July 2024

So I’ve been sitting on this for a little while having applied, had an interview Wednesday and then been refreshing my emails every 30seconds for the last 48hrs!!!

But today I am both excited and properly overwhelmed and scared to announce that while the Tories are out… I am in!! (Ok maybe not quite running the country!)

I have been accepted by Sheffield Hallam to carry out PhD research into autistic burnout in autistic young people.

I am not naturally an academic style of writer and so getting this to standard will be a challenge but the PhD is a natural progression to continue raising the voices and experiences of autistic young people in order to inform better practice and support.

I will have the absolute privilege to be supervised and supported by Dr Luke Beardon (when he provides them with the 2nd reference requested)

Big public thank you to Dr Katie The Adolphus Practice for their reference.

September 2024

So now officially committed!! (To paying tuition fees anyway!!) Very apprehensive as to whether I can manage it but incredibly privileged to have Dr Beardon as my supervisor.
I am going to try and use this journey to continue to empower parents and inform professionals here on my page…. This may take different forms yet to be discovered but for now it will be in terms of sharing any exciting and helpful pieces of research I come across.

March 2025

I’m very close to being able to submit my ethics application… this has been a very long process so far!
One of the final stages is to proof read it… I massively struggle with going back over my own work, it literally feels painful!
So after some negotiation (payment in the form of a Taylor Swift CD!) my 13 year old is giving it a proof read for spelling mistakes!

July 2025

So getting the ethics submission completed has been a task and a half... actually just setting up the account of the platform and navigating it was overwhelming.

Then I lost it all, then it re-appeared, then I couldn't edit it after Dr Beardon had given me feedback.... at which point I had about several weeks where i just couldn't face it!

Anyway... its finally submitted and now I have a wait for feedback, changes I will need to make and hopefully eventually, ethics approval.

But this is not a time for rest as I now have to submit a 6000 word report to defend my research, do a review of the current literature, explain my method and assert that my research will contribute to knowledge and practice. I will then have to present this to a panel of people who will decide if I can continue to the actual research stage!

I swing between overwhelm, hyper focus, overwhelm, anxiety and more overwhelm. Thankfully I have a great study skills mentor who will support be with body doubling and helping me navigate the immensely confusing IT aspects!

Send spoons and chocolate!

December 2025

Today I received ethical approval for my research 🎉🎉🎉

Ethical approval is concerned with ensuring the safety of participants. In my research the emotional safety of the children and young people is paramount, but ethics is also concerned with confidentiality, anonymity, physical safety, and ensuring that the knowledge gained from research will be used for good, make a difference to the community and essentially won’t be doing research for research sake!

The ethics process takes hours and hours to fulfil, and quite rightly so, specifically for my research because these children and young people have already been exposed to so much that has not been conducive to their thriving, so I have no intention of adding to that! And equally my drive for this research is to better inform practice, support and recognition of autistic burnout and essentially make things better for our neurodivergent community.

So, one more hurdle to overcome with my progress report and presentation to a panel and then all should be good to start recruiting participants early next year!

April 2026

This week I have had the absolute privilege to meet with the first of my research participants…. And it’s been epic and emotional in the bucket loads.

Actually sitting and listening to young people talk about their experiences of burnout, really is a stark reminder of how important it is that this insight is out there, in the places where we can hopefully make a difference and create positive change.

For so so many of our children this research-based insight is coming far too late and the fact that children and young people are willing to give up their time and energies to participate is absolutely incredible. Massive thank you, you absolute legends xxx

Jodie

January 2026

I am now able to start recruiting for my research. (This opportunity is open to UK people only I’m afraid)

The most important thing is that any child who takes part is a) fully willing and able/has energy capacity and b)a trusted adult has capacity to support the child should they find any aspect of taking part tricky or triggering.

There is a right to withdraw from the research at any point up until a month after they submit their expressions.

The first stage is for parent/carers to enquire and receive the info/give consent and once that’s sorted, I can send the info for the child/young person.

To satisfy ethics, all enquiries and expressions of interest must come via my student email Jodie.clarke@student.shu.ac.uk
I also need to make it clear that participation is about contributing to my research only and ongoing support in my practitioner capacity is not part of this research.

Jodie xx

May 2026

I have now spent time with 5 incredible young people! All of whom I’m immensely grateful to.

I have a few more spaces available for anyone who is interested in being part of my research. Parent/carer consent is required to comply with ethics.

I so far have been unable to secure any primary aged participants, so particularly interested to hear from any parents of younger ones who feel there child would be able to contribute via conversation, artwork, poems, or any other form of creative expression they would like.

Many thanks
Jodie x

September 2026 Update;

I have now met with my 10 children and young people and I am starting to listen to and read everything that was said, discussed and shared……

And once again….. wow! Amazing! Insightful! Brave! Honest! Real! Heartbreaking! Powerful! And so much more. 😢

What I see emerging at the moment is overlapping with what he see in adult autistic burnout research…..

Presentation of reduced tolerance to sensory input, chronic exhaustion that isn’t eased with sleep, unable to manage socialisation or activities they love….

Equally many of the things that help show matches to adult research; extended rest, time with special interests, long periods of low to no demands….

But one of the differences from what we read in adult research, is how children and young people feel unable to rest due to pressures on themselves or their parents to “keep going”, “pushing through” and how this pressure even when they just can’t keep going means less rest or rest that isn’t actually restful but rather full of guilt and anxiety!

There has been general consensus that “pushing through” has only prolonged recovery and made things worse!

There is so much more to come from this research and these young people’s voices and this is only a smidgen of what is emerging so far.

October 2026;

The poster below will be presented at the November Bright Start conference in London, alongside my MA research on autistic masking in children and young people.