Teen Autism

This morning, like every other weekday morning, Nigel got on his bike to go to school, Aidan walked to the bus stop to be picked up to go to his school, and I got in my car to go to work. A few miles down the road, I pulled up to the intersection and into the left turn pocket that leads out to the freeway. I could barely see the signal because the sun was directly behind it, blinding me. I tilted my head so that most of my vision was shaded by the car’s visor, and the little red arrow was faintly visible in the thin space between the visor and my rear view mirror. A moment later I could barely make out the little arrow changing from red to green, and I blindly drove forward. I felt like I was driving into the sun.

And it struck me, as I got on the freeway, that for the past twelve years since my son’s diagnosis, that’s exactly how it’s been. That’s how it is for all of us. We are driving into the sun. There are no rules about raising a child with autism! No tried and true methods. What works for one child doesn’t work for another. Because I pursued intensive (but non-aversive) ABA treatments for my son so that we could increase his chances of learning to talk, and then medication to help regulate his behavior, does not mean that I do not accept him as he is. Because someone else does not pursue various therapies does not mean that they do not want to help their child. Because I say that my son “is autistic” does not by any means indicate that I don’t think that there is “so much more to him” than that. Because other parents prefer to say that their children “have autism” does not by any means indicate that they’re in denial. Both ways are valid - and appropriate. There are no rules with autism. We are all living with it the best way we can.

At work a while later, I received an e-mail with a link to this New York Times article. Here’s the crux of it: “Though it [Asperger's] became an official part of the medical lexicon only in 1994, the experts who are revising psychiatry’s diagnostic manual have proposed to eliminate it from the new edition, due out in 2012.” How does that grab you? I knew that the DSM was up for revision, but I never thought that this was the way it would go. And you know what that tells me? It tells me that we parents aren’t the only ones driving into the sun. If the “experts” don’t know how to effectively define all of autism’s manifestations, where does that leave us?

It leaves us right where we’ve always been, doing what we’re doing, forging ahead even when we’re not sure if we can. Damning the torpedoes and hoping for the best. Trying everything - or not. Because the bottom line is that we have to do what feels right to us, not what neighbors or relatives think we should do. Certainly not what “experts” tell us to do. Instead, we network, we support each other and our different choices. We respect one another as parents of autistic children, and as parents of children with autism. Because whether some of us go to the left and some of us go to the right, we’re all just figuring it out as we go, trying to live our best lives. And if we all arrive at the same destination, does it matter how we get there?

It’s like with the boys and me this morning, every morning. We all go our separate ways, but at the end of the day, we are home, happy, together. We may do a little driving into the sun while we’re out there, but the day still passes, and we have the harbor of one another to see us through.

Remember when the autism ribbon magnets came out? I do. I don’t recall how many years ago that was, but I got some right away, gave a few to relatives, kept a couple. We didn’t really think about the puzzle message back then, the “I am not a puzzle” outlook. And I totally get that; I do. But to me, it’s not the person that’s puzzling. I’m sure most parents feel that way. And definitely some kids.

Anyway, even though I always thought that the design was too busy and actually detracted from the message, I still sported one on the back of my car for several years, along with an “I love a person with autism” bumper sticker. As time went on, the bumper sticker peeled and faded considerably, but the magnet held strong. Years of carwashes, storms, uncovered parking, and road trips (we take a lot of those) did not affect it. That thing was baked on.

And then, two months ago, I went through the carwash, the same carwash I’ve been going through for years, and the magnet came off. I went to a store after the carwash, and when I came back to the car in the parking lot, I noticed that the magnet was gone. Just a little black piece of it was left behind, still baked on.  I stood there for a moment, dejected. I always like to look for those whenever I’m driving and get a feeling of pride and a little excitement when I see one. And now mine is gone. Sure, I can easily get another one, but it won’t be my magnet, the one that has gone with us everywhere for the past seven years or something like that. I didn’t want to replace it with another one.

So I decided it was time for something new. Finally motivated, I got going on something that I’ve been thinking about doing for a while. I did some looking, tried out a few designs, and TA-DAH! I proudly present to you the all-new, puzzle-free Teen Autism bumper sticker!

And because I thought there might be other parents out there looking for an awareness alternative for the family car, I made enough to share. Really! If you’d like a sticker to let others know that you’ve got an older child with ASD, just send an e-mail to Tanya@teenautism.com with your name and address. Or if you know of any teachers, therapists, or sped coordinators in your area who would be interested, let me know and I’ll be happy to send one out for them.

Seeing my car without the iconic ribbon magnet took some getting used to. But I must admit that I like my cool new sticker even better!

I don’t really remember having a hero when I was growing up. Some kids idolize actors, musicians, and athletes. Some kids cite firefighters or other rescue personnel as heroes. Sometimes teachers, even parents. Religious and political figures. And then there are those who have fictional characters as their heroes - movie, book, or cartoon characters and superheroes (I admit, I did have a bizarre crush on Aquaman for a while).

As adults, we often develop different heroes (fortunately, for some of us). Our friends and spouses, for example. Our siblings. For many, parents still head the list. Those of us who are special needs parents often list the teachers and therapists who work with our children as our heroes, not to mention our children themselves, with all that they go through. And then we - parents - have each other. We inspire, listen, support, encourage, and make suggestions. We reach out, share, learn, and hope. We identify with each other.  We are each others’ heroes.

And now I have a new hero to add to the list - the ever-growing list of fellow autism parents I have become fortunate enough to know, either online or in person, or both. I want everyone else to know about him too, because I think he’s phenomenal. I’ll call him Bert. Bert attends the support group that I facilitate. He’s 84 years old and has a son with Asperger’s. Eighty-four! His son is 58, and Bert drives him to work and cares for him. (He recently applied with a local organization that handles adult DD services to get some support systems in place.) Bert reads anything about autism that he can get his hands on, takes notes, and comes to the meetings to tell all of us about what he read. He tells jokes, encourages us to lean on each other (like AA people, he says), and patiently listens to those of us with much younger kids. He reminds us that even though our kids are all different and at different ages, we share many similar experiences. He wears a cute straw hat and plaid shirts and I just want to give him a big hug. All of us inspire each other, but that man, that gentle, devoted, amazing man, is my new hero (sorry, Aquaman).

Bert, I want to be like you when I grow up.

As an autism parent nearly twelve years post diagnosis, I (and, I’m sure, many other parents) have developed what is often referred to as “A-dar,” short for autism radar. It’s the awareness of a possible autism diagnosis through observing the behavior and facial cues of children and adults with whom we happen to come in contact. It’s not something I ever make an effort to do - it just happens. I’ll be in a public place, or a gathering of some sort, and I happen to notice something different, but all too familiar. My spine sort of tingles, and I know. Or I think I know.

A week before going to Nepal, I spent a couple of days visiting with my extended family that lives in Los Angeles County, where I grew up. My brother and sister-in-law hosted a barbeque on the Fourth of July, and, in addition to everyone’s company, I enjoyed lounging around their pool and watching the fireworks from it. We could see about a dozen different fireworks shows in the surrounding communities, all going off intermittently. It was really cool to watch, and I was happy to be there.

The next day, my brother and I got together with our youngest sister and drove out to Hacienda Heights, a city in LA County where we had spent most of our childhood. We drove by three of the homes we’d lived in, stopping to take photos of two of them. They’d both been redecorated, of course, and we were relieved that they were not in disrepair. One had had a tree in the front yard that my brother and I used to climb regularly, and it had been taken out, we noted with disappointment.  One had been a brand new home when we moved into it in 1976, and so the baby trees that our parents had planted had grown up all these years later, towering over the house.  The fact that we had now grown up, too, was not lost on us.

Then we went to the local ice cream store where I had worked during high school. It was still there! It felt weird to be buying cones from the other side of the counter, noting all the changes in the place since I’d been gone for twenty years. The chain grocery store that had anchored the shopping center was empty, out of business. But the ice cream store was still there, a little oasis on a hot day. Then we drove out to the mall where we used to buy all our school clothes while growing up, and we stopped for lunch at a Mexican restaurant that we’d loved as kids. This time, though, we had margaritas.

After lunch, we drove out to the cemetery where one of our grandfathers is buried. We couldn’t remember where it was, but we had a hunch and were able to find it. The three of us sat under a tree on a bench next to his grave and talked about our memories of him. My brother noticed a cigarette butt on the grave marker and got up to flick it away. Then we laughed as we realized that Grandpa probably liked having it there, since he was a smoker who always tried to hide it from everyone.  

When it was time to drive back to my brother’s house, he stopped for gas and got out to pump it. Sitting in the passenger seat, I began to hear some type of vocal stimming coming from the SUV filling up next to us. “Kava, kava, kava, kava,” it sounded like. A few seconds went by, then “Kava, kava, kava,” again. It was a masculine voice, maybe an older teen. I wanted to see him, wanted to see if my interpretation of what I was hearing was correct. But the windows of the SUV were dark, and I could not see in. After another minute, the SUV pulled away, and I silently wished them well.  

Seconds later, I heard it again. “Kava, kava, kava.” Obviously, it had not been from an occupant of the SUV. I turned around and looked. “Kava, kava, kava.” It was a young man selling flowers. What? I thought. What is he saying? I strained to decipher it and decided that he must be saying “Flowah, flowah, flowah.” But he was saying it so quickly and run-together, with a non-native-English-speaker accent, that I thought I had been hearing vocal stimming. I had been convinced that that’s what it was. I laughed inwardly at myself, my certainty, and my mistake. Sometimes things are not always as they appear to be. Houses are repainted, trees grow bigger or get removed, and sometimes a guy is just selling flowers.

My brother and I in front of one of our childhood homes

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 5^th 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

“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.

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.

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.

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.

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!