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.
‘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:
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.
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!
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.
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.