Encouraging and developing self-advocacy in our children and why the language we use matters

Image shows the sea in the background, with a close up seagull to the right with its beak wide open, below the beak and centred on the image white text reads 'How to talk so kids will learn how to speak up for themselves'

I really, really, really, don’t like the term ‘special needs’. I don’t particularly like the term ‘special educational needs’ much either, and can get a bit twitchy when the acronyms are used as prefixes, for example ‘SN child’ or ‘SEN child’. Urgh, it’s the ‘special’ bit I think. Scotland uses ‘additional support needs’ which grates less, and additional feels more neutral than special, but ASN is phonetically a bit too close to the old ESN acronym for ‘educationally sub-normal’, which was particularly awful.

‘Special needs’ is often used as a way to avoid using the words disabled and disability when describing, err, disabled children. Referring to adults as having, or being (WTF), ‘special needs’ seems reserved for those with learning/intellectual disabilities, when it’s typically used to pity and infantilise. The way that ‘special’ has become used as a way to insult and demean suggests to me it’s time for a re-think.

I’m aware that ‘special needs’ and ‘special educational needs’ are also used to describe children who aren’t disabled. It’s probably helpful to have an umbrella term for both transient and enduring support needs, particularly in schools. I think my preference would simply be ‘additional needs’ and/or ‘additional educational needs’. Both seem more accurate and less loaded and possibly harder to corrupt into terms of abuse. Maybe.

But, what bothers me most is that the language we use to describe disabled children, and to explain disability and support to disabled children, can make developing self-awareness and self-advocacy harder. I know that not all disabled children will be able to advocate for themselves, but for those that will, or those who might, I have some suggestions:

Use words that they’ll use as adults

Think about the words that adult services and adult self-advocates use. My son was diagnosed with Asperger Syndrome when he was 6 years old, but we’ve interchangeably used Aspergers, autism, autistic and autism spectrum/autistic spectrum. I’d like to say this was a brilliant bit of forward-thinking, but it wasn’t, it was purely accidental and largely resulted from my own dithering around the person-first language I’d been trained in and the identity-first language that felt more personal and powerful. Alongside using the word disabled, and other terms that are specific to what disables him, he’s developed a broad and varied vocabulary, not just to choose for himself, but so that he isn’t stymied when he encounters someone who uses different terms.

My hope is that as he approaches adulthood he is reasonably well-equipped to engage with both professionals/service providers and with other autistic and disabled advocates and activists. This would be so much harder if he’d only heard us describe him as ‘being special’, having ‘special needs’ or if, like some parents, we’d never even told him his diagnosis.

Don’t minimise or rely on cutesy words

Words like autism and disability continue to scare some parents. It’s understandable given that the discourse of child development uses words and phrases like ‘risk’ and ‘red flag’ (and delay, disorder and failure) to describe and highlight anomalies (I view anomalies as a neutral term, different not less and all that). Parents, teachers and clinicians often skirt around language, avoiding those apparently scary words, and try to use what’s seen as more child-friendly language to describe children. For example (and this is not exhaustive!):

Aspie

Autie

Fidgety

Shy

Special

Highly sensitive

Indigo child

Twice exceptional

Sensitive

Quirky

Different

Fussy

Spectrummy

Wriggly

Slow

It’s not that we should never use these words, I just think they shouldn’t be the only words we use. It’s a bit like teaching children anatomical terms for their bodies, we need to provide children with the correct terms to describe themselves as well as their bodies.

(Also, try to avoid using words which suggest naughtiness or nastiness, even if you think they can’t hear or understand you)

Model advocacy

Try not to hide what you do to advocate for your child from your child. As far as is possible, involve and explain what you are doing and why, especially as your child gets older. Whether it’s sending an email to school, making an application for extra support, asking for help, or filling in a disability benefit claim, talk about it and involve your child, as one day they might or will need to do these things for themselves. Involving and engaging children in their support and reviews not only reminds professionals that there’s a real child involved, it also gives our children a chance to be a part of the process and learn new and useful skills.

If you are autistic/disabled yourself, or have any support needs, talk to your child about it. I am guilty of unintentionally hiding how hard some things are for me, but I’m trying to be more open and honest about what supports I’ve had that have helped me live, work and study better.

Encourage challenge

Don’t be a doormat, show your child that you will stand up for yours and theirs and other peoples rights. If they spot an injustice help them address it, write an email together or go and complain. Discuss what’s going on in the world and explore the sorts of things ordinary people have done and can do to make a difference.

Don’t force compliance

This is probably my biggest worry with many of the interventions used for autistic children. Whether it’s ABA or social stories or emotional literacy, or whatever school and professionals are offering, we need to check and double check that our children aren’t being taught or conditioned to ignore their own discomfort. Teaching and supporting self-advocacy and autonomy, and especially bodily autonomy, is vital. For more on autonomy, see this post.

Final words

The words we use to describe our children become the words they use to describe themselves. These words and the language we give our children to describe themselves matter. Hopefully, our children will be adults for far longer than they will have been children, so getting the foundations right, giving our children words and language and skills which empower them, which make them feel good about themselves, perhaps which enable them to find their community, and which help them self-advocate, matters.

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.

From ‘autism mom’ to autistic mother

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

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

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

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

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

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

*

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

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

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

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

*

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

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

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

*

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

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

*

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

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

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

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

Guest post: Dear husband, I need your help…

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

Dear Husband,

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

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

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

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

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

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

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

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

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

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

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

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

Lucy x

*name changed to protect privacy

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.

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.