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Planning Meeting June 4th 2025 (Meeting Summary) 

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Planning Meeting June 4th 2025 (Meeting Summary) 

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Planning Meeting June 4th 2025 (Meeting Summary) https://docs.zoom.us/doc/OQeDia2xSoOelyesqZw0HQ?from=web_summary

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Autistic burnout is an incredibly difficult experience where your brain is in overdrive and you always feel stressed

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🌱 Finding Your People: Join Our Parent Carer Group

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🌱 Finding Your People: Join Our Parent Carer Group

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As part of our wider PINS work, we’re setting up a Parent Carer Group to give families a space to connect, share ideas, and support one another beyond the engagement events.

This links directly with the “Finding Your People” section of the Parenting Capacity webinar, and it feels like a natural next step for those who attend.

The group is definitely happening — we just haven’t firmed up the details yet (format, frequency, etc.). If you’ve got thoughts on how we shape it, or ideas for making it feel welcoming and sustainable, pop them here 👇

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This personal wellbeing plan can be completed while reading our wellbeing guide. It will help you document and action some changes that you think are likely to benefit you.

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Looking after your own wellbeing as a parent/carer of a child with a brain condition - Cerebra

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Looking after your own wellbeing is one of the most important things you can do for the wellbeing of the whole family. You are the most important person in your child’s life, championing their wellbeing needs every day. For this to be sustainable, it’s really important that you find ways…

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Autistic Burnout Recovery: How to Build a Recovery Plan - Neurodivergent Insights

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Getting your energy back is possible. In this article, you’ll learn about autistic burnout recovery and how to build a recovery plan.

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Dr Dora Raymaker, Research Assistant Professor at Portland State University, discusses research exploring autistic people's experiences of autistic burnout. This includes what autistic burnout feels like, why it might happen and what can be done to prevent it.
Autistic people often talk about autistic burnout as a source of distress, but it's just starting to be recognised in wider conversations. Academic Autism Spectrum Partnership in Research and Education (AASPIRE) conducted a qualitative study to better understand and define autistic burnout (Raymaker et al. 2020). The study involved interviews with autistic adults and analysis of public internet sources.

Definition of autistic burnout

From what we learned we created the following definition of autistic burnout.

Autistic burnout is a syndrome conceptualised as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterised by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.

Characteristics and impact

The research participants describe the experience of autistic burnout as chronic exhaustion, loss of skills, and reduced tolerance to stimulus. They described it as affecting every part of their lives and lasting for long periods of time. Many first experienced autistic burnout during puberty, graduation from secondary education, or at other times of transition and changes in developmental expectations.

Autistic burnout had many negative effects on their lives. Many highlighted difficulties with their health, especially their mental health. They talked about struggling with independent living, loss of self-belief, and being frightened that the loss of skills from the autistic burnout might be permanent. They also talked about a lack of empathy from neurotypical people, who had difficulty understanding or relating to the autistic person's experiences. Some people related an increase in suicidal ideation and suicidal behaviour.

Reasons why autistic burnout might occur

People described a collection of life stressors.

Masking their autistic traits, for example by suppressing autistic behaviours, pretending to be non-autistic, or working very hard to act in a non-autistic way.

Difficult or unreachable expectations from family, school, work, or society in general.

Stress from living in a world not set up to accommodate autistic people, for example managing the stress of having to be in noisy environments.

Life-changes and transitions that are stressful for anyone, for example transitioning from school to work, experiencing a mental health crisis, or the death of someone close.

They also described barriers to getting support or relief from the stress.

Gaslighting or dismissal when attempting to describe the autistic burnout, for example being told that everyone has these experiences, that they just need to try harder, or that they are making it up.

Poor boundaries or self-advocacy with respect to saying no, taking a break, or asking for help. This may be due to trauma, fear, lack of assistance in learning how, and a history of negative responses from others when they tried.

Inability to take a break from stress that is so pervasive ("How do you take a break from life?").

Insufficient external resources and supports, for example inadequate disability services, lack of useful social support.

Together, the life stressors contributed to a cumulative load of stress and the barriers to support meant they were unable to get relief from the stress. At some point, the expectations on the person far exceeded anything they were able to do. Every part of them gave up and autistic burnout resulted. Or, as one study participant summarised:

''Autistic burnout is a state of physical and mental fatigue, heightened stress, and diminished capacity to manage life skills, sensory input, and/or social interactions, which comes from years of being severely overtaxed by the strain of trying to live up to demands that are out of sync with our needs.''

Reducing or Preventing Autistic Burnout

Participants told us about ways that they found to relieve or prevent their autistic burnout, and advice they have for others.

Acceptance and support - interacting with others who could accept them for who they were, without any need to masking or pretend. This could be one-on-one with family members or friends; on a community level of groups with accepting cultures; or on a peer level, especially finding other autistic people who could validate their experiences and offer information and emotional/social support from lived experience.

Being autistic - attending to autistic needs like stimming and spending time with intense interests and comfort items, unmasking, using autistic strengths or doing things in an autistic way.

Formal supports - receiving reasonable adjustments at school or work, physical support like someone to provide groceries, and mental health support.

Reduced load - taking time off, more breaks, reducing social activity or other types of more stressful activities.

Self-advocacy and health - learning how to set healthy boundaries and expectations from others, and what to do when others aren't respecting boundaries. Learning how to ask for help in a way others might be responsive to, and leading as healthy a lifestyle as possible (for example participants described how exercising, sleeping, eating well, and doing things that made them happy helped them out of autistic burnout once they had enough energy to do them).

Self-knowledge - learning how to recognise and act on the early signs of autistic burnout (for example by cancelling social plans to have more rest), having an autism diagnosis, and understanding one's own patterns of behaviour and feelings.

Recommendations and next steps

We recommend increasing awareness about autistic burnout, and connecting with the autistic community and peers that understand autistic burnout. The experiences of people who describe being in a state of autistic burnout should be validated, whether they use the term or not. We recommend that therapists and clinicians learn to recognise autistic burnout in clients and offer strategies for relief.

In general, we recommend others be aware of the potential dangers of teaching autistic people to mask or suppress their autistic traits. Suicide prevention programs may want to consider the potential role of burnout. We strongly support interventions to decrease the discrimination and stigma associated with autism and disability in society, and to improve access to reasonable adjustments and acceptance.

Though an important start to the conversation, our findings are from a small qualitative study of a non-random sample. They are also limited to autism; we feel that this may be a broader experience of people who experience disability. Therefore we highly recommend more research in this new and urgent area, especially in collaboration with autistic people who can contribute the expertise of their lived experience.

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Dr Dora Raymaker discusses research into autistic burnout

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Understanding Spoon Theory | What is the Spoon Theory?

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Understanding Spoon Theory | What is the Spoon Theory?

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The Autistic Burnout construct (Online Screening Tool)

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The Autistic Burnout construct (Online Screening Tool)

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Dr. Natalie Engelbrecht ND RP, Eva SIlvertant & Kendall Jones

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The Autistic Burnout construct | Embrace Autism

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The Autistic Burnout construct (ABO) ​​is a self-report questionnaire that measures traits such as fatigue, exhaustion, and related symptoms to identify autistic burnout in autistic adults.

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Copenhagen Burnout Inventory (Screening Tool)

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Copenhagen Burnout Inventory (Screening Tool)

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Dr. Natalie Engelbrecht ND RP & Eva Silvertant & Kendall Jones

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Copenhagen Burnout Inventory | Embrace Autism

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The Copenhagen Burnout Inventory (CBI) is a burnout measure consisting of 3 subscales: personal burnout, work-related burnout, and client-related burnout.

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The Autistic Burnout Workbook (Print Version)

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The Autistic Burnout Workbook (Print Version)

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Navigate the challenging terrain of autistic burnout with expert guidance, insightful visuals, and transformative exercises designed to help you pursue your own recovery from neurodivergent psychologist Dr. Megan Neff. is here to help.

Feeling burnt out? You're not alone. Autistic burnout is a challenge faced by many individuals on the autistic spectrum. And The Autistic Burnout Workbook

This transformative guide is designed to empower individuals on the autism spectrum to manage and overcome burnout. Crafted with empathy and insight, this workbook provides practical strategies and exercises to help you navigate the unique challenges associated with burnout.

Through interactive prompts and activities, The Autistic Burnout Workbook teaches individuals how to identify triggers, manage sensory overload, and build resilience. It encourages self-reflection and cultivates a supportive environment for personal growth. This user-friendly workbook is a proactive approach to mental health, promoting self-care and fostering a sense of control that makes it a lifeline for those grappling with the realities of autistic burnout.

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The Autistic Burnout Workbook: Your Guide to Your Personal Recovery Plan (Self-Care for Autistic People)

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Feeling burnt out? You're not alone. Autistic burnout is a challenge faced by many individuals on the autistic spectrum. And is here to help. This transformative guide is designed to empower individuals on the autism spectrum to manage and overcome burnout. Crafted with empathy and insigh...

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Webinar Outline:

1. Understanding Burnout

What is autistic/ADHD burnout?

Early signs and how it differs from general stress

Alexithymia: not recognising internal warning signs before reaching burnout. Learning to identify alternative warning signs, ie are our sensory sensitivities heightened? Are we struggling to communicate?

2. Rebuilding Capacity

Spoon theory and energy budgeting

Letting go of “doing it all”

Permission to rest

3. Creating a Calmer Environment

Reducing sensory overwhelm

Visual supports and gentle routines

Setting boundaries with others

D. Self-Compassion for Neurodivergent Parents

Unlearning shame

Difference ≠ Deficit in parenting

Affirmations that stick

E. Finding Your People

Signposting to local and online support

Peer connection and safe spaces

What to Expect:

Calm pacing and gentle pauses

Optional participation (no pressure to speak or use camera)

A mix of visual prompts, real-life reflections, and interactive elements

Takeaway possible resources, including a one-page tip sheet

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Dr. Megan Anna Neff (Author), Anna Caputo (Narrator), Simon & Schuster Audio (Publisher) & 0 more

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Autistic Burnout Recovery: Your Guide to Your Personal Recovery Plan

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Autistic Burnout Recovery: Your Guide to Your Personal Recovery Plan (Audio Download): Dr. Megan Anna Neff, Anna Caputo, Simon & Schuster Audio: Amazon.co.uk: Books

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Meeting Summary for Webinar Planning & Parent Carer Group Chat 20/05/25

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Meeting Summary for Webinar Planning & Parent Carer Group Chat 20/05/25

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Overview

Main purpose

Plan and organise a webinar focused on neurodivergent parent carer capacity and wellbeing.

Create a safe space for parent carers to share experiences and strategies

Develop both a live interactive session and a recorded resource

Webinar Planning

- Title confirmed: "Strategies to protect our parenting capacity, sharing tips and ideas from lived experience"

Format: 1-hour interactive webinar (45 min content + 15 min Q&A)

Two versions planned: live unrecorded session (June 27) and recorded resource version (July 4)

Time slot: 12:00-1:00 PM

Interactive elements: Mentimeter polls, chat box engagement

Registration: Will use Eventbrite for participant management

Content Structure

Main topics identified: autistic burnout, rebuilding capacity, creating calmer environments, self-compassion, finding support

Panel discussion format with lived experiences

Interactive elements and audience participation are planned

Focus on practical strategies and real-life examples

Other topics

Privacy and data protection considerations for participants

Technical setup requirements for webinar delivery

Marketing and promotion strategies

Registration process and platform selection

Action items

Pippa

Send the outline structure via email to the team

Set up Eventbrite registration

Create and send calendar invites for all planned meetings

Contact Lynn regarding webinar platform options

Misrah

Create presentation slides and Mentimeter content (by June 2)

Manage technical aspects during the webinar

Handle chat monitoring during the live session

All Team Members

Meet for structure review and question development (June 4, 2:30 PM)

Final run-through meeting (June 25, 2:30 PM)

Deliver live webinar (June 27, 12:00-1:00 PM)

Record resource version (July 4, 12:00-1:00 PM)

Read the full AI summary here

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Webinar Planning & Parent Carer Group Chat - 2025-05-20T20-41-40.908Z

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I wanted to share my thoughts on revising the title to include neurodiversity in some way and/or do you think we need to?

It will already be known to CPCF and schools that this is regarding ND. But to ensure when shared with other agencies and elsewhere, if i did not know about PINS or was in fact a newbie to ND itself, I might not necessarily join the webinar by current title. I just wanted us all to reflect and ensure it will reach out to all that will benefit. As I think maybe the title doesn't fully suggest that its for the non-neurotypical

Purposed Titles:

Strategies to Protect Our Parenting Capacity- Sharing Tips and Ideas from Neurodiverse Lived Experience

Protecting Your Parenting Capacity: Strategies, Practical Tips and Ideas from Neurodiverse Lived Experience

Strategies to Protect Our Parenting Capacity - Sharing Neurodiverse Family Reflections, Tips and Practical Ideas from Lived Experience

I`m not suggesting we change it fully but only to include, Neurodiversity/Neurodivergent/Neurodiverse some how