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Keyword: ‘Alycia’

Increased Risk of Autism in Siblings: Live Facebook Chat with Alycia Halladay, Ph.D.

August 15, 2011 29 comments

Autism Speaks’ Alycia Halladay, Ph.D., will be live online this afternoon (4 pm EDT, 1 pm PDT) to answer your questions on the just released study showing a high risk of autism among the younger siblings of children on the spectrum. Dr. Halladay organized and continues to help lead the High-Risk Baby Siblings Research Consortium that conducted the research and which continues to study the factors that predispose some families to autism recurrence. Please join us and bring your questions. Meanwhile, please see our news item and a special commentary from Autism Speaks’ Chief Science Officer Geri Dawson, Ph.D.

To join the chat, visit our Facebook tab.

To read the entire transcript from this chat, please visit here.

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.


Family Services Office Hours – 12.07.11

December 9, 2011 3 comments
2:58
Hello everyone! Welcome to our Family Services Office Hours! We are here to help answer your questions, and provide you with some great resources!
2:59
Comment From rach

I have two boys with Autism no one in my family has autism why is this? Both boys are from two dfferent Dads and their is also Autism not found on either sides either.

3:00
Hi Rach. That is a great question. We don’t have all of the answers about autism and its causes, however what we do know is that most cases of autism appear to be caused by a combination of autism risk genes and environmental factors that influence early brain development.
3:01
You can email our Science team at science@autismspeaks.organd they are happy to answer more science-specific questions. You can read a lot more about autism and what causes it on our website at www.autismspeaks.org/what-autism
3:02
Alycia Halladay, a member of our Science team, had a live chat earlier this year about Increased Risk of Autism in Siblings. You can read the transcript here:http://blog.autismspeaks.org/2011/08/16/increased-risk-live-chat/
3:02
Comment From Jodie

Hi. I am looking for grants to help pay for an Ipad.

3:02
Hello – There are a number of organizations that have implemneted iPad grants to families. You can find them on our website in the Resource guide.
http://www.autismspeaks.org/family-services/resource-library/autism-apps 
In addition, the Family Services Dept will begin it’s Technology Grant in January, 2012. Check back on our webiste for updates.
3:03
Comment From angie

my son is two and he speaks very little. how old does he need to be before he can be tested for autism or something like it?

3:04
Comment From Guest

Will someone PLEASE call me? My name is Terri Limberg. My home # is 417.681.0397 in Lamar, Missouri…We have private insurance but want to know if there is any assistance offered in having our 7 1/2 year old grandson Ezekiel professionally evaluated by a diagostic team for possible asbergers? We live paycheck to paycheck and just cannot pay the deductibe and out of pocket..

3:04
Hi Angie. Sometimes autism can be diagnosed as early as 18 months or before. If you suspect your son may have autism, you should call your pediatrician for an evaluation. You can read more about the signs of autism, and view videos about some of the symptoms at these 2 links: http://www.autismspeaks.org/what-autism/learn-signs and http://www.autismspeaks.org/what-autism/video-glossary
3:05
Hello Guest
- You can call the Autism Response Team – ART at 888-288-4762, staff are available e to answeer you question.
3:05
Comment From Darlene Baboo

I am the grandmother of an autistic grandson and found there isn’t much available in the state of Delaware any information you may have would be very helpful.

3:05
Hi Darlene. We have a very comprehensive Resource Guide that contains lots of resources and State Information. You can visit our Resource Guide at www.autismspeaks.org/resource-guide, click on Delaware and search within your state.
3:06
We also have a great Support Tool Kit for grandparents, which may be helpful to you. You can view and download the kit for free at http://www.autismspeaks.org/family-services/community-connections/celebrating-grandparents
3:06
Comment From Guest

I have a 10 year old nephew that I baby sit. I cannot get him to sit on the potty to go #2 he would rather dirty his pants. He is very scared of the potty. What can I do to help him and get him trained he will pee in there but not the other nor at school.

3:09
Hello Guest – Potty Training a child with ASD can be a challenage and its important to work closely with his teacher or trained professional to set up a plan that can be implemneted across all enviromenets. There are a number of very helpful links to books on Toilet Training
http://www.autismspeaks.org/family-services/resource-library/books
3:10
Comment From Guest

I am a mother of three boys, all of whom are on the spectrum, and I am looking for resources in Cedar Park, TX (North Austin). We moved here four months ago and don’t know where to look.

3:10
Hi Guest. You can search our online Resource Guide for services in Cedar Park, TX at www.autismspeaks.org/resource-guide. Simply click on Texas, click the category you are looking to search and then type in your zip code along with a mile radius. We suggest putting in a large mile radius because if there aren’t any within 5-10 miles or so, you can contact the ones a bit further away who may be able to help you or to point you to resources closer to you. All of these resources have been submitted by the providers themselves or by families in our community who have found them to be helpful.
3:10
Comment From David

My son is almost 18 now. He was diagnosed at an early age with ASD. His doctor mention to us that we need to think about filing for Social Security Disability for him. We are in Florida. Any advice before we start or what to expect?

3:13
Hi David- Family Services offer a great Tool Kit for free to parents of individuals with ASD. You can order the Kit at:
http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit The Kit cover all areas related to transition and will give you information on Social Security Benefits. Please order it today!
3:13
Comment From misty

is there services in washington that medical covers

3:13
Hi Misty. We don’t list the services in our Resource Guide by fee schedule or by who takes what but you should search the guide and call the providers to check and see what insurance they take. I also suggest you search the Local Autism Organizations category, because those organizations in your area will most likely be better able to point you in the right direction and give you more specific information about local services.www.autismspeaks.org/resource-guide
3:13
Comment From Rach

Are there any Autism support groups near Frankton, Indiana

3:15
Hello Rach – Family Services Resource Guide is a great resource for local autism services
Click on your state,and then click on a category, you will be asked to enter a zip code in the state you picked. After you enter your zip code and hit the enter key, a map of all the listings of that category in the state will appear.
http://www.autismspeaks.org/family-services/resource-guide 
3:15
Comment From misty

hi i have a boy 8yrs who has PDDnos? dont understand this diagnosis?

3:15
Misty and for those of you with recently diagnosed children. We have a 100 Day Kit and an Asperger Syndrome/High-Functioning Autism Tool Kit that we send our free of charge to families of children diagnosed in the last 6 months to help guide them through the months following diagnosis. You can order a FREE copy by calling our Autism Response Team at 888-AUTISM2.http://www.autismspeaks.org/family-services/tool-kits/100-day-kit
3:16
You can also learn more about autism, its causes, treatments, etc. at www.autismspeaks.org/what-autism
3:17
Comment From Patty

Lately my 7 year old daughter with PDD has been flapping her hands more frequently. Is this something I should be worried about?

3:21
Hi Patty- Its important to understand why your daughter has increased this behavior. I would recommend you speak with her school team or other professionals who can help you to analyze the increase in this behavior . Individuals with ASD oftern use behavior as a way of communicating, and for that reason you will want to know her intentions. Be sure to consult with a professional who understands behavior and has expereince wirking with ASD individuals.
3:21
Comment From Jodie

With all of the cuts to special education, it has become difficult to get the services my son needs. How can I go about finding an advocate for help?

3:21
Hi Jodie. We have a list of advocates in our Resource Guide which you can search at www.autismspeaks.org/resource-guideby clicking on your state and then the Advocates page. We also have lots of information on our website about legal rights, including a comprehensive IEP guide about how to effectively get the services you need in school athttp://www.autismspeaks.org/what-autism/your-childs-rights
3:22
Comment From Rechelle

Wondering if there is any way to motivate an Aspie to do his homework/classwork?

3:24
Hi Rachelle – Since each person’s response is going to be different depending on what motivates them, I would recommend you consult with a professional who understand behavior and the ASD diagnosis.
In additon, Family Services offer a Aspergers’s Syndrome/HFA Tool Kit at
http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:24
Comment From Sheri

Is there any kind of treatment assistance available in Texas that is not based on a parents income?

3:24
Comment From LATOYA

I WAS TRYING TO FIND OUT ABOUT GRANTS TO HELP PAY FOR ABA SERVICES. AND ALSO TO FIND PROGRAMS FOR THE SUMMER. I LIVE IN PLAQUEMINE, LA

3:25
Hi Sheri and Latoya. You can search our Resource Guide for Family Grant Opportunities, as well as Local Autism Organizations in your area who may know of treatment assistance resources at www.autismspeaks.org/resource-guide. We also have a list of family grant and assistance programs in our Resource Library at http://www.autismspeaks.org/family-services/resource-library/families-need
3:25
Comment From julie

My son is 11, high functioning PDD-NOS. Diagnosed in April. He has always coped well in school, but when he gets home it is like he releases all the stress of having to conform all day and can get very angry and likes to be alone in his room for as long as we will let him. Getting him to do his homework is sometimes impossible no matter what sort of boundaries, rewards, disciplines we have tried. How do I tell the school that so it can get in his IEP and affect his homework requirements? They tend to think it must be his home environment since he does “fine” at school.

3:30
Hello Julie- You raise a great question. How can I get something wrritten into your child’s IEP? Any parent has a right to call an IEP meeting and present information and request an assessment? Is the avoidant behavior observred in the classroom as well as the home enviroment? There are many questions you need answers to, as well as a plan that will be used in school and home. The Family Servies IEP guide will help you with this process:
http://www.autismspeaks.org/sites/default/files/gp_iep_guide.pdf
3:30
Comment From Kimbyr

I am looking for grants in New Hampshire to help pay for ABA therapy. Any suggestions?

3:31
Hi Kimbyr! You can search our Resource Guide for Family Grant Opportunities, as well as Local Autism Organizations in your area who may know of treatment assistance resources atwww.autismspeaks.org/resource-guide. We also have a list of family grant and assistance programs in our Resource Library athttp://www.autismspeaks.org/family-services/resource-library/families-need
3:32
Comment From Amy

Any tips on moving a 3-year-old with high-functioning autism from our bedroom to sharing one with his brothers?

3:35
Hi Amy– I would recommend you work with your pedatrician and other professional from your son’s Early intervention Team to come up with a plan that can be successfully implemented over time. You are absolutely right to seek help and advise on this significant transition. I am including links to our Sibling Support Guide and Sleep and Autism webpages.
3:37
Comment From Jennifer

What is a good diet to try my 4yr old son on he has Autism and is nonverbal and he loves to eat snacks over eating real food? What would be a good communication device for him?

3:41
HI Jennifer – I recommend you consult your child’s MD on the issue of nutrition. Children with ASD are known picky eaters, it will take a team effort to come up with a plan that can addresss all of the issues. I would ask your pediatrician for a referral to a professional who has expereince with nutrition with children with ASD
3:41
Here is a link to our Nutrition and Autism page, which has lots of great information and resources:http://www.autismspeaks.org/family-services/health-and-wellness/nutrition
3:42
You can also search the Diet/Nutrition category in our Resource Library http://www.autismspeaks.org/family-services/resource-library/diet-nutrition or search our resource guidewww.autismspeaks.org/resource-guide for professionals in your area
3:42
Comment From Claire Marie

Relocating from PA to DE. Any advise on how to make it a smooth transition?

3:44
Hello I want to let you know about our Resource Guide
http://www.autismspeaks.org/family-services/resource-guide, you can serach the DE resources in a variety of categories.
3:44
You may want to search the state information categories and call the state offices for more information about the resources and policies in DE for children with autism.
3:45
You may want to contact Autism Delaware, a great organization we have heard about in Delaware for families of individuals with autism: http://www.delautism.org/
3:47
Comment From Deborah

My son is 17 and a senior at a public high school. I have some questions: 1. Why is it that it is so difficult to find a professional who knows how to diagnose autism? My son was almost 17 before we found someone who diagnosed him properly and is finally helping him! 2. How do we prevent bullying or deal with it once it’s happened? My son has been bullied almost his entire school career; every day I worry I’m going to get a call about someone else who bullied him. The only response we get from administration is that they need a witness and often no one will come forward! 3. My son wants to go to college. What do we look for in a school that will help him to be successful both socially and academically? 4. Are there any grants or scholarships for Asperger’s or Autism students going to college? Where do I find them?

3:49
Hi Deborah – I want to offer you the link to the Transition Tool Kit,
http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit 
the kit is available free online to parents whose children are 14-22 years old. You can order a kit online.
3:50
We also have a list of resources for young adults/adults with autism in our Resource Library that includes some college information: http://www.autismspeaks.org/family-services/resource-library/adults-autism
3:50
The Transition Tool Kit is an extremely comprehensive kit that contains a great deal of information about individuals with autism on their transition from school into adulthood. We can send one to you free of charge at the above link.
3:51
Deborah – I want to add a link to 3 articles on bullying and ASD
http://www.iancommunity.org/cs/articles/bullying
3:54
Comment From Laura

I need help finding counseling services for my thirteen year old son that has verbal apraxia with PDD. We are located in central Missouri near St. Louis.

3:54
Hi Laura! I suggest you search our vent comprehensive Resource Guide for services in your area. We have many listed in St. Louis and the surrounding towns: www.autismspeaks.org/resource-guide
3:55
You may also want to order our Transition Tool Kit which is very helpful for families of children with autism on the transition to adulthood: http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit
3:57
Comment From Laura

Thanks!!

3:57
Thank you all for joining us for Family Services Office Hours today! If we were unable to answer your questions, or you have anything else to ask, feel free to contact our Autism Response Team at 888-AUTISM2 or familyservices@autismspeaks.org.
3:57
We will see you right back here next Wednesday!
Categories: Family Services Tags: , ,

Family Services Office Hours – 11.10.11

November 10, 2011 1 comment

Office Hours easily connects families to a wide variety of autism-related resources, including Family Services Tool Kits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code.

Family Services Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.

The Office Hours sessions are staffed by ART coordinators who are specially trained to connect families affected by autism to resources.

2:54
Hey Everyone! We will be on in a few minutes!
2:58
Ok! We are here and happy to start taking questions!
3:00
Comment From Melissa

How much information is available on the possibility of autism being genetic? From parent child?

3:02
Hi Melissa! Alycia Halladay, Ph.D., hosted a LIVE chat dealing with genetics! Here is the transcript!http://blog.autismspeaks.org/2011/08/16/increased-risk-live-chat/
3:02
She was also interviewed on CNN about autism and siblings, which you can see here:http://blog.autismspeaks.org/2011/08/18/siblings-news-coverage/
3:03
In addition, our Chief Science Officer Geri Dawson did a LIVE Chat about the Genetics of Autism. She is great! Here is that transcript: http://blog.autismspeaks.org/2011/10/27/transcript-dawson-schere/
3:04
Our science team regularly posts blogs explaining new research findings about autism. Stay connected by checking up with us atblog.autismspeaks.org!
3:04
Comment From Shannon

Is PDD-NOS actually a form of autism?

3:04
Hi Shannon! The answer is yes! Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) is one of the autism spectrum disorders and is used to describe individuals who do not fully meet the criteria for autistic disorder or Asperger syndrome.
3:04
You can learn more about it here!http://www.autismspeaks.org/what-autism/pdd-nos
3:05
Comment From Kathy

Hi! I am the mom of a 10 yr old High functioning son and I am having trouble finding any help since he seems so “normal”. He gets no help in school and limited help through his dr’s. Is there help out there for High functioning Aspy’s?

3:05
Hi Kathy! We have a great Asperger Syndrome/High-Functioning Autism Tool Kit. It is mostly for newly diagnosed families but contains lots of tips and information for all families of children with AS/HFA. http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:05
We also have plenty of resources on our website related to helping people with Asperger Syndrome. Here are a few great links:
3:06
Our Resource Library contains tons of great books, magazines, online software, toys, game, apps and much more!www.autismspeaks.org/family-services/resource-library
3:06
Comment From Haley

Hi! I was just wondering where I could get information or if there was someone I could talk to about careers in autism? I am in college right now and I would like to talk to someone who could help me make sure I’m on the right path….

3:07
Hi Haley! That is so great you are interested in a career in autism. If you are looking to provide direct services, I suggest you search our very extensive online Resource Guide. You can click on your state and find service providers in your area in lots of different fields (schools, therapists, after school programs, recreation activities, etc.) Those providers will most likely have lots of information to help point you in the right direction!www.autismspeaks.org/resource-guide
3:08
Comment From Brenda

I have been reading a PDD and ADHD and how some ADHD medicines, actually help with the PDD. Is there any information you can share on this?

3:08
Many families of children with autism spectrum disorder (ASD) are faced with the option of using medicines to help treat their child’s challenging behaviors. This is a tough medical decision and there is no one right answer.
3:09
Comment From Shannon

I have read the forum in autism speaks and it is great. I just wanted to make sure that when I say my son has autism that I am not exaggerating. It sure feels like it!!

3:09
Shannon, we also have a great Learn the Signs campaign and an Autism Video Glossary that contains lots of videos that show symptoms of autism, compared to neurotypical children. They have been really helpful to so many people.
3:11
Comment From Jane

My son’s father and I are divorced and his father would like me to have him and his nt brother for extended time (for respite) however I don’t have the home which can accommodate his needs. He’s registered with DDD but they are unable to help. Are there any other resources for me to look into?

3:13
Hi Jane – that sounds like a very tough situation you are in. Your ex-husband needs to stick with the rules of the court. You can search our Resource Guide by your state to find a lawyer in your area as well as respite care options.http://www.autismspeaks.org/resource-guide
3:13
Hi Shelly. You are not alone! We hear from lots and lots of families who have grandparents who do not understand the diagnosis or are unwilling to accept it. Everyone responds to the diagnosis differently and many people need time.We would suggest gradually introducing your parents to the idea, and emphasizing how important it is to you that they understand and are able to help you. I’m sure they love their grandchildren so much so will understand that the way they are treating him isn’t working to his benefit.
3:13
Comment From Shelly

I have a three year old with PDD-NOS. I am having a hard time trying to educate my parents (his grandparents) on the subject. They are still in denial and I have even given them the tool kit for grandparents. They refuse to even look at it. They do not even want to make changes in the way they act arond my son (which makes him digress after every one of their visits.) What more can I do?

3:13
Hi Shelly. You are not alone! We hear from lots and lots of families who have grandparents who do not understand the diagnosis or are unwilling to accept it. Everyone responds to the diagnosis differently and many people need time. We would suggest gradually introducing your parents to the idea, and emphasizing how important it is to you that they understand and are able to help you. I’m sure they love their grandchildren so much so will understand that the way they are treating him isn’t working to his benefit.
3:14
Perhaps you want to speak to one of your parents who may be more willing to listen. It is important to stress that a family’s understanding and willingness to help their loved one with autism is crucial to the child’s progression and happiness.
3:15
Comment From elizabeth

I have a non verbal 2 1/2 year old that was just diagnosed with severe autism. where can i get PECS cards that are not going to banrupt me?

3:15
Hi Elizabeth! Have you tried our 100 Day Kit? It is a guide specifically created for families of children recently diagnosed with autism. You can read it here: www.autismspeaks.org/family-services/tool-kits/100-day-kit
3:16
I suggest you call our Autism Response Team at 888-AUTISM2. They can take your information and place your order. It is FREE!
3:17
I also suggest you search our Resource Library for tools like PECS cards. One of our categories is for visual tools that have been helpful to families in our community:http://www.autismspeaks.org/family-services/resource-library/visual-tools
3:18
Comment From Sarah

My “step son” (he is legally my son but not biologically) is Autistic. How likely is it my husband and I will have a child who is Autistic? I know that it affects about 1 in 110 children, 1 in 70 boys, but is it more likely since my husband already had one.

3:19
Hi Sarah! We have a few chat transcripts that you may find helpful. Here is the ‘Genetics of Autism: What It Means for You’ hosted by Geri Dawson, PhD, and Steve Scherer, PhDhttp://blog.autismspeaks.org/2011/10/27/transcript-dawson-schere/
3:20
Recently the High Risk Baby Siblings Research Consortium made the news with the findings that autism recurs in families much more frequently than had been realized. Here is more information! http://blog.autismspeaks.org/2011/08/30/the-babysibs-consortium-important-findings-ahead/
3:20
Comment From Maria

Do you know what therapies can help with behavior problems?

3:20
Hi Maria. We have a list of treatment options on our website in the What is Autism page. These are all treatments with documented science research behind them. In the left column of the page you will see a long list. You can click each of them to learn more about what that treatment involves.http://www.autismspeaks.org/what-autism/treatment. Our Resource Guide lists lots of therapists who specialize in these treatments www.autismspeaks.org/resource-guide. It is important to remember that because every individual with autism is different, not everyone responds well to the same treatments. Be sure to research before you decide what you feel is best for your child. There are lots of helpful tools out there!
3:20
Comment From Sarah

Elizabeth, with our son we found a lot of websites that had picture and stuff. We put them around the house and our son picked up on some of the things and now even says some of those words.

3:21
Thanks so much for adding your insights! We love seeing the community help each other out!
3:21
Comment From Rebecca

My son is 3 and is somewhat verbal. He will ask for things at home but at school he doesn’t ask for things unless he sees the object/thing he wants. It is because of this and his lack of spontaneous language(at school) that they are suggesting we use PECS. We had stated at his IEP that we didn’t want him using this. Our concern is that he would become dependent on this. What is your opinion of PECS? Is it beneficial?

3:22
Hi Rebecca! It is important that your IEP team listens to your needs and what you feel is best for your son. We have recently released an IEP Guide that will help you ensure your son’s needs are being met. You know what is best for him, so it is important that you make sure the school and the IEP team are hearing you loud and clear!
3:23
Here is a book about PECS that was submitted to our Resource Library by a family who found it helpful:http://woodbinehouse.com/main.asp_Q_product_id_E_978-1-60613-015-5_A_.asp
3:24
Comment From elizabeth

thanks! I did order the booklet yesterday. thanks for the links and also your input, Sarah

3:24
Comment From Sarah

Rebecca, I am not an expert by any means but I do have an autistic son as well. Stick with your gut feelings. Make sure the IEP is following what you want! The schools sometimes try to do what THEY want and what’s easiest for them and they can’t! If you end up wanting to use the PECS later, you can then add it to his IEP. You know your child best!

3:29
Comment From Rebecca

Our wishes and concerns have not been heard . At the first IEP the school district told us that all they wee willing to ouffer our son was a place in their Autism preschool program. Eventhough the “school” where he had been presented a report saying that their team thought that it would be in his best interest to continue with his home therapy program. Where can we find Educational Advocates in our area that would help us free of charge. We are in Modesto, California.

3:29
Hi Rebecca. It is important to make sure your concerns are being heard. You are entitled to have your voice heard in all matters related to the IEP. Our Resource Guide contains a list of advocates from across the country. You can search the resource guide at www.autismspeaks.org/resource-guide
3:30
We don’t list them by fee but hopefully they will be able to help you. In addition, you might also want tos earch our Local Autism Organizations category. Those organizations may be better able to point you in the right direction in terms of an educational advocate.
3:31
Comment From Sarah

google advocates in your area. I know here in GA there are not any in our city, but nearby towns.

3:31
Comment From Rebecca

Thank you Sarah

3:38
Comment From Guest

My son’s teacher communicates via email with us (parents). That’s fine, however, the emails are sent to the stepmother at her work’s email address rather than to my son’s father. I’m concerned for my son’s privacy. The school’s position is that they send emails to whatever address is provided. Are there any laws which can protect information regarding my son in this particular situation? SPAN was unable to find any

3:39
Hi Guest, have you tried changing the contact email that your school has listed?
3:40
That seems strange that the only one they send to is your son’s stepmother’s work email. You should make sure to have your email listed on there too, as all parents need to be involved in these decisions.
3:47
Comment From Guest

I don’t know how to explain to kids at the park that my son has autism and i live in NYC do you have any suggestions.

3:48
Hi Guest. Disclosing your child’s autism diagnosis to other people can be tough sometimes. We have a great list of stories on our website for peers that help them to understand more about their friends or playmates who have autism.http://www.autismspeaks.org/family-services/resource-library/books#peers
3:49
Perhaps you could show them these fun picture books, or get ideas from the books on how to best share the diagnosis. All of these books have been submitted by families who have found them to be extremely helpful with peers.
3:52
Comment From Sarah

I have also had troubles explaing to other children why my son isnt “normal”. They don’t understand why he doesn’t want to play with them or why he doesn’t talk back. I always say “God made Cody different (like he does everyone) and Cody just doesn’t always like to play or talk to others. It doesn’t mean he doesnt like or love you, it just means he likes to have his own space. He sometimes prefers to play alone instead….

3:53
Thank you Sarah for your helpful responses. We love seeing families in our community helping each other out. Sometimes listening to people who have had similar experiences as your own is extremely helpful and comforting.
3:54
Our Facebook page is a great way to get conversations started with other families in our community.www.facebook.com/autismspeaks
3:56
Comment From Sarah

You’re welcome. Hopeful I can help other parents. I have had wonderful friends with simiar experiences that have helped me!

3:57
Well we’d like to thank everyone for stopping by today! Remember we are here every Wednesday at 3pm EDT and you can reach us at 888-AUTISM 2 (288-4762) or email us atfamilyservices@autismspeaks.org.

Autism and Environmental Health in China

November 9, 2011 1 comment

From left: Drs. Jinsong Zhang, Alycia Halladay, Jim Zhang, Alice Kau, Fenxi Ouyang and Xiaoddan Yu


Posted by Autism Speaks Director of Research for Environmental Science, Alycia Halladay, Ph.D.

To date, relatively few scientists are studying autism in China. Clearly the need there is great, for with its population of over a billion, we may be looking at millions of persons affected by autism. With this in mind, Autism Speaks partnered with China’s Fudan University to convene a meeting of leading international experts in autism and children’s health in Shanghai last week.

As part of this visit, I and development psychologist Alice Kau, Ph.D., of the National Institute for Child Health & Human Development, visited Xin Hua Hospital and its recently completed Shanghai Key Lab of Children’s Environmental Health. Both are affiliated Shanghai’s Jiao Tong University School of Medicine.

There we met the lab’s executive director, Jun Jim Zhang, MD, Ph.D., and his colleagues. In recent years, they have been studying how exposure to heavy metals such as mercury and lead affects child development. Environmental lead contamination, a problem largely minimized in the United States, remains a widespread problem in China, owing to unsafe disposal of lead products including waste from lead battery plants.

The Shanghai Key Lab’s affiliation with Xin Hua Hospital allows its scientists to collect blood samples at birth and throughout a child’s development. Their lab is also collecting information on intellectual function and other developmental behaviors. Among their projects is the Shanghai Birth Cohort, which will recruit 100,000 pregnant women from hospitals throughout Shanghai and follow their children throughout adolescence.

To date, the researchers at Shanghai’s Key Lab have been focusing their research on potential environmental causes of childhood asthma, sleep disorders and leukemia. Looking forward, they are keenly interested in expanding their research to include neurodevelopmental issues such as autism.

Thanks to our new collaboration, they will be participating in Autism Speaks Environmental Epidemiology of Autism Research Network. In doing so, they will be sharing their information with autism researchers in North America and elsewhere, even as they receive guidance on screening for autism spectrum disorder (ASD).

Given the unique physical, chemical and psychosocial environment in China, we believe that this collaboration can greatly advance our understanding of the environmental and genetic risk factors that contribute to the development of ASD. We look forward to working with this wonderful research team to help solve the autism puzzle in China, North America, and around the world.

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

October 21, 2011 41 comments


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

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

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

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

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

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

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

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

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

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

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

And thanks for the question. Please keep them coming.

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

September 30, 2011 34 comments

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

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

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

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

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

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

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

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

Family Services Office Hours – 09.28.11

September 29, 2011 6 comments

Office Hours easily connects families to a wide variety of autism-related resources, including Family Services Tool Kits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code.

Family Services Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.

The Office Hours sessions are staffed by ART coordinators who are specially trained to connect families affected by autism to resources.

2:47
Welcome to Family Services Office Hours! We are here today to answer any questions you might have and help connect you to resources. Let us know how we can help!
2:55
Comment From Kelly

Hi, I have a 9 year old son that I believe has aspergers. His current official diagnosis is ADHD but he has so many other symptoms. Cincinnati Children’s assessed him several years ago and told us that he was bi-polar. I’d really like to know someplace that I can take him for a full eval. Can you help?

2:56
Hi Kelly! The Asperger Syndrome/High Functioning Autism Tool Kit will be helpful to you. It contains lots of helpful information and resources!
2:58
In addition, the Cincinnati Children’s Hospital is now an Autism Treatment Network site. Here is the contact information: Cincinnati Children’s Hospital Medical Center (Cincinnati, OH)
Contact: Terry Mitchell
Phone: (513) 636-1665
terry.mitchell@cchmc.edu
2:58
Comment From renaye

I am having a difficult time finding a speech therapist for my grandson who is nonverbal .. none of them take medicaid and there is a waiting list for the one that does.. what do I do.. He is 11 non verbal and we want him to use tap to talk or some assisted device

2:59
Hi Renaye! We have a very extensive resource guide on our website that contains lots of speech therapists. You may want to try contacting others in your area to see if they take Medicaid.http://www.autismspeaks.org/resource-guide
3:00
If you’re not having any luck through Medicaid, you should also ask the school district for your grandson to be evaluated for his speech and language needs which can be included in the IEP guide. Check it out here! http://www.autismspeaks.org/what-autism/your-childs-rights
3:01
Comment From Kimberly Rossi

Hello I was looking to find out where I can get information to help a friend of mine a 26 year old male with autism information about dating. He has a belief that “normal” girls won’t date him because he has autism. He says that he wants to date “normal” girls not those with autism. I’m not sure how to help him he refuses to go to any local mixers that happen in the area. Any suggestions?

3:02
Hi Kimberly! We also have a Resource Library with lots of general resources. We have 2 different pages you may want to check out, our Asperger Syndrome page, as well as our Adults and Young Adults page. There are tons of helpful resources there.
3:02
Comment From renaye

we live in indiana,,, northwest part of the state

3:03
Hi Renaye, I still thiink you will want to call Cincinnati Children’s Hospital Medical Center (Cincinnati, OH), and ask if they know of an expert in your local comunity.
3:04
For everyone else out there, we have lots of different resources in our Resource Library that cover a wide range of topics, like toys and games, autism apps, magazines, books and much much more!
3:07
Comment From Guest

I looking for feeding therapy in Illinois south of Springfield.

3:08
Hi Guest! Thanks for joining us. I suggest you search our Resource Guide. We have a category for Diet/Nutrition in there. If that doesn’t help you, I would contact your pediatrician, he or she may have some recommendations for you.http://www.autismspeaks.org/resource-guide
3:09
Be sure to consult with your pediatrician, this is a medical issue that requires a team approach.
3:09
Comment From Jack Dawson

Hi There! I was wondering when the Family Support Tool Kits are being released? Your Tool Kits have SAVED my family!

3:11
Jack we’re SO happy to hear our Tool Kits have been helpful to you! That’s what we’re here for!
3:12
Hi Jack- Family Services relased A Granparent’s Guide to Autism last week. We will release Parents, Sibllings and Freinds in the next few weeks.The Tool Kits are specially designed to help with the emotional and support reactions to having a child diagnosised with autism.
3:13
All of the Family Services Too kits can be found at;
http://www.autismspeaks.org/family-services 
3:13
Comment From meta kane

I need a school for my son who has autism. My son has a photographic memory.

3:17
Hi Meta: You can look in our Resource guide for Private Schools. If you are interested in public school, that is something you will have to work with your IEP team in making an determination of public schools that are available.
http://www.autismspeaks.org/resource-guide 
3:17
Comment From Dana

I’m wondering if there is a Dallas-area toolkit for the Dental community? Or if there is a group specializing in the ASD population? My stepdaughter has Asperger’s Syndrome.

3:17
Hi Dana! We have a great Dental Tool Kit on our website. It has information and helpful tips for families AND dentists. It also has helpful videos. You can see our Dental guide here:http://www.autismspeaks.org/family-services/tool-kits/dental-tool-kit.
3:18
We also have dentists in our Resource Guide that specialize in treating individuals with special needs including autism. Click on your state, then the category Dentists and you can search by your zip code. I hope you find a great one!www.autismspeaks.org/family-services/resource-guide
3:19
Comment From Mari

I live in California and my son is a Jr. in high school. He has not been able to pass the Ca exit exam. What happens next? We would love for him graduate with a diploma and not a certficate.

3:21
Hi Mari- I am going to recommend you request a Transition Tool Kit – a special kit for families whose child are transitioning into adulthood. http://www.autismspeaks.org/family-services 
As far as your son not passing the exit exam, I would recommend you call an IEP meeting in order to specifically address this issue. Our IEP guideline will be a great resource to check out. http://www.autismspeaks.org/family-services 
3:22
Comment From Jennifer

My 4 year old was diagnosed with Autism and is in a special needs pre-k. I”m trying to find help with the state laws that are associated with Special Needs Classes. Regarding class sizes, full days/ half days…ect…

3:22
Hi Jennifer! We have lots of information about eduation laws in our IEP Guide. You can read our IEP Guide that was written by a professional team of lawyers on our Your Child’s Rights page:http://www.autismspeaks.org/what-autism/your-childs-rights. You can also search our Resource Guide for other preschools in your area. www.autismspeaks.org/resource-guide
3:22
Comment From Dana

Your IEP guide is invaluable! We did our first IEP last week, and knew how to advocate for our daughter with Aspergers. Thanks to your site, we were able to include both speech therapy *and* counseling in her IEP, as well as ensuring her caregivers had Autism certifications.

3:23
Thanks Dana! I’m so happy that was helpful to you and your family. We have gotten some great feedback!
3:24
Comment From Mari

Do you anything about a waiver in Ca?

3:25
HI Mari, you can check with your Regional Center. They should be helpful about how to obtain a MediCal waiver. Its great that you are investigating a waiver while your son is making his transition to Adulthood.
3:25
Comment From Catherine Ritter

My family needs a good counselor for helping us cope with our eleven year olds AS/OCD. It has been extremely difficult dealing with the anxiety meltdowns that turn violent and destructive. He has a good pshychologist already. Our eight and four year are having a hard time with their brothers behaviors. It is really bad and we are looking into temporary placement outside of our home for him. It is hard to find doctors who can counsel in relations to the spectrum. Any suggestions?

3:27
Hi Catherine. I suggest you look to you discuss this with your pediatrician to see if he/she can make a referral to a counselor. You can also search our Resource Guide for psychologists/other professionals in your area who may be able to help.www.autismspeaks.org/family-services/resource-guide. It is important to make sure this counselor has experience with autism. But those are 2 great places to start!
3:28
Keep an eye out for a Sibling Tool Kit we are working on that will come out in October. We also have books for Siblings in our Resource Library which you can see here:http://www.autismspeaks.org/family-services/resource-library/books#siblings
3:30
For those of you making comments about issues at school or education-related problems, definitely check out our IEP guide here http://www.autismspeaks.org/family-services/community-connections/back-to-school
3:30
Parent involvement is very important in the IEP process and your child’s education. Make sure you advocate for your child’s rights even though the process may be difficult!
3:31
Comment From Thereasa

My 6yo daughter was recently diagnosed with Aspergers. Do you have information that is easy to explain to my family so they understand what that means? They tend to be rather anti psychobabble and will not accept this diagnosis.

3:32
Hi Thereasa! First off, I suggest you order our Asperger Syndrome/High-Functionig Autism Tool Kit, which we send out for free to families of recently diagnosed children.http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:33
We have family tool kits coming out, but it is normal for different family members to respond differently to the diagnosis. It can take some people longer than others to accept it. I suggest you point families to our website www.autismspeaks.org/what-autismfor information. We’ve suggested that better understanding can lead to more support for you and your family.
3:33
Comment From Catherine Ritter

Our pediatrician does not know of one. I already spoke with him last week. ?? I feel so overwhelmed and stressed, because my family is struggling.

3:34
Catherine, I am so sorry to hear you are struggling. Feel free to call our Autism Response Team at 888-AUTISM2 or email us at familyservices@autismspeaks.org so we can help you.
3:35
It may help you to connect with other parents either through support groups or your child’s school. We don’t want you to feel alone. Sharing your feelings with others going through similar times can be extremely helpful.
3:35
Comment From Mari

Thank you soo much for all the help! Have a Wonderful Day!

3:35
Thanks Mari, we are so happy to help! Hope to see you back next week!
3:36
Comment From Willmom

We have noticed that our 4 year old ASD son is becoming much more stubborn. He is melting down with every no any suggestions?

3:37
Hello Willmom – I am glad you are asking tis question. Its important to understand and have a plan of action when children are having new behaviors.
3:39
You will want to work with a professional, preferably a behavior analyst who is an expert on understating behavior
3:40
http://www.autismspeaks.org/resource-guide 
Our resource guide has a catogory called ABA, take a look!
3:41
Comment From michelle

when our son was that age willmom, we found previewing situations that would have no answers helped. such as we are going to the grocery and there will be things that I am going to say no to. you can get 1 thing, if you do not melt down. (of course all of this is in 4 yr old language) it helped some. didn’t get rid of all them..still had some store meltdowns

3:42
Thank you Michelle! It is so nice to see moms and other parents talking to each other and sharing stories. That is one of the best ways to get support, by sharing information with others who may be going through similar experiences. As many of you know, there are constant chats happening on our Facebook page and lots of parents have been able to connect and help each other!
3:43
Comment From Willmom

Also, our 4 year old son (ASD) is having a very hard time with potty training. Any suggestions?

3:43
Comment From Willmom

Thanks for suggestions

3:43
Comment From Willmom

Michelle, Thanks for reaching out!

3:44
Hi Willmom. There are 2 books that have been submitted to our Resource Library that have been helpful to families who are having difficulty with potty training. Here are the 2 links:
3:44
Comment From Jeni

Willmom – the Book Love and Logic help my family tremendously in dealing with my son’s tantrums when he was your son’s age. We also had a 1:1 ABA therapist that would go to the store with us and help guide me through the situation.

3:45
The Autism Treatment Network is working on a toilet training tool kit that they hope to have out soon. So keep checking back to our Family Services page for its release date!www.autismspeaks.org/family-services
3:47
Comment From Ashley

I was just wondering if there has been any link in genetic disorders and autism? I’m asking because I have two boys who have mutated “X” chromosomes, and as a result they have “symptoms of autism” they cannot say for sure that’s what it is, but that’s what everyone thinks it is. It was passed on to them through me (I have the exact same genetic make-up) and I am afraid my daughter will have to too (already had her tested, just waiting for the test results). Thanks for your time!

3:48
Hi Ashley! That is a great question, but I’m sure you would get a better answer from our Science team. You may want to check out Alycia Halladay’s live chat on siblings and genetics here:http://blog.autismspeaks.org/2011/08/16/increased-risk-live-chat/
3:49
Our science team would be happy to answer your questions atscienc@autismspeaks.org. They are very helpful!
3:50
or you can try research@autismspeaks.org for more specific research-related questions.
3:51
Comment From Gayle

My grandson lives in NC and has been diagnosed as being on the autism spectrum, adhd and I’m not sure of anything else. He takes medications that are costly and also sees a psychologist for dealing with anger issues. He is 7 years old and does well in school and most of his meltdowns are at home. His parents are separated and my daughter is the sole source of financial support. Are you aware of any no- or low-cost services in NC to assist with his medical costs? My daughter has health insurance but the psychologist specializing in children with autism is out of network and the insurance pays very little. My daughter has to pay more than $135/week for the therapy session and his meds are not in the range of what she can afford. Thank you for any assistance you can provide.

3:53
Hi Gayle: You are correct to investigate financial recourses for families. Is your grandson receiving a Home and Community Based waiver? If not, this is the first step you want to take.
3:55
There are so many stressors that family’s face, and financial issues are one of the primary ones that we see in families of children with special needs. There are potential sources of aid…. many of them depend on the state in which you’re living. Many of the services in some of the states are provided for through state agencies.
Through medical insurance if you have a willing physician, you can sometimes get funded for ancillary services that might be covered by your own insurance policy, or through Medicaid, especially if your child has other medical diagnoses such as seizures, GI problems, or special dietary needs. So my recommendation is to mine the services available in your community for funding, and don’t forget about medical insurance. Through medical insurance if you have a willing physician, you can sometimes get funded for ancillary services that might be covered by your own insurance policy, or through Medicaid, especially if your child has other medical diagnoses such as seizures, GI problems, or special dietary needs. Once you know where all your sources of funding might be, then take a critical look at your treatment plan that is required for your child, and see how each element might be covered by each of these resources to put together the most robust treatment plan for your child possible.
3:56
Comment From Guest

hi, i have an 8 year old boy, who has asd and adhd. We have just had our 6 year old duaghter accepted to be screened for autism. shes very intellegent and we feel shows signs of adhd and ocd too. she saves up all her anger, and behaviours for us at home, and we are told, does as she is asked in school! soo frustrating! ive read alot about high functioning girls disgusing their behaviours etc in school, then letting all come out at home.

3:58
Hi guest! This is a very common problem reported by parents. We recommend that there by close communication between you and the teacher so you can learn about what the school is doing to get the success they have. Communication is everything when trying to raise a child who may have autism. Remember, this won’t be easy because the school environment is so structured, but it does help to have this information so you can learn from their success.
3:58
These issues should also be brought up in the IEP team meeting. The teachers/school professionals should have lots of information for you. It is great when teachers and parents are on the same page.
3:59
Thank you everyone for joining us today!! We weren’t able to answer everyone’s questions but I hope all of the participants learned a lot from the questions that we did answer. As always, feel free to call our ART team with questions at 888-AUTISM2. See you next week!!

A Message from our Chief Science Officer

September 6, 2011 4 comments

Dear all,
I hope you enjoy our report on Science Department Monthly Highlights, focusing on major scientific advances and new grants funded by Autism Speaks, as well as the science staff’s media appearances and national/international meetings.  Given the size and scope of our science department, we aren’t attempting a comprehensive report here. If you are interesting in knowing more about activities such as tissue donations, participation in clinical trials, and our research networks (e.g. Baby Sibs Research Consortium), please contact me and our science communications staff at gotquestions@autismspeaks.org.  Enjoy! 

Best wishes,  Geri

  The dog days of August were anything but quiet for the science department. Highlights included the release of the first major report of the Autism Speaks Baby Siblings Research Consortium. The world learned that autism recurs in families at a much higher rate than previously estimated. For perspective and guidance, the national media turned to our director of research for environmental sciences, Alycia Halladay, PhD. Over the course of 24 hours, Alycia made appearances on CNN, MSNBC, and NPR’s “All Things Considered;” was interviewed by reporters for numerous major papers, news services, and magazines; and even found time to answer parents’ questions via live webchat (transcript here)—the first of an ongoing schedule of live chats to be hosted by science department leadership. Geri Dawson, PhD, our chief science officer, wrote a blog that focused on what the new findings mean for parents.

The science department also hosted a two-day Autism and Immunology Think Tank at the New York City office, with some of the nation’s leading thought-leaders in immunology and inflammatory diseases lending fresh insights to aid our planning of research exploring the immune system’s role in autism spectrum disorders. Glenn Rall, PhD, Associate Professor, Fox Chase Cancer Center and member of Autism Speaks’ Scientific Advisory Committee, and Alycia organized and led the meeting which was attended by senior science staff and experts who study the role of the immune system and inflammation in multiple sclerosis, Parkinson’s Disease, Alzheimer’s Disease, Multiple Sclerosis, inflammatory bowel diseases, and brain development.

Here, then, is the science department’s abbreviated rundown of August highlights:

Major scientific publications published this month supported with Autism Speaks funds and resources
* Recurrence Risk for Autism Spectrum Disorders: A Baby Siblings Research Consortium Study. Ozonoff S, Young GS, Carter A, et al. Pediatrics. 2011 Aug 15. [Epub ahead of print]
* Coming closer to describing the variable onset patterns in autism. Dawson G. J Am Acad Child Adolesc Psychiatry. 2011 Aug; 50(8):744-6.
* Mortality in individuals with autism, with and without epilepsy. Pickett J, Xiu E, Tuchman R, Dawson G, Lajonchere C. J Child Neurol. 2011 Aug;26(8):932-9.

Autism Speaks science staff in the national media
* Alycia gave perspective and guidance related to the results of the Baby Siblings study in The New York Times, Associated Press, USA Today, CNN Health, Time, Healthday, Huffington Post and WebMD; and made related appearances on CNN, MSNBC, and NPR’s “All Things Considered.”
* VP of Scientific Affairs Andy Shih was interviewed by the Philadelphia Inquirer, Parents Express and Education Week about Hacking Autism.
* Alycia was interviewed by Fit Pregnancy about studies on prenatal and early post natal risk factors. She was also interviewed by About.com regarding proposed changes in autism-related entries of next year’s much-anticipated DSM-5 (Diagnostic and Statistical Manual of Mental Disorders, fifth edition).
* Andy and Michael Rosanoff, associate director of public health research, were interviewed by Newsweek for a story about the Minnesota Somali prevalence study.
* Geri was interviewed by Parents magazine for a story about early screening and early intervention.
* VP of Translational Research Robert Ring was interviewed by Discover magazine for a story on the use of mice models in autism research.
* Geri was interviewed by the prestigious journal Lancet regarding autism clusters in California.
* Andy was interviewed by CBS 60 Minutes on innovative autism technology.
* Geri and Simon were interviewed by ABC News on the use of avatars in autism treatment.
* Autism Speaks Global Autism Public Health Initiative continued to generate world headlines, including  this Wall St Journal interview, around its Conference on Autism Spectrum Disorders and Developmental Disabilities in Bangladesh and South Asia, which resulted in the adoption of the “Dhaka Declaration” presented to the United Nations.


Science webchats
* On August 15th, the science department hosted its first live webchat, with Alycia fielding questions related to the widely covered release of the Baby Siblings Research Consortium’s findings of unexpectedly high rates of autism recurrence in families. Nearly 1,000 live viewers joined the chat and submitted 299 questions and comments. This is the first of an ongoing series of live web chats by senior science staff.

Science leadership at national and international meetings

* Geri, Andy, Rob, Michael, and VP of Scientific Review Anita Miller Sostek attended the treatment grant review meeting in San Francisco, Aug 1-2.  86 applications focusing on developing and evaluating new biomedical and behavioral treatments were reviewed by a panel of scientific experts and stakeholders.  Ann Gibbons, executive director, National Capital Area, offered her expertise as a consumer reviewer on the panel.
* Michael attended the World Congress of Epidemiology, in Edinburgh, Scotland, Aug 7-11. This year’s theme was “Changing populations, changing diseases: Epidemiology for Tomorrow’s World,” and the International Clinical Epidemiology Network Team, which Autism Speaks co-funds, presented on an array of research efforts. In addition, Danish researchers presented data on the increased risk for autism in children with low birth weight and other birth-related conditions.
* Geri and Alycia hosted an Autism and Immunology Think Tank, Aug 22-23, in NYC (described above).
*The Autism Treatment Network leadership held its semi-annual planning meeting in the NYC offices Aug 23-24, with Geri, Clara, Rob, Dr. Dan Coury, Medical Director, ATN, Jim Perrin, MD, Director, Clinical Coordinating Center, ATN, and Nancy Jones attending.
* The science department senior leadership and Mark Roithmayr held a strategic planning meeting with members of its scientific advisory committee in the NYC offices, Aug 24.  Among the advisors attending this meeting were Joe Coyle, MD, Chair, department of psychiatry, Harvard Medical School, Gary Goldstein, MD, president, Kennedy Krieger Institute, Steve Scherer, PhD, director, Centre for Applied Genomics, University of Toronto, and Roberto Tuchman, MD, associate professor of neurology, Miami Children’s Hospital.

*On Sunday, August 28th, Geri Dawson presented at the Triennial Conference of the Royal Arch Masons, a group that makes a substantial annual donation to support the work of the Toddler Treatment Network.

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

September 2, 2011 49 comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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