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.

Top anxiety triggers for people with autism

As you probably know if you've been reading my blog, I have Asperger's syndrome, which is an autistic spectrum disorder. Today, something happened at work that reminded me of how fragile I can be, and I decided to share what happened and how it affected me.

I had just begun my shift. It was early in the morning and I was putting fresh loaves of bread on the shelves. All of a sudden, a loud hooting sound resonated behind me.

It made me jump. It made my heart race and my head swim; my hands became clammy. It brought tears to my eyes and a sudden feeling of rage rose in my chest. I turned around and saw my colleague standing on the forklift truck, laughing. He realised straight away I was upset and shrugged, "Smile, it was just a joke!"

A joke isn't funny when it's at someone else's expense. As it happens, loud, sudden noises cause me a lot of anxiety, and it can affect how I feel for the rest of the day. Here are the top 3 anxiety triggers for people with autism - people like me.

1. Uncertainty - not knowing what is happening or what is going to happen, or not knowing what is expected of us. You may know that people with autism need routines. What you may not know is that this is not just a preference. When something unexpected happens, we feel completely at loss, and we panic.

Most daily rules and routines change because of circumstances, but people with autism really struggle with that. For instance, you may have forbidden your autistic child from going in the laundry room because you don't want them to touch the washing machine. But today, your child has been playing outside and their clothes are covered in mud, so you take them straight to the laundry room to undress. The child will not understand why they're being taken in a place that is forbidden. The resulting tantrum or lack of compliance is not a display of bad behaviour, but a display of deep anxiety. You need to either stick to the rule, or, if your child has enough understanding, explain how, under those circumstances and under your supervision, they may come into the previously forbidden room.

2. Social interactions. We may struggle to understand social cues (or even language) or to communicate appropriately. Or, if we have been trained to act in the socially appropriate way, it still doesn't come naturally, and the effort is exhausting. If we have to interact with people we don't know well, or not at all, we have the extra stress of not knowing how that person will act. Social norms that we find difficult may be imposed on us. For instance, in my area, most people like to greet each other with a peck on the cheek. Refusing to do so is considered as rude as refusing to shake hands (something that many autistic people don't like, either!). Yet, letting someone touch my face requires trust, so I feel really uncomfortable when colleagues or regular customers insist on greeting me in that manner. I daren't refuse because I don't want to be rude, but it makes me feel anxious and stressed.

3. Sensory issues. Most of us are highly sensitive to light, noise, or touch. Sudden, loud noises cause me physical discomfort or pain, and set me on edge for a long time. So do unexpected touches - people may touch my shoulder in what they mean to be a friendly manner, but if I do not expect it, I will jump. Always make sure an autistic person is fine with you touching them before you do so - and by the way, should not that apply to everyone? My body isn't public property. I am the only one who should decide when it's OK for someone else to touch it.

People with autism struggle with things that most people take for granted. Please, keep those things in mind.

Dawkins and disabilities: what makes a life worthwhile?

Unless you've been living under a rock, or - like my mother - are blissfully unaware of what's going on in social media, you've probably heard about Richard Dawkins' infamous advice on Twitter to people expecting a child with Down's syndrome: abort it and try again. He later qualified his statement, but still insists that bringing such a child into the world is immoral, " based upon his own moral philosophy which in turn is based on a desire to increase happiness and reduce suffering."

This story strikes a nerve with me for two reasons.

For a start, I have a disability myself. I have Asperger's syndrome, which is an autistic spectrum disorder. Yes, it does make my life more difficult or even more painful at times. Does that mean I would rather not be alive? Of course not. Besides, happiness is not necessarily the absence of suffering. Of course, circumstances affect our happiness, but they do not necessarily crush it: if it were the case, people who are poor or ill would never be happy, yet this is simply not true (I'm not going to discuss how the pursuit of pleasure can actually impair our capacity for happiness today, though). And I know my parents love me just as I am, despite the difficulties they've had with me over the years.

Actually, I'm not the only person with an autistic spectrum disorder who's responded to Dawkins. The lady who mentioned the dilemma posed by learning your unborn child has Down's syndrome asked him where he'd draw the line, since she has an ASD. He replied "People on that spectrum have a great deal to contribute, Maybe even an enhanced ability in some respects."

I think that argument is flawed. Firstly, someone's contribution to society does not determine the worth of their lives, and that is very fortunate. How do you decide whose contribution is worth keeping? Besides, you cannot possibly know what contribution a child will make (or not) before they're even born. This guy has Down's syndrome and his contribution is pretty amazing, and he is only one example of the many things people like him are capable of. Moreover, people with ASD do not necessarily have enhanced skills. Some of us are highly intelligent, other of average intelligence, and other stills have severe developmental delay. Some have incredible intelligence but their autism is so severe that they cannot unlock their potential. None of this, however, is a criteria for the worth of our lives.

Which brings me to my second point. I used to work with children and teenagers who had various learning disabilities, including Down's syndrome - and some disabilities that are a lot more profound. Many of them had severe and complex developmental disabilities. They could not feed themselves, they could not talk, they could not walk. Does this mean their lives were not worth living?

Each one of them had a personality and a smile. A smile, do you understand what that means? A smile that says "I am happy to be here with you", "I am happy to see you". They had their likes and dislikes; they responded to people and situations in different ways. They felt the same emotions you and I do.They expressed happiness, fear, or frustration and cause people around them happiness, sadness, or frustration, just like we do. Who are we to say that their lives are not worth living? Since they can show enjoyment of certain things, dislike or distress of others, it demonstrates they feel the same emotions we do, even if they can't articulate them like we can.

Let me tell you about Gary (named changed). Gary was one of those children. I was blessed to be his key worker for 4 weeks. I got to know him and Gary had the happiest, liveliest personality you could imagine. When he smiled, it looks like the sun was radiating through his face. He would clap his hands in mine and laugh quietly. I could tell he was happy to see me. Gary passed away when he was 15. I miss him. I loved that boy very much. He was a human being and he had just as much a right to live as anyone else.

Mr Dawkins' statement leans towards eugenism, and that's evil in my books. I don't think we have the right to decide for another human being whether their life is worth living or not.