With April being observed as Autism Awareness Month, a researcher from the Qatar Biomedical Research Institute (QBRI) at Hamad Bin Khalifa University (HBKU) has highlighted some of the long-standing misconceptions about autism and the need to diagnose it at the earliest.
“Viewed for decades as primarily a childhood condition and something to be addressed in the early years, it was widely thought autism might eventually be outgrown,” Dr Maha al-Thani, a research fellow at the QBRI, noted in an article published by the HBKU. “This misconception created a ‘lost generation’ of autistic adults who have navigated life without understanding themselves, without access to appropriate support, and often carrying the weight of wondering why everything feels harder for them than for others.”
She cited a review from King’s College London highlighted some statistics noting that an estimated 89-97% of autistic adults aged 40 and older in the United Kingdom remain undiagnosed.
“These individuals grew up at a time when autism was primarily associated with young boys who had obvious support needs,” Dr Maha said. “The broader, subtler presentations we now recognise, particularly in women and girls and those who learned to mask their differences, were almost entirely missed.”
She highlights that this under-diagnosis represents decades of people navigating education, employment, and healthcare without a framework for understanding their own minds.
The consequences ripple through every aspect of life, from mental health to physical well-being.
She has also quoted a study in the Journal of Autism and Developmental Disorders which found that the age at which an autistic person receives their diagnosis plays a more critical role in quality of life than their chronological age.
Those diagnosed later report poorer social lives, not because they are “more autistic”, but because they spent decades without understanding or accommodating their own needs.
The writer underlined that subtler presentations, especially in women, girls, and those who learned to “mask” their traits, were often overlooked and it has left many individuals without a framework to understand themselves, leading to widespread impacts on mental and physical health.
“The cumulative toll of decades of masking can contribute to mental health difficulties,” Dr Maha said.
“Social isolation becomes a significant concern, as carefully maintained connections are disrupted by retirement or bereavement,” she continued. “The most alarming findings suggest autistic adults may be at higher risk for early-onset of dementia, underscoring the urgent need for better understanding and support for this population.”
The many faces of autism reflect the truth that autistic people are as diverse as any other population.
“For the ‘lost generation’ of undiagnosed adults, the journey to discovery may come late, but it is never too late for self-understanding to improve quality of life,” Dr Maha said. “For younger generations, we have an opportunity to do better, to recognise autism early and provide support without stigma.”
“We must adopt a lifespan approach that funds long-term research, integrates tailored healthcare, and expands social support so that autistic people at every age can live happy and healthy lives,” she added. “The most important support any of us can offer, regardless of age, is acceptance: the simple, profound gift of allowing autistic people to be authentically themselves.”