Archive

Posts Tagged ‘sensory issues’

New Findings on Sensory Overload: A First-Person Perspective

February 2, 2012 15 comments

Guest blog post from Autism Speaks Science Board Member John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s and Be Different: Adventures of a Free-Range Aspergian

According to a press release I received this morning, new research from Cold Spring Harbor Lab might help explain how a gene mutation found in some autistic individuals leads to difficulties in processing auditory cues and paying spatial attention to sound. [Editor’s note: See our related science news story on this Autism Speaks-funded study.]

The study found that when a gene called PTEN is deleted from auditory cortical neurons—the main workhorses of the brain’s sound-processing center—the signals that these neurons receive from local as well as long-distance sources are strengthened beyond normal levels.  That’s the first interesting part of the study.

PTEN has been associated with autism in a number of previous studies. In particular, the PTEN variation has been found in autistic people with larger heads, and it’s suspected as a cause of both additional connectivity in the brain and additional brain cell growth.

How many of today’s autism population have a PTEN variation?  Do you?  No one knows.  It’s one of many genes researchers are studying.

What I do know is that I have abnormal sensitivity to sound, as do many autistic people. Many of us are easily overwhelmed by noises that go unremarked by the rest of the population. For some time, I have realized my excess sensitivity is a two-edged sword. On the one hand, it gave me powerful insight into music and facilitated my earlier career in rock and roll. On the other hand, it has often put me at a disadvantage as I’m rendered inoperative by what others see as ordinary situations.

It’s interesting to read that PTEN may be a cause of that difference. Understanding the genetic foundation of why that happens doesn’t do me much good, but the next part of the study might:

Researchers found that those can be blocked by rapamycin, a drug currently in use as an immunosuppressant. Rapamycin as an autism therapy has been studied before and found beneficial in some cases. This study is one of the first that sheds light on “why” and speaks to a specific mechanism by which we may be disabled.

Now that I’ve come to know many people on the spectrum, I realize I am one of a fortunate few who have significant sensory sensitivity without being disabled by it.  The vast majority of autistic people who write about sensitivity do so in the context of disability. If there were a way to reduce sensory overload, I’m sure a number of folks on the spectrum today would like to hear about it.

One next step might be to see if rapamycin has the same effect in humans, and what other unforeseen effects it may have. Rapamycin has already been tried as a therapy in other contexts relating to autism. A targeted study that looked at the drug’s effect specifically on sensory overload would be very interesting.

It’s possible that this research illustrates a first step on the path to remediating a specific component of disability for many people on the spectrum. Much more testing will be needed to really know if that’s true, but it looks like a promising start.

My biggest concern is that rapamycin may have unforeseen effects elsewhere in the brain, and we won’t be able to understand that until we have conducted a sizeable human trial. We can only do so much by observing and extrapolating from mice.

An interesting aside is that Dr. Zador’s research further supports the emerging idea that excessive brain plasticity is a key component of the brain differences that lead to autism. His research premise is that the PTEN variation causes excess connectivity, and connectivity is a key element of plasticity. I’ve written about that idea in earlier posts.

I read a lot of talk in the autism community that questions why we spend money on genetic research when today’s autistic population needs help now. There is a popular perception that genetic research can only benefit unborn generations, or even worse, be used as a tool for selective abortion.

Dr. Zador’s study shows a clear pathway from a basic genetic study to a possible therapy for autistic people today, if they suffer sensory overload issues. It’s a perfect example of why this kind of work continues to be important and needs to be funded alongside all our other efforts in the autism research arena.

One of the pathways regulated by the PTEN protein involves shutting down an intracellular enzyme called mTORC1, which promotes cell growth, among other things…. While Zador is excited about “this finding that suggests that mTORC1 could be a good therapeutic target for some cases of PTEN-mediated brain disorders,” he is also keen to further pursue his team’s new evidence that cortical hyperconnectivity could be the “final pathway” by which diverse ASD genetic pathways lead to a single ASD phenotype. “Using cortical connectivity as a paradigm for assessing ASD candidate genes could provide insights into the mechanisms of the disorders and perhaps even give us clues to formulate new therapeutic strategies,” he states.

Dr. Zador’s leap from a subtle variation in genetic code to a specific behavioral aberration represents a brilliant leap of intuition and reason, backed up with careful lab work. It’s the kind of result I hope to see when I cast my vote for further genetic studies. This work was originally funded by Autism Speaks and NIH four years ago.

Here’s another really fascinating point to ponder. The PTEN genetic variation has been already associated with certain people with severe autistic disability and people with tubular sclerosis. Now, by associating PTEN with auditory sensitivity, we confront the question:  Do people like me have the PTEN difference too?  No one knows, because that study has never been done.

I’ll just say one more thing in closing. The discovery that PTEN aberrations can lead to sensory overload, and the pathway by which that happens stands separate from any question about rapamycin as a therapy. Don’t let worries about a particular drug blind you to the significance of the first finding.

Other researchers are looking at alternate ways to affect cortical plasticity in general and even connectivity as described in this study.  Rapamycin may end up being a therapeutic answer for some, but it’s equally possible that a better therapy will be developed now that we are beginning to unravel the underlying issues. One day, autistic people who are disabled by auditory overload may be able to “mute” the disability, while retaining enough sensitivity to be exceptional.

That, folks, is what the science is all about.

In Their Own Words – Ten Things That I Wish You Would Accept, No Questions Asked

July 30, 2010 47 comments

This “In Their Own Words” essay is written by Lydia Wayman. Lydia is a 22 year old who “resides somewhere on the autism spectrum.”  Her three favorite things are her service cat, Elsie, her best friend and her mom. She recently wrote and published a book, “Interview with Autism,” for parents and caregivers about life on the autism spectrum.

I started blogging almost exactly a year ago as a way to process my circumstances better, as I always process better in writing, and hopefully as a way to demystify autism to parents and caregivers of those on the spectrum. I realized long ago that some people seem to have a knack for handling my quirks, while others … don’t.  This list, “Ten Things That I Wish You Would Accept, No Questions Asked,” arose from considering the things that the most positive people in my life have always done, while also thinking about what some not-so-positive people consistently do that causes a problem. I can’t speak to the truth of these statements for everyone on the spectrum, but I am guessing that there are many commonalities amongst us when it comes to these matters.

1. I can be surprisingly good at one thing (say, remembering conversations precisely as they happened many years after the fact) and surprisingly bad at another thing that you might think should be so much easier (like keeping track of receipts or remembering the procedure for filling a prescription).

2. Just because I have the words to type it does not mean that I have the words to say it.

3. I really do hate to melt down, especially in public. If there were another way out, I would always take it.

4. I never play stupid. If I ask a question or say I don’t get it, it means I don’t get it. Please don’t make me feel dumber by saying that I’m faking it, just because it seems straightforward.

5. What may be slightly bothersome to you, like the waistband on a pair of pants, can cause me to be a witch all day … or at least until I change clothes. If I’m crabby, it’s because something is physically uncomfortable in the sensory realm of things. Until that thing changes, I will continue to be crabby.

6. I can’t control my excitement over cats. So if you mention cats or point out a cat, realize that I’m going to get excited. Let me enjoy it. A little happiness never hurt anyone, eh?

7. I am often completely unaware of self-injurious behaviors. I scratch, hit, bite, and pick often, and much more frequently when I’m agitated for some reason. In the moment, I don’t know that I’m doing it; if made aware, it’s so compulsive that I almost physically can’t stop myself. But using my head, obviously I don’t like the results of it.

8. I am exactly the same person inside regardless of how engaged (or disengaged) I am with the environment and others in it. Yes, you might have to change some things based on how I’m reacting in that moment, but please continue to treat me like the same person that I am.

9. Engagement and happiness do not depend on one another! I can be just as happy off in my own world as I am fully engaged with you. However, a lot depends on you, here. If I’m disengaged and you’re forcing me to “act normal,” then no, I don’t feel very happy. If you’re interacting with me in a way that I can in that moment, then I can be as happy as I’ve ever been.

10. While autism does mean that I am absorbed within myself (aut means self, after all), that doesn’t mean that I don’t want you around. If you can come to me, rather than forcing me out of my world to come to you, then I’d love to let you in. There’s a whole world in here; maybe you should check it out.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Share

Ten Tips for Vacationing with Your Child – Part 3

July 30, 2010 2 comments

This guest post is by Elaine Hall, author of the memoir NOW I SEE THE MOON: A Mother, a Son, a Miracle and founder of The Miracle Project, a theatre and film arts program for children with special needs. She is also the mother of a fifteen-year-old son with autism. Discuss the book on Facebook and follow Elaine on Twitter @CoachE.

This is the final post in a three-post series about vacationing with your child who has autism; read the first post here and the second one here.

Tip # 7 Staycations: Same place, different experiences. Customize!

When I was a child we went on a family vacation every year, usually to the beach. One year, our finances were particularly low and we couldn’t get away – so my dad made a fun time of “Vacation at home!” My dad and mom set it up so that each child and parent got “their day,” and the other family members went along.  My dad’s choice was fishing at a nearby lake, my mom, “vegging” out at a local pool, my brother chose an amusement park, my sister a movie, and I chose going to an art museum. This special week stands out in my memory as one of the best vacations in my life.

Let your child be part of this planning process. Use a dry erase pad and write down possible ideas. Let your child circle or point to where they would like to go. For kids who are nonverbal – there is a new app for the iPad called Proloquo 2Go, which “provides a full-featured communication solution for people who have difficulty speaking.” Find what communication system(s) work best for your child so that your child with ASD can have a voice in choosing where they wish to go. Let each child feel special. If possible, you can bring along a teen volunteer to help out. For moms – maybe your special day can be going ALONE to a spa day, while the rest of the crew has a picnic. Refuel. It matters.

AMC theaters now offer Sensory Friendly films where our kids can walk up and down aisles, make noise, and just be themselves.

Tip #8 Get a special pass when you go to an amusement park (or other busy venues like concerts, plays, etc.).

Some children with ASD love amusement parks; some find them too stimulating or overwhelming. Again, preparation is the key to success. Before taking Neal to Disneyland, we showed him photos, went online and let him do a virtual tour. Once we arrived there, we had a pretty good idea of what he wanted to do. Remember too that your child’s interests may seem odd but they are his or her interests. (Neal could go on Space Mountain 10 times!)

Most of the major amusement parks have a special disability pass where your child and family members do not have to stand in long lines. Don’t be proud!  Get this pass! In fact, Neal is one of the most popular kids on our block, when it comes to going to Magic Mountain, his now favorite amusement park, since everyone in his party doesn’t have to stand in line!

Tip # 9 Enjoy the great outdoors.

Neal loves to be outside. I have seen him the happiest when he can be out all day long. Go camping, to the beach, hiking, have picnics, do things where your child can feel boundless with few opportunities to have to say “No,” or manage inappropriate behaviors. Today there are many outdoor programs that families with special needs can enjoy:

Leaps and Boundz
FACT Family
Surfers Healing
Autism on the Seas (look for the new Miracle Project on the Seas, next summer!)
Camp Surf in San Diego
Extreme Sports Camp

Tip #10 Be Here Now (wherever “Here” is that day)!

Give yourself the present of being Present. Enjoy this precious moment. I once attended a family surf camp where the dad had spent hours preparing his son for surfing: practicing standing on a surfboard, paddling in a pool, etc. However, once at the beach, his son was so excited about being in the ocean, that he just wanted to play and dance in the waves, he didn’t want or need to surf as planned. The dad moped on the beach, feeling this situation as one more failure. I suggested that he stop for a second and look at his child who was in complete joy. The father soon realized that it was his own need for his son to complete the task at hand, rather than enjoying the moments with his son.  He realized as we all do from time to time, that the gift of the present is sharing time, experiences, and engagement with each member of our family … in their own special way, and in their own special time.

As I look back, even that first seemingly “failed” beach trip where my mom and Neal spent time on the patio together, was actually a beautiful bonding time between grandchild and grandmother.

Enjoy the moments. Yesterday is gone, tomorrow is a mystery. Today is a gift that is why it is called the Present.

Vacation is in part, a state of mind.

Enjoy your summer. And please let me know how your vacation goes!!!


Share

Ten Tips for Vacationing with Your Child – Part 2

July 28, 2010 6 comments

This guest post is by Elaine Hall, author of the memoir NOW I SEE THE MOON: A Mother, a Son, a Miracle and founder of The Miracle Project, a theatre and film arts program for children with special needs. She is also the mother of a fifteen-year-old son with autism. Discuss the book on Facebook and follow Elaine on Twitter @CoachE.

This is the second post in a three-post series about vacationing with your child who has autism; read the first post here.

Tip # 4 Expect the Unexpected. Go with the Flow (as if we had a choice!)

As well-prepared as Neal was for his flight, once he got to the airport, he was so excited he couldn’t contain himself. At the airport, as we waited to board, Neal stared at the huge planes out the windows. He had great anticipation. I turned my head for a moment. I then heard the sound of an alarm. Neal had raced to the exit door and tried to open it so that he could go outside and be with the airplanes. He panics. People glared at him. Security raced over. “It’s okay sweetheart,” I told Neal, trying to comfort him.  To the security guard and the concerned onlookers, what could I say? “He has autism! He just likes airplanes!”

I remember early on in our diagnosis becoming outraged at others for making what I thought were “stupid comments” about my child and his behavior. Too, I resented their judgment of how I handled unexpected situations based on Neal’s reactions to circumstances. Now I understand that such reactions come from ignorance (just plain lack of knowledge).  I now try to use every occasion as an opportunity to educate and sensitize others to the special needs of my very special child and others like him.

TACA (Talk About Curing Autism Now) has cards that you can present to strangers to help them understand autism.

Tip #5 Call the airline (cruise line or hotel) in advance and let them know you are traveling with a child who has special needs.

Our choice to go with the flow continued throughout the flight. Once we boarded the plane, Neal remembered all that we had practiced (backpack under his chair, seatbelt snapped closed, and ears covered at take-off). Success! Until beverage service does its thing in the aisle, blocking the path to the bathroom in coach (where we are seated) and Neal indicates that he needs to go NOW. This we hadn’t practiced.

At my husband’s suggestion, Neal and I make our way forward to the first class restroom where the flight attendant recites the usual “first class passengers only” spiel. As I try to explain the situation of my son’s special needs, a man from first class, clearly able to overhear our conversation, heads into the bathroom, pushing ahead of Neal. “He’s going to have to wait like everyone else,” she prattles on. As I start arguing with her,  Neal sees an opening. He darts towards the bathroom door. And yet another man jumps in front of the door with the cocky condescension of a first-class citizen. Neal tantrums. “Return to your seats,” demands the flight attendant. Neal grabs her eyeglasses off her face. She panics and calls for security. All this happens within twenty seconds. I’m losing it. My husband steps in. He calms me and quiets Neal enough to get him to wait behind the cart as it passes each seat. He then takes Neal to the bathroom. I return to my seat, fuming. If that stupid flight attendant hadn’t been so stuck on her rules, if that guy in first class hadn’t been so arrogant, none of this would have happened. How can people be so cruel?

Now I know to phone the airline in advance and tell them about my child’s special needs and apprise the flight attendants, that if something unusual presents, they need not be afraid. My child has the best intentions and he has autism. Things happen. I believe that people really do want to help families like ours if we tell them how by sensitizing them to our circumstance.

Airlines are becoming more accommodating. When I do the work beforehand, they offer comforts including letting us board early, being kind, patient, and attentive to Neal. I have found that, generally, fear of the unknown creates discomfort and anxiety which manifests in judgment or unkindness. The more we proudly travel with our children or go to movies, malls, or neighbors’ homes, the more they too will come to learn compassion, understanding, and non-judgment, just as we have.

Tip # 6 When traveling long distances prepare activities to keep your child engaged.

For older children, this might include computer games, DVDs, magazines, etc. When Neal was younger, I wrapped up little “gifts” in aluminum foil and let him unwrap them periodically on the trip. I remember going to a party supply store and buying bags of favors, little match box cars, airplanes, bubbles on a string, animated characters, plastic pretend food, etc. Unwrapping each package took up to three minutes.  He would then take another three minutes to play with the toy car, spin the wheels, flicker it in front of his eyes, and then line the cars on the tray before he would get bored again. I also wrapped his favorite foods in little packages, a couple crackers here, a piece of string cheese there, three apple slices. Once we we’re in the air, he was intrigued and distracted by his little presents. Once in a while he ran up and down the aisle. I just ran with him. Life happens!

Check back later this week for the rest of Elaine’s tips and subscribe to the Autism Speaks Blog to make sure you don’t miss out!

Share

Ten Tips for Vacationing with Your Child – Part 1

July 26, 2010 15 comments

This guest post is by Elaine Hall, author of the memoir NOW I SEE THE MOON: A Mother, a Son, a Miracle and founder of The Miracle Project, a theatre and film arts program for children with special needs. She is also the mother of a fifteen-year-old son with autism. Discuss the book on Facebook and follow Elaine on Twitter @CoachE.

Ahhhh, summer vacation. It’s finally here!

For many of us who have children on the autistic spectrum, long gone are the expectations of spending glorious temperate days lounging under a coconut palm in a tropical paradise while watching the kids effortlessly scoop sea-critters into a bucket of brine. Understandably, some of us may decide to forego summer fun-in-the-sun getaways.  Our experience has been that taking a family vacation is “just too difficult!” and these days, also too expensive. But with a little planning, family vacations need not be so stressful, and may even be joyful!

So what can we do to enjoy time together while on holiday?

First, it is important to consider where our children are in their ability to process and hold information, to evaluate their sensory needs, and to contemplate how well they are able to respond to stress (seemingly fun-filled environments can be completely overwhelming for our kids). Extensive preparation is key for all of these.

Tip #1 – Focus on doing something that you know your child enjoys.

Soon after I adopted my son, Neal, from an orphanage in Russia, we joined my family reunion at a beach house in Delaware. When we get to the beach, it is clear that Neal is petrified of sand, of water, of anything to do with the beach.  I make excuses to my family, “He doesn’t know the ocean. He comes from the Ural mountains in Siberia, for goodness’ sake.” Even as I defend him, I’m disappointed. I love the ocean, and I yearn to share the joy of the boundless sea with my son. Instead, we surrender, and end up spending our time on the patio of the beach house where there’s a wading pool. We’re joined by my mother, who was also raised in the mountains – the Shenandoah Mountains in Virginia, and she doesn’t like getting sandy.

Know what truly interests your child and plan your trip where you know he/she can be successful. Also, it is important to note that our children’s ability to regulate their own emotional states is largely affected by our own. So if we are anxious, disappointed, frustrated, or angry, guess who’s going to feel even more so?

Tip #2 – Prepare your child’s sensory system. Anticipate, it makes Sense!

If you decide to go somewhere you’ve never been with your child, or try new activities together, make the effort to really prepare (weeks before you take your trip, if possible). After the “failed” beach experience, one of my son’s therapists, Shelley Cox, and I take Neal close to the ocean. Shelley takes a bucket of sand and actually brings the ocean to Neal. Slowly and compassionately we allow Neal to get acclimated. First Shelley puts sand on his feet, rubbing it gently on his skin. I then realize that the hot, scratchy sand must have been irritating to his sensitive tactile system, reflecting why he avoided walking on the sand, preferring to be carried to his beach blanket. I am even clearer that Neal’s fierce preferences are not random. I better understand his world and anticipate his needs.

Each day Neal walks a few steps closer to the beach. Shelley continues to bring the various elements of our impending vacations experience to him. He smells the water Shelley brings to him; she pours it over his legs, getting a sense of his comfort zone. This goes on for seven days, until, finally, Neal walks on the sand to the ocean with confidence. For the rest of the summer, Neal is able to walk to the ocean with me. He wants to. Today, Neal loves the surf and can’t wait to jump in the waves!

Tip # 3 Rehearsals for life: Practice, Practice, Practice!

Before we fly on an airplane with Neal, we role-play everything you can imagine – packing bags, waiting in lines, taking off his shoes and going through security lines, placing luggage under the seat, wearing a seat belt, and sitting patiently. We use visuals – we watch DVDs of airplanes, go online for pictures, we pretend play with toy airplanes, look through airplane magazines. We practice placing our hands over our ears during take-off/landing and we actually visit the airport.

If he is going to meet new people, we show him pictures and tell a story about them, letting him “meet” them first in the comfort of our home. If we are visiting family members whom he hasn’t seen for a while, we show him photos of passed experiences and current photos so he can see what they look like now.

We use social stories to help make sense of new experiences. This provides Neal with a sense of control, and diminishes his anxiety.

This is the first post in a three-post series about vacationing with your child who has autism. Check back later this week for more tips and subscribe to the Autism Speaks Blog to make sure you don’t miss out!

Share

Follow

Get every new post delivered to your Inbox.

Join 1,048 other followers

%d bloggers like this: