By talking about your autism and advocating for yourself, you take an important step towards feeling comfortable with others. This activity introduces the advantages of being open about your autism, and gives some practical tips.

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.

During your time at university, you can meet with a Specialist Practitioner from the Student Disability and Inclusion Team to discuss your diagnosis and how it impacts you in day to day life and how this may impact you in a university setting. With medical evidence, you could have a Student Support Recommendations document (SSR) produced and shared with your Faculty. This document will typically share information about your diagnosis as well as recommended reasonable adjustments for relevant staff to implement. This is shared on a need to know basis and allows the relevant people across the University to be made aware of the support you require.

The SSR document is designed to help communicate the support you require with the relevant stakeholders on a need to know basis. However, in addition to this, students are still encouraged to talk to relevant teaching staff about their diagnosis AND to explain to them what that means for them personally.

Even if somebody knows about autism, 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 who took part in the Autism&Uni survey, conducted by Leeds Beckett university, 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.

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.

The survey conducted by Autism&Uni, spoke to a student 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. “

The SSR shared with academic staff is designed to help them know how autism affects your learning and what might make you less anxious. However, it can really help to have conversations with your teaching staff, to ensure you build up the required support you need and you can discuss the recommendations with them if necessary.

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.

Originally published by Autism&Uni in August 2015. Updated by Anna McCann, University of Southampton (April 2024).