PDA & Parenting

A critical-insider perspective on PDA and parenting

This post is based on a presentation I gave at the PARC event ‘Critical Perspectives on Pathological Demand Avoidance’ on Tuesday 15 May 2018. This is very much a walkthrough of the presentation, using a combination of material from the slides, in text and image form, and supplementary narrative where needed.

Please note that this is a long post, but there is a lot to say! A summary will shortly be available on the PARC website.

Both me and my son believe we would meet the criteria for PDA, yet we do not identify as PDAers. I recognise us both in accounts by and about PDAers, in programmes like ‘Born Naughty’, or as described on social media by parents and PDAers themselves, but we would both describe ourselves as ‘just’ autistic. I hope to write about my own ‘demand avoidance’ in a future post. I will not be describing in any detail how my son is PDAish because that is his story to tell, but there are times when I cannot tell my story without reference to him, and he has consented to this. I understand why parents need to talk about their children, because I know how isolating our situations can be, and how we need to learn from each other to be the best parents we can be. I would just urge caution, use anonymous accounts, delete your posting histories, use pseudonyms wherever possible.

Why am I talking about PDA parenting?

I have spent around 10 years hanging out and sharing ideas and support in online forums, with a particular interest in children and young people who exhibit demand avoidant, aggressive and violent behaviours, and I have around 10 years’ experience using PDA strategies and techniques as a parent.

I have over 20 years’ experience supporting often vulnerable adults, including 18 years’ probation work with adults in the criminal justice system, many of whom were almost certainly undiagnosed autistics, including those with a PDA-type profile. Very few had formal diagnoses. As a result, I have considerable experience supporting a wide variety of people who exhibit what is often called ‘challenging behaviour’.

I also have a personal and academic interest in the discourse of ‘mother-blame’ and I have noticed how mothers of PDA-type children often experience considerable judgement and intrusion due to poor understanding of autism by professionals.

I recognise PDA as a ‘profile of autism’ (I will come back to ‘profiles’ later) and I am concerned that critique of PDA could harm PDAers and parents of PDAers, by supporting discourses centred on behavioural problems, bad parenting and mother-blame.

My aim for the presentation was to explore and ponder the tensions between my experience and observations, including the usefulness of PDA for me as a parent, and the clinical and academic construct of PDA. In essence, I am seeking to balance my pragmatic use of PDA as a signpost and shorthand for me as a parent, with my ideological and theoretical concerns about PDA for me as a fledgling academic.

Aut-o-biography

  • My son was diagnosed age 6 under ICD-10 with Asperger’s Syndrome.
  • I was diagnosed age 46 under DSM5 with Autism Spectrum Disorder, having received a ‘non-clinical diagnosis’ the year before to evidence my need for workplace adjustments.
  • I had suspected for both of us since he was 2, when, at his 2 year check the health visitor recommended I read Simon Baron-Cohen’s ‘The Essential Difference’ (lol).
  • He was initially referred for an SEN assessment at 3, for an Educational Psychologist assessment at 4 and then for autism assessment at 5, largely as a result of escalating behaviour that ‘looked like’ bad parenting.

We both have a similar ‘profile’:

  • Sensory problems
  • Masking/camouflaging
  • Anxiety
  • Demand avoidance…

My cognitive dissonance

PDA was not well known when my son was younger and Newson’s original PDA criteria included ‘passive early history’ and ’language delay’ which did not appear to ‘fit’ my son.

Despite my son exhibiting all other PDA characteristics, this stopped me describing him as having PDA, yet:

  • He presented with extreme demand avoidance and a PDA-type ‘behaviour profile’.
  • PDA techniques were highly effective.
  • My main support network was other parents of PDA-type children.

PDA is often confusingly described as both different to autism and as an ASD. As I consider autism and ASD to be synonymous, this does not make sense to me.

In 2016 Phil Christie (at the National Autistic Society’s Professionals Conference) said that the above 2 criteria (passive early history and language delay) were no longer considered essential criteria, and this got me thinking…

Can someone meet both a PDA and an AS profile of autism?

If I was to describe my son, or even myself using clinical, diagnostic terms, it might look something like this:

But, now look at the next 2 tables:

That is the same child (or the same adult) showing a perfect combination of 2 supposedly discrete autism profiles.

My experience and observations indicate that a more obviously- (stereotypically-) presenting Asperger-profile autistic child is likely to be diagnosed easier and quicker than a less obviously- (stereotypically-) presenting PDA-profile autistic child. My son was referred before his more PDA-profile type observable behaviours became more pronounced than his Asperger-profile type observable behaviours. This meant that identifying my son’s autism was fairly straightforward as he appeared to present with a textbook Asperger-profile of autism. We were lucky, and had we delayed, diagnosis might not have been so easy…

What is a typical path to a PDA diagnosis?

Sense of difference about the child:

  • Often an early suspicion of developmental delays but nothing significant.
  • Often skirting along fringes of typical development.

Escalating ‘behaviour problems’:

  • Which can look like ‘bad parenting’.
  • Which are often not consistent across home, school and other settings.

Usual parenting strategies don’t work:

  • Parents have often worked through a series of parenting guides and often attended parenting classes.
  • Parents might have got stuck in a vicious cycle of escalating ‘behaviour’ and sanctions/consequences.

Ask for help:

  • First line help often means more parenting classes and advice to strictly follow reward/punishment methods.
  • When the suggested strategies and approach does not work, parents are blamed for not being consistent, or not doing it properly.

Mother blame:

  • Parent blaming is almost always targeted at mums (for a range of often contradictory reasons see my previous blog post on the irony of parent-blaming).
  • Attachment theory is often used incorrectly to further lay blame on mums, often resulting in ‘family therapy’ (often run by underqualified and inexperienced staff using poorly evidenced and inappropriate techniques).

Autism assessment:

  • Along the way it seems not uncommon for the family to encounter a ‘renegade’ professional who sees something in the child that looks like autism even though nobody else can see it, and this results in a referral for assessment.
  • Initial autism assessment often indicates a failure to meet threshold and a conclusion of ‘autistic traits’ or ‘social and behavioural difficulties’ or non-specified ‘anxiety’.

Stumble on PDA:

  • By this stage parents (usually mums) have started researching and come across descriptions of PDA.
  • Parents (usually mums) voraciously read about PDA and start to engage with other PDA parents.

Find support in PDA community:

  • Parents (usually mums) find others like them and start to learn new, better, and considerably less stressful and anxiety-provoking ways to support their children.
  • Parents start to feel heard and validated, realising that they might have been right all along, and that they are probably not bad parents.

Find sympathetic clinician who can recognise ‘subtleties’:

  • Through recommendations, children are often taken for private assessments with clinical diagnostic providers who are known to be able to see beyond stereotypes and to see the often more subtle PDA presentation of autism.
  • This does mean parents are ‘diagnosis shopping’, it is inevitable that clinical expertise will vary and many clinicians across all disciplines have specialist areas of interest, for example, the highly reputable Lorna Wing Centre is often recommended for assessment of girls and women.

What are ‘PDA strategies/interventions?

PDA adjustments are built around reducing demands and reducing the stress and anxiety which results in ‘demand avoidance’, and includes things like:

  • Framing demands carefully
  • Using indirect demands
  • Explaining reasoning
  • Collaboration
  • Negotiation
  • Using humour and novelty
  • Supporting sensory needs
  • Choosing ‘battles’ carefully
  • Allowing initiative
  • Offering choices

But PDA-style parenting and support is about more than ‘behaviour management’…

What does good PDA-style parenting and support look like?

Reducing anxiety:

  • Ending the vicious cycle of increasing demands and increasing anxiety.

Adjusting expectations and environment:

  • Ensuring sensory and other needs are met.

Teach and model problem-solving skills:

  • Equipping and supporting children with thinking and communicating skills.

Focus on flexible and adaptable skills that will last a lifetime:

  • Reducing or removing time spent on learning transient skills.

Support autonomy and self-advocacy:

  • Encouraging children to be assertive and empowered.

It is my view that this set of aims should be the foundation for any autistic child, or indeed for all children.

How did PDA suddenly get so popular?

Online resources and forums:

  • Including specialist (PDA Contact Group and The PDA Resource) and non-specialist (Facebook groups, Netmums and Mumsnet).
  • Around 2010ish PDA became much more widely talked about and this had a snowball effect.

Backlash against dominant interventions:

  • Around 10 years ago the main interventions being discussed among parents of younger autistic/possibly autistic children were ABA, TEACHH (including via the NAS Early Bird training) and Bio-medical (eg Tinsley House and Sunderland Protocol).
  • Many parents of PDA-type children tried these, to varying degrees, and found them ineffective, and often found they made things worse, so parents started to look for other ways for their seemingly ‘non-compliant’ autistic/possibly autistic children.
  • Many parents, me included, resisted the normalisation and cure narratives which dominated much of the autism parenting world, and wanted to find ways to support our children with more flexibility.

Increased autism ‘awareness’:

  • The rise of compulsory autism training across the teaching, clinical and broader public sector contributed to many professionals thinking they understood autism.
  • This training was (and indeed often still is) based on the idea of autistic people as ‘other’ (such courses are rife with ‘they do this’ and ‘they do that’), and is almost always based on a medical, deficit model of autism, often, in my view, resulting in more rigid stereotypes and less flexible thinking about autism among those who attend…
  • Such training often provides a narrow, limited and limiting toolkit of strategies and interventions, and this can hinder the flexibility and creativity of approach needed by many PDA-type children (and other autistic children too).

But was PDA really a new profile?

Back to the 1940s

I was somewhat surprised when I finally read Uta Frith’s 1991 translation of Hans Asperger’s 1944 paper, and that 3 out of 4 of the case studies he presents in some detail, described behaviours that now might be seen as evidence of PDA-type autism.

These are the extracts I used in the presentation, and there is more in a similar vein, but I urge you to read the case studies for yourself and see what you think:

… the conduct disorders were particularly gross when demands were made on him … when one tried to give him something to do or to teach something … it required great skill to make him join some PE or work even for a short while … it was particularly in these situations that he would start jumping, hitting, climbing … or some stereotyped sing-song.” (Fritz V.)

“… he was repeating the second year because he had failed in all the subjects. The teachers believed that he ‘could if only he wanted to’ … he made surprisingly clever remarks of a maturity way beyond his age … he often refused to co-operate, sometimes using bad language … ‘this is far too stupid for me’ … little things drove him to senseless fury … extremely sensitive to teasing … an inveterate liar … told long fantastic stories* …” (Harro L.)

“… reported to have been a very difficult toddler … unable to cope with the ordinary demands of everyday life … he could be very naughty and would not do as he was told … it was impossible to go to a park with him, as he would instantly get embroiled in fighting … he liked to tell fantastic stories … he had a strong tendency to argue with everybody and to reprimand them … he made life hard for himself by his awkwardness and endless hesitations.” (Ernst K.)

Fast forward to the 1980s

In Lorna Wing’s 1981 paper she describes ‘Asperger’s Syndrome’ which was very much based on then contemporary understanding of autism and Asperger’s case studies, but she removed 2 interesting elements from Asperger’s analysis:

  • The possibility for imaginative play.
  • The ability to be original and creative.

In Uta Frith’s 1991 footnotes to Asperger’s paper she too seemed to struggle with some of Asperger’s observations:

  • Sceptical of ‘fantastic stories’ and imaginative thinking.
  • ‘… the claim that autistic children have a special gift for art appreciation is very surprising’.
  • ‘… little evidence that autistic children have the same sort of fantasy life as normally developing children’.

Elizabeth Newson, building on her 1970s/80s clinical work, and referred to in her 2003 paper, defined PDA as distinct from ‘classic autism’ and ‘Asperger Syndrome’ noting:

  • An equal sex ratio.
  • Demand avoidance using social manipulation as a key criteria.

What PDA did

  • PDA provided an easy shorthand to help us help our children.
  • Especially when the standard interventions did not work.
  • It gave us ‘permission’ to go off-piste with strategies and interventions.
  • It legitimised what we often already knew worked for our children.
  • It enabled the breaking of cycles of escalating behavioural interventions
  • Improving the lives of many children and families.
  • It helped us find peer support.
  • The nature of our children’s ‘behaviour’ can leave us extremely isolated.
  • It enabled autistic children who did not fit stereotypes to get an autism diagnosis.

Do we need a PDA profile of autism?

  • Autism profiles do not stand up to empirical testing.
  • Profiles can perpetuate stereotypes.
  • Profiles can be divisive.
  • Profiles can cause confusion.
  • But, profiles can also be useful:
    • To highlight under-represented groups eg girls and women.
    • To reach under-represented groups.
    • To challenge narrow views of autism.
    • They can support and affirm identity.

Why PDA matters to PDAers/PDA parents

Validation:

  • PDA recognition often follows years of failing to secure an autism diagnosis.

Identity:

  • PDAers report feeling different to other autistic people.

Representation:

  • PDA experience under-represented/marginalised in autism literature/resources.

Isolation:

  • PDAers/PDA parents can feel alienated from autism/autistic community.

Investment:

  • PDAers/PDA parents have an emotional (and financial?) investment in PDA.

So, what’s my problem with PDA then?

The name is awful:

  • Pathological can mean disease-state, extreme or compulsive/obsessive and, as well as the negative connotations and potential for stigma, I am just not sure how such a narrowly-defined term reflects the complexity and nuance of PDA-type autistic people.

It cannot be simultaneously an autism and a not-autism:

  • Over and over and over again I keep seeing PDA being presented as an autism spectrum disorder but ‘not like normal autism’ and I want to shout, ‘THERE IS NO SUCH THING AS NORMAL AUTISM’.
  • PDA is presented as distinct from ‘Classic Autism and Asperger’s Syndrome’ when we already have research that says these are not distinct conditions.
  • On a theoretical level the reliance on Newson’s ASD tryptic (CA – PDA – AS) presents a false dichotomy for PDA, ie that it is different to CA/AS, and we now know that the ASD sub-types are not stable categories.

Perpetuates stereotyped/outdated notion of non-PDA autism:

  • PDA literature often describes ‘normal autistics’ as having less empathy, being less creative, less imaginative and more rigid, more restrictive and more serious and literal than PDAers.
  • The problem is that our understanding of autism has moved on considerably since Newson first theorised PDA, and we now recognise how empathic, creative, imaginative and social autistics across the spectrum can be.

No empirical evidence that PDA ‘demand avoidance’ is different from autistic ‘demand avoidance’ or non-autistic ‘demand avoidance’:

  • Every single feature, trait, sign, symptom, whatever we call it, of autism, is present across the entire human population.
  • Autism ‘traits’ and PDA ‘traits’ are fundamentally human traits. Just as no feature of autism is unique to autistic people, I do not believe that demand avoidance is unique to PDAers.

PDA strategies/interventions are not only useful to PDAers:

  • It is often suggested that PDAers are a distinct group because ‘normal autism strategies and interventions’ don’t work, and again I want to shout, ‘BUT THEY DON’T WORK FOR MOST OTHER AUTISTIC PEOPLE EITHER’.
  • PDA strategies are not unique to PDA, they are built on therapeutic methods which are well established and have broad application. We need to move away from this exclusive and silo thinking.

Inadequate recognition of fluctuating ‘demand avoidance’:

  • I have heard some PDA supporters suggest that if a child (adult) is not demand avoidant all of the time it cannot be PDA.
  • I would suggest that if a child is so anxious that they are demand avoidant all of the time, something seriously needs to change as that child is not being properly supported to reduce their anxiety.

The acceptance of ‘demand avoidance’ (and therefore high levels of anxiety) as a permanent state:

  • Gillberg’s 2015 Faroe Islands study indicates that demand avoidance reduces as children mature.
  • Based on my experience I would suggest that as children develop better communication skills, more self-awareness and improved self-regulation, that they find alternative (more socially acceptable?) ways to express their non-compliance. It is not that the instinctive fear response to perceived and actual demands is fully removed, more that we become more able to self-advocate as we develop more skills.

Whataboutery

If PDA is a distinct profile because of the “extreme” nature of response to anxiety, what about other “extreme” anxiety responses?

  • Selective mutism
  • Eating disorders
  • Self-harm
  • Substance misuse

Would we want:

  • Pathological Selective Mutism Autism Spectrum Disorder?
  • Pathological Eating Disorder Autism Spectrum Disorder?
  • Pathological Self-harming Autism Spectrum Disorder?
  • Pathological Substance-misusing Autism Spectrum Disorder?

What about compliance?

  • Is “extreme” compliance perhaps more pathological and more harmful to autistic children and adults than “extreme” demand avoidance?

I would argue that compliance is one of the greatest risks to autistic children and adults. The ability to say, express or indicate discomfort, displeasure or distress, or even just not wanting to do something for any or no reason at all, is a vital skill.

Conclusion

The dismissal of some of Asperger’s observations perpetuated a narrow view of autism:

  • Excluding more PDAish, social and creative autistics.

Effect of egos and competition on diagnostic categorisation:

  • If Newson had been part of the in-crowd of autism researchers could the PDA-type characteristics of autism have been incorporated into the autism spectrum sooner?
  • Was Newson ahead of her time in recognising, like Asperger before her, that autistic people could be creative and imaginative and that not all autistics crave routine and sameness?

Impact of increased ‘awareness’, stereotypes and prescriptive interventions on non-compliant autistics:

  • It has been suggested that autistics did better before the rise of early interventions (see Michelle Dawson for example), perhaps when parents and teaching staff weren’t restrained by prescriptive autistic training models and packages (from intense ABA to social stories and emotional literacy teaching) and had to be child-focused, creative and experimental.

Dimensional nature of demand avoidance is akin to other ‘extreme’ anxiety responses:

  • Should we actually be talking about ‘extreme’ anxiety?
  • Is demand avoidance just one of many anxiety responses?

The PDA profile of autism, like other profiles and attempts to highlight under-represented groups (eg BAME/women and girls), has some use in the short-term to raise awareness and inform clinicians:

  • Asperger’s Syndrome served a purpose in increasing understanding of the breadth of the autism spectrum, and enabled previously unrecognized autistics to be recognised as autistic, but proved to be an unstable categorisation, resulting in it being absorbed in the broader autism/ASD category.
  • It is my hope that in time the PDA-profile and its criteria will be similarly absorbed and that we will develop better ways of describing the nuance of the different and varying (across people, time and culture) presentations of autism.

PDA techniques and interventions should be more widely used across the autism population to support autonomy and self-advocacy:

  • Done well, the PDA approach supports children to become excellent negotiators, collaborators and activists. That has to be a good thing!

I finished my presentation by asking how do we build bridges across the spectrum?

Guest post: The quest for equilibrium

image shows an out of focus woodland background, with a log and rope bridge in focus in the foreground, overlaid with ‘the quest for equilibrium’ in white text 

In this guest post, Katharine Manning writes about diagnosis, disclosure and managing the demands of everyday life, including her return to work.

It’s over 18 months now since I obtained my diagnosis. That has given me some peace – at last – and a basis for making informed choices about my life including how to rearrange it going forward. After spending several months free of work I finally seemed to get my autistic existence into some kind of balance, after quite a few years of feeling out of kilter but not understanding why. The question was though, would it withstand starting work again?

During my time off I’d found ways to head off or quell the autistic ‘overdrive’ that many others experience. But life was gentle, demands were few and time was plentiful. I got properly fit again by taking up running, one of the last things I thought I’d ever want to do but it helped lift me out of a quite unexpected but severe depression. I watched a lot of TV snooker: not everyone’s cup of tea but I find it good for my soul. It also reminds me of quiet, secure, companionable times spent in the company of my now-late grandparents. My marriage is in a better place, no-one in the family had any major health worries after a run of bad fortune and the ‘youths’ (too old now to be described as children) seem happy in their lives. I’d made quite a long sequence of disclosures about my diagnosis; in fact I got quite a good script going which overcame the difficulties of starting my explanation from scratch each time. Most of these went OK and even though a couple didn’t, I mostly managed not to let those bother me. The overall message and developing my altered identity were heading in the right direction.

Sometimes I find I’ve run out of steam for further disclosures, or just don’t make them. With two long-established friends in particular there was an opportunity but I didn’t take it. There was also a newer friendship where I just didn’t want to. It’s good sometimes just to try and ‘pass’ and let people make of me what they will. In fact I’ve recently made my first couple of new friends in many years so maybe have somehow relaxed into myself. One is (probably) autistic herself and there is a strange joy in finding someone from your own tribe. Oddly enough what has also helped is unlearning some of my self-sufficiency, by engaging more with other people through asking them for and offering help and things.

I had hoped that an extended spell free from work would bring about a fairly thorough ‘restoration’. To a limited extent it did but by no means amounting to ‘recovery’. It brought home to me that my functional deficits cut across all domains of my life. Being at home can be as challenging as being at work, just in different ways. About that time I read a post from the Autism Women’s Network about autistic burnout, which seemed to describe my situation perfectly. I felt it also explained why my AS had become more pronounced during the course of my life, which was puzzling me.

So, what conclusion to draw about what to do about work in future? I decided that the answer is to persist … but make it fit more manageably within my life overall. The idea of ‘managing spoons’ is very relevant to this, deciding how best to allocate my limited energy and personal resources. So I made a full and honest disclosure of what my AS means in a work context and entered into a problem-solving dialogue with my prospective line manager about the job I’d applied for and been offered (he received it well). I’ve halved my previous work hours and though the office is quite a long journey from home I’ve decided to try something new, staying away overnight which gives me quiet time and space to regroup mostly free of family pressures.

On days when I cope well, especially in the work sphere, I do still question whether I ‘merit’ this diagnosis. But then come days when I definitely don’t cope well and I’m reminded of – and eternally grateful for – the value of my diagnosis in understanding and managing my life. I recognise also that my ability to cope at work is a hard-earned consequence of doing just that: managing my life as well as others’ expectations.

I’m still not sure to what extent it might be possible for me to ‘recover’ my mental health which has become characterised by chronic anxiety mixed with some recurring depression. I find myself feeling unreasonably agitated when train carriages aren’t as quiet as libraries: not because I think other people shouldn’t talk but because my brain can’t hear conversations without processing them. ‘Brain fog’ or cognitive clouding is becoming a major issue and my ability to cope with that may ultimately determine whether it is realistic for me to continue in work longer term. Decisions about everyday life are also finely balanced: for instance, managing social anxiety by avoiding contact with people risks getting out of practice and further losing confidence. How much worse might AS get for me, particularly as I age? Might anxiety, irritability and isolation win the day or will a sense of humour, patience and self-forgiveness carry me over the further rough ground ahead?

What’s certain is the value of my support team. As well as family and friends, I’ve been lucky enough to have a very helpful GP who is always willing to listen, understand and research the issues I bring her. I’ve also felt well served by my workplace occupational health department and union representative. I’m fortunate that both my local NHS mental health services trust and autism service provider are progressive and in particular through the latter I found an extremely good-hearted specialist therapist who offers support to people with AS on both an individual and group basis. Finally, one of our local universities is doing some highly relevant research on managing anxiety symptoms in people with autism. By contributing to that I’ve been able to further scientific understanding as well as strengthening my own knowledge of the condition.

Review: ‘Are you autistic?’

[image shows a graphic representation of the autism spectrum as a complex network or constellation, with a central blue circle holding the text ‘Are you autistic? Review’]
Last year, the promotional material for a new TV show about autism, then titled ‘How autistic are you?’ resulted in me writing what has become my most viewed blog post, ‘A little bit autistic?’, where I challenged some of the myths encapsulated in the flyers being shared across social media. I was not alone in questioning the premise of the proposed programme, but all I did was rant a bit. Others were more proactive, and thanks to the input and hard work of a bunch of young autistic adults, and now titled ‘Are you autistic?’, the show aired last night.

It was so much better than I expected.

Georgia and Sam, presenting, totally outshone (and, in my opinion, should have usurped) Anna Richardson’s role as ‘neurotypical guide. The young people involved were fabulous in their honesty and humour. I loved the use of speed-dating to demonstrate how autistic women use social masking. What was particularly interesting for me was that I could see the masking but the neurotypical people, who were actually there, could not (highlighting the double empathy problem perhaps).

Georgia and Sam successfully challenged many myths about autism, including the dreadful ‘everyone is a little bit autistic’ and described and showed how the autistic spectrum is not a continuum, but is more like a complex constellation (see featured image above). Seeing Jo and JP get their diagnoses, and their happiness at knowing they’re autistic, was a wonderful contrast to the frequent portrayal of autism as a tragedy (see my last blog for more on diagnosis).

What wasn’t so good?

The robot freaked me out, and I didn’t like the scattered references to ‘living with autism’, and whilst it was great to see so many autistic women in one place (which is always a delight as I described here), some older autistics would have helped represent the lifespan. Apart from the inclusion of JP’s son the overall representation of autistic people was quite narrow, and I’d really rather the ‘cost’ of autism wasn’t compared to the ‘cost’ of cancer.

I was disappointed than none of the academics/clinicians involved were autistic, and would urge non-autistics involved in autism research and diagnosis to share their platforms and boost their autistic peers. I was somewhat amused at Simon Baron-Cohen’s surprise that so many autistic women might still not be diagnosed, and I suggest he gets out of his academic ivory tower a bit more and engages with the autistic population he’s built a career on.

But, overall, it was a bright, positive, occasionally challenging, introduction to what autism can be for some people. We need more representation and it was a start.

It doesn’t quite beat my favourite autism documentary so far, Rosie King’s wonderful ‘My autism and me’, but it comes close.

Bravo Georgia and Sam, and all the other autistic participants. You did good.

Diagnosis matters

[image shows a background of multiple layers of brightly coloured interconnecting cogs, with a large central bright pink circle displaying ‘diagnosis matters’ in white text]
Every now and then, in ‘real life’ and in the ‘virtual world’, I encounter people asking, ‘Why did you need a diagnosis?’ or ‘You’ve managed to get this far without a diagnosis, what’s the point now?’, and others confidently stating, ‘I know I’m autistic but there’s no point getting a diagnosis at my age’ or ‘I don’t need a doctor to tell me I’m autistic’. More and more adults are identifying as autistic without pursuing clinical diagnosis, often explaining that autism is not a medical/psychiatric condition, and that clinical diagnosis can be impossible to access and even detrimental for some people. I don’t dispute these claims at all, but I do not, on the whole, think that self-identification is the way forward. Autism does need to be de-pathologised, by not only focusing on deficits and difficulties, but skills and strengths too, and I am in agreement with those who argue for it to be removed from the psychiatric manuals, but we still need a means to identify autism and evidence our support needs.

My experience of diagnosis, both for myself (here and here for example) and my son, has been overwhelmingly positive, and I accept my subjective bias. However, the challenge to the existing clinical diagnostic model does raise important questions and quandaries, and this post is my attempt to explore some of these issues and tensions.

“I sometimes try to imagine an ideal world where all our diverse needs would be met and catered for, and we would not need our differences categorised and labelled. I hear autistic people’s requests for an ‘autism-friendly’ world and think how lovely that would be. Then I remind myself that our needs and supports are infinitely diverse, very often contradictory, and that even if we remove all the ‘labels’, those of us with minority neurotypes would still feel different. How would we understand ourselves and find each other without some concept of our shared neurotype? Without a ‘label’ for ‘my type of brain’ how would I find people like me? How would I understand why I feel the way I do? Would I still feel broken and wrong and alone?” (PS)

Thus, I start from a position of supporting the need for a shared concept of our minority neurotype. In the world that we inhabit today, the clinical label of autism both has meaning and is significantly better than the labels of weird, rude, unfriendly, aloof, inept and freak (and worse) that get applied to many autistic children and adults. Before my son’s diagnosis he was labelled ‘naughty’, ‘thuggish’ and ‘spoilt’, but diagnosis brought new understanding and a different way to interpret his behaviours. If, like me, you have a struggling child, who is academically able and verbally articulate, whilst presenting with what are described as very troublesome behaviours and a number of developmental delays, or, like me, you are seen as strange and awkward and fussy, you are faced with a barrage of judgement and assumptions. An autism diagnosis can liberate us from our own internalising of these judgements and, if we are lucky (and it really should not depend on luck), provide others with a greater understanding of our strengths, differences and support needs.

As part of preparing this blog post, I asked a group of online friends, including women with NHS and private diagnoses, women who have been referred for diagnosis and women not yet sure how to proceed, about their own experiences and thoughts about diagnosis. They will be referred to by initials, either their own or ones they have chosen for this piece, and have been offered full control over the inclusion of their contributions. This is not an academic piece, more a personal commentary enriched by the contributions provided by this wonderful group of friends. None of us can speak for all autistic people, but hopefully what follows will provide some insight and help answer some of the questions sometimes asked.

Why is diagnosis important?

Autism is more than a feeling.

I’m not sure it’s possible to ‘feel autistic’ without having some shared sense of what being autistic feels like, I’m not even sure I do ‘feel autistic’ at all, I just feel like me. It was only by reading other autistic people’s accounts of their own feelings, behaviours and interpretations that I started to realise that how I think, feel and engage with the world is more like other autistic people’s experiences than the non-autistic majority. Without a shared understanding (both as a diagnostic construct and as a social construct) of what autism and being autistic means I would have remained clueless.

“I’ve described my experience of undergoing the ADOS autism diagnostic assessment as the time when I ‘felt’ most autistic, as if it drew out all my inner autism, the ultimate ‘show and tell’. Looking back, I don’t think I was ‘feeling’ autistic, I was just an autistic under pressure, interpreting my own behaviours through my knowledge of how others have described autism.” (PS)

Diagnosis is more than a ‘label’.

The process of diagnosis, the lead up to the final ‘ta-dah you meet the diagnostic criteria’ moment can be as important as the ‘label’ itself. A good diagnostic process will explore strengths as well as weaknesses, will be broad-based to ensure any co-occurring conditions are identified, and will be an empowering experience. Sadly, most diagnostic processes seem to be heavily deficit-focused, narrow in scope, and can reinforce feelings of inadequacy and deficiency. A good diagnosis will go beyond merely naming the autism and will provide evidence of those strengths, needs and possible adjustments. Sometimes we don’t know our own strengths until someone else tells us, we don’t just want confirmation of all the things we ‘fail’ at, we need affirmation and hope too.

It might not be autism.

My experience suggests that most people who think they’re autistic, who have done some research, in particular those parenting autistic children or with other familial links, and who pursue diagnosis, almost always get diagnosed as autistic. But it might not be autism, or it might not be ‘just’ autism, there may be other or co-occurring conditions which might benefit from treatments.

It may help with identifying co-occurring conditions.

Autism does not exist in a vacuum, and it is extremely rare for anyone to ‘just’ be autistic. People are complex beings, but sometimes unpicking and identifying one thing makes it easier to see other things, resulting in improved understanding and enabling more appropriate supports and care/self-care.

To ensure any treatments given are suitable.

Many autistic people describe unusual reactions to medications, and there are therapeutic approaches which may not be suitable. We do not yet know enough about differences in autistic neurology and physiology, but the prevalence of epilepsy, autoimmune and connective-tissue disorders (eg Ehlers Danlos Syndrome) among the autistic population suggests that, if there are autistic tendencies towards unusual drug reactions, we need to know who might be at risk from complications.

Diagnosis may protect us as we age.

We still do not know enough about autism and ageing, but I want it recorded that I am autistic so that if I am subject to neurological tests or placed in residential care, my autistic neurology is taken into account.

Diagnosis can remove doubt and provide clarity.

Like many late-diagnosed autistic people, I found the period of wondering whether I might be autistic incredibly difficult, unsettling and anxiety-provoking. Often our need for ‘proof’, to satisfy ourselves that we are right and that we are indeed autistic, becomes overwhelming and all-encompassing. As parents, the need for a diagnosis for our children can engender the same thoughts and feelings.

“Suspected-but-not-sure was the most stressful time for me … I was suffering with almost daily meltdowns, anxiety etc but felt I couldn’t ask for accommodations or call myself autistic or anything until it was official. Because if I was wrong then I would have lied. And I might not have needed accommodations as much as a boot up the arse.” (RS)

Many of us feel we cannot ask for the help we need without evidence of our autism, the worry that we might be wrong being ever-present.

“I don’t have a diagnosis, but I am on a waiting list. Have been for almost 18 months. I would never say to anyone that I’m autistic. I’ve said to a few … that I might be/it’s been suggested that/I’m waiting for a diagnosis etc. It would feel like lying because I don’t have a diagnosis.” (GP)

Not all autistic people have the self-awareness or cognitive abilities to recognise their own autism. And what about the children?

Seriously, anyone who suggests that we should abandon clinical, medical and psychiatric processes to diagnose autism needs to think about what we replace it with, because we have to have something. It is beyond arrogant to claim that because some autistic people can identify their own autism that this should be considered as an alternative to clinical diagnosis (yes, I have seen it suggested that self-diagnosis is superior to clinical diagnosis). We, as in those of us autistics who can articulate this stuff, need to tread carefully and not throw less able autistics under the bus in our pursuit for de-pathologisation. We need to ensure that we don’t give clinical commissioners a ‘politically correct’, autistic-sanctioned justification for cutting back diagnostic services for children.

Clinical diagnosis can prevent misinterpretation of observed behaviours.

It’s never advisable to make assumptions based just on what we observe. We all have a different set of filters through which we interpret and make sense of the world around us, and this affects how we view what people do, and how other people interpret our observable behaviours. For some of us, the certainty of diagnosis equips us with a set of filters we can hand out to people we know and meet so they can see us through an autistic lens. This not only helps them understand what we do and why we do it, it can also help us feel less awkward and embarrassed when we behave in unexpected or unusual ways.

“I particularly hate shutting down. I’m a calm, compliant, easygoing person and when I shut down I’m an arse and then I’m being an arse who can’t talk. It looks like bad behaviour – it is bad behaviour – and I hate being unable to stop it.” (HA)

Self-diagnosis is not enough when you need help, support and access to services.

Like many, I would not have got adjustments at work or support as a disabled student without a clinical diagnosis. This is often a driving force for adults seeking diagnosis.

(n.b. this can also work the other way, for example, speech and language therapies are often inaccessible once a child is diagnosed autistic…)

“In an ideal world we would adjust things individually for every child at school/person at work etc and then we wouldn’t need diagnoses. We could just do whatever works for the person. But those kind of adjustments/that kind of individualisation costs money, so right now we have the diagnosis barrier. So absolutely essential to have a diagnosis to get any kind of help at all.” (GP)

“I would never question someone who has self-diagnosed but I do desperately want an assessment (and hopefully diagnosis) for myself. I do think it can make a difference psychologically and practically (it’s really hard to get support for autism but even harder without a diagnosis).” (FG)

Support needs aren’t always obvious.

Many, many autistic children and adults hide their difficulties, not always consciously, which means support can be hard to access without clinical evidence that the difficulties exist.

“I fought to get both my boys diagnosed as early as I possibly could despite neither really ‘needing’ any outside support right now because I know how long the process can take and I wanted both to have the diagnosis in place before I needed any official support for them. Because both boys … are very good at masking I feel I need the back-up of the professionals for anyone to take me seriously.” (FG)

Clinical diagnosis provides legitimacy and can be empowering.

Diagnosis has been positive, affirming and freeing for me and many others.

“For me, my diagnosis was a massive relief because it means I can understand who I am…” (HT)

“… I was only diagnosed in … and I am still processing it but actually having a diagnosis has allowed me to give myself permission to fail at things or not cope with them. All my life I have hated not being able to do stuff or cope with day to day life without becoming exhausted and stressed. Now I can say fuck it, there is a reason and that it’s ok. I can give myself space and I can tell others that I need space too, even people who don’t know I have a diagnosis, because I know. I only went for the referral for me!” (RT)

“Knowing it’s likely has in itself made a huge difference … it’s enabled me to realise that some things are just genuinely more difficult. It’s not that I’m lazy or stupid … I’m just different … I still feel fraudulent though. I feel like I really need that medical ‘yes’. A big part of my brain still says ‘what if you are using this as a convenient excuse, what if you are lazy, badly disorganised and a general disaster zone in public?” (WS)

“I needed the confirmation from an expert. Years of doubting myself and believing I was rubbish meant I couldn’t accept for myself that there was a reason for it. Even now I’m struggling to shake off the deep-seated belief that I’m crap, but I have the chance to work it out, which I never could have without a diagnosis.” (HT)

“I wasn’t comfortable with self-diagnosis. I needed it to be definite, clear cut. I also needed a diagnosis for work where I was struggling. It took 18 months from being referred to getting assessed which was a very stressful time … I cried with relief when I was finally diagnosed, I finally had an answer for why I am as I am! Now I’m much kinder to myself, I don’t beat myself up as much, I don’t have meltdowns as often. I managed to move jobs to something less stressful too.” (FA)

“I was self-diagnosed for a while but I felt like a fraud. However sure I was, there was always the worry that actually I was just a twat who couldn’t cope with the demands of daily life. The diagnosis was an enormous relief. So I’ve gone from someone who felt there was definitely no need to look into formal diagnosis to someone who desperately needed to know.” (HA)

Being autistic is more than an identity.

Without a doubt, autism has given me an identity and a sense of belonging I never actually knew I was lacking, but it is more than that, and it isn’t all positive. It has impacted on my life in so many ways, limited me and continues to limit me, and I need to be able to say that. We need to be able to talk about the hard bits of being autistic, to learn from each other and to ensure that we can get support. We need to acknowledge how hard it can be so that people don’t feel like failures when they’re having a tough time, and so that it is absolutely clear that we need supports and adjustments and accommodations.

“I wonder if anyone seeing ASD as an identity is missing the point somehow, because it’s not something you choose, it can be bloody difficult, and I’m not sure it’s something I would knowingly choose for myself or [my children]. As a family we can talk positively about ASD, but it’s alongside acknowledging that it can be very distressing and difficult.” (HT)

“I loathe the phrase ‘identify as’. It offends my love of clear language and efficiency because it doesn’t mean anything. The whole point of diagnosis is that the thing you’re being diagnosed with affects your life in some way negatively and that you get help for it. Taking on an identity is a way of joining a group. They are completely separate things.” (GP)

“… it’s not all positive and happy outcomes, I am really shit at this parenting malarkey, because three (possibly more) autistic people in one house is a fucking nightmare most of the time, with clashing needs left, right, and centre. My only hope to keep things ticking over … is by being permanently chirpy, active and flexible, which I can do for a day or so, then my mental health suffers…” (HT)

I am not saying that self-diagnosed people aren’t autistic…

The chances are that most ‘self-diagnosed’ autistics are indeed autistic.

“I have nothing against self-diagnosis as such, I think if someone has thought about it and researched it as much as I did during that time, the chances are they’re right. But it wasn’t for me, even now I can’t say ‘I’m autistic’ to a professional without clarifying that my diagnosis says Asperger’s.” (RS)

“I don’t have a problem with someone self identifying, and most autistic people I’ve personally met have to go through that stage before they can go on to seek diagnosis – let’s face it, there isn’t the understanding of ASD for anyone to be referred without a battle, unless they are obviously autistic.” (HT)

… but, diagnosis matters.

Hopefully this piece has given some food for thought, feel free to comment and share. Thank you for reading.

Massive thanks to the band of rebels who helped me write this piece.

NFO 😉

Accessing support as a disabled student 


Today I had my needs assessment for Disabled Students Allowance. It’s 12 years since I first wondered if I might be autistic, a little over 2 years since an initial assessment indicated that I was autistic, and a year since this was confirmed by a full clinical assessment and diagnosis. I should have had plenty of time to think about what this means, but every now and then something happens which reminds me why I needed a formal diagnosis and why recognising myself as autistic and disabled, and being recognised as such by others, is important. Not just important to me, but also important to others with ‘hidden’ disabilities, including far too many children in schools whose needs are going unmet because they don’t ‘look disabled’.

All through my son’s primary school years, and it’s a similar story for many parents, his need for support was a constant battle, with school minimising need and me advocating on his behalf. The SEN system for children is largely adversarial and parents frequently talk and write of ‘fighting’ and ‘battling’ for support. Despite claims of collaboration and child-centred planning and support, the very need for a parallel system of ‘independent supporters’, to help and guide parents through the system, is indicative of a system not fit for purpose. To design a system for parents and young people to use which cannot be used without external help is utterly ridiculous.

(The same thing has happened with the introduction of Universal Credit. The system is so complicated that independent advice centres have been set up to help claimants through the system)

My first experience of asking for support was through work. After increasing struggles and meltdowns I was referred to an occupational health doctor. I had a very supportive manager who had already responded positively to my own requests but we were keen to find out if there was more that work could do. Despite requesting an assessor who had autism experience I was allocated to a doctor with a specialism in epidemiology. It was clear when I saw him that he had googled autism while I was waiting and had no clue about what might be helpful to me in the workplace. His reference to autism as a disease and his assumption that I had some sort of middle-aged onset autism didn’t fill me with confidence. He was unable to make any suggestions and his report merely recommended the few adjustments I could think of.

I had heard positive things about Disabled Student Allowance assessments and friends had commented how easy the process was in comparison to their experiences with schools and other government departments. Based on my previous experiences of accessing support for my son in school, for myself in the workplace, and many years supporting people to access benefits, housing and other welfare provision, I was skeptical and decided not to apply to prevent myself any extra added stresses!

In the summer I met with a disability advisor at my new university who recommended that I really should apply for DSA and he started the process for me. After a palaver getting a passport and nearly giving up at that stage, I sent in my identification documents and a copy of my diagnosis summary.

This was not enough. DSA needed more evidence:

“For an autistic spectrum disorder, please arrange for your doctor or other qualified medical professional to complete the enclosed disability evidence form. Alternatively you can provide any of the following documents:

  • Statement of SEN and Transition Plans
  • Individual Education Plans
  • Learning Difficulty Assessments
  • A letter from your doctor or medical professional which confirms the following information:
  • a diagnosis of your condition
  • your condition is long term (more than 12 months)
  • how your condition has an adverse effect on your ability to carry out daily activities”

I replied:

“Further to your letter I have sent a copy by post of the psychological report outlining my diagnosis of Autism Spectrum Disorder. The report refers to a further report which was largely history taking, is deeply personal and private, and which, therefore, I will not be sharing. 

As I was not diagnosed until the age of 46, I do not have documents such as SSENs, IEPs, LDAs etc. Even if I did, they would be woefully out of date by now. 

You ask for evidence to support that my “condition is long term”. Autism is recognised as a lifelong neurological condition and, as such, can never be transient. I am unable to provide specific evidence of it being a long-term condition, as this is implicit in the diagnosis. 

I have not seen my GP about my diagnosis (or indeed seen my GP at all for the past 10 or so years) so he is not in a position to comment on how “[my] … condition has an adverse effect on … [my] … ability to carry out daily activities”. The diagnostic criteria is clear that to be diagnosed with autism: “Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning” (DSM5 ASD criteria). As above, it is implicit in the diagnosis that there are significant ‘impairments’.”

And I waited.

At this stage I decided it was all too much hassle and I would be fine without DSA as I’d been fine with my previous studies.

Eventually I received a letter informing me that I was eligible for DSA and today I had my needs assessment.

My assessment was carried out by an organisation called ‘Contact Associates’ who provided excellent pre-assessment information with clear directions, details about parking (very important!) and how long the assessment would take. My assessment was conducted by a mental health specialist who demonstrated an excellent understanding of the range of support needs for autistic students.

I went into the assessment thinking I didn’t really have any support needs. It was only through my assessor’s careful exploration of how I study and finding all the little supports and adjustments I craft for myself, that I realised I do actually have some needs for support. It’s not that I can’t organise myself and produce academic work to a high standard. I clearly have and can, or I wouldn’t be embarking on a PhD! It’s that the effort and time it takes for me to do that is more than an ordinary, non-autistic, non-disabled, student would require. By adding in some human and technical supports I will hopefully be able to study more efficiently and more effectively without sacrificing all of my time and well-being.

What was most remarkable about the assessment, and in stark contrast to my experiences dealing with school support for a disabled child, was the sense that the assessor was an ally and an advocate, not an adversary. All too often schools and local authorities disbelieve and disregard professional opinion, because they can’t see ‘the problem’. We have to repeatedly explain our children’s difficulties and stress that just because you can’t see it doesn’t mean it’s not there.

But, having completed (not without much angst) the earlier paperwork evidence stage which proved my eligibility, todays assessment took that as given. I have a diagnosis. I have been officially assessed by an experienced professional to have met the criteria for that diagnosis. Attending an assessment where I did not have to again prove my disability, or list my deficits, or explain how despite being a reasonably competent adult I do struggle with a lot of things most ordinary people take in their stride, was liberating and empowering. My assessor felt like an advocate, not an adversary.

The DSA system for proving eligibility clearly needs some work, but without doubt, as a whole it is a vast improvement on the SEN system for children and young people.

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.