‘I do not suffer from Autism, I suffer from the way you treat me.’
– Tyler Durdin
(Autism Parenting Magazine)
In 2010, a Hindi feature film titled ‘My Name is Khan’ starring beloved Bollywood actor, Mr Shahrukh Khan released in theatres across India and became an instant hit. While the film did a wonderful job of entertaining audiences, it was also lauded for creating public health awareness about Autism, a common neurodevelopmental disorder seen in individuals. In the movie, we see Mr Khan play an autistic man, Rizwan, who is living in the United States with his wife and stepson. When a tragic incident occurs in his family, Rizwan sets off to meet the President of America, after his wife angrily admonishes him to do so. His literal interpretation of his wife’s words is a beautiful and heartwarming portrayal of what it means for someone to live with autism. It is also a gentle reminder of the care we need to show while interacting with autistic persons.
For the uninitiated, autism belongs to a group of neurodevelopmental disorders known as Pervasive Developmental disorders. It is characterised by features such as:
1) Impaired communication and reciprocal social interaction
2) Constant engagement in restricted
3) Repetitive and stereotyped patterns of behaviours or interests
For example, you may come across an 8-year-old child like Radha, who is extremely intelligent and excels in school. She can talk to you on a range of academic topics, but her teachers at school complain that she does not interact with other students. Her non-interest in play causes other students to tease her. But, she still does not communicate with her parents about the bullying she is subjected to at school.
You may meet a 4-year boy like Nitish, who is immediately mentally disturbed by any loud sounds that he may hear in your clinic. He may start making loud whining noises in response to external stimuli. He will cling to his parents and refuse to make eye contact or interact with you.
Unfortunately, these typical characteristics of autism demonstrated by affected children are considered to be examples of bad parenting by others. Many a time, the behaviour of autistic children is misconstrued by those around them.
Signs of autism
Stage of Development
Signs Seen Which Could be Indicative of Autism
Difficulties Faced in Diagnosis of Autism
Many of us may feel that it is only the general public who needs awareness about autism and the difficulties faced by individuals suffering from it. But, many healthcare institutions and workers also need to be sensitised to autistic patients. Look around and you and you will realise that even the medical world is not designed to fulfil the needs of these patients.
If one were to examine published Indian literature about the prevalence of autism, you will find most papers reporting that there are no epidemiological studies at present that can give us an accurate estimate of the same. The few studies existing today have probably under-represented the prevalence, due to the absence of definitive diagnostic criteria for autism. Thus, many children with autism may go undiagnosed until they reach adolescence or even adulthood.
As a consequence, they do not get the help they need and may spend a larger part of their childhood feeling frustrated and unhappy as they are unable to cope with formal schooling or engage in meaningful interactions with peers.
How can we, as healthcare workers, be in a position to care for an autistic population when we have not even accounted for the exact number of people suffering from it?
Autism is difficult to diagnose as there are no specific diagnostic tests available for us to do so. It has to be diagnosed only based on observation of the child’s developmental history and behaviour. This can be best done by health experts trained in the same such as pediatric neurologists and developmental experts, who are well-versed with the signs and symptoms of autism.
While the formal diagnosis of autism can be handled by the relevant experts, every healthcare worker should look for symptoms of autism in the children and adolescents they treat. It becomes our duty to refer these children so they can get the guidance and help they need.
Early exposure to these therapies helps autistic children grow up in well-adjusted environments and lead an independent life as adults, based on the severity of their condition.
Creating a Conducive Environment for Autistic Patients in Healthcare Setups
Treating autistic patients is not the sole responsibility of just developmental experts or neurologists. Autistic patients have a normal life span and from childhood to adulthood, they will require care from other health experts such as ophthalmologists, nurses, general practitioners, dentists, physiotherapists and others.
Knowing that autistic patients may visit your setups, the following care could be taken while designing them:
- Use of low arousal colours like light pastels to be used for decoration as autistic patients tend to react to bolder colours like red.
- Ensure a quiet environment. You should avoid exposing them to auditory stimuli like loudly whirring fans, ACs, harsh music etc.
- Avoid the use of harsh lights and a cluttered waiting area.
- Soothing, soft instrumental music can be played in the background during your consultation and treatment.
- Appoint these patients at a time such that they do not need to sit in a crowded waiting room.
- While interacting with these patients, keep the sentences short and concise, and use simple language.
- Visual cues are easier for these patients to pick up. So, keep posters or leaflets in the clinic through which you can explain the treatment.
- Avoid touching these patients unless you feel they are comfortable receiving your touch.
- Respect the fact that these patients prefer repetition in routine and have a fixed protocol and the same personnel attending to them at each follow-up visit.
Patients with severe symptoms may require sedation even for routine checkups or chairside medical procedures. In such cases, these facilities should be made available to them at hospital setups.
In conclusion, an autistic individual is not a disabled individual, rather he is an individual with altered abilities. By receiving appropriate care, they can contribute a great deal to society. However, this can only happen with the help of medical personnel. Ensuring autistic patients receive the desired health services is the collective responsibility of our fraternity.
From today, let us make every effort to ensure, we change the world they live in!
Chauhan A, Sahu JK, Jaiswal N, Kumar K, Agarwal A, Kaur J, Singh S, Singh M. Prevalence of autism spectrum disorder in Indian children: A systematic review and meta-analysis. Neurol India 2019;67:100-4
Faras H, Al Ateeqi N, Tidmarsh L. Autism spectrum disorders. Ann Saudi Med. 2010;30(4):295-300. doi:10.4103/0256-4947.65261
Scottish Intercollegiate Guidelines Network (SIGN) 98. Assessment, diagnosis and clinical intervention for children and young people with autism spectrum disorders. A nation clinical guideline. 2007 July