"It didn't look crooked to me."

Okay you guys. We have to talk about something serious for a minute. 

The American Psychiatric Association periodically releases the Diagnostic and Statistical Manual of Mental Disorders – a series of official criteria for the classification of mental illnesses, disabilities and conditions.

In May this year, the fifth edition of this manual – DSM 5 – will be released as the first major revision since 1994. Asperger’s Syndrome will not be in it.

The APA is reworking its definition of autism to exclude or re-diagnose those on the higher-functioning end of the spectrum. It’s estimated that anywhere between the highest functioning 10% and 50% of autism sufferers will lose their diagnosis. One of the impacts of this is that almost all people with Asperger’s will fall off the spectrum completely and therefore, a specific syndrome classification is no longer deemed necessary. For those with Asperger’s who do remain on the spectrum, a re-diagnosis of social communication disorder or general autism will be assigned.

Asperger’s is not a thing anymore.

So what does this mean and why does it matter?

Many professionals and laypersons alike will welcome this change as a step in culling back the over-diagnosis of autism spectrum disorders, especially in children. I don’t have a problem with this per se. In terms of Asperger’s I don’t know how helpful a diagnosis in young children can be – not because it might not be legitimate, but because of the reaction others (other kids, other parents, teachers) tend to have to this labelling.

Having worked in childcare for the last two and a half years, I’ve seen firsthand how badly this situation is often handled in schools. As hard as parents work to create an environment where their child thrives, the fact is many educators are still too ignorant about Asperger’s to really deal with it properly. I’ve seen the fear and panic in the eyes of fellow childcare workers at the prospect of “having Jake,” that is – being assigned to work one-on-one with the kid with Asperger’s. I’ve also seen misguided and unhelpful policies devised, usually involving allowing Asperger’s kids to be completely separate from the rest of the group. The theory behind this is to allow these kids to do whatever they like and not expect them to adhere to rules. This theory in itself is fundamentally flawed. One of the common characteristics of Asperger’s Syndrome is a highly developed sense of justice, and repetitive, routine-based behaviours. Asperger’s kids are not unable to follow rules. Quite the contrary in fact. The problems begin when schools are inconsistent with their rules or routines. Which as any educator, parent or general human being knows, is problematic for all children, Asperger’s or not. Inconsistency breeds bad behaviour and poor social adjustment. Fact.

The reason we separate certain children from the group is not to help them, but to help ourselves and to “protect” other children. Giving responsibility to one teacher or staff member takes the load off others, and prevents parents from storming angrily into staffrooms and demanding that that weird child be kept away from their normal child. This is part of the argument against diagnosing children. It’s used as a tool to protect others from the children’s problem behaviour, rather than to help the child themselves.

But as I said earlier, this is only because schools and the general public are uneducated about Asperger’s and autism. People don’t understand what it is, what it means, and the struggles its sufferers face. An Asperger’s diagnosis for a child at a good, supportive school can be an excellent thing. An Asperger’s diagnosis is almost always an excellent thing for the relationship between a child and their family. It can help reassure parents that their child’s behavioural issues are not “their fault” and help them get access to strategies and support that they need to do the best for their child. So it’s society that needs to shift its perceptions, and removing Asperger’s from the DSM is the exact opposite of achieving this.

Asperger’s is rarely portrayed in popular culture, and when it is, it’s with varying degrees of accuracy or sympathy. One of the first representations of Asperger’s syndrome I can remember seeing on TV is during series 9 of Americas Next Top Model, when Heather Kuzmich, a model from Chicago, was a contestant. It was announced loudly and dramatically by the show’s judges from the outset that Heather had Asperger’s, and when the question was raised “what is that?” a vague definition of “she’s very awkward and has trouble with social situations” was given. 

Heather Kuzmich

The show's producers clearly wanted to turn Heather's Asperger's into a sob story, like the girls with Lupus or partial blindness in previous seasons. Unfortunately autism spectrum disorders don't really lend themselves well to being sob stories. There is a TV-appropriate way to conduct oneself in the presence of an illness on these sorts of shows, but obviously Heather wasn't to know that because she has Asperger's and wouldn't recognise this type of social expectation. The result was that while Heather was one of the best models in the show, most of her screen time was spent seeming unbalanced, weak and crazy. The show wanted to make a "thing" out of Heather's Asperger's at first, but when they realised this wasn't going to work, they switched seamlessly to portraying her as an awkward weirdo. The other contestants were all too happy to propagate this by adopting a "Heather's weird" attitude. None of them knew how to deal with Asperger's. Lupus? Blindness? Easy, be nice to those girls because they have tangible, physical problems. Asperger's? What is that? Just an excuse for being a freak? No deal. 

Fictional portrayals of Asperger's are even more problematic. The most mainstream example I can think of is "that guy" from CBS sitcom The Big Bang Theory. You know, that Sheldon guy. 

Jim Parsons as Sheldon Cooper

I haven't watched this show in its entirety, but I'm pretty sure it's not explicitly stated that Sheldon has Asperger's. He just exhibits all the usual traits and behaviours of someone with Asperger's. He has a freakishly high IQ, is oblivious to social expectations, struggles with empathy and emotions and has rigid habits and routines which, if broken, send him into a panic. But he also wears funny colourful t-shirts and has a silly high-pitched voice, and his Aspergic-tendencies, because acted and not real, come off as funny and even endearing. I mean, it's a sitcom. But this is a bit of an issue because again, it creates the expectation that if you slot Asperger's into a social situation, it will be funny (a la The Big Bang Theory) or sad (a la Americas Next Top Model) neither of which are really accurate. 

Some slightly better portrayals of Asperger's, because yes, they do exist. We've all read this:

Mark Haddon's 2003 novel The Curious Incident of the Dog in the Night-time tells a first-person narrative from the point of view of Christopher Boone, a 15-year-old with some sort of autism spectrum disorder (although never clearly identified as Asperger's, we tend to assume it is, because Christopher is highly intelligent, but has significant social difficulties). The book was award-winning and ground-breaking for several reasons, but mostly because it somehow managed to tell a story with a socially acceptable level of uplifting narrative, while still managing to portray autism realistically.  

I think the best fictional portrayal of Asperger's I've seen to date is in Ron Howard and Jason Katim's TV drama Parenthood, in which members of the show's central Braverman family deal with the Asperger's diagnosis of their son Max. 

Max Burkholder as Max Braverman

Apparently, the show employs a behavioural psychologist to workshop Max's scenes and ensure they hold true to what a child with Asperger's would really be like in any given situation. It pays off, because Max manages to be a character who is quintessentially Asperger's without being funny, unlikeable or pitiable. The show portrays the family's struggles with the diagnosis accurately too - the initial confusion about what Asperger's is and what this means for their family, the reactions of different family members ranging from grief-stricken to skeptical, and, eventually, the acceptance of the situation and implementation of realistic strategies. Max makes progress, but not too much progress, with a behavioural aide, he moves from a special school to a mainstream school, but not without huge setbacks, he makes friends, but is sufficiently bad at dealing with them, and he pursues the title of class-president with a believable level of obsessive, competitive spirit. He rarely smiles, but he's not without appeal as a person, and we never have those awful moments where he suddenly emerges out of his autistic bubble and hugs his Mum or asks his dad for advice about girls - because that wouldn't happen in real life. The show doesn't compromise. It doesn't try to make an uplifting recovery-story out of Max's Asperger's. It just shows a family doing the best they can to raise their child and experiencing small, realistic victories along the way. 

So in the last decade we have made strides in incorporating Asperger's into popular culture, not only raising awareness, but also creating a group understanding and recognition of legitimacy. So much of this hard-won legitimacy will be lost if people with Asperger's lose their diagnosis. 

But this isn't just about the reactions of society. It's also about individual identity. I've talked at length about the impacts, good and bad, of an Asperger's diagnosis for children. But what about for adults? Adults who are independent, autonomous human beings are able to take control of a situation like an Asperger's diagnosis. It isn't "imposed" on them, like with children. In my experience, most adults issued with an Asperger's diagnosis will identify that exact moment as the one where they suddenly understood themselves. 

For adults and teenagers, an Asperger's diagnosis can be liberating. It can explain things to them that they have struggled with their whole lives. It can give them a common ground with others that they have always lacked. It can help their loved ones to better understand them. When you are diagnosed with Asperger's, a wealth of support, books, websites, academic literature and (increasingly) social understanding suddenly applies to you. Most adults I know who have Asperger's are proud to say they have it, and talk about it more like one would talk about being a "visual learner" or being "mostly left brain" - as a personality trait rather than some kind of disability. Because Asperger's recognises difference without recognising ineptitude. If you take away people's Asperger's, you take away a part of their identity that they have personally claimed and cultivated. 

You also take away many people's right to services which have helped them to turn their Asperger's into a positive in their lives. Many people with Asperger's have a unique way of thinking and are hugely intelligent, but without the right support, both emotional and tangible, many of them would never reach their potential. These services include in-school support staff and behavioural aides for children, and anything from uni lecture note-takers to access to psychological support for adults. 


The DSM is not the law. It doesn't dictate how policy-makers should distribute their funding, and we can only hope that said policy-makers recognise this. There will also be a large number of mental health professionals who disagree with DSM-5 and continue to diagnose Asperger's and work with patients under this diagnosis. 

But there is no guarantee and for those who have fought for years to gain recognition and understanding for people with Asperger's, this marks the worrying beginning of its exit from our collective consciousness. It's up to society to reject this assessment, as I'm sure anyone who, like me, has friends or family who identify as Asperger's, will be quick and vocal in doing.