Autism is a fact of life for me. Our eldest daughter is autistic. Since her diagnosis, a number of my extended family members have also been diagnosed as autistic. So, it is a daily reality for us as a family, and for me in my work capacity.

Autism is a neurodevelopmental disability.  Some people call it a condition.  This means that an autistic person might see the world differently to the way a neurotypical (someone who is not autistic) person might see the world.  The autistic person might interact, communicate and behave differently.  Perhaps we should  start accepting that autism is a natural part of our human diversity.  This does not mean that autistic people do not need support or face challenges.  They very often do need support to help them reach their full potential.  Autism is a lifelong condition.  So, an autistic person will always be autistic. Our goal should always be to help them become the best autistic person they can be and not attempt to change them into a neurotypical person.  The supports required by each autistic person will be different. The level of support will be different, and the amount of support a person requires will differ each day.  This is not unusual.  Even neurotypical people require more support on certain days.

This a sad reality. Non-profit organisations that work with autistic persons and their families, are underfunded in South Africa. With fewer financial resources, there are invariably fewer staff to facilitate or run these programmes. Many organisations are still recovering from the massive impact that the COVID-19 pandemic had on their funding streams.

In addition, the public health sector, education sector and social development sectors are also underfunded. This has a direct impact on the amount of people that could be supported through these programmes.

It is not enough.  Autism is a lifelong condition, so services should be available throughout the lifespan of the autistic person. 

Many parents/caregivers of autistic children are given the diagnosis for their child with minimal support from the diagnosing doctor. Parents/caregivers who can afford therapies and counselling are able to access support, however low-income families are unable to access basic support.

For example, autistic people often require occupational therapy to help with sensory integration issues.  There are many public hospitals that do not have occupational therapists or speech therapists for that matter. Occupational therapist in private practice are simply out of the financial reach for the vast majority of the population who do not have a medical aid. Another example is that parents in the Northern Cape have to travel to Bloemfontein to have their child assessed by a developmental paediatrician.

There are a number of organisations that offer parent support in South Africa, mostly within the non-prof sector.  Autism South Africa has extensive parent support services.  The primary aim of these are to support autistic people within their family unit and community by supporting and stabilising the family so that the family is better able to take care of the autistic person.  The focus is to provide holistic support and counselling for the autistic person, parents and carers, especially on diagnosis with a focus on the early intervention principles.

We have about 43 Support Groups for parents and caregivers across 8 provinces, with about 1313 support group members.

ASA conducted a survey in 2019 that was sent out to parents/caregivers of autistic children to ask about the needs of parents/caregivers. The responses indicated that they needed support and empowerment with behaviour strategies, what is autism as well as communication. Based on this survey, a one-day workshop was developed. Parents/caregivers are taken through theoretical components, but are then able to put the theory into practice by creating a visual schedule, a communication keyring and a sensory bottle. Tools and tips are also given to parents/caregivers to assist them with behaviour when their child is no longer in a regulated state.

The Parent Empowerment programme was successfully piloted in October and November 2022 in Gauteng, in five districts. There were 71 parents/caregivers who participated in the one-day programme. From their written feedback on the evaluation forms, it is clear that the parent empowerment workshop had a positive impact and that it would help in how they would raise their child. For example: “I got to understand that every child is unique in their own way, the most important thing is to know and understand your child so that you can help the to be the best they can be.”

 This empowerment programme aims to assist parents/caregivers in understanding the needs of their child by giving them a deeper understanding of autism, and how they can help and support their own child within their homes.

All children, regardless of their abilities or disabilities, have a constitutional right to a free, decent, and equitable basic education, that will enable them to reach their full development of human potential, and retain their sense of dignity and self-worth. The Promotion of Equality and Prevention of Unfair Discrimination Act (PEPUDA) gives effect Section 9 of the constitution, viz preventing and prohibiting unfair discrimination and harassment for example. We know of schools where a child has been asked to leave, or cannot be accommodated, because they wear nappies (due to their disability).  Turning away a learner on account of their disability is therefore discrimination. PEPUDA states that discrimination occurs when reasonable accommodation is not provided. Accordingly, children and persons with disabilities should not be discriminated against in their access to basic education and further education. In such cases, we refer the parents to the Equal Education Law Centre to ensure that the rights of their child are met.

The state of education of autistic children has improved over the years, but it is still nowhere near to where it should be. While we do support inclusive education, we also realise that there are autistic children who may not cope in a mainstream class or school environment. Inclusive education is the capacity of ordinary local schools and ECD Centres to respond to the needs of ALL learners, including those requiring extra support because of learning or physical disability, social disadvantage, cultural difference, or other barriers to learning. A mainstream school is an ordinary neighbourhood school that all children attend. Mainstream schools are required to ‘reasonably accommodate’ children with disabilities.  According to the SIAS policy, all children should attend their local neighbourhood school first, regardless of their disabilities.

Inclusion should be based on the individual child and not the diagnosis. There are autistic children who will thrive in an ‘mainstream’ classroom if they have the appropriate accommodations and support. There are autistic children who would not thrive in a ‘mainstream’ classroom, and who will require highly specialised teaching environments.

We do still need far more autism specific schools and classrooms.  We also need teachers who have properly trained in teaching automictic children, and who use compassionate teaching strategies that do not cause harm.

Our daughter was diagnosed at 15-years of age. Some autistic girls go undiagnosed for years, for a number of reasons, one of them being ‘autistic masking’.  

In my daughter’s words: “Sadly, some autistic people feel very different from the people around them. They may try to hide their autism to “fit in” with the people around them. This is called “camouflaging” (or “masking’). We could compare this to being like a chameleon who changes the patterns on its skin to fit into the surroundings. The chameleon is still there, but it is trying to look like everything else around it.”

After her diagnosis, we had to ‘grieve’ the daughter we never had, and ‘embrace and accept’ the daughter we always had.  Once we accepted her autism as a fact of life, and very much part of who she was, we could move forward.  Lindsey is incredibly gifted and talented.  I love how she sees the world so differently.  She is what we would call ‘low support’. This means she does not have high support needs, but she still requires support. She once told us that her ‘low support’ autism did not make her experience of autism or her meltdowns any less severe than a high support autistic person’s experiences. It meant that our experience of her autism was not as severe. She is studying occupational therapy at Wits University this year and has overcome so many obstacles to get there.  Our motto – Never give up!

Here I would to share our theme for 2023:

AUTISTIC VOICES MATTER

This year we are focusing on the rights of autistic people in South Africa. We asked the autistic community to please share with us what their rights mean to them in South Africa, and we had three great responses which we have shared with you in our booklet. This booklet can be downloaded here:

https://aut2know.co.za/wp-content/uploads/2023/03/WAAD-2023-FINAL.pdf

We would love to encourage South Africans to listen, not just with your ears, but with their

eyes and heart, and really LISTEN to what autistic people are saying.  We want this message to get out there, and for autistic persons to be viewed in terms of their incredible strengths and talents.  Most importantly, when we speak, interact or work with autistic people we always need to presume competence and accept autistic people for the wonderful human beings that they are.

As with most NPOs in South Africa, we are limited in our reach by our resources.  Many funders only fund projects or programmes.  My question is: So, who is going to actually do the work then? Who will implement the programme or the project.  My appeal to funders is – NPOs need people to do the work. Those people have a right to earn a decent living. So, please fund salaries! Volunteerism does not feed a family.

On the innovation front, we have a project in partnership with the National Department of Social Development and the Centre for Autism Research in Africa, called the Diamond Families study.

The World Health Organization (WHO) developed an intervention to support caregivers of children with developmental delays, disorders, or disabilities (DD). The intervention consists of a weekly intervention where trained facilitators (ranging from expert practitioners to non-specialist community workers) meet with a group of caregivers.  All meetings are in the form of caregiver group sessions, except for three individual home visits. 

Caregivers are the direct beneficiaries of the intervention. However, it is expected that their enhanced capacity to provide a nurturing care environment would translate into improved child development and positive family functioning. This caregiver skills training (CST) intervention is currently being field-tested in more than 33 countries.  In South Africa, the National Department of Social Development (NDSD, project funder and client) established a partnership with Autism South Africa (ASA, project sponsor) to implement and evaluate the WHO CST intervention in South Africa with the mandate to conduct scientific research (i.e., to determine whether the intervention is effective and feasible in the local context).  Autism South Africa then appointed the Centre for Autism Research in Africa (CARA) at the University of Cape Town (UCT) to manage the research project, while the  WHO provides technical support to the project.  This project is in its Third Phase now, with a roll out in the Northern Cape and KwaZulu-Natal in 2023. In 2022 we rolled this out in the Free State and Limpopo, and the North West in 2021.

Communicate regularly through your social media and other platforms. Network as much as possible at the various meetings that you attend.

Our 8th National Autism Symposium takes place from 8 to 10 September 2023 in Potchefstroom. The National Autism Symposium is an annual event hosted by North-West University in partnership with Autism South Africa (A;SA), and supported the South African Association for Child and Adolescent Psychiatry and Allied Professions (SA-ACAPAP).

This year the symposium will be in the format of practical workshops, which will be divided into two streams:

• children, and
• adolescents and adults.

The symposium organising team will be inviting proposals for a workshop presentation at the 8th National Autism Symposium in September 2023.  In particular, we are seeking workshops that are practical for parents, autistic persons, and professionals, and address a specific area in autism, neurodevelopmental disorders and/or child or adolescent mental health.

Researchers, health care clinicians, parents, educators, and social workers are invited to submit a workshop proposal for the symposium.  We welcome workshop proposals from neurodiverse adults, including autistic adults, and persons with other neurodevelopmental conditions.

Our theme: RETHINK & REIGNITE

We would like to encourage submissions that are interactive and collaborative, and that will focus on lively discussions and practical applications.  In addition, we are seeking compassionate approaches to autism, neurodevelopmental disorders and/or child and adolescent mental health, that have an empirical evidence base.

We have ongoing training throughout the year. Details of these events will be on our website and social media.

We are also in the early planning stages of an ART EXHIBITION AND AUCTION later in the year.