What does it really mean? Part 1

In order to educate others about Asperger's and other Autism Spectrum Disorders I've decided to take the old DSM-IV definitions (DSM-5 ones are online yet) and tell you what it's like from my end. As a reminder, each person with an ASD is different. We all have different levels of abilities and different strengths and weaknesses. Some people have many difficulties in lots of areas of their life and others have just a few...people like me who may surprise you when you find out we have been diagnosed. Just because you've met one Autistic person doesn't mean you've met us all!! So please keep that in mind...what I write here is just from my experiences personally with myself and my son.

Diagnostic Criteria for 299.80 Asperger's Disorder

1. Qualitative impairment in social interaction, as manifested by at least two of the following:

1. 1. marked impairment in the use of multiple nonverbal behaviors such as eye-to eye gaze, facial expression, body postures, and gestures to regulate social interaction

1. 2. failure to develop peer relationships appropriate to developmental level

1. 3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)

4. lack of social or emotional reciprocity

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Many of you who know me probably think I'm pretty outgoing, sociable, and that this really isn't an issue for me. Surprise!! It is a huge issue! My biggest triggers are new/unfamiliar situations, changes, and large crowds. When I first meet you, I might not talk a whole lot, or look at you when you talk to me much. I was taught to be polite always so I generally will smile, return a greeting, return a handshake, and I can even make small talk. However, when you get to know me and I"m comfortable with you...then you get to see the fun...the outgoing, "driven by a motor" me that comes up with the most random stuff at probably the most inappropriate times. In social situations, I always feel like everyone (even strangers) are either looking at me or talking about me. I try very hard in crowded places to not make eye contact with people and aside from the occasional mosh pit, I really don't like being mushed up to people I don't know. I've found that social situations really do leave me with a great deal of anxiety and I've just learned that if I know one's coming, I take a Xanax and keep on moving. I do have some impairments in using body-language, telling when someone's joking with me, and not interrupting others who are already talking. My biggest issue is tone of voice. I guess I'm like a dog, or so my therapist says. You can say whatever you want to me and I'm probably ok with it, as long as it's said in a calm and gentle manner. If you raise your voice, or it gets an edge of anger to it, I will shut down and general either meltdown crying or have a huge outburst of anger back. I also take everything personally. So if someone (ex: a boss or teacher) tells me I'm not doing something right or I need to change something, I feel like a total failure and that they just hate me as a person. It can be the farthest thing from the truth, but once my brain believes it, then it takes a long time to get rid of it if I ever can. I have over 300 friends on FB and if I look through I can tell you where I know each one from. However, when the crap hits the fan, there's only about 5 or 6 that I would call close friends. I've always been that way...I knew everyone, but only had one or two really good or best friends.  Now I just call them my Partners in Crime! I had a hard time socially in middle/high school. I just didn't fit in. I was different, odd and I knew it. I endured teasing just like many other kids, but a lot of what was said back then still sticks with me and colors my self-esteem to this day. As far as the DSM definition goes, I don't have as much of a problem with the lack of spontaneous seeking to share enjoyment. If it's something I'm interested in then you better believe I'm going to talk about it and go on and on and my Partners in Crime will attest to that. I also don't have much issues with social/emotional reciprocity. I will return a smile, handshake, or respond to a comment made to me or a greeting. I can feel empathy for anyone and I can respond generally appropriately to emotions as long as I'm not in the middle of meltdown. Now this doesn't mean I'm throwing a huge party or going to call and ask you to lunch. I don't do stuff like that. I will generally ask my Partners in Crime first if I'm doing something and I want someone to go...and if they can't I may or may not ask someone else, but more than likely I'm either not going or I'll just go alone (which is an issue in and of itself). I think I've come a long way in this area since I was a child, content to play alone (or with my 2 cousins and 1 or 2 neighborhood kids), preferring the company of adults to other kids my age, and very rigid in the activities I did. I bowled, I played piano...that was it. I know I still have work in this area, but it is by far one of my stronger areas. 

Lessons Learned in Disney

Well...we survived our Disney trip this past week. I must say, even though I do feel bad for getting the Guest Assistance Card it sure does make for an easier time. Yes, we don't look like there's anything physically wrong with us and yes we can get on the ride like everyone else....but after a few lines with wait times over 30 minutes...you'll see that maybe we're not like you. And then the meltdowns start and the tantrums and maybe even a few tears. With the GAC we just avoid the issues that set all that stuff off and everyone has a more pleasant day. That includes all our neurotypical fellow guests who don't have to witness us having said meltdown/tantrum...it really is a win, win situation for everyone! It also makes life easier when eating at the amazing Disney restaurants. My son is almost 13, well in the land of Disney, you are put on an adult ticket at age 10!!! This also means that if you're using the dining plan, they must order off an adult menu!! Now, my daughter (so close to the spectrum if she sneezes wrong she'll be on it), will eat and experiment with food. She enjoyed a lovely salmon, several nice salads, and some awesome chicken dishes and great desserts while we were there. My son, (PDD-NOS), thinks that chicken nuggets, nachos (meat/cheese/chips only), pizza, and hot dogs/hamburgers are their own food groups and the only ones he will eat from. With the GAC, he was allowed to order off the children's menu and not have it affect the dining plan. Now, the places still didn't always have something on the children's menu either that he wanted but he could usually get something closer to what he wanted. I think the two best meals I saw him eat while we were there was a plate of spaghetti and meatballs (all made just the way he likes it) at Mama Melroses's in Hollywood Studios and a hot dog of all things at The Brown Derby in Hollywood Studios. Otherwise he always at his fries and would pick at whatever he'd ordered and the boy just doesn't do dessert even though it's part of the plan. And thankfully we finally found bottled sweet tea in the cafeteria of our resort and brewed sweet tea he could fill up his resort mug with...he's definitely a Georgia boy when it comes to his beverage of choice. We also don't stay for fireworks...I love fireworks very much. My son can take or leave them, but he enjoys watching them from a distance. My daughter thinks they're pretty but hates the noise. Me, I love them and the noise, but I can't stand the huge crowd to leave the park after the show which means waiting foreverrrrr on a Disney bus to take us back to the resort. So, we leave before the show and get on a bus with plenty of room and weather permitting hit the pool where we can sometimes hear/see one of the shows depending on which resort we are at (Art of Animation this trip). We actually braved Magic Kingdom and one day of Hollywood Studios in ponchos thanks to Tropical Storm Andrea...and as freaked out by weather as I get...when a tornado warning was issued for Orange County (I had no idea where in Orange County I was to know if it was headed our way), we calmly ducked into Hall of Presidents for the show until it passed, kids were never aware of the tornado warning so everyone was cool. All in all it was a good trip, but I'm still tired two days later not because of the 20 something miles we walked (thanks pedometer app!), but of having all those people all around me all day for 5 days! Sensory overload for sure! We might take a year or two off from Disney, but they've got some stuff being built that's ready to open in 2014....so thinking summer of 2015 (omg...I'll have a 9th grader then!) will be a good time to revisit. And eventually I'd like to do a solo trip or a trip with just me and a couple of close friends...because I can't always eat where I want to and go where I want...and they just won't stand in line because they think they're too old and thus Mom is too old to stand in line and have her picture taken with Woody and Buzz (::: sadness :::). We've found Disney is one of my focus areas and if that escape from reality via movies, shows, or the parks makes life better for me, then so be it. My wallet may not always agree, especially now I've found pin collecting!!