What is Autism? It seems like a reasonable question to ask but isn’t as easy to answer as you might think. There are so many answers because autism is experienced differently by each individual person. So, giving a simple one-line description of exactly what autism is for your child is near on impossible.
I will share how autism is experienced by my son and husband and how their differences shape our family.
You will have your own unique version, but I’m sure you will be able to recognise and relate to everything in some way.
First, let’s talk about the scary medical terms and the negative labels. You are going to be hearing words like disorder, disability, neurological, syndrome and condition. My particular favourite worst term is co-morbid. What an absolutely awful way to describe having more than one diagnosis.
I don’t want to focus on whether these words are accurate or acceptable because that’s an entirely separate debate. For now I just want to explain them and put them into context.
Autism is a Neuro-Disability
Your child’s brain is different to a neuro-typical (typically developing) child. Sounds terrible doesn’t it? But, it’s really not. Being different doesn’t mean it’s bad. There are lots of positive and interesting ways that autistic brains work too.
The term disability can often be thought of as negative, but I find it a useful word to use when trying to explain autism. Particularly when my son is getting into trouble for something he couldn’t help. Disability doesn’t have to mean less able, it can mean differently able.
The autistic brain is not defective or under developed or wrong, it’s just different. Kind of like the difference between an X-Box and a PlayStation or Apple and Microsoft. They do the same job but in different ways.
This different brain means that your child feels, sees and experiences the world entirely differently to other children. This is why your child often behaves and reacts unexpectedly.
You are programmed to behave and react in a neuro-typical manner and they are programmed to behave and react in an autistic way. Your expectations of how a situation should go are pre-set from your own previous experience and by the auto functions in your brain
Who is to say which one is right or wrong?
Autism is a Spectrum Condition
A spectrum condition means there are a range of common difficulties and characteristics that make up the diagnosis. Each difficulty or trait in turn then has it’s own scale. So, one autistic child could be extremely articulate and chatty, but another could struggle to find any words at all.
An autistic person could have an amazing ability to concentrate on details and complete intricate artwork but struggle to put on a pair of socks.
How each person experiences each of these difficulties varies enormously. There is no set rule that if you are skilled at one area you will automatically struggle with another.
In addition to this there are environment, personal well being and mindset factors to consider. How the autistic person feels and where they are can play a big role in how successfully the brain can function on that day. Some days things can happen and others are a bigger struggle.
This is why autism is so complex to understand and why it’s impossible to give a definitive strategy or solution that suits every autistic person.
So, the term autism is an overarching general description that can mean very different and individual diagnoses.
I told you it was complicated!
To try and explain this in more detail I’ve broken it down into sections.
The five main areas of difficulty:
- Information Processing
- Sensory Processing
- Social Understanding
- Emotional Regulation
- Communication Challenges
Yep, more jargon! Let me explain what these actually mean in plain English.
Information Processing
Basically, this is how information is dealt with by the brain. Information can be something that is being asked or told but it can also be something that is seen or felt. How you will react to the information is handled by your brain. The information may not get to the correct place as quickly or efficiently as in a neuro-typical brain. This can cause a delayed reaction which is often misinterpreted as ignoring or not listening. Alternatively, the information may be handled by the brain in a different way so a reaction may seem extreme or strange to a neuro-typical person.
Sensory Processing
Autistic people feel things differently. Again, this can be confusing to understand but essentially the senses can either be much more sensitive or much less sensitive. The senses are sight, smell, touch, hearing, taste, and also one you probably haven’t heard before, interoception. This is the sense that tells you things like if you’re hungry or tired or need the toilet.
Taking hearing as an example, it isn’t just loud noises that are a problem. It’s background noise, chatter and even lights buzzing that can cause stress.
Noises that you may not even notice. Not necessarily that you wouldn’t hear, but noises that a neuro-typical brain automatically filters out will often be heard by an autistic person. Often these are heard equally or at the same volume level as each other.
It takes effort and energy for an autistic brain to decide which noises are the important ones to focus attention on. Noisy environments like schools or shopping centres can be extremely draining and difficult to cope with.
Social Understanding
This is one of the most difficult areas. Difficult to teach and so hard to watch your child struggle with.
Autistic people don’t always recognise or possess the subtle skills required for successful social interactions. For instance, not being able to read body language and facial expressions effectively.
Not understanding nuance, sarcasm or jokes. Taking comments literally, and also not instinctively recognising when they should stop doing or saying something.
All of these things can be seen as annoying or weird by their peers meaning friendships are difficult to maintain, particularly as they get older. Your child can be left feeling isolated and confused because they have no clue what went wrong.
Emotional Regulation
There is often a developmental lag in the skills needed to control emotions to the perceived normal or expected level. So, a ten-year-old may only have the skills you would expect of a five-year-old for example. You can’t judge your child’s capability to control their anger, frustration or disappointment purely by their age.
Emotions are bigger and more extreme for an autistic child. Much of this is due to all the other additional stresses they are coping with on a daily basis as well as the brain handling it differently.
Think for a moment about how you react when you are having a stressful day. I’m guessing you lose your temper more quickly if you are dealing with lots of other demands or you are exhausted after a busy day. If your stress bucket is already full it doesn’t take much to tip it over the edge! Am I right?
Now consider this. Your child’s stress bucket is probably half full when they wake up so bear in mind that they aren’t even starting from empty. Does that explain why they seem to blow up over something small? Or cry when something goes wrong.
Communication Challenges
For us the communication challenge goes hand in hand with social understanding. If you misinterpret social cues, then you often say the wrong thing.
If you don’t understand why someone changes their tone of voice you would have no idea they are expecting a different outcome. Being vague or using questions instead of direct instructions is really confusing.
For example, a teacher might say to the class “would you like to open your books and start your writing?
My son would just sit there and carry on chatting. He wouldn’t recognise that his teacher was telling him to open his book and start his writing. If challenged he would say, “she asked me if I would like to, and I didn’t”. And of course, strictly speaking he is absolutely correct, she did ask him. But that isn’t what she meant.
However, if his teacher had said “please open your books and start your writing” he would open his book and maybe get his pen. Ideally his teacher would say “please open your writing book and get a pen” then once he’d done that, she would need to remind him what he was writing about. He isn’t being defiant he just doesn’t understand the inferred meaning and needs direct instructions.
Autistic Traits and Common Behaviours
So, now we’ve talked about the difficulties let’s move on to the common traits and behaviours. Again, these can vary, and this is just an overview rather than a conclusive list of possibilities. The main ones are:
- Special Interests
- Repetitive Behaviour
- Desire for Sameness
- Angry Outbursts
- Meltdowns
- Shutdowns
Special Interests
This is an intense focus on one particular subject or activity. This can be for long periods and not change for years or can be relatively short lived, changing after a few months.
It is the thing that your child is obsessed with, will spend hour after hour doing and then talk about incessantly given half the chance. They will exclude all other activities in order to focus on this and you will worry that they are wasting their life away and not experiencing a balanced childhood.
It can be anything from trains to musical theatre or even bacteria. Anything at all can be a special interest. Unfortunately, ours tend to change quite regularly, usually after we’ve spent a fortune buying everything related to it.
Repetitive Behaviour
This can be any number of physical movements. Some common ones are tapping, spinning, hand flapping, bouncing, walking around in circles, pressing buttons or fidgeting.
This is called stimming. It is a way to calm down and relax or just to settle the brain. It is important not to try and stop a child from stimming, often it’s to help with concentration or to satisfy an underlying need. But, sometimes it can be a sign of stress building up. The more stressed your child is the more they need to release it by stimming. If you tell them off for stimming, you are creating more stress.
Another common repetitive behaviour is watching the same thing over and over again. The same tv program or video clip or film on repeat.
My son would watch the Disney movie Cars on a loop when he was little, every single day. Now he’ll binge watch an entire series of Mr Bean and then start over again. Or he’ll watch YouTube videos of Dan TDM playing Minecraft over and over again. Everyone else in the house is being sent crazy by it, but he loves it.
It’s another important form of relaxation and distraction. A time to switch off the brain to the stresses of the day and submerge into another familiar and soothing world. I often use this method to help my son self-regulate after a meltdown.
Desire for Sameness
Whether it’s eating the same food for every meal or sticking to a set daily routine the autistic brain doesn’t like change. Even just moving from one activity to another can be difficult.
When your child is busy doing something, they won’t want to stop. They have trouble imagining that a different activity could be as much fun as the one they are currently doing. Even if they have really enjoyed doing this new activity in the past, they will be reluctant to try it again.
Any transition can be tricky because you are asking the brain to move from something comfortable and settled into a state of uncertainty.
Angry Outbursts
The ability to control frustration and disappointment is impaired by the autistic brain. This is due to a combination of lagging skills and the brains different wiring.
As the mother to an autistic son and the wife to an autistic husband my experience tells me that the wiring causes the anger, but the skills required to handle it don’t develop until later. Being able to switch the logical part of the brain back on when the amygdala (fight, flight or freeze response) has taken over is really hard.
My husband still loses his temper and gets extremely angry and shouty about things that frustrate and disappoint him. He does the stomping, shouting and the storming off upstairs thing, just like my son.
The only difference is that my son will throw things around, slam doors, punch walls and throw himself on the floor as well. Thankfully, with maturity my husband has learnt to regulate himself a bit better now and just gets out of the way to calm down.
He still processes the feelings in the same order as my son. They both react emotionally to situations before thinking logically, so are prone to overreacting. They are extremely quick to lose their temper then get upset and ashamed that they have lost control again. The ability to self-regulate improves with age and support.
Meltdowns
Meltdowns are the extreme end of angry outbursts. When situations have pushed your child so far that they are no longer in any control at all. The anger has taken over their entire being and there is nothing anyone can do to stop it.
This is a storm that just has to be ridden. Only ever intervene if there is a danger to your child or others. Eventually it will calm but your child will be physically and emotionally exhausted and will need time to recover.
Meltdowns are experienced differently by each individual person but generally follow a pattern. Once you’ve worked out the cycle of your child’s meltdown you can learn how to help them at the right time and in the best way.
Shutdowns
Shutdowns are when situations arise that your child cannot cope with and they literally shut down to protect themselves. This is when they block out everything going on around them, stopping talking, listening and reacting.
From hiding under a hood to curling up in a ball on the floor. They often involve stimming and they are only going to stop if the threat or danger is removed.
Shutdowns can be triggered by things like too many demands or too much noise or change. Be calm and supportive, try and reduce any noise or light and just be there for reassurance when they feel safe enough to emerge.
Conclusion
So those are the big ones to get your head around but it’s also really important to understand that being autistic is not an illness.
It doesn’t need to be cured, neither can it be. It needs to be understood and treated with kindness.
Autism is a lifelong condition. An autistic child will be an autistic adult.
Autism doesn’t get worse or better, however, the way it affects your child will vary throughout their development. This is because additional pressures from school or society will demand more from your child than they know how to cope with. This often results in fluctuations in mood, behaviour and mental health. There will be times when everything feels like a huge struggle and other times when the balance is perfect, and life feels easy.
Parenting or teaching an autistic child using neuro-typical methods is never going to work effectively because their brain is different. Their responses, beliefs and experiences are different. Their operating system is different. You wouldn’t put an X-Box game in a PlayStation console and expect it to work would you?
Always remember that your child is just different, not disordered.
Your child is wonderful, amazing and EXTRAordinary!
Love and Hugs,
Nadine
xxx
Now head over to this post to find out how you can help your child get the support they need at school
All content created for and written by myextraordinaryfamily.com is based on my own personal experience as an autism mother, partner and advocate. I am an expert by experience and do not have official qualifications in autism. I live my daily life constantly learning, supporting and advocating for my neurodiverse family and speak from this point of view. Any advice given is purely based on what has worked for me and my extraordinary family and I offer no guarantees that you will have the same results with your unique family.
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