Understanding Autism Spectrum Disorder (ASD) and defining its varying levels have evolved over time. Now, doctors use three Levels to categorise where an individual falls if on the spectrum. Image Credit: Shutterstock

Dubai: Living with autism spectrum disorder (ASD), no matter where you fall on the spectrum, gets that much harder if you don’t know what’s going on. Whether one falls on the ‘high-functioning’ level or the non-verbal non-responsive level of the spectrum, diagnosis is the first step to feeling like you belong – that you are not alone, as these Dubai residents can attest.

I have always felt different, I have always wondered why I felt out-of-place, like I didn’t belong.

- Cosmina, Dubai expat with ASD

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Dubai resident, Cosmina Condrat (40), never understood why she felt so different. The Romanian expat was unabashed about ‘being herself’ and was not aware of how that would affect others. And, she had always been that way, Cosmina asserted.

Two years ago, however, she understood why she felt this way, or why people would take offense to something she had said with no intention to offend.

What is ASD?
Autism spectrum disorder (ASD) is a developmental disability caused by differences in the brain. Some people with ASD have a known difference, such as a genetic condition. Other causes are not yet known.

- US Center for Disease Control and Prevention (CDC)

Seeking help

Diagnosis also means – to these residents and other autistic adults we spoke to – a chance to understand why neurotypical individuals behave in certain ways. It also means finding ways to address challenges, and charting a successful life and career trajectory.

Cosmina’s husband was the one who urged her to seek help so she would be able to understand her loneliness, especially in social situations. Never the one to ‘spend rashly’, Cosmina found an online mental health service. When her first therapist turned out to be a failed attempt – ‘She was like a brick wall to talk to’ – Cosmina put in a request to find another specialist.

Her second therapist, a Spanish-speaker like herself, was like ‘a friend’ to Cosmina, However, ever the skeptic, she started questioning why she could not do this with any other friend, and for free. What tipped the scales, Cosmina explained, was a 10-minute conversation when her therapist asked her some questions and told her – ‘I think you have Asperger’s syndrome.’

20240201 greta
Swedish environmental activist Greta Thunberg is a popular figure with ASD. A book written by her mother Malena Emman - a famous Swedish opera singer - describes how she went through a spout of depression followed by a diagnosis of Asperger's syndrome.

“I was like what is this, I had no clue,” Cosmina said.

99% match

A developmental disorder that is part of ASD, Asperger’s Syndrome – which is now called Autism Level 1 – makes it hard for individuals to relate to others in social situations. Considered a ‘high-functioning’ diagnosis on the autism spectrum, individuals have symptoms such as trouble making eye contact, missing social cues and body language, or they could come across as unemotional.

Armed with her diagnosis, Cosmina researched the condition extensively and found that she was a 99 per cent match for all the symptoms described.

It [the diagnosis] helps me in the sense that it reinforces that some things are not my fault… It is also frustrating at times, knowing that I cannot fix certain things.

- Heidi, Dubai expat with ASD

For Heidi Frost (41) from the US, her daughter’s autism diagnosis was what triggered her self-diagnosis as being on the spectrum. Heidi commented that resources for research and understanding of ASD was limited in the 90s when she first went about trying to understand the disorder.

Dr Binu George, HOD, Child Development Department at NMC Royal Hospital, Khalifa City, Abu Dhabi commented, “For someone who was diagnosed late in in life or as an adult, one assumes that they have been navigating the demands of life and have managed to attain a certain level of function in society. They may be having problems with relationships both at home and work or may also be struggling with dealing with social and sensory situations at both.”

“Educating spouses and children about ASD in general but also the specific way it impacts this person is the first step. Access to specialist services that train these family members to not only be able to support the individual but also deal with their own emotions and feelings is very important. This is key as these family members may also be struggling due to the pressures put on them by this relationship.”

Tesla, X (formerly known as Twitter) and SpaceX's CEO Elon Musk speaks with other delegates on Day 1 of the AI Safety Summit at Bletchley Park in Bletchley, Britain on November 1, 2023. The UK Government are hosting the AI Safety Summit bringing together international governments, leading AI companies, civil society groups and experts in research to consider the risks of AI, especially at the frontier of development, and discuss how they can be mitigated through internationally coordinated action.     Leon Neal/Pool via REUTERS
In 2021, when he hosted “Saturday Night Live”, billionaire and tech extraordinaire Elon Musk casually admitted: “I’m actually making history now, as the first person with Asperger’s to host SNL… or at least the first to admit it.”

Feeling ‘less alone’

Aidana (22), a Dubai resident and a final year engineering student, had several symptoms of being on the spectrum such as sensory issues with food, clothes and noise and misunderstanding social cues. Her friends motivated her to research about autism.

The Kazakhstan native moved to Dubai for her studies as she wanted to do her degree abroad and her parents preferred Dubai since it is known to be a very safe city.

For her autistic daughter, Dubai expat Heidi - who is also on the spectrum - struggles with expectations other adults have about how her daughter ‘should’ respond in social situations.

“At first, when a lot of my friends said I showed signs of autism, I didn’t believe them. Then I did a lot of research – reading different books, attending university lectures, and talking to healthcare professionals,” Aidana said.

She attended her first ASD support group in Dubai soon after without any specific expectations or hopes. But there, she found a tribe of people who made her feel ‘less alone’.

How has diagnosis helped these expats?

Woman looking at laptop from
Therapist Anna White said inclusive workspaces and hiring initiatives, community help groups, assistive technologies and online platforms would make it that much easier for individuals with ASD to thrive and contribute to society while overcoming conventional challenges.

Cosmina said, “To me, the way I behave is normal. But I never understood why people would be shocked at something I say. To them it is out of place or too direct… So, now I tell everyone – if you feel I am direct or awkward, or if I don’t reach out, if I don’t understand what you said it’s because my brain is wired differently.”

Cosmina added that the clarity in why she would behave in certain ways also helped her want to put in more of an effort in understanding that her words or actions could be misinterpreted.

Anthony Hopkins
Celebrated actor Sir Anthony Hopkins was diagnosed with Asperger's Syndrome in his 70s, he revealed in 2017. He called it a "a great gift."

“I try to make an effort, to be more in touch with people, and I tell people – if you don’t like something I said or did, you must tell me, because I won’t know.”

Heidi said, “It [the diagnosis] helps me in the sense that it reinforces that some things are not my fault… It is also frustrating at times, knowing that I cannot fix certain things.”

Now, as a mother to an autistic child, the diagnosis helps Heidi navigate parenting too. “It is a net-positive for me,” Heidi laughed.

As for her daughter, she said the main difficulty was dealing with expectations from other adults about how her daughter ‘should’ respond in social situations.

More boys are diagnosed with ASD than girls, reportedly because girls tend to mask symptoms more effectively than boys.

Talking about how the self-awareness helped, Aidana said, “First of all, it helped me understand how to accommodate my needs, understanding that I need do somethings differently other than others. And talking with autistic people make me feel that this is something others struggle with too.”

Her ASD group is where Aidana looks for advice and perspective when it comes to navigating day-to-day situations.

Dr Binu added, “Unrecognised or undiagnosed spectrum disorders can leave an individual with significant disadvantages in career and family life.

“Poor understanding of the condition by family and peers may lead to misinterpretation of skills and abilities and hence will definitely impede achievements in both the work and home spheres.”

ASD levels
According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), doctors categorise autism by assigning levels 1, 2, or 3 to two areas of functioning: social communication and restricted, repetitive behaviors. Level 1 is the lowest and most manageable one, most often called the 'high-functioning' end of the spectrum.

Living with autism in the UAE

Anna White, Senior Occupational Therapist and the Director of Mental Health First Aid UAE at The Lighthouse Arabia, said, “One of the key aspects to understand is that individuals on the spectrum possess a wide range of abilities, interests, and challenges. The common thread that unites them is the need for acceptance and accommodation in a society that often demands conformity.”

“In Dubai, a city known for its rapid development and multicultural environment, adults with ASD encounter both opportunities and challenges.”

Heidi told Gulf News, for instance, that she is wary about who she would reveal her ASD diganosis to. She said that it could automatically change perceptions and the safety that she feels in certain social situations.

Aidana, who will soon graduate and look for a job felt that revealing that she is autistic could lead to bias.

Could too much TV cause a baby to develop autism?
Dr Binu said, “Studies have shown us that interventions ideally started before the age of 4 tend to produce more significant results."

“Sometimes people don’t understand what you go through, like my sensory issues, for example. Even if they know about them, some people may not respect these issues.”

From her experience in therapy and helping people on the spectrum in UAE, Anna said, ”Dubai's multicultural landscape fosters an environment where neurodiversity is increasingly recognized and embraced.”

She added that inclusive workspaces and hiring initiatives, community help groups, assistive technologies and online platforms would make it that much easier for individuals with ASD to thrive and contribute to society while overcoming conventional challenges.

Adult diagnosis vs early diagnosis

Cosmina got her diagnosis in her late thirties, after becoming a mother and having started a job. However, for some people, an early autism diagnosis can mean a significant impact on quality of life.

Diagnosis of autism before the age of four, if not earlier, is critical for effective management of the disorder.

UAE expat Heidi’s daughter was diagnosed before she turned 2 as she had classic signs such as sensory issues and inability to focus. The early diagnosis helps, experts told Gulf News.

Dr Binu said, “Studies have shown us that interventions ideally started before the age of 4 tend to produce more significant results.

“This does depend on the extent or severity of the issue. In my experience one would get more ‘change’ if interventions are started before the age of 4 years rather than later.”

Dr Mohammed Yousef, Specialist Psychiatrist, Aster Clinic, Al Muteena, Deira added, “Symptoms include no emotional response, avoiding eye contact, no smiling and/or repetitive movements.”

“Whenever in doubt consult a psychiatrist and confirm the diagnosis. This will help in early detection and management.”