Why Does Autism, Especially In Women, Often Go Undiagnosed Until Adulthood?
Females on the autism spectrum appear more likely to “mask" their autistic traits
By Michelle Lee SM -
Sensory issues, challenges with communicating needs, repetitive speech or body movements, and disproportionately large responses to noises — these are some of the signs of autism in children. But in many cases, symptoms can be missed, and it is increasingly recognised that many individuals with Autism Spectrum Disorder (ASD), a complex neurodevelopmental disorder, remain undiagnosed until adulthood.
This delayed diagnosis poses significant challenges for individuals, as they may have missed out on early interventions and support. According to Autism Resource Centre (Singapore) or ARC(S), there is currently no documented cure for autism. However, individuals on the spectrum respond well to structured early intervention, education, and vocational placements that focus on the learning style of students with autism.
While there haven't been any formal studies conducted on the prevalence of autism in Singapore, the Institute of Mental Health (IMH) estimates that there are about one in 100 individuals who are diagnosed with autism in adulthood, Dr Sim Zi Lin, a psychologist at ARC(S) tells us.
She shares more about why some adults might not realise they might have autism, why many women get diagnosed only later in life, and everyday coping strategies for autistic individuals with lower support needs.
Dr Sim Zi Lin (SZL): In the past, awareness of autism was much lower than what it is today. As such, parents may not pick up on the fact that their child might be on the autism spectrum, especially if the behavioural features are not so apparent, and thus they may have never been referred for an autism assessment in childhood or adulthood.
For adults with possible autism who do not have a learning disability, these are some potential signs:
Difficulties understanding what others are thinking or feeling
Taking things very literally, e.g., challenges understanding sarcasm or phrases like “catch no ball” or “spoil market” (in the Singapore context)
Finding it hard to express how you feel
Experiencing high levels of anxiety when your routines are changed
Problems with initiating or sustaining social relationships
Difficulties with obtaining or sustaining employment or education
Is it true that many women get diagnosed only later in life and why so? Is ASD in women different?
SZL: Females are frequently diagnosed later than their male peers, and the risk of going undiagnosed is higher for women on the autism spectrum.
There are several factors for this phenomenon:
Commonly used diagnostic tools for autism were largely standardised (“normed”) on male samples.
Females on the autism spectrum appear to have fewer social difficulties than their male counterparts, possibly because they are more likely to “mask” or camouflage their autistic traits, even if the stress of doing so can overwhelm them.
The high-intensity interest areas, which are characteristics of autism, of females on the autism spectrum also tend to show up as more similar to neurotypical females, such as reading books or chasing celebrity news, and may thus go unnoticed.
SZL: Often referred to as "high functioning autism", the term used today in the autism community is "person on the autism spectrum with lower support needs" or "autistic individual with lower support needs".
In terms of seeking help, the appropriate avenues would depend on the challenges that the adult is facing. In Singapore, adults on the autism spectrum with co-occurring mental health conditions may consider seeking help at the Adult Neurodevelopmental Service (ANDS) at the Institute of Mental Health (IMH).
The social service agencies within the Autism Network Singapore, which are ARC(S), AA(S), AAWA, Rainbow Centre, and St. Andrew’s Autism Centre, would be good starting points to seek further support in the areas of employment services, residential services, or social and leisure opportunities.
What are some coping strategies these individuals can adopt to help in their everyday lives?
SZL: Recent research that explored the direct experience of adults on the autism spectrum with regard to their resilience and coping strategies identified some helpful areas:
Setting reasonable expectations and goals for themselves
Learning to identify their own unique strengths and challenges
Taking time to engage in recreation and leisure pursuits e.g. incorporating breaks into daily schedules and exploring their areas of interest
Seeking emotional support and a sense of belonging, such as through joining a support group or a community of other adults on the autism spectrum
Adopting technology to support different aspects of daily life, such as grocery shopping or social interaction
SZL: Below is paraphrased advice that was given by our colleague from Autism Resource Centre (Singapore) who is on the autism spectrum:
It is important for loved ones to acknowledge that adults on the spectrum have their own dreams and aspirations for the future, and like everyone else, they should have the opportunity to pursue them.
It would also help if loved ones recognise that they too are adults, and therefore support them in gaining independence and empowering them to make their own decisions.
Just as how we would connect with neurotypicals, connecting to those on the autism spectrum is not that different – closely listen to the voice of the person on the autism spectrum in whichever communication style works for them, and always remember to seek first to understand their perspective.
For more information, visit the Autism Resource Centre (Singapore)'s website.