Autism awareness, acceptance and inclusion are all a big bubble; despite a lot of ongoing campaigns, internet full of rich content on Autism, breakthrough research and a lot of happening all around, we are often surprised by a series of events.
- The stare that follows you while parking in the disabled spot.
- The unpleasant comments of public behavior when your child has a meltdown.
- The expert family & friends who tell you what you are doing wrong when your child eats only specific foods.
And a lot more, just because the child doesn’t look like having a disability.
That’s not it, sometimes autism aware people tell you all great things about autism superpower, without knowing that there’s an unlimited array of possibilities between “autism is a super power” and “autism is a profound disability”.
Honestly, acceptance is not an easy affair, even for the autism parents themselves. It takes its own sweet time to accept the difference and devise a plan accordingly. This article comprises wise words from some beautiful Autism moms about their journey to acceptance and what in their opinion it takes for the society to accept and include autistic individuals.
Hena (Ibrahim’s mom)
I often think, “what if I didn’t have an autistic child?”. MashaAllah ,I have 2 healthy neurotypical children before my son was born. I didn’t even know what autism was until it was thrown at me a couple of years back. I had vaguely heard of the term thinking it to be, what erstwhile was known as “mental retardation”.
When my son’s pediatrician told me to check for ASD signs, I had to google it and I couldn’t read any further as I was in complete denial. However for the next 3/4 months I dived into research, rounds of consultations with psychiatrists, development pediatrics, ENT, Psychologist, Behaviour Analysts, specialized nurseries, educationist, neurologist and parents.
It was then I realized that I am into another world now! Then I started taking notes of what my girls would talk about their special friends in class. Earlier, I would just say, good u must help!
Now I would say, involve him.
I mean to say is unless it hits us directly , We don’t empathize.
Why would a parent, with normal kids, bother about my child on the spectrum?
Is something which is always at the back of my mind —- as I have also been there once!
Geeta (Vivaan’s mom)
I kind of agree with the above but I have a different perspective. I am a handicap myself (left hand lost in an accident 21 years back). I’m well covered most of the time, so people don’t know but the minute they see and know the amount of help and care I receive from strangers around me is unreal.
Empathy is something we humans have and no other species have it. The moment people see someone with a disability, most of them offer help selflessly. The bigger challenge for the society towards autism acceptance and inclusion is that autism cannot be seen.
But I believe if anyone sees an autistic kid and understands that the kid is autistic they empathize, offer help and try to include. So, we have to be our kids’ advocates anytime and anywhere possible.
For instance, I went to Dunkin’ Donuts over the weekend with my son. Clients before us ordered a box of 12 donuts and were deciding which one to take (taking their own sweet time and rightfully so). I told the cashier on the side after waiting for 3-4 mins that my son is autistic and his waiting time is about to get over. Please can I get one donut. He immediately gave it and in fact said, “pay later, let him eat first”.
G (G’s Mom)
I say most of the people around us do understand, but it hurts when people (we want most to understand), or I would say relatives do not understand. Or probably, they don’t want to understand, because why would they want to. After all, everything is alright at their end.
Qurat (Suleman’s mom)
I would totally agree with Hena, though I see some exceptions, i.e. there are people who are not direct victims of autism or any disability, but still they are keen to learn about differences and accommodate the different individuals.
I feel blessed to have friends who have a typical child/children yet they understand, welcome and involve Suleman.
Back in 2012 when we just moved to the new city. For a couple of weeks or probably a month while returning home from work, I used to see a big really big billboard on the main highway. It had a picture of a child who looked absolutely alright, in fact he looked too cute to say or think anything could be wrong with him.
The billboard said something about autism which i do not really remember, but i cannot forget that cuteness overloaded face. Looking out from the metro window every day I used to see the child on the billboard and wondered what’s the point of putting such a beautiful child on the billboard with some words/statement that doesn’t seem to be something normal.
I didn’t even bother to google about what autism is, until it visited us in person to stay with us for a lifetime. I cannot imagine how much I studied about autism in published materials and meeting people in person in just a few years, connecting the dots and finding my own way. And of course I will be learning differences throughout my life now, because every day brings a new question that I need to answer and answer correctly.
Thinking about what if my child was not autistic scares the hell out of me. I mean, yes there was a short period of time when I questioned “why me”, but now I know “why me”. Thinking that I would not have seen the world I saw and will be seeing is a difficult thought. I don’t want to think about how shallow life would have been.
J. (M’s mom)
I think what hurts most is relatives being judgmental a lot, while things can be entirely different if they are supportive. My child goes to a regular school but one of my aunts told my mom the other day, “why don’t you send the child to a special school”.
What people don’t understand is that special schools do not work equally for every child as each is different. And being a parent and primary caregiver, I know what’s right for my child and what’s not.
I am often annoyed at such unsolicited advice, and want to tell people to mind their own business, but one amazing thing you learn with a kid on the spectrum is PATIENCE.
P (A’s mom)
My introduction to autism was much earlier or rather special needs was very much earlier. Coming from a family with special needs around me I always loved to be with them.
In fact a CP niece of mine who is technically my age completely in a wheelchair tied to it and cannot talk. But still the happiness that she gives when she sees and when we treat her like one of us, that’s the best part.
Same thing with my nephews with autism and Down Syndrome. The moment you give them your time for talking about what they really want to talk about, they’ll just love you purely. That’s why I love spending time with my my parents more, because they listen, understand, offer help and if nothing they tell you that they are always there for you.
I still remember what my cousin said about his daughter with CP. Her left brain is not doing it’s job completely but the right brain is so good, that she understands what marriage is and having a normal life etc. that time I was getting married and I felt so bad because apparently she was asking her parents to marry her off that time in her own non verbal way. Anyway that’s my personal experience.
Just saw Qurat and Hena’s message. A parent will be open for her child to mingle with our kids because 70% of the time I see any parent they’ve had a case in their family or immediate family. It just depends. If my mom would’ve stopped me from asking why is Sandy in wheelchair I would never have understood disability anytime. And would never have been so close to her ever. That’s my take.
S (E’s mom)
Finance executive with no family history of any condition,1st son with absolutely normal pregnancy and timely developmental milestones as well, was my life in nutshell before Autism. Life went upside down when regression happened at age of 2.
When pediatrician told me about Autism my question was so how long will be medication? I was so naive. Doctor understood my level and explained me in detail what needs to be done and how life will be. I told this to myself this is it ” The end” , no point in living such life.I was at verge of committing suicide along with my child thats where my family intervene, they sensed my fear and insecurities. They helped me through initial stages of denial, grief, anger and built up my confidence by helping me and my child in every way they can.
Later when I met my tribe here in Dubai where my child was accepted the way he is. We were welcomed every where without any judgement and question then came acceptance and content stage within me. I cant write and express in words how much we both have gone through to come at this stage comments like:
- She knew about it while she was pregnant and must have hided it from husband.
- If she would have taken timely decision with consent this would not have happened.
- Why does he always make such sounds why don’t you stop him.
- 6 years still in diapers……
- why cant you tell when he will be completely normal
- I think you are not giving him proper attention how is this possible i cant believe you
- He is just like my son will invite him for next birthday party if you are in town(where all family members were invited except us)” list goes on and on.
They say you need a village to raise a child.So we don’t have village but we have our own small world where we love each other unconditionally. Thats what Autism has taught me.
The way I look at life is totally different than how it was before autism came in our life. Life was shallow and now I see wonders every day SubhanAllah. Ignorance and lack of awareness is prevailing everywhere and I cant blame them as I was like them. So no expectation with 24 7 advocacy in polite manner really helps.
Asma (Mohammad Waiz’s mom)
Being the youngest and most pampered in my family, I was used to taking life very lightly. Even my husband knew that and always pampered me. Then after one and half years of being married we got the happiest news of our lives. We were expecting our first baby boy.
Mohammad Waiz Fawad was born a very healthy, chubby and beautiful baby like the ones we see in the magazines. Everyday was a new beautiful day. Teething was a little late, walking was a little late. Everyone said that’s ok…. boys achieve milestones slower than girls.
Never in my worst nightmare I could imagine there’s something “wrong” with my baby boy.
It was at the age of two that Waiz started regression in speech. My motherly intuition struck and we consulted a few professionals. And That’s when I first heard about “Autism” and it’s red flags.
I can never forget thoseTwo Days; one when Waiz’s Nursery director said to me “I’m not asking you to remove Waizi from here. But he needs a Special set up where he’s given one to one attention”, and the second day, when after weeks of trying to get referrals and appointments, on November 4, 2013, Waiz was officially diagnosed with Autism.
I remember the Clinical Psychologist and Autism Expert saying to me: We know you are an educated and sensible woman, and I said I’m ready to hear what you are about to say. Please say without hesitation. And while saying that I was shaking from within.
Cut short to 2021, I’m mentally at the stage where I know I have a duty to perform with all my love, passion and honesty. And that life is a beautiful blessing especially because of Waiz.
He has made me a far better, more mature and compassionate person that I could never be otherwise.
Now I know what I am supposed to do in this life. Now I know the real meaning of ” Faith and Love Can Move Mountains “