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?

From ‘autism mom’ to autistic mother

image shows a wooden bridge across a stream in a woodland setting, with ‘from ‘autism mom’ to autistic mother’ in white text

‘Autism mom’ is a term often used by, and to describe, non-autistic mothers of autistic children. It’s a sort of identity, signifying her interest in and connection to autism. ‘Autism moms’ wear jigsaw piece embellished slogans, share memes about their ‘special children’, light it up blue and support Autism Speaks. They want to solve the puzzle of autism and unlock their children from their autistic prisons.

‘Autism moms’ are often passionate about getting the best treatments for their autistic children and keen to measure and compare progress. They love their autistic children and want to cure them of their autism. They spend their savings and pension pots on expensive treatments, some fairly benign, others fairly harmful.

‘Autism moms’ talk of their despair, their fear and the horrors of their daily lives. They understand when fellow ‘autism moms’ murder their own autistic children, because they understand the despair and the the nightmare of autism parenting. They raise funds for research and rejoice at scientific discoveries which suggest a cause for autism, hopeful that cause might lead to cure and prevention.

‘Autism moms’ are often criticised by adult autistic activists for not properly understanding autism. When it is suggested that the path they tread is misguided or dangerous, ‘autism mom’ claims that her child is more severe or more different to the autistic adult, that she knows her child best and has their child’s best interests at heart.

‘Autism moms’ are also criticised for wanting to cure autism, for striving to take away an essential part of their children’s personhood. Autistic activists argue that autism is a neurological variant, not a disease or affliction, and that acceptance and accommodations are what’s needed, not treatments and cures. ‘Autism moms’ are derided for discussing the day to day challenges of parenting their autistic children and told to listen to and be guided by autistic adults.

*

My introduction to autism began as a (seemingly) non-autistic parent to an autistic child. I was never a full-on ‘autism mom’ as described by the gratuitous stereotype above, but I can relate to the sentiment. I shared the worst and the best of my son’s behaviour and development on social media (albeit anonymously). I rejoiced when he behaved more like, and showed signs of development in line with, his non-autistic peers. I read and read and read to find ways to help him develop his emotional and social skills. I tried to help him ‘fit in’ with his non-autistic peers and shuddered with embarrassment when he showed his autism in public.

I looked for the magic bullet to help him overcome the problems of his autism and be more like his typically developing peers. I wanted his life to be easier and happier.

Parents (almost always) want the best for their children, we certainly don’t want our children to struggle. From the moment they’re born our children are measured, weighed, charted and checked, their progress against developmental norms compared and recorded. As parents we watch for signs of the next steps, celebrating when they make good progress or are ahead of the curve, worrying when we see delays. We see our children among their peers and cannot help but compare. Our children will grow up into a world made for norms. We want to smooth the path. We worry more. We do more. The search for the elusive key becomes all consuming.

I understand why ‘autism moms’ wear themselves out trying to ‘fix’ their autistic children. I understand why they want to identify the causes of autism and prevent more hardships and heartbreak. Parenting an autistic child in a world built upon and for norms is not easy. Lack of understanding, poor educational options, constant battles for provision and support, balancing needs and resources within the family, it is hard and it often feels relentless.

*

As I meander through this new world, with my newfound autistic identity, I struggle at times to consolidate the different perspectives. On the one hand, I am a parent to a child who has had way more struggles than a child should, and I want to do everything in my power to ameliorate those struggles, whilst on the other hand I want to celebrate his (and my) differences, and glory in the wonder of our neurodivergence.

I listen when autistic adults offer advice to parents of autistic children. I read carefully when autistic adults write articles criticising ‘autism moms’ and their choices. I constantly compare what’s being discussed to my own parenting, wondering if I measure up, am I doing my son a disservice, am I good enough? After a lifetime of never fitting in, I can’t help but wonder where I fit. I still feel as if I have a foot in the warm shallow end of both ‘sides’.

The reality is that it wasn’t working out I’m autistic that influenced my parenting. It was much more that as I became more confident as a parent I became more able to do what my son needed. I no longer felt like I had to perform some idealised version of the ‘good mother’.

*

I started writing this post nearly 2 years ago and had planned it (rather grandiosely perhaps) as a way to try and bridge the gap between what sometimes feels like the warring factions of ‘autism moms’ and autistic activists. I really struggle when I read accounts by autistic adults who are not parents themselves (for example Temple Grandin’s ‘The Loving Push’ book) giving parenting advice to parents of autistic children. I’m not sure non-parents can ever really understand being a parent any more than non-autistics can ever really understand being autistic.

I also struggle when non-autistic parents of autistic children are told they just need to understand and listen to their child better, as if that’s the magic answer. My autism does not give me some special power to intuitively know how to parent and support other people’s autistic children. I didn’t have all the skills I needed to parent my own child so how can I know what’s best for another child, who is not part of my family?

*

I know I am not alone as a parent trying to balance preparing my child for a life in a neurotypical-centric world whilst trying to preserve his right to be his own autonomous autistic self. It can be a tricky balance, and I often worry I’m missing something important. I do not agree with many ‘autism moms’ who see ‘normal’ and non-autistic as the ideal to aim and fight for. I do not see compliance with neurotypical expectations as desirable, in fact I see it as antithetical to self-advocacy.

If I can send one message to ‘autism mom’ it’s to encourage and prioritise your child’s autonomy over and above everything else, for this is what will help keep them safe in the future.

For more on autonomy, please read Jamie Knight’s article here:

Spoons and other metaphors: how I use my social care budget

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.

Time and space in autismland

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[image shows an old clock face, stuck on quarter to six]

I spent a day at work this week where I only talked to people when I needed to or wanted to. I was genuinely surprised at how much better I felt at the end of the day. Instead of using up precious resources to perform exhausting and non-essential social acts, I ended the day with resources to spare. Spare resources means having time and space to choose things I want to do, not being restricted to only things I have to do.

When I talk about my resources, I mostly mean my cognitive and emotional capacity. My ability to think and cope fluctuates depending on the demands placed on me. This includes demands from other people and demands I place on myself, alongside family, cultural and societal demands. Managing these demands requires time and space. Time to think, plan and recover. Space to be me and to remove myself from demands.

I spend a lot of time planning and preparing for the day and the days ahead. I perform a series of mental calculations working out how best to prepare for demands and how I plan to recover afterwards. As well as thinking time, every demand requires time before and after. A lot of my time is spent thinking about and calculating time.

My two consecutive working days every week use up four days of my week. The day before is taken up with preparing, worrying, planning. The day after is spent recovering. If I have a dentist appointment, need to go shopping, visit the bank or attend a meeting at my son’s school, I go through the same process, allowing time before and after. I try to make sure these activities are spread out to allow sufficient time in between for necessary preparation and recovery time.

Ordinary activities seem to take up more time for me than for many people, even something as simple as my car needing a service. Most people drop their car at the garage and get on with their day, knowing the garage will phone at some point. They might worry about an unexpected bill, but their day carries on as usual.

For me, I first have to phone the garage. This takes time planning the call and rehearsing what I need to say. Then I have to plan and rehearse for dropping off the car. I then need to be prepared for the phone call from the garage to tell me the car is ready or to give permission to carry out repairs. After these actions I spend time going over and analysing the interaction, fretting about faux pas and all the things I forgot to say and ask.

I find myself unable to do anything until I’ve heard from the garage. I worry that if I start something I might be interrupted. Being interrupted is one of my least favourite things. If I start a task I need to know how long I will spend doing it and have a plan in mind for the next task.

If the garage haven’t phoned by the time they said they would, I worry further. Should I wait or should I phone? What if I gave them the wrong number? What if they forgot about my car? What if me phoning takes the mechanic away from my car, delaying the service? Will the mechanic be annoyed I’ve phoned? Will I come across as rude for phoning when he said he would call? Am I being a nuisance? What exactly is the convention and why didn’t anyone teach me?

Managing my time effectively provides a foundation for my days. Sequencing demands makes them easier to manage. But if my day is disrupted I struggle to move forwards. If I have to miss a part of my routine it is almost impossible sometimes to do anything at all. When my boiler broke, and I was unable to have my planned bath that morning, I found it impossible to do any of my planned tasks that day. I couldn’t move to the next task as I hadn’t completed the first. It seems irrational and illogical and really quite flaky, but this is how it is.

I also spend a lot of time prevaricating and avoiding demands. I am aware that I need to do certain things (tidy a room, carry out repairs, email school, weeding) but I put them off. It doesn’t stop me thinking about these things, I just find it hard to move from thinking to doing. I waste a lot of time.

Problems with transitions between activities are often talked about in regard to autistic children. Us parents work hard to find ways to bridge transitions and make them easier for our children. We might use visual schedules, timers, verbal reminders or create novel ways to bridge the gaps. I need to find better ways to support transitions in my own life. I need to find a way to make the start of new activities and demands easier for me. I need ways to better manage disruption. I don’t want to waste so much time.

For me, space is both an internal and an external factor. I need inner mental space to think and I need outer physical space too, free of the demands of other people.

Having mental space and the capacity to use my emotional and cognitive abilities as best I can is largely dependent on the absence of demands and the presence of physical space. Physical space for me isn’t about vast swathes of uninterrupted countryside (though that would be nice) or large indoor spaces. It’s about having a physical space where I feel comfortable and protected, a space where I won’t feel overwhelmed by social or sensory demands.

City centres, busy supermarkets, tourist attractions in the height of summer and open plan workspaces all take up too much space and can result in me shutting down, unable to perform all but the most basic functions. If I can hold it together at the time I might meltdown later. But even a meltdown requires space. You can’t release the pressure until you’ve escaped the vacuum, which may not be a scientifically correct analogy, but it is how it feels to me.

Finding ways to create space can be challenging when there competing demands on my time. But it is essential. My ‘special interests’ both create and occupy space. When I am engaging in my crafting activities I become consumed by the process, but it also frees space for other thinking. I am more able and more constructive when I am engaged in my chosen activities. The filling of space by choice rather than by demand seems to open up more space. It makes me more capable and more competent.

What I am realising is that though I have plenty of time, I struggle to find space. The time I waste on planning, preparing and recovering stems from a combination of anxiety and executive functioning problems. I am trapped in a vicious cycle of demands, anxiety and poor organisation. I need to make time and space for the things which relieve the pressures, and then I may gain some time and space to deal more effectively with the demands.

Moving forwards, having spent a day ignoring non-essential social demands, I realise more than ever that I need to find ways to remove, ignore or sidestep some demands so that I have some time and space left for me. It won’t be easy, I have many years of social expectations and habits to change. But I’m going to try.