halloumi with us. He’s obviously a lot better now, he eats salmon, cremes, chicken, fish curries. I think the weirdest thing he doesn’t eat is potatoes. But hey, I don’t eat beef so I guess we’re both weird. When they are young PECS is a massive help in terms of communication and hunger. I definitely recommend implementing it at home, but also having a travel version for trips to the restaurant or market.
    • Meaningful Enquiry:  Can I get them something they like?
  3. Autism? Does that mean he’s really good at maths?
    • Maybe.
    • Think: No two people on the spectrum are the same. Chris is good at math, but he’s also really good at other things. He has great memory, an amazing sense of direction and he can cook. Stereotyping people on the spectrum and not realising that, just like all of us, they can be unique in their abilities is one of the biggest downfalls of understanding autism and befriending someone on the spectrum.
    • Meaningful Enquiry: What does he/she like to do?
  4. Does he/she understand? 
    • Do you?
    • Think: Yes, they understand. It takes time, alternative therapies, PECS, speech therapy, studying, learning, testing, preparing etc but yes, they understand. Just because someone doesn’t speak your language doesn’t mean they have nothing to say. That’s what autism is, a different language. All we have to do is understand it. There are so many unanswered questions, facts, about autism that we have yet to come to grips with.
    • Meaningful Enquiry: How can I tell them [something]?
  5. What’s wrong with him?
    • The short answer is: That question. That is what’s wrong.
    • Read: Autism has been in the limelight over the last few years. Just a Google search of the word and you get articles, organisations, news items etc. The basic information is there. I have so much admiration and respect for all the parents (including my own) who raised extr-aut-inary humans without this information so readily available to them.

For those of you who are willing to go the extra mile, I will be starting the Autism Awareness Diploma with Online Academies which is currently on Groupon for £19. Netflix is also streaming a new series in August called ‘Atypical’.

Learn, read, educate yourselves. Read/watch the sad stories, the happy ones, the scientific ones. Each one has something to teach you.

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Thinking about the things you don’t think about: b) Attack of the Toothbrush

So, I can write a lot about this because I went through it myself. You see, my dad (sorry daddy, I love you) has a real thing about brushing teeth. He sits there and stares at you while you brush, and if you don’t do it right he makes you do it again until you do it right. Who knew there was a right and wrong way? My dad does; not gonna lie, there were tears involved. He times you and asks you 3+ times a day if you’ve brushed your teeth. Even without Autism in our house, this would still be a daily thing. He just wants us to be at our healthiest all the time, but man it was a mission.

I had ‘okay’ teeth when I was little, personally I blame my nan for having a cake shop and the heaps of icing, sugar just low enough for me to reach. What was I supposed to do? Not cover myself in sugar and chocolate? Insanity. Anyway, I got my ‘adult teeth’ and they were pretty good, and then came the dentists. Dear Lord the dentists, they still give me nightmares. My dad can never come in with us at the dentist; he starts crying and it’s a whole ordeal. But everyone’s happy after it’s done… except me.

The reason I’m writing this is for you to imagine this PLUS Autism.

I mean it’s pretty rough having your teeth fall out when you have the ability to understand why; imagine not knowing. You wake up in the middle of the night because one of them fell out and you call your mum; imagine if you can’t. Your dad takes five minutes brushing your teeth and you don’t understand why. When he was younger and we had to do it for him it was a battle. There were tears, there were tantrums, there were fights, toothpaste everywhere. He hated it, we’d have to hold his head, have him sit on our laps, chase him around the house with the toothbrush. Unfortunately, he had really bad teeth as a result of his complete refusal to brush more than a few seconds. He had to have extensive repairs and even surgery. Again, tears, tantrums, he would not, under any circumstances let the dentist touch him. He would not sit still for any of it. I mean how could he with that light shining in his face, someone’s fingers in his mouth, the taste of gloves, the sound of the suction, the tools, the pain and us holding him down; again, this PLUS sensory sensitivity. It was unbearable to know he is in such pain, but it was for his own good, we insisted and persisted and now he doesn’t mind it as much. He had his operation and it was dreadful, we all fainted, we all cried, it was the kind of aftermath you would expect from a family like ours.

Once he started speech therapy and we started incorporating pictures and words in it things got better (Making routine flexible.) It was part of his routine now to brush his teeth, and he understood that he had to photodo it; he didn’t like it though. He had this cheekiness about the whole thing, he would try and wash off all the toothpaste off the toothbrush, he would pretend it was too hurtful, he would pretend to cry while he brushed, or try to kiss you or wipe the toothpaste on you. Like all things, he needed a time limit – my dad sitting there staring was incentive enough for me, but it wasn’t enough for Chris; so we started counting. It was 10 seconds on each side, up down, front teeth and tongue. I giggle when I remember saying to Chris when he got older “Time to brush your teeth” the sheer horror in his eyes, like it was “Come on time to torture you”. It’s so funny to remember the bathroom fights we used to have because he would do it too fast, or my dad would count Mississippily slow to get that extra second in, so Chris would get frustrated. When he learned how to count he would do it himself, no man on earth could count as fast as him while brushing his teeth. All the numbers mashed up into one. As you may have guessed, we had to have him start over again, and again, and again.

But, like in most cases, our persistence paid off. Brushing teeth has now become something he reminds us of. He doesn’t go to bed at night without brushing his teeth, by himself, for a whole minute. He even uses an electric toothbrush now – took some getting used to.

This, of course, takes a load off my dad because he now doesn’t have to sit there and stare or count; he just listens through the door and gives us a look when we do it wrong. It was all for a worthy cause though, we both have a healthy straight set of gnashers and didn’t need braces; all thanks to that wonderful man sitting there, staring at us while we brush.

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Thinking about the things you don’t think about: a) The Sock Wars

I’ve been talking to parents of non-autistic kids and it suddenly made me really aware of how differently we see every day things. Like getting dressed for school, putting on socks/shoes, brushing teeth, fixing up hair, shaving, haircuts etc. This is going to be about the things you do while thinking of your day, your plan, a conversation. This is going to be about the things you do automatically, the small compromises you make when your shoes are a bit uncomfortable, the haircut you get while you chat away to your stylist, the minute amount of effort you put in washing your face in the morning. I want to make people aware of how different our lives are, why our worries may seem unusual. I want to let other parents know that they’re not alone.

The first post will be on socks.

Chris loves walking around barefoot, to the point where half of my dads day would be spent on running after him to put his socks back on or to wear shoes. He would wear them and then take them off almost immediately, run to us and give us hugs and kisses, just in case we got mad. There were shoes, slippers, socks everywhere. In an ironic twist of events now he wears shoes, slippers, flip flops around the house all the time. It used to take about half an hour to an hour getting him ready for school in the morning. The hour usually came as a result of what i remember as the ‘sock wars’. photo (1)

Following on from the sensory sensitivity posts, socks were our biggest struggle. Somehow, even though he can dress himself and do everything by himself, socks were the only thing he would not put on; we had to do it. They need to be put on perfectly, if not you start again. If you touch the wrong spot, or accidentally stroke his ankle, toe at any point you have to start again. If you tickle him or give him an inadvertent ‘Lets go’ pat, you start again. If you don’t start at the right end, if both sides aren’t moving up at the same pace, if its too high or too low, you start again, you start again, you start again. No loose ends, no marks, no holes otherwise you start again. Even if its not visible, is it a new pair? Are you sure they’re a pair? Start again, just in case. Then come the shoes. Something’s not right; is it the shoes or the socks? Take everything off and start again.

It’s quite funny thinking about it now, mostly because I haven’t been part of that ritual for years, but I cannot describe the stress that develops from putting on socks. Bottom line was if he’s uncomfortable everything has to start again. There was no compromise, no slight adjustment and just go along with it. If it happened during the day, at the school, the supermarket they’d come off.

Sensory sensitivity can be a real time consumer. I’d say don’t get frustrated about it but that would make me a hypocrite. Me and my dad would just give up after the tenth time. My only advice is keep at it, you’ll get it right at some point. It’s not their fault, and it sure isn’t your fault. You know how sometimes your socks might be inside out, or might not match? That doesn’t happen in our house. Even if we wore sock the wrong way, he would make us take the off and put them on the right way.

Five paragraphs on putting your socks on – how many lines would it take you?