Autism can have a profound effect on individuals and families, but understanding and support can make a huge difference. Every year, Ummeed Child Development Center joins the global ‘Light It Up Blue’ movement by US-based organisation Autism Speaks, to help spread awareness on the condition on the World Autism Day on April 2, reports Vibha Singh
Nobody thought that there was anything amiss when he was one-year-old. At 14 months I was comparing him to other children, and I felt they used to do a lot more, but it still didn’t … cross my mind that there is problem. His only problem was that he was not communicating and not responding but other things he was doing. He used to understand us if we told him anything.
Many parents with children suffering from autism share these kinds of thoughts with paediatricians as most of them are unaware of the symptoms and remedies available. When the movement for “autism awareness” first began, the goal truly was as simple as making people aware of Autism Spectrum Disorder (ASD). And while there is still a great need to inform people about autism, the focus has shifted away from simple awareness — that is, letting people know that the disorder exists — and toward the more complex idea of education and acceptance. Autism is a disorder that is generally detected between one and three years of age. Since it has got to do with developmental delays, it requires special attention.
But now the percentage of people who are actually unaware of ASD much smaller than it was just a decade ago and, thanks to many non-governmental organisations (NGOs) and global campaigns, there is widespread knowledge. Dr Koyeli Sengupta, director of Autism Intervention Services at Ummeed Child Development Center says, “One of the biggest barriers is social stigma. I hear stories all the time about how neighbours keep their kids away from kids with autism, how parents have no social circle, how restaurants don’t like kids with autism and behavioural challenges. It is important to point out that autism is not madness, these kids are not like thus by choice and how society needs to show acceptance. That is the main reason why Ummeed run it’s Light it up blue campaign to create awareness.”
Need of awareness
No one knows what causes autism. Though genetics play a role in the development of the disorder, there are many other factors that affect the onset and severity of autism. It is important for parents to realise that autism is not a result of something you did or did not do for your child. Unfortunately, while awareness has grown over the past few years, a great deal of misinformation (or a lack of information) has also spread with it. Dr Vibha Krishnamurthy, developmental paediatrician and founder and medical director of Ummeed Child Development Center says, “Society’s misconceptions about autism range from outdated information to the absurd. Research shows that children with autism whose parents are very involved in various aspects of their treatment are more likely to make progress. As parents, they have to learn and use strategies that can help their child progress. The earlier the intervention is implemented, the better the outcome for the child.”
But while choosing an intervention plan, parents should educate themselves on the options which have been scientifically tested and shown to be effective for managing autism symptoms. The best intervention plans are those which incorporate aspects of all of the educational and behavioural Interventions therapies as per the child’s needs and abilities.
Child’s skills could be an asset
Children with autism present with a whole range of intellectual abilities. Some may have higher than normal IQ, while others qualify for a diagnosis of mental retardation. Their skills may be stronger in some areas that includes memory, math, music and weaker in others speech and self-care. “Regardless of their abilities, it is important for children with autism to attend school because it provides a structured environment with clearly laid out expectations as well as opportunities for interacting with children of their age.
Most of the children are often better at visual and detail-oriented tasks such as puzzles, for example. It is important to encourage their strengths and provide them with outlets for their interests and hobbies.
Sapna Mohite, mother of 10-year old boy says, “My son used to respond every time my elder son played his piano. We could feel the happiness in his eyes and initially I used to put his hand of keyboard but gradually he started practising with his brother. We are planning to ask the music teacher to take classes for him.”
Learning lessons for parents
Consulting with other parents and joining a support group is a great way to learn about the disorder and how to deal with the daily challenges of having a child with autism. Also parents should talk to their extended family and share the child’s diagnoses with them. Family members can become greatest source of support.
One should seek guidance and collaborate with medical professionals like a developmental paediatrician or paediatric neurologist and therapists to devise an intervention program for the child. If parents learn and continue simple, therapeutic strategies at home that includes the play-based techniques these help the child function better.
Vibha advises that, “When speaking to the child, use short sentences and constantly comment on what you or your child is doing to continually expose them to language. Parents should avoid repeatedly asking questions as this can be difficult and frustrating for the child. For children who have trouble with speech and language, encourage the use of visual aides, such as PECS and picture
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schedules, for communication. Using signs is also an excellent option for some children with autism.”
What is autism?
- A developmental disability that affects communication, social interaction, and play skills.
- Affects about one in 88 people.
- Occurs approximately four times more in boys than in girls.
- A brain function and should be diagnosed by a medical professional.
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Signs of autism
Developmental: Trouble learning language, communication, both spoken and non-spoken like eye contact, gestures, and pointing.
Behavioural: Trouble processing things they hear, see, smell, touch or taste.
Poor eye contact, compulsive behaviour, impulsivity, repetitive movements, self-harm, or persistent repetition of words or actions
Cognitive: Intense interest in a limited number of things or problem paying attention
Psychological: Unaware of others’ emotions or depression
Also common: Anxiety, change in voice, sensitivity to sound, or presence of unusual behaviours (e.g., hand flapping, rocking, biting), play that is repetitive and unusual and strong preference for sticking to a routine.