As part of my MA in autism I did some primary research on autistic parenthood. I am in the process of preparing this for publication but for now here is a short summary.
I completed a qualitative study with 6 autistic parents as participants and I interviewed them to get their perspectives on the pros and cons of being an autistic parent. The word interview is used quite loosely – I did not just offer a traditional face to face research interview, I wanted the autistic person to be able to communicate in the way that worked best for them. Two of them chose a written format.
Why I chose this subject?
If you google autistic parenthood you mostly find links about being a parent of an autistic person. The same applies if you search the academic literature – there is so much research about how hard it is to be a parent to an autistic child (not so much from the child’s perspective unfortunately). There was some research happening in Cambridge (now published; Pohl et al., 2020), I had a PhD thesis by Burton (2015) and that was pretty much it for my literature review so I had to look at more general literature about being a disabled parent. I know of a PhD that is currently being done on autistic motherhood (by Paula Sanchez) and I was a participant in somebody’s PhD research about autistic parenthood at the university of Sheffield so hopefully we will see more published soon.
Apart from the dearth of research on the subject and the obvious need, the other reason for my interest is because I am an autistic parent and my experience does not fit at all with the stereotypes you hear about autism and parenting. Mostly people assume we make bad parents and it certainly is not true in my case or for many of my friends. I wanted to make sure my research explored both the positives and the negatives of being an autistic parent.
I won’t post detailed results seeing as I am planning on publishing them but there were some key themes which I will mention.
Every participant had had negative experiences with professionals. One mum had been accused of fabricating and inducing illness in her children (used to be called Munchausen’s by proxy). It was nonsense and the mum was later fully cleared but the stress of it was immense and had terrible consequences on the whole family. Since doing my research I have come across many other mums (it is almost always the mum) that have also been accused of fabricated and induced illness (FII). Three parents were concerned about losing their child(ren) at one point. Only two parents had had any positive experiences with professionals. The relationships with professionals were extremely concerning.
Empathy was an important positive for the autistic parents. All had at least one autistic child (this was not a pre-requisite of participating but it is not entirely a coincidence either as parents often realise they are autistic because of a child’s diagnosis). I would be interested to know if the fact that their children were autistic was why empathy was considered as a positive. It surely must be much easier to empathise with (e.g.) a child having a meltdown if you have experienced one yourself. Research on this and Milton’s (2012) double empathy problem would be interesting.
An area where these parents seemed as though they would benefit from support was executive functioning (an umbrella term for a number of cognitive functions such as planning and organising, impulse control, working memory). Some autistic people do not have executive functioning difficulties, it isn’t a core part of autism as such. Many of us do struggle in this area though. Whether this is because we are autistic or because of the many things that can co-occur with autism, no one really knows. Stress, anxiety, lack of sleep can all be responsible for cognitive problems. I have muscular dystrophy (apparently this co-occurs with autism though I still only know children with both – no adults). Myotonic dystrophy (the kind of muscular dystrophy that I have) can cause ‘focal dementia’ which increases with age – so that is another likely reason for my executive dysfunction. Lots of us have ADHD or dyslexia too. At the end of the day it does not really matter why some of us have these difficulties but once identified it would be great if there were some support available.
The write up of this research is currently being prepared for publication (EDIT: It has now been accepted for publication in May 2021). It was a 12k word dissertation and I need to get it down to only 4k for the journal in which I would like it to be published. I have spoken about it at conferences or at workplaces (e.g. a CAMHS department) quite a lot already. Get in touch via this website if you think a talk would be useful at your workplace or conference.