Why Should We Care About Changes To Autism Diagnosis In DSM-5?

After looking at what the DSM criteria mean and why they’re going to change, let’s get to the most interesting bit and look at why people are complaining about the DSM-5 changes, and what it all might mean for you.

The single spectrum

The merging of Autistic Disorder, Aspergers and PDD-NOS into a single spectrum has made people nervous that those who were diagnosed with one of these disorders under DSM-IV criteria will no longer satisfy the DSM-5 criteria and automatically become ineligible for services and support.

This idea was probably borne of the suspicion that the changes are being made in an attempt to reduce the numbers diagnosed (and able to access services), and compounded by some poorly interpreted study results that got a lot of media attention earlier this year (Scientific American has a good summary).

The truth is that anyone diagnosed with an ASD under DSM-IV will still have that diagnosis when the changes come into effect. That’s not to say that problems won’t arise if service providers or government agencies require people to be reassessed under the new criteria though – and it’s this aspect that’s making people nervous because, as we’ll see down below, there are situations where autistic behaviours that satisfy requirements under the DSM-IV won’t be enough to get a diagnosis under DSM-5.

Another thing that may change is the number of people diagnosed in the future under the DSM-5 criteria. This may have been one of the intentions of the changes, but not for the reasons most people suspect. The push towards reducing the number of diagnoses isn’t about trying to save money or keep people from getting the services they need, but to protect the integrity of an ASD diagnosis by only giving it to those who truly are autistic (thereby ensuring that support and funding goes where it’s most needed).

The disappearance of Aspergers

The other reason this change is causing so much concern is the uncertainty over the future of the term Aspergers, and what it will mean for those people who currently identify themselves as having it. Those who consider it to be a distinct disorder object to the idea of being forced to call themselves autistic, others worry it will change the way they are treated or cause them to lose access to support.

A lot of time and resources have been spent on Aspergers, whether in research or treatment options or figuring out how to distinguish it from Autism. So there are a lot of people with a vested interest in continuing its use, and we have to acknowledge that whether or not Aspergers was ever a valid diagnosis, it’s now firmly entrenched in the way we all communicate about autism.

The severity ratings

The removal of Aspergers as a separate diagnosis may be getting all of the attention, but to me this new rating scale should be of far greater concern.

Let’s look again at the three proposed severity levels:

  • 1 – Requiring support
  • 2 – Requiring substantial support
  • 3 – Requiring very substantial support

I’m not even going to get started on how astonishing it is that a clinical manual would use a term like ‘very substantial’. You can’t have degrees of substantial, it’s like saying ‘very essential’ (Okay so I got started on it, but sheesh APA people).

It gets worse.

There’s a description for each of the two domains within each severity level, presumably to assist in making decisions about whether the person needs ‘help’, ‘a lot of help’ or ‘very a lot of help’. I say presume because the wording is, in typical DSM fashion, vague and overlapping.

Let’s compare some of the descriptions from the Social Communication domain:

  • Level 1 – Has difficulty initiating social interactions
  • Level 2 – Limited initiation of social interactions
  • Level 3 – Very limited initiation of social interactions
  • Level 1 – Clear examples of atypical or unsuccessful responses to social overtures of others
  • Level 2 – Reduced or abnormal response to social overtures from others
  • Level 3 – Minimal response to social overtures from others

And these from Restricted Interests and Repetitive Behaviours:

  • Level 1 – Cause significant interference with functioning in one or more contexts
  • Level 2 – Interfere with functioning in a variety of contexts
  • Level 3 – Markedly interfere with functioning in all spheres
  • Level 1 – Resists attempts by others to interrupt
  • Level 2 – Distress or frustration is apparent when interrupted
  • Level 3 – Marked distress when interrupted

There’s just too much ambiguity and not enough distinction to make these levels meaningful. It’s difficult to see how they can be applied reliably in a real-life clinical setting, and yet I suspect that it will be these ratings which will end up being the deciding factors in whether someone has access to support services and funding. It feels too much to me like an attempt to legitimise the concept of high and low functioning autism.

Organisations will use the new criteria as an opportunity to curtail services

This is a legitimate concern but doesn’t actually have much to do with the DSM itself. The criteria are going to change at some point, they have to in order to keep up with our knowledge of autism. But how the government, schools, insurance companies and other service providers apply the criteria is out of the APA’s control – this issue is about how people are allowed to interpret the changes, not whether or not they’re published.

So there needs to be a double-pronged approach to advocacy surrounding the DSM-5 – making sure the changes correctly define autism and won’t adversely impact the autistic community, and ensuring that nobody uses the publication as an opportunity to reduce service provision.

The APA review process is flawed

There’s a lot of disagreement about the way the criteria have been developed and the validity of the changes. The gulf is wide between the few hundred review members who devised and support the changes and the several hundred thousand mental health clinicians who will have to use them. It’s not the APA’s practice to conduct field trials or research to assess the impact of the changes, and they seem resistant to feedback from those that do.

The new criteria are too restrictive

Some are concerned that the requirement to meet all three of the Social Communication criteria is overly restrictive. Currently there are eight criteria in those two domains, of which only three must be met to satisfy the minimum requirements for a diagnosis. It’s possible to do that by meeting criteria that no longer exist in the domain in DSM-5:

  • Language delay (removed)
  • Repetitive use of language (moved to the Restricted Interests and Repetitive Behaviors domain)
  • Deficits in seeking to share or conversation (merged into the reciprocity criterion)
  • Imaginative play (merged into the relationships criterion)

So it’s theoretically possible that some people who currently meet enough criteria to get diagnosed would struggle to meet all three criteria in the new Social Communication domain. At least I’m pretty sure – I’ve bent my mind all kinds of ways looking at the possible criteria combinations, so I might throw them into a post sometime to show you what I mean.

The changes don’t go far enough

Some of the problems with the DSM-IV criteria have disappointingly been carried over into the next version. Although the new criteria include more examples, these still aren’t wide enough to adequately cover the way autistic behaviours present in adults or in girls. There’s still no acknowledgement of the fluid nature of these behaviours across one person’s lifespan or in different contexts. And perhaps most frustratingly, the criteria are still peppered with vague qualifiers (like excessive, extreme, highly and strong) without guidelines for interpreting them.

The bottom line

It’s interesting how far the DSM has come, from being a dusty manual that sat on the desks of clinicians and researchers to being openly debated by parent bloggers and the news media. Somewhere along the line it assumed an importance that it never should have had – the ultimate word in defining autism.

After all, the APA is just an organisation of psychologists that work in the US. Think about that for a moment and you’ll see why their monopoly on diagnostic criteria seems a little odd. Autism exists in every part of the world, and isn’t just diagnosed by psychologists. If their criteria for autism (and processes for creating them) are so flawed, why do we continue to use them? There are alternatives – the ICD-10 for one, created by the World Health Organisation and available to anyone for free.

So perhaps instead of continuing to butt heads with an organisation who are making a product nobody seems happy with, we should be lobbying for an independently created, global set of criteria for diagnosing autism.

I hope that this series has been helpful in explaining some of the ins and outs of the controversy. If you’ve missed any of the articles, here’s the complete list:

14 June, 2012 by Bec Oakley

Bec Oakley is an autistic writer and proud parent, with an intense passion for 80s text adventures, Twizzlers and making the world a better place for autistic people and their families.