Why ‘because he is autistic’ Is Not A Good Enough Answer
15 years ago, a gentleman came up to me at an airport.
I still remember the incident vividly.
“Is your son autistic?” He asked.
“Yes.” I answered, as I looked at him questioningly.
“My son was autistic too.” He passed away a few years ago.
I was shocked. “How?” I asked.
We don’t know what happened. He passed in his sleep. He was in his teens.
Nobody could figure out what it was.
I felt intense pain for the gentleman.
And fear. This could happen to anybody.
As I wrote this article, I watched Mohit listening to his favorite music- one melodious song after another.
Over the years, I’ve begun to love the songs he does.
Many of these are from bygone eras. Few are from current Bollywood blockbusters.
Not to mention his favorite Sai Bhajans.
Over the years, his health issues have come to bother me immensely.
Some days, his body balance is worse than ever.
On those days, he looks like he’s going to lose balance and fall over.
That actually happened a couple of times. It broke my heart. But he just picked himself up and laughed aloud!
Unfortunately, every thing is looked at as ‘autism.’
If I bring this up with professionals, some attribute it to him being autistic.
Luckily, not all of them do this. I stick with those few. You might find this list useful too.
When I come across the attitude screaming aloud “but he’s autistic, what can you do?”
I snap back, “No, no. Look carefully. There is something else going on.
It’s not the autism.
Why let this umbrella of autism cloud our judgment and block everything else out?
Mohit has been on anti epileptics for more than 15 years now.
I’ve had many conversations with my medical fraternity friends who agree that enough research has not been done on the long term use of these drugs.
There is a whole population of adults on the spectrum, who have medical issues not related to autism. These are co occurring conditions.
We’ve got to stand up and support autistic individuals.
Here are some co morbid conditions to consider.
• Medical health issues. Children with autism spectrum disorder may also have medical issues, such as epilepsy, sleep disorders, limited food preferences or stomach problems.
These need to be addressed and not pushed under the umbrella of autism.
• Problems with transition to adulthood. Teens and young adults with autism spectrum disorder may have difficulty understanding body changes. Also, social situations become increasingly complex in adolescence, and there may be less tolerance for individual differences. Behavior problems may be challenging during the teen years.
• Other mental health disorders. Teens and adults with autism spectrum disorder often experience other mental health disorders, such as anxiety and depression. These are not an inherent part of the autism. They occur concurrently.
• Motor issues
Gross and fine motor issues may be prevalent. Every autistic individual does not have these issues. They need to be addressed separately and as per the needs of each individual.
Some autistic individuals have a problem with speech. Others don’t. For some articulation is a problem, some are non vocal.
There is a difference between the core deficits and co occuring conditions or co morbidities. We need to differentiate between the two.
This is how Dr Steven Gutstein of RDI Connect (USA) describes the core deficits of autism.
• Failure to initiate Co-Experiencing Engagements (Initiating Joint Attention) for ‘Experience-Seeking’.
• Failure to take advantage of opportunities to develop imaginative and pretend-play through interactions with parents, the route taken by typically-developing infants and toddlers.
• The failure to participate with parents to develop the skills needed to be ready for peer Collaboration – once again the route taken by typically developing infants and toddlers.
• Failure to participate in the hundreds of conversations with parents by which typically developing children develop the foundations of Empathy, Perspective-Taking and Mentalizing – understanding others’ minds.
• Failure to use parents and primary caregivers for Social Referencing, to manage Uncertainty Feelings.
• Restricted development of communicative functions and means.
It’s time to distinguish the two – core deficits and co morbidities.
It’s easier to shove everything under the blanket statement, ‘because he’s autistic.’
It would serve us well to distinguish between the core deficitis and co morbidities.
My wish is that every parent becomes empowered and distinguishes the core deficits from the co morbidities.
It would save us much heart ache.
If you would like to understand the difference and to treat the core deficits effectively, reach out to us at SAI Connections. I’ll be more than happy to guide you to understand your child’s potential.
Kamini Lakhani is the founder and director of SAI Connections. She has been providing services in the field of autism for more than 25 years and is the authorized director of Professional Training for RDI in India and the Middle East. She is also the mother of a young adult with autism.