The Autism Explained Summit 2020 was a 5-day free online conference which aimed to improve caregivers' relationships and ability to support their autistic children. The conference featured more than 20 speakers with first-hand knowledge and experience across the autism spectrum. The summit was hosted by Paul Micallef, who discovered he was on the autism spectrum 4 years ago.
Organisation Website: https://www.autismexplained.com.au
Organisation YouTube: https://www.youtube.com/channel/UCPg4IbOtHUw3yWTuwTh5b5Q
Personal Website: https://aspergersfromtheinside.com
Personal YouTube: https://www.youtube.com/c/AspergersfromtheInside/
Day 4 focused on understanding autism.
The Double Empathy Problem - Dr. Damian Milton
After the speaker’s son and himself received their autism diagnoses, he came across the theory of mind hypothesis, but felt it was only a partial explanation. Instead, he coined the term ‘double empathy problem’ to describe how a breakdown in communication can happen between any two people if they have differences in cognition and experiences, not because there is an innate problem with one person. This explains why there might be problems in social interactions between autistic and non-autistic people, whereas autistic people share some similar experiences and thus have greater potential for empathising with and understanding one another.
In a predominantly non-autistic culture, there is an imbalance in power. The blame is often placed on autistic people for their so-called abnormal behaviour and lack of social skills. Although autistic people may need help understanding where other people are coming from, they should not be pressured to conform to others’ social expectations. Masking is exhausting, stressful, and bad for autistic people’s self-esteem, as they internalise the idea that their way of being is wrong or inadequate and that they should act in unnatural ways. If a non-autistic person were to be placed alone in a predominantly autistic space, he would also feel out of place and find it difficult to navigate. The ‘double empathy problem’ hypothesis therefore involves a paradigm shift in defining autism, from viewing an autistic individual as having communication deficits and requiring intervention, to placing more emphasis on the surrounding people and environment.
Some research has been done in this area, coming to similar conclusions through various disciplines and experimental methodologies.
In Noah Sasson and colleagues’ study on first impressions of adults with autism, the researchers assessed first impressions of autistic and typically developing controls made by typically developing observers when their diagnostic status was either withheld, accurately provided, or inaccurately provided. The study found that first impressions for autistic adults improved with diagnostic disclosure and increased autism understanding on the part of peers.
In Catherine Crompton and colleagues’ study on peer-to-peer information transfer, pairs of people passed messages back and forth between them. There were autistic-autistic pairings, mixed autistic-non-autistic pairs, and non-autistic-non-autistic pairs. The study found that autistic people did just as well communicating with each other as the non-autistic people did with each other, but errors escalated in mixed autistic-non-autistic pairs.
In Brett Heasman and colleagues’ study on two-sided perspective-taking, people with Asperger’s syndrome and their family members were asked about different topics in terms of one’s rating of Self, one’s rating of Other and one’s predicted rating by Other. The study found that the autistic young people could understand and predict what their parents were thinking and putting attention to, better than the parents could. Some of the dominant explanations about autism, such as theory of mind difficulties, prevented the parents from fully understanding or giving credit to their children. Brett Heasman also created an animated video discussing this study.
In Brett Heasman and colleagues' study on neurodivergent intersubjectivity, autistic adults’ conversations were recorded while they played collaborative video gaming. The study found that the autistic adults shared a similar communication style in which they assumed common ground, as well as gave more leeway and less judgement when interaction breakdowns occurred.
Parents tend to be in a predicament, as they are judged by outsiders for the autistic child’s behaviour, and it is hard not to have expectations for the autistic child to behave in a so-called normal way. Nonetheless, parents should try to understand the autistic child and work with the autistic way of being, such as by learning about the autistic children’s sensory perceptual differences, predictability issues, as well as likes and dislikes. Practitioners like teachers and support staff need to be humble about their professional expertise, learn from the autistic child, and personalise their approaches. The autistic child is the best expert on himself, and parents can also be a good source of information other than observational checklists and functional assessments. There has to be better communication among everyone involved with the autistic child’s life, and understanding someone has to come from a place of humility. To quote Phoebe Caldwell, a practitioner in intensive interaction, ‘Every time I meet a new person, I am a beginner.’
Personal Website: https://damianmiltonsociol.wixsite.com/dmilton-autism
Organisation Website: https://participatoryautismresearch.wordpress.com
What is Neurodiversity? - Judy Singer
The speaker coined the word ‘neurodiversity’ 20 years ago in her sociology honours thesis, when psychotherapy was waning and neuroscience was on the rise. ‘Neurodiversity’ refers to the infinite variability of human nervous systems and how no two people are exactly alike. Just like how the term ‘biodiversity’ was coined for a political purpose to argue for the conservation of animals and plants for environmental sustainability, ‘neurodiversity’ can be seen as a subset of ‘biodiversity’, highlighting the importance of honouring human diversity. This marks a paradigm shift in how we think about autism.
20 years ago, there were only 3 categories of disability – intellectual, physical, and mental illness. Classical autism was categorised under intellectual disability, which was not a good fit for many autistic people who felt excluded. Even now, with the DSM 5 and autism spectrum disorder diagnosis categories, there is still a lot of contestation about who is autistic as it is so broad, ranging from so-called severely autistic individuals to more articulate individuals with Asperger’s Syndrome. The speaker speculates that the term ‘autism’ is actually an artefact of the welfare system, in that people need to reduce themselves to a label to get the kinds of services and supports they need.
‘Neurodiversity’ is a new word for some straightforward principles. One principle is about treating people as a fair and just society, based on each person's needs and abilities.
This is reminiscent of the old 19th century dictum sometimes attributed to Marx, ‘From each according to their ability, to each according to their needs.’ Another principle is about self-awareness and social awareness, as mentioned in the serenity prayer, ‘Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.’
A key message of the neurodiversity movement is that the autistic population is not a broken version of neurotypical. Just like how people of ethnic backgrounds sometimes pass as looking white, autistic people can mask but at a great personal cost. With the neurodiversity movement, parents are under less pressure to make their autistic child conform. Parents should support their autistic child by letting him be himself and not allowing anyone make him do things he is not ready to do. Parents need to observe, believe, and protect their child, such as if the child says he is too tired to go to school or work.
Some people mistakenly think that ‘neurodiversity’ means ‘neurological disability’, creating an othering sort of dichotomy. We have a risk of ‘neurodiversity’ being just used as a buzzword and losing its powerful initial meaning, which is that we are all different but we are all human. Autistic people do not have a theory of neurotypical minds, but neurotypical people do not have a theory of autistic minds either. We are all equal and learning to bridge the gap as awareness rises. Hopefully, we can discover more methods of communication for autistic people from the whole spectrum, so we can hear more personal narratives from autistic people, such as via the Internet.
The speaker also describes herself as the ‘neurominority’. 20 years ago, within sociology and the disability rights movement, there was a big divide between the medical and social models of disability, and the speaker was influenced by the social model of disability. The speaker also learned about how deaf people considered themselves as having a deaf culture similar to linguistic or ethnic minorities. Hence, she uses the term ‘neurominority’ to identify with the autistic culture, shifting the idea of disability to the idea of identity.
Reframing Autism With Polyvagal Theory - Holly Bridges
The polyvagal theory was designed by a neurobiologist called Dr Stephen Porges, looking at how the body influences the mind. The polyvagal theory highlights the role of the vagus nerve, which is the largest cranial nerve that conveys sensory information about the state of the body’s organs to the central nervous system. In other words, our senses are first registered in the gut, before the information goes to the brain via the vagas nerve in the spinal cord. Therefore, the vagus nerve choreographs the senses required for social engagement, such as our eyes, ears, face, voice, and feelings. The polyvagal theory suggests that autism is a learnt response by the body to pain and fear, a result of the child being in a prolonged state of 'fight, flight' while their nervous system is still developing.
All of our bodies have three states of safety or ways to look after ourselves. The picture of the sliding scale of safety options can be used as a reference system for autistic children to work out where they are.
The first safety state is the parasympathetic state. This is an open state in which our eyes, ears, face, voice, and heart are connected and functioning well, such that we can easily socially engage. all in a really good place. Our prefrontal cortex is also working well, including functions such as executive functioning, working memory, future planning, multi-tasking, and flexibility.
The second safety state is a sympathetic ‘fight or flight’ state. When there is a threat, our body implicitly tenses up and enters this restricted state, turning off unnecessary functions in order to keep us safe. We are still present but have to start working out what to do with this physiology to deal with threat. Our capacity to see, hear, move the body, and process information diminishes. Functions like breathing, digesting food, and connecting with feelings no longer work well, which explains why autistic people have sensory and digestion issues. This stage is also known as anxiety, which is primarily a physiological state, and only secondarily a mental and emotional state.
The third safety state is the sympathetic ‘immobilisation’ state, and the point of the polyvagal theory is that this third state is often forgotten. Our body involuntarily shuts down and our functions turn off, such that we have less access to our senses, brain functioning, and social engagement. In this limbic dominant state, we have no choice or control as the body is in charge and it is hard to redirect it.
This provides a physiological explanation for why the autistic brain sometimes does not work well, such as being unable to speak or having certain functions shut down when the autistic person is overwhelmed. Autistic behaviour is not wilful and autistic people should not be blamed. Instead, autistic people should practise self-compassion and kindness when they are stressed. Parents and teachers should also help autistic people feel safe in the classroom and home environment. This can help autistic people to override feelings of anxiety and teach their body to be more resilient with stabilised functions in a more parasympathetic state. In doing so, autistic people can go back to operating at a higher functioning level in which they are able to use their senses more efficiently at their will and communicate.
When this theory is described to autistic people, it resonates with them and explains what is happening for them. If an autistic person misbehaves, such as getting loud or falling asleep or not making eye contact, it is usually an indicator that they are not coping. Instead of describing such socially inappropriate behaviour as simply autistic behaviour, we can lend a helping hand. The autism reframe therapy programme focuses on assisting autistic people in perceiving a restful body state to regulate their ‘fight or flight’ response. We should give autistic people space and time for their nervous system to relax. Rather than promoting willful meditation, we can teach autistic people gentle exercises to increase their body awareness and physically calm themselves, such as pushing gently against a fit ball.
In addition, we should challenge the notion that autistic people have mental deficiencies that need to be fixed by professionals who provide a lot of direction and focus on outcomes. Instead, professionals should implicitly understand that autistic people are intelligent and sophisticated, but have had their social and executive functions turned off. The role of professionals is to teach autistic people how to feel more connected to their nervous system, as well as guide them into entering a more conducive state in which they can make decisions for themselves about what they want to do and how they want to express themselves. Professionals need to appreciate that autistic people know more about themselves than professionals do, as well as prioritise respect and trust in the partnership.
Website: http://www.zebr.co/
Interoception and Body Awareness - Dr. Emma Goodall
We know that autistic people lack sensitivity to exteroception or the perception of external stimuli, such as having oversensitive or undersensitive sight and hearing. Autistic people also lack sensitivity to another part of our sensory profile, interoception. Interoception refers to the perception of our internal physiological self, such as our heartbeat, breathing rate, hormones, muscles, and joints. Our brain interprets these bodily sensations into feelings, and also uses these to regulate our biology. For example, we eat because our body needs food, drink because our body needs water, and keep our core temperature within a certain range. Without interoception, it is hard to self-regulate our emotions and manage ourselves.
A lack of sensitivity to interoception explains why the autistic experience is so different to other people's experiences, why autistic people are often described as having no empathy when they simply do not express empathy in the same way, and why autistic people often do not recognise their own emotions until they are massive and have been noticed by everyone else. Empathy is grounded in a true understanding of what an emotion is. If an autistic person is not sure how an emotion feels in him, he may not have a good understanding of others’ emotions. One example is that an autistic child may not be sure if someone is crying because that person has laughed too much or is sad, and may respond wrongly by laughing instead of offering to help. Another example is that an autistic child might pick up an adult’s distress and think it is their own emotion, or think that he is the cause of the adult’s distress. When we teach children to develop an awareness of emotions, we should also teach them that some emotions belong to other people even if they pick up these emotions, that emotions do not last forever, as well as how to respond helpfully to others’ emotions.
A lack of sensitivity to interoception also explains why autistic people often do not recognise their hunger and thirst signals, resulting in overeating or undereating, as well as overdrinking or underdrinking. This stresses their brain and body, which makes their behaviour less pleasant and affects how they connect to other people. Not looking after themselves also has significant health implications, as dehydration can lead to headaches, kidney stones, and urinary tract infections. Autistic people also often do not recognise their internal body temperature well and dress inappropriately, getting so cold that their fingers turn blue or becoming so hot that they sweat profusely.
Parents and teachers can look out for some signs to identify that a chid lacks interoception sensitivity. One sign is that the child often dresses inappropriately and does not recognise when he is hot or cold. Another sign is that the child uses the same label for many different states of being, such as saying he is hungry or bored or angry across many different contexts and emotions. He recognises that his body is not calm but do not know what it is. Another sign is that the child cannot point to and identify where he feels a stretch in his muscles when asked to do interoception activities with his hands or feet. Alternatively, the child might do things like walking on tiptoes to have stronger bio-feedback in his calves. In addition, some people can be overly sensitive to pain, but cannot localise it.
There are ways that autistic people can use routines to compensate for their lack of sensitivity to interoception. One example is to have a regular schedule for eating three meals a day, as well as having a snack in the bag to avoid getting ‘hangry’ if lunchtime in the workplace is past the time that the body usually needs food. Another example is to use hydration charts and stool charts which prompt us to drink more water depending on how our urine and stool look. Another example is to the check the weather forecast in the morning and dress according to the outside temperature rather than weather it is sunny or rainy.
We can teach children to develop body awareness by guiding them to notice their body during activities in which the body changes state. When massaging babies, we should talk to them about what we are touching, so that they have the language to communicate and interpret interoception, which is a combination of perception and recognition. Furthermore, it is advisable to do interoceptive activities with children two to three times a day. This can be done in a naturalistic way, such as asking them to mindfully think about where they felt something in their body while getting dressed or while stretching their muscles. The speaker has a YouTube channel with short videos of interoception activities. The speaker and her team have also written free curriculums for the South Australian Department for Education, including the Ready to Learn Interoception Kit for preschools and primary schools, as well as the Interoception Activity Guide 301 for upper primary, intermediate and secondary schools. As children become more able to recognise and express internal signals, we should honour their agency and give them autonomy, such as giving them access to food and drinks if they say they are hungry or thirsty. Otherwise, it could be confusing if they receive conflicting messages from adults.
Interoception has two parts. The first part is interoceptive awareness, which is just noticing. The second part is interoceptive accuracy, which is the sensitivity to the correct interpretation of that noticing. Both aspects can be improved, but interoceptive awareness has to be improved first before interoceptive accuracy can be improved. Moreover, interoceptive awareness is atypical in many neurodiverse populations, not just autistic people but also people with neurodevelopmental disabilities as well as people who have been impacted by trauma. Helping these neurodiverse populations to connect to themselves can aid them in self-managing their emotions, caring for themselves, and expressing themselves in ways that are socially acceptable but meaningful.
The fear response survival instinct usually takes over when a person is stressed, distressed, anxious, frightened, and unable to cope. People who can read their body signals more accurately are less overreactive. For example, an autistic person who notices his heart beating might think he is very anxious. However, if he can check his heart rate on his smart watch and see that is only 70, he will realise he is not having an anxiety attack. Hence, he will still have a fear response when it is appropriate, but have fewer meltdowns when it is inappropriate. Having this sense of control can be empowering.
It might be useful to consider Dan Seigel’s hand model of the brain. The wrist represents the brain stem, while the palm represents the reptile brain or survival instinct. the folded over thumb represents the limbic brain or emotions, the folded over fingers represent the neocortex or thinking cap of the brain, and the middle two fingernails present the mindfulness part of the brain. One can only be mindful when the thinking cap is connected. When the person gets stressed and distressed, the thinking cap lifts off, so it is harder to function, and the emotions become in control. At this point, doing a mindful body awareness interoception activity can bring the thinking cap back down so that we are calm and in control, being happy and learning actively. However, when the person loses it, the reptile brain or survival instinct takes over to make us safe. This explains why autistic people can sometimes be mindfully engaged in a state of flow, but sometimes become very disconnected from themselves. We need to connect our mind to our body.
Website: https://healthypossibilities.net/
Books and products: https://mindfulbodyawareness.com/
Uniquely Human: There is no such thing as Autistic Behavior - Dr. Barry Prizant
In recent years, we have had major breakthroughs in our understanding of what autism is, not because of research but due to the ongoing autism revolution in which autistic people and their families talk about their experience. Autistic people have taught us that different autistic people have a different autistic experience. Families have also informed us that raising a child with autism is not a stressful tragedy; there are challenges but also a lot of learning and joy. It can be difficult from the outside to figure out what a person's personal experience is, especially if communication is either limited or done in a different way. The autism revolution has shattered many myths.
One myth is that autistic people are not interested in having friendships or loving relationships, and that they would prefer just to be totally on their own. We have learnt from autistic people that many autistic people sometimes simply find it exhausting to be in the middle of a complex social or sensory environment and need more refuelling time.
Another myth that has persisted is that there is no such thing as sensory issues and that it is an excuse for bad behaviour. The 2013 DSM diagnostic criteria finally included abnormal responses to sensory input. Sensory issues are very important in the experience of the autistic person in terms of the environments that are difficult to navigate.
Another myth is that if an autistic person does not speak, he is not intelligent. This confounds the inability to speak with intelligence, even though speaking is only one modality of communication. We are now discovering that there are many people with communication difficulties who are incredibly intelligent, but need augmentative communication technology to share their observations, thoughts, and knowledge.
Another myth is that intelligence is unidimensional. In the 80s, Howard Gardner developed the theory of multiple intelligences, but it was not applied to autistic people. However, Temple Grandin has talked about how autistic people may be strong in one type of intelligence such as visual spatial intelligence, and that they do much better when they are supported in following careers that are a good match for their autistic brain.
The speaker, who was trained in child development and behavioural psychology, wrote a book titled ‘Uniquely Human’ about a different way of seeing autism. The book became associated with Steve Silberman’s book ‘NeuroTribes’ as well as the neurodiversity movement after Judy Endow wrote a blog review. There is also a newly launched ‘Uniquely Human’ podcast series by the speaker and Dave Finch.
The main message of ‘Uniquely Human’ is that we should not punish autistic children to get rid of so-called bizzare and deviant behaviour, as they can be viewed as alternative strategies, just like how neurotypical children have different developmental paths and sensory sensitivities. For example, most children use an analytic approach in language development in which they go from one to two to three words, but some children use a rote memory strategy called Gestalt language in which they repeat they hear. Echolalia is actually a stage of language development, albeit drawn out over a longer period of time in autistic children. Another example is that introversion and extroversion exist on a continuum, and some children are more shy, anxious, and overwhelmed by social events. Autistic children are also reticent in their social approach and have social anxiety, albeit to more pronounced degrees. Another example is that all children have enthusiasm and knowledge in specific areas. Rather than calling these obsessive or excessive interests in autistic children, advocates like Stephen Shore and Temple Grandin propose that such deep interests should be nurtured, such as reading books on birds together instead of telling the child to stop talking about birds. Therefore, instead of pathologising differences, we should see all behaviour as a version of ‘normal’ behaviour, as well as understand and empathise with an autistic person’s experience and underlying causes of behaviour.
Nonetheless, we should not dismiss the challenges that go along with those differences. Instead, we should use a different lens to understand differences, which can lead to different solutions. Many professionals focus on training autistic children to reduce so-called undesirable behaviour and look as normal as possible. These professionals use terms like ‘behavioural problems’, ‘non-compliant behaviour’, or ‘escape motivated behaviour’, such as when a child lays on the floor screaming when the teachers expect him to sit too long in the classroom, or when a child shows self-injurious behaviour like biting his wrists for oral sensory seeking.
However, parents should trust their instincts about how to support their autistic child. The best way to develop a trusting relationship and help an autistic child change for the better is to change ourselves in terms of our attitudes, our behavior, and the types of support we provide. In other words, we should focus on changing the environment instead of changing the child. To do so, we should listen to the autistic child’s feelings and needs by observing him at every level, including his verbal and non-verbal reactions to situations. We should also keep digging deep to respect and understand the child’s behaviour, instead of demanding the child to stop a behaviour because we dislike it. To quote Ros Blackburn, ‘If I do something you don’t understand, you’ve got to keep asking, “Why, why, why?”’ We should understand the causes of the child’s emotional and physiological dysregulation, as well as consider how to change the environment to lessen the stress or help the child develop strategies to self-regulate.
Website: http://barryprizant.com/
Podcasts: https://uniquelyhuman.com/
SCERTS Model: http://scerts.com/
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