Part 11: Into the Unknown

Hello, and welcome back to The Autistic Writer. Thank you for coming back. It’s a tricky time, with so much uncertainty around us. The UK is now in lockdown to try and drive down the rate of Covid-19 infections. In the US, votes are still being counted in the Presidential election, but early indications are Biden will win, and Donald Trump’s time in the White House is to end. America is such a powerhouse of influence in global politics, economy and culture that any change of President is likely to bring worry and uncertainty along with optimism that things might improve.

Most of the last seven days has, for me, been about things happening externally. My life has resumed a strict routine since being back at work, which I find comforting, as routine reduces my sense of anxiety. The really interesting stuff has been happening in politics, the pandemic, sport, and so on; the external world. So it fits quite well that in today’s blog, I will be featuring the thoughts of someone other than myself…

This week:

Aberrations: A progress update on my current novel.

The Aut Life: How I am managing my mental health, how I am coming to terms with knowing I am autistic. Plus, this week a look at one particular portrayal of an autistic character in popular media.

The Aut Files: Something different this time. I was contacted recently by a young man, who wishes to remain anonymous. We will call him Adam. He has recently begun to suspect he is autistic, and his thoughts remind me so much of the uncertainty, worry, and sense of stepping into the unknown that I felt when I was waiting for my autism assessment. Adam has agreed to an interview, giving us an extremely candid insight into the thoughts of someone who has lived all his life not knowing he is autistic, and is now having to reassess everything he knows about himself, and face up to the worries that come with an impending diagnosis of autism spectrum disorder. I found his thoughts and feelings both moving and familiar, and it’s my hope that anyone reading this interview who is in that position of thinking I might be autistic, and why do I think and feel this way? will see that they are not alone.


Aberrations

I hit a couple of snags this week on the novel, and I should have seen one of them coming. A fairly significant continuity issue emerged in the story. I can solve it, no problem – it’s largely to do with one of the locations. The error has happened because of the long hiatus I had when work on the novel stopped as my mental health hit an all-time low, and I told the world I had retired from writing. At that low point, I could not envisage myself ever writing again. Years later, with an autism diagnosis in the bag, and my life levelling out again, here I am. With that huge pause in the project, it was inevitable that I would make a mistake at some point. Fortunately, I can just go back and rewrite the two erroneous chapters. This is the writer’s life!

The other problem I hit was one particular chapter in which I just felt the words were not flowing. I knew what I wanted to describe, but whatever I typed didn’t feel authentic in some way. So I did the pragmatic thing, and wrote the chapter anyway, knowing that I can go back and perfect it in the second and third drafts. Onward!

In total, I wrote 3,926 words this week. I have completed chapter 44, and started chapter 45. The plot is accelerating towards the climax now, and I’m very excited by it.


The Aut Life

I am now in my second week of taking anti-depressants to combat my anxiety. It’s still early days, but I feel there has been a beneficial effect; a tailing-off of severity of symptoms at times. Furthermore, by changing the time of day I take the meds, I have staved off an unfortunate side-effect. There are times, still, when I feel incredibly low. The sense of being trapped in the wrong world often arises. In fact, it could be said that the more I learn about autism, and the person I really am, the more profound that sense becomes.

I am still doing things that I know are good for me: reading, writing, and going for walks. Pleasantly, I have lost some weight. This is good news for me, as so much of my sense of wellbeing is tied up in my physical self-image.

This week, I’ve been coming across a lot of questions, comments and discussions online about the portrayal of autistic characters in popular media. It’s an issue that interests me, and something that I’m going to look at in great detail in the future.

My current and recent reads are overlapping with this subject. I haven’t quite finished the audiobook of Andrew Sacks’s An Anthropologist on Mars, a collection of case histories of various people with neurological challenges that have made their lives extraordinary. Andrew Sacks is the neurologist and author perhaps most famous for his book The Man Who Mistook His Wife for a Hat. The last section of An Anthropologist on Mars considers a number of cases of autism. The book was published in 1995, and I’m going to give Sacks the benefit of the doubt and say that the book is a product of its time. The 1990’s were not great for autism, particularly as this decade saw the rise of Andrew Wakefield’s scandalous vaccine claims. Some of the language used by Sacks in this book to describe autistic people is, in my opinion, disgraceful, and would not be tolerated if published for the first time today. I’ll probably talk about this more when I’ve finished the book.

But for now, as promised last week, I want to talk about Stephen King’s book from the 90’s, The Regulators. I wouldn’t recommend this old book to anyone, but on the offchance that you might decide to have a look at it out of some morbid interest, I’ll do the obligatory thing: Major spoiler alert.

Still with me? Good.

The Regulators was published in 1996, under King’s then supposedly-defunct pseudonym Richard Bachman. It is a kind of companion novel to King’s Desperation. Both novels feature many of the same characters, but in alternate-universe renditions, in their attempts to defeat the demonic monster, Tak.

In The Regulators, the action takes place mainly on one street of a small town, in which several residents are slaughtered by what turns out to be giant versions of children’s toys. Yes, you read that correctly. Aside from the pervasive daftness of the story, and a quality of writing far, far, below Stephen King’s usual high standards, the real problem in the story is the character of Seth Garin; an eight-year-old autistic boy.

Seth Garin is possessed by the entity Tak, a being who is evil, who feeds on pain and suffering, and who has bizarre psionic powers which can change reality. There are many troubling aspects to the relationship between the boy and the monster Tak, and to how King presents the autistic nature of Seth.

The boy is non-verbal, a picky eater, and has obsessive interests. So far, so cliché. It is hinted in the story, although not stated outright, that Seth was complicit in becoming possessed by Tak, and that part of him is complicit in some of the terrible acts carried out under Tak’s influence. What part of Seth would that be, the complicit part, do you think? The answer to that is revealed when Seth uses his own telepathic powers (IE, not powers granted by Tak, but abilities which, we are left to assume, are generated by Seth’s “extraordinary” autistic mind). When Seth communicates with his beloved aunt using telepathy, he is suddenly not autistic; he is highly verbal, intelligent, compassionate, and eager to plan the downfall of Tak. Clearly it is the autism, not the boy, that is the problem. This promotes two really harmful cliched views of autism: one is that autism automatically confers some kind of special or savant ability. The second, more dangerous, is the idea that a “normal” child lurks within the autistic child; an erroneous view that has helped fuel the quack industry of fake autism cures and therapies.

Did Stephen King intend the portrayal of Seth to be so insulting to autistic people? I doubt it. King seems like a really nice person, a genuine guy who has suffered real problems in his own life. But it doesn’t matter whether he intended it. One of the most valuable lessons I’ve learned as a writer is that once you write something and put it out there in the world, people are free to interpret it as they want. And they will. And those interpretations will be valid, because that’s how it works. You have to exert huge control and discipline over your written work to try to offset potentially harmful interpretations. King has been known to do thorough research for his books (I’m thinking in particular of From a Buick 8), and this inept portrayal of autism in The Regulators should stand as a warning to people who try to write about things they don’t understand, especially the wider social implications of subjects they cover.

I would be extremely interested to hear from anyone with thoughts about other autistic characters they have come across in popular media.


The Aut Files

Here is the revealing and thought provoking interview with Adam (not his real name), a young man with mental health issues, who is now facing up to an impending autism assessment and potential diagnosis:

Thank you for agreeing to this interview.  To start with, could you just tell us a little bit about yourself, your background and lifestyle, and so on.  I understand you want to remain anonymous at this time, so it’s fine to be vague when you need to be. 

You’re welcome.  I’ve not really “come out” so to speak, and I’m still trying to process the possibility that I might be autistic, and that’s why I’d rather remain anonymous for the time being.  I’m male, in my thirties and work in a professional setting where I deal with different people on a day to day basis.  I am probably what you would call “middle class” and earn above the average UK wage.  I am definitely introverted; people have called me shy in the past but that’s not the case.  People generally annoy me and I quite enjoy my own company.  No, I don’t think that’s quite right.  It’s not that people annoy me, it’s more that what I perceive as illogical, emotional and irrational behaviour annoys me.  Loud, extroverted people annoy me; the type of people that would be called “personalities” annoy me.  I’m not what you would call a people person.  I tend not to make a good first impression and most people who are aware of me, but don’t know me, don’t tend to like me.  However, I’ve found that once I start to interact more with people and work with them, I tend to be well liked.  There have been many times when people have said to me some variation of, “I always thought you were an asshole, but you’re actually a nice guy.”

Is being liked by other people important to you, or is it more of an incidental?

It depends on the context.  I would like to have more people I could call “friends” but my lack of friends is not because I’m unlikable, I don’t think.  I think it’s more an issue around social anxiety and not understanding what being a normal person is, if that makes sense? A lot of the time when I’m interacting with people, I feel like I’m acting out a part, like, this is how I think normal people behave.  In my job, I’m not that bothered about being liked as I don’t really have to interact that much with my peers.  

When did you first become aware of autism, and what were your thoughts about it before your recent suspicions that you might be autistic?

I can’t say when I first heard of autism.  It would have been a long time ago and I’m guessing it was probably through fiction.  It might even have been through the film Rain Man.  I’d always thought that autistics were non-functional, as in they could not operate in the world without intense social support.  I was not aware that autism was a vast array of different symptoms muddled together in different intensities.  I was not aware, as the quote goes, that if you meet one autistic, you’ve simply met one autistic.  I thought it was a very precise diagnosis for a very specific condition.  As I went through school I studied psychology and learned a little more about autism and Asperger’s.  Even then, I still had little idea what autism was.  I knew of “the spectrum” but I thought that the spectrum was a continuum of severity, i.e. that people with autism were on different points of the spectrum depending on the severity of their symptoms.  I’ve since discovered this is not the case.

What does spectrum mean to you in relation to autism now?

It’s a range of behaviours and symptoms that come under the umbrella of autism.  Autistics can experience any combination of these behaviours and symptoms in any variation of severity.  I don’t think this point has been made clearly enough for it to sink into public awareness yet.  

Can you describe your current mental health situation, and explain what you feel has led you to your current mental health status.

My current mental health is not good.  Possibly the worst it has ever been.  I’ve had a tough year both with my physical and mental health, and the two impact on each other.  It’s been quite possibly the worst twelve months of my life.  I’m in a state of deep, long-term depression and anxiety.  My obsessive thought pattern, linked with my depression is like a form of torture that is constant.  I can’t escape it.  Sometimes I can turn the volume down by distracting myself with music, audiobooks or TV.  I’ve found that I can’t read anymore though, as I just can’t seem to engage that part of my brain.  My problems really started when I discovered I had been cheated on by my long-term partner.  It was a long-running affair and caused me to question everything that has happened in the past year.  This was the final straw that broke me mentally.  I was not great before that, due to spending a long time on crutches and in the worst physical pain I’ve ever experienced.  Then, the impact of finding out I’d been cheated on just broke me.  I can’t describe it any other way.

At what stage did you begin to suspect you might be autistic?  How did that feel, and how did your thoughts progress as you considered it?

I listen to a lot of audiobooks and I read a lot of blogs.  I came across your blog and saw that you had mentioned a book; Neurotribes.  It sounded interesting and I downloaded the book on Audible.  Listening to the stories of autistic children and their experiences and development caused quite a few “penny drop” moments.  It caused me to look back at my own childhood through a different filter.  It really opened my eyes and made me question a lot of my own past.  I looked at my parents and grandparents and saw that there was a very real possibility that undiagnosed autism may have run in my family.  This could just be learned behaviour, but I doubt it.  I know how I feel and it’s something that I’m not able to control.  I’ve always felt a little different to everyone else.  It’s like I remember things, little details.  I’ve always been able to join the dots together in a different way to most people.  It’s alienated me many times when I can’t let a subject drop, and when I catch people in little white lies.  Discrepancies have always bugged me and whilst most people either don’t notice these discrepancies or are able to just let the matter drop, I can’t.  It’s like I’m living life in a different state of awareness to most people; not better or worse, just different.  

In terms of how I felt… It hasn’t really affected me too much to be honest.  If anything, it’s been a relief to finally have an answer to why I’ve always felt like a fish out of water, and why I’ve always felt that this life is a little off.  I have only told four people so far that I might be autistic; my parents, partner and a friend who has struggled for a long time with mental health.  When I told her, she said that she thinks I might well be autistic.  She wasn’t insulting or mocking, but she just felt that I could be.  I don’t want it to become public knowledge.  The way I see it, is that it’s not anyone else’s business.  Also, most people are not educated enough to understand what autism is.  There is also some cowardice here.  I’m afraid of what people might think.  I don’t have the mental resilience, with everything else that has happened in the past year, to cope with “coming out”.

How pivotal was your recent mental health crisis in bringing you to a realisation that you are autistic?  If it had not happened, do you think you would have still arrived at this realisation at some point?  

I don’t know.  There are a lot of things in my past that seemed to have happened by accident, such as my career path.  I’ve never felt “normal”, but at the same time I’ve never felt how someone else feels, as feelings are internal and the moment anyone tries to explain their feelings, something, some meaning, is lost.  I don’t know if I would have arrived at the autistic conclusion had I not stumbled across your blog, and then read Neurotribes, and subsequently researched the topic more.  I think my mental health crisis highlighted many of the problems autistic people struggle with daily.  I often feel mentally exhausted from masking my inner turmoil on a day to day basis from those around me.  It takes a lot of mental energy to keep up the facade.  This crisis reduced the resources I had available to cope, and so brought all my mental health problems to the fore.  

What have you done to assess for yourself your likelihood of being autistic? For example, online tests. 

I’ve spoken with the GP, who referred me to a website… helpful.  I’ve done a few online assessments and they’ve all come back suggesting that I am autistic.

Are you pursuing a full diagnosis?    

Yes, for what it’s worth.  I’m not sure how much a difference it will make.  It may provide me with some protection from a discrimination and harrassment perspective, but I’m not putting my life on hold pending a diagnosis. 

Are you aware of conditions co-morbid with autism, and have any of these affected you?

This is actually something else that has made me feel a little sense of relief.  I’ve suffered for a long time with a number of physical health problems.  I’ve thought for a while now that there must be something linking them all together, but all the tests from different specialists have not yielded any answers.  Then, I found out that autism is linked to a vast array of different conditions.  I’ve experienced the following; anxiety, IBS, depression, developmental coordination (I was hopeless at throwing and catching when younger), OCD, OCPD, sleep disorders, tinnitus, vitamin D deficiency, and a few others I don’t feel comfortable talking about even anonymously.  

What do you believe are the effects on your life of having grown up and moved into adulthood as an undiagnosed autistic person?

It has cost me a lot of friendships.  It has impacted on my ability to have a healthy social life from being a child all the way through my teenage and young adult years. 

It’s interesting you refer to ‘it’.  Do you see autism as something attached to you that affects you, or do you see yourself as autistic, with the term autism being a convenient term society can use to differentiate you from neurotypical people?

Does it matter? I mean, a spade is a spade.  I’ve never thought about the question, but thinking about it now, I suppose autism is part of my identity rather than being something external that affects me like a wound or other type of physical injury.  I think autism is a somewhat clumsy term as it refers to such a wide variety of symptoms, behaviours and severities.  I think that many, many people would benefit from a more precise classification system but I think the logistics of creating such a system would be prohibitive in terms of time and money.  The difficult thing for a lot of uninformed people to grasp is that you can have two autistic people, and one of them might be completely unable to live without round the clock assistance and the other might own their own business and be successful, if slightly socially awkward.  It’s such a vague, and I say again clumsy, diagnosis.  

Have any health problems associated with autism affected your career? How?

I have often been seen as outspoken in the workplace for “telling it like it is” and not being able to “play the game” of office politics.  I believe this is a result of my social awkwardness due to my suspected autism.

You’ve talked about some of the physical  co-morbidities that you have struggled with.  Have these held you back professionally or socially in any way?

I think so.  I think my anxiety and OCD really impacted a lot of my friendships.  I would be paranoid that I was not liked, and that people were mocking me.  I was paranoid and jealous in romantic relationships.  Trust has been a major, major problem for me. 

Does knowing that your autistic neural makeup is driving those feelings make it any easier to deal with them and move past them? 

This is the thing, the brain works on an emotional level and rational level. Sometimes knowing something doesn’t help how you feel.  For example, if I jump off a ledge and break my leg, I know what the cause was. It doesn’t lessen the pain though. It’s a similar thing with emotions.  The emotions can then hold you back from taking practical steps to deal with the situation rationally. 

How do you think being an undiagnosed autistic person has affected your various relationships in life?

I’ve found it difficult to maintain any friendship.  Throughout my life I’ve had a number of close friends; people I’ve cared deeply about and been very close to for a number of years.  However, those friendships have always just faded away.  

Considering the difficulties you have had maintaining relationships, did that make the problems in your one really intimate relationship even more difficult for you to deal with?

In some ways.  I’ve had a real hard time accepting my new reality, and accepting that what I thought was my reality over the past few months was not actually what happened.  Trusting and believing my partner is very, very difficult.  

Do you believe that being autistic has brought you any benefits in life? 

At times, I think it has.  I’ve got a way of thinking and analysing situations and data that I think is the result of my suspected autism.  

If you could live the last twenty years over, knowing about your autism, how would your life have been different?

It’s a tough question.  I think with the right support, I would be happier.  I’d have a better social life. 

What kind of support do you wish you could have had? 

I have no idea.  I don’t know what kind of support would have been helpful.  I think just knowing what I had, and that there was a root cause for a lot of what I was experiencing, would have been helpful.  So, I don’t know what practical support would have helped, but I think the awareness would have. 

If someone offered you an instant cure for autism, would you take it?

It’s a tough question.  I don’t know how much my autism has affected my life.  Without autism, would I have had the drive to escape my working class background and be, on the surface, successful?  I don’t know.  I would probably say no.  However, if I could go back twenty years and be cured, having the same achievements? Sure.  

If you are officially diagnosed as autistic,  how do you see this affecting your future? What does the next five years look like? 

I don’t think it would make much difference.  It wouldn’t change who I am.  It would probably offer me more protection from an employment point of view when it comes to workplace adjustments, harassment and time off work due to health.  Who knows what the future holds. 

Would you be happy to be interviewed here again after your assessment and potential diagnosis? 

Yes, that would be good.

Is there anything else you’d like to say regarding your experience of approaching autism?

One thing that I’ve thought about a lot, but I’ve only ever discussed this with one person… It’s a difficult thing to explain though.  It relates to death and emotion.  I’ve experienced a few bereavements in the past few years.  The people I’ve lost, I miss dearly.  But when it came to grieving, I felt numb.  I knew what I should be feeling, but I didn’t feel it.  It’s a difficult thing to explain, and it’s almost like the idea of playing a part or masking.  I know what the socially acceptable thing to do is; it’s to be sombre, and polite, and sad, and so on.  But I generally find these things inconvenient, and I don’t know why I don’t feel what other people say they feel.  It feels as though the part of my brain that deals with those types of emotions is missing, or turned off, or something.  I don’t know if this makes sense.  I’m not devoid of empathy; I’m capable of experiencing empathy because I’ve felt it before.  It’s a strange thing and I’m not sure I’ve explained it very well…?

Would you perhaps say that overt expressions of emotion, whether of grief or anything else, lack purpose, and so have no logical value?  You feel grief, but not the urge to make an emotional display?  I don’t want to put words in your mouth.  

Yeah, I think that’s part of it. I don’t believe in an afterlife or anything like that. When someone is gone, they’re gone. It’s said that funerals are for those left behind and not the deceased.  There seems to be an increasing trend for people to advertise their grief and whoever grieves loudest and longest is somehow a better person. I don’t know, it just seems like grief is a private thing, at least for me. Saying goodbye when someone is already dead achieves nothing. 

Thank you so much for taking the time to answer these questions so candidly, and I wish you the very best for the future. 

Thank you for the chance to open up about this, even anonymously.  All the best.


That’s all for this time. Thank you again to Adam for his thoughts. Have a great week, and be kind to yourselves.


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