The well meaning things people say….

Ok so this post is a bit of moan but I hope it’s a moan that serves a purpose. First I need to start by saying how wonderful our friends and family have been throughout our autism journey so far. We have had great support and could not ask for better people in our lives. So please, to all of the friends and family that may read this post it is not in anyway directed at you or intended to disparage the immense support you have given us all.

Secondly I need to stress that we are certainly not the kind of people who go out of our way to be offended. In fact the phenomena of “excessive sensitivity” is something I find particularly annoying in others. You know the type, just because a person has something bad happen to them or is a bit different in some way they suddenly feel the need to be “offended” by pretty much anything anyone says about the topic. These irritating, self-righteous twats often seem to grasp at the most ethereal of straws to work out a way in which they can feel victimised. The masters of this art are of course the religious who take their offense to absurd levels by shouting, rioting and even killing for the most absurd “insult” to their religion. I really can’t stand this type of professional victimhood and give anyone full permission to call me on my bullshit if I every start to do this about autism.

So, with that said, and at the risk of sounding like a total hypocrite, I am going to have a bit of a bitch about a certain phrase that we have learned to hate. We understand that the said phrase is used in a well meaning way and that it is uttered so as to show empathy, understanding and to help normalise our situation. But sadly the phrase comes across as the exact opposite of all these things. It’s a funny quirk of human communication that the exact same words can convey completely the opposite mean depending on one’s perspective.

This is not really a moan about a how much we hate a particular selection of words. It is instead analysing our reaction to those words to delve a little deeper into some of the emotions that we have experienced in our autism journey. The aim is to increase every ones understanding of that experience.

So what is this killer phrase?

The phrase in question is the seemingly innocuous

“Oh but all kids do that”

Seems innocent enough right? I mean why would anyone get upset about that perfectly innocent and honest observation? Please allow me to explain.

Of course there is nothing annoying about that combination of words per se, it all depends on the context. The situation I am talking about is where they are uttered after some anecdote about unusual behaviour in one’s child has been told. The effect of this phrase is dramatically different when speaking them to parents of autistic children.

When two parents of normal kids are speaking the situation goes something like this:

 

Parent A – Tells some story about unruly or strange behaviour to parent B.

Parent B- Listens sympathetically and then responds with: “Oh don’t worry I think all kids do things like that, the other day my little monster did…… “(B then recounts some similar war story)

A – Feels reassured that her little darling is not a complete brat after all and is also reassured by the fact that B is not judging her parenting skill as she has shared a similar “failing” in her child. A feels understood and B is happy that she has helped out her friend. Both parties feel closer as they have shared a similar experience and everything is nice and lovely.

This is a perfect typical and normal interaction between two parents. Psychologically what is happening is that A worried about their child and is seeking comfort and reassurance from B. B understands this and normalises the situation by telling a similar story of their own.

Now the same situation with between parent C (who’s kid has autism) and parent D goes something like this:

 

C – Tells some story about their child’s autistic behaviour

D – Listens sympathetically and then respond with “Oh don’t worry, I think all kids do that, the other day my little monster did….. (D then recounts some similar war story)

C – Thinks “Oh god, she really does not understand at all. I know my kid isn’t normal why is she trying to say that he is? I’m trying to explain something about my kid’s autism and she is just dismissing it as normal behaviour. Do they think I’m making a fuss over nothing? Perhaps I am making a fuss over nothing? Is it all in my head? I don’t know ahhhhhh why don’t people understand. This is horrible, I want my mum!!!!”

 

The problem here all stems from the fact that C is not seeking reassurance, instead she is trying to educate and possibly to get some sympathy. D has misread the situation and tries to do what one would normally do i.e. she tries to reassure C that everything is ok. This disconnect spins D in to a spiral of paranoia and makes things worse.

Why not let it go?

So knowing all of the above, why don’t we just let it go? We know why people say these things and we know their intentions are good. We can’t reasonably expect other parents to fully understand our situation and all the emotions that go with it, so surely a rational person would just accept that people are trying to help and leave it at that. And as I stressed at the beginning, we really are not the type of people that takeoffense easily. So why does it then still irritate so much then?

Well if we were purely rational creatures then we could just ignore it. Sadly, though, humans are anything but rational and even understanding the psychology behind the use of these words will not dispel the irrational part of us that lurks beneath the surface. Having thought about this at some length I have two explanations as to why this phrase still causes us angst despite the full knowledge that it is not intended to do so by those who utter it.

Reason 1 – It feeds our paranoia

One of the things with autism is that it is a hidden disability. For the most part kids with autism look perfectly normal. There are no distinct physical characteristics particularly associated with autism with the possible exception of some research indicating some correlation of subtle facial characteristics. But, whilst scientifically interesting, these facial features are too subtle for anyone to spot an autistic kid in the street.

So autism can only really be spotted by behaviour. The problem with this is that autistic behaviour can very easily be confused with being naughty or bratty. This sets up an interesting dynamic in the mind of parents like us. We know our son is very different from other kids but no one looking at him can tell this. So when Bean is being a bit autistic in public we get odd looks from Joe public. Often these are looks of judgement, they just see a naughty or ill behaved child and of course we as the parents feel judged. Hell, I know I judge other parents like this so I am damned sure others do the same to me.

If Bean were physically disabled in some way or perhaps had a more outwardly obvious condition then the looks would be completely different. Anyone with a heart that saw an obviously physically handicapped kid having some kind of melt down would immediately feel sympathy rather than scorn for the parent involved. But with autism, because the condition is hidden, we don’t tend to get that sympathy.

So we continually feel judged when we are out in public. There is a constant nagging paranoia that people don’t quite get the fact that our son is very different from other kids and blame us for being bad parents. Sometimes we even feel the tug of this paranoia from people who know that Bean has autism because his autism isn’t that obvious.

Most people’s perception of how autistic people are is from the kids we see on the telly. The problem is that “TV autism” isn’t actually that representative of “real life” autism. The producers of such shows will select the most obviously autistic kids to put in whatever documentary they are filming because it just makes for better telly. So on TV we get the spinners, the hand flappers and the ones that make odd loud noises every 30 seconds. Bean does not really do any of those things but, and here’s the crunch, this does not in any way mean his autism is less severe than those kids.

The outwards signs of autism are very little to do with how significant or severe the autism actually is. Many kids, girls in particular, are very good at masking their condition and learn how to hide it. Even for kids with quite severe autism you might spend an hour in their company and never know. But underneath this mask they have very significant impairments. On the other hand some autistic kids with relatively minor impairments to their lives might have some obvious outward signs like odd voice or a propensity to certain physical or verbal tics. If one spent an hour in their company one could come away with the impression that they were quite seriously effected.

So when someone tells us that “Oh all kids do X”. It just “confirms” the paranoid thought that people don’t think Bean is that autistic and that perhaps we are making a bit of a fuss over nothing. Now the rational part of me knows that none of our friends actually thinks that but the thing about paranoia is that it is irrational and often that irrational part stomps all over the more reasonable part of our brains.

Reason 2 – It reminds us of our past failures

Pretty much every family I have spoken to went through a phase of denial about their kid’s autism. Indeed I spoke a bit about my own denial phase in my last post. The internal dialogue that goes on during this phase of the autism journey is one of convincing oneself your child is actually normal. All parents of autistic kids have tried to convince themselves that the weirdnesses they are seeing are just what kid’s do.

There then comes a point when we can no longer deny reality and we are forced to accept the truth. As discussed in my last post this is often a very painful experience particularly when one partner has accepted things prior to another. So basically every parent of an autistic kid has told themselves and each other the line “Oh well all kids do that.” many many times. When we now hear this line from others I guess it reminds us of our own past foolishness.

This, of course, is a painful memory and stirs up feelings of shame and guilt. Again the rational part of us knows that we have no reason to feel that guilt anymore. We know we have moved on and that it was perfectly normal to go through a denial phase. But that irrational beast that lies just underneath the reasonable brain gets poked by this phrase. The beast stirs and starts to whisper to our conscious brain:

“You really fucked up didn’t you? You thought your kid was normal like this moron does? It’s one thing for this guy to think that about your kid but what kind of fucktard can’t spot autism in their own child? Oh and don’t get me started on how that made your poor wife feel…….”

Again all completely irrational but knowing that does not stop it from happening. If merely knowing that one’s behaviour was irrational stopped that behaviour most psychotherapists would be out of work overnight!

Imagine:

Therapist: “You know your life is pretty good. You have a nice family, good friends and a decent job. There is nothing for you to really be depressed about.”

Patient: “Gosh, you know your right I hadn’t thought of that I will stop with this irrational depression nonsense right away. God your good!”

Therapist: “No problem that will be £50”

Patient: “Thanks doc”

If only!!!!!

Conclusions

I don’t think there are any firm conclusions from this ramble other than the obvious fact that this phrase is deeply irritating. Again I just want to stress that we have been over whelmed by how wonderful our friends and family have been so this is not in any way a judgement or an accusation. Instead, I hope, it has provided some insight into the inner turmoil that may be going on with parents of kids with autism. It has been remarked, by friends, that both me and my wife seem to be incredibly calm about the whole thing. That’s a big compliment but trust me beneath the calm surface there are some serious riptides of irrational paranoia! If they spill onto the surface sometime please understand it’s nothing personal.