Being told that your child is autistic can be an incredibly challenging experience for parents. There are myriad questions that need answers, perhaps fears for the future, and issues in the present that need addressing. It can be confusing, isolating, and frustrating.
Ensuring that parents have a voice in the steps that happen next is essential. Listening to and understanding their concerns, fears and anxieties will greatly ease their path. Yet despite the efforts of many schools, parents are still finding it challenging and even traumatic to carve a path ahead for their autistic children.
Facing a battle
LB’s oldest son was two, almost three, when he was diagnosed with autism and speech and language delay. She explained, “It has been a few years since we were awarded my sons EHCP. He was 4 years old, and has been in specialist education since reception. He is now 10 years old and in year 5 and has stayed in specialist education, even when we relocated from the south to the north of the country two years ago.”
As LB’s son had already been diagnosed under the NHS, getting the EHCP was a little easier, yet still challenging. “There was still a requirement for me to push the Local Education Authority as much as possible, with support from the nursery he attended. We managed to get the school we wanted but it felt like a lottery with over 100 applications for 30 places. Things have only got more challenging for parents.”
Jane de Vos, whose seven-year-old son is autistic, experienced similar difficulties. She explained, “It often felt like a battle of teachers versus parents in the struggle to be heard by the authorities. And I had to really escalate to senior management for our case to be treated seriously by the setting. Despite our efforts to advocate for our child, the process of obtaining an EHCP and securing a suitable school placement felt like an uphill struggle. It took years of perseverance to finally get the attention and support we needed.”
In terms of parent voice in the processes that LB and de Vos experienced for their children, there is clearly still work to be done. LB said, “You do not get a voice as far as I knew. Yes, they ask for you to fill in part of the form, but the LEA did not share when they would be ‘deciding your child’s case’ as only professionals are allowed. I found this shocking, because right from the get go, the parent and what the parent knows about their child is shut out. I am lucky that I can write well enough to put my case across in writing, but not all parents are like that for many reasons which means their chid might end up missing out on much needed support. In these decisions, more emphasis is given to the nursery or school as well, and if they are not on board with an EHCP application, usually this means it is declined and the parents’ views are effectively dismissed in favour of what the nursery/schools believe.”
The importance of parent voice
When parent voice is taken into consideration the impact can be powerful. de Vos said, “When our concerns are acknowledged, it's like a weight has been lifted off our shoulders. It's reassuring that our efforts and advocacy have not been in vain, but I did have to engage a specialist consultant to help me advocate our case with the authorities and the school to get traction. Feeling heard empowered me to keep going and I have found that the specialist school staff are much more approachable and willing to discuss my child and their progress.”
LB added, “It is very important to know that you have been heard but I have to be honest, at this point, as a parent with a child with SEN, it means very little. Since moving we now access a specialist school setting that goes from reception to 6th form. This is truly amazing and means our child will stay in this setting that he is comfortable and familiar with until he is an adult. So in that sense it really is like a dart board in terms of what SEN provision there may be moving from county to county.”
Processes and procedures in local areas can be both a help and a hinderance when it comes to ensuring that autistic children can access appropriate education settings. For LB, this was made clear in their move from one area to another. She explained, “We knew the date we were moving and when my son would need to start attending school months in advance. We did tell our new education authority and were told in no uncertain terms that they would not look at my son’s EHCP or sort out potential schools until he was physically living in the county. This made it an extremely stressful and worrying experience once we did move. We were very lucky, and I cannot stress this enough, in that a child moved from a specialist school the week we moved and my son was offered a place in the school. My son only missed one week of school in the end, but we are never moving again!”
Many parents of autistic children speak of the need for specialist education to be better funded. There is often acknowledgement of how great specialist education is when it can be accessed, but many parents feel this is a lottery.
Active listening
For LB, there is a crucial difference between specialist and mainstream experiences as parents. She explained, “Mainstream schools need to understand that usually parents will know much more about whatever special educational needs their child might have in AND out of school (where behaviour can be completely different) - even if this is pre-diagnosis. My son goes to a specialist provision and they NEVER dismiss the parent voice at any stage and actively encourage parents to share what is happening at home that may impact a child’s behaviour at school. Mainstream schools can learn from this. More than anything however, the LEAs need to ensure that the parent voice has, at a minimum, equal weighting to that of any other professional. Maybe that will lead to a trickle-down effect into schools.”
One thing that has supported de Vos in her experience with her son is connecting with other families facing similar challenges. “This has been a tremendous source of support,” she said. “Additionally, access to resources and information about our rights and available support services has helped us to navigate the system more effectively but I only found things out later on after joining parent Facebook groups rather than getting the information from the school or the local authority.”
Practical support
Seeing autistic children as part of a wider family is also supportive to parents. Mrs de Vos said, “Having dedicated support for us as a family, including training and resources for siblings, would ease the stress and the emotional rollercoaster associated with the EHCP process and school placements. I would advocate for a more collaborative approach between schools and families, where both parties work together as partners in the education journey for the child. This could include training and support not only for teachers but also for families and siblings on how to effectively navigate the complexities of special education. There should be greater transparency and accountability within the system to ensure that parents' voices are valued and respected - I have had great relationships with the TA in one school but not the main staff as they had so much to do with their class sizes I felt like a burden to them.”
Fostering a culture of collaboration and partnership with parents, rather than an adversarial dynamic is key. “They made me feel very small,” de Vos said, “and that I was too emotional in the process of getting my child the right support. This could involve providing regular communication channels and opportunities for open dialogue between teachers and parents. Creating a welcoming and inclusive environment where parents feel valued and respected for their input is crucial for facilitating parent voice in the education system, not just an annual meeting to update the EHCP to tick boxes.”
Time and again parents have to fight for their autistic children to receive the education they are entitled to. LB said, “It’s exhausting, disheartening and demoralising. Our fight was against the LEA but often it will be against the school that a child is attending, which I can only imagine is a hard thing to deal with.”
The clear message from parents of autistic children is heartfelt. When they are listened to, and credence given to the knowledge they have of their children, everything is easier. However intransigent the wider issues in the world of specialist education for autistic children may be, giving parents a voice, and actively listening to it, is one thing we can do.
About the author
Elizabeth Holmes
After graduating with a degree in Politics and International Relations from the University of Reading, Elizabeth Holmes completed her PGCE at the Institute of Education, University of London. She then taught humanities and social sciences in schools in London, Oxfordshire and West Sussex, where she ran the history department in a challenging comprehensive. Elizabeth specialises in education but also writes on many other issues and themes. As well as her regular blogs for Eteach and FEjobs, her books have been published by a variety of publishers and translated around the world. Elizabeth has also taught on education courses in HE and presented at national and international conferences.
