The Dangerous World of Marginalizing Autism Parents
By Nazreen Bibi
The term neurodiversity is often used to describe a political movement claiming to protect the autistic person’s basic human rights. So, initially I was keen on joining the movement and therefore thought little of sharing my views as a parent, using the #ActuallyAutisic hashtag, because of course my child is Actually Autistic.
Then I was told this hashtag is ringfenced for a subset of autistic people who can express themselves and that as a non-autistic parent I am barred from using it on my autistic daughter’s behalf. This childish rhetoric could have easily have been dismissed had I not seen how this nonsensical “we are real autism; we speak for autism” mentality harms parent/carers like myself and our severely autistic children.
It doesn’t take long to see the vast difference between autistic people who are social-media savvy, deliver speeches at events, write books, sell items online and engage in research — and the adult autistic child I love and care for at home.
At age 21 my eldest wears pads, suffers from epilepsy and communicates using one or two words, gestures and noises. She needs constant assistance to maintain her safety and wellbeing. Her capacity is limited; therefore, it is my duty as a parent and her carer to make decisions in her best interest. What is the possible validity of online autism communities claiming to be #ActuallyAutistic that exclude all those like her, who are obviously autistic?
These same neurodiversity groups are dangerous for other reasons. They often share harmful, libelous ideas which echo the evil Refrigerator Mother theory of autism. They divert discourse into meaningless debates over trivial issues such as the puzzle logo or the terms used to describe severe autism. They claim only articulate verbal individuals should have a role in guiding research. The censoring of voices like mine undermines my child’s mere existence, let alone the urgently needed parent-led campaigns which for years have been at the forefront of changing political, health and social care policies both nationally and internationally.
In addition, there is the noxiousness of a group of strangers online claiming to have better insight into your child than you do. The baseless idea that people can self-diagnose. The idea that autism research is only valid if the researcher is autistic. The ludicrous idea that autism is some quirky difference rather than a lifelong disability. And of course the Queen of All Repulsive Ideas: that there is no spectrum and that all autistic people can use online social media platforms and that communication is hindered only because the parent has failed to explore communication tools or that autism is a result of childhood trauma.
Marginalizing parent/carer advocacy/opinions and actual lived experience is a form of gaslighting which has a significant negative impact on our disabled children, whose very lives depend on the strength of our voices and our ability to to heard. We must always speak out, giving voice to the voiceless.
Nazreen Bibi is a mental health nurse, parent, campaigner and advocate based in the UK.
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.
