Autism – Surviving or Thriving Created by a young person with autism who uses Healthy Young Minds.

Basics – what exactly is autism? Autism is a lifelong neurological variation that changes how people process information. Up until recent years it could be diagnosed as either autism or Asperger's Syndrome, however this has been changed to ASD (Autism Spectrum Disorder) due to the limited differences between the two. Autism does not affect a person’s intelligence, but rather how they learn things, and many autistic people consider it a part of who they are.

What does it feel like? Autism is different for every person, and it’s difficult to describe what being autistic feels like, since it’s not exactly a noticeable thing that feels out of place. The most noticeable thing is feeling like the world is too overpowering regarding sensory input, which can be invasive and even painful. Sometimes it can feel frustratingly difficult when you’re trying to get your point across, due to the natural communication differences between autistic and allistic (non-autistic) people. Many autistic people eventually learn how to communicate in a way allistic people understand, however this can take time and it’s likely to still take autistic people a moment to figure out how to phrase something in a way allistic people can understand.

Positives and negatives When discussing autism, it often feels like most people can only focus on the negative aspects of autism, such as sensory issues, meltdowns, and difficulty understanding things such as social cues. However, these aren’t the only parts of autism, and there are positives to being autistic. Our different way of thinking and processing things means we may be able to come up with answers and solutions that might not necessarily occur to allistic people. An autistic person’s special interest can be an excellent and extremely enjoyable pastime, although it is not something that autistic people are constantly thinking about. Many autistic people also find stimming to be fun, as well as something to help them calm down, and sensory sensitivity also amplifies positive sensory input, not just negative ones.

Bullying Bullying is a thing that many autistic people go through at some point or another, and most of the time, it feels like nothing is done about it. Bullying typically occurs because they see an autistic trait that is considered “weird”, and some people find it funny to provoke an autistic person about it until they reach the point of a meltdown. This isn’t necessarily because the person is autistic, since the bullies may not know that they are autistic, but it is more so because of the differences in behaviour that other people consider funny, even though it’s just our natural reactions to the world around us. This (no matter how unintentionally) teaches autistic people to repress their autistic traits, even though they are nothing to be ashamed of, and can further unnecessarily enforce the feeling of being isolated from the rest of the world.

What can be done? The most important thing when dealing with an autistic person being bullied is to deal with the bullies, not the victim. Most of the time, victims of bullying are asked to walk away, ignore the bullies, or change their behaviour so they won’t get bullied. This is incredibly harmful, since walking away and ignoring doesn’t always work as well as people hope, and teaching someone to change their behaviour implies that there is something wrong with the way an autistic person acts, even when it’s not actually doing any harm, and thinking there is something wrong with autistic people and the way we act is incredibly ableist. Instead of asking the victim to change their actions, it’s better to teach children to not target any behaviour or interests that make someone different, and enforce consequences to those who do not listen. This will not only help to support and accept autistic people, but also any other victims of bullying who are targeted for acting differently, especially since there’s a possibility that people who act “weird” might not have been diagnosed. Remember, the victim of bullying is not at fault for the actions of others.

What about a cure? Some autistic people do wish that there was a cure for autism, but this might be because autism is sometimes perceived as an illness that causes people to suffer. This is false. Autism is a part of us, and asking for a cure is asking to remove a part of who we are. Many autistic people do not want a cure, as it once again implies that there is something wrong with being autistic, but rather they just want acceptance. It’s important to remember that it’s not autism itself that makes people suffer, it’s the negative reactions people can have to autism that truly make autistic people suffer. Autism itself does not hurt or cause pain to an individual, but rather the fact that society has been built to accommodate allistic people, not autistic people. This can be easily fixed by changing slightly to accommodate the needs of autistic people, and helping to find coping mechanisms for situations that cannot be changed. We don’t want to be allistic, we just want to be accepted.

Why is routine important? Difficulty with change is a part of autism, although it isn’t present in every autistic person. Both big and small changes can be distressing to autistic people, even make us feel extremely anxious, and even though it is difficult to explain exactly why it is distressing, it is incredibly helpful if it is just accepted. Autistic people are just as frustrated over how irrationally anxious they are over changes in routine, especially if they’re minor, but that doesn’t mean we are able to control it. It may not be rational, but anxiety over something doesn’t have to be logical for it to exist. Of course, changes in routine can’t always be avoided, but keeping as close to a routine as possible, providing as much preparation time as possible and helping an autistic person to find coping mechanisms when there is change can lessen their anxieties and reduce the risk of a meltdown.

What about meltdowns and shutdowns? Meltdowns and shutdowns occur when an autistic person receives too much stimulation and are too stressed. Once we have reached the point of a meltdown or a shutdown, the only thing that can be done is to wait it out. Once we have reached our limit, our reaction to it is either going to be extremely external (meltdown) or extremely internal (shutdown). It’s important to remember that autistic people don’t enjoy meltdowns or shutdowns any more than allistic people do, and no matter how embarrassing it is for allistic people, it will always be worse for the autistic person.

Why can they occur frequently? An autistic person’s tolerance for things such as sensory input may not be the same every day, so don’t expect them to be able to handle a situation one day just because they could a few days earlier. An autistic person’s tolerance can change depending on how stressed they are. It’s like a bath that has already been partly filled, and someone assumes that just because they could put a certain amount of water in before, they can put the same amount of water in again even though there’s already some water taking up room. Once too much water has been added, the bath overflows, and a meltdown or shutdown happens.

How can it be dealt with? During a meltdown or a shutdown, an autistic person is fully aware of what’s going on around them, although they might not necessarily be in full control and may not fully remember the incident later, and they are likely to feel humiliated if there are other people witnessing the meltdown or shutdown, so the more attention they are getting, the worse the situation becomes. The best thing to do is to try to encourage an autistic person to move to a quieter, darker room, where there are less things to stimulate them, and wait for the meltdown or shutdown to pass. If you can’t do this, try to encourage everyone to turn away and not pay any attention to the autistic person, since attention only worsens the situation and makes the meltdown more likely to last longer. If you’re unsure about what else to do, ask the autistic person beforehand about what would be helpful when they are having a meltdown or a shutdown.

Can they be prevented? Meltdowns and shutdowns are not a pleasant experience for anyone involved, so it’s better to try and stop them from happening in the first place. A long-term prevention method is to allow autistic people time to wind down from anything that has been happening by giving them at least an hour or so in the day to do something they enjoy, since this can reduce stress levels. In the event that an autistic person may be getting close to a meltdown or shutdown and they cannot step away to calm down, stimming is a short-term prevention method that will help to keep the meltdown or shutdown at bay until they can reach that time to themselves.

What is stimming? Stimming is short for “self stimulation” and is a coping mechanism that many autistic people use to prevent meltdowns, express joy, or even just to have fun. The most typical forms of stimming are hand flapping, spinning and rocking, but these aren’t the only ways to stim. Chewing, spinning jewellery, fiddling with objects and heavy weights can also be used to stim, and stim toys, including weighted blankets, can be bought to help autistic people stim. Not everyone finds stress balls helpful, so let the autistic person decide what kind of stim toy they would find helpful. Stimming isn’t something that is seen as normal, but it’s important to normalise the idea of stimming, and to allow autistic people to stim in public, as it can contribute to keeping a meltdown or shutdown at bay. Stimming is extremely healthy for autistic people, and so long as it’s not harmful to anyone, stims should be encouraged and accepted.

What do autistic people want? First and foremost, autistic people want to be understood and accepted. To do that, we need to be listened to. Doing research on autism is only so helpful if the source of that information did not have the input of an autistic person, and is more likely to contain toxic views if an autistic person did not help to provide any of that information. Autistic people are the real experts on autism, because we are the only people who will ever be able to truly understand what it’s like to be autistic and deal with other people’s reactions to autism all the time.

Further information The entire topic of autism and how to properly accept autistic people is difficult to contain in one lesson, so it’s always a good idea to gather more information, and autistic people are the best people to gather that information from. When considering what to do to help autistic people, always ask an actually autistic person, as we are the ones who know what we want and need. A recommended source is the Autistic Self Advocacy Network, which is run by autistic people and contains plenty of information from the point of view of actually autistic people. A YouTuber called Amythest Schaber runs an “Ask an Autistic” series, which also contains lots of information on what autism is like and what would and wouldn’t be helpful for autistic people.