What is Autism?

Autism is a neuro-developmental condition. This means that the brain developed along different lines, and that you are born with autism and will have autism for your whole life. Although the central difficulty is an inability to intuitively understand and relate to other people, the condition is much broader in scope than a mere social impairment. In fact, autism affects how a person relates to their whole environment and how they make sense of  the world in general.  

Autism is experienced in a multitude of diverse and unique ways, and this is why it is called a spectrum condition. It is important to understand that once you have met one person with autism, you have met one person with autism.  This person might be extremely different to another person with the same diagnosis, and this is why it is important to suspend judgement and not form any assumptions.

Autism can occur with or without a learning disability or serious mental health problem. This means that some people with autism can live relatively independent lives (although they might still need a lot of support to achieve this), while other people with autism might need supervision for most activities all through their life.

The vast majority of people with autism also experience some degree of sensory sensitivity. In my own experience, sensory sensitivity is by far one of the most disabling features of my autism. My sensitivity to noise affects sleep and concentration, and it causes extreme tension and anxiety. Sensory sensitivity heavily overlaps with many of the social, attention, and cognitive  difficulties that are common in autism, and should really be considered a core feature of autism. It has thankfully been added to the latest diagnostic manual for autism, in line with its ubiquity and global effects on a person’s life.

Asperger’s syndrome is essentially autism without a learning disability (although many people with Asperger’s have specific learning difficulties, such as dyspraxia, dyslexia, or dyscalculia). People with Asperger’s are also verbal, and sometimes they can be very articulate. For example, I  can be very verbally expressive, and I  can talk at length about subjects that I am interested in. However a flair for language can conceal difficulties in understanding the hidden meaning in other people’s communication, both verbal and non verbal.  Subtle messages that are conveyed by people’s facial expressions and tone of voice can be completely overlooked, and metaphors, jokes, irony and sarcasm can be baffling and anxiety provoking. Because the person with Asperger’s can appear to be very communicative and eloquent, their communication difficulties can easily be overlooked by other people.

What other people can do to make life easier

Sensory issues

It is important that other people are aware  of possible sensory issues and make reasonable adjustments so that the autistic person can be productive and stay on task. Always ask the autistic person what sensory issues they might experience. If they are sensitive to noise, they might benefit from wearing noise cancelling headphones while they work. People with autism might be bothered by noise that does not affect other people, and even relatively low level or quiet noise can be distracting. For example, people chatting, the clicking of fingers on keyboards, car noise, lawnmowers, and creaking floorboards, can all make it very hard for me to concentrate. If it is possible, let the person work in a quiet space slightly removed from other people, facing a blank wall so that there are no distractions.

A  room that is too hot, or conversely, too cold, can be anxiety provoking and distracting. For example, I feel tired and become inefficient if I have to work in a stuffy, centrally heated office, with no natural air flow. A reasonable adjustment here might be to leave a window open near where I work. But another autistic person might have the opposite problem and not like the incoming cool air, and this is why you need to get to know the person and what works best for them. I also find  that the noise and air that comes from air-conditioning can be very distracting, particularly if the machine is affixed to the ceiling directly above where I am sitting. Particular types of perfume can also be distracting.

Mild autism does not exist

Avoid assuming that a person’s condition affects them in a ‘mild’ way just because they appear to be coping. By adulthood, people with Asperger’s have often become very good at masking or camouflaging their difficulties and  emotions. This means that they can use their intellect to work out the more basic social rules, and can put on a socially acceptable act, which can be an adaptive coping strategy because it helps them to avoid ridicule. This is why Asperger’s is often ‘invisible’ to other people, because the person can appear to be very able and articulate. They might make eye contact and attempt conversation. However, this surface sociability can conceal their difficulties, which can be experienced in a very severe way by the person concerned.  The person with Asperger’s follows a heavily rehearsed social script, that has been learnt in a rote manner. The person will not have the instinctive social awareness that most people possess, and what might seem common-sense to others is not necessarily understood by the person with autism. Masking autistic behaviour, and trying to act in ways that are unnatural for the person with autism, is stressful and tiring. Therefore masking can negatively affect the person’s mental health. It can also mean that other people are less understanding when they do  commit a social faux pas or misunderstand an instruction, and it can mean that important reasonable adjustments are not made. So be aware that many autistic people do not conform to the stereotypical image that you might read about in the media. The stereotypical representation is usually an exaggerated caricature, and emphasises autistic behaviour as opposed to internal experience.

Communication style

Autism can make it harder to process verbal instructions and spoken language. There can be a processing delay. For example, it can take me some time to work out what someone is trying to tell me, and to unlock the meaning within their words. This processing delay is more pronounced when I am in a busy and noisy environment. Also too much information can be confusing. Face to face conversation can be stressful because there is too much sensory information to process, and when I am stressed I am less likely to be fully receptive to what the person is trying to say. I am far more likely to understand what someone is trying to get across if they write down the instructions or key points from a conversation. I can then refer to what was talked about on my own, at my own pace, when I feel more relaxed and not so pressured or overwhelmed.

When speaking to someone with autism, it is important not to speak too fast. Repeating key points can be helpful. I often need to have things repeated before I fully understand something, so I might need to ask a few questions. If someone with autism asks a lot of questions do not get impatient or cross. They are not doing this to be awkward, and it does not mean that they are not fit to do the job. It just means that you might have to make more time to explain things. Also it is important to use exact language, and to be precise at all times. This is particularly important when you are issuing instructions. Don’t assume that the person will infer your meaning from informal instructions. For example, instead of saying ”give everybody a copy of this”, say ”make 3 photocopies of this and give one each to this person, this person, and this person”. Another example is that if I am asked to put an item in a particular place, a vague pointing of the finger to the location will not be sufficient. I will need to be given the full details of where the item belongs, and it might take me a while to process the instruction. Do not assume that someone can remember where something goes or what to do just because it has been explained before. Again, you will need to be patient, and non-judgemental, and understand that the person is not being non-compliant, but genuinely finds these things very difficult because of their neurological disability. Many people with autism, myself included, have very low self-esteem because they often face ridicule and a  lack of understanding. Therefore, if a person with autism completes a task incorrectly don’t criticise them, but instead explain tactfully and clearly what they have done wrong and set out exactly what they should do instead. Many people with autism are perfectionists and really want to do a good job, so regular feedback and reassurance can be very helpful.

People with autism can find it hard to make eye contact. There can be an awareness that eye contact is expected by other people, and so the person might try their hardest to make eye contact. However, making eye contact, or even looking at the face, can be very distracting and painful because of visual sensory sensitivity.. When I try and look at someone for a prolonged period of time because I feel that this is expected of me, I find it increasingly difficult to hear and make sense of what they are saying. Therefore, just because someone with autism appears to make good eye contact, do not assume that they do not have a difficulty in this area. It can be helpful to allow the person not to make eye contact in face to face meetings. Do not assume that someone is being rude or up to no good if they don’t look you in the face. It is likely that far more information will be retained if the person is not expected to make eye contact. I would argue that this is one of the kindest reasonable adjustments that you can make for someone with autism.

Small talk can be difficult for people with autism. It can be hard to maintain conversation and there can be many awkward silences. You might need to take the initiative and lead the conversation, and try not to take it personally if the autistic person does not have much to say. Conversely, if the autistic person is very interested in something, they might want to talk about the subject in great depth. Autistic people won’t pick up subtle hints that they might be talking too much, so you need to be very clear and concise, while not getting cross or angry. The autistic person is not always aware that they are breaking a social rule, or the compulsion to talk about an interest can be too powerful for them to ignore.

Because of the social difficulties, an autistic person might find after work social events such as Christmas parties very overwhelming. They might not be be able to attend these events, and this is not because they are antisocial  but because of the extreme stress that these events can cause.

Anxiety and frustration

People with autism are often very anxious. The anxiety of the day can build up, and it might just take an apparently small trigger, or final straw, for the person to reach breaking point. When the stress has got to this point the person will need space to calm down. They might need to leave the building and go for a walk to get some fresh air, or just sit alone for a while. It is best to leave the person alone and not try and follow them. It is often the stress of being around other people for too long that can cause the outburst in the first place. After the incident you can talk to the person about what happened, although the person might prefer to explain their feelings via email or a letter. Be aware that people with autism can have problems understanding and expressing emotions. For example, I can be very anxious while not showing obvious signs of anxiety because I am very good at covering up how I feel. So do not assume that someone is okay just because they have a smile on their face and appear to be calm. Many people with autism hold on to their tension and stress when they are in public, only to release this stress when they are in private. Stress can be reduced if you let the person take regular breaks and ‘time-out’.

 Changes to routine

Try your hardest to stick to the time that you agreed to meet someone with autism. If  a change has to take place, ideally let them know in writing, in advance, with the reasons for the change, and provide the full details of what will now happen instead. Be aware that if a sudden change takes place, the person might be very anxious and will likely need some time to process the change before they can engage with other people. You could help the person prepare for potential unforeseen change by writing down a plan B. For example, letting the person with autism know precisely what to do if their computer breaks down or if their train is late. They can then refer to this information in the event of an unexpected change. When there is an unexpected change it can be very hard for an autistic person to think straight and to make good decisions. This is why having a written script, diagram, or pictures (depending on the person’s learning style)  for what to do in these situations can be very helpful.

Additional difficulties

People with Asperger’s can be very verbally intelligent, but this can conceal common difficulties with organisation and the practical tasks of daily living. Many people with autism have an uneven skills profile, which means that they can be very good in some areas while really struggling with apparently simple tasks. Some degree of motor clumsiness and problems completing tasks that involve manual dexterity is common. For example, I struggle to make my bed and fold clothes and sheets. It is also hard for me to organise my belongings, so my bedroom can become very cluttered and messy. I can struggle to remember where items are located, and I do not always notice or ‘see’ an object that is right in front of me. It can also be hard for me to remember multiple verbal instructions and to carry them out in the right sequence, so, as mentioned before, regular reminders and writing things down can help enormously. These difficulties can be caused by problems with visual perception, spatial awareness difficulties or  executive dysfunction.

Executive dysfunction

As already mentioned, executive functioning refers to the ability to integrate information into a coherent whole, and to gain a sense of the whole picture, in the same way that a boss or executive would get an overview as to how a company is operating. People with autism can get fixated on tiny details, and find it difficult to join the dots together into something meaningful. Consequently  there can be problems with planning and organising, problem solving, thinking ahead and taking into account  the possible  consequences of actions, breaking tasks down and knowing in what order to complete each step, dealing with unforeseen events when completing a task, and difficulties multi-tasking. Executive function impairments can mean that there is reduced safety awareness and an over-reliance on procedures. It can be hard to intuitively work out whether or not something is risky. For example, when I was volunteering at the Weald and Downland museum, I placed cups of water right at the edge of a table, where they could easily have got knocked over.   It would have helped me if someone had told me precisely where to place the cups, instead of assuming that I would instinctively know , on the spur of the moment, that it is a good idea to place cups away from the edge of tables. Of course intellectually I might know these rules in theory, but it can be easy for me to forget to draw upon this information when I am in new environments or having to think on my feet.

It can help enormously if you provide support with organising the person’s work-load. Create a planner for them that will specify what tasks need to be completed by when and in what order. Break down big tasks into sections. Help the person to keep their work-space tidy. Do not belittle them or make fun of their difficulties, even in jest. The person is not being lazy and it is not a character failing. The person cannot help having these problems.

Co-existing conditions

Other neuro-developmental conditions and mental health problems often go hand in hand with autism. For example, I have dyscalculia, which is a specific learning difficulty that affects maths and numerical skills. Consequently my parents have to look after my finances, and I struggle to understand measurements. It can also be hard for me to work out how to use photo-coping machines and other technology, because of my spatial awareness difficulties. Again, it can help me if the rules for using these machines are written down. I might need to be shown many times how to use a photo-copier before I can confidently use the machine on my own.

I also have OCD health anxiety. I worry about germs and contamination. When my OCD is triggered I might need to leave a room. The anxiety is so overpowering that it cannot be ignored, and my flight reflex is very easily triggered. Because of my OCD, I cannot share food or cups, and washing things up can make me anxious. If someone has a problem like OCD, a reasonable adjustment would be to not expect them to share cups with other work colleagues, and to not expect them to share food at work.

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