As the community prepares to mark Autism Awareness Month, we look at why integration of people with autism is vital
When educational programme Sesame Street announced its first character with autism recently, it marked a significant step for those affected by the disability.
And with World Autism Month being held in April, and World Autism Day on the 2nd, it couldn’t have come at a better time.
Locally, experts, parents, volunteers and educational staff continue to work to create greater awareness in the community. And as NYUAD prepares to host a series of awareness events, we look at why the inclusion of people with autism is so important.
Spectrum of colour
The World Health Organization estimates that one in 160 children globally have an Autism Spectrum Disorder.
Nipa Bhuptani, a behavioural analyst and autism consultant who founded the Autism Support Network, explains, “Autism is a neuro-developmental disability, which usually surfaces around the age of two.
“Autism is treatable but not curable, so it’s a lifetime disability that will not go away.
“A person with autism can have difficulty with social interaction. Some might not be able to speak; some are vocal but still not able to communicate effectively.
“They have difficulty in understanding non-verbal communications such as gestures that are generally used by people in communication.
“They’ll have stereotypical repetitive behaviours. They have a difficult time trying to manage change and understand new routines.
“They may have sensory difficulty and be hyper- or hypo-sensitive to their environment.”
While the cause of autism is still unknown, it’s thought that both genetics and an environmental trigger contribute.
Over the years, the number of diagnoses has increased, however Nipa explains this is partly because the diagnosis has broadened, meaning more disorders fall under the autism umbrella, while an increased awareness means more people are seeking services earlier.
Needless to say, the introduction of Julia to Sesame Street will further increase this awareness while also hopefully breaking the stigma.
“This will have a huge impact… There’s a large number of children around the world that are enamoured by that programme,” Nipa says.
“People in homes in everyday life will know what autism is and I think that’s huge.”
But awareness isn’t always enough. Families and people with autism in Abu Dhabi face many challenges, particularly when it comes to inclusion.
“Usually when a child with autism has difficulty in school, there isn’t enough support. Although legislation now [states] schools cannot refuse children on the basis of the fact that the child has autism, there isn’t any accountability; they might refuse the child just by saying they don’t have space.
“I’ve been working with a family with a three-year-old and they’ve applied for 14 schools in Abu Dhabi and received ten rejections already. Even when parents are willing to send their children to specialised centres, there’s not enough availability.
“The other challenge is inclusion, the understanding of the difficulties that a person with autism has,” Nipa continues. “Culturally, everybody is expected to behave in a certain way and the moment you fall out of that specific behaviour you’re kind of rejected from society.”
Aside from children, adults also face challenges. While centres such as the Emirates Autism Center and New England Center for Children offer valuable support for youngsters, Nipa says there is a significant shortage of vocational centres and even social clubs catering to adults with autism.
“I work with a family whose son is turning 18. As per the law here, boys who turn 18 can no longer be on their parents’ visa. So where is this boy going to go? The father has to leave his job and go back to their home country because they cannot renew his visa anymore.”
As part of efforts to make everyone in the community more aware, Nipa hopes to train more educators to look out for common symptoms and offer support to parents.
But even those who just have an interest in learning more about autism are encouraged to take part in community events.
As part of April awareness events, NYUAD is hosting an autism documentary screening on 18th April, its third annual Autism Education Conference on 29th April and will turn blue for the global Light It Up Blue campaign. To find out more, visit: nyuad.nyu.edu
Are you worried that your child may have autism? Nipa suggests observing children’s development, taking notes and seeking a diagnostician’s services if concerned.
“The first thing you want to look for is whether there are delayed milestones. That’s where you start observing more closely and seeing how much that delay is and in which areas.”
Even babies will track adults with their eyes. If they’ve got a toy in their hand, they’re going to play with the toy then look at the adult to see if they’re looking at their toy. That joint attention, even before they’re talking, needs to be observed.
Play skills: Are they playing appropriately with toys? Do they have imaginary play skills? Can they make an aeroplane out of a spoon?
Sharing joy: When they’re engaging socially and someone is praising them, do they acknowledge the other person and engage with them?
Pointing: When an adult points at something, will they look in that direction?
Spoken language: Are they babbling, speaking words in context, making a request that’s appropriate and using appropriate ways to request?
Living with autism
When Laura Dietz moved to Abu Dhabi, her first child, Lily, was just 13 months old. At the time, Lily had been on target with her zero-12 month milestones, and was only slightly delayed in gross motor skills.
When Lily reached 18 months and wasn’t walking or talking, Laura and her husband became increasingly concerned, but were told by a paediatrician that every child grows at their own rate.
By the time Lily was 21 months, she was referred to a neuro-development consultant who observed Lily for several hours before diagnosing her as a high risk of autism spectrum disorder.
It was a difficult time but since Lily’s diagnosis, her parents have worked hard to research the disability, provide Lily with the support and therapy services she needs and have even integrated the four-year-old into mainstream education. But it hasn’t been without challenges.
“Unlike some other disabilities, sometimes you would know about this as a parent from the day your child is born, but this is a journey,” Laura explains. “It took us two years to realise Lily has a specific set of challenges, and since then I’d say it’s taken us another 18 months to really understand when we talk about autism, what that means for Lily.”
Another challenge is that the financial burden for people with autism falls on the family as therapy services aren’t covered by insurance here. Laura and her family have taken great effort to find a balance for Lily in terms of education, therapy and after-school activities.
Laura is also quick to point out the support the UAE offers to families of children with special needs: “We are uniquely fortunate to be based in the UAE. I think the diversity of people, cultures, religions and backgrounds makes the average person here more open and
accepting of differences.
“The UAE is always doing things for children with additional needs, so I think the attitude of support is there but possibly the implementation is not,” she continues.
“There’s certainly not enough access to quality therapy and support.
“From an educational perspective and in terms of after-school activities and resources, there needs to be more because the ultimate goal for people with autism is to have them integrate as much as possible into normal peer groups, and that’s actually hard, particularly given the challenges parents face getting their children into schools.”
Speaking to other families who may be going through a similar experience, Laura says, “You have to stay focused, keep going after resources and asking questions for your child until you feel comfortable with the support you’re getting.
“When I see people struggling is when autism becomes everything about who they
are, and it’s difficult not to let that happen.
“It’s about appreciating the unique things your child can bring to your family and the world, providing them with the best infrastructure possible to achieve their potential and having the flexibility to say ‘it’s a journey’.”
To read Lily’s full story, click here.
• Autism Support Network facebook.com/autismsupportabudhabi
• Goals UAE facebook.com/goalsuae
• Nipa Bhuptani nipabhuptani.com
• The New England Center for Children neccabudhabi.org
• Emirates Autism Center emiratesautism.ae