April is World Autism Month, a time when iconic landmarks and buildings around the world are lit in blue to raise awareness and acceptance of the neurobiological disorder that affects communication, behavior and social relationships.
After an autism diagnosis in a child, families can face an overwhelming and confusing road ahead: while still coming to terms with their child’s condition, they must start considering early intervention, navigate therapy and schooling and find practical strategies to help their offspring — often while helping other family members and siblings to adjust to a new way of life.
Many parents aren’t given any guidance on what to do next and moving on from diagnosis can seem daunting. But there are groups of parents across the UAE who are ready to point out the best options, and to offer advice and support.
Dealing with an autism diagnosis
“First and most importantly: remember, this is not your fault,” stresses Andrea Allen, a 45-year-old British expatriate living in Dubai who has a 12-year-old son, Oscar, with autism. “Remember — you didn’t do anything wrong. When you attend assessments, they ask about your pregnancy and birth, your mental state in the first year — et cetera, et cetera. Therefore, it can be so easy to interpret this as blame on your part, but this is not the case at all.
“Your child is his or her own version of perfect; guilt and blame don’t belong here.”
Give yourself time
The National Autistic Society says the most common reactions reported by parents include devastation, helplessness, surprise and relief — at finally finding an explanation for their children’s behavior.
Allen always urges parents to take a moment to grieve. “Be kind to yourself,” she says. “Acceptance comes in stages much like grief, during this time, be kind to yourself and accept that you are allowed to grieve for the things you may never experience with your child or the experiences your child may never be able to experience.”
Join an autism support group in the UAE
Across the UAE, there is an abundance of support groups for parents with autism that can serve as a network, vital resource and source of advice for those in the same boat. A support group can provide encouragement, information and inspiration for parents as well as siblings, grandparents and others who are close to the family.
April McCabe is an American expat who has lived in UAE for 11 years. She runs the Autism Mom Dubai support group.
“I encourage parents to reach out to other parents for support and help guide them of where to go,” she says.
McCabe, who moved to Dubai in 2008, also founded Autism Support Dubai, Peer Power and Autism Airspace. The various members share the good, the bad and the never talked about — along with all the valuable knowledge amassed over the years. She says parents unsure of what to do first can turn to many others for answers to questions ranging from the best medical support to schooling options. They can also simply offer a sympathetic ear.
Allen agrees, saying: “Reach out and connect with others in your community because we know what you are going through and we will not only understand better than anyone else, but we will also have the best contacts, recommendations for care, et cetera, as we have a wealth of expertise between us.”
Other support groups include Autism Support Network UAE, which consists of parents, therapists and educators who meet monthly in Abu Dhabi to share tips and support based on experience and qualifications, and Goals UAE – a community-based, volunteer initiative with the aim of providing extra-curricular activities and after-school programs to children with autism in Abu Dhabi and the wider UAE.
Joining a support group can be an important initial step for parents who don’t know what to do, says Zora M’salka, a 35-year-old Canadian living in Dubai. Her six-year-old twins Make and Mow have autism.
“Get in touch with autism support groups, there are many and you can ask other moms whatever you need to know,” she says.
Get informed about autism
“Autism doesn’t come with a guide — each case is different — but what I always say to new moms is get to work,” says M’salka. “It’s such a tough time for any parent in those first few months and there is a lot to process.”
But it’s important for parents to start gathering as much knowledge as possible about autism spectrum disorder so they are equipped to make important decisions.
“Don’t waste time, start early intervention and therapy straight away and educate yourself, because no one will know your child better than you do,” she says. “So you need to learn so much in so little time, because you need to follow your child’s program as well.”
Explore autism early intervention
Parents will understandably want to learn as much as possible so they can choose the appropriate therapies and interventions to help their child. There are many places for them to turn to in the UAE, both on and offline. Autism advocacy groups such as Autism Speaks offer a helpful snapshot of the the disorder, while the UAE now has a growing number of autism specialists and centers, such as the Dubai Autism Center, American Center Psychiatry & Neurology, King’s College Hospital Dubai and the German Neuroscience Center (GNC) in Dubai, where pediatricians and therapists provide a full range of diagnostic services, in-depth assessments and ongoing support for children and their families.
As each child or adult with autism is unique, autism intervention plans should be tailored to address specific needs, says Dr Willem Van der Kamp, a neurologist and neurophysiologist at GNC.
Early interventions seek to minimise or mitigate autism-related delays to development
Intervention can involve behavioural treatments, medicines or both. Many children with autism have additional medical conditions such as sleep disturbance, seizures and gastrointestinal distress.
Addressing these conditions can improve attention, learning and related behaviors, says Dr Van der Kamp.
While treatment and early intervention is important, experts say the most important therapy usually takes place in the home, where parents are encouraged to learn as much as they can about interventions.
According to the National Autistic Society, when parents learn their child is on the autism spectrum, they can begin to better understand their needs, arrange the right support and help them to maximize their potential.
Give siblings of autistic children support
The National Autistic Society also stresses that siblings might feel that an autistic child takes a lot of time and attention away from them. They advise parents to help siblings better understand their brother or sister’s needs, make time for them and arrange separate activities — basically helping them to live their life as fully as possible. Older children may have good ideas about how best to manage situations with their autistic siblings, and can be a good resource.
Find a school for your autistic child
According to the Centers for Disease Control and Prevention (CDC) in the US, most children with autism are diagnosed after age four, though autism can be reliably diagnosed as early as age two.
Experts say it is never too early to start researching schooling options for your child as children who receive autism-appropriate education and support at key developmental stages are more likely to gain essential social skills and react better in society.
While finding schools for autistic children in the UAE has long been a major battle for parents, not to mention extracurricular activities, the situation does seem to be changing. New rules launched by Dubai’s education regulator require that all private schools in Dubai be able to cater for special needs children — including those with autism — by 2020.
There are also dedicated educational facilities to help children across the spectrum. Rana Akkad Atassi launched the UAE-based special needs center Jad’s Inclusion, named after her autistic son, to help fill the gap between mainstream and special needs education in the emirates.
Parents of a child with autism need to pace themselves for the long-term, say experts, as many early intervention therapies take time before results are seen. Autism advocacy groups such as Autism Speaks advise parents to take time for themselves, for their own good and for the good of their child.
That means maintaining friendships, hobbies, interests and relationships. Where necessary and possible, use respite, babysitting and extended family to get time to yourselves and enjoy life.
Stay positive and be proud
Above all, moms across the UAE say it is important to remain positive.
As M’salka says: “My two boys are the kindest, most honest, most hard-working children — and really smart. I am so proud of them. They work hard but just learn a little differently to others. I am definitely a better person because of them.”
According to Autism Speaks, an autism advocacy group:
• Autism spectrum disorder rates have skyrocketed in recent decades, estimated to be one in 59 children in the US and one in 160 globally, according to the World Health Organization. That’s well up from about four in 10,000 in the 1960s.
• Boys are four times more likely to be diagnosed with autism than girls.
• Although autism can be reliably diagnosed as early as two, most children are still being diagnosed after age four.
• An estimated one-third of people with autism are nonverbal, while 31 of children with the disorder have an intellectual disability with significant challenges in daily function.
• Early intervention affords the best opportunity to support healthy development and deliver benefits across the lifespan and can improve learning, communication and social skills, as well as underlying brain development.
Featured photo: Unsplash