By talking about autism and advocating for yourself, you make an important step towards feeling comfortable with others. This article introduces the advantages of being open about autism, 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 what you needed in order to help you succeed.

What do other people want to/need to know?

Different people need to know different things about autism at different times – just telling them you are autistic doesn’t give them enough information, as everyone is different.

At university, while you can ask for support from the disability team 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, it doesn’t mean they know how it will affect you or that they are aware of the positive aspects and the challenging parts.

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 aspects related to 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 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.

Being open about 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.