EducationMental Health

Autism: A Guide to Understanding Neurodiversity

Autism spectrum disorder is a combination of early-appearing social communication deficits and repetitive sensory-motor behaviours associated with a strong genetic component as well as other causes. The worldwide population prevalence is about 1%. The prevalence of autism spectrum disorder (ASD) are reportedly rising in the west with similar trends in India as well.

MedPiper Technologies and JournoMed with Daffodil Health conducted a webinar on April 22, 2022, titled “Celebrating Autism – An Awareness Webinar in Association with Daffodil Health” where the speaker Ms. Rakshita Shekhar gave an overview of autism and the difference between the literature and lived experiences of persons with autism. Dr. Rakshita Shekhar is an educator and consultant with a Master of Arts in intellectual and developmental disabilities from the University of Kent, UK. She works as a teacher with several schools and is passionate about autism.

Daffodil Health shared an introductory video where Mr. Amal Kiran, the founder and CEO of Daffodil Health gave an overview of their application and the services they provide through their digital platform for the developmental needs of children.

What is Disability?

Disability is not just limited to the loss of limbs or issues with memory. The United Nations Convention on the Rights of Persons with Disabilities explains disability as an experience in the presence of the atypical body which is chronically not supported. This leads to severe decrease in the ability to function and contribute to society.

What is Autism?

Autism is a subset of the naturally occurring neurological diversity in humans.

What is the Autism Spectrum?

The core feature of autism is a psychic profile. If we look at psychoeducational tests, a non-autistic person with no intellectual disability might have a variation in their skills between 5 to 10 points. In autistic individuals, the difference between the strengths and weaknesses can go between 100 points. For instance, an autistic individual might be very good at a certain skill but might be very bad in another aspect.

This extremely uneven and spiky profile of a person is the core feature of autism. This spectrum resides inside every autistic person. For instance, the speaker is communicating well in the current setting of a zoom call where the audience is muted and her presentation has been previously prepared. But if it were to a face-to-face situation, she would struggle with the same task since she won’t be able to cope with the sound sensitivity which would affect her ability to socialize and communicate.

How is Autism classified?

Although it is convenient to classify Autism into mild, moderate, severe, low functionality, and high functionality, it is not helpful for autistic individuals as it does not show which areas their strengths in their impediments lie, which they would need support with. Also, this functionality is a function of the support being given. For example, the functionality of the speaker is excellent on a zoom call. When it comes to face-to-face social interaction, the functionality will dip drastically due to the sensory overload.

The speaker shared another instance from her days at school where she would be a quiet child in the classroom but had a personality shift when she came back home where she would be aggressive. Due to which, her parents took her to the psychiatrist who classified it as a behaviour problem with a lack of respect for elders and advised physical punishment.

Pondering on her time back then, she now realized that tolerating the sights, smells, touches, lack of understanding of social cues, and bullying, exhausted her mental capacity to such an extent that when she came back home she would not have the energy to behave in a socially appropriate manner. This dichotomy is seen in autistic children and is usually a result of how much pressure is being put on their brains.

Functionality is an outcome of their environment, and hence if somebody is classified as mildly autistic, they might have days where they are having significant difficulties in functioning. If somebody is labelled as severely autistic, their strengths might be missed out and subsequently their opportunities in life.

Is Autism a disorder?

Autistic persons do not believe that their condition is shameful since they inherently know that they have gifts that others do not despite being aware of their weaknesses. Advocacy groups globally are advocating for the word ‘disorder’ to be removed. Some clinicians have started using the word ‘condition’ but this still bears negative connotations.

Then how is Autism a disability?

It is still a disability as the community is marginalized and their atypical bodies are chronically lacking support. For instance, the physical distress an autistic person experiences due to sensory overload might not be visible to their peers and are often asked to adjust.

But Autistic behaviours are not appropriate?

As individuals can empathize with children suffering from other disabilities such as blindness, they are more likely to be receptive to their coping mechanisms. Meanwhile, we don’t understand how the autistic brain works. A lot of therapists and clinicians focus on changing the behaviour of autistic children without understanding the underlying cause.

Then why do Autistic people behave so oddly?

Autistic researchers have proposed several theories to explain their behaviour such as:

  1. Sensory Perceptual Theory – The sensory system of autistic persons behaves differently to such an extent that they perceive and process information differently.
  2. Monotopism Theory – The autistic brain is considered to be an attention tunnel where only those things inside the tunnel will get attention meanwhile that outside will not. Further research is going on regarding this idea and its relation to the developmental trajectory of autistic children.
  3. Bayesian Theory – Based on the Bayesian mathematical model, this theory implies that the autistic brain looks at specific tasks with great precision.
  4. Polyvagal Theory – It states that the responses of autistic persons are due to a perceived high threat level. Microaggressions throughout the day cause complex PTSD which gives rise to features of autism.

Overall, these theories are evidently indicating that autistic brains are not deficient but they are inherently different in their cognitive processes.

The double empathy problem

Autistic people cannot empathize with non-autistic people and vice versa. The only way to solve this problem is to listen to both sides.

What is the cure for Autism?

A Twitter survey answered by around 10000 people, illustrated that about 30% of people wanted a cure for autism. However, the majority of the autistic people don’t want a cure. Meanwhile, the majority of non-autistic people want a cure.

How do we help our Autistic loved ones?

  1. Total communication in terms of communicating in any way possible not restricted to speech.
  2. Offering sensory accommodation and identifying their sensory triggers.
  3. Person-centered support including medical and allied medical personnel

Author:

Rupali Sachdev

Rupali Sachdev is an intern doctor at Grant Medical College and Sir JJ Group of Hospitals in Mumbai. With experience in writing, design, medical technology, public speaking, and social service, she believes that doctors need to broaden their horizons and look at patient care more holistically.

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