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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09 March 2009

World Autism Interviews: Phoebe Loomis/Portland, Oregon

Semiotics: the study of sign processes.
Phoebe and her daughter Raven.
Phoebe in first grade on Grandparent's Day.

Interview with Phoebe Loomis

Phoebe Loomis lives in Portland, Oregon. She is diagnosed as Asperger's autistic. Her oldest daughter, Raven, is autistic. Phoebe co-codirects Autistic Self Advocacy Network - Portland (ASAN-PDX). She aspires to write and publish a graphic novel. Click here for her MySpace link.

E: Tell me about how you stumbled upon the world of autism.

Phoebe: That's hard to pinpoint. I think I had an abstract concept of what autism was when my mother worked as a custodian at an elementary school with an extensive program for children on the spectrum. She would come home and tell horror stories of cleaning the bathrooms. I think we all were exposed to Jenny McCarthy's crusade against Autism
but I never had an educated view until my daughter was diagnosed and I immersed myself in books on the subject.

E: Your oldest daughter, Raven, is autistic. When did you first suspect that there is something unique about Raven?

Phoebe: I think I knew there was something lagging with her communication at about 6 months of age. It was always hard for me to say something was "off" about her when I saw so many similarities with myself. How do you notice someones lack of eye contact when you don't meet their gaze? The first real red flag was when she got into the habit of hitting her head against the wall. Seemingly unprovoked she would launch herself full force against the walls. If I was holding her she would hit her head against me. She would even grab anything nearby that was hard enough to hit against her head. When I heard Michael Savage's despicable words about autism being fabricated 90% of the time I broke into tears and knew it was time to get Raven diagnosed.

E: How did you feel when she was diagnosed?

Phoebe: I felt like I was finally taking the right steps for her. She had been having the issues with self-injury I mentioned and it was known within my circle of friends and family that something needed to be done. I
think the word "autism" was in the air for at least a year before she had the appointment for diagnosis.

E: How do you feel about the current services she is receiving?

Phoebe: I am so thankful to have all resources available to her that are. She goes to neurosensory therapy once a week in Oregon City. I noticed a huge drop in her self-injurious behavior after only a handful of visits. She is in an integrated classroom with about 14 students. Half are typically developing and the other half are children who fall into the
category of "special needs" like Raven. There are a number of teachers and a speech therapist who comes in weekly.

E: When do you disclose your daughter's diagnosis to others?

Phoebe: It depends on the context. With anyone who was already a part of our lives it was almost a celebratory announcement. When other young children ask me why she's ignoring them I'll give the simpler explanation that she has trouble with sensory issues and relating to others.

E: How do you handle ignorant public comments?

Phoebe: With children especially you never know what you are going to hear. If Raven is having a meltdown in public it's not uncommon for another young child to ask me if she's okay or what's "wrong" with her. I don't have a terrible time with type of innocent ignorance but I do have trouble with adults who have already made up their mind what the word "autism" means. I get a lot of NT people spouting Curebie nonsense who don't even know they are doing it. I guess it's convenient to be Asperger's autistic myself since my lack of eye contact tends to keep most people from
starting unsolicited conversation with me.

E: What do you feel your daughter needs most in order to reach her maximum potential?

Phoebe: I think she needs the type of understanding and supportive environment that she is receiving from school and therapy. Visual schedules have proven to work amazingly well for her. I think communication between myself and any teachers or therapists is essential. Now that I have a clearer understanding how my own brain functions I have no problem asking for everything important to be given to me in writing.

E: After Raven's diagnosis, it came to your realization that you are also on the spectrum. Learning that you are on the spectrum, later in life, does not change who you are and what you have always felt inside. How would you explain this key point to others?

Phoebe: The way I have explained it is that I haven't learned anything new about myself but I have learned so much about how a typical mind works. I had always been told, and assumed it to be accurate, that I just wasn't trying hard enough in life. I scored very highly in aptitude tests but couldn't seem to do things that were so very simple for most people. Things such as reading non-verbal cues and facial expressions were logic based rather than instinctive. I hadn't realized the energy I put into things that are natural for the majority. One of the greatest epiphanies I had was in discovering it wasn't all that uncommon for Aspies to experience "Wrong Planet Syndrome". From the youngest age I can remember I had an elaborate mythology built around Plutonian origins.

E: As an adult on the spectrum, what services and accommodations--that you need most--are currently lacking?

Phoebe: Right now I am having a difficult time getting a formal diagnosis. I honestly don't even know what my options are. I would like get back into school for Fashion Design and perhaps get the option to be away from any fluorescent lighting.

E: What would you like to share with people who have a hard time recognizing that Autism Spectrum Disorders are not a one-size-fits-all package?

Phoebe: I think it's crucial that people don't overlook the word SPECTRUM. Many people have already formed what they think the word "autism" means. Within the Autism Community there even seems to be a line drawn firmly between the terms "autism" and "Asperger's Syndrome" as if there is something so terrifying about the term. I refer to myself as being Asperger's autistic.

E: What advice do you have for parents of newly diagnosed autistic

Phoebe: I would definitely say read everything you can get your hands on but don't let anyone else make up your mind. Research is crucial.

E: Please share something you think is extremely important for the public to know about autism.

Phoebe: Autism is not a disease to be caught or cured. For many people it is necessary to get treatment for co-morbid symptoms such as anxiety or obsessive compulsive disorders. I am not against any one person getting proper therapy or, if need be, pharmaceuticals but I think the medical community is too apt to prescribing medication at young people without really delving into what their core issues are. It wasn't so long ago that exorcisms were held on autistics who were believed to be possessed.

Phoebe would like me to include a link about semiotics, which is the study of sign processes (semiosis). Click here to read more.

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