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  • Writer's pictureKirstie Bender Segarra

I am Living in a Neurodivergent World

One of the gifts of the pandemic has been giving me a mirroring where my edges are in sensory processing as an adult. I learned through having to wear a mask for long hours of teaching that it inhibited my ability to read and process what people were meaning. I had been aware that I mirror through moving my lips in a form of lip reading my whole life. I finally googled it and learned it has a name “echolalia”. Echolalia can be categorized as either immediate (occurring immediately after the stimulus) or delayed (sometime after the occurrence of a stimulus). Immediate echolalia results from quick recall of information from the short-term memory and "superficial linguistic processing".[1] My echolalia is immediate and helps me process what someone is saying.

I had read somewhere that it is also a way of mirroring what someone says to you. This made sense for my case as I am often deeply listening to my clients and trying to process through all the senses what they are experiencing, in bodywork we call this "tracking". What is interesting is we often limit our understanding to the main senses but in sensory processing disorders (SPD) the include all seven:

  • Sight (Vision)

  • Hearing (Auditory)

  • Smell (Olfactory)

  • Taste (Gustatory)

  • Touch (Tactile)

  • Vestibular (Movement): the movement and balance sense, which gives us information about where our head and body are in space. Helps us stay upright when we sit, stand, and walk.

  • Proprioception (Body Position): the body awareness sense, which tells us where our body parts are relative to each other. It also gives us information about how much force to use, allowing us to do something like crack an egg while not crushing the egg in our hands.[2]

The SPD can be hyper or hypo in sensitivity. For example, I am hypersensitive to sounds. Every little noise feels like it is right next to me elevated in my hearing. It takes a lot of energy to sort out what is a priority and honestly I am not very successful at it. Thus my preference for quiet and calming spaces. Another example is I live off-the-grid so I don’t have the constant B flat hum of the electrical grid. When I enter the grid spaces they seem very loud. The constant hum is distracting to my processing.

There seems to be something wrapped up in my own brain with the echolalia and sensory processing that wearing a mask impacts my ability to read others and social relationships.

The next thing that happened is I experience clear melt-downs and my brain shut down after a long day of teaching. This was especially bad when students wanted to meet outside and I had to mitigate the input of cars driving by—I essentially could not do it. I discovered that people with autism spectrum disorder have melt-downs of a similar nature. It made me curious about my own brain and how I process senses. I took some online autism tests and scored on the spectrum. My research lead me to want to go through the formal evaluation process so I could find out what was really going on. I should say that there is a lot of Youtubers and bloggers who advocate on neurodiversity. Many of them say it is okay to self-identify as autistic. In my own self discovery process I found that there is so much overlapping information that a formal diagnosis made sense as I did not want to take away from the impact this has on any individual who truly has autism or other sensory process disorders. Additionally, my partner is a therapist and we pulled out the criterion out of the DSM-5 for autistic spectrum disorder (ASD). ASD now has Aspergers syndrome within it due to the history of the Aspergers name from a doctor in Nazi Germany. The DSM-5 had more emphasis around adaptability and ability to function in daily life. Which found me exploring the term highly functioning ASD. There seems to be a lot of debate around the term “highly functioning” as well. Basically, whether saying to someone “well you are high functioning so that is different”. The question is it different? If someone is a person with ASD or SPD they may need adaptations to interact successfully in the neurotypical world. A neurotypical is “not displaying or characterized by autistic or other neurologically atypical patterns of thought or behavior”.[3] Just because a person with ASD does not meet the DSM-5 criterion does not mean they didn’t experience it growing up and it does impact them.

Allowing space for adaptation and not making assumptions about what another needs and/or experience is a good first step in advocacy. I have a lot of personal experience around having a congenital fusion in my left subtalar joint, which is not seen from the outside, but does impact my ability to stand, balance and walk. I found that if people see someone who appears able bodied they are not aware that someone may need an adaptation such as a seat to sit in to rest or more time to get from point A to B.

After some digging and research, I found a group in Albuquerque who specialized in assessments and was willing to do the assessment on female adults—this can be challenging to find as adults are more challenging to diagnose. I was scheduled for 6 months out and had to have a referral from my primary physician.

Through my own research I learned that there is an overlap with trauma history and neurodivergent people. See the following chart:

I also began looking into what may cause of neurodevelopmental conditions and found the following list:

  • Genetics

  • Trauma at birth

  • Infectious disease

  • Immune disorders

  • Nutritional factors

  • Physical trauma[4]

Birth trauma resonated with me since I was born one month premature and was placed in an isolette for two weeks. I have also taken a strong interest to perinatal psychology and incorporated the work in my practice through craniosacral therapy. One of the gifts has been to reframe my childhood experiences as someone who is neurodivergent. This helped me understand where I struggled with friendship building and my need for a lot of alone time to process my experiences—I am not just an introvert. A little warning here. In a reframing process grief and other emotions show up as you realized the level you have been misunderstood and/or mistreated as child even within a family system due to being a person with ASD or SPD.

I should say as a kid of the 70’s there wasn’t support or assessments. There was general lack of awareness that females can fall in the spectrum. It is only the last ten years that interest in research in ASD has emerged for females—gratefully, by females with ASD.

My first appointment with the autism specialists was to assess speech and language. They ran me through a battery of visual and verbal tests. Some of them were visual photos and I had to order them contextually to tell a story. Others were images of people doing things and I had to say what I thought was happening. I have to say I was personally surprised by my lack of empathy in the photographs and story that was presented.

Two weeks later I went for two more assessments. The first assessment was a lot of visual and pattern processing with some number processing. I had to do everything from memory and wasn’t allowed to use a piece of paper. I found that challenging. My brain would freeze during different test and I simply had to say “I can’t do that”. I wanted to be able to turn things around to process their relationships and I wasn’t allowed to do that either. It demonstrated how I have adapted using paper and moving things around in my hands to gain a visual understanding.

The next assessment was the ADOS interview. “The Autism Diagnostic Observation Schedule is an instrument for diagnosing and assessing autism. The protocol consists of a series of structured and semi-structured tasks that involve social interaction between the examiner and the person under assessment.”[5] The ADOS assessment was the most validating test. The therapist was really kind and heard my descriptions of how I process and how auditory stimulations and noises are overwhelming to me. There was one test with a story book with frogs flying on Lilli pads, the intention was to observe how I process and I found myself amused how I wasn’t interested in the people in the pictures. I paid more attention to the background.

A week later I had collateral evaluation by a psychologist that was fairly thorough to assess trauma, medical and adaptive behaviors. This one hit home for many reasons but between the birth trauma and growing up with substance abuse and domestic violence household I could see how my experience with PTSD could cloak any sensory processing disorders or neurodivergence.

The team that ran my assessments will now meet and in early January I will receive my evaluation. I look forward to sharing what I learn and hope this step in re-parenting myself will show me what kinds of adaptations I need moving forward. To be complete there are many potential disorders that fall under neurodivergent. I also relate to dyslexia and synaethsesia from my own experience.

“Examples of conditions/labels that come under neurodivergent are:

  • Autism, Asperger’s, Autism Spectrum Disorder, Pathological Demand Avoidance or Sensory Processing Disorder

  • Attention Deficit Hyperactivity Disorder (ADHD) or Attention Deficit Disorder (ADD)

  • Tourette’s Syndrome

  • Dyslexia

  • Dyspraxia

  • Dyscalculia

  • Dysgraphia

  • Meares-Irlen Syndrome

  • Hyperlexia

  • Synaesthesia

Some other conditions such as schizophrenia, OCD, anti-social personality disorder, borderline personality disorder, dissociative disorder, and bipolar disorder can be classed as a form of neurodivergence too.” [6]

My hope is sharing my story will help others on a similar journey of re-parenting and self-discovery.

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