Social challenges and supports from perspective of individuals with Asperger syndrome and other autism spectrum disabilities.

Muller E, Schuler A, Yates GB.

There is an unfortunate misconception that people with ASD do not have the same feelings as others do. This study showed that they may be painfully aware of their lack of social skills, and can offer suggestions about what to do about it. This was a study of people with ASD who reported that they had problems understanding social interactions. The purpose was to ask for their opinions about their experiences, and how the think their problems with social understanding could be remedied.

Eighteen people with a diagnosis of Asperger syndrome or other Autism Spectrum Disorder (two of whom had an informal diagnosis not made by a specialist) participated in individual interviews. They ranged in age from 15 to 58. All lived in the San Francisco, U.S.A. area. The participants chose to be interviewed in their own home, the researchers’ homes, or in small room at local universities.

This qualitative study used individual interviews to elicit the participants’ beliefs about the nature of their social experiences. The study was also concerned with what the participants thought would help alleviate their self-identified problems with social interactions. As an aid to ensuring that the study was conducted in an appropriate fashion for people with ASD, an individual with AS helped set up the project. The participants later took part in a meeting at which the study findings were presented, so that they could confirm their accuracy.

The interviews were analyzed and several themes were identified on the problems experienced by the subjects with ASD.

Isolation – feeling apart from others throughout their whole lives. Feeling conscious of being different, out of place, or alone.
Difficulty initiating social interactions – being aware that they did not understand how to start a conversation which was extremely stressful and anxiety provoking.
Communication challenges – feeling unable to understand tone of voice (e.g., sarcasm) and understanding “unspoken” aspects of conversation.
Longing for intimacy – wanting close relationships, romantic attachments
Desire to contribute to their community – the participants reported wanting to help make their community, or the world, better places to live.
Desire to improve social understanding and self-awareness – the participants described reading books about ASD or attending social skills groups to help them interact with other people.

The four themes on how to remedy these problems were:

External supports

• special interest groups where discussion is based on exchanging information, rather than being based on understanding the subtlety and nuance of usual social conversation.

• Structured activities in which there are a set of rules that everyone has to follow, like dance classes, choirs, or bands.

• Talking one-on-one because it is less intimidating, and allows for learning how to understand group dynamics

• Having other people help by initiating the interactions and producing ideas for activities

• Opportunities to observe and model appropriate social behaviours, like how to use eye contact

Communication supports

• Internet-based friendships (e.g., e-mail, chat rooms, listservs) could be helpful because they reduce the stress and anxiety they feel with face-to-face interactions.

• Use of clear language and instruction to spell out what is actually being communicated and what is expected to result from the communication

• The need for clear and direct instruction on body language, facial expressions and tone of voice. Small groups or one-on-one instruction would probably work best.

Self-initiated supports

• Dealing with stress through physical or outdoor activities,

• Engaging in spiritual practices or creative activities,

• spending time alone, or

• using musical instruments or games or objects to take the focus off the person with ASD, instead directing it on an object or action that offers an opportunity for shared enjoyment in a group without having to talk.

The results of this study show that many individuals – ranging from teenagers to older adults – are very aware of their social skills deficits. The themes found in this study show that people with ASD also have a strong desire to learn how to be with others. The suggestions made by the participants could be used in creative ways by those who work with and support people with ASD.

Source: Muller E, Schuler A, Yates GB. Social challenges and supports from perspective of individuals with Asperger syndrome and other autism spectrum disabilities.Autism. 2008; 12(2): 173-190.