Research: Opportunities and Challenges Dr Laura Crane Associate - - PowerPoint PPT Presentation

Dr Laura Crane

Associate Professor and Deputy Director Centre for Research in Autism and Education (CRAE) L.Crane@ucl.ac.uk @lauramaycrane @CRAE_IOE

Participatory Autism Research: Opportunities and Challenges

Centre for Research in Autism and Education (CRAE) – Our Mission

• Conduct high quality scientific research that has a positive

impact on the lives of autistic children, young people and adults

• Meaningfully engage with the autistic and broader autism

communities to shape the future direction of autism research

Dramatic rise in autism publications

...but still a huge ‘translational gap’

A Future Made Together

• To describe the current landscape of UK autism

research

• To compare the nature of research with the

views and perspectives of the autism community

• To understand the nature and extent of

community involvement in research

A role for participatory research?

Research questions

• How do young autistic people interpret “normal” mental

health?

• Does a person’s “normal” change when they are experiencing

mental health problems; if so, how?

• What are young autistic people’s experiences of accessing

support for their mental health problems?

Participants - eligibility

• 16 to 25 years of age
• Have received a formal diagnosis of an autism

spectrum condition

• Be living in England

Participants and Methods

• Online survey (n=109)
• Semi-structured interviews (n = 21)
• Limited our sample to those with good spoken or written

language – unsurprising that many in our sample were diagnosed with Asperger syndrome, had gained educational qualifications, and were currently in employment/education

Survey – key findings

1)‘Normal’ is negative for young autistic people 2)High rates of mental health problems 3)Poor mental health literacy

1) ‘Normal’ is negative for young autistic people

Strikingly high rates of young autistic people reporting that they were feeling… Unhappy and depressed Worthless Under strain

Unable to overcome difficulties

Unable to face up to problems Lacking in confidence

2) High rates of mental health problems

3) Poor mental health literacy

How does “normal” mental health change when experiencing mental health problems? Unhappy and depressed Worthless Under strain

Unable to overcome difficulties

Unable to face up to problems Lacking in confidence

Know Your Normal Toolkit

Download for free at www.knowyournormal.co.uk

Interview results – four themes

1)(Not) understanding my “normal” 2)Stigma 3)Barriers to support 4)Trusting relationships

1) (Not) understanding my “normal”

• Many young autistic people were unsure

whether the difficulties they were experiencing were due to their autism or their mental health problems

2) Stigma

Mental health

Autism

3) Barriers to support

• Lack of available services
• Delays
• Not tailored to individual needs
• No other options available
• Disjointed services
• Poor transitions

4) Trusting relationships

“What I’d like is someone I can trust, someone to talk to, and someone who understands autism; a professional person”

Recommendations

• More initiatives to reduce

stigma of autism and mental health

• Increased training for

professionals

• Greater autistic involvement in

service design and delivery

‘Early career’ and ‘established’ researchers’ views on participatory autism research

Participatory research is…?

• Growth of participatory research
• It “makes me do better science”
• But what actually is it? What ‘counts’?

Need for support…

• Barriers and challenges
• Need (1) good mentoring, (2) development
• f more trusting relationships with autistic

co-researchers

• How do I start? (need for templates/exemplars)

Working in partnership

www.shapingautismresearch.co.uk

Coming soon…

The Research Passport

Thank you!

Dr Laura Crane

Senior Lecturer and Deputy Director Centre for Research in Autism and Education (CRAE) L.Crane@ucl.ac.uk @lauramaycrane @CRAE_IOE

Thank you for listening 