Do and Don’t of Interaction with an Autistic person

For the purposes of these tips, I’m going to assume that the social situation is between a neurotypical and an Autistic person. A neurotypical may meet an Autistic person in college and wish to get to know them or maybe you are friends with a recently diagnosed and want to get to know about the condition or you are a parent of a child/teenager who has just been diagnosed. These won’t necessarily work for every situation as every Autistic person is different with different needs and different skillsets. I’m largely basing these lists of Do and Don’t on personal preference and generalised commonality through researching into the Autistic Community.

DO

  • Learn their preferred terminology if you are going to refer to their Autism and the Autistic community. Most Autistic people prefer identity first language such as ‘I am an Autistic person’ as opposed to ‘I am a person with Autism’.
  • Make sure the situation is comfortable for the Autistic person as we can be overwhelmed by busy places that are crowded and noisy, so if you are going for coffee, grab a take out and go somewhere quiet.
  • Another sensory issue, although not every Autistic person will have issues with senses, but make sure you are not wearing overpowering perfume/deodorant, the area you are meeting in has a neutral smell, if outside that you are in the shade if its too bright and for inside that the space isn’t overtly bright.
  • Be prepared that the social back and forth conversation between a neurotypical and an Autistic person may not function as you’d expect as we read social cues and understand them differently. We may butt in over you or speak at length about our areas of interest. This is not us being rude but rather our area of interests makes it easier for us to communicate.
  • Allow time for answers as it may take some Autistic people time to process what we want to say. If the person you are meeting has issues with social or communication, it may be an idea to learn their special area of interest(s) in advance to find either a common ground, or for you to know what they like and to ask questions based off that. This will build a rapport while also easing the nerves of the Autistic person.
  • In the case of non-verbal Autistics, many can use ways of non-verbal communication, this may require more time for them to either write or input a response. Though some non-verbal Autistics will have a co-occurring learning disability that may not be able to write or input a response. The idea of language is a neurotypical thing, they will have their own way of communication by pointing or gestures, some may even be able to sign to a degree. Some may be able to use picture cards or possibly learn how to use them with time.

DON’T

  • Do not, for the love of *insert deity*, say things like ‘were you vaccinated?’, ‘you don’t look Autistic’ or ‘sure, everyone’s a little bit on the spectrum’. Sure buddy, but you’re on the stupidity spectrum.
  • Do not initiate touch greetings, like handshakes, hugging or kissing, these can be very uncomfortable for some people on the spectrum. Also don’t force eye contact.
  • Assume that we don’t have a love or sex life. Autistic people can be anywhere on a the sexuality spectrum, and it’s even reported that their is a significant number of Autistics on the LGBTQA+ spectrum. Whether they’ll be open about it is another thing, we are generally deeply personal and don’t often give information like this freely so do not press.
  • Assume that we are ‘dumb’ or don’t understand stuff or have a learning disability. We do understand, we just respond differently. Around 40% of people on the Autistic spectrum of an IQ that is Average or Above. Learning disabilities only occur in Autistic people if it is co-occurring with something else.
  • We are not all good at maths, or science. We are not savants or like Ray Man or that kid in the newest Predator. And most importantly, do not mention Sheldon Cooper.
  • Do not use functioning labels, high, mild and low functioning labels are generally perceived by Autistic people as harmful and misleading and are mainly used by Diagnosticians as determining the levels of support one may need. For example I am diagnosed with high functioning classic autism. It’s high functioning because I am smart, can read and write, can communicate, I got a degree but on the other side, I am extremely social anxious, avoidant and indifferent to human and social interaction. It takes me about 15 minutes to tie my shoelaces, I can barely cut my nails and despite my communication skills, I may only utter a few words or sentences per day.

What is Autism Spectrum Disorder?

This is a topic I probably should have started off with before I went through my little auto-bio of my journey towards my diagnosis of ASD [Autism Spectrum Disorder]. Here I am going to share the standardised medical description of what the diagnosis is from the DSM-5, but more importantly I am going to explain in my own words what it actually means to be an individual with Autism.

So from https://www.autism-society.org/what-is/diagnosis/diagnostic-classifications/

“The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, most recently released as the DSM-5 in 2013, is used by many organizations, individuals and government to diagnosis psychiatric disorders such as autism.

The DSM-5 redefined autism. Its predecessor, the DSM-IV-TR, included five Pervasive Developmental Disorders (PDDs): Autistic Disorder, Asperger’s Disorder, Rett’s Disorder, Childhood Disintegrative Disorder and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS).

In the DSM-5, Autistic Disorder, Asperger’s Disorder and PDD-NOS are replaced by the diagnosis of Autism Spectrum Disorder. Additionally, the DSM-5 also reduces social-related elements of autism into social communication impairment and repetitive/restricted behaviors, though the labels of Asperger’s and PDD-NOS are still in common use.”

First of all, don’t worry if you were diagnosed with Asperger’s or PDD-NOS, they are still considered valid and you are still within the spectrum. One of the key things I’ve said since my diagnosis, is that this is not a linear thing, it ebbs and flows through the triad of Autistic traits. This just puts all the other diagnosis under the umbrella of ASD, a step in the right direction for me, but more needs to be done. For one, replacing Disorder with Disability or something to that effect.

So what is Autism? Autism is a lifelong neuro-developmental disability that is present from childhood that can impact the person’s social skills, communication, relationships, and self-regulation. Autism is defined by certain behaviours but every individual presents with these behaviours in differing ways as Autism is a spectrum.

In the DSM-5, Autism is characterised as:

“Persistent differences in communication, interpersonal relationships, and social interaction across different environments.”

What this presents as is; being nonverbal or having atypical speech patterns, having trouble understanding nonverbal communication, difficulty making and keeping friends, difficulty maintaining typical back-and-forth conversational style.

This can also make things like learning in school difficult or retaining information that is given to you verbally like in a work place.

“Restricted and repetitive behavior, patterns, activities and interests.”

What this presents as is; repeating sounds or phrases (echolalia), repetitive movements, preference for sameness and difficulty with transition or routine, rigid or highly restricted and intense interests, extreme sensitivity to or significantly lower sensitivity to various sensory stimuli.

I for one are very engaged with a number of things, most intensely would be Japanese wrestling and music. I am very routine, my days are planned out well in advance. I suffer extremely bad from sensory issues like touch and light.

This is not an epidemic.

We don’t need to be cured.

We just want understanding, space and compassion to allow us to full be our Autistic self.

My Diagnosis Journey

As I wrote in the About section, I was diagnosed at the age of 31 in the awful, awful year that is 2020. My diagnosis of ‘high functioning’ Autism has been a wholly positive experience for me though, which I will cover in another blog post down the line. I also only refer to myself as Autistic and don’t personally use the functioning labels, which is another blog topic in itself and am only using it here to talk about my diagnosis.

I’m going to talk through my struggles and issues throughout my life until the point before I started considering whether or not I was on the Autistic Spectrum. Some of my tale may ring true to you, others maybe not so much as Autism is not a linear thing and we are all uniquely individual.

I’m lucky to be blessed with a somewhat photographic memory, not Eidetic by any means but I remember a significant amount of what I was like as a child. Quiet, shy, but slightly hyper and distracted at times and easily fatigued, the beginning of rigid and fixed interests were forming, football, Pokémon, wrestling, video games and books. I was always trying to be like the rest even this young but I found the social life of primary school child easier to manage than what was to come.

Teenage years was when it began to really start to unravel, the social facade that I managed to maintain was broken, football and video games were acceptable but enjoying Pokémon was taboo and books were nerdy. Nu-Metal was big at the time of secondary school so I found a tribe there, but it was Othered by the ‘cool’ kids, grunger, goth, freak. But I survived, kinda. Also, why was every guy after girls now? I didn’t understand it. I was struggling to maintain my friendships as well as my interests grew from Nu-Metal to obscure Black/Death Metal, which no one wanted to talk about but I incessantly rattled on about Black Metal [eventually doing part of my thesis on it].

Around 15/16, I was very depressed, unaware of my heavy ‘masking’ trying to fit in still to the alternative tribe, loneliness creeping in and the increasing pressure from social circles of ‘why aren’t you interested in pursuing romantic relationships?’, which of course at the time to male teenagers meant you were gay, in actuality now I’d consider myself a hetero Asexual. I was also drinking heavily to loosen up, be more social, be more like the other people, you know, be ‘normal’. I was diagnosed with Major Depressive Disorder around this time, which I am very open about now, but at the time I treated it like a Death Sentence. Something like ‘Oh no, I’m already ostracised enough!’. I was also terribly uninterested in all of the curriculum so I spent most of my time in secondary school daydreaming, listening to my walkman or reading books that were more interesting to me. The rest of the time I was pulling sick days to recharge.

Now late teens into my 20s here. Didn’t go to my Debs [you might call it a ‘prom’] cause of the formality of it, the social implications and pressures so I went to go see the Ian Curtis movie. Started working for my father on building sites after dropping out of College of Commerce Cork. I didn’t mind some of my work, I enjoyed the work with the Bricklayer’s, getting to stack blocks was soothing [this was when I started developing notions of Autism], attention to details of finish but I was terribly slow and I couldn’t take orders from Foremen that a) I didn’t like or b) thought were stupid. The heavy drinking continued but the relationship issues remained but the drinking and now the newfound appetite for drugs masked it so I managed to superficially fit in but the cracks of masking for so long and not understanding it were beginning. I was angry, depressed, frustrated, feeling misunderstood and at the end of my rope.

A near death experience from an accidental overdose was the first physical health wake up call and then a stomach ulcer soon after made me re-assess completely. It was a terrible time of my life, but now I look back and consider it necessary for where I am today. I stopped drinking and doing drugs, still to this day I remain clean. I also started taking my mental health seriously and keeping up with my medication. In general I was happier but still frustrated and without my social lubricants, I began to withdraw but my old interests of Pokémon, wrestling and books came back and was very, very soothing. I was enjoying my time alone for the first time really and I was okay with it.

I quit my job with my dad, I was struggling so much with it. I went back to education to do Art. But for the first year in CSN, Cork, I mainly kept to myself, did my work, went out to my car at breaks to read or just chill by myself. Process based artmaking like etching a drypoint or making a piece from clay that had a defined order was a slice of heaven to me. Unfortunately, small clashes with painting as my order of doing a painting was my own defined way and not the general consensus to making a painting, which I rigidly stuck too until I graduated from Crawford and still do to this day.

It was around this point that I began to wonder, social issues and lack of interest in social engagement, I would speak as little as possible [unless comfortable with the person] I would be non-verbal if possible, issues making and maintaining relationships, romantic relationships, sensory issues with lights, smells, noise and being touched, rigid approach to work and attention to detail, fixed interests [same as before football, Poké, wrestling, games, books but now with art and tattoos!], posture issues, tics & stims [unknown at the time] and very routine driven.

Unfortunately, it took another 5 years for me to seek a diagnosis but I got there in the end and I couldn’t be happier with it. I finally now I understand myself. I went privately so it was relatively quick but costly process for me, but I got my diagnosis within months instead of the years it would take on the public system.