Anxiety is a real difficulty for many adults with autism or Asperger syndrome. It can affect a person psychologically and physically. This guide talks about the different ways you can manage anxiety, from keeping a diary to learning relaxation techniques and getting support from others in a similar situation.

Anxiety can happen for a range of reasons and people with autism or Asperger syndrome can vary in their ability to cope with it.

Understanding emotions can be difficult for people with autism. By helping someone to understand anxiety, you can help them to manage it better. Resources such as those sold by Incentive Plus as well as the Autism Research Centre's CD ROM, Mind reading, can help teach someone with autism to recognise emotions.

Anxiety can affect both the mind and the body, and produce a range of symptoms. The psychological and physical symptoms of anxiety are closely linked and so can lead to a vicious cycle that can be difficult to break. The psychological symptoms of anxiety are:

  • easily losing patience
  • difficulty concentrating
  • thinking constantly about the worst outcome
  • difficulty sleeping
  • depression
  • becoming preoccupied with or obsessive about one subject.

Its physical symptoms include:

  • excessive thirst
  • stomach upsets
  • loose bowel movements
  • frequent urinating (going to the loo)
  • periods of intensely pounding heart
  • periods of having gas
  • muscle aches
  • headaches
  • dizziness
  • pins and needles
  • tremors.

If you do experience any of these symptoms, it is important to also get medical advice to rule out other medical conditions.

Strategies for managing anxiety

Once someone understands anxiety and has identified the things and situations that make them anxious, they can then take steps to cope with the anxiety. If you are looking after someone with autism, try and be aware of what makes them anxious and how best to help them manage certain behaviours.

Keep a diary

To help someone with autism understand anxiety, get them to understand the symptoms they display when they are anxious and to look at the causes of their anxiety. Keeping a diary in which they write about certain situations and how these make them feel may help them to understand their anxiety and manage it better.

Use the diary also to think about the physical changes linked to anxiety. Someone with autism often retreats into their particular interest if they are anxious about something use the diary to monitor this as well:

Time and date

Situation

How I felt

How anxious? (out of 1 to 10)

                       

Meltdown prevention plan

Create an anxiety plan when someone with autism is feeling positive about things. An anxiety plan is a list of things and situations that cause anxiety as well as solutions and strategies they can use to help them manage their anxiety levels. The plan can be adapted, depending upon how well someone understands anxiety:

Situation

Symptoms of anxiety

Solution

Going on the bus. Hearts beats fast; sweat and feel sick. Have stress ball in pocket.
Squeeze the ball and take deep breaths.
Listen to music.

Relaxation techniques

Someone with autism can find it very difficult to relax. Some people with autism have a particular interest or activity they like to do because it helps them relax. If they use these to relax, it may help to build them into their daily routine. However, this interest or activity can itself be the source of behavioural difficulties at times, especially if they're unable to follow their interest or do the activity at a particular moment.

Some people may need to be left alone for short periods of the day to help them unwind.

Physical activity can also often help to manage anxiety and release tension. Using deep breathing exercises to relax can be helpful as can activities such as yoga and Pilates, which both focus on breathing to relax. Use a visual timetable or write a list to help remind the person when they need to practice relaxation.

Any other activities that are pleasant and calming such as taking a bath, listening to relaxing music, aromatherapy, playing on a computer may also help reduce anxiety. Some people may find lights particularly soothing, especially those of a repetitive nature, such as spinning lights or bubble tubes.

You may need to encourage adults who are less able to take part in these activities so that they can enjoy their benefits. You can do this by explaining when and where they will do the activity and what it will involve. You may have to go along with the person at first and do short periods of activity to begin with.  

Talking about anxiety

Some people with autism find direct confrontation difficult. They may therefore be unable to say they dont like certain things or situations, which will raise their anxiety levels. If they identify they are anxious, they could use a card system to let family or friends around them know how they are feeling. At first, you may need to tell them when to use the card and prompt them to use it when they do become anxious.

They could also carry a card around with them to remind themselves of what they need to do if they start getting anxious. You could also give them a stress scale that they can use whenever they find something particularly stressful.

It may help them to buy our Autism Alert card (www.autism.org.uk/card), which is the size of a credit card. They can use the card to let members of the public know they have autism. The Autism Alert card is available from NAS publications (see contact details below).

Getting support from other people with autism

Personal accounts

It may help someone with autism to read the personal accounts of other people who also have autism, and to see how they dealt with certain situations and managed any anxiety they experienced. A number of people with autism have written personal accounts of their experiences:

*Glass half empty, glass half full: how Asperger's syndrome has changed my life by Chris Mitchell

*Making sense of the unfeasible: my life journey with Asperger syndrome by Mark Fleisher

*Thinking in pictures by Temple Grandin

We also produce a quarterly newsletter called Asperger United. It is written by people with autism and includes personal accounts of having autism. Find out more at www.autism.org.uk/aspergerunited

Online resources

The following online resources may be helpful to someone with autism as they are all aimed specifically at people with ASDs.

Aspies for Freedom (AFF)
Website: www.aspiesforfreedom.com
This site has a range of forums and a chat room, articles and lots of information and aims to help build the autism culture.

AS Support Group Online
Website: www.assupportgrouponline.org
This website is run by Emma Thomson, who has autism. It has lots of information, including a blog.

The National Autistic Society (NAS)
Website: www.autism.org.uk
This is on the NAS website and includes personal stories, thoughts, reflections, short films, articles and lecture transcripts about life on the spectrum from people with ASDs.

#Asperger
Website: www.inlv.demon.nl/irc.asperger
This website is for people with ASDs and its priority is to provide support.

Coping: A survival guide for people with Asperger syndrome
Website: www-users.cs.york.ac.uk/~alistair/survival/
This website includes chapters from a book by Marc Segar, who had autism. Coping: A Survival Guide for People with Asperger Syndrome has tips and advice on how to cope with a range of feelings, written from the perspective of someone with autism. For example, Marc not only talks about the unwritten rules about behaviour, but offers lots of tips and advice.

Wrong Planet
Website: www.wrongplanet.net
This website is designed for individuals and parents of people with ASDs. It has a discussion forum, a section for articles, how-to guides and a chatroom for real-time communication.

The resources on external websites are provided for your help and information only. They are sites maintained by other groups, organisations and individuals and are provided in good faith. The presence of a website does not necessarily imply that the NAS endorses or supports the originator(s), nor does the absence of a group imply that the NAS does not support it, and cannot be held responsible for the quality of the information provided.

Support groups

Going to a support group for people with ASDs means meeting other people with ASDs, which can be helpful in some cases. Different support groups will offer different activities, from going on outings to discussion groups about particular topics. Go to www.autism.org.uk/directory for information about support groups in the UK. You can also contact our Autism Helpline to help find various services.

Getting specialist help

Some people with autism are not able to identify their anxiety or to put in place strategies to manage it on their own. A specialist or a counsellor with experience of ASDs may be able to help them. Our Autism Helpline has details of counsellors and specialists in different areas.

Further information and contact details

Incentive Plus
6 Fernifield Farm
Little Horwood
Milton Keynes MK17 ORP
Tel: 0845 180 0140
Website: www.incentiveplus.co.uk  
Incentive Plus sells a range of resources to promote social and emotional skills.

Recommended reading

Attwood, T. (1993). Why does Chris do that? Some suggestions regarding the cause and management of the unusual behaviour of children and adults with autism and Asperger syndrome. London: The National Autistic Society

Attwood, T. (2006). The complete guide to Asperger's syndrome. London: The National Autistic Society

Bourne, E. J. (2005). The anxiety and phobia workbook. USA: New Harbinger Publications

Cuomo, N. (2007). Integrated yoga - yoga with a sensory integrative approach. London: Jessica Kingsley Publishers

Ghaziuddin, M. (2005). Mental health aspects of autism and Asperger syndrome. London: Jessica Kingsley Publishers

Greenberger, D. and Padesky, C. A. (1995). Mind over Mood: Change how you feel by changing the way you think. London: The Guildford Press

May, F. (2005). Understanding behaviour. London: The National Autistic Society

Mind. (2006). The Mind guide to relaxation. London: MIND

Trickett, S. (1997). Coping with anxiety and depression. London: Sheldon Press

Williams, D. (2003). Exposure anxiety - the invisible cage. An exploration of self-protection responses in the autism spectrum and beyond. London: Jessica Kingsley Publishers

Wing, L. (2006). What's so special about autism? London: The National Autistic Society


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