How a mother understood what her child was going through and found the tools to help him thrive.
Often a misunderstood spectrum disorder, spotting the signs that your child might have autism can be tricky. Described by the Autism Society as having an impact on a person’s social skills, communication, relationships and self-regulation, this mum-of-one talks about the family’s journey of discovery with their son and how they’ve grown together.
Spotting The Signs
Autism immediately brings to mind a hand-flapping, rocking child lost in his own world with a minimal awkward social interaction. It was so under-researched until just a couple of decades ago that even after doing two post-graduate degrees in psychology, I had very little understanding of it. So, when my son presented his symptoms, we missed it since he seemed just fine going to pre-K and enjoying his playdates (with just a couple of kids at a time). Neither did we catch his high-functioning autism when he presented a sleep disorder, he lined up his toys, had rather poor motor coordination and fussed about eating (in fact, the veggies were consumed only in the form of soup all the way until he was 11). His meltdowns were always mistaken as tantrums from being sleep deprived.
He was a little professor from the age of three and would obsess over a topic and go deep into learning everything he could about it. He had figured multiplication by the age of three and mastered reading by the age of four. In fact, he finished reading all the Harry Potter books by the age of seven! So, even after two days of extensive psychological testing that he was put through at the age of five for not making adequate eye contact and a sleep disorder, the team at the renowned John Hopkins Institute could not come up with a diagnosis! To this day, I get told innumerable times by many people that we should not unnecessarily “label” him. To some, I take the effort to further educate why we need the diagnosis. I just make a mental note of the others as the ones who are going to need a lot of working on – because I have taken it upon myself to be a crusader for autism advocacy.
Getting A Diagnosis
We could finally ascertain Arnav’s diagnosis (at the age of eight years) when I could establish the pattern of him not being able to sustain in any group dynamics with other children. He would just drift away or find himself just one other child who would be interested in the narrow range of topics that he could sustain his interest in, hold a conversation about and create a game around it. Then he could play on for hours with that child…his record being a cool eight hours!
I have been blessed with an extremely supportive family who love Arnav unconditionally and hence it wasn’t difficult for most to accept his diagnosis. One member of my family though believed that it was bad parenting and simply the “single child syndrome”, which I have heard from a few others as well!
In all fairness, I can’t blame people for feeling the way they do about my son being called autistic because most of his “disabilities” are invisible. One can’t tell that the poor kid is having problems processing conversations in group situations and when there is cross-talk. They don’t realise that he is getting overwhelmed by a noisy environment, the sights and smells of many of the regular foods we consume, by bright lights, too much movement and the list goes on. In fact, even after he was diagnosed, neither did we! We only became fully aware of his sensitivity to the very obvious three senses of taste, smell and texture when he was 11, three years after he was finally diagnosed.
Since we are not a socially very active family and lead a rather quiet home life, Arnav seemed to be doing well despite his diagnosis except for his sleep disorder and fuss over the food, which was accepted by all of us as something that was because of his autism. He was doing exceptionally well in academics and had settled well in his school with two friends to his credit. The school he attended was a highly structured school and that worked perfectly well for someone who thrives on structure with low sensory stimuli. We thought we had got away with a borderline diagnosis and I didn’t bother to research more into autism – and I still can’t stop being upset with myself for this!
Read more: How To Reduce The Mental Load On Mamas
Choosing The Right School
But life has its ways and we decided to change his school after the fifth grade. We chose one which was more real-life, child-oriented, a highly organic and less structured, inclusive school. Though it was the right decision (I’ll explain why later), at that time, all hell broke loose in our lives! An otherwise happy child was now a mostly angry child who hated his new school. He pleaded to return to the other school (which was an “academics only” kind of place). He wrote poems to express his dislike for everything in the new school, he wrote letters and met up with the principal asking her to withdraw his admission. His behaviour was extremely difficult to manage in the classroom and at home, often indulging in self-harm or getting violent. We knew he would take time to accept and get used to the change, but our problems only kept escalating and nothing we did in the form of offering and putting into place solutions to help him overcome all the issues he had about the new school, helped.
My life had become miserable not just as a mother, but also because I had joined this school as their school counsellor. All my life as Arnav’s mum, I had a lot of friends telling me that all my problems with him arose because I was being too bookish about parenting….now I seriously started doubting myself as both a mother and a professional because I kept thinking my credibility as a psychologist was at stake if I couldn’t handle my own child! There would be other children coming to me all the time with complaints of Arnav’s “inappropriate” behaviour. At that time, I was also acting as a single parent four days a week since my husband was working in another city and would be back home only on Thursday evening. I would be constantly preoccupied with what he might be up to while he was in school. He had tried running away a few times and my anxiety levels were now perceptible to people interacting with me. Arnav’s condition continued to worsen and he even started suicidal ideation. The thought of my 11-year-old being so miserable was enough for me to be convinced to homeschool him. That’s when the school counsellor of his section advised us to see a psychiatrist.
Delving Deeper In To Autism Understanding
That was when I realised that autism is still not completely understood by most professionals and I wasn’t the only ignorant one in the field! As is known and to be expected of some psychiatrists, Arnav was prescribed with antipsychotic pills. We very reluctantly started him on these after researching the side effects. Unfortunately though, we still weren’t getting his real problems and hence weren’t addressing them.
We hit an all-time low after he started taking the meds and one day during his vacation (which is usually the worst time due to endless days of more or less complete social isolation), Arnav got extremely violent. The psychiatrist asked me to call the police to threaten him to behave himself. He said if that didn’t work, I should have them take him to the psychiatric ward of the government general hospital where they could give him a sedative shot and most importantly to keep myself away from him….all this for my 11-year-old! He even advised us not to tell people that Arnav was autistic to avoid labelling! Needless to say, that was the last time we had anything to do with him.
It’s sometimes true that when you hit rock bottom, the only way from there is up. That’s exactly where we had reached, so we started knocking on other doors. The same school counsellor who had tremendous faith in Arnav’s capacity to work on himself researched and found us a therapist who had specialised in working with autistic children. For the first time, we understood what autism was all about. The therapist explained sensory perception disorder to us in a way that previous therapists hadn’t and guided us to an occupational therapist who could help Arnav.
The therapist explained that Arnav probably was always on the edge due to sensory overload in the new school. That’s why even the slightest triggers were tipping him over into a meltdown (not a tantrum as had been interpreted). She put a few coping mechanisms in place for him to manage at school and directed us to an occupational therapist (OT) who worked with older kids. The therapist and OT worked miracles in our lives and so did the new class teacher in the seventh grade. The school, being inclusive, helped put the strategies in place for Arnav to start out afresh. We proactively created awareness among all the school children about autism and sensory perception. My son began to blossom and achieve new heights in not just academics but also in other fields. He was finally growing into a confident, happy boy.
Learning Strategies As A Parent
I had always explained his diagnosis to him as a social disability. Being intellectually bright helped him understand his issues and then logically internalise the strategies he had come up with (with the help of his therapists) to deal with the problem areas. He actually started becoming a loved member of his class and popular in school as “that child with his own identity” – he was known to be Sheldon from The Big Bang Theory!
But Arnav’s low in the sixth grade had taken a toll on me. I had become overly anxious trying to pre-empt all that could go wrong and either work on avoiding it or prepare him to deal with it. The endless complaints had sent me on a guilt trip. It made me defensive and protective about Arnav in the world. I had become fearful of that one instance that might trigger something in him and be a setback! The therapist sensed this and realised that Arnav and I were becoming fused with each other. He seemed to depend on me for everything and she needed him to figure out life’s grey areas by himself. His processing of social behaviour was too black and white, while life for most of us on a daily basis is more in the grey zone. Arnav needed to be able to independently work on figuring out how to constructively deal with such situations as we still continued to have a few bad days although those were now fewer.
The therapist suggested I take a complete break and independently work on my anxieties. I sunk myself into researching and understanding autism. I attended workshops and joined support groups with individuals on the spectrum. There was so much to learn! When we say autism is a neurobiological disorder, what actually happens is that there is a burst of neural activity. This makes the perception of each stimulus more exaggerated and stronger. Hence group conversations, cross talk or jumping topics makes it difficult for these individuals to process them. Also, this is why they experience sensory stimuli stronger. My son can hear me even if I whisper something 15 to 20 feet away! We have become sensitive to this and work on it.
It’s about finding strategies to help with the day-to-day. For example, Arnav has an oral sensitivity and he was chewing on all sorts of things while at school. It was grossing his classmates and also posed a health problem. He chews on gum the whole time that he is out of school and that usually works. Our jargon associated with autism has also changed; we use neurotypical and neuro-atypical, meltdown and tantrum, etc. Sensory perception has a whole new meaning in our lives and we’re actively working on getting others to understand it. While ordering food at a restaurant, we explain the sensory issues and request for modifications in a dish.
Into The Future
With each new stage in life, new challenges present themselves. Arnav is now 17 years old and getting set for university. We’ve started realising how deficient he is in his Executive Organisation skills, something most of us just grow into. He finds it difficult to organise his schedule, work his way around in a new setting, figure out notices put up, network with classmates for assignments, etc. College life will be like an ocean and the task ahead is to prepare him to be able to swim through the high and low currents.
Confusion and lack of structure still throw him off. He still can’t just hang out with friends and he gets extremely lonely, and even depressed, during long periods of social isolation such as during vacations. Normal school days suffice for his social needs. His being a high performer makes it difficult for people to see through his challenges and to understand just how much effort he has to put in to just be out there on any regular day. We, as parents see it and have to constantly be his strongest support, helping him deal with his loneliness, process social information and handle insecurities.
It breaks my heart when he says he wishes he could enjoy the same camaraderie that the other kids do, that he could understand all the nuances in their behaviour and be invited to parties and be able to have fun. He still has to practice conversations if he is going to meet someone for the first time. The list goes on. So when people suggest that I stop thinking of my child as autistic, little do they understand what goes on behind the scenes.
I can’t help but remain his ready shield for the world. Together, we fight many battles. So my mantra remains, do what you think is best for your child! As a family, we feel blessed to have had met amazing people and to have been able to seek such a strong supportive group of individuals genuinely wanting to help us, guide us and accept us. I now work with parents of children on the autism spectrum. I help them understand autism better, to accept their child with the diagnosis and to actively not just seek therapy but to work on it. I would like to help them get comfortable with the lifestyle changes it will demand from them and to not feel guilty, embarrassed or apologetic about their child and, most importantly, to be able to explain autism to the world!