The diagnostic criteria for autism cover a broad and diverse umbrella of people, and they obscure the Autistic lived experience of toxic cultural norms that are ultimately detrimental for all people. The inappropriate pathologisation that results from the hypernormative medical lens gets in the way of providing Autistic people with optimal support throughout the lifespan.
In my experience Autistic people of all stripes seem to share two broad characteristics:
- Divergent sensory profiles – unique profiles of hyper- and hypo-sensitivity across various senses, and corresponding differences in cognitive processing.
- A reduced capacity for cognitive dissonance, resulting in an inability to successfully maintain hidden agendas in the social domain over any significant periods. In a competitive environment some may try, but this is not an Autistic strength. When an Autistic person disagrees with you or is angry with you, you will either be told so immediately or soon find out one way or another.
These neurological characteristics describe the set of Autistic people, many of whom identify with the communal definition of Autistic ways of being and with being socially disabled by our hypernormative society. It does not make any sense to pathologise or medicalise these highly variable characteristics. Attempting to trace these characteristics to specific genes is also futile.
There are dedicated medical labels for speech and language disabilities that make speech difficult and unreliable (apraxia), which are studied by neurologists who specialise such disabilities, and these can be used independently or alongside the label Autistic. This leads to the set of people with speech and language disabilities.
Non-speaking Autistic people are a subset within the set of people with speech and language disabilities. Non-speakers can be understood as having further difficulties with motor control, to the extent that speech becomes impossible – attempting to teach non-speakers to speak is at best a waste of time, and experienced as highly frustrating and nonsensical by non-speakers.
Autistic communities include speaking and non-speaking Autists with varying communication preferences. For some the ability to speak varies from day to day. Mutual aid and respect for individual communication preferences are essential aspects of Autistic culture and multi-generational Autistic whānau.
Finally there are Autistic people who are considered intellectually disabled, based on W.E.I.R.D. definitions of intelligence and bizarre expectations of independence. This set of people is simply the intersection of Autistic people and intellectually disabled people.
We do not deal properly with the issue of climate change. We do not deal properly with the issues of peace, war, immigration, food resources, water resources, public health, and all these important issues. We became incompetent because society as a whole began to focus on how to deceive and trick people. – Jaron Lanier, VR technology pioneer, 2019
The notion of life as a competitive game found its way into the science of biology by interpreting Darwin’s theory of evolution through the cultural lens of capitalism. The complementary perspective of life and evolution as a cooperative game as described by Pyotr Alexeyevich Kropotkin in Mutual Aid: A Factor of Evolution (1902) was largely ignored in so-called “developed” capitalist societies throughout most of the 20th century.
The diagnostic process often assumes that speech disabled and non-speaking Autistic people are also intellectually disabled, and in many cases this assumption is invalid, in exactly the same way that Deaf people are not necessarily intellectually disabled, resulting in a failure to provide appropriate communication support.
In summary, the majority of Autistic people identify as disabled, and all Autistic people have divergent sensory profiles and a reduced capacity for cognitive dissonance. For the most part, the social model of disability offers an appropriate frame for understanding the way in which Autistic people are disabled by society. Like wheelchair users need access to ramps, Autistic people need access to means of communication and non-discriminatory social environments.
Since the vast majority of Autistic people experience their neurological characteristics as part of their core identity, and would never wish to be cured of their Autistic way of being, the pathologisation of Autistic people is entirely inappropriate. Instead, the social model of disability and the strong sense of solidarity, shared lived experiences, and shared cultural practices in terms of appreciation of individually unique sensory profiles and diversity of communication preferences, point to human rights based and design justice based approaches as the most promising avenues for improving the lives of all Autistic people.
Depathologisation of Autistic people as demanded by Autistic rights activists does not negate being socially disabled, and need not prevent anyone from gaining access to appropriate means of communication and other forms of social support. On the contrary, such support would be much more straightforward to provide via established disability and need specific diagnostic labels that exist independently of Autistic ways of being.
Finally, given the extent to which most Autistic people are systematically disabled by social norms and expectations, as well as by the sensory overload in contemporary social environments, Autistic people have an elevated risk of being traumatised, often from a very young age, within their families, within educational settings, within healthcare settings, and later within workplace settings.
The extent to which most Autistic people are traumatised is reflected in the overlap in the diagnostic criteria for autism, ADHD, BPD, and autism, PTSD, and trauma related mental illnesses within the Diagnostic and Statistical Manual for Mental Disorders (DSM).
Untold harm is being caused by not identifying sensitive Autistic children before they are heavily traumatised by their social environments, and later, by not identifying trauma as the root cause of mental distress and mental illness that requires therapy and appropriate treatment. The most alarming aspect in the way our society mistreats Autistic people is the Autism Industrial Complex, which actively traumatises Autistic children by subjecting them to conversion / normalisation “therapies”.
Because in our society it is so difficult to find non-traumatised Autistic people, it is difficult to gain a deeper understanding and appreciation of the role that Autistic people have always and will always play in human societies, which can only be properly understood by applying an evolutionary lens to the development of human societies and human cultures over the last 300,000 years.
The current human predicament is a result of the cultural disease of super-human scale powered-up civilisation building endeavours, the origins of which can be traced back to the beginnings of “modern” human history and the social power dynamics resulting from the invention of interest bearing debt around 5,000 years ago.
Becoming conscious of human cognitive limits, and recognising that these limits are just as real, immutable, and relevant for our survival as the laws of physics, is essential for neurodivergent people to navigate sensory and emotional overload, and for (re)creating safe environments for ourselves and our human and non-human contemporaries.
The biosphere of this planet is our only home. A shift from a brittle W.E.I.R.D. monoculture to ecosystems of resilient human scale ecologies of care eliminates the spurious technological complexity needed to support a monoculture, and it retains and even grows adaptive cultural complexity, i.e. the diversity and the mutual aid that emerges when we reduce cognitive dissonance by (re)aligning the human ecological footprint with bioregional ecosystem functions.
We know from indigenous cultures that humans have the capacity to think up seven generations ahead when making decisions. Alarmingly, in the cult of busyness of industrialised societies, we have lost this collective capacity.
Spurious technological complexity wastes energy – it is the result of humans working against biological evolution, whereas adaptive cultural complexity saves energy – it is the result of humans engaging in collaborative niche construction as a part of biological ecosystems.
The embedded links and videos in this article provide more in-depth explanations and refer to relevant transdisciplinary research.
- The relational nervous system of open knowledge flows between human societies - June 2, 2023
- Autistic mutual aid – a factor of cultural evolution - May 7, 2023
- The possibilities and limitations of human agency - May 4, 2023
This is brilliant. Thank you, from one neurodivergent anthropologist to another! Thanks for the part about cognitive dissonance, too.
Ok I have some problems with this…. “attempting to teach non-speakers to speak is at best a waste of time, and experienced as highly frustrating and nonsensical by non-speakers.” This needs more definition. What do you mean to attempting to teach non speakers to speak? I think my son is really pleased to have learned to speak!! And I think we helped him. So yes, we have tried to teach him. By the clarity of your writing, I would guess you are a clear communicator, are you non-speaking? What is often the case for non speaking autistic people, is that they also can’t communicate well about anything. Not being able to communicate was highly frustrating for my son, it was obvious I had a deeply unhappy boy, and it’s obvious it would be very frustrating for most individuals, to not be abke to get your ideas across, as expressing yourself is so core to an individual’s being. Now ‘teaching’ someone to speak, is difficult, because ultimately they have to want that intrinsic back and forth of communication and relationship, and if they don’t want that, no amount of telling them how to say a word will help them. However, we teach children, all kinds of things, all the time, not least toilet training, good manners, not being violent to others etc… why should we be worried about helping someone with the skill of speaking? My child is clearly so much happier now he can talk, gesture a bit, and we’re having such a lot of fun together now… but I had to make an awful lot of effort to get him interested in interacting with me… and yes I have taught him a bit as well… ! My son was refused entry to school, even with a support worker, and described as a non-verbal child whose case was too severe that the school should dare to take him… it’s so great to be talking with him now!!
It is great to hear that your son learned to speak. This article is in no way advocating not to assist children in learning to speak when they have some capacity to do so, and if appropriate assistance is provided without coercive pressure. Hence “speech and language disabilities that make speech difficult and unreliable (apraxia), which are studied by neurologists who specialise such disabilities”. However there are also non-speaking Autistic people who are disabled to the extent that speech becomes impossible, and that’s where access to Augmentative and Alternative Communication (AAC) becomes important rather than attempting to teach speech.
Independently of all of this, some Autistic children simply start to speak much later than typical, and then learn to speak without any need for assistance. The idea that there is only one “normal” developmental path of milestones that applied universally is flawed. Different children learn different things not only at different rates but also in different sequences.
I learned to speak, but had no desire to speak much in primary school. I had no problems learning, but teachers commented negatively on my reluctance to speak. Even today, I sometimes think that speech is not my first language. Many Autistic people prefer to communicate in writing. We can also lose speech when in overwhelmed, in shut-down mode. We may have selective mutism, not comfortable using speech in certain situations or with some/most people. I love to communicate in diagrams, on whiteboards. Many of us have come to realise the limits of linear language https://autcollab.org/2018/07/28/what-can-be-misunderstood-will-be-misunderstood/.
Thanks Jorn! So pleased to hear you are in favour of teaching skills, such as speaking, when appropriate. Also, I appreciated a lot of factors of this very interesting post you made! From the perspective of a non-autistic parent of an autistic child, I will mention a few more thoughts. I don’t claim to have any more ‘specialist knowledge’ on the subject, other than a lot of wider reading/webinars I have done online. Is there any evidence that apraxia actually has a neurological cause, any more than autism? As I understand it, there’s no evidence for that…. as yet… Likewise the work of the Feuerstein institute in restoring brain injuries, has restored speech to people who doctors said could never speak again, because they had lost all the ‘speech’ part of their brain. The brain is an amazing thing! My suspicion is that apraxia is a diagnostic description of what happens to people when they don’t practice using speech very much. Speech motor skills, just like any motor skills, need lots of practice. If the child is not motivated to vocalise a lot, and practice, then their speech is unlikely to improve. Now, there are all kinds of different subsets of people in this discussion – (not least because the expansion of DSM-5 has led to many, many more people being diagnosed with autism than before) – and that is likely to be the case in any discussion about autism. So I think there are different subsets here:
1) People who don’t have normal development of motor skills, can’t feed themselves, walk etc
For these people it is easy for me to see why speech could be ‘too hard’. For example, if babies don’t learn to talk much before they learn to walk, it makes sense that it would be a step too hard for an adult in that situation
2) People who do have normal development of all other motor skills and can’t talk at all
3) People who can talk a bit (generally in one or two word combinations, occasionally in sentences) but generally choose not to
4) People who can talk fluently but choose not to (always or sometimes)
I chose to separate 3 and 4 even though they seem the same, because my experience has been of a lot of people in category 3 who have a hugely different life experience from those in 4. Category 4, there’s no need to teach them anything. They already have the skills anyway. It’s their choice.
I have little experience with people in category 1, so I have no idea whether I would expend much energy as a parent trying to teach them to speak, although I hope I would expend energy trying to form relationship with them, some way or other. However, category 2 and 3 are significant categories in autism with many, many people falling into these categories, and it seems not to be a motor skills problem, as they can do everything else.
I think these people fall into the ‘lacking intrinsic motivation to relate to others’ category. For cases 2 and 3 generally, (I am generalising, but we are talking about general approaches, so I think that’s OK) my experience has been of people who look like they have less interest in paying attention to others, and less interest in social interaction. This is what happened with my son, he had almost zero interest in social interaction at the age of 3, a few odd words here and there, and delayed, but normal motor skills. There was no interest in paying attention to other people. In which case, it is obvious to see why someone wouldn’t learn to talk properly, because they’re not paying attention. Also, they’re not really interested in social interaction, so communication, other than for my absolute basic needs (water, biscuit) is not happening, because they’re not interested in it. Plus, my son looked deeply unhappy, and would self harm, bite his arm, hit his own head. This cannot be blamed on ABA therapy, because I never enrolled him in that. He was just deeply unhappy, and that appears to be the case with many children in situations 2 or 3, as understandably they’re extremely frustrated that they can’t control their environment more, in the way that others do through speech. What did I do? After six months of discovering he had autism, and feeling really lost, and no real improvement in speech, I found him crawling on top of me at around 6am one morning, and decided to try something an autism specialist had recommended to me, and I had dismissed… I started copying him, using principles developed by an organisation called Intensive Interaction where you follow the child’s lead. It was a bizarre half an hour, but for me, I was enjoying trying to connect with my son, even if he didn’t look like he was enjoying connecting with me, and it was nice to have space without his brothers and sisters around. So I decided to get him up at 6am every morning, on his own, and have ‘copying’ time with me and him for half an hour every day. I did this for 8 months, copying all his actions for half an hour, and it was very surreal… but then something very dramatic happened….. he started to pay attention to me!! He started to hit the floor, and then look up at me to watch me hit the floor, and then he’d hit again, and then look up again!! It was amazing the change!!! He became interested in me, and he developed what I call ‘intrinsic motivation to relate to others’. Now 9 months on from that time, I cannot say that he is absolutely clearly talking yet, but the speech really feels like it is coming. He is vocalising frequently, with gestures, even when he doesn’t necessarily want or need something, he’s just almost chatting, in a scribble talk type way, just like a toddler. So understandably, I’m excited!! Now Terra did a lovely piece on how autistic children are sometimes just delayed and get there in the end and you don’t need to do anything. Now maybe that’s the case for many children… but I know a number of children who have never ‘just got there’ and tragically often are still at stage 3 into adolescence, or even go backwards. And in general, I’m going to be honest, these children do not look like happy children, they look emotionally traumatised, which I know you talked about as the consequence of inappropriate therapy, but also I think it is the result of not being able to relate to others in any way, whether written (as most of the people in stage 3 I find also have weak writing skills) or speech, or any other way, and therefore not being to ‘lead’ what happens in your life, and getting extremely frustrated.
One more observation, at what point should a parent decide ‘speech just isn’t going to happen’ for my child? Look at the case of Jason Arday, the youngest black professor at Cambridge University, who didn’t speak until he was 11, and others who learn even later than that…. how do you decide, I’m not going to try and encourage speech from my child any more? I don’t know the answer for that… but it’s an important point. Jason is so grateful to his Mum for perservering with him, taking him to ST three times a week for years with no apparent value. She stuck there with him, and he’s so grateful now.
Last point for now… AAC devices…. for people in category 1, proabably great…. for people in 2 or 3… hmmmm…. not so sure! I was told ‘the latest research shows that AAC devices do not slow down or impede development of speech.’ Then I looked at how much research there actually is into this… and it’s very weak, poor research. No RCTs, largely very small sample size, anecdotal evidence. So it would have been better if I had been told ‘the latest very limited and weak research shows that AAC devices don’t impede development of speech’. As a parent, sure, if you want to try it, go ahead! But I think we should be careful in saying this is a well researched approach to use with people who don’t speak, or don’t speak much.
Many thanks for the detailed explanations around your experience. I would like to comment on two points:
1. “I started copying him, using principles developed by an organisation called Intensive Interaction where you follow the child’s lead. It was a bizarre half an hour, but for me, I was enjoying trying to connect with my son, even if he didn’t look like he was enjoying connecting with me, and it was nice to have space without his brothers and sisters around.” This is wonderful to read. Learning is always bidirectional. In powered-up industrialised societies, sadly, cultural norms include the assumption that the main direction of learning involves knowledge flows from parents to children. If this assumption dominates parent-child interactions, it teaches children that their own perspective, agency and curiosity is unwanted, and is dismissed. I remind parents that this cultural bias is harmful to children, especially to Autistic children. Honest parents acknowledge how much they learn from observing their young children explore the world. Taking the time to connect with your son by following his lead was exactly the right thing. This approach of learning from children rather than teaching children is what comes intuitively to most (all?) Autistic parents. It teaches children that their perspective, agency and curiosity is wanted and of interest to others. Children are born explorers, and imposing schedules and demands on Autistic children that negate their drive to explore on their own terms, of which ABA is an extreme example, is harmful and traumatising. Following the lead of your son, when used consistently over time, has likely signaled to your son that it may be worthwhile attempting to learn to speak, even if it is challenging.
2. From a very young age and throughout all of life, Autistic people in our society are exposed to the (hyper) neuronormative cultural pressure to “try harder” to fit in or to “conform” to cultural expectations that are detrimental to our wellbeing. This is an enormous source of stress and trauma. The most important message that most Autistic children and adults need every day is “don’t try harder, don’t be too hard on yourself”. It is in this context that parents should evaluate whether it is appropriate to continue active efforts of teaching children to speak. Regarding the use of AAC, the main people to listen to and to ask for advice are AAC users. Their lived experience is what counts when it comes to assessing how much active effort should or should not be spent on encouraging children to learn to speak. We should also not forget that Autistic culture is a culture that appreciates those whose first language is not speech, where respect for individual communication and social interaction preferences is the norm, and where interactions with the neuronormative social world are acknowledged as a major source of stress.
Nicely said Jorn! I really agree with you about the copying, following my son’s lead, leading to my son’s feeling inspired to start talking. I am not as confident as you are of autistic children’s parents natural inclination to know what to do with their children. I don’t think I would have started copying him, if it hadn’t been for an autism expert recommending it to me. Also, my experience over the last year has led me to several parents, who I was concerned were not letting their kids lead in any way, and they weren’t particularly interested in advice from me, and all their kids fell into category 3, unable to express themselves well in any form of communication. Let’s hope the message about the importance of letting kids lead, autistic or not, gets out more widely in the next few years!
The extent to which Autistic parents intuitively approach their children from a perspective of Autistic ways of interaction or from the perspective of neuronormative cultural expectations depends on the extent to which parents have freed themselves from internalised ableism.
Autistic culture evolves from the bottom-up, with every Autistic child that is allowed and encouraged to discover the world on their own Autistic terms. In stark contrast, in industrialised societies, massive cultural expectations are imposed on children from the top down. From an Autistic perspective the entire mainstream education system is a form of “ABA lite”. Autistic people, including children, don’t aspire to many of the things that are seen as desirable by culturally well adjusted people, such as “jobs” and “careers” in traditional “employment”. Beyond the sensory overload, many of us can’t cope with the cognitive dissonance of being expected to do things that conflict with our moral compass and our sense of fairness. It is no mystery why we suffer from depression, GI problems, migraines, insomnia, anxiety, eating disorders, etc. We are acutely aware of the limitations of language and the double empathy problem. Here is a timeless quote from Jasmine Lee O’Neill, a mute autistic savant, poet, writer, illustrator and musician:
“I have gained extensive experience simply by living with fairly severe autism for my lifetime. Difference can be wonderful, and autism shouldn’t be tampered with, or altered. Autistic people shouldn’t be changed. The autistic individual certainly has a right to this special home within. It is not a dream world as some dictionaries imply. It’s not a spot in the mind filled with hallucinations. Rather the person sees what is around him with extra-acute sight. An autistic experiencing the outside world experiences it as surreal, not as a made-up work of art in the mind. You can’t judge the world of another as inferior, because you don’t live in that world. The autistic world is comfortable. It is a safe place to ground oneself in. Autistic children can keep their inner sanctuaries, as well as grow and learn, and become educated. It is a very bad idea to force one’s way into an autistic’s world. That is a grave threat to the autistic person. … All things coming from the outside must be gentle, sometimes devoid of emotion, so as to not overwhelm.”
– Jasmine Lee O’Neill, 1999
Terra did a lovely piece on how autistic children are sometimes just delayed and get there in the end and you don’t need to do anything. Now maybe that’s the case for many children