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!

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.

#1

NEGATIVE                                          

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.)

POSITIVE

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.

#2

NEGATIVE                                    

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.)

POSITIVE

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.)

#3

NEGATIVE                                    

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”).

a 

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.

b

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.

POSITIVE

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.

#4

NEGATIVE                                    

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.

POSITIVE                                  

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.

#5

NEGATIVE                                    

Shame

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.

POSITIVE

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.

PART 2 TO FOLLOW!

This post continues on from part 1, starting from point 6. I’ve included the table from the first post just below as a reminder of all 12 points.

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.)

#6

NEGATIVE                                          

COMPARISONS WITH OTHER AUTISTIC PEOPLE

It’s a very natural and often strong desire that most of us have to draw comparisons between ourselves and others. Some are more prone to doing this than others, and it seems that autistic people may actually be more immune to this than most. But this certainly isn’t always the case: many autistic people are prone to making comparisons with others, and some are actually far more sensitive to this than the average person. Personally, I have a pretty strong tendency to make judgements about myself, others and to draw comparisons which then effect how I feel. In relation to other autistic people – whether I meet them in person, watch a video or just hear about them– if they seem “more autistic” than me this can make me feel more at ease and perhaps confident about myself (especially in terms of social abilities). Conversely, if I seem “more autistic” than them, this can often make me feel insecure. This is probably at least partly related to a perceived/actual pressure to appear “normal”.

This is a ridiculous (though understandable) attitude, that I wish I could break out of. It’s not healthy or nice for either myself or the other people I’m judging. And what does it say about my underlying attitude towards autism (or at least “appearing autistic” to others in certain ways)? All I can say is that it clearly results from decades worth of internalised ableism combined with the usually innate human instinct to compare ourselves to others and to want to fit in. I really wish I wasn’t quite so judgemental, because it doesn’t reflect what I really believe and want to feel. I think this is a good example of how we can often understand things on an intellectual level (in this case, “being different is not only acceptable but awesome and valuable”), but not quite on an emotional level (“I want to seem as normal as possible”, “people who look different are weird”) because of years of conditioning, plus the innate instinct.

POSITIVE

EVERY AUTISTIC IS DIFFERENT (AND THIS IS GREAT)

Feeling somehow “better” than other autistic people for being or appearing more “normal” is something I feel really ashamed to admit to – even though (I hope) this is never reflected in my external behaviour, just internal thoughts that I can’t seem to help thinking. Trying to be mindful of this tendency is a good start, and I have got better at noticing and then trying to shift away from it. This can be helped through applying understanding. Learning about how autism works in all its immense diversity helps me keep valid explanations in my mind for the behaviours I witness in others. Applying empathy is really important. People are the way they are, often for very good reason, nobody can really help it, most people are just trying their best with the means that are their own, and so on. It should be easy for me to feel empathy towards autistic people, and generally it is. It can also help to think about how I’d feel if I knew someone was judging me in a certain way. Superficial judgements about people you barely know can end up being pretty flawed, perhaps especially so in relation to autism (where external appearances can sometimes be deceptive).

The judgements I make about others really have nothing to do with them, and everything to do with me. There’s a part of me that is clearly insecure about being autistic or appearing autistic to others. But, I don’t think this reflects what I really believe about being different (at least not on an intellectual level). I think it has to do with emotional conditioning based on years of living in a society where the underlying message is something along the lines of needing to be like and be liked by those around us.

Most important is to keep in mind that every autistic person is different. We all have different experiences, strengths and challenges and this is completely fine and to be expected. Comparing autistic people to each other is not comparing like with like. We are all autistic in different ways, to different degrees, and with vast sets of confounding variables relating to personality, upbringing, life experiences, values, health, etc which get added to the mix. So really these are meaningless comparison we should try to avoid making, or at least make an effort to reframe and detach from any judgements we do end up forming.

#7

NEGATIVE                                          

Comparisons with neurotypical people

Comparisons can go two ways: Viewing yourself either a) unfavourably or b) favourably compared to others/the neurotypical majority. When taken to extremes, these comparisons can lead to feelings of shame and depression or of arrogance and superiority, respectively.

a –

This tendency is at the heart of many of the emotions already discussed here, including sadness, shame and vulnerability among others. It is all too easy to compare yourself to neurotypical people because they are everywhere and most of their values, assumptions, patterns of perception, thought and behaviour are so taken for granted. It can be especially hard for undiagnosed autistics who do not have the all-important explanation for why they are different. See the section on shame for more on this theme.

b –

Comparisons can also go the other way: Considering yourself in a superior light and perhaps having a tendency to judge others negatively. A small minority of autistic people take the pride thing too far, holding the belief that their autism in fact makes them superior to others. They might uphold common autistic values and traits such as honesty, logic or intelligence as sacrosanct and in need of respect and accommodation from others at any cost. (An interesting side note – I know that some autistics with high IQs don’t seem to hesitate from sharing this information with others. This could be interpreted as arrogance, but equally I’m pretty sure most of these autistic people don’t see it this way, not realising how such a comment comes across to others. To them they are simply stating a fact and that is it!) Given the current negative context surrounding autism, we definitely need to be leaning towards emphasising the positives, but sometimes there is a danger of going too far in the other direction. Adopting an arrogant attitude is a coping strategy that Tony Atwood identifies among some autistics, especially undiagnosed. It’s often triggered by past negative experiences and judgements and usually stems from feelings of insecurity.

In relation to myself, whilst I don’t harbour feelings of superiority, I do tend to be quite a critical person (although it’s not often I make any negative judgements known to others – most of the judging stays inside my own head). I’m pretty critical of many aspects of mainstream society and the types of things a lot of people seem to spend their lives doing. This includes everything from eating junk food to drinking (too much) alcohol, buying consumer crap to filling hours watching mindless entertainment. Making unhealthy lifestyle choices (not exercising, smoking), to being preoccupied with appearances (make-up, grooming, fashion). And especially working meaningless or even harmful jobs that are implicated in perpetuating environmental depletion, consumerism, poor health and addiction.

Now, this has nothing to do with autism per se. Except that it does because neurotypicals make up 99% of the population, so when I’m making negative judgements about society, I’m essentially talking about what is a neurotypical society. Of course, I’m not saying that autistic people (including my younger self) don’t engage in the above behaviours, that would be absurd. But sometimes I can’t help wonder whether a lot of these behaviours are a product of neurotypical brain wiring and whether perhaps in an hypothetical majority autistic society we might be able to make some improvements on these things. So essentially, I can be pretty judgemental of mainstream society and many of its “typical” ways, which effectively implicates NTs, especially as some of it seems to stem from arguably quite neurotypical ways of being (for example, strong impulse to do what others are doing without questioning it, or needing high levels of stimulation that can lead to stress, mindlessness, addiction)

Is there something about being autistic that can make a person more or less prone to being judgemental? On the one hand, many autistics highlight that they are remarkably non-judgmental towards others – perhaps because they are simply not wired to draw comparisons or to be competitive in this way. However, this isn’t the case for all and I can see how certain common autistic traits (logic, honesty, black and white thinking, perfectionism, strong morals, etc.) could lead a person to develop a strongly judgemental attitude about what is right and wrong in other people and society more widely.

POSITIVE

You’re not comparing like with like!  The norm is highly subjective. The norm can often be problematic.

Dealing with feelings of inferiority

Whilst not wanting to condone an arrogant attitude, it is helpful to try to adopt a more critical approach as a way to combat negative comparisons. It’s therefore helpful to tap into aspects of what I outlined above: being critical of mainstream society and typical modes of behaviour, whilst avoiding sliding into feelings of superiority.

I’m pretty sure that one of the biggest reasons for my positive attitude towards autism/being autistic is related to how I view mainstream society – its values and ways of doing things. I was schooled in this way of thinking for a good few years, mainly through studying International Development with a strongly critical edge at university. This involved looking at the workings of neoliberal capitalism and how the (hidden/not so hidden) power relations underpinning it are implicated in so many problems in our world: poverty, extreme inequality, environmental destruction, corruption, discrimination, exploitation, violence, slavery, paid slavery (i.e. most jobs?) and arguably mental health issues and stress-related health problems as well. Basically, there are a lot of things about our world that are just plain bad and through my studies and interests I became quite attuned to adopting a critical approach towards describing and analysing why this was. As a result, when it came to learning about autism and how it is situated in society, it was natural for me to apply this same critical mindset.

In many ways, I don’t particularly see mainstream society as worth fitting into. I don’t want to have the typical life that most people have – working a conventional job, living in the suburbs, raising kids, going out to shops or restaurants or bars for “fun”. This is an attitude I already had pre-autism discovery and I’ve found it’s a pretty comforting and liberating attitude one to have. In fact, I had a pretty serious desire to escape it all to go and live in a cabin in the wilderness. And now I understand why. I’m pretty sure I would not feel this way, at least not to the same degree, if I was not on the spectrum.

For me, and perhaps others as well, it can be a positive case of not fitting into something you don’t really care to fit into. (The problem arises of course when there’s sometimes no choice but to fit in order to, say, earn money, or as a means to getting to somewhere you do want to be). Can you argue that a person is disabled if what they’re disabled from doing are things they don’t want to do anyway, e.g. working in an open-plan office, socialising in groups, spending an afternoon in the town centre? (Though I understand perhaps the “disability” is in not wanting to do these things in the first place!)

Alternatively, I can see how an autistic person who has not been exposed to this sort of subject matter, or who is not used to making lots of critical interpretations, could hold a slightly idealistic view of society. They may feel quite desperate to fit in with it and resentful if they struggle to do so – whether that be through having a certain job, socialising regularly or in typical ways, basically wanting to do a lot of the things that society upholds as important. But the norm is very subjective. There is nothing much that is inherently right or wrong (unless you are hurting yourself, others or the planet), we just decide that certain things are right or wrong for social-cultural reasons. And this reasoning can be subject to questioning, because it is not natural, objective, necessarily logical or even delivering beneficial effects in a lot of cases.

I think a critical attitude is a good thing to have and something to be encouraged. The world is wrong in so many ways and we urgently need people who are willing to think and act in ways to try to change it for the better. Obviously this is in no way exclusive to autistics. The world is full of critical thinkers and people choosing to break from the conventional mould. But, in my case at least, I’m pretty sure autism plays at least some role in encouraging critical and divergent thinking and perhaps a clearer perspective on social norms (being more able or willing to question them).

I think there’s an argument to be had that many of the things wrong with the world perhaps reflect NT behaviours taken to the extreme. This is a vast and potentially offensive over-generalisation, but there could be some truth in it – they do make up 99% of the population after all! I think that being autistic makes it more likely that I will question, avoid or take action against certain negative aspects in society – purely because they may simply be intolerable for me to live with personally. Being in some ways on the fringes of typical society means being outside of a lot of the negativity and destruction that goes on. And it just so happens that a lot of this stuff is not just bad for me/autistic people, but bad for a lot of individuals, for the environment and society at large. It could be that most NTs just don’t have the degree of sensitivity that might alert them to the harm that is being done (e.g. with junk food).

It’s interesting to consider a remark made by Nick Walker that working to create a more autism-friendly society would basically be equivalent to creating a more human-friendly society (because we’ve gone too far in one direction in terms of noise, intensity, speed, stress, even connectivity). Being sensitive can be a valuable thing. It’s sort of like the canary in the coal mine effect: Autistic people are generally suffering more from the excesses of society, but this should be read as an alert that there is something wrong with society, not with the (sensitive) canary. If more people were intolerant of things like noise, ugliness, chaos and freneticism, as most autistic people are, perhaps the world would be a nicer place to live in sensory and aesthetically wise, with less stress and other negatives. It’s interesting to consider the hypothetical benefits of a world in which the numbers were reversed (i.e. 99% autistic). I’m not saying NTs can’t or don’t embody many of these values. These are all human qualities. It’s just that autistics, being more sensitive, are perhaps better wired to become or stay attuned to them. Examples of a more autism/human-friendly society might include:

– More macro-level empathy (rather than preoccupation with only an immediate social circle), more quiet, slower pace, less hectic lifestyles, more time for intellectual pursuits, less intense competitive crazy work culture (with no open-plan offices!), less time wasting on (pointless?) socialising (especially the type that even NTs don’t really enjoy, like meetings for the sake of meetings at work), less herd behaviour, less overstimulation, more peace, stronger appreciation for nature, more visual beauty, more empathy for animals, perhaps less pointless economic activity and menial jobs (especially customer service oriented), perhaps less expectations and standards around gender, and more acceptance of diversity and difference?

So we’ve addressed how the norm can be highly problematic and perhaps not worth fitting into, as well as being extremely subjective, open to questioning and amenable to change, or at least with options for escaping and crafting your own alternatives. These are all valuable things autistics may be especially well suited to doing.

Other tips for dealing with feelings of inferiority vis-a-vis the NT majority might include:

– If as an autistic person you were NT instead, it’s true that you would probably struggle less with certain things you currently find hard. But you might also find certain things you find easy as an autistic person much harder as an NT. You would still have issues in your life, they’d just be different ones.

– Remember that everybody has problems. We just don’t know about them as well as we know about our own. People, and perhaps NTs especially, can be very good at hiding their problems. I also heard mentioned (by Sarah Hendrickx think) that autistics can sometimes be prone to forgetting the fact that most people struggle in some way or another. This could be related to social isolation and not having much chance to hear about others personal issues, or perhaps because of finding it hard to focus on the wider context.

– A final point, remember that you are not comparing like with like. A good metaphor I’ve heard some people use (most recently in the fantastic Odd Girl Out by Laura James): An autistic person comparing themselves to a neurotypical person is like a cat judging itself by dog behaviour. We are wired differently. We shouldn’t expect to meet neurotypical standards. Even if we push ourselves to, we may well find that attaining these standards does not make us happy. We can have our own autistic standards that are right for us as individuals.

Dealing with feelings of superiority

Autistic people can certainly be a step ahead of neurotypicals when it comes to certain things, but this doesn’t make us any better than them. We’re all different. We all have our strengths and weaknesses and we shouldn’t use these as a basis for developing criticism and negative judgements towards others. Just as we don’t want the NT majority looking at us through a narrow lens with lots of preconceived notions in mind, we shouldn’t fall into the trap of thinking this way about them either. If we want understanding, acceptance and accommodation, we need to practice these very things towards the non-autistic majority, leading by example if necessary.

We should certainly value and take pride in our strengths, qualities and accomplishments. But we should try to disconnect these feelings from the temptation to make judgements and comparisons with other people. Anchoring your self-esteem to points of external comparison is what leads to feelings of inferiority or superiority. Ideally, when we appraise how well we are doing it should only be in reference to our earlier selves. How we are progressing against ourselves over time – what can perhaps be thought of as a “vertical” comparison, rather than “horizontal” or “diagonal” ones that extend to other people.

What about if a critical disposition or strongly held beliefs, morals and values are causing you to make negative judgements about others, or society more generally? Perhaps try to bear the following in mind. People can’t really help who they are. We are all born with a certain set of genes, personality traits and various predispositions that lead us to develop certain strengths and weaknesses. These are all things that we have no control over, yet which shape us to a significant extent. Our upbringing and to a large extent a lot of our life experiences are largely out of our control. This might sound overly deterministic, and perhaps slightly pessimistic, but in a way it’s quite a freeing notion as it perhaps relieves some of the responsibility we feel for how our lives are going. Whilst I can’t always help judging people for being a certain way, at least I don’t extend to thinking it is their fault or that a certain behaviour even reflects who they are as a person. So much about life is pure chance. If I’d had the circumstances of someone in an unfortunate position (e.g. growing up in a disadvantaged environment) I’d probably be a lot like how they are now. In short, apply empathy/sympathy. Of course, the danger here is with falling into pitying others and perhaps seeing them as “less than” even if you are not blaming them. Ultimately, it’s probably best to try not to judge in the first place. The good news is that a lot of autistic people do seem to be naturally good at doing this!

#8

NEGATIVE                                          

OVERPLAYING THE AUTISM FACTOR – MAKING TOO BIG A DEAL OF IT?

Many autistic people seem to experience a phase (just before, during and especially after diagnosis) of being very focused on autism in a variety of ways. This is especially common for those receiving a late diagnosis and those who may have searched long and hard for potential explanations for their differences. From my observations, this seems to be something that affects females especially. This is perhaps because a lot of autistic females tend to be quite immersed in things like self-understanding, personal development, psychology and many of us are known to develop special interests in ourselves along with other people and the social world more generally. When we find the right nugget of information that explains so much, we can leap at it and not want to let go!

This affected me in a big way. I’ve developed a very intense special interest in autism – most of the things I read, watch, write and think about are autism-related. I’ve increasingly become noticeably “more autistic” in many ways (for a variety reasons, of which diagnosis is probably one). I’ve become emotionally invested in the autistic identity and community. I sometimes struggle to imagine a future where I’m not completely immersed on my autism interest and focused on the fact I am autistic. And when I look back to the past, I wonder how I was able to live without knowing such a fundamental thing about myself.

You could easily argue that I am overplaying the role of autism in my life. Some people around me have definitely implied they think this is the case. To an extent, I agree. It’s almost 18 months since my diagnosis and I’m as immersed as ever. A part of me wonders if this is “normal” (for an autistic person) or even or good for me. There are some aspects that could potentially be interpreted as negative: narrowing my field of attention, neglecting former interests and other parts of my identity, becoming out of touch with current events due to lack of interest, irritating people by talking too much about autism, perhaps creating self-fulfilling prophecies in terms of autistic traits, having a bias for wanting to connect with autistic over non-autistic people, and so on. On the other hand, deep down, I also suspect that this is probably just a phase and I am slightly afraid of what my life will look minus the intense focus on autism. I imagine the space will eventually be replaced by another special interest, but at this point I can’t imagine anything else ever seeming important enough to grasp my attention as much as autism is currently doing.

I’ve experienced some confusion over how big of a deal all this should be – being diagnosed, being autistic in an NT world, and the potential impact I should expect from this knowledge. On an intellectual level, I know it is probably best to simply accept how I am feeling and dealing with my diagnosis without questioning it too much. But for whatever reason a part of me wants some sort of objective perspective on just how important this is. Am I blowing things out of proportion? Or alternatively, am I not making enough of it? I think part of my initial confusion stemmed from the reactions of those around me which sometimes felt slightly underwhelming. This made me doubt my true feelings of “this is huge”, because if they didn’t (seem to) see it as a big thing, then perhaps my perspective was a bit skewed.

All this can be quite tricky to unravel. My autism diagnosis is probably the most important, intense and fortunate thing to have happened in my life (and perhaps that will ever happen). And yet… things are more or less the same as they’ve always been (besides a new obsessive focus on autism). It can be quite a paradoxical thing to live through. On the one hand, everything has changed (and things will never be the same again). On the other hand, nothing has really changed – I’ve been given a label and access to information, but I am still the same person I’ve always been and my day-to-day reality remains largely unchanged. Overall, I think the psychoemotional impact of a diagnosis can be big, especially in the short-term (see section on knowledge is power), whilst the more concrete practical changes might require more time to play out. We also can’t assume that we’re even aware of precisely how our diagnosis is impacting us. Some changes simply go unnoticed, taking place at very abstract or invisible levels. Also, we don’t have the counterfactual to allow us to compare how our life might have been if we’d continued undiagnosed. This means it can be easy to take things for granted, simply assuming this is how things were always meant to play out.

POSITIVE

THE FEELING IS NATURAL AND LEGITIMATE. GIVE IT TIME. THINGS WILL LIKELY NORMALISE AND BALANCE OUT. AND IF THEY DON’T, THIS IS FINE TOO – REVEL IN YOUR PASSION FOR ALL THINGS AUTISM!

None of this is necessarily negative. Quite the contrary, I think it’s perfectly natural, valid and to be expected. Especially for late diagnosed people who may feel they have so much to learn in order to make up for the “lost” time of living in the dark without the autism knowledge.

I think the key thing to remember is that there is no “should”. Everyone will react to a diagnosis in their own unique way and this is entirely legitimate. You’re perfectly entitled to feel exactly how you feel. Try not to question it too much, even if the reactions of those around you seem out of sync with your own. (As a side note, having people suggest to you that you should tone down your focus on autism will likely have the opposite effect and can feel threatening, encouraging the person to feel more invested in their new identity and interest)

For those worried they are too focused on autism:

– Think about the benefits and drawbacks of your intense focus. If you are enjoying yourself and seem to be getting something out of it, then great, just accept it for as long as it lasts. Perhaps it isn’t something you can easily control anyway.

– Whilst this certainly isn’t something that happens to everyone (some people don’t care to learn anything about their diagnosis whatsoever, whilst there are also plenty of people who in between the two extremes), it is quite a common trajectory to experience. In the first few weeks, months, even years following a diagnosis, it’s very normal to feel this way.

– Remember that there is also another step that people often progress onto following an intense focus on autism. In fact, autistic psychologist Christian Ferrer-Stewart illustrates the various progressions through autism discovery-diagnosis-identification-acceptance-growth. The phases he outlines are below. But note this is a simplification and in reality it’s probably quite likely that a person will encompass aspects from more than one stage at any one time. Watch his lecture to see the slides (they appear towards the very end)!

• Conformity
• Dissonance
• Fundamentalism < intense interest phase
• Resurfacing
• Self-integration

– The book, Nine Degrees of Autism, is another resource that outlines the autism “journey”. The final, ultimate, phase is deemed to be a place of greater equilibrium between autism and other aspects of your identity and interests.

– Similarly, French autistic advocate, Julie Dachez, describes the evolution of her identity in relation to autism with two Venn diagrams, in this blog post.

For those fearful about the prospect of moving on and losing their interest:

– We can get used to feeling comfortable focusing on and identifying so strongly with autism (or any special interest for that matter). It probably feels very securing and we may experience a lot of positive or intense emotions reliving and indulging in the sense of understanding, relief, validation and community we associate with the journey. This is fine as long as it is serving us well, but we might want to consider some of the potential drawbacks as well (see section above). Autism isn’t all that we are. There are multiple aspects of our identity that might be equally worth exploring. Especially if we had a variety of different interests and activities prior to diagnosis which have since become neglected, we might want to try gradually leading ourselves back to some of them.

– Change is hard. Especially with something like this. But remember that it doesn’t have to be either/or – either obsessed with autism, or completely cut off from it. We can find a healthy middle ground if we feel that is best. But again, if you feel it is right and beneficial to be so strongly focused on autism (or you just can’t help it!), there’s nothing inherently wrong with what you’re doing. You should not feel ashamed or guilty. Autism is a massive part of your identity. It’s who you are as a person. Additionally, it happens to be an issue requiring a lot of work to understand, accept and accommodate, both at the individual and societal levels. It’s a valuable thing to focus your energy on. At the end of the day, you shouldn’t let anyone dictate how much or how little you should focus on and invest in autism as an interest, identity and priority in your life.

#9

NEGATIVE                                          

SENSE OF ALIENATION

This point is in some ways related to the above one, because it is something that may result from an intense focus on autism or from “overplaying” the autism factor. There are two main factors surrounding a sense of alienation that I noticed in myself and that others might relate to as well.

a

First, now that I know for certain that I am different from others, this knowledge can sometimes serve to make me feel a bit shut out, whether in reality or just in terms of how I perceive things in my head. Most autistic people will have felt this sense of alienation before diagnosis as well, but having the definite knowledge will likely cement this sense of difference and, for some, this may not always be an entirely positive thing.

It can affect how you view the non-autistic majority. I occasionally have a tendency to “other” NT people a bit. When I hear about or watch an NT (for example on TV) I might think they’re being a certain way/doing a certain thing because of the fact they are NT and I might also think that whatever it is they’re doing may not work for me because I’m not NT, that I wouldn’t be able to cope with or enjoy the same things as them for whatever reason. It can make it difficult to relate to people’s experiences. It can lead me to assume that things will be different for me, that they won’t work in the same way, especially regarding “quintessentially” neurotypical things.

Sometimes I wonder whether knowledge of the difference could make me more inclined to self-doubt when it comes to my perception or understanding, or to worry about a potential breakdown in empathy in either direction. It can also sometimes be slightly scary to know and experience how the majority perspective is (understandably) so taken for granted. Autism, along with many forms of difference, are simply not on most people’s radar. When I am learning about something, there won’t be a caveat stating this information is presented by and for NT people and that it might not apply in to autistic people in quite the same way. Say I am reading a book that is explaining some aspect of human psychology or providing self-help tips. It will naturally be focused on and addressed to NTs without any realisation or statement that this is the case. The funny thing, of course, is that prior to my autism discovery I naturally assumed that all information everywhere applied as much to me as to any other person. It’s only post-diagnosis that I question this, remembering that I am part of a neurological minority that is not necessarily accounted for in universalistic information about human life. So, yes this can feel slightly alienating.

But this is entirely understandable. To suddenly find out the way you experience the world is not the universal way, can be quite something. No two experiences are the same, of course, including between NTs. Everyone is different. But some people are more different than others. This slight sense of alienation is also likely part of the reason why I am immersing myself in the autistic community, where my perspective and the perspective of those like me take centre stage.

b

This leads me onto the second point: Frustration, slight sadness and even occasional fear/uncertainty at a) not being able to live the majority experience and, moreover, b) not being able to know about the extent of the autistic/NT difference (in general, and for me personally), i.e. just how different is different? I find the latter point particularly frustrating, because it’s literally impossible for anyone to be in a position to find out. No one person can live both perspectives. I’m perfectly happy with the fact I experience the world differently, but this doesn’t mean I’m not curious to know what the alternative is like, especially when it is so ubiquitous. Sometimes I think it would be incredible to switch brains/realities with an NT for a day (and other autistic people, for that matter). I imagine I’d learn so much and it would likely help put my own differences in proper perspective. I find it can be so easy to forget the extent of my differences, or that I’m even different at all. To me, this is normal and it’s hard to imagine any other way of being. This is the case for NTs vis-à-vis autistics as well. We can all try hard to empathise, understand and listen to each other’s experiences, but ultimately we can never truly never know what the “other” side is like and it can be all too easy to take your own for granted.

POSITIVE

THERE ARE FAR MORE SIMILARITIES THAN DIFFERENCES. PLUS, THE ALL IMPORTANT DISCOVERY OF A NEW COMMUNITY

As much as it’s important not to overlook or underplay the differences that being autistic makes, it’s also vital not to lose sight of the many, many similarities that bind us all together as human beings. There are, in fact, far more commonalities than differences between all of us, including between neurotypical and neurodiverse people. We do all share core human abilities and desires, including things like empathy and the need for security, connection and sense of belonging. Some interesting things have been written about the connection between autism and being human (e.g. Dan Goodley’s chapter in Rethinking Autism). There are societal discourses and practices at play that are in danger of dehumanising autistic people, especially in the case of strong autism. It’s especially important that we work to overcome fundamentally flawed and dangerous ways of thinking that equate autism with something other than or less than fully human. Whilst autistic people are different, we are just as human as anyone else. Clearly, there are different ways of being human. The title of Dr. Barry Prizant’s book about autism sums it up well: Uniquely human.

Some have suggested that autistic traits can simply be viewed as representing extremes of the human experience. There is probably nothing that autistics experience that NTs don’t also experience. The difference lies with the intensity, frequency and duration of traits, along with their unique combination. Autistic experience is not outside of human experience. In a way, it’s simply a more intense version of being human. One a semi-related note, it’s important to remember that the environment surrounding an autistic person is of paramount importance. If it is conducive to that person’s needs (usually low stimulation levels) then that person will feel calm, well-regulated and be able to function at full capacity. Autistic difficulties like sensory overload and “challenging behaviour” won’t be an issue. I imagine that autistic people in such a state feel comfortable, natural, in their right mind, like themselves – perhaps much how an NT person feels when they are also well-regulated. It just takes more for an autistic person to be able to achieve this on a consistent basis (making it a rarer occurrence). This shows that autistics aren’t fundamentally flawed, incapable of achieving comfortable equilibrium in terms of stimulation. The issue is that we are extra sensitive to our environment and the world is not designed for us with this in mind.

Additionally, for those diagnosed with Asperger’s or who experience comparatively “mild” autism, the points of similarity with NTs are, of course, especially strong. If you are struggling with feelings of alienation it can also help to think about the millions of people in the world who are different from the norm in so many various ways. It’s by no means rare to feel alienated. Most “normal” people feel it to an extent at various times as well.

By far the best thing to do to counter these feelings is to engage with the autistic community. The opportunity to make connections with other autistic people, whether in real life or online is probably one of the best things to come out of autism discovery/diagnosis. So many people talk about the importance of finding your tribe in life. And now you have a defined and diverse group of people who share your perspective, who you can seek out, share with, learn from, offer advice and potentially develop lasting relationships with. Even if you don’t make any active efforts, merely knowing and thinking about the fact that there are so many others out there similar to you and who you can potentially connect with at any time so easily (especially online), is a great comfort.

#10

NEGATIVE                                          

WORRY ABOUT THE FUTURE

Worrying about what is yet to come and the inevitable occurrence of change and unpredictability is an extremely common, if not, core autistic trait. Ironically, as with many autistic traits, the stress and fear involved in dealing with change tends to be exacerbated during times of stress (often involving change itself) making it even harder to deal with change just when you need to be at your strongest. Diagnosis is often a major event in a person’s life and can trigger a whole host of changes, whether voluntary or involuntary. Yet the overwhelm many autistic people feel in the diagnostic/post-diagnostic stage can make change an even scarier prospect than ever and harder to deal with if and when it does happen. I should note that I’m talking about relatively big “life” changes here, not smaller-scale everyday changes that might occur in a daily routine. Another note – this section might seem a bit doom-and-gloom, but I think it’s also one of the most important sections, reflecting one of the biggest challenges people face post-diagnosis, and just generally in life.

There are perhaps two main areas to consider in relation to worrying about change in the post-diagnosis phase:

a – Worrying about the future because this is what a lot of autistic people (and people in general to varying degrees) tend to do. This may be exacerbated by experiencing stress, increased autistic traits and overwhelm from processing a diagnosis.

b – Worrying about your future now that you know you are autistic. Now that you have the knowledge, you might experience doubt, confusion and fear about what being autistic might or might not mean in terms of your future life.

I’ll focus here on point b: how the knowledge you are autistic might affect your relationship with change. There are perhaps two main aspects to consider within this. First, worry about the practical and emotional reality of living through actual change. Second, the impact of diagnosis on your psychological state and how this might be affected in terms of your confidence about facing the future and ability to initiate important changes.

On the whole, I am definitely much more scared about the future and the prospect of changing my current situation than I have ever been in my life. This is because of a mix of a) and b). Having the autism knowledge has made me both more and less scared about the future. But, overall, I am a lot more scared and this is in large part because of a): I seem to have become noticeably “more autistic” in recent years (for a variety of reasons) which seems to have affected by perceived (and perhaps actual) ability to initiate and deal with change (via the impact of increased sensory issues, anxiety, EDF, etc).

Having the knowledge I am autistic has also served to make me worry more about the future, in some of the following ways:

– Autism is a serious thing. The challenges it involves are real, significant and can often have a debilitating impact on a person’s life. Prior to being diagnosed, I suspected I was a little different to others and was certainty aware I had slight difficulties in some areas, but now I know the true extent of the difference (though this is still an area of confusion – see section x) and of the potential challenges I could be facing in future. Of course, it’s debatable whether this is a good or a bad thing, and every person’s reaction will be unique (see 12 for more on this is).

– Fear about the future can take the form of worrying that it may be harder for you to achieve certain things than it is for most, especially around milestones, achievements or life events, like employment, marriage, parenting or things like travelling abroad, attending big events, meeting new people, and so on. Of course, plenty of autistic people do all of these things and more with great success, but they can also be a struggle for many others as well.

– The autism knowledge has provided me with a clearer realisation that I probably need quite a specific set of criteria and circumstances in order to maximise my functioning and happiness. This includes around work, living environment and the amount/type of people I have around me. This applies to everyone, of course. But being on the spectrum, your needs might be quite specific. You might only be able to tolerate a very quiet living environment. Or you might need to be self-employed, working alone from the comfort of your home. It might be harder to find people you click with. Ultimately, it may be harder to find or achieve what you want, as well as to have your needs understood by those around you. (As a side note, if you harboured the belief or desire that you would one day magically feel “normal” or become able to cope in ways others seem to, a diagnosis can put these fantasies and hopes to bed. It can be quite common to experience this sort of future-related grief.)

– Then there’s the worry about the negative repercussions you could face (especially in terms of mental and emotional health) if you do struggle to get your needs met. This fear may be fed by the knowledge that many autistic people are indeed encountering difficulties in life and are more vulnerable across the board to things like unemployment, difficult relationships, poverty, bullying, abuse, trauma, loneliness, addiction, etc. Nobody is going to feel good if they fail to achieve what they set out, fall into difficult circumstances and can’t seem to fulfil their own or others expectations. But negative feelings and reactions can be heightened on the spectrum, or at least harder to manage and resolve, especially in the absence of appropriate support. Everything is more intense, so the lows can be especially low. Having to deal with unfortunate life circumstances can be especially hard on top of the basic sensory, social and executive functioning issues most of us live with as a matter of course. Moreover, experiencing negative circumstances and associated emotions will likely serve to intensify our more challenging autistic traits.

So, to sum up, what could be the psychological impact of knowing you are autistic in terms of confidence facing the future? It could go one of three ways (or perhaps a mix of the various ways at different times).

– Increased confidence vis-à-vis the prospect of future change. You may feel more ambitious than even and feel the need or urgency to push yourself harder than you would otherwise. It’s possible this could be fuelled by negative emotions such as anger or regret. If you feel you’ve already achieved a fair amount of success in life, you could well feel inspired to keep pushing further and harder, spurred on by the feeling that an autism diagnosis can only help you in your efforts. Some may also feel the need to prove themselves, even to make a positive example of their life. This could be principally for their own benefit or it could be to prove a point to others – that autistic people can achieve “normal” things, or great things. There can also be a danger of being overambitious, and potentially pushing yourself too far, although this is perhaps less likely assuming you’ve developed greater self-understanding post-diagnosis. See the positive section, just below, for more.

– No change in how you feel about and approach the future.

– Reduced confidence when contemplating the future and reduction in perceived and/or actual ability to initiate or cope with changes. Awareness of weaknesses, limitations and potential difficulties may become heighted in your consciousness. You may come to expect difficulties, affecting your state of mind, shaping expectations and potentially even leading to the creation of self-fulfilling prophecies. There’s the issue of using autism as an “excuse” (whether a “valid” one or not) even if only at a subconscious level. The expectations of those around you could shift as well. The result of all this could be an attitude that is perhaps too cautious and conservative, a lowering of expectations and reduced confidence to confront fears about doing certain things.

It can be confusing to think about what can or should be changed, to what extent, and how to go about it. Where do we draw the line between what we accept and embrace about ourselves and what we might want to change? Should we expect for expectations to be adjusted post diagnosis? In what direction? How are you supposed to know how much you can deal with (especially if this seems to fluctuate a lot over time depending on energy and sensitivity levels, recent events, etc.)? If you’ve become more fearful about making big changes is this because you now have a more realistic perspective – the right perspective – on what will likely work or not work for you? I know for myself that pre diagnosis I was perhaps a little naive and overambitious in some of my plans. Has my autism diagnosis helped me realign my expectations for the better, or am I now being overly cautious? These are all important and potentially confusing questions that will probably take time to work through. At least, being aware of potential issues around thinking about, initiating and dealing with change, is a good starting point.

I should add that it’s not just fear that is the issue when it comes to autism and change. There’s often a more fundamental mechanism that is at least partly responsible for the anxiety. A lot of autistic people find it really hard to think about the future. We can have issues with social imagination, making it hard to visualise what we want, to assess whether it is realistic, and to consider various possibilities and alternatives. Many of us also find it hard to plan, initiate and live through change because of executive dysfunction and an associated reliance on routine and need for sameness.

POSITIVE

Reasons to be hopeful about the future

The potential for positive change:

Following diagnosis, some people may experience increased confidence at the prospect of making changes. Diagnosis can serve as a great catalyst for positive change. For some, it can be the trigger they need, perhaps have been waiting for, to set in motion some much-needed changes in their life. Some may feel suddenly hopeful and excited about the potential difference that having a diagnosis could make. Having the autism knowledge can serve to increase self-understanding and awareness around your needs and preferences, hopefully increasing your ability to anticipate and perhaps avoid potential future difficulties. It can give you are a clearer perspective on what you might want or need in life. See section 11 for more on how an autism diagnosis can help when it comes to approaching the future with greater confidence.

Helping with the worry:

I don’t have much advice to give on this, because it’s something I’m still living through and struggling to deal with. All of this can be very confusing to work through and may take some time. I will say though, from experience, the longer you put off thinking about or making changes, the harder it seems to become!

To help inspire confidence about the future it can help to have a think about some of the positives you may already be working with (besides the benefits that an actual diagnosis can bring) as a basis for making further improvements in your life. This was partly covered in section x and basically comprises a list of all the thing you have to be grateful for or which are of help to you in your life. For me they include things like:

– A positive upbringing

– Loving and supportive family

– Having avoided many of the negative experiences commonly experienced by autistic people, e.g. bullying, mental health issues, difficulties at school, behavioural problems.

– Certain personality traits – e.g. conscientious, introspective, critical, hardworking, focused, resilient.

– Certain strengths and abilities

– Certain ways of being intelligent (there are many different ways for everyone)

– Strong morals and values

– Having had quite a few varied and interesting life experiences – moving around a fair amount, completing two uni degrees, and travelling abroad (including to some exotic and unlikely places for relatively long periods). Having coped pretty well up to now, avoiding any major incidents (even if only out of sheer luck at times!)

– Being female? It’s perhaps interesting to consider the impact of gender on being autistic. In some ways it can be easier for female autistics, but in other ways definitely not.

Making your own list could be a good place to start when it comes to building confidence about the future and your ability to make the changes you want to.

#11

NEGATIVE                                          

DOUBTING THE POWER OF KNOWING YOU ARE AUTISTIC

Following on from point 10 (potential confusion around just how important an autism diagnosis actually is), there can also be some doubt and disillusionment surrounding the value of having the knowledge in the first place. How much difference does it, or can it, really make?

Especially in cases where there seems to be little post-diagnosis support in place (often the case for adults), it can be easy to doubt the value of the process and the knowledge you’ve acquired. Perhaps you harboured high hopes that things would magically improve through getting a diagnosis. It’s understandable to think that a diagnosis will help, but sometimes we can have overly high expectations. The post-diagnosis period may be experienced as quite anti-climactic in some ways. People may not react how you were expecting them to (they may even express doubt about the diagnosis). There may not be any suitable services – therapists, support groups, etc. – available in your area or any clear way forward.

Above all, simply knowing you are autistic in itself is not really going to change anything in actual concrete terms. The difficulties associated with autism are real and often intrinsic. Simply knowing about them isn’t going to make them go away. Even if you take the time to understand your challenges and put in place appropriate coping strategies, this doesn’t necessarily guarantee improvement. It can be a time of feeling a little confused, lost and even abandoned if no immediate support or obvious pathway presents itself.

It’s usually the case that changes don’t happen magically, at least not big changes or positive changes of the sort we really want to see (in terms of living situation, relationships, work, finance, health etc.). We need to actually do things to make them happen. This is often  hard, for anyone, but especially for autistic people potentially struggling with issues around anxiety, social imagination and executive dysfunction. Following a diagnosis, we may or may not be presented with opportunities to help us work towards any changes we feel we want. If we are, then we need to be proactive about pursuing them. If not, then of course it’s even harder, and we need to make our own concerted efforts to work towards where we want to be. This can be a hard thing to do if we are feeling overwhelmed by the whole diagnostic process and its aftermath.

POSITIVE

KNOWLEDGE IS POWER

There are perhaps two main points that point to the power of autism discovery and diagnosis. First, diagnosis is very often an essential starting point for all sorts of potentially positive concrete changes to occur – it may just take a lot of time and energy to arrive at them. Second, the psychoemotional changes can be very great and beneficial, though these can easily be overlooked by yourself and others.

True, the power of knowledge in and of itself is limited. But it is also an essential starting point, a crucial building block for what (hopefully) comes next: understanding, accommodation, acceptance, growth, fulfilment. Without knowledge, then none of these things are really possible. At the very least, lacking knowledge makes these things harder to achieve and a lot more subject to chance.

It’s important to remember that diagnosis is only really the beginning of the journey (though it may not feel like it by this point!). It is of pivotal importance, but by no means an end point. We should take the long view and remember that big, important changes can take months, if not years to unfold. Change is often incremental and certain changes (especially in terms of how we are feeling) can happen without us even really noticing. It takes most people a long time to figure their lives out, many never quite manage to get there. We shouldn’t rush ourselves, especially if we are feeling sensitive, vulnerable, overwhelmed or fearful about the prospect of change. Try not to be led by a sense of urgency (unless it seems right to do so) and give yourself the time you need. This will reduce stress and probably maximises the chances of making the right decisions about the future.

Even if some of the more concrete changes you hope to experience aren’t yet unfolding in your life, there are very often important and often positive internal changes that emerge post-diagnosis (though these too may take time, depending on the individual). Moreover, it is these that will then form the basis for more of the “real”, external, observable change that might unfold later. I’ve already mentioned a lot of these more abstract shifts in thoughts and emotions throughout this blog series. To sum up what I think are the three main ones:

– Self-understanding – Being able to accurately describe and, all importantly, explain why you are how you are is foundational. Developing increased self-awareness and understanding puts you in a better position to make sense of your past and present, perhaps helping to work past emotions like regret and shame, replacing them with relief, validation, even pride. It also enables you to better identify your strengths and weaknesses, along with your needs, preferences and desires, resulting in a stronger sense of who you are as a person.

– Understanding from others – The people and environment that surround us are of crucial importance, especially for autistic people who are so sensitive to these things. If the people around us display understanding, acceptance and appreciation, working with us to adapt interactions and the environment according to our needs, this makes a huge difference. It’s simply crucial in determining outcomes.

– Empowerment – When you combine the above two factors hopefully what you get is empowerment: the ability to successfully identify, pursue and enact a range of self-determined changes, and to be supported in your efforts by those around you. Whilst none of us can have total control over our lives, empowerment entails having the knowledge about ourselves and others to more accurately assess the potential outcomes of various options, as well as the resources to shape our own life accordingly.

#12

NEGATIVE                                          

REGRET AT NOT KNOWING EARLIER

This one is for all the late diagnosed autistic people out there. Many of us experience feelings of regret, resentment, even anger at the fact our autism was not identified earlier. This might be directed at ourselves (for perhaps not having taken our issues seriously enough, or done enough to find out more or seek advice), but more likely it will be directed towards various professionals (especially if they were specialists who misdiagnosed who really should have known better), and perhaps at our parents for not picking up or acting on early signs. There can be a strong feeling that life would have been better if you’d known earlier and a tendency towards blaming yourself and other people, especially, for not having picked up the signs earlier.

In my own case, prior to being diagnosed, I’d never seen any sort of medical professional besides my GP and never about mental health issues or really anything that could have potentially been linked to autism. So blaming professionals doesn’t factor in for me. I did, though, feel a little resentful towards my parents after they told me that they’d vaguely speculated I might be on the spectrum when I was in my late teens/early twenties. But it’s not easy to be properly annoyed at them for this. They clearly didn’t have enough reason to take the possibility seriously. If there had been significant issues that were more outwardly visible, I’m sure they would have taken action to broach the subject with me or to approach professionals. More generally, I do feel a bit of regret that we never really talked about some of the social issues I was experiencing. Perhaps because I hid them quite well (even from myself?), or because they didn’t really see my withdrawn nature as a major issue (they are a lot like me in many ways), or simply assuming I would outgrow it with time. It probably would have been a good idea if we’d opened up more and my Mum did later acknowledge that it was a mistake not to have done so.

One very common reaction post-diagnosis is to wonder what your life might have looked like if you’d found out earlier. Would my life by any different? How different exactly and in what ways? Would things have been better, or perhaps worse? It’s all too easy to let your mind be plagued by all the possible counterfactuals, especially in relation to negative experiences that might have been avoided or handled better with the autism knowledge.

Potential benefits of an earlier diagnosis and reasons for regret might include:

– Greater self-understanding, potentially helping to alleviate feelings such as confusion, shame and self-blame. Perhaps better self-esteem and confidence as a result, as well as a greater awareness and appreciation of your strengths and abilities.

– Potentially avoiding mental health difficulties, or at least being better positioned to get appropriate support.

– Opportunities to clearly identify and thus potentially work on improving or seeking help with areas of difficulty, such as social skills.

– Sense of identity and community. Opportunities to learn from and connect with other autistic people.

– Increased understanding from others, including family, teachers, lecturers at university, employers, colleagues, potential friends, even strangers.

– Better decision-making based on greater understanding of your needs and preferences, and potentially avoiding negative experiences around work, environment, relationships, etc as a result. Examples for myself include: I would not have set off on a volunteer project with a group of 20+ people as part of my gap year. I would have made a career choice purposefully designed around seeking a conducive work environment, possibly in an area where it’s easy to be self-employed, or around a special interest. I would have been more aware of my need for a quiet, calm living environment.

Overall, I feel that regret is a fairly strong emotion in me. Like most people, I think I would have benefited from an earlier diagnosis. But, interestingly, not too early. I don’t think much would have changed if I’d been diagnosed at primary school (this would have been pretty unlikely anyway in the 1990s, and even if I was primary-school age today I think I would have still slipped through the net). If I could pick an ideal time for me it would be in my mid to late teens, perhaps around 17 or 18. I was starting to become more socially isolated from my peers around this time. This is a crucial period in a person’s life and I think having the knowledge would have set me up well before taking a gap year and going on to university (presuming I would have still chosen to do these things). I also think I was mature enough at this age to have been able to deal with diagnosis fairly well (though perhaps not as well as I have now, in my late twenties).

POSITIVE

POTENTIAL DRAWBACKS TO EARLY DIAGNOSIS. PLUS, GRATITUDE TO HAVE FOUND OUT NOW AT LEAST.

Try to feel grateful that you’ve at least found out now. Some people don’t find out until really, really late, in their 50s, 60s and beyond. Plenty of people never find out at all. Think of all the autistic people of the past who lived before autism was even a recognised concept. Or the millions of people around the world, especially in developing countries, who will never have access to the knowledge or expertise that could ever lead to a diagnosis. Whilst it should be our right to have access to diagnosis and self-knowledge, these things also clearly need to be viewed as privileges when you look at the bigger picture. Not every place has adult diagnostic services, even in the UK or US. Not every professional will understand autism in its diverse presentations or be willing to diagnose it. For others, there can be significant financial or personal barriers to pursuing a diagnosis. So try to feel grateful that you do have a diagnosis now at least. You may also feel a sense of pride and accomplishment… at having gone through the process and opened up about sensitive topics to various professionals or people in your life…. at having been right about yourself… at the fact you are autistic!

There is a virtually unquestioned assumption in autism circles that early diagnosis and intervention is always better. This may well be the case. But there are some who argue otherwise (I’d recommend the book Rethinking Autism for more on this), as well as those emphasising the power of neuroplasticity and the notion that development truly is life-long. There are also potential drawbacks that can result from a diagnosis, perhaps especially at a young age. Of course, outcomes will depend to a large extent on the circumstances around the individual, how others react and the appropriateness of the support they receive.

Potential negatives of (early) diagnosis include:

– The autism label still carries with it a degree of stigma. While a diagnosis provides an explanation that can help prevent bullying and foster tolerance, it can also do the very opposite, serving as fuel for bullies to target or exclude the autistic person.

– There is the potential for feeling defined and perhaps limited by an autism diagnosis, including both in terms of how you view yourself and how others view you. The shaping of expectations can be a big thing. Your own expectations of yourself might change. Knowing you are autistic, you might not have thrown yourself into certain situations, including things that turned out positively. Others may lower their expectations of what you can achieve. All this can be entirely inadvertent and well-intentioned. It can be almost instinctual, stemming from an understandable desire to want to protect the person.

– You might have experienced some of the negative emotion that can be directly linked to knowing you are autistic (though these are often experience by the undiagnosed too, just in a different way), including sadness, sense of alienation and worry about the future.

– Disclosure can sometimes be a tricky issue to deal with.

– Some help can be unhelpful, even damaging. Just take a look at some of the negative accounts of ABA by autistic adults who have undergone such “treatment”. Not all professionals understand autistic people or know how best to help us. Others are simply overworked and under resourced.

– Your sense of self will not have been defined by autism. This could have both good and bad effects. On the positive side, it means you are not at risk of internalising the negative (and often inaccurate) discourse around autism, relating to disorder, deficits, functioning labels, or worse, disease, epidemic, tragedy, etc. You might not have even recognised yourself as being that different from others. For myself, I still often forget that I am actually quite different from other people, that I am in a neurological minority, that I am on a distinct developmental pathway and technically considered disabled. Whether this is a good thing or not, it clearly stems from the fact I spent well over two decades living without thinking any of these things about myself and habits die hard.

– Being late diagnosed means there’s a good chance you actively went out to seek a diagnosis. In some ways this is perhaps better than a diagnosis being imposed on you whether or not you want it or are ready for it. It means you have more control over what is happening to you. If you go out looking for a diagnosis, it means you are pretty much choosing to identify with autism, that you perhaps want to embrace it, or at least that you are ready to hear it.

A few other points that may help with feelings of regret:

Remember that having a diagnosis isn’t necessarily as powerful as you might think. After all, it is only a word, a label, a concept. Whilst it can be extremely helpful, it doesn’t change who you are, what you struggle with or necessarily even enable you to change certain things you might want to.

Another factor that applied to me, and which might apply to others as well… Being quite an introspective person, I already had a pretty good understanding of my personality, strengths, weaknesses and needs and had accepted these facts about myself. Diagnosis certainly helped a lot, but it didn’t give me with a huge amount of new information about who I am as a person. What it did provide, of course, was an explanation, validation and potential ways to help. Diagnosis might be less of a revelation for those who already have good levels of self-understanding. You don’t need an autism diagnosis to be able to realise a lot of stuff about yourself and what you might want – a thought which may help reduce feelings of regret.

If you’ve been lucky enough to avoid too many struggles growing up undiagnosed, then your sense of regret will be greatly reduced compared to someone who clearly would have benefited from the knowledge. If you have managed to avoid accumulating too many regrets, try to be thankful about this. Equally, if you feel you’ve achieved a good amount of success in life then you should definitely take pride in this. Not from the perspective that you are autistic so achieving things is harder and therefore more worthy of praise than it would be for an NT (which is sliding into inspiration porn), but from the perspective of being undiagnosed and therefore potentially confused and unsupported.

Think about the benefits of finding out when you did. Perhaps it was at a really useful time in your life such as an important cross-roads where you needed to make a major decision. Perhaps it helped improve a relationship or a work situation at just the right time. If nothing else, being older means having greater levels of intellectual and emotional maturity to process the diagnosis in a healthy and useful way. I think my age played a positive role in how I have reacted to my diagnosis. I’m not sure it would have been quite the same if I’d been younger, especially if it had been before the internet with all the information and support that is available now via the online autism/autistic community.

Overall, I’d say it’s pretty likely that your life would have been different, perhaps dramatically so, if you’d been diagnosed earlier. But I don’t think you could say it would have been any better. Life is often so random, the tiniest thing can end up having a monumental impact. It’s impossible to predict how things might have been different. Definitely give yourself plenty of time to process feelings of regret. This might also be a good way of learning valuable lessons for the future. Ultimately, though, we can only live in the present, and we only have the power to influence the future. Redirecting our attention here, to living in and appreciating the present and working towards a future we desire – is really all we can do.