Part 3: The fallout of SPI in Autism

A new year with new beginnings – this is my hope and prayer for my son Krishna and all other children on the autistic spectrum. Of course,  the adults too.

I’m hoping for 2025 to bring more sensitivity and awareness about Autism Spectrum Disorders.

The last week of 2024 saw us traveling. New experiences for Krishna, new people to meet, new people to dote on him, and strange experiences with esteemed members of the medical fraternity…

I have a story here to tell you. 

But before that, a few more facts. 

Issues that go hand-in-hand with sSensory pProcessing iIssues

Many autistic children face sensory processing issues (SPI). This is often the root cause for other uncomfortable and downright debilitating problems:

Poor sleep / insomnia

Children on the spectrum struggle to fall asleep and stay asleep. This is a simple sentence that I’ve written. But picture this: you and your child have had an exhausting day crammed with work and activities. Both of you would just like to sleep. 

Doctors and therapists have told you all about bedtime routines and sleep hygiene. So you religiously follow both. Early dinner, post-dinner brushing of teeth, switching off all screen and digital devices, dim lights, soothing music or gentle conversation or story time, spending relaxing  time out in the fresh night air…

You then tuck your child in bed and pat or rock them gently. Your own eyes are heavy with sleep and every bone in your body hurts. You know you still have work to finish after your child sleeps, before you wrap up for the night. The darkness soothes, your movements lull…

“Ma!”

Your eyes fly open. Your child is looking up at you, eyes clear and wide open, not a trace of sleep. You switch on your phone and peer blearily at the time. 

1.00 am.

And thus begins the delight of a sleepless night.

Or… Let’s rewind a little. 

You then tuck your child in bed and pat or rock them gently. Your own eyes are heavy with sleep and every bone in your body hurts. You know you still have work to finish after your child sleeps, before you wrap up for the night. The darkness soothes, your movements lull…

Your child’s eyelids droop and close. Their breathing changes, deep and rhythmic. Joy! Sleep has found them! You steal away silently, and summon up manic energy from unknown reserves to finish that pesky backlog of work. After a couple of hours, you steal back to bed. Lie down and stretch. Pure bliss! Your eyes drop shut…

“Ma!”

Your eyes fly open, heart thundering. But your child was asleep… Not anymore. A little figure stands beside you, tugging at your hand. You fumble for your phone and stare at it.

2.00 am.

And thus begins the delight of a sleepless night.

Despite sleep medications, sleep hygiene, and activities to promote sleep, sleep remains elusive or disturbed.

Gut issues like impaired digestion, food sensitivities, and Pica 

Autistic children are often picky eaters. They like only a certain taste, a certain colour, or a certain texture. And sometimes, they crave inedible things like mud, gum, paper, etc. (this is called Pica). And many children take to processed foods with a vengeance. Children on the spectrum are more sensitive to the chemicals and non-nutritional additives in processed foods. Additionally, certain foods make them hyperactive, cause aches and pains, or have odd effects like itching without rashes. Some cause outright allergies.

The result?

Nutritional imbalance and deficiencies. Gut pain. Constipation or diarrhoea. Obesity. Caries. Disturbed sleep. 

My son Krishna detests processed foods. He eats only freshly cooked food with plenty of vegetables. Still, he has severe gut issues, constipation, and caries. This is because his SPI causes him to pick out textures, discard tastes, and start playing with his food instead of eating it. He would mouth anything and everything that caught his interest: twigs, leaves, bits of paper, stones… As to food intolerances, eating chickpeas, for example, makes him hyperactive. He runs up and  down the stairs at least 20 times at a go, jumps non-stop, laughs uncontrollably, and then collapses in tears with sheer exhaustion after hours of this. Drinking milk or eating curd renders him completely sleepless through the night and day.

High pain tolerance 

Many autistic children have dangerously high tolerance to pain. Sometimes, they react differently to pain: I’ve seen children laughing hysterically after painfully scraping their knees, or when they have a tummy ache. It does NOT mean they are happy to feel pain; their expression of it is wildly different.

He coolly ignores cuts and scrapes. Once,  he slipped and fell while playing, deeply cutting his chin. It was an inch long, bleeding heavily. He didn’t care. I was screaming and yelling over the blood and he gave me a look, which seemed to say,  “Ma, what’s the big deal?” 

He was just 5 years old.

And this child screams with gut pain and hits against hard surfaces, trying to distract himself from the internal pain with the self-inflicted one. 

Self-injury and/or aggression

When you’re overloading on a cocktail of distressing stimuli and pain, and have reached breaking point, what would you do? Perhaps scream? Break a plate or two? Curl into a ball and rock? Bang your head on the wall? Lash out at the person who is trying to control you without getting that you’re in extreme distress?

Aha, you’re being aggressive. You’re indulging in self-injurious behavior. 

And this, dear reader, is how the labels arrive.

Some strange opinions on the cause of Autism

So, to tell you the story now…

A couple of days ago, we consulted yet another esteemed member of the medical fraternity for Krishna’s gut issues.

“Doctor,  briefly, this is Krishna’s history: He regressed after about 4 years of normal development. He went from a bright,  inquisitive, very talkative kid to this silent, withdrawn boy of today. “

I explained his gut issues. And listened to this response:

“Why do you say he has regressed when his reports are normal? He has just adapted to his environment differently. When all his needs are met by his environment,  why should he communicate? Why should he act? He has modified his behavior because his environment places no demands on him.

Look, you live in Bangalore, right? And Kannada isn’t your mother-tongue? Suppose you go to a shop and buy some things. You communicate to the shopkeeper by signing, using English, Hindi, broken Kannada. You buy the same things over the next couple of months. By the third month, the shopkeeper is going to see you coming and keep what you usually buy ready for you. You don’t need to talk.

So you stop talking. 

Your husband arranges Kannada classes (speech therapy) for you and forces you to go. Why would you learn? Where is the need for you to learn? 

This is what has happened to Krishna.”

I was literally struck dumb. And that’s without going into all the other biases in this story. There was more along these lines (I haven’t written all of it), very similar to a certain gentleman’s statement about staring at one’s wife on Sundays.

What is a 4-year-old child’s basic environment?

His home. His family. His parents. The doctor told me that Krishna’s autism was mainly my fault, because my husband would have been away from home, working, while I cared for our son.

I now have the maturity and strength of mind to NOT accept that my son stopped communicating, stopped writing,  stopped learning traditionally,  and stopped pooping because I (and, of course, his father) doted on him and anticipated needs.

And I also learned that innumerable parents are still bearing this burden of misplaced guilt, placed on their shoulders by antiquated theories. 

The causes of autism spectrum disorders are still being researched. The speculation is genetics, biology, environmental factors like heavy metals in the water, or birth complications. 

The nature versus nurture argument may still rage. But dear moms and dads, your child isn’t autistic because you pampered them or had a career or quarreled with each other once in a while. 

Your child isn’t autistic because you are human beings with needs and aspirations of your own.

Your child isn’t autistic because you loved them and anticipated their needs.

Just… no.

I’ll share more next week. Till then, I hope this is what you’ll take away:

SPI in Autism sometimes causes sleep disturbances, gut issues and unusual eating habits, nutritional imbalances, high pain tolerance, aggression and/or self-injury. And if the doctor you consult for these issues tells you it’s your fault, please remember. No, it is not.