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.

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Ms. Zosia Zaks was unable to present at the conference, for undisclosed reasons. As a result, Dena Gassner presented the morning portion of the workshop. You may not be aware, but you may have seen Mrs. Gassner if you’ve watched any PSAs put out by the Dan Marino Foundation and ASAN. She was a lovely woman who had a lot to share about learning yourself so that you can effectively navigate and advocate for yourself.

This was not that unfamiliar with myself, but I could tell a lot of “new” Aspies had not thought of this before. As a result, a lot of people shared about their personal experiences when it comes to social inadequacies and sensory issues. This discussion was ended with a tour of the entire ASA conference “grounds”. There were 3 floors, several hallways, several stops, and a quiet room (which turned out to be not as quiet). I ended up having a very easy time learning the layout because of this tour. This also gave us an opportunity to speak with the different ASA representatives who were able to help us in case we needed anything.

Following that was a boxed lunch in a general hall for all workshop attendees. I should have known to take my lunch elsewhere, but I didn’t. This is my own fault. I ended up sitting in the room with several hundred other guests. I did end up meeting a lovely woman who is a teacher in Round Rock. She and her co-teacher sat with me to talk and I was more than pleased with how inquisitive they were. I ended up leaving early as I became overwhelmed quickly.

The latter half of the workshop was not nearly as insightful as the first portion. We were able to do Art projects that were displayed all conference long. I did not finish mine, but as it did not show my name on the front, I was not ashamed to have it show. (Now that I think about it, I never got it back.) We listened to another lady who’s name escapes me now. She has had a tough time advocating for herself, and gave us examples and tools to help advocate for yourself and when needed have others advocate for you. Again, I think a lot of people, this put some perspective on how difficult it can be. I was happy to see others making note. Her daughter, Missy, also gave a small speech. She’s a junior high student on the Spectrum. Very nice for her first public appearance.

Lars Perner ended the day. While I was delighted with his jokes, I had hoped he would delve more into Aspie humor, than how Aspies don’t often get humor. Alas, that did not happen. Nor did the Leadership portion because of our unattended presenter. I really hope to be able to get more information on Leadership skills, but perhaps later, or next summer.

I know there was very little to this day, but there were more the other three. I will have those installments as I have time. Because of the energy exhausted during the 4 days at the conference, I ended up having to take a week off from most major duties. As a result, my memory is trying to lapse into “long term” from “short term” in these events. I did leave out some of my more unfortunate experiences as they weren’t because of the conference, but just happened to occur at the conference.

Until next time….

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This week, the Autism Society of America is having their annual National Conference right here in the Dallas area. Thanks to the Autism Society of Collin County, I will be attending the entire conference. I’m especially looking forward to Zosia Zaks’ (author of Life and Love: Positive Strategies for Autistic Adults) pre-conference workshop, Making a Name for Myself: Developing Individual Self-Advocacy and Leadership Skills. As well, Sandy Yim, Alex Plank, creator of WrongPlanet, and Jason Ross are delivering the keynotes on Saturday, Making Connections Online: Communicating through Blogs and Online Communities.

As well, on Saturday, I will be speaking on the Speaking for Ourselves: Individuals on the Autism Spectrum panel. I feel I’ve come up with a pretty concise evaluation of my life for my 15 minute speech. As well, there will be 3 others to speak. For those coming to the conference, I invite you to come to the panel. For those in the Dallas area, Saturday is discounted to $50 per person, so I would also encourage you to come for that day. Included are presentations for fathers, grandparents and Spanish-speakers.

I will be tweeting from the conference as well. Luckily, there is a sensory room available. There will also be lots of vendors to peruse. I’m hoping to make some contacts. I have made business cards for both this website and for ASAN, Dallas chapter. As well, I have 3 t-shirts that I will be wearing to show my devotion to Neurodiversity and one with the website logo on it. I hope you will all keep up with what’s happening through the tweets. Feel free to follow me on Twitter!

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I’m so thankful to Leigh and all the editors at The Dallas Morning News Moms’ Blog. They really help to get the words of Neurodiversity, understanding and support out to our larger communities. I wanted to give everyone the chance to go over and comment on their blog.

Today’s guest blog is about nonharmful ‘behaviors’. With the work that each of us puts in each day, allowing ASDs the opportunity to stim is the least a family can do. I put it more eloquently than that though. Hope you enjoy.

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For those unaware, most Special Needs catalogs have whole sections of products for Sensory Integration. Everyone suffers somewhat from sensory issues, and most of us Spectrumites do quite a bit. I often dream of making a sensory ‘floor’ on a 2 or 3 story house. One for each member of the family attuned to their sensory needs.

To that end, I have decided to share my ‘stash’ of Sensory catalogs I have come across. All of them you can request catalogs from for free. There are some that will keep you on their mailing list and send you a catalog each new season. Each one you can get roughly the same products from, but each has it’s unique items you can’t find elsewhere. All links go to their Request Catalog page as they can sometimes be difficult to find, but keep in mind, most if not all have their catalogs available online as well. I just prefer copies I can take with me to write or put stickies in.

• School Specialty (formerly Abilitations and Integrations) gives various options depending on what you need. I get the Special Needs catalog as well as the Sensory, Learning & Behavior Solutions catalog. My favorite product, which is from their own line, we ordered from them is their Gel-E-Seat as it’s multipurpose. It serves as a weighted lap rest, a movement seat and a fidget. After two years, including a move across country, two very rough preschoolers, it still serves it’s purpose, though has lost some gel. I would still recommend if you have a sensory room. I found it calming as a fidget, my boys used it for it’s other two purposes.

• Southpaw Enterprises, similar to School Specialty creates it’s own line of products. We have yet to order anything from Southpaw, but that’s not saying a lot. We try to find things locally. However, I’m relatively confident that the wonderful therapy center we take the boys to uses their products.

• Therapro, Inc while I’m not aware of their own product line, I am impressed with the items they do have. It’s all well arranged and you can find things in their catalogs that I haven’t seen in any others. I very much recommend their catalogs.

• Flaghouse catalogs are the ones that Leigh was speaking about on her blog. I would recommend reading her blog for information. I have requested my catalogs from them and may update this post later.

• Fun and Function found me today on Facebook. I immediately looked at their digital catalog and found an item I want. They have several types of weighted clothing, but it’s the first time I’ve ever seen a weighted cap. Their multisensory section while it has some large dollar signs give great ideas on how to create a soft ambient room for calming.

What I typically do is keep these around and refer to them to teachers, therapists and other professionals. I’ve given old copies away to new therapists as they often don’t have their own collection yet. You can also pretty reasonably find gifts for friends and family in them as well. You obviously need to be attuned to their sensory issues, but they make very personal gifts. Of course, they are also great to refer to if someone doesn’t understand quite what to get for you as well (only kidding!).

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Autism Awareness means…

Autism Awareness means a lot of things to a lot of people. To some, like myself, it is hope for the future. For adults with Autism, awareness brings the chance to spread a message of acceptance, accommodation and accessibility. Our hope for the future is to have the outside world understand ‘our kind.’

I hope this not only for myself, but for my two Autistic children as well. Our family believes in Neurodiversity. Neurodiversity states that neurological conditions are a normal human variation. The abnormal neurology gives each of us areas of strength as well as various difficulties. Those areas of strength and deficit can vary greatly between each individual.

The hard areas that can be, should be treated. Intervention is still one of the best predictors of independence as an adult. What can’t be treated though should be accommodated. Other areas should be accepted. Is the behavior harmful? Does it cause the person great stress? Those are some of the questions we on the spectrum ask parents to think about. The most important aspect though is that we have access to all the things that can help us be meaningful contributors to our communities.

Autistic people from all functioning levels can be helped by the goals of Neurodiversity. Accessibility gained to keep a person in their own home rather than be institutionalized. Accommodations can be made to find employment, much like the programs by Department of Assistive and Rehabilitative Services. Alternative and Augmentative Communication devices would help relate to others their needs. For children, Neurodiversity means equipping their peers with social awareness to prevent bullying and promote acceptance of the unique differences.

All any parent in this world asks for is a happy, healthy child. Proper treatment, awareness, and acceptance can help all parents achieve that. You can start within your own communities, your own schools and playgrounds, or even your own home. Love and compassion begets acceptance. Everything else will start from there.

I hope you all enjoy. Those of you taking a look at my website for the first time, I welcome you.

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April in my household means 3 things. It’s the start of the Autism year. It holds both boys’ birthdays. It is the start of Spring. Although, depending on your family history, you may also see it as National Child Abuse Prevention Month, Stress Awareness Month, Alcohol Awareness Month and a host of others. Does anyone else find it odd that Autism Awareness shares a month with the three I’ve listed?

With the fear campaigns that go along with Autism, you’d think they picked it just for the three above. They try to show increase in child abuse in families with Autism because of a ‘lack of services’. They definitely say it’s more stressful to be a parent of an Autistic child. When you mix all of those together, surely you get an increase in Alcoholism.

But I digress.

April 2, 2010: Light It Up Blue

World Autism Awareness Day.Org

“They” will be starting tonight. Across the US, the Light It Up Blue campaign started by Autism Speaks in honor of their World Autism Awareness Day has encouraged major buildings to turn blue for Autism. I know AutSp’s puzzle piece is blue. They have also asked that people wear blue on Friday April 2, 2010 to show their support. To me, this just shows support of AutSp’s mission. I have made sure to tell everyone I know not to wear blue tomorrow.

Instead, a variety of suggestions have been tossed around for those of us that want to show our support to Autistic people (including ourselves). I have chosen to generally ask others to wear a Spectrum shirt, ie something with rainbow colors. I know rainbow usually signifies Gay culture, but it is also a spectrum that signifies the Autism Spectrum. Conversely, you can choose to Infinity Symbol (like above), the Autistic Pride Flame, the “I’m not a Puzzle” shirts, so on and so forth. The key idea is to stay away from puzzle pieces, puzzle ribbons and solid blue.

As this month goes forward, my goal is to attend as many of the Autism Awareness events I can. Make sure the ND presence is known off the internet. And of course, execute a well planned birthday party for my two Autistic kiddos and their non-Autistic classmates. Integration works!

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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.

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As most are aware now, DSM-V proposed changes were released today. I’ve had a chance to look over the criteria changes for Autism Spectrum Disorder.

Autism Spectrum Disorder

Must meet criteria 1, 2, and 3:

1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:

a. Marked deficits in nonverbal and verbal communication used for social interaction:
b. Lack of social reciprocity;
c. Failure to develop and maintain peer relationships appropriate to developmental level

2. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:

a. Stereotyped motor or verbal behaviors, or unusual sensory behaviors
b. Excessive adherence to routines and ritualized patterns of behavior
c. Restricted, fixated interests

3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

I look at this from both an adult stand point and a parent stand point. My primary concern is with Criteria 1b. Social reciprocity can often be for children not noticeable until later in years. This can possibly lead to a lower rate of diagnosis in those children in the early years. I suspect though, that most children that don’t show the difference are probably not diagnosed until later at this point anyways.

But as an adult, I know the rules of social reciprocity. If someone does something nice for me, I must do something back. If someone compliments me, I should also compliment them. I can perform these responses. Whether or not they are learned or out of genuine feelings is where the problem lies. As an adult that didn’t get diagnosed until I was an adult, I can see where other adults that may seek a diagnosis would fall through the cracks on this one. Many of us have learned and adapted our skills, but still have other areas of concern.

I can honestly say I have a hard time making and keeping friends. Only those that have stuck by me out of sheer determination from their point of view are the ones I keep. When I try to keep track of friendships, I ultimately fail. And again with the 1a, I know there are times when I miss nonverbal cues. It’s the idea that you have to meet all 3 that is troubling to me. Especially since it’s all speculation on the part of the diagnosing party whether this is a learned response or a genuine feeling.

However, I am very happy to see the addition of Sensory behaviors added. My youngest certainly doesn’t do any of the stereotyped behaviors any more, but has more than enough sensory behaviors to make up for it. This addition I think will help a lot of parents that are on the fence. Not seeing the spinning or flapping hands no longer means that you ‘might’ have a child with Autism.

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Parents avoided our gaze, for the most part. Not those that have come to know our family, but some of the others. I tried to keep him away from others because he was flailing and I didn’t want anyone, including him, to get hurt. Every so often, he would rejoin his classmates/friends for a little while.

The older brother of the birthday girl (here forward pseudonym ‘John’ will be used) was very interested and kept trying to talk to myself and my kiddo. He reassured me. He reassured my boy. After a little while, I decided to go ahead and tell him that Daniel has Autism. We haven’t put a word to it with the boys yet because within our household, they are pretty ‘typical’. John said in an instant, ‘I thought so after he came inside the house.’

John went on to explain the horrible things that Autism does. He was describing a boy he knew at school. And by the sounds of it, the boy he was describing was non-verbal and possibly violent. He didn’t seem to feel the same way about his classmate as he did about my son. After a little while, I told him I have a lot of the same problems, but with age have overcome them.

He was instantly confused, I think. He started asking me questions about how I overcame it. What was it like to be Autistic? How did you overcome it? I tried to explain that large crowds still are difficult, and that for some issues I have to take medicine. But this little boy, no older than 11-12, had never heard of being able to help some of the disabling aspects of Autism. In an instant explaining I had Autistic characteristics, it was like his world changed. I was there, with my Autistic son, being Autistic myself.

The part about this that is most complicated, how do we change the perception of these kids? When adults, parents, are showing them the ‘bad’ parts of Autism, that is what they’re learning. We may be combating the parents, but I think we also need to help these NT kids understand Autism isn’t a bad thing. We will be fighting against this message for generations to come because they don’t hear anything else.

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