Hello, and welcome back to The Autistic Writer. Guess what most of the talk has been about in the UK autistic community over the last couple of days? Yes, it’s the BBC documentary, Paddy and Christine McGuinness: Our Family and Autism. I voiced my fears about this TV show before it aired, and some people felt I should be quiet and just give it a chance. Well, I gave it a chance. I watched it intently. And my fears were confirmed. Here, I want to give my thoughts from a very specific perspective. My concerns over the show are centred around what messages will be taken from it by (mainly neurotypical) people who didn’t know much about autism to start with. Why should I be bothered about that, you may ask. Well, it’s this simple principle, that I’ve often discussed: People pick up ideas from the media, and then help spread those ideas through conversation, social media, and so on. If people don’t already have a good knowledge of a subject (autism, for example), they will often accept at face value what is being told to them by so-called experts, and by people who might not be experts, but are closely involved with the subject matter. The McGuinness documentary did trot out some alleged experts, and of course the McGuinness family themselves are closely involved in the subject of autism. Also, both Paddy and Christine McGuinness are minor celebrities in their own right; Paddy is a well-known TV personality and comic actor, whereas Christine has a history in modelling. Fame and celebrity shouldn’t really have a bearing on public perception of autism, but we all know that when someone with a public profile says something, the public lap it up, regardless of its objective worth or accuracy. Worse still, people often absorb the message incompletely, or misinterpret it, or just not understand it, and then repeat it or share it inaccurately, and before you know it, Chinese Whispers has kicked in. The vast majority of information about autism in the documentary was either inaccurate or misleading. As viewers come away and talk about it, post about it, and tweet about it, the inaccurate information gets transformed and with faulty repetition drifts even further from the truth. This is how autism myths enter the public consciousness. Before I talk about why so much of the documentary was damaging to public understanding of autism, let me say a few words about the stars of the show, Paddy and Christine McGuinness…
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Paddy and Christine seem like lovely people; genuinely nice, and absolutely committed to each other and their kids. They seem to have a great relationship, and obviously dote on their children. I don’t have a problem with either of them in the general sense. I do, however, feel they don’t have a great understanding of autism, even though they are raising three autistic kids. It’s not their fault they are lacking in some of the finer understanding of autism issues; the vast amount of misinformation about autism in the media is overwhelming, and it’s easy for the unwary to be misled. But it’s disconcerting that people with such a vague grasp of autism issues are putting a high-profile documentary out there. It’s worrying, too, that Paddy and Christine have become involved with the Spectrum 10k project, which is headed up by Simon Baron-Cohen, who appears in the documentary.
The Spectrum 10k project is despised by almost all autistic people who have heard of it, and with good reason. Nationwide protests from autistic people resulted in the project being paused. It has now resumed, but is under investigation by the NHS’s Health Research Authority. If you are unfamiliar with Spectrum 10k, you can read my thoughts on it here. Simon Baron-Cohen is widely regarded as one of the world’s leading authorities on autism, and has made a great deal of money in a glittering career of writing and talking about the subject. But he has his critics both from other experts in the field, and from almost every autistic person who has become familiar with his work. Autistic people widely believe Baron-Cohen is a damaging influence on public perception of autism, and that he actively dehumanises autistic people. You can read more about this here and here.
It’s not possible in the space of a single blog post to forensically examine every element of the documentary, but I think I can make my point just by picking out a few key points that disturbed me the most. So, come with me for a look at the utter carnage wrought by an innocent documentary about two loving parents hoping to raise awareness about autism…
The Myth of Absence of Love and Low Empathy
One of the most upsetting parts of the documentary came when Paddy questioned whether his autistic kids would be able to understand love. Would they understand how loved they were? Would they understand what love is? This feeds into one of the nastiest and most persistent myths about autistic people there is; the myth, for which Simon Baron-Cohen bears much responsibility for spreading, that autistic people lack empathy. And empathy, of course, is a prerequisite for understanding the emotional state of love. If Paddy has been told by a paediatrician that his children might struggle to understand emotions, then you can forgive him for being worried. But this is precisely why people should check their facts about autism, and not just believe what someone, even a so-called expert, tells them. I’m autistic, and I can tell you I do understand emotional states, I know when I’m loved, and I feel love very deeply indeed. In fact, many autistic people experience emotional states more intensely than neurotypicals. My son, an adult, is autistic, too. We have a fantastic relationship, and love each other to bits. But there aren’t millions of TV viewers watching my relationship with my son. There aren’t millions of TV viewers seeing me when my heart has been broken because of a failed relationship. The millions of viewers are watching Paddy McGuinness biting back his tears. Yes, his wife disagrees with him, and assures him the kids know they are loved, but the dramatic moment that pulls the heartstrings is all about Paddy’s worries. The message that all too many viewers will take away is, Autistic people don’t feel love, and so the dehumanisation of autistic people continues.
The Myth of Extreme and Mild Autism
Paddy goes on to voice concerns about the “extreme” type of autism and violence. This is pretty horrific for any autistic person to hear, as it encapsulates two awful misunderstandings of autism in one. Firstly, there is no such thing as extreme autism, or mild autism. Paddy seems to be talking about his interpretation of the autism spectrum, on which at one end, some people are “extreme”, and at the other, are only “mildly” affected by autism. But this is a gross misunderstanding of the term spectrum in relation to autism. The spectrum does not refer to a mild-to-severe autism continuum; autism doesn’t work like that. The spectrum is a vast array of autistic characteristics that are dynamic and ever-changing within each autistic individual. Separate autistic characteristics can present more or less intensely in different people, but they are not static within the individual. I sometimes jokingly refer to myself as being more autistic on certain days, but that’s not an accurate representation. I’m totally autistic all the time, but my autistic characteristics can vary in intensity of expression by the day or hour.
The spectrum is more like this:
Most people simply do not know what the term autism spectrum actually means. Secondly, Paddy’s talk about extreme autism and violence feeds into a myth that seems to be becoming more prevalent: that autistic people are dangerous. It’s remarkable every time the media reports on a case of violence, like a serial killer or a terrorist, there is speculation about whether the killer is autistic. There is literally no evidence to support the notion that autistic people are more violent than neurotypicals. It’s simply not true. In fact, autistic people are more likely to be victims of violence, bullying and abuse than neurotypical people. But the media, and specifically the McGuinness documentary, don’t let facts get in the way of a good story. All too many viewers will take away the message, Autism makes people violent.
Interlude: A brief message
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The Masking Mistake
At around the ten-minute mark in the documentary, Paddy introduces two “experts”, and the discussion turns to autistic masking. The peculiar thing here is that one of the experts indicates that autistic girls are more likely to mask than boys. “It does happen with boys too,” she says, “but less frequently.” This is a ridiculous statement, and has all the hallmarks of being an off-the-cuff opinion with no relation to the real lived experience of autistic males. I have lost count of the times I have come across autistic males sharing their thoughts and experiences of their autistic masking, and the burnout it has led to. It is something we, autistic males, recognise and understand; the pressure to conform and fit in, and the exhaustion it generates. There is no justification for saying boys mask less than girls; all boys feel the weight of social expectation and pressure. To dismiss this risks parents misunderstanding what is going on with their autistic boys, and not recognising the internal struggles and pain that we learn very quickly to disguise. Make no mistake; this ridiculous statement from an “expert” risks harm to autistic boys as a result of encouraging parents to think their autistic sons are not hiding things they actually desperately need help with. All too many viewers will take away the message, Boys don’t really do much of the masking thing. We do. Trust me, we do.
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Paul “Headlock” Scholes
Later in the programme, Paddy talks to retired Premier League football legend, Paul Scholes, who has an autistic son. Scoles describes some of the behaviour of his son, and tells Paddy how he once had his son in a headlock to get his hair cut. Yes, you read that right; he had his son in a headlock. I’m sure Scholes is a devoted father, who loves his son dearly. But there is no excuse or justification for physically restraining a child in a headlock to ensure they get a haircut. If an autistic child finds it too traumatic getting their hair cut, probably because of sensory overload, then let them grow their hair. Let them grow it long. Really long, all the way down their back, if they want to. What will it hurt? The chances are that the kid will get fed up of it being too long at some point, and in a calm moment ask for a cut. And because they are in control of that situation; actively making their own decision to get the cut, they will find the sensory overload easier to deal with. You do not put an autistic kid in a headlock and force them to have a haircut. The kid will be scarred by the experience.
So, what message will an unwary public take from the headlock segment? It could well be that it is okay to restrain autistic people to make them do what you want them to do. This is a dangerous idea, as restraint of autistic people is always traumatising, and can be fatal. Yes, autistic people are drying because of restraint. You can read more about that here.
Person-First Language (PFL)
Often in the documentary, we heard people use person-first terminology; “person with autism” rather than “autistic person”. Paddy himself switched between the two modes. I know PFL has been covered a lot by many autistic people, but it does bear repeating here, because of the high-profile nature of this TV programme. Person-first language is a rule that says you shouldn’t define people by their disabilities. So, you should say “person with disabilities” rather than “disabled person”. However, most disabled people reject PFL, because we are not ashamed of our disabilities, and it’s actually fine to say “deaf person” or “blind person”. Autism is a particularly interesting example because it is about how our brains work. Autism drives our personalities and makes us who we are. Autism defines us. It is not separate from us, or grafted onto us. We don’t want to be called “people with autism” – we are autistic people.
Of all the adults featured in the documentary, Christine McGuinness emerges most positively. She comes across as a very genuine, level-headed, loving person. And in the documentary, she finds out she too is autistic. When she talks about having “faked a life”, it hits home with any autistic person watching. We know what you mean, Christine. We get it. Christine is given her diagnosis by the aforementioned Simon Baron-Cohen. It’s difficult to work out from the footage what was involved in her diagnostic process, because we don’t know what the director chose to leave in, what ended up on the proverbial cutting room floor, and what wasn’t even filmed. And there lies yet more of the problem, because it comes back to wondering what message unwary viewers will take from it. If you take the footage at purely face value, then Christine had a few minutes chat with Baron-Cohen, and hey presto, he pronounced her autistic. I’m sure most viewers will realise it probably wasn’t that simple, but they might not realise exactly how complex and traumatic a real diagnosis is. If you’re in the UK, and using the NHS, then first of all you’ve got to get a clinician to take you seriously enough to refer you for an autism assessment, rather than just diagnosing you with depression, anxiety, or stress. Assuming you can get a referral, you then go on a waiting list. How long you’re on there varies depending on where you live. I waited nineteen months, but I’ve heard people talk of waiting far, far longer in some areas. The actual diagnostic procedure then takes place in two parts, weeks apart. I underwent a series of probing questions from the specialist, examining all areas of my life, and my history. By the end of each session, I was in pieces. All the things I had compartmentalized in my mind, the decades of masking, the autistic traumas I’d experienced, were re-lived in those sessions. I was broken. At the end of the second session, I was told I was definitely autistic. Some time after, I received a five-page breakdown of how that decision had been reached and the diagnosis arrived at. The process doesn’t stop there. Most adults receiving a diagnosis will want to find out more about autism. They’ll go over their life history looking for context and answers, reliving the trauma yet again. And they’ll have to think about whether they are going to tell anyone, and who should be told. If you’re really smart, you’ll wonder what kind of stigma and discrimination you’ll face if you come out as autistic (and believe me, you will face it). Will your career stall because your bosses see you differently? Will people you thought loved you suddenly start to be uncomfortable around you, and pull away? This happens. But unfortunately, all too many viewers will be left thinking, Well, it seems straightforward getting a diagnosis… fill out a form, have a chat with that
rattlesnake nice man Mr Baron-Cohen, and you’re good to go.
So, how does it all fit together? It seems that millions of viewers will potentially come away from that documentary feeling that if you’re an adult who thinks you might be autistic, getting a diagnosis is dead easy, and involves you having a nice chat about how you don’t have many friends. But if you think your child is autistic, it could be a family tragedy. On the one hand, your kid might have “mild autism”, and just be a bit shy… but on the other hand, your kid might have “severe autism”… they might not feel love. They might get violent. They might need to be headlocked, or otherwise restained just to make them carry out the most basic activities. What do you think, really, is more likely to remain in the memory of the casual viewer? The viewer who weeks later is in the pub with friends, and someone mentions a family member has just found out their child is autistic, and they don’t know what to make of it. And our viewer searches his memory banks, and says, “Well, I saw a documentary about it. Heartbreaking. These autistic kids don’t have proper emotions. And you’ve got to be careful, because they get violent…”
One final thought. The McGuinness children didn’t get a huge amount of screen time. Some other kids did, but the McGuinness kids didn’t get much of a chance to tell us about their lived experience of being autistic. Which is odd, considering the title of the documentary says, Our Family and Autism. This documentary was very much about how the parents felt about their children being autistic, or, as was said so often, having autism. I sometimes wonder about neurotypical parents of autistic kids, like Paddy. I wonder if they really have thought through the fact that one day their autistic kids will be autistic adults, with independent thoughts, feelings and opinions. I wonder if they realise that their grown-up kids might want some answers as to why that documentary was made; why a family drama was created out of them being neurodivergent.
That’s all for this week. Until next time, take care, be good, stay proud.
Why Do I Write This Blog?
When I first found out I was autistic, I was a middle-aged adult and I knew nothing about autism. I quickly learned that there was a serious shortage of information and resources for adults in my situation. With this blog, I aim to inform about autism and autism-related issues as I learn, hopefully helping people who are on a similar journey of discovery. Like anyone who writes a blog, I want to reach as many readers as possible; if you like what I’m doing, please share it with your friends and followers. I will never hide this blog behind a paywall, but running the website does incur costs. If you would like to support, feel free to make a small contribution at BuyMeACoffee.Com.
You might also be interested in David Scothern’s blog, Mortgage Advisor on FIRE, which covers a range of topics including mental health issues and financial independence.