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Last Updated Friday September 22 2017 11:46 AM IST

Heal Thy Self | Children with autism: A parent’s guide

Nirmala Ferrao
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Autism

How can an 18-month-old keep you up at night without even making a sound? asks a public service advertisement.

Perhaps the reason you’re lying awake at nights is because of the back-and-forth head-rocking that you’ve noticed in your toddler with disturbing frequency. Perhaps it’s the way he seems to keep interminably lining up his toys instead of playing with them like most other toddlers do.

Or could it be the fact that, when you smile and coo at him, he never – ever – smiles back at you?

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Or that, by age 2, he speaks no words – not even “Mama” or “Dada”?

As human beings, we don’t like to be gnawed at by incessant anxiety and doubt. So, we start rationalizing, and very soon we’re sliding down that ‘maybe’ slope:

“Maybe he’ll outgrow it”

“Maybe he’s really focused”

Read: Heal Thy Self | How to ensure your unborn baby’s mental health

“Maybe he just likes being neat”

Autism

“Maybe we don’t spend enough time with him”

But maybe… maybe…it’s something more serious. Like autism.

For most people, their first (and, possibly, only) acquaintance with autism is Dustin Hoffman’s character in “Rain Man”. In the movie, Hoffman, in the character of Raymond Babbitt, has astonishing savant abilities in mathematics and memorization. His brother (played by Tom Cruise), recognizing his incredible gift with numbers, takes him off to Las Vegas so that he can play the tables and win some money.

“Rain Man” made “autistic savant” a household word. But, this multi-Oscar-winning movie also left most viewers with the misleading impression that all autistics are savants. While about 10 percent of real-life autistics do indeed have exceptional skills in a specific area (such as math, music or art -- Einstein, Newton, Mozart, Michelangelo, Charles Darwin and Socrates are all “alleged” autistic savants), most autistics do not possess prodigious abilities or a phenomenal memory. Autistic children (like non-autistic children) presumably reserve the right to not all be the same. In fact, autism is a “spectrum disorder”, with wide variations in the nature and severity of symptoms.

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At one end of this spectrum lies the mildest form of autism, Asperger’s Syndrome (AS). Those with AS frequently have average to above-average intelligence. AS is therefore also called “high-functioning autism.” Autistics at this end of the spectrum may display extraordinary talent -- or, more correctly, they have an inconsistent profile -- excelling in one area but showing low performance in others.

Autism

A real-life instance is that of a young man who worked as a sports newscaster. He had a spectacular memory for numbers (like Raymond Babbitt) and could reel off the statistics for the World Football Series for the previous two decades. But, over these decades, he hadn’t learned to dress himself independently or to lace his own shoes – to perform what are known as “functional living skills.” At the other extreme of the spectrum lies the most severe form of autism, known as “Autistic Disorder.” Children with this form of autism may also often have mental retardation and seizures.

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Most children with autism, however, fall in the space that lies between the two extremes of Asperger’s Syndrome and Autistic Disorder.

But, although each child on the autism spectrum will have his or her own pattern of symptoms, three chief areas of deficit are found in all children with autism:

1. Communication deficits

Autism

For instance:

» Fails to respond to his or her name (or to simple questions or directions) by appearing not to hear or not to understand you at times

» Repeats words or phrases rather than responding to questions

» Doesn’t speak or has delayed speech, or loses previous ability to say words or sentences

» Speaks with an abnormal tone or rhythm — may use a sing-song voice or robot-like speech

2. Social interaction deficits

» Displays no interest in playing with children of the same age

» Doesn’t express emotions and appears unaware of others’ feelings

» Inappropriately approaches a social interaction by being passive, aggressive or disruptive

» Has poor eye contact and lacks facial expression

3. Restricted and repetitive behaviors

» Makes repeated movements such as rocking or hand flapping, or even self-harming motions such as head-banging

» May become fixated on an object or activity with abnormal intensity or focus

» Has odd movement patterns, such as clumsiness or walking on toes, and has odd, stiff or exaggerated body language

» Moves constantly

» Shows a marked preference for rigid routines, which if not adhered to, can cause him to just totally fall apart. For instance, an autistic child may insist on following the same route to school every day and entering by the same gate. When you tuck him into bed at night, he might want you to lay the sheet with the same edge covering the upper part of his body.

Children with autism are also at higher risk for some mental disorders such as anxiety disorders, attention deficit hyperactivity disorder (ADHD) or depression.

Autism

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Autism, which affects more boys than girls, has no single known cause. Both genetics and environment are thought to play a role. Today, it is one of the world’s fastest growing, least-understood and most mismanaged developmental health challenges.

For a very long time, Indian doctors had routinely called it a Western syndrome, doubting its prevalence here. But not only is autism highly prevalent in India, the numbers are also on the rise. No national-level survey has been done to date, so there are only guesstimates about the incidence, depending on whom you ask.

Action plan

The tragedy is that, although the early warning signs of autism often make their appearance within the first year of life, the majority of children are not diagnosed until many years later (if at all). If, as a parent, you have concerns that your child could be autistic, here are the steps forward:

Know the early warning signs. Although babies develop at their own pace, there are certain established developmental milestones. But, for children with autism, such milestones may not be so straight-forward. The following “red flags” may indicate your child is at risk for an Autism Spectrum Disorder (ASD).

» No big smiles or other warm, joyful expressions by 6 months

» No back-and-forth sharing of sounds, and no responsive facial expressions by 9 months

» No babbling or cooing by 12 months

» No back-and-forth gestures such as pointing, showing, reaching or waving by 12 months

» No words by 16 months

» No “make-believe” or pretend play by 18 months

» No meaningful, two-word phrases (not including repeating) by 24 months

» Any loss of speech, babbling or social skills at any age

Avoid falling into the trap of denial. Parents are usually are the first to notice that their child is lagging behind other children of the same age. But every parent kicks against the idea that their child is possibly “not normal.”

This often leads to a decision to “wait and see” if the child will catch up later or outgrow his strange behavior patterns. But, by hiding yourself in that comforting cocoon of denial, ignoring the early warning signs, you might wake up only much later to the grim reality of your child’s disorder -- when you’ve already lost the opportunity for the difference that early intervention could have made.

Get a medical diagnosis. In India, this is easier said than done. Amazing but true – most Indian doctors (and they include pediatricians and psychiatrists) are unfamiliar with autism and do not know how to diagnose it.

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They may dismiss the concerns of parents, telling them that each child is unique and grows at his own pace; or that their child is just “going through a phase”, or they may diagnose the child as suffering from “mental retardation” or, on the other hand, tell parents that their child is “precocious”.

Your best option is to take your child to a medical professional with experience in diagnosing autism, such as a developmental pediatrician or a pediatric neurologist. A child with ASD can usually be reliably diagnosed by age two.

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(Representative image)

Early intervention is key. If a diagnosis of ASD is made, parents need to get going right away because time is of the essence. 80 to 90 percent of brain development occurs before age 3, and it is during this time, when the brain is in the nascent stages of development, that it is most malleable.

Early intervention therapies capitalize on the potential for learning that the infant brain possesses, in order to limit autism’s deleterious effects. While there’s no proven cure for autism, research suggests that beginning therapy early – during the toddler or pre-school years -- can significantly improve communication, social and daily-living skills in children with ASD.

For all the advancements that science has made in this field in the past few decades, nothing has been found that can replace early intervention as the most effective weapon for combating autism.

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A team approach is critical. There is no one-size-fits-all therapy because each autistic child is different. Not only do the symptoms and behaviors combine in different ways and vary in severity, but they also often change over time. The treatment strategy therefore needs to be tailored to the individual needs of each child, and of course to the family’s resources.

As a parent, you will need to work with the pediatrician to build a care team. This should include specialized therapists (such as speech, occupational and physical therapists), as well as a child psychologist and perhaps others, too, such as a psychiatrist.

Read: Catch them before they fall: To parents of kids with special needs

And, of course, parents are an absolutely essential part of the therapy team – they are the key informants and advocates. Outcomes in autism are always better with family involvement. What is known as parent-led therapy is an important, research-backed component of treatment.

As an active partner in the treatment program, be prepared to offer observations and your own experiences with your child, raise concerns, state preferences, and request help, including referrals to additional resources.

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A ‘pet therapist’ can be invaluable, too. At some autism centers, ‘therapy dogs’ are being called into action to help children with ASD. The published research evidence on whether such “pet therapy” helps is limited but promising.

It finds that, where dogs were used during formal therapy sessions to help children settle in, get engaged and be more open to communicating, the kids were indeed more talkative, socially engaged, smiled more and were less aggressive when their canine companion was present during therapy.

Medications may help. Prescription drugs may sometimes be used to treat symptoms such as aggression, or conditions that may co-occur with ASD, such as anxiety, depression or hyperactivity.

(The author, a former editor of 'Health & Nutrition' magazine, works as a counseling therapist)

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