Tuesday, December 11, 2018

Possible Mental Health Editorial

First draft of something I wrote up tonight to channel energy in more positive way, possibly to submit to newspaper.

Neurodiverse population of Maine deserves better mental health care

I read with interest recently a June 2017 article I found in The Boston Globe, entitled "Neurodiversity: When you're not flawed, just mentally different." What does neurodiversity mean, you ask? It most often refers to people on the autism spectrum, who have a wide variety of skills, needs and particular sensitivities that need to be managed so they can participate in the world around them.

This was the first time I had ever seen the word "neurodiverse" anywhere outside the autism community, and I was floored by the level of support and acceptance this article showed. I am a 34 year old woman who lives in Portland, and was only diagnosed as an adult with Asperger's Syndrome / high functioning autism. While my intelligence level is quite high and I always did well academically, I struggle to make meaningful or lasting connections with others, and struggly mightily to overcome my many sensory issues. My anxiety, intense emotions, and frequent sensory overwhelm prevent me from working, but they don't prevent me from having something useful and meaningful to offer the world around me -- if only I was given the support to do so.

After nearly completing a psychology degree in 2006, I had to leave college six weeks before graduating. The inner turmoil of knowing I was different from others but not knowing why had taken its toll on me, and my sensitivities skyrocketed. It wasn't until my junior year of college I discovered, and was diagnosed with, Asperger's, a condition a half dozen therapists and several psychiatrists had failed to identify throughout my teenage and young adult years.

It didn't get any better in adulthood. Upon returning home from college, I was put on numerous anti-depressant and anti-anxiety drugs, but not given access to therapy to proccess the extremely strong emotions and trauma that had caused me to need to leave college in the first place. The medications were, and continue to be, no match for someone with so much unresolved trauma and no outlet to process it in. Competent therapy should be a given for everyone with psychological symptoms, but many struggle to access it.

Someone on the autism spectrum might be bothered by flourescent lighting or strong smells in an office; or they might not be able to tolerate using public transportation to get there, thus significantly limiting their options if they don't have an outside source of support and transportation (and many considered higher functioning don't). Even the rules of social communication with a therapist can be a challenge to navigate with neurodiverse individuals. Many messages that are considered "obvious," "implicit" or "implied" by therapists or people in general are completely missed by people on the spectrum. When they try to press for more clarification or get the therapist or individual to offer more information tailored to their needs, sometimes getting angry in the process, they are called "rude," and seen as behavior problems instead of someone who is just desperately trying to communicate -- and understand the communication, or lack thereof, that they get back.

The mental health care system in Maine is broken. This applies for everyone in the state, not just for people like myself, of course. But I can only speak from my own experiences. This includes several years of therapists who would not actively engage with me when I spoke my experiences. Many people seem to think I come across so intelligently that I couldn't possibly need their help, when I desperately do. These same people are befuddled when I melt down and start screaming, because they don't listen to me when I tell them what I need. I have caseworkers who tell me they can't possibly help me find a therapist because no one takes my insurance (it's Medicare, and this is not true), or that no one has any openings (while the pickings are scant, I refuse to believe that there is no one available if one looked for long enough.) Then there are the psychiatrists who only dispense medication and don't try to match me with one of many residents at the hospital where I'm a patient for therapy, even after two years of asking.

I've had people on the state crisis line tell me "You don't really want to talk about that, do you? It'll just make you upset," when I was desperately trying to reach out to someone to find a way to manage and talk through my emotions. I found that the national suicide line, so highly advertised in the wake of the recent celebrity suicides, redirects you (in Portland, at least) to the same crisis line no matter how many times you try to get a different, more objective and useful call line. I hate to think of people in worse shape than I was hearing someone tell them that. I've had the same experience with the state warm line, in different ways, more times than I care to count.

The state of Maine doesn't think I'm autistic enough to receive support services for autism under Medicaid. I'm not intellectually disabled, nor do I have a brain injury or a substance use disorder, so I fall through the cracks and don't qualify anywhere, except for two hours a month of case management that is unable to help me actually do anything. My sensory overwhelm symptoms have made it impossible for me to tolerate most indoor environments, including the one where I was supposed to receive eight hours of testing for a yet even more "official" diagnosis of autism to get services. The diagnosis from my psychiatrist and three previous therapists is apparently not enough for them. The fact that I tried mightily to sit for this evaluation but my sensory overwhelm and anxiety - symptoms that are part of the DSM definition of autism - prevented me from completing is ironic but not taken into consideration. I have unfortunately seen people far higher functioning than I am receive services because they had the resources to jump through the hoops and complete the evaluations in the "right" way.

I have not been able to tolerate going into most buildings for twelve years now; every year, every month, every week, I lose a little more of myself. I love meeting new people and trying to help others with my limited resources, whether it is giving out hand-decorated candy dreidels to vendors at First Friday or providing a listening ear to a homeless individual on a bench who, like me, just needs to talk. I was going to school to become a therapist before life decided it had other plans for me; now I just need someone who can be creative enough to find or be a therapist for me. I'm 34, and it feels like the end of my life. But it doesn't have to be that way.

Paul LePage cut tens of thousands of people from receiving mental health services during his two terms as governor. I only hope that his successor, Janet Mills, will not only restore these much needed mental health services, but make them accessible to neurodiverse individuals like me, who might need a little more help than others in securing them. We have much to offer the world and should not be ignored.

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