World Autism Day: My Story and Living with Autism

Today is the 2nd of April, and so some of you may know that also means it is World Autism Awareness Day. Autism Awareness day was launched 9 years ago to raise awareness and conversation about the people living with autism around the globe. with this in mind, I have decided to share my own personal experience with autism.

Before getting to my own personal journey of loving and knowing someone on the autistic spectrum, I think it’s important to first describe what it is to those of you reading who are less familiar. Essentially, autism is a social development disorder which affects the cognitive, communicative and interactive ability of the brain. People with autism struggle with heightened sensory stimulation and need a lot of attention and support from their parents, teachers and siblings to ensure they can lead the most productive and happy life possible. Raising awareness is not the main goal at this point–understanding is, and even more important–acceptance. So this Autism Awareness Day I ask for all of you, to appreciate, love on, or simply accept those living with autism.

 

How has autism personally affected my life? Continue reading:

In 2004, my mum called my sisters and me into her bedroom. With the composure only a mother can have, she told us that our baby brother, Fewa, had ‘special needs’. While my sisters asked questions, all I could do was think about what this would mean for me, the already overindulged, youngest of three girls. Thankfully, my selfishness quickly wore off and Fewa quickly became the centre of our family. The role of an older sister always entails some sort of responsibility. However, the role of an older sister to an autistic sibling is a great deal more work. At first, it seemed like every day with him was a challenge, especially for my mother. I remember seeing my mum helping Fewa with simple tasks like brushing his teeth, helping him to get dressed, or feeding him lunch, with each day ultimately ending in exhaustion. Our family has been so blessed to have help from carers, but no one can deny the resilience my mother has had raising Fewa. It is the thing I most respect about her.

Every day, I see him becoming more independent. Our relationship is becoming less one-sided; I can truly say that we are friends. Fewa doesn’t need anyone’s sympathy. He is the most genuine and caring person I know. This is probably why I have never seen Fewa’s autism as necessarily and totally negative, it is a unique characteristic that adds to the complexity of the person that he is.

I am not naïve or unrealistic. I certainly have some gnawing worries about the future. Fewa will always need support of some kind. At age sixteen he still requires 24 hour help. I would say that the biggest misconception about autism is that people who have it are socially inept geniuses  – Rain man, anyone? Yes, that is true for some autistic people, but there is a reason the official term is “autism spectrum disorder”. It is a spectrum, and it can range from children who are not able to speak at all to children who can go to normal schools.

No matter what I do, I need to build my life with Fewa in mind. My parents won’t be around forever, and his care and well-being will become the responsibility of me and my sisters. It is true that consideration for Fewa will always affect the decisions I make in my life. Despite this, Fewa is by no means a burden. These worries do not reduce the immense love I have for my brother who has brought so much joy and shown me the purest form of love. To quote The Bard, “Love sought is good, but given unsought is better.” It is Fewa’s unconditional love that has shaped me into the woman I am today – a sister, a teacher, a carer and a best friend.

 

 I would love to hear your experiences with autism or your questions so please comment below!

 

Support those who are helping children with autism by buying a t-shirt (here)!

 

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  • nicole Johnson

    My neighbor is autistic, and I have known him my whole life. Since 12 years of age I have been by my neighbor’s side, helping him, teaching him, and assisting his parents whenever they’re in need. They call me an addition to their family because no friend has ever shown this much love to another person before. We live in Nigeria and the stigma over here is indescribable. And in the state we’re from, its even worse. My neighbor goes through hell and back everyday because not many people understand how to love and accept autistic people. Last year I deterred my admission to school abroad and decided to study here instead because I knew my neighbor needed me. God has sent me to this world to be his stronghold and supporter, and as difficult as it gets, I’ve taken it upon myself to be the one friend never leaves his side. I don’t know what it is, but I just feel obliged to help him because I believe that one day He will be free from this illness and he’ll be glad to know that he had an agemate who stuck by him through it all. So JTO, I hope you continue to be there for Fewa, because I know a lot of people who disown their autistic siblings, talkless of friends. As you said, it gets tough and worrying sometimes but one thing I’ve learned is that abandoning or forgetting them is never an option. God has given me and you this kind of situation because he has instilled a kind of strength in us that not many people have. My hope is that we share this strength to the world and teach others how to be a backbone for those with special needs. Goodluck to you, doll. you’re an inspiration xx

  • Highly-Favoured

    Awww! You made my day. Your story gave me solace. It strengthened me. I also have a son with autism,

  • Omagbitse Barrow

    Thanks for sharing this. It’s always inspiring to read from parents and siblings. Here is a video that one family put together to engage the public so that children on the spectrum can be better integrated into the larger society: https://youtu.be/MVu_9lmRAb8

  • Suleiman

    May Allah makes it easy for FEWA and other children with special needs (Amen)

  • Dotun

    Thank you soooo much for sharing your wonderful and inspirational story. I am a mother as well as a provider. The more people talk about this the better we all feel. Many thanks goes to your dear family for their love for other families living with Autism especially those struggling in one way or the other. God bless.

    • Thank you so much, it means so much. I wish you and your family the very best.

  • Bukola

    Wow! I am a mother to an autistic 4year old.He is my world and life,your story is very relatable and greatly appreciated my love to ur Mother she is a STAR and to ur brother he is a Rockstar❤ #AutismMother

    • The mothers (and fathers!) of autistic children are some of the most brave and selfless people I have ever come across. All my best wishes to you, your son and entire family <3

  • Remilekun Lawal

    oh waoh,reading this really means a lot..my fiance’s brother is autistic and i remember meeting him for the first time and trying to get to get a word from him being so hard..when i left their place and spoke to my fiancee about it,he was a bit cold and i just told him not to worry or feel bad about him because all i think is that they need more attention and care
    Thank you JTO for making giving a voice to the voiceless,this just melt my heart

    • Hi Remilekun, it was so sad to read your comment and I also fear that situations like your partners’ brother are quite common. A huge issue with how society views autistic people is the shame. In turn, people with high-functioning autism can be socially aware of this and feel like outcasts. I hope everyone follow in your path of acceptance… X

  • Laitan William Smith Alabi

    I’m a mum with autistic twins . They are still really young so I can’t say it gets easier just yet . One of them is in mainstream school and gets along just fine , the other is completely non verbal , goes to an autistic school and we still struggle with his needs as it can be hard to guess what someone wants when they don’t talk, but I guess living in the UK makes a massive difference to our lives .
    I worry about their future, however, it’s out of my control , there’s nothing else to do except live our lives as best as we can . Oh well, thanks for sharing your story.

    • Dear Laitan, thank you very much for sharing. I can’t imagine the difficulty you must face raising 2 autistic children. I agree that living in the UK can have a huge difference regarding the life of an autistic person (the stigma that remains in Nigeria is frightening). I wish you and your little ones the very best with everything in the future.

  • Sam Adel’

    It is well

  • Cèline

    The first time i heard the word Autism was in Feb 2017, from a father who loved his only son unconditionally and wasn’t shy to say his son had Autism. I asked what it meant, I particularly read about it . The first step towards helping is loving unconditionally, as such you don’t see him as a burden. I love this write up, may God give you all the strength you need to continue to be a shoulder to your brother. This had me in tears. ♥️♥️♥️

    • Thank you. Completely agreed, people with autism have so much warmth in them – it is so so crucial to reciprocate this love and affection.

  • William

    Thank you temi.. This piece came from a really emotional place and thank God I read it as well.. One time I got off at becontree (east London) to see my mate, I was waiting for the bus by the train station and I saw this really young man being bullied by some people, apparently he knew them but couldn’t say a word, he just kept shaking he’s head like he was a wet dog, I couldn’t do anything cause I was alone and the bullies were bout 5/6 people uno.. Yk how these thugs act sometimes, I later found out by the lady next to me that the young man was autistic, I felt like an idiot, I felt stupid tbh, so I walked up to him ( he’s assailants left already) and asked if he needed something to eat, he didn’t answer me, instead he looked up at me with these beautiful eyes filled with pain.. I literally lost it and I hugged him, gave him my coat and stood next to him, I didn’t say a word.. And thanks to God he’s sister came right up to the bus stop and found him, so he lives in becontree as well, not far from the station and he had only come out to look for he’s dog, he didn’t tell anyone before leaving the house… My first experience with an autistic person was clearly magical and touching.. Thank u for this.. X

    • Wow what a story. Thank you so much for sharing this. I hope more people follow in your example when coming across someone on the spectrum X

  • Damilola

    I admire you,my sis is going to be 25 years tomorrow and every time I think about her condition I break down totally,the aspect you said ‘parents won’t be around forever ‘ gets me thinking always like what am I going to do as I am the second child while she is the first, it’s definitely a roller coaster of emotions in which only those directly involved would understand. Thank you for rendering a voice.

    • Hi Damilola, thank you so much for your comment. That’s often the most troubling long term aspect of being related to someone with autism. I try my best to appreciate the here and now but also understand how worrying it can be. I’m so so glad you could you could relate. X

  • Nisi Nisi

    This had me in tears because my neice who is the most beautiful girl in the whole world is also autustic and I have the most love for her. I know the place you wrote this peice from and that has totally changed my perception about you , the fact that you building your life with your brother in mind is absolutely selfless❤❤

    • Hi Nisi, your message was so touching to read. Thank you so much for your kind words and let’s continue to love for the beautiful people in our lives X

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