When Noosheen Khan, 32, found out her then three-year-old son was autistic, she wasn’t shocked. In fact, she said “it was really peaceful” and she was quickly able to come to terms with it.
As a former teaching assistant who often worked with autistic children, Noosheen had the knowledge to cope and accept. She knew what autism meant.
However, this isn’t as simple for most parents who have little to no knowledge about what autism actually means for their child. For Noosheen’s husband for example, it was a bit more difficult as he didn’t know much about it.
Noosheen had seen signs of autism when her son Ismael, 6, was little so she had seen the diagnosis coming. She said: “I saw signs, no eye contact, not responding to his name. So it wasn’t like when you go to the doctors and they diagnose and it’s a shock — I think it made it easier as we had seen the signs.
“My faith and religion also made my son’s autism easier for me to accept. How in Islam it’s important to care and protect children with special needs, how they are a blessing from Allah. Other religious speakers like Omar Suleiman also spoke about children with severe needs being children of Jannah (heaven) and I saw a lot of parents seeking comfort from this speech too.”
The mum-of-two says her biggest challenge was telling her family members about the diagnosis in a way they would fully understand.
How Noosheen told her family
“My mum didn’t really know what it was, I explained by giving examples of how and why he acts the way he does. I gave the example of hand flapping and certain noises he makes, like mum would always say why does he make that noise, and now I can say he does this because of autism.
“My dad was understanding as he’s also a teacher — when Ismael was 8 months old my dad actually said he’s gonna be special, and at the time I was like what do you mean?
“My husband told his brother and they were like oh maybe when he’s older he could just be a boxer or something, and it’s really hard to explain to people that it’s a mental and a physical thing.
“To tell your family, my advice would be to show examples and tell them how it is. I had to plan with telling my in-laws with examples and explaining exactly what autism is. With my mum as well I showed YouTube clips of other kids and said see this is similar to what Ismael does.”
Advice for parents
“You need to have a strong mentality and not care what others think. One big factor is what others think. For example Ismael has tantrums on holidays and people look but you have to stop and think I don’t care what they are thinking. The other day he took off his shoes because of sensory issues and I told a lady who was staring that my son has autism and he has sensory needs.
“It’s ok not to care, you are doing the best you can. If your child is comfortable and you know their needs then that’s all that matters.
“My daughter Isra is three and I explained to her that Ismael is special when she was two, initially she didn’t understand and now she tries to help, she tries to settle him by tapping his head. It’s really sweet.
“I explained it to her as she saw what was happening and wondered why can’t bhaiyya (big brother) talk and why can other kids talk? Sometimes she’s upset as she wants to play with him but he needs he space. But I’ve tried to make her understand that he’s not playing because he needs space, not because he doesn’t love you.
“If you’re a parent waiting for a diagnosis - push for it, send reminders, ask what’s happening and ask for updates. I would also say ask your school for help.”
Social media support
A few years after the diagnosis, Noosheen decided to share her experience on social media in hopes of helping other parents. Though initially she was wary of negativity, she received a lot of support from other parents.
“In our south Asian culture no one really talks about it. I didn’t know if I should even post about it. Ismael is non verbal and a lot of parents were in the same situation so I said let me talk about it so they feel they can talk about it too.
“I posted and Alhumdullilah (praise be to God) lots of people responded. I was saying things like how to help them to in to school, and a lot of parents got in touch a few months later saying they’re now in the process of getting their child diagnosed.”