Thread by @gailalvares

Our new paper examining the term ‘high functioning autism’ has just been published in @journalautism

journals.sagepub.com/eprint/FS5MZ3G…

Here’s some background into the rationale for conducting this study and what we found @telethonkids [THREAD]

The term 'high functioning autism', sometimes linked to Asperger’s Disorder, was coined ~1980s by researchers to subgroup individuals with autism diagnoses without intellectual disability or cognitive impairment (IQs >70) for research purposes.

However, over time we've seen 'high functioning' enter our common place language, not just in the clinical or research domains; here’s the kicker, though – it’s not actually a diagnostic term, and doesn’t appear in our diagnostic manuals.

When someone refers to someone as ‘high functioning’, this often comes with implicit and false assumptions or expectations that individuals should be able to function at a level appropriate for their age or developmental stage.

Functioning here refers broadly to those adaptive behaviors or skills an individual may need to participate in society, like being able to communicate (verbally or non-verbally), interact with others, or learn daily living skills like self-care or even catching public transport.

While we’ve known for some time that this terms is often not accurate – that many ‘high functioning’ individuals may still have significant functional challenges that require support – unfortunately we have been slow to change our language around this.

Here is some data from PubMed, a research database that indexes articles. When searching for terms like high and low functioning, we see continued and increasing use of high functioning autism. Note: DSM-5 introduced “without intellectual impairment” in 2013

To investigate the accuracy of ‘high functioning’, we used a database called the Western Australian Autism Register. Since 1999, this register has collated data from 6000+ individuals at the time of their diagnosis of autism in the state of Western Australia.

We included data from children (1-18yrs) diagnosed with autism with or without an intellectual disability, ID, defined either by clinical ratings and/or an IQ estimate, and compared them on their functional (adaptive behavior) scores.

Here is a diagram illustrating our inclusion criteria for analysis. Our final sample was 2225 children.

As expected, we observed that autistic children with an intellectual disability do have adaptive scores lower than children without an intellectual disability.

However, when these functional adaptive behavior scores were compared to IQ, in the ~50% of children with IQ scores, here is where we observe a striking difference.

For autistic children without an intellectual disability (ID), adaptive behavior scores were significantly reduced relative to their IQ scores, when compared to those with ID.

This difference between adaptive behavior scores and IQs was consistent across age groups, although adaptive behavior scores alone do show a significant decline with age across groups.

In other words, adaptive behaviors were rated more discrepantly than what IQ estimates would suggest, and IQ is a poor predictor of functional abilities for autistic children without intellectual disability.

In the supplementary, we included scatter plots showing the difference in adaptive scores relative to IQs for each individual ; those without ID are in green. The dashed line represents "no difference" between IQ and functional scores

So, what do we make of these findings? Well, we argue that ‘high functioning autism’ is a misleading label, particularly when based on IQ estimates alone. IQ is not a good proxy for functioning for children at the time of diagnosis.

We argue that we should move away from continued use of this term; many, much more eloquent, individuals in this field have advocated this position for YEARS, but we have been slow to change our language.

Continued use of this term may lead to perpetuating cycles of disadvantage. Funding decisions for services or supports may be based on the incorrect assumption or expectation of greater functional abilities when using this kind of inaccurate language.

This language reinforces use of binary terminology (high/low) or results in the inevitable question about what ‘end’ of the spectrum someone is on.

We suggest that comprehensive strengths-based functional assessments should be conducted at the time of diagnostic evaluation – particularly those assessments that are specifically designed for people on the autism spectrum.

We hope that this research promotes greater awareness of understanding an individual’s strengths and challenges first, rather than seeking to use labels.

We should be striving to work in partnership with our autistic colleagues and community to develop better terminology and a focus on functional outcomes that are meaningful for the community.