In this blog I will be breaking down the diagnostic criteria for Autism Spectrum Disorder and deciphering the jargon. I hope in doing so, you will gain a truer understanding of what ASD is, how it effects people and how they may present to the world. Please note the points I have made below are from my own understanding and knowledge and are not exhaustive. Autism is a Neurotype Characterised by a set of traits that each have a number of traits within themselves, and therefore presents itself differently in every individual.
To define the diagnostic criteria, I will be referring to the DSM V (Diagnostic statistical manual of mental disorders edition five). This is the handbook used by professional practitioners to define and diagnose mental disorders and conditions. The DSM was first published in 1952 and has undergone periodical review and revision (American Psychiatric Association, 2020).
In the first edition published in 1952, the word Autism was only associated with schizophrenia in young children. It wasn’t until 1980 that Infantile Autism was marked as separate from schizophrenia and included in the DSM III. By 1994 with the publication of the fifth edition, “Autistic Disorder” had increased to include four subcategories: Asperger’s Disorder, Pervasive Developmental Disorder, NOS (not otherwise specified), Rett’s Disorder, and Childhood Disintegrative Disorder (E. Herman, 2019).
In 2013 with the new revised edition V, all four subcategories were put under one umbrella term of Autism Spectrum Disorder and that’s how it is referred to today. The only differences are the support level which are: level 1 (low support needs), level 2 (moderate support needs) and level 3 (high support needs).
The diagnosis must refer to two main areas, the first being deficits in social communication and interaction, the second being restricted, repetitive patterns or behaviour, interests or activities. I will try my best in my own words and experience to define each point below. Please take note that I am somewhat generalising, and I can’t know exactly what it’s like for every person.
If you find yourself thinking “I do that, doesn’t everyone?”, that is because Autistic behaviour is human behaviour, only more so. Meaning these traits are things everyone can relate to, but in Autistic people they are amplified to a degree that they cause ongoing difficulty for the entirety of ones life and are present from birth. Or… you may just be Autistic, yourself.
1A- This may look like someone just being a little bit socially awkward, quirky, very shy, or very talkative. Maybe something just seems different about them. Maybe the conversation doesn’t flow easily with them and small talk seems particularly difficult. Maybe they are only able to engage in a conversation when it involves the narrow and specific topics that interest them, and maybe they won’t be able to tell if you’re interested in what they’re saying or not. May forget to say things like “Hello” or “Goodbye” or other socially expected pleasantries.
Tend to have delayed or subdued emotions, looking calm and collected on the outside at the time but much later in private the emotions can come out. (This can be part of the myth that Autistic people lack empathy because they take longer to process things or just don’t show how they really feel/show it in a different way).
They may find it difficult or even impossible to initiate conversation and might speak only if spoken to. Maybe they will respond in a blunt manner to your question or fail to expand on it or carry the conversation on. Some Autistic people are selectively mute, particularly in situations where they are uncomfortable or don’t know you they won’t be able to verbalize anything.
May be out of sync with a group of people, say the wrong thing at the wrong time, laugh at the wrong moment or fail to notice when the conversation suddenly turns serious. They might say things that are very blunt, to the point or can come off as abrasive as tact is not a strong point.
They may find it very difficult to comfort someone emotionally, which does not mean they don’t empathise, in fact they probably empathise a great deal more than Non-Autistic people but have difficulty expressing it.
They can over share and not know how much they should include or what to leave out, or not share at all or both at different times. They are very honest people and don’t often mince their words.
A2- This may come across as having a strange way of interacting, but you can’t put your finger on it. Maybe they don’t make eye contact or not much eye contact or overcompensate and make too much eye contact. This is because eye contact can distract them from what is being said as they are paying too much attention to “what the appropriate amount of eye contact is”. Or maybe they feel too exposed to have someone look into their eyes, or self-conscious. May have an odd way of speaking or their voice can be monotone, unusual, or even high pitched and child-like. Maybe you can’t tell if they’re being sarcastic due to their blunt responses. They may be hard to read because of a possible “flat affect” where their facial expressions don’t match how they feel or maybe completely lack facial expressions and might look upset, scared, angry or bored even though they’re happy or neutral.
It might feel like you need to do a lot of work to figure out what they’re trying to say or decipher how they really feel. Ironically, the Autistic person probably feels the same way about you if you’re non-Autistic as they have difficulty deciphering body language of “Neurotypical” conversation. They may often miss the subtle cues or get confused by what you “meant” but did not say verbally.
Sometimes they can have difficulty using their initiative or having to gauge what it is you want or need from them. Often people will expect other people to “get the hint”, which Autistic people often don’t do. For example, they might not pick up on your expectation or body language that they are to help you with something, because they just didn’t know that they were supposed to because you never said it. Or maybe they did pick up on an expectation but just aren’t sure of how they should go about helping.
A3- This is probably the most detrimental point which can lead to severe isolation and loneliness in Autistic people’s lives.
This may look like an overly logical person who just doesn’t ‘get’ people. Social phaux pas are extremely common, they tend to take things literally or respond to rhetorical questions. They tend to miss the subtle complexity of social communication. You might feel like you just can’t get to know them, this might be due to social “masking”, where a person tries to hide their true self in order to fit in and not be ridiculed.
They often object to social conventions thinking things like “do I have to do that? Isn’t that just a stupid social rule?” which can leave them left out of things or they may come across as rude (for example not liking to say Happy Birthday, or not buying a present because they don’t understand the logic of the convention). May be social or hyper-social when out with people but then crash when they get home and need a lot of time to recover. This comes off as being “all or nothing” in relationships going from periods of intense connection followed by sudden withdrawal that’s seemingly out of nowhere. They can shut down and go silent, cease contact and isolate themselves due to the social confusion or exhaustion, without the skills to reconnect later. If they are tired or run down the cracks in their performance to seem “normal” may start to show as the performance is draining.
All of this makes it incredibly hard to maintain friendships or relationships. Often the continued social mistakes that they can make causes them to stop trying.
B1- This generally looks like a person stimming (self-stimulatory behaviour). This gives the body sensory input for emotional regulation, basically it feels good and they often need to do it. This can be via “unusual” repetitive body movements (bouncing, moving, playing with hair, clicking fingers, flapping hands, bobbing legs, feeling surfaces or clothing, biting their lip, touching their face, adjusting themselves, smelling objects, looking at shiny objects… The list is endless), unusual patterns of speech, humming, vocal sounds, fiddling with objects, echolalia (repetition of another person’s spoken words or a movie quote etc..) Stimming can be healthy or dangerous depending on the situation. A person will stim to display happiness, contentedness, stress, confusion, anger etc. Healthy stimming should be encouraged as it really does benefit the individual with emotional regulation, but dangerous stims should try to be replaced with safe ones.
B2- This looks like someone who loves routine to the extreme. Maybe they get very distressed if they have to take a different route somewhere or a plan suddenly changes. They may like to eat the same meals every day or wear the same type of clothing. (Does Sheldon Cooper’s “You’re in my spot” ring a bell?) They may place an emphasis on rules and routine as this makes the world more predictable and easier to understand, unlike the unpredictable social world that they find so confusing. This is highly correlated to anxiety, with the desire to live in a safe and predictable world. They just want to know what to expect and what’s going to happen so they can mentally prepare for it or avoid uncomfortable things. If they have learnt a positive routine or way of doing a task that works well for them, they think “why would I want to do it another way if this way works so well? I don’t know what will happen if I do it that other way.” They are often encouraged to attend social events if they know exactly what is expected of them, the purpose of the event (a function is very important otherwise can just seem pointless). They need to know if there is an easy way to leave if needed, food they are comfortable eating or if the sensory environment will send them into over-drive. It is especially hard to go somewhere they’ve never been and have no idea what to expect.
B3- They tend to absolutely fall in love with certain topics (special interests) and take a lot of pleasure in focusing on those. They can hyper-fixate on a topic to the detriment at all other chores or sometimes even personal care. On the other hand focusing on such a passion can lead to a successful and fulfilling career in their chosen field. They tend to have an “uneven skill set” or a jagged profile (excelling at a number of very specific interests at the expense of others). They can put all their time and effort into their special interests and avoid doing the things they aren’t good at or don’t like, things that “most people” seem able to just do like socialising. This can mean their social skills get poorer because they aren’t practised as much.
B4- This means they have an atypical sensory profile, that can look like only eating plain food or having an aversion to particular texture of food only sticking to the narrow amount of food they enjoy, a dislike to fluorescent lights, flashing lights, high pitched or repetitive sounds, loud noises, texture of clothing- tending to cut tags from clothes, an aversion to touch or strong smells. On the other hand, someone with Autism can be hyposensitive to sensory input- having a higher pain threshold for example.
All Autistic people have very different profiles and nuances, and yet this diagnostic list is what ties them together. Each point can look very different in different people.
I think something important to note is that although they love solitary activities and often opt to be alone, it doesn’t mean they don’t have the desire or need to be with others. As you can imagine, having all of these differences in the way they perceive the social realm (and having the minority neurotype) can make things very difficult. Sometimes they have been ridiculed for social mistakes or confusion, and when this happens many times it causes anxiety, and can cause them to give up or not feel mentally prepared.
If you know someone who is on the spectrum and have noticed they are withdrawing, please don’t think they don’t want to see you ever again! Maybe they just need extra understanding, and only feel comfortable in very controlled environments that they are familiar with, where they know what to expect. Maybe try doing activities that involve their special interests and in a low stimulus environment.
Another thing to remember is if you are feeling confused about them, they probably feel the same way about you. Sometimes It feels like you’re both speaking a different language or from different cultural backgrounds, but it’s important to have patience and for everyone involved to be easy on one another. The worst thing you can do is make someone feel silly for being their true selves. If an Autistic person is their true unfiltered self with you, then think yourself honoured because they only do so with their closest people.
The reason I am trying to explain all of this, is that I think it’s important to break the stigma around Autism and to show people what it’s actually like. Instead of making snap judgements because of representation on TV shows, or because you’ve met one Autistic person and thinking you know the rest. I want to take the shame out of it and want to stop people assuming someone who is different is just weird and not to bother with them.
I know many of the points above sound like bad things, after all, people only get diagnosed with things because they hinder their functioning. But with every negative point there are 20 more positive flip sides and in the future I want to highlight this more. But I also think it’s important not to sugar coat Autism, because for many it is extremely debilitating, and it is a life-long thing. I myself have good and bad days, some days I am proud and glad to be Autistic and other days I wish it didn’t apply to me. But I think what would help is having compassion and understanding from others in society, this would free us all to take off the mask and be authentic to ourselves without the fear of bullying or rejection.
I hope this information has made sense. I know Autism is very elusive and hard to comprehend. But please feel free to ask me any questions and I’ll try my best to answer or point you in the direction of one. Thanks for reading.
Amber.
References:
1. DSM-5: Frequently Asked Questions. American Psychiatric Association, 2020. Retrieved from: https://www.psychiatry.org/psychiatrists/practice/dsm/feedback-and-questions/frequently-asked-questions
2. The Autism History Project. Ellen Herman, 2019. Retrieved from: https://blogs.uoregon.edu/autismhistoryproject/topics/autism-in-the-dsm/
Other sources of information:
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