My thoughts on people claiming children can grow out of autism

One opinion I have come across rather a lot lately in autism groups online is that children can grow out of their autism once they become teenagers or young adults. This opinion is mainly held by parents who claim that their children have grown out of their autism. The most famous recent example of this was Toni Braxton claiming that her 13 year old son Diezel no longer displays symptoms of autism (my IPad is funny about hyperlinks but Google Toni Braxton autistic son and you’ll get several articles about it come up). However, I have also come across a couple of adults online who claim to have grown out of their autism and say that, if they were to go through the diagnostic process today, they would not get a diagnosis of any autistic spectrum condition.

Let me clear something up before we go any further-autism can not be grown out of. It is a neurological condition which means our brains are hard wired in a certain way that gives rise to the symptoms of autism. Every individual is different but, while outward manifestations of the conditions on the autism spectrum will differ from person to person, the neurological make up is similar. I do maintain that people who do not have the associated severe learning disabilities that can be co morbid with autism can learn social skills the same way that someone without autism can learn regular skills. This is how I learned the social skills I have-through years of hard work and many mistakes. This does not mean that I have grown out of my Aspergers though. It doesn’t take much for me to forget these social skills-if I am tired, stressed, anxious or not feeling well, my brain cannot access these as they are not natural to me and so people who haven’t seen that side of me before where I am unable to communicate verbally or blurt something out impulsively find it hard to match that person with the person they normally know me as. I am constantly working at 100% to be socially acceptable and the irony with that is that, when you work so hard to fit in with the world, people can be very unforgiving when you do have a bad day and suddenly, as the quote goes, “my autism starts showing”. It worries me that these children who have apparently grown out of their autism are putting themselves under immense pressure to fit in socially and, as such, are not given enough recognition that they do still struggle and, from experience, this can lead to a vicious cycle of low self esteem and self loathing because it feels like they can never truly be themselves. I feel a lot happier when I have an outlet for my stress, such as stimming. After a long day at work, I usually stim for at least 30 minutes uninterrupted and, after that, I feel calm enough to attempt to sleep. I know some autistic people who have been shamed out of stimming, either by relatives or by professionals such as teachers, and feel like they have no outlet for the stress that comes from having to constantly monitor your behaviour in order to fit in as best as you can with society.

I also maintain that people usually grow into their autism rather than grow out of it. Autism is a lifelong condition and, like any lifelong condition, over the years, you learn to live with it and you learn coping strategies. Many people with autism who are sensitive to noise, for example, really struggle as young children and can have very public meltdowns due to over stimulation but, by the time they become adults, they have learned which steps to take to avoid over stimulation such as headphones or ear defenders or ordering shopping online rather than going to busy supermarkets. People who have severe learning disbilities alongside their autism also learn, over time, how to regulate the auditory input they receive from the environment. A lot of autistic people make their own unique vocalisations which often serve to block out other auditory input by making that noise the loudest input they are receiving. We need to respect other people’s coping strategies. As long as it is doing us no harm, why force them to stop, creating more anxiety and distress? If someone flaps their hands to calm themselves down after holding it together all day, respect that and don’t try to stop them from doing it. I have never seen personally why hand flapping is considered so socially unacceptable by some. I can think of so many things that I would consider socially unacceptable but wider society deems perfectly fine but they can’t tolerate seeing someone flapping their hands. It’s one thing I really don’t get.

People with autism also benefit from extensive support (where available). This support can enable them to fulfil their potential but it doesn’t mean they are no longer autistic. I benefited hugely from the social skills sessions I attended in secondary school but I am still autistic. Yes, as a child, in home videos, I came across as very noticeably autistic (lots of hand clapping and running around in circles) and now, as an adult, I just come across as shy and socially awkward to most people (unless they work in the autism field) until you get to know me a bit better but that’s down to years of hard work. Another thing I find ironic is that, with the recent Government cuts, a lot of autistic children in both mainstream and special schools are having their support reduced precisely because they have benefited so much from that same support. It just doesn’t make sense to me.

I find it interesting that most people believe that the people who have grown out of their autism are the extroverts. Toni Braxton claims that her son is now a “social butterfly”. Whilst there are a lot of people with autism who do present as socially awkward, conversely some of the most charming and sociable people I know are autistic. The media has done a lot of damage by portraying autism as introversion. Yes, a lot of people on the spectrum are introverts but there are lots of extroverts on the spectrum too and also a lot of introverts who are not autistic. It is not impossible for people with autism to make friends or to keep them. It is stereotypes like this that can do so much damage to our community. I have read accounts from women who have gone for a diagnostic assessment only to be told that they cannot be autistic because they made eye contact with the psychiatrist who was assessing them or because they are married. One man was told that he cannot be autistic because he works full time as a highly paid professional. Prejudice is still very much in existence when it comes to autism. There are still far too many professionals who believe that autism is a childhood condition and that, if you weren’t diagnosed before your 18th birthday, you’re obviously not autistic. People whose autism is not picked up until adulthood often have mental health issues such as depression from working so hard to fit in and never feeling like they can truly be themselves.

Lastly, misdiagnosis can and does happen although it is nowhere near as common as some people would have you believe (mainly the people who believe autism is just an excuse for poor parenting but that’s a whole other topic!) I once came across someone on an autism forum that had never experienced a meltdown or shutdown, never had obsessions, was very adept at reading body language and social cues, had no sensory issues, did not have any urges to stim and strongly felt that they had been misdiagnosed which we all agreed with but I think he was a very rare case. If anyone truly feels they have a diagnosis of an autism spectrum condition but do not have any of the symptoms any more, I would suggest speaking to your Doctor or the person who diagnosed you as you were most likely misdiagnosed. Although I have changed a lot since my initial diagnosis, I know that I would still receive the same diagnosis today if I went for a reassessment because my brain hasn’t changed since my last assessment. Well actually I would now be given a diagnosis of Autistic Spectrum Disorder Level 1 given that Aspergers has now been absorbed into the spectrum as a whole which, in my opinion, was the best thing that could have happened but that’s for another day!

So Toni Braxton’s son, unless misdiagnosed in the first place, is still autistic. Given that I don’t think she ever accepted her son’s condition in the first place (she was quoted as saying that his autism was a punishment from God for a previous abortion-it’s pretty distressing to know that some people still consider autism or other disabilities as punishments), I think her eagerness to assert that his autism has now vanished is related to that. More than likely, Diezel, like most teenagers on the spectrum, has devised his own coping strategies and grown into his autism. I am sure he will grow into a fine young man who hopefully accepts his condition and works with it to achieve his full potential.



Isolating Aspergers versus accepting Aspergers

In my years of living with Aspergers, I have come across a plethora of attitudes towards the condition, both from people on the spectrum and others who have varying levels of experience with the condition. One aspect of attitude towards Aspergers is whether or not you isolate it or accept it as part of you/the person with Aspergers you know. Isolating it is a term I use, rather than a generally recognised one. What I am referring to is treating Aspergers as a separate entity, something that can easily be distinguished from one’s personality and, as a consequence, usually something that is easy to blame when things go wrong.

I am the first to admit that, depending on my mood, I swing between isolating Aspergers and accepting Aspergers. During a highly emotionally charged meltdown, I once even posted on Facebook that, if my Aspergers was a person, I would punch it in the face. However, once I had calmed down the next morning, I could see that this strength of feeling had been impulsive and provoked by the meltdown I had been in the midst of. The simple fact is that Aspergers is a significant part of who I am-always has been and always will be. Yes I sometimes wonder what I would be like if I didn’t have the condition but, as I have gotten older, that has decreased a lot because I realise that it is a somewhat pointless exercise because, no matter how many hours I sit there wondering how different I would be if I didn’t have Aspergers, my neurological makeup and the way my brain is wired is not going to change. It influences the way I think and the way I perceive language every day which is why I consider it a significant part of my life and why, when I am emotionally stable, I accept it.

I often find that accepting it is the happiest option. When you can accept Aspergers as part of what makes you you, it becomes one less battle to fight. We have enough struggles in life without being constantly at war with our brains. I also think it’s important to remember that everybody faces their own issues and struggles in life, whether they are autistic or not. Try not to blame everything on Aspergers, which I have seen some desperately unhappy people do. I suppose that brings us to one main point in all of this-depression makes it so much harder to accept Aspergers as part of your life. I have often found that, when people list why they would want to be cured from their condition, the things they list are often associated with depression-an overwhelming sense of hopelessness and despair. Depression is something I would say, from experience, a lot of people on the spectrum struggle with. The world favours sociable people and most of us are not all that sociable. Plus we see the world differently and the way we view the world is not usually catered for. If it was, certain noises, sounds, smells and textures wouldn’t exist and it wouldn’t matter if people looked at you when they were talking to you or not. I have often found that, with other people on the spectrum I know, once the depression is under control, their outlook on Aspergers is much brighter. It’s the depression that needs to be treated.

Aspergers is not a monster or a demon. It is simply a different neurological makeup. It brings unique strengths as well as weaknesses. Yes, if I didn’t have it, I might be a bit more sociable and a bit less socially awkward but I might also have lost my ability to speed read, which I have always found to be a real strength. The truth of it is that I can’t tell what I would be like because Aspergers is so intertwined in my life that I can’t tell which aspects of my personality are down to Aspergers and which aspects I would always have had. What I guess I’m trying to say is does it really matter? I am not against self improvement but there is a difference between wanting to be the best you can be and the type of self hatred that I see all too often in the autistic community. I often find we bully ourselves more than anyone else has ever bullied us. Sometimes I find that evaluating the situation logically is the best way forward. Yes we have our issues but everyone does, whether autistic or not-their issues may be different but they still have their battles to deal with. Our lives would not suddenly be perfect if we woke up one day and our condition had vanished overnight. Everyone has little blips now and again but, if you feel like you hate your condition all the time, please seek help as it is most likely influenced by depressive thinking which DOES need treating. Remember the positives and remember your strengths-everybody is unique and the world needs all different types of minds.

“Doesn’t everyone do that?”

First of all, I hope everyone had a great Christmas and I wish you all a Happy New Year as my next blog post will be in 2014!

My blog post this week was inspired by a post on another autism blog which is fantastically written and hugely touching (see here- Reading this blog post was like reading the story of my life. I empathise completely with the frustrations this girl feels and I often feel the same as she does when people dismiss Aspergers as insignificant. Reading the post made me realise that the time was right for me to write about this issue on my own blog. I had been debating writing about it for a while but this finally inspired me on.

I know that this post is one of my more controversial ones but I feel that it is an issue that needs exploring. I will start by saying that I understand the reason behind why many people explain away traits of Aspergers Syndrome as something that everyone experiences-it is the way that a lot of people attempt to understand the complexities of the Aspergers mind. People have a tendency to rationalise everything that they come across in terms of their own experiences-they meet someone with Aspergers who explains about their social difficulties and make the comparison to a time when they felt shy and awkward at a social occasion-to them, that is similar but, to someone with Aspergers,it’s an insulting comparison. Just because I understand where the phrase “Doesn’t everyone do that?” comes from, it doesn’t mean that I don’t find it hugely frustrating. As Autistic Chick mentioned in her blog, the key is in the words “frequency” and “severity”. To return to the social difficulties scenario, there is a huge difference between feeling shy and ill at ease for a brief period of time at a social occasion (which happens a lot to everybody but the most socially extroverted people) and feeling so anxious around other people that you feel physically sick, have anxiety attacks and count down the time until you can retreat into your own safe environment once more. This, of course, is not to say that everybody with Aspergers has such a sense of dread at social occasions (indeed, I always try and attend social gatherings so that I have shared experiences to reminisce about with friends but I still struggle in environments where I don’t know people and tend to stick to the people I do know at such occasions) or indeed that everybody who isn’t on the spectrum does not experience anxiety at such occasions but it serves as a good highlighting point for how extreme our difficulties can be, It is hugely frustrating when I explain to people about Aspergers only to be met with platitudes such as, “Oh, but everyone does that!”. It is an insult to everyone on the autistic spectrum to be told that our difficulties are not worthy enough of a diagnosis.

Aspergers is a difficult condition to live with and classic autism even more so. Everyday life can be very confusing and frustrating and I often feel like challenging those people who believe that autistic traits are shared by everybody and so aren’t worthy of any understanding or special consideration to live inside my head for 24 hours. I believe that they would understand at the end of that 24 hour period just how extreme my symptoms can be and how hard I have to work to appear “normal” so that I maintain a successful career and relationships. They would understand that there is a difference between being slightly apprehensive and nervous about doing something they find difficult and the sort of anxiety I experience where I cannot focus on anything else, become increasingly emotional and tearful and end up picking compulsively at the skin on my hands with both my fingers and, on occasion, my teeth as well. They would understand that there is a difference between being a little socially awkward and not being able to read the body language of someone stood right in front of you and therefore missing social cue after social cue. They would understand why my emotions fluctuate so much and why I need solitude on a daily basis, even if the only time I can achieve such a state is at night once I return from work and can have 30 minutes of uninterrupted reflection time before bed. Most of all, they would be able to see just how much I think over things and analyse them all the time. My mind is constantly thinking and analysing and I find it hugely difficult to completely relax. I understand the importance of socialisation and I am blessed to have very special friends who understand the way in which I interact but I also understand the need that a lot of us with Aspergers have for “alone time”. It is this part of society that frustrates so many people with Aspergers-why are people so concerned about the way we socialise? We would be fine if we were allowed to interact in our own way instead of being urged all the time to “be more social”. Society seems to favour the extroverted and those who are more introverted in nature, whether they have Aspergers or not, are often made to feel like they need to improve the way they interact with other people when, in fact, the world needs all kinds of people to function. 

I believe one of the positives about having had people claim that Aspergers traits affect everyone so many times over the years since Aspergers has been publicised in the United Kingdom is that I know how it feels and therefore would never say anything like that to people with other conditions such as Obsessive Compulsive Disorder (another condition that seems to attract the good old phrase, “Oh, I do that too!”). I know that my Aspergers has given me the traits of rigidity and obsession alongside a love of and indeed craving for routine but I also know that my experience with these traits in no way relates to someone with OCD and I know that to suggest such a thing would be insulting and dismissive of the problems that it causes them on a daily basis, the same as it is for those of us on the spectrum when people claim that our symptoms are nothing to worry about and that they are not worthy of a diagnosis.

My final statement is this-please, please consider how it might make someone with Aspergers or OCD or depression or anxiety feel to hear that their symptoms are experienced by everyone. I know that people may think that it is comforting for us to hear that our traits are shared by a lot of people in wider society but it feels incredibly dismissive and it also feels like we are being accused of over dramatising our symptoms when that is the last thing that we would think of doing. I don’t want my mind to be a tumultuous roller coaster of emotions and neuroses but that is (metaphorically) the card that life has dealt me so I have to deal with it as best I can. We need understanding, not dismissal and we need compassion, not rejection. 

Hyperfocus and obsession

One trait that is shared by a lot of people on the autistic spectrum is that of being able to hyperfocus on something which is fascinating to us. When I am interested in something, I can spend up to 10 hours at a time obsessively researching it and everything related to it. I believe that it is this trait that allows us to retain so much information about our obsessions and spend so much time on them.

A lot of people who aren’t on the spectrum don’t fully comprehend the level of concentration and time that we dedicate to our obsessions. I have met a lot of people who say that they are obsessed with something-a particular TV show or a band, but actually can’t retain half as much information as I would be able to if I was obsessed with the same thing. I guess it’s a fundamental difference between how people on the spectrum class as an obsession versus how people who aren’t on the spectrum class it.

Several people have asked me in the past how I can concentrate on researching something for such an extended period of time. My answer is that I see it from a different perspective. To most people, researching topics seems tedious and boring (and indeed I find research boring when it is based around a topic that I have little or no interest in) but, to me, when I am researching a topic that I am obsessed with, I don’t see it as work-I enjoy it and see it as fun. I can get so absorbed in what I am researching that hours can go by between when I look at the clock. Even in the days before wireless Internet, I used to spend hours poring through Mothercare catalogues memorising all the different models of pushchairs available in their High Street stores. I was six years old when I had this obsession and I could hold my concentration around the topic of pushchairs far longer than the average six year old.

Hyperfocus can also be a highly useful trait in the field of academia. When I was interested in the topic of a particular essay, I never needed to spend a little bit of time on it each day-I would just research it avidly and then write it in about an hour and a half. I know that the same can’t be said for everyone with Aspergers and that some people with the condition really struggle to focus themselves academically but, for some of us, hyperfocus is a gift that enables us to achieve well academically.

I want to push the point here that hyperfocus is not solely the preserve of those of us on the higher functioning end of the spectrum. It may present itself in a different way in people who are more severely affected by autism but it is still there. The stereotypical example of a child with autism spinning a particular object for hours on end-that is an example of hyperfocus. They get so “in the zone” that hours can pass with them still doing the same activity. Yes, this would be classified as a self stimulatory behaviour but the sheer length of time they dedicate to this activity indicates hyperfocus and it should be understood as such. Just because it may not be seen as beneficial to the world in the same way that an autistic lecturer’s knowledge on his or her specialist subject is, it does not mean that their ability to focus on something for an extended period of time should be doubted. 

There is also what I call the negative side of hyperfocus and this is when it is related to something that you actually have little interest in. An example from my personal life is the tendency that my mind has to hyperfocus on emotions and analyse all the previous occasions when I have made social mistakes and then realised them later. My mind will hone in on one particular incident and go through it in exruciating detail. This is what I refer to as “over thinking” and it is the part of the personality that causes depression and anxiety in a lot of people with Aspergers. There is actually no scientific proof that it is related to the trait of hyperfocus but that’s what I believe from my personal experience.

Overall, though, I love my ability to hyperfocus on topics which are interesting to me. It means that I never get bored as there is always something to be done. I can spend entire days reading topics on Internet forums and blogs that many may view as time wasting but, for me, it is a hobby and one which I enjoy immensely. I just need to learn how to rein it in sometimes!

Please consider that obsessions you may simply view as a waste of time and energy are enjoyable to people on the autistic spectrum. They may be stranger than the average hobbies but that does not mean that you have the right to mock people for being interested in them. Obsessions often stop people on the spectrum from feeling miserable and this is a viewpoint that I have seen a lot online. Nobody has the right to take away somebody’s source of happiness as long as it is legal and harmless-please remember that next time you want to take somebody’s obsession away from them.

An open letter to those who are struggling to accept their Aspergers

Once a week, I check my blog statistics. One of the statistics given is the terms that people have typed in search engines to reach my blog. Two of these terms made me feel disheartened and upset-these were “I have Aspergers and hate my life” and “Aspergers never proud of myself”. A family friend suggested, on hearing this, that perhaps my next blog post could be an open letter to the people who are struggling to accept their Aspergers and I thought this was a good idea so here it is.

To whomever typed such terms into a search engine and was directed to my blog, I hope that the content helped you realise that, just because you have Aspergers, it doesn’t mean that you have to live in misery and despair. Everybody in this world, including you, is unique and special in their own way. Human life is a beautiful thing and should be appreciated and celebrated. I know that sometimes it can feel like the world is conspiring against you but you CAN achieve. The fact that you continue with your daily life every day in a world that is not designed for someone with your neurological makeup and, indeed, can be incredibly harsh on those of us on the spectrum, is a testament to the strength of your character. You are strong and you can get through this.

There is no denying that Aspergers can be a very hard condition to live with. I often feel like offering people a day in my head so that they can understand why I react in certain ways to certain situations and why I am tired a lot of the time because my mind never switches off. I am constantly thinking all the time about the tiniest, most trivial things and it leaves me mentally drained. However, EVERYONE with Aspergers and on the wider autistic spectrum has positive aspects of their personality. We live in a world that places a huge emphasis on social performance-how well we can make small talk, how well we can influence people, how many friends we have in our social circles and how popular we are. It is not surprising therefore that, judged against such criteria, those of us with Aspergers often fall short because we have social and communication difficulties. However, much as it may be hard to believe, the world isn’t all about being social. Some of the most compassionate people I have met, people who make a real difference to the lives of others, are on the autistic spectrum and struggle socially. If you care for other people, you will always be appreciated, even if people don’t always show it in the way we might expect them to. What I have noticed about a lot of people on the spectrum that I have met is that we struggle with social skills but are instinctively kind and have a strong desire to help people. Social awkwardness does not make you a bad person. It can make life really, really hard at times (believe me, I’ve experienced this frequently in the past and still do today), but, inside, you are unique and have just as much right to be proud of yourself as anyone else out there. You should be proud of yourself for achieving the things that you find challenging. Someone who has always been sociable and popular will, more than likely, not be aware of how just going into a shop and paying for a packet of crisps or a drink with the interaction that such an encounter involves can feel like climbing Mount Everest to someone with Aspergers. To me, learning how to take the train was a massive achievement. What other people don’t even think about caused massive issues for me-the worry that the train would not be on time, the worry that the train would be cancelled, the worry that I’d board the wrong train-the list of potential anxiety triggers is endless for someone on the spectrum. My proudest transport moment to date was flying alone from London to Trinidad to stay with an old friend of mine from university-I was extremely nervous dealing with Immigration officers and airport staff on my own but I got through it. What I am trying to point out here is that, even if you think there is nothing in your life to be proud of, think of the achievements that others would consider to be small and consider how long it took you to master them and how they made you feel once they had achieved it. I think a lot of people with Aspergers, including myself, do have a lack of self confidence that is pervasive across all areas of our lives. Therefore, we need to take confidence in the smallest things so that we eventually have enough confidence to try and tackle the big things.

I don’t want anyone reading this to come away from my blog with the impression that I am preaching to you from a position of ignorance. I know how it feels to not have any belief in yourself. I know how it feels when you think the whole world is against you and that you are the worst person ever. I know how it feels to be trying your hardest in a social interaction only for it to fail, when other people socialise as naturally as they breathe. I know how hard it is to go through life in a world where, the more effort you make to conform to the endless social rules in order to be accepted by people, the less tolerance people have for the social mistakes you do make. It is because I know how it feels that I wrote this post. If I did not have any experience of these horrible episodes of depressive thoughts, it would be hypocritical of me to write such a post. I have now reached a point in my life where I am (usually!) happy with how my life is going and I can look back at the low points in my life and evaluate them logically. However, there are still issues. I evaluate how nice I am as a person by the fact that I am not racist or homophobic, do not knowingly discriminate against anyone and would never intentionally hurt anyone but, other than that, I don’t consider myself someone that people like to be around, even though, logically, I know this is untrue as I have people who want to  be around me. What I am trying to say is that it is a hard journey to free yourself from negative and self loathing thoughts but it is one that you need to undertake for your own wellbeing. Whether that is through the form of counselling or informal talking with relatives or friends, please take that first step and admit that you are struggling-somebody out there cares enough for you to hate the fact that you are feeling this way.

I know that a lot of people with Aspergers who have depression seem to think that, if they didn’t have Aspergers, life would be perfect. This is not true. I know that it often feels true and I have been guilty of having that same thought myself but EVERYONE on this earth has their own personal hang ups and issues that they are fighting against, even the “popular” people. For a lot of people, it’s their weight or their height or their academic ability but there are hundreds of things that have the power to upset people and get inside their minds. People have different defence mechanisms against these hang ups. A lot of people turn them into something to be laughed at-a good example is the hypothetical guy who is overweight who constantly makes self deprecating jibes about his weight. I’m sure we all know someone like this hypothetical guy. It is worth remembering that, just because someone’s issues cannot always be seen, it doesn’t mean that they don’t have them. We have a name for our particular pattern of issues but that does not mean we have the monopoly on depression and anxiety.

My final comment for people with Aspergers or on the wider autistic spectrum is this-you are all unique, wonderful people. You may not think it right now but your life has a purpose and you have so much potential. What really helped me was using my experiences to write this blog and educate and help people on a global scale. Think about something you can do which uses your Aspergers or even just your life in general to help others and I guarantee that, in time, your self esteem will improve little by little. I still have a LONG way to go before I can say that I have a positive level of self esteem but I am getting there and you can too.

My final comment for people who aren’t on the spectrum is this-I hope that this post has shown you how sensitive people with Aspergers are to their perceived failings. We know that we struggle socially-we don’t need reminding unless it is going to be in the context of helpful advice on how not to make the same mistake again. A lot of people with Aspergers have incredible long term memories and the times when we have been made to feel that we are rubbish or weird come back at inopportune times to haunt us and make us doubt ourselves again. Please remember that we are usually our own harshest critics so we don’t need any more external criticism. If you know someone with Aspergers who is struggling, reach out to them and  offer friendship and tolerance-you will make their lives so much better.

Self esteem and Aspergers

Self esteem issues are very common in people on the autistic spectrum, from what I have noticed. Indeed, self esteem issues occur with most learning, neurological and physical disabilities-basically anything that society sees as odd or different. In this post, I hope to explain the issues that low self esteem causes in people with Aspergers in particular.

The primary reason that most people with Aspergers, including myself, have self esteem issues, is due to bullying and people not being willing to make allowances for our social mistakes. Personally I have never met anyone with Aspergers who did not experience bullying in their school years and often beyond. Being socially awkward identifies us as targets in the playground. The fact that a lot of people with Aspergers are also physically clumsy doesn’t help matters at all. I always found that certain aspects of my Aspergers made me more sensitive to childhood bullies than other people. One example is the fact that I am a very literal thinker. Until a couple of years ago, I couldn’t understand that people would say spiteful and malicious things that they knew to be untrue just to hurt somebody’s feelings. I always assumed that people were just being honest and genuinely thought that I was ugly or a freak. If you are told something enough times, you internalise it and it becomes part of your self image. Many children with Aspergers are miserable in their school years-they are often isolated and excluded from playground games. If the only reaction your peers have towards you is to walk away, how are you supposed to develop a healthy self image of yourself as someone who is nice to be around? Of course, having these sorts of self esteem issues lead, in turn, to low self confidence, particularly in social situations where you feel that others will be judging you and looking for your flaws so that they can take great pleasure in pointing them out and ridiculing you for them. This compounds our social awkwardness and thus the vicious circle continues. At almost 27, I am still suffering from the effects of experiences I had before anyone even knew that my difficulties had a name, I still have days when I think the world would be a better place without me in it although, thankfully, these days are now few and far between. I always say that, until you have looked in the mirror and genuinely despised the person staring back at you, you will struggle to understand just how pervasive and destructive low self esteem can be. This is something that not a lot of people realise I struggle with as I tend to keep it to myself in my off line life,

Also a lot of people with Aspergers have a high level of self awareness and I count myself in this group. Whilst, in ways, this is a positive attribute to have, as it has enabled me to find a number of coping strategies to minimise the negative impact that Aspergers can have on my life, it also means that I am my own harshest critic. I am fully aware of how I come across to other people and of the weaknesses that I have and this means that I can often have a tendency to be incredibly harsh with myself if I don’t reach what I see as “typical” social standards. I see my friends socialising and envy the ease with which they can do so. Over the years, this has led me to become rather despondent and, although my social skills have improved immensely since my diagnosis, with the help of social skills sessions and patient friends and relatives, I still berate myself at times for the fact that I still have weak social skills. I try to remember at these times that Aspergers is a social and communication disorder and therefore it is amazing that I have made the progress that I have within the context of my diagnosis but this doesn’t always help and I just have to wait for the low mood to pass.

The final main reason for low self esteem in those of us on the spectrum is perhaps the most damaging one-it is the fact that there are people out there who wish to take away the essence of our beings and “cure” us. I wrote about this in detail in my “Cure Debate” post so I won’t go over it again too much but suffice to say that, if you are aware that every little quirk and habit you have is scrutinised and labelled as an autistic trait and thus something to be “dealt with” and, in some cases, punished by the use of aversive therapies, you don’t exactly feel good about the way that you are. If you spend your whole life aware that people disapprove of the way you are and think it would be better if so much of your life simply vanished, you’re not exactly going to feel like you have a right to be happy and to be proud of the achievements you have made. I know that a lot of people involved in the cure debate will argue that they want a cure primarily for classic autism rather than Aspergers but my point remains that it is still damaging to someone’s self esteem to want to change so much of their personality. As I mentioned before, I support attempts to make the lives of people on the spectrum more enjoyable by minimising the negative impacts of autism on their lives but this is completely different to the idea of curing them for the reasons that I have mentioned in my post on that debate.

Now we come to the devastating point of all this-the impact that having such a poor self image can have on peoples lives. A very high number of people with Aspergers have mental health issues such as depression and anxiety as described on the National Autistic Society website.

As a member of several Facebook groups for people with Aspergers and an online community for people on the spectrum, I have also come to know that there is a worryingly high number of people in the Aspergers community whose childhood memories are so distressing that they fit the diagnostic criteria for Post Traumatic Stress Disorder. It is also a depressing fact that people on the autistic spectrum are more likely to commit suicide than those who are not on the spectrum. Indeed, some reports have cited that, in children, those with autism are up to 28 times more likely to take their own life than those without autism as discussed on this blog by Lynne Soraya.

These are the people who go through life feeling rejected at every turn, who are turned down from jobs and are then made to feel bad about themselves for having to rely on financial assistance from the State when, if they were given a chance to prove themselves in the first place, they would be able to hold down a job, who spend their days despising who they are and wishing for a tiny bit of relief from their racing thoughts and who take their feelings out on themselves in a variety of ways. These are the people who society often views as “outcasts” but, ironically, the reason why such “outcasts” exist is because society is so fixated on the “typical” that it shuts out those who it deems not to meet its arbitrary standards.

Next time you see someone with Aspergers or autism, please remember how they may be feeling inside and have compassion for them. We struggle daily to get by in a world which often seems to revel in making us feel like failures and sometimes just a small amount of kindness can make our day so much better.