The Essence of Autism and Its Challenges (Mildly Different)
One Spectrumtastic Author: Anna Czarska
Data Analysis by: Joshua Kraut
Sponsored by: Sticky Tape Productions
What is Autism to You?
What does autism mean to you? If you are a friend or family member of someone who is autistic, or are in fact yourself on the spectrum, you are likely to have encountered that one person with autism is vastly differently from another with the same condition. Each autist varies in the way that they are different from neurotypicals, making it almost impossible to really define what autism IS. Much of the traditional research regarding autism is based on studies that were conducted only on males. Recently, a large number of psychologists and researchers have started to recognise that the traits they considered inherently autistic in males were not necessarily expressed the same way in females, who therefore often go undiagnosed. However, despite these differences in expression from male to female and the variances in how they differ from neurotypicals, one thing is certain: each autistic individual struggles to integrate into average neurotypical societies.
The Survey
In fall of 2019, we conducted a world-wide survey for those who are on the spectrum (and their friends and family members) that reached over 30,000 people. We are very grateful to those of you who took the time to participate.
Of the valid responses received, 76% of the respondents were affected personally, while 24% were answering as a friend or family member. There were slightly more females than males, some non-binary, and a handful that preferred not to state their orientation. About a third of the respondents were between ages 18 and 30, while the majority were over 31 years of age.
Respondents were asked questions regarding their condition, if services for autists are adequate in their area, what sorts of issues they struggle with most and other such things. The survey had both multiple choice tick answers as well as boxes to write more in-depth descriptions of experiences.
Reading these responses was a mixed bag that tugged on the heartstrings more than a little bit. Each response was so heartfelt and honest; people truly wanted the world to understand their experience. Although every person described beautifully, and often quite fully, their struggles with integration, it became clear that many felt utterly alone in their experience. We wanted to respond to each one and show them how many others were struggling with the exact same thing in their own way. If only they knew that they are not as alone or as “weird” as they most certainly feel. Unfortunately, as this is an anonymous and confidential survey, we are not able to share the information entirely. However, we can share what we have learned and we hope that this will bring some comfort and awareness.
Autism, Anxiety, and Depression
As we expected, it seems that it is relatively rare for someone with autism to be unaffected by other conditions like depression and anxiety, which are likely brought on by societal treatment of the individual and their effort to appear “normal".
“I struggle to start a friendship with other kids. I feel so different and am not sure how. Most kids just leave me alone or look at me like they are not sure what to do. I have such difficulty with noise at school so it's hard to feel comfortable to be myself and talk to anyone.”
Most respondents expressed that they also had depression and/or anxiety, as opposed to autism alone. It is likely that the anxiety and depression would be somewhat alleviated if there were proper support and diagnostic services for people on the spectrum. Another possible reason for this, is the difficulty autists face when interacting with neurotypicals on a daily basis.
“There’s no real support. Need more advocates to help with communication issues. With friends or family, there is no way a person with ASD can know how to deal with their issues.”
A Lack of Support Services
We have found that there is a serious lack of services for autists all throughout the world and although the UK showed the worst report of adequacy, the scores for all countries showed depressing levels of adequate support for people with Autism. Even in the best performing area, 74% of Europeans said their services to support people with Autism were not adequate.
“As far as I know there are no support services in my area for adults or even an acknowledgement that adult autistics exist. I saw psychiatrists for years for anxiety and depression to no avail and no one ever suggested I might be autistic.”
In addition, older females were 8% more likely than younger females to say services were not adequate. As the older research would often ignore the differences in presentation between men and women, the specialists from the time when these women were children, would miss the signals that autistic females were expressing and they would fall between the cracks.
“A one-stop-shop is great but most activities are male focused, i.e. video games. There's no psychological help for those diagnosed with autism as adults. We're just left to struggle with all the problems we have. You get diagnosed and then there's nothing.”
It is also a challenge to receive services if females do not get a formal diagnosis via entering the system as a youth and as it is more difficult for females to be formally diagnosed, they will often go through life without the proper support they need.
“There are other support orgs locally that do good work, but it hinges on having a diagnosis and I'm told there's currently a three-year backlog for that ...”
In the United States, females were 33% more likely than males to say that adequate support services for Autism were not available in their area. This is again likely due to the fact that they were not getting properly diagnosed early on and therefore were unable to access the support that males had been given earlier. Even people who are receiving a diagnosis are not getting the services they need.
“Never heard of anything for adult women and couldn't afford it if there was anything.”
Regardless of their gender, there is an overwhelming majority of respondents who have expressed that the autism related services are inadequate in their area, and a significant percentage of respondents who don't even know if there are adequate services or not. It would be a great benefit if support services could reach out more to inform those with Autism, and their families, of what services are indeed available to them.
“There's no adult support. Anything would be good. I'd love to learn how to cope better. I have to find out everything online. It's hard to apply.”
The Most Difficult Aspects for Neurodiverse Individuals
“Executive function, anxiety from continuous masking and sensory overload.”
When asked the single most difficult aspect of dealing with Autism, respondents most often chose sensory challenges and communication. Many would expect sensory issues to be the most difficult aspect of being autistic. Though it is the second most difficult aspect reported by our panel, it was trumped by the communication challenges autists face. While autists do struggle with various sensory issues, every person will have their own specific challenges. For instance, while one person may not be able to handle loud noises, another may have issues with bright lights but not have much of a problem with loud noise. Some have mild sensory issues across the board but struggle much more with social aspects like community integration or communication. It is a misrepresentation that all autists walk about with earphones and cannot handle the physical environments they are in due to sensory overload. This is not to downplay the impact that those that do struggle with these issues face, only to express that many times the overload comes from the way neurodiverse individuals process and express during their interactions with neurotypicals.
“People behave directly opposite of the ways they profess they behave, do things at odds with stated rules, norms, ideals, etc., and penalize me for not deviating from the stated rules, etc. and for not understanding why they did or for my mentioning the deviating from the stated rules, etc.”
Communication can be extremely challenging for even the most able of autists when trying to engage with neurotypicals and it can have a devastating impact on both parties, but especially the autist as they do not understand what they did “wrong”. Communication with those on the spectrum is often the purest form of communication you can get, without all the added “fluff” that neurotypicals require to feel okay about the subject matter. Autists don’t require this, and therefore end up being treated like they are insensitive or daft because they are going straight to the root of the subject and engaging on that alone. The content versus the context. Of course, there are autists that do not speak at all and this is taken into consideration in our responses. However, the above must be considered when looking at the number of autists who also have depression or debilitating anxiety. Going into a minefield of context and situational fluff just to get their data across can be traumatizing each time they have to try. It is not surprising that many autists who can talk, choose not to. How can those on the spectrum feel comfortable integrating into the community at all with having to maneuver through this field?
“Communicating my needs/desires through facial expressions and finding the right words to say, while also trying to understand the body language and communication of the other person. But because some know I'm autistic, they treat me differently. Talk to me like I'm a child, seeking attention, that I'm too sensitive/difficult on purpose or they don't believe anything I say at all. That makes communication a very difficult aspect on my part, partly because of my autism but also because I'm dependent on the other person in a conversation to communicate.”
It makes sense for females to struggle less with communication than males do, as women are often socialized and educated while children to be better communicators and will cope better in this regard. Older females would then be more worried about the "next phase" in development, which would be community integration and a feeling of belonging. This early communication training, allows females to better mask their symptoms to the outside world. However, no matter how much they mask, they still feel like the alien coming to earth with a tendril instead of a thumb. They know they aren’t like everyone else, and with one little slip up everyone else will know too. Males tend to have more severe issues with masking their symptoms but seem to care less about integrating into the community. They often still do notice in their own way as is evident by their anxiety when socializing. Perhaps, male autists are less aware of the reason for their anxiety, whereas being socialized a different way early on gave females a greater ability to put words to their difficulties. Despite females expressing their symptoms on a lesser level, they feel the challenges just as deeply as do their male counterparts.
“It takes effort and time for me to understand my own emotions on a subject. I can't understand facial expressions of someone unless I've known them for years. I don't know what to say to other people. After years of struggling I've developed some scripts for certain conversations, but if it's unfamiliar then I'm unable to do anything but silently try to follow the conversation. This is why I have developed few friendships outside of my family.”
Relationships and Autism
When asked, what about their relationships is impacted most by Autism, respondents said that the social aspect (e.g. social fatigue and social anxiety), relationships (e.g. making and keeping friends and romances), and communication (e.g. ability to communicate effectively and feeling understood) were impacted most.
“People often think I'm too strange to be real, that I'm faking how civil or polite I am. They often think I can't know what I'm talking about (i.e. they think I'm lying, making things up). I'm told I'm way too intense. I miss social cues, and so people form bizarre, negative opinions of me based on things completely in their own heads.”
Relationships with others are often distressed due to the differences in communication styles, emotional expressiveness and needs, and the inability of autists to see the little hints most neurotypicals send out as their “silent” communication. These misunderstandings are a two-way street as neurotypicals miss quite a lot when engaging with their autist friend, family member, or significant other as well. Many become offended by the lack of nuances and frustrated by the loops, repetitions, and other ways the autist must processes information. Often, the “repetitive” conversations they are said to be having are actually not the same at all. If you look more deeply, there is often a difference in a word or a few words in that sentence that was “repeated”. These details don’t matter to the neurotypical who deems this annoying, when what the autist is really trying to do is to be as clear as possible, making sure to insert the right word or words in the exact place they belong to make sure there is full, clear understanding of what is being said. This is highly admirable and would do best to be seen as a benefit rather than an obstacle. Many times, autists communicate best with other autists due to this the very reason that they appreciate the details and clarity and don’t need much of the extra bits that neurotypicals require to understand something fully.
Similar to the ability of females with Autism to cope with communication and interpersonal relationships better than males because of being socialized and educated better in that regard growing up, younger individuals of all genders might not have had the time to learn how to effectively or consistently cope with the social aspect (e.g. social anxiety and social fatigue), compared to older individuals.
“At time I was in relationships, I was undiagnosed. If I had of known I had autism etc. then I could have told them this and maybe things would have been different.”
Younger Females Notice The Social Aspect More (Social Fatigue, Anxiety, Cues, Etc.), While Older Females Notice Their Relationships More (Friendships, Family, Romantic), While Older Females Notice The Impact On Relationships More (Friends, Family, Romantic)
As described previously, younger women might not have had adequate experience learning how to cope with the social aspect (e.g. social fatigue and social anxiety) compared with older women. On the other hand, older women would have moved on to the next phase, in being more concerned about making and keeping friends and romances and effective communication.
“All relationships are effected by the complexity of my brain and how I interpret them, I am a very deep thinker and I feel emotions so strongly!”
What Does It All Mean?
All in all, there is an agreement among all respondents that the services for autistic individuals are not proper or are not accessible to them, that communication, relationships, and social integration are a constant challenge, and that most who are on the spectrum are also struggling with anxiety and depression. How could someone not feel anxious and depressed when they are constantly forced to interact with people who do not understand them and often judge their every expression?
“Speaking to others is extremely anxiety provoking and understanding the intentions and emotions of others is very difficult, making it near impossible to form strong and meaningful relationships.”
These sorts of misunderstandings and interactions would make anyone anxious and depressed. The majority of society would be able to elicit socially acceptable expression and communication standards naturally with others who think in more similar ways to themselves (neurotypicals), as would autists naturally be able to elicit socially acceptable expression with others who think in more similar ways (neurodiverse). There is often nothing wrong with the way they are thinking or expressing, only that they are in minority. If we were to flip the situation, and suddenly have autists being a majority and neurotypicals being a minority, I believe we would see the anxiety and depression among autists practically vanish. Autists that are high-functioning/aspergic/or whatever other term you want to use for this category, are perfectly able to do with other autists what neurotypicals do with other neurotypicals. They do not “lack” an understanding of social conduct at all in that way, only that they lack understanding of social conduct with neurotypicals, who happen to be a majority.
“One of the things I am struggling with most is living in a society that has in nearly all ways evolved to meet the needs of people with a different neurology.”
Different does not mean wrong. Masking symptoms more effectively on the outside does not mean that major struggles are not happening on the inside. There is often a well of pain from the rejection of self while not knowing why. Autists are generally more sensitive than neurotypicals but this sensitivity goes unnoticed due to how it is expressed. Often, they can sense that something is off, that something is different in how they are being treated but they don’t know what it is. When autists feel unsure of what they are doing wrong, but can sense that someone is upset with them, they will simply freeze up, making it seem like they don’t care. But they do! They care so very much. Why do they freeze up if they care so much? Why is it not evident in their face or their tone or their body language? The reason is that they do not know what it is they did wrong to upset the other person. And if they don’t know what it is, it could be anything. If it is anything, then the best step forward to stop the conflict is to do nothing at all. So, they do nothing at all. Until they can figure out what it is that went wrong, they are frozen in inaction. They freeze up because they don’t want to keep doing something wrong, something that would make the situation worse. They analyse every piece of data they have from the past and from the current scenario, waiting until they find the correct course of action that won’t make things worse. Because they care. A lot.
“I prefer to be alone, though I crave being among society.”
It is our belief that if autism was more fully understood to neurotypicals, and even to autists themselves, the quality of life for autists would greatly improve. Many would be better able to reach for opportunities that they would be too fearful to strive for now due to their constant rejection by society.
“We need a service that "gives speeches" & explains autism to schools, workplaces etc. and also does counselling for autistic people who try to understand their brains with coping advice.”
Understanding can be taught in schools, but it also needs to start with better research and understanding by those in the field of psychology. This would allow those who fall between the cracks to get the support that they need and finally accept themselves for who they are, to be proud of what makes them different, rather than ashamed of it. Females in particular are often undiagnosed, misdiagnosed, diagnosed later in life, or even self-diagnosed due to lack of proper diagnostic services in their area. Going through life knowing you are so different to others yet not being given the proper terms and knowledge to even explain to others how so, can be a very lonely and confusing experience that no one should have to go through. Let’s change that.
A Final Thought
The research expressed here is very important to us and we hope that it has touched you in some way as well. We have tried to be considerate and careful with word usage that is inclusive of different viewpoints and preferences and that would not insult anyone. However, there will always be something to pick at despite our best attempts and we want to state here that if you do find something, please know that we are pro autism awareness and acceptance in all forms, that we do not adhere to any sort of “cure” nonsense as we feel autism should be accepted as simply a different way of going about life, that we are pro LGBTQ+ community, and that we accept and acknowledge gender preferences. If anyone was offended by any language, it was completely unintentional and we hope you will forgive our blunders. Asperger’s and Autism were merged together here as this seems to be the preference for the majority of individuals we have encountered around the world. In Ireland, many still differentiate the labels but as the general consensus is to merge them, we have done so here.
It has been a privilege to read each and every one of the responses received and we wanted to thank all of the respondents once again for participating in this study.
Mildly Different
We hope you will follow along our pages for our upcoming project, Mildly Different, where we will attempt to raise awareness for autism in women and the situation autistic women typically find themselves in.
We will be launching a campaign for the production of the film soon. Keep an eye out for more details shortly.
Thanks for reading!
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