Friday 14 November 2014

What autism isn't (and what it is)

A lot has been done to inform and educate people about autism, but a lot of stereotypes still need to be challenged. As a person with an autistic spectrum condition – I have Asperger’s syndrome – I thought I’d share with you a few things I am not:

1. I am not a “retard”. The word itself is offensive anyway, and you shouldn’t use it to describe anyone. In addition, autism has got nothing to do with IQ. Some people with autism are extremely intelligent; others have developmental delays and very low IQ – and everything in between those two extremes. Autism may impair a person’s ability to function independently, but it does not mean they’re stupid.

2. I am not sick. Autism is not a disease, it’s a neurological condition. That means you cannot “cure” it, much like you can’t “cure” Down syndrome. I can develop strategies to help me function better and reach my full potential. However, if I am successfully doing this, it doesn’t imply I am “cured”. It just means I have learnt to adjust and thrive. 

3. I am not broken. I don’t need to be fixed or mended. My brain functions differently from yours and at times that makes it difficult for us to understand each other or get on, or for me to live independently. However, I am a whole person with a lot to offer. I can be given strategies to adjust to mainstream society. I would be happy if you too made an effort to try and understand my points of view and adjust to the way my brain works. If we both take steps towards each other, we’ll get along much better. 

4. I am not an “idiot savant”. As I highlighted before, autism and IQ are not related. Yes, some people with autism are geniuses in one or several areas – it can be maths, music, drawing or anything else. However, not all of us are geniuses. Don’t assume I’m going to pull some incredible intellectual skill out of my sleeve just because I have autism – trust me, I experience enough difficulties as it is without having to deal with painfully unrealistic expectations. 

5. I am not selfish or unsympathetic. I struggle to understand other people’s point of views. Body language, facial expressions, subtext, and implied or hinted meanings are very mysterious to me. This means I do not always understand or realise what emotions you are going through. However, if you make it plain and simple and tell me, you will find me very sympathetic and eager to help. I do care. I just don’t always have the tools to understand your emotions. Equally, because I lack the ability to imagine what you feel or think, I might not realise how my words or actions will impact you before it’s too late. I might upset you without meaning to. Yet, once I realise this, I will be mortified and very willing to make it right – possibly making things worse with my awkwardness. Please be patient with me.

6. I am not antisocial. Some people have told me, "How can you have Asperger's? You've got friends, you get along with people!"  While it is true that some people with autistic spectrum disorders have little interest in people and friendship, don't assume this is true for all of us. Some of us desperately want to make friends, but really struggle to do so (see point 5). Some of us have acquired enough social skills to make friends and socialize, even though it is often taxing (I avoid socializing in large groups because it exhausts me to interact with so many people and have to deal with so much information processing - my brain cannot cope). And most of all, those of us who have good friends are probably blessed to have met understanding, open-minded people who looked beyond our social akwardness and love us just as we are.

7. We're all on spectrum, aren't we? ... I should think not.

 I have become increasingly annoyed by people saying "We're all on the spectrum" (meaning the autistic spectrum) after describing one of their idiosyncracies.

To all you neurotypicals (i.e., whose brains functions in typical fashion, as opposed to autistic brains) out there:

- Being organised does not make you autistic. It just makes you, well... organised.
- Sorting out your socks by colour does not make you autistic. At best, it makes you slightly OCD.
- Getting annoyed by last-minute changes to a plan doesn't make you autistic. There is a difference between being annoyed by change, and experiencing significant anxiety and distress because of it.
- Being very focused on a particular task at a particular time does not make you autistic. Being unable to focus on anything else does.
- Preferring to be alone doesn't necessarily make you autistic. As I mentioned above, autistic people are not all antisocial.

If you don't experience significant difficulties in the areas of social communication, social interation and social imagination (and theory of mind), as well as sensory difficulties, you are not on the autistic spectrum; and by saying you are, you are belittling the difficulties those of us who really are experience on a daily basis.

2 comments:

  1. I really wish I had known this long ago dear! It is an important aspect in communicating with you. It does not define you by any means...but it certainly is a part of who you are and I completely understand all the things you speak of. Thank you for making these things more clear to people who simply have not a clue.

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    1. Thank you for your comment. This is one of the reasons I write this blog - to help people understand what it's like, living with an high-functioning Autistic Spectrum Disorder. I'm glad it helped you.

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