Archive

Archive for October, 2011

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.

Puzzle Pieces of Our Community Honorees

October 27, 2011 Leave a comment

By Daniela Foley

The inaugural Puzzle Pieces of Our Community event was held to honor those individuals and corporations who have supported the autism community. The main honoree and keynote speaker was Senator Marco Rubio who gave an incredible address about his experience with autism both politically and personally. He spoke about his involvement in the process of passing insurance reform here in Florida. He touched on his personal connection through members of his staff with children on the spectrum. I think the most impactful part of his address was his passion for wanting to take swift and bold action because of the staggering number of people in the United States living with autism in the United States today. He is resolute in his desire to ensure that we take notice as a nation as the disorder will impact us as a nation. (I’m not sure we could have written it better if we did his speech ourselves). He moved everyone in that room.

The other honorees included:

Baptist Health of South Florida for their South Miami Hospital Child Development Center which offers comprehensive diagnostic and early intervention services which is the greatest example of their commitment to helping families living with Autism.

CBS4 for excelling at creating awareness about autism research, disseminating important information to the community about services.

Greenburg Traurig for 10  years of support for the Miami Walk Now for Autism Speaks. Their role is instrumental in providing families with a day of sharing, support and hope.

Univision for being a social worker to the Spanish speaking minority that desperately needs vital information regarding services, resouces and treatments.

The evening was a success on all levels. The Senator confirmed his attendance only 4 weeks prior to the event but we sold enough tickets and tables to fill the room in that short time period. His keynote speech was both informative and inspiring! The silent and live auctions combined a significant portion of the fundraising effort and “Fund the Mission” was particularly successful raising more than $10,000 in a period of about 10 minutes. Most importantly, awareness was raised within the corporate community with individuals giving after the event and asking how to get involved with future events including the Walk. There is no greater reward than seeing how people are touched by the cause.

This event grossed over $100,000 which is a tremendous success for an inaugural event and I think a testament to the incredible efforts of a committee determined to reach our goals. None of which is possible without the fearless leadership of Lula Folgosa. It is her selfless giving of time, energy and love that we were able to have this event and lay such a strong foundation for the future of events like this here in Miami.

This slideshow requires JavaScript.

Autism in the News – 10.27.11

October 27, 2011 2 comments

UPDATE: Search for autistic boy seeks more volunteers for Thursday (Richmond Times-Dispatch)
A total of 940 volunteers helped authorities conduct 74 search missions so far today but 9-year-old Robert Wood Jr. still hasn’t been found. Read more.

Symposium Addresses Autism Treatment, Advocacy (Pearl River, N.Y.)
The speakers and vendors at the 6th Annual Rockland County Autism Symposium Wednesday at the Pearl River Hilton focused on diagnosis and treatment of the condition and methods of helping people with autism deal with the world around them. Read more.

King Richard’s Family Fun Park will Host Haunted Trail to Benefit (Naples News)
The King Richard’s Family Fun Park is set to host the Hellbilly Manor Haunted Trail which will open on Friday, October 21 and expected to bring thrills and chills to shock all senses. Read more.

Families of Autistic Can Gain Contacts, Knowledge at Center’s Conference (Warren Patch)
The Comprehensive Autism Medical Assessment and Treatment Center, at 266 King George Road in Warren, will host an event aimed at helping to provide a chance for local families with autistic members to meet and share experiences. Read more.

Community rallies for Autistic boy (Circleville Herald)
Luke Thompson is a 3-year-old child who has been diagnosed with autism. His family first noticed delays around the age of 18-24 months when Luke’s speech was not developing at the same rate as his peers. Luke also struggled with sensory issues such as being around noise or in large crowds of people. Read more.

Categories: Autism in the News Tags: ,

Family Services Office Hours – 10.26.11

October 27, 2011 5 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.

2:52
Hello: We are about to begin Family Services “Office Hours”, you can ask Family Services staff questions about resources or other questions about autism.
2:55
Comment From charleen

what types of resources for low income families are in the phoenix area?

2:56
Hi Charleen! Thank you for joining us today! We have a long list of resources in the Autism Speaks online Resource Guide. You can search for all different kinds of services in the Phoenix area.www.autismspeaks.org/resource-guide
2:56
You may want to contact local autism organizations, a category in our guide and see what they are aware of.
2:56
You also may want to check in with your Department of Developmental Disabilities to see if your family is eligible for Medicaid waivers.
2:57
Here is a link to the Division of Developmental Disabilities site in Arizona: https://www.azdes.gov/main.aspx?menu=96&id=2454
2:57
Comment From Maria Perez

Hello my son is 7 years old he was diagnosed with autism at 2 1/2 years old he does not speak but just some words but he does repeat alot of movies or cartoons he likes how can I get him to start talking more o saying what he needs o wants is there any programs o softwares that can teach him how to talk more and also how can I get him to stop repeating so much of what he sees thank you so much

3:00
Hi Maria thanks for joining us today. I would recommend that you get a Speech and Language evaluation through your son’s school district or a private evaluations.In order to know what your son’s speech and language needs are, its important to have data and information about his needs.
3:00
Comment From charleen

thank you, i’ve being trying to find something for my son, i’ve even asked his behavioral health palce, but they aren’t much help

3:00
Comment From charleen

thank you for all your help

3:00
Comment From Lisa

I just moved to Texas and I need to find a doctor for my daughter

3:01
Hi Lisa! I suggest you look through our online Resource Guide for doctors and all sorts of other professionals in your area in Texas.www.autismspeaks.org/resource-guide
3:01
Simply click on your state, and select one of our over 70 categories to search. You will be able to enter your zip code. We usually recommend people put it in a wide search radius so you really get to see what is out there.
3:02
Comment From Guest

Hi, my daughter is 7 years old and we are having a hard time bringing the therpy home.. She will eat different foods in food therpy but will not even look at the food at home.

3:02
Hi- Its important that the professional working with your daughter help you to generalize the interventions at home. It would be a good idea to ask the professional to do a home visit… if possible.
3:04
If a home visit isn’t possible, ask for a home intervention plan. These are some ideas to give you a start.
3:04
Comment From Nicki

My son is 4 will be 5 November 4th..I have a few questions actually My son has never been properly diagnosed as Autistic, but he has shown so many signs they said he tested at the “mentally retardation levels” When they said this I became very peeved! I told them what he does and they said I have no idea what I am talking about…My son repeats everything and anything,Don’t know his colors can’t count other than up to 5 and also hardly ever sleeps.They told me to give him Tylenol PM I have and I have also tried melatonin. Nothing is working I can’t get him to sleep at all….What is there I can do? I live in Kansas City Missouri? Some1 please help me he hasn’t slept since he was 2 yrs old other than here and there and he keeps humping everything!

3:05
Hi Nicki. I would recommend that you start with your pediatrician. He/she should be able to make a referral to a developmental pediatrician or a neurologist who can properly evaluate your son.
3:05
The earlier the diagnosis of autism, the better the outcome will be, so it is important that you find someone who will listen to your concerns and help you work through the difficult issues you are having.
3:06
You should also try searching our online Resource Guide for professionals in your area: www.autismspeaks.org/resource-guide
3:06
We have a page of tips and resources related to sleep that may help you as well: http://www.autismspeaks.org/family-services/health-and-wellness/sleep
3:07
Comment From Maria Perez

He is receiving speech therapy at school and also social skills on the weekend is there any computer softwares o pograms that can help me get him to start talking a little more

3:07
Maria, we have lots of great tools in our online Resource Library! One of them is called Online Learning Tools.http://www.autismspeaks.org/family-services/resource-library
3:08
We have TONS of great resources on that page including hundreds of books, some games, sensory products, online learning tools, websites for families, and much much more!
3:10
Comment From Natalie

My 9 y/o was just diagnosed with aspergers 2 weeks ago. What is the best thing to do for him being DX so late? I don’t even know where to begin.

3:10
Hi Natalie- we’ve created the Aspergers Syndrome/ High Functioning Autism Tool Kit. You can download the kit or call 888-288-4762 and order a kit to be delieverd to your home.
http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:13
Comment From Debbie

Hi… I’m Debbie and my son was diagnosed last Dec. Right now, we are looking for local groups so that he can have the opportunity to socialize and make friends. I’ve been trying to advocate for some kind of networking/supportive group for the parents at our school. My question is do I need to advocate somewhere else in the government in our city or can it be successfully done at the local school level?

3:13
Hi Debbie. We have lots of social skills programs, after school programs and recreational activities in our Resource Guidewww.autismspeaks.org/resource-guide
3:14
That is great you are advocating in your school for a support group. Support gruops can be so helpful to families of children with autism. I suggest you speak with other parents in the school who have children with autism or another developmental disability to get started. You will also likely meet lots of parents through these other programs who I’m sure would love to join a group of parents.
3:16
Comment From Guest

It is difficult to discipline my child. He crys incontrollably when I call him out on his bad behavior. Any suggestions?

3:16
Hi- Its important to understand the behavior, when it happens, how often and under what circumstances. Does the behavior occur at school?  I would recommend a Behavioral Assessment completed by a professional who understand autism. Your child’s teacher may be able to recommend soemone. You can also check our Resource Guide.
http://www.autismspeaks.org/resource-guide
3:17
Comment From Jenn

Hello, I happen to be an adult with asperger syndrome. I have an asociate degree & i’d want to work with preschool age kids on the autism spectrum.

3:18
Hi Jenn! That is great to hear you are interested in working with preschool age kids. We do not provide direct services here, however there are lots of preschools and recreation programs, social skills groups, etc. in our Resource Guide.www.autismspeaks.org/resource-guide
3:18
I suggest you reach out to those providers, and also to local autism organizations to find out what is out there. Best of luck to you!
3:18
Comment From Danielle

Hi =) I have a 3 year old little girl with aspergers. She tends to melt down every time you ask her to do anything and sometimes its just when you in speak to her in general – It can even be over something she really likes and it can be positive and she still melts down! Is this typical behavior???

3:20
HI Danielle -Autism Speaks has created an Aspergers Syndrome/ High Functioning Tool Kit. You can order a copy at 888-288-4762.
http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:22
it’s important to work with your daughter’s team to better understand this behavior. A behavioral assessment will give you a much better understanding of the function of the behavior.
3:22
Comment From Liz

I have not been able to go back to work the past year because I have been home with my 2 soon to be 3 year old who has been undergoing therapy for speach delays, developmental delay and sensory issues for the past 12 months. We did not get a diagnosis of Autism until about a month ago…my staying home has taken a huge tole on our family. Dad has had to work full time jobs to keep us afloat. Are their any resources or assistance programs for families like ours?

3:22
Hi Liz. We have a list of resources in our Resource Library for Families In Need which you can see at this link:http://www.autismspeaks.org/family-services/resource-library/families-need … I also suggest you contact local autism organizations which you can find in our Resource Guide who may know of more opportunities at a local level:www.autismspeaks.org/resource-guide.
3:23
Comment From Maria

Hi I have a question should we send our autistic son to preschool? He is high-function knows how to read, write, numbers from 1-100 and additions . I Don’t want him to go to preschool he is already on ABA program and I believe he is going to learn more with them than preschool. We had his IEP meeting and I feel pressure from the school staff.

3:26
Hi Maria – Its important to work with the IEP team on what’s best for your son. You should feel confortable expressing your concerns and also hearing why the team is recomedning pre-school. Pre-school is an opportunity for socializing that a child doesn’t get at home.
3:27
Comment From Jackie Gonzalez

First of all thank you so very much for being a reliable resource for families..

3:27
Comment From Gloria

Does anyone know of any sports organizations in the Dallas area for special needs kids? My son has Autism but loves sports even though he really can’t follow the rules he would love to play with kids his age, any suggestions?

3:27
Hi Gloria – I suggest you check out our Online Resource Guide which has lots of recreation opportunities and after school programs www.autismspeaks.org/resource-guide. We also have a Community Connections page on Recreation that has lots of resources as well http://www.autismspeaks.org/family-services/community-connections/have-some-fun-today-recreation-community-activities-clubs-and-
3:28
We also have a special page in the Health and Wellness section of our website called Fitness that provides lots of information and resources for sports for kids with autism:http://www.autismspeaks.org/family-services/health-and-wellness/fitness
3:28
Comment From Courtney

My son’s pediatrician tested him in office and told us he has high functioning autism. It all makes so much sense now, but we can’t have him seen by a psychologist until March of next year and I feel like I’m lost. My son is 8 and his violent outbursts are getting worse, what should I do until he is able to see someone?

3:30
hi Courtney, I would recommend you start by talking with your son’s teacher. He may need support during the school day, and they may want to complete assessmnets to identify his strengths and areas of needs.
3:31
Comment From Janna

I live in Colorado my work falls under a church plan for insurance which excludes them from ABA services through HIMAT I have been to the head of HR and Bren declined this year or next that try will be adding it as a benefit, how can I get help with ABA without insurance coverage?

3:32
Hi Janna. I’m sorry to hear you are having trouble with insurance coverage for therapy services. This is a major problem in the US. There are now 28 states who have mandated insurance coverage for services for kids and adults with autism. That is a huge goal of our advocacy efforts at Autism Speaks. You can check in on your state at www.autismvotes.org
3:32
You can also email our advocacy/government relations department for more specific help atgovrelations@autismspeaks.org.
3:33
Comment From Jackie Gonzalez

My question is…..any advice for a 4 year old who refuses to share? So much so that he becomes aggressive? Towards himself, his 2 year old brother, classmates and teachers?

3:35
hi Jackie- Its important to know under what circumstances the behavior occurs. Getting an understanding of the behavior is so important, and you may want to consider a behavioral assessment by a professional who is qualified and has worked with other kids with autism.
3:36
Your child’s IEP team can help to identify a Behavioral Analyst, a person who is trained to assess behavior and put a plan in place to change a behavior.
3:37
Comment From MariaH

Should I tell them that I want my son to go to a special Ed preschool ?

3:39
Hi Maria-I would suggest that you and a IEP team member visit a few pre-schools and make a decision based on what you observe and your child’s educational, and social needs.
3:41
Comment From Guest

My daughter is 22 months old. She is currently being evaluated for Autism by TEACCH in NC. She receives speech therapy and OT from the CDSA. The argument with giving her a diagnosis is that one she makes eye contact and two gesturing, she shakes her head yes and no but not always appropriate. She definitely has some sensory issues. She only has about 5 words. I also think she is doing some stimming, spinning, smacking herself in the head and repeating a sound over and over. Melt downs are huge for us in stores and resturants.

3:41
Hi Guest. That is great to hear that you are already working with therapists and professionals on your 22 month old daughters development. Early intervention is an extremely critical component of improvement and it sounds like you are right on track.
3:42
Every child with autism is very different, but the symptoms you are describing are often common in kids on the spectrum. I suggest you check out our Learn the Signs section of our website or view our Autism VIdeo Glossary which shows videos of kids with and without autism. You can check those out at the 2 links below:
3:42
Comment From Guest

Do you know of any organisatons that assist parents who are not able to afford the cost, in getting an ipad for non-verbal children with autism?

3:43
Hi Guest. The Autism Society recently put together a list of organizations that may help in funding iPads for children with autism. You can see the list at: http://www.autism-society.org/news/funding-for-ipads.html
3:44
We have also heard a lot about iTaalk http://itaalk.org/
3:45
Comment From Brandon

I have aspergers autism, I’m high functioning, is there any support groups in Portland, or. ?

3:45
Hi Brandon! Thank you for joining us today. I suggest you search our onlien Resource Guide for Support Groups in your area:www.autismspeaks.org/resource-guide
3:46
We have also heard about an online web support community called WrongPlanet.net http://www.wrongplanet.net/
3:47
We have 2 categories of websites on our Resource Library that may help you: Adults with Autism, and Asperger Syndromehttp://www.autismspeaks.org/family-services/resource-library/asperger-syndrome
3:47
Comment From Guest

Thank you.

3:47
Comment From Brandon

Thank you

3:47
We are happy to help. Thank you all for joining us today!
3:48
if you have additional questions you can call the Autism Response Team (ART), members are specially trained to connect families with information, resources and opportunities.Call us at 888-AUTISM 2 (288-4762) or email us at familyservices@autismspeaks.org.

In Their Own Words – The Big Dance

October 27, 2011 18 comments
It was a random phone conversation of no significance. She mentioned the big dance at a local boy’s school: the first big dance of the year.

I didn’t know about the dance. I listened to who was going, names of kids I knew and some, some only vaguely. “It’s a pretty big deal, it kicks off the social for the whole school year. You remember how it was about the first dance.”I smile to myself. Yes, I remember.

A couple of names were presented as not going. I suggest they are only freshman. Maybe they are just not emotionally ready. “No,” she responds. “They really should go. They meet other kids. Those social connections are important.”

Though Sam is the same age as most of the kids named, he isn’t going. He has never gone. But I don’t say those words out loud. The obvious reason is that he doesn’t go to the school and boys outside the school are not invited.

But that isn’t the only reason of course. Quite unexpectedly I feel a brief waive of nausea. I want to stop listening but I don’t. I realize I have stopped breathing for a moment.

It’s just a dance, I remind myself. Just a dance with teenage kids.

But neatly tucked away are my youthful memories of The First Dance. All the excitement; the emotional roller coaster ride of adolescence – the delight, the terror, crushes and heartbreak; the tentative steps into a more adult world of emotion. That right of passage that most of us experience.

I want Sam to experience that. But he likely can’t. He likely won’t. Why does this particular milestone catch me by surprise? I don’t want to care. But I do.

I keep the conversation moving and ask a mindless question. This time convincing myself, it’s just a dance. Just a dance.

As I hang up the phone and walk to the kitchen, Sam is playing music. We dance with abandon as we often do. And though it isn’t the same; or even close, I hear his laughter as we twirl. I find myself smiling and realize, it will do.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

2011 Autism Law Summit

October 26, 2011 3 comments

Hope and ideas are two things that always matter.

~ H. Jackson Brown, Jr.

by  Judith Ursitti, Director, State Government Affairs

The 6th Annual Autism Law Summit convened this past weekend at a new location — the University of Utah’s Susan J. Quinney School of Law, but with the same underlying theme — the passage, implementation and enforcement of meaningful autism insurance reform across the nation.  Lorri Unumb, Autism Speaks VP of State Government Affairs, facilitated the Summit, as she has for the past six years.

It’s worth noting that the Summit has evolved from an informal gathering of a handful of advocates passing around a hat to collect pizza money, to a capacity-level event, involving more than 100 registrants from 33 states. And once again, hope and ideas intersected with the blood, sweat and tears of parents, providers, lawyers, legislators and regulators, creating undeniable momentum in the effort to create a system where individuals diagnosed with an ASD can access coverage for the life-changing treatments they need.

A highlight of the event was the presentation of the 2011 “Speak Out”  award to Lou Melgarejo for his YouTube video, “Fixing” Autism, which he produced in honor of his daughter Bianca and the difficulties faced by families in gaining insurance coverage for needed therapies.

Special guests, Utah Representative Merlynn Newbold and Professor Bonnie Mitchell from the S.J. Quinney College of Law, welcomed attendees prior to Lorri Unumb’s presentation,” Autism Insurance Reform Across America.”  Honored as part of the presentation were the five states that passed legislation since the previous Summit:  Arkansas, Virginia, West Virginia, Rhode Island and California.

Other highlights of the jam-packed agenda included:

·     A “Politics 101” presentation by Missouri State Representative Jason Grill relating lessons learned from his experience in the Missouri legislature gaining passage of autism insurance reform

·     A panel discussion on “Convincing Self-Funded Companies to Add an Autism Benefit.”  The panel consisted of providers Bryan Davey, PhD, BCBA-D and Colleen Allen, PhD, CCC/SLP; employer representatives Doug Green of  DTE Energy and Jeremy Shane of HealthCentral; as well as advocate Karen Fessel, Dr. PH  (You can learn more about convincing your self-insured employer to add an autism benefit here.)

·     An analysis of the provider credentialing issue by panelists Misty Bloom, JD of the Behavior Analyst Certification Board; Andrea Chait, PhD, BCBA-D, NCSP, and Jill McLaury, MS BCBA

·     An update on litigation efforts against insurers provided by attorneys Dan Unumb, Ele Hamburger and Dave Honigman

·     A presentation on implementation issues by panelists Billy Edwards, MS, BCBA, of Texas; Mike Wasmer of Kansas, and Amy Weinstock of Massachusetts sharing their experiences implementing autism insurance laws in their respective states

·     A primer on developing successful grassroots advocacy at the state level to gain autism insurance reform by Shelley Hendrix, Autism Speaks, Director of Grassroots Development

·     A robust discussion of “Enforcement of Coverage” by panelists Adam Cole, JD, General Counsel, California Department of Insurance; Jacqueline Eckert, MedClaims Liaison; Dan Unumb JD; and Angela Nelson, Director of Consumer Affairs, and Melissa Palmer, Legislative Director, from the Missouri Department of Insurance

·     A mock legislative hearing on autism insurance reform, providing an opportunity for attendees to experience first-hand the challenges frequently experienced by advocates

·     Insights by the Autism Speaks Government Relations team specific to grassroots development, communications, policy, implementation and enforcement

As attendees dispersed Sunday morning, heading back home to different parts of the country, smiles and hugs of encouragement were shared by colleagues old and new.  Once again, the connection of hope and ideas had been sparked.  Truly, 2012 is destined to be another year of hard-fought progress in the effort to ensure access to autism insurance coverage, step by step, state by state, plan by plan, family by family.

******

Special thanks to our sponsors:  Utah Autism Coalition, Butterfly Effects, MedClaims Liaison and Autism Services Group.

Autism in the News – 10.26.11

October 26, 2011 2 comments

Autism Linked to Unusual Shapes in Lungs (WebMD)
Children born with a certain shape in their airways — the tubes that take air to the lungs — all have autism or autism spectrum disorder, according to a new study. Read more.

UPDATE: Search for missing autistic boy continues in Hanover (Doswell, Mass.)
The search for a 9-year-old autistic boy missing in Hanover County since Sunday continued into this morning without success. Read more.

Rat Study Ties Antidepressants to Autism-like Brain Abnormalities (Psych Central)
A new study shows that immature rats given a common antidepressant can exhibit brain abnormalities and behaviors characteristic of autism spectrum disorders. Read more.

Sewing bee fashions blankets for autistic children (Battle Creek Inquirer)
A sewing bee may not be what initially comes to mind when considering a source of medical charity, but that’s what was happening Tuesday in a common room at Battle Creek’s Chapel Hill United Methodist Church. Read more.

Annual autism fundraiser celebration will honor three community leaders (Sun Sentinel)
The “Fourth Annual Autumn Moonlight”, hosted by Specialty Automotive Treatments, 700 W. Sunrise Blvd., Fort Lauderdale and benefiting the University of Miami-Nova Southeastern University Center for Autism and Related Disabilities (UM-NSU CARD) will take place from 7 to 10 p.m. on Nov.18. “Autumn Moonlight” is an annual festive fundraising celebration designed to raise awareness of autism and support the programs, services and research initiatives of UM-NSU CARD. Read more.

Categories: Autism in the News Tags: ,

Live Webchat on the Genetics of Autism: What It Means for You

October 26, 2011 23 comments
Please join us for our first “Office Hours,” tomorrow, October 27, at 12:30pm EST, 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 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. We welcome your advance questions at ScienceChat@autismspeaks.org.

Stephen Scherer, PhD, director of the University of Toronto's McLaughlin Centre for Genomic Medicine

Categories: Science

Autism Speaks welcomes the 2011 Dennis Weatherstone Fellows

October 25, 2011 Leave a comment

On Monday, October 24th, Autism Speaks hosted its Third Annual Dennis Weatherstone Fellowship Luncheon at the Princeton Club of New York.  The 2011 & 2010 Fellows were joined by representatives of the Niarchos Foundation, and Lady Marion Weatherstone who welcomed the incoming class and congratulated their predecessors on their contributions in autism research.

The Dennis Weatherstone Memorial Predoctoral Fellowship Program was established with a generous gift from the Stavros Niarchos Foundation.  The Program seeks to encourage the most promising young talent in science to make autism research their chosen career.  Autism Speaks is pleased to present the third class of Weatherstone Fellows.

Sir Dennis Weatherstone’s distinguished career in the financial industry was highlighted by his service as Chairman of JP Morgan from 1980-90.  He later added the role of Chief Executive Officer, which he held until his retirement in 1994.  Sir Dennis was the first Chairman of the Stavros Niarchos Foundation.  Upon his passing in June 2008 the Foundation established the Weatherstone Predoctoral Fellowship Program at Autism Speaks to honor his commitment to discovering the causes and improve the lives of those affected by autism.

2011 Weatherstone Fellows with Lady Weatherstone

  • Cara Damiano, University of North Carolina, Chapel Hill
  • Jillian Filliter, Dalhousie University
  • Sean Johnston, University of Wisconsin, Madison
  • Rui Luo, University of California, Los Angeles
  • Frances Martinez-Pedraza, University of Massachusetts, Boston
  • Kristopher Nazor, The Scripps Research Institute
  • Nir Oksenberg, University of California, San Francisco
  • Allison Waiter, Michigan State University

Lou Melgarejo 2011 Speak Out Award Recipient

October 25, 2011 5 comments

Autism Speaks hosted its 6th Annual Autism Law Summit on October 20-21 in Salt Lake City, Utah attracting 100 parents, advocates, lawyers, legislators and lobbyists to discuss autism insurance reform through legislation and litigation.  This year’s summit was co-sponsored by the Utah Autism Coalition and the University of Utah S.J. Quinney College of Law.

At this year’s summit, Lou Melgarejo received the “Speak Out” award in recognition of  “Fixing” Autism, a video he produced in honor of his daughter Bianca. The “Speak Out” Award was created to recognized those who go above and beyond in raising awareness of autism to the public through the media.  As part of the award, Autism Speaks Co-founders Suzanne and Bob Wright will make a personal donation of $1000 to the Autism Speaks mission area of the recipient’s choice.  Watch the video and read Lou’s acceptance speech below.

“Fixing” Autism

Lou’s Acceptance Speech

“It is a real honor and a privilege to be here at the Annual Law Summit. Before I get started, I thought I should warn you that Representative Boehner has teased ME for crying too much.

This marks the second time that I have watched my “Fixing” Autism video in its entirety. It’s really tough for me to watch. I have, however, tried to read each and every comment, blog, status update, tweet about my video. The response has been overwhelming. It sounds as though I have shed as many tears reading the comments as my video has elicited from those that watched it.

As of today, “Fixing” Autism has over 93,000 views. As flattering as that is, it also makes me a touch sad. That number needs to be way higher. Those that are aware of the video and its message to end health care discrimination against people with autism spectrum disorder, and the disparity in funding are already converts. I am glad that they could take comfort from the video, but really they are not the ones that need to see my video. It is the kid that bullies a shy and awkward classmate, it’s the cranky old lady that yelled at my wife for having our daughter on a “leash”, it is the person that glares at you with a scowl because you can’t appear to control your kid, it is the family member who, when you tried to confide in them that your child was on the spectrum, they tried to tell you that your child would grow out of it… instead of just saying, “I’m so sorry. How can I help?”

The person I am trying to reach is me. Not the guy that is standing before you, but the guy that I was only 6 years ago. That guy is funny, liberal, sensitive, accepting of people with differences, but so caught up with the day-to-day minutiae of his own life that he can’t be bothered with charity work. “Everybody has a cause about something” I would say. I was so put off by everybody championing whatever disease, condition, country, animal, religion people were trying to raise money for that I started my own grassroots movement on Facebook… “The Cause Against Causes”. My first real advocacy.The goal of my movement was apathy… if you were up to it. What at first I thought was funny and tongue in cheek, now makes me sad and ashamed. I cringe when I look back at where I was.

What a shame that is took my own child becoming diagnosed with ASD for me to be motivated to become an advocate for a cause. But I don’t think that my story is an abnormal one. The vast majority of people championing a cause are doing so because somebody they know has been affected. These causes are personal. They mean something to people. It isn’t just about shaking others down for money.

So how do you get a guy like me to care about a cause if they are not affected? That is the question that runs through my mind pretty close to every waking minute of my day. How can I affect change? How do I make people see the injustice I see?

I know TV, and I know a little bit about story telling. So I have to use what I know. That is how the video came about. I have worked in the television industry for 18 years. But I can honestly tell you that of all the big events I have covered and shows I have directed, there isn’t one thing that I have done that comes  close to the pride I have for my “Fixing” Autism video. The fact that an organization that I believe so strongly in like Autism Speaks helped me to spread the message, and is honoring me today with this award means more to me than I could ever put into words.

Thank you Autism Speaks. Thanks to Marc Sirkin for his amazing support and reaching out to me on Twitter to tell me how much he believed in my message. Thank you to Mike Wasmer for your support and for letting me know that my story is not an uncommon one. It is good to know you are not alone. Thank you to the Wright family. Bob doesn’t know this, but in all my years in TV, the only other recognition I have received was from NBC when he was in charge. Most importantly I want to thank my family: Thanks to my parents for all of their support;to my beautiful wife Elsa for hanging in there on this ride, life can knock you down sometimes, but we have been fighting back and trying to not let it destroy our marriage. Thanks to my kids Sofie and Luis. They are the greatest siblings in the world and they fill my life with laughter every day. And to my beautiful Bianca… she is a priceless gift. In six short years, she has taught me more than my previous 34. I am a better person for her being in my life and I love her without condition.

In closing I just want to let you know that I am aware that I am preaching to the choir here, but the choir has a very important job. It is up to the choir to fill people’s ears up with music and often times to move people to join the congregation. Let’s make certain that when we leave here this weekend that we are making noise, not just to those that are already in our flock, but to the world in the hopes that our numbers will rise. Thank you.”

Follow

Get every new post delivered to your Inbox.

Join 1,048 other followers

%d bloggers like this: