Guest Post: Autism – A Sibling’s Point of View

This is an historical post from an earlier blog, Adopted Son of the Autism Family, which I had before this current blog. It is re-posted without modification (other than this introductory sentence).

Editors note: please give a warm AutismFamily welcome to Neha Siddiqui, our first guest poster!

This is my first post here, hello everyone! I’d like to start by asking you all to watch the video I have linked, in this video I am speaking to over 100 people about autism from my point of view. Below is the transcript of the video, followed by a hint of what my next post will be about. Enjoy!
“What is Autism? The official definition is, “a group of complex disorders of brain development, characterized by difficulties in social interaction, communication, and repetitive behavior.” It affects each person to a different degree, which is why it’s classified as autism spectrum disorder. Now, how many people actually understood what I just said? Basically, their brains are just wired differently. To me autism is so much more than just a textbook definition, it really affects every single aspect of your day-to-day life, whether you’re the one with autism or you live with someone who has autism. Something of this magnitude can’t be fully explained or even understood in a few minutes, but I’ll try my best to share my experiences and knowledge with you today.
I have an 18-year-old brother – an amazing brother who has autism. 13 years ago my family and I used to live in Ireland, and when I was 7 years old my brother was diagnosed with Autism. Due to the lack of resources available for autism in Ireland in 1999, we decided moved to Australia. But there, we found that the school he was to start attending was for only kids with Autism, and my mother wanted him to be in a more mixed environment, more mainstreamed. Only after a month, we made the move to Houston, Texas y’all and we’ve been there ever since. It’s safe to say Autism has impacted my life in a big way, but think of what it’s like for my brother. Think of what life is like from his perspective.
My brother has moderate to severe autism, and because he’s semi-verbal, he cant pronounce words like we do everyday. His muscles just don’t work that way. This is what I meant by communication difficulties people with autism face everyday. So, when he’s in school, how is he supposed to tell anyone he’s thirsty or needs to use the bathroom? If he’s angry or sad how is he supposed to express himself? In fact how am I supposed to figure out what he’s upset about, so I can solve the problem? Well, thankfully there are ways to overcome verbal communication. My brother, Sameer, was taught a bit of sign language in school. When he’s thirsty, he can sign for water or sign to eat when he’s hungry. I’m so used to routinely asking Sameer, “Yes or no,” in sign language that I automatically start to sign in daily conversation. Some kids who can’t speak at all learn how to type and are able to communicate very intelligently. Take Carly Fleischmann for example, a girl from Canada who has severe autism and apraxia, which prevents her from speaking. She’s able to type and now even has her own blog; this is a girl who was never able to talk to her parents, she couldn’t say she wanted to eat this and not that, or that she didn’t want to wear a sweater today but just a cardigan instead. At age 11 she learned how to type and let the world know how she really feels and why she acts the way she does. There are numerous other kids who have been able to overcome their lack of communication and write beautiful poems of life from their eyes, and how they feel trapped in their own bodies.
Sensory Processing Disorder is another condition most people with autism have. It’s when sensory signals in the brain don’t get organized into the appropriate responses. Think about your 5 senses and how much you rely on them to provide you with information from your surrounding environment; you can see what’s going on, hear other people’s voices, etc. For people with autism, these five senses are all magnified. Sameer has never worn jeans in his life, not because he’s picky, but because the material is too rough and hurts his skin. Another example is that Sameer wears his sunglasses year round, day and night, because he’s really sensitive to light. He even falls asleep in them sometimes! He’s even more sensitive to sound, though. If I’m asking him a question, the buzz of a cell phone on vibrate may be as loud as my voice. He can’t filter out the extra noise around him, whether it be the hum of electronics or someone’s voice down the hall and in another room. If I keep repeating my question and raising my voice because he didn’t answer the first time, it’s just going to frustrate us both and cause pain to Sameer’s ears. Because Sameer can’t communicate to me verbally and say, “Can you please lower your voice, I’m trying to filter out the noise around me,” he may communicate this through his behaviour. He may scratch me or dig his nails into my arms, but this isn’t a behaviour problem. This stems from an inability to communicate.
If this happened in public, and this is a mild example of him digging his nails into my arm, people start to stare and move away. This is nothing compared to the stares received when my brother displays repetitive behavior or does self-stimulating activities. Everyone does self-stimulating activities, like tapping your pen on the desk, biting your nails, pacing back and forth, but for people with autism it’s to help them handle sensory overload. There’s too much going on, too much noise or light; Carly, the girl who communicates through typing, said, “It’s way for us to drown out all sensory input, that overloads us all at once. We create output to block input.” This may be through humming, flapping hands, by playing with a string, or a number of other ways. Now, if there is a 6 ft. tall boy wearing sunglasses jumping up and down and flapping his hands, people tend to stare. Not just stare and walk away, but stop and stare. When I was younger, I would be embarrassed to go out in public with my brother because of how much people would stare and single us out. But now that I’m more confident, I can go with him anywhere.
OCD and anxiety issues are also very common with kids who have autism, which makes going anywhere a problem, sometimes even from room to room in a house. They have a set routine they have to fulfill before doing anything, Steps 1, 2, and 3 have to be done in that perfect order, at the perfect time, or you are not moving on. Let’s say there’s a kid who has to run a lap in his backyard every morning before he goes to school. This kid will run outside even if it’s raining, snowing, there’s a tornado, or a hurricane, this child will run his lap or else he’s not going to school.
These are just some things parents and siblings deal with on a daily basis. And because these experiences are so different from what other families face, it’s difficult to talk to anyone else about this; in a sense, it isolates us. This is one of the first times I’m opening up about this, I couldn’t talk to any of my friends in high school about how my brother has a childhood habit of playing the same scene from VHS tapes over and over again, or how we have stacks of VHS tapes that are 6 ft. tall. I couldn’t explain how frustrating it is when Sameer listens to the same part of “You Found Me” by The Fray for days, it can make you go crazy and really test your patience. Not many understand the implications of this. When I get angry or irritated, my mother always makes me think of his point of view, that this is his form of entertainment and I have my entertainment. I need to understand this, be more patient, and move on. I mean 4 years later, I don’t even hear the song when it’s being played. You really have to take it one day at a time in our house. As you can see, we don’t have a typical brother-sister relationship; I can’t sit and have a conversation with him about what he thought of a movie or as his opinion. Despite that, we have a strong relationship and our bond is deeper than most siblings. This may be because we’ve been through the toughest of times together, and you have to hit the lows in order to reach the highs. Because it is such a high stress life at times, you do see mental health problems, such as depression and anxiety, in family members. As I said, our experiences differ from everyone else, so we tend to isolate ourselves and not talk about it, which increases the chances of mental health problems occurring.
A new study in US weekly suggests that kids with autism have an increasing risk of suicide and depression, and bullying is one of the main factors for this. These kids are more susceptible to bullying because they are different and easy to take advantage of. Currently there’s a campaign by an Olympic torch bearer and Autism Ambassador, Kevin Healey, to try and change laws against bullying and harassment of people, especially adults, with autism. This includes an online petition, connecting with celebrities all around the world, to try and raise awareness of this issue. As he tweets about the campaign, he receives death, which shows you the seriousness of the issue. This campaign reminds me of why I want to be a doctor in the first place- so I can help improve the situation of other families like mine, to decrease their suffering so they won’t have to struggle like we do. I wouldn’t be half the person I am today if it my brother wasn’t the way he is. I wouldn’t be able to understand other peoples difficulties or be so empathetic if my brother wasn’t the way he is, and I definitely wouldn’t be so motivated in what I do every single day. I have an amazing 18 yr old brother who has autism and I’m blessed with a big responsibility to take care of him and be an advocate for those with autism. I wouldn’t trade it for the world.
There are many aspects to autism that I probably missed, but I hope I’ve done enough to decrease some of the stigma surrounding autism and all of you leave with a better understanding of what life is like from another perspective. Thank you.”
If you’re a sibling of someone who has autism, know that you are brilliant. Whether you realise it or not, you’re amazing. I’m not just saying that to make you feel better about yourself, I’m saying this because I know it. It’s taken me twenty years to be able to put my life experiences into words, and it was only after I went to college that I learned how different life is for everyone else. To me, life is so boring without my brother. My next post will be about how much I’ve learned to appreciate every day with my brother, and how you can appreciate your siblings too!

4 thoughts on “Guest Post: Autism – A Sibling’s Point of View

  1. Neha you and your brother are lucky to have each other. I have Cerebral Palsy and i'm sure my siblings have been through some of the things you've been through.

  2. Great – more should be presented by family and parents. Sharing the experience is far more powerful then the usual run of the mill.

    stay connected @AutismMeetup

  3. The blog is very emotional and touching. I really liked it. I have also seen people suffering from autism but they are amazing, they have some quality uncommon to everyone. If they are treated properly and on right time then they can also have a very bright future.

  4. Hey Neha, your post is quite informative and I'm totally agree with all the thoughts you've presented here. bullying and feeling of being neglected is really painful when you are trying to live a normal life by keeping all those odds away. These accidents keep reminding about all the bad feelings and time when you were in your hardest times. Maybe I can't understand what you and your brother have been through, but i know that being together is the most important thing and I'm glad that you guys have worked out all the difficulties. Nice post. Visit the link below, you'll find informative information about autism and speech language disorder.

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