Living with an autistic child

“It is never too late to expand the mind of a person on the autism spectrum.”

“A lot of work goes into keeping him safe, keeping him regulated, keeping him calm, keeping him interested and to keep drawing him back into our world even when autism in his world is so much more compelling”. These were the words shared by the TODAY’s Parenting Contributor Carrie Cariello, as she took audiences through a day with her autistic son in a video shared on Youtube. She emphasized how difficult it is to constantly watch over him because he has quite an abrupt manner where he easily crowds and interrupts people, but is crazy funny and interesting at the same time. She believes her son experiences the world through touch. This is because he wants to touch everything he comes into contact with.

Autistic Spectrum Disorder (ASD), better known as autism, is a disorder that affects the neurological development of those affected. It mostly affects three skills: social, behavioural and communication.

Autism South Africa (ASA) describes autism as a ‘developmental disability’ that inhibits the affected party from interacting well with people, communicating effectively and learning in ways that are different from others. The causes of ASD are not yet definitive. This means that the genetic and environmental causes of the disorder have not yet been identified.

Like Cariello, parents with autistic children go through a lot in order to prepare their children for a visit outside the house. Life with an autistic child is quite challenging. It is a very layered condition, and there is so much to come to grips with after the child has been diagnosed with the disorder.

Vicky Lamb, the National Education Facilitator for Autism South Africa, estimates that around a million people in South Africa have been diagnosed with autism. Over the years, the numbers diagnosed with ASD have increased significantly. in 2014, autism was diagnosed in 1 in 166, and in 2018 diagnosis had grown to 1 in 59. But this may not be as a result of the condition becoming more prevalent, as much as diagnosis and recognition of the condition in patients is becoming more accurate.

ASA notes some early signs of ASD:

Delayed or absent speech development
Extreme or poor senses (touch, smell, taste, sight, hearing)
Poor imaginative play
Abnormal sleeping patterns
Preference for playing alone

Children with autism are often misunderstood. This is why ASA is committed to educating, empowering and training people and communities to understand autism, and subsequently, treat those affected better.

ASA is hosting the 4th Annual Autism Symposium next week – from the 6 – 9th of July 2019. The Autism Symposium is in association with the Institute for Psychology and Wellbeing at the North West University (NWU). It will be held at the NWU at the Potchefstroom campus.

The symposium will be hosting an array of speakers who will be offering practical skills on how to deal with autism. They will be looking at subjects such as toilet use, feeding, literacy, communication, and language. As these are subject parents find themselves most challenged by.

Autistic children have issues with verbal and non-verbal communication, their cues are often delayed. Children with ASD are very ritualistic and, thus these habits are affected. They also often struggle with sensory input – sight, sound, touch, smell and taste, can be overwhelming and can result in emotional dysregulation and outbursts.

As an example, feeding an autistic child can be very challenging. They often limit what they eat, and are very picky eaters. Their growth and overall nutrition can, consequently, be affected.

Day 1 and 2 (6 – 7th July) are the days the workshops are being held, each workshop costs R150 and you can attend as few or as many as you like.

Workshops Topics Include;

Learning to use the toilet with Antoinette Bruce-Alexander (Educator and mother of Autistic son)
Listening circle for parents with Prof. Chris Venter (Counselling Psychologist) and Rumando Kok (Clinical Psychologist)
Let’s eat! Managing feeding issues with Hanlie Degenaar, Linique Hanekom ( Speech-language therapists) and Monique de Klerk (Counselling Psychologist)
Listening circle for Autistic adults with Prof. Chris Venter (Counselling Psychologist) and Rumando Kok (Clinical Psychologist)
Optimising Autism with Tania Meinyczuk (Autism Strategies Network)

Day 3 and 4 (8 – 9th July) will be an exhibition of presentations from key experts and medical professionals within the field on a variety of topics, attendance for the two days of exhibitions is priced at R1950 per person.

Presentations Include;

Sensory integration
Maintain regulation and manage meltdowns
Spelling to communicate
Autism from tummies to toes
The Autism voice

The event looks to provide parents with steps and advice on how to deal with issues around toilet training, learning to read, communication tools and how to optimise your children through their autism.

The event is open to parents, autistic individuals, social workers, and healthcare professionals. It will be a space in which individuals feel comfortable to have meaningful conversations about the realities of autism, and how best to work with what you have.

There will also be a number of healthcare professionals present on the day to offer academic presentations on the phenomenon of ASD.

Dr Temple Grandin was one of the first adults who disclosed his autism diagnosis publicly. ASA is motivated by one of her quotes: “It is never too late to expand the mind of a person on the autism spectrum”.

This Autism Symposium is about just that; expanding the minds of the people living with autism, their healthcare providers, their teachers, and of course their parents.