Employment and Autism

 

In the past few weeks, Ed and I have been trying to make certain Alex remains on our family health care insurance policy after he turns 26 in December. Because he has autism, he should easily qualify as a disabled dependent eligible for continued coverage. After various phone calls, emails, and a marathon meeting Ed had with his employer’s human resources department head, everyone agrees that Alex should be able to remain on the policy with enough proof provided.

Digging into my carefully organized files, I easily found four documents indicating the nature and scope of Alex’s disability. All of these reports came from assessments made after Alex turned eighteen, so they were recent and addressed his disability as an adult. Despite submitting the report from a psychiatrist, another from a psychologist, the confirmation from Social Security that he qualifies for disability payments under federal guidelines, and a detailed report from the state of Indiana explaining the impact autism has on Alex’s daily life thereby qualifying him for state autism support services, the insurance company needed another form completed.

For the top half of the form, we provided typical information regarding name, address, birthdate, and policy number. However, the focus was clearly upon Alex’s employment history, which is nonexistent because of the obstacles autism presents for him. The bottom half of the form was to be completed by his primary care physician and focused on confirming his disability diagnosis and its impact on potential employment. Thankfully, Alex’s doctor clearly and concisely explained why Alex is not able to hold a job now nor in the foreseeable future. Noting impaired language skills and limited daily living skills, his doctor made evident Alex’s weaknesses that currently make holding a job impossible. Hopefully, this completed form will satisfy the insurance company’s requirements.

While we would certainly prefer that Alex be able to live independently and pursue a meaningful career, we know that he relies upon us to take care of his needs, including making sure that he has good health insurance. He is not alone in being an unemployed adult with autism, however. Statistics indicate that only 58% of adults with autism who have completed high school ever wind up holding paying jobs. Even those who do successfully hold jobs often have problems with organization and dealing with co-workers. This trend may be starting to change, though.

An article written by Neil Parmar published online last week in Entrepreneur entitled “Why Microsoft, Chase and Others Are Hiring More People With Autism” touts the value of employees with autism. [To read this article, please click here.] Specifically, people with autism often bring creativity, attention to detail, and technical skills that employers value, according to the article. In fact, approximately fifty U.S. companies currently have a majority of employees with autism.

A leader from accounting and professional services firm EY, Hiren Shukla asserts the value of workers who have autism, stating, “We’re not doing this as a diversity and inclusion program; it’s actually filling a very specific business need.” This sentiment is echoed by banking company J.P. Morgan Chase that has indicated traits found in autism are “ideal assets in the workplace, particularly in industries like tech and engineering.” Moreover, software corporation Microsoft describes workers with autism as an “untapped pool of talent.” This recognition of the skills employees with autism can bring to their companies gives hope that more adults with autism can find meaningful employment that benefits them and their employers.

Despite their unique talents, people with autism may require additional support to be successful in their jobs. This article describes the development of social service agencies and nonprofit organizations to help train and place adults with autism in jobs and to provide ongoing support. In addition, state vocational rehabilitation agencies can assist adult employees with autism by providing job coaches and arranging transportation to and from work. Some innovative companies have recognized the special needs of their employees with autism as well as their value and offered support in the forms of job coaches and financial planners, and even giving nutritional advice. This genuine caring for their employees should be a model for other companies willing to hire adults with autism.

Although the current unemployment figures for adults with autism can be discouraging, the success some companies are having in hiring these people with a unique skills set gives hope that more adults with autism will be able to find jobs someday. As more and more children with autism become adults with autism, society needs to be more creative and find ways to make them economically independent and valued members of the workforce. Perhaps someday parents won’t have to fight to keep their adult children on their health insurance plans because they are unemployed due to their disability.

For Alex, I have hope that instead of focusing upon his impaired language, fine motor, and social skills, someday he will be valued for his phenomenal memory; his keen skills in math, reading, and proofreading; and his inquisitive mind. Even better would be that he is recognized for his earnestness, his enthusiasm for things he loves, and his sweetness that endears him to those who see past the obstacles autism has imposed on him to the special soul God created him to be.

“Work willingly at whatever you do, as though you were working for the Lord rather than for people.” Colossians 3:23

Pet Pat Phrases

 

“You’re old enough to have a driver’s license!” Alex yelled at me last week. As usual, he reversed his pronouns—a common feature in the speech of people with autism––saying “you’re" when he actually meant “I’m.” What was unusual was that he was raising his voice to let me know he was upset; typically Alex is fairly easygoing and speaks softy. Clearly, he knew what he needed to do to get my attention. Because he has always struggled with speech, Alex has certain favorite pat phrases he uses to communicate beyond basic conversation. While these often repeated sayings may not have much meaning on the surface, we have learned that the words carry deeper intent.

For example, we know that Alex is always on the lookout for numerical values to quantify people and objects. When he discovers patterns, he is elated and happily announces his findings to us, such as, “Our phone number is a prime number!” Not content to make this point only once, he often repeats this discovery. In fact, every time we have to give our phone number, he reminds us that it is prime. Moreover, his enthusiasm never wanes, no matter how many times he reminds us of this mathematical fact. Because he is so happy with himself about this remark, we encourage him with praise, noting how clever he is to have figured out the connection.

Even better than getting praise for finding prime numbers is the noting of rare instances. Alex loves anything he perceives to be a rare occurrence, and he enthusiastically announces his discoveries to us. For instance, he gets excited if a house number has five digits and will say, “That’s very rare to have a five-digit address!” If he’s watching television and two consecutive commercials are the same, he’ll tell us with awe, “It’s extremely rare to have two of the same commercial in a row!” I’m not certain that these instances are as “rare” as Alex thinks they are, but his enthusiasm for noticing them and talking about them is contagious, and we can’t help but act equally excited when he tells us. Obviously, he finds great joy in instances he thinks are not ordinary, and he wants to share them with others.

Once or twice a day, he treats us with the following announcement: “It’s rare for a person to have a two-digit weight!” What he’s trying to say in his inimitable way is that most adults weigh at least one hundred pounds. In addition, he knows that it’s not polite to discuss people’s weights, so he’s trying to avoid being rude by being so general. However, we know the real story behind this daily comment. He has seen a commercial with petite NASCAR driver Danica Patrick, whom Alex knows weighs less than one hundred pounds because he did a Google search to find out how much she weighs. I suppose he thinks this is a polite way to discuss her weight, and probably many women would be as happy to weigh two digits as Alex is to talk about it.

In addition to noting what famous people weigh, Alex also pays close attention to their voices. If he hears someone singing with a raspy voice, he often asks, “Is that Bob Dylan?” If he hears a song by Elvis Presley or Johnny Cash, Alex makes the offbeat comment, “Elvis had a deep voice when he died” or “Johnny Cash had a deep voice when he died.” Sometimes to make his point, Alex will share these statements by saying them in a deep voice, which makes them even creepier. His fascination with deep voices also shows when he hears kids on television whom he thinks have deeper voices than they should at their ages, and he will often comment, “It’s rare for kids to have deep voices.”  On the other hand, he also notes voices of older people and remarks if they have “an old man’s voice” or “an old lady’s voice.” Since we have told him not to say those comments in front of older people, he confines his judgments to only those he hears on television. However, he has decided that it must be complimentary if elderly people don’t show their ages in their voices, so Alex enthusiastically comments, “He doesn’t have an old man’s voice. That’s very rare!”

As Alex listens to people’s voices, he often makes comparisons evident in questions he asks. For instance, if I speak in a higher pitch, he thinks I’m my sister and will ask, “Is that Aunt Tammy?” If I speak very sweetly to him, he thinks I’m my mom and will ask, “Is that Nanny?” When I tell him it’s just me, he frankly seems a little disappointed. Because my dad and brother sound quite a bit alike in the way they speak, Alex is often confused about who is who, based on their voices. He often asks, “Is Uncle Freddy Grandpa?” While he knows they are two different people, his question clearly shows that their voices confuse him about who is who. The most amusing comparison he makes is when he sees a local commercial for an attorney whose voice reminds him of my brother-in-law, and he asks, “Is Peter Francis Geraci Uncle John?”

One thing we have learned about the repeated phrases and questions Alex uses is that they often reveal hidden meanings. For example, he frequently asks questions about the weather. Even though he has a strong interest in meteorology, these questions go beyond discussing a favorite topic, we have learned. When Alex asks if it’s windy or rainy, he’s concerned about the noise that the wind or rain will make or perhaps they may develop into a stronger storm, like a tornado. Before he takes a bath, he nearly always asks if there are thunderstorms––even on sunny days––because he knows it’s not safe to bathe during a storm, and he fears that his beloved bath could be delayed by the weather.

As Alex has gotten older and his language his improved somewhat, he has learned that he can convey not only his observations but also his thoughts and feelings. While these phrases may be not as clear as they could be, we can usually figure out his intended meaning. When he asks if he can do something, he usually means that he wants to do that activity. On the other hand, if he adds “or not” to the question, he doesn’t really want to do that activity, but he’s testing to see if we would allow him to do so. We know this because if we ask him if he wants to do that, he usually tells us no.

In his cry of frustration the other day about not being able to drive, we knew what was wrong because we have heard him complain about this before. He wanted to go someplace, and we told him we would take him later. Knowing that most people his age can drive bothers him because he realizes that he lacks the independence he should have. As parents, we understand his upset because we, too, hate that autism has prevented him from doing typical things. We wish we could hand him the car keys, tell him to be careful, and send him out into the world to do what he wants. However, we are grateful that unlike many adults with autism, Alex can speak and share what he’s thinking. As we pray for his continued progress, we hope that someday Alex might be able to say clearly whatever he wants to say and to drive wherever he wants to go.

“Look!” he said. “The people are united, and they all speak the same language. After this, nothing they set out to do will be impossible for them!” Genesis 11:6

Mental Health Concens and Autism

 

Last week, Stephen Grcevich, M.D. posted an important and insightful article online at the Key Ministry website entitled “The Mental Health Crisis Among Persons with Autism.” [To read this article, please click here.] Dr. Grcevich adeptly summarizes research published last month in the Journal of Autism and Developmental Disorders regarding the link between mental health issues and autism. As if the challenges of autism were not enough, many people with autism often struggle with mental illness, as well.

The research Dr. Grcevich cites used government administrative health data and focused upon young adults 18-24 years old in Ontario, Canada. These young adults were divided into three groups: those with autism spectrum disorders, those with developmental disabilities, and those who were typical adults. Of those adults studied who were seeking medical help, 19% of the typical people had a psychiatric diagnosis, compared to 39% of those with developmental disabilities. In even greater contrast, over half of the adults with autism––52%–-had a psychiatric diagnosis.

This study also found that the young adults with autism were twelve times more likely than their typical peers to see a psychiatrist. In addition, the young adults with autism were nearly five times more likely to obtain psychiatric services through an emergency room and more than ten times likely to be hospitalized for psychiatric conditions than their typical counterparts. Clearly, young adults with autism face psychiatric crises much more than other people their age do. As the abstract of the research article wisely concludes: “Planning for the mental health care of transitional age adults with ASD is an important priority for health policy.”

While this study examines mental health issues in young adults, another study Dr. Grcevich cites indicates that adolescents with autism also suffer from mental health disorders. This research published in the Journal of the American Academy of Child and Adolescent Psychiatry studied children with autism who were between 10 and 14 years old. This study found that 70% of these children with autism had at least one mental health condition, such as ADHD, anxiety, or depression. Moreover, 41% had at least two mental health disorders in addition to having autism. Consequently, the psychiatric issues seen in young adults in the Canadian study likely began years earlier in adolescence.

If mental health issues in children and adults with autism are not addressed or resolved, tragedy can result. In another article entitled “The suicide epidemic among high-functioning persons with autism,” Dr. Grcevich cites research regarding links between suicide, mental health disorders, and autism. [To read this article, please click here.] Specifically, he refers to a statistic from the British Journal of Psychiatry indicating that adults with autism of average or above average intelligence are nine times more likely to commit suicide than their typical peers.

In another study Dr. Grcevich references from Research in Autism Spectrum Disorders, children with autism were found to be twenty-eight times more likely to experience suicide ideation than their typical peers. Because of this startling finding, the researchers of this study concluded, “All children with autism should be screened for suicide ideation or attempts because ideation and attempts are significantly higher than the norm and are present across the [autism] spectrum.”

Speculating on reasons why people with autism can be suicidal, Dr. Grcevich offers potential reasons. He notes that people with autism are more likely to be isolated socially and lack social supports; moreover, they are often victims of bullying. In addition, people with autism may experience problems with executive functioning of the brain. This may cause them to act impulsively, have difficulty in solving problems, and impair their ability to self-regulate their emotions. Furthermore, people with autism often fixate on specific thoughts and ideas, which may be the case in suicide ideation.

From our experience of raising a child who was diagnosed with autism at age four, obsessive-compulsive disorder at age eleven, and generalized anxiety disorder at age nineteen, I believe additional factors play a part in mental health issues reaching a critical stage in children and adults with autism. First, we had a great deal of trouble finding professionals who knew how to deal with autism. In addition, we discovered that few facilities know how to address autism and mental health issues. To add to the problem, insurance companies limit mental health care treatment, refusing to pay for a reasonable amount of time needed to stabilize a person in a mental health crisis. Furthermore, the unfair stigma of mental illness may prevent some parents from seeking help for their children with autism.

As parents who had to search and struggle to get our son the help he clearly needed, we know how important dealing with mental health issues in autism is. After discovering that our son’s aggressive outbursts that made him a danger to himself and others were triggered by severe anxiety, we knew that proper medication was necessary. Although we were heartbroken to have to hospitalize him in a psychiatric ward for weeks, we know that time of treatment was absolutely crucial to his well-being and are thankful that we found professionals who were able to help us through the crisis. While we would rather forget those turbulent times, we know that we must share our story in hopes that other parents would seek help for their children and know that they are not alone.

In concluding his article, Dr. Grcevich emphasizes the need for churches to support families whose children have autism, and I completely agree with him. However, in the absence of a church family who offers support, parents must remember that God will always support them through the trials of autism and mental illness and offer them hope for a future of healing and happiness. Though we carry scars from our battles, I know God has brought us through those struggles better and stronger and filled with faith and hope that Alex will continue to get better as a testimony to God’s goodness.

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

Voice Perception and Autism

 

Last week Spectrum published a fascinating online article written by Nicholette Zeliadt regarding research on how voices of people with autism are perceived. [To read this article, please click here.] The article entitled “‘Tone’ of phrase may differ in autism, but meaning is clear” summarizes research by Dr. Noah Sasson and his colleagues at University of Texas at Dallas that was published in Autism Research on August 17, 2017. Noting that people with autism often use unusual speech patterns and have difficulty with social skills, the research examined how listeners perceive these differences. This study focused upon effects of “emotional prosody,” the cues that convey emotions and make speech different from written text, such as tone of voice and volume.

To test perceptions of speech patterns, the researchers had thirty men of average or above average intelligence­––15 typical men and 15 men with autism––make audio recordings of five phrases with five different ways of saying those phrases. These phrases, such as, “I can’t believe this” could convey a variety of emotions, depending on the tone of voice. The phrases were said with the following emotions: happy, sad, angry, interested, and neutral. Afterward, the tones were analyzed for volume, pitch, and how long it took to say them. The men with autism were louder, had greater pitch variety, and took longer to say these phrases with emotion, but were the same volume, pitch, and length in the neutral tone as the typical men.

Later, a group of individuals (22 people with autism and 30 typical people) listened to these audio recordings and identified the emotions conveyed by the prosody of each statement. Not surprisingly, the people with autism had more difficulty identifying the emotions conveyed by each statement. However, all listeners were better at correctly identifying the emotions conveyed by the speakers with autism, who used exaggerated volume and pitch. Despite their unusual prosody, the men with autism could clearly convey the emotions they were communicating to others.

While the typical listeners were able to identify the emotions the speakers with autism conveyed, they perceived their speech as less natural and formed unfavorable impressions of them. These negative reactions correlated with an earlier study this research team did in which they showed typical people videos of people with autism speaking. After watching these videos, the typical people indicated they were unlikely to want to interact with people with autism. However, when the typical people only read transcripts of what the people with autism said, they did not form these negative biases. Consequently, what the people with autism said was less important than their speech patterns, which made typical listeners quickly form negative first impressions of them. Moreover, the researchers found that the typical people’s negative perceptions of people with autism were quite strong and did not change with increased exposure; they understood what the people with autism were saying, but they could not get past the unusual ways they spoke.

After seeing the negative ways typical people react to how people with autism communicate, the researchers’ goal is to find ways to minimize negative biases against people with autism. They hope that the more typical people understand people with autism, the more positive their perceptions of people with autism might be. In addition, the decrease of bias could improve social experiences for people with autism as the likelihood for interaction with typical people could improve. The research team plans to do evaluations of people with autism and typical people getting to know each other in person to find traits that make positive judgments and interactions possible.

Ironically, people with autism are often said to have poor social skills, yet they often seem to lack the prejudices found in typical people that negatively impact social interaction. While Alex finds people’s voice qualities fascinating and likes what makes them unique, others may judge him negatively because of his halting speech and emotional prosody affected by autism. I have often said that Alex is very perceptive about people and is intuitively drawn to those he sees as kind; perhaps he senses the bias of those put off by his style of speaking. Fortunately, he doesn’t seem bothered by those who would rather not engage with him, and he simply gravitates toward those who do see past his unique way of speaking to the clever mind and pure heart he possesses.

As the mother of a young man with autism, I found the results of these studies disappointing that many people have prejudices against people with autism because of the way they speak. However, I can also objectively say that before I had a child with autism, I probably would have reacted the same way: uncomfortable with those who spoke in unusual ways. As a teacher, I witnessed how some typical students reacted negatively to their peers with autism and tried to teach them to be compassionate. Yet, human nature sadly sometimes causes us to judge those different from us as being less. Truly, I hope that the researchers can find ways for people with autism to interact positively with typical people to develop greater understanding. Not only will people with autism benefit from more opportunities to develop their social interactions, but typical people could also benefit from all they can learn from people with autism.

“I love the Lord because He hears my voice and my prayer for mercy.” Psalm 116:1

Expressing Emotions

 

Recently, Alex’s behavioral therapist has been working with him on understanding and expressing his emotions appropriately. They use a system of colors to identify what he is feeling: green for calm and content, yellow for nervous, and red for frantic. This stoplight system seems to appeal to Alex as they discuss not only what might cause him to feel these different emotions but also how to cope when he enters the yellow and red zones.

For example, Alex indicates that he feels calm when he reads a book or watches television, but he becomes anxious if he’s worried about the stock market or thinks about losing money at the casino. (He’s only been to a casino twice and won money both times, but I guess this is a concern for him.) To ease his anxiety, his therapist has suggested that Alex should do things he enjoys and finds calming: reading books, watching television, and listening to music. When he becomes frantic, such as when he can’t find something, she recommends that he asks for help or talks to Ed or me to calm down.

Clearly, these strategies are working well as we have seen in the past week with situations that could have sent Alex into meltdown mode. With one of his medications reduced significantly and another taken away completely this summer because he has done so well managing anxiety, he has heightened sensory awareness. We notice him covering his ears for loud sounds, which he does not usually do, and his appetite has been off, probably due to increased sensitivity to tastes, smells, and textures. Since these medications were to ease his anxiety, we have closely monitored his emotions to make sure he would not be overwhelmed too much by the changes in his brain chemistry.

Fortunately, he has adapted quite well to the taking away of some anxiety medications. However, we have noticed that he does seem to have a wider range of emotions, which is to be expected and celebrated. Certainly, we did not want him to have his emotions flattened more than necessary. With the coping skills he has learned in behavioral therapy, he has gained control of his anxiety and learned to act appropriately, even when he’s not happy with a situation. However, sometimes these feelings take him a bit by surprise, even when he knows he’s entering the yellow or red zone.

On Monday evening, Ed and I had several errands to run, and Alex was happy to go along for the ride. Even though he had no particular interest in looking at picture framing hardware, he pleasantly accompanied us to five different stores, especially since he knew we were taking him to get an Italian ice afterward. At the last store, however, he was reaching his limit of patience. Somehow Ed had managed to get in the slowest check out lane, and I could see Alex’s patience being tested. I suggested that Alex and I wait near the doors so that we weren’t crowded in line. Still in the yellow zone, he was chatting with me, trying to remain calm but telling me he was worried, so I knew we needed to try something different before the red zone appeared. We walked back to the line where Ed was still waiting, and I took the items to the self-check lane while Ed and Alex went to the car to wait for me. Simply changing setting and knowing that he was about to receive his reward for patience––the Italian ice––allowed Alex to calm down and keep his anxiety from escalating.

On Thursday afternoon, in preparing for the arrival of Alex’s music therapist, I picked up one of Alex’s red composition notebooks from the floor and put it on the coffee table in another room to get it out of the way. A little later, I saw Alex walking from room to room, clearly searching for something. When I asked him if I could help him, he curtly told me no and continued looking for his lost possession. A few minutes later, I heard him yell downstairs, “You’re [meaning I’m] upset!” When I came to see what was wrong, he explained that he was looking for his red notebook, the one I had put away earlier. After reassuring him that I knew where it was, he was relieved, and I reminded him that he can always ask me for help if he needs it. On the other hand, I was proud of him for trying to find the notebook independently. Most of all, I was proud of him for verbalizing his feelings of frustration yet behaving appropriately.

Yesterday, we took him to a college football game, something he’d been eagerly anticipating all week. Because it was Homecoming Weekend, the stands were packed with people, much more crowded than usual. In addition, the speakers were blaring loud obnoxious rap music that seemed to bother Alex because he covered his ears several times. The final straw, however, was that the scoreboard was broken, and Alex relies upon those numbers, especially the game clock to keep track of the action. We had told him that we could leave at any time, but he managed to get through the first quarter. At the end of that quarter, I could see his anxiety emerging from the sensory overload. When I asked him if he wanted to stay or leave, he told me he wanted to leave but was concerned if that was okay. We assured him that he didn’t have to stay, and he seemed pleased we understood that he was overwhelmed by all the people, noise, and confusion. Again, we were proud of him for communicating what he needed to feel better without allowing himself to get too upset.

While it would be nice if every day were filled with only peaceful and pleasant things, we know that’s not realistic. As Alex experiences various situations and emotions, he will need to learn to cope with waiting, frustration, and sensory overload. Thankfully, he is adapting to these feelings and learning to express his concerns and needs so that we can help him find solutions to problems until he is able to navigate them on his own. Although we would wish for a life of only green times for Alex, we are pleased that he is figuring out how to cope with those yellow and red times that could overwhelm him by finding appropriate ways to deal with them. As always, we are grateful to God for all the progress Alex is making and for being able to witness just how far he has come.

“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