In Vitro Fertilization

Rumour of Autism Link to IVF Facts

In Vitro FertilizationJust a brief post today. I’ve had a couple of emails this week concerning a couple of news articles referring to research being undertaken to investigate possible links between In vitro fertilisation and Autism. I think they originatate from here: Quebec doctor probes possible autism, in-vitro fertilization link.

Obviously I am by no means an expert in this field, nor am I medically qualified to give an opinion, but I can shed a little light on the history, which has prompted the current investigation being undertaken in Canada at McGill University, Montreal.

Between 2009 – 2010, Sackler School of Medicine (University of Tel Aviv, Israel) undertook a study on 461 children who were born as a result of IVF. Of these children 10.5% were diagnosed as being on the Autistic Spectrum, with varying degrees of severity. Typically, the expected rate of Autism in Israel is thought to be somewhere around 3.5%.

Around the same time as the Israeli study, another more general study was being conducted in the US by the Harvard School of Public Health. At the time, a more general Health study was being conducted concerning women. During this study 111 women who had Autistic children were questioned about their fertility history, specifically concerning the use of drugs which induce ovulation. Of these 111 women, 34% had used these kinds of fertility treatment. As an interesting side note – 43% of the women questioned in this study had a history of some form of fertility problem.

Obviously these are very limited research groups, as is often the case, and although they raise some interesting questions, from a purely mathematical point of view they are hardly conclusive and require much more comprehensive investigation before any firm conclusions can be made. It is in this vein that the McGill University, in Montreal, Canada, is taking the lead in a national study involving 43 of Canada’s leading fertility experts.

So, there we are, those are the facts as they stand at the moment. If you are reading this with concerns about IVF treatment, discuss it with your Doctor, but I really must reiterate that there isn’t any concrete evidence one way or the other at the moment.

I will be monitoring the latest research as and when it is published, so please feel free to contact me for any updates. I will be posting any significant findings as and when they come up.

politics01

An Aspie View Of: Politics

OK, this is as much a personal view on politics as an Aspie view, but as I have Aspergers Syndrome and this is my blog, who is going to argue?

All to often, the things I find complicated and rather irritating, I also find boring, which is convenient – it usually means I have to pay little or no interest in them. However, inevitably, politics is something that affects all our lives and sooner or later, you have to sit up and pay attention – so it was for me in my mid twenties.

I am a natural liberal and I have read a about the proclivity of Aspies to be woolly minded liberals like myself, but that isn’t strictly true. I don’t think you can pigeon hole anyone in such a way; I think Aspies are affected by their backgrounds and upbringing as much as anyone. For me, I grew up in a very working class environment in a heavily left wing environment and over the years I have observed the obvious flaws in an entirely leftist standpoint.

As an Aspie, the world around you is completely alien. That being the case,  two truths tent to emerge. Firstly, you tend to spend a lot of time thinking about your own problems, it is perfectly natural – I believe a lot of neurotypical people do the same. Secondly, you embrace others who are struggling too – you soon become aware that life is an uphill struggle. You see other people and wonder why they put obstacles in each others way, such as sexism, racism or religious differences. After all, we all have to cope with pretty much the same thing and ultimately we want similar things out of life. I will go into this in more depth in a future post, but for now, suffice to say, for me, liberalism comes closest to addressing those truths. Others are more practical thinkers, focusing on the mechanics of society, its nuts & bolts if you will; yet still share similar views on the way people treat each other.

In the past ten years or so I have come to find politics and different forms of governance fascinating. On the other hand I find all politicians without exception, incredibly infuriating.

I think it is fair to say (hopefully most of you reading this will agree), that nobody has gotten it right so far. From party politics, to different types of government, in one way or another there are inherent flaws in these systems and those flaws tend to be the human element. One of my favourite authors, Douglas Adams, once said:

“Anyone who is capable of getting themselves made President should on no account be allowed to do the job.”

I think Douglas had a very good point. From my point of view politicians make promises with very little information on the practicalities of delivering on that promise, and then some years later, when asked about that promise, they string words together which individually are easily understood and sound right, but which collectively completely fail to answer the question. It is quite an art form really and must take years to perfect.

Perhaps what really confuses me most about the issue of politics is just how blindly people follow the agenda of the media. Newspapers first priority is to sell newspapers; TV Stations need viewers to see their advertisements and product placements. It would seem obvious to be that controversy and pushing a specific political or social agenda is the ideal way of achieving those goals.

As an Aspie, it is in my nature to think about things I am exposed to. I subconsciously look for patterns in everything and I follow what I see to their natural logical conclusions – in short I tend to question things I read and see. I try to apply, what I like to call the “Common Sense” filter to the things I exposed to. Unfortunately for me, this often leads me to some very unfashionable and unpopular views, some of which admittedly are complete nonsense.

When I hear people talking about the evils of immigration or how all unemployed people are lazy time wasting layabouts or when I hear subtle racism, casual sexism or religious intolerance, I quietly seethe inside. I am ashamed to admit that all too often I keep my moth shut. That part of myself, who finds it difficult enough to fit in to this alien world around me already, screams at me to keep quiet. It reminds me of exhausting arguments in my past where I have failed to change intolerant views. Whereas the rational part of me quietly whispers in my ear, telling me what a coward I am and at times rages about the injustice of it all. It is a shameful internal struggle, but one I feel I must admit to.

I would like to point out here, that I am equally aware that my own views are flawed. I view the world in very logical terms, and tend to ignore the human element myself. Perhaps people need controversy and society may well rely on political juxtapositions. It could well be that those very things keep the political world turning and help make the best of a bad situation. All I know is that as an Aspie, I struggle to come to terms with politics that treat one set of people differently from another based on age, sex, race, disability, socio-economics or religion. Fundamentally I believe we are all of equal value. Is that part of Autism? Perhaps, but I hope it isn’t an exclusive trait.

I would be fascinated to hear from fellow Aspies and what views they have on the world of politics.

Thanks!

ZenEmu X

Helping Autistic Children

Autism: DSM-5 Excluding those who need help.

Diagnosti and Statistical Manual of Mental Disorders One of the most influential publications in Mental Health comes from the United States. It is called the Diagnostic and Statistical Manual of Mental Disorders (DSM). First published in 1952 by the American Psychiatric Association, the DSM is a guide on classifying mental disorders. It is used by Psychiatrists, Psychologists and General Practitioners in order to help them decide on the diagnosis a patient should receive. The DSM was needed in order to try to standardise the diagnostic process, making sure specific terms (anxiety for example) mean the same thing to different practitioners.

For numerous reasons, Autistic Spectrum Disorders (ASD’s) are difficult to diagnose accurately. In the UK and the US approximately 1 in 115 people are diagnosed with some form of ASD, but recent research suggests that the number of people who actually fall under the ASD umbrella is much higher. I won’t quote exact figures here because sources vary so much, but it is easy to imagine that if 1 in 115 are diagnosed, a considerable number of people also fall through the cracks in the system.

Children with ASD’s can be helped to a certain extent. There are therapies, which are helpful and can make be quite beneficial. I must emphasise that these therapies are by no means a cure, but young minds are incredibly adaptive and it is easy to see how the right interventions could help improve behaviours and symptoms in children. Providing this kind of treatment takes a lot of time and resources. In adults, who are simply less adaptive, there are no really effective treatments.

In the ever practical medical profession, there is always an argument about cost effective treatment – Outcome vs Resources. Getting a diagnosis as a child can be a very long winded affair and all too often, the first diagnosis, isn’t the last diagnosis. Trying to get a diagnosis as a teenager or adult can often take upwards of a year, in some cases several years, due to the limited resources available.

ASD’s have many symptoms, and all of them tend to share some symptoms in common, most notably, some impairment in social interaction. However the symptoms between different areas of the spectrum can be quite distinct, such as delays in language development in High Functioning Autism (HFA), something which doesn’t occur in Aspergers Syndrome; a small thing, which in the long term can produce extremely different experiences and symptoms in later life. In ADHD, once taught, social skills tend to be understood, not so with Aspergers or HFA.

In 2013 the fifth revision of the Diagnostic and Statistical Manual of Mental Disorders is due to be published. A proposal for DSM-5, is that rather than diagnosing Aspergers Syndrome and High Functioning Autism as individual conditions, they grouped together with Persuasive Developmental Disorder into one Autistic Spectrum Disorder group. Under the proposal, there are also some exclusionary criteria, which are vague and involve not taking into account possible additional learning disabilities. Essentially this means if a child has a learning disability which also affects their ability to socially interact, the ASD diagnosis becomes irrelevant.

The agenda here seems not to be to address the lack of resources available to treat and diagnose Autism, but to change the criteria, reducing the number of people (especially children) who qualify for therapy. This seems to be a very political move, which pushes the agenda for high functioning people who require little from the medical profession, while at the same time excluding those who absolutely do require help.

DSM-5 will not be finalised until early 2013, so the exact wording hasn’t been agreed upon yet, so the exact impact is still unclear. However this proposal is extremely worrying. These are guidelines which rather than increasing much needed resources, will simply exclude people from eligible to seek those resources.

Social Activites

Aspergers Syndrome – Children and Treatment

A lot of the emails I receive are from parents of children who have recently been diagnosed with Aspergers Syndrome and are looking for information in terms of treatment. I welcome these emails and if you do have any questions, I am more than happy to answer or try to point you in the right direction for the information you need. (If you wish to contact me directly – please just click here).

However, I thought it was time to briefly cover the subject of treatment. The first thing I need to say is that there are no hard and fast answers here, and to anyone new to the subject of Autism or Aspergers Syndrome, I feel it important to issues a warning: there are a lot of charlatans out there claiming miracle cures and therapies – in truth, the science behind many of these claims is spurious to say the least, and often with a financial motive.

Before we go any further, it is vital that you grasp the fact that Aspergers Syndrome and Autistic Spectrum Disorders refer to physical fundamental differences within the brain, which occur during development in the womb. In short, the architecture of the brain and the way it works are different from the norm and are physical and biological in nature, not purely psychological.

Cognitive Behavioural Therapy (CBT):

Cognitive Behavioural Therapy - CBTSymptoms of Aspergers or Autism tend to show up at around the age of four years of age – this tends to be the age where most children start in earnest to pick up basic social skills, so this is initially when those differences start to become apparent. The wonderful thing about children however, is how adaptable they are. Cognitive Behavioural Therapy is undertaken by a professional therapist and is essentially a talking exercise with set goals and can be used to help address some of the milder social symptoms of Aspergers and Autism, essentially by promoting and practicing the social areas these struggle with. The ethos of CBT is very much one of alleviating the severity of symptoms and in cases of Autism Spectrum Disorders, it tends to be used as an individual therapy, as apposed to a group exercise.

CBT isn’t suitable for everyone and tends to be suitable for children with only mild to intermediate symptoms, but if your child has been diagnosed, it most certainly is worth attempting an assessment for this kind of therapy.

Diet:

I will be very frank here. I have read a lot of nonsense online about the dietary needs of children on the Autistic Spectrum, including misleading articles suggesting that diet is a cause of ASD’s, which is simply wrong.

There are considerations however:

Generally dietary needs in children vary from child to child. Some children become hyperactive with too much sugar, or react badly to specific additives, preservatives or flavourings. This is equally true of children with Autistic Spectrum Disorders, but there is a key difference. ASD’s in general tend to make coping with these episodes difficult and the period it takes to calm down is likely to be considerably longer.

Obviously as with any child it is necessary to monitor their diet and their reactions to certain foods and in the case of children with ASD’s it is important to bear in mind that any negative behavioural reactions are likely to be a more severe.

A common problem with Aspergers and Autism in particular, is one of digestion. For reasons which still remain unclear, bowel and digestive problems often occur in people with these conditions – and they usually start around puberty. These problems can manifest as Irritable Bowel Syndrome and in some cases can lead to more serious problems. This is an issue that parents of children on the Autistic Spectrum should bear in mind in terms of ensuring their children have the best chance to avoid these issues by maintaining a healthy balanced diet. I recommend having a discussion with dietician, while your child is still young.

Medication:

Medication is obviously a very complicated subject. Views seem to vary so much it is difficult to make informed choices are gain an informed opinion. One of the most common medications prescribed for children with Aspergers at the moment are known as Selective Serotonin Reuptake Inhibitors (or SSRI Anti Depressants). The most common of which is a low dosage of Fluoxetine Hydrochloride (you may have heard of it as Prozac). SSRI’s are generally considered safe medications, but they are not without their side effects and I feel that it is important for parents to research these medications when they are prescribed for your own peace of mind and obviously to monitor any positive or negative effects.

My personal opinion is that many of these medications do change (albeit temporarily) basic brain chemistry, and although they can have benefits, it is always a good idea to seek a second opinion and to be as informed as possible.

School:

The severity of Autism varies tremendously and the help and support a child needs should be dependent on their needs, not their diagnosis.  It is important that you discuss your child’s needs with the school, but equally I am not an advocate of intervention for interventions sake. Children with these conditions have enough differences to cope with and any help provided by the school do need to bear that in mind and any intervention must be constructive, not obstructive.

Perhaps one of the most difficult things for these children is the growing awareness that they are not the same as their peers. All too often, children with Aspergers Syndrome do very well academically, but as they get older, the social gap between their peers and themselves becomes wider and wider. Making friends and learning to maintain friendships is an important life skill, but one that is extremely difficult for them to master. Schools can help in this respect by helping these children present their strengths and giving them a common focus that they and their peers can all relate too.

Activities:

Social ActivitesChildren with Aspergers Syndrome often develop “Special Interests” and engaging them in activities involving these interests can be a good way to break down barriers and help to improve social skills, but equally it is important to move away from those interests and to carefully introduce social activities into their routines.

Typically as they get older, children / teenagers with Aspergers Syndrome tend to become more socially isolated as they fall further behind in social development, but that doesn’t always need to be the case. With the right activities and interests it is possible for children with Aspergers to form social ties in alternative ways.

Support Groups:

Autism Support Groups for Parents are becoming much more common and it is important that you as parents learn from other peoples experiences. Raising a child with Aspergers is always going to have its challenges (and rewards) and it isn’t going to be an easy path, but with the support and help, it can be made much easier. Look at online social groups and forums, and never be afraid to ask questions. Ultimately knowledge is always going to be a benefit.

Brain Imaging

Autism & Brain Development in Children.

Recently at the Annual Meeting for the International Society for Autism Research (INSAR), some fascinating was revealed into the brain development of infants with Autism.

Dr. David Amaral

At the 10th annual meeting of INSAR, Dr. David Amaral of the University of California, Davis revealed that the brain development associated with regressive Autism can be imaged in children as young as 4 months of age. This is not only a remarkable discovery, but also lends a great deal more weight to the argument that the MMR vaccine (which is given at 12 months) does not cause autism.

 

Dr. Eric Courchesne

Dr. Eric Courchesne of the University of California, San Diego found that connectivity between the Temporal Lobe (which deals at least in part with Speech, Memory, Reading, Emotional Responses, Auditory Responses, Visual Processing and Olfactory Functions) and the Limbic System (a set of primitive structures within the brain, again partly used to process emotions and sensory input) both develop very differently in people with ASD’s very early on.

Brain ImagingAlso the  Frontal Cortex (responsible for higher brain functions such as mathematics, logic and reasoning) appears to have twice as many cells in young people with autism, but then slows in development as they age. It is thought that this could be one of the factors that leads some autistic children to develop exceptional gifts early on, but to struggle with social reasoning and development later on.

It appears that there maybe a small physical manifestion in infants with ASD’s – Dr. Courchesne has noted that “Precocious” brain growth and larger head diameters in those early months are associated with regression.” and although not a diagnostic criteria, is still nevertheless an interesting find.

Other research presented at the conference points towards possible links between ASD’s and the mothers health during pregnancy. A difficult labour or fever during the early part of pregnancy could contribute towards the development of ASD’s in children. It has also been suggested that mothers who suffer from hypertension or diabetes, or are obese before pregnancy, are statistically more likely to have children on the Autistic Spectrum.

My Thoughts.

The causes of Autism are very complex and quite difficult to pin down. The study of the Autistic Spectrum Disorders is still a very young science and as we all know, science is still largely baffled by the brain and how it works exactly, but progress is being made. It is obvious now, that people on the Autistic Spectrum do have neurological differences and in severe cases, those differences can have a truely devasting effect. However, for others there can also be some benefit and indeed some benefit for society as a whole. As we understand autism more, it becomes clearer that the thought processes behind many of our greatest advances where in no small way linked to the autistic mind.

I suppose the question many people reading this will have, is will Autism ever be cured?

I think very soon it will be very easy to detect early on in a childs development, and that treatment to help cope with or suppress symptoms will continue to improve. In time, it may be possible to not only identify the causes, but also to reduce the number of  instances of Autism.

On a personal note, I am often asked the question: If you could cure your Aspergers Syndrome, would you?

The answer to that is no, probably not. It has caused me incredible difficulties in my time and will always continue to do so, but equally it is very much a part of who I am and has granted me insights and abilities that I know I wouldn’t have had or understood otherwise.

Zen Emu X

Anxiety

Aspergers & Anxiety

AnxietyAnxiety: I’m sure you have all felt it at some point in your lives; That horrible, sickening, churning feeling in the pit of your stomach. It feels like it will never go away. The feeling of dread, the unknown, the uncertainty.

For many people with Aspergers Syndrome, perhaps one of the most debilitating symptoms they face is Anxiety. This symptom is often confused with Social Anxiety Disorder which is a different condition. Although people with Aspergers often experience Social Anxiety, it tends to be of a different kind. Individuals with Social Anxiety tend to develop severe tension/anxiety as they try to participate in a relationship, wanting to create a relationship but having low social confidence. Individuals with Asperger’s have difficulty with the actual mechanisms of communication within  social relationships – experiencing problems expressing emotions, social articulation and understanding vague verbal and non-verbal cues.

For people with Aspergers Syndrome, Anxiety can be a near constant companion and for others it can be a cyclic symptom, whereby months can go by with only minor attacks and upsets, before a full meltdown ensues. Symptoms of AS such as social isolation, communication difficulties and an inability to easily cope with change or the unexpected are all triggers for anxiety. The stress of so much anxiety often leads to behavioural problems, over sensitivity, irritation, short temper and even depression – a large percentage of Aspies will be diagnosed with depression at some point in their lives. Physical symptoms can manifest too – stomach pains, racing heart, sweaty palms and insomnia for example. Guilt, shame and regret over past meltdowns, overwhelming thoughts, fatigue, tiredness and panic attacks are also quite common. These are not necessarily symptoms of Aspergers Syndrome; they can simply be a consequence of coping with the  anxiety the condition can cause.

For obvious reasons, these issues can be especially problematic in children and young adults. For young Aspies, the battle with constant social pressure, increased social distancing from their peers, an increased sense of isolation and a growing realisation that they are different are all causes of stress and and can cause anxiety. These kinds of trigger can be purely subconscious, and when asked, a child or young adult may be entirely unaware of why they feel anxious and what their specific triggers are.

Unfortunately for many people with Aspergers, unhealthy coping mechanisms can sometimes develop to help cope with anxiety, stress and depression. These strategies can take the form of anything from OCD (Obsessive Compulsive Disorder) to substance and/or alcohol misuse and although these conditions are not guaranteed, they are far more prevelant in people with Aspergers Syndrome.

Aspergers Syndrome can’t be cured, but coping mechanisms do fall into place over time, which do help to some extent. For children, if diagnosis is undertaken early enough – Cognitive Behavioural Therapy (CBT) can be beneficial in helping to develop coping techniques to help diffuse anxiety. In some adults, especially in severe cases, medications, like Selective Serotonin Reuptake Inhibitors (SSRI’s) can help to ease some of the triggers for anxiety, but not all.

For many people with Aspergers Syndrome, Anxiety is such a normal state that to look at them, you won’t necessarily be aware of the anxiety they are experiencing, it is something that many Aspies learn to hide when they are quite young, in order to help them “fit in” better.

With Aspergers Syndrome, there can be many triggers for anxiety. The more common causes are disruption of routines, unplanned changes, sensory issues, such as loud noises or bright lights, and social interaction. The anxiety can literally be unbearable and it often increases the expression of the Aspergers Syndrome itself, causing a viscous and endless circle.

For obvious reasons we tend to want to avoid the causes of our anxiety, but this isn’t always a healthy thing to do. Ultimately we need to learn to cope and to some extent desensitize ourselves to those triggers and although that is easier said than done, it can be an invaluable learning experience.

If you know someone with Aspergers Syndrome, try to bear in mind that a lot of the time the world is an incredibly difficult and stressful place to be. Sometimes we need a little time to ourselves, for no other reason than to simply relax and cope.

Zen Emu X

Aspergers Syndrome in the Workplace

Working with someone who has Aspergers Syndrome.

Aspergers Syndrome in the WorkplaceMany people with Aspergers Syndrome struggle to get into employment, and when we do, we often have a quite tough time of it because we are easily misunderstood.  On average only 12% of people with Aspergers Syndrome manage to hold down a full time job for any meaningful length of time and the reason for that is often due to discomfort in the workplace. Changing jobs requires a lot of adaption for anyone. There is always a settling in period where you will get to know your colleagues, learn about the job and the way things are done in your new workplace. Most people adapt to this new environment fairly quickly, settling in within a few weeks. However when you struggle to read social cues, struggle with change and find new people and new environments (especially busy ones) stressful, it can take a lot longer to adapt.

When stressed it is very easy for someone with Aspergers to come across as rude, insensitive or impolite. Imagine being dragged on stage to audition for Pop Idol without really wanting to, and then being asked to juggle some fruit in your underwear while standing on one leg while singing. If you can picture that, you can picture what it is you are asking someone with Aspergers to do when they are stressed and outside their comfort zone in a new working environment.

First Impressions CountFirst impressions count, in fact they tend to last, especially at work. Unfortunately that puts someone with Aspergers at a huge disadvantage, and it can create issues and situations with colleagues which we are poorly suited to cope with.

A question I am often asked by others with Aspergers is “Should I tell my employer or potential employer?” and in all honesty, there is no easy answer to that question. Many employers will be excellent and will make reasonable adjustments in order to make your working life as tolerable as possible, but in some cases that is far from true. In most western countries there are equality laws of various kinds and employers aren’t legally allowed to discriminate, but equally these same laws are often used as a guide on how to discriminate indirectly.  In my case, yes I probably would tell a potential employer, but that is purely a personal choice.

People with Aspergers can be brilliant; they can often see problems and solutions which nobody else would. We can be incredibly creative and tend to think visually, seeing the world from a completely different perspective and many of the most remarkable breakthroughs are often found through the thought processes of people with Aspergers.  Hans Asperger used to call the children he studied, his “Little Professors” and for good reason. Once interested in a subject or problem, the Aspergian mind can focus an unparalleled level of concentration and commitment to a subject, problem or puzzle.

Giving 100% in the wrong environment isn't easyWe do struggle with some demands in the workplace. Multi-tasking is very difficult as we tend to commit ourselves specifically and totally to one thing at a time.

We can struggle with instructions that aren’t precise enough or are open to interpretation – you need to tell us specifically what you want, and how you want it to work in detail.

We like to work in a modular and organized environment, but we need a certain freedom to organize our environment ourselves.

If you need to set a deadline, make it crystal clear and set an actual date and time, don’t be vague.

Telephones can also be an issue with Aspergers; many of us struggle to talk over the phone, because it can require a great deal of concentration in order to interpret emotional or hidden meaning behind words, pitch of voice and language usage.

Email is a fantastic tool for Aspies, as we tend to communicate much better and with much more freedom when writing.

When it comes to behaviours that you find difficult or annoying, it is best to tell us directly and calmly, even if it is not work related. Never shout at someone with Aspergers Syndrome and don’t confront them in front of others.

Ask if we are comfortable in our environment, as we can be very sensitive to sound and fluorescent lighting, many of us find specific noises physically painful and some of us can see the flickering of fluorescent light bulbs / tubes.

Perhaps the most important thing an employer or colleague can do is accept that we have certain limitations, like making eye contact for example. As difficult as it can be, try to allow for that, don’t try to change us or our behaviour, because you simply can’t, but given enough time to settle in, we will open up to you and we will adapt to our working environment.

Andrew Wakefield

Autism: Revisiting the MMR Myth

Last June I wrote an Article about the MMR vaccine and the unfounded claims that it is linked to Autism. Since then I have had numerous questions from concerned parents on the topic and I just wanted to clarify the situation. I think the easiest way to do this is to run through a step by step account of what has actually happened in the seventeen years.

1994

Richard Barr

A solicitor called Richard Barr succeeds in winning legal aid for the pursuit of a class action against the manufacturers of MMR based on the claim that the MMR vaccine is a defective product, which has been widely used since 1988. Due to legal complexities, the class action must be filed and argued within ten years of the initial date that the drug was released, leaving less than four years to prepare a case. At this point, publications written by Dr Andrew Wakefield, which proposed the possibility that the Measles virus, may play a role in the development of Inflammatory Bowel Disease and Crohn’s disease. Barr contacted Dr Wakefield for his expertise on the Measles Virus.

1998

Dr Andrew Wakefield

A paper is released by Doctor Wakefield and twelve other Doctors. The paper is based on twelve children with Autistic Spectrum Disorders. The paper is published by The Lancet – a small, but respected medical journal. The paper states that the parents of eight out of the twelve children believed that their children developed “behavioural symptoms” shortly after being given the second dose of MMR vaccine, which is typically given to children at around four years of age, with the first dosage around 13 to 14 months. The paper also states that although these findings were interesting, no casual link had actually been established between the vaccine and Autistic Spectrum Disorders.

Doctor Wakefield takes it upon himself to call for the suspension of the MMR vaccine at a press conference and via a video statement, which were quickly picked up by the media, and so the MMR scare began.

As an interesting side note, Doctor Wakefield suggested that parents should opt for separate Measles, Mumps and Rubella vaccines, separated by at least a year. However, the media seemed to miss this point and many parents were unaware of this option still existed. Separate vaccines were also unpopular with the UK’s National Health Service due to increased costs.

Now before we continue, I feel it is important to point out that in 1993, Japan had a similar scare and after the suspension of the vaccine, in-depth research found no evidence of a link between ASD’s and MMR.

2001

Doctor Wakefield resigns from his post at the Royal Free Hospital, stating that he has been asked to leave due to the unpopular nature of his research and irreconcilable differences with senior staff at the hospital. By this time, Doctor Wakefield has by now gained significant support from concerned parents whose children have some form of ASD and have also had the MMR Vaccine, as most children by this stage have. For many in the media, the idea that the link between ASD and MMR exists is now unequivocal, despite ongoing research which appears to point to the contrary and objections from many respected medical professionals. There are rumours of cover-ups and conspiracies and the media again fans the flames of this particular scare – going so far as to demand to know if the UK Prime minister at the time (Tony Blair) has allowed his youngest son to have the vaccine.

2002

The story has now taken on a life of its own, becoming one of the leading debates of the year. Media confidence is shaken however, when co-author of Dr Wakefield’s original paper, Dr. John Walker-Smith comes releases a paper that finds the MMR vaccine to be safe in the vast majority of children. He adds the caveat that although no direct link between Autism and MMR is obvious, epidemiology is a blunt tool, and it is possible that a sub-group of children may exist who have a slightly increased risk of developing autism from the MMR vaccine. He also states that no evidence can be found that the MMR vaccine is damaging to the immune system, and if anything the reverse appears to be true.

Another co-author of the original paper, Dr Berelowitz comes forward, stating: “I am certainly not aware of any convincing evidence for the hypothesis of a link between MMR and autism”.

By December, several independent studies using much larger research groups have been carried out by Canadian Paediatric Society, the American Centers for Disease Control and Prevention, the American Institute of Medicine of the National Academy of Sciences and the UK National Health Service. All of their studies reach the same conclusion – that there is no apparent link between the MMR vaccine and Autism.

2004

An investigative reporter named Brian Deer discovers that Dr. Wakefield received £55,000 funding from the legal Aid Board via Richard Barr shortly prior to the release of the original paper for producing evidence to use against vaccine manufacturers. This is deemed a conflict of interest as neither the Royal Free Hospital, nor the Lancet had been made aware of this payment. Dr Wakefield, claims that the payment was for an unrelated paper which was never published (a claim which later is rejected by the Medical Council).

Brian Deer goes on to create a televised documentary, exposing the shocking fact that Dr. Wakefield had applied for a patent on a vaccine that would be in direct competition with the MMR vaccine.

During a debate, a Member of Parliament, Dr Evan Harris calls for a Judicial Enquiry into Dr. Wakefield’s ethics and suggests the Crown Prosecution Service works in Conjunction with the General Medical Council to conduct a formal investigation into the situation.

In May, The Lancet formally retracts the original paper and criticises Dr. Wakefield and his co-authors for lack of disclosure and issues a formal apology.

2005

Dr. Wakefield brings legal action against Channel 4 productions and Brian Deer, however Wakefield quickly drops the case and pays the defendants legal costs shortly after revelations that undisclosed payments totalling more than £400,000 had been made to Dr Wakefield, at or around the time of the original paper had been released, by lawyers.

2006

Brian Deer releases formal documentation, clarifying the financial situation. Dr. Wakefield had been paid several payments totalling £435,643 by solicitor’s legal aid, via Richard Barr. The payments had started in 1996, two years prior to the paper being released.

The General Medical Council, after investigation, confirms that it will hold a formal disciplinary hearing of Dr. Wakefield and his involvement with the affair, including claims that Dr. Wakefield manipulated data for his own benefit.

2007

The General Medical Council begins formal hearings of Dr. Wakefield, Professor John Angus Walker-Smith, and Professor Simon Harry Murch, under allegations of Serious Professional Misconduct.  The allegations where that these three individuals had acted unethically and dishonestly. Further to this, it was alleged that they had conducted a study on children without seeking the appropriate approvals.

2010

After much consideration, the General Medical Council reaches its formal conclusion. The panel found that the trio had acted “dishonestly and irresponsibly” and that Wakefield had treated the children involved with his study with “callous regard” and had conducted unnecessary and invasive tests. Wakefield was found to have numerous and undeclared conflicts of interest.

Wakefield was found guilty of serious professional misconduct on four counts of dishonesty and 12 involving the abuse of developmentally challenged children, and was ordered to be struck off the medical register.

John Walker-Smith was also found guilty of serious professional misconduct and struck off the medical register. Simon Murch was found not guilty, despite having previously been found to not have ethical approvals for the study.

2011

Earlier this month Brian Deer published more articles, showing exactly how Wakefield manipulated the data in his study. After interviewing the parents of the children involved in the study, it appears Wakefield manipulated the dates, so that it appeared the children became symptomatic at or just after their second MMR vaccine.

A few days ago, the Deer revealed that based upon documents he obtained under Freedom of information legislation, Wakefield—in partnership with the father of one of the boys in the original study—had planned to launch a venture on the back of an MMR vaccination scare that would profit from new medical tests and “litigation driven testing” and due to patents that Wakefield holds, would earn as much as £26 million per year for the diagnosis of “Autistic enterocolitis”, a term coined by Wakefield, referring to a controversial and unproven condition.

My View:

Let’s forget the controversy for a moment and look at the facts. Many parents still believe the MMR vaccine is dangerous and many still believe there is a link to Autism. The truth is that Autism in any form is a complicated condition. If there is anything positive to take away from the above controversy, it is that research has been extremely popular over the past ten years or so on the subject of Autism. The latest findings point to the fact that Autism has two elements. It appears that people with Autistic Spectrum Disorders have certain common genetic factors, but that doesn’t cause Autism on its own. There is a missing piece to the puzzle – an environmental cause. Could that factor be the MMR Vaccine? Research studies have thoroughly ruled that out. In fact it is now thought that whatever environmental trigger combines with these genetic factors almost certainly happens before your birth – in the womb.

The whole point of this post was to address the myth devised by Wakefield about a link between MMR and Autism and I believe that the facts speak for themselves – there is no link.

However, Wakefield’s research caused an unprecedented public outcry, and well meaning parents left their children unvaccinated. In 2008 the number of deaths caused by the Measles was 90% higher than ten years earlier. Due to the high fever and temperature caused by these diseases, an alarming number of children suffered irreversible brain damage and lung conditions.

There are risks with Vaccination – it would be irresponsible of me to say there aren’t. Some children react badly to them, some children very badly, but what we need to look at here is which risk worse? As a parent, that is up to you to decide and you must simply follow your conscience and hope it is the better choice.

If you have any comments or further questions, please feel free to ask or to email me.

Best wishes

ZenEmu X

Vulnerable1

Aspergers & Vulnerability

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, 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 AS so very vulnerable, partly because it is personal to me, but also because it is difficult to be objective, but I will do my best and put my professional hat on for a while. Wish me luck!

The main problem with Aspergers Syndrome is that it is invisible. Make no mistake though, Aspergers Syndrome IS a Developmental 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 and by denying this simple truth, we often make our condition worse, and even more invisible, leading to less understanding and social and public awareness of Aspergers Syndrome.

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 arrogant without ever meaning to. My father-in-law calls Aspergers “Rude Bastard Syndrome”, and he isn’t far off the truth and I am sure I have come across that way to many people, including family and friends.

People with Aspergers Syndrome can be Vulnerable AdultsThe fact is, without absolute concentration in social situations, it is depressingly easy to miss some hint or point and to cause incredible offense without any real idea of why or how. When that concentration slips it is easy to miss a point or not listen as your mind starts to wonder. We find it difficult to make eye contact, so it can appear that we aren’t listening. We sometimes talk over people,or not realise it is our turn to talk. Occasionally we will think a conversation is over we will talk about something unrelated, in what is actually the middle of a conversation. None of these things are intentional, but they do create an impression – usually a poor one.

For many people with Aspergers, the best way to level the playing field socially is through alcohol. Alcohol at first can appear to be an excellent social crutch; it often removes the social anxiety that Aspies feel and when everyone around you is drunk, the social rules seem to become somewhat easier to follow and if I am honest, it is a social crutch that I myself have used with varying degrees of success for many years. But, Alcohol does have its downsides, not just the obvious health risks and hangovers, but also social – offending someone who is drunk is often takes a much worse turn than offending someone who is sober – in fact from my professional experience, almost all violent crime involves alcohol to some degree. For many people with Aspergers Syndrome, substance abuse often follows on from Alcohol abuse, as a simple means of suppressing symptoms and an aid to coping with the world around them.

Vulnerable:

  • Susceptible to physical or emotional injury
  • Liable to succumb, as to persuasion or temptation.

Trust is perhaps the biggest problem with Aspergers Syndrome. Most Aspies are too trusting. 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 or when people seem to be nice to us, it never occurs to us that they may take advantage.  These are logical subconscious assumptions, which come naturally to us; unfortunately, the world simply doesn’t work that way.

I have come across a several cases recently of someone with Aspergers Syndrome have been taken advantage of and there have been 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 these types of crime, as they simply don’t see it coming.

In cases of  Austistic Spectrum Disorder in general,  incidence of abuse (physical, emotional and sexual), is proportionately higher than average, and often is executed by authority figures. This is equally true of Aspergers Syndrome.

Typically there are several other social problems that People with Aspergers suffer with. We tend to have a natural sense of justice, and don’t typically follow controversial views, which depending on the social group can be problematic. We have special interests, which we feel free and easy speaking about, often without realising that most people are not interested. Equally, for many of us, sports hold little or no interest, which for male bonding can be a huge hurdle to overcome.

For adults in particular, experience of events like these can cause even more social isolation and worse still, a need to question the motives of everyone around them, making an already isolating condition far worse.

As children with Aspergers Syndrome 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, 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.

As I have mentioned many times before, the symptoms of Aspergers and the severity vary wildly from person to person, but to some extent, all people with Aspergers Syndrome are socially vulnerable, but unfortunately they often don’t get the help, support or advocacy they need to over come these problems, because in general the public still have little or no awareness of Aspergers issues.

Theresa May Equality Minister

Aspergers & Poverty – Silencing the unheard voice.

OK, So this is another UK-centric post today, for which I apologise.

The UK is a very diverse place full of mixed cultures and religions. During the past forty years or so various governments have passed different legislation against various forms of discrimination with varying degrees of success. On the whole we have made progress as a country. However, I think it is fair to say that we have a very long way to go yet. In parts of the country racism is still commonplace, women on the whole still earn less than men, homosexuality is sometimes viewed with intolerance,  a large disparity still exists between your socio-economic background and education and disability hate crimes still occur.

The previous Labour government passed a bill called the Equality Act 2010, which in essence took all these separate pieces of legislation and bundled them all into one package. As usual there were some improvements; arguably the odd backward step and it probably didn’t go as far as it could. This act – or at least most of it came into force on the 1st of October 2010, after the Labour government had been replaced with the Conservative / Liberal coalition.

One of the more interesting and progressive things covered in the Equality Act 2010 concerned a socio-economic duty. In effect this duty would force public bodies, such as local government to assess the impact of decisions they make on people from poorer backgrounds. Changes made to things like healthcare or education would have to be scrutinized and an impact assessment performed and considered before any final approval.

Theresa May - Equalities Minister

This socio economic duty didn’t come into force with the rest of the Equality Act. It was originally planned to come into force in 2011 to give the public bodies the chance to get policies and procedures in place to make this process as smooth as possible. However, recently, the new Conservative Equalities Minister – Theresa May has dismissed this specific duty as social engineering and political correctness gone mad and she has scrapped this duty.

So you may ask, why am I writing about this on a blog about Aspergers Syndrome?

Actually there is a link. A UK a survey undertaken by the National Autistic Society in 2008 showed that approximately 88% of people with Aspergers Syndrome and High Functioning Autism are unemployed. I am not going to go into the reasons for that now as I have covered them elsewhere. Aspergers Syndrome and Autism are very much hidden disabilities, and as such are currently poorly covered by disability legislation in the UK. This places people with Aspergers and Autism not only among the poorest members of our society, but also the least outspoken. When safety measures like the socio-economic duty are disregarded as unnecessary what does that say about the concern for vulnerable members of our society? And perhaps more importantly, who is left to ensure that these members of society aren’t completely overlooked entirely?

In the Video below – Liberal Democrat MP Lynne Featherstone who is Junior Equalities Minister completely fails to give any concrete plans to replace the socio-economic duty with anything superior or even anything at all that would give poorer people some hope of active equalities legislation.

To me equality means providing people with the same opportunities, and if a section of society cannot or will not speak up for itself due to its very nature, it does fall upon the governments shoulders to ensure that those unspoken voices are heard. Unfortunately, nobody seems interested in speaking for them.

ZenEmu