As anyone who has read my blog ought to know, I’m a firm believer that self-diagnosis is valid. By this, I don’t mean folks who claim to be autistic, (or any other self-diagnosis) because they want a ‘get out of jail free card’ without having more than a basic understanding of autism. I mean those that have studied the criteria, read accounts by other autistics, and spoken to friends and family to confirm that the way they think they behave is consistent with how others see them behave. In some ways, I find it can be more valid than an official diagnosis, because you alone know your innermost thoughts, and what’s going on in your mind. A lot of self-diagnosed autistics find that the more they delve into the world of autism, the more they come to grips with who they are. It can be a long journey of self-discovery.
This is a very far cry from ‘armchair diagnosis’. This is the habit a lot of people seem to have, where they assign a ‘diagnosis’ to a person, without having met them and spoken to them, in fact usually without knowing too much about them at all. Even so-called ‘experts’ find this hard to resist, especially when it comes to posthumous ‘diagnosis’. For an example of this, you need look no further than the first chapter of Steve Silberman’s Neurotribes. Yes, I’m sure he researched it extensively, but I still don’t believe it can truly be valid.
Earlier this week, Rosie O’Donnell tweeted a link to a video purporting to show ‘proof’ that Donald Trump’s youngest son, Barron, is autistic. I’m not sure it does that, as it’s a highly edited video that shows behaviour that could be explained by a whole host of conditions, or even plain boredom or tiredness. There is absolutely no way of knowing what’s going on in someone’s mind by merely observing a few snapshots from it. And, as has been shown in numerous studies on bias, people will see what they want to see. So, some people, including Rosie, saw ‘signs of autism’, while others saw ‘a spoilt brat’. Both sets of people may be right, equally both sets may be wrong. ‘Armchair’ diagnosis is plain wrong. It can also be dangerous, especially when the ‘diagnosed’ person is a child. Children have been, and continue to be, murdered simply for being autistic.
Rosie would have you believe that she ‘outed’ Barron Trump because ‘there’s no shame in Autism’. But, there are autistics who do feel shame in their neurology, and don’t want anyone to know. This is their prerogative. Some make public that they may be autistic, but face such a backlash that they then withdraw the claim, as happened to Seinfeld. I believe disclosure should be a personal choice, and if someone hasn’t made the choice to declare publicly that they are autistic, I believe we should respect that choice. And that we should certainly ignore rumours and speculation about them. For example, on an autism course I attended, the speaker put out there, as an example of a role model for autistic girls, the ‘fact’ that Helena Bonham Carter is autistic. Yet, I have not found a single statement by her that confirms this. The same is true about the footballer Messi. These people may well be autistic, but if they have reasons not to disclose the fact, then we should respect them.
Some people are ‘outed’ and rise to the occasion. A strong example of this is when Olympic gymnast Simone Biles was ‘outed’ to using medication to treat her ADHD. She proudly proclaimed that she had nothing to be ashamed of, and became a hero to many people for doing so. But not everyone is able to do this, and just because a celebrity has a condition does not mean they should be forced to become a ‘poster boy’ for it.
Recently, tv presenter Chris Packham disclosed his autism diagnosis. I suspect the timing was influenced by the need to promote his memoirs, which no doubt mention the fact. Whether or not he would have publicly disclosed his diagnosis otherwise, I really can’t say. And while I greatly admire his courage and openness for publicly joining the autistic community, I would not admire him any less had he not done so.
When my children were diagnosed as autistic, I asked their permission becfore disclosing that fact to their teachers and doctors. I have made it clear that it is entirely up to them when, and if, they tell anyone else. They chose to tell their grandmothers and one set of neighbours, who have all sworn confidentiality, and no one else.
If people truly want respect for autistic people, then they should respect their choice in these things. ‘Armchair’ diagnosis and ‘outing’ shows a complete lack of respect. No matter what Rosie thinks.
[image shows a cartoon drawing of an old fashioned brown armchair, with a white background.]