Sunday, September 27, 2015

The California Autism Lawsuit: Love Your Neighbor?

This past week, the media has reported the case of two families in Sunnyvale, California, who filed a lawsuit against the parents of a boy with autism. Filed in June 2014, this lawsuit is now being heard in court. [To read a news report of this case, please click here.] The plaintiffs allege that the parents, who were their neighbors, did not do enough to control their now eleven-year-old son with autism and that this boy terrorized their neighborhood. Moreover, they claim that his aggressive presence in the neighborhood could reduce their property values. Even though this family moved out of the neighborhood a year ago and say they have no plans to return, neighbors fear they may return to their former home that they have not yet sold.

Since there are at least two sides to every story, the judge must determine what was happening in that California neighborhood. Are the neighbors filing the lawsuit intolerant of autism, or are they simply protecting their children from an aggressive child? Are the parents of the child with autism doing the best they can in a difficult situation, or are they negligent, failing to control their son from harming others? The courts will decide.

According to the neighbors, the boy with autism repeatedly kicked, hit, slapped, and bit people, especially younger children. As one plaintiff notes: “For us this case is not really about autism. It’s about the safety of our children. They were attacked on multiple occasions.”

Moreover, they claim that the boy’s parents and babysitters did not properly supervise him, which led to his being a threat to other children in the neighborhood. “This has to do with the parents’ responsibility to control their child,” said one of the neighbors.

Of course, parents of children with autism fear that this lawsuit could encourage intolerance toward their children and potentially generate similar lawsuits. This week, the Huffington Post published an online response to the California lawsuit by autism mom and activist Bonnie Zampino entitled “My Son Has the Kind of Autism No One Talks About.” [To read this essay, please click here.] In her heartfelt essay, she discusses the lack of true autism awareness, which she attributes to media feel-good stories about autism emphasizing rare achievements and ignoring problems associated with aggression in autism.

Drawing from her own experience with her son who has struggled with autism and aggression, Ms. Zampino explains the isolation that comes with a child whose behavior is not socially acceptable. She notes, “Because I didn’t know what my son was going to do to other children, we stopped going to the park.” She adds that they also stopped going to the library, birthday parties, and play dates.  As a result, she states, “Because of my need to isolate my son, I also isolated myself, too.”

Moreover, she challenges the comments by the plaintiffs in the California lawsuit who claim that their case is not about autism. She points out that a lack of autism awareness has caused these neighbors to fail to understand the issues the family whose son has autism are facing. She notes, “Autism can be sad. Autism can be messy. Autism can be violent. Autism can be isolating.” However, she also believes that once people truly become aware of autism, even the often hidden negative aspects, “We will become a true village, including those who can model appropriate behaviors and those who are trying so hard to learn them.”

Having dealt with Alex’s aggressive behaviors linked to autism, I know how terrifying and upsetting this behavior truly is. While I can empathize with those autism parents who are isolated from the rest of society because their children’s behavior poses a threat to others, I think this is necessary until their children’s behavior can be managed. Until our children learn to interact appropriately, we must protect others from their aggression. Moreover, we need to respect that other parents have the right and responsibility to protect their own children, just as we want our children to be protected from those who might harm them.

For long periods of time, we had to isolate Alex from the world because we could not trust him to behave appropriately. Ed or I would run errands such as grocery shopping alone while the other stayed home and supervised Alex. We could not do typical family outings because we were not a typical family; we had a child with autism who was overwhelmed in social situations and overreacted to sensory stimuli. We could not attend family gatherings because we never knew when he might suddenly take off his clothes, say inappropriate remarks, or physically attack someone out of the blue. To protect his younger cousins, we just stayed home. Although our self-imposed isolation was sad, it was necessary until Alex could behave himself in public.

Certainly, we need more autism awareness in our society, but the kind of publicity the California lawsuit brings encourages even more negative attitudes toward autism. Autism parents must teach our children to behave appropriately, even when it is difficult for them and for us. We must teach our children socially appropriate behaviors if we want them to live and interact in society. Pity parties and whining about how hard our lives are does no good for our cause. Although we may say that our children use behavior to communicate, another parent doesn’t care when our kids are inflicting bodily damage upon theirs. If we can’t make our children behave, then we need to protect them and others by isolating them.

Here’s the reality: children with autism grow into adults with autism. We must address aggressive behaviors, whether it be with therapy and/or medication, when the child is more physically manageable. As upsetting as aggressive behavior is in children with autism, adults who exhibit these behaviors pose true safety risks to others and themselves. We have explained to Alex that as a six-foot-tall young man, he cannot touch other people because he frightens them. We have also explained that someone may mistake his intended friendly gesture as a threat, and they may shove or punch him to get him out of their way, not knowing or caring that he has autism. Indeed, the media has reported cases where adults with autism have been arrested for assault, and in one terrible case, even shot to death by a man protecting his family from the aggressive behavior of a neighbor man with autism. As autism parents we must try to make our children understand the rules of society if we have any hope of their living as part of the community who doesn’t always understand them.

While the case of the Sunnyvale, California neighborhood filing a lawsuit instead of being able to cooperate and resolve their problems reasonably is disappointing, poet Robert Frost had the right idea when he wrote, “Good fences make good neighbors.” Until we help our children with autism to control their aggression, we must keep the world safe from their behavior, and we must keep our children safe from those who do not understand them. Although we would hope that our neighbors could love our children, perhaps at times this is best done from a distance with a fence––literally and figuratively––between them and us.

“And you must love the Lord your God with all your heart, all your soul, all your mind, and all your strength. The second is equally important: ‘Love your neighbor as yourself.' No other commandment is greater than these.” Mark 12:30-31

Sunday, September 20, 2015

Playing Detective

When I was a kid, I loved reading The Happy Hollisters series of books in which a family of five young siblings somehow finds themselves involved in mysteries they need to solve. Perhaps I was initially drawn to this fictional family because the oldest daughter is also named Pam, but I stuck with the series, reading every one I could find at the public library, fascinated by the ways these kids put together the clues to get to the bottom of the mysteries. Little did I know that as an adult, I would be solving mysteries of my own.

Because not enough is known about autism and because Alex’s communication skills are weak, I often find myself sifting through clues, trying to discern why he does some of the things he does. By putting together the research that I have done over the years––especially medical research––with careful observation of Alex, I can usually come up with potential reasons that have reasonable validity. Sometimes, however, I must sort through a wide variety of clues before I know the real reason.

Recently, Alex has been a little off. While his behavior has not been that bad, he just doesn’t seem quite like himself. Because we never want behaviors to escalate, we always try to get to the bottom of the problem right away. After having such a wonderful summer where he was content and cooperative, we didn’t want him to regress. Therefore, I went into detective mode and tried to figure out what was causing small changes in Alex.

Usually the culprit for behavioral challenges is yeast overgrowth in his digestive system, namely thrush, which makes his mouth and throat sore, causing him to be irritable. After dealing with yeast flares for more than three years, we recognize the symptoms and know that we must treat him immediately with antifungal medication to ease his discomfort and to prevent increasing agitation. Our experience has also taught us that yeast flares bring “abcd” symptoms: acne, behavior issues, coating of tongue, and dandruff. Fortunately, we didn’t see any of the telltale signs this time. Moreover, Alex seemed to be his usual pleasant self in the evenings, so an ongoing problem like yeast seemed unlikely. Therefore, we crossed yeast flare off our list of potential causes.

Another reason for Alex to be irritable is change. From past experience, we know that changes in routines can cause negative changes in his behavior. Although we considered that our returning to our teaching jobs after the summer off work might have bothered Alex, he seemed to be adapting to the transition reasonably well. In addition, he had maintained his afternoon schedule throughout the summer: Tuesdays with Jennifer for behavioral therapy, Wednesdays with Jessica for respite, Thursdays with Noel for music therapy, and Fridays with Jennifer for recreational therapy. Since his schedule had stayed the same, he didn’t have to adapt to any changes. In addition, we had not made any changes to his medications or supplements, so we couldn’t point to those as potential triggers for his being a little different.

After ruling out obvious causes, I then focused on potential environmental changes. While Alex doesn’t show typical seasonal allergy symptoms, such as sneezing, runny nose, or watery eyes, he has in the past acted irritable during allergy season. After checking the Weather Channel website and discovering that weed pollen has, indeed, been moderate to high in our area the past couple of weeks, I suspected that pollen could be bothering Alex. However, he usually does not want to be outside when pollen bothers him, and this week he has specifically requested to go outside in the yard, enjoying the fresh air. In fact, being outside seems to put him in a good mood, so pollen is probably not bothering him. Also, I suspected that some of the weather we’ve had lately could have affected him because he is like a human barometer who senses every change in air pressure, often acting irritable when the pressure is very high or low. Despite thunderstorms and a deluge of rain, he didn’t seem bothered by the weather.

Aside from the natural environment, Alex can also be annoyed by changes in the economy. Since he watches the business news channels faithfully, he is aware of oil and gas prices, stock market trends, and interest rates. At times, he has been very upset by high oil and gas prices and drops in the stock market. However, he has learned to take economic news in stride and not let changes upset him. In fact, he often compares various fluctuations to the stock market, knowing that things naturally go up and down, making observations, such as, “Temperatures are like the stock market; they go up and down.” Since Alex has come to realize that the economy fluctuates and watches the news without getting upset, we decided that he was not affected by the stock market, either.

After ruling out all of the usual suspects, I had to look deeper to figure out more clues and see what might be behind them. First, we noted that he typically seemed irritable in the morning and late afternoon, and he was at his best in the evenings, especially after a big dinner. During these times when he seemed off, we noted that he was anxious, impatient, fatigued, mentally foggy, and shaky. Although he has been getting a good night’s sleep every night, he still seemed tired in the morning. However, he would be energetic and active physically and mentally every evening. I wondered if he needed for his morning medications to take effect, but even when they should have been helping, he still was not quite himself. Moreover, when he was at his best every day, his medications would have been wearing off. I even considered that some of these symptoms could be side effects of some of his medications, especially the tremors that go along with lithium that he takes to regulate his moods.

Another factor I considered was the change in Alex’s waistline. Since Alex weighs himself every night before he goes to bed, I noticed that he has lost some weight. Although he looks quite healthy and has lost the belly weight caused by some of the medications he takes, something has caused him to drop those pounds. In thinking about his eating habits, I realized that once his obsessions about eating for set amounts of time or insisting upon three servings of food every meal had passed, he wasn’t eating as much as he used to eat. In addition, he didn’t seem interested in eating breakfast, nor was he snacking as much as he used to. Not wanting to force him to eat, we trusted that he knew what his body needed, but perhaps this was the culprit.

Realizing that he was at his best after eating a large dinner, I began to wonder if Alex was off whenever his blood sugar was low. After some quick research, I discovered that symptoms of low blood sugar include the following: fatigue/sleepiness, shakiness/tremor, anxiety, irritability/impatience, mental confusion, and dry lips. Alex had all of these symptoms. Consequently, I decided we needed to change his eating habits to see if eating more would alleviate the symptoms we’d been observing.

This week, Ed has been fixing Alex breakfast that includes fresh fruit every day, and we have increased the amount of food he eats for lunch, as well. In addition, we have been offering him healthy snacks, such as hummus, tomatoes, and bananas, all of which he especially likes. After just a few days of this new healthy diet, he already seems better. He has been more active mentally and physically in the mornings, and he doesn’t seem as anxious and irritable in the afternoons. Thankfully, he can afford to gain some extra weight, so we can feed him more without worrying about that consequence. Hopefully, we have figured out the problem and the solution, both of which are fairly simple. While I’m thankful that my childhood reading habits taught me the value of looking for clues and trying to solve mysteries, I’m even more grateful that God shows us the way and gives us the wisdom to help Alex be his best.

“Listen as Wisdom calls out! Hear as understanding raises her voice!” Proverbs 8:1

Sunday, September 13, 2015

Reality Check: Adults with Autism and a Lack of Independence

Last week, Ed and a colleague had a conversation about their families, and his colleague kindly showed interest in how Alex is doing. She asked where Alex is living and if he can drive. Thinking perhaps she didn’t realize Alex’s limitations, Ed reminded her, “You know he’s autistic, don’t you?” Although she did remember that Alex has autism, she didn’t know the full extent to which autism impairs his independence. Ed went on to explain that Alex is living at home with us and will likely be living with us for a long time. In addition, he does not have a driver’s license, and that’s a good thing. With his impaired motor skills and the medications he takes for anxiety, he would be a danger behind the wheel. We know this because we have seen him “drive” Dale Earnhart, Junior’s race car on the NASCAR video game at our local arcade. When he’s not running into the race track walls, he’s running into the backs and sides of other cars. He will not be driving anytime soon, not even “slow on the driveway every Saturday” like Rain Man’s Raymond Babbitt.

Here’s the reality––most adults with autism cannot live independently. Earlier this month, The Indiana Resource Center for Autism at Indiana University posted the following on Facebook: “Today, the unemployment rate for those on the autism spectrum is as high as 70 or 80 percent.” However, even they seem to need a reality check, as they added, “From the first moment of diagnosis, we need to be teaching skills that will promote a better outcome for our students/children.” I have some news for them: we have been teaching those skills for more than twenty years, and Alex is still currently unemployable, due to his impaired motor, social, and language skills, all of which we have been addressing through multiple therapies and interventions. For example, every day since he was little, we have worked on his manners by reminding him to say “Please” and “Thank you,” yet he still needs constant reminders to say these polite phrases. He’s not intentionally rude; he’s just socially impaired, despite all our best efforts to teach him manners.

Last weekend, The New York Times published an essay by Eli Gottlieb entitled “Adult, Autistic and Ignored” that addresses the problems adults with autism face. As the younger brother and guardian of his older brother with autism, he has seen firsthand what life is like for adults profoundly affected by autism. He points out that 39% of young adults with autism receive no services after high school, and about 90% of adults with autism are unemployed or underemployed. In addition, he notes that little research has been done regarding adults with autism since most autism research focuses upon children. Specifically, he quotes a professor at University of North Carolina at Chapel Hill, Dr. Joseph Piven: “There is almost no literature on older adults with autism in the field, so we virtually have no knowledge base.” If no one bothers to study adults with autism, no one knows what their needs are or how to help them.

The recognition that adults with autism need better services is not a new concept. In 2007, Autism Advocate published an article entitled “When the School Bus Stops Coming: The Employment Dilemma for Adults with Autism” by Dr. David L. Holmes. This article addresses the problems that occur once children with autism are too old to receive supports from their local school districts. This article focuses upon the lack of available services, the importance of appropriate placements, and potential employment options for adults with autism. In addition, the article emphasizes planning for the future, specifically, putting supports into place, such as Medicaid waivers. Dr. Holmes ends the article optimistically saying that progress is being made in helping young adults with autism make the transition from school to work; however, the reality is that this is not so. Most adults with autism are unemployed and living with their parents.

In the September 2013 article “Few Young Adults With Autism Living Independently,” Shaun Heasley cites research that shows that nearly 9 in 10 young adults with autism have spent time living with a parent or guardian, and most have never lived independently. Quoting researcher Kristy Anderson, “The evidence presented in this study suggests that the vast majority of this population will be residing in the parental or guardian home during the period of emerging adulthood.” I might add that these adult children will probably be living with their parents or guardians even longer as funding for supported living and availability of group homes becomes even more limited as more and more children with autism become adults and tax an already overburdened system.

Despite all of our best efforts to prepare our children for adulthood, many of our children with autism cannot live independently. Not only are they unable to find appropriate jobs, but they also need supervision and assistance with daily living skills, which means they require expensive and not always available supported living facilities, or more likely they must live with their parents or guardians. In a wonderfully candid essay, "I Never Dreamed," published this week, autism dad Jeff Davidson outlined the reality of how much is required to care for his son who has autism. Among the many daily tasks he lovingly performs for his son, he states, “I never dreamed he would always need our help with bathing, getting dressed, shaving, and all of the other basic needs.” Unlike his son, Alex is mobile and verbal, yet he also needs a great deal of help with his daily living skills, which is why he lives at home with us.

To be honest, Alex in many ways is a six-foot-tall toddler. Every day, we must help him with meal preparation, getting dressed, grooming (including washing, drying, and combing his hair, along with shaving, brushing his teeth, and keeping his fingernails and toenails clipped), and cleaning his eyeglasses and reminding him to wear them. Thankfully, he is very cooperative with us and likes to be clean and neat, so he doesn’t mind that we tell him he needs to wear deodorant, and he happily takes a bath every day. In addition, we administer his medications and vitamins three times a day, and he willingly swallows every pill, which is another blessing. As his personal assistant, I arrange all of his appointments, consult with his team of therapists and other professionals who work with him, take care of his finances, deal with the insurance company, and do his laundry. (To be fair, I also make appointments and do laundry for his dad.) Since he cannot drive, Ed and I chauffeur him wherever he needs to go.

While we are happy to take care of our beloved son who needs our help and thankful that he has made significant progress in his behavior, we also want him to become more independent. Knowing that he will probably outlive us, we hope that he can live a fulfilled life on his own someday. In the meantime, we keep working with him to develop the skills he will need, praying that God will provide everything Alex needs so that one day he can be independent and not constantly rely upon us or anyone else for most of his needs. As we wait, we hold onto our faith, trusting that God will always take care of Alex.

“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

Sunday, September 6, 2015

Filling a Need

Some people get it. When they do, we realize that God has put them in our path to fill a need; their presence in our lives is no coincidence. Finding the right professionals to work with our children who have autism is an important task we autism parents face. Over the years, we have been fortunate to find some outstanding individuals to work with Alex while others have been less impressive. At times we have stayed with some professionals longer than we probably should have, not ready to make a change. Sometimes God has to push me out of my comfort zone with both hands so that I know that it’s time to do something new. That happened last fall, and my full understanding of the need for change was clearly reinforced this past week.

Last August, when we took Alex to the pediatric dentist he had been seeing for nearly ten years, we were told that his upper twelve-year molars were badly decayed and would need to be removed. This came as a shock to us because his teeth had been fine when we had taken him six months earlier for a check-up. What was even more frustrating was that we were told this could wait unless the pain became so severe it kept Alex awake at night, which struck us as negligent. In addition, the dentist left this rather important news to a hygienist to relay to me instead of talking to me himself. This was the same dentist who had condescendingly dismissed me repeatedly anytime I had asked about Alex’s wisdom teeth, telling me that we weren’t going to worry about them.

Unsatisfied with the information they had given, I decided to make an appointment with my family dentist, whose judgment and skill I completely trust. He wisely had a panoramic x-ray taken of Alex’s teeth, which revealed that his wisdom teeth were badly impacted and likely damaging the roots of his twelve-year molars, which probably accounted for their decay. He recommended removing the twelve-year molars and the wisdom teeth at the same time and referred us to an experienced oral surgeon. As I explained in my November 9, 2014, blog entry “Healing,” Alex came through the surgery to remove his molars and wisdom teeth­­––as well as the recovery afterward––amazingly well, and we were thankful to have this procedure done by such a skillful doctor.

After this experience, I began to question the pediatric dentist’s decision to ignore my concerns as a parent regarding Alex’s wisdom teeth. Perhaps if he had taken my questions more seriously, Alex would not have lost his twelve-year molars due to the damage by the wisdom teeth. Moreover, I was not happy with his dismissive attitude toward me and insistence that any dental procedures done on Alex be performed under general anesthesia, which carries its own risks. Consequently, I decided it was time for a change. For his next regular dental appointment in February, we took Alex back to our family dentist. Encouraged by the kindness and compassion shown by both the hygienist and the dentist, Alex complied beautifully with having his teeth cleaned and checked, and we felt this was a sign we had made the right decision to change dentists.

When we took him again a few weeks ago for his six-month appointment to have his teeth cleaned and checked, we were pleased that Alex was quite calm and comfortable at the new dentist’s office while they worked on his teeth. However, we were a little disappointed to discover that he had a small cavity. Nonetheless, our dentist felt confident that Alex could handle having the cavity filled because he had been so good during the cleaning and check-up appointments. In addition, we were able to schedule an appointment to have the tooth filled the next day, which meant that we could get this procedure done before I had to go back to school the following week. Or so we thought.

The next day, the appointment began with putting numbing cream on a cotton roll as preparation for the numbing shots. As the numb began to spread through Alex’s mouth, he started to panic at the strange sensation he’d never felt before. (When he’d had his first two cavities filled two years earlier, he had been under general anesthesia instead of a local anesthesia.) He also wasn’t very happy about having the wad of cotton under his upper lip and complained that he had a fat lip. Although he never really escalated, he was anxious and kept grabbing my hands, seeking reassurance. Even though we tried explaining to him that this was temporary and that his lip wasn’t really fat, he was still unnerved (pun intended) by the situation.

Fortunately, our compassionate dentist understood Alex’s anxiety and offered an excellent idea. He gave us a tube of numbing cream and long handled cotton swabs to practice at home with Alex so that he could get used to the sensation of numbness and realize that the feeling does wear off in time. Additionally, he reassured us that Alex’s tooth could wait a few weeks without worrying about further damage, so we could reschedule the appointment when we felt Alex was ready to handle it. Most importantly, he emphasized to us that he didn’t want Alex to be scared, and he didn’t act a bit inconvenienced that Alex wasn’t up to having his tooth filled that day.

After practicing with the numbing cream at home, Alex became comfortable with the sensation of having his mouth numb, and I went ahead and made another appointment to have his tooth filled. Truthfully, I had a lot of trepidation about whether he could handle the numbing shots, the drill, and everything else involved in repairing the tooth. Nonetheless, we prayed that he would not get upset and put our trust in God and our dentist that everything would be okay.

Last Thursday, I scheduled a noon appointment: after lunch, between The Price Is Right and Jeopardy!, and at a time when he is usually fairly mellow. The dental assistant took us back to a large private room where Ed and I could also stay with him comfortably and where they could close the door so that he wouldn’t hear noises from the other procedure rooms. After turning on the television to a baseball game that provided a welcome distraction, our dentist and his assistant compassionately and calmly took care of Alex’s tooth, preparing him for every step of the process by explaining what would happen and praising him for being so cooperative. Thankfully, Alex was remarkably calm and didn’t seem bothered a bit by anything they did to his mouth. He appeared completely comfortable and relaxed the entire time he was in the dentist’s chair, which was a blessing. The dentist did everything possible to reassure Alex, and Alex trusted him completely.

In fact, things went so well that with our approval, the dentist also sealed another tooth to prevent decay since Alex was already numb, and the assistant smoothed a tooth that had been chipped a while ago so that it would not bother his lip and would look better. Not only did Alex sail through the planned procedure, but he also handled the extras added at the last minute quite well. Of course, Ed and I were extremely relieved that things went smoothly, and we were especially proud that Alex handled perfectly a new situation that many people find difficult. We also truly appreciated the understanding and wisdom of our dentist, who knew what Alex needed to feel safe and comfortable and waited until he was ready.

Consequently, we know that God has led us to change dentists to one who can provide what Alex needs. We need someone whom we can trust to take care of Alex and not only make him feel comfortable in a new situation but also provided a good first experience that will make him not afraid to face similar situations in the future. As Alex now ends his nightly prayers, “God bless Dr. Lyzak.”

“He will once again fill your mouth with laughter and your lips with shouts of joy.” Job 8:21