Introduction

People on the autism spectrum can experience social isolation. We'll look at the possible reasons for this, and ways in which people, their family, friends and carers can improve matters.  

Possible reasons for social isolation

Many people with autism, including Asperger syndrome, experience social isolation. This may be due to a range of reasons. For example:

  • the person may prefer to be on their own and enjoy their own company
  • adults with autism may want to engage with others but lack the skills to do so
  • some people with autism find it difficult to maintain contacts due to a lack of understanding of small talk and other conventions of social behaviour. You can find more information about social skills on our website at www.autism.org.uk/socialskills 
  • a bad experience in a social situation in the past may have been generalised and the person with autism is now trying to avoid a repetition of this negative experience
  • some people with autism may need a higher level of support for activities than their family, friends and/or carers are able to provide
  • a person with high-functioning autism or Asperger syndrome may live independently, without family, support workers or a social network
  • the person with autism or their family, friends and/or carers may not know about suitable activities in their local area.

Ways to deal with social isolation

Encouraging social interaction

If you are supporting a person with autism who feels isolated, try discussing why this is the case. Some people with autism may need time to themselves if they find it difficult to be around others for long periods of time. It is important to respect this. But it is also worth talking about the benefits of having a network of contacts, for when they want company or need support.

If you feel that the person with autism is engaging in an activity on their own for an unusually long time (eg playing computer games), you might discuss drawing up a person-centred plan, to include their hobby in a timetable which includes other activities. In some cases a visual timetable can be a useful way of showing how much time is reserved for a certain activity. Our Autism Helpline has written an information sheet called Organising, sequencing and prioritising that you may find useful.

If the person with autism needs a more structured plan for support, look for a person-centred planning facilitator. These are skilled individuals who involve everyone in the person's life in their 'relationship circle'. They also encourage and support the individual to take control of their own plan. See our information sheet Person-centred planning for more details. 

Our information sheets about using visual supports, and obsessions, repetitive behaviours and routines, may also be helpful.

Overcoming restrictive routines

For many people with autism the world is a very confusing place. Routines can provide reassurance and comfort, but can limit social interaction with other people. 

In order to overcome restrictive routines, try to gradually introduce change by identifying one new place to go to every week, for example a local shop. Try to focus on places where it is possible to meet new people.

In time, a person may move on to getting to know the people they see regularly. Practising a few bits of small talk, such as 'How are you today?', can help to reduce anxiety about making social contact with people.

Managing anxiety 

If the person with autism has difficulties with social skills and anxiety, these will need to be addressed if they want to develop their social life. This can be done in a variety of ways, according to the person’s specific needs. For example, if they are experiencing extreme levels of anxiety in social situations, it might be useful to talk about this with the person's GP. A medical professional should be able to offer support and advice and may be able to signpost them towards support services.

Our Autism Helpline has written some information for health professionals which can be taken to medical appointments. Visit the section for health professionals on our website to download this information. 

Qualified counsellors can often offer information on techniques that may reduce anxiety and improve social skills. Sometimes advice can be provided via the phone or email or a home visit may be arrange, if travelling is an issue for the person with autism.

The NHS often offers counselling following a GP’s referral but you may also to seek advice directly. It is important to contact a qualified counsellor with specialist knowledge and understanding of the autism spectrum. The Autism Helpline has a database of counsellors and psychotherapists, and can help you to find counsellors in your area. Call 0808 800 4104 (open 10am-4pm, Monday-Thursday and 9am-3pm Friday).

Social skills groups

Social skills groups offer practical help and advice by focusing on improving those skills that are vital for social interaction. Again, our Autism Helpline can tell you about social skills groups in your area, or you can search online through the Autism Services Directory: www.autism.org.uk/directory.

Books and other information

We sell a range of books, some written by people with autism, which address a range of subjects and reflect on people's experiences of tackling different issues. See the section 'Useful reading' for a short list of titles, or visit www.autism.org.uk/shop 

Our Autism Helpline has written information sheets called Social skills and Anxiety, which offer some helpful tips on further developing social skills and managing anxiety.

Ways to deal with social isolation 

Support to get involved in social activities

Many people with autism need a great deal of support if they are to get involved in social activities. Family, friends or carers may be unable to meet these needs. If the person with autism doesn’t have a support network or needs additional support, it is a good idea to request a community care assessment from the local social services department.  

Anyone with a diagnosis of an autism spectrum disorder is entitled to a community care assessment, whether or not they receive benefits or live independently. Adults who do not have a formal diagnosis of autism are still entitled to a needs assessment in line with the principle of the NHS and Community Care Act 1990.

Our information about community care tells you more about assessments. 

Social groups and special interest groups

There are lots of different types of social groups around the country, many of which focus on their members’ shared special interests (such as sports, reading, art or religion). People with autism may find joining a social group where the members have similar interests to their own very beneficial. Having a common ground, something all members enjoy talking about, makes it easier to start and maintain a conversation.

Here are a few tips on how to find out about local groups.

  • Local councils are often a good staring point for enquires as some list all activities in the area.
    Local newspapers or specialist magazines often have a section about groups and activities taking place in the area.
  • Libraries, cafés and adult education centres often have noticeboards with details of local groups.
  • If you are interested in sports or keeping fit, contact your local leisure centre or swimming pool. Details of these services can be found on council websites and in local phone directories.
  • If you are interested in the arts, contact your local arts centre and enquire about group talks and activities.
  • If you are in employment you can ask your manager or other members of staff about after-work activities.
  • If you’re interested in going on holiday to meet others, Holidays: autism friendly venues may be a helpful resource.
  • Day centres often arrange activities and trips.
  • Age UK can help you to find local services for older people. Call 0800 169 6565 or visit www.ageuk.org.uk.
  • The University of the 3rd Age provides learning opportunities and activities for older people. To find out more about their programmes, call 020 8466 6139 (Monday-Friday, 9.30am-5.00pm) or visit www.u3a.org.uk.

You may also consider seeking a community care assessment, as this could provide access to helpful organisations and resources in your area. If you had an assessment when you were younger, you are entitled to ask for another one, particularly if you feel that your needs have changed. Contact your local social services department to request an assessment.

Staying safe

It is important to keep safe when going out. If you are going to a new place, take your mobile phone or small change to use a public phone in case of an emergency, or if you need to call someone for any other reason.

It can be useful to carry an Autism Alert card, especially when going out alone. The card can be used in situations where it may be necessary to make members of the public, the police or emergency services aware that the cardholder has autism. The Autism Alert card is available from our online shop.  

Meeting other people with autism

Support groups

For many people with autism, joining a support group can be a way to meet others with the same condition, realise you are not alone, share experiences and make friends. You can ask our Autism Helpline to search for support groups for you (call 0808 800 4104), or search yourself on the Autism Services Directory: www.autism.org.uk/directory.

Online support and autism websites

The NAS has an online community that people with autism, their family and friends (as well as professionals and carers) can join. Members discuss a wide range of subjects. To get involved, visit www.autism.org.uk/community.

Meetup

Meetup is a website where you can set up, or join, online groups and get in touch with others. There are autism and Asperger syndrome Meetup groups. Visit http://autism.meetup.com/ or http://aspergers.meetup.com/.

Independent living on the autistic spectrum

InLv is a members-only online support group for people on the autism spectrum. Having signed up to the mailing list, people on the autism spectrum can exchange experiences via email, visit other members’ websites and also list their own: www.inlv.demon.nl

Asperger United

This quarterly magazine features contributions from people with Asperger syndrome, high-functioning autism and other high-functioning conditions on the spectrum and can be subscribed to for free. Contributors share their experiences in the form of articles, poems, artwork and short stories. There is also a pen pals section.

You can read the latest issue of Asperger United and subscribe at www.autism.org.uk/aspergerunited. You can also call +44 (0)20 7903 3595 to subscribe. 

Befriending

The National Autistic Society runs befriending schemes aross the UK. Befrienders are trained volunteers who spend a few hours each week with a person with autism or their family. Some spend time in the person’s home, others go out and about. This regular contact can make a real difference to the life of someone with autism and their family.

You can find more information about NAS befriending schemes on our website.

We also have an e-befriending scheme. If you or a member of your family is on the autism spectrum, an e-befriender can offer regular online support and social contact. E-befrienders exchange emails with you or another member of your family, chatting about things that interest or concern you and offering a friendly, supportive link with the community.

For more information about e-befriending and how to apply for an e-befriender, please contact our E-befriending Co-ordinator, Danielle Thompson at e-befriending@nas.org.uk or write to:

Danielle Thompson 
The National Autistic Society
6&7 Village Way, Greenmeadow Spring Business Park
Tongwynlais, 
Cardiff, CF15 7NE
Tel: 02920 629318


 

Circles Network

This national charity offers support to people of any age who are isolated or at risk of isolation. A circle of support, sometimes called a circle of friends, is a group of people who meet regularly to help an individual accomplish their personal goals. The circle acts as a community around the 'focus person' who is in charge, and decides who to invite to be in the circle.

For more information visit www.circlesnetwork.org.uk, call 01788 816 671 or email info@circlesnetwork.org.uk.

Preparing to take part in a group or activity

  • Once you found an activity that interests you, get in touch with the group leader, find out what the format for the activity is and ask for a brochure or information pack.
  • You may need to become a member of some social groups to attend meetings, which might mean paying a fee. You should ask the organiser about this and find out whether you'd need to make a one-off payment or commit to a weekly, monthly or annual fee.
  • If you are attending a group that isn't specifically for people with autism, it's up to you whether you tell people about your condition. Giving people this information can help them get a better understanding of your needs and the group may be able to offer additional support, should you need it. However, deciding to 'disclose' is a big decision and some people with autism have told us that, for them, disclosing left them vulnerable to bullying. So if you are joining a group where you don't know anyone, you could try talking about this issue with your family or friends, or with the person who organises the group.
  • The social group or activity may take place some distance from where you live so it is important to think about transport. The organisers may be able to tell you about transport links and routes and possibly give you a map. You can also contact your local council to find out about support with transport.
  • Add the activity or group meeting to your calendar.
  • To make sure the activity is right for you, you may try going along as an observer at first. 
  • If you feel you may need additional support to take part in the activity, ask if a family member, friend or carer can come along or if the group could provide some extra support.
  • Don’t feel pressured to attend for the whole of the activity or meeting, or to go on your own - especially at first. Over time you can increase the length of time you stay, eventually aiming to attend the whole session without additional support.
  • Some people with autism find it useful to have a prompt card with them that lists key information on how to start and end a conversation with others. The card may also list ways of dealing with situations that cause anxiety.
  • If you have any issues at the group, discuss these with the group leader so that they can be resolved as soon as possible.

Useful reading

Edmonds, G. and Worton, D. (2006). The Asperger social guide: how to relate to anyone in any social situation as an adult with Asperger's syndrome. London: Sage Publications

Fleisher, M. (2005). Survival strategies for people on the autism spectrum.

Lawson, W. (2006). Friendships the Aspie way. London: Jessica Kingsley Publishers

Murray, D. (2006). Coming out Asperger: diagnosis, disclosure and self-confidence. London: Jessica Kingsley Publishers

Perks, S. (2007). Body language and communication: a guide for people with autism spectrum disorders. London: The National Autism Society

Segar, M. (1997). A survival guide for people with Asperger syndrome. This book offers advice on a range of topics body language and conversation skills to finding friends for life. It is available online at http://www-users.cs.york.ac.uk/~alistair/survival/


Shortcut to this page: http://www.autism.org.uk/isolation