Review: ‘The Duck’

Last night I went to see the first performance of ‘The Duck’, a one-woman play about autism written by Rhi Lloyd-Williams and performed by Lucy Theobald. Flyers described the play as a ‘glimpse beneath the surface of one autistic woman’s world’ which is, of course, an area of great personal and academic interest to me. I ignored the fact that I don’t like theatre performances, with all that proximity to people and enforced sitting still, and went anyway.

I hadn’t planned to write a review and didn’t take notes, but it really was very good and warrants more than a couple of tweets.

Lucy Theobald somehow managed, through Rhi’s incise writing and expert ‘how to be autistic’ coaching, to present something quite different to the composite and generic autistic characters we are so used to seeing. This wasn’t an autistic character developed to showcase autism, the sort of character we often see who shows us their autism through stereotypes and tropes. This was a complex and unique autistic characterisation, literally the ‘one autistic woman’ from the flyer, not a mish-mash creation developed to shoehorn in as much visible autism as possible.

Because autism isn’t really something we can see, autism is very often what people don’t see, particularly in autistic people like The Duck’s protagonist, who have learned to mask and mimic. Somehow, with only a bentwood chair, a bedsheet, some paper and pens, and in less than an hour, Lucy managed to perform not only a life story, but also presented an introduction to some of the key issues of concern to many autistic people.

A recurring theme throughout was the double-empathy problem, how non-autistics have just as much trouble understanding and empathising with autistics as the other way round. Issues of language, identity, sensory and communication differences, labels, diagnosis and the notion of the spectrum were covered. With luck the audience will have been sufficiently challenged and interested to want to go and find out more, as many questions were raised to challenge popular notions of what autism is and isn’t.

My only minor criticisms are that at times the narrative appeared to assume a non-autistic audience, and that a request for flappause (a silent applause of raised waving hands which originated in the Deaf community and is increasingly used at autistic events) instead of the very loud clapping and whooping would have provided an opportunity to highlight the impact of normative social conventions in a very real way.

This was a fast-paced, frenetic, funny, intelligent, occasionally sad, incredibly engaging and informative performance. This is the sort of autistic performance that I want to see, and that I want non-autistics to see.

Massive well done and thank you to Autact Theatre Company for showing what good autistic representation looks like. You’ve set yourself and others a high standard, it will be interesting to see what follows.

Free speech, bridge-building and stuff

Image shows a a scene of purple leaved trees surrounding a wooden bridge, overlaid with white text reading 'Building bridges'

My last post ended with me asking how do we build bridges across the spectrum?

There is a slight irony in this as I am an inveterate bridge-burner in my personal life. When faced with hurdles in relationships, friendships and other social interactions, my instinctive reaction has always been to move on and leave it behind, never to return. I didn’t really understand why I did this until I started exploring my autisticness and it seem fairly obvious now that I just didn’t have the social and communication skills to repair and re-build those relationships.

I worry endlessly about screwing things up with other people if I do or say or think the ‘wrong thing’, whilst also being incredibly annoyed at myself for thinking like that. It’s so easy to get into situations where a minor disagreement escalates into major conflict as tensions rise and views become more polarised, particularly when strong opinions and personal experience are involved.

In truth, I don’t know if I’ll ever get better at fixing the broken bridges in my personal life, but I really do want to work towards building bridges across the various positions within the autistic and autism world. I believe that it is this conflict between positions and the challenging of orthodoxies which drives progress and improves knowledge.

I see this bridge building as a sort of Hegelian Dialectic process, from thesis to antithesis to synthesis, operating on a number of levels and platforms: from the challenges to orthodox autism science research posed by critical autism studies; to the way ABA and other ‘traditional’ autism interventions are questioned and criticised by autistic parents/activists; to challenging accepted terms and categories and beyond. We are in a period of conflict, but that’s not necessarily a bad thing, for within the dialectic model it is this period of tensions and dialogue which provides the opportunity for building bridges, joining and working together.

Most people with a foot in the autism world, autistic or not, academic or not, parent or not, teacher or not, clinician or not, whatever and whoever, have a fundamental aim to make things better for autistic people. [Since this post was published I have been reminded* that there are rather too many scientists and researchers with little care for the ‘subjects’ of their research, for whom autism as a topic is of greater interest than autistic people. However, their detached interest doesn’t give them a free pass, we have to find ways to bridge this gap] What ‘making things better for autistic people’ means can vary dramatically, from those who want autistic people cured across a broad swathe of positions to those who see acceptance and societal adjustments as the key to improving autistic lives.

How do we reconcile dramatically different perspectives? Should we even try?

I think we should. But we have to start by understanding what brings people to positions we find uncomfortable, hurtful and sometimes quite horrific. And we also have to consider that sometimes new ideas can be considered hurtful to those who are invested in existing ideas and knowledge. We have to think carefully about how we present new stuff and criticise old stuff without it feeling like an attack on people’s sense of being.

I want to be absolutely clear that I don’t want to hear people saying horrible things about autistic people, I don’t want to be misrepresented and I don’t want autistic people to be the butt of jokes but I don’t think we can move forwards unless we engage with people who think and do and say these things. I certainly don’t think demonising people helps anyone, and I think we have to start with open and honest dialogue which means people need to be able to speak freely and be given the space and time to articulate their positions.

I never thought I’d be writing about free speech on this blog, and it’s not really something I think about very often. But a lot of my writing comes from my personal tensions, often, like my last blog, between the personal and pragmatic on the one hand and the intellectual and idealist on the other. The concept of free speech presents me with yet another tension: how do I reconcile my wish not to be hurt, misrepresented and laughed at with my belief that people should, as far as is possible within the confines of the law, be able to express their opinions and beliefs?

A twitter discussion this week has prompted me to explore this by working through my thoughts here on my blog. A bit risky, as I know it’s a controversial subject, but I’m doing it anyway. I want to make it clear that my perspectives often change and that what I say today I may disagree with at some later point. But right now, this is my position.

The twitter trouble arose as some autistic advocates/activists expressed their discomfort at the choice of keynote speakers for an autism research conference taking place in the UK later this year. Particular concerns were raised about the presence of an American autistic speaker and writer who has previously expressed views that some autistic people consider harmful to autistic well-being and antithetical to the aims of the neurodiversity movement.

The discussion moved on to broader themes of providing a platform to speakers who might present what are considered to be harmful views and opinions, and where do we draw the line. I realised that my ‘draw the line’ was perhaps a considerably higher bar than some others. Fundamentally, I believe that free speech is absolutely vital to democracy and progress. This does not mean I believe there should be no limits on what can be said, as I do not support the right to freedom of speech which incites crime, and I think balance is always preferable, but I do struggle with calls to suppress opinions which might be considered offensive or upsetting, just because they are offensive and upsetting.

The PARC PDA event I spoke at which led to my last blog post presents an interesting personal example. The other 2 speakers have expressed opinions, and published articles, which some in the PDA community consider to be hateful and harmful, yet there was little challenge from the non-PDA autistic community, indeed, many welcomed the debate. Should I have declined my invitation to share a platform with people who have been accused of hateful and harmful ideas? I don’t think so. Should we refrain from saying things because some people might find them hateful and harmful? I don’t think so to that too. Were those other 2 speakers hateful and harmful? No, they weren’t, they were challenging theories and practice on a theoretical level and that’s a key part of academic discourse and the production and evolution of knowledge.

In an academic context, such as the PARC PDA event, the ability to examine and interrogate what we know and what we think we know, without limits (but within the law of course) is vital, and should be expected. But what about other contexts?

Does my ‘draw the line’ line change according to context?

The more I think about this the more I realise that my line isn’t fixed, instead it can flex and adapt to context. Fundamentally, I support people’s right to think and express whatever they want (within the law), and I support people’s rights to hold views and offer opinions which I find abhorrent; but I also expect organisations which have specific aims and values to uphold those aims and values when, for example, putting on events and providing a platform.

My problem with the examples I’ve provided above isn’t so much that I don’t think they should be allowed to think, do and say what they did, because I support their right to do that. My problem is that what was said went against the stated aims and values of the organisations concerned.

The NAS claims to be the ‘leading UK charity for autistic people and their families’ which ‘campaign[s] for a better world for autistic people’. Kibo claim to want to ‘advocate for under-represented voices’ and ‘seek to broaden the social impact’ of their work. I believe that the NAS failed on both occasions to uphold their own values by providing a platform for speakers whose content most certainly did not contribute to a better world for autistic people, and that Kibo’s failure to consult and involve autistic mothers resulted in the very opposite of advocating for and amplifying under-represented voices.

But how do I square my doublethink? Can I really uphold free speech whilst also wanting some context-specific restrictions?

I think I can.

I believe that academic and research events, along with other events whose purpose is to encourage critical thinking and dialogue, must be able to present wide-ranging perspectives, and here my ‘draw the line’ is at its most liberal. Our universities and research bodies must have the freedom to push the bounds of knowledge, and sometimes this will be uncomfortable. But even uncomfortable material can and should be explored and disseminated to high ethical standards, it just takes some effort.

Events like NAS conferences, which have a broad focus and are often aimed at both specialists and non-specialists seeking ways to improve understanding and practice, need to consider more carefully how speakers’ material supports the organisation’s aims and values. Where a controversial speaker is booked, and controversy should not be seen as automatically bad, consideration should be given to how they present their material, perhaps instead of giving keynotes they could be included as part of a balanced panel presentation with more time available for discussion. Autistic people are often vulnerable and it is important that the ‘UK’s leading autism charity’ does not promote views which contradict and undermine its stated aims.

In many ways, fictional representations should have the most freedom to explore complex, challenging and controversial topics and ideas, but this can be problematic when material is presented as a representation of a marginalised social group. Fiction can be incredibly powerful and reach people in ways that other means cannot, and fictional characters often have a lasting impact that real-life descriptions and accounts do not. It’s not hard to see the impact of Rainman on popular notions of autism, how many of us have been asked what our own or our child’s savant skill is? My issue with Kibo was less about their poor characterisation and more about the hypocrisy of claiming to be socially responsible and representative, claims which added weight to the authenticity of the character.

What on earth does free speech have to do with building bridges?

We can’t even begin to build bridges between disparate viewpoints if we can’t talk openly and honestly about our positions. If people hold back for fear of upsetting or offending those with other perspectives the bridges will be built on shaky foundations and won’t last. We have to start from a position of laying our cards on the table and working out our shared goals. We all want to improve the lives of autistic people and that’s a bloody good place to start.

* thank you to Caroline Hearst for suggesting improvements to this post

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?

Invisible disability and classroom behaviour management: an analogy

Image shows a tabletop covered in brightly coloured paper and craft materials, overload with purple text stating ‘punishment doesn’t teach skills’.

Having spent far too many hours, weeks and years posting in online parenting forums, a regular feature is a teacher or parent complaining about the behaviour of an autistic child in the classroom. Having been the parent of ‘that autistic child’ being complained about, I have always found those kind of posts hard to deal with. I know that I did everything I could to support my son to learn the skills he needed, and to help him find better ways to communicate his feelings and interact with his peers. But it takes time, and it requires support from teaching staff and understanding from other parents and children.

Autistic and other disabled children have as much right to be in a mainstream classroom as their non-autistic and non-disabled peers. Legal responsibilities under education and equality laws require mainstream schools (in all but exceptional cases) to support children’s needs.

One of the biggest problems, of course, is that autism is an ‘invisible disability’, where autistic people like me (or my son or maybe you or your child) look like any other ordinary person. You can’t see my autism. You can’t see the things that make me autistic. You can only see my reactions to things. You might think that those reactions, those behaviours, are my autism, but they’re not. They’re just what I do, not who I am.

Getting support for any disabled child in school is often a battle, and I don’t want to suggest that children with more visible disabilities receive perfect or even ‘good enough’ provision, because far too often they do not. However, when a child has a hidden disability, and when they exhibit behaviour that looks just like ‘naughty behaviour’, it can be hard to get parents and teaching staff to understand that punishing the child for manifestations of their disability will not be helpful.

Some time ago, I wrote a reply on a forum where a parent was fuming that an autistic child in her child’s class was not being punished for ‘bad behaviour’. Because the child ‘looked normal’ the parent was pressing for the child to be ‘treated like everyone else’. I wanted to make the point that it was a futile request, and that what the child needed was to be taught the skills he needed, because punishment does not teach skills.

This is what I said:

Imagine the child had a different disability, say one that requires him to use a wheelchair. He keeps running over children’s feet and bumping into children, hurting them. He might have broken their toes or knocked them into furniture. It’s not because he wants to, but what if nobody has taught him how to steer and use the brakes? The child you are complaining about, like many other autistic children, needs to be taught to steer and stop his impulsive and explosive behaviours. Just like punishing the child learning to use his wheelchair won’t teach him how to steer and stop the wheelchair, punishing an autistic child for lashing out and exploding won’t teach him how to steer and stop his reactions. Someone needs to take the time to teach, model and practise appropriate ways to communicate and interact.

Punishment doesn’t teach skills.

Open letter to playwright Mike Heath and Kibo Productions

Please follow the link below, read, share and sign up.

“Many people will be surprised to learn that autistic mothers exist at all. But here we are: loving, affectionate, deeply engaged and often working and/or serving our communities alongside our parenting responsibilities. It is probably too ordinary to merit a dramatic presentation, and in fact too similar to the experiences of neurotypical mothers to merit any attention at all. That is not to deny that autistic mothers face multiple challenges in their everyday lives, but those stories are theirs to tell. Autism is a very broad spectrum indeed (or even a constellation), representing millions of unique experiences. The blanket assumption that we struggle to love is a lazy, outdated cliché.”

Read the rest: autisticmotherhood.co.uk/

There is also an autistic review of the play here: The Big Things (a play about female autism… or is it?)

And this wonderful piece of writing by Sonia Boué: #AutisticMotherhood misrepresented

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: Dear husband, I need your help…

image shows coffee in a blue cup and saucer next to a spiral bound notebook and pen on a wooden surface, with ‘dear husband, I need your help…’ in white lower case text over the centre of the image

Relationships between autistic and non-autistic people can be tricky, the different ways we express ourselves and our different needs can, at times, make it harder to support each other. Many of us autistics find it hard to verbally explain what we really need, especially when we are most distressed. Here, Lucy* writes a letter to her husband, the day after she’s had a meltdown, explaining how he can help her next time.

Dear Husband,

I wanted to talk to you about yesterday, but I don’t want to go getting all upset again so I thought I’d write it down. I write so much better than I can talk.

I have been so much better lately, not being so anxious, and I don’t want one silly incident to spoil all the progress and start me getting all obsessive and anxious again.

But my baseline anxiety is already higher than normal with going back to work and moving house, which means it is going to take less to tip me over into panic. And there’s not an awful lot I can do about that.

Yesterday, I admit it, it turns out I did overreact. But telling me I’m overreacting while I’m that upset isn’t going to help me calm me down. All that happens is I start to argue with you. I get physical symptoms from a panic attack, mainly because it reminds me of the times when things haven’t been ok, and then my brain starts to look for reasons why I’m panicking. The physical symptoms happen first, I’m not thinking myself ‘into it’.

As for preventing it from happening in the future, I will try phoning you. I don’t want to talk to whoever’s kickstarted the anxiety, because I’ve inadvertently upset people too many times by doing that. And it’s ok you saying ‘it won’t upset them’ but I thought that so many times in the past and it did, and then I’m the bad guy.

Realistically, I have Asperger’s. One of the symptoms is impaired communication. It’s not fair to expect me to take the whole responsibility for ensuring that we don’t get crossed wires, or that I don’t upset people without meaning to.

So I’d like you to do a couple of things for me.

Firstly, when these things happen, I’d like you to do the communicating for me. You have the social awareness, the filter, and the energy to put into not upsetting or offending other people. I don’t.

Secondly, I want you to try agreeing with me. Out loud. Instead of saying or implying that I’m over reacting. If you’re not disagreeing, I can’t argue with you and get even more worked up. Besides, there’s been times when you have been ‘on my side’ but keeping quiet for whatever reason and I interpret that as you disagreeing or being mad at me or something. If I’m in the wrong, there’s ways and means of talking to me about it and being stubborn when I’m upset isn’t the time. Let me calm down and then discuss it. If you can’t agree with what I’m saying because you’re sure I’m in the wrong, you could try saying things like ‘I can see you’re really upset/anxious’

Thirdly, the more I try and hold things in and not get upset, the harder it is until I blow. It’s like a coke bottle- every time something makes me anxious it’s like shaking it up. Eventually when you take that lid off there’s going to be an explosion. I need help to let it out a bit at a time. But if there is an explosion, shouting at the coke not to spill isn’t going to make a blind bit of difference. Once it’s started, it can’t be stopped. You just need to avoid getting covered, wait for the explosion to stop, then get mopping up. Give me a hug, I need that input sometimes to help me calm down. And encourage me to cry and let it out- if I don’t it’s storing up pressure for the next time.

I know that’s asking a lot of you, and it seems like I’m trying to avoid taking any responsibility for my own behaviour, but that’s not the case. Just that when I’m that upset, I’m not thinking clearly (if at all). I’m running on instinct. The priority has to be for me to calm down before I can think about what’s happened and how we can avoid it in future.

And at least I didn’t break anything last night. Small steps!

Lucy x

*name changed to protect privacy