Autism Labels pt. 3 – Implications for Research

Thank you for bearing with me for the long awaited (!) part 3 of autism labels. Blogging had been momentarily put on hold whilst I got up and running with my PhD and settled into my new role.

I am now back with lots more posts up my sleeve and eager to share my early research experiences with you!

First, I will conclude the mini series of autism labels with a brief discussion of how autism and autism severity is labelled in research and why it can be helpful to identify severity.

As a researcher, I want to ensure that I am taking into account the views of the population that I am working with. I also want to make sure that the measurement and conceptualisation of the condition, or indeed, different aspects of the condition are accurate. This will help to present robust and consistent research.

In part 2 we saw how there has been a call for the abolition of functioning labels altogether due to the general consensus in the autism community that they do more harm than good.

Labels in Academia

Autism Spectrum Disorder versus Condition:

Despite the push to change to autism spectrum condition (ASC) as opposed to disorder (ASD), as mentioned in part 1, the DSM-V still uses ASD. This means that the majority of academic literature conforms to their labelling.

However, this term not only has numerous negative connotations, as we saw previously, it also portrays a prescription to the medical model of disability.

It is worth noting that this does vary according to location and appears to be linked to the approach by the local authority. In Brighton and Hove, there is a greater use of ‘condition’ (although there are many inconsistencies here).

In our lab particularly, we choose to use condition to demonstrate our views that an individual is not disordered should they have autism and that we affiliate more closely with the social model of disability.

It will be interesting to see what changes the DSM-VI will bring when it arrives!

High/Low Functioning:

Interestingly, there is an abundance of the use of functioning labels in academic research; this is despite these terms not being used in diagnosis or in the DSM-V. They are used descriptively in some settings, particularly in social care or for ease of referring to individuals who could fall at either end of the spectrum.

Should these terms really be adopted into our academic writing?

Given the dissatisfaction conveyed about these terms from the autism community, I believe that we should be responsive to this and move away from these labels. There are reasonable, less negative alternatives.

What about Severity?

Exactly! Severity labels appear to be almost entirely absent in academic papers. This holds true for research that has been published following the release of the DSM-V in 2013.It is entirely likely that both children and adults who are included in research studies do not have diagnoses that correspond to that of the DSM-V. Many would have been diagnosed from an earlier version of the manual.

So, only those aged 4, at most, would have been diagnosed with corresponding severity levels for each of the core difficulties.This does not mean that severity should be left out of academic research. There are scales that measure severity, from the DSM itself and beyond, which researchers could use as a part of their initial assessments.

For a great blog post and an overview of different severity measures, visit Spectrum News, written by Raphael Bernier.

Why do we need to identify Severity?

To ensure samples are representative of the autism population:

Given the huge variability in autism, it is important that a representative sample is obtained. That is, a whole range of people with different ages, abilities, strengths and difficulties should be included in the research sample. This will help to ensure that the findings from our studies are truly reflective of what is happening in the real world.

Currently a wealth of research in autism is focused upon individuals termed as ‘high functioning’. Now, we now that this term is misleading in itself; however, it does highlight that the current literature base is bias towards those with, seemingly, less severe symptoms.

Therefore, identifying severity can allow research to be inclusive to people from across the spectrum. This would either: enable a representative sample, or may help to direct research towards a narrower population within those diagnosed with autism.

To target and design interventions:

Designing interventions for people with autism is tricky, again, given the heterogeneity of the symptoms.

Interventions tend to be targeted to specific difficulties and/or symptoms and therefore particular groups of individuals on the spectrum. Thus, a measure of severity or functioning in particular areas, such as social communication, is valuable to ensure that you are directing an intervention to a population that really needs it and not rolling it out to the wider autism population, which may find other interventions more useful.

Again, there is no need for functioning labels to rear their ugly heads here. We can use specific measures, or indeed severity levels, to assess the symptoms that are the target of the interventions.

Another way around the issues

Sample sizes:

  • A way around unrepresentative samples would simply be to strive for greater sample sizes in autism research. Typically, sample sizes are small because it is notoriously difficult to gain large sample sizes in autism research. However, the larger the sample, the more likely that it will be representative of the population of interest.

Highlighting the issue of small sample sizes to an audience of autism researchers would likely receive a chorus of “we know, we know”!

  • The difficulty in obtaining larger samples could be addressed by greater collaboration between researchers and institutions. By working together, researchers across different localities would gain larger samples and more representative samples.

Consistent definitions:

  • I would argue that ensuring that the conceptualisation of functioning and severity should be consistent across studies. Again, functioning labels are ambiguous in themselves, which makes the studies that use these terms incomparable.
Once again, thank you for your patience and keep an eye for new posts on their way about my experiences in my first month of my PhD!

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