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Adults with Autism: Sharing Ideas, Filling the Gaps

January 30, 2012 30 comments

Guest post by Merope Pavlides, editor of AutismAfter16.com, author of Animal-assisted Interventions for Individuals with Autism and mom to two sons, one of whom is on the autism spectrum.

Autism is not a condition of childhood. Autism follows the person. It follows the person into the workplace, the community, adult relationships and health care. Until recently, however, little attention has been paid to issues surrounding adulthood with autism. Fortunately, we have now begun a national dialogue, and Autism Speaks is bringing its voice—and resources—to the discussion in a big way.

On January 26th, Autism Speaks held a research summit entitled, “Adults with Autism: Sharing Ideas, Filling the Gaps,” in Chapel Hill, NC. The event was co-hosted by Extraordinary Ventures, a model employer of adults with autism. Extraordinary Ventures was founded by Autism Speaks supporters and parents Lori and Gregg Ireland.

The meeting brought together many premier scholars on adult autism issues, as well as Autism Speaks representatives, autism service providers, parents and donors. My husband, Peter Emch, and I were invited to participate as parents and long-time supporters of Autism Speaks. The very fact that Autism Speaks included parents in an event like this is hugely meaningful, because it grounds the research agenda in real-world experience and need.

Moderated by Autism Speaks Chief Science Officer, Geri Dawson, Ph.D., the meeting provided the opportunity for investigators to present overviews of current research projects funded by Autism Speaks and for all participants to ask questions and share ideas. The morning session showcased studies aimed at describing autism spectrum disorder (ASD) in adults, while we spent the afternoon with prescriptive research involving topics such as how to improve interventions.

Morning keynote speaker Marsha Mailick Seltzer, Ph.D., of the University of Wisconsin’s Waisman Center, outlined “Trajectories of Development in Adolescents and Adults with ASD.” Afternoon headliner Paul Shattuck, Ph.D., of Washington University, discussed “Service Use and Outcomes among Youth with ASD.” I found it interesting that both Seltzer and Shattuck noted that, despite few published studies on adults with autism, there is an abundance of data awaiting analysis. This means that we need to be investing resources in finding the meaning in the information that’s already available.

As a parent of a young adult with autism, it’s gratifying to sit in a room with so many smart, energetic people and learn that they want to bring their talent and enthusiasm to bear on the same issues that worry me as a parent. I’m also a special educator. As such, I’m so glad to see researchers demonstrating concern for how academic findings translate into real-life practice. While it’s crucial that we continue to deepen our understanding of what life is like for adults with autism, it’s just as important to make immediate progress in improving their lives.

I was especially excited to hear so much conversation on the topic of our adults as learners. As a society, we tend to think about the autism service system for adults as involved exclusively in care giving. Rather we need to develop dynamic supports that provide ongoing opportunities for personal growth and development. The summit allowed those who are studying adult needs to connect with those who are examining skill-building models. It’s this type of collaboration that fosters new programs that not only look good on paper, but also work in the real world.

Finally, participating in an event like this reminds me of how important it is for families to understand that they are integral to the research process. Sometimes we feel as though investigators go about their work in ivory towers without understanding the real needs of those on the ground. As families, we must be active participants in the research process. Not only in the sense of filling out questionnaires and providing information, but in terms of actively making use of the knowledge emerging from this research. That doesn’t mean we need to bury our noses in scholarly journals. It does mean that we need to enter into thoughtful discussion with scientists about how to incorporate what they are learning into what we need from adult service providers. Good scholarship is being conducted through Autism Speaks funding. As a community, let’s not allow it to happen in a vacuum.

[Editor’s note: Thanks to our grant search engine, you can explore Autism Speaks-funded research concerning adolescents, adults and related services 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.

Social Lives and Teens with Autism

January 24, 2012 27 comments

This is a blog post by Lisa Goring, Autism Speaks Vice President, Family Services.

A recent research study funded by Autism Speaks reached a conclusion that probably would surprise few in our community: Teens with an autism spectrum disorder (ASD) often face major obstacles to social life outside the classroom. Given that one of the hallmark features of autism is impaired social interaction, it’s not hard to imagine why teens on the spectrum typically have difficulty making friends and participating in social activities, especially outside of school.

Unfortunately, social challenges are often considered the norm for kids growing up with autism. But this needs to change. The good news is that change is underway. Innovative approaches – ranging from group golf lessons to Girls Night Out – have been launched across the United States with the support of Family Services Community Grants from Autism Speaks. Their goal is to improve the socialization skills of teens and young adults with autism.

The research study was originally funded by Autism Speaks as a Pilot Grant in 2010 and then published in the November 2011 issue of PLoS One by a team led by Paul T. Shattuck, Ph.D., of Washington University, in St. Louis. The study analyzed data collected from a large number of adolescent students with autism enrolled in special education.

When compared to students with other special education needs, such as learning disabilities, mental retardation* and speech-language impairment, teens on the spectrum are significantly less likely to see friends out of school (43.3 percent), never to get called by friends (54.4 percent) and never to be invited to social activities (50.4 percent).

Empirical data such as the information from this study helps drive awareness and decision making. Based on these results, we now know with more certainty that many adolescents with ASD struggle to fit in with their peers. Backed with facts and figures, we can advocate for additional services and supports, target our research toward social skills interventions, develop better policies, and, ultimately, create more and better services and programs.

In this case, the research reaffirms the need for initiatives such as the Family Services Community Grant program that Autism Speaks created five years ago with two goals in mind: 1) to build the field of services for individuals with autism and 2) to expand the capacity to effectively serve this growing community. In addition, a Transition Tool Kit was created and launched last year to help guide the transition from adolescence to adulthood. Both cases demonstrate how Autism Speaks is providing solutions to help families address real challenges identified or documented through research.

The Community Grants [JSS1] are designed to meet needs in education, recreation and community activities, and specifically [JSS2] young adult and adult programs. Among the elements that go into a successful proposal are innovation and the ability to be replicated elsewhere.

To date, Autism Speaks has funded 193 community grants totaling almost $4.0 million across North America. A sampling of recent grant awards demonstrates how community initiatives across the country are addressing the need for social activities targeted to teens and young adults. Here are a few examples:

  • Several suburban school districts outside of Philadelphia banded together to organize “Acting Antics,” a program using live theater as a way to teach social cognition skills. Student actors perform in short scenes with a partner, each assuming the persona of a particular character. The exercise requires each student to consider the character’s perspective, creating an opportunity to teach this skill in a fun and non-threatening manner. The Autism Speaks grant will be used to expand the program to other school districts.
  • In Kansas City, a Girls Night Out program was established through the University of Kansas to build social competence and self-care skills for teen girls on the autism spectrum. The sessions take place in community settings such as a hair salon, coffee shop and gym. The community grant from Autism Speaks will be used to provide opportunities for girls with ASD to interact with typically developing peers during age-appropriate activities while improving social competence, friendship development, social skills and improved self-care skills.
  • Golf was the theme of “Far from Par,” a summer golf program for 16 middle and high school students in Bergenfield, N.J., that set out to improve communication, social and physical skills, and help the students forge closer bonds with peers, siblings and parents. The Family Services grant enabled the program to double attendance.
  • The Outdoors for All Foundation, in Seattle, was awarded a grant to expand its outdoor recreation program for children and adults living with ASD and their friends and families. The foundation was also able to design a week-long adventure camp for teens with high functioning autism as a result of their grant.

Our research funding will continue to help us target our family service grants toward specific areas of need and also allow for the development of new and more effective autism services.  We will continue to make use of those research findings to develop and expand new programs is equally important to improve the quality of life of teens and young adults on the spectrum. Autism Speaks would like to thank its supporters for helping us fund our science and family services grant programs.

*Although current consensus in the field eschews us of the term “mental retardation” in favor of “intellectual disability”, the study authors used the mental retardation term “to be consistent with the special education legislative definitions of the various disability categories and the way the survey data were collected.”


 

Healthcare, Technology and Autism converge at CES 2012

January 24, 2012 5 comments

This is a guest blog post from Marc Sirkin, Autism Speaks VP Social Marketing and Online Fundraising. He recently attended CES to support the launch of a strategic partnership with Careverge.com.

CES (Consumer Electronics Show) is big, really big. Crazy big. The annual show hosts some 140,000 attendees and features some of the most incredible technology, gadgets and ideas that shape how we interact with our world. The main purpose of my attending was to support a recent partnership between Autism Speaks and Audax Health’s Careverge [link]. Starting back in October, when we held the first “Hacking Autism” event technology has been on my mind, and as we saw on that incredible day, mobile apps and tablets are literally transforming the autism experience across the autism spectrum. It’s led me to start asking what I think is a great question: “How will new digital technologies and digital platforms transform the lives of those on the spectrum today and in the future?”

We continue to try to answer that question at IMFAR, our Core77 competition and have some exciting news to share in the days ahead about what’s next for “Hacking Autism.” I’m thrilled here to blog about a new partner, Careverge.

Careverge as you’ll see and hear in the video below is on the forefront of the “digital health” revolution. Spurred on by massive consumer pain and ever spiraling health care costs, entrepreneurs like Grant Verstandig, the Founder and CEO of Audax Health are bringing together a combination of technological ideas and experience, social networking, data analysis and gaming to create innovative and frankly, incredibly cool solutions.

I don’t know how Careverge will help you and your family but I suspect that you’ll come up with new ways to use the service.  There are already more than 200 members of the “Autism Speaks” community and now it’s your turn.  If you believe like I do that technology can and is making a different TODAY for all those on the autism spectrum, please register on the Autism Speaks Careverge site and and send us your feedback!

Autism and Associated Medical Conditions

January 24, 2012 18 comments

Guest post by epidemiologist Laura Schieve, Ph.D., of the National Center on Birth Defects and Developmental Disabilities, at the Centers for Disease Control and Prevention.

In recent years, several reports have suggested that children with autism or other learning or behavioral developmental disabilities are more likely than typically developing children to have health conditions such as respiratory or gastrointestinal illnesses.

However the studies behind these reports were often small and showed inconsistent findings. Some of their methods had limitations. One of the biggest problems was that they didn’t adequately compare children with different types of developmental disabilities. Because of these limitations, many public health professionals and healthcare providers have been skeptical about whether children with autism or other behavioral developmental disabilities truly faced an elevated risk of other medical problems.

My colleagues and I wanted to help paint a clearer picture of this important public health issue. Our study, recently published in the journal Research in Developmental Disabilities, compared the medical conditions and healthcare needs of children with developmental disabilities with those of children without developmental disabilities. We also compared children with autism with those who had other developmental disabilities.

We assessed children included in the National Health Interview Surveys from 2006 to 2010. Households throughout the United States are randomly selected to participate in this annual survey. In households with children, one child is randomly selected to participate. Each child’s parent or other primary caregiver is interviewed in-person about the child’s health and development. Interviewers asked whether a doctor or other healthcare provider has ever told them the child has certain conditions including autism and several other developmental disabilities. We also ask if the child has a health condition such as asthma or has experienced other symptoms such as frequent diarrhea or colitis in the past year.

We included more than 41,000 children aged 3 to 17 years in the study. Of these, 5,469 had one or more of the following five developmental disabilities:  autism, intellectual disability, attention deficit and hyperactivity disorder (ADHD), learning disability or other developmental delay.

As a group, these children had higher than expected rates of all of the medical conditions we studied. More specifically, they were:

* 1.8 times more likely than children without developmental disabilities to have ever had an asthma diagnosis,

* 1.6 times more likely to have had eczema or a skin allergy during the past year,

* 1.8 times more likely to have had a food allergy during the past year,

* 2.1 times more likely to have had three or more ear infections during the past year,

* 2.2 times more likely to have had frequent severe headaches or migraines during the past year, and

* 3.5 times more likely to have had frequent diarrhea or colitis during the past year.

These increased rates of health conditions held true even for children diagnosed with ADHD or learning disability, but not diagnosed with autism or intellectual disability.

However, one finding stood out in particular when we compared the developmental disability groups to each other: Children with autism were twice as likely as children with ADHD, learning disability or other developmental delay to have had frequent diarrhea or colitis during the past year. They were seven times more likely to have experienced these gastrointestinal problems than were children without any developmental disability.

This detailed assessment demonstrates that children with autism or many other types of developmental disabilities do, in fact, face an increased risk for many common health conditions. This, in turn, provides evidence that children with developmental disabilities require increased health services and specialist services, both for their core functional deficits and for health problems beyond their core developmental disabilities.

Reference: Schieve LA, Gonzales V, Boulet SL, Visser SN, Rice CE, Van Naarden-Braun K, Boyle CA. Concurrent medical conditions and health care use and needs among children with learning and behavioral developmental disabilities, National Health Interview Survey, 2006-2010.  Res Dev Disabil. 2011;33:467-76.

Read more autism research news and perspective on the science page. Explore the studies Autism Speaks is funding with our Grant Search. And thanks for making this research possible! 

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”

What is epigenetics, and what does it have to do with autism?

January 20, 2012 11 comments

This week’sGot Questions?” answer comes from Alycia Halladay, PhD, Autism Speaks director of research for environmental sciences

If you’ve been following autism research in recent years, you have probably read—many times—that familial, or inherited, risk is seldom the whole picture. A few inherited genes are sufficient by themselves to cause autism. But most so-called “autism genes” only increase the risk that an infant will go on to develop this developmental disorder. As is the case in many complex diseases, it appears that autism often results from a combination of genetic susceptibility and environmental triggers.

This is where epigenetics comes in. Epigenetics is the study of the factors that control gene expression, and this control is mediated by chemicals that surround a gene’s DNA. Environmental epigenetics looks at how outside influences modify these epigenetic chemicals, or “markers,” and so affect genetic activity.

It is important to remember that scientists use the term “environment” to refer to much more than pollutants and other chemical exposures. Researchers use this term to refer to pretty much any influence beyond genetic mutation. Parental age at time of conception, for example, is an environmental influence associated with increased risk of autism, as are birth complications that involve oxygen deprivation to an infant’s brain.

Because epigenetics gives us a way to look at the interaction between genes and environment, it holds great potential for identifying ways to prevent or reduce the risk of autism. It may also help us develop medicines and other interventions that can target disabling symptoms. We have written about epigenetics previously on this blog (here and here). So in this answer, I’d like to focus on the progress reported at a recent meeting hosted by Autism Speaks.

The Environmental Epigenetics of Autism Spectrum Disorders symposium, held in Washington, D.C. on Dec. 8, was the first of its kind. The meeting brought together more than 30 leaders in autism neurobiology, genetics and epidemiology with investigators in the epigenetics of other complex disorders to promote cross-disciplinary collaborations and identify opportunities for future studies.

Rob Waterland, of Baylor College of Medicine in Texas, described epidemiological studies and animal research that suggested how maternal nutrition during pregnancy can affect epigenetic markers in the brain cells of offspring.

Julie Herbstman, of Columbia University, described research that associated epigenetic changes in umbilical cord blood with a mother’s exposure to air pollutants known as polycyclic aromatic hydrocarbons (PAHs). PAHs are already infamous for their association with cancer and heart disease.

Rosanna Weksberg, of the Hospital for Sick Kids in Toronto, discussed findings that suggest how assisted reproductive technology may lead to changes in epigenetically regulated gene expression. This was of particular interest because assisted reproduction has been associated with ASD. Taking this one step further, Michael Skinner, of Washington State University, discussed “transgenerational epigenetic disease” and described research suggesting that exposures during pregnancy produce epigenetic changes that are then inherited through subsequent generations.

Arthur Beaudet, of Baylor College of Medicine, discussed a gene mutation that controls availability of the amino acid carnitine. This genetic mutation has been found to be more prevalent among children with ASD than among non-affected children, suggesting that it might be related to some subtypes of autism. Further study is needed to follow up on the suggestion that dietary supplementation of carnitine might help individuals with ASD who have this mutation. Caution is needed, however. As Laura Schaevitz, of Tufts University in Massachusetts, pointed out, studies with animal models of autism suggest that dietary supplementation may produce only temporary improvements in symptoms of neurodevelopmental disorders.

So what does this all mean for research that aims to help those currently struggling with autism? The meeting participants agreed that the role of epigenetics in ASD holds great promise but remains understudied and insufficiently understood. For clearer answers, they called for more research examining epigenetic changes in brain tissues. This type of research depends on bequeathed postmortem brain tissue, and Autism Speaks Autism Tissue Program is one of the field’s most important repositories. (Find more information on becoming an ATP family here).

The field also needs large epidemiological studies looking at epigenetic markers in blood samples taken over the course of a lifetime. One such study is the Early Autism Risk Longitudinal Investigation (EARLI). More information on participating in EARLI can be found here.

Autism Speaks remains committed to supporting and guiding environmental epigenetics as a highly important area of research.  We look forward to reporting further results in the coming year and years.

Got more questions? Send them to gotquestions@autismspeaks.org.

Read more autism research news and perspective on the science page.


International Conference on Autism in Ireland

January 18, 2012 4 comments

University President James Browne welcomes attendees.

Posted by Simon Wallace, Autism Speaks director of scientific development for Europe

A fine mist was rolling in off the Atlantic as we made our way to the opening session of last week’s International Conference on Autism at the National University of Ireland, in Galway. Autism Speaks partnered with the university and the American Ireland Fund to put together a program that attracted not only researchers and clinicians, but also parents and policy makers. In all, more than 600 delegates attended this productive conference in the beautiful town of Galway, on Ireland’s west coast. The meeting was very much the brainchild of Autism Speaks board member Adrian Jones, a native of Ireland who now works for Goldman Sachs, in New York City. (You can view the full program here.)

Parents and educators joined researchers and physicians.

We received a warm welcome from National University of Ireland President James Browne before spending two days hearing from international experts on advances in clinical practice, early intervention therapies and educational supports. As hoped, the presentations spanned the range of evidence-based practices in the United States and Europe. This included important information coming out of our own Autism Treatment Network (ATN) and other Autism Speaks programs and initiatives.

The morning presenters included Helen McConachie, of Newcastle University, who spoke about early intervention. Gillian Baird, a pediatrician from Guy’s Hospital in London, spoke as the chair of a committee that developed the United Kingdom’s clinical guidelines on referral and diagnosis of children and teenagers with autism. Also presenting was Cathy Lord, of Columbia University. Lord has been centrally involved in the upcoming revision of the Diagnostic and Statistical Manual (DSM), which physicians use to diagnose autism and related disorders. She explained that there would no longer be three separate diagnoses of autism, Asperger syndrome and pervasive developmental disorder-not otherwise specified (PDD-NOS). In the future, these will all be included under the unifying diagnosis of autism spectrum disorder (ASD). This is to avoid the persistent inconsistencies in how physicians assign children to one of the three subtypes.

Afternoon workshops included a presentation by our own Vice President for Translational Medicine Rob Ring, who spoke about the latest evidence for clinical use of medications for patients with autism. ATN Program Director Nancy Jones presented on the network’s ongoing work developing best practices and clinical guidelines.

Connie Kasari, of the University of California-Los Angeles, presented the second day’s keynote address, which focused on the large numbers of children with autism who receive services in schools—and the need for more research on the effectiveness of these services. Among the interesting research findings that Kasari described was the insight that young children with autism are more “socially connected” than we previously assumed. Around 20 percent, she explained, enjoy close friendships. Intriguingly, Kasari has observed that this social connectedness drops when schoolchildren with autism go out for recess.

Minister Reilly speaks with reporters.

For me, the highlight of the second day was a presentation by Jamie Reilly, who spoke of the challenges growing up with autism and how he went on to graduate from Ireland’s top-rated university and is now studying for a master’s degree in Belfast. Reilly spoke of the importance of his family—in particular how his “mum” taught him strategies for overcoming many of the difficulties he encountered. He also described how he occasionally continued to make mistakes—for example, saying “good riddance” rather than “goodbye” to one of his teachers at the end of a lesson. With his fantastic sense of humor, Reilly kept us laughing throughout his presentation.

We also heard from Jamie Reilly’s father—James Reilly, a physician and Ireland’s current minister of health. Minister Reilly’s emotional presentation spoke of his pride in his son’s achievements and respect for his wife’s determined efforts to ensure that Jamie had the opportunities he needed. The minister spoke of the need to provide the best evidence-based approaches to help children with autism reach their full potential. He also announced his ministry’s commitment to provide an additional $4 million over the next three years to improve diagnostic and early intervention services. Minister Reilly will also be creating a senior post to coordinate autism-related activities across Ireland’s departments of health and education.

As we wrapped up this fantastic conference, many delegates told us that this was the largest conference ever held at the university and one that stood out in the sheer number of stakeholders from the autism community. We left for our homes and workplaces with the feeling that we are on the “front foot” for the New Year, thanks to what we learned about the latest research and guidelines on evidence-based practices.

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