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| Research Information (Volunteer), History key dates, and Story: Love for Son |
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| Written by AsPlanet.info - UPDATED 2009 | |||||||||||
| Aug 27, 2007 at 09:34 PM | |||||||||||
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Research Autism We are the only UK charity exclusively dedicated to research into interventions in autism. We commission, carry out and support high quality, independent research into new and existing health, education, social and other interventions. For example, we helped to fund the first UK-based research study into the effectiveness of early intensive behavioural intervention. And we have provided funding for studies into sleep problems, into bullying and into self-injury in children.You can find out more about our research on our website: http://www.researchautism.net/pages/research . . Theories of Autism, Asperger Syndrome .. Autism as mysteries as the Universe - Edge of Autism What next! for more / latest RESEARCH see link: . Unscientific! - http://www.unscientificamerica.com/ . . The Autism Research Centre (UK) has six major research programs: For more information click on research projects... . Perception and Cognition research projects... The ARC pioneered psychological research into autism spectrum conditions, developing experimental methods to study difficulties in empathy and strengths in systemizing and attention to detail. Methods used in this program include computerized testing, gaze-tracking, galvanic skin response (GSR), observational coding, and sensory threshold tests.
Screening and Diagnosis research projects... The ARC was the first to develop early screening methods to detect autism at 18 months of age, and test these at a population level, and has gone on to develop related instruments for screening of autism and Asperger Syndrome in childhood, adolescence, and adulthood.
Intervention research projects... The ARC has developed new educational software for teaching emotion recognition from age 4-adulthood (the Mindreading DVD), and a new children's animation for teaching this skill to preschool age children on the autistic spectrum (The Transporters DVD). Both of these have been carefully evaluated to measure their benefits in comparison to matched control groups. We are also evaluating other interventions that promote empathy by harnessing the strengths in systemizing, such as Lego Therapy
Hormones research projects...
Neuroscience research projects...
Genetics and Proteomics research projects... . "Thanks for getting in touch and congratulations on producing your own website. You can find pdfs of most of our publications on our website. There is a search facility so you should be able to findpapers on the topics you are specifically interested in. (www.autismresearchcentre.com). Sally Wheelwright Deputy Directo, r Autism Research Centre, Cambridge University, UK" . . . Autism & Asperger's Syndrome Services Survey Updated Oct.09 : http://asdsurveychch.ucoz.com/index/0-1 Study about Special Interests in AS, High Functioning Autism http://www.deakin.edu.au/psychology/research/specialinterestsinAS/ . .. Just thoughts! Because someone is a professional or has done some research it does not mean they have the answers, while I agree without research there would be no progress... it does concern me that because of so much press in this regards of late sometimes I feel many people for no real reason think there is some think wrong with us - not true. I am just differently neurological minded and have as much right to live and be my way, as you do yours... So until we know the cause/real fact, can we all try and at least treat autistic people with respect and not as experiments, every time I mention me and my older son are on the autism spectrum I get looked at and treated like a sub human! . I do feel it's important that we all know what is going on and of course some of this research will impact as much on none autistic people and other medical mysteries as us. So I have tried to put together what I see as some of the best research, to keep us all updated and to open discussion. Just like everything else I wish they would include us more, rather than think they know us from a survey! . I guess we all need to still remember, me included. That me or you ranting on, or chatting on the internet is not science. You can find real science here http://www.pubmed.gov. As still there is no evidences that vaccines, any component of vaccines or any vaccine schedule cause autism. Likewise, there is no science that establishes a correlation between gastric issues and autism. But Rett Syndrome is 100% genetic and is also a type of autism!. . When we can reduce the environmental factors to which the child is reacting, the normal developmental process re-engages and attempts to proceed normally. As long as you continue to control those factors to which your child reacts, the developmental process continues to advance. Having the genetic markers seems to mean a susceptibility (an extra level of sensitivity or intolerance). As far as I can tell, there is no genetic marker about sensitivity. those genetic markers simply indicate more sensitivity to something. . . . Disorder linked to high levels of testosterone in womb 12 January 2009 | The Guardian | Sarah Boseley Prenatal screening tests could follow ground-breaking research into 235 children . Hormone clue could lead to pre-natal screening for autism 13th January 2009 | by Jenny Hope | Mail online Related problems – autism spectrum disorders such as Asperger’s syndrome, also result in special teaching needs. Such disorders are thought to affect ... . Don't try to make us what we are no, cures/vaccines as much to do with me as you! . . . I feel people on the autistic spectrum are often disabled more by society than by their autism. A statement I feel worth repeating... Many of us have spent a life time not understand ourselves, let alone anyone else and the consequence of that is we have had to survivor as best we can, often leading very lonely, alienated and isolated lives.. . To me its not about a label, I may be neurologically different, but I am still a person and those of us on the autism spectrum are as deserve and different as those that are not. Labels are all too easily given by professionals like pills who are still trying to understand us, we are not experiments and just like the universe there are no answers, well no real fact. . As Donna Williams says we are like a "fruit salad" mix and many of us on the autism spectrum are made up of many or variables, it's not the labels, diagnosis that's important it's being able to understand ourselves and our symptoms as they are a part of who we are, just like all the factors that make us whole the environment, circumstance etc... etc.... . . . “As much as you may find me different, I may also you. Am I right are you wrong, maybe each should allow. Your way may not be mine and mine maybe not yours. Understand me before you judge or try and change me. Accept each difference, so each of us has confidence to be. Does there need to be reason or mystery like the universe. I am an individual in my own right, like each, every one of us. My autism core / my very heart is what keeps me strong. I may need help to balance some of my differences at odds. As at times I feel alienated in a society I was born to live in. Is there really a need to study me, or me to study you!” . . .Research Autism After doing some of my own research lately, I have read some ridiculous reasons for autism, like caused by toxic substances, over-vaccination and the list goes on.. maybe even evolution itself... all species have to grow, adapt, and change to survive! Most autistic people I know seem to have quite complex minds, the thing is no one really knows the answers, just like the universe. . However while researchers have yet to understand what causes AS, there is likely a genetic component. Recent research results suggest current hormone abnormalities in women with AS and their mothers. Direct investigations of serum testosterone levels and genetic susceptibility to high testosterone production or sensitivity in women with AS would illuminate the origin of these conditions, research on going, For current research view below "Research Sutism" etc... . Advances in autism research: genetic influences Research into the causes, diagnosis, and the treatment of ASD has advanced interactively. Imaging studies have shown that many major brain structures are implicated in autism. Other research is focusing on the role of neurotransmitters such as serotonin, dopamine, and epinephrine. The past decade has been marked by an increased interest in the genetic basis of autism, and recent developments point to genetic factors playing a prominent role in the causes for ASD. . But I cannot help but think back, wonder has so far most of the autisim research come about thru the study of individuals who have acquired the condition from brain injuries and many people are of the mistaken idea that many retarded or autistic people were born that way when in fact they were not, that just happens to some of us on the autism spectrum which is vast, with more understanding I only hope better awareness for all will come about soon and allow people like me to be people! . Frequently Asked Question: Autism/Aspergers etc.. is it genetic No one knows for sure yet, but many of us on the autism spectrum think it's quite possible, often having ASD children and/or other extended family members also differently minded!. . Quote: Statistics - The only science that enables different experts using the same figures to draw different conclusions. - Evan Esar ______________________ ______________________ . [excerpt - Copyright © 1993-2004 The Condé Nast Publications Inc.] . ".. If we could eliminate the genes for things like autism, I think it would be disastrous," says Wilhelmsen. "The healthiest state for a gene pool is maximum diversity of things that might be good." / One of the first people to intuit the significance of this was Asperger himself - weaving his continuum like a protective blanket over the young patients in his clinic as the Nazis shipped so-called mental defectives to the camps. "It seems that for success in science and art," he wrote, "a dash of autism is essential." . . . .
1943: Based on a study of 11 socially withdrawn children, child psychiatrist Leo Kanner identifies autism as "lack of affective contact, fascination with objects, desire for sameness and non-communicative language before 30 months of age." 1944: German scientist Hans Asperger describes a "milder" form of autism, known today as Asperger's syndrome. Over time, experts will place Asperger's and other autism-related conditions on a spectrum ranging from mild to severe dysfunction. 1965: U.S. psychologist Bernard Rimland establishes the Autism Society of America, one of the first advocacy groups for parents of children with autism. 1967: Autism is classified under schizophrenia in the International Statistical Classification of Diseases and Related Health Problems. 1971: Eminent psychologist Bruno Bettelheim promotes the "refrigerator mother" theory, which holds that "cold," unurturing parents, especially moms, are to blame for autism. 1980: Autism is categorized as a developmental disorder separate from schizophrenia in the Diagnostic and Statistical Manual of Mental Disorders (DSM-III), the reference book used by health-care professionals to diagnose mental health disorders. 1994: Asperger's syndrome is officially added to the DSM-IV as a progressive developmental disorder. Two nonprofit groups, the National Alliance for Autism Research and Cure Autism Now, are founded to stimulate autism research and raise awareness about the disorder. 2000: In response to broad government concerns, vaccine makers remove thimerosal, a mercury-based preservative, from all routinely given childhood vaccines. Public fears grow that exposure to the preservative may be tied to autism. The NationalInstitutes of Health estimates autism affects 1 in 500 children. 2001: The NIH estimates autism affects 1 in 250 children 2004: The Institute of Medicine, which advises the government on scientific matters, finds no credible evidence of a link between thimerosal and autism . . . or between the measles-mumps-rubella vaccine and autism. 2007: The Centers for Disease Control and Prevention reports autism affects 1 in 150 children. Medical experts say the changed number reflects better detection, broader diagnostic criteria and increased public awareness -- not a spike in the disease. Brittney Johnson - 1 July 2008 _________________________________________
. University of Cambridge (UK)
Volunteer - Research at CambridgePsychology.com http://www.cambridgepsychology.com/volunteers/default.asp
We are a research group from the Department of Experimental Psychology, specialising in the on-line testing of cognitive styles. This includes profiling people's interests and preferences. Some research projects only involve filling in questionnaires and so are open to volunteers worldwide. Other studies involve being assessed by one of our team and so are limited to volunteers in the UK.
Who can take part? We will then contact you from time to time to tell you about projects which might be of interest to you. You are under no obligation to participate in all or even any of the projects. our volunteer database. Confidentiality any information you provide is entirely confidential and will only be available to researchers in our group. You may opt out at any time and we will remove your details from our volunteer database. See our Privacy Policy and our Terms and Conditions . Neurological Foundation of NZ http://www.neuroloorg.nz/index.phpgical. . Research Participants NZ STILL WANTED;- http://www.geocities.com/asdsurveych/
. _____________________________________________________________________________ . -- American Journal of Neuroradiology -- Proton MR Spectroscopy: Higher Right Anterior Cingulate N-Acetylaspartate/Choline Ratio in Asperger Syndrome Compared with Healthy Controls (Sept 07) . ______________________________________________________________________________ . Join in one of many AsPlanet forum discussions . Don't try to make us 'normal' / Cure us! Research, Autism screening, DNA testing.... . Vaccine / Autism / Fad Treatments! http://asplanet.info/forum/index.php?topic=43.0 - One post of many:- "Being on the SAutism Spectrum myself I do not and have never suffered, just differently minded. So personally I feel there is NO link to sutism and vaccines I was born different. I am not a expert in the vaccine field, but feel we all have to make our own minds up and the best way to do that is listen to the real experts, top research centers and up to date info. . My gut feeling even before reading all the best research information would still be NO. I do not take any think lightly, as very rarely even take any form of medication or drugs... but I do believe these vaccines save many lives.. scare mongering kills! . Just some expert opinions: The MMR Vaccine and Autism -Tim Worstall This rather surprised me in the papers this morning. . The measles, mumps and rubella vaccine is safe and does not cause autism, the most comprehensive study carried out on the jab has concluded. . Is there anybody out there who seriously thinks it does? . No, that's being unkind I think, my position is clearly influenced by the fact that I actually know something about the background. (Disclosure, I'm paid to write about Simon Baron Cohen's theories elsewhere and given that he's the head of the Autism Research Centre at Cambridge, . The observed rise in autism incidence from the early 1980s onwards has been down to two things. . 1) The diagnosis was changed then from being purely what we might call "classic autism" to the autism spectrum, including conditions like Asperger's Syndrome. Change the diagnosis and you'll change the incidence, obviously. . 2) If Baron Cohen is correct (and he does seem to be) there's been a rise in assortative mating. This leads to more children with the extreme systemizing brain type which is the definition of autism. . No, it hasn't been the use of mercury in vaccines, which is the current US woo woo scare. (When Japan removed such mercury from childhood vaccins the autism rate continued to climb just the same as everywhere else.) Nor is it the MMR vaccine, which has been the woo woo scare here. . So can we get back to people vaccinating their children please? We really don't want to return to visions of children dying, being brain damaged, by measles, do we? Or children being born deaf, dumb and blind as a result of their mothers getting rubella while pregnant? Nor, if I might mention something closer to home*, a return to 1% of adult male mumps sufferers becoming infertile? . The Centers for Disease Control says "There is no convincing scientific evidence of harm caused by the low doses of thimerosal in vaccines, except for minor reactions like redness and swelling at the injection site." . The American Academy of Pediatrics says"No scientific data link thimerosal used as a preservative in vaccines with any pediatric neurologic disorder, including autism." The Food and Drug Administration conducted a review in 1999 -- the year thimerosal was ordered to be removed from most vaccines -- and said that it "found no evidence of harm from the use of thimerosal as a vaccine preservative, other than local hypersensitivity reactions." . The Institute of Medicine’s Immunization Safety Review Committee concluded "that the body of epidemiological evidence favors rejection of a causal relationship between thimerosal-containing vaccines and autism." . And a study of California Department of Developmental Services data published last month indicated that there was "an increase in autism in California despite the removal of thimerosal from most vaccines." . MMR vaccine 'does not cause autism' - Telegraph http://www.telegraph.co.uk/news/main.jhtml?xml=/news/2008/03/18/nmmr118.xml . How Safe Are Vaccines? 21 May 2008 by Alice Park - Time Interesting article, I guess until there are clear guild lines we will all have to make up our own minds: http://www.time.com/time/health/article0,8599,1808438,00.html . Nearly all experts say NO - you decide. . But fad treatments, alternative treatments is big business - money to be made. Maybe I will start my own fad treatments and charge (water and exercise) work better than most fad treatments! . The great autism rip-off http://www.dailymail.co.uk/health/article-1023351/The-great-autism-rip--- How-huge-industry-feeds-parents-desperate-cure-children.html obviously some of the knowledge has sunk in.)" . _______________________________________________________________________________ . . AUSTIM RESEARCH . Autism is a chronic, nonprogressive developmental disorder. Individuals with autism have a unique set of symptoms in three areas: socialization (interaction with others), communication, and behavior. Autism is a common disorder, when other diagnoses such as pervasive developmental disorder (PDD), pervasive developmental disorder (not otherwise specified - PDD-NOS), and Asperger's disorder are included in the spectrum. . Autism is a complex genetic disorder thought to be caused by one or more genes, either acting alone or together with other factors. Through the Medical Genetics collaborative research study into the hereditary basis of autism, we hope to find the gene(s) that leads to autism. Finding these gene(s) will provide valuable insight into how the disorder is caused and will hopefully lead to improved diagnostic and treatment modalities. . . Can Autism Be Inherited?We are often asked the question, Am I at risk for having a child with autism or having another child with autism? The answer is not simple since autism has many causes. Some individuals may have a genetic form of autism. If possible, the underlying cause for the autistic-like behavior must be identified. Several inherited disorders are associated with autistic-like behavior. Some of these disorders include Fragile X Syndrome, Tuberous Sclerosis Complex (TSC), and Phenylketonuria (PKU). When a diagnosis of autistic disorder is made by a health care provider, it is important to determine whether the behavior is the result of one of these well known genetic disorders. If specific testing indicates one of these disorders is responsible for the behavior, the recurrence risk and perhaps the medical treatment will be altered. . In most cases, there is no specific cause for autism in an individual. In these instances, the autism is said to be idiopathic, meaning that the behavior is secondary to an unknown cause. These non-specific answers can be frustrating for parents or family members who would like some explanation. In this research study, we include individuals and families with idiopathic autism because these are the individuals most likely to carry the gene or genes that cause autism. By finding the genetic factors that play a role in the development of autism, we will someday be able to provide accurate recurrence risks to individuals and families as well as develop better treatments. . For families that have one child with idiopathic autism, there is an increased risk of having another child with autism. This recurrence risk is estimated to be about four percent which is greater than that found in families that do not have a child with autism. Spiker D., Lotspeich L., Kraemer H.C., Hallmayer J., McMahon W., Petersen P.B., Nicholas P., Pingree C., Wiese-Slater S., Chiotti C. et al. Genetics of autism from 37 multiplex families: American Journal of Medical Genetics 54:1, 27-35, 1994. . . . 2009 - Online survey about life experiences and worries in AS . I started completing this surveyor, but first taking a lot of time and maybe would of continued to do if many of the questions were not just tick boxes, that I have already answers a few times for someone else or that did not make sense for me to tick as felt would not of given a true prospective of what it's really like and felt could be misleading and the outcome would not then be a true perspective of what we are really like. . I know the problem is if we do not answer some of these surveys often the "professionals" end up with limited answers from not the real hug of the autism Community and get a one sided view, I do feel we all need to work together for the future and help others understand, but by limiting how we respond or what we can put I feel often they are just trying to answers their own questions and not really getting a true perspective on what asd is really like! . It is for those who have Asperger syndrome, I guess diagnosed or self diagnosed does not seem to include classic autism as such, but I tend to think we are all under the same autism umbrella within the bigger spectrum we all have an autism core HEART as I see it anyway. I guess I do not feel we can be simplified into a few simply facts as we are as diverse and different as those not on the autism spectrum. But please make up your own mind, would love to hear your thoughts on this anyway.... . .
. Evidence Against X-linkage as a Major Cause of Autism Since it is a known fact that more males have autism than females, researchers believed that autism might be associated with a non-working gene on the X chromosome. Recent data for our group and others have shown that it is unlikely that a gene on the X chromosome causes the majority of cases of autism. How do we know this? By studying many different families in which more than one member has autism, or a variant of autism such as Asperger’s syndrome or PDD, we have seen that in a number of families the "gene" is passed through the father to a male child with autism. Since a father transmits an X chromosome only to his daughters and not his sons, the "gene" cannot be on the X chromosome in these families. Cuccaro M.L., Wolpert C.M., McClintock D.E., Abramson R., Beaty L.M., Storoschuk S., Zimmerman A., Frye V., Porter N., Cook E., Stevenson R., DeLong G.R., Wright H.H., Pericak-Vance, M.A. Familial aggregation in autism: Evidence against X-linkage as a major genetic etiology. American Society of Human Genetics 1996. Hallmayer J., Spiker D., Lotspeich L., McMahon W.M., Petersen P.B., Nicholas P., Pingree C., Ciaranello R.D. Male-to male transmission in extended pedigrees with multiple cases of autism. American Journal of Medical Genetics. 67:13-18, 1996.. . . Serotonin and Autism: What We Know So Far Serotonin is a chemical that functions as a neurotransmitter (chemical communicator) in our brains. (Specifically, serotonin is concentrated in a part of the brain stem called the raphe nucleus). Serotonin is also present in certain blood cells called platelets. It is thought to be involved in inducing sleep, sensory perception, temperature regulation, and control of mood. Serotonin is of interest to autism researchers because some individuals with autism have consistently been found to have high levels of serotonin in their blood stream platelets. However, it is unclear what a high serotonin level signifies. . Dr. Cuccaro and his colleagues at W.S. Hall Psychiatric Institute/USC School of Medicine in Columbia, South Carolina may have discovered an important clue. They conducted a study that looked at the level of blood (platelet) serotonin and the verbal ability of individuals with autism and their immediate relatives. Using a well accepted IQ test (Wechsler scales), these researchers found that individuals with high serotonin platelet or blood levels, had lower verbal ability scores. However, other measurements of intellectual abilities were not changed, including visual-spatial ability or memory. Intelligence is a combination of many different abilities including verbal, visual-spatial ability, memory and other areas. . What does this mean for individuals with autism and their immediate relatives? First, it provides one more biological clue about autism. While not all individuals with autism have high blood serotonin levels, many individuals do. Perhaps individuals with autism and high serotonin levels have one type of autism or perhaps high blood serotonin levels influence the signs and symptoms associated with autism. More research is needed before the relationship between serotonin levels and autism is understood. . Currently, a high or low blood serotonin level does not alter in any way how individuals with autism are managed medically. Occasionally, medications called serotonin reuptake inhibitors (e.g. Fluoxetine, Sertraline and Paroxetine) are prescribed for some individuals with autism. (This type of medication is also widely used to treat depression). Serotonin reuptake inhibitors keep serotonin in the brain longer so that its function as a chemical communicator is further enhanced. Studies in different populations of autistic individuals will help establish which individuals with autism will benefit from serotonin reuptake inhibitors or other drugs that influence blood and brain serotonin levels. Cuccaro, M.L., Wright, H.H., Abramson, R.K., Marstellar, F.A., Valentine, J. Whole-blood serotonin and cognitive functioning in autistic individuals and their first-degree relatives. The Journal of Neuropsychiatry and Clinical Neurosciences. 1993; 5: 94-101. . . Total Brain Volume Can Be Greater In Individuals with Autism Thirty eight high-quality magnetic resonance image (MRI) scans of individuals with autism who were more than 12 years old were obtained. In addition, 38 MRIs of individuals over 12 years of age who did not have autism were also obtained. These MRIs were used as controls. Through careful measurement of the volume of the brain, Piven et al. reported that in almost half of the individuals with autism, the total brain volume was greater than in individuals without autism. . These results confirm earlier MRI findings reported by the same group. These results suggest a problem in brain development (as opposed to a later injury). Unpublished data suggest that the enlargement may occur in particular regions of the brain and is not a generalized phenomenon. These results should provide important clues about the neurobiology of autism. For example, a new group of genes that are responsible for brain growth have recently been discovered. Abnormalities in these genes may underlie our findings of regional brain enlargement in autism. Also, since brain enlargement occurred in almost half (46%) of the subjects studied, brain size and shape may aid us in eventually identifying subgroups of autistic individuals with different causes for their autism. Dr. Piven and his associates are continuing to study imaging data and will be trying to obtain further funding to follow-up these results over the next year. Piven J., Arndt S., Bailey J., Havercamp S., Andreasen N.C., Palmer P. An MRI study of brain size in autism. American Journal of Psychiatry: 12: 1145-1149, 1995. . .. Improvement In Autistic Behavior Seen As Individuals AgeAt the April 1995 Society for Research in Child Development Meeting, Dr. Piven and his research group presented the results of their behavioral studies. They reviewed data on the current autistic behaviors in 38 high-functioning adolescent and adult autistic individuals and compared it to their behaviors at age 5 years. These researchers found that there was clear improvement in all three domains of behavior that define autism. . However, the most substantial change occurred in the social and communication behaviors. Eighty percent of the males and one hundred percent of the females improved their social and communication skills. Both males and females had fifty percent improvement in ritualistic-repetitive behaviors. Dr. Piven and his colleagues are continuing their study of the course of behavioral change in autism. Piven J., Harper J., Palmer P., and Arndt S. Course of behavioral change in autism: a retrospective study of high-IQ adolescents and adults. Journal of the American Academy of Child Adolescent Psychiatry 35:4, 523-29, 1996. .. Center for Human Genetics Autism Research To help us reach the goal of discovering the genetic, or inherited causes of autism, we collaborate with other researchers and medical centers. Our growing team now includes other experts in the fields of autism and genetic research. Our collaborators include Robert DeLong, MD of Duke University Medical Center, Dr.'s Ruth Abrahmson, Mike Curcarro and Harry Wright of the W.S. Hall Psychiatric Institute (Columbia, SC), Joseph Piven, MD at the University of Iowa (Iowa City, IA), Susan Folstein, MD at Tufts University (Boston, MA), Nina Sajaniemi, PhD at Helsinki University Central Hospitial (Helsinki, Finland), and their research groups. . In order to find the genes for autism, we compare the genetic material (DNA) of individuals with autism to their family members without autism. We also compare genetic material between the families that have members with autism. The genetic material is obtained through blood samples. Once a family decides to join our study, we request all participating family members to give a blood sample. We also review family and medical history and conduct the Autism Diagnostic Interview (ADI) in order to confirm the diagnosis of the family member(s) with autism. However, families will not have to travel to Duke University Medical Center in order to participate. . Instead, we try to visit the families personally to collect blood samples and diagnostic information. Family physicians may also collect the blood samples and mail the samples to us. The family history interview and ADI may be done as a telephone interview at any time convenient for the family. All information shared with the Center for Human Genetics is considered medical information and thus kept confidential. Since this is an ongoing research study to identify the genes associated with autism, there are no individual test results that we can report to participating families. However, we update the families participating in our study each year through our newsletter which explains our current findings and research progress. . This has been a productive year for the autism genetic research study. Over the past year we have had the privilege of working with more than 125 families. Sixty of these families have more than one family member with autism. We have enjoyed meeting these families and we look forward to working with them over the next few years. . . Support Organizations:
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Love for sons drives parents' research By Bryan Painter
Kathy Randstarted taking her work home. Not long after that, husband Jim Rand showed signs of taking his home life to work.
But this isn't about two people growing apart. It's a story of a husband and wife using their vocations to love and care for their sons — both diagnosed with autism spectrum disorders.
The Rands were researchers at the University of Wisconsin-Madison as the 1980s were drawing to a close. Kathy was studying molecules important for development of the retina, and her subjects were chick embryos. Jim was studying roundworms, technically called C.elegans. About 1 millimeter long, they have 302 nerve cells.
That's nothing compared to the brain, which has about a trillion nerve cells, he said. But the roundworms are a good model system for studying the function and development of a nervous system.
In research as in life, the paths a person intends to take often become complex and he or she — or both in this case — must adapt. So they did. There are so many parents who help their children in many different ways.
This is one of those stories, the touching story of howJeremy Rand, 18, and brother Marty Rand, 12, have been blessed with their own research team, their parents.
What she did weeks early in July 1989 with Jeremy.
The plan was, she would spend six months at home with the newborn and then return to work. That was still the plan when the Rands moved to Oklahoma to work at the Oklahome Medical Resesearch Foundation. Jeremy was 4 months old.
"But at some point, we realized this was a difficult child to manage,” Jim Rand said. "And we have been dealing with that and the sequels to that for the last 18 years.”
At 2, Jeremy could use a DOS-based computer. By age 5 could solve mathematical equations more suited to a fourth-grader. But any variances from the norm could and often would send him into tantrums. He was sensitive to certain odors, noises and even touch was an issue, such as the need to wear soft clothing and remove tags from his shirts.
Jeremy was 6 when doctors diagnosed him with Asperger syndrome, one of the autism spectrum disorders.
The Rands' plan changed. Kathy Rand remained at home. Instead of pursuing her career, she began to research Asperger syndrome and other types of autism. The scientist within the mom studied journal articles and books. She went to conferences. She consulted with other professionals. She asked questions.
"I learned how to assemble and coordinate a team of expert professionals,” Kathy Rand said. "We went to good people, took their advice, and learned from them, so we could address issues when we weren't in their offices.”
The effort was full force — driven by love. In the summer, they would hire a teacher to work with Jeremy about four hours a day. Then they would take over on weekends. This amounted to about 28 hours a week of one-on-one coaching. "It's hard work, because if you think about it, how do you coach somebody on how to have a conversation?” Jim Rand said. "They don't understand about interaction and knowing what to pay attention to.
"In a conversation, you listen to what the other person says and then come up with something relevant to contribute. Jeremy couldn't figure out how to say something relevant to the topic.”'
As a researcher, Kathy Rand realized learning wouldn't come in mass quantities, but rather "really tiny” steps, Jim Rand said. Those steps weren't always forward.
"When you parent a child on the autism spectrum, you know that if you don't succeed, your child may not be able to support themselves and live independently,” Kathy Rand said.
So they moved ahead.
What he's done Jeremy was 14 and Marty, diagnosed with a mild form of autism, was 8 when a study revealed that a gene known as neuroligin was mutated in some autism patients. Neuroligin is involved with how nerve cells communicate.
This was Jim Rand's open door. "And suddenly, we're talking about something I know how to study,” said Jim Rand, who started taking his home to work with him.
Eventually, he received a research grant from Autism Speaks, the nation's leading funder of private autism research. So, he's studying behavioral changes in worms with neuroligin disruptions.
"I do not want to push the comparison too far,” he said. For instance, he said you shouldn't say the worms have a deficit in communication or social interaction. "But the other aspect is sensory problems,” he said. "On the molecular level, the comparisons are quite strong.”
Even 15 to 20 years ago, parents of children with muscular dystrophy would write him to see if there was anything he knew that might help their children. He would explain that he didn't do clinical research and then try to point them in the right direction.
That means he wasn't so focused on the squirming worms beneath his microscope that he forgot that people had diseases, and in many cases, these people had parents who were searching for answers. "Now I'm one of the parents,” he said. And now
Researchers sometimes see things differently. Jeremy scored 35 out of a possible 36 on the ACT, which the Rands were pleased with, but not totally surprised. They knew he excelled academically; it was behavior issues and social skills that have presented the greatest challenges.
For instance, a teen on the phone in my house would be much less cause for celebration than a teen in my house taking out the trash . That isn't the case when the Rands see their junior atNorman North High School with a phone to his ear talking to a friend.
"It's an effort for him, but he is now able to do it,” Jim Rand said. "He's moved a long way to the point where it's a good possibility he will be able to live independently and have a job and manage his life. "That's tremendous.” . . .
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