Hello everyone, hope you’re doing well. Today, we have a very special blog post for you for Autism Awareness Month! We’ll be talking about what autism is, what it looks like to others, and how it’s treated. We’ll also be interviewing four of our own developers on the spectrum to see what their experience has been like.
So what exactly is autism? Autism is a disorder that can cause challenges with communication and social interactions, as well as display restrictive and repetitive behaviours. The spectrum used to be composed of several unique diagnoses: classic autism, Asperger's Syndrome, PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified), and pragmatic language impairment. However, these now all fall under the Autism Spectrum Disorder diagnosis, with the spectrum being defined as having a high-functioning end and a low-functioning end, with the high end more able to blend into regular society, and the low end having a very difficult time communicating their needs and wants, with little to no verbal communication. Because of this, the severity of autism can vary drastically from individual to individual, making each case very unique and hard to understand.
So, what does autism look like? For one, autistic individuals often exhibit different social behaviour. If someone is autistic, they may have trouble pick up on social cues that people can normally process, such as facial expressions, body language, and not realize they are committing social errors. Even communicating their needs and wants can be very difficult, depending on how their brain is structured and what communication barriers the person might be facing.
General behaviour can also differ. Many people with autism tend to have a need for "sameness" , with many having great difficulty switching routines or going from one activity to another. For example, if there is an autistic child in class, they may be used to a certain schedule day in and day out. If something were to happen that would bump them off their schedule, this could cause them to feel upset or frustrated at change and hard to deal with. Often, though not always, autistic people can have sensory overload issues. Another example is if a child with autism were in a store and they are sensitive to the bright fluorescent lights, they may become overstimulated and end up having a meltdown in the middle of the store. In order to cope with sensory overload, individuals on the spectrum may perform a repetitive behaviour to help them feel safe, such as tapping their foot, rocking back and forth, or flapping their hands. This is commonly referred to as "stimming" - short for "self-stimulating behavior".
Finally, an important thing to keep in mind is anything that was previously mentioned can change drastically from person to person (as you’ll see with the interviews). There is a saying about autism: “If you know one person with autism, you know only one person with autism”, meaning that autism can look very different in many different people.
As it stands, there is no cure and no medication specifically for autism (and many autistic individuals don't think there needs to be). In order to help with overcoming language barriers with other people, there are several therapies available such as speech therapy and ABA (Applied Behaviour Analysis) which can help an autistic person with understanding how to adapt and change their behaviour to control themselves better. However, if an autistic person is suffering from any side effects from anxiety, depression, or seizures, there is medication that can help with these symptoms. As with many things, early detection can go a very long way in enabling a more comfortable life.
And now, for the interviews! Today, we'll be interviewing the following:
- Hamadyne, one of the directors for Somnova Studios
- Fia, Our medical consultant who has experience with working with autistic people
- Esther, the writer for Katja
- Horroar, one of our programmers
Question #1: When were you first Diagnosed with Autism?
Hamadyne: I was first diagnosed at the age of 7, when I was in first grade, but my parents held off telling me until I was 10 years old so that I would be old enough to understand what it was and how it affected me.
Horroar: About 1 year ago at the age of 22, which is pretty late as most people are diagnosed as children and early teens.
Fia: I was 3 years old when something was off with me, but it wasn’t until I was 5 years old that i was diagnosed with Autism. It took a while because I didn’t really fit the stereotype of autism and I could talk which make people think I didn’t have it, but couldn’t actually communicate. When I started to plateau with my development at the age of 3, it became more obvious and at around 5, it became a lot more clear.
Esther: I was around 5 years old, but my mom didn’t tell me until I was 17, so like a lot of autistic people, I ended up self-diagnosing myself around 13. She had felt if I knew I was autistic, I’d somehow project autism spectrum symptoms/attributes on myself and somehow reduce my quality of life as a result. It actually did the opposite as I knew I did not fit in with everyone else but couldn’t figure out why.
Question #2: What was life like prior to your diagnosis?
Hamadyne: Before I knew about my diagnosis, it was very difficult to handle myself in class, I would get frustrated easily, if my class routine was off I would get set off easily. I also showed a lot of emotions and had a hard time filtering them. My parents saw that I was acting differently from everyone and ended up taking me to doctors to find out what was going on. Once I got a diagnosis, I started seeing a therapist so I could learn how to better understand facial cues, handle my emotions, and learn to communicate with others.
Horroar: When I was in high school, something had seemed off, but I had always felt that some people are “just weird” to put it crudely. I was in therapy for depression and my psychologist thought something was related to being on the spectrum so she recommended me for a diagnosis and I went along with it.
Fia: I mostly spoke in quotes from books, movies, tv, etc. and I couldn’t carry on a conversation at all, especially when things went “off script”. I was really good at rote memorization though and fooled people into thinking I could read when I was 3. My receptive language was certainly better and I could understand more than people thought. Also for reading, I would just memorize what people said each page and repeat it back and just look at what was supposed to be said on each page and say it.
Esther: For the first dozen or so years of my life I was outgoing and even, when I was particularly young, a popular kid. However, as I grew older social norms solidified around me but I didn't have a good grasp of them. So I'd regularly commit social faux pas and only register that I had a while later. Over time this resulted in shame and introversion because I couldn't figure out what I was supposed to do, but I did figure out that if I didn't do anything at all, I couldn't possibly mess up. Figuring out I was autistic didn't necessarily change that as the damage had already been done (and being "officially" autistic doesn't make others any nicer), but at the very least I had an explanation and I was able to talk to others with similar experiences knowing that we had this in common.
Question #3: Where on the spectrum do you fall?
Hamadyne: It’s hard to say, as I was diagnosed with Asperger’s syndrome before the spectrum was a thing. I tend to be considered to being high-functioning however.
Horroar: I have a pretty light form of ASD, so I’m considered to be pretty high functioning.
Fia: Well, on the spectrum? Well, I would probably say I had moderate autism as a kid, but I have kind of became more high functioning as I got older. However, I still have trouble with stuff like maintaining jobs and stuff so it isn't like I am cured. Infact, it is kind of hard to be taken seriously because I don't really fit as nicely in that box of being disabled anymore.
Esther: I can blend in well enough with non-autistics in that people can't tell I'm autistic, and I can communicate fine with people I know, but strangers freak me out and I can barely even answer their prompts. I'm still pretty bad at socializing, especially in unfamiliar environments. If I’m familiar with someone I can keep up a conversation but I depend on them to lead. It's only if I consider someone a friend that I'll actually initiate and take the lead in a conversation.
Question #4: What are some of the struggles associated with having ASD?
Hamadyne: I have minor executive dysfunction, so it can be difficult to prioritize things. I have a tendency to put off chores, I have a big backlog of games that I haven’t gotten around to playing, I’m wrapped up in a lot of game development stuff for Missing Stars and other projects. Motivation can be an issue for me as well. I’m very fortunate to have had a lot of support from my parents, my girlfriend, and from my therapist to help me keep myself on track.
Horroar: One big problem is I have a lot of trouble initiating social interaction, once conversation gets going I’m fine with normal conversation. I feel that the diagnosis helps people understand its beyond me being “anti-social” and they understand that I have trouble with conversation.
Fia: It’s hard interacting with people and social skills, and I also have trouble with maintaining jobs. I had a hard time learning a lot of life skills and it took me a while to learn to live independently. Along with that, I have Sensory Processing Disorder which a lot of people with autism have, but it has gotten better over the years as I have learned to manage it and know my limits. I can go to places now, but only if I know beforehand that they are going to be loud so I can
Esther: Well I have an inhibited social life, because non-autistic people are not always easy to understand and because I prefer to let them lead instead of risking a social mistake. I'm often left out of social gatherings, and even when I'm invited there's often little consideration given to my needs as an autistic person (familiar settings and/or people, some semblance of planning in advance, etc.) It can also be uncomfortable existing in public because I engage in some (more subtle) stimming behaviours and people like to point these out as curiosities which makes me feel self-conscious about them. At home I'm comfortable because I know I won't be judged for, say, blurting out a bunch of random noises that sound nice to me, but if I did that on the bus people would not take it well.
Question #5: Are you currently being treated for ASD? If so, how?
Hamadyne: I’m currently not seeing a therapist and I don’t take any medication. I became pretty well adjusted overall once I became an adult. I feel early intervention is very critical moving forward with future autism diagnosis.
Horroar: I’m not treated specifically for autism, but I do have access to a psychologist to talk to if absolutely need be. I do talk to a psychologist for depression semi-regularly and take medication for it.
Fia: I used to be treated for ASD, but insurance only goes up to age 21 for autism treatment in Michigan so I aged out. I do see a therapist for bipolar that also has experience with people with autism and I just get around it by billing it for bipolar disorder. I do have vocational services that help me with my job however. I get them through this autism organization as well as the state's rehabilitation services.
Esther: Not really no. it isn’t something that needs treatment in my case at least.
Question #6: How do you feel about the public’s perception on ASD?
Hamadyne: Overall, public perception has improved in the last five years, but media portrayals could be better. Shows like the Big Bang Theory and The Good Doctor do not lend credence to people on the spectrum and tend to focus on the savants and super geniuses and portray them as awkward human beings that can only focus on one thing. In the future I would love to see a more accurate ASD portrayal in the media to better improve public perception..
Horroar: Overall, I think it’s pretty okay in my friends group, everyone understood and didn’t make a big deal out of it. I’m still the same person so it doesn’t change a lot. Organizations that help find work who understand the spectrum. There is a lot of resources to reach out to should I need it.
Fia: I don't like how people think that people with high functioning autism have it better than people with low functioning autism, because if you are high functioning, you are in a weird grey area where you can neither fit in that disabled category, but you are also quite not normal so you can't quite fit into society. There are times where I fear how my fiance (who also has autism) and I will be able to thrive by ourselves once our parents are gone, as we are in that grey area and worry about what will happen to us.
Esther: I feel that it’s very bad. There is a lot of progress to be made considering the most well-known autism advocacy organization is Autism Speaks, who have been known for trying to “cure” autism through what is essentially emotional torture and conversion therapy. A lot of non-autistic people also tend to believe that autism is either inherently bad, inherently disabling, something to be “cured”, or something to be bent into a form that they understand.
Question #7: If you had to pick one thing, what do you wish people without autism would understand?
Hamadyne: The biggest one would be that each case is very unique. It’s also not necessarily a bad thing to have autism, and it can even be useful. For me, I ended up learning to read at an early age, before formal education, and ended up doing really well in English and also able to read 1000 words per minute because of it.
Horroar: People are generally understanding in belgium, but the movie Rain Man depicts a very extreme version of it and think it is always like that especially if you don't know anyone on the spectrum. But it isn't always like that. Generally, once someone knows someone is on the spectrum, they’re usually quite understanding of it.
Fia: I just wish I could tell all parents of kids with autism that even though you may feel like you are suffering having to deal with your autistic child's meltdowns, I just want them to know that they are suffering just as much if not more and they are with you with all this and it is society's fault, not the autistic child's fault that you and your child are both suffering. Yes, it is stressful to be a parent of a special needs child, but it is just as stressful to be that special needs child too.
Esther: I'd say that putting even ten minutes into reading/watching/listening to autistic stories of autistic experiences will go a very long way toward closing the gap between autistic people and non-autistic people. Just as you might know that a particular friend of yours doesn't like being around loud noises, there are some very easy things people can learn about us and bear in mind when interacting with us so that we receive the same consideration anybody else would.
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