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 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 at different times – just telling them you are autistic 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 things like 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, you can ask for support from the disability service and other people. At Bangor, we can write a Personal Learning Support Plan (PLSP) for you, which will provide key information to relevant staff in the University. However, this won’t contain details applicable to every situation, and it won’t be visible to every member of staff. It is not visible to any students. This means that there will be situations when it is your responsibility to give people more detail about your diagnosis and explain what that means for you.

Even if somebody knows that you are autistic, it doesn’t mean they know how it will affect you, nor does it mean they will be 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 hard to explain autism-related difficulties, which might partly be because before uni other people did this 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 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”)

3) 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)

4) 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 autism-related issue.

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 being autistic means that the stigma some people feel around autism is more likely to go away. Start with people you can trust, and discuss 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 use.

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.