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!):
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)
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.
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.
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.
Last night I went to see the first performance of ‘The Duck’, a one-woman play about autism written by Rhi Lloyd-Williams and performed by Lucy Theobald. Flyers described the play as a ‘glimpse beneath the surface of one autistic woman’s world’ which is, of course, an area of great personal and academic interest to me. I ignored the fact that I don’t like theatre performances, with all that proximity to people and enforced sitting still, and went anyway.
I hadn’t planned to write a review and didn’t take notes, but it really was very good and warrants more than a couple of tweets.
Lucy Theobald somehow managed, through Rhi’s incise writing and expert ‘how to be autistic’ coaching, to present something quite different to the composite and generic autistic characters we are so used to seeing. This wasn’t an autistic character developed to showcase autism, the sort of character we often see who shows us their autism through stereotypes and tropes. This was a complex and unique autistic characterisation, literally the ‘one autistic woman’ from the flyer, not a mish-mash creation developed to shoehorn in as much visible autism as possible.
Because autism isn’t really something we can see, autism is very often what people don’t see, particularly in autistic people like The Duck’s protagonist, who have learned to mask and mimic. Somehow, with only a bentwood chair, a bedsheet, some paper and pens, and in less than an hour, Lucy managed to perform not only a life story, but also presented an introduction to some of the key issues of concern to many autistic people.
A recurring theme throughout was the double-empathy problem, how non-autistics have just as much trouble understanding and empathising with autistics as the other way round. Issues of language, identity, sensory and communication differences, labels, diagnosis and the notion of the spectrum were covered. With luck the audience will have been sufficiently challenged and interested to want to go and find out more, as many questions were raised to challenge popular notions of what autism is and isn’t.
My only minor criticisms are that at times the narrative appeared to assume a non-autistic audience, and that a request for flappause (a silent applause of raised waving hands which originated in the Deaf community and is increasingly used at autistic events) instead of the very loud clapping and whooping would have provided an opportunity to highlight the impact of normative social conventions in a very real way.
This was a fast-paced, frenetic, funny, intelligent, occasionally sad, incredibly engaging and informative performance. This is the sort of autistic performance that I want to see, and that I want non-autistics to see.
Massive well done and thank you to Autact Theatre Company for showing what good autistic representation looks like. You’ve set yourself and others a high standard, it will be interesting to see what follows.
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.
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’:
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.
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).
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
Using humour and novelty
Supporting sensory needs
Choosing ‘battles’ carefully
But PDA-style parenting and support is about more than ‘behaviour management’…
What does good PDA-style parenting and support look like?
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
PDA recognition often follows years of failing to secure an autism diagnosis.
PDAers report feeling different to other autistic people.
PDA experience under-represented/marginalised in autism literature/resources.
PDAers/PDA parents can feel alienated from autism/autistic community.
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.
If PDA is a distinct profile because of the “extreme” nature of response to anxiety, what about other “extreme” anxiety responses?
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.
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?
‘Autism mom’ is a term often used by, and to describe, non-autistic mothers of autistic children. It’s a sort of identity, signifying her interest in and connection to autism. ‘Autism moms’ wear jigsaw piece embellished slogans, share memes about their ‘special children’, light it up blue and support Autism Speaks. They want to solve the puzzle of autism and unlock their children from their autistic prisons.
‘Autism moms’ are often passionate about getting the best treatments for their autistic children and keen to measure and compare progress. They love their autistic children and want to cure them of their autism. They spend their savings and pension pots on expensive treatments, some fairly benign, others fairly harmful.
‘Autism moms’ talk of their despair, their fear and the horrors of their daily lives. They understand when fellow ‘autism moms’ murder their own autistic children, because they understand the despair and the the nightmare of autism parenting. They raise funds for research and rejoice at scientific discoveries which suggest a cause for autism, hopeful that cause might lead to cure and prevention.
‘Autism moms’ are often criticised by adult autistic activists for not properly understanding autism. When it is suggested that the path they tread is misguided or dangerous, ‘autism mom’ claims that her child is more severe or more different to the autistic adult, that she knows her child best and has their child’s best interests at heart.
‘Autism moms’ are also criticised for wanting to cure autism, for striving to take away an essential part of their children’s personhood. Autistic activists argue that autism is a neurological variant, not a disease or affliction, and that acceptance and accommodations are what’s needed, not treatments and cures. ‘Autism moms’ are derided for discussing the day to day challenges of parenting their autistic children and told to listen to and be guided by autistic adults.
My introduction to autism began as a (seemingly) non-autistic parent to an autistic child. I was never a full-on ‘autism mom’ as described by the gratuitous stereotype above, but I can relate to the sentiment. I shared the worst and the best of my son’s behaviour and development on social media (albeit anonymously). I rejoiced when he behaved more like, and showed signs of development in line with, his non-autistic peers. I read and read and read to find ways to help him develop his emotional and social skills. I tried to help him ‘fit in’ with his non-autistic peers and shuddered with embarrassment when he showed his autism in public.
I looked for the magic bullet to help him overcome the problems of his autism and be more like his typically developing peers. I wanted his life to be easier and happier.
Parents (almost always) want the best for their children, we certainly don’t want our children to struggle. From the moment they’re born our children are measured, weighed, charted and checked, their progress against developmental norms compared and recorded. As parents we watch for signs of the next steps, celebrating when they make good progress or are ahead of the curve, worrying when we see delays. We see our children among their peers and cannot help but compare. Our children will grow up into a world made for norms. We want to smooth the path. We worry more. We do more. The search for the elusive key becomes all consuming.
I understand why ‘autism moms’ wear themselves out trying to ‘fix’ their autistic children. I understand why they want to identify the causes of autism and prevent more hardships and heartbreak. Parenting an autistic child in a world built upon and for norms is not easy. Lack of understanding, poor educational options, constant battles for provision and support, balancing needs and resources within the family, it is hard and it often feels relentless.
As I meander through this new world, with my newfound autistic identity, I struggle at times to consolidate the different perspectives. On the one hand, I am a parent to a child who has had way more struggles than a child should, and I want to do everything in my power to ameliorate those struggles, whilst on the other hand I want to celebrate his (and my) differences, and glory in the wonder of our neurodivergence.
I listen when autistic adults offer advice to parents of autistic children. I read carefully when autistic adults write articles criticising ‘autism moms’ and their choices. I constantly compare what’s being discussed to my own parenting, wondering if I measure up, am I doing my son a disservice, am I good enough? After a lifetime of never fitting in, I can’t help but wonder where I fit. I still feel as if I have a foot in the warm shallow end of both ‘sides’.
The reality is that it wasn’t working out I’m autistic that influenced my parenting. It was much more that as I became more confident as a parent I became more able to do what my son needed. I no longer felt like I had to perform some idealised version of the ‘good mother’.
I started writing this post nearly 2 years ago and had planned it (rather grandiosely perhaps) as a way to try and bridge the gap between what sometimes feels like the warring factions of ‘autism moms’ and autistic activists. I really struggle when I read accounts by autistic adults who are not parents themselves (for example Temple Grandin’s ‘The Loving Push’ book) giving parenting advice to parents of autistic children. I’m not sure non-parents can ever really understand being a parent any more than non-autistics can ever really understand being autistic.
I also struggle when non-autistic parents of autistic children are told they just need to understand and listen to their child better, as if that’s the magic answer. My autism does not give me some special power to intuitively know how to parent and support other people’s autistic children. I didn’t have all the skills I needed to parent my own child so how can I know what’s best for another child, who is not part of my family?
I know I am not alone as a parent trying to balance preparing my child for a life in a neurotypical-centric world whilst trying to preserve his right to be his own autonomous autistic self. It can be a tricky balance, and I often worry I’m missing something important. I do not agree with many ‘autism moms’ who see ‘normal’ and non-autistic as the ideal to aim and fight for. I do not see compliance with neurotypical expectations as desirable, in fact I see it as antithetical to self-advocacy.
If I can send one message to ‘autism mom’ it’s to encourage and prioritise your child’s autonomy over and above everything else, for this is what will help keep them safe in the future.
For more on autonomy, please read Jamie Knight’s article here:
In this guest post, Katharine Manning writes about diagnosis, disclosure and managing the demands of everyday life, including her return to work.
It’s over 18 months now since I obtained my diagnosis. That has given me some peace – at last – and a basis for making informed choices about my life including how to rearrange it going forward. After spending several months free of work I finally seemed to get my autistic existence into some kind of balance, after quite a few years of feeling out of kilter but not understanding why. The question was though, would it withstand starting work again?
During my time off I’d found ways to head off or quell the autistic ‘overdrive’ that many others experience. But life was gentle, demands were few and time was plentiful. I got properly fit again by taking up running, one of the last things I thought I’d ever want to do but it helped lift me out of a quite unexpected but severe depression. I watched a lot of TV snooker: not everyone’s cup of tea but I find it good for my soul. It also reminds me of quiet, secure, companionable times spent in the company of my now-late grandparents. My marriage is in a better place, no-one in the family had any major health worries after a run of bad fortune and the ‘youths’ (too old now to be described as children) seem happy in their lives. I’d made quite a long sequence of disclosures about my diagnosis; in fact I got quite a good script going which overcame the difficulties of starting my explanation from scratch each time. Most of these went OK and even though a couple didn’t, I mostly managed not to let those bother me. The overall message and developing my altered identity were heading in the right direction.
Sometimes I find I’ve run out of steam for further disclosures, or just don’t make them. With two long-established friends in particular there was an opportunity but I didn’t take it. There was also a newer friendship where I just didn’t want to. It’s good sometimes just to try and ‘pass’ and let people make of me what they will. In fact I’ve recently made my first couple of new friends in many years so maybe have somehow relaxed into myself. One is (probably) autistic herself and there is a strange joy in finding someone from your own tribe. Oddly enough what has also helped is unlearning some of my self-sufficiency, by engaging more with other people through asking them for and offering help and things.
I had hoped that an extended spell free from work would bring about a fairly thorough ‘restoration’. To a limited extent it did but by no means amounting to ‘recovery’. It brought home to me that my functional deficits cut across all domains of my life. Being at home can be as challenging as being at work, just in different ways. About that time I read a post from the Autism Women’s Network about autistic burnout, which seemed to describe my situation perfectly. I felt it also explained why my AS had become more pronounced during the course of my life, which was puzzling me.
So, what conclusion to draw about what to do about work in future? I decided that the answer is to persist … but make it fit more manageably within my life overall. The idea of ‘managing spoons’ is very relevant to this, deciding how best to allocate my limited energy and personal resources. So I made a full and honest disclosure of what my AS means in a work context and entered into a problem-solving dialogue with my prospective line manager about the job I’d applied for and been offered (he received it well). I’ve halved my previous work hours and though the office is quite a long journey from home I’ve decided to try something new, staying away overnight which gives me quiet time and space to regroup mostly free of family pressures.
On days when I cope well, especially in the work sphere, I do still question whether I ‘merit’ this diagnosis. But then come days when I definitely don’t cope well and I’m reminded of – and eternally grateful for – the value of my diagnosis in understanding and managing my life. I recognise also that my ability to cope at work is a hard-earned consequence of doing just that: managing my life as well as others’ expectations.
I’m still not sure to what extent it might be possible for me to ‘recover’ my mental health which has become characterised by chronic anxiety mixed with some recurring depression. I find myself feeling unreasonably agitated when train carriages aren’t as quiet as libraries: not because I think other people shouldn’t talk but because my brain can’t hear conversations without processing them. ‘Brain fog’ or cognitive clouding is becoming a major issue and my ability to cope with that may ultimately determine whether it is realistic for me to continue in work longer term. Decisions about everyday life are also finely balanced: for instance, managing social anxiety by avoiding contact with people risks getting out of practice and further losing confidence. How much worse might AS get for me, particularly as I age? Might anxiety, irritability and isolation win the day or will a sense of humour, patience and self-forgiveness carry me over the further rough ground ahead?
What’s certain is the value of my support team. As well as family and friends, I’ve been lucky enough to have a very helpful GP who is always willing to listen, understand and research the issues I bring her. I’ve also felt well served by my workplace occupational health department and union representative. I’m fortunate that both my local NHS mental health services trust and autism service provider are progressive and in particular through the latter I found an extremely good-hearted specialist therapist who offers support to people with AS on both an individual and group basis. Finally, one of our local universities is doing some highly relevant research on managing anxiety symptoms in people with autism. By contributing to that I’ve been able to further scientific understanding as well as strengthening my own knowledge of the condition.
Last year, the promotional material for a new TV show about autism, then titled ‘How autistic are you?’ resulted in me writing what has become my most viewed blog post, ‘A little bit autistic?’, where I challenged some of the myths encapsulated in the flyers being shared across social media. I was not alone in questioning the premise of the proposed programme, but all I did was rant a bit. Others were more proactive, and thanks to the input and hard work of a bunch of young autistic adults, and now titled ‘Are you autistic?’, the show aired last night.
It was so much better than I expected.
Georgia and Sam, presenting, totally outshone (and, in my opinion, should have usurped) Anna Richardson’s role as ‘neurotypical guide. The young people involved were fabulous in their honesty and humour. I loved the use of speed-dating to demonstrate how autistic women use social masking. What was particularly interesting for me was that I could see the masking but the neurotypical people, who were actually there, could not (highlighting the double empathy problem perhaps).
Georgia and Sam successfully challenged many myths about autism, including the dreadful ‘everyone is a little bit autistic’ and described and showed how the autistic spectrum is not a continuum, but is more like a complex constellation (see featured image above). Seeing Jo and JP get their diagnoses, and their happiness at knowing they’re autistic, was a wonderful contrast to the frequent portrayal of autism as a tragedy (see my last blog for more on diagnosis).
What wasn’t so good?
The robot freaked me out, and I didn’t like the scattered references to ‘living with autism’, and whilst it was great to see so many autistic women in one place (which is always a delight as I described here), some older autistics would have helped represent the lifespan. Apart from the inclusion of JP’s son the overall representation of autistic people was quite narrow, and I’d really rather the ‘cost’ of autism wasn’t compared to the ‘cost’ of cancer.
I was disappointed than none of the academics/clinicians involved were autistic, and would urge non-autistics involved in autism research and diagnosis to share their platforms and boost their autistic peers. I was somewhat amused at Simon Baron-Cohen’s surprise that so many autistic women might still not be diagnosed, and I suggest he gets out of his academic ivory tower a bit more and engages with the autistic population he’s built a career on.
But, overall, it was a bright, positive, occasionally challenging, introduction to what autism can be for some people. We need more representation and it was a start.
It doesn’t quite beat my favourite autism documentary so far, Rosie King’s wonderful ‘My autism and me’, but it comes close.
Bravo Georgia and Sam, and all the other autistic participants. You did good.
Every now and then, in ‘real life’ and in the ‘virtual world’, I encounter people asking, ‘Why did you need a diagnosis?’ or ‘You’ve managed to get this far without a diagnosis, what’s the point now?’, and others confidently stating, ‘I know I’m autistic but there’s no point getting a diagnosis at my age’ or ‘I don’t need a doctor to tell me I’m autistic’. More and more adults are identifying as autistic without pursuing clinical diagnosis, often explaining that autism is not a medical/psychiatric condition, and that clinical diagnosis can be impossible to access and even detrimental for some people. I don’t dispute these claims at all, but I do not, on the whole, think that self-identification is the way forward. Autism does need to be de-pathologised, by not only focusing on deficits and difficulties, but skills and strengths too, and I am in agreement with those who argue for it to be removed from the psychiatric manuals, but we still need a means to identify autism and evidence our support needs.
My experience of diagnosis, both for myself (here and here for example) and my son, has been overwhelmingly positive, and I accept my subjective bias. However, the challenge to the existing clinical diagnostic model does raise important questions and quandaries, and this post is my attempt to explore some of these issues and tensions.
“I sometimes try to imagine an ideal world where all our diverse needs would be met and catered for, and we would not need our differences categorised and labelled. I hear autistic people’s requests for an ‘autism-friendly’ world and think how lovely that would be. Then I remind myself that our needs and supports are infinitely diverse, very often contradictory, and that even if we remove all the ‘labels’, those of us with minority neurotypes would still feel different. How would we understand ourselves and find each other without some concept of our shared neurotype? Without a ‘label’ for ‘my type of brain’ how would I find people like me? How would I understand why I feel the way I do? Would I still feel broken and wrong and alone?” (PS)
Thus, I start from a position of supporting the need for a shared concept of our minority neurotype. In the world that we inhabit today, the clinical label of autism both has meaning and is significantly better than the labels of weird, rude, unfriendly, aloof, inept and freak (and worse) that get applied to many autistic children and adults. Before my son’s diagnosis he was labelled ‘naughty’, ‘thuggish’ and ‘spoilt’, but diagnosis brought new understanding and a different way to interpret his behaviours. If, like me, you have a struggling child, who is academically able and verbally articulate, whilst presenting with what are described as very troublesome behaviours and a number of developmental delays, or, like me, you are seen as strange and awkward and fussy, you are faced with a barrage of judgement and assumptions. An autism diagnosis can liberate us from our own internalising of these judgements and, if we are lucky (and it really should not depend on luck), provide others with a greater understanding of our strengths, differences and support needs.
As part of preparing this blog post, I asked a group of online friends, including women with NHS and private diagnoses, women who have been referred for diagnosis and women not yet sure how to proceed, about their own experiences and thoughts about diagnosis. They will be referred to by initials, either their own or ones they have chosen for this piece, and have been offered full control over the inclusion of their contributions. This is not an academic piece, more a personal commentary enriched by the contributions provided by this wonderful group of friends. None of us can speak for all autistic people, but hopefully what follows will provide some insight and help answer some of the questions sometimes asked.
Why is diagnosis important?
Autism is more than a feeling.
I’m not sure it’s possible to ‘feel autistic’ without having some shared sense of what being autistic feels like, I’m not even sure I do ‘feel autistic’ at all, I just feel like me. It was only by reading other autistic people’s accounts of their own feelings, behaviours and interpretations that I started to realise that how I think, feel and engage with the world is more like other autistic people’s experiences than the non-autistic majority. Without a shared understanding (both as a diagnostic construct and as a social construct) of what autism and being autistic means I would have remained clueless.
“I’ve described my experience of undergoing the ADOS autism diagnostic assessment as the time when I ‘felt’ most autistic, as if it drew out all my inner autism, the ultimate ‘show and tell’. Looking back, I don’t think I was ‘feeling’ autistic, I was just an autistic under pressure, interpreting my own behaviours through my knowledge of how others have described autism.” (PS)
Diagnosis is more than a ‘label’.
The process of diagnosis, the lead up to the final ‘ta-dah you meet the diagnostic criteria’ moment can be as important as the ‘label’ itself. A good diagnostic process will explore strengths as well as weaknesses, will be broad-based to ensure any co-occurring conditions are identified, and will be an empowering experience. Sadly, most diagnostic processes seem to be heavily deficit-focused, narrow in scope, and can reinforce feelings of inadequacy and deficiency. A good diagnosis will go beyond merely naming the autism and will provide evidence of those strengths, needs and possible adjustments. Sometimes we don’t know our own strengths until someone else tells us, we don’t just want confirmation of all the things we ‘fail’ at, we need affirmation and hope too.
It might not be autism.
My experience suggests that most people who think they’re autistic, who have done some research, in particular those parenting autistic children or with other familial links, and who pursue diagnosis, almost always get diagnosed as autistic. But it might not be autism, or it might not be ‘just’ autism, there may be other or co-occurring conditions which might benefit from treatments.
It may help with identifying co-occurring conditions.
Autism does not exist in a vacuum, and it is extremely rare for anyone to ‘just’ be autistic. People are complex beings, but sometimes unpicking and identifying one thing makes it easier to see other things, resulting in improved understanding and enabling more appropriate supports and care/self-care.
To ensure any treatments given are suitable.
Many autistic people describe unusual reactions to medications, and there are therapeutic approaches which may not be suitable. We do not yet know enough about differences in autistic neurology and physiology, but the prevalence of epilepsy, autoimmune and connective-tissue disorders (eg Ehlers Danlos Syndrome) among the autistic population suggests that, if there are autistic tendencies towards unusual drug reactions, we need to know who might be at risk from complications.
Diagnosis may protect us as we age.
We still do not know enough about autism and ageing, but I want it recorded that I am autistic so that if I am subject to neurological tests or placed in residential care, my autistic neurology is taken into account.
Diagnosis can remove doubt and provide clarity.
Like many late-diagnosed autistic people, I found the period of wondering whether I might be autistic incredibly difficult, unsettling and anxiety-provoking. Often our need for ‘proof’, to satisfy ourselves that we are right and that we are indeed autistic, becomes overwhelming and all-encompassing. As parents, the need for a diagnosis for our children can engender the same thoughts and feelings.
“Suspected-but-not-sure was the most stressful time for me … I was suffering with almost daily meltdowns, anxiety etc but felt I couldn’t ask for accommodations or call myself autistic or anything until it was official. Because if I was wrong then I would have lied. And I might not have needed accommodations as much as a boot up the arse.” (RS)
Many of us feel we cannot ask for the help we need without evidence of our autism, the worry that we might be wrong being ever-present.
“I don’t have a diagnosis, but I am on a waiting list. Have been for almost 18 months. I would never say to anyone that I’m autistic. I’ve said to a few … that I might be/it’s been suggested that/I’m waiting for a diagnosis etc. It would feel like lying because I don’t have a diagnosis.” (GP)
Not all autistic people have the self-awareness or cognitive abilities to recognise their own autism. And what about the children?
Seriously, anyone who suggests that we should abandon clinical, medical and psychiatric processes to diagnose autism needs to think about what we replace it with, because we have to have something. It is beyond arrogant to claim that because some autistic people can identify their own autism that this should be considered as an alternative to clinical diagnosis (yes, I have seen it suggested that self-diagnosis is superior to clinical diagnosis). We, as in those of us autistics who can articulate this stuff, need to tread carefully and not throw less able autistics under the bus in our pursuit for de-pathologisation. We need to ensure that we don’t give clinical commissioners a ‘politically correct’, autistic-sanctioned justification for cutting back diagnostic services for children.
Clinical diagnosis can prevent misinterpretation of observed behaviours.
It’s never advisable to make assumptions based just on what we observe. We all have a different set of filters through which we interpret and make sense of the world around us, and this affects how we view what people do, and how other people interpret our observable behaviours. For some of us, the certainty of diagnosis equips us with a set of filters we can hand out to people we know and meet so they can see us through an autistic lens. This not only helps them understand what we do and why we do it, it can also help us feel less awkward and embarrassed when we behave in unexpected or unusual ways.
“I particularly hate shutting down. I’m a calm, compliant, easygoing person and when I shut down I’m an arse and then I’m being an arse who can’t talk. It looks like bad behaviour – it is bad behaviour – and I hate being unable to stop it.” (HA)
Self-diagnosis is not enough when you need help, support and access to services.
Like many, I would not have got adjustments at work or support as a disabled student without a clinical diagnosis. This is often a driving force for adults seeking diagnosis.
(n.b. this can also work the other way, for example, speech and language therapies are often inaccessible once a child is diagnosed autistic…)
“In an ideal world we would adjust things individually for every child at school/person at work etc and then we wouldn’t need diagnoses. We could just do whatever works for the person. But those kind of adjustments/that kind of individualisation costs money, so right now we have the diagnosis barrier. So absolutely essential to have a diagnosis to get any kind of help at all.” (GP)
“I would never question someone who has self-diagnosed but I do desperately want an assessment (and hopefully diagnosis) for myself. I do think it can make a difference psychologically and practically (it’s really hard to get support for autism but even harder without a diagnosis).” (FG)
Support needs aren’t always obvious.
Many, many autistic children and adults hide their difficulties, not always consciously, which means support can be hard to access without clinical evidence that the difficulties exist.
“I fought to get both my boys diagnosed as early as I possibly could despite neither really ‘needing’ any outside support right now because I know how long the process can take and I wanted both to have the diagnosis in place before I needed any official support for them. Because both boys … are very good at masking I feel I need the back-up of the professionals for anyone to take me seriously.” (FG)
Clinical diagnosis provides legitimacy and can be empowering.
Diagnosis has been positive, affirming and freeing for me and many others.
“For me, my diagnosis was a massive relief because it means I can understand who I am…” (HT)
“… I was only diagnosed in … and I am still processing it but actually having a diagnosis has allowed me to give myself permission to fail at things or not cope with them. All my life I have hated not being able to do stuff or cope with day to day life without becoming exhausted and stressed. Now I can say fuck it, there is a reason and that it’s ok. I can give myself space and I can tell others that I need space too, even people who don’t know I have a diagnosis, because I know. I only went for the referral for me!” (RT)
“Knowing it’s likely has in itself made a huge difference … it’s enabled me to realise that some things are just genuinely more difficult. It’s not that I’m lazy or stupid … I’m just different … I still feel fraudulent though. I feel like I really need that medical ‘yes’. A big part of my brain still says ‘what if you are using this as a convenient excuse, what if you are lazy, badly disorganised and a general disaster zone in public?” (WS)
“I needed the confirmation from an expert. Years of doubting myself and believing I was rubbish meant I couldn’t accept for myself that there was a reason for it. Even now I’m struggling to shake off the deep-seated belief that I’m crap, but I have the chance to work it out, which I never could have without a diagnosis.” (HT)
“I wasn’t comfortable with self-diagnosis. I needed it to be definite, clear cut. I also needed a diagnosis for work where I was struggling. It took 18 months from being referred to getting assessed which was a very stressful time … I cried with relief when I was finally diagnosed, I finally had an answer for why I am as I am! Now I’m much kinder to myself, I don’t beat myself up as much, I don’t have meltdowns as often. I managed to move jobs to something less stressful too.” (FA)
“I was self-diagnosed for a while but I felt like a fraud. However sure I was, there was always the worry that actually I was just a twat who couldn’t cope with the demands of daily life. The diagnosis was an enormous relief. So I’ve gone from someone who felt there was definitely no need to look into formal diagnosis to someone who desperately needed to know.” (HA)
Being autistic is more than an identity.
Without a doubt, autism has given me an identity and a sense of belonging I never actually knew I was lacking, but it is more than that, and it isn’t all positive. It has impacted on my life in so many ways, limited me and continues to limit me, and I need to be able to say that. We need to be able to talk about the hard bits of being autistic, to learn from each other and to ensure that we can get support. We need to acknowledge how hard it can be so that people don’t feel like failures when they’re having a tough time, and so that it is absolutely clear that we need supports and adjustments and accommodations.
“I wonder if anyone seeing ASD as an identity is missing the point somehow, because it’s not something you choose, it can be bloody difficult, and I’m not sure it’s something I would knowingly choose for myself or [my children]. As a family we can talk positively about ASD, but it’s alongside acknowledging that it can be very distressing and difficult.” (HT)
“I loathe the phrase ‘identify as’. It offends my love of clear language and efficiency because it doesn’t mean anything. The whole point of diagnosis is that the thing you’re being diagnosed with affects your life in some way negatively and that you get help for it. Taking on an identity is a way of joining a group. They are completely separate things.” (GP)
“… it’s not all positive and happy outcomes, I am really shit at this parenting malarkey, because three (possibly more) autistic people in one house is a fucking nightmare most of the time, with clashing needs left, right, and centre. My only hope to keep things ticking over … is by being permanently chirpy, active and flexible, which I can do for a day or so, then my mental health suffers…” (HT)
I am not saying that self-diagnosed people aren’t autistic…
The chances are that most ‘self-diagnosed’ autistics are indeed autistic.
“I have nothing against self-diagnosis as such, I think if someone has thought about it and researched it as much as I did during that time, the chances are they’re right. But it wasn’t for me, even now I can’t say ‘I’m autistic’ to a professional without clarifying that my diagnosis says Asperger’s.” (RS)
“I don’t have a problem with someone self identifying, and most autistic people I’ve personally met have to go through that stage before they can go on to seek diagnosis – let’s face it, there isn’t the understanding of ASD for anyone to be referred without a battle, unless they are obviously autistic.” (HT)
… but, diagnosis matters.
Hopefully this piece has given some food for thought, feel free to comment and share. Thank you for reading.
Massive thanks to the band of rebels who helped me write this piece.