Gatekeepers, hurdles and ignorance on the path to diagnosis
Despite increased awareness of autism in women, there are still too many cases of women being unable to access or denied assessment. Whilst the average waiting list time for adults from referral to diagnosis in the UK is around two years, many women are not even getting on the waiting lists as their access is scuppered by gatekeepers, hurdles and ignorance.
The NICE Guidance for Autism in adults provides a set of principles to identify who should be referred for assessment and best practice guidance for the assessment and diagnostic process. Very simply, if an adult might be autistic they should be referred for assessment. Local health authorities are supposed to provide clear diagnostic pathways to carry out assessments, staffed by trained, competent professionals. Unfortunately, the postcode lottery of the NHS means that whilst some areas have fantastic services, others are fragmented, inaccessible or non-existent.
When I first started seriously considering assessment for myself I looked into my local provision and researched the experiences of others in my area. I quickly concluded that the cumbersome set-up here would require me to get past a series of gatekeepers and I did not feel strong enough to do that. At the point where I most needed diagnosis I was least able to advocate for myself.
For me, these gatekeepers would have started with my GP and progressed through the filtering layers of local mental health services. I would have had to ‘state my case’ repeatedly to a series of people with the power to let me through to the next level, until eventually, if I was lucky, I would reach the autism specialists. The prevailing ‘deficit model of autism’ would have meant me needing to repeatedly explain my failings and inadequacies to new people. Over and over I would need to elaborate on my deficiencies as a human. I just couldn’t face it.
The fundamental problem with this model is that the gatekeepers are not autism specialists, they often having minimal training and little experience of autism. If they are relying on the prevailing stereotypes of autism, and I have met many professionals who do, they are unlikely to see the autism in a superficially capable autistic woman.
Like me, many women who seek diagnosis as an adult have reached a point in their lives where demands have exceeded capacity. We are often fragile and vulnerable at the point where we ask for help. Many women, when told by a gatekeeping professional that they do not meet the criteria for assessment (bearing in mind that this criteria is often outdated and sometimes unfounded) give up. Often these women have far more knowledge and awareness of autism than the professionals tasked with gatekeeping.
Gatekeepers need to be be equipped with the knowledge, skills and tools to ensure that those in need of assessment get assessed.
Once past the gatekeepers the path to assessment may still be littered with hurdles. A common hurdle is when diagnostic services will not diagnose without the involvement of a family member who can provide information about childhood development. The reason given is that for a credible diagnosis there needs to be evidence of autism being present in early childhood. This particular hurdle is problematic in several ways.
Many adults seeking assessment do not want to tell their families of their suspicions. This might be because they don’t want to worry their families, or they feel that their family would be unsupportive, or because of difficult family relationships.
As we get older the pool of people who might be in a position to verify our early development gets smaller. Memories become faded and unreliable. Our loved ones might struggle to remember long ago details or may feel disloyal recounting detail of our struggles and problems.
Some adults lose contact with wider family members. Our social and communication difficulties might mean we struggle to maintain relationships with our families. We might have cut off, or been cut off by, family members who we find hard to maintain relationships with.
Autism is always a ‘best guess’ differential diagnosis, one made on a balance of probabilities. If evidence from adulthood, through self report, clinical presentation or scores from recognised diagnostic tools, is indicative of autism, it is my opinion that diagnosis should be given.
Lisa Sanders’ 2010 book ‘Diagnosis: Dispatches from the Frontlines of Medical Mysteries’ (London: Icon Books) describes the centrality of ‘patient story’, how 70-90% of medical diagnoses are made on patient account alone. If this is the case across medicine, it begs the question of why autism diagnosis is held to a different standard. How can a patient’s account be enough for most of medicine, but not for autism?
Autism diagnosis should not be withheld in the absence of family verification. Clinicians need to have faith in their patients, themselves and the tools they use.
Having spent a long time exploring and working myself up to request assessment, I became increasingly aware that many women were being denied access to assessments because they were considered too capable. It seems that for some gatekeepers, clinicians and assessment teams, being educated, having a job, a mortgage, being married or in a stable relationship and being a parent, means you can’t be autistic.
These clinicians seems to have missed the part in the DSM5 which states that ‘symptoms’ “…may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life”. I knew that, superficially, I was doing great. I have a home, a family, an array of academic and professional qualifications, and a job requiring adaptable and nuanced communication across a very broad range of clients and needs. How could I persuade the gatekeepers that I was, in fact, about to crumple?
I have written before about masking and performing normal. Masking can be an active choice but is often more subconscious, a product of our socialisation and experience. Some of our masks may start as choices but over time they become almost automated. Without thinking about it our subconscious applies the correct mask enabling us to adopt the roles we need to manage the spheres of our lives.
Dig a bit deeper beyond the surface and very often you’ll find a hoard of sophisticated coping strategies. We have no choice but to develop these coping strategies to help us lead our lives as best we can. Masking is often a big part of this. We often spend so much time on managing our coping strategies that we have no time left for ordinary life. This is where you find the hidden autism. And when you look deeper, it’s often not very hidden at all, you just weren’t looking properly.
Denying assessment to people who appear too successful to be autistic implies that autistic people cannot be successful. This is a very worrying assumption.
It is also wrong.
edit: I was lucky to be able to fund a private assessment through a charity. Many people are not in a position to do this. That is why I wrote this post.