We’re excited to introduce you to the always interesting and insightful Kara Nash, ASDCS, RN. Kara is the founder of The Autistic Autism Consultant and works with people on the autism spectrum, as well as educating others about what it’s like to live with autism. She’s presented at regional Autism conferences, schools, churches, law enforcement agencies, as well as to therapists and medical providers. We hope you’ll enjoy our conversation with Kara below.
Kara, so good to have you with us today. We’ve always been impressed with folks who have a very clear sense of purpose and so maybe we can jump right in and talk about how you found your purpose?
Being born in the mid 70s when little girls didn’t have autism, or so was the common misconception, I struggled to communicate my challenges with the world around me. I didn’t want to be perceived weird or different or to disappoint my family, so I tried to hide the things that I struggled with. Even with all of the effort I put in, I was still bullied pretty severely by kids at school, and the older I got and the more importance was placed on being able to socialize with my peers.
One of the key signs of autism is asymmetrical development, meaning kids on the spectrum may hit some milestones early and others late for their age, or never at all. Some examples from my own life are as follows.
From toddlerhood, I was fascinated by letters and how they fit together to form words, which then fit together to form sentences. I’d copy the words off the backs of shampoo bottles, record album jacket covers, magazines, and anything else that had the text chunked into smaller blocks. I started reading around age 4. I’d read everything in our small town library by 3rd or 4th grade and had taken to reading the encyclopedia and different dictionaries. With the dictionaries, I took great pleasure in highlighting the words that I’d seen in books, along with the words that borderlines on “dirty words” like “damn”. I was after all in elementary school and some experiences are universal to most children.
Although I was a happy child when left to my own devices and the world of books, I found fitting in in elementary school confusing and frustrating. There were things that the other kids could do that for some reason I couldn’t master that I tried to hide from my teachers and my parents. I often felt like basic directions were being given to me in a language that I didn’t speak.
Until 4th grade, I was unable to distinguish my left from my right. Because I excelled in other academic areas this seemed to annoy the adults in my life who would say things like “you’re smarter than that” and “if you wanted to learn you would.” Teachers tried to teach me with techniques like the “L” in in your left hand (meaning my thumb and pointing finger when extended made an “L”), but both of my hands had “L”s in them depending on how I held my hands.
Looking back, I’d guess my confusion was a mixture of being too literal and having difficulty understanding the concept of fronts and backs of hands. Since the back of something is usually the part you don’t see, that means as I sit here typing the back of my hand is the lighter colored side closest to the keyboard. At the same time, if I raise my hands off the keyboard and turn them palm up, then the back of my hand is the side that gets more exposure to the sun.
I had a lot of challenges with visual spacial words and their meanings. Often, especially when I was young, my confusion came off as sassiness or being uncooperative. I didn’t understand what I was doing wrong, I only knew that the adults weren’t happy with my responses. At rest, it’s been shown that the autistic brain processes up to 42% more information than the neurotypical brain. With the increase in the amount of information I was taking in, it often took me extra time to answer adults verbally or to understand certain concepts. This was often misinterpreted as my not paying attention.
I had other “secret shames” (aka delays) that I managed to hide. I didn’t learn to tie my shoes until 6th grade. I couldn’t figure out the order of operations to get the knot tied and that nonsense about the bunny and shoving his ears through the hole was indecipherable to me.
I could share dozens of other examples, but I think you get the idea. My brain simply worked differently than the kids around me. I didn’t understand that then. I understood that there were things that seemed easy to the other kids were hard for me.
Once I got diagnosed as autistic in my 30s, I saw how these sorts of delays had persisted throughout my adult life. I had never dated anyone for more than a few months. I’d never been able to tolerate living with someone. If I was able to stay in a job longer than two years, it was a rare accomplishment. I had a hard time sequencing how to make meals. Also, I was in overwhelm whenever I drove in even a slightly trafficked area. Restaurants were a nightmare of too much noise and food textures and tastes that made me avoid them completely.
Those differences in childhood were compounded by my differences in adulthood and had given me a sense of shame, anxiety, depression, and the feeling that I couldn’t take care of myself.
At the time of my diagnosis, I’d been a mental health nurse for many years. My special interest had always been how environment affected human behavior and mental illness. My special interest got more focused on how autism affects the brain and how those brain differences affect behaviors. I focused all of my time and energy into learning about that. My purpose was to learn to help others understand that their brain differences weren’t flaws, so that they could be spared some of the shame and isolation that I’d felt.
Thanks, so before we move on maybe you can share a bit more about yourself?
Professionally, I very much enjoy public speaking opportunities because I get the chance to share information with a large group of people. I had the honor of presenting at the South Eastern Regional Autism Conference back in 2019 and hope to do more conferences in the future. It’s wonderful to get to normalize and validate autism as a way of being in the world.
I often do autism education sessions with church groups, school staff, therapy practices, wellness centers, first responders, summer camp staff, and with parents of children and adult children on the spectrum.
I also have a thriving private practice where I work with folks 1:1 both in person and virtually. I’m pleased to say that I got approved to accept payment through NC’s ESA+ program, so I can work with kids who have autism and are homeschooled and their bills are covered by the state.
That said, I mostly work with adults with Level I autism and parents who have children who are newly diagnosed. It can be challenging for parents to understand how traditional developmental milestones like going to college, living independently, full time employment, maintaining friendships, and regular self care are more complex to navigate for someone with an autistic brain type.
According to a recent SPARK for Autism study, less than 14% of people on the spectrum are able to be employed full time. This is the kind of research that I share with parents, so that they can create realistic goals and plans with their adult children. This can be a hard process for parents, because so many aspects of autism haven’t been researched until recently and they’ve had the child’s whole life to logically assume that they will meet major milestones the same way their siblings or cousins have.
I host movies at my office for both adults and teens on the spectrum to attend so that they can practice being around strangers without having to talk to them. Many of my adult clients haven’t had a friend outside of their family since shortly after college graduation. Building back up these people skills, before their caretaker parents can no longer help them meet their social needs, is essential.
I host events regularly and just presented both virtually and in person a program called “What You Wish Your Doctor Knew About Autism” at AmeriHealth Caritas. With 20+ years of working in mental health as a nurse (in inpatient, residential, crisis, emergency, and case management settings), obtaining specialty certifications in autism, having accompanied countless clients to doctor’s appointments as an advocate and a lifetime of lived experience on the spectrum; helping autistic people get better physical and mental health care is at the heart of my work.
Looking back, what do you think were the three qualities, skills, or areas of knowledge that were most impactful in your journey? What advice do you have for folks who are early in their journey in terms of how they can best develop or improve on these?
Things that I think have been most impactful on my journey are access to therapy, being able to understand (to some degree) the neurobiology of my disorder, and learning that sometimes I can’t make people understand my intentions. It breaks my heart to be misunderstood in a way that is seen as lazy, unfriendly, not trying, or being argumentative (I ask a lot of questions), but sometimes, people just aren’t going to get it. When someone I love no longer wants to have contact with me, it’s painful, but there usually isn’t anything I can do to change their minds and seemingly the harder I try the more I alienate them.
As for folks who may be starting out on a journey to try and advocate for and help people on the spectrum, my advice would be to listen to autistic people. Seek out opportunities for autistic people to interact with other autistic people. It’s very nourishing and down regulating to be able to connect with someone without all the masking. Autism is a social and communication disorder. Those of us on the spectrum literally have brains that approach communication differently than neurotypicals and are constantly having to decode interactions with most people who are neurotypical. This can be exhausting.
Study “typical” or “average” child development. You can’t identify outliers without a solid understanding of “average” development. If you are speaking with someone on the spectrum, don’t ask open ended questions. Ask one question at a time. Let us communicate and express ourselves without having to adhere to social norms unless our way puts ourselves or others in danger.
Volunteer on Human Rights Committees for local group homes. Participate in fundraising events for autism. Read books by autistic authors (Temple Grandin). Take continuing education about autism. The research and best practices are changing at a rapid rate, so what was true two years ago may have been disproven 6 months ago. If you can find a mentor who will let you spend time with them, do so as much as possible.
If someone that you’re working with is in distress, ask about their special interests (always have a section for this information in your intake paperwork) and encourage the client that you are a safe person to stim around. Stimming releases beta-endorphins, which are known to produce dopamine. Dopamine is responsible for feelings of pleasure, satisfaction, and motivation. In other words, work with our brain chemistry, not against it.
Who is your ideal client or what sort of characteristics would make someone an ideal client for you?
My ideal client is open minded and engaged. They have the desire to understand themselves better and can come to understand that when you have autism there are some things that are unlikely to ever be “good” or “easy” by neurotypical standards, but we can work to find ways to make them “good enough” or “easy enough.”
We can’t change the differences in our brains, but we can change how we frame the world around us and how we react to situations that make us uncomfortable. The belief that we can feel better is essential, although often easily lost sight of.
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Peter Lorenz
This article was originally published by a boldjourney.com . Read the Original article here. .