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.
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.
Last year, the promotional material for a new TV show about autism, then titled ‘How autistic are you?’ resulted in me writing what has become my most viewed blog post, ‘A little bit autistic?’, where I challenged some of the myths encapsulated in the flyers being shared across social media. I was not alone in questioning the premise of the proposed programme, but all I did was rant a bit. Others were more proactive, and thanks to the input and hard work of a bunch of young autistic adults, and now titled ‘Are you autistic?’, the show aired last night.
It was so much better than I expected.
Georgia and Sam, presenting, totally outshone (and, in my opinion, should have usurped) Anna Richardson’s role as ‘neurotypical guide. The young people involved were fabulous in their honesty and humour. I loved the use of speed-dating to demonstrate how autistic women use social masking. What was particularly interesting for me was that I could see the masking but the neurotypical people, who were actually there, could not (highlighting the double empathy problem perhaps).
Georgia and Sam successfully challenged many myths about autism, including the dreadful ‘everyone is a little bit autistic’ and described and showed how the autistic spectrum is not a continuum, but is more like a complex constellation (see featured image above). Seeing Jo and JP get their diagnoses, and their happiness at knowing they’re autistic, was a wonderful contrast to the frequent portrayal of autism as a tragedy (see my last blog for more on diagnosis).
What wasn’t so good?
The robot freaked me out, and I didn’t like the scattered references to ‘living with autism’, and whilst it was great to see so many autistic women in one place (which is always a delight as I described here), some older autistics would have helped represent the lifespan. Apart from the inclusion of JP’s son the overall representation of autistic people was quite narrow, and I’d really rather the ‘cost’ of autism wasn’t compared to the ‘cost’ of cancer.
I was disappointed than none of the academics/clinicians involved were autistic, and would urge non-autistics involved in autism research and diagnosis to share their platforms and boost their autistic peers. I was somewhat amused at Simon Baron-Cohen’s surprise that so many autistic women might still not be diagnosed, and I suggest he gets out of his academic ivory tower a bit more and engages with the autistic population he’s built a career on.
But, overall, it was a bright, positive, occasionally challenging, introduction to what autism can be for some people. We need more representation and it was a start.
It doesn’t quite beat my favourite autism documentary so far, Rosie King’s wonderful ‘My autism and me’, but it comes close.
Bravo Georgia and Sam, and all the other autistic participants. You did good.
Every now and then, in ‘real life’ and in the ‘virtual world’, I encounter people asking, ‘Why did you need a diagnosis?’ or ‘You’ve managed to get this far without a diagnosis, what’s the point now?’, and others confidently stating, ‘I know I’m autistic but there’s no point getting a diagnosis at my age’ or ‘I don’t need a doctor to tell me I’m autistic’. More and more adults are identifying as autistic without pursuing clinical diagnosis, often explaining that autism is not a medical/psychiatric condition, and that clinical diagnosis can be impossible to access and even detrimental for some people. I don’t dispute these claims at all, but I do not, on the whole, think that self-identification is the way forward. Autism does need to be de-pathologised, by not only focusing on deficits and difficulties, but skills and strengths too, and I am in agreement with those who argue for it to be removed from the psychiatric manuals, but we still need a means to identify autism and evidence our support needs.
My experience of diagnosis, both for myself (here and here for example) and my son, has been overwhelmingly positive, and I accept my subjective bias. However, the challenge to the existing clinical diagnostic model does raise important questions and quandaries, and this post is my attempt to explore some of these issues and tensions.
“I sometimes try to imagine an ideal world where all our diverse needs would be met and catered for, and we would not need our differences categorised and labelled. I hear autistic people’s requests for an ‘autism-friendly’ world and think how lovely that would be. Then I remind myself that our needs and supports are infinitely diverse, very often contradictory, and that even if we remove all the ‘labels’, those of us with minority neurotypes would still feel different. How would we understand ourselves and find each other without some concept of our shared neurotype? Without a ‘label’ for ‘my type of brain’ how would I find people like me? How would I understand why I feel the way I do? Would I still feel broken and wrong and alone?” (PS)
Thus, I start from a position of supporting the need for a shared concept of our minority neurotype. In the world that we inhabit today, the clinical label of autism both has meaning and is significantly better than the labels of weird, rude, unfriendly, aloof, inept and freak (and worse) that get applied to many autistic children and adults. Before my son’s diagnosis he was labelled ‘naughty’, ‘thuggish’ and ‘spoilt’, but diagnosis brought new understanding and a different way to interpret his behaviours. If, like me, you have a struggling child, who is academically able and verbally articulate, whilst presenting with what are described as very troublesome behaviours and a number of developmental delays, or, like me, you are seen as strange and awkward and fussy, you are faced with a barrage of judgement and assumptions. An autism diagnosis can liberate us from our own internalising of these judgements and, if we are lucky (and it really should not depend on luck), provide others with a greater understanding of our strengths, differences and support needs.
As part of preparing this blog post, I asked a group of online friends, including women with NHS and private diagnoses, women who have been referred for diagnosis and women not yet sure how to proceed, about their own experiences and thoughts about diagnosis. They will be referred to by initials, either their own or ones they have chosen for this piece, and have been offered full control over the inclusion of their contributions. This is not an academic piece, more a personal commentary enriched by the contributions provided by this wonderful group of friends. None of us can speak for all autistic people, but hopefully what follows will provide some insight and help answer some of the questions sometimes asked.
Why is diagnosis important?
Autism is more than a feeling.
I’m not sure it’s possible to ‘feel autistic’ without having some shared sense of what being autistic feels like, I’m not even sure I do ‘feel autistic’ at all, I just feel like me. It was only by reading other autistic people’s accounts of their own feelings, behaviours and interpretations that I started to realise that how I think, feel and engage with the world is more like other autistic people’s experiences than the non-autistic majority. Without a shared understanding (both as a diagnostic construct and as a social construct) of what autism and being autistic means I would have remained clueless.
“I’ve described my experience of undergoing the ADOS autism diagnostic assessment as the time when I ‘felt’ most autistic, as if it drew out all my inner autism, the ultimate ‘show and tell’. Looking back, I don’t think I was ‘feeling’ autistic, I was just an autistic under pressure, interpreting my own behaviours through my knowledge of how others have described autism.” (PS)
Diagnosis is more than a ‘label’.
The process of diagnosis, the lead up to the final ‘ta-dah you meet the diagnostic criteria’ moment can be as important as the ‘label’ itself. A good diagnostic process will explore strengths as well as weaknesses, will be broad-based to ensure any co-occurring conditions are identified, and will be an empowering experience. Sadly, most diagnostic processes seem to be heavily deficit-focused, narrow in scope, and can reinforce feelings of inadequacy and deficiency. A good diagnosis will go beyond merely naming the autism and will provide evidence of those strengths, needs and possible adjustments. Sometimes we don’t know our own strengths until someone else tells us, we don’t just want confirmation of all the things we ‘fail’ at, we need affirmation and hope too.
It might not be autism.
My experience suggests that most people who think they’re autistic, who have done some research, in particular those parenting autistic children or with other familial links, and who pursue diagnosis, almost always get diagnosed as autistic. But it might not be autism, or it might not be ‘just’ autism, there may be other or co-occurring conditions which might benefit from treatments.
It may help with identifying co-occurring conditions.
Autism does not exist in a vacuum, and it is extremely rare for anyone to ‘just’ be autistic. People are complex beings, but sometimes unpicking and identifying one thing makes it easier to see other things, resulting in improved understanding and enabling more appropriate supports and care/self-care.
To ensure any treatments given are suitable.
Many autistic people describe unusual reactions to medications, and there are therapeutic approaches which may not be suitable. We do not yet know enough about differences in autistic neurology and physiology, but the prevalence of epilepsy, autoimmune and connective-tissue disorders (eg Ehlers Danlos Syndrome) among the autistic population suggests that, if there are autistic tendencies towards unusual drug reactions, we need to know who might be at risk from complications.
Diagnosis may protect us as we age.
We still do not know enough about autism and ageing, but I want it recorded that I am autistic so that if I am subject to neurological tests or placed in residential care, my autistic neurology is taken into account.
Diagnosis can remove doubt and provide clarity.
Like many late-diagnosed autistic people, I found the period of wondering whether I might be autistic incredibly difficult, unsettling and anxiety-provoking. Often our need for ‘proof’, to satisfy ourselves that we are right and that we are indeed autistic, becomes overwhelming and all-encompassing. As parents, the need for a diagnosis for our children can engender the same thoughts and feelings.
“Suspected-but-not-sure was the most stressful time for me … I was suffering with almost daily meltdowns, anxiety etc but felt I couldn’t ask for accommodations or call myself autistic or anything until it was official. Because if I was wrong then I would have lied. And I might not have needed accommodations as much as a boot up the arse.” (RS)
Many of us feel we cannot ask for the help we need without evidence of our autism, the worry that we might be wrong being ever-present.
“I don’t have a diagnosis, but I am on a waiting list. Have been for almost 18 months. I would never say to anyone that I’m autistic. I’ve said to a few … that I might be/it’s been suggested that/I’m waiting for a diagnosis etc. It would feel like lying because I don’t have a diagnosis.” (GP)
Not all autistic people have the self-awareness or cognitive abilities to recognise their own autism. And what about the children?
Seriously, anyone who suggests that we should abandon clinical, medical and psychiatric processes to diagnose autism needs to think about what we replace it with, because we have to have something. It is beyond arrogant to claim that because some autistic people can identify their own autism that this should be considered as an alternative to clinical diagnosis (yes, I have seen it suggested that self-diagnosis is superior to clinical diagnosis). We, as in those of us autistics who can articulate this stuff, need to tread carefully and not throw less able autistics under the bus in our pursuit for de-pathologisation. We need to ensure that we don’t give clinical commissioners a ‘politically correct’, autistic-sanctioned justification for cutting back diagnostic services for children.
Clinical diagnosis can prevent misinterpretation of observed behaviours.
It’s never advisable to make assumptions based just on what we observe. We all have a different set of filters through which we interpret and make sense of the world around us, and this affects how we view what people do, and how other people interpret our observable behaviours. For some of us, the certainty of diagnosis equips us with a set of filters we can hand out to people we know and meet so they can see us through an autistic lens. This not only helps them understand what we do and why we do it, it can also help us feel less awkward and embarrassed when we behave in unexpected or unusual ways.
“I particularly hate shutting down. I’m a calm, compliant, easygoing person and when I shut down I’m an arse and then I’m being an arse who can’t talk. It looks like bad behaviour – it is bad behaviour – and I hate being unable to stop it.” (HA)
Self-diagnosis is not enough when you need help, support and access to services.
Like many, I would not have got adjustments at work or support as a disabled student without a clinical diagnosis. This is often a driving force for adults seeking diagnosis.
(n.b. this can also work the other way, for example, speech and language therapies are often inaccessible once a child is diagnosed autistic…)
“In an ideal world we would adjust things individually for every child at school/person at work etc and then we wouldn’t need diagnoses. We could just do whatever works for the person. But those kind of adjustments/that kind of individualisation costs money, so right now we have the diagnosis barrier. So absolutely essential to have a diagnosis to get any kind of help at all.” (GP)
“I would never question someone who has self-diagnosed but I do desperately want an assessment (and hopefully diagnosis) for myself. I do think it can make a difference psychologically and practically (it’s really hard to get support for autism but even harder without a diagnosis).” (FG)
Support needs aren’t always obvious.
Many, many autistic children and adults hide their difficulties, not always consciously, which means support can be hard to access without clinical evidence that the difficulties exist.
“I fought to get both my boys diagnosed as early as I possibly could despite neither really ‘needing’ any outside support right now because I know how long the process can take and I wanted both to have the diagnosis in place before I needed any official support for them. Because both boys … are very good at masking I feel I need the back-up of the professionals for anyone to take me seriously.” (FG)
Clinical diagnosis provides legitimacy and can be empowering.
Diagnosis has been positive, affirming and freeing for me and many others.
“For me, my diagnosis was a massive relief because it means I can understand who I am…” (HT)
“… I was only diagnosed in … and I am still processing it but actually having a diagnosis has allowed me to give myself permission to fail at things or not cope with them. All my life I have hated not being able to do stuff or cope with day to day life without becoming exhausted and stressed. Now I can say fuck it, there is a reason and that it’s ok. I can give myself space and I can tell others that I need space too, even people who don’t know I have a diagnosis, because I know. I only went for the referral for me!” (RT)
“Knowing it’s likely has in itself made a huge difference … it’s enabled me to realise that some things are just genuinely more difficult. It’s not that I’m lazy or stupid … I’m just different … I still feel fraudulent though. I feel like I really need that medical ‘yes’. A big part of my brain still says ‘what if you are using this as a convenient excuse, what if you are lazy, badly disorganised and a general disaster zone in public?” (WS)
“I needed the confirmation from an expert. Years of doubting myself and believing I was rubbish meant I couldn’t accept for myself that there was a reason for it. Even now I’m struggling to shake off the deep-seated belief that I’m crap, but I have the chance to work it out, which I never could have without a diagnosis.” (HT)
“I wasn’t comfortable with self-diagnosis. I needed it to be definite, clear cut. I also needed a diagnosis for work where I was struggling. It took 18 months from being referred to getting assessed which was a very stressful time … I cried with relief when I was finally diagnosed, I finally had an answer for why I am as I am! Now I’m much kinder to myself, I don’t beat myself up as much, I don’t have meltdowns as often. I managed to move jobs to something less stressful too.” (FA)
“I was self-diagnosed for a while but I felt like a fraud. However sure I was, there was always the worry that actually I was just a twat who couldn’t cope with the demands of daily life. The diagnosis was an enormous relief. So I’ve gone from someone who felt there was definitely no need to look into formal diagnosis to someone who desperately needed to know.” (HA)
Being autistic is more than an identity.
Without a doubt, autism has given me an identity and a sense of belonging I never actually knew I was lacking, but it is more than that, and it isn’t all positive. It has impacted on my life in so many ways, limited me and continues to limit me, and I need to be able to say that. We need to be able to talk about the hard bits of being autistic, to learn from each other and to ensure that we can get support. We need to acknowledge how hard it can be so that people don’t feel like failures when they’re having a tough time, and so that it is absolutely clear that we need supports and adjustments and accommodations.
“I wonder if anyone seeing ASD as an identity is missing the point somehow, because it’s not something you choose, it can be bloody difficult, and I’m not sure it’s something I would knowingly choose for myself or [my children]. As a family we can talk positively about ASD, but it’s alongside acknowledging that it can be very distressing and difficult.” (HT)
“I loathe the phrase ‘identify as’. It offends my love of clear language and efficiency because it doesn’t mean anything. The whole point of diagnosis is that the thing you’re being diagnosed with affects your life in some way negatively and that you get help for it. Taking on an identity is a way of joining a group. They are completely separate things.” (GP)
“… it’s not all positive and happy outcomes, I am really shit at this parenting malarkey, because three (possibly more) autistic people in one house is a fucking nightmare most of the time, with clashing needs left, right, and centre. My only hope to keep things ticking over … is by being permanently chirpy, active and flexible, which I can do for a day or so, then my mental health suffers…” (HT)
I am not saying that self-diagnosed people aren’t autistic…
The chances are that most ‘self-diagnosed’ autistics are indeed autistic.
“I have nothing against self-diagnosis as such, I think if someone has thought about it and researched it as much as I did during that time, the chances are they’re right. But it wasn’t for me, even now I can’t say ‘I’m autistic’ to a professional without clarifying that my diagnosis says Asperger’s.” (RS)
“I don’t have a problem with someone self identifying, and most autistic people I’ve personally met have to go through that stage before they can go on to seek diagnosis – let’s face it, there isn’t the understanding of ASD for anyone to be referred without a battle, unless they are obviously autistic.” (HT)
… but, diagnosis matters.
Hopefully this piece has given some food for thought, feel free to comment and share. Thank you for reading.
Massive thanks to the band of rebels who helped me write this piece.
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.
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.
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.
[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]
Today I had my needs assessment for Disabled Students Allowance. It’s 12 years since I first wondered if I might be autistic, a little over 2 years since an initial assessment indicated that I was autistic, and a year since this was confirmed by a full clinical assessment and diagnosis. I should have had plenty of time to think about what this means, but every now and then something happens which reminds me why I needed a formal diagnosis and why recognising myself as autistic and disabled, and being recognised as such by others, is important. Not just important to me, but also important to others with ‘hidden’ disabilities, including far too many children in schools whose needs are going unmet because they don’t ‘look disabled’.
All through my son’s primary school years, and it’s a similar story for many parents, his need for support was a constant battle, with school minimising need and me advocating on his behalf. The SEN system for children is largely adversarial and parents frequently talk and write of ‘fighting’ and ‘battling’ for support. Despite claims of collaboration and child-centred planning and support, the very need for a parallel system of ‘independent supporters’, to help and guide parents through the system, is indicative of a system not fit for purpose. To design a system for parents and young people to use which cannot be used without external help is utterly ridiculous.
(The same thing has happened with the introduction of Universal Credit. The system is so complicated that independent advice centres have been set up to help claimants through the system)
My first experience of asking for support was through work. After increasing struggles and meltdowns I was referred to an occupational health doctor. I had a very supportive manager who had already responded positively to my own requests but we were keen to find out if there was more that work could do. Despite requesting an assessor who had autism experience I was allocated to a doctor with a specialism in epidemiology. It was clear when I saw him that he had googled autism while I was waiting and had no clue about what might be helpful to me in the workplace. His reference to autism as a disease and his assumption that I had some sort of middle-aged onset autism didn’t fill me with confidence. He was unable to make any suggestions and his report merely recommended the few adjustments I could think of.
I had heard positive things about Disabled Student Allowance assessments and friends had commented how easy the process was in comparison to their experiences with schools and other government departments. Based on my previous experiences of accessing support for my son in school, for myself in the workplace, and many years supporting people to access benefits, housing and other welfare provision, I was skeptical and decided not to apply to prevent myself any extra added stresses!
In the summer I met with a disability advisor at my new university who recommended that I really should apply for DSA and he started the process for me. After a palaver getting a passport and nearly giving up at that stage, I sent in my identification documents and a copy of my diagnosis summary.
This was not enough. DSA needed more evidence:
“For an autistic spectrum disorder, please arrange for your doctor or other qualified medical professional to complete the enclosed disability evidence form. Alternatively you can provide any of the following documents:
Statement of SEN and Transition Plans
Individual Education Plans
Learning Difficulty Assessments
A letter from your doctor or medical professional which confirms the following information:
a diagnosis of your condition
your condition is long term (more than 12 months)
how your condition has an adverse effect on your ability to carry out daily activities”
“Further to your letter I have sent a copy by post of the psychological report outlining my diagnosis of Autism Spectrum Disorder. The report refers to a further report which was largely history taking, is deeply personal and private, and which, therefore, I will not be sharing.
As I was not diagnosed until the age of 46, I do not have documents such as SSENs, IEPs, LDAs etc. Even if I did, they would be woefully out of date by now.
You ask for evidence to support that my “condition is long term”. Autism is recognised as a lifelong neurological condition and, as such, can never be transient. I am unable to provide specific evidence of it being a long-term condition, as this is implicit in the diagnosis.
I have not seen my GP about my diagnosis (or indeed seen my GP at all for the past 10 or so years) so he is not in a position to comment on how “[my] … condition has an adverse effect on … [my] … ability to carry out daily activities”. The diagnostic criteria is clear that to be diagnosed with autism: “Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning” (DSM5 ASD criteria). As above, it is implicit in the diagnosis that there are significant ‘impairments’.”
And I waited.
At this stage I decided it was all too much hassle and I would be fine without DSA as I’d been fine with my previous studies.
Eventually I received a letter informing me that I was eligible for DSA and today I had my needs assessment.
My assessment was carried out by an organisation called ‘Contact Associates’ who provided excellent pre-assessment information with clear directions, details about parking (very important!) and how long the assessment would take. My assessment was conducted by a mental health specialist who demonstrated an excellent understanding of the range of support needs for autistic students.
I went into the assessment thinking I didn’t really have any support needs. It was only through my assessor’s careful exploration of how I study and finding all the little supports and adjustments I craft for myself, that I realised I do actually have some needs for support. It’s not that I can’t organise myself and produce academic work to a high standard. I clearly have and can, or I wouldn’t be embarking on a PhD! It’s that the effort and time it takes for me to do that is more than an ordinary, non-autistic, non-disabled, student would require. By adding in some human and technical supports I will hopefully be able to study more efficiently and more effectively without sacrificing all of my time and well-being.
What was most remarkable about the assessment, and in stark contrast to my experiences dealing with school support for a disabled child, was the sense that the assessor was an ally and an advocate, not an adversary. All too often schools and local authorities disbelieve and disregard professional opinion, because they can’t see ‘the problem’. We have to repeatedly explain our children’s difficulties and stress that just because you can’t see it doesn’t mean it’s not there.
But, having completed (not without much angst) the earlier paperwork evidence stage which proved my eligibility, todays assessment took that as given. I have a diagnosis. I have been officially assessed by an experienced professional to have met the criteria for that diagnosis. Attending an assessment where I did not have to again prove my disability, or list my deficits, or explain how despite being a reasonably competent adult I do struggle with a lot of things most ordinary people take in their stride, was liberating and empowering. My assessor felt like an advocate, not an adversary.
The DSA system for proving eligibility clearly needs some work, but without doubt, as a whole it is a vast improvement on the SEN system for children and young people.