You may believe that someone you know - be it a partner, sibling, colleague, friend, relative or neighbour - has undiagnosed Asperger syndrome. How do you broach the subject with them sensitively, and deal with the reaction?

Our Autism Helpline is often contacted by people who believe that their partner, sibling, colleague, friend, relative or neighbour may have undiagnosed Asperger syndrome, but are uncertain how to broach the subject with them. This information helps to guide you through this difficult step, from deciding who should raise the subject to broaching it in a sensitive manner and dealing with the reaction.

Who should broach the subject of Asperger syndrome?

Before discussing this delicate matter with the person in question, you must first decide if you are the most suitable person to raise the issue. For example, a teenage child may dismiss it as unwanted interference if you broach the subject with them as a parent; but they may be more likely to listen if it comes from a friend or sibling. Is there somebody else whom the person will respond to better than you?


What is the best way to raise the subject?

In the experience of the NAS Autism Helpline, the most straightforward approach is usually the best. Choose a time when you and the person are alone and both in a positive mood. People are more receptive to ideas if they are relaxed. It would be much harder to discuss Asperger syndrome during an argument, when other people are present, or when the person is feeling stressed or upset.

Before you broach the subject, make sure that you have some information about Asperger syndrome with you. Asperger syndrome is a very complex condition and it is easy to become tongue-tied when trying to describe it. Therefore, it will be helpful to have some written material to hand to help you explain it more clearly. The person can also read the information in their own time.

Broach the subject in the most sensitive way you can. The best way to start your conversation may be to say something like: 'I read something in the paper/heard a radio programme about Asperger syndrome and some of the characteristics sounded familiar, so I contacted The National Autistic Society for more information'.

Remember that Asperger syndrome is a communication disorder, so be careful not to bombard the person with too many details at once. Absorbing spoken language can be very difficult for some people on the autism spectrum; they may find it hard to understand your intentions, read body language or facial expressions. This can cause frustration or anxiety and make it harder for the person to accept what you are saying.

It may therefore be a good idea to read through the information together, so that the person has visual data to refer to alongside the conversation. This may be easier for them to digest than a conversation on its own. See 'Recommended reading and resources' below for some helpful sources of information.

Talking to the person is not the only way of broaching the subject with them. Some people with Asperger syndrome may find it easier to absorb your comments if they are written down, as this removes the difficulties they may face with interaction. You could write them a letter or an email; this will give you time to plan exactly what you want to say and allow them more time and space to digest it.


How will the person react?

People who are told that they may have Asperger syndrome usually react in one of three ways: confusion, denial or relief.

The person may become confused because they have not heard of Asperger syndrome; they may go into denial and claim that their difficulties are the fault of other people; or they may experience a sense of relief because they have always known they were different and Asperger syndrome provides the explanation they never had.

In many cases, you will be able to guess the kind of reaction you will receive. It is important not to dwell on the negatives of the condition and give the person some positive information about Asperger syndrome. If you feel it is the right time you may be able to talk about gaining a diagnosis.

In order to gain a better idea of whether or not they have Asperger syndrome, the person could try taking the Autism-spectrum Quotient test. This won't give them a diagnosis but will help to measure their autism traits; if the person is in fact on the autism spectrum they may be more accepting of the possibility when it is measured in this way than through the things that others notice about them. 

Should we get a diagnosis?

Some people with Asperger syndrome feel that there is little point in seeking a diagnosis as it will not significantly change their life. The decision rests entirely with that person; however, there can be some advantages to gaining a diagnosis.

  • Without a diagnosis, there will always be an element of doubt as to whether the person actually has Asperger syndrome or not. A firm diagnosis can be a relief because it will allow the person to learn about their condition and understand where and why they have difficulties.
  • After receiving a diagnosis, it is easier to gain access to benefits, advice from Jobcentre Plus and autism-specific services such as outreach support.
  • The special employment needs of a person with Asperger syndrome may be better met if they have a diagnosis. They can approach their employer to establish working practices which will ease their problems and difficulties in the workplace. The Disability Discrimination Act may also provide protection from discrimination for the person in employment once they have disclosed their diagnosis.
  • People with Asperger syndrome are often misunderstood. When other people learn about the condition it is easier to empathise with the person's characteristics.
  • It can be helpful to meet or contact other people with the condition. Some groups for people with Asperger syndrome will only accept people with a definite diagnosis, although this is not always the case.


Recommended reading and resources

Books

Attwood, T. (2006). The complete guide to Asperger's syndrome. London: Jessica Kingsley Publishers. Available from www.autism.org.uk/amazonshop

Jackson, L. (2002). Freaks, geeks and Asperger syndrome. London: Jessica Kingsley Publishers. Avaialble from www.autism.org.uk/amazonshop

Ives, M. (revised edition 2008). What is Asperger syndrome and how will it affect me? London: The National Autistic Society. Availble from www.autism.org.uk/pubs

Mitchell, C. (2005). Glass half empty, glass half full: how Asperger syndrome has changed my life. London: Paul Chapman Publishing. Available from www.autism.org.uk/amazonshop

The National Autistic Society (2009). After diagnosis: services and support for children with autism and their parents and carers. London: The National Autistic Society. Available from: www.autism.org.uk/pubs

The National Autistic Society (2009). What next? Services and support for adults with an autism spectrum disorder. London: The National Autistic Society. Available from www.autism.org.uk/pubs

Websites

Asperger's Syndrome Foundation
Website: www.aspergerfoundation.org.uk
The Asperger's Syndrome Foundation promotes high quality support and services for people with Asperger syndrome across the UK.

Coping: a survival guide for people with Asperger syndrome
Website: www-users.cs.york.ac.uk/~alistair/survival/  
This first-hand account of living with Asperger syndrome by Marc Segar has been very influential and helped a great many people living with the diagnosis.