This guest blog post was written by RDI consultant Kamini Lakhani, you can read the original post here.
A month ago, there was an outrage about a 10 year-old boy who was put in this large ‘cage like structure’ in a classroom in Australia. It was agonizing to hear about how people on the Autism Spectrum are treated. I was livid! The image of this cage with a 10 year-old child inside it kept running in my head that night. My restlessness rubbed off on Anil. He had a sleepless night too, for no fault of his own. He never complains though… God bless his soul. As I tossed and turned that night, another question crept up.
Aren’t we ‘jailing’ people on the autism spectrum in more ways than one?
“Strength does not come from winning. Your struggles develop your strengths. When you go through hardships and decide not to surrender, that is strength.” – Arnold Schwarzenegger
People on the Spectrum are:
1. Jailed by our skewed perceptions
One of my students was admitted to a renowned hospital for a Video EEG. When the staff filled out his papers, they put down his diagnosis as MR (Mental Retardation). The mother was furious but she chose not to bring it up because there were more pressing issues to be addressed.
Do you know what’s ironic? This student has a reported IQ of 120.
How many attempts did the nurses make to try and comfort the child, or even speak to him? ZERO!
How does this make you feel?
The feeling out there is that ‘they don’t understand’. And this feeling permeates our environment.
Most shopkeepers address us parents instead of the child when the child is asking for something. Teachers and house help doing the same is not uncommon.
I’ve been in painful situations in group discussions between professionals and parents, where everybody talks in front of the child as if he does not exist. Loaded words such as ‘problematic’ and ‘violent’ are thrown around in the presence of a child who seemingly ‘does not understand’. We couldn’t be more wrong.
Discussion between parents about the child, take place within earshot of the child. Think about what this does to the child, for God’s sake!
While we say that our children ‘understand everything’, our body language and actions speak the opposite.
Related: Why Are Autism Labels SO Damaging?
2. Jailed by their behaviors
They say people on the spectrum display odd movements. They say that these people engage in inappropriate behaviors. And then they justify their own outrageous behavior towards affected individuals with this flimsy excuse.
Years ago, I attended a bhajan session. Mohit had a few stereotypic behaviors, one of which was a hand stim in which he engaged frequently.
A lady was watching him like a hawk. Suddenly she asked me, “what is he doing?”
“I don’t know,” I said.
Until recently, I wondered why this seemingly unimportant event was etched in my memory.
Then I found the answer.
Many children on the Spectrum display such behaviors. Sometimes these seemingly odd behaviors embarrass us and we don’t know what to make of them. Then we categorize our kids and put them in these boxes. We even go ahead and put labels on these boxes.
3. Jailed by their restriction in communication
One day, one of my students wanted to leave the center early. He kept running to the door with his bag. 2 helpers had to be stationed at the door so that he couldn’t run away. He tried everything. He pushed, he pulled and he screamed. It took me 20 minutes to use regulating strategies to calm him down.
Later that day, his mother informed me that he had been given a relaxant the previous night as he could not sleep. The medication kicked in only at 6 am. He was up at his regular time and was sent to the center. Was he trying to tell us that he was tired and needed to sleep? Did he have a headache? We don’t know because he is non vocal.
We have a dilemma here. If a person cannot communicate using words, how do we understand what he or she is trying to say?
The same applies to people with limited vocabulary. They can express their needs but do they converse beyond that?
Even if there is a fully developed vocabulary, can the child share emotionally with us?
They are trapped, yet again, not just by their inability to communicate effectively, but by our stubbornness to not want to understand them. We must start listening to them to help them develop social and other skills.
How can we release these wonderful people from the cages that they don’t deserve to be in? What can you do to be a part of this revolution?
1. Educate yourself
Get to know what autism really is. There is a wealth of information on the internet today. I find net-savvy parents downloading information from a number of sources. However, all this information needs to be carefully analyzed before you make a decision (yes, even what I share with you).
Understanding the core deficits of autism and co-occurring conditions will help you sift through the tons of information available at your finger tips.
No two children on the spectrum are exactly alike. Undergoing a parent training program will greatly enhance your knowledge about autism.
2. Know that your child understands everything
Be present when you talk to your child. Give him time to respond. Don’t be in a hurry for an answer.
When Mohit was growing up, there was little information about autism. There were a handful of firsthand accounts from people on the Spectrum. Today, several people on the spectrum have published books and articles to lucidly explain how they have overcome obstacles and emerged from their limitations.
Read them. You will be convinced that your child knows much more than you give him credit for.
A few months ago, Action for Autism had conducted a workshop, where prominent people on the Spectrum were presenters. These workshops are eye openers for parents and professionals alike.
3. Behaviors are tip of the iceberg
- Dive deeper to understand what is going on.
- Figure out the reason for the behavior.
- Most behaviors build up before the child snaps or ends up having a meltdown.
- Read the signs and help the child regulate.
- I will be happy to help you with this aspect.
4. Communication (not speech) is the key
If you have a young child who is non vocal, look out for the following clues.
a. Does he babble?
b. Does he point to objects he wants?
c. Does he take your hand and guide you to objects that he wants?
d. Does he bring pictures of things that he wants?
e. What are his fine motor abilities like?
Observe these and share them with an experienced specialist who will help you decide which form of communication your child needs: Sign language, PECS, Communication boards, other forms of Augmentative and Assisted Communication or then words? These will help your child develop social skills also.
If you have an older child who is non vocal, then what forms of communication have your tried?
A young adult on the autism spectrum lets his parents know which exotic restaurant he wants to eat at by bringing pictures to them. He saves these pictures from newspapers and magazines and produces them when he wants to convey his preferences. How amazing! We’ve been told that he is an ideal candidate for an AAC device, which he can carry with him and communicate his thoughts.
5. Work with experts
It is important to do your homework and then look for expert guidance also. Specialists can provide you with the knowledge and training that is required as per your family requirements.
I seek expert advice even now. I have worked with Mohit for the past 20+ years. But even today, when I’m stuck with something, it’s the consultants who help me look at the situation from different angles. After all, how can I be objective about my own son?
I will soon put down a list of the best specialists in India to treat autism.
23 years ago, I came across this beautiful, young mother walking down the stairs with her little boy. This boy was differently abled and he had splints on his legs.
The mother looked genuinely happy and had a loving, kind smile on her face.
As I watched, I asked myself, “how can she be so happy, in spite of having a child who has so many difficulties?”
At this time, Mohit was in the process of getting diagnosed. I was in the throes of agony.
“If anything happens to my son, I will never be able to smile like this.”
I think I gave up on life. But life never gave up on me.
It taught me the biggest lessons. It taught me how to overcome obstacles.
It taught me about Mohit’s beauty and our strength.
My aim was to free him from the shackles of autism.
Little did I realize that in the process of ‘unshackling him,’ I would free myself too.
Life didn’t give up on me, and it won’t give up on you either. Trust me.
Kamini Lakhani is a, RDI program consultant and the Director of SAI School (ABA Center) and SAI Connections (RDI Center). She has over 19 years of experience working with individuals with Autism Spectrum Disorders and currently serves as the director of our RDI Professional Training Center in Mumbai. She is the Director of SAI School (ABA Center) and SAI Connections (RDI Center)