Category Archives: Autism

Vacation Anxiety

479px-Cinderella_Castle

So last week, my family and I went on vacation to Disney World. We drove all the way to Florida from upstate NY, which wasn’t a major deal considering I work midnights and I’m usually awake at night anyway. Then again, it was a near-24 hour drive, so yeah it kinda sucked. Sleeping in the car was no picnic with my kids singing “Let It Go” over and over again for thirteen hundred miles.

 imagesCASMJH11

Yes, I am fully aware that you are one with the wind and sky.

Considering my aspieness, you would think that being on vacation and messing up my normal routines would put me in a bad mood. And yes, I will admit that I end up missing my video games so much that by the end of every vacation I consider bringing my Xbox along on the next one. But it’s actually not that bad for me. I don’t mind being in a weird place because I know that the point of the trip is to experience somewhere new.

The one thing I do really need when I’m on vacation, though, is a “nothing day.” I’m fine with having lots to do on vacation; I just can’t have every moment of every day filled up with activities. If I don’t get any time to relax, then it just feels like work. And when I’m on vaca, bumming around in a cramped hotel room watching non-HD local sports and eating vending machine food is relaxing for me.

youth-hostel-florence12

I am so there.

So, as I said, the family and I went to Disneyworld. I don’t know if you know this, but it seems to be a very popular place to visit. My GOD was it crowded. And it was in the middle of the school year! What terrible parents these people must be, pulling their kids out of school to go to an amusement park! Excluding us, of course.  🙂

Anyway, yeah, LOTS of people. But you know what? I handled it fine. My daughter handled it fine. See, it’s not really people themselves that freak us aspies out, it’s the social interaction that goes with being around people. Most aspies are perfectly fine if they can blend in anonymously with a crowd. That’s what Disney felt like;  it felt like walking through Times Square in New York City – tons of people around, but nobody paying attention to anybody else around them. It was great! We had a great time. The kids really enjoyed the rides and stuff, and my wife and I enjoyed being able to act like kids without looking creepy.

Disney

Shit like this don’t fly anywhere else.

The vacation was practically stress free, except for the Disney germs we all came down with when we got back home. I didn’t expect the most stressful part of my trip would be going back to work and having to talk abou my vacation with my coworkers. But that’s another post entirely.  🙂

Advertisements

I Wish I Was Special

I’ve been busy the past week or two with a whole bunch of stuff. I just came back from a week in Indiana for the Orientation Week of an online course I am taking. I’m taking the course to become an SBB, or Specialist in Blood Banking. Basically, I’ll be learning every single in-and-out detail of my job. Hopefully it will give me better qualifications for promotion or a supervisor job someday, which means more responsibility for not a whole lot more money.

The orientation week was… interesting. The point of the orientation was to make sure we had all the materials we needed to start, as well as to get to know and interact with the other people who are taking the course alongside me.

What, what? Interaction with people? I paid $3000 for this?

WHAT THE HELL WAS I THINKING?

Actually, it went pretty well and I had a great time! The beginning of the week was somewhat awkward. It felt like forced socialization, which I find almost as enjoyable as bathing my eyeballs in rubbing alcohol. But the classroom/learning setting allowed me to kind of settle in and focus on the information rather than being normal. By Friday I actually enjoyed talking with these people, which is good because I’ll be conferring with them on projects and stuff throughout the year.

I think what helped me warm up to these people was that:
a) I realized that these people were interested in and passionate about many of the same things I was. I could talk shop with them and not worry about looking like a dork.
and…
b) Thursday night, the education coordinator took us out to dinner and paid for everything including alcohol, and I got a little buzzed.  🙂

But seriously, I was able to talk to these people because I realized they were like me – nerd-ish people who were interested in advancing their knowledge because they wanted to. And they wanted to be there bad enough that they were willing to pay for it. And talking about work with these people led to other conversations where I was able to actually share (gulp) personal things about myself. And it was fun!

Now the hard work begins – a full year of busting my ass to pass this course. Wish me luck!

Friday Night Anti-Socialite

My daughter goes to an ASD socialization group every couple of weeks. I usually can’t go because I work evenings, but tonight I had off so I was able to go. The kids break up into groups to help foster some social networking skills, and the parents are free to attend a special conference event, usually focusing on some ideas and resources for parents to deal with the difficulties of having a child on the spectrum. I thought it would be nice to tag along with the family.

I’m not so sure I want to go again.

The subject of the conference was helping your ASD child improve their social skills. As the presentation went on, I felt myself getting more and more stressed out. First of all, the presenter decided to go with an interactive format, which threw me off. I didn’t know we were supposed to be answering questions! I was ready to trudge through the boring parts by playing cell phone games. What happens if I get called on? Now I have to pay attention! It felt like I was back in elementary school, without the fun of gym class. And the worst of it is, they are asking questions that I have no idea how to answer. For example:

“What does it mean to you to be social or to have a friend?”

Ummm….

I have Aspergers. I DON’T KNOW WHAT YOU ARE TALKING ABOUT.

As the discussion continues, the parents start offering examples of the difficulties that their children face. Many of these are greeted with chuckles or bursts of laughter from the crowd – probably from knowing all too well what the commenter has gone through. However, I experience a lot of the same issues that are being shared… and chuckled and laughed at. Now I feel like I’m being made fun of. Once again, just like elementary school.

It also bothered me that a lot of the conference seemed geared towards how to “fix” the problems of the ASD child, such as coming up with ways to get the child to socialize and make friends or “succeed” in social situations. This turned me off completely. Is Autism something that needs to be fixed? Am I a failure just because I’m not as comfortable in social situations as an NT is?

My wife says I’m crazy, and that’s not what it’s all about. I agree that I am probably oversensitive due to my unique viewpoint. I just think that parents focus too much on their expectations and what they want for their child. What they should be focusing on is what makes their child happy and help them achieve those goals. If the kid wants to be more social, then helping them along is a wonderful thing. But if the kid is happy playing by him/herself and wants to be left alone, forcing socialization skills on him/her is just a self-serving act to comfort the parent’s anxieties of failure and social rejection.

As if to underscore this theme, the conference ended with the parents breaking up into smaller groups to share ideas and solutions that worked for them. I snuck out the back door before our group formed. Thankfully, and this is why I love her, my wife didn’t force me to stay.

Perfectionism

One interesting trait that I notice a lot of people with Aspergers show is perfectionism. The perfectionism usually goes right along with one of the Aspie’s main “passions” – if the Aspie is interested in doing something, it MUST be done perfectly, otherwise what’s the point in doing it? Note that this is not the same as OCD, although Aspies can show that as well. No, this isn’t excessive handwashing or hyper-organization I’m talking about. It’s the overwhelming need to NOT BE WRONG.

My daughter is having so much trouble with this right now. She has been absolutely tearing through her home school assignments. She’s learning stuff so quickly that she’s now getting deep into Grade 2 assignments even though she is only 7. As she comes across subjects that are more complex, it’s natural for her not to have all the answers right away.

Try telling her this.

When she doesn’t know the answer to a question, she does everything she can to avoid making an incorrect guess. She will whine, cry, overdramatize… ANYTHING to avoind giving a wrong answer. Even after I tell her to take a guess and that being wrong is okay, she still won’t give in. She has had full on, hour long tantrums simply because she could not spell the word “bounce.”

Although my reactions aren’t as extreme, I definitely have a perfectionism issue as well. While it’s an asset professionally (I work in a place that pretty much demands perfectionism), it is a drain on my psyche socially. My perfectionism manifests itself as a fear of looking stupid in front of people by doing something “wrong.” That’s why I’m constantly second guessing my behavior, which accounts for a great deal of my social awkwardness and anxiety.

The good thing is I have learned to cope with my perfectionism to a degree. I’ve learned that being perfect is pretty much impossible, and that my best effort is all I should be looking for. If I’m wrong, so be it, as long as I tried my hardest to do the right thing. In essence: the best I can do is the best I can do.

Now if I can just get my daughter to believe that bullshit.

The Challenges of Being an Aspie and a Parent

As if parenting a child isn’t hard enough…

In spite of my Aspergers, I somehow managed to convince/trick a woman into marrying me. In an even more unbelievable course of brainwashing, I had two children with this wonderful woman. I’ve since learned exactly why Aspies are awkward in social situations – it’s because parenting is EXTREMELY tough for Aspies.

Aspergers makes parenting especially difficult because:
1) you may very well be parenting a little Aspie. Although a genetic component hasn’t been confirmed, autism tends to run in families. As a parent with Aspergers, your chances of having a child on the Autism Spectrum are higher than those of a neurotypical parent. Children on the spectrum can be challenging for anyone; an Aspie vs. Aspie situation is only going to be more intense.
2) children are very effective triggers. My children love to climb on me and use me as a jungle gym. I’m completely fine with it, but someone with sensory issues may see this as an intrusion on personal space. Even something as innocent as an infant’s cry can seem like an assault on the senses to an Aspie.
3) everything can’t be about you anymore. One thing that’s great about being an Aspie is you have an excuse for being self involved – you can’t help it, it’s part of who you are. It takes considerable effort for an Aspie to put the needs of others before their own. But when you are a parent, what you want is almost always irrelevant. Your kids should ALWAYS come first.
4) you have to be in charge of everything. Your child’s doctor appointment, paperwork for school, lunches, setting up playdates, keeping organized… all of it is your responsibilty. People with Aspergers very often have trouble keeping their own shit together. Now you’re in charge of running your child’s life as well. They can’t do it. It’s all up to you. (Luckily, my wife takes care of all of that stuff for my kids… although that leaves me in charge of my stuff, which is hard enough as it is.)

As difficult as it is, Aspergers can also make parenting SOOOOOO much fun! As an Aspie,  I find it easier to relate to my children. I can slide into “play mode” very quickly and just act like a crazy kid and have fun with them. Discipline is also a breeze when you can dissociate your emotions from your child’s responses – “I hate you!” and ” You’re so mean!” hurt a lot less when logic tells you that they are simply lashing out.

But the most beautiful part about being a parent with Aspergers – at least for me – is it gives you a chance to connect with someone almost effortlessly. I sit comfortably in silence with them, talk endlessly about nothing, I gaze into their eyes and feel the love that every parent has for their child… and I am at peace.

My family is one of my very few comforts in this world, and I am truly blessed to have them in my life.

Unseen Health Risks of Aspergers and Autism

In general, Aspergers and Autism do not cause higher risk for health problems. Spectrum disorders are mainly cognitive in nature and do not lead directly to issues such as heart disease, cancer, or things like that. However, I believe that people with Spectrum disorders can suffer from health problems that would be routine for neurotypical individuals. It all comes down to prevention.

Most NTs will not be able to understand this, but nevertheless it is true – going to the doctor can be an overwhelmingly social experience. Think of all the social interaction that occurs during a doctor visit:
– the receptionist greets you
– you are required to provide your name, info, health insurance, medical history, etc.
– the nurse/PA greet you and asks you to describe your condition as s/he enters your personal space to pre-examines you
– the doctor greets you and asks you to describe your condition (again), asking more probative questions as s/he enters your personal space to examine you
– the receptionist handles your billing on the way out

All of this may seem simple to an NT… and yes, it is. But to an Aspie, I can tell you that this is a LOT of work. It’s enough of a hassle to want to avoid the whole thing altogether.

Imagine being an Aspie for a moment, and it is absolute torture to even have to talk to people that you don’t know. Now you are talking to 3 people, revealing intimate details about yourself to them, you are being touched all over. It’s a pain. You HATE it. So you find yourself skipping your yearly physical. You have a little bit of pain in your chest? Shake it off. It’s easier to deal with the pain than to go through that ordeal again. Next thing you know, you haven’t been to the doctor in 10 years and the pain in your chest cannot be ignored. So you FINALLY get yourself checked out, only it’s too late. Now you need heart bypass surgery.

It’s like that. Aspergers didn’t cause the heart disease, but it caused actions that led to the heart disease.

I’ve been thinking about my elbow lately. I have tendonitis in my elbow from repetitive movement at my job. I’ve had it looked at and gotten prescriptions for physical therapy. I really feel like the PT could be helpful in relieving some of the pain, but I stopped going after four visits. Why? Because the physical therapy involves me doing exercises for my elbow for an hour while a physical therapist watches. An hour of me sitting with this guy. After 10 minutes, I have nothing to say. I feel stupid talking, but the silence is even more uncomfortable. So I don’t go anymore. The treatment is more painful mentally than the condition is physically.

I also think back to the post I made about going to the dentist. I’m lucky that I have strong teeth and gums and my gap in seeing the dentist was only about 2 or 3 years. There could be Spectrumites out there who haven’t been to their dentist or doctor in over a decade.

How many of us out there have been skipping cancer screenings because of the sensory issues associated with needles and drawing blood?
How many of us have not had a regular eye exam because of a sensitivity to light?
How many of us are suffering from conditions that can be easily remedied or prevented by easier access to health care?

A Mighty Roar

It can be very difficult for parents of Autistic children to deal with, but this is a fact: tantrums are unstoppable. And in the case of children with Autism, the tantrums are SO MUCH MORE INTENSE.

If you are a parent of a child on the spectrum, I am about to tell you something you won’t want to hear: the tantrums don’t go away with age. I’m a full grown adult (sort of), and I still throw tantrums when I lose my keys.

The good news is that it’s not your fault. You may feel like you are causing the tantrums by either using discipline or holding firm to boundaries, but it’s not that. Sometimes it can be the smallest thing that sparks a tantrum. For me, it’s losing something. For someone else, it can be an uncomfortable setting (too warm/too cold/too loud/too quiet/etc.). Some kids can throw a tantrum over a broken toy. Some can go off because they didn’t get the right amount of chocolate chips on their cookie. It’s different with every Spectrumite.

So, how to deal with the tantruming child? Well, let’s start with what not to do. First, don’t tell the child to be quiet or to not be upset – this will only make the child feel alienated and “wrong” for being upset. Second – and trust me on this – do NOT let them “cry it out.” Tantruming Spectrumites very often get physical during tantrums and can cause harm to objects and themselves. If you just let them get it all out, you may end up with a broken lamp or a broken body part.

The best course of action is to hold the child tight and let them know everything is going to be okay. This is where wrestling skills come in handy. Your youngster is going to fight back; don’t take it personally. But, BE CAREFUL!!! Remember, you are trying to prevent harm, not cause it. So make sure your child can breathe and nothing is bending at any weird angles. Also, do your best to soothe. Speak in a soft voice; tell him you love him, that it’s going to be okay, or sing a lullaby she likes. Don’t expect an immediate response, but it will sink in and they will feel more confident in their bond with you. When your child (FINALLY!!!!!!) begins to calm down (AFTER 19 HOURS OF SCREAMING!!!!!), reinforce the fact that everything is okay, and s/he shouldn’t feel bad about going off.

Tantrums can be scary, especially for parents of Autistic children. But when you know how to handle them, you can get through them with at least some of your sanity intact.