Cleveland_Clinic_Host: Welcome Dr. Frazier and Dr. Knapp, and thank you for being with us today. It is wonderful that you could join us to discuss autism. We look forward to an interesting chat concerning autism today. Let's begin with the questions!
sassylady: How early can autism be detected?
Speaker - Julie Knapp, PhD: Autism can be detected quite early, as early as 15 months in some children. Some parents even report they had concerns of atypical development before the child’s first birthday.
kidcare: I am a daycare provider, and I suspect that one of my kids may be autistic. Is there anything I should be aware of or do differently?
Speaker - Julie Knapp, PhD: If you suspect that a child in your classroom may be autistic, I encourage you to talk with the child’s parents and share your concerns with the parent. It is important that this child be evaluated by the child’s pediatrician, and possibly by a specialist in autism spectrum disorders as early as possible.
molliebrown: What are the most important signs/symptoms to look for in a young child?
Speaker - Julie Knapp, PhD: Early signs that might indicate autism include resistance to being cuddled, poor eye contact, preference to play alone, lack of showing objects to another or lack of directing an adult’s attention to an object, inconsistent response to their name being called, an unusual attachment to objects, and/or lack of using gestures to communicate, such as pointing or waving. It is also important to notify your pediatrician of concern if your child is not meeting typical developmental milestones, such as saying first words between 12-15 months, using spontaneous two-word phrases to communicate by 24 months, engaging in some social play such as peek a boo by 12 months, or imitating others by 18 months.
sassylady: Who should I see in order to have my child evaluated?
Speaker - Julie Knapp, PhD: Typically, the first person parents talk to about their concern is the child’s pediatrician. Often, pediatricians do not diagnose autism, but rather refer the child to a specialist. Specialists who provide evaluations and diagnosis may include a psychologist who specializes in autism spectrum disorders, a neurologist, or a developmental pediatrician.
Fitz: I've talked to my pediatrician about my concern that my child doesn’t seem to be talking as much as other kids. He recommended to 'wait and see' and acted like this could be normal. Should I wait until my child is going to school or what should I do?
Speaker - Julie Knapp, PhD: I would not "wait and see." I recommend that you request an appointment with a psychologist specializing in autism spectrum disorders, a neurologist, or a developmental pediatrician as soon as you can. It is important to identify autism early and begin treatment as early as possible.
batty: Can autism symptoms change over time? Will a child outgrow it?
Speaker - Thomas Frazier II, PhD: Autism symptoms can change over time in some children. For example, some children will show problems with social interaction and communication with other people but will not show many odd behaviors initially. Then later these behaviors can increase in frequency and intensity. The opposite can occur as well. Also many high functioning children show improvements in their ability to interact socially and appropriately, particularly with behavioral treatment. The vast majority of children do not outgrow autism. With treatment a small percentage of children can have a significant reduction in their symptoms and may no longer meet the diagnostic criteria. However, the vast majority of children experience lifelong symptoms and functional problems associated with autism. With treatment, particularly early treatment(<3 years of age), some children can learn to function semi- or completely independently.
Immunizations and Autism
newtonm: There is a controversy about vaccines and autism. Do vaccines cause autism?
Speaker - Thomas Frazier II, PhD: The available scientific evidence indicates that vaccines do not cause autism. The recent finding of a girl who experienced a negative reaction to a vaccine with autism symptoms resulting was due to a pre-existing metabolic disorder that was made worse by the vaccine. This is very different then what most people mean when they are asking whether vaccines cause autism. If vaccines do play a role, it is in making symptoms worse or more noticeable as would any immune challenge. The data on this will continue to be collected but given the strong genetic basis of autism, it can be said that it is unlikely that any environmental event, including vaccinations, plays a big role for the majority of cases of autism.
Miss_Lily: What about mercury in the vaccines?
Speaker - Thomas Frazier II, PhD: The available epidemiological data indicates that thimerosol and mercury do not contribute to autism. In California the rate of autism continued to increase at a similar rate after thimerosol was taken out of the vaccinations. I think it will be useful to study the effects of any immune challenge on children with autism. There may be a subset of children with autism for whom an immune challenge worsens symptoms. This would be extremely important information for researchers and clinicians to have.
Miss_Lily: I have a younger child who currently needs her vaccinations? Do you recommend that she get the vaccinations or should the shots be broken up?
Speaker - Thomas Frazier II, PhD: Children should receive their vaccinations. As stated previously the available data indicates that vaccines do not cause autism. If your provider offers shots to be broken up this would be a way to make sure that your child gets their vaccinations and at the same time for you to feel more comfortable that the immune challenge is not too much for your child to handle. In other words, breaking up the shots may help you to feel better about this process.
Autism and Pregnancy
keles1780: Are there any types of preventive measures that pregnant woman or women who think they might become pregnant do?
Speaker - Thomas Frazier II, PhD: Stay healthy, eat right, and follow your doctor's orders. There are no specific steps you can take other than those mentioned. Just try to be as healthy as you can.
Autism and other Disorders
wileyoldlady: What is the difference between Autism and Aspergers?
Speaker - Julie Knapp, PhD: Both autism and Asperger’s syndrome are considered a pervasive developmental disorder. The primary difference between these two is that children with autism have language impairment whereas children with Asperger’s do not. However, it should be noted that those children with Asperger’s may have difficulty with the pragmatics of language, which can include eye contact, initiating conversations, or maintaining conversations. In addition, children with Asperger’s Syndrome do not have deficits in cognitive skills, whereas some children with autism may have cognitive deficits.
wileyoldlady: Is autism the same thing as autism spectrum disorder or ASD?
Speaker - Julie Knapp, PhD: Autism is part of the Autism spectrum. Autism Spectrum Disorders (ASD) include autism, Aspergers, and Pervasive Developmental Disorder, NOS.
ladyofthenight: Is there a link between premature babies and autism? What about autism and ADHD?
Speaker - Thomas Frazier II, PhD: This is not my area of expertise. To the best of my knowledge pre-maturity is associated with a range of negative outcomes including psychological problems like ADHD, autism, etc. As stated previously, ADHD symptoms occur frequently in kids with autism roughly 40-70% of kids with autism have significant ADHD symptoms. However, I suspect that really the ADHD and autism symptoms are both resulting from the same brain impairment that happens to be generating both types of symptoms. In other words, its not two negative things happening to the child at once. It is one negative thing that is currently described using two diagnostic labels.
conniec: Children with autism appear to have a higher than normal risk for certain co-existing conditions. Why is this?
Speaker - Thomas Frazier II, PhD: This is true, although in many cases the co-existing conditions are likely simply part of the original problem. In other words, the cause of the autism symptoms is likely also driving the other symptoms. For example, a genetic change that leads to autism symptoms may also lead to problems with sustaining attention, hyperactivity, or controlling impulses. These are ADHD symptoms and approximately 40-70% of children with autism spectrum disorders experience significant ADHD symptoms. However, I would not think of it as a separate condition but rather as part of the original genetic problem. Similar co-existing conditions occur with GI problems, sleep problems, aggressive behavior, etc.
ene: What treatment works best with children with autism?
Speaker - Julie Knapp, PhD: I encourage all parents that I work with to be critical and smart consumers regarding treatment for their child. There are many treatments available to treat or educate a child with autism; however, not all of these treatments have been proven to be effective. One treatment that has been proven to work with children with autism is Applied Behavioral Analysis, or ABA. ABA is a treatment technique designed to teach children how to learn both academically and behaviorally. Intervention targets deficits in receptive and expressive language skills and social interaction skills, as well as problems with non-functional behaviors.
momof3: My son is being tested for autism soon. How will he be tested and what are some questions I should ask during this procedure?
Speaker - Julie Knapp, PhD: Testing for autism typically involves interviewing the parents, observing the child, and possibly engaging the child in play. In addition, parents and teachers are often asked to complete a variety of rating forms designed to elicit more information regarding the child’s behaviors and development. Questions that you may want to ask are in regards to specific places in your area that your child can receive treatment. This would involve a variety of possible treatments, such as ABA, speech therapy, occupational therapy, psychopharmacology, education, and social skills training.
nyberg: My child has recently been diagnosed with autism. I contacted several providers in my area looking for treatment. I am not sure which treatment I should use. What is the difference between ABA, TEACCH, SCERTS, and RDI? Which do you recommend?
Speaker - Julie Knapp, PhD: ABA is a treatment technique designed to teach children how to learn both academically and behaviorally. ABA is grounded in behavioral therapy and relies on prompts and reinforcement. Intervention may target language skills and social interaction skills, as well as problems with non-functional behaviors. This method is data driven. TEACCH arranges a child’s physical and social environment using visual supports so that the child can more easily predict and understand daily activities and respond in appropriate ways. The SCERTS Model favors having children learn from other children who are considered good social and language models. This therapy is done in an inclusive setting. The goal of RDI is to improve the child’s social skills, adaptability and self-awareness. Children begin work in a one-on-one setting with a parent. When they are ready, they are matched with a peer at a similar level of relationship development. In time, additional children are added to the group to help the child form and maintain relationships with various children in different contexts. I recommend that you follow a treatment approach that is evidenced-based and for me, that method is ABA.
maddiegirl: My child is nonverbal. My speech therapist recommended using PECS. Do you think this is a good idea?
Speaker - Julie Knapp, PhD: PECS is a learning system that allows children with little or no verbal ability to communicate using pictures. The child is taught how to exchange a picture for an object. Eventually, the child is taught to distinguish between pictures and symbols and use them to form sentences. Verbal reinforcement is a major component and verbal communication is encouraged. By using a communication system such as PECS, the child learns to get his wants and needs met more appropriately, and this may reduce overall disruptive behaviors. So yes, I think this is a good idea for children with autism who have limited language.
nystrom: Is it true that the same treatment works for all children diagnosed with autism?
Speaker - Julie Knapp, PhD: It is my opinion that behavioral therapy, such as Applied Behavior Analysis works for all children with autism. There are other treatments out there that may be effective for some, but not all children. If you are considering one of these other treatments, it is important to talk with your child's doctor to consider the advantages and disadvantages of the approach.
jen4: Do you recommend dietary treatment, such as gluten free/casein free diet?
Speaker - Julie Knapp, PhD: This alternative treatment involves the removal of gluten and casein from a diet. Gluten is a protein found in barley, rye, and wheat, whereas casein is a protein found in dairy products. The theory behind this diet is that proteins are absorbed differently in children. There have not yet been sufficient scientific studies to support this theory, but at the same time, there have been no studies suggesting that this treatment is ineffective. Some families report that dietary elimination of gluten and casein helps to regulate bowel movements and sleep activity. I recommended that all families first and foremost engage in treatment that is based in evidence as being effective, such as ABA. After this type of treatment has been started, if the family has more time and resources and they want to engage in alternative treatments, it is their choice. If you chose to try this dietary treatment, I recommend that you make sure your child is receiving adequate nutrition. Dairy products are the most common source of calcium and vitamin D in children.
sassylady: Are there other kinds of treatments that could come to the forefront in the coming months and years?
Speaker - Thomas Frazier II, PhD: I think it is likely that in the coming years there will be new treatments. However, in order for new treatments to be useful, they need to be based on the causes and mechanisms of autism. In other words, for a treatment to be effective it needs to be based on the biological processes that are impaired in autism. In order to create these new treatments we need to learn more about the biology and genetic causes of autism. Fragile X is a good example. A substantial percentage of children with the Fragile X mutation experience autism symptoms. We obviously know the genetic cause of Fragile X now. We are also learning much more about the biological pathways that are disrupted by this mutation. With this knowledge researchers have devised treatments for these pathway abnormalities and tested these in mice. In the mouse model of Fragile X two research groups have found that their respective treatments are very effective for reducing the symptoms of the disorder. To my knowledge, these treatments are then going to be tested in humans to examine whether they are effective. This is the model for developing effective treatments and autism has a long way to go in this because we still don't know the majority of genetic changes and brain abnormalities that contribute to autism.
Research and Autism
worriedmom: What about a cure? Do you believe there can be a cure for autism?
Speaker - Thomas Frazier II, PhD: There is no cure now for the vast majority of cases of autism. The few cases where there is an effective treatment is where a medical disorder has been identified and treated and as a result autism symptoms have improved. These situations are very rare. However, with good research into the genetic and biological causes of autism, treatments will improve and be more effective in reducing autism symptoms. It is unlikely that in the next few years a cure will be found but this depends on the pace of genetic and neurobiological research. And claims of children being cured (outside of the rare scenario I described above) should be viewed very skeptically.
jpat: What is the current focus of autism research?
Speaker - Thomas Frazier II, PhD: There are many foci to autism research, everything from trying to figure out the genetic contributions to autism, to examining the brain systems that contribute to autism symptoms, to understanding the behavior of children with autism and how it differs from typically developing children, to developing new assessment measures to detect autism more readily and earlier so that treatment can be started, to studying new treatments or ways of tracking progress in treatment. New treatments being studied include medicines to modify the symptoms that kids with autism show and new behavioral and social skills treatments.
jpat: What do you see as the greatest obstacle facing researchers wanting to study autism?
Speaker - Thomas Frazier II, PhD: This is a tough question. There are a number of obstacles. As a young researcher one of the hardest is obtaining funding. This makes it difficult to do any research. Another obstacle is getting mentorship. Since most NIH (National Institute of Health) initial grants require evidence of mentorship, if you don't have an established mentor it is hard to get NIH funding. This is also true for foundation funding. Another practical obstacle is the vast differences in the presentation of children with autism. This has led to some researchers only studying high functioning autism or Asperger's disorder. But even within these groups there are many differences in the behaviors and presentation of these patients. This makes it difficult to find the brain changes that contribute to autism and the genetic causes since a varied population is likely to have many different brain changes and genetic contributions to autism. In other words, autism is not one disease. It is many different diseases/disorders that all share a few common features problems with social interaction, communication, and repetitive or odd/unusual behaviors. Researchers are focused on trying to pair down autism to more unique sub-groups that may be more likely to have a similar cause to the illness. This will make finding these causes easier.
Cleveland_Clinic_Host: I'm sorry to say that our time with Dr. Frazier and Dr. Knapp is over. Thank you again for taking the time to answer questions.
Speaker - Julie Knapp, PhD: Thank you for your questions today. As a final comment, I encourage parents to be smart and critical consumers of treatment for their child. When a professional recommends a specific treatment, ask that professional questions such as “What is the specific content of the treatment you are recommending?” “How often will progress be assessed with this treatment?” “How is progress measured?” “Is there research to support the effectiveness of this type of treatment?” and finally, “Has research shown this treatment to be better than other types of treatment?”
Speaker - Thomas Frazier II, PhD: Thanks to everyone for participating. If folks have any additional questions please contact the autism center at the Cleveland Clinic. Hopefully as research progresses we will have better, more detailed answers to many of the wonderful questions raised in this chat.
Cleveland_Clinic_Host: If you would like more information regarding Autism, please visit the Cleveland Clinic Children’s Hospital Center for Autism website. For general health information you may also wish to visit www.clevelandclinic.org/health/default.aspx.
This chat occurred in April 2008.
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