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Posts Tagged ‘IAN’

Family Services Office Hours – 11.30.11

December 1, 2011 2 comments
3:02
Hello everyone and welcome to this week’s Office Hours!
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The Autism Response Team is here and ready to answer your questions and provide you with some great resources!
3:08
Submit A Service
Do you have a service you’d like to add to the Autism Speaks Resource Guide? Click here to complete the submission form!
http://www.autismspeaks.org/family-services/resource-guide
3:09
Comment From Bridget

My granddaughter who I raise has P.D.D. N.O S. she screams alot and has started to throw things and kick. Her schedual has be out of wack this week is a strong schedual important for her behavior problems?

3:11
Hello Bridget
YES!! Many children with autism depend on a routine schedule that is predictable. but its also important to mix and vary activities in order for the person to get used to variety of activities.
3:12
Also Bridget – we have recently published a grandparent tool kit
3:12
Comment From Heidi

Hello, my son is high functioning ASD and wiil be getting an iPad soon. I have been looking at various blogs, articles and sites for apps that he can use but was wondering if you have any recommendations? Looking mostly for eye contact, social, and speech. Thanks!

3:12
Hi Heidi! We have a great list of Apps for Autism in our Resource Library. These are apps that have been submitted to us by families or professionals who have found them very helpful! In addition, at the bottom of the page, there are links to many other lists of app recommendations from other autism organizations.http://www.autismspeaks.org/family-services/resource-library/autism-apps
3:13
Comment From amber

my son is 13 and high functioning but still cannot tie his shoes or place on right feet

3:17
Hi Amber – Your son is right at the start of the Transition age- and you are absolutely right to make sure he can complete his self care and dressing himself independently. I would suggest making “shoe tying” a objective in your son’s IEP. There are many different instructional methods to teach these self care skills, it will be important to determine the best one to teach your son.
3:17
Amber- In addition we have have recently published a Transition Tool kit.
3:18
Comment From Bobbie

I am not a parent but I am a psychology major. I am planning to complete my ABA certification in the next two years. I am currently working with Autistic children and their families through local groups and organizations. Are there any “good” or “proven” resource sites/books that you recommend that I use in order to gain information and useful methods for working with these individuals.

3:18
Hi Bobbie. That is great to hear you are working with children with autism. We need more people like you! We do not endorse any very specific resources, however we have lists of books and tools for professionals on our website that people have submitted to us because they have found them helpful in working with children with autism. You can check out these books/tools at the 2 links below: http://www.autismspeaks.org/family-services/resource-library/books#professionalshttp://www.autismspeaks.org/family-services/resource-library/tools-professionals
3:18
Comment From Jennifer S

First off. Thank you for taking the time to help!! Heres my question. My 4 year old son has autism. We are having a really hard time potty training. He will use the potty but ONLY IF he has on NO clothes at all. If he has any article of clothing on he will use the bathroom on himself. We tried going potty every 15 mins, but that still doesn’t help. My husband and I are just out of ideas and really don’t know where to turn to for help..

3:23
Hi Jennifer- Hang in there, all your time and effort will be worthwhile when your child is successfully potty trained! I would suggest you consult with your Pediatrician and your son’s school based team. This is a skill where you need to work with the classroom teacher, to make sure you are both on the same page.
Also, the Autism Treatment Network (ATN) will be publishing a Tool Kit in early 2012 on Potty Training for Individuals with Autism. Check back on their webpage early 2012.
http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use
3:23
We do not endorse any specific materials, but here are 2 books that have been submitted to our Resource Library from families who have found them to be helpful with toilet training: http://www.amazon.com/teach-toileting-revolutionary-approach-disorders/dp/0615255523http://www.amazon.com/gp/product/1932565493/ref=as_li_ss_tl?ie=UTF8&tag=autispea-20&linkCode=as2&camp=217145&creative=399369&creativeASIN=1932565493
3:24
Comment From Susan

My daughter takes Vyvanse and Celexa for the past year. I do think they help her but how long is it safe or recommended to remain medicated?

3:24
Hi Susan. Every child is different and every child responds differently to different medications. Our Autism Treatment Network team just released a Medication Decision Aid Tool Kit called Autism – Should My Child Be Taking Medication for Challenging Behavior?. We have gotten great feedback from this resource, as many of families in the Autism Speaks community have found it to be very helpful!
3:25
Comment From Mary

I have a 12 yo aspergers boy. Yesterday was written up for saying a curse at 13 yo girls who were bothering him – the problem is his perception of the situation – he felt attacked. He wasn’t really wrong (per his teacher) but I do need to disapline for the language. I am running out of disaplinary actions (have restricted everything – nothing makes an impact). What can be utilized to get the message across, and help him to have a better perception of situations?

3:27
Hi Mary- As you know, there is no easy answer to your question. Does your son have support in developing appropriate social skills? I would ask to include a social skill goal in his IEP so that it can be addressed and his progress documented.
3:28
In addition, I would suggest 2 tool kits we have: our Asperger Syndrome/High-Functioning Tool Kithttp://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:28
and our Transition Tool Kit for children with autism transitioning to adulthood: http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit
3:30
Comment From Cassie

My son is 19, HF, and rather obsessed with our football team’s win-loss record. we’ve had 0-11, 0-10. gets mighty upset about it. Is there anything I can do besides redirect? Concerned because next year he’ll be living away from home, need to help him do it himself.

3:33
HI Cassie – Does your son have a counselor or a support person he can discuss these kinds of issues on an ongoing basis. It might be a good idea if he is planning a transition to have someone to talk with about his these upcoming changes.
3:33
Here is a link to our Transition Tool Kit. You can order a copy free of charge on our website: http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit
3:34
Comment From Guest

Hi. Do you have any guidance addressing problem behaviors (ex. hitting, punching, pinching, screaming) in preschool/early school years?

3:37
Hi- I would request an IEP, and ask his Team to address these problem behaviors. It very important to understand the functions of the behaviors and have a detailed plan in place that everyone on the team is in agreement with. Its also important to track the data to make sure the plan is working.
3:37
Here is a link to information about Applied Behavior Analysis from our website: http://www.autismspeaks.org/what-autism/treatment/applied-behavior-analysis-aba There is also a list of other treatments on the left side panel as well.
3:38
If you are looking for resources in your area, we have a list of ABA and other service providers, as well as social skills groups and afterschool programs, in our Resource Guide:www.autismspeaks.org/resource-guide
3:39
We also have a list of books related to teaching increasing social skills and decreasing challenging behavior on the Books page of our Resource Library: http://www.autismspeaks.org/family-services/resource-library/books#socia
3:40
We hope these resources are helpful to you!
3:40
Comment From Guest

my daughter is 7 and has PDD-NOS and tends to repeat phrases a lot. Is there anything that we can do to stop this?

3:42
Hello Guest- I would recommend you request a Speech and Language evaluation, in order to gain a full understanding of your daughter’s echolalia, and a plan to implement. You can locate a Speech and Language professional in our online Resource Guide.
http://www.autismspeaks.org/family-services/resource-guide
3:43
You may also want to include speech therapy in your daughter’s IEP. You can read more about IEP’s and how to get what you and your child need most with them athttp://www.autismspeaks.org/family-services/community-connections/back-to-school
3:44
Comment From debbie

how do I tell if my 15 year old who is failing school by not doing homework and studying is really struggling or is being lazy? I have done everything I can think I can to monitor his grades and homework and he always says he is done.

3:49
HI Debbie- Its sounds like you’ve been working very hard to help your son. I would suggest you get some support by calling an IEP or working together with this teachers. Its important that counselors, teachers, etc., be part of the plan One suggestions might be that he complete his homework at school after school hours. I am including a link to the transition Guide, as a parent you can get a free copy mailed to you.
3:51
Comment From Guest

Hello everyone, my son is 10yrs. HFA . I have not have the talk with him yet of him having autism…how should I start what should i do,,I am afraid of what reaction he might have.

3:52
Hello-IAN – Interactive Autism Network has some great article on Telling Your Child About Autism.http://www.iancommunity.org/cs/articles/telling_a_child_about_his_asd
3:53
In addition we have lots more information about AS/HFA including a section on AS/HFA and your Family in our tool kit:http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:55
Comment From Rechelle

What is a successful way to discipline a child w/Aspergers and HFA? I am not a spanker.

3:58
Dr Tony Attwood, author and therapist, is an expert on this subject–
How do you discipline a child with Asperger’s Syndrome?
http://www.autismsupportnetwork.com/news/how-do-you-discipline-child-aspergers-syndrome-autism-203392344
3:59
Comment From Guest

Any suggestons as to how to explain to my 6yr old that my 4 yr old has autism and he really cant help some of his behaviors. Im just not sure how to start that “talk”.

3:59
Hi Guest. You can read more about disclosing autism to your child and other family members at our IAN site: Telling Your Child. It has a section on telling siblings.http://www.iancommunity.org/cs/articles/telling_a_child_about_his_asd. We have also recently launched a Siblings Tool Kit (in addition to a Parent, Grandparent and Friend Tool Kit) for children ages 6-12 that helps families explain autism to their siblings. You can download the kit for free and view other resources at:http://www.autismspeaks.org/family-services/family-support-tool-kits#siblings. We also have a list of Books for Siblings athttp://www.autismspeaks.org/family-services/resource-library/books#siblings
4:00
Thank you all for joining our Office Hours chat today! If we have not been able to answer your questions, please feel free to call us at 888-AUTISM2 or email us atfamilyservicse@autismspeaks.org.
4:00
We are always happy to help!
4:00
See you next week!

IAN’s Bullying Survey: Addressing a Troublesome Issue

November 7, 2011 4 comments

By Connie Anderson, Ph.D. Community Scientific Liaison, IAN Project at the Kennedy Krieger Institute

The Interactive Autism Network (IAN) has launched a national online survey on bullying and children with ASD to begin to address this troublesome issue in the lives of children on the autism spectrum.

As Community Scientific Liaison for this national online autism research project, I hear from families all the time, and bullying is one concern they raise often. Just to make it through a school day, they tell me, a child on the spectrum may have to contend with sensory issues, social challenges, and attention problems. Add bullying into the mix and what was challenging can quickly become impossible, leading to a sense of isolation and failure. I hear of children tormented at lunch or on the playground, when a personal assistant (if any) may be taking a break. I hear of children who are provoked into meltdowns or aggressive outbursts by other children who know how to push their buttons, maybe by attacking a cherished interest. (“Pokemon is stupid.”) I hear about cases where children with meltdowns are accused of being bullies, and may suffer consequences like suspension from school as a result.

I’m also the mother of a teenager with Asperger’s, who has had his sweatpants pulled down around his knees in Tech Ed class, and been tormented at lunch until he wants to hide in the Special Ed Resource room rather than go to the cafeteria. I’m the friend of a mom who decided to home school her daughter with ASD after constant bullying made school a place so wrought with anxiety she could no longer function there.

These stories are all too common. Anecdotes from adults with ASD, children with ASD, and their families indicate that individuals on the spectrum may be especially vulnerable to bullying, and a few small studies have provided some evidence of this. Now, the online Bullying and School Experiences of Children with ASD Survey will collect more in-depth information on a variety of bullying situations from a large number of families to explore the extent of these problems in the lives of children with ASD.

I hope you’ll spread the word about the survey to all who may be interested.

Learn more about the Bullying Survey.

Read an article about bullying and children with ASD.

The Happy Hannah Dance

January 30, 2011 10 comments

This is a guest post by Teresa Foden, Assistant Editor of the IAN Project at Kennedy Krieger Institute.

Sometimes you look at a rescue dog and wonder why he was dropped off at the shelter. This was not the case for Bailey. He was a mess. Transported north more than 500 miles in hopes that someone at a dog-rescue event in Maryland might be fool enough to adopt him, he barked, he yelped, he yanked the leash…and this turned out to be Bailey on his best behavior. In line to be euthanized at an animal shelter down South, Bailey, a Catahoula leopard dog who flunked his tracking training, had danced when the staff delivered his food. It was described as a four-step sort of canter dance, really something you had to see to believe. It saved his life. But now it looked like he had “flunked” adoption, too, his antics keeping potential adoptees at bay (oh, I forgot to mention – he bayed, too). As volunteers for the rescue organization, we agreed to take Bailey home, temporarily, until another volunteer could retrieve him. Hopefully, it would be soon.

But one of our twin daughters, Hannah, found in Bailey her four-legged soul mate. Hannah had always been a little different from other children, but most people, well, adults mostly, found her endless monologues about dogs – their behavioral psychology, their strong loyalties, even their genetics – somewhat engaging and endearing. And when that didn’t work, she had this hopping sort of dance she couldn’t contain when she was happy. We called it the “Happy Hannah Dance.” But that all changed in middle school, when teachers lost patience for her idiosyncrasies and she became the brunt of teasing from her disdainful classmates. At 12, she was diagnosed with Asperger’s. Rather than giving her comfort that there was a name that explained her difficulties, that there were other people who saw the world through a similar lens, the official confirmation that she didn’t “fit in” was devastating for her. The Happy Hannah Dance was over.

In the following months and years, Bailey grew to be a central part of our family. When Hannah says, “Sit,” (sometimes) he sits. When Hannah says, “Lie down,” (sometimes) he lies down. When Hannah says, “I love you, Bailey,” he crawls into her lap on the floor and they seem to become one. During Bailey’s time with us, we have watched Hannah grow to trust not only Bailey, but herself. She and Bailey have been engaged in a metaphorical dance. Like many families, we have seen a relationship with an animal contribute to the emotional healing of someone with a disability. It’s hard to put into words, and we are left saying inadequate things like, “Those two, they saved each other.” Like others with similar experiences, we wonder if there is any possibility that what we see is real enough to be actually measured, scientifically tested in a research situation, and someday delivered to children. Is there a way to harness the bond that seems to arise naturally between many children and animals to treat something we don’t fully understand, something like autism?

Read IAN’s Dogs, Horses, and ASD: What Are Animal-Assisted Therapies? to find out more about the state of the research into animal-assisted therapies.

Learn about the Interactive Autism Network and how you can participate in autism research.

December 14, 2010 IACC Meeting Summary

December 21, 2010 4 comments

The Interagency Autism Coordinating Committee (IACC) met on Tuesday, December 14, at the Bethesda Marriott in Bethesda, Md. This is the fifth time the Full Committee has met in 2010. The IACC has made significant progress in the past year in the following areas:  1) releasing the 2010 Strategic Plan for Autism Research (February 3); 2) publishing the 2008 Portfolio Analysis Report (January 19); 3) releasing the 2009 Summary of Advances in ASD Research; 4) hosting first annual IACC Services WorkshopBuilding a Seamless System of Quality Services & Supports Across the Lifespan (November 8); and 5) updating the 2011 Strategic Plan for Autism Research.

IACC Chair and NIMH Director Thomas Insel, M.D. opened the meeting with a presentation on research developments since the last IACC meeting. Dr. Insel reported that autism was a “hot topic” at the recent Society for Neuroscience meeting with a 30 percent increase in abstracts focused on autism. The meeting also included a Public Symposium, Autism: Progress and Prospects, chaired by Gerald Fischbach, M.D., Scientific Director, Simons Foundation Autism Research Initiative.

The IACC meeting agenda was devoted primarily to consideration of updates to the Strategic Plan for Autism Research. Members of the Strategic Planning Subcommittee presented the IACC with modifications to the existing plan with appendices of new research advances, funding gaps and new research opportunities for each section of the plan. The Committee approved most of the recommendations made by the Subcommittee.

The Subcommittee’s recommendations included objectives to better understand wandering and fever in persons with ASD to Question 2 of the plan.

The Committee voted to retain the title of Question 3, “What caused this to happen and how can it be prevented?” Updates to Question 3 include reference to a Workshop “Autism and the Environment: New Ideas for Advancing the Science,” held September 8, 2010, which was co-sponsored by Autism Speaks and NIEHS. The meeting involved environmental scientists who have successfully identified environmental risk factors for other conditions, such as Parkinson’s Disease, in an effort to develop better strategies for discovering environmental risk factors contributing to the etiology of ASD. The committee voted to accept new research objectives, including in the following areas: epidemiological studies that take advantage of special populations or expanded existing databases to inform our understanding of environmental risk factors for ASD, to include  adverse events following immunization (such as fever and seizures), mitochondrial impairment, and siblings of children with regressive ASD; and the role of epigenetics in the etiology of ASD, including studies that include assays to measure DNA methylations and histone modifications and those exploring how exposures may act on maternal or paternal genomes.

Recommendations for Question 4 were also accepted. These included research objectives to assess the effectiveness of interventions and services in broader community settings by 2015; to study interventions for nonverbal individuals with ASD; and to focus on research on health promotion and prevention of secondary conditions in people with ASD. Secondary conditions of interest include overweight and obesity, injury, and co-occurring psychiatric and medical conditions.

The IACC’s review of the Subcommittee’s recommendations for Question 5 included extensive discussion about how the IACC should address issues related to mortality, safety, and health within the IACC. New research objectives were approved to support research on health and safety issues leading to mortality.

The Question 6 recommendations on future needs of adults highlighted the urgent need for additional scientific research specific to this group. In 2010, several national advocacy groups devoted private resources to initiatives on adult services that have been brought to the IACC’s attention.

Finally, Question 7 is focused on the infrastructure and surveillance needs. The committee noted concern in funding availability for these needs. New research objectives were added. These included objectives to establish a robust network of clinical research sites that can collect and coordinate standardized and comprehensive diagnostic, biological (e.g. DNA, plasma, fibroblasts, urine), medical, and treatment history data that would provide a platform for conducting comparative effectiveness research and clinical trials of novel autism treatments; and to create an information resource for ASD service providers, researchers, families, and people with an ASD which serves as a portal to obtain the most recent evidence-based reviews and plans for intervention, services, and support.

“Public input has been critically important to the Strategic Planning process,” says Geraldine Dawson, Autism Speaks’ chief science officer and IACC member. “Based on feedback received from both consumer and professional stakeholders during the Request for Information phase, the recommended Strategic Plan will include new objectives that enhance the focus on environmental factors and lifespan issues affecting adolescents and adults living with autism.”

The afternoon session began with the Public Comments portion of the meeting. Ms. Idil Abdull, parent advocate and co-founder of the Somali American Autism Foundation, thanked the IACC for its decisive action on exploring the Somali autism issue and urged it to sustain this effort. Also presenting during Public Comments was Mrs. JaLynn Prince, President and Founder of the Madison House Foundation, based in Montgomery County, Md. The mission of the Madison House Foundation is to identify the lifelong needs of adults with autism and fill those needs through education, awareness, and advocacy. Mrs. Prince encouraged the IACC to explore the expertise of organizations like the Madison House which have been dealing with adult service issues in local communities throughout the country.

The agenda also included several updates on issues raised during recent meetings. At the October meeting, the IACC asked Autism Speaks, NIEHS and CDC to investigate issues raised concerning the Somali population in Minnesota. Coleen Boyle, Ph.D., Acting Director, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention and IACC Member, Cindy Lawler, Ph.D., National Institute of Environmental Health Sciences, and Autism Speaks’ chief science officer and IACC member Geraldine Dawson, Ph.D. provided an update on their efforts with respect to this issue. It was reported that collectively $350,000 has been committed to begin to study this issue, with Autism Speaks contributing $100,000 to this effort.

In response to a presentation on Wandering and Autism at the October meeting, the IACC created a subcommittee on safety issues the first task of which is to write the secretary of HHS on the recommendations that were made during the meeting. Lyn Redwood, R.N., M.S.N. Co-Founder and Vice President, Coalition for Safe Minds and Co-chair, Safety Subcommittee, and Alison Singer, President, Autism Science Foundation and Co-chair, Safety Subcommittee, reported on the Subcommittee’s recent meeting. The IACC authorized the Subcommittee to proceed with its information gathering in order to finalize the letter to the secretary. To inform this letter, the Subcommittee’s representatives will meet with the Departments of Education and Justice and will develop a Request for Information (RFI) on wandering. It was also announced that Autism Speaks and the Autism Science Foundation will fund a study utilizing the Interactive Autism Network (IAN) on this issue.

Services Subcommittee Co-chairs Ellen W. Blackwell, M.S.W., Centers for Medicare and Medicaid Services and Lee Grossman, President and CEO, Autism Society, reported on their Services Workshop on November 8 and subsequent subcommittee meeting. The goal of the workshop was to determine a set of recommendations to make for the Secretary of HHS. The Subcommittee is using slides from the workshop to inform the recommendations to be sent to the Secretary. The Subcommittee believes another workshop on services will be necessary next year.

Finally, the IACC solicited the input of IACC member Alan E. Guttmacher, M.D., Director Eunice Kennedy Shriver National Institute of Child Health and Human Development, on the implications of the proposed addition to Question 1 of the Strategic Plan to conduct five studies on the ethical, legal and social implications of autism screening research, including at least one study on the implications of potential future genetic testing. The committee agreed to look at what other diseases have done in this area and will convene a workshop next year.

The IACC is scheduled to meet again on January 18 and will finish its update of the Strategic Plan’s Introduction section at that meeting before approving the plan.

How can families participate in research studies?

December 21, 2010 Leave a comment

“Got Questions?” is a new weekly feature on our blog to address the desire for scientific understanding in our community.  We received over 3000 responses when we asked what science questions were on your mind. We answered a few here and the Autism Speaks Science staff will address the other themes we received in this weekly post.

Great question! We hope more families wish to get involved in research. One easy way to get started is through an online portal called the Interactive Autism Network (IAN) at ianproject.org. This site allows you to participate in research from your home. You can also find studies and participate in programs supported by Autism Speaks. If you are interested in a clinical trial (which is not just about treatment, but also diagnosis, identifying subtypes, etc.) you can find more information at clinicaltrials.gov.

The Next Big Thing?

June 14, 2010 10 comments

This post is from Guest Blogger, Stanley Nelson, M.D. Dr. Nelson is the Director for the UCLA Site of the NIH Neuroscience Microarray Consortium, and Professor of Human Genetics and Psychiatry at the David Geffen School of Medicine at UCLA. Dr. Nelson was also a co-author on last week’s collaborative Nature paper.


Investments in the genetics of autism have been substantial and the results are beginning to come forth, with last week’s announcement of the latest findings from our collaborative Autism Genome Project adding to previously identified genes and copy number variations that made last year’s Top 10 Autism Research Achievements of 2009.  The latest results, funded in large part by the tremendous efforts of Autism Speaks, are interesting alone, and I hope that all have learned that there are indeed novel genes being identified that lead to autism.  However, there is a perhaps more important message from the paper which relates directly to the couple hundred thousand families directly affected by an autism spectrum disorder in the US alone.

Within the recent Nature paper are compelling new findings demonstrating that autism can be caused by genetic mutations in a wide range of different genes, but the findings highlight how complex the genetic causes will be, likely in the hundreds. With this level of complexity, it is also clear that this sized sample that took 15-20 years to collect at the cost of tens of millions of dollars including molecular testing and analytical effort, we were only able to find genetic causes for a small minority of the children with autism (a few percent). So detecting the meaningful gene variants is largely a game of statistics.  With the relatively small size of the autism samples available to us today, many gene mutations that may be causative in an individual with autism will go ‘undetected’ because our sample size lacks the statistical power to identify them as definitively associated with autism. This is because these causative variants are each “rare” in the whole autism population. Even though rare, each gene variant that confers risk is important.  Why?  When considered together, these gene variants will collectively explain the majority of cases of the disorder, as well as inform us greatly about the still largely unresolved biological causes, both genetic and environmental. To get us to the next phase of understanding the genetic risk of autism, we need a way to cost-effectively recruit tens of thousands of affected individuals and their families to enable the appropriate large scale genetic studies needed to address this pressing scientific need. My attitude is well described in an interview written by Nancy Shute at US News and World Report.

Until recently, we have not had a nationwide infrastructure that could allow anyone in the US to participate with a child with a diagnosis of autism. That has changed with the initiation of the IAN Genetics Project, funded by Autism Speaks through the High Risk, High Impact Initiative. Using the web portal of the IAN Genetics Project, families provide information about their child through simple web-based questionnaires that require only a few hours effort from home, anytime. Families also give consent for the DNA collection portion of study online. Interested families may participate in this study by taking their child to one of 1,600 blood draw sites nationwide with our corporate partner, Labcorp. This is all made possible through the Interactive Autism Network, and more information can be found at IANPROJECT.ORG, where I encourage all families with an affected child to register and complete the requested questionnaires. For those interested in learning more about the DNA Study, specific information can be found by following this link.   Any questions about the project can be answered by IAN staff, who can be reached through the link.

Please register at IANPROJECT.ORG, even if not interested in the DNA Study. Simply filling out the online forms provides powerful new data to researchers that can only come from many thousands of individual families taking the time to help solve the complex issues of autism beyond genetics alone. Together we can take this next step to help reveal the causes of autism and help alleviate the struggles of those living with autism today.

Categories: Science Tags: , , , ,

Grandparents: Near or Far, Still Amazing

June 1, 2010 7 comments

This is a guest post by Cheryl Cohen, who is the Online Community Director of IAN Project at Kennedy Krieger Institute.

Here’s an interesting family photo from 1934. In it is my mother at age four, my grandmother, my great-grandmother (who was partially paralyzed by polio), and my great-great grandmother. It was the Depression. These four generations lived together in a small row house in Philadelphia. Like many other multi-generational households, they cooked and ate meals together, shared economic resources, and raised the children. Though the percent of the population living in multi-generation households has declined since then (although it is now on the rise), grandparents and other members of the extended family still play a large role in helping raise children – especially when a child has special needs.

With the help of grandparents, who wanted to share their experiences and learn about the role of other grandparents, the researchers at the Interactive Autism Network (IAN) developed the Grandparents of Children with Autism Spectrum Disorders Survey. We knew that grandparents played a major role in helping their adult children and their grandchildren. But, we wanted to learn (using scientific methods) how grandparents support the emotional and economic needs of their adult children and their affected grandchildren. We also wanted to know how having a grandchild with ASD had changed their lives.

More than 2,600 grandfathers and grandmothers of grandchildren with ASD participated in this survey, which we administered on the Internet.  They came from all 50 U.S. states and the District of Columbia, and every kind of locale, with 17% from cities, 23% from rural areas, and 60% living in the suburbs. They represented a wide age range, from people in their 40s to people in their 80s, and had varied educational backgrounds.  Though the goal of the survey was to gain knowledge about the nature and extent of the role of grandparents, we also wanted to find out the support, services, and information needs of grandparents.

Participating grandparents told us some very interesting things:

  • So that the grandparent could help his/her grandchild, 20% of the families had moved closer to each other. Nearly 8% had combined households.
  • About 30% were the first to notice that there was a problem in their grandchild’s development.
  • Nearly 90% felt that the experience of facing their grandchild’s situation together had brought them and their adult child closer.
  • About 6% of the grandparents told us that a family situation had become so untenable they had taken on the role of parent.
  • While 86% of the respondents were coping very well or fairly well, 14% reported that they were coping poorly.

Find out more IAN’s two-part series, Grandparents of Children with ASD.

Learn about the Interactive Autism Network (IAN) and how you can participate.

Interested in statistics on the multi-generational household in the United States? Visit the Pew Research Center’s The Return of the Multi-Generational Family Household.

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