My Story

Hi, my name is Alex and was born in 2012. I was diagnosed with “moderate” Autism in February 2016.

Алехандреи

Everything was fine and on track, some developmental milestones were even a bit ahead of schedule. After my 1st birthday, there were some changes: behaviour, social interaction, eating, and language.

Part of the misconception about Autism is that it is caused by vaccination, especially the M(mumps)M(measles)R(rubella/ German measles) vaccine. If that were the case, why are there children that have never been vaccinated that have Autism?

What lead to the eventual diagnoses were:

• my speech development slowed down
• no response to when my name was called
• preferred to play alone, shied away from social interaction
• Lining up of toys, mostly cars, and like to look at the wheels spin
• Loud noises did not scare me so much as crowds of people
• Rarely make eye contact when interacting with people

We took him for the mandatory 1-year hearing test, which was fine. I spoke to the audiologist about my concerns and she suggested we make an appointment with the Speech pathologist. She did her assessment and agreed that there is a delay in his speech development and more sessions should be made. There too I spoke about my concern that there is more to this and she suggested that we see how the sessions went before looking at other causes for his delay in speech development.

Well, getting off from work and the medical aid benefits being exhausted, was unfortunately not an option. The family suggested that maybe if he started Day Care it would help with the speech and he would make some friends. (At this point he was still at home during the day with his grandparents.)

So, at the age of 2, we send him to a small Day Care down the road. Starting Day Care took some getting used to, but after a month or so he seemed to like going to “school”. The group was small and the teachers patient. His eating was fantastic and we were looking forward to adding new foods. He really enjoyed his lunch box every day, even sometimes the cooked meal they got at the Day Care.

But by the middle of the year, his behaviour started to change, he became more withdrawn, he did not want to eat the foods he always ate and he started acting out against the other kids.

And of course, the few words he picked up at the daycare did not go further. But the teachers were kind and helpful.

Towards the end of that year, many things changed at home, that I am not really surprised that things changed for him too. Grandma and Grandpa moved and because both I and my husband work in Cape Town we thought it better to get a creche close by. The teachers at his old creche were very concerned that the teachers at the new creche would not understand Alex.

And then we moved. Autistic people are really bad at changes; changes to their surroundings, to their routine – to anything. Not good.

It was at the new creche that things came to a point and our journey begins.

Areas that we are working on:

• Language – It is coming along nicely. Some sentences. You can actually have a conversation now. (March 2018)
• Eating – He has a very limited diet he has set for himself. Foods that he uses to eat he no longer wants to eat and even those that were part of his “favourite” food are being refused. No veggies or meat, very little dairy. So you supplement as much as possible. (Update 2018)
• Behaviour – Social interactions like sharing, playing nicely with others, manners (but any child struggle in this area). Some hand movements have developed and some sensory issues.
• Sensory Issues – Alex is Sensory Seeking. No, this does not mean he seeks attention, it means that he is craving more input to his senses than normal. Even though he might be a sensory seeker, he also has some Tactile Defensiveness, Vestibular Defensiveness and Oral Defensiveness.

For a short glimpse into a lesson see the blog post of 28 August, click here

Autism can be beautiful.

• They pay attention to detail and want things to be done perfectly.
• Autistic people rarely tell lies. They are therefore reliable and honest. They are open and reliable regarding their intentions as well.
• They live in the moment. They put everything in to what they are busy with at the time.
• They do not worry about what will happen next or what the consequences may be.
• They are passionate and will put a lot of energy into what they are doing, especially if they find it motivating. Autistic people are not ruled by social expectations and are less materialistic. They can live their lives to the full, without being too worried about what other people may think or say.
• They rarely judge others.
• They often have terrific memories.

… But it can be not so great too

• lack of understanding of emotions
• stuck on repetitive schedules
• cannot understand abstract concepts
• often speaks off-topic and continuously
• often socially awkward or rejected by others
• often bullied by others
• often shy and reserved when asked to speak with others
• may have difficulty with motor skills and coordination
• Prone to depression and anxiety
• meltdowns, burn-out and self-harm

Terms

1. Sensory Seeking: Those who suffer from Sensory Seeking Disorder, otherwise known as Sensory Offensiveness, are constantly in search of ways to arouse their starved nervous systems. Often hyperactive and impulsive, they are frequently labelled, either correctly or falsely, with ADHD. However, if they can get enough of the input they crave, they just might be able to calm down and focus.
2. Tactile Defensiveness: The tactile system is our sense of touch. It protects us from danger and helps us identify different objects in the environment. A child showing signs of tactile defensiveness may: Overreact to ordinary touch experiences (e.g., touching playdough or being touched by someone). Avoid daily activities (e.g., washing face/hands or brushing hair). Avoid light touch (e.g., a kiss) but seek out a deep touch (e.g., a bear hug).
3. Vestibular Defensiveness: The vestibular system is our sense of movement and balance. It tells us where our head and body are in relation to gravity and other objects and supports our vision, posture, emotions, and coordination skills. A child showing signs of gravitational insecurity may: Have an excessive fear of falling during ordinary movement activities (e.g., swinging, riding a bicycle, or climbing). Become overwhelmed by changes in head position (e.g., being upside down). Have difficulty socializing with peers and will avoid group activities. Prefer sedentary (minimal movement) activities (e.g., reading a book or watching television).
4. Oral Defensiveness: The olfactory system is our sense of smell. The gustatory system is our sense of taste. These systems work together to identify scents and odours. They are strongly linked to our emotions and memory. Our sense of taste also helps us identify the texture (smooth, lumpy), flavour (spicy, bland), and temperature (cold, hot) of foods we eat. A child with oral defensiveness shows unusual sensitivity to taste, smell, and texture, and may: Be a “picky” eater (e.g., eat the same food items over and over). Gagging from certain texture, tastes, and/or smells during meals. Avoid messy tactile play (e.g., finger foods or finger paint.)Dislike brushing his/her teeth or washing his/her face.