Autism - Myths and Facts

Down's Syndrome

Life with Maher...

On the occasion of World Autism Awareness Month, I am sharing another article about Maher. This has been written by his younger sister who has always been very eloquent about her experience of growing up with a sibling on the autism spectrum.

If this were a book, its description blurb would be: “The smell of chocolate, the taste of water, the color mauve… how would you describe these to someone who isn’t aware of their existence?

You allow the individual to experience them."

Maher – my Elder brother - was born on 12 December 1997 and I was born on 28 August 2000. It was what transpired in those three years in-between that made my birth slightly more significant and purposeful than is normal to my parents.

Within a year of his birth, Maher was diagnosed with moderate to severe Autism. My mother had to confront this numbing reality virtually all by herself as my father, the sole bread earner of a joint family, was miles away in a different country. I can only fathom the then state of her mind, by the tears that gather in her eyes every time she tells me about it.

She was forced to accept that her child would not lead an independent life, he would have to be financially secured, he would not work, he would not be married, he would not have children. He had to be trained to do even the most menial tasks and he would have no sense of danger. He would always be dependent.

It was in the midst of all of this that I was born. A second child was always a risk but it was one my parents had to take. I was never a pampered child, I found solace in books and my thoughts when my mother and brother were out the entirety of the day attending multiple therapies. I remember sitting on the sofa watching my mother train Maher, rewarding him with a French fry every time he did a task right. I always wondered why I never did those tasks, but again I didn’t need to be taught the difference between a happy face and a sad face.

It never took time for me to accept Maher, he has always been a constant in my life. He was my first friend and till date remains my best friend. Maher does not have developed speech, he does not solve algebra, and he does not write poetry. Maher is different. But, don’t we all strive to be different and to stand out?

Maher gives me a purpose. I learn from him every step of the way, he has taught me perseverance and the importance of trying. He was a kid who took ages to learn how to

use a toothbrush, but in the end, he did learn. He teaches me to appreciate life, to value the choices I have, to be kind to other people, to accept others. He makes me want to make an impact in this world, which I’m sure he would have done if he could do what I do. Yet, he chooses to remain in the shadows guiding me.

Maher will always be the person I admire most in the world. My biggest pride and joy will always be the honor to be his sister. He will always have a special place in my heart no matter where I am in the world. He has made me who I am today and I will always be dependent on him. He is unique. He is kind. He is intelligent. He is strong. Life with Maher will always be a pleasure.

It baffles me as to how humans as a race can accept the increasing possibility of complete automation of the world we live in, and yet we cannot accept each other. We have thousands of different languages and yet we cannot accept the language spoken by a child with special needs. We don’t let them socialize with our children because they behave differently from us. I feel deep – despite claims to the contrary - our belief system remains ancient. 

Fiza

Success....

Often when a new parent walks into my clinic, it is not uncommon for them to ask me how many of my past clients have been “mainstreamed”. As a therapist I am willing to acknowledge that the success of intervention lies in how near “normal” the child has reached. But as a human being I often wonder if a child is a success only if he goes to a mainstream school? how can we ignore the success of the child who despite all odds, stood tall in every task he completed? Are academics the only measure of success? At times like this, I often remember a mother and child who I taught sometime between 2004–2008. 

I first met Maher and Rahath when Maher was 4 years old (Names not changed, they deserve the credit for what they have achieved). He had already been through an early intervention programme and was referred to me as a child who was not ready to enter the mainstream. 2 or 3 years down the line, Maher had still not entered the mainstream and he went on to join the special school I was running in those days. 

At 5 Maher could sight read a number of words. He could do simple addition. And by 6 he was a whiz at using Microsoft Paintbrush. Every image he created on Paintbrush was a wonder for us. He had taught himself to use Paintbrush with absolutely no help whatsoever. And he wouldn’t allow any interference with it to the extent that Rahath would save the images after tricking him away from the PC. Rahath never stopped marvelling at his ability. She herself was technologically challenged in those days. All the while Maher remained minimally verbal. Drawing words out of him was more challenging than pulling teeth with a pair of tweezers. 

This was a mother who had totally devoted herself to her children. She was staying here in Bangalore solely for Maher as she felt that the place where her husband worked did not have adequate special education facilities. With a lot of persuasion, she finally moved back with her husband. But she never forgot the early intervention years and remained in touch.

Whenever someone asks me about my successes, it is so hard for me to disregard Maher. I know that if I speak of Maher to a young parent, he/she might feel disheartened. He/she might even feel if this is a success then what can we really expect out of this therapist. Yet Maher had been diagnosed as severely autistic. Yes, he is still minimally verbal. But his mother never gave up on him. And she never stopped appreciating him. Every visit to Bangalore she never forgot to meet me and thank me. When I asked her permission to use his video for this write up, her reaction was, “you are his guru Vanitha, you can use it”. 

Rahath’s belief in her son and her determination to help him at all cost is something that needs to be lauded. Yes, the child who goes to mainstream is a success but these are the real heroes. Heroes who never stop the hard work. Unlike many parents who drop out of intervention programs as soon as the child learns to speak, these children slog all their lives, just to learn every little task others take for granted. And unlike many teenagers who may not pick up their scattered belongings in their room, Maher, takes pride in pouring out tea for his mother, running the washing machine for her or even putting away her shopping. How many mothers are able to say that their child helps so much around the house?

I would like to share this little video of Maher undergoing training at his vocational centre. Proud of you Maher and Rahath!

"Bad Boy!"

“Bad Boy!” “You are such a Bad Boy!” How many times have I heard a child being berated in this way? Way, way too many times. Not just by parents but also by the supposedly trained and educated professionals.

Would these same people like it when they are told that they are “BAD”? “You Bad Mum”, “You Bad Dad”, or better yet, “You Bad Therapist”.  How many of us are willing to take criticism with grace and dignity even when it is couched in diplomatic language? And yet we have no qualms about correcting our children in the most negative manner possible.

Is the person bad or the behavior bad? Why do we persist in labeling the child when it is the behavior we are unhappy with? We speak so much about not labeling the child at the time of diagnosis and speak about addressing the challenges instead. And yet, there is no hesitancy in using a label which is far worse than a diagnostic label of ASD.  

Let us briefly look at few characteristics of individuals on the autism spectrum.

1)     Individuals on the autism spectrum have a literal understanding of language. So when you say “Bad Boy” and think of how a child on the spectrum views this statement, it can take on a much more serious meaning than when a neurotypical child hears. Under no circumstances am I considering this a lesser crime when used with neurotypical children, but I am saying that the interpretations can be different for different children.

2)     Individuals with autism have poor social motivation. This means that they are generally not motivated to interact with others. Would they really want to interact with people calling them bad?

3)     Many individuals on the autism spectrum have echolalia. It is not uncommon for the child to turn around and call you bad. Or call someone else bad. Use the language you would like your child to speak.

4)     Many of them have high levels of anxiety. They feel anxious about any kind of social interaction even without the added pressure of being told that they are bad.

5)     Many high functioning children can have low self-esteem. Once they join school they also have to deal with bullying in school. The last thing they need is for their parents and care-givers adding to their problems.

When you are unhappy about your child’s behavior, it would help if you clearly state what it is you would like him to do. Stop and think through, what led to his behavior. Very often there is a reasonably good explanation. Maybe the child cannot say it to you in so many words, but careful, quiet observation on our part can help us understand why certain “bad” behavior occurs and we can always take steps to correct. And if you must use the word bad, it would be so much better to say, “bad behavior” instead of “bad boy”. Or what about saying, “that’s a naughty thing to do”.

"My child is so stubborn"

"My child is so stubborn", how many times have I heard that from both parents and the not so aware professional. Can a child with any kind of developmental disabilities be wantonly stubborn??

The other day, I heard this from a family member and I said, "give me an example of when he is stubborn". The reply I get is, "he can say appa but never says it when I ask him to" ??!! Did you forget the diagnosis? He's practically non-verbal. Yes, sometimes neurons fire right, sometimes they don't. Sometimes he can say a word, sometimes he can't. 

Now if you think this is bad enough, another mother tells me that the speech therapist and occupational therapist are complaining that the child has become very stubborn after the vacation and refuses to work. Excuse me! But isn't that why the child is in therapy? Because he cannot always respond like a neurotypical? How does it help if you send the child back to the mother with a "complaint"? And yes, this post is aimed more at these therapist than any parent (if it is not too beneath them to read this).

There can be many reasons why a child refuses to do what he is being asked to do. The most common reason is actually the simplest one - because he cannot to what you are asking him to do. No doubt he may have done that particular task before, but remember, the child has difficulties. He may still be in the process of learning the task. He may need you to start him off before he can take over and finish the task. He may be having an off day and cannot get the start, the sequence or the whole task. This can apply to speech, fine motor, social skills or any aspect of development.

The child with developmental difficulties is not learning speech/fine motor control/cognitive tasks in the same way as a neurotypical. He is learning it with a lot of effort, after multiple tries and very often in a different way. Only he knows what effort he has made to say "appa" or to sit at the desk and work during a session. He needs to work at it over and over again before it becomes second nature to him and for some it may never become second nature. It may remain forever hard.

Is the child any less because of it? Of course not! Unlike you, he's getting back on the horse no matter how many times he falls off. If he is stubborn, it is in a good way because he hasn't given up despite all your attempts to brow beat him into being the way you want him to be.

Another reason why the child may refuse to do an activity could be because the Individual Education Program (IEP) planned for him is totally inappropriate. You may be attempting a task that he is not ready for. Any goal that is set for a child needs to be appropriately planned for and at the appropriate developmental level of the child. You can't expect the child to do something just because it is age appropriate. He may be chronologically 4 but developmentally 2 years old. Rethink your IEP if you are persistently having difficulties getting your child to do a particular task.

Always look for reasons why a child is not doing something before concluding on "bad behaviour" as the cause. And it is okay if you don't always find an answer. There may be none.

Understanding Therapy in Autism – IV - Encouraging Language Development

Communication is not just about getting our needs met but about sharing ideas, information and emotions. It is also about seeking information and gaining knowledge. Too often we make the mistake of sending the wrong message to our children. We constantly bombard them with questions and imperative statements demanding answers, answers they may not be able to readily give you. This kind of pressure makes the child feel like he is constantly being tested every single minute and he/she might “switch off”. Or worse still the child may try to deflect your attention by indulging in inappropriate behaviour.

There are a few simple ways in which we can change the way we communicate with the child in order to ensure that he communicates better.

1)     Talk Less - Yes, that’s right, you need to talk less. Constant jabber, jabber can be very irritating for any one, more so for a child with language difficulties. Quality in place of Quantity. You could use more non-verbal communication – pictures, voice modulation, gestures and facial expressions. Keep it interesting.

2)     Use Positive Language – Tell the child what to do and not what not to do. Nothing puts a child (or adult) off more than hearing the word “no”. And he’s likely to hear it more often if he still hasn’t learnt “appropriate” behaviours. Most children will either stop listening or will try to irritate the adult by doing exactly what they are being told not to do. Instead of saying “don’t hit”, trying saying, “hands be good” or “hands still”. Instead of saying, “don’t run”, you could say, “walk with me”. Try this with your spouses as well and see your relationship improve!

3)     Use Declarative Language – Constantly using imperative language which demands a response from the child can result in him/her clamming up. Too often the child is unable to answer. Sometimes as the child is learning to speak, he may just end up echoing your questions. He may also learn that the only purpose of language is to question and make demands. Language for the social sharing should be our final goal. Try parallel talk. Say the things that you expect the child to say. When you do this, you need to remember to drop the word, “say”. Example, “Bye aunty”, not “say bye aunty”. Do you like people constantly telling you what to say?

4)     Use One Language – In our multilingual scenario, it is important to stress on the use of a single language for the child. The same language should be used for general communication and therapy. And the same language for reading and writing. Too often, I have found parents insisting on the child learning to speak the mother tongue (which is fine) but they never teach the mother tongue for reading. They insist on reading and writing in English! And the child doesn’t understand a word of English because he has only been exposed to the mother tongue. A child with language difficulties may not be able to switch between languages and the first language he learns could very well be the only language he learns. Some children do go on to learn the second language but the first language may remain a strength.