Meltdowns Vs. Shutdowns

 

Although many people are aware of meltdowns in autism, the concept of shutdowns in autism may be less known. In a meltdown situation, the child with autism experiences sensory overload and may become emotionally distraught. While this behavior may look like a temper tantrum, the child is not trying to exert control and get his or her way; the child is out of control and feeling overwhelmed. Similarly, in a shutdown, the person with autism is in a stressful situation and responds with behavior that may be misinterpreted. While some may think the child is simply avoiding an unpleasant or difficult task, the shutdown behavior is actually a physical response to certain triggers.

Until yesterday, when I read a fascinating online article entitled “Shutdowns and Stress in Autism,” I was not aware of this behavior commonly found in adults and children with high functioning autism. However, after reading this study by Ingrid M. Loos Miller and Hendricus G. Loos, I realized that Alex exhibits shutdown behaviors at times. [To read this article, please click here. Thanks to the Facebook page “Regarding Caroline” for sharing this article.]

Describing a case study of a young girl with autism who was exhibiting shutdown behaviors at school, the authors note that her behaviors followed a predictable pattern triggered by social stress when she was expected to perform difficult tasks. She would first look away, then rub her eyes, keep her eyes closed, and then become limp, and finally would fall asleep for ten minutes to two hours. The article also lists more than thirty behaviors in Appendix 3 associated with shutdowns, including staring, yawning, asking to rest, and refusing to comply with verbal requests, all of which I have seen Alex do sometimes when he had to do something he found difficult.

The authors note that settings for these shutdown behaviors include school, play dates, meeting strangers, and conversations with adults that asked the child to recall recent events and to describe what happened and what the child liked. Specifically, the authors observe, “…the most stressful events are those in which the child is expected to ‘perform’ using language.” While these stressful situations may cause shutdown behaviors, the authors note that “stress instability” may also cause meltdowns, such as sensory overload or aggressive outbursts.

Because of the difficulties with eye contact, social skills, and language, children with autism may have social phobia, the authors suggest. When an adult pressures a child with autism to respond verbally to a difficult question, the child exhibits an abnormal physical response to stress. As the stress hormones rise, the child shuts down, allowing the body to recover. As the authors explain, sustained high levels of stress hormones can damage the brain, impairing verbal memory, social function, and sensory processing, and causing language deficits. In addition, rhythmic motion, such as rocking, may be needed for calming. All of these issues are associated with autism, perhaps because stress hormones have impacted the brain negatively.

While children with autism are often encouraged to work through their stress, this method is not helpful, according to the authors. These children often remember other stressful events in their lives, and a vicious cycle occurs. Instead, the authors recommend low stress approaches. For example, adults may need to be more flexible in dealing with a child who is experiencing stress. To help control social pressures, adults should help the child focus on the positive, give the child more time to respond, and allow the child to work alone. Social stories may also be effective in dealing with stress. The child may also need to take breaks to stretch, to take deep breaths, or to rest. In addition, breaking down tasks into smaller parts may be easier and less stressful for the child.

In Appendix 2 of the article, the authors have collected information from adults with autism regarding shutdown behavior. For instance, these adults describe feelings associated with a shutdown: “suddenly very sleepy,” “confused,” “like a panic attack,” and other similar details expressing their physical reactions to overwhelming stress. Further, they note that being told to “get over it” or having to continue in the stressful situation makes it worse. Instead, they need quiet time alone to relax––anywhere from a few minutes to over an hour, depending on the severity of the stress.

Perhaps the most critical point the authors make in this article hinges on what a person with autism needs to cope with stress. First, the person must recognize the signs of stress, such as suddenly feeling fatigued. Next, the person must learn strategies to help reduce stress, including taking a break and being alone. This ability to “self-manage,” the authors assert, is a “pivotal skill” needed in life.

What I found most interesting in this article is gaining understanding why Alex sometimes suddenly becomes very tired during conversations. Clearly, he is in shutdown mode. The strategies his therapists have taught him for coping with anxiety mirror those suggested in this article. As he has matured, he often prefers to be alone to deal with stress, and with an opportunity to go to another room and be quiet, he quickly recovers and can rejoin the conversation.

Hopefully, this information regarding shutdown behaviors will become more widely known to parents, therapists, and teachers who work with children and adults who have autism. By understanding situations that trigger shutdowns, the physical reactions, and ways to help people with autism cope with stress, those who work with and care about children and adults with autism can teach them tools to deal with things that overwhelm them, allowing them to manage stress and to experience life to the fullest.

“Joyful is the person who finds wisdom, the one who gains understanding.” Proverbs 3:13

Managing Meltdowns

 

“You don’t want to use the typewriter ever again because you make too many mistakes!”  When Alex utters that line (with the typical pronoun reversal in which actually he means himself when he says "you"), we know that he has reached his limit. For some reason, frustration has been simmering for a while, and he lets us know by saying something that seems nonsensical in a voice much louder than his usual barely audible speaking voice. As though the National Weather Service has issued a severe weather alert, we spring into action, preparing to face the storm, in this case, a full-blown meltdown.

Most autism parents would say that dealing with their children’s meltdowns is one of the most upsetting, difficult, and perplexing issues of life with autism. Often these meltdowns occur in public due to sensory overload, and onlookers may mistakenly perceive the behavior as a bratty child whose incompetent parents allow him/her to throw temper tantrums. However, meltdowns are not intended to get attention or to get one’s way; meltdowns occur when the world is too much and the child simply can no longer cope.

Recently, I read a fantastic blog entry entitled “What a Meltdown Feels Like for Someone with Autism," written by autism mom Emma Dalmayne, who is also an adult on the autism spectrum. [To read this essay, please click here.] In this article, she explains what can trigger a meltdown and offers helpful suggestions of what to do and what not to do to help someone who is having a meltdown. I only wish that I had known this information when Alex was younger because I could have known better how to help him when he and I both felt quite helpless.

In explaining meltdowns, Emma Dalmayne describes the overwhelming emotions as, “Everything is too much…” and states, “Irrepressible anger that may seem completely irrational to an outsider can be inwardly devastating us internally.” She also notes that a meltdown may seem to be a reaction to something rather trivial, but this trigger may actually be “the last straw on the camel’s back.” She adds that the meltdown results from “a build-up of things, and frustration will be the reason.” To prevent a full-blown meltdown, she recommends being aware of the early signs of meltdown, such as pacing and verbal aggression. With Alex, when he starts muttering about typewriters, not remembering certain years, gas prices being too high, and/or making mistakes, we know that his anxiety is escalating. When we have been able to trace back with Alex the source of his meltdowns, we have realized that an accumulation of frustrations led him to yell at us about typewriters and mistakes.

After describing the emotions behind meltdowns, she admonishes parents not to try to reason with the child. Specifically, she says not to say that everything is okay because that is “trivializing our distress and it will make us worse.” Also, she explains that saying, “Stop” may increase anxiety rather than help the situation “because we would if we could; no one wants to feel this way.” When Alex has had meltdowns, I know I have been guilty of trying to reassure him by telling him everything would be all right and by telling him to stop because I was afraid he would hurt himself or someone else. How I wish I had known the right things to say to him that would have made him feel more secure instead of more frantic! We could have defused many meltdowns, had we known this wisdom.

Along with telling what not to do during a meltdown, Emma Dalmayne offers good suggestions for ways to help people with autism when they have meltdowns. To address sensory overload, she recommends a chewy or washcloth to bite on or a weighted blanket. For safety, she suggests a crash mat and a safety helmet. Also, she warns that while some children will fight in this fight or flight mode, others will flee and need to be taken somewhere safe. However, she recommends that restraint only be used as a last resort because “a touch can feel like an electric shock” which may increase the intensity of the meltdown. As children grow, these suggestions become even more important because their increasing size and strength can make them a greater danger to themselves and others.

In addition to these excellent tips, we have learned from experience and from his behavioral therapist techniques to help Alex calm himself. For example, we know that addressing his upset with negative responses can be like pouring gasoline on a low fire. Instead of asking him, “What’s wrong?” we need to reassure him that we will help him deal with whatever is upsetting him. “Can I help you?” is a better question for him because he knows he is not dealing with the problem alone. Sometimes I will assure him that I will help him fix whatever he’s worried about, and that eases his mind. Other times, I will help him take control of the situation by offering suggestions and choices when he seems too panicked to know what his options are. If he cannot make a decision, we will discuss the pros and cons of each choice, which seems to calm him. In addition, he sometimes needs his beloved numerical tools to settle down, so I will offer him a timer or watch to help him be more patient about waiting. Often, he likes to dictate a list for me to write, and then reading the list several times seems to soothe his anxiety, perhaps because he is more comfortable with written words than spoken words.

Behavioral therapy has proven especially valuable to us in that Alex has learned various routines to calm himself when he is upset. His therapist has worked with him to learn coping skills, such as counting and taking deep breaths to combat anxiety. As we go through these calming techniques, I can make suggestions, but I must let him decide what he needs to feel better. For instance, if he doesn’t want to count, I respect that and allow him to choose the technique he thinks works best at the time. He has also learned how to verbalize his feelings to explain why he is frustrated instead of resorting to nonverbal expressions, such as throwing things or hitting. Over time, he has learned that when we ask him what he is really upset about, we are helping him get to the root of the problem in order to fix it. Not only does Alex know that he can count on us when he is overwhelmed, but also he has discovered that he can take control of his emotions and the situation so that he can fix the problem himself.

While managing meltdowns can be one of the most difficult behaviors to address in autism, learning calming techniques can prove very helpful. In addition, those witnessing the meltdown must recognize that the upset––no matter how irrational it seems––is very real. As Emma Dalmayne points out, “Please don’t punish or berate your child for how they have reacted, as it’s not willful or even conscious.” By understanding the triggers behind the meltdowns, offering support, and assisting with coping skills, parents can help their children deal with overwhelming emotions and keep everyone calm and safe.

“May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.” Romans 15:13

Challenges

This week has been a challenging one for us. Alex is still in the hospital as we wait for news of a residential placement for him. Although he had been doing well during this third hospitalization, this week he began having meltdowns, which reminded us why he needs to be there, where they have resources to help him, instead of at home. On Tuesday morning, the hospital called to tell us that he had awakened agitated and aggressive, so they needed to give him a sedative shot to calm him. Later in the day, he became edgy again, and they recommended that we forgo our daily visit, thinking that might stir him up again.

The next morning, they called early in the morning to tell us that he had again awakened upset and needing a shot to sedate him. Since we didn’t hear from the hospital in the afternoon, we assumed that he had been all right after that. Once we arrived at the hospital in the evening, they apologetically told us that someone should have called and told us not to come. A later meltdown had become so aggressive that they needed to put him in four-point restraints for a while so that he couldn’t hurt anyone or himself. In addition, they had to give him a combination sedative of Ativan, Haldol, and Benadryl to ease his anxiety. Also, a staff member stayed with him constantly, monitoring his behavior.

On Thursday, he continued his morning meltdown pattern and again needed medication to calm him. However, the nurse on duty that evening felt that we could come visit him because he had been fairly calm most of the day. In fact, earlier in the day, he had been able to express his frustrations verbally to his caseworker, telling her he needed crayons “to communicate” and that he didn’t like his “food choices,” requesting “more fruit,” specifically “grapes and strawberries.” When we went to visit him, he was so drowsy from the medication that he fell sound asleep shortly after we arrived. At least we were able to see him calm, which was reassuring.

Friday morning brought yet another meltdown and more medication. When we went to see him, he was resting in bed, awake yet drowsy. As Ed tried talking to him, Alex became more agitated and swatted at him a couple of times. Not wanting to make him upset, we cut our visit short and just let him rest, hoping for the next day would be better.

Yesterday, we had not heard from the hospital, so we were praying that no news was good news. Unfortunately, when we arrived, a nurse rather bluntly informed us that he had yet another morning meltdown in which security had been called when he went after a staff member, and he had been given a sedative shot. Fortunately, no one had been hurt, and the staff member who had received his wrath assured me that she was all right. Moreover, the compassion and kindness she showed for Alex eased the feelings of upset we felt for what had happened. Once again, Alex was drowsy from the sedatives, and after Ed talked with him for a while, he became agitated, swatting at him. For fear of upsetting him more, we decided to leave.  We watched outside his door, as he settled down and seemed to be falling asleep.

While these daily meltdowns are heartbreaking because we hate that Alex is so agitated, we’re thankful that he’s at the hospital where they are able to handle his behavior better than we are at home. Although we have no idea what is causing him to be anxious on a regular basis, we have seen this pattern at home where he is calm for several days followed by being regularly upset for several days. His caseworker thinks that he is tired of being at the hospital and wants to come home, but having seen him display the same behaviors at home, Ed and I tend to disagree with this reasoning. Also, these behaviors are precisely and sadly the reason why he can’t come home; his aggression is too dangerous for Ed and me to handle by ourselves.

Throughout the trials of this week, we have been blessed by the support of family and friends who have expressed their concerns and support. We are thankful for the kind words, notes, and e-mails we have received, and we appreciate all the prayers being said for our family. After being Alex’s only caretakers for more than twenty years, Ed and I have had to realize that we need help in providing for his needs, and right now all we can really do for Alex is to love him unconditionally—as we always have—and pray for him, which we have done throughout his life but now with an increased fervor during this period that requires greater faith than ever.  We face an uncertain future, not knowing where and when Alex will be placed and hoping that these meltdowns will cease so that he can get better. As we face our fears with faith, we take comfort in knowing that God loves Alex even more than we do and holds all three of us in the palm of His hand. Nonetheless, I ask for your prayers which lift us and sustain us as we wait to see the hope and future promised in Jeremiah 29:11.

“Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen and help you. I will hold you up with my victorious right hand.” Isaiah 41:10

Emergency

Exactly twenty years to the day that we brought Alex home from the hospital as a newborn, we were taking him to the same hospital’s emergency room. While we could feel blessed that he had never been back to the hospital in all those years and had escaped the typical injuries that send most children to the ER at least once, we were terribly upset by the reason we were taking him that December evening. Our twenty-year-old son with autism needed a psychological evaluation after weeks of anxiety had led to an unusually bad meltdown that evening. Following the directions of our local mental health facility, we had been instructed to call the police and then take him to the emergency room, where they would send someone to evaluate him.

Despite our best efforts to calm Alex that evening, he continued to spiral in his agitation and fought Ed mightily as he tried to restrain him so that he couldn’t hurt himself or us. Moreover, he refused to take Ativan, the sedative that usually calms him when he’s upset. After struggling with him for a while and realizing that we needed help, Ed told me to call the police, who arrived within minutes. The first officer calmly but firmly just talked to Alex, who was surprised to have a stranger in our home telling him what to do. However, the officer also told me that he didn’t understand why the mental health facility had told us to call them because his superior officer said he couldn’t do anything. A second officer arrived and offered to escort us to the hospital if we needed him, but the first officer insisted that they were supposed to leave. Thankfully, Alex had calmed down by this point so that we felt we could drive him to the ER ourselves instead of having an ambulance take him. In addition to calling the police, I had called my parents, who immediately came to offer support, and they went with us to the ER to help in any way they could.

Once we arrived at the ER, we had to wait for a long time before a doctor saw Alex. Despite having to wait, he remained calm for a while, but then he became agitated again, and security officers had to help us restrain him. A nurse gave him an injection of Ativan at my direction, and he settled down fairly quickly. The two hospital security guards handled Alex with compassion, and they stayed with us the entire evening, showing us empathy and kindness. One of them explained to me that he has an adult son with mental illness, and the other man told me that he has two grandchildren who have autism that he and his wife are raising, so they understood our situation. I will never forget the compassion they showed us in the middle of a horribly upsetting time. The ER doctor had little to offer other than prescriptions for Ativan capsules and injectable Ativan for emergencies. When the social worker from the mental health facility arrived, she basically told us that unless Alex was homicidal, suicidal, or psychotic, they couldn’t do anything for him until he saw one of their psychiatrists, which we already knew was a six to eight week wait to get an appointment. With that, and with Alex calm and tired from being in the ER for more than five hours, we took him home.

As we had been told to do in the ER, we followed up with our family doctor, and I explained to him over the phone what had transpired. He had concerns about giving Alex Ativan in the dosage the ER doctor had recommended because, as I already knew, it is addictive and loses its effectiveness over time if given too often. Instead, he suggested that we give Ativan only as needed for agitation, increase Alex’s Prozac dosage to help the OCD behavior that seems to trigger his meltdowns, and add the prescription drug Abilify to help the Prozac work more efficiently to calm his anxiety. When we went to refill the Abilify the following month, our insurance denied coverage, and the cost of the medication for one month without insurance is more than $730 per month. (Yes, that’s no typo; Abilify costs more than $700 for thirty tablets!) Thankfully, our doctor’s nurse appealed the insurance company’s policy, and they agreed to pay for the medication. Now, we’ll have to see how long they will continue to pay for this expensive medicine. While these changes have seemed to help Alex’s behavior, the improvements have been gradual, and he still has anxiety issues at times. We would like to see quicker progress and the elimination of his meltdowns, so we keep praying for him to recover from whatever causes his agitation and anxiety.

Earlier this month, a fifteen-year-old boy with autism was shot and killed by police in Calumet City, Illinois, which is about an hour away from us. His parents had been told by a social worker to call the police if they needed help dealing with his outbursts. Armed with a knife, he attacked the police, who shot in “self defense.” As more of these children with autism become young adults, something must be done to address their behavioral issues that make them a danger to themselves and others. Police officers need to be trained to handle people with autism, doctors need to know how to treat the various medical issues that accompany autism, and the mental health system needs to offer immediate help to families dealing with behaviors that cannot be ignored. When children with autism are little, so much time and energy is spent improving their speech, eye contact, and social behavior. Once they reach adulthood, a whole new set of behavioral problems can arise that make the earlier challenges seem so simple. Continuing to ignore the increasing number of children with autism who are becoming adults will not only hinder those parents trying desperately to get help for their children but will also create dangers for these adults with autism and those who interact with them. My son and all others with autism deserve a lot better than that. Pray for us as we keep searching for answers.

“Listen closely to my prayer, O Lord; hear my urgent cry.” Psalm 86:6

Retail Therapy

On Thursday, the media gleefully reported that First Lady Michelle Obama had been photographed shopping at a Target store in Virginia. Since Alex and I had been shopping at another discount store, our local Kmart, the day before, I thought a comparison and contrast of their shopping adventures might be interesting.

Mrs. Obama was photographed wearing a baseball cap and sunglasses in an attempt to shop incognito. Alex, too, often wears a baseball cap and sunglasses in public places; however, he needs them to deal with the glare of fluorescent lighting in discount stores.

Mrs. Obama pushed her own shopping cart; Alex also pushes his own shopping cart.

Mrs. Obama shopped with an assistant and a Secret Service agent. Alex shops with Ed and/or me, his personal assistants who know how to run security detail, should he become agitated.

Mrs. Obama reportedly bought dog food and toys for First Dog Bo. Although we’ve never owned a dog, Alex enjoys going down the dog food aisle and seeing the big bags (40 or 50 pounds) of dog food, so he would have enjoyed shopping with Mrs. Obama. However, this week Alex shopped for athletic socks. Apparently, socks sounded like “sucks,” which led him to muttering and complaining, which led me to put down the socks and lead him out of Kmart before a meltdown erupted.

Mrs. Obama supposedly was not recognized by anyone in the store except for the clerk in the checkout lane. Alex moved through Kmart unnoticed, thanks to my quick response, until he decided to push the buttons angrily on the credit card reader at the customer service desk on his way out the door.

On Mrs. Obama’s way out of Target, customers probably noticed that she was having her picture taken by newspaper photographers. On Alex’s way out of Kmart, customers probably heard the beeping caused by his pushing buttons on the credit card reader and may have noticed my grabbing his arm as we hurried out the door. Fortunately, no photographers were available to record his annoyance or mine.

After all the attention Mrs. Obama received for her Target shopping trip, she may have to limit her visits to area discount stores. After his griping during our last Kmart shopping trip, Alex may find that I’m not terribly eager to take him shopping there again, at least not by myself. Maybe the next time we’ll take along our personal assistant/security detail, Ed. If he’s not available, maybe Mrs. Obama’s Secret Service agent would be willing to tag along with us since he’s a seasoned discount shopper.

I’m just thankful that Alex decided to voice his displeasure at Kmart, which is my least favorite of the “big box stores.” If we were banned from Kmart, that would be no big deal. However, not being able to shop at his favorite store, Wal-Mart, or my favorite, Target--now that would be a loss. In the meantime, we keep praying that we can target (no pun intended) whatever may be causing these irritations in Alex and hope that they disappear rapidly so that we can all enjoy retail therapy in peace.

“But the others replied, ‘We don’t have enough for all of us. Go to a shop and buy some for yourselves.’” Matthew 25:9

Alphabetical Reminders

After a challenging few days with Alex, who has had several verbal meltdowns this week, I have been introspective about what sets off this behavior in him. On Monday, I spent about an hour talking him down from his upset over the game Monopoly Junior, which annoys him because it is a low-scoring game. Despite my best attempts to remind him gently hat he hasn’t played the game in years and that he never has to play it again, he wanted to obsess over how boring the game is. [What’s more boring than Monopoly Junior? Listening to a teenager with autism talking about it endlessly!] As I calmly reassured him, he would settle down, only to arise again in frustration repeatedly, as though we were living our version of the movie Groundhog Day. When I’m in situations like that, I always half-jokingly wonder if I’m on Candid Camera and that someone is getting a real laugh out of watching me reason on a topic that is simply unreasonable. Despite two more rounds of Monopoly Junior mania, we all survived the day, ready for the next arrival of verbal sparring.

Once a meltdown has subsided, I always go into scientist mode, analyzing what might have aggravated Alex. Was it something he ate? Do his supplements or medications need tweaking? Is he not feeling well? Did I say something to annoy him? Is the pollen count high? Is there a change in air pressure? Most of the time, we have no definitive answers about what upsets Alex, but through experience over the years, we have become pretty adept at handling him when he is agitated. If any good can come of these recent meltdowns, perhaps I can share our first-hand experience in hopes that parents, teachers, or others who deal with children with autism can benefit from what we’ve learned. Since I like to organize information in a way that is easy to remember, I’ve decided to share my top ten autism meltdown management tips using alphabetical clues.

A-ANXIETY: I’m convinced that meltdowns are anxiety attacks in which the child reverts to fight-or-flight behavior. Alex takes the fight route, primarily in the form of verbal aggression, but he can be physically aggressive, as well. The shaking of his hands indicates excess adrenaline to me, and since I have often dealt with the flight form in my own anxiety attacks, I know that the anxiety can be overwhelming.

B-BEHAVIOR: The child is not deliberately being bad or defiant; he/she truly can’t help his/her actions. Therefore, punishment is not appropriate. Alleviating the source of the anxiety should be the only objective for the adult who is caring for the child.

C-CALM: The more upset the child is, the more important it is for the adult to remain calm. When the child is yelling or physically attacking, keeping one’s composure is not easy. However, the adult must not add to the child’s anxiety by yelling back.

D-DON’T ARGUE: No matter what ridiculous things the child says, do not try to convince him/her of how wrong those words are. In fact, it’s best to say as little as possible and allow the child to relieve stress by verbalizing any concerns. If the adult must talk, only help and positive comments should be offered.

E-ELIMINATE: If possible, eliminate any triggers that are upsetting the child. For example, if the child is mad about a puzzle he/she can’t solve, remove it from his/her sight until the storm has passed. If the child is bothered by sensory issues, such as the humming of an air vent or the noise of a computer printer, move him/her away from these distractions.

F-FRUSTRATION: Frustration often leads to anxiety, which leads to meltdowns. If the child seems overwhelmed, give him/her a break or encouragement. Sometimes perfectionism will make the child be too hard on himself/herself; other times pushing the child too hard can be overwhelming. Watch for signs that the child is being pushed too hard, either from internal or external sources.

G-GIVE SPACE: If the child is upset, don’t stand over him/her, which may cause more agitation. Also, for one’s own safety, keep out of striking or kicking range.

H-HANDS OFF: Once the child is in meltdown mode, do not touch or restrain the child unless for safety reasons because touch can escalate the anxiety. Children who are sensory defensive often become upset, rather than calmed by being touched.

I-ISOLATE: If the meltdown is happening in a public place, such as a classroom or a store, try to get the child away from other people by taking him/her out of the crowded place. The confusion of having people around only makes matters worse, and the child doesn’t need any extra witnesses to the meltdown.

J-JUST BREATHE: As upsetting as watching a child having meltdowns can be, the good news is that they rarely last that long. Remaining calm will help the child regain composure, and the anxiety will pass.

Hopefully, these suggestions can help others dealing with autism meltdowns. As we wait for Alex to get over his irritation regarding Monopoly Junior and hope that he doesn’t come up with a new source of annoyance, I pray for patience for Ed and me and peace for Alex so that we no longer need to use these tactics to calm him.

“For the Lord your God is living among you. He is a mighty savior. He will take delight in you with gladness. With His love, He will calm all your fears. He will rejoice over you with joyful songs.” Zephaniah 3:17

Pointers

With students all over the country going back to school, stories have arisen in the media lately about special needs children being punished for their outbursts by being excluded from educational services the law demands they be provided. In Texas, a six-year-old special needs student was kicked off a school bus and left near a busy intersection. Details of what happened remain unclear, as he apparently can’t explain what led to a bus driver placing him in a potentially dangerous situation. In Florida, a six-year-old girl with autism and attention deficit hyperactivity disorder was expelled on the first day of school from a charter school specifically designed to meet the needs to children with behavioral issues; allegedly she screamed, bit, and hit the teacher. These stories, as well as those told by my friends whose children with autism have been suspended from school because of their behavior, make me thankful that we were able to homeschool Alex throughout his school years. We could address any concerns at home without the interference of school personnel, who should be equipped to handle behavioral issues of special needs children.

Unfortunately, many people working with children who have autism are not well trained in dealing with outbursts. Instead of recognizing behaviors as likely resulting from anxiety, they may handle the child as simply being defiant or uncooperative, restraining the child and/or punishing with exclusion or suspension from school. As the number of children with autism increases due to the autism epidemic, poor training of personnel who work with these children is no longer an option. Several years ago, the special education department at the school where I teach seventh grade English on a part-time basis brought in a supervisor to give an in-service meeting regarding how to handle children with autism. When he began his talk mentioning “refrigerator mothers” (which he admitted was a theory that had been refuted), I knew he was not the person to be teaching others about autism. As he talked, my colleague friends kept watching for my reaction to what he said. Since I don’t have a good poker face, I’m sure my disagreement with some of his comments was evident. Realizing that he noticed my fellow teachers gauging my facial expressions in response to his remarks, I explained to him that I have a son with autism and that my friends were trying to see if I agreed with the information he was presenting. Undaunted, he went on with his talk that was mostly factually accurate but actually offered little insight in terms of how to work with children with autism. I doubt he really knew; I wouldn’t have known, had it not been for living with Alex and learning to handle his outbursts over time. Perhaps if more school personnel learned how to deal better with autism meltdowns, fewer children would be suspended or expelled from school.

Over the summer, I became fascinated with a television show on National Geographic Channel called Dog Whisperer in which dog trainer, or whisperer, Cesar Millan works with badly behaved dogs that exhibit aggressive or anxious behaviors. I found his insights into dog psychology interesting as he explained why certain dogs acted as they did. In retraining the dogs, he had three rules for the humans when first interacting with the dogs: “No touching, no talking, no eye contact.” After thinking about those rules, I realized that they would also apply when dealing with children who are having meltdowns. Mind you, comparing an upset child with autism to a badly behaved dog may seem harsh, but I suspect both are engaged in the “fight or flight” instincts when they are highly agitated. With Alex, we found that touching him during a meltdown, whether to restrain him gently or to try calming him with a touch, can make him more agitated and aggressive. Hence, the “No touching” rule is a good start. For a child with extreme tactile sensitivity, even a gentle touch may be perceived as a threat and lead to that child reacting with physical aggression, such as hitting or kicking. The second suggestion, “No talking,” needs some modification when dealing with the upset child. We have found that allowing Alex to express his fears, anxiety, and/or anger verbally is necessary to resolve his agitation, and we need to listen to what he’s saying. Once we let him talk, we can then reassure him verbally; however, we must be calm, quiet, and positive and never argumentative in doing so. When a child is screaming, maintaining composure is not an easy task. Once we convey that we know Alex is upset and that we’re willing to help him deal with whatever the source of his frustration may be, he usually begins to settle down. Even the wording of our comments must be careful. For example, if we ask him what the problem is, he will likely become more agitated. If instead we say something reassuring such as, “We will help you,” he’s more amenable to our attempts to soothe him. The last rule about no eye contact also works because we find it more important to watch Alex’s hands as a judge of how he’s responding to the anxiety. As he calms, his hands stop shaking, and we know he’s back to his old self. In addition, we watch his hands to make certain he’s not ready to hurl something in anger or use them to attack us physically. Dealing with an anxious, aggressive child with autism can be upsetting and difficult. However, if the three basic tenets of “No touching, no talking, no eye contact” were utilized instead of “pouring gasoline onto fires” by upsetting the child even more, I truly believe fewer children with autism would exhibit behaviors leading to suspension or expulsion from school. It’s certainly worth a try.

“The Lord says, ‘I will guide you along the best pathway for your life. I will advise you and watch over you.’” Psalm 32:8

Confession

Recently, I have been following the case of Dr. Mark Geier, who treats many children with autism using various biomedical interventions. In April, his medical license was suspended for prescribing Lupron to children with autism, and this month he has been in the appeals process, trying to regain his medical license. Lupron is a man-made form of a hormone that causes production of testosterone in males and estrogen in females to temporarily shut down. Used primarily for prostate cancer and endometriosis, Lupron is also used to manage precocious, or early, puberty in children. Among the various issues of Dr. Geier’s suspension is the assertion that he misdiagnosed children with autism as having precocious puberty, which Dr. Geier believes occurs as a result of mercury elevating testosterone levels in children with autism and heavy metal toxicity. Since studies have shown that high levels of testosterone have been associated with risky and antisocial behavior—two traits also associated with autism—lowering testosterone levels in these children temporarily may explain why parents who have used Dr. Geier’s protocol have seen improvements in their children with autism.

I must admit that had Dr. Geier’s Lupron protocol been available when Alex was younger, we may have pursued this treatment with him. While I don’t think that Alex’s puberty was actually precocious, I do think that he had elevated testosterone levels in his early teens that led to impulsive and often aggressive behaviors. From urine and stool testing, we do know that he had mercury poisoning, which we addressed with chelation by oral DMSA for a few years. When Alex was in his early teens, he suddenly went from being docile and easygoing to hostile and aggressive. Although I suspect this behavior is not uncommon, I think many parents do not talk about this difficult phase in the development of a teen with autism, perhaps because the behavior is embarrassing, or more likely because the change in the child is terribly upsetting and emotionally draining. At the time we were dealing with Alex’s intense outbursts, the only people who truly knew about the extent of Alex’s aggression, which we later figured out were anxiety attacks in which he went into “fight” mode with too much adrenaline, were my parents and a couple of my most trusted friends. Because I was both embarrassed by and distraught about Alex’s physical attacks on Ed and me, I couldn’t explain what was actually happening and would simply tell people who sensed I was stressed that we were going through a rough time with Alex and not elaborate further. Like a battered wife, I became adept at hiding any injuries Alex had inflicted upon me during meltdowns with concealer makeup and clothing (even long sleeves in the summer) to hide bruises and scratches. Now that I have come to terms with that awful period of our life, I can confess that during these meltdowns that occurred almost daily, sometimes more than once a day and at times lasting for more than an hour, Alex would scream at us, accuse us of things we had not done or said, spit at us, pull our hair (even pulling out some of mine by the roots), claw us with his fingernails until he drew blood (Ed and I both still have scars on our hands from trying to defend ourselves from these attacks.), grab our arms hard enough to leave bruises, bite us, hurl objects at us, as well as slap, kick, and hit us hard. Many times it would take both of us using all of our strength to restrain him enough not to hurt himself or us. Although Alex did not usually engage in self-injurious behaviors, or SIB’s, as some children with autism do, occasionally he would be so distraught that he would try to claw his eyes, which required that Ed and I each grabbed one hand to keep him from harming himself. To prevent him from scratching his face and eyes or us, we would put oven mitts on his hands for protection. We knew that Alex was not himself because during these fits, he would often foam at the mouth and have a crazed look in his eyes. Since Alex is several inches taller than I am, he has a distinct advantage over me in height, and the seemingly superhuman strength he probably gained from adrenaline during these meltdowns made Ed and I, both fairly slender, no match against our slender but surprisingly strong and tall son when he was in this mode. Therefore, we asked his doctor for a sedative to calm him during meltdowns, and she prescribed Ativan, which helped tremendously. In addition, I took lessons in the martial art of tae kwon do for a year to learn to defend myself.

This is one of autism’s dirty little secrets: delayed language, motor, and social skills commonly associated with autism are difficult, but they are just “a drop in the bucket” when compared to dealing with the less discussed hormonal rages of the teen years. I have decided to be candid about our experiences because people need to know what is going on behind the scenes in many families with autism. We can’t come to your birthday party or plan anything in advance because our teenager with autism might suddenly and for no apparent reason fly into a rage like the Incredible Hulk, and trust me, you don’t want to be part of that. Thankfully, through various interventions, including praying fervently, adding the supplements GABA and over-the-counter low-dose lithium, learning to deal with these meltdowns more calmly so as not to “pour gasoline on the fire,” and simple physical maturation that likely leveled any hormonal imbalances, Alex’s outbursts became much less frequent and less intense. On the occasional times where he reverts to aggression, he is easier to manage, but we still must be on guard for those meltdowns. Nonetheless, we are grateful to have survived those terrible times and feel great empathy for parents who suffer silently as their children are going through this extremely trying phase. As I explained in my last entry, “Curebie,” I continue to pray that a cure for autism will be found so that no child and no parent must deal with the side effects, including extreme meltdowns, this condition causes. In the meantime, I also hope that those who know families dealing with autism would show compassion, realizing that, like an iceberg, there may be more to the situation than what shows on the surface.

“Fight the good fight of faith, lay hold on eternal life, to which you were also called and have confessed the good confession in the presence of many witnesses.” I Timothy 6:12

Flow Chart

One of Alex’s favorite books is the American Medical Association Family Medical Guide. With its colorful diagrams, clearly written explanations of a myriad of diseases, and graphic photographs depicting various conditions, the book can hold his attention for hours. Judging by the worn cover and pages, he has perused most of the book’s nearly 800 pages repeatedly. Perhaps the most interesting section of the book, the Self-Diagnosis Symptoms Charts, guides the reader through various symptoms on flow charts to possible diagnoses. To emphasize those symptoms which could mean potentially dire circumstances, the editors have used bold face type and capital letters to emphasize the urgency of the situation, letting the readers know that they need to call 9-1-1 or go to the nearest emergency room. Since children with autism often do not follow the typical patterns of development and behavior outlined in parenting guides, flow charts like those in the Family Medical Guide could be helpful to parents and caregivers of children on the spectrum. For example, a chart on muttering, which can be a precursor to the dreaded meltdowns, might appear as follows.

MUTTERING

Are you in a public place?
YES-Attempt to leave NOW!
NO-Good!

Are the cable and/or Internet working?
YES-Good!
NO-CALL SERVICE PROVIDER NOW!

Are there any objects within reach that could become projectiles?
YES-MOVE THEM NOW!
NO-Good!

Is the muttering child wearing shoes?
YES-REMOVE them quickly; being kicked by child with shoes hurts more!
NO-Good!

Has muttering escalated to yelling?
YES-WAIT until yelling stops before trying to reason. DO NOT YELL BACK!
NO-Good!

Are the muttering child’s hands shaking?
YES-Shaking indicates excess adrenaline.Have sedative ready for MELTDOWN.
NO-Good!

Of course, most parents who have children with autism already have typical symptoms committed to memory as well as how to deal with the behaviors and, therefore, would not actually need a step-by-step flow chart. For those who’ve never experienced an autism meltdown, whether they be parents of typical children or the general public inclined to look down upon parents dealing with these issues, charts like this might help them be more sympathetic and realize that the parents and their children with autism are doing the best they can under difficult circumstances. We can’t expect others to be understanding if they honestly don’t understand, so maybe we need to be more candid in our explanations. So now you know; when my kid is muttering, I remove his shoes and all objects that can be hurled, pray that the cable and internet are working, hope that we are home, fight any urges to yell back at him or attempt to reason with him, and always keep Ativan close at hand for the really bad times. Having read a lot of medical books for fun like Alex does, I never ran across any autism meltdown guidelines from Dr. Spock, Dr. Lendon Smith, or “Dr. Mom,” but “Dr. Pam” figured it out through experience and wants to share the wisdom gained over time. Of course, now that we have this down to a science, Alex will probably come up with a new behavior to control; I’ll anticipate that new challenge and hope we can make a plan for that, as well.

“We can make our plans, but the Lord determines our steps.” Proverbs 16:9

Defusing

Lately, Alex has been a little edgy, which makes life feel as though we’re walking through a minefield. Springtime frequently seems to make him somewhat irritable. We’ve never been certain as to whether he has environmental allergies in the spring that agitate him, or whether he has had enough of being cooped up inside for the winter, such that his cabin fever makes him more easily upset. In addition, the various activities Ed and I have at the end of our school year may make us more stressed, and I suspect that Alex, who is sensitive to other people’s feelings, picks up on the differences in our moods. Nonetheless, we have been on guard lately for him to launch into anxiety-driven complaint sessions that we have to defuse so that they don’t escalate into full-blown meltdowns.

The other day, Ed stopped by our local cable office on his way to work to pick up a new modem for our Internet service because our old modem, although currently working, is outdated and slow. He had planned to install the new modem when he got home. Unfortunately, without telling us, the cable company decided to cut off our Internet service through the old modem as soon as he picked up the new modem. Shortly after Ed left for work, Alex came whining to me that I needed to fix the computer, and I discovered that neither his laptop nor mine had Internet access. In a panic knowing that Alex would be an unhappy camper without the Internet, I called Ed to tell him what had happened, and we figured out what the cable company had done. Ed promised to come home from work as soon as he could to set up the new modem and restore our home Internet access. In the meantime, I called my mom and shared our dilemma, and she immediately suggested that I bring Alex over to their house, where the Internet was working fine. This solution eased Alex’s anxiety about not being able to Google Jeopardy trivia or to play his favorite You Tube videos. By the time Alex and I got home, Ed already had the new modem hooked up and running smoothly, so we had averted the crisis by defusing Alex’s anxiety over not being able to use his computer access to the Internet.

During the past couple of weeks, Alex has been obsessed about when past obsessions of his went away. He gets himself worked up telling us repeatedly about when he stopped doing certain things, such as using his graphing calculator or playing specific video games. In addition, he makes a point to tell us that he NEVER wants to do those things again. After having gone through this routine several times, I decided that writing down his complaints on a notepad might ease his anxiety, especially since he is a visual, rather than auditory, learner. I thought perhaps if he could see that we took his concerns seriously enough to write them down, and if he could see them written, he might be less upset by these obsessive thoughts. Since then, each time he starts talking about them, Ed or I pull out the notepad and start reading the details to him, which seems to calm him and prevents him from becoming aggressive or really upset. Sometimes he wants to give more precise details to the information already written, so we will add those to the current list. Specifically, Alex’s updated list of concerns includes the following items, to name but a few:

“Starting May 23, 2008—tired of playing Bosconian [video game], had a record score of about 2 ½ million, which took about 5 hours

No graphing calculator since February 2003

2008—bad year—deep voice August-December; now medium voice

Don’t want to play Monopoly Junior [computer game]—last played Wednesday, January 3rd, 2007—takes too long, up to a day, 100% boring, more boring than hockey

August 7, 2008-December 2008—tired of voices [He used to imitate other people’s voices constantly.] all the time—Retired voices January 2009—NEVER AGAIN!”

Although trying to calm Alex’s upset can be emotionally draining, we’re pleased that he seems to respond positively to using the notepad. In addition, his current concern for eliminating past obsessions seems to be a sign of progress that he doesn’t want to obsess over things anymore. Ironically, this new obsession with old obsessions seems to bother him more than the old ones ever did. Nonetheless, we know this phase, as has every other phase he’s gone through in the past, will eventually disappear, and we will feel blessed to have come through yet another stage in his development.

“For the Lord your God is living among you. He is a mighty savior. He will take delight in you with gladness. With His love, he will calm all your fears. He will rejoice over you with joyful songs.” Zephaniah 3:17

Hiccups

During the last few weeks of my pregnancy with Alex, he had hiccups every day about the same time mid-morning and around ten o’clock at night. The first few times I experienced these subtle yet rhythmic movements, they startled me. Once I realized the source of the little ripples in my abdomen was simply Alex’s diaphragm in spasms, these twice-daily occurrences were something I learned to anticipate, and I would find myself waiting for the next session to happen. After Alex was born, he continued his hiccups schedule of mid-morning and late evening, and again I found myself watching and waiting for the next time the hiccups would occur. Over time, the daily hiccups disappeared, no longer part of a regular pattern. When Alex was older, we would give him a spoonful of sugar to make his hiccups disappear. As with anything out of the ordinary, he likes to know that there is a solution to the problem, and with hiccups, he knew to come ask for some sugar. Rarely, he would need a second dose of sugar to remedy his hiccups, but they always went away fairly quickly.

During Alex’s difficult adolescent years, he had meltdowns nearly every day and sometimes more than once a day. Like the hiccups he had shortly before and after his birth, we learned to anticipate these uprisings and waited for them to erupt. Over time, with maturation and some tweaking of his nutritional supplements, Alex’s meltdowns gradually became less prevalent, much to our relief. Things that once set him off, such as people coughing or the cable television going out, no longer would send him into tailspin mode. Even when he did become agitated, we could usually talk him down from his anxious state and prevent the anger and upset from turning into agitation and aggression. (As Ed and I always rate a “good” meltdown: “Nothing got broken, nobody got hurt.”) After going for several months without any real meltdowns, we had hoped that maybe Alex had finally and completely outgrown this stage. Recently, Ed and I compared the scars on our hands, remnants of where angry Alex clawed us with his own hands, and we noted that the marks remind us how thankful we are to have overcome those difficult days. My parents have again offered to stay with Alex as they did when he was little so that Ed and I could go out to dinner alone, something we haven’t done in many years because at least one of us needed to be with Alex in case he became agitated. With each month that passed without any incidents, we were enjoying a life of relative normalcy, and we felt blessed for this respite from the most difficult aspect of Alex’s autism.

Like those hiccups, however, the anxiety arises when we often least expect it. Last week, after months without any meltdowns, Alex became upset and threw a huge fit, complete with physical aggression. Ranting for no apparent reason about how he never wanted to use his graphing calculator again, he began hitting and clawing us to make his point, despite our reassurances and a dose of the sedative Ativan. He seemed to calm down a little, but then he began yelling and striking again, this time with a crazed look in his eyes and spitting at us to make his point, as well. After two more doses of Ativan, he finally settled down and returned to his gentle self, sleepy from the sedative and the meltdown. After he fell asleep, Ed and I did our traditional post-meltdown de-briefing, trying to figure out what had set off the fit and if we could have done anything better in handling it. Convinced that we had dealt with him as well as could be expected, we began thinking about what was different that might have agitated him. That evening, we had gone to a new restaurant, and we began analyzing what Alex had eaten that might have been a trigger for his behavior. We concluded that the potatoes he’d eaten likely had wheat flour in the sauce, and since Alex has been on a gluten-free diet for more than ten years, his system doesn’t likely tolerate glutens well. Although we were somewhat shaken by the experience, we were relieved that he did settle down, we had worked together to overcome the behavior, and we probably had identified the source of the problem through our detective work. Since we suspect a dietary infraction was the culprit, our commitment to keeping his diet gluten-free remains strong. Alex’s meltdown last week also made us appreciate how much his behavior has improved over the past several months because this was a rare event instead of a daily one. Nonetheless, while we enjoy the good behavior he exhibits the majority of the time, we stand on guard, waiting for those possible hiccups in life that challenge us and keep us praying for a total healing of Alex.

“From six calamities He will rescue you; in seven no harm will befall you." Job 5:19

Progress Achieved

While cleaning house this past weekend, Ed and I remarked on another positive change we’ve noticed recently in Alex: he’s become fairly neat. Only a few months ago, he had the annoying habit of tearing up little pieces of toilet paper and strewing them throughout the house, requiring a need for frequent vacuuming. Apparently he has lost interest in doing that in the last few weeks because I only found two tiny pieces of toilet paper on the bathroom floor on Saturday. Overcoming this habit also explains why I don’t have to change the toilet paper rolls as frequently as I had been doing. As I mentioned in my blog entry “Stages,” Ed and I have commented that every annoying stage eventually disappears, only to be replaced by an equally annoying phase. The toilet paper tracked through the house had replaced the pieces of legal pad paper with Alex’s lists written upon them scattered in nearly every room. We solved that problem several months ago when we started buying composition notebooks for him to use for his sacred lists; not only does that prevent list loss but also limits list litter. Thankfully, as Alex has matured, he has outgrown various phases, some of which he couldn’t really help and others that seemed to be deliberately irksome on his part.

Because of his obsessive-compulsive tendencies, Alex has initiated routines throughout the years regarding eating. At times, he insisted upon eating three servings at every meal, so Ed and I would estimate how much he could eat and divide that amount into thirds for the required three servings. Later, he dropped the three servings plan and went to timed meal sessions instead. He would set a kitchen timer for ten minutes of eating—no more, no less. He would even leave one bite to eat during the last few seconds of that ten-minute session. Within the past few months, he seems to have a sense of how much he wants and needs to eat and simply eats that amount in whatever time it takes. He’s no longer tied to an obsessive routine about meals, which shows progress. Some of his past behaviors were also linked to his sensory issues. For example, wearing shoes and socks seemed to bother him, and he would only wear them when he was going someplace. As soon as he walked in the house, he would immediately take off his shoes and socks and go barefoot, no matter what the weather. In another recent change, he will now keep his shoes and socks on his feet long after he’s arrived home, apparently not bothered by the feel of them. Because of his sensitivity to sounds, he had previously been upset by thunderstorms and the sound of people coughing. Whenever it would storm in the night, he’d have a meltdown, yelling and pounding on his bedroom wall. Once we realized that he couldn’t hear thunder in our basement, we would take him to sleep in the basement bedroom while we slept on the pullout couch in the basement family room. Shortly after we arrived at this solution, Alex seemed to stop being upset by storms and now sleeps through them. Similarly, he is no longer bothered by people coughing, which is a relief. If Ed or I had a cough, we’d try to keep away from Alex because he’d run at us, grab our necks, and yell, “STOP COUGHING!!” Being sick is never fun, but being sick around Alex was especially stressful. Now, he never seems to be fazed by anyone coughing, which is another step of progress for him.

Besides the behaviors linked to his sensory and OCD issues, Alex also just did things to be ornery. Like many children, he would engage in various attention-seeking behaviors, such as whining, arguing, and interrupting conversations. Even though he doesn’t seem to have any sense of being self-conscious, he did seem to know how to do things that might embarrass us. We went through a stage where he thought it was hysterically funny to say stupid things when I was trying to order fast food in the drive-through lane. From the backseat, he’d yell into the speaker at McDonald’s: “I want pizza!” or his personal favorite, “I want INFINITY hamburgers!” Then he’d laugh and giggle as I’d try to give the real order. He also found it amusing to keep pressing buttons that would make loud noises, including the one to find the cordless phone or the one on our key chains that would set off our car horns. Needless to say, those were hidden from him for several months, as was a small tape recorder he would use after provoking us so that he could record our exasperated responses to play back for his own amusement. In addition, he used the television to annoy us, turning up the volume as loud as it would go, just to watch our aggravation. He would also overreact to quick changes of commercials, which he called “switchovers,” by tipping over lamps. After replacing various broken light bulbs, lampshades, and lamps, we were pleased when he got past that stage. During those particularly trying early teen years, he’d ask me every night before he went to bed if he’d done anything bad that day. I’d try to minimize his infractions and tell him I loved him so that he knew we’d forgiven him. Now, every night before he goes to bed, I thank God that I can’t think of any bad things Alex has done that day. The progress he’s achieved is such a blessing to all of us, and, as I now tell Alex every night, we’re so proud of the nice young man he’s become.

“The path of the righteous is like the first gleam of dawn shining even brighter till the full light of day.” Proverbs 4:18