Social interactions and focus questionnaire

Questionnaire contributors and institution at the time of their contribution

• Professor Philip Asherson, King’s College London, Institute of Psychiatry, Psychology and Neuroscience
• Professor Simon Baron-Cohen, University of Cambridge, Department of Psychiatry
• Dr Alysa E Doyle, Massachusetts General Hospital, Harvard Medical School
• Dr Varun Warrier, University of Cambridge, Department of Psychiatry

Yes please. Having information from people who do not have difficulties with social interactions or their level of focus helps researchers to understand why some people develop issues and others do not.

The questionnaire will guide you through the questions based on the responses that you give to earlier questions. This means that you will be asked questions that are tailored to your experiences.

These questions are based upon a questionnaire that is used widely by researchers and health professionals around the world. It asks about similar issues in different ways to develop a complete understanding of these issues. To enable us to fully understand your feelings and behaviour, please answer all of the questions in this section even if you feel that they are repetitive.

If you had these problems in your adult life while you were still in education or were working, please think back to that time and answer the question to the best of your recollection. If you have had these problems for a long period of your adult life but were not in work or education, please consider whether they would be likely to interfere with tasks/activities/hobbies in your daily life that are similar to work or educational assignments (like organising paperwork or balancing your bank account).

It can sometimes feel difficult to know whether a skill is ‘average’ or falls in the average range. Please do your best to place yourself compared to people in the general population. Average means you are generally like most people your age. If you have felt similar to most of the other people (e.g. in your local community or in your workplace), you are likely to be average. If you have noticed that you struggle a little or have a slightly harder time than the people around you in different settings (e.g. friends, colleagues, people in your community), you might be slightly below average. If you have great difficulty, you may be below average or far below average. Alternatively, if you have an easier time with a skill compared to the people you know, you may be slightly above, above, or far above average.

These questions aim to explore the characteristics of your behaviour and ability to focus when not controlled by medication. If you have had different periods of your adult life when you have and have not been taking medication, please answer according to the time in your life when you were not taking medication.

You are likely to have experienced problems with inattention or distractions if you have difficulties related to several of the following: giving close attention to detail; engaging in and sustaining attention on tasks; listening when spoken to directly; following through on instructions; remembering, organising and keeping track of tasks; ignoring internally distracting thoughts; and ignoring external noises and distractions. These characteristics are explored in questions AAL1A-I.

This question is aimed at identifying whether you experience feelings of ‘internal restlessness’, for example feeling as if you want to keep moving/doing things even when you are not supposed to move around or move your body. This feeling is different from involuntary movements that you may experience due to a physical health condition such as Parkinson’s disease, Huntington’s disease, severe tremors or restless leg syndrome. If you experience involuntary movements but not feelings of ‘internal restlessness’, please answer this question as “Average”. If you are not sure, please select “Prefer not to answer”.

You are likely to have experienced problems with physical restlessness or impulsive behaviour if you have difficulties related to several of the following: sitting still without fidgeting; staying seated appropriately in situations when sitting is expected; controlling internal feelings of restlessness or a need for constant activity; engaging in activities quietly; controlling a need to talk excessively; not blurting out answers or interrupting people’s activities or conversations; and waiting for your turn. These characteristics are explored in questions AAL5A-I.

ADHD refers to attention deficit hyperactivity disorder. It is a neurodevelopmental condition, defined by a persistent pattern of inattention and distractibility and/or hyperactive, restless and impulsive behaviour that interferes with someone’s day-to-day functioning. ADHD symptoms tend to develop in childhood but can persist into adulthood. Some adults might also have experienced adolescent or later onset of ADHD characteristics. Research indicates that ADHD may relate to inherited differences in how the brain is organised and how it processes information.

Please visit the NHS website to find more details about the characteristics of ADHD.

ADD refers to attention deficit disorder. Both ADD and hyperkinetic disorder are outdated terms for what health professionals now call ADHD, but a diagnosis of ADD rather than ADHD might have been given in the past if hyperactivity was not present.

Please answer the questions telling us how you feel and behave most of the time in your life.

Please do your best to choose the response category that most accurately reflects your feelings or behaviour in general. If you feel unable to do this, please select “Prefer not to answer”.

Please think back over your answers to the previous section of questions, which explored aspects of your social interactions, approach to life, and way of thinking. Please then consider whether any of these patterns in your behaviour and thinking might be causing issues for you in the areas that we are asking about in questions FI1a-FI1f.

If you have never had any such relationships (with family, friends or social contacts) and consider that social isolation was due to the issues being asked about, please select the option “Very often or always”. If you had these issues at a time during your adult life when you did have relationships, please think back to that time and answer the question to the best of your recollection.

Autism influences how some people communicate and experience the word around them. About 1-2% of the UK population is autistic. Autism is understood as a spectrum, meaning there is a huge variety in autistic people’s experiences. There are various characteristics and behaviours associated with being autistic, and these traits can present differently across individuals.

Please visit the NHS website or the National Autistic Society to find out more about autism.

These questions form part of a questionnaire that is used widely by researchers and health professionals around the world to explore irritability and angry feelings. Please take your best guess at how you think you compare to other people based on what you have seen and experienced in your interactions with others.

If your loss of sense of smell or taste is permanent, please select “Disagree” or “Strongly disagree” in response to these questions. If this is a temporary loss, for example because you currently have a cold, please answer the question according to your usual sense of smell or taste.

Please do your best to imagine if you might be able to tell the difference between two very similar brands of the same savoury or sweet food, even if it is not the particular food mentioned here. This question forms part of a well-established questionnaire that explores sensory perception, so it would be helpful if you could answer all of the questions in this section. If you do not feel able to answer this question, please select “Prefer not to answer”.

Any comments you leave will not be systematically reviewed. If you would like to tell us something that requires our immediate attention or action from us, please call our Participant Resource Centre on 0800 0 276 276 (Monday to Friday 9am-5pm).

Any information you provide will be saved and could be evaluated by researchers in the future (for example, using techniques such as ’natural language processing’). However, UK Biobank does not currently have the resources to undertake this analysis.

• National Autistic Society
• NHS
• Autistica

• AADD-UK (the site for and by adults with ADHD)
• NHS
• ADHD UK
• The ADHD Foundation Neurodiversity Charity

• Neurodivergent people can also be more likely to experience mental health difficulties. Further information on how neurodivergence and mental health are related can be found on the MIND website (tel. 0300 12 33 393)
• The Samaritans: email [email protected] (Freephone 116 123)

• The Samaritans
• NHS

• Harmless
• Campaign Against Living Miserably (CALM) (for men) (tel. 0800 58 58 58)
• Samaritans (tel. 116 123)

• The British Red Cross