Category Archives: Misc. Autism topics

Noteworthy Notices

Every now and then, I receive an email from someone affiliated with an organization that supports ASD individuals and their families asking if I will post a notice about them on my website, and I am more than happy to do so. I am honored to be asked. When I started this blog/website over a year ago, I had hoped for it to become a resource for other parents and those on the spectrum, as well as a way for me (and my sons) to connect with them. Passing along helpful links and information is one way to accomplish that. It is my pleasure to highlight the following organizations:

  • Autism on the Seas provides group cruises for adults and families living with autism and Asperger’s. They specifically accommodate children – and adults – on the spectrum, partnering with Royal Caribbean International and Disney. “We’ve made cruising with autism our expertise,” they say, and their website lists numerous testimonials from happy patrons. I am definitely considering this for a future trip!
  • Possibili-Tees is a non-profit 501(c)3 organization that does custom screen printing. They exclusively hire those with autism and other developmental disabilities to print shirts, hats, and other items for camps, schools, sports, conferences, and various events. You can also purchase shirts individually on their website.
  • The Phoenix Zoo has begun fundraising for the 5th annual Zoo Walk, which is on October 17, 2009. Their goal for 2009 is to raise $150,000 for a study of several autism treatments, including diet and nutritional supplements in 100 children and adults. Join them for a great family event and support research on effective treatments for autism!
  • Rethink Autism is a web-based autism treatment platform that helps parents and professionals design individualized, affordable programming to meet each child’s learning goals, while state-of-the-art data-tracking systems allow users to track the learner’s progress. Using ABA-based methods, the video curriculum includes hundreds of exercises and training modules based on proven teaching techniques. The lessons target a comprehensive range of skills in critical developmental areas such as language and motor skills, social and emotional learning, and daily living. For parents who are having difficulty obtaining behavioral treatment for their children, this is truly a valuable resource. Please click on this link to see a video of a CBS News feature about the site:  http://wcbstv.com/video/?id=130578@wcbs.dayport.com

Our Path

“You can go your own way” – Fleetwood Mac

Right after our highly successful trip to Oregon Caves this past weekend, we decided to drive another hour and a half that afternoon to Redwood National Park on the northern California coast. Apparently a scene from Walking With Dinosaurs had been filmed there, so Nigel had to act out the part with the sauropodlet (as Nigel calls baby sauropods) eating fern fronds.

At any rate, the boys and I loved roaming among the quiet, steadfast giants, and Nigel had fun climbing on the trunks of the fallen. Not wanting to violate any park rules, I checked for signs forbidding climbing. I didn’t see any, and Nigel was being careful, so we went on our way. At the end of the walk, we found some signs facing the other direction. I turned around and read one of them. “Stay on the trail,” it said.

At the end?! Why would they wait until the end of the trail to tell visitors that? I looked around and then it hit me. We had begun the trail loop on the wrong side. We went in through the out door. We finished where others started. But we started where others finished.

That’s how it is when autism is in your life, for the ASD kids trying to figure things out as well as for their parents. We do things differently. Our path is not the same as others’ paths. Sometimes we have to approach things differently to understand them. It may not be the expected way,

but somehow we get through it.

And sometimes it helps to just stop, take a breath, and look up.

Signs of Teen Autism

This week, the greatest number of page views for this site as a result of an internet search was for my recent post centered around Tigger. He’s one popular cat, apparently. But the second most common search that yielded this website was “signs of teen autism.” I figured that subject warranted a post of its own.

I thought about it and realized that there would be primarily two groups of people who could be typing in that search:

a) either a parent, relative, or teacher trying to figure out a possible explanation for the different characteristics of their teen

b) anyone wanting to know how to recognize autism in the teen years, perhaps because they think they’ve come in contact with an ASD teen in their community

First of all, in the teen years, the signs of Asperger’s and high functioning autism are so similar that many people think that there is no difference between the two. Both have much difficulty with social skills (e.g. random, little, or no eye contact while conversing; random, little or no voice inflection; compromised ability to read facial cues and body language), often exhibit reactions to sensory issues (e.g. being easily startled by noises, covering ears; running away from bees and other flying insects), have a great need for routines and rituals, and exhibit obsessions with particular “specialty interests.” How, then, does one tell the difference between Asperger’s and high functioning autism in teens? The difference lies primarily in the child’s early development of language, although there are other differences as well. In cases of classic – or Kanner’s – autism, language development was very late, labored (took many years), or did not occur at all. My son Nigel falls into this category because his language acquisition was quite late and labored. Asperger’s, by comparison, was nicknamed “little professor syndrome” because the young children observed by Hans Asperger were quite verbal, but they often fixated on certain topics and exhibited some differences in social interaction. Because they can talk, many children with Asperger’s are not diagnosed until later, so the searchers listed above in group a) are most likely trying to identify a teen with Asperger’s.

For the group b) people, THANK YOU for wanting to find out. Thank you for caring enough to take the time to do so. We parents of ASD teens truly appreciate you.  You’ll find some characteristic signs of teen autism listed in bold green in this post (which you probably already figured out, because you’re a smart person for seeking out the information in the first place). You’ll also find some tips for interacting with an ASD teen in my post Getting to Know an Autistic Teen. If you’re looking for signs of autism in teens who are more profoundly autistic, in most cases they will not be mainstreamed in regular school classes, and when they are in the community they will be with a parent or someone else accompanying them. They exhibit little to no speech or echolalic speech. They may also exhibit more reactions to sensory stimuli especially in noisy, crowded places and may make repetitive body movements (spinning, flapping, rocking). Autism manifests itself differently in every person affected by it, so these traits, in addition to those listed in the previous paragraph, may or may not occur and in varying degrees. One thing’s for sure – you’ll find that people with autism at all functioning levels are wonderful, fascinating individuals worthy of your time, interest, and respect.

April Announcements, Vol. 3

One more Autism Awareness Month announcement to slip in here!

Kyle’s Treehouse recently launched a new initiative for April’s Autism Awareness Month: Autism151, 150 stories of hope, strength and inspiration.  Autism151 focuses on the positive side of the autism experience by creating a single location where families can share stories of strength, inspiration and success with one another, giving them even more reasons to hope. Where does the name Autism151 come from?: 1 in 150 children are diagnosed with autism. Until now, there have been few resources for those living with autism to come together as a community to share ideas, resources and most importantly–success. Autism151 is about inspiring families with stories of success. It is a vital resource reminding families that they are not alone in their struggles and helping them celebrate their achievements. The campaign’s goal is to gather 150 inspirational stories by April 30, 2009 and post them online.

Kyle’s Treehouse and Autism151 are calling upon you to tell someone you know coping with autism to share their story of hope and join the movement at http://autism151.com/. There are wonderful stories of hope everywhere. Kyle’s Treehouse and Autism151’s goal is to bring them together in order to share them with each other and the world. So please visit http://autism151.com/, upload your video story and share it.

Visit. Upload. Share. Autism151

150 Stories. One Community of Hope.

April Announcements Vol. 2

Here’s an interesting program that I’ve been asked to post about for Autism Awareness Month:

“Ask.com is now featuring a new homepage theme every week in April for Autism Awareness Month, designed to educate consumers about autism, a complex neurobiological disorder affecting one in 150 people in the U.S. Ask.com donates $.50 to Autism Speaks for every new consumer who selects the Autism Speaks Skins as the design for their personalized Ask.com homepage. The Skins display a series of questions that challenge consumers’ understanding of autism; for each correctly answered question, Ask will donate another $.01 to Autism Speaks.

“Consumers don’t have to spend a dime to support this important cause. Simply choose one of the Ask.com skins designed especially for this initiative, and we’ll make a donation – it’s that easy,” said Jim Safka, Chief Executive Officer of Ask.com.

The Autism Speaks Skins feature photos of children with autism as well as original art by Andrew Bianchi, a 10 year-old boy with autism from New York. Every new homepage skin generates four questions and several answer options. Consumers can use Ask.com at any time to find the answer to a question; simply answering a question correctly is counted towards the total donation amount. Ask.com is promoting this special program directly on the Ask.com homepage several days throughout the month of April, as well as in the Ask.com Skins Gallery at www.ask.com/skins.

“True to their reputation for innovation, Ask.com has created a unique program where everyone wins: we gain awareness and support for our cause, consumers gain knowledge about autism through an engaging and thoughtful user experience, and Ask.com has an opportunity to connect in a meaningful way with consumers who also care about this cause,” said Scott Leibowitz, national director of corporate relation for Autism Speaks.

April Announcements

I’ve been contacted by a few companies/organizations that would like to get the word out on Autism Awareness Month happenings, so I thought I would post a notice about them to let everyone know.

First up is TRP Wellness! This company features DVDs on OT/sensory issues and yoga instruction for special needs children, a section with tips and resources, a blog, and a newsletter. From now until April 30, in honor of Autism Awareness Month, their OT/sensory issues DVD series is on sale at 20% off! Just enter the code “April2009” at checkout.

Next, Autism One would like to announce that May 20-24 they will host the “Change Has Come” conference in Chicago, Illinois. This conference is a great opportunity to learn more about what you can do to immediately start helping your child, confidently and economically navigate the medical intervention terrain, learn how to talk to your pediatrician to get the tests your child needs, and meet other parents. Click here for details.

Lastly, be sure to check out all the events that your local chapter of the Autism Society of America has planned for Autism Awareness Month. For instance, here in Oregon, the Autism Society of Oregon is hosting the “Take a Break on ASO” program, which gives gift cards for dinner out and a movie, with reimbursement for 4 hours of respite care! They also have many other activities planned for the month. If you’re not sure of your state’s website (some states have more than one chapter), go here to see a listing of contact information for each state. Have a great April!

Doing More

Advocacy is important to me – it’s part of why I blog. I also want to teach my kids that we’re here to help each other out. I encouraged Nigel to participate in a Habitat for Humanity walk last year, he does Scouting for Food with Boy Scouts, and he and Aidan often go with me to donate to local charities. In that vein, promoting autism awareness comes naturally to me.

My good friend and fellow blogger, Jenn at Devin’s Journey, wrote a few days ago about today being World Autism Awareness Day. I love the thought of that, seeing as autism knows no political borders. Not only did Jenn remind us of the day, she asked what we were doing for it. Aside from my ongoing campaign to eradicate the r-word from my workplace, I thought of more that I could do.

First of all, I’m doing something close to home, because there is still so much that needs to be accomplished right in our own backyard. So today I’m going to email the principal at Nigel’s school and restart my wheel-squeaking about implementing a Circle of Friends program there. I had sent the principal a link to the ABC News autism page, which features a video that discusses ASD and bullying, and how beneficial the Circle of Friends-type of program has been for the school in the video. I sent the link in an email almost three weeks ago and haven’t heard back yet, so it’s time for some serious squeaking.

I also think that today is the perfect occasion to announce my plans for this summer. I have posted previously about Knowledge for People, a non-profit dedicated to autism education and outreach for developing countries. In July, they are going to Nepal, and I am thrilled to be joining them (!) as a parent liaison and sensory issues presenter. It’s one of those “opportunity knocks” situations – my boys are with their dad in July, I’ve always wanted to go to Nepal, and things just came together, as they so often do when something just feels right. I am so excited to be doing this! Not only to have the opportunity to go to Nepal, but to have the opportunity to help others understand autism and learn how they can help their children in a place where knowledge and resources are so limited. With all the hurdles we face here in the US with getting services for our children, at least the services exist, at least people have heard of autism. At least we can do something for our kids. All parents – everywhere – should be so fortunate.

It’s a done deal, folks. I’ve got my tickets, my backpack, and my spirit of adventure. Just doing my part for World Autism Awareness, one country at a time.

An Easier Interview

In case you haven’t had your fill of me yet, I’ve been featured in another interview. This one was far more enjoyable for me than my TV appearance! Deborah at 5 Minutes for Special Needs was kind enough to ask me a few thought-provoking questions, and I was only too happy to answer them, especially since I wasn’t being filmed! So if you’d care to mosey on over, check out my interview with 5 Minutes for Special Needs, and check out the site while you’re there, if you haven’t already. It’s a great resource for fun and practical ideas and inspirational stories. Thank you, Deborah!

Someone’s Listening

Too often, we feel like we’re talking ourselves blue as we try to advocate for our special needs children. It feels like no one’s paying attention, like the only people who care are the ones who are in the same shoes. It doesn’t seem like anyone who could really make a difference is taking notice. Well, someone finally did.

I got home from work yesterday and showered, getting ready to go see a movie with a friend. As I was preparing a quick dinner for myself, the phone rang. I answered, and it was someone from our local news station requesting to come and interview me (!) about “the new Oregon Commission on Autism Spectrum Disorder that was created by the Governor today” (!) “Wow,” I said, grasping for a semi-intelligent response since a) I hadn’t managed to catch any news yet and had not heard about the Commission, b) they’d probably gotten my contact info from the Autism Society of Oregon since I’m a Chapter Rep, and I didn’t want to sound completely ignorant, and c) I’d never been interviewed by the news before. (!) To be on TV. (!) At least I had already showered.

After we set up a time to do the interview, I ran around cleaning the living room, of course. Then I did a quick search to get some info on the Commission and our illustrious Governor here in the beautiful state of Oregon, which yielded the following:

Governor Creates Commission on Autism Spectrum Disorder

(Salem) – Today Governor Ted Kulongoski signed Executive Order 09-07, creating the Oregon Commission on Autism Spectrum Disorder (ASD). The commission is charged with creating greater coordination and planning to better engage and provide services for individuals experiencing ASD and their families.

“Oregon, like other states, has seen a dramatic increase in the number of children diagnosed with Autism Spectrum Disorder,” Governor Kulongoski said. “This commission is an important first step in ensuring that individuals experiencing ASD and their families receive the services they need to face the challenges that come with the disorder.”

Across Oregon, services to people experiencing ASD have been fragmented and inconsistent, resulting in poor coordination with the various agencies and entities that provide services. The commission will make recommendations to increase coordination and collaboration through the identification of policies and strategies that will improve interagency agreements and address funding issues . . . “This commission will help make sure Oregon is incorporating all of the best information available on autism in treating and supporting those experiencing ASD,” Governor Kulongoski said. “The commission will also ensure we are getting the maximum benefit from local, state and federal resources.”

And then came my 15 Minutes! (Um, more like 15 seconds.) Unfortunately, I’m unable to embed the video right here on this site, so you’ll have to click on this link to view the two-minute news feature that aired in southern Oregon last night. They put me on twice! Not bad for an introvert, eh?

Knowledge for People

Every once in a while I think about the fact that, living in a developed country, we have so many autism resources available to us that are not available in developing countries. And not only resources, but the knowledge itself. The knowledge about autism. We know that it is not the mother’s fault. We know that the child is not possessed by demons. We know it is a neurological disorder and have the resources to obtain necessary therapy, treatment, and education. But others less fortunate do not.

And so I would like to highlight a very special organization, one that I am excited to have found out about, and one that I already feel so passionate about. Knowledge for People is a new non-profit whose focus is to provide  autism education to families and teachers in developing countries. This is their mission statement:

In many parts of the world, there is an extremely limited understanding of autism. Many communities and rural villages in developing countries lack adequate resources and are often unaware the disorder exists, even though it is occurring in children and adults around them. People see the symptoms and effects of autism, but often don’t know what is wrong or how to help.

Our goal is to provide these communities with a greater understanding of autism, its effects, and ways to manage its effects. Through outreach, education, and support, individuals with autism in developing countries around the world will be better understood, accepted, and integrated into their respective communities. Understanding of autism can positively affect families, schools, and the societies as a whole.

Knowledge for People’s first project is to do an outreach educational program in Nepal this summer. They will be working with parents and teachers to provide basic autism education and also to provide behavioral strategies, sensory ideas, etc. They will also be giving presentations, conducting individual case studies, and possibly doing a radio/TV broadcast. They are looking for volunteers who are knowledgeable about autism to go to Nepal with them, specifically speech and behavioral therapists. If you fall into this category and have the last two weeks of July open, please email: info @ knowledgeforpeople.org. They need your help!

Imagine having a child with autism but not knowing what autism is or how to help your child . . . Imagine not having services at school for your child . . . Imagine your child not being accepted into the community because people are unaware of autism . . . These are just a few reasons why Knowledge for People is so important. I hope you’ll join me in supporting them.