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Archive for the ‘autism research’ Category

By Roseann Schaaf, PhD, OTR/L, FAOTA

schaaf-kids

Courtesy: Roseann Schaaf, PhD

Life is a sensory experience! We touch, hear, feel our muscles, move our bodies, taste, and smell and use vision to take in information from the environment, process and integrate it to act and interact as well as to learn and grow. Upwards of 80% of persons with Autism Spectrum Disorder (ASD) experience differences in the way they perceive and process sensory information. This impacts the ways in which they participate in functional tasks such as speaking, moving, eating, dressing, interacting with others, playing, learning and working. These sensory features are now part of the diagnosis of autism in the DSM5.

As an occupational therapist and a neuroscientist, my interest in the sensory features of ASD developed from working with children and families who often articulated how decreased sensory perception, integration or sensory sensitivities affected their everyday lives. As we worked together to improve independence and skill in daily life activities, success at school and to foster social engagement, it became clear that we needed to address these sensory differences in order to achieve their desired goals. We used the principles of sensory integration (Ayres, 2005; Bundy, et al, 2001) to target these issues and saw positive results! To share our knowledge and test this approach we received funding to write a manualized protocol (Schaaf & Mailloux, 2015), test its effectiveness, and publish our findings (Schaaf, et al, 2014). This study showed that children with ASD who received the occupational therapy using sensory integration treatment performed significantly better in functional skills and individual goals compared to controls.

schaaf-kids2

Courtesy: Roseann Schaaf, PhD

We are now conducting a larger, more comprehensive study and are seeking families who have a child with ASD aged 6-9.5 years who may want to participate in the study. This study is a collaboration with Thomas Jefferson University and Albert Einstein Medical Center and is located in the Bronx, NY. Children will receive a full diagnostic battery and then be randomized to one of the treatments (Sensory Integration or a behavioral intervention) and will receive 3 one-hour sessions/week for a total of 30 treatments. Parents must be willing to travel to Albert Einstein College of Medicine (1225 Morris Park Avenue, Suite 1-C, Bronx, NY 10461). Participants will receive a total of $250 and a report of the child’s performance and assessment data at the end of the study. Children have a 1/3 chance of being randomized into the “No Treatment” arm of the study but will still receive all assessments and stipends for participation.

The report will indicate whether the child performed below, at, or above average in the last round of the following tests:

  • Wechsler Abbreviated Scale of Intelligence (WASI-II)
  • Autism Diagnostic Observation Schedule (ADOS-2)
  • Sensory Integration and Praxis Tests (SIPT)
  • Assessment of Motor and Process Skills (AMPS)
  • Evaluation of Social Interaction (ESI)
  • Aberrant Behavior Checklist (ABC)
  • Restrictive and Repetitive Behaviors Rating Scale Revised (RBS-R)
  • Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT)
  • Pervasive Developmental Disorders Behavioral Inventory
  • Sensory Processing Measure (SPM)

If you know of any families who are interested, please have them contact the study coordinator at 718-862-1817 or sophia.zhou@einstein.yu.edu. Learn more about the lab here and the study here.

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By Meghan Miller, PhD

Kids playing with a tablet

More and more, researchers and clinicians are thinking about how advances in technology can be leveraged for interventions for children with autism. Tablets, computers, and video games have become increasingly available to children in their daily lives. At the same time, the American Academy of Pediatrics has put forth clear screen time guidelines for children, and many parents worry about their children spending too much time in front of a screen or with devices.

In the autism field, technology is providing promising avenues for early detection and intervention. For example, a recent study describes the use of mobile technology to screen for autism in young children. Others have developed apps and virtual reality systems through which treatments can be delivered. But what good are advances in technology-based interventions if parents aren’t interested in utilizing them?

Researchers at the UC Davis MIND Institute on the UC Davis Medical Center campus in Sacramento are conducting a study of parental perceptions of use of technology in treatment of impulsivity in 4 to 7-year-olds with autism spectrum disorder. Parents of 4 to 7-year-old children who have been diagnosed with autism spectrum disorder (ASD) can participate. Families can expect to complete of several online questionnaires about: Your family, your opinions about technology in treatment, and your child’s behavior. These questionnaires will take about 10 minutes of your time.

Take our survey: http://bit.ly/autismtechsurvey

Learn more here: https://studypages.com/s/technology-in-treatment-study-364017/

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The Centers for Disease Control and Prevention (CDC) today reported that 1 in 68 children is diagnosed with an autism spectrum disorder. This new estimate is roughly 30 percent higher than previous estimates reported in 2012 of 1 in 88 children. The number of children identified with ASD ranged from 1 in 175 children in Alabama to 1 in 45 children in New Jersey.

For the full press release, please visit our website.

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Mike Morse

10:15pm. It’s Friday night, and I have dozed off in a hallway of the Psychology Department at NYU, sitting in a chair across from a sign that says “Sleep Study in Progress – Please Be Quiet!” Behind the sign there is a little room where several Thomas the Tank Engine sheets and pillows mask its position as the waiting room in a research lab. I had just emailed a friend of mine to say that if all goes well, we’ll be finished by midnight.

In the Thomas the Tank Engine room, Dimitra is currently trying to get our son Yanni to sleep. We had just read the ironic news via text message that Yanni’s identical twin brother was sound asleep back at home. Vasili has already been in the Thomas the Tank Engine sleep room twice, and twice he failed to sleep deeply enough for the task that lies ahead for Yanni. That task is to put on earplugs, headphones, various other monitoring wires, turn on his back, and be perfectly still (ideally sound asleep) for up to 45 minutes while inside a noisy MRI machine.

Unlike many autistic children, Yanni and Vasili tend to be good sleepers. What makes me nervous about their ability to sleep in the machine is not the noise or the wires or the strange environment, but the need to lie on their backs. I’m not sure they can do this for five minutes without straining to roll over. I know this because for the past three weeks, we have been training Yanni for the big night. Every night after he goes to sleep, we have played an hour-long CD featuring the loud bleeps and grinding noises of the MRI. We have been making him increasingly uncomfortable for the experience, first with little putty earplugs, then with a cap, and finally with headphones. Yanni usually sleeps through the cacophony, but he almost always winds up on his stomach.

We have signed both of our sons into a study called “Functional Brain Imaging of Low Frequency Oscillations: Relation to Attention and Sensory Integration.” By comparing the brains of autistic children and the brains of neurotypical children, the researchers hope to understand more about the disability. We are excited to be part of this, not just because we are helping to contribute to knowledge, but because we get a thorough evaluation of the boys (not normally covered by insurance), which can be useful when negotiating with school boards.

Our bodies have different ways of marking the passage of time. Breathing and the heartbeat are the most familiar, but there are other ways too. There is also a rhythm to the activity in our brains, which fluctuates on a cycle of between 15 and 30 seconds in duration. I have always found it easier to concentrate while listening to music, and I wonder if music helps regulate this natural neurological rhythm. Our sons, like many autistic children, have difficulty staying focused on non-repetitive activities, and they are highly motivated by music. Sometimes, when they cry from distress, we can put them at ease simply by turning on the radio. The researchers hope to find out if this cycle looks different in the brains of autistic children and children with attention deficit hyperactivity disorder (ADHD). I note that it’s going to be a long night, and I’m helping to pass the time by thinking of a song I recently downloaded.

10:30pm. Dimitra peeks out the door and wakes me up to tell me that Yanni seems to be deeply asleep. We agree that the best way to test this is to call the research scientists in so that they can insert his earplugs. After the first earplug goes in, Yanni rolls over on his own, paving the way for the second earplug. He seems to be pretty out of it. We’re going to make the attempt!

Before we move Yanni, we have to take him out of his sleep-sack. Many babies sleep in these, which are essentially blankets that fit over a child’s shoulders with a zip down the middle. The zipper is metallic, and no metal is allowed in the MRI room. (Earlier, Dimitra and I had to answer a long list of low-probability questions, like whether we have worked as welders or had eye injuries involving metal.) We found a Canadian company that makes sleep-sacks for older children, since there is no way Yanni and Vasili would be able to stay under normal sheets and blankets overnight. The three of us then had to undergo a metal detector wand-examination, like the one you get after you set off the main metal detector in the airport. We passed.

We transfer Yanni to a bed-on-wheels and bring him through what I will call the control room, which overlooks the MRI room, and onward to the MRI itself. Four NYU scientists then grab the sheet under Yanni, count to three, and hoist him onto the table.

At this point, Yanni opens his eyes briefly, but still seems to be asleep. We wait two minutes, five minutes. Then the scientists start fussing around and prepare him for the scan.

11:07pm. It feels like it’s been forever since we brought Yanni into the scanning room. I’m worried that it’s taking too long, that he’s already been on his back too long, that there’s no way he will stay asleep in the scanner. Finally it’s time to try. I feel relief and excitement. After two failures with Vasili, maybe we will actually be out by midnight. Dimitra goes into the control room, and they start to slide Yanni into the scanner. Then, he opens his eyes again. We wait again. The eyes close. Then he stretches. Finally, Yanni starts grabbing at the kind of cage that surrounds his head. There’s no kidding ourselves. He’s awake.

I run to him as the researchers free him from all the wires and headphones. Yanni reaches to me and starts giggling. We go back into the Thomas the Tank Engine room and start again. This time, I bring the chair into the room and fall asleep on it there.

1:30am. We’re back in the MRI room. Yanni is asleep. This time, it’s going faster and smoother. He stays asleep as he goes into the scan. Dimitra and I move to the control room. Anyone who is a parent has the experience of wishing their kids asleep, worried about every little sign that the child might wake up. We experience the hi-tech version of this. A small camera in the MRI machine zooms in on a mirror on the head-cage that surrounds Yanni, reflecting an image of his eye.

Dimitra and I are looking at an extreme close-up of Yanni’s eye. Sure enough, it opens. Yanni doesn’t even look around. He’s probably still asleep. We watch as he slowly blinks until the eye closes again. Collective sigh of relief. Then it opens again, then it closes. We wait. Ok, it’s a go!

The MRI starts up, and Yanni is startled. Will he be able to go back to sleep this time? Our question is quickly answered by a loud and disconcerting alarm. After a microsecond of distress, I realize that this alarm simply means that Yanni is awake and the scan is aborted. I run in again and the researchers remove the head-cage that Yanni is now grasping for.

Yanni mutters something that the lead scientist strains to interpret. Did he say, “I don’t want it!” she asks me. No, I say. Yanni doesn’t have words. In point of fact, he sometimes does say words. Every

few days, he will whisper “cup” if he wants something to drink. He says “Daddy” but only when a therapist shows him pictures of me, not in reference to the actual me. The only time he strings two words together is when he presses his chin against Dimitra’s or my check, or nuzzles us behind the ear, and says “oooh, I love!” It’s incredibly endearing. But even then, I don’t think he knows that this is two words. There is no way he just said, “I don’t want it!” But it is clear he wants out.

We go back to the Thomas room. I abandon the metal chair and decide to sleep at the end of the couch where Dimitra is trying for the third time to get Yanni to sleep. Then something unexpected happens. I hear a door opening. But the front door is locked, and the scientists only come in from the control room after knocking. Someone has a key to the front door.

The door opens just a crack, and my first thought is that it’s an evil henchman from a Bond movie. I see a very tall man with wild, stringy hair, and a pockmarked, unsmiling face. He’s trying to make us out in the darkness. It occurs to me that my wallet, mobile phone, wedding ring, and whatever other valuables are between this figure and us. The door quickly closes, and this will remain a mystery for a little while. What if he opened the door when we weren’t there?

3:43am. This time the scientists knock and come in. They ask whether we are ready yet. As a matter of fact, we are. Dimitra tells them that Yanni is still wearing his earplugs from the last attempt. But when we check, we notice that there is some putty entangled on Yanni’s hair. We try to pull it off, but it won’t move. There’s a real danger we’re going to wake him up over this, so we leave it there. Then we realize that he is already wearing two earplugs, which means that we didn’t notice that this spare one was on his hair the last time. So, we leave it there again. This time, I carry Yanni straight to the scanner, forgetting the bed-on-wheels. Within about a minute, he’s in, and the scan begins. One of the scientists mutters under her breath that this is the way it’s supposed to work.

We’re all in the control room except for the lead scientist, who has her own set of headphones and is with Yanni in case he wakes up. We zoom in on his eye, and this time it’s not moving. For there to be enough data, Yannni needs to be in the scanner for at least eight minutes. One of the scientists signals (through the glass window) as each minute ticks by. Dimitra remains pessimistic. But Yanni blows through eight minutes.

It occurs to me that Yanni is like an explorer. We prepare him, suit him up and send him down a narrow corridor for exploration. Only he can do this. But what he’s exploring is not some cave but the inside of his own head. On a monitor, we can see his entire brain structure. It reminds me of the ultrasounds we saw when he was in the womb. We even get a few printouts for our records or just as keepsakes. Unlike regular explorers, Yanni has no awareness of what he’s doing. He’ll never know that we were looking into the architecture of his brain or that he is contributing to our understanding of what makes autistic people different. For that matter, Yanni doesn’t even know what autism is. He’s just a happy little 6-year-old who is not getting a normal night sleep at the moment.

Yanni stays in the machine for a full 45 minutes. They get every kind of scan they want. By a margin of five minutes we break the record for the latest night the researchers have had to endure in this project. Most kids finish by 1am or so, 3am at the latest. Somehow, we feel we are always the exception!

When it’s over, Yanni is still asleep. He could have done more, if there were anything more to scan. We get him dressed, finally get the three earplugs off of him and start to head home. On the way out, I see that our evil henchman is in fact the security guard. He probably just wondered if we were still there. We get in the car and make the hour drive to our home in the suburbs. On the way, I feel a kind of closure by playing the song that has been echoing in my head all night, and it makes the drive easier. At last, we are home and I get some satisfaction in getting into bed just before 6am, as if that represents some kind of milestone. I set the alarm for 8:15am and go to sleep.

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Beth A. Malow, MD, MS

Professor of Neurology and Pediatrics, Burry Chair in Cognitive Childhood Development, Vanderbilt University, Nashville, TN

            Vanderbilt Kennedy Center for Human Development, Nashville TN

Sleep is an essential component of a healthy life, like food and oxygen.  When we don’t sleep well, we feel irritable and have difficulty concentrating. With this in mind, imagine how a child on the autism spectrum feels and behaves without sleep (and how their sleep-deprived caregivers feel)!

Given how common sleep problems are, and how profoundly they affect children and their families,  it is timely to consider what we already know and what the future holds in our understanding of sleep in autism spectrum disorders (ASD).

What we’ve learned so far:  Sleep problems are common in children with ASD,  have many causes, and affect child and family functioning.  

Sleep problems are common in children with autism spectrum disorders (ASD) — ranging from 50-80% (Couturier et al., 2005; Krakowiak et al., 2008; Souders et al., 2009; Goldman et al. 2011), with similar rates across all ages and cognitive levels.  Insomnia, defined as difficulty falling asleep or staying asleep, is the most common sleep problem. Causes (Reynolds and Malow, 2011) range from medical conditions (e.g., gastrointestinal disorders, seizures, sleep apnea, attention deficit disorder, anxiety) and the medications used to treat these conditions (e.g., stimulants, antidepressants) to behavioral factors unique to the child with autism (for example, sensory sensitivities, difficulty transitioning to bedtime activities). Children, regardless of language abilities, may not understand parents expectations about sleep. Parents, in turn, may be too overwhelmed by other priorities and stressors to put a sleep plan in place. Proper identification of the causes of sleep difficulties in children with ASD is critical to successful treatment.

Behavioral and pharmacological treatments that improve sleep positively affect daytime functioning in the child and family (as reviewed in Malow et al., 2012) and may minimize the need for medications that target behavioral symptoms. For example, in 80 children receiving sleep education delivered by their parents (Malow et al., 2013), improvements in anxiety, attention, repetitive behavior, pediatric quality of life, and parenting sense of competence were also observed. While improving sleep does not necessarily change the core features of ASD, addressing  sleep concerns may ameliorate co-occurring medical conditions such as epilepsy or anxiety.  A well-rested child may also be more engaged in therapies that improve social interactions, and his well-rested parents may be empowered to advocate more effectively for his needs.

What we need to learn: What therapies for sleep are effective? Can we predict which treatments will work for subgroups of children?

We still have much more to learn about which therapies are effective for sleep in children with ASD. In particular, we need to understand the impact of treating co-occurring medical and psychiatric conditions (e.g., gastrointestinal disorders, anxiety) on sleep-onset and sleep-maintenance insomnia. For example, insomnia, anxiety, and GI disturbances may coexist in the same child, but whether one causes or contributes to the other coexisting conditions is unresolved. An alternative possibility is that insomnia, anxiety, and GI disturbance share an underlying mechanism. One possible mechanism may be autonomic dysfunction (Kushki, 2013), with sympathetic hyperarousal and parasympathetic underarousal.

While behavioral treatments for sleep have shown promise in ASD and other neurodevelopmental disorders (Malow et al., 2013; Weiskop et al., 2005 and others reviewed in Vriend, 2011), determining  subgroups of children who are most responsive to these therapies are needed. For example, children with short sleep duration and frequent night wakings (in whom medical causes of sleep disturbance have been excluded), or those with limited verbal skills, may have a differing treatment response to behavioral interventions than children with sleep onset delay. This differing response may result from biological causes, or alternatively, a poorer response to the intervention. In those requiring medications, we need to determine which medicines are safe and effective for a variety of sleep problems (sleep onset delay, night wakings). Supplemental melatonin has been studied to a greater extent than any other medication for sleep in ASD, but large well-controlled studies have been limited (Rossignol, 2011). Genetic factors, including those related to melatonin synthesis, may also be important (Melke, 2008) in determining which child may respond to a specific therapy.

Another subgroup of  individuals with ASDs worthy of study are adolescents and young adults. My colleagues at Vanderbilt are studying sleep patterns this population at baseline (Dr. Suzanne Goldman, funding from Autism Speaks), and with behavioral treatment (Dr. Whitney Loring, funding from Organization for Autism Research).

The area of sleep and autism is ripe for continued research, in terms of causes, treatments, and overlap with many other areas, ranging from medical co-occurring conditions to genetic and other biological markers to treatment trials. Being vigilant (pun intended) to the role of sleep in autism research has high potential to advance our knowledge of autism subtypes as well as our toolbox for real world treatments that impact people with ASD and their families.

 

References

Couturier JL, Speechley KN, Steele M, Norman R, Stringer B, Nicolson R. (2005) Parental perception of sleep problems in children of normal intelligence with pervasive developmental disorders: prevalence, severity, and pattern. J Am Acad Child Adolesc Psychiatry 44: 815-822.

Goldman SE, Surdyka K, Cuevas R, Adkins K, Wang L, Malow BA. (2009) Defining the sleep phenotype in children with autism. Dev Neuropsychol. 34(5), 560-73.

Kushki A, Drumm E, Pla Mobarak MTanel NDupuis AChau T, Anagnostou E. Investigating the autonomic nervous system response to anxiety in children with autism spectrum disorders. PLoS One. 2013;8(4):e59730. doi: 10.1371/journal.pone.0059730. Epub 2013 Apr 5.

Krakowiak P, Goodlin-Jones B, Hertz-Picciotto I, Croen LA, Hansen RL. (2008) Sleep problems in children with autism spectrum disorders, developmental delays, and typical development: a population-based study. J Sleep Res. 17(2):197-206.

Malow BA, Byars K, Johnson K, Weiss S, Bernal P, Goldman SE, Panzer R, Coury D, Glaze DG. A practice pathway for the identification, evaluation and management of insomnia in children and adolescents with autism spectrum disorders. Pediatrics. 2012;130 Suppl 2:S106-24.

Malow BA, Adkins KW, Reynolds A, Weiss SK, Loh A, Fawkes D, Katz T, Goldman SE, Madduri N, Hundley R, Clemons T. Parent-Based Sleep Education for Children with Autism Spectrum Disorders. J Autism Dev Disord. 2013 Jun 11.

Melke J, Goubran Botros H, Chaste P, Betancur C, Nygren G, Anckarsater H, Rastam M, Stahlberg O, Gillberg IC, Delorme R, Chabane N, Mouren-Simeoni MC, Fauchereau F, Durand C M, Chevalier F, Drouot X, Collet C, Launay JM, Leboyer M, Gillberg C, Bourgeron T. Abnormal melatonin synthesis in autism spectrum disorders. Mol Psychiatry 2008; 13(1):90-98

Reynolds AM, Malow BA. Sleep in Children with Autism Spectrum Disorders. In: Owens J, Mindell JA, Eds. Pediatric Clinics of North America 2011; 58(3):685-98.

Rossignol D, Frye R. Melatonin in autism spectrum disorders: a systemic review and meta-analysis. Developmental Medicine & Child Neurology 2011; 53(9), 783-792.

Souders MC, Mason TB, Valladares O, et al. Sleep behaviors and sleep quality in children with autism spectrum disorders.  SLEEP 2009;32:1566-1578.

Vriend, J. L., Corkum, P. V., Moon, E. C., & Smith, I. M. (2011). Behavioral interventions for sleep problems in children with autism spectrum disorders: Current findings and future directions. Journal of Pediatric Psychology, 36(9), 1017–1029.

Weiskop S, Richdale A, Matthews J. Behavioural treatment to reduce sleep problems in children with autism or fragile X syndrome. Dev Med Child Neurol. 2005;47(2):94-104.

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By Marcela De Vivo, mother of a child with a severe disability and freelance writer who works with Oltarsh law firms.  She writes on immigration law, health and special education law and inclusion. 

For any family, providing the best care and support for an autistic child presents numerous challenges. In a family of immigrants, dealing with autism can be overwhelming, from diagnosis to treatment. In particular, immigrants may lack access to a secure healthcare network, making solutions seem inaccessible. Here are some things to think about:

pic 1

Image Courtesy of Christian Briggs/Wikimedia Commons

Diagnosis and denial

Within some cultures, there simply is no frame of reference for a problem such as autism, so immigrants can sometimes not see their children’s symptoms or resort to inappropriate coping mechanisms.

Signs of autism, such as poor social skills or repetitive physical ticks, can be registered as stubbornness or a cause for shame for those who lack the education to understand that their child has a mental disease. As a result, parents might punish their child or pretend that the symptoms are not there. To make matters worse, immigrant parents who recognize that there is an obvious problem can be misinformed about the implications of autism. Some families, for example, think that if they are “caught” with an autistic child, they could be deported (which, in some countries, is not an unreasonable fear).

In some isolated cases, parents have failed to notice any symptoms whatsoever. In others, frustrated fathers have abandoned their autistic children, in part because they did not have an adequate concept of mental illness and may even think the problem is their fault.

They may keep the child out of the public eye, for instance, not wanting to incite neighborhood gossip. Among immigrant mothers, being a single parent can be even more challenging when rearing a special-needs child, since she may lack the documentation, status or money to provide appropriate therapy.

Cultural barriers to treatment

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Image Courtesy of Tim Vickers/Wikimedia Commons

Since autism is an affliction that affects our relationship to language and communication, getting treatment for the diagnosis is difficult in a multi-lingual household. If a specialist must rely on a translator to interact with a child—as well as the parents—he or she may miss some of the nuances of the child’s dialogue. A lack of understanding of idiom or regional body language might cause an inaccurate diagnosis or stand in the way of therapy.

On top of strictly linguistic barriers that may exist between doctors and immigrant families, there can be cultural barriers as well.

On the doctor’s side, the fact is that he or she may be making all judgments based on a body of knowledge that does not reflect many world cultures.  While over six million culturally diverse children in the U.S. have communication disorders, such as autism, almost all of studies done on autism have been conducted with European-American families

It is a strong likelihood that the data a doctor relies on may have a cultural skew. Furthermore, many American doctors may not have an understanding of certain taboos and customs of communication, potentially offending or confusing the family and making open dialogue more improbable.

Finally, many cultures don’t have a true concept of mental illness; this often makes it difficult to provide solutions. Islamic parents, for example, may think that not to raise their child as they would a normally-functioning child may be an insult to their god, therefore, they forsake treatment.

To overcome these difficulties, immigrant families must make sure language and cultural differences are minimized. The ideal scenario would include a doctor who is a native speaker or highly fluent in the child’s language. As this is not always possible, it’s essential to have a translator who is not only appropriately bilingual, but also savvy to concepts in mental health and the mores of the child’s culture.

Its important that at least one person is an insider within both cultures to make sure that the diagnosis is not based on a misunderstanding and that the reasons for treatment can be explained in context. With adequate language and cultural mediation, autism need not be yet another unneeded stressor for immigrants.

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By Matthew Maenner

Early identification of autism spectrum disorders (ASD) continues to be an important public health objective.  Research has shown that ASD can be reliably identified in children by around 2 years of age, and public health campaigns promote the detection of developmental “early warning signs”  that may indicate ASD.  Despite these efforts, there is a considerable gap between the age ASD is detected in clinical research, and the age at which children are identified as having ASD in typical community settings.  Previous population-based studies have shown that the average age of ASD identification in the community is less than ideal (at 5.7 years), and there is little information about whether these “early warning signs” lead to earlier ASD identification in everyday practice.

Our new study uses data from the CDC Autism and Developmental Disabilities Monitoring (ADDM) Network to answer two questions about how ASD behavioral features are described by community professionals and whether these behaviors are associated with the age of ASD identification. The ADDM Network identified 2,757 8-year-old children that met the surveillance case definition for ASD (based on the DSM-IV-TR criteria) in 2006.

616 combination

First, we examined the frequency and patterns of diagnostic behaviors that lead to a child meeting the diagnostic criteria for ASD (based on the DSM-IV-TR).  There are many different ways to meet the diagnostic criteria for ASD.  For example, there are 616 combinations of the 12 behavioral criteria that fulfill the minimum number (6) and pattern needed for “Autistic Disorder” alone.  Although there was considerable variability between individuals with ASD, boys and girls had similar patterns of documented behaviors, as did black and white children overall.  Among the 2,757 children, the most commonly documented behaviors were impairments in emotional reciprocity (90%), delays in spoken language (89%), and impairments in the ability to hold a conversation (86%).  The least frequently documented behaviors were lack of sharing enjoyment or interests (49%) and lack of spontaneous or pretend play (57%).

Our second question was whether particular ASD behaviors (such as those highlighted by the CDC’s “Learn the Signs” campaign) are actually associated with earlier ASD identification in typical community settings.  We found that the both the total number and types of diagnostic behaviors in a child’s record were strongly associated with the age that they were identified as having ASD.  Children with all 12 behavioral symptoms were diagnosed at a median age of 3.8 years of age, compared to 8.2 years for children with only 7 of the 12 behaviors.  Additionally, children with documented impairments in nonverbal communication, pretend play, inflexible routines, or repetitive motor behaviors tended to have an earlier age at ASD identification than children who did have these features in their records.  Children with impairments in peer relations, conversational ability, or idiosyncratic speech were more likely to be identified as having ASD at a later age.

These findings give us a clearer understanding of how ASD diagnoses are made in the community, and help inform efforts to maximize early identification and intervention among children with ASDs.  It may be more difficult to detect ASD at an early age among children with fewer symptoms, or symptoms that are most apparent at later ages (such as getting along with peers or conversational ability). A recent national telephone survey reported an increase in ASD prevalence among young teenagers, and parents were more likely to describe their later-diagnosed children as having “mild” ASD.  It’s possible that increased awareness and intensified screening for ASD could lead to more individuals being identified at both earlier and later ages. Strategies to improve early ASD identification and interventions could benefit by considering the manner in which individuals may meet ASD criteria.

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