Advocate for Autism

"He's just a normal child!"

No single phrase has defined my life in more profound ways than this one.

Loaded with criticism, belittlement, trivialisation, dismissal and ignorance.

Fulminated at me by my despotic, overbearing, ultracrepidarian matriarch.

My heartfelt opinion, disparaged again.

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Little did I know at the time, but this remark first made by my mum many years ago after another heated discussion about the youngest member of our family marked a significant moment in my life, and set in motion a cascade of events that would change and grow me in both profound and unexpected ways.

Born in the South East of England in the early 1940's, during World War 2, my mum was raised in a strict home alongside her two siblings. Growing up in post war Britain presented many challenges with rationing and food shortages being a normal part of her daily life as the country struggled to return to some resemblance of normality. Never one to be beaten by circumstances, Mum's tenacity and drive surfaced early as she began to move beyond the harsh rules and regimes imposed on her by her authoritarian father, excelling at school and eventually being offered the highly prestigious position of Personal Assistant to the European Director of a London firm. A high flying socialite and respected career woman, Mum had a world of possibility before her.

Beauty favoured her too, winning her the Miss Herne Bay Beauty Contest in her late teens, but alas, this quality of physical beauty was also to be her snare. After meeting my smooth talking father in her early twenties and falling for his charm, Mum was soon engaged, married and expecting their first child. Not exactly the life she had envisaged.

My father, unlike my mum, had a very different work ethic. On the insistence of my father, Mum returned to work shortly after the birth of my brother, continuing to support her family by bringing home a sizable salary. While Mum worked long hours both in and out of our home, my father spent much of his time dodging work, drinking and gambling. Mum finally resigned from her job after returning home from work early one day - due to being unwell, to find my father on the telephone in the process of gambling their savings away on a horse race.

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From then on, eviction notices on their rented property became part of Mum's new normal. Moving from one damp, run-down apartment to another became a regular occurrence, as the debts escalated and unpaid bills mounted up. A far cry from the refined lifestyle she was accustomed to, Mum struggled on, and eventually had a further three children in her late thirties. Once a young woman full of confidence, possibility and hope, Mum instead endured twenty-eight years of a failing marriage, constantly living in tatty, worn-out clothes and having to furnish our rented home with poor quality second-hand furniture, while bringing up three young children. Any money that did come into the house was frequently wasted by my father on auction lots containing old books and useless junk. Meals organised by my father followed a similar pattern every week, with overcooked, dried-out turkey, boiled potatoes and soggy vegetables appearing frequently on the dinner table. Aggressive verbal arguments between my father and Mum constantly filled our home, only abating for the 9 months my father was incarcerated for benefit fraud.

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Divorcing my father enabled Mum to start taking control of her life again. She started working part-time to support our family, and slowly, slowly her self respect and dignity started to return, but, having lived for so long being controlled by her father and subsequently my father, all too quickly a new sense of control started to overshadow her. The controlled now became the controller, and Mum embarked on an unstoppable quest to gain control of every detail of her life, as well as the lives of those around her. Although the incessant arguments between my parents had finally ceased, the dominance and authority Mum began to exert over me rapidly became unbearable. Arguments between her and I ensued. She pushed forward, I resisted her and pushed back. Shamefully, in an attempt to distance myself from her control I began to rebel against her, spending more and more time in places I should never have been, with people I should never have been with.

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Finally, after many years of failed relationships and the relentless search for someone to accept me, I met my husband. Things at last looked hopeful. It felt like a fresh start and a welcome relief from the pressure I felt at home. I wanted to honour my mum, but I didn't want to be controlled. I wanted to find my own way even if that meant making mistakes along the way.

My husband and I married after a five year relationship, and a little over a year later our first son was born. Times were challenging with my husband, and his refusal to assist with night feeds and certain aspects of caring for our newborn baby started to take its toll on me. Things were still not brilliant with Mum and I continued to often feel the heaviness of her disapproval regarding decisions I made concerning my new family. Being a new mum I began to realise that as much as I greatly appreciated her invaluable help during this time, it was very apparent to me that she still did not regard me as capable of making wise decisions, and we would often strongly disagree.

As my son grew it became very evident to me that something was different about him. The way that he dealt with, or rather couldn't deal with certain situations, and the resulting 'meltdowns' were challenging to handle. The pressure was exacerbated by the lack of support from my husband (due to his own complex needs), as well as my ongoing sleep deprivation. Strangely, even though Mum had raised four children, the anomalies I was noticing in my son's behaviour seemed to go completely unnoticed by her. This compounded the situation as she started to blame me for the struggles I was having with my young son's behaviour indicating that I wasn't responding to him appropriately due to my own dysfunctional state of mind.

Regardless of all she said, I knew in my heart that something else was going on.

As my son grew up and reached an age where he was happy to go for special outings with my mum and my stepfather, the situation between Mum and I deteriorated further.

Due to what I now understand as severe anxiety caused by my son's Autism, putting him into unpredictable, noisy social situations with everchanging sensory stimuli (sights, sounds, smells, and even touch sensations) caused him to almost completely withdraw within himself. In a strange twist of fate, the overwhelming sensory overload that my son experienced every time he was out of our home setting, resulted in strangely compliant, exceptionally 'good' behaviour from him. At this point in time, I did not understand that my son was dealing with the challenges of Autism, and that his withdrawal was his way to protect himself from these impossibly hard-to-understand situations, and to shut out the world. Unfortunately, on returning to his familiar secure home setting, the tension and anxiety he had managed to contain while he was out, would literally explode out of his little body. Angry and violent outbursts, normally directed towards me, were frequent after these outings; and my misunderstanding of the reasons behind them meant that I didn't deal with them as effectively as I could have done. Unfortunately my son's behaviour was also misunderstood by everyone else around him and Mum was quick to criticise my reactions to my son's behaviour, rather than to try and address the reasons behind the outbursts. All-in-all, it was a very ugly time and the tension between Mum and I continued to rise.

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After a particularly explosive argument between Mum and I, and after many desperate hours frantically searching for some answers, I finally stumbled upon a possible explanation for my son's behaviour. I discovered that my son was most likely dealing with the effects of Autism. It was a monumental discovery for me, and I embarked upon a journey of educating myself about every aspect of Autism through books, articles, websites, research papers and videos, as well as completing an intensive course on "Understanding Autism", to learn how I could help my struggling son.

All the while, the outings continued with my parents, the meltdowns continued, and the criticism from Mum continued with her frequently telling me that I was wrong, and my son was "just a normal child". The more she pushed her ill-informed opinion on me, the more I was determined to discover the cause for my son's extreme behaviour. I knew what we were experiencing wasn't "normal" no matter how many times Mum voiced it, and I was intent on finding out more. My journey of becoming my son's advocate had begun.

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The more I committed myself to understanding the condition of Autism, the more I began to understand how I, myself, could positively affect the outcome of a situation by adapting my own behaviour. How I handled a situation and the way I reacted, actually mattered more than how my son behaved. Instead of expecting my son's behaviour to change, I realised that he had no control over the levels of anxiety that each situation caused him. In those awful moments of 'meltdown' he was letting me know that he wasn't coping, and what he needed most was for me to reassure him, remain calm, and gently love him through each release of anxiety and tension, no matter how extreme his behaviour. I also realised that I was the one to receive the 'brunt' of the outpouring of his tension because as his mum and the one who had nursed him from birth, I was the one he trusted most and the one he felt most secure with, to release that tension to.

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Every meltdown brought new insight for me about Autism, and although the criticism continued from Mum and she continued to push her ignorant opinions on me, I continued to push forwards in my research. Slowly, slowly I started to understand more, and to begin to deal with each meltdown a little more effectively.

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Every time I discovered something more about my son's suspected condition, I tried to share it with Mum, but she didn't want to know. She refused to listen to my opinions and convictions, and continued to point the finger-of-blame towards me. This made me even more determined to find ways to help my son.

In late 2017, Mum suddenly passed away from an undetected pulmonary embolism. Four weeks prior to her passing, we had enjoyed a wonderful two week holiday with her, my stepfather and my two sons. I was determined to try and make her understand what I knew to be true by this time, that not only was I convinced that my son was autistic, but that my husband was also. One morning while on holiday I sat her down to talk to her. I was ready for a fight, but for the first time in my life she willingly listened to everything I had to say. Amazingly, not only did she listen but she also ended up agreeing wholeheartedly with what I said. She was ready to hear. It was a very precious moment.

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I knew Mum dearly loved my son, and he clearly loved her; but from that moment on she committed to understanding my son even better, and to help him and support him in ways she had never done before. The change in our relationship was staggering too, and I will be forever grateful for the gift of those four remaining weeks with her where the tension and friction that had existed for so long between us, just disappeared. I was at last able to lay down the defensive shield that I had had to wield for so many years.

Today, as I reflect on Mum's remark about my son just "being a normal child", I realise that it was a significant trigger for me for inner change and self-development. I hated every instant that I argued with Mum and the way that she made me feel as I loved her dearly, but I understood that the way she reacted to me was as a result of her own life-hurts and insecurities. I am deeply grateful to her, as every time she 'knocked me back' it instilled a little more 'fight' in me, and made me more determined than ever to find the reason behind the explosive outbursts from my son, and more importantly, to find ways to help him.

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Every time Mum refused to accept that there was an issue with my son it awakened a deeper realisation in me that the only person who was going to take the time to try and understand my son and become his advocate and his champion, was me. The more I began to understand his condition, the more I realised how much ongoing support he needs to navigate his way through the world. Every belittlement, criticism, and dismissal from Mum regarding my son - although hugely painful at the time - fuelled my determination to prove that my heartfelt convictions were valid, and that my beautiful son was in fact wonderfully neurodiverse and not just 'normal'. Treating him as normal actually doesn't help him in any way. Expecting him to behave 'normally' is an unrealistic expectation that he is unable to meet. Understanding his struggles and supporting him through them is the most significant and important thing I can do for him. Fighting for him when no one else will, is my honour. I wonder if I would have come to this point of understanding my son's condition without Mum's involvement? My sense is that her input, however negative and seemingly unhelpful at the time, was just the catalyst I needed in learning to become who I needed to become, and who ultimately she would be proud of me for becoming.