A good friend of mine who is the mum of one of the young women I mentor asked me to write this piece after she had witnessed another parent of an autistic teen post negative things about their child on social media without the teen’s consent. The content was something I can imagine the young person would have found monumentally embarrassing.
Sadly if I recounted every instance where someone who should be a responsible adult belittles an autistic child or young person who is standing right next to them it would make quite a long and unpleasant book. This stuff is sadly so common. Once I sat next to a mum and young autistic boy at an autism awareness morning tea I was speaking at. I heard a friend of the mum exclaim quite loudly ‘Oh you’re lucky. You only have one of three on the spectrum’. Quite how I didn’t name and shame that woman from the stage when I spoke was beyond me. That young boy heard it and I can only imagine what it did to his self-esteem and his sense of pride in who he was to be singled out as the worst of his siblings due to his autism.
On another occasion, very early in my advocacy career, I gave a talk at the annual general meeting of an autism support organisation. After my talk I found myself in conversation with a woman and her very quiet adult autistic daughter. The mum said quite loudly to me ‘My daughter doesn’t have any friends. How can I make her get friends?’ I must admit a few ideas went through my mind, many of them involving the mum moving to a different state from her daughter!
While these are quite clear cut cases of unhelpful parental behaviour, there is a wide range of these sorts of things. People posting their child having a meltdown on social media, people talking to their friends about embarrassing or apparently odd things their autistic child does while this child is standing right next to them are at the extreme end. Many of us say things in an argument that we regret, but that is quite different to this sort of invalidation and belittling and in fact, I think the two sorts of behaviour come from a different place.
Belittling and invalidation by parents seems to stem from a lack of seeing their autistic children as an individual with their own feelings, needs and personality. I think this negative behaviour often comes from a predominantly negative perception of their child. It seems like a manifestation of the idea that the autistic child is responsible for all the parent’s stress, misery, difficulties and inability to socialise or do other things they enjoy. The usual parental response is to support, care for and defend their child against attacks from others. For the ‘shaming’ parents, the opposite seems to be the case – like they take on the world’s judgement of their child. I imagine this behaviour may be committed by people with a lack of insight who truly believe ‘autism’ is responsible for all their family’s problems, but the impact on their child can be severe.
This is not entirely the fault of the individuals. We are all part of a society and ours is one which is very focused on deficits around autism. We have anti-vax charlatans preaching essentially the idea that your child’s death would be preferable to them being autistic, public figures making unhelpful, blaming statements about autistic people and a culture where autistic experience and perception is shown as weird, nerdy and largely undesirable. These are social constructs which impact on all of us, including autistic children and their parents. It does not excuse the behaviour but provides an additional way to address it.
In terms of the impact on autistic children, if you are being subjected to bullying at school and struggling with attendance and subjects, you want the adults in your life to support and defend you and not contribute to your stress with invalidating, disrespectful comments. Parents occupy a place of trust. It breaks my heart when autistic children are not able to feel supported by their parents and lose that trust relationship with those who should be ‘in their corner’.
As an autistic person, I really understand how difficult autism can be and especially for kids who are just starting out in life. I know parenting autistic kids is often challenging, but I also know that we are sensitive people who want to please the people we care about and that belittling and invalidation from a parent may well stay with us forever. I wish people who behaved like this would just stop and think how they would feel in their child’s situation and adjust the message accordingly.
It can be very hard to call out this kind of behaviour in parents that do it. Most parents do not welcome unsolicited parenting advice so any attempt to speak about the behaviour with them can backfire. One thing you can do is step in to support the child in a positive manner which challenges the parental messaging in a non-confrontation way. Giving the child an affirming statement is often helpful, or showing them you experience things like they do. For example if a child gets put down due to responses to sensory overload like covering their ears, you can cover your own ears at a loud noise (and in my case I probably would anyway!) it sends a message of support to the child and challenges the parental invalidation. I think showing solidarity with the child can be very useful, for one thing because you are being their ally, on their side.
I have seen invalidation and belittling of kids when they are standing right next to the parent for many years. I will say that since 2005 when I first started working in this area it does seem to have become less widespread. I think the thing which will really spell the end to problematic, invalidating parental behaviour is a change to how society views autism. A lot of the issues seem to stem from the idea that autism is a tragic affliction rather than a neurological difference. When we get rid of that thinking then I think this issue will change.
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.