The Making of Autism Spectrum Explained
My name is Creigh, and I'm just your average student with a penchant for making websites. I have no training whatsoever with regards to autism, counseling, or even website making, for that matter, and I'm not on the spectrum myself. What I do have, however, is a family connection. My sister has Asperger's and she and I are incredibly close.
Because of the way I was exposed to autism, my perspective of it has evolved over time. When my sister was first officially diagnosed, I was 11. I didn't really understand what autism was, although I dutifully watched all the videos explaining it right along with my mother. Somehow I got the impression that her diagnosis was a secret, and only whispered it to one trusted friend. Yet, for most of my life, Caley's autism remained a rather amorphous thing - a label I knew she bore, but didn't really understand what it entailed. Female relatives seemed to think it meant she should be pitied; male relatives thought it meant she was spoiled and faking it. Me? I didn't really realize she had autism. I knew, but I didn't know in the same sense that my relatives seemed to; I didn't think of her actions as being autistic, but just as Caley being Caley.
As I grew up, I went through the motions of things I thought I should be doing as the sister of someone on the autism spectrum - I volunteered with an autism support group, babysitting children with autism, and raised money for Autism Speaks. I was tepidly pro-cure, because I didn't know there was any other way to be. Even after all that, it didn't really connect that my sister was on the autism spectrum until it was time for her to go to college, and her autism, which had pretty much been a non-issue up until that point, suddenly became the focal point of discussions. Well-intended friends, relatives, near-strangers, and even a psychologist lectured us telling us what was best for her. Because she had autism, we were told over and over, she couldn't be expected to do more than live at home her entire life.
The thought that my sister was being seen somehow lesser because of her autism - that despite her stellar grades and brightness she was being pigeonholed because of the label she bore - bothered me at a fundamental level and I set out to prove that Caley could go away to a university if that was her choice. In the process of doing all of this, I realized there wasn't so much in the way of information on transitioning to college with autism - and what there was wasn't centrally located. So I decided to make my own website on the subject where I gathered all the information I'd found in my research, which became autismandu.weebly.com. As I researched, I began to see my sister in a different light. Things she did, which I'd always brushed off as 'Caley being Caley' turned out to be because of autism. I grew a greater appreciation of what she goes through and, as I looked back at our lives, noticed as things clicked into place. For example, although the events in The Stigma of Autism happened to me when I was in high school, their significance never occurred to me until I looked back on them in retrospect.
My relationship with my sister grew deeper, one sculpted not by pity, or denial, or ignorance, but by understanding. She doesn't need pity; she's quite happy with who she is, thank you very much. Yet, denial and ignorance - treating her 'just like anyone else' and attempting to toughen her up - aren't what she deserves either. Accommodations don't have to be big; just watching a movie on the small screen instead of in a movie theater, not expecting direct eye contact, or taking her to the mall on a calmer day instead of Black Friday - but they do need to be made. It doesn't make her weak to need them; different doesn't have to mean bad. As a result of this understanding, not only did my perspective on autism change, but so did my perspective on and my relationship with my sister.
As I made the website, though, I noticed that some sections - the ones explaining autism to college friends, roommates, and instructors - could actually stand alone. Later, I met a mother of a child newly diagnosed with autism. I wanted to give her some resources to understand autism, but all I could do was refer her to the Autism and U(niversity), which was less than appropriate for the situation. Still, it wasn't until about six months later, in a light bulb moment that made one sleepless night worthwhile, that the idea to make the sections explaining autism into a separate website came to me. From there, it was just a matter of adapting those sections into something helpful for the general public, and then I was set. Autism Spectrum Explained was born. Over time, I've added even more articles - at this point most of the articles are original to this website - and expect even more to come in the future.
This website has been pieced together using a myriad of sources (cited on the individual pages). From scientific studies, to websites, to books, I've used them all. I've had a lot of help editing from the kind people at WrongPlanet, not to mention my own sister's editing help (she reads and approves everything before I publish it). But most of all, I've also used a good helping of my own experiences with my sister and my own family. It's what I know and it's something I can personally speak to.
My goal in this website is to educate others about autism, to get others near the level of understanding that has taken almost two decades for me to achieve. I care about this goal because I truly believe through understanding we can create a better world for my sister and others on the autism spectrum. Thanks for joining me in making that world a reality.
Because of the way I was exposed to autism, my perspective of it has evolved over time. When my sister was first officially diagnosed, I was 11. I didn't really understand what autism was, although I dutifully watched all the videos explaining it right along with my mother. Somehow I got the impression that her diagnosis was a secret, and only whispered it to one trusted friend. Yet, for most of my life, Caley's autism remained a rather amorphous thing - a label I knew she bore, but didn't really understand what it entailed. Female relatives seemed to think it meant she should be pitied; male relatives thought it meant she was spoiled and faking it. Me? I didn't really realize she had autism. I knew, but I didn't know in the same sense that my relatives seemed to; I didn't think of her actions as being autistic, but just as Caley being Caley.
As I grew up, I went through the motions of things I thought I should be doing as the sister of someone on the autism spectrum - I volunteered with an autism support group, babysitting children with autism, and raised money for Autism Speaks. I was tepidly pro-cure, because I didn't know there was any other way to be. Even after all that, it didn't really connect that my sister was on the autism spectrum until it was time for her to go to college, and her autism, which had pretty much been a non-issue up until that point, suddenly became the focal point of discussions. Well-intended friends, relatives, near-strangers, and even a psychologist lectured us telling us what was best for her. Because she had autism, we were told over and over, she couldn't be expected to do more than live at home her entire life.
The thought that my sister was being seen somehow lesser because of her autism - that despite her stellar grades and brightness she was being pigeonholed because of the label she bore - bothered me at a fundamental level and I set out to prove that Caley could go away to a university if that was her choice. In the process of doing all of this, I realized there wasn't so much in the way of information on transitioning to college with autism - and what there was wasn't centrally located. So I decided to make my own website on the subject where I gathered all the information I'd found in my research, which became autismandu.weebly.com. As I researched, I began to see my sister in a different light. Things she did, which I'd always brushed off as 'Caley being Caley' turned out to be because of autism. I grew a greater appreciation of what she goes through and, as I looked back at our lives, noticed as things clicked into place. For example, although the events in The Stigma of Autism happened to me when I was in high school, their significance never occurred to me until I looked back on them in retrospect.
My relationship with my sister grew deeper, one sculpted not by pity, or denial, or ignorance, but by understanding. She doesn't need pity; she's quite happy with who she is, thank you very much. Yet, denial and ignorance - treating her 'just like anyone else' and attempting to toughen her up - aren't what she deserves either. Accommodations don't have to be big; just watching a movie on the small screen instead of in a movie theater, not expecting direct eye contact, or taking her to the mall on a calmer day instead of Black Friday - but they do need to be made. It doesn't make her weak to need them; different doesn't have to mean bad. As a result of this understanding, not only did my perspective on autism change, but so did my perspective on and my relationship with my sister.
As I made the website, though, I noticed that some sections - the ones explaining autism to college friends, roommates, and instructors - could actually stand alone. Later, I met a mother of a child newly diagnosed with autism. I wanted to give her some resources to understand autism, but all I could do was refer her to the Autism and U(niversity), which was less than appropriate for the situation. Still, it wasn't until about six months later, in a light bulb moment that made one sleepless night worthwhile, that the idea to make the sections explaining autism into a separate website came to me. From there, it was just a matter of adapting those sections into something helpful for the general public, and then I was set. Autism Spectrum Explained was born. Over time, I've added even more articles - at this point most of the articles are original to this website - and expect even more to come in the future.
This website has been pieced together using a myriad of sources (cited on the individual pages). From scientific studies, to websites, to books, I've used them all. I've had a lot of help editing from the kind people at WrongPlanet, not to mention my own sister's editing help (she reads and approves everything before I publish it). But most of all, I've also used a good helping of my own experiences with my sister and my own family. It's what I know and it's something I can personally speak to.
My goal in this website is to educate others about autism, to get others near the level of understanding that has taken almost two decades for me to achieve. I care about this goal because I truly believe through understanding we can create a better world for my sister and others on the autism spectrum. Thanks for joining me in making that world a reality.
