Wednesday, March 30, 2016

Coming Out of the Autism Closet as a Grown Up!

So, yes... I just dropped the A **BOMB **  The Aspergers Syndrome Bomb.
I have ALWAYS known I was different, always wondering why I didn't see things the way others around me did.
I remember having very very few friends and not being able to keep the ones I did have.
I remember very little about being a young child- Life was chaotic and I am probably lucky that I do not remember much.
As I became a Tween and Teen being social was very hard.

The girl crying in the bathroom- That was me, ALL THE TIME.
The girl standing in the corner feeling left out- That was me.
The girl saying things that she wish she hadn't- That was me.
The girl who seemed to smile while her mother yelled at her- That was me.
The girl who laughs at inappropriate times- That was me.

The girl who nervously picked at her jeans, blanket, etc- That still is me.
The girl who Rocks when trying to concentrate or when in awkward social situations such as church- That is still me.
The girl who avoids social contact at all costs- Yep, still me.

The girl who feels pain sometimes when touched- Me again.
The girl who cant tolerate singing out of tune or certain tones- OMG!  That's me and another reason attending church is so hard for me-  (I physically have to keep myself from holding my hands over my ears, but my facial expression cant be stopped).
The girl who freaks out when plans change- That's always me, and  it is one reason I try not to make plans very often.
The girl who over prepares for any trip, Big or Small-  Me, Me, Me.
The girl who cant grocery shop because it gets to be too much- over stimulation to my senses- Me, and its a real problem when you have a family.
The girl who loves to craft but always ends up organizing the ribbon or fabric for hours and never gets around to actually making anything- me- but I kind of enjoy this one.
The girl who is very very sensitive to facial expressions or voice tones- and sometimes the inability to read what others are sending- that's me and it causes me much trouble even at family functions.
The girl who cannot stay at one job despite having several great opportunities- This is probably what most of my family and former friends talk about.
The girl who really really does not want you to fake hug or shake hands with her-   That's me, all the way- however the very few people I let in- My spouse and my kids- I enjoy their affections-  just not strangers or people I am not totally comfortable with.

The girl who is Very Sensitive to Smells and textures-  Yes, this is my curse.  Talking to someone with even mild bad breath is torture for me.
The girl who cannot look you in the eye but perhaps will have a conversation with your forehead or lips-  This is me and I have often been called out for it.
The girl who is obsessed with drawing lines with gel pens-  Yes, Me and its something I can even remember doing in high school in class as I could not focus while sitting still.
The girl who itches uncontrollably when anxious- Yep, and I have the scars to prove it.
The girl who wants everything in order but gets too overwhelmed to keep it up or focus on more than one area- My whole family will tell you this is me.
The girl who cannot keep a secret or tell a lie-  Often I have been shunned for this-  I seem to say things out loud that I shouldn't and its hard for me to understand why every ones mouth dropped.
Read more signs here- Asperger Syndrome Explained
There are so many more Signs I had all of my life but as a Kid born in the 70's, Autism really wasn't something people were looking at.  In my life it was behave or be spanked or worse.
I'm sure any signs I had as a child were taken as misbehavior or defiance that could be beat out of me.
I never had many friends.  I didn't seem to fit anywhere.  Things bothered me that no one else seemed to be bothered by.  It felt as if I lived in a world and no one could see or hear or smell the things I did. I vividly remember feeling this way.  I remember being brutally honest telling a friend "Are you really gonna wear that?"  At 16 I lost my best friend.  Finally the friends mother forbid us to be friends anymore because of my behavior and family.  It was devastating and further proved I was different.  Read about the Asperger Teen
Sometimes I was super Hyper and excited but I would crash.  This happened all the time.  From afar some people seemed to think I was fun and happy.  Once anyone got close they would realize that was far from the truth-
Not being able to accept change was a big hindrance.  Even the smallest cancellation would rock my world and set me into a tailspin.  I would lash out and feel so angry.  To this day when I am ready- I am ready.  I try to plan it down to the second and if anything goes array I get very uneasy and sometimes just end up going to bed to control my anger.
I have a comfort zone-  Its what I use to cope.  It changes.  My husband is a comfort zone of sorts. Even though as of lately I do not like him so much (we will talk more about his behavior later), when something goes wrong I instantly want him there.  I feel like I cant handle anything when he is not there.  I once got upset while he worked a midnight shift at a grocery store several miles away.  Being the irrational me, I walked all the way there at night by myself.  By the time I got there I had no idea what made me do that.
I have had Blankets that I got really really attached to.  Yes, I am an adult with a Blankey.  It helps me feel safe at times.
If we go on a trip my blankey goes too.
This is a weird one that many do know about but SHOWERS-  I hate to use a strange shower and I hate to stand near the drain.  It makes it very difficult to shower and I often use a 5 minute process to clean the tub before I get in.  You can say I hate OPP (other peoples pubes lol).  Just the thought of my feet stepping where someone else's did in the shower is horrifying.  I also do not reuse bars of soap.  This is why often I just use body washes.
I do not like to sit next to strangers, including in a church pew.  At events or movies I have to have the outside chair so I feel in control as sometimes my "Fight or Flight" reflexes kick in and I am always aware of my exits.
Sitting in a restaurant I always choose the chair by the wall so that I am not in the center of the room with only people behind my back.
There are many qwerks I have had all my life and some that have gotten worse over the years making it very hard to work with the public.  Some I have just learned to deal with the best way I can which is probably not healthy, but is why some of the behaviors go un-noticed.
I have always loved working with kids and many say I seem childish.  Kids like me and I seem to have a knack at working with them.  My reasoning for this is that maybe I can trust the expressions and reactions of kids as they have not yet learned to act as expected or say what is acceptable.  They are usually brutally honest and I appreciate that.  Being creative is also very theraputic for me.  I dont create or make things for money (although it would be nice to sell them).  I do it as a sort of therapy.  To occupy my mind and get all the ideas out of my head.
Some wonder how in the world could you be and Adult with Aspergers?   Don't kids usually have that?  Is that even real?  Did you make that up? A Good read for your Family and Friends "Austism"
I have felt all of these things.  At 22 I had my first child.  It was stressful to say the least.  He never slept. I was having to deal with more family interaction then I was comfortable with which made me panic often.  Since I knew being a mother was important I finally saw a doctor about it-  Remember I was young and often had no health insurance during these years so there are many reasons these symptoms were missed.  My chest hurt, my blood pressure was sky high, and I thought I was dying.  The doctor said I was having "Panic Attacks".  She put me on medicine and I swear-  For the first couple of months I saw the world through the eyes of the others around me.
It was incredible, how could I have not known these things, or said those things out loud.
As time went on I guess the medicine effectiveness faded and I would be on and off the medicine because of no health insurance.  I went through many many jobs, but I tried to work and was not afraid to work.  Getting promoted quickly and being very good at my jobs only to run away in a panic over nothing, really took over my 20's and some of my 30's.   It was just the people I had to work with.  I could not relate and always felt alienated when some would tell me, it was just in my head.
I honestly could not help feeling the way I did but I didn't know how to explain it to people and people just viewed me as unstable.
Attending family functions was and still is a big trigger for me.  Its a pattern days before to start panicking, finding excuses not to go.  The way I have learned to cope with these situations is to avoid them but now that I had a husband and kids it wasn't always possible, at least not without a lot of drama.
I often feel useless and hopeless because of the way I view the world.  I know I am hard to live with and many people tend to just avoid me.  I get it.  Who wants to hang out with the Weird, Immature, Awkward, Sweating, Standoffish, Secret telling, Blurting out, grown woman?  
My Sister in law whom I met at 17 had known all of these things and she at one time was my comfort zone person.  Life got complicated and I got to be too much for even her, and then the worst thing happened.  She passed away way too soon and too young.  I had let so few people in and she had been with me through so many important times in my life.  It was very very very hard to deal with the pain, especially with my inability to really know how to grieve properly.  Do I cry in front of people? It seemed as if anyone whom I felt connected to and "Safe" with was gone.  It was a very hard phase in this process.
Finally after my 3rd child I knew I had to get on some regular meds and get some real answers.
It meant I needed to see something all the way through.
It was HARD.
Talking about my problems and past to a stranger was the worst for me.  Often times I would just sit silently.  Other times she would get me to talk.  I got comfortable with her and really let her in and told her things I had told no one.  Often times I felt I couldn't say some of these things out loud because it would make me look like a bad mother and they would take my kids.
She assured me she could see my kids were taken care of.
She gave me many tests and had family members fill out questionnaires about my behaviors.
I got a diagnosis.
Severe Anxiety Disorder
Those first 2 really got me.  I thought only military got PTSD and only kids have Autism right?
I'm not "Special", I function.  How can this be?
We wont dive into the PTSD now but trust me the few that I have told have had many laughs about it and is one reason I haven't told anyone about the Aspergers.  They would just laugh.  They wouldn't believe it, and I would still be a freak.
After talking with my Psychologist about it for weeks it actually gave me a Peaceful feeling.
All this time I could not understand why I acted the way I did.
 What was wrong with me?
Why am I different?
Why can't I just conform and act like everyone else?
This gave me answers that I needed.  No, not a cure, but a great start to figuring out how to better deal with situations and fit into the real world with real people.
 But if people know they wont let me teach or work with kids right?  So I hid it-  for about 4 years now I have know and I have told 3 people.  A close family friend, another close family member, and my husband.  Only one of them actually took it seriously.  That further confirmed that I should keep this on the down low.  My current close friends will probably not believe it exists.
If the people closest to me cant take this seriously how can others?
 If they cant see that my behaviors and symptoms lead right to this can I really have it?
They added an ADD medicine to my anxiety medicine and it seemed to be somewhat effective.
Then the worst thing happened.
My psychologist got promoted.  That was expected as she was great.
She told me that I should be applying for disability and that would require me to see someone more than once every month or 3 months but with her new promotion she could not see me that much.
I was crushed.
Did she know how hard it was to warm up to her?
I don't want to open up and tell all of my woes to someone else.
So following through was not happening for me.
I did go to her suggested replacement for several months but we mostly stared at each other and sometimes she would talk about herself or our kids.  She was no help, and it may have been my fault for not being able to get close to another therapist.  The psychiatrist who basically just wrote prescriptions also was very very hard for me to read.  Her voice gave me a bad, I don't like you feeling.  Like your mothers voice when your being scolded.  This may have not actually have been the case as I tend to misread people.  However, that was all it took for me.
So my diagnosis has been in hiding all this time.  My dirty little secret.  I have been so close to telling a few but I just could not figure out how to bring it up.
I'm sure many will still laugh at me.
Some will avoid me as its awkward and they will look at me differently
Why should I be ashamed of a Diagnosis or Name that explains all the behaviors these people, family, co-workers, friends, etc.. have been telling me to stop doing?  Telling me to act right and fall in place didn't work for a reason.
I am coming out so to speak now because of my children, because of my marriage situation, & because I want to live and be happy.  I dont like hiding things.
Do my children (2 of them) show signs of Aspergers because of my behaviors?
My youngest who is Very QWERKY and AWKWARD-
Is it Aspergers?

Are they just doing what they have been taught and  feeling the way I have felt- etc. because that has been their environment or because they really suffer from this syndrome?
Does Aspergers really exist as a syndrome or is it simply something we named odd behaviors in clusters?
Some people are just odd right?
I hope making this OPEN will help others Come out and tell their closest friends and family about their diagnosis as I honestly think therapy wont work if the ones around you are not working in your favor.  Maybe people will quit laughing behind my back, thinking I am stuck up or rude, and understand when I seem out of sorts or don't show up.
 Its for a reason that I cant always control.
I stay home surrounded by very specific people for a reason.
The only reason I leave my home is because of my kids and know many hours of preparation has taken place for the simplest of tasks like Ball practice or Doctor appointments.
I stress for days before planned events.
I'm hoping that by having a voice here on the blog, it will help me be more vocal to those around me and I hope they take me seriously.  
Please feel free to share your experiences with Adults with Aspergers or even your own diagnosis.
What resources have you found useful?
Please while researching try not to self diagnose too much.
I am sure many people have a variety of these signs and symptoms but a
professional really should be contacted.  Find one you trust and feel comfortable
telling it ALL too.  You can't sugar coat it or leave anything out.
I have read many other threads about this and so many other adults are in hiding as I have been and its so sad.  So many who could be leading happier lives but are not because they are ashamed of being labeled/diagnosed with something KIDS get diagnosed with every day.  Kids with Autism have fundraisers and awareness months.  People buy license plates to support the research.
What about when those kids grow up?
More Awesome Mic Drop Moments Here-
Note:  *No, I am not on disability.  I did not want that on my record as I totally intended to go back to substitute teaching when my last child started kindergarten.
*Yes,  I work at home on my Crafty Moms'R'us page as a way to work but while avoiding triggers that cause outbursts and flare ups. Very little grown up contact and I can hide behind my computer screen. Thats why its so important to keep my business running any way I can.
*No, I am not a bad mother.  Something about being with kids soothes me, it seems to bring out the best parts of me and I dont feel the pressure I do when interacting with peers or other adults.
*Yes, I seem functional from afar but know that it takes everything out of me to get through some of the day to day things others dont even notice.
*If you see me being social you will probably notice its with the same small circle (very small- like one or 2 people) and the others are probably my teens friends.
*If you see me at social functions know that I felt I had to and was most likely coaxed into it by my niece, husband, or the one friend.  This includes church, school functions, family functions, etc.   Its not that I don't like those things or the family, its that it brings on anxiety and fears that I dont want to deal with.  So please dont NOT INVITE me because you think I wont show up anyway.  I have kids that would like to attend these things and need me to be pushed sometimes so they get to interact socially.