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If environmental factors can lead to autism, why does only one of my twin boys have autism?

October 21, 2011 41 comments


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

Today’s question came in response to my last blog post. In it, I explained that when scientists talk about the “environmental factors” that increase the risk of a disorder, they’re referring to pretty much any influence beyond genetics.

In the case of autism, the clearest evidence of environmental influence seems to surround very early events such as conception, pregnancy and birth. Those with the strongest link include parental age at time of conception (both mom and dad), maternal nutrition or illness during pregnancy, and certain birth complications.

The commenter’s question is a great one that scientists are actively exploring. The short answer is that inherited genes (DNA) and environmental factors seem to interact to influence whether an infant goes on to develop autism. So if the commenter’s twins are fraternal (meaning they share about half their DNA), the difference in their genetic makeup might explain why only one developed autism.

But what if the boys are identical twins–meaning they share exactly the same DNA? In this case, something beyond genes likely accounts for the different outcomes. Comparing the rates of autism among identical and fraternal twins provides clues.

In July, researchers used our Autism Genetic Resource Exchange (AGRE) to complete the largest autism twin study to date. They found a 70 percent overlap in autism among identical twins and a 35 percent overlap among fraternal twins. That overlap between fraternal twins is much higher than the estimated 19 percent overlap between different-age siblings.

These numbers tell us that it’s not always genes alone that determine whether a child develops autism. If it were, two identical twins would always share the same outcome, and the rate of a shared autism among fraternal twins would look more like that for different-age siblings. So we conclude that shared environmental influences are also at play.

Although twins share very similar pregnancy and birth environments, those environments aren’t exactly the same. For example, twins can have different positions in the womb or different placentas, and this can affect such environmental influences as blood and oxygen flow. Indeed, twins often have different birth weights, a known risk factor for autism.

It’s important to remember that “environmental” influences such as these don’t cause autism by themselves. Rather, if a child has a genetic predisposition for developing autism, these influences may further increase the risk.

Autism Speaks continues to fund and otherwise support research on both genetic and nongenetic risk factors for autism. EARLI is a network of researchers who follow mothers of children with autism beginning at the start of another pregnancy. IBIS is a study of early brain development in the younger siblings of children with autism. These studies depend on the participation and support of the autism community.  Please visit our Participate in Research page to learn more.

Importantly, these studies provide insights into the underlying biology of different types of autism. This in turn becomes a basis for developing ways to treat and possibly prevent autism. As always, the goal of the research we support is to improve the lives of all on the autism spectrum.

And thanks for the question. Please keep them coming.

My child is nonverbal. Anything new that might help him communicate better?

October 14, 2011 30 comments

Today’s “Got Questions?” answer comes from speech-language pathologists Cynthia Green, Kameron Beaulieu, and Jill Dolata (left to right in photo) of the Autism Speaks Autism Treatment Network (ATN). Their ATN work at the Oregon Health & Science University’s Child Development and Rehabilitation Center involves individualized parent training using a 24-week program that improves children’s social communication skills.

Today, parents and therapists have many new applications and devices that support a child’s nonverbal communication. First and foremost, however, we strongly recommend an insightful look at how your nonverbal child communicates—in other words, how he sends messages to others.

As you and other parents of children with autism know well, non-verbal does not mean non-communicative. So we always want to start with a good understanding of children’s current communication level before attempting to help them move to the next level.

We regularly use the Communication Matrix, a skills assessment designed to evaluate children’s communication abilities. This tool is unique in measuring all possible communicative behaviors, including: pre-intentional (involuntary actions, including crying when wet or hungry); intentional (actions such as fussing and turning away that are not primarily intended for communication);  unconventional (tugging, crowding to get attention);  conventional communication (head nodding, pointing, etc.); concrete symbols (pantomime, “buzzzzz” to mean “bee”); abstract symbols (single words, manual signs); and language (oral and written word combinations, American Sign Language).

To be successful communicators, children need to see that their actions influence those around them, and they must want to communicate. Sometimes, it’s difficult to determine when nonverbal children are sending intentional messages—particularly when they prefer to play by themselves, engage in self-stimulating behaviors or have difficulty sustaining interactions.

There are several programs designed to initiate positive interactions and increase communication in children with autism, including First Things First, Indirect Language Stimulation, DIR/Floortime, the Hanen program, the Early Start Denver Model, and the Autism Parent Training Program. These programs have many similar components including putting yourself at your child’s eye level, allowing your child to direct activities (following his lead), and imitating your child’s behavior. These strategies help forge a connection of interests between you and your child and can support your child’s desire to communicate.

Once children communicate using concrete or abstract symbols, they may benefit from having access to additional communication tools. It helps to remember that we all use a variety of communication methods, including eye contact, facial expressions, body language, tone of voice and gestures. So you might want to start with a system of gestures or sign.

Other low-tech tools include picture symbols and PECS . Some children seem to respond to tangible symbols such as an actual key for “let’s go outside” or a cup for “I’d like a drink.” From the use of tangibles, families can move to photographs of familiar items and eventually to more abstract symbols. Children at this stage may benefit from Tangible Symbol Systems.

Finally, parents and therapists now have access to a number of technological devices and options, from a tape player with simple buttons for playing prerecorded messages and keyboards for typing messages to sophisticated voice output devices and specialized iPhone/iPad applications.

We hope you’ll have fun exploring these options with your child, ideally under the guidance of a therapist well versed in the best evidence-based practices. And please stay tuned for the fall release of the new Autism Speaks ATN brochure on Visual Supports and ASD. We’ll be posting it for free download on the ATN’s Tools You Can Use webpage.

Readers are urged to use independent judgment and request references when considering any resource associated with diagnosis or treatment of autism or the provision of services related to autism. Autism Speaks does not endorse or claim to have personal knowledge of the abilities of references listed. The resources listed in these pages are not intended as a referral, or endorsement of any resource or as a tool for verifying the credentials, qualifications, or abilities of any organization, product or professional. The contents of this blog are solely the responsibility of the authors and do not necessarily represent the official views of Autism Speaks, the Autism Treatment Network and/or the Autism Intervention Research Network on Physical Health.

My child is sometimes aggressive – what can help?

October 7, 2011 44 comments

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.

What do scientists mean when they talk about ‘environmental factors’ that cause autism?

September 30, 2011 34 comments

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

Research has taught us that there’s no simple explanation for what causes autism. We know that genes play a role, but they aren’t the whole picture. Environment also matters.

However “environment” can be a tricky term, as pediatrician Perri Klass recently noted in her New York Times column. In autism research, we use the word to refer to pretty much any influence beyond inherited genes—not just exposure to pollutants or other toxic chemicals.

In fact, the environmental factors that research most strongly links to autism are influences such as maternal infection during pregnancy (especially rubella), birth complications (especially those involving oxygen deprivation), and parental age at time of conception (dad as well as mom). Parents who wait less than one year between pregnancies may be at a slightly higher risk for having a child with autism. (Conversely, there is strong evidence that mothers who take prenatal vitamins before conceiving reduce the odds that their children will develop autism.)

Clearly, countless fetuses and babies are exposed to “environmental risk factors” such as these without ever developing autism. But if a child is genetically predisposed to autism, it appears that these influences further increase the risk. For this reason, we say that environmental factors increase the risk of autism rather than cause it.

Research has suggested that many other environmental, or nongenetic, factors may increase the risk for autism. But scientists can’t yet say whether these involve direct (versus coincidental) links. Such factors include a pregnant woman’s exposure to certain chemicals such as pesticides and phthalates (commonly found in plastics) or certain drugs such as terbutaline (used to stop premature labor), valproic acid (to control seizures), and some antipsychotics and mood stabilizers. Of course, in the case of medications, any possible increased risk of autism must be balanced against a woman’s medical needs—which can likewise affect the health of her pregnancy and children.

In addition, most environmental factors associated with autism appear to increase risk only slightly and only in combination with other factors such as genetic predisposition.  So it is difficult, in most cases, to pinpoint any one environmental influence. For these reasons, Autism Speaks continues to fund research on a wide range of environmental risk factors. Importantly, the more we learn about how these influences affect brain development, the better we can help the children, adults and families who are affected by autism.

Want to learn more about the research Autism Speaks is funding? On our Science Grant Search page, you can browse studies by topic and location. Finally, if you or your child is affected by autism, please consider participating in one of our clinical studies. Thanks, and please keep sending us your questions.

Has anyone studied how to help toilet-train children with ASD?

September 23, 2011 45 comments

This week’s answer comes from two of the clinicians who work within our Autism Treatment Network (ATN) and our Health Resources and Services Administration funded Autism Intervention Research Network on Physical Health (AIR-P). Both helped write the Autism Speaks Toileting Toolkit for parents, which will become available this fall.
Psychologist Terry Katz, PhD, of our Denver ATN Center

and

 Psychologist Amanda Santanello, PsyD, of the Kennedy Krieger Institute ATN Center in Baltimore, Maryland.

Around half of all children with an autism spectrum disorder (ASD) learn to use the toilet later than other children. In the Autism Speaks ATN/AIR-P Toileting Tool Kit due out this fall, we talk about why your child might have trouble and provide tips for achieving success.  Here are some important points:

Toileting Challenges with ASD:
* Physical:  Talk with your doctor about medical reasons that may make toileting more difficult for your child.  These can include constipation, and kidney, urinary tract, or bladder problems.
* Language:  Language delay can make it difficult for a child to ask to use the toilet.  Children may need other methods to communicate their needs.
* Fears:  Your child may be afraid of sitting on the toilet or hearing it flush.
* Body cues: Some children with autism have difficulty sensing the “need to go” and may not realize that their clothes are wet or soiled.
* Dressing: Can your child easily pull up and down his or her pants? This may need to be addressed.
* Need for sameness:  Your child may have developed a habitual way of toileting and, so, may resist doing so “your way.”
* Using different toilets:  Your child may have difficulty toileting in new places—such as school vs. home.

Tips for Parents:
Sit for six:  Set a goal for six toilet sits per day.  Start out slow.  First trips may only last 5 seconds.  Encourage boys to sit to urinate until they regularly have bowel movements on the toilet.
Don’t ask, tell:  Take your child to the toilet and tell them it is time to go.  Don’t wait for them to tell you that they need to go.
Stick to a schedule: Take your child to the toilet at the same times each day. Track when they urinate or have bowel movements and use those times if possible. Otherwise plan toilet trips around your usual routine. And think ahead:  Take your child to the toilet before he or she starts an activity that will be difficult to interrupt.
Communicate: Use the same simple words, signs, or pictures during each trip.  Talk with other people who work with your child.  Everyone on the team needs to use the same toileting communication plan.
Reward: Praise your child for trying. Give your child a favorite treat or reward right after going in the toilet.  Be matter-of-fact when accidents happen.
Consider comfort:  Your child needs to feel safe on the toilet, with feet supported for balance. Also address sensory difficulties your child may have with sounds, smells, lights, or textures in the bathroom.

These are just a few of the ideas we discuss in the forthcoming Autism Speaks ATN/AIR-P Toileting Toolkit.

Please remember: Toileting can be difficult for children with an ASD.  One study found that they needed a year and a half of training, on average, to stay dry during the day and more than two years to become bowel trained. So don’t become discouraged. Be consistent. Build routines. Talk with your doctor. And look for the launch of the Autism Speaks ATN/AIR-P Toileting Tool Kit. We’ll keep you posted here in the blog and on the ATN’s Tools You Can Use section of the Autism Speaks science pages.

The Autism Speaks ATN/AIR-P Toileting Tool Kit is the product of on-going activities of the Autism Treatment Network, a funded program of Autism Speaks. It is supported by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA), and Maternal and Child Health Research Program (MCHB) to the Massachusetts General Hospital. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the MCHB, HRSA, or HHS.

Your Questions Answered: ATN Toolkits

September 16, 2011 5 comments

Earlier week, Autism Speaks launched two new medical toolkits from its Autism Treatment Network (ATN). (Here’s our related news announcement.) Today, ATN Program Director Nancy Jones, PhD, answers your questions about these important new resources for parents and healthcare providers.

I have heard about the new toolkits but am not sure what they are exactly. How are the medical toolkits different from educational tools like the School Community Toolkit?

Autism Speaks is dedicated to developing resources to help families and individuals with ASD with daily living and healthcare. It does this through various programs including our Family Services department and our Autism Treatment Network (ATN).

All our “toolkits” and “tools” are free resources that families and medical professionals can download from the Autism Speaks website. Each provides information designed to empower families and individuals on the autism spectrum. The many toolkits now available through the Family Services section of the Autism Speaks website are designed to help families and individuals on the autism spectrum manage many of the challenges of daily life. For example, our 100-Day Toolkit guides families through the first hundred days after a child receives a diagnosis of autism spectrum disorder (ASD).

Because of the ATN’s mission—to improve the health and medical care of individuals with autism and their families—the ATN is focused on developing toolkits that focus on health-related issues. This week and over the coming months, the ATN is rolling out a series of these medical toolkits. Our just released medication decision did—“Should My Child Take Medicine for Challenging Behavior?—is an interactive toolkit with questions and worksheets that help families work with their doctor to make decisions that reflect the family’s goals and values for their child.

We’ve also released two versions of our “Taking the Work Out of Blood Work” toolkit—one for parents and one for healthcare providers. Both are filled with information and techniques for managing blood work, including printable materials that can help you prepare your child for a less-stressful, even stress-free, visit. Over the next few months, the ATN will be rolling out more toolkits for parents and healthcare providers. Look for them on the ATN’s “Tools You Can Use” page at the Autism Speaks website. Development of these tools was supported in part by a grant from the Health Resources and Services Administration (HRSA) and was made possible through the Combating Autism Act (CAA).  Please consider supporting the act’s renewal by visiting our

Combating Autism Reauthorization Act Action Center.

How do you select what topics you will develop a toolkit for?  

There are a number of ways that we get ideas for our toolkits. The primary way is direct input from the families and individuals we serve. In addition, ATN clinicians present ideas for topics based on their interactions with families in their clinics and the medical needs they observe. Our aim is that all toolkits respond directly to the needs of our community.

Will these tools be available in other languages?

Yes, most of our tools will become available in languages beyond English, starting with Spanish and French. These versions will come out in the months after each English version is released. Being able to translate these tools is one of the benefits of our HRSA funding. The 100-Day Toolkit is already available in Spanish; call 888-AUTISM2 (888-288-4762) to request a copy from an Autism Response Team coordinator.

If you have suggestions for healthcare tools families need, send us a message at atn@autismspeaks.org. Have more questions about resources? Our Autism Speaks Family Services Team can help! Contact the Autism Response Team (ART) at 888-AUTISM2 (288-4762) or email familyservices@autismspeaks.org.

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.

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.


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.

How common are seizures among people with autism, and what can help?

August 5, 2011 33 comments

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

Roberto Tuchman, MD, director of the autism program at Miami Children’s Hospital, and a member of the Autism Speaks scientific advisory committee; and

Michael Rosanoff, MPH, Autism Speaks associate director of public health research and scientific review.

Seizures are indeed more common in both children and adults on the autism spectrum. Independently, autism and epilepsy (seizures of unknown cause), each occur in around 1 percent of the general population. But epilepsy rates among those with autism spectrum disorders (ASD), range from 20 to 40 percent, with the highest rates among those most severely impaired by autism.  Conversely, about 5 percent of children who develop epilepsy in childhood go on to develop autism.

Autism and epilepsy share many similarities. Both exist on a spectrum—that is, the severity varies widely among those affected. In addition, a number of different abnormal genes are associated with increased risk of developing one or both disorders.

Importantly to families of children affected by both autism and epilepsy, we know that the combination is often associated with overall poor health and premature death.  So development of effective therapies is critically important. This goal begins with increasing our understanding of the shared brain networks, genes, and other biological mechanisms that underlie these two conditions.  Autism Speaks is currently partnering with the International League against Epilepsy and Citizens United for Research in Epilepsy to further this research.

At present the treatment of epilepsy in children with autism is based on the same principles as treatment of epilepsy in any child. Should parents suspect that their child is suffering seizures, the first step is to work with a pediatric neurologist to obtain a brain study called an electroencephalogram (EEG), which can determine if these events are indeed seizures. Treatment usually involves an antiepileptic drugs, which the treating physician chooses based on the type of seizure and the associated EEG patterns—to both maximize effectiveness and minimize side effects.  By themselves, anti-epileptic drugs fail to resolve seizures in around a third of patients. Such difficult-to-control cases sometimes respond to a so-called ketogenic diet (high-fat, adequate-protein, low-carbohydrate) and/or brain surgery.

Autism Speaks has more information on autism and epilepsy here. Got another question for our scientists and clinicians? Please post it in the comment section.

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