Writing and Distraction

When you are an adult and read more and more about the disorders which have somehow plagued (/blessed) your life for decades, it becomes really apparent that resources about disorders, while often are helpful, are not nearly as helpful, uplifting, or inspiring as engaging with others who experience the same feelings, emotions, habits, etc. that you do. Some of the best reading I have done, especially in relation to autism and bipolar disorder, were written by those who have been diagnosed as autistic or having bipolar disorder. In a previous post I mentioned that some therapists still to this day regard autism as a disorder, when in fact, it is not. It is a neurotype, and should be treated as such. Likewise, we treat being bipolar as having a disorder, and while it is most certainly still classified as such, I feel that being bipolar is a lot like being autistic- it isn’t something you have, rather- it is just how your mind works. Genetics, conditioning, environment, experience all plays its own individual role in the manner or extent the disorder affects your day to day life.

General mental health studies refer to alternative thought patterns that would not be considered “healthy” or “normal” as disorders or illnesses. Therefore, they are treated as such. Whether your mind produces lack of happiness, motivation, attention span, stability, or an over abundance of various moods or personality traits, we tend to treat anyone who thinks or reacts “differently” as having a “problem”. I see this in of itself as problematic. We would not experience the incredibly vast ocean of art, music, film, comedy, sports, literature, scientific, medical, and technological advances, so on and so forth, had it not been for people who “think outside the box.”

One of the best videos I have seen in discussing the drive, humility, and overall nature of an outcast would be Rodney Mullen’s short twenty minute video relating to his skating career and the resilience skaters have in finding their own unique styles and abilities, and their challenges in shaping their communities and honing their skills. Even the manner in which he speaks and moves and makes eye contact and how excited and emotional he gets rocked me to the core, as I witnessed someone who I thought just fucking gets it. How refreshing is that? For someone like me? EXTREMELY.

We see a lot of media about mental health and well-being and how to achieve better by blah blah blah. There is a lot of exposure relating to depression, anxiety, and adhd. Bipolar, schizophrenia, and borderline? Not so much. Years ago, I wrote a blog post (wish I could remember the link!) about borderline personality disorder. As I’ve said before, I was diagnosed as being bipolar when I was 15, and borderline is a bit like bipolar. Additionally, being autistic can introduce you to these “disorders” and you may feel overwhelmed in learning that you are just different. Guess what- it’s okay.

I know it’s okay because I am thirty five years old now and I’m still here. I made it. I work multiple jobs and have multiple hobbies and have raised a child since I was nineteen years old. Is my life a rollercoaster? Yep. But whose isn’t these days? Distractions are everywhere. There are noises everywhere. There are bright screens and colors and shiny objects in your face everywhere. Stimulation is constant. And hey, that reminds me- I forget shit constantly.

You know how I know distractions exist? I initially had the idea of writing about adhd and when I began to actually write, I wrote all those things above instead. Anyway, let’s talk about adhd now, shall we?

This is a paper I wrote in 2015 and I wanted to share this with you to shine some light on the research that continues to shape the way mental health providers diagnose and treat a person who is hyperactive and gets easily distracted:

  • The purpose of this post is to provide information related to the treatment of children and adolescents diagnosed with Attention Deficit Hyperactivity Disorder (ADHD).  Thorough knowledge related to this topic is imperative in pediatric primary care settings.  The diagnosis of the ADHD condition is prevalent, and the prescription of stimulant medication is a common treatment choice.  The advanced practice nurse practitioner (APRN) must serve as the patient advocate and recommend treatment modalities that maximize patient outcomes. 

ADHD is defined by the “DSM IV criteria as hyperactive, impulsive, or inattentive behavior that causes impairment prior to seven years” (Vierhile, Robb, & Ryan-Krause, 2009, p 1).  ADHD is a chronic condition that affects millions of children, and its effects may continue into adulthood.  The current statistics are staggering for ADHD incidence: “up to eleven percent of four to seventeen year olds have had the diagnosis, eight percent currently have the diagnosis, and six percent of those are receiving medication for ADHD” (Felt, Biermann, Christner, Kochhar, & Van Harrison, 2014, p 456).  Levy et al. (2014) found that a positive link exists between the impulsivity associated with the ADHD personality and the risk for future risk taking behavior, such as substance abuse.

The prognosis PICOT question that is pertinent to this topic is as follows: in children and adolescents diagnosed with ADHD, how does the utilization of education and behavior therapy compared to not receiving behavior therapy influence the risk of subsequent substance abuse over a ten year period of time? Behavioral therapy has been confirmed as an effective treatment modality in ADHD patients (Antshel, 2015). The ten year time frame should cover from adolescence to early adulthood, the period that is most associated with substance abuse behavior. 

The goals of ADHD treatment are to improve symptoms and to maintain an appropriate level of function. In order to provide a proficient level of care, the APRN must be aware of current interventions. Research is necessary to determine if education and behavior therapy are an effective treatment for the risk of substance abuse in children and adolescents diagnosed with ADHD. The challenge for healthcare providers in dealing with ADHD conditions is to intervene early and to provide the best treatment plan that optimizes the patient’s long-term condition. 

References:

Antshell, K. M. (2015).  Psychosocial interventions in attention-deficit/hyperactivity disorder.  Child & Adolescent Psychiatric Clinics of North America, 24(1), 79-97.

Felt, B., Biermann, B., Christner, J.G., Kochhar, P., & Van Harrison, R.  (2014). Diagnosis and management of ADHD in children.  American Family Physician, 90(7), 456-464.

Levy, S., Katusic, S.K., Colligan, R.C., Weaver, A.L., Killian, J.M., Voight, R.G., & Barbaresi, W.J. (2014).  Childhood ADHD and risk for substance dependence in adulthood: A longitudinal, population-based study.  PLoS ONE, 9(8):e105640. doi:10.1371/journal.pone.0105640 

Vierhile, A., Robb, A., Ryan-Krause, P. (2009).  Attention-deficit/hyperactivity disorder in children and adolescents: Closing diagnostic, communication, and treatment gaps.  Journal of Pediatric Health Care, 23(1), S1-S21.

Discussion Response

I have a close member of my family who was recently diagnosed with ADHD at nineteen years of age. He was not diagnosed in childhood, but as he got older, he found that he was often bored and craved for some sort of stimulation. He made impulsive decisions that only later he would think about and feel shame and embarrassment over the poor choices he had made. In college and newly diagnosed with ADHD, he had found that he was starting to drink before he would study. Just a beer or two, but it seemed like he needed it to slow his mind down enough to concentrate on the material he needed to concentrate on. He was also suffering from very low self-esteem, because he felt he was dumb and couldn’t learn very well. His well-wishers could see him opt for bad choices and see where this could quickly cause someone to lose ambition and follow a self-destructive path. The fact is that stimulant type drugs can slow the racing thoughts of a person with ADHD and make them feel more “normal”. He was actually shocked when he was first put on stimulant medications because he noticed the insomnia he experienced since childhood was finally cured.

As you can see, someone diagnosed with adhd later in life can absolutely occur. The same applies to any other disorder. Additionally, it is my personal belief that any person could schedule an appointment with a counselor or Psychiatrist and sixty minutes later, walk out with some type of diagnosis/es. The extent which the diagnosis/es affects your life is ultimately up to you. Can you embrace who you are and how your mind functions? Can you cope with the habits, ticks, moods, traits, stimuli, fears, etc. in life, in school or on the job, or while you’re alone or in a huge crowd at a concert?

Why don’t we ask these questions instead:

Can society accept you for who you truly are? and more importantly,

How can society function in such a way that is more accepting and accommodating to those who are considered or classified abnormal?

What do you think about mental disorders?
What do you think about the conversation about mental disorders?
What do you think about current available treatments?
What do you think about the way you think?

The Horrible Bitch that is Dementia

This entry was originally published on my website, Live Onawa, January 12, 2021.

I’ll begin by sharing a paper I wrote back in 2015 exploring the use of non-pharmacological therapies to engage a person with dementia. Beginning here:
The purpose of this statement is to substantiate my view that simulated social stimulus in the form of a life-like baby doll or stuffed animal helps in engaging a patient with dementia in a nursing home setting to generate warm feelings and reduce agitation. Through this research, I wanted to examine non-pharmacological interventions to deal with dementia patients during aggressive behavioral outburst. Is it really useful in creating a distraction from harmful or threatening situation? It seems to me that the dolls keep the dementia patients distracted more than those who do not have one. Some authors consider doll therapy as controversial due to its ethical nature and consider doll therapy as “infantilizing for patients who end up being treated like children” (Hughes et al., 2006). Perhaps dignity is the issue for some, however, certain things are done for the safety of the patient, and I personally see no reason not to use this method if it is effective. Although, in order to achieve the greatest likelihood of success, it is important for the caregivers to understand the patient’s attachment/relationship with the stimuli, cognitive status, and past history. Meaningful stimuli needs to be considered and explored to maximize the desired benefit for persons with dementia. It is pertinent to conduct more trials with less bias and with larger samples to see the efficacy of such non-pharmacological interventions amidst our dementia population. In my experience, there have been instances in which the doll caused more distress. For example, one patient became distraught because she didn’t know the dolls’ names and felt they had been abandoned. Otherwise, I have seen mostly positive results. Interpretations of doll/stuffed animal therapy enable health care providers to maximize the positive outcome of providing stimulus with greatest likelihood of success (Cohen-Mansfield et al., 2010).I interviewed a Nurse Practitioner (NP) who works in the dementia unit of a Nursing Home (NH) my employer services. She has witnessed positive results in the NH when a doll/stuffed animal has been introduced to geriatric clients. According to her, this sort of stimulus seems to fulfill a sense of purpose, and provided a calming effect while keeping the patient engaged. She emphasized the doll/animal should appear as realistic as possible (S. Hasgrove, personal communication, January 20, 2015). This NP’s experience corroborated with the results of Ellingford et al. (2007) post study analysis that “These authors found an increase in doll users’ positive behavior following the introduction of the dolls and a reduction in negative behaviors and aggression”. Amongst geriatric patients suffering from dementia in nursing home settings, how does simulated social stimulus like doll/stuffed animal compared to no stimulus reduced behavioral disturbance and wandering within three months of exposure to stimulus? In conclusion, this finding is consistent with studies showing that increasing resident engagement through individualized activities is associated with decreased agitation. However, we cannot disregard the severity of dementia that is a significant factor, as severely demented became increasingly disengaged from the stimulus overtime. Future research should focus on the development of targeted individualized interventions based on the cognitive and affective profile of dementia patients with behavior disturbance. Reference List:Cohen-Mansfield, J., Marx, M., Dakheel-Ali, M., Regier, N., Thein, K., & Freedman, L. (2010). Can agitated behavior of nursing home residents with dementia be prevented with the use of standardized stimuli? Journal Of The American Geriatrics Society, 58(8), 1459-1464. doi:10.1111/j.1532-5415.2010.02951.xEllingford L., Mackenzie L., Marsland L. (2007). Using dolls to alter behavior in people with dementia. Retrieved from http://www.nursingtimes.net/nursing-practice/specialisms/mental-health/using-dolls-to-alter-behaviour-in-patients-with-dementia/201683.articleHughes J. C., Louw S. J., Sabat S. R. (2006). Dementia: Mind, Meaning, and the Person. New York: Oxford University Press


Now, I have worked in mental healthcare facilities from Cullman to Decatur to Madison to Huntsville, and have scribed for geriatric providers who see nursing facility residents who suffer from this God awful disease that affects the brain in the literal sense. Because it physically affects the brain by shrinking some areas, depending on which areas are most impacted, the loss of brain tissue negatively impacts the person’s processes of speech, thought, motor abilities, etc. Whether ripping the person from their fond memories, or the sense of who and where they are, their social or communication skills, or their physical capabilities, there are a number of ways that this disease affects the person. If you have never cared for someone with dementia and have no experience witnessing its effects, you would be amazed at the every day tasks we perform effortlessly without realizing how impossible it might be for anyone else. Most of the notes I scribed were vague and consistent, using very average and uninspiring treatments that basically allowed the provider to be on her way. Week after week, I would see either stability or decline, no real progress- nothing to leave me with a satisfactory feeling. This troubled me, especially years later, after having experienced working with dementia patients first hand.
To elaborate, I have also worked as an activities director in a nursing facility that maintains a hall specifically treating men and women who have been diagnosed with various forms of dementia, including a majority who suffered with Alzheimer’s Disease, Parkinson’s Disease, and forms of dementia likely brought on by severe trauma and even heartbreak. For example, a prominent community doctor began showing signs of dementia shortly after his daughter was murdered in cold blood by a stalking ex-boyfriend. This incredibly educated, hardworking and caring man just shut down, and I was able to communicate with him during our time together because I could look him in the eyes and give him encouragement to do a task as simple as removing his shoes, whereas other facility workers often had difficulties and would require an additional worker to assist, using (gentle) force. But I somehow tapped into his emotional distress, found him, and was able to communicate in such a way he would willingly follow my soothing tone, in giving him simple step by step instruction. I was also able to communicate with a woman who was once a successful and independent business owner and prominent community leader (especially in her church family) in a way that was so efficient, other colleagues (including nurses and her therapists) often called me the “Betty-Whisperer”. (Her name is changed for privacy issues.) This woman would fight and scream and act like a completely different person unless I was present. I would use a calm, light tone and was incredibly patient and would use distractions sometimes in order for her to follow instructions in order to get her dressed, fed, or participate, etc.
Both of these superb people whom I love have since passed on, which in a way, I look at as a blessing to their own benefit because there is not one shred of doubt where their souls now reside. But that’s another thought for days that have already passed, too. And I moved on to other things now- although I’ll carry those lessons with me always.
I write this ahead of the real message I want to share to give you an idea of how challenging it is for us- people who do not have this disease- to understand and communicate with people who do. If we just take time and effort to listen, you will be astonished at what you might learn. Now, on to my story about my experience in listening to a particular person who would have lengthy and repetitive conversations, someone who helped me understand an issue that it still prevalent today.
Changing her name to protect her identity, I will use Rose.
Rose was a lively, organized, and educated woman. She kept up with the date, marking her calendar daily, took notes (a bit sloppy and unorganized), could mobilize easily with her walker, and was very well groomed and socially active. She loved participating in all group activities, especially activities outside. She is now 89 years old, and has lived with dementia for a number of years. She holds a Masters Degree in English, was a world traveler, a nationally acclaimed competitive dancer, and worked and retired from the Redstone Arsenal in Huntsville, Alabama. In her time working for the US Government, she wrote pocket manuals, assisted big wigs, watched countless rocket launches, and even laughingly expressed to me that she and other government employees would “take a bus to Nashville to see the Grand Ole Opry every weekend on taxpayer money.” Amazed, but not surprised in the least, would be my reaction (the first, second, and twenty-third times in hearing her story). What was surprising to me, however, is the fact that she is (and often spoke about being) half Cherokee. It isn’t everyday you encounter a half-Cherokee world travelling woman in Alabama at her age who holds a Masters and is retired from a still prominent government facility. But she would, very precisely, detail these concreted stories about her life because it solidified her identity- one of the few things she was able to hold on to. (Imagine losing a husband of forty years, your career, your opportunities to travel, your home, your independence… imagine how sane you would be.)
In almost every verbal encounter we exchanged, she would never fail to mention that her mother was a full blooded Cherokee. She told me this because she sensed I was of a similar heritage and she asked me if I had any Cherokee blood in my family, to which I said yes. She would then talk about her mother, who was an expert seamstress and taught her how to sew. Her mother had two children- Rose and another son, who had “white cotton hair, fair skin, and blue eyes”. I couldn’t help but think- “I wonder what that must have been like, considering she was physically polar opposite and had been uprooted from her way of life to be acclimated to the white society she was forced into.” Nevertheless, Rose always claimed her mother loved life and was just happy to be a part of the society so that her children could get an education and all the benefits that come along with the acclimation.
Still, my heart continues to break- especially now, after all the recent events involving native peoples and their rights, land and culture, etc. It really is a shame that one has to acclimate to another society just to thrive in this life. It is, without a doubt, very unfair. This is what prompted me to share this particular story. I have heard numerous times from Rose that she “just had the best life- there’s not a day I don’t regret”. That makes me happy to hear, especially considering the unfathomable sacrifices her mother- and no doubt her mother’s own family- had to make in order to gain benefits only offered to those who followed suit. It must have been deeply painful for her, which is likely why she was such a dedicated mother and fervently took part in one thing from her heritage that could be carried over into the American pattern- needlework, a pastime that she taught her own flesh and blood.
Rose was subsequently moved to another facility to be closer to family, and I have not seen her in over a year’s time, but I imagine she is still sharing her very important narrative with any one person who is willing to listen. I hope they can take similar lessons away from her just as I have.

If you know or love anyone with dementia, especially if they are still under facility quarantine, please understand their best treatment is your presence of mind in speaking with and listening to them, and that’s if they even have the ability to speak. Otherwise, look into a lifelike baby doll. You’ll be amazed what a little music can do, too.
For more information on the challenges of being indigenous and to learn how you can better support these suffering communities and the independently owned businesses launched by these hardworking people, I encourage you to visit these websites:
littlecheiis.com

onefastbuffalo.com

linktr.ee/nativewomenswilderness

uihi.org

indianlaw.org

culturalsurvival.org

indigenouspeoplesresources.com

Ashley is Autistic

It took years- nearly thirty-two- for me to reach the conclusion that I am autistic. Even now, at thirty-five, I started to type that I “have” autism, when in reality, this doesn’t make much sense to me. And, in developing relationships with people in the community, I have found that they agree. Autism isn’t a disease. It isn’t a mental disorder. It is just the way our brains function. It is simply who we are.

Everyone is different, no doubt. Everyone has a unique way of thinking. Autistic people tend to think in such a way that someone with a “normal” sense of the world around them may look at them as though they are from an alternate universe. Autistic people are commonly outcast, or tend to fade into the background in social situations. Social cues are difficult to catch, and many times a crowd of people can be overwhelming. Autistic people usually take everything at face value, and it is sometimes difficult to understand why a person feels or thinks the way they do. So, like someone with a “normal” thought process, autistic people are equally baffled at the way other people generally feel. Small talk is annoying, for example. I honestly could care less how your day is. What I want to know is if you had any challenges that arose and how you dealt with them, and how I could potentially assist you through your struggles. This isn’t to say that I won’t listen to or engage in small talk, it simply means that I enjoy deeper, more meaningful conversation. The kind of conversation most people don’t feel comfortable with. It sucks, but I believe engaging with the autistic community over the last few years has allowed me to really connect to people who make sense to me, and people who have helped me make sense of myself. It has been special and empowering!

Autistic people have various characteristics, but share a lot of similarities in the way we think. The sensations we feel. The ticks and habits. The mood swings. The intensity. The drain. The STIM. It is exhausting coping with the every day life tasks for an autistic person. And a little secret for those who might sense you are also autistic- the society we have built is not very accommodating to those who think and feel the way we do. In fact, I had to do my own independent research for years to even get a grip of what, why, and how I feel and think. Psychology has always been an interesting subject to me, and after working in mental healthcare and completing two semesters of psychology, along with my own reading, I believe that my being autistic plays a big role in this general curiosity about the human brain. The shitty part about all of this is that all of my former research, prior to reading a book written by an autistic savant, doesn’t give autism any amount of justice. Autistic people are badass, and the more we engage in sharing our stories, the more we are lifted up in the community, and the more we can see that there is still a lot of work to be done in the general field of mental healthcare.

There are very limited resources, especially here in the American south, that paints the full scope of what autism truly is. So, please allow me to give you some more insight and resources. First, I will explain the reasons I felt strongly that I am autistic. If you are unfamiliar with psychology or autism, none of this will make sense to you, but these are some things that, I strongly feel, played a role in my being autistic:

Genetics (although it’s yet to be proven, I do believe other family members are autistic, my mom and daughter being among them)

I was born addicted to Phenobarbital, a seizure medicine (not a good thing)

Took early interest in music and film (Listening and rocking back and forth to music for hours, crying at movie scenes as early as age 3)

Fractured spine and concussion age 8, was confined to a reclined wheelchair, body cast, and home tutoring for nine months

Wrote a lot, won essay contests and participated in Writers Conference throughout school- very vivid imagination

Family trauma, developed bipolar disorder entering puberty

Fractured spine again, age 18

Family trauma, ten car accidents, PTSD

Hyper sensitive to loud, high pitch noises

Special interests in photography, art, nature conservation, human rights, etc.

So, there are multiple factors that can play a role in a person being autistic. The cool thing- and I can not yet explain why- is that autistic people generally gravitate to each other. In other words, it is rather easy to navigate social situations when you lock on to other autistic people. And you typically stick like glue. My mother was non-verbal until she was five years old. Her first words were “Good gracious alive! Look at that big pink gorilla!”

I was her shadow. And funny enough, my sister was mine. The same can be said about the relationship of my daughter and me. It is as though a light bulb flickers on and we find our way, helping each other navigate through life.

I attribute my ability to cope so well to the support I received throughout my life. I was never forbidden to spend hours at a time in my room, wearing headphones, blasting music in my ears while “dancing”. I was never forbidden to wear my hat backwards. I was never forbidden to cling to my security blanket (until I passed it down to my own daughter). I was never made to feel like what I was saying or doing was weird, unless I was outside of my typical social circle. And even then, sometimes I would be completely aware of my weirdness.

On the flip side, I have experienced negative social consequences among my peers. I’ve been called a lesbian- as though that were some sort of insult- countless times. Whether it was my lack of fashion sense, or the fact I could care less to fit in, or because I didn’t flirt back, sometimes I would be made to feel as though I did not belong or that I was somehow a threat, or less than. I’m not a lesbian, but given that homosexuality is somewhat related to autism, it makes sense to me now. And I still could care less. It is just yet another obstacle that our communities which aren’t quite cookie cutter enough have to navigate in order to somehow make our living. That, I feel, is the exhausting part. The good news is, more and more people are becoming aware of this. And the better news is, more and more people are becoming accepting of this.

Born on a Blue Day is a book written by an autistic savant, Daniel Tammet. This fella is intelligent beyond words, and breaks autism down so well, that once I began reading, I couldn’t put it down. I felt like I was connecting to my long lost brother. It was so enlightening to me that, even after more than a decade of digging into psychology, everything began to make perfect sense. This, along with connecting to other people in the community, has been a blessing. I have completely not only accepted who I am, but fully embraced myself. In the past, I struggled immensely with questions. Why this? Why that? Now? Not so much. I love myself, and this helps me cope with bipolar disorder. It is a win win- for everyone.

So instead of society trying to sweep the stigma surrounding autism, bipolar disorder, mental health under the rug and pretending like everything is just totally cool… look at it differently. I believe the stigma might be rooted in the negative events which have happened that were blamed on a person’s disorder. “This guy killed someone and pleads insanity”. When I make a mistake, I don’t blame it on anything other than my own stupidity. I’m not saying that mental disorders don’t play a role in producing thoughts that lead to making terrible choices, but the fact that they are blamed after the action makes me angry. This is something that should be said: mental disorders play a role in good things happening, too. The very same can be said about drugs. That is a subject for another day, but this is the truth. Bill Hicks said it first. And now that I think about it, I think he may have been autistic, too.

For more information on autism, visit these links:

Born of a Blue Day – DanielTammet.NET

#ActuallyAutistic and rejected by the autistic community | The Autism Cafe

Home | Autism Speaks

What is autism? – NHS (www.nhs.uk)