Thank you to all the people who took part in this study of everyday worry for people with Asperger syndrome (AS). 200 people both with and without a professional diagnosis of AS completed the survey in full. This is a brief summary of the results of that survey and the conclusions reached so far.The people who took partGender:
94 respondents were male and 106 female.Age:
The average age of respondents was 36 years; ages ranged from 18 to 73 years.Diagnosis:
134 people reported having received a diagnosis of AS. 50 people reported wanting a diagnosis of AS and 16 people reported they did not want a professional diagnosis of AS, but they believed AS applied to them.Country of residence:
132 people reported living in the UK, 46 in the USA, 8 in Europe and the remaining 14 were from Australia, New Zealand, Canada and Israel.Education:
27 people left school aged 16 years whilst a majority of respondents had continued into further education. 82 people had undergraduate degrees and 30 people had post graduate degrees.Employment:
78 people reported being in paid employment of some kind and 7 people were retired. The rest of the sample reported a variety of occupations such as being carers, volunteers, home parents or claiming benefits because of disability or while job seeking.Health difficulties:
Respondents were asked if they had experienced certain health difficulties in their life. Of note were the high rates of self-reported (actual diagnosis was not checked) anxiety (86%), depression (82%), self-injury (39%), obsessive-compulsive disorder (34%), eating disorders (23%) and attention deficit hyperactivity disorder (20%).The focus of the study
Every day worries may relate to any number of themes from worrying thoughts about one’s health to worrying thoughts about other people. Previous research indicates that everyday paranoid thoughts in particular lead to significantly increased distress for people on the autistic spectrum. Therefore everyday paranoid thoughts were the main focus of this study. Everyday paranoid thoughts include suspicious ideas about other people (e.g. people are talking about me behind my back) and a reluctance to trust others (e.g. it is safer to trust no one). Different kinds of emotional experiences, sensory experiences and reasoning styles have all been shown to influence the development of paranoid thoughts for people who are neuro-typical (NT ). The main aim of this study was to find out if this was also the case for people with AS, or if we would need to come to a different understanding of the paranoid thoughts of people with AS. If the same factors contribute to emotional distress and paranoid thoughts for people with AS as do for people who are NT, then the therapies and support that are currently offered to people who are NT might also be offered to people with AS.The results
On the questionnaire items that measured different kinds of emotional experience (e.g. social worry, depression or paranoid thoughts) the average scores indicated high levels of clinical anxiety and depression as well as frequent everyday paranoid thoughts among the respondents. Respondents also reported twice as many sensory sensitivities (e.g. when real sounds seem more intense or loud than they should) than people who are NT. On the test of reasoning style many respondents showed a strong preference to find answers to problems quickly because they found uncertainty uncomfortable.
Emotional experience, sensory experience and reasoning style were all interrelated: for example people who found it difficult to bear uncertainty also frequently felt anxious and experienced various sensory sensitivities. Further analysis of the results showed that in this study emotional and sensory experiences appeared to influence the amount of everyday paranoid thoughts a person had. However, the reasoning style of respondents did not appear to influence the number of paranoid thoughts a person had.What do these results mean?
These findings suggest that to understand the distress of a person with AS it is necessary to make sense of a person’s life experience and its links with the beliefs a person has about themselves and other people. For example, respondents reported experiencing difficulties with bullying, unemployment and being misunderstood by others. Some respondents highlighted that the survey was not extensive enough to cover all interpersonal and emotional difficulties.
e.g. “I also thought there should have been deeper exploration of the social difficulties experienced with peers (right from primary school age to further education/employment) as this undoubtedly is the cause of some of the anxiety problems discussed in the survey”
Therapies such as cognitive-behavioural therapy are already successful in helping people who are NT overcome anxious thoughts and might therefore also be offered to people with AS who experience anxiety and request support. Such therapy would for example look at patterns of worry and/or evaluate the beliefs a person holds about themselves and others. Research suggests that interventions for psychological distress should be delivered by a therapist with an understanding and appreciation of Asperger syndrome. Respondents also highlighted that people with AS often have very real threats to manage, for example that they are the target of unpleasant behaviour from others.
e.g. “Answers to questions re someone having it in for me not paranoia - someone does have it in for me at the moment!!!”
Thus, ‘paranoid’ thoughts might be an appropriate reaction to difficult life circumstances. Therefore, interventions at a community level will also be important: for example, advocating for a greater understanding of Asperger syndrome in the work place, family home or local area, and, on a wider scale, the tolerating of differences between people. In addition, we know little about the influence of sensory experiences on mental well-being, but sensory experiences are shown to be important in this study. It might be that education and awareness building around individual sensory experiences may be helpful, but this needs more research. Overall the results suggest that further research should look at understanding the real life experience of people with AS, how this contributes to emotional well-being and how this might translate into effective interventions for different forms of psychological distress.
Thank you to everyone!
This study was completed as part of my Doctorate in Clinical Psychology. For the title of this work I used a quote from one of the respondents of this study, “I wish people were nicer to me; I am doing my best”. A particular thank you goes to that person. The work was well received under peer review and I have presented it at the British Behavioural and Cognitive Psychotherapy Conference 2007. I am now writing the results up for further publication. It is important to share the findings widely to ensure that as many people benefit from your efforts in taking part as possible.
Thank you once again and should you have any questions then please contact me at the address given below.
Pippa Hembry, Clinical Psychologist.
Address: Royal Holloway, University of London, Department of Clinical Psychology, Surrey TW20 0EX