Part 3: What is the Spectrum?

Hello, and welcome back to The Autistic Writer.

I hope you’ve all had a good week. I’m reasonably content with the progress I’ve made over the last seven days. The writing is progressing nicely, and on all but one day, I’ve made myself go outdoors for a walk. It’s really important I do that, as I’ve had to take a some time away from my day job due to my mental health not yet being right. It’s healthy for me to be active.

I am brittle – which is not the same as being weak. The point of being brittle is that no matter how strong you are, when you are put under unbearable pressure, there is a breakage. Some people have a different type of mental strength; instead of being brittle they are squashable, and can bounce back, like when you squeeze a foam ball in your fist and when you let go, it springs perfectly back into shape. I can’t do that. I have to spend some time getting glued back together.

But I’ve got positive things to say about the progress of my novel, and some observations about the subject of the autism spectrum.

However, before do anything else, I feel like I’ve got to mention the horrible plight of Linden Cameron.

Linden is a 13-year-old autistic boy who lives in Salt Lake City, USA. Last Friday, he had an anxiety episode, and his mother called 911 for help. Police officers attended the scene, and shot the unarmed boy repeatedly. He is in hospital with serious multiple injuries to internal organs and limbs. I don’t really have the words to express my shock and disgust. I remember being manhandled as a 12-year-old by someone who had been called to help me when I was struggling. That was frightening and distressing. But being shot by police… I can’t even imagine. I am chilled to the core by what’s happened to Linden. You can read the Washington Post report here:

https://www.washingtonpost.com/nation/2020/09/08/linden-cameron-utah-autistic-shooting/

Aberrations

It’s been quite a momentous week for me as far as writing goes. Having typed 7,664 words, I’m reasonably happy with my output. But I’ve also reached a milestone. As of last week, my plan for the book consisted of 61 chapters. Yesterday, while reading through the index cards I use the keep track of the various plot developments, I realised that two planned chapters were more or less doing the same thing as two other chapters in terms of moving the story forward. They had become redundant; scenes that would have contained exposition for the sake of it, due to the way that the writing so far had developed. This happens, and I have to try to not be too rigid in my thinking about it, which can be a challenge. The upshot was that I effectively deleted two planned chapters. This brings the total planned chapters down to 59, which is significant, because it means I am now more than halfway through the first draft. In the same way that Tolkien’s Treebeard likes going south because it feels like going downhill, I find that getting past that halfway mark always feels like a hurdle cleared, and it’s downhill, in a nice way, from here.

The Aut Life

It’s funny how at a keyboard, without having to talk to someone face to face, I can be very honest to myself and others about how I’m coming to terms with my autism, and the way I am trying to deal with my mental health issues in light of the diagnosis. The recent upheavals I’ve previously mentioned that led to an autistic meltdown have had a lingering effect on me, but I’m trying to find a way back. Walks in the park help. Seeing the progress I’m making on the novel helps. And so does reading…

I’ve just finished the hardback book, The Secret History of Twin Peaks by Mark Frost, and it was a blast. Not only is it an exceptionally well-put together production, truly beautiful on the eye, but it’s a clear love letter to the TV show, from its talented co-creator. Well worth a read if you’re a fan of this classic show. I’ve now started the follow-up, Twin Peaks: The Final Dossier also by Frost. It’s not such a meaty tome as The Secret History, but still a highly enjoyable fanboy indulgence for me.

Apart from that, I’m still listening to Neurotribes on Audible, and reading What if: Serious Answers to Absurd Hypothetical Questions by Randall Munroe on Kindle, which is entertaining and informative in more or less equal measure.

Reading a good book gives me so much pleasure. I hope I give something back with my own writing.

The Aut Files

What is the spectrum?

Some time before I was diagnosed with autism, in fact before I had even seriously considered I might be autistic, I had noticed a type of phrase was doing the rounds. Particularly in workplaces, I was hearing phrases like:

“He’s definitely on the spectrum,” or “She’s got to be on the spectrum somewhere.” These words were invariably spoken in pejorative tones, usually fairly quietly in a nudge-nudge fashion, and directed at someone who had become upset in public, or who has been judged to be annoying or difficult in some way. I’ve also heard the same thing since I was diagnosed, but funnily enough, not once since I came out publicly as autistic. I wonder why.

I’m going to infer two things. Firstly, that the people who were using those terms knew they were delivering it in the form of an insult; that in their eyes, being on the spectrum was some kind of red flag that made a person eligible for scorn and derision. Secondly, I infer that these people don’t have the first clue what the spectrum means in relation to autism. They would not be alone in this.

Another turn of phrase that keeps cropping up, less pejoratively, is, we’re all on the spectrum somewhere. Although this is usually uttered with some kind of misguided sympathy, again I can infer that people offering such an observation simply don’t know what the autism spectrum actually is. So prevalent is the abuse of the term, that sometimes medical professionals will answer questions about the spectrum in a way that generously accommodates the ignorance of the person asking. I know this from personal experience:

When I received my diagnosis, the specialist working with me asked if I had any questions. I was a totally uninformed novice, so I asked her, “Can you tell me where on the spectrum I am?” I bet she gets that a lot.

She smiled, and said something along the lines of “If you’re referring to severity, we don’t really use a scale of severity as such. We wouldn’t give you a number to represent a position on the spectrum,” or words to that effect. What she didn’t say, but she, as an expert, clearly knew was, It doesn’t work like that.

I, like many, had assumed the spectrum was simply and only a measure of severity. At one end there were the mild autistics; people who might never even realise they were autistic. At the other, the severe autistics suffering profound difficulties. Like most things in life, it’s not that simple.

Enough preamble. What is it?

The spectrum refers to a wide variety of symptoms and disorders, grouped together usually (at present) under the umbrella term Autism Spectrum Disorder (ASD). So, disorders that were previously called autism or Asperger Syndrome or some other lesser-known conditions, are all generally grouped as Autism Spectrum Disorder now. To confuse matters, many people casually refer to Autism Spectrum Disorder simply as autism – including me. When you catch me saying autism, what I actually mean, under current terminology, is Autism Spectrum Disorder.

Each of the previously separate conditions that make up ASD have a number of symptoms that overlap with each other. In all cases, Autistic people do not necessarily have all the many possible symptoms – in fact I would suggest that no one has ever had all the possible symptoms together. Furthermore, not all autistic people have the same severity of symptoms. And here’s the thing; an autistic person may have several symptoms, but some of the symptoms only mildly, some symptoms more markedly, and some severely. For every autistic person the severity of symptoms may vary, symptom-by-symptom, on long or short terms that can be highly unpredictable. There are no rules.

So, if you consider that there are a multitude of possible symptoms, of which each autistic person may have an arbitrary number, with each symptom at a different level of severity, coming together in an overall level of severity in terms of the impact on that person’s life, you can see that each autistic person will have an absolutely unique autism. While similarities and trends can be identified, no two autistic people will be the same. It is as unique as a fingerprint for each autistic person.

So what are these symptoms?

The range of symptoms is so wide and bewildering, that it’s actually more user-friendly to list some of the categories of symptoms. The categories include:

Difficulties with social skills.
Communication difficulties.
Restricted or repetitive behaviours.

As I discussed in my previous blog, listing information like this doesn’t really do the disorder justice. Understanding the severity of the symptoms, and the impact on the autistic person’s life is key. Talking abstractly about someone having social and communication difficulties, with some repetitive behaviours, doesn’t sound so bad. But take a somewhat stereotypical (fictional) portrait of an autistic child:

He is non-verbal, and cannot make eye contact. He will not interact with other children at all, and often acts as though his parents don’t exist. He bangs his head repeatedly against walls, causing actual injury to himself. Or he might just sit gently rocking. He can only tolerate seeing his mother if she is wearing one particular dress; if mum wears anything else, it triggers a screaming fit from the child. The closest thing the child does to playing is picking up small objects and spinning them on the floor, for hours on end. The only thing the child will eat is dry toast or salty potato chips. His toilet training is significantly behind that of other children. (I’ve put this group of symptoms together based on cases of real autistic children I have read about.)

Or what about this different portrait:

She is highly intelligent and verbal, but hated attending school, often playing truant to get away from the noise and pressure of interacting with other children, as well escaping the regular bullying she suffered for being different. As a result, she failed to get the exam results her natural intelligence could have brought her. She has had friendships, but these always fell apart after a while, as people always went off her. She went from one dead-end job to another, and one failed relationship to another, unable to make a success of anything, and always feeling like she didn’t fit in because she liked to be on her own, and couldn’t engage in small talk or gossip. She overheard people describe her as weird and creepy. Diagnosed with depression, she developed a drug habit. She couldn’t manage money properly, racked up huge amounts of debt, and ended up homeless and alone, living on the streets. She died without ever getting the diagnosis of autism that might have brought her the correct support.

These brief portraits are stereotypical, but – understand this – not typical. There is no typical autistic person. Some autistic people may have so few symptoms at such mild severity that it never occurs to anyone they might be autistic; perhaps they’re just seen as a bit eccentric. Other autistic people may have many symptoms, most or all of which are extremely severe, such that they have immense struggles functioning in the world. Most lie somewhere between; somewhere on the spectrum. The spectrum is both scope and severity, in a mind-boggling multitude of unique variations, which is, I believe, what Dr Stephen Shore was getting at, in the above quotation.

To add further complexity, there are many medical conditions which are co-morbid; health problems that occur with or alongside autism. Again, which of these co-morbidities occur varies both in scope and severity per individual. I think of them as another spectrum surrounding the autism spectrum like a halo. These co-morbidities include, but are not limited to:

Anxiety
Depression
Bipolar Disorder
Psychosis
Schizophrenia
Attention-Deficit Hyperactivity Disorder
Epilepsy
Obsessive Compulsive Disorder
Tinnitus
Irritable Bowel Syndrome
Bowel Disease
Sleep Disorders
Immune Disorders

This is just a short list. If this information is news to you, or if you don’t believe me, I would urge you to check for yourself; ask google, read the many books available. Don’t take my word for it. But most of all, please be kind to people. You don’t necessarily know who is on the spectrum – they might not know themselves – and you don’t know the internal struggles other people face. For me, life is a daily struggle; a battle to function in a world in which I feel I don’t fit. I’ll come back to this issue in future blogs, talking about masking, and something I call self-masking.

That’s all for this time. Have a good week, take care, be safe and happy.