This post is in honor of World Autism Awareness Day which is celebrated on 2nd April. Each Year On this Day, people throughout the world come together highlighting the needs and dreams of people living with autism.
Please Find below a story of a sufferer and her brother’s Autism.
“Don’t Ever Touch Him Again!” my mother told me in her blunt voice, her face was red and she was trying hard to control her anger. For a second I felt guilty, OK, it was my mother who was cooking the Afghan Rice and not him, I shouldn’t have kicked him in the back. I could hear him crying and my father trying to soothe him. This is how I grew up, always getting reprimanded by my parents for not being nicer to my younger brother. I was always ill at ease with my brother. My brother is autistic. He was born with autism. All I can remember from my childhood is how our lives were always structured around him and his routine. We had a very sparsely furnished house with thick carpets, cream walls, no washing machine, and simplest calligraphic on the walls. My father is a builder and he built a conservatory which was labelled as quite room for my brother. It was also used as a prayer room. I would often come home from school and find my brother sitting in quiet room all by himself lining up his trains. Growing up I really felt my parents were more favorable towards my brother than me.
The second shock for them was me and my refusal to eat with family. I was a very difficult teenager and very fierce in temperament. I always wanted everything and I was deeply unhappy with my family. I think being an over achiever does that to you. I was 14, when dieting syndrome was born. I started restricting my diet and became obsessed with eating healthy. I spent my teenage years being preoccupied with my weight and being a certain shape. If anyone ever approached the subject, then God help them.
After leaving education, I landed a job as an event planner with a luxury wedding and event planning company. You need to have stamina to cope with the physical demands of this role; there’s lots of demanding work behind the scenes and at times you put in 18 hours a day.
I met my husband in London and soon we were married. After marriage, I moved to Dubai and joined my husband’s family company. I think the day I got married and moved away was the happiest day of my parent’s life. In Dubai, I was completely lost in glitz and glamour and because of the nature of our business, we were also out socializing most of the times. Here what I spent on average in a week equalled to my family’s monthly budget in UK.
I was praised for my physique, my wardrobe and my credentials. With time, I became very conscious of the poster image I had spent half my life building. In order to maintain this physical image, I spent nearly half my earning on wardrobe changes, personal trainer, chef and monthly spa visits.
Our company was scaling new heights. We had new contracts and everything looked good, the last thing I expected was a nervous break down. I remember waking up one morning and thinking I don’t have any friends in Dubai. I have clients, associates but no real friends. I don’t go walking and there are no home cooked family meals. It was Anorexia/Orthorexia that affected my social relationships because I was always being so secretive. I became disoriented and started hyperventilating. I felt I was being asphyxiated and my husband took me to see a doctor. He diagnosed me with depression and burn out. I was told to take three months off work.
I don’t know how we managed, but we flew down to UK to my parent’s home. They were going to look after me. I can’t deal with him, I told my husband. I just couldn’t bear to see my brother, him flapping his hand and getting excited, but I had no other choice, there was no one to care for me in Dubai.
I hadn’t seen my family for three years. We fell out three years ago over my brother. My sister-in-law was getting married. I was ashamed of my brother and his disability and I remember telling my parents to come to wedding without my brother. I didn’t wanted to get embarrassed. At the end no one from my family turned up. This then led to the biggest argument of our life and I simply refused to speak to them for years.
My parents greeted me with concern, we were awkward around each other. And the person I most dreaded seeing greeted me with a single stem of daisy and a box full of gifts. Nine in total. One Birthday Gift for each year and Two Eid Gifts for each year.
He had helped my mother to put together a feast for us. I saw crisps in bowl, my favorite loose Afghan green tea on table and a plate full of his favourite biscuits.
In that week in UK, I simply slept through everything. I was simply exhausted. My parents raised the alarm. It was not until I saw my local GP who referred me for treatment that my illness got the label ‘Anorexia Nervosa’. I honestly would never have gone for recovery, never if it wasn’t for the bone density test and being told I had the spine of a 70-year-old caused by years of anorexic diet. As we looked into osteoporosis treatment, I was hit by another wave of depression. It’s shocking to learn there is no effective treatment for reduced bone density in patients with anorexia nervosa. Looking at the meal plans, supplement drinks and therapy chart, I felt my life was simply coming to an end.
Before my breakdown, I would have blamed my family, especially my brother for everything, my stress, my Eating Disorder. For years, I could not forgive my parents for not giving me the childhood I deserved and perhaps I could’ve said it was this childhood and my needs not being met caused that my Eating Disorder, but it’s not. I would ruminate would reflect back on my parent’s poor lifestyle and get angry. But my brother, my family did not cause my eating disorder and this was very nicely put forward to me by my therapist.
That Evening, I looked into my brother’s eyes and I realized he doesn’t remember anything about cold war between us. He doesn’t remember the ill-treatment I gave him. He doesn’t remember the names I called him or how I would deliberately do things to provoke him. He only sees me in one light, in one angle, ‘I’m his older sister’. What led to my ill-health was my unhealthy feelings and my mind.
they come to me
After 10 weeks of rest and doctor visits, I went back to Dubai, promising to eat and to take care of myself. I was rebuilding myself after the break down, I started seeing a psychologist and started taking my medication for anxiety. As I tried to walk through the stages of my illness, my family came for a visit. My parents were concerned, my brother wanted to see me. Before my break down, I would have balked at the idea of them visiting me in December which is our peak time for business. And for the first time in my life, I made them a priority. I prioritized my work schedule and took unplanned leave.
I can’t forget that warm, genuine, hug my brother gave me when he saw me. It will stay with me forever. That night, Dubai simply lit up.
As a luxury event planner, I wanted everything perfect, house, food, entertainment but with my brother, I could not do that. Shopping in crowded malls would just make him more anxious more tired. So we spent his Christmas break doing things that were so simple and so unlike me.
He saw the mosque and we had to go there to pray. This was my first visit to Mosque in Dubai.
We went on a desert safari tour and he was so happy seeing a camel that it even made my mother cry. I’ve been on many desert safari tours with clients and my husband’s friends. But this was a novel experience, and one that I’ll remember forever.
He Loved Night Time and all the Lights.
We ate His favorite Ice Cream Every Night.
And Here Moments spent in His Company away from the Competitive World of Work, Consumerism, Appearances and Fast Paced Life and Overly Priced Food, I learn My Brother is From Heaven.
He forgives I find forgiving and letting go very hard, but with my brother, you can hit him with the brick and next day, he’ll come back and he’ll hug you.
No Lies No cheating; He doesn’t have the ability to do any of this.
He doesn’t compete. I am a very competitive person and I work in a very competitive and stress related environment, it’s as simple as that ‘You Snooze You loose AED20,000’. But he’s not competitive at all, he’s in competition with no one. He doesn’t see life as a rat race and I envy that. Before my break down, my worst fear was going back to my old lifestyle. I had many insecurities. I was insecure about my poor background and of credit crunch and I just had to be on top in everything.
He cares. Ever since my mother told him, I have weak bones. Every night in UK, he made me a cup of hot milk. Even at Coffee Shop, he forces me to drink Latte.
He’s always the first to apologize. There are people who think apologizing makes them lesser of a person, but he will apologize and then he will ask’ You forgive me right’?
He doesn’t have desires. I have love for fine things, my husband shares my passion for finer things in life as well, but my brother is immune from all that and I envy this. He’ll wear anything my mother buys him, clothes from Oxfam, Sue Ryder, any charity shop.
The cost of Dining with him is not even 5% of what we will pay at other restaurants. There was only one trip to fine restaurant of Dubai . My brother wasn’t comfortable with eating the food he didn’t recognize, no matter how brilliant the presentation.
So there were no further trips to finest restaurants of Dubai or Breakfast at Mo’s. Instead it was simple dining from the places I had no idea even existed in Dubai.
For years, I’ve gone through the stress of selecting Fine Dining restaurants for our Clients, Friends and Family and Everything has to be fine and high-end, including buying a burger.
But mostly My Brother has a pure heart, a pure soul which not many ordinary normal people have.
My Message: If you know someone with autism then please try to understand them, honor and respect them for whom they are. Do not discriminate them or try to control them. I spent years trying to discipline my brother. Looking back, I feel ashamed of my behavior. I am grateful for a chance in life to connect with him, to understand him and to be a sister I never was.