Tag Archives: South African autism blog

What’s your excuse?

We have all done it, we see a child behaving badly and we judge quietly to ourselves or speculate as to what the issue is. But how many of you have dared to get physical with another parent or their child over behaviour you feel is undesirable?

It happens and more frequently than you think. In my three years, since our ASD son’s diagnosis, of dealing with his variable behaviour we have had a few such instances.

On an aeroplane trip to Mauritius, 1,5 hours into the 3.5 hour flight, my son starts kicking the chair in front of him. I first say no but that does not work. Then I explain how it is not nice for the man in front to be kicked liked that which also does not work. I turn my son to face me so he can kick me, but he likes the feel of the compression on his joints as it helps to calm him. We quickly realise this is a problem so my husband takes him off for a walk. All this time my other 2 children are sitting like angels playing quietly.

The man in front turns around; “do you want me to help you discipline your child? Cause I am happy to. A good smack may be in order” My shocked response; “ I am really sorry he is making your trip so unpleasant, he has special needs and is battling a bit on the flight”. The man in front of me got the final word; “I do not care what your problems are, I paid as much as you did to be on this flight now control your child”.

I want to kick him in the back of the head let alone the back of the chair. It did all go downhill from here – no not because I kicked anyone. The flight ends with my son screaming get me off the plane and kicking the chair repeatedly, bringing him and myself to tears of desperation.

I vowed once we landed we would either emigrate or catch a ship back. Miraculously on the flight home, which was delayed and ended up being 5 hours, he managed perfectly. You just never know what you are going to get.

I am never sure how to handle these types of people and these situations. But being the matriarch of the family, instinct cuts in and when someone is threatening my children I protect ferociously and defend the brood. I, in this instance too have a quick tongue and battle to back down.

On another holiday excursion going to watch a cheetah run, we file into a packed grandstand (mistake number 1) as it sends my sons senses overboard. My husband very quickly moves off with him (mistake number 2), as he wants mom. Mom is however sitting with the other two children.

Whilst waiting for the festivities to begin “I want mommy, I want mommy” becomes my son’s loud mantra for about two minutes whilst I am trying to figure out how to get to him, between the people and with the other two children in tow.

A woman proceeds to get up and starts shouting in my husbands face how my son is bothering her and he best shut him up now. My ferocious instincts kick in. I bound down the stairs leaving the other two crying as I desert them. I address her sternly “ Hey back off he has some problems and is battling, what is wrong with you?” Her husband also has some instincts, violent ones “Shut your son up now or I will hit you.” One minute later my husband and I have calmed the kids down. Everyone enjoys the race, except for my husband and myself as we are both seething. Many people after the cheetah race come up to us and apologise on behalf the couple’s behaviour that they find so appalling.

My son has an excuse for when he behaves badly or inappropriately. I in no way use his condition as an excuse for his behaviour. I am hard on him and expect him to behave well. I understand it can be difficult for him especially when he is sensory overloaded. We try our hardest to not expose him to situations that could lead to compromised behaviour, but it is my no means always possible and is very variable.

Before having had children I would judge quietly to myself (key being quietly to myself) when I saw badly behaved kids. Now I have so much empathy into another parents plight and rather think of constructive ways I would handle the same situation or simply laugh at the situation. I think having a special needs child, I have become rather discerning at pin pointing bad behaviour due to lack of discipline or age appropriate tantrums or special needs or manipulation or tiredness. But I am in a unique situation and do not expect this understanding from all adults. However I do expect adults to behave appropriately in the face of another parent’s adversity and keep their opinions and advise to themselves (unless they know me and can help or have empathy into the situation).

I know because my son looks normal and is sociable and for all purposes appears to not have problems. I can only assume people think we are lying about his problems. I try hard to ignore people like this, and it really is a weakness I am trying to work on. All I do know for certain is that my son has many years to improve his behaviour and to be taught how to behave appropriately. Yes it needs to be taught through repetition and repetition and age and maturity. It is reminiscent of the Churchill quote “I may be drunk miss, but in the morning I will be sober and you will still be ugly.”

We both have a growth path ahead of us. I also have a plea for others out there; think before you judge, speak or over-react – he is a child, he has needs beyond your level of understanding. Even for children without special needs, a child who perhaps simply lacks discipline – they are just children, they are not bad. Where is your common sense, it is not your place to threaten anyone is such a situation. What is wrong with you? What is your excuse!

By Amber Tucker

The vast spectrum

My husband and I have battled to get an accurate diagnosis of our now nearly 6-year-old son. His initial diagnosis was PDD-NOS, we have had a fully Autistic diagnosis and we have had an Aspergers diagnosis. All we can confirm is that he has autistic tendencies and he is high functioning. He has co-morbid conditions as well; such as ADD, low tone, anxieties, dyspraxia, sensory integration problems and learning difficulties. The list is long but most special needs children have a primary diagnosis, with many co-morbid conditions associated to this diagnosis.

We have many times been bogged down in the pursuit of an accurate diagnosis for our son. The co-morbid conditions are easy to see, but the underlying primary diagnosis has had us and many professionals stymied. I think we get stuck as we assume if we can understand his condition intellectually, we can find better treatments and we will be able to understand our son and his difficulties better. With his difficulties come so many behaviours and symptoms that are constantly evolving. Some of these disappear with time and little intervention. Others evolve into normal behaviours and some become issues that need to be addressed. Consuming vast amounts of energy, time and patience. For me a very disempowering aspect of having an ASD child is that you live a life of great uncertainty, never really having much of an understanding about your child’s current prognosis or future potential.

I do not profess to have expert knowledge on the classification of the autistic spectrum. Like parenting it seems to be a constant moving line. We have gone from Autism and Aspergers to the Autistic Spectrum. From Autistic spectrum disorder (ASD), which included Pervasive Developmental Delay specified (PDD) or non specified (PDD- NOS) as well as Aspergers and even Attention Deficit Hyperactivity Disorder (ADHD / ADD) and Obsessive Compulsive disorder (OCD) have been on this spectrum. The latest pending classification is simply Autistic Spectrum disorder (ASD) with all of the above disorders removed.

In a recent discussion with an acquaintance from Autism SA, my comment was that parents would need more accurate classification. Surely the very broad ASD classification will need to be split up focusing on high functioning vs. low functioning children and where my child is on the continuum. Let’s see what evolves.

In truth it does not matter. Behaviour can affect the learning abilities of an ASD child as much as intellect can. Low functioning or high functioning children will be treated similarly behaviourally. This is where remedial and special needs schooling becomes paramount.

Why do these children have behaviours that are hard to control or may be seen to be behaving badly? Due to a multitude of issues, where the wiring in their brains have been compromised, frustration tolerance and communication issues can cause them to lash out. Sensory integration and ADHD affects behaviour, impaired social abilities lead them to not know what is appropriate or inappropriate. All kids need to be taught how to behave. For special needs kids, the lessons just take a lot longer and social cues from others have no impact in fast-tracking these lessons.

Besides behaviours the symptoms of children with ASD vary so widely. This is extremely frustrating as there are no best practice scenarios with ASD as there may be with other special needs issues. It is a condition that manifests neurologically and therefore affects all children so differently. For me this realisation has been the hardest. How in today’s technologically and medically advanced society can we not understand the workings of these brains better?

Research and understanding the ASD brain is developing all the time. With functional MRI’s we can see where our children’s wiring has been compromised and better understand where they may experience problems. But neuro-typical people are also diverse in their skills, abilities, personalities, behaviours and habits, can we realistically expect to understand how then the challenged wiring in an ASD child really moulds and shapes them?

All I know is that it is vast and daunting. As many children grow and change so does their diagnosis. As they enter adult life some have next to no symptoms, some have social problems, some behave a bit strangely, some need life long care, and some need partial assistance. Some will marry and some not, some will have children and families of their own and some not, some will have professional careers and some will work in a trade. To me this sounds very much like parenting any child. We cannot know their futures.

So I try to remind myself daily I cannot plan too far ahead, no ones futures are certain, To do my best, treat the issues as I am faced with them and see where life takes me and my children.

Yes some days I do fail miserably especially when we are facing an Autism crisis, as I like to call them. But I am only human!

By Amber Tucker

Definitions:
1. Autism – A neurological condition, present from early childhood, characterised by great difficulty in communicating and forming relationships with other people and in using language and abstract concepts
2. ASD – is a spectrum of psychological conditions characterised by widespread abnormalities of social interactions and communication as well as restricted interests and repetitive behaviour.
3. PDD-NOS – is one of the autism spectrum disorders and is used to describe individuals who do not fully meet the criteria for autistic disorder or Asperger syndrome.
4. PDD – refers to a group of five disorders characterised by delays in the development of multiple basic functions including socialisation and communication.
5. Co morbid conditions – Having more than one concurrent diagnosis.  Another term for this would be “dual diagnosis”.  Many people with autism have one or more additional diagnoses, such as ADHD.
6. Dyspraxia – Developmental dyspraxia is a motor learning difficulty that can affect planning of movements and co-ordination as a result of brain messages not being accurately transmitted to the body.
7. Aspergers – Asperger syndrome or Asperger’s syndrome is an autism spectrum disorder that is characterised by significant difficulties in social interaction, along with restricted and repetitive patterns of behaviour and interests.