Sunday, August 30, 2015

Risperidone and Autism

Dealing with aggression in autism, especially in children who have reached adult size, proves one of the most difficult challenges for parents of these children. Currently, the FDA has only approved two drugs for irritability in autism—behavior that includes aggression, temper tantrums, and self injury––risperidone and aripiprazol, whose brand names are Risperdal and Abilify. While medication can help address many of the behaviors associated with autism, parents and doctors must also weigh the potential negative side effects against the potential benefits drug companies tout.

In her April 28, 2014, article “Risperidone use in children carries heavy risks” published online by Simons Foundation Autism Research Initiative, Emily Anthes clearly addresses the risks and benefits of the drug risperidone, which is commonly prescribed to children with autism who display aggressive behaviors. Not only is risperidone the first drug the FDA approved for use in children with autism, but it is also the most widely used drug for children with autism. Originally, risperidone was used to treat schizophrenia, and the FDA approved this use in 1993. In 2006, the FDA also approved risperidone for the treatment of irritability in children with autism ages 5-16.

In 2002, clinical trials of children with autism aged 5-17 taking risperidone showed 57% reduction in tantrums, self-injurious behaviors, and aggression. Of those who responded favorably to the medication, 70% continued to show improvements after taking it for six months. However, not all children show this positive response to risperidone, and the negative behaviors return when the medication is discontinued. Moreover, the drug does not improve many behaviors associated with autism.

Additionally, risperidone has been associated with negative side effects, including drowsiness, significant weight gain, and hormonal changes. Specifically, children taking risperidone gain an average of six pounds within eight weeks of taking the drug. This weight gain carries even more concern in that it may not be temporary. Jeremy Veenstra-VanderWeele, the medical director of the Treatment and Research Institute for Autism Spectrum Disorders at Vanderbilt University in Nashville, Tennessee, notes, “You may change the body shape or body fat distribution in a child for the rest of their life.” This weight gain may also lead to other more serious metabolic issues.

A less common side effect, tardive dyskinesia, which manifests as involuntary repetitive movements, such as facial grimaces, tongue thrusting, and finger movements, has also been associated with risperidone. If the drug is stopped early enough, these movements may cease. However, even if the drug causing the movement is discontinued, the tardive dyskinesia may become worse and may be permanent.

Along with problems associated with weight gain, risperidone can cause hormonal issues in children taking the drug because it increases prolactin levels. Secreted by the pituitary gland, prolactin, if increased, can cause sexual dysfunction, lactation in girls, and gynecomastia, or swelling of breast tissue, in males. In fact, in Feburary 2015, a Philadelphia jury awarded a twenty-year-old man with autism $2.5 million after he developed size 46DD breasts as a side effect from taking risperidone from 2002-2006.

By the end of 2013, 500 plaintiffs had filed personal injury lawsuits against Johnson and Johnson, the parent company of Janssen Pharmaceuticals, who produces risperidone. In November of 2013, Johnson and Johnson agreed to pay $2.2 billion to resolve claims that they had improperly marketed Risperdal and two other drugs as having unproven benefits for elderly patients with dementia and children with autism.

In her article “Pharma company may have downplayed side effects of autism drug” published online August 20, 2015, by the Simons Foundation Autism Research Initiative, Jessica Wright addresses these serious side effects associated with risperidone. In a lawsuit filed against Janssen Pharmaceuticals, evidence has been presented that a 2003 study omitted data regarding the side effects of risperidone. Specifically, the study concluded that there was no link between the increased prolactin in boys and the development of gynecomastia.

This 2003 study of 700 children taking risperidone used data to show that prolactin increased the first two months on risperidone but returned to normal levels after five months on the drug. However, an earlier manuscript of this research has been found that includes two data tables that were not included in the published version of the research. This conveniently excluded data that shows a correlation between increased prolactin and side effects was never provided to the FDA for obvious reasons. This failure to disclose known serious side effects not only suggests deceit on the part of the drug company, but revealing this information also makes them open to scrutiny and lawsuits by those damaged by the drug.

On a personal level, when Alex first exhibited aggressive behaviors in his teens, two doctors recommended that he take risperidone. However, I had done enough research to know the potential side effects and decided that the benefits were not worth the risks. For one thing, he was difficult enough to manage, and adding more weight to him would make him even harder to handle during a meltdown. Moreover, my mother’s instinct made me very leery about the issue of tardive dyskinesia and the potential permanent damage the drug could do in that respect. Therefore, I tore up the prescription one doctor gave us for risperidone and politely asked for a different medication from the other doctor, who understood my concerns and complied with my request.

When Alex was hospitalized for extreme anxiety and aggression, he was given one dose of risperidone, probably because it is the drug of choice in treating aggression in autism. However, one of the nurses told me that after just that one dose, he began to exhibit concerning side effects that appeared to be tardive dyskinesia, so they stopped the drug immediately. Thankfully, he was under the observation of trained medical professionals who recognized this serious side effect and knew that he should never take risperidone again. My mother’s instinct, which I believe is God guiding me, was correct about risperidone’s potential negative effect upon Alex, and fortunately, he did not suffer any obvious permanent damage from that single dose.

Certainly, medications can effectively treat symptoms associated with autism. For our family, the right medications have helped Alex tremendously and have significantly improved our lives as they have eased Alex’s anxiety and aggression. However, parents must do their own research on medications and never trust doctors and drug companies blindly. Doctors may not know all the side effects of psychiatric medications, and drug companies may omit crucial data to increase their profits. Moreover, more research needs to be done regarding developing medications that may better address negative behaviors in autism and have fewer serious side effects. As parents we must help our children cope effectively with a world that overwhelms them, and we must find methods that, indeed, follow the guiding principle: “First, do no harm.”

“Is there no medicine in Gilead? Is there no physician there? Why is there no healing for the wounds of my people?” Jeremiah 8:22

Sunday, August 23, 2015

Behavior as Communication in Autism

Last Sunday, Salon posted a fascinating online article about autism entitled “We have autism all wrong: The radical new approach we need to understand and treat it.” [To read this article, please click here.] Written by Dr. Barry Prizant, a speech and language pathologist who has extensive experience in working with people with autism, this article proposes that rather than stopping behaviors commonly found in autism, the reasons behind these behaviors should be addressed instead.

Dr. Prizant notes that autism is usually diagnosed based upon observation of various “autistic behaviors,” such as hand flapping, echolalia, and rocking, but no one bothers to ask why the child is engaging in these behaviors. As he points out, the logic becomes circular: “Why does Rachel flap her hands? Because she has autism. Why has she been diagnosed with autism? Because she flaps.” Similarly, I once asked Alex’s behavioral therapist why he, like other adults with autism I have observed, often holds his hands awkwardly bent at the wrist and close to his chest. She told me that it’s just a common behavior seen in adults with autism. I suspect that he does this because it makes him feel secure, a standing fetal position that instinctively puts his hands where he can protect his chest and head.

Additionally, Dr. Prizant states, “Instead of seeking to understand the child’s perspective and experience, they [caregivers] simply try to manage the behavior.” He further asserts, “This way of understanding and supporting people with autism is sorely lacking…It neglects the importance of listening, paying close attention to what the person is trying to tell us, whether through speech or patterns of behavior.” Or, as behavioral therapists tell parents of children with autism: behavior is communication.

Later in the article, Dr. Prizant goes on to explain that because of differences in their neurological systems, people with autism must deal with dysregulation challenges. He notes that people with autism “experience more feelings of discomfort, anxiety, and confusion than others” and “have more difficulty learning how to cope with these feelings and challenges.” These challenges occur because of communication issues and difficulties in dealing with change. Sensory and medical issues also contribute to the dysregulation problems people with autism face.

As Dr. Prizant notes, all people face stressful situations in life that make us feel dysregulated, but people with autism are more sensitive to these circumstances and often do not possess the skills needed to cope with these issues. For example, he describes children with autism who cover their ears and run screaming when they hear a loud noise, overwhelmed by the sensory overload. Other times, the reason behind the behavior may be less obvious, but he urges parents and therapists to try to find the motivation behind the child’s behavior. He states: “In most cases, the child can’t explain the behavior in words, so it’s up to those close to him to sort through the clues.”

With Alex, we have learned to help him express his emotions so that we can better help him cope. For example, his hands may shake for a variety of reasons. Consequently, we will ask him if he’s cold, nervous, excited, or just shaky. He has become very good at explaining the reason behind his trembling hands, and we can help him once we know the reason by getting him a blanket, reassuring him, sharing his joy, or reminding him that his medications just make his hands a little jittery at times. We have also discovered that when he grabs our arms, this is not an act of aggression, but a cry for help instead. He needs something but is so upset that he cannot express it verbally. Rather than addressing the behavior, we have learned to acknowledge that he’s upset and try to get to the bottom of whatever has caused him to reach out to us for help. Once we know the source of his upset, we can reassure him that we will help him cope.

Last week, one of my students who has autism approached me and suddenly moved her hand toward my head. Having seen Alex do similar motions, I took her hand gently in mine, moved it down into a friendly handshake, and told her that I was happy to see her. She smiled and told me that my necklace was pretty, which was probably the reason why she had impulsively moved her hand toward me; she wanted to touch my necklace because she liked it. Instead of reprimanding her for violating personal space, I was able to help make her behavior a socially acceptable one—a grab for an intriguing object that could have been perceived as threatening instead became a respectful handshake. My experience with Alex had taught me how to respond in a way that was understanding of her needs.

To conclude his article, Dr. Prizant explains, “Most of the behaviors commonly labeled ‘autistic behaviors’ aren’t actually deficits at all. They’re strategies the person uses to feel better regulated emotionally. In other words, in many cases they’re strengths.” Specifically, some behaviors not only signal that they are overwhelmed, but these actions also help to calm them by helping them gain control of the situation that feels out of control. Furthermore, he points out that all people have routines and methods to calm themselves in stressful situations, but children with autism may be discouraged from doing these behaviors, such as rocking or flapping. For example, I hum when I’m nervous, but I know that it’s not socially acceptable to do this in certain situations. Alex, on the other hand, will ask a question repeatedly when he is nervous, not caring how others perceive him. Rather than telling him to quit asking the question, we repeat his question so that he knows we have heard his concern, and we give him the opportunity to answer his own question. Realizing that he already knows the answer, Alex becomes reassured that everything is all right and stops repeating the question.

As an autism mom, I thoroughly appreciate Dr. Prizant’s insights into why people with autism behave the way they do. Because their nervous systems are especially sensitive to sensory issues and anxiety and because they often lack the verbal skills needed to express their feelings, they behave in untypical ways to communicate their emotions. Those who deal with people who have autism need to remember that they are doing the best they can to cope in a world that overwhelms them. Moreover, we need to figure out the reasons for their behavior so that we can help them cope and communicate their emotions. While we may not always understand their behavior, we certainly need to be understanding of them, showing compassion for their struggles and reassuring them that we truly care.

“Reflect on what I am saying, for the Lord will give you insight into all this.” II Timothy 2:7

Sunday, August 16, 2015

The Autism Epidemic

This week a provocative article regarding autism appeared online and has caused some controversy. In his article “Is There Really an ‘Autism Epidemic’?” writer Cody Fenwick challenges the assertion that autism is increasing at a staggering rate. Although he mentions the statistics usually cited to show that cases of autism have significantly increased in recent years, he proposes that autism is no more prevalent than it ever was. Instead, he believes that different criteria are being used to describe autism, and better diagnosis of autism along with more available resources have led to more people “experiencing ASD symptoms.”

To support his argument, he mentions research aligning with his belief that autism rates have not increased in recent years. Specifically, he cites a single study in Australia regarding the “global burden” of autism spectrum disorders that determined there was no change in American autism rates from 1990-2010 or around the world, for that matter. In reference to increased rates of autism diagnosis, he summarizes a California study that found higher rates of autism diagnosis in regions that offered diagnostic resources. This same study noted that children who moved to regions that offered better diagnostic resources had better chances of receiving a diagnosis of autism. Obviously, this makes sense: parents take their children to experts when they have symptoms that require evaluation and diagnosis. Moreover, some parents move their families closer to these autism experts so that their children can receive the best possible care. This scenario would seem to refute, rather than support, the author’s point that autism is not an epidemic.

In addition, he refers to “significant research”––but never cites the sources––regarding the increased diagnosis of autism. According to this nebulous body of study, the reason why the occurrence of autism seems to be increasing is because people have more access to mental health services, more incentives for having an autism diagnosis, and greater knowledge of autism. Fenwick asserts: “…high rates of ASD are due to more available resources, rather than an increase in people experiencing ASD symptoms.”

If Fenwick had talked to any autism parents, they could tell him that none of these reasons are true. Parents often wait months or even years to get services for their children with autism because there are simply not enough available resources, primarily because the number of children with autism has increased more rapidly than the availability of professionals who work with them. As for the “incentives” of having an autism diagnosis, this is simply ludicrous. Autism parents know that a diagnosis of autism often means discrimination and having to fight insurance companies to provide needed services. Moreover, if a greater knowledge of autism truly exists, there would be no need for autism awareness.

Another argument that Fenwick makes is that autism is simply a reclassification of the diagnosis of intellectual disability. He supports this position by noting that while the diagnosis of autism has increased (yet there is no autism epidemic, according to him), the diagnosis of intellectual disability has decreased. He suggests that many people who would have been labeled as having an intellectual disability are now classified as having autism, noting that the autism spectrum is diverse and has wide criteria for diagnosis. As anyone who studies statistics knows, “Correlation does not imply causation,” and the decline in those with intellectual disabilities has a more likely cause. According to recent statistics, an estimated 92% of pregnancies in which Down syndrome is diagnosed are terminated in abortion. Tragically, these children who would have been diagnosed as having intellectual disability are being eliminated from society before they can be born, and this is more likely the reason for fewer children receiving the intellectual disability diagnosis.

On the other end of the spectrum, he states that many people with high functioning autism probably went undiagnosed in the past. However, my more than thirty years of experience as a teacher tells me this is not true. Autism, even the high functioning version, is not something that could be ignored. The hallmarks of impaired language and social skills and behavior could not simply be swept under the rug. The reason more children are being diagnosed with autism is because autism rates are increasing; it’s that simple.

While Fenwick attempts to make his point that increased diagnosis of ASD does not mean more people have autism than before, he explains that the term “autism epidemic” should be avoided because classifying autism as a disease or plague is “hurtful and demeaning” to people with autism who view the condition as integral to their identity. Whether autism is a disorder, a disability, or a disease, it clearly impacts people’s lives in negative ways, impairing their language and social skills. The term “autism epidemic” is not intended to diminish those who have autism; instead, using this term may help bring attention to the difficulties they face on a daily basis.

Although the author concludes his argument that autism is not an epidemic by stating the “need to avoid making unwarranted claims to gain attention for our cause,” he never explains why he personally views autism as “our cause.” However, he also points out the need for better mental health services and research and even concedes that the current research on autism rates is “not decisive,” noting that there could be an actual increase in cases of ASD.

If, indeed, autism rates are increasing—and I believe they are, based upon my research and experience––attention is needed so that more research is done regarding how to help people with autism to allow them to get better support and services than are currently available. To quibble over the semantics of the term “epidemic” wastes more time that could be spent finding ways to help people with autism. For the record, however, I do believe there is an autism epidemic that if not addressed immediately will overwhelm our medical care, education system, and economic resources. With not enough support systems in place to handle this epidemic, those who need help will suffer. Our children with autism deserve much better.

“For He will rescue you from every trap and protect you from deadly disease.” Psalm 91:3

Sunday, August 9, 2015

Autism Mom Guilt Bingo

This week, my sister-in-law posted a funny graphic on Facebook about mom guilt. Entitled “Mom Guilt Bingo,” it first appeared about a year ago on the blog Sweet T Makes Three. What makes this bingo game so amusing is that it is so true: we moms frequently second guess ourselves when raising our children and feel bad about our mistakes. Of course, some of the items included in the Mom Guilt Bingo are tongue-in-cheek, such as “High Fructose Corn Syrup in the House” and “Birthday Party Wasn’t Pinterest Worthy.” However, others squarely address those issues where we feel we’re not doing enough as our children’s mothers.

This week, I felt my own pangs of mom guilt as I eagerly prepared to start teaching another school year later this month. As I bought school supplies, revised syllabi for my classes, photocopied handouts, and decorated my classroom in anticipation of a new group of students, I felt that yearly pang of guilt about actually enjoying a job that takes me away from Alex every weekday morning. Mind you, he’s twenty-three years old, supervised by his beloved father while I’m away, and sleeping some of the time I’m at work, but I still worry that somehow my absence is detrimental to him.

While probably all mothers feel guilt from time to time, autism moms feel guilt that typical moms do not. We wonder whether we have done something wrong to cause our children’s autism—probably going back to the now debunked and completely ridiculous “refrigerator mother” theory that our supposed coldness impaired our children’s social skills. Moreover, we worry whether we are doing enough to make our children better. With those perceived shortcomings in mind, I offer my version of Autism Mom Guilt Bingo.

B is for Borrowed—Here are the squares I borrowed from the original Mom Guilt Bingo that also apply to autism moms:


Incomplete Baby Book

Work Outside the Home

Hiding in the Bathroom

Used TV as a Babysitter

I is for Imagined causes of child’s autism—what we may have done during their early development, according to “research”:

Got sick during third trimester

Wore nail polish while pregnant

Passed along autoimmune tendencies

Too many ultrasounds during pregnancy


N is for Need to do this to keep child happy and mom sane:

Allowed child to rewind Disney videos over and over

Put child in GoodNights in the daytime when too big for diapers and pull-ups

Told child white lies

Let child slam doors and turn on and off lights in nightly routine

Engaged in routine of saying “Bye-bye” repeatedly during credits of television shows

G is for Gosh, I’m not proud of this:

Wanted to poke out eyes of people who stare at my kid

Jealous of parents who have typical kids

Made Rain Man jokes

Considered making T shirts that read: “I’m Autistic, What’s Your Excuse?”

Blamed, begged, and bargained with God

O is for Overloaded with toxins unknowingly:

Cooked in aluminum and nonstick pans

Built deck with (arsenic) treated lumber

Followed (thimerosal-containing) vaccine schedule faithfully

Gave Tylenol after shots

Child chewed on his flame-retardant pajamas

No one said that motherhood would be an easy job, and autism adds a whole new dimension of struggles to raising a child. Being human, we moms make mistakes, often unintentionally, and we pray that our shortcomings will not harm our children. Thankfully, we can rely upon God’s forgiveness when we fall short, and our kids are more resilient than we think they are. I’m especially blessed that Alex never holds a grudge; when I tell him I’m sorry, he readily accepts my apology and moves forward. (Occasionally when he’s OCD, he will remind me, “Mommy made a mistake in 1996,” but usually he doesn’t hold too much against me.) Without a doubt, I am the one who holds me accountable for my mistakes, and guilt ensues. However, I need to remember that if God and Alex can forgive me, then I need to forgive myself and let go of the guilt. Oh, and one of these days, I will finish Alex’s baby book, maybe someday after I retire from my job.

“You forgave the guilt of Your people––yes, You covered all their sins.” Psalm 85:2

Sunday, August 2, 2015

Request List

Because Alex has made significant progress in the past several months, Ed and I asked him two months ago to make a list of the things he’d like to do over the summer, confident that he would be able to behave himself well enough to do these requested activities. Knowing Alex as well as we do, we were also certain that his list would be reasonable and, therefore, manageable. Basically, he made the following list:

1. Go to different restaurants.
2. Go to the county fair.
3. Go to concerts in the park.
4. Go to the farmers’ market.
5. Go to Zao Island (a local family arcade and miniature golf course).
6. Go to Dairy Queen.
7. Go to the movies.
8. Play in the sprinkler.

With two weeks left before Ed and I return to our teaching jobs, marking the end of our summer, we have been able to fulfill all of the requests on Alex’s list. This summer, he has enjoyed dining at Round the Clock family restaurant (in Valparaiso and Chesterton), Culver’s hamburger place with gluten-free buns, Panera Bread for salads (inside and out on their patio), Fazoli’s Italian restaurant, Schoop’s fifties-style diner (breakfast and dinner), Suzy’s CafĂ©, The Port fifties-style drive-in, Tao Chen’s Chinese restaurant, Bob Evans family restaurant, and Kelsey’s Steak House. Despite the limitations of his gluten-free and dairy-free diet, we have found items on the menu that he can eat, and he happily devours whatever is put in front of him. Most importantly, he demonstrates that he has learned the manners we have been teaching him, thanking the people who wait on him and being pleasant and patient.

On Monday evening, a perfect summer night with comfortable temperatures, we took him to our county fair, something he looks forward to visiting every year. Along with visiting the horse and cattle barns, we looked at the 4-H exhibits, enjoyed an excellent concert by country musician John Berry, and walked around the carnival midway. Whenever we go places, Alex wants to know what there will be to eat and drink, but most food fare at the fair doesn’t fit within his dietary limitations. However, he did enjoy a root beer float minus the float and strawberry lemonade. Also, he wanted to continue his annual fair tradition by playing the duck pond game, where he chose a red sock monkey stuffed animal, whom he named Alan (after his favorite country singer Alan Jackson) for his prize. Although he told us he had “tired feet,” by the end of the evening, he rated his visit to the fair “one hundred percent.”

On Thursday evening, we took him to a concert in our downtown park, the last one of the summer series, where we had already seen the local community band, a country band, and a rhythm and blues group. The last concert was a pop group who were not Ed’s taste in music, but Alex and I found them entertaining. Of course, Alex also liked having something to eat and drink as he bobbed his head to the music.

This summer, we also took him to the Saturday farmers’ market here in town and the European Market in nearby Chesterton. Even though these were on his request list, Alex seemed more interested in walking as fast as he could past the displays instead of actually shopping. In fact, he reminded me of Chevy Chase’s character Clark Griswold in the movie Vacation at the Grand Canyon, nodding his head and moving along, just to be done. Consequently, we bought nothing, but we could at least check off another item on Alex’s list.

Also, we took him to Zao Island, but the miniature golf course was extremely crowded. Even though Alex is much more patient than he used to be, we felt that the wait would be too much for all of us. Perhaps we will try again before summer is over; I always enjoy Ed telling Alex repeatedly to look at the golf ball because Alex is looking everywhere but at the ball. Nonetheless, Alex enjoyed playing the Wheel of Fortune video game and the NASCAR simulation racing game, where he drives Dale Earnhart Junior’s car but drives recklessly, running into walls and other cars, making us glad that he does not have a driver’s license. Even though his favorite video game, Deal or No Deal, was broken, he still smiled the entire time. I think we definitely need to return to Zao Island for a round of miniature golf and a try at Deal or No Deal before summer ends.

For years we used evening trips to Dairy Queen as a reward for good behavior in the summertime. Even though Alex’s diet limits his options on the Dairy Queen menu, he likes their Arctic Rush slushes and typically keeps a mental list in which he rotates the flavors he likes: cherry, lemon-lime, and strawberry-kiwi. Although blue raspberry is another option, he never chooses it because he doesn’t like the “blue lips and blue tongue” that is inevitable after drinking one. This summer, Alex has strayed from his usual slushes, choosing instead to have their gluten-free french fries with root beer to drink. Even though we no longer have to bribe him with trips to Dairy Queen, he still enjoys frequent visits there for a snack or dessert.

Because going to the movies can be overwhelming with the big screen, loud volume, and crowds, we have avoided taking Alex to the movie theater for fear he would have sensory overload. In fact, the last time we took him to the movies was before we knew had had autism; we went to see Toy Story when he was three years old. Although he was fine then, we never took him to movies again for fear that he might get upset. Moreover, he never really seemed very interested in anything that had a plot. Recently, though, he has shown greater patience and enjoyment in following the plot of television shows and movies on t.v., so we thought we’d give this another try. When he asked to go to the movies, specifically to see the new Pixar movie Inside Out, which he’d seen advertised on television, we thought this was the perfect time to take him. Once again, he showed how much progress he’s made, sitting calmly and enjoying the movie, never complaining about how long he had to wait or asking when he could go home.

His patience also paid off as he waited for the final item on his list request list to be fulfilled. After rainy and unseasonably cool weather this summer delayed his sprinkler runs, he finally was able to enjoy sprinkler time during some hot days in the past two weeks. Even though most young men his age would not think hanging out in the backyard sprinkler was something cool to do, Alex sees this as a fun summertime activity that he’s anticipated every year. As we watch him enjoy that simple pleasure, we are reminded that even though he’s come so far, he’s still basically a little boy at heart.

As summer comes to an end, I think all three of us can easily say that this has been our best summer ever. Alex has been able to do all the things he wanted to do, and Ed and I have been thankful and happy to watch his delight as he engaged in these common activities that brought him such joy. God has truly blessed us, and we are grateful.

“Listen to my voice in the morning, Lord. Each morning I bring my requests to You and wait expectantly.” Psalm 5:3