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 3 focused on education and employment.
Social Inclusion: It's all about MATES - Randa Habelrih
Despite seeking friendship and belonging, most autistic people struggle with socialisation and communication, which can lead to social isolation. Hence, is it important to create more opportunities for autistic people to gain social acceptance and inclusion, and lead more rewarding lives. The traditional approach is to have a therapist teach autistic children social skills in a clinical setting, such as via role playing. On the other hand, the speaker adopts a different approach in her social enterprise Autism Mates.
Firstly, the speaker believes in providing opportunities for autistic people to showcase their abilities. One example is the Autism Mates Speaking Conference, where autistic speakers present onstage to advocate for themselves, talk about their strengths, and share what they would like to achieve. Non-verbal autistic people have also presented at these conferences, such as by typing out their speeches. Moreover, the messages are not edited in any way. This allows the audience to listen to autistic voices, unlike most conferences which focus on clinicians and therapists as the so-called experts on autism. This also adopts a strengths-based model, unlike interactions autistic people usually go through in which they are assessed and told to work on their deficits. There are also plans for the next conference to be held in parliament in front of key decision makers of public policies. Another example is the Model Mates event where autistic people are professionally styled and go on a catwalk in an elite shopping centre. Dressing well and presenting the latest fashion to a cheering crowd increases their self-confidence. Although autistic people may look aloof or withdrawn, we should not assume they are incompetent or disinterested. Many of them hope to be celebrated and involved, and having such experiences can be empowering and transformational.
Secondly, the speaker believes in educating peers about autism to foster friendships in the playground. For example, the School Mates programme is a formal leadership and buddy programme in which students apply to be Mates Leaders. These role models are educated on autism and paired up with other students from the same year group who may need additional social support. This programme helps to break the ice and invite children with autism into friendship groups, such as during meals and games at lunch time, or doing project work in class.
Although it is easy to underestimate autistic children, parents and teachers should look for their strengths, encourage them, and nurture them. Even if autistic children receive a dire prognosis, parents and teachers should not lose hope or allow the prognosis to become a self-fulfilling prophecy. For example, the speaker was told that her autistic son would never speak, but he graduated from a mainstream high school and became a public speaker. Now, he performs The Best Mates Puppet Show and gives talks sharing his personal stories on difference, inclusion, and acceptance.
Website: www.AutismMATES.org.au
Informing Educational Practice with Autistic Experience - Jacquelyn Fede, PhD & Amy Laurent, PhD, OTR/L
Dr Jacquelyn Fede initially felt incompetent as she was good at her job tasks but often melted down after a day in the office, destroying things in her house or sleeping for long periods of time. After casually disclosing her problems with Dr Amy Laurent, she came to an understanding that she was autistic, which allowed her to know her sensory needs and strategies to function well in the workplace. Previously, she was fortunate that her school allowed a lot of freedom and independence, which enabled her to self-regulate and meet her sensory needs even though she was undiagnosed. One example was that she disliked being in the cafeteria due to her hyper-sensitivity to sounds, smells, and tastes. Teachers allowed her to walk around the school during recess instead of forcing her to stay in the cafeteria. Another example was that she negotiated with teachers to change assignment requirements, in order to make them challenging or interesting while still meeting the rubrics. Teachers acknowledged her creativity and initiative instead of punishing her for defiance. Likewise, her mother was a professor of exercise science who encouraged her interest in physical activities and competitive sports, defending her when people criticised her high level of movement and energy. She was surrounded by supportive people who celebrated her differences as well as viewed her personality in a positive light. Her actions would probably have been interpreted more negatively if she had been labelled as autistic.
Dr Amy Laurent and Dr Jacquelyn Fede work together in a partnership called Autism Level Up, with the former sharing information regarding diagnosis and intervention, and the latter providing the autistic perspective. Together, they develop tools facilitating autistic children in speaking up for themselves and getting their needs met.
One tool they have developed is called the Person In Context, which allows autistic individuals or their partners to observe and break down an individual’s profile according to his physiological, interoceptive, sensory, motor, cognitive, communication, and social factors (such as varying levels of social motivation). This framework enables users to think critically about an autistic individual’s actual experience of the world as well as the goodness of fit between the person, environment, and activity. This document provides a framework which can help with self-advocacy in the school and workplace. The autistic student can candidly discuss with the teacher about what supports he needs to actively engage in the classroom activity, compared to conventional approaches which focus on rewarding him after he makes it through a classroom activity.
Dr Jacquelyn Fede used the Person In Context tool to make her workplace more accessible. In her schooling days, she followed a strict schedule with a lot of intense physical activity, and social interactions were centred around these preferred activities. However, office work involved a lot of masking to meet societal expectations, such as sitting at her desk from 9am to 5pm to fulfil work hours despite completing the work much earlier, as well as enduring sensory overload. Based on her Person In Context profile, she adopted a new work schedule including work from home, and pedalled on a bike desk instead of sitting on a static office chair. She also disclosed her autism diagnosis to her co-workers, who supported her by creating meeting agendas and exempting her from small talk at the end of meetings.
Other tools they have developed are called My Energy and the Energy Meter, which help autistic individuals identify and express their arousal states without emotion labels, using concrete terms such as ‘maxed out / frenzied’, ‘amped up / fidgety’, ‘focused / purposeful’, ‘settled / calm’, ‘sleepy / still’, and ‘asleep’. This can be helpful for autistic individuals who struggle with emotional identification and expression, but are working to understand the concepts of regulation and how to adjust their energy level to successfully engage in activities. Moreover, this can address the fluid meaning of emotion words, since one can feel happy but be at different arousal states. The energy level terms can also be customised to age-appropriate lingo or areas of special interest to resonate more with the autistic individuals, such as using animal-related descriptions in preschool like, ‘I’m buzzing like a bee,’ or ‘I’m sleeping like a hibernating bear.’
Teachers and parents need to teach students how they learn and what supports they need in place in order to engage in learning. Rather than focusing on the curriculum content, knowing who they are as a learner is an important life skill so they can continue learning on their own outside of school. Teachers and peers also need to increase their understanding of autism to facilitate conversations and mutual understanding, otherwise the burden falls on autistic people to constantly educate others and advocate for themselves. Everyone should also prioritise constantly listening to the autistic voice and learning their experience, in order to address blind spots and implicit biases that they might not even know exist. The only way society can truly help autistic people navigate their environment is if we truly learn to understand who they are.
Website: autismlevelup.com
Amy’s Website: www.amy-laurent.com
Finding a Job as an Autistic Person - Chris Bonnello (aka Autistic Not Weird)
The speaker had a demotivating experience looking for jobs as an autistic person. Job interviews are not designed for the benefit of people who could be really good at the job but are not really good at talking about being good at the job. Nonetheless, he persisted in his job search, because he knew that he could perform well in the job if given the chance. Eventually, he got his first job as a primary school teacher on the 13th interview. Autistic people may have low self-esteem, as they are usually raised to define themselves by their weaknesses, and society also tends to place a person's worth on their employment status. It is important for autistic people to learn to recognise their strengths and skill sets, as well as believe in themselves.
Receiving a late diagnosis in autism increased the speaker’s self-understanding, and making peace with himself indirectly helped him in his job search. He realised that just because he was not like everyone else did not mean that he was a wrong kind of person, and just because an interview panel turned him down did not mean he was a bad candidate. He did not need to pretend to be the correct type of person by societal standards. If he tried to blend in and be like everyone else, he would seem like a generic candidate and would probably not get the job. Instead, he found that it was worth taking the risk to display what made him stand out.
Job interviews are not just about whether a candidate is suitable for a company, but are also about whether a company is suitable for the candidate and about what the job can offer the candidate. If an autistic person pretends to be neurotypical during a job interview, there is a danger that the autistic person lands a job in a company that has a discriminatory attitude against autistic people. It would be exhausting for the autistic person to constantly pretend to be neurotypical, and any accidental display of autistic traits might jeopardise the job. Whether to disclose an autism diagnosis to an employer is ultimately a personal choice. Nonetheless, if an autistic person decides to mention his autism diagnosis in a job interview, then it should be done in a strategic way that makes him more likely to get the job, not less likely to get the job. For instance, instead of describing his autism diagnosis in terms of weaknesses, the speaker explained to the interview panel how his autism-related strengths would enable him to perform well in the job scope. He also explained that his job interview answers might not be an accurate reflection of his job performance as answering job interview questions fluently was not in his skill set. The interview panel admired his honesty and gave him the job.
There is a risk of stigma in terms of what society associates with autism. Unfortunately, some companies may have people in positions of power who have discriminatory attitudes that cannot be changed immediately. However, there is an ongoing diversity movement on a worldwide scale, in which autistic people are advocating and educating people on the challenges and strengths that autistic people have. Autistic people can also try to get jobs in companies that respect autistic people’s strengths, which can help to show the rest of the world what autistic people can do and challenge people’s discriminatory attitudes.
Moreover, apart from attending job interviews, autistic people can seek employment in alternative ways, such as getting jobs via family and friends, or becoming self-employed. Although self-employment means that one lacks employment benefits like sick pay, the main advantage is that it allows one to do things on his own terms as long as the work gets done, such as having flexible work hours and following one’s preferred work style. There are several considerations when looking at self-employment. Firstly, it is important to know what one actually wants from a job beyond money. For example, the speaker knew that his mathematics degree could allow him to do higher paying jobs, but he wanted to be in the teaching industry because of the rewarding nature of seeing young people learn and grow. Secondly, one must have something he is enthusiastic and knowledgeable about, ideally transforming one’s special interest into a business. However, apart from being good in this area of interest, one also needs to learn additional skills in other aspects of running a business, such as marketing and customer service.
The job market may change unrecognisably between now and when today’s autistic children reach adulthood. Hopefully, with the ongoing diversity movement by the neurodiverse community, recruitment practices and societal attitudes in general will become more disability-friendly. In the meantime, parents should encourage autistic children to define their identities by their strengths rather than weaknesses, as well as be their genuine authentic autistic selves. At the same time, parents should help autistic children have a healthy understanding of their areas for development, as well as teach them how to apply their strengths and interests in a professional context.
Website: autisticnotweird.com
Books (fiction series 'Underdogs' featuring neurodiverse characters): https://chrisbonnello.com
Advocating for Yourself at Work - Michael John Carley
Many autistic people grow up being scolded and having to apologise for their behavioural differences. It is important for autistic people to learn to believe in their own strengths and how to advocate for themselves.
Disclosing one’s autism diagnosis can be challenging. This is because autistic people do not read social cues well, and might make poor decisions about who to disclose their autism diagnosis to. Furthermore, self-advocacy is a diplomatic skill that involves respecting authority. Nonetheless, it may be easier to disclose an autism diagnosis at work if there are protection laws. Unlike large corporations which have to comply with inclusion laws and be held accountable for how they treat employees, small companies do not have to answer to anybody and have more freedom to do what they want. This can be a bad thing if employers have discriminatory attitudes, but can also be a good thing if employers are understanding and accommodating. When a person with autism discloses his autism diagnosis and advocates for his needs in a small company, he needs to focus on one-on-one relationships with the employer. He has to ensure that the employer realises his value and is motivated to keep him even when there might be challenges.
It is advisable to disclose one’s autism diagnosis in writing rather than in the person. If disclosure is done in person, the manager may not know anything about autism and may ask for explanations which the employee might not be prepared to do on the spot, or may give negative reactions that put the employee in a vulnerable position. If disclosure is done in writing, the manager has time to process the information and work out his own reaction. In addition, when disclosing to a manager via email, the autistic employee should CC the manager’s supervisor. This increases accountability, so that the manager cannot ignore the email and has to address the situation seriously.
Managers might reject the idea of providing accommodations, on the basis that co-workers might complain about unfairness if anyone receives special treatment. Managers might also feel intimidated, assuming that the autistic employee will request for costly accommodations involving major changes in the office. Ideally, the autistic employee should provide useful information about autism and his specific needs when asking for accommodations, since different people with autism have different needs. Good managers should also take the initiative to ask the autistic employee, ‘How would you like me to handle this?’ before approaching the Human Resources team to see if these requests are possible. The desired accommodation could turn out to be as simple as the autistic employee wanting to be able to wear sunglasses at work due to sensory sensitivities. Sadly, employers tend to treat autistic people as problems to be solved and focus on the accommodations they have to give to autistic people. Employers tend to overlook the much greater degree to which autistic people have to accommodate themselves to the neurotypical environment. It is easy for society to underestimate the amount of hard work that autistic people have to invest in order to achieve what they have been able to achieve.
There is a culture shift in which companies are encouraging disclosures in order to increase their diversity and inclusion numbers. However, such attempts at diversity inclusion in companies are usually focused on race and gender. All disabilities, including autism, tend to be neglected, because they are more complicated and have less shared experience. Furthermore, companies are mainly interested in the bottom line and answering to shareholders. When it comes to diversity and inclusion, they focus on compliance and optics, rather than trying to make diverse people feel welcome. In actual fact, data from the Harvard Business Review is irreversibly concluding now that workplace diversity increases the company’s productivity and financial performance. Autistic employees can provide outside-the-box thinking, and some of their ideas can potentially help the company to earn a lot of money. Thus, autistic employees can be valuable assets for companies.
In order to help autistic children build confidence, parents should not just focus on success stories. Instead, parents should provide opportunities for autistic children to learn how to make mistakes and fail with grace. Such repeated learning experiences will allow autistic children to realise that failure will not kill them and that can get back up again. Trying is half the battle won. For example, if an autistic person has a goal of achieving a university degree, it is better for him to give it a shot even if he does not succeed, than to accept external messages that the goal is unrealistic or that he is not good enough even before trying. Moreover, parents of autistic children should show that they are not just tolerant, but actually value people who are different. This should be shown by example, such as by bringing children to diversity inclusion events for race, gender, and neurodiversity.
Website: www.michaeljohncarley.com
Diversity and Inclusion in the Workplace - Marcelle Ciampi, M.Ed. (aka Samantha Craft)
The terms ‘cognitive diversity’ and ‘neurodiversity’ are often mistakenly interchangeably used. ‘Cognitive diversity’ refers to how all human beings have different ways of perceiving the world and solving problems. On the other hand, ‘neurodiversity’ refers to how certain groups of people have neurology outside the defined cultural norm, such as autism spectrum, ADHD, dyslexia, dyspraxia, PTSD, and some mood disorders. The neurodiversity movement is about recognising that such people deserve to be treated equally as contributors in the workplace. Replacing the term ‘neurodiversity’ with ‘cognitive diversity’ denies neurodiverse individuals of their personhood.
The terms ‘diversity’ and ‘inclusion’ are also often conflated. Most company initiatives only address ‘diversity’, which is about increasing the number of diverse employees. On the other hand, ‘inclusion’ is about how to treat and support diverse employees so they have a sense of belonging and security. Companies should focus first on their inclusion mission, creating a culture of acceptance and understanding in order to attract and retain talent. Otherwise, companies might hire but ostracise diverse employees.
Autistic people face several common barriers during the job screening process, due to biases against candidates who seem different from the expected norm.
Firstly, autistic people are discouraged from authentically representing themselves during the job search process. Many approaches are based on a deficit model or a ‘fake it until you make it’ mentality, looking at what is wrong with the autistic person and preparing him to be more non-autistic in order to get his foot in the door. The first problem with this is that autistic people do not need to be fixed; they need a human approach of support and love. The second problem with this is that if the autistic person gets the job because he is presented as someone he is not, he cannot always keep that mask up. This will cause emotional and psychological damage internally, affect the forging of friendships with co-workers, and create the risk of being ridiculed or fired when they start presenting their autistic traits.
Secondly, although autistic people often have a huge amount of experiences and interests to offer, their resumes might be red flagged for reasons like not finishing education, not having higher education, not having enough job history, having too short time periods at different jobs, or having too long time periods at one job.
Thirdly, autistic people’s transparent communication style tend to put employers off. In face-to-face communication, autistic people may be misinterpreted as being too blunt and frank. In email communication, autistic people may be too long-winded and give too many unnecessary details about personal history.
Advice for employers learning to address biases and support autistic employees:
Allow alternative resumes and portfolios where candidates talk about themselves or share their passions, instead of focusing on specific qualifications and employment history when recruiting employees.
Hold meetings and conduct surveys to find out how employees are feeling and what areas the company can improve upon to support one another.
Improve communication and have clear procedures so employees feel safe. Examples are having platforms with follow-up for employees to ask for job accommodation, report bullying cases, as well as raise opinions and complaints.
Offer free healthcare, mental health therapy, and job coaching, including job coaching by an autistic adult who can understand autistic employees’ way of thinking.
Involve autistic people as leaders or advisors in the Human Resource department.
Organise in-depth training about autism, ideally by an autistic person. Teach managers about how autistic people might present, address stereotypes and misconceptions about autism, and remind them to avoid biased snap judgements about what autistic people can or cannot do in terms of skills and roles.
Avoid creating a them versus us mentality or creating a hierarchy by focusing exclusively on how autistic people differ from neurotypical people. Instead, talk about how all human beings have strengths and challenges.
Adopt a universal design approach, making the workplace environment better for everyone and not just autistic people. Examples are sending recruitment overview handbooks to all job applicants or sending meeting agendas to all employees in advance, which can reduce anticipatory anxiety for everyone.
Advice for autistic people learning to self-advocate:
Learn about themselves in terms of their values, interests, life experiences, and co-existing conditions. Use this information to determine what jobs they want, what jobs they do not want, and what jobs they would maybe consider.
Be open to any job experience, internship, or volunteer work that can help to build a resume as well as serve as a stepping stone to build skills and connections.
Build a support team with family members, friends including autistic peers, mental health counsellors, and job coaches. The support team can help to go through the logistics of starting a job, as well as provide reassurance.
Connect with other autistic people, such as by joining online groups, attending conferences, or reading books.
Have high self-esteem and confidence. Loved ones should not try to make autistic people change and conform in order to be accepted. Instead, loved ones should understand and value autistic people wholly as themselves, such as letting them stim and have personality quirks. Loved ones should also find strengths in behaviour that might typically be criticised or shamed, such as saying, ‘Wow, you can focus on video games for six hours straight. Imagine how well you're going to be able to focus if you find a job that you're interested in.’
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