chaos is in me
one step closer to the edge
trying not to fall
wraps word order wrong and fails
to stop the echo
chaos surrounds me
closing in fog and laughing
when i disappear
chaos is in me
one step closer to the edge
trying not to fall
wraps word order wrong and fails
to stop the echo
chaos surrounds me
closing in fog and laughing
when i disappear
alone all the time
i wish i knew how to be
different than i am
I call myself autistic but if you call me a person with autism, I don’t mind. If you compare me to a puzzle it is ok. I think you are like a puzzle too.
I don’t speak for all autistic people. I don’t think anyone can.
I understand the reasons why person-first language can be damaging, and the importance of letting people know why that is. If you don’t know, Google it. You will understand too. Better yet, read the article Identity-First Language by Lydia Brown. It contains a well written analysis of why it is harmful to use person-first language, as well as links to other articles about the pros and cons of its usage.
It is important to educate people about these things, but I have been noticing a trend lately of articles that claim to speak for all autistic people, saying that we prefer to be called autistic. Nobody can speak for all autistic people. Not even other autistic people.
I have been an outcast for much of my life. It feels horrible. Even worse is feeling like an outcast in the autistic community.
In the 10 years since I have accepted the fact that I am autistic, I have met so many amazing people both online and in person. I have worked with many of them over the years to help us connect and find each other online. Now, I feel like I don’t fit in to a community that I helped to build.
It is possible that I am missing a big piece of the puzzle. I am not trying to be an asshole and piss people off by writing these things, but as I try to express what I am thinking, I realize that I am scared of even posting this due to backlash from a lot of people who I like to think of as my friends. I actually questioned using the word “puzzle”. WTF?
Today is Autistics Speaking Day and today I am taking the time to speak to other autistic people. I am asking us to keep our minds open to other people’s thought processes and realities, just as we ask them to do the same thing for us.
Disclaimer: This post is partly about educating people with good intentions who are trying to do the right thing, and respecting their processes if they come to a different conclusion. It does not apply to those who believe that autistic people are “less than” neurotypical people, or organizations like Autism Speaks who are actively spreading lies and harming people.
i can not think in straight lines
thoughts crash and I fail
trapped inside my mind
three hours to get my shoes tied
i don’t know how to join in
i hope i can talk
mind jumping around
need to stay focused
stuck inside the house
too confused to get away
not living the dream
so much work to do
a thousand steps to get there
start with the first one
This is autism.
Sometimes I can’t talk, but I can think.
Sometimes I can’t think, but I can feel.
Sometimes I don’t fit in.
Sometimes I am just like you.
This is autism.
Never-ending attempts to organize the world into separate parts.
The lines are blurred.
When all things are one, everything fits together.
When one thing is many, blurred lines clash, and overlap defies logic.
This is autism.
An explosion of color and light and sound and texture.
Every tiny detail is a universe I can get lost in forever.
I try to learn your ways and to teach you mine.
We all have something to learn and to share.
Happy Autism Acceptance month everyone! So nice to read all of the positive posts about autism. I sometimes still have a hard time seeing the positive aspects of autism in myself, but there are at least a few that I am thankful for. I think my favorite one is hyperfocus. Hyperfocus (according to Urban Dictionary) is “a theoretical state of being or ability in which one is able to concentrate and focus on a particular subject so intensely, ultimately becoming oblivious to everything else around”. I do realize that this is not always a positive thing and has been a source of frustration for most people that have spent much time with me, but it has its upsides too.
I have been obsessed with things since I was very young. Everything from a soft blanket that I could not give up until I was way too old for that sort of thing, to dinosaurs, to the guitar, to martial arts, and to computer programming. By obsessed, I mean that I can focus on these things for very long periods of time, to the exclusion of everything else around me. It is not a choice and it is not something that I always want. It is like being a prisoner of my own brain and almost nothing can set me free. If someone is calling my name or if there is an external sound that I know is important, like a cat meowing or an alarm going off to tell me I have to do something, I can come back, but it is somewhat painful and leaves me in a very confused and uncomfortable state.
Look what a positive post this is! Okay, enough of that. It is not all bad and it is often magical and amazing. When I was first learning to play guitar, martial arts, coding, I could not grasp even basic concepts, though there was something about all of those things that kept me coming back.
With guitar, I was fascinated by the instrument and the way that the vibrations of the strings and the echo of the sound hole made such a wide variety of sounds and that those sounds could be controlled by holding down the strings in different ways. I learned some chords and could play basic songs, but they were stiff, for lack of a better word. I did not connect the sounds I was playing with music. It was all very mechanical. Still, that very mechanicalness was soothing to my brain. It was something to hold focus on that was strong enough to take me away from the chaos and colliding thoughts that were usually happening in my brain.
After a couple of years, I could do the mechanical things without thinking. It wasn’t until that point that I started to hear the music. I started listening to songs and playing along with them. At some point, I could hear a song in my head and envision playing it on the guitar. I actually started learning songs while I was sleeping or spacing out. When playing with other musicians and singers, I could listen to them and my part would almost play itself. I heard the guitar part in my head and my fingers just did it. Thinking was completely removed from the equation. That is where the magic happens.
Unfortunately, martial arts did not work in quite the same way, but it doesn’t matter. Like guitar, I love the mechanics of martial arts. I have been fortunate to have some really great teachers who have been able to explain the reasons for each technique. So much going on in even the simplest techniques. I have been doing martial arts of some kind or other for over 16 years. I do not have a black belt, although I do have a pretty large collection of brown belts. Still, it is not quite the same. My lack of short term memory makes it very hard for me to learn certain things. That, combined with the fact that I am not very athletic, somewhat clumsy, and have an annoying delay between thinking and acting, make it especially challenging. While all of those things make getting a black belt seem like a pipe dream, it doesn’t really matter. Doing martial arts, learning about the mechanics and history, and knowing that someday, some of what I have learned might help myself or someone else escape a bad situation is enough. I look forward to it and it makes me happy. You can’t ask for much more than that! Still, I wouldn’t turn away a black belt.
Coding. Programming. It doesn’t matter what you call it. Code is beautiful to me. It makes sense in a way that nothing else does. Whether the code is good or bad, no matter what language it is written in, it will make sense, even when it doesn’t work. You can troubleshoot code in a way that you can not troubleshoot other things. Line by line, file by file; somewhere is the answer. You can not parse people that way. For some reason, this does not seem to bother most people, but it is a thing that has exhausted and confused me for as long as I can remember. Hyperfocus is an escape from that.
Illogical things make my brain explode. Hyperfocus puts the fragments back together. I know there are many people who hyperfocus on things that are not logical, but I think it is often in search of logic. I used to be somewhat obsessed with World War II and read everything I could find that might explain what could make people do the horrible things that were done. I actually found many answers. I wish I didn’t. Frames of logic differ from person to person. That particular obsession did not make me less confused, but it gave me a frame of reference as to how such horrible things could actually happen. It also taught me that things are not as black and white as “logical = good, illogical = bad”. People can do horrible things that seem completely logical to them, and people can do amazingly kind and heroic things with actions that defy logic.
While hyperfocus has had its ups and downs for me, I think it is something that is needed in this world. It is the thing that allows people to tear things apart and break them down to their core components, until something finally makes some sense. Autistic people are not the only ones who experience it, but it seems to be one of the most common threads all along the spectrum. It is a valuable ability, no matter whether or not people can communicate verbally or hold down a traditional job or assimilate into cultural “norms”. It is a way to go beyond the “box” in order to think outside of it. It is a way to question the reason that the box exists at all.
By Karen Hillman
Fully accepting that my partner’s autism shapes her world, but does not define all of who she is – she is autistic and also a web developer, a gamer, a cat lover, a music lover, a brown-belt in karate, a geek, a great listener, a vegetarian, a wife, a sister, a daughter, a friend. Her autism does not mean that she has no empathy; in fact, she is one of the kindest, most sensitive people I know. It means that I have to rethink the way I relate to and express myself to her – I have to be clear, open and honest more than I ever had to – or wanted to – before we were together. This has been one of the most difficult and rewarding things I’ve ever done and I continue to learn, screw up, relearn, over and over…and she lets me.
Accepting my partner’s autism means that I need to socialize on my own, without her by my side sometimes. I need to watch out for her, to pay attention to make sure she feels included, is not too negatively impacted by sensory input or her environment. It means I need to be patient and understanding and that I need to try to explain things about the neurotypical (NT) world, much of which has no good explanation. Accepting my partner’s autism means that she also fully accepts me with all of my many flaws and idiosyncrasies. It means that I can revel and delight in the things that she shows to only me, because unfortunately, letting them out in an NT world can be embarrassing or detrimental to her.
Autism acceptance means that I have to understand why people who are autistic are angry, feel disempowered, and are sometimes distrustful and suspicious of NT’s. It means I have met many wonderful people with autism who graciously welcome me and teach me things about myself. Autism acceptance means I need to recognize that there are many different ways to communicate and to express oneself. I need to put myself in my partner’s world and not just expect her to live in mine. Autism acceptance has changed my life, exponentially, for the better.
Once again, it is Autistics Speaking Day. I want to write a post about the positive aspects of autism, but at the moment, it is hard. It has been almost 8 years since I found out that I was autistic. At first, it freaked me out because there is no cure. Eventually, I started to see the positive aspects and realized that I would be a different person if I had a neurotypical brain. I do not want to be a different person, at least, not for the most part. I used to wish there was a magic pill that I could take to make me “normal”. I still wonder if I would take it if one existed.
Even though things have improved quite a bit over the years due to medicine, learning coping skills, and most of all, help from people that love me, there are still times that I want that pill. I want it so bad. Sometimes I hate being autistic. I am not sure that it is okay to say that in the part of the autism community that I participate in most.
Over the past few years, the autism community has become divided. A VERY simplified explanation is that there are organizations like Autism Speaks, that do not have any input from autistic people and are very invested in searching for a cure. There is much more than that. Please do not support them.
On the other end are self-advocates who do not believe that autistic people need to be cured and who advocate for legal and societal change that will help them receive the services and accommodations that they need. As a perspective for people reading this post, I would definitely consider myself a self-advocate.
If there were a cure, I think individuals should have the option to choose for themselves if they want to be cured or not. That is a slippery slope when it comes to children, so honestly, I have no idea how something like that could actually work.
I am sometimes discouraged by the rift in the community, and sometimes confused by it. Sometimes, I wish that the conversation was more civil. I don’t think it is “us against them”. I don’t think that parents desperately looking for a cure for their child are evil, even if they hate autism. I do think that they need to be educated by autistic people and hope that there will be time when that will not be necessary anymore.
Autism can cause pain for both the autistic person and for their loved ones. It can be horrible and seem impossible to deal with at times for both the autistic person and their loved ones. There are also many positive things about autism and autistic people. We are a necessary part of the world. We think differently. Someone has to. It is hard to navigate a community where things sometimes seem so black and white. I think autism is gray.
My life is usually pretty good. Even when I was younger and things were so much harder, I was still lucky to have parents who loved me. In the 70’s, autism was not a common diagnosis. My problems were blamed on bad behavior, antisocial attitude, being lazy, not trying, whatever. In the 80’s, these diagnoses changed to things like schizophrenia, depression, anxiety disorder, etc. It wasn’t until the 90’s that someone suggested to me that I might be autistic and until 2005 for me to accept the idea as a possible reality. I think autism education, especially by the self-advocacy community is changing the way people think about autism in a good way, and that it will make it much easier for people to be diagnosed early and to get what they need. Maybe someday when parents get the news that their child is autistic, they will not automatically panic, fear the worst, and do everything they can to “cure” their child. Maybe they will accept it as a part of who their child is.
When I was younger, I would have done anything to be cured. I think my parents would have too. Even now when my life is so much easier, there are times when I just can’t stand it. I can’t stand being a prisoner of my own brain. I can’t stand not being able to socialize normally, read regularly, think clearly, and sometimes even speak at all. I do not know how to explain what that is like. A while back, I read a post by Savannah in which she used the phrase “A thousand hard things”. That is a good description of what it is like.
I really wanted to write a post for today. I think these posts and this day are very important. I hate that part of me had to think about the possible negative reaction from the people I consider part of my community, but I realize that the fact that I did makes it even more important for me to post it.
By Karen Hillman
Note from LB: This article was originally published on the Autism Women’s Network website and is reprinted with permission from the author. It is about Karen’s and my move here last year from Oakland, CA. We are both still learning to adapt to our busy lives here, and for the most part, we have both managed to find ways to recharge and have fun along the way.
As some of you may know, last year my partner Lori, who is on the autism spectrum, moved with me from Oakland, CA to Baltimore, MD so we could be closer to my aging parents. There have been a lot of ups and downs. The biggest “down” that has had lasting repercussions was that Lori lost her SSI (Supplemental Security Income). With everything going on, we didn’t think about the fact that co-owning our house would be considered an asset. What this has meant is that she’s had to work more than full time hours to expand her freelance web business. That has put immense pressure on her to take on way too many things at once. For those of you on the spectrum, you can imagine how difficult this has been. It’s way too much for her to handle and yet she is handling it probably way better than she (or I) thought she could. I think the “up” is that she sees how capable she is of running her business despite the challenges. That said, it’s still way too much. With SSI she was able to work more or less as she needed for the most part. I don’t think things are sustainable the way they are – she’s working too many hours without getting time to relax and turn off. Her brain needs a break. The other “up” is that now people in this area are starting to value her services and get to know her and I think that is a good thing. Sometimes I have to (almost literally) drag her kicking and screaming to things I know she will enjoy, even when she is overwhelmed. Fear not, this rarely happens and I try hard to pay attention to whether I can push or not – sometimes I’m wrong and I blow it. I just know it’s important for her to sometimes be around people she can relate to whether it’s others on the spectrum or other web developers.
Some unsolicited advice to you NTs out there with partners on the spectrum considering a giant life change: do your research – financial stuff especially but also what supports are available where you are moving? What can you do to make things as comfortable as possible? If your partner is on medication and diagnosed “officially” or not and gets some kind of services, what can you do to help ensure your partner can continue to get his/her needs met for meds, counseling, etc? What resources are available in the new area? Be extra gentle, compassionate and understanding that uprooting may have an especially big impact. Get support for yourself – of course, this is a big life change for you too and you have needs as well. Try to find breaks in the action – do some things together that aren’t about pre or post-moving tasks, regroup. Help your partner find his/her way around the new place in the way your partner learns best. Spend some time exploring together. Try to build new routines as soon as possible if your partner finds that helpful. Help your partner understand and become accustomed to the norms of the population in the new area. Remember that your partner also has a lot to offer. Be honest and communicate clearly about your own stress and what you need. Most of all, give yourself and your partner time to settle in.
Please feel free to post about your experiences with life changes and what has been helpful/not helpful for you.
I have been running my freelance web development business for over 15 years, the last 8 of which have actually involved a business license, paying taxes, and making money. Each year, I do a little better than the last.
Running a business can be challenging to everyone, and as with most things, can provide extra challenges for autistic people. Also, as with most things, we may have skills and abilities that give us a greater chance of succeeding despite the extra challenges.
In honor of Autistics Speaking Day 2011, I will write about my personal experience of running a business with these challenges and benefits. I have been very lucky and have had a lot of help along the way and would be very happy if I could help someone else looking to follow a similar path.
First, a few words about luck:
I do not have the business skills to run my own business. Before Karen was my billing manager, I often forgot to bill people and could not keep track who had paid even though I use software to keep track of such things. Software is useless if you forget to supply the needed data. Every month, Karen makes sure that clients are billed and follows up when someone has not paid. Needless to say, this has had a huge impact on the success of my business!
I have also been lucky to have a community of web designers and developers that send work in my direction. Most of this community is in the San Francisco Bay Area and I miss them a lot. I have not yet met that community in Baltimore, but I have met some really great developers at local PHP and WordPress meetups. I have been especially lucky to meet one woman who has welcomed me to Baltimore with open arms, sent great jobs my way, and shares her office space with me!
For the most part, when I work with other internet professionals (designers, developers, consultants, marketing people, copywriters, etc.), I have much less client contact than I do when I am working directly for a client. If I had my way, I would have a partner who takes care of the business and non-technical client management side of things all the time.
Challenge/Benefit #1 – Communication
When I was a new freelancer, I did not yet know about the client phenomenon known as “one more thing”. “One more thing” is when a client thinks a task is very simple, when in fact it may take several hours or days to complete. “Can you just [insert complicated time-consuming job here]?”. I am often expected to do this for free, because it is part of the website that I am building for them. No, I can not just do that. It will add 3 days to the project time and cost $1000.
It is a skill to communicate to clients what is involved in creating the things they are asking for. In most cases, it is best not to be too technical because most people do not understand the jargon of web development. Why should they? By attempting to simplify things into terms that a client can understand and relate to, the amount of time and work necessary to complete a project can seem like it would be much less than it actually is.
I like to have honest relationships with my clients. I do not generally ‘read between the lines’ and I never speak between them. I am autistic. My communication skills are limited, yet for the most part, my clients seem to like and respect me a great deal. Some will become frustrated with me at some point or other due to a communication (or lack of communication) issue, but all have appreciated my honesty, attention to detail, and dedication to giving them the best site possible within their budget.
Challenge #2 – Organization
Every morning, I look at my todo list, get overwhelmed, and start my work day. The list is always long. I use software to prioritize tasks and to view them in very focused ways. Otherwise, I would not have any idea what to do first. If I have to think, I am doomed to spend hours in a state of confusion while rapidly alternating between hundreds of things for 30-60 seconds each. Very bad for productivity to say the least.
Challenge #3, Benefit #2 – Hyperfocus
When I am not serially uni-tasking at rapid speeds, I can usually be found doing the exact opposite, hyper-focusing on one thing for hours at a time, usually code. In general, this serves me well, but sometimes there is a need to come out of the code and attend to something else. I find this very hard to do at times, to the point where I can not give my full focus and attention to something because I can not let go of the code. The amount of confusion that occurs while trying to shift can be very painful and disorienting to me and very annoying and frustrating to a person trying to pull me back.
Hyperfocus can also be a benefit when learning new skills. I work in an industry where there is a need to be constantly learning new technologies and keeping up with older ones. The ability to become so engrossed in something that it becomes all-consuming makes it much easier to keep up.
Benefit #3 – Helping Each Other
At some point, I would like to work with an autistic intern/apprentice and teach them the skills that I have learned in a way that they can understand and in an environment that they can be comfortable in. I have a similar wish to teach karate to autistic people someday.
In the past 5 years, the autistic community on the internet has grown exponentially and brought thousands of people together. This has expanded to “real life” communities, government action, education, and many other areas, but it is still not enough. It is our voices that will lead the way to a better future, whether those voices be vocal or assisted by a device or person. It is our voices that will allow us to reach out to one another, help each other, and share our unique views of the world with the people who’s world is sometimes a mystery to us. It is our voices that will tell the world that we have voices.
My children want you to know that being of few words does not mean being of little intelligence.
My children want you to know that being socially awkward doesn’t mean they cannot be wonderful, kind, loving and loyal friends.
My children want you to know that they stim because they need to, not because they are brats with little self-control who wish to irritate you. My children want you to know that they are not “picky”, “wussy” or “incorrigible” because they cannot tolerate certain lights, sounds, fabrics or foods. They experience the world quite differently than you do from a sensory standpoint, and they are doing their best to process and handle all of it. Think of having the volume turned up on every one of your senses at all times.
I watched a great video today featuring John Elder Robison that touched on the subject of Empathy and Autism. There is a popular opinion that people with autism do not have empathy. I am not sure if this true.
I think I am a very empathetic person, but I am not completely sure that I am empathetic in the way that other people are. Sometimes, when I see someone who is sad, I feel sad too. If it is someone very close to me, I can feel their sadness like it is my own. Sometimes even worse. I think this is similar how most people experience empathy. On other occasions, I think I can not experience empathy in the common way due to not always understanding the way the general population thinks and feels.
There have been many times in my life where I have found myself being stared at in exasperation by someone because I do not understand what they are feeling or why they would be feeling a certain way. Sometimes, I can look back and understand what I had done wrong, but other times, it remains a mystery.
One thing I really have a hard time with are social conventions and expectations having to do with clothing. I will never understand why it is acceptable to wear uncomfortable clothes (that may possibly even endanger your life if you have to run from someone!), but wearing clothing that has been aged to soft perfection is looked down upon if it is beat up looking or has holes.
Over the years, I have learned that it is sometimes embarrassing for people to be seen with me because they are concerned about what other people will think about them, about me, or both. I accept that as a fact and often try to not put people into this uncomfortable position. The conflict comes when I do not have the energy to go along with this and/or am very upset by it for some reason, like entering a situation that is terribly uncomfortable and having the added stress of not wearing familiar and comfortable clothing. I realize that I am much more sensitive about clothing than most people, but it is not something I can change, and therefore, always something I have to deal with.
Even though the situation above is only about clothing, it can cause strong feelings of anger, disappointment, and sadness. I can not always empathize with someone who is feeling a lot of anger or sadness because of the way I dress, even if I completely understand why they are feeling the way they do. There are plenty of other situations where this applies that have nothing at all to do with clothing.
I have often been labeled “non-compliant” or “anti-social” and perceived as a person that does not care about anyone or anything, including myself. Lack of empathy is just the tip of that iceberg. School officials, medical professionals, and even sometimes people who are close to me have believed that I don’t care and/or don’t understand what they are thinking or feeling.
It is true that often I have not understood. Over the years, I understand more and more. It has never been true that I don’t care even if I acted like it. Does not understanding and thereby not being able to feel what I “should” be able to mean that I am not empathetic? I think it might.
In the Apple widget dictionary, empathy is defined as “the ability to understand and share the feelings of another.” If I don’t understand why someone is feeling something, even if it is a feeling that most people would instinctively understand, by definition I can not empathize with them.
As usual, this is getting rambly and I have ended up with more questions than answers. John Elder Robison is taking part in some studies that may someday figure out these mysteries and I am very curious what becomes of them. Does anyone else have thoughts about the experience and/or non-experience of empathy in autistic people?
Last month, we were just a few places short of winning the Pepsi Refresh Everything contest.
This month we are sure to win! Well, not really, so I must ask again:
Please keep voting for the Autism Women’s Network EVERY DAY in December!
There are 3 ways to vote:
Thanks very much everyone!
Last night, Karen and I attended Exhaling Beauty: an Evening Celebrating Females on the Autism Spectrum. The aim of the event was to share and showcase the talents, experiences, and spirit of the female ASD community. They definitely did that. I have never heard of another event like this and I am very thankful that they put on this amazing show and will be taking it on the road. It was really nice to be there with Karen, especially on the day that she passed her national social work license test. Congratulations Karen! 😀
Shana Nichols is a psychologist who specializes in working with girls on the autism spectrum. I don’t think there are too many other people in existence with this specialty. Hopefully she will start a trend! She spoke about girls growing up on the autism spectrum and some of the challenges they face. It was really amazing to hear about how she helps these girls to try and see the positive aspects of being on the spectrum and empower them to make the most of their skills and interests. It makes me incredibly happy to know that young girls will have the chance to be understood and taught to deal with living in the world on their own terms. I imagine it to be the polar opposite of how things were for many of us who did not grow up in a time where services like this existed. Shana is the author of Girls Growing Up on the Autism Spectrum: What Parents and Professionals Should Know About the Pre-teen and Teenage Years.
Rudy Simone is a jazz singer and the author of Aspergirls: Empowering Females with Asperger Syndrome, Asperger’s on the Job, and 22 Things a Woman Must Know: If She Loves a Man With Asperger’s Syndrome. Rudy’s presentation was called “Loving the Aspergirl life: How to navigate the challenges of adulthood and have the fulfilling, inspired life you were meant to”. She spoke about her life and many of the challenges that she has been through and how she ultimately pieced together her skills and talents to make a better life for herself.
Liane Holliday Willey was the last to speak. Her presentation was titled “Life Shared with ASD: A Journey of Challenges, Self-Acceptance, Forgiveness & Healing”. She told some heart-felt and personal stories about growing up on the spectrum, her current life and challenges, and some really amazing stories about her father, who also had Asperger syndrome, and how much he meant to her and taught her throughout her life. Liane is the author of Pretending to Be Normal: Living With Asperger’s Syndrome, Asperger Syndrome in the Family Redefining Normal: Redefining Normal, and Asperger Syndrome in Adolescence: Living With the Ups, the Downs and Things in Between.
Me and K had a really great time and met some great people, in particular a mother and daughter who travelled all the way from Missouri to see the show. The both seemed like really great people and it was nice to get to talk to them. It was also nice to meet the authors and Kim Miller.
Thanks to everyone who voted for AWN in last month’s Pepsi Refresh Project. We didn’t win, but we were in the top 100 highest votes for our category and will be able to participate in September’s challenge. Please keep voting every day through September 30th!
The voting process is kind of confusing and round-about depending on which method you vote with. I think the easiest way is texting. To vote by texting, text 101500 to Pepsi (73774).
I have been voting by clicking the link in my sidebar and logging in through Facebook. Every day, I need to click the vote button 4 times. Please make sure you have voted after you click the button. You will know if you voted because the vote button will disappear and be replaced by some text thanking you for voting and asking if you want to help promote the idea. It might be quicker or easier if you get a Pepsi Refresh account and log in that way. As confusing as it may be, please take the extra 30 seconds to make sure your vote has been counted.
Disclosure: Lori is the Director of Technical Services and Web Development for AWN.
Please vote for the Autism Women’s Network (AWN) in the Pepsi Refresh Everything Project. I have been working with AWN since the beginning as director of web development and technical services and it is a truly awesome organization.
AWN is a unique organization that was founded by women on the autism spectrum. Our mission is to provide effective supports to autistic females of all ages through a sense of community, advocacy, and resources.
This month, AWN is taking part in the Pepsi Refresh Everything Project.
You can vote by texting 101500 to Pepsi (73774) once per day.
For more information and to vote online, head over to the AWN Pepsi Refresh page:
You can also vote directly from this site. Click the ‘Vote for this idea’ button in the sidebar.
I got kind of confused when voting, so please make sure you vote goes through. You need to log in with your Facebook account or create an account on the Refresh Everything site BEFORE clicking to vote.
Thanks everyone! Please share this with anyone you know who may want to help!
Disclosure: Lori is the Director of Technical Services and Web Development for AWN.
I have been different from other people for as long as I can remember. Over the years, I have had many different diagnoses, opinions, and treatments that were not quite right. My parents have tried to get me help since I was a little kid, but no one really knew what to do with me.
I was a smart but strange kid. I didn’t understand things, especially people. I didn’t fit in. I thought school was dumb. I thought a lot of things were dumb. Turns out a lot of them are, but many were not as black and white as I thought at the time. It wasn’t until I was an adult that I began seeing shades of grey.
During my early years of school, I barely talked at all and spent a bunch of time in the principal’s office. My teachers and school psychologists thought I could be normal if I tried harder. If I would just be like the other kids, they would like me and wouldn’t be so mean to me. I just wasn’t “applying myself”.
It wasn’t until 5 years ago that I finally learned what is “wrong” with me. I have Asperger’s Syndrome. Autism. I sometimes wonder what would life have been like if we knew that when I was 3 instead of when I was 38? It is hard not to think of all the “if”s.
Would I have been a happy kid? Would I have finished college? Would I have never wanted to kill myself? Would my parents have had a happier and less frustrating life? Would they have had support and not had to figure everything out for themselves? No way to know and generally a bad place to take my brain.
For Autism Awareness Month, I would like to write about autism from the perspective of the people who are closest to me. They have been there for me through the best times and the worst. I think that acknowledging and documenting their experiences is an important part of increasing autism awareness and would like to thank them all very much for answering so honestly and thoughtfully.
I asked 5 questions each to my partner Karen and my parents Gloria and Ron (M&D). Here are their answers:
1. What, if anything, changed for you when you found out I am autistic?
M&D: What changed for us when you were finally diagnosed was relief and sadness. We were glad to hear that they finally put a label on all your symptoms and you did not have a life threatening disease and that this condition was somewhat manageable. We were also very sad and disappointed that this was not diagnosed earlier in your life because of all the pain and suffering you incurred unnecessarily for so many years. As parents, your pain was our pain.
Karen: So many things changed – maybe not immediately but I’d say quite a bit in that first year – more than I could probably put to words here.
A lot of things started to make sense in terms of why you do some of the things you do. I remember looking it up in the DSM (which I use regularly where I work) and feeling like all the puzzle pieces had clicked into place. I never thought of autism because in the DSM it’s listed as a condition that is diagnosed in childhood and I work with adults so it never occurred to me. I don’t think I had heard of Asperger’s at that point.
When I say “some of the things you do,” I mean specifically – rocking, flapping your hands (or “stimming”), echolalia (repeating words or phrases), getting “loud head” – i.e. becoming sensory-overwhelmed, having difficulty with certain social situations or people. Also just some things about what you like or dislike make sense in terms of sensory input – your love of soft things and clothes, your dislike of certain tastes or textures or lighting or sounds.
Another thing that changed is that I had a better context for understanding some of the ways that you see the world. I feel like we went on a journey together as we looked for other people on the autistic spectrum and in particular, resources. Basically it opened a whole new way of understanding who you are and I think that brought us a lot closer.
2. What do you see as the positive aspects, if any, of my being autistic?
M&D: After reading about Aspergers, and being told that most sufferers of this form of Autism are highly intelligent (something that we always knew), and could really focus on one thing at a time, we were glad that you were putting your talents to good use. We are so proud of what you have been able to accomplish up to now and what you will continue to accomplish in the future. We are also in awe of your writing ability. Your communication skills over the internet are beautifully written and very enlightening and educational.
It makes us very happy that you chose not to look back with “what if?”. Being able to look toward the future is a very positive attitude and one that will prove to be very fruitful.
Karen: The biggest thing for me is that you have really changed the way I see the world too. I’ve had to do a lot of my own soul-searching about my learned and ingrained ways of communicating with others, social conventions and norms, the ways that we neurotypical people, or “NTs” take for granted our skill with non-verbal communication. It has made me less afraid of being straightforward and honest because with you, I have to be, and not just because you are my life partner. I can’t expect you to just know when something is wrong or when I might be feeling a certain way – the way other people in my life might be able to tell. I have to tell you and be up front about it. Ultimately it has made me see how much gets covered up – for various reasons – by the neurotypical world – and how important it is to uncover those things.
You are funny and silly and I find, for example, the echolalia endearing. I hope that is not insulting to anyone on the spectrum who is reading this. It makes me laugh but not because I’m making fun of you but because there is a certain whimsical and playful quality to that, and to other things you do that I just love. It’s freeing to me because I get to be playful with you.
I love your love for computers, coding, geekery, gaming, podcasts, screencasts, etc. You get so into it and I think that the computer has brought new worlds to you, including having your own business.
I especially love that we don’t need to constantly talk to be comfortable around each other. I talk all day for a living and I like to be able to come home and we can both be doing our own thing in the same room without having to have constant conversation and both be totally content and relaxed.
I like the way you are and who you are. It’s hard to say what “part” is the autistic part and what part is just who you are because I think it’s inseparable.
3. What kinds of challenges have you faced because of my autism?
M&D: Now you’re asking me to tax my brain. Thirty-eight years is a long time to remember, but I do recall there were many incidents and challenges. Keeping you in line at school was probably the most challenging because it involved many years. Trying to get a diagnosis was very frustrating. I always had a feeling of guilt that I wasn’t doing enough. Aspergers was an unknown back in the 60’s. No one ever suggested Autism or any form thereof because basically you were functioning (or pretending to function), almost normally. You didn’t have a lot of friends but you managed a few (although some of them were very questionable at the time) you enjoyed their company. You were basically anti-social and that hurt me because I was such a people person. We were disappointed that you never finished college but then again you never thought many of the courses were necessary and what would they do for you later on in life. We tried to convince you to stick it out, but to no avail. I think the college experience was a good one because you managed to make friends and had some fun.
Karen: Probably the biggest challenges are social interaction and travel. You are sometimes uncomfortable in certain social situations, which means that at those times, I go and do things on my own with other people. This works out most of the time – although as you know it took a bunch of years to figure out pretty well what works and what doesn’t for both of us. I imagine there will always be situations that come up that we need to work through. Sometimes there are places or events that I go to and wish that I had my partner there – and that you would be able to enjoy them. Sometimes it takes a lot of energy to work things out or come to a good compromise.
Travel can be difficult because it’s hard for you to deal with, even though once we get to our destination, it’s usually fine. It’s a lot of stimulation and energy-drain and I sometimes get impatient for you to decide whether we or you are going to go somewhere.
The energy thing can be hard in general because sometimes I have more energy than you to do multiple things or multitask and your run out of it quicker.
4. What types of communication have worked best and what types of communication have worked the least with me?
M&D: Being your mother, I often felt that I had this inner connection to your thoughts and feelings. There were many times you called me a witch. When I get the feeling that something is not right I call and I am usually right. During those times I feel your pain and frustration and wish that I could just hug you and tell you everything will be better. I think the positive approach always worked for me with you. I try not to ask too many questions when I think you are having a bad day. When asked, I try to answer your questions with honesty and an up front answer. I truly believe that since you have been diagnosed, your communication with the outside world has improved. Knowing what is wrong always helps to prevent bad things from happening because there are medications, explanations and advice as to what to do. I believe that the knowledge of knowing that you are not alone and there are so many other people suffering from the same thing has made you a better person and improved your outlook on life.
Karen: Like I was talking about in my earlier answer, being honest and up front works best. It’s not always easy – it comes way more naturally to me than it did before we got together. It can be scary but ultimately it always brings us to a better understanding of each other. It still makes me squirmy sometimes but it has made a world of difference in all areas of my life, not just in our relationship – which by the way is another positive thing.
Me saying to you, “Why don’t you just….” does not work at all. It makes us both frustrated. Sometimes I forget that if you could “just” do something, you probably would.
5. Is there anything you have learned that you would like to share with other loved ones of autistic people?
M&D: I have learned that everyone walks in their own shoes. You are who you are, and being happy doesn’t mean that everything in life is perfect. It just means that you have to learn to live with the imperfections. Remember, all is not what it appears to be. You have a great support team with Karen, family and friends. To me and Dad you serve as an inspiration in being able to accomplish what you have until now and what you will continue to accomplish in the future. We love you and we will always be there for you.
Karen: I have learned to be more patient and more honest in general. I have learned that brains are fascinating and mysterious things and that everyone’s brain works differently. I have learned that people on the autistic spectrum have as much to contribute to the world as NTs do. I have learned that people on the spectrum have so many things that they can teach NTs: about different ways of communicating, of seeing the world, of showing love and affection and about the nonsensical nature of many of our social norms. I have learned how much NTs take for granted about how we communicate without words – and how confusing and bewildering this can be for people on the spectrum. I have learned that people with autism are lovable.
Temple Grandin will be on the AWN Radio show tomorrow morning to give the Autism Women’s Network her first exclusive interview following the Premiere of HBO’s Original Movie which premiered a few hours ago.
Interview time: Feb 7th, 2010 at 9am PST – 10am MST – 11am CST– 12pm EST (USA)
Use the following link to calculate your time zone outside USA: http://www.worldtimeserver.com/meeting-planner.aspx
Me and K watched part of it a little while ago and it was really good. Gonna watch the rest of it now 🙂
After 3 months of complete immersion, the Autism Women’s Network site is live and open to the public. I am still adding features and fixing the occasional bug here and there, but for the most part, it is done.
Building this site has been an amazing experience for me. I am happy to get to contribute something to the AWN, which is an awesome organization that “provides effective supports to autistic females of all ages through a sense of community, advocacy and resources”. This site is open to all supporters including men and non-autistic people.
The response has been amazing! After just 3 days, we have more than 150 registered users and over 1000 forum posts! I would like to extend a big thank you to all the beta testers and other people who have been helping to get this site up.
A large part of my obsession while working on this site has been in learning Drupal, an open source PHP/MySQL content management system and framework. I have been running a Drupal test site since 2003. About 2 times a year, I dust it off, update it, and try to love it. Usually, I end up hating it, but keep going back because of the large community that surrounds it. There could not be so much Drupal love without a reason.
I am now a Druciple. I will still use WordPress for as many sites as I can, but for larger projects, it is really nice to have the amazing power and endless flexibility of Drupal as part of my web dev arsenal. I look forward to continued work on this site and continued development with Drupal.