Support Letter to the Amendment of MEDICAID in NJ for Early and Periodic Screening, Diagnostic, and Treatment of Autism Spectrum Disorders

Division of Medical Assistance and Health Services

Office of Legal & Regulatory Affairs

Attention: Margaret Rose

PO Box 712, Mail Code #26

Trenton, New Jersey 08625-0712

Dear Ms. Rose:

 

I would like to first and foremost thank you for inviting our comments and scientific input to this important matter. I will speak both as the leading PI Director of the New Jersey Autism Center of Excellence, and as a worldwide recognized scholar with over 20 years of experience in the field of Computational Neuroscience. The past 10 years of my career, I have made autism spectrum disorders the main thrust of research in my laboratory. I have done so with the main purpose of building collaborative networks that allow for the fruitful integration of the valuable work that both clinicians and scientists doing translational research in autism, carry on. In all these years, I have learned to navigate through both worlds and have successfully built many bridges to reconcile disparate information and enormous gaps in skill sets and ethical values. I will speak to you of what we have learned in the last decade and of what we, as a center have set ahead to accomplish.

 

The diversification of treatments and the introduction of outcome measures that assess treatment’s effectiveness in a personalized manner are at the top of our agenda for the next 5 years of our tenure as the New Jersey Autism Center of Excellence. As the statewide center of excellence, we support 100% the proposed amendments to the state plan for Medicaid/EPSDT treatment for children with autism.

 

Because such treatments have a lifelong impact on the person’s existence, this letter speaks to three epochs where the individual will likely receive some form of treatment or intervention. These evolve along maturational stages of the nervous systems [1-4] and can be broadly construed as (1) infancy and early childhood prior to school age, before a diagnosis of autism spectrum disorders is given; (2) after the diagnosis of ASD is given including before and after the child enters school age; and (3) after the individual reaches the age of 21 and transitions into adulthood. Although (3) goes beyond the scope of the amendment, I will include it here to reflect the potential consequences of not diversifying treatments and their coverage in NJ; and of not scientifically measuring the physical nervous systems output, beyond observation.

 

Autism Spectrum Disorders is an umbrella term that encompasses many different types of neurodevelopmental disorders, including ADHD (a spectrum of disorders too) as per the DSM-5 revision, several rare neurodevelopmental genetically-based disorders (e.g. Fragile X, SHANK3 deletion syndrome, Retts syndrome, tuberous sclerosis complex, among many others). It is a medical condition with many somatic-sensory-motor systemic consequences that go on to result in the failure to scaffold autonomous control of the brain over the body, particularly when no proper neurodevelopmental support is provided.

 

Years ago, many of the developmental disabilities that are now receiving an ASD diagnosis were not part of autism. Yet, because today, these neurodevelopmental disorders also go on to receive a diagnosis of ASD, the diversification of the spectrum of children with multiple disorders necessarily calls for the diversification of treatments. This profoundly heterogeneous condition cannot be treated under a “one size fits all” model and much less do so without infusing neuroscience content in every accreditation program that certifies people to treat the nascent and very fragile nervous systems of the affected children. There is mounting scientific evidence in the field of Developmental Neuroscience that autism is in large part a disorder of the nervous systems [2,5]. Risk for autism can be detected at 18 months [6] through simple questionnaires and even earlier using analytical tools and commercially available biosensors that by 3 months of age forecast the neurodevelopmental problems [7].

 

There is solid scientific evidence that there is a lack of maturation in the nervous systems of the person that goes on to receive this diagnosis, that can be unambiguously detected at three years of age and that manifests as quantifiable excess random noise across all biorhythms of the autonomic, peripheral and central nervous systems [8]. These individuals suffer severely from pain, have temperature dysregulation and overall cannot properly feel their bodies [9,10], thus resulting in self-injurious acts that seek sensations, but that are erroneously perceived as “bad behaviors”. These behaviors are often subject to punishments and behavioral reshaping regimes under animal (Skinner operant) conditioning methods that date back to the 1950’s. Such methods were adapted to be used in human children in the 1970’s by Lovaas [11] and established as a method of behavioral modification asserting that "Science is predicated on the assumption of determinism." page 25 of "Applied Behavior Analysis" Second Edition by Cooper, Heron and Heward (emphasis added) [12].

 

A problem here is that unlike 20th Century subjective Psychology, 21st Century objective Computational Neuroscientific research indicates that fluctuations in behaviors are stochastic in nature, owing to the non-linear complex dynamics of the developing nervous systems. And as such, the relations between sensory consequences of actions and their potential antecedents are also stochastic. In particular, aspects of behavior that transpire largely beneath awareness and as such, escape the naked eye, add a layer of variability and ambiguity to voluntary acts, that turns out to play a fundamental role in the self-discovery of cause and effect by the child that is allowed to explore action and reaction pairs through trial and error [13]. Much as a neonate would, the child in the spectrum of autism needs this natural self-motivated exploration, free of prompting or external rewards in the initial stages of neurodevelopment. It is the self-discovery of being in control and of connecting intentions and actions that actually produces internal reward to the child and leads to the development of volition and spontaneous (free of prompting) autonomy [3,14]. Only through this neuroscientific-driven path will the person be capable of developing self-initiated and self-controlled actions at will, resulting in the capacity for independent living.

 

These statements do not just stem from anecdotal stories by parents of individuals with ASD and self-advocates with ASD, which constitute a strong evidence-based account of autism. These statements come from solid scientific evidence obtained using the scientific method, through very rigorous instruments and analytics published in peer-reviewed journals. Such journals require highly interdisciplinary teams of scientists and clinicians to review and validate the work. These sources of evidence stand in stark contrast to those from insular approaches to autism that discourage the use of diverse treatments on accounts of evidence-based techniques, which no other scientific community has ever been able to check or independently reproduce. Beware of such isolated, impenetrable groups or organizations that behind a non-profit label amass large profits at the expense of the affected highly heterogeneous autism community. Without neutral observers and scientists who have no conflict of interest, the claim of recommending one treatment over another is utterly invalid, because no objective quantitative outcome measure of treatment effectiveness has ever been used up to date in the clinical community at large.

 

As a behavioral analyst in the field of Computational Neuroscience, whose career has been devoted to create such mathematically sound objective biometrics [3,14], and to design them informed by clinical criteria from collaborative work, I would like to underscore that no treatment or intervention in autism has physically measured the consequences or the effectiveness of the intervention on the child’s nervous systems. As such, THERE IS NO SCIENTIFIC EVIDENCE on the effectiveness of one treatment over another. We simply do not know.

 

Interventions in autism –whether behavioral or drug-driven, are based on trial and error, carried on without any proper scientific method that leads to reproducible outcomes. This statement is not an opinion [15]. Review of over 17K papers on autism spanning from 1994-2015 revealed the prevalence of subjective observation over physiological/neurobiological research in autism. There is simply no proper scientific evidence just yet, to systematically approach the complexity of two people interacting within a therapeutic setting and objectively quantifying the impact that the uncertainty, stress/anxiety created by a given intervention-context may have on the child’s nervous systems. In particular, my lab has developed such methods [3], and we have received support from the Governor’s Council to do so (grant CAUT14APL018), but we have yet to publish the full extent of the two-year longitudinal work that we carried on: a work that is unique in the world of autism (preliminary results published here [3] and here [16])

 

The need for developmental-based interventions that nurture the emotional components of social interactions (e.g. DIR Floortime) and those which treat somatic-sensory-motor issues (e.g. sensory-motor based OT, Hipotherapy, Aquatherapy, Sports models, Neuromusic therapy, among others which stimulate sensory-motor processing in the context of social exchange, and predictive actions) is evidenced in recent changes at the National Institutes of Health towards the update of the Research Domain Criteria (RDoC) matrix. Such changes include the addition of the sensory-motor axis to promote research related to these component of mental conditions that the National Institute of Mental Health supports.

 

https://www.nimh.nih.gov/news/science-news/2019/sensorimotor-domain-added-to-the-rdoc-framework.shtml

 

Further, the addition of sensory criteria in the DSM-5 for ASD diagnosis, underscores the importance of recognizing and treating sensory problems from an early age.

 

“Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).”

 

In particular, self-sensed biophysical motions across the nervous systems provide a quantifiable signal that enables us to know the levels and quality of sensory feedback that the brain is accessing for each person at any given time. Indeed, such kinesthetic reafference sensory information provides the means to develop sensory augmentation and sensory substitution models to bypass corrupted sensory feedback and to help regulate and enhance the sensory world of the child with ASD. In so doing, we can help the child’s brain build self-awareness and acquire cognitive control of its intentional thoughts. We can help the child’s nervous system bridge the gap between the mental intent to act and the physical volitional act that the body constructs during voluntary behaviors. Such research protocols can be trivially extended to the clinical interventions, provided that the accredited personnel delivering the intervention receives training on the neuroanatomy and neurophysiology of the developing nervous systems and the principles of neuroscience that we know today. Should we not have these basic sources of knowledge in place at our classrooms and continuing education seminars, we will not make progress in advancing the effectiveness of our treatments.

 

This is extremely important because the state of NJ may be poised to face a crisis ahead. An entire generation of young adults who were subject to intense therapies of one kind all these years, excluding other interventions that could have helped scaffold the autonomy of their nervous systems, did not develop independence. Consequentially, these young individuals today cannot independently perform simple activities of daily living. They require a personal aid at all times, prompting them to initiate simple tasks in sequences, through visual icons, in order to function. This generation that has now reached young adulthood level, will require Medicaid too, and will require services inclusive of an aid, likely to remain under those circumstances for the rest of their existence.

Table 1 above is from the publicly available data from the Department of Education. It shows the actual numbers of students with disabilities that receive aid and services since 2002.

 The Figure below depicts the exponential rate of steady increase in autism in our state (blue curve in the left panel). These graphs are plotted directly from the data in Table 1.

 Importantly, the Intellectual Disabilities curve on the left panel is also on the rise, albeit with a linear trend; while autism is on an exponential (non-linear) trajectory, growing with accelerated rate. These rates upward are accompanied by plateauing changes in the slopes of the curves of the right hand side panel corresponding to Specific Learning Disabilities and Other Health Impairments. Judging by the slowing down of these curves, it is likely that the autism diagnosis is now absorbing other disabilities previously diagnosed under those other categories. This would not be surprising, given the subjective nature of the instruments used to diagnose autism in the first place; and the lack of normative data and proper statistical metrics of instruments like the ADOS-G and ADOS-2 [17]. The frequent shifts in DSM criteria do not help either, so it will be necessary to begin including more objective criteria, i.e. based on physical biometrics of these medical conditions of the nervous system, well beyond observation, if we want to advance research.

 

This information, dating back to 2002 includes a steady number of (on average) 222,943 individuals with disability receiving school services (averaged cumulative line in Table 1 at the bottom). These individuals range from 3-21 years of age. Those who were 4 years old and above in 2002 are adults today. At the exponential rate of growth in the number of children now receiving the ASD diagnosis, the reader can see the sense of urgency and the gravity of the imminent crisis that we have ahead in NJ. Under an insular “one size fits all” approach to this profoundly heterogeneous condition, we will face even larger issues with the steady increase in the number of adults that we will inevitably face in NJ. At a conservative estimate of ~136K adults today, and at an average of 50K in aid per person (mid value between 19K and 79K that the NJCAT will confer through the DDD program), we will need a minimum of 6.8 billion dollars, not counting the coverage of home health aides. Are we going to have enough in State Aid?

 

The diversification of treatments and the personalization of treatment plans will increase the likelihood of scaffolding the development of autonomy in the nascent nervous system of the child. According to the Neuroscience literature, the early development of autonomy can lead to the development of the capacity for independent living in adult life.

 

Because of the autism heterogeneity, and the exponential rates of change in ASD diagnosis in our state, it is imperative to stratify autism and to handle each cluster of disorders according to their most urgent medical needs. These may include astray reflexes in early infancy [18], somato-sensory-motor issues detectable since neonatal ages [7], accelerated or stunted physical growth (e.g. early accelerated rate of growth in head circumference in some infants [19,20], or stunted weight gain accompanied by stunted development of neuromotor control in others [7]), gastro-intestinal issues and issues with the autonomic nervous systems and the peripheral nervous systems in general [21].

 

In this sense, an essential area for management of the complexities of ASD, is care-coordination. It will be important for Medicaid to cover the time that various clinicians spend in care coordination. Currently, this is time consuming and clinicians do not have time to adequately build it into their appointments, as they do not receive extra reimbursement when providing this service. Further, it will be critical to add Advanced Practice Nurses (Nurse Practitioners), dentists (to manage orofacial pain in autism), child neurologists, child psychiatrists, practice psychologists and licensed clinical social workers to the list of professionals that provide developmental consultation, screening and diagnostic evaluations. Such consultations fall within their scope of practice and coordinating medical care through such integrative approach will lend continuity of care along the lifelong time course of the autistic condition.

 

Such coordinated care will be essential to scaffold the emergence of autonomy in the child’s nervous system. But current accreditation curricula producing certification to authorize billing, ought to be informed by the scientific evidence generated in the past two decades of NEUROSCIENCE research, from molecules to behavior. They should also include training on bio statistical methods and outcome measures of treatment effectiveness. Treatments and outcome measures ought to be designed and continuously informed by a diverse crowd of professionals with clinical knowledge in different areas. As such, coverage will be necessary for coordinators with interdisciplinary training able to effectively integrate all these areas.

 

To support diversification of treatment options, at the NJACE, we are promoting the integrative concept of Intelligent Diversified Assessments and Treatments of Autism (iDATA). This initiative brings together complementary approaches such as ABA and Developmental Relationship-based interventions inclusive of those that scaffold somatic-sensory-motor systems and evoke actions that afford measurements, while allowing natural variability from exploration of the environment through trial and error. Such approaches preserve the positive aspects that the principles of ABA offer, by creating structure, and guiding the child; while adding the missing piece in ABA of emergent variability from self-exploration and self-discovery that neonates and young infants need, in order to establish relations of cause and effect. Other models in sensory-motor-integration-based OT and Hipotherapy, Aquatherapy and DIR-Floortime help the child work with the therapist to scaffold emotion and self-confidence within a social context that allows spontaneous prompt-free exploratory variations. Taken together, all these complementary approaches and personalized treatment plans will give rise to a product that is much more than the sum of its parts. This new diversified treatment approach, and the iDATA that we will obtain from it, will help us create better programs for the clinic and the home. We will help parents continue the treatments at home in the absence of the therapist, while promoting Smart and Mobile Health concepts.

The NJACE is committed to this diversification and is already collaborating with BCBAs, OTs, relationship-modelers, DIR Floortime modelers, speech therapists and more generally the cognitive and developmental neuroscience community, and the local entrepreneurs that can provide the badly needed technological advances to help promote outcome measures of treatment effectiveness for Personalized Medicine. We are developing new training modules informed by self-advocates, parents and therapists from all areas of the autism spectrum. The future is on our side.

 

We fully support this amendment and the clinical community that is committed to integrate their knowledge and share their skills set to work towards the transformation of the autistic child into an independent and happy adult ready to be embraced as an integral part of our society.

 

Thank you, New Jersey Office of Legal & Regulatory Affairs, for all you have done for autism.

 

Sincerely,

Elizabeth B Torres, PhD

Lead PI and Director of the NJACE

Head of the Sensory Motor Integration Lab

Rutgers University

  

References Cited

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2             Torres, E. B. et al. Autism: the micro-movement perspective. Front Integr Neurosci. 7 32, doi:10.3389/fnint.2013.00032, (2013).

3             Torres, E. B. Objective Biometric Methods for the Diagnosis and Treatment of Nervous System Disorders. (Academic Press, Elsevier, 2018).

4             Torres, E. B. & Denisova, K. Motor noise is rich signal in autism research and pharmacological treatments. Sci Rep. 6 37422, doi:10.1038/srep37422, (2016).

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