A Mothers Perspective on Aspergers

After reading my posts about My Aspergers, my mother wrote me an email response giving her perspective. It’s not really Jiu Jitsu related, but this is my blog and I can upload whatever I like here! Ha!

An Open Letter From My Mother

Looking back over 28 years, now knowing that you have been diagnosed with Asperger’s Syndrome, a lot of things now fit into place.  As a parent, you guilt yourself with questions like “how could I have not known” and “how could I have let my child down”; “how could I not notice their suffering”?  Back in those days, however, even though I was interested in different psychology issues and read a lot on the subject, including autism, it never even once occurred to me that there was something “wrong” with you in that regard.  You were our wonderful firstborn beautiful baby and you were perfect.

 Probably the first thing that stands out in my mind as something different from the norm was when you were about three years old.  We were at one of the Stoller Family Reunions at Lake Billy Chinook.  These annual gatherings had many, many children, since there was a big batch of “cousins” who all had children around the same time.  You wanted nothing to do with playing with the other children.  You preferred to go from adult to adult and talk one-on-one with them.  You especially loved spending time with your Uncle Don Sadler and would talk on a variety of subjects on a level much older than your years.  I also remember when you were four years old and in preschool that when I would take my time working in the co-op preschool, about 3 days a month, you never left my side.  I assumed that once you got used to the program you would gradually begin to play with the other kids, but that rarely happened.  Even after two years at the preschool you still would clamp to my side whenever I was working there.  When I wasn’t there, the teacher said you preferred to sit and read in the book corner or sometimes play by yourself.  We just thought that you were shy.  Since your brother was just behind you in age, I was a typical busy mom and didn’t really notice anything unusual.  We always considered you to be our beautiful, talented, extremely brilliant, somewhat quirky (in an affectionate way) and precious daughter.

 You excelled in school academics, but had trouble making friends.  By first and second grade you had a plethora of somatic illnesses that did concern me, as they did correspond to the school days; headaches, stomachaches, extreme bloody noses that were difficult to stop, to say the least.  You looked anemic very often.  Several times I took you to the doctor for blood work and a check-up.  After repeated tests and exams that were negative, they told me that they felt it was due to stress.  We did not know the reason for the stress, but since it related to school, we made the decision to homeschool.  I will say that we saw a reduction in those symptoms after that, although I get some criticism from both friends and family members who said I needed to “force you to learn to get along with other children”.  It was interesting to me that some of this advice came from people who HAD no children at that time!  You spent most of your time, when not schooling, in your bedroom reading, listening to music and/or involving yourself with your “critters”.  There was a wide variety, from frogs and lizards that you caught and fed crickets to, cats, dogs, gerbils, hamsters, your precious bunny, Oreo, guinea pigs, and chinchillas.  Chinchillas were your passion for several years.  You bred and sold them and they were a big part of your life.  Sunny, your first chinnie, was your special little buddy for some time.

 Interestingly, although you always had a fairly large “personal space bubble”, even as a teenager you would sit with me in church and spend most of the time leaning up against me.  Your lack of friends was always a concern and you never really bonded with your peers, but rather your animals were your best friends.  I think the other kids looked upon you as an oddity and they didn’t know what to do with you.  When they got a little older and more tolerant and tried to make friendly overtures to you, you would not accept them and would withdraw.

 Understand, that at this time no red flags went off.  Yes, you stayed in your room a lot with books, but so did I when I was a teenager.  Your dad also didn’t have a lot of friends growing up–he was too busy–so neither of us thought that this behavior was anything other than a personality trait.  It was concerning that you had a hard time balancing interests, although it is something that was less obvious when you were very young and is more prominent now.  When you took up martial arts, you would practice the form every day for hours.  You were very focused….but, your dad also had that trait, so we didn’t really think much of it at the time.  What became interesting and concerning to me as you grew older was that I noticed more that you focused on only one thing at a time and put all your time and energy into it.  When it was the chinchillas, you knew everything about them.  When it was the martial arts, you went at it full steam.  Then it was Bible college and music.  You had never taken piano lessons until college, but now you can play awesomely.  You also took voice lessons.  During your music phase you played, composed, sang, recorded and had lots of wonderful memories.  It is sad to me that as you moved through each of these phases, you would end one when you started another.  I was worried that you couldn’t find balance in your life and that still is something I know you work on.  It is sad to know that you once spent 3-4 (or more) hours a day practicing piano and now you rarely play and want to sell (or have already sold) your keyboard.  You left chinchillas behind you long ago.  As a parent, I would have liked to see you continue with the things that gave you so much pleasure, but in more balanced doses, but that may be something that takes a lifetime for you to do.

 Of course, now you have BJJ and just like your other interests, you give this one 150% of your time, focus and energy.  It shows, of course, in how well you have done and how you have progressed.  This worries me, of course, because I don’t want you to get hurt, especially with the line of work you are in, but you are an adult and I have to trust you to know your own limits and take care of yourself.

 Looking back, now, I sure wish we had known them what we know now about Aspergers.  I feel guilty that I couldn’t give you the tools you needed to help you cope better during that time.  Do I wish you didn’t HAVE Aspergers?  That is a trick question—of course every parent wants their children to not have to suffer or go through difficult times.  We want to make it all better.  However, I realize that this is who you are.  If you didn’t have this disorder, you would not be YOU.  Of course we would love you, but you would be a different person and I can’t imagine you as anyone other than Nicholle, yourself.

 Most of all, I am happy that you finally got peace with this diagnosis because then the world started making sense to you and things became clear.  I’m sure it still is a challenge, but you know and understand the WHY that is your thought and sensory processes, and that clarity helps bring order to chaos.

In Closing:

Thank you Mom for sharing! It means a lot to me, and just maybe it will help someone else as well!

Jiu Jitsu and Aspergers pt 1 – My Aspergers

This is a post I’ve had in my brain for quite a while, debating on if I should share, and decided to just go for it. Hopefully it ends up making sense! In this first post, I’m just gonna go over what my Aspergers is like. In my next post, I will be explaining how this affects my Jiu Jitsu, and how BJJ has helped me.

Five years ago, I was diagnosed with Aspergers Syndrome. Aspergers is an Autism Spectrum Disorder – I’ve heard some people describe it as “high functioning Autism”

So what does that mean for me? Well, each person is a unique case, so I’ll run the risk of megalomania, and just tell you about me.

Sensory Processing

First off, I’m hypersensitive to sensory input. I adore music, but can’t handle most concerts because of the combination of light, sound, movement, etc just puts me into overdrive and I end up going “space cadet” – I don’t really know how to describe it other than that, I just shut down to barely functional levels. It was really bad once and I had to be led out of a building in a semi-catatonic state – Scared a friend of mine pretty badly!

Stimming

Now I do have a way around this. It’s called Sterotypy, or “stimming”. When I was a kid, I would get stressed and start very slightly rocking my upper body in a circular motion. My Mom thought it was because I was dizzy (and even took me to a doctor for vertigo) – sorry Mom, I just didn’t know how to explain it at the time. I wasn’t dizzy; it just made me feel better to do it. The repetitive motion seemed to numb me enough that I could keep myself together – I felt like I would fly apart at the seams otherwise.

As I have gotten older, I have learned how to stim without it being so noticable. I can put my hand in a pocket and flip a coin, touch my thumb and fingers together, etc. Usually I’ll get a far away look on my face, and people assume I’m thinking deep thoughts. I’m not – my mind is actually blank at that point.

Patterns

I absolutely ADORE patterns. Once I find the pattern in something, I quickly excel at it. I love playing classical piano, and can sit there for hours just lost in Mozart and Beethoven. I also love drawing (see some of my artwork here), and organizing things.

Yes, I do have that compusion to organize things. My closet is a perfect rainbow of color, and my books are divided by category and then alphabetized by author last name. Oddly enough, there are some things I obsess over organizing, and other things that I couldn’t care less about – not sure what that’s all about…

Obsessions

I always have one thing – maybe two – that I am interested in. Always. And I learn everything about it. I’ve been obsessed with bugs, with mud, with animals… I raised chinchillas for several years. As a 12 year old child, I could sit down and show you detailed genetic information about each chinchilla and their possible offspring.

Whatever I’m focused on, it gets 150% of my attention – neglecting everything else. It’s all I can think about and talk about. I have gotten much better about trying to spread out my conversation topics – since not everyone wants a 45 minute monologue about anything, much less the newest particle physics discovery. Also, I make sure I pause every 10-15 seconds while talking to allow the other person to respond. Practice has made this work a lot more smoothly for me – but sometimes when I get excited I just keep talking. I don’t take offense to someone telling me to shut up for a min – so if I ever do this, just stick a hand up and call for a break.

Social Cues

Here’s where I stumble the most. I am absolutely hopeless when it comes to social cues. Reading facial expressions, vocal tone, body language… it’s a nightmare of misunderstandings for me. I’m sure I’ll get it some day, but I have to rely on what people say, since if I try to read non-verbal language cues, I usually make gross errors.

On the other side of that coin, I don’t know how to use proper facial expressions/etc. I have gotten a bit better, but as a child I was typically stone-faced and “unreadable” to most everyone. Even now, I watch my videos and I feel something is “off” but i don’t know what it is. I still have problems with eye contact as well – I fake it most of the time.

Social Flow Charts

Believe it or not, my brain operates a lot like this. I have very complex social flow charts in my head that script most of my social interactions. This doesn’t mean that what I say isn’t sincere! I just can’t figure out on the fly out to correctly say what I intend.

And yes, when I lose my filter, Sheldon = Me.

MORE Social Stuff

Right now what I’m focusing on is trying to have actual conversations with people. The normal conversation goes back and forth, as the topics change and meander around. This problem, for me, goes back to my script. If someone brings up something that I don’t know an appropriate response to, I panic. This usually then results in either me blurting out something completely ridiculous (mental short circuit), or trying to re-direct the topic back to familiar territory.

I’m starting to get the hang of asking questions instead of just diving off the conversation ship. The problem with questions, is that it takes me off script and that is where I tend to make more social mistakes (and trust me, some of them have been horrendous!) Thankfully, I am currently surrounded by people who, for the most part, shrug off my mistakes and just move on. So in that safety, I am slowly growing and learning!

Frustration

All of this put together made for a very frustrated individual. I thought I was an idiot for not being able to fit in and be part of the group like everyone else. I may not have known how to express emotions properly, but I still felt them. I felt trapped inside my body and just didn’t know how to get out, or ask for help.

I’ve adapted quite a bit  in the last several years. People who know me as an adult are usually quite surprised when they learn I have Aspergers. Those who knew me as a child tend to nod and say “well that makes a lot of sense…”

If there were a cure, I wouldn’t want it. I love how my brain works. Sure, I can be a bull in a china shop at times where social graces are concerned – but I have learned to cover fairly well in the last several years. Jiu Jitsu is one of the things that has really helped me a lot in that regards, and I will expound on that in part two of this post.

Click Here for Part 2!