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.

Accessing support as a disabled student 


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

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

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

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

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

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

This was not enough. DSA needed more evidence:

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

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

I replied:

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

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

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

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

And I waited.

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

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

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

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

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

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

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

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 🙂

Visuals for grown ups

[image shows a view ahead of an empty road bordered by tall conifers with a pale green text box with the words ‘Visuals for grown ups’ in black text]
A mainstay of advice for supporting autistic children is the use of ‘visuals’. When I attended the NAS’s Early Bird Plus course after my son was diagnosed there was a strong emphasis on visual supports. Autism advisory services to schools almost always recommend visual timetables, schedules and prompts. There is a massive market in ready made visual supports for autistic children, ranging from elaborate daily planners to portable and wearable symbols.

Like many parents I got sucked into buying a laminator and sticky-backed velcro so I too could produce marvellous visual supports to make life easier. As mentioned in a previous post, I soon realised that for my son, the process of creating the visuals was the most useful element. Talking about what we wanted to achieve proved to be motivating and organising for us both. Although we might refer to the content of that discussion for many months or years to follow, the actual finished (beautifully laminated) product was usually swiftly abandoned.

Despite this, for many autistic children the use of visual supports is helpful, and not just for children who have limited verbal or reading skills. Visuals can also be helpful for keeping teaching and support staff on track, providing a reminder not to make changes without forewarning children who might struggle with the unexpected.

But visual supports aren’t just for children.

Grown ups, of all abilities and with all sorts of support needs, can benefit too.

Chatting with a friend by email at the weekend (my favourite sort of chatting), I suddenly realised how much I rely on visual supports, especially for new experiences. We were discussing our plans for attending an NAS course next week (‘Public speaking for autistic people’) in Wrexham, Wales, many miles from both of us. We are both attending and staying over 2 nights, she travelling by train and bus, me by car. Without having discussed the specifics, it turned out we had both come to be using virtually identical strategies to help relieve some of our anxiety.

We had produced our own visual supports.

Our visuals aren’t laminated or velcroed, and they aren’t stuck on a wall or attached to a carabiner, they’re in our smartphones and tablets. Our visual supports are a series of photos and screenshots of where we are going, the information we’ve been provided about the course, the venue, route plans and timetables, information about hotel bookings and food options.

As the event draws closer I’m spending more and more time on Trip Advisor poring over the photos of the hotel, the car park, reception desk and possible room layouts. Within the next few days I will start doing the same with google maps, satellite images and street view, and will probably take more screenshots to add to my visual security blanket.

All of this takes time, but nobody sees me hard at work, quietly preparing my supports, carefully erecting my scaffold, getting myself ready to do a new thing. One of the best things about chatting with other autistic people is finding out they do these things too 🙂

‘Fine’

Masking and why it’s so hard to ask for help


Struggling to ask for help, being unable to express our needs for support and adjustments, and even accepting help and support when offered, can be extremely difficult and often debilitating for many autistic people. Recognising a need and then finding a way to express it to another person requires a complex set of cognitive, emotional and communication skills.

I’ve been aware of this in relation to my son for many years. It’s only more recently I’ve been able to recognise it within my own life. It is crucial that the people we deal with – our children’s teachers, carers, doctors and therapists; our own employers, teachers, colleagues, friends and family – understand that we might need support, even when we don’t ask for it or realise we are in need of it.

Masking, the conscious or subconscious act of presenting as ‘fine’ when we are not, can mean that we miss out on the support we need. It is often when we are most in need of support that we are least able to communicate our needs. The effort of maintaining the mask uses up all our resources, and the fear of collapse or meltdown in public, at work or school, strengthens our resolve to hold it together.

We mask and hide our difficulties for many reasons. Unmasking and revealing ourselves can leave us vulnerable, highlighting our differences and how fragile we are. If we are able to get the right support and be able to drop the mask our lives are improved. But effective masking means other people don’t recognise we need help and support, and without help and support we can’t lose the mask.

As a parent I have experienced the impact of lack of support for a masking child. As my son progressed through primary school he slowly became more adept at holding himself together and hiding his struggles and difficulties during the school day, resulting in massive meltdowns at home. Because school couldn’t see the problem it didn’t exist. Because he was unable to recognise or articulate problems he didn’t always get the support he needed.

I watched through the classroom window one day just before home time, in the final year of primary school. The class teacher and two teaching assistants were in the classroom. My son was pacing, holding his hands in fists with his arms stiff, his facial expression blank and rigid. He was obviously anxious (as the post-school meltdown proved) but they didn’t see it. I guess that if they’d asked him if he was ok he would have said he was.

A big problem has always been that my son’s verbal abilities and extensive vocabulary make it hard for many people to comprehend that he cannot verbally articulate his needs. Spoken language is just one element in effective communication. Good speech does not necessarily equate to good communication.

It is this discordance, between apparent verbal acuity and poor communication, which causes both me and my son the biggest problems in getting the support we need. Other people assume that our intellect and our vocabularies mean we can say how we feel and what we need. People accept our words, our ‘I’m fine’, as true and accurate, after all, we are notoriously honest, aren’t we?

Luckily, my son has had me, his dad and some excellent professionals along the way able to advocate for him. He is now in a school who believe me when I tell them how he really feels and what he needs, even when he shows no signs of distress at school. They recognise that how he presents and what he says might not reflect how he feels and what he needs.

As a seemingly competent autistic adult, I don’t have an advocate to help me get the support I need. I have to do it myself. When someone asks me how I am, my knee-jerk response is always to reply ‘fine’, even though I am mostly not fine. This is for several reasons:

  • I can’t find the words to effectively express how I feel.
  • I can find the words but I am worried that what I say might be misinterpreted by a neurotypical person.
  • I’m not always very good at filtering my thoughts and can easily come across as rude or aggressive.
  • I worry that my lack of expression and atypical non-verbal communication will counter the extent or urgency of my needs.
  • I worry that I won’t be believed. After all, I look fine, this thing isn’t bothering anyone else.
  • I worry that the thing which is making me not fine will be considered trivial and will be laughed at or not taken seriously.
  • I worry that if I start to say how I really feel I might make myself come across as awkward, unpleasant or too critical.
  • I worry that it will open the floodgates, resulting in losing control by crying or melting down.

And what if nobody asks how I am? If people assume I am fine because I look fine, how do I tell them I am not fine at all?

My health is something which is not fine. I have not visited my GP in years (the last time was by ambulance), despite a number of health concerns, because I cannot find a way to open the discussion. I avoid phoning to book an appointment because of my anxiety around making phone calls.

I do attend the dentist regularly because the check-up schedule means I don’t have to express or articulate my needs, I attend, the dentist asks direct and specific questions and acts on any problems. I can book a dentist appointment while I am there (in dentist mode), and choose a time and day which suits me and will cause the least anxiety. It would help if regular medical check-ups, like dental check-ups, were standard.

Work is perhaps the prime setting for masking as an adult. I have done it for years and, as previous posts have shown, it’s a hard habit to break. After many occasions when I have answered ‘fine’ in supervision sessions with my boss, even when I am not fine, I now try to use email to express my needs. I still go through all the worries I listed above, but I have learned to send the email anyway. I am much better at expressing myself in writing than in speech and I need to find ways to use this more effectively (in fact, I might even write to my GP!).

In contrast, I had an experience earlier this year which, though I didn’t realise at the time, was a perfect example of pro-active support. I was taking part in an event which was completely out of my comfort zone and realm of experience. I did not meet the woman who organised my participation until the event. Before and throughout the event she anticipated what I might find hard and supported me in a multitude of ways.

I’ve heard it argued that having support increases dependence. This is particularly the case with children who have 1-1 support at school. It’s commonly claimed that it reduces independence, providing a useful argument to cut support and reduce funding. When I look back on the event where I had that support, I realise that being supported didn’t restrict me, it empowered and enabled me.

Having someone supportive, to check in with, to keep an eye out for me, to mediate interactions and act as a guide, enabled me to do a big scary thing. What made a difference was not having to ask, just having someone who ‘got it’. This is what is missing for many of us autistic adults in our day to day lives, people around us who understand enough, who can see beyond the ‘fine’ response, to smooth our paths and help us negotiate obstacles.

With support we can do amazing things.

Thanks to Saskia.

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.