This article is around the issues of telling people that you are autistic – also known as ‘disclosure’ or ‘declaring a disability’.
We’re talking about disclosure here because so many students don’t tell anybody at uni about their autism, not even the university itself.
Not disclosing makes it difficult for students to get the support they need, both officially and from their friends and the other people around them. At school or college, you might not have received or even needed any support outside your family, and if you don’t know anyone at uni who knows about your diagnosis then you don’t have to tell anyone about it. However, university is very different from school and college and the help available can level the playing field so you can concentrate on enjoying your time at uni and doing well on your course.
What do we mean by disclosure?
‘Disclosure’ in this context means telling people that you have a disability.
You might not consider your autism to be a disability, but that’s how organisations like universities categorise it so they can understand their students and give them support if they need it. Telling the university you have autism does not mean that you have to tell everyone you meet if you don’t want to, and nor does it mean that you will be forced to accept support you don’t want or need.
Disclosure and accessing support
Disclosure is a necessary part of getting academic and/or financial support for any issues you might face related to your autism.
Whether or not you apply for Disabled Students Allowance (DSA) and get any financial support to help with your studies, the university needs to know that you have an autistic spectrum condition in order to make any ‘reasonable adjustments’. If you need extra time in your exams, a different location for exams, longer library loans and access to study spaces for disabled students, you need to tell the uni. You will usually need DSA to pay for things that cost money like mind mapping software, equipment for recording lectures, note takers and specialist mentors.
Why don’t some students disclose?
Many autistic students don’t identify as disabled, so they don’t tick the disability box on the UCAS form or any other paperwork.
Even if they never need support or reasonable adjustments, it’s helpful for the university to know how many autistic students they have so they can take the needs of people on the spectrum into account when designing and updating buildings, courses and services.
If you’d like to read more about reasons students gave us for not disclosing and how our disability team responded, read Kate Dean’s article (Kate is Disability Advice Manager at Leeds Beckett University).
What happens when students don’t disclose?
Autistic students are more likely than other students to drop out of university, and this number rises for those who aren’t open about their autism.
When we surveyed people with experience of attending and/or completing university, over 70% said they never told anyone they were autistic. Some of them were not diagnosed until after university. Students who were diagnosed before or during university and disclosed their autism were more likely to finish their course and get good grades.
70% of ex-students we spoke to said they never told anyone at university they were autistic
Those students who dropped out told us it was because they realise now they needed support with some aspects of university.
Even though in general they got good marks when they submitted work, they struggled to manage on their own, especially early in the course. They felt that they were unintentionally bullied or excluded by other students, who would have been more understanding if they knew that they had autism.
Several students who dropped out went back and completed university later, and they had a better experience because people knew they were autistic and they were able to access support and get on better socially.
How could this affect me?
If you get support as early as possible, preferably from the start of course, settling into uni is a lot easier.
Starting uni is an exciting time, but like any change is stressful for anyone. It can be particularly stressful if you are on the autistic spectrum because it involves so much uncertainty. It’s also a very busy time for the university, with lots of new students arriving and familiar ones returning. Getting the support you need in those first few weeks, even simple things like someone showing you around all the places where your lectures will be held can be really important. In our surveys, lots of students didn’t tell anyone they were autistic until they were already really struggling, and that can be too late for it not to have an effect on you and your work. It takes time to process applications for support and send information to the relevant people, so the earlier you can do it the better. You don’t have to wait for your results. You can get started with help from your firm choice university now – even if you end up going somewhere else.
When I disclose, who will find out?
Telling the university that you have autism doesn’t mean you have to tell everyone – it’s a confidential process.
The disability support team won’t tell other students and they will ask you before sharing any information with other parts of the university like your department. It also doesn’t mean that every member of staff automatically knows everything, even if you do agree for the information to be passed on.
Sometimes tutors are given lots of information from the disability office or the disability contact in the department, sometimes not much, and it doesn’t always help the tutor understand how your autism affects you in relation to the course or specific assignments. Knowing that you are anxious about social situations, for example, doesn’t tell them that in group work, you are worried you will have to do all the work or that you might feel left out in discussions
It’s good to agree that the information is passed on, but you will still probably have to do some of the legwork yourself, and just because your fellow students don’t have to know you are on the autistic spectrum, it doesn’t mean that it wouldn’t be helpful for you to tell them.
What to do next?
Decide who you tell about your autism
Making decisions about who to tell and when can be difficult, so we have some questions here that will help you plan what you are going to do.
In some ways, making a decision to tell the university officially about your autism is a simple one with obvious benefits and clear boundaries. Disclosing means you can access support. They tell you what information and evidence they need from you and they can’t pass any information on without your permission. You can tell them any time, but if you tell them as soon as you can it’s better for everyone.
With other groups of people and individuals it’s less clear, and the right path for you is something you need to work out for yourself.
Questions to think about
Here are some questions that might help you to think about it.
- When are you going to tell people?
- Who are you going to tell?
- How are you going to tell them? (in person, on the phone, via email/text/social media, in a group, on their own)
- How much are you going to tell them?
- Can you trust this person?
- Does this person have your best interest at heart?
- Do you mind if they tell other people?