The Blue Bucket

So, last year (2018) a few of us in the autistic community encountered the following image claiming that carrying a blue pumpkin for trick-or-treating signified that the person was autistic:

However, in a world and especially an area where MANY individuals are ostracized for having a disability by the general community because of trying to play the disability card makes me so darn mad because individuals such as myself don’t like to put my condition out there unless I have a good “vibe” to do so.

Yes, going trick-or-treating is a family past-time, however just going with a blue pumpkin in my opinion would marginalize their condition out there to an already generally populace that already marginalizes individuals for their limitations or behaviors that they already critize.

It’s just like putting a visual target on track making that condition that you work so hard to not bring to light to those that critize out there for all the world to see. There are ways to signify “Trick or Treat” for individals that are unable to verbalize that, just be creative.

Lastly, someting I want to touch on is that if the person has “the body of a 21-year-old” and “appears to be an adult”. No, they ARE a 21-year-old and they ARE an adult. This is incredibly infantilising language and implies their body and brain are completely separate entities. We have to remember that while accomodating what the person enjoys, that safety must be considered and that we must understand that maturity comes into play and that both must be regulated with finesse.

If someone is 13, or 21, or 35 or whatever, just say that. If you absolutely have to disclose their age at all! DO NOT say they “have the body of a [fill in age]-year-old”, and CERTAINLY DO NOT say that they have “the mind of a child” or any variant. It’s patronising, condescending, infantilising and completely inappropriate.

The simple fact is that Trick-Or Treating is for EVERYONE, and although I didn’t get my Autism Diagnosis until I was 13, granted it was years later that I became confident to say “trick or treat” to strangers, I didn’t carry a blue pumpkin, I was “just another one of the kids” and I trick or treated until I was 10 becaus I really don’t like halloween

In closing, this is yet another way of “putting the Autism community out there” in a very stereotyping and marginalized way.

 

 

Reflections of a Meltdown

Note: Adapted from the article from the Aspergian and related to my last meltdown

It wasn’t a bad day, in fact it was pretty good. I had worked out earlier in the day and it stormed in the morning, later I would learn that my parents had issues with their broadband service.

They had called our provider, who by far is the best in the region. They came out and had seemed to repair the issue. Later, we discovered that the Internet was not working after my mother was told that she needed a new router.

In the process of reconnecting, we discovered this and as such had to call the broadband provider again, which they are very nice. After troubleshooting, which when they are over 100 miles away they do their best given all the advances in technology a small provider has, although because of one thing or another we were not having success.

But lo and behold, they put it on and I started getting irrate. I couldn’t even feel it coming on.  I was cursing, I was stomping around slamming doors. I said irrational things like “I needed to cancel all my serice (although I don’t live with my parents) and that the person on the phone needs to “pay.”

Of course they scheduled a service call, but the damage had already been done.  I was crying, cursing, screaming…  I was having what many autistic people described as a meltdown.

After the fact, I could reflect a little more about why that event was so triggering.  Because I had mentioned the “Time Tunnel”  and then being told it isnt true, I was continuing to be mad, however I spent the rest of our visit telling the truth about the past year.

Merriam Webster’s dictionary defines a meltdown as a breakdown from fatigue or overstimulation.  It’s a good starting place to describe what exactly is happening.  The Interactive Autism Network describes a meltdown as an “instability.”

Think of it like this: you’re working with a computer, and you’re giving it too many commands at once.  What does the computer do?

At first, it kind of shuts down.  It doesn’t respond to any of the input that you’re sending to it.  But then something interesting happens: everything starts flashing, windows start opening and closing all at once, maybe keyboard strokes from moments ago start appearing on the screen.

You can say the computer has reached an instability and is responding as best it can to all of the input that it has received.  That’s kind of what it is like in the autistic mind when a meltdown occurs.  The whole system– not just the brain– becomes overwhelmed.  This can happen for many reasons; for instance, in my situation last week, it happened because I had the best intentions and had planned something to happen.  What actually happened was totally contrary to what I expected…  thus: meltdown.

It can be very difficult for neurotypical people to understand exactly what’s going on during a meltdown.  They can also be difficult to describe as every autistic person experiences meltdowns slightly differently.

When I feel one coming, it’s like mental pressure building, my movements become more agitated and jerky.

CIRCUITRY OVERLOAD

The fact is, meltdowns are not something that we choose to do.  These aren’t just emotional reactions to not getting our way.  They’re not tantrums, not even in children.  They are very much an overloading of our mental circuity.

What is the way forward?  What is the best way to deal with meltdowns?  It’s all about putting more tools in your tool chest.  Knowing your own personal signs and triggers, knowing what it feels like before having a meltdown, will help you be able to prevent them.

If you’re autistic, you need to know it’s okay to to set healthy boundaries for your loved ones by making it clear that you might need to wear ear plugs or sun glasses, stim to help regulate your nervous system, decline some invitations, or take social breaks during events.

If you are a loved one of someone who is autistic, be gentle and kind while the person is having a meltdown and after.  Often, they need space.  When the person is calm and having a good day would be a good time to talk about how you can best support them when they feel meltdowns coming on, during a meltdown, and afterwards.

Also I think that practicing radical acceptance is key–not only for autistic loved ones, but for those of us on the spectrum, as well.  I am autistic and just as much as my ability to pay attention to details is a part of who I am, meltdowns are also a part of who I am.  I can get better at avoiding them, but overwhelm will still happen.

It doesn’t make me a bad person, it just makes me autistic.  I tend to be a spiritual person, so I see myself exactly as God planned me to be.  Learning how to accept and embrace my autistic self– that is my life’s goal.

Teens’ Autonomy – A decision I took to advantage at that age that bites me today!

Note: The featured photo is my 8th Grade School photo, taken a few months before the behavioral health symptoms took me down the path of my recovery journey, I saw this linked to an Autism Adovacy blog ant thought the need to reference my story on that road two decades ago.

Before a recent law in Washington State, Adolescents age 13 and older were generally entitled to make their own decisions about their need for mental health services and to decide whether to allow their parents to be given any details about their condition, diagnosis or treatment. Pennsylvania has a similar law on the books, however the age is 14 years of age.

14 years of age is the magic number of legal decision in Pennsylvania. 20 years ago, I began showing my puberty and sytmptoms of needing care.

Starting in November 1999 and lasting until August 2000, I was hospitalized five times before being placed into residential treatment for a nine month period.

20 years ago, it was a normal day, another day of acting out at school to come home to yet another day of wraparoud. I had been acting out for a few hours, as such, I was mobile crisis was alerted and I was triaged at the local emergency room beore landign a bed in a locally renowned specialty psychiatric hospital over an hour away from my home.

Once there and begining the admission process, I leard because I was 14, that I was at the magic age of consenting to “whatever I felt fit about my treatment”

Think about it, you can’t make any other legal decisons at that age, however in the mental health community, when you are sheltered in at the moment, you have the right to do whatever you please.

At times, I used this to my advantage, and I have to admit it wasn’t pretty.

One time in particular, when I was on my sprees, I had the bright idea to sign myself out of the hospital, still to this day almost 20 years later, I don’t know why, but I wish I could tell that 15 year old to think twice.

For it cost me (and my parents) years of heartache, mentally, physically,  and financially.

In that instant that I got the bug up my rear to sign myself out, my father, who was working at the time, dropped everything on a dime and drove the hour and a half to pick me up from the hospital.

Think about it, I could have roamed the neighborhoods of that hospital or make a very dangerous decision.

As such, my parents took severe, costly legal protections to secure my individual freedoms, something 19 years later I often think about.

With the reecent relapses, I think, do I make the right decisons for what I know?

The truth is when I am medicated, I am the pleasant, loving, Dustin that everyone wants to be around

When I forget excessive doses of my medication I am the Dustin that people worry about.

Thats why, I now know the importance of following a medication regimen because it is what I have worked so darn hard to get on to feel to be the one loving person everyone loves so dearly.

As I started becoming myself recently, I informed my mother of that roller coaster ride, and she said these starch, stern words to me as I was getting out of her car to go home one night.

“If you do not take your medicine, I will not talk to you.”

This coming from the parent who oftentimes manipulates her needs and resources to do whatever I may need and oftentimes want, really brought not only what I was doing the past year, but when I was experiencing symptioms 0 years ago into perspective and that I should have followed orders, and that if I did, my family wouldnt have had to incur into the investment that thet did.

And fot that I truly apologize and take responsibility, because I just was not healthy, and knowing that the medication cocktail was the one that kept me well over the past two decades was the one.

However, crossing that line and brushing that line by relapsing wasn’t the smartest idea, but I felt I needed to know.

Now I know, and I don’t plan on going back down that road that I was on the last 10 months. I am returning to the normal self that everybody loves and I am also fighting for my individuality, and I know that I have to clean up the past and make amends with it, and that too is a teatous process and it must be done and I feel certain that I am in the mind to do so.

 

Symptoms of Autism, mixed with symptoms Bipolar and the whole working thing

Recently, I came across an article on the website The Mighty about behaviors at work while experiencing symptoms of bipolar disorder. Myself having Bipolar for over 20 years, and now at this time accepting it more thought I should share my thoughts on thiis article as it relates to my recent weeks at work.

As many of my followers know, the past 9 of 10 months have been sort of a rebellious time for me while attempting to find my true self, I had the brilliant idea that I didn’t need certain medication. I had the assumption for several years because I have been taking them for decades that they wern’t needed as my behaviors were no longer present two decades later. I was wrong, however I have also learned that I needed to have that time to test the waters to see if that theory was valid.

The truth is. The professionals knew then and they still know now!

While I never took notice over those past eight months that I now realize was a steady decline in my mental health, About six years ago, my therapist of several years had seen me ride that roller coaster over the past 8 or so months, so she knew that I needed to medicate because first and foremost she knew me and secondly she had listened to me say that I was slowly being stripped of my responsibilities little by little.

And the truth hurt that it was because over that past eight or so months I have became less and less dependent.

Just prior to that session, my coworkers have seen the decline over time and moreso of over the month prior to the discovery, as such my schedule was reduced and discussions were occuring about my work capabilities. Thankfully, I have a very accomodating employer and thank the powers above every day for that. As such, the schedule was reduced to two days and still is, not only because of my behavior, but because of the multitude of changes over the past year and the additonal services and supports that I participate in this was necessary to balance the workload. Thankfully this time of year the majority of the workload keeps us in the office and occasionally in the field, therefore two months in it seems to be doing great.

Also, I know that Autism and Bipolar are two very different conditions, however oftentimes we must remember that Autism is not a mental disorder, its just classified as such, so there are several individuals with Autism that have other diagnosises in all spectrums of behavioral health, not just mental or developmental. Therefore I feel its important to discuss the severity my symptoms of Bipolar as blended in with Autism and other traits that by not taking your prescribed medications can be very dangerous to the point that several indivuals on the spectrum who do not have the right coctail do not succeed well in life and are unable to hold down a job or stay in higher learning. I am to say that I am under six months to go for my tenth anniversary of my employment.

A few weeks after restarting the regimen, co-workers and supervisors and others at the day program I have been involved in over the years have seen a change. Some of the staff at the day program noticed the day after I started medicating regularly again have seen me on the roller coaster and monitored my closely. At the day program, just a week later, we went on an outing and they said the change was like night and day and they were proud to have the “old” Dustin back. Likewise, earlier that same week, my supervisor was in the field with me she had seen the “old” me returning to myself.

With that being said, I must stress how important it is to take your medication on a regular basis. I will have my followers know that one of the medications that I was skipping for weeks at a time is used to treat the irritability in Asperger’s. In order to make certain that I medicate regularly, I use the app from my pharmacy to scan my pill bottles and set reminders and to refill or reorder when necessary. I keep my pills and planners to make sure that I take them (and have a dedicated reminder on Saturday night to fill that container.) Also, since I live on my own, in the bathroom, I mark on the calendar the time I medicate, because oftentimes I do so at home and I also keep track of the fact that I shower because I also struggle in doing this, nonetheless it has improved greatly.

Lastly, anyone who has a mental health conditon and is employed (especially in the community,) should take time and complete a Wellness Recovery Action Plan which is a self-designed prevention and wellness process that anyone can use to get well, stay well and make their life the way they want it to be. It was developed in 1997 by a group of people who were searching for ways to overcome their own mental health issues and move on to fulfilling their life dreams and goals.  It is now used extensively by people in all kinds of circumstances, and by health care and mental health systems all over the world to address all kinds of physical, mental health and life issues. In some states, this tool is offered digitally to its citizens through a web collaborative called Network of Care making it accessbile to all citizens of those states that provide it at no cost and its secure.