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Posts Tagged ‘Dr. Geri Dawson’

Military Families Tell Their Stories at Congressional Briefing

January 31, 2012 12 comments

Military families finally got their say before Congress today about the injustice of losing autism benefits for their children when they retire, even when due to being wounded in action. More than 100 members of the military and their supporters jammed into a Capitol Hill briefing today to talk about the special difficulties military families face caring for children with autism.

Hosted by Sen. Kirsten Gillibrand of New York and Congressman John Larson of Connecticut, the briefing also provided military families an opportunity to explain how they lose autism benefits once they or their spouse leaves active duty because of the current operation of the military’s TRICARE insurance program. A bill now before Congress, the Caring for Military Kids with Autism Act (HR.2288), would right that wrong by assuring that members of the military, regardless of their duty status are covered

 

Stuart Spielman, senior policy advisor and counsel for Autism Speaks, said many of the challenges faced by military families “do not have simple solutions.  There are good and bad school districts for special education.  Moving from one place to another may mean going to the back of a waiting list for Medicaid or some other program.  With access to behavioral treatments like applied behavior analysis, however, there is something we can do right now,” he said, in urging support for HR.2288.

Military members and their spouses at the briefing spoke of the difficulties they face accessing care and sufficient treatments for their children while on active duty, and their fears of losing all autism benefits when they retire.

Rachel Kenyon, the wife of a Connecticut Army Reserve platoon sergeant, related how her husband learned that their daughter had been diagnosed with autism while he was on his second tour of duty in Afghanistan.

“‘What does that mean?’ he said. ‘Please. Please tell me that she isn’t going to fall down the deep dark hole of autism.’  But I had no answers for him. I had no hope to offer.”

Jeremy Hilton, a Navy veteran whose wife serves in the Air Force, explained how frequent redeployments  and being stationed in areas with few available providers frustrated their efforts to provide care for their daughter.

Karen Driscoll, the wife of a Marine Corps helicopter pilot with 27 years of service, questioned how members of the military can focus on their mission when worried about uncertain care for their children with autism back home. “Our family is in debt because of TRICARE limitations on ABA therapy,” she said. “We are struggling. And my husband is a Colonel.”

Geri Dawson, Ph.D., chief science officer for Autism Speaks, provided background about autism, the rapid rise in prevalence and the special challenges faced by military families. “Studies show that…families of children with autism experience high levels of stress. For military families, this is compounded by the stresses associated with their service. When one parent is on active duty, the other may be facing these responsibilities alone. When a parent returns from active duty, their families may have the additional challenges of a parent with service-related mental or physical health problems.”

Leading up the briefing, Autism Speaks reached out to the military community to submit their stories by video. You can watch these compelling stories below. In addition, many others posted their comments through Facebook or in reply to blogs.

“There is almost nothing more stressful than the combination of military life and a child with special needs,” said Melanie Pinto-Garcia.

Janice Allmann McGreevy, posted: “The government needs to understand that our heroes are not automatons. They are subject to emotions. They need to be supported, and that means knowing that their families are not fighting nonsensical battles here at home.”

You can help our brave members of the military. Ask your Member of Congress to support the Caring for Military Kids with Autism Act here. To learn more about military families and autism, visit the Autism Votes Military page here. Read more about this issue from the Huffington Post.


Ask your Member of Congress to support the Caring for Military Kids with Autism Act here. To learn more about military families and autism, visit the Autism Votes Military page here.

Transcript of ‘Genetics of Autism: What It Means for You’ Webchat with Geri Dawson, PhD and Steve Scherer, PhD

October 27, 2011 4 comments

On Thursday, October 27 our first “Office Hours” webchat was held with Autism Speaks Chief Science Officer Geri Dawson, PhD, and her guest host: University of Toronto’s Steve Scherer, PhD, a world pioneer in the discovery and understanding of the genes and genetic changes that predispose to autism. Drs. Dawson and Scherer welcomed questions about the emerging understanding of genetic predisposition to autism, related studies supported by Autism Speaks and how this research can lead to new therapies and insights of direct benefit to families and individuals affected by autism.

12:29
Hi, everyone! Thanks so much for joining us for this, our first live “Office Hours” with Autism Speaks Chief Science Officer Geri Dawson, PhD, a licensed clinical psychologist and a professor of psychiatry at the University of North Carolina, Chapel Hill. Dr. Dawson’s guest host today is University of Toronto’s Steve Scherer, PhD, a world pioneer in the discovery and understanding of the genes and genetic changes that predispose to autism. Drs. Dawson and Scherer welcome your questions about the emerging understanding of genetic predisposition to autism, related studies supported by Autism Speaks and how this research can lead to new therapies and insights of direct benefit to families and individuals affected by autism. They’ll be posting answers to as many of your questions as they can and regret that their fingers can’t fly fast enough to answer them all. 
12:32
Comment From cindy

what actually keeps my autistic son from speaking?

12:32
Hello Cindy. This is Dr. Dawson. There are many reasons why kids with autism have trouble developing language. Sometimes it just take time participating in treatment. Some children don’t speak until they are in elementary school. Others learn more quickly. It is important that you have your child evaluated by a speech-language pathologist who can help you understand why young child hasn’t learned to speak yet. There are many good devices, such as iPrompt that can help children who are not speaking communicate their needs and wishes.
12:34
Comment From Robin

Hi . My question is about autism and other genetic ic disorders. Is there a connection genetically between autism and say huntington’s disease?

12:35
Hello this is Dr. Steve Scherer. Thank you for your question. I have not heard of any definitive link between autism and Huntington disease. It is possible that these two conditions will occur in the same families just by chance. This may also be the case with autism and other disorders.
12:36
Comment From Mark S.

I have a friend with a three year-old boy who was recently diagnosed with Autism. Not sure of the specifics (speech, social interactions). Are there any helpful books or resources you would recommend to parents who barely know the first thing about Autism????

12:36
Hi Mark, This is Dr. Dawson. There are many resources on the Autism Speaks website, including information about what is autism, treatments available, and local resources. Your friend is fortunate to have someone who cares about helping. I am sure you will be a great source of emotional support for your friend. Here is the link: http://www.autismspeaks.org/family-services
12:37
Advance question from Theresa
Hello: My question is will my Nuro typical son carry a gene that can lead to his children having autism?
12:38
Hi, Theresa. Dr. Scherer, here. Yes this is possible, but unless there is a significant family history of autism the likelihood of this occurring would be near to population average.
12:40
Comment From Gwendolyn

Hi, in working with young autistic children (ages 18 months to 8 years), I have noticed frequently that many of the non-verbal kids have two very interesting things in common. First, while they will not speak, they have no problem singing to themselves and can remember every lyric to their favorite songs. Second, I have been amazed by the ability of the older kids (5-8) to spell and write things with a wonderful grasp of grammar, even though they do not speak. How might these things be explained?

12:40
Comment From nettie

is there a test that can be done to fine out if it is genetic or not?

12:40
Hello Gwendolyn, This is Dr. Dawson. People with autism can be gifted in many areas, including musical ability, and sometimes it is easier for a child to learn to sing before he learns to speak. In fact, singing is often used during therapy to promote speech and social interaction. Similarly, writing can sometimes be easier than speaking. This is because some kids with autism are able to process information in the visual modality easier than the auditory modality. One way or another, the important thing is to give kids a way of expressing themselves and relating to others.
12:41
Dr. Scherer here. There is a new technology called chromosome microarray analysis that allows detection of some genetic changes involved in autism. Recent research has shown that this technology can find genetic alterations in perhaps some 10% or so of individuals with autism. There are also some other single gene tests available. In a moment we will post a link that directs you to an article that can tell you more about the tests (it will be called GeneTests).
12:41
A highly referenced resource (GeneTests) for clinical geneticists/genetic counsellors:http://www.ncbi.nlm.nih.gov/books/NBK1442/
12:42
Advance question from KARA: How do we prevent this for the next generation? protect our grand children? I have 2 with Autism one High Funtioning and in College one that should be in 6th grade and is nonverbal and not potty trained-they are number2 and 4 of 4 boys, 1 & 3 are Nuero-typical! Please help us know how they can have a family with out anymore Autisms!
12:43
Hi Kara. Dr. Scherer, here. Your family would likely benefit from discussing the latest genetic results with a local clinical genetics/counselling group. You could also enroll in research programs. New chromosome analysis methods are allowing detection of copy number variants (CNVs) that will inform on these questions in some 10% of families with autism. Even newer DNA sequencing methods may further resolve things but these are very early days and the data is just now being looked at. … More from Dr. Dawson … 
12:43
from Dr. Dawson … 
Kara, our hope is that every child, whether that child has autism or not, is given the best chance for a meaningful productive and enjoyable life. The good news is that methods are being developed that can identify a child at risk for autism during infancy. Intervention can begin right away and lead to more positive outcomes. 
12:44
Comment From selma

ıs ıt hard to learn two language for them

12:44
Hi Selma, This is Dr. Dawson. There was a recent study published that showed that kids with autism who are exposed to two languages do not show slower development of language, as compared to those exposed to only one language. If a child is living in a bilingual home, they should be exposed to both so they can learn to communicate with their family members who speak different languages.
12:45
Comment From marie demachy fauth

I ordered a microarray analysis for my son who has autism, the microarray came back negative. At the same time I ordered genetic testings on several autism suspect genes, Shank3 gene and CNTNAP2 came back positive for genetic mutations. I wonder why the microarray analysis did not picked up these 2 genetic mutations?

12:46
Dr. Scherer’s response. Microarrays are a new technology that allows scanning of all of the DNA and genes in the genome. It will detect genetic alterations widely, but only if they are of a certain size (typically >500,000 chemical bases of DNA). DNA sequencing is a separate technology that typically looks at one gene at a time (eg. the SHANK3 or CNTNAP2 gene), but at a much higher resolution (1-1,000 chemical bases of DNA at a time). So in a way the techniques are complementary. Therefore, it would be expected that one technique would detect some changes while the other would find others.
12:47
Comment From Barb B.

Can you talk about research being done in the areas of immune disfunction and environmental causes which may lead to Autism. If a person is genetically predisposed can we avoid the things which may lead to Autism developing through early dietary and biomedical intervention? I feel very strongly that this is a path which needs so much more research

12:48
Hi Barb, This is Dr. Dawson. There is a great interest in understanding the role of the immune system and environmental factors in autism. Autism Speaks is funding a great deal of research in this area. To find out more, visit the science section of the Autism Speaks website and search under grants (link to come). We believe that autism is caused by a combination of genetic vulnerability and environmental risk factors, which can include prenatal factors (e.g. maternal infection) and postnatal factors (e.g. toxins, such as pesticides). We are very committed to funding research on these topics and hope to have more answers.
12:49
Here’s a link to our grant search:http://www.autismspeaks.org/science/grant-search/results
12:49
Comment From Christina

I’m pleased to “see” Dr. Scherer here! Wanted to let him know that my two sons, my husband, and I just gave blood samples last week, at Sick Kids, to participate in the Genetics for Autism study, with Dr. Roberts.

12:50
Very nice to hear from you. Families like yours and many others participation in research helps everyone. Ultimately, we need to work very closely with families like yours to decode the mystery of autism so hopefully we can provide answers to your questions. Dr. Roberts and my team will work hard studying your DNA! You will also get an invitation each year to our family research day where you will learn about the status of the research. Dr. Scherer.
12:52
Advance question from Felicia:
I have four children, two boys and two girls. My 9yr. old has asperger’s, my five year old is fine, my 4 yr. son is autistic functiong at an 18 mo. level and my 2 yr. old son is autistic functioning at 10 mo. level. Is it genetics that gave me so may autistic children and if so why did it skip one? My husband wants to try for a typicaly developing boy after the boys are older. I feel we should not if 75% of our kids are autistic. What are the odds we could have a non autistic child?
12:53
Hi Felicia. Dr. Scherer, here. Genes (genetics) seem to often be involved in autism but there effect is almost always not absolute. There are about a half-dozen genes known that if present in one copy instead of the typical two copies may lead to a form of autism. Sometimes it is a more debilitating form of autism and other times it is a more high-functioning form. The new genetic tests may have the most significant impact by facilitating (or highlighting) early detection, perhaps even before onset of symptoms. It is hoped that this early identification may assist in intervention. I think the question above may also be getting at the issue of why more boys have autism than girls. For some genes on the X-chromosome there is a relatively simple explanation, but for other genes the genetics are even more complex.
12:54
Comment From Christina

Could you discuss the frequent co-morbidity of autism and ADHD? Are some medications better than others to treat ADHD symptoms in a child with autism? Thanks.

12:54
Hi Christina, This is Dr. Dawson. Autism is associated with several medical conditions (“co-morbidities”) and ADHD is one of the most common co-morbidities. The treatment for ADHD for a child with autism can include medications as well as behavioral interventions that can help a child focus their attention. I suggest that you contact a physician with expertise in autism in your local community and ask the physician for help in making a decision about medication. Autism Speaks Autism Treatment Network recently published a tool kit that helps parents make a decision regarding whether they should try a medication to help with behaviors, such as ADHD. We will send a link in a minute to the toolkit.
12:55
Comment From Guest

My son has asperger’s, daughter has tourette’s and male family on DH’s side (including DH have motor tics and asperger tendencies). Is it a valid reason then for us to pursue donor sperm for any future children? Will there soon be a way to determine the genetic risks and probabilities? I don’t want to knowingly give any more of our kids neuro disease.

12:56
Hi, Dr. Scherer here: Different neuropsychiatric conditions are sometimes observed within families, as seems to be the case in your situation. If you haven’t already done so, you should discuss your situation with a clinical geneticist or genetic counsellor. There are now some genes identified for autism and other neurological conditions, but ultimately family history is very important and you should discuss this with your doctor and the genetic specialists. I would also refer you to the GeneTests document we posted earlier.
12:57
Comment From Dawn Ford

I have a question about diagnostic testing and autism. When my son was 2 years old he had a brain MRI and a microarray genetics test, both of which were normal. He is now 5 and since that time I have read several articles about abnormal brain MRIs and genetics tests in children with autism. I’m curious if it is considered normal for a child who clearly has autism (he also has a diagnosis of hyperlexia) to appear completely normal on these types of diagnostic tests.

12:58
Hi Dawn, This is Dr. Dawson. It is common to find that a child with autism shows no abnormalities in brain MRI and microarray genetics tests. These tests are not necessarily sensitive enough to detect the subtle genetic and brain changes that may be associated with autism. Your child’s skills in the area of reading may help him excel and communicate. I hope he is able to use these skills at school.
12:59
Comment From Guest

We have a 6yo daughter with pdd-nos and a 4yo “neurotypical” son. In contemplating the possibility of a third child, is there currently any testing we can have done to indicate whether we have a heightened chance of having another child affected by autism?

1:00
Hi 12:35 Guest. In the last few years there have been many advances in genetic analyses. Earlier, I mentioned the new chromosome microarray analysis (CMA) test. This is becoming a standard of care test in many countries and for a proportion of families with autism it can inform on relative risk. There is much information on the internet. You should do some research and talk to your doctors to see if they think it is appropriate. Much more genetic counseling information (including risk assessment) is given in the GeneTests document we linked to (it will be easier for you to read this than me trying to type out such a long answer!). Dr. Scherer.
1:03
Advance question from Lynelle: How will the new DSM V affect those of us whose kids are now diagnosed with Aspergers Syndrome and/or High Functioning Autism? Will our kids still be able to get the same service and therapies they now receive?
1:04
Hi Lynelle. Dr. Dawson here. The DSM V likely will combine autism, PDDNOS, and Asperger into one category called Autism Spectrum Disorders. We expect that this will actually help kids qualify for services because sometimes kids are denied unless they are diagnosed with autism. Your kids should be able to qualify for the same services they are receiving now.
1:05
Comment From Teresa

Sorry this question is not about genetic links, etc. If you want to disregard, it’s fine. Do you know anything about side effects of Risperdal to control behavior? My daughter has high-functioning autism and has been on R since last February. We are really concerned about this medication but nothing else was suggested except for Topomax which she also takes during the day to calm her down. Thanks!

1:05
Hi Thersa, This is Dr. Dawson. Risperdal is one of only a couple of medications that has been FDA approved for the treatment of “irritability” in individuals with autism. Irritability includes aggression, tantrums, and self-injury. Unfortunately, a side effect of Risperdal is weight gain, so a parent has to weigh the pros and cons. We posted earlier a link to a Tool Kit that helps parents make decisions about medications for their child. A recent study showed that medications such as Risperdal are more effective when combined with behavioral intervention. We are currently working toward developing drugs for autism that have fewer side effects.
1:06
Comment From Brie

When is genetic testing appropriate for a child suspected of autism or related developmental delays?

1:07
Dr. Scherer’s response. A major impact of the genetic testing will be if it can help to identify individuals with autism at the earliest possible time. This will then facilitate attempts for intervention treatments, which have maximal impact when started early. So, if there is a family history of autism the genetic tests (eg. chromosome microarray analysis) might be used early. Right now, most of the microarray analysis is occurring after their is some clinical indication of autism of developmental delay (or later). So it is being used mainly as a confirmatory test. As the information becomes better understood the tests will likely have an increasing impact. The American College of Medical Genetics, the Canadian College of Medical Genetics, and others have recently published medical papers describing when this type of testing is appropriate. You can find these documents in Pubmed. If you need help finding them I think we can direct you to the source.
1:09
Here’s the report. Downloadable freehttp://www.springerlink.com/content/b286184612181424/
1:10
Comment From Rebecca

Is there a link between vaccinations & autism?

1:10
Hi Rebecca, There have been many epidemiological studies that have examined the link between the MMR vaccine and a preservative used in vaccines (thimerosal) and autism, and no link has been found. Thus, we strongly encourage parents to vaccinate their children because we know that this can help ensure that the child doesn’t get serious infectious diseases. We are still exploring whether there may be rare instances in which a child with a specific medical or genetic background may have an adverse response to a vaccination that triggers the onset of autism symptoms.
1:12
Comment From Nancy

How can1 of my kids have austism but my other 2 are fine?

1:14
Hi 12:43 Nancy. Autism sometimes appears as ‘sporadic’ and in other instances as ‘familial’. We know the most about genes being involved, but environmental triggers could also be culprit. The other thing to consider is that autism favors males over females (~4:1). If I was a betting person I would guess your your child with autism is a boy. We’re just now learning the rules and the one common theme that emerges is complexity. Some of the newer genetic tests might help inform on autism appearing in other family members, but these are still rather rudimentary. We will post a link to a scientific paper Dr. Dawson and I co-authored that explains this more.
1:16
Hi Marie, This is Dr. Dawson. You are right that drugs are being developed that help restore the functioning of the synapse (connections bewteen neurons in the brain) in disorders such as Fragile X, in which autism is common. This is a very exciting and promising area of research and Autism Speaks is investing in studies in this area. It is possible that the same drugs that we hope will be helpful in Fragile X and other syndromic forms of autism will also be helpful for people with autism without syndromes. These studies and clinical trials are on-going. Be sure to subscribe to e-Speaks because we will keep you up to date on these studies that seek to develop medicines that can reduce core symptoms of autism.
1:17
You can subscribe to eSpeaks here! http://ow.ly/7b1dE
1:18
Advance question from Sheetal: Hi. What do you know about the genetics and chances involved regarding a neurotypical sibling of an autistic having a child with autism. Thanks Sheetal
1:19
Hi Sheetal. Dr. Scherer, here. Genetic counsellors have statistics they use for just such a question. Given the rapid advances in genetic research in autism there are now some known autism risk genes and in a proportion of families (~10%) there may be genetic information available that will help inform on this question.
1:19
Comment From Teresa
Hi :) Thanks for being here for us! My question: with so many children currently being diagnosed with autism – 1 in 110 – is it not equally important to research autism causes not only because of genetics but also caused by environmental issues?
1:20
Hi Teresa. I believe it is equally important to perform autism research into genetic and environmental causes of autism. To be honest, however, the genetic research (right now) is easier to do because we have the right technologies and there are endpoints in our experiments. We know precisely how much DNA and genes there are so we think genetic studies will be tractable. The environment on the other hand is much more complex. I think the majority of research will continue on the genetics side for the next five years, but then once we have done this work we will have a more solid basis to frame ‘environmental’ research questions on. This is my personal opinion, Dr. Scherer.
1:21
Comment From Donna

Is there any way to control my sons violent outbursts? He is constantly grabbing at peoples throats.

1:22
Hi Donna, This is Dr. Dawson. Many children with autism have challenging behaviors, such as violent outbursts. It is important to find out why the outbursts are occurring. Is your son frustrated, confused, bored, or trying to escape an unpleasant situation? A psychologist trained in “functional behavioral assessment” can help you determine the reason for the outbursts and then develop a behavioral problem to reduce these outbursts. These behavioral interventions are very effective. Sometimes medication can also be helpful. Another thing to consider is whether your son many have an underlying medical condition, such as GI distress or even a sleep problem, that is contributing to his outbursts. To find a psychologist in your area, visit our Resource Guide on the Autism Speaks website. We will send the link.
1:22
Here is a link to our Resource Guide:http://www.autismspeaks.org/resource-guide
1:24
Advance question from Tracy: Are there any studies going on right now? My oldest daughter was going to participate in a study, but did not qualify. However my younger daughter has been diagnosed twice for autism, non-verbal. Considered moderate to severe due to the lack of communication. now I cannot find any studies. I need to get her into a Developmental Pediatrician, but once I get the paper work in, it’s at least another 6-8 month wait to get in.
She does get help at her pre-school, and occasionally qualifies for SSI, but we do not make enough money to afford private at home therapy. Is there any help out there for her? She is an adorable, affectionate little girl. She makes great eye contact ever since her eye surgery for severe eye crossing. Since then it seems an entirely new world has opened up for her.
Communication is still slow going. Potty training is in progress, but slowly.
I guess I am just another parent in need of re-assurance and understanding that has lots of questions, and just wishes to find someone that might have some answers.
1:25
Dr. Dawson here. Dear Tracy, One of the best ways to find out about studies is to register on the Interactive Autism Network website (www.ian.org ). On this website, families are connected with researchers. I am sorry it has been so difficult to find services. It sounds like your daughter has many strengths. Have you taken a look at the Resource Guide on Autism Speaks’ website:http://www.autismspeaks.org/resource-guide ? I should list the services that are available in your area. Some services are covered by insurance, others are not. You may also find the IEP toolkit helpful: http://www.autismspeaks.org/family-services/tool-kits . We are working on a toilet training toolkit, so check back on the website later. 
1:26
Comment From Guest

I have one adult son (22) with early onset autism, an adult daughter who exhibits OCD traits and a son with non-verbal learning problems and some mild sensory issues. Am I reading you correctly – they can seek genetic counseling to help ascertain the risk of the younger two having a child with autism? Would my oldest son need to give a sample to determine the type of autism and if it’s genetic?

1:27
Dear 1:15 Guest. Your questions are bang on. I have answered in part some of them but I wanted to use this response to address a few thinks I may have missed. The genetic tests use either blood or saliva (usually blood) as the source of the DNA. While taking blood can cause some discomfort, that is all you have to do. Then the genetic testing occurs. To understand if there are genetic changes presented that may be ‘familial’ in nature you do have to get DNA from the parents and siblings (and sometimes extended family members). Some of the ‘autism’ genes that have been identified in the past few years (such as SHANK3, NRXN1 and other mentioned earlier) are also being observed to be altered in other disorders such as schizophrenia, OCD and ADHD. It is all very complex. I often say that the only simple thing in autism is that it is complex (both with respect to the clinical presentation and the genetics). The genetic counsellors will know more about assigning risk.
1:29
Comment From Janet

our daughter was diagnosed with PDDNOS at the age of 5.5. At that time, the psychologist was debating whether the diagnosis was appropriate and suggested that we have her retested in 3 to 4 years and that the diagnosis may change. She is very high functioning, with issues primarily being social. She is also very anxious. Is it at all common for a diagnosis in a young child to change or even disappear as they grow older?

1:29
Hi Janet, This is Dr. Dawson. ASD is diagnosed based on a set of behavioral symptoms. Overtime, those symptoms can change, either because of developmental changes or therapy. So, yes, the diagnosis can also change as the behavior changes. The important thing is to consider your child’s individual needs and symptoms. It sounds like the two areas that are challenging are social skills and anxiety. Behavioral interventions, especially Social Skills Training and Cognitive Behavioral Therapy, can be very helpful for higher functioning kids on the spectrum. These therapies can help a child learn to relate socially to other and feel less anxious. Medications can also help reduce anxiety symptoms. To find a clinician in your area, I suggest that you visit the Autism Speaks website and click on our Resource Guide. We sent the link earlier.
1:31
Comment From Guest

Will there be a way to tie the genetics of autism development with the risk of autoimmune disease development as being linked or possibly a genetic predisposition but then something triggers them and why someone with family history of autoimmune and or autism/neuro dysfunction seem to have a genetic link? IT seems like anything could be the trigger, stress, environment, viral, but there has to be some genetic underpinning as to why it can happen to those who later become afflicted. If the genetic predisposition is exposed and known, perhaps things could be done to prevent?

1:32
Great question. Without going on too long, there are an increasing number of research studies investigating this. It is an entirely plausible way to explain environment and genetic links. Dr. Scherer.
1:34
Comment From Brie

Thank you! I would love to have a link to those papers.

1:37
Advance question from Patricia: If a child with autism is making really good progress & is on ADHD meds, what additionally can be done to help irrational fears & anxiety that lead to anger? Meds for an 8 yr. old? If genetic predisposition-a child of alcoholic parents can avoid alcohol; what should an autistic person be taught to avoid? Thanks, Patricia
1:38
Dr. Dawson, here. Hi, Patricia. 
There is a treatment method called Cognitive Behavioral Therapy which has been shown to help children with autism who feel anxious do better. The child is taught strategies for coping with his or her fears before it leads to an emotional outburst. There are also medications that can specifically help with anxiety. Often, a combination of both behavioral therapy and medication is used. 
1:38
Advance question from Muhammad and Sabrina: Hi, My 6 1/2 years old son is second in 3 brothers , and elder and younger than him are 100 % normal kids but as he was growing elder his habits were not satisfactory all the times complains form teachers we were also known of all his habits then we consult a doctor a he prescribed us Ratline tab and call this as ADHA after a long treatment we haven’t seen any improvements after about 2 years of treatment we consult another doctor he prescribed us respedrol and called it as Autism.
1:39
Dr. Dawson, here. Hi Muhammad and Sabrina. Autism is frequently associated with attention difficulties (called ADHD) and medication can sometimes be helpful. I hope that your son is also receiving educational and behavioral therapies to help him succeed at home and school. To find out more about the different therapies that are available, you can visit our website. Seehttp://www.autismspeaks.org/family-services/tool-kits .
1:43
From Dr. Scherer: I have to get back to the laboratory now. I wanted to close by saying how important it is for families to get information from relevant and trusted websites (and other sources) such as Autism Speaks. The reason autism research has been so successful in the past decade is because the clinicians, scientists, funders and families are all working together. Many of my best ideas arise directly from listening to the questions the families are asking. This webinar was also a good learning experience for me today. Thank you. Dr. Steve Scherer. And from Dr. Dawson: Thanks, everyone, for such great questions. Forgive us for not being able to all of them. We’ll be posting a transcript of this webchat on the Autism Speaks blog atblog.autismspeaks.org.

SiriusXM to Broadcast “Doctor Radio Reports: The Future of Autism

September 30, 2011 1 comment

World-Class Experts and Parents Explore the Transition of Children on the Autism Spectrum into Adulthood

September 30, 10:00 am – 12:00 pm ET/Doctor Radio, SiriusXM channel 81

This week on SiriusXM’s Doctor Radio Reports, host/veteran journalist Perri Peltz and a panel of world-class doctors, experts and parents of affected children examine the leading concern of parents with children on the autism spectrum—what happens as the children get older and the parents aren’t there to assist them? Will they be able to get a job, support themselves and find the support they need? In addition, what happens when parents are no longer there to provide care?

Geraldine Dawson, PhD, Chief Science Officer, Autism Speaks, Research Professor in the Department of Psychiatry at the University of North Carolina at Chapel Hill,Peter Bell, Executive Vice President of Programs and Services, Autism Speaks, Lisa Goring, Vice President of Family Services, Autism Speaks, Melissa Nishawala, MD, Medical Director of the Autism Spectrum Disorders Clinical & Research Program at the NYU Child Study Center and Jerry Hulick, Senior Planner with The Washington Group/Mass Mutual’s Special Care Planning Team join Peltz for this two-hour special, offering advice/tips on transitioning teens with autism to adulthood, including:

-       how to find appropriate housing situations for your autistic child

-       how to find support for their medical, psychological and social needs

-       estate planning tips to cover the cost of long-term care

-       establishing trust funds, applying for disability, and assigning guardianship for care and financial security after you’re gone

-       the newest developments in diagnosing and treating autism spectrum disorders

-       the latest in new medications and medication research to treat core autism symptoms as well as associated issues

Listeners are encouraged to call 1-877-NYU-DOCS (I-877-698-3627) or email docs@siriusxm.com with their questions.

Doctor Radio Reports: The Future of Autism will replay October 1 at 6:00 pm and October 2 at 8:00 pm ET.  

A Surplus of Males

September 28, 2011 29 comments

This is a guest blog post from Autism Speaks Science Board member John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s and Be Different: Adventures of a Free-Range Aspergian.

I spent this Tuesday in Washington, reviewing autism research proposals.  I really enjoy that work, because it puts me among some of the best minds in autism science.   In the course of our discussions, an intriguing question arose.

We know autism is far more common in males, but the reason why remains elusive.  It’s one of those facts of autism that most people take for granted, and simply accept for what it is.  In earlier essays on this blog I have considered possible explanations, from Simon Baron Cohen’s theory that autism is “exaggerated maleness” to reasons why females might be undiagnosed and undetected.

All the explanations I have heard so far do not account for this interesting observation:

If the male/female ratio within a society is 50/50, any random group of families sould have a 50/50 distribution of sons and daughters. Some families would have one child, others would have three.  Some would have all sons and others two daughters and a son.  Taken together, we would expect the total of sons and daughters to be equal.

If we assemble a collection of families in which there is at least one autistic child, that distribution of sons and daughters is not 50/50.  It favors the males.  Any autism researcher who has worked with families knows that to be true, even in the absence of hard studies to quantify it.  Why?

All of us know families that have all sons or all daughters.  We don’t make anything more of that that we do tossing a coin and having it come up heads three times in a row.  Just chance, we say.  But when you identify a group of families with a trait like autism, and they all have more sons than daughters . . . suddenly it stops looking random and starts to seem the result of something else.

If this were a roll of the dice, you’d start to think the dice were loaded.

One explanation is that some parents have a son with autism and stop having children.  So the girls that might even the male/female ratio are never born.  I think that explanation may be true today, but what about the ages before modern birth control?

Critics might say that we don’t know how autism was distributed among the sexes a hundred years ago, and that’s true.  The autism diagnosis has only existed for sixty-some years.  Yet we do have strong anecdotal evidence.  Using that, some modern day people have “diagnosed” historical figures with autism based on what we know of them and their lives.  How many of those individuals are female? Almost none.

Those “post-mortem diagnoses” are certainly subject to challenge and I’m sure some are even wrong.  That said, they can’t all be wrong and the male-female ratio in the known historical record of autism remains strikingly tilted toward the male side.

Geri Dawson suggested another possible explanation for the male-female imbalance.  What if girl embryos are actually more susceptible to some factor implicated in autism, but in a different way?  The factor that produces autistic baby boys might result in unsuccessful pregnancies when the fetus is female.  The result – fewer baby girls with autism are born.

To the best of my knowledge, no one has studied pregnancies in families with autism.  All that has been studied are the resultant children.  We don’t know how many miscarriages may have preceded or followed the birth of an autistic boy.  The incidence of miscarriage in general has been studied and it would be interesting to know if families with autism deviate from the norms in that regard.

The son-daughter imbalance certainly ties in with the Baron-Cohen “maleness” theory.  If autism indeed an expression of excessively male genetic material, that imbalance might result in more males being born in those families.

I spoke to several scientists and it became clear that this is one of those obvious questions that has never really been answered.  There is the general belief that autism families contain more males, but we have no hard data to illustrate the difference.  We also don’t have any multi generational data, which could shed light on the heritability of the condition.

In my own family, I have one child, a son with Asperger’s.  My father had many Aspergian traits, but he died before anyone thought to explore that possibility.  He had a brother, and no sisters.   His father also had a brother and no sisters.  His grandfather had three brothers and a sister.  Is there a pattern there that relates to autism?  I really don’t know.

It would be very interesting to see a study that addressed this question.  Perhaps a grad student somewhere will read this, and bring a research proposal to our next review meeting . . . .

Stranger things have happened.

Increased Risk of Autism in Siblings LIVE Chat Transcript

August 16, 2011 9 comments

Autism Speaks’ Alycia Halladay, Ph.D., hosted a LIVE Facebook Chat 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 see our news item and a special commentary from Autism Speaks’ Chief Science Officer Geri Dawson, Ph.D.

4:11
Hello Everyone! Thanks for joining our chat!
4:12
Hi there. My name is Alycia Halladay, Director of Research for Environmental Sciences here at Autism Speaks. Autism Speaks funded the analysis released today, and we work very closely with the Baby Sibs Research Consortium, who collected the data and works with the families. I am happy to answer questions and excited to hear your thoughts.
4:12
New findings on risk of autism in siblings – What do they mean for parents? http://www.autismspeaks.org/what-autism/learn-signs
4:13
Experiencing technical difficulties.
4:13
please hang on
4:13
We received several questions throughout the day. We will start with this one question
4:13
FROM SHAMIMP: What is the definition of sibling in this research, was it children having the same set of parents, mother and father? What is the percent of ASD occurrence for step brother and step sisters where they have the same father or different mothers or same mother and different fathers?
4:13
In this study, siblings had the same mother and father. We don’t yet have the numbers for children with one parent or the other being different. In science, this is called a parent of origin effect, where the genetics can be tracked to one parent or the other. The BabySibs Research Consortium hopes to study this in the future.
4:15
Comment From Guest

I have a 4 year old on the spectrum I also have a 2 year old and a 2 month old should I have the other 2 checked and if so when

4:16
As soon as you suspect that something is wrong, you should have a pediatrician or other healthcare provider evaluate your child for developmental disorder. Symptoms of autism emerge as early as 6 months of age. Here are some helpful links.
4:17
Here is a link to an early screener that you can fill out and bring to your doctor.
4:20
FROM ANGEL: I was wondering if there have been studies on boy-girl preemie twins.
4:20
Yes, the rate of autism is higher in infants who are born prematurely, and the BabySibs Research Consortium is looking at prematurity as a risk factor for autism. Studies consistently show that boys have a higher risk of autism, up to four times higher than that of girls.
4:22
Comment From MaryAnn

Do we know of ways to decrease the risk in pregnancy for future siblings at all?

4:23
In addition to family history, there could be many nongenetic influences to the development of autism. We are currently investigating these. A study came out that showed that prenatal vitamin use protected against autism.
4:27
Comment From Guest

The new findings in the siblings study indicate that genetics play a more influenctial role in family autism. would this suggest that environmental factors are less of an influence in autism? We have a 5 yo with ASD and a 4 month old. If we are carrying the genetic markers for autism could we influence whether our youngest manifests autism by avoiding potential environmental factors?

4:28
This study did not look at nongenetic factors. But in fact many siblings do share nongenetic influences. If you already have a child with autism, you should tell obstetrician and follow their guidelines and advice about a healthy safe pregnancy.
4:30
Comment From Lyda

I have a spectrum son and a recently diagnosed daughter. Was research done on the level of autism in the sibling and what does this mean for my newborn son (3rd) child?

4:30
In this study, the level of functioning was monitored in the older sibling diagnosed with autism and it did not influence the outcome of the younger sibling. In other words, the level of function in the older child did not account for the risk of autism in the younger child.
4:33
Comment From Cynthia

Where environmental factors presented at all in this study? For instance one child was born in one state and the second child in another area?

4:34
These factors were not examined in this report. However, the BabySibs research consortium is studying prenatal and infant influences in addition to family history. Here’s a link to that study:www.earlistudy.org.
4:36
Comment From Christin

Is there anything we can do from a preventative stand point?

4:36
Autism Speaks is supporting research looking at very early intervention. It may be possible to stop the progression of autism or prevent some symptoms from developing. So knowing the early signs is important. Early diagnosis leads to early intervention. Here again is the link to early signs and an early diagnosis checklist.
4:40
Comment From Guest

i have a 4 year old boy. I am no longer with his father. the man that i am with now and i have talked about having a child of our own…a big part of me really wants to have a child with him, a bigger part is not wanting to for fear of having another autistic child….is there any way to know what the chances are of me having another autistic child. if only there was prenatal testing available for autism, that way parents can brace themselves

4:41
While it’s important to know that family history is a strong influence in the development of autism, there are other nongenetic factors. Prenatal testing is not going to provide an accurate diagnosis. We don’t know how genes interact with other influences. But knowing that your next child may be at higher risk enables you to look for signs early and seek intervention that can improve function or possibly prevent some symptoms.
4:43
Comment From Bonnie

Hello I am a mom to 2 boys with PDD-NOS. These new findings are right on. My question is how will this change anything regarding early intervention or early screening?

4:43
Bonnie, we urge parents who have a child with autism to make sure they’re vigilant in monitoring the development of their subsequent children and to advise their physicians to do so as well–and to listen to their parental concerns. We hope that by doing so, all children who show early warning signs of autism will be monitored just as closely.
4:44
Comment From dsaie

Have there been any studies pertaining to the likelyhood of a sibling of an autistic person having a child with autism?

4:44
We know that family history is a risk factor for autism. But we don’t know the rate in offspring of people with autism or the offspring of relatives of people with autism. So we don’t know these numbers, but it’s reasonable that they would be higher than the 1 in 110 risk for the general population.
4:47
Comment From Anna

My 5 year old son has autism. What are the chances of my 11 month old girl having it and what should i watch for?

4:48
According to this study, if an older child has autism the chances of a younger sister being diagnosed are 1 in 9. So you should learn the early warning signs of autism by clicking the link below and also check out the video glossary that has clips of young children both affected and not affected with autism. Here again are the links:
4:50
Comment From Mitch

Is there any way of telling which parent carries the gene. I am dating a women with a 16 year old autistic boy and we were wondering should we want to have a child ourselves.

4:51
In this study, siblings had the same mother and father. We don’t yet have the numbers for children with one parent or the other being different. In science, this is called a parent of origin effect, where the genetics can be tracked to one parent or the other. The BabySibs Research Consortium hopes to study this in the future.
4:52
Comment From Guest

Did the study show a difference if the older sibling with a ASD had regression autism, where they developed typically then regressed, versus autism where the child never developed typically? Would the percentages differ if regression was involved?

4:52
The study didn’t address regression specifically. The researchers did look at overall level of function in the older child and found that it did not change the risk of autism for the younger sibling.
4:56
Comment From JoHanna

Is there any reason for the boys over girls with autism that you are aware of?

4:56
Johanna, this is a great question. There are many theories on why more boys are diagnosed with autism than are girls. One has to do with the location of risk genes on the sex chromosome. Some genes are located on the X chromosome and the extra X chromosome in girls may be protective. There are other theories that girls have different thinking and feeling styles than boys and are less likely to show symptoms.
4:58
Comment From Guest

Is the rate for susbsquent children having autism based on your other child that is diagnosed with autism or spectrum disorders??

4:58
Another great question. Thanks. This publication looked at the rate of autism spectrum disorders in younger brothers and sisters of children on the spectrum. The spectrum includes Aspergers.
4:59
FROM KATIE: What we need a study of vaccinated and unvaccinated siblings.
4:59
These investigators are looking at a number of things that happen during pregnancy and infancy that may influence the development of autism. To learn more about this study, follow this link to the EARLY STUDY.
5:00
Comment From Cathy

Just wanted to share that my 3-year old son participated in a Baby Sibs Study (at Yale) and it was a very good experience. I encourage other autism parents to enroll in these types of studies. They are extremely important to us all.

5:01
Cathy, thank you for your participation and your vote of enthusiasm about participating in a BabySibs study. If you all want to learn more–and possibly participate–in a BabySib reseach study, here is a list of sites and contacts …
5:02
We have time for a couple more questions. Forgive us that we were not able to get to all of your great questions and feedback.
5:02
Here is a link to the EARLI Study mentioned earlier.http://www.earlistudy.org/
5:05
Comment From Guest

In the study was there any correlation between the rate of ASD with length between births, birth weight, or length of gestation?

5:05
This study did not look at those factors. However, these have been identified as risk factors in other studies. The BabySibs research group is planning additional studies to explore the connections further.
5:08
Comment From Guest

If there is a family history of ASD behaviors, not necessarily diagnosed, how can we determine the risks or likelihood that future children will develop ASD? Are there preventative steps these families can take? Genetic Testing? Environmental changes?

5:08
I want to emphasize that this study did not exclude the role of nongenetic factors. However, we know that family history plays a very strong role in the development of autism. As previously mentioned, it is likely that genetics and outside influences work together, rather than separately. Further studies are in the works.
5:09
Thank you everyone for participating. Thanks so much for staying on for the full hour. Please continue to post your comments to our science blog at www.blog.autismspeaks.org. We look forward to the next chat!

Screen All Children for Autism

June 28, 2011 5 comments

By Geri Dawson, Chief Science Officer, Autism Speaks

Last week, a paper was published in Pediatrics that argued against the routine screening for autism by pediatricians. Three investigators who are part of the Autism Speaks Baby Siblings Research Consortium and I submitted a letter to the editor in response to this paper, which has now been published.  The link to the original article and the letter are provided below.  Our letter provides a strong rationale and empirical evidence to support the American Academy of Pediatrics recommendations that all children be screened for autism at their 18 and 24 month checkups.

This exchange highlights the important role of the scientific research in directly influencing policy and clinical practice.  We were able to cite research, much of which was conducted by Autism Speaks Baby Siblings Research Consortium investigators, to counter the inaccurate statements by the authors of the Pediatrics paper.

Read the letter, Why it is important that screening for autism be provided in routine pediatric carehere. The original paper is available here.

IMFAR: Innovative Technology for Autism Tech Demo

June 16, 2011 2 comments

The Autism Speaks’ Innovative Technology for Autism (ITA) Initiative has awarded more than $400,000 in new research grants to develop innovative assistive, educational, therapeutic, and diagnostic technologies for persons with autism.

2011 saw a new approach for Autism Speaks’ Innovative Technology for Autism(ITA) Initiative with the running of a student design competition called Autism Connects. The design brief was pretty straight forward: to create technology design ideas for individuals with autism to better connect with the world around them, and to allow individuals who do not have autism to better understand and connect with those who do.

In this video, Alex Plank and the Wrong Planet crew interview the winners of the IMFAR tech demo competition.

What I Heard

The author of this post is Jess, who can be found at Diary of a MomThere she writes about life with her husband Luau* and their beautiful daughters – nine and-a-half year-old Katie*, an utterly fabulous typically a-typical ten-year-old, and eight-year-old, Brooke*, a loving, talented, hilarious second grader who has autism.
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Last Thursday evening, I attended a talk at Boston University with Dr. Geri Dawson, Chief Science Officer for Autism Speaks. What follows is the letter that I felt compelled to write to her after hearing her speak.

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Ed note: I have written before about Autism Speaks and why I have stuck with them through some difficult times. If you’re interested, please click –> HERE <– to read a post that I believe pretty well sums up my position.

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Geri,

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It was such a pleasure seeing you last  week . I’ve never been one to attend a science lecture – at least not on purpose. But of course, I do a lot of things these days I never thought I would. (Like saying, “Yes, we met atthe White House.“)
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Life has changed.
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So I actually thought I was looking forward to listening to you speak.
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Lady, I had no idea.
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You proved that night that Autism Speaks is not just speaking, but listening. You made me, as a parent feel like a partner. You made it abundantly clear that you have taken in what you’ve heard from the community and incorporated it into what you say, what you do, how you think, and where you spend your (our) time, energy and money.
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I heard it in the Vision Statement, newly reflective of the diversity of perspectives within our community. In words carefully chosen to recognize and embrace radically different – even opposing – views on cure and acceptance. In a driving theme that seeks to unify, not further divide.
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“A world in which suffering because of autism no longer exists.”
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Amen.
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I heard it as you espoused the values that drive your research. Urgency – above all urgency. “We CAN hurry science,” you said. Scientific Excellence ensured by rigorous standards and consistent and in-depth review.Families as partners. Above all, I heard it when you referred to the individuals affected by autism as True North – always the guide, always the driving force of all that we do.
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I heard it as you talked about dissemination – the need not just to research, but to execute. To share knowledge, best practices, and to MAKE INNOVATION IMMEDIATELY ACCESSIBLE TO THOSE WHO NEED IT NOW.
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I heard it as you talked with pride about ’buying careers’ – when you told us with obvious pride that while 85% of AS funded fellows were brand new to the field of autism research, 95% remained after the fellowship and 100% – every single one – credited the AS fellowship with the decision to devote their careers to autism research. I had to process that for a while. 85%.
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I heard it when you talked about the leverage of funding from grants. When you told us that federal funding, private grants and other sources added ten dollars to each dollar spent by AS on the first 107 grants seen to completion. Ten to one.
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I heard it when you said the words I use constantly – “There isn’t AN autism. There are autisms.” The place came this close to sounding like a Baptist revival as I nearly shouted “Amen, sister! Preach on!” from the audience.
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I heard it as you connected the dots that so many parents have been connecting without support when you said, “Autism is not just a brain disorder; it is a whole body disorder.” Did you see me nearly trembling in the audience? YES, I thought, YES.
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I heard it when you said, “Behavioral challenges can be due to underlying medical conditions.” I thought I knew how badly we all needed to hear that reflected back to us by those with the power to affect change. I underestimated the emotional impact of hearing it out loud. It turned out to be pretty intense. Validation can be like that I guess.
I heard it as you talked about sleep issues, seizures and epilepsy, GI disturbances, food sensitivities and depression and anxiety. I heard it as you said, “We are working on understanding the obvious connections between the gut and the brain.” and when you talked about the M.I.N.D Institute GI study which you funded recently to the tune of nearly $800,000.
I heard it when you talked about the need for comprehensive care. When you talked about the Autism Treatment Network’s (ATN) academic center model. I heard it as you talked about these centers of excellence combining specialties in neurology, pediatrics, psychiatry, GI, sleep, genetics, pain and immunology and the need to create so very many more. I heard it as I said under my breath, “Yes.”
I heard it as you talked about the need to investigate nutritional deficiencies, bone density issues, creatine deficiencies, iron deficiencies, oxidative stress, mitochondrial disorders and metabolic issues.
I heard it when you said that you’ve got Dr. Martha Herbert working on establishing working groups to study the biomedical interventions that parents have been begging scientists to research. Thank God.
I heard it when you talked about the high risk natal study following more than 2,000 infant siblings of children with autism, who are at higher genetic risk for developing the disorder. I heard it when you explained that the infants are followed from close to conception through early childhood, with researchers tracking and investigating EVERYTHING in their world, from maternal infections in pregnancy to vaccines to nutrition to environmental toxins. I heard it when you said that they are collecting dust samples from the homes and using new brain imaging technology to monitor development on a level never before possible.
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I heard it when I asked you if you are looking at the effects not just of individual vaccines, but of administering them in combination and you said, “I simply believe in good science. If the science has integrity, I’m open to investigating anything that will help us find answers.”
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I felt it as my breath caught in my throat and my eyes filled with tears when you talked about the mind-blowing progress being made with genetically altered mice and the very real differences being seen in their socialization, vocalization and repetitive behaviors after treatment. I knew it wasn’t just me as my dear friend Rachel broke down next to me.
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I heard it when you talked about innovation. About the potential being shown by early trials of drugs like Memantine and Arbaclofen. I heard it when you talked about the possible, relatively near-term tractability of single-gene and possibly even multiple-gene mutations.
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I heard it in everything you said that night.
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It was the sound of US – of OUR stake in this, OUR community, OUR words, OUR HOPE.
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On Friday morning, my husband, Luau wrote the following on his blog. He typically writes about running, which doesn’t tend to overlap much with autism. But on Friday, because of you, it did.
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I need to share his words with you. I need you to know how much this matters. To our precious children, of course, above all. But also to US – to their mothers and fathers, their siblings, their grandparents, their aunts, their uncles, their cousins, and, if they’re lucky enough to have them, their friends.
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Just like funding, for every one of our children there are ten more whose fate is tied to the first. And a parent whose heart is leveraged to their (and your) progress ten times over.
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***
Quicksand And A Rope from Luau’s blog, Run Luau Run 

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I am running – pounding the treadmill.

My demeanor is calm, almost stoic, but I am sinking.

Sweat is dripping out of every single pore of my body. I am drenched. The display of the treadmill is spattered.

I’m waiting…waiting for the endorphins to kick in; waiting for the wave of “feel good” to wash over me and wash away the troubles of the day, the 1000 paper cuts that are threatening to bleed me out. I wait, and when I feel like I’ve waited long enough, I double-down and pick up the pace. The sweat continues to pour out of me, now like a leaky bucket losing water.

My breathing becomes labored and yet, I am still calm, stone-faced and waiting.

When the endorphins finally kick in, it is almost anti-climactic.

Yes, I feel good.

Yes, there is some release of tension.

But there is an underlying sense of dread, of sadness, of disappointment, of loneliness.

Something is not right. There is still a weight upon my chest, my shoulders, pressing down. The immediate world around me is no longer bending to my will. The destiny of me and my family no longer seems to be in my hands.

***

I think about Brooke’s future a lot. I know that any parent thinks about their child(ren)’s future, but when you have a child with special needs, like Brooke has, those concerns get multiplied. What roadblocks will autism throw up against her as an adult? as a teenager? as a tween? next week? It doesn’t seem to stop. A few weeks ago we had a scare that Brooke might be suffering from brain seizures (nearly 1/4 of kids on the autism spectrum will at some point suffer a seizure of some sort). She had been rolling her eyes into her head sometimes at a terrifying rate of 10 – 15 times per minute. In the end, after an EEG and an evaluation, it was determined that she was not suffering from seizures, but rather a motor tic associated with autism.

Not that I would have wanted it to be a brain seizure, but I thought, “Great, just one more thing that is going to make it difficult for her. Great!” Fortunately the eye rolling has subsided immensely. I now see her do it maybe 10 times in a day as opposed to 10 times in a minute.

That, along with a few other factors related to Brooke, have taken their toll I think. My sleep has suffered. My running has suffered. My motivation to do ANYTHING has suffered. I have been sinking slowly in a quicksand that has threatened to swallow me up.

***

But then last night I was thrown a rope.

Jess and I went to listen to a talk given my Autism Speaks Chief Science Officer Geri Dawson. She spoke on the state of science and research in the field of autism – where we were, where we are and where we just might be going in the not-so-distant future. Jess is much better at conveying events, so I will leave it to her to elaborate on the talk, but I will tell you this – we were sitting with Mrs. SGM, a military wife/mother of a little one with autism. At the end of the talk, Mrs. SGM went up to Dr. Dawson and told her that this was the first time she had been to something like this where she walked away with a sense of hope – a true sense of hope.

That is exactly how I felt.

It took those words for me to realize that my “hope” had been waning over the past few months. It was more of a general deterioration of my hope for the future. As the economy continues to struggle and town budgets get tighter, administrators eye more and more the funds spent on a child like Brooke. Long-term views are replaced by short-sighted ones. It’s happening everywhere and our community is no exception. So my hope for Brooke had taken a beating.

Until last night.

What she said will not impact the budget issues each town faces, but as I listened to Dr. Dawson speak, I was lifted by the possibility that big breakthroughs are right around the corner – that there may be a time, relatively soon, when Brooke’s autism won’t demand so much attention, so much manpower. My hope for a truly independent adult Brooke was reborn.

***

And with that, a certain amount of weight was lifted off of my chest. This morning I woke up just after 4AM and went for my run (10 miles, putting me over 1,000 miles for 2011!). There was the usual dragging my butt out of the comforts of my bed, but there wasn’t the sense of defeat and dread that has accompanied the moment of consciousness this past month or so.

Did Dr. Dawson’s talk resolve the issues we are currently dealing with now? No. Not even a little. BUT, as I look out over the horizon of time, I can see the storm clouds starting to break. The skies aren’t quite as dark or threatening and I think I see some sunshine coming through.

Thank you Dr. Dawson and Autism Speaks for inadvertently throwing me a rope and bringing back the sun.

Little darling, the smiles returning to the faces 
Little darling, it seems like years since it’s been here 
Here comes the sun, here comes the sun 
and I say it’s all right

-The Beatles
Thank you, Geri. Thank you for hearing us. Thank you for dedicating your formidable intellect and indefatigable spirit to our families. Thank you for pressing on in the face of so many challenges and believing that as overwhelming as this all is, change – real change – is possible. And thank you to all those who support and share the work that you do.
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Because in your work, there is HOPE.
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Sincerely,
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Jess
You can read this full entry on Diary of a Mom, here.

State of Autism Science Webinar and Podcast Series

April 1, 2011 1 comment

The Science Webinar and Podcast Series is a new service from Autism Speaks to help keep our community informed about the latest in autism research. Each month we will feature a leading expert to share with us the exciting progress being made and what it means for individuals and families affected by autism. Our goal is to help our community better understand all the new and exciting science being supported by Autism Speaks and other funders. We plan to be comprehensive in our coverage, including everything from genetics and environmental sciences to medical care and clinical trials. Occasionally, we will also feature special topics, like awareness and family support, that while not part of the Autism Speaks science program, are informed by our research and development efforts.

We are very pleased that our inaugural episode of the Autism Speaks Science Webinar and Podcast Series features Autism Speaks’ Chief Science Officer, Dr. Geri Dawson. Dr. Dawson will share with us two new exciting science initiatives at Autism Speaks aimed to deliver better medical care and develop novel treatments for our community.

Please find the webinar video below this post, or you may access the audio-only podcast here:
http://media.autismspeaks.org/webinars/2011-03-28+13.30+The+State+of+Autism+Science.mp3

5 Days Left Until Light It Up Blue

March 27, 2011 6 comments

The countdown is on to April 1st! World Autism Awareness Month is in reach and we are so excited to Light It Up Blue! Every day, leading up to the big day we’ll post highlights, a special interview and much more!


Who’s Lighting It Up Blue?

More than 500 buildings and communities are lighting it up blue! Christ the Redeemer in Rio de Janeiro, Brazil. Christ the Redeemer is considered the 2nd largest art deco statue and is among the New Seven Wonders of the World.
 

Visit www.lightitupblue.org to get pledge your support and get involved!

 


Community Spotlight 

Today’s virtual interview is with Vicki D. from Nebraska. 

Autism Speaks: What are you Lighting Up Blue?
Vicki D.:
The Nebraska State Capitol Building

AS: Why is this campaign important to you?
VD: My son has autism and I knew when he was diagnosed that I had to be his voice.  I want to help give awareness to the public that people with autism want the same as everyone; to have friends, to be included and have respect.

AS: Getting the State Capitol to light up is a huge accomplishment! How did you do it?
VD: I wrote the Governor of Nebraska and sent information about Light It Up Blue.  I asked him to not only do it for my son but for everyone in Nebraska touched by autism.

AS: What other buildings would you like to see lit up?
VD: The White House.

Are you lighting up blue too? Take this quick and easy survey to tell us how!

 

Dr. Geri Dawson Gives Us an Update!

In this blog post, Dr. Geri Dawson shares how the University of North Carolina will be celebrating World Autism Awareness Day. Several scientists at the University of North Carolina are currently conducting Autism Speaks-funded research on topics ranging from infant screening to animal models to clinical trials that are assessing new behavioral and medical treatments.

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