“Does that mean I don’t have Asperger’s anymore or that it doesn’t exist?”
“He had a language delay when he was 4 so he was diagnosed with autism but now at age 10 he very much fits a more Aspie profile.”
“I have Asperger’s, not autism!”
As most of us are now aware we no longer diagnose separate categories of “Asperger’s” and “Autism” but instead now refer to “autism spectrum disorder” (ASD). From my experience, it was confusing for many families when this change came into practice as they were not sure what exactly this change meant or why it had occurred. I also saw that there were mixed feelings about autism and Asperger’s being merged – some individuals felt it was wrong as they very much identified with Asperger’s but not autism, and others just simply found it confusing. They questioned if it meant whether they no longer had a diagnosis or would need a re-assessment.
Let’s go back a step and look at what actually happened and why, as I think it helps a lot of individuals and their families to understand why the categories were merged and our view of autism being a spectrum.
In 2013 we changed the way we viewed ‘Pervasive Developmental Disorders’ (which was the umbrella term that autism and Asperger’s fell under). For some time, we had viewed autism as being comprised of separate categories including autism, Asperger’s and pervasive developmental disorder – not otherwise specified (which was diagnosed when there were some traits but not enough to meet the criteria for autism or Asperger’s). Autism and Asperger’s were seen as being separate based on differences in early language milestones, as well as differences in communication and intellectual profiles. The new proposal put forward was to merge these three classifications into one – autism spectrum disorder (ASD). This was based on a lot of research which showed:
- there was a failure to clearly distinguish between Autism and Asperger’s e.g. almost all individuals diagnosed with Asperger’s actually met the criteria for autism.
- there was great variation among diagnosticians in how the separate diagnoses were being assigned to individuals.
- there was a higher than expected rate of co-occurrence of autism and Asperger’s in the one family (e.g. some family members were diagnosed with Asperger’s whilst other members in the same family were diagnosed with autism) and so the genetic distinctiveness was questionable.
This prompted us to better recognise ‘autism’ as a continuum from mild to severe. Whilst the merger did make sense from a research point of view, there was a lot of debate in the community regarding the implications of these changes in terms of how it would affect the future diagnostic status of individuals currently diagnosed. More importantly, how would it affect the identity of those who had been diagnosed with Asperger’s!
Not only did we now have a single classification (autism spectrum disorder) but ‘specifiers’ were added in to provide further information. This included whether there were any language impairments, cognitive impairments and known genetic causes. The terms ‘high and low functioning’ have never been a part of the diagnostic criteria however they were, and still are, commonly used by practitioners and the community; high functioning indicating less impairment in intelligence/language and low functioning indicating a more severe presentation.
From my own personal perspective, the new classification and criteria does make sense. I have always viewed autism as a spectrum or a cluster of behaviours which can impact on a person in different ways and in different areas, thereby impacting their everyday functioning in different ways. To me this reflects the idea of a ‘spectrum.’ However, what I have seen consistently in article/blogs is opinion pieces on whether we should use the terms high and low functioning or refer to severity level on the spectrum. Here’s my opinion on that question:
Ask the individual!
It is no one’s right to have an opinion on the ‘label,’ terminology or reference except the person themselves and if it is a little one, their family. They are a person outside of the diagnosis and working out how autism fits in with who they are. Have the compassion to simply ask how they self-identify or listen to how they identify and use the same language. If it is extremely important to them to identify with Asperger’s we have no right to respond with “that no longer exists.” If a parent finds it important to communicate with others that their child has “severe autism” respect and validate this. If it is important that the individual be seen as and referred to as “high functioning” use the terminology high functioning. There is no right or wrong here. The spectrum is a spectrum and I think any terminology is accurate when it means that individual or family finds their place and identity in living on that spectrum. As a diagnostician, I still refer to Asperger’s when I know it is important to the individual I am working with. Nothing has really disappeared and no terminology should be off limits – really all that has changed is that we have developed our understanding of autism. So my advice would be respect the individual enough to find out how they identify!