Inspiration Series: Living With an Autistic Brother
Autism in the family might make things especially hard for the siblings. Parents are often the focus and support centers cater to providing them with optimal assistance in their daily lives. Groups on social media and forums cater to parents of autistic children as well. Siblings, however, are often forgotten in the mix. How do they take it?
An autistic child in the family means many things. It could mean changing schools and moving further away from the city to improve upon the disposition of the autistic children and reduce the pollution they are exposed to. It could mean presents during birthdays that include iPads and other such electronic devices while the normal functioning children are left with not-quite-so-dandy toys to play with. Sleeping at night could become a nightmare, especially if rooms are shared. Communicating with an autistic sibling might be extremely difficult and proceeding meltdown utterly excruciating.
As for the holidays, families might need some help understanding why your sibling acts a certain way, and pictures with Santa might just not happen unless your local malls cater to special needs children with special hours dedicated. And if you are a little older and plan on buying them gifts yourself, you might need some help from those who have gone through all this already.
But what does it really mean to live with an autistic sibling?
An Interview with Samar
Q: Tell me about your family- how many of you are there? What are some details you would not mind made public? Is your brother the only one with autism? When was he diagnosed?
A: Both of my parents are immigrants that traveled to America in their mid twenties. My father is of Syrian descent and my mother is Palestinian and Spanish. We would be considered upper middle class and my parents owned their own distribution company. There are a total of four children in my family. I have an older sister (26), an older brother (24), myself (21) and my younger brother (19 turning 20). My brother is the only one of us who has autism. He was diagnosed at the age of two (1996) and his diagnosis was classical autism. My parents were completely shocked, their normal developing child who was hitting all of his milestones before any of the other three of us had suddenly lost everything. It was as if he was in his own little world.
Q: What is it like living with a brother who has autism?
A: Living with a brother with Autism was hard at times. As a child, only being a year and a half older than him, I simply thought he was spoiled and selfish. I would always get upset if he pulled my hair or tried to take my toys away. I also did not understand the reason as to why we had to watch “The Little Rascals” movie one hundred times a day and replay every scene over and over again. Or why when we went to Toys R Us he got to pick out three toys that he wanted to take home with him. (Rewards for good behavior) He would cry over anything and everything and at the time I did not understand that was his only way to communicate with us. As I got older I began to become more understanding, interested and more protective over him, as if he was my own child in a weird way. I began to try to work with him instead of thinking he was against me. I would try to teach him letters, numbers, etc.
Q: What are the worst challenges you face? How do you overcome the challenges?
A: My biggest battles were when my brother was old enough to comprehend that he had Autism and that he was different. It was something he emotionally struggled and dealt with for quite sometime. He kept questioning why he was chosen to have autism and why God could not make him normal like the rest of us. At those times I simply was just there for him as an older sister and I opened my ears and my heart to him, made him aware of how remarkable he is and his great accomplishments, obstacles and people he proved wrong that he had overcome and through time he began to understand that he is not weird, he is just unique but in a good way. Another battle was facing those who would make fun of him, or try to take advantage of him because he did not know any better. Or dealing with people who thought he would never be able to lead a normal life. I remember getting into a number of arguments with kids around the neighborhood, parents or even defending him when it came down to bullies at school. I constantly felt the need to argue and defend him. I did not overcome this until my brother himself was vocal about it, he told me to let things go. He told me that whatever those people were saying about him and his autism did not matter because they did not know who he was as a person and that he had accomplished more than they could imagine. They did not know that autism did not classify who he was as a person. I began to realize that people were uneducated about what autism was, it was not mental retardation, it was different. Instead of fighting with people I began to educate them and teach them about autism.
Q: What are your favorite things about having him as a brother?
A: My favorite things about having him as a brother, is that he has made me the compassionate and loving person that I am today. I am not sure how I would have turned out if he had not made such an impact on my life the way that he has and still does every day. He has taught me that no matter what obstacles come my way, I can face them head on. He always tells me, I could not talk, no one could understand me, and look at me now, no one can shut me up! Also, his happiness and positivity is contagious. He is the most loving person I have ever met and anyone who has met him can attest to that. Lastly, he is passionate and loves to learn. His brain is like a sponge, he can research a topic and still remember exactly what he read about it a whole year later. Most importantly, I love him because he is my brother, my Jalal, Autism and all. He is my baby brother even though he is twenty years old and much taller than me!
Q: What is your message to siblings of autistic boys and girls around the world?
A: My message to siblings of individuals with Autism around the world is, never be embarrassed of your sibling or resent them, that is the worst possible thing you can ever do to yourself and your sibling. Be there for your sibling, teach them, learn from them and most importantly love them. You cannot expect others to treat your sibling well if you yourself are not treating them well. Lastly, just because your sibling can’t communicate with you does not mean they don’t understand what you are saying in front of them or that their feelings can’t get hurt. Just because they can’t talk, does not mean that their brain and emotions don’t work. Have hope and faith and strive for their success, you and your families are the only ones who can advocate for your sibling, so don’t let them down!
Samar's story is similar to many others', where siblings of children diagnosed with autism are often forgotten in the equations.