D day

Ok so I know I said my next post would be a follow up to the shipwrecked post but that’s taking a while so here is one about the Bean’s formal diagnosis.

Diagnosis day

This is a post about a rite of passage in most family’s autism journey. It is the day when a formal diagnosis is received for your child. Through the autism massive (our name for the group of other families we have met along the way on this journey) we have heard about many different diagnosis experiences. They all differ. Some are positive, some are negative, some are frustrating but all the emotionally charged. This is the story of our D day. It’s been over a year now since the Bean was formally diagnosed so this is what happened that day.

The background

My wife and I already knew the Bean had autism prior to his formal diagnosis. The process was a gradual realisation punctuated, for me anyway, by one “penny dropping” life changing day that I have written about before. We had both accepted our son was autistic about 9 months before he got the official diagnosis so in some respects the formal diagnosis it was errr just a formality. That being said it was not quite the casual confirmation of our suspicions that we expected.

The wait for an autism diagnosis can be long. When we first requested to see a specialist through our GP we were told it would take at least a year. This was completely unacceptable to us and, thankfully it was to the GP as well, he suggested that he refer us out of the area which he can do if there is a long wait locally for services. He asked us if we had anyone we wanted to see. One name had already been suggested by a family friend in the know: Gillian Baird.

Dr Baird’s unit was based in Guys and St Thomas hospital in London so it was not too far for us to go. We had both researched her and she is perhaps the foremost expert on autism diagnosis in the UK. She has an OBE, a long distinguished career, has written books, published a multitude of papers, gives talks and is generally the dog’s bollocks when it comes to all things related to autism diagnosis. Our GP came up trumps and got us in to see her. But it still took nearly nine months to get the appointment.

During that 9 months we had been reading up on our son’s condition, meeting with other families, engaging with educational professionals about Beans progress and generally immersing ourselves in autism world. Everything we learned just confirmed our conclusion that he had autism and by the time D day loomed there was no doubt in our minds that the diagnosis would be as simple confirmation of what we already knew.

The cruel glimmer of hope

That being said though I think we both were clinging to some slivers of hope. For me I was secretly hoping that Dr Baird would tell us that: “Yes Bean is autistic but he’s really bright and with the right care he will go on to do wonderful things in science or engineering or IT.” The realist part of me knew that she could not possibly say exactly that but I was kind of hoping that she would imply or hint that he was likely to be one of high functioning autistic people who can achieve well academically and lead relatively normal lives.

The process

So we trotted up to London the night before and stayed overnight nearby. My father and mother in law joined us and they would be looking after Zoo whilst my wife, the Bean and I went to see Dr Baird. We arrived on time and shortly were met by Dr Baird. She is a woman in her late 60’s, had a kind but professional manner and she spoke very poshly. The kind of voice that exuded utter confidence in her own abilities but at the same time was not condescending or patronising. A good start!

I remember thinking that I want her to understand right away that we were not precocious parents that were in denial. Part of me needed her to see that we had already accepted that our son had autism and that we wanted her to give it to us straight. I can’t remember the exact words I used to convey this message but I remember seeing a look of some relief on her face. I guess a tough part of her job must be breaking news to parents who don’t want to hear the truth. She must have seen many parents cry or get angry at her so I am sure I saw relief on her face when she realised that we were not going to be like that.

So whilst the Bean played with some of the many toys in her room we went through the preliminaries and discussed what was going to happen today. The diagnosis consisted of three parts. The Bean would go off into another room with a speech and language therapist and an educational psychologist. They would run him through a series of play based tests. At the same time Dr Baird would talk to us about our experiences with Bean (this parental evidence is an important part of the diagnosis) and then finally the third part would be that, after a quick conflab, Dr Baird and the other two members of her team would come back and deliver the verdict then and there. All in all it would take about 3 hours.

Of course prior to this Dr Baird had been privy to a whole variety of reports on the Bean that had been written over the past two years. She had access to the speech and language reports nursery school reports, the reports from the early year special needs educational professionals and probably some others I have forgot about.  This combined with her interview of us and the formal play based testing would give enough evidence to form a diagnostic opinion on the Bean.

The questioning

So Dr Baird asked her questions and we answered as best we could. Throughout she took the time to reassure us that we were doing well. She assured us that we had done everything we could and that the Bean was lucky to have us. Now this very well may have been just a good bed side manner but I’ll take the praise anyway. Thank you Dr Baird that meant a lot.

The jury deliberates

So after the Bean had finished up with the other two, they and Dr Baird went off for a conflab for 15 minutes or so and the Bean came in with use and played with the toys. I can’t remember what me and my wife talked about but I recall what was in my head was a worry that we would not get a diagnosis. I managed to half convince myself that Bean was not acting autistic enough today and we would be told there was nothing up with him. This filled me with fear because then what would we do? We knew there was something very different about our little boy and if it was not autism then we would kind of be back at square one. I guess we had actually emotionally invested in getting a positive diagnosis and so now it was crunch time my nerves began to fray.

When they all returned I could feel my heart rate quicken. It was the same kind of feeling when you are opening your exam results. Thankfully they didn’t piss around or string it out. They knew damned well we were nervous as hell so very quickly the words were spoken “Your son shows clearly behaviour consistent with a diagnosis of autism”. First I felt a wave of relief. That might sound odd but it was definitely the first emotion I felt. And then it hit me properly. My son has autism, no if’s not buts no maybes here was probably the UK’s best diagnostician in autism telling me that this was the case. My son is autistic. And despite the initial relief, despite already knowing that this was true for months before hand those words still hurt like a bastard.

It was something about a Professional saying it that made it completely, harshly and unequivocally real. My son is autistic, he is an autistic person and he always will be from now and forever. We knew enough to know that this condition would be hard on him and us we had already shed many tears of worry over the future but it had all seemed a bit surreal up until now, now this was no longer a “possible thing”, not a “might have autism” not even a “looks like he has autism” it was completely real. We have an autistic child.

The bean and the egg yolk

Dr Baird went on the elaborate a bit about the Beans level of autism as far as they could tell. She was careful to caveat most of what she said by informing us that he was still very young and there is no set pattern for how autism will develop. So things could change and his potential was yet unknown. But as far as she could tell at this stage he had “significant” impairment in social communication and clearly significant language delay. She described autism as a fried egg. With Asperger’s and other milder forms of ASD as the white of egg with classic autism as the yolk. Bean was in the yolk she said.

So there went all our hopes for a mild, “he’ll be fine with a bit of help” type diagnosis. Significant autism. I think it was at this stage that I felt a tear rolling down my cheek and my wife was also teary eyed. It was not the tragic, woe is me, anguished pain type tears. Just a gently out letting of emotions in liquid form. It hit us both harder than we expected especially the last sliver of hope being drowned in a metaphorical egg yolk.  As I said it hurt like a bastard.

The aftermath

So after a few words of wisdom from Dr Baird about things we could try we said our good byes and trotted off. We met my in laws in the canteen down stairs. Ordered some food in a daze. Sat down and made some phone calls. I think I told my mum first then I phoned my father. Telling my mother I was quite matter of fact and composed but for some reason I broke down telling my dad. I don’t know why but this had happened couple of times before. There is something about telling my own father about my son that really tugs at my heart strings. I can talk to anyone else and remain fully composed but sometimes with my father something happens inside and the emotion just wells up. So I had a bit of cry, pulled myself together and that was that. That was D day. We made our way back to the car and drove home to begin our lives as an official autism family.

Conclusions

So what is the point of the above post? Well firstly it is hopefully just an interesting thing to read. It is one of those quite intense human experiences that no one expects to go through. So hopefully just as a tale of human interest it stands on its own merits as worth reading but further to this I wanted to share a positive message about diagnosis days. Despite the strong emotions it was a positive experience. We have met many other parents who have been through this process and it is with great sadness that I have found that not all diagnosis experiences go so well.

We have heard some real horror stories about shitty doctors, dismissive staff and then a wishy washy vague half diagnosis at the end. This is incredibly frustrating for the families involved. We were lucky, very lucky. We had a good GP who knew the system and wanted to help. We also, by chance, had some good advice on who to go and see. To our own credit we also pushed quite hard to get this outcome as well.

So I guess for those reading this that might be starting this process know that it can be a positive experience and you deserve for it to be so. Don’t take second best, don’t be fobbed off with vagueness, delays or shitty behaviour. It will always be a hard day, nothing can sugar coat hearing that one’s child has a lifelong “condition” that will almost certainly increase the challenges they face in life. But it need not be a completely crappy experience in fact it should not be. It should be the end of one journey and the start of another. It is then end of “does my child have autism journey?” and the beginning of the “how do we reach my child’s full potential journey”. This transition, although emotionally charged, should ultimately be a positive one. Don’t settle for second best and really don’t put up with rudeness and other poor behaviour, you and your child deserve more.

Shipwrecked in an alien culture

Shipwrecked in an alien culture

(This will make sense by the end I promise…)

I’d like you to imagine the following. You are ship wrecked on a distant island with no hope of rescue. As you begin to explore you find that the island is home to a rich and vibrant civilisation, thus far completely unknown to the rest of the world. The natives are not hostile, but somewhat curious about you and they take you in and care for you.

Language barriers are just the start…

Soon you realise their spoken language is strangely similar to English. Quickly you begin to learn the words for things and soon you are able to make basic requests and understand them in return. But, as you begin to learn their language you start to notice some differences in this native population. They do not smile when they are happy or frown when they are angry. Indeed their words do not seem to correlate with the emotions they convey. This is really odd and disconcerting. You find it really hard to work out when they are angry or sad.

One day you are confronted by an extraordinarily aggressive man bursting into your room. He is shouting at you angrily, frowning and gesticulating wildly. You cower in fear for your life, unsure what you have done to cause such offense. The man leaves looking puzzled. Later it is explained to you that he was simply telling you that they found some of your belongings washed up on the shore. The others then ask why YOU got so angry with him? Baffled you explain that you did not. You tell them you thought HE was angry and you got scared. They look puzzled and ask: “why then did you turn away like that showing your aggression?”

Confused, you think about it and come to the conclusion that in this culture body language and physical expressions of various emotions are different. The man’s angry voice was actually excitement at his discovery of something from your ship. Your cowering away in fear was, in their culture, a demonstration of anger. As you observe further you see that these difference are utterly pervasive. None of the facial expressions, body language or tones of voice match what they “should”. This culture has, it seems, evolved a completely different set of nonverbal communication.

More problems of communication

Over time you do learn the spoken language fluently but this leads to other issues. You rapidly find that in this culture the language is highly nuanced, laden with metaphor and double meanings. Knowing the vocabulary and correct sentence structure is simply the beginning of effective communication. For example even seemingly tiny changes in inflection can drastically change the meaning of a whole sentence. Furthermore the highly prevalent use of metaphor, idioms and turns of phrase draws heavily upon a long literary and cultural history stretching back millenia. It seems an impossible task to learn this history, but equally it seems it is vital in order to communicate effectively.

More worryingly still, the language seems to be somewhat “sacred”. Mistakes in pronunciation and misunderstanding the meaning of the metaphors so commonly used are not tolerated. Indeed you find yourself mocked and ridiculed for such errors. There seems to be little sympathy for the fact that you are not a native speaker and have no knowledge of their cultural history. You are expected to speak perfectly. When you don’t the natives either get angry (you have learned from bitter experience to read their body language for anger by now), upset, or they laugh at you with cruelty.

This is deeply confusing because they do not seem like a cruel people at all. Their society is peaceful with equality for the sexes and sexual orientations, their laws are fair and just, and those with physical disabilities are cared for with kindness and sympathy. So, you wonder, how can they not make some allowances for you as a foreign speaker of their tongue? Surely they must know that you don’t mean to screw up? Surely they must make some reasonable allowances? But it seems they will not.

Matters get even worse when you begin to mingle further within their culture. You rapidly find that their society also has a myriad of complex social rules and etiquettes, completely different to anything you know. These rules govern things like; who can speak when, what clothes should be worn in what situations, what body language is appropriate, when one should laugh and when not. These rules and rituals are as complex as those governing high society in Edwardian England but, of course, completely different and utterly unknown to you. Every time you think you have mastered a new rule you seem to blunder and learn that there are many exceptions to each of them. You try desperately to understand but the social rules of this culture are layered, complex and seem to have many caveats and exceptions which appear to be deliberately put in place as a cruelty to the uninitiated.

Intolerable intolerance

What is worse is that the society is as equally intolerant of social faux pas as it is of mispronunciations. You are laughed at, shouted at and even physically assaulted when you inevitably make mistakes. There is no recognition or understanding that these complex rules are not natural to you. This problem is compounded by the fact that no one seems able to teach you the rules either. Those that have tried don’t seem to be able to explain things very well. The rules are so instinctive to them, so deeply embed in their psyche that they do not even have to think about them. Their understanding is effortless without conscious thought and so is actually hard for them to explain in words.

So to recap: your problems are thus:

  • It is very hard to work out what people are feeling because their facial expressions and tones of voice are “mixed up”.
  • It is very hard to understand the complex rules of social interaction and no one seems able or willing to teach you.
  • This leads to many unintentional blunders on your part which are met with hostile reactions.
  • There is no sympathy for the fact that you are new and still learning.

This means you find interacting with others incredibly stressful. You are in constant fear of offending or upsetting someone. Not only that, you often don’t know if they are offended or upset because you find it hard to understand what they are feeling. so you never can be certain of whether a conversation went well or not. This doubt nags at you before, during and after every conversation. The effort required to focus on social interactions leaves you exhausted after even brief conversations.

Imagine how stressful this existence would be? How would you cope? Would you be able to hold down a job in this new culture? Would you be able to integrate at all? Might you run fowl of their criminal justice system simply by error? Might you thus conclude that it would be better to stick to your own company? To minimise your contact with others? Over time how might this loneliness affect your mental health? Would depression and anxiety follow fairly quickly?

This is autism

If you have imagined this vividly you have just imagined a scenario similar to that faced by autistic people in our society today. We neurotypicals are this “alien culture” to our autistic peers and are often just as cruel and unforgiving as the imaginary society outlined above. The good news is that, generally, it is an unintentional cruelty born of ignorance. The imaginary society above was full of good people, liberal and open minded in many ways, but they could not comprehend that anyone would not understand the rules of language and society. As these rules were universal, everyone in that society just understood them instinctively. It was inconceivable that anyone would not get these rules, so any transgressions were just deemed rudeness. This, I am afraid to say, is how the neurotypical world often treats autistic people. And it is just as cruel and damaging as the imaginary situation above.

In order to build a better understanding of what it might be like to be autistic in a neurotypical world I invite you to ponder the above tale and really try to imagine what it might be like. Imagine how you might feel. If you can draw on any similar situations from real life, perhaps embarrassing situations in foreign countries, then that will make the imagined journey all the more real. It is probably impossible for us NT’s to imagine what it is like to actually be autistic but the story above is perhaps a half way step, something that we NT’s could envisage and relate to. My hope is that this could build better empathy and understanding.

Where did this come from?

The inspiration for this post came from several conversations I have had on line with adults with autism. It struck me that I have only really met small kids with autism and their parents. Soon though, the Bean will be a teenager and then adult with autism. I wanted to find out more about how that might look. So I dove into the interweb forums, chat rooms and youtube looking for answers. My conclusion was:

“Most of the problems faced by most autistic people stem from the lack of awareness and understanding by neurotypicals.”

So autism is not the problem. We are. That’s a sobering thought. But the good news is that no one really wants to be like that. No one wants to be the ignorant yank laughing at the foreign tourist who mispronounces a word or commits a social faux pas. When we act like this towards autistic people it is not through malice but simply through not understanding there was a communication problem in the first place. I hope this post does something to raise awareness. Looking back to my pre-autism days I know I have made these errors myself. All of us will have interacted with someone on the spectrum, whether we know it or not. Perhaps that rude person was not rude at all? Maybe that irritating man you had to deal with was not being deliberately annoying at all? Maybe that “bratty” kid was not a brat? Is it perhaps possible that they were all shipwrecked foreigners in an alien culture?

In the next post I’ll address some of the specifics of the things autistic people struggle with and how we can meet them half way…..

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!

The tragedy of the absent father

The tragedy of the absent father

This is not a post about autism per se but rather some observations and thoughts on a phenomena I have observed since becoming involved in the world of parenting kids with special needs.

Over the last couple of years my wife and I have met many other parents of kids with special needs. These people have formed a vital part of our support group and it is absolutely true that no one else “gets it” like other parents in a similar boat. A special bond of understanding exists between us and our new group of friends. It’s a group that none of us wanted to ever belong to but now that we have had membership thrust upon us the group is of immense value to all. They are affectionately known as the “the autism massive” * by me and my wife.

*Note the “autism massive” includes parents of kids that have issues other than autism so it would more accurately be the “special needs massive” but the Bean is autistic so that’s our name for this gang.

In addition to the “autism massive proper” I have had many discussions with other parents online. Again this “cyber autism massive” has been an invaluable source of comfort, support and advice. With anything from swapping tips about coping strategies to just venting about various frustrations the denizens of the various interweb sites I frequent have been a huge source of strength.

Where are all the dads?

During all these interactions with many different people I have noticed something strange about both the massive proper and the massive cyber. Most of people I talk to are women. When I say most I don’t mean 60% or 70% I’d probably put it more like 90%. So my question is where are the dads? Clearly 50% of the parents in our situation are male so where are they all? I have no issue talking to women but the dads are conspicuously absent from these groups and this deserves an explanation.

I have explored this topic with some of the cyber massive at various times and some interesting theories have been suggested. One was that men don’t like to talk about such things, that we are somehow emotionally retarded. Well that might well be true to an extent but I don’t think it really accounts for the whole discrepancy of numbers. Certainly my experiences on line in other topics of discussion have been the exact opposite with a men making up most of the population.

Someone else suggested that men have big egos and so are more likely to feel ashamed of having “disabled” kids and so are often in denial of the facts. Well I had to bat that one down right away cos for every egotistical male like this I’ll give you a precious mother who can see no wrong her little darling. I’m sure both stereotypes exist with some frequency but I would suggest they cancel each other out resulting in no particular propensity towards such delusions along gender lines.

All that being said I have to admit that fathers are genuinely not as involved in “autism world” as the mothers are. I have indeed heard many tales of woe from frustrated mothers whose other halves are, it seems, in denial of the facts about their kids. But I refuse to believe that this is down to the male ego. So what goes on?

The patriarchy strikes again!

Well I think partly the phenomena can be explained by good old sexism and the hangover from our patriarchal past. It is still very much the case that child rearing is “woman’s work” in our society. Whilst we have certainly made much progress in terms of equal opportunities for women we only just started to dent the cultural norm that it is the women that look after the babies and small kids. Even in my circle of ultra-liberal educated friends it is still the case that the vast majority of the child caring is performed by the females.

We see this unfortunate fact supported and perpetuated by the law. Firstly there is a massive inequality in parental leave (women get a year men get 2 weeks). Secondly there are unequal child custody laws. Women tend to get the kids in the event of split up with 92% of single parents being women. All this underpins the social norm that child care is “woman’s work”.

Note: The “inequality” in child custody cases may well be because women tend to the majority of the child care before any marriage breakdown and hence it is in the interest of the child to stay with the primary carer. Nonetheless this statistic shows just how skewed our society is when it comes to child care responsibility.

As a side note this inequality of child rearing is, in my opinion, the most important feminist issue to address in the 21st century (well for the first world countries anyway, I guess getting the vote and being allowed to drive is somewhat more of a pressing issue in some parts of the world!). Until we get equal child care sharing women will always be paid less than men because they are simply more risky prospects to an employer. All other things being equal do you promote a 30 something man or a 30 something woman to a senior position knowing damned well that statistically the women is far more likely to take significant time off to look after kids? Until men are doing 50% of the child care employers will always penalise female employee s, not through sexism per se, but through cold hard economics! Until this is addressed there will never be equal pay or promotion opportunities for women…. but I digress.

So as I was saying, part of the phenomena of the low turnout for my sex in the autism community is that many men are just not as involved with their kids as their spouses. This then means that they are less likely to accept that something is “wrong” and perhaps live in an extended state of denial for longer. Certainly I had my own head up my arse with regards to the Bean’s autism for a while (see this post for more details). For about 6 months or so my wife was telling me that there was something up with our son but I refused to believe it. This was primarily because it was she that was with him day in day out and so she could see what I could not, namely that he was very different to other kids. However I got on the same page as my wife after a few months and I think most dads do so this eventually. So the extended denial period can’t really explain the whole absence of men from the discussion. The problem is bigger than simply a delay in getting on board with the situation.

Meetings, meetings and more meetings

One of the things about having a kid with special needs is that the situation precipitates an awful lot of meetings. Over the last couple of years I have lost count of the number of times we have met with doctors, speech therapists, occupational therapists, hearing tests people, paediatricians, health visitors and of course many people from the early years special educational needs team. There is a whole team of professional working with Bean and at the last big powwow there were 8 of us in the room for 2 hours discussing Bean, and two people could not make it!

Now these countless meetings present a very real problem for working dads. As discussed above our misogynistic society still dictates that women do the bulk of the child care and a direct consequence of this is that the men still do the bulk of the bread winning. Countless meetings do not fit well with ones duties as a bread winner particularly in a traditional office environment.  If one has an understanding boss then may be the first 5 or 6 mornings off be given with good grace but by the time of the 10th half day off patience will be wearing thin and trust me by the 10th meeting we are not even getting started yet!

So the bread winner of the family is faced with juggling his desire to attend meetings about his child and with his duties to actually bring home the bacon. Often the bacon wins out and this means the father misses out on meetings and so becomes less and less informed on his child’s situation.

A further complication to this it has been my experience that almost every professional involved with Bean has been female. Now as I said I have no problem talking to women but there are some potential communication issues between the sexes. There is a natural bond between mothers and many of the female professionals involved with Bean are mothers themselves so I think perhaps this means my wife can talk more easily to them than I. It would be really nice to have a chat with a professional who is also a fellow father.

So what are the consequences of all this?

The above describes a situation where a very vicious circle can be set in motion. The father is forced to juggle his work commitments with “being involved”, he misses several meetings about his kid, he is thus less aware and informed. This in turn leads to the mother making most of the decisions which alienates the father more and leaves the mother feeling frustrated and unsupported.

As a consequence, my discussions with the mothers of the cyber autism massive have constantly revealed extreme frustrations at their partners. The mother’s feelings of isolation are a very common theme. In many cases the cause of this is deemed to be some character flaw in the father. It is all too easy to attribute blame and again this helps fuel the cycle of isolation. All this has a huge impact on the relationship between the parents just at the time when they most need to be strong and united.

So what’s the answer?

Well I can only say what helped me and my wife. So for what it’s worth, and at the risk of sounding clichéd, I would suggest that couples in this situation keep talking. Whilst it may be very frustrating for the mothers who feel like they are unsupported by their other halves remember it is probably just a isolating and bewildering for the man.

When we were not communicating well and I still had my head up my arse about the Bean’s autism my wife was feeling the following.

  • He does not care about our kid enough to be involved
  • He does not care enough about me to support me
  • I am sick with worry about our son
  • I feel alone just when I need him most

At the same time I was feeling

  • She does not understand I’m trying to keep it together and keep my job so I can support my family.
  • She does not seem to understand the pressure this whole situation puts me under.
  • I am sick with worry about our son
  • I feel alone just when I need her most

The important thing to note is that the last two points are the same for us both.  Whilst the precise feelings and thoughts will vary from couple to couple I am sure that the last two points will be pretty universal. Both parents will be worried and both will be feeling alone. The joint concern for the child is, of course, the key to getting the communication going and once this starts the feelings of isolation will lessen. But it takes one person to put aside their feelings of resentment and actually listen to the other nonjudgmentally. I can’t emphasise the word nonjudgmentally enough. It is the judgement and blame that fuels the vicious circle. One person, and it does not really matter which, needs to be take the bold step of putting aside blame and their own feelings of frustration and really listening to their partner. Sympathise, empathise and let them know you understand and in most relationships this will be reciprocated – you need to give to get as the saying goes. Once this dialogue starts you can have an adult to adult conversation and really start getting to grips with the situation as a team. Remember no parent of a kid with autism has the luxury of wallowing in self-pity and heaping blame on their partner, your kid needs both of you.