05 Dec Processing emotions post diagnosis (part 1)
An autism diagnosis (as well as the often ongoing process of disclosing and witnessing other people’s reactions) can play on your mind and heart in innumerable ways, giving rise to a whole host of often mixed and confusing thoughts and emotions. One of the biggest things I struggled with post diagnosis was trying to make sense of what I was feeling. The emotions were definitely there because I could feel them, sometimes very intensely, whilst at other times they were somewhat muted and dulled but still dwelling somewhere deep down. The feelings often manifested themselves in the form of physical sensations: a tight chest, a warm feeling around my heart, a queasy stomach, a soaring feeling in my gut. But they were confusing because I couldn’t easily identify what they were, nor separate them out, assign them a precise label with any confidence, or determine where they came from. All this kind of freaked me out. I tend to live life at quite an emotionally neutral level which I find natural, easy and comforting. When something big happens and the intense emotions do get unleashed, it can be hard to deal with.
Because of being somewhat alexithymic, I tend to intellectualise my feelings which becomes an exercise in trying to identify what I think I feel. What are these feelings? How many of them do I have? What might have triggered them? Are they a problem I need to try to do something about? Writing proved to be the most effective way of unpicking these questions and trying to add clarity to my emotional experience. But still, intellectualising and writing are not perfect methods because I’m still only getting an approximation of how I feel pretty much based on what I think it would make the most sense for me to be feeling. Often I’m not even sure that I am experiencing a certain emotion. It can seem a lot like guesswork. And sometimes, the more I start thinking, the harder it becomes to tap into the feeling, as if I can only either think about or feel an emotion at any one time. And the thinking never really seems to do the feeling justice, as if the emotion eludes any attempt at being captured and defined by mere words.
I wrote pages and pages about (what I thought were) my emotional reactions in the weeks and months following diagnosis, which proved to be quite a useful coping strategy. I also found reading about those in a similar situation served as a useful guide for common emotional reactions that might also apply to me. I ended up condensing my notes down into table format so I could more easily visualise and gain a sweeping overview of the different emotions I was having. I noticed that a lot of these were directly conflicting or oppositional and that a negative interpretation could be paired with a positive (and often more valid) perspective on the same issue. I’ve decided to include a version of that table here. I came up with 12 negative emotions that seemed to be affecting me and then a positive reframing of each one.
If you are recently diagnosed, or an autistic person dealing with a particularly heavy emotional load, and especially if you struggle with alexithymia, this might serve as a useful set of prompts for the types of emotions you might expect to experience. It may help you with trying to identify and understand certain thoughts and feelings in yourself and with potential ways of reframing them if they seem overly negative or irrational to you. As always, everyone’s experience will be unique, especially when it comes to something as personal and complex as our emotional lives. Thoughts and feelings in the post-diagnosis phase will obviously be affected by so many factors – our personality, experiences, diagnosis experience, knowledge of and level of interest in autism, the people around us and their reactions, our capacity for introspection, and on and on.
Before diving into the nitty gritty, just below you can find a summary for easy reference of the various emotions I identified and how they can potentially be positively reframed. Please let me know in the comments if you have any more that you might have personally experienced or heard about – I’m sure there must be plenty of them![/vc_column_text][/vc_column][/vc_row]
PROCESSING AN AUTISM DIAGNOSIS:
A road map for overcoming negative thoughts/emotions and focusing on the positive
Negative thoughts & emotions
1 – Stigma of autism in society
2 – The reality of many negatives associated with autism
3 – Worry about negative perceptions from others. Possible negative reactions to disclosure.
4 – Sadness at (real or potential) difficulties of being autistic
5 – Shame
6 – Comparisons with other autistic people
7 – Comparisons with neurotypical people
8 – Overplaying the autism factor?
9 – Sense of alienation
10 – Worry about the future
11 – Doubting the impact self-awareness/diagnosis can make
12 – Regret over late diagnosis
Positive reframing or resolution
1- Questioning stigma. The value of difference.
2 – Nothing can be entirely positive
3 – People are generally not mean, just misinformed. Most will be positive or neutral.
4 – There are many positives (esp. if you’ve been lucky with your circumstances).
5 – Focus on what’s right for you, not societal norms.
6 – Every autistic person is different. Be empathetic.
7 – You’re not comparing like with like. The norm is highly subjective. The norm can often be problematic.
8 – Accept the feeling (it’s normal) and give yourself time.
9 – There are more similarities than differences. The discovery of a new community!
10 – Reasons to be hopeful
11 – Knowledge is power. Relief, understanding and empowerment.
12 – Potential drawbacks to earlier diagnosis. Gratitude to have found out now at least. (This one can be reversed in cases of early diagnosis.)
Side note: Sometimes I talk about myself experiencing the emotion, using “I”. Other times I write as if I’m talking to or about someone else and use “you”, even though I’m still really referring to myself. I’m not quite sure why this is (it could be autistic pronoun reversal thing?), but hopefully you can bear with it. Another note: There is also some serious mix up with tenses at times, but for good reason – some of these emotions I experienced in the past, others I experience only now, some straddle both past and present, hence the mix up.
There is a mainly negative stigma associated with autism in society
Negative or mistaken perceptions about autism in other people and the general culture (as reflected in things like language, the focus on impairments, the “fix-it” mentality and so on) are all too common. I worried about internalising these messages, if only on a subconscious level. Before I’d properly come to understand autism or that I might be autistic, my views were more or less in line with those of the general population. This made me all too aware of how common and easy it is to believe or simply not know certain things about autism in the absence of any proper education. I think I can be especially sensitive to external views, especially anything negative, which perhaps has something to do with being autistic itself (though I know some autistic people say they feel quite immune to external opinions and judgements). It’s all very well saying “it doesn’t matter what society thinks, just ignore them”. But a) it can be hard to ignore, b) negative discourse around autism does have very real repercussions, both psychoemotionally and in more concrete terms. You can’t argue that the way society chooses to talk about and represent a group of people (especially minority populations) isn’t important. In fact, you could argue it’s the core issue. (Also, see 3.)
Questioning stigma and the value of difference
It’s important to realise that many people’s perceptions of autism and the ways in which autism is represented in wider culture are often unfair, biased and just plain wrong. (I will make a list of some common stereotypes and mistaken beliefs in a future blog post.) It can be useful to remember that this applies to many things besides autism as well. People lack accurate, nuanced understanding about many things, especially if they don’t have any experience of it personally.
The best strategy I found to help with questioning and reframing negative views was simply to go online and seek out thoughtful, critical and progressive people talking about the subject. The neurodiversity movement has gained a lot of momentum in recent years, so there’s a lot of great information out there geared towards countering misconceptions and charting a positive way forward, especially the work of autistic self-advocates.
One of the most helpful views I came across was the following: Current societal views around autism are culturally and historically contingent and highly subjective. There is nothing inherently wrong or right about autism, we choose as a society to make it one way or the other. It’s essentially a cultural decision to label autism as a disorder, to frame it in terms of mainly problematic symptoms, and even to diagnose it at all. It can be helpful to realise that logically there really is no objective natural truth for autism being a disorder. Society has constructed autism in this way just because it happens to suit society. Reading up on the social model of disability is a great idea too. It reinforces the notion that there’s nothing inherently wrong with autistic people; rather many of the challenges arise from the societal context we find ourselves in.
The neurodiversity / autistic self-advocacy movements also argue that autism is not a deficient way of being, but a different one, and one that can bring many benefits, both for the individual and society at large. From savant skills to special interests, outside-the-box thinking to unique ways of processing and appreciating the world, there is immense value in autistic ways of being. Unfortunately, society can be all too quick to overlook these positive differences. But this is starting to change and tapping into progressive developments can be very morale boosting.
As time went on I also increasingly realised that it doesn’t really matter what most people think. It is my own mindset that matters most, and I genuinely feel positive about autism and being autistic, which is great. As long as I can filter out and critically interpret whatever I hear, then I’ll hopefully be less likely to internalise problematic views. I was definitely most vulnerable to taking onboard demoralising ways of thinking or talking about autism when I knew a lot less than I do now. So increasing understanding and taking the time to think critically is really what helps. This might only be on an intellectual level at first, but hopefully it will filter through emotionally with time. Trying to share what you’re learning with those close to you is also great for encouraging more accurate and positive mindsets around autism. And if you want to contribute to the task of raising autism understanding and acceptance more widely then writing online is a great option – even if it’s just to help yourself feel better.
The reality that there are negatives and difficulties associated with autism
You can do all the neurodiversity-inspired “autism-as-difference-not-disorder” reading you want. But this doesn’t change the reality that there are many difficulties that come with being autistic. Moreover, not all of these challenges are merely the product of relations between an individual and wider society, as per the social model of disability. There are some difficulties that are core to the person (i.e. impairments) that have nothing to do with other people (though how others react is often key in determining outcomes and how disabling things become). Even if we could build a 100% autism-friendly society (What would this look like? Would it even be feasible?), would this eliminate all the challenges faced by autistic individuals? Probably not. Sometimes I can find it hard to deny that there isn’t some intrinsic problem or disadvantage here, especially when it comes to stronger forms of autism.
I sometimes catch myself thinking about autism in a negative way. This was especially the case in the weeks following my diagnosis. I also find that this negative mindset in itself makes me feel a bit sad, even ashamed. I had internalised some of the negativity. And I couldn’t deny that some of it is was a reality. At the same time, I didn’t want to be associated with something that is often perceived as inherently and unquestionably negative. I read things and exposed myself to progressive ways of thinking. But when I said to myself “autism is a good thing, it’s fine, I wouldn’t want to be any other way”, I couldn’t help feeling that I was partly lying to myself and perhaps in denial of the more negative but potentially realistic view of autism. (Or, more positively, perhaps this negative mentality was just a small part of me trying to test or sabotage how I truly felt.)
Of course, on an intellectual level I knew that the reality was more mixed and subtle: some parts of autism can be negative, others positive or neutral and all this changes over time and across contexts. But still, the thought of anything negative still bothered me. Perhaps this has something to do with black and white thinking: I couldn’t easily view autism as something that is both positive and negative at the same time. Or something to do with perfectionism. Or perhaps I simply felt that the negative framing didn’t reflect my own experience of autism (and that somehow others would struggle to believe this). (Also, see 4.)
Nothing can be entirely positive
No one person or thing can be entirely positive or perfect and it’s important not to deny the difficulties that you or autistic people in general face. I found it helpful to approach the more negative aspects from a rational perspective. Most of them are entirely logical and here for a very good reason. Many autistic traits are a way of dealing with our heightened sensitivity to the world and without them it would likely be much harder for us to cope. Autism makes sense and this helped me accept and embrace it. I can accept things that are logical.
With autism, as with most things, a lot of the challenging aspects can be directly flipped into more positive traits by applying a different perspective on the issue. In other words, it’s a package deal. If we didn’t have the weaknesses, we likely wouldn’t have many of the positives that autism brings as well. I also think that it can prove very useful to have access to a concept that provides relatively clear insight about what some of your likely weaknesses might be, along with coping strategies that might work. In this respect, neurotypical people have less of a ready-made guide or starting point for developing self-understanding.
It can also help to think that the negative experiences many autistic people face is, in part, a result of negative perceptions in the first place. In other words, it can be a self-reinforcing cycle. This may seem demoralising, but it provides hope for change in the future, and change that may be relatively easy to achieve (compared with trying to change autistic people themselves). If you can improve perceptions and attitudes, this works towards helping improve reality, which will then feed into changing perceptions even more.
I’d also add that it can often muddy the waters to start thinking about Asperger’s and strong autism using the same frame of reference. This is getting into controversial territory, though, so I’ll leave this topic for another blog post.
(Also, see 5.)
Worry about negative perceptions in others
This issue is similar to point 1, but relates to encounters with actual people rather than more broadly with discourse and at the more abstract level of society. There can be some degree of worry about negative judgements or misunderstandings from other people in relation to two points:
a – People judging/reacting to the autism label itself
b – People judging/reacting to what is perceived as atypical behaviour without them knowing you are autistic (what Tony Atwood calls a “moral diagnosis”).
There are many misplaced stereotypes that people associate with autism, some of which are not only inaccurate, but also hurtful, potentially even harmful. I will outline some of the major ones in a future blog post. Here, I’ve listed some of the different types of potential negative reactions to disclosure, in descending order from the very bad to the less bad:
-Outright negative judgement and discrimination. After disclosing, the person changes how they think about or treat you for the worse and makes this obvious to you.
-The person changes their perceptions or treatment of you in a way that is not welcomed, even though they are well-intentioned. Examples include patronising behaviour, lowering expectations, making assumptions about how autism affects you, attributing everything about you to autism, etc.
-A person unknowingly lacks information and understanding and they are resistant to learning, i.e. they think they know what is autism is when they don’t and certain stereotypes and misconceptions can have a strong hold on them.
-Overplay: People reacting with a lot of concern and emotion, with the underlying assumption that autism is negative, e.g. pitying (“I’m so sorry”), inspiration porn, suggestions for ways to fix, cope, even cure.
-Underplay: Disbelief, perhaps even denial. Or downplaying via comments along the lines of “you don’t look autistic…”, “you must be very high functioning”, “aren’t we all a bit autistic?”.
-The person seems to lack any meaningful response or actively avoids pursuing the subject. Perhaps due to confusion, embarrassment or feeling that autism is a socially risky topic to talk about, or perhaps due to simple disinterest.
-A person who lacks information and understanding, but is very aware about this and open to listening and learning. (This one starts to merge into the positive reactions to disclosure.)
I think that the more overt types of prejudice are perhaps less tricky to deal with than some of the milder reactions. Overt prejudice is much rarer, of course. It’s also much more obviously wrong and therefore (hopefully) easier to challenge or dismiss. I think it’s often the comments that people think come across as well-intentioned that can actually be the most pernicious. At the end of the day, you should never have to put up with people talking about autism or autistic people in a way you aren’t happy with. Especially if it’s directed at you personally, it’s your right to correct people (nicely works best!), explaining why you have an issue with their words or behaviour.
The second type of issue relates to worry about appearing different to others, whilst knowing that people may be confused or offended because they don’t know you’re autistic. (One way around this, of course, is to tell people about your diagnosis, but this isn’t always easy or appropriate. Also, having others know, doesn’t necessarily put a stop to any anxious feelings you might have about being or appearing a certain way – see section 6 on shame for more on this). Speaking for myself, whilst I felt pretty happy with the autistic identity myself, when I first brought others into the picture it seemed to introduce some level of anxiety and uncertainty.
This anxiety may be rooted in common autistic social issues themselves. It may be caused, in part, by difficulty reading people, anticipating their perspectives and reactions and responding “appropriately”, creating a degree of paranoia. The worry might stem from a difficulty in knowing or being able to control how you come across to others. It may be linked to past experiences of others saying certain things or behaving in certain ways towards you. It will very likely be fed by the awareness that there are pressures to appear and relate in a “normal” way that might be difficult to uphold. I imagine that this self-consciousness and doubt probably applies most to those who are not “obviously autistic” and yet aren’t able or willing to perfectly camouflage their traits either. The people in-between, who others might notice as being a little different – perhaps unusually quiet or shy, a bit abrupt or odd in some indefinable way – but without being able to decipher much beyond that.
Sometimes people will tell you outright – in a nice or not so nice way – that you seem different. Most of the time, though, they won’t. But you may still be able to sense that they feel or think a certain way about you (autistic people often have an especially strong sense for negativity in others, especially if it’s directed towards their own selves). Gaining the knowledge that you’re autistic could serve to increase self-consciousness because now you know for certain that you are different and may appear this way to others. There can also be some degree of internal stigma that is exaggerated, even imagined. All this can lead to an element of uncertainty and paranoia along the lines of: “I know I don’t quite come across like everyone else, even if it’s generally quite subtle, but I don’t know what exactly it is that makes me seem different. Even if I did I may not be able or willing to address it”. I myself, went through a period of wanting to ask people how I come across – which I did do with a couple of people close to me. But people might not be honest with you. Alternatively, they could be too honest and end up hurting your feelings.
Of course not everyone will worry about this. Sometimes I get the impression that these sorts of reactions in autistic people can be quite extreme – either caring way too much what others think of them, or not at all. It will likely depend on a mix of personality and past experiences. Gender might have something to do with it as well as girls are generally more concerned with wanting to fit in. Perhaps even the type of autism itself could have a bearing, whether it be theory of mind abilities, the degree of sensitivity to other’s emotions (especially negative ones), or something else.
Most people will be positive or neutral (those who aren’t don’t really matter). Most people don’t really care, so try not to worry. The value of having an explanation. Try to free yourself from the desire to be or appear “normal”.
a – People judging you knowing you are autistic:
Negative reactions are usually due to misinformation, not bad intentions. Most people aren’t mean, they just don’t know much about autism, and this isn’t their fault. I didn’t know much about autism before a couple of years ago and there are still so many other forms of difference that I am not informed about. People can’t be expected to know everything about everything. Of course, misinformation isn’t an excuse to go around saying thoughtless things. In fact, ideally, it should mean that people act extra sensitively, with the humility and awareness that they simply don’t know enough and can gain from listening to those that know more.
People who matter will be understanding and accepting, or at least make an effort to be. Even though they may be completely uninformed, they will be open to learning from what you have to say about autism in general and about yourself. Those who don’t make an effort to do these things, should send alarm bells ringing. In fact, it could be argued that disclosing serves as quite a useful filter for finding or keeping nice people in your life.
Things that can help when dealing with less than positive reactions and trying to inform people, include: talking about the huge diversity of autism; focusing on yourself and your particular profile of traits; correcting misplaced stereotypes; directing people towards good resources (articles, books, videos) if they’re interested in learning more; encouraging them to ask questions and making sure to keep opportunities for further discussion open in future.
Above all, people’s reactions are likely to be neutral, if not positive, especially those close to you – the people who matter most. There can be many, many positives to diagnosis and disclosure for those around you. It provides people with an explanation for the way you are. People may worry less and experience less confusion. It feels really good to be around people who are accepting and accommodating of your differences. People will hopefully be more inclined to take your concerns seriously if they weren’t before. You’ll likely feel more able to be more open and honest about the things you find challenging because now you have a legitimate and logical explanation for them. It can help take the emotional charge out of issues that previously seemed confusing. Your life should become easier as those around you strive to become more accommodating and supportive.
b – People judging you (negatively) without knowing you are autistic:
If you are late diagnosed, as I am, then this will likely remain the same as it has been throughout your life to date. There might well have been varying degrees of anxiety or shame about appearing different. And in all likelihood you will continue to come across as different – perhaps even more so if you find yourself leaning towards embracing your differences or want to stop trying so hard to “pass”. Simply knowing you are autistic certainly doesn’t make you appear any less autistic or necessarily enable you to “fix” awkwardness in social encounters. But post-diagnosis, there’s one key difference that can help immeasurably: you now know how and why you are different. You can choose to disclose your autism diagnosis to others (or explain certain aspects of yourself without mentioning the A-word if you prefer). It can be quite good ammunition to fire back against any prejudice you encounter. Best of all, simply having the knowledge in your own head can be enough to make you feel a lot better about yourself in the face of any negativity.
To get to the heart of the issue, it’s also worth thinking about the value of caring what other people think. A huge amount has obviously been written on this in the self-help literature. You might want to think about how outward behaviour isn’t necessarily a true reflection of who you are as a person. This is especially so when you are autistic which can create a degree of disconnect between the internal (experience) and the external (appearance). People can very wrongly value style (i.e. non-verbal communication) over substance. It can also be helpful to realise that we have very little to no control over what other people think. Try to give up any desire to control this, especially when it comes to how others view you. Above all, it can help to realise that most people simply don’t really care about the majority of people. They are too fixated on their own self and life, as every one of us is. People close to you should care of course and you should care about them, but hopefully values like honesty and authenticity will be central to these relationships which makes things easier.
Finally, if you feel negative or insecure about being and appearing different, this is completely understandable… but it can be worthwhile trying to reframe your perspective. Different does not mean less, it just means different. Throughout history, people have often viewed anything different as surprising, unknown and thus potentially suspect, despite the fact that there is nothing inherently wrong with difference. Humans often simply interpreted new and unknown as potentially dangerous and hence to be avoided or perhaps eliminated. This makes sense from an evolutionary perspective, when our daily survival was under much greater threat than it is for most of us now. But hopefully we might be able to evolve out of this out-dated instinct with time – or at least use our intellect and empathy to fight it.
Attitudes are starting to change in society thanks to the neurodiversity movement, along with civil rights movements and growing acceptance of difference in other domains of life as well (learning to accept one form of difference often leads to an open-minded attitude to other sorts of differences). But there’s still a long way to go. This doesn’t mean you can’t have a positive mindset yourself, though, and make a conscious choice to adopt and apply it if needed. Accepting, embracing and valuing autism is probably the most important thing you can do for yourself. Don’t put pressure on yourself to be “normal” if you feel it does more harm than good. It can feel very liberating to express your differences in wider society (e.g. public stimming) and help increase societal exposure to neurodiversity. Even if there is negativity and doubt in people around you and society at large, there’s nothing to stop you making the choice to think positive. Although it might only be on an intellectual level at first, hopefully it will feed into the emotional realm as well via genuine feelings of acceptance, pride and optimism.
Sadness at (real or potential) difficulties of being autistic
Emotions such as sadness, grief and self-pity can be pretty common following an autism diagnosis. This is especially the case for those who are late diagnosed who will have more experience to reflect on and are likely to have struggled due to feeling different without explanation or appropriate support. There can be sadness in relation to the past (often in the form of regret – see 12), simply in relation to the fact you are autistic (especially if you’ve internalised negative views), and in relation to the potential difficulties you may face in future (see 10).
For me, the feelings of sadness were quite slight (or perhaps they were just hard for me to grasp due to alexithymia), but included:
-A degree of sadness about some of the typical things I missed out on growing up, especially in my late teens and mainly around social stuff. This doesn’t bother me too much though. I largely excluded myself, was pretty happy being alone a lot of the time and doubt I would have flourished in attempts to be more socially integrated. A part of me does wonder if my attitude might have been different if I’d known about my autism. Perhaps I would have taken adaptive measures to be social in ways that might have been easier for me – e.g. one-to-one, quieter environments, around specific interests. It’s impossible to say what the difference might have been with a diagnosis.
-Realisation that my difficulties are lifelong. They can be managed and improved, and may fluctuate naturally, but the core issues will likely remain the same. For me, this sadness applies to social issues, especially. Before my diagnosis, I think I always imagined that at some point in the future I would get over certain barriers and magically feel at ease in social situations.
-I also have a small twinge of pre-emptive grief about the things I might not be able to achieve or (perhaps more accurately) things I could achieve but that I wouldn’t be comfortable sustaining. This isn’t a strong feeling, though, and it’s mainly in the form of a fantasy stemming from social conditioning around what people are “supposed” to do. I feel fine about who I am and about the prospect of maybe having a less than typical life, as long as it makes me happy.
Interestingly, I also felt some guilt/shame around the very fact that I was experiencing some feelings of sadness and self-pity. I felt I was being too self-absorbed and that my situation didn’t deserve pity, thinking to myself “there are so many “worse” things than having Asperger’s”. I also didn’t like the fact that the sadness must mean I felt on some level bad about being autistic. There’s a really good video from The School of Life on self-pity which I happened across around this time. It highlights the value of self-pity, which can actually be seen as a form of self-compassion, and how we shouldn’t repress it because it can actually be helpful in reducing feelings of depression and in the realisation and acceptance of difficulties.
Overall, sadness was not a huge emotion for me. I think. I’m not entirely sure because I find it hard to identify what my emotions are, especially when they are mixed in with others. A lot of the time I questioned why I didn’t feel or act more sad. To the extent that I worried I might be repressing or denying any feelings of sadness, or somehow lying to myself about feeling pretty happy about my diagnosis.
In relation to witnessing sadness in others: I was reactive against any pitying behaviour (I didn’t want to feel there was anything to be sorry about), yet at the same time a part of me was craving more sympathy and compassion. It can be a bit tricky – figuring out how big a deal an autism discovery and diagnosis is and the sorts of reactions you should expect from those close to you – see 8 for more. I guess it’s best to just go with how you feel and try to stop second-guessing everything!
Moving beyond myself, I definitely did have feelings of sadness about the difficulties faced by a lot of autistic people in general. I felt especially bad for those struggling with being undiagnosed, mental health problems, encountering difficulties with getting diagnosed, or being exposed to negativity and perhaps growing up feeling bad about their identity/diagnosis, to the extent of wishing they were not autistic in some cases.
I also felt sad about the reality that it is undoubtedly harder to live life as an autistic person in this world. Of course, this is on average and it doesn’t mean that every autistic person will be struggling more than every NT person. I felt bad thinking that most people would not choose to be autistic (if they could choose before birth, before actually becoming autistic or knowing they would become autistic). Most autistic people would not want to change being autistic, myself included, but this is because most people do not want to change who they are once they are who they are. I also doubted that any NT would want to switch to being autistic.
I felt some degree of sadness, annoyance, even anger at the amount of negativity there seems to be around autism – to the extent that certain difficulties are painted as practically inevitable. This includes secondary problems such as mental health problems or bullying, which often seems to be expected or taken for granted. I realise this reflects the reality for many, but it doesn’t reflect my reality – certainly not wholly – and probably not the reality of every autistic person. I don’t like to feel associated with difficulties I haven’t experienced. Even those I have experienced don’t define me. I don’t like the idea of people potentially making negative assumptions about how my life might be because I am autistic.
Finally, I think many of the thoughts above had the effect of making me feel slightly vulnerable. Too open and exposed, as if people have insight into my potential issues simply through having the autism label. Of course, this is especially the case if you start talking or writing about your challenges and emotions to people in real life or on the internet. It can exacerbate exposure anxiety, which is already quite high in many autistic people. But perhaps this is precisely what we need to help reduce anxiety – exposure.
There are many positives associated with autism and reasons to be grateful. Plus, it’s healthy to OPEN yourself to feelings of sadness and vulnerability.
To help with thinking more positively about many of these issues, it first helps to realise that not everything can be entirely positive. Acknowledge the difficulties that you have are very real and legitimate – don’t try to deny or dismiss them. Don’t blame yourself for struggling (this is very important and something the social model of disability may help with) and don’t feel that you are underserving of compassion or support. Work to understand your difficulties: often a problem truly understood, is at least half way to being solved. Accept the issues that you can’t easily change (or don’t want to change), and focus on changing the things you want to.
Next, make sure you focus on all the positives! There are two areas to consider here. First, the positives commonly associated with autism itself and, second, the positive life circumstances that you might have had and various factors you can think to be grateful for.
Positives of being autistic: These will be different for everyone, because autism is so diverse and autistic traits mix in with everything else that makes us all individuals. Still, there are common areas of strength that are shared by many on the spectrum. These include excellent attention to detail, hyper-focusing abilities, honesty, strong morals, an appreciation for the (positive aspects of a) sensory environment that goes beyond the norm, and plenty more. I’ll dedicate an entire future post to the positives commonly associated with autism.
Positive life circumstances: These will likely help reduce the difficulties that can come with being autistic. Obviously this one is very dependent on the individual, and some people will not have been lucky enough to have had mainly positive influences in their life. Some argue that autistic people are more liable to negative life experiences because of their autism (and not just the luck of where you end up), even from very early in life. I think the orchid hypothesis (often applied to highly sensitive people) can usefully be applied to autistic people. By nature, sensitive people are more affected by their environment and thus in a way more malleable. Positive circumstances can influence them more positively than with the average person, whilst the fallout from negative experiences can be much greater than for a typical person. If you’re lucky enough to have enjoyed a good upbringing, conducive environment and mainly positive experiences, being autistic could actually be an advantage, putting you in a better position than your average NT!
I also find that it helps to focus on autism as a whole, on the fact it is a package deal. I think a big reason why I didn’t feel overly sad about my difficulties is because I knew they were intrinsically linked to other parts of my self, parts that I really value. So, for example, noise sensitivity is a huge problem for me. And yet, despite the pain and overwhelm I often experience, I find it hard to feel too down about it. Perhaps this is because I realise that getting rid of one thing would mean getting rid of a lot more and perhaps even changing who I am as a person. Noise sensitivity is a part of being sensitive more broadly – across all my senses, as well as emotionally – and there are many aspects of this I love, to the extent that I would not want to be any less sensitive. If you start thinking about challenging autistic traits and those traits or strengths you value, there are often direct connections between many of them. This might help reconcile negative feelings about the difficulties.
On vulnerability: It can be a scary emotion. But it’s also pretty powerful and potentially useful as well. Brene Brown did a great TED talk on this topic. Laura James, author of Odd Girl Out (a must read for all females on the spectrum, especially late diagnosed) also talks about the value, even beauty of opening to feelings of vulnerability. Being open and honest paves the way for increased understanding, accommodation and acceptance. Being vulnerable is a courageous thing to do and often opens avenues for connection. If you take the initiative to talk about your difficulties, this often encourages others to follow suit. It can also help diffuse the fear – if you are open about your weaknesses it almost serves to disarm people, taking away potential ammunition and actually reducing feelings of vulnerability. If it backfires and there are unwanted consequences, at least you will have learned something about the person/people involved.
Are we seeing autism reality? It’s easy to feel sad about the struggles faced by many autistic people in general because of all the negative discourse that surrounds us. But, I think issues with representation may mean that we aren’t getting a wholly accurate picture. It makes sense that we would hear about the most challenging or dramatic differences that autism can bring. These are what draw people’s attention and are what lead people to seek help. People who have been through difficulties are perhaps more likely to talk or write about their experiences (though, of course, the opposite could also be true – many people struggling will be too drained of energy to speak out). Meanwhile, we are perhaps less likely to hear about all those autistic people who are sailing along pretty much ok – including the large numbers of undiagnosed or closet autistics – simply because there’s nothing dramatic to report or they feel less need to speak about their experiences or seek advice and support. The reality is often pretty difficult, but we shouldn’t necessarily assume we have a representative picture.
Shame is a commonly experienced feeling for many autistic people struggling with things that seem to come so easily to other people. This is especially the case for those who are undiagnosed because of the lack of explanation and the expectations surrounding them. The true cause for their differences is not known and so the person themself, as well as those around them, searches for any or every factor that could potentially explain these differences. This might range from intrinsic things about them as a person such as personality traits, intelligence or morals, to past life experiences, co-occurring health conditions or something as banal as some aspect their appearance, such as hairstyle or dress sense. Based on comparing themselves to others, they feel that they are different. Based on others reactions to this, this difference is often interpreted in a negative light. And lacking any viable explanation, they tend to blame themselves for these perceived negative differences, leading to shame.
Of course, shame can also persist in diagnosed autistic people, though having the right explanation usually takes the self-blame aspect out of it. Autistic people, especially adults who struggle with seemingly simple tasks, may feel ashamed about any number of autistic traits – from struggling with basic daily living skills, to becoming overwhelmed by loud, busy places and needing to shutdown afterwards, to being unable to speak up in a group of people.
I think shame was quite a strong emotion in me before my diagnosis, but it was hidden deep down, perhaps because I was ashamed of the shame itself. Even now, I feel reluctant to admit that I felt or still feel a certain amount of shame about some things. I guess much of this reflects a pressure (imagined or real) to be, or at least try to appear, “normal”. Despite the fact I feel reluctant to include some of the below – because of the shame – I’ve done so anyway because I think it’s important that we feel able to be open about these things.
-I felt some shame about being very quiet and shy around people, particularly those I didn’t know well and especially in group situations. Growing up (and still today) I found it very hard to participate in a group interaction of more than 3 or 4 people. I didn’t understand why this was at the time. Sometimes I attributed it to myself – some aspect of my personality – though often I would attribute it to others as well – thinking they were talking about boring things, or being too loud or chaotic for my liking. It made me feel especially upset and embarrassed when people would highlight how quiet I was – I neither had the understanding nor the ability to give a proper response. (As a side note, never ask a quiet person why they are so quiet – it’s probably the last thing they want to hear and will likely make them feel a lot worse.) Though it’s not made explicit, it’s clear by asking this question people are indicating that they’d prefer you not to be this way, and it’s easy to interpret this as a form of criticism. Even though the person themselves might not see quietness and shyness as inherently wrong, the fact these things are generally not valued in our culture is often enough to lead to feelings of internalised shame.
-Even with the knowledge I am autistic, I can still feel slight feelings of shame, because the mere knowledge doesn’t make my traits magically disappear. In social situations, I am usually painfully aware whenever I seem to be falling short of upholding neurotypical standards. I feel bad for creating anxious, confused or uncomfortable vibes within the interaction, feelings which I think are heightened because I am so sensitive to negative cues in others.
-I also felt some shame about struggling to make friends, or for being very introverted and preferring to be alone a lot of the time. All this led me to not wanting to open up about my social differences and difficulties. I felt ashamed about admitting to these things, even to those closest to me. Our culture really values sociability and it’s an integral aspect of life. So I understandably felt reluctant to broach the subject – it felt like admitting to a huge failure on my part. I also didn’t want to cause the people around me any worry. Post-diagnosis, it became so much easier to talk about these issues, which feels extremely liberating. Now, unlike at school, I’d never feel the need to hide or even lie about my social preferences, interests or how I like spending my time.
-More recently, in the years since graduating and since having stopped conventional full-time employment, I’ve felt some shame around how I spend my days and about my life trajectory, both its recent past and its potential future course. This mainly relates to my ability to work a conventional job and achieve financial independence. I feel a little ashamed about living with my parents and not making a full-time income in a “proper” job. I also feel shame (or perhaps it’s more FOMO – fear of missing out?) when I don’t travel abroad for a while or don’t seek out enough new and challenging experiences, and instead become “stuck” in a very routine way of living. This isn’t necessarily because I want to be out doing lots of adventurous things (though a part of me does I think), it’s more about how I match up to what most other people value. Perhaps it’s a bit of both? It can be hard to disentangle how much is what I naturally want or don’t want to do, and how much is external and internalised pressure from society. If you find that you aren’t following the conventional path laid out by society, either due to a lack of desire or ability, there can be some shame/guilt around this as well – to the extent that some autistics (even those who are diagnosed) continue to try to forge out as close to typical a life as possible, even at great personal cost.
Finally, I can sometimes feel shame in relation to the negativity about autism that sometimes surfaces in me. For example, I might find myself thinking negatively about a certain autistic trait I have – even if it’s quite banal, like the impulse to flap my hands. This is essentially internalised ableism. But I’m very aware that I am thinking in a negative way, and I hate that I am, which is what creates the shame – or more precisely the shame at the fact I feel ashamed. Similarly, when I’m learning about stronger autism I might catch myself thinking things like “that’s really bad”, “they seem so odd” or “I’m glad I’m not like” – horrible ways of thinking that I feel ashamed to admit to, but which can be hard to break out of. At the very least, being mindful of how you are thinking is a great start and then hopefully each of us can work on building empathy and understanding for those that fall outside social norms, including towards ourselves.
Focus on what is right for you, not societal norms
Thankfully, receiving a diagnosis and understanding the reasons behind common autistic traits greatly helps alleviate any sense of shame or self-blame for many people. Simply knowing that certain difficulties are common among autistic people is so valuable. It highlights that there must be very legitimate reasons behind behaviours that are so widespread and that there is, in fact, an entirely different way of being normal (or normal way of being different!). Nobody is to blame when things seem difficult, least of all yourself, and autism isn’t something we should be in the habit of associating with feelings of blame at all.
It can be really valuable and liberating to open up about things that you previously – or still – feel ashamed about. Try to comprehend the very good reasons behind certain traits or tendencies. Talk about them with understanding people, even if it’s hard (it’s usually what we find hardest to talk about that we are most in need of talking about). If you’ve been hiding parts of your autistic self, opening up will help reveal your true nature to others – and perhaps even yourself – as well as possibly highlighting the true extent of your differences and your need for the right support. Hopefully you’ll realise that any fears of negative judgement or repercussions were exaggerated, even imagined (especially in relation to those closest to you), or that they can now be more easily ignored or challenged where you do encounter them. It can feel very empowering to do all this and many newly discovered autistic people (especially late diagnosed) report dramatic feelings of relief and feeling reduced pressure to camouflage and “pass” as NT. (It’s a bit sad isn’t it that we need to be given a very good reason – like an autism diagnosis – before we can feel free to be fully ourselves, and sometimes even this isn’t enough.)
A great way to try to reframe feelings of shame is to think about where they come from. Shame is all about other people. It involves feeling that people will perceive you negatively for not conforming to certain expected norms and associated embarrassment or fear about this. If there were no other people on the planet, shame would not exist as an emotion. Guilt is a little different, it’s more of an internally-guided emotion, whilst shame is all about comparing yourself to others and feeling bad about yourself as a result of judgements and pressures that come in from the outside.
This means that it is societal norms which cause us to feel ashamed about some things, or proud about others. But these norms can be questioned. Being socially-constructed, societal norms are effectively biased and contain no objective truth or value outside of social reality. If you start to look at this social reality with a critical eye – which is arguably a pretty easy thing to do given the current state of the world – this can make you feel a lot better about not conforming to certain social norms (see section 7 for more on this). Perhaps we can then set about constructing a new set of norms that suit us as individuals, or the autistic community more widely, ones that make logical sense and that feel right to us. Hard though it often is (especially as we all tend to internalise so much of this stuff), try to disregard societal pressures that don’t seem to fit and focus instead on what is important or good for you to do or not do.