A Label or a Signpost – The Diagnosis Question

In theory it sounds like a great idea, a show that looks at how developmental disorders such as autism are diagnosed. Debunking myths that seem to be annoyingly persistent, to name one the idea that some people believe that diagnoses and medication are given out like candy and that any parent can get one for their child just by being persistent enough. Over the course of the four episodes, the show does do some of that, highlighting the difficulties parents have with health and education services and how difficult it can be to get them to take you seriously. But the title of the show “Born Naughty” and the way it’s set up is most troublesome. Right from the start it made me feel uncomfortable. I disliked the opening line: “diagnosis or discipline.” It’s not one or the other, kids with special needs get disciplined too, just in a way that is more appropriate to their needs and to their level of understanding. What makes me uncomfortable is filming these kids at their worst moments. It doesn’t seem right somehow.

What’s also bothersome is the fact that because they were on the show they got fast tracked into getting help, which is great for them but what about the other kids? The kids who schools say are fine, the ones whose parents go ignored and unheard by professionals when they clearly need help. What can be done about that, it’s not just about raising awareness and understanding about how difficult it is to get a diagnosis. It’s about the way the whole system is set up, it’s set up to hinder parents at every possible turn and it certainly doesn’t have the best interests of the kids at heart. I don’t know how to solve that, how to get the whole system to change the way they view disability and special needs.

Because at the moment it makes no sense, society is obsessed with disabled people working and being “contributing” members of society. I put that in inverted commas because they seem to have the attitude that being in paid employment is the only way to do that. It makes no sense because the system expects so little of kids with special needs, it sets them up for failure, and it only expects the bare minimum of them. Despite what the law says, they don’t have the same rights or access as their non-disabled peers because of how their progress is defined. They don’t have to make the progress they should be making, they have to be making only adequate progress and that is enough.
Schools and authorities are happy to accept that, are happy to provide as little as possible because as long as a child with special needs is making “adequate” progress, they are deemed to be meeting their targets and to be receiving a satisfactory education.
If they want as many disabled people as possible to be able to work and live independently then they are going to need sort out that disconnect.

That was kind of a rant there, and only slightly on topic, still important though. Back to the show, what I don’t like is the basic format of it. How it worked is that each episode there were two kids, one of them would turn out to be diagnosed with something and the other wouldn’t. It’s almost as if it’s a reality show, pitting (indirectly anyhow) the two kids against each other, keeping people guessing about which one has something “wrong” with them and which one is just a brat with bad parents.

It wasn’t until the second episode that I figured out what exactly was so bothersome about the title. There’s two kids every week, one whose problems are a result of how their parents are dealing with them and a second whose issues are a result of a condition or some kind of medical problem or a disability of some kind. So the title refers to the kids who have a disability and it’s referring to them as being “born naughty.” But they aren’t just misbehaving; they can’t help how they are acting. And the title is not accurate in regards to the kids who don’t have any specific or definable medical issues either because they weren’t born naughty, for some of them their issues were caused by how their parents were dealing with them. Or maybe I’m just being too pedantic again, who knows.

The ethics of it are questionable as well, I know the families signed up for the show but it still doesn’t seem right. Using these people and their children’s problems as a source of entertainment, it’s not just what they did but how they did it. For one thing telling someone that their child has autism whilst filming them for a TV show is pretty questionable anyway, but the sad music they used like it was special of the week TV movie, that was not cool.

The show is both naive and exploitative and whilst showing how hard it can be for parents to get their concerns taken seriously by medical professionals, it also hugely over simplifies what happens afterwards. It sends the misleading message that getting a diagnosis is the Holy Grail, that it’ll open all the required doors, that everything will be fine afterwards. To quote Sheldon “in what space sir, in what space?”
Most importantly it gives the misleading impression that a diagnosis is required to access help and support at school. That is simply not true, such things are in theory needs based and not on diagnosis. Note I said, in theory, truth is a diagnosis can help hugely with getting support. However it’s the answer to everything, for schools and authorities sometimes ignore certain diagnoses, deny their existence or just flat out refuse to provide anything.

The parents seem to be very naive on this count too, they seem to share this view and I think the professionals involved in the show are doing the parents a disservice by not telling them how difficult things are going to be for them in terms of having to fight for what their child needs.

This applies in particular to the girl who was diagnosed with Pathological Demand Avoidance, something which most annoyingly I’ve seen described as “mild autism” when reading articles about the series.“To unlock all sorts of help for her” – what a lie that is, getting a diagnosis often doesn’t mean that at all, actually in some places you’ll find that getting the diagnosis is the only thing that is on offer. Dealing with it and how best to proceed is more often than not left up to the parents, not a professional in sight. It’s sad, the girl’s mother thinks their battle is over, that now they will get help. Think again, it’s just beginning. Especially give that it’s PDA they diagnosed, that’s still not recognised by a lot of schools, authorities and professionals.

In the second episode about the girl who was eventually diagnosed with PDA there were two things that I didn’t like about the speech and language therapist, first of all they said she was assessing the girl for autism. They didn’t make it clear that a speech and language therapist alone does not do that (if you want to educate people you have to be clear and careful not to spread misinformation) but they do so as part of a multi-disciplinary assessment team. It may seem like a small thing, but you have to bear in mind the majority of people watching won’t have any idea about who does what and how it all works. You don’t get many chances to educate people about such things, not whilst having such a wide audience at least. It’s important to make everything as clear as possible.
The other thing I didn’t like was when she was explaining the reasons for the girl’s anxiety. It’s fine for professionals to give potential explanations or theories but they should be careful not to talk as if what they are saying as fact. They don’t know what is going on in someone’s head; they don’t know what specifically it is that makes a person anxious or afraid.

The third episode was just unbelievable, how did no-one spot that Thomas was autistic? He’s a walking talking textbook example of someone with Aspergers. I didn’t appreciate the way they spoon-fed the audience or they way they seemed to be building up suspense towards the moment when they said that he was most likely on the autistic spectrum. I can’t help but be a little critical of his parents. It’s personal to me because I could identify with him and the problems he was having, the chaotic way his parents ran their household, the way his mother kept screaming at him, the fact that he had no space of his own. I liked Thomas a lot, plus we’re in agreement in regards to what the best piece of Lego is. I’ve never encountered anyone before that has a favourite piece of Lego, let alone someone who will admit they do.

Reading the comments online about the show has given me some interesting insights into what it’s like to be on the other side of dealing with autism, in this case from the parental perspective. The topic being discussed was his mother and her lack of response to him talking about Lego, someone pointed out that she’d probably heard him talk about a thousand times before and that it’s hard to show enthusiasm or to engage with it in that case, especially when it’s something they find tedious. It certainly gave me something to think about. I talk at people a lot, I know I do this but I’m rarely aware of it whilst I’m doing it. I’m usually so focused on what I’m talking about that anything I do know about the rules of social interaction are completely forgotten, likewise when I’m anxious or worried about something. Equally I know that I don’t listen to other people enough, it’s not that what they are talking about is boring, sometimes I really do want to know what they are talking about. Regardless I still can’t keep quiet or I can’t focus on what they are saying. It’s not that the subject is boring, it’s just that it seems like if something isn’t about one of my special interests then my mind completely switches off.

The boy in the final episode of the series was diagnosed with PDA too, and once again instead of explaining things the show chooses to perpetuate certain untruths. I feel sorry for Charlie’s mother, she thinks getting the diagnosis will mean that people will understand him and that it’ll mean he’ll get the correct support. People won’t understand him, not unless they want to make the effort. And especially with his type of autism, with the elements of pathological demand avoidance. She’s going to have difficulty getting professionals in recognizing that, let alone getting ordinary people to be understanding about it. As for the right support, don’t hold your breath. Because he’s so “high functioning” she can expect to have to fight for every little thing and to still be dealing with most of this on her own. The best way to deal with him is going to get her a lot of judgement from other people, they are going to look at her and think she is letting him get away with stuff and all that nonsense. It’ll matter less to here now because she knows what works and what doesn’t, but she needs to know that his diagnosis will not bring understanding from other people.

One thing that really annoyed me is the way they skipped over the poor way in which the local education authorities had dealt with him. With or without a diagnosis, the local authorities have been failing him. They have an obligation to find and provide a suitable full time school place for a child. A diagnosis is not necessary for a statement or for other such help, they’ll tell you it is but it isn’t. Such help is needs based, nothing else, at least that’s how it’s supposed to work. Point is they are breaking the law by not providing him with an appropriate education.

I can’t get past their use of the word “label” either. How they say that the parents are “desperate for a label like ADHD or autism.”
To quote a very wise and oft repeated phrase from online, labels are for luggage, people have a diagnosis. An additional wise point to compliment that, if a child had an illness or a physical disability, would it be a label then? Wouldn’t you want their needs to be properly diagnosed so you can know how best to proceed? I really don’t like how they use the word label; it really gets to me in a way I can’t quite explain. Another good quote in relation to this is “it’s a diagnosis, not a prognosis.”

Also it bothers me when they say what a cute kid one of them is, or how smart they are or something like that. People with autism can be all of those things. Plus they are perpetuating certain stereotypes, like the eye contact thing. Yes some people with autism cannot or will not make eye contact, but then there are other autistic people who will stare at you because they don’t when to look away. My point is, poor eye contact is not in the diagnostic criteria for autism and the possibility of autism should not be ruled out because a child seems to have good eye contact. For a show that is meant to be challenging stereotypes and false perceptions of disorders like autism, they sure are perpetuating a lot of them. For example, the false but very common perception that people with autism are disinterested in other people and don’t want to interact with them. When they talk about Aspergers they talk about wanting to interact but not being able to, but when they talk about autism they talk about a lack of interest in interacting with others. A line can’t be neatly drawn between the two like that, it’s a lot more complex than that.

Another thing to tie in with all of this, the idea that some parents don’t want their kid to be “labelled” as the Aspergers one, or the autistic one. They actually think they shouldn’t get them diagnosed or should keep their diagnosis a secret. By doing that they are telling them that it’s something to be ashamed of, a secret to be kept hidden. Is it not sending them the message that the world and they do not accept them for who they are and that they need to be someone or something else in order to fit in?
Just what is it their worried about, is it their kid’s feelings or their own?
Ignoring it or keeping it a secret will just end up in them getting a whole host of other “labels.” Trust me, there is an excellent chance of them being labelled the weird one, or strange, crazy, retarded or whatever other insult their peers can muster.

 

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