By talking about being autistic and advocating for yourself, you make an important step towards feeling comfortable with others. This activity introduces the advantages of being open about being autistic, and give 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 being autistic 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.

At university, while you can ask for support from the Disability Service, and some paperwork can be passed on to your department, you can decide whether to tell people about your diagnosis and how much to tell them about what this means for you. 

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 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 being autistic, which might partly be because, before university, 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 find the canteen too bus and noisy to eat in)

2) Explain without getting angry what the consequences were for you (for example: If I have lunch there I find I am too tired to cope with afternoon classes)

3) Tell the person you’re complaining to exactly what you’d like them to do about it without being rude (for example: could we go for lunch earlier; I’d like to eat lunch alone and join you later; could we eat lunch in a different place).

4) Be clear when you need it doing by (for example: could we start that today?)

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 being autistic.

But it’s hard not to get emotional or angry when people don’t seem to get it. But if it’s important to you, it’s worth seeking support if this is not something you can change alone.

Being open about being autistic is a personal choice. 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 being autistic 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.