25 April 2011
I was recently interviewed by Nancy Ward who is an Editor for The Riot! newsletter. Here's the full scoop:
Nancy: Please tell me a little bit about yourself. What is your role with Autistic Self Advocacy Network, and what else would you like Riot readers to know about you?
Elesia : I am the National Chapter & Outreach Coordinator for Autistic Self Advocacy Network (ASAN). I also work with several other organizations including Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) and Autism Women's Network (AWN). Classical ballet is a passion of mine. I love training and performing, in addition to reading and writing both fiction and non-fiction.
Nancy: How do you use technology in your daily life? And what works best for you?
Elesia: Technology is the mainstay of my job. I would be lost without my MacBook! ASAN Board members, employees, and Chapters are based all over the States. We use the Internet to communicate via email and Instant Message (IM) chats. Phone calls account for an extremely small percentage of communication.
What works best for me? Email or IM chat services such as Gchat or Skype--no phone or video, text only.
Nancy: Why is technology important to you?
Elesia: Not only am I Autistic, but I am also Deaf. The Internet breaks down--if not smashes--communication barriers often presented through traditional work styles. For Autistic people who struggle with communication issues, and/or sensory overload, connecting via Internet can provide a much better option for meaningful participation. Conducting meetings online when possible via an IM chat service is extremely important. Phone conversations and/or meetings can pose a problem for Autistics who have Auditory Processing Disorder and who might struggle with voice as opposed to text. IM chats also often provide a workable solution to address social anxiety issues.
Melanie Yegeau, an ASAN Board member, brought up a lot of points when we recently spoke about technology. In summary, at root, the digital divide issue has to do with accessibility (very broadly speaking). Adam Banks' book Race, Rhetoric, and Technology breaks down access into some very handy-dandy categories.
-- First: there is material access -- that is, having the means to own a computer, pay for the internet, etc. (An aside: This is certainly an issue that Autistic people, and disabled people more generally, face. Unemployment and underemployment rates for Autistic people are high.)
-- But access isn't just about having money to buy things. This is a fallacy. It also involves functional use: that is, understanding how to use technologies in fruitful and productive ways. Social media can be of immense benefit to Autistic people, especially in a self-advocacy sense. But we're not necessarily trained to be self-advocates, and we're certainly not trained (at least not very often) to use social media for advocacy and activism purposes.
-- According to Banks, another layer of access includes critical use: that is, understanding the advantages and disadvantages of technology, and having the option to resist use of certain technologies. Again, this can present a problem for Autistic people: In what ways are we afforded the right to refuse to use something -- be it a specific computer program, certain AAC device, picture board, etc.
A lot of positive things surrounding critical use have come up for Autistic people. We don't just use social media because it's there -- we critically analyze its positives and its drawbacks.
-- Banks says that the most encompassing form of access is that of transformative access. This is key to self-advocacy, and key to surmounting the digital divide. Transformative access involves direct participation in the very design of certain technologies. I feel transformative access is another name for universal design. A technology cannot be truly accessible unless its users are also its designers.
Nancy: Given all the different types of technology tools that are out there, how are you able to get information out to ASAN members quickly, especially for things like legislation and budgets that might need quick action?
Elesia: Here I am answering Internet to every question. And it's time to do so again. Internet. Internet. Internet. Smiles. Honestly, it's really simple: We send mass emails, post to listservs, post to social networking sites such as Facebook, and connect with committees, organizations, and other persons within the broader disability community.
Nancy: Members of a self-advocacy group might have a different understanding about how to use technology. How do you teach somebody who is just learning?
Elesia: Part of my job involves teaching Autistic self-advocates how to use technology. Sometimes, it boils down to me sending an email to a potential ASAN chapter leader with instructions on how to go about downloading and signing into Skype. From there, we might have an IM chat--including step-by-step instruction--on how to set up a Meetup site to advertise their chapter. In a nutshell, if someone can understand how to send and read a basic email, that is all I need to do my job efficiently.
As for accommodating people who are just learning how to use technology, this is a goal we're continually working toward. Not all Autistic self-advocates have access to computers, and some individuals may have a difficult time using computers, reading instructions, etc. There aren't always easy answers, which leads me to note what access and self-advocacy are about... constantly brainstorming on what we can do and how we can do it better and more inclusively.
Nancy: Do you think that technology is going to be something we use in the future as a tool?
Elesia: Yes! And I wouldn't want to be a part of a future that shunned technology. Speaking of technology, I just got a new Apple iPhone 4. Now I am connected wherever I go via plane, train, or automobile (as long as there's a service tower near). Within the span of 15 minutes, I can:
1. Have an American Sign Language conversation with my husband using FaceTime Video Call
2. Text message my lovely boss, Ari Ne'eman, and request an extension on an assignment because it got put off due to my excessive YouTube ballet video watching (kidding Ari!)
3. Download the latest e-book on Disability Rights
4. Send an email
5. Surf the web, or post a message to Facebook
6. Chat on Skype
All of this happens from a phone the size of an extremely thin camera. Will smartphones and technology be something we use in the future as a tool? You bet! They are the future!
08 April 2011
Melody Latimer is an active Autistic adult. She lives with her husband and two beautiful Autistic boys. She volunteers at her sons' school, directs the Dallas-Ft. Worth chapter of the Autistic Self Advocacy Network, and is also a part-time employee for ASAN. She runs the website ASParenting for Autistic parents and manages the corresponding email list. Melody is working on a book about Autistic parenting, which is meant as a guide to neurodiverse parenting.
Elesia: When did you receive a diagnosis on the autistic spectrum?
Melody: I received my initial diagnosis in the summer of 2008. This was a year after my oldest son was diagnosed and only a few months after my youngest was diagnosed.
Elesia: Autistic people who are diagnosed later in life often share that an ASD diagnosis does not seem foreign, but more like an official definition that finally sums up how they have experienced the world throughout their lives. What are your thoughts?
Melody: Before I was diagnosed, I had been diagnosed with a plethora of anxiety disorders and depression. Most of the symptoms for all the diagnoses combined easily equaled up to Autism. To me, it wasn't necessarily something that finally summed my experiences, but what combined all my previous diagnoses. There was a slight deviation from where I thought all those diagnoses came from, especially OCD and Social Anxiety. I now don't even try to treat those as I feel they can be useful to me.
Elesia: You're the mother of two boys on the spectrum. Being Autistic yourself, do you feel you have firsthand insight into what your boys are experiencing? If so, please share a few examples.
Melody: I definitely think that being Autistic has helped me understand my boys. I remember, before any of us was diagnosed, my oldest would push this bus that sang “Wheels on the Bus,” but only when the wheels went round. He got down on all fours, and rolled it back and forth looking under the bus. My in-laws thought this was strange. But I knew as soon as I turned it upside down why he was doing it. The speaker that sang was underneath the bus.
I use this skill all the time. If they are having a particular issue at the school, I will go in and observe and tell them things that they could change. Most of the time my changes are right on. It also helps to explain to their new teachers why they do certain things. Autism doesn't explain everything, but the things it does, I definitely feel I have an advantage over others.
Elesia: What are some difficulties you face being a parent on the spectrum? All parents--regardless of whether disability is present--can become overwhelmed and stressed. Do you happen to face any unique challenges being an Autistic parent?
Melody: Some of the biggest difficulties I have aren't necessarily to do with parenting--most are related to being a parent. Going to social events has always been difficult for me, but as a parent, even to two Autistic boys, you are obligated to go to things. Birthday parties, PTA events, school concerts, and so forth are just not my strong suit. I continue to do them because I know that my kids exposure to these from a young age will help them along. I never did any of that as a kid and I think it left me at a disadvantage of learning how to properly regulate myself.
As for unique challenges, I think the sensory issues are the worse. I have auditory sensitivities, so crying, or whining, or sometimes even just constant talking can be really difficult to take. I'm also tactile defensive, so light touch has always been a problem. When the boys were babies, I would have to lay them on the floor, and lay beside them, because their little movements were too light. I wanted to give them plenty of love and nurturing, but I couldn't hold them for more than 5 minutes without becoming very uncomfortable. In the end, I improvised a solution that I think worked out quite well.
Elesia: There's a notable percentage of non-autistic parents on the spectrum who make it their mission to find a cure for their autistic children. Other parents accept that their child is autistic and instead aim for securing services in the here and now to assist their children. What is your experience and opinion?
Melody: I'm definitely a here and now person. I will say that the science behind all their cause and cure search is interesting, but that's the scientist in me. The implications of that research is harmful to us all. Funding for cures only means taking away money from research and services to make their children's lives successful. We CAN lead successful lives! I want my kids to grow up, live on their own, work and be happy. If they get married, great. If they have kids, even better. But that's not what my job is as their parent. My job is to give them the tools to succeed and be happy. That is all. Services is one of the many ways I do that, and no research into a cure is going to help me in my job.
Elesia: How do you feel when you navigate the waters of hanging out with other non-autistic parents of autistic children? Do you feel accepted? Or do you feel at odds? Or both?
Melody: It really depends on the parent. My oldest son has this great friend. They love playing together. He's accepted by this other boy. And this boy happens to have a little brother who is autistic. This means I must be around their mother if they do play dates (which I do not like to deny my children of). The boy's mother happens to be a curebie. She tries to convince me my other son isn't Autistic. She thinks I should try all these supplements and diets.
On the other hand, there are a lot of parents who know my diagnosis who treat me no different. Parents of other Autistic kids at school, at support groups, and so forth are all very kind to me. We know not to bring up the subjects we don't agree on. Most are all for Neurodiversity principles for “people like me” (whatever that means). They also think it's encouraging that I have gotten where I am with no intervention or services.
Elesia: What do you want to teach your boys about what it means to be Autistic? Have you had a conversation with either of them about autism? If so, what did you make a point to discuss?
Melody: We haven't really discussed it with either of them. They're 6 and 7. While highly intelligent, they just don't understand that others have different thoughts and feelings, let alone different neurology. We try to teach them for now that it's okay to remove themselves if they are overwhelmed. We let them stim when possible and explain to them why they cannot in certain situations, ie. safety concerns (some spinning is just dangerous around a lot of people).
In the end, I want to teach them that they are different but still as equal as anyone else. I want to teach them to stand up for themselves while still being respectful of others. I want them to understand they can accomplish what they want and that all people need help from others. Being Autistic just means they think differently, they experience things differently. It does not make them lesser or greater. It doesn't make them exempt from the lessons in life. It may mean extra work or extra help, but it does not mean they cannot lead full and happy lives.
Elesia: Some parents tell their autistic children that they love them but not autism. Do you think this is damaging to autistic children? If so, how?
Melody: I think it gives a child the wrong impression. Damaging, I don't know. I think it depends on the child. Autism is who they are, how they think, how they experience life. Without Autism, they would not be who they are, but someone completely different. The neurology makes their whole world. I think many of these parents put more focus on the deficits and not enough on the benefits of their child's Autism.
Elesia: You are currently working on a non-fiction book addressing being an Autistic parent of children on the spectrum. What are 3 main points you wish to drive home? Please give examples.
Melody: In my book, I want to give normal parents some sort of way to raise their child while respecting their Autism. Autistic Parenting gives us all an insight into our Autistic child. In the book, there are three ways I'm approaching teaching typical parents about their Autistic child's world.
First, I want parents to feel the way their child feels. In one section on sensory difficulties, for instance, there is an exercise to put a piece of Velcro on their collar and where it there all day. Obviously, this will only give them understanding of their child if they are tactile sensitive. But my hope is that feeling it will help parents come up with clothing that feels good to their child. It's not about pitying the child, but experiencing to come up with better solutions. Each chapter has a section like this.
Second, I want the parents to deconstruct their preconceptions then redefining and reteaching them. With all Autistic children, the “norms” are just not going to be the same as they are for typical children. Parents often forget the development in developmental disability. Our development is just not on the same track. Parents really need to focus on their child's development, and not where the charts say they are supposed to be. Only then will they learn to teach their child is to know where they are truly at.
Last, I want parents to see how “we” did it. The Autistic parents among us have developed skills for a vast array of issues. So in each chapter of the book, there will be a personal story from an Autistic parent. They will talk about their issues that relate to that chapter, how they overcame them, then how they help their Autistic child learn those same skills. This is more than a feel good story. It's meant to show that most problems have solutions, which reinforces the lesson learned in deconstruction and rebuilding.
In the end, it's up to the parent to decide the course of action for their child. I just want to give them the skills to understand what their child is going through, how Autistic parents overcame any issue, then how to develop a plan to come up with similar solutions for your own child. It may require therapies, interventions or time, but there is a reason for everything, and hopefully a solution too.
Elesia: You run a website called AS Parenting. Tell us about it.
Melody: ASParenting is often misunderstood by the title. Many people think it's for parents who have Autistic kids. It's actually the other way around, it's for Autistic parents. I blog about my experiences with my kids, send out advocacy information and manage an email list for other Autistic parents. Those who are members do not have to have Autistic kids, just be Autistic themselves. Other welcome people are Autistic adults who are thinking of parenting. Our issues are different from those of non-autistic parents. Some members are hermit-like, others hold down jobs, and others are fervent activists. However, we have a lot of the same gripes or problems. So it's often good to go there for support. Parenting groups don't often understand our Autism, and Autistic groups don't really know how to respond from lack of experience. ASParenting gives Autistic parents a happy medium.
[Ed. the capital A used in the word Autistic, denotes the Autistic community, which is much like the Deaf community. There is a difference between being Autistic and autistic.]
01 April 2011
Happy birthday to you, happy birthday to you, happy birthday, dear Aspitude, happy birthday to you! And many mooore...!
Wow, has it been 2 years already? And ya'll are still hanging around? Aww, thank you! No party on a massive yacht this year. Maybe next year...
[This post was originally a 3rd birthday post. But then Silly Editor realized Aspitude is only 2 years old. Time for a math class--oy vey! Nothing I can do about the 3 candles on the cupcake in the photo above. Enjoy!]