Autism & Potential for Vulnerabilty

Pride Comes Before a Fall.

I have wanted to write this post for a while now, but if I am honest I have been unsure of how best to write it, so I have put it off. As someone with Aspergers Syndrome, but also someone who works with vulnerable people I have found it quite difficult to describe what it is exactly that can make people with even mild autism so very vulnerable. I myself have on occasion found myself in situations which I have been ill equipped to handle, which is a difficult thing to admit personally and professionally. it is my own pride which makes it difficult to be objective, but I will do my best to put my professional hat on for a while. Wish me luck!

A Hidden Disability.

The main problem with Autism is that it is a hidden disability. People diagnosed with Aspergers Syndrome are classed as having a relatively mild form of autism and it is also classed as a Developmental Disability, although you will also often hear it referred to as a Learning Disability.

Many people with Aspergers are quite understandably uneasy with the term “disability”, but there are certain things that we struggle with, or in some cases are completely unable to do. By denying this simple truth, we often make our condition worse, and even more invisible to others,  leading to less understanding and social and lack of public awareness.

When you have no clear understanding of the social landscape around you and no social map to navigate by, it is easy to come across as rude, to be insulting or to be come across as arrogant without ever meaning to.

Vulnerable Adults.

The term ‘Vulnerable Adult’ has a lot of definitions and carries a lot of connotations. In my profession, we use it to mean somebody who requires assistance in the conduct of their own affairs or may be Susceptible to physical or emotional injury or more Liable to succumb, as to persuasion or temptation.
This can be because of physical disability, mental health, addiction or learning / developmental disability.

Not all people on the Autistic Spectrum can be classed as vulnerable. I think that is a fair statement. I have worked with many who manage well socially and have enough emotional intelligence to cope with most situations.

However, it is often the case that people with even mild autism are classed as vulnerable. The fact is that for many people even on the mild end of the autistic spectrum, without absolute concentration in social situations, it is easy for people on the spectrum to be mislead or taken advantage of.

Substance abuse.

It common for people with Aspergers Syndrome to put themselves in a vulnerable position. For example, many of us find it easier to level the playing field socially by resorting to a social crutch, such as alcohol or drugs. Socialising with lowered inhibitions while others are in a similar state sometimes makes social rules somewhat easier to follow. Social blunders are more easily overlooked and easing social anxiety, even temporarily, is a relief. Sadly for many people Alcohol abuse often leads on to other forms of substance abuse, which is a common occurrence with mild forms of Autism, such as Aspergers, as we struggle to cope with the world around us.

Trust is perhaps the biggest problem with mild Autism. Most people on the mild end of the Autistic spectrum are too trusting, especially if they are engaged socially. For the most part we tend to make an innate assumption that when people say they are going to do something – they will do it. We assume that when people approach us with a smile their intentions are good. When people seem to be nice to us, it never occurs to us that they may have ulterior motives. These are logical subconscious assumptions, which come naturally to us; unfortunately, the world simply doesn’t work that way.

Abuse.

I have come across a several cases of people with ASD who have been taken advantage of and there have been many similar examples in the media. Sadly in our society, violent crime in not uncommon and in the case of people with Aspergers Syndrome, the limited ability to read intent from facial expressions and poor social interaction often makes them more vulnerable to more serious types of crime, as they simply don’t see it coming.

Mild Autism is a naturally socially isolating condition. Feelings of loneliness an isolation can lead to trust out of desperation to be accepted. In cases of Autistic Spectrum Disorder in general, incidence of abuse (physical, emotional and sexual), is proportionately higher than average, and often is executed by authority figures and worse still, once a victim of abuse there is a need to question the motives of everyone around them, making an already isolating condition far worse.

Vulnerable Children.

As children with Autism get older, the social gap between themselves and their peers widens, often making them socially isolated as they approach their mid-teens. During those years, Aspie children are especially vulnerable to bullying and peer pressure, as other children have a natural need to examine and single out differences. Obviously this can have a large impact on a child’s life and if you talk to many people with Aspergers Syndrome, you will often find that their school career was a pretty miserable time for them, which is why many people with Aspergers Syndrome, although highly intelligent, often do rather poorly academically.

Awareness

The symptoms of mild autism and their severity vary wildly from person to person. Although some people on the spectrum manage to go through life with relative ease, it is never a given that they won’t experience vulnerability at some point in their lives.

I would like to be able to say that there is plenty of help and support available to those on the Autistic Spectrum, but sadly the funding for the necessary support simply isn’t there. People are becoming more aware of Autism, but we have a long way to go before sufficient help and support is available. Around the world there is a huge backlog of children awaiting diagnosis, and early diagnosis is key. The earlier a child is diagnosed, the better they can be prepared for the unique challenges they will face as an adult on the Autistic Spectrum.

Autism, Empathy & Theory of Mind

 

Autism.

I have Aspergers Syndrome and I am perfectly aware that other people have their own needs, their own thoughts and their own points of view. Where my problem lies is in putting these things together in order to work out somebody’s intentions, or perhaps more commonly, lack of intentions. For example:

Does someone want to get to know me or are they talking to me because they want something?

Is somebody not speaking to me because they are annoyed at me, or are they simply lost in their own thoughts? 

Most of the time I can work simple things like this out for myself; but there are times where I miss very blatant clues which someone else not on the autistic spectrum would immediately understand. Does this mean I lack empathy?

I think, looking back at my own experiences, it is fair to say that I look for the most obvious motives and intentions in others and assume I am correct, which would be fine if everyone always told the truth and people acted logically.

Empathy.

Empathy?Empathy is the capacity to understand and share feelings with others. It is difficult to understand something when you simply aren’t aware it is there.

I can’t look at somebody’s face and determine their emotional state – anything beyond assuming a frown is angry, tears are sad and a smile is happy – I get lost and anything more subtle and I am likely to miss it completely. The part of my brain which interprets facial expressions – the posterior superior temporal sulcus, doesn’t function as well as it should.

Approximately 85% of people on the Autistic spectrum have Alexithymia – the inability to express emotion verbally and to some extent physically – difficulty crying for example. When observed by others I suppose it is perfectly reasonable for people to assume that ASD means poor emotional empathy, but inside those emotions are alive and kicking. Indeed it can be common for people on the spectrum to be over sensitive, to the point where emotions need to be habitually suppressed in order to simply cope and when these emotions do escape – the mental and emotional feedback can be incredibly painful and even psychologically damaging.

It is easy to assume then, that someone on the Autistic Spectrum is unfeeling or insensitive when they say things or behave in a way which is inappropriate to a situation, but when you are wearing an emotional blindfold, sometimes it is unavoidable. Does that count as a lack of empathy?

Theory of mind.

Psychology is obviously a very complex business and looking at it under the lens of scientific scrutiny doesn’t make things any simpler. How do you quantify emotion or reason? How do you examine and analyze the inherently unpredictable? Well the answer is you can’t, not directly anyway.

Theory of mind is a term used to describe the understanding that other people other than yourself also have a mind and can experience the world around them in their own way, but more than that, it is the ability to, psychologically speaking, to put yourself in someone else’s shoes.

Most adults have a good degree of “Theory of Mind” – their own mind can attribute desires, emotions and thoughts in others, they can predict other people’s intentions and understand their motives. This is an inherent social skill which is normally learned naturally during childhood.

By definition, people on the Autistic Spectrum tend to have a poor “Theory of Mind”. The myriad of social cues, facial expressions, body language and vocal clues that are subconsciously used to determine somebody’s intentions or motives can’t easily be read. Therefore it makes it difficult for someone with ASD to put themselves in anothers shoes.

There is a great deal literature explaiing that people with Autism are incapable of understanding people’s intentions or motives or understanding that other people have their own plans, needs, thoughts or point of view or feelings. Typically, the more severe the Autism, the poorer the “Theory of Mind”.

Theory of mind is however a very academic concept – a useful diagnostic tool. In the real world, nothing is so black and white. A human being cannot be summed up so easily.

Emotion, empathy and relating to others can all be challenging to Autistic people to varying degrees, but it is the worst kind of hubris to sum up the emotional range of an individual based on the diagnosis of an Autistic Spectrum Disorder. People are complex, and wonderful; they are kind and cruel and they can be very brilliant and incredibly stupid and emotionally messy – being on the Autistic spectrum doesn’t change that. In the end, we are just as human and just as flawed. We just struggle to show emotion sometimes, and other times we struggle to see it, and occasionally we struggle to control it. In the end, we are just a part of the human spectrum, like everyone else.

“And now here is my secret, a very simple secret: It is only with the heart that one can see rightly; what is essential is invisible to the eye.”
― Antoine de Saint-Exupéry, The Little Prince

Autism & Vaccines – My View.

The problem with the community.

Vaccines are probably the biggest area of contention within the Autism community and there are some very strong opinions on either side.

I don’t have a child with a severe disability. I don’t know what it is to devote my life to a child who may, for the rest of their lives require around the clock care, nor do I know what it is to devote my entire life to their well being. I don’t know that anger, that sense of helplessness or the moment of grief that comes with learning that your child might not have the future you wished for them.

On the flip side, it is not uncommon for people with my form of Autism to resent being thought of as disabled. For many, the idea that we should be ‘cured’ is offensive. Many are very gifted and find their own unique niche, contributing remarkable things to society.

It is easy then to see why this argument swings back and forth, and why views on both sides get so heated.

Me & My Autism

In many ways, I am very lucky. I have an “mild” form of autism. I’m not entirely locked away in my own mind. I can for the most part look after myself and I can interact with others. My form of Autism comes with catches as much as symptoms. Sure I struggle with using the phone, and social situations are difficult self conscious affairs. but for the most part, I manage. Yes,  it can be difficult, but it is for the most part manageable.

For myself, I believe my Autism gives me some very unique traits, and some interesting gifts. If I could take a pill to cure myself, most days I would say no. But there are days… I think if even the most passionate high functioning Autistic people are honest with themselves, I am sure they would feel the same way.

My view.

It is very easy for me to form a light-hearted opinion as someone who didn’t receive childhood vaccinations, but went on to develop Aspergers Syndrome. I am not severely autistic, and I am not the parent of a child who is, I’m not a parent looking for answers.

I have read countless vaccine related studies over the years and I have often written about the subject. I have publicly given stated my opinion on Andrew Wakefields’ deplorable actions with regard to his claims in 1998 and the methodology he used.  In my opinion, his claims were unsupported, biased by greed and his methodology was obscene.

It is also difficult to ignore the simple fact that vaccines have made a huge difference to child mortality. In all good conscience, I don’t believe I could deny any child the possibility of immunity to diseases which can kill and are easily transmitted, especially among children.

Here is the thing though – the Autism community spends so much time on this debate, that sometimes I feel we are missing the bigger picture. We spend more time debating this one issue than we do at looking at treatment for those suffering severe Autistic symptoms. We need to work together as a community to highlight the positives and treat the negatives and to raise awareness on the practical issues around Autism. Early diagnosis, easing symptoms, and appropriate and practical therapies that give Autistic children the best possible chance need to be discussed, researched and heavily funded.

My conclusion after all these years is that Autism to some extent is a natural aspect of humanity and has probably been present throughout our history. It is, however very much on the increase, the numbers are difficult to argue with. The research on the whole seems to  indicate that Autism has both genetic and environmental factors. Whether those factors are vaccines, pollution, smoking, alcohol, dietary or simple evolution throwing the dice, I am not sure it matters much. What is vastly more important is acceptance within society and a practical approach to dealing with the practical issues at hand. That is what is important and should be the focus of medical science and the community. I am not talking about curing autism, I am talking about making it manageable and reducing the suffering it all too often causes.

So there you have it, that is my view. I am sure some will take issue with it, but hopefully we can open up debate on other subjects other than cause and create discussion about more practical matters.

Zen

Autism & Genetics

epigene-150x150When you research Autism Spectrum Disorders, you will quickly come to realise that there are as many theories on causes as there are researchers looking for answers. One fundamental aspect does seem to be completely undeniable however; there is a link to our genes.

This may seem counter intuitive to many people, who find themselves as parents to a child on the Autistic Spectrum, and that is quite understandable. After all, many parents have very limited, if any experience of Autism within their families, so how do we justify the genetic argument?

You may remember that back in 2003 that there was a huge buzz around The Human Genome Project. For the first time, scientists had mapped the human genome down to the last chromosome, and some serious work could begin, work which would revolutionize out understanding of our selves. Politicians hailed this breakthrough as potentially one of the most important scientific advances since Antibiotics and scientists around the world received a great deal of funding to carry on this important work. Then everything seemingly went quiet.

Genes, it turns out are quite complicated things. Your average bacterial cell has around 3200 genes. Yeast and other fungi have around 6000. The Fruit Fly, somewhere in the region of 13,000. A plant has around 25,000, while your average fruit has nearly 30,000. The Human Genome Project revealed something quite surprising. Human beings have around 21,000 genes contained within their DNA. This simple fact surprised a lot of people, and forced geneticists around the world to rethink a lot of what they took for granted.

The genome is very much more than what we thought, even just a few years ago. Indeed it turns out that our genetics are an extraordinarily dynamic adaptive system. Traditionally geneticists thought of our DNA as a kind of blueprint that pretty much dictates what our characteristics will be from the beginning of our lives to the end, with some genes being turned on, many others being turned off (we no longer need a tail for example).

It turns out these ideas are very much an oversimplifcation however, and largely as a result of The Human Genome Project, a new field in genetic research has emerged: Epigenetics.

After conception, a remarkable process begins, which determines which genes from our parents are going to be read by our developing cells and which are going to be ignored. Essentially the genes that are to be ignored are chemically imprisoned.

It has emerged, that many genes can switch on and off, very quickly and can be turned on as a response to external factors, such as the environment. Genes can be activated or deactivated temporarily or permanently. A good example of this is when we begin to regularly exercise. Suddenly genes activate which allow us to process sugars more efficiently, which has the benefit of making muscle fibres work more efficiently. If we cease this type or regime, these genes deactivate again.

When our bodies are exposed to toxins, diseases or foreign bodies, again previously dormant genes activate to help make cell repair and replacement more efficient.

Perhaps the most fascinating aspect of Epigenetics appears to be that these temporary changes can be hereditary, even while being only temporarily active. Studies performed in Sweden have found that in a remote and isolated village called Norrbotten, starvation due to instances of famine and crop failure went on to have detrimental health effects on at least two preceding generations, despite having plenty of food, almost as if these children’s bodies were trying to adapt in the same way as their parents or grandparents bodies had to, despite now having ample food. These kinds of quick single generational adaptions makes perfect sense in terms of evolution. It allows you to pass on genetic changes to your children in order for them to be better prepared for the environment you live in.

We are just gaining our first glimpses into how this incredibly adaptive mechanism works, and what happens if and when it malfunctions and perhaps how it is reacting to the very complex  environment, we as human beings inhabit. The thing that is becoming clear is just how dynamic and adaptive our genetics can be. Obviously we inherit many genetic traits from our parents, but it is now evident that the environment we live in, the environment our parents and grandparents lived in, the things and even experiences we or they were exposed to in every day life can also have an impact in how we and future generations develop.

The two things I am most commonly asked are: Where does Autism come from? and Why is it on the rise?

Family Genetics ASDAutism related conditions have probably been around as long as we have. It doesn’t take much research to spot historical figures who certainly appeared to have some of the more common traits. That being the case, there have probably always been many people who have carried some genetic predisposition toward Autistic Spectrum Disorders of one kind or another, but those genes until recently have only occasionally been expressed. Most researchers agree that combinations of genetic & environmental factors are playing a role in this recent rise in people on the Autistic Spectrum, and it is almost certain that some form of epigenetic mechanism is a part of that puzzle. It could be lifestyle, it could be pollution or toxins. It could even be evolution experimenting.

Currently The Human Genome Project is collecting most data, in order to compare the full genetic makeup of as diverse a group of people as possible in order to identify the specific genetic functions. This is research that will certainly be going on for the rest of our lives. Despite the silence in the media, this project is benefiting people already, specifically in the study of cancer. Perhaps in time, the exact nature of developmental disorders such as those on the Autistic Spectrum will become clear.

Genetic Differences – The Autistic Brain

Joseph Buxbaum PHD
Joseph Buxbaum PHD

A fascinating project conducted be a team of US molecular geneticists based at Mount Sinai and led by professor Joseph Buxbaum have been mapping the genome of autistic people.

The researched involved 810 volunteers – 60% of which had been formally diagnosed with ASD, with the remaining 40% neurotypical.

The research showed that the autistic group tended to have a very specific group of missing genes.

A simple, but important fact about genetics, is that genes can be switched on and off, but they can also be deleted. This isn’t an uncommon occurence, in fact everyone has certain genes which are deleted, that is the reason we all look different, or may look more like one parent, rather than another. Even twins can have deleted genes, leading to one twin being genetically predisposed to an illness or genetic condition that the other is not.

The genes that were noticeably absent in the autistic group were among many genes that control a  biological system called Autophagy; a complicated system which deals with programmed cell death and cell replacement and repair.

It has long been thought that Autophagy is important in brain development. During the early years of our development an almost countless number of synapses are formed, allowing the developing brain to learn, experiment and improve. All of these connections are created and controlled through the process of Autophagy – and as many of these connections prove to be useless, they are destroyed by the same process. Professor Buxbaum’s team suggest that these deleted genes lead to a system were perhaps not enough of these connections are removed, leading to a brain which is essentially “mis-wired”.

Genetics is a very complicated science and has been proven much more so in the last 20 years. While Professor Buxbaum’s research is not conclusive, it does seem to be following the pattern that there may not be a single defining cause of Autistic Spectrum Disorders, but rather a much more subtle system at play, were genetics, our environment, and even the environment of our ancestors can have a profound affect on whether autism occurs in a child or not.

Zen X

http://www.mountsinai.org/about-us/newsroom/press-releases/genetic-analysis-of-individuals-with-autism-finds-gene-deletions

Autism & Violence

20121216-221822Firstly, Before i begin this post, I would like to offer my sincerest condolences to those affected by the terrible events in Newtown, Connecticut on the 14th December. Such wanton disregard for human life is almost as shocking as it is tragic. The thoughts of people across the world are with those families and their friends whose lives are forever changed.

Over the past couple of days I have received several emails and many tweets regarding Autism and violence and violent tendencies. The subtext of these messages is linked to reports that the gunman in Newtown had been diagnosed with Aspergers Syndrome and quite naturally people have been very curious as to any possible link between his diagnosis and his actions.

Obviously, I know nothing of this young man and his life experiences, his motives or his frame of mind. It would be remiss of me to comment on his mental state or the events that lead up to these appalling events; they are as unfathomable to me as they are to the rest of you and I doubt anyone will ever fully understand what it is that can cause a mind to break in such a way.

Where I do feel comfortable commenting is on the general behaviours of people on the Autistic Spectrum. As oft happens during the turmoil surrounding stories like these, the media, naturally looking for answers and explanations have published some poorly informed articles, which is a source of concern to me. In general people with High Functioning Autistic Spectrum Disorders, such as Aspergers Syndrome are no more or less prone to violence than anyone else. More often than not, people with Aspergers Syndrome have a tendency towards justice, a very strong sense of right and wrong and a natural inclination towards fairness.

Developmental Disorders like Aspergers Syndrome can be very difficult to diagnose, and are sometimes misdiagnosed, but much more importantly, they can act like a mask for other problems, like depression or paranoia. Whatever this young mans reasons for carrying out this horrendous attack, I doubt ASD is to blame, but perhaps it did contribute to some warning signs being missed. Perhaps we will never know.

Being on the Autistic Spectrum brings huge challenges every day. We live in a world poorly suited to our needs, among people who struggle to understand us almost as much as we struggle to understand than, and ourselves. I can only hope that these terrible events do not add to the unfounded stigmas already associated with Autism. I would hope that the media and politicians would now focus on the infinitely more pressing issue of gun control in the US, reducing the risk of another tragedy happening again.

Zen X