Encouraging and developing self-advocacy in our children and why the language we use matters

Image shows the sea in the background, with a close up seagull to the right with its beak wide open, below the beak and centred on the image white text reads 'How to talk so kids will learn how to speak up for themselves'

I really, really, really, don’t like the term ‘special needs’. I don’t particularly like the term ‘special educational needs’ much either, and can get a bit twitchy when the acronyms are used as prefixes, for example ‘SN child’ or ‘SEN child’. Urgh, it’s the ‘special’ bit I think. Scotland uses ‘additional support needs’ which grates less, and additional feels more neutral than special, but ASN is phonetically a bit too close to the old ESN acronym for ‘educationally sub-normal’, which was particularly awful.

‘Special needs’ is often used as a way to avoid using the words disabled and disability when describing, err, disabled children. Referring to adults as having, or being (WTF), ‘special needs’ seems reserved for those with learning/intellectual disabilities, when it’s typically used to pity and infantilise. The way that ‘special’ has become used as a way to insult and demean suggests to me it’s time for a re-think.

I’m aware that ‘special needs’ and ‘special educational needs’ are also used to describe children who aren’t disabled. It’s probably helpful to have an umbrella term for both transient and enduring support needs, particularly in schools. I think my preference would simply be ‘additional needs’ and/or ‘additional educational needs’. Both seem more accurate and less loaded and possibly harder to corrupt into terms of abuse. Maybe.

But, what bothers me most is that the language we use to describe disabled children, and to explain disability and support to disabled children, can make developing self-awareness and self-advocacy harder. I know that not all disabled children will be able to advocate for themselves, but for those that will, or those who might, I have some suggestions:

Use words that they’ll use as adults

Think about the words that adult services and adult self-advocates use. My son was diagnosed with Asperger Syndrome when he was 6 years old, but we’ve interchangeably used Aspergers, autism, autistic and autism spectrum/autistic spectrum. I’d like to say this was a brilliant bit of forward-thinking, but it wasn’t, it was purely accidental and largely resulted from my own dithering around the person-first language I’d been trained in and the identity-first language that felt more personal and powerful. Alongside using the word disabled, and other terms that are specific to what disables him, he’s developed a broad and varied vocabulary, not just to choose for himself, but so that he isn’t stymied when he encounters someone who uses different terms.

My hope is that as he approaches adulthood he is reasonably well-equipped to engage with both professionals/service providers and with other autistic and disabled advocates and activists. This would be so much harder if he’d only heard us describe him as ‘being special’, having ‘special needs’ or if, like some parents, we’d never even told him his diagnosis.

Don’t minimise or rely on cutesy words

Words like autism and disability continue to scare some parents. It’s understandable given that the discourse of child development uses words and phrases like ‘risk’ and ‘red flag’ (and delay, disorder and failure) to describe and highlight anomalies (I view anomalies as a neutral term, different not less and all that). Parents, teachers and clinicians often skirt around language, avoiding those apparently scary words, and try to use what’s seen as more child-friendly language to describe children. For example (and this is not exhaustive!):

Aspie

Autie

Fidgety

Shy

Special

Highly sensitive

Indigo child

Twice exceptional

Sensitive

Quirky

Different

Fussy

Spectrummy

Wriggly

Slow

It’s not that we should never use these words, I just think they shouldn’t be the only words we use. It’s a bit like teaching children anatomical terms for their bodies, we need to provide children with the correct terms to describe themselves as well as their bodies.

(Also, try to avoid using words which suggest naughtiness or nastiness, even if you think they can’t hear or understand you)

Model advocacy

Try not to hide what you do to advocate for your child from your child. As far as is possible, involve and explain what you are doing and why, especially as your child gets older. Whether it’s sending an email to school, making an application for extra support, asking for help, or filling in a disability benefit claim, talk about it and involve your child, as one day they might or will need to do these things for themselves. Involving and engaging children in their support and reviews not only reminds professionals that there’s a real child involved, it also gives our children a chance to be a part of the process and learn new and useful skills.

If you are autistic/disabled yourself, or have any support needs, talk to your child about it. I am guilty of unintentionally hiding how hard some things are for me, but I’m trying to be more open and honest about what supports I’ve had that have helped me live, work and study better.

Encourage challenge

Don’t be a doormat, show your child that you will stand up for yours and theirs and other peoples rights. If they spot an injustice help them address it, write an email together or go and complain. Discuss what’s going on in the world and explore the sorts of things ordinary people have done and can do to make a difference.

Don’t force compliance

This is probably my biggest worry with many of the interventions used for autistic children. Whether it’s ABA or social stories or emotional literacy, or whatever school and professionals are offering, we need to check and double check that our children aren’t being taught or conditioned to ignore their own discomfort. Teaching and supporting self-advocacy and autonomy, and especially bodily autonomy, is vital. For more on autonomy, see this post.

Final words

The words we use to describe our children become the words they use to describe themselves. These words and the language we give our children to describe themselves matter. Hopefully, our children will be adults for far longer than they will have been children, so getting the foundations right, giving our children words and language and skills which empower them, which make them feel good about themselves, perhaps which enable them to find their community, and which help them self-advocate, matters.

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.

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

Looking back and thinking forward

Parenting, hindsight and independence

Being the parent of an autistic child (or any child with additional needs) brings a whole load of extra challenges and expectations. I can’t speak for parents of those with the highest support needs, but as a ‘can almost pass for normal some of the time if the conditions are perfect’ autistic parent of a ‘can sometimes almost pass for normal if the conditions are perfect and he wants to’ autistic kid, it’s not as simple as intellectual ability plus verbal skills equals capable of independent living immediately upon reaching adulthood.

Despite the fact we know that autistic people often have ‘spiky profiles’*, ‘uneven development’ and ‘splinter skills’ there can be a lot of pressure to ‘support development’ and ‘encourage independence’. We often internalise the message that we need to be pushing our children to ‘keep up’, ‘catch up’ and ‘make progress’, and can be left feeling incompetent and inadequate when our children continue to need supports and adjustments (it’s even worse when other parents of autistic kids assume that because their offspring can do something yours should too).

Parenting forums and support groups for parents of autistic children are full of parents wanting to push their child’s development and meet typical milestones, desperate to make sure seemingly important developmental steps aren’t missed, keen to set their child on a trajectory towards independence. Once our kids hit their teens there can be a real sense of urgency to prepare them for being independent adults.

Independence is often heralded as the ‘optimal outcome’, but should it be? There is nothing inherently wrong with needing support or relying on other people to help. When wealthy, successful people employ cleaners and gardeners and cooks and drivers it’s seen as a status symbol, yet when disabled people (who might also be wealthy and successful, but far too often are not) employ others to meet daily needs it’s seen as dependence which us parents are led to view as a ‘Very Bad Thing’.

Personally, I think the teen years are tough enough for all kids, so my goal is to make them as easy as possible. Yes, we do need to keep a little corner of an eye on the future, but we also need to relax a bit and go with the ebb and flow as our kids grow up. Hindsight can show us where we laid good foundations in previous years and give us clues about where we need to shore them up for the future.

If parenting is about supporting and preparing our children for the future, whatever that future might be, every now and then it’s worth looking back to see what’s worked (and what hasn’t) and think forward to what might be useful for the future. In my experience, it always helps to hear from parents of similar children who are a few years ahead to help prepare for transitions and potential challenges.

My top 5 tips for parents of younger autistic children to make the teen years easier:

Don’t waste effort on transient skills

If your child doesn’t like playing in the playground or has unusual taste in toys and books, that’s ok. Don’t spend hours and hours encouraging, cajoling or forcing them to do things you think they should be doing so they can ‘fit in’ – there’s a good chance that by the time you’ve ‘succeeded’ their peers will have moved on to something else. It is far more useful for the future to support your child to be confident and happy doing what they enjoy. And it’s quite possible that what was an unusual interest at 7 becomes the foundation of a successful career by 21.

Future proof any routines

One thing I’m sure most parents of autistic kids know is that you can never tell which routines will be resisted, which will be open to change and which ones will become the immovable bedrocks of your child’s life, so it is really worth thinking ahead when setting up and agreeing routines. One of our rigid routines is a daily bath before bed, and now we are in the teen years, I am so glad we kept this routine! Whilst a younger child might accept a routine of bathing or showering on Wednesdays and Sundays, teenagers and young adults will almost certainly need a daily bath or shower.

Don’t force your kid to follow the crowd

I remember when my son was younger, and (seemingly) everyone telling me he would eat better/play better/learn better once he went to nursery/school/clubs. Back then the idea that his life (and ours too if I’m honest) would be easier if he copied his peers and adapted to ‘fit in’ was tempting. But it never happened. Now I’m proud of his stubbornness and immunity to peer pressure. He has found a group of friends where he is valued without having to perform or mask, and I’m hopeful that this will be a protective factor in the future.

Support self-regulation

Something I’ve learned in my work with offending adults is that if children and young people are controlled and shaped through external controls (eg rewards, consequences and punishments) they can fail to develop their own internal controls. I’ve met too many young adults who know their behaviours are destructive but they don’t know how to stop, and it’s a lot harder helping adults learn these skills than the child you have 24/7. We need our children to recognise their own cues (hunger, thirst, tiredness, stress) and learn how to respond to them. We need to help our children develop their own personal problem-solving toolkits. We must empower our children to self-regulate their own lives as much as they can. Self-awareness is vital for our children to become self-advocates.

Respect and encourage bodily autonomy

Don’t force unwanted tickles, hugs, kisses and physical contact onto your children. If they don’t like it you need to stop. Not only might it be causing sensory distress, but it sends a dreadful message about consent. We know that autistic children, teens and adults are more vulnerable to bullying, abuse and exploitation and we must equip them with the ability and confidence to say “No”. We must not teach them to ‘get used to’, ignore or override their discomfort.

If you have any more tips, please leave a comment. I would especially like to hear from autistic young adults and parents of autistic older teens and young adults who might have some tips for me and other parents of teenagers.

*apologies for overuse of ‘quote marks’, they mostly indicate my use of terms that I am not overly keen on but which I accept have a shared meaning.

How not to do an autism conference: response from the NAS


Today I received a response from the NAS conference team following my blog post raising concerns about last week’s Autism and Mental Health conference. It is copied here in full with the writer’s permission:

Dear Paula,

 

Thanks again for your email and apologies I didn’t get back to you yesterday as planned. It’s been really useful for us to have this feedback and to think about how we can make our conferences more autism friendly.

 

We will certainly be incorporating many of the suggestions you have made into the logistics for our one-day conferences, such as providing lay out plans and quiet lunch areas. So thank you for raising these points. Some of your suggestions are part of our current practice, but we realise that we need to do more to ensure this practice is properly publicised and followed at all our conferences.

 

With 400 people at the Mental Health conference, we recognise that crowding was an issue. We rely on our venues to tell us how many people their rooms can accommodate and, in this case, we believe that their estimate of what the spaces could take were overly optimistic. We will be aware of this when using this venue in future and limit the numbers able to attend accordingly. We will also give feedback to the hotel in this regard. We understand that the large numbers attending led to long waits and crowds at lunch and to use the toilets and we do apologise for that.

 

With regard to the other points you have raised:

 

1) We will now put a much more spaced out row of chairs at the back of the room and will ensure this is reserved for autistic delegates who need space around them.
We already offer to reserve specific seats for delegates who need it (and there were several who reserved seats at the conference last week). The ‘special access requirements’ section on our registration forms is where delegates can ask to reserve a particular seating arrangement or for other specific needs (such as large print documentation, etc).We will now make this clearer on the form.

 

2) Our standard practice is to ensure food is properly labelled at refreshment breaks and lunchtime, but we apologise that this didn’t happen at last week’s conference. We will check that this has been done at future conferences.

 

3) Until now, we have not had specific rules for our quiet room. This is because we didn’t want to restrict people from using the room in the way that they need to, in order to feel most comfortable. Following your comments, we will now survey autistic delegates and ask whether there is a preference for clear rules about how to use the quiet room. If delegates tell us they would prefer a set of rules, it would be great if you and other autistic people could work with us to help decide what those rules should be. Could you let me know if you’d want to help with this?

 

4) Parking/ and more lunch and toilet areas:
When holding events for such a large number of people, unfortunately it is rare to find venues with more parking available than the hotel where the conference was held. However, as mentioned in your blog, we did warn people who needed to drive to arrive early to ensure they got a parking space, and also to encourage people who didn’t need to drive to consider using public transport.

 

5) In regards to sensory issues, we will no longer use the bell to signal the start of sessions.
With regards to the points you raise about Tony Attwood and his inappropriate use of humour.

 

We are very sorry that Professor Attwood’s presentations were upsetting to you and that this contributed to the distress you experienced at the conference. We send all our speakers an ‘’acceptable language’’ document prior to conferences. This was developed for us by a group of autistic adults and we ask that speakers respect the guidelines outlined in the document. However, the document does not currently address humour, and we will look at incorporating a section regarding humour into the guidelines, using the very excellent open letter Kate Fox drafted for guidance https://katefoxwriter.wordpress.com/2017/05/

 

Once again, we are sorry about your difficult experiences at the conference. We really do appreciate you taking the time to write to us: it’s been very helpful for us to have this feedback.

 

Going forward, if you would be interested and are available it would be great to have your input on the quiet room rules, and the new ‘humour’ section in the acceptable language guidance document. Would that be of interest to you?

 

Best wishes,

I have replied accepting their offer to be involved in any way to help make future conferences a better experience for autistic delegates.

shit I learned at #speakersday

I don’t usually swear in posts, but I do swear a lot when I speak, and I am writing this while I recover from a long drive, a couple of nights away from home and lots and lots of peopling, meaning my ability to put words together is a bit challenged, so I need to make full use of whatever vocabulary I can find. Yesterday I attended the National Autistic Society’s ‘Public speaking for autistic people’ course in Wrexham, 210 miles from home. It was brilliant and illuminating and I learned shitloads of stuff.

I learned that I really really like driving on motorways, especially if I imagine that I am appearing in a Top Gear challenge. My friend @PdaSoapbox was travelling by train from the opposite direction, and we supported and encouraged each other by text throughout the journey (I only texted when I stopped for breaks, not when driving). She was largely unaware that she was part of my imaginary challenge, and I don’t think she’s a Top Gear fan… but it made me laugh to myself as I drove, because, contrary to the stereotypes, us autistic people can imagine and we do do humour.

I learned that being drawn towards the written word is a pain in the arse when signs are bilingual. If there is written information within my field of vision I have to read it. It doesn’t matter what it is, I have to know what it says. This is fine with English language words, which I can scan and process quickly, but less so with Welsh. I have nothing against Wales or the Welsh language, but bilingual signs mean my brain tries to make sense of all the words, including the Welsh words, which I don’t have a hope in hell of decoding, but my brain has to give it a go just in case. I did not miss a turn until I crossed the border 😉

I learned that being among autistic women is perhaps the most empowering and comfortable place in the world to be. I have never felt so normal, so like other people, it was magical. Meeting people I’ve only ever interacted with on the internet in real life was like meeting up with the long lost friends I never knew I had.

I learned that friendships made online can be as strong, meaningful and real, and engender the same loyalties as those made in the ‘real world’.

I learned that I’m not the shy introvert I had always assumed myself to be. I haven’t been avoiding social interaction for most of a lifetime because I didn’t want to or didn’t need it. I’ve avoided it because it’s so hard when you don’t know and can’t follow the social rules of the majority neurotype. I actually love just chatting with people, singly and in groups, and yesterday I could do that without the complicated interchanges usually required. There were no raised eyebrows and affected manners, as people just did what they needed to do. Stripped bare of the tacit and often arbitrary rules of the typical social world, interaction became easy and natural. People and topics ebbed and flowed.

I learned that I am not able to easily switch between roles. As part of the day we had the opportunity to perform a brief presentation and receive feedback. I had not prepared one of my own as I knew it would make me more anxious on top of all the other anxieties. It’s not uncommon for me to make a decision about something without knowing why and then having my ‘Oh fuck, that’s why’ lightbulb moment later on. Partway through the morning yesterday I realised that my trepidation about doing a presentation was because of this struggle with switching between roles. To engage with the training and learn well, I needed to be in ‘listening and learning’ mode. To do a presentation I would need to be in ‘controlled and performing’ mode. There wasn’t time to switch roles and I knew as soon as the afternoon session began that I had made the right call, I was in no place to perform ‘speaker role’.

I learned more than I could have hoped to about public speaking. Sarah Hendrickx and the NAS training team should be commended for providing such a thoughtful and perfectly executed event.

Throughout my professional life I attended a lot of training, this may have been the first time I haven’t wanted a training day to end.

Thank you to everyone involved and everyone who attended.

What a day 🙂

Performing normal

I am beginning to think that us late diagnosed autistic adults deserve Oscars and BAFTAs for our performances. We study our roles and learn our parts with great dedication. We are method acting every day. We knock spots off Daniel Day-Lewis. We immerse ourselves in the worlds of those we seek to emulate. We often maintain the role every waking hour. We mostly do it without even noticing. We work hard to perform normal. We are unconsciously competent.

Until we can’t do it any more.

It starts in childhood and probably never really ends. Even when we have our autistic epiphany it’s a hard habit to break. It can be a useful skill if we use it wisely. It’s like an ultimate special talent. At the height of our performance career we slip chameleon-like among social worlds, studying our characters, always studying, trying to be better actors, better characters.

But over-use comes with a price. For us, it isn’t a role which we get to leave at the end of the contract. This is our life and performing normal is exhausting. Maintaining the roles we construct, often subconsciously, very often leads to our downfall. We risk losing ourselves in our performance.

If we are lucky enough to realise we are autistic, and we have sufficient resilience, confidence and support, we can free ourselves from the performance. This is where I am now. I am trying to drop the performance and be me. I have become more conscious of the roles I perform and can sense the changes from one role to another. It is unsettling and disconcerting to acknowledge the process as I shift through the social realms I inhabit and encounter. I have moments when I feel like I’m in a body-swap movie, like I am being inhabited by an interchangeable set of personalities and competencies.

Training for these roles starts from birth, we are continually measured against a set of criteria based on population averages. We are pushed to meet typical developmental milestones and encouraged to perform to the audience. We are applauded for using speech, for playing nicely, for sharing, for good manners and for following the rules. Some of us find these things harder but we learn quickly what is expected and we do our best. Even when we are teeny, we seek approval. We learn that compliance is good, challenging is bad. We are being shaped to fit the norms.

Girls are almost certainly more heavily burdened with neurotypical social, emotional and development expectations. School is where we undertake our apprenticeship. It is in school where we find our first role models, the happy social butterflies who make it all look so easy, so effortless. We try so hard to be like them. We might copy their interests, their style, their mannerisms as we desperately try to fit in, to be normal.

Some are lucky and find a niche in adulthood where they can bloom, able to drop the performance. Many start to experience deteriorating mental health. Some, like me, muddle along, performing normal and wondering why we find life so hard, and why are we so exhausted by normal when everyone else seems fine.

Autistic realisation brings new insight. As well as being more aware that I am performing I am also more aware and, perhaps more consciously, planning and preparing for every possible encounter. Every possible social encounter has to be considered and planned for. I draw on my history, trying to learn from my mistakes. I wish I could forget all the mistakes.

I go to bed planning the next day and I wake revising and rehearsing my plans. As I drive to work I am reminding myself of the potential subject matter I might encounter and ways I can show an interest in people’s lives, because that’s normal. Has anyone been on holiday? How was the night out? Is an ailment better? How was the move? I don’t need to remember what I need to do at work as that is on my list. But I also have to maintain a virtual list of things that I should remember about people’s lives. I am mostly not interested, but I do it anyway. Performing normal means being interested in other people and the trivialities of life.

Life is a long list of encounters, each with different expectations, some with very subtle differences. Lots of rules. Lots of roles.

In a typical day at work I have to adjust to the different social expectations of my immediate colleagues, the ones I share workspace with, people I know and bump into around the building, people I don’t know who I bump into and people I don’t know who invade our workspace. I need to be able to make requests of support staff and defer to senior staff. I have to adjust for client needs, though somehow that is easier as I am in my professional role and that’s my favourite work role.

Outside of work I have different roles to perform when thanking the postman, bumping into neighbours, attending school and medical appointments and meetings. Social interaction with friends requires even more planning as I fear getting it wrong and losing friends. I have lost many wonderful friends over the years when my performance was clearly not up to scratch.

My autistic realisation has helped me be more honest both with myself and my friends. I have disclosed my autism to my immediate colleagues, and am getting better at dropping the performance and being honest about what I need. I have noticed that when I drop my performance I am more animated, I gesticulate and I am just a little bit less inhibited. I am loosening up and freeing myself.

My son’s current favourite insult is to call me ‘normal’. I am normal. Normal for me.

Could do better

A message to professionals working with autistic mothers of autistic children

This is the second part of my writing up of a talk I gave at an NAS conference. It is in some way the most important part of these three linked blog posts. This was and is my platform to tell professionals, both those working with us and those working with our children, what we need, what we struggle with and where you are getting it wrong and could do better. This is not an exhaustive piece, there is much more to be said, but it is a place to start and perhaps a way to encourage dialogue.

This post is primarily written for professionals working with autistic children, though much of the advice applies to adult services too. My focus is autistic mothers, though much will also apply to autistic fathers, and I am adopting a female default.

Remember, as was highlighted in my last post, there is a reasonable chance that most of the autistic mothers you encounter will not be diagnosed, and may indeed be oblivious to their own social and communication difficulties. By making your systems and processes more adapted to the needs of autistic mothers, you will be supporting not only undiagnosed mothers (and fathers) but other adults with additional needs.

As a parent of an autistic child there is no choice but to submit to a whole range of professional involvement. Even without our own autism it is hard. There is a lot of learning, planning and organisation required on a daily basis. We enter a world of acronyms: SEN, SENCO, ASD, SPD, JHS, IEP, EHCP, OT, PT, SALT. We open our lives and our families to scrutiny. We are judged.

And here lies the problem, our interactions with professionals are often judged. We know that how we present ourselves has the potential to change how you assess and what recommendations you make. We know you often think it’s us causing the problems. But are you judging us against the right model? Are you failing to spot that what appears problematic might not be at all? Could you take a moment to consider whether that mother (and, lets be honest, it is nearly always mothers you encounter) might be autistic?

Communication and asking for help

It should not be surprising that autistic mothers struggle to communicate. Autism is fundamentally a social and communication disorder. It is, however, surprising how little thought seems to go into making services and provision supportive of autistic mothers. It is not enough to make a provision or service autism-friendly if the autistic people in most need are unable to access it because of poorly designed systems which are anything but autism-friendly.

Having spent a lifetime maintaining a mask of proficiency, asking for help is tricky. We have to consider who to ask, how to ask, when and where? We fret over being laughed at or dismissed, concerned that expressing a need for help might signify our failure or incompetence. We struggle to find the words. Even when asked directly we may say ‘It’s ok, I’m fine’, when really we want to say ‘It’s not fine, I’m really struggling, but I can’t find the words and I need to get out of here’. Many professionals seem to leave the asking if there’s anything else they can help with until the end of a session. By this time we have usually had enough of the too small or too big room, the bright lights buzzing, the irritating noises beyond the door, the talking. All we are thinking is ‘Get me out of here’.

Phones, phones, phones

Using the phone appears to be a challenge for many autistic people. All of the non-verbal cues which (we have tried to learn) aid communication are stripped away. It’s just a voice. As we use phones less and less in our social lives I think it becomes even harder to communicate in this way. Every time I have discussed phones with other autistic women, we all describe high levels of anxiety around making and receiving phone calls. Screening calls seems to be common, we may silence our phones, use caller display and rely on our answer-phones. If we are expecting an important call, we will wait on tenterhooks, unable to do anything else until that phone call is complete.

Making phone calls is equally problematic. We plan what we need to say and adopt our ‘making a phone call’ persona, reminding ourselves of the conventions of making a phone call. We worry that the call will not be answered by the person we want, and have planned, to speak to. We dread having to explain the purpose of our call to a receptionist or some random person answering the phone. And what if it is an answer-phone? Before we make that call we prepare and rehearse numerous scripts for every conceivable possibility. Unfortunately, when an actual human answers, we are likely to forget the scripts and get in a muddle which sets the tone for the call…

Email is an easy solution

Considering that autism professionals must know how we struggle with verbal communications, it is troubling how few of you willingly offer alternatives. My life, and my ability to advocate for my son, has been immeasurably improved through the use of email. If you do one thing to improve your service, please provide your email address and show willing to communicate in this format. I can think of no reason to withhold email addresses, and am not sure what’s stopping you.

‘Call if you have a problem’

How many times have I heard this. It seems so simple. A professional who wants to help if there is a problem. But it isn’t that simple at all. As well as the general phone problems outlined above, how do we know what sort of problem to call with? Is this problem too minor or beyond the reach of your remit? If I make contact will you still know who we are? How long does this loose ‘call if…’ statement apply. I haven’t seen my son’s diagnosing paediatrician since 2010, she said to call if I had a problem, can I still call her? Probably best not! Explicit, clear, formal guidance for ‘what do do if…’ can be far more helpful in reality than kindly words.

The ‘Basil Fawlty’ effect

The more terrified of a situation I am, the more calm and confident I can look. The more arrogant. The more like a twat.

Lloyd-Williams, R. (2016). Burning Paper Faces. Unpublished.

A final word on communication problems. If you notice us getting more intense and agitated as we struggle to communicate, reminiscent of Basil Fawlty’s hopeless and often extremely uncomfortable interactions with his guests and staff, please spare a thought for our feelings. Be kind, give us space, perhaps postpone to enable us to find a more effective way to communicate.

Executive functioning

Problems with processing, planning and organisation are often overlooked when discussing autism, but seem common among the women I engage with online. In my last post I discussed how I juggled home, work, family and studying, but within and beyond each of those spheres there are a multitude of factors to manage. And because we have to work that much harder at the basics of life, and use a large part of our intellectual ability to do what comes easily and instinctively to neurotypical people, we sometimes find we have little left in reserve for day to day administration. This can be a problem.

One of my biggest challenges is responding to requests on time. I am an inveterate postponer. I rarely miss appointments as they are recorded on the calendar (and my partner reminds me). My biggest problem is ‘the letter asking me to phone’. As discussed above, phones are my/our nemesis. The best way to discharge me or my son from a service is to ask me to phone you to prevent said discharge. ‘The letter asking me to phone’ appears to be a way to target those in need of most help, and, I expect it is a useful way to reduce caseloads… Surely, any parent who is genuinely struggling and in need of continuing services will phone? Perhaps not. When I receive these letters I read them, think ‘I will do that tomorrow, and place them on ‘the pile of things which must be dealt with’. The next day, if something hasn’t been put on top of ‘the letter asking me to phone’, I might look, think ‘I must do that before the deadline’ and carry on with my day. The pile grows. Eventually the pile gets too messy and I have a sort through. At this point I find the ‘letter asking me to phone’ and realise it is too late.

My reason for telling you this is that the people who respond to these letters promptly may not be the people most in need of your service or provision. Many of them will be, but please spare a thought for those of us in need of what you provide, who should remain on your caseload, but who missed the deadline. I know that services are over-stretched and perhaps you don’t have time to chase up every letter sent, but you could consider alternative methods of communication. If only you had provided an email address…

Mother blaming

I am sure that everyone has heard of the ‘refrigerator mother’ theory of autism. The one where us cold, distant, emotionless mothers cause our children to retreat into their own worlds? Whilst there is no evidence to suggest that parenting causes autism, the ‘refrigerator mother’ legacy continues to impact on us today. Numerous mothers of autistic children are being sent on generic parenting courses and being subjected to intrusive, and often inappropriate, family therapy, and worse, because professionals are missing the obvious. That there is a reasonable probability that one or both parents of an autistic child are also on the autistic spectrum.

One of the first books I read after my son was diagnosed was Mike Stanton’s ‘Learning to Live with High Functioning Autism’. It is an excellent book to instil confidence in parents of newly diagnosed children. In it he shares a profile which many mothers of autistic children seeking diagnosis and ‘treatment’/provision might fit. I reproduce it, with his comments in brackets, here:

Are often upper class, well-educated persons (articulate, educated parents are often the best at obtaining services from a system that is not too user friendly).

Remain uncharacteristically calm in view of the victim’s perplexing medical symptoms (we all know that stress makes our children worse).

Welcome medical tests that are painful to the child (only if they are necessary).

Praise medical staff excessively (only the good ones that understand autism!).

Appear to be very knowledgeable about the victim’s illness (we have to be knowledgeable about our children as not too many other people are).

Have some medical education, either formal or through self-initiated study or experience (I have had to teach myself some basic medical stuff in order to evaluate conflicting theories and therapies for autism).

Might have a history of the same illness as the victim (there is a genetic element to autism).

Typically shelter victim from outside activities, such as school or play with other children (I have withdrawn my son from school to protect his mental health. Many parents become home educators because the schools cannot cope with their children).

Allow only selected persons close to their children (yes, the autism friendly ones).

Maintain a high degree of attentiveness to the victim (some people with autism benefit from 24-hour provision, seven days a week. Most of us are papering over the cracks in available provision).

Seem to find emotional satisfaction when the child is hospitalised, because of the staff’s praise of their apparent ability to be a superior caregiver (so, we respond well when professionals praise our parenting ability? There’s a novelty!).

Stanton, M. (2000). Learning to Live with High Functioning Autism: A Parent’s Guide for Professionals. London: Jessica Kingsley Publishers.

The use of the word victim provides us with a clue. This list is from an FBI profile of Munchausen’s Syndrome by Proxy offenders (MBP; now known clinically as Factitious Disorder imposed on another). Is it any wonder that we are eyed with suspicion? It is easy to see that when you take this profile and then factor in a mother who is autistic, particularly if she is not diagnosed, how communication and behaviours could be dramatically, and potentially catastrophically, misinterpreted. Being accused of exaggerating and falsifying reported behaviours is not that uncommon among parents of all additional needs. If you are an autistic mother, with communication difficulties, perhaps some odd mannerisms, struggling with eye contact (often mistakenly seen as a sign of dishonesty in neurotypical people) and maybe not very organised, the chance of you being blamed for your child’s problems are greater. It may be implied that a mother is presenting with a Factitious Disorder, faking her child’s symptoms to serve her own needs, to access services or for financial gain. In extreme cases, children have been removed from their families on this premise. A report produced by Autism Women Matter highlights the consequences for autistic children and their families when professionals fail to consider or recognise that mothers can be autistic too.

Final thoughts

Factitious Disorder (MBP) is an extreme example, but with the potential for devastating consequences. I would suggest that if you are a professional working with a family with an autistic child or children, and you have concerns that the mother is behaving oddly, don’t jump to a mother blaming conclusion, remind yourself that the ‘refrigerator mother’ theory has been de-bunked, take a moment to consider that she may be autistic too. Think about how you can improve communication, because, ultimately, all professional relationships are built on communication.

Remind yourself that autistic mothers are probably at their most vulnerable before they are diagnosed. Some mothers might be horrified at the thought that they are autistic, so careful thought will be needed to ensure understanding and meeting of needs whilst respecting her privacy. Autistic mothers are perhaps less likely to perform stereotypical gender roles which, sadly, still raises eyebrows and elicits judgements about our mothering. Without a diagnosis we are at risk of being misunderstood and misinterpreted, as well as misunderstanding and misinterpreting you. With or without a diagnosis we need you to believe, respect and support us. Most of us are doing the best we can.

Many thanks to Rhi for permission to quote from her, as yet, unpublished novel.

If you’d like to leave a comment or press a button and you can’t see how, try pressing the little circle below.