Monday, May 20, 2019

2/2/19 Happiness is measured differently

Conversation I had with a caregiver today 

Caregiver: You have 3 college degrees & have Autism? Not fair. But what is life? 

Me: i don’t think so, I don’t see my autism as a bad thing. I see my autism as a strength, I got to lead the way for several doctors to learn more about autism. I got to educate many autism specialists about autism. I get to see the world in a different light than most people. 

I have had many opportunities that people who are not autistic would not ever be able to do. 

As for my degrees, I have had many opportunities to learn more about life & be able to use the knowledge I learned from it in order to combat the system in ways that would make change. 

I have a bachelors degree in psychology, a bachelors degree in Social work & a Master’s degree in social work. I now understand the system, and I am more aware of how to make waves in the system.

Caregiver: Good for you. My 37 year old will never be able to take care of himself. He has never had a single friend. Autism is not a gift to him. Anyone can be diagnosed with autism. It’s not right. Some people should not have that diagnosis. 

Me: is he happy? Sometimes we see people’s worth simply by accomplishments as how valuable they are, how productive they can be. But isn’t the purpose to challenge ones self in order to not only grow with wisdom & strength but also for happiness? The journey we take as well as the destination is to be happy & achieve happiness in itself- otherwise, why bother? One should measure success by happiness & not by college degrees, marriage, good job & etc. Your son is nor better nor worse than me with his lack of college degrees as long as he is happy with his life & himself.

I am 29. My dad is in the military, so I grew up all over the world. I lived in Japan, Alaska, Hawaii, Germany, and quite a few different states. I was born in Texas and I have family there, so I consider that to be home. 

My biggest accomplishment has to be either my two daughters, or going back to school this past year, to work towards becoming a physical therapist. Being a mom has been incredibly rewarding. It has been hard at times, but I really wouldn’t trade it for anything. Going back to school has always been on my “to-do list,” now that my youngest daughter is in school, I have the time to do it. After spending 10 years out of school, this has been an adventure, but I know it will be worth it. 

The most obvious sign that others noticed was that I really have a difficult time with eye contact. I have tried many different things to work on it, it was actually one of the first things that my therapist worked with me on. Nothing seems to stick though. Empathy is another problem for me. Some situations are hard for me to understand how others feel, or if I am able to understand it, I can’t express it. 
Routines are HUGE for me as well, I never realized how much they affected my life until I was diagnosed. 

When I first was diagnosed I felt:
I was confused at first, I hadn’t really heard too much about it. After doing some research, it really explains so many things about me, and I am much more comfortable with it. I am still learning more about it, and how to make accommodations for some of the different things I do, instead of trying to change it. 

I was only diagnosed within the past month, so I am still learning more about the different traits and challenges and benefits. 

Growing up, I had a really difficult time making new friends. I thought it was because I moved so much, and had to start over so often. When I did make friends, I tended to have one good friend, and any other friendship was very superficial. I had no idea that wasn’t how everybody else was. As an adult, I had the same problem. Not being in school, or forced to be around people all day, made the problem more obvious. When I was at work, I had no idea to make small talk with my coworkers, so I kept to myself. 

My husband is in the military, so I still move around quite frequently. He has been in for 9 years, and we have moved to 6 different places, not including the local moves that we did while at some of the duty stations. 
The older I got, the more difficult my social anxiety became. A little over two years ago, I was at a pretty low place. We were living in Texas, while it wasn’t “home” where my family was, I LOVED the area. Despite that, the only people I knew, were my husband and my daughters. I barely left the house. I had such a hard time even going out to community events with my family. My mom recommended that I speak to somebody about my anxiety. It was then that I was told I had anxiety and depression. I wasn’t able to get in to see a psychiatrist or therapist in Texas, because we were about to move to Maryland.

After speaking with a therapist for a while, and seeing a psychiatrist to test different medications, I was diagnosed with Aspergers. While on the outside, things haven’t changed, the way I think about nearly everything, has changed completely. I approach things in a totally different way, and I make more of an effort to be kinder to myself if things don’t happen the way I intend. 

The fact that my family moved around so much, probably had a huge impact on getting a diagnosis. With clinics or hospitals on military bases, you don’t always see the same doctor for every visit. I very rarely saw any doctor more than once. It made it difficult to have any kind of follow through for anything. 
The more I moved around, the more I started to imitate my classmates mannerisms, and behaviors so that I could fit in better. I liked to be alone, I loved to read, and I had my own interests that weren’t the same as other kids my age. I was made fun of for being different. So, I behaved how I thought I was supposed to. That continued all the way through schooling, and my adult life, until I got my diagnosis recently.

I'm 36 and from the south burbs of Chicago.

I am quirky. (Or weird 💁‍♀️)
I have a strange sense of humor.
I am a bearer of random, mostly useless, medical facts.
I love true crime. Especially serial killers
I am an artist and pretend to be a photographer. 

I am hypersensitive to EVERYTHING. Sounds. Smells (I almost never breathe out of my nose as basically every smell is offensive to me. Even pleasant ones.) Touch. (No jeans ever. No tags. I can feel every seam in every piece of clothing in an almost electrical way.) Feelings. (I can feel a person's feelings when they walk into the room in an almost physical way.) 
I am awkward. Af. 
I am very very very clumsy.
I don't like change.
I don't like hugs. Or touching really, for that matter. 😬
I am anxious. 

I wait tables at a tiny Italian restaurant. I like it a lot. I have a nice little script going and I love my boss and and co-workers. 

A few days before Thanksgiving, my boss turned to me and said, "I can't believe the Holidays are here already."

I stood there thinking for like 20 seconds and finally asked, "Are they someone from your town or...?" As I thought she was talking about customers or friends with the last name Holiday. Ha.

She laughed, "No, Silly . The HOLIDAYS. Like thanksgiving...Christmas...

Facepalm. Ha. 

Not very many people know that I have Asperger's & I'd like to change my anxiety. It's debilitating. Well, my anxiety and extreme need for consistency is likely my biggest struggle. I have managed to recently get on an airplane and take a spontaneous family vacation with the help of my boss and that shows me that there is a chance of overcoming the worst parts of my anxiety which is pretty damned comforting.

Several years ago I began seeing a therapist. It was my first one in several years as I just couldn't find "the one." I liked this one. I was pregnant with my now almost 4 year old son and my anxiety was at an all-time high. At the end of the fourth session, she asked me if I had ever been diagnosed with Asperger's. I literally laughed and never went back. I was incredibly uneducated on the subject at the time. I had this very stereotypical view of Asperger's and Autism. I had zero idea of how different women with Asperger's can present. 

Fast forward 2 1/2 years. I finally found another therapist to help me with the debilitating anxiety and sensory issues. 

After our third session, she handed me the book Aspergirls and told me to read it so we could talk about it at our next session.

I read the first 50 pages that night and felt something I'd never really felt before. I could relate to the stories so hard. It was like an epiphany. 

I was formally diagnosed a few months later. 

My biggest accomplishments thus far? 
Having kids is a sensory explosion and I feel as if I am accomplishing "momming" quite well (NOT PERFECT OR EVEN CLOSE TO BEING BUT...) even though it is often very difficult. 

I wish others knew that the fact that I can make appropriate eye contact most of the time, enjoy concerts, social gatherings, and am mostly able to mask very well does not mean I cannot be on the spectrum. The spectrum is wide and as a child I learned fairly quickly how to study those around me and act accordingly as a way to cope with being unfiltered, awkward and clumsy.

All of the resources around me caters only to children and adolescents. Other than a great therapist, I have had no other resources. 
Something that does help me is CBT and exposure therapy. I have learned many breathing exercises and grounding techniques that help me with panic attacks. 

I would like others on the spectrum to know that they are not the only quirky, very awkward, super hearing, super smelling, super sensing, special interest obsessing, kick ass person out there. They're not alone. 

I wasn't diagnosed as a child because I presented as an awkward, clumsy, anxious girl that threw ridiculous fits about clothes and would rudely correct adults on their grammar. I liked to line up and read dictionaries, encyclopedias and my Mom's nursing textbooks for fun, so I was just kinda geeky. I could make eye contact even though it was hard for me to follow a conversation when I was trying so hard to make appropriate eye contact. I was just "different." 
And honestly, I never would have thought I was either if it wasn't for that book about other women just like me. 

Tldr: 1.I'm 36 and was formally diagnosed with Asperger's or what is now known as Level 1 ASD last year. 

Best accomplishment is actually being an almost good mom. Most of the time. Despite my sensory issues and debilitating anxiety. 

I wish others knew that a lot of the time women present differently than men and the stereotypical view of Autism. 

Nothing around here for adults other than trying to find a therapist who specializes in autistic adults. CBT and exposure has benefited me pretty well.

Random Entry from November

I was riding in a Uber on my way to work. My driver started small talk & asked me about my job. I mentioned I worked with people who are autistic.

My driver said: Oh, autistic, children? 

Me: also autistic adolescents & adults. 

Driver: There’s Autistic adolescents & adults? Really? So there’s no cure? Well that’s unfortunate. 

Me: is it unfortunate? I don’t think it is, and yes, you just don’t grow out of it. 

Driver: I just thought there was medication for it or there was some form of treatment that could get rid of it. 

Me: Do you know what autism is? 

Driver: Not really, I am a bit ignorant on the subject. 

Me: do you want to learn about it? 

Driver: Sure, we have 20 minutes. 

Me: well for starters I’m autistic.

Driver: Oh really? Did you pass high school? 

Me: I have a Master’s Degree in Social Work. Does that answer your question? 

Driver: Oh, I’m sorry. So What is autism exactly? 

Me: *explains how it’s brain development. Vaccines accusation is fake. Every person is unique* blah blah. He asked a bunch of other stuff & I explained it further with the amount of time I had.


I told my co-workers about it & they were shocked that I didn’t slap my driver for their rudeness. 

I thought about why I was un-phased by their blatant ignorance & why I immediately went to just educating them instead of being upset. 

The reason is, I’m used to it. I’m used to explaining to ignorant people what autism is. I’m used to being doubted & looked down upon for being autistic by people who don’t know a thing about me. That driver wasn’t the first, and they are not the last. 

I don’t blame them for being ignorant & being rude, they were clueless. Sometimes it feels like their is a million different mental disabilities that’s constantly being updated with new research. I get it, it’s hard to keep up sometimes. However, that’s no excuse to take an opportunity to teach others & to take an opportunity to learn something new

30 yrs old, 

biggest accomplishment is graduating college. 

I wish others took time to understand Autism. 

social skills group was helpful

Random Journal Entry

At first today was like any other Monday, I called an Uber to take me to work. My Uber driver was an old man well in retirement age. We had a small chat about the recent weather & then he asked me what I did for a living. I told him I work with people who are autistic. He made a comment of something a long the lines of “that must be hard work & really exhausting.” I quickly responded with “You assume that I am working with low functioning autistic people. That’s not true at all. Not all of us are either low functioning or Modern day Rain Man.” He responded with “Oh I know, my was a wife a school teacher. We had a blind student who was also autistic. He was so great at piano & he never had a lesson. “

After his story I then responded with “Well, I’m autistic.” He looked over at me in disbelief. He then asked me a bunch of questions. One of them being “What makes you autistic? How does one be autistic?” I explained to him how my brain was developed differently but I’m just like everyone else otherwise. He then said “Well how do you know your brain is developed differently? I never felt I had anything wrong with my brain.” I laughed and said “Neither do I. I never physically felt any different than you. Could you ever feel like you were growing when you were a kid ? I didn’t.” He then looked at me confused and asked “Then how does one know their autistic?” I struggled with this question a little. I then tried to explain how I knew I was different because I see the world differently. It’s like we live in the same world but I have a small see through veil over me that I can’t take off. I interpret things differently yet I am living in the same environment with the same encounters of those who are not autistic. I know you can’t see my veil & I know others who are not autistic can’t see it. How? They tell me constantly that I’m wrong or I see everything wrong because it’s not their way. That really baffled him & confused him more.. So I tried to explain it in a more bland logical way that I have a communication barriers with others. I explained to him how I also struggle with filtering my words & I am more sensitive to sensory stuff but not all of us are like that.

I felt like he had more questions, but my destination was near & I had to point him to which building was mine. He thanked me for the intriguing conversation & told me to have a nice day.

It was a 35 minute drive but it felt longer..

-Allison Knight 

47 years old and from England.

I have two daughters and I am proud of both of them. They are both decent and kind human beings.

I wish neurotypicals knew that even if we can't show emotion or understand others emotions that it doesn't mean we don't have emotions.

In the UK we have NAS ( National Autism Society ) cards which I use a lot in stressful situation to help other understand that I'm not being aggressive I'm just really direct.

What I want to tell others who are autistic is that one should find the people who accept you for who you are, they are out there. Don't try to be the person others want you to be because you can't. You're you, with all your good traits and your bad and that's who you will be all your life.