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Early Intervention for Autism

Many parents of children with autism have expressed to me their dismay that the anti-vaccine lobby is sucking all the oxygen out of the room for autism awareness. They feel that just being a parent of a child with autism makes others assume that they are anti-vaccine. They also worry that resources and attention are being diverted from promising legitimate research because of all the attention being paid to the failed vaccine hypothesis.

So it is good to occasionally focus on mainstream autism research to show that progress is being made, despite the unfortunate anti-vaccine sideshow.

A recent study published in the latest issue of Pediatrics shows that early intervention in toddlers with autism can have significant benefits. The study is a randomized controlled trial of  the Early Start Denver Model compared to conventional treatment in 18-30 month old children with a diagnosis of autism spectrum disorder (ASD). The study is a reasonable size for this kind of intervention – 48 children were randomized – and this is sufficiently powered to get statistical significance. But it should be noted this is still a smallish study and replication to confirm the results is welcome.

Another potential weakness is that the control group was “referral to community providers for intervention commonly available in the community.” Therefore the control group was not standardized and it’s possible this group was sub-optimally treated. Further, while the groups were randomized they were not blinded.

The results of the study are quite robust:

Compared with children who received community-intervention, children who received ESDM showed significant improvements in IQ, adaptive behavior, and autism diagnosis. Two years after entering intervention, the ESDM group on average improved 17.6 standard score points (1 SD: 15 points) compared with 7.0 points in the comparison group relative to baseline scores. The ESDM group maintained its rate of growth in adaptive behavior compared with a normative sample of typically developing children. In contrast, over the 2-year span, the comparison group showed greater delays in adaptive behavior. Children who received ESDM also were more likely to experience a change in diagnosis from autism to pervasive developmental disorder, not otherwise specified, than the comparison group.

The results of this study are plausible and encouraging, and hopefully will lead to further studies to confirm the results.

The concept behind ESDM is this (from the EarlyDevelopment Studies Lab website):

Autism impedes this process of child learning and adult scaffolding, in several ways.  Children with autism are less attentive to other people and so miss many learning opportunities by watching. Young children with autism have impaired communication skills, so they have difficulty learning from the communications that adults provide. Young children with autism also have difficulty imitating others, and so miss opportunities to learn by copying what others do. Young children with autism may not be quite as flexible in their play skills as others, and may enjoy repeating favorite actions with objects, rather than generating new play ideas and learning through discovery, and this limits their learning. And finally, young children with autism may not find social experiences as inherently rewarding as other children, which can result in reduced time in interactions of all sorts. Since interactions are a primary learning opportunity for toddlers, fewer interactions mean fewer learning opportunities.

The ESDM is designed to make learning for young ASD toddlers more fun, dynamic, and child-directed rather than repetitive. The purpose is to compensate for the specific areas of difficulty of ASD children.

While not a “cure” if these results hold up ESDM can be a very effective early intervention for children with ASD. It highlights the potential benefit of early detection and intervention programs.

It also brings to mind the broader context (which is relevant to many neurological diseases and disorders) that at times focus on finding a cure might overshadow research and even clinical attention paid to interventions that improve quality of life and mitigate the impact of a disorder. Finding a cure is, of course, always the long term goal. But we have to be realistic in recognizing that for many complex disorders it is a very long term goal. Meanwhile there is much that can be done to significantly improve outcome, and these types of interventions should not be neglected simply because they are not a “cure.”

Patients and families need to recognize that often there is much that can be done, and they should not neglect medical attention under the false belief that “nothing can be done” simply because a cure does not exist yet. Sometimes, even clinicians need to be reminded of this fact.

Also, research priorities should reflect a reasonable balance between searching for a cure and improving outcomes in the meantime. Grassroots advocacy groups that raise funds for clinical research, in my opinion, often over-emphasize research that has the potential to find a cure in the short term, and may in fact slow overall research progress by upsetting the balance between various kinds of research (basic, therapeutic, and symptomatic).

So it is good to see a solid symptomatic trial like this one get attention, and to remind people that we can make a significant difference with science-based interventions in the lives of children with ASD, even if we don’t fully understand the disorder or know how to cure it.

Posted in: Neuroscience/Mental Health

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37 thoughts on “Early Intervention for Autism

  1. Amy Alkon says:

    When autism is compensated for early, there can be incredible results. A year ago, a friend’s now 5-year-old child couldn’t use silverware or the potty, but with a lot of work targeted to the ways he’s challenged thanks to autism, he’s now able to do both. He’s also a savant, and can possibly contribute a great deal to society. He’s 5 but reads at a much higher level. I bought him a flashlight for his birthday and he read me the entire back of the package, big words and all. Another friend’s child, a smart kid who’s 5, can read the alphabet only.

    A terrific book with a positive outlook on autism spectrum characteristics – Tyler Cowen’s “Create Your Own Economy.”

  2. micheleinmichigan says:

    Thank you. I had not heard about the ESDM approach. I particularly enjoy seeing an article on what SBM has to offer and promising therapies for ASD.

  3. manixter says:

    “Children who received ESDM also were more likely to experience a change in diagnosis from autism to pervasive developmental disorder, not otherwise specified, than the comparison group”

    I don’t think this means that ESDM harmed the children in any way. But I think rather that many cases of autism are misdiagnosed. Certainly the bed-bound, non-communicative children at my institute are– and I think that a number of young children, especially ones with mental impairment, are poorly socialized by parents who may feel overwhelmed caring for them. I’ve also seen a number of anxious but otherwise normally interacting children (and to interact normally in a scary hospital setting is no mean feat) labeled with autism. What gives?
    Thoughts?

  4. DevoutCatalyst says:

    Why so many therapies for autism? 33 flavors, but they’re all still ice cream.

    Lovaas claimed a cure for a subset of autistic children, and in his videos of two children, one formally autistic, the other not, you can’t guess which is which. Is Lovaas a grandiose liar? Or is autism curable — in some cases? What percentage? Is every approach claiming these same results? Enquiring mind wants to know.

  5. superdave says:

    when i read about this story online i made a bet with myself that you would report it before our favorite autism awareness site. This victory rings hollow.

  6. qetzal says:

    Were the investigators who did the scoring blinded to the interventions? I hope so, but the abstract doesn’t say, and the full study is pay-per-view.

  7. Watcher says:

    Children were evaluated by experienced examiners naive to intervention status at baseline (preintervention), 1 year after onset of the intervention, and at either 2 years after onset of the intervention or at 48 months of age, whichever yielded a longer time frame.

    Looks like it.

    I’m interested as to how this intervention would effect learning in normal kids. Too often I don’t necessarily agree with how young children are taught in schools. Although it looks like there’s a big “Hands on” role for parents which many probably wouldn’t be willing to do.

  8. daedalus2u says:

    A good article about a paper I haven’t had a chance to read yet. You describe the difficult balance between research for “cures”, research for treatments, and basic research trying to understand the disorder.

    Most researchers studying autism are very much like the blind investigators and the elephant. They can see the properties of autism in their own specialty, but be blind to the properties of autism in other areas. Until there is a unifying theoretical basis, it is very difficult to fit all the different pieces together.

    What I find encouraging about this particular research is that it emphasizes autism as a disorder of the process of neurodevelopment. Neurodevelopment is a chaotic process, it exhibits what is called the butterfly effect, where differential effects at one time can have macroscopic effects at later times. A slight change in the weighting of how an infant responds to communication could have profound effects integrated over the few years of language acquisition.

    I suspect (but haven’t read the paper) that what the intervention did was increase the attention that a child received in response to that child’s requests for attention, and that this led to positive feedback which increased the child’s requests for attention. If we consider how normal children develop through the same process, the “average” amount of attention the “average” child receives is sufficient to produce neurotypical development.

    Development of communication skills is a dynamic process of interaction with other communicating agents in the child’s environment and neuronal remodeling to generate the neuroanatomy to support communication. Both the child and the environment are important, but because language acquisition is innate and mostly occurs unconsciously, it is easy to ignore the role the environment plays and focus on the child. Of course we need to understand the “normal” process before we can understand how that process is perturbed in autism. Understanding the “normal” process is difficult and tricky because we are participants in that process and dissociating ourselves from our normal role in that process to be able to analyze that role is difficult.

  9. skepchick says:

    @Superdave

    The point of the post is not that one study is a victory but that “early intervention in toddlers with autism can have significant benefits” and that attention to interventions is being diverted by brouhaha over vaccines.

    Early interventions work. My grandson spoke only one word at age 2 years. About 300 words, spoken in two-word phrases is considered typical. He had weekly therapy, mostly speech therapy; now at age 5 years he is ready for kindergarten and his developmental pediatrician is moving him off of the autism spectrum. Now that’s a victory.

  10. JerryM says:

    What are the ethical considerations with this kind of study, where one part is offered a treatment, and the other part is basically left to fend for itself?

    I welcome the study, don’t get me wrong, but isn’t this one of the things always argued against these sorts of studies?

    @DevoutCatalyst: I think it’s because autism is a spectrum, and what works for one doesn’t work for all. This is probably also a reason for all the quak treatments and cures. “If this doesn’t work, maybe this will”

    @manixter: Is PDD-NOS a worse diagnosis than Autism? Asking because you said “I don’t think this means that ESDM harmed the children in any way. ” implying you feel the suggestion of harm was made, which I didn’t read in the article, and that re-diagnosis from Autism to PDD-NOS would be a negative progression.

  11. Todd W. says:

    @superdave

    I was thinking about that too, as I was reading this. Why is it the autism awareness sites that we know and love so well seldom, if ever, report on any kind of early intervention studies? They focus so much on “vaccines are bad, mmmkay?” and promoting all manner of unethical, expensive experimentation on autistic kids that they miss making an impact where it really matters: improving the lives of those with autism, both children and adults.

  12. superdave says:

    @skepchick, I’m sorry, my desire to sound poetic muddled my point. I meant to say that its bittersweet that I was right about Dr. N posting on this before the AOA. That said, I am glad that people are doing this research and I hope that pediatricians get the information so they can share it with their patients.

  13. Adam_Y says:

    @Jerry
    The ethical considerations only apply if the treatment being denied is a part of the standard care. I believe that is the reason why the Gardisil vaccine study was actually stopped because of the fact that there was enough evidence to show effectiveness which means that the people on placebo could also receive the vaccine.

  14. provaxmom says:

    One of the most important life lessons I’ve learned in this is patience. Progress can be slow, and especially when you see a child every day, you don’t notice the progress as much as someone who sees the child less frequently. Typically all we ever hear is “the only thing proven to work is ABA.” And of course that’s hard to find and even harder to pay for.

    .

  15. Calli Arcale says:

    JerryM:
    What are the ethical considerations with this kind of study, where one part is offered a treatment, and the other part is basically left to fend for itself?

    Since most kids with autism don’t receive intervention at this early age, it’s really just comparing them to how they’re usually treated (i.e. not at all). Without better evidence that ESDM works, they couldn’t say they were denying the kids a known good treatment.

    It’s like placebo controlled studies of heart medications. Before the study, you don’t know that the heart medication is actually good for you. Thus, you’re not denying the placebo group a known good intervention. Still, this worry is something that makes it harder to recruit volunteers for a lot of studies.

    @manixter: Is PDD-NOS a worse diagnosis than Autism? Asking because you said “I don’t think this means that ESDM harmed the children in any way. ” implying you feel the suggestion of harm was made, which I didn’t read in the article, and that re-diagnosis from Autism to PDD-NOS would be a negative progression.

    No, PDD-NOS is considered less impaired than autism. It could be reasonably (if somewhat simplistically) expected that a kid with autism who progresses “off the spectrum” would pass through a diagnosis of PDD-NOS on the way. My daughter was diagnosed PDD-NOS; she has autistic traits, but none quite meet the definition for autism.

    So you are correct that autistic children moving to a diagnosis of PDD-NOS is a sign of positive progression.

  16. daedalus2u says:

    Todd, there are multiple reasons why some self-proclaimed autism advocacy groups don’t talk about early intervention.

    A very large number of them are completely entranced by the “vaccines cause autism” idea. Much of that is because they are trying to play the “legal lottery” by suing vaccine manufacturers. The original (and fraudulent) work on vaccines and MMR by Wakefield was (secretly) paid for by lawyers trying to sue the vaccine compensation board. It is much easier to demonize Big Pharma than to solve complex technical problems. The Geiers’ business partner is a lawyer who has received a great deal from the Vaccine Court in fees for pursuing autism-vaccine injury claims.

    The second reason is that many of these parents don’t want a child with autism who is able to function better, they want a child without autism, they want a “cure”. Some of them have even said that they would rather have a dead child than a child with autism. Usually those statements have been made in the context of “see how terrible it is to be the parent of a child with autism, give us money so we can find a cure” but the effect is to negate any positive value to improved function of people with autism. Such parents are called “curebies” and have a profound inability to relate to people with autism, including their own children but also to adults with autism, adults who are higher functioning and presumably are they type of adults these parents should aspire their children to grow into, but they won’t, they would rather their child didn’t grow up than to grow up into an adult with autism, hence the use of puberty suppressing drugs such as Lupron.

    The third reason is that the quacks are in it for the money, and the types of early intervention that are effective (as in this research) are extremely labor intensive. Labor intensive therapies have a low profit margin. There is much more profit in buying chemicals, marking them up a gazillion times and then selling them as quack treatments.

    Some of the autism groups are in it for the money themselves. They may be “non-profits”, but if the “leaders” are paid high salaries, the absence of a “profit” may not matter so much.

  17. lizditz says:

    The Pediatrics paper was published Nov. 30. Since that date, the “online newspaper of the autism epidemic” has published

    *An article on Interagency Autism Coordinating Committee & vaccine safety
    * An article on that organization’s annual awards
    * An article inviting readers to email or call Jon Stewart (the comedian) about his upcoming interview with “Denialist” author Michael Specter
    * An article publicizing an interview on a quack “treatment” for autism, Hyperbaric Oxygen (HBOT)
    * an article on the physical ailments that are presumed to be “co-morbid” with autism, such as GI issues, that are also assumed to be causing autism symptomology
    * an article publicizing a fundraiser for an allied organization
    * an article publicizing an article at the Huffington Post, which attacks Paul Offit MD while comparing him to Catholic church officials who covered up pedophile priests
    * an article with an open letter to Paul Offit MD on the future of current teens and young adults with autism
    * an article attacking Amanda Peet for her pro-vaccine stance.

    They rarely cover “recovery stories”, and if they do, the child is depicting recovering because of the “treatments” they promote.

  18. Watcher says:

    What are the ethical considerations with this kind of study, where one part is offered a treatment, and the other part is basically left to fend for itself?

    I’m not sure if the control was asked to do things “normally” or if they were just given a standardized sham regiment to follow. I think that there’s a flow chart on one of the early pages that has an offshoot from the early ID of 96 candidates that states that half were rejected because they didn’t fall into the proper grouping, didn’t want to keep up the treatment, and/or didn’t agree with potentially not getting the ESDM treatment.

  19. Scott says:

    What are the ethical considerations with this kind of study, where one part is offered a treatment, and the other part is basically left to fend for itself?

    As long as the treatment hasn’t already been established as superior to the standard of care, I don’t see why there would be an issue. Seems like the usual thing; compare “standard of care” to “standard of care plus studied intervention”.

  20. Noadi says:

    JerryM: No, this was totally ethical. The control children were referred the the treatment currently available in the community not offered no treatment at all. That’s the current standard of care. It’s only unethical if you don’t give the control group the current standard of care.

  21. tmac57 says:

    I just sent Dan Olmsted an email calling his attention to the study. I am sure that AOA will welcome this good news eagerly.

  22. DevoutCatalyst says:

    @provaxmom

    “…Typically all we ever hear is “the only thing proven to work is ABA.” And of course that’s hard to find and even harder to pay for.”

    @Noadi
    “…The control children were referred the the treatment currently available in the community not [sic] offered no treatment at all. That’s the current standard of care…”

    Not providing early intervention is cruel and expensive. We might have a taxpayer revolt if the costs for long term care of untreated adults were more widely known.

    With yet another form of early intervention being validated, early intervention must become the standard of care. It’s good for the child, as well as for the bottom line.

  23. JerryM says:

    Thanks everyone for the answers about the ethics involved.

    Another question popped up. How does ESDM compare to earlier (sometimes discredited) concentrated focus on the child programs?

    I was struck by the conclusion as posted in the abstract:

    Conclusions This is the first randomized, controlled trial to demonstrate the efficacy of a comprehensive developmental behavioral intervention for toddlers with ASD for improving cognitive and adaptive behavior and reducing severity of ASD diagnosis.

    The first? what have ppl been doing?

  24. Calli Arcale says:

    All sorts of stuff. It’s pretty scattershot. Part of the trouble is that it’s very time-consuming to do clinical trials of these sorts of interventions, because you have to follow them for years, so it took somebody deciding that they wanted to do it.

    ABA is one of the more common autism-specific interventions. Other interventions used with autistics tend to be more generic. Speech therapy. Occupational therapy.

  25. BA says:

    The EDSM model is not really significantly different from any early intensive intervention program based on addressing the specific deficits a child presents using the principles of learning. One chapter written by a practitioner of the EDSM model lists 6 principles of the intervention: enhancing the child’s relationship with others, a developmental orientation, using the science of learning and teaching strategies consistent with ABA (including PRT), fostering language and communication inside a positive, affect-based relationship, using an interdisciplinary team, and individualizing each child’s program. In their flow chart of procedres, they start (with each skill) with naturalistic teaching using intrinsic reinforcers {my comments- IR = consequences naturally ocurring for such behavior like access to a toy when it is requested or social praise when labeling an object/event/person} when possible; if no measurable progress in 3 days, add reinforcement {on top of IR}, structure, and visual supports; if no measurable progress in 3 days, go to massed trial practice with extrinsic reinforcers {things specific to the preferences of the child like preferred activities or edibles – these techniques are fundamental to an ABA approach}.

    Any sound EI behavioral intervention is going to be targeted towards the deficits any particular child presents with and will use the principles of learning to address those deficits. They would be exceptionally effective when applied to any population. Educational practices are quite divorced from the needs of individuals. As an aside, the terms cure, in addition to carrying the bias of value judgment, is less accurate than the term optimal outcome. This refers to the full integration of the person into the natural setting (e.g., public schools, community, etc.). The person will still have their preferences and habits but will not be in need of supports to function independently. This is the ideal outcome of intervention, not a change of the person per se but the acquistion of necessary life skills. People are people and their differences are what make them individuals.

    A Radical Behaviorist

  26. DevereuxBob says:

    Thank you for an excellent post, and a lesson in internet time. I am the CEO of a non-profit that has been very active in supporting individuals with autism and their families since our work with Dr. Kanner in his original studies identifying the disorder. At the end of the day yesterday I discussed with my executive assistant the alerts we had received about the Journal of Pediatrics article. We discussed a plan for the next day (today) to organize the background information and “quickly” get out information to our stakeholders. When I opened SBM this morning I was stunned to see a solid review of the paper, with links to the key websites and more than twenty-five comments. This is wonderful. I guess we will just provide a link to SBM! Thanks.
    Please be careful about lumping all the advocacy groups together. I am most familiar with the folks at AutismSpeaks. They have very much responded to the clearly expressed service needs of their families and focused an increasing portion of their recent political and fund raising efforts on developing more effective interventions and increasing the availability of those services as much as possible.

  27. provaxmom says:

    @devout catalyst:
    “”With yet another form of early intervention being validated, early intervention must become the standard of care. It’s good for the child, as well as for the bottom line.”"

    I believe it is, as it is a federally funded program. Unfortunately they leave it up to the states how they want to implement. Fortunately in my state, a child only has to have a 25% delay in a given area to qualify for services. In some states it’s as high as 70%. My son has a 50% delay in some areas, so to think that if we moved across the state line, he wouldn’t have qualified for services……just frightening. And frightening for the children who don’t have strong advocate/parents.

    Imagine if you hear “your child doesn’t qualify for services.” Some parents will hear “your child doesn’t need services.” Yet a 2-year-old with the skills of a 1-year-old absolutely needs services.

    I also have heard of pediatricians making glaring errors, as often the EI programs require a ped referral for an eval. One family in my parents’ group had a 2-year-old that still wasn’t even sitting up without assistance……yet the ped saw no cause for alarm or an EI referral.

  28. Todd W. says:

    @provaxmom

    State funding for support services really needs to be standardized and readily available for families in need. Getting proper early intervention shouldn’t break the bank for families. A friend of mine has an autistic boy, and the services available in her area are just not good, from what I’ve heard.

    Hopefully this study and follow-up studies that build on it will help to convince policy makers to expand services and funding for early intervention.

  29. JerryM says:

    provaxman:

    Imagine if you hear “your child doesn’t qualify for services.” Some parents will hear “your child doesn’t need services.”

    I recount the story I believe dr Novella himself told about what patients hear is often quite different from what is said. Paraphrasing: When telling a woman her cancer didn’t need treatment, she burst out in tears, later explaining she thought he’d said treatment wouldn’t help, she was gonna die.

    Think it was on one of the SGU podcasts.

    The differences along state lines are ‘unfortunate’. Even with a less than 25% impairment in some areas, a child can be severely impacted socially. If that could be corrected to say 15%, the child might be able to function much better in school or society.

  30. JerryM says:

    sorry, mom, not man.

    :shame:

  31. Anne says:

    DevereuxBob, Autism Speaks did issue a press release about this study, as the lead author, Geraldine Dawson, is the Chief Science Officer of Autism Speaks.

    If anyone wants to see examples of ESDM in action, there are a couple of clips up at the M.I.N.D. Institute site, here:
    http://tinyurl.com/yjp6pg6

  32. provaxmom says:

    It’s ok to call me man, I’ve been called worse.

    Yes, I was trying to point out the inconsistencies and discrepancies in EI services. I don’t know what the solution is, but with so many variations it makes it difficult to study/track EI and the results.

    Even if criteria and funding was universal, therapists are not. They’re people just like everyone else, and we’ve had great therapists and therapists we’ve had to terminate. It’s just unfortunate that during those times my son has huge gaps in his services.

    What we also really need to address as a nation and as a medical community is this shortage of SLPs and SLP programs and schools. To me as a parent, speech is the skill I worry about most because it’s the key to all his other skills. And with SLP programs putting out SLPs at a rate much lower than what kids are being diagnosed, we’ll never catch up.

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  34. Chris says:

    To “Action Not Words”… you might be taken more seriously if you had actual evidence and data to show that the “science” on this site was not factual. What is really silly is that your site promotes bogus claims on H1N1 cures from one of your advertisers! And your site has the audacity to talk about buying and selling “facts.”

    What a maroon! (hint: look up old Bugs Bunny cartoons)

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