What is PDD-NOS?

Autism itself is a heavily misunderstood condition – many prefer to view autism through common myths and stereotypes, rather than really dig down and fully understand what autism truly is and how it affects each individual differently. But particular types of autism are more obscure and misunderstood than others, and PDD-NOS is just about the most obscure ASD there is.

I’ve only ever spoken to a handful of people who were aware of exactly what PDD-NOS was without me having to explain – including those working with autistic people. ‘Autism’, ‘Aspergers’ and ‘Autism Spectrum Disorder (ASD)’ all resonate, to some degree, with the public consciousness – even though the public consciousness’s idea of these is usually wildly inaccurate. But with PDD-NOS, it’s not so much an issue of stereotyping (though these come into play too), at least not at first – rather, a bit like other obscure disabilities like Dyspraxia, the problem is that few know what it actually is.

Once people are made aware of it, however, I’ve found PDD-NOS is also very easy to misunderstand. So here are three things PDD-NOS is – and three things PDD-NOS isn’t.

What PDD-NOS is:

• A form of autism. PDD-NOS, essentially, is a category designed for people who have a significant number of autistic traits but don’t quite meet the rigid criteria for autism and Asperger’s.

• Have highly varying personalities. Since there are so many different ways a person can ‘just miss’ a diagnosis of autism or Asperger’s, people with PDD-NOS are incredibly varied in personality and abilities, even more so than people on the autism spectrum in general. It’s also often called ‘atypical autism’, due to this wide variety. Diagnostic manuals even have different names for different ‘types’ of people with PDD-NOS, such as ‘passive’ or ‘aloof’ sub-categories.

• A relatively new diagnosis. PDD-NOS was only created as a diagnosis in 1994, to recognise the large number of people who weren’t being picked up due to very strict diagnostic criteria for autism or Asperger’s. So it’s understandable that awareness is lower – though given a large number of people with autism have PDD-NOS, awareness still needs to be higher.

What PDD-NOS isn’t:

• A ‘non-autistic’ diagnosis. Because PDD-NOS is often referred to as ‘sub-threshold autism’, this can give the impression that PDD-NOS means the person is ‘almost autistic but not quite’. But PDD-NOS is a part of the autistic spectrum, and it’s an ASD diagnosis just like Autism and Asperger’s Syndrome. And since public awareness of PDD-NOS is low, people with the condition will often just call themselves ‘autistic’ (like I do) for convenience’s sake – whereas people with Asperger’s are more likely to use the official diagnosis to self-define.

• ‘Mild’ autism. There is some truth to this myth; it’s at least more truthful than calling Asperger’s Syndrome ‘mild autism’, since while IQ is not affected with Asperger’s, traits can still be very severe and cause the person great difficulty. PDD-NOS is more ‘mild’ in the sense that, since it’s given when a strict autism or Asperger’s diagnosis can’t be met, people with PDD-NOS will often have fewer autistic traits in one or more areas. But other areas can be far, far more severe, and people with PDD-NOS can experience just as much difficulty as those with autism and Asperger’s, if not more so.

• Non-existent. Since the DSM-V, the American psychological manual, has removed PDD-NOS in favour of ‘ASD Level 1’ (just like it’s removed Asperger’s Syndrome and replaced this with ASD Level 2), there is a tendency for people (those few who’ve heard about it in the first place!) to assume that it doesn’t exist anymore. But the ICD-10, used by psychologists worldwide, still uses the term, and there are plans for the ICD-11, due 2017, to do so too. And people diagnosed under the DSM-IV with PDD-NOS will keep these diagnoses for life. So it’s not as simple as assuming it’s gone away.

That’s not all PDD-NOS is (and isn’t), of course – autism is a very complex condition and psychologists’ classification methods for autism are more complex still. But as a rough guide, the points above are more or less what you should bear in mind if you ever come across someone with PDD-NOS.

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