“We Did The Thing!” – Self Doubt and Self Care

I wrote the title for this blog enthusiastically and with happy tears in my eyes because I have recently experienced something I want to share with the world. Then, I stared at the screen, started typing, hit the backspace key, typed something else, and stared some more. The truth is that I don’t know how to talk about this in an articulate way. I have expressed parts of the feeling to individuals as I have deemed it necessary, but, ultimately, the emotion is too huge to pin down in a few words.

I am, however, going to try. I think it is necessary for me to talk about it as a human. I think it is necessary for me to talk about it as a woman. I think it is necessary for me to talk about it as an individual with autism. I think it is necessary for me to talk about it as an individual with chronic pain. I will do my best, and I will ramble, but I will be as sincere as I damned well can be.

I don’t trust easily. I’ve never had close humans whom I’ve felt I could tell anything to or whom I felt I could call if I needed support. I’ve never felt comfortable asking for help. I have always stringently avoided inconveniencing people. I have kept up appearances as much as I possibly can. I have forever tried my best to deal with me… myself.

Over the past few years, I have learned the importance of self care, the benefits of therapy, and how to speak to myself more positively. I had not learned, though, how to rely on others for support (or trust others to support) until two weeks ago.

I like to consider myself a fully-formed emotional being who is self-aware and capable of doing grown-up things. Unfortunately, life, which is complicated and often ugly, can sometimes smack a person around and you don’t always behave as gracefully as you should. Sometimes you break the fuck down. Sometimes the world ends. Sometimes things are just bad. Sometimes you end up in a parking lot somewhere and you don’t want to exist. Sometimes you are in such personal crisis that everything seems dark and dreary and hopeless.

It was in such a moment that I learned that other people are more than just social outlets. Apparently, and this is still new so bear with me, other people who are not family or in romantic relationships with me are capable of caring about me enough to want to help me. Other people do things like show up in parking lots with water and chocolate and hugs. Other people offer to meet for ice cream just to talk without wanting anything in return. Other people check in to see how things are. Other people offer beds and coffee and make dinner and out-of-season Christmas happen. Other people share their ups and downs and feel happy when they hear about ups and sad when they hear about downs in return.

These other people are called “friends.”

It isn’t as if I haven’t had friends all my life, but I don’t think I’ve allowed myself to have this level of friendship with other people before. I had to reach one of the lowest points in my life to finally be able to look up and see all of the hands being reached down to lift me up. And there were so many hands, and they all glowed with unconditional love and compassion.

This is where typing becomes tricky, for the tears, they are a’flowing. It has been a long thirty-five years of striving to feel accepted and loved for who I am by ME, let alone other people. I am trying very hard to let the love that I feel for humanity extend to myself. I know that I am a lovable, likable person. What I have never really believed or understood was that other people see me this way, and I am overwhelmed by how truly cared for and supported an uplifted I feel. I genuinely hope that other human beings have felt this feeling at some point in their lives. I want this feeling for everyone.

I am spending this week engaging in radical self care to eliminate some of the disquiet of self doubt that eats away at me moment by moment. I know that to move forward in a positive way with my life, my relationship with my self, and my relationship with others… I have to regain some of the self esteem that has been lost to years of pain.

I will leave you with this. One of my lovely friends, with whom I discuss aforementioned ups and downs and with whom I celebrate and commiserate, and I have a saying. It is silly and motivational and it puts our intention into the world:

“We did the thing!”

It means that what ever it is that we want or need to do is already done and we were successful. We aren’t going to do it. It is done. We aren’t doing it presently. It is done. We did the thing. The thing is accomplished. Wipe of the hands. Be it difficult and stressful or fun, we did it.

Whatever you have to do, it is already done. You did the thing. But you aren’t alone…

We did the thing.

Adults with ASD and Death: Mourning and Mornings Aren’t Easy

MBHM with mother, Beth, in 2003

My Brain Hates Me with her mother, Beth, in 2003

Growing up on the spectrum but being undiagnosed was difficult enough. I’ve experienced a lot of deaths along the way in the up-close, gut-wrenching way that some people do. Death is a part of life, but I’ve never known how to grieve. Whether this is an ASD characteristic, a failing on my parent’s part (which is doubtful because society is really uncomfortable with death as a natural process), or merely something that we as humans have lost the ability to do is unknown.

A friend of mine lost her mother in a way that is heartbreakingly similar to the way that I lost my own. The difference is that my mother claims to have been ready and her mother still had some fight in her. Sometimes fight isn’t enough to tip the scales and God, or science, or what or whomever, does what they are going to do. It’s tragic and I am incredibly sorry for her family.

Of course, those feelings about my mother in her final months are flooding in, and the feeling of fresh grief is flooding in, and it’s taking a long time for me to process all of it. I feel a bit frozen by it. Overwhelmed.

Autism in Adults is Still Talked About More By Adults with Autism than by Professionals

This morning, I took to the internet (as I do) to find some articles on adults with ASD and how they grieve. It came as no surprise that most of the information was written about how to handle children with ASD who are dealing with a death in the family and that the rest of the information were scattered personal accounts. Even Psychology Today has a personal account, albeit from one of the most respected autistic people in the nation, Lynne Soraya.

The trend that I see among personal accounts, and that I have felt during situations in which I have had to handle my own grief, is fear of doing it wrong. As an adult with autism, I understand that there are rules and social graces and expectations, but I don’t always know what they are or why they are, so I’m not always certain when it’s okay to break them. My husband is good at telling me when I don’t need to worry about other people and when I do. My mother’s funeral was a good example of when he told me I shouldn’t have to worry about other people.

Adults with Autism Feel Like They Are Doing It Wrong

His mother’s funeral was an example of when I did have to worry about other people and how I acted. My grandparents’ funerals were the same. I had to be on my best behaviour because those deaths weren’t about me. They were about other people losing friends and parents. But it’s very confusing.

I know how funerals are supposed to happen in my family. You have a wake, you have food, you dress up and Southern women tell inappropriate jokes while sipping sherry and eating little ham biscuits, then you have the funeral. Occasionally, I sing something. You don’t cry unless you are also telling a funny story about the deceased. There are always funny stories about the deceased. Always.

Growing up, I never saw adults cry at the funerals I attended. I saw people be quiet. I saw them look sad. Maybe I just didn’t look hard enough because I was so distracted by everything else that was going on. There were pretty dresses and suits. Lovely grass. I got to dress up.

I don’t remember if my mother cried at the funeral for my twin brothers.

So when my mother died and I cried at her grave side and I couldn’t stop crying… I felt like I was doing something wrong. When people came over to my house after for wine and little sandwiches, it had to be perfect because that’s what you do. You give people wine and little sandwiches. I was so worried about doing it right so that everyone thought that I was good at funerals and grieving properly.

That’s all that I thought grief was.

When everyone left the house, I thought that I would feel better. I thought that I wouldn’t feel sad anymore.

But I, and all of my grief, were still there the next morning when I woke up. I had no model for that. Because I grew up in a family that suppressed emotions and went on about their business, I didn’t see people being sad. I didn’t connect my mother’s drinking with sadness. I didn’t understand any of it at all.

Without those models, I had nothing TO model. I had thrown the perfect funeral… and then I didn’t know how to grieve for my own mother.

Society’s Tendency to Sugar Coat Death is a Detriment for Adults & Children with ASD

In December of 2013, about 4 months after my mother’s death, I wrote something about not understanding what was happening to me. I didn’t understand why I would suddenly cry over nothing or just stand in my kitchen for half an hour. I turned to “Buffy the Vampire Slayer” for that. I wrote a blog called, “Buffy Terms” because that’s how I started to explain grief to myself.

Weirdly enough, on this, the day after my friend’s mother’s death, I am having a “Buffy” marathon at my house with two other friends. We plan to watch “The Body,” which is the episode in which Buffy’s mother dies. Buffy’s mom dies. My mom died. My friend’s mom died. People just die.

Whether you have ASD or not. I don’t think any of us really know how to handle that well. But I think that there needs to be more literature out there for people who are adults on the spectrum, because we don’t know what to do and we feel like we’re getting grief wrong.

There is no way to get grief wrong.

What is Neurodiversity? | Psychology Today

“To many neurodiversity proponents, talk of “cure” feels like an attack on their very being.  They detest those words for the same reason other groups detest talk of “curing gayness” or “passing for white,” and they perceive the accommodation of neurological differences as a similarly charged civil rights issue.  If their diversity is part of their makeup they believe it’s their right to be accepted and supported “as-is.”  They should not be made into something else – especially against their will – to fit some imagined societal ideal.

The difference – and this is a big sticking point for neurodiversity opponents – is that racial or sexual orientation differences do not functionally disable a person whereas neurological differences can.  That reality makes this situation much more complicated.

It’s also worth noting that neurodiverse people generally look just like anyone else.  Therefore, when we act in unusual or unexpected ways we may elicit unwanted negative responses from an unaware public.  For that reason it’s important for all of us who are different to learn the basics of getting along in neurotypical society.  Some see this as unacceptable compromise but I see it as recognition of an unchanging (or very slow to change) reality.” – John Elder Robinson author of Image of Look Me in the Eye: My Life with Asperger's

 

 

via What is Neurodiversity? | Psychology Today.

Scientists Discover a New Part of the Human Body | Mental Floss

The discovery, published in Nature, has shaken up the scientific community. The study was headed by Antoine Louveau, a postdoctoral fellow in the lab of UVA’s Jonathan Kipnis, director of the Center for Brain Immunology and Glia. The team detected the vessels after Louveau developed a method for mounting a mouse’s meninges (membranes covering the brain) on a slide without ruining the delicate tissue. When he saw vessel-like patterns in the distribution of immune cells, he tested for lymphatic vessels—and the results surprised everyone. They were also able to find the vessels in human brain samples.

‘This find is the neuroimmunological version of stumbling across a unicorn. Not only had the system gone undiscovered until now, but textbooks argued against its very existence. As a result, neuroimmunologists have struggled to understand the mechanisms of brain drainage and inflammation.

When all other tissues in the body become inflamed, molecules or pathogens are drained into the local lymph cells, where immune cells get activated to continue the fight. “In the brain, we thought this system didn’t exist. When we first saw those vessels, I completely freaked out,” Kipnis tells mental_floss. “This discovery is as exciting as it gets.”’

via Scientists Discover a New Part of the Human Body | Mental Floss.

Why I am Against Autism Speaks (and you should be, too) – The Caffeinated Autistic

Among people I know who are autistic or live/raise/support someone who is autistic, Autism Speaks is a heated topic.

My personal opinion about the autistic brain is that it is not something to be eliminated or cured. The level of an individual’s function is really at the center of this debate. Would my life be better if I weren’t on the spectrum? Would the lives of those around me? How much of a drain on my family and society am I, really? Am I someone who needs to be fixed? I found this piece by The Caffeinated Autistic to be an interesting read because it is a case of an autistic individual exhibiting self-advocacy.

My brain doesn’t work like the neurotypical brain, and that’s okay. I’ve gotten by this far. I think that charitable organizations for any condition should directly improve the quality of life of the people who live with that condition. Individuals who are on the low-functioning end of the spectrum need advocates for their experience and research into ways to help provide alternative means of communication. All autistic people deserve a baseline quality of life and compassionate support no matter their level of function. Autism is not a disease. It’s a matter of neurological wiring.

Have a read:

 

Autism Speaks is the most well-known autism charity.  They have the most media coverage and are endorsed by many celebrities, but this certainly does not make them a good organization.

Autism Speaks does not have a single autistic member on their board.” – The Caffeinated Autistic

 

Why I am Against Autism Speaks (and you should be, too).

Healing Trauma

I’m still not back in Biofeedback therapy. My nausea is still somewhat quelled, so I’m going to call that a Botox triumph. Art therapy. Phew. Art therapy is entering a very interesting and threatening territory.

Trauma trauma trauma.

We’re reading Healing Trauma: A Pioneer Program for Restoring Wisdom to Your Body by Peter Levine together, my art therapist and I. The theory is that trauma in our life causes physiological responses that cause the body to react in weird ways and we have to help the body learn how to reestablish boundaries and a feeling of safety.

Trauma is a sense that our very lives are threatened.

I’ve been in situations where I’ve had that feeling more times than I can count on both hands… possibly both feet too. I lived that way for a long time.

What happens to the body of a young autistic girl who lives in a situation in which she is constantly afraid? And how will her body respond 20 years later?

My art therapist thinks that helping to heal the wounds of my trauma will help to let my brain relax. She thinks that my chronic condition will be helped. Okay, so I’m game.

But the nightmares have already begun.

TED Talk: How Autism Freed Me to Be Myself

AS/HFA | My Brain Hates Me

AS/HFA | My Brain Hates Me

AS/HFA | My Brain Hates Me

AS/HFA | My Brain Hates Me

niansahc |Empathy, Autistic Spectrum Disorder, and Bees

From my Tumblr blog…

Let’s start with bees.

Bees dance and each dance communicates something different. If you are a bee and you know what the hell the other bee is dancing about, then everything is cool. “Happy bee dance? Awesome! Let’s do the happy bee dance. Flowers and pollen in a field over there dance? Spiffy! Let’s do the dance that shares this information with the other bees and then go get pollen noms!”

But what if you’re a bee who doesn’t know what the other bees’ dances mean? A bee buzzes up to you, starts dancing, and you’re like, “Oh cool. Dancing.” The bee dances. Then the bee looks at you and dances some more. You dance back but you’re not connecting. Yeah… dancing. Yay. The other bee gets frustrated and buzzes off. Hmm. Not yay?

You understood that there was dancing. You understood that it was supposed to mean something. You understood that you were supposed to dance back. What didn’t connect in your brain was what the dance actually meant. Was it a happy dance? Was it an informative dance? Was it an angry dance?

There you are, full of all of this dancing energy from all of the bees dancing around you. You sense that there are moods to the dances, but you can’t figure out which specific dance moves go with which specific buzzes or information.The misconception about people with Autistic Spectrum Disorders is that they lack empathy. It is true that some autistic people struggle with empathy.

Empathy skills, like autism itself, fall along a spectrum in my opinion. The ability to recognize that an emotion is happening is different from the ability to distinguish one emotion from another. And the ability to react appropriately to whatever emotion an individual presents you with is another skill all together.

Empathy is often described as the ability to put one’s self in another’s shoes. The autistic mind is not wired to do this in the traditional sense, but there are ways to work around it.So when I, the autistic bee, encounter an emotional dancing bee, a few things have to happen before I understand what is happening. I have to go through a mental catalogue of “dance moves” that I know are associated with certain information and try to figure it out from there.

I’m 34. I wasn’t diagnosed as a high functioning autistic individual until I was 33. I have gone through life figuring this stuff out on my own and failing at interpersonal relationships. Most of my interpersonal skills come from acting/theater, watching far too much television/cinema, trial and error mostly error, and the corporate world which had specific rules about how to interact with customers at which I excelled. Therefore, I have the basics down. A smile means happy, but if it is not carried up to the eyes, it means it is not a genuine smile and then it becomes problematic an cryptic for me. Crying can mean happy or sad so I have to use contextual clues. Angry people talk through gritted teeth and furrow their brow and raise their voice. But happy people can also raise their voice. Sometimes people raise their voice and pretend to be angry as a joke, and that can be upsetting to me. Sometimes I just straight up have to ask how someone is feeling.

I can do the bee box step, but not the bee fox trot.

I find that I am more “empathetic” to people that I care about and spend time with. It makes sense that the more time I spend with someone and the more emotionally invested in them that I am, the easier it is and more devoted I would be to read their moods. In fact, I suffer from a hypersensitivity to their moods and struggle to build a temporary wall between their emotional energy and my own. This often leads to me feeling overwhelmed, and even adopting their moods, regardless of how I originally felt.

I start doing their bee dance even though I don’t really understand what their bee dance may mean, why they are doing it, etc… etc…

Autistic individuals suffer from sensory overload, and I truly believe that emotional overload occurs as well. Today, I am taking time to rest and care for myself.

I’m tired from all of the dancing.

-by M. Chastain Flournoy, 2014

via niansahc |.

Wendy Chung: Autism — what we know and what we don’t know yet | Talk Video | TED.com

Wendy Chung: Autism — what we know and what we don’t know yet | Talk Video | TED.com.

Check out a great talk from Wendy Chung about the rise, causes, and broad manifestations of Autism Spectrum Disorder.

 

How to Lose a Therapist in Two Sessions

I feel like I have too much to cover for one blog, so I will focus on the matter at hand: I’m trying to dump Dr. B., my Psychologist.

I started genuine art therapy with T.W. (I really need to find out what to call her because calling her by her full name all the time isn’t charming in the least) and I love it. I also saw Dr. W. for my biofeedback consultation and we’ve agreed to start something called LENS (low energy neural something or other- I’ll look it up later and write all about it once I’ve actually done it so I am truly informative and not just spouting bits from Wiki articles and medical journals.) Both of them agree that I have a rich history of fucked-upness and lots of fun things to address.

Which brings me to Dr. B.

I fully intended to break up with him on Friday. I had this big plan. I was going to go to my psychotherapy session. I was going to tell him I was seeing these other mental health care professionals. I was going to say that it wasn’t him, it was me, that I felt they were a better fit and that to save money I should cut him out. I was going to leave gracefully and thank him. It was going to be smooth and beautiful and, dare I say, perfect.

Obviously, that isn’t what happened. The first thing that went wrong was that my husband drove me to my session, and he took a route I have never been. Now, this wouldn’t be an issue if you weren’t me. But I am me and I have a way that I go to therapy and I started panicking and wringing my hands and fretting that we were going to be late. The chemical reactions that cause me to have meltdowns began. I didn’t know where we were. My husband was telling me it was going to be okay. Of course I didn’t trust a word coming out of his mouth. He was sabotaging me. He was my enemy and trying to undermine all of my plans.

We arrived at therapy on time with no issues.

I felt better.

Boy oh boy, was I chemically keyed up though.

I did well. I got through the bit about seeing other therapists.  He took it well. He was dismissive, as expected, about the art therapy, but positive seeming. He was more interested in the biofeedback stuff. Then Dr. B. thew me a curve ball and actually asked a productive question. It was if he had been taken over by some other Psychologist. Was this really Dr. B.?

“So you mentioned wanting to work on this depression,” he said, “can you tell me what it feels like?”

I told him about how it felt… in all of its not wanting to wake up in the morning, wet blanket glory. His response was to tell me that I have a lot of rules in my life and that I need to relax. He became very focused on my OCD behaviours that bring me comfort and make me feel in control.

He said, “I’m not yelling at you, but I’m yelling at you…”

Which of course triggered a huge negative response, because I suddenly felt like I was in trouble for the things that I do that bring me comfort, like putting on lotion and lipgloss and chewing gum in the car. He asked me if it was a relief when I didn’t have to get all dressed and primp before leaving the house. I told him that I feel naked and exposed and I miss being girly and presenting myself well.

I was entirely stressed out. He was telling me that the things I love to do because they make it easier to face the world were wrong and causing me to be uptight. He was calling me uptight. I was on the verge of tears. Then our session was over. No cool down. No, “Are you okay?”

I just left. I sobbed in the car and asked my husband if the things I did were so wrong. I’m crying now as I type this because I still don’t know. I don’t feel that any mental health professional should make me feel like the things I do that bring me comfort are wrong. He didn’t offer solutions. He just made me feel like my rules and my self-guidelines and my structure… all of it is wrong.

I’m autistic. Structure keeps my world in check. It helps things along. I have been more lax about things and socially active with the Lexapro and I consider this good progress, normal progress.

There have been so many people telling me I am uptight lately. That I place too much emphasis on appearance. That I have too many rules. I have these things because they help me function in the world. I do know how to relax. It’s just difficult.

It’s difficult. That’s what biofeedback and art therapy are helping me with.

I don’t know how to dump Dr. B.. I don’t know that I can go back there and be assertive. He made me feel like a child who was in trouble. I shouldn’t feel that way in a mental health setting.

I did not make another appointment.

It has made me think a great deal about who I am and my rights as a person. I feel like it is okay for me to have OCD behaviours if they aren’t interrupting my life or causing me to miss out on anything. My depression and anxiety are deeply rooted in things from my past that my art therapist is going to help me cope with. She recognized a lot of loss. She’s correct. I don’t handle loss as well as I could and it makes me hold on to things to feel in control. My husband has actually helped me with some of my tendencies to hold on to stuff. I don’t keep stuff like I used to. I am able to throw away things an donate things where I never could. I have made a great deal of progress as an adult human. I recognize and celebrate that progress. I have also backslid in some of my social skills because I am home and away from people due to being in pain. I am trying to be more social to rectify that. It is very hard and very taxing, but I am trying my damnedest. I am focusing on mental well-being.

I also have a friend focusing on the spiritual goings-on in my home, and since he has been doing whatever he is doing I have been going to sleep when I hit the pillow an sleeping through the night. Coincidence or otherwise, I don’t care. A full night’s rest every night for nearly a week is something I will gladly accept, no matter the cause.

Comorbid Psychiatric Conditions in Autism Spectrum Disorder (ASD) – West Palm Beach Autism & Education | Examiner.com

“Children with ASD frequently have co-occurring (comorbid) psychiatric conditions, with estimates as high as 70 to 84 percent. A Comorbid disorder is defined as a disorder that co-exists or co-occurs with another diagnosis so that both share a primary focus of clinical and educational attention. Research indicates that children with ASD have a high risk for meeting criteria for other disorders, such as Attention Deficit/Hyperactivity Disorder (ADHD), disruptive behavior disorders, mood, and anxiety disorders, all which contribute to overall impairment.”

via Comorbid Psychiatric Conditions in Autism Spectrum Disorder (ASD) – West Palm Beach Autism & Education | Examiner.com.

My Aspergers Child: “Emotionally Fragile” Childen with Asperger’s & High-Functioning Autism

I thought this was a really great article. Check out the entire piece by clicking the link at the bottom:

“Emotionally fragile children are often considered at-risk for dropping out of school, suicide, criminal activity, as well as being diagnosed with a learning disability. Nonetheless, with the appropriate supports in place, these young people have been shown to have enormous potential to succeed.”

via My Aspergers Child: “Emotionally Fragile” Childen with Asperger’s & High-Functioning Autism.

Conductor Doggies

Make me clap. 

 

That is all.