Skip to main content

Home/ Autism Teachers/ Group items tagged family

Rss Feed Group items tagged

Patti Porto

ASERT PA Autism > Philadelphia Autism Project > About the Project > Project Highlights ... - 0 views

  •  
    "These groundbreaking family-focused films detail the emotional reality of dealing with an autism diagnosis; how it affects the family unit and the unique challenges that families from diverse cultural backgrounds face. The goal of these videos is to increase awareness, in order to help children from underserved families to become better armed to obtain equal services."
Tero Toivanen

A Controversial Autism Therapy Unravels a Family - TIME Healthland - 0 views

  • "With a facilitator guiding her arm, the child who had never been taught to read was suddenly writing poetry and English essays, taking history exams and doing algebra. The middle-schooler who couldn't put on her coat without help was typing about her plans to become a college professor,"
  • But the technique, in which the aide's hand is supposedly guided by the child to type what she wants to say, has been proved ineffective. It has been shown to rely on the aide's projections rather than to reflect the child's thoughts. Although some autistic children can learn to communicate genuinely via a keyboard with only initial guidance, facilitated communication, in which an aide always does the typing has repeatedly failed to demonstrate that the words are written or thought by the child. For example, when the facilitator is not allowed to hear the questions being asked of the child, the resulting answers are wrong or nonsensical.
  • When the Wendrow's daughter's aide typed allegations of sexual abuse against the girl's father and brother — and claimed that the child's mother had been ignoring her complaints — a prosecution of the family was set into motion that became nearly unstoppable. The aide refused to believe she was not typing her own ideas, even though the child was clearly not capable of the complex language being attributed to her. Once prosecutors and the aide became convinced of the truth of the allegations, even overwhelming evidence of their falsehood was ignored.
  •  
    Facilitated Communication (FC) is dangerous!
Tero Toivanen

A week ago, a new study published in the Archives of General - 0 views

  • The Howard Hughes Medical Institute describes how researchers using "high-throughput gene sequencing technology" were able to identify several de novo or spontaneous gene mutations in 20 children with sporadic autism spectrum disorders -- that is, their family members showed no other sign of autism.
  • The team identified 21 spontaneous mutations -- meaning they weren't inherited from either parent -- in the children's DNA. Eleven of these were mutations that would alter the protein encoded by the affected gene. In four of the 20 children, the researchers found mutations that were severe, some of which have been previously linked to autism, intellectual disability, and epilepsy.
  • one child had a mutation in the GRIN2B gene, which is crucial for neuronal signaling.
  • ...3 more annotations...
  • Another individual had an extra nucleotide in FOXP1, a gene that, along with its close relatives, has been heavily implicated in language defects.
  • These new findings support the 'multi-hit' model of autism, which suggests that having more than one mutation can cause or worsen symptoms of autism and other brain disorders. The different combinations of mutations may contribute to the heterogeneity in ASDs.
  • That such different combinations of genetic mutations contribute to a child being autistic could account for why individuals with an ASD diagnosis have some very similar, and very different, features.
  •  
    "The Howard Hughes Medical Institute describes how researchers using "high-throughput gene sequencing technology" were able to identify several de novo or spontaneous gene mutations in 20 children with sporadic autism spectrum disorders -- that is, their family members showed no other sign of autism."
Tero Toivanen

What Do New Genetic Findings Mean to Families with Autism? - 0 views

  • reply from lead researcher Hakon Hakonarson:
  • The variant we detected at the 5p14 locus (common variant) has been present for a long time in the genome (most likely since man moved out of Africa) and this region is highly conserved between species which means that it is regulating gene expression and gene function (the CHD10 gene being the most critical one).
  • We know that the association is strongest in those individual who have the greatest abnormalities in social skills/interactions and those that show least interest in interactions; we have not detected any other characteristics yet, but we keep working on it.
  • ...2 more annotations...
  • Once we learn about this difference, we can then look for medications that block the consequences of the variant and once we make sure they are safe, we can then start testing these new medications in children who are at risk of developing autism, with the objective of preventing autism (i.e., avoid breakdown in connections between nerves and abnormality in brain connectivity).
  • Response: Yes, all of them could be tested in utero; we have identified 10 new variations (9 rare and 1 common) and we have replicated (and confired) four other once that were previously published (neurexin 1, contactin 4, 15q11 and 22q11). However, we do not have a yes or no answer as to whether the fetus will be autistic -- but if we are testing a fetus in an autistic family the value of the test is much higher.
Tero Toivanen

Mutations in 3 Genes Linked to Autism Spectrum Disorders - 1 views

  • Mutations in 3 Genes Linked to Autism Spectrum Disorders : Mutations in three new genes have been linked to autism, according to new studies including one with investigators at Mount Sinai School of Medicine
  • The findings, in a trio of papers revealing new genetic targets in autism, are published in the April 4th online issue of the journal Nature.
  • The genes with mutations identified in the studies – CHD8, SNC2A, and KATNAL2 – were discovered with a new state-of-the-art genomics technology known as exome sequencing, where all protein coding regions of the genome, called the exome, are analyzed.
  • ...3 more annotations...
  • The researchers say that with further characterization of the genes and sequencing of genes in thousands of families, they will be able to develop novel therapeutics and preventive strategies for autism.
  • The institutions involved in this study sequenced data from more than 500 families (both parents and the affected child), examining the protein-enriched areas of the genome.
  • “When the same mutations are found in multiple affected children and none are found in children without autism, we believe that we have identified mutations that collectively affect a higher proportion of individuals with autism,” said Dr. Buxbaum. “Our studies revealed that the proteins encoded by the mutated genes interact with each other far more than expected, demonstrating significantly greater connectivity than would be expected.”
Graeme Wadlow

Primary Care for Children with Autism - 0 views

  •  
    Primary Care for Children with Autism - February 15, 2010 - American Family Physician
Team RxPinoy

Alternative Choices: 80 Percent Autism Divorce Rate Debunked in First-Of-Its Kind Scien... - 0 views

  •  
    "a study by researchers from Kennedy Krieger Institute in Baltimore found that a child's autism has no effect on the family structure."
Tero Toivanen

NeuroLogica Blog » The Genetics of Autism - 0 views

  • What this means is that there is likely to be a complex set of many factors that contribute to ASD - not one single cause.
  • The same exact situation is true for other entities, like schizophrenia and attention deficit disorder (ADD).
  • One difference, however, is that schizophrenia and ADD likely represent changes to particular parts of the brain, while autism is likely due to changes in the global architecture of the brain.
  • ...5 more annotations...
  • Getting back to the genetics of autism, current models are therefore consistent with what is being found when the genetics of autism is researched - researchers are finding many genes that predispose to autism in a subset of cases but no single or simple universal cause. At present, 133 different gene variants have been linked to autism.
  • This new research, conducted by Dr. Hakon Hakonarson of the Children’s Hospital of Philadelphia, is a genome wide analysis involving about 10,000 individuals.
  • The results are especially significant because the variants lie between two genes, called CDH9 and CDH10, which are known to play an important role in forming nerve connections in the brain.
  • The gene variants that correlated with ASD are for proteins that are involved in the process of neurons forming connections with each other. There is already other lines of evidence that suggest what is different in ASD brains is a decrease in the amount of interconnectedness and communication among neurons. It is therefore likely no coincidence that this study found genetic correlations for proteins involved with neuronal connections.
  • This also is compatible with the finding that many separate genes are potentially involved with ASD - for there are many separate genes and processes involved with forming and maintaining neuronal connections.
  •  
    A new genome-wide analysis of families with autism has found significant gene associations, adding to the growing evidence for strong genetic contribution to autism.
Tero Toivanen

Facilitated Communication - 0 views

  • Facilitators who work closely with individuals with autism, as well as other developmental disabilities (e.g., mental retardation, cerebral palsy, etc.) report that individuals with little or no language are fully expressive about life experiences, thoughts, feelings, choices, preferences, and decisions, when allowed to communicate through facilitation.
  • Biklen and other proponents of facilitated communication have been strongly opposed to objective, empirical validity testing. They maintain that testing undermines the individual's confidence, places him or her under pressure, and introduces negativism that destroys the communicative exchange.
  • Rather, under the surface of autism is a person with full cognitive faculties. Smith and Belcher (1993) indicate that much of this suggests a basic unwillingness on the part of families, professionals, and caregivers to accept the individuals with disabilities for what they are, thus diminishing the value of the individual in a way that the disability itself could not have.
  • ...12 more annotations...
  • Thompson (1993) describes facilitated communication as a classic example of the self-fulfilling prophecy. The facilitator wants to believe that the person with a severe cognitive and language disability is actually of normal to superior intellectual ability. Parents especially want to believe that a way has been found to finally unlock the door to their real son or daughter.
  • In short, people want facilitated communication to work.
  • Advocates of facilitated communication often respond to naysayers, "It can't hurt to try it." Biklen agrees, "It is not harmful to teach people to communicate through pointing." However, he qualifies his claim with the caveat that "it can be harmful if the facilitator over interprets, does not monitor the person's eyes, facilitates when the person is looking away, is not sensitive to the possibility of guiding the person, and asks leading rather than clarifying questions."
  • Some argue that "false communication" may distort beliefs, understanding, and rehabilitative approaches to persons with autism and other developmental disabilities.
  • Additionally, facilitated communication in the past few years has been the source of many contested abuse allegations, usually allegedly reported by an individual with very limited unassisted communication skills against a family caregiver or caregivers.
  • There are at least 50 legal cases in the U.S. involving allegations of sexual abuse produced through facilitated communication (Berger, 1994). Several such cases have already occurred in Australia, and some have arisen in Europe (Green, 1992).
  • With the exception of three empirical studies (Intellectual Disability Review Panel, 1989; Calculator and Singer, 1992; and Velazquez (in press)) which provide preliminary validation of facilitated communication, most of the support for the validity of facilitated communication is based on anecdotal reports.
  • Unfortunately, validity questions surround anecdotal reports of facilitated communication. In general, these reports lack the controls necessary to rule out experimenter biases, reliability concerns, and threats to validity (Cummins and Prior, 1992; Jacobsen, Eberlin, Mulick, Schwartz, Szempruch, and Wheeler, 1994).
  • Although Biklen (1990) admits that facilitator influence is a real possibility, facilitated communications are typically reported as though they are the words of the person with a disability.
  • Without exception, these empirical studies have questioned the authenticity of the communication as truly coming from the individual versus the facilitator.
  • Interdisciplinary Party Report (1988) and the Intellectual Disability Review Panel (1989) both of which examined the source of facilitated communications produced by persons in Australia, and found strong evidence that responses obtained through facilitation were influenced by the facilitator.
  • Gina Green, Director of Research for the New England Center for Autism and Associate Scientist for the E.K. Shriver Center for Mental Retardation, Inc., has reviewed over 150 cases where empirical testing was performed and cites 15 independent conduct evaluations involving 136 individuals with autism and/or mental retardatiion who were alleged to have been taught to communicate via facilitated communication. In none of the cases were investigators able to confirm facilitated communication by the 136 individuals.
  •  
    Facilitated Communication by Natalie Russo [First Published in Quality of Care Newsletter, Issue62, January-February 1995]
Jessica Dunton

Sensory Integrate Home - 0 views

  •  
    Free Resources and information for families who have children with autism, Asperger Syndrome, and sensory disorders.
Tero Toivanen

Family's life unravels with claims dad raped daughter | Detroit Free Press | freep.com - 0 views

  •  
    Facilitated Communication is dangerous: "The ordeal didn't end when it was clear that the girl wasn't communicating, after all. It didn't end when a sexual assault exam found no proof of abuse. And it didn't end when a prosecution witness insisted the abuse never happened."
Patti Porto

National Autism Center - 0 views

  •  
    The National Autism Center is May Institute's Center for the Promotion of Evidence-based Practice. It is a nonprofit organization dedicated to disseminating evidence-based information about the treatment of autism spectrum disorder (ASD), promoting best practices, and offering comprehensive and reliable resources for families, practitioners, and communities.
Tero Toivanen

Research Unearths New Treatments for Autism - 2 views

  • The Utah researchers found that children receiving a combination of the two treatments (Lovaas-type training at school and TEACCH methods at home) showed three to four times greater progress on all outcome tests than did children who received only the school-based treatment. That study was reported in the Journal of Autism and Developmental Disorders (Vol. 28, No. 1, p. 2532).
  • Researchers in Washington, D.C., are comparing a discrete trial training approach with a "developmental, individual-difference, relationship based" (DIR) approach, says child psychiatrist Stanley Greenspan, MD, professor of psychiatry at George Washington University Medical School.
  • Psychologist Robert Koegel, PhD, at the University of California, Santa Barbara, and his colleagues are attempting to tailor a standard treatment to the specific needs of an autistic child and family. The standard treatment is called pivotal response training
  • ...5 more annotations...
  • An initial retrospective study is comparing two groups of 20 children initially diagnosed with autism who were functioning well after two or more years of treatment, either with a discrete trial training approach or the DIR approach. The study aims to determine if treatment differences lead to subtle differences in outcome, for example, in terms of flexibility, emotional range, creativity and richness of the child's inner life. Investigators are planning to follow this research with a prospective, randomized, more rigorous study of the two approaches.
  • "In our previous studies we found out that it looks like you can't just deliver a standard treatment to autistic kids, that there's so much variability among the children that what works for one child doesn't work for another child," he says. "Our hypothesis is that...unless you individualize treatment, you're not going to get the best effect."
  • Researchers at the University of Maryland are testing an intervention to trigger children's "social engagement system," which includes behaviors such as listening, looking, facial expressions and vocalizations that support social interaction, says psychologist Stephen Porges, PhD. The treatment is designed to improve autistic children's ability to interact with others, thereby making them more receptive to traditional therapies.
  • The intervention is based on the theory that tensing the middle ear muscles enables people to pick out the human voice from lower frequency sounds in the environment, Porges says. Treatment involves exercising middle ear muscles by playing music that has been altered to include only frequencies associated with the human voice, which improves one's ability to listen to human voices. This, in turn, stimulates the entire social engagement system, Porges says. About 80 percent of 50 children with autism or other behavioral problems receiving this treatment via five 45-minute sessions in a double blind, randomized controlled study showed marked improvements in listening, language and other communication skills.
  • In a report last year in the Journal of Autism and Developmental Disorders (Vol. 28, No. 1, p. 15-23) evaluating an intensive home-based discrete trial training intervention, Stephen Sheinkopf, PhD, of the University of Miami and Bryna Siegel, PhD, of the University of California, San Francisco, noted that children receiving an average of only 21 hours per week of treatment showed gains in IQ comparable to those achieved by children receiving 32 hours per week. The intensity question remains an issue of importance for the autism community. "If we need 40 hours a week, fine," says psychologist Geraldine Dawson, PhD, of the University of Washington. "But if you only need 25, you have to realize that 40 hours is a tremendous burden not only financially, but on families and on the child."
  •  
    Several treatments, and combinations of treatments, are under intense study.
Tero Toivanen

An Outbreak of Autism, or a Statistical Fluke? - NYTimes.com - 0 views

  • A former Minneapolis school official said Somalis made up 25 percent of children in preschool classes for those with severe autism.
  • Since the cause of autism is unknown, the authorities in Minnesota say it is hard to know even what to investigate.
  • A small recent study of refugees in schools in Stockholm found that Somalis were in classes for autistic children at three times the normal rate.
  • ...2 more annotations...
  • Antivaccine activists are campaigning among them, which worries public health officials, especially because some families go back and forth to Somalia, where measles is still a significant cause of childhood death, according to Unicef.
  • Last year, she said, 25 percent of the children in preschool classes offering the most intensive treatment had Somali parents, while only about 6 percent of public school enrollment is Somali. Dr. Daniel S. McLellan, a pediatrician, said that when he began practicing at Children’s Hospital six years ago, he was struck by how many autistic Somali children he saw.
Tero Toivanen

Finding Perspective as an Autism Parent: First, Put on Your Own Breathing Mask - 0 views

  • Emergency professionals are taught that the first person they must ensure is safe from harm at the scene of an emergency is themselves for the simple reason that if they are injured they are no longer in a position to help anyone else. The same holds true for parents for if they don’t protect their own wellbeing and collapse from the strain emotionally or if they drive themselves into financial ruin, they are no longer in a position to help their children with autism or to help their children who do not have autism.
  • Ever the most heroic emergency worker can be confronted by their personal limitations and, to be a good emergency worker, they must accept them so that “all is not lost” in the process of “trying to save everything.” For our families to survive, we parents of children with autism must also be realistic when facing our own personal limitations. No one else can face them for us.
  •  
    Finding Perspective as an Autism Parent: First, Put on Your Own Breathing Mask
Tero Toivanen

Autism and Parental Obsession: A Troublesome Mix - 0 views

  • But what really troubled me about both of these books is the obsessive nature of each author's focus on her child's autism - and the assumption, on the part of both authors, that all parents should be equally obsessed.
  • Not only is it fiscally, personally and physically dangerous to become obsessive about autism treatments, but the the promise of a cure is disingenuous. The probability of a child with autism being literally cured is astronomically small (though of course symptoms can lessen and all children gain new skills). By playing on parents guilt and anxiety, though, it's not too hard to push families to the brink of financial, physical and personal collapse.
  •  
    Autism and Parental Obsession: A Troublesome Mix
Tero Toivanen

A Family United For The Autistic: Einstein: The Autism Connection - 0 views

  •  
    Einstein: The Autism Connection
Tero Toivanen

A Family United For The Autistic: Lewis Carroll: The Autism Connection - 0 views

  •  
    Lewis Carroll: The Autism Connection
1 - 20 of 32 Next ›
Showing 20 items per page