Assessment denied

IMG_1711.PNG
[image shows the text ‘Assessment Denied’ on a brick wall]

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.

Gatekeepers

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.

Hurdles

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.

Ignorance

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.

24 thoughts on “Assessment denied

  1. This describes last year for me. After jumping thrugh variaitations of these hoops, saw a psychiatrist team and was being told that because I was “tracking well” I did not need a diagnosis or help….

    Liked by 1 person

  2. Other huge obstacles involved in involving parents in recalling your own early childhood are that your memory is actually far better than theirs, or their own memory is distorted by whatever reason for your difference was ascribed to it at the time. Parents aren’t immune from having personal stakes in believing or remembering things a certain way. Their testimony could wrongfully undermine someone’s case for a diagnosis.

    Or we learned early on that parents were not a reliable source of support. Our parents are just as likely to be condescending/patronizing/undermining if we tell them what’s going on, and putting up with that is not a reasonable hurdle to impose for someone getting a needed medical assessment.

    Is there any other condition for which clinicians regularly require the input of the parents of an adult patient for diagnosis?

    Liked by 1 person

  3. I fought to get assessed …. GP asked me: why did I want to? …. and …. what would I gain? However he finally agreed.

    I firmly told the assessor that there was no one they could question as my mother (aged 79) lived in France and my father was dead but I did have a very good memory of my childhood so how about she asked the questions anyway and we saw where it went. My earliest memory is from being a baby in a carry cot/moses basket in a car. My parents for years denied this memory and then finally worked out it was a car that they had for a short period of time before I was 1 year old!

    My diagnosis was confirmed in November (2016) but in reality I had known for years … from about the time my eldest was diagnosed in 2000. It would have been more of a shock if they had said I wasn’t.

    Liked by 1 person

  4. As a parent of a 17 year old who is currently awaiting a diagnosis, i absolutely agree that parents are not the best people to ask about evidence from early childhood. In my case, as my child never exhibited any obvious ‘autistic’ traits, was doing well at school, and had a reasonable circle of friends, I assumed all was well, until she had a complete breakdown in Year 9. Even then we were looking for reasons why my seemingly happy and talented daughter had succumbed to depression and anorexia, and only stumbled on Aspergers Syndrome as a possible answer quite by chance (certainly not from her CAMHs psychiatrist!). Now I am wracking my brains for examples of childhood behaviours to support an autism diagnosis and I have come up with very little, because she was, and still is, a complete individual, her own person, so everything she did was entirely normal for her. She, however, contends that she always felt different from her peers, but never knew how to tell anyone.

    Liked by 3 people

    1. Thank you for sharing that. It’s really interesting hearing you say that, as so often it’s said that parents know their children best but I’m just not sure we always do or even can!

      Good luck for her diagnosis, I hope it makes life better for her, it certainly has for me and my son.

      You might find it helpful to read auto-biographical accounts by autistic women as often we only see it (even in ourselves) when someone else points it out.

      Like

  5. Like Saki, this also describes the last year for me. In my case GP was very helpful and together we were shocked at local waiting time for NHS assessment. Also both shocked at cost of private assessment. I did opt for that though as felt intuitively it would be money well spent, which it was. I was asked to bring a relative, which I declined for same reasons outlined by autisticmotherland. Fortunately I felt strong and assertive enough at that time, and the assessor accepted that – but it came very close to being a stop barrier for me.

    Liked by 1 person

  6. Thank you for this! I just finished an evaluation in december (I’m waiting for the evaluator to get back to me with a diagnosis – he is taking his time though so I’m starting to think that he has forgotten about me). The road to getting evaluated to begin with was insanely difficult.. The people I met all kept coming with different excuses for why a diagnosis either wasn’t necessary or why I didn’t qualify to have one done either way. At this point I honestly feel exhausted and over it.. On many ways I’ve felt like I’ve known more about autism than the people that I have met on the way towards the evaluation.. That in turn have left me feeling doubt in myself and wondering if I really am right or if they are.. After all; they are professionals so they should know better than me, right? But they just seem so snowed in on that stereotype and if you don’t fit it, then you don’t belong there.. I remember the first time I brought it up and I took with me a bunch of papers that I have printed out from the internet and written comments on about things I could relate to, including a fair number of self-assessment tests from a huge variety of resources that all pointed towards the same thing. The person I met barely glanced at the papers and went on to tell me that my problem is that i’m depressed, nothing else.
    We’ll see if I finally get that official diagnosis from the evaluator or not.. At this point I have decided to settle for self-diagnosis instead either way..I’m too tired to fight for them to take me seriously at this point.

    Liked by 1 person

    1. Thank you for sharing your experience. Fingers crossed for you.

      I found the period before assessment very unsettling. I needed diagnosis for work adjustments and personally wasn’t happy with ‘self-diagnosis’, though I understand why so many people have no alternative. The relief and empowerment of knowing can be enough, especially if you don’t need supports.

      Liked by 1 person

  7. The hesitancy of medical professionals to believe females is unfortunately very common in many different areas.
    It also happens when a single mother tries to get their child diagnosed. (I was told outright that he definitely was Autistic but since he wasn’t in school, as I chose to homeschool the Dr. wouldn’t confirm the diagnosis in writing.)
    I was also told countless times by multiple relatives “There’s nothing wrong or different about him, he’s a perfect copy of you at that age.”
    I agree the idea that an adult from ones childhood present is ridiculous, as for many they were raised that being Autistic was something “wrong with” as opposed to simply “different operating system”.
    No matter how much I get my kids, no matter how often I’m told I was identical at age x to them it’s because of all the things you have listed are why I won’t go and actually see about an official diagnosis.

    Liked by 1 person

    1. Yes, women’s accounts are often seen as less valid. But there are good clinicians out there, who are aware and who don’t put up unnecessary hurdles, I was lucky to find one who made the whole process as straightforward as it probably could be.

      Liked by 1 person

  8. Thank you for this honest and insightful post. Such a difficult journey. I’m glad that good things are happening, but worry that it continues to be such a struggle for so many others.

    I’m a professor of psychology and also a registered psychologist in the US but I’m currently doing a research fellowship at Durham University. I work with many adults with autism concerns, and am very frustrated that the current diagnostic criteria do not capture what is most difficult about autism for many women. My team in US is now starting a project to interview and survey women about their life experiences, in order to better understand the strengths and the challenges, and revisit the diagnostic rules. If you are interested in learning about what we are doing please email me mikle.south@durham.ac.uk.

    Liked by 1 person

    1. I’m new to your blog, having read your response to the proposed television programme and their narrow world view of autism.

      Ive always suspected I have some form of autism – aspergers probably, but didn’t have a name for it when I was growing up. I just knew I was different, I didn’t fit in and I had to pretend to be someone I wasnt to be accepted.

      I doubt I’ll try to get a diagnosis, its not going to help me nor will it help my son. Ive heard horrible stories of children taken away from lone parents once diagnosed with autism. So very wrong but it happens!

      Also, I feel I knowyself pretty well, age 48. Ive lived my entire life like this. What could they tell me that ive not already worked out for myself?

      We know truly what’s in our minds, our hearts and how we think and feel. We dont need some “professional” to confirm it or block our diagnosis due to ignorance.

      Liked by 1 person

      1. Thank you for commenting. For me diagnosis was essential for confirmation, otherwise it was just a suspicion, which wasn’t enough for my evidence seeking self! I also needed formal recognition to get adjustments at work.

        Liked by 1 person

      2. That’s completely understandable. My ever enquiring mind can’t help but keep on researching but as I’m not working right now I guess it takes away that need. If I were like you, employed, I expect I’d feel the same – plus be in the position to be able to fund a private test. I know I have the potential to drive myself crazy if I think too much about it, so trying hard not to. Wish me luck haha

        Liked by 1 person

      3. Definitely good luck. I think I had reached a point where I was going to fall apart if I didn’t get diagnosed. As it turned out I ended up giving up work anyway! But at least it was my choice and not because of a breakdown.

        Like

  9. I don’t have an official diagnosis because it would make life difficult for someone in my career field due to stigma. I didn’t have a diagnosis as a child. I have 2 female relatives who weren’t allowed to get a diagnosis as their parents felt it would bog them down with a label (I don’t agree). Anyway, the three of us have still had to do what we needed to do to cope/function/whatever you want to call it. Even if none us knew why we had to do things a certain way, or be a certain way, we would still have to do it. My point is that although getting a diagnosis shouldn’t be hard as it is, there are ways forward without one.

    Liked by 1 person

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s