*This blog post is not parent shaming. It’s critiquing the documentary*
This Wednesday on BBC one, there was an incredibly high-profile autism documentary in the UK. Naturally, being an autistic person living here, I was curious but extremely cautious about the documentary. I was cynical before watching it, as autism is frequently misrepresented in the media in a harmful way. Knowing that millions of people would be tuning in, I was very concerned about the message that could be portrayed and how this would impact the general public’s views and consequently autistic people in their daily lives in the UK. Below I’ve summarised my key takeaways from watching this documentary.
Sharing without consent
This conversation comes up a lot in the autistic community as we’ve seen countless times autistic people having their health and medical concerns shared publicly without their explicit consent. In the ‘Our Family And Autism’ documentary, all three children’s diagnoses were disclosed (at an age where they couldn’t provide informed consent) along with other details regarding their medical history. I am aware that the intention was to improve understanding of autism; however, it’s essential for some individuals not to broadcast that they are autistic to the world. It’s the autistic individuals right to decide if and when they share that information.
However, the children don’t have that choice now, and it’s more concerning to me that the whole world knows they are autistic, but they don’t. For me, I know that I would’ve been furious if the national media shared my diagnoses before I knew. I have to wonder how the children will feel about this as they grow up and learn that they’re autistic and that the world knew before they did.
Online countless autistic people share their experiences of what it’s like to be autistic through their free will rather than carers doing it on their behalf without their consent. So there is no lack of autistic people willing to come forward. I would’ve felt more comfortable if consenting autistic people were sharing what it’s like to be autistic to help improve understanding of autism. Although this in part was achieved as they did interview some autistic people and Christine later discovered that she was autistic herself, it did feel like the neurotypicals speaking over autistic voices. To me, that was a missed opportunity.
Communication and double empathy
As an autistic person, it was difficult to hear about Paddy’s reaction to the idea of autism at first. Especially when he implied that his children’s autism contributed to his depression. Growing up, many of us felt like we were burdens and we were less than other children because we’re not neurotypical, and that’s what it felt like listening to Paddy. I don’t know what else was going on in Paddy’s life during that time, but autism is part of us, and if not careful, your child can start blaming themselves for their parent’s depression even though it’s not their fault. The health, social, and education systems are a nightmare to navigate if you’re not neurotypical, and I could certainly see how that could be depressing, but that is not the child’s fault. Although Paddy seems to be in a better place now in terms of understanding autism and what that means for his children, I question how his children may feel about his statements if they watch this documentary in the future. He does acknowledge that he now accepts autism is a part of his children, which also brings positives to his life, but that doesn’t change the implication he made before about the cause of his depression on TV.
For me, this is also a classic example of a double empathy problem. Where autistic and neurotypical people struggle to understand each other, and autistic people don’t just have communication deficits. Paddy talked about not knowing if his kids or ever love him because during their diagnosis, he was told that autistic people could “struggle understanding emotions”. However, in the few brief clips, we saw Paddy interacting with his children; I could see his kids showing clear affection. Perhaps this is because I’m autistic too and recognise how love can be communicated in an autistic way that’s harder for Paddy to see because he’s not autistic. Autistic people certainly experience emotions, but many professionals claim we don’t understand feelings because we don’t express them in a neurotypical way. I feel the professionals did not communicate to Paddy about autism and emotions properly during a diagnosis.
Christine’s response was different, and she seemed to understand the kids loved both of them, and their autism was why they were not communicating it in a typical way. However, I suspect this was easier for her to see this because she is autistic (more on that later) and does not experience the double empathy problem when interacting with her children.
Out of date knowledge
Some examples include:
- Functioning labels rather than support needs.
- The autism spectrum is a linear scale rather than a circle.
- Mainly autistic girls mask.
Although they stated “some boys mask”, they didn’t address the broader problems of gendering autism. Then again, it’s the BBC, and I think we’re all aware of the transphobia coming from the institution at the moment.
The University of Cambridge and Simon Baron-Cohen
Because it’s not a mainstream autism documentary without Prof Simon Baron-Cohen (sarcasm), it was frustrating for me that Simon was featured because he has a long history of problematic views that have dominated academic discussions about autism. Also, his current Spectrum 10K study could easily lead to eugenics. He speaks as a voice of authority about autism and now suddenly claims to view autism from a neurodiversity perspective. However, his research and professional interests certainly conflict with the noises he’s making about neurodiversity.
For me, a highlight of the documentary was seeing Christine discover her autism and receiving her diagnosis. Receiving a diagnosis in adulthood myself, I could certainly relate, particularly when she said, “I’ve Faked a lifetime”. I felt like that before getting my autism diagnosis too. Also, I related to her experiences with food and sensory processing. To me, this part of the documentary felt authentic and was the only part where an autistic voice was centred when speaking about their autism.
So, what are my final thoughts about this documentary? It wasn’t a dreadful documentary, and there was the intention of acceptance and understanding autism rather than just awareness. However, there were issues about consent and how autism was talked about at times. Ultimately this documentary would’ve been improved if autistic voices were centred throughout and at their own free will.
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One thought on “My actually autistic perspective on ‘Paddy and Christine McGuinness: Our Family and Autism’￼”
Part of me wants to watch this out of curiosity, only because Christine mentions her own diagnosis. I’m not sure when was the last time a parent made their diagnosis public on TV. But at the same time, outing children without their consent is unforgivable, yet so commonplace.
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