A Little Bit Autistic

In lieu of celebrating April as Autism Acceptance Month, I thought it would be appropriate to acknowledge my not quite autistic diagnosis last year. Buckle up, friends. This one is a doozy. After reading several articles late last fall, I became aware that I have been experiencing quite a bit of autistic traits throughout my life. 

Culturally Misunderstood Neurodivergent Females 

It all started when I learned that women experience ADHD much differently than men. After discussing my forgetfulness, wandering mind, fidgeting/adjusting constantly, and countless experiences with hyperfocus, my doctor confirmed that if these consistent struggles which have effected me since childhood were ADHD symptoms. With some further investigation, I was diagnosed with ADHD in my mid-thirties. 

Unlike the research most commonly conveyed, not all who have ADHD are physically hyperactive. Females tend to have symptoms which are a bit less obvious to the naked eye and therefore were not included in much of early medical research, diagnostic tools, or symptom guides. The idea that gender needs to be considered when creating a diagnostic tool is as ridiculous to me as needing to have gender specific symptoms listed when discovering if you have a common cold. I understand that males are valued as more valuable in our society, but I can’t quite comprehend why the symptoms are often separated. 

Regardless of how symptoms of ADHD are communicated, being diagnosed has had a positive impact on the quality of my life. There has been great benefit in treatment, yet it has was lackluster over time as many of my symptoms which I originally thought were linked to ADHD were identified as not related to ADHD. As I launched my podcast and book last year, I was on social media a bit more and found a lot of people I could relate to sharing about traits or symptoms I thought were ADHD, or just things that were unique to my personality, were actually autistic traits. Apparently many autistic people have a dual diagnosis of ADHD & autism, but because these two conditions have contradictory needs and traits, misdiagnosis is common. This awareness initiated my deep dive in researching autism and the dual diagnosis AuDHD (ADHD + autism). While I won’t go into my understanding of AuDHD much, this may be helpful info for some.

Quickly, I realized a familiar trend in autism and AuDHD research. Similar to ADHD, female autistic symptoms were not measured by research due to female traits presenting much differently than in the more commonly studied males. While the core autistic brain organization tendencies are similar, women tend to experience less social difficulties due to their obsessive special interests being more socially focused or socially acceptable. It is also worth noting that women are often taught more directly to unlearn autistic traits or to hide them by masking or learning to manage their symptoms in front of others and self soothing in private. Due to young girls generally being given more corrective social direction, autistic women are generally more socially accommodating. Autistic women are also more likely to communicate their sensitivity to how others feel even though it takes significant time to process their intense emotions related to social interactions and experiences. 

Most autistic traits were easy for me to understand, and over time I realized there was deep comfort in understanding autism because of my awareness that there are people who could relate to my daily struggles. Noticing my sensory sensitivity, emotional regulation difficulties, executive function issues, and repetitive behaviors were all in a healthy and normal range for an autistic person helped me accept these struggles I have tried to correct in myself. With over a year of processing and learning how to communicate my understanding of my autistic traits, I have looked back at my life and noticed a combination of supportive and critical voices contributing to the way I view and understand my needs and feelings. 

A Childhood of Safe and Unsafe Environments 

Looking back, it is easy for me to notice that the way my mom gave me space to address my own needs allowed me to feel normal; enabled me to be unapologetic for what I needs I had. I was not pressured to resist time alone, attend social events, or shamed for desiring to eat the same foods everyday. Her degree in special education likely contributed to shaping her ability to accept me and adapt to my needs. She rarely asked me to conform to society or do things that I didn’t want to do. When I expressed my needs, she gave me space and time to process and feel. If I melted down, she validated that it made sense I was mad.

Overall, as a result of her accepting me for who I am, I have been able to get by pretty well throughout life. Even though my mom was respectful of my boundaries, others would challenge my ways of coping and did not respect my expressions of my needs. Instead of a teacher seeing my constant hand raising and question asking as an engaged student who had a need for intervention/support, she would ask me to stop raising my hand and allow other kids to share. Then, when I was bored or needed to process what I was learning, I improvised when told not to raise my hand and shared my thoughts with a friend. This was also not socially appropriate or respectful, which I now understand, and the teacher would tell me (and my parents) I was talking too much in class.

Countless teachers required me to participate in activities that were very uncomfortable for me on the regular, but due to my freedom to recover from these experiences at home or my agency to head to the nurse to get a break from my anxiety-related discomfort, I rarely had many meltdowns or shutdowns at school. My comfort to recognize my needs and ability to isolate at home made me comfortable to advocate for myself outside of my home. 

My ability to communicate or improvise to accommodate my needs often made others uncomfortable. There was a season of my life where I would simply inform kids I am not interested in talking to them anymore or clearly state why I think the person is being unkind. I would explain that I would prefer to be alone, which led to me isolating a lot. However, this didn’t bother me, and still doesn’t. I can’t think of a time when I was upset to be isolated or alone. Being isolated doesn’t feel like a punishment because it is when I feel safest. Kids would try to include me, but that isn’t usually what I wanted or needed. While I had friends, I mostly would relate with other kids as needed to get by and preferred observing others, pointing out what they needed to do to get what they wanted, or notice what they were doing well. Even though I didn’t really understand the value of reciprocal relationships, I was able to pick up enough to get by. 

As an adult, looking at the combination of my childhood experiences, finding articles, noticing online autism evaluation scores, and discussing it with a family therapist, I decided to pursue neuropsychological testing. I was anticipating that testing would be a way to learn more about autism and give me assurance that I wasn’t some kind of autism imposter. 

Photo Credit: Image by ElisaRiva from Pixabay

Neuropsychological Testing Results 

Hours of testing and interviews were followed by a meeting with the psychologist to discuss the results. As I logged onto the zoom call, I quickly noticed her unusual sudden lack of eye contact, the slight alteration of her tone. Her apparent discomfort allowed me to understand where this was going. She expressed her awareness that I would likely be disappointed to hear me that I didn’t meet the requirement for Autism Spectrum Disorder. According to the information she gathered during the evaluation, my autism wasn’t negatively affecting my life in the measurable ways it affected others that met the criteria for the disorder. She noticed a significant amount of autistic traits, but in her words “couldn’t in good conscience diagnose me with an Autism Disorder.” Apparently there was not a diagnostic tool she found trustworthy that assesses the way I experience autism. Because I had support and adaptations currently that allow me to function, there was no way for her to feel comfortable diagnosing me. 

I was confused when her treatment suggestions included autism specialized therapists and supports, but I was furious when the first autism specialized therapist I met with discharged me within minutes of my intake session because she couldn’t move forward with treatment for me in regards to autism if I wasn’t diagnosed. I circled back to find the psychologist continued to refuse to diagnose me with a disorder, even with the awareness that I could not follow her treatment recommendations without the diagnosis.

How the Lack of Diagnosis Affects my Life

Since I was not diagnosed, I have been able to support myself by implementing strategies and sharing articles with those in my life. I still needed significant support for my autistic traits, but I have accepted the psychologist was standing firm based on what she knew about me. From her vantage point, even though I had significant autistic traits, and reiterated that  because my needs were not reflected in the testing available, and according to her I was functioning “just fine”, there was nothing else she could do.

Technically, I am functioning without the diagnosis. Due to my husband’s income meeting our financial needs, I am lucky to live with a significant amount of needs without being a financial burden. Since I have not had to consistently earn an income, there is no need to have accommodations at work or otherwise. However, I still am autistic. Even though I don’t display my autism the way the tests measure, I would likely benefit from a diagnosis to get additional help.  

While autism generally has a bad rap, being autistic has it’s advantages. A lot of them. Let me enlighten you:

Protective Armor

At times, my autism is like a safe, protective armor. Being socially unaware for many years allowed me to be mostly unaffected by negative behavior or criticism of others. My lack of concern for what others thought of me in my teenage years helped me focus on learning, growing, adapting, and not experiencing rejection or discomfort in the moment. Instead, my negative feelings were processed hours or days later.

Shutdowns 

My ability to shutdown regularly helps me manage my overactive brain. As needed, I debrief for hours or days at a time. When I am in a time of debriefing, I deeply feel, express emotion, process my experiences, and shut of my relational interactions in a nonverbal, isolated cocoon. This shutdown may happen as I lay in bed hours after/before I sleep, as I am doing an activity in isolation such as crafts, coloring, or puzzles, or in a venting-type conversation with a trusted friend. 

Special Interests 

One of my (obsessive) special interests is human interactions and relationships. I learn about people and how they interact in books, shows, movies, by observing others, and gathering data from interactions. Human interaction is uncomfortable and not intuitive for me. Even today, I continue to take notes, ask questions, and use clarifying statements to ensure I am allowing people to feel comfortable around me.

Early in my life, I understood that many people don’t appreciate my unfiltered, direct tone, so I have learned to adapt my social interactions to reflect the feedback I have received. My early human interactions functioned as an attempt to understand human social behavior and the data I collected has shaped my understanding of how to interact with others by discovering the reasons people convey love, show compassion, and express empathy. The information I have gathered throughout my life allows me to cater my interactions based on the data I have received. Over time, I developed the ability to separate my actions, the actions of others, and my emotions. Note: until recently, I thought this was normal, widely experienced/understood human behavior. My ability to adapt how I interact with people has been extremely valuable as we raise our kids with severe mental health issues. In this unique area of my life my autistic brain feels like a secret weapon. I am able to choose when to have or avoid eye contact, change my emotional disposition, and adapt my body language to each of my child’s needs. Each of my children have a detailed parenting style that has been adapted in my brain from sentence structure to my body language as I interact with them. I now realize this was confusing to others.

While many were baffled by these ways I navigate the world, God was not. Based on my understanding of why God created me as autistic, I have found that there has been great intention in creating me for the specific impact He wants me to have in the lives of many people He loves. 

So, Why Am I telling you all of this? 

So why am I telling you all of this? Because sure, I am a little bit autistic. 

(Actually, according to recent tests that have been created to understand the nuances of autistic shutdowns, social issues, and symptoms that tend to affect women, I am A LOT autistic.)

Regardless of the diagnostic tools available, my autism doesn’t have to be recognized by a neuropsychologist, the general public, or anyone else in order for it to be the way I experience the world. I am now aware that I am far from typical, but this is no longer something I view as a weakness. The way I view the world is all I know.

I am not telling you so you will believe I am autistic, but because being aware that I am autistic has been healing for me. Acknowledging that there is nothing wrong with my autism symptoms has allowed me to love myself. What I really want is for autistic people and non-autistic people alike to notice their experience of the world is too complicated to be measured or fully explained. 

Hopefully your awareness of my struggle help you give yourself grace. Because I have learned to give myself permission to have atypical needs, I give myself grace.

• Instead of avoiding my shutdowns, I lean into them.

• Instead of shaming myself for eating my comfort foods/items, I notice these can help me stay regulated when eaten/used appropriately.

• Instead of wanting to avoid my needs or feelings to accommodate others, I have learned to enjoy the way God made my brain: busy, thoughtful, considerate, and genuine and use my giftings to encourage, illuminate, and value others.

Regardless of your diagnoses, lack of diagnoses, or “normal”-ness, I hope you feel freedom to embrace your needs and feelings. You matter. 

Maybe understanding autism as a diverse experience help you love someone better. Maybe you knew I was autistic all along. Perhaps you thought autism was limited to nonverbal, socially unique individuals who have unrelatable special interests. There are many autistic humans who have traits many find undesirable who have impacted our world for the better—even when they were socially misunderstood. 

Each one of us have unique, incredible characteristics that reflect God’s creativity and complexity. May those who don’t relate choose to care to either understand or simply choose to respect our differences. By sharing my experience, may you notice there is no cookie-cutter way to experience the world. People may be struggling differently than you think, but everyone deserves to feel seen, loved, and valued. 

A Prayer for my Autistic Friends 

May you be unashamed of the beautiful way your brain works. May you find joy in your special interests and find people who will allow you to talk about them for hours on end. May you see your feelings are important enough to consider and express. May you understand the value of coping skills and comfort items which help you feel safe when you need courage or security. May others see your thoughtful intentions clearly despite your direct tone or their reaction to your confidence. May you advocate for yourself and see the incredible value in not hiding or masking your autistic self. Your autism symptoms and needs not be silenced, but nurtured and supported. Notice your preciousness and display your transparency, authenticity, and courage with humility and grace for those who don’t understand your experience. 

My prayer is that you are supported by many people who love you and allow you to meltdown or shutdown in whatever safe way, whenever you need. May you discover supportive friends/partners who don’t want you to stop being autistic, but instead notice the great value your autistic brain has impacted their life for the better. May you have assurance that you were created with intention, yes–even your autistic traits—and are treasured by the One who created you.