As a teacher, I am often referred to as a professional, but when it comes to autistic spectrum disorders (ASD) the real professionals are the parents. No one knows a child better than his/her parents or carers.
Soon after I started teaching in a special school for children with social, emotional and behavioural difficulties in Northern Ireland, I realised how important it is to have a two-way relationship with parents and how their insight can benefit me in my daily practice. With this in mind, I recently carried out a small research project into the experiences of four parents. Using semi-structured interviews, I set out to understand how they view the education of their children with ASD.
Each parent provided a unique insight into their child’s life from diagnosis with ASD onwards. One parent’s son was diagnosed with Asperger’s syndrome (AS) when he was six years old. This diagnosis came about because the parent asked the school principal for an educational assessment. It only took six weeks to get an assessment, which was carried out over a number of different sessions by an educational psychologist. Following this, the child was fast-tracked, bypassing the GP, and diagnosed by a paediatrician.
Another parent’s five-year-old son was also diagnosed with autism by a paediatrician, though this was after the parent had battled to get help for more than two years. The third parent’s son was missing developmental milestones, with no functional speech by the age of four, so the parent got services involved. He was subsequently diagnosed with AS at the age of ten by a psychiatrist and educational psychologist. The fourth parent has two sons, one diagnosed with high functioning autism at the age of six and the other with autism at the age of three and a half.
All four parents said that if they did not have some knowledge of the process, or the intellect and drive to push for help, they would have struggled to get a diagnosis as soon as they did.
Each parent said that it is vital for teachers to be understanding, adequately trained and willing to accept their child. Three of the four parents expressed great satisfaction with their child’s primary school experience. Interestingly, the parent with two sons on the autistic spectrum placed one into a special school and the other into a mainstream primary school, with very different results. The parent found the special school to be “fantastic”, with very knowledgeable and experienced teachers, compared to the mainstream one. “The school didn’t suit his needs”, the parent said. “This resulted in him being out of school for some time. He was then integrated into a smaller school with a classroom assistant.”
The transition from primary to secondary school is a vital time for children with ASD. Not only can the increase in the size of school create potential issues, but having to move around from one class another can be like a minefield for the child with ASD. One child in the study had a very bad experience of transition. Despite the existence of a transition plan, and several visits to the school, the secondary school told the parent that they could not cater for her son only eight weeks before the placement was due to commence. “By 30 August we were no further forward and I was extremely stressed and spent hours crying as I had to lie to my son to protect him”, said the parent.
The school eventually backed down but by the end of her son’s second day there, the SENCO had called home and told the parent that her child was psychotic and that he was to be taken home. Despite offering to help the SENCO understand the issues involved, the parent’s attempts to provide advice and practical help were ignored.
Another parent also had a negative experience of moving her child into mainstream secondary education. She noted that no transition planning took place and that some teachers didn’t understand how literal and how routine orientated her son could be. “It took me to go in and really push for certain things”, she said.
However, a parent whose son was about to enter the social communication unit of a mainstream secondary school at the time this research was conducted had had a very different experience. She felt she had benefitted from a lot of communication with the new school and that the family had been included in the planning process.
All four parents believe, though, that teachers do not have enough training on autism related issues. Three of the four parents specifically said that teachers need more training and the fourth parent, who is also a teacher, had not received autism specific training himself. He did find, though, that his son’s primary school teacher was very well trained on this issue.
One parent believed that there is too much emphasis on inclusion and not enough on the individual child’s needs. He said that some teachers have no interest in working with children with SEN and no knowledge of how to do it. Another parent said that approaches to inclusion seem to depend on the individual child, the teachers’ attitudes and the overall ethos of the school.
While one parent’s experience of inclusion had been very positive, she felt that teachers had to be well motivated and that the school must be effectively resourced to make it work. The other parent studied felt that the use of individual units attached to mainstream schools was the way forward and that this was the “only inclusive strategy.”
Finally, I asked the parents to give me, as a teacher, some advice when working with children who have ASD. Here are some of their responses:
“Think outside the box, try and understand the child and their particular needs and take as much advice from parents as possible.”
“It is hard enough for a parent getting the news that their child has autism...be sensitive.”
“Look at each child as an individual and do not presume the child’s capacity to do certain things. Get to know the child, understand them, gain knowledge and speak to the parents.”
This very small scale study is obviously anecdotal in nature, but it is telling that all the parents involved felt that there is a general lack of knowledge and understanding about autism in secondary education, although they did identify individual teachers who try to understand ASD. The value of including parents in decisions, and seeking their opinions and advice, is also clear to see. After all, parents are the real experts when it comes to their children.
This article is based on research conducted by Craig Goodall alongside study for his Masters Degree in Autistic Spectrum Disorders at Queen’s University Belfast: