Izzy Rodgers discusses her personal experience of having an autistic twin brother.
Everyone’s experiences with autism are different. There is not one single defining characteristic of the disorder. So, it should come as no surprise when I say that this is a very personal account on what it’s like to have an autistic twin.
I am not attempting to generalise the condition, as there remains a whole spectrum of different behaviours. This is merely an individual insight into my own experience of living with a severely autistic brother.
Autism is often defined as a lifelong developmental disorder which affects how a person perceives the world around them. It has no single, known cause.
An autistic person typically has difficulty in processing and responding to their environment. Their supposed ‘abnormal’ behaviour may arise from an inability to understand and communicate their feelings.
In the more severe case of Harry, my twin, if he found a situation overwhelming (perhaps due to a sensory overload i.e. oversensitivity to noise) he may shout at random or physically lash out at a person – simply because he had no other way to vent his frustration. This would be his way of coping with a situation.
Similarly, instead of a hug or a handshake he may come and sniff your head – again, showing a different way of interacting with sensory issues.
In terms of communication, Harry’s use of language has always been fairly limited to the odd sentence or repetition of words.
Phone conversations have always been brief, with the chats mainly consisting of whether he’s had a good day (met with a resounding ‘yes!’) or what the weather was like (‘it’s raining, oh dear never mind.’)
Interestingly, he may turn to fictional situations to express his own emotions. An example of such would be him mentioning in passing conversation that ‘owl was cross’, bearing in mind this is the owl from Winnie the Pooh. You wouldn’t want to be around when owl was cross.
His understanding of language is somewhat limited, yet he has still learnt to communicate in his own way to make his wants and needs known.
It is usually assumed that autistic people are naturally ‘anti-social’ because of difficulties in communication – a complete misconception.
Harry loves to laugh, and we love to laugh with him. Of course, how much social interaction someone desires varies from person to person, yet many autistic children do actively enjoy speaking and engaging with other people, yet they may have trouble approaching others in a socially acceptable way.
For instance, Harry loves being surrounded by friends and family, enjoying a good party where he can sing his favourite Presley tune, ‘Viva Las Vegas’.
Though at one party, at exactly 9.30, he decided it was time for the party to end, time for people to go home so he could have a bath and go to bed – whilst the rest of us (naturally) soldiered on.
Growing up with this was little strange, I will admit.
Having a twin brother who would constantly be humming and running around the house certainly made for a lively atmosphere.
Of course, there were difficulties in the sense that Harry needed constant routine. And I do mean constant.
In a house of six, with four teenagers, providing a strict routine for each day proved extremely tough for my parents, and Harry’s inability to adapt or be flexible with plans could result in some pretty extreme meltdowns.
He also has a pretty unique approach to toileting, as he strips down completely naked before the deed is done (inviting active participation in the wiping part). Not an ideal situation when using public toilets.
There would always be issues with accepting Harry’s disability. To have people stare in public, especially during a meltdown, means we all had to develop a thick skin pretty quickly.
These were complex emotions we as a family all had to face. I have had to accept that I may never be able to fully talk to and relate to my brother, my own twin.
We have had to learn how to support Harry through different coping mechanisms and different strategies to try to understand what we could do to help: the condition itself is seen by many as a lifelong disability.
These difficulties have certainly caused a lot of strain and stress on us as a family, with a lot of our childhood involving continual sacrifices and compromises.
Yet what we can understand about autism, or at least what I have learnt, is that we must acknowledge and accept differences in one another.
…autism itself should never be seen as the single most defining quality of a person.
It has certainly taught me the meaning of patience. You can also see the best in people, that is in their interactions with Harry, with many friends and family accepting Harry and his unique ways without a second thought.
Though Harry may not conform to society’s ‘norms’, he still continues to defy everyone’s expectations; his ability to laugh and hold eye contact certainly goes against the typical ‘disengaged’ characterisation of an autistic child.
In many ways, Harry has shown me how there doesn’t need to be this pressure to be a ‘perfect’ family, and how even in the messiest situations, we have found unconditional love and affection for one another (sorry, but all sappiness intended).
What we may perceive as ‘abnormal’ may simply be looking at the world from another perspective. Most importantly, autism itself should never be seen as the single most defining quality of a person.
Living with an autistic twin has certainly always been a unique experience, and has never ever been dull.
So, thanks Harry. Thanks for the High School Musical dancing; the Elvis Presley belters; the continual ‘thanks Izzy’; and of course, the constant head sniffs. Thank you.
Thank you Izzy for sharing your story.