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.

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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.

Read the rest of this article…

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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?

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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:

1. Vote via facebook:  When you are signed into your Facebook account, click on the following link to vote: http://apps.facebook.com/pepsirefresh/idea/view/id/651fb4be-a94f-102d-b2ee-0019b9b9e205
2. Vote via cell phone:  Text 101500 to Pepsi at (73774)
3. Vote online:  http://www.refresheverything.com/awn

Thanks very much everyone!

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Exhaling Beauty by Kim Miller

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!

The show consisted of talks by authors Shana Nichols, Rudy Simone, and Liane Holliday Willey, and featured the artwork of Kim Miller.

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.

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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.

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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.

Please vote for us every day in August!

Goals

• To organize 5 Workshops with focus on female specific autism qualities
• To provide online support & mentoring for autistic females & families
• To secure Autism Women’s Network as a non-profit organization

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:

http://www.refresheverything.com/awn

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.

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Alex Plank gave the keynote presentation at the Autism Society’s 41st National Conference on Autism Spectrum Disorders.

Alex speaks honestly and openly about being autistic and connecting with other autistic people online. His website, WrongPlanet.net, has been helping autistic people connect with each other since 2004.

Alex’s keynote is the first of 7 videos from the conference. The panel discussion also features Sandy Yim from the Autism Women’s Network.

All videos can be found on the Autism Society’s YouTube Channel.

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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.

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Radio show link is: http://www.blogtalkradio.com/autism-womens-network/2010/02/07/temple-grandin-gives-awn-first-interview-re-premie

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

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