10th anniversary of the DSM 5

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Chris Bonnello, 37, was diagnosed with Asperger syndrome in 2011. But these days he just says he’s autistic. “A lot of us did not want to let go originally, it was something that fitted us very nicely,” recalls the teacher turned autism advocate who runs a website called Autistic Not Weird from his home in Nottingham. “But it is better for autistic people if we are all recognised, acknowledged and appreciated together.”

Sarah Weston, 47, received a diagnosis of autism spectrum condition in 2019. Yet in daily life she describes herself as an “Aspie” – an informal, affectionate term for a person with Asperger syndrome. She doesn’t have the complex learning disabilities some autistic people do and which non-autistic people can think of when they hear autism. She says using Aspie or Asperger’s just helps outsiders understand what she’s like and clears up confusion. And she is certain, based on her cognitive and language abilities, that she would have received the Asperger’s label had she been diagnosed earlier.

Weston says she is not trying to separate herself from other autistic people because she thinks she’s special; she would much rather not have the complex struggles that come with her disability. Although she has also learned the hard way it is better to stick to calling herself autistic online, where she has been bullied for using Aspie. “The language police will inform you that you can’t use that term because of the link with Hans Asperger and the Nazis,” she says.

While the new framing aroused high emotions at the time, a decade on how have things evolved? Given diagnoses matter for support services, is the reconfiguration really proving the best way to help everyone who needs it across the spectrum? “The spectrum is so broad it doesn’t make much sense,” autistic scholar Temple Grandin, told the Observer last year.

Asperger’s syndrome only had one term – spanning 19 years – in the DSM (where it was called Asperger’s disorder). It was included in DSM-IV, published in 1994, having come to prominence after British psychiatrist Lorna Wing, who developed the concept of an autism spectrum, coined the term. Seeing it as a form of autism, she named it based on Austrian paediatrician Hans Asperger, who had published a paper in 1944 that identified children with a specific pattern of behaviour and abilities he called “little professors”. (Asperger’s involvement with the Nazis came to the fore in 2018 with the publication of Asperger’s Children by historian Edith Sheffer, which presented evidence he was involved in the Third Reich’s euthanasia programme that killed children considered to be disabled.)

There were many reasons for Asperger’s removal in DSM-5, notes Francesca Happé, a professor of cognitive neuroscience at King’s College London, who was on the working group that made the changes. One was a lack of robust, replicable evidence to support a diagnostic distinction between Asperger’s syndrome and “high-functioning autism”.

But the “nail in the coffin” was a study of major expert diagnostic clinics across the US showing diagnoses weren’t being given uniformly.

The identity loss for people with Asperger’s diagnoses was one of the biggest concerns at the time, recall those caught in the controversy. A lot of self-advocates didn’t want to trade Asperger’s – which they had been working hard to destigmatise – for autism. Whereas Asperger’s could connote gifted and quirky, autism could suggest someone who had trouble participating in society.

But a frame-shift occurred, says Noor Pervez, community engagement coordinator of the US-based Autistic Self Advocacy Network. People got over the hump and started to realise the line was artificial: “drawn from the outside in”. A spectrum did make sense – Asperger’s wasn’t a separate thing – and carving out an elite pocket wasn’t the solution. There was no better or worse form of autism and no higher or lower; there were just different support needs, and Asperger’s too came with complex challenges that were often overlooked. The self-advocates began to claim autism for themselves with the aim of lifting everyone up, becoming more connected to the wider neurodiversity movement and disability rights movement in the process. “[DSM-5] went against the human need to compartmentalise… and it forced everyone to make peace with one another,” sums up Michael John Carley, a US-based autism self-advocate and campaigner.

Autistic Not Weird’s Bonnello periodically surveys the autistic community on a range of autism-related issues (his 2022 survey had more than 11,000 respondents, mostly from the UK and US, about two-thirds of whom were autistic). While in 2018 about 51% said they used Asperger’s syndrome in relation to their own personal situation or when discussing autism, in 2022 it had plummeted to under 19%. The Hans Asperger revelations occurred between the surveys, notes Bonnello, and while it isn’t personally why he moved away from Asperger’s, it was likely a big driver.

Brenda Dater is the executive director of the US-based Asperger/Autism Network non-profit, which offers programmes and services. The organisation originally campaigned to stop Asperger’s being removed from the DSM-5 because of concerns that without the label community members would no longer be able to find one another. What she’s seen over the past decade is an age split. While older people, who were either diagnosed in their youth with Asperger’s or claimed the title later in life, generally find comfort in its identity, young people now not only don’t receive that diagnosis but are actively rejecting the term. The new generation want to be more inclusive and they also don’t want to be associated with a syndrome named after someone with Nazi ties. “I get many more questions about why we still have Asperger’s in our name versus worries we are going to lose the term,” she says.

In the next few months, the organisation is planning to drop the Asperger’s – something Dater says the community absolutely wasn’t ready for five years ago. She would never, she stresses, tell an individual they couldn’t use the term Asperger’s or Aspie “but as an organisation we need to move away from that”. “Asperger’s is on the way out; I expect it will be gone in the next five or 10 years, and it won’t be coming back,” she says.

Yet it would also be wrong to think there aren’t still those flying the flag for Asperger’s – culture changes slowly – and some campaigners suggest perhaps the shift has been less pronounced in the UK than the US.

There is still some stigma around autism compared with Asperger’s in both countries, says Robert Naseef, a US-based clinical psychologist who advises the Autism Society of America. “The stereotype of ‘classic autism’ endures,” he says. When Naseef gives a diagnosis of ASD requiring level 1 support, he’ll often tell people it was formerly called Asperger’s syndrome. “I soften it a little… but I also explain: ‘You have autism, you are autistic and you are part of a group that is now over 2% of the population.’”

The UK charity Action for Asperger’s, set up and run by Elaine Nicholson, provides specialist counselling services for those “with autism/Asperger’s syndrome” or who live with them. Nicholson has been through some angst with the name – first because of the DSM-5 and then the Hans Asperger revelations – but she’s sticking with it. When people hear autism, they think extremes not “functioning people with difficulties”, which is who her service is aimed at, she explains. “It’s finding one’s tribe,” she says. “I get lots of wives writing in saying: ‘I think my husband has Asperger’s.’ It is never: ‘I think my husband has autism.’”

Nicholson follows a small campaign to reinstate Asperger’s syndrome in the DSM spearheaded by Normand Giroux, a Canadian clinical psychologist who represents a Quebec-based parent association. Giroux has made multiple representations to the APA, the last in 2022, arguing Asperger’s should be reinstated as the “Aspie profile” within the broader autism umbrella to recognise autism’s “most mitigated or partial forms”, but so far to no avail. “They say we are bringing clinical perspectives that are not truly scientific,” he says. But the clinical perspective is important too, he argues.

When Sarah Weston got her diagnosis, she turned to Asperger’s Syndrome People into Everything (Aspie), a small charity that provides a centre in Worcester, where she lives, for adults from the West Midlands who identify as Asperger’s types and where they can feel welcome and accepted (diagnostic services in the area direct people to the organisation).

Aspie is run by Julia Micklewright, following the vision of her late daughter who set it up in 2011 after being diagnosed with Asperger’s and finding a dearth of services. Micklewright doesn’t support the reconfiguration that has occurred with DSM-5 and agrees with Temple Grandin’s sentiment. Micklewright notes with pride that when she received her British Empire Medal in 2021 it was “for services to People with Asperger’s Syndrome”. “They’ve tried to wipe it out, but Asperger’s exists,” she says.

Yet while many self-advocates now embrace life on the spectrum, there are different views among experts about whether things are working quite as they should, and how to fix them. One issue is whether people who would have been diagnosed with Asperger’s previously are falling through the cracks under the new system. Fred Volkmar, a professor of child psychiatry at Yale University, led the group that first introduced Asperger’s under DSM-IV. (He was originally on the DSM-5 group but resigned over process issues.) A specific problem Volkmar still sees a decade on is that the definition of ASD was effectively made more stringent under DSM-5 – and people at the margins, who might have qualified for Asperger’s or atypical autism, are missing out on a diagnosis as a result. Those people need identifying too so they can get support. The reduction rate in diagnosis under DSM-5 for those with Asperger profiles was recently estimated, based on a meta-analysis of studies, to amount to about 23% – though Volkmar thinks the number is likely to be higher.

Yet Catherine Lord, a professor of psychiatry at UCLA, who was on the DSM-5 group, disputes that a significant minority of people are getting lost. The reality of DSM-5, she says, is that it simply just isn’t very specific. Symptoms, for example, don’t even have to be current (they can be historic). “Almost all of us, by history, would meet some of the criteria for autism,” she says.

“If people are slipping through the cracks, then other people are slipping in,” says Francesca Happé. Diagnosis rates have increased exponentially over the past 20 years in the UK, she says, with the biggest increases in women and people over the age of 19. And the best interpretation isn’t that DSM-5 has necessarily changed much but that diagnosis is being more widely applied and there’s a historical backlog.

Yet Lord does see a different issue with DSM-5. While there are specifiers so people can end up with more qualified diagnoses and the right support bracket, in practice they aren’t often used. And, as a result, she has become particularly worried that people with higher support needs are missing out on services.

In 2022, Lord, as part of a group of other experts and parent advocates of autistic children with high dependency, published a proposal in the Lancet that a new term, “profound autism”, be designated to apply to those with autism who need round-the-clock care. Lord acknowledges the irony – having brought the autistic conditions together she now wants to divide them – but the logic behind it, she explains, is that this group got lost in the shuffle when autism became the new catch-all. “The disability rights movement when it calls for self-determination and independence… can blow off the fact that there are those who do need 24-hour care,” she says.

The proposal wasn’t well received among self-advocates. Not only was the language non-inclusive and fuzzy but it went against the grain of treating people as individuals and getting them the support best suited to them (and of which more is desperately needed across the spectrum). The fight is for all autistic people, says Michael John Carley. And the last thing any significantly challenged kid needs is a label like that.

Yet while “profound autism” clearly missed the mark (Lord now acknowledges it may not have been the best term), the idea of introducing new subgroups to break up what really is a very heterogeneous spectrum could be helpful for both support services and research if it can be done sensitively, argue some experts.

Several academic groups, Lord notes, are now working to see if they can come up with some alternative subgroups under the spectrum that may better characterise severity and could be used in the future. “Just exactly how you formulate those is really difficult,” she says.

For Chris Bonnello, neat, few-word categories that can divide up the experiences of so many autistic people will always be elusive. Better, he says, to call everyone autistic and follow it up with a short individual description to make clear someone’s uniqueness and what help they may need: “Chris is autistic: he has historical troubles with anxiety and employment, and he can solve a Rubik’s Cube in less than 15 seconds.”

There was no better or worse form of autism and no higher or lower; there were just different support needs

Grouping everything together makes it hard to find relevant information and statistics. What is the unemployment rate among autistic people that are verbal? When they say the life expectancy of autistic people is 36, and the most common cause of death is suffocation, does that have relevance to my life personally? It's really hard to tell.

I understand the rationales for getting rid of Aspergers as a label, but there's all these efforts to find replacements for it and I don't see any as being successful so far.