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.

To give a timeline, April 2010, iPad + Wifi was unleashed upon the world; Daniel turned 6 yrs old; and what was to come was still unknown. In June, Shannon Rosa wrote on BlogHer about the iPad and her son Leo. Shannon had had the amazing luck to win an iPad through a school fundraiser. From then, I researched and researched as much as I could about the iPad, iPod Touch, iPhone and the apps to go along with that help children with Autism. My husband and I also sat down and decided this year for Christmas he was going to have something to help him. We researched all of our options.

Then the last quarter of this year started. We realized that we were going to have to move out of my mom’s house. The environment had not only become unhealthy for he and I, but also for Daniel and Stephen. So all the money we had saved had to go to the move. While it was the best decision I ever made, it was also the most difficult as it came down to spending the whole of our Christmas savings. So I started searching for other options. I contacted Julie Liberman, SLP through Twitter, despite knowing her in real life, about if certain grant programs would fund an iPad. The resounding answer was “NO!!!!”

Julie didn’t stop looking and listening for a way we could get an iPad. Then one day, Shannon Rosa posted A Guide to getting your Autistic child an iPad. She first pointed to HollyRod4Kids iPad Fundraiser (think about donating to this worthy cause). I scoured their website and realized we didn’t qualify. Daniel was verbal, and living on my husband’s income, we didn’t make under the $35k/yr required. But hope was not lost. Shannon detailed that there were sites that you can fund raise on your own. I looked at both she recommended and chose our option. I talked to my husband about it, and he said that he was okay with it.

Thanks to my readership here, my contacts within our local Autism community, plus good ol’ fashioned friends and family, we started to raise money. We started with $25, then $45, before we knew it, we were above $200! I tweeted, I blogged, I updated my facebook and wrote “Note” after “Note”. I was surprised at the people who took notice. There were so many along the way that retweeted, posted the story to their news feeds. I was overwhelmed by the sheer numbers of those in the Autism community that reached out.

Then the best news yet, iHelpforSpecialNeeds added me to Twitter. At first I thought it was an app, so I went to research. They’re better than the best app! They are a start up company helping families raise funds for an iPad for their Special Needs child. It wasn’t limited to nonverbal, or income, or Autism, Downs or MR. I wrote in and told them of our efforts. As we kept exchanging emails, it was decided that Daniel would be their Featured Recipient. Through Jennifer, the wonderful lady behind this start up, we will be able to get Daniel his iPad for Christmas! Thanks to GoodKarma Applications, we will have the First-Then App to load onto it. And in the weeks to come, we will get more apps to help Daniel through each day.

And as the title says, this is only the beginning! We will sit down with the Special Ed staff the first week back to school to train them to use the iPad for easy transitions. We’ll help him learn to navigate it over the rest of our break. Don’t worry. We will have plenty of pictures of him opening it on Christmas morning. And I will keep everyone updated on his progress with it. What an amazing journey, and this is only the beginning!

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.

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.

In my last blog, I spoke of our accident, our move, and how thankful I am for what I have. But the grim reality is setting in. We have next to no money for Christmas as all the money we saved now has to go for the apartment. The move is very needed because of tension brewing within my mother’s house. With the boys both slightly regressing, my need for more therapy, and many other things, we decided it was more important to move out than to have a large Christmas.

The one thing we were hoping to get for my Daniel was an iPad or other tablet. We had already spoken to his teachers and the principal, and they all gave the thumbs up for him to bring it to school and use it as part of his program. This was a huge hurdle we managed to jump over to now have no way to provide him with the tablet.

Many of you may have read Shannon Rosa’s blog on how the iPad has helped her son Leo. As well, there’s a wealth of other articles (some chronicled on our fundraiser page) on the benefits of having an iPad as there are many applications for social skills, sensory skills and even adaptive curriculums. Most prominently known are the Augmentative and Assisted Communication apps as well. There are groups who are raising money for iPads for those with AAC needs (see Holly Rod Foundation and Danny’s Wish), but for children like Daniel, who is verbal but could use the help for transition, social and sensory needs, there is no place for families to turn.

Shannon Rosa’s latest blog suggests setting up your own fundraiser campaign. While I normally don’t like to ask other people for money, with our current situation being as it is, and how much I *know* the iPad will benefit Daniel, I have chosen to create a fundraiser. For those of us on the Spectrum, we know what technology has done for many of us. We are better connected, feel more at easy, and even more productive and independent. With the amount of apps created for those on and off the Spectrum, I know we will be giving Daniel those same tools to succeed.

Stories2Learn helps create Social Stories. iWriteWords gives a simple interface to learn to write correctly (and much in the same form as Writing without Tears). First Then Visual Schedule gives an easily recognizable visual schedule so that there is no “unknown” variable to what’s coming next. iRewardChart helps teach doing chores and creates a reward system that is fully customizable for each child’s needs. I could probably keep going for paragraph after paragraph with all the apps that have been created, but I think I will leave it at these.

If you feel you want to and CAN donate, please visit our GiveForward donation page. Or donate straight from the widget on the right side of the screen. Thank you for anyone and everyone who’s taken the time to read this, whether or not you are able to donate.

My last post was about disagreements with NTs that leave me feeling inadequate. Today, I had a great conversation with a wonderful set of moms who I don’t always agree with and who sometimes don’t agree with me. To me this is significant because it was a support & networking meeting of other parents with kids on the spectrum. I like to go because I do my utmost to show respect their view points as they often show the utmost respect to mine. I want to thank them for this because in the Autism community, as we all know, there are so many sides, that if there is constant in-fighting, we never can show others what we all know.

So today, I want to address the people who don’t always show that respect, for whatever reason. I’m doing this because I’ve been trying to pinpoint for so long what it is that causes these rifts among our groups.

1. I am not disagreeing with you because I don’t care. In fact, we all very much care about the future for ourselves and our children. If we did not, then we would not be so involved. The people who do not care so much are not the ones present, but those who remain outside the circle for whatever reason. I care so much about the future of those with Autism because I have been where they are at now, and do not want to see the heartache in their lives that I experienced in mine. I was homeless. I dropped out of college. I became a single pregnant woman. I went in and out of mental wards. And I have 2 years of my adult life that I don’t remember over the 11-12 yrs of my childhood that I have no memory of. I have been there, done that, and I will do everything in my power to make sure that doesn’t happen to a single other person. I don’t talk about these things because they are hard memories (or sometimes the lack thereof) to handle. But if you were in my position, having gone through what I’ve gone through, wouldn’t you do the same thing?
2. I am not arguing with you because I like to argue. I hate arguing. It’s emotionally, mentally and physically draining. I argue for the greater good, because I feel all the pain and suffering I go through arguing, if I can make one person understand, I have done my job. My husband has had to cradle me in his arms on numerous occasions because I literally cannot handle the after affects of these disagreements. If I had no support, I would be in a ball in a corner, but I’m lucky to have what so many others like me don’t have. Support. I wish I could thank my husband enough for what he gives me. And I know that this doesn’t excuse the arguing. In fact, if I knew how to, I’d stop the arguments. I just don’t have that, and as much as I try to learn that skill, it’s just not there yet.
3. Be understanding that I don’t have your theory of mind. If you can forgive your own child’s differences and difficulties, please try to do the same to me. I know how difficult that is as we all try to fight with professionals, and teachers, and administrators each day to make them understand our children’s invisible disability. It’s hard to look past my typing and demeanor, my physical appearance of togetherness, to see that there is a disability in there. I stay in my comfort zone, where I  know that with the supports I have in place, we can pick up the pieces.
4. Please don’t tell me what path I should take with my kids. We are all different, and we all do our best. I’d especially like to ask that you don’t keep telling me what path to take when you can see my path is working for my kids. I chose the path I did because of what I said in #1. If you would like to understand more about what we do each day for my two boys, and can see the progress they have made, please do ask. If you chose not to take that path, that is fine. But in the end, your path is not working like you expected, please refer back to #3. I cannot understand why you continue to tell me to chose a different one, when my path is working and yours isn’t. I’m not saying you’re not doing enough, or that you need to switch to my path, I’m just suggesting you look at what you’re doing to figure out why it isn’t working.
5. Helping Autism is not a sprint, it’s a marathon. Someone I know keeps using this phrase, and I keep picking it up. But it really is. The needs of an Autistic individual are always changing, and you need to keep looking at what you’re doing so that you can change accordingly. If your path (#4) isn’t working, find people who HAVE been successful on your path and get their feedback. I know that this is not what I’m ‘supposed’ to say. I’d much rather everyone take my non-evasive way, yes. But if you chose not to, there are those who have been where you are, and have had children come out on the other side with good, great or brilliant results. Find those people. They can help guide you on your road. And if at once you don’t succeed, try try again. But always remember, the sign of insanity is doing the same thing the same way every time and expecting a different result.

I hope this has helped some of you understand me. And for those who are parents on the Spectrum, I do apologize that this was not as useful to you as it was to those from the outside looking in.

I had an argument on a parent list that I’ve been a part of for just over a year. I love the organization’s leader as she’s also Aspie and great to bounce ideas on. But this recurrent theme that I keep seeing keeps leaving me in tears.

Without going into detail about the specifics, I feel that the theme is very important to touch on.

It’s about educating, training, accommodating then allowing a person to live independently. As Autistic adults, we know how hard all of these things can be. For myself and many of my known readers, we all are pretty permenantly disabled for one reason or another. We made it through our teen years some easily, others much more difficultly. This is the nature of the Autistic life.

When I drive home the three A’s of Acceptance, Accommodation and Accessibility, the recurrent idea is that these things are not happening. General population acceptance of our disabilities is definitely not there, but that’s something we will continue to work on.

What I find difficult is that within parent circles, it’s okay to be accepting of your children’s differences, but when it comes to an adult, especially another parent, there is far less acceptance, to the point of personal attack on the person. When I attack an ideology, an organization or other such things, I am not attacking a person. Yet, when I do attack these things, I find myself more often than not insulted in one or more ways. Either because I don’t “represent” the “true” “reality” for many Autistic adults, or because I “attack” or “complain” too much and am not willing to “do anything about it.” If it’s not that, then I am accused of attacking someone personally even if I was very direct in criticizing a group or ideology with no personal flings.

This is difficult enough for me to handle. But then to be further insulted that just because you live with someone with Autism, means that you automatically know what it means to live with Autism. Independence is very difficult for many of us. If I did not have my husband, I would not be considered “independent.” So when you’re supporting financially, emotionally, and/or physically, an Autistic child, it is not nearly the same thing as we “independent” adults live with every day. What happens when you’re gone? How are they going to support themselves?

Many of the programs out there cost exorbitant amounts of money to train your child only for them to live and work in a sheltered program. Is this what you want for your child, or would you rather they be “independent like me?” I know I’m preaching to the choir. But why in one breath are we Autistic parents seen as extraordinary, then in the other unrealistic in what we want to see out of programs and services to address our brethren?

I really want to understand this. My husband says I never will because I’m working from the idea that everything is logical. (He’s right, by the way.) If you want your child to be independent, to not want to worry about what happens to your child when you are no longer around, or no longer able to take care of them, why do you scoff at our ideas? Is it so much to ask that instead of training a person to work in a sheltered workshop, that you instead give the supports to work in a normal workplace? If they are having a hard time coping with certain work situations, why are you taking them out of the workplace and putting them else where? Wouldn’t 1) Emotional and Job support, 2) Life Coach or 3) Job liaisons help the person stay where they are qualified to be as well as give them the skills to take it to another place?

In the end, if they can no longer work in the sheltered workshop, where will they go? Most likely to a group home or institution if you as parents are no longer able to support them or be there. How is that helping the person? And do you truly think about these things when you set up the “great” programs? Or are you just looking for the next year or two?

It keeps going round and round. And until someone stops to think, I do not think it will ever change.

The morning started out with the keynote address by President Obama staff. I was very enthused by the fact that Mr. Lee Grossman, president of ASA, wants to reframe perspective from just medical issues with Autism, but to a whole life, whole person approach. What did not leave me nearly as enthused was the actual keynotes. I was upset by the generalities with no real precision on what the plan is for those of us living with AS. With a mental health system that’s not equipped to handle us rampant throughout the US, housing issues, along with job issues. You’d think some more concrete plans were being laid. Instead, it just showed how ill-equipped this presidency is to help our population. I wish I could work, I really do, but as of now, I can’t and a lot of it has to do with poor social services plans.

I made my “escape” early from the keynotes, when they started asking questions. The poor acoustics plus the frigid air left me in utter pain. Luckily, earplugs handed out during the workshop the day before kept me in there for that long. I’m really glad that by Day 3 they had most of these acoustic issues worked out, but the air stayed frigid throughout the conference. Shortly after the key notes, I found my way to some comfy chairs. I received a tweet from Alex Plank, creator of Wrong Planet and keynote presenter of Day 4, saying to call him. He was doing interviews, but I sadly never got around to giving one. I also met Lindsey Nebeker, who has just opened up her blog Naked Brain Ink which talks about relationships for those on the Spectrum. Along with Jack Robison, John Elder Robison’s son, and Autism Talk TV representative, Alex, and Lindsey, I sat in the lobby and chatted as 4 Autistic people do. I think we may have looked odd to the ‘outsiders’ as one lady got up and walked away at the congregation started. Lindsey did a really awesome interview for Autism Talk TV with Alex. I was particularly amazed at her presentation as she looks quite suave.

Following the 3 hour discussion between the three of us, it was off to view panels I had highly anticipated for the month following up to the conference. First stop was with “Anxiety, Depression, Post-Traumatic Stress: The Effects of Bullying on Individuals with ASDs”. I knew going in that I was not their target audience. Having experienced Bullying and abuse from those in my life, I was very pleased with the way they presented it for teachers and therapists who had not thought about it. I think they did leave out a few things, such as bullying from siblings and parents. Things such as bullying from teachers, which my brother suffered, to where it’s difficult to come forward with the abuse. From other students, but not realizing it for years later. I suffered from this kind of bullying. Being naive and innocent, it does not help when you look back on your life. Ignorance is not bliss, and I think they made that pretty clear. Many of the strategies that I am doing with my therapist were the same that they gave example to. Cognitive Behavioral Therapy, which means so many things, is definitely the psychotherapy of choice that I will continue to use, and if ever needs be, I will have my boys do.

Unintentionally after that panel, I walked around the Exhibition Hall for 2.5 hrs. Like I said, unintentionally, it was however worthwhile. I made a lot of great contacts and got lots of information for pet projects that I’m contemplating. One company, gave me information on creating boundless and sensory playgrounds, which is something within the next few years I really want to do. I spoke with the Director of Programs of ASA for quite some time and some of her pet projects would be incredible for the adult community. I really hope that the rest of the board will some day hear those ideas and pick them up. I will not go in depth for obvious reasons that they are not even on the playing field yet.

Many of the companies that publish books were there. I really wanted to approach one, but did not. So I listened. I was very happy to see Bittersweet Farms there. They gave me information as well. They are hoping to expand their style of adult care across the nation. I think this would be wonderful as it seems like the type of place that my oldest could really flourish. I will be speaking with some local people about that. If you happen to be in the Dallas area and would like to understand more, please contact me.

That evening, while at the Exhibit Hall Opening Reception, I kinda, sorta, bumped into (not physically) Lisa Jo Rudy who has just released a book Get Out, Explore, and Have Fun!: How Families of Children With Autism or Asperger Syndrome Can Get the Most Out of Community Activities. She had given a presentation during the morning hours that I was sitting with the other bloggers. While I had been so disappointed that I did not get to her panel, I was extremely happy to see her. We ended up talking until they closed the Exhibit Hall down. Her most helpful tip that I will definitely be using next summer, is to buy membership for the different museums. That way when someone is about to meltdown (adults or kids in our case, lol), you can leave and not feel you’ve spent a terrible amount of money for only 30-60 minutes. You will be able to go back and enjoy it again and again. Please check the book out. I know I will be!

That was the end of Day 2. And while it wasn’t filled with many panels, I was very happy with how the day progressed. I will be wrapping up my post for Day 3 within the next few days. I hope you all can learn a little bit more.

A month ago we were celebrating the boys’ birthdays. Subsequently, we also had to plan for their yearly IEP meeting. All of those events went well and as planned. Since then though, I have noticed my 5 yr old (the youngest) has become much more impulsive. It’s really been building up. He already has sensory issues, his ASD diagnosis, but it’s becoming ever so clear he is definitely ADHD.

He has no patience. He used to be really good at waiting the 5 minutes for us to stop what we’re doing before attending to his needs. Now he has a hard time waiting more than 30 seconds.  If he doesn’t get what he wants, he lashes out then immediately apologizes. So he knows what he’s doing is wrong, but doesn’t seem to have that process time before he does the action.

So my choices are many. We’re going to implement a ‘Good choices, Bad choices’ system. For every good choice, he gets so many tickets which can be redeemed for things he wants. They use this in the floortime group we have him in and it works for them.  When he makes bad choices, he gets tickets taken away. So he can always do lots of small ‘good choices’ to gain tickets back for a bad choice he did. We need to get a new sensory diet in place as his sensory needs have changed. I really want to try everything before looking up psychiatrists and neurologists to take him to.  We are also thinking about ways to add caffeine to his diet in very small doses. He generally doesn’t like most things with chocolate, won’t drink any drinks that typically have caffeine, so it will be difficult to add it. We’re hoping to see some of his more nervous energy tempered a little. I just don’t want to give him any medication if we don’t have to.

What changes do you think would help? I’m at a loss of where the sensory issues begin and end, where the Autism issues begin and end, and where the ADHD issues begin and end. I can relate to my older son much better because he and I come inward when we get overloaded, but sadly, that is not the case for my younger son.

Three things have happened in the Autism world. Parenthood started airing on NBC last week. Last night was the second episode. The episodes are also available to watch online if you’re like me and don’t want to admit you’ve watched it. One of the three families has a son that was diagnosed with Asperger’s in the first episode. A lot of parents of Asperger’s kids said they really identified with the parents. What became apparent was that Asperger’s children are still seen as not having acceptable ‘behaviors’ to stay in their placement. The boy was being kicked out of a private school in the same episode. Just another place where Asperger’s is not accepted and accommodated.

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Next up is the character known as Michael E Robinson, Jr. (link to original article) He is an acquaintance and all of his ‘facts’ are what he professes to be true. As you take a look at the article, the fact checking shows that most if not all his facts to be false. He has great zeal and passion about what he’s doing. The problem is, he has been alleged to have scammed money from parents, taking others work as his own, and tends to over-embellish his abilities. His numerous claims identifying him as an ally to the Neurodiversity community are false.

It does leave the question, why would he do such things?

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Lastly, Autism Speaks has nominated John Elder Robison to their Scientific Advisory Board. J.E. Robison is most famous for writing the memoir Look Me In The Eye: My Life with Asperger’s. On the surface, this looks promising. Autism Speaks is finally accepting a person with an Autism Spectrum Disorder into their community.

But what looks good on the surface is not so widely accepted by the Neurodiversity community at large. Mr. Robison states in his acceptance:

Research into causes of autism is important, but I want to see more research aimed at remediation of specific components of autistic disability.

While he sees remediation as a goal, the troubling part is that he wants to still research in causation. The subject has been rehashed again and again. The only true reason to research causation is to find a cure. A cure many do not want for themselves.

To go on, this is just one appointment. The Scientific Advisory Committee has 30 members. He can make an impact in the committee. Perhaps another 5% of research grants will go to Quality of Life research. This does not help their Awareness campaigns that show Autistics to be trapped and hopeless. They do not preach Acceptance. If they did, more than just one Autistic person would have been nominated. They continue to take desperately needed donations out of the communities. What little they do for the Adult Autistic community is hold online “townhalls” that cost $100s to get into which circumvents most Autistic Adults attendance!

This is very displeasing to many. To try to work from within is a noble cause, Mr. John Elder Robison, but the naivety that just one man can change the whole of a community so rooted in fear, anger, deceit and hate could be damaging for us all.