Archive
Webchat on Promoting Language, Learning and Engagement in Toddlers and Preschoolers
Thanks to all who joined us for today’s “Office Hour” webchat with our Chief Science Officer, clinical psychologist Geri Dawson, PhD. Here’s the full transcript.
Thursday December 1, 2011
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A Weatherstone Grad Reflects on Entering Autism Research
Posted by Dennis Weatherstone Pre-Doctoral Fellow Elaine Hsiao
Nearly seven years ago, I made the all-important decision to pursue a future in scientific research. I was inspired by the ability of research to humble far-fetched ideas into reality, and I wanted to help uncover knowledge that would serve as an indispensable foundation for the advancement of medicine, technology and industry. Importantly, I saw an opportunity to evoke change in a way that improves lives.
As I enter my fifth year of studying the molecular underpinnings of autism, it is precisely these real-life applications of scientific research that continue to motivate me. I am grateful for the support of Autism Speaks and its numerous donors, in defending the realization that only by pushing the frontiers of science will solutions to today’s most pressing problems be found.
As an Autism Speaks Weatherstone fellow, I have been studying maternal infection as a primary environmental risk factor for autism, under the guidance of neurobiologist Paul Patterson, PhD, at the California Institute of Technology. Using animal models, we are uncovering the biological pathways that implicate infection in the development of core behavioral symptoms of autism as well as associated alterations in brain development. We are further exploring means for effective prevention and treatment, with aims to translate our findings to the identification of potential biomarkers and targets for effective therapies.
Support from the Weatherstone fellowship has also allowed us to explore the potential connections between gastrointestinal (GI) complications, immune dysregulation and behavioral symptoms in animal models for autism. We are very excited that this is now part of a larger collaborative research effort supported by Autism Speaks, with the aim of better understanding gastrointestinal GI and immune dysfunction in certain subsets of persons affected by autism.
In addition to providing financial support for my studies, the Weatherstone fellowship has given me unique opportunities to interact with leading scientists in autism research. I am truly inspired by the breadth and depth of research being conducted by my Weatherstone colleagues and by scientists worldwide. Exchanging ideas with scientists from other laboratories and disciplines greatly informs my own work.
Finally, I am deeply grateful to Autism Speaks and the Weatherstone fellowship for providing unique forums for scientists to interact with individuals and families directly affected by autism. Being able to convey the promises, obstacles and advances of autism research to the community is not only rewarding, but also very constructive. Likewise, my time with these individuals and families—time spent learning about their experiences and needs—drives my desire to conduct autism research that is innovative and informative.
With the valuable training I have received through doctoral research combined with the unique experiences I have gained as a Weatherstone fellow, I feel prepared to pursue a productive career in scientific research, with aims to uncover knowledge that will better our understanding of autism’s causes and lead to the development of more effective tools for its diagnosis and treatment.
[Editor’s note: Administered by Autism Speaks and funded by the Stavros Niarchos Foundation, the Dennis Weatherstone Predoctoral Fellowship Program encourages the most promising young scientists to choose autism research as their career through funding and direct mentoring by the field’s leading investigators.)
Read more news and perspective on the Autism Speaks science page.
My child is sometimes aggressive – what can help?
This week’s “Got Questions?” response comes from Simon Wallace, PhD, Autism Speaks director of scientific development for Europe.
A few months ago, I was visiting an autism clinic in Albania, one of the underserved countries where Autism Speaks is making a difference through our Global Autism Public Health Initiative. There I met a three-year-old girl receiving a diagnostic assessment for autism. Clearly, she wanted her parents to stop talking to us and take her outside. She kicked her father and bit his hand and then began slapping her own head. This young girl was trying to make her preferences known but lacked speech. Aggression was her way of communicating her needs.
Whatever their age, some individuals on the autism spectrum act out aggressively, and clearly, this can be distressing for everyone involved. In fact, aggression is among the most common challenges reported by parents of children and adolescents with autism.
What can help? I suggest working with your child’s physician and therapists on a four-stage approach to tackling this and other problem behaviors. The four steps are identification, understanding, management, and prevention.
By identification, we mean characterizing the problem behavior. As parents, you can write down the type of aggression your child demonstrates along with the time and setting of when the behavior occurs.
Next comes understanding. Specialists often use tools such as the Functional Behavioral Assessment decipher why a person with autism is behaving a certain way. In other words, what is the function of a given behavior for the person with autism? Is she telling you she doesn’t like what you’re doing? Is he telling his teacher that the school work is too complex? Does she want something she cannot have? Identifying the “communication” behind the behavior is the first step to teaching appropriate behaviors that can convey the person’s needs and desires.
In addition, underlying problems can trigger aggression. Among those with autism, common triggers include disturbing breaks in routine, lack of sleep, jarring “sensory stimuli” (noises, lights, or smells) or even undiagnosed mental health problems. Clearly, it’s important to look beyond the behavior itself to identify the underlying cause.
When it comes to managing aggression, there are many options. The information you gathered in identifying and understanding your child’s behavior may guide you and your child’s healthcare providers in developing a plan.
An abundance of research supports the effectiveness of Applied Behavior Analysis (ABA) in helping children with autism learn new and effective behaviors—so that aggression is no longer needed to communicate wants and needs. Research as shown that, in many cases, ABA alone is effective in reducing aggressive behaviors.
When ABA is not effective, it is important to consider the possibility of an underlying medical condition. For example, we know that autism is frequently associated with sleep disturbances and gastrointestinal distress. Disrupted sleep is likewise associated with uncontrolled seizures. Addressing these medical conditions can make a difference in reducing aggressive outbursts. Also remember that the sudden onset of aggression may signal that your child is in pain, ill, or simply exhausted.
Medication has been used successfully to reduce aggression and self-injury in both children and adults with autism. Risperidone, in particular, has gone through extensive testing in this regard. Both risperidone (Risperdal) and aripiprazole (Abilify) are approved by the U.S. Food and Drug Administration (FDA) for treating autism-related irritability, which includes aggression, tantrums, and self-injury. A recent study demonstrated that a combination of parent training (in behavior intervention) and risperidone reduced tantrums and other problematic behaviors in children with autism to a greater degree than did medication alone.
However, the decision whether or not to use behavior modifying medication is can be difficult. Autism Speaks has developed a medication decision aid to help you work with your child’s physician to determine whether this option fits your family’s goals and values. (Available for free download on our Tools You can Use Page.)
Finally we have prevention. Strategies to prevent aggression include working with your child’s therapists and teachers to create calming, predictable, and rewarding environments. Other helpful approaches include visual timetables and structured schedules—both of which can help smooth transitions between activities. Rewarding positive behavior and providing communication tools are additional strategies that many families find helpful.
I hope some of these suggestions help your child and family. And readers, I’d love you to use the comment section to share resources and ideas you’ve found useful.
In Their Own Words – Mean People
This “In Their Own Words” is by Jennifer C., whose three-year-old daughter, Sierra, was diagnosed with autism at 20 months. You can read more of her writing at http://fingerprintsofautism.blogspot.com/.
My family went out to eat last night at a restaurant here in town. We usually go to kid-friendly ones that are pretty noisy already. If any of you have an autistic child you know how they cannot control their volume very well. Sierra is very loud and she doesn’t speak that well yet either, but she talks all the time and she squeals a lot when she is having fun. She was happy and being silly, a far cry from a year ago when she didn’t talk and just cried and yelled when we took her out. We try to teach her how to use an inside voice when we are out, but she does it for a minute and goes right back to being loud.
There were two elderly women sitting across the aisle from us who were just horrified by Sierra; they held their ears and shot glances at us, like my child was throwing knives at them. I do usually apologize for her being loud and I did to the other tables closer to us, but they were being nice about it. It wasn’t a constant loudness; she was being very good – eating her food and just being silly because other people were playing with her and her baby sister. When we were done, my husband got up to pay the bill and that’s when one of the elderly women said to me, “Can you keep your kid quiet or does she have to screech like that?”
I almost choked on my french fry. I have never had someone be so mean about it. If she had actually took a minute to look at Sierra, she would have noticed that she doesn’t talk clearly in any way and that she uses sign language while she is “screeching,” as she put it. That might have been a clue that maybe my child makes noise like that because she does not know how to communicate properly yet! I just said in a very loud and mad tone, “She is autistic and she does not understand how to be quiet!” Then she just gave me a blank look and said, “Okay”. I know she was a coward because she waited until my husband left the table to say it. I hope she was embarrassed. There was so much more I wanted to say but I just couldn’t get it out. I get so upset, then I start to cry and I didn’t want them to see me cry.
I think people are very judgmental about autistic children. They don’t look close enough to see that there might be something wrong with the child; all they see is an unruly child. If they walked in our shoes for one day, they would never be judgmental about another child and their family again. The next time you see a child crying by the gumball machines, it might not be that she is having a temper tantrum for candy; it could be my daughter crying because they changed what is in the machines. At the restaurant, she is crying because the chicken is stringy and she can’t eat stuff with strings hanging off. At the park, it’s because the other kids scare her. At the grocery store, it’s because we walked a different way through the store. Sierra very rarely cries because she can’t have a toy; she cries when her routine changes or when she has trouble communicating her needs, and she gets unruly when she is scared and or on uncommon ground. Imagine having to live life like that and you will think twice about being judgmental.
I love my daughter so much and I wish other people could see her through my eyes, how wonderful, loving, and smart she is, and how frustrated she gets trying to adapt in this world. It breaks my heart every day knowing that she will have to put up with mean people who don’t understand her and what autism is.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
How Becoming a Therapist Changed My Life
This is a guest post by Emily Mandel. Emily is a student at Brandeis University who is training in ABA therapy.
This summer I am interning at a center called Greenwich Education and Prep in Cos Cob, Connecticut, learning to be a therapist for children with autism using Applied Behavior Analysis (ABA) under the supervision of Dr. Mindy Rothstein and her colleagues. Initially, ABA was what I expected it to be: a therapy involving reinforcement of positive solicited behaviors. “Alex, look at me… Alex… Alex, what do you have to say? Say it to my face. Very good! You earn a point toward winning your candy.” However, until I began this training, I had not realized how multi-faceted and complicated ABA is. I had assumed it was the same method of therapy for every child, and that if it did not work it was not the right therapy for the child. What I’ve been observing, however, is quite contrary to my expectations.
Each child has a unique program designed to address the specific preferences, strengths, and areas of challenge. For example, if a child has trouble with eye contact and following directions, the instructor will reinforce eye contact and direction-following with prizes the student can earn after obtaining a certain number of “points.” In addition, the instructor prepares various activities to address each of the areas of difficulty, and monitors the progress made in each activity. For example, that same child with difficulty making eye contact and following directions is given a task like a puzzle and prompted to make eye contact each time a direction is given regarding the puzzle.
Over my summer so far, I’ve seen such changes in the children. I am pleased to see how far each child has progressed using ABA intervention techniques.. Most times forms of therapy– including ABA –benefit from the accompaniment of other forms of therapy. However, I’ve come to believe that ABA is fundamental; the ABA program targets each specific area of challenge for the child. I cannot wait to see how the children I am working with progress over the course of the rest of the summer, and how they will continue to progress throughout their lives.
I’ve made the decision to go through the certification process for Applied Behavior Analysis after I earn my Bachelor’s Degree in Psychology from Brandeis University. Greenwich Education and Prep has truly shown me the cognitive leaps and bounds children with autism can make. I hope to one day be able to change the lives of these children and their families through this fundamental method of therapy. I’ve seen what ABA can achieve, and I know that this is what I want to do with my life.
