Dr Meng-Chuan Lai, Clinician Scientist at the Centre for Addiction and Mental Health and University of Toronto, has worked with the Autism Research Centre since his PhD and postdoc.  

To mark Autism Awareness Month, we discuss a contemporary definition of autism and the importance of collaborative interventions to improve the lives of autistic people. 

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Dr Lai, thank you for your time. How would you define autism? 

That's a good question. Autism is an example of human variation that is characterised by neurological and cognitive differences but is also a medical condition that gives rise to various levels of disability.

So, in this way, the term ‘autism’ is too broad to effectively describe one person since the condition is complex and manifests itself differently in every individual, and is one aspect of an individual. When defining autism, it may help embrace its 'duality' - both in terms of neurodiversity and in terms of a condition that contributes to disability. 

In other words, on the one hand, autism is one form of human variation - it includes strengths, differences and challenges. On the other hand, autism is a medical condition entailing many health and daily challenges.

Only by recognising that there is this duality in autism, can we effectively progress research, and look into those interventions that are so desperately required for the wide range of needs across the spectrum. 

Can this so-called duality affect an autism diagnosis? 

Well, it definitely makes it challenging to draw a clear diagnostic line, especially as genetic or other biomarkers are not yet available, and the current diagnosis is defined solely by behaviours. 

From a medical point of view, a clinical diagnosis should be made based on both the intensity of the autistic characteristics and the disability level (in other words, the difficulties people face daily, mainly attributable to those autism characteristics in the context of a neurotypical environment).  

But a medical diagnosis cannot be made if there is no evidence of disability or significant impairment in everyday functioning. So it can be a challenge. Having said that, recognising that certain autism traits are part of one's personal characteristics that influence how one thinks, feels, and communicates can be very useful, even if the criteria for a clinical diagnosis are not met.

For many, this conversation may sound a little controversial...

It's possible. But having worked in the field for more than ten years, I believe that only by acknowledging the duality of autism and harmonising different views, can autistic people and their families be supported. 

Crucially, when it comes to designing interventions, having this conversation might also help reduce the tension between those who celebrate neurodiversity and those who experience autism as a profound disability. These two views should not be polarised as mutually exclusive; otherwise, we risk holding back progress.

For example, the world is becoming more aware that small changes to the environment can make a massive difference in the quality of life of an autistic person. This isn't the opposite of acknowledging the differences that make a person unique. 

Tell us more about the environment. How can it affect the life of an autistic person? 

Autism emerges early in life, with strong genetic backgrounds; but is also shaped by subsequent gene-environmental interplays. It's the classic connection between nature and nurture that shapes the development of the individual.

So when we design interventions, should they focus on helping the individual adapt or change the environment? 

Both! Interventions should support and facilitate the development of the individual (for example, teaching communication skills to a young child); but they should also look at minimising barriers, for instance, by reducing sensory overload to minimise a person's anxiety. 

Additionally, interventions should also focus on how the environment can 'fit' and support the person. In our research, we call this "the person-environment fit", an approach that is thankfully becoming more popular - and it's a crucial one! 

It is no longer solely about interventions for the individual and how they can change to better adapt to the world. It is also about improving the environment around them, with interventions such as enhancing peers’ understanding of autism, reducing stigmatization and bullying, changing non-autistic people’s communication style, removing the feeling of clutter or chaos, keeping the lights lower and free from flickering, ensuring designated quiet zones away from crowded areas, and so on.

Is this idea applicable to every situation?

Yes, I believe it should also apply to every context. Wherever it may be – at home, at school, in the office, at the shop, on the playground and even where we worship – we can make improvements to ensure these places can be more 'autism-friendly' and truly inclusive.

How do we make sure these adaptations are really what autistic people need? 

Designing such interventions should always be collaborative, with autistic individuals, families, and service providers taking a shared decision-making approach to maximise the individual's potential, minimise barriers, and optimise the person-environment fit.

Thank you for sharing your perspective. 

No, thank you for raising funds for autism research.

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