SUBMISSION FOR THE ENQUIRY INTO SUPPORT FOR AUTISTIC CHILDREN AND
YOUNG PEOPLE IN SCHOOLS
SUMMARY
Why school can be extremely overwhelming for some autistic students. Not all autistic students are the same and require different environments and approaches. The current provisions such as accommodations in mainstream classrooms and the Autism Special Learning Program are not suitable for all autistic students. There are no outreach services for students who physically cannot attend school and the onus of their education falls to parents. Autistic students may need a separate learning environment to mainstream schools. The Big Picture Australia schooling model may be suitable for autistic students. The Collaborative Proactive Solutions model should be implemented across all Western Australian school and specifically for any autism specific programs. This submission is long and I encourage it be read in entirety as school refusal has been affecting our family for three years and is severely impacting our lives, and I have put a lot of thought into this submission.
Our family’s background
Our family has been struggling with school refusal for three years. Well I should say, I am struggling, the kids are happier than ever since we enrolled in homeschooling 8 months ago.
But I don’t actually want to homeschool, I want them to be able to attend school, which is just not possible with the schools we have in our area, as we are regional not metropolitan so choices are limited.
As a background, I have seven children who have all been assessed and diagnosed with Autism both Level 2 and Level 3. Four of my children have been diagnosed as having the PDA Profile of Autism.
Six of my children have experienced School Refusal. One child has now aged out of school, one is thriving in an alternative learning setting at Community College, a Big Picture Australia school, and four are not able to attend school as there are no schools in our area able to cater for their disability related needs.
I have had children run away from school multiple times, been suspended for lashing out during an autistic meltdown, pulled off me screaming and locked in solitary rooms. In order to avoid going to school I have had children hit and bite me, hide under their bed and hide in cupboards. Their distress at being sent to school was extremely real and not just a child who was lazy and would prefer to stay home. They felt unsupported, unsafe and had a real fear of being at school.
I do not have the capacity to homeschool, therefore my children are not receiving any type of formal education. I myself am autistic with ADHD and executive functioning challenges, as well as being a single parent of 7 children with disabilities. Not only do I not have the time to homeschool, I do not have the headspace due to everything else I am responsible for.
I am also not able to work due to my children’s school refusal, which impacts our financial quality of life.
My children all receive funding from NDIS, but NDIS will not fund anything at all to do with education as it is the responsibility of the Education Department. But the Education Department is not providing any support for children who are physically not able to attend school due to their disability.
It is not my choice to homeschool. I want my children to be able to access the education that they deserve, but in an environment that meets their needs.
We worked with the Education Department for two and a half years trying to find a suitable school for them, but unfortunately we have had to resort to homeschooling as none of the schools offered have been able to cater to their needs. My children have experienced school refusal from five different schools.
The Education Department have advised that the only alternatives to mainstream schooling are an Autism Special Learning Program or and Education Support Centre. Children with a disability are not able to access the SIDE program (School of Isolated and Distance Education) if they have a permanent disability, it is only for students with a short term condition that they expect to recover from (among other eligibility).
If children are not able to physically attend school there is no outreach program provided to ensure they still receive an education. You can either remain enrolled in a school with no attendance, but you do not receive any outreach for their education. Or you are requested to enrol in homeschooling so the schools attendance record is not tarnished. Again, once you enrol in homeschooling, not by choice but due to disability, there is no outreach program to ensure the children still receive an education, the onus and responsibility is put onto parents.
Please find attached the document I prepared for our submission to the Human Rights Commission in regards to negligence and discrimination from the Education Department, which outlines the attempts we have made for one of my children at finding a suitable school in our area. The attempts were also made for two of my other children but I have not put it down on paper or lodged a complaint to the Human Rights Commission at this stage.
I will also attach a letter of complaint I wrote to one of the schools but did not end up submitting, as I realised that no matter what I said, it was not going to make a difference to the support my daughter received. After this incident I then made the hard decision to withdraw from schools completely and enrol in homeschooling. This letter shows the lack of support and understanding that is available in schools even when there has been an extensive handover and they are aware that the child is Autistic and is struggling to cope.
Why school can be overwhelming for autistic students
Firstly I would like to say that while this submission relates to Autism, Autism itself is a spectrum and not all autistic people have the same needs.
My children present with the Pathological Demand Avoidance (PDA) profile of Autism, so many of the supposed traditional behavioural approaches that are used for autistic kids are the exact opposite of what kids with PDA need.
PDA is characterised by having an intense need for control due to high anxiety. Children may be labelled as difficult, defiant, oppositional or even manipulative, but far from being naughty, their avoidant behaviour is actually the result of very high anxiety levels.
“PDA is characterised by extremely high levels of anxiety, which result in an individual constantly trying to control their environment. This need to be in control and feel safe results in opposition and avoidance of everyday demands, difficulties with emotional regulation, and often severely challenging behaviour. PDA is an extremely debilitating disorder whereby individuals have difficulty living their lives without feeling the need to control their relationships, conversations and tasks to the point where they cannot function in a social environment without the right supports.”
https://mytherapyhouse.com.au/pathological-demand-avoidance-disorder-pda/
“There is an emerging awareness of a distinct profile of autism currently termed Pathological Demand Avoidance (PDA). Children with PDA do not respond to typical behavioural interventions and strategies, in fact any attempts to correct behaviours are usually met with escalation or even outright aggression. These are the kids who inhabit the ‘too hard basket’ in schools and many families resort to homeschooling as the education system is unable to manage the unique features and challenges of the PDA child.
One of the most consistent difficulties families raising PDA children encounter is the intersection between their child’s needs and the expectations of the education system. The social and academic demands are almost always overwhelming for children with PDA, often leading to one of two outcomes.
Some PDAers are brilliant at masking their challenges at school and explode once they arrive home leaving families to manage the fallout, but the school seeing nothing of concern so not inclined to provide added supports.
Alternatively, the non masking children find the demands intolerable and consequently are unable to manage their distress leading to disruptive and often destructive behaviours. The school’s answer to this is almost always to request children are collected by parents, and subsequently suspended.
Neither of these approaches are sustainable in the long term, with many families turning to homeschooling/unschooling out of desperation. The suggestions for managing PDA students
such as reducing demands, not using an authoritative tone, allowing for breaks from class as requested, are perceived as counter intuitive and met with resistance and even derision in many schools with staff often believing firmer expectations, boundaries and consequences will rectify the situation only to have them exacerbate them.”
https://www.autismawareness.com.au/aupdate/a-brief-history-of-pathological-demand-avoidance
According to the Home Education Network Victoria, 7 out of 10 children identified as having PDA are not able to attend school.
PDA and Home Educating – Home Education Network (home-ed.vic.edu.au)
According to a survey conducted by The PDA Society (UK) 70% of children with a PDA Autism profile are not in school regularly or struggle to attend. This figure is much higher than for the general Autistic population as a whole, and shows how challenging school can be for someone with PDA.
School – PDA Society
Children with pathological demand avoidance (PDA) often find it challenging to cope in school due to the specific characteristics associated with this condition. PDA is a profile of autism spectrum disorder (ASD) that is characterized by an extreme avoidance of everyday demands and expectations.
Here are some reasons why children with PDA may struggle in school:
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High Anxiety: Children with PDA typically experience high levels of anxiety and find it difficult to cope with even simple demands. School environments often have structured routines and expectations, which can be overwhelming for these children, leading to increased anxiety and resistance.
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Demand Avoidance: Children with PDA have an intense need to be in control and avoid demands placed upon them. In a school setting, there are various demands such as following instructions, completing tasks, and adhering to classroom rules. These demands can trigger anxiety and a strong desire to resist or avoid them, leading to disruptive behaviour or non-compliance.
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Social Interaction Challenges: Children with PDA often struggle with social interactions and have difficulty understanding and responding to social cues. This can make it challenging for them to develop friendships, engage in group activities, or navigate the social dynamics of the classroom.
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Sensory Sensitivities: Many children with PDA also have sensory processing difficulties, which can make it hard for them to cope with the sensory demands of the school environment. Bright lights, loud noises, crowded spaces, or uncomfortable clothing may cause distress and sensory overload, further exacerbating their difficulties in the classroom.
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Inflexibility and Difficulty with Transitions: Children with PDA often have a strong need for sameness and struggle with transitions or changes in routine. School schedules and
classroom activities can be rigid, and any deviation from their preferred routine or unexpected changes may lead to increased resistance and anxiety.
- Masking and Camouflaging: Children with PDA may develop strategies to mask or camouflage their difficulties in social situations. They may imitate social behaviors or comply with demands in the short term, but this can be mentally exhausting and may result in a “burnout” situation, leading to meltdowns or withdrawal in the long run.
It’s important for educators and school staff to understand the unique challenges faced by children with PDA. Implementing strategies that prioritize flexibility, reducing demands, providing a supportive and understanding environment, and using personalized approaches can help create a more inclusive and accommodating learning environment for these children. Additionally, involving professionals such as occupational therapists, speech therapists, and psychologists who specialize in working with children on the autism spectrum can provide additional support and guidance.
I know there is a big movement for inclusive education, but that means kids will still be attending mainstream schools. Autistic people need to be taught in a specific way in a specific environment. There is no way that teaching a class made up of 98% neurotypical students can have enough accommodations for most PDA Autistic people to be able to cope.
The sheer number of people in schools can be overwhelming, the busy environment with lots of movement and noise can lead people into meltdowns/shutdowns due to sensory overwhelm.
The pressure to be like everyone else when they know that they are not. They can be left out socially by neurotypical kids which can lead to low self esteem and not being able to go to school. Feeling like you have nothing in common with neurotypical kids can create huge social barriers. Being in a school full of other autistic kids will allow them to find others who can relate to them and make them feel accepted and included. Feeling ostracised and having no one to sit with at lunch can be very painful.
Perfectionism can lead to not wanting to answer questions or do allocated work as the fear of getting something wrong can be so overwhelming they are not able to answer anything at all.
The fear of judgement from others can be overwhelming as they already feel different so if someone thinks they have done something wrong they feel again like there is something wrong with them and they don’t belong.
Some Autistic students have a fear of using toilets at school and a fear of eating in public.
Wearing school uniforms which are not sensory friendly can be difficult and contribute to sensory overwhelm.
Being expected to speak in front of people, even in small group settings, can be overwhelming and lead to children shutting down or having a meltdown, even just being asked questions in class in front of other students can be too overwhelming.
Having different teachers every year and for different subjects can create problems as autistic kids are often relationship based, so if they don’t feel a genuine relationship with their teacher they will not be comfortable in that class.
Autistic people have heightened neuroception, their nervous system can pick up the energy of another person and will tell them if they are safe with that person. It cannot be faked, the words being used may sound nice but their neuroception will still be able to pick up if that person does not genuinely mean what they are saying.
Sports days can be extremely overwhelming, especially for children who are not sporty, and the whole day and the lead up to the day can be highly stressful. There is a break to normal routine, usually hundreds of students all gathered together, a lot of mayhem with different events going on a the same time, a lot of noise and colours, and a sense of feeling completely overwhelmed with not knowing what it going on when. Assemblies can also be the same.
Tests and exams are just a test of memory, not of knowledge, and do not properly capture a persons intelligence, just whether you have a good memory and good executive functioning, which can be severely challenged in some autistic people. Tests are also delivered under an environment of pressure and the stress can affect memory. Many autistic students will avoid tests completely as they find them too overwhelming.
Having to call teachers Mr or Mrs assumes authority, which can be hard for a PDA child. Calling a teacher by their first name puts them both on a level social hierarchy and builds trust and rapport.
Many Autistic students need an education assistant, but they also know (especially when they get older) that having an EA makes you stand out as being different or disabled.
Autistic kids need to be in a place where they can thrive. Where they feel safe, understood, valued, nurtured and heard, not the kid who is different and doesn’t fit in.
The current option for autistic students
Autistic children need to be provided with an environment where they can access the education that they are entitled to. The current options are not suitable and are preventing them from receiving an education, putting the onus on parents to homeschool as there is no suitable alternative being provided by the Education Department.
The current model the Education Department has of Autism Special Learning Programs is not suitable for all autistic students, especially kids with the PDA profile. The SLP program is basically just mainstream with accommodations, as the kids are still in the same mainstream classroom not a separate program. They are taught by the same teacher as the rest of the class, being taught in the same way as neurotypical children, which obviously isn’t working due to the large number of autistic kids homeschooling.
The current Autism SLP model does not work for children who become overwhelmed with noise, who cannot cope in group situations, who have selective mutism and become non
verbal and are not able to communicate their needs, who are not able to tolerate demands or perceived demands. It is aimed at students who are assessed with Level 2 Autism, it does not allow students assessed with Level 3 Autism.
The common use of the evidence based practice of Applied Behaviour Analysis (ABA) in Autism Special Learning Programs precludes PDA children from accessing these programs. ABA is based in authority, control, and rewards and consequences, which are all approaches that will trigger anxiety in a child with PDA, as they need autonomy, control and freedom to make their own choices without pressure.
I believe that the current philosophy of ‘behavioural intervention’ is actually backfiring and creating an environment that triggers unwanted behaviour.
What could work better for autistic students
Watching my daughter thrive in a Big Picture School there are many concepts that this program embraces that I feel would work with autistic children, especially those who have the PDA profile, and I would love to see this concept provided as a separate alternative learning setting by the Education Department.
Every child deserves, and has the right to, an education, however every child does not learn in the same way, and I believe alternative learning environments need to be provided.
My daughter is having great success at a Big Picture School and I believe this model would work exceptionally well for Autistic students, and in particular PDA students.
Big Picture Australia schools operate on a child led learning model, so the child chooses their subject for the term based on their individual interest, giving them choice and control.
Mainstream school usually requires all students to participate in all subjects, there are many subjects autistic people may be extremely uncomfortable doing, which may even trigger meltdowns or shutdowns, such as sport, drama, music, even maths and english. This is not true of all autistic people, as some may excel in these areas, but all autistic people are not the same, so the same subjects may be torture for others. Which then can result in extreme anxiety leading to refusal to come to school at all just to avoid the subjects they cannot do.
Rather than “teaching” kids a specific curriculum that every child in the class is required to follow, interest led learning will allow a child to excel as they are interested in the topic rather than being labelled as naughty, lazy or stupid when they are not able to engage in a topic they have no interest in.
Special interests should be explored and embraced as this not only makes them happy but also is how genius can occur, and amazing inventions and breakthroughs can be made.
At a Big Picture school students get to wear their own clothing which meets their sensory needs and choice and control.
They call their teachers by their first names which builds an equal relationship with less perceived authority, this eliminates perceived loss of control due to authority.
At my daughter’s school there is a max of 16 kids per class, I would expect to see smaller classes for primary school students.
This school is a high school, but they only have one teacher and one EA for three years, not expecting kids to cope with 6 different teachers a day for each different subject. This eliminates difficulties experienced with different expectations from different teachers and also difficulties with transition.
The same teacher and support staff stay with the children for multiple years, this provides continuity of relationships and allows the knowledge of your child to continue each year, not having to start fresh with a new teacher. This develops trust and safety.
Data from Big Picture indicates its schools in New South Wales have higher Year 12 completion rates and lower suspension rates when compared to mainstream education.
The Big Picture system deliberately focuses on an individual student’s progress, rather than ranking them against their peers.
They encourage students to pursue their interests and be assessed on how well they do that work, not compared to each other.
I would like to see this model of school introduced by the Education Department, including starting from kindy, not just available for students in high school in a private setting, as their current model does not start until year 10.
Outreach Program
Some students still may not be able to cope in a Big Picture model school, or there may simply not be one available in their area for them to attend.
I believe the Education Department should have an outreach program for students who cannot physically attend school due to their disability.
Parent’s should not be expected to be responsible for their child’s education, it is the right of every Australian child to receive an education provided by the government. Not all parents have the capacity to homeschool, therefore putting extra pressure on an already strained family unit.
The model I would like to see implemented would see educators visit children’s homes at least weekly, and help collaborate with the student around their education, with a model similar to the Big Picture program.
This may seem like a costly exercise but when compared to the highest funding a school receives for children with disabilities I would expect it to be comparable.
Collaborative Proactive Solutions
I would also like to see Collaborative Proactive Solutions (Dr Ross Greene from Lives in the Balance) introduced into all Western Australian schools, but in particular in any Autism specific school or program.
Collaborative Proactive Solutions (CPS), also known as Collaborative and Proactive Solutions (CPS), is an approach developed by Dr. Ross Greene that aims to address challenging behaviours in children and adolescents. It is especially relevant in schools, where it can help create a more supportive and inclusive environment. Here’s how CPS can benefit schools:
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Shifts the Focus from Punishment to Problem Solving: CPS moves away from traditional behaviour management strategies that rely on punishment and rewards. Instead, it emphasizes collaborative problem-solving between adults (educators, administrators) and students. This approach recognizes that challenging behaviours stem from unmet needs and lagging skills rather than intentional misbehaviour.
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Increases Understanding and Empathy: By engaging in collaborative discussions with students, CPS encourages educators to gain a deeper understanding of the underlying factors contributing to challenging behaviours. It promotes empathy by recognizing that these behaviours often result from difficulties such as anxiety, sensory issues, executive functioning challenges, or unmet social-emotional needs.
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Encourages Student Voice and Autonomy: CPS involves students in the process of problem-solving and decision-making. It gives them a voice and empowers them to express their concerns, preferences, and ideas for finding mutually satisfactory solutions. This approach helps foster a sense of autonomy and ownership over their behaviour and encourages active participation in finding solutions.
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Promotes Positive Relationships: The collaborative nature of CPS builds positive relationships between educators and students. By working together to address concerns and find solutions, trust and mutual respect are fostered. This positive relationship contributes to a supportive and nurturing school climate, which can enhance student well being and academic success.
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Individualizes Support and Interventions: CPS recognizes that every student is unique and has different needs and strengths. It promotes individualized support by tailoring interventions to address specific challenges faced by each student. This approach helps identify the underlying causes of behaviours and develop targeted strategies to support students effectively.
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Teaches Problem-Solving and Self-Regulation Skills: By engaging in collaborative problem- solving discussions, students learn valuable skills in identifying and articulating their needs,
considering alternative solutions, and developing self-regulation strategies. These skills can have long-lasting benefits for their overall social-emotional development and self-advocacy.
It’s important to note that implementing CPS in schools requires training and ongoing support for educators. Professional development programs and coaching can help educators effectively implement the CPS approach, build their skills in collaborative problem-solving, and create a positive and proactive school culture that supports the well-being and success of all students.
Thank you for taking the time to read my submission, I am open to being contacted at any time in the future.
Kind regards,
Tanya Princi
5th July 2023
has been diagnosed with Autism Spectrum Disorder Level 2 and ADHD,and has Generalised Anxiety Disorder. presents with the PDA Profile of Autism (Pathological Demand Avoidance) which does not require a formal diagnosis but is a profile on the Autism Spectrum.
“PDA is characterised by extremely high levels of anxiety, which result in an individual constantly trying to control their environment. This need to be in control and feel safe results in opposition and avoidance of everyday demands, difficulties with emotional regulation, and often severely challenging behaviour.
PDA is an extremely debilitating disorder whereby individuals have difficulty living their lives without feeling the need to control their relationships, conversations and tasks to the point where they cannot function in a social environment without the right supports.”
https://mytherapyhouse.com.au/pathological-demand-avoidance-disorder-pda/
“There is an emerging awareness of a distinct profile of autism currently termed Pathological Demand Avoidance (PDA). Children with PDA do not respond to typical behavioural interventions and strategies, in fact any attempts to correct behaviours are usually met with escalation or even outright aggression. These are the kids who inhabit the ‘too hard basket’ in schools and many families resort to homeschooling as the education system is unable to manage the unique features and challenges of the PDA child.
One of the most consistent difficulties families raising PDA children encounter is the intersection between their child’s needs and the expectations of the education system. The social and academic demands are almost always overwhelming for children with PDA, often leading to one of two outcomes. Some PDAers are brilliant at masking their challenges at school and explode once they arrive home leaving families to manage the fallout, but the school seeing nothing of concern so not inclined to provide added supports. Alternatively, the non masking children find the demands intolerable and consequently are unable to manage their distress leading to disruptive and often destructive behaviours. The school’s answer to this is almost always to request children are collected by parents, and subsequently suspended.
Neither of these approaches are sustainable in the long term, with many families turning to homeschooling/unschooling out of desperation. The suggestions for managing PDA students such as reducing demands, not using an authoritative tone, allowing for breaks from class as requested, are perceived as counter intuitive and met with resistance and even derision in many schools with staff often believing firmer expectations, boundaries and consequences will rectify the situation only to have them exacerbate them.”
https://www.autismawareness.com.au/aupdate/a-brief-history-of-pathological-demand-avoidance
has a long history of not coping at school, which started when he was in pre primary, including meltdowns, shutdowns, situational mutism, suspensions, being asked to be picked up from school as he was unable to stay in the classroom, running away from school grounds, threatening violence, destroying property.
June 2020
started refusing to go back to Primary school after he had an assessment for Autism Spectrum Disorder, which was done on school grounds. I had conversations with both
the Principal and Deputy Principal and they both said there
was no help the school could offer in regards to re-engaging if I couldn’t get him to go to school.
July 2020
I made my first contact with the Education Department.
I spoke to at the Regional Office of the Department of Education and asked
what help they were able to offer to help re-engage , he said he would talk to Principal and mark him as absent for the rest of term 3 so we didn’t have to report absences. No help was offered in regards to re-engaging back to school. I was told if I couldn’t get him to school there was nothing they could do.
August 2020
It was suggested by Principal that would be better assisted by
enrolling in the Autism Special Learning Program at Primary School. I lodged an application 24 August 2020.
October 2020
Intake meeting at with . explained the SLP program was in a separate
classroom which contained around 8 children. They had one teacher and an Education Assistant in the classroom.
wanted to have an appointment with a psychologist at which she was
organising.
November 2020
asked me to call , which I did 3 Nov 2020 but was unable to secure an appointment with them.
December 2020 advised at a meeting that had secured a place in the SLP for 2021 and gave me an application to complete which I returned by email 3 Dec 2020. It was discussed that over the school holidays I was to drive past the school and attempt to engage gave me a behaviour observation form to complete over the school holidays and a re-entry plan to attend school the following year.
February 2021
When school recommenced I was advised by that the suitability assessment was not actually complete and could not start school.
said that over the school holidays they had received more applications for the same year that was going in to and that they were withdrawing his place and were reassessing his suitability alongside the new applicants.
He was required to attend 3 observation sessions at . Also in attendance at the meeting was Principal who asked if I considered Home Schooling to be a better option for , which I replied I did not.
March 2021
I received a call from Principal who said that as our application for the SLP was
taking so long he had been advised by Education Dept to transfer to
as a mainstream student under a Section 24.
I expressed my concern at this as I didn’t feel it would be successful due to being in a mainstream setting, which he had previously struggled with, but believed it would
demonstrate to that could not cope in a mainstream setting and they would then
accept him into the SLP.
I phoned Ed Deparment Lead Psych and expressed my concerns as I did not
feel sending to mainstream was going to be successful. said she would phone
to share my concerts.
8 March I received an email from at asking me to make an appt for the
uniform shop and see classroom. I replied to her email saying that we had not been given a start date and are we going to book a time to discuss his re-entry plan, which I was told they would do if he was accepted into the SLP.
I had no reply from in regards to a re-entry plan.
9 March I attended to purchase a uniform. I had requested a meeting with Principal to discuss what his re-entry plan would be. I was told would be available for a quick 10 minute conversation.
I sat in a chair and stood. I asked what the re-entry plan would be, she stood above
me and pointed at me, told me that as was being transferred as a mainstream student that he would not be given a re-entry plan and would be treated as every other student, because I told them that he is ready for mainstream school.
I said that was definitely not the case and that it was at the request of and the Education Dept that we were being transferred, and that I believed needed substantial accommodations in order to succeed in mainstream schooling.
said that the school psychologist will be advised to follow up with me to create a plan.
I phoned after the meeting to advise my concern at starting school at
without a re-entry plan. I believed he should be on a gradual return to school with a graduated timetable as he had already had 9 months off school. I also advised my concerns as the school did not have a gate and had been running away from school grounds for many years, and I wanted to know what procedures would be in place if left the school premises.
said that although they had nothing in place they would be working on procedures as a priority.
10 March I received an email from saying that they believed was ready for
mainstream school and that various sources, including myself, have supported this perception.
This is definitely not what I told , , or .
started at 11th March 2021 and attended school for 4 days.
On the 5th day he did not get up and ready for school. He would not talk to me, and was hiding under his blankets. The next morning he was hiding under his bed and would not talk to me. The following morning he was hiding in his cupboard and would not talk to me.
19 March 2021 I sent the following email to at the Education Department and cc’d and :
“ started with Primary Thursday 11th March and attended school for 4 days.
As of 17th March he has refused to go to school. Yesterday he was hiding under his bed at school time and today he was hiding in his closet. Due to being on the Autism Spectrum becomes non verbal under stress and he is unable to articulate to me why he does not want to go to school.
| applied for the ASD program 25“ August 2020 and was told that J would be able to attend
the program in the second week of Term 1 2021. The school has since withdrawn that offer and we are still waiting for a decision to be made about the program as at 18“ March 2021.
Principal discussed with me the option of transferring | into
mainstream schooling with on a Section 24, pending a decision being made in regards to the SLP. I was told that he was accepted into I by the office staff, neither [J nor i contacted me to discuss this.
During the process of our application for the ASD SL? iii stated that would have a school re-entry plan put into place to ensure his successful transition back to full time schooling.
| asked [J via email 9" March if we were able to catch up to discuss a re-entry plan, J
advised that the school ladies were handling it.
We were asked to come to the school at 2.00 10“ March to purchase uniform and told
would be available for a 10 minute chat. | asked what re-entry plan they would be putting in
place and she stated that they had no data on therefore would not be putting a re-entry plan in place and would just wait and see how it goes.
| also asked if any EA time would be allocated to him to help his reintegration into school after
being away from school for 9 months and was advised they did not allocate EA’s to specific students.
| also asked what they were putting in place if | | became heightened, and she said that they
will observe how he goes in the next few weeks before putting anything in place.
have been given comprehensive reports from previous schools, including previous behaviour management plans and his Autism Assessment, as well as comprehensive meetings
with myself as well as the Principal, Deputy Principal and Teacher from | over the
past 6 months.
| have mentioned to fj that since the age of 5 MM has often run out of the classroom and
has on several occasions run away from school grounds. This is of huge concern to me as
HE is not a gated school.
| voiced my concerns 0 ii who immediately contacted a. the Lead
School Psychologist, who told me they would put a Risk Management Plan in place. She has advised that the school psych, is working on it. In the meantime there is no plan in place to protect his safety should he run out of school grounds.
| was not given the opportunity to talk to J teacher before he started school.
| feel that all progress | have made, as well as the effort put into a successful transition by
GE Primary, over the past 9 months in encouraging [J to want to go back to school has
been completely undone by J Primary. They have not shown to be open to discussing my concerns or putting anything in place to increase the chance of i” successfully transitioning back into the school environment.
As we are now back at square one with i refusing to attend school once again, | welcome
your input and would also welcome a meeting with yourself, to investigate what can be done by the Education Department to assist in getting my son back into school and recommence his education.”
PF replied by email 19 March 2021:
“Thank you for your email related to the educational provision of your son J at a
Primary School
| am very sorry to hear that has not been at school for the past3 days as | understood he
was settling positively into the new environment under the Section 24 provision from i
mam’
| am committed to ensuring there is robust planning and flexibility of tailored options and
opportunities within our education facilities in the area to accommodate for the individual needs of students and would be very happy to conduct a Complex Case meeting with you and other stakeholders to follow up on your request to “investigate what can be done by the Education Department to assist in getting my son back into school and recommence his education”.
To this end | will be asking one of my Lead School Psychologists to invite the
Principals of Mj Primary School, Primary school, your support through is and other required stakeholders in the Autism education space to a case conference early in
term 2 to plan for educational provision and placement. | will chair the case conference
and oversee the development of the plans from a Regional perspective.
In the meantime if is able to return to PS | believe it would go a long way to
reducing his disconnect from school leading into the holiday break. Mj will be in touch.
April 2021
A meeting at MJ Primary school was organised for 29 April 2021.
In attendance at this meeting were:
Myself
(Director of Education,
BEE ®sion
Principa
Deputy Principal)
rincipa Deputy in charge of SLP) chool Psychologist)
SSEND Respresentative QE was cc’d in the email but it was a woman who attended)
rere Autistic Network as my support person)
(Behaviour Therapist as my support person)
| was not provided with minutes from this meeting.
My interpretation of the outcome of the meeting was:
told that they were to accept Mj into their SLP Program. [ij said that she would provide any funding that was required to ensure he had a place in the program.
| | said that her desired outcome was that would attend the SLP at i Community
College for the following year of highschool. Her aim was to create a pathway to make that happen.
30 April | was sent an email from J with a Letter of Acceptance into their SLP.
| was contacted by [J previous teacher I by email 7 May asking [Jj to log in
to their online learning portal to complete work at home as part of his re-entry. This was
problematic and | | attempted the work but then refused to engage with it any more. | had not
at this stage been given any information regarding his re-entry.
May 2021
| received an email from 14 May advising:
“| followed up with I today after our discussion regarding a plan to support
commencement in the program at PS. | raised the following points with ii based on
our conversation;
We are agreed that the aim will be to commence i at school in week 6. The best day for
| to start will be Tuesday 25" May, as there is a school meeting on the Monday.
Prior to starting | he will have a tour of the school to ensure he is aware of locations and
facilities and feels comfortable the school environment. | has nominated Friday 21st
May between 11.00am to 11.15am for the tour.
You would like to meet with school staff to discuss the details of the program and meet with teacher. This can occur after the tour on Friday 21*t May at 11.15am to 11.45am. This will be a positive opportunity to discuss the program just before commencement date and to allow any important questions to be answered. The school would like you to provide your key questions to me via email by Thursday 20“ May so that they can prepare any
information you may require. Could you please email me your key questions at your convenience?
We are agreed that an avenue for feedback between you and the school is of great importance. We discussed possibilities including a communication book, Connect community or email process. The school would prefer to use email to establish a communication pathway with you.
You mentioned the importance of being alert for indicators of anxiety and disengagement for so they can be immediately addressed. The school would appreciate you emailing me any signs that you have observed that might indicate arising concerns (ie negative self-talk reflected as verbal statements). This will enable the school to be aware of and respond to concerns.
The plan to complete school work at home has met with difficulties and you would like to disband this at this stage.
I hope this assists to clarify start at PS. Please let me know if you would like to
add anything further.”
I replied to 20 May:
“ will not be able to start 25th May as you have mentioned as I have not been provided with a re-entry plan to date.
I am willing to attend a meeting with school staff to discuss the program 21st May at 11.15 but I don’t think it beneficial for to attend until I have had a chance to find out about the program.
I have no key questions to provide until I find out more about the program.”
24 May emailed me a copy of the proposed re-entry plan.
I replied to email:
“I’m not sure why have given you the same re-entry plan they tried to implement in December?
I have not been given any of the information in the transition plan and it’s been 4 weeks since was accepted into the program.
I still know absolutely nothing about the program itself even after repeated requests.
I have just about had enough of trying to send him to school, I have pushed so hard to try and get an education for my beautiful, smart son, and I still feel like I am getting no help at all.
It’s feel like this is just one big game for everyone while he is getting further and further behind.”
I attended a meeting with at 29 May 2021. advised that the SLP had
changed from what I was originally told the year before. That the SLP was no longer in a
separate classroom with 8 students, but children enrolled in the SLP were now in the same mainstream classroom with all other students.
When I asked how that would work to accommodate sensory needs advised that the
students could work in another quieter room by ‘tagging out’. This alerted the teacher that they were feeling overwhelmed and needed to work in a quieter environment. I advised that does not have the skills to recognise when he is starting to feel overwhelmed and would not be able to communicate that he needs help as he has selective mutism and becomes non verbal under stress.
I explained to that I believed has extremely high anxiety and the PDA Profile of
Autism (Pathological Demand Avoidance). advised that she did not think the SLP program would be suitable for someone who presents with the PDA Profile of Autism and that she believed the program was not suited to .
I contacted my local Member of Parliament 20 May asking for an appointment to discuss the problems I was having within the Education System. My concern was directed to the Education Minister Sue Ellery. I received a letter advising that someone from the Education Department would contact me.
June 2021
I emailed Principal 9 June 2021 to withdraw him from the SLP:
“I have had to make the decision to withdraw my application from SLP Autism Program and commence homeschooling with .
Unfortunately I have 4 different children refusing school, and they are enrolled in 4 different schools that I am having to deal with. I am completely overwhelmed with the constant battle of trying to get my kids to go back to a school system that they don’t feel confident or comfortable in.
While I appreciate being eventually accepted into the program, because of the prolonged
process has lost his eagerness to go to , especially knowing that he has to go into
the same classroom as he was in for those 4 days. As the program has changed from 8 kids in a class to being integrated into a mainstream class, it feels too overwhelming to him.
It has been 12 months since was at school, and I have expressed from the beginning that I had no intention of homeschooling, but with continued resistance I feel the only decision I can now make is to homeschool him.
Thank you for all the time you have put into helping me to get to school.”
emailed her reply 9 June:
“Thank you for your email and we wish you and all the very best. I trust home schooling will provide him with a pathway forward into ongoing educational opportunities.”
I emailed Director of Education 11 June:
“I wanted to explain to you in more detail my decision to withdraw my son from the SLP.
I wrote to you several months ago requesting help from the Education Department in finding a solution to get back to school. At the meeting that was set up I believe everyone involved had already decided that the only solution was for him to attend the SLP.
That was not the reason that I called the meeting. I did not want the outcome to be a placement in that program. While the program is considered Autism specific, Autism is a Spectrum and can have co-morbid conditions, and my understanding of the program is that it would only be suitable for a very narrow selection of Autistic students.
After another meeting with about the way the program is delivered, I do not believe it is suitable for He needs much more intensive support in the school system. Especially as the premise behind the Autism program is to have small class sizes for more support and to combat sensory needs, but has changed their program to include Autistic students in the mainstream classroom.
My preference would be to send him to a program similar to the SLP at South which has a high level of support staff and small classes of around 8 students, however as the principal of that program explained, that program is not suitable for either.
I understand that the Education System itself is not set up with specialist facilities for Autistic students, in my opinion there is a real gap in what is provided and what is needed.
I do not want to home school . My life has way too much pressure as a single parent with 5 autistic children, 4 of whom refuse to go to school. I am overwhelmed, exhausted, have limited time to myself and my own mental health is under pressure, so home schooling is not an option.
I would like to meet with you to discuss what can be done to help not just , but all 4 of my Autistic children who are struggling in the school system. I understand that there are alternatives within the Education Department from my research, but it is overwhelming trying to deal with it all myself and I am in need of support.
I look forward to your reply.”
I attended a meeting at the Department of Education Regional Office with
, and .
I was not given minutes from this meeting.
My interpretation of this meeting was:
believed the best high school for was the SLP at Community College.
It was also mentioned that the Education Support Centre at High School may be appropriate.
believed that as there was only 6 months remaining for year 6 it would be best not to look for a new primary school for as it would be easier to transition him to a new school only once, rather than again in 6 months for high school. Her suggestion was that she would arrange an intensive transition plan for high school.
Tia from the office of the Education Department phoned me in relation to my contact with the Education Minister, she advised that there was nothing they could do as I already had a case manager, . I explained that I didn’t think my case manager was doing enough and felt we needed more help. I asked if I could change case managers, she phoned back and said that I could not request to change case managers.
I had no further communication from the Education Department.
November 2021
I was told by Primary that had left her position as
Lead Psychologist of the Education Department.
I then made contact with the Education Department through NDIS support coordinator from HERA.
Please see attached letter from support coordinator outlining numerous contacts with the Department.
We were then allocated another case worker Lead School Psychologist .
Support coordinator was advised in an email from dated 29 Nov 2021, that she was contacted in August by in regards to an
enrolment in their Education Support Centre. advised that she made aware that
would never be the case as ASD assessment was not of that level and he did not have an intellectual disability. mentioned that she would seek an enrolment at Community College as it was the better educational option for him.
December 2021
I attended a meeting 8 December at the first week of December 2021, in
attendance were , , , .
I was not provided minutes to this meeting but see HERA letter for their notes. advised that
the previous offer of being enrolled in the SLP at Community College was no longer
possible as the program was full.
February 2022
I attended a meeting and school tour of the Education Support Centre at High
School. In attendance were , , (Positive Behaviour
Support engaged for ), ESC Principal.
At this meeting it was made clear that as does not have an intellectual disability it would not be the right place for him, it would also not meet his sensory needs as it was an extremely loud environment.
I had a meeting with 21 February. advised that the previously offered SLP
program at Community College was no longer available to as it was full.
believed that as was living in the intake zone for College that would be the most
appropriate placement.
March 2022
I attended a meeting at College 3 March in attendance were ,
(Student Enrollment Officer), (Learning Support Officer),
was unable to attend.
A plan to enrol and create a staggered re-entry to school was established.
14 March 2022 had his first meeting at College with , Student
Liaison Officer.
April 2022
8 April, last day of school for term 2, had a shutdown at school where he was unable to move or speak, and it took 40 minutes to coax him into my car from him freezing at the school door. I sent the following email to so that it was put on record:
“Thank you for your help today with shutdown. It took another 20 minutes before I could coax him into the car, he is still in the car parked in our garage now an hour later, refusing to come out.”
School started back 25 April and I don’t know the exact days, but attended school for about 3 days over the next 2 weeks.
GM then refused to go back to I College.
June 2022
| attended a meeting at College 1 June, in attendance were ;
| . It was decided that
come to our house to try and engage with and encourage him back to school.
would
had come to our house 8 June. was unable to speak due to selective mutism.
sat in the same room although not with us, but
| have had no further contact from the Education Department with where to go from here or
what options we have for ij to receive an Education.
July 2022
1 July Support Coordinator contacted [ Lead Psychologist to discuss
a further plan to re-engage in school. | did not hear back from a.
GE came to our house 28 July, unfortunately [J stayed in his room and refused to engage.
September 2022
emailed advising that | would like to discuss what options the Education
Department have for (and my other two children with school refusal). MM also advised
that | have been discussing my situation with F | Lawyers.
GE Phoned 9 September to discuss and book in a meeting.
| attended a meeting in my home 13 September with IE anc i.
| have not yet been provided with minutes from this meeting although they have been
requested.
Please see below notes provided from J and her email to NN 14 Sept.
“Thanks very much for your time yesterday to discuss my notes below FY! and so that Mj has a copy. has had some time to process yesterday’s meeting. remains concerned that a mainstream environment is not going to be suitable to . He is very withdrawn and will not
discuss any future plans. | reflected back to her that our initial meeting keeps coming back to
me, where you discussed readiness for school, and building skills that would make
school engagement successful. | understand this is partly why you recommended the Yes
program. advised today that she does not believe that a mainstream environment will be eee at this time, and wishes there was an outreach style model of education
and . ve captured
asked that | call today now that she
that could be offered to him. For this reason she is going to progress her queries further with .”
Meeting notes 13.09.2022
Attending: , (Lead School Psychologist), (Senior
Support Coordinator)
discussed SIDE explored and he will not meet criteria, and this support with COVID and increased mental health needs of children this program has become very narrow for entry. Discussed College and that when recess was introduced, this is when willingness to attend school changed. It’s not clear if there was an incident or event that lead to withdrawal. SSEND - Compass meeting. Record keeping compass that’s client centred, hopes, dreams,
worst case scenario's. Would need interest and engagement. runs the meeting.
e.g. if social engagement with neurodiverse peers is a goal, then SWAN ‘YES’ program could be
connected. explained in general the different personalities that attend this group. seeking
to find opportunities for to be successful. discussed does not want to interact with people he doesn’t know. He likes a friend of who will come and play a murder mystery game, and liked the escape club. Still has a love of space. discussed SHS is current catchment and they have the Talented and Gifted program. to explore.
My interpretation from this meeting:
believed the best option is to enrol in Senior High School as his sister is
enrolled to attend there next year. I explained that has already demonstrated that he is not able to attend school in a mainstream setting as he has already had school refusal from three different schools.
stated that the Education Department does not recognise PDA as a disability as it is not listed in the DSM V. I explained that the disability is Autism and PDA is a subtype which is not listed specifically in the DSM V but has been recognised in Australia. The Autism CRC (Cooperative Research Centre for Living with Autism) released a national guideline in 2018 acknowledging the PDA profile as part of the autism spectrum. This guideline document has been endorsed by the National Health and Medical Research Council (NHMRC) so represents optimal clinical care in Australia.
believes that has “lagging skills” and with the right interventions he will be able to cope in a mainstream school. I tried to explain that disability is a nervous system disability and not a lagging set of skills, and that while I appreciate that the brain can learn, it will take years of
therapy for to be able to develop those skills, meaning would miss many more years
of education.
said that she is not worried about his education, that he needs to be at school to develop social skills. I stated that as mother I am certainly worried about his education, having not been at school for over 2 years since the age of 10.
advised that if is not able to go to a mainstream school in our region then there is nothing else the Education Department can provide for him. They do not have any type of outreach program or funding if a disability prevents someone from being able to attend school.
Senior High School
Attn:
Regional Education Office
Attn:
The morning of 15 November 2022, my daughter was registered to attend the Step Up Orientation Program at Senior High School.
has been diagnosed with Autism Spectrum Disorder, is on waiting lists to be assessed for ADHD and Specific Learning Disorders, and has extremely high anxiety.
I had a meeting 3 November with High Year 7 Coordinator ( ) and Student Service
Coordination ( ) regarding transition support for , also in attendance was our
Support Coordinator from HERA.
I provided diagnostic reports, a letter from PS for the diagnostic team as well as recommendations from (Occupational Therapist) regarding guidance for transition to support.
I relayed my concerns that as is already struggling to cope in primary school, and given her current struggles, her overwhelming anxiety, the size of the highschool, the new students, the new teachers, the volume of students and noise levels of the environment, I am highly concerned transition will not be successful.
I explained about a situation the previous week where had felt unsupported during swimming lessons, which led to her not being able to attend school. This has been ongoing and has felt unable to return to school since.
I stressed that will need extra support and accommodations due to her disability, in order for her transition to high school to be successful. She currently has an EA at Primary but High advised she would not be allocated an EA.
I told them that is really nervous and scared about going to high school, and that she is already asking to be homeschooled instead. I stressed the importance of making feel supported at school or she was not going to be successful.
The morning of the orientation was extremely nervous to attend, and it took me over an hour to convince her to go. Her condition for going was that I stay with her, which I agreed.
When we arrived at the classroom where the other students were, we were greeted by , I explained that was not feeling that she could stay for the morning without me being present.
advised that parents were not able to stay. I explained how nervous was and how hard it was for her to get here this morning, and that the only way she felt she could stay is if I stay with her.
said that as other parents had asked if they could stay and they said no, that she couldn’t make an allowance and let me stay, but I was welcome to stay on school grounds.
By this time was in tears and starting to get quite upset, so I knew that me staying on grounds was not going to be enough support that she needed.
then walked back into the classroom.
A High EA ( ) came out of the room to talk to us and I explained how
anxious was and that I needed to stay to support her.
I said how upset I was that once again a school was not making the necessary accommodations for my children and that they were not understanding the severity of my child’s disability. The school appeared to just expect to be able to cope, but when she couldn’t they were not willing to make the necessary accommodations that she needed in order to be successful.
said that she would talk to to ask again if I was able to stay, but by this time was extremely upset and said that she needed to leave.
When I said that we were leaving, asked what the problem was. I again explained that was feeling highly anxious and didn’t feel she could go into the room without me and has asked for me to stay. said that wouldn’t be possible, that the needed to get to know the students without their parents present.
This unfortunately resulted in them not getting to know at all as she was not able to even walk in the room without my support. Her best friend was in the classroom and I was hoping that once was settle, with her friend and feeling comfortable in the room that she would then be happy for me to leave. But she was not given that chance.
I find this mornings situation highly discriminatory, as the schools lack of willingness to allow what she felt she needed has now resulted in her not being able to attend the orientation, and not wanting to go to that school.
I did my job as a parent of convincing and supporting my child to attend the orientation, but I feel very let down that the school did not provide adequate support to a child who was clearly in distress.
If High is not willing to make a simple accommodation in the first five minutes of an orientation that has been put in place specifically for kids who are anxious about transitioning to
high school, I have absolutely no faith that they will be willing to make the necessary accommodations needed for to succeed at high school next year.
I am tired. Of schools just expecting Autisitc kids to be able to cope. If they could cope without accommodations it would not be called a disability.
I am tired. Of parents who know what their kids need but being dismissed.
I am tired. Of an education system that is not willing to make the appropriate accommodations for kids with disabilities therefore not allowing them the education that they deserve.
I am tired. Of no alternatives to mainstream schooling, just the expectation that Autistic kids need to push through their disability and cope like everyone else.
I am tired. Of asking for help but not getting it.
I don’t want any more meetings with High, I am tired.
I have enrolled in home schooling as I do not feel there is a high school in the that is capable of meeting her disability related educational needs.
What I would like is for the Education Department to work more proactively on making accommodations for Autistic students. To stop being reactive and start being proactive. To proactively find out what autistic students need in order to make their schooling successful and to be able to thrive, not just push through and cope. And to listen to parents who are actively trying to support their kids.
I welcome a response to my complaint and would like to hear what resolutions are being put in place to prevent this lack of support to all current and future autistic children.
Regards,
Tanya Princi
18 November 2022