Personalised approach to diagnosis and care pathways

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1 Personalised approach to diagnosis and care pathways Dr Sue Smith Head of Lorna Wing Centre for Autism (Kent) Highly Specialist Speech and Language Therapist

2 Lorna Wing Centre (Kent) NAS specialist centre for Autism diagnosis for children and adults Ordinary house- family feel Mixture of NHS and private assessments Second opinion, forensic, complex cases

3 Diagnostic process at Lorna Wing All referrals reviewed by Head of Centre Lengthy process pre-assessment Most people attend for a day, some a half day Large pool of expert clinicians Usually given outcome on day

4 Key points What will be covered today? Historical and current practice in Autism diagnosis Impact of a co-occurring condition on the process Personalising the process Best hopes for diagnostic outcome

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6 Historical and current practice in diagnosis What has changed? Moving away from framing within mental health or learning disability- lack of clear identity Understanding potential for diagnosis of Autism alongside other conditions Missed groups - Women and girls, people with mental health issues or other neurodevelopmental conditions, people in criminal justice system, BME, learning disability

7 Historical and current practice in diagnosis What has changed? Autism understood as multidimensional Autistic people can have and want friends Autistic people can have a very good sense of humour Autistic people can care a great deal about other people Autistic people can make eye contact Autistic people can have vivid imaginations Autistic people can be extroverts

8 Historical and current practice in diagnosis Current Models NICE guidance- Updated in 2017 for children, updated 2016 for adults) Different models nationally- lack of consistency Impact of austerity/waiting list pressures- leaner models and sometimes less experienced or qualified assessors Overreliance on tools- Potential for one tool to be seen as always right

9 Impact of co-occurring condition on diagnostic process Examples of possible conditions Mental illness/trauma Learning disability Other neurodevelopmental conditions Learning difficulty Sensory issues Physical disability Forensic issues Catatonia Neurological conditions

10 Impact of co-occurring condition on diagnostic process Specific examples Mental Illness/Trauma Considerations- Is person well enough to cope with process- Is this short term or long-term? Is support available after process to deal with emotional rollercoaster than can occur? Is there a risk of retraumatising someone through history taking Could mental health issue mask or mimic Autism?

11 Impact of co-occurring condition on diagnostic process Specific examples Mental Illness/Trauma Adaptations- May cope better in non-clinic setting Close working with local services to ensure all parties aware of possible impact of diagnostic process and support in place Ensuring diagnostic team includes diagnosticians with strong Autism and mental health knowledge

12 Impact of co-occurring condition on diagnostic process Specific examples Learning Disability Adaptations Possible need to see in non-clinical setting Need to use pictures/signs/alternative communication Use of video to gain naturalistic data in a range of situations Importance of time spent explaining Autism and process to individual (consent) Having clinicians with skills and expertise in both learning disability and Autism

13 Personalising the process Considering how diagnosis can be done with rather than done to the individual Honesty- sharing thoughts, knowledge and observations throughout the process Validation- Clearly acknowledging and including the persons views and opinions. Sharing thoughts so that the individual can agree or disagree Preparation and explanation- No surprises! Explaining process and function of all aspects.

14 Personalising the process Adapting to the individuals needs Reducing anxiety- Contacting individual before the process and ensuring they know what to expect and that the team know what will make the assessment work for them on the day Preparation- Sending a clear description of the assessment day, pictures of staff and venue Adjustments Being ready to use signing, pictoral and informal approaches if this will work best

15 Personalising the process Respecting the individual Assume capacity- with young people (14-17) and all adults assume that person has the capacity to make decisions about the process and until this has been demonstrated not to be the case. Take time with pre-diagnostic counselling and feedback- These have the potential to be remembered and be pivotal Make sure an individual with capacity decides who will hear diagnosis and feedback

16 Best hopes for diagnostic outcome What should diagnostic services be considering? Are services designed using views of Autistic people? Do we prepare people for process and outcomes? Is the focus diagnosis or also strengths and needs? How individual/functional are recommendations? How therapeutic is the process?

17 Best hopes for diagnostic outcome Focus on post diagnostic care Linking best hopes to recommendations Providing direct links to local support Providing specific advice and tools that include considering cooccurring conditions e.g. advice to mental health, support plans Is the focus diagnosis or also strengths and needs?

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19 Thank you for listening I can be contacted on Sue.smith3@nas.org.uk