If only I had a dollar every time I heard this sentence.
My son was diagnosed with Autism when he was five years old. It was such a traumatic time for me. Not because I thought he had Autism, but because of the judgements I received from people when I told them of my son's diagnosis - teachers, friends, acquaintances and even some family. Comments after I told people ranged from, "he doesn't seem autistic", to "he is fine in class" to "it must be how you parent him". What people didn't know is that I was already questioning my own parenting, wondering if it was Autism or my parenting, I thought I was failing as a mother. He was my first born, so of course I had no idea what I was doing, and I didn't always get it right. Now after 13 years since my son was diagnosed, and having learnt so much about my son, me and Autism, I know his diagnosis was 100% correct.
I wish I could go back to those people who made comment (and I still wonder why they thought they had the right to make comment in the first place), and say to them - "come and live with me and then you will understand" or "this is an extremely hard time for our family right now as we are only trying to help our son and your comments are not useful" or even "please learn more about Autism, before making judgement". What I know now is that there is little understanding of Autism, and even less 13 years ago. People did not understand Autism as a spectrum and how everyone on the spectrum is different, nor did they understand the co-conditions that may occur with Autism that can also affects how one may present with Autism.
My son was a typical Autistic child, he did not like change in routine, he was extremely literal, struggled with understanding tone and facial expression during conversations, certainly did not understand sarcasm, he like order and everything to feel and look 'right'. School was difficult for him as it was often noisy, there were change in routines, he had to navigate the social world that he did not understand and there were so many unwritten, social rules that are no taught, yet other people seem to know what they were when he did not. The energy trying to navigate daily life was exhausting. During every day things would unsettle him continually. More often than not he would hold in these feelings until he could no longer and then he would burst - we call this the coke bottle effect, (video below explaining The Coke Bottle effect).
For many Autistic people they try to hold in these overwhelming feelings until they are in a safe place - with loved ones or at home. This was true for my son and every day when we jumped into the car after school he would have a meltdown. If it wasn't in the car it would often be at home, when one or two other things added to the build up of emotions from throughout the day. His teachers, some family and friends wouldn't see these meltdowns that I spoke of, that are typical in atypical children, so they made up their own judgements and thought I was exaggerating or even lying and quite often did not hold back in telling me so. Sometimes I think I am still traumatised from this and I always think in many situations, "you just don't know what happens behind closed doors". I didn't need judgement, I needed support, help and love. I need to add, I did get all of these things from many people at this time, it is unfortunate
"when you are at your lowest
it is the hurtful and judgemental
comments you hear the loudest."
I wish I could go back and tell those people meltdowns are not controlled behaviour - a tantrum is but not a meltdown. A tantrum is typically manipulative, where a child tried to get what they want by crying, screaming or making a scene. Meltdowns are a release of emotions, a part of the stress response - flight, flight, fawn, freeze and a sign of distress or unmet need, which can be shown in a variety of different ways. Some children are aggressive, where as some cry and scream, every child is different. Meltdowns are exhausting, in addition so is holding in unsettled emotions over a long time period. My son often felt shame after a meltdown and would sometimes say to me "I am sorry, I can't control it". Which they can not - not when they are so overwhelmed a meltdown occurs.
Autistic children are already at a higher risk of bullying, so imagine if they had every meltdown on display for other children to see, they would be an even bigger target for bullying. This is why they hold in these build up emotions until they can no longer.
April is Autism Awareness Month so please remember parents of Autistic children are already struggling, we don't need judgement, we need care and understanding. If you don't know much about Autism or think you could know more, please seek to know more as knowledge is power.
