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

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.

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]

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


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

Dear Paula,

 

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

 

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

 

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

 

With regard to the other points you have raised:

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Best wishes,

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

shit I learned at #speakersday

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

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

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

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

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

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

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

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

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

Thank you to everyone involved and everyone who attended.

What a day 🙂

Being me


A year ago I gave a presentation about mothers on the autism spectrum at the National Autistic Society’s Professional Conference. I had never spoken in public before and it seemed to be well received. I wanted to write up my presentation for others to read which resulted in this blog. I chose to blog anonymously because I believed that being open and public could complicate my life in ways that I wasn’t ready for.

I was particularly worried about my colleagues and clients and how they would perceive me as an autistic person. Because, let’s face it, most people don’t understand autism. I also know that the more open I am about being autistic, the harder I find it to mask, and the more my autism shows. Massive structural and cultural changes at work meant I was already struggling, and I wasn’t sure I was strong enough to expose myself while already suffering with high levels of anxiety.

Six weeks ago I resigned from my position, and today is the start of a new chapter in my life. For the last 18 years I have worked in the criminal justice system, in what was the probation service, a profession which always prided itself on strong values and a commitment to justice, but which is now largely privatised and profit-driven. I am in the fortunate position of being able to take a break from working and spend some time finding a way to bring together my skills and interests in a way which is meaningful to me.

My name is Paula Sanchez and I am autistic.