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 2 focused on autistic women and gender differences.
Late Diagnosis: What I wish I knew - Samantha Stein (aka Yo Samdy Sam)
Autism can be diagnosed in late adulthood, as was the case with the speaker. In her teenage years, she internalised labels like ‘quirkiness’, ‘shyness’, and ‘laziness’ as part of her personality. She also focused on the things she could not do that other people seemed to find easy. She often felt there was something wrong with her, and such negativity was harmful for her self-esteem. Yet, her challenges went unnoticed by teachers since she appeared intelligent and had good academic results. However, as an adult, she saw a video that resonated with her. Instead of outdated stereotypes and pathological descriptions of autistic traits in the medical literature, the video focused on how autistic traits can present in real autistic people. For example, she realised that autistic people can appear extroverted on the outside, but feel socially awkward on the inside. She also realised that not all stimming involves aggressive repetitive movements such as banging one’s head against the wall, as certain behaviour she did like twiddling one’s hair and picking one’s nails could also be counted as stimming.
After the speaker received an official autism diagnosis as an adult and developed an understanding of the autistic brain, she felt validated and free. Her diagnosis helped her explain that she felt different because she was different, and helped her find strategies to get her life together. For instance, her ‘laziness’ could be attributed to executive function challenges, which could be supported with visual aids. Her diagnosis also allowed her to reach out to an autistic community who shared similar experiences, challenges, and strengths, and who could understand her. Her diagnosis also encouraged her to acknowledge her ‘spiky skills profile’ in which she was extremely good or bad at specific skills, such as recognising her particular strengths in hyperlexia reading ability and visuo-spatial rotational ability.
It is not easy to notice autism in someone who lives independently or is ‘high functioning’ or ‘high masking’, as they seem like they are coping well. Masking is a survival strategy that protects autistic people in a society that is governed by neurotypical standards, but it requires a lot of energy and can be exhausting. When autistic people stop masking, it can be a relief, but it can also be scary for them to show their true self to others.
It can be discouraging to tell autistic people that they do not look autistic, dismiss their sharing of their internal experiences, or give generic advice that works for the neurotypical majority but is less effective for autistic people. Such acts ignore the signs the autistic person has been giving and also suggests that the autistic person has to act more autistic to be taken seriously. In addition, it is not helpful to tell autistic people that all humans struggle through the same problems, because autistic people may experience them to a greater degree or severity. For example, although puberty can be a difficult time for all teenagers, autistic teenage girls are more greatly affected by hormones, which makes them more vulnerable to Premenstrual Dysphoric Disorder as well as mental illnesses like depression, anxiety, and burnout. Instead, it is advisable for loved ones to listen to what autistic people have to say, reflect their words back to them, and offer help. Loved ones should also be aware of autistic people’s triggers and facilitate them in working out whether the problem is what the problem seems to be. Multiple triggers could have been building up before the last straw that led to the meltdown, which is why autistic girls may seem fine in school all day but meltdown upon reaching home.
Website: https://yosamdysam.com/
YouTube: https://www.youtube.com/c/yosamdysam
Empowering Your Aspergirl - Artemisia Xene (aka Rudy Simone)
The speaker created a table of female autism traits, which has resonated with many autistic women around the world. It is not an official diagnostic chart, but it helps people become introduced to the possibility that they might be autistic women.
The change between a young autistic boy and a pubescent teenage boy is more gradual, whereas the change between a young autistic girl and a pubescent teenage girl is more abrupt. Teenage girls not on the spectrum usually develop a sudden interest in topics such as dating and jobs, while teenage girls on the spectrum retain their fantasy worlds and childhood interests, which leads to loneliness and confusion. Nonetheless, autistic girls tend to try to fit in, and might make things up in an attempt to conform, which can turn into a process of being untruthful or immoral as they get older.
Despite common misconception, autistic people can have vivid imaginary worlds with interior dialogue. They may prefer to be quiet and stay in their own thoughts as a safe place, since they find the sensory information and conversations from the external world hard to understand. They may therefore appear reclusive. However, there are ways to help make the external world safer for autistic people. Give them comforting things instead of forcing things that can induce painful sensations, such as certain colours, fabric, or food that they dislike. Provide a safe space with sensory elements for peace and relaxation, such as a pop-up tent with toys, games, films, music, lights, and fountains.
Autistic women tend to be critical individual thinkers, non-conformists, have a deep and focused interest in practical or creative topics, and know what they want to do as a vocation. Tell autistic girls that everyone is on this earth for a reason and that reason is not to be like everyone else; everyone has their own unique abilities and purpose. Take an interest in what autistic girls are interested in and value their thoughts, instead of criticising their thoughts even if the thinking is rude or esoteric. This can empower autistic girls to have self-confidence and follow their special interests. An example is Dr. Temple Grandin who studied the behaviour of cows and developed more humane livestock handling facilities. Another example is that an autistic girl may be a bookworm. This interest in reading can be typical for their age and gender, making her autism go unnoticed. However, instead of reading 100 different books, she probably reads the same book 100 times. She is hyperfocused with a deep level of enrapture and appreciation. This may be an attempt to take in data, trying to catch up to neurotypical people who seem to have an innate understanding of how to be a human on this planet. This may also allow her to develop a thorough understanding of what has already been created, which can facilitate her in creating something new as a writer in the future.
A big challenge for parents is dealing with the reality that autistic children may not meet their expectations. There is nothing wrong with being assertive as a parent and guiding the child to pursue a good degree or job. However, if it is creating a lot of unhappiness for the child, parents should stop and question if this is really the right path for them. Avoid gender bias and sexism, encourage individuality, and be supportive. Give autistic children more of a say in being the person that they are becoming.
Youtube: https://www.youtube.com/artemis_x
Busting Gender Myths About Autism - Lucas Harrington, PsyD
When people think about autism, there is a stereotypical gendered view of a boy who likes to keep to himself and is obsessed with mechanical things. However, a lot of girls with autism can look different from this stereotype, and some researchers refer to this as the ‘female autism phenotype’ (though some boys can also show these patterns, depending on how they are socialised). Girls with autism engage in typical socialising like following what other girls are doing, and usually have common girl interests like horses or dolls. Girls, especially girls of colour, are under a lot of pressure to learn what is expected of them as ladies and to be people pleasers. Thus, society do not think of these girls as unusual, and they can camouflage or mask their autism.
Myths about how autism looks can make it difficult for girls to get a formal autism diagnosis. For example, when the speaker was being evaluated for autism, the diagnostician assessed that she showed emotions, had a sense of humour, had empathy for other people, and had good perspective taking. Diagnosticians need to show some humility in their ability to recognise whether or not someone is on the spectrum just from a small snapshot, as autistic women may have a well-developed mask. Underdiagnosis and misdiagnosis of autistic women can make them feel frustrated, demoralised, and traumatised. Popular misdiagnoses include bipolar, depression, social anxiety, eating disorder, and ADHD. Females who feel like their diagnoses do not fit should look for re-evaluation from diagnosticians who are good at evaluating autism in females. Apart from seeking professional solutions, it may also be helpful to reach out to local autistic communities that support people who are self-diagnosed.
Although autism has stereotypically been thought of as a male condition, the issue of autism and gender is complex, and research is inconclusive. We do not know whether there is a genetic reason that causes autism to actually be more common in males than females, or whether females are just as likely to be autistic but are being underdiagnosed. We also do not know whether there is a genetic reason that makes autistic people more likely than neurotypical people to have a gender diverse identity such as being transgender or non-binary, or whether autistic people are more willing to adopt complex identities since they feel inauthentic due to the constant masking or feel they cannot fit into mainstream society in general.
Parents have to work on themselves first before they can help their autistic children. Parents should navigate their own reactions towards gender and uncertainty, such as by seeking therapy, joining support groups, or looking up works by Brené Brown. Parents should support autistic children in their gender exploration process, using concrete language and examples instead of referring to the abstract unknown. ‘Gender queer’ is a nice umbrella term that allows uncertainty. The term ‘gendervague’ has also been coined by people who feel like their gender is difficult for them to process specifically because of their neuro-divergence. Parents should also support the specific needs of autistic children with non-traditional genders or autistic children who are transitioning to different genders, such as addressing executive function challenges resulting from changes in dressing and hygiene practices.
Identity and Mental Health - Christa Holmans (aka Neurodivergent Rebel)
Autistic people can find it miserable working hard to blend in when they are born to stand out. In contrast, embracing their unique identities allows them to feel confident enough to be their true selves in any setting, provides clarity in what they are doing and where they are going in life, as well as attracts people who are like-minded or who accept them for who they are. To quote Brené Brown, ‘The opposite of belonging, from the research, is fitting in. Fitting in is assessing and acclimating. Belonging is belonging to yourself first. Speaking your truth, telling your story, and never betraying yourself for other people. True belonging doesn’t require you to change who you are. It requires you to be who you are.’
There is a lot of pressure on autistic people to conform and do what they are expected to do, instead of being authentic. For example, the speaker experienced workplace burnout trying to fit in. Things that were easy for other colleagues, such as doing a lot of overtime work, stretched her too thin. Moreover, she was not working with her natural aptitude, skill set, and work style as an autistic individual, because she was trying too hard to work in the neurotypical way.
Coming out of the closet as autistic (or other identities such as gender identities) can be very healing in terms of mental health, letting them realise they are normal and that there is nothing wrong with them. It also gives them information and explanation about themselves, which can help them stay mentally healthy in a world that is not always very understanding or accepting.
It is important for autistic people to set their boundaries and not let others violate their boundaries. Firstly, autistic people need to learn their own limits and learn to advocate for their own needs to perform at optimum efficiency. They need to be open and honest even if these requests may be misunderstood by others as being unfair or unreasonable. Examples include negotiating for different work hours, requesting to sit in a quiet corner with natural lighting in the workplace, or declining invitations to socialising events when they are not feeling up to it. Secondly, autistic people need to learn to keep the right people in their life, protecting themselves from ‘frenemies’ who might be disrespectful or who might be harmful to their mental health. This can mean that autistic people may have a smaller social circle, and value quality over quantity in relationships.
Society often dismisses autistic people’s mental health struggles as normal behaviour for autistic people, which denies them from getting care. For instance, only after the speaker discovered that she was an autistic individual with anxiety was she empowered and able to adopt mindfulness techniques such as breathing exercises, meditation, and yoga to help herself. Furthermore, medical models of autism tend to list out autistic traits in a pathological way, such that even things that could potentially be skills are described in a bad way. For example, after embracing her identity as an autistic individual, the speaker came to realise that although being fixated and having repetitive interests can be a hindrance sometimes, it also allows her to be exceptionally focused in the workplace. Embracing our identity allows us to believe in ourselves and all the things we are capable of doing, which can greatly improve our self-esteem.
Website: www.NeurodivergentRebel.com
Mid-Life and Up: Planning for the Future - Barb Cook, M.Aut., Dip. HSc.
The speaker was diagnosed with autism late as an adult in her 30s, when she was at a crisis point and was losing jobs quickly. Having an autism diagnosis was validating as it explained why she had struggled to fit into society for years, enabled her to better understand herself and her neurology, and helped her determine what supports would work for her. Although she wished she could have been diagnosed earlier, she focused on self-determination and redefining her life in the years ahead. It is important to develop self-awareness of one’s own strengths and weaknesses as well as their causes, such as determining whether anxiety in the workplace is due to a problem with communication or executive function. It is also important to develop self-advocacy skills to ask for necessary supports, instead of putting up with discomfort in everyday life or giving in to others to appease people. Parents and educators should model and teach these skills to younger children with autism, as well as explain possible outcomes for different choices.
The speaker learned about autism not only by reading scientific research literature, but also by talking to other autistic people about their lived experiences. For example, while writing the book ‘Spectrum Women’, the speaker found out from other late diagnosed autistic women that symptoms associated with ageing can be amplified among women with autism, such as having extremely itchy skin and mood swings when approaching menopause. The speaker also found solutions to life challenges by getting insights from other people on the spectrum with similar neurology and experiences, joining Facebook support groups such as AsperDames and Spectrum Women Connect. For instance, support group members exchanged information about how certain medication did or did not work for them.
As autistic people get older, they may start to have more health conditions and need to go to the hospital more often, so they need to be prepared.
Tips for autistic people regarding medical visits: (May be challenging as staff might be pressed for time or unwilling to listen)
Plan questions to ask the doctors and nurses, such as the names and details of medications and medical procedures.
Provide doctors and nurses with a concise list of information to communicate your autistic needs and preferred supports, such as sensory needs and hypersensitivity to medications. Allow others to ask questions if they are not sure about the autistic perspective.
Be accompanied by someone who understands autism well, is supportive, and can be trusted. This good support network can be in the form of a family member (though parents may pass away in later years), friend (including friends on the spectrum who share the same neurology and concerns), support worker, or health professional (who is genuinely interested in the patient’s wellbeing and willing to take the patient’s needs seriously).
Be mentally prepared to be in a stressful clinical environment, which can have certain noises or smells.
Find out from the admin staff the estimated waiting time, so you can stay somewhere quieter until the appointment is due.
Autistic people need to do longer-term planning for a good quality of life in old age, including when being in aged care. Children and elderly with autism often have other people make choices for them, but this suggests that they are not capable of making choices, which can be disempowering and dehumanising. Instead, autistic people should be allowed to make their own choices. If they make their own choices and these choices turn out not to be good choices, they have nonetheless learnt from their choices and can make better choices in the future, and can have a sense of ownership over their own lives.
Personal Website: barbcook.com.au
Organisation Website: spectrumwomen.com
'The Chameleons: Women with Autism' Documentary: https://www.youtube.com/watch?v=VJHa9xk16Hw
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