This blog post was originally published on the saiconnections blog page. You can read the original here.
There’s nothing special about two 16 year olds baking a cake together, right? But trust me, this pair is different.
Rohan attends regular school. He comes to volunteer at the center every week. He watches out for Piyush like a hawk!
Right from handing him the flour, to helping him with the sieve and mixing the batter, Rohan supports Piyush. Reading out the recipe, he adjusts the temperature and timing and finally helps Piyush to put the cake tin in the oven.
They exchange meaningful smiles. Mission accomplished!
It warms my heart to see the camaraderie between these two. After all, how often do you see 2 people with autism interacting like this?
Both these young folks have autism. Rohan talks, he reads, he understands everything.
To understand what autism is, we’ve got to first understand what it’s not.
1. Autism is not about speech
It is about communication. There are many people on the autism spectrum who use speech fluently.
Then there are others who are non vocal.
Many non vocal individuals use other forms of communication such as gestures and signs, Picture Exchange, Augmentative communication devices, keyboards, letter boards and so on.
In the story above, Rohan is a fluent speaker. Piyush uses signs and gestures to communicate. At present, he is learning to use the AVAZ communication app on a tablet.
2. Autism is not about behavior
All people on the Spectrum do not engage in sensory stimulatory behaviors, or stimming. Nor do they all display self injurious or aggressive behaviors.
Autism is not about ‘fix the behavior to fix the child.’
3. Autism is not about the kind of school the child attends
Some people on the Spectrum go to regular school. Some go to special schools or learning centers.
Rohan goes to regular school. Piyush, on the other hand, comes to SAI Connections.
4. Autism is not about intelligence
Many people on the autism spectrum have genius-level IQ. Others seem to have Intellectual Disabilities.
I use the word ‘seem’ as it is difficult to measure the intelligence of those who are non vocal.
According to the latest findings, 60% of people on the spectrum have normal to high IQ scores.
5. Autism is not about difficulties with fine or gross motor skills
Some people on the spectrum clearly have difficulties with skills, while others don’t. The skills levels of some people on the spectrum may be just like another neuro typical person.
Aahan rides his bike through the crowded streets of Pune. He’s proficient with cricket. Plus he reads and writes reasonably well too.
That’s a lot of diversity, right?
In addition, they could face other challenges which include learning disabilities, epilepsy, sleep problems, gut issues.
No two people on the Spectrum are exactly alike. Each individual has a unique combination of characteristics and so may seem quite different.
Irrespective of where each one of them is on the Autism Spectrum, they face a few common difficulties.
1. They find it difficult to share experiences
I see this commonly in assessments. They share dates and the names of places they’ve visited, but they find it difficult to share their feelings and experiences.
Or they may identify or name objects or people, but they do not share feelings that they’ve experienced.
2. They find it difficult to understand and borrow different perspectives
People with autism find it difficult to understand another’s perspective. They say or do things, but they don’t understand how this may impact others around them.
One of my students asked a relative how it felt to have a son who was a stay-at-home dad! The old man was clearly uncomfortable, but this youngster failed to take the discomfort and facial expressions into account. He persisted in continuing this conversation.
3. They find it difficult to learn from the past and apply it to the future
You and I use a negative experience as a learning to avoid negative consequences in the future.
But people on the spectrum may have a difficulty with this. A common complaint that I hear from mothers is, “But why doesn’t he listen to me, even when I shout at him so many times?”
Clearly, at this point, they’re not learning from being scolded.
4. They find it difficult to go with the flow
Life is about changes. A plan can change out of the blue.
It is difficult for a person on the spectrum to handle changes. Many times meltdowns may result because of a person not being able to take a sudden change in plans.
5. They find it difficult to understand their role in a dynamic situation
Unless specifically stated or instructed, they may not know how to respond in a situation.
It’s easy for us to observe a situation and figure out what we’re supposed to do – without it being explicitly stated. People on the spectrum mostly need help with this.
The good news is that these core deficits can be remediated and people on the Autism Spectrum can live meaningful, happy lives.
So what do they want to tell you?
Lyrics to this beautiful song are penned by Dr Parasuram Ramamoorthi. The music and arrangement is by Sammy- an individual on the Autism Spectrum
I believe that they challenge us to step out of our boundaries. They urge us to move out of the space of right and wrong into the space of love and acceptance.
Here’s something for you to think about:
What is the autistic state of mind and way of viewing the world represents, not a defect that we must correct, but an evolutionary step up?
What if millions of autistic individuals are here to show us neuro-typicals a different way?
Individuals on the spectrum march to a different band, and dance to a different tune. I believe that they can dance through our world and make it a better place.
The question is – are you willing to make a shift within you?
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)