Thread by @aimee_speaks

Now attending the "Attitudes and Priorities for neurodiversity research" session.

It is standing room only (positive to see the interest!), as I am stood up it is trickier to live tweet, but I will try summarise after the session where I can.

#ITAKOM

The planning around evaluation questions to refine & reshape questions when capturing and better understanding attitudes towards ND people sounds v interesting.

I'm a big believer in involving ND people in research design to be able to make it as accessible as possible

#ITAKOM

They were statistically assessing the responses to the survey, reviewing the way the questions worked in relation to responses & collecting feedback on the experience of taking part to improve research practices.

Again, reflective & adaptive practices are positive to see #ITAKOM

Now hearing from Holly Jenning summarising research identifying community priorities for dyslexic people.

"It is important that neurodivergent people are involved in the research at all stages to make sure it meets community needs."

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Jenning is highlighting @liz_pellicano et al's research into the divide between the priorities of the Autistic community and what is being funded in research.

Jennings explains that this approach was applied to dyslexic needs in this research.

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Assessed dyslexia research between 1999 and 2022 on dyslexia, categorised the types if research projects and funders. Categories found include:
- diagnosis & characteristics
- biology & cognition
- causes
- support & intervention tjk s
- services
- societal issues

#ITAKOM

Methods of identifying community views on research funding/ priorities:

Small focus groups with 22 parents/carers of dyslexic children and 15 dyslexic adults.

Focus groups presented the funding & category data to discuss views on research priorities vs LE priorities

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Findings:

Clear that focus groups views of priorities do not reflect the funded research priorities. Priorities included:
- early diagnosis/characteristics
- education & occupational support
- improving understanding & attitudes
- improving mental health & self-esteem

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Conclusions:
- disparity between what is funded & priorities of community: research funds biology while priorities of community are for support & diagnosis
- next step to run a survey to capture more views then apply for funding to research one of these priority topics

#ITAKOM

Now Patrick Dwyer on research into the neurodiversity movement study.

501 responses to a survey (neurodivergent, families, researchers & professionals) to find out views on the neurodivergent movement, the social model of disability. Respondents asked to define these.

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Patrick summarises some of the qualitative definitions found in the responses about social model and neurodiversity movement.

Questions on intervention goals did divert between ND & NT respondents ehile most supported wider society goals.

#ITAKOM

It is interesting to hear about where there are overlaps on shared support, and where some are more sceptical/divided.

There is more aligned/in favour of more social-model approaches over changing the individual, which is reassuring to hear.

I would like to read more.

#ITAKOM

Majority agree that an intervention/supports for anxiety in neurodivergent people.

Of those who supported social model in early responses, clear focus on their response to changing the environment to lessen anxiety compared to those who had not heard of/heard of SMD.

#ITAKOM