13 May 2013, 7:24 pm
NightLights wrote:
aghogday wrote:
NightLights wrote:
aghogday wrote:
NightLights wrote:
I know that ABA can be terribly divisive. My sister is an ABA therapist and even though she is incredibly sensitive and caring from the outside it certainly looks controversial. I also recently produced a film about autism that features a therapist, though she is never identified as ABA or not. But the discussion on therapy for low functioning persons affected by autism, as well as access to facilities for adults without parents, government care, and living in society for low functioning persons can all be very difficult and is needs to happen in a discussion rather than a statement of facts.
And I agree with ahgohday that the internet is not designed to facilitate an open discussion, but rather catalogues information. The algorithms can become more accurate, but the only way to really impact the discussion is to either take advantage of the system or to take it to the streets. I actually helped make NightLights to give an opportunity for that discussion. And forums like these are such a wonderful way to have it happen.
And I agree with ahgohday that the internet is not designed to facilitate an open discussion, but rather catalogues information. The algorithms can become more accurate, but the only way to really impact the discussion is to either take advantage of the system or to take it to the streets. I actually helped make NightLights to give an opportunity for that discussion. And forums like these are such a wonderful way to have it happen.
Thanks for coming here and providing a link to the trailer for the movie. It looks like a compelling story that more fully addresses the human element of this discussion.
My pleasure, we're most interested in helping families and persons that deal with autism everyday and we hope the film can open up discussions like these. I would love to ask with that in mind what are somethings you and others think about the need of accurate representation of autism and therapy in films. NightLights features several therapy sessions which, though brief, factor heavily into the story. Do you have some memories where therapy was helpful? or harmful?
I was a non-verbal child until age 4, but my verbal delay was associated with the condition of "Hyperlexia", where there is also a type of "splinter skill" in decoding symbols in the environment. which include unusual precocious reading skills. That does not appear to be a similar issue that is addressed in the movie, per that type of reciprocal social communication difficulty. Hyperlexia is common among the subgroup of individuals diagnosed with "HFA" in the USA under the DSMIV, instead of the Gillberg Criteria Asperger's syndrome in Sweden, that allows for that type of "Hyperlexic" verbal delay.
I think in my case ABA therapy for my Hyperlexic language delay might have been counterproductive, except that I was a "wanderer" and a "bolter" that ran into traffic before I could speak without any fear of the traffic.
There was no awareness of Autism and this potential danger at that time, so I was fortunate that a man stopped his car, picked me up. and brought me back to my mother, who could not understand why I darted across a fairly large yard suddenly and made it to the road before she could catch me. The guy was disgusted at my mother, but she had no idea that she could not afford to take her eyes off of me for even one second when I was outdoors.
My problems lie within connection of language and emotion, and in my case music therapy has been the thing that provided me the ability to communicate better with people combining emotion with language.
It was my own trial and error adaptation of therapy that was not provided with intent of structured therapy.
Alexithymia is prevalent among 85% of people on the spectrum. This type of Music therapy is gaining credence in research to help better develop the ability for reciprocal social communication with other people, which includes that emotional affect of contact, that music can enhance.
The method used in the new therapy is one of tapping drums, for the children on the spectrum who benefit from this new "ground breaking" therapy that is not ground breaking to me per benefit I saw in it years ago, before I was diagnosed on the spectrum in mid-life.
One suggestion I will offer to you, as far as spreading the positive message of your movie, is to avoid the phrase "living with autism everyday", as that is a huge point of controversy and potential "negative emotional trigger", in the Autism Community online for those people that viewed a documentary with that name, that has since been removed from the Autism Speaks awareness effort, because of a statement that was made in that movie about an irrational thought of filicide that a VP of the organization, at that time, made in the movie.
People who think in pictures can often vividly visually recollect moving pictures of things they have seen in their past, if there is a symbol (in this case a familiar phrase of words), that remind them of those moving pictures in memory. That of course is not an issue specific to Autism, but it may be more intense for some people on the spectrum than for most other people with that general visual leaning cognitive map of the world.
That is incredibly helpful, thankyou. I know our goal is to discuss families and persons affected and there are definitely a lot of words and phrases to keep an eye out for. Would you mind sharing some other negative words that you find are used wrongly or too often? I have heard repeatedly that "autistic" is a trigger word as well, is that accurate or are there others?
There is a great variance in the ways people on the spectrum prefer to identify per disability first or person first disability language. I have pursued this issue, and the post below I will link for you provides just how varied the viewpoints are. My suggestion is to use the phrase on the spectrum because it is neutral language that I have never seen anyone get upset about when used in online discussions.
Additionally, discussed in the link is the use of the words disease, disorder, disability or condition. Depending who one talks with the only sure way of avoiding offense is to use the term Spectrum condition or Autism Spectrum Condition if there are people in the audience that may not be familiar with Autism.
http://katiemiaaghogday.blogspot.com/20 ... ntity.html
The word "cure" and just the mention of the organization "Autism Speaks" is highly emotionally triggering for some people on the spectrum, and best to avoid, in any open discussion among people on the spectrum, to insure people keep listening to a positive message.
I personally find none of these words or phrases offensive, but as you will see in the link above, I view the world as ideological first more than ego first.
Other words to avoid when possible are anything that presents a "tragedy" view of Autism or a medical model view such as terms like "epidemic" or "Health crisis"
Also best not to mention "religion" if possible, as that is a high point of discomfort for some people on the spectrum.
And finally, always of note, is that any language used may be understood literally rather than the understanding of metaphorical/figurative expression of language.
My pleasure to offer suggestions.
14 May 2013, 8:30 pm
First off, sorry for taking a little while to reply - I actually wrote out a lovely reply a couple of days ago, but then my computer froze and it got lost in the rebooting. Anyways, aghogday, my only advice for your blog was to work on format. What you're writing seems great (I foresee myself linking to a bunch of your posts), but I'm thinking some readers may be put off by the fact that the entire viewing screen is covered by blog tags when you first enter the website. Maybe move those to the side, or another page altogether? Or maybe only include the tags that encompass the most postings? Just a thought... Also, I really learned a lot from your clarification of the diagnostic criteria for autism vs Asperger's (and the original criteria) - thanks!
The movie looks promising. I'd like to see it before I say one way or the other, but so far it looks really promising. I agree with the avoiding the whole "living with autism everyday" thing - I stumbled upon that particular video (http://www.youtube.com/watch?v=O0vCz2KWMM0 ...the incident in question is at 6:20) on accident when I was trying to find good things about Autism Speaks (I was doing a presentation for a club, and as is my character, I was trying to present both sides). Needless to say, this ended up in the con column rather than the pro. I share the concerns about tragedy/pity views, but having read your About Autism section, it sounds like that shouldn't be a problem for your movie...I'm very excited to see it! (especially as a sibling myself, albeit with an Aspie sister) I particularly liked your quote "Autism is not a puzzle, nor a disease. Autism is a challenge, but certainly not a devastating one" - the spirit of the quote was really nice.
I myself had a rough time with language in my website. I'd been saying autistic, then I read a billboard an RA un-subtly put up on my sister's floor (without asking her) about people first, which was pretty obviously addressed at her. Anyways, after that I thought I had to say person with autism. Then my sister told me that she preferred autistic. And finally I just wanted to say person on the spectrum, but that's a really long thing to write (and can come across as repetitive), so I ended up putting people with ASD most of the time. Hadn't heard of ASC before though. Anyways, is person with ASD acceptable? Would person with ASC be acceptable? I really was and am rather lost about how to address this particular issue. (As a side note, I may end up putting a discussion of what to call people on the spectrum under Autism Lingo on the website.)
Also, kind of wasn't sure where this belonged in the discussion board - I want to ask around for foreign language autism resources. I'm looking to translate the website into Spanish and eventually Chinese (I minored in both languages), but I don't know the lingo for those languages (Aspies, auties...same in Spanish? Doubt it's the same in Chinese). Couldn't find anything here on WrongPlanet and Google's only turned up "official" sort of websites, like NIH and the like, rather than those from the autism community. Anyways, any ideas on resources or where else I should post this question on WP would be appreciated.
14 May 2013, 9:01 pm
BigSister wrote:
The movie looks promising. I'd like to see it before I say one way or the other, but so far it looks really promising. I agree with the avoiding the whole "living with autism everyday" thing - I stumbled upon that particular video and was trying to find good things about Autism Speaks (I was doing a presentation for a club, and as is my character, I was trying to present both sides). Needless to say, this ended up in the con column rather than the pro. I share the concerns about tragedy/pity views, but having read your About Autism section, it sounds like that shouldn't be a problem for your movie...I'm very excited to see it! (especially as a sibling myself, albeit with an Aspie sister) I particularly liked your quote "Autism is not a puzzle, nor a disease. Autism is a challenge, but certainly not a devastating one" - the spirit of the quote was really nice.
Its amazing advice. I'm already adjusting our language to keep that in mind. but you'd be surprised when writing about a person affected by autism all day in the log lines for a film how repetitive that can get. One of the best uses of our language is basically the thesaurus
So BigSister. Our film is actually about a Big Sister who takes care of her brother (who is severely affected by autism, nonverbal). Do you have siblings or have any experiences about a sibling's relationship with an autistic sibling? (used for succinctness there).
Also, just found an awesome videogame attempting to give the autism experience called "Auti-Sim" that is a virtual reality display and shows overexposure in the first person. AMAZING!
14 May 2013, 11:05 pm
BigSister wrote:
First off, sorry for taking a little while to reply - I actually wrote out a lovely reply a couple of days ago, but then my computer froze and it got lost in the rebooting. Anyways, aghogday, my only advice for your blog was to work on format. What you're writing seems great (I foresee myself linking to a bunch of your posts), but I'm thinking some readers may be put off by the fact that the entire viewing screen is covered by blog tags when you first enter the website. Maybe move those to the side, or another page altogether? Or maybe only include the tags that encompass the most postings? Just a thought... Also, I really learned a lot from your clarification of the diagnostic criteria for autism vs Asperger's (and the original criteria) - thanks!
The movie looks promising. I'd like to see it before I say one way or the other, but so far it looks really promising. I agree with the avoiding the whole "living with autism everyday" thing - I stumbled upon that particular video (http://www.youtube.com/watch?v=O0vCz2KWMM0 ...the incident in question is at 6:20) on accident when I was trying to find good things about Autism Speaks (I was doing a presentation for a club, and as is my character, I was trying to present both sides). Needless to say, this ended up in the con column rather than the pro. I share the concerns about tragedy/pity views, but having read your About Autism section, it sounds like that shouldn't be a problem for your movie...I'm very excited to see it! (especially as a sibling myself, albeit with an Aspie sister) I particularly liked your quote "Autism is not a puzzle, nor a disease. Autism is a challenge, but certainly not a devastating one" - the spirit of the quote was really nice.
I myself had a rough time with language in my website. I'd been saying autistic, then I read a billboard an RA un-subtly put up on my sister's floor (without asking her) about people first, which was pretty obviously addressed at her. Anyways, after that I thought I had to say person with autism. Then my sister told me that she preferred autistic. And finally I just wanted to say person on the spectrum, but that's a really long thing to write (and can come across as repetitive), so I ended up putting people with ASD most of the time. Hadn't heard of ASC before though. Anyways, is person with ASD acceptable? Would person with ASC be acceptable? I really was and am rather lost about how to address this particular issue. (As a side note, I may end up putting a discussion of what to call people on the spectrum under Autism Lingo on the website.)
Also, kind of wasn't sure where this belonged in the discussion board - I want to ask around for foreign language autism resources. I'm looking to translate the website into Spanish and eventually Chinese (I minored in both languages), but I don't know the lingo for those languages (Aspies, auties...same in Spanish? Doubt it's the same in Chinese). Couldn't find anything here on WrongPlanet and Google's only turned up "official" sort of websites, like NIH and the like, rather than those from the autism community. Anyways, any ideas on resources or where else I should post this question on WP would be appreciated.
The movie looks promising. I'd like to see it before I say one way or the other, but so far it looks really promising. I agree with the avoiding the whole "living with autism everyday" thing - I stumbled upon that particular video (http://www.youtube.com/watch?v=O0vCz2KWMM0 ...the incident in question is at 6:20) on accident when I was trying to find good things about Autism Speaks (I was doing a presentation for a club, and as is my character, I was trying to present both sides). Needless to say, this ended up in the con column rather than the pro. I share the concerns about tragedy/pity views, but having read your About Autism section, it sounds like that shouldn't be a problem for your movie...I'm very excited to see it! (especially as a sibling myself, albeit with an Aspie sister) I particularly liked your quote "Autism is not a puzzle, nor a disease. Autism is a challenge, but certainly not a devastating one" - the spirit of the quote was really nice.
I myself had a rough time with language in my website. I'd been saying autistic, then I read a billboard an RA un-subtly put up on my sister's floor (without asking her) about people first, which was pretty obviously addressed at her. Anyways, after that I thought I had to say person with autism. Then my sister told me that she preferred autistic. And finally I just wanted to say person on the spectrum, but that's a really long thing to write (and can come across as repetitive), so I ended up putting people with ASD most of the time. Hadn't heard of ASC before though. Anyways, is person with ASD acceptable? Would person with ASC be acceptable? I really was and am rather lost about how to address this particular issue. (As a side note, I may end up putting a discussion of what to call people on the spectrum under Autism Lingo on the website.)
Also, kind of wasn't sure where this belonged in the discussion board - I want to ask around for foreign language autism resources. I'm looking to translate the website into Spanish and eventually Chinese (I minored in both languages), but I don't know the lingo for those languages (Aspies, auties...same in Spanish? Doubt it's the same in Chinese). Couldn't find anything here on WrongPlanet and Google's only turned up "official" sort of websites, like NIH and the like, rather than those from the autism community. Anyways, any ideas on resources or where else I should post this question on WP would be appreciated.
That was great advice. Thanks so much. Lost in the trees instead of seeing the forest. I can't believe I didn't notice now that 262 words was overwhelming, but I did.
Updated for avatar, logo, motto, and mascots Arthur and Yellowboy.
When I think of Person with ASD, I can't get the picture of Person with STD out of my mind. I don't know if anyone else would picture it that way, but it does seem to come across a little "medicalized" I think.
Instead of Person on the Spectrum, perhaps just On the Spectrum or On the Autism Spectrum?
ASC is used in the UK and Australia regularly as it is a term coined by Simon Baron Cohen, but it is not a phrase that too many are familiar with, I think, in the US.
Person with ASC is better in my opinion (per STD) than person with ASD, even if it takes a little clarification per what the C means.
There are quite a few folks from foreign countries visiting this site. You might get the best response in asking that question in the general discussion area as that is were the most traffic is generated on the site.
Last edited by aghogday on 14 May 2013, 11:07 pm, edited 1 time in total.
14 May 2013, 11:06 pm
15 May 2013, 2:37 am
BigSister wrote:
Quote:
So BigSister. Our film is actually about a Big Sister who takes care of her brother (who is severely affected by autism, nonverbal). Do you have siblings or have any experiences about a sibling's relationship with an autistic sibling? (used for succinctness there).
Yes, I am actually a big sister. My little sister (in age - she's been taller than me for about 4 years now) has Asperger's...verbal, super smart but simultaneously over/underestimated. We're super crazy close - she's kind of a mix between a sister and a best friend, plus I've been a bit of a junior mom to her our whole life, with my mommy-ness increasing as years have passed and our own parents stepped back. I could kind of keep on going - I think my sister's pretty awesome and I love to brag about her - but I'd end up writing a whole essay. Also, my sister prefers the term autistic, so you're okay.
Also, aghogday, I checked out the blog and that was a big improvement. Don't worry about not having noticed this before - that's one of the reasons I myself appreciate third party critiques so much. It's hard to be able to see your own website from an outsider's point of view because you know what you intended. If you're okay with more advice, I don't know if it's possible with your website, but my further recommendation would be to move your avatar pic next to where it says KATie MiA/aghogday up top, or down to the right where you have the banner with the lovely view of the beach. Again, it would just put more focus on your posts and less on the formatting of the blog. Either way, though, big improvement! As to your advice, I'll go through and switch to ASC - probably not going to happen tonight (it's kind of late), but it's now on my to-do list. Plus I'll post the question in the General Autism section.
Thank you so much. You have been so helpful to me, by pointing these obvious things that I haven't noticed.
I also came across some new features to increase access to information. If you have any more advice anytime in the future, please let me know.
I also went back and reviewed your website in more detail and I feel comfortable adding it to my list of safe sites for people on the spectrum and people who love them.
I have been sampling various areas on the internet, and to meet my criteria a site must be open to inclusion of all respectful view points and respect human dignity regardless if family, people on the spectrum or the general public is discussing issues.
It has been very hard to find that on facebook, because people can be so cruel to each other when there is not a team of moderation to keep eyes on human behavior. However, I found a few that were exceptional in unique areas of offering.
There are many more that are valuable, but these are the ones that have caught my eye in the last year. Some of them are hidden jewels that do not get much advertisement through marketing efforts. They are linked with the websites on my blog.
http://katiemiaaghogday.blogspot.com/
I described your website as "Autism Spectrum Explained by Siblings on and off the Spectrum".
If you have a preference of naming it differently I will be happy to change it.
Autism Blogs Directory
Autism Discussion Page on Facebook for Helpful Advice
Autism Hangout Community for Social Interaction
Autism SD for Information
Autism Spectrum Explained by Siblings on and off the Spectrum
Autistic and Awesome Blog for Unique Perspective
Care and Feeding of Your Aspie Blog for Unique Perspective (rated PG)
Cracking the Engima Blog for Autism Science
I Have Asperger's Blog for Unique Perspective
Just A Lil Blog on Facebook for Inspiration
LBRB Blog for Autism Science Debate
Thautcast Facebook Community for Artful Acceptance
Thinking Person's Guide to Autism for a Little Bit of Everything
Wrong Planet Autism Community for Social Interaction and Support
15 May 2013, 9:10 am
First off, your blog looks great now! I don't know if you use Google Analytics or anything like that, but your bounce rate (I don't know if you're familiar, but that's the number of people who click the link for your website and then leave immediately...we all have one) should drop WAY down.
I like the title you gave us a lot because even though I did the writing, this was very much a group effort between my sister and me. She read, she edited, she told me things that were important for me to include, most of the examples come from her, and certainly the entire inspiration for the website lies with her. I'm going through your safe sites list now (that's a really good title for it, by the way) and it looks great - I'm probably going to put a bunch of those in my own resources section.
15 May 2013, 9:20 am
BigSister wrote:
First off, your blog looks great now! I don't know if you use Google Analytics or anything like that, but your bounce rate (I don't know if you're familiar, but that's the number of people who click the link for your website and then leave immediately...we all have one) should drop WAY down.
I like the title you gave us a lot because even though I did the writing, this was very much a group effort between my sister and me. She read, she edited, she told me things that were important for me to include, most of the examples come from her, and certainly the entire inspiration for the website lies with her. I'm going through your safe sites list now (that's a really good title for it, by the way) and it looks great - I'm probably going to put a bunch of those in my own resources section.
I like the title you gave us a lot because even though I did the writing, this was very much a group effort between my sister and me. She read, she edited, she told me things that were important for me to include, most of the examples come from her, and certainly the entire inspiration for the website lies with her. I'm going through your safe sites list now (that's a really good title for it, by the way) and it looks great - I'm probably going to put a bunch of those in my own resources section.
Thanks again. I am much happier with my blog now. I am glad you found some of the resources useful.
15 May 2013, 12:41 pm
Thanks to you, too, aghogday, for all your help - definitely learned a lot from this conversation (a discussion of how to refer to people on the spectrum is now in Autism Lingo). If you ever want more help with your blog or want an opinion or something, feel free to message me and ask.
Also, NightLights, I know my response about my sister was kind of short, but if you want to talk more, message me. I love talking about our relationship and I'd be happy to talk to you more.
15 May 2013, 1:34 pm
15 May 2013, 2:45 pm
15 May 2013, 2:46 pm
BigSister wrote:
Thanks to you, too, aghogday, for all your help - definitely learned a lot from this conversation (a discussion of how to refer to people on the spectrum is now in Autism Lingo). If you ever want more help with your blog or want an opinion or something, feel free to message me and ask.
Also, NightLights, I know my response about my sister was kind of short, but if you want to talk more, message me. I love talking about our relationship and I'd be happy to talk to you more.
Also, NightLights, I know my response about my sister was kind of short, but if you want to talk more, message me. I love talking about our relationship and I'd be happy to talk to you more.
That does sound great. Except I don't know how to do that on the forum, haha
can you message me?
15 May 2013, 9:32 pm
15 May 2013, 10:52 pm
15 May 2013, 10:57 pm
06 Jan 2014, 6:34 pm
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