We can all agree, these are very challenging times where we’re navigating uncharted waters attempting to address the threat of the COVID-19 pandemic. The stress and uncertainty are taking a toll on the most resilient of souls, but imagine how compounded this experience is for those who reside on the autism spectrum.
It is World Autism Awareness Day today. It’s a day to shine a light on autism globally and a day to share knowledge and spread awareness. So let’s shine a light on right now. Typically, people with autism struggle with any levels of ambiguity and change of routine, so to confront a crisis that has no clear parameters and creates shocking upheaval on a global scale is a huge demand.
Introducing two of our staff members, from Australia and New Zealand, who are sharing their family experience as they attempt to settle in to our home bases for work and study and how they are managing COVID-19 through the lens of Autism. We hope these first hand stories resonate with all parents and provide inspiration whether your children are neuro-typical or special needs.
Meet Matthew, Kerry Valentine’s son
Kerry Valentine, National Student Support Manager in Sydney, and son, Matthew Kerry Valentine, National Student Support Manager in Sydney, shares her 19 year old son’s story. Matthew is on the spectrum and they’re working daily to manage his anxiety and create a positive outcome on addressing our new normal.
He is now at home with mum and dad working, his brother is stuck across the country in Perth, all his programs have been cancelled – what does this mean for someone who is very much driven by routine and tasks? How can he redirect his confusion from anger to acceptance and willingness to take on new ways of learning.
Matthew’s journey into young adulthood was progressing extremely well and he had been hitting huge independence milestones – taking public transport and opening a bank account. Understandably, Matthew is extremely disappointed that he has to forgo his favourite activities and his frustration quickly turned to anger as he has a limited capacity to process and articulate uncertainty.
“For him, things need to be good or bad; black or white and any level of doubt is a catalyst for a slow simmering resentment that can build into rage if gone unchecked. The key in managing this transition is to look for Matthew’s ‘tells’ – an acceleration in self-stimulatory behaviour, what is called ‘stimming’. This is something often attributed to autistic people and for Matthew, it manifests as jumping, slapping of hands and guttural vocal articulations. It’s his way of releasing his anxiety but for us, it indicates he’s retreating into his mind and we need to reach him and get him back on an even keel,” Kerry explains.
This came to a head last week when Matthew loudly denounced COVID-19 and the “hell it hath wrought on his routine articulating his desire to ‘punch Coronavirus in the head!’” As a family they, slowly through gentle encouragement, reached a point where Matthew began accepting that his place was not as bad as some.
He’s been able to create some positive energy and look at the opportunity this new way of life could present. They’ve established a new routine to walk the dog twice a day, he’s created his online links for remote access to his learning programs and best of all, he’s now signed up with a fitness app and undertaking daily workouts.
This initiative was greatly helped by Chris Hemsworth’s announcement that his Centr app is now be free. “I’ve chosen not to disabuse Matthew of the notion that he’s besties with Thor and instead have marvelled alongside him that Chris is sending him daily emails of encouragement,” Kerry shares. “We’re planning on revealing Matthew’s ‘coronavirus revenge body’ to his brother when he finally returns to us!”
One of Kerry’s favourite resources is from an organisation from Ireland called As I Am and their awareness raising campaign ‘As you can’. Their simple strategies are having a major impact on the acceptance of autism within many sectors of society and work pathways in particular.
Many years ago when Kerry was grappling coming to terms with Matthew’s diagnosis, she attended a parenting seminar on coping with special needs children. The presenter shared a sentiment that has been a consistent truth for her throughout the years – these children are here to make us better people. “I count my blessings daily that we have our beautiful autistic son Matthew here to expand and enrich our lives.”
In Aotearoa, New Zealand Ali Cowley, Lecturer for Design Game Art, and his son Nikau share their new approach adjusting to their new normal.
They started celebrating Autism Awareness Day by joining in Onesie-Wednesday yesterday, and the Pasifika Autism Support Group (PASG) committee plan to post everyday throughout Autism Awareness Month with helpful information and media to all their community especially since they’re unable to meet face to face for events currently.
“What does lockdown mean to my Fanau?”
“Well here we are. The COVID-19 level 4 lock down with all the panic buying, mask wearing, hand sanitising, social distancing, scrutinising of others and the surfaces they touch has all been surreal to say the least,” Ali said. Amidst it all they are able to see the bigger picture – one of all coming together and coming through this alive – “that is good enough for me and my Fanau.”
“My Fanau has had to adjust, like everyone else, in a hybrid fanau-work-school-home schedule that is a loose organic regime. Organic meaning that we flow with our fanau’s needs first and then the rest follows,” Ali shares. Ali and his wife Donna assist their kids through their teachers emails, schoology and other helpful online apps.
They’re utilising streaming services to watch documentaries that interest the kids and recently loved a Netflix documentary called ‘Being Elmo’ about Kevin Clash and his story about his dream to be a puppeteer and work for Jim Henson. Of course that was Nikau’s pick. “It helped him focus on his creative work to balance out his theory work from his teacher,” Ali adds.
We loved meeting Ali and his son Nikau at One Torrens Summit in Adelaide and you can check out their interview here:
Emma Donaldson, Senior Learning Facilitator – Education, has shared resources highlighting the person first approach which is unique to Torrens University Australia and underpins the Voices of Autism MOOC and all of our Special Education courses.
The person first approach is about stepping in to the shoes of a person with autism and creating a safe and trusting relationship for support. One of the first steps to trust is knowing that someone believes in you and wants you to succeed. It is about spending time getting to know the individual and not letting your experiences of autism determine how you interact with them. Our approach is that an effective learning environment celebrates individual strengths and enables an individual to build skills. By finding out what learning means to an individual, we become open to understanding how to improve the learning environment.
Paul is an Aerospace Engineer. Proud Aspie. Founder of EmotionsExplained.com.au. In his video Paul shares his experience about his fidgeting and time needed to process questions. There is more than one way to approach a situation and by creating safe spaces, framing questions clearly and providing adequate time to answer questions, we can provide a platform for meaningful engagement.
Elise is the Founder at Active Support Services, Indigenous VFLW Player for Essendon FC, AFL Disability Ambassador Player. Autism Activist and Consultant, Speaker and Mentor. In Elise’s video covering emotions and regulating sensory overload she shares how exhaustion can follow social interactions; because there is so much going on, the reaction can be extreme. Using a person first approach, we can identify the reasons for the reaction and support individuals to re-centre and regulate.