Sunday, February 23, 2014

Social Skills in Adults with Autism

Yesterday, I was reading a rather discouraging article about autism in adults entitled “Social Skills, Contentment Evade Adults with Autism” by Jessa Netting. [To read this article, please click here.] Based upon two studies of adults with autism (which is a field with limited research since most studies focus upon children with autism), scientists found that while adults with autism made progress in some skills over time, they did not improve in others. Specifically, the studies found that adults with autism tended to improve in their adaptive living skills, which include tasks performed daily, such as grooming and managing money. Adults with autism also generally improve in their independent living skills—perhaps because their adaptive living skills progress over time—as evidenced by their ability to work at a job and live away from their parents. In addition, repetitive behaviors often found in children with autism tend to decrease in adulthood. However, these studies also found that language, cognitive, and social skills tend to remain stable in adults with autism and do not improve over time. Moreover, the research also showed that quality of life, which indicates contentment and satisfaction, tends to be lower in adults with autism than in typical adults.

Now that Alex is an adult, the findings of this research bother me because all parents want their children to reach their full potential and to find contentment in life. What bothers me more, however, is that this research goes no further at this point to discover why three critical skill areas—language, cognitive, and social—remain stagnant in adults with autism. While I’m not a scientist, I have had the opportunity to observe autism first-hand on a daily basis for more than twenty-two years, and I have some theories of my own about what may be occurring. When autism is first diagnosed in young children, professionals urge parents to seek early intervention at a seemingly frantic pace, emphasizing how critical early intervention is. After Alex was diagnosed, we enrolled him in special needs preschool, began speech, occupational, sensory integration, cranial, and visual therapies, and worked with a doctor on biomedical treatments. In addition, I did floor-time therapy with Alex to increase his interactive skills. Over time, these therapies are typically phased out when the child makes enough progress to “graduate” from the programs. As the child matures, more effort is placed upon independent living and adaptive skills so that he/she can function in life without needing parents or other adults to handle these tasks.

Another consideration for the lack of improvement in skills may be that at age 22, most students with autism no longer receive educational services. With limited community resources, many adults with autism may not be receiving the structured programs and training they need to continue developing their skills. Also, they may not be receiving therapies they did as children, such as speech, that may still assist their progress. If these adults are not getting the help they need in structured programs, they probably can’t develop the skills they need to be successful and to have satisfying lives. What can be done to prevent this stagnation of language, cognitive, and social skills so that adults with autism can find contentment in their lives? In time, the staggering number of children who have autism will become adults and will need support and services so that they can function in society and find fulfillment in life. I fear that communities are not preparing for that reality, and adults with autism and their families will suffer the consequences.

When Alex was 20, we placed him on a waiting list for a day program that serves adults with a variety of disabilities, hoping this would provide him with opportunities to continue developing his skills. Mostly, however, we wanted him to have the chance to interact with a variety of people so that he could increase his social skills. More than a year and a half later, we are still waiting and have accepted that we may be waiting a long time for that program. Fortunately, Alex qualifies for state disability benefits that provide services to help us improve his skills. As I explained in a previous blog entry, “Plan B,” we have been blessed with a wonderful behavioral therapist who works with us twice a week to address Alex’s anxiety, behavior, and social skills. Thanks to his excellent case manager, we were able to reconnect with our former music therapist, a young man who is a terrific role model for Alex. Three afternoons every week, we have these support services helping us improve Alex’s language, cognitive, and social skills as he interacts with these therapists and learns crucial life skills. With these interventions, Alex is getting better in many ways, and we are truly grateful for the progress he is making. Moreover, he is happy and content, which is a tremendous blessing.

On Friday, his behavior therapist planned an activity that focused upon life skills. She had Alex pick out a recipe he would like to make, and they made a grocery list of the items needed to make gluten-free and dairy-free banana raisin muffins. Then the three of us went shopping at the grocery store where Alex found the needed items and placed them in the grocery cart he pushed, and he paid the clerk when he was finished. After that, Alex and his therapist followed the recipe and made the muffins with her guidance. Although Alex and I have baked together over the years, this experience was novel because he was following the directions of someone other than Ed or me. Alex handled the activity very well, enjoyed himself, and felt a sense of accomplishment. In addition to activities like this, his therapist plans to take him to restaurants and have him order his own food; to prepare him they will practice with menus and social stories so that he will know what to say and do. While God has given us the resources and good people Alex needs to develop these skills, unfortunately, not all adults with autism have these opportunities.

As I re-read the article about adults and autism, I found one quote especially interesting: “What became increasingly obvious, the more we were looking at all the studies together, was that we just cannot make generalizations about adult outcomes in autism,” said Iliana Magiati, assistant professor of clinical psychology at the National University of Singapore. Perhaps the reason why generalizations cannot be made is because critical interventions can make a difference, as we have seen with Alex. As more children with autism become adults with autism, resources must be available so that they can continue to develop their skills. Only then will we have adults with autism who can lead independent and content lives, which is the hope of all parents whose children have autism.

“Getting wisdom is the wisest thing you can do! And whatever else you do, develop good judgment.” Proverbs 4:7

Sunday, February 16, 2014

Recent Brain Research and Autism

A few weeks ago, I ran across some fascinating autism research that led me to those rare and satisfying “Aha!” moments I occasionally enjoy when I’m looking for answers about autism. The first, which the CBS News reported last month, [To read this report, please click here.] came from research done at Vanderbilt University regarding why some children with autism have extreme reactions to sound. Through their studies, scientists discovered that for many of these children, sound is out of sync with the visual cues they see. Thus, a delay occurs between what they see and what they hear, much like watching a badly dubbed movie or a television show having technical difficulties where the words and pictures do not match. Specifically, the researchers determined that some children with autism have a sound processing delay in which they see the picture a half second before they hear the sound. The lead author of the study, Dr. Mark Wallace, professor of hearing and speech sciences and psychology, noted that this may explain why many children with autism cover their ears: “They’re trying to filter out that confusing information and focus on only one sense.”

To me this theory makes perfect sense, considering that even typical people sometimes close their eyes when they want to concentrate on something they need to hear or plug their ears when trying to read something in the presence of background noise, such as the television. I know that when I have tried to watch shows where the sound and pictures don’t match, I find myself closing my eyes to focus on the auditory input and get rid of the confusing visuals. However, my strength is in listening, whereas Alex, like many people on the autism spectrum, is quite visual. Blocking out sound instead would be preferable for those who rely heavily upon visual cues.

To help children with autism overcome this confusion between sight and sound, auditory processing therapy is recommended to speed up their processing of sound so that it matches what they see. While a variety of programs for this type of therapy exist, we did an in-home program known as Earobics, and Alex’s speech therapist also worked with him using the Earobics program. While this computer-based therapy focuses upon developing auditory processing, it also engages the child through a fun game-type format with entertaining characters, such as Katy the Caterpillar and Karloon, a clown with balloons. For Alex, this program definitely helped his ability to process what was said to him, and we were thankful to find a simple and relatively inexpensive solution to this problem. While this program is now marketed primarily as a way to help children learn to read, I still believe that children with auditory processing issues can benefit from Earobics. [To learn more about Earobics, please click here for their website.]

Another article I ran across a few weeks ago suggests that the brains of children with autism create more information while at rest. [To read this article, please click here.] Reported in Science Daily last month, this research from Case Western Reserve University and the University of Toronto found that children with autism typically create 42% more information than typical children when the brains of both groups are at rest. Under the direction of Roberto Fernandez Galan, an associate professor of neurosciences at Case Western, this study focused upon recording brain activity using magnetoencephalography (MEG).

Because children with autism seem to produce significant information while their brains are resting, the scientists theorized that this phenomenon may explain some stereotypical behavior and misconceptions associated with autism. For example, people with autism are thought to be detached from their environment and less interested in social interaction. The scientists believe that this excess production of information from external stimuli may explain why people with autism sometimes withdraw into their own worlds: they are focusing upon all the additional information their brains are producing. We have seen this with Alex, who appears to spend a great deal of time daydreaming, yet will suddenly make comments reflecting interesting insights. This research also supports the “Intense World Theory” of autism developed by neuroscientists Henry and Kamila Markham, also parents of a son with autism spectrum disorder. In this theory, autism results not from cognitive deficits but from neural circuitry that hyper-functions, causing a state of over-arousal, as noted in sensory overload common in people with autism. [For more information about Intense World Theory, please click here.]

According to the Intense World Theory, people with autism find themselves overwhelmed by their own emotions and the emotions of others. While people with autism are mistakenly perceived as lacking empathy or concern for others, they actually care deeply, to the point that they must shut down and withdraw from others. In addition, people with autism often develop rigid routines in an attempt to control their environments, relying upon details and repetition to cope. With Alex, we have noted that he worries about others, especially their health, to the point that he becomes anxious and upset. Clearly, he does not lack empathy; he just doesn’t know how to deal with his emotions. Also, he establishes routines and relies upon measurement, such as time and height, to classify and organize. What looks like obsessive-compulsive behavior may actually be a brilliant coping skill to deal with a brain that takes on too much information. However, sensory integration therapy and behavioral therapy seem to help him deal with an overwhelming world. Hopefully, continued research into how the autistic brain works will reveal that instead of being a disability, the mind of the person with autism could be assisted with therapy to reveal greater strengths and insights than ever thought possible.

“That is what the Scriptures mean when they say, ‘No eye has seen, no ear has heard, and no mind has imagined what God has prepared for those who love Him.’” I Corinthians 2:9

Sunday, February 9, 2014

The Small Stuff

Blame it on cabin fever, wacky hormones common in women my age, or my need to control all the little details of life. Whatever the reason, little things are getting on my nerves this week. Normally, I’m reasonably good-natured and take things fairly well in stride. Being an autism mom has taught me not to sweat the small stuff in life. However, this week I have found myself aggravated to the point I can totally empathize with my equally good-natured close friend who sometimes confides in me that she wants “to punch people in the face.” As her ally, I have offered to hold the offenders while she vents her frustration, knowing that neither of us, both petite and gentle souls, would ever act on these feelings of irritation. Sometimes just saying it aloud makes both of us feel better.

Last week when “official” groundhog Punxsutawney Phil saw his shadow, tradition holds that spring won’t arrive for another six weeks. Of course, no scientific basis for the groundhog’s prediction exists, but somehow the “confirmation” of the likelihood that winter will continue for another month and a half makes me weary and wanting to punch the groundhog in the face. (Of course, I would never really take on the rodent because frankly those things are creepy with their big teeth.) Last winter we only had six inches of snow total here in Northwest Indiana; this year we have had ten times that amount, along with extreme temperatures and wind chills well below zero that have limited time outdoors. While I generally don’t mind snowy cold weather that much, this year’s extreme weather has pushed me to my limit.

On top of the weather, little aggravations with my job are getting to me more than they usually do. My seventh grade students who want to sharpen their pencils in the middle of class despite constant reminders to do so before class starts and then forget to use those same pencils to write their names on their papers are testing my patience midway through the school year. I find myself counting to ten so that I don’t unleash my irritation on the sixth student who fails to follow the guidelines, and so far, I’ve been successful in keeping my annoyance under control by sighing softly instead of nagging them. This is good.

Even when I’m trying to keep things rolling along, unexpected events can require making changes I’d rather avoid. A few weeks ago, the local compounding pharmacy that makes Alex’s progesterone cream to treat his acne and inflammation burned down in a terrible fire. Although they were able to refer me to another compounding pharmacy until they are able to relocate, I felt sad to lose them even temporarily because their staff has always been helpful, kind, and efficient in billing insurance as well as making refills automatically in a timely fashion. By contrast, I discovered yesterday that our mail carrier has not been making deliveries because the snow is piled high near our mailbox, despite Ed’s best efforts to clear snow from the street near the mailbox. After wondering why we didn’t seem to have mail for a couple of days, I received an e-mail from Amazon yesterday that a package I was expecting had been returned to them as “undeliverable.” I’m not certain why our newspaper carrier can deliver our newspaper to the mailbox faithfully, but our mail carrier apparently cannot. Hopefully, we will be able to resolve this problem soon.

Last weekend, looking for a distraction from little annoyances, I decided to get out and do some “retail therapy” by shopping alone. Telling Alex that I was shopping for girls’ clothes, I was able to escape from the confines of home and just wander down the housewares aisle at Target, even stopping to look at “girls’ clothes” so that I had told Alex the truth. Finding some pretty little dishes in the clearance aisle and a colorful scarf on sale, I had successfully conquered my winter blahs. I should have stopped there. When I went to another store, I found myself aggravated by a clerk at the checkout. She asked me if I had any percent-off coupons, and I told her that I thought I had a 20% one that I had left at home. She snippily informed me that there weren’t any current 20% off coupons but that she would give me 15% off, acting as though I were a liar and she were doing me a favor. Despite my desire to leave the item on the counter and come back with the 20% off coupon (which I found when I came home) to prove her wrong, I took the high road and thanked her for her “generosity.”

Yesterday, I had to call in some of Alex’s prescriptions for refills and was told by the robot voice for the automated refills that two of them were out of refills, requiring the pharmacy to check with the doctor. Knowing that this information was incorrect and that I couldn’t hurt the automated voice’s feelings, I said, “No, Stupid—you’re wrong,” and I hung up the phone annoyed. After doing some checking of Alex’s records (and I am a whiz when it comes to keeping track of records, leading my colleagues to refer to me as “Pam-o-dex”), I discovered that the automated system was referring to the old prescription from August that had run out of refills and not the updated one from December. After calming down, I called to talk with a real person and was fortunate to get my favorite pharmacist who was not only pleasant but also was able to fix the problem immediately. She could teach the snippy clerk at Kohl’s a lesson in customer service.

On top of the little aggravations, this week Ed has had additional obligations with his job, which has shifted the balance of responsibilities for Alex even more heavily to my side of the parenting. From the time that I get home from working with my pencil-sharpening seventh grade students until the time Alex goes to bed, he has been almost exclusively my responsibility because Ed hasn’t been home. Aside from the stresses of taking care of a child with autism, I foolishly add to my responsibilities my own expectations of keeping everything perfect. Several times this week, I have heard in my mind the sweet voice of the late Karen Carpenter singing, “I know I ask perfection of a quite imperfect world and fool enough to think that’s what I’ll find.” Then I remember that not everything in life is going to run smoothly, no matter how hard I try to control things.

Yesterday, as I was thinking about how I’ve been getting frustrated lately with those who are not as organized as I am and with the little things in life that arise to interrupt my careful plans, I had an “aha” moment. The reason why all these insignificant things are bothering me is that Alex is doing really well right now. In fact, he had three fantastic sessions this week with his behavioral therapist and his music therapist. Moreover, he and I have enjoyed our evenings hanging out together this week while Ed has been involved with meetings and receptions. Instead of fretting over what he’s doing or not doing, I am paying too much attention to things that I normally ignore. I’m sure these distractions keep me from truly enjoying his progress, and I must ignore them as I did when I was overwhelmed during Alex’s difficult phases. Instead of being frustrated with meaningless annoyances, I need to be thankful that God is moving Alex in the right direction. As the saying goes, I am now, “too blessed to be stressed.” So, even if the snow piles up, my estrogen goes down, and my OCD runs rampant, I am thankful that God, who is even better organized than I am, has everything under control and is making Alex better. Nothing in my life is more important than that.

“But as for me, I will sing about Your power. Each morning I will sing with joy about Your unfailing love. For You have been my refuge, a place of safety when I am in distress.” Psalm 59:16

Sunday, February 2, 2014

Simple Blessings

Like any parent, I spend a lot of time brainstorming ways to help my child. As an autism mom, those concerns often require a creativity to meet Alex’s needs. Sometimes things fall into place so suddenly that I’m convinced God has had a hand in the matter, creating simple blessings and reminding me that He is taking care of Alex and just allowing me to assist Him. Recently, I have seen how small things can bring great joy to Alex, and I know the idea behind them was divinely inspired.

In early December, Alex started asking every night if he could see the stars. From an early age, Alex has had in interest in astronomy, avidly studying the planets and constellations. In fact, at one point, he told us that he wanted to be an astronomer when he grew up. The reappearance of this interest probably motivated him to ask about seeing the stars. Unfortunately, we have had so many cloudy nights this winter instead of the clear skies he needed to see the stars. Night after night, I would have to tell him that the stars were hidden behind the clouds. Even though he was disappointed, he never became discouraged, for he would ask again to see the stars the following evening.

With Christmas approaching, I starting looking for gifts for Alex that would appeal to his renewed interest in astronomy and wished that he could, indeed, see the stars. Suddenly, an idea popped into my head—a projector than shone the constellations on his ceiling would be the perfect gift. As I searched Amazon online for something like I had pictured in my mind, I found the POOF Slinky Science Space Theater Light-up Ceiling Planetarium. Despite the funny name, this item seemed to be exactly what I was seeking with a reasonable price, and I ordered it for Alex. Of course, I was pleased that this gift has become one of his favorites. Every evening, he waits with anticipation for darkness to arrive and will excitedly ask if he can turn on the star projector. With the constellations shining brightly on his ceiling, Alex lies snuggled in his bed, happy now that he can always see the stars at night.

Another simple solution recently arose out of the blue that keeps Alex content in the morning. For several weeks, Alex has apparently pestered Ed every morning while I’m at work, asking the same questions repeatedly: “Where is Mommy?” and “When is she coming home?” and  “Is she shopping for girls’ clothes?” While the first two questions make sense, I can explain the third one. Whenever I want to go shopping by myself, I tell Alex that I’m going shopping for girls’ clothes—something he has no interest in doing, so he doesn’t feel as though he’s missing out on any fun. Anyway, even though Alex knew where I was and when I would be home and that I was not shopping, he needed to ask those questions. Similarly, he would ask me basically the same questions about Ed when he was at work in the afternoon: “Where is Daddy?” and “When is Daddy coming home?” and “Does Daddy have a meeting?” (He knew that Daddy wasn’t out shopping for girls’ clothes, so he had to come up with a new angle for that third question.)

As I thought about Alex’s routine of questioning our whereabouts, I realized that he needed reassurance that we were safe and that we would be home on time, and an idea popped into my head about how I could let him know where I was and when I would be home, even when I was at work. I decided that I would e-mail him every morning from work to let him know I was thinking about him and to let him know that I was fine and would be coming home soon. Fortunately, these simple notes have worked wonders, according to Ed, who is pleased that Alex doesn’t keep asking him the same questions all morning. Apparently, Alex looks forward to my e-mails, which not only make him happy but also ease any anxiety he has about where I am and when I’ll be home. Moreover, he emphasizes how important they are to him because every weeknight before he goes to sleep he reminds me to send him an e-mail the next morning.

Another example of how little things can mean so much to Alex occurred this week and involved a bit of mystery. Several months ago, I found in my mailbox at school a Kenny Rogers gospel CD with no note of explanation nor any identification as to who had kindly given me this thoughtful gift. Obviously the friend who had given me the CD knew I like country music and traditional hymns, so this was a perfect combination. I kept the CD at school for a while and would play it before students arrived, enjoying the inspirational songs. A few months ago, I brought the CD home and placed it on the shelf with other CD’s and to be honest had forgotten I had it. This week, Alex found the CD in the midst of several others and asked me if he could play it. As the first song, “Will the Circle Be Unbroken?” played, Alex danced happily around the kitchen. Listening to each song, Alex showed contentment as he smiled and swayed to the music. As the familiar hymn “Leaning on the Everlasting Arms” played, I heard him softly singing along with Kenny Rogers. As much as watching Alex brought me joy, I suspect that Alex’s happiness pleased God, too.

That evening I posted on Facebook about my mysterious CD and the joy it brought Alex and me, hoping that the person who gave me the CD might reveal himself or herself. Although I still don’t know who gave us this gift, I found the comments that my friends and family made to be interesting and insightful. One friend commented that only God would know how much those hymns would mean to Alex and had prompted someone to give that gift, not just to me, but also ultimately to Alex. I would add that in blessing Alex unexpectedly, my blessing was even greater than the CD because Alex’s joy brings me great joy as his mother. A simple act of kindness blessed both of us in ways only God could foresee. As I sometimes get bogged down in the day-to-day tasks of caring for Alex, I need to remember that God always takes care of our needs, even in the seemingly small ways that remind us of His presence, goodness, and faithfulness.

“I will answer them before they even call to me. While they are still talking about their needs, I will go ahead and answer their prayers!”  Isaiah 65:24