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You may have seen it. The headline that says, “super-parenting improves children’s autism.” Besides being grammatically incorrect, it’s insulting. The implication, of course, from the headline is that parents who do not have super abilities or super skills ,can’t help their child. It sets an unhealthy expectation for parents who are already struggling to help their child. Worse, based on the feedback I have received, it has been hurtful to many parents.

If that wasn’t bad enough, the article headline went viral and the text itself doesn’t even properly represent the study it reports on. It’s time to set the record straight about the findings.

The scientific findings, published in the journal Lancet, described a follow-up of families who participated in an early intervention study published a few years ago.  That study used what is considered the gold standard of treatment research, a randomized clinical trial and the results were taken very seriously by the autism community. While the intervention focused on improving communication and did improve interaction between parents and children, it did not improve autism symptoms so the researchers concluded that it was not helpful. It wasn’t that it did nothing; it just didn’t do what they had hoped it would. Other studies, on the other hand, had shown that similar type interventions improved autism symptoms in the first few years after a long-term intervention.  So the door was not shut on these parent – delivered interventions.

Based on the promising but non-significant findings of the original studies, the original researchers were not going to give up.  They kept following these toddlers through school age to find out if intervention during this crucial developmental period of toddlerhood was able to produce improvements over the long run. Remarkably, it did. What was not seen immediately following a year long intervention was seen six years later. The results showed improvement in social communication and repetitive behaviors, which is huge to families. This was not a reversal, not a cure, but some of the the strongest evidence to date that supporting social communication in toddlers with autism changes the trajectory of autism symptoms over the long term.

The parent component was used because these toddlers spend most of their time with their parents. The skills that they learn at these early ages need to be generalized as much as possible so they need to be delivered in different settings: home, bedtime, bath time, at the grocery store, it’s an around-the-clock process. Because parents are involved, the findings of parent-mediated interventions do not mean that most parents are normally doing anything wrong. Or that without this specialized training to help their child, they are useless. It means that during preschool, intervention needs to be intense. It needs to be done in multiple settings. Clinicians can only do so much. Teaching parents to work on skills with their toddlers is crucial. Parents may think they know it all, but they don’t. They need help. They have all sorts of different situations with work, home, other children, family members and living situations. That doesn’t make them less than super. It makes them human.

One of the things that continues to push lawmakers and insurance companies towards coverage of these interventions is whether or not the gains made directly at the end of the intervention period can be maintained later. This is only done through a longitudinal design where a person is followed for many, many years. They are rare but they have been done. The important findings of the study published recently were that the improvements seen right after the end of the original study were sustained six years later. These improvements were seen in social communication, as well as in repetitive and restrictive behaviors, i.e., the core features of ASD. Early intervention can make a lifetime of difference. This is the first study to demonstrate that using this type of research design, which clinicians tend to take the most seriously. That’s a powerful message and it shouldn’t be lost underneath terrible headline language.

– Dr. Alycia Halladay, Chief Science Officer of the Autism Science Foundation

The Autism Sisters Project seeks to understand why four times as many boys are diagnosed with autism vs. girls. This terrific video was produced by Bill Shea. To learn more, visit www.autismsistersproject.org. To participate, Give a Spit!

ASF Sisters Project from Autism Science Foundation on Vimeo.

preschool-children-smilingIn 2009, the government began a massive effort to collect environmental, genetic, psychological, sociological, educational and other developmental information from 100,000 people from before conception through age of 18. This effort, called the National Children’s Study, or NCS, was an incredibly important, but also a very expensive and labor-intensive study. Collecting information on the same person across development is the gold standard in understanding early markers of disorders like autism, developing strategies to alleviate suffering at different stages of development in childhood disease, and preventing certain life threatening diseases like cancer.

In 2014, the study was shut down after about 5000 people had enrolled. An expert review group had advised the head of the NIH that the methodology used was going to be way too expensive, and entirely too cumbersome. But the NIH still wanted to support longitudinal studies and created a mechanism so that it could be done another way. They took the money that was set aside for the NCS, and applied it to support the extension of existing cohorts. In this way, existing families that had only been interviewed once could be re-contacted again to become longitudinal studies. Additionally, money could be applied to add on to studies so that additional biosamples or behavioral measures could be collected and analyzed.

Earlier this week, the NIH announced the recipient of these awards, which are collectively being called Environmental influences on Child Health Outcomes, or ECHO. In addition to the studies themselves, funding will go to a data coordinating center to make sure the studies are collecting similar measures and they can be put into a common database or repository. There is also money to analyze samples that are collected.

We are happy to announce three studies with relevance to autism that were funded through this mechanism. First, Drexel will lead 14 sites to analyze the baby teeth of 1,713 siblings of children with autism. About 20% will end up with an autism diagnosis, but a high percentage of them who don’t have an autism diagnosis have a developmental concern like language delay or ADHD.   They will collect the baby teeth of these siblings, which parents normally save. Researchers can look at the layers of teeth much like botanists can look at the rings of a tree and tie an environmental exposure to a particular window of development. These baby teeth, together with genetic samples collected from the families, will be used to better understand environmental risk factors and genetic influences of ASD.

children-playgroundIn another study, Kaiser Permanente in California will capitalize on blood samples collected and analyzed to detect the presence of endocrine disrupting hormones during pregnancy on pregnancy outcome. Originally, the study ended the participation of the families before neurodevelopmental markers could be assessed, but now, through ECHO funding, these kids can be followed up and assessed for a variety of outcomes. They include, but are not limited to, neurodevelopmental outcomes like autism spectrum disorders. In addition to investigating risk of prenatal exposure to endocrine disruptors, epigenetic analysis of samples collected will be done to better understand genetic and environmental interactions and associations.

Finally, the CHARGE or Childhood Autism Risks from Genes and Environment Study, has ben enrolling children since 2003. The last time the children were seen was at the time of autism diagnosis, from age 2-5 years of age. Symptoms of autism change over time, and leaders of the study will be using funding to re-contact CHARGE participants as they reach adulthood. They will assess these individuals at older ages for attention deficit or hyperactivity symptoms; changes in cognitive or adaptive function; changes in severity or diagnosis; and symptoms of anxiety or depression.  The new study, called ReCHARGE, is expected to have information on 1,440 individuals with autism or developmental delay. Again, this was not possible without the ECHO funding.

Together, these studies will help researchers better understand the causes of autism spectrum disorders, the link to other diseases and disorders, and of course the life course of people with autism. Thank you to the NIH for providing the support which made these projects possible. If you want to learn more about ECHO – you can find information on the NIH website: https://www.nih.gov/echo.

Autism Science FoundationBlog written by Cindy Everson

I remember vividly our drive to the neurologist with our 12-month-old son, Shane, in the back seat. We had been referred by his pediatrician due to the fact that he was not walking or crawling yet. As we approached the office my husband said, “It’s going to be fine.” Well, it wasn’t. With careful monitoring, about 18 months later, he was formally diagnosed with autism. Our second son, Joe, was diagnosed with autism at 20 months.

Our life became filled with behaviorists, in-home therapists, speech therapists, occupational therapists, neurologists, special education and much, much more. The days were hectic but the real challenge was dealing with and managing the obsessive behaviors and meltdowns that often happened. At times we felt very isolated from the rest of the world. Our kids could not participate in the activities most kids did, T-ball games, birthday parties, sleepovers. Even a simple meal at a restaurant was too difficult for them and us.

Shane and Joe are now 19 and 16 and enjoying a happy and healthy life. They participate in Special Olympics, love Disneyland and riding on our ATVs with their dad. Our oldest loves trains and our youngest loves asking people he meets about the cars they have owned! Our life is not without challenges and struggles and we continue to rely on our faith, family and friends for strength and support. It is often difficult for us as parents to know that there is much our children will not experience. Our life is still very different than those around us, as now our friends’ children are going to college, graduating from college, getting married and having children.

We were inspired to start a nonprofit organization called P.A.R. 4 Kid’s Sake in 2002, which raised over $1 million for autism research and local services. Now, we are inspired to make a difference by registering with the Autism BrainNet. This is a program that collects post-mortem brain tissue from people affected by autism. This resource is essential to help scientists understand the amazing brains of people with autism. For example, researchers just discovered that the number of traffic directing cells called “interneurons” that help connect different cell types are reduced in autism. This could explain why some people with autism, like my son Shane, sometimes feels overwhelmed with information. Also, there are differences in cell numbers in the area of the brain called the amygdala. This area is involved with brain circuits that control fear and anxiety, and future interventions that target this difference could help these behaviors and improve social interaction. Without knowing about the brains of people with autism, scientists will never understand the brains of people with autism.

We feel confident that someday these efforts will bring answers and we would love nothing better than to have our children be able to contribute and be a part of this. We encourage you to sign up to learn more by clicking here. There is no obligation be a donor, but you will receive updates and a newsletter with valuable information for families.

With gratitude,

Cindy Everson

Like the Autism BrainNet on Facebook, and follow along with us on Twitter.

This blog is reposted with permission from the ASA San Francisco page.  It is written by Steven Prutsman, board member of ASASF and co-founder Autism Bay Area Fun.   It outlines his opinion on the differing needs and advocacy priorities for individuals on both sides of the autism spectrum.

At the end of a keynote speech at this summer’s national Autism Society of America conference, authors Caren Zucker and John Donvan implored the audience to quell the infighting among various autism advocacy factions. (Rodney King’s “Can’t we all get along” immediately came to my spectrum-y mind).Their point was that instead of squabbling among ourselves, we should be working toward the same objective: a better quality of life for all on the spectrum, so that all autistics may be safe, happy and thriving.

Their wonderful book “In a Different Key” touches on the fact that throughout its history, the word autism has lacked a clear and universally accepted definition, unlike many other conditions. Instead, the autism spectrum covers a multitude of differences. On one extreme, what I’ll call Camp A, are those who are independent, but different and quirky. Some leading self-advocates are in this group and some have described geniuses like Nicola Tesla, or even Socrates, as falling under this umbrella. And way on theother side, Camp B hosts the severely developmentally and cognitively impaired, the non- or semi-verbal, those with a host of often painful co-morbid conditions. And of course, there are myriad variations within and between these two extremes, each adding their own flavor to the word “autism.”
 
For those of us closer to Camp A the autism label has an almost philosophical meaning, a description of how we process the world, of an identity we have embraced. “I got to be me,” we say. “Accept me for who I am, with all my quirks.” “Support me with the accommodations I need.”  “Woe to those who use the A-word to describe in a negative way a severe disability.”

Others, in particular the parents of the Camp B, or classic autism, have seen their children and families suffer beyond measure as a result of the demands of autism. Head-banging, self-injury, heart-wrenching scenes of agony and tears: these are not “Rain Man” moments. These are bona fide PTSD parents, with stress levels like combat soldiers—always on guard, waiting for the next crisis, the next aggressive, injurious and bloody episode; parents who have dedicated their lives and savings to a myriad of medical interventions, therapies and care-giving.

They advocate for their children because their children often have no or limited spoken language and cannot do so themselves, and worry constantly for their children’s futures, their long-term housing and care. “Autism is a debilitating disability, not simply a quirky difference. Woe to those who put a cute and cuddly face on all of those excruciatingly painful moments, days and years we and our children have endured,” they say, exasperated.

In Camp A there are various unique personalities. In Camp B, the unique personalities are coupled with substantial developmental challenges. Camp A sees attempts to prevent, or treat autism as a form of judgment, a direct attack on the intrinsic self-worth of its members. Camp B sees the “embrace and celebrate autism” dogma as simplistic, demeaning, and lacking empathy for their families’ enduring painful struggles.

The medical and scientific communities are currently struggling toward clarity on how to draw lines and labels around the various forms of autism, meanwhile leaving those of us in the trenches with no choice but to make our own definitions, and tailor our advocacy efforts to where we or our loved one fit within theextremely diverse population that is currently broadly labeled as autistic.

“Full employment at a competitive wage for all autistics” becomes a priority for Camp A, while “Assurances that our severely developmentally disabled sons and daughters will be well cared for, and those without language and a voice will not be abused after we’re dead” becomes the plea from the other side. Why so different? Because, fundamentally and quite obviously, we are talking about extremely different underlying conditions, and not just one. The blind and deaf have different terms, not just a lumped-together “sensory input disorder.” We in the autism world have no such luck, yet. We are still lumped together, despite having such vastly different conditions and needs.

Until the folks of the DSM (Diagnostic and Statistical Manual of Mental Disorders) come out with a better labeling system for the autism varieties, it seems unlikely the bickering and polarization will go away: everyone will continue to think of the A-word as it relates to their own experience, and advocate accordingly.

Meanwhile perhaps the best thing we can do is to simply recognize these differences and not get into each other’s way. Parents of the severely developmentally disabled should not involve their time and resources in fighting against efforts to improve the lives of those of us for whom autism is a positive identity. And those in that camp should not spend their time attacking efforts of parents who labor to help their children.

Zucker and Donvan were right: autism infighting is unnecessary, we are wasting our precious time skirmishing over a fluctuating lexicon. So until the day our vocabulary catches up with the diverse biological, neurological, and functional realities that lay underneath the A-word, take off the gloves, and give each “autism” story the respect it deserves.

Stephen Prutsman is a concert pianist, composer, member of the Autism Society San Francisco Bay Areaboard, and co-founder of Autism Fun Bay Area, a nonprofit providing concerts and recreational events for special needs families. He lives with his family in San Francisco.

Preface:  Recently, the practice of Applied Behavioral Analysis, or ABA, has come under fire in the autism blogosphere for being abusive and manipulative with the purpose of mind control.  Instead of defending the practice, or pointing out the factual errors in recent articles, ASF realized the most productive way to address some of the issues is to reprint an editorial written by expert clinician Aubyn Stahmer, PhD.  The editorial first appeared in the journal Autism in 2014.  Please take time to read it below.  Thank you to Dr. Stahmer at UC Davis for this original article and for allowing it to be reprinted here.

In this issue of Autism, we are pleased to continue our “Myth Busters” series designed to provide a forum for discussion of common misconceptions in our field. This month, we examine the idea that applied behavior analysis (ABA) is synonymous with discrete trial teaching; we will also explore the false dichotomy between behavioral and developmental approaches to treating autism spectrum disorders (ASDs).

It is common practice for intervention researchers to state that ABA has the highest level of evidence of any intervention to support its effectiveness for children with autism. This view is supported in recent reviews by the National Autism Center (2009)and the National Professional Developmental Center for Autism Spectrum Disorders (Odom et al., 2010). The National Autism Center authors concluded that over 90% of the published studies reviewed relied on intervention strategies or comprehensive models based on behavioral principles (Suhrheinrich et al., in press). Evidence supporting ABA also has led to increased coverage for ASD services through both public service and insurance agencies. In fact, at least 37 states have laws that mandate coverage of autism services (http://www.ncsl.org/research/health/autism-and-insurance-coverage-state-laws.aspx). There are, therefore, urgent policy implications that necessitate a clear and accurate understanding of what is included in ABA.

Unfortunately, interpretation of the available research has led to a very narrow view of what is considered effective intervention for individuals with ASD and what ABA means (Dillenburger and Keenan, 2009). In fact, ABA is not a specific type of teaching but rather a particular approach to scientific inquiry, characterized by certain research designs (Cooper et al., 2007). The use of ABA has identified effective interventions for a wide variety of individuals to address an even wider variety of behaviors. Unfortunately, this generality has been all but lost. When people refer to the intervention received by a child with ASD as “ABA” or as “applied behavior analysis,” they typically are referring to a specific, highly structured form of behavioral teaching more appropriately referred to as discrete trial training (DTT; Chiesa, 2005). DTT was first described in the 1960s and was the first specific intervention shown to be efficacious for children with ASD (Schreibman, 1988). It is more correct, however, to describe DTT (and other behavioral interventions subsequently developed) as a product of the science of ABA. That is, ABA allowed for the identification of the specific principles that comprise DTT and other behavioral interventions. This misunderstanding and misuse of the term ABA hinders the ability of service providers, funders, and parents to fully appreciate the full potential of ABA and utilize its enduring principles. Just as crucially, it may limit access to effective interventions for individuals with ASD.

Fully understanding the range of interventions based on ABA is essential, as technique should be determined by the needs of an individual with ASD, the behavior or skill being addressed, and the context in which the intervention is implemented. Research points to the inadequacy of one single treatment approach for all areas of learning for children with ASD (National Research Council, 2001Schreibman, 20002005), or for all children with ASD (Stahmer et al., 2011b).

While DTT was one of the first behavioral interventions to show effectiveness with children with ASD, the field has evolved significantly since that time and now includes a variety of interventions, ranging from highly structured programs that require one interventionist for each child, to behaviorally based inclusion programs that involve typically developing children as models (e.g. Odom et al., 2010Vismara and Rogers, 2010). Many of these interventions have been developed (via ABA) to specifically address short-comings of traditional DTT, including limited generalization and maintenance of skills. Some ABA-based programs are distinguishable by “brand names,” such as DTT and Pivotal Response Training (PRT), while other programs utilize the principles of ABA broadly. Some programs address specific behaviors such as toilet training or aggression while others are comprehensive, intended to address a range of learning domains or complex behaviors (e.g. social skills). There has been particular growth in naturalistic behavioral strategies, which use the principles of behavior analysis but also incorporate techniques influenced by developmental theory.

Similar to the limited view of ABA, there is confusion in the field regarding the relationship between developmental and behavioral interventions. Traditionally, there has been minimal communication and even animosity between developmental and behavioral “camps” around autism interventions. However, this hard line between approaches appears to be a false dichotomy in many cases. In fact, although the vocabulary and theory are different, developmental and behavioral interventions have many common features in practice. For example, child initiation of the teaching episode, the use of natural reinforcement, responding to a variety of behaviors as meaningful communication (loose shaping), and an emphasis on reciprocal interaction can all be seen in both developmental and naturalistic behavior interventions. As described by Ingersoll (2010), a lack of understanding of the underlying philosophies and evolution of interventions across fields has limited potentially fruitful cross-fertilization. This absence of collaboration and at times outright competition between advocates on either side has also caused a great deal of confusion for families and community providers who implement interventions for children with ASD. In many cases, this confusion limits access to a full range of intervention options.

A growing number of interventions straddle the divide and combine techniques from both developmental and behavioral interventions. Research on these approaches has shown promising results (e.g. Dawson et al., 2010Ingersoll and Wainer, 2013Stahmer et al., 2011a). These interventions highlight the utility of both models and reveal the pointless nature of the debate over which side is “best” for ASD. The heterogeneity and developmental nature of the disorder make it unlikely that one specific treatment will ever be best for all children with ASD, or will work for any one child throughout his or her educational career. Interventions that combine techniques from both developmental and behavioral backgrounds may offer “the best of both worlds” and the most comprehensive support for learning. It is imperative that we, as a field, begin to understand the range of effective interventions available and learn more about the specific active ingredients necessary to optimize outcomes based on individual characteristics of people with ASD, their families, and environments.

Aubyn C Stahmer
Editor

Acknowledgments

Special thanks to my colleagues Sarah R Rieth, Laura Schreibman and David S Mandell for helping to shape this editorial with their excellent comments and brilliant discussions around this issue.

References

  1. Chiesa M

By Alison Singer

I tend to judge people based on how nice they are to my daughter Jodie. It’s amazing how many people dismiss Jodie, ignore her or barely tolerate her because of her severe autism.  But no one was ever nicer to her than Suzanne Wright.  There was a time when I saw Suzanne almost every day, and almost every day she would ask about Jodie. When I didn’t see her, she’d email me to ask “Did she sleep?”, “How did it go with the new para?”, “Did she try the apricots?”. She knew all the details of her therapy, her schooling, even her clothing and food preferences. If she saw a toy she thought Jodie would like, she sent it to her. Her questions were never the perfunctory “How’s Jodie?” She genuinely cared.  And she cared about everyone’s child at this deep level. At Autism Speaks, at all the walks, wherever she went, she knew every child’s name, age, birthday, and favorite color. Her memory was astonishing.

This is why I have always found it odd when people criticized Suzanne for not caring about people with autism, when nothing could be further from the truth.  She, and I, have both said things we wish we could rephrase, but never with malice, and always with the hope of helping others understand that they were not alone in their feelings, whatever those feelings were.  Suzanne devoted the best years of her life to building autism awareness, creating a compassionate community, and turning a community of heartbreak into a community of hope.  She designed the now ubiquitous blue puzzle piece and made “autism” a household word. She focused not only on the children with autism but on their whole family, especially siblings.  I remember one afternoon she took her grandson and my daughter Lauren, the so called “forgotten” children, to the circus so that they could have a special afternoon away from the “parade of therapists”.

Suzanne’s tremendous presence, her work and her spirit have made an indelible impression on those fortunate enough to have known and worked with her. I know I will think of her often, and will try to emulate her extraordinary compassion, though I know I will never come close. All I can do is thank her for loving my daughter, and all our children, and thank her family for sharing her with our community.
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