Language Translation

Monday, October 17, 2011

The Ups and Downs of Autism

I've seen this written about before, the idea that those of us on the spectrum experience rage and/or depression more often than NT people.  The reasoning of the medical professionals is that we feel completely isolated in a world full of people.  For once, I agree wholeheartedly with what the professionals have said is the cause.  However, I do not agree that the answer is medication for depression or anxiety.

The purpose of medication is for a chemical imbalance...your body simply does not produce that chemical anymore.  The kind of depression that isolation brings, however, is caused by an emotional imbalance.  While the chemicals can be artificially replaced, the medication adds to the problem in the long-run.  There is nothing wrong with the production of the chemicals, I am simply not having the experiences that cause my limbic system to react.

Now, when you take into account the ability to be so acutely aware of others deep feeling, my theory is that herein lies the problem.  I sense your deep concern for another person.  Or maybe the sense of satisfaction and pride you have in your child or sibling or parent.  Then, because you don't know me, your emotional attachment is minimal.  You may feel enjoyment of me, but I don't feel that coming from you, all I feel is the lack of depth when we interact.  This makes me feel like you don't really like me at all.  So, while I am interacting with you and there are the beginning phases of a normal relationship that may grow into more, I don't feel like you like me - more like you are just putting up with me.

With this belief, I begin to be stupid.  I question the friendship.  I doubt your interest.  I think that you are merely one more person who is taking pity on poor, stupid Tara.  I say these things and more, which then cause you to pull away - I mean, who wants a needy friend that will continually question and doubt the validity of the friendship I am giving.  "Fine," you say, "I'll take my friendship where it is appreciated."  And off you go.  Doing as I knew you would.

Do you see the cycle as plainly as I do?  What if I had understood what a basic friendship looked like?  What if I had not expected those intense, deep feelings from the get-go?  What if you had understood that I was misreading you?

I believe, more than any other thing, understanding this one situation and what to do about it will help so many out there who are on the spectrum and are struggling with loneliness and/or depression.  We long for that connection, but don't know how to build a friendship the "normal" way, and sometimes lack the patience to wait for it.  What if I could be trained though?  What if someone could coach me through the phases of a normal friendship?

Now, herein lies the second hurdle that needs to be overcome.  If I am an adult with Autism, living by myself or with similarly challenged people, I have lived my life without feeling this connection.  I am desperate for it.  How do I develop the patience to cultivate that friendship long enough that it will become one of the relationships I long for?

You see, the problem with medication is that it does not teach me any of those skills.  It does numb me, which makes me less sensitive to those around me, which gives the appearance of helping me.  However, underneath the surface, while those drugs are "helping" other things are happening.  My body, which was already producing Seratonin on the levels that were normal for the kind of interactions I was having, begins to produce even less.  So the medication doses increase.  My body produces less, more meds, less natural secretion, more meds.....etc., etc., etc.

What do we do?  Because now we have created a true chemical imbalance on top of the emotional imbalance.  Understand how that happened?  Just in case.  Let's say my body is producing 5 parts of Seratonin.  I need 9 parts to feel at a decently happy level - not ecstatic - just enjoying life in general.  Then medication steps in, let's say they even miraculously get the dosage exactly right.  So let's say I get 4 parts chemical to put me to my 9 level.

Well, that's great!  For a while.  But then I am still not having the human interaction necessary for my body to produce those chemicals on it's own.  Based on my interaction stimulation, my body says I should still be at 5 parts, not 9.  So my body backs off.  I begin only producing 1 part so that, with the added 4 synthetic, I am still at my 5.  So I go back to my doctor.  "This pill isn't working anymore."  He may prescribe something new.  He may up my dosage.  But either way, the goal is to get me back to a 9.

Well, no matter what I do, until I have the external stimulation that justifies that level, my body will keep reacting and dropping the dosage.  Then I'm in a real pickle.  The longer I am on medication, the more conditioned my body becomes to this level of production.  So if I stop taking the medication, after a year or two of lowered production, it is going to take some time to get my levels stabilized again.  In the meantime, I am in a true chemical depression.  What to do now?

The balance could be found in short-term, and I really stress the words short-term, medication coupled with intensive socialization technique.  If I can learn the social skills necessary to build a friendship within a given period of time (not necessarily an I've-known-you-all-my-life-and-know-your-deepest-secrets-and-greatest-hopes kind of friendship - just one that gives a sufficient amount of human interaction to allow my body to normally increase production) I could potentially have a normal life in the emotional realm.  Granted, my gifts will not go away.  I will still be sensitive to those around me.  But I will feel included, part of, rather than an observer and a bystander.

So, let's say I go to the doctor.  He prescribes something to get me to the ideal rate.  I begin social therapy with someone (it could be a family member, a "friend", a therapist, anyone willing to help you see and understand the world around you from their perspective).  I begin to interpret the actions of others as signs of desired friendship, rather than pity taken on someone they look down on.  I begin to notice the signs without being queued.  My body begins to produce a little more of what I need.  Now my medication can be dialed down, to keep me at a normal level.

Then I begin to cultivate the friendships from those who have shown signs of interest.  My natural production increases, my chemical intake decreases, until I am producing normal levels on my own.  This is what the entire human race does on it's own, but we just need a little help interpreting the signals.

You see the flaw in my plan?  Well, I do.  I am not good at regulating myself.  If I find one person who is interested, I am more likely to stay their friend and not seek out other friendships.  But, as a couple of my friends have recently reminded me, no one person can be all for anyone.  That is truth.  And, while I was not seeking that, my actions made it that.

So we are back to the drawing board with one more key player.  Someone to help understand regulation.  If I can learn to switch projects, then I can learn to switch friends, right?  Building a friendship with one person seems overwhelming.  Building a friendship with multiple people feels impossible.  But what if I had someone or something to remind me that I have other people in my life who care about me?  What if I had some way of getting my brain to see the relationships around me?

To be honest, the biggest problem in changing things is that it causes an emotional disturbance.  If it ends up being a positive shift, then I am glad of it.  But it is an unknown factor and so I worry and stress and fear it.  I think that I have a good friend in front of me, the other friends aren't calling me, they aren't talking with me, they aren't messaging me....they must not want to be in my life.  This person is here.  This person wants to be in my life.  Well, okay then.  But I forget that those who aren't here at the moment don't necessarily want to be out of my life.  They just have life going on with them.  That's all.  After a couple of years of reminding myself of this, I do pretty well at remembering, except when I don't. ;)  Honestly, I usually remember except in my really desperate times, and then the following helps.

I have developed a system that works for me.  It may not work for everyone, but it is an idea that may spark other ideas.  I have only had 7 times in 4 years that this tip has not worked.  I have an envelope I keep with me in my purse.  In it are hand-written notes and letters to me from people who love me and have good friendships with me.  Hand-written because it is more personal and I can derive more emotion out of it than I do something that is typed.  They are things these people feel towards me, memories we've shared together, or just random quotes from our lives that make us both laugh.

A few lines from some of them:

"Tara, you bring sunshine to my life!  Pure happiness!  I love your smile, it brings me joy!....everyday is a good day for sharing - especially when you have York mints! ;)  Thank you for being willing to be an instrument in the Lord's hands and help others heal."

"So you don't forget....Tara, my life is exciting with you in it....thank you for having the courage and trust in the Lord to help me break down my door....I love you forever!"

"I love your beautiful blue eyes and how intense they are at seeing through the surface...I love how we can talk about important or trivial matters...I love that you try to focus on what is most important in this life.  You put people in front of "things" and I think it's fabulous!  I love how you are able to find true joy even in the most difficult circumstances - I so love it!...I love how you make me laugh when you get so bossy!  I love that you choose so many good things to do with your time.  Some might get caught up in their grief of blessings not realized - but you haven't and I think it's amazing!  I love you so much and you are such a dear and precious friend!!"

"Dearest Tara, How are you?  You have been on my mind much and something within me desires to share...that which you already know but perhaps could serve as a reminder....Tara you are surrounded by the answers you seek and you have been surrounded by them each day of your know with your heart as well as your head and God has answered your prayers.  You know because you've examined a snowflake, felt sunlight kisses on your cheeks, dreamt of your backpack being taken, ran through sprinklers with no shoes, felt music burst from your heart, and seen a yummy summer squash rise from a mere seed...Please repent and stop being so stubborn (did I mention that I love you!) and I promise He will answer your prayers again and again and again.  He has not given up on you and neither will we so please don't give up on yourself."

"Dear Tara, it was a joy to speak with you on the phone tonight - thank you so much for calling!!  My reason for writing thank you and also to tell you why it was especially pertinent that you call when you did.....(story, story, story) point in telling you this is that your call, right before hearing this news, prepared me for this tragedy.  I had been buoyed up by your confirming words and by the evidence of your goodness, and I knew that even if ****** had lost the perspective I had offered, you had just let it lead you to glory!  I was so grateful to know that one person out there - you - had found joy because of me.  Thank you for calling me and reminding me of goodness just before I heard about my lost friend.  You are still my great are an incredible strength and tower of your own now, and obviously I have complete faith that you will follow this path for the rest of your life.  That assurance is a gift you have given to me and I thank you.  Some are won and some are lost, I guess.  I've lost *******, but your victory is worth so much more.  I love you!"

"Dear Tara,  I have been watching you lately and want you to know how much I appreciate you.  You always have a smile everyday and seem to always be in a good mood.  You have touched my life in a way no other person has, and I thank Heavenly Father each day for sending a friend so special to me.  You're someone I would like to become.  Thanks forever many times, for being that great influence on me."

"Dear Tara, I wanted to let you know how much I appreciated talking [recently].  The day you called, I was feeling frustrated with the seemingly stagnant state of [my marriage].  I was unsure, as explained, about what path I should be following....Your advice was a real light - or breath of fresh air to my consideration.  I've felt some sense of peace since that time.  I really want to thank you for following the prompting to call just then. :)"

Anyhow.  You get the idea.  I have about 20 of such notes that stay in my envelope, tucked into a readily available spot in my purse.  These notes tell me what they love about me, what they enjoy about me.  I read them when I am feeling down and lonely and they almost always help.  Then I don't feel quite so alone and I am able to face the fact that those who are physically in my life may need more work and time before they are ready for a true friendship with someone like me - which Heaven knows is not a simple thing to take on.

I find, through these things, I am able to keep a level of balance that, if not happy, is at least content.  I do still long for a best friend, that person I can talk to about everything and at anytime.  But I have recently been reminded that, according to "normal" definitions of that word (which I refer to above), I am only going to find that in my spouse - which is as it should be.  So, in the meantime I will face the "loneliness birds" which circle in my heart and lay their stone eggs*, with slingshot in one hand (my packet full of letters) and their own stone eggs in my other hand (my knowledge that loneliness is an experience that one day every person will face and maybe by weathering it well, I can help others do the same).  One day those loneliness birds will take flight for good, and I will be left with my heart full of loved ones who are as glad to be here as I am to have them.
*This is a reference to the book, "The Power of One" by Bryce Courtenay


  1. Thank you Tara for your beautiful truth! My daughter Sarah is 10 and was diagnosed 3 years ago. I have refused to medicate her for all the reasons that you have mentioned. Sarah's biggest struggle is friendships and it was so wonderful to hear your truth about how you percieve friendships as I know thats exactly how she feels but is to young to put that into words. I think the idea of an envolope full of love is a wonderful idea and I am going to start it today!!! Bless you for your beautiful heart, this is exactly what I needed to read today, much love Lee xx

  2. OMG ! This is exactly how I feel!! My name is Jennifer and I was just diagnosed 3 years ago with mild form of Aspergers when I was 23! I am now 26 almost 27 and have been dealing with this thing for a long time and Im hoping things will get better the more human interaction I have with people.

    You are soo good at explaining how you feel about this b/c this is exactly how I feel about whenever I take/took my medicine just to realize it wasn't helping and wasn't what I needed. Thank you so so much for writing this.. A lot of people like me could relate..
    I live close by to you in Maryland; so I hope we can get a chance to meet!

  3. Thank you so much. My son is 11 and diagnosed. I know he doesn't sense or associate with things the way we do, but having read your explanation has given me so much insight into how he might see it. Might just help in discussing emotions with him.