Why are sleep problems so common for autistic people? Can you help find the answer?

Untitled I am a parent of two adults with Autism as well as a student at Birmingham University, UK. I am requesting your participation in a research study to assess parents' beliefs and attributions of sleep problems in ASD, and their experiences of support from health and care professionals.

Parents have a unique insight into their children and have a depth of knowledge can be hugely beneficial to research.

Sleep problems are common in ASD but despite this sleep problems in adults remains a neglected area of clinical research and support. This survey will give you the opportunity to share your views and help provide a little more research in an area of literature that has been severely neglected. I hope you can help.

If you are a parent carer in the UK of an adult family member who is currently experiencing, or has experienced sleep problems during their adult life, I hope you can find time to help with this research. Please click on the following link if you would like to participate:

https://www.surveymonkey.com/s/WS9TSWZ

Thank you. The full research proposal is below for your information

Gen Hartup

Mail to: This email address is being protected from spambots. You need JavaScript enabled to view it. or This email address is being protected from spambots. You need JavaScript enabled to view it.

Tel. 07702480177

Research proposal including aims and objectives; and benefits to people and society:

Sleep deprivation can have a devastating impact on the individual and his/her family's health and well-being. It is often a neglected component of behavioural assessment with few health professionals trained in sleep disorders and few services addressing the issue. The main aims and objectives of this research study is to investigate factors that contribute to sleep difficulties in ASD; assess parent's beliefs and attributions of sleep problems in their autistic adult children; and assess parent's experiences of support.

The participants will be made fully aware of the purpose of the research; how the data collected will be used; how long the data will be kept for; be given guaranteed anonymity and confidentiality; and made aware that participation is voluntary and that they have the right to withdraw from the survey at any time.

Many of the questions in the survey are of a personal nature and may cause emotional discomfort. I will warn parents of this risk and signpost websites and help lines (e.g. Handsel Project; MENCAP; NAS; Contact a Family; and the Challenging Behaviour Foundation) which may help them find support within their local community. I will advice that they contact their GP for a referral to a sleep practitioner if they have serious concerns about the sleep issues.

Any data collected will be used for academic purposes to increase awareness and promote sleep deprivation in ASD as a serious issue that needs addressing within the professional communities.

Details of design, participant population required and what participants are expected to do:

This study is restricted to parent carers of challenging adults with ASD who are currently experiencing or have experienced sleep problems during their adult life.

Data will be collected using an online questionnaire designed in Survey Monkey. Parents may divulge personal and sensitive information about their son/daughter and themselves but can rest assured that any data collected will be completely confidential and anonymous with no identifiable details. They can also be reassured that data entries cannot be traced back to them, I have disabled the IP address tracking in the collector settings before publishing the survey.

There will be no contact with the autistic adult; and no images (still or video) will be collected.

Terms of participation: how much time will participant have to commit to the study? The right to withdraw at any time?

The questionnaire will take approximately 30 minutes to complete. I will make it clear that the participants clearly understand that their participation is strictly voluntary and that if they decide to participate they have the right not to answer any questions that they may find intrusive or too sensitive; and that they have the right to withdraw from the survey at any time without penalty.

Are there any incentives for participation?

There are no monetary incentives but participants can derive direct benefits from the study in terms of increasing their understanding of the circumstances that influence their family member's sleep patterns; but most importantly it will increase their awareness that sleep issues in ASD are treatable and should not be dismissed as an inevitable consequence of Autism.

Provide evidence of ethical approval, and measures taken to comply with data protection and confidentiality laws:

I will try to adhere to the:

ethical practice as laid down in Birmingham University's Code of Practice on research;
ethical guidelines as laid out on the British Educational Research Association (BERA, 2011) website i.e. complying with the spirit of the United Nations Convention Article 3 (which requires that in all actions concerning vulnerable adults, the best interests of the individual must be paramount) and Article12 (which requires that individuals have the right to express their views if they are able to, or helped to give informed consent, in all matters that affect them);
Data Protection Act 1998 in managing the data collected and then in disseminating research findings.

All data will be saved in electronic format and be password protected. The data is to be collected using Survey Monkey which is behind a firewall and encrypted.

All data collected will be kept until the research has been marked and passed, then it will be erased. Data exported from Survey Monkey will be stored in electronic format in a password protected file held on a laptop which is also password protected.

Details of how and where the results will be disseminated:

It is my intention to provide a summary of my research findings for publication on your website or media pages thereby giving parents who took part in the survey feedback on their contribution, as well as raising awareness and understanding of sleep issues among other parent carers and professionals. It is hoped that the research findings will encourage parents become proactive in securing help for a problem they previously thought untreatable and dismissed as part of autism.

I may share my findings with the Hansel Trust whose primary remit at the moment is to promote sleep as an issue. I may also submit a summary of my findings to MENCAP; the National Autistic Society; the Challenging Behaviour Foundation; Contact a Family; and the Handsel Project, all of which work to promote the wellbeing of the families who care for challenging children and adults.

Feedback to participants if requested:

I will be happy to give feedback to participants once my research has been marked and passed which will hopefully be next summer 2015.