Autism Spectrum Explained (ASE) FAQ
Q: Why Have Both Siblings Make the Website?
A: This question could probably be rephrased - why is the neurotypical sibling even involved if the website is about autism? Well, the biggest factor is probably that the sister on the spectrum has trouble with writing. So most everything that you see written here is actually typed by the neurotypical(ish) sibling. Never fear, her thoughts are represented here. While she was not the direct writer, she reads, edits, makes suggestions for topics, and approves of every single article before I post it. Her thoughts and opinions are expressed here as much as my own, if not more, as my own opinions are strongly influenced by hers.
Even if my participation hadn't already been necessitated by the writing issues (and the fact that I was the one with the website making experience), there have still been significant benefits to having the both of us work together on this. For the one thing, having me on board meant I was able to contribute a wider understanding of social norms, etc. In fact, during the process of making the website and reading/vetting what I wrote, she learned for the first time that neurotypical people use their eyes to communicate. I also have more experience with autism spectrum related support groups, Internet forums, etc, than her so I was able to contribute that background to the site, along with my own experiences as a sibling (which should hopefully come in especially handy for the page explaining autism to children that I'm working on).
Q: What Experience Do the Two of You Have with Autism?
A: Well, Caley, naturally, is autistic. So she has the unique outlook that comes from that, from having experienced the stigma and the ups and downs that come with an autism diagnosis. She also has a background in public health which is frequently quite useful when it comes to autism.
Myself, starting in high school I began my journey to understanding autism in earnest (although you could say I've been working on it ever since Caley was born). When I first started, I volunteered at autism support groups, babysat children with autism, and did a school fundraiser for Autism Speaks. When I entered college I mentored a woman with autism, got active on Wrong Planet (a forum for people with autism), and got my degree in Psychology. Currently I'm working on adding a post-baccalaureate degree in Communication Sciences and Disorders. I also care for several children with autism, often providing respite care to parents, and Caley and I both travel to the homes of families of newly diagnosed children explaining autism. And, naturally, I made both this website and Autism and U(niversity).
Q: What Makes This Website Different?
A: There are a lot of websites attempting to explain autism, as I discovered when I tried to find an unused domain name for this website, so you'd be right to ask what makes this website different - with all these other pre-existing websites, why did I feel like I had to go and make my own? While there are many answers to that question, there are two important things that set this website apart.
The first and most important is having an adult on the autism spectrum explicitly involved in the making of the website. I really wish that didn't make this website different, but unfortunately it does. As a result of her involvement, many of the articles here - such as The Stigma of Autism and The Autism Narrative - are unlikely to be seen anywhere else.
The second difference is that I tried to make this website very user-friendly and an easy read. I tried to avoid using more formal language or and used pictures and videos where I could rather than text, which I think not only are more enjoyable, but also frequently do a better job of conveying information.
Q: Is This Website Bias-Free?
A: While I generally presented the basic facts of autism, I realize that I am not an unbiased writer in that my sister's thoughts and mine about autism are very much colored by her own experiences and opinions. Given that she is "high functioning" (what I'm assuming Asperger's will be labeled, now that the whole DSM has changed), the website therefore likely leans towards her edge of the spectrum.
In addition, as my sister is an adult, the portrayals and discussions in the website lean towards that age range. I'm not as concerned about that, simply because almost every other explanation of autism focuses on children. Yet children with autism grow up to be adults with autism who have many of the same needs that they had as children, but live in a society increasingly unwilling to meet these needs. In addition, the child with autism and the adult with autism will likely have many differences as, like anyone, most children on the spectrum learn new things, including ways of coping and adjusting as they age. My concern is also that websites that solely focus on children can give others the false impression that the child will remain with those same traits forever, which isn't entirely true. In fact, one in ten children diagnosed on the spectrum get to the point that they can blend in with neurotypical peers.
Beyond those two aspects, though, I have tried very hard to avoid bias or taking sides in the autism debates. I am sure I failed in some areas, but I really did my best to avoid preaching any particular viewpoint save for in My Blog (which is actually the designated area for my opinions/emotions), and maybe a hint of it in the Negative Narrative page, because at the time I wrote it I was particularly fed up with the way my sister was getting treated by society and although I tried, I'm fairly certain that emotion and my opinions leaked through. All that said, I think I generally succeeded in keeping the website impartial - I had many people, both on the spectrum and off, read through the website and all came back with verdicts that it is impartial. I didn't seek out to convince anyone of anything in this website - all my sister and I wanted to do was help people understand autism better, and give you all the foundation from which to make your own decisions.
A: This question could probably be rephrased - why is the neurotypical sibling even involved if the website is about autism? Well, the biggest factor is probably that the sister on the spectrum has trouble with writing. So most everything that you see written here is actually typed by the neurotypical(ish) sibling. Never fear, her thoughts are represented here. While she was not the direct writer, she reads, edits, makes suggestions for topics, and approves of every single article before I post it. Her thoughts and opinions are expressed here as much as my own, if not more, as my own opinions are strongly influenced by hers.
Even if my participation hadn't already been necessitated by the writing issues (and the fact that I was the one with the website making experience), there have still been significant benefits to having the both of us work together on this. For the one thing, having me on board meant I was able to contribute a wider understanding of social norms, etc. In fact, during the process of making the website and reading/vetting what I wrote, she learned for the first time that neurotypical people use their eyes to communicate. I also have more experience with autism spectrum related support groups, Internet forums, etc, than her so I was able to contribute that background to the site, along with my own experiences as a sibling (which should hopefully come in especially handy for the page explaining autism to children that I'm working on).
Q: What Experience Do the Two of You Have with Autism?
A: Well, Caley, naturally, is autistic. So she has the unique outlook that comes from that, from having experienced the stigma and the ups and downs that come with an autism diagnosis. She also has a background in public health which is frequently quite useful when it comes to autism.
Myself, starting in high school I began my journey to understanding autism in earnest (although you could say I've been working on it ever since Caley was born). When I first started, I volunteered at autism support groups, babysat children with autism, and did a school fundraiser for Autism Speaks. When I entered college I mentored a woman with autism, got active on Wrong Planet (a forum for people with autism), and got my degree in Psychology. Currently I'm working on adding a post-baccalaureate degree in Communication Sciences and Disorders. I also care for several children with autism, often providing respite care to parents, and Caley and I both travel to the homes of families of newly diagnosed children explaining autism. And, naturally, I made both this website and Autism and U(niversity).
Q: What Makes This Website Different?
A: There are a lot of websites attempting to explain autism, as I discovered when I tried to find an unused domain name for this website, so you'd be right to ask what makes this website different - with all these other pre-existing websites, why did I feel like I had to go and make my own? While there are many answers to that question, there are two important things that set this website apart.
The first and most important is having an adult on the autism spectrum explicitly involved in the making of the website. I really wish that didn't make this website different, but unfortunately it does. As a result of her involvement, many of the articles here - such as The Stigma of Autism and The Autism Narrative - are unlikely to be seen anywhere else.
The second difference is that I tried to make this website very user-friendly and an easy read. I tried to avoid using more formal language or and used pictures and videos where I could rather than text, which I think not only are more enjoyable, but also frequently do a better job of conveying information.
Q: Is This Website Bias-Free?
A: While I generally presented the basic facts of autism, I realize that I am not an unbiased writer in that my sister's thoughts and mine about autism are very much colored by her own experiences and opinions. Given that she is "high functioning" (what I'm assuming Asperger's will be labeled, now that the whole DSM has changed), the website therefore likely leans towards her edge of the spectrum.
In addition, as my sister is an adult, the portrayals and discussions in the website lean towards that age range. I'm not as concerned about that, simply because almost every other explanation of autism focuses on children. Yet children with autism grow up to be adults with autism who have many of the same needs that they had as children, but live in a society increasingly unwilling to meet these needs. In addition, the child with autism and the adult with autism will likely have many differences as, like anyone, most children on the spectrum learn new things, including ways of coping and adjusting as they age. My concern is also that websites that solely focus on children can give others the false impression that the child will remain with those same traits forever, which isn't entirely true. In fact, one in ten children diagnosed on the spectrum get to the point that they can blend in with neurotypical peers.
Beyond those two aspects, though, I have tried very hard to avoid bias or taking sides in the autism debates. I am sure I failed in some areas, but I really did my best to avoid preaching any particular viewpoint save for in My Blog (which is actually the designated area for my opinions/emotions), and maybe a hint of it in the Negative Narrative page, because at the time I wrote it I was particularly fed up with the way my sister was getting treated by society and although I tried, I'm fairly certain that emotion and my opinions leaked through. All that said, I think I generally succeeded in keeping the website impartial - I had many people, both on the spectrum and off, read through the website and all came back with verdicts that it is impartial. I didn't seek out to convince anyone of anything in this website - all my sister and I wanted to do was help people understand autism better, and give you all the foundation from which to make your own decisions.
