Posted on: 21 May 2021

On Tuesday 18 May, an interactive stakeholder workshop was held focusing on the needs of autistic people in North West London (NWL). This was part of NWL Mental Health Partnership Programme’s (MHPP) efforts to improve patient care across the NWL footprint by bringing together providers, commissioners, people with lived experience and wider stakeholders to work towards supporting Mental Health, Learning Disability and Autism developments.

This particular workshop drew on stories and feedback from Autistic people. Over 100 participants tuned in to understand individual experiences and identify what the key ingredients of good care look like. 

Who were the speakers?

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An image from the Autistic Selves YouTube channel

The event was co-chaired by Autistic Selves who started the event by sharing a video of their own creation, outlining how they came to be diagnosed with Autism and Dissociative Identity Disorder (DID). 

The video can be viewed in full through this link. Autistic Selves have also produced a video called ‘Parenting, Autism and Dissociative Identity Disorder – can the three go together?’ (full link here). 

Joy Brooks recited her brilliant original poem – ‘Poem for Officials, Receptionists, Secretaries, Admin, Councils, All who cause stress (and get paid to do so)’. A link to Joy’s full poem can be found here. Another presenter, Alex, then spoke on issues ranging from the failures of communication between service providers and patients to the importance of redressing language and the context of our words. 

Reflecting on the presentations

Participants then worked together in breakout rooms to discuss ways in which services could provide better support for autistic patients. When the collective was asked to vote on three things that we could all do to make things easier and better for autistic people, the reoccurring words phrases were: better understanding; don’t assume; empathy; reasonable adjustments; listening and respect. See the image below for more responses. 

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Meera Mistry, NWL MH Partnership Programme Director, said: “The response to the workshop has been tremendous. The personal accounts we heard first hand were both powerful and humbling. It certainly opened my eyes to the challenges faced by Autistic people. There was a real sense of commitment and determination to take forward changes in our individual areas. It was empowering to be given the chance to co-chair and to have my voice heard” 

Next Steps

Participants agreed on immediate next steps to commit to:

  1. This will be ongoing. They will continue to listen to the experiences of Autistic people; develop collective knowledge and make changes in individual areas. MHPP will be in touch with participants (and those who couldn’t attend) to arrange the follow up workshop.
  2. Taking forward an approach to raising awareness through coordinated communication campaigns in service areas – ‘Think Autism’.  ‘Ask questions and don’t assume you know’ will remain a core principle. 
  3. Develop and take forward training led by those with lived experience.  

MHPP have a smaller group discussion planned directly with their Expert by Experience group in the next few weeks. They will review the outputs from the workshop, feedback and give updates on any other immediate actions which can be taken.  

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