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skibum
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16 Jun 2018, 6:55 pm

EzraS wrote:
skibum wrote:
I think in my case, I have other issues that make me degenerative in ways. But I am also discovering that I am probably more severely Autistic than I remember being as a kid, only because my stresses are so much more now. We are always as Autistic as our most severe moments are, it's just that if we are not stressed, it does not always show.

Also things like executive dysfunction might be dormant and then start getting bad.
that makes a lot of sense.


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kraftiekortie
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16 Jun 2018, 6:56 pm

If one doesn’t actively seek to attend to one’s autism, one will likely seem like he/she is getting “worse.”

If Ezra, say, stopped doing his treatments and just gives up, his autism will get worse.

If one doesn’t use one’s “social muscles,” those “muscles” become atrophied.



EzraS
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16 Jun 2018, 7:23 pm

I don't have treatments so to speak. Just have had occupational therapy. Most of which was related to growth and development.



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16 Jun 2018, 7:30 pm

Occupational therapy is both progressive (you make progress with it) and preventative (it prevents you from losing what you’ve gained). It’s not medical “treatment”—but it is an intervention. It doesn’t “treat” the autism directly.....but it treats your motor dyspraxia, and assists you in other ways. The effect is to make the autism better, it seems to me. Without it, it might get worse.

I consider going to a psychotherapist an indirect or direct type of “treatment.”



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16 Jun 2018, 7:47 pm

For me, my anxiety got a ton worse, affecting everything. Especially my executive functioning.

my body grew and I've had to adjust to many things both motor wise and navigating public. I don't know if I could manage without Asher.

When I get hormonal things get wacky, and that happens a lot. Sometimes the color red starts making a freaking noise. Regardless My SPD gets terrible, and my emotions go all over the place.

I keep getting hit with the reality that I cannot quite keep up. What is expected of me socially, independence and academic (Mostly math, I'm still exceptional at history and am starting to become a good writer, along with being one of the best artists in my school. It's looking like I'll need to take an extra year) wise is more than I can do now, even working super hard.

Major life changes keep happening, and I have had a few new issues pop up, like my tremors, along with back and joint pain.

For some reason right at puberty I started having a lot more speech issues than I used to. I always had trouble learning new languages, hence my steady Fs in Spanish as a kid, though I had no speech delay, but I go mute a lot easier than I used to. Though I'm still considered highly articulate by most people unless I'm stressed.

It's not a massive difference, but I for sure don't fit snugly into level one anymore.

So, more expectations, anxiety and hormones I think are the main things.


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skibum
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16 Jun 2018, 8:30 pm

I have never had any treatments or interventions of any kind. The OT I have now was ordered because I have a separate issue with is a physical disability which I have had since I was a toddler and it affects my eye tracking so we are working on making my eye tracking better. But I have never had any kind of interventions because of my Autism issues. I only got diagnosed with Autism less than 4 years ago and I am 51. Even after my diagnosis I have not had any kind of interventions. But I have spent my entire life developing my own coping mechanisms to survive so I guess that is like exercising my social muscles in a sense. If they tried to change me now, it might be very difficult.


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16 Jun 2018, 8:35 pm

skibum wrote:
I have never had any treatments or interventions of any kind. The OT I have now was ordered because I have a separate issue with is a physical disability which I have had since I was a toddler and it affects my eye tracking so we are working on making my eye tracking better. But I have never had any kind of interventions because of my Autism issues. I only got diagnosed with Autism less than 4 years ago and I am 51. Even after my diagnosis I have not had any kind of interventions. But I have spent my entire life developing my own coping mechanisms to survive so I guess that is like exercising my social muscles in a sense. If they tried to change me now, it might be very difficult.


I currently go to an autism specialist therapist, that I have been going to since I was diagnosed at ten.

I did OT for a few years, until the hospital changed management and put a cap on how long you can do it. For dyspraxia and the SPD mostly.

I've done hippotherapy (Basically OT on horse back)


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Diagnosed autistic level 2, ODD, anxiety, dyspraxic, essential tremors, depression (Doubted), CAPD, hyper mobility syndrome
Suspected; PTSD (Treated, as my counselor did notice), possible PCOS, PMDD, Learning disabilities (Sure of it, unknown what they are), possibly something wrong with immune system (Sick about as much as I'm not) Possible EDS- hyper mobility type (Will be getting tested, suggested by doctor) dysautonomia


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17 Jun 2018, 5:04 am

skibum wrote:
Does anyone know if there are any people who start out as level one and end up level two over time?


I feel I'm an example of this, mostly because of changes in my support structure. I was weird and awkward as a kid, but I got by okay with rare meltdowns, good grades and a few friends. It was easier because my parents took care of everything and there were fewer things I had to be concerned with. They also reminded me to do things like shower and eat, because I wouldn't remember to do it without prompting.

Now, living on my own and trying to contend with the day to day life of adulthood, I'm struggling. My meltdowns are now on a monthly basis, and I've had paramedics called five times and been hospitalized three times because of them (once physically, twice psychiatrically). I don't have the organization or executive functioning skills to grocery shop or cook, so my sister has to go shopping with me and I buy things that I can make in the microwave or which don't require cooking. I don't know how to clean a home or when certain things need cleaning, and I shower about once every five to seven days. I absolutely need more support than I'm getting, but I don't know where to look for it.


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Arevelion
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17 Jun 2018, 6:44 am

skibum wrote:
Arevelion wrote:
Who is supposed to tell us what level we're at anyways? No one told me what level I was at when I was diagnosed.
Were you diagnosed before 2013?


I forget if I was diagnosed in the year 2000 or 2001

StarTrekker wrote:

....Now, living on my own and trying to contend with the day to day life of adulthood, I'm struggling. My meltdowns are now on a monthly basis, and I've had paramedics called five times and been hospitalized three times because of them (once physically, twice psychiatrically). I don't have the organization or executive functioning skills to grocery shop or cook, so my sister has to go shopping with me and I buy things that I can make in the microwave or which don't require cooking. I don't know how to clean a home or when certain things need cleaning, and I shower about once every five to seven days. I absolutely need more support than I'm getting, but I don't know where to look for it.


(Tries to rest a hand on your shoulder) Sympathy via physical contact.



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17 Jun 2018, 9:42 am

Arevelian, you were diagnosed before they started using the numbers system to identify severity levels. That is why you were not given a severity number with your diagnosis. In the early 2000's you would have either gotten an Autism diagnosis or a diagnosis of Asperger's Syndrome. Asperger's would have been what is now considered ASD level 1. I believe they might have already been using the HFA diagnosis then as well but I am not sure. But that is why your don't have a severity number.


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skibum
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17 Jun 2018, 10:06 am

StarTrekker, I can totally relate. I was actually a very independent child but and I could make simple things to eat like cereal and sandwiches and I could take my own showers, brush my teeth and dress myself from a very young age. I am also a bit of a germophobe and have been since I was a little kid so I self care was always a priority for me. But one a couple of things that I noticed is that some of the things that I am sensitive to especially in the area of sound did not exist when I was a kid. Certain types of music that make me have massive meltdowns and that can make me go into shock like rap music or bass heavy boom boom music and these super loud sub woofer stereos that people put in their homes and cars, were not around when I was a kid. This is a relatively new thing and it causes me significant impairment to where I can easily end up in the hospital and it can sometimes take me a very long time to recover from.

I also did not have to support myself financially when I was a kid. I also was not threatened with homelessness or starvation unless I made sure that everything I need was taken care of. I could also get away with not having social awareness because even though I have very few friends, my lack of social awareness, my emotional immaturity, and my practical intelligence capacity immaturity levels did not get me kicked out of school. But they regularly get me fired from jobs. I was also constantly moving to other states or to other countries because of my dad's job so if things did not work out socially, it wasn't that bad because I could always start fresh in a new place where no one at school knew me. And once they got to know me, and once they saw how weird I was, the kids would not want to play with me or associate with me but in a year or two I would be gone anyway. And I did not have to be so conversationally savvy because if I messed up in conversations, it did not matter.

But now things are very different. There are so many more sensory things now than there were when I was a kid. Now I have to be socially and conversationally savvy because if I make mistakes, now that I have to be responsible for every thing in my own life, those mistakes could cost me dearly. I was left in my food stamps interview by myself because my counselor had to leave. I answered the questions incorrectly because I did not fully understand what they were asking. It cost a big delay in my food stamps until we could get it all straightened out. I am constantly misunderstanding what my bosses say at work and they are constantly misunderstanding me. These errors can easily get me fired. And the more I lose jobs, the harder it is to find another. Also my skills deteriorate when I am under pressure. The pressure of maintaining my life and my house by myself is too much. And I can't get help because help is all or nothing. I have contacted numerous agencies that provide support to Autistic people and all of them require me to be much more low functioning to receive their services. And their services are not they types or supports that I need. So even though I am begging for the kind of support that I need, it is impossible for me to get because I can only get the supports that people want me to need, not what I actually need. And what I actually need, they refuse me because they say that I am too high functioning to get.

I also get much more social bullying now as an adult than I ever got as a kid because my parents and moving all the time kept me pretty sheltered.

And I suffered a massive Autistic burnout three years ago and an unimaginable emotional trauma two years ago and those things permanently crippled me and have made me much more susceptible to everything.

So I think that is why I am getting worse.


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17 Jun 2018, 10:16 am

Skibum, your experiences are helping me understand a lot. Grateful you are here.



skibum
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17 Jun 2018, 10:25 am

HistoryGal wrote:
Skibum, your experiences are helping me understand a lot. Grateful you are here.
That is so cool HistoryGal. I love when my struggles and joys can help other people it. It makes the struggles worth it. I am so happy to be able to help you my friend. I am so glad you are here as well. And thank you for being such a support to me. :heart:


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17 Jun 2018, 10:45 am

Speaking of moving around.....my parents thought that moving into town out of the unincorporated hills to a new school would be a good change....nope same problems.....



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17 Jun 2018, 11:20 am

HistoryGal wrote:
Speaking of moving around.....my parents thought that moving into town out of the unincorporated hills to a new school would be a good change....nope same problems.....


I went to three different elementary schools in two different states. I was bullied mercilessly at each one.



skibum
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18 Jun 2018, 6:41 pm

HistoryGal wrote:
Speaking of moving around.....my parents thought that moving into town out of the unincorporated hills to a new school would be a good change....nope same problems.....
I think it was different for me though because I started moving regularly as an infant. Until I was in college the most I ever spent in one place was four years. I never knew what it was like to live in one place or one house for longer than that when I was growing up. I knew my cousins did because whenever we visited them they were in the same house but I never really made the association. The first time I understood the concept of living in one place for a long time was when I was in the sixth grade. A girl on the playground told me that she was born in the house she still lived in. I had no concept of what that meant. Growing up as a military child, everyone I knew moved all the time. And every few years when we saw my cousins. it never occurred to me to make the connection that people could live in one house for a long time. So I think because I never had a chance to settle in as a child, I was always starting from scratch socially. I think that really helped me in a way because I have really good first contact social skills. I just can't retain relationships.

I also learned from a super young age, how to "hide" my true self and how to mimic the people around me. I think that kept me from being bullied too much. I was more bullied by my biological siblings than by kids at school. At school, once they realized I was different, I was just pretty much abandoned by the other kids.


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