by Anna Brasier, May 2017.
“After receiving an Autism Spectrum Diagnosis (ASD), the most common concern for parents is finding a suitable school.”
When Mary’s first child was diagnosed with autism at the age of five, she felt relieved. Knowledge is power, and for parents of children with autism, this knowledge gives them the tools they will need to support their children and steer them through their education. Mary now had a formal document that justified her child’s challenging behaviour and sensory issues. But what Mary wasn’t prepared for was the difficulty in finding the ‘right’ school for him.
After receiving an Autism Spectrum Diagnosis (ASD), the most common concern for parents is finding a suitable school.
Which school will best meet their child’s demanding needs, while nurturing their strengths and managing their challenges? The answer of course, should be any school — because, we hope that all schools can provide a positive education. However, factors such as government funding, teacher education and teacher-parent communication practices, all impact on a positive outcome.
Autism is a lifelong disability that affects how a person communicates and relates to people and the world around them (Amaze 2011). There are three areas that are significantly affected: communication, social interaction and imaginative thought.
ASD affects 1 in every 100-110 people (Amaze 2011). Amaze estimates that this equates to approximately 55,000 Victorians, and 250,000 Australians. Amaze is Victoria’s peak ASD advocacy body: they educate, inform and support the ASD community. Amaze also offers their expertise and advice for specialist options and education pathways.
Though it is important to be aware of the number of people affected by autism, it is more beneficial to be aware of the general lack of support experienced by those with ASD in the current education system, which leads to poor future employment prospects.
ASD education often begins with early intervention such as speech therapy and occupational therapy at the time of diagnosis. Early intervention is crucial, but it needs to be supported beyond the pre-school years. Funding must continue to support these children throughout their school lives. As children move from pre-school, to primary school and then onto high school, the education system becomes fragmented, this leads to inadequate education and poor career prospects.
This fragmentation has resulted in parents having to deal with ‘ASD school lotto’ for their children. And for parents such as Mary, who now has three children with ASD, the challenges are many.
In the 2009, Autism and Education report, figures from The Australian Bureau of Statistics (ABS) revealed similar results, and they recognised that, “Children with autism need a high level of support to attend school, with 41% needing a counsellor or disability support person and 51% requiring special tuition. Of those children with autism attending school, 24% did not receive any additional support.” (ABS 2009).
Anecdotal evidence from The First Step online parent support group supports this. After ‘how to deal with meltdowns?’ the most common discussion thread in the group is ‘how to find the right school?’ A common question asked is: Which schools are inclusive and supportive?
School is a challenging place for children with autism; the classroom, the playground, and the academic structure pose the greatest challenges. Children are expected to conform to the communicative and social interaction norms of the classroom. But classrooms are the hot-spots for stress and anxiety, which lead to a range of behavioural issues for the child. Finding a school which will look after a child’s sensory, social and emotional needs is a challenge for parents.
The question at the top of the list for any parent looking for a suitable school that will support their ASD child is, “How do you support kids with autism?”
However, if schools were taught more about autism and all teachers were given compulsory training on how to support these students, there would be no need to have to ask this question.
The strategies which benefit ASD kids benefit all students.
Mary is aware of the stress her children experience at school, and she puts a lot of effort into ensuring her kids remain calm and focused at home and at school. She says, “All three children require significant down time to recover from school.”
Mary explains how the ASD diagnosis gave her insight into her child’s behaviour. She has used this knowledge to educate herself about autism. “As my knowledge improved [about ASD], I began to understand how to change my parenting to suit his needs and our lives improved.” The knowledge has helped educate Mary, and it is this same knowledge which teachers need to be educated on, too. Mary says, “The most difficult thing is having to find out what the teacher knows about ASD, and then having to (sensitively) fill in, or work around the knowledge gaps of the teacher.”
When there is a lack of support for children, challenges include: anger, sensory overload, bullying, isolation, no friendships, anxiety, school refusal, lateness and withdrawal.
Psychologist and ASD specialist, Ivanna Cox has seen firsthand the negative effects an inadequate school system has on the ASD individual. She says, “The child develops comorbid mental health disorders. They [develop] a negative view of self, others, the world, and future.” These negative feelings lead to “school avoidance, social isolation, and eventual unemployment.”
Kelly is a mother to three children aged nine, eleven and thirteen years and the two oldest are on the spectrum. She describes the school experience like “A roller coaster, but then, that is our life, really. There are always bumps, but most we can get over, or around, by working with the school.”
Her thirteen-year-old first attended an autism specific school and has since attended a further two mainstream schools. Kelly knew that something was terribly wrong at the first mainstream school her son attended when she discovered several scrunched up notes in his school bag one day. As she smoothed the creased paper flat, Kelly was shocked by what her son’s handwriting revealed. She says, “They said things like, he was the worst child ever, that he didn’t belong, that he was the devil and that he was hated by everyone — that he deserved not to be alive.”
Unfortunately, when Kelly addressed her son’s deep sadness and self-hatred with the school, they didn’t see it as being of any concern, and they brushed off her concerns. They told her that they had ‘handled’ other children with autism, so they weren’t going to change how they did things. Despite an aide helping him with the minor ‘bumps’ during his time at this school, something was clearly wrong.
For parents who must be ‘on call’ for their children’s difficulties, they can experience: stress, anxiety, frustration, isolation and employment interruptions.
For some parents, the constant demands of supporting their child, in what they deem to be a hostile environment becomes too much and they make the choice to home-school. There are many reasons for this: the child’s mental health and physical safety are at risk, as well as the whole family’s well-being. Home-schooling is usually a last resort for families, but is increasingly becoming an option.
Ivanna Cox says that roughly 90% of her child clients are seeking therapy for school related problems, of which she estimates, 10% are children who do not attend school, or are home-schooled.
Ivanna notes that schools that promote a child’s well-being have a direct and positive outcome on the student. She says that children respond positively when they feel their needs are being met, and they have a positive view of “self, others, the world and future.”
Ivanna says that teachers can implement simple measures in their classrooms that “promote an environment of respectful inclusion”, and show positive results to benefit all students.
Ivanna recommends several strategies that can be implemented to support ASD children to have a more inclusive and positive experience. Starting with an Individual Learning Plan (IPL), devised by the child’s allied health professional; suitably qualified Integration support staff; the use of visuals; sensory-friendly classrooms with supervised spaces for quiet time and self-regulation.
In her video on teacher education, ASD education specialist, Sue Larkey, recommends ten key strategies which teachers can apply in the classroom to assist both, the child with ASD and fellow neuro-typical children. These include: learning about ASD, preparing the classroom and informing the other students how they can support one another (Larkey 2015).
Another useful, yet simple strategy to use is open and clear communication between parents and educators.
Some teachers can be dismissive of parental involvement as coming from an emotional and illogical area — but parents are at the ‘flash point’ of ASD. Teachers who interact and actively engage in positive communication with parents show anecdotal evidence of positive outcomes for ASD students.
Kelly has learnt that good communication is vital to success. She says, “We have established a system of communication with most teachers. Attending meetings with realistic expectations, both of staff and the child, is important…This system can be anything from a communication book to emails.”
Kelly can see the positive results when schools work together with parents to implement suggested strategies. She has noticed a marked improvement in her child which she attributes to the extra support the teacher has provided this year. She says, “The teacher has been using a mood check at the end of each activity to check in with my daughter about how she felt.” This ‘checking’ has allowed Kelly’s daughter to express her thoughts, rather than internalise them.
Ivanna agrees that when all parties actively engage in the child’s support, there is evidence of better outcomes. Both Mary’s and Kelly’s experience is evidence of this. Each child had specific and differing challenges. Individual learning plans were constructed for each, based on their strengths, weakness and fears and sensory issues.
The educational approach needs to be narrow enough to focus in on specifics, yet wide enough to encompass the spectrum — not an easy feat.
Primary schools are more inclined to allow parental involvement, and although, support strategies may vary or need constant refining, the parents have some level of input. This is usually not the case once the child attends high school, and parental involvement is reduced due to the school structure.
Interestingly, Mary has experienced fewer issues with her two oldest children who are in high school. She has found the staff to be more responsive and she has been communicating with the teachers by email. The teachers have also been pro-active and have called her on several occasions to discuss issues and how to best accommodate her children’s needs
Mary’s positive experience doesn’t seem to be an isolated incidence when it comes to secondary school. Although there is only anecdotal evidence available, of the 20 parents from The First Step group surveyed for this article, the general consensus was that high schools were generally more responsive to their child’s needs, with 13 out of 20 parents reporting positive relationships with the school.
Like Mary, these parents also noted that the high school experience was less stressful, than the primary school one. This could be in part because by the time a child gets to high school, parents are well-educated about their child’s specific needs and they may have learned better communication techniques to deal with difficult situations.
Throughout these discussions, one thing is becoming quite clear, and that is the need for open and regular communication between the teachers and parents. This is vital in ascertaining needs, creating structures and implementing helpful strategies.
Education support for ASD children requires a combination of government funding and continued teacher education and support. Teachers are under a great deal of pressure to accommodate a wide range of student issues and this is where governments must provide funding for specific training, teacher development and classroom support.
The government also needs to work together with organisations that advocate for people with ASD, such as Amaze and Asperger’s Victoria; and with individuals on the spectrum, such as Chris Varney. Chris runs the I Can Network, a mentoring and educational program for people with autism.
Chris Varney acknowledges the difficulty that educators have when it comes to learning an individual’s needs. He believes that educators need to focus on the positive aspects of ASD, rather than the negative ones, “The problem is few teachers are aware how to channel the strengths of children with autism.” (Varney 2015).
Although, progress is slow, change is happening.
A recent Senate report revealed what many parents have been saying for some time — that the education system isn’t coping very well with inclusion of children with ASD, and that there needs to be better teacher training (ABC 2016). The Victorian government has since advised that an independent panel will be established to resolve school disputes. The panel will cover a range of issues, most notably, inclusion, bullying, well-being and engagement.
When asked what her dream for the future of ASD education would be, Ivanna said, “In an ideal world the education system would provide an individualised, tailored and quality educational program that accounts for the development and needs of that child, and extends him/her sufficiently to explore and optimise all facets of their potential.”
 Mary and Kelly: names has been changed for privacy.