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- What is ‘autism’?
- How many people in Aotearoa are Autistic?
- What does it feel like to be Autistic?
- What behaviour or communication makes Autistic people seem ‘different’?
- Does autism need treating, or therapy?
- What is neurodiversity?
- What is ‘normality’, or ‘hyper-normality’?
- What is Applied Behaviour Analysis (ABA) or Positive Behaviour Support (PBS)?
- Where did conversion therapy come from?
- What was it like to be Autistic in the 1970s?
- What has changed since the 1970s?
- What are the effects of ABA on children?
- Why is ABA inhumane?
- Why do people support ABA?
- Why is ABA not banned like gay conversion therapy?
- Why is ABA funded or encouraged by the government?
- What do people with autism say about ABA?
- What is the Diagnostic and Statistical Manual (DSM)?
- What would Aotearoa be like without ABA?
- What does a world without ABA look like for parents, and for Autistic people?
- How can we be as a society that includes everyone?
- What are the alternatives to ABA?
- How can parents of Autistic children be supported?
- How can we update our education system?
What is ‘autism’?
Jorn Bettin: Autistic people are a kaleidoscope of human neurological variants that can not be understood without the social model of disability, i.e. recognising that Autistic people are often disabled by economic, environmental and cultural barriers.
All Autistic people experience the human social world differently from typical individuals. The difference in Autistic social cognition is best described in terms of a heightened level of conscious processing of raw information signals from the environment, and an absence or a significantly reduced level of subconscious filtering of social information.
Alice Richardson: Totally agree. I also want to add to this what Autistic people are not, as I think it’s important to bust the stereotypes that continue to be perpetuated. Autistic ways of being are not understandable in terms of external behaviours. Similarly, perceived social awkwardness is a function of the lack of inclusiveness of the surrounding culture.
Autistic ways of being also aren’t something that can or should be treated. It also isn’t something that can or should be treated. Autistic people simply experience the world differently to how non-autistic people do. This means we don’t fit into the boxes non-autistic people expect us to in many and varied ways. So we tend to stand out from the crowd – whether we want to or not.
Jolene Stockman: ‘Autism’ is a way of being in, and processing the world. And even though Autistics are all individuals with different specific strengths and needs (some of us like tight hugs and some of us don’t like to be touched, some of us feel pain intensely, some of us can withstand huge amounts of pain, some of us are hyperlexic and some of us don’t use words, etc.), what we all have in common is a very different way of experiencing the world. This is why so many of us resonate with takiwātanga – in his/her/their own space and time (developed by Keri Opai). Takiwātanga provides language that honours how we feel, and how to be with us, as a way of being within a culture of people.
Jorn Bettin: It is so important to debunk the myth that Autistic people lack empathy. Non-autistic people have as much difficulty relating to our experiences as we have relating to theirs, and we have as little difficulty relating to the experiences of other Autists as non-autistic people have difficulty relating to other neuronormative people. Damien Milton frames the mutual communication challenge as the double-empathy problem.
What neuronormative people usually don’t realise is that over 80% of our social interactions are with neuronormative people, and involve a double-empathy gap, whereas at most 20% or their social interactions involve a double-empathy gap. This goes a long way towards explaining why communication is so much more exhausting for Autistic people than for other people. We continuously have to put conscious effort into not being misunderstood in major ways. It also explains why we are so much more at ease in Autistic community.
How many people in Aotearoa are Autistic?
Jorn Bettin: Autistic people exist in all societies. The latest studies indicate that around 1 in 30 people are Autistic. This means in Aotearoa we’ve got over 150,000 autistic people across all age groups.
What does it feel like to be Autistic?
Jorn Bettin: Like all children, Autistic children are inquisitive and love to explore and learn about the world. Autistic people don’t internalise social norms subconsciously as much as others. We remain curious throughout life and are intrinsically motivated. “Why?” remains our favourite question, especially when people expect us to follow specific social conventions that don’t seem to make any sense to us.
Many Autistic people are hyper- and/or hypo-sensitive to certain sensory inputs from the physical environment. This further complicates social communication in noisy and distracting environments.
With respect to Autistic sensory sensitivity there are huge differences between Autists. Some Autists are bothered or impaired by a broad range of different stimuli, whereas others are only impacted by very specific stimuli.
Alice Richardson: Prior to finding out I’m Autistic, I always felt like I was weird compared to the people around me – but only because that’s what they were telling me.
When I found the Autistic community, I found loads of people who think and communicate in the same sort of way as me. It was very reaffirming to find out some of the coping techniques I had been using throughout my life (but kept hidden for fear of being reprimanded) were common among other Autistic people. It’s made it easier for me to look after myself and my mental health as I’ve learnt from other Autistic folks the reasons behind why I did things and how they were actually good for me, despite them seeming a bit “strange” to the other people around me.
Also, each Autistic person might use different mediums to communicate – but nevertheless I feel like when I talk to Autistic people we understand each other. It isn’t confusing or difficult – even when we disagree.
So when I’m around other Autistic people I just feel normal, I feel happy and secure – but around non-autistic people I feel like the odd one out and mostly not well understood.
I see ‘autism’ as a neutral state – the world just isn’t designed for us, so it follows that I’m disabled. Since finding the Autistic community, I’ve learnt to better adapt my surroundings and help my family know what I need them to do to accommodate me. But the reality of day to day life means that I still need to put myself in situations that don’t suit me as an Autistic person.
What behaviour or communication makes autistic people seem ‘different’?
Jorn Bettin: Autistic neurology shapes the human experience of the world across multiple social dimensions, including social motivations, social interactions, the way of developing trust, and the way of making friends. Others can perceive our lack of conformance to social conventions and lack of participation in small talk as odd or weird.
There is a good chance that the obviously “weird” kid in a classroom is Autistic. We can be unusual in many different ways. Every one of us has a unique sensory experience of the world, and our interests and talents vary widely. Educators sometimes refer to spiky Autistic skill profiles. Autistic children don’t necessarily develop according to the standardised plans and milestones laid out by the education system. That’s nothing to be alarmed about. Different developmental paths should rather be appreciated as manifestations of human diversity.
Alice Richardson: Sometimes we try to blend in as non-autistic, but we can’t possibly get it exactly right, so sooner or later people will notice we are just different.
We are often purposeful and interested when we’re having a conversation, but we don’t tend to use the same kinds of facial expressions or tones in our voice as non-autistic people – at least not naturally. So I think this can catch people off guard.
For example, I recently learnt that my partner struggles to gauge my level of enthusiasm about things I talk about.
I don’t have this problem talking to Autistic people who are listening primarily to my words and also understand what my face is doing!
For the most part, if you’re talking to an Autistic person, you’ll only need to listen to the words they are saying in order to understand them.
Does autism need treating, or therapy?
Jorn Bettin: There is no need for treating Autistic neurology, for exactly the same reasons that there is no need to treat left-handedness or gender-non conforming people.
Alice Richardson: There are misconceptions that an ‘autism’ diagnosis means a young child must be rushed into ‘early intervention’ treatment or therapy, but this is not true. Just like any other child, Autistic children will develop and learn at their own pace and this will likely look different to what you would expect for a non-autistic child. That’s OK.
‘Autism’ can’t be treated and nor would there be a desire to treat it if people understood it properly. The best thing you can do for your child is to listen to, accept and love them as they are. Research shows that appreciating us as we are prevents serious mental health issues. Most of the set backs we experience in life come from the way we are misunderstood, shamed into hiding our normal way of being and pushed into situations that cause us sensory overload.
Sarah Bettin: If Autistics who have apraxia/dyspraxia articulate a desire for support, they should be offered support in the form of occupational therapy, helping them to build the neurological pathways that allow them to communicate their thoughts, set their own goals, and explore new tasks.
What nonspeaking Autistic children really need is a means of independent communication. This might include ‘Augmentative and Alternative Communication’ (AAC), which utilises low tech assistance or assistive technology. Many nonspeaking Autistics benefit greatly from learning to communicate using spelling and typing. It is important to ensure that Autistics have a method of independent communication. People of any age are likely to benefit from assistive technology and it is never too late to start.
The website of the International Association for Spelling as Communication (I-ASC) provides further information on this topic. In Aotearoa the team of the TalkLink Trust are specialists in the area of Communicative Assistive Technology / Augmentative and Alternative Communication (AAC).
Jolene Stockman: Like any disability, Autistics have support needs. But our challenges don’t come from ‘autism’, they come from navigating a world that is designed for neurotypical brains. So yes, please help us translate neurotypical social rules and communication. Please support us to protect ourselves from the sensory onslaught of everyday life. Let us find ways to communicate that work for us. But don’t tell us our experiences aren’t real. And don’t try to make us ‘normal’ so you can be more comfortable.
Any ‘treatment’ ‘therapy’ or ‘cure’ that aims to make us appear ‘not autistic’ should raise red flags. Autistics are not broken or less-than, and the only thing we ‘suffer from’ is other people’s ignorance. Lots of Autistics benefit from treatments and therapy. But not because we’re Autistic, because we’re human.
What is neurodiversity?
Jolene Stockman: Neurodiversity is a biological characteristic of human beings. The word was coined by Australian Judy Singer (1998) and it is the understanding that humans are diverse, varied, in their brain function. Neurodiversity is some people running on Linux, other people on Windows, some on Mac, others using combination of systems, and still others programming completely new system from scratch.
Neurodiversity can be innate (e.g. autism, attention hyperactivity, dyslexia, giftedness, Tourette’s) or acquired (trauma, long-term meditation, mental health). No operating system is wrong, just different – and all come with different strengths and challenges. Every way of processing the world is natural and valuable.
Jorn Bettin: Neurodiversity is the diversity of human brains and embodied minds – the infinite variation in neurocognitive functioning within our species. Members of the Autistic civil rights movement adopt a position of neurodiversity that encompasses a kaleidoscope of identities that intersects with the LGBTQIA+ kaleidoscope. We recognise Autistic traits as natural variations within the human species.
What is ‘normality’, or ‘hyper-normality’?
Jorn Bettin: The definition of normality in the industrial era is based on the metaphor of society as a factory and on the metaphor of people as machines. Our laws and social norms have been shaped by these metaphors to a far greater extent than most people realise.
Looking back over more than 50 years of lived experience, I have to conclude that society has become increasingly normative in many ways. The term “hypernormalisation” was coined in the Soviet era, and transposed into the Western context in an extended documentary by Adam Curtis (2016).
The cult of competitive consumerism within industrialised societies ironically leads to extreme levels of groupthink amongst the non-autistic population. In our society everyone wants to be seen as unique, but mass customisation prescribes the limits of acceptable variability in virtually all aspects of life. The expectation of conformance to cookie cutter templates extends far beyond physical goods into the realm of public human behaviour and conformance to unspoken social norms.
Autists depend on assistance from others in ways that differ from the cultural norm – and sadly that is often pathologised. At the same time, the many ways in which non-autistic people depend on others is considered normal, and is systematically brushed under the carpet.
What is Applied Behaviour Analysis (ABA) or Positive Behaviour Support (PBS)?
Jorn Bettin: ABA or PBS are common terms used to refer to “conversion therapies” for Autistic children, i.e. pseudoscientific practices of trying to reprogram Autistic children. The motivation for these so-called therapies is the same as the motivation for gay “conversion therapies”, which thankfully have been banned in a growing number of jurisdictions in recent years. The objective of Autistic conversion therapy is always to deny and eradicate Autistic ways of being human as a valid forms of existence.
Where did conversion therapy come from?
Jorn Bettin: This is a great question. Ivar Lovaas developed autistic “conversion therapy” in the 1960s in California. His level of understanding and appreciation of Autistic people is summarised in the following quote from an interview he gave in 1974:
“You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense — they have hair, a nose and a mouth — but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.”
What most people don’t know is that in the early 1970s Ivar Lovaas and his colleagues went on to experiment with the same techniques on gender-non-conforming children, and that this set in motion the proliferation of gay “conversion therapies” in the 1970s. Many Autistic or gay people who have been subjected to “conversion therapies” end up with PTSD. Kirk Andrew Murphy, one of the first children subjected to gay “conversion therapy” committed suicide in 2003 at the age of 38.
What was it like to be autistic in the 1970s?
Jorn Bettin: In the 1970s the work of Lovaas and his colleagues in the US received funding from religious groups with extreme beliefs regarding sexuality and gender roles. This is not really surprising. What is quite incomprehensible and infuriating is that fifty years later, here we are, and the same techniques are still used on Autistic children in North America, the UK, Australia and New Zealand.
On the one hand some parents in the 1960s and 70s experimented with anti-authoritarian parenting techniques, but on the other hand there was a strong backlash against these seemingly concerning trends.
You have to realise that Autistic children in particular don’t react in the desired way to punishments and rewards. This applies to social pressure from parents as well as from peers. I was a hypersensitive child in the 1970s when the label of ‘autism’ was not widely used. Punishments only alienated me from my parents. I also did not understand the bizarre competitive social games played by other children, which are a logical consequence of the heavy reliance on incentives and rewards in our education system.
I actively avoided most interaction with others my age. It was obvious that my world had little in common with the world of those around me. I considered myself lucky if others left me alone, and I learned to make myself invisible to others in plain sight. I still remember with horror the occasions when my parents met other families with children and enthusiastically prodded me to play with the other children. They had no idea of the kind of environment I needed to feel safe. I could not even trust my parents. Too often they surprised me with their absence when I needed support, or with overwhelming social situations, expecting me to conform to cultural rituals that made no sense to me.
What has changed since the 1970s?
Jorn Bettin: I would say the conformance pressure has increased even further, but I am not sure how obvious this is from a neuronormative perspective.
Understanding the Autistic perspective is only possible by discarding the assumptions about humans made by outdated behaviourist pseudoscience, and by appreciating that Autistic children are intrinsically motivated.
In a competitive society, Autistic children develop a very dim view of humans at a very young age. We are less capable of playing the deceptive competitive social game because we don’t get the same neurochemical kick out of winning. Many Autists are hyper empathetic. We treat others as equals and expect to be treated as equals. The whole notion of social power gradients is foreign to us.
It does not help that Autistic minds are monotropic. We focus our attention on one activity at a time, and tend to ignore things outside of our current attention tunnel. This can make us seem aloof or arrogant, and even highly competitive at times. In reality our brains are just not wired for rapid task switching or for quick spontaneous reactions to new inputs or external demands. This does not mean that Autists don’t see the big picture – many of us care deeply about social justice and ecological concerns, but rather that Autists are quickly overwhelmed by the task switching demands in social situations with more than two people.
Like many Autists I am an autodidact. Not being interested in social games means that I have to force myself to pay attention to competitive behaviour, and the act of doing so is extremely draining and has an immediate negative impact on my mental wellbeing. I was in my twenties when I started to realise how much neuronormative people rely on copying behaviour that they see or experience in their social environment, and it took me at least another ten years to figure out that this has a lot to do with the conception of life as a competitive social game.
Unless we learn to give Autistic children access to other Autistic children and adults as early as possible in their life, and unless we start to address the root causes of depression and suicide in industrialised society, Autistic children will continue to be severely traumatised. This explains why Autistic rights activism and neurodiversity rights activism are so important.
What are the effects of ABA on children?
Jorn Bettin: Half of them meet the diagnostic criteria for PTSD. The trauma caused by ABA is severe.
Alice Richardson: As part of this trauma, it causes children to lack a sense of identity, even once they reach adulthood. ABA teaches Autistic children that what they think, do and need is incorrect, so it’s not possible to ever trust and rely on themselves to make decisions. Thus they are taught to over rely on their parents and to always look outwards for approval. You can imagine the terrible and varied repercussions this would have on someone throughout their life when they feel they can’t trust their own brain.
Also, ABA systematically teaches children to mask. Given the massive amount of energy masking takes, it’s setting them up for more meltdowns and an endless cycle of poor mental health.
Additionally, like any abusive relationship, ABA primes Autistic children to be vulnerable to further abuse from a very young age, by taking away their autonomy and teaching them to trust and value all others over themselves.
Why is ABA inhumane?
Jorn Bettin: Lovaas’ quote above says everything that needs to be said on that topic.
ABA proponents like to point out that ABA has evolved, that modern ABA or “Positive Behaviour Support ” can’t really be compared to the techniques used by Ivar Lovaas fifty years ago. But this line of reasoning is deeply flawed. No amount of sugar-coating can gloss over the fact that the goal of modern ABA remains to train Autistic children to copy “desirable” (culturally expected) behaviours and to suppress “undesirable” (Autistic) behaviours. All autistic conversion therapies, no matter what techniques are used, dismiss Autistic ways of being as undesirable, wrong, and culturally unacceptable.
ABA can’t be improved. It needs to be made illegal. Autistic people need to be involved in setting the ethical standards for any research that relates to Autistic people. Otherwise we’ll just see government funded research that spawns new variants of autistic conversion therapy.
Alice Richardson: ABA is not a therapy designed to help Autistic children, it’s designed to make them more palatable to wider society.
First of all it relies on the idea that if people are different from one specific mold then that means something is wrong and needs to be fixed. ABA practitioners reasons for changing rocking behaviour for example: “because it’s disturbing”. As an Autistic person, I don’t find someone rocking disturbing in the slightest.
The actual practice of it has children punished or rewarded for performing the behaviours requested of them and this can be done either physically or psychologically. Notably many of the same techniques used in ABA have already been deemed too cruel for use on animals.
Why do people support ABA?
Jorn Bettin: ABA has become a global multi-billion dollar industry in the US. This industry not only operates a powerful PR machine that perpetuates the use of ABA, it also funds related “research”. The proponents of ABA tap into the fears of vulnerable parents who are concerned that their children are falling behind or don’t meet the milestones of a very narrow social construction of normality.
ABA is a sad example of what happens when education and academic research deteriorates into a profit oriented business.
Alice Richardson: ABA supporters talk about how their ABA is different to the old kind or it’s person-centred, evidence informed, and so on.
They also talk about how it helps certain children with ‘severe autism’, or that it stops damaging behaviours like head banging.
But when you look at the application of it and the motivation behind it, it still boils down to this principle that Autistic people need to be fixed. Whereas an Autistic person would know how to kindly and humanely help their child find a way to get the sensory input they need, an ABA practitioner chooses shame and/or punishment as their method to stop that behaviour.
Supporters of ABA also actively ignore and play down the elephant in the room, which is the trauma ABA is proven to cause. Instead they talk up how it helps children to blend in with society and imply that it’s somehow damaging or risky to not do ABA.
Thankfully, unbiased research – so that done by people who aren’t ABA providers or aligned with ABA providers, is finally now making its way into scientific journals, so these myths are starting to be broken down in mainstream academia.
Why is ABA not banned like gay conversion therapy?
Jorn Bettin: If gayness or queerness is the result of not conforming to narrow conceptions of sexuality and gender roles, then Autistic ways of being can be understood as not conforming to narrow conception of a functional human in the sense of homo economicus, a convenient abstraction that was created to serve a the economic ideology of the early industrial era. Our society has yet to come to grips with the gap between the biological and cultural diversity of homo sapiens and the fiction of homo economicus.
Alice Richardson: Autistic people are still a bit of an unknown to wider society so I think a lot of the time people just take the advice of whoever has the loudest voice or biggest platform. People who are actively pro ABA still see Autistic people as a group of behaviours that need to be fixed, treated, cured or removed from the gene pool and this is more or less the message they send out to the wider public – who tend to believe them.
So it’s an easy thing to present ABA as a “solution” to worried parents and, say, the Ministry of Education who are expected to do some kind of action that addresses the “problem”.
The other hurdle we face in New Zealand is that even as it becomes a bit more widely known how damaging ABA is people are now renaming it to fly under the radar. So even though certain organisations have openly agreed that ABA is bad, they’re actually still enabling it – simply taking the same methods and ideals Lovaas used, but relabeling and repackaging them.
There’s still funding in “fixing” the perceived problem of autism as opposed to simply supporting and accommodating Autistic people. So until that idea changes, it will be very difficult to stop people from causing this unnecessary trauma to innocent children.
Why is ABA funded or encouraged by the government?
Jorn Bettin: The government will be tempted to fund ABA and other conversion therapies as long as our economy optimises for busyness and not for happiness.
In Aotearoa New Zealand the Living Standards Framework (LSF) which has been incrementally developed since 2011 is starting to influence the formal conception of wellbeing that shapes legislation, but cultural evolution is a slow process that plays out over decades. The LSF covers 12 domains of wellbeing, but the political discourse is still centred around traditional economic metrics.
In this context the unmet public health needs and the social challenges that have been highlighted by COVID could act as a catalyst for a rethink of what it means for communities to thrive and for humans to live healthy and fulfilling lives. This could be an opportunity for mainstream society to rediscover that communities are enriched by all the people who don’t lead cookie cutter lives of busyness and conspicuous consumption.
Alice Richardson: The narrative around ‘autism’ has been where we either live in misery and are in need of saving or that we need to be controlled and changed. The government is and always has taken its advice from the people who perpetuate these ideas. You can see this in the frantic push for ‘early intervention’ in autistic children. They’re convinced that if someone intervenes early enough, children will grow up to be completely free of ‘autism’. Which is obviously untrue.
The “New Zealand Autism Spectrum Disorder Guideline” links to plenty of biased and now debunked research about the benefits of ABA and includes a supplementary paper stating that ABA should always be considered.
This is a good example of what happens when you leave out marginalised voices.
Autistic people are often completely left out of conversations and decisions that concern us, or people will allow one or two of the most agreeable Autistics to have a seat at the table as tokens.
What do people with autism say about ABA?
Jorn Bettin: By the way, Autistic people don’t ‘suffer from autism’. We don’t ‘have autism’ or come ‘with autism’. We are Autistic, we suffer from pathologising labels and stereotypes that negate our humanity. ‘Autism’ is not a disease or disorder, it is a different way of being. The Māori word for Autistic ways of being is takiwātanga, meaning ‘in his or her own time and space’.
You have to look long and hard to find any Autistic person who would endorse ABA or other forms of autistic ‘conversion therapy’.
Living in a society that pathologises Autistic ways of being is depressing. This is reflected in the mental health and suicide statistics of autistic people. Anxiety and depression are not symptoms of Autistic neurology, they are symptoms of a sick society that views Autistic people as defective and disordered. A society that does not care about the physical, mental, and social needs of Autistic people and that tries to eradicate these needs is not a world that I want to live in.
What is the Diagnostic and Statistical Manual (DSM)?
Sarah Bettin : Apparently the DSM is maintained by an assembly of doctors, half of them I heard have links to the pharma industry (to be verified), deciding by vote on what ‘disorders’ to include. The DSM looks at the individual as something to be fixed and blends out the societal and political aspects that surround the individual.
What would Aotearoa be like without ABA?
Jorn Bettin: Aotearoa could be a much more diverse place. The diversity of our communities would mirror the diversity of the landscapes and the ecosystems that we are part of. Our education system would look very different and the roles of educators would be quite different. We would start to appreciate teachers who connect with and nurture the intrinsic motivations of our children, teachers who would assist our children in carving out unique life paths that match their interests, their sensory needs, and their social needs.
Sarah Bettin: Monies wasted on training ABA technicians would become available for better means of support. No more money wasted on research which is unwanted by the Autistic community. Autistic people would be sitting on the governing boards of organisations that represent the interests of Autistic people.
What does a world without ABA look like for parents, and for Autistic people?
Jorn Bettin: Parents would not need to freak out about the future of their Autistic children, because society would have a place for everyone, including those with unusual sensory profiles and those who don’t communicate in spoken language in the usual way.
Autistic people would not be compelled to mask their identity all the time when they are in public view. We would be free to stim, rock, laugh, cry, or retreat to a safe quiet place when and where we need it. We could opt out of small talk without being penalised, and we would not be dismissed as rude or defective if we don’t conform to unspoken social expectations. Perhaps people would be curious to learn more about our intrinsic motivations and our unusual interests.
How can we be as a society that includes everyone?
Jorn Bettin: A culture that is inclusive of Autistic people is a culture that is inclusive of all divergent people – of people with different cultural backgrounds and of different abilities and limitations.
Autistic people create culture one trusted relationship at a time. We don’t think in terms of abstract group identities (nationality, ethnicity, class, professions, favourite sports teams, etc.). When I meet with a person I primarily interact with another unique human rather than with an abstract instance of one or more cookie cutters. In industrialised societies this relational quality of life has been lost or suppressed, and I think this is at the root of social injustice and most social tensions.
What are the alternatives to ABA?
Jorn Bettin: A personalised low arousal approach that nurtures and supports the child’s intrinsic motivations and sensory needs eliminates the perceived need for something like ABA. All children thrive when given the chance to explore the world instead of being focused on obedience and submission to arbitrary external authority.
For an Autistic person the pathway towards good company can be distinctly different from the life trajectory mapped out by the expectations of mainstream culture.
Sarah Bettin: Alternatives can also include supports such as helper dogs and access to augmentative/ alternative communication (AAC) tools for nonspeaking Autists.
Additionally, if Autistics who have apraxia/dyspraxia articulate a desire for support, they should be offered support in the form of occupational therapy, helping them to build the neurological pathways that allow them to communicate their thoughts, set their own goals, and explore new tasks.
Apraxia makes people unable to carry out everyday movements and gestures, and dyspraxia is the partial loss of the ability to coordinate and perform skilled, purposeful movements and gestures with normal accuracy. This also affects a person’s ability to speak.
Many nonspeaking autistic children are being treated under the behavioural modes (i.e. ABA, PBS etc.), but what they really need is a means of independent communication.
The website of the International Association for Spelling as Communication (I-ASC) provides further information on this topic you might find interesting. In Aotearoa the team of the TalkLink Trust are specialists in the area of Communicative Assistive Technology / Augmentative and Alternative Communication (AAC).
How can parents of Autistic children be supported?
Sarah Bettin: Parents who grieve for having an Autistic child should receive counselling so that they can give unconditional love and fully embrace their child without judgement. Parents can learn to become confident that they are able to learn how to communicate with their child.
Jorn Bettin: The first thing that parents should do is connect with the community of Autistic adults and Autistic parents. We know how to raise healthy and confident Autistic children. Many of us have compiled freely available learning resources for parents.
Learning is a two way street. Always. For Autistic children the primary direction of social learning is reversed. New discoveries about the world are communicated from children to parents. Autistic children educate their parents about their sensory experiences and about the focus and boundaries of their innate curiosity about the world.
Additionally parents may need support from employers and the government, for example in terms of flexible working arrangements, and in terms of public schools that offer personalised learning environments for Autistic children, with access to Autistic teachers and mentors.
Sarah Bettin: Yes, parents need sufficient time to bond with their child. There should be plenty of time to just be and play at home.
How can we update our education system?
Jorn Bettin: We have created education factories that focus almost entirely on replication and compliance. However, humans have evolved as part of highly diverse ecosystems, i.e. we have evolved to survive and thrive in highly diverse contexts, rather than as part of super human scale monocultures, i.e. nation states, transnational corporations, and physical environments dominated by industrialised agri-monocultures.
The word ‘performance’ points towards the outcomes the system achieves: cohorts of human cogs that act and function in highly predictable and uniform ways, to fit the needs of the entities that benefit from the education system. Increasingly education is shaped by the desires of transnational corporations. This needs to change.
Not only does a strong reliance on formal education detract from the locally relevant context, it also squashes human creativity and curiosity. The more an education system myopically relies on formal evaluation and comparative ranking systems, the more it instils a hyper-competitive mindset that actively steers people away from appreciating diversity, from learning how to collaborate, and from nurturing and maintaining lifelong trusted relationships.
The documentary Schooling the World (Carol Black, 2010) provides an excellent introduction to the history of modern formal education systems, and the webinar Education: Promises, Myths and Realities (Manish Jain and Helena Norberg-Hodge, 2016) looks into possible avenues for undoing the damage of misguided education.