9 Things You Need to Know About Autism
Autism is becoming more and more talked about today (and rightly so!). Between 1 in 50 and 1 in 100 people are diagnosed as autistic but many people do not understand what autism actually is. There are so many stereotypes surrounding autism, such as every autistic person being similar to Rainman or Sheldon Cooper or that autistic people have no emotions or social skills. These assumptions are so far from the truth and it is important that we re-frame what autism is and spread awareness so that we can all be more inclusive in our every day lives and be more understanding of the differences autistic people have.
1. Autistic people do feel emotions - they're not robots. Often they may struggle to identify them, though, and they may not show them on our faces.
This is a big misconception and one that can be very hurtful to autistic people. Too often I have heard people call autistic people robotic or emotionless just because they may not express things in the same way that neurotypical people do. While it is true that autistic people often have a harder time reading social cues, this does not necessarily demonstrate lack of empathy or feeling. Autistic people may also have challenges in identifying or labelling emotions and may not express them in the way that is "expected" - but that does not mean that they are not feeling anything at all. Dr Emma Goodall PhD highlights that the expression of emotions in those with autism is atypical rather than non-existent and typically developing people may mis-read the emotions. There tends to be less expressive face movement and different body language but in fact the emotions are felt rather intensely. Additionally, there's some evidence to suggest that autistic people feel emotions more strongly even from an early age.
2. Autistic people are usually extremely sensitive to their environment, from sound to light to textures and smells. This is often a cause of our high stress levels.
It's like their senses are dialled up to 11, like Spider-man. Imagine walking down a typical high street. What are the things you may hear, see, smell, touch? The shops, other people, music, buskers, conversation, food, perfume, the gravel beneath your feet, the clothing you're wearing... it's a lot! For most people, they are able to filter out a majority of these things and only focus on what they deem the most important, but autistic people can find this difficult and they are unable to filter things out which heightens anxiety and stress.
Some autistic people may be extremely sensitive to particular stimuli, e.g. loud noises or bright lights, and these sensations may be so distressing that they actually feel painful. Sensory overload can also be extremely overwhelming as well, which can lead to burnout or the need to retreat and have alone time to 'reset' themselves.
You may like: Helping Your Child with Sensory Regulation: Skills to Manage the Emotional and Behavioral Components of Your Child's Sensory Processing Challenges
3. There are wayyyy more autistic people out there than you think. It seems likely it's at least one-in-thirty people and it may be more.
It is hard to determine the exact number of autistic people out there. Recently, diagnoses have become more common due to the increased awareness and understanding, but many people can go decades without a diagnosis or even recognising that their behaviours or traits stem from actually being autistic. It is stated in literature that the prevalence rate is between 1 in 100 and 1 in 50, but it is probably closer to 1 in 30. That means that there's often one child in every class who may fit the criteria for being autistic and having been a teacher for nearly 12 years, I can totally see this being the case!
4. Autistic people are enormously varied, with every conceivable demographic having an autistic population. Trouble is, all too often the focus is on white men and boys.
No two autistic people are the same. Each individual is just that, an individual. Their autistic profile is totally different to someone else's but most of the research and conclusions drawn about autism are based on white men and boys. The ratio of boys/girls who are diagnosed with autism is roughly 3-4:1 and many, many girls are often misdiagnosed as having a mental health condition, anxiety or OCD so often miss out on the support that can come with having an autism diagnosis.
Girls often present with autism very differently and can have different challenges compared with autistic boys or men, so recognition is key. This post looks at how we can recognise autism in women and girls.
You may like: Girls Growing Up on the Autism Spectrum
5. Autistic people tend to have interests that are hugely important to them - more so than just 'hobbies', and they bring us enormous peace and calm when we indulge in them.
Having special interests is a key feature of autism, and they are far more than just hobbies or something that a person finds interests. These special interests could be anything. Common ones are buses and trains, science, flags, insects or plants. Autistic people will often try to learn as much as they can about their special interest subject and often engage with activities or jobs that allow them to explore their interest on a daily basis. For example, someone who has a fascination with trains may become a train driver, work in a ticket office or pursue a career in engineering. Engaging with their special interest is now only enjoyable, but it is also very calming. If an autistic person is feeling overwhelmed or on the edge of burning out, being able to talk about their interest or engage in a related activity can bring peace and help avoid a meltdown.
You may like: What I Want to Talk About: How Autistic Special Interests Shape a Life
6. Generally speaking autistic people prefer to be called that, rather than 'people with autism' - so lead with that. However it's a personal preference so best to ask.
Using inclusive language is important. The language we use to talk about autism is changing and more research has shown that using person-centred language is preferred. For example, saying 'autistic person' or 'autistic child' rather than ' a person with autism'. For many, autism is a key part of the their identity and it is not a separate element.
Recent research from my old university, University of Birmingham, has found that terms such as “Autistic person”, “Is autistic”, “Neurological/Brain Difference”, “Differences”, “Challenges”, “Difficulties”, “Neurotypical people”, and “Neurotypicals” were among those most favoured by the survey group, all of whom were autistic.
In contrast, terms that were unpopular included “Asperger's syndrome”, “Person with autism/ASD/ASC”, “Has autism”, “Disease”, “Disorder”, “Deficits” and “Impairments”, and “Typical people”.
7. Autistic people usually don't seem to have the automatic scripts for social interaction - we have to think about everything we say and do very carefully, so it takes longer and we make mistakes pretty often.
For neurotypical people, this can be hard to wrap your head around but my boyfriend, who is autistic, also describes this and has said it is one of the most draining things about being autistic. Things like small talk, speaking to more than 1 person at a time, conversing with people of different levels of authority can be really tricky because he has to think about every little thing. He described having to think about body language, tone of voice, facial expressions, ensuring he 'looks like' he's listening, trying to remember past conversations, trying to remain present in the conversation, and so on and so on. For most of us, this happens without effort or thinking, but for autistic people, it is a conscious effort and can make social interactions tiring and uncomfortable.
8. Autistic people learn to 'mask', which means acting like non-autistic people. This costs us a lot of energy and well-being, and often leads to meltdown and burnout. Sadly it's expected of us by society, which is very bad.
Masking refers to behaviours that autistic people engage in to 'hide' their autism in order to fit in. Masking may involve suppressing certain behaviours autistic people find soothing but that others think are 'weird', such as stimming or intense interests. It can also mean mimicking the behaviour of those around them, such as copying non-verbal behaviours, and developing complex social scripts to get by in social situations. Some examples of masking include forcing or faking eye contact, scripting conversations, hiding stimming, pushing through situations which are distressing due to sensory needs, minimizing talking about a special interest etc.
Autistic people may feel the need to mask in order to blend in and not stand out, to obtain a job or position, to increase connections with others who may not accept them for being autistic, to lessen the risk of 'social failures' by rehearsing situations, or to avoid discrimination. Masking requires a lot of conscious effort and is extremely tiring which can lead to burnout or meltdown. It can also have a real impact on someone's mental health as it can lessen self-esteem, self-confidence and change one's self-perception, i.e. being themselves is not enough or 'right'.
9. Autistic adults exist, work, have relationships and have children. There are, for example, tons of autistic parents out there who get next to no support.
Autistic children grow up into autistic adults, yet there seems to be such little support for autistic adults. Some people don't even get a diagnosis until they are in adulthood, like my boyfriend receiving his at 23/24. If a child was able to get a diagnosis early on, hopefully they are able to get support where necessary to aid their development but there will be things that crop up in adulthood that no amount of support in childhood will help. Autistic people can be great employees, great parents, great partners but there will be challenges that go with those things that they may need support with.
You May Like: Untypical: How the world isn’t built for autistic people