I’ve been procrastinating for a long time about starting a blog. In truth it’s something I’ve wanted to do for several years but I never felt the time was quite right. So a few weeks ago I gave myself the deadline of today, World Autism Awareness Day, to get organised (and brave) and launch my new blog about being a single parent with an autistic child.
It was my son Rex (he’s not actually called Rex, but when I said he could have a nickname on here he immediately pounced on Rex. When he was four he wanted his name changed to T-Rex. In the five years since then he’s only progressed as far as losing the ‘T’ and then only because there is a Rex in Star Wars apparently…) who handed me the idea and content for today’s post. He was telling me about the assembly on Autism his school were holding and what he felt ought to be in it. As he spoke I realised he was in effect giving me a list of things he wished other people knew about him and his experience of autism. So there it was. Our first post on World Autism Awareness Day would be one aimed at helping raise awareness by seeing it through the eyes of an autistic eight year old. So, we talked some more and I explained about blog posts. Rex is very keen to be involved and is already an active advocate at school for autism awareness. Below are the top five things he wishes you knew, a combination of quotes from my son and my thoughts:
1. ‘I am trying. Even when it doesn’t always seem like it….especially when I can’t answer. It takes me time to think so I need you to be quiet for longer. Grown-ups talk and think too quickly I can’t keep up’
This is so obvious but something I am guilty of forgetting over and over again. Life is busy and I’m always juggling several things at once so everything ends up being done at top speed. The most obvious example is on the days I collect Rex from school. I’ll inevitably ask ‘How was your day?’ followed immediately by ‘Did the assembly go well? Did you hand the school trip form in?’ Any number of follow up focused questions. Meanwhile Rex is still processing the initial how was his day question and under the fire of yet more questions gives up and doesn’t even attempt to answer. I try to make a conscious effort to slow down and let him think and then speak. It’s hard though and doesn’t come naturally but I know it makes a huge difference so it’s something I need to invest energy and focus in getting better at doing.
2. ‘People say I’m bossy but I’m not. I just get worried and try to control things. So I can make sure I know what’s going to happen next’
This is a big one for Rex. He’s regularly accused on being bossy and gets quite upset by the accusation as he feels is unfair. We’ve reached an understanding now where if he’s with me I will flag that he is ‘coming across as bossy’ or similar. I move the emphasis from an accusation to a suggestion of how others might view it. This wording doesn’t trigger an emotional response in him but still lets him know he needs to consider how he is acting and speaking. This is still a big challenge with other children though, which directly leads to….
3. ‘I want friends too. I like playing with other children and even though I pretend it doesn’t upset me it does when they won’t play with me.’
The myth that all autistic people like solitude and don’t want social relationships just isn’t true, certainly not for Rex. He understands friendship and recognises the value of it, he wants to have proper friends and is well aware of what he is missing by struggling in this area. He tries very hard to copy what he sees others doing and be better ‘friend material’ but it’s a challenge when he also struggles with anxiety and wanting to control situations and people. Thankfully we have some lovely children and parents at his school who are happy to include him but I wish that were the case for all autistic children. Too often autistic children are excluded by accident and even sometimes on purpose both by children, parents and even teachers.
4. ‘I get worried when I don’t understand what’s happening and why. I wish adults would explain things to me more. They just tell me what to do and don’t explain’
This is something I have really struggled with over the years. I was not a parent who naturally liked explaining myself to my child. I was of the view that by and large children should do as they are told. Having to explain my every decision from why we are going to the garage prior to the supermarket to why I chose to toast the bread was exhausting. As was the awareness of other adults becoming frustrated by similar questioning – why do we have to pull up the plane window blind for landing, why do I have to show the doctor my tongue, why do I have to line up at school etc. Nobody really likes having someone consistently question and challenge every small and large decision you make. It was like the ‘Why’ stage only endless and with a refusal to act unless you were convincing in your response. I’m still guilty of not explaining well enough. When I’m in a rush I’ll often wing out instructions with no explanation at all, which is fine if its something we’ve done before but can be problematic if its something new and unfamiliar. Generally though we’ve reached a balance where he can cope with me not explaining when he can tell I am stressed. He makes allowance for me, which is in itself a big change. As with lots of these issues though Rex struggles more with those who aren’t close to him and particularly at school. Until he trusts you and your judgement he really seems to struggle to trust your decisions without understanding the rationale. He is getting better with age and will often let small things go now. Which is very helpful, as it turns out lots of teachers don’t like and haven’t got time to explain themselves to children either! It’s a tricky balance to reach and one we’re still working on.
5. ‘Just because I’m not looking at you or I’m fiddling with my blue-tac making models doesn’t mean I’m not listening. Fiddling helps me to listen properly. This is so obvious its weird people don’t get it’
Fiddling with blue tac, safety clips or anything small and malleable helps Rex stay focused. It also gives him an excuse to not make eye contact; something he can do but he finds very uncomfortable and distracting. By letting him find his own way to listen comfortably, whether that’s looking away, fiddling or fidgeting, you’re helping him be able to actively listen, absorb and remember information.
So that's it. Rex's top five. Interestingly as we finished discussing the above it occurred to Rex that autistic people are all different so they wouldn’t necessarily like the same things as him. He mused on this for a while (I love his musing as he does it all out-loud so I can follow his random chains of thought) but came to the conclusion that they were probably more likely to be similar to him than me (as a neuro-typical) therefore his list might still be a useful starting point!
Three final thoughts (not awareness as such but Rex said them and I think they’re worth sharing):
6. ‘Everyone can learn to do things differently from autistic people. At school they did some things for me because I learn better that way but the other kids really liked it too and now they do it for everyone in my class. Being autistic and doing things differently can make things better for everyone sometimes’
Thinking outside the box and challenging that status quo are descriptions I have heard several times since Rex started school. Often frustrating for the teachers I imagine but occasionally gold-dust when he says something no one had considered before. Just because its different doesn’t mean it is wrong!
7. ‘Ok, so sometimes I think maybe I don’t need to think differently and actually its everyone else that isn’t autistic that needs to change. I mean lots of what everyone else says doesn’t make sense does it? Like when people say ‘I never do that’ but they don’t mean never they mean not often and when you say you’re fine but you aren’t. Or when you say someone’s hair looks nice when they dyed it and it doesn’t. I am much easier to understand because I just say the words I mean. Everyone should do that then it would be less confusing for everyone’
He also said if we did this everyone would get along better. Now, I’m not convinced unfiltered honesty is always the route to more harmonious relationships but he definitely has a point about being aware of the language we use. If autistic children like Rex have to adapt to understand us why can’t we make an effort too…
8. ‘I like being autistic because I guess…..I just like being me and being autistic is part of me.’
This made me feel so happy and proud. There is nothing I want more than him to grow up feeling happy and comfortable in his own skin.
I hope you found these interesting to read. Rex will be co-authoring quite a few blog posts in the coming months including one with the working title of ‘Is it okay to laugh at being autistic?’ Something he has very strong views on!
Let me know your thoughts on the post, likes and dislikes, and on anything you’d like to hear more about in future. Always open to new ideas and improving!
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