A little bit autistic?

The UK’s Channel 4 is currently promoting its upcoming series ‘How autistic are you?’ [edit: link no longer works]. The blurb asks if you “think you might be autistic?” as a precursor to a whistle-stop tour of reasons you might indeed be autistic: 

“Struggle with social interaction, maintaining eye contact, or understanding the expressions and gestures of those around you? Do you have difficulty understanding other people’s feelings and managing your own? Or perhaps bright, loud or crowded places make you anxious?”


This isn’t helpful.

  • When free to create our own spaces for social interaction we form strong bonds and lasting relationships.
  • I have heard of too many children and adults refused assessment or diagnosis because they can do eye contact.
  • We are empathetic of others, we just might need them to communicate in a way we understand.
  • We often know exactly what to do to manage our own feelings, it’s just that external expectations often lead to us ignoring our own feelings, because ‘other people don’t feel like that’ so we must be wrong.
  • We can also be hyposensitive and crave loud, bright and busy (or have a perfectly well-calibrated sensory system).

Apparently the series intends to demystify autism. I’m really not so sure it’s going to do a very good job of it. The above paragraph ends with this gem:

“Theory and research suggest that autism is a spectrum, with autistic traits distributed along a spectrum in the general population. This means, to a certain extent, that everyone has some degree of autistic traits.”


This theory, that the population ranges from thoroughly-not-autistic-in-any-way-at-all along a straight line through to extremely-very-autistic-in-every-way-possible at the other end, is a fundamental part of Simon Baron-Cohen’s contribution to autism theory, which also includes how we lack empathy (err, nope) and how autism comes from an extreme male brain (err, nope, again).

The series will apparently “feature leading experts and people from the autistic community”. Experts and autistic people. Not autistic experts. Experts and autistic people. Nuff said.

Having preambled for longer than planned, I’m going to return to my title. Is everyone really a little bit autistic? I don’t think so. Does having an autistic trait or two mean you’re a little bit autistic? No, it just means you’re human. Autistic traits are human traits, for us they’re just in a different constellation.

  • If I tell you I wear reading glasses, would you say I was a little bit blind?
  • If I tell you I have a headache, would you say I was having a little bit of a migraine?
  • If I tell you I was a bit sad, would you say I was being a little bit clinically depressed?
  • If I tell you I sprained my ankle, would you say I was a little bit paralysed?
  • If I tell you I am unable to read a foreign text (whilst being perfectly capable of reading in my usual language), would you say I was a little bit illiterate?
  • If I said I didn’t like peas, would you say I had a little bit of an eating disorder?

I could go on. The point isn’t that being autistic is so awful that it’s worse than everything else, the point is that suggesting everyone is a little bit autistic trivialises and vanishes the experiences (good and bad) and the support needs of autistic people.

Assessment denied

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[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.

Autism and acceptance


These two words are often linked in ways that confer a variety of meanings, good and perhaps not so good. We are currently in Autism Awareness Month, also being promoted as Autism Acceptance Month. In this context acceptance is a positive goal. We need people to accept that autism is here and it’s not going away. We need people to accept autism as a variant of human life and not an aberration to be cured. We need people to accept that us autistic people are part of life and that every one of us has strengths and is of value. But, in the same way that awareness isn’t really enough, I’m not so sure acceptance is either. Like awareness, acceptance feels quite passive. “I’m aware” and “I accept” are lovely in principle, suggestive of kindness and understanding, but that’s it. We need more. There’s still a way to go.

This post developed from my growing irritation after reading a variety of forum and blog posts over the years by parents of autistic children. I’ve read parents describing how they struggle to accept their child’s autism or whether to even accept a diagnosis of autism.

“Should I accept an autism diagnosis for my child?”

This fear of diagnosis often comes from a fear of being ‘labelled’, the concept that labelling something results in a self-fulfilling prophecy, and by labelling a child autistic they will become autistic or more autistic. It is certainly not uncommon for those of us diagnosed later to appear to be more autistic following our diagnoses. However, this late regression tends to be a response to giving ourselves permission to be ourselves, releasing what we would normally suppress. It’s not that we become more autistic, more that we stop hiding our autism.

To me ‘accepting a diagnosis’ is an inexplicable quandary. I have yet to hear any parent discussing whether to accept a diagnosis of asthma, epilepsy or diabetes for their child. I can’t imagine a parent deliberating over accepting their child being diagnosed with Down’s Syndrome or Cerebral Palsy.

When parents question the validity of a diagnosis for a child who appears to meet the diagnostic criteria it makes me wonder. I wonder if perhaps their child’s additional needs are so insignificant that they don’t need a diagnosis anyway, but surely if that were true they wouldn’t meet the criteria. I wonder if perhaps they are worried about stigmatising and bullying, but autistic children (and adults) get stigmatised and bullied primarily for being different, not for being autistic (because we don’t actually wear labels in real life so most people don’t know we are autistic). I wonder mostly if perhaps people think diagnosis is optional because they don’t think autism is real.

I was joyous when my son got his diagnosis, and mine too. My response on both occasions was a sense of vindication, that I was right all along. Neither outcome was a surprise, and if a diagnosis hadn’t been forthcoming I would have sought second opinions. The identification and formal recognition of autism is immensely valuable both for self-identity and legal protection. Those of us being diagnosed later in life have a unique insight into life both undiagnosed and diagnosed. I think most of us prefer to be on this side.

“I can’t accept my child’s autism”

I’ve read and heard that some parents don’t feel they can accept their child’s autism once diagnosed. What does this even mean? I can’t understand how you fail to accept something that just is. It worries me when a parent fails to accept their child’s autism, because it can result in immense pressure on a child to perform normal. If you’ve read any of my previous posts you’ll have seen me discuss ‘performing normal’. There may be times when we feel we have to do it, but by and large it’s both exhausting and a great drain on our often limited resources. If we do it for too long or too often, or because we are forced to, we risk shutdown, meltdown and withdrawal. For too many autistic people, it results in deteriorating mental health.

I have come across points of view which equate accepting a child’s autism with not doing anything to promote development. This is quite preposterous. The parents I know who accept and enjoy their autistic children for who they are don’t sit back doing nothing. Like any parent of any child, autistic or not, disabled or not, we work bloody hard to encourage progress. But, what we don’t do is have ‘normal’ as our end goal. I think that’s the difference. For most of us ‘happy’ is our end goal.

Some autistic children might seek happiness among their typical peers, for them we shouldn’t strive to make them indistinguishable from their peers, we should find ways for them to engage with their peers as themselves, by building confidence and supporting interests, teaching them the skills to navigate their chosen social realm. Some autistic children are happiest pursuing solitary activities and special interests. We should support them too, giving the space and time to do what they enjoy, for they could be laying the foundation for their own futures. We need to work hard to find ways to ensure that the skills our children will need in later life aren’t neglected, but there’s no great rush. We have to stop working to chronological norms and accept that uneven, disordered development, the ‘spiky profile’, of autism is par for the course.

Accepting autism doesn’t mean doing nothing, it doesn’t mean treating an autistic child as some sort of anthropological curiosity who must be preserved in their natural state of autistic. Accepting means respecting and cherishing and nourishing. It means supporting and loving and enjoying. It means working to each other’s strengths to overcome and ameliorate the most challenging aspects of life. A bit like parenting any child really.

Hiding in plain sight

Getting a diagnosis as an adult woman

My route to diagnosis reflects that of many women like me. In seeking knowledge and understanding of our children’s needs we start to make links to our own lived experience. We come to realise that we are more like our children than we imagined. As we submerge ourselves in assessment and scrutiny, the professionals we encounter are seeking evidence of difference from the norm. It is not always easy to recognise and highlight your child’s foibles, challenges and developmental delays when they mirror your own.

This is the first of three posts which build on a talk I gave in early March at the National Autistic Society’s Professional Conference. I was asked to give a personal perspective on ‘support and diagnosis of autistic mothers of autistic children’. I had little time to prepare and this was my first time speaking in public. As part of my preparation, I co-opted a small group of autistic mothers who I chat with online to help me identify the priorities for my talk. There was no attempt at random sampling in the choosing of my sources, this was not an academic study or an attempt to present objective findings. I chose them because I like and identify with them and it was our voice I wanted to present. I cannot speak for all autistic mothers, but I can speak for some. I pitched my presentation at an audience of professionals associated with the support, assessment and diagnosis of autistic mothers and autistic children. What follows is both a summary and an elaboration of my talk.

If you’re autistic, you’re autistic

Autistic women and girls are both under-diagnosed and, often, harder to diagnose than men and boys. If girls and women are autistic at near or equal rates to men and boys it follows that there is a huge population of autistic girls and women without a diagnosis. Increasing numbers of women, like me, are being assessed following the diagnosis of our children. If we consider that most autisms have a hereditary origin, it is likely that professionals working with autistic children are encountering many undiagnosed autistic mothers. Yet, services and access to provision and support are generally not very autism-friendly. Professionals seem to operate from a premise that mothers are neurotypical. This is problematic and it is this assumption that underpins these blog posts. Autistic mothers do not become autistic if or when they receive a formal diagnosis. It is not enough to make ‘reasonable adjustments’ and accommodations only for diagnosed women.

Achieving self-awareness

A common factor among many late diagnosed women is how adept we become at maintaining a pretence of competency. Masking, social echolalia and the performance of social roles, become a way of life for us. We slip between social realms trying to fit, but often failing to ‘pass for normal’. We look around and see our friends, family and strangers appear to engage effortlessly in the social world, and wonder why we find it so complicated and exhausting. Some women feel obliged to try to keep up. Others, like me, shrink their world as a protective measure, able to limit exposure to the bare essentials. We develop sophisticated coping mechanisms as a way to protect the facade. We might seek solace in solitude, in our routines, special interests, obsessions and sensory comforts. It is often when these carefully constructed protective networks begin to unravel that we seek diagnosis.

Despite having always been a bit odd, and never fitting in on any meaningful level, I had never considered that there might be a reason for this. I just though I was a bit crap! It was as if I had missed the basic lessons in being human, like being expected to do algebra when you haven’t been taught how to count. I was expected to form and maintain social relationships and exist in a social world where I had flunked the first hurdle. Something was amiss. It was when I started researching autism and Asperger Syndrome as an explanation for my son’s difficulties that I began to find my answers.

Reaching ‘tipping point’

It took over five years following my son’s diagnosis for me to book an assessment. Throughout those years I juggled a number of stressful and often competing demands. I was working, albeit part-time, in the increasingly stretched and under-resourced public sector. I was studying for a postgraduate degree, upon which I had enrolled on an impulsive whim. I organised, supervised and carried out renovations on our home. Through it all I was parenting, supporting and advocating for a child showing increasingly problematic behaviours and who was close to school refusal. Whilst my understanding of myself was increasing, I was too busy, too focused on meeting my son’s needs, and having them met at school, to consider making time for me. I was also worried that if I started to talk about me, by removing the masks and the constructs, there was a risk I would crumble. It was too risky.

The space to think about me came after my son started secondary school. Suddenly, he was well supported. School were, and still are, pro-active, responsive and caring. They meet his needs without fuss or fanfare and he is thriving. I came to a halt on the renovations and completed my studies. I had time. I began to read more widely about autistic girls and women, I started chatting to similar women on an online forum. I started to identify strongly with other autistic women, but the thought of assessment was terrifying. When you have spent your lifetime believing you are faulty, never quite measuring up against the norm, the last thing you want is professional verification of that!

As seems to be fairly common among us late diagnosed women, I reached my personal ‘tipping point’ when I could no longer maintain the facade of normal. For me, major changes at work, which impacted on my need for familiarity, routine and stability, were that ‘tipping point’. Whilst on a personal level I could accept my differences and accommodate my difficulties, at work I was subject to organisational needs. Increased work stress heightened my anxiety and exacerbated my sensory responses. Lifelong sleeping problems worsened. For the first time I did not want to go to work and dreaded Monday mornings. I was exhausted all the time. I needed ‘reasonable adjustments’ to enable me to function at work. I had to do something. I needed a diagnosis.

The pursuit of assessment

Requesting assessment as an adult is a big deal and we do not request it lightly. If anything, by the time we request assessment we have usually researched to the nth degree in our typically obsessive way. We don’t request assessment until we have satisfied ourselves that we are credible. The fear of being labelled faulty or damaged, rather than autistic, and of our needs not being taken seriously, is very real.

We then have to decide which avenue to pursue to have our conclusions validated. I knew that I was not comfortable pursuing diagnosis through the NHS. My years of masking, coupled with an apparent high level of ‘functioning’, and an inability to ask for help, meant that persuading my GP to refer me was too anxiety provoking. If I even got past that hurdle, I would then face a succession of gatekeepers in the mental health team. I was not prepared to enter a process out of my control, and where I was not certain that the clinicians were adequately experienced or knowledgeable to recognise the nuance and subtlety of the female presentation of autism. I had heard stories of women being refused referral due to eye contact with the GP, or because they had no family members who could remember early childhood development. I needed an alternative, where I could maintain control and choice, and most of all, someone who I would feel comfortable with and who I could trust and respect.

I chose to be assessed through a small charity experienced in assessing and supporting people with Asperger Syndrome, who had been recommended to me online. Even better, I had seen my assessor on television and liked what I saw! I was able to book an appointment for a time which suited me, and was seeing someone who felt familiar, I had the reins. Knowing who I was seeing, what her qualifications and experience were, booking an appointment which suited me and having time to prepare made a big difference. Many women find this part of the process highly anxiety-provoking. When you have worked so hard to hold yourself together for so long, it is not easy to submit yourself to a process. We often worry that assessors are trying to trick us, to catch us out, as if we are performing autism, rather than performing normal.

Diagnosis

In the discussions I have had online, nearly every woman who has been assessed has received a diagnosis of an autism spectrum disorder. Clinicians carrying out assessments need to consider how they can make the process itself supportive of autistic women. Us autistic women were autistic before our diagnoses, our needs as autistic women don’t start when we get a diagnosis, those needs were pre-existing. The internet means we read about and share our experiences, and often it is the bad experiences of others that we remember and which feed our anxiety. I was lucky. My assessment was held in a well designed and carefully arranged ‘sensory room’, with blackout blinds, bubble tubes and calming lighting effects, there were squishy sofas, nice tissues for my inevitable tears, and cups of tea. I think I recall being offered a crumpet!

Assessment is hard, it means opening up and being true, something many of us have resisted throughout our lives. It can also be liberating. As I spoke, and was prompted, questioned and challenged, I started to feel understood. I cannot find the words to describe my sense of relief when my assessor declared that, in her professional opinion, I met the profile of a woman with Asperger Syndrome.

Postscript: following my initial assessment I ‘upgraded’ and received a full clinical diagnosis of Autism Spectrum Disorder. While the initial assessment was sufficient for self-awareness and to secure me support and adjustments at work, it never felt quite complete.