Book Review: Officer Clemmons: A Memouir

If you are a follower of Mr. Rogers Neighborhood, then you will certainly know the character Officer Clemmons. This character was played on the show by now Dr. Francois S. Clemmons from the show’s start in 1968 until 1993. The book is very detailed and thorough about his many rainbows of life with not only growing up in the Jim Crow and poor south, but struggling discovering his true identity and trying to fit in as not only a person of color, but as a gay person, thus doubling the rainbow for him. All this combined with issues within his home with his step dad and mother as they prayed for these latter feelings to go away was even so more difficult. Many times he would face many challenges, many similar to those on the spectrum face constantly.

His segway to Pittsburgh, WQED and what was known as “The Neighborhood” in 1968 was through his initial studies in Ohio at Oberlin College, then getting to Graduate School in the Steel City at what is now known as Carnegie Mellon University. There he would be introduced to Fred Rogers and the show through his early work by Francois working at the Presbyterian Church there. This was all during the 1968 MLK Assasination riots that litterally burned up the Hill District around him where he was staying in a boarding house, of which Fred wanted him to stay with him until the “Hill” got settled.”

Later when he signed on full time in the genesis of Mr. Rogers Neighborhood, Fred stated that someone in the studio caught him at the gaybar and that while Fred was okay with homosexuality, he suggested getting married because that was the thing to do. So in a few weeks he married a former classmate from high school although they lived together for a month before separating for almost four years before divorcing because his wife wanted to remarry. During that point he struggled with everything under the sun that several persons face on the spectrum today.

Nonetheless, he had countless ventures and committed to them over the years before and after Mr. Rogers neighborhood. But Fred himself intergrated many things in a time of uncertainty including sharing their feet in a kiddie pool of water during the tensions of the Civil Rights movement.

Needless the say Dr. Clemmons is an accomplished man and Fred helped him get there and I have included a few quotes from the book to emphasize that.

““Love isn’t a state of perfect caring. It is an active noun like ‘struggle.’ To love someone is to strive to accept that person exactly the way he or she is, right here and now.””

FRED ROGERS

““You did the right thing, Franç. You can’t run away from these bad experiences. People like that would love to see you defeated and humiliated. Stay strong and know that your friends and your family here in Pittsburgh will be praying for you. You can call whenever you need to, and when this is over, and it won’t last forever, you can shake the dust from your sandals and come here where your family loves you. You deserve our love and support.””

Fred Rogers

“There are many ways to say I love you
There are many ways to say I care about you.
Many ways, many ways, many ways to say I love you.
There’s the singing way to say I love you
There’s the singing something someone really likes to hear,
The singing way, the singing way, the singing way to say I love you.
Cleaning up a room can say I love you.
Hanging up a coat before you’re asked to
Drawing special pictures for the holidays and Making plays.

You’ll find many ways to say I love you.
You’ll find many ways to understand what love is.
Many ways, many ways, many ways to say I love you.
Singing, cleaning,
Drawing, being
Understanding,
Love you.”

Song by Fred Rogers

Book Review: The Hidden Reality of Autism

Yet another good Autism read. This one I found out from a Page creator from across the pond, Marcus Mitchell. Marcus struggled through many years being undiagnosed before becoming vehemently aggressive to the point the police had to become involved to the point he spent the night in the local police station before having his breaking point where he would be placed in a hospital 6 and a half hours away from home at the ripe age of 11.

Marcus shared of the typical autism traits. The anger, obsession, and just wanting to fit in while discovering his sexuality. He would recover and return home where he has a Facebook page, group and Instagram account with vivid content for the oftentimes undermarginalized autistic sub Community. Absolutely a good read!

Autism Being Stigmatized

With it being Mental Health Awareness Month nationally,  my day program for their weekly newsletter we were asked to give our opinion on the changes of stigma. While it has good and bad points, the autism community has its points also.
I have came across several disturbing points of misconception of Autism.

1. Family Guy mocking an autistic being unable to verbally communicate.

I’ve been a Family Guy fan since the first season almost twenty years ago and I do admit they push the boundaries alot of the time. It’s been a hotbed of debate. They were off a few years after season 3 but returned years later. The line continued to be pushed and I know if you don’t like it don’t watch it. That is a belief that I value dearly. However, when autistics are generalized, it hurts.

I recently came across a Facebook Watch video of dark special needs jokes of Family Guy. I thought I would have an look as Peter has memory clips he says that he was scared like the time he Sat next to the autistic person in the doctors office. The clip shows the autistic vocally stimming.

He was scared. I was done.

I admit I get scared sometimes about autistics that stim loudly or how to interact with them. I know that they can’t hurt me and they just want to get their point across just as much as I do. However, when you generalize the autistic community in those few seconds, it leaves a bad taste in my mouth. I know, I knew what I was getting into, but it just is a gross misrepresentation of the community. I do recall an early episode where his doctor diagnoses him as the R word, now a word no longer used (thank God) Nonetheless, it’s appalling because there so ones that are classified as such and are amazing people, regardless of their ability. Which moves us into the next misconception.

2. Being known as the R word or Developentally Disabled.

The R word is one I absolutely can’t stand. Prior to 2008 it was known as that. Those given that classification and some still live and endured the agony of being called it, being diagnosed it. Until a few decades ago the media used it like a household name, its just wrong and when I hear that word. It makes me ill.

Autism is a neurological condition, not specifically a physical or mental disability. Nonetheless, it’s classified in the DSM under the Developental disorders. Yes it can be coupled with other Developmental disabilities, but with the coupling as one Autism spectrum disorder, it’s misconceived as a development defect, which is not true for all autistics.A spectrum is just that. It’s a wide variety of symptoms and flaws. Myself I am proud of my Aspergers and fortunate enough to have the ability to inherit the diagnosis, the new diagnosis does a huge disservice to autistics that could have been diagnosed with Aspergers after it was coupled. Yes he was discounted for his works and beliefs and other information, it opened a door to a community for twenty years that made us feel better. We are not inferior to levels of ability, however we have a multitude of issues some similar and some not to the autistic community as a whole. It just doesn’t make sense. 

In many U.S. States and territories funding streams for autism are placed under the Developentally Disability arm of human services, again another disservice to the autism community because I personally feel with those of all ages receiving diagnoses services will grow and need to be more centralized. We shouldn’t be looked as less than others in any case we should be valued members of the community.

3. The belief that all autistics are heterosexual.

Recently, I read a blog from a prominent autistic that stated that one of the nations leading autism advocacy groups vehemently denies that 70% of autistics are not heterosexual. Now I know this will spark debate but I think it has to be acknowledged. Its the reason why many autistics debate and sometimes protest against the prominent advocacy organizations. It’s not sunshine and rainbows (for them), it’s not the picture they want to portray the picture perfect autistic. Until just this year, one of the largest organizations accepted that autistics don’t grow out of it and started to feature adults in campaigns. They are believers in ABA (think what you want) which has it’s pros and cons. 

You simply can’t be forced to identify yourself as something you hate being or trying to block something you really like because you are brainwashed to think one way but you absolutely feel the polar opposite. If we give autistics and others the freedom who they want to be, they should be allowed to so while being educated properly and in their terms what is appropriate and what isn’t. Sexual education, while essentially non existent in the special education realm needs to be taught or.advocated for,.again in their terms they they can understand..They have rights we should honor their wishes. Yes it has a great deal of issues but there’s helps and resources there.

4. The Tik Tok Autistic Challenge

Yesterday I saw a autistic professional speaker highlight this and I’m appalled.He shares my sentiment that it seriously sends the wrong message to youth that it’s ok for mocking the autistic community. We are autistics that are valued members of the community not to be mocked on the latest social media marketing strategy. It needs to stop and moderation must be taken to the fullest extent permitted. 

The Family Physician

Recently, I had the pleasure of meeting my fourth family physician. It would be the second one in the course of seven months. Before that I had a doctor since graduating from a pediatrician, of which I had two – one from birth and changing to my last one at the age of 10. However, after this last visit, although it was by phone, I was never so calm.

Now I don’t have white coat syndrome and needles don’t bother me a bit. I don’t struggle a bit with the pricking and prodding. It’s just this doctors demeanor was just difference and he had an awesome bedside manner.

Now I can think that many autistics once reaching adulthood do not truly rely on their family doctor due to our complex specialty needs that are farmed out. Oftentimes you’re just a case number on the computer, a knock on the door, a few breaths, a order to the pharmacy or lab, and after lengthy waiting, you’re on with your day. 

This was the feeling with the previous practice. I was with them for 10 years before having pneumonia.Otherwise I saw them once a year. When I began to develop symptoms, I visited the doctor on a Friday was given pills and told to call Monday morning should symptoms became worse.

They did.

I returned, was given a breathing treatment and ordered to go to the hospital. My first hospital stay other than psychiatric in my life. It was their hospital and I did like the care I received, however I was farmed out to a specialist, ordered a CPAP and oxygen. I didn’t get them. I did the follow up so I could return to work. 

Then things started changing.

After 10 years of seeing an actual doctor, I was farmed out to the nurse practitioner. She ordered labs for the first time ever with any family doctor. Then she discovered I had a elevated thyroid and ordered a medication.

She hooked me in. I would need to return six months later.

Over the course of that time I would experience the decline of my grandfather’s well being after my grandmother passed. He knew from the beginning the practice wasn’t good, they had a poor demeanor and the bedside manner wasn’t all that great, essentially when he wanted clearance to be operated for cancer when the beloved doctor said essentially we don’t want you to die on the operating table. He visited the nurse practitioner in his last months with us and was given pills ordered tests and sent on his way.

Should have searched for a new doctor, but I kept there.

The next few years went okay, meds and forms filled out as necessary, but was appalled when the giant healthcare system ordered I pay $10 for them to complete my driver permit form because was electronic.

Should have been searching, but was just in denial.

Then almost year ago. I got a phone call after getting blood work.

I was three hours from home at a conference, I was asked questions about by bathroom habits. I answered them honestly. They called back and stated I needed a colonoscopy! Keep in mind I was about to be 34. I asked how this was determined. They said answers I gave the phone call prior but they were in no way true. I told them this and they became very argumentative and I became a little frustrated. Nonetheless I apologized and refused the colonoscopy.

When I returned home from the trip. I did spreadsheet workup of my labs going six years back. From six years to that point the were if not the same or possibly better than years ago. They ordered me another pill and I began the search.

The year before I moved out on my own. I was two blocks away from my community hospital. Many have negative impacts about it, but they’ve been around for 130 years. They have a autism school (it’s ABA.driven, but it has its pros and coms), mental health services and  a.gym that I began using after a 14 year hiatus after going to th mega gym.Being a member of the community, I felt it was important to be community minded.

My parents have been attended by a doctor that is a family friend the past ten years. Through them I got on the waiting list and was seen by her Physicians Assistant, who was super nice and had an awesome bedside manner. I was ordered labs and pills and an appointment was scheduled for a few weeks ago.

Then COVID hit, and the practice was.shook up.

My parents doctor and her staff of 15 years all resigned and left the local hospitals practice and went to a neighboring healthcare system. As such for the time being she would be practicing for s some time an hour away. My parents chose to go, they asked me if I wanted to go. I decided to stay here in my small town and have the faith in the community hospital. As a result, my.appointment was.moved to this week.

Earlier this week, I discovered in the email appointment reminder who would be attending my case

The doctor is is local and male.

Now I had my doubts about this. I didn’t know if I had to go in person. Furthermore, I had fears the it would be like the practice I would have left to come here.

Then the appointment came, over the phone.

After consent to be treated over the phone. He came on.

The conversation began by him stating he spent time the day prior reading my case and was unclear about my diagnoses. There was both Autism and Aspergers, he was unsure what was the official diagnosis. After discovering when I was received my diagnoses, he determined that I indeed inherited Aspergers and my new GAD (Generalized Anxiety Disorder.)

He questioned my anemia and ordered blood work for it and said he would call me back with the results. He asked about my family history and social history. We spent a great 22 minutes on the call yesterday.The longest time ever with a doctor on a phone. 

I was pleased he wasn’t pushy or arrogant like I expected, just goes to show you can’t judge a book by it’s cover. By the way the only other male family doctor I had was my first pediatrician from birth to age 9. Maybe this will be a nice change for me.. It may be something I need without being ignorant about my physical health.

Here is to better health.

Where going to the next level, but nothing’s changing

So another week has came and gone. Last Friday, our State Government announced that effective this Friday morning we will be moving to the Yellow phase of the reopening plan for the reopening plan. However, not much in what was considered my regular routine will continue to exist. I have came to terms that if I do return to an independent setting in the new phase, I will indeed struggle and will absolutely relapse, without a doubt. My parents have been very accommodating by allowing me to stay with them through these trying times, and indeed they have been. They’ve offered me to continue staying here as they know right now it’s to my benefit to do so.

Now I don’t want to deny that in the so called “New Normal” that I will be able to manage, just in these uncertain times I need regularity and additional supports because most of what’s in my routine has been slipped away and even though in my prior routine I did take a day off from work and programming every week sometimes I did struggle.I personally feel that it’s best for me to continue to follow the present routine.

The media does push our government for the guidelines for the next phase, honestly no one in the world has the answer. There’s no vaccine or cure at this point for Covid 19 and there won’t be for some time and it has to be tested and pass through all the regulatory channels before being produced en masse. Nor is there a cute because no one is sure where it came from either.Essentially, it will take some time for either to occur. There’s also uncertainty about a second round of the virus returning this fall, thus restarting the whole process from the start

Coming back round circle to me, I am extremely anxious when going out in public. I do my part faithfully by physically distancing a following our state mandate of wearing a mask, but I get frustrated when others do not practice these new norms. Furthermore, even when stores place barriers and signage up, it is for a reason in order to ensure that we as customers are safe along with the masking and physically distancing. For me to.cross paths with another customer in an aisle going in the wrong direction, flying around me in a rush, not keeping their distance at a cashier stand or not even following the masking mandate not only irritates me but makes me fearful of my safety.

Yesterday was the first time in just shy of two months that I’ve had take out other than pizza. I visited the Subway in our Wal-Mart which like all restaurants is not allowing customers to dine in. I was astonished how clean and the safeguards taken for our safety like not leaving things out like straws, napkins,drink cups, etc. However when a customer takes a chair from atop a table because it’s placed that way for a reason, likewise this was occurring during my turn in line and it did distract me immensely as did the employees. It may have been innocent, but people across the country have been protesting against the restrictions, and I think to the point of obsession with this could be like the Woolworth protest during the civil rights movement, although it was peaceful protest, recent ones have been dangerous. Additionally as I was exiting the store using the designated exit process which required me to enter the store and then turn around and exit, upon exiting, a gentleman without a mask enters the store using the designated exit, nearly brushing up against me. He was scolded for his actions by the attendant who tallies the occupancy of the store. 

Now I know that some people may think it is obsession, but for the average autistic this is a additional topping to the challenge of doing my part to be safe along with tolerating a confining mask, therefore I feel that I am doing my part to protect them even though I have been healthy. I don’t want to come across as presuming everyone I brush into could be carrying the Coronavirus. Its just the simple fact that I am healthy and am doing my part as a member of the community, I just wish those that don’t comply had the same consideration for themselves as I do. Not only is it a “rule” , I just know for me being any stage of ill is no picnic at best, so I feel it is to my benefit to follow the advice of government officials. I don’t particularly like wearing a mask because it constrcts my ability to vocalize properly and it does hamper my breathing among other things, but I compromise and do it because it’s the best thing to keep myself and others safe.

My weight has been unchanged from being at home, however I have been drastically reducing.my soda intake over the past few weeks going from buying at least a case of soda a week to only having a few individual bottles a week. Now I do enjoy my sweet tea on a regular basis by getting my so called “twins” ( two half gallons) at the Wal-Mart each week. Sometimes I do indulge in chocolate milk but in smaller amounts.
Back  to the situation at hand. I have gradually become cognizant of my need to be with my family during this period of uncertainty.  They are diligent in reminding to perform normal tasks such as laundry and cleanup of the areas in their house I use. They have got me medicating again routinely, something I’ve been ill managing for over a year before committing them to following their directive. They make sure that I am awake when I need to be and being where I need to be when I need to be. I have realized that I need to be more consistent with my personal hygiene as many individuals that are on the spectrum are having trouble with as well so it makes me feel better that I’m not the only one that is struggling with this and I need regularity for now. However,everyone is struggling with the great deal of uncertainty right now so I feel that I will manage my present had I’m dealt with right now and see it as an opportunity to adult and grow.

Sacrificing For Those we Care About

First of all, please forgive me, for not writing for a while. I, like many other autistics are dealing with the struggles of a stay at home order in a unfamiliar environment due to the Coronavirus. I will elaborate on that in another post.

The main reason I had an inkling on returning to the blog to write is because for several decades of my upbringing, I continually struggled with sacrificing for others although I may not like it. This very issue has been a hotbed of discussion between myself and my parents, more so since I have been staying with them for some time now. Unfortunately my home was having repairs and is again ready, however the Coronavirus has put a delay on me having some essential furniture moved in, so I am in a holding pattern until our state government reduces the stay-at home order.

With that being said, My parents do not think that I am grateful for their multitude of perceived ungratefulness has brought up several dis pleasures in their household. The main catalyst is that for several years growing up while running the acronym gamut of diagnoses as a child, most of the attention of my parents was given on myself. As such relationships not only between my parents and my sister and my parents had struggles at one point or another because so much attention was paid on me. Even after being diagnosed, for some years until early adulthood, no one totally understood the whole Asperger’s thing and alot of times in a rural area such as ours, they didn’t have a clue that it related even to Autism.

Nonetheless, as I somewhat matured over the years in my adolescence and my adulthood. I had several professionals, including my psychotherapist who I continue to have today since shortly being diagnosed continue to press the issue that I had a sense of entitlement. I continued for several years until I hit rock bottom a few weeks ago had a real grip of what that was and how it effects others. I seen it play out in several professional and personal relationships when I didn’t get what I wanted I would and still do to a point manifest a “poor me” attitude by driving negative thoughts in myself and acting it out on others oftentimes my parents. More recently it has with a culprit of a stay at home order has brought the need to fix one of my few remaining flaws.

Now to my parents, as many autistics have difficulty expressing feelings to to others is often the case. With me, if the moment strikes right, It will manifest itself in a proper fashion. For example, One night earlier this week before retiring for bed, I bantered out at my mother “I hate you!” She asked my why I would say something like that out of the blue. I simply did not know. She reacted by saying that in the 60 some years her parents were alive, she had never said that to her own parents. And I admired her parents (my grandparents) A LOT! They took my defense and I think they worried about me more than my parents did. She also asked what if she didn’t wake up in her sleep that night, how would I feel?

As I got into bed that night, I had some difficulty sleeping as it comes and goes. However, later I would burst into tears wondering WHAT IF, something happens to her?, WHAT IF that was the last word?, HOW WOULD I move on? Anyway, the next morning, I had a telehealth session with my therapist, which I do like under the circumstances (I’ll discuss this in a later post.) The situation and I would break out in tears. Also, before that appointment, my father had asked me for his assistance later that day, something I always have disliked. We talked about that like the two or three weeks before about making sacrifices for our family, friends and close ones and even if we don’t like it how rewarding it can be to ourselves as well as make them feel good too. Anyway this week I committed to making that change. Unfortunately, it would take some time to prove my thoughts because it would rain and those plans would change.

So we fast forward to 8 hours ago when I got up. It was one of those nights of having a watch party on Facebook, meaning I would get to sleep late. As I got up, the landline phone in the house would ring. As its never a human being, I would learn that my father would require my assistance. Just getting out of bed, I would be a little grumpy, but I would learn to move on and do as he would ask. As I was doing this very simple task (manning a farm gate), I would see some awes of nature that I deeply regretted having my camera for the “Kodak Moments”

Returning to the house, I felt the need to wash my bedclothes without prompts (a first), then as I would put them into the washer for them to run its cycle and upon completion of it. I would discover a load of bath towels that my parents would have placed in the dryer. Normally, I would have pulled them out of the dryer and walked away after doing what I would need to do (thinking about myself). However, I would not only take them out AND fold the towels (the way my parents taught me at a very young age), BUT I would carry them to the linen closet and put them away. I was proud and my parents were proud.

See, listening in therapy pays off and using those skills even more.

Portrayal, Have we got to what dating in autism REALLY is?

Note, this article contains a spoiler from this weeks episode of The Good Doctor. While I have made commentary about media portrayals in the past, I felt this was necessary because of the relationship factors autistic people face.

Dustin

Last night, I shared a story on The Mighty regarding a review of a Love scene by Dr. Kerry Magro, a speaker on Autism who is on the spectrum himself. In summary, Shaun’s girlfriend states that their relationship will never work. He asks is it because of his autism, she cannot come to herself to an answer. I have embedded a scene below for your viewing pleasure.

Even though Lea (his girlfriend) is entitled to her reaction if she felt she was being pushed by Shaun, to me, her explanation — “You are autistic. You can’t fix that” — came off harshly. There are people in the world, like myself, who are on the autism spectrum and are not organized like Shaun is. If you’ve met one person with autism, you’ve met one person with autism. A diagnosis should not be the reason someone says no to a person for a date. There should be specific reasons why someone says no whether it be organization, no spark, etc.

Dr. Magro is worried that some of the people he mentors will believe they’ll have fewer dating opportunities because of this scene. Additionally, he worries they’ll believe any potential partner might steer away from them because they are on the spectrum. As a community, we should be advocating for finding the right person when it comes to dating. It’s possible to find someone who accepts you just as you are.

With that being said, I must stress that we as advocates for whoever we may be advocating for must be tolerant, accepting of who one on the spectrum wishes to be partnered with. I myself dislike the simple fact that film and TV portray relationships as solely heterosexual. There is a plethora of knowledge that is proven in the online world that this is simply not true.

Mainstream media has a generalization portrayal of what a relationship in not only the autism community, but the overall disability community that it is of the standard nature. I do understand that several are in denial about this fact, however in my opinion, you will never know what that person identifies as unless you have that serious conversation.

That conversation may be difficult and cumbersome to have, but relationships are as well. They are not easy for the general populace to start, let alone one with other factors such as a physical, cognitive, mental, intellectual disability. If we truly care about what an individual wants to have the perfect relationship, if they say what they feel (even though it may be diffucult to accept) we must be willing to accept it and assure that the persons have the tools at their disposal to become successful in what they identify as.

Also as those in the autism community must first and foremost in any relationship make aware what consent is to the autistic person and try in their terms to make sure they comprehend that it is very important to know what they are able to know the power of it.

Many say to a person that they are entitled to be who they want to be, but we as advocates and those who love them must be willing to accept the fact that that may not be either what we want it to be or what it is is not normal. A autistic person wants to be happy, just like you and not have hard feelings because it is not wrong. An person on the autism spectrum has a whole other set of issues, they just want to have some sort of happiness in their life, don’t let them down