The autistic spectrum is not, as is commonly understood, a line of severity but a cluster of impairments. Should the health issues that autistic people are prone to be considered alongside of, or as part of the spectrum? If so, why hasn't this been spotted before now?
“The whole of society has a role to play in enabling autistic people to live healthy, independent lives and participate fully in their local communities” - Matt Hancock MP [5 April 2019]
Do we really understand what autistic people need to ensure their health and well-being?
During the recent Autism Awareness month, there was much talk of the need for better awareness and support for mental health but very little discussion of physical health and how that might relate to wellbeing and capacity.
We now need to seriously consider whether some of the impairments and limitations we are used to accepting as part of autism have underlying causes that can be addressed.
Autism very rarely occurs by itself, and like me, many autistic people have found that while we are severely impeded by stress, trauma and lack of support, our biggest and least visible problems are linked to underlying health issues, autoimmune and autonomic disorders, and other ‘hidden’ disabilities.
There is a particularly strong link between autism and Ehlers Danlos syndrome/ hypermobility, and it's hugely encouraging to see people like Baroness Blackwood not only speaking out about rare disorders, but taking action put services in place, but when considering autistic health we must consider those who can't speak out for themselves, or even identify that they might have a rare disorder in the first place.
Epilepsy, less obvious seizures and severe allergies are particularly problematic as they can be mistaken for behavioural issues, tantrums or ‘acting out, or even worse, ignored completely, the consequences of which are a raised risk of injury for and sadly, fatality.
It is nearly 10 years since the passing of the Autism Act, yet as we can see by recent news coverage, neglect and abuse continue, care standards are still not properly enforced and autistic people still experience considerable denial of social care and health needs.
It’s also 6 years since the Bristol University CIPOLD report highlighted the higher mortality rate of people with learning difficulties, and the report identified the following factors; “Key issues that appeared to be problematic were the lack of coordination of care across and between the different disease pathways and service providers, and the episodic nature of care provision. ...Record-keeping was commonly deficient – particularly in relation to fluid intake, nutrition, weight and seizures, and little attention was given to predicting potential problems, e.g. when a person was fearful of contact with medical professionals”.
Beyond these failures in due care and attention, and the practical sensory and communication difficulties that autistic people are experiencing, it is becoming increasingly apparent that autistic people are constantly faced with medical models that don't apply to people like them, because they are based primarily on mental health needs, and use symptom frameworks that miss out the relevant conditions and specific comorbidities.
Recently there have been important discussions and much controversy, not only about how autistic people define themselves or how they are represented by people who write about them, but most importantly whether the model of neurodiversity and acceptance of impairments is empowering, or could prevent people from receiving medical treatment another care that they might miss.
Simon Baron Cohen has recently spoken out about the need to go beyond this argument and to look at autism through the lens of a medical model, which is hugely encouraging and yet it hasn't really been clarified what this means for individual autistic people, and those that care for them, or the challenges that this approach might bring.
Healthcare is setup to deliver most benefit to most people and it's just not set up for those who have hard to diagnose issues, difficulties with understanding or miscommunication, and are not able to self-advocate or have difficulty identifying their own health issues in the first place.
Quite often, the people looking after us are completely unaware that we might have unmet health needs or might need help with understanding our bodies (interoception) or emotions (alexithymia) and what we might need to look out for to manage our health effectively.
Many autistic people experience poor proprioception and have difficulty identifying the sources of pain too, and it is easy for problems to build up without our realising, and so we are disproportionately reliant on the systems around us.
Having unmet health needs is distressing and debilitating for anyone, but the impact of this on autistic people is disproportionate, firstly because our health needs are so poorly understood but secondly because the impact of not being heard and understood is that much more severe, and this trauma often leads to our having to abandoning healthcare completely, because we have lost trust. Attempting to manage things ourselves is less damaging than reaching for professional help.
It is still very poorly recognised that people who are able to communicate in most regards and who are currently described as ‘high functioning’ may also need help with accessing and using healthcare effectively.
From the anecdotal evidence that I have gathered, they are also more likely to be misdiagnosed as having psychiatric problems rather than physical health issues. If this is true of people who can communicate, how much more is it true of people who can’t and rely on others to recognise and express their needs.
The National Autistic Society have prepared comprehensive guidelines and practical advice for people with autism accessing Healthcare and other organisations and patient groups are making great progress in this area and this recent government consultation on autism awareness training for health and social care staff is encouraging, yet here is still so much more to be done to avoid exclusion and discrimination.
I welcome the announcement of n new measures to improve care for people with autism and learning disabilities However this assumes that people are in residential care or mental health units and that their learning difficulties and differences have already been identified. Furthermore, if people don't yet have a diagnosis, how can they know where to ask for help, which symptom tracking app to use, or even what symptoms they should report?
Why are patterns of comorbidity a specific concern?
In the UK, an estimated 70,000 people suffer with poor health and low quality of life due to
undiagnosed or untreated autoimmune issues, autonomic disorders and hidden disabilities.
Over 2.5 million of us experience problems with comorbidities.
As a systems designer and an autistic expert patient, I have read widely, am highly observant by nature, and the way that my brain builds cognitive models, means that I am well placed to spot patterns and to recognise linked issues that might generally be missed.
If I was a doctor, there might also be cultural, legal or professional barriers in the way of my being able to make and outline such links. As I am not, I am free to raise the following observations.
Recent research by Autistica has indicated that 1 in 5 anorexic women are autistic. Many autistic people have difficulty with certain foods and are diagnosed with psychological food refusal. Yet how often is gut dysfunction and IBS considered as a factor? Autistic people are also widely described as being 'fussy eaters' and criticised for having poor quality diets but is this due to individual choice or due to difficulty with digesting better quality and less processed food?
‘Mood disorders’ are common in autism, yet it is rarely considered that these might be caused by underdiagnosed health issues such as polycystic ovary syndrome or endometriosis in women and irritable bowel syndrome in men. It's way too easy for these kinds of symptoms to be framed as psychological, dismissed as just due to stress or attributed to poor lifestyle choices.
Not only does this detract from any medical investigation, but it also places an unfair and damaging burden on the autistic individual. While stress is indeed a factor, the guilt and shame of not being able to meet social or cultural expectations around food intake, behaviour and socialisation and other aspects of day-to-day living can also be crippling.
That doesn't mean that these are all in the head, nearly there is a feedback loop that urgently needs to be unpicked so that people can access appropriate medical care and social support.
The WHO have just identified burnout as a serious medical condition, and as autistic people appear to be more vulnerable to this than the general population, it’s about time we worked out why.
The claim that vaccines cause autism is both ridiculous and damaging , however what if vaccine ingredients such as adjuvants or preservatives are the trigger for the onset of obvious autistic symptoms? This would raise two questions, firstly that the process of vaccination may raise a disproportionate risk for autistic people because of a combination of factors, from the trauma of the injection through to proposed physiological differences which mean that they are unable to break down heavy metals and other vaccine components safely.
Secondly, could it be that because of this difference in metabolism, many other medications are not effective or safe for autistic people? Could side effects remain hidden and unreported because of the masking effects of autism and difficulties in communication?
Speaking of communication, when autistic people are non-verbal is this really by choice? The description of ‘selective mutism’ assumes so, but what if, rather than choosing not to speak, difficulty in assembling coherent phrases is involuntary, caused by neurological issues and poor executive function? Anecdotal evidence is emerging that people who nonverbal are able to communicate much more than expected using assistive tools and other support, not so mute after all.
In summary I am suggesting we not only research autistic comorbidities, and give autistic people and the people that look after them the information that they need to manage their health, but also review a lot of what is currently considered to be autistic behaviour in the light of them.
We should not be deterred by controversy, and complexity. We need to significantly change how autistic children and adults who are unable to meet social norms are treated, and decrease the stress and health impacts that are reducing their agency and capacity.
If we can't see the data, we can't see the problem
Increasing attention is being paid to the mental health and wellbeing needs of autistic people, sadly health needs are not only unrecognised but they are also largely unrecorded. Our current healthcare is built around silos, and isn't really set up to manage complex issues. I can be incredibly difficult for people, not only to get diagnosed but to have follow on coordinated care and to have their experiences and healthcare journey recorded properly.
Not only are health and social care services failing to recognise and understand complex health issues, new digital services and apps aren’t fully taking these conditions into account either.
These services also unknowingly exclude those with poor body awareness, and exhaustion, low self-esteem, and language or associated communication difficulties. Many people can't use apps, not because they lack motivation but because they struggle with the capacity, attention and situational awareness to be able to use them, and others have difficulties using screens at all.
Autistic people are being left behind three times over: their health and care needs remain unrecognised, poor knowledge of their health issues means but these needs remain unaddressed, and these unmet needs remain ‘invisible’ as their data is not gathered.
As health data is being increasingly used to make decisions about services, missing data matters.
In the absence of large-scale formal research into autistic health, it is even more important that the informal anecdotal data and narratives provided by autistic people are taken more seriously.
We need to remove as many barriers as possible to developing services that people really need, and in a way that not only includes autistic people but involves them.
Without knowing the healthy model for autism, how can we know what is broken? The more we are able to recognise and meet the health and social care needs of autistic people the more we are able to see what autism actually is, to separate out the impairments from the functions, and to improve services for everyone.
The horrific abuse carried out by parents who mistakenly treat their autistic children with bleach in an attempt to ‘cure’ their autism, is not just an outrage but it's also a clear indicator of how little autism is understood and how frustrating and demoralizing it is for those people who want to help, but do not know how to genuinely help or find the right help.
At the same time as we rightly outlaw and shun those practices, we should not be too quick to dismiss the benefits of nutritional support and supplementation, where deficiencies have been found, or the reports of meltdowns and impairments becoming less severe after sugar and some carbohydrates are removed from autistic people's diets. Not every nutritionist is a crack or a fraudster by any means, and the reputation of dedicated and well trained people has been very badly tarnished, and unfairly too.
My own ‘autistic’ health recovery would not have happened without supplementation changes in diet, and though not complete, has been so successful that with support I can now research and write at this level, and though I still very much fit the common diagnostic criteria, I struggle a lot less.
Let us not discount the brilliance that many of us have and are reaching with the right treatment, support and care. If we do not highlight the achievements and define the positive aspects of autism, then we also fail to define the impairments that autism can bring, and we undermine many of the positives of autism and autistic identity such as legitimising support and removing stigma and shame.
Recognising capacity and overcoming past stereotypes is hugely important in engaging autistic people in managing their own health. It is increasingly apparent that using the same word for the ‘neurodiverse’ condition and for the various states of disability and impairment is confusing and often clouds the issues we are discussing.
Let's also look at what might serve autistic people best, and not just the language, but also the frameworks of consent, and the assumptions that are made about agency and self-determination. Right now, we can all make an important step change: clear communication; Be more precise when we are talking about autism: are we speaking of the people, the impairments, the co-morbidities, the talents or one of the many cultural models?
I almost always use ‘autistic person’ but not everyone likes this, due to some of the negative connotations that remain. Should we as autistic people be so happy to identify ourselves so closely with a descriptor that also inherently includes and legitimises the inability or lack of support that many sadly experience?
Yes, but we should also call for change, for better understanding and better definitions.
Should we find new ways to define and describe the impairments for all of us, and especially those who might be less able to articulate their own needs so that the impairments are better understood, and not seen as investable?
Yes, and we, as autistic people, are in many ways leading the development of a new culture, where the whole of human experience is taken to account, and the boundaries between medicine, psychology and culture redrawn, or removed completely.
Lucy Wills is a designer, researcher and sustainability pioneer.
She is the founder of Globefox Health, a design-led healthcare project established to uncover new ways for all of us to identify track and report our health and well-being issues whether we have a diagnosis or not.
Lucy believes everyone has the right to participate in their own health and contribute to citizen research, and to have their experiences and data brought into future services, medical research, AI and machine learning.
Healthcare is better when everyone is invited.