Reflections of autistic parents who home educate their autistic children

As part of my MA in autism I also did some primary research on the reflections of autistic parents who home educate their autistic children. I was interested in this topic as an autistic mother to two autistic children who both have been home educated when mainstream education did not work for them. It was noticeable when I got involved with the home education community just how many people were autistic, both parents and children. Mainstream education in its current format just does not work for some children. No other research had been done on this topic at all and I felt it was important that we tried to understand why so many autistic families end up home educating. There is research on home education and disabilities more widely but I was specifically interested in the views of autistic parents.

The research was a qualitative study using semi-structured interviews. Four participants were interviewed. The requirement to be a participant was that they were an autistic parent who had home educated their autistic child or children. The two main themes which I identified using content analysis were ‘health and school withdrawal’ and ‘school experiences’.

For every participant in this study the main motivator for school withdrawal was a significant decline in mental health and wellbeing. This was the case in my own personal experience and is consistent with other research on home education. Signs of stress such as ‘school refusing’, ‘meltdowns’ and ‘self harm’ were mentioned. One mum described the self harm of her five year old:

“He kept trying to put his fingers down his throat, he threatened to throw himself down the stairs and he tried a few times. He tried to throw himself into a stinging bush, a stinging nettle bush so that he could get out of going to school. Anything he could think of really, it was horrible, absolutely horrible.” 

Overwhelmingly the children’s school experiences were negative which concurs with the literature on home education. Parents described teachers dismissing their concerns, disbelieving diagnoses and not implementing support (even in two cases where it was recommended by an educational psychologist).

Every parent described a ‘last straw’ event which had followed a lengthy period of stress and trying to make school work. This varied from a disagreement over support (e.g. a flexi-school request being denied) to an extreme meltdown such as the following:

“One day they called me at (work) and said we just can’t calm her down and my dad wasn’t around so I drove there and it took me about an hour to get there and she was still in full meltdown when I got there.  She’d taken her clothes off, I didn’t even recognise her when I saw her, she was in a terrible state and the teachers had no idea what to do with her so I calmed her down and I called a crisis meeting … she couldn’t go back to that school because it was detrimental, it was damaging her … mental health and at that time she didn’t speak at home, she didn’t speak to anyone. She came home and she read, she didn’t function.” 

With regard to their own autism parents described situations where it had both benefited and hindered them. Some examples of benefits were empathising with their children’s struggles, good attention to detail (with reference to the paperwork for an EHCP) and not caring about breaking societal ‘norms’ (e.g. children should go to school).  Talking about the negative aspects one parent said she was told by a teacher that she appeared anxious – she perceived the implication to be that her anxiety was causing her children to be anxious. As an anxious autistic parent, I have also had this experience.

This was a very small scale project but gave some important insights into why some autistic parents home educate. It was not intended to be a representative sample of autistic parents. The participants came from a specific group who had ‘chosen’ to home educate. (We are down in government stats as people who have chosen to home educate but I do not consider it a choice – I was forced to home educate to save my child from PTSD or other serious mental health problems). There are autistic children who are happy and well supported at school but this project was not attempting to research their experiences.

My research showed what the majority of us in the home education community already know. Autistic children are heavily disadvantaged at school, they often are not given appropriate support and home education is an option that can keep them safe.