About 700,000 people in the UK have a diagnosis of autism, according to the British Medical Association. The actual number of autistic people in the UK is much higher but low awareness of neurotypes and long waiting times means people aren’t coming forward to be diagnosed or are waiting years for a diagnosis. Autism can be diagnosed across the genders, but women and girls are less likely to be diagnosed than men and boys. It takes, on average, six years longer to diagnose autism in girls compared to boys, recent research from Swansea University showed. This is in part because women and girls commonly “mask” many of their autistic traits due to internal and external pressure to “fit in” and conform to society’s expectations of them.
With 223,525 academic staff in higher education across the UK it is reasonable to assume that every university employs staff in one of three categories – diagnosed as autistic; on a waiting list for a diagnosis of autism; or autistic but unaware of it themselves. Early career neurodivergent researchers were “reluctant to disclose their neurodiversity, expecting that they would be misjudged or disadvantaged. Some were fearful that they would be treated differently, viewed as less capable or seeking ‘special treatment’,” a recent study from EnDISC (Enabling NeuroDiverse Inclusive Science Careers) found.
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So, how can higher education institutions help autistic people (diagnosed or not) to be themselves at work?
1. Ensure that higher education staff are trained in autism awareness
Ensure that as many staff as possible undergo autism training situated in a neurodiversity-affirming approach, taught by autistic people. All HR and occupational health staff should be trained as a matter of urgency to improve hiring practices and staff retention. Only 22 percent of diagnosed autistic adults are in any kind of employment. Teams including autistic people should be trained on how to work with someone who is neurodivergent. This will improve the team dynamic and help the autistic person feel part of the team, rather than on the edge of it.
2. Make yourself aware of Access to Work and other forms of support available to autistic people
Access to Work is a subsection of the UK government’s Department of Work and Pensions. It provides support for people applying for or in work, ranging from an autism coach to access to mobile phone apps to support workers. Access to Work does not require a diagnosis and is run on a basis of need. It may be the case that a university employee has already been through this process before disclosing their autism diagnosis or suspected autism their employer. The employer should anticipate the integration of Access to Work funded support and have a clear, documented process that can be followed, particularly if a support worker has been funded.
3. Make your processes clear
Clear and concise processes written in simple, non-legalistic, language will enable an autistic staff member to navigate how they should disclose autism to their employer. Higher education institutions could even create simple flow diagrams entitled “I have an autism diagnosis, what do I do now?” and “I think I’m autistic, what do I do now?” which shows each step of the process. It is critical to establish both processes because an autism diagnosis can take up to seven years from self-referral to a confirmation letter. The outlined process should start with who the person should disclose to, what paperwork HR needs, when occupational health gets involved and so on. If this is available on an intranet, autistic people can mentally prepare themselves for disclosure, understanding what to expect. Then the employer must follow those processes. It is extremely unsettling to an autistic individual to have to deviate from a plan.
4. Mind your language and platitudes
Ableist and pathologising language is rife in academia, even within the occupational health and HR structures that are supposed to support autistic people. Occupational health reports still contain medicalised language around autism, particularly the use of “symptoms” instead of “traits”. Furthermore, the standard comment to an autistic person disclosing is “well, we’re all on the spectrum somewhere”, thus belittling the struggles that an autistic person faces daily.
5. Believe the autistic person and be compassionate
Because of the stigma surrounding autism it is unlikely that someone would disclose autism or suspected autism without grounds. The autistic person has come to you because they need accommodations and help. Your job then is to help them navigate the university’s processes. They will not want to have to defend this disclosure or spend a lot of time and energy explaining autism. They may also be overwhelmed from the recent diagnosis or the recent realisation that has put them on the diagnosis pathway. Ask them how you can help them feel safe and supported and organise regular check-ins so that they have a safe space and familiar face.
These five recommendations only scratch the surface of what higher education can do to support its autistic employees. For more information and in-depth recommendations please visit the National Autistic Society website and read the recent EnDISC report.
Jennifer Rudd is a programme manager and senior lecturer in innovation and engagement at Swansea University’s School of Management.
Jennifer’s advice draws on insight she shared in ResearcHER: The Power and Potential of Research Careers for Women, authored by the Women in Academia Support Network.
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