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The following is a transcript from the November 14th ASF science podcast, by Alycia Halladay, PhD

I had a podcast slated for today that outlined potential for biomarkers in autism. It was a follow up to last week’s oxytocin podcast. But then we had the election on Tuesday and it seemed a little inappropriate to not at least acknowledge that things are going to change in a big way, at least our new President wants them to, so there will be movement. I don’t know who you all voted for and this is not intended to bash Trump, but I think it would be useful to at least comment on some of the changes that could take place under a Trump presidency that are related to autism.   I’ll keep my comments short and to the point . I don’t think any person with autism or without autism voted for Trump because the rights of the disabled were their #1 concern.   This summary isn’t anti-Trump, it is “pro autism families who deserve to know what is at stake”.

Because he hasn’t necessarily been specific, I’m going to base my thoughts based on what he has said, not what the press has said, or what pundints have said for that matter.  I’m using his Contract With The American Voter as a guide.

Let’s start with autism or helping the developmentally disabled. He does not have a specific plan for autism, other than he has publically stated that he thinks vaccines cause autism and has been very vocal about that. He has not commented or made any statements about anything related to autism, such as the NIH budget, expansion of services or supports for people with disabilities. These are things that Clinton did lay out, but Trump has not.

From here on in I’ll focus on what he has said or policies he has endorsed that will affect the lives of families with autism.

Immediately he has said that he will add an additional federal investment of $20 billion towards school choice. This will be done by reprioritizing existing federal dollars. This is school vouchers. So instead of improving our existing schools and programs that need help, he will redirect money to fund the education of individuals at other schools. The problem with schools is overcrowding and lack of teacher incentives as well as training. Vouchers don’t solve that – so take that for what it is worth.   This could very well affect those individuals with autism who receive supports and services through their public schools, like my daughter. He also hates common core so much he has said he is going to get rid of the Department of Education. On of his first 100 days will be to hire someone to transition the Department of Education. Essentially, he wants to basically get rid of any oversight on education. I would argue that without some oversight and laws, schools are driven by money.   The ones that get left behind in this process are those that cost the most money – in other words, those with special needs.

Second, in his words, he will “Repeal and replace Obamacare with Health Savings Accounts (HSAs)”.  OK, love it or hate it, the Affordable Care Act (not Obamacare, by the way) put in place efforts to improve screening and diagnosis for ASD, improve services through patient navigators, and got rid of preexisting health care conditions that might have hindered insurance coverage. This means for the Americans that receive health care coverage for their child’s behavioral interventions through ACA insurance coverage, services will be cut or lost. He has a plan for private health care accounts and he identifies where Medicaid is lacking. However, his plan for Medicaid is to offer block grants which are discretionary. Instead of matching state dollars, block grants offer a lump sum and let states decide if they even want to contribute. Which let’s face it, the answer is going to be likely NO which means services will be cut. This isn’t a biased opinion, this is the general consensus of health care economists. Unlike current Medicaid rules, it doesn’t guarantee coverage for anyone.   Under a house republican plan for block grants last year, this plan would CUT $1 Trillion from Medicaid over a 10 year period. That would not only hurt the chance of people waiting for supports, it would result in cutbacks to those receiving care. But a democratic president, Obama, would haven ever let it through, so it was just a plan. Now with a republican president who has flat out said he is going to offer block grants to the Mediciad system, it will likely go through. Many people with autism are supported through Medicaid. I hope he keeps his commitment to Social Security in making sure it is not an entitlement and should be used to help those have a safety net who cannot do for themselves.   If he does, OK. However, he has specifically cited fraud in disability as a major issue and he has said he is going to tackle it. According to his calculations, one in 20 americans claim a disability. He says that is too much, but a separate database, the US Census Bureau, put that number actually one in 5 having some sort of disability. So based on those numbers, less people are claiming a disability than have one. Again, maybe there are people that don’t have a disability or have whiplash after getting bumped by a car or something, but I hope he does not use this as a way to cut disability payments or eligibility for those who are truly in need.

Third, which is actually second on his Contract with the  American Voter, is the institution a hiring freeze on all federal employees to reduce the federal workforce through attrition. This exempts: military, public safety and public health. That last one is key. Who is “public health”? Is he going to stop hiring health care workers at federal institutions like the NIH? Is he going to hire or get rid of some departments like the Department of Education, the Department of Health and Human Services? I mentioned he is planning on getting rid of the Department of Education because he doesn’t like common core and thinks that should be a decision left to the schools.  What does he see as public health? If he is going to call for a hiring freeze, he needs to be more specific.

Fourth, he wants to remove barriers to entry into free markets for drug providers that offer safe, reliable and cheaper products. He says that congress will need the courage to step away from the special interests and do what is right for America and that slowing consumers access to imported, safe and dependable drugs from overseas will bring more options to consumers. I just quoted him there.

So this all sounds good in theory, and I’m all for making more treatments available for more people. But one of the areas of government he’s targeting is the Food and Drug Administration, or FDA. The FDA, while it does have flaws, provides an important service. They closely examine the efficacy and safety of medical compounds like drugs and devices so that people are not getting cheated or harmed. Removing some barriers is fine, but I think what he means is removing regulatory barriers, which are there for a reason.   This may open the door for unregulated, untested, and dangerous treatments that prey on desperate families. Without rigorous evaluation, which will be paid for by insurance?   This is a big question with a huge need for answers. Without regulation and oversight, it will be the wild-wild-west in terms of selling snake oils and fake treatments to families who are the most desperate in need, and the least educated, on what does and does not work.

On the bright side, he does say that he wants reform of mental programs and institutions in this country. “Families, without the ability to get the information needed to help those who are ailing, are too often not given the tools to help their loved ones”. I think we can all agree on that. His stated motivation for that, however, is to deflect the responsibility for gun violence towards those who have easy access to guns with no business having one. He has shamelessly promoted the National Rifle Association and agreed with their illogical thinking about gun safety in the hands of  those with mental health issues. It doesn’t mean there can’t be gun regulation AND mental health reform.  But without a plan on how to improve mental health services for people it’s unclear what will happen. What does reform mean if he is cutting federal funding and reorganizing health care providing, and how is Medicaid going to play into it? Who is going to be in charge of these reforms? If Medicaid is cut, how are services for those with mental health issues who can’t afford them be paid for?

And it’s not just about money. I mean, it is sometimes, but sometimes it’s more important than money, like our environment, and our viability on this planet. He would like to deny climate change exists (and trust me, we would all prefer that global warming not exist either), but global warming is real, backed by science and research. It isn’t a theory. It is hurting our environment and hurting us. Trump has said publically and openly and again as part of his contract, that he will cancel payments to the UN Climate Change Programs and use the money to fix America’s water and environmental structure. Without the US buy in to the Paris Climate Accords, the agreements put in place will be unenforceable. His solution is to use the money to fix US water and environmental structure. Again, while I am all for fixing infrastructure, this is not a substitute. Climate change and toxic environmental exposures are not a local problem with local solutions. They are a global issue. This may be the most lasting legacy of the Trump administration. Whether you believe environmental exposures cause autism, or that they contribute, toxic environmental exposures harm human health.   Environmental toxins have been linked to everything from asthma, diabetes, yes autism (in conjunction with genetic factors), and in fact SOME disabilities are reduced with mitigation of environmental exposures.   Climate change is real – it has been scientifically proven. It is not a hoax made up by the Chinese. It will affect the air and water quality for not just future generations but THIS generation. Scientists have documented what will happen if the Paris Climate Accords are not instituted. What is even more troubling is that he is going to eliminate the federal department (EPA) that regulates toxic chemicals and their use.  I think he sees it as a waste of government time and effort and money.  So there really will be no checks and balances for US or foreign industry for how much chemicals they release or produce or test for safety. This is an incredibly sobering thought and we all hope he takes a breath and slows down and really thinks about the consequences of these things.

And now to the conclusion and the elephant in the room. Trump openly mocked a reporter with a disability. Whether you’ve watched some weak bizarre youtube video on a site called “catholics4trump” of the rebuttal of his actions or not, he did. Nobody listening to this podcast is dumb. He did, and it is clear that he does not see the rights of the disabled and the needs of their families as primary issues.   If you voted for Trump you voted for trump for reasons OTHER than he has the disability community in mind.

I hope everyone listening has had a chance to take a deep breath and as my friend David Mandell put it:  “Whatever you care about – alleviating poverty, ending hunger and sickness, loving the stranger in our midst, protecting the dignity and rights of those with disabilities or who are just different from us, ending racism, misogyny and sexism, seeing to the proper education of our children, guaranteeing the rights of our LGBT brothers and sisters – whatever it is, double down. Volunteer more, give more money, protest, educate others.” My addition is:  become more determined than you were before. There is good work to do, and we still can do it. Thanks David, and thanks to all of you for caring, no matter who you voted for.

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

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