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Bee Johnson
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Learning when to treat repetitive behaviors in autism

by ,  /  10 November 2015
The Experts:

Clare Harrop

Postdoctoral Fellow, University of North Carolina at Chapel Hill

Connie Kasari

Professor, University of California, Los Angeles

Autism spectrum disorder involves two core deficits: problems with social communication and restricted and repetitive behaviors. Although therapies for improving critical social communication skills have advanced rapidly, researchers are less clear on whether and when to intervene for restricted and repetitive behaviors.

This conundrum arises from a considerable lack of understanding about why these restricted and repetitive behaviors (RRBs) develop, the mechanisms underlying them and how to manage them. Some of the behaviors may have hidden benefits for people with autism. For example, hand flapping can help children with autism cope in new or anxious situations or better communicate when they are frustrated.

As a result, uninformed attempts to halt these behaviors may not be successful or welcomed by individuals with autism. Instead, we should work with families to find a happy medium between acceptance and change. This approach is likely to include thinking about alternative ways to fulfill the need that prompted the original behavior.

RRBs are present in various neurodevelopmental disorders but are considered a hallmark feature of autism. The term defines a wide range of idiosyncratic actions, including stereotyped movements, repetitive self-injury, compulsive or ritualistic behaviors, insistence on sameness, repetitive language, and unusual or intense preoccupations.

These behaviors fall into two categories. So-called ‘lower-order’ RRBs typically include repeated motor actions such as hand flapping and sensory manipulation of objects such as peering at objects from different angles. ‘Higher-order’ RRBs are more cognitive in nature and include routines, rituals, insistence on sameness, and narrow and intense interests.

Poor progress:

These behaviors occur early in individuals with autism and are often red flags for clinicians and researchers1. Studying the emergence of RRBs in children with autism can be difficult, however, given that some of the behaviors are similar to those present in typical early development. Repeating certain actions with toys and uttering the same sounds or words over and over again is a normal part of infancy and toddlerhood and considered vital for developmental progress. Although these early behaviors look similar in children with autism and typical children, in those with autism they do not decline as quickly and interfere much more.

Determining how to deal with these behaviors in autism is crucial because they can impede learning and restrict social opportunities. Studies have found that an increased rate and severity of RRBs can track with poor outcome in a wide array of skills, such as language and play development2.

RRBs can create social problems as well. Intense interests often interfere with a child’s ability to socialize, because other children cannot relate to them, leading to further isolation.

Motor RRBs can be even more concerning to parents and caregivers from a social perspective than defined social deficits are, as these unusual actions can be obvious and off-putting to others. A boy who talks insistently about road signs may be viewed as quirky and a girl who does not make eye contact considered shy. But a child who is flapping his or her hands or rocking back and forth may really stick out as odd, and caregivers feel the stigma associated with these behaviors.

What’s more, caregivers are often at a loss for how to deal with these behaviors in the moment. Attempts to redirect the child can make the situation worse, as children can become agitated or aggressive and occasionally hurt themselves or others.

Caregivers report feeling stressed by these behaviors and unsure how best to respond to them. Unfortunately, clinicians cannot confidently prescribe an intervention, as there are few established ones for these behaviors3, 4. Common strategies include blocking, redirecting and teaching alternative behaviors. These techniques can be successful in the short term but can also have negative repercussions, such as self-injury, and are not proven long-term solutions.

Anxiety relief:

People with autism often feel differently from those who care for them, however. At the 2015 International Meeting for Autism Research in Salt Lake City, Utah, Robyn Steward, a visiting research associate at The Centre for Research in Autism and Education in London and a person on the spectrum, presented her research on why adults with autism ‘stim,’ or engage in self-stimulating motor RRBs such as twirling, hand flapping or rocking.

According to Steward, adults with autism may stim to calm themselves down and relieve anxiety. When such behaviors involve self-injury, she said, intervention is often necessary. But in other cases, rather than try to stop this behavior, the best strategy is to find other ways for that individual to relieve stress, she says.

Steward says motor RRBs can also serve to communicate excitement or frustration. In those cases, any attempt to diminish these behaviors should be accompanied by alternative ways to communicate those same emotions.

In some instances, certain higher-order RRBs, such as an intense interest in Japanese anime or the video game Minecraft, can facilitate social interaction instead of hindering it, allowing a child with autism to find common ground with her peers. In some cases, narrow interests have helped people with autism develop social communication skills and even find employment opportunities.

Coaching caregivers:

With young children, teaching caregivers to implement an intervention shows the most promise, particularly for addressing social-communication behaviors. So far, only a few small studies have taught caregivers to address RRBs in their children5, 6. In a study we conducted this year, we sought to establish a baseline for interventions by determining how caregivers respond to RRBs naturally, without any training7.

We looked at the ways in which caregivers react to their child’s RRBs while they play together. We found that caregivers naturally ignore about half of these behaviors but try to curtail others that seem to affect their interaction with their child.

In particular, caregivers do not acknowledge some of the most obvious motor or verbal repetitive behaviors, such as repeating words or hand flapping. Yet they frequently redirect a child when she is engaged in visual self-stimulatory behaviors such as the close inspection of objects or repetitive play with an object — for example, pressing buttons over and over. Knowing how caregivers instinctively respond gave us an excellent starting point for thinking about the best ways to train parents to help their children.

Earlier this year, researchers from Newcastle University in the U.K. tested a short-term 16-hour caregiver training program they call Managing Repetitive Behaviors5. The researchers taught 25 caregivers how to identify triggers for RRBs and when and how to intervene. Another 20 caregivers received the intervention at a later date and were the comparision group. The researchers delivered the training in a group setting, allowing for opportunities for support and sharing of experiences and strategies between caregivers. Caregivers identified target RRBs to work on and videotaped the behavior at home.

Following the training, caregivers rated how confident they felt in dealing with these behaviors, and researchers examined how well the caregivers were able to redirect and potentially reduce their child’s RRBs.

In this small sample, the researchers reported that the trained caregivers were more confident than the untrained ones about their ability to redirect RRBs effectively at the right time. The participants also rated the training as useful and practical. The caregivers reported that their child’s behaviors improved, but the researchers did not see as much of an effect. That may be because of a placebo effect or because caregivers consider many more situations across the child’s life than researchers have access to.

To know when and how to intervene with RRBs, we need to better understand why these behaviors occur as well as how they may change over time. We need large controlled studies to evaluate how well evidence-based interventions for autism generally affect the behaviors. Those that focus on social skills and communication rarely include measures of potential change in RRBs.

Sometimes, RRBs subside on their own. Others, however, are more entrenched and require targeted intervention. Some persist throughout adulthood despite attempts to ameliorate them at a younger age. In the end, Steward may be right that it’s best to leave them alone until we can provide definitive answers and proven interventions.

Connie Kasari is professor of human development and psychiatry at the University of California, Los Angeles. Clare Harrop is a postdoctoral fellow at the University of North Carolina at Chapel Hill.

  1. Elison J.T. et al. J. Am. Acad. Child. Adolesc. Psychiatry 53, 1216-1224 (2014) PubMed
  2. Honey E. et al. J. Autism Dev. Disord. 37, 1107-1115 (2007) PubMed
  3. Harrop C. Autism 19, 662-672 (2015) PubMed
  4. Boyd B.A. et al. J. Autism Dev. Disord. 42, 1236-1248 (2012) PubMed
  5. Grahame V. et al. J. Autism Dev. Disord. 45, 3168-3182 (2015) PubMed
  6. Boyd B.A. et al. J. Autism Dev. Disord. 41, 1330-1341 (2011) PubMed
  7. Harrop C. et al. Autism Epub ahead of print (2015) PubMed

4 responses to “Learning when to treat repetitive behaviors in autism”

  1. Elissa Leonard says:

    Repetitive behaviors are found in children with B12 deficiency. Every child with signs and symptoms should receive testing– B12, Homocysteine, Methylmalonic Acid. Failure to do so results in substandard and harmful medical care. Left untreated for even a few months, B12 deficiency will permanantly harm a growing brain.

    B12 deficient mothers may be asymptomatic and pass B12 deficiency on to their children. At one hospital, when checked, 48%of pregnant women had untreated B12 deficiency.

    RESULTS: “our data show a high frequency of vitamin B(12) deficiency in delivering female (approximately 48% of examined pregnants).” Scolamiero E, et al. Clin Biochem. 2014.

    RESULTS: “Thirty-nine percent of subjects had plasma vitamin B-12 concentrations <258 pmol/L"
    Framingham Offspring Study Tucker KL, et al. Am J Clin Nutr. 2000.

    In the age of "folic acid only" fortification of the food supply and prenatal vitamins, anemia from B12 deficiency is corrected but neurological damage is allowed to progress.

    You cannot rule out B12 deficiency with a normal blood count. You cannot rule out B12 deficiency with a normal serum B12. You must test the toxic metabolites that build up when you have suboptimal B12– homocysteine and methylmalonic acid.

    Sincerely, Elissa Leonard

    J Pediatr. 1992 Nov;121(5 Pt 1):710-4.

    Long-term neurologic consequences of nutritional vitamin B12 deficiency in infants.

    Graham SM1, Arvela OM, Wise GA.

    A review of the clinical findings in six infants with nutritional vitamin B12 deficiency seen during the last 10 years was undertaken and an attempt made to obtain long-term neurologic follow-up. There was a consistent clinical pattern in vitamin B12-deficient infants; irritability, anorexia, and failure to thrive were associated with marked developmental regression and poor brain growth. Two of the four patients who qualified for long-term review had a poor intellectual outcome. Although early response to treatment is satisfying, the long-term consequences of nutritional vitamin B12 deficiency in infants emphasize the need for prevention or early recognition of this syndrome.

    Vitamin B-12 and Perinatal Health1,2,3

    Julia L Finkelstein4,5,*,

    Alexander J Layden4, and

    Patrick J Stover4

    +Author Affiliations

    4Division of Nutritional Sciences, Cornell University, Ithaca, NY; and

    5St. John's Research Institute, St. John's National Academy of Health Sciences, Bangalore, India

    ↵*To whom correspondence should be addressed. E-mail:


    Vitamin B-12 deficiency (<148 pmol/L) is associated with adverse maternal and neonatal outcomes, including developmental anomalies, spontaneous abortions, preeclampsia, and low birth weight (<2500 g). The importance of adequate vitamin B-12 status periconceptionally and during pregnancy cannot be overemphasized, given its fundamental role in neural myelination, brain development, and growth. Infants born to vitamin B-12-deficient women may be at increased risk of neural tube closure defects, and maternal vitamin B-12 insufficiency (<200 pmol/L) can impair infant growth, psychomotor function, and brain development, which may be irreversible. However, the underlying causal mechanisms are unknown. This review was conducted to examine the evidence that links maternal vitamin B-12 status and perinatal outcomes. Despite the high prevalence of vitamin B-12 deficiency and associated risk of pregnancy complications, few prospective studies and, to our knowledge, only 1 randomized trial have examined the effects of vitamin B-12 supplementation during pregnancy. The role of vitamin B-12 in the etiology of adverse perinatal outcomes needs to be elucidated to inform public health interventions.

    Indian J Psychol Med. 2011 Jul-Dec; 33(2): 203–204.

    doi: 10.4103/0253-7176.92051

    PMCID: PMC3271502

    Obsessive Compulsive Disorder as Early Manifestation of B12 Deficiency

    Maryam Valizadeh and Nasim Valizadeh1

    Vitamin B12, folate, and homocysteine levels in patients with obsessive–compulsive disorder

    Authors Türksoy N, Bilici R, Yalçıner A, Özdemir YÖ, Örnek I, Tufan AE, Kara A

    Received 13 May 2014

    Accepted for publication 10 June 2014

    Published 9 September 2014 Volume 2014:10 Pages 1671—1675


    Nuray Türksoy,1 Rabia Bilici,2 Altan Yalçiner,3 Y Özay Özdemir,2 Ibrahim Örnek,4 Ali Evren Tufan,5 Ayşe Kara6

    1Simurg Psychiatry and Psychotherapy Center, Istanbul, 2Erenköy State Hospital for Psychiatric and Neurological Diseases, Istanbul, 3Düzen Laboratories, Istanbul, 4Florence Nightingale Hospital, Istanbul, 5Department of Child and Adolescent Psychiatry, Abant Izzet Baysal University, Bolu, 6Bakırköy State Hospital for Psychiatric and Neurological Diseases, Istanbul, Turkey

    Abstract: It is known that elevated serum homocysteine, decreased folate, and low vitamin B12 serum levels are associated with poor cognitive function, cognitive decline, and dementia. Current literature shows that some psychiatric disorders, mainly affective and psychotic ones, can be related to the levels of vitamin B12, folate, and homocysteine. These results can be explained by the importance of vitamin B12, folate, and homocysteine in carbon transfer metabolism (methylation), which is required for the production of serotonin as well as for other monoamine neurotransmitters and catecholamines. Earlier studies focused on the relationship between folate deficiency, hyperhomocysteinemia, and depressive disorders. Although depressive and anxiety disorders show a common comorbidity pattern, there are few studies addressing the effect of impaired one-carbon metabolism in anxiety disorders – especially in obsessive–compulsive disorder (OCD). This study aimed to measure the levels of vitamin B12, folate, and homocysteine specifically in order to see if eventual alterations have an etiopathogenetic significance on patients with OCD. Serum vitamin B12, folate, and homocysteine concentrations were measured in 35 patients with OCD and 22 controls. In addition, the Structured Clinical Interview for the Diagnostic and Statistical Manual for Mental Disorders, Fourth Edition, Text Revision, Yale–Brown Obsessive Compulsive Scale, Hamilton Rating Scale for Depression, and Hamilton Rating Scale for Anxiety were conducted for each patient. It was found that vitamin B12 levels were decreased and homocysteine levels were increased in some OCD patients. Homocysteine levels were positively correlated with Yale–Brown compulsion and Yale–Brown total scores. In conclusion, findings of this study suggest that some OCD patients might have vitamin B12 deficiency and higher homocysteine levels.

  2. EJ says:

    “Studies have found that an increased rate and severity of RRBs can track with poor outcome in a wide array of skills, such as language and play development.”

    That is a value judgement based on perceptions of what is an acceptable form of communication. There are cases of non-verbal autistics who were deemed “low functioning” (such as Carly Fleischmann) but who when let loose on a keyboard turned out to be very intelligent and able to articulate themselves intelligently using that format of communication. You wouldn’t judge a mute person to need forcing to learn to speak. Play development is a personal thing. What suits one person might not another and you need to stop making these comparative judgements by neurotypical standards.

    All stims and repetitive behaviours should be considered acceptable unless harm to self or others is occurring.

    Having said that, I do agree with Elissa Leonard below, who says tests should be done for vitamin and mineral deficiencies that can be addressed. If a behaviour is as a result of something in the body being out of kilter then it should be treated. Autism can be connected with MTHFR, methylation issues and mast cell issues and these must be investigated. But of course that involves spending money and in the UK they want to do everything as cheaply as possible and rarely join up the dots.

  3. Laura Hansen Cannon says:

    What about asking the autistic child, teen, or adult? Experts shouldn’t assume they know more or have exclusive knowledge about what is right. If you asked my son, he would say he likes his stims. He enjoys sameness; it helps him feel safe. I would think it is imperative to let the subject decide for him or herself. Perhaps, a survey of autistics’ opinions would be helpful rather than privileging the “expert’s” perspective.

  4. Jackie McMillan says:

    Our repetitive behaviours have three purposes.
    1) To express stress and/or pain and ask for help
    2) To release a high nervous system “charge”
    3) To provide sensory “white noise” so surroundings aren’t as overwhelming
    Prompting or demanding behaviour change just frustrates us, and does nothing to address the underlying causes creating our need for repetitive behaviours.
    100% of autism studies about inflammation found a high correlation between the two. However, the most common and worst source of both stress and pain is emotional, a result of unhealthy social dynamics.
    Reshape society for empathy & compassion, treat the inflammation and other sources of physical pain for autistics (malnourishment, nerve impingement, impaired detox, immune overwhelm, and unresolved trauma) and autistics’ need to “stim” just gradually drops away.

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