By talking about your autism and advocating for yourself, you make 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, teachers or other people who helped you may have done most of the talking about your autism on your behalf – they know all about you and could help explain to other people how an Autistic Spectrum Condition affects you both socially and educationally.
At university you are likely to come across more situations where you will need to talk about your diagnosis AND explain what it means for you, for example, when you have meetings with your Disability Adviser.
So, it’s useful to be prepared for this and to think about the information you would like to share about yourself.
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 to understand you as an individual.
At university, you can give consent for your Disability Adviser to write (with your input) a Learning Support Plan (LSP) to send to your acdemic department. The LSP provides key members of staff within your academic department with information about your autism, the impact that this might have on your learning, along with recommendations for adjustments the department can reasonably make so that you are supported on your course. However, in addition to the LSP, it might be useful for you to have a discussion with your department tutors to provide any further information. This might enable your department to identify other possible support. Sharing your information with your department provides them with more opportunities to help you.
You might decide to tell your friends about your autism. They don’t need to know about the definition of autism, but it might be helpful for them to understand why you are anxious around social events, respond in certain ways, experience the sensory environment 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 Service and other university staff, and a Learning Support Plan 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.
Autism affects everyone differently, so although university staff and friends might have knowledge of autism, they don’t know you or the individual impact of your autism. It’s therefore important that you are able to explain this to avoid people making assumptions about you.
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 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 information you would like to share with people who can help you and how comfortable you feel with explaining your needs. It’s like learning how to complain about something effectively. Here’s an example…
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.
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.
What to do next?
Talk about your autism with people you can trust
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 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.
Questions to think about
Even if somebody knows about autism and Asperger Syndrome, it doesn’t mean they know how it will affect you as an individual or that they are aware of your strengths, as well as any aspects of university that you might find more challenging as a result of your autism.
It will be useful to think about the things that you might find challenging and any types of support that you’ve found useful in the past which have helped you to cope with those challenges. It may be helpful to write the main points down so that you can take these notes with you to any meetings. This way, you won’t forget to tell the university staff anything important.
Is there the option for you to email information to the university staff member that you’ll be meeting with in advance of your appointment? This might help to ensure that you cover everything that is important to you in the meeting.