Ambreen Suhaib remembers the minute her perfect world turned upside down. The twins were two years and seven months old and only recently learned how to walk; they would insist on keeping on their toes. Their milestones had always been a bit off, but the elders in the family – and her husband – kept dismissing the delays as a ‘twin thing’.
The expat says: “Then when I went to my home country, I noticed that they were very anti-social, they wouldn’t mix with anybody, if people were sitting in the living area, they’d sit looking at the wall; there were things that were really different so when I came back to Dubai, I started observing them even more. They never responded to their name – Ahmed and Haadi. My husband said, ‘They might have a hearing problem’, but the moment I would say, ‘YouTube’ or ‘iPad’, they would instantly look back. Then I knew something was wrong.”
So the Dubai-based mum gathered her courage and in spite of the family telling her she was overreacting, she headed to her paediatrician, who referred her to a psychologist. “I still remember that day – I’ll never forget it,” she recalls in an interview with Gulf News. “We were sitting outside the clinic and my husband said, ‘It’s all in your head’. I went to the psychologist – my husband was there – and she asked me my concerns. I just told her … she then asked, ‘How do they ask for things?’ I replied, ‘They just cry and I assume.’ She asked, ‘Do they connect with other people? When you tickle them do they smile?’; ‘Do they have different facial expressions?’ I said, ‘No, they just have one expression.’ I told her, ‘When they get angry, they hit themselves’.
“She said, ‘I think they have very strong signs of Autism Spectrum Disorder’.”
Autism is a spectrum disorder, which means that it appears in a range of forms and levels of severity. Some individuals develop typical capabilities in terms of speech and language – and develop exceptional skills – but struggle with lifelong social and behavioural differences. Others may have challenges in communication, sensory sensitivities, and behavioural issues, such as excessive tantrums, repetitive behaviours, aggression, and self-harm.
Source: Autism.org
The darkness seemed to overwhelm her. “I just broke down and cried,” she says. “My husband was like, why are you crying? And I said, ‘Do you know what she’s saying? She is saying they are special needs.’”
Diagnosis at three
In spite of the symptoms of autism, the doctors said a formal diagnosis could not be had until they turned three. “So at three years we went to Al Noor where we were told one is moderate to severe and the other is mild,” she says.
And so began the quest for teachers. “Autism is so expensive,” says Suhaib. “The doctors wanted me to get three types of therapies: occupational therapy, speech therapy and applied behavioural analysis - if it was just one child it would have been different but for two, it was getting impossible.”
But a newly opened centre (that has since closed) offered to teach one child for free. That meant Dh12,000 a month for the therapy for one child while the other’s was subsidised. Six months on, however, that discount was dismissed.
“So we left. I kept a therapist at home - this worked only for some time.” Finally, she enrolled them to a school-readiness centre called Widad. “That’s the place they are still going to; somehow, I am managing. The biggest problems I am still facing are: one is the financial strain and the second is, they are growing and their speech is still not that clear – there are a lot of behavioural challenges. Now they are growing up and they can’t express themselves and when they can’t express, it turns very physical.
“The most painful part in autism as a parent, for you to see your child is hitting himself and he’s bleeding and there’s nothing you can do."
Difficult days
The challenges come from various quarters. At home, for instance, it is difficult to retain a domestic. “My house help, most of them run away every few months, because it gets difficult for them to understand that this is how it works with them – if they are hitting [them or themselves], it’s not that they are angry, they might be hungry and are not able to express themselves, so they express themselves in this way.”
It’s also imperative to keep to a schedule; those with autistic traits are sticklers for routine. “Right now they have a routine – they go to school at 8am, they come back at 2.30pm, then I try to keep them busy; I work with them as well."
There’s also the fear of looming puberty. “Now they are getting bigger and stronger and I’m getting older and weaker. I’ve started doing gym as well because I want to build some muscle and get stronger so I can manage them physically as well,” she adds.
Suhaib says that one of the biggest hits to the family comes from without – from adults and kids who don’t know or want to deal with the twins. She recalls a particularly crushing episode. “Yesterday, I went to a park – one of my twins was sitting on a slide and he zoned out. A girl was like, ‘Move. Can you please move?’ I was a little away, I came running and said, ‘I’m sorry, he’s special needs, he doesn’t understand’. I pushed him down the slide. I heard the girl tell her friends – ‘Did you just hear that? She said he’s crazy – crazy kids are not supposed to come to the park and spoil our time’. I was so hurt, but I just got a hold of myself and after 10 minutes I went to the girl, said: ‘Can I talk to you? For your information, parks are for all kids; it’s just that he’s different. They have autism, so I’m sorry if you got troubled but don’t say these mean things to kids.”
It’s also difficult to explain the norms of socialisation. “I took them to a trampoline park. One of my twins wanted to play with a girl there, he just went and tried to hug her and that girl was so uncomfortable. The other one pinched her. Now it was such a difficult situation for me to tell her that he’s just trying to communicate with you and play with you; he doesn’t want to hurt you. Kids don’t understand,” she says.
And it’s not just the kids – it takes a toll on the parents’ social lives as well. Friends tend to whittle away when they see you struggle; sometimes it’s out of discomfort, other times, convenience. “They will not tell you why, but slowly your friends will try to not invite you because they think your kid is going to destroy their house,” she says.
And it pecks at the ties that bind a couple. “We can’t watch late-night movies, we can’t go out. Whenever we do go, we plan separately; okay, you go for this one, I’ll keep them, you go. Sometimes, I miss those times, you need space with your husband, a few hours of rest from the kids. We don’t get that.”
It is a relentless life, says Suhaib. “My father just passed away and I want to go home and spend time with my mum, but I have to think ten times, because they [the twins] will not let me sit at anyone’s place.”
The sunlight that chases the dark into shadows, she says is her third child, three-year-old Riad. “He gives me hope – when I’m down, he just comes over and says, ‘I love you’ and that’s everything,” she says, adding that it’s tough on the younger sibling too for when he tries to play with the twins, they may lash out at him.
“The saddest part is that it’s [autism] going to be there – you know when you have a disease you have hope – that you’ll treat it and get better or you’ll succumb to it, but with things like autism, it’s a life-long thing. You just have to manage,” she says.
Suhaib offers the following bits of wisdom hard-won from her own journey.
Breathe: When you get the diagnosis you are shaken so badly. For a good three months, I used to just lie on my bed and think my life is over. It took me three months to stand up again and say, ‘Okay, this has happened, now I need to move on’.
Accept it: Because if you are denying it, it’s not going to get you anywhere. The more you deny it or delay the therapy, the more you will miss that early intervention window for your child.
Don’t listen to others: If in the beginning you see your child has a problem, just go to the doctor, don’t listen to anyone. As a mother if you have a feeling that something is off about your child, there is. Get help.
Start your therapies as soon as possible: A child will learn more in the first five years than in the later five years, because the child is young, they are small, they are physically more compliant. When they are grown-up, it’s very difficult.
Explore: Read about it. Google is your best friend; read about the therapies, read about autism. When you go to a centre … you’ll have a general idea. When you go to a centre or doctor and you don’t know anything, they will treat you completely differently.
Life will go on: Life is not going to end. I’ve lost half of my hair because of the stress I’ve taken in the first two years. Then I realised, it’s not going to go anywhere. I have to fight it – I have to find ways to calm down.
Sit in on the therapy sessions: Question the teachers, they are taking so much money from you. Ask, because they are in therapy for an hour or two, but the rest of the day they are with you. So especially the mother – you will have to become the therapist of the child.
Suhaib also calls for understanding from parents of the neurotypical kids. “Please try to educate your kids – there is a whole world of kids out there who are different from you. They are special, God has made them as well, so if you meet one, don’t freak out, don’t hit or bully them. Because I have seen kids bullying them and laughing at them, and I don’t blame the kids… because I don’t recall my parents telling me about the special kids,” she says.
You may not be able to help the situation; but you can make it easier on someone else. Acceptance is key.
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