By Sukanya Sharma
‘People with autism are anti-social
People with autism are stupid’
These are some common myths about autism, Radha Iyer, a parent of a 9 year old with Autism Spectrum Disorder tells The Health Collective. While some people feel that children on the spectrum are incapable of living an independent life, she knows of children who travel independently, and others who grow up to pursue advanced studies, even work at “mainstream” firms. The fact is — even in urban India today — there are several myths about the condition.
“One myth I would like to bust about autism is that children with autism are also intellectually challenged. This isn’t true. These children may have some exceptionally good skills in certain domains. Some may be very good with calculations for instance,” says Kaneenica Ninawe, a clinical psychologist working in King Edward’s Memorial Hospital who has worked with children on the autism spectrum.
Some people feel that children with autism are violent. As Iyer explains, Younger children especially “face a lot of sensory issues. (They are) disturbed by loud noises, crowds, light…Some react by jumping around and clapping around, which may seem violent.”
AUTISM SPECTRUM DISORDER IN INDIA
In India, at least one in 89 children aged between two and nine years have been diagnosed with autism, according to a Hindustan Times report last year. To quote from the HT story, “An extrapolation of the data on 2011 census would mean that as many as 2.2 million children and 13 million people in the country live with the condition.”
WHAT IS AUTISM?
Autism Spectrum Disorder is used to describe a development disorder that impairs the ability to communicate and interact. There are challenges with social skills, speech and non-verbal communication, and also certain unique strengths and differences.
As Ninawe tells The Health Collective, “Parents need to be made aware of the signs and symptoms of the disease.
For instance, children with autism may:
Have speech difficulties
(*Defined as a restriction in range or intensity of display of feelings on the Encyclopedia of Mind Disorders; can include difficulty processing communication or instructions)
Limited or no eye contact
Prefer playing alone
Get upset by minor changes in environment
Perform repetitive behaviour like flapping, rocking or spinning, repeating certain words or phrases again and again
Refer to themselves in the third person
“If such signs are noticed parents, need to get the child assessed from trained medical professionals as soon as possible for early detection. One needs to understand that this condition is not like other physical illnesses that will be cured. However such individuals can definitely learn to become functional,” Ninawe adds.
Children on the spectrum are sometimes described as in living in a world of their own, and it becomes the job of the caregiver/parent to try to bridge that gap.
Iyer, the mother of 9 year old Kartik, tells The Health Collective,
“We need to be aware of the needs and challenges of the child. And we also have to slowly push him out of the comfort zone. Parents need to understand that these kids need ample amount of time and space to get comfortable with their environment, and therefore patience is the key. Also, the care should start with zero expectation, as the child may feel pressurised otherwise.”
Also important to highlight is the fact that Autism Spectrum Disorder doesn’t mean the will to communicate or interact is zero; there are those on the spectrum who are willing to be social, but don’t know the approach to communicate.
IMPORTANCE OF EARLY INTERVENTION
Early intervention is vital to understanding ASD and how to make the environment more comfortable for the child. It forms a base to help children follow and process instructions or communication better.
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Parents also have to be watchful of the interests of the child. Assuming that their child is limited to taking up only a certain type of job is equal to limiting choices for them. Let kids explore their environment, and choose their own area of interest.
Iyer, who volunteers with the Forum for Autism, tells The Health Collective that that people with autism have varied abilities — some do very well in the fields of art and music. She adds, that some companies also employ people with autism as part of their “diversity hiring” process.**
ADVISORY FOR PARENTS:
It’s challenging but aim to educate yourselves and update yourselves every day; read, meet other parents/caregivers, speak to professionals, attend support group meetings
Start with zero expectations. Taking care of a child on the spectrum can get enormously challenging but one needs to keep working on goals and not get disappointed by failures
It is important to have a right team of therapists who help you in this journey of growth. It is important to build a bridge of trust and understanding between the parent and the therapist
It is also important to take care of your own mental health. Speak to other parents, share stories of growth and failure. Support groups are a great way to communicate and also give some perspective. Know that you are not alone
Encourage others to accept your child the way s/he is. Help remove pressure on yourself and your children
How can we change the way people perceive Autism Spectrum Disorder?
Conversation, conversation, conversation.
“The more open you are about your child and the challenges he faces, the easier it is to get help. We need to let go of the ‘what will they say/think’ attitude. I’ve come to realise that there will always be someone who is ready to help if you are ready to ask,” Iyer says.
Also, we have to start by making the local ecosystem as supportive as possible; which will only start by conversation. In Iyer’s neighbourhood, people who are aware about the challenges of her child come up to help him.
“They include my child in social activities, some make small talk with him, and they are sensitive to the condition – taking baby steps at home, around your local environment helps a lot.”
Views expressed are personal. If you want to share your journey with us, do get in touch via comments or email; tweet us your feedback @healthcollectif.
(**This comment was updated on April 3, for clarity and to better convey what the interviewee said, and include “diversity hiring”. The original statement was: Iyer, who volunteers with the Forum for Autism, tells The Health Collective about the various jobs that children with Autism have taken up: From being artists, to musicians, to mainstream employees at JP Morgan and Sachs, to pursuing advanced studies in vocational training, these kids have explored it all, thanks to parents who provided them with a safe environment to grow.)
Disclaimer: Material on The Health Collective cannot substitute for expert advice from a trained professional