Gulf News explores the reality of living with autism

Gulf News

Autism Spectrum Disorder (ASD), referred to as autism, is a condition that affects social interaction, communication, interests  and behaviour. While this is generally known, what is little focused on is the day-to-day challenges of living with autism, not just for  the person affected by it but also by the caregivers or families involved. One thing that is little highlighted is the derisory attitude  of mainstream society when confronted with individuals with autism. See more at: http://gulfnews.com/gntv

Transcript

00:00The first thing that was difficult for me was that I couldn't, that I had a problem

00:08with my speech. It was a delayed speech and I was not able to talk at a young age.

00:16Did you get teased at all at school?

00:19Teased, bullied, I guess so.

00:21Yeah, why? Because you were different?

00:25Mostly, I speak differently, act differently, I had strange mannerisms, tics, physical and

00:32verbal.

00:33One time, one kid beat me up on the bus one time for just sitting down on the next seat

00:41and I don't know why that is.

00:44There has been a global rise in the diagnosis of autism and Dubai has not escaped this epidemic.

00:50But what do we really know about autism?

00:52Autism is a range of difficulty and so we have children who perhaps can't communicate

00:58verbally at all and we have other youngsters who have very good vocabulary so they know

01:05the names of every star in the galaxy but they can't use that as functional language

01:11to communicate at an emotional level.

01:14So when we talk about communication deficits, typically a child with autism does not really

01:19want to interact with another person.

01:21They are quite happy being by themselves and they are often described as being in a world

01:26of their own.

01:27So they will ask questions and answer questions but they won't have a discussion about perhaps

01:34what you did today or you will say, oh, something's really upsetting me.

01:39They wouldn't say, what is that?

01:41There's a whole spectrum of behaviours that comes under this particular disorder and that's

01:47why it's referred to as a spectrum.

01:49It's a very difficult time for parents when they realise that their child has special

01:52needs.

01:53I still remember that day, it was in India, we went to, we took Calvin for the speech

01:59and hearing problem because we felt he was, he had some problem with the hearing.

02:05So we took him to the doctor, then he said there is nothing wrong with the ear, he's

02:08perfectly alright but he said go and see a special educator.

02:13So when we went there, they did the test, what is possible, what has to be done.

02:20So after the test they called me inside and said this is your son's case and I think that

02:25was the first time I cried very loudly, I mean I couldn't take it.

02:32It was a shock, you know, that time.

02:34He just told me he has autism directly, you know, directly.

02:39So autism and, you know, however I was in the medical field but I didn't know what's

02:45exactly autism.

02:46It was just like a word in a book I read a long time ago and I didn't realise what is

02:51autism.

02:52I took the word and I went home and surfed the internet and it was a very bad day.

02:58So it was a very, very difficult time for the whole family, not only me, we all were

03:03grieving for the child that we had and we lost.

03:09But imagine how much more difficult their life becomes when society's reaction to them

03:13and their loved ones is unwelcoming and unpleasant.

03:16It used to hurt much before when my son was small because when we are very good friends,

03:21college friends, when we are especially neighbours in the building, we'll find children playing

03:25and my son wants to go out and play with them, immediately they'll call the children back.

03:30But my son just makes some noise, they will make him stop playing other than, especially

03:35my daughter had a lot of problem because she lost friends because those parents will

03:40not allow their children to play with my daughter.

03:43When we ask them why, because your son has a problem.

03:46Even my classmates, some of them, they know that I have a special brother, they just kind

03:50of stay away from me, as if, you know, I'm also kind of different.

03:56It's really sad because till now, you know, people are dealing with those kids as if they

04:00are naughty kids.

04:02Well, Ahmed is not naughty, he is special.

04:05You know, Ahmed is doing these things out of, you know, he's not controlling these things.

04:11There are two people that really are so scared for my brother, I don't know really why.

04:17So, I'm like, and they're a bit mean to him, so I'm like, ignore, I'm not going to be their

04:26friends and, yeah.

04:28There is a lot of, still a lot of taboo with people with special needs.

04:35There's not enough awareness.

04:37Children just come and they stare at her like she's in the zoo or something.

04:43Most centres that care for children with autism are operating at full capacity and often with

04:48long waiting lists.

04:49But what happens to these children when they turn 18 and come out of the education system?

04:54So, this is the biggest issue we are facing, biggest worry for us.

04:59Every day we think what is going to happen because in August he turns 18.

05:02We have like, once the boys turn 18, the visa question comes, the visa, the air ticket.

05:09Sometimes the company provides, but again, after 18, the boys, all these things stop.

05:13The medical stops, the air ticket stops, all these things stop for them.

05:17There is no specialised centres, there is no rehabilitation centres for kids after 18,

05:21so where to go, you know?

05:22This is the question that everybody now is asking, the parents, the society, and even

05:28us, because after 18 we can't give them any services.

05:34And afterwards, it should be the country's responsibility.

05:38I don't know if it's something that the government should have responsibility for.

05:43I think the government should facilitate in any way, and they do.

05:47For example, the Dubai government has a programme for adults with special needs where they receive

05:56all kinds of perks, everything from RTA passes to what have you.

06:04So I think any way that the government can streamline it is fantastic.

06:09People with autism, especially those on the high end of the spectrum, are able to learn

06:13skills that can be applied in the workforce and are hoping to find their place in society.

06:18And I've completed grade 10, so I'm applying for grade 12, higher secondary exams, which

06:24is senior secondary, and after that I plan to go for further studies, plan to study further

06:33in university.

06:34I've always been interested in mathematics and physics, so that's what I've been planning

06:41to do, go abroad, go to my degrees and eventually research after I go to the master's doctorate.

06:49I want to be a jewellery designer, I design jewellery, and if I feel very independent

06:55if I keep doing that, I will do my best and not give up or anything.

07:01I want to make my parents proud and everyone else too.

07:04According to 2014 CDC statistics, 1 in 68 children are diagnosed with autism each year.

07:11With that number expected to rise, the message is clear.

07:14We must take steps to ensure the future for these children is secure in our world.

07:19I'm Salvi Girampaya, Golf News.

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