What Made Me Want to Get Tested?

I get asked that so much, and I’m always taken aback. Why wouldn’t I, a person who has never understood me, want to understand myself? Paris, my oldest daughter, was referred to the Georgia Early Intervention Program, Babies Can’t Wait, by her pediatrician in June 2019 at 18 months after testing high on the M-CHAT, Modified Checklist for Autism in Toddlers screening. Paris did not

• show interest in other children her age
• show any imaginative play such as pretending to talk on the phone or loving baby dolls
• use her index finger to point and show us things
• give eye contact
• imitate us making different faces
• respond to her name (unless I did a specific tone)
• not flap when she got excited and ran……

Riley, my youngest daughter, was referred to Babies Can’t Wait, by her pediatrician in August 2020 at 15 months after testing high on the M-CHAT. Riley showed some signs that were similar to Paris but some that were completely different.

https://youtu.be/PlpdHpjB1mk

Riley’s referral was really what solidified things for me. Paris’ divergence manifest mostly in her sensory, communication skills, social avoidance. Paris was walking, jumping, moving before other children. She has issues communicating verbally and non-verbally and acknowledging and being with other people. However, Riley’s divergence was different. Riley was a social butterfly who said her first words at 8 months. However, Riley struggle with gross and fine motor, and didn’t walk until 15 months. She also had obvious anxiety to change and the unknown, which could be anything and everything when you are a baby and toddler. Paris avoids all eye contact and honestly your whole existence unless you are part of her trusted circle. Riley will give you all her eye contact and attention if you are giving her the same and engaging her. However, you see signs of her discomfort. With Riley I saw more stories of my childhood. Like when my first words were jumbled sentences. Like how I never learned to ride a bike because I was “too scary”

As each girl got diagnosed and older, I researched, network, and engaged more with autistic adults around me and online. I also researched more information because we learned Paris had sensory processing disorder and we experienced our first sensory meltdown. This is truly when I said, “Hold on, I do that”. We learned about stimming, masking, sensory seekers, sensory avoiders, sensory combinations, burnout…… So let me explain me.

Who is Supernova Tash?

My whole life, when I’m around people, I take note of the people in the room: the mood, the environment, everything, then I mimic or emulate what I think they need or want from me. I’ve never felt completely comfortable in any social situation I’ve ever been in. I’ve never not felt the need to mimic, or emulate, and people please, even with family. I am who I think people need or want me to be. The only two people I’ve ever felt comfortable to be completely myself around are my husband, and my best friend from college. However, I unintentionally mimic and emulate them when out in public with others. It caused a small riff with my best friend in college. It annoyed her. We had a big blow up (for us) fight about it. Then repaired. This has also caused every relationship I’ve been in to be a passionate, loving, whirlwind romance where men have fallen in love with me. The issue, they usually fell in love with the person I thought they wanted and emulated after observation and active listening. So eventually I would get burned out being everything they wanted and needed and disappear or become the victim. I have been engaged a lot. I have actually loved two men. One I’m married with now.

I sucked my fingers regularly until middle school in school. I sucked them regularly at home until like Sophomore or Junior year of high school. They still find their way to my mouth in a crisis. I play with my hair when stressed. So much so, that my senior year, my hair started falling out and I had missing patches. When I was a kid, my family had a joke I ran like “a crackhead”. I was flapping. I would do a dyspeptic rasp regularly as a vocal stim. I would repeat numbers over and over again rhythmically as another vocal stim. I bounced and jumped a lot. I still bounce when I walk now . I twerk a lot now because I’m bouncing.

I used to read and focus on books so much I would walk while reading and fall in ditches or almost get hit by cars. The one time I got in-school suspension, my Spanish teacher gave it to me for hiding a fiction book inside the Spanish textbook and reading during class. My mom would punish me by taking my books. I would read 2-3 books at a time and switch them out when tired or uncomfortable with the other. I would walk 3-4 miles to the Library as a kid and take all my younger sibling with me. I can immerse myself in a book and lose space and time still.

Textures! I need to feel soft things on my skin regularly. I need to rub them. Before children, all my pajamas where satin slips, not because I was sexy (that’s not my thing), but because I needed to feel soft things on my skin to relax. I am obsessive about my skin being soft, mostly because I regularly rub on my own skin. I am the princess in the pea. One cookie crumb, and I can’t sleep without clearing the sheets. I can’t eat oatmeal or quinoa no matter how good the flavor.

I dissociate a lot. A dissociation is a break in how your mind handles information. You may feel disconnected from your thoughts, feelings, memories, and surroundings. It can affect your sense of identity and your perception of time. I talk about myself in third person a lot. I talk to myself a lot. I have conversations with myself a lot. When people or pets die I dissociate because I don’t feel the same way they do and I don’t know how to mask it. When I become overwhelmed at gatherings the people turn into a movie set I’m producing or watching. I don’t have a place in it until someone ( My husband or mom) bring me back.

When I was a kid, I was tested, and they put me in Gifted.

When Did I Finally Decide to Get Evaluated for Autism?

Paris was official diagnosed right before 2 years old and at the time, Riley was was being referred to the Babies Can’t Wait program. So my research was making me see all those weird things I knew about me live in my children. Then articles and research like this were also making me question if I had autism. Also, remember we had those extremely high risk quad test results for a genetic disorder I discussed in my Early Signs of Autism post. However, there was a definite moment for me. Paris was sick and having a bad day, so I made her a sensory bath. I added salts, blue food coloring, lavender essential oil, and bubbles. She loved it. She’s my sensory seeker. While in the bath and playing with bubbles she began to do a dyspeptic rasp as a vocal stim with a look of pure bliss on her face. Then she laughed. I immediately went back to the moments I used to do this alone as a soother. I said in my head, “Yeah, you need to get tested”

The Diagnosis Process

First, I did a bit of research with my insurance plan, so I knew I had to have a referral from my PCM, Primary Care Manager/Provider, to have any of the process covered under my insurance. I explained my concerns and experiences and my PCM said she had my back just based off the fact both Paris and Riley had autism. However, she asked me if I had done my research on an autism center that she could refer me to. The problem is not many autism centers diagnose autism in adults. There are numerous resources and centers for children, and some of those centers offer resources for adults who already have a diagnosis but they do not care for or have resources for adults looking to be diagnosed. Then, as a regular as laywoman with no medical background. I wasn’t even sure who could diagnosed me. At first I thought it was a neurologist because it’s a neurological disorder, but nope, it’s a psychologist or psychiatrist who does the diagnosis. Many of the neurologist were more doing research studies on autism for hospitals and universities. Then I had to find a psychologist who actually specializes in ASD and ADHD. Thankfully, Paris’ (and now Riley too) autism center loves me, so they did some reaching out and found me some names and centers here in GA.

Then, once I found the few and the proud, I had to run them through my insurance’s database to ensure they were in network providers and therefore covered. Once you find them, you have to go through their offices’ process of in-processing and have them reach out to your insurance for approval for referral. Only once that referral is approved can you make an appointment. Then most places had long waitlist due to a pandemic. That appointment is for a preliminary evaluation. And they usually still have copays that are steep unless you have met your deductible. It was really difficult as an adult to navigate that process. However, during that preliminary evaluation, the psychologist was amazed I wasn’t diagnosed as a child.

I had a lot of privileges and help and this was still hard. I had Paris ASD diagnosis and Riley acceptance in the State early intervention program to back my concerns. A lot of people don’t even have their concerns taken seriously this late. I had a lot of privilege, support, and good luck and it took over a year to get my official diagnosis. It took 8 months for Paris, and it took 20 months for Riley thanks to the pandemic. What about those without all this support, privilege, and luck?

Resources

The only resources I currently feel comfortable sharing:

ASAN, Autistic Self Advocacy Network

An Advocate’s Guidebook for Caregivers of Autistic Kids from  Peace I Give and Unmasked, two Autistic Adults