I wanted to write something about the topic of Autism, because when I looked back I have never seen this topic addressed by anyone in our Muslim community. Autism is a growing issue in the world as one in 68 children are diagnosed with this condition. I wanted to address a few issues about dealing with Autism in hopes that it may help someone who is a parent, loved one or a friend of someone with a child who has Autism. I’m not going to go into what Autism is exactly, because that would be a lengthy discussion and there are plenty of websites and books dealing with this topic. I will just say briefly that it is a neurological disorder that affects ones social and communication skills. It is termed as being on the spectrum, because there are so many different variations of Autism that every child is different and they all have different needs according to how many of the indicators the child has.
When a young couple gets married they have hopes, plans and dreams for the future. They want to travel the world, find a place they can call home, raise a family, etc. Once they are blessed to have a child their world turns upside down in a good way. What I mean by that is they are so happy to now have a child that everything in life is now all about their little bundle of joy. They stop thinking about themselves and just plan and daydream on what their child will be when they grow up and all of the things they want to teach them. After a few years they start to notice that their child isn’t reaching the milestones that the other kids their age have met, but still remain optimistic saying he will catch up. As time goes by, they start to notice that maybe their child doesn’t respond to his name when being called, is reclusive, repeats actions over and over again like flapping their hands, spins in circles over and over again, lines all of his or her toys in a neat row side by side instead of playing with them the regular way a child would play with them, the child cant understand things when you are asking them to do something, doesn’t speak or tries to speak but has trouble getting the words out. These are all signs that a child with Autism may have. After the long wait to get an appointment with a Child Development Specialist they find out that their child, who is their only concern in this world, has a condition that doesn’t allow them to think and process information like the rest of the kids. He thinks differently and can’t be taught by the traditional way and style of parenting that most are familiar with. This can feel like you have been hit with a ton of bricks and is overwhelming to say the least! All of the things you wanted for your child to become seem so far out of reach now. You are having trouble just getting him to communicate with you and to understand you when you tell them that you love them. Do they know how you feel? Yet worst of all is that your child is going through so many difficulties and is unable to express himself through words and you are unable to do anything. You want to be there for him and help him but not sure what he needs and are just left feeling hopeless at what to do.
For a parent who is going through this struggle they really need a strong support system and someone to turn to. First and foremost, they must rely on God and then seek support from family, friends and community members. They may and will encounter all sorts of responses when they present their struggle to people surrounding them. Some will say it’s the Vaccines that you gave your child. This in no way helps the parents, because it makes them feel as if they were the ones who gave their child this and can cause one to start blaming themselves and going into a dark world of depression. After all, if a parent got their child vaccinated they were only doing what they thought was best in trying to protect their child from harmful diseases. How would they ever know something like this might happen? Some people in the family might blame the other side and go back and forth about whose fault it is genetically. This causes nothing but harm and fighting amongst family members. Who cares where it came from?! What matters most now is how we can come together and help this child who desperately needs our attention, support and love. Some may come and say your child has been diagnosed with this due to some sins you committed and God is cleansing you from the sins by this. I mean how does the person saying this even know that this is the reason? It is only an assumption on their part and makes it seem as if it is the parents fault for this and is very unsympathetic towards someone who is facing this difficult situation. After all Autism is by no means a curse from God, rather it is just a learning and developmental disability. This doesn’t mean the child is un-teachable, rather he will simply not learn according to the conventional methods of education and instead he would need an individualized learning plan that works for him. People with Autism think differently than we do, but in some cases they are geniuses. Some famous people in history have been suspected to have or had Autism such as: Albert Einstein, Vincent Van Gogh, Mozart, The creator of the television show the Muppets, amongst others. One famous person that I can think of during this era who has Autism is the famous actor and was also the writer of the movie Ghostbusters: Dan Akroyd. Lastly, apart from all of the other types of reactions I mentioned above, you will have people who will comfort you and tell you that they are there for you and your family in any possible way they are able to help. They encourage you to be the best parents that you can be and they love your child even more than before. This is the type of response that a family needs when they are going through this whirlwind of emotions.
It has been very hard for me to soak all of this in when I recently found out my son Ali, who is almost 3 years old, was diagnosed with Autism. As a man we are hardwired to fix problems when they arise. I just kept thinking that there has got to be a way for me to fix this. I have worked in DC and Virginia with adults who have Autism since 2008, but I only transported them from their homes to their day support programs or to their jobs. Even though I had interacted with them over the years I still was not fully aware of what Autism really was. So, I went to a bookstore nearby and bought tons of books on the subject in hopes to learn as much as I can. I am a researcher by habit and I was searching for the answer to this riddle. I found out that there is no cure for this condition, yet it can be improved through intense therapy sessions that are sometimes as much as 40 hours per week. I only want what’s best for my son and to be there for him as much as I can. I don’t know if he understands me all of the time, but I do believe that he knows I love him unconditionally. I often find myself driving in the car on my commute to work crying as I think about my son suffering through this and how frustrated he must be when he wants to tell us something, but can’t conjure up the words he needs. I watch him as he plays with other kids, but when they talk to him he just stares back at them, laughs and runs off to continue playing. One little 5 year old girl innocently asked me if he was okay and why was he acting weird. I assured her that he was okay, but deep down inside I couldn’t help but to wonder and be frightened at the thought of some other children bullying him when he attends school. I often, as any father would, think about all the dreams and aspirations I have for him and wonder if he will be able to overcome this obstacle and become whatever it is that will make him happy. I know and have faith that he can do it, maybe not by the traditional way of learning and doing things but through his own unique way he can overcome this. I will always be thankful, supportive and proud of him no matter what.
I feel that this is a test from God and I pray that he strengthens us through these times. I know that He can aid and assist my son to help Him overcome this challenge. So, I will always continuously call on Him and also do everything within my means to make my sons life the best that he could ever imagine. Knowing this brings to mind some verses and narrations that I would like to end this article with and I pray that this article will help and benefit those who read it:
“And know that your possessions and your children are a test, and that with God is immense reward. And know that your possessions and your children are a test, and that with God is immense reward.” Quran 8:28
Imam Sadiq (a.s) said: “A believer is reminded (of God) once every forty days by either a tragic event of a financial or physical nature for himself or his children, or a sort of sadness which he does not understand the reason for. Then he will be rewarded for this.”
“If a believer only knew what the reward for perseverance in the face of calamities is, he would always wish to be torn into pieces.” Mishakatul Anwar Hadith 1707 & 1713
By Mateen J. Charbonneau
aka Abu Ali
March 17, 2016
New Videos on Autism Awareness and Acceptance by Sheikh Mateen Charbonneau
2 thoughts on “Dealing with Autism”
Salaam Alaikom wa Rahmatullah, Mateen
This was a beautifully articulated and moving piece. Thank you for writing your thoughts on it and sharing your insights with us. It’s really tough to try and capture in words everything I felt the need to say in response to reading this, but I will try to get my main points across as best I can.
At the outset, having had the pleasure and barekat of getting to know you seeing your family dynamic over the years, I say with complete confidence and assurance: I am very happy for Ali. MashaAllah, he is blessed with very thoughtful and loving parents and brother—people who are giving him the two most important things at the start of life: unconditional love and learning.
I know that the student/scholar/teacher/speaker that you are, you understand and appreciate that to learn, it is vital to be both student and teacher. Ali is surrounded by three people who give him ample opportunity to do just that, and in the most nurturing of environments. I’ve learned so many things from Ali, second hand, having heard you talk at length about what he has taught you.
Your piece gets to the heart of what it means to come face to face with Autism. That the life ahead is one full of unknowns, full of questions, full of fear and hope, struggle and excitement, pain and joy. I know I’m not telling you anything you don’t already know, but I’m compelled to still express this. You have an incredibly tough journey ahead, it’s clear. But tough isn’t negative. Tough isn’t bad. Sure, tough means hard. Tough means difficult. But tough means rewarding. Tough means potential. Tough is the very definition of Jihad. Tough, hard, difficult, they’re all just different names for the road to bliss.
Tough means that you get to start with a hundred questions, and along the way you’ll face hundreds more. But each question offers you a chance for an answer, for insight, for discovery. Each moment you expend patience, aside from the limitless blessing and thawab, gives you inches of personal growth. Inches, before you know it, become miles.
And yes, sometimes, that patience will be tried in unexpected ways. You touched upon it eloquently in your post. There are too many people out there who will rush to read to you from their copious books of philosophy of nature, pontificating on why it is that this has come to happen. It doesn’t matter how many studies have proven that a link between Autism and vaccines doesn’t exist. It doesn’t matter how little we as humans can really know about God’s intentions. It doesn’t matter how little we may know about Autism itself. People are quick to say things they don’t realize are hurtful.
You said it well yourself: “I mean how does the person saying this even know that this is the reason?” Exactly. I am so adamantly opposed to people who claim to know God’s intentions. But I take that opposition a step further. I don’t know their intentions, either. So whenever I’m dealing with something, and people try to explain to me what caused it, I too think, “who cares what caused it?” But I also remind myself that I don’t know why they’re saying this. And I give them the benefit of the doubt: Perhaps it’s the only thing they know to say to me right now. This is them trying to help me. It’s not helping, but at least I can assume they mean well.
I’m reminded of a Hadith: A lover of the Ahlul-Bait approached his Imam and said to him, “I love you and your family so much, I curse those who don’t love you as much as I do.”
The Imam’s reply was something to the effect of: “By that logic, I should say I love Allah so much, I will curse those who don’t love Him as much as I do. That includes you. You don’t want me to curse you, do you?” Wisely and simply, the Imam expounds a lesson on personal potential. Each person has to strive to their own personal best. We look to others, stronger than us, because they can help us grow. That’s why I read your blog. But we don’t benefit by begrudging others who have shortcomings that we don’t.
Those people who talk to you in these hurtful ways that you describe, they don’t have your patience. They don’t have your thoughtfulness, your “Inshiraah-al-Sadr.” So don’t blame them, but realize that somewhere, deep down, there may be a good intention without a map. They don’t know how to get that inner kindness out, so they grasp onto what they can, be it a wayward belief, a mindless explanation, or an uneducated suggestion on what you should do. Smile, and know that they are offering you another opportunity to receive God’s rewards for displaying your patience.
Mateen, you are no stranger to adversity. But equally, you’re no stranger to strength. I’ve seen you face difficulties head on, with quiet restraint, patience, and dignity. I say again: I’m happy for Ali. He’s lucky to have a family who cares so deeply for him, and is so dedicated to his success.
The wonderful thing about children is that at the peak of the difficulty of raising them, they will remind you how precious they are, and how worth it all of your efforts are.
As you explore the field of Autism and equip yourself to be the best father you can be for Ali, I would like to make a humble recommendation. I think you will get great benefit from learning about the life of one of my personal heroes, Dr. Temple Grandin. Dr. Grandin grew up with Autism, at a time when most of the world had no idea how to deal someone with her needs. She overcame a lot, enduring all kinds of labels, to not only become a renowned authority in the field of animal science, but also a leading figure in Autism studies and research. I would recommend reading her book, reading about her, and watching or listening to some of the interviews she’s done. She’s a testament to how much the human mind can accomplish, and how little difficulties along the way can do to stop us.
I am thankful for the strength and faith you have. Not only as a friend, but also as someone who learns from and gets inspired by you. You and your family have a community of friends and loved ones behind you. And I’m honored to be among them.
May Imam Mahdi’s grace forever shine upon you and your family.
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