The Functioning Label Debate

The functioning label debate is one that occurs pretty much daily in the online autism communities I belong to. It is a complex debate but I feel it is worth discussing on here in order to enlighten people as to just how complex the autistic spectrum is and how separating it into two distinct functioning labels is not helpful.

The majority of people, including health professionals, view autistic people as either “high functioning” (which includes those of us with a diagnosis of Aspergers) or “low functioning”. They see it as a helpful way to describe how we “function” in society. However, one of the biggest issues with these labels is that it shapes in a very narrow way how people view us. As one person in an online group for people on the spectrum wrote recently, “All it does is dismiss the weaknesses of those who are seen as high functioning and, with people who are seen as low functioning, it dismisses their strengths”. I thought this was a very succinct and accurate way of putting it. What a lot of people who aren’t on the spectrum and don’t have a lot of experience with people on the spectrum don’t understand is that actually a lot of instinctive behaviour in autism is very similar, whether someone is classified as high or low functioning. The difference is that those of us who are labelled as high functioning display learned behaviour which those who are classified as low functioning cannot always learn in the same way because they often have severe learning difficulties. Almost all of my behaviour is learned-the only time you will see my instinctive behaviour is when I am stressed or very tired. Most people on the spectrum who can get by socially do so because they are essentially “parroting” the behavour that they have learned people want to see. To me personally, there is no gaping chasm between myself and my students who are classified as “low functioning” in terms of the way we process things and the way we perceive our environment-the only difference is that I have years and years of learned behaviour and I don’t have learning difficulties whereas they primarily display instinctive behaviour and have severe learning difficulties.

I can imagine people thinking now, “But it’s about more than that! You can speak and type-that makes you high functioning”. Yes, in your terms, it does. I am thankful every day for my verbal ability-it allows me to explain myself and to explain how I perceive the world to other people. However, just because someone with autism may not communicate with speech, it does not mean they have nothing to say. There are lots of autistic people out there who type extremely articulately and eloquently but who are classifed as “non verbal”. Speech is not the only method of communication. Yes it is the easiest for most people to understand but there are so many other ways of communicating-sometimes you just need to look for them. I would also like to point out one thing-just because someone with autism has the ability to speak, it does not mean they can be understood. People continually misunderstand what I say when I am speaking to them verbally-it’s like there’s a block between the thought in my mind and what comes out of my mouth. I can speak but I can’t always communicate in the way that people expect me to be able to. Also, like a lot of people on the spectrum (and probably quite a few people not on the spectrum), I lose the ability to speak during times of extreme stress or emotional turmoil. When this does happen, those of us who are described as “high functioning” get no understanding for this temporary loss of verbal ability. Most people seem to be of the opinion that, as we can usually speak, we are choosing to be awkward and should just get over it and speak.

This brings me nicely onto the other problem with functioning labels. As mentioned before, being labelled as “high functioning” leads people to dismiss your weaknesses and being labelled as “low functioning” leads people to dismiss your strengths. I have come across so many people online and in real life who have been told that, as they are intelligent, they should find a way to “grow out” of their autism. This to me highlights a real ignorance as to what autism is. It is not an intellectual disability although a lot of people with autism can have learning difficulties too-it is a difference in our neurological wiring. It comes back to instinctive behaviour again-I can learn so many coping strategies in order to live my day to day life but I cannot change my instinct. Similarly, those people with autism who are labelled “low functioning” are so often simply seen as a list of negative symptoms and weaknesses when they have so many strengths. When eloquently written books and blog posts are authored by such individuals, people are amazed. They assume that, because someone presents with severe autism, they are incapable of communicating or of sensing the world around them when, in fact, it has been proven that most people with autism are highly observant people who notice everything and particularly pick up on people’s attitudes towards them. All of us are so much more than a functioning label and these labels can really damage us. When people who are seen as “high functioning” fail to get or keep a job because of their communication difficulties or fail to pay their rent on time because they have executive functioning issues, we are offered no understanding. If we try and explain where it went wrong, people accuse us of using autism as an excuse. Their belief is that, because most of the time we can function in society, we should be able to function at exactly the same level as they do. Unfortunately, the autistic spectrum is a lot more complex than that. Someone can be “high functioning” in one environment with the right level of understanding where they are at their most comfortable and that same individual can be “low functioning” later that same day in an environment that is not suited to their comfort, such as a busy supermarket or crowded train station. People with Aspergers are just as prone to meltdowns as people who are diagnosed with severe autism. The only difference is that we are often simply viewed as being awkward when we can’t cope with circumstances any more because people fail to grasp the difference between learned behaviour and our instinctive coping mechanisms.

Please remember that the person with Aspergers who you know is often simply acting in order to be socially acceptable. We do this because we know that that’s what society expects but, over time, it takes its toll and is exhausting because it doesn’t come naturally to us. Please let us have our coping mechanisms at the end of a long day trying our best to fit in. We are all more than functioning labels. They may be useful to certain sections of society in order to target services but, when it comes down to it, we are not labels-we are humans and, like all humans, we differ on a day to day basis. What we come across like in one situation is likely to be completely different to how we come across in another situation, like everyone. Please don’t assume that those of us with Aspergers don;t have our own issues and struggles. We may not have learning difficulties but our ability to function in academic terms has no bearing on how much stimuli we can tolerate in everyday life. Conversely, please don’t assume that someone with severe autism has nothing to offer. Respect their methods of communication and you will get a lot back. You need to try and view autism through our world, not yours. I know it’s very difficult which is why I set up this blog in the first place. I hope that people can see just how complex the spectrum is and not to take someone’s functioning label as a be all and end all. If you google “I am Joe’s Functioning Label”, it will take you to a fantastically written blog post detailing just how damaging these labels can be. I hope this post has made people think about how complex a topic this is-please see us as us, not as functioning labels.

Aspergers and Bullying

Although bullying has been briefly mentioned in a few of my previous blog posts, I have never dedicated a whole blog post to the subject and a friend of mine suggested that I do so as people on the autistic spectrum are highly prone to bullying so I thought I’d give it a go. This post is based on my observations so it won’t resonate with all of my readers with Aspergers but I hope it explains a bit.

I think pretty much every person with Aspergers has lived through bullying of some degree. This can range from incidents of name calling to severe physical abuse and everything in between. It seems to be a fact of life for many people on the spectrum but why exactly is that? I think there are a few reasons.

Firstly, and probably most obviously, those of us with Aspergers behave differently to people without the condition as we process the world around us in a unique way. A lot of us, myself included, are physically as well as socially awkward. We pace, we flap our hands, most of us see life from a very literal viewpoint, we can’t regulate the volume of our voices and we struggle to make friends in the context of the school playground. All of these traits make children with Aspergers an obvious target for bullying.

Secondly, a lot of people with Aspergers, myself included, display strong and extreme reactions to things, particularly things that distress them. Bullies love to get a reaction and people with Aspergers will usually give them one. Yes there are some people with Aspergers who seem to have the ability to remain calm in stressful situations-I am unfortunately not one of them. I fall in the category of people with Aspergers who have mood swings that can be triggered by the smallest of things. Other people are very perceptive of how easily people with Aspergers react to being teased and like that reaction and so provoke it more. This is often a vicious cycle which can go on for years if not promptly dealt with. People with Aspergers can also be liable to misinterpret other people’s interactions and respond in a negative way which can then make them targets for bullying.

Thirdly, this is not true of all people with Aspergers but those of us with Aspergers who respect rules and like to stick by them are often viewed as the “teacher’s pet” when they are at school and “teacher’s pets” are more likely to be bullied by other children.

Fourthly, our social awkwardness goes against us a lot in life. People who are socially awkward, whether they have an Aspergers diagnosis or not, are more liable to be the focus of nasty jokes made at their expense. Some people with Aspergers don’t have the level of social understanding to know that they are being teased. Others, like myself, are perfectly aware of the fact but do not know how to deal with it. We need the support of other people and a lot of people with Aspergers don’t get that valuable support.

The above points are focused around school but, as most of us know, adults can be bullied too. The traits that make someone liable to bully another person-the need to boost their own power and unhappiness in their own lives-are not exclusive to childhood. I have read many accounts online of adults with Aspergers being bullied by their bosses in the workplace or by their neighbours or even their relatives. The huge question is how to deal with bullying before it wrecks your self esteem and leads on to mental health problems such as depression and, in severe cases, Post Traumatic Stress Disorder. I have seen the results of years of bullying and they are not pretty.

Like most human beings, a lot of people with Aspergers are bad at taking advice when they are in a specific situation. We know logically that responding to taunts by crying hysterically or smashing something and then storming off just provokes more bullying but, in the situation, that all goes out of your head. I used to get extremely annoyed when people would tell me, “Just don’t rise to it!” It is 100 times harder to ignore someone who is teasing you than to react in an extreme way. Many people with Aspergers feel alone when they are going through bullying but I promise you, there will be at least one person in your life who cares about you and will want to help you through the horrible situation you are in. Some of us with Aspergers find it almost impossible to communicate verbally when we are distressed or when we feel the topic we want to discuss is embarrassing. If you find it easier to communicate in writing, write your confidante a note or send them an email or a text message. Cyberbullying is a massive area now and incidences of it are increasing all the time. If you are being bullied online, tempting as it may be to engage in responding to the taunts, block them and report them to the relevant people and to the website itself. A lot of people with Aspergers are prone to depression and bullying in its many forms just makes this 1000 times worse.

Above everything else, PLEASE DON’T BLAME YOURSELF. . A lot of us on the spectrum have low self esteem and a distorted self image of our personalities which comes from growing up in a world that is not designed for those who think differently. Bullying only fuels these cruel misperceptions we have of ourselves and it’s ever so easy to think you deserve it but you don’t. Nobody has the right to make another person feel bad about something that they were born with and something that is intrinsically part of them. You have a unique viewpoint on life and that is something that the right people will celebrate and admire rather than deride. If it is at all possible, surround yourself with the people that love you for who you are rather than those who seek to humiliate you by focusing on your weaknesses instead of your strengths. Life is too short for dramas and conflicts. I know, in the midst of a bullying situation, it can feel terribly hopeless but there is always hope. Reach out and confide in someone and concentrate on the small things in life that do make you happy. When you are feeling emotionally drained, focus on your special interest or anything else that will occupy your mind in a positive way and act as a plug for the spiral of negative thoughts that a lot of us are prone to. You will get through this and go on to better times-I am living proof of that. You are special and you are worth something, no matter how often bullies try to make you believe otherwise-always remember that.

Aspergers and Dealing With Confrontation

This is a topic that I have broached in certain blog posts before but I figured I would dedicate a whole blog post to it as it is a very important aspect of life.

As somebody who is very passive, I absolutely hate and fear confrontation. I see no point in it and it intimidates me. I try and do everything in my power to avoid it. I have to say I usually succeed in avoiding confrontation but there is a big downside to this. The downside is that, when people actively do everything in their power to avoid confrontation, they tend to be treated in ways that other people aren’t because they tend to find it harder to stick up for themselves. In my opinion, the world shouldn’t operate like that and it is a huge shame that people take advantage of other people who don’t want to cause a fuss. It has happened to me a lot over my lifetime. The annoying thing is that, logically, I know that not standing up to these people increases their ego and gives them an inflated sense of power and allows them to continue being rude to people but that logic does not translate into action for me. I know exactly what I would like to say to them but I just can’t get the words out of my mouth. I know that, once the initial confrontation is over, such people would be likely to be a lot more polite in future once they know I won’t stand for their rudeness but it’s the initial confrontation that I fear so much.

I know that there are many other people both with and without Aspergers who are similar to me in trying to avoid confrontation but I think the lack of knowing how to deal with such people is indicative of the social skills deficit that is a major part of Aspergers. There are, of course, people with Aspergers who have the opposite problem-they get into confrontations all the time. I personally don’t think there are many people with Aspergers who fall somewhere in the middle of the spectrum when it comes to how they interact with people. I believe this is a major reason why people on the spectrum are so liable to being bullied, which is a topic I will focus on in next week’s blog post.

It is the few people that do occupy that area in the middle that I hope end up reading this blog post as I would really welcome some advice from someone with Aspergers who has managed to master the most difficult social skill of all-how to be assertive without being aggressive. I am not saying that I don’t welcome advice from those people without Aspergers-I do. I just think that, in this situation, I would benefit most from advice from someone with a similar neurological makeup to me. Aspergers is a neurological difference and it means that the way we master certain social skills is completely different to the way that people without Aspergers do. I have had numerous people tell me that I need to learn how to stand up for myself more but I can never actually work out how to make that first step. If you have Aspergers and you are able to stand up for yourself and be assertive without being aggressive or abrasive, please let me know how you manage to do it and how you managed to do it the first ever time. I am sure that many other people with Aspergers will benefit from your advice besides just me. If you can help, please leave a comment in the Comments section. Many thanks!

Does The Cause Of Autism Really Matter?

Disclaimer-this post may come across as controversial to some. I know, for some parents whose children have just been diagnosed as being on the autistic spectrum, finding out what may have caused their child’s condition is important to them as a key to understanding how autism works. It is not my intention to cause offence to anyone but this post contains my personal views which will, of course, differ from some peoples.

As someone with Aspergers Syndrome, I keep up to date with autism research. As such, I have read lots of articles querying the cause of autism. Over the years, the speculation about the factors that cause someone to be autistic have changed. Initially, in the 1960s and 1970s, the “refrigerator mother” theory was common. The speculation was that autism was caused by mothers not being affectionate enough so the children never learned how to display affection. This is, of course, an outrageously inaccurate and now discredited theory that caused emotional distress to lots of families who wrongly believed that they were to blame for their child’s autism. Not much was known about the condition at the time-if it was, professionals would have realised that children with autism can be and often are very affectionate in their own ways, which often differ from how neurotypical children display affection.

Then, in the 1990s, the MMR (measles, mumps and rubella) injection became the scapegoat for the rise in autism diagnoses during this decade. The doctor who carried out the research study claiming to show a link between the MMR jab being given and the child developing autism in the days and weeks following this has now been struck off and the research has been discredited but the belief that the MMR jab causes autism is still common and is a very damaging one. Now that parents are so worried about their child developing autism that they are turning the MMR jab down and either opting for single immunisations or not vaccinating their children at all, cases of measles in particular have increased hugely over the past few years. Measles, of course, brings its own set of life changing effects if not treated promptly-blindness, deafness, neurological damage and, of course, death. Yet so many parents refuse the MMR jab because they are terrified that their child will end up autistic, even if the brain damage that their child risks through a measles infection will be more damaging to that child’s life than autism would (if autism was caused by the MMR, which I don’t believe). There is one main reason why I don’t believe that autism is caused by the MMR. Autism is something that an individual is born with. It may not be immediately apparent and, indeed, one of the reasons why the MMR is suspected in lots of autism cases is because it only becomes apparent in some children when they reach the age of 18 months to 2 years, which coincides with the timing of MMR jabs. The reason why it only becomes apparent in some cases at this age is because this is the period of development where social skills and play skills really start developing, the skills that people with autism struggle with. However, I have come across parents online who, looking back after an autism diagnosis, will recognise symptoms of autism in their child when that child was less than a year old, long before the MMR jab was given. There is a rare condition on the autism spectrum referred to as Childhood Disintegrative Disorder or Heller’s Syndrome where individuals go through a period of typical development in their early years and then suddenly lose the majority of skills they have learned and regress noticeably.
I think that the majority of children whose parents believe that the MMR caused their autism probably have this variant of autism and the loss of skills coincides with the MMR jab being given. This is not to deny that, in some children, reactions to vaccines can be severe and can cause life changing effects-I just don’t think autism is among those. It is very easy, when dealing with a condition as complex as autism in all its various forms, to put the blame on one particular thing. I know there are people reading this who will disagree with me on this and believe whole heartedly that the MMR vaccine was responsible for triggering their child’s autism but I don’t personally have faith in that theory. Vaccine damage can occur but who knows if that child or those children would have been autistic anyway?

Skip forward to the current day and there are a myriad of suspected factors in autism development. The following news articles are just a few with different ideas of what could be behind the rise in autism diagnosis.

One point I really want to make is this-does what causes an individual’s autism really matter? My belief, backed up with my own research, is that autism and all its variants are primarily genetic, hence why we are neurologically hardwired in a certain way. I believe the cause behind most of the traits of autism is our sensory processing differences. Most of the behaviours and problems with social skills can be traced back to the unique way in which we process information. I do think that, with certain individuals, there are also environmental factors that combine with the genetic factors to result in autism-a traumatic birth or repeated infections in infancy. However, I also think that there are a lot of individuals with brain damage who display traits that are so similar to autism that their condition gets diagnosed as autism. It is important to remember also that, in lots of cases, autism is a symptom of an underlying condition rather than someone’s main diagnosis. Really, does it matter what may have caused somebody’s autism? It cannot be changed so focus on the positives and learn from your child’s autism-they can teach you a lot. What matters is that everyone on the spectrum receives the support and understanding they need in order to fulfill their potential and be happy, regardless of what is behind their autism, which is likely so varied that it is different in each individual. I am not putting down the research as I know a lot of time and effort went into it but sometimes we need to forget the science and just focus on the fantastic individual who needs your understanding.