To drink or not to drink, often I don’t think of water. Another multi-doctor session via air ways to protect our air passages from passing infections. Lesson learned that once again adults on the spectrum often are undiagnosed due to lack of testing. The grapevine shakes with juicy news of new tests in the field that are being grown. Here’s my acceptance letter to assist from afar, offering the proper inquiry necessary to prevent accidental misses of adults who articulate early. First, I don’t feel thirst. This anomaly indicates perhaps pituitary dysfunction which shakes hands with this thyroid who needs a steroid to balance. Not actually a steroid but to keep the integrity of the scheme that places words in one act plays. Syndromic Autism or as it is on my file, ASD with a specific specifier having a genetic cause. Next stage is to zone in on this torrential waterfall a take a sip. It’s all about the perspective. The daunting dance of the psyche has finally concluded. Now we can begin again with a direction that the entire team is satisfied with. Now for the neurologist or genetic specialist to assist in naming the physical claim that has caused damage to this brain. However, not for some time as the wear of this strain is still draining like a snow cap in the summer. So, adults with Autism I salute you. Especially those who didn’t know until you were adults. All sides of the spectrum I wish you the best. I guess this is where I drink from the sink with a tank to think of all those struggling with something unnamed. As with mental disorders this genetic malfunction has been named, claimed, and then rejected all the same. To wit, out of 5 doctors (none specialists) 3 proclaimed Marfans syndrome while 2 others nodded in another way. So strange that genetics can spring forth with so much ambiguity. The good news is, that knowing this perfect label for the genetic syndrome pales in comparison to just knowing why I don’t fit. Sure, I wish to know. Soon I will obsess to find out. However, the ultimate question has been quenched. The water of the unknown psychological issue has been agreed upon and formally written in the file. Self advocacy was definitely necessary. So I feel for those with perhaps less energy or ability to shine lights where darkness looms. For those who wish to speak up but not know what to say. Not to mention, the other co-morbid issues have not gone away. Especially this OCD which is 17 times more likely in the likes of me. 75% of the spectrum moves with a mood disorder which may trump all other diagnosis in terms of order. Hence the reason so many can mask so long without detection. Anxiety…well…sure. IBD most likely due to the conflict of constant tension in the living situation called this body. Fortunately, I don’t still have the temper tantrums that I used to display when play didn’t go my way. Next phase is the sensory processing issues. That deserves an entire post as the senseless senses played immature games with my consciousness constantly. Just a touch of sugar in my drink and I sink. Just a single degree change of temp and I fall limp from the heat. Now he is sweating but I need a cover. Now the shower is too hot so why bother. The sounds, the sounds just keep sounding the alarm harming the already radiating headache. That was just this morning. The good news is, I know why and that really makes a big difference. Due to the years of research and doctors visits, I may have been the first person ever to hear… “congratulations, you have Autism” and fight back tears of joy. I realize now what I wish I knew then, it’s all about perspective. Time now for me to take a drink from the falls, not because I feel thirsty, but because I can.
Change is a must when not to change is the enemy of better days. Yesterday stares at the future wondering what could be. What should be. Trust that the process out of this mess is, as far as I can guess, truly necessary. It’s scary how many are growing stagnant. Older but not wiser but any means. The seasons seem to predict that constant effects are needed to promote new causes. Just because I feel safe in misery does not mean the risk outweighs the means. The committee speaks in community forums about scores of individuals on disability doing nothing. Nothing! Truly the process to help process this mess is better than this. Seriously! No, I am just being facetious but with a word full of tongue in cheek. Let’s speak as those who are in the know. We know that yesterday is not gone. We know tomorrow is already here. We know that if anyone is reluctant to change that it is all the same. I can predict the future. It looks just like yesterday without any change.
Off to a mountain type rocky start to the finish of a play. Playing with vibrations that transport swifter than an all terrain vehicle. Getting back to normal is a fallacy for the insecurities of fall leaves that ride the winds. They never see the tree again from the same view, only a few may stay awake long enough to notice anyways. Why are such unmoving, but living to give by the sea type trees so bountiful? They seem to play every time a breeze visits. So stable. So able to just be. Alive and unmotivated to move beyond what the roots authorize. No surprise that they last past the blast of the winds. This tree that my little i does see has been around to see more than me. Perchance, just a glance and he has seen those who made me and escorted me into the scene to breathe. Same chance that once only this type survives, a time when this very tree will see those who read from me. Those from eternity that earth is yet to see. The deer pants and does a dance for the fall of minds. Hunted like a prey. Sought after like for play. Life and death in the tip of the arrow. Buckets of bullets pierced the winds, vibrating the leaves as the tree shook with pain, while the watcher took aim. Cheers! Another death. Someone earned a trophy for the wall case. More leaves fell. The water grew silent in view of the violent vibration of blood on the ground seeping towards the roots of the trees. Tonight we eat. Tonight we sleep. We sleep with the leaves that fell last fall. We eat with the deer that fell last night. We dream of the trees that witnessed the blood. Let me be like a tree. Let me be like a deer. Let my mind rest from the vibrant run of the vehicle that crosses all terrains.
The new science of Neuroscience detected from the university a pleasant plethora of diversity in my genetic code. Just some. “When is some better than full?” they asked with a keen grin of a friend. “When it follows Awe!” It took so much restraint not to be exceedingly angry that I was dizzy and felt faint. I presume from experience that most would have cordially gave an audible smile for such clever clerics from the worlds most elite minds. I was definitely devastated that such men in white armor would assume my sense of humor to be only slightly better than a preschooler. All I could reason is how “full” is not even the proper spelling of the horrendous attempt at wit. Be that as it may, I still found time to play around on the playground of my own awe inspiring thoughts. Today I am a neurodiverse man of a thousand thought experiments between a rocky psychiatrist and a hardened by life psychologist. They are wonderful. Wouldn’t trade either for the other. Great to have a team of trained sane neurotypical agents of change on the dream team. So much to say that always gets forgotten at the time of thought exchange. Time to rearrange the thinking to keep from sinking into comorbid mixed emotions and I keep forgetting something. What is it? How will I know if I remember it? OCD is a memento to the memory of mental metal rituals that flooded the syndrome of synapses. Only to find out that not one single computer like compulsion would ever emerge. Just a simple splurge for a blanket that I had to get every generation. From couch cover as a kid to college bed spread, it was the new version of the same feel. Still almost 40 years later, I still twist the ends of similar but newer versions of the same security quilt that I have felt for decades. No! Not a compulsion, but a relaxation of fixed energy programmed to enter into new dimensions of time and space through my blanket. I mean I like how it feels. It is a real calming effect, like coffee that I can’t drink. It’s a real calming cause, like hot steam that I hate feeling. It’s a real calming trap, like a run in the park after dark with shadows dancing near the perimeter outside of my peripheral. It just feels good to me. No reason. No comparison completely. It’s my blanky and I am almost 50, nuerodiversity maybe, Shhh!
Had my psychology appointment last week. Just when I thought it was safe to get back into the writing…a wrench was tossed. A new study was launched. New doors were opened. New answers to old problems and just maybe a few more initials to add to the seemingly ever growing list of issues. Most recent Autism Spectrum Disorder.
I was always on a pursuit to see if all the underlying issues were somehow magically connected. No sooner did I give that up and blog about acceptance of the Bipolar did this arise. Was she just waiting in disguise for my surprise acceptance to issue the next challenge? Perhaps! So I was tasked to research, as she knows I will anyway, to make the connect. Here are some recent but astonishing findings.
I have historically been diagnosed with Marfans Syndrome, which is a connective tissue disease. I also deal constantly with IBS and acid reflux. I also have severe anxiety issues that present all across the anxiety spectrum from somatic issues to panic attacks and everything in between. Still not enough, add Bipolar 1 and PTSD from a host of abnormal life twists and events. So what is the connection? Maybe Autism.
I know, right? But…how could this have been missed? Isn’t autistic behavior seen at a young age? In fact, I am quite certain that you have to be diagnosed before age 2 or 3 for most, not 50!
Come to find out, with still so much research to do, that “syndromic” Autism can be found much later in life. With 50% of the cases being what I will call “classic” Autism, that is to say, Autism as I read it in the DSM 5, there is another 10% with genetic factors. These genetic factors or the syndromic Autism is my new field of study. Obviously not much out there, and seemingly even less consensus. Much like the C-PTSD, which is not in the DSM but still readily spoken about by professionals on blogs and posts.
Now what? If it is true, I have a long awaited answer that connects ALL of the small mysterious dots. If not, I continue to explore and just be abnormal with one less label.
Interesting fact, at least to me, is that so much of my research kept ending up on Autism Spectrum sites. I study Anxiety and end up there. I study IBS and end up there. The kicker was searching for more info on Marfans syndrome and yet again end up there. Thanks to an article, that I need to find again, which showed the results of a study for Ehlers-Danlos syndrome and it’s connection with autistic symptomatology. Ehlers-Danlos is a connective tissue disorder similar but different than to Marfans syndrome. Similar in the connective tissue disease but different in presentation. All of that said, I have a few questions.
1) Is the genetic presentation of autistic symptoms still considered to be on the Autism spectrum or as a symptom pattern of the underlying genetic disease?
2) Is high functioning Autism a reality or just spoken of like C-PTSD?
3) What is the treatment plan for such a mixture of madness?
4) Is social awkwardness and language deficiency a must or merely part of a whole that may or may not be present?
5) Is it better to ask five questions when four was sufficient?
SSI should adopt a better model for communication. To send out threatening letters to unsuspecting and disabled people can not be the best way to get in touch. Who wants to open a letter, after doing nothing wrong, only to find that the funds may be cut if…Why not just send a friendly letter that explains things first? For example…
“Salutations valued recipient, we are writing to update our files and would enjoy speaking with you on …at … in the afternoon. Thanks for making time to help us help you. The information we will cover is as follows…The call will take less than 15 minutes and is necessary for us to ensure some details. This is a routine update and everyone will have an appointment at some time.”
Obviously I was being moderately sarcastic but the point remains, just ask! Threats are unnecessary and puts people on defense before the offense even happens. Perhaps their blanket threat letter can be used for those who missed calls or appointments as a last ditch effort. Knowing the blogs that I have read, no one wants to be threatened every time info is needed. Positive reinforcement still works. Many people on disability have anxiety disorders and those letters can cause a worsening of symptoms. Those fighting depression can fall deeper in that abyss of darkness at the smallest thing. Something like all of your income will be cut if….
Not professional at all SSI. We expect better. As a bit of advice, perhaps hire people persons for jobs that deal with people. Perhaps train people that they are talking to people who may be hanging onto life, so yelling and arguing about numbers, and demanding clear and concise thinking on call, is just not always possible. If it was, we would not be considered disabled. SSI remember the mission, of you have one. If not, I suggest something about helping people rather than saving pennies! Create another letter that doesn’t threaten people. Just ask, that’s what I am doing now. Just asking.
Out of Sound Mind 