All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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08 April 2011

World Autism Interviews: Melody Latimer/Texas

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.

E: 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.

E: 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.

E: 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.

E: 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.

E: 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.

E: 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.

E: 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.

E: 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.

E: 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.

E: 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.]

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