Posautive

Update

2011-05-11T09:13:00.000-07:00

The purpose of this update is to let those in and around Chattanooga, TN who have children on the spectrum know that the group I attempted to start there never got off the ground. I moved about a year and a half ago to Pennsylvania to be with family there. I wanted to start the group while I was still living there, but I didn't think there was a demand for it. I've been getting emails for the past few months from parents looking for information and asking about the group because I forgot to take my information off of the list. I also want to apologize to the parents who sought to contact me for not answering back. I've been extremely busy with school, work, and other activities, and I didn't have the time to devote to answering your emails.

Here is a list of resources for parents of children on the autism spectrum in Chattanooga:
Group for adults on the spectrum
Siskin Children's Institute
TEAM Centers
FEAT of Chattanooga
Autism and Behavior Services
ASSET
Chattanooga Autism Center
Open Doors TN

Hypothesis about autism and evolution

2009-04-02T06:46:00.000-07:00

I've been doing a lot of research lately on evolution, including reading Richard Dawkins' book The God Delusion. Dawkins is a biologist, but he uses his knowledge of biology and Darwinian natural selection to disprove god (he is an atheist).

I got to the part in his book last night where he talks about monists and dualists. In short, dualists are people who "believe" that there is a consciousness that is separate from the brain (like a soul). Monists do not hold this "belief". I put belief in quotation marks because people don't choose which one to believe in. There is scientific evidence that points to this thought being ingrained in a person's mind at birth or a few months after. Natural selection has determined that the dualist point of view is the one that should be propagated because it allows for theory of mind, which aids in social interaction (this is where the autism theory comes in). Autistic individuals are thought to lack theory of mind. There is a lot of speculation surrounding this as to what causes this. There are people who think it's genetic, there are those who think it's caused by something that was recently added to our environment, people who think it's caused by vaccines, etc. There are many hypotheses out there. I think autistic people are people who were born monist instead of dualist. They lack the innate knowledge of a "soul" that most people have. I heard somewhere (I don't remember where, and I don't think it was based on any study) that most autistic people are atheists. If this is true, then it would align perfectly with this hypothesis. They don't believe in a soul that travels to a place after death, so many religions that cater to people who do have this belief don't make sense to autistics. It would also align with the thinking that autism is just another way of thinking, not a disease or a disorder.

As for my own experiences, I can't remember what I thought about a soul when I was very young. I was indoctrinated into christianity as a very young child. I think I accepted that I had a soul because that's what I was told by my parents. I don't remember looking at another person and think that he/she also had a soul, though. I am now an atheist, and deconverting from christianity wasn't that difficult for me. I think it's because I never really believed in a soul to begin with. I was just trained to believe in it. Other people who I've talked to who have deconverted said that it took a very long time and a lot of convincing to be able to do. There are even atheists who have deconverted from christianity who go back to it. Maybe it's because they were born dualists and they can't get past that.

So what do you think of this hypothesis? Is it a valid one? I'd like to hear from autistics on this subject. Do you believe in a soul?

Take that, Mothering magazine!

2008-12-11T11:21:00.000-08:00

For Mother's Day, my fiance got me a subscription to Mothering magazine. It's a magazine about natural family living and Attachment Parenting. I had been reading the magazine for some time and I liked it. The one part that really bothered me, though, was that they kept putting ads and articles in the magazine about how autism is a "disease", perpetuating the vaccine myth, and, the worst part, including information and even ads about treatments like chelation and Hyperbaric Oxygen Therapy. Well, enough is enough. I was able to overlook it the first and even second time, but lately, every magazine they've put out has something nasty to say about autism. I haven't paid the bill because I was putting it off, but then I got a catalog in the mail from Hannah Anderson, a natural clothing company. I had gotten one about a month ago from a natural toy company. Yes, they sold my name. That is another thing that I can't overlook, and is the reason for the nasty email I sent them today:

To whom it may concern,

I am no longer interested in purchasing a subscription to Mothering
magazine. I originally loved the magazine, but, after buying a few
issues off of the newsstand, I found that the magazine has many
problems, including running ads and articles on the treatment and
"cure" of autism. I have Asperger Syndrome, a mild form of autism. To
me and to many other people on the autism spectrum, the notion that
Autism is a "disease" that is caused by vaccines, which has not been
scientifically proven and is a myth that both your magazine and people
who post on your forum perpetuate, is extremely offensive. I am
morally outraged that your magazine would recommend treatments for
autism, such as chelation and Hyperbaric Oxygen Therapy, that not only
do not work, but are very dangerous and even lethal, to the parents of
autistic children. To me, this speaks volumes about your magazine and
the beliefs that the members of the Attachment Parenting society hold,
and it absolutely disgusts me. Add to that the fact that you sold my
name to Hannah Anderson and a natural toy company, which I do not
appreciate. I am boycotting your company, I will tell all of my
friends to stop buying your magazine, and I have discontinued using
your forum. I, however, am happy to pay for the first magazine that
you sent, but after that, I would appreciate that you take my name
from the billing list and from the lists at the places where you sold
my name.

I hope someone from that department writes back and tells of how she's going to kiss my feet, but seriously, is that going to happen? She *might* apologize, but depending on who reads the email, I might be in for a nastier email. Who's to say? I honestly don't really care what they send back. I'm just glad that I was in a position of power over someone who is spreading lies about autism and potentially harming children. I hope that they get the message and stop printing articles and ads that are focused on the "disease" and "cure".

I also want to add, because I know there are people from the Special Needs Forum at Mothering who read this, that I really appreciate that you hold the opinions that you do about autism and don't just choose to side with the status quo of that site. The things that a lot of members of the site, especially the ones in the vaccine board, say about autism really disgust me, and that's a large reason why I'm not posting there anymore. I'm sick of the wars and the controversy over it and how the moderators at Mothering seem to side with the people who say these things, even though they're extremely offensive. I'm really glad to know that there are parents out there, though, who do value their children regardless of neurological status and don't seek to "fix" them. You have my utmost respect.

Update: I got a reply from Mothering magazine. It reads:

The subscription is cancelled, you don't owe anything.

Also, I forwarded this email to the Editorial Dept. for you.

As far as selling your name, yes, most magazines do generate revenue from
their mailing list. We, unlike most, only sell to like-minded companies
whose products we think our readers would appreciate. All you have to do is
to tell us and we will gladly remove your name from the list.

Happy Holidays

If I get a response from the Editorial Department, I'll post it here. My email might even be in the magazine, but I kind of doubt that would happen. It would be awesome, though, even though I probably wouldn't be able to see it because I'm boycotting them. Maybe I'd just buy that one magazine for the letter. That is, IF I get in the magazine, which is highly unlikely.

A cool experience

2008-12-10T23:25:00.000-08:00

I wanted to post this even though it's not about autism. I went to Target today and the lady at the check-out was deaf, maybe even Deaf. Deaf with a capital D is different than deaf with a lower case d in that anyone can be Deaf without being deaf. It's about being part of the Deaf culture, and a big part of that is using sign language as a primary means of communication, which is what she did. At first, I thought she just had laryngitis because she would gesture but not sign. Then I thought, "Hmm, maybe she's nonverbal?" But then when she was telling me the total, I noticed she used sign language to tell me how much it was. I think she did that because I helped her get the attention of someone who left their purse behind. She seemed really grateful and I was glad to help out. She said thank you, and even though I was too flustered to do any of the rudimentary sign language that I do know, I think she could read lips or at least tell by my expression that I meant well. I thought it was so cool to see a deaf person not only working around people (I don't really see deaf people often) but also using sign language even though most people would probably not understand it or think she was rude for not trying to speak. To me, that seemed extremely brave and makes me think that she's part of the Deaf culture. I was also really surprised and happy that she was able to work at the check-out instead of having to stock shelves or do other work that most people with difficulty in a certain area stereotypically do. It was great to see a person who you would think would have a bit of difficulty doing the job out there doing it and doing it well. Most deaf people that I see, usually on TV, attempt to speak while they're signing. I noticed, too, that she didn't sign for the other person but she did for me. It made me feel really special, like she knew that I understood her in a way that most other people wouldn't. It was a really cool experience and it definitely made me want to learn more sign language. I may also call the manager of that Target and give her a compliment.

Allergies and toddlerhood

2008-11-25T15:09:00.000-08:00

Sorry I haven't been able to write lately. I've been dealing with my 11 month old son's food allergies and I've been chasing after him because he's learned how to walk. Toddlerhood is interesting so far and he's not even two yet. Heck, he's not even a year old yet! The only autism-related thing I have to blog about is that I've applied for a part-time job as a paraprofessional. I'm not sure if I'll get the job or not but I hope so.

Autism: the Musical

2008-09-25T21:53:00.000-07:00

The first time I saw an ad for this movie, I thought it was quite possibly the dumbest idea ever. I had no idea what the movie was going to be like, but my first thought was, "Oh my God. What will they think of next?" It was even worse that I came to find out that the movie is supported by Autism Speaks. After that, I decided that I would never watch it. Well, I have seen it, and it's a great movie. Some people on a forum I read started a thread on it saying that it was a good movie and I watched it. Now, it's by no means perfect, but it is a very good movie nonetheless.

Autism: the Musical is a documentary about The Miracle Project, a program in California started by Elaine Hall to teach kids on the spectrum and their siblings about acting. It follows five autistic children as they prepare for the musical that Coach E, as Elaine is called by the kids, is planning to put on for the parents. The spectrum is well represented by the cast. There is one kid who is nonverbal (Neil), a teen who communicates primarily using echolalia (Lexi), an Aspie (Henry), an autistic child with savant talents in music (Adam) and a kid who I'd describe as PDD-NOS who has sensory issues and seems to have more social intuition than the other kids (Wyatt).

The story starts out with Elaine talking about when she adopted Neil from Russia. She recalls how he finally received the diagnosis and that she started him on Floortime therapy. She learned to first go into his world by letting him take the lead while playing. Then she got some actors to come to the house to do the same because they were fine with doing things that were kind of eccentric. Slowly, he started to interact more with Elaine, which is how she got the idea to start The Miracle Project.

If you've seen Autism Every Day and are thinking that this movie will be exactly like it (like I did), please be assured that it isn't. A lot of the kids' parents are really cool. When Elaine explains what autism is, she covers the entire spectrum. She doesn't say that it's a disease; she says that it's a neurological disorder that affects the way kids think, and that autistic kids' brains are "wired differently" than typical kids' brains. Lexi's mom was kind of devastated at first and wasn't very accepting, but now she's learned to accept her daughter. She says at one point in the movie that the reason for all the negativity toward autistic people is that they aren't valued, and that it's a civil rights issue, which I thought was awesome. Adam's mom, dad, and aide at school, though, are not at the point where Lexi's mom is, unfortunately. At one point in the movie, the aide is talking about how the girls in Adam's class seem to like him and she says, "If only he wasn't autistic, he'd have so much more potential." She says the word "autistic" in such a nasty way. It was just disgusting.

What I loved was seeing the kids' talents and how they learned to cooperate and interact with each other. I also loved seeing the parents and how they started to accept their children and see that, although they have difficulties with certain things, they have awesome talents. Lexi is an awesome singer and her mom was crying when she saw her sing in the musical. I think it really helped her to understand that while Lexi may not be at the same level with her peers in a lot of ways, she's a lovely young woman and she has a lot of talent. Adam played Twinkle Twinkle Little Star on his cello in the musical and his parents got a kick out of that. At the point where this was filmed, they were having a lot of difficulty accepting that Adam is just Adam. His mom referred to autism as a disease. I really hope that seeing the kids in this program has started something in them where they can understand that autism is just another way of thinking.

Despite the support from Autism Speaks, I really recommend this movie. I've seen it a few times and it's just a really awesome movie. You can get it on NetFlix and it might even be at a library near you. Please just give it a chance like I did. You'll be pleasantly surprised.

Hyperlexia, splinter skills, and savant syndrome

2008-09-24T12:53:00.000-07:00

What do these three things have in common? They're all examples of how psychologists can take skills that would be praised and seen as talents in a typically developing person and turn them into further evidence of a problem in a person with an ASD.

I have hyperlexia. I didn't know that that was a diagnosis when I was little, and my mom didn't know, either. She just knew that I could read at a fifth grade level in first grade and she praised that. That was my talent. It made me feel confident and gave me self-esteem. I also have echolalia. Just like with hyperlexia, neither of us knew that there was a such thing, and that both of these are indicative of Asperger syndrome. My mom just thought I had a good memory for remembering certain TV shows and she thought it was really cool that I could remember the entire script of a thirty minute show from beginning to end. If I had a psychologist telling me that these things were indicators of Asperger Syndrome and equating them to a problem, I probably wouldn't have taken such pride in them while growing up. It probably would've taken away a lot of my self confidence and I hardly had any while growing up. I was bullied constantly; at school, in the neighborhood, and sometimes at home. I didn't have any coping skills that were socially acceptable, so I would blow up at my parents and my sister and get in trouble.

These same things are true of people who are more on the Kanner's autism side of the spectrum. The skills that they might have, such as math, drawing, etc., are sometimes referred to as splinter skills. To me, "splinter skill" is a euphemism for "freak accident". The child isn't really supposed to be as adept as he is at this skill because of his impairments, so it must be another symptom of his autism.

This also occurs in savant syndrome. I was watching a video on YouTube of a blind and autistic teenager whose "savant skill" is playing the piano. He was brilliant. Being able to play the piano is already amazing to me, because I can't do it, but it would be much harder for someone who can't see the keys or read a music book. Of course, though, people had to make comments like, "Yeah, he's good at the piano, but he's still retarded. Don't praise him. It's not worth it." Some of the comments were much worse, but I won't put them here. People watch documentaries on Kim Peek, who can remember every zipcode in a state, remember all the royalty of England, and tell what day a certain date fell on or will fall on. He also has agenesis of the corpus callosum, which is, specialists say, where he got these talents. He has trouble with life skills and still lives with his father, so while he may be exceptionally brilliant, and people may envy that, people can also look at this difficulty and instead of recognizing that it's okay to have this difficulty and also admire his talents, they might say, "Well, I'd much rather be normal than a retarded genius." People can use this to pity him, poke fun at him, and ultimately dehumanize him.

Why can't we see these as talents and take pride in them? Why do they have to be pathologized in kids on the spectrum when in other kids they would be celebrated? These talents bring self worth and confidence to kids who get that taken away daily by bullies and people who underestimate them because of their shortcomings. Why can't they have something to be good at and take pride in, just like every other child does?

Person first language

2008-09-23T17:10:00.000-07:00

I've been thinking lately about person first language and how it relates to disabilities and autism spectrum disorders in particular. I'm not one to agree that the phrase "child with autism" sounds better than "autistic child". I've heard that person first language was started because people need to remember that people with disabilities are people first and that a diagnosis is only part of a person. I agree with that, but I also agree with the autistic/disabled person's point of view: a disability is part of who I am and it can't -- and shouldn't -- be taken away.

Another thing to think about with person first language is parts of speech. Words like "autistic" and "disabled" are adjectives, and adjectives describe nouns. If a person has been diagnosed with an autism spectrum disorder, it wouldn't be incorrect to use "autistic" as an adjective for that person. To fully understand this, you need to take it out of the disability realm altogether. Let's say that you are talking about a child who has exceptional talent in the field of art. Would you say that that child is artistic, or would you say that "the child has an exceptional talent in the field of art"? Both of these are used to describe the child, but one is a little more labeling than the other. On the other hand, the former sounds a lot less pedantic, as is the case with "child with autism". I saw one video that is used to teach elementary school children about autism and they never once used the phrase "autistic child". They always said "children with autism". And autism experts frequently say that we're the ones who sound pedantic! As Rick Lavioe often says, "Circle the slow learner in this scenario." At the end, there was a follow-up where the kids were repeating what they learned. There was about ten sentences all beginning with the phrase, "children with autism." It got so tedious I ended up stopping the tape then and there. So while person first language can be positive and may be considered more politically correct, it can definitely be overdone.

Getting back on the subject of parts of speech, though, I would much rather hear an adjective or a phrase used in place of a noun. Examples are: child with Down Syndrome rather than "mongoloid", developmentally/mentally delayed or "has a developmental/mental delay" rather than retarded or "retard", etc. That's where I find much of my person first language comes into play. One word I've always had trouble accepting as a term is "mute". Mute is a setting on your TV. It should not be an acceptable way to describe how a person does or doesn't communicate. I prefer nonverbal because it implies that the person may be able to communicate in other ways. An older and somewhat politically incorrect word that doesn't bother me, though, is "slow". I wouldn't use this word to describe people with more serious cognitive impairments (actually, I don't use it to describe anyone), but, for me, it might be slightly acceptable when used to describe a child with a learning disability. "He's kind of slow at learning to socialize with other kids, but he'll get the hang of it." This, however, should be paired with the realization that the individual might eventually learn this skill, but it will take a lot longer and it will take a lot more effort than it would for his "typical" peers to learn the skill, and that the learning disability will never go away even when he does master the skill.

The argument over whether to use person first language over disability first language is one of those things that is never really talked about, but when it's brought up, it creates a minefield of an argument. Hopefully, parents, educators, and disability advocates (and self-advocates) can put this aside and concentrate on what's important: building a society that values everyone, disabled or not.

Paralinguistics

2008-09-21T16:06:00.001-07:00

Paralinguistics refers to nonverbal communication, such as body language, eye contact, facial expressions, etc. People who are autistic have problems with picking up on social nuances and that's why we have trouble in social situations. We don't pick up on it just by observing it; we have to explicitly remember to look for these signals and learn what each means. The effect is much like what speaking to a native speaker of a foreign language would be to an NT. This is because, essentially, nonverbal communication is a foreign language to autistic people. We have to remember what certain facial expressions mean much like a Spanish student needs to remember vocabulary and grammar. In order to learn that, it needs to be spelled out to us like it is in a Spanish textbook. There are great ways to learn this, though, if you have trouble. I've been reading some books on etiquette. They're like textbooks in that they break everything down so you can understand it and they also give you ways to apply the new skill. Another way you can pick up some tips is to find clips of public speakers to watch. For example, you could find clips on YouTube of Barack Obama. He's a very good orator and has good stage presence and body language. It's easier for people with problems in this area to watch it with the sound off so they won't focus on the words instead.

In the same vein, a suggestion that I read in a book written by a special needs educator to help with learning paralingustics is to watch a segment of a show or movie without sound and try to guess what's going on in the show just by watching the people's facial expressions and body language. I tried this and it worked really well for me. I do this most often with a show I like called Boston Legal. I found a clip on YouTube where one of the main characters is in a confrontation with a man holding a gun. When I watched with the sound off, I could tell by watching the armed man that he was too scared to shoot. His hands were shaking, he was looking around instead of looking straight at his target (he even looked behind him to make sure no one who could overpower him was coming), and he almost seemed like he was trying to pull away from the situation but was stuck. But instantly when I turned the sound on, the verbal part of the conversation started to take over, as it usually does. I had to struggle to remember to keep track of what I had noticed before to see if the words matched up with the body language. At one point in the clip, the armed man is talking to the police who are trying to negotiate with him and he says, "If that phone rings even once, I'm shooting." I took him completely at face value at first, but then I remembered what I had seen when I had the sound off: he was unsure of his actions. He didn't really want to shoot. That little bit of information made it very clear to me that there is a lot more going on under the surface of words than I had ever realized before. It was like only ever seeing the surface of a lake and then one day putting on goggles, dipping my face in, and seeing an entire ecosystem that I never knew existed.

Now I really believe it when I read in books that language is only 7% verbal and 93% nonverbal. It also makes me realize how much I miss out on in social situations and, also, why people consider ASDs to be disabilities. The lack of social intuition really can be disabling and, in some cases, it can get people who are not privy to these nuances into a lot of trouble. A misunderstanding with the wrong person can get you into a fight, fired, or even killed. A great tool I've recently found in learning this are the books and follow-up DVDs done by the SN educator I mentioned earlier: Richard Lavoie. He spells out in his presentations what social problems kids with difficulties with social skills have and how to help correct them. He's a great source to check out to get on the path to teaching paralinguistics to a child or learning it yourself.

Self-esteem and poker chips

2008-09-14T23:05:00.000-07:00

I recently saw a great presentation on DVD by Rick Lavoie called When the Chips are Down. Rick Lavoie is a special needs educator and he has a lot of insight into the minds of people with learning disabilities and why they do what they do. Most of this DVD is about discipline and children with learning disabilities, but at the end, he talks about building self-esteem. He made the analogy of self-esteem and poker chips and stated that, many times, kids with learning disabilities have very few poker chips. This was definitely true of me. Autism spectrum disorders have a component to them that is, essentially, a nonverbal learning disorder, so I could definitely identify where he was coming from when he said the things he did.

He started off by telling the story of Joe Cool, a "typical" kid -- the kind of uberkid who is the quarterback of the football team, prom king, all of that -- and how he has tons of poker chips. Then there's Larry the Learning Disabled Kid, who only has a handful of poker chips. Because of the inclusion movement, both of these kids attend the same school and have to compete in the world alongside each other, which he said didn't seem fair, and I agree. As someone who had very few poker chips in high school, I concur that it's not fun to have to compete with kids who have baskets and baskets of them. He furthers the illustration by getting someone from the audience and telling them that they have to play poker with him, but they only get 25 chips and he gets tons of them. The volunteer says that he doesn't want to play, and Rick says, "That's just like when our kids say, 'I don't want to go to school, Ma. I have a stomach ache.'" But, of course, he has to play the game just like a child who is enrolled in school has a legal obligation to attend. He asks the volunteer how he would play, and the volunteer says he would play recklessly. That fact gave me a lot of insight as to why some of my peers in school made very reckless choices, like purposely getting into fights and attempting suicide; they didn't have anything to lose, so they figured they'd gamble it all. I'm one of those people who played conservatively, just handing out one chip at a time. I wasn't a kid who went to school dances or did much outside of school. I didn't really go over to other kids' houses or socialize. I'd go home and go to the library to go on the internet or check out a bunch of books and movies. That's how I dealt with having low self confidence in school: I avoided a lot of what made school fun.

How do you help the child in your life who has only a few poker chips? The answer is simple: give him poker chips. Kids who have a lot of poker chips are kids who have good things happen to them. A large part of being a parent or teacher is to make sure that every kid you work with on a regular basis has more poker chips when he goes to bed than he did when he woke up that morning. In order to do this effectively, you need to keep three things in mind: 1) give as many poker chips as you can, 2) only take away as many poker chips as you need (and give some back, as well), and 3) be prepared to go to the mat with anyone who takes away your child's poker chips and doesn't give any back. You could give a child all the chips in the world, but it wouldn't matter a bit if he repeatedly gets them taken away by the bully on the bus who shoves him and calls him a "retard", or gets them taken away by a parent who is too harsh in disciplining him. That's why you need to be an advocate for the child in your life who has little confidence in himself.

Eating an Artichoke: A Mother's Perspective on Asperger Syndrome

2008-08-01T05:03:00.000-07:00

Since I've been trying to stop being on the computer so much, I've gone to both the lending library at a local school for children with "disabilities" and to the regular library and I've checked out and read a few books on autism. One I've finished recently is Eating an Artichoke: A Mother's Perspective on Asperger Syndrome. This book was written by Echo Fling, who is now the president of ASPEN of America. I've used her website to try to find services in my area a few times and, while it's not complete, it's a great service for parents seeking support services and therapies for their autistic children.

This book was interesting because it kind of helped me to understand where my mom was coming from when I was at the ages where her son, Jimmy, was as the book progressed. It begins with a parent-teacher conference where the teacher tells the author that she suspects that something is wrong with Jimmy. He had been pushing and hitting other kids in the class. This starts a huge journey in trying to get a definitive diagnosis for Jimmy. He starts out with a diagnosis of auditory processing disorder, then ADD, and finally, near the end of the book, after countless doctor visits, he is diagnosed with Asperger syndrome. This occurs in the early to late 90s when Asperger syndrome was first introduced to the DSM IV, around the time when I was growing up. Unlike the boy in the story, I was not put in special education classes because I didn't have any speech delays, so our experiences differ in that regard, but otherwise, Jimmy and I have a lot in common, so it made the mother's point of view easier to latch onto.

At first, she considers Jimmy to be a brat and treats him as such. She yells at him and gets frustrated, like my mom would, and it seemed to be over the same things: watching the same tape over and over, being pokey and slow while putting on clothing, rigid adherence to certain rules, etc. Then, when she realizes that there might be something going on with him, she starts to become more sympathetic. Unfortunately, this didn't happen with me until I was about 16 years old, so I didn't get the benefit of having understanding parents until then. It made me realize, though, that my mom really didn't know what was going on with me and wasn't trying to get frustrated with me on purpose. She really did think I was being a manipulative, spoiled kid. She didn't know that I had certain sensitivities and stuff that I couldn't really control, and, at that point, I didn't know how to explain it to her. It was a very different perspective than I'm used to when it comes to autism and I'm really glad that Mrs. Fling decided to write this book. I recommend it, especially to those autistic people out there who, like me, didn't understand the place that their parents were coming from and want some understanding in that regard.

Thinking of writing a book -- any suggestions?

2008-07-25T09:29:00.001-07:00

I've been thinking about writing a book about autism. It could be a fiction book, which would be aimed at teens/adults and the main character would be autistic, or it could be for/about adults, because that demographic isn't represented very well. I read Born on a Blue Day and I'm reading a book by Temple Grandin and I like the style of writing where it comes from an autistic person rather than from a psychologist. This blog is aimed more at parents (or anyone, really), who want to understand how an autistic person's mind works, and I want to write a book that does that. I make it my mission in life to help parents to understand their autistic children because I was misunderstood as a child and teen, and I want to prevent that from happening to another child. Does anyone have any ideas on what this book should be about? What types of books would you like to see more of on the market?

Sick...

2008-07-13T10:44:00.000-07:00

The reason I haven't blogged in quite awhile is first, we were on a trip visiting my relatives for a week, and then, the day after I got back, I started to get sick. It started out as a little sore throat but about 3 days after that, I felt like I had been run over by a car. It was awful. Then, of course, the day after that, when I'm feeling a little better, my 7 month old and husband get sick. Lovely. We're all doing significantly better but we still have coughs. I also can't think of anything to blog about. I'll be putting on my thinking cap, though, and hopefully I'll be writing a real blog post soon.

My mage is autistic

2008-06-20T12:27:00.001-07:00

I've been playing a game called World of Warcraft a lot recently. As I get further into the game, I'm starting to encounter quests that require some assistance from other players. I'm not really a teamwork type of person. Lots of autistic people aren't, mostly because of the social aspect. I would rather do a project on my own than with a bunch of people. With WoW, though, sometimes you encounter groups of 2+ enemies. When this happens, I zone out. I know I should be doing something but I end up doing nothing. Here's the inner dialogue I have running through my head when this happens: "Oh, crap, I aggroed three people. I should attack them. Which one should I attack first? Ack! I'm losing a lot of health! (Usually, by this point, I half-heartedly try to attack one NPC with a fireball.) Okay, running away now..." then sometimes I get away and sometimes I die. Yeah, it's not good. I do this IRL, too. (Well, not the fireball part...) I used to do it a lot when I would play sports. Things are just moving too quickly for me, I don't go in with a plan (or I do go in with a plan but the plan gets ruined) and I end up blanking out and doing nothing because I don't know what to do. I am working on it, though, and this game is really helping me with that. It's also helping me understand the value of teamwork and is, to some extent, helping me with socialization.

I've read quite a few articles touting the benefits of certain video games have for autistic players with regards to learning social skills. The one game that I heard quite a bit about was Second Life. SL is a game where you pretty much just socialize. You can buy land in the game and build a house and other things there. MMORPGs (Massively Multiplayer Online Roleplaying Games) like WoW, though, can serve the same function. If one chooses, he/she can join a guild, join groups in-game to go through certain areas/help with quests, add friends, all kinds of things. There are even groups on Facebook and MySpace devoted to WoW and social networking sites just for WoW users. Games like WoW and SL provide a safe place to learn about social interaction. Autistic individuals tend to communicate through text (email, SMS, IM, forums, blogs, etc.) rather than on the phone or face-to-face, and these games provide that. With regard to WoW, there are certain clear-cut rules and protocol when interacting with other players and that is spelled out in books and forums devoted to the game. You don't necessarily have to be in a group, either, so there's no pressure to socialize, which makes it that much easier. There's also an anonimity to it. If you act like an idiot or do something particularly weird either accidentally or on purpose, you don't have to worry about seeing that person again. You can just ignore them.

With the fairly recent influx of video games that have networking capabilities, which includes certain Nintendo DS and Wii games and X-Box Live, it seems that more autistic people are able to be connected to others while playing their favorite games, giving us more opportunities to "socialize" while in the comfort of our own homes and not actually having to see and talk to people. This provides an excellent base for learning social protocol. I don't know if this was a primary goal for the people who thought up these games and consoles, but it's a great secondary goal.

The War on Autism?

2008-06-13T03:56:00.000-07:00

Why do we have to wage wars on so many things? It seems like in this country, we're always fighting a war on something; the war on Iraq (and a possible war on Iran), the war on drugs, the war on childhood obesity, and now this war on autism. And if it sounds incredulous to you that there could possibly be a war on autism, just look at the names of some of the organizations that are on the front lines. Defeat Autism Now! and Generation Rescue are two such organizations that readily come to mind. If you think about it in terms of a war, such as the one we're currently fighting, it makes sense, in a warped, twisted way. In this illustration, autism is seen as the "enemy". The organizations that are fighting against it are like the armed forces, with the volunteers and parents of autistic children who choose to fight autism as soldiers. The autistic children are the "victims" in all of this. The dissenters of the war are "unpatriotic" to the cause, just like in the Iraq war (and pretty much every other war ever fought). There's even a bill in Congress that states that we're waging a war on autism.

WTF? Why the need for so many wars, especially since the one we're currently fighting overseas is so unpopular? Wouldn't you think that people would understand by now that fighting wars on things isn't the best idea? There's a trend with wars: they end up being huge wastes of money and resources, nothing particularly good comes out of them, and they leave a lot of destruction in their paths. I don't see this war as being any different. Maybe this war will go the way the one in Iraq has gone. We'll find out that we were duped and that there's no Weapons of Mass Destruction, whatever the war on autism's equivalent of that might be (vaccines, perhaps?), and the organizations that are waging this war (namely Autism Speaks, who I see as the George Bush in all of this) will become unpopular. Maybe people will be calling for Autism Speaks' "impeachment" and we'll be looking for a Barack Obama. I almost hope that this war on autism parallels our own war just so that could happen. Yet, it does sort of shock me that there's a war on autism in the first place. It's insulting. It's comparing autism to something potentially dangerous and deadly, like the Taliban. Autism isn't deadly. No person has ever died from autism and they never will. What they're planning to do, though, with a prenatal test for autism, is eugenics.

What really grabs me, though, is that even with this current fiasco of a war going on, people eagerly sign up for another one. Even our own Congress, which has a liberal majority, got on the bandwagon. I'll bet you that some of the parents contributing to the effort have gone to anti-war protests. That's another thing that puzzles me. You'd argue that people aren't being killed, but they are. Children have died in this war; from chelation, from being restrained improperly, even by their own parents. Then, if this supposed prenatal test is developed, more potential autistic people will die. How many more people have to die? How many more people have to be marginalized until this war comes to an end? Maybe we have to start taking hints from the dissenters of our own messed-up war. So, anyone want to organize an anti-war protest? Our own march on Washington, perhaps?

Where do I belong? or The Asperger's identity crisis

2008-06-12T12:00:00.000-07:00

I had a very odd dream last night (actually, this morning -- my schedule got all screwed up somehow). I don't remember all of it, but the part that stuck out to me was that I was still in high school and I rode a special education bus to school. (I rode the regular bus to school while I was in high school, by the way.) I got on the bus a few times in the dream, but one time I got on, there was this girl who I had never seen get on. She started talking to the driver. I think she was in journalism class and wanted to write an article about the special education kids. She walked over to me and tried talking to me, but she talked in a condescending and even babying manner toward me. Then I told her that I was in honors classes, which I was in high school, and she gave me a dirty look and moved on.

This dream is a perfect representation of the confusion I had after I got my diagnosis. Before, I was just smart and quirky. I lived in a rural area before and I didn't fit in, mostly because I was too smart (probably interpreted as snobby) and tomboyish. When I moved to a suburban area, I fit in a bit better, but I am very introverted and I don't feel comfortable seeking out people. I tended to gravitate toward either kids with mental illnesses, kids who were younger or kind of immature for their age, and the Goth and druggie kids. I was in honors classes, so hanging out with the latter group was considered weird because honors students are stereotypically high-achieving, goody-two-shoes kids. I never did anything to get into trouble, they just seemed (almost ironically) to be much better people than the honors kids. They were a lot nicer, more accepting, more tolerant, and more pleasant to be around (for the most part).

Anyhow, I was diagnosed when I was in 10th grade. I was in health class then, and it became a perseveration for me. I would read the book in study hall and at home for enjoyment. It became a mission for me to get 100% in the class and stay at that percentage. That's how sucked in I was. We had to do these things called current events every week where we would go on the net and find a news story related to health and print it out. I was talking to my token friend in the class and, for some reason, we got on the subject of autism. I was joking that I was probably autistic (it was a joke rooted in truth, not joking about autistic people) and so when I went home, I asked my mom about autism. She then told me that she had always thought that I had autistic tendencies, so I started doing research on autism. That's when I found Asperger syndrome. I read all of the criteria for diagnosis and it fit me, so I asked my mom if I could get diagnosed. I went to a specialist and received my diagnosis.

I was fine for awhile, but then the next year, I got sick from babysitting a child with pneumonia and my dad also had to go to the hospital, and for some reason, those two things really screwed me up. My autistic behaviors got a lot more pronounced. I would wear a coat all the time and I wouldn't take it off for anything, even if I was in the classroom. I was barely able to focus on schoolwork and I would sometimes have what I think were panic attacks in class and have to go to the nurse. I was really angsty, even more than typical teenagers are. During this time, I wondered where I belonged. Did I belong with the other honors students, or do I belong with the special education students? Then I tried to hang out with the special education students at lunch. It turned out to be a giant fiasco. I ended up trying to get services (not academic services, because I had good grades, but maybe social therapy and some type of agreement worked out where I could leave the class if I was starting to feel panicky) and they essentially laughed at me. The "specialist" they had on hand, who was marketed to me by the paraprofessionals as some kind of genius, told me that I didn't have Asperger syndrome; I just had trouble fitting in. She said I had great eye contact (yes, I do have good eye contact in a professional setting, which I considered that to be, but in a social setting I do not), I had good grades, and I was in marching band, so I was obviously social. (Yeah, right.) She also said that a student with AS would never go over to a table where they didn't know anyone and just introduce him/herself. In short, she didn't really know anything about Asperger's. She did offer me a chance to help out with the students in classes, but I didn't want to be there as a helper, who was above them, I wanted to be with them as an equal. The entire experience really deterred me from getting to know the special education students at my school.

I still have a difficult time trying to figure out where I fit in. As a mother, I was pretty much handed a permanent membership card to the mothers' club when my little guy was born, but other than that, I don't really have a group. There's a support group for autistic adults in my area, which I attended once, but I don't know if I can again because little guy's got some separation anxiety stuff going on. (We're working on it.)

It's hard to be an honors student with a developmental disorder because you don't fit the mold. People can't look at you or your grades and see that you do indeed have that developmental disorder, like autism, so they deny that you have it, even if you have documentation. It's a struggle that I suspect lots of kids, especially Aspie kids, have to go through, and it's really tough.

Autistic children are not missing

2008-06-10T06:33:00.000-07:00

I finally started looking at some of the pictures from the Green Our Vaccines march on Washington. I knew it was going to upset me, but I did it anyhow. I already knew what most of the pictures would contain: signs that tell about how their children were made autistic by vaccines and before and after pictures of kids who were "cured" of their autism, but this picture really stuck out to me and made me sick. (It's in the slideshow. It's in the 12th row from the left and the third picture down. It's of a mother holding her smiling little boy and on the back of the shirt it says "Missing" and it has his picture and the date of when he was first vaccinated and when he was "lost to autism". I was going to post it here but decided not to because it's on a slideshow and I didn't know if I had rights to post it or not.)

How could any parent do that? How could any mother who says that she loves her child wear a shirt like that, especially while holding her precious, smiling little boy in her arms? There are children who really are missing, who are on milk cartons and fliers asking, "Have you seen this child?" There are parents who go to the mainstream media hoping that someone will find their child. There are children who are taken from their parents and raped and killed by disgusting, sick, horrible people, and you have the sheer audacity to wear a shirt that says your son is missing when you're holding him in your arms? To me, the statement cheapens all of the feelings of sorrow and despair of any parent who has truly lost their child. Under the picture on the shirt, it has the dates of when the boy got his first vaccine and when he was "lost to autism". I'm not sure if she was going for this or not, but it was reminiscent to me of the birth and death dates on tombstones. This image absolutely disgusts me. Why do people feel that they can do this? That they should do this? Why would anyone think that this is okay and even encourage this? These children are not missing! They are not dead! They are very much here and alive and they need the love and care of their parents, not parents who take them to get potentially fatal treatments to "cure" them and hold up signs declaring to the world that they are not there!

This is exactly why I made this blog: because there are people out there who feel this way about autistic people, that they're dead, soulless, disgusting, a drain on society, worthy of ridicule and not worthy of life and respect. When people finally understand that autistic people are deserving of the rights and respect that are afforded to every human being on earth and that they can and do live full, happy lives, maybe then I can hang up this blog. I pray for a day when I can do that. But when I see images like this, I wonder when that day will come, and if that day will come. Parents of autistic children, your children are not dead. They are not missing. They are living, growing children who need your love and care to grow into loving, happy adults.

The autism "epidemic"

2008-06-09T16:11:00.000-07:00

The number of individuals who are diagnosed with an autism spectrum disorder has been increasing. (Note: this fact is neither positive nor negative. It is merely a fact.) Despite what Autism Speaks and other autism "advocates" and the mainstream media has been touting, however, it is not an epidemic. The definition of the word epidemic is, "an outbreak of a contagious disease that spreads rapidly and widely." By this definition, the increase in autistic individuals can never be called an epidemic. First of all, autism is not a disease. It is a neurological disorder. They are not even in the same ballpark. One can die of a disease, however, one cannot die from a neurological disorder. Second of all, autism is not contagious. This is because autism is not a disease. Not only is it frustrating and offensive to me and to other autistic people when people refer to autism as a disease and an epidemic, it can never accurately be portrayed as either, so if anyone refers to it as such, they are wrong.

Lots of people have been contemplating why there are so many more people, especially children, being diagnosed with autism. It makes sense to a lot of people to step back and think, "Well, what's different about how things are now compared to how they were before?" The next step in this train of thought is to speculate that it's caused by either something in the environment or something that was invented rather recently, like Wi-Fi or cell phones. Autism isn't caused by any of these things. The reasons for the increase in children being diagnosed is that the diagnostic criteria for autism has been expanded and because people are more aware of the signs of autism.

Before the early 90s, Asperger syndrome was not well-known at all. It was discovered by Hans Asperger in 1944. About the same time, Leo Kanner was doing work with children who were "lower functioning" than the children Asperger was working with and he wrote a paper on Kanner's autism, more commonly known as classic autism. AS finally made its way to the DSM in 1994, but it was pretty much forgotten about until then, probably because it was harder to diagnose than classic autism and because AS didn't seem to be as "disabling" as classic autism.

It took a long time for us to be able to understand as much about autism as we do now. We didn't know that it's a spectrum disorder with different diagnoses along the spectrum. All there really was before now was the stereotypical presentation of autism: the person who is non-verbal, bangs his head off of things, and would have been put in a special school or an institution. People who would have been diagnosed with Asperger's now might have been diagnosed with a learning disability or just seen as quirky, like I was before I found out about AS. Now that we know more about autism and more people are becoming aware of the signs that their child might be autistic, more children are being diagnosed than they were before. Pediatricians are paying more attention to when children hit milestones and at around 2, children are getting screened for autism. Before this, there were lots of people who were either misdiagnosed or weren't diagnosed with anything.

There are quite a few disorders along the autism spectrum. Where there used to be just autism, there is Kanner's autism, Asperger syndrome, Rett's disorder, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). In the UK, Hyperlexia is a separate diagnosis that is on the autism spectrum, and some people consider sensory disorders to also be on the spectrum. What used to be only one disorder has expanded into five disorders. That 1 in 150 statistic doesn't just cover the diagnosis of Kanner's autism; it covers the entire autism spectrum.

I hope that, by learning the history of autism and realizing how far we've come since it was first discovered, people will realize that there is no autism epidemic. Maybe then autism will become a little less scary to people.

Vaccines and autism

2008-06-08T08:03:00.000-07:00

If you haven't been living under a rock for the past year or so, you know that many people have been touting the idea that vaccines cause autism. The people who believe this think that mercury in the form of thimerosal, an additive that was once used in vaccines as a preservative (it has since been removed from all vaccines except the influenza vaccine) causes autism. They think that the child is born neurotypical and then, when he gets his dose of MMR (Measles, Mumps, and Rubella) vaccine at around 18 months, a reaction happens which makes him autistic. I don't really follow this very much, because I think it's totally false (I'll come back to that here in a bit) but I think they might also have issue with the DTaP vaccine (Diptheria, Tetanus, and Pertussis).

I personally do not think that autism is caused by vaccines. My view is that it is genetic. Pretty much everything that I've seen so far has given credence to that hypothesis: the occurrence of autism in families, even among different generations; the higher rate of occurrence of autism in siblings, especially identical twins; and the occurrence of autism in babies "fathered" by sperm donors who had a form of ASD. There are children who have never had a vaccine in their entire lives who are autistic. If vaccines cause autism, how would you explain that? There are babies who show signs of autism before they're vaccinated. If vaccines cause autism, how would you explain that? You can't, or you would just make up some excuse as to why this child who had never been vaccinated is autistic. What the children who are neurotypical before they receive a certain vaccine and then start "regressing" have is either vaccine poisoning or a metabolic disorder, not autism. There have been multiple studies looking into the validity of the belief that vaccines cause autism and not one has come back conclusive.

Even though I do not agree that vaccines cause autism, I do think that there are too many vaccines on the schedule and I do think that there are way too many in the first years of life. I am delaying vaccines for my child until he's about 2 1/2 years old, not because I don't want him to be autistic, but because I don't think his immune system can handle all of that stuff being injected into him. An adult doesn't even get as many vaccines as we pump kids with nowadays. Between when a baby is born and when he turns 3, he will get at least 38 vaccines, including the combined vaccines (like MMR and DTaP) and the ones that require three or four boosters. That is a crazy amount of stuff to inject into such a small person. And the kicker is they keep adding more. One that was recently added was one for Rotavirus, and they give the Hep. B at birth, which is confounding to me, because the Hepatitis B vaccine was developed for people who use drugs that are taken intravenously and prostitutes, not babies. Unless babies are doing a lot more racier things than we think they are, I don't think they'll need that vaccine. Some of them were developed because they don't want parents staying home with their sick kid, like the chicken pox vaccine. I had chicken pox and I was just fine. I missed about a week of preschool, I sat around and scratched and got oatmeal baths and that's about it. So yes, I do think that there are way too many vaccines on the schedule and that they're mostly concentrated during the first year of life.

The notion that vaccines cause autism is deeply offensive to me and to other autistic people. When someone says that you are autistic because you received a vaccine, or because of any other environmental cause, they are essentially saying that you are the way you are because you were poisoned and your brain was damaged by a neurotoxin. No one, I repeat, NO ONE, deserves to hear that. Absolutely no one. Not someone who has Asperger's, not someone who has PDD-NOS, not someone who has Kanner's autism, not a little autistic child who you suspect doesn't understand you, not a parent of said child, NO ONE, okay? If you (general you) say that to or about someone who is autistic, you are saying something very, very offensive. I cannot tell you how shocked I am that people don't understand that, that they wouldn't think, "Hey, maybe it's not a good idea to tell someone that their son/daughter is autistic because he was poisoned by his vaccines." Umm...yeah, maybe that might not be such a good idea, ya think? Would it be okay if I came up to you (general you) and essentially said that you were damaged goods? No, it wouldn't. So why would anyone say that to or about a child? That doesn't make any sense to me. Does it make it right because the child is "diseased"? Does it make it justifiable in someone's mind because the child supposedly can't understand what you're saying anyhow? How do you know he can't understand exactly what you're saying? Just because he may not be looking at you doesn't mean he can't understand English and doesn't know that you're saying that he's less of a person than someone who isn't damaged. PLEASE THINK before you open your mouth and say something to or about someone else, especially a CHILD, for goodness sake, that is as destructive as that is.

And then the people who say that about their own children, well, they're another beast in and of themselves. The ones who post before and after pictures of their child on the internet and tell about how their child is "recovered" or "cured" of their autism. The ones who read and write books telling about how a diet or a quack treatment (most of which are very harmful and potentially lethal) "cured" their child and rid him of his terrible autism. The parents who talk about how they pulled their child out of the "abyss" of autism and now he's a normal, happy child again, whereas before, he was a soulless, lifeless being. Yes, people actually describe their children in this manner. That's the danger of this stuff: it turns some parents into madmen, always seeking out the next cure, always buying the next book that talks of how the author's child "recovered" from autism and how their child can, too. They don't see that these people are using them to make money. Autism has become a huge industry.

I am going to say this once, and, even though I know I'm going to have to say it again, I hope I don't have to. Here it goes: YOU CAN'T CURE OR RECOVER FROM AUTISM. IT IS IMPOSSIBLE. Autism is GENETIC. It is NOT caused by vaccines, Wi-Fi, cell phones, radiation, television, refrigerator mothers, dog shampoo (yes, they are really coming out saying that autism might be caused by dog shampoo), global warming, or anything else that you think might cause it. I will repeat: AUTISM IS GENETIC. That means that, if you have an autistic child, you did as much to cause his autism as you did to cause him to have brown hair, blue eyes, or freckles. You don't have to take the blame for this one. Really. It's okay. No one is going to think that you're neglecting your child if you stop getting him chelation therapy or Hyperbaric Oxygen therapy. No one is going to call CPS if you don't buy the newest Jenny McCarthy book. Let your child just live and love him for who he is and he will grow up more well-adjusted and confident than any therapy in the world can help him to become. I'm trying to say this in love, because I know lots of parents are simply misguided, but it's hard when you yourself are on the spectrum and you have to hear that you are less of a person because of your "disease" that leaves you a soulless drain on society.

Tantrums, meltdowns, and sensory overload

2008-06-07T23:35:00.000-07:00

I'm going to get into some more controversial topics in the next few posts. I made the decision to do this after posting a comment on a friend's blog about her son. She had made an off-hand comment to someone about her autistic son and how he has trouble processing the dyes and additives in certain foods. The woman asked if he was vaccinated, she said that yes, he was, and the woman said that that probably caused it, and said woman told my friend that she knew someone who was cured by a diet. I'm not even going to get into how deeply offensive and ignorant that statement is, because I'm going to save that for a later post when I get into talking about vaccines, but in my comment to her, I mentioned how well she dealt with tantrums and that she understands why her son sometimes has tantrums, and that inspired me to write this post.

When I was little, I had quite a few loud, violent, very crazy tantrums. Around the 18 month period that some people say that autism presents in children, I started to become violent. I would hit, pinch, pull hair, scratch, and bite. I would scream and have horrible tantrums, usually when my mom would take me to the store or when I was tired or didn't get my way. My mom didn't understand why I would do these things and acted like I did these things on purpose to be bad when that wasn't true. I know now that I did these things because of sensory overload and because I couldn't express my feelings in a more positive manner.

Kids often have tantrums. It seems to be part of growing up. The difference between an NT child's tantrums and an autistic child's tantrums is the severity of the episode and how long they last. NT kids will outgrow this behavior when they get a bit older and are better at controlling their emotions and using words to express themselves, but, depending on the person, and autistic could still be having tantrums -- usually known as meltdowns -- well into their teens or even adulthood. It all depends on how well they can adapt to sensory input and how well they can hold it together in public.

Everything in our environment provides sensory input. This fact is more apparent to some than others, especially people with sensory integration disorders. When the amount of sensory input gets to be too much for a person, that person goes into sensory overload, and usually melts down. A meltdown can manifest in different ways. Someone experiencing a meltdown can have a tantrum. This is usually the mode of expression for children and those who are less able
to control their emotions and impulses. The mode of expression most common for adults and teens is to shut down. This can include taking a nap, zoning out, going off to be by themselves, immersing oneself in a special interest, stimming, etc. These are all coping mechanisms that are utilized because of sensory overload.

NTs can also experience sensory overload, especially small children. That is why children have tantrums. They are not necessarily doing it to be bad and need punishment, like my parents mistakenly believed, they are just overloaded and need some quiet time. That is why you will most likely see (or hear) youngsters having tantrums in grocery stores and other stores. The grocery store is often a last stop for families doing errands. That means the child had already been exposed to other sensory input, depending on where you had been previously and how many other places you visited before getting to the store. The store, especially grocery stores and department stores, are rife with sensory input. There is flourescent lighting and bright colors everywhere, two things that people with sensory integration disorders tend to avoid. There are lots of people talking and walking around and the music they play over the intercom. Your child might not have wanted to go to the store but had no choice in the matter, so this makes the entire trip worse for him. Maybe he wanted to go home but you decided to go for a quick trip because you were near the store anyway and it turned into a bigger trip than anticipated. This has happened to many people. He wants to get things but you have to keep telling him no when he asks, and that makes him even more frustrated. When you get to the checkout, the alluring candy section is in full view. He asks for something and you say, "No, it'll spoil your dinner." This is the point where a child usually melts down. The amount of sensory input and emotions he had experienced and stored away throughout the day has built up and this was the proverbial straw that broke the camel's back. Your previously mild-mannered child is now laying on the ground flailing, kicking his legs, and yelling, "It's not fair! I hate you!" Everyone is staring and some are making comments like, "Looks like someone needs a nap."

There are several ways to prevent the above scenario. One simple way would have been to forego the trip to the store altogether and go back when a babysitter or spouse is available to look after your child. This would especially be advisable if you had already been to several different places that day and this is the last stop. Please, if at all possible, never leave the grocery store as a last stop on an errand run. Try to determine how many stores you can visit until your child goes into overload. There are tools that are effective in combating sensory overload. One good one is toys. That could be anything from a favorite toy for a baby or toddler or a Leap Pad, Game Boy, or reading material for an older child. Handheld games and a book or magazine are especially effective because a child can get sucked into a game or magazine easily and become oblivious to everything around them, including sensory input. If your child is small enough to carry easily, you might consider investing in a baby carrier such as a sling or soft pack carrier. Some children find being carried in a carrier comforting and will fall asleep. You can bring headphones or ear buds to plug into the Game Boy and he can listen to the music, or you can bring a CD/MP3 player or noise canceling headphones. Another thing that helps is a weighted vest. He can use it to help calm himself; deep pressure is comforting to many people on the spectrum/with sensory integration disorders. Make the parameters of the grocery trip clear before you go in the store. Maybe you could concede to letting him have a snack or drink in the store to help him stay calm, especially if he's hungry or thirsty. If the child is old enough and the trip isn't going to be that long and if it's not too hot/cold outside, you could consider letting him stay in the car. When you get home, don't expect him to want to do much. Just leave him to do his own thing until he recovers from the overload or near-overload that usually occurs during/after an errand run.

If you and your child are having trouble with tantrums, just remember that he's not doing it on purpose. He doesn't want to have tantrums any more than you want him to have them; he just needs help learning how to handle his feelings and cope with sensory overload. If your child is having significant problems sensory-wise, consider applying for occupational therapy. It could be very helpful to your child in helping him feel comfortable in his environment.

2008-06-04T14:49:00.000-07:00

Taking things literally

2008-06-04T14:22:00.000-07:00

People along the autism spectrum tend to take things literally. Quite a few of us have trouble with things like idioms, metaphors, hyperbole, and sarcasm because we tend to take speech at face value. I heard on a documentary that, for an autistic person, talking to people is 99% language, which I tend to agree with. For NTs, it isn't 99% verbal. Quite a bit of interpreting what someone says is made up of body language, facial expression, and the tone of what is said. For autistics, we usually just listen to the words and take it at face value without considering that that person could be joking, could be having a bad day, or any number of possibilities. I can usually recognize sarcasm when I hear it, but sometimes I can't tell if someone is joking or not. I was a lot worse at it when I was little, so if someone said something hurtful to me, but intended it to just be friendly teasing, I would get really mad at them. That's when I heard things like, "You're too sensitive," and "You can't take a joke". It wasn't that I was too sensitive and couldn't take a joke, I just took it to mean that that person was deliberately being mean and didn't think it was a joke.

There's another thing that I have trouble with that fits into this category. I'm not sure what to call it, but here are a few examples. I already mentioned one before where, in preschool, we were asked to sit on laminated paper cut-outs of our hands, but I misunderstood and sat on my actual hands. Here are some more examples. Once I was at a friend's house and we were eating fried chicken and chicken soup. I noticed that there was an ice cube on my plate and I asked what it was for. I was told that it was for cooling down my food, so I started rubbing the ice cube on the fried chicken piece. When asked what I was doing, I said I was doing what you told me to do, and the mom laughed a bit and said that it was meant to cool down the soup. I don't really eat soup so I didn't know that that's what it was for. One example that happened today was when I was picking up my little boy from visiting his grandma. She said that he felt a little warm to her, and that the best way to figure out if he had a fever or not was feeling the lips. I thought she meant that I should touch his lips, but she said, no, use your lips on his forehead. I knew about that method, because my mom used to use it with me, but the way she described it made it seem like I should feel his lips instead of what she really meant.

If the autistic person in your life, whether it be a child, friend, or spouse, has trouble understanding what others say because he/she takes it literally, try to explain things in a little less roundabout way and explain them more literally. Supposedly, we think in pictures (I know I tend to do this, but I can't speak for everyone) and when I hear a phrase, I sometimes picture it in my mind. Another thing to do is to help him/her understand ways of speaking that aren't always straightforward, like sarcasm and expressions that people use. If you or someone else says something to her and she takes offense or is upset, help her to understand that it's just friendly teasing or explain that that person is just having a bad day. That will help put things into perspective.

Another Alex Barton Update

2008-06-01T10:47:00.000-07:00

Melissa Barton did two interviews with CBS. (I apologize if neither of these play the first time they're clicked on, just refresh the page and it should work.) Alex accompanied her in both interviews, and an autism specialist was with them in the first one on the page linked above. He seems to be doing fine, but I think he's getting sick of hearing about it (as anyone would). He is not going back to school this year, and Ms. Barton says that she has some things to figure out before she decides what the best program is for him. The teacher doesn't think what she did was wrong in any way. I've wanted to write some emails to the teacher and her higher ups about this, and one to Alex, but I still haven't figured out what to say. Alex has since talked to his classmate and friend, Spencer, and they're getting along fine, which is great.

If there's one positive thing that came from all of this turmoil, it's that more accounts of discrimination towards people with ASDs are being published in the news, like the accounts of the 13 year old autistic teen who was banned from his church, the 17 year old Aspie who was taken away from his family by CPS and put on psychotropic medication, and the 14 year old who had to sit in the classroom all day with just his bus aide while the rest of his class was on a field trip. Hopefully more accounts of this type of bullying and discrimination will make its way to the mainstream media (Heaven forbid that they happen, but if they do, hopefully other people can hear about it and take action) and more people will realize that autistic individuals are discriminated against on a regular basis.

One thing I'd like to add: If you're on FaceBook and would like to support Alex Barton, join the group "Support Alex Barton!" It was made by an autistic individual. You can also write a letter to Alex or write on the FaceBook page, and there's a petition you can sign, too. I think it's towards getting the teacher fired.

Scripting

2008-06-01T10:40:00.000-07:00

I learned the other day that scripting is a form of echolalia. Echolalia is a characteristic inherent in autism where the individual will repeat things that are said. I have immediate echolalia (repeating something right after it is said) and delayed echolalia (repeating something that you heard later), which is also known as scripting. I would suspect that it was given this name because it's like the individual is reading directly from a script. People can do this with TV shows, commercials, movies, and ready-made phrases. A common example of a ready-made phrase that most people use is "God bless you" when someone sneezes. The child might use a ready-made phrase every time a certain thing happens, like if he sees an apple and says, "Look! An orange! No, it's an apple." It's a way for him to make sense of his world and, in this case, it helped the child remember that the object was an apple and not an orange.

I scripted when I was little. I would repeat slogans from TV commercials in every day life, most commonly to the workers at the cash registers at the store. People thought it was cute. I watched TV a lot as a kid and it's something that replaced small talk for me. I would also watch tapes over and over and repeat the things that were said later and I'd sometimes say them as the characters were saying them in the movie. I did this with Amadeus and Monty Python and the Holy Grail, but my favorite was Winnie the Pooh and the Honey Tree. I could do the whole thing verbatim. Sometimes, when I heard a phrase that was in the movie that was spoken in a conversation, I would start the script from that point in the movie. I wouldn't just repeat the words, I would also repeat the rhythm and the tone in which they were said. To me, it was like humming a song. When you hum something, you don't just go "hum hum hum", you also hum the notes. Well, the same can be said with scripting. I was proud of having the ability to do this. To me, it said that I had a great memory and I had the capacity to remember a 30 minute movie from beginning to end. I'm also pretty sure it was the only autistic trait that my mom accepted and was actually proud of, too (even though she didn't know it was one). It was like, yes, I can't eat a lot of foods or wear a lot of types of clothing and I melt down in public and can't talk to my peers, but I have an awesome memory. Another thing I can do that can be considered scripting is I can think of how to get from point A to point B, like the route I took every day on my way to school, and I can rehearse the entire thing in my head. This comes from doing the same thing every day and taking the same route every day. This kind of mental scripting can be really useful, especially in high school, because it can help you remember your schedule easier.

I read on Wikipedia that it can be mistaken as a sign of higher intelligence, and I sort of disagree with that statement. I believe that it is a sign of higher intelligence. It takes a lot of intelligence, IMO, to memorize an entire show, book, etc. from beginning to end, or even a large passage. I don't know how many children can do that, or even bother to do that. Scripting was another routine for me. I could watch a movie and be certain that everything would happen in the same order every time, and then repeat the ordered script later. Heck, I've been doing the same thing now with a show called The Big Bang Theory. I have every single episode and I watch them over and over, or listen to them in the background while doing something else (like I'm doing now) and I'm starting to memorize them. I can't fully explain why I do this, I just like doing it. I like the predictability and the repetition. Luckily for me, MP3s don't wear out like tapes do.

Clarification and an update

2008-05-27T10:40:00.000-07:00

I think I might've confused some people with the post before this last one. When I confessed my feelings about reading the different therapies kids are eligible for now, I meant that I was kind of upset that I didn't have the opportunity to get the help I needed. It could've made my life so much better and easier, and my parents could've been so much more understanding than they were about everything. I had a hard childhood. I got teased and beat up a lot from kids and I received a lot of degradation and abuse from my parents because of my many quirks and I feel that if I could've gotten some occupational therapy and feeding therapy, I would've been able to cope a lot better with my environment and everything. After I got my dx, I wasn't sure where I belonged anymore. Did I belong with the kids with special needs or with the honors and AP kids? Technically, if you have Asperger's, you are classified as having special needs, but I didn't qualify for the special needs classes, and I didn't feel like I fit in with the kids in the honors classes. A lot of them were fairly popular, cliquish, and sociable, and I wasn't. On the flip-side, there were people who were not as sociable, like myself, but weren't at the same academic level as I was, so it was all very confusing. I still have some trouble figuring out where I fit in the world of labels and classifications. At any rate, though, I'm sorry if that post was confusing and offensive to anyone. I didn't mean to offend anyone. I was just kind of frustrated when I wrote that.

Here's the update part of the post: the teacher who voted her Aspie student out of the class is going to be reassigned. Here is the article. The boy, Alex, is doing fine. I still hope that she gets fired and is never allowed to work with children again. This story is getting some coverage, though, so that's good. I heard that it was the biggest story on Digg yesterday and the Daily Kos and CNN covered it. Hopefully it gets the coverage it deserves. That will ensure that this school won't be able to cover it up and the teacher will have to be punished more harshly.

Autistic boy voted out of classroom

2008-05-24T17:52:00.000-07:00

Did anyone see this? A 5 year old boy with Asperger's was voted out of his classroom by his classmates. His teacher actually proposed that they get rid of this kid. This absolutely pisses me off to see a fellow Aspie be discriminated against in this manner. I would be outraged if it was just any old kid, but they had him removed because of his Asperger's. They said he was "disgusting and annoying". I know in my heart that if any of my teachers had let the kids vote me out of class, they would have, and that hurts even more; that something that would've been the worst thing in the world for me when I was that age became a reality for this poor child. If this has angered you, as well, please do something about it. Write to the teacher or principal. Here is the teacher's email and here is the principal's.

The Double-edged Sword of Autism Awareness

2008-05-21T02:19:00.000-07:00

So I've been reading autism blogs and going on autism forums and reading about how so-and-so's child is doing (insert therapy/therapies here) and whatever else, and I feel kind of bitter and envious. It definitely isn't even close to being all-consuming, and it definitely isn't something that occurs to me all the time.

Let me explain. I was a mainstreamed, public school kid. I obviously have AS, but I also have social anxiety and lots of sensory issues, and I had a TON more when I was a kid. My mom seemingly had no idea that the first two of the aforementioned things were going on, but I knew there was something different about me. It really hit me when I started preschool and I was the only one reading the newspaper and speaking with adults as equals. When I tried to talk to my peers, they didn't understand a word I said. They just weren't interested in politics, paleontology, and the stock market. They wanted to talk about other things (what they were I'm still not sure, but it would've been boring to me, anyhow). The first day of school when we were told to sit on our hands, which were actually little cut-out hand prints with our names on them, I was disturbed that anyone would ask me to do that. I thought, "Okay, if you say so," and did so. No one else did. My teacher talked to my mom about it and my mom gently explained to me that she wanted me to sit on the cut-outs and not my actual hands. You'd think she would've been tipped off by that, but no. You'd think she would've been tipped off by the fact that anytime she would try to get me dressed, it was an all-out war. I couldn't wear turtlenecks and sweaters (still can't), frilly socks, dresses and clothes with bright flowers, lace, and other girly stuff on them, etc. etc. You'd think she would've been tipped off by the fact that I couldn't hug any of my relatives, including her. It took 16 years for her to admit to me that she thought that I might have autistic tendencies. She never thought to take me to a specialist or anything. If she would've, I could've gotten OT, social therapy, feeding therapy, and maybe more. Maybe she wouldn't have yelled at me for being too sensitive, for having the quirks that I did. Maybe my dad would've been more sensitive about my clumsiness and not yelled at me when I would accidentally spill something or accidentally bump my elbow off of the thermostat, like I did these things on purpose.

But the Asperger diagnosis didn't become fully well-known until around 1993, and even then it wasn't even half as well-known as it is now. What was being touted at that time was the term "spirited child", which my mom decided I was. That still didn't mean that she was going to be sensitive to my needs, like she would've been if she had known that I was autistic. It didn't mean that I was going to get therapies that would have made me a lot more comfortable. It meant that I was just stubborn, but in a good way (sometimes), and smart, and that's pretty much it. Now, someone like me when I was little would have been screened by early intervention and would be getting therapies. I could have been totally different. I could be eating cooked mushrooms, cream cheese, and other foods that I think are gross right now. Maybe I could've gotten a job and stayed with it when I was in high school. Maybe I wouldn't have been bullied and harassed as much as I was. I'm glad that more and more kids like me are being identified and are getting the help they need when I didn't.

However, of course there's the publicity and devastation rhetoric that is prevalent now, which is where the other side comes in. That part sucks, no doubt about it. I'm glad that people are starting to try to understand autism and autistic people instead of just writing us off, but with it comes the reinforcement of disgusting language that is just so hard to hear and read. I'm glad that more and more people are getting away from the Rainman stereotype, but with it comes the phrases like "anyone can have autism, you can't just see someone and know that they have it," like there could be people walking around with this horrible thing and you have no idea. It reminds me of how people portrayed AIDS; you can't just look at someone and know that they have AIDS, so be scared of all people just in case. Ugh. So it's definitely a double-edged sword. Hopefully, as time goes on, people will become more educated about autism, and then this business about the language and attitude that are prevalent in society can be resolved. I realize I can't go back in time and convince my mom to get me the things that would've benefited me, but I can help make life better for kids in the present and help create the paradigm shift that needs to happen in order for autistic people to live harmoniously in a world made for NTs.

Perseverations

2008-05-18T23:56:00.000-07:00

This is probably a new word to some people. It's something that an autistic person gets sucked into easily and is pretty much all he/she thinks about and does. If anyone has a better definition, I'll put it here because honestly, I can't really think of a good definition. I've had a lot of them over the years: dinosaurs (which, from what I understand, is a typical autistic perseveration), Barney, virtual pets, Pokemon, Dragon Ball Z and other anime/manga, Harry Potter, Lord of the Rings, Calvin and Hobbes, Latin, Boston Legal, and Asperger Syndrome. (Note: this is in chronological order starting when I was about 2.) And those are just the ones that stand out to me most. I wanted to learn anything and everything about these things. I would collect as much memorabilia on these subjects as my allowance would allow me, with the exception of Harry Potter, because my mom didn't appreciate that one (to put it lightly). I used to go to the library almost every day from 9th-12th grade. That was my hang out. I'd check out a bunch of books, read them all in a few days (thanks to the wonders of hyperlexia), bring them back, and get a bunch more. It was cool and I learned about a lot of things that way. One of my fiance's perseverations is reading Wikipedia and he learns about a lot of things that way.

I'd say mine right now is an Attachment Parenting site that I go on a lot. I'm also starting to get sucked into World of Warcraft and geeky stuff again, like Doctor Who and video games, and this sitcom called The Big Bang Theory. I'm also starting to get into my yearly ASD perseveration, hence the creation of this blog. I miss taking Latin and I want to get back into that. I'm not sure how, though, but I'll figure it out eventually.

I think a lot of parents don't like when their kids develop perseverations. That's just what I've observed. My mom would constantly tell me to get a hobby. She wouldn't understand that that *is* my hobby. It's the only hobby I really want to focus on at that time. My perseverations can go on for years. I was into Pokemon from 3rd grade until 8th grade. I was into dinosaurs from the time I was about 4 until 2nd-3rd grade. When I get sick of it, though, I really get sick of it. Like with dinosaurs. I used to be totally obsessed with them, but now, I never want to see another dinosaur again. Some of them wouldn't be appropriate for my age, like it would probably be weird for a 19 year old mom to like Pokemon. I've learned, though, not to give away or sell the stuff you accumulate over that time, because sometimes you pick it up again and it's good to have that stuff so you don't get all frustrated when you remember that you threw all of it out. I've done that once or twice. If/when your child develops a perseveration (unless it's something gross or inappropriate), just let it run its course. He'll want to talk about it all the time, and that might be annoying, but he talks about it so much because it's his way of sharing something that he's interested in. It replaces chit-chat. Don't try to discourage them. You can actually use them for things. I've heard accounts of kids who didn't read until Harry Potter came along, and now they read everything. Thomas the Tank Engine, another typical autistic perseveration, has been known to teach some kids social skills. So even though it might seem like a destructive obsession, it really isn't.

2008-05-16T22:01:00.000-07:00

Ugh. I've been having an *interesting* time of it lately, mostly caused by anxiety. At one point, I was so anxious that I couldn't sleep at night, so I would wait until it was light out to go to sleep, even if I was exhausted. Now I've just readjusted my schedule so I go to sleep at 3:00 pm. I haven't really been cleaning, so that's not too good. I started trying to get my diet in order and cook more whole foods but now I've slacked off on that. I'm afraid to go into the laundry room of our apt. complex because there was this guy who tried to get me to be his friend and it seriously creeped me out. I haven't really been outside. I've mostly just stayed in bed on the computer. That can't be good. I'm not sure what to do. It seems too hard to get my act together again and I'm tempted to just stay where I am. It's a lot easier but it's not good. The house needs to be clean. *sigh* Oh well.

Stimming and parents of autistic children

2008-04-21T19:46:00.000-07:00

Yes, they do fit together. I might have separate posts featuring each of these issues, but this one is an introduction to each one, how they affect my life, and how they fit together.

Lots of people on the spectrum do what is known in the autism community as stimming. The word "stim" is short for self-stimulatory behavior. It is something that kids and adults on the spectrum (and even some people who are not on the spectrum) do in different situations. The most common situations where you would see someone stim is when he is bored, he needs sensory input, or he is expressing an emotion. Some stims, usually the ones NTs do, are accepted by society, like tapping your foot, clicking a pen, things that most people do. Stims that are stereotypically common among autistic people, though, such as rocking, hand flapping, head banging, are not acceptable in society. I wonder, what makes the first group of stims acceptable and the other group unacceptable? Is it because the second group is whole body movements, which are therefore more noticeable and also more distracting? Is it just scary to see someone do these things? Does it somehow make them seem unpredictable and more likely to harm someone? I'd really like to know this. Also, why is it acceptable to rock back and forth if you have a baby in your arms but then when you take away the baby, it isn't?

I had more stims when I was little. Some of them are different than the ones I have now and some are the same. I would sit under tables, under my bed, and in my little play house because I like being in small places. I still like that, but I don't really have any little places to be. In place of these, I cocoon myself in bed. I used to pace around, but I don't do that anymore. I would spin around a lot. I still sometimes will spin around in an office chair. I would also jump up and down on the bed and the couch and jump off of things onto other things. When I was in kindergarten, I had a pencil with a bunch of spirals on it. I would put it in front of my eyes and spin it around and say that I was hypnotizing myself. I would watch certain videos over and over, too. My favorite was Winnie the Pooh and the Honey Tree (I still watch this sometimes lol) and I would recite the whole thing. That's called scripting. (I might do a post solely on this later.) I would zone out a lot and I still do this. More stims I have developed over the years is cracking knuckles (even my neck, wrists, toes, ankles, and any joint I can crack), verbal stims (making certain noises over and over), getting Sam to lay on me and squish me, rocking myself to sleep, rocking in a chair sometimes, flapping my hands if I'm disgusted over something, and jumping up and down when I'm excited. I also do this weird thing sometimes that I think might be a stim where I'll smell something that I know I'm not really supposed to smell, like mustard.

Here's where the parents part fits in. I've been talking to parents of children on the spectrum IRL and online, and they'll talk about how annoying these stims can be. My mom would tell me to quit pacing, quit spinning, all of that. She would tell me to stop trying to hypnotize myself because I could mess up my brain or something. She thought I was having seizures when I zoned out. She would ask me, "Aren't you going to stop watching that tape? I'm sick of hearing the same thing over and over." She didn't know that it was good for me to stim. If I didn't, I would probably go crazy. It helps regulate people with ASDs and keeps us calm. So all of you parents out there who are bothered by your child's stimming, it's really good for him/her to stim, even though it's annoying to you. If you kept your child from stimming, he would be a lot more annoying, let me tell you. He would probably get whiny and become destructive. The only stims I can think of that would be harmful are the self-harming ones like head banging, pulling out hair, cutting oneself, etc. Those are the only ones, IMO, that should be redirected. All others, though, are fair game. Happy stimming!

Autism Awareness Month

2008-04-02T06:15:00.000-07:00

April is Autism Awareness Month. Today is Autism Awareness Day, as declared by the UN. From what I've gathered, the reason for this day and month is to spread awareness of autism: what it is, how to identify it in your child, and the organizations that are fighting for a cure. I want this event to eventually become more like Black History Month. We don't need to be aware that there are black people in the world. The same can be said of autistic people. People certainly know about autism. It's featured in the news all the time. If you're a parent, especially the parent of a small child, you know about autism. What we need to be made aware of is that there are people who treat autistic people badly. We need to be aware that schools, especially public schools, don't know how to teach autistic children and teens, including kids with Asperger's. It's great that schools are making great strides to improve education for autistic people, but I still hear stories of kids who are denied services, whose services "ran out" or could no longer be paid for, and many other situations. All children have the right to an education, autistic or not.

I'm going to try to post every day this month in honor of Autism Awareness month. I dream of a day where we can look back on this time and wonder why autistic people weren't included in society and why people wanted them to be cured. Hopefully the voices of autistic people will be heard.

Autistic Liberation Front

2008-02-16T08:17:00.000-08:00

I've been watching a lot of christschool videos on YouTube and I've decided that this ALF is for me. I'm not into finding a cure, and, honestly, I don't think there's anything to cure. It's like curing left-handedness or homosexuality. It just can't be done. Christschool and the people at autistics.org have become like heroes to me. They're educating the ignorant and speaking out against the establishment and their ways. They're pioneers. That's all there is to it. So please, if you haven't already, go to YouTube, type in "christschool", and watch some of his videos. They're great.

Autism Speaks Supporters

2008-02-05T14:18:00.000-08:00

Posautive means being positive about autism. There are so many organizations seeking cures and preventions for autism and not enough organizations that seek to accept autistic individuals. This blog aims to get the word out about groups like Autism Speaks and to aid in the fight against them.

[URL="http://www.mothering.com/discussions/showthread.php?t=842091"]Here[/URL] is a list of Autism Speaks' supporters. I will eventually create a site containing this list, some other posautive links, and, eventually, Social Stories written for adults. Some of the topics will be how to get an id card, voters registration/voting, how to read a bus schedule, etc. If anyone else wants to help write the stories, or has any ideas for topics, email me at amandaecannon@gmail.com. Here are some posautive links:

http://youtube.com/user/christschool
http://youtube.com/watch?v=QWjoWXhnXC0
http://youtube.com/group/posautive
http://www.auttv.com/
http://autistics.org/
http://www.autism-hub.co.uk/
http://en.wikipedia.org/wiki/Controversies_in_autism
http://en.wikipedia.org/wiki/Neurodiversity
http://en.wikipedia.org/wiki/Autism_rights_movement
http://en.wikipedia.org/wiki/Aspies_For_Freedom
http://www.aspergianpride.com/
http://www.gettingthetruthout.org/