Spotted around the web: Coronavirus, genetic mutations, obsessive-compulsive disorder

Research roundup

  • Preventing cell death during brain development in fruit flies allows diverse neuronal circuits to form. Science Advances
  • The most widely used autism screen is as reliable for black children as it is for white children. Journal of Autism and Developmental Disorders
  • Children whose autism is a result of copy number variants in their DNA tend to have severe traits. International Journal of Developmental Neuroscience
  • Ethnic and racial minorities cite fear and distrust as reasons they do not participate in clinical research. Trials
  • Strategies to increase employment for autistic people include providing early work experience, highlighting strengths and overcoming stigma. Autism Research
  • People are mostly willing to share their genetic information, especially if they are compensated and have control over any reuse. PLOS ONE
  • When faced with a frustrating task, autistic children may react with emotional outbursts; these tend to be bigger and last longer in those with minimal verbal and life skills. Autism

Science and society

  • Coronavirus has prevented people from visiting their autistic family members who live in residential treatment facilities. Jewish Telegraphic Agency
  • Design hacks to make homes sensory friendly for autistic children need not be expensive or complicated. The New York Times
  • The television show “Everything’s Gonna Be Okay,” available on the streaming platform Freeform, features LGBTQ characters who have autism. The Advocate
  • An autistic teenager shares her experiences and debunks misconceptions in short explainers on the video app TikTok. Yahoo Lifestyle
  • Autistic author Charlotte Amelia Poe says embracing her otherness was key to moving forward in her life. The Guardian
  • Because of the coronavirus, telehealth services may be expanded for people insured by Medicare, the national health plan for older people in the United States. STAT

Autism and the arts

  • A Colorado orchestra and ballet company has won funding to create works that are appropriate for children who have autism or sensory sensitivities. The Gazette

Originally published on Spectrum

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Preparing for Possible Isolation

This was adapted from a post on a Facebook group and includes my response to which I felt was necessary in a time of pandemic.

Dustin

I come from we Aspies (we little professors) were considered role models in our classrooms, and were quite scholarly, and also obedient at home, in school, in church and in public.

So I’m wondering how these people are going to manage, now that stores are running out of their favorite foods, and now that we are having curfews and quarantines. In other words, how will autistics who haven’t bothered to adapt going to deal with all this change?

-If an autistic elopes and breaks quarantine during a curfew or quarantine, what do you suppose will happen?

-And if your autistic tries to lecture a police officer who is trying to maintain peace and order, what do you think will happen?

-And if your autistic has a meltdown in public because his chicken nuggets are out of stock, what do you suppose will happen?

-And if a parent of an autistic is in dire need of medical assistance, what do you suppose will happen?

I really, REALLY want to know if you all are faring well, Do you think your lives will IMPROVE during the spread of this virus as the result of your stubborn refusal to take action in the areas I have mentioned, or do you think things will get worse?

A bunch of mostly unemployed, not romantically involved adult autistics who are living with their parents, or on government benefits.

So answer me this: If you know how to make your lives better, then why aren’t you making your lives better? There can be only two answers: Either you are lying when you say you know how to make your lives better, or you are just lazy. Neither is an acceptable attitude to have when people are fighting each others in stores over a single roll of toilet paper.

Do any of you really think anyone is going to put up with your tantrums and meltdowns now? Do you really think that these people are going to make exceptions for you when these neurotypicals won’t make exceptions for each other?

Wise up. Grow up. It’s the only way we’re all going to get through this crisis.

I’m in my 30s at the Genesis of Asperger’s, I had maybe one accommodation in public school because my parents fought tooth and nail for it. By my Junior year on my own I elected to fill into the mainstream of a high school of nearly 1,500. It can be done. I went to training school and was nearly self sufficient without accomodations. Later I went to community college, again without accomodations and while working part time and other necessitated duties.

Yes, I do have that same old job but if I didn’t love it, I wouldn’t be there and I get paid well to do it. I had other issues six weeks ago that necessitated me to move in with my parents until I get resituated.

I have seen it in action throughout the week in person autistics that have meltdowns because events are being cancelled. I used be that person until I learned the skills to become a adult. Yesterday, I got a call from my employer stating not to return to work for the time being after just being cleared to return (today was going to be my first day back) until this whole pandemic clears due to my employment being non-essential.

I have been a firm autism advocate all my life and even have a blog on it. However, my parents who I love graciously show me tough love . While staying with them I eat what they have and what is available.

No one likes to be told to stay isolated, but for the safety of our world it’s the best thing right now. Here we haven’t been told to do so but the signs are there. The local utilities ensured we would be connected throughout the outbreak. Technology is grateful. I have a lot of ideas when I likely have to be isolated. I got some books, movies, plan to author some. You have to be creative. You have to remain calm and listen to authories. My dad said it well today that we could be at war and be forced to do things. So be thankful. I communicated with my mentors about being frustrated about not being able to go back to work. They said they think God is telling me to take time for me and in my 34 years of living I have never done so. Everything happens for a reason.

I do understand that individuals have needs and it will be difficult for parents in the days ahead it will be difficult but it is a crucial time to gain the skill set because I’ve read where individuals are having difficulty, so brace yourself because I know it can be done and it isn’t easy but it makes a smoother family unit. Yes, there are individuals that will experience difficult items but this will teach everyone to be better prepared.

The Uncertainties Ahead

Unless you live under a rock, or are on tribal lands, the media is laden with constant breaking news of the COVID-19 (Coronavirus) Outbreak. The outbreak started in the Wuhan Provence of China and has spread around the globe attacking most of the continents. For the past week, the states has been in fear with federal, state, tribal and local jurisdictions having citizens testing positive or presumptive positive for the virus.

There is no cure nor vaccine, only treatment that requires one to have limited contact and requiring self-isolation from others, something that hasn’t been commenced since WWII. In the past few days, while trying to not get too immersed in overload, as it is not healthy and trying to remain calm. It is increasingly difficult to do so as cases of the virus got closer and closer to the area. We are now seeing airplanes being screened, cruise ships with cases, among others.

This week has been a difficult week with the start of Daylight Savings Time, a week where the full moon is abound and closing the workweek with Friday the 13th. With that as surrounding states in addition to Pennsylvania made gradual closures, the ultimate decision was made to close all schools and libraries, among other commonwealth sites. My mother works at the local state transportation department and was directed by her superiors to use social distancing upon return.

My employer is supported by the county government and the governing body set a declaration Friday. I received a phone call from my supervisor to not return to work until further notice as I am classified non-essential and have no workload requiring deadlines. However, my job support program is open as of now, although they have cancelled all outside and public events until further notice, although I have a feeling before long we as will be my mom will be sent home.

As an individual on the spectrum, I have experienced burnout the last few days from the local stores I visited. I have seen bare shelves and checkout lines extended in each aisle from the front of the back of a grocery store with only two cashiers (and one elected to work past his shift.) My mother and I stood in that line in that store for 35 minutes and the local super center had more checkouts open than the holidays. If you or your child has struggles being in crowds, I would suggest if possible an online service. Wal-Mart Stores are closed at night in order to restock and sanitize, although we got a up front parking space. I did snap photographs of the shelves of where the bread and potatoes are to be. The only breads were Gluten Free (My Dad is a Celiac, woo hoo!) organic and flavored. I have never seen so many TP references or Beavis and Butt-Head clips this weekend than I did in 25 years.

Bread Aisle
Potato Bins

Social isolation and distancing is a difficult situation for those of the special needs community. Today, I came across an article in USA Today where an aide in a public school for special needs in Chicago contracted the virus, therefore requiring the 200 students and staff of the school to self-quarantine. A local legislator is delivering supplies to those households. Nonetheless, this is very strenuous on the caregivers, as some individuals have compromising health issues, not to mention the behavioral challenges they face. The article noted that an individual was becoming physically aggressive as a result of being contained in their home. One parent stated “You can’t Neflix all day.” Special needs students face a challenge of being educated remotely as well

Tonight I am thankful as I am writing this blog post that I have the ability to regulate my emotions. Last week, at my job support program, as I was reading the daily announcements and staff announced certain events would be cancelled, another individual slammed his hands down and screamed at me to “shut up.” Thankfuilly, staff redirected quickly without incident but It did shake me up bit because I was looking at a less mature version of me. Over the last month and a half I have had several changes including my work and living situation that have been rather difficult on not only myself, but my parents as well, since I am residing with them.

Today, when I received that phone call to not report to work, I was frustrated. However, when I reached out to one of my supports, they reminded me of how these events were God’s plan and that they felt that this was a way of God telling me that I needed more time off. There is a possibility that I will be paid for missed work, but as this national pandemic is evolving, I am uncertain as of yet if that will occur.

Yes, autistics thrive off of routines, and I know several that do. But growing up I have been continually been taught that the need for flexibility needs to be brought in as necessary. Autists have issues with this and the times ahead are uncertain, however these are a few tips from several sources, this one I adapted from today’s post on Autism Apples Kool Aid

  1. Always tell the truth! You aren’t protecting your child by lying – especially when they are hearing things from other people. You don’t need to share a lot of details – just say that you are staying home for a while to keep from getting sick. Use social stories if you need to.
  2. Be ready for questions and answer them simply. Tell them it’s like a bad cold and that you will be right there with them if they happen to get sick.
  3. Make the change in routine seem exciting! More time for favorite movies! Time to make crafts and read books. Time to play outside. More time for iPads, Legos and model trains. More time for Sesame Street and color by numbers. I know the change in routine will be tough if you need to quarantine – just take a deep breath and know everyone else is in the same boat.
  4. Explain why they have to wash their hands so often – and make a game out of washing them. Let them make bubbles and squish them. Sing goofy songs to make sure they are washing their hands long enough. (I made Casey and Rob use hand sanitizer after we left stores yesterday and to wash their hands as soon as they got home. They thought I was nuts.  )
  5. Assure them that you have taken precautions and have enough food. (I’ve heard some crazy stories – I’m sure my kids have, too.) Lay those fears to rest. Share everything you have done to keep them safe. Again, even if your child can’t talk, they are hearing and they may be scared. Talk to them!
  6. Don’t let your kids see your stress. Easier said than done, I know, but if they see you are scared, it will scare them more.

In closing, take time to enjoy each other. You may struggle, but thank goodness for technological advancements! Embrace this time to show love for one another and count your blessings!

We will overcome!

Spotted around the web: Sleep problems, social comfort, police training

Research roundup

  • Suicidal behavior may be rooted in people feeling burdened by and excluded from society, both of which are heightened in those with autism. Journal of Autism and Developmental Disorders
  • Sleep problems in autism persist into at least middle age. Autism in Adulthood
  • Autistic people tend to feel most comfortable when they are around others on the spectrum. Autism
  • Children and adults with autism can count their heartbeats — a skill related to processing emotions — as accurately as typical people can, but they display different brain activity during the task. Autism Research
  • A family-based cognitive behavioral therapy may ease anxiety in autistic preschoolers. Journal of Autism and Developmental Disorders
  • Vaccine exemptions for philosophical reasons, as opposed to medical or religious reasons, doubled in Texas between 2012 and 2018, and were concentrated in metropolitan areas. PLOS Medicine
  • Parents of children with intellectual disability have increased odds of mental health problems. The British Journal of Psychiatry

Science and society

  • Some families introduce their autistic children to local police and educate officers on atypical behaviors, such as easily misinterpreted responses to commands. The New York Times
  • A New York state legislator offers suggestions for families to inform and prepare their autistic children for the coronavirus pandemic. Times Union
  • New York state has approved street signs alerting motorists that a child with autism lives nearby. The Buffalo News
  • Two autistic writers share advice they would give their younger selves about fitting into a typical world. Psychology Today
  • The perceived social difficulties of people with autism have more to do with perception than reality. Scientific American
  • The shoe company Vans has released a new line of cushioned slip-on shoes designed for children with autism. CNN

Autism and the arts

  • Autistic artist Julius Trees Parrish is showing his abstract paintings at a gallery in Viroqua, Wisconsin. Vernon County Broadcaster
  • A documentary about an autistic teenager from Iceland who built the world’s largest Lego model of the Titanic premiered this week in Tennessee, near the museum that holds the model. WVLT
  • An artists market and coffee shop outside Detroit, Michigan, trains and hires people with autism and sells their art. Metromode

Originally published on Spectrum

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The hidden danger of suicide in autism

Nearly every Sunday since he was 7, Connor McIlwain had panicked about going to school the following day.

The noise of barking dogs or crying babies, the demands of school and the constant fear of being exposed to one of his phobias was a lot for Connor to handle. Diagnosed with autism at age 3, he would get so upset at school that sometimes he would run into the street; on at least one occasion, he narrowly escaped being hit by a car.

Connor’s mother, Lori McIlwain, recorded one of his Sunday-night tantrums when he was 10 to share with his doctor. “Poof me away. Poof me away,” Connor pleads in the audio clip, his voice strained. “I want to leave school forever. Throw me away forever; I really want to go away forever.”

The doctor offered suggestions on how to calm Connor and prescribed medication. Still, one day last year, Connor, then 17 and a sophomore in high school, became particularly distraught after a confrontation with a teacher. “We got the call from the school and picked him up,” McIlwain says. When he got home, he began trying to harm himself. “He told us, ‘I’m ready to die now,’ and said goodbye to us.”

Connor’s parents had often kept him home from school to prevent his dangerous meltdowns, but after this incident, they pulled him out of school for good. “Connor is a talented kid,” McIlwain says, but “no math or science was worth his life.”

Among people Connor’s age, suicide is the second leading cause of death in the United States, according to the U.S. Centers for Disease Control and Prevention: Approximately 6,159 people between the ages of 10 and 24 died by suicide in 2016. Suicide is the 10th leading cause of death across all age groups and one of just three leading causes of death that is on the rise, according to a June report. But it’s unclear what the statistics are for people with autism.

Studies over the past few years hint that suicidal ideation is more common in people with autism than in the general population, but the estimates vary so widely that some experts say they are meaningless. Still, there is some evidence that autistic people are especially vulnerable to suicide: One 2015 study that mined Sweden’s large National Patient Registry found that they are 10 times as likely to die by suicide as are those in the general population. (Women with autism are particularly at risk, even though men are more so in the general population.)

Even when signs of suicidality are apparent, clinicians may dismiss them.

“I think part of the problem is that we only see things we’re paying attention to,” says Jeremy Veenstra-VanderWeele, professor of psychiatry at Columbia University. “Until very recently, we didn’t expect to see it, so we didn’t see suicidality in patients with [autism]; it just wasn’t on our radar.”

Clinicians may wrongly assume that people on the spectrum don’t have complicated emotions, or may discount their outbursts, says Paul Lipkin, director of the Interactive Autism Network at the Kennedy Krieger Institute in Baltimore, Maryland. “These children feel a normal range of emotions as other children, but [they] don’t do it in a typical way, and they’re not necessarily taken as seriously because they have a wide range of emotions showing already,” he says. Doctors also misinterpret self-harm — a classic warning sign for suicide in the general population — as a part of autism.

All of that is beginning to change. Some teams are adapting tools to spot autistic people who are at risk of suicide and gain a sense of the scale of this problem. Many typical signs of suicidality — changes in sleep, appetite and social relationships — involve areas that are already challenging for these individuals. So “one can’t rely on these changes in this population,” Lipkin says. Instead, the researchers are looking at the interplay of known risk factors, such as depression, anxiety and bullying, in autistic people. And they are identifying risks unique to this population, such as social challenges, communication difficulties and a diagnosis of attention deficit hyperactivity disorder.

Tangled web:

Like Connor, many children with autism tend to perform well at school academically but struggle socially. They become isolated from their peers, which can lead to depression.

Children who struggle with social communication are at a high risk of suicidal behavior — even if they do not have autism — as are adolescents who have autism and symptoms of depression, according to a large study published in May in the Journal of the American Academy of Child and Adolescent Psychiatry. The researchers tracked 5,031 children in the Avon Longitudinal Study of Parents and Children, a large birth cohort in the United Kingdom. The children are either diagnosed with autism or show at least one of four autism traits: repetitive behaviors, social communication difficulties, pragmatic language problems or a lack of sociability. Those who have problems with social communication are the most likely to harbor thoughts of suicide at age 16, the researchers found.

“This is an urgent and obvious area for further research to try to prevent what we now recognize,” Veenstra-VanderWeele wrote in an editorial accompanying the results.

Other research shows that being bullied is common among young people with autism and may lead to depression and anxiety. In June, a study of the same U.K. cohort found that children with autism traits not only have more signs of depression than typical children at age 10 but that signs of depression persist for at least eight years, especially if a child has been the target of bullying. “Bullying explains 50 percent of the relationship between problems with social communication and a diagnosis of depression,” says lead investigator Dheeraj Rai, senior lecturer at the University of Bristol in the U.K. “We know that people with autism feel victimized after bullying; it’s very common and something many people and their families relate to us.”

Being bullied may also increase the risk of suicide in another way: by increasing aggression. In an unpublished study presented in May at the International Society for Autism Research (INSAR) meeting, a group in the Netherlands looked at experiences with bullying in 185 adolescent boys, 89 of whom have autism. The more victimization the teens faced, the more anger and fear they expressed. Compared with typical boys, though, autistic boys reacted predominantly with anger — a response that could lead to uncontrollable emotional arousal and raise the risk of suicide.

Intense rage can overtake 10-year-old Noah, who was diagnosed with autism at 4. “He’s a big love bug when he wants to be,” says his mother, Theresa McSpadden. But Noah has been bullied repeatedly, which makes him so upset that he acts out. He has twice attempted to harm himself and was hospitalized for suicidal ideation at ages 6 and 8.

When Noah was 9, another boy at his summer camp wouldn’t leave him alone. Noah told the boy to stop and complained to his camp counselor, but to no avail, McSpadden says. Finally, in a fit of anger, Noah threatened to stab the boy. The camp’s staff called the police — and then Noah’s parents. By the time McSpadden arrived, a police officer was on the scene; Noah was terrified and thought the officer was going to take him away. “When I told [the officer] Noah has autism, he told me to stop making excuses,” McSpadden recalls. She took Noah out of the camp immediately. He still makes threats to harm himself when he gets angry, she says, but “we are dealing with it at home right now, with his therapists and his psychiatrist.”

Monica Hatton’s autistic son Jake, 12, also struggles with anger and suicidality. “He turns into the Hulk,” Hatton says, referring to the superhero who transforms from a mild-mannered scientist into a rage-filled ogre. “[Jake] throws himself or does air-fisting and kicking; those are the moments I fear.”

Jake was diagnosed with autism when he was 3. At around age 7, he started saying, “I want to die; I hate myself,” his mother says. Jake would sometimes try to harm himself. Soon after the family moved from their home in Virginia to Connecticut, he spiraled out of control. “He went into an impulsivity rage and tried to grab a knife,” Hatton says. “He wanted to hurt himself; he wasn’t being aggressive towards me or someone else, only to himself. At these moments, he just needs big hugs. We tell him we love him. We cry with him and then the pressure cooker [inside him] releases the pressure.”

“Until very recently we didn’t expect to see it, so we didn’t see suicidality in patients with [autism]; it just wasn’t on our radar.” Jeremy Veenstra-VanderWeele

Hidden risks:

The hurts of bullying and social rebuffs may build up over time: Two out of three people diagnosed with autism as adults reported they have contemplated suicide at some point in their lives, according to a large study published in 2014. These adults “had been without support or understanding of autism for a long time,” says Sarah Cassidy, assistant professor of psychology at the University of Nottingham in the U.K.

For Cheryl, 61, getting an autism diagnosis early in life and learning strategies to address social communication problems might have made all the difference. “If I was diagnosed as a kid, someone could have helped me,” Cheryl says. (She withheld her last name to protect her privacy.)

She says she was ridiculed at school and didn’t have any friends throughout childhood. She was so afraid of being teased that she skipped eating lunch in the cafeteria. People told her she was smart, but she couldn’t converse with them. “When I tried to talk, it was like having my jaw wired shut — it was difficult to push the words out,” she says. “They made fun of me and were really cruel.” At age 15, she attempted suicide and was unconscious for days; she tried again at 17.

After she recovered, she often contemplated suicide again. Her social difficulties made it difficult to hold down a job or keep her marriages together. Nearly 40 years after her initial suicide attempt, Cheryl says she “looked out over all the devastation and waste spanning all the years of my life” and besieged her health insurance company with requests for help. Finally, at 56, she was diagnosed with autism. “Once I was diagnosed, it was such a tremendous relief. I could stop blaming myself for all my mistakes with people,” she says. “It gave me a new lease on life.”

Not everyone finds that kind of relief. Adults with autism face an elevated risk of suicide even after taking into account a number of known risk factors, such as unemployment, depression and anxiety, according to an unpublished study Cassidy presented at INSAR in May. “This suggests that there must be other autism-specific risk markers, which must be identified, that explain the increased risk of suicidality in this group,” Cassidy says.

One heavy burden for autistic people to carry is ‘camouflaging‘ — the attempt to hide their autism traits to fit in. Adults with autism who camouflage are eight times as likely to harm themselves as those who don’t, Cassidy’s team has found. Although many autistic adults do camouflage, the phenomenon is thought to be particularly common, and damaging, among women on the spectrum.

The effort involved in camouflaging contributes to anxiety and depression, compounding the risk of suicide. “I struggle to fit in,” says Richard Carmichael, 17, of North Carolina, who was diagnosed with autism five years ago. “I wear neutral-colored clothing; I try to appear normal at all times,” Richard says. Although he no longer feels suicidal, he says, he did for years.

“We increase our detection of suicidal kids when we screen for it.” Holly Wilcox

Better screening:

Suicide is notoriously difficult to predict, but clinicians have a window of opportunity. “For each completed suicide, there are 25 attempts,” says Tami D. Benton, psychiatrist-in-chief at Children’s Hospital of Philadelphia. More than half of all people who die by suicide visit a healthcare provider within one month of their death.

In light of that fact, the Joint Commission, a nonprofit accreditation board for U.S. hospitals, recommended in 2016 that hospitals screen all clients for suicide risk, regardless of the reason for their visit.

Screening for depression and suicide are particularly challenging in people with autism, says Lisa Horowitz, staff scientist and a clinical psychologist at the U.S. National Institute of Mental Health. “We have every reason to believe that people with autism have higher estimates of suicide risk [than the general population],” she says, but “this is a tricky population to understand.”

In 2008, Horowitz led a multisite study to develop the Ask Suicide-Screening Questions tool, which has four questions and takes about 20 seconds to complete. Nurses or doctors refer anyone who answers ‘yes’ to one or more of the questions for further assessment. The tool was designed for typical youth aged 10 to 24, but last year, Lipkin and his colleagues began using it in their outpatient clinics at the Kennedy Krieger Institute in Baltimore.

The team offered the test to 317 autistic people aged 8 and older over two months in 2017. Roughly one in three of these people declined to take the test. Among the remaining participants, however, 13.7 percent screened positive for suicide risk. Autistic adults and parents of children with autism were more likely to decline the screen than were children and teens on the spectrum, the researchers reported at INSAR. The parents who did agree to the screen, however, were more likely to disclose suicidal behaviors than their children were — perhaps in part because children with autism can have trouble expressing themselves.

Another team has used the screen in the pediatric emergency room of Johns Hopkins Hospital in Baltimore. From May 2013 to December 2016, 42 percent of all autistic children admitted to the facility screened positive on the test; of these, 71 percent did not present with suicidal ideation. “We increase our detection of suicidal kids when we screen for it,” says Holly Wilcox, associate professor of mental health and psychiatry at Johns Hopkins University. “It gives us a window of opportunity to help them if we can link them up with appropriate services. Oftentimes, the suicidal individual will feel relieved that they were asked and they could disclose their thoughts.”

Parents sometimes worry that asking children about suicide can put ideas into their head, Horowitz says, but in the typical population, that is unquestionably a myth. “There are at least four studies refuting that you can make someone think about suicide by asking them,” she says. Still, she says, “we should test [that] out in the autism population, because sometimes people with autism can get stuck on ideas.” Depending on what the studies find, scientists may need to create screening guidelines specific to this group. Horowitz is also working to adapt the screen for people with autism who have trouble with social communication and may not be able to answer the questions as readily as typical people do.

Of course, not everyone who screens positive based on the four questions is truly at risk. Any accurate picture calls for an in-depth assessment using a developmentally sensitive approach, says Roma A. Vasa, director of psychiatric services at the Center for Autism and Related Disorders at Kennedy Krieger.

Kennedy Krieger. “When asking questions, we need to take into consideration the individual’s social, cognitive and communication challenges,” Vasa says. Clinicians need to evaluate whether people with autism also have depression or anxiety, and whether they have experienced stressful events: “It is important to understand how they perceive their social world and whether they feel integrated or isolated,” Vasa says.

It may also be important to enlist parents’ help when dealing with an autistic child. “No one else can be attuned to the small change in a child’s behavior,” says Ruth Gerson, assistant professor of child and adolescent psychiatry at New York University. “I really encourage parents to trust their own judgment and take any concerns that they see in their child seriously.” If a child is thinking about or engaging in suicidal behaviors, parents should immediately take her to a mental health practitioner or clinician who knows her — or, failing that, to the emergency room, where they should make it clear that their child is on the spectrum.

McIlwain monitors Connor’s moods carefully. Sudden, abrupt noises, the sound of radios and televisions, and even certain words can throw Connor into extreme panic. His mother is so concerned for his safety that she tries to shield him from any triggers. In April, the McIlwains bought the house next door to make it easier to separate Connor from his 10-year-old sister, particularly when she plays with her friends or practices her violin.

Ultimately, they hope to build an addition onto their new home so they can all live together again. But having the extra space next door is already helping. Because Connor can find peace and quiet when he needs to, he has more good days than bad, and over the past two months, hasn’t once attempted to run into the street.

Instead of doing schoolwork, Connor spends his time writing about animated movies he has researched online. He has compiled two books, which his parents have had printed. “It gives him a sense of purpose,” his mother says, “and something to look forward to.”

If you or someone you know is having suicidal thoughts, help is available. Click here for a worldwide directory of resources and hotlines that you can call for support.

Corrections

A previous version of this article gave suicide as the third leading cause of death, rather than the second, among people Connor’s age; the exact numbers have also been revised. It also stated that Roma A. Vasa is director of psychiatric services at Kennedy Krieger; she is director of psychiatric services at the institute’s Center for Autism and Related Disorders.

Originally published on Spectrum

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Spotted around the web: Intellectual disability, chromosome 16, Greta Thunberg

Research roundup

  • In a study of more than 1,000 children in the United Kingdom with intellectual disability, 62 percent are boys, and 46 percent also have autism. BMJ Open
  • Transgender teenagers do not often disclose their gender identity to doctors. Journal of Adolescent Health
  • Adaptations to a standard cognitive assessment may help more people with intellectual disability participate in clinical studies. Neurology
  • Children of obese mothers may have elevated odds of having attention deficit hyperactivity disorder. The Journal of Pediatrics
  • Gender disparities in career productivity have increased as more women have entered academic STEM fields. PNAS
  • A rare mutation that leads to autism and intellectual disability may shed new light on the genes of chromosome 16. European Journal of Medical Genetics
  • Women who take antibiotics called macrolides during the first trimester of pregnancy may raise their chances of having a child on the spectrum.
    The BMJ
  • Nearly 20 percent of informal, unpaid caregivers say they are not in good health, according to a U.S. national survey. Morbidity and Mortality Weekly Report
  • Too few therapists who use applied behavior analysis with autistic toddlers keep a focus on playfulness and positivity. Journal of the American Academy of Child & Adolescent Psychiatry

Science and society

  • Abuse and neglect continue to plague former residents of Willowbrook, an institution for children with developmental disabilities that New York City officials closed in 1975. The New York Times
  • A culinary arts program in Miami, Florida, trains high-school students with developmental disabilities for food service careers and independent living. News 4 Jax
  • A Maryland legislator has proposed a new office to coordinate autism services and support for the state. The Bay Net
  • Addressing sources of stress during pregnancy may help prevent a range of emotional, behavioral and cognitive conditions in children. Biological Psychiatry
  • The U.S. Food and Drug Administration has approved a new genetic test for fragile X syndrome. FDA.gov
  • The U.K. has no standardized measures to assess the progress of schoolchildren with intellectual disabilities. Disability and Society
  • Malena Ernman describes what led to an autism diagnosis for her daughter, Greta Thunberg, in an excerpt from a new book written by the family.
    The Guardian

Autism and the arts

  • The University of Dhaka in Bangladesh offers an art camp for autistic children that celebrates ability and expression. The Daily Star

Originally published on Spectrum

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Spotted around the web: Scientific jargon, savant social skills, impostor syndrome

Research roundup

  • Self-injury is associated with suicidal behavior in autistic people who do not have intellectual disability. Molecular Autism
  • Specialized recruiting practices and committed supervisors are key for making workplaces more inclusive for people with disabilities. Journal of Vocational Rehabilition
  • A 10-step process can help neuroscientists model the biological processes they study. eNeuro
  • The use of jargon, even when it is defined, can lower a reader’s comprehension of scientific information. Journal of Language and Social Psychology
  • Mutations of a gene called CDC42BPB may be associated with autism and intellectual disability. American Journal of Medical Genetics
  • The American Academy of Neurology has issued a new guideline for sleep problems in children and teenagers with autism. Neurology
  • Autistic people with savant abilities tend to have stronger social skills than others on the spectrum. Scientific Reports
  • Older adults who have a close relative with autism experience more mental health challenges than those with no family ties to the condition. Autism Research
  • Parents of young adults with autism talk to their children about sexuality, but not about how the condition might affect sexual relationships. Journal of Autism and Developmental Disorders
  • Autistic and typical people modify their behavior to fit in socially, but those with autism do so more often. Molecular Autism
  • After 24 weeks of pivotal response treatment, a form of applied behavior analysis, autistic children vocally responded to their parents more often. Autism

Science and society

  • The Trump administration’s 2021 budget proposal includes cuts to nearly a dozen federal science and technology agencies. Science
  • A California-based company called Cognoa is distributing an app to screen for autism traits; diagnostic and therapeutic apps by the same company are awaiting approval by the U.S. Food and Drug Administration. Fierce Biotech
  • Fear and suspicion greet people who have epilepsy, writes an academic with the condition. Wellcome Collection
  • Colleges and universities seeking to increase diversity and inclusion should address ‘impostor syndrome’ by acknowledging it and providing support for students and new faculty. Science
  • Getting an autism diagnosis gave author Sarah Kurchak a new outlook and perspective on life. Vox
  • Emergency responders in in Saginaw, Michigan, have equipped their ambulances with autism sensory kits that include noise-cancelling ear muffs and fidget devices. MLive

Autism and the arts

  • Two autistic artists presented their work at a literary festival in Kochi, India. The Hindu

Publishing

  • A Virginia-based nonprofit technology organization called the Center for Open Science has created a measure for evaluating scientific research articles based on transparency and reproducibility. Center for Open Science

Originally published on Spectrum

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