Trust is a painful thing

Building effective working relationships between autistic adults and support providers.

16 June 2020 – Research shows that many autistic adults do not feel understood or treated with respect by the professionals who are meant to support them, and that this can result in the person withdrawing from the service, foregoing essential support. While many providers are aware of this problem and want to improve their skills in this area, they are unable to find any educational materials or research to draw on.

Romy Hume

Romy Hume is a student at the Faculty of Education and Social Work, working towards the degree of PhD. She identifies as autistic.

She  wants to investigate the importance and role of relationships and relationship-building with support professionals in autistic adults’ lives, and then use their experiences and knowledge to take a first step towards providing professionals in the autism workforce with practical guidelines on strategies they can use to build effective, trusting working relationships with their autistic adult clients.

 

Project procedures

The study involves one interview up to 2 hours length, ideally to be recorded with a digital voice recorder, but consent to being recorded is not necessary for participation and even if participants agree to being recorded at the start, they can have the recorder turned off at any time.

Romy will do her utmost to make participants comfortable, including allowing them to choose the location and time of the meeting (with skype also being an option), and bring a friend, support person, support animal, or anything else that helps them feel relaxed. There will be no pressure to answer quickly, as the 2 hour timeframe allows for breaks and taking things slowly.

Data storage/retention/destruction

Participants’ data will be kept for the designated period of six years. After that, electronic files and digital media will be securely erased and hard copies will be shredded. Consent Forms will be stored by Romy’s supervisor in digital format on a password-protected University computer, and if received as hardcopy, they will be digitised and shredded immediately. All other data will be stored separately by Romy, either in digital format on a password-protected computer, or as hardcopy in her secure home office.

Participants may listen to, edit, and comment on the recording and transcript of their interview, and will be given the opportunity to change or add to their answers, until they feel that their viewpoints are accurately represented.

Romy aims to transcribe audio recordings herself, so nobody else will see this information. If she does need to use a professional transcription service, the transcriber will be University-approved and they will sign a confidentiality agreement.

Download a pdf of the poster below

Download the Participant Information Sheet

Right to withdraw from participation

Participation is entirely voluntary and participants have the right to withdraw themselves and their data from the research without giving a reason until the deadline for approving their transcript has passed.

Anonymity and Confidentiality

Anonymity cannot be guaranteed, as participants’ names will be known to Romy and her supervisor. However, they have the right to privacy and confidentiality. Their real name will never be used with their data. Instead, they may choose a pseudonym, which Romy will use in her own records to identify their data. She will use this pseudonym if she quotes anything specific participants said, but she will not share any details that will allow others to identify them. Consent Forms (the only place that links real names with pseudonyms) will be stored separately from all other data, and everything will be password protected.

What will happen after the study?

Romy will write up the findings of the research in her thesis: in academic language focused on themes and patterns that include quotes from individual participants, as well as in plain language as collective stories. She will send her final thesis and/or a summary of findings to participants if they wish, and the thesis will also be made available online for free. This is to allow anyone who is interested to read it without financial concerns. Findings may also contribute to research publications and presentations, including educational workshops and resources for the wider autism workforce.

What are the risks?

A potential risk of participating is that participants may become upset by recalling stressful experiences. If they do experience any emotional discomfort during or after the interviews, Romy can refer them to one of two counsellors (male or female) who specialise in working with autistic adults, and whom she personally knows as highly qualified, respectful, and trustworthy. She would also support them in filling out the relevant forms for accessing funding for counselling, and in making contact with the counsellor.

Contact details

Please feel free to contact the researcher or the supervisor if you have any questions or concerns:

Romy Hume (Researcher):                          

Missy Morton (Supervisor):                        

09 373 7999 ext 48775

John Morgan (Head of Department):      

09 373 7999 ext 46398

 

For any concerns regarding ethical issues you may contact the Chair, the University of Auckland Human Participants Ethics Committee, at the University of Auckland Research Office, Private Bag 92019, Auckland 1142. Telephone 09 373-7599 ext. 83711.
Email:

Approved by the University of Auckland Human Participants Ethics Committee on 25/10/2019 for three years. Reference number 023337.

Recommended

Need More Information?

We are autism specialists and can provide you with trusted information for free. Our research and information team are available to answer any questions you have about autism.

Ask us a question