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.

Aspergers-disability or difference?

Amongst the Aspergers community online, there is a lot of debate as to whether Aspergers should be considered as a disability or merely as a neurological variation which may not be typical but certainly does not cause issues serious enough to be disabling. A member of the Facebook group “Adults With Aspergers Syndrome” suggested that I write a blog post on it so this is what this week’s post will be about.

My personal view is that it can be both a disability and simply a difference, depending on the issues it is causing. I have sat in meetings of Aspergers social groups where one person will describe it as a disability and another will point out that they don’t feel disabled in any way. For me, personally, it depends on how my general mood is. It is hard for me to view it as simply a difference when my anxiety level is so high at the thought of calling a taxi that I walk the 30 minutes home alone in pitch darkness instead (this happened quite a lot up to a couple of years ago but I am a lot better at calling taxis now). Trying so hard to understand social cues only to fail miserably on a daily basis certainly feels disabling to me. Not being able to follow 2 conversations at once without experiencing pain or distress IS disabling in a social situation. I guess this is the crux of the issue-we are only disabled when placed in situations that highlight our social problems. I think this is why academia appeals a lot to people on what is clinically described as the higher functioning end of the spectrum. Success in academia depends primarily on knowledge, a passion for learning and a good memory-all of which are attributes that a lot of people with Aspergers have. If you take a hypothetical person with Aspergers who excels intellectually and put them in a university lecture theatre, you will probably find that they like to answer questions, have a keen attention to detail, always keep to deadlines and generally do exceptionally well throughout their degree course and beyond-a model student. Take the same person and put them in a crowded social gathering and you might find that they appear completely different-anxious and agitated. Crowded social gatherings demand good social skills, the ability to weave in and out of different conversations, the ability to make “small talk” and the neurological ability to filter different sounds so that you only focus on what is considered to be the most important sound, the person talking to you, rather than also focusing on the ticking of the clock or the creaking of the door opening and closing every few minutes. This may not make much sense but what I am trying to illustrate is that, in the first situation, Aspergers is a positive aspect of this student’s life as it is enabling them to flourish academically. It is a neurological variation that works for them. In the second situation, the problems caused by Aspergers are likely to leave them feeling isolated and distressed and so, if asked at that time whether they considered Aspergers to be a disability, they would probably answer “Yes”. 

People with Aspergers find that there are a lot of positive aspects that their own specific neurological wiring brings to their life. A lot of people with Aspergers can be very logical thinkers and can see tiny details that others will miss in situations. This can lead to discoveries being made and problems being solved. Our experiences of growing up with limited expectations placed on us due to other people’s misconceptions of what Aspergers is means that most of us are extremely determined to achieve our goals and will not give up until they are reached, despite the depression and anxiety that can often be present in adults with Aspergers. I personally find that my own experiences of growing up with Aspergers have made me more willing to give people chances. I know what it feels like to be told that something is beyond me so I try never to say that to people although I know better than to give false hope too. There are things in life that are beyond the limits of certain people and that is normal-what I am saying is that people should try and achieve their dreams or goals a few times first before deciding that it’s beyond them, if that is the case.

I know that some people with Aspergers are so against the idea of being seen as disabled that they can show strong opinions towards those with Aspergers who choose to describe themselves in this way. My personal opinion is that it should not matter. There are valid reasons why someone with Aspergers may consider themselves disabled and quite a few of these reasons are related to separate mental health conditions that occur as a result of growing up in a world which our brains and personalities struggle to comprehend and fit in to rather than as a result of Aspergers itself. If someone suffers with chronic anxiety issues to the extent where they feel unable to leave their house or communicate with anyone, does another person have the right to tell them that they should not consider themselves disabled? If someone lives in a state of profound depression and is overwhelmed daily by feelings of self loathing and despair, does a person who also has Aspergers but has a more positive experience of it have the right to tell them that it is not a disability?

I conclude with a final thought-does it have to be one or the other? I believe that, in many people, including myself, both views can be present. Aspects of my Aspergers are disabling in certain situations or when I am in a low mood but, most of the time, I consider it as just a difference. It is simply the way my brain is wired and has been from foetal development (that’s what I believe anyway-I know there is a lot of theories about what exactly causes Aspergers and other conditions on the autistic spectrum but my belief in my personal case is that my Aspergers was present before birth). I didn’t have a choice in it and I didn’t have any control over it but it’s not such a bad condition to live with. Sometimes it does get me down but then everyone gets down over something in their lives-if it wasn’t Aspergers, it would be something else. My belief is that it is both disability and difference depending on context and societal attitudes. If people were more willing to tolerate our social mistakes and speak to us about them rather than isolating us after we make mistakes, we wouldn’t feel half as low as most of us do.

 

 

What a “meltdown” feels like

Disclaimer-this is a personal account of how I feel and behave when everything has become too much for me (which happens a lot less frequently now than it used to). Other people on the spectrum behave in different ways so I can’t speak for everyone. This content may upset some people but this blog is an honest portrayal of my life including the not so pleasant aspects.

Things start getting too much for me-it feels like my head is about to explode and my whole body tenses up.

I begin to get distressed-I just want whatever is bothering me to go away but it won’t.

I begin to subconsciously bite and pick at my skin. Logically, after the event, I know that this doesn’t help matters at all but, while it’s happening, I’m unable to stop.

I start screaming and sometimes throwing objects like a little child-the frustration is overwhelming.

Afterwards, I am exhausted and need to sleep for a few hours.

I wake up feeling embarrassed and ashamed-why do I have to do these awful things?

Then I am calm again until the next time something gets to me to such an extent.

People on the autistic spectrum do not choose to have what are termed “meltdowns”. They are a response to feeling overwhelmed, whether by social situations or sensory stimuli. They are different to temper tantrums-temper tantrums are used as a tool of manipulation-“meltdowns” are out of our control. The thoughts and feelings we are experiencing at these times are overwhelming and terrifying. I am extremely lucky in that mine are far less frequent than they used to be. Please spare a thought for someone with autism who is experiencing a “meltdown”-shouting at them will only make things worse. Support them through it and then work together to find out what triggered the event. For those who have the language to explain, this is relatively straight forward. It can be a lot more difficult with those on the spectrum who have no spoken language but, through a process of trial and error, triggers can be identified and, depending on what they are, eliminated or greatly reduced.

That’s it for today-I apologise if my writing is a bit poorer than normal-I worked a night shift last night and am still a little sleepy! Next Friday, I shall be back on form!

 

Auditory Processing and Aspergers

From what I have noticed, a lot of people with Aspergers and other conditions on the autistic spectrum, including myself, have difficulties with auditory processing. I find this aspect of our neurological wiring one of the hardest to explain to people who aren’t on the autistic spectrum. This is because a lot of people think that they know the extent to which we struggle with filtering sounds. After all, most people struggle to concentrate on a task when someone is talking to them and the radio is playing in the background all at the same time. However, personally, I think the difference lies in the effect it has on us. I will elaborate.

For someone who isn’t on the spectrum, dealing with background noise while trying to perform a task may be an annoyance and may make them feel frustrated. For those of us on the spectrum, the background noise can make it impossible for us to concentrate and be literally painful for our ears. I can’t deal with hearing more than one conversation at the same time-people notice that I can’t follow what they are saying because the other conversation is coming through to me just as clearly and the two conversations get jumbled up in my brain so I can’t distinguish them apart from each other. Apparently most people who aren’t on the spectrum and don’t have other neurological conditions that can cause the same issues automatically filter out other conversations so that their brain is focused on the one that they are having. I wish my brain had the ability to do that! When I was younger, different conversations going on at the same time would distress me to such an extent that I would shout over everybody else so that the conversation I was having was the only one, not because I was selfish and loved the sound of my own voice, as I’m sure many people thought, but because the confusion of different words and sentences getting mixed together in my brain literally made my head hurt! These days, I know that doing such a thing is considered by most people as socially unacceptable so I haven’t done this for several years now but I still find multi conversation environments highly stressful. It’s one of those things that autistic people tolerate because we realise that that’s how the world works but, believe me, it causes us a lot of stress and pain.

It’s not just different conversations and background noise occurring at the same time that makes it so difficult for us to focus on the information we need to process-a lot of other factors come into it as well. As mentioned on this blog before, a lot of people with Aspergers struggle to maintain eye contact with someone they are speaking with. We have to make so much effort to maintain eye contact during a conversation that there is no room left over for our brains to process what they are saying to us as well. That’s why it makes me angry when some misinformed teachers insist that a child cannot be listening or cannot have taken important information in if they have not given eye contact when the information is being given to them. For a child on the autistic spectrum, not giving eye contact to someone who is explaining a task to them is usually a good indicator that they have actually taken everything in and consciously chosen to process what they are hearing rather than risk missing out on vital information because society deems it a must to give eye contact and they can’t do both things at once. I cannot watch a TV programme if there is any background noise. I remember, a few years ago, getting so annoyed that background noise distracted me and prevented me from hearing the end of a fascinating documentary that I hurled the remote control across the room and unfortunately it hit my brother’s girlfriend! I cannot have a phone conversation while in front of a TV or computer screen or I miss the majority of what the other person is saying to me. Essentially I cannot multitask-I carry out single tasks with incredible precision but add a distraction in and I can’t cope at all! This is why an office environment would never work for me-every day is a sensory multitasking event for someone on the spectrum who has processing issues in that sort of environment. Of course there are times when sensory distractions occur in my workplace but they are a lot rarer than they would be in some other environments. When I am doing paperwork, I am just doing paperwork. When I am with a student, all my attention is on them. It’s a set up that really works for me.

I leave you all with one final reminder-please don’t assume that someone on the spectrum is just lazy or slow. Our brains process everything without a filter so it may take a while for us to get to the information that you have given us but we will get there. Daily life is not easy when you have issues with your auditory processing-please try and remember that. It will make the lives of people with autism so much better and only requires a little patience from others.

You know you have Aspergers when…

Disclaimer-this is intended to be a light hearted and humourous post. I am aware that not everyone with Aspergers will relate to all of these points but I felt my blog needed a bit of light hearted fun!

1. You know you have Aspergers when you don’t feel embarrassed about the things that most people think are embarrassing. I rarely get embarrassed and, when I do, it’s usually not about the same things that most people do.

2. You know you have Aspergers when you are always the last person to get a joke and, by the time you get it, everybody else has moved on!

3. You know you have Aspergers when people describe you as complicated and hard to understand.

4. You know you have Aspergers when you try out the social skills that always come naturally to other people and end up feeling really awkward because they just don’t work the same way for you.

5. You know you have Aspergers when the staff at your local pub or restaurant know what you are going to order before you’ve even opened your mouth.

6. You know you have Aspergers when you feel panicked at the fact that your “safe” meal options are not on a restaurant’s menu. What do I choose now?!

7. You know you have Aspergers when you express your emotions through stimming.

8. You know you have Aspergers when you can’t understand why obsessions are seen by the rest of the world to be a bad thing.

9. You know you have Aspergers when a packed night club is your idea of hell on earth. The stench of alcohol, the fear that people will vomit near you, all those sweaty bodies and the pounding bass music-why would I want to pay good money for that?

10. You know you have Aspergers when you are proud to be called a geek. Intelligence and being eager to learn are not qualities to be ashamed of.

11. You know you have Aspergers when you have zero fashion sense. If it fits and it’s comfortable, I’m good. Throw in colour coordination and my brain starts to hurt!

12. You know you have Aspergers when people describe you as “brutally honest”.

13. You know you have Aspergers when you can recite the script from a favourite movie or TV episode verbatim.

14. You know you have Aspergers when, as a young child, you read doctors journals for fun but couldn’t dress yourself properly. (The idea behind this one is that, due to issues with executive functioning, someone with Aspergers can be capable of reading material way beyond their chronological age but can struggle with the basics in life).

15. You know you have Aspergers when you seem to have no internal sense of temperature and thus wear thick coats in the summer, earning you a lot of odd looks from passers by.

16. You know you have Aspergers when you “tick” with animals far more than you do with other people.

17. You know you have Aspergers when people love having you on their quiz team!

18. You know you have Aspergers when you get anxious over the tiniest things and the anxiety just builds and builds until it becomes overwhelming and, when it’s all over,you can look at the situation and realise how little of a deal it actually was but you still go through the same thing next time.

19. You know you have Aspergers when you like reading random Wikipedia articles for hours at a time.

20. You know you have Aspergers when you don’t get why people get so bothered by difference. The world is a diverse place-why do people feel the need to get so aggressive towards people who are different from them but who aren’t harming anyone by being so? It’s a genuine mystery to me!