Autism and Eating Disorder Consultancy, specialists in complex case management
Transforming lives with insightful solutions
Explore Innovative Ideas: Discover Insightful Perspectives Through Our Blog Content!
Happy New Year
Yes, I know it’s been over a week now and I’m only just wishing everyone a Happy New Year and getting down to writing this blog but what can I tell you, life’s not perfect. As it’s a new year perhaps some reflection is in order so here I go:
A year a go on New Years Eve as a family we had our traditional gathering including nibbles, games, a Chinese take-away and generally an altogether wholesome family environment. This gathering held such a level of significance for me, that I was completely unaware of it at the time. To understand I need to go back in time just a little further, in 2023 I was working as a Hospital Manager, something that I was proud to have achieved and family/friends equally as supportive of, as I reflect on it I’m saddened to say that I hated it. Now I appreciate that’s strong and let me be clear, I enjoyed the environment, I enjoyed the job (kind of), I enjoyed the learning and development it offered me (and that was a significantly steep learning curve I can promise you) but it put a clear stop to my ability to work with individuals.
Prior to this since late 2005 when I first took a job in the Care Sector I had always done direct work with autistic children (mainly) there were times it was Autistic adults but for all of my time working in the Care Sector I have worked directly with autistic people supporting them to understand the world around them and enabling the world around them to understand the individuals too. For the first time in my career I simply did not have the time to step away and complete any direct work, not to be too dramatic but it nearly broke me and in the September of 2023 I asked to step back to direct work with autistic people who had eating disorders, a request that was granted but not realised until I was replaced as Hospital Manager in April 2024. It took significant time for me to return to this role, and I found it increasingly difficult to step back from the fast pace of being a Hospital Manager, again I was struggling, and I didn’t know what to do and how to do it. I was an experienced nurse who had now worked from Healthcare Assistant all the way up to Hospital Manager and I was lost.
To understand what happened next, I need to take you to New Years Eve 2023 when in my fortune cookie from the Chinese take-away I had the following message “You will reach the highest point in your career or profession”. At the time I read it and laughed, I’d just stepped down from the highest point in my career, clearly this fortune was out of date! As we move to the summer, and I have just described I hit a significant low point, the paper with the quote on it still living in the back of my phone case providing me with a despondent smile every time I spotted it “how wrong that turned out to be”! Then it began, the momentum started to build, sick of seeing me miserable my long suffering but amazing other half said (words to the effect of) the following “James, it’s time you got out there and do what you do best, you know you hate being told what to do, why don’t you see about working for yourself”.
Versions of this comment had been floating around for over a year but this time it really hit hard, she was right, I love working with autistic people of all ages, helping them to understand the world around them, their place in it and themselves brings a sense of joy that is hard to find elsewhere. Following some work I’d done over the last 3 years I’d been getting sporadic emails asking if I could help people but I usually had to say no due to the full time job so I did my research, I spoke nicely to my employer who were amazing and my company was incorporated on the 2nd September 2024, on 1st October 2024 I began to work for myself but as a contractor to my employer, the same role that I was in so no break in service for the patients.
So why have I said all this today, now, well because it helps people to know who I am, it shows some of my latter journey that led to my business, website, this blog and so much more. It highlights that life isn’t perfect but that’s ok, it shows that things don’t go to plan sometimes, but that’s ok. It demonstrates that even in the darkness, light can be found and that sometimes, you must take the risk or you’ll bever know, so what about how I feel now about that fortune cookie, well, as of today I am:
- Autism Lead at a leading group of Eating Disorder Hospitals
- Clinical Lead for a Charity providing Expert by Experience Peer Support Workers
- Delivering training to a range of settings on Autism and Eating Disorders
- Working with a university to deliver clinical skills training
- Working 1:1 with individuals across the UK, in the USA, Canada and Australia
- Starting a research project with 3 others planned
- Have made links with other professionals in my area of expertise to develop materials to support individuals and their families
I’d say that fortune cookie was pretty accurate and that should clearly leave you with only one question – “But James, what did this year’s fortune cookie say?”
Well, I was greedy and ate two and these were the messages in the order I opened them:
“You will enjoy peace and harmony in life”
“Look for the dream that keeps coming back. It is your destiny”
So, watch this space – Happy New Year everyone
Explore Innovative Ideas: Discover Insightful Perspectives Through Our Blog Content!
What's in a Diagnosis?
I've worked around healthcare for almost 20 years and in my time there have been so many rules around diagnosis, some of my favourites are:
- If you have a diagnosis of Autism then you cannot have ADHD
- If you don't have a diagnosis of Autism then you can't access our service
- PDA is not recognised by the ICD-11 or DSM-V therefore it does not exist
The common issue with ALL of these statements and so many others that I have come across in my time is that they are judgements based on the diagnosis the person has, they do not consider the presentation of the person in front of the clinician. As many of you reading this will know, the top point I made here has changed significantly in the last 5 years and now it is common that dual assessments and diagnoses are made for Autism and ADHD. In many services I have recently supported there is a move towards treating people "as if they have autism" from the first point of suspicion and long before a diagnosis so as to avoid iatrogenic harm by ignoring the evidence building in front of the clinicians. These steps are so vital in supporting complex presentations as it allows some flexibility in an otherwise rigid treatment pathway.
That brings me to PDA - it is factually accurate that the Diagnostic Statistical Manual and the International Classification for Diseases do not recognise PDA or the demand avoidant profile, but that does not mean that it does not exist, in many ways the challenge is more about definition as it's presentation is so diverse with limited similarities between cases. However, if this were the case in truth I would not have been able to establish common ways of supporting individuals with the complex mix of Autism with the demand avoidant profile (PDA) and Eating Disorders.
In the years I have been doing this, I have learnt that those who have PDA are often misunderstood and this can lead to devastating consequences when trying to support them as so often this can be done incorrectly (even with the best intentions). So what is the point of this blog and what am I trying to say? It's become clear that in our desire to fit people into diagnostic boxes, we're unsure of what to do when an evident diagnosis is observed but not able to be assigned (due to it not being clearly assessable according to current literature) as such many professionals then draw a blank, declaring that "this isn't a real condition" or worse suggesting that parents who are in "full battle mode" are making the situation worse by not supporting the professional view.
I've been on both sides of this debate and in all honesty the same approach resolves the situation - stop trying to give a diagnosis and treat the symptoms in front of you. The formulation based approach to support and treatment looks to all affecting factors rather than what the diagnosis might be. In the case of PDA there is a commonality in "most" cases of extremely high anxiety, if there is adaptation made to account for high levels of anxiety then an understanding of the need to control situations (to reduce anxiety) is not borne out of the multitude of other factors I've previously seen it blamed on (Emerging Personality Disorders, Anorectic behaviour, Oppositional defiance - as examples).
If I could make a plea, just one take away from this blog it would be this - please look at the symptoms rather than try to find (or deny) a diagnosis - it will ultimately be much more beneficial to all involved.
Explore Innovative Ideas: Discover Insightful Perspectives Through Our Blog Content!
Autism, PDA and Eating Disorders
One of the most common things I'm asked is "So what is it that you do?" I completely understand this question, I'm new to this area and although I've worked in a well known Eating Disorder Specialist Hospital for the last 5 years, that's very different from working outside the hospital system and with families directly. When one family (after speaking with me) asked if I could write up what I had said to them so they could give it to the team treating their daughter I knew that the experience I had, was not universal amongst treating teams and I was in the minority with the knowledge I had. As such I felt the best thing I could do next was write my new blog around the core of what I do so here goes:
Autism is recognised as a neurodevelopmental difficulty predominantly affecting social communication, social imagination and social interaction. There are secondary difficulties with structure and routine and there can also be a complex interplay with sensory systems in the body. Pathological Demand Avoidance (PDA) is not officially recognised by the NHS as it is not contained within the DSM-V or ICD-11 which are the two main diagnostic manuals used by clinicians. It is however, recognised in private practice and acknowledged as a consistent explanation for a certain set of behaviours which are now more generally considered to be a sub-type of autism, often referred to as the demand avoidant profile. Anorexia Nervosa (AN) is an eating disorder categorised by difficulties with body image, resulting in a need to reduce calorie intake which subsequently results in significant loss of body weight. It is a complex condition where death can be a very real risk whilst the person continues to want to live – it is almost exclusive in this feature.
All three conditions are underpinned by anxiety which drives a need to control the situation and be in control of the path of recovery. In traditional AN treatment there is a controlled reversal of the weight loss and then therapeutic intervention around body image and family support. Often where the patient is autistic the AN does not start with a body image challenge but with anxiety and self-management of anxiety by missing meals. With this taken into consideration then standard AN treatment will be more likely to fail as the initial cause of the weight loss would not be addressed.
Individuals who have the demand avoidant profile of Autism and AN have high levels of anxiety, they almost exclusively live their lives in an adrenal response state which is characterised by 7 potential responses:
- Fight – Become aggressive when challenges
- Flight – Run away from the situation
- Freeze – Become unable to move (very common in PDA)
- Fawn – Do what others want to please them – “people pleaser”
- Fib – Tell fibs or lies but have no realisation of doing it or why they have done it
- Fool – Act the “class clown” as a way of integrating socially
- Flop – Collapse and be unable to function (think burnout – very common in PDA)
All approaches are required to be the least anxiety provoking as possible, at times medication is the best way to get anxiety support and higher doses of anti-depressant medication often have the desired effect. Further to this, Autism tends to increase rigidity of thought, AN reduces cognitive functioning as a side effect of the reduced body weight and this too can affect cognitive rigidity, this means that Autism and AN combined ensure a high level of cognitive rigidity. When the PDA is factored in then there is a very rigid thought process which is coupled with a need to control the environment to reduce anxiety – this can make any plan that does not fit with this set of thought patterns very difficult to enact. One key feature that I have experienced with autistic people who also have the demand avoidant profile has been the fact that the Mental Health Act was not applied, they remained informal throughout their inpatient treatment.
The only way to work with a demand avoidant autistic AN patient is the way they want to be worked with, they need to be an equal partner in the decision making around their plans. If the team promise something they should do as they promised to the letter. Language is important, in ED services we often talk about “being healthy” or working to be “healthy” but if this is not the patient’s goal then it will not help, previously patients have wanted to be “strong” or “well” if we can work out what the patient’s aim is then you can use their own goals in the language you choose to support them with. Regarding language, it’s common in Mental Health settings to praise patients for trying hard or making improvements – DON’T DO THIS! Most patients with AN do not like to be praised and given that eating is currently a demand and therefore something the patient does not wish to do, to say well done is to risk them not doing it again for the day (or longer).
These are some of the broadest approaches that have previously yielded success for the treatment of this complex set of co-morbidities, if this has been of interest to you then get in touch and let's discuss how these principles can be applied and worked with in your setting.
Explore Innovative Ideas: Discover Insightful Perspectives Through Our Blog Content!
It's nearly Hallowe'en, but what does that mean?
Autumn is one of my favourite times of year, if I'm honest I love it to be cold outside (I'm often found in shorts no matter the weather) but Autumn is when all that starts, the nights draw in and this weekend the clocks changed so that darkness becomes even more noticeable. Along with that the weather changes, more rain (though being based in the UK some would say it never stops raining), more wind and those beautiful colours in the trees. So why am I drawing your attention to all of this? Well as someone who has worked with autistic people for almost 20 years the changes in the seasons are just another change that needs to be accounted for and managed (ideally in advance). As seasons change the world reminds us of its beauty but as this particular season draws on then a couple of big events happen which can cause significant difficulty for autistic people.
Hallowe'en, for many the thought of "Trick or Treat" brings joy and happiness with sweets, chocolate, walking the streets with friends and family and a sense of community that's long passed in these times. For so many autistic children this brings significant challenges, a change of routine, the increased social nature of knocking on strangers door's, the constant stress and pressure of remaining calm, saying the right thing at the right time responding in the right way - all of this causes overwhelming stress in some autistic people.
I'm reminded of someone I know who loves to dress up in Hallowe'en costumes and enter into the spirit of the evening, until it comes to knocking on the door where their fear of rejection instils a level of fear into them that they are virtually unable to knock. After spending time building courage (or hoping that someone else they are out with will invariably knock) they are met with an adult at the door who offers up a range of sweets or chocolate. If chocolate was on offer then an easy response was on offer, take one and "thank you" however, there were a number of times where no chocolate was available and so over the years the responses changes as they developed their social skills. Originally the response was "no thank you I don't like sweets", a couple of years later my favourite response was "no thank you, but I like your carpet", a couple of years later the final response developed "thank you" as a singular sweet was taken - an agreement had been struck that once home a bargain could be had and the sweets swapped with other family members for chocolate or other preferred items.
As you can see from this example, any element of the evening can be challenging and the response to it can be equally as difficult to predict or manage, it's better to be prepared for this and manage the challenges before they appear. It sounds simple and obvious but knowing your child and how they will respond will be the most important aspect of how you manage the next few days. If they like to dress up then encourage it, there is of course some very difficult sensory sensations that costumes bring, so be aware of them and adjust for them, or don't wear them if they become too distressing. Some children will enjoy the scary costumes, others will genuinely fear them so be aware of the environments that we try to encourage our children to visit in the name of them "trying something new" so be aware of how far you push as sometimes it will only make a heightened situation worse and lead to a negative outcome.
Not all of Hallowe'en is bad, some autistic people love it, they embrace every element of it and really "go to town" with decorations, costumes and full engagement in all areas of the celebration, yet another reminder that "if you've met one person with autism, you've met one person with autism" (Dr Stephen Shore) as they are all uniquely different.
Explore Innovative Ideas: Discover Insightful Perspectives Through Our Blog Content!
Today is NOT World Mental Health Day (that was yesterday)
For the really astute amongst you, it will be clear that today is NOT World Mental Health Day, that was yesterday, I do however, have a reason for waiting until today for my post about such an important and inspiring idea. The recognition that mental health has been receiving over recent years never fails to inspire me and the support that has been garnered from all areas of society increases with every year. My issue with the day however, is that we still need a day designated to recognising World Mental Health, at a time when we are developing so swiftly with the support required and available, it is frustrating that there is still a need for a day dedicated to raising awareness of the need for mental health support each year.
I count this particular day alongside the "Autism Awareness Week" as an example of tokenism, in a society where there is great recognition that difficulties with mental health exist and that autism is real and affects over 60,000 people in the United Kingdom alone then why do we need a week to raise awareness? Why is this not being done in schools, workplaces, healthcare settings and government departments as standard practice? With an upcoming budget I fear the lack of acknowledgement and understanding of autism in governmental departments could lead to further cuts (real world cuts if not actual cuts) to funding which supports diagnostics, support provided by community teams and support offered to families.
As the NHS waiting list for autism diagnosis grows it's worth acknowledging a couple of vital statistics: As of the end of March 2024 there were 183,733 open referrals for an autism diagnosis. The government has set a 13 week target for the FIRST appointment to be had, there were 9,034 people who had successfully had their first appointment within the recommended 13-weeks. The system in its current iteration is failing tens of thousands of young people and their families. As someone who can assess for autism I know just how complex the process is, it takes time, patience and a lot of work. The decision must be made as a team not by a single clinician and there are quite strict criteria to meet, ultimately autism is a lifelong diagnosis so if anyone is to told they have autism then the team must be 100% sure it is.
For these reasons, it's clear to me that raising awareness is vital but to do so one day or week at a time simply does not feel adequate! In addition to my work I am a proud trustee for a charity which raises awareness of autism, campaigns for changes to the law to support autistic young people who are unfortunately in an in-patient setting and offers peer support work to in-patient settings around Emotional Dysregulation in Autism - to find out more check them out at emotiondysregautism.org - One day there will not be a need to raise awareness on a day by day basis as the world will recognise everyone as an individual with the positivity that approach brings.
James
JSH Insights
Transforming lives with insightful solutions
Explore Innovative Ideas: Discover Insightful Perspectives Through Our Blog Content!
The Journey of Endless Possibilities Begins Here
As I sit here in my new kitchen looking at the weather turning colder and more miserable I can't help but have a little joy in my soul, this is the first blog on this site and it will hopefully give everyone a little understanding of who I am, what led me to start this service and what support I can offer including the experience I have. So without further ado, a little about me:
I'm James, as I write this I'm nearing 40 and feeling suitably weary but in truth I'm excited for my future. I began working in healthcare in 2005 as a support worker in a residential school for children who have autism, these young people displayed behaviours which challenge, have significant communication difficulties and taught me the importance of listening to understand rather than listening to respond. I spent 5 years in this service before I felt that it was time to further my knowledge and experience by attending university at Sheffield Hallam University where I studied Applied Nursing (Learning Disability) and Social Work. Throughout my study time I also worked in supported living services getting to know young adults who had a range of learning disabilities and supporting them to live their lives with as little intervention as necessary - truly understanding independence and the role of supporting someone rather than "doing things for someone". By 2013 I was qualified as a Learning Disability Nurse and set about my "qualified" career with all the youthful exuberance you'd expect and none of the experience I needed.
Since qualifying I have worked in low and medium secure hospitals for adults with mental health difficulties and learning disabilities, I have spent time working with adolescents on a Psychiatric Intensive Care Unit (PICU), I worked within a locked rehabilitation unit for ladies with personality disorders and in Prison mental health teams. Each service expanding my knowledge and my experience until just over 5 years ago I began to work for an Eating Disorder service, over the last 5 years I have developed my skills and experience and found a passion for supporting individuals with autism, pathological demand avoidance (PDA) and eating disorders to recover. I work with a range of teams both in-patient settings and community settings and directly with the young people and their family to support their understanding of autism, and how it can affect the worldview of the individual. I am also qualified to complete the Autism Diagnostic Interview (ADI-r) and Autism Diagnostic Observation Schedule (ADOS-2) which allows me to independently assess for Autism - in the interest of clarity this can only be an indicative assessment and does not offer a diagnosis, for this my report would need to be reviewed and discussed with additional professionals - the local community team should be able to do this.
I live with my long suffering partner and 2 of our three children (I'm sure you'll read more about them as time moves on) there is neurodiversity running through our family with everyone in the house potentially being able to be diagnosed with some form of neurodiverse condition from OCD, ADHD, Autism, Dyslexia and Dyspraxia all finding their way into the house, as such my experiences in many situations are borne out of my personal life as much as my professional. It is this which truly ensures I understand how challenging it can be for families and allows me to work with compassion and sensitivity in the most challenging of situations. Out of interest we also have a cat living with us and a dog which has been liberated (stolen) by the grandparents.
After almost 20 years in healthcare and 5 years specialising I felt it was time to offer my support in a truly universal way by starting JSH Insights, offering my insights based on years of training and experience to support young people, their families and the professional teams working with them to ensure positive outcomes under challenging circumstances. Hopefully, over the coming weeks and months this blog will provide insight and information, support and guidance. Sometimes it will be more personal, others more insightful, if there is a topic you want me to cover then let me know and I'll happily try to write a blog based on request and if you think I can help then don't hesitate to get in touch.
James
JSH Insights
Transforming lives with insightful solutions
©Copyright. All rights reserved.
We need your consent to load the translations
We use a third-party service to translate the website content that may collect data about your activity. Please review the details in the privacy policy and accept the service to view the translations.