Sunday, 17 June 2012

After diagnosis

There’s something that keeps getting my attention and I think it’s a sad thing. A lot of people get really sad after their diagnosis. This is usually due to terrible informing of the person who gave the diagnosis about what the diagnosis will mean to the person and what the diagnosis really is about. I’ve heard people talking about psychologists/psychiatrists (sorry about this, I always forget which of the two gives the diagnosis) who told them a lot of terrible things which weren’t true and/or psychologists who forget to highlight the upsides of Autism (or any other diagnosis for that matter) too. Sometimes people even simply get the diagnosis and aren’t provided any information at all and feel lost in the dark.

I get very upset every time I see this happening. It actually upsets me to the point of frustration. Seeing someone forget about who they are because of a label.
Some people argue that labels (in other words, diagnosis’s) should be discarded all together. I’m not here to discuss this, I’m just going to state what I think about it personally. My opinion isn’t necessarily the right opinion. I don’t think we should discard it. Not with the system the government has put in place at the moment anyway. A lot (not everyone) of people with a diagnosis need guidance in certain parts of their lives and most guidance can’t be applied for without a diagnosis. The paper works usually require a diagnosis. Even some professionals refrain from giving diagnosis’s, because they’re afraid of labelling someone for life. The problem with this, in my opinion, is that you strip away a lot of opportunities for the right help.

So I don’t feel we should be fighting the diagnosis’s. Even if you want to get rid of them, first make sure the system allows for the right help to be given without a diagnosis.
Again, this is just my opinion and is in no way the only opinion out there and might just not be the right opinion. I’m not a professional, I just base my opinion on experiences.

Back to the actual getting the diagnosis. People usually hear about the struggles people with the same diagnosis have and think that they have now been sentenced to a life of struggle.
Some people even get totally misinformed. There are websites and even professionals who claim things like ‘people with Autism can’t fall in love’, or ‘people with Autism never understand jokes’ or ‘people with Autism have no emotions’ or things like that. All of the above is false.

In my past my teachers and even psychologists and therapists and the likes have told me I couldn’t possibly have Autism, since I could make eye contact (most of the time I actually look between the eyes or at the forehead…), I understood some jokes, was capable of having conversations, didn’t freak out in a new class room and had a few friends.
Nobody ever looked at the amount of effort all of the above cost me. Also, not all people with Autism are the same. Aaron always says ‘if you’ve met one person with Autism, you’ve met one person with Autism’ and I agree. (Sorry that I’m quoting him so much. Remember, I’ve been following his blog for over 3 years and have taken some of his phrases for my daily life, so it’s hard not to quote him once in a while)

Now, how can we stop these dark times after diagnosis? After I finally got my diagnosis, I was actually very happy. In fact, I couldn’t wait to tell all my friends and was doing a happy dance all day. My mindset had a lot to do with this. I think my mindset on this subject can help a lot of people who have recently gotten their diagnosis and are very down about it.

Remember this: you don’t suddenly get Autism, you’re born with it. Now, what does this mean? This means you’ve had it your whole life. Your whole life you’ve been you and you’ve been a unique person with both good and bad qualities. Even with Autism, you even had the good qualities there the whole time.
Now, there’s a good chance (doesn’t count for everyone, but if this doesn’t count for you, then remember you’re still the happy person that you are, you didn’t change) that you went to get a diagnosis, because some things weren’t going entirely smoothly in your life and you didn’t understand why. Now someone has gotten you a diagnosis and you might see this as a validation of that you’re the odd one out. You’re the thing that’s wrong. Forget this mindset now!

That’s not what your diagnosis meant. You’ve been a unique person with bad AND good qualities and you still are. Then what DOES your diagnosis mean? It means you now know what is going on. You have been given a piece of the big puzzle that is you. It’s just one piece of everything that is you, it doesn’t completely define you. This piece completes the picture and helps you understand yourself. You can now explain both to yourself and to the world why some things are happening the way they are happening.

Now, why is this a good thing? Because you can work on it. You can start by identifying which parts of this new information about yourself have been troubling you and which parts have been helping you. Now you’ve identified this, you can start working on the parts that have been troubling you and you can develop the parts that have been helping you.

So, now we can answer the question of what a diagnosis really means and what has been changed after getting the diagnosis. The things that are there were always there. What has been changed is that you can now work with it. You can improve your life by working with your new information and, if necessary, get the help you need like guidance and things like that.

This is why I think a diagnosis should be celebrated. You haven’t been sentenced to a life of hardship. You didn’t suddenly catch a terminal disease or something like that. You have been given the first step to improvement: understanding. And (yes, another Aaron quote, sorry it just fits so well) through understanding comes hope.

1 comment:

  1. It's a shame how people start acting according to their diagnosis sometimes.

    I read a story about a woman (with a totally different diagnosis btw) who used to do everything, but after hearing she some sort of illness she stopped doing everything and just sat at home, because she read that people like her should take it easy..

    I don't think a diagnosis changes much, it's only there for explanations.