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Understand&Manage the Challenging Behaviors of Autism

Online Health Chat with Dr. Aletta Sinoff and Dr. Thomas W. Frazier

April 5, 2011


Introduction

Cleveland_Clinic_Host: Autism spectrum disorder (ASD) affects 1 in 110 children in the United States This life-long developmental disorder affects development and learning, and significantly influences how children understand and relate to the world. Our team at Cleveland Clinic Children’s Hospital Center for Autism believes all children deserve the opportunity to laugh and play, and to become healthy, happy, and productive adults. We provide specially designed diagnostic, treatment, and education services to help children reach those goals. We also offer consultations and conduct training and research to improve the lives of children with autism and their families.

Aletta Sinoff, PhD, is Director of Cleveland Clinic Children’s Hospital Center for Autism. During her prior tenure as Assistant Director, Dr. Sinoff played a central role in the design and growth of the Center’s state-of-the-art, intensive, early intervention program serving young children with a diagnosis of autism spectrum disorder and their families. She was also instrumental in the development of speech, language, and communication diagnostic and therapy services for both outpatient and school-based programs.

Dr. Sinoff is a Speech/Language Pathologist and a board certified behavior analyst. She completed her undergraduate and doctoral degrees in speech and hearing therapy at the University of the Witwatersand, Johannesburg, South Africa. She also completed a certificate program in applied behavior analysis for Special Education at Pennsylvania State University.

Dr. Sinoff is a member of several professional organizations, including Applied Behavior Analysis International, and American Speech and Hearing Association. She has presented both locally and nationally on a variety of topics pertaining to ASD. She has two adult sons, one of whom has autism.

Dr. Sinoff’s clinical and research interests involve the application of behavior analytic teaching methods to best practice in education and treatment of individuals diagnosed with ASD across the lifespan. She is currently involved in research analyzing the outcomes and language development trajectory of children across the autism spectrum following intensive early intervention. Her clinical specialty is the analysis and treatment of language and social-communication disorders. She trains parents in implementing behavioral teaching methods to support and facilitate their children’s learning and independence.

Thomas W. Frazier, PhD, is a Staff Member with Cleveland Clinic Children’s Hospital Center for Autism and Center for Behavioral Health. He is the research director at the Center for Autism and also is jointly appointed in the Genomic Medicine Institute and in the Cleveland Clinic Lerner College of Medicine at Case Western Reserve University.

Dr. Frazier received his undergraduate degree Magna Cum Laude in psychology from John Carroll University in University Heights, Ohio, and completed both his master’s and doctoral degrees in clinical psychology at Case Western Reserve University. His post-graduate training includes an internship in clinical neuropsychology at Ann Arbor VA Medical Center and one year of a fellowship in clinical neuropsychology at Cleveland Clinic’s Department of Psychiatry and Psychology, Section of Neuropsychology.

Dr. Frazier’s primary clinical interests include the assessment and behavioral treatment of individuals with ASD. Dr. Frazier also specializes in the assessment and differentiation of pediatric bipolar disorder, ADHD, and other disruptive behavior disorders.

Cleveland_Clinic_Host: Welcome to our Online Health Chat with Dr. Aletta Sinoff and Dr. Thomas Frazier. We are thrilled to have them with us today to talk about autism.


Autism

Bananak: My grandson exhibits behaviors that I believe are indicative of autism (i.e., does not respond to his name, has regular tantrums in public). My daughter views this as the terrible twos and does not see anything wrong. How can I address these concerns with my daughter without upsetting her? What resources can I share with her?

Dr__Thomas_Frazier: Addressing this with your daughter is critical, and although you may experience some strain in your relationship -- at least temporarily -- it is important to let her know you have concerns. Many times parents are the last to know. A child who does not respond well to his name, who gets upset easily for no obvious reason or because there were changes in routine or environment that would not otherwise upset a child, and shows problems with social communication -- including gesturing, using language both functionally and socially, such as referencing other people verbally and non-verbally -- are more likely to have autism. The earlier this child can get to a provider for evaluation the better. Your pointing this out may be the impetus your daughter needs. I would present to her that even if her child is found to not have a problem she may learn things that can help her with these behavioral issues you are describing.

She should contact the Cleveland Clinic Center for Autism or another psychology or autism-specific provider who can do a thorough diagnostic evaluation. Our phone number is (216) 448-6440.

bethann: What are the types of cognitive behavioral therapy and how is it applied in high functioning autism cases?

Dr__Thomas_Frazier: The main treatment for individuals with very high functioning autism (HFA) spectrum disorder who otherwise do very well academically is social thinking training. This is a cognitive behavioral method that teaches children with HFA to think about expected and unexpected social behavior, such as how to avoid unexpected social behaviors in changing situations, such as when the topic changes. This approach teaches kids how to self-monitor their behavior, and pro-social behaviors are reinforced. These programs work best when there is an initial teaching/training component and then a generalization component, where children can continue to demonstrate these skills with typically developing peers.

An important aspect of these programs is the use of language as a mediator for thinking about other perspectives. This includes learning language such as "expected" and "unexpected" behavior and how to interpret non-literal language such as saying, "Don't sweat the small stuff," as many children with HFA do not naturally learn to interpret this language and instead interpret non-literal language concretely.

parter: What will happen if I do not ‘encourage’ my 13-year-old son’s obsessive compulsive behavior? He was diagnosed with autism at an early age. His obsessive compulsive behavior did not start until a few years ago and is getting steadily worse.

Dr__Thomas_Frazier: Obsessive/compulsive behavior is a part of autism and should be treated in many cases. Oftentimes, the best treatments are to not allow the compulsive behavior, but rather re-direct or prompt an alternative behavior that can then be rewarded and reinforced. When left alone, obsessive compulsive behavior in autism often worsens. I would suggest working with a provider who is experienced in behavior therapy for autism.


Concerns

Natwallace: I want to know if the MMR vaccine is, in fact, related to autism, despite all the controversy that I've been reading that says it is not.

Dr__Aletta_Sinoff: No. It is likely not related to autism. There may be specific cases where an immune challenge has influenced a child's behavior, but it is not likely that MMR or any other childhood vaccination plays any meaningful role in the increased prevalence of autism.

rzienty: What impact does eating fish during pregnancy have on the incidence of autism? Do mercury levels play a role in the cause of this condition?

Dr__Thomas_Frazier: It seems like eating fish does not increase the risk of autism. There are other pregnancy-related factors that may be important, but eating fish is not one. Obviously, it is important to maintain safe (low) levels of mercury, but this is a non-specific risk factor and is not specifically associated with autism.

Important risk factors are increased parental age. For example, older fathers (age>40) have a substantially increased risk, possibly as much as five times greater, for having a child with autism.

concerned: How can I trust that autism is not a result of the MMR vaccine? There has been so much back-and-forth on this topic. Can you share some trusted resources that will help set the record straight and ease my concerns?

Dr__Thomas_Frazier: There are several large epidemiologic studies that have shown no association between MMR vaccination and autism prevalence. When thimerosal was originally the concern with vaccinations, it was removed and yet autism prevalence continued to rise.

The main problem with the back and forth you describe is that one side is strictly based on fear and the other side is based on science. Unfortunately, I don't expect this to change because fear is highly motivating to people and science is not. However, science is what should dictate practice.

I can't provide PDFs of the articles or reviews but you can easily find reference to these through Google. Here are some examples:

Richler J, Luyster R, Risi S, Hsu WL, Dawson G, Bernier R, Dunn M, Hepburn S, Hyman SL, McMahon WM, Goudie-Nice J, Minshew N, Rogers S, Sigman M, Spence MA, Goldberg WA, Tager-Flusberg H, Volkmar FR, Lord C. Is there a 'regressive phenotype' of Autism Spectrum Disorder associated with the measles-mumps-rubella vaccine? A CPEA Study. Journal of Autism and Developmental Disorders. Apr 2006;36(3):299-316.

Hertz-Picciotto I, Green PG, Delwiche L, Hansen R, Walker C, Pessah IN. Blood mercury concentrations in CHARGE Study children with and without autism. Environmental Health Perspectives. Jan;118(1):161-166.

Schechter R, Grether JK. Continuing increases in autism reported to California's developmental services system: mercury in retrograde. Archives of General Psychiatry. Jan 2008;65(1):19-24.

The other important thing to consider is that, in many cases, autism symptoms could be identified in children prior to vaccination through video recordings/home movies. Also, autism has a very strong genetic basis and this does not leave much room for major environmental influences that are independent of genetic effects.


Diagnosis

jacobi: I’ve recently seen a documentary on autism. When they described the characteristics, I see a lot of them in my 3-year-old son. Yet there are some characteristics not present. How is autism diagnosed, and are there different degrees? Are there certain characteristics that a child must have in order to be diagnosed as autistic?

Dr__Thomas_Frazier: Autism is a spectrum. Many kids have some symptoms but not others, and even then the symptoms will sometimes change over time. The key symptoms are social communication weaknesses (decreased reciprocal back and forth conversation, chatting, use of gestures and other non-verbal communication) and the presence of some restricted, repetitive behavior, such as having very fixed, specific interests that exclude the possibility for other social interests and that the child perseverates on topics or repetitive sensory and motor behavior. This might include staring at objects, hand flapping, repetitive jumping or spinning, or becoming upset when things change or when a transition is needed. Symptoms in these two areas are characteristic of autism and should be evaluated.

sams_son: What are the most common behaviors to look for in a child who may be autistic?

Dr__Thomas_Frazier: In young children, common signs are not wanting to be held, difficulty with orienting or responding to their name, not socially and reciprocally smiling, making poor eye contact, not using gestures to make requests or to communicate, not following other people but rather being more interested in objects or non-social aspects of the environment, showing repetitive or unusual sensory behaviors, such as staring at shiny bright lights or flapping hands, staring at hands, and/or repetitive jumping/spinning.

In older children (age >3), important signs are difficulties with engaging in back and forth reciprocal conversation, not showing interest in others even when they are sick or hurt, and showing an extreme interest in non-social information, such as numbers, historical events, etc. to the exclusion of other social activities.

cdjohns1: My granddaughter is enrolled in a speech-therapy class. My daughter was recently told that my granddaughter "showed some signs of autism." To me, a layman, that statement could mean most anything. What would be your take on that statement?

Dr__Thomas_Frazier: That statement would make me want to take the child to a professional who is able to evaluate whether or not the symptoms of autism are present. In this situation, getting an evaluation is critically important because the provider may be correct that there are autism symptoms, and this often requires a more comprehensive early intervention strategy than speech therapy alone.

zfernandez: What is the importance of parental involvement in an early diagnosis of autism?

Dr__Thomas_Frazier: Parental involvement is critical in the early diagnosis of autism. Parents know their child best, and it is the parent who takes the child to the physician/medical team to seek the diagnosis. Since autism is a behavioral diagnosis, the parent’s description of the child's development and the child's responses to a variety of experiences conveys to the medical team the full behavioral spectrum from which a determination can be made.

In terms of treatment, the partnership between the parents and the professionals treating the child is critical in terms of influencing the outcome of treatment.


Triggers

james_c: What sights and sounds are most likely to cause sensory overload or confusion in the classroom? How can I help my son's teachers become aware of these distractions?

Dr__Thomas_Frazier: This very much depends on the child, and careful observation of his behavior in that setting can help to better understand what sensory experiences are upsetting or frustrating.

Many kids do not do well when the classroom is louder, when there are loud or unpredictable noises, or with certain sounds that are shrill and abrupt.

I would have a frank conversation about this issue with your son's teachers. Letting the teachers know that sensory sensitivity is a part of your child’s developmental difficulties can be helpful to them. I would want to involve the teachers in understanding which sounds affect him so they can take ownership in making a difference. This approach is often better than dictating to them what sounds are a problem or trying to force them to change their behavior.

ryleigh_s_: My daughter gets upset quite often when our schedule varies even the slightest degree. The tantrums in public are uncomfortable and concerning. How can I teach her flexibility?

Dr__Thomas_Frazier: It is important for you to learn about behavior therapy because this can serve as a method for teaching her greater flexibility. In general, if your child gets upset because she doesn’t like the demand to transition that is being placed on her, it is important to not allow her to escape or avoid this demand without following your directive. Any allowance to avoid will reinforce her desire to escape these situations in the future. Over time (often many times of making sure your child has to follow through and make the transition), the tantrums will improve.

In these situations, it is important to give a clear directive and then require the transition. In other settings, such as in the grocery store, it is important not to allow your child to escape, even though this can be quite embarrassing. Instead, make sure she continues to make the transition or to do the activity until the upset is over. Then provide reinforcement for being calm and doing what it is you asked her to do. In the end, you will be most effective at this if you have spent time learning behavior therapy and working with a provider who can help you with this process.


Additional Disorders

monal: My 9-year-old seems to be having more and more problems with anxiety lately. It is starting to affect him at school. What do you suggest in helping him deal with anxiety, and at what point would you recommend putting him on medications? I would like to avoid that as long as possible!

Dr__Aletta_Sinoff: Depending upon your child's level of language comprehension, Social Stories by Carol Gray is a useful technique. This involves creating a simple story, a sentence or two per page with accompanying photograph, identifying the anxiety-provoking scenario and illustrating an adaptive response to it. For example, for a child who is afraid of attending birthday parties, the story would illustrate that parties occur, that one may go for a short time, and that they can be fun.

Transitions in a school setting are frequent reasons for anxiety among children with autism. Using a visual schedule depicting the sequence of the day,and providing prior announcement of impending transitions are both helpful strategies.

Regarding medications, I recommend consulting a child psychiatrist who has experience treating children with autism. I suggest voicing your hesitation regarding medication. The psychiatrist can then develop a relationship with you and your child, and obtain baseline levels of anxiety. When and if you and your physician decide to do a medication trial, this will be based on a solid foundation of understanding.

saraj: Is depression common in autistic children? How do we, as parents, help are 15-year-old deal with this along with everything else?

Dr__Aletta_Sinoff: Yes. Depression is common in children with autism, and if present, will typically become evident during adolescence or young adulthood. It may be difficult to determine in individuals who are non-verbal or minimally verbal. I recommend you work in close partnership with your child's educators to determine whether there is a change in behavior that could be attributed to depression. Children with autism, just like the rest of us, may respond to changes in their environment or unexpected events. The child’s inability to verbally express his/her emotions should not be confused with the ability to experience emotions such as depression.

If you suspect depression in your child, consult your pediatrician or a child psychiatrist to determine if a course of medication is warranted. I have seen children with autism respond well to medication treatment for depression.


Siblings

sobad: Are there any programs for siblings of autistic children that help them deal with the issues that are associated with their autistic sibling? My 6-year-old daughter is having a hard time dealing with her 9-year-old brother, who is autistic.

Dr__Thomas_Frazier: I am not aware of any groups specifically for autism, but we are interested in starting a sibling group at the Cleveland Clinic Center for Autism. You may also want to check out one of the books for siblings of individuals with autism. Just go to Amazon and search.

I would also consider individual or family therapy with a therapist, typically a clinical psychologist, who can help your daughter better understand and manage the feelings she has about her brother and his behavior.

GracieP: My oldest daughter has a difficult time dealing with my autistic son's behavior. What kind of support can I find for her?

Dr__Aletta_Sinoff: Sibshops (Sibling Support Project) is an excellent program for siblings who have a family member with a disability. It usually consists of weekly meetings with other siblings led by a coordinator.

If Sibshops is held in your location, I highly recommend this. Also consider contacting families in your school/church who have a child with a disability and neurotypical children to arrange a get-together with your daughter.

Finally, individual consultation with a psychologist who has experience in this area can be extremely helpful for siblings to express themselves freely and to develop strategies for coping.


Daily Tasks

momof2autisticsons: How can we begin to teach our 7-year-old non-verbal autistic son to brush his teeth? He has never held his toothbrush, won't spit (so we still have to use baby toothpaste), and just generally shows no interest whatsoever in doing it himself. We're beginning to wonder if we will be brushing his teeth for the rest of his life when we know that he's physically capable. It's frustrating.

Dr__Aletta_Sinoff: Establish a routine for tooth brushing that is at the same time of day in the same place (in the bathroom). A technique called “chaining” is used to teach the sequence of skills that make up tooth brushing from getting the toothbrush and toothpaste, opening the toothpaste and placing it on the brush, right through to rinsing off the brush and putting the items away after brushing. Complete tooth brushing with your child in a hand-over-hand manner. If he does not tolerate this, keep the brushing portion of the routine brief. Make it clear to your son prior to tooth brushing, what he can "earn" for completing the task, even with you doing it with him. If he completes part of the task independently such placing the cap on the toothpaste, allow this to occur and provide the necessary guidance to the next part of the sequence.

Take photos of a few of his favorite choices. When he picks one, place it on the mirror in the bathroom. Set the target for tolerating brief tooth brushing so that he will receive his favorite choice. It is important to help your son understand that the less preferred activity of tooth brushing will, if tolerated, be followed by something that he enjoys.

As your child becomes fluent with accepting your hand-over-hand support, start fading your support toward the end of the tooth brushing session. Systematically fade your support at earlier points in the chain.

Spitting should be taught as a separate activity from tooth brushing. Teach this in the bathroom, at the sink and model this for your child. Initially, do one 'spit' at a time and give the child his favorite choice as reinforcement.

mom_of_jake: How do I potty train my autistic son?

Dr__Aletta_Sinoff: It depends on the age and functioning of your son. If he is a pre-schooler with some ability to respond to simple directions, set aside a long weekend to commence potty training as this is a big commitment, it takes patience and is time-consuming, but well worth it.

Identify your son's most favorite activity and save this for the times he successfully urinates in the potty. Refrain from giving him access to this activity at any other time. Increase his intake of fluids to the degree that this is reasonable i.e., have his favorite drink accessible and offer it frequently. Commence the day with your child in underpants and a shirt and play in close proximity to the bathroom. Set a timer for 5 or 10 minutes at which time you state "time to go potty" and set your child on the toilet. If you use different terminology at home, then use what is comfortable for your family. To the extent possible he should sit for 2 minutes (set timer). If he urinates, mark your data sheet with a 'c' to indicate correct, praise your child with a high level of enthusiasm, and immediately give him his chosen activity (once he is off of the toilet). If he does not go, mark your data sheet 'i' for incorrect. If your child does not go, do not make comments to this effect. After the 2 minutes, take him off of the toilet and suggest he goes back to play.

If he has an accident, mark the data sheet 'a' for accident. Do not respond or reprimand your child if he has an accident. Remember that he is not doing this personally to upset or offend you. It is important that you use a neutral tone of voice. Repeat the cycle until your child has no accidents for 2 successive days. And then increase the timer in 5 or 10 minute increments. As your child’s success increases, remember to let him know how proud you are of him.


Resources

pleasehelp: My son recently was diagnosed with autism. What resources are available to me to begin to understand autism and how to help my son?

Dr__Aletta_Sinoff: Resources depend upon your geographical location. However, no matter where you are I suggest you read Let Me Hear Your Voice by Catherine Maurice. This describes a parent’s journey from diagnosis through treatment. This book provides a clear explanation of good early intervention and the critical elements of the type of teaching that young children with autism need to learn. It also outlines the author's feelings and emotions as she travels this journey with her child.

A couple of good Web sites include: autismspeaks.org. This provides a 100-day checklist that is very useful. Another excellent source is researchautism.org (organization for autism research).

It is critical to locate a good speech/language pathologist who has experience working with young children with autism and begin therapy as many times a week as is possible. This should include a significant component of parent training.

dodo: Are ‘social’ classes helpful for children with high functioning autism when in social situations?

Dr__Thomas_Frazier: Social thinking programs can be very helpful for kids with high functioning autism spectrum disorders. Key elements of these programs are not only teaching "skills," such as how to say hello and introduce yourself or how to ask questions of peers, but also how to think about social interaction and what is an expected or unexpected social behavior.

Michelle Garcia Winner has written extensively on this topic, and her book is the focus of our Social SPIES program. You may want to search for her work online.


Research

nystrom: What is the latest research being done, both on the cause of and treatment of autism?

Dr__Thomas_Frazier: Many researchers are studying the underlying genetic and biochemical contributions to autism. Autism is a highly genetic disorder with >90% of identical twins being concordant for autism. The most promising work has been identifying genes involved in autism and linking these genes to specific biological pathway abnormalities. In fragile X, which is associated with autism, this type of research is already leading to promising biological treatments.

At the Cleveland Clinic, we are studying one set of genes involved in how brain cells grow and develop. As part of this study we are also studying brain structure changes in autism.

We are also studying a medicine to help folks with autism who also show significant aggression and irritability, as well as behavioral treatments for younger and older children.

If you are interested in participating in the genetic biochemical and brain structure study or in a treatment study please contact (216) 448-6440.


General Questions

gita: Is Asperger’s disorder totally different from autism or is it just another form of autism?

Dr__Thomas_Frazier: In 2013 the new diagnostic manual will include Asperger's disorder as part of autism spectrum disorder. The research supports including Asperger's disorder as part of the autism spectrum, and there are a variety of reasons for this. However, the main one is that individuals with Asperger's have the same core characteristics as individuals with Autism - social communication weakness and restricted, repetitive behaviors.

guryon: Can a 16-year-old with high functioning autism get a driver's license?

Dr__Thomas_Frazier: It really depends on your 16-year-old’s overall cognitive profile and his or her ability to learn the task. There are driving programs and simulators that you can access that will help you and your child learn more about his or her potential to drive. I would also suggest a neuropsychological evaluation to help determine fitness to drive.

I don't know who runs the programs off the top of my head but if you search you are likely to find them. Keywords would be driving simulation, driving training for individuals with disabilities, etc. You may want to contact the Bureau of Motor Vehicles for more information.

moondog: Does a gluten free/casein-free diet really have an impact on behaviors associated with autism spectrum disorder? Are there any other diets/supplements to consider?

Dr__Thomas_Frazier: So far, the studies have not supported the use of a casein/gluten-free diet. Instead these diets seem to have no long-term effect on children with autism and can be problematic in that many children with autism already have restricted diets that are not as healthy for them as we would like.

There are no supplements yet demonstrated to help individuals with developmental disorders beyond melatonin for sleep difficulties. I would meet with a pediatric neurologist, developmental pediatrician, or other physician before deciding to use supplements, as they are not all benign and can have some side effects.


Closing

Cleveland_Clinic_Host: I'm sorry to say that our time with Dr. Sinoff and Dr. Frazier is now over. A huge thank you to Drs. Sinoff and Frazier for taking the time to answer our questions about autism.

Dr__Aletta_Sinoff: This has been a wonderful opportunity to connect with all of you. We appreciate your interest in autism and your wonderful questions. Living with autism spectrum disorder is enormously challenging. However, we have many more answers today than 10 years ago, and with your commitment, our wish is that our families have a strong quality of life.


More Information

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