Why I (almost) feel sorry for Richard Dawkins

So, Richard Dawkins thinks that the moral thing to do for babies diagnosed with Down’s Syndrome in the womb is to abort them so that the parents can ‘try again’.

I’ve just read over that sentence 4 or 5 times because I can’t believe that I have actually put words together in such a way that they read that sentiment. I love words. I love writing, and I love language. It makes me feel sick, angry and incredibly sad that words have been used to convey such a despicable thing.

Before I start properly, I just want to say that I’m not trying to offer any sort of comment or opinion on abortion or right to life. The problems I have with what Dawkins said are his comments that it would be ‘immoral’ to allow a Down’s Syndrome baby to live. I offer no judgement on people’s decisions in their own lives, but I do have a problem with saying that it is immoral for Down’s Syndrome babies to be born.

Here are Professor Dawkins’ reasons for saying what he said.
1: A foetus has no human emotions therefore abortion is not wrong
2: Individuals with Down’s Syndrome have nothing to offer society and so it is better for everyone that they are not brought into the world at all.
(As a contradiction, by the way, he seems to think that those children and adults with Down’s are alright to remain alive. How magnanimous of him.)

Aside from the immense anger I feel at the injustice of his comments, I can’t help also feeling a small amount of pity towards Dawkins. He clearly places at once such little value and such an impossibly high value on human life.

I believe that every individual (from conception) has value, is valued and is important. Not because they might one day be scientists, or engineers, or diplomats, or shop keepers, or opticians, or farmers, or politicians, or computer programmers. And neither because they might be kind, or generous, or loving, or helpful, or funny, or empathetic. But simply because they have been created and are alive.

Human value cannot come from what we can do, what we are capable of or even how well we can interact with others. Because if it did how would we even begin to measure that? There would always be some people who didn’t make the cut and then we’d be living in some sort of ‘Brave New World’ or ‘The Hunger Games’. But maybe that’s actually how Dawkins views us all to begin with?

Bringing things closer to his specific comment, I have so many angry questions I want to ask him. Why Down’s Syndrome? Why stop at abortion? Why not euthanase all individuals with Down’s? Why stop at Down’s Syndrome? Why not get rid of anyone with cerebal palsy? Or Autism? (Yes I know he stated that Autism is different but I’m afraid that just doesn’t wash.) What about multiple sclerosis? In actual fact, if human value is based on productivity and contribution to society why not also throw in the deaf, the blind, people with no legs, people with heart defects, mental health problems, curvature of the spine…

You see it is not our job or our place to decide who is valuable. The word ‘value’ has so many layers and can be viewed from so many angles. There are so many beautiful faces to the human existence and anyone who has spent time with someone with Down’s Syndrome (or any other disability for that matter) will tell you how much light and joy they can bring to others as well as how much they can live a happy and fulfilled life. No, they might not become doctors or nurses or lawyers, but then neither will a whole chunk of the population for many other reasons.

As for his first point- that a foetus doesn’t have human emotions. I’m not even going to begin getting in on that debate, but all the points I’ve just made about human value still stand.

The more I think about it the more I think I actually feel sorry for Richard Dawkins. (As well as being furious and angry with him.) The beauty of humanity is its richness and its depth. It’s in something so simple as experiencing excitement, or knowing peace, or being so closely entwined with others and yet still being able to learn something new and delightful in each other.

Professor Dawkins is missing this and this is both a great travesty and a complete outrage.

 

Here is a great article in response to Dawkins written by a mother of a girl with Down’s Syndrome:

http://www.huffingtonpost.co.uk/hayley-goleniowska/richard-dawkins-down-syndrome_b_5697336.html?1408622091&ncid=tweetlnkushpmg00000067

 

The Autism Files: Where’s Wally?

Do you like Where’s Wally books?

I personally hate them. If I can’t find him within seconds then I get frustrated and annoyed and usually end up slamming the book and chucking it down in a thoroughly bad mood.

A lot of people with autism view the world from a different perception from most other people. (Please note that although I am making generalised statements, I am also careful to say ‘most people’ or ‘a lot of people’ because of course there will be wide variations within people.) One of the areas in which many people with autism are different is their visual perception of details. Many people with autism have a very good eye for details. They may be able to find a dropped hair pin quickly. Or notice changes in a room’s decor or layout that are quite subtle.

Uta Frith (a developmental psychologist) talks about how many people with autism are exceptionally good at finding Wally quickly. She has put forward a theory termed ‘central coherence’ which refers to the ability to see the bigger picture. For a lot of people with autism, this is something that they find very difficult. Their attention to and focus on detail can result in not being able to ‘see the wood for the trees’. So while someone with autism might be able to find Wally really quickly, they might also struggle to give a wider perspective on what is happening across the whole picture. Likewise someone with weak central coherence might struggle to understand the gist of a story, a comic or a conversation because they can only focus on the individual details.

Apply this to the perception of the every day world and I think you’ve got a recipe for very anxious living. You might have read my earlier sentences about being able to find things quickly and thought that sounded like a good trait to have. And it would be. But imagine if you could never turn it off. If every single thing, situation and environment that you looked at was made up of each tiny detail. I think this would be exhausting and stressful. If you looked at someone’s hair and didn’t just see ‘hair’ but saw each individual strand. And if any of those strands were out of place or twisted and that bothered you, this could become highly distressing.

Someone once told me of a young man who simply could not walk into the living room of his own house after an armchair had been moved from one side of the room to the other. His central coherence was so weak that once the chair had moved, the room was no longer his own living room. He could not enter it because it was not the room he had expected it to be.

There are two faces to every coin, and two sides to every story. For people with autism there might be some benefits to being able to focus so intensely on details- this article suggests that people with autism are more skilled at using airport screening cameras for example. But there are also complex difficulties with not being able to read or understand generalised concepts and situations, and the immense stress that can come from having to focus in on every little detail of every single thing you see.

Related articles:

http://www.springerreference.com/docs/html/chapterdbid/334619.html

http://autism.about.com/od/causesofautism/a/AutismBrain.htm

http://www.autismspeaks.org/science/science-news/small-study-suggests-adults-autism-excel-screening-tasks

The Hunger Games

Ok, so I know I’m a little late in catching up with this, but I watched The Hunger Games last week. (And I’ll come clean and admit that I haven’t read the books yet- but they are definitely on my list to do so.)

hungergames

Before watching it, here’s the extent of my knowledge: there is a character called Katniss, people are forced to fight to the death in some big arena, and every teenage girl in the country is now wearing a mocking jay pin. So I really was going in with fresh eyes.

What struck me straight away was that this is another example of totalitarian literature. Along with George Orwell’s 1984, Aldous Huxley’s Brave New World or Ray Bradbury’s Fahrenheit 451. I was reminded too of films such as V for Vendetta or The Matrix.

These fictions all represent worlds either in the future or historically where the state has complete control over people’s lives. Often you’ll find that people have been divided into categories or castes, which is evident in Hunger Games. People are either genetically formed or forced througDistrictsPanemh submission into different roles. In one of the storylines of Cloud Atlas by David Mitchell, another novel with similar themes, the human race has been divided into purebloods who are the ‘real’ humans, and fabricants who are produced for specific roles for example waitresses who can work for 18 hours a day and are sustained by a protein substance that also keeps them repressed and subservient.

I’m not going to go over the synopsis of Hunger Games, but there is a very strong base theme of dystopian society. I find this interesting because I think that often the key to understanding literature is to look at the environment in which it was written.

I certainly don’t pretend to have a very deep or thorough knowledge of politics, but I do know that no matter how perfect a political model on paper, the practical implication of it is complex and tricky. People and power rarely mix well and these fictional worlds act as both an outworking of fear and a warning of what could be.

class division1Even in the real world here in the UK there are complicated positions and standings in society. While we may be attempting to move away from such stark class divisions as were evident when Orwell wrote 1984, there is an ever present malcontent with the pattern of our society where some have much and others little.

There are questions to be asked, and answers given in literature to be considered, about where responsibility lies for inequality. I am looking forward to watching Catching Fire which I know develops these themes further.

 

 

Plus, Katniss is the most awesome strong female character and I can’t help love her!

The Autism Files: the problem of time

What is time?

I don’t want a complicated philosophical answer, I just want to know- what is time?

It’s not that easy to answer is it? Most of us know what time means don’t we? It is the rising and setting of the sun, it is the ticking of a clock, it is the passing of… time… Hhmm. There’s a name for describing something using the thing itself and it’s not really very helpful if you imagine having to explain time to someone who has absolutely no idea what it is or means.

Do you know how long a minute is? I challenge you to test yourself and set a timer then don’t look at it and see if you can judge when the 60 seconds have passed. It’s actually not that easy when you are trying hard to think about it (unless you count the seconds “one Mississippi, two Mississippi…”) But having said that, most people have a general idea about the passing of time. We can gauge roughly how long it will take to travel from A to B taking into account the types of roads and the traffic for that time of day. We can gauge how much work we can get done within a given amount of time. We know when it’s ok to push time- to leave a bit late, to carry on something after the ‘finished’ time has gone past and we mostly know when time really matters and we have to stick to set times.

So now imagine someone with Autism where they cannot visualise or conceptualise the idea of time. Some individuals have very little awareness of the passing of time and may be governed only by feelings of hunger or tiredness or daylight vs darkness. (Though you can see the problems even with this when days are much longer in summer and shorter in winter.) Others have the beginnings of an understanding of what time means, but it is often a very rigid and inflexible one. Therefore you can imagine the upset and confusion when at a doctor’s appointment for 10am and they are not called until 10.20am due to delays. Or when a cake recipe says bake for 30 minutes but for some reason it isn’t ready and needs an extra 10 or 15. Or even at another level still when an individual is told that their dinner will be ready on 15 minutes but they have absolutely no idea what 15 minutes is and begin to get upset and anxious after about 25 seconds.

Visual aids can help here. Sand timers often prove invaluable as the individual can sit and watch the sand trickle through until it is all gone and they can then have their dinner/move on to the next activity/get their coat on to go out. But this isn’t very helpful if the person supporting does not know exactly how long they will have to wait.

I cannot imagine how stressful the world would be if I had no idea what time was. If I could tell the time but I was unable to perceive how long ‘time’ lasted. I can’t imagine what it would be like to know that something was happening next week but be unable to visualise how far away that was.

There are many things that cause upset and anxiety for people with Autism. But not knowing where they are in time or when things are going to happen is one of the longest enduring and probably one of the most terrifying.

What’s the message?

I have been wanting to blog about this for quite some time. But I have to confess I’ve been a little nervous and anxious about writing it because I’m not quite sure of the best way to say what I want to say.

Perhaps I’ll start with a little story of when my brothers and I were younger and living at home.

When I was 12 all I wanted to be was a marine biologist.

I wanted to swim with dolphins and whales and be like the kid from Free Willy. (I was a 90s kid!). My parents showed me the things I would need to learn. I would need biology and chemistry. I would probably study something like zoology and then I would probably have to research and label samples of plankton for a long time before I got to just spend all day mermaiding around with dolphins. I think that was when I changed my mind about that!

When I was an older teenager I got really into learning foreign languages. I loved Spanish and I decided to study languages at university and spend a year in Peru before going to take the opportunity to do two things I really wanted to do: learn Spanish as fluently as possible and work with really disadvantaged people. My parents went with me to open days and information evenings and talked with me as I excitedly explained how I was going to go and live in South America as a translator and work with people who lived on the edge of nothing.

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When my brother was about 15 he wanted to go to clown college. He is a really talented juggler and all he wanted to do was learn more. He used to spend hours on the driveway hanging onto the kitchen windowsill while he practised going backwards and forwards on his unicycle before he could ride around the street juggling clubs at the same time. I remember going with him down to London to the open day at a circus skills college. My parents paid for the tickets and wished us all the best as we went and wanted to hear everything about it when we got back. As it happened my brother’s path changed as he got older and he chose not to go to university but to work within wiring and electronics. My parents could see straight away that he’d found his niche as he’s very good at his job. In fact when he was really young all he wanted to do was work at Lego Land building the models. I think there are definitely some similar skills going on there!

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I have another brother who chose at about the age of 2 and half that he wanted to be a drummer. My parents bought him a drum kit and eventually a sound proof room to go with it, much to the relief of the rest of the street! They proceeded to help him carry his drum kits around for the next 19 years or so as they drove him to concert after concert and gig after gig. He’s now graduated with his degree in jazz drumming and is doing the only thing he’s ever wanted to do.

I hope I haven’t bored you with our childhood history. And I wonder if you might have picked up on the main thing that I’m trying to say. No matter what we wanted to do when we were children, our parents said ‘fantastic, that sounds great.’ Clown college, translating in South America, bashing the living daylights out of drums… All our parents ever said to us was ‘do what makes you happy and work hard at it.’

I know other people, both my age and younger, whose parents don’t say this. They say ‘you must work really hard and get into a good university. That’s how you will be successful.’ When my friends used to tell me these stories I felt sorry for them. I have had conversations with people older than me, my age and in their teens who tell me that the main message they get from their parents is ‘get into a good university and get a good job’. I want to cry.

Success is not measured by what university you go to, or if you go at all. Success is not about getting a highly paid job. Success is not about fitting into a mould that someone else has made for you. Success is about finding what makes you happy, what makes you tick, what makes you passionate and working hard to get there.

No child, teenager or adult should ever be made to feel that they have to make choices in life that they don’t want to but feel that they have to because that will please their parents.

The message we all should be getting in our lives is work hard and be happy. This is not a rehearsal. This is the only life we get and it makes me so angry that there are scores of teenagers in schools making decisions on GCSEs, A-levels or university degrees that they think they have to because their parents want them to. I’m afraid I just can’t understand why a child’s happiness and fulfilment in life isn’t more important that what university or what job.

I know that to my parents it didn’t matter one inch whether we were jugglers, biologists, drummers or anything else. What matters to them, and what should matter to everyone’s parents is that their children are happy, fulfilled and do their best and what they’ve chosen to do.

Autism Files: discipline?

A constant debate among professionals, parents, or even perhaps with yourself, is how to approach the minefield of discipline among children (and adults) with ASC.

I say it’s a minefield, because unlike neurotypically developing children, those with Autism do not have the same levels of communication or understanding, or the same boundary levels.

For example, imagine a child is doing something and you ask them to stop. Perhaps they are banging their plate on the table, or throwing toy cars across the room. In a child with Autism there are many complicated factors going on when you ask them to ‘stop’.

  • They may struggle to process or understand the meanings of your words. Do you mean stop eating? Stop playing? Stop breathing?
  • They may understand your meaning, but have great difficulty transferring that understanding onto changing the way they are acting.
  • They may have such a fragile relationship with the world around them that hearing the word ‘no’ or ‘stop’ causes their confidence to be so badly shaken that you might as well have told them that they are rubbish at everything.

All children who develop without Autism will push boundaries. They may deliberately do things that they have been asked or told not to do. They may well have a full understanding of the consequences of an action (‘If you continue to pull your sister’s hair you will not be watching TV tonight’) but continue to do something anyway for a plethora of reasons. Children with Autism often push boundaries also, but have little or no understanding of consequences. In other words they may continue to pull their sister’s hair and be banned from watching TV but when it comes to 6pm and they go to turn the TV on they will have no understanding at all of why they are being sent upstairs. You can imagine the confusion and anxiety that this could cause.

A different way of looking at the world around them also has a big impact on the ways that children and adults with ASC will react to different forms of discipline. When neurotypical young children get upset or angry about something that they have been told to do or not to do they may express their frustration physically by throwing something, hitting someone or dropping to the floor. People with Autism will do all of these things too, however because they often do not have the same sensations of pain or the same ‘stop’ barriers as other people their reactions can be much stronger and more damaging. How do you go about telling someone with Autism to stop doing something when every time you do they bang their head off the floor so hard that it makes their forehead bleed?

All these things make the issues of discipline and teaching right from wrong extremely complex and many-layered. I don’t really know if I have come up with any answers. I know that I do believe that it is just as important if not more so to teach and educate people with Autism on what is right and wrong, what is acceptable and what is not, where they have responsibilities and where there will be consequences for their actions.

In this sense, people with Autism are no different from everyone else. We all need to learn to get along with people we don’t particularly like, we all need to accept that we have to do things in life that we don’t really like doing. Everyone has to experience the consequences of making the wrong decision or going against some advice or instruction. I firmly believe that if we are to treat people with Autism the same as everyone else then they too need to be able to accept these things in a way that is appropriate for them.

What I do not believe, however, is that teaching these rules and responsibilities can be applied in the same way to individuals with Autism and to each individual across the spectrum. It is really important to approach each person individually. As I said above, some people with Autism will react so strongly to being told no that they will do themselves permanent physical damage. Some individuals have little understanding of social rules and norms and so will have no motivation to not do things that cause upset to others. And of course it is essential that each time someone with Autism does something ‘naughty’ we are asking questions like ‘what are they trying to communication?’ ‘is there something that is upsetting them?’ ‘what do they want to achieve by doing this?’ It is more often than not the case that there is a message behind behaviour.

As I said, a minefield! I know I have probably asked more questions here than answered them, but I think that’s the way of it.

The Autism Files: OCD vs ASD

I attended a training course recently on the conflict that professionals and carers often come into with regards to whether a person’s behaviours are as a result of Autism or OCD (Obsessive Compulsive Disorder). I am not going to regurgitate the contents of the course here, but I was very interested by some of the discussion that came through and I wanted to explain some of the key points.

It is well known that an impact of Autism on an individual can be to perform rituals, sequences and repetitions that can seem very obsessive and cause the person high levels of anxiety if they are unable to complete them. I have worked with people who turn lights on and off, open and close doors, lift their arms up and down repeatedly, straighten out items, rearrange, reorder and readjust items and clothing constantly. To an untrained eye it would be easy to identify these behaviours as OCD.

In our society we are quite good at talking about ‘people’s OCD’. All of us I’m sure can recognise and identify certain traits and routines that we regularly go through, sometimes even repeatedly and with some level of anxiety involved. For example I have an issue with double light switches. I hate it when the switches are pointing in different directions when the lights are in the same position i.e. on or off. To my mind, it doesn’t look right if both lights are on but the switches are not matching.

Image I absolutely hate this!

This causes me so much annoyance that I will regularly walk up and down stairs a number of times to use the other switch for a light in order that the double switch might be matching. I think it’s that this looks more aesthetically pleasing to me, but what’s happened is that I’ve become a bit obsessed with it to the extent where I will actually get out of bed to go and ‘put it right’ before I can relax and go to sleep. (To my husband’s great irritation!)

So then the next question, which I’m sure you’re thinking, is ‘does she have OCD?’ I will sometimes talk about ‘my OCD traits’ and I recognise that when I’m stressed, busy, tired or unhappy, these little routines and rituals will become more prominent and I will become more easily upset if they are not right. I would definitely say that these things have an impact on my life- even if it’s just that I get cold when I ‘have’ to go down and sort the lights out! But is it really OCD?

Coming back to people with Autism; many of them will experience similar and more extreme things to my light switch difficulty. Often to the onlooker it isn’t at all obvious what the person is trying to achieve or what the problem is. But it is quite clear that just as for many of us, people with Autism will sometimes feel the compulsion and the need to do a particular activity or routine in order to just make things ‘right’. Whether that’s the feel of something, the look of something of just relating to their place in their surroundings. Many of these behaviours are likely to stem from sensory processing difficulties- see my earlier posts on sensory processing 1 and 2.

The thing is that true OCD introduces another level above and beyond the compulsion or the obsession to complete rituals, perform actions, check things or change things. What makes OCD a disorder, and therefore a deeply complex and complicated issue, is that it is not just about behaviour and anxiety. It is also wholly connected with a person’s thought processes.

Here is a cycle to demonstrate how obsessions can be never ending:

Image I could overlay my behaviour with the light switches onto this cycle:

1. Obsession: I don’t like the way the light switches look
2. Anxiety: I can’t forget about how the light switches look wrong to me
3. Compulsion: I just have to go and sort it out before I can concentrate on something else
4. Relief: I feel better and calmer when I’ve changed the switches round

The thing is that for true OCD, the obsessions are not just about how things look or making something feel just right; the obsessions are linked with fear and distress about something that is going to happen if… So if my actions had developed through OCD, they would go more like this:
1. Obsession: I don’t like the way the light switches look
2. Anxiety: If I don’t put the light switches back to the way they should be then something bad is going to happen (this could be something connected with the object itself such as the electricity short circuiting and the house setting on fire, or it could be completely removed from the situation such as someone falling ill or dying. Note that the thought process does not have to be a logical one, in fact this is part of the severity of OCD as a mental health illness in that it is not logical or reasonable to the onlooker and often not to the individual either.)
3. Compulsion: I absolutely have to go and put the light switches back to how they should be otherwise this terrible thing is going to happen and it’s all going to be my fault and I’ll never be able to live with myself.
4. Relief: I feel better now that the light switches are correct.

However you can see how this relief might not be very long lasting because as soon as a switch is used the cycle starts again. OCD is a relentless and evolving illness that causes immense amounts of anxiety, fear, responsibility and guilt.

In contrast, the behaviours that people do that are not linked to OCD such as my light switch thing (you’re going to think I’m loosing the plot over this!) or rituals carried out by people with Autism do not usually cause the same complex levels of distress. A person with Autism may become highly anxious, distressed or even aggressive if they are unable to carry out a particular routine such as straightening things out, closing windows, pacing along a particular line or grass verge etc. However, the reason for this anxiety is not connected to what they fear will happen if they do not do the thing they feel the compulsion to do. This anxiety is more likely to be centred around their difficulties in processing and understanding the world around them. For a mind that struggles to be flexible with visual information, if a room has always had the blinds up, then it must continue to have the blinds up for it to be recognised as the same room.

It is not always possible to distinguish between an action that is a result of OCD or Autism as people with Autism are often affected by OCD. What is important to ask if whether the person has the capacity to feel the cycle of fear, responsibility and guilt around completing an action in order to prevent something else from happening. This will not be an easy question to answer, but one that is key to separating Autism from OCD.

This is by no means a comprehensive discussion on the subject, there are obviously a large number of other key factors in both Autism and OCD that I am unable to do justice to here without turning this post into a small book! But hopefully this has provided some insight into the main and important differences between OCD and Autism.

And in case you’re wondering, I do not have OCD, but I most certainly do have obsessions and compulsions, and I still think these are important to address and deal with because I know from experience that they can become overwhelming and too intrusive in day to day living.