Why Does DSM-IV Need To Be Updated?

A look at some of the driving factors behind upcoming changes to the way DSM criteria are used to diagnose autism

It’s clear that having uniform diagnostic criteria can be helpful in giving us a common platform for talking about autism, but there are issues with their use and it’s important to understand these before we look at the proposed changes coming in DSM-5.

Interpreting the criteria

As you’ve probably noticed, the wording of the criteria is fairly unclear and limiting in places. For example, some of the criteria require ‘a lack of’ the behaviour which technically means they can’t be satisfied if the child does it sometimes. Other criteria use qualifying words like ‘marked impairment’ and ‘poor flexibility’ without guidelines to explain what they mean – how much impairment is that, exactly?

The criteria also don’t come with a set of instructions, so it’s up to each diagnostician (or researcher) to decide how to apply them. This lack of clarity in the wording forces people to use their own standards to interpret what they mean, creating room for variation and a lack of consistency in the way they’re applied – an impairment that seems marked to one clinician may seem less important to another, or the child may be showing poor social interaction in some settings and not others.

Interpreting behaviour

Unless someone tells us why they’re doing what they’re doing, the best we can do when observing behaviour is to make an educated guess about what’s going on… and some of the time that guess will be wrong. If we see a kid put his hands over his ears at a party, we might assume that he’s overly sensitive to noise – when in fact it could be that he just doesn’t like the sound of his heart thumping when he’s excited.

Autistic behaviours are commonly misunderstood, probably because they can look a lot like typical behaviours done in unusual ways or circumstances… and so we assign typical explanations to them. Ignoring a crying friend is often interpreted as a lack of empathy, for example, when it may have nothing to do with not feeling someone else’s pain and everything to do with not being able to recognise what crying means and how to respond.

So it’s possible (and natural) for two diagnosticians to look at the same behaviour and come to different conclusions based on their own experiences, the information they’ve collected and their skill in interpreting what they see. And because autism is entirely based around behaviour, this is just another one of the reasons why it can be so complicated to diagnose.

Relying on parent reports

A large chunk of the evidence used for diagnosis comes from interviewing the parents. The quality of the information provided by them is dependent upon their memory, observational powers and ability to describe and document the things their child has been doing. Being able to do that properly requires skills that you don’t automatically acquire just because your kid is autistic.

Not everyone finds it easy to express themselves, especially if they’re apprehensive about the appointment or English isn’t their first language. Maybe they have five other kids and haven’t had time to take notes about when their possibly-autistic kid first put two words together. Plus they’re tired, overwhelmed and super stressed, so their mind isn’t exactly firing on all cylinders right when they need it to.

So the diagnostician might be working off information that is incomplete or inaccurate, simply because it’s easy to forget when milestones occurred or to recall them on demand.

Distinguishing between disorders

There’s a lot of contention over the practicality, reliability and necessity of diagnosing Autism, Aspergers and PDD-NOS as separate disorders. Some argue that not only is it impossible to tell the difference between the three (because the criteria aren’t good enough or the separate disorders simply don’t exist), there isn’t any point in attempting to do so since it has no bearing on treatments or outcomes.

In reality, the only area in which the three diagnoses are applied (aside from research) is in access to funding and support services. An arbitrary merit system is often used in which Autism is deemed to be the part of the spectrum which requires the most assistance, and so an unnecessary importance has been placed on which of the three diagnoses a child is given.

PDD-NOS is a frustrating example of this. It’s a diagnosis which means nothing and helps nobody, often being arrived at as a result of a lack of confidence in interpreting the criteria, or a reluctance to allow access to funding for a condition that is incorrectly considered to be milder than ‘autism proper’.

The stuff they left out

The current criteria do a reasonably good job at trying to encompass the wide range of behaviours commonly seen in autism, but there are some surprising omissions.

Sensory processing issues is a big one. It’s taken researchers and clinicians an awfully long time to get their collective heads around the idea of autism having a sensory component, yet sensory integration and regulation dysfunctions (extreme over- and under-reactions to pain, actively seeking out or avoiding sensory stimulation) are so frequent amongst kids with autism. Other behaviours like wandering, an underdeveloped sense of danger, coordination difficulties and self-harm are also glaringly absent.

So what does this mean?

Some of these issues have been addressed with the proposed DSM-5 changes, particularly some of the problems with the wording, the acknowledgement of sensory issues and the abandoning of Aspergers as a separate disorder. But the proposed criteria bring a whole new swag of problems however.

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.