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 from all around the world 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 5 focused on supportive approaches.
Therapeutic Chickens: Animal Assisted Learning - Summer Farrelly
When the speaker was 9 years old, she was going through a challenging time in her life. She happened to see some chickens at a local market and recalled that she had loved the chickens her grandparents had previously owned, she asked her mother if she could keep some chickens. While watching the flock of chickens, she realised that the chickens had different personalities and groups, as well as followed a social hierarchy. She saw similarities between the interaction patterns of the chickens and kids on the playground in school, and she learned how to interact with people better through observing the chickens. She also felt loved, needed, and valued by the chickens which accepted her for who she was without judgement or discrimination. The chickens were not just farm animals, but could be considered pets, friends, or family. Hoping to share this with other people, she started the animal assisted learning programme ‘Chickens to Love’ at Community Lifestyle Support. More recently, she also created chicken-related artwork and put together a trainer manual book for her ‘Chickens to Love’ programme.
The ‘Chickens to Love’ programme can be modified depending on what the participant is comfortable with doing and wants to get out of it. Participants may want to develop their understanding of social cues, want a place where they can relax, want to interact with other people who also like chickens, or want to learn to love chickens. Just like with kids on the playground, it is a process of learning that chickens are not something to be afraid of, and that it is possible to build a bond with mutual trust. All the participants so far have given positive feedback.
Students typically have to be good in academics or sports to be recognised in schools. However, the speaker feels that as long as one loves something special, one should be recognised for being able to do it, even if it is outside the norm of what is usually recognised. For example, the speaker previously donated a community spirit award to her school, in which a student each term wins an award for doing something they wanted, such as art, photography, or community work. Having such recognition by teachers and principals at school can encourage other students to recognise these different abilities as well as help the recipients cultivate their self-esteem.
Working with chickens gave the speaker a topic she enjoys talking to others about, which increased her self-confidence and resilience. However, although some people were interested in listening to her point of view and finding out more about the things she had done, some other people felt she was being boastful. In addition, although people saw her achievements, it also meant that people often forgot that she still needed help in certain areas. Thankfully, her teachers created a comfortable environment that allowed her to communicate her needs, such as checking in on her from time to time, instead of expecting her to put up her hand and ask for help which might invite judgement from her classmates.
The speaker struggled with social skills in school, encountering bullying and feeling that she did not fit in. She was told to walk away and not respond to bullies, but the bullying continued. Thus, she decided to practise bullying scenarios and comeback responses with her mother. For example, if someone told her she was stupid, she would say, ‘Shh, it’s a cover. I need to let others shine too.’ If someone told her that nobody cared what she thought, she would pretend to get out her trusty invisible notebook with a list of people who cared about her, as well as say, ‘While you're speaking on behalf of the whole entire world right now, what are you doing about global warming and issues such as that?’ After giving such unexpected reactions, the bullies had no idea what to respond next and stopped being mean to her. Over time, she also realised it was fine to stand out and be who she was, increasing her self-acceptance.
The speaker’s advice for parents who are trying to connect with their autistic children is to find a common topic that they can both be interested in and talk about, rather than forcing upon the autistic children something that they do not really care for. For example, the speaker made the effort to watch videos and read up on Star Wars and Dr Who to communicate with her brother. Similarly, the speaker’s family members made the effort to understand how much she loved chickens, and worked together as a family to care for the chickens. The common topic can be anything at all; it is just a means to interact with others.
Website: https://summerfarrelly.com/
Facebook: https://www.facebook.com/Chickens2love/
Assisting Communication - Techniques and Technology - Dr Rosemary Crossley
Some people have severe difficulties with speech more than just a stutter or articulation problem; either they have little or no functional speech despite being able to hear, or they have lost speech due to an accident or illness. Without a means of communication, they cannot have their needs met, and this frustration can lead to behavioural problems. Moreover, they are usually not offered choices and are inappropriately treated like babies, because assumptions are made about their intelligence.
Young children may try to indicate what they want by communicating through gestures, such as by pulling adults by the hand. Adults should follow their lead and expand on it by adding more details. For example, if a child pulls the adult by the hand towards the refrigerator, the adult can open the refrigerator door and teach choice making in a fun and meaningful way. The adult can hold up two things, one of which is something the adult knows the child wants and one of which is something the adult knows the child does not want. The adult can ask, ‘Which one do you want?’ and wait for the child to reach for his preferred item.
Parents and teachers can also help children with little or no functional speech using augmentative and alternative communication, such as hand signs, low-tech communication boards, or high-tech devices. A lot of autistic children have a problem called dyspraxia, which affects their motor skills and speech generation, since speech involves fine motor skills. It is difficult for parents to know if their young autistic child has speech difficulties or is simply developing at a slower pace. For example, the child may be able to say some words that are appropriate and clear, but does not put longer sentences together. Regardless, research shows that introducing visual communication strategies to the child can help speech development. It is a misconception that augmentative and alternative communication technology makes children lazy and stops them from speaking. Children who can speak will do so, as speech is the easiest way of communicating.
As a starting point, it can be helpful to provide a yes/no strip. Adults should teach the child to use the yes/no strip in a direct and meaningful way. The adult can ask, ‘Would you like a chip (or the child's favourite food)?’ When the child looks at the adult and reaches for the chip, the adult should help the child hit yes, say, ‘Ah yes, you would like a chip,’ and give the child a chip. If the child hits no, the adult should say, ‘Oh no, you don’t want the chips?’ and put the chips away for a few seconds. This process should be repeated until the child learns the linguistic meaning of hitting yes and no. When the child is old enough, the adult can ask more complicated questions. The adult can ask, ‘Have you had enough chips?’ If the child accidentally hits yes, the adult should say, ‘Well, you've had enough,’ and put the chips away, even if the adult knows the child still wants more chips. Likewise, the adult can take away the child's favourite toy and ask, ‘Do you want the toy back?’
Adults can also prepare basic picture boards, as well as a blank laminated sheet with space to write on using a marker. Adults can take photographs of things that of particular interest to the child, then print and laminate them to create small picture cards that the child can relate to, such as collections of favourite foods and drinks. Depending on the age of the child, more or less pictures can be given. Phrases such as, ‘Hello,’ ‘I want’, ‘Please’, and ‘Thank you,’ should also be provided, so that the child has a way of learning the same kind of sentences that speaking children would be using at that developmental stage. In addition, other family members should model using the communication board in a fun way in front of the child, even if they can speak. ‘What would you like to drink?’ ‘I want. Milk.’ ‘Magic word?’ ‘Please.’ ‘Oh you said please, of course I'll get you the milk.’
There are also more complex high-tech communication devices. A large sized iPad is clearer to look at and easier to select buttons on since the surface area is bigger. There are many apps that can run on iPads, such as TouchChat with WordPower. Although these high-tech set-ups are more complex for the parents and child to learn to use, they allow the child to use real language. The aim is for the child to generate sentences using sequences and choices, such as pressing the buttons, ‘I want. To eat. Tiny Teddies.’ Parents can change the vocabulary to suit the child, add more choices, and add social phrases like, ‘I love you. Great. Please. Thank you.’
A lot of autistic people struggle with a perfectionist tendency or a reluctance to try things if they are not good at them. Therefore, at the start, it is recommended that parents use augmentative and alternative communication together with the child, so that the child does not experience failure. Parents should also avoid correcting errors in spelling, punctuation, and grammar till the child is older. It is also recommended that parents deliberately make some mistakes themselves and try again, such as saying, ‘Oh, I’m wrong! I don't want orange juice, I meant to hit coffee. Okay, I'll hit coffee, now I'll get coffee.’ This teaches the child that getting something wrong is common and not the end of the world; we can move on with the task.
The more visual exposure children have to written language, the more written language they will acquire. Even children who cannot read aloud can still learn to read. Hence, it is recommended to have the written word alongside each picture on communication boards and devices. It is also important for parents to read to young children as much as possible, making reading a fun, interactive, and social activity. There are reading apps such as Aesop Fables: Children Stories with children’s books that keep children’s attention, as there are topics that interest the children, animated pictures, as well as audio narration with the corresponding words highlighted. The adult accompanying the child in using these reading apps can also make comments like, ‘Oh, what a funny looking lion.’
A lot of autistic children who have speech difficulties are assessed as having significant cognitive impairments using traditional tests, but score in the average range or even better when given tests that do not require spoken answers. Furthermore, many autistic children without speech are able to complete higher education. Therefore, it is important to realise that there are no limits and we can all do things we might not expect to be able to do. We should not underestimate autistic children with speech difficulties. Instead, we should enable them to succeed by giving them the same age-appropriate learning opportunities that we give other children. We should also make the children’s learning process fun and interactive, involving as many family members as possible. There are many apps that are good for improving children’s hand skills, such as Flower Mania Drawing Pad and Tiny Piano. The accompanying adult can say, ‘Oh how beautiful, would you like to send that to daddy?’ and assist the child in emailing his creation to daddy, who immediately replies with an encouraging response.
The Importance of Connection - Zack Siddeek
Growing up with high-functioning autism, the speaker internalised negative messages due to societal stigma around autism and disability. He blamed himself for being a bad and broken person who could not do things as well as others for random unexplained reasons. He also did not feel safe and supported to be open about his autistic identity, and felt the need to mask in order to avoid being bullied. As he did not know autistic people he could relate to, he felt lonely and isolated. In addition, a lot of autistic people, especially women and people of colour, are diagnosed at a late age, and there is little official support for autistic adults who do not have intellectual disabilities. This can have a negative impact on autistic people’s mental health, such as an increase in drug abuse, addiction, suicidal ideation, depression, and anxiety.
The speaker started organising social meet-up groups for autistic adults called the Square Pegs. These groups provided a sense of community and connection, allowing participants to find a place they could finally belong to without the usual anxiety, pressure, and exhaustion of interactions with neurotypical people. Participants were able to find friends and make connections based on common interests. Even if they had no shared special interests, they could still connect with one another and talk about matters impacting them due to their shared autistic experiences, such as feeling like an outcast, undergoing invalidation trauma, and facing problems like job search difficulties. They also understood one another’s autistic traits like avoiding eye contact, thereby saving the energy of having to mask in a neurotypical way or explain the autism experience to neurotypical people. They reclaimed their identity as autistic people and reframed the narrative of their lives through a social rather than medical model of disability, realising that they were not at fault but were simply existing in a world that was not built for autistic people. They became more confident and less depressed. The speaker believes that these mutual aid groups can serve as the first foundational step for autistic adults to build a supportive community, seek mental health services, as well as create effective advocacy movements for long-term systemic change.
Neurotypical people often engage in well-intentioned but harmful actions based on the mistaken assumption that success for autistic people means behaving in a neurotypical way. For example, neurotypical professionals who hold social skills classes often assume that autistic children do not want to socialise and teach autistic children to follow neurotypical friendship norms. In fact, autistic people's brains do not get the surge of dopamine that neurotypicals would get when engaging in relationships in a neurotypical way. Autistic people have different needs in relationships and prefer to engage with friends in a different way. As such, there is a need for the autistic population to advocate for themselves, and participating in social meet up groups with other autistic people can be a way to practise speaking up. Having an autistic voice in conversations about autistic issues can help neurotypical people to receive feedback, address blindspots, process stigma around autism and disability, accept differences, as well as understand their own privilege. For example, instead of judging autistic children or blaming their parents, neurotypical people should accept that neurodivergent people do things in different ways, and that not looking ‘normal’ is not necessarily a bad thing.
For those who are looking to start their own social meet-up groups, it is important to provide a non-judgemental space where people can feel welcomed, understood, and safe. For instance, there can be a gaming group with consistent gaming rules. Organisers should consider their personal strengths, skills, and interests when creating the groups, as well as work as a team with other autistic and neurotypical allies instead of working alone. They should also publicise the groups, such as by sending flyers to organisations where autistic people receive services. Organising social meet-up groups is a learning process that should be enjoyed, and organisers should forgive themselves if they make any mistakes or do not achieve the success they hoped for. Organisers should modulate their expectations and accept that it might take time for people to show up to the groups. This is because there are many barriers for autistic people to get out of the house and meet others, including social anxiety and sensory overload. A possible solution is to conduct a virtual group initially, before moving on to in-person groups after building up a good core capacity of people which can allow the group to sustain itself. In addition, organisers should allow people to participate at whatever level they are comfortable with, as turning up for sessions may already be a huge step for some participants. Even if some participants do not speak, they probably still listen and benefit from the sessions.
Instead of forcing autistic children to behave in a neurotypical way, parents should love and support their children. This support might look different from the way they themselves were supported as children, or different from what other people consider the best type of support to be. Parents should be open to realising that they have made mistakes, and accept the fact that there is a part of their autistic children’s experiences that they do not know about. Parents can find out more about the experiences their autistic children are having by reading autistic adults’ blogs or meeting autistic adults at social meet-up groups.
Website: https://www.meetup.com/Squarepegs/
Building Shame Resilience in Children - Paul Micallef and Shannan Lea
According to Brené Brown, there are key differences between the emotions of shame, embarrassment, and guilt. Shame is defined as the intensely painful feeling of believing that we are fundamentally flawed, and therefore unworthy of love, belonging, and connection.
Embarrassment is a feeling of discomfort when one feels that his projected image has been compromised. Embarrassment is fleeting and we know that we are not the only ones who have done something embarrassing, so it can even be funny shortly after the moment has passed. On the other hand, shame can have long-term implications and makes us feel alone.
Guilt is a feeling of discomfort about one’s mistakes or actions that do not match up with our values. Guilt is focused on a specific behaviour (‘I did something bad’) and can be adaptive or helpful as it motivates us in a positive direction, either apologising or doing things differently in the future. On the other hand, shame is focused on the self (‘I am bad’) and tends to have negative outcomes.
Humans experience shame as a web of layered, conflicting and competing social-community expectations of who, what, and how we should be. These expectations and shame messages come from areas such as the family, community, and media. This makes us feel trapped, powerless, and isolated, which are intense emotions that we naturally want to get rid of as quickly as possible.
There are 3 ways in which we often behave when dealing with shame. These strategies we use to disconnect from the pain of shame are called Shame Shields.
Moving Against is about coming out swinging and fighting shame with shame. This involves anger, blame, and defiance.
Moving Toward is about people pleasing and kissing up. This involves following rules, seeking perfectionism, masking, and trying to be good all the time to avoid getting into trouble.
Moving Away is about secret keeping, hiding, and isolating. This involves disengaging and withdrawing in order to avoid risks and protect ourselves. This response is especially common among autistic people, where it seems easier to not put themselves out there in an unsafe world, because then they cannot be rejected. However, this can be a toxic process.
Autistic people are often told the negative message that they are not good enough, are broken, and need fixing, even when they try their best. For example, autistic children are shamed about the autistic trait of avoiding eye contact as it is assumed that they are not paying attention. In fact, trying to split their attention between auditory and visual stimuli is a more complex process, and they are more likely to remain focused when they do not make eye contact. Instead of forcing autistic children to fit in, we should accept their differences and include them, sending a positive message to counteract the shame messages that they absorb through most of our lives.
Parents should develop awareness and sensitivity to the fact that they as parents may accidentally transfer shame to their children in a situation. For example, when shopping in public, the child may become frustrated and start screaming, causing other shoppers to stare and judge their parenting abilities. This may make parents feel ashamed, and they may make disapproving comments telling the child to stop doing that if he wants to have a reward at the end of shopping. Even the way that parents talk to children can be a punishment if it involves harsh words or tone of voice. In reality, the child might have been trying to communicate that he was hungry, tired, or having a sensory overload. Instead of having his experience of the world acknowledged, the child receives the message that there is something wrong with him. In addition to the confusion of not having his needs met and receiving negative attention from other shoppers, the child may feel isolated, rejected, and disconnected from his parents whom he initially believed would love him unconditionally. As human beings, our greatest fear is linked to our desire for love, connection, inclusion, and belonging, and feeling like we are worthy of these. Therefore, the threat that these might be taken away can be debilitating and feel like punishment. For example, an autistic child may feel punished and undeserving if he fears that his mother is going to be angry at him or that his peers will make fun of him.
Punishment is often ineffective for autistic children, because it is a stressful and negative experience that does not teach the child anything. If the child is not sure what he has done wrong or is not able to do any better, then there is no actual positive action that he can take to do something different next time. Instead of punishment, we should aim for correction. Punishment directly targets the person and is more shame-based. Although shame can temporarily change the child’s behaviour by making the child feel bad, shame can also crush their self-esteem. On the other hand, correction focuses on the behaviour and is a teaching tool related to social behavioural mapping. Correction guides a child to change his behaviour and tells him how he can do something differently the next time to make the experience more positive. Correction conveys the important message that the parent still loves, believes in, and cares about the child; that the child is still worthy, a good person, and a member of the family; that they are working together towards a goal.
Correction is similar to instilling a growth mindset in children. If children feel ashamed, or believe that their self-worth depends on the outcome of the situation, then they will be less likely to try in situations where they might fail. This withdrawal and disengaging response is the Shame Shield of Moving Away. In contrast, if children feel safe, loved, included, and good enough, or have the growth mindset belief that their self-worth does not depend on the outcome of the situation, then they will feel permitted to have the courage to try, making the effort to put themselves out there and be vulnerable. Failure is the first attempt at learning; it is not possible to learn without making mistakes.
Brené Brown believes that recognising shame, doing a reality check, sharing our stories, and speaking about shame are 4 important steps in building shame resilience. Empathy involves connecting to the emotions other people experience, so we know that these emotions are universal and we are not alone in our struggles. For instance, when we share that we feel afraid or anxious in certain scenarios, it is empowering to hear others say, ‘Me too.’ Unfortunately, due to executive function challenges with organising thoughts, autistic people have difficulty communicating and expressing their emotions. Since they find it challenging to talk about and share their feelings with others, it is hard for them to be understood or to develop a connection. In addition, shame encourages autistic people to mask and limit the expression of their individuality, as they fear being outstanding in a negative or positive way, or that their true selves would be deemed unworthy of love. This is especially since autistic people tend to have a perfectionist and concrete way of thinking, believing that they must be considered bad if they are not good. Hence, autistic children experience a higher level of shame, and shame may result in behaviours that drive them to feel even more trapped, powerless, and isolated.
There are different shame categories, such as family, motherhood/fatherhood, and parenting. We are also afraid of unwanted identities. For example, parents may be concerned about being viewed as inflexible authoritarian parents if they are too strict with their children, or viewed as parents who do not care enough if they provide their children with more freedom and less structure. It is important for parents to acknowledge and deal with their own shame triggers and responses. Firstly, recognising shame in themselves makes it easier for parents to recognise shame in their children. Secondly, this prevents parents from accidentally passing on their shame to their children (like in the supermarket example), as it is a natural human response to defensively push the blame onto others when we feel attacked and vulnerable.
Shame can occur even with things that are not necessarily bad or wrong, but are simply different choices. Although we have a constant urge to want to be good or right, we can never be perfect. Hence, it is important for us to build shame resilience in children early, so that they can get back up again when shame inevitably knocks them down. This includes having an underlying network and support blanket of unconditional love so that autistic children know that they are worthy. This also includes self-compassion in which autistic children treat themselves with kindness and recognise that they are different but not less. Shame is a universal experience despite our differences, and the more we can connect and empathise with one another, the less isolated and more empowered we can feel to actually go out and take on the world.
Emotional Intelligence Course: https://emotionsexplained.com.au/index.html
Brene Brown Free Downloadable Shame Resource: https://brenebrown.com/wp-content/uploads/2019/07/Shame-Shields-Secondary-8-1-19.pdf
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