Advocating for Others by Advocating for Myself

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By Chana Bennett-Rumley

There was a time when experts thought the autistic female did not exist.

I am here to tell you, that is not the case. I am 38 years old, and I found out I have Autism Spectrum Disorder last year. My life has been hard, and my struggles were seemingly imaginary to the world around me, until recently. The discovery that I am Autistic came after both of my 2-year-old fraternal twin sons were diagnosed with autism late in the summer of 2016. They were two and a half at this time and I was very confused about the diagnoses. I did tons of research on autism because I knew absolutely nothing about it. I was focused on my boys, so it took me a little while to figure out that autism presents differently in boys than it does in girls.

It was information that eventually changed my life.

I began looking into girls and women on the spectrum in late 2016, but it wasn’t until mid-2017 that I started intimately recognizing myself in the research I was exploring about autistic girls and women. My sons had gone through early intervention, and were starting various interventions and therapies at this point. I was meeting many therapists who were all explaining to me how they were approaching each child’s treatment. We were juggling many sessions in our home, and many hours of in-center sessions. It was overwhelming because all of these approaches were completely foreign to me and completely unlike my own childhood.

My mom was very abusive, and my dad was forcefully kept out of my life until my mother abandoned me when I was a teenager. I lived with my widowed grandmother as a teenager who relied heavily on my uncle to help raise me. I knew nothing about autism, nor did I get any accommodations as a child. My mother would have made fun of me if I accepted extra help. She was not the type of mom that focused on me unless she could use me to get something for herself.

To her, I was smart and pretty, so she refused to accept that I needed extra attention in any way that wasn’t focused on advancing these two traits. In a way she engrained in me that these two things were going to be what made me special in this world. This served me very poorly throughout my life.

My personal participation in the boys’ home sessions was very difficult because I was having a hard time being a mom. I had a really poor example of what a mom was supposed to be to a child in my own life experience, so being the kind of mom who was involved was important to me. I just didn’t know how. No matter how prepared I was by waiting until I was 32 to have babies, reading parenting books, getting a degree in sociology, or having a relationship with the father of my children since I was 21 years old, I was not prepared to be the kind of mom that I thought I wanted to be for my kids. The boxes were all checked on my list of accomplishments, but I was not functioning very well and no one seemed to have an explanation as to why this was the case.

At the time, I knew I was having a difficult time being a mom.

I couldn’t seem to keep up with my life, no matter how hard I was trying. I am pretty sure a lot of my sensory issues and isolation were seen as symptoms of mental illness when I asked for help. However, I was experiencing major sensory overload and exhaustion from trying to parent twins who also had their own unique needs. These realities were mixed with properly diagnosed PTSD. I had been treated, on and off, for chronic mental health issues since I was in my early 20s. As an adult, I had been hospitalized multiple times for mental health issues. Multiple doctors and therapists had seen me for a at least 15 years in Denver, Colorado. I was misdiagnosed with multiple terrifying mental health conditions that were expected to get worse with time. I was given medications that caused serious consequences to my mental and physical health. Not to mention my financial and social problems caused by the side effects of the medications and the constant advice that I needed to change to be accepted. The mental health professionals in Denver mislabeled me many times over the years, but autism was never mentioned.

As a matter of fact, no one had ever mentioned autism to me in any capacity until it was about my kids.

When I talked to my mental healthcare team about my concerns that I was autistic, they pretty much disregarded me. I was told over and over that there was no way I was autistic and to just forget about it and focus on my mental health. A doctor told me that he would be “shocked” if I had autism. It took a lot of searching to find someone to give me a referral for an autism assessment. I had to vehemently demand this referral in writing from my family doctor. My persistence helped me get that referral. With that referral I was able to find an amazing doctor who was able to test me.

In June of 2018 I was tested for autism spectrum disorder and the results conclusively proved that I do, indeed, have autism. It was upsetting in a way because I had already been through so much, but my diagnosis was also relieving because I was finally able to focus on getting the proper help.

After that major life hurdle had been cleared, I found out professionals do not regularly see autistic women. Most of the professionals I have talked to in the autism community have rarely, or never, seen anyone like me. I have made it my mission to advocate for girls and women on the spectrum to help inform people about gender differences in autism, because I previously had little luck finding current and relevant information about Autistic girls and women.

I hope that this introductory insight into my world can help others like me and their families.

I hope it creates an accepting environment where talents can be discovered and utilized to create a safer and more meaningful human experience overall. I don’t claim to know everything, but I know what it is like to be me, and I am learning to accept it.

Chana Bennett-Rumley holds a degree in sociology from the University of Colorado. She is the mother of two Autistic fraternal twin boys. She was diagnosed with autism herself following her sons’ diagnoses, and believes it saved her life. Follow her on @millennialTmom on Twitter and @themillennialtwinmom on Instagram.