When Bianca Parzanezi Neves’ daughter Clara was born in 2013, it was love at first sight for the besotted new parents. "My pregnancy was perfect and Clara was born a super calm, beautiful and healthy baby,” says Bianca, a Brazilian stylist living in Dubai. “My husband, Marco, and I could not have dreamed of anything better.”
However, although they knew that their little girl was special, they began to become concerned when by 18 months she was not really answering to her name or giving them eye contact. “We spoke to her paediatric doctor, who could not see anything wrong, and her nursery also didn’t think she was different from any of the other kids.”
After hearing tests also turned out to be problem-free, the family had an assessment done by a neuro-paediatric doctor in Dubai, who diagnosed Clara as being on the autism spectrum.
“My world completely collapsed,” says Bianca. “I was scared, sad and lost. I had no idea what to expect or how to help my daughter. ‘What did I do wrong during my pregnancy?’ I asked myself.”
The importance of early diagnosis
While it’s natural for parents to feel upset when their child first gets an autism diagnosis, Clara’s parents had actually done the best they possibly could by their daughter in seeking an evaluation promptly, and persisting despite the initial assessments finding nothing out of the ordinary.
This is because research shows that the sooner a child can be diagnosed, the more effective their treatment options can be. The younger a child is, the greater their ‘neuroplasticity’ – meaning the brain’s ability to change, learn and retain new skills. So the earlier they are exposed to the right sort of therapies, the better chance there is that they will be effective.
While parents might prefer to put off investigating until their little one is older – or even be tempted to bury their heads in the sand until further investigation becomes unavoidable - studies show that early intervention can lead to an improved quality of life in the future, especially in terms of relationships with others and educational progress.
“Both research and clinical experience shows that there is an improved outcome when early intervention is applied at an early age,” says Dr. Bariah Dardari, HOD and Consultant Pediatrician, Fakeeh University Hospital. “Therefore there is a global initiative to emphasize the importance of early diagnosis and intervention in autism.”
What is autism?
Autism is on the rise, both in the UAE and globally. “Although we don’t have exact statistics in the Gulf area, we know from our clinical experience that autism is as prevalent in the UAE as other countries like the US and UK,” says Dr Dardari. “The latest statistics from CDC shows that the prevalence of autism in the US is 1 in 68 children.”
Autism is neurodevelopmental disorder, and it is a spectrum, which means it can manifest in many different ways, explains Nipa Bhuptani, director of the Applied & Behavioral Training Institute (abtinstitute.org) in Dubai and founder of the Autism Support Network. “Autism is not a linear disability across all domains. Although autism is described to have similar characteristics, each person with autism is very different from the other. These factors make autism difficult to understand and treat.”
What causes autism?
“Autism is a multifactorial condition, similar to diabetes or heart disease,” says Dr Dardari of Fakeeh University Hospital “A genetic predisposition may be present in some patients and then several environmental factors such as diet and chemical pollution, or maternal factors (such as hypothyroidism, low folic acid, and severe stress) can trigger a cascade of events involving the whole body, ultimately affecting the child’s brain.”
Could the pandemic and lockdown make a child autistic?
There has been a noticeable increase in the delay of speech development in children following lockdown, said Aalia Thobani, a Senior Speech-Language Pathologist and a Learning Development Specialist at The Developing Child Centre in Dubai during a webinar organized by Lego. “There has been significant increase in unproductive screen time,” she says, with her seeing some parents leaving children to watch TV for 8 hours or more a day.
Screen time does cause young children to begin avoiding interactions and become addicted to passive watching, warns the Autism Support Network’s Bhuptani. She advises parents who may have been over-reliant on passive screen time: "Reducing or removing screen time is a good first step at this point; but it is equally important to replace that time with opportunities to play, have fun, communicate and engage with others.”
How early can autism be detected in children?
“Paediatricians can detect signs and symptoms of Autism as early as six months of age, and advise parents on early intervention and monitoring of siblings at risk,” says Dr Dardari. “Parents also have a crucial role to play as the child’s advocate in obtaining appropriate therapy and education. The pediatric routine check-ups are an excellent opportunity to educate parents and increase the awareness of autism in the UAE.”
Autism is a multifactorial condition, similar to diabetes or heart disease
Autism ‘red flags’ emerge as early as 16-18 months, says Bhuptani, although the signs alone are not enough for a diagnosis. “Autism is not diagnosed by a test but by observation of the child's behaviours, thus it takes an experienced clinician or a multi-disciplinary team of clinicians to assess and diagnose.”
What are the first signs of autism in a baby or child?
The signs of autism in babies can be subtle, says Dr Dardari, “such as poor eye contact and lack of interest in interactive play, as well as poor sleep.” In toddlers, these signs become more obvious, “such as the child can have poor interest in toys, might have a repetitive play pattern, and has a lack of interest in social interaction with other children.” After two years old, it can manifest in the form of “delayed speech, repetitive ritualistic behaviour, regression in speech and irritability.”
While Clara’s parents were worried about her lack of eye contact, other indicators may be less obvious. Repetitive hand flapping, for example, can be an indicator – but on its own may not be point strongly to autism. Combined with other behaviours, however, it could become a red flag.
• No back-and-forth sharing of sounds, smiles or other facial expressions by nine months
• No babbling by 12 months
• No back-and-forth gestures such as pointing, showing, reaching or waving by 12 months
• No words by 16 months
• No meaningful, two-word phrases (not including imitating or repeating) by 24 months
• Any loss of speech, babbling or social skills at any age
How can autism be treated?
Autism can be treated with early intervention to address behaviour and speech with behavioural and speech therapies, occupational therapy, play therapy and social skills classes or exposure.
“An important new trend is to treat autism as a full body disorder rather than only focusing on treating the symptoms,” says Dr Dardari. “Most recent research studies are focused on methods of early detection, preventive factors during pregnancy, the connection between autism and food intolerance, and gastrointestinal disorders. Other therapies under research is the use of stem cell treatment for autism.”
For parents whose child has an autism diagnosis, the important thing is to focus on constructive ways to move forward and help your child, says Bianca.
“We realised that we had to educate ourselves in order to help our daughter. We decided to drop all our old expectations about her future – it was no longer a matter of whether she would go to the best university or whether she would be the smartest one in her classroom. We just wanted our princess to be happy and independent.”
Clara was two years and five months when she started ABA – Applied Behaviour Analysis – five hours a day at the Applied Behaviour Institute in Dubai, along with speech therapy and occupational therapy. “Every single achievement was celebrated and shared, and we were always looking for more ways in order to support our angel.”
The result of all this therapy and early intervention has been that Clara has been able to successfully integrate in a mainstream school, surrounded by neuro-typical peers.
While the pandemic has been hard on Clara and her family, it has been hard on all children and families, says Bianca. “I believe we are all so vulnerable to the changes in our routine and habits, but for an autistic kid it does have a huge impact. But we believe all kids are struggling with this COVID situation somehow. Clara is feeling the need to socialize and make new friends, which makes us very happy.”
What to do if you think your child may be autistic
If you have concerns that your child may be exhibiting signs of autism, discuss with your doctor and consider seeing a specialist. “Autism is treatable, especially if detected and intervened early on,” says Dr Dardari. “It is however a marathon, so parents with kids who have autism should set short and long-term goals, and also ensure their self-care and wellbeing in the process.”
For Bianca, raising Clara is a wonderful journey that is teaching her many lessons along the way. “I do not see myself as different from any other mother. We all have different challenges in our lives. Some might be harder than others but, at the end of the day, we all fight to get the best for our kids. With Clara I have learnt to see things from a different perspective. I worry less and enjoy life more. I’ve learnt that it does not matter how ‘perfect’ your kid is; having a neuro-typical kid does not give you a ‘headache-free ticket’. Nothing in life is perfect! And I’ve learnt how to live one day at a time.”