# Struggles with Eating Disorder Treatment Access for Autistic Individuals
Written on
Chapter 1: The Quest for Treatment
Navigating the healthcare landscape can be particularly challenging for autistic individuals seeking treatment for eating disorders. Unfortunately, I find myself in a situation where I cannot locate a treatment facility that accepts my Medicare Advantage Plan. Even if I do find one, there’s a high likelihood that they won’t cater to my specific needs as an autistic person.
Section 1.1: A Personal Struggle
This isn’t a topic I wish to delve into, not just because it hits too close to home, but also due to the anger and exhaustion I feel toward writing about such issues. I long for moments of lightness and joy, yet the current state of my life feels heavy.
About two and a half months ago, I experienced a relapse with bulimia, and in some respects, it feels worse than it ever has. This turmoil is not surprising, given the upheaval in my life due to anti-autistic hiring practices, my husband’s job loss, and the recent passing of both my parents within a year. These are not situations that bring joy.
I'm not going into graphic details, as I plan to save those for a future memoir. Right now, it feels too raw to share. My focus is not on the disorder itself, but rather on the dire lack of adequate treatment options available to me. Being on Medicare, due to my permanent disabilities, is often viewed negatively within medical and behavioral health settings.
Section 1.2: Barriers to Access
Having only a Medicare Advantage Plan limits my access to eating disorder treatment centers. I’ve already reached out to several facilities, but many have turned me away, stating they do not work with Medicare. My hopes are dwindling, as I await responses from a couple of places.
The alternatives seem bleak. I may have to continue with sporadic sessions with a therapist, dietitian, and psychiatrist, or I may be forced back into the psychiatric hospital that initially helped stabilize me eight years ago when I was malnourished and underweight. However, such facilities are not conducive to recovery; they prioritize stabilization over actual recovery.
The environment is often oppressive and unwelcoming. Patients are discouraged from discussing their struggles, which seems absurd to me. I’ve heard disturbing accounts of autistic individuals experiencing meltdowns and being treated punitively. The medical community frequently misconstrues autism as a pathology rather than recognizing it as a difference.
Chapter 2: The Need for Specialized Care
After my previous experiences in psychiatric hospitals, I have sought out non-medical treatment centers that were more supportive of recovery. Unfortunately, those options are no longer available locally, and I doubt they would have accepted my insurance even if they were.
For those who can afford it, specialized eating disorder facilities tend to be more accommodating and supportive of neurodivergent individuals. However, my current financial situation and disability status prevent me from accessing these options.
There is a facility nearby that I once attended, but their services are prohibitively expensive, even with my husband's former salary and good insurance. Now that my husband is unemployed, I am limited to utilizing my Medicare insurance, and if I’m fortunate enough to find a facility that accepts it, I may be stuck with a psychiatric hospital notorious for its unwelcoming environment and unsympathetic staff.
Some may argue that being on SSDI is a privilege, as it provides me with some form of support. Yet, this mindset is deeply flawed and harmful, especially for disabled individuals in need of mental health services.
Section 2.1: The Emotional Toll
If a facility previously exacerbated my eating disorder, how can I expect to achieve recovery by returning there? The challenges faced by autistic individuals in overcoming eating disorders are compounded by both childhood trauma and ongoing social struggles.
In a world that often alienates and rejects us, it’s understandable to seek comfort in food, particularly when sugary and creamy options provide a brief reprieve from despair. The daily barrage of anti-autistic sentiments in society further fuels this desire to seek solace through eating.
When considering the emotional aspects of my bulimia, it becomes clear that my eating disorder is intertwined with autistic-specific issues. I often seek out creamy textures and crunchiness for the proprioceptive feedback I lack, which complicates my relationship with food. Additionally, my struggles with interoception hinder my ability to recognize hunger and fullness cues.
Section 2.2: The Need for Tailored Treatment
Unfortunately, treatment options are rarely accommodating for autistic individuals. The environments are often overstimulating, and the therapeutic strategies employed are typically designed for neurotypical patients. Issues unique to autistic individuals, such as body dysmorphia stemming from being undiagnosed for years, are seldom addressed.
How can I expect effective treatment when the staff frequently express judgment rather than compassion? I have encountered numerous instances of insensitivity from therapists and dietitians, which has only deepened my struggle with recovery.
While I wish I could feel hopeful, I currently feel overwhelmed and defeated. Beneath this sadness lies a profound sense of hurt and anger. I deserve appropriate treatment for my eating disorder, just like anyone else, and should not be relegated to an option that perpetuates a cycle of relapse.
Perhaps I need to take matters into my own hands and develop my own treatment plan, as the specialized care I require simply does not exist at this time. However, even if such a plan were available, I would likely still be unable to afford it.