About this blog

This is a blog about my thoughts and experiences as the father of an autistic child. I guess the reason for writing and publishing this stuff on the interweb is that I feel a duty to try and explain a bit about autism and how it affects the people that have it and their families. I do not want this to be a moan fest about how hard our lives are and how terrible autism is, although inevitably some of the difficulties we encounter will be talked about. Rather I would like to focus on how others can help autistic people they may encounter. Understanding more about the condition is absolutely vital to helping autistic people like my son. There is still much ignorance about the condition If other people like what I write then that’s wonderful but getting a big number of views and followers isn’t really what this is about .

About our family

Me and my wife have two children. I will refer to our kids by their nick names to preserve some anonymity. Our eldest “Bean” was diagnosed with autism last summer he was 4 years old in Feb 2014 and our youngest “Zoo” is 20 months old at the time of posting.

About the nick names

Bean was called bean since the nurse at our first scan told us he was about the size of a bean. “Zoo” was called babyzoo as a nickname when he was born and the it got shortened to just Zoo.

Emotional barriers

This post is about my journey from feeling fearful and hostile about placing my child in a special school to completely embracing special education.

For the first year of school the Bean did a split placement between a local mainstream primary and a local special school. In his second year, we took the decision to take him out of mainstream entirely. The Bean is flourishing now he is full time at special school and we know that this is the correct place for him. To begin with, however, I experienced some very negative feelings about special education and was strongly hoping that he could go to mainstream.

Firstly I want to say I don’t believe there is anything wrong with having an initially hostile reaction to the prospects of putting ones child in special education. Scepticism is an entirely natural reaction. There are strong emotions involved in this decision and wherever strong feelings are present reasoning can be impaired. I think, with hindsight, I probably pushed in the wrong direction to begin with and it took a while to “see the light”. The purpose of the post below is to share my own journey and hopefully help others struggling with the same negative feelings. I’m not saying that the split placement was a ghastly mistake or anything but it was, perhaps, a decision based more on my own emotional needs rather than what was best for the Bean.

To mainstream or not?

Note: I say MY prejudices because this was probably, if I am honest, more to do with me than my wife who was, from the outset, far more comfortable with special education.

Barriers of emotion

I’m going to be brutally honest about how I felt throughout this journey. Some of the views of my past self I would probably find offensive now, and certainly foolish, but I think it’s important to get them out there for other parents who may be going through similar deliberations to read. So if anyone reading this feels a prickle of offense at my descriptions of what I used to think, please stop and reflect before hating on me. Remember, I’m at a good place now with regards to how I see our special kids. Also remember that most parents, unless they are fucking saints, go through this process.

We are all flawed beings. We all have prejudices about those that are different. This very much includes the prejudice against the disabled. I don’t want to self-flagellate too much, but the simple truth of the matter is that the vast majority of people do view conditions like autism as something bad, or worse, even shameful.  On the flip side we have all been conditioned by decades of political correctness not admit these “sinful” feelings. If we are honest, they are still there in most of us. I’m not saying that people in general are bigoted or hostile to the disabled but again, if we are really honest with ourselves, beneath the veneer of politically correct words, there is still a feeling of uncomfortableness in many of us around those with physical or mental disabilities.

When something like autism happens to your child these prejudices can cause problems. On the one hand we know that we are not “supposed” to find these disabilities disturbing, especially in our nearest and dearest. Nonetheless, these feelings do occur despite how well conditioned we are to find them “sinful”. Thankfully most people will quickly get over these prejudices when it comes to their own children. Parental love kicks those icky feelings into touch pretty swiftly, but this is not quite the same as overcoming prejudice completely.

Our own children are, initially at least, seen as the exception rather than the rule. They are akin to the black mate of the racist who is “alright for a darkie”. For the children of others, and the wider disabled community, our innate prejudices and fears are harder to overcome. But because we can’t talk about these feelings honestly, for fear of being seen as some kind of bigoted monster, they fester. On the surface we are all “positive about autism” and we say the right words but deep down we may not believe the words we are saying.

Internal conflicts

This dynamic sets up an internal conflict within many parents. On the one hand they love and accept their own child, but on the other hand they find kids like them a bit disturbing. Unable to talk about such feelings and work through them, we end up holding two mutually incompatible ideas in our heads. We know that our own child is like those other kids we find disturbing, but we accept our own child completely so another part of our mind tells us that they can’t REALLY be like those others. Holding two contradictory ideas at the same time creates the phenomena of cognitive dissonance. This can be psychologically distressing and is the root cause of much of the world’s irrationality.

The human mind likes consistency and when it is forced to hold two inconsistent beliefs our brains will try their best to work out the paradox. One way in which this conflict is resolved is denial. In this situation we tend to engage in some mental gymnastics to come up with reasons as to why our kids are not like the other special kids, even though we know they are really. This is why many parents, I think, tend towards artificially favouring a mainstream educational setting.

Mainstreaming is a way to resolve the internal conflict. If their child can do mainstream then they don’t have to be part of that “special” world and so avoid the things that make them feel uncomfortable. Any exposure to special schools and other special kids is a sharp reminder of the internal conflict and so is avoided. Of course this motivation (to avoid thinking about the conflict within) can never be expressed openly because that’s just not politically correct. This is where the self-deception starts. There is a danger that a parent in such turmoil will start to falsely justify why their child should be in main stream, why their child is not that “special”.

How do I know this is true? Because this was my process. I think, If I’m really honest, logically I knew the Bean should go to special school full time from the start, but I resisted this. On the surface I presented some very logical arguments about how mainstream would be good for socialising and accessing peer to peer learning. These and other seemingly sound arguments meant mainstream was at least worth a shot. But what I was secretly hoping was that the Bean would, at some stage, be able to move over to mainstream and away from those other kids who were not like him really. I was hedging my bets, but the bet was made on faulty information. What I was really doing was looking for a way out from my own prejudices, my own internal conflict.

So did we fuck up in that first year?

Well not really. The Bean is pretty autistic but not so different that mainstream was a completely silly idea. With hindsight it was a bit of a waste of a year and he probably would have done better if he had gone straight to special school. But given the information we had at the time, the decision was not totally and irrationally based on my prejudices. There was a logic to the decision and this was not entirely a false logic trying to justify an internal conflict.

Thankfully, I became acclimatised to special school over that year, managed to get over myself and got on board with the advantages of Special Ed. But split placements are a rarity. Most parents in our situation don’t have that option. It is one or the other. I can see that, without exposure to special schools, parents may let their natural aversions continue to cloud their judgement and push for mainstream when it is perhaps not the best place for their child. And it is to these parents that I aim this post.

I do not want to tell you what to do, but I do want you to understand that I get it, I have felt what you feel about Special Ed. I know that it disturbs you. I know that you can’t say that to anyone. I know you feel ashamed for feeling that. I know you think it will feel like you are giving up on your kid if you send them that place. I know you have read the inspiration porn about amazing mums who fight for their kids to go to mainstream and by jove those kids proved all the experts wrong and went on to get a joint honour degree in being brilliant and clever from Oxbridge. I know you hope that your kid will be like the kids in those stories. I know you tell yourself that your kid is not like those others at special school, not really. But I know that, deep down, you know they are and that thought nags at you and irritates you. It prickles your intellect like an angry verruca. You try to ignore it but you can’t quite ever put it aside. I know all this because I did all of the above myself. But, we were incredibly lucky to have been able to do a split placement and to be able to contrast the two environments side by side in real time. This luck meant the evolution of my thinking has happened very fast. In the space of a year I went from being almost entirely negative about special school to now, where the thought of mainstreaming the Bean brings me out in a cold sweat.

So am I, or are you, a horrible person?

Well in short, no. We are just human beings with the same prejudices everyone has. Our move towards a more tolerant culture is undoubtably a good thing, but the phenomena of “being PC” does mean we often find it hard to acknowledge our prejudices. As I said above, we know what we are “supposed” to think and say and when this is in conflict with what we actually feel it gets suppressed. Many are very quick to convict their fellow humans of “wrong think” and this is particularly true in liberal and left leaning circles like my own peer group. “Virtue signalling” where we profess how “right on” and down with the disabled kids or other minorities we are is rife on social media. As, indeed, is public shaming. Those who transgress and commit wrong think end up being labelled as a bigot or some kind of “ist” or “phobe”.  So, in this climate, when these feelings arise, we hide them for fear of a PC witch hunt and this suppression can be dangerous.

The good news is that, over time, one learns to get over ones prejudices. Where I am now on this journey is very different to where I was when Bean was starting school. Again I will emphasise that this was partly due to our incredible luck in being able to be eased into the world of special needs education via the split placement in the Beans first year at school. During this year I embraced the wonderful weirdness of not just Bean, but all his peers. These kids no longer disturb me as they might have done a year or two ago. It’s often said that being a special needs parent teaches you much and this is perhaps the biggest lesson. To truly accept these kids with their various oddities is to grow as a person. As I said, it’s simple to do it with your own but takes a bit more work with other people’s children.

It’s very easy to say the correct words. To say; “Oh I accept all kids with disabilities” but to truly mean it is another thing entirely. And that is what the Bean’s time at special school has taught me. I no longer see “spazy” kids. I no longer find it disturbing.  I just see the Bean’s friends, his peers, his neurotribe, the kids like him. The kids like the little boy I love more than anything in the world. He is like them and they are like him and that’s cool with me. But getting here was a tough journey with much soul searching. This is a journey that can only start if one admits to oneself those negative feelings in the first place. A failure to recognise one’s own prejudices will doom one to a prolonged period of denial. So I encourage all to take that first step. And I hope that maybe reading this will be a jolt back to reality for some.

If, as a parent, you can get to this genuine acceptance of the different then not only have you done something wonderful for your own child, you have just made yourself a better person. This is what our special kids teach us over and above neurotypical children. If one can truly accept these children with all their quirks, then things like race, sexuality and gender that so often divide us are shown as the trivial and superficial differences that they are. I’m not saying this because I want to virtual signal about how right on I am. I say this merely as an observation of how I see my peer group of special parenting families. A more accepting, loving and caring group you will not find. Now, it IS possible that we have just been lucky and there just happened to be a rich seam of saintly people in the local area who also just happened to have kids with special needs, but I don’t think we are that lucky. Instead I think our peer group consists of normal people with all the flaws and graces one finds in any population, but these normal families have all been through an extraordinary experience and it is this experience that teaches them the virtues displayed so readily. Going through this cannot but change a person for the better. Autism parenting may break our minds and bodies but I think our souls are almost universally strengthened and improved.

Embracing the weirdness    

­­­If you are a parent who is going through that internal conflict, don’t beat yourself up about it. You are a flawed human being just like me, just like all of us. If this is your first immersion into the world of special needs then, unless you are some kind of fucking saint, you will find it unsettling. We humans have a natural aversion of the different and we fear the unknown. This is the root of all our prejudices, racism, homophobia, xenophobia and our disquiet for the mentally and physically disabled. But, as with all the other “isms” and “obias” that plague our society, understanding and familiarity can dispel those irrational fears. If you take the plunge and immerse yourselves in special world, talk it through with others who will not judge you, you will find a way to square the peg and resolve the paradox. It’s not a question of working out that your kid is like those others, because deep down you know that already. Instead it is a question of accepting that those kids, like yours, are worthy of love and respect every bit as much as your own child is.

Note: I want to make absolutely clear that main stream education is the right choice for many autistic kids. I do not want anyone to think that I am advocating special ed for all autistic people. Neither would I ever judge any parent who made the choice to main stream. You know your kids better than anyone else and it is your choice. But hopefully the above post may help some parents to stop and think things through properly. If a strong negative emotion is getting in the way of making the wrong decision it might be a good idea to talk it through in a place where you will not be judged. Perhaps this post will be a catalyst for such conversations.

Line art

The phenomena of autistic kids lining stuff up is well known. So much so, that it has almost become a stereotype. But little appreciation is given to the effort that goes into a good line. Bean will spend hours arranging his toys, and now the simple lines of his “youth” have evolved into large, complex formations of toy animals (and sometimes toy people). These are not just random clusters of objects. There is order, symmetry, aesthetics and creativity. In short, there is art.

To many neurotypical people, “autistic lining up” may seem a pointless and repetitive activity. Parents will often discourage line building in favour of more ‘useful’ pursuits. I beg to differ. The Bean loves a good line. The effort he puts into his creations is helping him learn and develop in the same way more conventional art forms do for neurotypical kids. Stopping the Bean making his lines would be akin to a parent of a normal child banning drawing in their household. We would rightly frown on any such parental fatwas against creativity as we should with a discouraging of line making.

It has often been said that autistic people lack imagination and creativity. To those in the know this is obviously complete bollocks. But, as with most pervasive misconceptions, there is a reason it exists. In my opinion this actually stems from a lack of imagination in neurotypical people. We tend think in conventional ways and only see creativity where we are conditioned to do so.  Drawings and painting are art, but a line of toys is just a line of toys; an annoyance, a mess, a waste of time (and definitely not art). It is not where art should be and so we simply don’t see it. We filter out the beauty, to our loss.

Perhaps this is how the Bean feels about drawing or painting, which is why he does not draw or paint! To him maybe it’s just a pointless series of lines or splodges on paper, as vapid and devoid of meaning as line of toys is to the untrained neurotypcial mind. Who knows? The mind of a Bean is very mysterious. But what I do know is that if we can get over our prejudices about what formats of art are “acceptable”, then we too can learn to appreciate a good autistic line. Once you do then you will see a creative mind at work as rich in imagination as any neurotypcial child. Trust me, there is more to a good line than you think. So I invite you to peruse some of the work we have managed to capture on camera.

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The Bean’s temporary installation at “Toys Are Us”
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A pan room line consisting mostly of animals. Please note the symmetries and general aesthetics
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A circular arrangement.  Note the Bean shaped hole in the middle.
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The master line maker at work. Note the cheeky bit of arse crack on display by our artist!
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The Bean busy at work in his dragon hat.  The iPad is on as he is also watching the credits of the film “Brother Bear”, singing along to the Phil Collins sound track. A multi-talented, multi tasking little Bean indeed!
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The finishing touches being placed on a work top installation

The cruelty of strangers

The cruelty of strangers

That feeling of paranoia

Any autism parent will tell you about the feeling of paranoia when out in public with their kids. The problem we all face is that autistic behaviour in kids often looks almost identical to naughty behaviour. So when our little treasures are being their autistic selves we feel the sting of the disapproving glares. Now all parents can relate to this feeling I’m sure. All kids act up in public from time to time, showing their parents up and I think most parents have seen those scathing looks from Mr and Mrs Joe public. Well this is kind of standard fare for every trip into the “real world” for an autism family.

So autism parents develop a pretty thick skin pretty fast. Rhino skin is one of the first special powers we tend to develop along with an extreme reserve of patience. These skills are essential to one’s mental survival along with booze and caffeine. Nevertheless, in our darker moments we worry about what strangers might think, how they might judge us as bad or weak parents. We fantasise about what we would say if we were to confront these judgemental anonymous antagonists of our paranoid imaginings. I have spent many a day dream rehearsing in my head the dressing down I would give to some random who dared to voice their criticism of me. I imagine how I would explain the autism parenting reality to them in such a way as to make them feel so wretchedly guilty for their ignorant assumptions that they would visibly wither and slither off under a rock, sobbing with heart felt grief for their own stupidity. I’m sure many autism parents have had similar fantasies of a righteously justified berating of some hapless member of Joe Public.

It is worth noting that these fantasies of giving someone a really good talking to are a self-indulgence that most people allow themselves. We all have internal dialogues from time to time about how we are really going tell someone what for. It’s perfectly natural but, as we shall see below, sometimes these little bits of narcissistic thought can spill out into reality with bad consequences. Sometimes, if indulged too much, we humans can believe our own bullshit and the fantasy becomes a reality in our own minds. This is the root cause of what I am really going to discuss below, but we will get to that in a bit.

For me these fantasies have remained just that, fantasies. Whilst I’m sure many of Joe public who have observed the Bean’s more, how shall we say, “energetic” displays of autistic behaviour have indeed judged me and my wife as being poor parents, none have ever said anything to our faces. Sure we have seen the looks but it’s never really come to a verbal confrontation were I have had to use my well-rehearsed arsenal of cutting diatribes putting my detractor firmly in their place.

On those rare occasions when I have felt the need to explain the Bean’s behaviour to a member of the public, all I have seen is sympathy and understanding. I have seen the look of disapproval on faces melt away to become one of concern and compassion. Far from the angry confrontations of my self-righteous fantasies all I have ever seen really is a willingness to help. This warms my heart greatly and restores my faith in humanity.

Indeed this compassion is mirrored by pretty much everyone I have dealt with. From shopkeepers, to teachers, to waiters, to swimming pool attendants. As soon as you mention the A word all seems to be forgiven and one no longer feels judged. So whilst there is certainly much work to do about autism awareness there does seem to be enough awareness that most people can empathise enough to know that it isn’t the fault of the parent and that seemingly naughty behaviour might not actually be any damming indictment of parental prowess.

So why the title of this post?

But, I hear you say, the title of this post is about the cruelty of strangers, so what gives? Well, there has been one exception to this almost universal dairy load of the milk of human kindness. Or, rather, there have been several exceptions but from one category of people. These people have treated me and other parents with cruelty and a total lack of compassion. I have been called; a bigot, evil, vile and pretty much every name under the sun. The people I am referring to are the Social Justice Warriors of the internet.

Now for those of you unfamiliar with the term Social Justice Warrior (SJW) allow me to explain. An SJW is someone who fights for social justice by blogging, commenting and debating on-line. They take up many causes; feminism, anti-racism, gay rights, disabled rights and of course autism rights. This may sound like a good thing. What’s not to like about all these “rights” movements? I would agree entirely these are all worthy movements but where the SJW sets themselves apart from normal decent activists in this area is the way they conduct themselves. And, more importantly, what their actions reveal about their true motivations.

Despite what they say, the SJW isn’t really in the business of trying to effect real change for whatever minority they purport to be supporting. All an SJW is really interested in is feeling morally superior to their fellow humans. What they have done is spent far too much time indulging in the narcissistic, “revenge” fantasies I discussed above. They have started to believe their own bullshit and now see oppression and bigotry everywhere they look. Indulging and acting out those fantasies becomes addictive particularly when it can be done so by sitting safely behind an internet connection without any risk of getting punched in the face. The anonymity of the internet makes everyone very brave it seems.

Offense is never given its always taken and boy do they know how to take

What we see from SJW’s is an uncanny ability to take offense at the slightest thing. The mental gymnastics that go on in working out just how they can be offended by some harmless looking statement would shame any overly prickly Muslim fundamentalist. The hissy fit of offense taken at drawings of Mohammed are nothing compared to the self-righteous frenzy SJW’s work themselves up into over the most innocuous of things. Anything can and is deemed offensive and they really don’t give a fuck whose feelings they trample over when they express their faux moral outrage.

Throughout my whole autism journey the only time I have truly been made to feel like shit by my fellow humans is when engaging with these fuckwits. They tend to lurk on various autism facebook groups and forums, eagerly waiting for someone to come along who says something that they can be offended about. Needless to say, the skilled amongst them can work out a way to be offended by pretty much anything so there is no shortage of meat for the grinder.  Once they have figured out how they can take umbrage they attack, often on mass. And it gets vicious believe me.

Some of them are autistic themselves (or at least they claim to be autistic) and use that fact as a shield to deflect any criticism. They say things like; “You need to shut the fuck up and listen to us autistic people” or “you need to check your ableist white male privilege and shut up”. Anyone who disagrees with anything they say is being “ableist” or “bigoted” and trust me they are well versed in the slippery arts of mental contortionism to justify any such charges with 101 nonsensical arguments. If a fellow autistic disagrees with them then, of course, they have “internalised ableism”. Basically they can never, ever be wrong about anything ever and anyone who says differently is painted as some kind of evil Nazi.

Now I have much sympathy for the plight of autistic people and the shit they face in life but being autistic does not excuse anyone from being a dick. I also feel the need to add that this seeming lack of compassion and empathy for others has absolutely nothing to do with being autistic. The myth that autistic people lack empathy is just that, it’s a myth. So the abhorrent behaviour of some autistic SJW’s is bugger all to do with them being autistic. Furthermore this SJW attitude is by no means exclusive to autism rights. Indeed it is far more prevalent in other “rights” movements indicating that this is phenomena much wider than autism or disability rights.

A dire prophecy of doom

Looking at how SJW’s affect other movements they supposedly support gives us some dire warnings about the future of the autism rights movement. They are perhaps most prevalent in feminism today. If there are any sensible old school feminists reading this, do yourselves a favour and spend a bit of time on some of Tumblr’s feminist blogs. You will see the phenomenon I describe above. It will, or should, make you cringe. Read some of this claptrap and understand why feminism is rapidly becoming a dirty word.

The very vocal antics of these narcissistic social justice warriors, hell bent of showing everyone just how morally superior they are to everyone else, is ruining feminism. This is a shame, because all the while the Tumblr feminists are fussing about sexism in computer games, banning porn and worrying about whether the latest Avengers film is a product of the patriarchy, in the real world women in many countries are actually being oppressed. The SJW’s have made third wave feminism become a parody of itself. If anyone remembers the Viz comic strip Millie Tant then this is basically what Tumblr feminists are like. Reality has caught up and overtaken parody.

millie

click on the image above for full size

So why do I care?

Well I care because I do not want to see the cause of autism rights become a joke in the same way that feminism is becoming. For women in the west the battle for equality is largely won already (despite what the professional victims of Tumblr will tell you). For autistic people the fight has barely even started. If the general public are exposed to the self-righteous, overly sensitive and often openly hostile bullshit of the SJW’s brigade then those people will be turned off from the autism rights movement. The danger then is that the movement will not be taken seriously.

The phenomenon of SJW’s thus threatens to weaken a movement that has yet to achieve many of its goals and this is a tragedy. More worryingly though I have seen on many occasions SJW’s alienate my fellow autism parents from the very cause they purport to support. Every time one of these morally superior halfwits attacks a parent for some imagined insult they immediately drive that parent away from the cause of autism rights. These parents will probably end up getting their support and information from other sources and these sources may not be the right ones.

The biggest autism charity in the US is one called Autism Speaks. It is run by parents and mainly caters to the needs of parents. They preach a message of curing and preventing autism. This is not a good message as it perpetuates the lie that autism is some kind of medical condition. But for all their faults Autism Speaks will treat parents with compassion and kindness. They have the wrong message but they deliver it in a way that is attractive and welcoming.

So every time I see some SJW autistic self-advocate or parent verbally abuse some other parent I cry inwardly because I see another parent driven towards Autism Speaks and their ilk where they will be welcomed with love and compassion. This is a lost opportunity to make a real difference to an autistic child. For every parent driven away to organisations like Autism Speaks there is an autistic child that will have to contend with a parent that thinks there is something “wrong” with being autistic. This being the case SJW’s are more damaging to a movement like autism rights than say feminism.

The antics in feminist blogosphere just means many people find modern feminism laughable. It means only 20% of women today in the UK identify as a feminist. It’s a shame, but because feminism has already won most of its major battles this damage to the image of feminism is not really a massive problem for women. But, as described above, this is not the case with the autism rights movement. The antics of SJW fanatics are harmful and damaging to the movement, to parents and above all to autistic people.

There is hope

But not all social justice movements are infested with these self-obsessed cretins. We can all take heart and learn from the gay rights movement. No one can dispute the success of this movement over the last 20 years or so. It has been phenomenally successful and all the while has remained largely calm, non-judgemental and, for this very reason, has brought main stream society round to its way of thinking. Sure we get some SJW types within the movement but they are very much in the side lines.

Most gay rights activists have understood, it seems, that if you want to get the public to change their minds about something the very worst thing you can do is insult and alienate them. Instead we have had a largely reasonable and rational debate over the last two decades with the only shrill, foaming at the mouth and hateful talk coming from the other side (mostly the religious right). The side of reason and calmness has won. This is what the autism rights movement needs to mirror. Let’s not become a laughing stock like modern feminism. Let’s learn from the astounding and rapid success of the gay rights movement. Let’s be cool, calm and win people over with the power of our arguments rather than trying to bludgeon them with the stick of self-righteous, overly PC clap trap.

Conclusions

So I guess the purpose of this essay is threefold Firstly, it is a warning to parents about the potential dangers lurking on the internet. If you spend any time on-line in the autism community you will run afoul of the SJW’s at some time. When they attack it can be really upsetting and this particularly stings if the person doing the attacking identifies themselves as being autistic. It causes one to doubt oneself and being told that you are a terrible parent is the last thing any autism parent needs. My advice is simply to ignore these people. You cannot argue with them because their position is not based on reason. No matter what you say your words will be twisted around and used against you. Just walk away.

Secondly this is a shout out to the autism rights movement to distance itself from the SJW’s amongst us. There are plenty of smart, compassionate and very active autism self-advocates, parents and carers out there. We are the people that will make a real difference to autistic people like my son. The SJW path can be seductive, as noted at the start of this essay. Those fantasies about righteously correcting those that wrong us are very tempting. This temptation to preach is all the more alluring when we have at our finger tips the opportunity to reach a global audience in complete anonymity. I have committed this sin myself, I confess, but I would urge anyone engaging in activism to try and remember one’s own humanity. Try to empathise with people that you disagree with and calmly show them another way of thinking. Shouting and getting angry really does not work.

Finally this is a vain attempt to reach the hearts of SJW’s themselves. I know that some of you mean well. I know you have convinced yourselves that you are doing good work. But really you are not. You are harming the causes you say you care about. It’s time for some honest introspection. When you berate some poor parent on-line what are you really motivated by? Are you really trying to change their mind? Are you really trying to convince others that your position is correct? Or is it really just an acting out of pent up frustrations like the imaginary conversations I have with those fictional mean spirited Joe Publics? The problem is that despite the miles of Ethernet cable that separate you from the people you are shouting at they are still real people with real feelings and most importantly real autistic kids who need help.

Coming to terms with an autism diagnosis for your kid is no easy thing. Transitioning from societies default position of “autism is bad” to a paradigm of “autism acceptance” is an even tougher step. Most parents, sadly, do not make that step, but with love, care, compassion and gentle persuasion many more will. So think before you shout. If not for the feelings of the parents then do so for their kids.

PS – SJW’s before you even type a reply I don’t give a flying fuck if you think I am “tone policing”* you. The truth is that I am and your tone needs to be policed, deal with it.

*For those not versed in SJW speak. “Tone Policing” is a term they use to dismiss anyone who calls them out on being rude and offensive to their victims. The argument is something like; “As a victimised minority, no one has a right to tell us not to be angry and not to use angry words.” Sorry SJW’s, but if your anger is damaging an important movement, if it is driving parents towards Autism Speaks and thus harming their kids then I do reserve the right to call you out on your bullshit.

Getting on the right path

Getting on the right path

Over the last few years my view of autism has changed considerably. This is a brief history of my changing views and how those changes occurred. But first a big caveat…..

Big caveat time

The views below represent my own opinions about my own son’s autism. I think there is a good message that is applicable to other parents and neurotypicals in general. Many parents do get stuck in the “autism is bad” paradigm and I feel passionately that this is harmful to both themselves and their kids. BUT (and it is a big but) I am also painfully aware that autism is a hugely varied condition.

There are many kids and adults that are far more significantly touched by autism that the Bean is. Whilst the Bean is by no means only lightly affected he is none the less verbal, bright and we are confident that he can do well in school and lead an independent life. I understand that this is not the case for some kids on the spectrum.

I do not want to suggest that I understand what it is like to have a non-verbal, cognitively impaired child that will never lead an independent life. That is a set of experiences that I have no access to. I can empathise but I don’t really know what it is like. So for all my autism positive passion below I concede that this might stick in the throat of a parent struggling to come to terms with the fact that they will never hear their child speak.

So my “autism positive” message below is caveated by the fact that I know that it may be difficult to apply to the parents of such children. That being said, I do think that many parents of kids on the spectrum, and indeed the neurotypical population in general, have an overly negative view of autism and this essay is an attempt to redress that.

My journey to a positive perspective

In the beginning…..

Prior to autism entering our lives with the birth of the Bean, my view of autism was much like the majority of people. I saw it as a tragic thing, a bad thing, something that I definitely didn’t want my kids to have. This view of autism, although in my opinion wrong, was entirely natural given the information I had at that time.

We are all products of the society in which we live and the messages that society bombards us with about autism are largely negative. All of us have seen the films and documentaries that show what autistic people are like. Many of us will have read the newspaper articles about this marriage- ruining, life-destroying condition. Added to this is the pervasive and false idea that autism is a result of vaccines or some other toxic damage to the brains of kids. In short pretty much all the information Joe public gets about autism tells Joe that it is a really nasty bad thing.

So, like most of Joe public this was where I was at pre-Bean. As a compassionate human being I was sensitive to the plight of these poor kids and families. I wished them the best and hoped that science could find a cure or help prevent it happening in the first place someday.

This is where most parents start out. This is where most of the world’s neurotypical population are right now. And they are, in my opinion, mostly, if not completely, wrong.

The impact of autism

When the A bomb was dropped into our lives it was devastating. In my mind, autism was this big bad terrible thing. So when it first became apparent that the Bean might be autistic I did what any rational human being would do. I took my self by the scruff of the neck and shoved my head up my arse to avoid reality. I have written about this denial phase before. I think it is incredibly common but it can’t last for long and with me I guess it was only a few months before reality gave me a much needed sphinctal loosening and my head emerged blinking in to the dawn of my new reality.

A new dawn

This new dawn brought with it many tears and much sadness. I had to accept that my son had something “wrong” with him. That was definitely how I saw it at the time because that was what I had been taught autism was, it was a defect, a disability and a liability. So of course this made me depressed. Any parent who thought that their child was going to suffer because they had a “condition” would feel the same.

I don’t remember going through the anger phase of the 5 stages of grief but I do remember going through somewhat of a bargaining phase. I managed to convince myself that my son was only lightly touched by autism. I half fooled myself that he would be a lovable eccentric little professor type. A kind of uber geek that I could relive my child hood of dungeons and dragons nerdiness with. But of course the bargaining phase can’t last for ever either and so we then both entered into a depressive phase for a while before finally moving on to acceptance.

I think the acceptance phase only really started to properly kick in once we had the formal diagnosis. But even after accepting fully the extent of Bean’s autism and what it meant there was a further stage of evolution in my thinking. I’m not sure what to call it, but I moved from simple acceptance of my son’s condition to a position where I accepted autism itself for what it is. This was a gradual process over the last 18 months or so but it has brought me to where I am now. It is this final phase that is perhaps the most important, not only for my fellow parents but also for their kids.

Accepting the fact vs accepting autism

Most parents of autistic kids end up accepting the fact that their kids are autistic. A few may continue in the delusion phase indefinitely but these are rare. Reality has a habit of shoving itself down your throat regardless of the mental barriers one erects to block it out.  Once the facts are accepted however, parents may follow one of several paths.

Path 1 – Cure it!

Some go down the route of trying to cure their kids or at least normalise them. This will normally involve some kind of biomedical treatments, diet, supplements or the heavy use of behaviour modification therapies like ABA.

Path 2 – Prevent it from happening to anyone else!

Others go down the route of fighting against what they think caused their kid to have autism. The classic example is the anti-vaccine crusaders who fight tooth and nail to expose the evils of big pharma who damaged their kid in the pursuit of profit.

Path 3 – True acceptance

Both paths 1 and 2 rest on a basic assumption that there is something wrong with the child. And it is the destruction of this assumption that was the next phase in my own journey and the first step on the third path.  This path I will call true acceptance. It moves beyond merely accepting that one’s kid is autistic and instead is the process of accepting the autism itself. In order to do this one must unlearn pretty much everything the media has told you about autism. And it is this process that is the real subject of this essay.

The path to true acceptance

Of course knowledge is key here. Most of what most people know about autism is wrong. This is not to say that science has failed in this area or that there is any deliberate misinformation being spread (although there is in some cases as we will see below). It is more to do with the natural apathy that all people have when faced with issues which don’t touch them directly.

Most people simply don’t care about autism and so the only “information” they get is from TV, a few news stories and the odd documentary. The problem is that most of the time these sources get it completely wrong because it’s a complex subject and the agenda of most these media outlets is ratings rather than spreading the correct information. The truth about autism does not make for as good telly as showing some poor family with a seriously disturbed autistic child that constantly hitting his parents. Lots of autistic kids get very frustrated and may hit their parents but inevitably it is only the most extreme cases that the TV producers are interested in. On top of that the documentary will be edited and cut to emphasise just how terrible the behaviour of these kids are so they are falsely portrayed as monsters and freaks. “Freakshow TV” is big business and showing “autism freaks” is by no means the only example. Sadly in the war of ratings truth is definitely the first casualty. So invariably there is a lot of shit information spread, not by malice, but just by laziness, apathy and the overly commercial nature of our modern media.

Getting good information

The good information is out there and most parents of newly diagnosed kids will get stuck into reading many books. This is obviously a good thing but most of the factually correct books on autism still have a negative slant on autism itself. There is a still a prevailing attitude amongst psychologists and educationist that autism is a “disorder”, a problem and a defect. Whilst no reputable source of information will tell you that it can be cured there is always the implication that it would actually be quite nice if it could be.

Many books are very useful in educating oneself about what autism is, how it affects people and what changes one can make to parenting to better serve the needs of an autistic kid. However there still remains a danger that they will leave the reader with the idea that autism is a bad thing. Some exceptions in the autism literature exist and most of them have one thing in common, most of them are written by autistic people themselves.

Get it from the horse’s mouth!

Reading the words of autistic people about their autism is the single most important thing any parent can do. I will just repeat that for emphasis and I will put it in bold big text and underline it because it is so important.

“Reading the words of autistic people about their autism is the single most important thing any parent can do.”

Kids are normally diagnosed well before one can have a meaningful conversation about how their autism affects them and waiting until they reach their late teens is not really an option. So in order to learn about autism why not get it from the horse’s mouth? There are plenty of highly intelligent, articulate autistic people who are more than happy to educate us neurotypicals about autism.

Now no autistic person is going to be able to tell you exactly how it is for your kid. Firstly autism is hugely varied so one person’s autism may not affect them in the same way as another’s. But there are nonetheless some common traits. I saw this process of talking and listening to autistic people as clue gathering. I would gather clues about what might be going on for the Bean and then combining these clues with my own knowledge of my son to work out how to meet his needs better.

These clues have proved extremely useful in practical ways but at the same time listening to autistic people speak about their autism one slowly has ones misconceptions and false ideas eroded. It didn’t happen in one light bulb moment but over the course of a year or so my perception changed from “autism is bad” to autism is “just different”. I guess it’s the same process a racist or homophobe goes through when they a forced to mingle with the people they hate. As they begin to talk to them they realise that they are just human beings like them and the fear and hatred of “the other” vanishes. So it was with me when I engaged directly with autistic people in conversations.

I would encourage all parents of autistic kids and indeed any other interested neurotypical person to speak to the autistic community about how autism affects them. It is an enlightening journey and your mind will be changed I promise, but it is a journey with a few dangers along the way that may distract you from the path.

Dangers on the journey

So I have two things to warn travellers about to embark on this journey

1: Beware the the militant wing

There is a strong autism self-advocacy movement on line. Anyone seeking knowledge on matters of autism will encounter at some stage the militant wing of this movement. There are a lot of pissed off autistic people out there and with good reason. They have been marginalised all their lives and they have suffered. Many have suffered at the hands of their parents normally because their parents didn’t know how to handle their autism or followed one of the other paths outlined above. This means that certain elements of the autism community will attack parents at any opportunity.

In online conversations with this part of the autism community I have been labelled a bigot, an ableist (someone who is biased towards the able), a curebie (someone who wants to cure autism) and an evil person. Any misspeaking or use of “inappropriate” wording is leapt upon with an almost religious zeal as evidence of “heresy” and the “witch” is normally burned in a flame war. Please be wary of this and don’t let it put you off. Ignore the haters, they are just venting after probably having some very bad experiences in their lives. Don’t take it personally, just ignore their anger and engage instead with the autistic people who will treat you with respect.

The sad thing is that the angry individuals do have important information and could probably help out many parents. Unfortunately they are still caught up their own pain and so cannot communicate these ideas effectively. All they end up doing is alienating parents and pushing them onto one of the other paths described above. This is doubly sad as they themselves passionately and genuinely do not want this to happen. They explicitly state that they want parents to follow something akin to the path of genuine acceptance laid out above but their anger blinds them to the fact that they pushing people away from doing what they want. But such is the nature of anger in so many aspects of human life. Anger and fear really have no place in effective advocacy movements.

So if you encounter this hostility please do not let it put you off. There are loads of level headed, smart and thoroughly pleasant autistic people out there who really want to help parents understand their kids better. I have met many on-line and had one to one discussions on internet forums and by e-mail. There are always going to be some communication issues between autistics and NT’s but with a bit of perseverance a good useful dialogue can be established. This direct dialogue is far better than book reading in my opinion. It was the most useful thing to me. But if on-line chat and e-mail discussions are not your thing then there are many great autistic youtubers who have put together videos and first hand testimonies on all things autistic. I will link these below.

NOTE: This phenomena is by no means exclusive to autism advocates. Go on-line to any feminist, gay rights, race rights, or any other “rights” pages and you will find a similar small minority of angry militants itching for a fight. These people may have a legitimate grip against society but they are actually a hindrance to the objectives of the movement they are involved in. Like I said, anger has no real part in effective advocacy. Insulting the people whose minds you want to change is almost always counterproductive.

2: Beware of misinformation

There is still a whole heap of misinformation out there and some of it, unlike in the mainstream media, is deliberate. There is a whole flourishing industry of autism cures that are eager to grab an unsuspecting parent’s cash. These parasites rely entirely on parents following paths 1 and 2. In order to sell their shit they need parents to remain convinced that autism is a bad thing to be cured if at all possible. So you will see many well written and seemingly convincing articles presenting autism as just that. Check your sources. If it’s featured on ‘Autism Speaks’ or ‘Age of Autism’ then it’s probably a load of crap. Above all, before you take any advice on medical or therapeutic “treatments” for autism please check the science, not the pseudoscience, opinion editorial, clap trap you will find all over the interweb, but the actual peer reviewed studies that demonstrate the efficacy of the treatment. If it ain’t peer reviewed it does not count, it’s that simple.

Three Reasons why all this is so important

So why have I taken the time to write my longest blog post to date on this topic? Well I want to boil this down to three good reasons with the last being the most important.

One: The Mental health of the parent

Thinking of ones child as ill or defective is not mentally healthy for the parent. No one wants to have a damaged child and even though any such damage will not, I hope, diminish the love one has for ones kids it still weighs heavy on the parent’s mind. Parenting is a worrying business regardless of whether ones kids are “normal” or not. So if one is constantly plagued by the notion that ones child has “problem” or a “disorder” then it is clearly only going to exaggerate the natural instinct of parental worry. I know that when I started my autism journey I worried constantly. Some of my earlier posts here will reflect that worry. It was exhausting at the time. If, however, one can get into a healthy mind set about autism then much of this worry dissipates.

Now I’m not suggesting that everyone should just be all jolly and positive about autism and never acknowledge the down sides. Parenting an autistic kid is hard and the facts are that we live in a prejudiced world that is geared towards the needs of the neurotypical. Autism means both the parent’s life and the child’s life will be harder. There is no getting away from this fact. BUT these hardships are, for the most part, more to do with failings in wider society rather than anything intrinsic to the autism. So rather than wasting energy worrying about how to fix the autism it is better, and mentally healthier in my opinion, to worry instead about changing societies attitudes towards autism.

Two: Learning effective parenting strategies

I have touched on some of this above but really some of the most practically useful things I have learned about how to deal with the Bean have come from talking to and listening to his fellow autistics. Of course this learning can only really happen if one stops viewing them as damaged and starts accepting them as neurologically diverse humans instead. Viewed in this way they can then be rightly seen as the experts on the “what it is like to be” autistic. And getting a better understanding of the “what it is like to be” of autism is absolutely vital if we are to take effective action in being better parents, teachers, friends and co-workers to autistic people. It is in fact the failure of neurotypicals to understand and empathise with how autistic people experience the world that is the source of most of their problems in the first place.

Three: The Mental health of the child

But the single biggest reason for taking the path of true acceptance is the mental health of kids like Bean. Autism is not and never has been a mental illness but the prevalence of mental illnesses in autistic people is shockingly high. There is nothing in particular about having an autistic brain that would mean depression and anxiety disorders are intrinsically more likely to occur. This plague of mental illness in autistic people is entirely down to the prejudices they face due to the attitudes of others. Absolutely key to that is of course the attitude of their parents. If a parent can’t move on and accept that their autistic child is just different rather than lesser than his neurotypical peers then what hope is there that the child will have positive self-image?

If parents are constantly trying to modify the autistic behaviour and to normalise their kids then how can this not eat away at the child self-esteem? Essentially they are being taught that their way of being isn’t good enough, that they are broken and should fix themselves by behaving neurotypically. This cannot be good, ever.

This attitude is very similar to the psychological damage heaped upon generations of gay people by their parents. Even though the parents of the 60’s and 70’s many have accepted their children’s homosexuality as a fact many never really accepted the homosexuality itself. It was always something dirty, shameful and not talked about. These kids then grew up against a constant background of knowing their parents disapproved of who they were.

The parents of these children may not have said it out loud but secretly they were disappointed in having a gay kid. And guess what? Despite the veil of white lies they told their kids about how they “didn’t mind” their “choices”, deep down their children knew that they were a disappointment because of something they had no control over. Again the psychological damage from this is evidenced by the prevalence of mental illness in gay people of my generation.

A similar psychological battering is occurring today for many autistic children. Please do not mistake this for parent bashing, I attribute no blame here. The parents of today’s autistic kids are like the parents in the 1960’s of gay children; prejudiced only because they have been taught to be by society. There is no evil here, only ignorance.

Closing thoughts

My thinking about the nature of autism has changed dramatically over the last few years. The position I am in now is that I view autism as a neurological difference that is neither good or bad. But I must stress again that this is based upon my experiences of my own son and how his autism affects him. I find my new positive outlook helpful and I think it will benefit the Bean. I am also convinced that for kids like Bean a positive outlook on autism is the most useful mind set for their parents to adopt. But I am also painfully aware that not all autistic children are like Bean. So I feel the need to emphasise again to any parents of more severely autistic children that I do not in any way judge any parent or autistic person that does not share my outlook.

So I guess what I am saying is that I would encourage everyone to engage with the autism self-advocacy movement and learn about autism from autistics. This will hopefully foster a more positive view of the condition which will benefit all.

Links

Autism advocacy sites

www.wrongplanet.net (autism advocacy site run for and by autistic people. It has a big and active forum. I learned a lot here)

https://www.youtube.com/user/TheAnMish (YouTuber TheAnMish is a Danish lady who talks at length about her experiences growing up with autism

https://www.youtube.com/user/neurowonderful (youTuber and blogger Amythest Schaber talks about her autism, how it affects her life and also discusses many other autism and disability issues)

Books

John is an autistic man who has had a very interesting life indeed!

Raising Cubby by John Elder Robison (John is an autistic man who has had a very interesting life indeed! ). John talks about raising his son Cubby who was also diagnosed with autism. The story culminates in Cubby’s arrest on charges involving his love of high explosives and he faced 60 years in prison as a result.

Be Different also by by John Elder Robison. General advice and observations for autistic people, aspies and geeks in general!

The Reason I Jump: Written by Naoki Higashida an almost completely non verbal 13 year old Japanese autistic boy. This shows the rich emotional life that is going on under the “Fog” of autism and dispels the myth that non verbal autistics are stupid or not engaged with the world.

Lucy

This is a post that conveys nothing good. In fact it’s about one of the shittiest things that’s happened in our lives. Sorry for the downer people but I felt I needed to write something.

This post is about Lucy. She was one of the Bean’s guide parents (that’s God parents without the God bit). She was one of my wife’s dearest friends. They had known each other since school. She battled breast cancer for the last few years and few weeks ago she lost that fight. She died aged 40.

This is a post about our sense of loss as a family and, as this is an autism blog, about how Lucy’s death might impact the Bean. Obviously I’m not equating for one second our pain with that of Lucy’s wife or parents. I fully realise that there are people who are suffering now far more than we are but this post is my little tribute to Lucy with an autism related slant.

Everyone who dies is a saint….

When people die the comments of friends and family are inevitably all about how wonderful the person was. I have often wondered what happened to all the bastards? No one ever says “oh yeah he was a bit of twat but he was kind of ok” or something of that ilk. Everyone who passes away is someone magically sainted upon death and they become some paragon of virtue, good in every way and without fault.

I understand why this phenomena of post mortem beatification occurs. It is a natural part of the grieving process to highlight the good and gloss over the bad. However logic dictates that this must be bullshit for the vast majority of the deceased. But in Lucy’s case it would not be. She was a truly lovely woman. Kind hearted, fun and beautiful inside and out. It would be genuinely hard, if not impossible, to find anyone who had any bad words to say about Lucy. She was just one of those very good people that made the world a better place, not by any grand or great deeds, but simply by virtue of them being in the world.

We chose wisely

When we chose guide parents for the Bean we didn’t know about his autism.  His naming ceremony was held in the summer after his birth so he was only 7 months old. At that time we were blissfully unaware that our child was different. For his guide parents we chose three people whom we respected and thought would be good role models for him in life. Lucy was a logical choice for any child. But when later we discovered that he was autistic, this choice suddenly became in retrospect even wiser.

You see there are not many people who can truly connect with the Bean. Unlike a lot kids he’s a tough nut to crack when it comes to engagement. His autism means that he is not particularly interested in attention from others, he does not actively seek it like other children do. So in order to interact with him one needs to make the effort to enter his world. And his world is often very odd. The things that he likes are often different to the norm so to “get in” to bean world it takes a special kind of empathy. Lucy had that rare gift.

The people that spend lots of time every day with the Bean, my wife and I for example, learn his mysterious ways and get to enter his world over time but I have only see a handful of other adults get through and connect with him right off the bat. Of those handful of adults all but one were trained professionals, specialists in working with ASD kids, well versed in the odd ways of autistic kids. The “but one” was Lucy. She did on instinct what others have trained for years to do. She got him, she got our wonderfully weird little boy and she connected with him straight away. And that is testament to what a beautiful and empathic person she was.

Every autistic child needs a Lucy

Kids like Bean need strong advocates in their lives, more so than neurotypical children. This is because we still live in a world that is prejudiced against the different. The Bean’s life will be tougher because he is autistic, sadly there is no doubt in my mind about this. As a parent that’s been the hardest things to come to terms with. Because of the prejudices and ignorance of the world my little boy will suffer and whilst my wife and I will do all we can to protect him there will inevitably be pain caused by being square peg in a round world. Thus far he has been cushioned from the potential cruelty of others but this can’t carry on forever. He will step out into the real world and have to face it one day. And this is why people like Lucy are so important to kids like Bean.

I have no doubt that she would have fought for him as hard as we would. She would have helped him though the difficulties he will face, her natural goodness would mean that he would have another adult he could rely on completely. The gift she had for connecting with him combined with unconditional positive regard would have helped draw him out of himself, nurtured him and helped him find his way in a confusing world. Later in life when he becomes a stroppy teenager and completely ignores anything I (or my wife) have to say about anything Lucy would have been an adult voice of reason that perhaps he would listen to. I could see her gently advising him when he ignored us.

Every autistic child needs a Lucy in their lives. Many autistic kids will have warrior parents who will battle hard for them. Most, however, are not lucky enough to have other adults outside of their parents who will offer that unconditional love and at the same time be able to break through the autism fog and connect with them. Our little boy did have that and now it’s been taken away and it’s not fucking fair.

None of this situation is fair. Mostly, of course, it’s not fair on Lucy’s wife as they had only been married a few years and she has been robbed of the future they were supposed to have together. It’s not fair on Lucy’s parents as no parent should ever have to bury their child. It’s not fair on the rest of her family, a family already devastated by cancer in the past. It’s not fair on any of her many friends who will miss her dearly. And no, it’s not fair on our little boy either. He needs his guide parents more than most kids do and now he’s lost the one that perhaps had the greatest natural ability to help him. This is not how it was supposed to be.

The thought I keep coming back to

The Bean is only 5 at the time of writing so he does not have any real concept of death. His tender years will mean that he will be spared the pain that we are feeling at Lucy’s death. He won’t feel that sense of loss, he won’t shed tears or find himself welling up at inopportune moments. For this, of course, we are thankful. No one wants to see their child upset so for Lucy to die before the Bean is able to comprehend such thing is a small blessing but it is also at the same time perhaps the most tragic thing. The thought that he won’t even know what he is missing out on for some reason haunts me. He won’t ever truly appreciate her love, he won’t ever again benefit from her kindness and he won’t even realise that something is missing that should have been an important part of his life. It’s just not fucking fair. The world is horrible sometimes and at the moment it is.

photo

Lucy and the Bean sharing a joke just before Christmas

A waste of talent

This is an article I wrote for the engineering business press in the UK. It is being issued as a general PR piece by my company. Normally I write fascinating technical articles as spray nozzles but I thought I’d try an use my business to do some good for the cause of autism. It is an article about how the autistic mind can often excel in the fields of engineering so is entirely relevant to my normal target audience in my work related writings, namely engineers and engineering managers. If anyone reading this knows anyone working in those fields please help spread the word. This is an important message to get out there.

Whilst the article below focuses on the strengths of the autistic mind when applied to engineering this is by no means the only area in which autistic people can excel. There are many success stories in the arts, computer science and other areas. Sure some careers will be made more difficult by autism but with many jobs the differences in the autistic brain can actually be turned into an advantage. So often the media only focuses on the disadvantages of autism and this article is my way of highlighting the strengths of the autistic brain and hopefully get some decision makers in engineering companies to see the opportunity to hire autistic talent.

Once again: please share and link this with anyone who you might think is in a position to act on the suggestions of this article.

A waste of talent

What would you think if I told you that there was a group of people within our society that probably contained amongst their members some of the greatest scientists, inventors and engineers humanity has ever produced? Amongst its members are likely to be Einstein, Tesla and Newton as well as many of the techies that were responsible for the dotcom boom and the explosion of Silicon Valley into the world’s most concentrated area of business wealth. I presume you would, as engineering / technical companies, want a way to identify this group of people and to get them to work for your business if possible. What if I then went on to tell you that only 15% of this group actually find full time work as adults? Would you think I was talking nonsense? Or would you be worried as to how we can allow this waste to happen? The more business savvy amongst you might immediately see this as an opportunity ready to be exploited and I would agree entirely.

The group I am talking about is the autistic people in our society. A group that now makes up about 1 in 100 people in the UK. A group that is generally willing and able to work but is woefully under-utilised in the workplace. More specifically it is a group whose minds are often particularly well suited to engineering work.

What is autism?

Autism is a hugely varied condition and a full detailed explanation of all its manifestation is beyond the scope of this article but very briefly: Autism is defined as a social communication disorder. We run into some problems right off the bat with that definition. A “disorder” implies that something is “wrong” with autistic people, that they are disabled or less capable than normal “neurotypical” folks. This is incorrect. Whilst some autistic people are disabled by their condition, for many autistic people their autism is a better viewed as a difference in brain wiring neither better nor worse than a normal brain. As with any difference, though, there will be strengths and weakness. The contention of this article is that the strengths of the autistic brain often significantly outweigh the weaknesses when it comes to working in the engineering sector.

The strengths of the autistic mind

The media often focuses on the weaknesses of the autistic mind. These weaknesses do need to be considered as they impact heavily on having an autism friendly work place but first I want to highlight the potential strengths of autistic people. Specifically the strengths when it comes to working in the engineering disciplines.

1 An ability to think and see differently

The different brains of autistic people mean they can often approach problems in a way that neurotypical people don’t even consider. They will often bring design concepts to engineering problems that have not been thought of before. On the grand scale of human achievement we have people like Einstein and Newton who made their ground breaking contributions to science by thinking things that lesser mortals were incapable of. There is nothing intuitive about general relativity. It took a different kind of mind to break free from the prevailing thinking.

Einstein and Newton showed strong autistic traits although neither were formally diagnosed. Clearly not every autistic person is going to be making earth shattering scientific discoveries, it takes a rare genius to do that, but on a smaller scale this ability to think differently can be immensely valuable. Would having autistic brains on the design team that can come at a problem from a different angle be of value to most firms? Could a more neurologically diverse team solve more problems, innovate better and thus have a competitive advantage? I suggest that they would and it seems the CEO’s of Silicon Valley agree as their use of autistic talent is well publicised.

2 Thinking in pictures

Many autistic people have an amazing ability to visualise complex objects and literally think in pictures rather than words. A particularly good example of this is a lady named Temple Grandin. She has a PhD in Animal Science and has worked designing slaughter houses and animal handling systems for decades. Her designs revolutionised this industry, made it far more humane and efficient. She is also autistic and her mother was told that she would never learn to talk or lead an independent life.

Temple attributes her engineering success to her ability to “think in pictures”. She sees how the cattle will move and react and she instinctively knows how the cattle runs and chutes need to be structured to keep them calm and moving. She literally sees her designs in her brain and then translates them into engineering drawings. Of course we all visualise to a certain degree but often the autistic mind will often have superior picture thinking capacity. Does this ability to think in pictures sound like the type of thing that an engineer might find useful? Again I would posit that it is of great utility.

3 Focus

Many autistic people have an uncanny ability to focus intensely on a problem for hours at a time without tiring of it. Silicon Valley is full of autistic computer coders who will pull 24 hour shifts making or debugging lines of computer code. Not many neurotypical people can match this level of focus. For those tight engineering deadlines does this not sound like a big asset for any firm?

The perfect combination

With these traits it is almost certainly true that there are many potential superstar engineers who are currently unemployed because their autism also presents some significant barriers to gaining employment. So the savvy engineering firm who is on the lookout for new talent only needs to learn how to overcome these barriers to tap into this talent. This to me seems like an opportunity to gain a competitive advantage in the recruitment market. The question then is how do we make autism friendly work places?

Making autism friendly work places

Unfortunately it is beyond the scope of this article to cover this topic in full but a few pointers can be given as well as some suggested further reading for those who wish to embrace this opportunity fully.

The interview process

The social communication issues faced by autistic people can make an interview particularly stressful for them. This means they often interview quite poorly when compared to neurotyopical people. If, however, certain modifications to the interview process are made then it is perfectly possible to “see through” the autism and assess the ability of the candidates to actually do the job. Which after all is what it is all about!

The work place

Certain allowances may need to be made in the work place. The hustle and bustle of an open plan office may be incredibly distracting for an autistic person who has sensory processing issues (a common problem with autistic people). In some cases UV lights and other humming electrical equipment can be deafening to the autistic mind. Quiet working places or the ability to work from home will often solve these problem.

Team working

Autistic people often work better alone. When working in a team it is better to assign to them discrete tasks within the team that can be completed individually. Obviously in many situations collaborative working will be required. In these cases it is often better to develop some key workers who understand their autistic colleagues well and ensure that it is those workers who collaborate on tasks with them. Throwing an autistic person into a team of strangers to work with is probably not a great idea. They can, however, form very good close working relationships with people they have developed trust with.

Flexible hours

Being autistic in a neurotypical world is tough. Many autistic people have told me that the effort of interacting “normally” or trying to behave neurotypicaly mentally exhausting. They need to “act” every day of their lives. Sometimes this results in burnout. A good employer needs to understand that sometimes autistic people will require down days to recharge. This is not to say they need to work fewer hours it is simply the recognition that from time to time home working or a day off to recharge may be necessary. With some flexible working patterns, though this downtime can be made up by additional hours at other times in the week.

Precise instructions

Often autistic people struggle with loose or open instructions. If, however, they are given clear goals and instructions then they will tap into that autistic focus and get the tasks done effectively and efficiently. Most neurotypical people tend to enjoy having the freedom to interpret tasks on their own and tackle problems in their own way. Often autistic people will need some help starting and structuring a task but once they understand exactly what they need to do they will excel. In some respects they actually respond well to micro-management, which is of course a common complaint from most workers!

So why am I writing this?

The short answer is that I have a son with autism. He’s not even 5 yet so is a little too young to be worrying about a career in engineering just yet but there are thousands of his older peers who face bleak employment futures. Only 15% of autistic adults are in full time employment in the UK. This compares to 43% of adults with disabilities in general. This, of course, is an emotive and worrying issue for me as a father but I also see this as a complete waste of talent. Taking off my father hat and looking at this objectively as the owner of a company in the engineering sector this is an opportunity to find great new engineers.

Now my company is not a huge company we primarily offer advice and products around spray technology and nozzle. We are small and specialist so we don’t employ hundreds of engineers by any stretch of the imagination but when we are next hiring our company will be autism ready. Will the next person we hire be autistic? The law of averages says probably not. But we will be able to make allowance for autistic candidates so we won’t discount them by mistake. If you want to learn more then there are some resources linked below and I am always more than happy to speak to any fellow business owner or their hiring managers who want to learn more about making autism friendly work places. My hope is that by the time my son gets to working age that 15% employment figure will have vastly improved.

Further reading

The National Autistic Society’s Employment Training Team can provide support and training to managers, colleagues and employees with autism. You can contact them to discuss your requirements on employment.training@nas.org.uk or call 020 7704 7450

http://www.autism.org.uk/working-with/employment-services/training-and-consultancy.aspx

The TUC has quite a lengthy guide to autism in the work place

http://www.tuc.org.uk/sites/default/files/Autism.pdf

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.