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In the first episode of The Sit Down Season 3, I had a conversation with Vezi Silwanyana who is the founder of Inam Advocacy Group, a non-profit organisation advocating for people living with autism with a focus on children and young people, and Ilana Gerschlowitz, author of Saving My Sons and managing director of The Star Academy which is a treatment and recovery centre specialising in autism. Their experiences with autism are slightly different yet so real and distressing.

If you haven’t watched it, you can check it out below:

I had already read Ilana’s book and I knew a bit about the experiences Vezi went through with raising a child who is on the spectrum. I won’t lie, it was difficult having this conversation because you worry about crossing the boundary of sensitivity on issues such as one about children. We don’t have a language or a way of dealing with and understanding autism in the African context because we also need to be sensitive to our African way of dealing with mental illness. That said, it breaks my heart that even though we have Vezi and Ilana share their stories, we still have many African children with Autism hidden in homes, tied up, locked up, and in most cases they go undiagnosed.

I am very passionate about subjects that pertain children and injustices that children face. And it saddens me and brings me to tears that we are not prioritising the diagnosis and treatments of conditions such as Autism that are treatable. We have the possibilities of giving children a better chance. We haven’t scratched the surface in how we deal with and address Autism in South Africa.                                          

Part of Ilana’s response to the question about the process of focusing on your child was, ”as parents, there is so much that we can do. And this immediately reminded me of the discrepancies between the haves and the have nots. The more privileged you are, the better access you have to care and the hope of a better future for your child and ultimately, “there more you can do” and have access to.

An autism diagnosis takes a huge financial and physical strain on caregivers. It is even more stressful when there is no diagnosis, and you don’t know what you are dealing with. Autism is a developmental disorder, it needs to be treated, mentally, physically, and spiritually. It needs nutrition, access to the right medical care, for one to be mentally strong and to have hope of better days. Hope is so expensive right now. I know we say hope is free, but with the COVID19 pandemic and the financial and economic impact it has had, can you imagine the little hope you have as a caregiver to care for a child who is already diagnosed with autism with little to no resources?                                                                                                                  

Some of the lessons I took away from the interview are that firstly, let us teach our children to be kind. Ilana tells the story of her second son having this immense pressure to do well and relieve his parents of any additional pressure because he knew his parents were fighting this Autism battle.

We must be kind. We don’t know what the next person and child is dealing with. We must also know and be conscious of our own bias and in addition raise kids who are aware of theirs and who will hopefully be free of bias as they move in the world. Is it possible to raise children without bias in this world? I don’t know. But if we teach our children how to be loving, accepting, and kind – half the work will be done. We need to stand up for every child, whether it is my child or a child on the spectrum, children MUST be stood up for.

And lastly, because we have a large part group of undiagnosed cases of Autism in South Africa, we need to educate ourselves to be kind, lend a hand where can, and check in on parents dealing with the daily pressures of raising a child on the spectrum. 

When it comes to Autism, nutrition, gut health, mental health for the whole family and emotional support are extremely important. If there is a family you know affected by Autism and whom you suspect may need either of these resources, share where you can. Even if just an ear to listen.

The Autism community needs support. We know that early intervention and diagnosis is very important for autism. Autism has no cure, but it can be treated. We need awareness and programmes for children on the spectrum and for the schooling system to be more accommodating. Support causes such as Inam Autism Advocacy Group.

Should you be community based or be involved in community work, perhaps reach out to The Star Academy for training on assisting on the ground where you are.

Therapy centres are important to be able to impart some education and information in communities.

Again, I’d like to emphasise that we check in on our friends, raising children living with autism. Ask them if they are okay and how they are doing. This means a lot, especially for moms!

Here are some Instagram responses. I value the responses and us engaging and having the necessary conversations around Autism.