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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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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The above is an article from The New York Times about the president of the Autistic Self Advocacy Network, otherwise known as ASAN, Ari Ne’eman. His nomination has been placed on ‘Hold’ anonymously. As a candidate, President Obama had very high remarks for Mr. Ne’eman.

Ari Ne’eman is the Founding President of the Autistic Self-Advocacy Network, where he initiates and directs efforts to increase the representation of autistic individuals in public policy discussions. He is a leading advocate in the neurodiversity movement, frequently briefing policymakers and speaking publicly on disability and autism policy issues. Mr. Ne’eman also serves as Vice Chair of the New Jersey Adults with Autism Task Force, where he represents autistic adults in reviewing the state’s autism services. He also previously served on the New Jersey’s Special Education Review Commission, where he authored a minority report on the topic of aversives, restraint and seclusion. Mr. Ne’eman previously served as the Policy Workgroup Leader for the Youth Advisory Council to the National Council on Disability. He is a board member of TASH and the Autism National Committee. In 2008, he received the HSC Foundation “Advocates in Disability” Award. Mr. Ne’eman is currently an undergraduate at the University of Maryland-Baltimore County where he studies political science and expects to graduate in May 2010. In 2000, Mr. Ne’eman was diagnosed with Asperger’s Syndrome, an autism spectrum disorder.

His nomination marked a first and if nominated, he will be the first person with an Autism Spectrum Disorder on the NCD. As stated, that nomination has been placed on hold. In the NYTimes article, Autism Speaks co-founder Jonathan Shestack was quoted to say the following:

“Why people have gotten upset is, he doesn’t seem to represent, understand or have great sympathy for all the people who are truly, deeply affected in a way that he isn’t.”

The summation does not seem accurate. As articulated in UMBC Magazine: Winter 2009, Ari Ne’eman is very aware the difficulties faced by those not only with Autism Spectrum Disorders, but of most people with a variety of mental and cognitive disabilities as well. Mr. Ne’eman spent much of his educational career in a separate public school for those with emotional and mental diagnoses. His Asperger’s Diagnosis does not preclude him from having been placed in the same segregated, self-contained schools that the ‘Low Functioning’ Autistic students did. Who better to help write legislation and promote liberties than someone who has experienced those issues?

As well, Mr. Ne’eman and ASAN have been very active on getting The Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247) passed. While critics say the bill doesn’t go far enough, it is a very important initial legislation to stop the abuse of all students, not just those with disabilities.

In 10 short years, Ari has gone from being diagnosed with Asperger’s Syndrome to being just one mere step away from serving on the National Council on Disabilities. Through those years, he’s had to fight his segregation from the mainstream. He became a young voice in New Jersey to help those just like him. Then to founding a now national organization with several chapters across the US, not to mention affiliates across the globe. Just to be silenced again. To be segregated again. To be told that all the fighting, all the changes he’s helped to come through is not enough. That he needs to stop fighting for those who have no voice because it’s more important to find the cause to eradicate Autism.

Stand up for what’s right. Do not let Ari Ne’eman’s voice be silenced. Call your Senators, email them, write letters. If his voice is silenced now, who will be next? When are Autistic people going to be given the right to speak for themselves?

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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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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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I’ve gone to another group that I don’t feel really meets my needs. I continue to go to it, because I feel like some of the younger Aspies could use a role model, even if I’m female. But last night was different. The adults with that were there were mostly my functioning level. Though, I can tell that their major perservation is not the study of ASDs.

One of my biggest ‘obsessions’ is definitely studying ASDs, both for kids with any form of Autism and adults who are more independent. I was responding to everyone’s concerns with my thoughts and ideas. And as I explained more and more, I was drawing more attention on myself. Finally, a ‘mother of’ looked at me and asked who I was and why I was there. It was pretty scary. While I didn’t mind the attention when I was responding, the thought of having to explain myself, even for a good reason, was petrifying.

I think I looked like a typical Aspie last night. I tend to not in day to day things, but when you get me in large groups like that, I don’t exactly know what to do. So I was sitting on the floor (all the chairs and couches were taken), not making eye contact, or even face contact, rocking back and forth, and writhing my hands. When I went to speak, I did so in a stutter until I knew it was truly my turn to speak.

I plan on creating (and have a meeting to discuss this tomorrow) a meetup for ASD adults. Nothing as formal as last evening. Definitely not like the other group. But just something to get together and talk or eat or play games. I don’t have the energy to create something that was structured like last night. The event alone was overwhelming and I had to take a good 15 min after it ended to calm down enough to drive in the car.

It’s also something I’ve been working on in therapy. I was to be able to push those boundaries. Where I’m comfortable without feeling so tense. Do any of you have any tips on how you get through those events?

I will say, out of all the ‘adults with’, I was the only one that expressed having children. Quite a few expressed not being in relationships. And others were working or attempting to find a job which seemed to mean they weren’t looking for a relationship. There was a couple there with one partner that is AS. It seemed to be fairly distributed independence levels.

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What are some ways we can better ourselves and give back a little? I think a really big step for those that belong to our specific community is to find a way to bridge a gap. There is a gap between Non-Parent Self-Advocates (ASD non-parent adults), Parent Self- & Child-Advocates (ASD parents of ASD children), and Parent Child-Advocates (NT parents of ASD children).

I don’t see the two outer groups at being so different in what they want. But the message gets to messed up. ASD adults do want all of us to be accepted. Acceptance is only a piece of it. Accommodations and intervention are still key for maximum independence. NT parents want the kids to be happy and healthy. There are many who see their kids as damaged, yes. But in reality, they just haven’t been shown that their kids can get past that sometimes. Other times, the parents don’t have the support needed to help their children and are scared for their futures.

For those of us who are ASD parents of ASD children, we know how well our kids can do. At some point, we had to meet someone to become a parent. We know we were able to hold a relationship at least at one point. Some of us never had those early interventions and see some after effects of it such as mental health issues. So we can see what could have been done with ourselves and we try to do those for our children. Yes, there are sometimes that we will not be able to help our children be completely independent. But we have sometimes seen the abuse that can happen having experienced it ourselves. We know how to safe guard our children even if we have to lobby for it.

I hope that by the time my kids are my age, there will be a system in place to let ASD adults live on their own with accommodations. And I think if we bridge the gap between NT parents and ASD adults, we can get things to help all of us. Those dealing with the issues now, and our children that will deal with them in the future.

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