Neurodistinct™

The Revolving Door - Our experiences with practitioners ignorance and inaccessible health services

A wonderful guest post by Tas Kronby. Check out their Bio at the end of the post.

Trigger Warning: fictional description of a medical appointment, mention of hospitalization, mistreatment by mental professionals, mention of mental health diagnosis terms ie. anxiety, suicidal ideations, depression. Discussion of autism and the lack of awareness in the medical field.

Imagine for a moment you walk into a doctors office seeking medical attention for pain in your shoulder. You stand in line, check in, and the nurse takes you back to the exam room. You sit down on the cold examination table and they begin to ask questions. Health questions, maybe some small talk here and there. Finally, it happens. The moment of dread hits you when they ask, "What is your diagnosis?"

Why is this so terrifying? Often,  the lack of awareness from physicians and other healthcare professionals leads to problematic treatments, lack of treatments, or even being invalidated because you have a developmental or mental health status. 

It is important to shed light on this issue, especially as it relates to the treatments available for you as a person on the autism spectrum, over the age of 18, and on Medicaid or Medicare. To shed some light on this topic, we will share our personal journey through the healthcare system and the struggles we have faced. 

At the age of 21, we finally  reached out for help. We were struggling with PTSD symptoms, anxiety, depression, and suicidal ideations. Our first visit to the doctor went like this: stand in line, complete the paperwork, get your vitals taken, and then wait. It took three hours for us to see the emergency psychiatrist.Then once the doctor came in, he asked the general questions. At the end of the appointment, which lasted 30mins, we were given a prescription for 2 antidepressants. Within 3 months, we were back in the office again. The same cycle repeated except for one detail: he added 3 more medications to the already not working concoction.  

At this point you may ask, “Why didn’t you speak up? Why didn’t you say no to the new medications?” 

One Simple reason: If you don’t have private health insurance, you get the doctor you get. They are the only option. 

Fast forward to the age of 23, at this point we were living in an assisted living facility and were on a whopping 7 medications per day, with some of them 3 times per day. Our psychiatrist and therapist changed over 20 times in that 2 year period. Everytime we saw a new psychiatrist, our medications were altered. They were each baffled as to why the treatments weren't working. 

At the age of 24, we received our Autism Spectrum Disorder diagnosis. At this moment everything fell into place. We could now see that the medications weren't working because the symptoms weren't from our mental health challenges, but part of being an Autistic person.

Anxiety is a major part of being on the spectrum.As a child, we were diagnosed with Sensory Processing Disorder which has since triggered panic attacks.

All our problems were solved, right? We could get the right treatment! Sadly, no. This caused more barriers  within our healthcare. There are many reasons for this, but mainly the state-paid mental health practitioners either treat autism as a mental illness or have no idea how to provide therapy to a person on spectrum. 

By the age of 27, we had gone through 55 therapists, not by choice but because of the high turnover rate of the mental health facility. Our psychiatrist had changed an upwards of 8 times during our many years of treatment.  This resulted in no continuity of care, taking 10 medications 3x per day, and never receiving counseling from the same person. The longest therapist we saw lasted 2 - 3 months and then it changed again. 

Our health was at the mercy of healthcare agents that did not understand how comorbidity of diagnosis impacts a person with Autism and mental health diagnoses. With state insurance you have limited options for therapists unless you can afford to pay another provider out of pocket. There are so many  people in the disability community that are low income and just simply can’t afford it. So you miss out on quality carequality care because you can’t pay for access.

At the time of my treatments, there was one hub for mental health services. This hub was the revolving door that harmed our mental health and wellbeing by incorrect and ineffective treatments. 

You cannot just treat one aspect of a person; autism makes your brain different. Therefore, it must be considered when providing mental health services. 

In the present day, our care has improved because we learned to self- advocate. You have a say in your healthcare decision. We are no longer on mental health medications and instead are using occupational and physical therapy for our conditions related to our autism. Also, we were lucky to find a therapist that is knowledgeable in our diagnosis. Now we are private pay and receive quality care. Once we had the ability to pay for our own sessions, our care increased by 80%. Even with our primary care physician, we take charge. We ask why, say no, and we even recently “fired” our doctor. 

Yes, you can actually do that! Whether you are private pay or on government insurance, you have the right to pick your healthcare provider. The options may be limited, but you still have the choice. 

We are hopeful for the day that healthcare will provide EQUAL access, EQUALLY knowledgeable practitioners, and EQUAL quality of care for people on the spectrum. 

Some day, the revolving door method will be replaced with a stable open door to anyone that needs and wants access to quality care.

Bio: 

Tas Kronby 

We are members of the disability community with developmental, mental health, and physical disabilities. We are diagnosed with Autism Spectrum Disorder, Complex Post-Traumatic Stress Disorder, Dissociative Identity Disorder, Borderline Personality Disorder, Panic Disorder, and Obsessive-Compulsive Disorder. We aim to use our voice to spread awareness and break the stigma surrounding any and all invisible disability diagnosis. 

We use they/them and plural pronouns, we/ours in our writing. Really, those are not typos. 

For more information on us come visit us at https://www.tasthoughts.com/