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’

Review: ‘The Duck’

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

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

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

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

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

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

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

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

Free speech, bridge-building and stuff

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I think I can.

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

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

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

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

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

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

Open letter to playwright Mike Heath and Kibo Productions

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

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

Read the rest: autisticmotherhood.co.uk/

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

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

From ‘autism mom’ to autistic mother

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

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

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

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

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

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

*

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

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

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

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

*

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

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

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

*

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

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

*

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

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

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

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

Guest post: The quest for equilibrium

image shows an out of focus woodland background, with a log and rope bridge in focus in the foreground, overlaid with ‘the quest for equilibrium’ in white text 

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.

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.

Looking back and thinking forward

Parenting, hindsight and independence

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

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

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

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

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

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

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

Don’t waste effort on transient skills

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

Future proof any routines

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

Don’t force your kid to follow the crowd

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

Support self-regulation

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

Respect and encourage bodily autonomy

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

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

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

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]

Performing normal

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

Until we can’t do it any more.

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

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

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

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

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

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

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

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

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

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

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

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

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