Book review: Autism mothers speak out

Apologies, blog followers, I’ve lost my blogging mojo, but it doesn’t mean I’m not writing!

Here is an extract and link for you to read my first journal piece, a book review published in Disability and Society.

Autism Mothers Speak Out is an anthology of accounts by mothers of autistic children, now adults, born between the mid 1960s and late 1990s across the world. The purpose of the book is both to challenge the ‘refrigerator mother’ theory of autism, the notion that autism can be caused by bad mothering, and to showcase the advocacy work of mothers. The introduction, written by one of the co-editors, Maggi Golding, an educational consultant in South Africa, outlines changes in perceptions of autism since her first encounter with an autistic child in 1957. As a former teacher in a psychiatric children’s hospital from the late 1950s, she describes an incongruence between the dominant psychoanalytic theories and treatments based on ‘mother blame’, and the committed and devoted mothers she encountered. Fellow co-editor, Jill Stacey, President of the World Autism Organisation and one of the founders of Autism South Africa, contributes a chapter to this book…

To read the rest of this review please click here:

Open access link to book review of ‘Autism mothers speak out’

PDA & Parenting

A critical-insider perspective on PDA and parenting

This post is based on a presentation I gave at the PARC event ‘Critical Perspectives on Pathological Demand Avoidance’ on Tuesday 15 May 2018. This is very much a walkthrough of the presentation, using a combination of material from the slides, in text and image form, and supplementary narrative where needed.

Please note that this is a long post, but there is a lot to say! A summary will shortly be available on the PARC website.

Both me and my son believe we would meet the criteria for PDA, yet we do not identify as PDAers. I recognise us both in accounts by and about PDAers, in programmes like ‘Born Naughty’, or as described on social media by parents and PDAers themselves, but we would both describe ourselves as ‘just’ autistic. I hope to write about my own ‘demand avoidance’ in a future post. I will not be describing in any detail how my son is PDAish because that is his story to tell, but there are times when I cannot tell my story without reference to him, and he has consented to this. I understand why parents need to talk about their children, because I know how isolating our situations can be, and how we need to learn from each other to be the best parents we can be. I would just urge caution, use anonymous accounts, delete your posting histories, use pseudonyms wherever possible.

Why am I talking about PDA parenting?

I have spent around 10 years hanging out and sharing ideas and support in online forums, with a particular interest in children and young people who exhibit demand avoidant, aggressive and violent behaviours, and I have around 10 years’ experience using PDA strategies and techniques as a parent.

I have over 20 years’ experience supporting often vulnerable adults, including 18 years’ probation work with adults in the criminal justice system, many of whom were almost certainly undiagnosed autistics, including those with a PDA-type profile. Very few had formal diagnoses. As a result, I have considerable experience supporting a wide variety of people who exhibit what is often called ‘challenging behaviour’.

I also have a personal and academic interest in the discourse of ‘mother-blame’ and I have noticed how mothers of PDA-type children often experience considerable judgement and intrusion due to poor understanding of autism by professionals.

I recognise PDA as a ‘profile of autism’ (I will come back to ‘profiles’ later) and I am concerned that critique of PDA could harm PDAers and parents of PDAers, by supporting discourses centred on behavioural problems, bad parenting and mother-blame.

My aim for the presentation was to explore and ponder the tensions between my experience and observations, including the usefulness of PDA for me as a parent, and the clinical and academic construct of PDA. In essence, I am seeking to balance my pragmatic use of PDA as a signpost and shorthand for me as a parent, with my ideological and theoretical concerns about PDA for me as a fledgling academic.

Aut-o-biography

  • My son was diagnosed age 6 under ICD-10 with Asperger’s Syndrome.
  • I was diagnosed age 46 under DSM5 with Autism Spectrum Disorder, having received a ‘non-clinical diagnosis’ the year before to evidence my need for workplace adjustments.
  • I had suspected for both of us since he was 2, when, at his 2 year check the health visitor recommended I read Simon Baron-Cohen’s ‘The Essential Difference’ (lol).
  • He was initially referred for an SEN assessment at 3, for an Educational Psychologist assessment at 4 and then for autism assessment at 5, largely as a result of escalating behaviour that ‘looked like’ bad parenting.

We both have a similar ‘profile’:

  • Sensory problems
  • Masking/camouflaging
  • Anxiety
  • Demand avoidance…

My cognitive dissonance

PDA was not well known when my son was younger and Newson’s original PDA criteria included ‘passive early history’ and ’language delay’ which did not appear to ‘fit’ my son.

Despite my son exhibiting all other PDA characteristics, this stopped me describing him as having PDA, yet:

  • He presented with extreme demand avoidance and a PDA-type ‘behaviour profile’.
  • PDA techniques were highly effective.
  • My main support network was other parents of PDA-type children.

PDA is often confusingly described as both different to autism and as an ASD. As I consider autism and ASD to be synonymous, this does not make sense to me.

In 2016 Phil Christie (at the National Autistic Society’s Professionals Conference) said that the above 2 criteria (passive early history and language delay) were no longer considered essential criteria, and this got me thinking…

Can someone meet both a PDA and an AS profile of autism?

If I was to describe my son, or even myself using clinical, diagnostic terms, it might look something like this:

But, now look at the next 2 tables:

That is the same child (or the same adult) showing a perfect combination of 2 supposedly discrete autism profiles.

My experience and observations indicate that a more obviously- (stereotypically-) presenting Asperger-profile autistic child is likely to be diagnosed easier and quicker than a less obviously- (stereotypically-) presenting PDA-profile autistic child. My son was referred before his more PDA-profile type observable behaviours became more pronounced than his Asperger-profile type observable behaviours. This meant that identifying my son’s autism was fairly straightforward as he appeared to present with a textbook Asperger-profile of autism. We were lucky, and had we delayed, diagnosis might not have been so easy…

What is a typical path to a PDA diagnosis?

Sense of difference about the child:

  • Often an early suspicion of developmental delays but nothing significant.
  • Often skirting along fringes of typical development.

Escalating ‘behaviour problems’:

  • Which can look like ‘bad parenting’.
  • Which are often not consistent across home, school and other settings.

Usual parenting strategies don’t work:

  • Parents have often worked through a series of parenting guides and often attended parenting classes.
  • Parents might have got stuck in a vicious cycle of escalating ‘behaviour’ and sanctions/consequences.

Ask for help:

  • First line help often means more parenting classes and advice to strictly follow reward/punishment methods.
  • When the suggested strategies and approach does not work, parents are blamed for not being consistent, or not doing it properly.

Mother blame:

  • Parent blaming is almost always targeted at mums (for a range of often contradictory reasons see my previous blog post on the irony of parent-blaming).
  • Attachment theory is often used incorrectly to further lay blame on mums, often resulting in ‘family therapy’ (often run by underqualified and inexperienced staff using poorly evidenced and inappropriate techniques).

Autism assessment:

  • Along the way it seems not uncommon for the family to encounter a ‘renegade’ professional who sees something in the child that looks like autism even though nobody else can see it, and this results in a referral for assessment.
  • Initial autism assessment often indicates a failure to meet threshold and a conclusion of ‘autistic traits’ or ‘social and behavioural difficulties’ or non-specified ‘anxiety’.

Stumble on PDA:

  • By this stage parents (usually mums) have started researching and come across descriptions of PDA.
  • Parents (usually mums) voraciously read about PDA and start to engage with other PDA parents.

Find support in PDA community:

  • Parents (usually mums) find others like them and start to learn new, better, and considerably less stressful and anxiety-provoking ways to support their children.
  • Parents start to feel heard and validated, realising that they might have been right all along, and that they are probably not bad parents.

Find sympathetic clinician who can recognise ‘subtleties’:

  • Through recommendations, children are often taken for private assessments with clinical diagnostic providers who are known to be able to see beyond stereotypes and to see the often more subtle PDA presentation of autism.
  • This does mean parents are ‘diagnosis shopping’, it is inevitable that clinical expertise will vary and many clinicians across all disciplines have specialist areas of interest, for example, the highly reputable Lorna Wing Centre is often recommended for assessment of girls and women.

What are ‘PDA strategies/interventions?

PDA adjustments are built around reducing demands and reducing the stress and anxiety which results in ‘demand avoidance’, and includes things like:

  • Framing demands carefully
  • Using indirect demands
  • Explaining reasoning
  • Collaboration
  • Negotiation
  • Using humour and novelty
  • Supporting sensory needs
  • Choosing ‘battles’ carefully
  • Allowing initiative
  • Offering choices

But PDA-style parenting and support is about more than ‘behaviour management’…

What does good PDA-style parenting and support look like?

Reducing anxiety:

  • Ending the vicious cycle of increasing demands and increasing anxiety.

Adjusting expectations and environment:

  • Ensuring sensory and other needs are met.

Teach and model problem-solving skills:

  • Equipping and supporting children with thinking and communicating skills.

Focus on flexible and adaptable skills that will last a lifetime:

  • Reducing or removing time spent on learning transient skills.

Support autonomy and self-advocacy:

  • Encouraging children to be assertive and empowered.

It is my view that this set of aims should be the foundation for any autistic child, or indeed for all children.

How did PDA suddenly get so popular?

Online resources and forums:

  • Including specialist (PDA Contact Group and The PDA Resource) and non-specialist (Facebook groups, Netmums and Mumsnet).
  • Around 2010ish PDA became much more widely talked about and this had a snowball effect.

Backlash against dominant interventions:

  • Around 10 years ago the main interventions being discussed among parents of younger autistic/possibly autistic children were ABA, TEACHH (including via the NAS Early Bird training) and Bio-medical (eg Tinsley House and Sunderland Protocol).
  • Many parents of PDA-type children tried these, to varying degrees, and found them ineffective, and often found they made things worse, so parents started to look for other ways for their seemingly ‘non-compliant’ autistic/possibly autistic children.
  • Many parents, me included, resisted the normalisation and cure narratives which dominated much of the autism parenting world, and wanted to find ways to support our children with more flexibility.

Increased autism ‘awareness’:

  • The rise of compulsory autism training across the teaching, clinical and broader public sector contributed to many professionals thinking they understood autism.
  • This training was (and indeed often still is) based on the idea of autistic people as ‘other’ (such courses are rife with ‘they do this’ and ‘they do that’), and is almost always based on a medical, deficit model of autism, often, in my view, resulting in more rigid stereotypes and less flexible thinking about autism among those who attend…
  • Such training often provides a narrow, limited and limiting toolkit of strategies and interventions, and this can hinder the flexibility and creativity of approach needed by many PDA-type children (and other autistic children too).

But was PDA really a new profile?

Back to the 1940s

I was somewhat surprised when I finally read Uta Frith’s 1991 translation of Hans Asperger’s 1944 paper, and that 3 out of 4 of the case studies he presents in some detail, described behaviours that now might be seen as evidence of PDA-type autism.

These are the extracts I used in the presentation, and there is more in a similar vein, but I urge you to read the case studies for yourself and see what you think:

… the conduct disorders were particularly gross when demands were made on him … when one tried to give him something to do or to teach something … it required great skill to make him join some PE or work even for a short while … it was particularly in these situations that he would start jumping, hitting, climbing … or some stereotyped sing-song.” (Fritz V.)

“… he was repeating the second year because he had failed in all the subjects. The teachers believed that he ‘could if only he wanted to’ … he made surprisingly clever remarks of a maturity way beyond his age … he often refused to co-operate, sometimes using bad language … ‘this is far too stupid for me’ … little things drove him to senseless fury … extremely sensitive to teasing … an inveterate liar … told long fantastic stories* …” (Harro L.)

“… reported to have been a very difficult toddler … unable to cope with the ordinary demands of everyday life … he could be very naughty and would not do as he was told … it was impossible to go to a park with him, as he would instantly get embroiled in fighting … he liked to tell fantastic stories … he had a strong tendency to argue with everybody and to reprimand them … he made life hard for himself by his awkwardness and endless hesitations.” (Ernst K.)

Fast forward to the 1980s

In Lorna Wing’s 1981 paper she describes ‘Asperger’s Syndrome’ which was very much based on then contemporary understanding of autism and Asperger’s case studies, but she removed 2 interesting elements from Asperger’s analysis:

  • The possibility for imaginative play.
  • The ability to be original and creative.

In Uta Frith’s 1991 footnotes to Asperger’s paper she too seemed to struggle with some of Asperger’s observations:

  • Sceptical of ‘fantastic stories’ and imaginative thinking.
  • ‘… the claim that autistic children have a special gift for art appreciation is very surprising’.
  • ‘… little evidence that autistic children have the same sort of fantasy life as normally developing children’.

Elizabeth Newson, building on her 1970s/80s clinical work, and referred to in her 2003 paper, defined PDA as distinct from ‘classic autism’ and ‘Asperger Syndrome’ noting:

  • An equal sex ratio.
  • Demand avoidance using social manipulation as a key criteria.

What PDA did

  • PDA provided an easy shorthand to help us help our children.
  • Especially when the standard interventions did not work.
  • It gave us ‘permission’ to go off-piste with strategies and interventions.
  • It legitimised what we often already knew worked for our children.
  • It enabled the breaking of cycles of escalating behavioural interventions
  • Improving the lives of many children and families.
  • It helped us find peer support.
  • The nature of our children’s ‘behaviour’ can leave us extremely isolated.
  • It enabled autistic children who did not fit stereotypes to get an autism diagnosis.

Do we need a PDA profile of autism?

  • Autism profiles do not stand up to empirical testing.
  • Profiles can perpetuate stereotypes.
  • Profiles can be divisive.
  • Profiles can cause confusion.
  • But, profiles can also be useful:
    • To highlight under-represented groups eg girls and women.
    • To reach under-represented groups.
    • To challenge narrow views of autism.
    • They can support and affirm identity.

Why PDA matters to PDAers/PDA parents

Validation:

  • PDA recognition often follows years of failing to secure an autism diagnosis.

Identity:

  • PDAers report feeling different to other autistic people.

Representation:

  • PDA experience under-represented/marginalised in autism literature/resources.

Isolation:

  • PDAers/PDA parents can feel alienated from autism/autistic community.

Investment:

  • PDAers/PDA parents have an emotional (and financial?) investment in PDA.

So, what’s my problem with PDA then?

The name is awful:

  • Pathological can mean disease-state, extreme or compulsive/obsessive and, as well as the negative connotations and potential for stigma, I am just not sure how such a narrowly-defined term reflects the complexity and nuance of PDA-type autistic people.

It cannot be simultaneously an autism and a not-autism:

  • Over and over and over again I keep seeing PDA being presented as an autism spectrum disorder but ‘not like normal autism’ and I want to shout, ‘THERE IS NO SUCH THING AS NORMAL AUTISM’.
  • PDA is presented as distinct from ‘Classic Autism and Asperger’s Syndrome’ when we already have research that says these are not distinct conditions.
  • On a theoretical level the reliance on Newson’s ASD tryptic (CA – PDA – AS) presents a false dichotomy for PDA, ie that it is different to CA/AS, and we now know that the ASD sub-types are not stable categories.

Perpetuates stereotyped/outdated notion of non-PDA autism:

  • PDA literature often describes ‘normal autistics’ as having less empathy, being less creative, less imaginative and more rigid, more restrictive and more serious and literal than PDAers.
  • The problem is that our understanding of autism has moved on considerably since Newson first theorised PDA, and we now recognise how empathic, creative, imaginative and social autistics across the spectrum can be.

No empirical evidence that PDA ‘demand avoidance’ is different from autistic ‘demand avoidance’ or non-autistic ‘demand avoidance’:

  • Every single feature, trait, sign, symptom, whatever we call it, of autism, is present across the entire human population.
  • Autism ‘traits’ and PDA ‘traits’ are fundamentally human traits. Just as no feature of autism is unique to autistic people, I do not believe that demand avoidance is unique to PDAers.

PDA strategies/interventions are not only useful to PDAers:

  • It is often suggested that PDAers are a distinct group because ‘normal autism strategies and interventions’ don’t work, and again I want to shout, ‘BUT THEY DON’T WORK FOR MOST OTHER AUTISTIC PEOPLE EITHER’.
  • PDA strategies are not unique to PDA, they are built on therapeutic methods which are well established and have broad application. We need to move away from this exclusive and silo thinking.

Inadequate recognition of fluctuating ‘demand avoidance’:

  • I have heard some PDA supporters suggest that if a child (adult) is not demand avoidant all of the time it cannot be PDA.
  • I would suggest that if a child is so anxious that they are demand avoidant all of the time, something seriously needs to change as that child is not being properly supported to reduce their anxiety.

The acceptance of ‘demand avoidance’ (and therefore high levels of anxiety) as a permanent state:

  • Gillberg’s 2015 Faroe Islands study indicates that demand avoidance reduces as children mature.
  • Based on my experience I would suggest that as children develop better communication skills, more self-awareness and improved self-regulation, that they find alternative (more socially acceptable?) ways to express their non-compliance. It is not that the instinctive fear response to perceived and actual demands is fully removed, more that we become more able to self-advocate as we develop more skills.

Whataboutery

If PDA is a distinct profile because of the “extreme” nature of response to anxiety, what about other “extreme” anxiety responses?

  • Selective mutism
  • Eating disorders
  • Self-harm
  • Substance misuse

Would we want:

  • Pathological Selective Mutism Autism Spectrum Disorder?
  • Pathological Eating Disorder Autism Spectrum Disorder?
  • Pathological Self-harming Autism Spectrum Disorder?
  • Pathological Substance-misusing Autism Spectrum Disorder?

What about compliance?

  • Is “extreme” compliance perhaps more pathological and more harmful to autistic children and adults than “extreme” demand avoidance?

I would argue that compliance is one of the greatest risks to autistic children and adults. The ability to say, express or indicate discomfort, displeasure or distress, or even just not wanting to do something for any or no reason at all, is a vital skill.

Conclusion

The dismissal of some of Asperger’s observations perpetuated a narrow view of autism:

  • Excluding more PDAish, social and creative autistics.

Effect of egos and competition on diagnostic categorisation:

  • If Newson had been part of the in-crowd of autism researchers could the PDA-type characteristics of autism have been incorporated into the autism spectrum sooner?
  • Was Newson ahead of her time in recognising, like Asperger before her, that autistic people could be creative and imaginative and that not all autistics crave routine and sameness?

Impact of increased ‘awareness’, stereotypes and prescriptive interventions on non-compliant autistics:

  • It has been suggested that autistics did better before the rise of early interventions (see Michelle Dawson for example), perhaps when parents and teaching staff weren’t restrained by prescriptive autistic training models and packages (from intense ABA to social stories and emotional literacy teaching) and had to be child-focused, creative and experimental.

Dimensional nature of demand avoidance is akin to other ‘extreme’ anxiety responses:

  • Should we actually be talking about ‘extreme’ anxiety?
  • Is demand avoidance just one of many anxiety responses?

The PDA profile of autism, like other profiles and attempts to highlight under-represented groups (eg BAME/women and girls), has some use in the short-term to raise awareness and inform clinicians:

  • Asperger’s Syndrome served a purpose in increasing understanding of the breadth of the autism spectrum, and enabled previously unrecognized autistics to be recognised as autistic, but proved to be an unstable categorisation, resulting in it being absorbed in the broader autism/ASD category.
  • It is my hope that in time the PDA-profile and its criteria will be similarly absorbed and that we will develop better ways of describing the nuance of the different and varying (across people, time and culture) presentations of autism.

PDA techniques and interventions should be more widely used across the autism population to support autonomy and self-advocacy:

  • Done well, the PDA approach supports children to become excellent negotiators, collaborators and activists. That has to be a good thing!

I finished my presentation by asking how do we build bridges across the spectrum?

From ‘autism mom’ to autistic mother

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

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

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

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

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

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

*

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

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

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

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

*

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

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

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

*

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

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

*

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

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

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

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

Guest post: Dear husband, I need your help…

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

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

Dear Husband,

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

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

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

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

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

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

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

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

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

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

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

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

Lucy x

*name changed to protect privacy

The irony of parent-blaming

image shows a head and shoulders from behind, of a person wearing a hooded raincoat and large floppy knitted hat, with the text ‘The irony of parent-blaming’.

There is near universal agreement among autism academics that inadequate parenting does not cause autism, yet the legacy of psychoanalytic, parent-blaming theories of autism remains. The enormous popularity of theories like Kanner’s ‘refrigerator mothers’ and Bettelheim’s frankly bizarre Freudian analyses of motherhood, contributed to this longevity. Even now, with all we know, so often when faced with autistic behaviours, GPs, clinicians, teachers, friends and family seem to find reasons for visible behaviours that place the blame firmly on the parents.

The irony of all this parent-blaming is that there’s no consistency. From my own experience and having spent years interacting with 100s of parents online and in ‘real-life’, it’s clear that, for some people, all that matters is finding the ‘thing’ that the parents are doing ‘wrong’, even when the child is already diagnosed autistic.

My son is an only child so that has been suggested as a reason; but interestingly, my friend whose autistic son is one of 5 has been told it’s because he’s one of many.

I have heard mums told it is because they work, implying the child’s needs are neglected; and also because they don’t work and spend too much time with their child, implying indulgence.

Some are told they are too strict; and others too lax.

Perhaps it’s because both parents work; or perhaps it’s because neither parent works.

It could be that the parents expectations are too high; or too low, who knows?

Maybe it’s because the child doesn’t attend any extra-curricular activities; or maybe they spend too much time doing an activity they love.

It might even be because they never went to nursery; or was it because they were in childcare from an early age?

It’s probably because they’re the youngest, or the oldest, or in the middle.

For every single reason for blame given to a parent, I can bet that another parent has been given the opposite reason for blame.

None of these things cause autism.

But these messages do affect how people view autistic people, both children and adults. These messages suggest that the autism isn’t inherent, that it’s not an integral part of our being, instead suggesting that it’s damage inflicted upon us.

And that’s just nonsense.

Autistic Christmas

I haven’t really written much for a while, it often feels like everything has been said, and I’m not sure what I can add to the ever-growing treasure-trove of autistic writings. But, I remember back when my son was younger and I was looking for strategies to support him, and then when I was struggling and not sure about getting myself assessed, and I remember that what helped me most was reading lots of accounts by autistic people and parents of autistic children (autistic and otherwise). I didn’t always agree with what I read (and still don’t), but reading about the same thing from many different angles is helpful, even if it’s just to confirm that they’re wrong and I’m right…

I know that many others have written about Christmas for autistic people, especially how to help autistic children cope with the festivities and social requirements. From my perspective as a parent of an autistic child, much of what I’ve read has been about how to prepare autistic children to manage the social demands of Christmas. It has been more about moulding the child to fit the expectations and rather less about moulding Christmas to fit the child. It’s also become clear, as an autistic adult, that little thought goes into supporting us with Christmas.

Christmas can be the best time of year for some autistic people, families often do the same things every year with little change, the food is predictable and there is usually more choice and freedom around eating than usual, and for those autistics who like to plan and be in control, it offers an opportunity to show off fabulous organisational and hosting skills (I am not one of those autistics).

For many of us though, and for many of our children, Christmas and the preceding weeks can be incredibly difficult. This post is for us, so here are my tips for an actually autistic happy Christmas.

School children will almost certainly be overwhelmed and exhausted

November and December can be pretty awful for autistic pupils, particularly in primary schools. Predictable timetables are often set aside in favour of impromptu carol singing and rehearsals for Christmas performances. Pupils get increasingly excited and loud as Christmas gets closer. Talking and thinking about parties and presents can be very stressful for our children. Schools might bring in entertainers or have background music playing. The expectations to be happy and good for Father Christmas can be too much to ask of our more anxious children.

Schools can help by providing detailed and up-to-date timetables and supporting our children’s access to quiet spaces if needed. Schools also need to be aware of the sensory impact on our children, whether it’s the hypersensitive child struggling and shutting down with sensory overload, or the hyposensitive child unable to concentrate and hyperactive as a result of the sensory stimulation, or the child with a combination of hyper- and hypo-sensitivities whose reactions seem inexplicable to the teaching staff.

Parents can help by being aware of the challenges, helping prepare children for change but also advocating for their needs to be met. Those of us with children who hold it in all day and then release the tension at home need to think really carefully about what this cycle of suppression and explosion is doing to our children’s mental health and well-being. Don’t feel bad about keeping children off school if it’s all too much. From his second year of primary school I kept my son home every year on the day of the Christmas party, I did not ask permission, I merely informed school that he was unable to attend. The occasional strategic day off can really make a difference and be the difference between enduring and enjoying.

Autistic adults can find workplace social expectations and interactions complicated and anxiety-provoking

Workplaces in December are full of people talking about Christmas, asking about Christmas, distracted by Christmas and planning work parties. We might struggle with the same sensory and social difficulties as our children, but have often developed more sophisticated masking and coping skills which, under these festive pressures, can slip and crack. Up until I started to suspect I was autistic I did my best to join in and do what seemed expected, but slowly over the past decade or so, I became more confident in declining to join in things I knew I would struggle with.

Employers and colleagues could make things easier by not pressuring us to attend social events, or, even worse, making them compulsory. For me, twinkling lights, shiny decorations and Christmas music are a huge distraction when I’m trying to work. I accept that many people enjoy the chance to decorate the workspace and get in the ‘festive spirit’, but some discussion and accommodation would be welcome. This might be as simple as asking where to put things so they aren’t distracting or uncomfortable for the autistic employee. We might need explicit information about any workplace traditions, don’t assume we know just because you do, chances are we don’t.

When autistic people do want to attend parties and events, it would help if they were planned in a way that minimises social, sensory and other distress. It can help to have clear information about any dress-code, ideally there would be no dress-code so those of us who struggle with the sensory impact of clothing aren’t irritated and irritable because of what we are wearing. Provide information about the plans for the event, if the event has several stages, such as drinks at a bar followed by a sit down meal followed by dancing, make it clear it’s ok to pick and choose what to attend. I can manage a sit down meal but would struggle with the rest, if I know when and how things are happening I can plan and build my own coping strategies into the event. Think about the impact of background music, cracker-pulling and party poppers on your autistic employees and colleagues.

To my fellow autistic adults, don’t feel you must do and be like everyone else, it’s quite freeing to say no when you want to say no. I’ve found that pretty much everyone else is so wrapped up in their own Christmas stuff that they’re fairly oblivious to those, like me, who just want to ignore it all.

Family traditions and expectations might need to adapt and change

We don’t have extensive family obligations over Christmas, meaning we have been able to create a set of low-key Christmas traditions that work for us, without unwanted pressures and social demands. Perhaps the most important rule is that, apart from an Advent calendar, Christmas at home does not begin until school term has ended. Throughout December school pupils seem to get increasingly excited and excitable, and my son gets increasingly overwhelmed (and just a tad annoyed!) by it all.

During this period, home needs to be a safe place for him to escape and relax. School is CHRISTMAS CHRISTMAS CHRISTMAS all day long, so we keep home Christmas-free, predictable and ordinary. We put up a tree and decorations the first day of the school holidays, though even that is a concession to me as my son would probably prefer decorations to be displayed just on Christmas Day.

Mostly over Christmas our days are like any other day of the year. On Christmas Day we have breakfast together, which is always toast made under the grill and served in a toast rack, instead of toaster to plate as usual. The rest of the day is quiet and the only noticeable difference is free access to chocolates all day long. Some years ago we discovered that zoos and other attractions are often open on Boxing Day, so while everybody else is doing social and family activities, we take advantage and enjoy the relative peace and emptiness of a zoo, aquarium or, in recent years, the wonderful Eden Project. These places are too busy for us most of the year, but we wrap up warm and it’s a great opportunity to avoid crowds.

We are an autistic family so it’s fairly easy to meet all our needs simultaneously over Christmas. I am aware that for families with a mix of autistic and non-autistic adults and children it’s harder to balance all the needs, but care needs to be taken to ensure that autistic needs are not ignored or forgotten.

It is ok to decline invitations, or for different family members to attend or not attend different events. It might be easier to host so that autistic family members have some control and the safety of their own home and spaces and things. It might be easier to go visit but for a limited time or with one parent leaving earlier with the autistic child. Autistic adults and children need to feel able to use whatever helps them get through situations, and they need allies to support them.

Importantly, finding an event stressful doesn’t necessarily mean we don’t want to be there, we might just need to do that on our terms, with our chosen supports and strategies, and that needs to be ok. Headphones, hoodies, fidgets and screens can help, and they don’t always mean we are withdrawing, they can be exactly what we do need to enable us to participate.

Ultimately, family members need to think about, consider and listen to their autistic relatives. Spacing out seasonal activities, building in downtime and space for interests, picking and choosing what to attend, sticking to plans, encouraging self-advocacy and respecting the views and needs of autistic children and adults, will all go a long way to making Christmas easier and more enjoyable for everyone. And perhaps sometimes it would be good for autistic needs to come first…

Present buying can be tricky

One thing I suspect many of us have in common is an inability to hide our disappointment with a misjudged or unwanted present. We don’t set out to be ungrateful and we don’t want to hurt anyone’s feelings, but we can’t always hold back those initial thoughts and feelings. The more we try to remember to show gratitude the more stressed we get and the more likely we are to get it horribly and rudely wrong.

Surprises can be very difficult for autistic children and adults. I find this really problematic as I do actually like surprises, but only if they are things I have already identified to myself that I want or need, or something unusual and interesting that I would never have thought of but is exactly the sort of thing I would choose for myself. With my partner I manage this by adding lots of possible options to an Amazon wish list and enabling him to choose. I add things throughout the year and try to forget what I’ve added! My partner just provides a list, and has no expectations or desire for surprises or off-piste gifting.

My son did not like surprise presents until last year, but like me, it can be a tricky ask as he is quite particular about what he likes. It has always helped a lot when family ask what to buy and stick to the list, they then get his genuine response and thanks, rather than a somewhat blunt ‘what did you buy me this for?’. Many surprises have been completely ignored, whilst others, like the rare spinosaurus tooth, have become treasured possessions. Some autistic children prefer to know exactly what they are getting, and this can include needing presents left unwrapped. The anticipation and anxiety of not knowing can be too much pressure which takes away the joy. It doesn’t matter if tradition and the ‘rules’ say surprises are good and presents must be wrapped, if doing that causes unnecessary stress.

It’s important to do what works not what is expected when what’s expected is not what works, and I think that’s my message for enjoying Christmas. It doesn’t matter when and how you decorate and put up a tree, it doesn’t matter if your family Christmas ‘dinner’ is posh toast, it doesn’t matter if you stay home and open presents you asked for, and it doesn’t matter if you don’t leave the house for a week, what matters is doing what works and what’s best for you and your family.

Happy Christmas

[image shows a Christmassy sign with the words …Oh…Oh…Oh, which has been inverted from the original which said Ho…Ho…Ho…, which itself is an homage to our own Ho Ho Ho garland which we hang turned around to read Oh Oh Oh for a touch of festive subversion]