Why students should disclose their autism before starting university

When do you tell people you’re a bit different? Luftphilia, CC BY

When a new university term starts this year so will many students who have an Autism Spectrum Disorder (ASD). In the 1990s there was a surge of highly able young people diagnosed with ASD and today they are approaching university age. The number of students with ASD attending university is also increasing; in 2003-04 it was estimated to be 1.8% of the total student body and by 2007-08 this had risen to 2.4%.

Disclosing a diagnosis is a very personal decision. Many people are reluctant to disclose their diagnosis for fear of negative attitudes from peers. This may be based on childhood experiences, where peers have been less accepting. The concerns of people on the autism spectrum transferring to university in particular throws up a dilemma: they might be able to access potential support services from their university if they declare their ASD, but they may also think this will compromise opportunities to develop friendships and socialise.

In a paper published with my student Lizzie Mills in the journal, Autism, we set out to find out whether this was true and whether prospective students should fear disclosing their diagnosis when they begin university.

Social demands and influences

Decisions to make. William Brawley, CC BY

Students with ASD can have difficulty with the social demands of university life and one significant influence on their academic and social success is peer attitudes. At a summer school at the University of Bath that gives young people on the autism spectrum a taster of university life, a constant theme is how, why, when and what to tell people about one’s diagnosis. Autism Summer School students also often report that it can be difficult to really explain what autism is and how it affects your relationship to other people.

For our research, we presented 120 students with vignettes to read online and then rate how they felt about the situation (we also assessed the impact of knowledge of ASD and self-reported autistic traits on the students’ responses, but these variables were not significant).

An example of the vignettes is as follows:

It is move-in day in halls and you are carrying some of your belongings into your new room. Alex lives in the opposite room to yours. Alex is the same year in university as you, he has Autism Spectrum Disorder and is of above average intelligence. Individuals with Autism Spectrum Disorder sometimes demonstrate difficulty with social interactions and appropriate communication.

You notice that the furniture in the shared living space is arranged in a way that seems to make the space more cramped. A week later, you decide to ask if Alex could help you rearrange the furniture. You start to move around the sofa but Alex gets upset and moves it back to its original position with no explanation. You brush it off and just decide to move around the furniture on your own. Alex sees that the furniture was moved and frantically requests that everything be moved back to the way it was.

The vignettes were adapted from original research in the US and we followed their methodology. The students all read two vignettes, one for someone with a clinical condition (as above) and a second vignette where the protagonist was described as “a typical student”. After reading each vignette, students rated how the situation made them feel on a widely used measure called the Positive and Negative Affect Scale.

Potential peers felt both significantly more positive and significantly less negative when they were made aware of the diagnosis. These findings for university students in the UK are similar to those in the US.

When receiving a diagnosis of an ASD, different labels can be used, such as “autism”, “Asperger Syndrome” as well as “ASD”, but the difference in the clinical label did not have any effect upon student’s responses.

Our findings suggest that students have a more positive response towards peers who display unusual behaviour when they are aware of a diagnosis compared to no awareness of a clinical diagnosis. This would suggest that, despite concerns over disclosing diagnostic status, disclosure can be beneficial in university life.

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