Telling people about your autism

By talking about your autism and advocating for yourself, you make an important step towards feeling comfortable with others. Registering with the Disability Support Service is a formal way of letting the University know you may need accommodations or supports, but this does not mean everyone you meet will know you have a diagnosis of autism (or even understand what that means). It is up to you who you tell or don’t tell – it is your choice.

This activity introduces the advantages of being open about your autism, and give some practical tips.

Background

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.

How could this affect me?

At university, while you can ask for support from the disability office and other people, 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 college 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.

What to do next?

Talk about your autism with people you can trust. Don't feel you need to tell everyone.

Practical tips

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 advisor 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.

Questions to think about

  • Who should I tell about my autism?

 

  • Am I comfortable talking about my autism?

 

  • Do I know my own strengths and challenges?

 

  • Do I know the type of support or adjustments that will help me?

 

  • Am I comfortable asking for help when I need it?