Telling people about your autism at university is also known as ‘disclosure’ or ‘declaring a disability’. More information about what this means and why it might be important to you is available in this article. By talking about your autism and advocating for yourself, you make an important step towards feeling comfortable with others. This activity introduces the advantages of being open about your autism, and give some practical tips.

What do we mean by declaration?

You might not consider your autism to be a disability, but that’s how organisations like universities recognise that you may have some additional needs and the declaration prompts the university to make contact with you in order to explore any needs you may have and the support options available to you. 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.

Why is it important to declare?

Some students don’t tell anybody at university about their autism, not even the university itself. Not declaring 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 this may be the same at university. However, university is very different from school and college and there is a wide range of support available. Imperial College 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 university. To find out more about the support available and to consider what, if any, adjustments are required to ensure you have the best possible university experience it is essential to declare to the university via the Disability Advice Team. Even if you decide not to declare prior to your arrival at university or when starting your studies you can register with Disability Advice at any point throughout your studies.

When I declare, who will find out?

When you declare, either on your application form or directly to the Disability Advice team, this is a confidential process. Your Disability Adviser will discuss with you what, if any, information needs to be shared and who it needs to be shared with. The Disability Advice team will not tell the other students on your course; information is only shared with staff who are required to make adjustments, or with those who would benefit from being aware. Further guidance about how we manage your information can be found here. In order to enable your tutors to understand a bit more about you, and be able to support you, it is essential to agree to this information being shared. In addition to this, you may wish to speak to your course team about particular elements of the course and any concerns you have. Your Disability Adviser would be happy to support you with this if you would like them to. You may also decide to share information with your peers where you think it may be helpful to understand a bit more about you, but this is entirely your choice.

In the past, your parents or teachers or other people who helped you might have done most of the talking – they knew all about you and could help explain to other people how an autistic spectrum condition affected you socially and educationally.

What do other people want to/need to know?

Different people need to know different things about your autism at different times – just telling them you have the condition doesn’t give them enough information.

Your friends don’t need to know about the definition of autism, but you will make more sense to them if they know why you are anxious around social events, react in certain ways, experience sensory stuff differently or have certain things you need to do in order to feel comfortable, and it means you don’t have to pretend to be someone else around them.

What happens when students don’t declare?

The Autism&Uni research surveyed people with experience of attending and/or completing university, over 70% of those surveyed said they didn’t tell anyone they were autistic. Some students were not diagnosed until after university.

Research suggests that students who were diagnosed before or during university and declared their autism were more likely to complete their course and get good grades.

However, of the 70% of students we surveyed who chose not to declare, those who left university prior to completing their course, told us it was because they now realise that they needed support with some aspects of university. Even though in general the students got good marks when they submitted work, they said that they struggled to manage without any support, especially early in the course.

Some students also felt that they were unintentionally bullied or excluded by other students, who may have been more understanding if they knew that they were autistic. Imperial College takes reports of bullying very seriously and encourages any student who feels they have experienced bullying or hate crime to seek support and/or report the incident.

Several of the students who left their course prior to completion and then returned to their studies later, said that they had a better experience because people knew they were autistic, and this meant they were able to access support and get on better socially. These students told us that getting support as early as possible, preferably from the start of course, made settling into university a lot easier as it is such an uncertain time, in spite of also being an exciting time.

Getting support in those first few weeks, even simple things like someone showing you around the campus and 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 in some situations, this meant that their work or/and wellbeing was affected.

It takes time to process applications for support and send information to the relevant people, so the earlier you can inform the university the better. You don’t have to wait for exam results (e.g. A-level results) or a confirmed place at university, you can contact us now – even if you end up going somewhere else.

Fern: I think it is good to disclose as university is much bigger than school and so there is nobody making sure everything is ok and you are managing. (read the whole article here)

At university, while you can ask for support from the disability office and other people, and some paperwork can be passed on to your department, it’s your responsibility to tell people about your diagnosis AND to explain to them what that means for you.

Even if somebody knows about autism and Asperger Syndrome, it doesn’t mean they know how it will affect you or that they are aware that there are positives as well as negatives to the condition.

90% of parents in our Autism&Uni survey said they had to advocate for their children so they could receive the support they need at school. Students in the surveys said they find it difficult to explain difficulties related to their autism, which might partly be because, before uni, other people were on hand to do it for them.

“I’m always afraid of being turned away or not being able to explain myself well, or being misunderstood and having that change the way I’m treated.” (Autism&Uni survey response)

So it’s really important to think about not just who you tell or how, but what you tell people who can help you and how comfortable you feel with explaining your needs. It’s like learning how to complain about something effectively…

HOW TO COMPLAIN

1) State the problem clearly and unemotionally (for example: "I found a hair in my sandwich")

2) Explain without getting angry what the consequences were for you (for example: “I didn’t get to have any lunch that day because I didn’t have time to come back to the shop”)

4) Tell the person you’re complaining to exactly what you’d like them to do about it without being rude (for example: apologise, give you a full refund, make sure staff are trained on this issue)

5) Be clear when you need it doing by (for example: Friday 5pm, the end of the month, within 48 hours and so on)

Then it’s easy for the person responding to agree and make things right. You have to make it similarly clear and easy for people to understand and help you when you have an issue related to your autism.

But it’s hard not to get emotional or angry when people don’t seem to get it. It’s your life, not just a sandwich.

In some ways, making a decision to tell the university officially about your autism has obvious benefits with clear boundaries. Declaring means you can access support. The university will tell you what information and evidence they need from you and will not pass any information on without your permission.

If you decide not to declare on your application form, or have not received a diagnosis, you can tell the university at any time throughout your studies by contacting the Disability Advice Team to talk through your options and what this means if you have any concerns about declaring.

Talk to friends and family about declaring. They may be able to offer a different perspective and help you plan what to do.

Being open about your autism means that the stigma some people feel around autism is more likely to go away. Start with people you can trust and specific issues you think they might notice anyway.

A student told us about her experience of telling her friends:

“Because they are aware I feel slightly more like I can be myself instead of trying to fit in although I also think it helps them accept slight differences.

For social stuff it helps as they are aware they can’t just text me and see if I’m free then but should give me several days’ notice – which is nothing personal towards them, it’s just I can’t just be social instantly.

It also helps that if we meet up to do something they know I can’t cope with loud noises, crowds, lights etc. and will ‘switch off’ in these occasions. “

If academic staff know how autism affects your learning and what might make you less anxious, especially if you tell them in plenty of time, they’re more likely to be able to help you. You need to be specific, and your disability adviser can help you come up with strategies you can share.

Several students told us that if friends know the individual things they are anxious about, like finding new places or understanding assignment questions, they can get a lot of support from them.

Here are some questions that might help you to think about declaring:

• Do you want to declare on your application?
• Would you like to talk to the Disability Advice team directly?
• Do you want to access support at the start of your studies? If you do, you will need to engage with the Disability Advice team in good time before you start your course
• Do you want your tutors to know?
• Are there any other people within Imperial College you would like to know (in order that adjustments can be implemented)?
• Would you just like to access support from DSA but not tell your tutors (this will prevent adjustments being implemented)?

This article was contributed by the Leeds Beckett Disability Advice Team and Dr Laura Collopy, Imperial College London Teaching Fellow.