Big up to the autism massive

Big up to the autism massive

This is a post about the other parents we have met through our autism journey. This group has been dubbed the “autism massive” by my wife and I. It’s not just a group of parents of kids with ASD’s as it includes parents of kids with other special needs as well but as the Bean is autistic it was then name we chose.

This post below is mainly observations and comments about mothers because, as per my previous post, most of the people I have met in this way are women.The mothers of children with special needs are themselves a special breed of woman. The emotional and often physical strain of coping with this situation both takes its toll but also develops certain skills. Whilst the personalities of these mummies vary greatly and the specifics of each situation also vary I have observed some general features.

1 The armour of patience

As any parent will tell you the whole parenting gig in general requires a lot of patience. Kids are, well to be perfectly blunt, fucking annoying half the time. Sure they are cute sometimes but generally they are self-absorbed, demanding, rude, ill-mannered and loud little beasts. It takes years to train them to be decent and polite human beings and during that period the potential irritation caused to parents is immense.

But parenting kids with special needs requires all the normal parent patience and then a whole load more on top. This super human patience is essential to survival in the special needs environment as without it insanity will quickly follow. For the parents of “normal” kids reading this you know how irritating your little darlings are with their repeated questions, seeming inability to follow simple instructions even after telling them 10 times, their tantrums and their constant whining? You know how all that tests your patience every day? Well imagine that but at 10 times the intensity. That’s what these super mums deal with every day.

The problem with kids like the Bean is that the normal tactics for training (civilising) kids do not work. If a child is doing something that is deeply annoying then the parent will take steps to modify their behaviour so that they don’t so it any more. We can dress it up however we like in fluffy language but at the end of the day this process is exactly the same as behaviour modification in all animals (I am nor using the word “animal” as pejorative here, humans literally are animals). There are two main methods for doing this: bribery and coercion or, if you like, carrot and stick. So one praises or rewards kids for good behaviour (or at least stopping annoying behaviour) or one punishes kids for bad behaviour. This works for dogs, rats, parrots and humans (both child and adult BTW) but not cats apparently but then they are just a higher species.

I think most parenting manuals these days would agree that the carrot is superior to the stick and I’d tend to agree. However the “stick” still has its place, now obviously I’m not talking about literal sticks I merely refer to any form of punishment. One of the most basic forms of punishment is actually a stern look or a stern voice. Most normal kids do not like it when their parents are cross with them conversely they do like it when their parents are happy with them. The crossness and happiness of the parent is itself the most fundamental carrot and stick. This is hardwired into our animal brains through millions of years of evolution we are conditioned to want to please our parents because that is how we learn and those that fail to do so in times when we were preyed upon by other creatures tended to die off quickly.

So if I praise the Zoo (my non autistic 2 year old) he gets all happy and chuffed with himself conversely if I frown at him or use the “cross daddy” voice he does not like it. With the Bean, however, both these tactics are equally irrelevant. He simply does not understand that I am angry or pleased with him. He is just as likely to laugh at the “cross daddy voice” because it sounds funny to him, he simply does not get that I am angry with him. Early in our autism journey I have lost it with Bean and really shouted at him in a moment of anger, he simply laughed in my face and jumped on me thinking I was playing a rough and tumble game with him.  I need to stress that he was not being deliberately belligerent, he simply thought loud noise that came out of daddy was funny!

So then the question is how the hell do you train and “civilise” a child with autism? If your most basic parenting weaponry has been almost completely blunted by the indifference of the child what the hell do you do? I guess physical violence would work but there is no way I’m going to hit my child on account of the fact that errr I’m not a total Neanderthal bastard. Reasoning is equally pointless, I mean reasoning with a normal 4 year old is mostly pointless but with an autistic child with language delay it’s just a complete nonstarter.

So how the hell do you teach your child to stop doing all those irritating things that kids naturally do? The answer is that it’s really hard and it takes a lot longer and fro a lot of the behaviour you simply need to put up with it. Obviously anything dangerous needs to be dealt with but the daily irritations simply need be taken and accepted as part of your life. It one of the most incredibly frustrating things I have ever experienced and that is why all parents of kids with autism develop this supreme patience that even the most saintly of saints would be in awe of. This patience is worn like armour and it protects us from having complete breakdowns. It is an armour tempered in temper tantrums, smelted in the furnace of furious meltdowns, and hammered strong by blow after blow of maddeningly inane echolalia.

The people of the autism massive are amongst the most patient you will ever meet.

2 The looks that gives the game away

But no protection is complete. Even with the learned patience described above there are still signs that give hints at a less calm inner life. When speaking to other parents I have noticed that despite the immense, sometime oddly serene patience there is a slightly manic glint in their eyes. They talk a bit quicker and slightly more intensely than most. You can tell that despite the brave face the eyes that look at you are also eyes that have shed many tears and that underneath, no matter the stoic exterior presented to the public, there is an inner turmoil and pain.

My wife is like this. To the untrained eye she seems supremely calm but to those in the know this calm surface belies the rip tides of stress beneath. I can tell when the angst is reaching boiling point by that slightly manic look in her eye and by a certain quickening of speech and tone. And I see those signs in many other special needs parents, particularly the mums. These amazing ladies are valiantly holding it together but sometimes only just by the skin of their teeth.

The other give away is the ones that “zone out”. Rather than a manic look there is more of a vacant look in the eyes. Whilst there is autistic chaos going on around them these parents just carry on almost as if on auto pilot. They carry on dealing with whatever crisis or melt down that is occurring but it’s almost as if part of their brain has escaped to a happy place and so they are not wholly present. So they kind of look a bit stoned.

I have been told by my wife that I fall into this category. I’m not quite sure what happens but I have caught myself zoning out in this way before. I have had the Bean screaming and wrestling with me in a public place but rather than getting stressed it’s kind of like part of my brain escapes inwards and blots out what is happening. It’s almost a dreamlike state and everything is not quite real. I can function perfectly well and do what I need to do but the “feeling” is deadened somehow. Normally the stress catches up with me a while after the incident subsides so I guess it’s some kind of learned stress survival mechanism that helps me cope with the trauma in a calm way. Again I’ve noticed this in other parents as well.

3 Such good people

If anyone where foolish enough to tell me to my face that having a kid with autism would make me a better person I’d probably poke them in the eye just to prove them wrong. Or even more sickening is the phrase “god only gives special kids to special people”  that would prompt a very quick “hail Satan” followed by a foul mouth diatribe about how God can take his special gift and shove it up his holy arse hole sideways. But as a fellow inmate of the special needs parents asylum perhaps I may be permitted to point out that is there some truth in this platitude?

Now I know that in reality the autism fairy does not discriminate when she comes to bestow her dubious gift upon unsuspecting families. There are probably plenty of unpleasant characters that have had entry into the special needs club forced upon them but I have yet to meet another special needs parent that I genuinely didn’t like. All the people I have met have been warm, friendly, slightly insane and on edge but none the less a great bunch of people.

It could be that the arseholes simply don’t know how to cope and just don’t bother to mingle with the wider special needs community. So I only get to meet the nice ones. Or perhaps it could be that the experience itself brings out the best in people?  Maybe it makes us less judgemental of others, more accepting of difference and more sympathetic to the plight of our fellow humans? Whilst none of us would choose to learn these lessons in this way maybe we should take heart that this tough lesson may have a positive impact on the way we act towards others. It has certainly been my experience that all the ladies and gentlemen of the autism massive have been really good hearted people.

Thinking about it further we can begin to see why this might be the case. Being a special parent takes it out of you. It’s a tough gig and one is left emotionally and physically drained most days. I guess this is true of “normal” parenting as well but it’s just a more extreme and intense experience when you have a kid with autism. I simply have no energy left for any of the petty drama’s that seem to plague normal people’s lives.

The little jealousies, rivalries and competiveness about ones kid’s achievements that often seem to dominate the parenting experience are simply not a luxury we can afford to indulge in. I really don’t give a flying fuck if some kid can do quadratic equations at the age of 4 I’m far too busy worrying about whether the Bean will actually learn to speak properly or will ever be toilet trained. Special needs parents are, in my experience, all focused on our own kids and ensuring that they achieve their potential however limited that might be. This, of course, is how all parents should be! Now I get the fact that special needs parents are like this through necessity rather than through any innate saintliness or wisdom but none the less it’s good to observe a group of parents focused on their kids and not really worrying about “the competition”. So maybe in a twisted way this whole situation does make us better parents. Perhaps there are some lessons to be learned for “normal” parents?

Conclusions

So the people who we have met over the last couple of years that we have labelled “the autism massive” are amongst the most patient and decent people we have met. We know that, like ourselves, these virtues are a learned out of necessity to survive rather than because of any innate moral superiority but regardless these virtues should be praised. Credit where credit is due.  At the same time the group we find ourselves in are all slightly insane, on edge and vulnerable. This makes me feel incredibly protective towards them and I know that his is reciprocated. It’s an interesting new peer group we find ourselves in and we think we fit in quite well. I’m sure we have made some good friends for life. So something very good has indeed come out of one of the most difficult periods of our lives. So “Nuf respec for the autism massive booyakka sha”* – as the common vernacular goes.

Special bonus shout out to the single mums

So I just wanted to end up by giving a special shout out to the ladies I have met that are doing this journey on their own. I have yet to meet a single dad parenting a kid with special needs but if any of you are reading this the obviously this applies to you as well!

My wife and I have a very strong relationship but this whole autism thing has tested it. I won’t over dramatise by saying anything like “tested to breaking point” but let’s just say where there was sickening mush and lovey doveyness before there has been a certain degree of prickliness, snappiness and rancour from time to time. The cause of this discontent has been the fact that we have had to lean on each other like never before. If someone is leaning on you for strength just when you feel weak then of course this will create tension. But the strength gained by having a partner there to help you when you falter is immense and I could not have done this without my wife’s support. So I genuinely don’t know how the single mums of kids with special needs survive.

The physical practicalities of only having one pair of hands is one thing but not having that day to day emotional support is perhaps the thing I would find most difficult in that situation. Just being able to have a good old moan at the end of the day to someone you know absolutely gets where you are coming from has been vital to our survival so without that how would one vent? These ladies have to dig deep and find the strength to cope through necessity. So for those of you single mums reading this I just want to let you know I think you are amongst the bravest and most amazing people I have ever met. I know reading these words is probably only a tiny comfort but I just want to say I get it, I feel the pain and I think you are all incredible.

* Interesting side note. Sacha Baron Cohen’s cousin Simon Baron Cohen is one of the UK’s leading autism researchers!

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