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.
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.
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.
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.
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 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.
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.
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.
Writing on the iPhone. Hard to breathe. Shaky. Strangely okay besides that. Sometimes writing helps. Been very busy lately. All Drupal all the time. Besides from the insane learning curve and non-intuitive UI, I am in awe of its power and flexibility. After more than 15 hours of video tutorials and reading tons of docs, I am finally understanding how it works and how the code is organized. I am learning while building a site for an awesome organization. Will link to it when it is done. If all goes according to plan, it will launch around Jan. 1st, 2010. Not mentioning the org. because there is a board and I don’t know if things like that have to be decided about, but if someone who knows the answer and wants to post it in the comments, go for it 🙂 I haven’t used Drupal to build a site since version 4.1 other than keeping my test site updated. Been wanting to learn it for real for a few years so very happy to finally get around to it. Still, it makes me appreciate the simplicity and clean code of WordPress even more than I already do. Been having some small jobs besides from that.
Me & K went to Monterey for K’s 40th birthday and had an awesome time. Happy birthday K! We went to the Monterey Bay Aquarium to see the seahorse exhibit. It was amazing. We also saw lots of sharks and rays and other random sea creatures. We stayed overnight at a nice bed and breakfast and got home the next day in time to give Halloween candy to kids. Not so many kids this year.
Still hard to breathe but not so dizzy anymore. Sometimes it is kind of annoying to be me but most of the time I like it. Enough writing for now. I think it helped some.
The Autistic Self Advocacy Network and other organizations representing the Cross-Disability Community are distributing this joint letter to the sponsors, donors and supporters of Autism Speaks following the organization’s latest offensive and damaging Public Service Announcement, “I am Autism“. If you are an organization that would like to sign on to the letter, please e-mail ASAN at firstname.lastname@example.org before Close of Business Tuesday, October 6th, 2009. If you are an individual who would like to join ASAN’s upcoming protests of Autism Speaks in Ohio, New England, New York City and elsewhere across the country please e-mail ASAN at email@example.com Thank you for your support and please feel free to distribute for additional signatories.