“I am not normal”, “I am broken” are phrases we have constantly heard from Tom since puberty.
Popular amongst his peers, but not liking himself, feeling he has to be someone he is not, not being comfortable with having more than one friend, feeling people disliked him, anger problems, lack of confidence and self-loathing, bullied by older peers for being different.
Tom achieved good grades at school despite missing a lot through illness with the help of some very good teachers and the hindrance of the not so good. He got a place at university but was unable to finish as completion of assignments to his standards was impossible due to perfectionism and obsession. Fear of the future and getting overwhelmed led to complete isolation.
Over the years we have been seen by numerous specialists, psychologists, and psychiatrists.
Countess medications and numerous CBT sessions didn’t get us anywhere, with the exception at the age of 24, being accepted for 20 weeks therapy with an excellent therapist at an anxiety and trauma centre in England. Tom was able to relate and made some progress, however when the sessions came to an end, he saw it as a rejection against him and he spiralled out of control, with eating and food becoming a very worrying obsession. Weight loss accelerated at an alarming rate. Another fight for help began and the process slow.
Finally, we came under the umbrella of the community care team and after assessment, Tom was deemed too ill for any therapy and the EDU was prioritised. The speed of deterioration culminated in his collapse and we nearly lost him.
This resulted in his admission to an inpatient eating disorder unit. Whilst on the unit he was assessed for Autism and he scored high as being on the spectrum.
Tom was relieved at finally having an answer.
For us:-
Acceptance came with the help of a support group set up by Madeline from the PEACE Pathway to help carers with Anorexia and autism during the Coronavirus lockdown. We have met some wonderful people and listening to their stories and their experience we can see the similarities with Tom and the struggles their loved ones have and are still going through. This was our lifeline and the start of a new journey.
You might find these interesting too!
The short website guide video is now available. he video offers a clear, step-by-step overview of how to navigate the PEACE website and explains how its design supports accessibility for different users.
In the first episode of Co-Produced, Adia and Lauren are joined by Dimitri Chubinidze to explore how inpatient eating disorder treatment is lived, felt, and made meaningful through the senses. Drawing on a year-long sensory ethnography of an adult inpatient ward, the conversation reflects on neurodivergent-affirming, co-produced research that centres lived experience. The featured study, shortlisted for the NIHR Maudsley BRC Culture, Equality, Diversity and Inclusion (CEDI) Impact Award, highlights how listening attentively to bodies, senses, and experience can help shape more humane and inclusive care.
This blog by Lauren Makin shares insights from recent research on how eating disorder support can better meet the needs of Autistic and ADHD adults. It highlights the importance of recognising neurodivergence and adapting care to sensory, communication, and routine needs, based on what people with lived experience say is most helpful.
