Friday, 16 February 2018

Is Autism Even Real?

Word cloud question mark with title around it. Anyone who knows me at all, particularly if you've read my Awesome Autism post, will realise pretty quickly that this is an ironic title, not something I personally believe, or have even considered. It is, however, something I hear a lot, so I would like to take this opportunity to explain why, in my view, the title above is a really stupid question. This will be based on observation and experience, which, in fairness, is something people really ought to rely on, before making silly statements that are likely to cause upset and distress to others, instead of just letting any old garbage fall out of their open mouths. Is Autism even real? Let the ranting begin.

Firstly, a word about asking people about or commenting on their illness, ailment, disability, hair colour, or anything else really. I mentioned this in a previous disability post; What Walking Stick Users Want You To Know and I really feel it's true in all those situations, and possibly others, too. Why are you asking or commenting? Does it come from a good place, such as concern, or a willingness to help or offer reassurance? Or, are you just being nosy? It's likely that the person will be feeling a little self-conscious about something that makes them stand out and if they weren't, they will be, if someone helpfully make a thing out of it. So, for anyone that has an opinion, unless it's helpful or positive, it's usually best to do the world a favour and keep it to themselves. 

This is particularly true when it comes to parents with children who are behaving in a less 'seen and not heard' way than is perhaps acceptable to some. I have lost count of the times when someone has commented, tutted, or otherwise made their feelings known about the behaviour of a child in a public place, but, here's the thing, thse people are only observing, probably, five minutes of that adult and child's day, with no knowledge about what led up to it, what other issues that child might have, or any other aspect of their lives. Danielle, from Someone's Mum, explains this whole concept brilliantly in this post, Autism? More Like Bad Parenting, illustrating perfectly the difference between what you see in a snapshot, and the bigger picture behind it. I understand that perhaps the noise, or other commotion, might be invading people's head space for a little while, but that might be nothing compared to what this family are going through. Here is my favourite anti-bullying poster, which I think is a great way to illustrate this point. 

Anti-bullying poster with advice on how to be kind online.

Back to the point of this post. Is Autism even real? I sort-of understand a little bit where this question comes from. Autism is a spectrum and a child can sit anywhere on it. They can be a little bit autistic, or they can be severely autistic, or anywhere in between. Autism can take on many forms, and no two autistic children are the same. This makes it a condition that is exceptionally hard to understand, for anyone who doesn't have the pleasure of knowing an Autistic child and, trust me, it is a pleasure. Autism is a complicated, confusing, demanding condition, but it also offers moments of pure joy for everyone involved too. Some of the comments I have seen regarding Autism recently, have included; 

'It's just a way to excuse a child's behaviour.' 

'Parents don't want to discipline their children.' 

'It's the Snowflake Generation, everything has a label.' 

So, let's address these, one by one. Firstly, the behaviour comes first. Autism has a very specific pattern. If your child is Autistic, there is no comparison to 'normal' bad behaviour, you know they are 'different' from an early age. They might have specific triggers that cause them to behave inappropriately, such as noise, or changes to routine. These triggers will be the same every time, they won't just be random episodes of 'bad behaviour'. The child will have their own unique way of expressing themselves when they are distressed, whether it's hitting out, screaming, running away, etc. This might seem like random 'naughtiness' but it isn't, it's that child's coping mechanism, and it won't change. 

Secondly, parents of Autistic children cannot discipline their child for their Autistic behaviours anymore than a parent could discipline a child for hiccuping or sneezing. It's part of a medical condition and, aside from the fact attempting to punish the child would just make everyone more distressed, it wouldn't work. Have you ever tried to stop a child from blinking, by putting them on the naughty step, or taking away their sweets? Ridiculous, isn't it? I'm sure the majority of Autism parents would love to be able to use a naughty step or other discipline and have the behaviour go away, but it won't. Only by managing the condition and learning what works day to day, can the behaviours connected to it be anticipated and avoided, but it can't always work, because not every environment and situation can be controlled. 

Thirdly, the NHS doesn't want to pay for treatment for ANYTHING. I am a huge fan of the NHS, they do a fantastic job of keeping most of us alive with amazing treatments and care, but they are vastly underfunded and if you want a diagnosis, and therefore treatment for a long term medical condition, you have to work really hard for it. You have to go backwards and forwards to your GP many times and they will rule out everything that is cheaper and easier to deal with first, before investigating a more long term condition. Many parents have years of coping on their own before they get a diagnosis. It is in no way an easy way out, or a quick 'label' to make their child feel special, or to get them special treatment. Autism is a diagnosis nobody wants, it doesn't make the condition easier to deal with, it just sometimes gives everyone a few tools to manage the condition day to day. 

My final point is this. If you encounter a child having a meltdown, or other inappropriate behaviour, ask yourself this: Aside from perhaps invading your eardrums briefly, how is it bothering you? It might not be the way things were done in previous generations, but if it's not affecting you, than let it be. It's worth considering that perhaps the advance in medicine that have led to conditions such as Autism and ADHD from being diagnosed, might have saved this generation from a really unhappy childhood, where they are misunderstood and punished constantly for things that they have no control over. Autistic individuals are intelligent, loving, and articulate, but they see life a lot differently to the rest of us, they just need a little understanding and so do their parents. 

Autism acceptance poster



  1. There certainly needs to be more awareness raised around autism because a complete lack of understanding can lead to some hurtful comments. X

  2. Sometimes I hear people saying 'She must be autistic', or 'Autism? there's no such a thing!'. In the times we live in, the Golden Age of Google, we all are doctors. We all heard something, we kind of know what is it all about, but most of us don't even know what autism really is.
    Thanks for spreading the awareness! And especially for the part that explains why you can not 'discipline' a child with autism. Hope some people will finally understand x

  3. This is so interesting to read (in a good way) I am waiting for my youngest to be assessed for Autism. Before I realised my girl may be Autistic I tried to discipline her for her behaviour and it just didn't work....We have been trying for about 7 years to get help and up until the last year we just go fobbed off by our GP, school nurse and the school. We had our last appointment about 5 months ago we are due to see someone else soon to push things further. You are right there is no quick way to go about things.x

  4. Fantastic post.
    As a parent, I hate feeling judged. It happens all too often. I couldn't imagine how difficult it is to be a parent of a child with Autism, and then having to hear snide remarks.
    I was always taught that if you didn't have anything nice to say, keep your mouth shut. I don't know when or why this attitude was lost, but it only seems to be getting worse.

  5. This is such an interesting post - raised lots of questions in my mind. Used to work for an autism assessment service so it's interesting to hear your thoughts on the NHS.

  6. A brilliant post and so true about the NHS approach.

  7. I have heard a lot about autism these last few years. Everyone has a different opinion of what it should be and shouldn't be.

  8. Such a shame you don't get the support you need from the NHS but great that you are raising awareness for the condition

  9. I can't believe the NHS do nothing about this. All I can say, Lucy, is that whenever we see a child having a meltdown or tantrum, we make sure that we react with kindness and concern for the parent. Hands up, before I had kids I was judgemental but once you become a parent you realise all children have their challenges and, as you say, a tantrum is a snapshot not the big picture.

  10. I hate seeing people judging when a child isn't happy in public. Makes me cross as they know nothing about the child and behind the child

  11. I think your point nailed it on the heard, lack of understanding in some people and blatant ignorance in others leads to such hateful comments.


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