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New Insight into Autism and Intestinal Problems

September 19, 2011 6 comments

As parents have long reported, many children with autism experience severe gastrointestinal (GI) problems, and the associated discomfort can worsen behavior. Now research supported by Autism Speaks is lending new insight into how the GI activity of children with autism may differ from that of other children in key ways. Read more in the science news section at autismspeaks.org.

ADHD Symptoms in Children with Autism

September 19, 2011 34 comments

 The symptoms of attention deficit and hyperactivity disorder (ADHD) create significant problems for over half of all children with autism and may be both under-recognized and under-treated by pediatricians. These findings—from Autism Speaks’ Autism Treatment Network (ATN)—were presented Sunday at The Society for Developmental and Behavioral Pediatrics annual conference, in San Antonio, Texas. For more information see our news item here

Autism Treatment Network LIVE Chat with Dan Coury, MD and Nancy Jones, PhD Transcript

September 15, 2011 6 comments
On September 14, Dan Coury, MD, the medical director of Autism Speaks’ Autism Treatment Network (ATN) and Nancy Jones, Ph.D., the ATN Program Director hosted a webchat, answering questions related to the release of the new ATN tool kits, “Medication Decision Aid Tool Kit” and “Blood Draw Tool Kit.”
We would love to hear your feedback! What did you think of the chat? Were your questions answered? Do you have any additional comments or questions you would like to add?
12:51
Hi Everybody,Welcome to another Autism Speaks science webchat. Today we’re pleased to have two hosts to field your questions:Dan Coury, MD, is the medical director of Autism Speaks’ Autism Treatment Network (ATN), a system of 17 advanced autism treatment centers across North America, where children and adolescents receive integrated care that includes treatment for associated medical conditions such as sleep disturbances and gastrointestinal issues. As a developmental-behavioral pediatrician, Dr. Coury has cared for children and adolescents with developmental disorders including autism for more than 25 years at Nationwide Children’s Hospital, in Columbus, Ohio. Dr. Coury is also a professor of pediatrics and psychiatry at Ohio State University.Dr. Coury will be fielding your medical questions related to the release of the ATN new toolkits: “Autism: Should My Child Take Medicine for Challenging Behavior?” and “Taking the Work Out of Blood Work: Helping Your Child with ASD.”With Dr. Coury today is ATN Program Director Nancy Jones, PhD. Dr. Jones can answer more general questions about the ATN and its member clinics.
DISCLAIMER: The responses in this webchat are not to be construed as medical advice or treatment, nor should they take the place of individualized medical consultation with your or your child’s doctors and other healthcare providers.
12:54
Comment From Danielle Smith

My son was recently diagnosed with ASD and the dr has him on focalin 2.5mg but it doesnt seem to work and since there really is no medication for autism is it wise for me to keep him on this medicine

12:56
Dr. Coury here. It depends on what the goal was for the Focalin. If it is to improve attention or overactive symptoms, it may be either too low a dose or simply not helpful as you describe. You should discuss options with your doctor at this point. Other medicines might be more helpful.
12:57
Comment From Lisa

My son has been prescribed Tenex at 1/2 mg every night, seems to help take the edge off of him & make him alot happier. any opinion on this new drug?

12:58
Dr. Coury here. Tenex has been used off-label for many years for children with autism to treat different symptoms. It has been shown to be effective for attention and overactive symptoms, and some parents report help with sleep issues.
12:58
Comment From Daniella

How early on is autism detected in a child? Are there activities can do to help with their development before school age?

12:58
Daniella, Dr. Jones here. Autism can be detected as early as 16 months and is typically diagnosed at around 3 years. But early signs of autism can be seen earlier than this. You can learn more about the early signs on the Autism Speaks websitehttp://www.autismspeaks.org/what-autism/learn-signs.
12:59
Comment From Nancy

Hi, my name is Nancy and my Grandson has Autism. At bedtime he gets this sudden rush of energy, making it impossible for him to sleep, what do you think about giving a child melatonin?

1:02
Dr. Coury here. Melatonin has been shown to be effective and safe in promoting sleep in individuals with autism disorders. It is worth discussing with your grandchild’s doctor.
1:02
Comment From Scott

My son was Diagnosed at 18 months with ASD. He is now 4 years old and has never been prescribed any medication for his disorder. It has never even been brought up before??

1:02
Dr. Coury here: A great question Scott. Not every person with autism has behavior that requires medication as part of the treatment plan. Your doctor may not have seen a need.
1:05
Comment from Reetta in Montreal:
My 3.5 year old has been taking Valproic for almost two years now. It was originally prescribed because of severe automultilation and suspicion of epilepsy and later continued because with it she sleeps better and is happier during the day. My question: I feel like my daughter is better with this medication but I still constantly question if there is harm in this for her. How do you advice parents in these situations? Why do we question so much more the medication taken for behavior then for example the 2 other meds my daughter takes for her digestive system? I could use any words of wisdom.
Thank you.
1:06
Dr. Coury’s here: I think it is a good idea to review the medications that your child takes at least on an annual basis. Why is my child taking this, is it doing what it is meant to do, are we on the proper dose? If things are going well, the tendency is to continue the medication because of the good that is seen. However, sometimes problem behaviors fade away and don’t necessarily come back. One option to consider is gradually weaning your child from the medication over a long period of time – many months to a year. Also, if the dose has not changed over the past two years it is possible that your child has outgrown the dose and is already “weaning” herself because she is receiving a sub-optimal dose. Your child does mature and acquire positive behaviors – sleeping better, better mood – through activities and treatments in addition to medicine.I think parents question medicine for behavior more than for other reasons – digestive, etc – because parents feel that their child’s behavior is a result of something the parents are doing wrong. I think when parents consider all the possible reasons for their child’s behavior and determine that it is not due to parenting actions, those parents feel more comfortable that medication is part of the overall treatment plan.
1:07
Dr. Coury here. Ritalin and other medicines used for ADHD such as Strattera, Focalin and Adderall can be helpful in treating attention and hyperactive/impulsive symptoms. The dosage varies according to each child, but the dosages you describe here are fairly typical. These options are worth discussing with your doctor if these are challenging behaviors for your child.
1:07
Comment From Guest

How do you feel about Ritalin (10 mg daily, 5mg morning and 5 mg afternoon) for a 4.5 year old (will be 5 Jan. 1st)? He has been diagnosed with PDD-NOS, Apraxia, ADHD, and behavioral issues. I give him fish oil too, would like more info on dosage for fish oil. Thanks.

1:09
Comment From Guest

My son is 10, severe autism, and nonverbal. Sometimes he cries for no apparent reason…and then he tends to get angry and grabbing everything and controlling what everyone does and where everything is “located” He is on risperidone (new) .25 mg at night…he has been using prozac for major anxiety and valproic acid for seizures. We also use melatonin at night to help sleep.

1:11
Dr. Coury here. Risperidone is FDA approved to treat “irritability” seen with autism – the moodiness, difficulty transitioning and angry / aggressive behaviors that accompany that difficulty. It can be very helpful. The prozac, valproic acid and melatonin are all medicines that are commonly used to manage the target symptoms / behaviors you describe.
1:12
Comment From Jessie

My son was diagnosed at 2 and is now 4. He has autism, ADHD and Epilepsy. Should he be on medication for this and how do these all fit together?

1:13
Dr. Coury here. The Autism Speaks ATN Medication Decision Aid is designed to help families make this decision. Not every person with autism requires medication. There are several factors to consider.
1:14
Comment From Nancy

could you explain what PDD-Nos is?

1:14
To Nancy, Dr. Jones here. PDD-NOS is one of the diagnoses that are part of the group of disorders called Autism Spectrum Disorders (ASD). You can also find more information about diagnosis at http://www.autismspeaks.org/what-autism/diagnosis, which has a link to frequently asked questions. PDD-NOS is typically given to children who may have social impairments associated with autism but not necessarily both the language and repetitive behaviors and may have more mild symptoms
1:14
Comment From Melanie

My son is 6 and his anxiety has increased dramatically. His Dr is recommending prozac. I am hesitant because he is so young and I feel all the correct supports are not in place yet. However, he has started eloping and I am scare he is going to hurt himself. When do you finally decide to take that next step?

1:17
Dr. Coury here. Melanie, you are considering all the right factors. The Autism Speaks ATN Medication Decision Aid is intended to help families sort out these issues, identify what needs to be discussed further with your physician, and come to a decision that you are comfortable with. Be sure to identify clearly what the target behaviors are for the medicine that is being recommended.
1:17
Comment From Kevin

My son has Asperger’s and although my daughter has not been formally diagnosed yet, we suspect she does too. She is 10 and suffers from extreme social anxiety and is starting to show signs of depression. We are considering medication for her anxiety/depression. Can you comment on specific medications that work for children with Asperger’s? Do the potential benefits in using anti-anxiety medication outweigh the potential side effects?

1:19
Dr. Coury here. The usual anxiety medications such as zoloft, prozac and celexa have all been used to treat anxiety in individuals with autism. They can be effective, although it seems they are less effective than in typically developing individuals. For most cases the potential benefits outweigh the potential sideeffects.The ATN Medication Decision Aid can help guide you through the questions to discuss with your doctor in coming to a decision on this.
1:20
Comment From Lucy Maldonado

Why there’s Doctors that don’t beleive in the diagnosis of ASD given from my son’s Neurologist just because he is too young (yrs)?? And he was denied for Wrap around services because of that?? SOmetime I feel very diaspointed. But now we just did the grievance

1:20
Comment From Marissa

My 21 year old son has never needed medication for his autism, however, he has been experiencing behavior that likely needs medical intervention (very stimulated/over-stimulated, has displayed SIB and aggressed at others, can’t attend, hyper, etc.). This behavior is episodic in nature and he has extended periods of calm, happy behavior which used to be is typical disposition. Dr. is recommending using risperdol as a PRN due to the episodic nature of the behavior. Does this sound correct? Should we be looking into other meds or daily meds?

1:21
To Lucy Maldonado, Dr. Jones here. Autism Speaks Family services has Autism Response Team (ART) members who can help with questions about local services. They are specially trained to connect families with information, resources and opportunities.Call them at 888-AUTISM 2 (288-4762) or email at familyservices@autismspeaks.org.
1:23
Dr. Coury here: Marissa, the ATN Medication Decision Aid can help guide you through this decision process. An important part of your decision is the episodic nature of your son’s problems, and determining how much of a problem this behavior poses to him. Medicines such as risperdal are not usually used as PRN or “as needed”. More detailed discussion with your doctor may suggest other potential medicine options.
1:24
Comment From Gina

My daughter has selective mutism. Is there a med . for this?

1:25
Dr. Coury here: Gina, there is no specific medicine for selective mutism. This is generally thought to be related to anxiety disorders, and the anxiety medicines such as zoloft and prozac have been used to treat this in individuals who otherwise are developing normally.
1:28
Comment From Barbara

Are there really any vitamins or supplements that Autistic children need? My grandson eats no vegetables or fruit and has sensory issues.

1:31
To Barbara, Dr. Jones here. I am sharing with you an article from some of our ATN clinicians on frequently asked questions about nutritional needs of children with ASD.http://www.autismspeaks.org/sites/default/files/documents/airperspectives_newsletter_layout_final_lr.pdf(page 7)Nutritional needs are very individual especially if you grandson has eating preferences. You and your family can work with your clinician or a registered dietician to determine your grandson’s specifc needs. You can find information here: www.eatright.org “Find a Registered Dietician”
1:31
Comment From Jill

Are there any medications that are actually FDA approved in treating children under 10 years old? I have seen children as young as 5 years old on up to 5 or 6 different psych meds. Does not sound very safe. Is this common practice?

1:32
Dr. Coury here. Jill, there are many medications FDA approved to treat common symptoms seen in autism that are approved down to age 6. These include the usual ADHD medicines as well as risperidone and abilify. The use of multiple medicines is common, as doctors try to find the right medicine to treat the person’s symptoms or target behaviors and most medicines don’t treat all of these challenging behaviors. In general most physicians try hard to avoid medicine in children under 5, and always try to avoid multiple medicines. The ATN Medication Decision Aid can help keep parents and doctors on track in choosing medicines and whether to keep on more than one medicine.
1:35
Comment from Louise
My son, 12 yrs, on abilify. It helps a little but still the dose is probably not high enough. I’m nervous abt increasing it. We have tried him on and off various meds and NOT being on something is not an option. Behaviors not just challenging..can be dangerous. AT A LOSS OF WHAT TO DO!
1:36
Dr. Coury here: Finding the right medicine at the right dose can be frustrating, and often takes time. It is a good idea to be cautious about simply increasing a dose without considering alternative approaches. Among the factors to consider: Have other medicines besides Abilify been tried? If not, and your child is near or at maximum dosage, a switch to another medication may be in order. Other medicines from a similar class of drugs or a different class of drugs may need to be considered. Reviewing the target symptoms or behaviors can help with this problem solving. It is also important to be certain whether the problem being addressed is one that can be treated with medicine, or whether it requires more of a behavioral approach. It may be that a combination of medication and behavioral management is what is needed.
1:36
Comment From Teresa

One of my autistic children is on 4 different meds. Some of these are epilepsy meds. Is that normal or common to give autistic children those types of meds? Also, our doctor told us to not feed our children anything with preservatives in it-to grow our own food and freeze it. Will that really help?

1:37
Dr. Coury here. Teresa, some epilepsy medicines such as valproic acid and carbamazepine are also approved to treat bipolar disorder. These medicines are referred to as mood stabilizers. The mood swings and outbursts seen in some people with autism lead doctors to prescribe these medicines, and they can be helfpul. There is more and more good research coming out regarding food dyes and preservatives, and limiting them is probably a good idea, but everything in moderation. It may not be feasible for you to grow all your own food, etc.
1:39
Comment From debra

Are the risks worth the results in autitic children with anger behaviour issues?

1:39
Dr. Coury here: Debra, your question is an important one in deciding whether to use medicine to help wiht challenging behaviors. The ATN Medication Decision Aid can help guide you through this decision process, and most especially ask your doctor the right questions.
1:43
Comment from Yvonne
My 9 year old son is high functioning with ASD and PDDNOS. He dislikes the doctors office and is terrified of any shots or needles. I totally understand since it takes 2 people to hold him down for shots and 3 people to attempt to draw blood. What could you recommend since he is coming up on his year check up that does require shots and they will also want a blood test completed. Any help would be greatly appreciated.
1:44
Dr. Jones’s here … There are many things you can do to help you and your son prepare for blood draws. Detailed ideas are discussed in our blood work toolkit, which you can download at here. It also provides practical examples and sample visual supports you can print out and use for your visit.Key things highlighted in the toolkit are: 1) preparing for the visit; 2) learning and practicing relaxation and distraction techniques; 3) using visual supports and social stories to help your child prepare for the visit. It can be helpful to practice the techniques at home before your visit. Another key part of preparing for and managing a visit is working with the local clinic staff. Since your son has an annual visit coming up, we’d recommend you communicate with your nurse or healthcare provider in advance of the visit and discuss your concerns. The blood work toolkit is available in a version for your healthcare professional. It can be helpful to share this with your healthcare team and discuss the information with them before your next visit. You can work with them to be sure they have any pain management or other supplies available and that they can help with relaxation techniques.
1:45
Comment From Guest

How long do you recommend in trying a treatment before introducing another varialbe?

1:45
Dr. Coury here; How long to wait before introducing another variable depends on the previous varialbe or medicine. For some medicines, a change can be done within a few days; for other medicines it may be several weeks before you and your doctor have seen all of the potential benefit of a medicine or other treatment. Your doctor should be able to describe this timeline when a medicine is started.
1:47
Comment From Peggy

My son is 10, and is high function,and is ADHD, is on no meds. But has major anxiety, poor social skills, has hard time with comprehension, along with sound sensitive. He has Med-i-cal . I am in need of help, he is just enough “normal” not to get into Inland Reginal Center (state funded) can you recommend anything to help me out?

1:48
To Peggy, Dr. Jones here. I would also suggest you contact our Autism Speaks Family services Autism Response Team (ART) members. They can help with questions about local services. They are specially trained to connect families with information, resources and opportunities.Call them at 888-AUTISM 2 (288-4762) or email atfamilyservices@autismspeaks.org.We also have a searchable database of resources. It is searchable by state:http://www.autismspeaks.org/community/fsdb/search.php I am not sure you are in the greater LA area but you can also contact our ATN center at CHLA for help with regional services:Children’s Hospital of Los Angeles (Los Angeles, CA)
Contact: Kathryn Smith
Phone: (323) 361-6102
1:49
Comment From Joanne

Is there a chance that stimming behavior will improve with age? Is there anything that can be done to help control or lessen them?

1:51
Dr. Coury here: Joanne, there are medicines that can help reduce stimming behavior. Behavioral interventions are also helpful. The ATN Medication Decision Aid can help you make the decision whether to consider medicine or not. Generally medicine will not make these behaviors disappear without behavioral intervention accompanying them.
1:53
Comment From joanne

I had my son on melatonin and it never worked, is there another drug i can get to help him sleep.

1:55
Dr. Coury here: Joanne, there are a variety of medicines that are used to help promote sleep in children and adolescents with autism. There is some research to support using clonidine. There are many others that are also tried, which suggests that we really don’t have a perfect answer for this problem.
1:58
Comment From Sarah

Hi Dr. Coury, My son is 14, (diagnosed at age 3 with autistic disorder), he started taking risperidone over the summer for irritability. It is helping, but his appetite is crazy, and he has really put on a lot of weight. Is there any evidence that anything could help this, like omega 3s?

1:58
Dr. Coury here: Sarah, increased appetite and accompanying weight gain is one of the significant side effects of risperdal. We usually recommend a good activity plan and strategies to decrease access to food. The Autism Speaks ATN is starting a new research study examining the use of a medication to help reduce appetite and weight gain from medicines like this.
2:00
Comment From dee

my grandson has autism and his eating habits are very poor..school recommends putting him on antidepressants…will this help him

2:00
Dr. Coury here: Dee, it depends on what the school and your childs doctor thinks is causing the poor appetite. If your child is depressed, it could help. However, many antidepressants can cause decreased appetite and may make things worse. This one requires good discussion with your doctor.
2:00
Thanks everyone for GREAT questions. Forgive us that we could not get to all of them.We’ll try to answer more on the “Got Questions?” section of our Science Blog. And we’ll be back with more webchats and more ATN toolkits in the coming months. Meanwhile, look for the full transcript of this webchat in tomorrow’s science blog.Here are the links:http://blog.autismspeaks.org/category/science/http://blog.autismspeaks.org/category/science/got-questions/

ATN Clinician Presents Webinar

September 14, 2011 1 comment

Autism Spectrum Disorders Webinar  
  September 19, 2011 from 1 to 1:45pm (ET)

The American Academy of Pediatrics Pediatric Care Online is hosting a FREE webinar on autism spectrum disorders (ASD). This webinar will be presented by Autism Speaks Autism Treatment Network (ATN) clinician Patricia Manning-Courtney, MD, FAAP, associate professor of clinical pediatrics, pediatric developmental specialist, and medical director of The Kelly O’Leary Center for Autism Spectrum Disorders, our ATN site at the  Cincinnati Children’s Hospital Medical Center.

Children with ASD are being recognized and diagnosed in increasing numbers. Early identification and treatment is key to maximizing outcome. Parents of children with ASD benefit tremendously from an informed and supportive Primary Care Provider. This webinar will focus on:

  • Screening and diagnosis recommendations
  • Overview of treatment approaches, including medication
  • Review of current controversies

To view the webinar on Monday, September 19, please use the following URL and password:

Additional information and resources related to autism can be found on the Autism Information page of the National Center for Medical Home Implementation Web site.

Autism Journal Launches Podcasts for Broad Audiences

September 5, 2011 1 comment

The international journal Autism is launching a new podcast series, “Autism Matters.” Hosted by University of London psychologist Laura Crane, PhD, the series aims to showcase the latest research published in the journal in accessible language with an emphasis on real world relevance. The intended audience is a broad one–from academics and journalists to individuals with autism and their families.

The first podcast is an interview with Professor Neil Humphrey (Manchester University, UK) on mainstream versus special education for children with autism. To listen click here.

Can my taking medication during pregnancy cause autism in my baby?

September 2, 2011 49 comments

This week’s “Got Questions?” response comes from Alycia Halladay, PhD, Autism Speaks’ director of research for environmental science

Last month, a group of California researchers reported an increased risk of autism among babies whose mothers took a certain catergory of antidepressant medications–selective serotonin reuptake inhibitors (SSRIs)—during the first trimester of pregnancy. You may know these drugs by such brand names as Prozac, Effexor, Paxil, and Celexa.

So what do these results mean for pregnant women? First, caution is needed before rushing to judgment. The study was relatively small, and the increase in the risk of autism was modest. So more study is clearly needed to confirm the link and clarify how great a risk, if any, is associated with a mother using this type of antidepressant during pregnancy.

Further caution is needed because the effects of a mother’s anxiety and depression during pregnancy and early infancy are well known. In fact, it’s not clear whether the autism risk associated with taking antidepressants during pregnancy is, in fact, related to the women’s depression rather than the drugs themselves.

For these reason, many doctors have argued that the benefits of SSRIs outweigh concerns about risks that SSRI exposure may pose to a fetus or infant during pregnancy and nursing. Clearly, more research is needed.

Beyond SSRIs, researchers have looked at several other medications to see if their use during pregnancy increases the risk that a baby will go on to develop autism. Among the most thoroughly researched is the anti-seizure medication valproic acid (U.S. brand name Depakote). Studies show that, as a group, children whose mothers take valproic acid during their first trimester of pregnancy are more likely to develop an autism spectrum disorder (ASD) than are children who are not exposed.

Autism Speaks has supported research into how valproic acid might contribute to the development of ASDs. Through the study of donated brain tissue, for example, we have learned that individuals with autism share some “neuropathologies,” or altered brain features, with those who were exposed to valproic acid before birth. In addition, several studies show that exposure to valproic acid during critical periods of brain development can produce autism-like behaviors in animal models.

So the good news is that our research has deepened understanding about how valproic acid during pregnancy can contribute to the development of ASDs. The bad news is that it can be quite dangerous for women with epilepsy to stop taking this medication during pregnancy—owing to their increased risk of seizures. As a result, such decisions should be made carefully with a physician can discuss alternative drugs.

Findings are still emerging with other medications given during pregnancy. For instance, relatively small studies (such as this one) suggest an increased risk for ASD in babies whose mothers were given the medication terbutaline to stop premature labor. Another small study suggested increased risk of autism related to women taking high doses of the anti-ulcer drug misoprostol early in pregnancy. (This drug is also used to induce labor later in pregnancy.) But in many cases, such preliminary research has yet to move past the “interesting” stage to reach enough certainty to change medical practices.

Other, larger studies hint at an increased risk of autism in the babies of women who take certain broad classes of medications such as antipsychotics or mood stabilizers during pregnancy. Still the question remains: Is the autism risk due to the medications or to the underlying medical conditions that the drugs are being used to treat?

Beyond medications, studies have revealed a number of other pregnancy complications and events that appear to contribute to the risk that a baby will go on to develop autism.  These include the pregnant mother’s exposure to toxic chemicals, infections such as flu, and her diet and nutrition at the time of conception as well as during pregnancy.

Autism Speaks continues to fund a number of important studies looking at autism risk factors during pregnancy. If you have at least one child already diagnosed with an ASD, find out more about participating in the EARLI study (link at left) before or at the start of your next pregnancy. Or consider enrolling your child and family in the CHARGE study, which looks at risk factors before, during, and after your child’s birth.

We will be continuing to update you on the science as it emerges.  If you have any concerns about the medications you are taking during pregnancy, please discuss them with your doctor. For more resources, we also recommend the Organization of Teratology Information Specialists.

The BabySibs Consortium: Important Findings Ahead

August 30, 2011 12 comments


Posted by Alycia Halladay, PhD, director of research for environmental science, Autism Speaks

Last week, Autism Speaks High Risk Baby Siblings Research Consortium made the news with the findings that autism recurs in families much more frequently than had been realized.

Autism’s recurrence within families is of tremendous interest to both researchers and families, and our “High Risk Baby Siblings Research Consortium” continues to study this and other important questions regarding the risks, causes, prevention, and early treatment of autism.

So I’d like to take this opportunity to tell you more about this remarkable group of researchers and their ongoing research–made possible in no small part by your volunteer and donor support.

We support this research consortium in collaboration with the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). In 2003, Alice Kau, of NICHD, and our own VP of Scientific Affairs Andy Shih organized the consortium. I joined with a leadership role in 2005. Since then, the group has grown to include 25 leading autism researchers across 21 medical centers in the United States, Canada, Israel, and the United Kingdom.

They all share the goal of studying the earliest symptoms of autism spectrum disorders (ASDs). They are able to do so because of the generous participation of families with infants and at least one older child on the autism spectrum. These families are so important to research because of the relatively high likelihood that autism will recur among younger siblings.

By following the development of these young children, our consortium researchers are able to do much more than give us more accurate information on recurrence rates.  For example, they are making exciting progress in increasing understanding of how and when autism signs and symptoms first appear. This includes insights into the pattern we call “regression,” which involves a loss of skills in an infant or toddler who appeared to be developing normally.  As a group, the consortium has published a number of articles to help guide pediatricians and other primary care doctors in how to approach children and families already affected by autism. Their research into early signs and symptoms, for example, has helped clinicians diagnose and provide treatment as early as 12 months of age.

Several of the Baby Sibling Consortium researchers also participate in another important Autism Speaks group, the Toddler Treatment Network. It has a deeper focus on early signs and symptoms, particularly as they relate to developing earlier interventions that may actually prevent the development of some or all autism symptoms.

Families with recurrent autism are crucially needed to help our researchers identify the genes and other influences that increase the risk that children will develop autism. By allowing our researchers to track progress beginning in pregnancy, for example, families provide insights into such risk factors as parental age at conception, and maternal infection and nutrition during pregnancy.

Our researchers are also tracking brain development and identifying so-called biomarkers (such as distinctive brainwave patterns) for earlier and more accurate diagnosis.  And, yes, this research can also help us look at whether certain patterns of vaccination make any difference in the risk of autism among children genetically predisposed to the disorder.

Taken together, a better understanding of early signs and symptoms has led to earlier, better accurate diagnoses of ASD along with important knowledge of what causes autism.  This research is not possible without the group working together, and without the valuable support of the National Institutes of Health, and most importantly, the families who donate their valuable time to this research.

Interested in learning more—and perhaps participating in the research?   Please check out our list of Baby Sibling Research Consortium researchers and contact one in your area.

My child has joined a ‘mainstream’ classroom but is struggling. What can help?

August 26, 2011 15 comments


Today’s “Got Questions?” response again comes from Simon Wallace, PhD, Autism Speaks director of scientific development for Europe

The U.S. Individuals with Disabilities Education Act (IDEA) requires schools to include children with disabilities in the least restrictive classroom settings that are possible. At the same time, studies show that different levels of so-called “mainstreaming” present different benefits and challenges.1 And parental preference often varies.2 So the first question to ask yourself is “what type of school placement is the best for my child?”

For instance, you have the option of full inclusion, with all classes taught in a mainstream environment, or partial mainstream, with some proportion of classes taught in a more supportive setting. I also encourage parents to keep in mind the potential advantages of a specialist autism school. Making these decisions should always involve a consultation between parents, teachers and the pupil with an autism spectrum disorder (ASD).

Beyond teaching support, we know that bullying and social exclusion affects the mainstream-school experience of many children with ASD. A recent survey estimated that 44% of children with ASD have been bullied.3 Bullying, in turn, can lead to an increased social isolation and mental health difficulties. Another study suggested that the support of classmates is very important to making the mainstream experience a success for the student with autism.4

One method for encouraging peer relationships is a technique called Circle of Friends, where the child with ASD is at the center of a peer group. This group periodically works on specific goals. Another method, which avoids such a strong focus on the child, is to work on social skills in private or with a group of other children with ASD.

Of course, teacher training remains pivotal to supporting the success of children with ASD in a mainstream classroom. Federal law requires that teachers make reasonable adjustments to their teaching strategies and classroom environment to accommodate the needs of pupils with disabilities. In particular, teachers should be encouraged to adjust the content and delivery of the curriculum, to consider the sensory needs of the pupil, and to welcome the input of both parents and special-needs students when planning their educational programs.

Here are some useful resources, along with references to the studies I mentioned:

Resources:

1. The Autism Speaks School Community Tool Kit
2. The Asperger Syndrome/HFA and the Classroom chapter of the Autism Speaks Asperger Syndrome and High Functioning Autism Tool Kit
3. Bullying and ASD: A Guide for School Staff (UK)
4. IEPs, iPads and Bullies: 10 Tips from a Dad Who’s Been There, a recent Family Services blog from dad James Vaughan

References:
1. Full inclusion and students with autism. Mesibov GB, Shea V. J Autism Dev Disord. 1996 Jun;26(3):337-46.
2. Parental perspectives on inclusion: effects of autism and Down syndrome. Kasari C, Freeman SF, Bauminger N, Alkin MC. J Autism Dev Disord. 1999 Aug;29(4):297-305.
3. Bullying among children with autism and the influence of comorbidity with ADHD: a population-based study. Montes G, Halterman JS. Ambul Pediatr. 2007 May-Jun;7(3):253-7.
4. Inclusion as social practice: views of children with autism.  Ochs E, Kremer T, Solomon O, Sirota K. Social Development. 2001;10(3):399–419.

Got more questions? Please email us at gotquestions@autismspeaks.org. Thanks.


Reflections from our First Weatherstone Grad

August 23, 2011 4 comments

This summer brought the completion of the first round of Dennis Weatherstone Pre-Doctoral Fellowships, funded by the Stavros Niarchos Foundation in memory of Sir Dennis Weatherstone, the former chair and CEO of J.P. Morgan, to encourage promising young scientists to chose autism research as their career.

 In this blog post, Meaghan Parlade, the first Weatherstone grad to complete her fellowship, reflects on her experience and the program’s importance to future autism research.

The life of a pre-doctoral student can be intense and taxing, to say the least. However, the training and experiences I have garnered during the past (dare I say it?) seven years have been invaluable in positioning me to achieve my ultimate goal: to further the scientific understanding of autism in a way that improves the lives of affected children and families. Families affected by autism are some of the most steadfast, passionate, and deeply devoted people I have ever encountered.  No doubt, they will continue to inspire my work.

Looking back at my training, one experience stands out above the rest as the most formidable in shaping my development as a clinician and scientist: The Dennis Weatherstone Predoctoral Fellowship awarded by Autism Speaks. I am honored to be the first to complete the program.

With the support of Autism Speaks and in collaboration with my graduate advisor Jana Iverson, PhD, at the University of Pittsburgh, I have been investigating the development of communication skills in infants who have an older sibling on the autism spectrum. These skills include gestures, smiles, eye contact and sounds.

In conducting this research, our hope is to identify behavioral indicators of autism at a much earlier point than is currently possible. This, we further hope, will allow earlier diagnosis and treatment and lead to improved outcomes. In addition, by studying the development of social difficulties during infancy, we hope to improve our understanding of social communication difficulties in older children on the spectrum—and, in turn, hasten the development of tailored interventions.

Fellowships such as mine are highly coveted by my classmates because the financial support allows us to focus intensely on our research instead of taking on such time-consuming jobs such as teaching and working in faculty labs. The Weatherstone Fellowship allowed me to devote the majority of the past two years to my scientific research, clinical goals, and professional development. It also allowed me to meet regularly with other Weatherstone fellows and their advisors (all of whom are leading scientists in autism research) and to participate in national autism scientific meetings—opportunities that will enable me to develop future collaborations.

Finally, I believe this experience played an instrumental role in helping me secure a predoctoral internship in clinical psychology, the final step in my training to become a child psychologist and practice independently in clinical and research positions. Starting Sept. 1st, I will begin my internship at the Mailman Center for Child Development at the University of Miami’s Miller School of Medicine—as the program’s first autism intern.

As I look forward to this new exciting step in my career, I continue to reflect on my experience as a Weatherstone fellow. I appreciate how it has helped prepare me for a career dedicated to excellence in both research endeavors and clinical work, ultimately allowing me to better serve the unique needs of children and families affected by autism.

What can help a student on the spectrum succeed in college?

August 19, 2011 10 comments

Back by popular demand: The “Got Questions?” feature of the Autism Speaks Science blog. Today’s answer comes from… 

Simon Wallace, PhD, Autism Speaks director of scientific development for Europe

I can remember starting college and how anxious I felt facing the new and challenging environment. I had to meet such a range of new people, deal with academic pressures, organise my day and get to appointments on time, manage my finances (I still struggle!) and generally look after myself. Such an upheaval tests any young person—all the more so for a young adult on the autism spectrum.

So what can help? First, remember that US and international legislation supports the right to a college education for individuals with disabilities. Educational institutions are required under the Individuals with Disabilities Education Act and the Americans with Disabilities Act to provide services for students with an autism spectrum disorder (ASD).  The college are required to make all reasonable adjustments to accommodate the needs of students on the autism spectrum and to avoid discrimination based on their disability. (See Ralph Savarese’s blog post on Oberlin’s acceptance of his son, DJ, possibly the first nonspeaking student with autism to live in a US college dorm and be accepted to such a highly selective US college.)

In addition, there are many steps that parents can take to help their son or daughter have a rewarding college experience. Transition planning is key. I encourage you to work with your child’s high-school and college advisors to draw up a transition plan that extends from before the freshman year to post-graduation. Consider such issues as the appropriateness of a college’s location, available facilities and course content. It helps to visit the college, meet with at least some of the teaching staff and tour classrooms and dorms with an eye for how well they accommodate your student’s needs.

As part of the transition plan, work closely with the college’s disability services. Of course, this requires that your son or daughter discloses his or her ASD and, if necessary, provides the necessary documentation of disability and needs. Armed with this information, the disability office can organize an assessment of need and provide learning supports. These can include both psychological and behavioral services, assistive technologies (e.g. a recording device for a lecture) and academic aids such as note-takers and extra time in exams. It is important to have assessments of need conducted early so that learning supports are in place when the student starts coursework. Then, once a year, ensure that college staff review the effectiveness of the support program.

Having a social mentor can be particularly useful. Autism Speaks’ college program–Autism Speaks U–promotes awareness and advocacy for students with ASD and may be one source of social mentoring during college. Sometimes just a friendly ear is needed, particularly at times of increased pressure (e.g. first week of college and exams).

Before the start of classes, see if you can get an advanced class schedule. Consider the timing and distance between classes—again from the point of view of the demands placed on your student.

Finally at least a year before your son or daughter graduates, begin planning an “exit strategy” in consultation with the school’s careers office and other college staff familiar with your now-adult child.

With the right planning and support, college can be a great environment for young adults on the autism spectrum. I hope your son or daughter has as much fun as I did.

Here are some additional resources:

1. The Autism Speaks’ Transition Toolkit, particularly the section on Post-Secondary Educational Opportunities.
2. The TEACCH Autism Program of the University of North Carolina-Chapel Hill.
3. Preparing Students with Autism for College, and Preparing Colleges for Students with Autism, Hurewitz and Berger (2008).
4. Supporting More Able Students on the Autism Spectrum: College and Beyond Journal of Autism and Developmental Disorders VanBergeijk, Klin and Volkmar (2008).
5. The [UK] National Autism Society’s Guidelines for Student Mentors.

Got more Questions? Please email us at gotquestions@autismspeaks.org.

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