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Launching ‘Move the Needle’ – A conference to advance early detection and intervention

March 5, 2012 3 comments

Posted by Autism Speaks Chief Science Officer Geri Dawson, Ph.D.

I want to share with you the excitement I felt at this week’s strategic planning meeting for our new Move the Needle Initiative. Autism Speaks brought together experts in the field of early detection and intervention for autism spectrum disorder (ASD), with representatives of federal agencies such as the U.S. Health Resources and Services Administration, the Centers for Disease Control and Prevention and the National Institutes of Health to create a national plan for lowering the age of diagnosis for ASD and improve access to high-quality early intervention services for all children with autism.

While researchers have made great progress in developing screening and diagnostic tools, the average age of diagnosis remains stubbornly close to 5 years, even higher among some ethnic minorities. Even after their children are diagnosed, many families lack access to the best early intervention therapies.

Our meeting was a great opportunity for exchanging ideas between disciplines. We heard from family members, pediatricians, policy makers, clinicians and researchers who are evaluating the best ways to put effective strategies and tools into pediatrician offices and the broader community. Representatives from all part of Autism Speaks attended to help us identify ways to harness our powers together to “Move the Needle.”

Experts from outside of autism, including one from the field of breast cancer, shared their knowledge of effective ways to improve early detection and access to services. On the first day of the meeting, we heard about the latest findings on screening, diagnosis, early interventions, access to services in underserved communities and innovative technologies that have the potential to improve access among underserved children and their families.

On day two, we split into working groups to develop solutions to the barriers that have interfered with the delivery of earlier diagnosis and treatment in our communities. This included taking the first steps toward creating a new agenda for collaboration between public and private organizations. We brainstormed ideas on how this could be done as soon as possible by building on the tremendous progress of recent years.

Though I have only begun to pull together our thoughts and ideas, I want to share a few important issues that floated to the top of the conversation:

  • Family empowerment was a common theme. Studies clearly show that greater engagement and empowerment on the part of families decreases parental stress and increases satisfaction with services. Likewise, we know that children who have the best outcomes tend to be those whose parents are actively engaged in treatment. We discussed several strategies to  empower families.
  • We explored a concept we call task shifting, to help address service shortages in many communities. We recognize that, through training, we can tap professionals such as nurses, “birth-to-three” service providers and community volunteers to provide services such as screening and family follow up. This approach can provide families with more professionally delivered services than, say, the typical pediatrician can offer.
  • We agreed that we must harness the potential of technology. Smart phones, iPads and video conferencing are all ready to be developed as tools for improving access to services – especially important for underserved populations such as children in rural areas.
  • Recognizing that pediatricians play a central role in autism screening, we discussed many ideas for enhancing pediatrician awareness and skills, including their ability to connect families with the services they need.  

These are just a few ideas that came out of this inspiring meeting. It provided a great start to realizing our long-term vision of creating a national agenda through private-public partnerships that focus our investments in research and services in ways that will lower the age of diagnosis and improve access to quality early interventions for all children.

Your feedback means the world to us. Please leave a comment and send us an email to ScienceChat@autismspeaks.org.

Tune-in to NBC Nightly News Tonight!

February 17, 2012 Leave a comment

Tune-in to NBC Nightly News this evening, February 17, at 6:30 p.m., ET, for an interview with Geri Dawson, Autism Speaks Chief Science Officer. Dawson will discuss the Autism Speaks funded Infant Brain Imaging Study (IBIS) reported online today in the American Journal of Psychiatry. The new study suggests the changes in brain development that underlie autism may be detectable in children as young as 6 months of age, even before symptoms emerge.

For more details, here’s a link to a Science news item on the study.

New Findings Hold Promise for Revolutionary Pre-Symptom Screening

February 17, 2012 5 comments

 Posted by Autism Speaks Chief Science Officer Geri Dawson, Ph.D.

I want to share my perspective on an important new research finding released today. The study is headed up by Joe Piven, at the University of North Carolina, Chapel Hill. I am a co-author. The study followed the early brain development of 92 infant siblings, 28 of whom went on to develop autism spectrum disorder (ASD). Infants were imaged using MRI at 6, 12 and 24 months. Those who later developed ASD showed abnormal development of white matter fiber tracts by 6 months. White matter is the part of the brain cell, or neuron, that connects one part of the brain to another. (See our related news item here.)

This finding tells us that, very early and before the emergence of behavioral symptoms, the neural networks that connect different brain regions are not developing normally in infant siblings who go on to develop autism. Previous studies of both children and adults have repeatedly shown that autism involves abnormal connectivity between different brain regions. In fact, my colleagues at the University of Washington and I did one of the first studies to show this.

Now we are seeing that these changes are evident by 6 months of age. Future research is needed to help us understand what is causing these early brain changes.

Why is this finding important?  First, it helps us understand why people with autism have trouble with complex behaviors such as social interactions. Even simple social behaviors involve coordination of many brain systems. For instance, when something catches a baby’s interest, the normal response is a combination of gestures, babbling and eye contact. This requires several brain regions to communicate efficiently with one another.

Even more important, these results offer promise of using imaging results or other “biomarkers” to flag risk of ASD before symptoms become evident. In other conditions such as Alzheimer’s disease and Parkinson’s disease, such early biomarkers are being used to identify those at risk and allow treatment to start before symptoms appear – to maximize benefits.

We can imagine the day when noninvasive brain imaging is available for babies at high risk for autism (such as infant siblings of affected children). When the imaging reveals tell-tale abnormalities, these babies can receive medical or behavioral treatments that stimulate normal brain development. For example, a recent study by Marcel Just demonstrates that certain reading interventions for children with reading disabilities produce positive changes in the children’s brain white matter, or neural connectivity.

So, it’s reasonable to consider that some of the changes we are seeing in 6-month-old infants might likewise be improved through early intervention. Just’s study suggests that such “rewiring” may possible even later in life with interventions that support the connectivity between different brain regions.

Parents who are concerned that their baby might be at risk for autism may be wondering whether they should ask their doctor to order an MRI. The results published today are too preliminary for that. We are not recommending MRI screening for autism at this point. The best way to screen for autism at this time is to look for early behavioral signs (see Learn the Signs) and use screening tools such as the M-CHAT.

The research published today was funded in part by Autism Speaks and would not be possible without our community’s passionate and continuing support. Thank you.

If breakthroughs take time, how can research help families today?

February 9, 2012 10 comments

Posted by Autism Speaks Chief Science Officer Geri Dawson, Ph.D.

Dear friends,

Recently, someone posed a question that made me think hard about the immediate relevance of our research to those affected by autism. I had been explaining Autism Speaks’ new focus on developing medicines that, one day, will target autism’s core symptoms in ways that reduce disabilities and improve learning abilities. Someone commented that this would likely take years to accomplish. I had to agree. His follow-up question: So, how does research help families today?

For the answer, I found myself thinking about how the Cystic Fibrosis Foundation faced this same question decades ago. Like Autism Speaks, the Cystic Fibrosis Foundation was grappling with a disorder in its medical infancy. Cystic fibrosis was defined as a medical condition in 1938. The Foundation followed in 1955. At that time, the median age of survival for those affected by the disorder was just ten years.

The leadership of the Cystic Fibrosis Foundation knew they were grappling with a complex disorder that would take years to fully understand. So they developed parallel research efforts. One focused on the immediate development of improved diagnosis and treatments that could ease symptoms. The other focused on basic science with the goal of ultimately revolutionizing treatment with therapies that target the disorder’s root causes.

Their short-term efforts included support for a network of clinical care and research centers, a patient registry and studies that focused on improving treatment of chronic symptoms and associated medical conditions. Within a relatively short time, diagnostic methods improved and physicians began adopting new gold-standard practices, including new methods for fighting lung infections and improving lung function – all made possible through research that the Cystic Fibrosis Foundation helped support. The median age of survival jumped from 10 years to 37 years!

Meanwhile, long-term research efforts focused on understanding the causes and biology of cystic fibrosis. In 1989, scientists made major breakthroughs in genetic understanding. This, in turn, led to tremendous insights into the disorder’s underlying biology. Then, just last week, the FDA approved the first drug to treat the underlying cause of cystic fibrosis, rather than its symptoms. One doctor described how his patient was able to “shovel snow for the first time.” Not coincidentally, the Cystic Fibrosis Foundation had contributed millions of dollars to the development of this drug (Kalydeco). Its early funding had been essential to convince drug companies to make the larger financial investment needed to bring any successful drug to market. In the process, the foundation negotiated a deal to earn drug royalties, which will now be reinvested in further research advancements. Just as exciting, other “disease-modifying” cystic fibrosis drugs are moving through the research pipeline.

This is the same strategy that Autism Speaks is taking with investments in both research that improves quality of life in the short term and longer-term research that promises to transform how autism is treated.

Here are just a few examples of funded research projects with the potential to improve quality of life in the near future:

  • Identification of preventable environmental risk factors for autism spectrum disorder (ASD)
  • Validation of questionnaires that pediatricians can use to screen babies for ASD and, so, offer earlier intervention that will improve outcomes
  • Biomarkers (e.g. immune alterations) that could identify infants at risk for ASD
  • Development of effective early interventions for babies before the full syndrome develops
  • Support of technological inventions to enhance communication in nonverbal persons
  • Development of physician guidelines for assessment and treatment of medical conditions associated with ASD
  • Development of more effective treatments for associated conditions, including sleep disturbances, GI disorders, seizures and anxiety
  • Development of interventions to improve employment success and relationship skills in adults
  • Development of cognitive rehabilitation interventions for adults

Even as we support the development of these improved services, we are also investing in research that can identify the most effective ways to broadly implement new gold-standard practices to produce positive changes in community healthcare, education and support services for all persons who struggle with autism. This type of “dissemination research” also tells us how to best target limited resources.

Meanwhile, our long-term investments are advancing the understanding of autism’s underlying biology and the genetic and environmental factors that contribute to its development. These investments are exploring the role of the immune system, brain signaling pathways and the GI system, among other topics. Over the last five years, tremendous progress in these areas has advanced research to the point where we are now collaborating with industry to develop novel drugs with the potential to ease severe and disabling core symptoms – in adults as well as children. Fortunately, the tools we have available today will make drug discovery and development much faster than before.

Connecting the dots
At Autism Speaks, the research we fund interconnects with all parts of our mission, including awareness, advocacy and family services. Our awareness campaign, for example, is shaped by research that has revealed great disparities in access to services by communities such as ethnic-minority and low-income families.

Our advocacy of insurance reform, in turn, critically depends on research that demonstrates how early intervention improves outcomes. Research also plays a critical role in bolstering our advocacy for adolescents and adults. For example, a recent study demonstrated that adults with ASD face greater challenges in employment and social participation than do adults with other common disabilities. More importantly, this same study suggests that providing transition services immediately after high school is the most cost effective way to improve outcomes. We can use this information to advocate for improved services during the transition from high school to adulthood. Other currently funded studies promise to help us advance insurance reform to assure coverage of other interventions with proven benefits for school-age children and adults.

Similarly, Autism Speaks is funding research aimed at determining the real-world effects of proposed changes in the diagnostic criteria for autism. Will these new criteria exclude people previously diagnosed with ASD? Will they affect access to vital services? These answers will be crucial to our ability to advocate for any necessary changes in the proposed criteria.

While we see our research improving lives now, we remain committed to our long-term goals of revolutionizing treatment of ASD. I know in my heart that someday we will be making the kind of breathtaking announcement that we heard from the Cystic Fibrosis Foundation last week. The day is coming. In the meantime, we will ensure that our scientific mission remains relevant to our families today.

Warmest wishes,

Geri Dawson
Chief Science Officer, Autism Speaks

Transcript of Today’s ‘Office Hour’ Webchat with Drs. Dawson and Horrigan

February 2, 2012 1 comment


Thanks for joining today’s “Office Hour” webchat with Drs. Dawson and Horrigan . Here is the transcript.

Please join us next month (March 1st) and every first Thursday at 3 pm Eastern. Look for the “Live Chat” tab in the left column of our Facebook page: https://www.facebook.com/autismspeaks

2:53
Hi everyone! We are just about to start!
2:56
Comment From Tyler Munoz hi.
2:56
Comment From Tinagood afternoon doctors
2:57 Hi Everyone! This is Dr. Dawson. We will be getting started in just a minute or so. We are glad you are here.
2:59 Hi – this is Dr. Horrigan – I’m here , too – thanks for attending today’s ‘office hours’
3:02 Advance question from Lisa, teacher of students with ASD: I have heard a few things…completely rumors…about how gluten-free diets affect those with autism. What are the affects, positive or negative, if any. Thanks!
3:02 Lisa: This is Dr. Horrigan. Yes, for some youngsters with autism, gluten-free diets can be helpful, but it is a minority rather than a majority that benefit, and it is usually youngsters that have a specific family history of GI problems and difficulties with food sensitivities, including more explicit problems like Celiac sprue related to gluten. It is worth having a discussion with the child’s physician about the potential utility of elimination diets (like gluten-free) if the youngster has persistent gastrointestinal problems and the family is motivated to shift (oftentimes the whole household, to assure the child’s adherence) to the specialized diet. The participants have to watch out, though, because it is relatively easy to become deficient in some essential vitamins and minerals if a rigorous elimination diet is pursued – so supplementing with essential vitamins and minerals would be important, too.
3:04
Comment From Tina My son is 12 years old and is still in pull ups, he knows when he needs to go to urinate but not to do a bowel movement. Is there anything I can do to make him more aware. We sit him on the toliet several times a day but with no luck. If you have any suggestions please let me know. Thank you
3:05 Hi Tina, There are some good books that offer strategies for teaching children with autism to use the toilet. Here is one suggestion: http://www.amazon.com/Toilet-Training-Individuals-Autism-Developmental/dp/1932565493 . We will be posting a tool kit on toileting on our website soon so keep your eyes out for that. YOu might also want to check with your behavior therapist, if you have one, who can develop a behavioral plan for teaching toileting.
3:06
Comment From CaraMy son is 6 and the dr prescribed him intuniv to help with some of his behaviors. Is this a typical drug? Do the drugs help?
3:07 Hi Cara – this is Dr. Horrigan – Intuniv (guanfacine) is becoming more popular. It is formally indicated for the treatment of ADHD, and it is often helpful in combination with stimulant medicines like Ritalin or Adderall. But it can be helpful on its own to soften difficulties with impulsivity and excesive emotional outbursts. It doesn’t work for everyone, though, and it has its own unique side effects, especially if the dose is too ambitious (e.g. sedation/sleepiness/fatigue, headache, and there is even a potential for decreased blood pressure). So it needs to be taken under a doctor’s supervision. Definitive studies in the area of autism have yet to be completed at the time of this writing, but they should be forthcoming.
3:08 Dear everyone, Many of you have had questions about the new revisions to the diagnostic criteria for autism. Below is our policy statement on this issue which describes the issues that we all are concerned about and what Autism Speaks is doing to ensure that the revision doesn’t end up excluding people from obtaining the services they need.
3:09 Autism Speaks Statement on Revisions to the DSM Definition of Autism Spectrum DisorderAutism Speaks is concerned that planned revisions to the definition of autism spectrum disorder (ASD) may restrict diagnoses in ways that may deny vital medical treatments and social services to some people on the autism spectrum. These revisions concern the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), scheduled for publication in spring 2013.We have voiced our concerns and will continue to directly communicate with the DSM-5 committee to ensure that the proposed revision does not discriminate against anyone living with autism. While the committee has stated that its intent is to better capture all who meet current diagnostic criteria, we have concluded that the real-life impact of the revisions has, to date, been insufficiently evaluated.Autism Speaks is committing substantial effort and resources to fund definitive research to ensure that the final definition of ASD meets the following criteria:1. Assures that all those who struggle with autism symptoms receive the treatment, services and benefits they need, without discrimination;2. Affirms that ASD can be a lifelong diagnosis, while allowing for treatment and services to change with an individual’s evolving needs;

3. Supports the importance of early ASD diagnosis and treatment as essential for helping individuals achieve their best possible outcomes and avoids creating barriers.

As the proposed diagnostic criteria are evaluated over the course of 2012, Autism Speaks will be working with leading experts in the field as well as community stakeholders to evaluate the potential impact of the DSM revision on our community and to ensure that all necessary adjustments be made to assure access to vital treatment and social support resources for all those who struggle with the symptoms of autism.

At the same time, we will actively serve as an informational resource and advocate for all members of our community, as they seek to make their needs known and understand how the evolving changes will affect them and their families.

3:10
Comment From Nancy MBI hope you can help,my daughter was diagnosed with ADD when she was about 2 now she is 20 and people keep telling me to have her checked because the way she has always been she could have a form of autism what should I be looking for ?
3:11 Dear Nancy, This is Dr. Dawson. Does your adult daughter have significant problems with social interaction, such as problems with eye contact, difficulties forming friendships, or trouble with conversational skills? Does your daughter have overly focused interests or engage in repetitive behaviors? If so, she may have an autism spectrum disorder. Having a diagnosis may open the door to services that could help. Check the following link to find resources in your area:
3:11 http://www.autismspeaks.org/family-services/resource-library
3:12
Comment From GuestSo, can I just ask a question anytime? Never done this before
3:12 Dear Guest at 3:02 – Yes- please just submit your question.
3:14
Comment From Tina SOur son has PPD and is 10 years old. He continues to write letters backwards and if something has a price of say $19 he says “$91″ We have asked and asked for him to be evaluated for dyslexia. Does anyone else have children with symptoms like this? Should we continue to pursue dyslexia along with the PPD or is the backwards spelling and seeing part of the PPD?
3:14 Dear Tina, A child with autism can also have dyslexia, that is, trouble with reading. It is important that you have your son evaluated by a person who has expertise with dyslexia so that you can provide treatment for his reading difficulties along with treatments for his autism.
3:15
Comment From LinneaI have a question: My son has been diagnosed with PDD-NOS and an anxiety disorder- NOS, but his OT has raised concerns about SPD as well. All the symptoms seem to overlap – how can you determine what is caused by what? Or how can a doctor tell if a child has one disorder or another (or both). We are going to a specialty clinic in about 6 months and I’m hoping to get some definitive answers.
3:16 Dear Linnea – this is Dr. Horrigan – I am assuming that SPD refers to “sensory processing disorder”, is this correct? There is a suite of specialized, hands-on tests that occupational therapists use to diagnose under- or overactivity to sensory stimulation, whether it is touch or heat/cold or sound, etc. I agree with you that it can be difficult to disentangle sensory prcessing problems from free-standing difficulties with anxiety. A lot of times it is important to determine if there is a high risk of anxiety disorders in an individual with autism based on one’s family history of anxiety, in which case, behavioral and medocation treatments (e.g. SSRIs like Zoloft/sertraline) can be really helpful, and you can get more traction from the desensitization techniques used by occupational therapists (e.g. brushing, as one example).
3:18
Comment From Loriif a childs does not show GI problems will a GFCF diet help in any way?
3:18 Hi Lori, This is Dr. Dawson. Some parents report that a GFCF diet can help even though specific GI symptoms are not present. If you decide to try a GFCF diet, be sure to have someone who doesn’t know whether or not your child is on the diet keep a record of your child’s behavior (such as your child’s teacher). This way, you can objectively determine if it is helping. Also, check with your pediatrician about monitoring your child’s nutritional intake to make sure he or she is getting the nutrients your child needs.
3:20
Comment From SandhyaHow do we for sure know that my kid has high functioning autism and Are there any tests to find out (lab tests) and how do we know which food are good and bad for them ?
3:21 Dear Sandhya, This is Dr. Dawson. The diagnosis of autism is made on the basis of behavior observations. There are no specific lab tests for autism. Once a child has been determined to have autism, based on behavior, your doctor would want to order specific genetic tests to determine if there is a genetic cause. Other lab tests are sometimes ordered. If you have concerns about your child’s eating, you should talk to your child’s pediatrician. Autism is often associated with difficulties in eating, such as food allergies and food sensitivities.
3:22
Comment From GuestMy son won’t eat for days or weeks at a time. We are waiting for our appt at CHOP’s feeding clinic, and I keep hearing how awful or intense it is. What can I expect? Will he have to go inpatient?
3:24 Dear Guest – this is Dr. Horrigan – that must be very stressful, having such unpredictably as to when your son will/won’t eat. It would be good to know exactly where your son is on the CDC growth charts, and what sort of medical workup has ben done so far. . I think at CHOP they will start off with straightforward things like a flat plate x-ray of your son’s abdomen (it’s painless) and they will obtain a comprehensive dietary history. They will also look at what runs in the family (e.g. things like Celiac sprue, irritable bowel, etc.). If there is specific evidence for a malabsorbtion syndrome, they will do more intensive things. They may also have to look more specifically at endocrine issues which usually means some blood tests (the blood volume they draw isn’t too bad, and they shoudl use topical anethetics or numbing meds) and they may also want to do an MRI (e.g of your son’s head), which is challenging because it can be loud and long and he will have to keep still – often means sedation has to be used.
3:25
Comment From EnidCan you recommend me a good book on autism? This topic is new for me and I don’t know anything. I will love to learn more. My son is 3 years old. I will like to help him and understand him. I am thinking to buy these two books: 1001 Great Ideas for Teaching and Raising Children with Autism or Asperger’s, / Ten Things Every Child with Autism Wishes You Knew. Please help me.
3:25 Dear Enid, This is Dr. Dawson. The Autism Speaks website is full of information and resources, including a list of books on different topics. Look under “What is Autism” and “Family Services” for information. I really like Lynn Koegal’s book – Overcoming Autism.
3:27 Dear everyone, I notice that there are many questions about GI problems, constipation, toileting, and eating. On our next webchat (next month), we will have a gasteroenterologist with expertise in autism on this webchat so we can provide more detailed information. Autism is commonly associated with Gi problems and it is important that these be addressed by a gasteroenterologist. These problems can interfere with a child’s ability to learn and behave well.
3:29
Comment From Guesti have an 8 yr old with bed wetting as well
3:30 Dear Guest – this is Dr. Horrigan – I may have missed the first part of the question or the discussion thread about bed-wetting. But what comes to mind is that there are basic behavioral manuevers that can be helpful (e.g. humane versions of fluid restriction before bed, and also humane use of bell and pad/alarm techniques – the latter can be tricky). It is also important to make sure tht he is not constipated as this can cause overflow incontinence even at night. There are some meds that can precipitate enuresis (e.g I am thinking of unpredictable responses to meds given at nightime like risperidone and some of the SSRIs), so you have to make sure that you are not dealing with a medicine side efect. That said, it is possible that other meds like DDAVP pills (0.2 to 0.4 mg) or low-dose imipramine (25 mg or less) can be really helpful if the bed-wetting is really causing a lot of distress.
3:31
Comment From JillHello, My son just got diagnosed with Autism, he is 4 years old. One of our biggest challenges right now is his sleep pattern. Lately he will stay till 10 or 11pm, wide awake, and then sleep for a few hour incriments, he wont sleep in his bed, unless we put him there after he falls asleep, and even then it is only for a few hours. Any helpful hints ? It is getting really difficult on us, and we have 2 other children that are in elementary school…who need their sleep.
3:31 Dear Jill, This is Dr. Dawson. Sleep problems are very common in children with autism. On February 14th, Autism Speaks will be releasing a new tool kit for families and providers on how to address sleep problems in children with autism. Check back on our website on the 14th. I think you will find it very helpful. We are funding many studies on sleep, including treatment studies.
3:34
Comment From JoshuaHello, Our son is four years old and his primary symptom of autism is his use of delayed echolalia. Although it seems to be very well documented that this is a major symptom of both autism and tourettes, there seems to be little research regarding what helps “cure” it. Everything just says, “it decreases as functional language increases.” Do you have any helpful information related to delayed echolalia and the treatment?
3:35 Dear Joshua, This is Dr. Dawson. It is useful to understand what is the function of the delayed echolalia for your son. Is it a way of communicating his needs and wants? If so, then modeling a simple phase for him to use instead of the echoed response (ideally, that uses part of his response) and having him repeat the appropriate phase before getting what he wants may help. Is it a repetitive behavior? Distraction and involvement in other activities could be useful. Is it a sign of anxiety? Then, addressing the source of anxiety can help. It is true that echolalia does tend to naturally decrease as functional language develops.
3:36
Comment From LoriOur son is 8 very HIgh functioning but is having a hard time focusing at school what could help with this. I hate the thought of meds.
3:37
Comment From Guestlisa pa i have a 8 yr old with autism and a 15 yr old with tubersclerosis and i belive he is on the spectrum but drs only seem to stop at the tsc i i was wondering how to approach treatment of his autism with tsc
3:38 Dear Lisa, This is Dr. Dawson. Many children with tubersclerosis also have autism and it is important that both diagnoses are made. This will allow your child to receive specific interventions to address the symptoms of autism (e.g. social impairments) that not all children with TSC have.
3:38 Dear Lori – this is Dr. Horrigan – does your son have an IEP or 504 plan that includes the classic accomodations for indivduals with ADHD? I am thinking about the use of a carrel, as needed, and the proactive use of verbal cues as transitions occur in the classroom, as well as electronic desktop cueing devices triggered by the teacher or assistnat. In terms of meds, I know how you feel, in terms of your wariness, although sometimes you can get great benefit from the judiciosus and thoughtful use of stimulants, with the knowledge that each person has unique responses to each of the stimulant formuations/preprations (e.g. it is not just about Adderall or just about Ritalin, there are a whole range of choices), and this is important because soemtimes a youngster with HFA can get a very significant effect/benefit from a low dose of a carefully chosen med
3:40 Advance question from Pamela: My question is…is there any link between taking antidepressants while pregnant (2nd & 3rd trimester)(SSRI) and autism in the newborn child?
3:41 Hi Pamela. This is Dr. Dawson. We have written previously on this topic, and I refer you to that blog (link below). This is a question you should discuss with your physician because each woman’s situation is different in terms of weighing the risk and benefits.
LINK: (http://blog.autismspeaks.org/2011/09/02/can-my-taking-medication-during-pregnancy-cause-autism-in-my-baby/).
3:41
Comment From KathleenMy son is 3 years old. He did not start speaking until he was 2 and 1/2 with the aid of Speech and Occupational therapists and a special education teacher. I have been told he has SID (sensory integration dysfunction) Some sites say SID is a disorder and some say it is a symptom of autism. I have concerns that he is on the spectrum at some level because of some of his behaviors but only 1 of his teachers agree. the other 2 and his pediatrician say i am “overreacting”. Who is right? Who should I listen to?
3:42 Dear Kathleen, Some children with autism have sensory integration dysfunction but not all do. Children with autism tend to have more significant difficulties in social interaction (e.g. eye contact, forming friendships, interactive play) and also have repetitive behaviors. You should have your son evaluated by a doctor with expertise in autism to better understand his diagnosis. You can check on this link for resources in your area:
3:42 http://www.autismspeaks.org/family-services/resource-library
3:45 Advance question from Andrew: Where can we find career guidance in the autism research field?
I’m a 24 year old patient advocate. After spending 3 months on a Nation Outdoor Leader School trip in India, on which I watched a classmate pass away, I have a renewed sense of responsibility to my community. How can I help? I want to start getting my undergraduate degree this semester, despite the deadlines having been passed for applications (I just got home from India). I want to know where I should start, what types of paths are open to me, and other ways that I can help.
3:46 Dear Andrew. This is Dr. Dawson. There are many ways to get involved! You can volunteer at a local program for children with disabilities, become an advocate (see Autism Votes LINK), join a walk for Autism Speaks (LINK), or get involved with other college students (Autism Speaks U LINK). You can find the local groups who are providing early autism intervention services and train to be a therapist. There are many career options including becoming a clinician (physician, psychologist, occupational therapy, speech-language therapist), a teacher, a scientist, or lawyer, to name a few. It truly takes a village to support people with autism and other disabilities. I’m glad you are eager to help.HERE ARE THE LINKS:
Autism Votes:http://www.autismvotes.org/site/c.frKNI3PCImE/b.3909853/k.BE44/Home.htm
Autism Speaks U:http://events.autismspeaks.org/site/c.nuLTJ6MPKrH/b.4385867/k.BF59/Home.htm
3:46
Comment From MelissaMy 11 year old son was just diagnosed with Asberger’s what are the best programs for him to get into especially for his socialism skills? What can I do to help him control anger issues?
3:48 Dear Melissa, Children with Asperger syndrome are often helped by behavioral interventions that focus on social skills training. There are also interventions (Cognitive behavioral therapy) that can help with anxiety which is common among children with Asperger syndrome. Anger/emotion-regulation is often a challenge. Again, there are behavioral strategies that can be used to teach your son to better manage and appropriately express his feelings. Clinical psychologists are typically well-trained in these therapeutic methods. You should check in your area for a clinical psychologist who works with children and/or chidlren with Asperger syndrome and also check out the resources in your area on this link:
3:48 http://www.autismspeaks.org/family-services/resource-guide
3:49 Hey everyone: When we posted the link to the resource “library” earlier, we meant THIS link to the resource “Guide.” Here it is again: http://www.autismspeaks.org/family-services/resource-guide
3:50
Comment From TrishMy 3 year old daughter has autism, and she will not sleep much. Hardly ever, no matter what I do. And when she manages to fall asleep she only sleeps a couple hours. I’ve tried schedules, melatonin, wearing her out, relaxation techniques. Is there anything that you could reccommend that works especially well to make autistic children sleep? I’m just so tired!
3:52 Dear Trish – this is Dr. Horrigan. I know it is very very tough to have a child that awakens frequently duirng the middle of the night. It will get better, I promise you, although it may take time. Behavioral contributions are always important to look at. One thing to think about is whether there are unitended reinforcers (rewards) that are occurring on a behavioral level that might be reinforcing her middle-of-the-night awakening (inlcudes letting her get in bed with you after she awakens). I am sure you have already thought about this. The other issue is whether she is accustomed to only a very specific set of cues (e.g. a CD with lullabies playing as a backdrop), associated with being able to fall asleep initially, that can be readjusted. In terms of meds, melatonin only helps with sleep onset, not continuity of sleep (staying asleep) and it shouldn’t be given during the middle of the night (e.g. after midnight) – it can make things worse the next night if it is given that way, because it can distrub the individual’s circadian rhythm. I would have a consultation with a sleep specialist, if you can do that, and this will allow you to discuss other medication possibilites that may be more effective with middle-of-the-night awakenings such as off-label miniscule doses of trazodone or mirtazepine or doxepin, although these meds for a 3 y.o. require a sleep specilist to be involved. You also could get some good behavioral tips from a sleep specilaist that are tailored to your daughter’s unique sleep habits. By the way, on February 14th, we will put up on our web site a “tool kit” on sleep hygiene that I think will be very helpful to parents.
3:53
Comment From GuestHi, my son has ASD, he is 4 sometimes appears to have visual stims when asked to tasks or when he wants something. Is this a behavior or part of the spectrum. His teachers special preschool are stumped?
3:54 Hello Guest at 3:12. This is Dr. Dawson. Is it not common for a child with autism to engage in self-stimulatory behavior when he is nervous, upset, excited, frustrated, or even just wishes to communicate something. It would be helpful to try to understand what is the function of the visual stims. You can do some detective work by recording when it happens and then making a guess what the function is. If your child is trying to communicate something (e.g. This is exciting! or I don’t like this) then you can model for your child the appropriate behavior. If the function of the behavior is to calm himself, then using other ways of calming your child may help. The fact that your child stims when asked to do a task suggest that he might be telling you that the task is either something he doesn’t like or alternatively something he is excited about. If he doesn’t seem to like the task, consider ways of changing the task to make it more appealing (easier, broken into smaller parts).
3:59
Comment From StephanieMy 20 month old daughter has had 3 EEGs and her ped neurologist said they show “sluggishness” with her brain activity. No definite diagnosis yet. However, he suggests she be seen by a Dev ped. We have an appt end of March. I’ve searched and can not find any relation between sluggishness and ASD. Any thoughts?
4:00 Dear Stephanie – this is Dr. Horrigan – I think they probabaly meant “slowing” rather than “sluggishess”, with regard to the wave length frequency of the most common waves seen on your daughter’s EEG. It is not a very specific finding, frankly. It would depend on whether the slowing is localized to a specific part of her brain, or if it is generalized (all over), to know if it is a patten that is clinically meaningful and amenable to treatment (e.g. medicines, like anti-seizure meds). . Slowing is associated nonspecifically with developmental and intellectual disabilites, and may (or may not) be associated with a future risk of seizures. Seizures are diagnosed clinically, by the way (e.g. by observing them directly in the affected individual). Enriching your daughter’s daily life with diffenet types of sensory stimulation (presuming she can tolerate this) and behavioral therapies (e.g. ABA) can also be associated with the lessening of EEG slowing, and rehabilitation, in general .
4:01
Comment From Lori GraysonAs my son gets older, he is now 10, I find he is more forceful with having to maintain an exact schedule and even less flexible than when he was more non verbal. Do these children ever become more flexible with changes. He also still has separation anxiety hen it comes to me, not so much my husband.
4:01 Dear Lori, As your son gets older, he may be developing a stronger sense of what he like and doesn’t like and now has the ability to express himself. So, that may be part of what you are seeing. You mentioned, however, that he is also showing some symptoms of anxiety and it makes me wonder whether your son’t increase in rigidity might be a part of an anxiety disorder. Autism is often associated with anxiety symptoms. I would encourage you to have him evaluated by a child psychiatrist or clinical psychologist. There are specific interventions, such as cognitive behavioral therapy, that can help. In addition, medications are often helpful.
4:03 Advance question from Krista
My 14 yo son has a diagnosis of Asperger’s. Last year he had his brain mapped with an EEG, and subsequently did 16 weeks of neurofeedback therapy. My son has done many, many therapies over the years, and neurofeedback was the first (other than speech articulation) that seemed to make any difference. His interest in engaging with others and his ability to socialize successfully increased. His executive function skills improved. Family members and others, including his music therapist, noticed as well–even his guitar playing improved noticeably. What does the research say about neurofeedback in ASD individuals? Is this an area of research you are funding?
4:03 Krista: This is Dr. Horrigan. It’s really great that your son is doing so much better, and if neurofeedback played an important role in getting him there, then I think that is wonderful. There are some small studies that have reported positive results with neurofeedback in individuals with autism, with success rates ranging from 1 in 4 to 4 out of 5. But it is not clear to me if publication bias is playing a role (e.g. only the positive studies get written up and published). My experience has been closer to the 1 in 4 success rate, and success seems to be very dependent upon the expertise and charisma of the trainer, the commitment of the family, and the level of disability of the individual with autism (lesser levels of disability seem to be associated with greater probability of improvement with multiple rounds of neurofeedback). It is also expensive, and it can be very tough to get insurance to pay for it, so that is a pragmatic consideration. If a family wants to pursue neurofeedback for their loved one, I would recommend working with the neurofeedback therapist to articulate a very clear idea of what success needs to look like, even after the first 5 sessions, so that they can get out early, before having to spend too much money, if the ultimate likelihood of success looks like it is going to be limited. One important upside of neurofeedback, when it does work, is that the rates of sustained improvement are quite good and success can be sustained with periodic ‘booster’ sessions
4:06
Comment From ShellyMy son is 3 and was diagnosed in August. We have been told by numerous people to cut out any red food dyes from his foods. Woudl this be beneficial? He had one episode of vomiting after drinking a juice loaded with red dyes and everyone is telling us to just cut them out, but everything has red dye in it that kids want to eat. Any advice would be great. Thanks!
4:06 Dear Shelly – this is Dr. Horrigan – there is decent evidence that a subset of kids (with or without autism) are senstiive to artifical food colors and dyes. Some red, yellow and blue dyes are especially likely to have this type of association in susceptible individuals. Oftentimes, after incidents like the one that you described (the vomiting), the only way to get close to a definive answer for your child is to scrupulously eliminate that potentially offensive color (e.g. that red dye, in this instance) and then see if things settle down for your son. I know it is a hassle because red food dye/color is failry ubiquitous, all over the place in foods that we all eat, but it is worth trying to get it out of your son’s diet to the extent that you can, to test out your theory. You could be right.
4:08 Advance question from Jolanta:
Hello. My son who is 6 years old is autistic. We live in the United Kingdom. We are considering having another child, but afraid of a possibility that a new child would develop autism. What are the chances? I’m 39 so I need to decide soon. Thank you.
4:09 Hi, Jolanta. This is Dr. Dawson. In the past year, there was a new study that was published that examined the risk for autism spectrum disorder in younger siblings. Although each individual family’s situation is unique, at a population level, the overall risk of a sibling of a child with autism developing the disorder is about 19%. We have summarized the new information on risk rates and had a webchat specifically devoted to that topic. I hope you find this information useful.
Here are the two links:
Summary: http://blog.autismspeaks.org/2011/08/15/risk-of-autism-in-siblings/
Webchat: http://blog.autismspeaks.org/2011/08/16/increased-risk-live-chat/
4:11 Advance question from Desray: Hi my son is 5 an half yrs old. He’s stll in nappies and I’m finding it very hard to get him out of them. The problem I’m havin is that,he nows how to wee in the toilet but he does not want to put underpants or shorts on after his visit to the loo. I’m realy having a hard time dealing with this disorder. He’s my only child and I’m scared for him. I would also like to no if Risperdal or Ritalin is ok for Autistic kids to take. Sometimes Jose has some serious meltdowns sometimes and I feel like I need to give him something. Plse help. I’m from South Africa where we don’t have much assistance. Thank u for all that yull do. God Bless.
4:12 Dear Desray, This is Dr. Dawson. It is terrific that your son is now able to wee in the toilet. That is half the battle! I suggest that you create a series of pictures (these can be photos, drawings, or clippings from magazines) that illustrates the series of steps involved in going to the loo. This would include not only weeing in the toilet, but also pulling up his pants, washing his hands, and so on.Below is a link that describes how to develop these visual supports. You should begin by giving him a reward (this can be a physical reward, praise, food, whatever he likes) after he wees in the toilet. Then, slowly add each new behavior over time, encouraging him to carry out the next step and then rewarding him. Over time, you can start to withdraw the amount of help you provide and rewards for each step as he becomes more capable of doing it on his own. Keep in mind that pulling on his underwear and shorts requires many skills – motor skills and thinking skills – so you may need to provide both the pictures and physical help for a while.Regarding your son’s meltdowns, you should start by keeping a record of when he has those meltdowns and see if you can figure out why. Is it because he is tired? Is there a specific activity or environment that is upsetting? Is he trying to ask for something but doesn’t know how? Use this information to make adjustments in his environment and routine to try to avoid the things that are upsetting. If he is frustrated because he is trying to request something, prompt him to use a more appropriate way of expressing his needs (he could point to a picture, touch what he wants, or say a simple word) and then immediately reward him for using the more appropriate behavior. Talk to your son’s teachers to see if they have suggestions too.Autism Speaks will soon be publishing a new tool kits for handling challenging behaviors – so keep looking on our website for that. We also have a tool kit that can help you decide whether you should consider medication (LINK below). It is best to see if behavioral strategies are effective before turning to medications.HERE ARE THE LINKS:
Visual supports tool kit:http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use/visual-supports
Medication decision tool kit:http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use/medication-guide
4:13
Comment From MaryMy son is now 23 has aspergers and has had stomache problems all his life I now have done some research and have him on the following B12 500mg, super b complex w/ vitaminc and folic acid , Acetyl L-Carnitine 400mg. Taurine 500 mg,Vitamin D-3 5000 iu, Co-Q Max plus Ginkgo.Advanced Acidophilus Plus , Prevacid 30 mg And Prozac 60mg We have seen great improvement since we started especially in the stomache area and he seems to be more talkitive so much so we are now doing twice a day . He used to drink 2 Monster drinks a day and ask me why he cant feel normal like when he drinks those drinks so I researched whats in them Whats your thought on this and is there anything that you would add?
4:14 Dear Mary – this is Dr. Horrigan – it sounds like your son is feeling a lot better and i am very grateful for that. In terms of what he is taking, the only thing that came to mind immediately is to make sure that he is not too overboard on the B6 (e.g. I usually go up to 100 mg, max). I would need to know the exact compostion of the Super B to give you a more sophisticated comment about other potential yellow/red lights. The Monster drinks are probably ‘benficial’ for your son due to their load of caffeine and sugar. I would rather he try coffee, if he really feels that needs that extra benefit provided by cafeine. Just being practical here…
4:15 Advance question from Mel:
Hi, I never done this before but I was wanting to ask a question. I have a 12 year old son with autism and a 4 year old daughter who I think has autism. We’ve had her tested and she shows a lot of autistic traits. I was told that because she can respond when they say hi, how are you, that she isn’t autistic at all. Is it possible that they misdiagnosed her? Should I try to find somewhere else to take her? Thank you.
4:15 Dear Mel, This is Dr. Dawson. I’m glad you asked your question. If you feel that your daughter may have autism and the doctor you saw missed it, you should seek another opinion. Siblings of children with autism sometimes have difficulties in areas related to autism, such as social and language skills, without meeting full criteria for autism. Even if your daughter is found not to meet criteria for autism, she should receive help in the areas she has difficulty in, whether that is language, learning, or social behavior.
4:17 Advance question from BA Travis:
I am looking to see if there has been any research or if any of the Drs. would be able to tell me about links to high exposure to pharmaceuticals and ASD.
The background is while I was pregnant I was working in a pharmeceutical facility that manufactured over the counter cold and pain medications. I was exposed daily to high volumes of raw powdered chemicals. I asked to be transfered but was denied. We were required to ware dust masks when pouring the powdered materials but that was it. I had a healthy baby after over 20 hrs of labor but by 2.5 he was diagnosed with being high functioning Autistic. At 5 he is on par educationally for his age but tests at around 30 months for speech and has trouble with focusing on the task at hand. Before I left the company over a year ago an environmental quality manager was brought in to do air testing and before long all personel working in the same areas as I was were being required to ware tyvek suits with battery operated air respirators.
The thought has been in the back of my mind but not being able to find anything online on a link but after the drastic change in the way the employees now have to handle the product has brought that thought to the forefront.
Any thoughts?
4:17 Dear BA Travis: This is Dr. Horrigan. While you have provided a limited amount of information here, it does sounds suspicious that the company changed its policy to require the use of specialized equipment by workers ostensibly to prevent hazardous exposure to something in the workplace. I would need to know specifically what chemicals that they had you handling, to have a more sophisticated insight into the potential relationship of in utero exposure to those chemicals and neurodevelopmental disorders. This is the type of inquiry that we are very interested in and we have funded and are funding several lines of research to help identify the relevant prenatal risk factors arising from the environment that are associated with autism.
4:19 Moderator’s note to BA Travis: You can send more info/reply after the chat to sciencechat@autismspeaks.org.
4:20 Advance question from Vanessa:
My 7 year old son has been diagnosed with pdd-nos, anxiety and adhd. Currently he is having a hard time at school connecting with other children. He is obsessed with Hello Kitty and gets picked on by the kids in his class. Recently he is telling people he is a girl or that he wishes he was a girl. He is also introducing himself as his younger brother. I can kind of deal with all this but he seems to be increasingly aggressive lately and hurting himself. I am concerned because I am afraid he will really harm himself or another student. Is there anything I can do to help him? Usually he is pretty easy to work with and calm down but recently he just seems so angry. He is currently on a low dose of Zoloft and Intuniv.
4:21 Vanessa: This is Dr. Horrigan. The first thing that question that came to my mind is whether there are any easily identifiable factors occurring in your son’s school environment that are causing him to feel so distressed. For example, I am worried that he may be getting bullied, perhaps by multiple classmates. And it may be sneaky bullying, it’s hard to tell. Either way, any type of bullying would be completely unacceptable. Have you had a chance to discuss the issue of triggers for his aberrant behavior with his teacher(s), and/or the Exceptional Children’s coordinator, and have you had a chance to observe him in the school setting yourself, to see what may be associated with his distress? I also wonder if they might be pushing him too hard, with regard to the curriculum. Again, it’s hard for me to say. You need more information from the people at school. In terms of the medications, I am not sure how long your son has been taking Zoloft and Intuniv, but both can cause paradoxical heightening of anxiety as well as paradoxical worsening of irritability (it is more common when first starting Intuniv, in my experience). If you suspect that the medications may be worsening things, then talk to your son’s doctor and discuss a trial off one or both of the medication(s).
4:24 Thank you all so much for joining us, and we’re sorry we weren’t able to get to all your questions. Please join us again next month, on March 1st, with your questions. We’re going to invite a gastroenterologist with expertise treating those with autism to address your many GI concerns. Thanks again and be well!Dr. Dawson and Dr. Horrigan

Got Questions? The Doctors Will Be In!

January 31, 2012 14 comments

Please join us Thursday Feb. 2nd for “The Doctors Are In!” the next in our ongoing series of monthly webchats co-hosted by Autism Speaks Chief Science Officer Geri Dawson, Ph.D., and our Assistant Vice President, Head of Medical Research Joe Horrigan, M.D.

Held at 3 p.m. Eastern (2 Central/1 Mountain/noon Pacific), this monthly “office hour” will provide ongoing, personal access to two leading clinical experts in the behavioral and medical treatment of autism. Dr. Dawson is a licensed clinical psychologist, and Dr. Horrigan is a board-certified child and adolescent psychiatrist.  Both have extensive clinical experience treating individuals with autism spectrum disorder (ASD).

Drs. Dawson and Horrigan welcome your questions on behavioral therapies, medical issues and other concerns related to autism. However, the guidance provided on the webchat is not meant to substitute for care by a personal physician and other appropriate care providers.

This and future webchats can be accessed via the “Live Chat” tab in the left column of the Autism Speaks Facebook page. You can also set up a personal email reminder with direct link here.

We hope you’ll mark it on your calendar:

The Doctors Are In!
* The first Thursday of every month
* 3 p.m. Eastern (2 Central/1 Mountain/noon Pacific)
* Join via the Live Chat tab at https://www.facebook.com/autismspeaks.

Read the transcript of last month’s “Office Hour” webchat here

I’ve been reading news reports that it might be possible to detect autism by watching how much a 1-year-old focuses on a speaker’s mouth. Is this true?

January 27, 2012 4 comments

This week’s “Got Questions?” answer is from Autism Speaks Chief Science Officer Geri Dawson, Ph.D.

In recent days, you may have read media stories about research showing that typically developing babies tend to switch from eye gazing to lip reading when first learning to talk, but then switch back to focusing primarily on a speaker’s eyes by 12 months. The research report appears online this week in the Proceedings of the National Academy of Sciences.

In reporting their results, developmental psychologist David Lewkowicz and doctoral student Amy Hansen-Tift, of Florida Atlantic University, suggest that this shift in focus may be different for infants who have autism spectrum disorder (ASD) or are at risk for developing it. Taking this idea a step further, they propose that paying attention to how babies shift their focus during their first year of life might help identify infants at risk for ASD – perhaps before other obvious symptoms emerge. To back their idea, they cite previous research suggesting that 2-year-olds with autism tend to look mostly at the mouths of those speaking to them, while typically developing 2-year-olds focus mostly on eyes.

It’s an intuitively appealing idea. But in truth, past studies have not consistently supported this notion that children with ASD focus less on eyes and more on mouths.

It is true that children with autism tend to pay less attention to social actions such as expressions. However, it’s possible that children with autism, like typical children, show a similar pattern of paying more attention to the mouth when they are learning language.

Given that language delays are common among children with autism, one would predict that this language-acquisition period might be prolonged. In addition one would expect that mouth-versus-eyes gaze patterns would vary among children with ASD depending on each child’s level of language skill.

Fortunately, while we don’t yet know whether eye gaze is a reliable predictor of ASD, research solidly supports the usefulness of other signs for screening toddlers. The American Academy of Pediatrics (AAP) recommends that all children receive autism screening at 18 and 24 months of age. One of the AAP’s recommended screening tools is the Modified Checklist for Toddlers, or M-CHAT, which you can access on our website, here. Please also see our Learn the Signs resource page.

Meanwhile, Autism Speaks continues to fund a wealth of research on early screening and diagnosis because evidence suggests that early intervention improves outcomes. You can explore these and other Autism Speaks studies here. This research – like all the resources Autism Speaks develops and offers – is made possible by our families and supporters. Thank you for your support.

For more research news and perspective, please visit our science page.

LIVE Chat with Geri Dawson, PhD & Lisa Goring Analyzing DSM-5

January 20, 2012 15 comments

Chief Science Officer Geri Dawson, PhD and Family Services Vice President Lisa Goring hosted a LIVE Chat to address concerns sparked by this week’s New York Times article on proposed revisions to the medical definition of autism spectrum disorder in the DSM-5, to be published in 2013. Readers heard about its potential implications for individuals to receive an autism diagnosis and appropriate services.

2:56
Hello everyone! This is Dr. Dawson. Thanks for joining us today to discuss the new DSM changes. We’ll be starting momentarily.
2:57
Hi All! Thanks so much for taking the time to be with us today. We look forward to the chat!
3:00
Comment From jennifer

Does the new DSM effect children already diagnosed…I have two with PDD-NOS….will their services change?

3:02
Hi Jennifer, This is Dr. Dawson. The new system has yet to be implemented. But once it is implemented, if your children were assessed again using the new system and, if they didn’t qualify for an ASD, theoretically yes, if could affect their eligibility for services. Autism Speaks will be monitoring this carefully. We want to make sure that no one is denied the services they need.
3:03
Comment From JenB

I read the new definition on the NY Times site. Is this the final definition or could it change? Would children who when first diagnosed met the criteria but who have been helped by intensive therapies and may not still meet them to the same degree (but still need therapy to continue to gain ground) be kicked out?

3:05
Hi Jen, This is Dr. Dawson. The APA committee that is developing the new criteria is in the process of finaling the criteria. They expect to be done in December. Then, they will conduct field trials to see how the criteria work in the real world. You ask a good question: What if a child no longer qualifies for a diagnosis because they received treatment? This will have to be decided byindividual school systems and other policy makers. We will be working hard to advocate to make sure that those children who are improving but still need services are able to retain them.
3:06
Comment From Robin

will children who are already classified be “grandfathered” per se or will we lose our classification and our services

3:07
Hi Robin, it’s Lisa – Services should be based upon the child’s needs. We will be monitoring it to make sure that individuals get the services they need.
3:09
Comment From Tavia

What does DSM stand for? Thank you.

3:09
Hi Tavia, This is Dr. Dawson. The DSM standards for the Diagnostic and Statistical Manual of Mental Disorders by the American Psychtriac Association. It is the manual that doctors use to diagnosis conditions such as autism.
3:10
Comment From Jeanie

What about children who currently have a diagnosis of PDD-NOS or Asperger’s? Will they have to be reassessed once the DSM-V rolls out, or can their current diagnoses stand?

3:11
Hi Jeanie, this is Lisa. Although it is possible that some service providers or funders could request a re-evaluation, especially if your child is seeking new services, it is our hope and understanding that the current diagnosis will stand for existing services. Presently, most social service programs require an assessment to determine eligibility.
3:12
Comment From Rebecca Pavlik

I am very scared about this new diagnostic criteria. My son is PDD-NOS I have read as many as 85% of those children will be ruled out with the new criteria. My son has a 2 year developmental delay. He is ten reads at a 1st grade level, cannot write legibly, already receives basically no services outside of SSI and Medicaid. What will happen to all of these kids?

3:12
Hi Rebecca, This is Dr. Dawson. The study discussed in the New York Times article is very preliminary and probably overestimated the number of children who would be denied a diagnosis with the new system. So, hang in there. Given that your child has a two year developmental delay, he should qualify for services regardless. In any case, we are going to monitor this carefully to make sure that kids don’t get denied services under the new system.
3:15
Comment From melissa

what can we as parents do??

3:15
Hi Melissa it’s Lisa – As parents we need to stay updated and understand the guidelines and we need to continue to advocate for the services that our children need.
3:16
Comment From Bonnie

Will it be posted somewhere so we can read all the changes that are being made?

3:17
Hi Bonnie, that’s a great question. the American Psychiatric Association (APA) has a website that details all the information and background about the proposed changes to DSM-5. Here is a link: http://www.dsm5.org/Pages/Default.aspx. Thanks, Lisa
3:18
Comment From Guest

What is most disturbing to me is that the powers that be seem to see this as a way to solve the autism epidemic. Is there a governing board higher than the APA that keeps this in check?

3:19
Dear guest (at 3:12), This is Dr. Dawson. The proposed changes in the DSM will not “solve the autism epidemic.” In fact, research has shown that the broadening of the diagnostic criteria only account for a portion of the increase in autism prevalence. Approximately 50% of the increase remains unexplained. Autism Speaks is committed to understanding why there has been a dramatic increase, focusing on possible environmental risk factors that could be contributing. We are currently funding a study to get more accurate estimates of the prevalence of autism in the US and around the world and many studies focused on environmental risk factors. It’s up to all of us to work together make sure that the changes in the DSM don’t end up discriminating against people who need services.
3:21
Comment From Mara

How will this change affect our kids as they grow, will they still be protected under American’s with Disability Act?

3:21
Hi Mara, your question about protection under the American Disabilities Act (ADA) is a great one. Fortunately, autism will continue to be protected under the ADA. The proposed changes have nothing to do with changing the disability status of autism.
3:22
Comment From Guest

I have 2 male Grand sons non verbal autistic ages 8 and 5 already getting help. Do you think they will stay on the program?

3:22
Hi Guest it’s Lisa – the services that your grandsons are receiving should continue to be based upon their needs. It will be necessary to monitor their progress to make sure that their needs are being met.
3:24
Comment From Will

Why is Autism Speaks adopting a “wait-and-see” approach with regard to the outcome of this redefinition of what falls on the spectrum, and what steps are you prepared to take to insure that this change does not marginalize those currently considered to be high-fuctioning/Aspergers/PDD-NOS?

3:25
Hi Will. This is Dr. Dawson. We really don’t know yet how the new system will influence the ability to receive a diagnosis or services. The study discussed in the New York Times today is on a very small sample with old data and only included higher functioning persons. So, they are likely greatly overestimating the impact of the new system. We are designing and funding a study that will examine the impact of the new diagnostic system on diagnosis and access to services. We are also working with policy makers and insurance companies to make sure that people are not discriminated against when the new system is implemented.
3:28
Comment From Chone

I’m trying to ask a question in the chat but it isnt posting…. So here goes…. When can we expect our children to retested? And once retested will a new IEP need to done? Should we contact our schools and teachers now to find out? Personally I would really hate to wait until the middle of the next year

3:29
Hi Chone it’s Lisa – most likely you will still follow the current IEP, until your child’s annual review. Your child’s IEP should be developed based upon his or her strengths and challenges. As a parent you can always request an IEP meeting to review the goals and services.
3:29
Comment From Maria Lopez-Torres

in an article I read in the New york times it said that they are using a 1993 study for the changing the new criteria in the DSM, do you know if that is the only study they are going by or are they using any new study’s?

3:30
Dear Maria, the 1993 study referred to in the New York Times today came from a presentation that Dr. Fred Volkmar at Yale gave to the Icelandic Medical Association this week. However, that study has not gone through the peer-review process that research studies typically receive before publication. There is another study that was published in the June 2011 edition of the Journal of the American Academy of Child & Adolescent Psychiatry (JAACAP) by Mattila et al that reached a similar conclusion although the figures were very different. That same journal has a wonderful editorial by one of the members of the DSM-5 Neurodevelopmenatl Disorders Workgroup, Dr. Francesca Happe. Thank you for your question.
3:31
Comment From Vanessa in NC

What is behind the push to change the way ASDs are classified? I just don’t understand the rationale. Why lump everyone together? Our son’s needs, as someone with Asperger’s, are largely different than some of his peers at school who have a “classic” autism diagnosis and have more acute cognitive deficits.

3:33
Hi Vanessa, This is Dr. Dawson. The scientific rationale behind the changes actually are quite solid. The different distinctions among the subtypes (Autism, PDD-NOS, Asperger Syndrome, and so on) don’t map onto different causes or different treatment approaches. For example, a very similar treatment approach would likely be used for your son, who has Asperger syndrome, as would be used for a child with high functioning autism. The only distinction between Asperger syndrome and High Functioning Autism in the current system has to do with how much speech the child had by 3 years of age. It has been difficult for even expert clinicians to make reliable distinctions among the subtypes because these distinctions rely on people’s recollection of very early history. So, it does make sense to use a broad category – ASD. In addition, for each person, the doctor will need to describe the severity of symptoms, presence and degree of intellectual and language disability, and other factors, such as presence of medical conditions (e.g. GI distress) and genetic etiology (e.g. fragile X). While the new changes make sense scientifically, we need to keep in mind that this is not simply an academic exercise. We need to make sure that these changes don’t lead to people being denied the services they deserve.
3:34
Comment From Jason

Hello. My question is whether there are plans to look into the proposed changes to the diagnostic criteria with a more representative sample of children with ASD/Aspergers/PDD-NOS before the changes actually take place?

3:34
Hello Jason, your question about whether there will be any testing or validation of the proposed changes before they are implemented is a great one. The answer is yes, there will be a number of “field testing” studies conducted between now and the final publication date, which is expected to occur in May 2013. Thanks for participating in our chat today. Lisa
3:36
Comment From Guest

This change will effect only new diagnosis right? I mean you can’t take away a diagnosis? Can you?

3:36
Hello Guest (at 3:26). This is Dr. Dawson. The concern here is if a child (or adult) needs to be re-evaluated, they would be evaluated under the new system. We will be working hard to make sure that this won’t result in denial of services if the child no longer meets criteria for an ASD. This may need to be an advocacy effort state-by-state and we are commited to doing that, if necessary.
3:42
Comment From Tricia

It seems this is going to make it very difficult for families. My son has many of the service and he has come so far with them, but only with them. He has disabilities across the board, at least some in every area. Seems like kids like him who are improving are going to be left out in the cold if families are middle or low income.

3:42
Hi Tricia, This is Dr. Dawson. We don’t know yet what impact the new system will have. The study that was discussed in the New York Times article today likely overestimated the impact. If the new system does end up excluding some people from a diagnosis of ASD, it will likely be those with higher cognitive cabilities. If your child has disabiltiies across the board, he should qualify for services, even under the new system. That said, I agree that we don’t want to make obtaining services any more difficult for families. Families are struggling to get services as it is. Autism Speaks is commited to ensuring that the new diagnostic system doesn’t discriminate against people, especially those with low incomes or those with higher cognitive abilities.
3:43
Comment From Sue

I’d like to see some discussion about how these changes may impact adults with ASD. Please discuss how many adults with AS or HFA need significant supports to transition to independence and to maintain independence. Also,they may have high comorbidity of mood and anxiety disorders. These changes may take us backwards in our understanding of complexities of ASDs and quality of life in adulthood.

3:43
Sue, we share your concerns about how the changes may impact adults with ASD, especially those who fit into the more abled end of the spectrum. Your question about how many of these adults require supports for transition to independence is a good one. Unfortunately, this type of epidemiological research has not been conducted to date so we don’t have a good idea of what % of individuals meet this criteria. Quality of life during adulthood is a significant concern for us and one of the reasons we helped to develop Advancing Future for Adults with Autism, a consortium of organizations working to redefine the future for adults. Please link here for more info on AFAA. (www.afaa-us.org)
3:44
Comment From Peter Faustino

Hi Lisa and Geri – Thank you for doing this live chat. It’s clear that there is so much misinformation that it scares many people into worrying if programs and services will change. I wish the APA were doing more to educate the public about these changes. While I agree with everything you have said, do you think that pediatricians (often the first line of defense) will be hesitant to diagnosis autism and therefore slow early intervention? Right now the dx of PDD-NOS is used for young children showing signs of autism. With Early Intervention they are making tremendous progress. What can be done to share these unintended effects with APA?

3:44
Hi Peter it’s Lisa – this is a great question. We know how beneficial early intervention can be and we must continue to build awareness around the signs of autism so that children who qualify can get services as soon as possible. We must also continue to educate pediatricians as well as families about the signs of autism and the importance of early diagnosis. Thanks for joining us!
3:48
Hello Guest at 3:37, insurance coverage is an important issue to Autism Speaks and we don’t expect the DSM 5 changes to have a significant impact. All of the 29 state laws that require health plans to cover autism treatments have language in the definitions that apply to latest definition of autism spectrum disorders. So these laws will not be impacted by these changes. However, if a person does not meet the criteria for ASD under the new DSM, a doctor may choose or have to use another diagnostic code. Thanks for this question. Lisa G
3:48
oops. Here comes the question…
3:48
Comment From Guest

For some reason, these are not posting ot chat, so I will try one more time. Any ideas regarding the affect of these changes on insurance coverage for OT, PT, ST? I know that there have been great gains recently, with new laws put into use. I am a bit nervous that the new changes might affect our recent progress.

3:49
Hi everyone,
Your questions don’t automatically post because–fortunately–there are hundreds of you joining us.
3:49
We’re answering as fast as we can!
3:52
Comment From Michelle

How will this affect kids in the public schools seeking IEP services? I know in some cases, services are denied if they do not fit in the child’s specific diagnoses.

3:53
Michelle, your question about IEP services in public schools is a great one. Generally speaking, a diagnosis of autism is sufficient to permit a student to receive special educations services with an IEP under IDEA and we do not expect that to change under the new DSM-5 criteria. However, for those who no longer meet the new criteria it may become more challenging to qualify for an IEP. Of course, environmental accommodations are available through 504(b) if the student needs it. But make no mistake, we are very concerned that some students with autism may find it more difficult to get the support they need. Autism Speaks plans to closely monitor this situation and advocate where needed.
3:54
Comment From lisa

what is g.i. distress?

3:55
Hi LIsa, This is Dr. Dawson. Many persons with autism have associated medical conditions, such as sleep problems, gastrointestinal problems (GI distress), and seizures. Under the new system, the doctor will be asked to note whether or not the person has these conditions because they can greatly interfere with a person’s ability to take advantage of behavioral and educational treatments.
3:57
Comment From Dianna

One of my granddaughters is now a highly functioning autistic but that’s only because of my daughter and son-in-laws’ efforts and home-schooling. She will never be able to support herself or live alone despite all her advancements. I see a similar question was proposed earlier but if she is denied her medication she will definitely regress. It seems like it’s just another burden to put on our autistic population. She’s better, so she may not qualify when she’s reevaluated, so no meds, so she regresses, then reevaluated, back on meds, gets better, then fails revaluation, etc. Is this something you, Autism Speaks, will be trying to prevent? This cycle of passing evaluation / failing evaluation?

3:57
Hi Dianna, it sounds as if your daughter and son-in-law have done a great job advocating for your granddaughter. We will need to carefully monitor the effects of any possible changes in service. It will be important to keep data as to any changes in skills as a result of a change in service. We are working hard at Autism Speaks to provide tools and resources to improve the lives of all that are living with autism, including a grandparent’s support kit as well as a transition tool kit. Please visit the Autism Speaks website www.autismspeaks.org Thanks, Lisa
3:58
Comment From Jeff

Previous reports had mentioned that Asperger’s syndrome might be eliminated as a diagnosis entirely in the DSM V. Is this change part of what we’re discussing today?

3:59
Hi Jeff, This is Dr. Dawson. In the new diagnostic system, the subcategories of autism, PDD-NOS, Asperger syndrome, and so on, would be eliminated and all of these subtypes would fall under one umbrella term – Autism Spectrum Disorder. However, people may still want to refer to themselves as having Asperger syndrome, even though the diagnosis won’t be recognized formally by the medical community.
4:00
Comment From Beth

I would like to advocate in my state. How would I go about it? I am finishing my bachelors in Human Services and there is a great need for support here where I live

4:01
Dear Beth, we would love to have your help advocating in your state! Please visit www.autismvotes.org or contact our Government Relations department atadvocacy@autismspeaks.org. Thank you for your offer. We’ll let our AutismVotes people know! Lisa
4:03
Comment From JD

I am an adult with Asperger’s. Although I am high-functioning and have a masters degree, I am unable to maintain work. I have had over 30 jobs, so I live on SSDI. It is unlikely that I would be diagnosed with the Autism Spectrum Disorder in DSM-V. So would I lose my Social Security Disability Insurance?

4:04
Hi JD, This is Dr. Dawson. I am sorry to hear that it’s been so hard for you to maintain work. It is unclear whether the changes in the DSM would mean that you would no longer receive a diagnosis of ASD. However, it is clear that your disability is interfering with your ability to function and you could benefit from receiving support and services, such as job coaching. We want to make sure that people like you, who are struggling with symptoms of autism, still receive the support and services you need under the new system. We will work hard on your behalf. Please join us in our advocacy efforts.
4:06
Comment From Kathy

We’re a military family and I worry about how this might affect our son every time we move. Schools want to do their own testing and have documentation. How will this affect him and hopefuly protect him from being stripped of services?

4:07
Hi Kathy, as a military family please be sure to visit our support page for Military Families and Autism Advocacy athttp://www.autismvotes.org/site/c.frKNI3PCImE/b.5141983/k.A9E4/Military_homepage.htm. As you obviously know, military families move frequently and need to change schools. That said, your son’s diagnosis shouldn’t change just because you move. In fact, that might violate federal education law so you should talk with a special education advocate or lawyer to make sure. Please visit our Family Services Resource Guide if you need a referral in your local area. Also, we have a Congressional Briefing on the military and autism on Jan 31st in Washington DC. Please visit www.autismvotes.org for more information.
4:08
Dear Everyone, I am so sorry we are unable to answer all of your questions. Please keep in touch through our Facebook page and follow the Autism Speaks Official Blog site. We will be monitoring and writing about the DSM as this unfolds. Thanks again for joining us. Dr. Dawson
4:09
Thanks so much for joining us!! Lisa

The Changing Definition of Autism: Critical Issues Ahead

January 20, 2012 76 comments

Posted by Autism Speaks Chief Science Officer Geri Dawson, PhD.

Many in our community are understandably concerned that a planned revision of the medical definition of autism spectrum disorder (ASD) by the American Psychiatric Association (APA) will restrict its diagnosis in ways that will prevent many persons from receiving vital medical and social services.

Before I catch you up on some of the details behind this revision, let me first say that although the proposed changes have a solid scientific rationale, we at Autism Speaks are likewise concerned about their effect on access to services. It is crucial that these changes don’t result in discrimination against people who are struggling with autism symptoms.  As the APA moves forward in formalizing the new definition, we urge that this issue be kept at the forefront of the discussion. As the changes are implemented, scientists, families and providers will all need to carefully monitor its impact on those affected by all forms of ASD. The bottom line is this: We must ensure that all those who struggle with autism symptoms get the services they need.

Now let me provide some background.

The APA is currently completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-5), which will be published in 2013. The DSM is the standard reference that healthcare providers use to diagnose mental and behavioral conditions. As such, it influences availability of treatments as well as insurance coverage.

An expert panel appointed by the APA has proposed that the new version of the DSM change the current definition of ASD, in part because of shortcomings in how it is currently used for diagnosis. The new definition would do three things. First, it would eliminate the previously separate categories of Asperger syndrome and pervasive developmental disorder, not otherwise specified (PDD-NOS) from the diagnostic manual. Second, it would fold these disorders, together with “classic” autism, into the single category of ASD. Finally, it would change the criteria for diagnosing ASD.

Under the current definition, a person can qualify for an ASD diagnosis by exhibiting at least 6 of 12 behaviors that include deficits in social interaction, communication or repetitive behaviors. Under the proposed definition, the person would have to exhibit three deficits in social interaction and communication and at least two repetitive behaviors. The APA has also proposed that a new category be added to the DSM – Social Communication Disorder. This would allow for a diagnosis of disability in social communication without the presence of repetitive behavior.

Based on a recent study, some experts are suggesting that many individuals who currently meet the criteria for ASD, especially those who are more cognitively capable, would no longer meet criteria for ASD. If so, the new criteria would result in discrimination against people who are more cognitively capable.  We are concerned about this and will do all we can to ensure that all people who are struggling with autism symptoms retain the services they deserve.

As these new criteria are rolled out over the coming year, Autism Speaks’ position is that it will be vitally important to collect meaningful information on how the change impacts access to services by those affected by autism symptoms. Further policy changes may be needed to ensure that all persons who struggle with autism symptoms get the services they need.

It is important to keep in mind that this revision in the medical definition of ASD is not just an academic exercise. These changes in diagnostic criteria will likely have important influences on the lives of those in our community who critically need services.

[Editor's note: Please see the Autism Speaks policy statement on the DSM-5 revisions and a related FAQ here.]

Tune-in today to hear Autism Speaks’ leadership discuss the recently released analysis of the DSM-5, to be published in 2013, and hear about its potential implications for individuals to receive an autism diagnosis and appropriate services.

  • Then, please join us for a live web chat at 3 pm Eastern with Autism Speaks Chief Science Officer Dr. Geraldine Dawson and Vice President of Family Services Lisa Goring – click on the tab on the Autism Speaks Facebook page to join in!
You can read the full Chat Transcript here.

Watch Autism Speaks’ Dr. Andy Shih discuss the story on MSNBC “News Nation with Tamron Hall”

Tune in TODAY for Autism Speaks’ Analysis of the DSM-5

January 20, 2012 19 comments

Tune-in today to hear Autism Speaks’ leadership discuss the recently released analysis of the DSM-5, to be published in 2013, and hear about its potential implications for individuals to receive an autism diagnosis and appropriate services.

Read Geri Dawson’s blog post about the DSM-5, The Changing Definition of Autism: Critical Issues Ahead.

Watch Autism Speaks’ Dr. Andy Shih discuss the story on MSNBC “News Nation with Tamron Hall”

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