Oct. 8, 2017

What's It Like To Have An Adult Sibling with Autism?

1). Tell us a little bit about yourself and your connection to autism.
My connection to autism is my brother, Dominic. He is about two and a half years younger than me. My brother was diagnosed early, maybe around the age of 3 or 4, so he was lucky. As a result of this, I don't remember there ever being a time that I was unaware of autism. So, although I'm well aware autism isn't "ordinary", to me, it is very much normal in every day life. If someone asked me for a definition of what autism is I wouldn't know what to say. With Dominic, it's definition can change on a daily if not hourly basis. However, I can spend two to three minutes with someone and immediately tell whether they have autism, Aspergers or ADHD (or all three). I think everyone with autism has their own super power but this is definitely mine. 
2). How would you describe your relationship with your brother?
The relationship between my brother and I is really special, if a little turbulent at times. But I think that's normal. Dominic has known me from day one so he is very attached to me. In my opinion, I think I am Dominic's favourite human, although my mum may have something to say about that. He finds it difficult me being away. Aged 17, I moved to Cornwall and have never been home for long periods of time ever since. Despite this being such a long time ago, he still finds it hard me being away and on the rare occasions we speak on the phone he's always asking when I'm coming home. When deciding on family days out, it is a lot easier to negotiate with Dominic when he learns that I am also coming. Suddenly, the day trip he was moaning about going on doesn't seem so bad anymore as Amy's going to go too.
Dominic and I share a little sister, Katie. Katie is just under 8 years younger than me and 6 years younger than Dominic. They have a very different relationship to Dominic and I. I have been with Dom since the day he was born. Whereas, Katie turned up a lot later. Whilst I am ingrained into Dominic's routine, after nearly 14 years, I think Katie is still a bit new and alien to him. Of course, he still loves her but he will never connect with Katie like he does to me. 
For the most part, Dominic is a really lovely boy. He is funny, inquisitive and pretty charming. He tells me on a regular basis how "beautiful" I am. If I had a "normal" brother, I would probably be lucky to get this on my wedding. Not everyday is easy, but these little compliments are a reminder of what a great brother he is.
3). Have you found the services to be helpful for your brother?
 Talking about the services that Dominic receives is difficult for me. Being an autism sibling, I always had a lot more responsibility than most other children my age. But dealing with his services was never my job. But I've watched my Mum sort it all out, for a long time now, so I can give you my memories of that. 
To be honest, I think we have had a bad experiences with the services and education system that Dominic has been put through. I'm not sure what it's called but my parents receive money that allows them to pay for Dominic to have an enabler. With an enabler, Dominic is able to go out with a young adult to do activities he enjoys, hopefully giving him a little more independence. Dominic going out with his enablers means that my Mum and Dad get some respite too. 
I remember a time a woman came over to assess Dominic's situation. She told my Mum after "assessing" that she was going to cut most of Dominic's funds. Of course, my mum fought it and when my Mum puts her mind to something it happens, regardless of who she annoys on the way. She got what she wanted. This would be fine if it were a one off thing... but it's not. Every year, she faces battles when it comes to getting the services he needs.
At Exeter College, where Dominic attended, all students are entitled to three years of free education. However, my Mum was told last year that they weren't able to offer Dominic a third year. This is discrimination. Of course, Mum fought it and won.
Dominic went to a mainstream primary school, then, he transitioned into a specialist school for secondary education. Because the specialist school was a fair distance from us he got picked up by a school bus. When he went to college, he was told because he has two working legs and is physically able to step onto a bus he was able to travel independently. He was told his bus services were cut due to lack of funds. 
If I'm honest, I think Dominic has been really let down by most of the services. One day, I know this will be my responsibility, which makes me nervous. She has a bucket load of determination that I'm going to need to in order to get the support Dominic needs.
 4). What has been the most important thing you've learnt as an autism sibling?
I think autism has taught me perspective. Being a sibling of a child with special needs, I have watched my brother grow up in a world that isn't designed or accommodated for him. As a result, he faces challenges everyday that often result in meltdowns and screaming matches. Watching this everyday of my life has been tiring and continues to be so. However, I feel like I have a better understanding of what constitutes a problem. In recent years, I have really come to notice how sometimes other people enjoy having problems. For me, this is something I cannot understand. I find it easy to separate myself from trivial matters that others may get wrapped up in. Don't get me wrong, sometimes (actually, all the time), I can be a drama queen if I fall out of a triple pirouette in ballet or a class doesn't go the way I would have liked. I am a perfectionist. But I can move on quickly. It's what I am used to. 
5). Any advice you'd give to another sibling who's brother or sister has just been diagnosed? 
If your sibling has just been diagnosed with autism, most likely, the books and leaflets you read will tell you quite generic things. For example, your sibling won't understand metaphors, your sibling needs a routine, your sibling will need to be given several warnings before it's time to head out for the day or when they need to turn the computer off. Here are two things the books won't tell you. 
My advice would be that sometimes, life is unfair. Very unfair! Here's an example. So, if your parents catch you and your sibling fighting, please know that it is always going to be your fault. If during this argument, it is you making all the noise and doing all the shouting, then it is your fault. Even if they're winding you up, despite what's going on, it's your fault because you're making the noise. You're not autistic so it's you who should be setting the example. However, if you're sibling is making the noise, then it's your fault as well because you caused them to make this noise. Don't worry, it blows over very quickly and it's all fine. But it's just something you have to come to accept. The quicker you do, the better. 
Also, another piece of advice I would give is about being in public with your sibling, and how to deal with other people's reactions. Not anymore, but when I was younger, I was very conscious about the way Dominic behaved and felt embarrassed when he did something odd in public (in reflection, this was every time we went out). I used to worry about the way others would react to him and think they were judging me or him.
I've read a lot of articles from parents of autism who write about how to deal with strangers who react badly to your child. From these articles, I think it's easy to get in the mindset that everyone is out to get your sibling or wanting to laugh at them, especially when you're already feeling vulnerable. 
However, in my brother's 19 year life span, my Mum has only ever had one person approach her and tell her she needs to control her child. Not because Dominic is immaculately behaved (I can assure you - he's not) but because people don't really care. To be honest, this has probably happened to most parents, whether their child is autistic or not. So it is a waste of energy worrying about it! People are so busy and wrapped up worrying about their own lives that they're not going to notice what's going on in yours. I honestly believe that. It's the same about lots of things in life. People get so worried about how they look in their bikini on the beach and how others are judging them. In reality, everyone else is worrying too much about what they look like in their bikini to notice what anyone else looks like! If anyone does care about your siblings behaviour, they're not even worth your energy.
Whenever my brother does anything strange, in restaurants mostly, my mum will just turn to me and say "he's just doing his bit for autism awareness". I think this is a really positive if somewhat amusing way of looking at it. If people never have to deal with autism then how are they going to learn about it? In addition, if the worst thing about someone's day is that they had to deal with a funny little chap with autism, it will be quite a good day. 
A big thank you to Amy for sharing her story with us, you can contact her on twitter @amymulesx 
Freya xx