Twainbow

People Living Under a Double-Rainbow

Twainbow Admin

PRESS RELEASE: Autistic Pride Day 2019

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Each summer on June 18th, Autistic Pride Day is celebrated worldwide. Using social media and public events, organizations and individuals celebrate the neurodiversity of people on the autism spectrum, many of whom also identify with the LGBTQI+ community. There are several symbols of this celebration, such as the rainbow infinity sign. Another symbol of this celebration is a flag with three vertical lines in the primary colors: red, green, and blue. When combined, these colors create all of the other colors of the rainbow and “represent the overlap of autism onto every other Pride gradient, since those on the autism spectrum are found in every country, sex, race, religion, and sexual orientation.”

The white infinity sign at the center of the flag symbolizes the infinite diversity of the people who the flag represents. Thanks to the design efforts and voting of Twainbow’s online community members in 2015, the Autistic Pride Flag is proudly waved not only on Autistic Pride Day, but every day. Twainbow seeks to educate, connect, and empower those who live under the double-rainbow of the LGBTQI+ community and the Autism Spectrum. The organization is proud to continue this mission with the assistance of a new board chair, Tony Rowe.

Tony Rowe - APD 2019
Tony Rowe, Current Twainbow Board Chair

          Tony began contributing to Twainbow’s mission by volunteering his technology skills. He redesigned the official website and created an early version of Twainbow’s newsletter, which is debuting today. While Tony’s position as the board chair is primarily to preside over board meetings, he hopes to assist his fellow Twainbow leaders in bringing awareness to the challenges and successes of those living under the double-rainbow by reaching out to individuals who are willing to share their stories – stories that deserve to be heard.

Tony’s story began when he came out as gay as a teenager and was later diagnosed with ADD. After being placed in a “special education” class, Tony realized he was not like other people and struggled with bullying and depression. After overcoming this dark time in his life, Tony became active in the LGBTQI+ and mental health communities. In 2016, he was formally diagnosed with Autism Spectrum Disorder without intellectual or language impairment. Since joining Twainbow and meeting others like himself, Tony has found a sense of understanding and belonging and has made great strides in his own personal growth. As part of Twainbow’s leadership team, he hopes to help others do the same and sees no better time to officially begin than on Autism Pride Day.

            In honor of Autism Pride Day, Twainbow invites you to share your story of Autism Pride using #AutismPride2019 on Twitter, comments on Facebook, and comments below this post. Afterwards, check out these Autism Pride events!

Autistic Pride Events 2019
Twainbow Autistic Pride Day Event

Written by Lacie Rowe
Lacie Rowe is a graduate of the University of North Alabama and is currently pursuing her career in professional writing.

“I am Autism”: Diagnosis at 30 – A Broken System

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By: Corey Coloma

In my late twenties, I became more self-aware. I started realizing just how different I was from my peers. I met someone that intrigued me at a local guy’s night with other gay men. Then, one day he shared with me that he was diagnosed with Asperger’s. I had never heard of Asperger’s. I simply nodded and had no idea what to say. Later that night, I Googled it and found its ties with Autism. I couldn’t see the characteristics of Autism I was taught about in my youth in him.

Over time I could see how similar we were. I would watch him and I would focus on my own characteristics. Then, one night another friend asked him how the diagnosis process works and a light went off in my head.

I went home and started Googling tests for Asperger’s and came across one called Aspie Quiz. It was quite lengthy. When I finished, I scored 175 out of 200 on the neurodiverse side and only 34 on the neurotypical side of the scale. I thought I might fit the criteria for Asperger’s syndrome.

Corey Coloma, Twainbow Director

I went to my primary care physician and told her I’d like to go through the diagnosis process. Two months later I went for a visit with a psychiatric nurse practitioner at the same office. After a series of questions, the man told me that I had the signs of Asperger’s. I was then told I would have another appointment 2 months later to talk about it. I couldn’t believe I had to wait two more months.

I became hysterical in the office as no one was helping me. They took me to a therapist there. I started seeing her regularly. I started reading books about Autism. The first book I read was Thinking in Pictures by Temple Grandin. My whole life suddenly made sense to me. Someone knew what it was like living life as I did.

A few months later I learned that I could go to Voc. Rehab to get a new job. When I went there I had to see a psychologist to go through an extensive diagnosis process again because I was informed the previous person was not qualified to diagnose me. People started treating me like I was disabled and not an equal person. People treated me like I was unintelligent despite having an IQ at the top of the charts. The psychologist also found me to be on the Autism spectrum and that I would qualify for services. I was told I needed case management services at the county office. 

“Someone I had only met a handful of times helped determine my fate.”

I went to another psychologist at the county office to become eligible for services and get a personal support worker. My mother had to come in and explain that I had always been the person I was from birth and that I didn’t suddenly become Autistic. They couldn’t believe I was never taken in before for testing. My mother simply told them that, “Corey has always been Corey.” Nothing was wrong with me and there was no reason to take me in because I wasn’t broken and I didn’t need to be fixed. I was her child and she loved me for who I was. They told me I needed to be on Social Security instead of having a job.

I was found eligible for services. I was mistreated through the process. People told me I was “just so normal.” They couldn’t understand how someone like me went 30 years without a diagnosis. Some people suggested that I must be schizophrenic or that I had memorized the DSM to get a diagnosis during all of the months through the different steps. They were surprised that I could drive, that I had a job in sales. That I had a Facebook.

I felt like the one thing in my life that made sense was being ripped from my soul. My diagnosis of Asperger’s was the only thing that ever truly made sense to me and I felt like they were trying to steal it from me. Eventually, I lost the will to live. I was hospitalized and stayed at a facility for quite some time. I went on medical leave from work.

When I got out of the facility I tried to go back to work but I couldn’t deal with anything. I began searching for another way to prove that I was Autistic. I found the Amen Clinic in California. I booked the first appointment and spent almost my entire savings to have brain scans completed and they confirmed that I had mild Autism. I brought the results back to show everyone. I quit my job and started fighting for my future. I went back to Voc. Rehab where they gave me a job coach who suggested that I should be a janitor and ignored what I wanted to become. I fired him and worked with the counselor. I got a new job with my own hard work. I started making changes to better my life.

I rewrote my Person-Centered Information and made changes to my Individual Support Plan for the county. The county office decided I was doing so well that they sent me to another psychologist to be reevaluated. They sent my case manager to the appointment with me. Someone I had only met a handful of times helped determine my fate.

I was found to be ineligible for services, months after first becoming eligible. They found that despite having a confirmed diagnosis of Asperger’s I scored too high on their test to need services. I didn’t realize it then, but I had won. I was free from them. I had my independence and no one could take away my diagnosis. Every time I look to my past I see the progress I’ve made in creating a better future for myself. With my new job, I now provide the same services I was once told I needed.

“We Will Never Be Normal”: The Experience of Discovering a Partner Has Autism Spectrum Disorder

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Research by:
Laura F. Lewis
University of Vermont

"Online forums and lay literature suggest that partners of individuals with Autism Spectrum Disorder (ASD) experience depression, distress, and trauma in their everyday lives, exacerbated during the time surrounding diagnosis. In this content analysis, 29 participants were provided with an online open-ended statement asking them to describe in writing their experiences of discovering that their partners had ASD during their relationships. Six themes emerged, including: facing unique challenges within relationships; insisting partners seek diagnosis; initial shock and relief; losing hope for normalcy; making accommodations within relationships; and wishing for professional support. Marriage and family therapists should help couples minimize blaming and promote self-awareness, appropriate relationship expectations, and mutual understanding. Future research should explore the overall experience of neuro-mixed relationships for both partners."

A Mixed Methods Study of Barriers to Formal Diagnosis of Autism Spectrum Disorder in Adults

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Research By: 
Laura Foran Lewis

Abstract: Delayed diagnosis of autism spectrum disorder (ASD) into adulthood is common, and self-diagnosis is a growing phenomenon. This mixed methods study aimed to explore barriers to formal diagnosis of ASD in adults. In a qualitative strand, secondary analysis of data on the experiences of 114 individuals who were self-diagnosed or formally diagnosed with ASD in adulthood was used to identify barriers. In a quantitative strand, 665 individuals who were self diagnosed or formally diagnosed in adulthood were surveyed online to examine incidence and severity of barriers. Fear of not being believed by professionals was identified as the most frequently occurring and most severe barrier. Professionals must strategize to build trust with individuals with ASD, particularly when examining the accuracy of self-diagnosis.

People with Asperger’s Syndrome May Experience Depression Differently

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Many people believe that people who suffer from Asperger’s Syndrome, which is a higher functioning form of autism, cannot feel and do not experience a full range of emotional stimuli. Nothing is further from the truth. People with Asperger’s Syndrome tend to feel things just like anyone else. They may be less apt at expressing those emotions in ways that society has deemed “normal;” however, that does not mean they don’t feel emotion. A particularly strong emotion they are susceptible to is depression, especially in adolescents and young adults.