As I said in my first post in this series, there are three fundamental areas that need to be understood to provide effective support.
Of the three, I believe that it is communication and social interaction that are most misunderstood. Autistics are portrayed as having a lack of empathy, poor Theory of Mind and generally rude and abrasive. These are not true, these are interpretations made by NT observers who had little to no understanding of what is happening form the autistic perspective. Much like the duck and the rabbit can both be true, autistic communication and NT communication are both equally valid, just different takes from different experiences.
When you ask people about communication, the assumption tends to be that we are talking about speech. Speech is often seen as the gold standard. Parents worry if their non-speaking child will ever speak, seeing non-speaking as a major barrier to connection and understanding. We even have the word ‘dumb’ in the English language. It means non-speaking but has also come to mean stupid or unintelligent, because people often confuse non-speaking with the lack of ability to think. Non-speaking people are often referred to as non-verbal, assuming that being unable to speak means you have no access to words. And it’s not true.
Speech is often affected by motor skills challenges. All the words are there, all the understanding is there, only the physical connection to the mouth is missing. And when we focus on speech as a key developmental goal we deprive non-speaking autistics of their voices.
And non-speaking autistics have powerful voices.
Humans can communicate in numerous ways that do not involve speech – body language, facial expressions, gesture, sign language, texting. All of which are equally valid.
For non-speaking autistics there are a wide variety of systems that support communication and should be used as early as possible as an alternative to speech. There is a myth that providing access to these systems delays speech development. This isn’t true. In fact, research into Makaton – a simplified sign language – showed that children taught Makaton from three months up showed stronger language development than children exposed to speech only. Not only that, frustration and ‘temper-tantrums’ were significantly less as the children were able to effectively communicate their needs.
The key systems for non-speakers to begin to develop communication are Picture Exchange – not PECS which is ABA based; Sign Language; AAC (Alternative Augmented Communication). Different systems suit different children and a good Speech Therapist can provide support in identifying the best communication system.
For those who want to learn more about non-speaking communication, there is an excellent Facebook group – Ask Me, I’m an AAC user! (24 Hour Rule!) .
And for those of us who do learn to speak, communication is still often problematic.
Some of us, like myself, are partial speakers experiencing situational episodes of non-speaking when our stress levels or processing demands get too high or energy levels get too low to manage processing properly. When speech disappears for me, it is like the power steering has been switched off on a car. I can still access speech but it is massively hard and slow work and is almost guaranteed to trigger a meltdown if I try too hard. I have now learnt to switch to texting at that point. It places almost zero processing demand motor skills wise. If my brain becomes too overwhelmed, approaching meltdown, I can also lose my words becoming non-verbal. At that point, not even texting is going to help, I have reverted to my native language and all access to my scripts and phrase books are lost.
My experience of verbal language isn’t true for all autistics. Some autistics think and process naturally using words as part of their cognitive structure. For me, using words is a two-step process.
The closest match to what I experience is that I think in patterns, shapes and feelings (not feelings as emotions, but feelings of fit, security, connection). This means that when I want to communicate my ideas to someone else I need to translate them into a shared language – words. I was a late speaker, but I avidly collected words from a very young age, listening to those around me, reading books (including dictionaries) – I was reading by two, picking up phrases and catchphrases. I then pattern matched them to what I was trying to express. Picking up ‘live’ words that matched the energy of my thoughts and discarding dead words that sat there like black cow pats. Once I had developed enough scripts to speak in full sentences and gained full access to the motor skills around speech, I started to speak. I spoke like an adult because those were the scripts I had to learn from. Which was a little disconcerting to those around me and caused major problems when trying to talk to peers. Turns out most four year olds are not interested in politics and are unfamiliar with great words like discombobulate and soporific. Who knew?
I also found, and still find on occasion, that while my scripts match the patterns in my head, what I understand by those words and what others understand by those words can be two very different things. I think I am being clear. They think I am being clear. However, what they reflect back is very much NOT what I tried to communicate. This is enormously frustrating for everyone involved.
Having to translate also causes problems in processing when I am trying to convey new ideas or learn new ideas with new vocabulary. At that point I am trying to pattern match in real time, while trying to keep up with the conversation around me. It can overwhelm my processing completely.
At my age, this is now much less of a problem. I have developed analogies that help create mutual understanding. It doesn’t always work, sometimes the person I am talking to does not share the same frame of reference as me and so the analogy fails. I also have an enormous database of well-worn scripts and phrases for most situations and occasions. When I am in a familiar situation, I just flick through the rolodex and pick out the matching scripts and they then flow easily.
In addition, I have learnt to pre-script for difficult conversations. I develop the script several days in advance and run through the alternatives of the conversation prepping a variety of responses based on anticipated interactions. It means that I am caught by surprise significantly less than I used to be. I also run and re-run old conversations that did not go well, fixing and polishing the scripts that I should have used, ready to use if that situation crops up again.
This creation of scripts and collecting phrases can often be seen in echolalia, where someone repeats a word or phrase over and over. Often people assume these phrases are meaningless because they do not share the same frame of reference as the speaker. However, often these phrases fit an idea in our head and we use them to convey that thought. A little detective work and it is often possible to find the connection and develop a mutual understanding. One word I used to use as a child was ‘Potatoes’. People thought I was hungry or was expressing a preference for potatoes. I wasn’t. I hated potatoes, they were bland and boring. In fact, potato meant bland and boring to me, it was the ultimate expression of bland and boring. Potato meant I was really bored or the food had no flavour – something that was horrible to my little food stimmy self. And I couldn’t understand that the word did not have the exact same meaning for everyone else. Four year olds are not known for strong Theory of Mind.
This ability to pre-script is another reason that talking about things we love or are passionate about can become a monologue. We have so much knowledge we want to share, knowledge we have learnt in enormous book sized scripts. And we deliver in the large scripts we learnt it in, recreating the happy hours that we spent collecting this knowledge. And for us, sharing something that brings us joy is a gift of love. We are sharing something that is very precious to us, in all its glorious technicolour detail.
Then that gift is smashed to the ground and trampled on when we are stopped mid-flow and told we are boring or ‘No one is interested’ or ‘Talk about something else for once’ or ‘No none wants to hear you go on and on’. And we learn that no one is interested in us and what brings us joy. Not even the people we care about the most. And we die a little.
This misunderstanding of info-dumping is just one example of the Damien Milton’s Double Empathy theory between autistics and NTs. It is a natural situation for most people of all neurologies to have poor Theory of Mind. There is an entire body of literature on Communities of Practice that demonstrate this. We are pretty good at understanding or anticipating what people like us are thinking – because they think like us. So, as long as we stay within groups that share our way of thinking, we do pretty well at understanding others. The problem comes when we come across someone who doesn’t share our thought-world. Who has a different way of seeing and understanding the world. Both sides naturally assume that the failure to understand comes from the other side, that their way of thinking is the right one. This becomes extremely problematic in a majority vs. minority situation where the majority leans back on numbers to reinforce their position that their way of thinking is correct and it is the minority that needs fixing. This is true not just for autistics, but for ANY minority group. This misconception is being challenged but there is still a lot of push back from the majority and this needs to STOP. Our voices and our way of being is as equally valid and deserving of respect as the majority.
Here are some of the most common ways that different ways of processing and experiencing the world cause misunderstandings between autistics and NTs.
What hasn’t been included in these tables is honesty and lying. It is something that has confused me all my life that NTs say they value honesty and yet they lie all the time. Lying is a social expectation. You are considered rude if you don’t lie. It makes no sense to me which is why I cannot give a perspective on why lying is so valued within the NT community when they say it is important to be honest.
Over time I have learnt weasel or loophole phrases that mean I do not have to lie but I know that the listener will misinterpret. ‘There are no words to say how brilliant that was’ ‘How do you feel in that dress?’ ‘No words…just no words.’ I still dislike doing it but it is the only compromise my brain can work with.
For me, I struggle with lying because it breaks the shape of the world – it distorts reality. It doesn’t fit and it is really uncomfortable, like wire wool on my brain. I have tried it on occasion as a protective mechanism, but my discomfort with doing it flashes like a beacon above my head. In addition, I have enough trouble keeping track of a busy and confusing world just dealing with reality – keeping track of lies is WAY too much work.
However, I am often accused of lying or exaggerating because my experience does not match their experience and they take their experience as true. Plus – lack of eye contact, performed facial expressions and body language, time agnosia so I cannot accurately time stamp events, processing pauses. All of these can be misinterpreted through an NT lens as dishonesty.
This misinterpretation makes me very vulnerable to gaslighting, where I am being bullied. Should I report the bullying, the bully acts the victim and uses my autistic presentation to reinforce that I am the liar and they are the victim. Often they will lean in to push triggers that cause overwhelm to further reinforce the narrative that I am unstable. I would like to say this is just me and it was a once off. No on both counts. This happens repeatedly to autistics everywhere, both in the classroom and the workforce. And there is no defence or protection except to leave.
This is not to say autistics can’t or don’t lie. Just that it isn’t our natural tendency.
Three key things can cause us to lie.
- Masking. We lie in order to try and follow social convention or to fit in with the group. We want to belong and so we mirror opinions and preferences that the group shares, even if they aren’t our own. The extreme is when we make up stories about ourselves to appear more interesting to the group, knowing that if we don’t we will get ignored and shut out.
- Protection. Like everyone else in the world, if we are heading for a world of pain and retribution if we are honest, we are going to lie to save ourselves. One of the reasons that punishments and rewards are a bad idea for children. It encourages dishonesty – who isn’t going to lie to protect the reward or avoid the punishment? Unless you are like me, who learnt early on that I couldn’t lie effectively, doubling the negative consequences. Most children learn though that the crime isn’t the banned activity, it is getting caught. Whereas, if you instead focus on helping support children in how to make better choices and giving them more effective options, without judgement or shame, they are much more likely to be open and honest when they mess up.
- Communication – I tell you about an event that totally terrified me. You do not see it as a big deal and do not recognise the terror I experienced. In order for the other person to fully understand and appreciate the intensity of the experience, autistics may exaggerate the event. It is not lying per se, but scaling to match experience to experience.
For instance, I am about to step into the road and a car comes racing by. Physically it may have been a couple of metres away. To my Dino brain, it was millimetres and it registers a near-death experience. If I want someone to understand I may say it was millimetres – because that is exactly what it felt like. To an observer this looks like lying. To the autistic it was an accurate representation of lived experience.
Communication is complicated. Communication is more complicated when two different cultures and thought-worlds collide. Communication can be downright challenging if you are the minority group and no allowance, understanding or acceptance is made for your different style.
The difficulties that autistics experience in social situations are NOT a social deficit, they are a social difference. If there is a deficit, it is in the majority mindset assuming that the only valid and correct way of communicating is theirs. Mislabelling us because the majority do not understand our style of communication or why we NEED to communicate our way.
Not every person out there is going to have the Theory of Mind to change their perceptions, but as autistics we can advocate for our right to at least be met halfway. We can advocate for understanding where we cannot or struggle to meet NT expectations – manners, tone, volume or info-dumping for instance.
Teachers and employers can educate themselves about the differences in styles and pass on that education to others so understanding and acceptance is nurtured in the classroom and the workplace. Unnecessary conflict and hurt feelings can be avoided, and maybe, just maybe the gaslighting and bullying that autistics experience in the classroom and the workplace might become a thing of the past.
And parents of autistics can create a safe space at home where we can communicate naturally and have our style fully accepted. They can teach their children that, while there are other ways of communication and interaction, theirs is equally valid and deserves equal respect and acceptance. They can teach about NT communication and why there may be misunderstandings and how to address that through advocacy. They can give us an informed choice to decide whether it is safer to mask outside or whether it is ok to be ourselves. We cannot forget that not masking can be dangerous – it can and has cost autistics their lives.
Give us the choice and the skills to choose. Do not force us into a culture and a communication that isn’t our own, because it is that of the majority. That way lies masking 24/7 in all situations day in and day out until we burnout. And no one knowingly wants to cause that level of distress and trauma to another person, let alone their child.