It’s like dueling banjos over at Change.org and on Twitter. On the one side, you have the National Autism Association sending out regular tweets and getting “their side” to sign their petition. Their petition states that adding the diagnosis of Wandering to the ICD-9-CM will mean more research into it, create better responses when it happens and so forth. On the other side, you have the Autistic Self-Advocacy Network sending out regular tweets and getting “their side” to sign their petition. Their petition states that adding the diagnosis of Wandering to the ICD-9-CM will mean higher likeliness of seclusion and restraint in the name of treatment, rights being stripped from Autistics, especially autistic adults, and so on.

Being a proud supporter of ASAN, as well as having a chapter, you can guess which side I support. While I have many real life friends that are members or part of NAA, this is yet another area that we will have to agree to disagree (as there are numerous other areas that we do so as well). But yesterday I read a blog where it questions our sincerity in caring for the “lower functioning” “less able” on the Spectrum. So here I want to make it clear that I personally VERY much care.

Daniel is a wanderer. We have thought in the past that we may have to get an Autism dog to help curb that, but so far we have not needed to. We put a double deadbolt lock on our front door. We have had him walk out the front door, around the corner, and into a grocery store. We have had him wander into traffic. Believe me when I say I CARE about anything that has to do with children that wander. It is something we have to prepare for everywhere we go, any place we live or visit. Because of our due diligence, we haven’t had him escape in over a year now.

At the same time, I find it DEEPLY disturbing that anyone would want to put the diagnostic label of wandering onto anyone. Wandering is not a diagnosis, it is a behavior. If it is approved, this would be the first time I’ve EVER seen an Autistic behavior listed as a DIAGNOSIS. If this Autistic behavior is listed as a diagnosis, are there any other Autistic behaviors that would be listed next? To me, that alone makes it not worth it to do.

As well, I do not see how it can possibly help first responders when there are other measures (Mason Alert anyone?) that do not require a new DIAGNOSIS to achieve the same effect. Research to me is a moot point as the reason for wandering is as varied as any other behavioral response. Daniel is a wanderer when he’s very upset. He’ll take off running when he’s flustered or frustrated. Other times he’ll stomp off and then open the door and walk out. It has happened. This is because he’s flustered or frustrated.

What can we do to help him not wander? Recognize when he gets flustered or frustrated, help him communicate how he’s feeling, and help him calm down. Other children, some do it because of an attraction to something. If they don’t have a way to communicate, then sometimes they will wander off. The long or short of it, giving someone the ability to communicate their needs, understand their feelings, and then giving them the tools to support their needs is what needs to happen. Do you need a separate diagnosis for that?

If it’s about getting GPS tracking for your child, what are you doing to PREVENT wandering? There are two key pieces to wandering prevention and response. The GPS device is not nearly enough without a good proactive prevention plan.

What happens to these children that then become adults with this Wandering label? And do we need a diagnostic label BEFORE deciding what’s to happen? I know that they want to research it, but research should ALWAYS come before labeling. The end results of this label are just NOT clear and until they are, we SHOULD NOT diagnose thousands of children and adults.

I’m certain I should have shared this with my readers long before this, but we’ve been super busy over here. Tomorrow morning at 10am CST time, I’ll be on Autism Women’s Network‘s Blog Talk Radio broadcast with Shannon Rosa talking about our sons’ iPads.

As I’m sure most are aware, Daniel got his iPad for Christmas. Since then, he’s taken it every day to school. He uses it for his daily schedule, is token board and now for his social stories. It has allowed me to stay after school for Stephen’s extracurricular activities and know Daniel has something to stay occupied. We put Finding Nemo on it, so that works especially well.

He has started actively requesting me to download new stories via Read Me Stories. It’s an eBook app that allows a new eBook to be downloaded daily. Some of the stories he’s not all that interested in, but loves many of the others. We often catch him in the morning before school doing his math addition game.

He has also really fallen in love with YouTube. As his spelling gets better, he looks up and watches more videos. He also found a fish tank app where he can buy new fish and decorations. Then his games, which he has been GREAT at not playing while at school. It’s one of his two rules that he can recite, “No movies. No games.”

He also has been able to show his classmates a few things on it. They are of course fascinated by the fact that Daniel has an iPad, but they ask him questions and he answers. While I don’t think it’s made him any more friends, it has really opened up his communication with his classmates. It’s amazing what a simple device can do.

Next up is to buy him an iPad pen so he can start working on his writing skills. As nice as the writing programs are, they just don’t translate to the fine motor delay without the use of a pen. We gave one of the two USB dongles to the school for easy transfer of pictures, and kept the SD card one for ourselves. I’m just so glad they are willing to use it!

To find out more about Daniel and his iPad as well as Shannon Rosa’s son’s progress. Catch us tomorrow!

Daniel has been really enjoying his iPad this past week and a half. Being home and iced in, it’s been nice for him to have some familiarity to his day. We just bought Stories2Learn this evening along with the iPad SD/Camera USB dongle. So a week or two, I should have a review of that.

iReward

When we first looked at the iPad option, I thought without a doubt that iEarnedThat was going to be our token board. I loved that it had puzzle pieces, ended up showing the reward, and had the ability to use it for multiple kiddos if needed. (You never know with two Autistic boys in the house!) What a shock when I bought it, added all the pictures of his rewards at school first, and showed it to his teachers. I couldn’t undo. You had to completely delete the goal and remake it each time you wanted him to work for that reward. I was devastated.

I had seen iReward, and while the only real difference I had seen in it and iEarnedThat was a price, and the neato ending with your completed prize, I had really dismissed it. How wrong I was!

This app may not be a spiffy looking, but it does many things with ease. First, it works excellent as your typical token board! At school, they’ve always used a little board with velcro’d pennies and laminated pictures for the reward. Quite honestly, this app is exactly that! Except, instead of pennies, there are stars, or smilies, or check marks. You can reset the rewards so it’s not one time use. This is great for ‘our kids’. The rewards are displayed with an image of your choice (so yes, you can add your own photos!).

It’s made it really easy to help him earn his rewards. It keeps track of the stars, so you don’t have to keep it open the whole time. And Daniel loves to click his stars (he prefers the red stars) once he’s completed his tasks. It was seamless change from lo-tech token board to this. I highly recommend it for those looking to replace their lo-tech solutions. It is available on iPhone, iPod Touch, and iPad. Grembe, the company that produces iReward, also has several other apps. They also seem to be taking baby steps to developing for Android. One only hopes that iReward will be ported over for Android users!

Grembe’s iReward Demo:

I DO NOT SUPPORT AGE OF AUTISM

Edited for my glaring mistake. (Reversed names)

I felt it was needed to place that disclaimer at the top as I know the title could lead one to believe I support them. I went for the sole purpose of planting the seed of doubt in parents who may have been on the fence. I had 3 invites on Facebook to go, so I took the opportunity even if it meant my sanity (lol, just kidding!).

Dan Olmstead started by talking about Occam’s Razor. For those that don’t know, Occam’s Razor:

is a principle which generally recommends selecting the competing hypothesis that makes the fewest new assumptions, when the hypotheses are equal in other respects.

OR

simplified:

Of two equivalent theories or explanations, all other things being equal, the simpler one is to be preferred.

To put it short and succinctly, they believe that mercury is the simpler explanation. I don’t think they read the actual principle, as you will see later on in this piece. They compare Autism to Crop Circles to make their point of Occam’s Razor. That because genetics is complicated *They showed a slide of the complexities of genetic research into Autism* that it is more like the theory that Aliens created the Crop Circles. However, they equate Vaccines and Mercury to the two drunk guys in a truck creating them. (Note: I thought that was pretty funny that they called themselves two drunk guys.)

They then went into the fact that Kanner was the first case studies. They gave two theories why these were the first case studies:

1. That Kanner was such a genius that he finally recognized the disorder.
2. That Kanner was witnessing the first ever Autistics.

They, naturally, would believe the second. However, I propose a third theory. That there was literature on the subject dating into the 19th century which did in fact show Autism, but with no actual label placed on the characteristics. (Note: Again. They didn’t read the actual principle of Occam’s Razor that the least assumptions is the accepted one.) They go on to state that by the 1930s there had been in all of human existance been 100 billion people roughly. That if there were that many people, then surely we would have seen the 1 billion some-odd Autistics. (Hrm.. Could it be that before 1900 that life expectancy was less than 40 yrs of age? Or that many of the disabled were put into institutions? Or they went on to have happy adulthoods like happens even today?)

When it came down to it, they didn’t just blame vaccines, but mercury in any form. They started out explaining mercury and arsenic as treatments for syphilis. Then said how the researchers into syphilis treatments went to making biological weapons during WWI. Then when the war was done, that’s when they came out with thimerasol and ethyl mercury that was used as an antifungal in plants and trees. I think we all see where this is going. Mercury was put into antifungal form for crops and lumber, then of course, thimerasol in the first inoculations.

They then showed us how 8 of the Kanner 11 had been exposed to the mercury. Most of it is pure conjecture, but I do agree that the two parents that worked with the antifungal powder (one they can prove researched it, which is more than they could say for the others) could have easily brought it home. But this assumes of course that the first 11 were the first 11 in existance. The whole basis of their book and argument (as said by them!)

They then went into incidence rates rising. Lots of charts to show when incidence rates rose. Some more to talk about prevalence with special interest spent with Brick Township, NJ. It was all rather boring by this point to me. Same old arguments.

The Q&A

(This was a question during the end of the presentation and not part of the actual Q&A.)

Person 1: “Didn’t they take thimerasol out of vaccines?”

Blaxill: “No! It’s still in the flu vaccine which is given to pregnant mothers and babies as young as 6 mos.”

Me: “That’s not true. The one before age 2 does not contain thimerasol.”

Blaxill: “Yes it does.”

Me: “No it doesn’t.”

Person 2-5: “<I’m feeding your ego>

All the while, I have my hand raised. Blaxill keeps pausing at it, then turning to call on someone else. Eventually, Olmstead sees my hand and asks me. Sadly, I only got two questions in, but they were:

1. How can you say there was no Autism prior to Kanner when Dr. Down (of Down’s syndrome fame, 19th century) wrote about very distinct Autism characteristics?

• There may have been characteristics, but you can’t say that it was Autism because they don’t present particular cases.
• Europe was in the industrial revolution and this was the first time Down’s was reported.
• It might have been Fragile X and comes from the same time.

(Basically, just because it looks like Autism, smells like Autism, and quacks like Autism doesn’t mean it’s Autism. It could have been Down’s and Fragile X babies showing Autism characteristics. And it’s quite possible that Down’s and Fragile X started because of Europe’s introduction to the industrial revolution.)

2. Can you turn it to slide #26? Which one is it? You had numbers, can you switch it? Describe it and we’ll know what you’re talking about. The one with prevalence from around 1950 to present day. Yes? (Me getting annoyed that he wouldn’t switch it for those WITHOUT photographic/cinematic memory!) What do you say is the reason for the rates changing? I noticed the incidence rose after DSM revisions (~1984 and ~1995).

No. We went with current DSM criteria. (Well how are we supposed to know that if you refuse to go back to the slide and show us your data?)

At this point, he cut me off saying he needed to get to other people’s questions. I had several other questions:

1.  What is your explanation for the rate “increasing” even with no thimerasol?

2. What do you think of the survey out of England that shows rate of Autism in Adult Men to be roughly 1%? (Not including anyone who had mental health or were institutionalized)

3. What do you think you’re doing by saying Autism is either defective or sick? What do you think how you affect those on the Spectrum by characterizing it like that?

4. Why do you think that Autism is just seen as “quirky” and “antisocial” adults? Do you realize there’s a lot of us who weren’t diagnosed until adulthood who are significantly disabled?

5. What’s your explanation for the same data being shown in Asperger’s studies as Kanner’s studies done roughly at the same time? Or the text that shows Asperger describing Autism in the early 1920s?

—-

The dinner afterwards ended up me talking with Olmstead, a close acquaintance and another “Warrior Mom”. I finally got some of them to concede that at least in my family, it does seem to be genetic. Olmstead asked what my dad did, I can only assume to figure out how I became AS and my brother ASD.

I didn’t get home until 11am. I couldn’t calm down until 1am. And I woke up at 7am. While that’s plenty early for most, it’s not for me. So I’m leaving you all here. Hope you enjoy my wrap up of last evening.

Today is day 2 of school for the second semester. I’m happy to report that Daniel’s regular daily schedule has been set up in First-Then. The Morning Routine that came with the app has been modified to what we use. I will be adding his After School and Bedtime Routines to First-Then this afternoon. I’ve been setting up his Token board in iEarnedThat. We have tried using My Choices Board, but have decided that Daniel’s language skills are past the point of needing it. Though, I do plan on using it when he becomes frustrated as those are times he loses his communication skills.

I will be meeting with his Special Ed team lead as well as his instructional aide to train them how to use it throughout his day. As soon as they have a form to remove liability to the school, he will be able to start taking it to school. Within the next few weeks, we will be adding Stories2Learn and I will train his Speech-Language Pathologist at school on how to create those.

Daniel has used his iPad daily, even out and about. We did run into an unforeseen issue when his internet connection dropped out unexpectedly, resulting in a meltdown.  But we all know that inspite of it being a game changer, it does not mean the iPad is fool proof for all situations. I will be working on getting a few movies converted to watch on the iPad so we won’t run into that problem again.

I will update again after the training session on Friday. For now, thanks to all who have helped. If you’d like to continue to support iHelp Special Needs get iPads in the hands of Disabled children, please visit their website. All Apps linked above also credit their company. If you’re a parent of a Special Needs child, iHelp also has a giveaway for an iPod Touch 3G (previous version). I can’t thank Jennifer enough for all the work she put into helping us get the iPad, especially in time for Christmas!

As you all know, I’ve been working hard to get Daniel an iPad, hopefully by Christmas. Since starting, we have raised over $300 to this end. There are other people who have said they will be donating, but at this time, we are no where near the $600 needed to buy the device, insurance, case and apps. We will be contributing to the cost as well, but we don’t have the $300 to finish out the cost.

Imagine my surprise, when last week, when iHelp for Special Needs (@ihelpspecneeds) started following me on twitter! I’m sure @SpeechTXJulie had something to do with that as she’s the one who showed me how to get started on this journey. So I wrote to the lovely people at iHelp about Daniel’s story and I received an email back saying that they thought my children were beautiful and that I was a great mom for thinking outside of the box! They want to feature Daniel’s on their website, even!

I know it’s hard this time of year to give without receiving something in return, so instead, for those still shopping for gifts, I ask that you shop through iHelp. The donations will go to fund Daniel’s iPad still. I know in my “There’s an App for That!” series, I’ve given links to buy apps. If you chose to buy apps, I’d also appreciate you purchasing through iHelp, as they have a great extensive list of Apps for Special Needs and a portion of those purchases will also go to the iPad fund.

I hope I’m not upsetting any of my readers by doing all of this. I just really feel that Daniel will benefit so greatly from having this device. He’s an amazing kiddo! And I know that he can do great things so long as he’s given the right support!

If you are a family with a Special Needs child reading this, know that iHelp for Special Needs wants to hear your story too, and to help you get your child an iPad. As well, if you qualify, please think about going through the HollyRod Foundation. If you’d rather support a nonprofit to get a tax deduction, I’d also recommend the HollyRod Foundation at this time.

I do apologize for the delay in getting this out. I have been working hard unpacking, with physical therapy, at the boys’ school, and trying to find sources to get Daniel an iPad.

When we left off, I presented you with apps to help children with Special Needs. Some of the suggestions were for apps made specifically for this population, and others that are meant for general use. So I hope that you all found those apps useful.

Today is more for the Autistic parent reading this blog. These are apps I either use, or feel would be useful for people with other skills sets than myself. While some of these may be used in children and teens, I feel that have greater appeal to adults.

1. Round to It – ($2.99) – This simple To Do app has multiple list support, options for creating gift lists, jotting down notes, and emailing those lists. It also shows things that are overdue and upcoming. So if you have trouble with executive functioning, it makes it really simple to look at and prioritize.
2. All Done! – ($1.99) – Another To Do list app. I think this is more for people who have a hard time with a lot of bright colors and getting overstimulated. I prefer the color options to Round to It, but the neutral tones with this app certainly will appeal to other users.
3. Relax – ($2.99) – This one is going to be useful for those of you who get overly anxious. It gives you a scene to look at and relaxing sounds to go with it. There are a variety of options (9) for whatever scene you find relaxing. They also update it with new scenes, including accepting requests from users.
4. Groceries Grocery List – ($0.99) – Probably the most ingenious app I have seen yet! This app lets you customized to your local grocery store and price! It has commonly bought groceries, gives you total cost of the groceries you need, and flags coupon or sale items. Absolutely amazing to me!
5. iPrompt – (FREE) – This is more for those of you who do any speeches or presentations. It’s a teleprompter. I love this option as I tend to shuffle and shake pages when I try to speak. So having this as an option is rather nice. It even has the option to control the speed at which your text scrolls, so no shuffling or pushing your pages to find where you’re at. Love this app, especially with as many speaking/listening sessions as I’ve attended thus far.

These are all I have for “adult only.” I’ll bring you another installment of There’s an App for That! (Everyone Edition) later this week. Hope you enjoy these!

And boy are there! In my last blog, I listed just a short snippet of apps available for iPod Touch, iPhone and iPad that help children on the Spectrum. I thought it’d be wise to list more, those for Autistic children (this post), those for Autistic adults (next post) and those that can be used by all (last post). If I offend by suggesting something as just for children that can be used by Autistic adults, I do apologize. I’m going more “generally” for kids than for adults. So without further ado, my list.

For Autistic Children:

1. Free Apps
   1. Autism Xpress – An app that shows basic faces. The colors are vibrant and the pictures, inviting.
   2. Talking Tom Cat – This cat copies everything spoken to it, then repeats it aloud for you to hear.
   3. Model Me Going Places – A group of simple social stories for your child to read about going to different places. While I think the concept is good, I prefer the customizable social stories other apps (below) provide.
2. $10 and Under Apps
   1. PBS Kids – My Journal – ($1.99) – This app has two parts. Created by PBS Kids under the Mister Rodgers Neighborhood Brand, this little app has stories that can be read and have multiple choice answers about responding to different things. Then you can also have your child create their own personal journal entries with simple words and pictures.
   2. First Then Visual Schedule – ($9.99) – Allows creation of personal picture schedules. It has some preset images, but you can also talk your own, and add your own voice over. Also the layout is visually appealing to me.
   3. iReward Chart – ($2.99) – There is a lite version to this app, so if you’re not sure, you can always try that out! It’s a chore + reward chart. The free version only allows one child to be add, the paid version you can have multiple children. As well, you can have as many or as little chores as you think your child can handle. Each are fully customizable, as well as the rewards.
   4. Social Stories – ($6.99) – This app contains 2 sets of 6 stories for young and advanced learners. There is also an option to create your own, but I suggest using their Stories 2 Learn app for that (below).
   5. Kindergarten.com’s ABA Cards – ($0.99-$1.99) – I’m giving you their website as they have a whole series of ABA apps for identification, problem solving, receptive learning and more. Each type is a new app, which means while they are each priced low, if you get all of them, it will be over $10.
   6. Larry the Talking Bird – ($4.99) – Much like Talking Tom Cat, Larry repeats what you say. You can also play a tune on the piano and Larry will sing it back to you. I’m not sure that extra feature is worth the price tag for me, but it might be for you if you have a musical child.
   7. iWriteWords – ($2.99) – There’s a limit to the preset words, as well, you can’t work on a single alphabet letter, only as the alphabet as a whole. However, that said, this app (haven’t tried) seems like a good investment if your child is still learning to form letters correctly. They also seem to write “correctly” much like the Handwriting Without Tears program. It also gives more spots to hit than HWT does. Definitely recommend.
   8. Sight Word Flash Cards – ($0.99) – Otherwise known as Dolche words, this app has flash cards for most readily used Sight Words. This is great for beginning readers, or those having trouble with spelling.
   9. Tell Time – ($1.99) – This simple app has 3 stages of learning to tell time. We haven’t gotten to this yet for either of the boys, so I have not used it yet. However, recent discussions on some lists made me aware how difficult it is for non-visual learners to learn to tell time. For those, I think this app would help gain that skill.
   10. Sentence Builder – ($3.99) – With 3 skill levels, pictures to help guide, this app helps learn to make complete, and grammatically correct sentences. It offers a range of pronouns, adjectives and verbs to construct a sentence.
   11. My Choices Board – ($9.99) – I had not seen this before, but very much want to use it now! My Daniel uses choice boards all day at school and at home. It requires us to take a picture, laminate, then apply velcro to any new toy or game he likes. This app you can do the same thing without creating binder after binder of PECS and pictures. If you’ve ever had to go through that process you know how tedious it is. If not, consider yourself lucky! At least now I know “An App can do that too!”
   12. abc PocketPhonics – ($0.99) – Many schools now days require their children to learn both Sight words and by Phonics. This app has children listen to words and pick out the sounds they hear to spell. I think the game-style interface makes this less grueling and instead makes it fun for children to learn.
3. Over $10 Apps
   1. Look 2 Learn – ($24.99) – This AAC app is listed under for children as I think some of the other apps are a bit more robust for adults. However, it does allow for customization, adding your own pictures, and adding a voice.
   2. Stories 2 Learn – ($13.99) – Unlike Social Stories (above), S2L is solely for parents and teachers to create social stories. The use of your own pictures, words, and voice create truly customized social stories for any use.

This is it for now. My next installment is my very short list of apps for adults on the Spectrum. Stay tuned! And please take the time to donate to our iPad fund for Daniel. Though I only listed one above that I expressly want for him, many more of these would also be useful for him, both at home and at school.

When I was first diagnosed with my many Anxiety Disorders, I felt like I was wrong, that I was crazy. I felt crazy because I couldn’t shake the anxiety feelings. I knew that anxiety was natural, and that it was just a matter of changing what I thought to make it stop. That’s what Cognitive Behavioral Therapy is all about, right? It wasn’t the sum of who I was, nor is it now. It was a part of me, but not all of me. It affected my life greatly, yes, but it did not change who I was when the Anxiety wasn’t present.

But years later, when I was diagnosed with Asperger’s, it seemed to complete the equation of what I was dealing with. It explained why I saw colors when I heard music playing. It explained why I loved nothing more than to be cuddled up in a large heavy comforter. Why I didn’t like polyester or wool. It explained why I absorbed information the way I did, and also explained why it didn’t come back out correctly.

To me, the way I see the world is unique, and as Stuart Duncan pointed out, this is not any different than the way everyone sees the world. The sum of our life and experiences determines who we are, right? Well, to me, it’s not just your life and experiences, but how you perceive those and the world around you. Your perception changes everything about an experience. It determines if you get mad or sad, happy or excited, anxious or depressed. And since my brain is Autistic, my perceptions are going to be Autistic. And if my perceptions are Autistic, then Autism dictates how I experience events. And if Autism changes my experience, then I believe it means that Autism is a large part of who I am.

Our personality is determined how we perceive, interpret and react. If all of those are brain functions, and our brain is wired differently, then wouldn’t it go to say that our wiring is a large part of who we are? Or in other terms, that Autism is a large part of who I am? I think it does.

When I heard about Communication Shutdown, which is a simulation for those without Autism Spectrum Disorders to understand the isolation felt by those who are, I slightly chuckled inside. Autism is a difficult condition to wrap your head around no matter who you are. Even those of us on the Spectrum are often without the words to describe what it truly means to be Autistic. And while those who have more ‘normal’ manifestations of empathy have the greatest of intentions, I do feel the movement and subsequent donations are quite misguided. So for today, I want to take a moment to introduce you to some amazing people, movements, and organizations who exemplify why we’ve chosen ASDay.

An Introduction

My son, Daniel, is 6 years old. He did not start to speak until he was nearly 5 years old. He struggles with it to this day. If he doesn’t get enough sleep, he loses his ability to create even 5 word sentences. In school, they use an AlphaSmart for him for written communication, because like most children with ASDs, he has poor fine motor skills. But this device can be used for much more than written communication. It has the technology available to serve as a speaking voice for nonverbal students as well. This versatile word processing unit is roughly $200 each. Our school system is quite lucky that it’s RTI (right to intervention), but in other poorer districts, this is Assistive Technology where the child must be evaluated to gain access to. These devices and other much more expensive models, while archaic, are live lines for students who cannot communicate.

More than that, since Daniel is unable to speak clearly to where everyone can understand him, he’s not able to participate with most family members. Any parent knows how isolating this is. Instead, we have given him a Facebook account which we closely monitor. This allows him to play games with his cousins, his aunts and uncles and grandparents. It gives everyone the excitement of being able to see how much he has grown. And as he’s able to type more, communicate with him. I don’t typically talk about Daniel as much since this site is dedicated to Autistic parent concerns, but he is truly an amazing boy who would not be where he is without technology.

A Nonverbal

Carly Fleischmann‘s story is pretty well known at this point, but it doesn’t hurt to go over it again. Her parents thought she was unable to communicate or understand what was said to her. Through her life until her teen years, she had no voice. Her computer gave her a voice and what she’s had to say is the same thing we verbal Autistics have been saying all along.

“After my story was played I kept on getting lots of emails from moms, dads, kids and people from different countries asking me all sorts of questions about autism. I think people get a lot of their information from so-called experts but I think what happens is that experts can’t give an explanation to certain questions. How can you explain something you have not lived or if you don’t know what it’s like to have it? If a horse is sick, you don’t ask a fish what’s wrong with the horse. You go right to the horse’s mouth.” -Carly Fleischmann

This isn’t meant as a “Ha! Told you so!” I believe without a doubt that most people assume because we can speak, we don’t experience the world similarly. Our ability to talk just means that the message in our heads can work with other places within our brain to control the muscles for the sound to come out. So I implore you if you have not to see Carly’s story, and if you have, look at it again. I always catch something new.

A Pioneer

Despite her appearance, Amanda Baggs, in my opinion, has to be the leading pioneer when it comes to using social media to actively show her best interpretation of HER Autism. I admire her for constantly making clear that there is no high or low functioning. I first “met” Ms. Baggs in 2007 when my Daniel was first diagnosed with Autism, before I knew what it was, and before I knew I was on the Spectrum myself. It never occurred to me that she was such a pioneer in those days. All I knew is I agreed with everything she said. On a website forum full of parents of Autistic children, she stood up and made her voice heard.

It was through her that I first found out about the Neurodiversity movement. And while I held their core values to be true long before I had ever heard of it, it just made me realize that I was not the only one to think these things. It was in her words that made me realize what I wanted for my Daniel. I simply wanted him to be happy. So we have worked tirelessly these past 3.5 yrs to make him happy. And anytime that we tried an intervention that made him upset, we stopped it. Because I didn’t want, nor do I now, him to look back and see the abuse these therapies put them through. What Amanda Baggs says helps in ways I don’t think she ever intended. I don’t see her as a “window” to my children’s brains, thoughts, and feelings. But with her words, and those of others, I have come to find what works for myself and my family to keep us moving forward, independent as we can be and HAPPY.

An Activist

Ari Ne’eman exemplifies what it means to work hard to get to where you’re at. I know he’s an easy person to turn to and say “See what we can accomplish!” He has done so much in his short 22 years and 10 months. I consider him a close friend and confidant as he will listen and offer to help in any way he can. That is completely amazing to me considering his full plate. I have gone over what he has done before, but just in case you’ve not been to my blog before or have forgotten.

1. President of the Autistic Self Advocacy Network
2. First Autistic Adult on the National Council on Disabilities
3. Board member to the Interagency Autism Coordinating Committee of the Department of Health and Human Services
4. Board member of TASH, formerly known as The Association for Persons with Severe Handicaps
5. Graduate from the University of Maryland-Baltimore County with a degree in Political Science

A Mother

Sharon daVanport to me is first and foremost a mother, to her children, but also to the many women and girls who find themselves on the Autism Spectrum. Her work started with the Asperger Women Association, but after she saw more and more events happening in the larger Autism community started the Autism Women’s Network. In the short year since they were founded, they have reached out to hundreds of women on the Autism Spectrum, as well as to hundreds more parents of Autistic girls. By bringing awareness to the sexual, physical and mental abuse that many suffer from in silence; creating a mentoring program for those new to the diagnosis; and even reaching top numbers on the Pepsi Refresh Project (currently at 26 on this last day of October voting!), Sharon and AWN have truly created a community that I truly believe is making a difference. My belief is with their efforts, they will help turn the tide into helping the many women suffering from misdiagnosis to come to their true diagnosis. As we all know, knowing what’s different is half the battle.

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While I know these are the known heroes of the Autistic culture, and that there are many more who I missed, I believe all of these people show what true communication is about. It’s not about who can speak, or not. It’s not about who can live without social networking. It’s about getting your message out there. Whether it be for your family, friends and loved ones; for those who have no physical voice; to break barriers; to change the tide; or to give hope, the place it starts is with communicating. It’s not a matter of so called functioning levels, or whether or not one can speak, it’s about letting our voices be heard. And so my hope for today, tomorrow and the rest of my life, is that our “voices” will be heard.