Get Out, Explore & Have Fun: Take TV to the Next Level!

Having fun with your child with autism is absolutely essential.  It’s a key to your emotional health, and to the relationship you’re building both with your autistic child and with your typically developing children.  Perhaps just as importantly, when you see your child with autism outside of the classroom or therapist’s office, you may just discover that (1) he or she has some talents you never noticed before and (2) your child with autism is actually a lot of fun to be with

Each Sunday in April we’ll featuring a guest post from Lisa Jo Rudy, the author of Get Out, Explore and Have Fun: How Families of Children with Autism and Asperger Syndrome Can Get the Most out of Community Activities.   She was the the About.com Guide to Autism for five years, and is now an inclusion consultant for community organizations and  museums, a writer for autismafter16.com, and (of course) the mom of Tom Cook, age 15, diagnosed with PDD-NOS.  Find her at www.authenticinclusion.org or at www.lisajorudy.com. 

Take TV to the Next Level!

Our kids are often sponges, who can learn almost anything by heart if it’s introduced through videos, TV or even music.  At first we were horrified by our son’s echolalia: he’d simply memorize entire scripts from his favorite TV shows, and recite them.  Later, though, we came to embrace certain TV shows and videos: they provided him with the tools he needed to engage with other kids, with the real world, and even with academics.

Like many parents, when our kids were small we allowed only “educational television.”  But kids watch an awful lot of shows on ad-heavy cable TV.  We didn’t want either of our kids getting seduced by ads, but even more particularly we didn’t want our son wandering around reciting ads for pop-tarts.  So we started borrowing videos and DVDs of kids’ shows from our library.  We could choose our time to watch together – and avoid the ads completely.

If you have a child who is mesmerized by TV, you may have started to use TV as an opportunity to get away for a little while.  Instead, try this:

• Choose a TV show that your child really likes, and purchase a few toys (action figures, die-cast figures, etc.) that relate to the show.  Don’t worry too much if your child is “too old” for the show: grown ups still love the Muppets, and even grandparents love Disney

• Choose a time to watch together, and talk about the show as you watch.  Ask your child questions; if he doesn’t reply instantly, try saying outrageous things that he knows are wrong (eg, Big Bird is purple with green stripes, isn’t he?).  Your child’s connection with and love of the show and characters may well prompt him to interact with you in new ways

• Once the show is over, try using your new toys as puppets, acting out bits from the show.  Or use them in interactive play (Thomas the Tank Engine is ideal for this, since model train layouts are fabulous tools for sharing, creative thinking, role play, etc.)

You may find that your child is more verbally responsive to Thomas the Tank Engine or Elmo than he is to other human beings – or more fascinated by the tracks than by the people playing with them.  If that’s the case, you can build on that in the real world!  Your child might love attending puppet shows or going to TV-show oriented events (a Wiggles concert could be an ideal introduction to concerts and plays, even if your child is “too old” for the Wiggles).

Online Chat Transcript with Dr. Jill Locke

We were very excited to have Dr. Jill Locke here with us. Jill Locke is a post-doctoral research fellow at the Center for Mental Health Policy and Services Research and the Center for Autism Research. She completed her doctorate degree in Educational Psychology at the University of California, Los Angeles.

Jill received the 2011-2012 Autism Science Foundation Postdoctoral Fellowship award to modify a proven-efficacious intervention designed to address socialization in children with ASD, so that it can be used by school personnel to facilitate engagement and play between children with ASD and their peers during unstructured recess periods.

Click here to read the transcript

Prevent Bullying and Shape the Future

This is a guest post from ASF Science Writer Jerri Sparks Kaiser. Jerri, a parent of four children, one of whom has autism, blogs for ASF from a parent’s perspective about the latest autism research. A former Congressional Press Secretary, Jerri is an experienced science writer and has written specifically about autism for many years. Before her life in PR, she was a trained researcher having earned her B.A. in Psychology at UCLA. She currently lives with her family in New York.

Photo Credit: Eddie~S

Bullying is something that has been around as long as adolescents have been in close proximity to each other.  Whether your children are in large schools or small schools, bullying exists.  With the recent report that ASD children are three times more likely to be bullied than their unaffected siblings, the impact of bullying has taken on a special urgency in my home.

ASF and UJA-Federation of New York to Launch Survey of Services Needs of Young Adults with Autism

Today we are pleased to announce an exciting new partnership with UJA-Federation of New York, an organization dedicated to strengthening the Jewish people and inspiring a passion for Jewish life and learning. We will be working together to launch a survey of the services needs of young adults with autism in the New York metropolitan area. The announcement was made by Travis Epes, chair of UJA-Federation’s Autism Committee, at today’s fifth annual UJA-Federation of New York Hilibrand Autism Symposium.

ASF and UJA-Federation will work with the Interactive Autism Network (IAN) at the Kennedy Krieger Institute at Johns Hopkins University to design and implement the survey.

The survey will gather data from three groups; independent adults 18-35 with autism, parents of independent adults with autism, and parents of adults with autism under guardianship. The goal is to learn more about what leads individuals with autism to have a meaningfully engaged day.  The survey will include questions about employment, leisure, and participation in spiritual activities.

“We want to learn specific information about the drivers of success, so that UJA-Federation and other philanthropic organizations can provide financial support to those types of activities, thus ensuring that the programs that lead to success become more widely available” said Epes.

The surveys are expected to be released in September.  To participate or to receive updates about this project, email contactus@autismsciencefoundation.org, indicating which of the three survey groups best describes your family situation.

Additional support for this project has been provided by the FAR Fund (www.farfund.org).

More About UJA-Federation of New York
For more than 90 years, UJA-Federation has been a central force for communal planning and philanthropy in the New York Jewish community. Through UJA-Federation, more than 60,000 donors pool their resources to help people in need, inspire a passion for Jewish life and learning, and strengthen Jewish communities around the world — to address the issues that matter to us most as Jews and as New Yorkers, such as helping those affected by autism. Working with more than 100 network beneficiary agencies, synagogues, and other Jewish organizations, our reach spans from New York to Israel to more than 60 other countries around the world, touching 4.5 million people each year. Because we do the most good when we do it together. For more information, please visit our website at www.ujafedny.org.

Get Out, Explore & Have Fun: Meet a Critter

Having fun with your child with autism is absolutely essential.  It’s a key to your emotional health, and to the relationship you’re building both with your autistic child and with your typically developing children.  Perhaps just as importantly, when you see your child with autism outside of the classroom or therapist’s office, you may just discover that (1) he or she has some talents you never noticed before and (2) your child with autism is actually a lot of fun to be with

Each Sunday in April we’ll featuring a guest post from Lisa Jo Rudy, the author of Get Out, Explore and Have Fun: How Families of Children with Autism and Asperger Syndrome Can Get the Most out of Community Activities.   She was the the About.com Guide to Autism for five years, and is now an inclusion consultant for community organizations and  museums, a writer for autismafter16.com, and (of course) the mom of Tom Cook, age 15, diagnosed with PDD-NOS.  Find her at www.authenticinclusion.org or at www.lisajorudy.com.

Meet a Critter

My son’s first word was “cat.”  His best buddy to this day is his cat Dot, and his favorite recreational activity is bird watching.  Tom is not at all unusual among people with autism: many, in fact, are more comfortable with animals than with people.

Perhaps the best known example of an autistic adult with a strong connection to animals is Temple Grandin, who is a leader in the humane management of cattle.  But your child need not be a Ph.D. scientist to enjoy connecting with animals of all kinds.

If your child with autism is an animal fan, what’s the best way to help him pursue his interest in the community? A few possibilities include:

• Horseback riding.  Hippotherapy or plain old riding lessons can open all kinds of doors for children with autism.  Riding builds physical strength and balance, communication skills, and even social skills when riding is done in a group setting or as part of an equestrian team.  Some people with autism become so engaged with their horse and stable that they volunteer and work for their local stable owner.
• Bird Watching.  Alone or in a group, birdwatchers exercise their powers of observation, enjoy the natural world, and become part of a worldwide interest group.  In the long run, bird watching can even lead toward a career as a naturalist, nature educator, conservationist or scientist.
• Animal Rescue Work.  The ASPCA and other animal rescue organizations are always looking for volunteer help. Children with autism can spend time with rescue animals, helping to socialize them or otherwise providing support to the rescue organization.
• Visiting Zoos, Aquariums and Nature Centers.  While it can sometimes be tough to take a child with autism to a zoo or aquarium due to crowds and smells, nature centers are wide open and much less congested.  Some kids, though (like my son) are so motivated by their interest in the animals that they’re able and willing to overlook crowds, heat and smells to spend time with their favorite critter.
• Animal Shows.  Whether you’re watching elegant Lippizaner horses from Vienna or local livestock, it can be fascinating to spend time at an animal or pet show. Kids with autism may not be able to spend a great deal of time at a show, due to sensory or behavior issues, so starting with low-cost options is probably the best choice.
• Pet Stores.  Every mall has a pet store, and every pet store has at least a few adorable critters to observe.  Sometimes, pet store owners will even allow visitors to take a puppy into a small room where it’s possible to interact without risk to dog or child.

Whatever your child’s level of verbal ability or behavior, don’t pass by the possibilities provided by animals.  Non-verbal children are as capable as anyone of establishing a positive relationship with an animal . Your child may well surprise you with her compassion, connection and willingness to build a relationship with a non-human friend.

 

Online Chat Transcript with Stephen Shore

We were very excited to have Stephen Shore. Stephen is a professor at Adelphi University and was diagnosed with autism as a child, which gives him a somewhat unique perspective on ASDs.

In addition to working with children and advocating for a better quality of life on the autism spectrum, Stephen presents and consults internationally on adult issues pertinent to education, relationships, employment, advocacy, and disclosure.

Click here to read the transcript

Unraveling the Mystery of Touch in the Autistic Brain

This is a guest post from ASF Science Writer Jerri Sparks Kaiser. Jerri, a parent of four children, one of whom has autism, blogs for ASF from a parent’s perspective about the latest autism research. A former Congressional Press Secretary, Jerri is an experienced science writer and has written specifically about autism for many years. Before her life in PR, she was a trained researcher having earned her B.A. in Psychology at UCLA. She currently lives with her family in New York.

Me: Jared, do you like to be hugged?

Jared: I don’t know.  Kind of.

Me: How does the hug make you feel?

Jared: Pretty happy, bye.

Then he hung up on me.  Such is the life of the mother of an autistic child.  It is so hard to get a conversation out of him, much less a phone conversation with its inherent lack of visual cues and persistently following him around the room.  Jared is also a teenager who wants to do his own thing.

The reason I asked Jared these questions is because a new study out of the Yale Child Study Center by Martha Kaiser (no relation) indicates that individuals with autistic traits may not process hugs as socially rewarding.  Specifically, two areas of the brain, the STS (superior temporal sulcus) and the OFC (orbitofrontal cortex), were found not to be stimulated during slow, light brushes with a watercolor brush.

In my own experience with my son Jared, I remember the day he was born when the nurse placed him in my arms.  I tried to initiate breastfeeding but Jared turned away.  I noticed then that whenever I stroked his cheek like the books said to stimulate the nursing instinct in your baby that my son turned the opposite direction.  I thought I was doing it wrong and I visited with several lactation consultants.  Nothing worked and finally my milk dried up at 12 weeks because Jared just didn’t get the sucking down properly.  I even pumped and used a crooked syringe designed to teach babies how to breastfeed, but nothing worked.  I was so immensely disappointed in myself and felt like a failure as a mother.  The unkind comments of disapproving moms at the mall when I pulled out Jared’s formula bottle added to that pain.  It is amazing how cruel people can be when they don’t know the situation.  To this day I feel like crying when I remember one woman saying “you do know that breast is best” as she shook her head at me.

What I came to realize years later is that not only did Jared have difficulty in the muscle movements needed to suck efficiently, he also did not crave that physical touch that my later born children did.  My three younger children would gently caress my arm, neck or chest area as they nursed and they would squeeze me with their other hand.  It was so enjoyable.  They also curled their body around mine as if we were still attached.  The only time Jared did that as a young infant and child was when he was terrified of something.

In fact, to this day Jared only seems to crave physical contact when he is in distress, such as when he has had a “bad moment” at school or the group home where he now lives or when he has been hospitalized for behavioral problems.  It is bittersweet that I can only get that bonding from him when he is in distress but I tell myself at least he needs me.

Recently Jared called me late at night from his group home, crying hysterically.  He had an altercation with another client at the group home, which is about an hour away from our home, and he wanted me to make him feel better.  I spoke to him in soothing tones over the phone, my heart breaking because I was not beside him to comfort him, and he slowly calmed down.  We did a visualization technique I learned from the book “When My Autism Gets Too Big.”  I guided him through deep breaths and encouraged him to close his eyes and rub his upper legs slowly as we both visualized the creek in Vail, Colorado or the beach at Martha’s Vineyard, two of our favorite vacation stays.

Then Jared asked sadly “Who is going to hug me?”  It was a remarkable thing for him to ask.  My heart was so broken by this point, but I said into the phone “I am, right now.  Wrap your arms around yourself and know that it is me.  I am coming through this phone to hug you right now.”

“Can you read me a story?” he then asked.  “Yes,” I said.  Then I recited “Good Night Moon” from memory and my son fell asleep.  Sometimes a virtual hug is all I can give my son, late at night and so far away.  Our journey with autism is not at all an easy one.  I take comfort in the fact that Jared does now ask for the occasional hug and every now and then tells me he loves me, maybe not always with words but actions.

The research may indicate there is no social reward but personally I feel the results of the study indicate a different way of expressing and processing the social reward.  Scientists just haven’t decoded the autistic brain’s response to social stimuli yet.  Different does not mean absent.

Get Out, Explore & Have Fun: Take a Hike

Having fun with your child with autism is absolutely essential.  It’s a key to your emotional health, and to the relationship you’re building both with your autistic child and with your typically developing children.  Perhaps just as importantly, when you see your child with autism outside of the classroom or therapist’s office, you may just discover that (1) he or she has some talents you never noticed before and (2) your child with autism is actually a lot of fun to be with

Each Sunday in April we’ll featuring a guest post from Lisa Jo Rudy, the author of Get Out, Explore and Have Fun: How Families of Children with Autism and Asperger Syndrome Can Get the Most out of Community Activities.   She was the the About.com Guide to Autism for five years, and is now an inclusion consultant for community organizations and  museums, a writer for autismafter16.com, and (of course) the mom of Tom Cook, age 15, diagnosed with PDD-NOS.  Find her at www.authenticinclusion.org or at www.lisajorudy.com.

Take a Hike!

With so much on your plate, it can be hard to find the time or inclination to take your child with autism on a simple walk in the woods, a visit to a pond, or a trip to the beach.  Yet people with autism are often very much attracted to a connected with the natural world.  And, because there are few social or physical demands made by chirping birds, rippling brooks or cool green forests, you may find that your child calms down, relaxes, and enjoys himself.  You may just find that you do the same.

Start by choosing a nearby destination that is likely to be uncrowded and undemanding.  Before you go, take a trip on your own with a camera or video camera in hand, and create a preview of your plan.  Ideally, choose a location with a water attraction: a pond, lake, brook, river or beach.

Choose a day that’s not physically challenging (terribly hot, cold, or wet), and tell your child about your plan.  Show her your preview images or video, and discuss how long you’ll be out (no more than a couple of hours), what you’ll see and do, what snacks you’ll bring along, what you might see along the way, and so forth.

Then, get out and start enjoying.

Pay close attention to your child’s demeanor, her likes and dislikes, and her preferences.  Does she enjoy walking briskly for long distances, or get tired easily?  Is he bothered by bugs, or oblivious to them?  Is the woods a good choice, or would your child be happier in a meadow, a city park, or another type of natural setting?

What does your child notice?  Our son happens to be very interested in birds, and can spend a good deal of time watching birds on ponds, in marshes, and near harbors.  To make the experience more interesting and fun for all of us (his parents, sister, and family friends), we now go for nature walks and bring along binoculars and a field guide to birds of New England.

If there is water in your area, spend some time there.  Try skipping stones, or experimenting together by tossing in different types of objects (stones, pine cones, acorns, wood chips).  Is your child following your lead?  Can you follow his?