What is Autism?
Searching the web for an answer to the question ‘What Is Autism?’ presents a large quantity of information which can be overpowering and difficult reading.
While autism is quite complex to describe and hard to understand, it is something we will all probably encounter at one time or another in our lives. If you or a member of your family is not personally affected by the condition, it is likely you will know or meet someone who is – and yet many people do not have any great understanding of the condition.
Unfortunately, in the past many people would have pathologized autism, trying to figure out what is ‘wrong’ with people who are autistic? Luckily, in more recent times we have developed a better understanding of autism. Autistic people are not sick or diseased. There is nothing ‘wrong’ with autistic people.
In simple terms, autism is a neurological difference that many people are born with which affects how they experience the world around them and how they communicate with others.
An autistic person will have a different understanding of the world, a different way of seeing the world and interacts with their environment differently to someone who is not on the spectrum. This presents an individual with challenges in areas that come naturally to others, but it can also present strengths and abilities due to that ability to think differently.
We understand now that autistic people just think or communicate differently than neurotypical people and these differences are not wrong. While our understanding is progressing and being reconfigured, there is still a long way to go to combat the stigma that autistic people experience.
Autism exists as a spectrum
Autism is not a linear scale or line with people at one end being ‘mildly autistic’ and experiencing few challenges in any area and then people at the other end being ‘severely affected’ and experiencing all of the challenges all of the time. This does not reflect how people experience autism.
Thinking of autism as being a spectrum is a much more helpful and accurate concept to understand the variation and individuality across autistic people.
Autism is said to be a spectrum because while autistic people can experience the world differently in specific areas like sensory processing and communication, not all people will have the same profile of differences. So, you could have one autistic person who enjoys public speaking and has a very strong preference for routine. But another autistic person could find spoken communication very challenging but quite enjoys going to new places with little preparation.
Autism is a spectrum, which means it impacts different people, in different ways, to differing degrees, at different times and in different situations.
The Autism Spectrum is a very wide one, with people affected in a variety of ways, to a great number of varying degrees and no two people on the spectrum are affected in entirely the same way.
The areas of difference for those on the spectrum can largely be summed up under the following headings:
Repetitive and restrictive patterns of behaviour
Summing up what autism is for a person who has no prior knowledge of the condition can be challenging – how do you explain an area so large and complex on a simple and easy to understand level?
Now that we have examined the basic facts around autism and addressed some of the common misconceptions, it is important for us to practically explore autism’s impact on a person’s daily life to understand the social realities behind these facts.
Summing up Autism for a person who has no prior knowledge of the condition can be challenging – how do you explain an area so large and complex on simple and easy to understand level? We like to use the train analogy.
The Train Analogy
Imagine what it would be like if you were to be picked up suddenly and dropped into the middle of a packed rush hour subway in downtown Tokyo.
To begin with, you are overwhelmed by the number of people in your personal space – the subway is so packed that you literally cannot move. Lots of people are talking to each other at once, to the point that you can barely hear yourself think. One person standing next to you may wear very strong perfume. Another person may have bad breath from forgetting to brush their teeth. The environment around the subway makes you extremely uncomfortable on a sensory level and you cannot wait to get off and out into the city.
The subway arrives and everyone disembarks. Every other person begins to walk in the direction they need to go in. But you find the signs around the station very confusing and you don’t know how to leave the station. Doing the logical thing, you approach another passenger to ask for directions. You can’t tell from his body language or facial expression whether he is happy to help or annoyed to be stopped. He is speaking very quickly in Japanese and is using local expressions you know nothing about – you cannot follow his instructions as you are unsure about what he is saying to you.
At this stage, you get more anxious – you find the unfamiliar, busy Subway station overwhelming and you cannot communicate effectively with locals around you. You try to go out alone, you look for signs on the wall and try to follow these signs towards the exit. You relax as you feel you are making progress and moving in the right direction. However, you now completely rely on the signs to leave the station. As you approach the final turn the sign before the exit is missing. While everyone else in the station knows how to leave from this point, you have no idea and find yourself right back at square one.
What does the Train Analogy have to do with Autism?
Firstly it’s important to acknowledge in this scenario you aren’t less capable than the other passengers on the train, just different. Day to day activities such as sitting in classroom or commuting may be just as big a culture shock for an autistic person.
Different cultures can be stressful but most of us still like to experience them. Autistic people want to do the same things as other people, but being met halfway can make the difference between being part of the community and being cut off.
Fundamentally, being autistic is like living in a world that is not built for you, and the earlier example helps us highlight some fundamental realities of the condition, namely differences in sensory processing, communication, reading social situations and managing anxiety and stressful situations.
Why are terms like Asperger’s syndrome or PDD-NOS not used anymore?
In previous versions of the DSM-5, in addition to autism, there were the other diagnoses of Asperger’s and PDD-NOS (Pervasive developmental disorder-not otherwise specified). These are no longer considered to be helpful as which diagnosis was given was often highly subjective and dependent on the professional. In the new DSM -5, ‘Autism’ is now used as an umbrella term to capture the different ways that autism can present in individual people. This makes the diagnostic assessment, and also understanding autism, simpler and clearer. Using various terms to describe autism ultimately does not reflect it’s spectrum-like nature and enhances the outdated view that those who are diagnosed as autistic are either ‘high’ or ‘low functioning.
What do the various ‘levels’ of autism in the DSM-5 mean?
The DSM-5 outlines 3 levels of required support for those diagnosed as autistic. Level 1 meaning that they “require support”, level 2 “require substantial support” and level 3 “require very substantial support”. While it is positive that the DSM-5 acknowledges that autistic people require various levels of support and focuses on care needs rather than ability, it does not recognise that sometimes people may require substantial support in one area of their life and no support in other areas. It also does not take into account that the amount of support required in any individual area can vary depending on the day or situation. The DSM-5 model is an improvement from the linear ‘high’ versus ‘low’ functioning view that the DSM-4 imposed but there is still room for it to improve to describe the spectrum nature of the diagnosis.