Action in Autism aims to help every parent have the information take care of their child with autism Photo Action in Autism
South Africa – Autism spectrum disorder (ASD) or autism is a broad term used to describe a group of neurodevelopmental conditions. People with ASD often demonstrate restricted and repetitive interests or patterns of behaviour. Kids with ASD struggle in different areas of life and the organisation Action in Autism aims to provide parents with the knowledge to help them.
ASD is found in people all over the world, regardless of their race, ethnicity, culture or social standing. There are indications that autism is on the rise but there remains a debate whether it is because of environmental issues or frequent diagnoses. Action in Autism Director and founding member, Liza Aziz, explains autism is a neurodevelopmental condition which impacts certain parts of the brain.
“Autism is a neurodevelopmental condition which impacts the development of the brain and affects a particular part of the brain. Predominantly it affects communication and social communication. When you and I are talking, we automatically understand the rules of communication …We understand the norms in society. We understand non-verbal communication. People with autism see the world very differently from you and I. They don’t automatically know the cues of communication.”
This means they might avoid eye contact or stare at a person. It is also difficult for them to change a conversation or keep the conversation fluid. Sometimes they might take a longer time to process things. They might show their emotions a little later or laugh in a serious situation. It impacts how they process information and at what rate they process it.
The different levels of autism that a child can have and the support they need
It is not an easy process to identify if a child has autism. Although autism is hard to diagnose before 24 months, symptoms often surface between 12 and 18 months. As children get older, the red flags for autism become more diverse. There are also different types or levels of autism, explained Aziz.
“Some need more support. They would need support for day to day living. You get those with high support needs which is one on one facilitations. Then you get those with medium support needs. Some facilitation but not one on one maybe and then you get those with low support needs. They go through life but still have difficulties with social situations. We have to be very careful when we giving labels because a person with a very low support need can get into such a situation that they can become completely incapacitated.”
Challenges faced by parents of children with autism
Having a child with autism is no easy task. There are many challenges parents face and those who are single parents face even greater challenges. There is a lack of information available in South Africa as well as a support structure, said Aziz. This alone makes it incredibly difficult to get the help and knowledge required to look after your child.
“It really drains you when you are a full-time support person or caregiver. You don’t get any kind of support from the government. The people around you have such a lack of understanding, and you can go out into society and find you feel so ostracised and you can feel alone … There are not enough schools to accommodate our learners. Not enough people who understand autism. Not enough diagnosticians to treat our people.”
This leads to parents being burnt out by doing much more than they need to. They also need to educate teachers or helpers in how to treat their child and how to educate them. With the lack of information available, it makes it difficult to explain to others what life is really like.
Action in Autism
Action in Autism arose out of a need by parents. With there being little to no support from government, an organisation had to be formed to help parents. The organisation was created to provide support to those in KZN specifically and support them, said Aziz.
“There was no schooling facilities. When my son was diagnosed, 18 years ago, there was just one school catering to 19 students who had low support. For the rest of our little ones who was diagnosed, there was no space for them … We had a mass meeting and asked the MEC of Education to attend. We had an open mic meeting and parents just got up and cried telling their stories.”
They now have multiple disciplines including speech therapists, occupational therapists and they have started a bi annual skill transfer program. It has been going on since 2012. They train parents and also offer it for free to those who cannot afford it.
The organisation works on donations. There is no support from government. To raise funds, they are having a ladies fundraising lunch on the 15th October in Durban at the Action for Autism Hall. The guest speakers will include Sarah Pyoos, educator and Comrades Marathon veteran, Emma Hunt, autistic writer and artist, and Anna Lukshmi, stand-up comedian. The tickets cost R300 and Aziz has promised it will be an event worth attending.