Submission
No 119
INQUIRY INTO SERVICES FOR PEOPLE WITH AUTISM SPECTRUM
DISORDER
Name: Name withheld
Date Received: 22 April 2016
Name
withheld
Submission S119 Received 22/04/2016
Family and Community Development Committee
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situations that might have lead to a meltdown because | myself understood what it meant to be overwhelmed
by the neurotypical world. Unknowingly, and more by luck than design, | had created a life for him that
actually prevented him from commonly experiencing meltdown. But | didn’t know that because my own (then
undiagnosed) ‘Aspieness’ had always informed my parenting. | knew that clothing tags are uncomfortable (|
had always cut my own tags off) so | cut off Brock’s tags. | knew that change was difficult for Brock because
change had always been difficult for me. | Knew that Brock would have a lot of anxiety at school because | felt
anxiety at school. | made sure all fabrics were soft and not tight, encouraged rocking knowing how soothing
| found repetitive physical action to be. | Knew Brock was super sensitive that he needed a very gentle,
compassionate, flexible, nurturing and non judgemental teacher, someone “low triggering”, because | had
needed these things to feel okay and safe to ask and re—ask questions. | knew that processing directions
would be hard for him because | 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. | didn’t know that |
myself was ‘on the spectrum’ so | didn’t anticipate anything unusual or traumatic. But my parenting style
had largely buffered Brock from many of the overwhelming elements of a neuro-typical world, without even realising it. Brock’s entrance to school was the first time he was really exposed to the NT world, because
we had been living in a world that had been shaped by managing our ASD traits BUT | 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 ‘Aspieness’ had me parenting my autistic child in a way that would
best support him ... BUT | DIDN’T KNOW | WAS PARENTING AN ASD CHILD. | invested heavily in doing
what | could to best support him at his soon-to-be-school. | volunteered to paint murals, and develop the
school vegetable garden - all before Brock even started!
Back to the staffroom on the transition day. Nothing was working and | knew that Brock needed me to go
with him. So | walked with him to join the other children. As we arrived, the group were receiving verbal
instructions for a musical game. Brock remained uncertain. He did not join the group, instead staying by my side. In time he slowly joined the activity. We stayed until the session finished, around twenty minutes
and we left to go home. | Knew that something wasn’t right, but | couldn’t work out what it was. | recognised
that he was losing his confidence and self-esteem. | realise now that the verbal directions were incredibly
difficult for him to process and caused rising anxiety, fear and disconnection.
A few days later, after having witnessed his meltdown, the principal called me to say that she did not believe
Brock was ready for school. Following an emotional discussion in which | was crying on the phone, the only
plan offered was to enrol Brock for the first week of Term 1 “on trial”. | did not believe that this was a feasible
solution for Brock’s well being or emotional health. In the same week, Brock’s kinder teacher advised me that she thought he WAS 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!
| was chronically ill at the time with Fibromyalgia and knew his social and educational needs were outgrowing
what | was capable of giving him. | decided he was to start primary school.
| enrolled him at another primary school. In the week before school started. | relayed our experiences so
far. The new school did not indicate they identified any difficulties or saw any problems. | was made to feel
ill-prepared and demanding, however Brock started school.
But ‘stuff quickly started unravelling for Brock. For the first time ever, he started experiencing separation
anxiety each morning when | tried to leave the classroom. | thought this was ‘normal’ behaviour for a child
starting school and he would grow out of it once he became familiar with the school environment. | was
wrong. His attendance immediately dropped. He became a school refuser. | couldn’t get him to school. If
by some stroke of management and luck, | DID get him in the car, we would sit in the carpark for hours. The
teachers viewed me as the problem. | was represented as an overprotective mother who was contributing to
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school refusal. The staff repeatedly maintained that he presented no problems at school. | Knew something
wasn’t right.
This continued for almost two years. My concerns were not shared by Brock’s teacher/s and/or the school’s
leadership team. | Knew that something was not right, but | didn’t know what it was.
Brock was assessed by a psychologist who specialises in Autism in November 2014. We received her report in January 2015. The psychologists report stated: “Brock does meet the criteria for diagnosis for
Autism Spectrum Disorder.”
Brock’s January diagnosis came six weeks after his seventh birthday, so disqualifying him from receiving the financial and educational funding support currently available to children before they turn 7.
During the previous five years, | had been delivering a young women’s program (a project | had been
developing and designed for 17 years) at a local youth agency in the region. 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. In 2014, 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 Brock’s difficulties at school, and ongoing conversations with my ASD friend, that | began to learn about
ASD. | started researching and reading, quickly recognising that | myself had slipped through the system
as a child. | began to question if Brock was on the spectrum having listened to a friend whose four children
(and herself) were on the spectrum. She had been pointing out Brock’s ‘spectrum’ characteristics over the
years, since he was two. Unfortunately | didn’t take her thoughts seriously. This began to explain some of
the things that | had never understood about myself and Brock’s school experiences.
In January 2015, my work had attracted the support of an international entrepreneur who offered to mentor me and assist in rolling out the program nationally. However, Brock’s increasingly debilitating anxiety and panic attacks before, during and after school, were escalating. Despite the efforts of Brock’s psychologist and pediatrician to request additional support for him 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 | was told | should continue our
regular meetings with the school and work with what they had to offer. They continued to refuse this vital support and Brock continued to suffer enormously.
| wanted to fight for his right for assistance but all my energies were invested in getting him to school,
managing his meltdowns, multiple medical and well-being appointments, looking after him for the days he refused going to school or staying at school with him so school might be safer for him.
All the while, | was desperately trying to keep my business running.
By May our family broke down. Although Broke’s father and | separated, we 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 his already delicate situation.
Both Centrelink and Family Tax bungled applications. | didn’t receive any finance for nine months. By
necessity | had no choice but to financially depend upon my Broke’s father. He continued to work up to
100 hours a week to enable us to afford to pay for Brock’s interventions (multiple and ongoing medical
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and specialists appointments and assessments, intervention programs and materials). Broke’s fahter was physically and emotionally unavailable to himself, Brock or me. Brock continued to refuse school and his anxiety was beyond belief. The school offered little effective support. Our lives were spiralling into an abyss.
As Brock’s behaviour continued to become more difficult around others, | began to become socially isolated.
My friendships had failed me as they were unable to cope with Brock’s behaviours. Broke’s father was unable to provide any of the support we needed. My stress levels were peaking. At this point, the only emotional
support | had was from my mother. Recently diagnosed with breast cancer, she was experiencing stress of
her own. To compound matters, an incident of family violence by my brother against Brock and | forced he
and | to leave the state for a week for our safety. My mother was unable to accept my determination to sever
ties with my violent brother. Mum and | became estranged. | became suicidal.
By October 2015 Brock 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 his paediatrician and psychologist - namely that he be able to have 20 minute breaks each hour, breaks outside the classroom and away from other children. These recommendations were aimed at counteracting the overstimulation on his sensory system and cognitive exhaustion of the classroom environment and challenging social interactions, learning difficulties and central auditory processing disorder.
| painfully decided to remove him from mainstream education. Something | never thought I’d ever do. |
decided to home-school.
This was in fact impossible. My efforts to start home schooling did not factor in Brock’s inability to cope with everyday life. He had meltdowns that lasted all day. He would scream, yell, swear, experience panics
attacks, sleep disturbances, nightmares. He plummeted into even more distressing behaviours that | didn’t
understand. All the while | was finding it more and more difficult to support him. | didn’t know that we were
both traumatised. My dad, who has lived with us since before Brock was born, started leaving the house every day in order to cope with Brock’s meltdowns. This continues even now. Our relationship is severely wounded as is his and Brock’s.
In desperation, | met with the Family Support Worker at the R.I.S.E. Centre. This was a saving grace. We
borrowed some learning materials and toys for Brock. 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 Brock’s psychologist for four months (on the emergency waiting list) for support or direction. When we did finally see Broke’s psychologist in February 2016, she confirmed my thoughts that mainstream schooling had damaged our beautiful son. She diagnosed Brock with chronic separation anxiety acquired due to trauma experienced 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. | became Brock’s full-time carer to
begin healing from the trauma. He can’t learn until he is healthy. He 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 Brock’s experiences with mainstream education. Brock was diagnosed with chronic separation anxiety in February 2016. Since leaving school, Brock has refused to be looked after by anyone else but myself. It took a month before he
could leave the house. It was five months before we could drive 15 minutes out of town. | have missed
funerals, weddings, social gatherings, every social event and the freedom to walk around the block or drive
somewhere on my own. | withdrew from my volunteering positions and work with local AA, S-Anon and
V-Anon meetings, local prevention against family violence networks, youth services networks and ongoing
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support and mentoring for young women.
All in all 2015 was the worst year of the 18 years I’ve been sober. My child lost his school, his education, many friends, his confidence, social connection and his happiness and joy for living. We lost relationships
with my mother, many friends, my partner and many family members. | 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 the trauma. By taking Life at Brock’s pace - and with the incredible support of his psychologist, paediatrician and speech therapist plus supportive friends and family, time, love, nurturing - his love for music, dance, singing, science and exploring have begun to return. Since leaving school, Brock has finally started putting on weight. He is beginning to regain his physical health. His sleep is improving. His emotional health is improving. Our days are guided by what Brock can manage, by
what he wants to do. | am his 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 Brock spends hours and hours and hours exploring his love for music. He has very recently resumed guitar lessons and last week expressed interest in learning violin and piano. We have a second hand violin being restored for him to use and exploring the possibility of purchasing a keyboard.
Our experience of Autism has been horrendous because it was not identified by Brock’s 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 Steiner teachers we are exploring the options of building an alternative education for children in our region. 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.