Dear Lucy, I have autism.

My biggest problem is People, not Asperger. 

“People with Asperger don’t suffer from Asperger. They suffer from other people” (Professor Tony Attwood). There is no one single aspect of Asperger which taken alone would have caused me miseries. I am content to be on my own and would be fine alone without human interaction. As Professor Attwood observes, the signs of Asperger disappeared if you leave someone with Asperger alone because in solitude with no one to talk to, there is no qualitative impairment in social interaction and no speech and language peculiarities.

The catch is human beings are born social animals and thrive on social connections. I hate the saying “no man is an island” but have to reluctantly agree with it. I wasn’t really bothered with my diagnosis at a time when my life doesn’t require much interaction with humans. It is only when humans enter the equation and intrude my life that I start running into difficulties. I don’t suffer from a heightened sensitivity to sound per se; I only suffer when the noise that comes from living in a city becomes too much and invades into my personal space. I take a longer time to process information; under the education system, this is stupidity. Hong Kong does have its charms with its choices of food and malls especially the underrated scenic countryside. If you are a fun loving and social party animal, you will love Hong Kong. My problem with this place is too many people, too much noise.

“I have autism”

Saying to people, “I have autism/Asperger” is not as easy as saying I have a fever or cold. Professor Digby Tantam explained in his book, “Autism spectrum disorders can be mysterious to people who are unfamiliar with them. This justifies some people treating people with an autism spectrum disorder with a lack of understanding, and a few people reacting with unkindness or even hostility.”

I know that the autism spectrum disorder is a diverse set of conditions with varying symptoms and severity, which I find complexing and therefore, I understand it is hard for people unfamiliar with autism to comprehend. Personally, I don’t mind what the other party says in respond to my revelation. For example, I can have someone telling me “I don’t look autistic” and I am perfectly fine with that response if I felt that person has listened and acknowledged my problems.

However, I take offence when people challenge my condition by imposing their standards on me or take my act of faith with a lighthearted attitude. When the other party tries to belittle or dismiss my problems as not serious because “Everyone has a problem”, it is a clear sign that the other party has not understood the nature of my problem. Autism is not something you could just snap out of regardless how common the problems are. It is also a fallacy to think that just because everyone has a problem, that makes my problem non-existent or unimportant. I also find it rude for people to pass judgments on someone else’s problems when they have never heard of Asperger, just found out about it, did a quick google and then believe they are qualified to pass judgments on the matter. I don’t expect the other party to know what Asperger is, all I’m asking is a listening non-judgmental ear. It is usually the attitude that the other party adopts rather than what is said, that offends me.

So what if you have Asperger? Everyone has a problem.

Personally, I hate responses that belittle the person such as, “Everyone has a problem” or “We all have bad days.” Firstly, it trivialises the problem. Secondly, it demonstrates a lack of understanding of autism. Thirdly, the reasoning, “because everyone has a problem, your problem is not a problem” is flawed. But why do people say things like that and why is it offensive to people with Asperger even though it is true?

It has been observed that all the features that characterise Asperger can be found in varying degrees in the normal population (for eg. needing time alone, sensitive to certain sounds or touch etc., anxiety, getting bullied in schools, difficulty understanding people etc.). This leads to a misconception that the problems complained of by people with Asperger are common and trivial and a tendency for outsiders to misunderstand the extent of the problem. Sure, there are people and noise everywhere. There is nothing unique about my problem and I feel bad precisely because I know everyone has to live with that same problem and I blame myself for not being able to get over it like the rest. On the other hand, it is precisely because this is something I cannot avoid which makes my situation ever more intolerable.

I questioned myself repeatedly: What is so unique about Asperger that demands better awareness? Am I merely a whiner? How should I respond to someone who thinks that just because everyone has a problem, Asperger is not an issue worth consideration? I can understand the difficulties of people not understanding what Asperger is but how can I explain my difficulties to them in a manner that they can understand? (Talk about no empathy! Why is it people have trouble understanding my problems?) I found the answer to my question on a Q&A clip with Professor Attwood,

“There is nothing about (the characteristics of) Asperger that is completely unique. It is the strength of it, the dominance in that person’s life and it is the pattern that is significant.” Professor Tony Attwood

In other words, it may be true that everyone needs time alone, is sensitive to certain sounds, has feelings of anxiety or gets bullied in school. However, in the case of someone on the spectrum, these problems are multiplied several fold (eg. needing time alone x 1000, hypersensitive to sound x 1000, anxiety x 1000, more likely to get bullied) and requiring x 1000 efforts to overcome.

Asperger and depression

I like to draw an analogy with depression, which is something I guess more people are familiar with, even if they don’t have it. It is also a condition that people with Asperger are susceptible to.* The fact that depression is common does not mean that it is something that should be taken lightly. On the contrary, the fact that it is common is a warning that we should take it seriously because depression can and does kill. Depression is the presence of sad, empty or irritable mood. True, everyone experiences these characteristics from time to time but to qualify as clinical depression requires more than that. It is therefore a mistake to tell someone with depression, “Everyone feels sad” or “We all have bad days” because clinical depression is more than having a bad day. It is persistent low mood accompanied by other symptoms. What separates depression from having a bad day is the duration, strength and dominance of the characteristics and how they affect the individual’s capacity to function.

Asperger is similar. The characteristics are common enough amongst the ordinary population but what separates the two is the strength and dominance of Asperger traits in the person’s life.

Imagine you are depressed and telling me about your insomnia and troubles in relationship. In reply, I said: “Everyone gets depressed. Many people suffer from insomnia too. At least you come from a well-to-do family where money is not a concern. I wish I don’t have to worry about money. You are so much fortunate compared to others, time will heal and you will get on by.”

If you’ve been truly depressed, chances are my response above would only make the situation worse as the last thing someone who is depressed needs to hear are words that are going to making them feel even more guilty or self-reproach. Even if a person is merely having a bad day, I will avoid judgmental comments such as the above especially if I don’t know the person well. It is not for me to judge whether or not someone is depressed and I believe everyone is qualified to feel depressed. The beauty of depression is that it doesn’t matter who you are ~ young or old; rich or poor, it does not discriminate. Depression knows no bounds and can get you regardless of your social status, cultural background, intelligence quotient, sexuality, nationality, beliefs etc.

Please be kind to one another as we don’t know what the other is going through in life.

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Dear Lucy, 

If the above still does not convince you that my problems are real, I only have myself to blame for choosing the wrong person to confide in. I should have known better than to believe that someone like you would understand.

 

 


*Support for people with depression can come in different ways, neurotypicals may seek support from social groups or engage in social activities. People with autism may have different needs. Personally, I think support can be as simple as respecting the needs of persons with autism to spend time alone. I had been told I was depressed because I spend too much time alone. No, I was depressed because I couldn’t spend enough time alone and had to deal with social prejudices from people who are too ignorant to understand autism.


Image credits:
PEANUTS Comic Strips, Retrieved from
http://www.peanuts.com/search/?pubdate=03%2F24%2F2006&sort_by=bydate&seasonal=&selectcharacter=&keyword=&type=comic_strips#.VuZZFox97L9
Snoopy [12 March 2015]. Five cents please [Facebook status update]. Retrieved from https://www.facebook.com/Snoopy/photos/pb.161564697227628.-2207520000.1457931773./922149271169163/?type=3&theater

References:
Tony Attwood, “The Complete Guide to Asperger’s Syndrome”
Tony Attwood Q&A, https://www.youtube.com/watch?v=0S9rPUNd2tk
Chris Bonnello, “You have autism? Oh, I’m so sorry.” Retrieved from http://autisticnotweird.com/oh-im-so-sorry/
Clay Marzo: Just Add Water Trailer, https://www.youtube.com/watch?v=ZXjNdTVNpMc
Steve Silberman, “Neurotribes”
Digby Tantam, “Autism Spectrum Disorders Through the Life Span”

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8 thoughts on “Dear Lucy, I have autism.

  1. what are the symptoms of asperger? how is it discovered? I had always been curious of when the issue become more serious for you as I once remember we used to be on meetup hikes together.

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    1. Was talking to a couple of friends over the weekend after dragon boat on depression …. one of our dragon boat team mate jumped off the building in Oct last year. He shows no signs and what so ever, it was too shocking for everyone. We were just talking about what can and cannot be said, medicines, etc.

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      1. Thanks for reading! A topic close to heart and I may need some time (days) to reply to your questions.

        Medicines may or may not work, depending on individuals. Personally, I think the sudden passing away of someone you know will always be a shock regardless how, and depression is “shocking” because it is not something you can tell from someone’s look and this is what I was trying to say in the post, you can’t judge whether or not someone is depressed from looks, background, social status etc. It can affect anyone.

        It is also my theory that we, as humans will never entirely learn to prepare for these “shocks” and will always find news like these hard to accept.

        From my little experience, if someone were to tell me his/her problems, I would listen. I think some people, due to their social nature, are very eager to reply or feel obliged to respond. People who say things like “We all have bad days” or “Look on the bright side” or “You should do this and that” may have good intentions but they might actually be making the situation worse. Personally, if I can’t think of a better response, I would shut up, just listen, don’t judge. Sometimes, people just want a listening compassionate ear.

        I might in exchange, share a story of my own, which may not have to be related to the person’s problem. I see that as a way of building our friendship and to let the other party know that our friendship is mutual.

        你的友好求你自愛
        然後你想誰未自愛
        一般定是俗套講請你看開
        只令你逃離舊友 怕誤解不改

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  2. That’s exactly what we were talking about, depression has a different nature for everyone. We all have families and ourselves went thru it, those that were in the discussion, so we were speaking the different flavors to get a sense of what is out there. Person A has reasons X and can be solved by approach K with traits of M, while person B can be totally different in another aspect. Some depressionist can talk about their issues, but don’t … so people around them that wanted to help, but can’t find out the fundamental issue/symptoms/cause/traits as the person never revealed, tries to “probe”, i.e. by giving examples to see if it is relevant/related; sometimes they don’t even mean to relate by attempts to see if it is possibility A, B or C. Why don’t they ask directly? Exactly, who knows if the person is interested in talking about it or not. Why the probers wanna find out? They are trying all possible method to help.

    By mentioning what might appear to be offensive or judgmental with or without relevance, highly likely because out of the 100% details of the issue, the sick one revealed only 1% of information. With that 1% of information, so much conclusion can be given, it takes a saint not to take the 1% of information and imagined the world as they cared enough to imagine. What I am trying to say it, it’s more than difficult for others not be offensive simply becoz usually information is hidden. For those who don’t care enough, they won’t even bother probing or relating or asking or responding. :o)

    That was the type of conversation we where having.

    haha, and i was probing with my previous comments. I admit, I wasn’t looking for a generic answer. :o) LOL

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    1. I don’t 100% understand what you mean. However to clarify, my post is about what not to say, specifically things that trivialises the problem. Of course, that is just personal preference/dislike. My post is not about probing. That is a different issue.
      As for probing, I understand you need to ask questions in order to know what’s the problem and how to help. Perhaps, the question is not whether or not one should probe but how to probe. Afterall, you need the other party to feel that you are someone they can trust, which is why I might offer to share a story of my own to create that mutuality. At the end of the day, you can only help those who wants to be helped.

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  3. Usually those who have been through a depression knows there is a highly likely end result of jumping off the building … that’s why they try their best to probe the issue as they don’t want to see others getting so close to what they have almost done.

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