The one where we talk about autism

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Autism…
Autistic people are all weird little geniuses aren’t they ?
Autism is just another excuse for bad behaviour isn’t it ?
Isn’t it bad parenting ?
Everyone gets diagnosed with autism these days don’t they ?

NO , actually none of that is true.
The thing that had become most apparent to me over the last few months is that people who don’t have autism in their lives really don’t understand much about it at all.

But they should because acceptance and understanding can make life easier for those with autism.

In this post I’m writing what I have learnt about autism and what I know from experience . I don’t claim to be an expert. Im certainly not.
I think the reason that people think people with autism are all geniuses is that many people with autism have obsessions. They will become obsessed with a subject and learn everything they can about it. For example they may be able to name every single dinosaur and tell you how much they weighed. Many autistic people also have very very good memories.
But generally autistic people vary in intelligence just like everybody else.

Autism is not bad behaviour or bad parenting. It is believed to be a neurological disorder .
I’ve also read an article saying that autism may be a whole body disorder also affecting things such as the digestive system.
From my own experience with O this rings true.
The autistic meltdown is very different from a tantrum.
Most autistic people have sensory issues.
The onslaught of sensory input that most of us would be able to filter out can become too much for an autistic person. For example in the classroom there can be lots of noise , lights , things to look at as well as smells , add to this that touch can also affect them ie clothing can be uncomfortable , itchy .. It can all get to much and cause a sensory overload which can in turn cause a meltdown.
Once in a meltdown the autistic child cannot control themselves , even after the meltdown it can take quite some time for them to fully recover.
Also autistic people have problems with communication , many are non verbal and many don’t understand tone of voice , gestures , idioms , and can also struggle to verbalise how they feel , not understanding or being misunderstood can be extremely frustrating which can also lead to a meltdown. Most parents will do everything they can to avoid meltdowns and when they do happen they can actually be very frightening for the parent and the child , the parents and child certainly don’t need judgement in these situations.

It is actually not easy to get a diagnosis of autism. It can in fact take years. Because autism is such a broad spectrum and affects everyone in so many different ways its not easy to diagnose. Also CAMHS are very underfunded and understaffed as well as often being under trained. Dealing with CAMHS can be frustrating , stressful and exhausting.
So autism is never just a quick diagnosis and an excuse for bad behaviour.

Many autistic children have sleep problems. They can take a long time to settle , and often wake many times at night , again it’s not bad behaviour. There are many possible reasons for this , it is believed that in many autistic people the body does not release melatonin at the correct times. ( melatonin is a hormone that helps you to sleep)
Also autistic people can be disturbed by stimuli all around them , noises , lights , the feel of their pyjamas and find it hard to filter out these stimuli.
It’s also possible that after a day of an onslaught of sensory stimuli it can be very very difficult to switch off and relax.
Melatonin tablets can be a help for autistic people. O now settles to sleep much easier and is now usually asleep before 9 rather than screaming and shouting till after midnight.
Autistic people are not all lonely. Many of them actually enjoy their own company , that’s just how they are and if they do find it hard to interact socially it’s not because they ” aren’t very friendly ” it’s because it’s actually very difficult for them.
They often can’t cope with eye contact which can make them seem awkward , disinterested , but actually eye contact can be excruciatingly difficult for them.
Insisting on eye contact can’t be very distressing.
Many autistic people suffer from anxiety , especially in social situations which can make these situations even more difficult for them.
Often , for example in school
An autistic child can appear to be disruptive. Displaying difficult behaviour and sometimes seeming to enjoy being disruptive this is often the child’s reaction to the fear they feel in a situation they find difficult.
Tics are another thing that many autistic people suffer with , often caused by or made worse by anxiety. They make repetetive , sometimes inappropriate noises or movements.
They don’t do this on purpose , they are not trying to be annoying. These tics are involuntary. And will often be made worse if attention is brought to them.

Autistic people and parents of autistic children don’t want pity or sympathy , or even a cure , autism is part of who they are , they want others to be aware of what autism is and to understand autism , and to support them by allowing them to be who they are.
My psychiatrist told me that the most important thing for my boys is that people around them allow them to be who they are , accept their personalities and support them in doing what they want to do without pushing them to so things that are just too difficult.
As someone said to me tonight ”
If people were to embrace autism instead of being terrified by it, so much progress would be made. ”

Autism is not a tragedy ,
The tragedy is that there is so much ignorance around it.

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3 responses »

  1. really really wonderful post! I can pretty much relate to everything you say regarding my son. So glad you mention the sensory issues and the sleep issues as those are sometimes overlooked and yet need so much ‘understanding’ about them too. Everyone should read your post!!! xxx

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