Trigger Warning: suicide
Accepted submission (amended) to the Parliamentary Autism Inquiry.
Terms of Reference d) ‘Evidence of the social and economic cost of failing to provide adequate services’.
“I want to kill myself” – My child, 6 years old, crying, pleading not to go to school.
I shared My child’s distress with their teacher and their response? “I wouldn’t take that too seriously – my child says it too.” Many unanswered questions here but not the time or place.
But let’s go back.
My child had enjoyed a blissful, happy, robust and inquisitive early childhood. They were engaged. My child had had a great preschool experience. Their attendance during their preschool year was 100%.
By Grade 2 ... their attendance was nothing, zero, none.
The alternative preschool had identified some learning difficulties and my child was assessed for learning difficulties. In hindsight, this report was largely unhelpful and could have been so much more useful. However, the process of assessment did allow us to recognise that school would be difficult for them. As a result, we were encouraged to keep my child at the preschool for another year. By contrast, the primary school where my child was enrolled felt they were ready to start school. As a consequence, and because of these conflicting views, my child’s transition to school was different to most. My child’s preschool teacher suggested to us that my child might benefit from a long and steady transition to school. My child attended and enrolled school on average, once a week, for Terms Three and Four while still at preschool. Over the course of this transition, my child’s preschool teacher advised me that she thought they were ready for school and we continued the transition program that we had developed.
During the last school transition session, I was in conversation with the principal and teachers about my concern regarding my child’s sensitive nature.
I had witnessed a teacher yell at the children and in essence, I knew that my child would find such outbursts distressing. My child is acutely sensitive to loud noises and does not know how to respond. My child finds it difficult to read social cues and understand inferences, all autism traits, although unbeknown to me at the time. I was seeking reassurance that my child would not be subjected to an environment that I innately understood would be difficult for them. I was reassured that it was a one off incident. This was a very difficult conversation to have and there was tension in the room. Just as this was unfolding, my child returned. They had been directed, along with the other transition children, to join the Prep classroom and was nervous.
My child asked me to come with them.
Knowing my child as I do, my initial reaction was to assure them with calm voice and compassion: “Soon, I’ll just finish my conversation first. I’ll be there soon.” My child immediately became agitated. I continued to reassure my child with soft compassionate tones that everything was okay. I reminded them that they’d already been to the classroom without me. But nothing I said allayed their anxieties or helped them feel safer. My child started yelling and screaming, pulling my body to go with them to the classroom.
My child WAS HAVING A MELT DOWN, but I had never seen this before.
I had always been able to avert the situations that might have lead to a meltdown because I myself understood what it meant to be overwhelmed by the NT world. Unknowingly, and more by luck than design, I had created a life for them that actually prevented them from commonly experiencing meltdown. But I didn’t know that because my own (then undiagnosed) autism had always informed my parenting. I knew that clothing tags are uncomfortable (I had always cut my own tags off) so I cut off my child’s tags. I knew that change was difficult for my child because change had always been difficult for me. I knew that my child would have a lot of anxiety at school because I felt anxiety at school. I made sure all fabrics were soft and not tight, encouraged rocking knowing how soothing I found repetitive physical action to be. I knew my child was super sensitive that they needed a very gentle, compassionate, flexible, nurturing and non judgemental teacher, someone “low triggering”, because I had needed these things to feel okay and safe to ask and re–ask questions. I knew that processing directions would be hard for them because I found that so hard at school. None of these behaviours came as any shock to me .. they were completely within the realms of my expectations and experiences.
I didn’t know that I myself was ‘on the spectrum’ so I didn’t anticipate anything unusual or traumatic.
But my parenting style had largely buffered my child from many of the overwhelming elements of a neuro-typical world, without even realising it. My child’s entrance to school was the first time they were really exposed to the NT world, because we had been living in a world that had been shaped by managing our ASD traits BUT I DIDN’T KNOW. Of course in hindsight, and with so much knowledge now on board, school was always going to be tricky because of our invisible needs. My own autism had me parenting my autistic child in a way that would best support them … BUT I DIDN’T KNOW I WAS PARENTING AN ASD CHILD. I invested heavily in doing what I could to best support them at their soon-to-be-school. I volunteered to paint murals, and develop the school vegetable garden - all before my child even started!
Back to the staffroom on the transition day.
Nothing was working and I knew that my child needed me to go with them. So I walked with them to join the other children. As we arrived, the group were receiving verbal instructions for a musical game. My child remained uncertain. They did not join the group, instead staying by my side. In time they slowly joined the activity. We stayed until the session finished, around twenty minutes and we left to go home. I knew that something wasn’t right, but I couldn’t work out what it was. I recognised that they were losing their confidence and self-esteem. I realise now that the verbal directions were incredibly difficult for them to process and caused rising anxiety, fear and disconnection.
A few days later, after having witnessed my child's meltdown, the principal called me to say that she did not believe my child was ready for school. Following an emotional discussion in which I was crying on the phone, the only plan offered was to enrol my child for the first week of Term 1 “on trial”. I did not believe that this was a feasible solution for my child’s well being or emotional health. In the same week, my child’s kinder teacher advised me that she thought they WERE ready for school! My two educational professionals were in conflict again … but this time each holding the opposite view from before! And they had both changed their mind in the same week.
The week before Christmas!
I was chronically ill at the time with Fibromyalgia and knew my child’s social and educational needs were outgrowing what I was capable of giving them. I decided they were to start primary school.
I enrolled my child at another primary school. In the week before school started. I relayed our experiences so far. The new school did not indicate they identified any difficulties or saw any problems. I was made to feel ill-prepared and demanding, however my child started school.
But ‘stuff’ quickly started unravelling for my child.
For the first time ever, they started experiencing separation anxiety each morning when I tried to leave the classroom. I thought this was ‘normal’ behaviour for a child starting school and they would grow out of it once they became familiar with the school environment. I was wrong. Their attendance immediately dropped. They became a school refuser. I couldn’t get them to school. If by some stroke of management and luck, I DID get them in the car, we would sit in the carpark for hours. I felt the teachers viewed me as the problem. That I was represented as an overprotective mother who was contributing to school refusal. The staff repeatedly maintained that my child presented no problems at school.
I knew something wasn’t right.
This continued for almost three years. My concerns were not shared by my child’s teacher/s and/or the school’s leadership team. I knew that something was not right, but I didn’t know what it was.
My child was assessed by a psychologist. We received the report stating: “(my child) does meet the criteria for diagnosis for Autism Spectrum (Disorder).”
My child’s diagnosis came six weeks after their seventh birthday, so disqualifying them from receiving the financial and educational funding support currently available to children before they turn 7.
During the previous five years, I had been delivering a young women’s program (a project I had been developing and designed for 17 years) at a local youth agency. The program’s aims were to provide opportunities linking and increasing participants’ engagement to education and employment, mental health and other medical services, counselling, community events and organisations, peer support and volunteer work, leisure and recreational activities. 86% of participants disclosed family violence, sexual assault, self harm, addiction, eating disorders and being victims of bullying. The program attracted and successfully supported many young women on the Autism Spectrum. It was during this time, in combination with my child’s difficulties at school, and ongoing conversations with my ASD friend, that I began to learn about ASD. I started researching and reading, quickly recognising that I myself had slipped through the system as a child. I began to question if my child was on the spectrum having listened to a friend whose four children (and herself) were on the spectrum. She had been pointing out my child’s ‘spectrum’ characteristics over the years, since they was two. Unfortunately I didn’t take her thoughts seriously.
This began to explain some of the things that I had never understood about myself and My child’s school experiences.
My work had attracted the support of an international entrepreneur who offered to mentor me and assist in rolling out the program nationally. However, my child’s increasingly debilitating anxiety and panic attacks before, during and after school, were escalating. Despite the efforts of my child’s psychologist and paediatrician to request additional support for my child at school (in the shape of an educational aide at school) the school refused.
In desperation, we directly approached the Education Department to seek support. The department’s representative didn’t support the recommendations for an aide. Instead I was told I should continue our regular meetings with the school and work with what they had to offer. They continued to refuse this vital support and my child continued to suffer enormously.
I wanted to fight for my child’s right for assistance but all my energies were invested in getting them to school, managing their meltdowns, multiple medical and well-being appointments, looking after them for the days they refused going to school or staying at school with them so school might be safer for them.
All the while, I was desperately trying to keep my business running.
A few months later our family broke down. Although separated, my child’s other parent and I continued to live under the same roof. We both saw this as essential to the impossible pressure of trying to protect our child from more stress from their already delicate situation.
Both Centrelink and Family Tax bungled applications. I didn’t receive any finance for nine months. By necessity I had no choice but to financially depend upon my ex–partner. They continued to work up to 100 hours a week to enable us to afford to pay for our child’s interventions (multiple and ongoing medical and specialists appointments and assessments, intervention programs and materials). The other parent was physically and emotionally unavailable to themselves, my child or me. My child continued to refuse school and their anxiety was beyond belief. The school offered little effective support.
Our lives were spiralling into an abyss.
As my child’s behaviour continued to become more difficult around others, I began to become socially isolated. My friendships had failed me as they were unable to cope with my child’s behaviours. My child’s other parent was unable to provide any of the support we needed. My stress levels were peaking. At this point, the only emotional support I had was from my parent. Recently diagnosed with a life threatening, she was experiencing stress of their own. To compound matters, an incident of violence by a family member against my child and I forced us both to leave the state for a week for our safety. My parent was unable to accept my determination to sever ties with the violent family member. My parent and I became estranged.
I became suicidal.
By the end of the year my child was experiencing daily meltdowns; yelling, swearing, crying, hyperventilating all day long. It was no longer possible to push through this, under the guise of ‘education’. This was damaging us both. The school was unable to meet any of the recommendations put forward by the paediatrician and psychologist - namely that my child be able to have a break each hour outside the classroom and away from other children. These recommendations were aimed at counteracting the overstimulation on their sensory system and cognitive exhaustion of the classroom environment and challenging social interactions, learning difficulties and central auditory processing disorder.
I painfully decided to remove my child from mainstream education.
Something I never thought I’d ever do. I decided to home-school. This was in fact impossible. My efforts to start home schooling did not factor in my child’s inability to cope with everyday life. They had meltdowns that lasted all day. My child would scream, yell, swear, experience panics attacks, sleep disturbances, nightmares. They plummeted into even more distressing behaviours that I didn’t understand. All the while I was finding it more and more difficult to support them. I didn’t know that we were both traumatised. My other parent, who has lived with us since before my child was born, started leaving the house every day in order to cope with my child’s meltdowns. This continues even now.
Our relationship is severely wounded as is theirs and my child’s.
In desperation, I met with Denise at the Disability Support Centre. This was a saving grace. We borrowed some learning materials and toys for my child. She suggested to take six months off before starting any education believing we needed time to heal. How right she was. We were not able to see my child’s psychologist for four months (on the emergency waiting list) for support or direction. When we did finally see my child’s psychologist, she confirmed my thoughts that mainstream schooling had damaged our beautiful child. She diagnosed my child and me with Post Traumatic Stress Disorder acquired due to our experiences within the mainstream schooling system.
She insisted that home-schooling become the lowest priority, instead focussing on RECOVERY.
Our goals to home-school were put aside in exchange for recovery. I became my child’s full-time carer to begin healing from PTSD. My child can’t learn until they are healthy. My child needs a calm, loving, non-threatening life to regain resilience.
It’s been six months and we are still recovering from the two and a half years of experiences with mainstream education.
My child was diagnosed with chronic separation anxiety. Since leaving school, my child has refused to be looked after by anyone else but myself. It took a month before they could leave the house. It was five months before we could drive 15 minutes out of town. I have missed funerals, weddings, social gatherings, every social event and the freedom to walk around the block or drive somewhere on my own. I withdrew from my volunteering positions and work with local AA, S-Anon and V-Anon meetings, Prevention Against Family Violence Network, Network of Youth Services and ongoing support and mentoring for young women.
All in all this year was the worst year of the 18 years I’ve been sober.
My child lost their school, their education, many friends, their confidence, social connection and their happiness and joy for living. We lost relationships with my supporting parents, many friends, my partner and many family members. I lost my business, career, mentor and financial independence, my self-esteem and self confidence and happiness.
Our grief and loss has been insurmountable.
But, we did not lose all this for nothing. We are slowly beginning to recover from PTSD. By taking Life at my child’s pace - and with the incredible support of their psychologist, paediatrician and speech therapist plus supportive friends and family, time, love, nurturing - their love for music, dance, singing, science and exploring have begun to return. Since leaving school, my child has finally started putting on weight. They are beginning to regain their physical health. Their sleep is improving. Their emotional health is improving. Our days are guided by what my child can manage, by what they want to do.
I am my child’s full-time carer. 24-7.
Some days we go fishing for hours. Others we skateboard for hours. Sometimes we do crazy science experiments. Every day my child spends hours and hours and hours exploring their love for music and very recently resumed guitar lessons and last week expressed interest in learning violin and piano. We have a second hand violin being restored for them to use and exploring the possibility of purchasing a keyboard.
Our experience of autism has been horrendous because it was not identified by educational professionals. The system that exists in our community has failed our family. It has directly resulted in a broken child, two broken adults and a broken family.
But we will not be defined by the system’s failures. We are confident that although autism will always throw up challenges for us in this neuro-typical world, we are learning ways to support each other in navigating this successfully. Autism is not a sentence and it’s not abnormal. It is instead nothing more than another way - of so many ways - to experience our world.
But it does require financial, emotional, physical and psychological supports and tangible structures to ensure inclusion, acceptance and healthy outcomes for our ASD and NT community.
With the assistance of other very enthusiastic parents and teachers (not mainstream) we are exploring the options of building an alternative education for children. We imagine this opportunity to include creative based learning that celebrates personal actualisation, individuality and freedom. To thrive, all our children require an empathetic, compassionate, nurturing and non competitive environment.
This is especially so for children diagnosed with ASD.
* We have grown into our autism since our submission. Read Our Culture to know what we have learnt and how we live now :)