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.

Wednesday, November 21, 2018

Thanksgiving Reflections

I spent several hours in the library today, as I often do. But this time, more than most, the plight of the homeless or less advantaged was on my mind, due to the abhorrent January weather we are supposed to get tomorrow. High of 18 here, and with windchill and 35mph winds, -5. Worse in northern Maine and even a few degrees less an hour west of here, where a friend of mine is living in an apartment that doesn't have heat. He moved into this place in September and I guess no one checked to see if the heat was working. He said it's been a month since they figured it out, and the landlord keeps saying they need a new part and "It should come in this week" but never does. I am so concerned for him, being in an apartment that is per his estimation around 45 degrees, WITH outdoor temps above freezing, which tomorrow will not be.

But after several phone calls, there is nothing I can do.
At the library, I saw a woman I know who I often see there. She has a radiant, beautiful personality and is intellectually disabled and lives in a group home. I saw her go up to the librarian and say "I have nowhere to sleep tonight. Do you know where I can sleep?" Shocked, I went up to her and tried to figure out what was going on. She said, "The staff at my house have the night off, and no one's allowed to be there alone. Everyone else has family to go to, and I'm the only who doesn't. I don't want to sleep in the street and I won't go to the homeless shelter. Do you think the hospital would let me stay there?"

I tried to gently persuade her that it must have been a miscommunication, and they must either have relief staff or are permitting her to stay by herself, but she just kept saying it was house rules and they deserved a day off. I tried to offer to call some local people who I thought might be okay with an overnight guest, but when the security guard came up and gave her a bookmark with resources such as homeless shelters that I knew wouldn't help, with only 15 minutes until the library closed, she decided to go with him instead of accept my help. So there was nothing I could do. The librarian, one I haven't seen much, seemed touched by efforts, and said "Thank you for caring," as we comismerated on how difficult the situation was.

While I was reading the newspaper, a guy I'd met on Monday over a random and passionate discussion of Alaska came up to me to say hi. He was warm in personality and enthusiastic. He wanted to update me on when a rally for the homeless he's organizing will be next week, and ask for my permission to call me to let me know. I said sure. He then told me about all the snow he had to shovel off his tent, where he's living because he is also homeless, last night. When I offered sympathy, he said "That's all right! It just makes the warm sleeping bag feel that much better when you get inside." That is a guy with a good attitude. I started to wish him a good Thanksgiving, realized my mistake, and told him "I know you're going to be cold tomorrow, but I hope you find a way to stay warm."

It changed my perspective on how we evaluate success in this holiday.
I have so many things I could be worrying about tonight, but somehow, after these three encounters, I was able to put it in perspective and say Screw it, that all might be true, but I have more than these people have and I need to be appreciative.
It's really hard to be appreciative unless you've had actual lived experience with an opposite experience or personally know someone who has.

So today, I tried to help others, and they helped me, without even trying to.
My Thanksgiving wish is that I find more opportunities to engage in meaningful interactions like these, that help me put my life in perspective.

Monday, November 12, 2018

Mendocino County Line (Family Visit)

I made them laugh.
Because laughter is a tonic.
So are good views, a beautiful sunset, and a passionate appreciation of the nature around you.
Positive energy is a tonic, and I got that in spades tonight, with my uncle, visiting from California, and his new friend C. She is such a lovely combination of both introspective, warm and outgoing! Not a combination you find that often.
I hadn't seen my uncle in a couple years, and was unsure how it would go; but with his contagious, infectious enthusiasm and her immediate warmth, close attention to my jokes and stories, and interesting ancedotes, how could it not?
It was sunset, and even though the wind made me nervous, we headed towards the western prom for a spectacular sunset that we all enjoyed.
Then there was the matter of grave importance -- the graveyard, which naturally lead us to the long and winding way...road (couldn't resist, it's true) to the Pine St intersection.
My uncle loved the architecture of all the buildings on the West End; I've never had a more appreciative audience. I adore (outwardly) appreciative audiences. They are very hard to find. You know the houses are beautiful, but you don't quite appreciate it as much until you see it from someone else's eyes.

Walking in the nearly empty streets reminded C of Mendocino, where she is from, so I asked if she knew the song "Mendocino County Line," which she did! She said “I do, but how do you know it?” and I sang some of it.

Both of them walked on the curb with me near the playground, no one has ever done that before. Well ,she IS a yoga teacher! And he met her doing yoga, so...

And my uncle jumped in the leaves with me. We went to the US map briefly and then the chocolate shop. There was quite a line in there. I waited outside.
We got a treat eggs for Nate, a chocolate turkey for Thanksgiving, and another heart choclate for whoever I deem appropriate!
I also gave them my passionfruit chocolate because C said “I love passionfuit!” and my uncle did too. And the other heart chocolate.
My uncle bowed as a good bye gesture ,which I liked, and we said goodbye until next time.

A lovely way to spend an evening which I hope to remember.

Wednesday, July 11, 2018

Dancing in the Street

Tonight, I went to a Grateful Dead tribute band at the outdoor patio of a local establishment in my city. I have done this for three years now, as they perform every Wednesday evening in the summer. It was  a great feeling, but it was a little lonely with no one to share it with. Despite the abundance of tie-dye t-shirts and Grateful Dead logos around me, I got the feeling that no one particularly wanted to have conversation with a stranger, so I danced alone.

When the band  took a break, I put my headphones on so I could be amused by my music. It was then that I saw my downstairs neighbor walking towards me with some of his friends. He called out my name twice, and seemed happy to see me. He was going to the concert, too. We had a nice chat, and I was happy there was someone  I knew there. Group conversations are nearly impossible for me to figure out how to navigate, though, so I let them sit down and went back to my music, belting out the lines to an old favorite, "Me and Emily, "  while I tried to distract my brain long enough for the band to come back from their break. Bored afterwards, I made my way tentatively to their nearby table. There was a break in conversation, and my neighbor smiled at me, which I took as an invitation to come over. He introduced me to his companions,and we had a conversation about the apartment building we both lived in, and where we'd gone to school. We were the same age. Our schools,Cumberland  and Cape  Elizabeth respectively,had apparently been big rivals in sports and we had a laugh over that. It was nice, and he was welcoming. More of his friends made their way to  his table, though, and I had no idea what to do. How to integrate myself socially, or if I  even should,or what the protocol for this situation was. So I left to  go dance  and sing to the music some  more,glad for the brief connection.

It was long enough for me to remember, though, how incredibly awkward and impossible social interactions used to be. Throwing myself at people who didn't speak the same language as me. Thinking I should be able to relate to people  who were my age, just because they were, well, the same age. Thinking that if I just tried harder or found someone with similar interests, that a friendship would magically materialize. The despair  and intense questions  when it didn't. I was always too intense. The pace, the  tone, the flow of most "typical" conversations is markedly different than that of someone on the autism spectrum, no matter where on the functioning level they are. Someone on the spectrum, if they are social at all, is likely to hyper-focus on one topic for longer than a neuro-typical person. They are likely to want a conversation much further in  depth than the people around them, and to give in-depth analyses of the topic. Some are likely to show more emotion than expected, or not enough. They are usually not aware of what their body language is saying to others,or what others' signals are saying to them. They  tend to be more sensitive, to everything. It's not wrong. It's not a disability, per se. But what it *is* is an entirely different language, an entirely different way to communicate. And it's very hard to make it fit in  with the language that most people - especially young people -- use.

This year marks thirteen years since I found the label of and diagnosis of Asperger's Syndrome, otherwise known as autism spectrum disorder. It marks approximately 12 years since I found a support group of people on  the autism spectrum, and eleven years since I was lucky enough to develop close friendships with several of them, but two in particular. In those years, I have immersed myself in disability culture and community as much as possible, both online and offline. I have now literally spent a third of my life reading about and witnessing the experiences of people who came before me, and the words of those who are currently navigating this difficult life of overwhelming sensory experiences, confusing expectations and an increased rate of loneliness and isolation.
While I will probably always have a little bit of shame ingrained into me from spending so much of my life wondering why I was different, I am  struck tonight by the degree to which it has lessened in these twelve years.
I am happy to finally have something positive to report.

You see, if this had happened before my diagnosis, I would have burst into tears wondering why my interest in the Dead was so much more intense than others; why I wanted to talk about it and no one else did. I would have found being part of a group conversation impossible and wandered away, hurt and lonely. I would have been so jealous at the seemingly good times others were having that I wasn't that I would have cried for hours afterwards. And I certainly wouldn't have approached a stranger to try to start a conversation with them.

But tonight, I  made a few attempts at social integration and when they didn't work, or worked only to a limited  amount, I just smiled at the positive energy  of the crowd, enjoyed counting tie-dye t-shirts (four), and let myself get carried away by the music. I just  danced instead.  I danced around the crowd, having  the confidence that I didn't *need* to be part of it, at least not for this night, and that I could make my own fun when I needed  to.
This label gave me the confidence to  start living life the way that felt comfortable to me. Having friends in the disability community gave me something more positive and  similar to me  to  compare myself to ,and for once  I didn't come up as "there's something wrong with me and I don't know what" but instead  just "yeah, my friend does that too." It is the ability to be part of a group, and feel like you belong somewhere, so you have the ability to tolerate being in places  that are more  difficult for you for a short time.

I still get a feeling of longing in my heart when I see others communicating in the way I want to.      
But I've learned to find connection in older people, whose communication style  more closely  resembles my own, and in people who are neurodiverse in many ways -- anyone whose life is different enough to give them enough compassion to accomodate another person with a difference. I smile, tell jokes, and let myself just be. The positive energy I usually get back when I choose well is an incredible feeling, that I feel compelled to go after every day to fill me up. Without the diagnosis of an autism spectrum  diagnosis  and friends both online and offline to help show me the way and act as role models for me, I don't think I ever would  have had the confidence and self-acceptance to do so.

So tonight, instead of berating myself for being different, I just danced in the street, to paraphrase a 1963  Martha and the Vandellas  song. And I took a moment to congratulate myself for how far I have come.                                                        

Tuesday, June 12, 2018

Random Bench Guy June 2018

Random  Bench Guy for the Win, Downtown Portland on a Tuesday afternoon, 6/12/18 5pm

When I got downtown around  5pm today, there were people playing music and handing out voting guides in Monument Square.  I put my stuff on a bench nearby, intending to talk to them. But as I waved a quick acknowledgement of the non-descript middle  aged guy sitting on the bench, it started a conversation. It started out as a quick comment about the music,and then morphed into a conversation about voting and then our personal lives, which is my favorite kind of conversation.

I told him I hadn't tried that hard to figure out where to vote since  I knew I'd have trouble going in any building.  This was interesting to him and spurred more conversation. But first we talked about geography - he's from North Carolina  and Florida but lived in Maine most of his adult life - pain issues, adjusting to life issues,even chemical sensitivity which he said he shared. He related how much he hated the air fresheners on rental cars! I could certainly relate to that. We talked 60s music and  Marvin Gaye jokes and Jewish and family history, all sorts of things. ( I asked him if he  asked "What's going on?" when  Marvin Gaye died. He  told me I was a funny gal.)

I loved him. He was unfailingly honest, authentic, and emotionally expressive.  His voice expressed authenticity  and emotion. We just connected. For  an hour, we connected. I felt sad to not be able to make it last longer, and see him again, but he was exactly the kind of angel  I needed today to feel heard.

But mostly, he was perceptive in a way that so few people are. In fact,  I have rarely met someone so perceptive. It started when he asked me "Do you think it gets harder going into buildings the more time goes on?" when most people put on a smiley face and ask "Oh, but it gets easier the more you  do it,  right?" No.  For most situations -- No, it doesn't. I was floored ( no pun intended!) that he got this.
Then when we were talking about doing a comedy open mic, and I did my standard "pretend to be interested and act like you'll follow through because it's easier than explaining why it will never happen" routine, he  actually said "But that would involve going into a building, so you probably won't do it,  right?"And I said yes, yes, once again,you are very insightful and completely right.

So then we were talking about, I forget what, but I brought up my autism advocacy. He said "I thought it might be something like that," which I liked, and when I asked him what he had noticed in me to make him think that,he said "Your eye contact.  You look at me when I'm talking, but you look away when you're talking."

I had never noticed that before!! I was blown away. Both by his perception and his willingness and ability to share his honest thoughts!
I always tell people to sit in front of me so I can see them.
Most of the time, when the conversation is easy anyway, I LIKE looking into people's eyes.
I was almost worried I somehow didn't fit into  the ASD category because of it.
But I never noticed that  I often look  away when                                               talking to someone else. It makes it easier  to process what I'm saying, I guess.
So I guess  I'm aspie after all lol.

So this random guy on a bench could tell me what fifteen years of therapists, psychiatrists and other mental health workers couldn't.

When I say I get better feedback and support from random people  downtown than anyone in the mental health field,  I  really mean it.  This is by far the best  example yet, and most people don't  rise quite to this level, but the  authenticity and emotional availability is what I like about my random connections with people downtown.

I take off my hat to this lovely gentleman, and wish more people  were like him.

Just another day in Monument  Square! =)