This year, I acknowledge Autism Awareness Month for the first time as a diagnosed Autistic person, not only as a mother of an Autistic son.
In 2007, my son Valentino was diagnosed as Autistic. Unfortunately, at the start, the exploration of his diagnosis came from misguided information by the health service, which led me down some negative paths.
Valentino’s mutism, I was told, would be probably permanent, and I was advised to get him picture cards so that he could show me a picture of a toilet if he needed to go the bathroom or some food if he was hungry.
I am strong-willed and my instinct was to challenge this tool and to encourage his communication skills instead. Why would he even try to speak if he can just point at pictures? It did not seem logical to me. So I went with my instinct and today my son has excellent use of language, and I love how he forms his sentences. At 18 years old, he is wise and speaks when he has something he considers essential to say. I admire him so much.
However, as he was growing up, his ‘meltdowns’ were physically and mentally draining, and the judgements from others were brutal. Public meltdowns were hard, as people assumed that he was naughty and that I had somehow spoilt him. That I was a bad mother. These moments leave scars, and even in this writing, I am recognising I have not processed these traumas fully, and I must.
My Valentino is an empathetic individual. People cannot grasp that it has nothing to do with intellect or lack of it, but ultimately how Valentino responds to a world that is not structured to accommodate his sensitivities and how he thinks and perceives things to be.
I spoke with many therapists privately and in the NHS during this period. In both realms, Autism was observed and considered a deficiency and, as no surprise, a disorder, as it is named. The approach centred around the concept that it was a syndrome that needed to be diluted or eradicated and contorted to fit society as we know it.
I was exploring options on offer to find out about it, but ultimately, even during all the tests he went through, I had to pull the plug on most things and go with my gut instincts.
I realised I did not want to change him, not that it was even possible. So I stopped trying to find a solution and learned who my son was and what he needed to help him be himself without judgement or concern.
Over a decade later, my diagnosis has brought me closer to Valentino in ways I could not have predicted.
Tapping into my instincts, not just the maternal variety, brought great insight. Away from health professionals, my understanding of who Valentino is came from my relationship with him, through living with and observing him.
It has been a considerable journey to accept his needs over my ego. The ego dictates the feelings of loss about how I imagined my family life to be. However, the mourning process for that would-be life must be observed, and one must not feel bad for these feelings. You are allowed them; they are yours, and in my experience, it did not mean I loved him less, but the profundity of my love grew. It helped pave the way for a more meaningful relationship with him and a spiritual level to understand why he was born of me. He showed me the light; he saved me.
I am looking at what my diagnosis means to me and how much I have masked my natural behaviour, giving me a deeper understanding of his.
I am trying to forgive myself for hearing all the information but not processing it correctly. Still, I was doing my best at any given time, and if I wasn’t, it was because I abandoned myself many times.
I am a highly sensitive human being, but I have been masking it for so long that I had forgotten what I was underneath it all. I have heavily judged and criticised myself, and I have scratched my head about why I feel so profoundly moved and feel great pain and joy. As a result, I have been vulnerable to abusers and fraudsters, and my fame has attracted many a vampire.
Feelings I have always blamed myself for are breaking down, and my self-esteem emerges. Self-esteem has been distinctly lacking in my life. Having not been instilled in me as a child, it has been elusive until now. However, my diagnosis is healing me in fundamental ways. The fabric of my being is being unravelled and knitted back together in a just and authentic fashion.
Valentino’s diagnosis was the start of a long road to recovery. He gave me the reason to thoroughly look after myself so that I could help both my sons in a much more profound way. But it was only the beginning.
The choices I have made have not always been in alignment with that. But, I was an Autistic woman unbeknownst to me, so I was doing my best with the tools and understanding I had.
My Autism diagnosis has been a vast unlocking of compassion for myself and how I think. I now understand my pursuit of the truth and the absolute bewilderment I have felt at people’s behaviour towards me and their own lives, whether in a professional setting or a private domain.
I am now developing healthy boundaries; whilst my heart is as open as ever, I am more protective of myself and my feelings.
We are all individuals, and Autism manifests in innumerable different ways. However, at the core of us is exquisite sensitivity. My desire for peace, calm, and a mellow space is something I will guard with my life and from which I refuse to be torn. I find myself in a strong position, and it is the rest of my life’s work to find it for others.
Autistic people bring a beautiful truth, an ability to see things in ways that challenge the fixed framework we are all bullied into from birth – from schools to the medical system and beyond.
Most neurotypical people adopt these without question, but neurodivergent people see the injustice and feel it in profound and physical ways. We must learn to understand this and accept these people in all spheres of society.
I will no longer bend and contort to fit into a Neurotypical landscape. However, I will elicit change, a change for myself and my neurodivergent fellow men, women and children who are underestimated, abused, and disregarded.
Those days are numbered, and my life going forward will be the battle for the rights of women and autistic people who are not allowed to be themselves. To help them be seen and heard. To help them nurture their talents and interests on their terms.
Furthermore, I will do everything to help the late-diagnosed women and the journey that sets them on – the realisations, the acceptance of pain endured and the mammoth task of undoing our ‘masking’, the ‘masking’ that is a cover for the struggling Autistic mind.
The community has a massive problem with the word ‘Awareness’ concerning this month. We feel ‘Autism Acceptance’ is more fitting and accepting our existence as an indispensable part of society.
I will endlessly talk about this and my need to help and heal not only the Autistic individual but the Autistic movement at large. We are here, and we are important, and we are proud.