No one label fits all

Autism spectrum disorder (ASD) is a complex disorder of brain development characterised by difficulties with social interaction, verbal and non-verbal communication and repetitive behaviours.

Scientists now believe that ASD is most probably caused by a combination of genetic mutations and environmental factors. There isn’t only one cause of autism just as there isn’t only one type of autism. This is why it is a “spectrum” disorder, its severity ranging from mild symptoms to severe ones.

And this is also why each individual with autism is unique. Many individuals have average or above average intellectual ability. Many are visually and musically inclined.

Some cannot communicate with words but are able to use other means to convey their needs. Some are intellectually challenged and may need support. While others are able to live and work independently.

The label ASD or autism is useful in that it leads us to explore, to question and to reject or accept. But in no way is it self-explanatory. I used to think that a diagnosis meant everything.

“Why does he lick his palms that way?”
“Why does he take his shirt off as soon as I put it on for him?”
“Why will he eat only French fries and nothing else?”
“Why does he laugh for no apparent reason?”

It’s because he’s autistic, of course. And the parents would look at me with bewilderment and worry, but hesitating to ask what I meant. But the term ASD or autism is a label. It didn’t and still doesn’t explain why a child afflicted by it behaves in a way that is different from the rest of us.

So, why does he lick his palms? Perhaps because he needs to experience the sensation of it. Why does he remove his shirt? Perhaps because he is sensitive to the feeling of the shirt hanging on his body. And why does he laugh for no apparent reason? Perhaps because he is thinking of something that tickles him but has not found a way to share it with us.

He behaves the way he does because his brain is wired differently from ours. But a differently wired brain does not equal inferiority. Children who are developing typically are often subjected to labels themselves. A child who speaks a little later than the rest of his peers is a “late talker.” A child who moves around a lot and doesn’t like to sit and listen to stories is “hyperactive.” A child who does not want to do math is “lazy.” A child who prefers only certain foods is a “fussy eater.” A child who prefers to play alone is “antisocial.”

When someone does not behave in a way that’s expected of him, we are quick to label him. He is different from the other “normal” children and needs to be changed into someone resembling “normal.”

When I started out as a speech pathologist years ago, I set about changing children with ASD. They had to learn to communicate with words, to sit quietly, to respond when spoken to, and to give their undivided attention during therapy. This was done with total disregard to the uniqueness and strengths of each child.

I was blinded by the diagnosis. It did not occur to me then that what a child can do and what he is good at are much more important than what he cannot do or is having trouble with. I was continually describing and defining these children by what they could not do.

I was also putting the responsibility for change squarely on these children’s shoulders. They had to change, I was fine.

I could not yet see that the energy I brought into the therapy session had an effect on the children’s behaviour. I did not yet realise how my thoughts, feelings and expectations affected our relationship. I was not aware that my behaviour could prevent a child from responding well.

Years later, I learned from my own children that whether one has “normal” children or those with special needs, labels are not important. If your child eats mostly mashed potatoes and noodles, he may not be “fussy.” Perhaps his gums are hurting due to his erupting teeth or he may have enlarged tonsils that hurt when he swallows. Or perhaps, he simply had too much milk to drink prior to mealtimes. Calling him fussy does not help solve the problem. But observing why he behaves this way and what caused the behaviour will.

Similarly, if a child with ASD is continually banging his head on the floor and screaming for no reason, he isn’t doing it because he is “autistic.” He may be doing it because something is distressing him and he doesn’t know any other way of expressing it. Understanding this allows us to discover those distressing factors and show him a more powerful way to communicate his needs.

I learned that children learn through observation and when their needs are respected. I have been caught many a time not paying attention to what my children are saying, continuing to type away on my laptop while they are talking to me, interrupting them and not respecting their decisions. They say: “You’re not listening!” and “Mama, look at me!”

So when I want a child with autism to pay attention to me, I have to first give him my undivided attention. When I want him to develop eye contact, I have to be face-to-face with him and look him in the eye. When I want him to listen to what I’m saying, I have to do some listening myself first. When he refuses to play with trains, I have to respect that.

Perhaps a change in our perception is in order. Paul Collins, an American writer and a parent of an autistic child, puts it succinctly:

“Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg.”

Farah A. Mohd Alkaf is a speech language pathologist and a member of the Malaysian Association of Speech & Hearing. She will be conducting a workshop for parents and teachers on Engaging Children With Autism Spectrum Disorder on Saturday, July 14 , in Petaling Jaya, Selangor. For more information, contact Coreen Paul of JPL Training Track at [phone] or email [e-mail].