What Aspergers Means to Us

Hey, Adam here. So, I have Aspergers Syndrome (AS). Just thought I’d get that out there. I was diagnosed last spring, ten months after Spencer was diagnosed with AS. We had not told any people about my diagnosis because it never really felt relevant. Since then, I’ve read a bunch about adults with AS. Research shows that the presence of autism in older generations is roughly equal to kids being born now. That means that the “autism epidemic” you often hear reported is nothing new. We are just better able to recognize it now. It occurred to me a couple days ago that I likely have at least one or two friends with AS/autism and don’t even know it. It has benefited me greatly to understand my place on the spectrum, and I’d like to shine light on it so that if any of those who know me are on the spectrum, some of this might resonate with them. Hence, this post.

Background
For a couple years prior to my diagnosis, I had been trying to find an answer to why I had been having difficulties coping with life in general ever since Spencer had been born. I searched and searched all I could trying to figure out why I would have mental breakdowns just because there were dishes to do. Why mentally scheduling a few tasks for a Saturday literally (and I mean that literally) felt as impossible as calculating higher-order derivatives without a pencil and paper. Why more nights than not, I dreaded spending time with my family after work. Why I got moody and grumpy every weekend before church or any social event and felt immense relief whenever such events were over.

Eventually, thanks to Spencer’s diagnosis, I was able to match up nearly every single one of my struggles with those typical of someone on the high-functioning end of the autism spectrum. I’d like to go through three specific aspects of how AS has negatively affected my marriage/family life and how learning about AS has shifted it in a positive direction.

Emotional Intelligence
Wikipedia states that “Emotional intelligence (EI) can be defined as the ability to monitor one’s own and other people’s emotions, to discriminate between different emotions and label them appropriately, and to use emotional information to guide thinking and behavior.” Did you know that there are actual psychological evaluations to assess emotional intelligence? I’ve taken some of them. I didn’t do very well, and it turns out I’m not alone. Many (most) people on the autism spectrum have a hard time with it. For me, specifically, I can label emotions just as well as anyone else in a removed, third-party setting. Unfortunately, in a live setting, I almost completely lack the ability to monitor, discriminate between and label emotions going on in others and especially in myself.

I’m sure you can guess as to all sorts of marital hazards that can arise from this. They have taken a few forms for us, but I’d like to share one type. When disagreements have come up for us, emotions tend to accompany them. Well, at least they tend to come from Jessica. I definitely feel them, but I have incredible difficulty expressing or even understanding what they are. On top of that, the emotions Jessica is showing are hitting the impenetrable wall that is my brain. It has led to some difficulties in communication. Pre-AS diagnosis, this would often end with her in tears and me wondering what train of bricks just hit me. I would literally have no clue how to interpret all her emotions as anything more than just “sad” or “mad”. They were like a foreign language to me.

One other problem would always accompany such conversations: I would “shut down” in the middle of them. It was never a conscious decision. My emotional center, and also most of my mental faculties, would close for business. I would literally be unable to answer more than yes or no questions. Post-AS diagnosis I have learned that this is a common thing for those on the spectrum. Another term is “overload”. I’ve come to understand that emotions’ (especially negative) affect me in a way very similar to very loud noises. It is much like someone is yelling. And the more the emotion is directed at me, the more deafening. The other night I saw someone crying (happily) and hugging someone else that I knew, and I couldn’t look away. It felt like they were making so much noise and was very, very distracting when it actuality it was very normal for the environment they were in.

Learning about AS has helped us understand that I can participate productively in disagreements or conversations-in-conflict as long as we take the right approach. Jessica is allowed to be emotional with me, even negatively, but I might just save my contribution to that conversation until after everything is cooled down. I am not off the hook, emotionally. I have learned that I need to share how I’m feeling with her, with the understanding that it might not be at “normal” times.

Jessica’s two cents: Once we started to understand how to better communicate with each other and our reactions to one another, we’ve been better able to avoid any overly emotional crying upset moments on either of our parts.  It took some time and a rather steep learning curve, but it has really helped.

Executive Functioning
“Executive functioning” can be simply described as being the CEO brain process that manages and runs all the brain processes that get you through your day. You can read a great write-up of how autism and executive functioning interact here.

One of the most common examples of “executive dysfunction” in my life as a parent has been common household chores. If the dishes need to be done (which they MUST be done, a completely different topic), my brain has to plan it out to the nth degree how to accomplish it. I will automatically start virtually loading the dishwasher in my head and plan it all out. If I can’t get them all in, in my head, that brain process shorts out and tries again. This all happens in less than a second and fires off like that over and over and over again.

This was all well and good when we were married without kids and had all the time in the world to dedicate to things like dishes and vacuuming. After having kids, that all went out the window. Now, I have no time to spend all my brain power analyzing optimal dishwasher configurations or vacuuming patterns or order of operations in bathroom cleaning or even the best order in which to do all of these things. Now, I have children who constantly want my attention and don’t allow for those important thoughts (please note sarcasm!). Pre-AS diagnosis, I (very stupidly) kept falling into the same trap of letting my mind constantly work on all the problems all at once while juggling kids. It always led to a breakdown (meltdown) of one form or another.

Now, post-AS diagnosis, I’ve learned about all this and can deliberately set those processes aside. Yes, I will still have to do the dishes, and you can bet that while doing them I’m still going to be figuring optimal placement (though I’ve learned to distract myself with music or TV so that I don’t burn out my brain). I know now that I have to pick one thing, announce it to the whole family, and do that one thing only. Even if that one thing is “play with the kids”, I can mentally set aside all other tasks. It is admittedly still very difficult, but simply knowing how my brain works is quite enabling.

Social difficulties
Along with my AS diagnosis, I also received a diagnosis of Social Anxiety Disorder (SA). It does fit quite a bit. The AS part of me has a very hard time understanding social and emotional conventions, and the SA part of me gets very anxious about being conspicuous because of that difficulty. It can be very frustrating some times and a negative loop. It is why I generally prefer to have my social interactions in very small groups. I love game nights at my house because I don’t have to focus on so many people at once. Social language is very much a “noisy” thing to me like emotions. When people exhibit some sort of conspicuous social interaction, it is very distracting to me and hard to ignore. When you get a lot of people doing that all at once, it gets overwhelming very fast.

Pre-AS diagnosis, this would result in me shutting down in many social situations. I would be no fun to Jessica because I would be dead weight and possibly ruin what, for her, is something very enjoyable. I also had difficulties transitioning to home life every evening after a socially draining day at work and would not be a pleasant person to be around. Post-AS diagnosis, social situations aren’t necessarily any easier, but I’ve learned some ways/tricks to resetting my brain such that I can “stay in the game”, if you will. Also, I’ve learned that if I just vocalize the stresses from work to Jessica, she can give me space for a while when I need it which goes a long way towards me giving her the one-on-one time that is important for our relationship.

Jessica’s two cents: Adam is not the only one who is aware in this situation. I’ve been able to identify some of the things that indicate Adam is approaching overwhelmed before he gets to that point and am able to better help him or even tell him to take a moment to go reset before it becomes an issue. We are not perfect at this, but we are getting better and more understanding of each other’s needs.

I don’t mean to paint a bleak picture or anything because, ultimately, I am a very high-functioning person and feel blessed to have always had good supportive friends in my life and to have found so easily my wonderful wife. I know a lot of people on the spectrum suffer so much more, in general. But, if we can improve, any of us, our lives with a little more mental health knowledge about ourselves, it can be incredibly beneficial.

Sorry about the long post, and if you actually made it this far, you deserve a medal. 🙂

Living with an Aspie: Starting School

This is Spencer on his first day of Pre-K

Starting school is a fun time of year for a lot of kids and families.  It’s exciting with all the changes and things happening.  They just can’t wait to see who their child’s teacher will be and to send them off to school.

Well, that isn’t the case at our house.  The start of school means the end of all our summer routines, which brings about a mega case of meltdowns.  Throw in the fact that Spencer is going to a big public school (new building), new teachers and new amount of time being in school, and you’ve got the recipe for major pain.

To combat that, we tried a few things to help ease the transition from mostly being with Mom all the time (and a very small Pre-school class), and for the most part I think what we did REALLY worked.  Starting a week and a half before school started, we went up to the school EVERY day and started working wake up time to school wake up time.

The first time we went up to school, we met the secretaries and some of the counselors and learned the procedures for dropping off and picking up Pre-K students.  Everyone at our school has been SO accommodating to Spencer and his needs, it’s been wonderful.  Anyway, we practiced dropping off and picking up.  Then we would also practice walking from the front of the school to Spencer’s classroom (area before we knew which room for sure), from his classroom to the resource room and vice versa, and from his room back to the front of the school.  We made sure he knew how to get to the important places he would go during his day at school.

What is your teacher’s name? Ms. Austin (I caught the end of him saying it. Can you see it?)

When school started, he was VERY confident about where he was going, and I know that eased some of his anxiety about being at school.  The only thing we could not simulate was the number of people who would be in the lobby and moving about the school while he was.  The large crowds make him very nervous.  He’s getting better and better about going where he needs to go everyday though.

We also created an All About Spencer folder for his Pre-K teacher and his resource teacher.  This folder included a letter about Spencer and his diagnosis, and what that really looks like with him.  It also included a 4 page Sensory Profile for him.  We were hoping these things would give his teachers a head start in dealing with him, and it REALLY has seemed to help.  The last two days, his resource teacher has been sick, and has had a sub there for her.  Everyday, the sub has been waiting up front to be introduced to him with the para-professional that Spencer already knows, and he has gone with them mostly willingly.

I’ve been so impressed by all the faculty and staff at our school, and how willingly and lovingly they have taken my daringly son into the big elementary school.  He still has his bad days, but I know it could be SO much worse.  Here’s hoping things continue to work well.

Living with an Aspie: So happy…

A rare moment caught on camera while we were just talking. I don’t even remember what about.

So, Spencer has been sick. For most of the month of December he seemed like his was going through one thing or another. As a result, he was acting out A LOT. He handled changes with even less flexibility than usual. He threw fits at the slightest provocation or response in a way he didn’t want. It was a little rough. We honestly were going a little bit nuts wondering where our little boy who had been doing so well had gone.

We’ve figured it out. He was SICK for most of the month of December and he got to totally thrown off of any routine we had had when school let out for Christmas and his uncles came to visit. So, it would seem that all of those thing combined in it a perfect storm for meltdowns and acting out.

We only realized all this after the first week of school finished. To start the week, we moved to an 8am church meeting time, and he did wonderfully well. He is at his most cooperative in the morning. Then, he proceeded to have the most AWESOME week at school. His teachers told me everyday what a good day he had.

We are so happy to have Spencer back, and we are looking forward to continuing to teach him. He didn’t regress over Christmas at all. It was just a reaction to all the insanity that illness and holidays can bring. We are looking into getting him into a social skills class so he can learn more skills and hopefully keep them up over the summer when we don’t have school to count on for his extra practice.

Funny thing about Spencer and photos: To get a smile out of this boy, you often have to tell him HIS knock knock joke.

Knock Knock
Whose there?
Reggie.
Reggie Who?
Reggie Jackson!

Why he thinks this is funny we don’t know, but he thought of it and thinks it is absolutely hilarious.

Living with an Aspie: Primary Programs and routines

This is Spencer helping me out by posing for me. Doesn’t really apply to the topic at hand, but I wanted to include a picture of my silly guy.

We recently had our Primary Program, and boy was it an experience.  It is nerve wracking for all the Sunbeam (3 year old, first timers) parents, but there is a whole other level for us.  So, we had been practicing Spencer’s part for a month!  He learned it the first Sunday we got it, and he had it down.

We would ask him what his part was in the Primary program randomly throughout the weeks leading up to it, and he totally knew it and it wouldn’t be a shock to be asked to say it.  What didn’t occur to us (or at least to me, Jessica) was that when he was asked to go up to the stand, and participate in the program during Sacrament meeting would be a SERIOUS disruption in his routine.  Apparently, we had one that I wasn’t consciously aware of.

When it was time to go up with the rest of the kids, Adam took Spencer with him since Adam is the Primary pianist and had to be there too.  Adam handed Spencer off to his teacher, and Spencer proceeded to meltdown and cry.  I was a little surprised since I had prepared myself for a different reaction completely.  After some convincing, his wonderful teacher got him to sit down by her and distracted him with her cell phone and various other things throughout the program.

Spencer didn’t participate at all.  He didn’t stand up when the other kids did to sing, he didn’t do anything.  When it was his turn to give his part (Grandpa recorded it on the sly), he got up and needed help from the Primary President who was right by him with the script.  And you couldn’t understand a word he said.

He said, “I can be kind to others by sharing the bad guy car.”

After this though, he had gotten a taste of being in the spotlight, and boy he liked it.  After this point, he settled into full on performance mode.  He was up in the front whenever it was time to sing and he lead the music with the song leaders, which is a VAST improvement over shooting bad guys and throwing bombs which he has done in the past.  He also got a little wild and it was terribly difficult for him to want to sit down after that.  Thankfully, his part was at the end (ish) of the program.

I noticed in the week following a rather major disruption of the normal routine (the primary program), he was thrown off in other places.  He had a harder week at school, especially the first day, and he fought with us a lot more.  It just goes to show me how incredibly important all the little routines we have are important.

I always felt like I needed to be more structured at home to establish really set routines, but apparently we have patterns that we follow all the time just to keep the peace.  And if your throw part of it off balance, he has a hard time recovering.

Living with an Aspie: Best. Teacher. EVER.

Spencer has been absolutely LOVING school, which is a great big HUGE relief for me.  In talking with his teacher, I totally understand why.  She has gone above and beyond what we ever expected, and we are so very grateful.  We have been incredibly blessed to find a teacher who is willing to adapt a little bit and take care of my darling boy.  As a result, he’s making huge progress socially and can’t wait to go to school.  This attitude is so contrary to a lot of other Aspie’s school experiences, and we are so happy.

Before Spencer started school I sent his teacher an email about Asperger’s and things that Spencer goes through.  She asked my permission to share some of the information with the other parents and kids so they can understand Spencer and help him.  I was all for it, and said sure.  About a week ago, the parents got the following email:

Dear Families

Wanted to share some information with you about one of the friends in our class.  Our friend Spencer has Aspergers Syndrome, which is part of the Autism spectrum.  (This medical diagnosis has actually been combined with the medical diagnosis High Functioning Autism or HFA)  Spencer’s Mom, Jessica, has sent me some information to share with the parents of his classmates.

Children often come home and tell stories about their friends.  I felt it was important that you have accurate information about our friend, Spencer so that you could help your child with ways to be a good friend to him, as well as everyone else.  We have spoken about Spencer having Aspergers in class and have watched an Arthur episode (season 13, episode 6) that actually does a pretty good job explaining about a friend named Carl that has Aspergers. (This episode is available on Youtube and Netflix, if you would like to watch it with your child again).  However, being preschoolers I don’t know that they will fully grasp what Aspergers means, but they can understand that we are all different and Spencer’s needs are going to be different from theirs.

This is some of the information Jessica shared and ways we are encouraging our friends to be good friends to each other.

People with Aspergers:

— Have good language skills, but they have difficulty telling others how they feel and what they need -(All our friends are working on using our words to tell others our needs.  For example, “When you are finished with that toy, can I have a turn?”  We are encouraging our friends to tell Spencer, “When I am finished you can have it.”)

–Are very literal – may not understand when people are joking or upset.

–May have a hard time listening and taking instruction because they tend to get overly focused on something they are doing (At circle time Spencer may not always join us, he will sit in a chair behind us or at one of the tables – he can hear us better over there.  This can be hard for friends to understand why they are not allowed to do the same.  I just tell them that I know they hear just fine on the carpet square, but Spencer NEEDS to hear better over there.)

–May only talk about their favorite subject (Spencer loves robots and Curious George) – (Most of our friends like robots and Curious George, too, so this has worked very well for everyone, especially at snack time)

–They may want to take part in games or activities, but may not know how to do this.  (We encourage our friends to show Spencer how to do things – several friends are actually very good at this and very patient!)

One last thing to mention, which is a side note from [me] (Mom of child with Down Syndrome)- people first language is very important when speaking of others. [My daughter] has Down syndrome, but she is NOT JUST a Down syndrome child.  There is so much more to people than a diagnosis.  She happens to also be a great dancer, a soccer player, book lover, and a fantastic friend to others. I encourage you to use people first language. It really helps others see past the disability and get a good look at the abilities.

I have been very pleased with how well our class has so quickly become a unit.  Friendships are forming.  We stress that we are ALL friends in our class, we take turns, we respect each other, encourage each other and celebrate each other. Our friends have been very accepting of everyone in our class.  Thanks for your help with encouraging your child to be a good friend to others!  If you have any questions, please ask away!

I was so blown away at how she has handled Spencer in her classroom without disrupting the other kids too.  I know that I would not have been able to handle something like that very well when I was teaching.  I feel so blessed to have found someone who seems to appreciate Spencer as much as I do.  He adds so much to our lives, and I’m glad he’s adding to a classroom as well.

First Day of Preschool!

Spencer started preschool today. I decided it was probable more stressful for me.  I worry about him all the time.

He wasn’t overly excited about it, but he was excited when he remembered he got to go play on the playground.  We got there, and Spencer left me to go to the playground without a backward glance.

He’s never really had issues leaving me, so it’s not something I was surprised about.  I’m actually glad he’s this way, it makes it so much easier to leave him there (it won’t always be that way, but for the most part it will).  Thursday is the long day of his normal weekly schedule.  A nervous day for me to start him on, but that’s when the school started.  He’ll normally do a half day on Tuesday, Wednesday and then the long day on Thursday.

His teacher called me after lunch (because I asked her to) to tell me that he was doing well, but they’d had their moments. I’m so glad we had gone to see her a few days before and get comfortable in the classroom by himself and shared information about his Asperger’s with her.  She was not surprised when he didn’t want stay with the group during circle time or would rather do a puzzle by himself.

She did tell me that he was interacting with other kids, and trying hard, which is really difficult for him.  We are so hopeful that he will get better and learn interact better with his peers.  His teacher is absolutely wonderful and so willing to work with him.

All in all, Spencer’s first day was a good day.  Lets hope with have more good days than less than good days.

Living with an Aspie: Meet My Aspie

This is Spencer. He is 3 (and a few months more than a half) years old. He loves to play with his dad, play with legos, watch Curious George, love on his brother and just be a little (okay, a lot) silly. He also has Asperger’s Syndrome (or High Functioning Autism).

Let me tell you a little bit about Aspergers Syndrome. Aspergers is part of the Autism spectrum, and due to recent changes to the Autism spectrum it is now just lumped in with High Functioning Autism. What makes Aspergers Syndrome (AS)/High Functioning Autism (HFA) different than classic Autism is mostly the language skills. People with AS/HFA have no lack of development in language, but they do have other typically autistic symptoms.

– They find it difficult to tell people what they need and how they feel
– They find it difficult to meet other people and make new friends
– They find it difficult to understand what other people think and how they feel.
– They can have good language skills. But some people with Aspergers syndrome think that people always mean what they say. For example, someone with AS might not be able to tell when someone is joking
– They may only talk about their favorite subject.
– They may be very interested in some things. For example, they may be very interested in trains or the weather.
– They may want to take part in games or activities with other people. But they may not know how to do this.
– They may like to play the same game or do the same thing every day.

We’ve found that Spencer has trouble with all these areas to one degree or another.

He has great language skills (which is not typical of classic Autism) and likes to chat about his most current obsession, which happens to be robots or Curious George. He will answer questions, if prompted to do so. He may not if you just asked him. Often we’ll have to tell him to please answer our questions.

Spencer always means well, but he doesn’t understand how to communicate his emotions and sometimes they come out more aggressively than he really intends. We’ve been working on this, but sometimes it doesn’t always work.

Spencer really does want to play with other kids, but he doesn’t know what to do when he asks them to play with him and they answer. He just doesn’t quite grasp how to play with other kids (and it’s not from lack of socializing and trying). So more often than not, Spencer will find a toy he loves and just play by himself.

He thrives well under a very consistent routine. We’ve haven’t been great at this, but there are things we have to do the same way everyday. It causes him a great deal of stress to have his routines changed. We worry about him when it comes time to start school, but we are doing everything we can to help him make a smoother transition.

Spencer is also bothered by loud, sudden noises, even when his brother starts crying. He can be easily over stimulated in a large room like a gym that sound echoes off the walls. When this happens, we’ve found it best to try to take him out of the room let him go some place a little quieter to relax a bit and then try to bring him back to the group. Doesn’t always work, but we have to try.

Spencer is SUCH a sweetheart, and a great kid to be around. We love him every much, and want to record his (and our) journey through his alien planet.

Living with an Aspie: Rebuttal

UPDATE: This blog post was born out of frustration and pain of being misunderstood.  We’ve since talked with the other blogger, and we now understand where each other is coming from.  We are leaving the post the way it is, because this is not an uncommon response from people when they find out our son has Asperger’s.

Adam here. LONG post ahead. You know that feeling when you are reading someone’s blog or some article on the Internet and think “This person is dead wrong! I must correct them!” (relevant comic) But then you remember that it is kind of a jerk-ish thing to do. So you move on. That is almost always the right approach. I remember one particular instance in which I corrected someone on their Facebook page using not so kind words. I sort of lost a friend that day, and I will always regret it.

Well, I’m here to break the golden rule again. I’m going to correct someone on the Internet. I would have left it alone (I promise!), but the individual decided to use my family as an example to prove her incorrect point and managed to insult us at the same time. I’m not going to sit idly by because I feel the need to, um, provide some additional insight. Unfortunately, the blog’s author is a member of our church congregation. It is possible other members of our congregation will identify my family as the one referenced in the blog (though she does not give names, bless her). I cannot simply let it go unanswered. Full disclosure: The blog post I will reference has a lot to do with alternative medicines and diets. Generally, I have nothing against alternative approaches to health (I hope that is the right way to phrase it, if not I am sorry). My sweet sister does a lot in this field, and from what I can tell, it has helped her and her family quite a bit. I am glad for that and wish them health. Wendy, you and your family deserve every good thing in this world.

All right, back on track. Edit: Her blog has been made private now. Since this post contains no personal identifying information, I’ve decided to leave it up. I think it can stand on its own as an information piece about Spencer as well as a promotion of the strength of unique, individual parenting styles for unique, individual children. I will be quoting sections of the post that I wish to address. I will not focus on the post as a whole because much of it is her opinion on her blog and that is fine. I will pick and choose the sections that deal with my family. The general context of the post is that the author feels that society is becoming more unhealthy and is not willing to do anything about it.