World Autism Awareness Day was last week – April 2, 2020. “Approximately, 1 in 62 children is diagnosed as autistic.” The statistic was supplied by Sumaya Babamia who is director of Jozi4Autism.
World Autism Awareness Day is a United Nations designated health day – one of seven UN health-specific days. Globally, organisations provide a vital lifeline for those living on the ASD [autism spectrum disorder]. With the Covid-19 pandemic hitting South Africa and a national lockdown, Johannesburg’s lobbying and activist organisation, Jozi4Autism had to cancel its scheduled annual fundraising walk at the Zoo Lake on March 17. In place of the walk, Jozi4Autism is presenting: The Free Live Virtual Summit on April 5, 2020- this Sunday.
Jozi4Autism Free Live Virtual Summit- at a glance
Date: Sunday April 5, 2020 from 10am-3.30pm
Schedule of sessions: Details on the Facebook page. Link: https://www.facebook.com/events/547128795926900/
How to participate: Go to the virtual summit Facebook page. The event will be streamed live. Guests will be live on video on the page
Interactive: People may watch and ask questions in the comments section of the feed. Panellists will answer in real time on video.
Talks: Sessions include conversation with autistic adults, expert doctors panel, parent’s perspective and a presentation by directors of Jozi4Autism
T-shirts: There would have been t-shirts included in the walk entrance fee that was supposed to be held but due to the lockdown, no orders can be processed, so please check the website, post lockdown. T-shirts are listed on the site at R100 each but prices may change after lockdown
Jozi4Autism website: https://jozi4autism.org.za/about-us/
Early intervention – why we need organisations like Jozi4Autism
Autism can present in many ways. Some individuals may be high functioning I.e. have good communication and learning skills while others may be severely impaired I.e. non-verbal, have other disabilities including cognitive/learning challenges.
Early intervention has been shown to play a critical role in improving social, communications and learning skills.It is beyond challenging. Organisations like Jozi4Autism provide vital support, information and facilitate access to services. In South Africa, with severely under resourced communities, our challenges are immense. Early intervention, therapy and support makes a huge difference to those diagnosed with ASD. Sadly in South Africa, many do not have the means to access early intervention and therapy in general
Some years ago, I read Andrew Solomon’s book, Far From the Tree: Parents, Children and the Search for identity and was intrigued to read that early intervention is available in the USA, free of charge, for those under three. The benefits depend on each state but it is available. [Source: https://www.cdc.gov/ncbddd/actearly/parents/states.html] Solomon is a professor of clinical psychology at ColumbiaUniversity Medical Center. Highly recommended book.
Far from the Tree- the book- devastating and yet inspirational chapter on autism
Far from the Tree, is divided into chapters which deal with the importance of embracing “neurodiversity” – including autism, Deaf culture, dwarfism, Down’s Syndrome, schizophrenia, disability, child prodigies, children born as a result rape, young crime offenders and sexual and gender identity. The chapter on autism is utterly heart breaking and also inspirational and hopeful. Solomon’s interviews with parents and children, makes for sobering reading. During our lockdown, our bookshops are closed. Books are not available by delivery. Buy the e-book on Amazon for $20 https://www.amazon.com/Far-Tree-Parents-Children-Identity-ebook/
Sumaya Babamia is director of Jozi4Autism. She is a speech and language therapist and tells us about the organisation:
TheCapeRobyn: When was Jozi4autism started?
Sumaya Babamia: In 2014 the annual Light It Up Blue event was hosted by Autism South Africa (ASA) where the Nelson Mandela Bridge was lit up blue as part of a global initiative, which aims to raise awareness and support for autism. Inspired by Nelson Mandela’s legacy as a champion for equal access to services and education, I approached ASA with the idea to create greater awareness within previously disadvantaged communities. As a member of both Autism SA and F.E.E.D, a charity that works to feed, empower, educate and develop impoverished communities, there was a natural fit to join hands and pool resources to make this vision a reality. In 2015 the first autism awareness walk was held at the Johannesburg zoo.
In 2016 our flagship event – the Autism Awareness Walk, a collaboration between Autism SA, F.E.E.D, and CWF was held. Around 300 people came out in support of the Autism Awareness Zoo Trot. Soon after the zoo trot a meeting was held inviting members of the collaborating organizations to become part of the planning committee for future autism awareness walks. The objective was to evaluate the effectiveness of the event in raising awareness among more under-represented communities, and to improve upon the practical and logistical aspects of the event.
In 2017 a core group of ladies from the three organisations was established. It was recognized that the vision for the event reached far beyond just creating awareness and that there was a need to develop an identity that could grow as our vision and purpose expanded. And so Jozi4Autism was born on March26, 2017.
In 2019 more than 1000 people supported our walk for autism awareness at the Johannesburg Zoo. Unfortunately this year, due to the corona virus, our walk had to be cancelled.
TheCapeRobyn: Please tell us about the virtual summit and how to support Jozi4Autism?
Sumaya Babamia: We are still committed to raising awareness about autism, so we have decided to take our campaign online and on Sunday April 5, we will be hosting a live, virtual summit on our Facebook page. On the panel we have invited three autistic adults living full and productive lives who will share with us their experiences growing up and navigating adult life. We will also be hearing from doctors, therapists and our supporting non-profit organizations. To join the free live summit go to: https://www.facebook.com/events/547128795926900/
Before the lockdown we set up an online store to sell branded Jozi4Autism t-shirts and a donation page. However due to the lockdown, t-shirts cannot be printed or delivered. Supporters are still welcome to purchase t-shirts provided they are aware that they will likely only receive their t-shirts after the lockdown has been lifted. People are also welcome to donate to Jozi4Autism.
TheCapeRobyn: Please give readers insight into autism?
Sumaya Babamia: Autism or Autism Spectrum Disorder (ASD), refers to a development, complex condition that affects communication, social skills, behaviour, and learning patterns. These patterns include difficulties with social interaction, verbal and non-verbal communication, thinking and learning differences as well as differences in sensory perception.
Autism is a lifelong disorder that varies from one individual to the next. The symptoms and severity of autism vary greatly, and range from giftedness to severe impairment. The nature of intervention depends on the severity of disorder.
There is no single cause of autism. The condition is attributed to a combination of genetic and environmental factors.
TheCapeRobyn: Autism appears to be on the rise and it is not easy to diagnose?
Sumaya Babamia: The incidence of autism is more prevalent than ever before. This means that more cases of autism are diagnosed. Approximately 1 in 62 children is diagnosed as autistic.
Autism awareness is important because of public misconception of the disorder.
The nature of autism is such that it is not easily identified. The person may ‘look normal’. For this reason, autism is referred to as the ‘hidden disorder’. Many autistic people may be misunderstood and referred to as unruly, crazy, misbehaved and so forth. Furthermore, families and children with autism are often subject to judgmental attitudes from communities. This can be deeply upsetting for families and make it more difficult to manage the condition.
Knowledge about autism, increases the chances of accessing service provision, schools, and support structures.
- Promote awareness of the prevalence of autism in Johannesburg with particular focus on under-represented communities
- Encourage social integration of children and families on the autism spectrum within the context of the community
- Promote accessible delivery of services
✔ Autism South Africa website: aut2know.co.za Information about key organisations in South Africa, providing assistance with diagnosis and treatment and other useful links:
✳ Autism South Africa
Tel: 011 484 9909
✳Action in Autism – KwaZulu-Natal
Tel: 031 261 1154
✳Autism & Asperger – Namibia
Tel: 00 6461 22 4561/2