5|25: Celebrating Five Years of Autism Science Day 23: Gastroenterology consensus recommendations provide recognition of the need for specialized approaches to GI problems in children with autism
In honor of the anniversary of Autism Speaks’ founding on Feb 25, for the next 25 days we will be sharing stories about the many significant scientific advances that have occurred during our first five years together. Our 23rd item, Gastroenterology consensus recommendations provide recognition of the need for specialized approaches to GI problems in children with autism, is adapted from a 2009 press release.
Gastrointestinal (GI) problems are a commonly expressed concern of parents of children with autism spectrum disorders (ASD), but families have often found it difficult to find appropriate care for these issues. In December 2009, a consensus statement and recommendations for the evaluation, diagnosis, and treatment of gastrointestinal disorders in children with ASD were published in Pediatrics. These recommendations are an important step in advancing physician awareness of the unique challenges in the medical management of children with autism and will be a prelude towards the development of evidence-based guidelines that will standardize care for all children with ASD. The reports highlighted the crucial need for information to guide care, and emphasized the critical importance of fostering more research in this area, including genetic research, to support the development of these guidelines.
“The Pediatrics paper represents long-sought recognition by the mainstream medical community that treatment of GI problems in children with autism requires specific and specialized approaches,” reacted Dr. Dawson. “Autism Speaks has been actively engaged in the study of GI problems associated with children with autism, working toward enhanced medical community awareness for over five years through its research agenda and the Autism Speaks’ Autism Treatment Network (ATN). Dan Coury, M.D., ATN medical director, commented, “We are delighted to see the publication of important information that can support clinicians and caregivers in providing better care for children with autism, particularly with GI concerns, as parents unfortunately very often find it difficult to identify physicians who have an understanding of these issues and are able to provide appropriate medical care for their children. GI and pediatric specialists from six of the ATN sites participated in the forum and in the development of these recommendations, which shows the power of interaction among the communities and individuals dedicated to this problem. Autism Speaks is already engaged in the crucial next step which is to move beyond these consensus-based recommendations to develop evidence-based clinical guidelines.” In addition to development of evidence-based clinical guidelines for GI issues, the ATN is also currently working on evidence based clinical guidelines for medical management of sleep, and neurologic disorders associated with autism. “Delivery of evidence-based clinical guidelines will serve as excellent opportunities for future training and education of physicians,” added Dr. Dawson.
The consensus statement highlights several important themes, the first emphasizing that GI problems are a genuine concern in the ASD population and that these disorders exacerbate or contribute to problem behaviors. The need for awareness of how GI problems manifest in children with autism and the potential for accompanying nutritional complications and impaired quality of life were also emphasized.
In the second paper, the authors make consensus recommendations providing guidance on how current general pediatric standards of care that can and should be applied for children with ASD. George Fuchs, M.D., a co-author on the two papers and chair of the ATN GI Committee remarked, “The recommendations provide important guidance for the clinician to adapt the current practices of care (for abdominal pain, chronic constipation and gastroesophageal reflux) for the child with autism. The recommendations from the Autism Forum meeting complement the ATN’s on-going work to develop evidence-based, ASD-specific guidelines. The ATN is currently piloting newly created guidelines and monitoring their effectiveness. We anticipate this data will contribute to an evidence-based foundation to support best practices for GI problems in ASD.”
Autism Speaks is committed to the sustained support of efforts that address co-morbid medical conditions in the ASD population. In recognizing that there’s not enough evidence in any GI area and more research is needed, the Pediatric papers reaffirm the importance of the recent November 2009, Autism Speaks sponsored symposium and workshop on Gastrointestinal Disorders in Autism Spectrum Disorders. The symposium and workshop represented an important partnership with the American Academy of Pediatrics, and the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) – the largest professional society for GI and nutritional specialists, and a professional authority for the development and implementation of pediatric GI guidelines. The symposium raised awareness and provided the latest scientific information to an audience of 168 researchers, clinicians, and pediatric GI and nutrition specialists, most of whom had limited expertise in autism. The symposium was followed by a workshop that brought together a diverse group of experts in GI, nutrition, pediatrics, pain, ASD, and biological research. Recommendations were developed for an expanded and targeted research agenda for the field that will address current gaps in the knowledge base and aim to advance evaluation and treatment of ASD-GI disorders. Proceedings from the meeting are scheduled to be published in 2010. A unique and important element in both the Symposium and Workshop was the inclusion of parents of children with ASD.
Did you know?: Autism Speaks’ Autism Treatment Network (ATN) is developing evidence-based guidelines that will provide specific guidance to physicians on how to address a number of medical issues of concern for children with ASD. The ATN is currently piloting a GI guideline algorithm (decision flow charts) for the assessment and treatment of constipation, and a sleep guideline algorithm for insomnia. The ATN is also working on guidelines in the areas of psychopharmacology and neurology. For more information on ATN guideline activities, please see www.autismspeaks.org/airp.
John Elder Robison, author of bestselling memoir, ”Look Me in the Eye,” is appearing tomorrow (Wednesday, February 24) at 5:30 p.m. at Drew University, in Madison, N.J. The event, which takes place in room 107 of the University Center is free and open to everyone. He will be speaking and answering questions from the audience, followed by a book signing. Robison, who has Asperger’s Syndrome, will be talking about life on the autism spectrum, growing up and finding acceptance, and the latest research he is involved in at Harvard Medical School and Beth Israel Deaconess Medical Center in Boston.
This event should definitely be worth your time if you are in the area. Either way, be sure to check out “Look Me in the Eye” – it is a fun and compelling read.
Why autism is different for girls (U.K.)
With hindsight, Nicky Clark says early signs of autism were present in both her children. The elder one, though very bright, had a love of routine and was not interested in fantasy games like other children. The younger one liked to line things up in rows and would watch the same video clip over and over again for hours. When she got the diagnosis it came as a huge shock, as it would be for any parent. But there was an additional reason why it was unexpected – both her children are girls. Read more.
The prevalence of obesity in children with autism: a secondary data analysis using nationally representative data from the National Survey of Children’s Health (Biomedcentral.com)
The prevalence of childhood obesity has increased dramatically in the last two decades and numerous efforts to understand, intervene on, and prevent this significant threat to children’s health are underway for many segments of the pediatric population. Understanding the prevalence of obesity in populations of children with developmental disorders is an important undertaking, as the factors that give rise to obesity may not be the same as for typically developing children, and because prevention and treatment efforts may need to be tailored to meet their needs and the needs of their families. The goal of the current study was to estimate the prevalence of obesity in children and adolescents with autism. Read more.
Research builds on genetic link to autism and schizophrenia (EurekAlert)
A genetic link between schizophrenia and autism is enabling researchers to study the effectiveness of drugs used to treat both illnesses. Read more.
Dolphin therapy is booming despite concerns about efficacy and animal cruelty (The Washington Times)
Do you or does your child suffer from cerebral palsy? Down syndrome? Autism? A knee injury? General ennui? Read more.
Kathy Walsh Nufer column: East student wins writing contest about friends with autism (Appleton, Wis.)
Marcus Christenson has great affection for his buddies across the hall in Room 1128 at Appleton East High School. Read more.
SCSU Becomes First Conn. School to Open Center on Autism (Conn.)
Southern Connecticut State University is making a name for itself in the field of autism education. The university can already be considered a leader in that sphere – it’s currently the only public university to offer autism as a concentration in its special education Master’s program – but the biggest step yet is becoming the only school in Connecticut to open a center on autism spectrum disorders. Read more.
Teaching autistic child at home (North Port, Fla.)
The U.S. Centers for Disease Control and Prevention describes the symptoms of 5-year-old Charlie Jackson’s disorder as “atypical development in socialization, communication and behavior.” For parents Jenifer and Sean, it has meant their child continually retreated into his own world, unable to play or learn like other children. Read more.
House panel to take up autism insurance (Va.)
The middle-schooler can tell you what he needs and how he’s feeling, and it’s been worth every penny of the Maloney family’s life savings to get there. Read more.
Google SketchUp lets children with autism create (Salt Lake City, Utah)
Ever since its 2000 debut by two Colorado software designers, SketchUp has been known as a cutting-edge 3D modeling computer program for architects. By pushing a cursor around downloadable objects, designers created two-dimensional scenes that could later be rendered three-dimensional with editing tools. Read more.
Project could be a lifesaver (Catskill, N.Y.)
There’s nothing scarier than when a child goes missing, and the dread is compounded when that child has special needs. Read more.
Early investment (Pleasant Hill, Iowa)
As The Homestead prepares to celebrate its 15th anniversary, the organization faces budget uncertainty from county, state and federal sources. Read more.
Orlando To Evict ‘Freedom Ride’ (Orlando, Fla.)
Lawmakers in the city say some disabled people may have to go. Read more.
Project Lifesaver’s bracelets help track those with Alzheimer’s when they get lost (Gainesville, Fla.)
The Alachua County Sheriff’s Office issued a reminder to county residents Monday morning about a program that can help people with memory-loss issues who may get lost or confused. Read more.
Jordan, Ruth & Tartaglia Join Got Talent? – An Autism Benefit 5/24 (BroadwayWorld.com)
Got Talent?, a competition benefiting QSAC, a NY agency serving people with autism, has announced three new celebrities who are joining the Grand Finale Judging panel on May 24 at the Times Square Arts Center. Don’t think Paula, Simon and Randy. QSAC’s GOT TALENT – GOT: Leslie, Ruth and John – that’s funny man Leslie Jordan, (aka Beverly Leslie and Brother Boy) the sexy Dr. Ruth and Broadway & TV Star/Puppet Master John Tartaglia. Read more.
Chaotic love (TheSpec.com)
My house is extremely busy. What some people may call chaotic. I live with my mother, father, brother age 13, sister age four, foster sister aged 23, and my foster brother age seven. Unfortunately at birth he was diagnosed with a severe case of autism. Living with an autistic child really changes the way you live. Read more.
Hackney woman to run London Marathon for autism charity (U.K.)
A Hackney woman is trying to raise £1,600 ahead of this year’s London Marathon for The National Autistic Society (NAS). Read more.
Ashington man gets tattoos for charity – Video (U.K.)
Many people would not be brave enough to get a tattoo – let alone two on the same day. Read more.
Lee Flames will host Mountain State in Hoops-4-Hope Friday (Cleveland, Tenn.)
A chance to see the top-ranked NAIA team in the country at a bargain price plus a chance to recognize some very special people is what Lee University is offering local basketball fans this evening. Read more.
Del. Marshall says abortion remark misconstrued, apologizes (The Washington Post)
Virginia Del. Robert G. Marshall apologized Monday to people with disabilities for remarks suggesting that women who have abortions risk having later children with birth defects as a punishment from God. Read more.
Tallis takes off with first steps (Australia)
When Tallis Munro began Prep this year at Coolnwynpin State School, he was able to face his classmates eye to eye. Read more.
Uncle Charged in Abuse, Death of Special Needs Girl (Phoenix, Ariz.)
A 47-year-old man has been criminally charged with the death of his 5-year-old niece. Read more.
Robbers steal special laptop from visually impaired college student at St. Paul bus stop (St. Paul, Minn.)
Phil Sporer depends on his laptop more than many other college students. The 20-year-old is visually impaired, and his computer, issued by the Minnesota State Services for the Blind, has special software. Read more.
AUTISM SPEAKS NEWS
Tennis Celebrities to Participate in Event Benefitting Walk Now For Autism (Fla.)
For the fourth consecutive year, ten tennis celebrities of the present and legends of the past will play at the center court as part of the exclusive IV Annual Tennis ProAm which benefits Walk Now For Autism, now affecting 1 out of every 110 children. Read more.
5|25: Celebrating Five Years of Autism Science Day 22: Combined Therapies Hold Promise for More Effective Treatments
In honor of the anniversary of Autism Speaks’ founding on Feb 25, for the next 25 days we will be sharing stories about the many significant scientific advances that have occurred during our first five years together. Our 22nd item, Combined Therapies Hold Promise for More Effective Treatments, is from Autism Speaks’ Top 10 Autism Research Events of 2009..
Just over three years ago the FDA’s landmark approval of risperidone for the treatment of ASD represented a significant breakthrough for the autism community. Since then other large-scale autism studies have sought FDA approval for drugs that target core or associated symptoms for autism, but unfortunately few of these trials have proven successful. In 2009, taking a cue from other disorders such as ADHD where a combined effect of both medication and behavioral therapies has proven fruitful, researchers published the first successful combined randomized controlled trial for ASD. The paper in the Journal of the American Academy of Child and Adolescent Psychiatry demonstrated that combined pharmacological and behavioral treatments was more effective than pharmacological treatment alone for reducing challenging behaviors.
Risperidone is approved for reducing aggression and irritability in children and adolescents with autism. However, its use still presents a number of challenges to clinicians. Like other atypical anti-psychotics it can have adverse side effects including weight gain, potentially leading to increased risk for obesity, and GI symptoms such as diarrhea and constipation, which can already be problematic for children with ASD. Clinicians must therefore balance the benefit of treating the problem behaviors with the potential for creating new health challenges for the child. On the other hand, behavioral therapies have been shown to be one of the most reliably effective treatments for improving problem behaviors with limited side effects. Combination therapies create a synergistic therapeutic environment in which medication allows a child to get more from behavioral therapies and, at the same time, the benefits of behavioral therapy may mean lower doses of medication are required.
A new multi-site study by the Research Units on Pediatric Psychopharmacology Autism Network, the same group that conducted the pivotal studies leading to the approval of risperidone, investigated whether combining risperidone treatments with a simultaneous behavioral intervention would be more effective than medication alone. Their 24-week study of 124 children ages 4-13, compared a treatment regime of risperidone alone with a combined treatment regimen of risperidone and a parent training program that followed the principles of applied behavioral analysis. While both the combined and medication-only treatments reduced the severity of non-compliant behaviors, the combined therapy resulted in a significantly greater reduction while using lower doses of risperidone. The combined therapy was also better at reducing other challenging behaviors, such as irritability and hyperactivity.
This study provides hope for a wider range of available treatments and greater flexibility for clinicians who should be encouraged to use combined approaches in cases where medications or behavioral interventions are not effective on their own. Confirming the effectiveness of coordinated treatments that take full advantage of the benefits of both pharmaceutical and behavioral approaches also demonstrates the continued need to support research establishing the most effective treatments in all realms. Finally, the vast majority of clinical trials conducted to date have only addressed how an individual treatment compares to a placebo. Very few studies have been conducted that make head-to-head comparisons of two or more treatments as was done here, so the success of this trial will also serve to highlight the utility of “comparative effectiveness trials” for determining the best treatments for ASD.
Did you know?: Autism Speaks’ funded Interactive Autism Network (IAN) is a web-based family registry and social network that brings together thousands of families with autism research and provides a forum for families to report information about their experiences. In a recent study on over 5000 children in IAN, 35% of parents reported that their children were taking at least one psychotropic medicine and the use of these drugs increased with age. The incidence of a comorbid condition such as seizures, ADHD or anxiety increased the likelihood of medication use. The IAN authors also reported on correlations between insurance access and use of multiple medications, noting that those children using public insurance plans (such as Medicaid) tended to be on more medications, possibly due to an inability to get coverage for behavioral therapies.
Curemark CM-AT Autism Treatment Granted FDA Fast Track Status (Rye, N.Y.)
Curemark LLC, (www.curemark.com), a drug research and development company focused on the treatment of neurological diseases, announced that its CM-AT autism treatment, now in Phase III clinical trials, has been designated as a Fast Track drug by the U.S. Food and Drug Administration (FDA). Read more.
Portable, practical learning (Allentown, Penn.)
For 29 years, Deborah Hartman spent her days in the classroom, working with special education students. Read more.
SJSD sees drop in students with mental health care needs (Canada)
The total number of students with mental health issues in the St. Joseph School District has dropped in a year’s time. But certain areas have grown, while others have declined. Read more.
Limiting restraint on disabled students (Orlando, Fla.)
One child felt the snap of bone as her arm twisted behind her back during a tightening bear hug. Read more.
School for children with learning, behavioral needs marks milestone (Indiana, Penn.)
Milestones Achievement Centers and Milestones Community Healthcare – leading providers of private schools and services designed to help children with serious and complex behavioral and educational challenges – have changed their name to New Story. Read more.
Insurance Mandates May Hurt Businesses (HartfordBusiness.com)
State lawmakers want health plans to offer expanded coverage for more than six new medical conditions, stirring concerns that small- and median-sized businesses will take a financial hit that they can’t afford. Read more.
Living with autism (Neosho, Mo.)
In both the Missouri House and Senate, pending legislation would require insurance coverage for children with autism. Read more.
Tiger moms want autism covered by health insurance (Dayton, Ohio)
Here’s a warning to the Ohio Senate, especially the Republicans who run the place and decide what gets passed and what gets ignored: The tiger moms are coming after you. Read more.
Health bits: New autism website will give support (Ireland)
A new website, autismsupport.ie, aimed at giving information on autism, has been set up. Read more.
Museum opens its arms to children with autism (Cherry Hill, N.J.)
Kim Marple knew just how to gauge how much fun her 6-year-old had Sunday evening at the Garden State Discovery Museum. Read more.
Kids take to stage, tackle challenges (Milford, Conn.)
Debra Marchese envisions a red curtain as the backdrop for her students’ Broadway-themed show, so while they’re working set design, she tells them, “Just cover it in red paint.” Read more.
Training gives officer tips on dealing with autism (Boardman, Ohio
Family members or caregivers of people with autism can help educate police in the best ways to interact with those who have the disorder. Read more.
Borrowed Freedom hopes to help special needs individuals (Endicott, N.Y.)
A new organization is hoping to assist special needs individuals by giving them some experience on a farm. Borrowed Freedom is a horse and farm-based therapy program. Read more.
Getting to work (Tracy, Calif.)
Most mornings at Barista’s, a bustling downtown cafe, a line snakes around tables and workers rattle off regulars’ names. Read more.
McKinnon gets a date for ‘final’ appeal (UK)
Pentagon hacker Gary McKinnon and his legal team have been given three months to prepare for a judicial hearing on whether the Home Secretary proceeded correctly in allowing extradition proceedings to proceed in spite of dire medical warnings. Read more.
Sunday Journal: Autistic sibling redefines normal (San Antonio, Texas)
Where was that coming from? Nose twitching, I attempted to identify the peculiar scent. The blades of the fan made a faint whirring sound, making it hard for me to concentrate. With the flip of a switch, the blades halted, leaving me with the silence I craved. Read more.
Life Among the ‘Yakkity Yaks’ (WSJ.com)
‘Who do you think made the first stone spear?” asks Temple Grandin. “That wasn’t the yakkity yaks sitting around the campfire. It was some Asperger sitting in the back of a cave figuring out how to chip rocks into spearheads. Without some autistic traits you wouldn’t even have a recording device to record this conversation on.” Read more.
AUTISM SPEAKS NEWS
Grandmother’s Love Could Bring More Autism Awareness (Midessa, Texas)
An Odessa grandmother is trying to bring more awareness to a disorder plaguing families here in West Texas – autism. She told NewsWest 9 it’s the love of a grandson that inspired her. Read more.
Autism Speaks’ Co-Founders, Bob and Suzanne Wright, have been named to the Palm Beach Elite Top 100 Philanthropists List.
BOB AND SUZANNE WRIGHTWhy: Before Bob and Suzanne, families of autistic children had no advocates. The Wrights changed that when they founded Autism Speaks, the first organization to address what is now a widespread affliction of children. In addition, Bob has worked with the Archdiocese of New York to raise money for inner-city Catholic schools and is active with the Damon Runyon Cancer Center, New York-Presbyterian Hospital, and the Society of New York Hospital Inc. Suzanne’s other past charitable interests included the Make-a-Wish Foundation, the Laura Pels Foundation, the Inner-City Foundation for Charity and Education, and the Champions of caring Project. In 2008, the couple was named to the Time 100 list.
Check out coverage from the Palm Beach Daily News (“The Shiny Sheet”).
Retired president of NBC; executive
5|25: Celebrating Five Years of Autism Science Day 21: Toddlers with autism are drawn to movements that are highly synchronized
In honor of the anniversary of Autism Speaks’ founding on Feb 25, for the next 25 days we will be sharing stories about the many significant scientific advances that have occurred during our first five years together. Our 21st item, Toddlers with autism are drawn to movements that are highly synchronized, was originally reported in our Science In the News in 2009.
In its March 29, 2009 issue, the prestigious journal Nature reported on an autism study that focuses on the toddler response to biological motion. Researchers from Yale University found that young toddlers with autism are not sensitive to biological motion, or all movements made by people including facial expressions, speech and gestures. The study, funded in part by Autism Speaks, helps explain why young toddlers with autism often do not make eye contact or pay attention to what others are doing. Instead, toddlers with autism are drawn to movements that are highly synchronized, which is not characteristic of most human movements.
“Since infants as young as two days old are sensitive and pay attention to biological motion,” said Dr. Geri Dawson, chief science officer for Autism Speaks, “these findings could potentially be useful in detecting infants at risk for autism very early in life. It is important to use therapeutic strategies for children with autism that help draw their attention to people, including their facial expressions, and gestures.”
By providing very early intervention, doctors and therapists may be able to influence the trajectory of brain and behavioral development in children with autism so that a more typical development occurs and symptoms of autism are reduced.
Read an NIH press release on the study.
Did you know?: Another Autism Speaks-funded study published in 2009 discovered unusual sensory-motor features of children with autism. Researchers from the Kennedy Krieger Institute and Johns Hopkins University School of Medicine examined motor patterns in children with autism. The findings, published in Nature Neuroscience, suggest that children with autism appear to learn new motor actions differently than do typically developing children. To learn new patterns of movement, children with autism relied much more on their own internal sense of body position (proprioception) rather than visual information coming from the external world. Furthermore, researchers found that the greater the reliance on proprioception, the greater the child’s impairment in social skills, motor skills and imitation.
If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.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.
5|25: Celebrating Five Years of Autism Science Day 20: Later Language Acquisition in Nonverbal Individuals with Autism
In honor of the anniversary of Autism Speaks’ founding on Feb 25, for the next 25 days we will be sharing stories about the many significant scientific advances that have occurred during our first five years together. Our 20th item, Later Language Acquisition in Nonverbal Individuals with Autism, is from Autism Speaks’ Top 10 Autism Research Events of 2009.
A common belief of many parents and clinicians is that, if a child with ASD has not developed communicative speech by 5 years of age, the prognosis for future development of speech is extremely poor. In 2009 scientists challenged this belief by conducting a comprehensive review of the research literature to search for reports of individuals who were reported to have acquired speech at age 5 or older. Remarkably, one-hundred sixty-seven such cases were identified, changing the way in which we view language development in individuals with ASD.Early theories of brain development held that the period before age 5 represents a unique time in development during which language acquisition is possible, a critical period for language. Yet, recent longitudinal neuroimaging research has shown that the brain has a prolonged development, with major changes occurring during adolescence, and we now know that the capacity for neural generation extends even into adulthood. While the field of neuroscience has revised its notions of neuroplasticity and development accordingly, the field of ASD has held onto the notion of an early critical period for language acquisition. This paper published in the Journal of Cognitive and Behavioral Neurology, however, provides a very different perspective.
The authors identified in the published literature 167 individuals with ASD who used speech for the first time after age 5. Many of these children had been offered language intervention based on either traditional or naturalistic applied behavior analysis during the elementary school years, with the intensity of intervention ranging from 30 minutes/week to 30 hour/week. Others had been taught sign language or provided with Picture Exchange Communication System (PECS) training, computer-based training, or speech-language therapy. Children who developed phrase speech were found to have been in treatment longer than those who only achieved single word speech. In virtually all cases, significant time and effort put into treatment was necessary for speech to develop. According to their records, many of these children learned to “use phrases,” “answer simple questions,” “make spontaneous requests,” use “complete sentences,” and “speak in spontaneous, complex sentences.”
Although the age at which speech developed was variable (ranging from 6-12 years), once the child began speaking, subsequent improvement was often quite rapid. This suggests that achieving initial sound production and words can provide an important springboard for the development of subsequent speech. This important paper offers hope for the many children who have not yet developed speech by age 5, dispelling the belief that older individuals with ASD cannot respond well to speech interventions and providing a much more positive prognosis for individuals with ASD.
Did you know?: Autism Speaks’ High Risk High Impact Initiative chose “non-verbal” autism as one of its high priority research areas and has funded several grants in the area, including a novel treatment intervention to develop communication skills in non-verbal children over the age of five (to read more, please click here). Autism Speaks also partnered with the National Institute of Child Health and Human Development to assemble a group of experts focusing on language, development, and autism to evaluate the efficacy of treatment interventions that target acquisition of spoken language. This resulted in a consensus set of recommended measures published in the Journal of Speech-Language-Hearing Research. These measures define benchmarks for determining a child’s language level and will be used to establish a framework for comparing outcomes across intervention studies.
Since our son was diagnosed more than 16 years ago, we’ve been part of a powerful learning experience full of some of the highest highs and lowest lows any parent can experience. At every age, our family and millions like us struggle with the answers to basic, immutable parenting questions such as, “what can I do to best support my child?” These questions become even more complex as our children enter adulthood and we wrestle with the looming question of, “who will care for my adult child when I’m no longer able to do so?”
A few years ago, the Southwest Autism Research & Resource Center (SARRC), in collaboration with the Urban Land Institute (ULI) and Arizona State University (ASU), began studying more than 100 residential programs throughout the U.S. and beyond, looking for best practices. We also explored opportunities for scalability and replicability within the fabric of urban and suburban communities, close to where families live. Further, we evaluated the financial catalysts needed to develop true public-private-nonprofit collaborations to create residential options that are part of a healthy community’s housing plan. We’re pleased to share these findings through our new study, Opening Doors: A Discussion of Residential Options for Adults Living with Autism and Related Disorders.
With more than 500,000 children entering adulthood within the next 15 years, we need to be assured that our adult children are able to live out their lives in comfort and safety, engaged in productive meaningful jobs and experiences that promote independence, and are part of communities that accept, understand and respect their differences.
We recognize that none of us can do this alone. The challenges are too large. The stakes, too high. Waiting is not an option. We must advance plans for the development of long-term residential housing for those individuals living with autism and related disorders, who are unable to live independently and who need support. And we need to advance those plans now.
SARRC is proud to serve as a partnering organization of Advancing Future for Adults with Autism (AFAA), which is bringing our autism community together, promoting a collaborative spirit and developing the public policy needed to create more accepting and inclusive communities.
Our son Matthew, now 18, has four years left in the public school system. That’s four years to achieve our goal of empowering him to become part of the workforce and to someday live on his own. In the early years, we thought we’d have so much time to get him on track. There would be time to provide him with thousands of hours of therapeutic interventions. Time for science to advance and identify the causes and cures. Time for him to outgrow his autism. Time for a miracle.
While we may not have reached all our goals, SARRC, Autism Speaks, AFAA and our partners are continuing to make progress toward building meaningful futures for our children and adults – futures that include friends, jobs, homes and communities that support and value them. Please join us in this journey.
This guest post is by Denise D. Resnik, SARRC Co-Founder and Opening Doors Editor.