This World Autism Awareness Week, we want to increase understanding of the lives of autistic people. Here are 12 of things autistic people want society to know about autism.
Dimensions’ Involvement and Engagement Coordinator Michelle Rebello-Tindall and her daughter Lauren, who are both autistic, have worked with other members of the community and Dr Jeremy Tudway, Dimensions Clinical Director, to put together this list.
Follow @DimensionsUK on social media and tell us what you want people to know about autism.
1. We are all individuals
Autism affects everyone in different ways – if you’ve met one autistic person, you’ve met one person. And we are not the stereotypes you might see in popular culture. Don’t make assumptions that we are unfeeling robots, Rainman or savants.
We need to be mindful of language that over-medicalises autism, as it implies there is something ‘wrong’ with autistic people, rather than just different. We don’t want to be pitied or cured; we just want to be accepted for who we are. Just as you do, in fact.
2. Diagnosis isn’t simple
For too long, research into autism has mainly been focused on men, and there is a clear gender imbalance when it comes to an autism diagnosis. Women with autism present in different and often more subtle ways, meaning their diagnosis can be missed or comes later on in life.
In recent years, there has been an increase in people diagnosed with autism. This is not because the number of autistic people has increased, it’s because more people are being diagnosed. Despite this, it can be difficult for us to obtain a diagnosis, especially as adults – so it’s widely accepted in the community that many adults are self-diagnosed.
3. We have hobbies, not special interests
People find comfort in things they are interested in and have a lot of knowledge about. If an autistic person has a particular interest in something and becomes an expert in it, it tends to be labelled as a ‘special interest’, but for a neurotypical person, it is described as a ‘hobby’. Why should our passions be labelled differently?
Autistic people may hyper-focus on a certain subject, particularly the ones we are comfortable with. Instead of singling this out, our interests should be nurtured into a fulfilling career, rather than thought of as just a ‘special interest’.
4. Understand why we stim
Autistic people sense the world differently and can occasionally experience sensory overload. In response to this, autistic children might stim. Stimming is a self-soothing behaviour such as rocking, humming and chewing, which can help with concentration and reduce anxiety. It is important to be open-minded and flexible when you see an autistic child stimming. Acceptance from others gives them a safe space to learn how to self-regulate and adapt to their surroundings.
“Stimming is the common name for repetitive behaviours and is short for ‘self-stimulatory behaviour’. This self-soothing behaviour can enable autistic people to process their sensory environment. They may need to use individual ways to regulate their emotions and provide comfort and enjoyment.” – Jeremy Tudway, Dimensions Clinical Director
5. Our communication might be different
Some autistic people might communicate differently to other people. For some, it is easier if sentences are kept short and simple, so they have plenty time to process the information. Others find it easier when key words and phrases are repeated.
Sometimes autistic people do not communicate with words at all. This should never be mistaken for a lack of intelligence. There are many ways to communicate and many forms of intelligence. It’s important for people to be open-minded and try to find alternative ways to communicate meaningfully.
6. Society needs more autism-friendly environments
Although each of us experiences the world differently, more can be done to make everyday environments more autism-friendly. Simple adjustments such as low-level lighting or decreasing noise levels can make all the difference.
Initiatives like Dimensions’ autism-friendly cinema screenings (for younger, as well as mature audiences), ‘sensory-days’ in supermarkets or autism-friendly club nights, can all make society more welcoming and inclusive for everyone. It is important that there is clear information available about what to expect from a certain environment, so we can make decisions about how to approach them based on what we know about ourselves or our family members.
7. Don’t tell us we ‘don’t look autistic’
Masking is really important in the autistic community. Many autistic people don’t want to draw attention to themselves or be marked out as different, so over time we learn what not to do or say in social situations. For most autistic people this starts in school where we want to avoid being seen as different.
Following social conventions, such as maintaining eye contact or small talk, can be exhausting for us, as we have to put in extra effort that can go unnoticed. Spaces and time where we can take a break from masking are very important. Autism-friendly environments give us relief, as we know we are going to be accepted for who we are. Greater acceptance of the way we communicate, often in an open and honest way, would mean we wouldn’t need to mask as much – we could simply be ourselves.
Many autistic people, especially girls, have become highly skilled at masking, making it appear as if they are not masking at all. But it’s important to never tell us we ‘don’t look autistic’ as it minimises our experiences.
8. Autism-friendly workplaces are positive for everyone
“From my teens being able to obtain and maintain a job to give me that sense of purpose, structure and contribution to others was a lifelong dream of mine.
“But it was only thanks to the great support I received all through college, university and into employment that this dream was made possible…
“I think, with the right investments and opportunities in accessibility and inclusiveness, there is no reason why other organisations cannot do this. I firmly believe I am no one special: I’m just lucky enough to have been given so much great support over so many years.”
As with any kind of diversity, autistic people are an asset to an organisation, because we think differently.
Studies show that only 22% of autistic adults are in employment, but many more of us want to work – we often work part-time or in voluntary roles. The Autism Act requires workplaces to provide reasonable adjustments for autistic employees.: Providing training to managers, allowing communication to take place on email, creating time for breaks and reducing sensory distractions. These are all simple steps that can be taken to make the workplace more autism-friendly.
A workplace which recognises neurological diversity and creates a flexible and understanding environment benefits everyone and helps us flourish in our careers.
9. We need the right kind of representation
There is a serious lack of neurodiverse representation in the media. We want to be represented by autistic actors and are tired of seeing films where autism itself is the storyline.
Sia’s recent film, Music, is a clear example of someone who hasn’t worked with the autistic community on a film that claims to portray our reality. It is important to spend time with us to properly understand us.
A good example of ideal representation of an autistic person is The Curious Incident of the Dog in the Night-time. The author never mentions that the character is autistic, instead, the story shows the world through their eyes, with the plot focusing on the boy trying to solve a mystery of a murdered dog. This is important because it normalises the experiences of people who think differently.
10. We have empathy
Empathy is an obvious and kindly trait.
When does empathy stop?
Empathy stops when people say that I
Do not have any.
Think how I feel.
To say I have no empathy is to say
That I do not feel or care,
That I have no compassion or concern,
That my humanity does not count.
Practice your empathy,
Reach out with it,
And connect it to mine.
Some people think that autistic people aren’t empathetic or can’t feel empathy but this is wrong.
In many cases, we actually feel overwhelming levels of empathy, but we might want to avoid exposing our emotions or show how we feel in a different way. We prefer to say what we mean but might not realise this may have upset you.
11. Too many of us are locked away
The pandemic has given society a taste of what it’s like to be confined into one space and unable to leave their homes.
For some people with more severe autism, this confinement is something they have to endure for years, as they are shut away in Assessment and Treatment Units (ATUs) and given unnecessary medication.
ATUs are meant to be short-term placements for people to receive treatment – but many autistic people are detained without knowing when they’ll be able to leave. According to recent data, over half of people locked in these hospitals have been there for more than two years.
For most people, support from the community is the best option, and more needs to be done to ensure that detention is used as a last resort and for the shortest time possible – so people are not locked away indefinitely.
12. We don’t need awareness, we need acceptance
No two autistic people are the same. Some may not want to be described as disabled and some may not think they have a ‘gift’.
The best way in which you can support the autistic community is to be flexible, make adaptations and remember that everyone is unique with different interests, needs, habits, likes and dislikes.
Get involved in the conversation
Follow @DimensionsUK on social media and tell us what you want people to know about autism.