One of our SSE team members interviewed four parents that have children with Autism to share their experience. Thank you to Elfreda Baartman, Kwena Mokoboki, Dineo Mosiane and Agnitia Sejake for the opportunity to learn from you and share your story. 

Finding out about the diagnosis

The journey to finding a diagnosis for your child can be very challenging. When a child does not meet developmental milestones, it can be concerning for parents, as it was for the parents we spoke to. 

Initially, Elfreda noticed that their daughter was not reaching her milestones, such as not speaking proper words and not showing joint attention. They underwent several tests, including an MRI and a brain wave test, but the results were normal. Finally, at the age of three, and seeking several professional opinions they received a diagnosis of autism.

Similarly, Agnitia noticed that their child was behind in reaching developmental milestones, such as sitting up, and struggled with eating solid food. They sought medical advice, but it took several years of consultations with doctors and specialists, as well as navigating the public health system, before receiving a diagnosis of autism at the age of four.

Kwena also noticed delays in their child’s development, such as slow speech or excessive crying, but a family member told her not to worry since “boys develop slower than girls”  At age 5, a teacher raised concerns about hyperactivity, which then prompted Kwena to see a specialist. 

All parents faced mixed emotions upon receiving the diagnosis. On the one hand, they were relieved to finally have an explanation for their child’s developmental delays. On the other hand, they felt anxious and scared about what the future would hold, as they were not familiar with autism or anyone who had it in their families. Kwena specifically mentioned that she often caught herself asking the question: “Why me?” in fear that she wouldn’t be able to give him the support he needs. Receiving a diagnosis has helped all the parents in seeking the right support for their child. 

Accessing resources and support

All the parents faced challenges in finding the right resources and support for their child’s needs. Elfreda turned to Autism South Africa, which provided educational resources and support, and later joined the organisation as an employee. Agnitia had difficulty accessing resources in their rural area, but was able to find support through a local autism organisation and online forums. Kwena did a lot of Online research and eventually came across the “World Health Organisations Caregiver Skills Training Programme for Families of children with developmental disorders or delays.” The workshop was a game-changer for her and her family as they learned to communicate with her son, help him to self-regulate and engage with his surroundings.

All parents mentioned the importance of support groups where you are able to connect with other parents who experience similar things. A few parents also mentioned that their faith has played a huge role in finding solace and motivation to continue each day. 

Elfreda and Dineo are both on the ShonaquipSE’s Parent Network. Elfreda shared that “The Parent Network helped to advocate for my daughter and to also share my challenges and also to get support because whenever I go through a dip or, you know, when I go through something, then they are there, they’re always ready to support. And every Wednesday we have training. They asked me also one time to speak about autism, and in that way, I could also equip the Network to understand my child better, and I’m really grateful for the Network. As I always say, there is real power in the Network.”

Dineo shared something similar: “ It’s good that one can see the similarities of what we all go through and have an opportunity to also talk about your own challenges to people who are experiencing similar challenges, although their child might be of a different disability. So it doesn’t take away from the fact that challenges are still out there. But it just builds on being part of a community and enlarging that community to say, even if there isn’t a parent of a child with autism around there are parents of children with other disabilities.”

Misconceptions about Autism

One common misconception highlighted was the belief that people with autism lack empathy or emotions.Elfreda explained that their child is very empathetic and loving, but just expressed it in different ways, such as through hugs and kisses rather than verbal expressions of love.

Dineo shared that her son really enjoys playing with sticks. A misconception that her community had was that her son is aggressive and dangerous because he plays with the sticks. There are often many attitude barriers that she has to overcome daily in her community. 

Agnitia shared that many people thought that her child has autism because she as a parent did something wrong during the pregnancy. Others have also expressed that she has a child with a disability because she is cursed or due to Karma. She shared that her daughter has many strengths and that she is proud to be her mother. Her mind is brilliant and their family is definitely not cursed to have her in their lives.

Advice for New Parents

Parenting a child with autism requires patience, love, and dedication. The journey can be challenging, but with the right support, it can also be rewarding. Here are some tips from these two parents to help new parents navigate the journey. 

1. Be proactive in seeking answers: If you suspect that your child has autism, it is essential to seek answers as early as possible. Do not wait for your child to reach a certain age before seeking help. It is also essential to be persistent in seeking answers from doctors and other healthcare providers. 
2. Seek support and resources: There are many resources available to parents of children with autism. Seek support groups, organisations, and online communities that can offer advice and support. The ShonaquipSE’s Parent Network is one of the support groups that you can join. If you would like to join the network, please send a Whatsapp to 071 371 9103, and we will assist you to join the family. 
3. Educate yourself about autism: Understanding autism is crucial to providing the right support for your child. Take online courses, read books, and seek advice from professionals to gain a better understanding of the condition. 
4. Be patient and loving: Parenting a child with autism requires patience and love. Your child may have difficulty expressing their emotions, but they still have feelings. Show your child love and affection through your actions, even if they do not verbalise it. 
5. Celebrate small victories: Every milestone that your child reaches is a victory. Celebrate their achievements, no matter how small they may seem. It will boost their self-esteem and encourage them to keep trying. 

These parents’ experiences show that seeking answers, understanding autism, and showing patience and love can make a significant difference in your child’s development. As a new parent, do not be afraid to seek help and advice. 

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