I will preface this by clearly stating that I have no issue with parents of autistic kids. It would be rude — and foolish — if I did, considering that a lot of my advocacy work is with parents. I recognise the vital role parents have in supporting their kids to grow to be strong and fulfilled autistic adults. Parenting can be very difficult and parents usually do an amazing job. This letter relates to a small subset of parents within the world of autism…
I was in conversation online in response to a post about a TV program featuring a pretty triggering and disrespectful portrayal of an autistic child and his family. It looked like one of those things showing an autistic person being overloaded and aggressive — very emotive, negative and not dreadfully helpful for anyone, particularly not for the kid featured in the show. My comment said, “Among other things, this kind of television sets back the cause of autistic pride and empowerment.”
This received a fair amount of comments, including several from a parent who it would appear was having a tough time. The last comment from them that I saw was “Autism is just suffering. There is no pride in my son’s autism.”
Despite being a bit affronted to have my comment dismissed this way, I could see the parent was in a bad place and felt for them. After the initial shock of that response I started to ask myself some questions about this parent and their child. Had the parent communicated with their son about his perceptions of himself and the child had expressed life was just suffering in misery, in whatever way he could? How old was the child? What experiences of life has the child had — was he subjected to damaging ‘therapies’ more designed to make him not look obviously autistic than actually support his development or did he get tailored support from people trying to help him achieve his potential, whatever that may be? If he does not use verbal speech, had the parent arranged a means of non-speech communication like ProLo2Go or did he have no way of communicating his wants, needs and thoughts? The answers to these questions, in my mind at least, would help understand the child’s experience of life and also the parent’s views about autism just being suffering.
As long as I have been advocating — since 2005 — there has been a dichotomy, a division between autistic advocates and what are sometimes called ‘martyr parents.’ I am unsure if there is an official definition of a martyr parent but the way I usually experience them as an autistic person is being told “My child is really autistic, not like you” or “You don’t speak for my child, you are ‘high functioning’.” The thing I often see is that parents in this group see autistic adults as ‘the enemy’. To my mind, supporting families and supporting autistic pride and empowerment are not mutually exclusive. In fact they tend to complement one another.
I do understand that for many people being autistic — and parenting an autistic child — can be very challenging. Gee, I am one of those people a lot of the time! However, I do not accept the idea that autism advocacy is somehow belittling parental experience. When I started my advocacy journey, the martyr parent phenomenon was a lot more common than now I think. It certainly made the Q&A after my presentations interesting! The interesting thing is that now there are many parents who have a difficult time raising their autistic children, for a range of reasons, who are very focused on building autistic pride and empowerment with their kids.
There are some people doing amazing things around parenting and presenting their autistic kids in a positive light. The blog and short film ‘The Life of Reilly’ were created by the mum of an autistic child called Reilly who is non-verbal and has high support needs. Where some people might focus on how ‘autism has ruined my life’, Reilly’s mum publicly shows the love she has for Reilly. Autism is not viewed as a curse or a burden in Reilly and his family’s world, but as an attribute, part of what makes him who he is. Raising Reilly has provided some challenges for his family, as does raising a lot of children. Some of the measures Reilly’s mum has put in place to support him to reach his potential include accessing therapies, enrolling him in a sensory activity centre, advocating with local services to ensure he gets access to what he needs and including him as any child should be included…oh an making a short film with autistic actors and consultants too, although I think that falls under the category of going above and beyond the call of duty!
Here is a link to the blog The Life of Reilly — I strongly suggest having a look https://thelifeofreilly.org To the person who tells me ‘my child has high support needs therefore they are a burden’ I would point them in the direction of Reilly’s family.
I often feel like the ethos of being a martyr parent is based in ‘autism’ being the enemy. Just think of those memes that used to circulate around the internet saying ‘I kicked autism’s butt’. ‘Kicking autism’s butt’ is potentially very problematic. Autism is part of neurology, which means it is part of how someone’s brain is wired, a part of what makes them who they are. Kicking autism’s butt is essentially kicking an autistic child’s butt. The ‘enemy’ model of autism seems to require that the child has no means of communicating with the world in order to work. Showing film footage of ‘problem behaviour’ is just another step along that line. Publicly humiliating an autistic person in this way seems to come from a place where they are viewed as less than human.
The martyr parent attitude really concerns me. I worry that kids in these families may never be able to form their identity in the face of all the negativity and blame. Maybe the reason my comment today on autistic pride was so challenging for some people is the idea that a person who is proud and empowered is going to grow in identity and strength and may challenge the idea that they are a ‘burden’ and the negative way they have possibly been viewed all their life.
Parents usually want the best for their children. I hope that parents described in that ‘martyr’ mould can give a little bit and start to see their autistic children in a sympathetic light, not as a burden or negative part of their world, but as the people they are, along with all the challenges and the great gifts that they bring. No longer seen as harbouring the ‘enemy’ of autism but as treasured, respected and included members of the family, as so many autistic children with all sorts of different needs and experiences in other families commonly are. I am fairly certain that if this were to happen, the kids seen as causing ‘martyrdom’ and their parents would be much better off.
About Jeanette Purkis
Jeanette Purkis is an autistic author, public speaker and autism advocate who also has a diagnosis of bipolar disorder. She has worked full-time in the Australian Public Service since 2007 and has a Masters degree in Visual Arts. She is the author of three books on elements of autism and hosts an internet radio show. Jeanette has presented at TEDx Canberra in 2013 and at many autism events and conferences, including alongside Temple Grandin in 2015. Jeanette has been facilitating a support group for women on the autism spectrum in Canberra since 2011. Jeanette was the 2016 ACT Volunteer of the Year and a finalist in the 2017 ACT Woman of he Year awards. She lives in Canberra, Australia.