How to Sift Truth from Myth – in Autism Land

She travelled all the way to Kuala Lumpur with her family to meet a renowned pandit. He told her that black magic was done by an elderly woman who was jealous of the family. To ward off the black magic, he recommended chanting some mantras and doing a puja every Friday for the next 16 weeks. To be effective, this ritual had to be done between 4am and 6am.

So she woke up early every Friday morning. The freezing, sub-zero degree temperatures in Seoul did not help the cause. The ritual had to be conducted in the open balcony. With chattering teeth and a shivering body, she chanted the mantras. She cut a lemon, sprinkled it with kum kum and lit camphor. She prayed fervently to the Goddess, to appease her, and to ask for her grace to remove the effects of black magic.

She did this for the recovery of her 3 year old son. Her little boy who had Autism.

Yes, this is my story.

This occurred 22 years ago. I was groping in the dark. I did anything and everything to ‘get my child out of autism.’

I don’t hold this against myself today. I did not understand autism then. I was young, brave and very determined. Perhaps foolish too…

I no longer carry the guilt about what I did, as the intent was right. The intent of helping my child.

And you have the right intent too. You want to help your child, don’t you? You want to do your best.

Fast forward to 2015. The world has advanced and so has science. Our diagnostic tools and techniques are highly sophisticated. Yet, there are some myths about autism which refuse to die. And when we don’t know much about the condition, these misconceptions about autism take us on a complete tangent.

To start with, let’s get a few things out of the way. Autism IS NOT about black magic, curses, lost spirits occupying your child’s body. Please don’t get lost in this world of ‘recovering’ your child. It is not about reclaiming your lost child. Steer clear of tantriks and the like.

Our children are who they are. They are beautiful and complete. Can we accept them totally for who they are? Can we help them to navigate this world effectively?

Are you aware of the myths surrounding autism? Score yourself on these autism myths and facts:

Myth: All people with autism have intellectual disability.

Fact: According to the latest research, 2/3 of people on the autism spectrum have average or above average IQs.

Myth: Children and adults on the autism spectrum do not understand anything.

Fact: This is one of the biggest fallacies. Individuals on the autism spectrum understand a lot more than we give them credit for. Hence, we need to be very careful about what we say in their presence.

Myth: Autism is a disorder of social, behavioral, speech and academic skill delays. If we can “catch children up” in these skills they will recover and can lead productive lives.

Fact: Autism is defined as a chronic, bio- psychosocial condition. Read as: Chronic=Lifelong, Biological= Brain Functioning and Psycho Social=Learning, Information Processing and Motivation.

Can autism go away? I don’t think so. Remember, just ‘catching up’ with skills will not do the trick. The foundations have to be tackled; the autistic traits in children have to be addressed.

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Myth: Developing speech is the most important goal for a “non-verbal” child.

Fact: While speech is important, there are other forms of communication that have proven to be successful for people on the Autism Spectrum. Communication intent and communication are more important than ‘speech’.

Myth: Language must develop before age 5 or else it is too late

Fact: It may be easier to develop speech and language by 5-7 years. But this does not mean that speech cannot be developed later. In fact, there is research to prove that language can develop later too. I have seen this in my practice many times. We have had students developing speech and language at later ages too.

Myth: Placing autistic children with ‘normal’ peers results in autistic children becoming better sociably

Fact: Learning to relate socially does not happen by merely being in contact with normal peers. Rather, it happens with building a back and forth feedback loop, starting with parents. It’s important for parents to understand the autistic traits in their children and address them before they think about their child’s social interact-ability.

Myth: Early intervention has been demonstrated to result in almost half of all children with autism being able to lead normal lives.

Fact: We do try to promote early intervention. However, progress can happen even later. Neural connectivity is a lifelong process.

Myth: Mainstreaming a child with a full time aide is always better than special education classes.

Fact: This statement cannot be generalized, as each child is different. We need to take a decision based on the child and the services available.

Myth: IQ scores obtained when ASD children are aged two and three are valid baselines, that can be used to measure treatment progress.

Fact: IQ is no indicator of future progress. IQ tests measure static intelligence. Whereas treatment progress is measured by how well the child can navigate the dynamic world.

Let’s consider 2 scenarios:

Adult 1: He uses sign language to communicate, can go with the flow and joins his family at outings and family functions.

Adult 2: He has a vocabulary of a thousand words, can do all kinds of math computations, but cannot join his family on outings as he cannot go with the flow and ends up constantly fighting those around him.

It’s quite clear to see who enjoys a better quality of life.

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Myth: School enrollment, as early as possible, is an essential part of the treatment process.

Fact: Building guided participation between parent and child forms the basis of treatment to remediate core deficits of autism. School may or may not be part of this. Many of the families that I work with have home schooled – with great results too.

Myth: More hours per week of intervention are always better

Fact: Quality is better than quantity. What makes more sense to you? 30 minutes spent meaningfully doing an authentic activity or than 2 hours spent in activities that are not really authentic, such as sitting at a table and learning names of items via flashcards.

A solid program, such as RDI, implemented well will help. Today I believe that less is more.

Myth: Any intervention should be tried as nothing can be harmful.

Fact: Any intervention should only be tried after careful examination and understanding. Consultations with experts in the field will help. Yes, there may be interventions that may prove harmful too.

Myth: Most people with Asperger’s Syndrome can have productive lives if they can just get through college

Fact: Unless the core deficits are remediated, even people with Asperger’s Syndrome have problems dealing with successfully navigating day to day life.

So how did you fare on these autism myths and facts?

Here are four things that I want you to keep in mind:

1. Take care of your emotional self. Get over the grief.
2. Understand what autism actually is. Keep in mind the misconceptions about autism – as mentioned above.
3. Find a respectful, empowering program.
4. Now prepare yourself for the Marathon ahead.

Look to build a beautiful connect with your child. You are a sculptor. You have the ability to create a reciprocal, meaningful relationship with your child. Your child is beautiful, whole and complete. Clear the myths that create fogginess in your brain and dampen your mind’s windscreen. Step into the bright sunshine of your life. Encompass your child and entire family with this warmth.

Only you, the parent can do this.

If you have questions about Autism or the Myths mentioned above, please feel free to contact me.

images courtesy: RDI Connect