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Living with the Gift of Autism Through the Life of My Little Brother Happy Autism Awareness Day

Living with the Gift of Autism Through the Life of My Little Brother -

Written by Emaly Matari


Autism.

A word that sits heavy on the hearts of most Muslim families.

Defined by Mariam Webster, Autism is a variable developmental disorder that appears by age three and is characterized by impairment of the ability to form normal social relationships, by impairment of the ability to communicate with others, and by repetitive behavior patterns. 

Over the years, I’ve noticed that our community has an issue with accepting autism and its existence amongst followers of Islam. Just saying the word out loud brings discomfort for some. From my experience I’ve noticed that some families who follow Islam tend to be in denial when their child has been diagnosed with autism. Some even going so far as to claim that their child’s diagnosis is because of the “evil eye” or someone wishing harm upon that family. For some odd reason, our community equates an autism diagnosis with something like a death sentence and it holds the same stigma as that of someone who has contracted some type of STD. What we fail to teach our families in the Muslim community is that autism is not an end-all be-all diagnosis. Your child’s life is not destined to be anything short of what you help them make it to be. We should be reminding them that just like any other child, if an autistic child is raised with love and patience and compassion and proper direction, they have the ability to succeed just like anyone else. Children with an autism diagnosis are not a curse, quite the contrary – they are blessings. Do not be resentful, be thankful for the opportunity that God has presented you with. As caring for an autistic child or a child with different needs is an honor – one that helps pave the path to Paradise for parents.

Your child’s life is not destined to be anything short of what you help them make it to be

I was too young to understand what any of it meant when it happened— “it” as in my Living with the Gift of Autism Through the Life of My Little Brother -brother’s Asperger’s diagnosis. The doctors told my parents that he would never talk, he’d be unable to learn properly in school, and that he’d be nothing close to a “normal” kid. Devastation shortly made it’s way into in my family’s life. My parents, together at the time, knew that it was now their job to do everything that they possibly could to help him conquer the limitations being set for him. Throughout my lifetime I’ve witnessed years of Bilal attending therapy, special classes, and social inclusion groups – all aimed at helping him gain the tools he needed to be successful later on in life. In other words, they were teaching him how to be “normal.” Whatever that is. As for myself, I know no other life than being his big sister and number one supporter. And I wouldn’t have it any other way.

As much as my family was struggling to learn how to adapt to the type of care Billy needed to succeed, he had his own set of struggles and feats – but not the type you’d expect. Billy was never really the type of kid to feel like he didn’t fit in. He was always in his own kind of world inside his own head, which I think distracted him from his differences. But it was never in the he-didn’t-know-how-to-socialize type of way, not at all. He was just more interested in things like species of whales, reading up on the history of NASA spaceships and perfecting his drawings of Sonic the Hedgehog. I think it’s what helped him grow into the young man he is today honestly, not knowing that he was “different.” The majority of his struggles were related to his emotions and him not always knowing how to express them “appropriately” (by society’s rules). Unlike “normal” people, Billy wasn’t able to lie about how he was feeling – he couldn’t hide from his emotions. If he was happy he’d wear a smile from ear to ear and make sure everyone knew it. If he were sad or angry, he’d make sure you knew that too. At times, it would turn into embarrassing outbursts in public – resulting in strangers glaring at us like we were enjoying these moments. Like they were something we had control over.

Living with the Gift of Autism Through the Life of My Little Brother -

Billy right after he passed his driving test!

As Billy got older, I watched him accomplish things doctors told my parents they shouldn’t even bother thinking of. He’s an excellent student. The first thing you notice about Billy is how incredibly smart he is. He’s a genius really. His social skills developed quickly as he matured and he actually started to enjoy being around people one day. He never used to be able to hold a conversation with anyone. Now, the first thing he asks me when I walk through the door every day is, “Hey Emaly, how was school today?” or “Hey Emaly, how was work today?” And he’s genuinely interested in my response and whatever conversation follows. He loves to introduce himself to new people – which I think comes from the role models he’s had throughout his life. He’s a great baseball player. He’s adventurous now. He even passed his driving test! My mom and dad did such a great job in raising him I don’t think it’s possible for him to have had a better set of parents. Despite their divorce, they always put his feelings and his needs first.

As Billy got older, I watched him accomplish things doctors told my parents they shouldn’t even bother thinking of.

Billy bases his feelings and actions off of the energy he picks up from the people around him. He’s an empath. If you are sad – Billy is sad with you, too. If you’re happy or excited – Billy is happy because you’re happy and he’s excited for the things you’re excited about. If you make him uncomfortable or give off dangerous or shady vibes, he’ll just ignore your presence. I think it’s a defensive thing. Which is great because he won’t pretend to like you like other people. But if you’re a good person, he will give you 110% of his attention and respect. Everyone who knows him has helped him become the wonderful person he is today. Our parents, our grandparents, his friends – and the fact that we always have 578 awesome cousins around to help him grow out of his comfort zone is definitely helpful.

Reassurance helps him excel. If he fails at something, we make sure that he knows that everyone fails, and that that doesn’t mean you ever stop trying. My worries for him are the same worries any big sister has for her little brother. I worry for his safety and his happiness. I worry for him in school and while he’s playing sports. But then they go beyond that. I worry that in new environments he won’t be accepted by people who may not know him and how kind and gentle he is. Billy knows that he will never be alone in life because I will always be here, but I do hope that one day someone will love him and take good care of him.

Living with the Gift of Autism Through the Life of My Little Brother -

When I was younger, sometimes I’d ask God why He gave my family such a difficult (at times) task of giving Billy the care he deserves. I only questioned it because I saw the difficulties my family was struggling with – I had missed the beauty in my family and in my brother’s diagnosis. Growing up with an autistic brother, I was always worried about him. When we would go out with family and friends, my eyes would be fixated on him the entire time and nothing else. I stressed to watch him – helicopter over him – and there would be times where I wasn’t able to enjoy myself because all I wanted was for him to have the best time. But as much as I wanted to smother him with my love and attention and protection, he let me know, in his own way, that it was time for me to back off and let him navigate his life with his own decisions. He taught me so much – he still does.

He has helped me learn more about myself than anything anyone could ever teach you about life. He taught me patience. He taught me love. But most importantly he taught me responsibility. I have made a lot of sacrifices for my brother, and although they aren’t all ideal – I thank God for giving me the gift of my brother in my life. The gift of a life long best friend who I know is going to be such an amazing husband, father, and uncle to my children one day – because he’s already an amazing son and brother. He is caring, and gentle. He is humble and kind, and at times I know that if more people were like my baby brother, this world would be an even more beautiful place – it’s as beautiful as it is already because he’s in it.

Living with the Gift of Autism Through the Life of My Little Brother -
To learn more about Autism visit www.autismspeaks.org.

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