I was watching BBC Breakfast last week and they showed a report on difficulties getting employment at the moment due to the pandemic. They interviewed one lad who they described as having “ADHD and mild autism”. I have to admit that that description annoyed me…..a lot! Why? Well, you’re either autistic or you’re not! There’s not a mild version of autism, but each autistic person will have a variety of things that they struggle with. I assume that the lad probably has Aspergers, like my son. By saying that he had ‘mild autism’ it says that he doesn’t really have any struggles fitting into a neurotypical (non autistic) world, which I’m sure isn’t the case and that, like Kieran, he’s learnt strategies to cope.
Our son was diagnosed with Aspergers in March 2015, aged 16, followed a few days later with a diagnosis of epilepsy. We had suspected he was on the autism spectrum for a few years, so the diagnosis of Aspergers was welcomed (the epilepsy one not so much!). We had started the assessment process when he was 12 and it had been a long 4 year wait for the diagnosis. It was greeted by cheering and high fives as we were relieved that someone else had (at last!) seen the differences in Kieran that we had seen. I must add here that not all families feel like we did when they get the diagnosis of autism – for many it can be a shock and feel like a disaster and they will need a lot of support to come to terms with it. I was fortunate that I had worked in an ASD unit at a local school, where I worked with some wonderful autistic children. This had given me some knowledge of autism – maybe that’s why it didn’t feel quite so scary. However, other people’s reaction to the news sometimes baffled me. We had a lot of people say “I’m sorry” like Aspergers was one of the most awful things you could be diagnosed with – it’s not! We also had someone say “I’d never have guessed, he seems so normal” which actually implied that anyone with Aspergers isn’t normal (whatever normal is!) – thanks for that! The reason he doesn’t always seem autistic when you first meet him is that he has had to work hard to fit in to the neurotypical world so he can be accepted by others. Sadly this is what many autistic people do and it is exhausting for them. It didn’t stop after the diagnosis either with people telling me that some of the things Kieran struggles with were “just typical behaviour of teenage boys”. If that was the case, I’d love to know why he’s still struggling with the same things now he’s in his 20s!
Executive functioning is defined as the cognitive abilities that control and regulate most of what we do in life. It helps with time management, organising, planning and problem solving plus much, much more. Kieran’s executive functioning certainly doesn’t work as well as it should. I often have to remind him to get up, despite the fact that he has several alarms to remind him. He can also struggle to get out of the house in time to go to work without a reminder or two. When he was younger he was forever losing things at school (coats, gloves, book bag, etc.) or forgetting to take something in to school (which occassionally resulted in a detention!). When it comes to tidying his room, he can only cope with sorting one thing at a time (books, clothes, recycling etc), before being given the next suggestion of what to sort. He struggles to have a list to help him tidy his room as it makes the task seem too big, so either me or my husband have to be there to help him. There are more ways that Kieran’s executive functioning is affected, but I don’t want to make this post too long, so maybe I’ll return to this subject in another post.
Motor Skills and Coordination
This is something else that can be a struggle for Kieran. As a result he’s not learnt how to swim or ride a bicycle yet. If I’m honest, I don’t think he ever will – not because he wouldn’t be able to (with good support), but he finds getting the coordination right quite difficult and now has no interest in learning. As a result, Kieran didn’t take the cycling proficiency test or do any swimming galas whilst growing up. It also took him until late teenage years before he learnt to tie shoe laces – it was just too difficult and fiddly. The thing that changed it for him was finding this video on YouTube (start at 1:19). Maybe if you know someone who struggles to tie their shoelaces it may be worth watching it! We also bought him an electronic games advent calendar last Christmas, where you could build your own electronic game each day. We thought it would be good for someone who likes technology. However, he found it too fiddly and gave up after one day! As his parents, we should have guessed that he might find it hard, but we still try to give him opportunities to develop his motor skills and coordination, even if it doesn’t always work out!
Now anyone who has met Kieran knows he can talk just fine. It wasn’t always the case and he was over 2 years old before he said anything. Single words weren’t really a thing – he said one or two, but quickly moved into using whole sentences. I remember my Mum commenting that he spoke in a very grown up way despite his young age. However, communication is far more than just talking! Kieran has found understanding sayings difficult and we’ve spent most of his life trying to explain them to him. This has actually been a good thing for us, as using sayings can come too easily and sometimes you forget the meaning behind them! He’s now at a point where he’ll understand if it’s a saying that he’s come across before, but we still get asked to explain unfamiliar ones. Understanding someone’s tone of voice can be another difficult area for him. For instance, we have sometimes been accused of being angry with him when all we’ve done is talked a little bit louder than normal. Processing language can be another area where life is difficult. If more than one question or instruction are asked in the same sentence (or one straight after the first), he will have trouble processing what he’s been asked to do. This can lead to him doing/answering just the first thing or maybe none at all! Occasionally this can lead to a meltdown as there can be too much to process, which is stressful for both him and the person supporting him through the meltdown (usually me).
Kieran has a few sensory issues. One of them is touch, which you will have discovered if you’ve ever tried to get his attention by tapping him on the arm or shoulder. It’s really uncomfortable for him and he will pull away and sometimes scream. As a family we have had to learn to ask before giving him a hug and on occasions, he’s refused. Another one is noise, but not always loud noise – it often depends on the pitch. So something fairly quiet, like a flute, may cause him to reach for noise cancelling headphones while listening to loud music may be fine. Sudden loud noises, such as an emergency vehicle sirens, can also cause difficulties. Kieran has been working part of the time at home during the lockdowns. I’ve tried to avoid doing the washing or putting the hoover over on the days that he’s worked at home. Although he can just about cope, he will usually have to shut doors to help him cope better. Being sensitive to touch and noise has made haircuts difficult for Kieran and so they still get done at home by my husband, so Kieran can take a break when needed. Although taste isn’t too much of an issue for him, anything that looks different won’t get eaten. For instance, Kieran will eat rice, but not risotto because the rice used in a risotto feels strange in the mouth as it is too big. He’s reluctant to eat a dish if there are large leafed herbs in it as they look too much like leaves off a garden plant! He’s also won’t try anything different at a restaurant, in case he doesn’t like it. In the past he has tried a bit of what I’ve chosen, so that he can have it next time if he likes it. Kieran also has a very poor sense of smell, which, to be honest, can be beneficial at times, not least when we used to visit my Mum when she was alive and the local farmers were muckspreading out in the fields!
Kieran finds change hard at times, especially if it’s last minute change or no reason has been given for the change. Often this gets dismissed by others as “Well, no-one like change really!”. However, for Kieran it can be very confusing and distressing – keeping in a regular routine is much easier. As you are aware, there has been a lot of change happening throughout the world these last 12 months. Thankfully, Kieran has coped pretty well, partly due to there being warning of things like lockdown coming. The school where he works also gave him a few days warning that they wanted him to work some of the week at home. Now that most school children are returning to the school building, he’s had advanced warning that he’ll be back in the building every day again. With a little bit of warning, Kieran can manage change as well as most people, but last minute changes can lead to a meltdown.
But there are positives!
These are just a few of the ways that Kieran finds life difficult – trust me, there are many more! It all sounds like having Aspergers can be awful and, although life can be hard at times, it has a lot of positives too. So let’s end on some of those. Firstly, I have the most loving, kind, caring young man living in our house. He’ll often offer to give me a hug if I get upset about something, despite the fact that he can find hugs difficult. When I was diagnosed with depression, he would help and support in any way that he could. He will occasionally pop into the local shops on the way home from work and I find that he has bought an extra chocolate bar as a treat for me. As I mentioned earlier, he loves technology and this has led him to working in a school as their IT Assistant. This also means that we get the benefit of his expert help at home when our technology decides to stop working properly. He helps out on the tech team at church which means he’s been in the church building on a regular basis during this last lockdown, which has helped the church livestream services, but also kept some routine in Kieran’s life too. He’s a brilliant puppeteer and video editor for Peckett Puppets, which has kept us all going during lockdown. Kieran has a fantastic sense of humour and is regularly making us laugh with puns, funny comments and silly faces. He’s a real joy to have living with us.
So you see, having Aspergers may be hard at times, but it’s also pretty awesome!
(Written with permission from and reviewed by Kieran)
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