Identifying Autism in Early Childhood

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This presentation will educate viewers on early red flags of ASD, the importance of early detection, screening tools, and what to expect from an initial evaluation.

Presented by: Elizabeth McHugh, PhD, Neuropsychology Postdoctoral Fellow at CNNH

“Wisdom from Wall” is a Webinar series presented by our clinicians at the CNNH – Wall Township office in an effort to showcase the wonderful staff we have working at that location.

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Autism Decoded: The Genetic Revolution

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A Webinar presented by: Mark Mintz, MD, Pediatric Neurologist and President, CEO, and Founder of CNNH

8th Annual Autism Lecture Series – November 15th, 2016
Autism Initiative at Camden County College

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Keeping It Together When Faced With an Autism Diagnosis

As seen on Autism Spectrum News Summer 2016 Edition (page 25) >

Your child has been diagnosed with Autism… now what?
Many parents feel as though they are finally able to answer some of the questions they have had regarding their child, but still feel confused, overwhelmed, and frightened about what to do next. Parents are their child’s best advocate and have the right to be fully informed of what the appropriate next steps are.

Next steps can be confusing and overwhelming when presented with a variety of approaches that have been found useful in treating individuals with an autism diagnosis. Parents may be faced with various recommendations, such as ABA therapy, speech therapy, feeding specialists, neurologists, etc. However, being unfamiliar with these areas of treatment, where they are located, and who should provide each service, can be daunting to a family with a newly diagnosed child. It is common for families to be given a list (aka “the list”) of resources that they can independently reach out to. However, scheduling the appropriate evaluations can be time consuming, intimidating, and, sometimes, defeating. In addition to seeking out and understanding treatment, medical insurance is a key factor in this equation. This is a significant consideration when attempting to get treatment services for your child or family member.

Upon receiving “the list,” how does one go about identifying appropriate service providers who are ethical, effective, and within a reasonable proximity to their home? Often times, parents share they will “Google” treatment providers, seek out feedback from other parents, or use various online “medical” resources that can be found on the internet. We advise our families and families reading this article to reach out to resources, which can provide information that is both ethically sound and legally correct. In the state of New Jersey, for example, we often utilize the following parent advocacy groups SPAN (Statewide Parent Advocacy Network – http://www.spanadvocacy.org), FACES 4 Autism (http://faces4autism.org), a support network for families with autism, Autism New Jersey, and Autism Speaks. Each of these resources have clinicians, volunteers, and team members who are well versed in the diagnosis of Autism and who can assist in the process of attaining ethical and effective treatment.

Sometimes, having a diagnosis and knowing where to seek out ethical and effective treatment can bring relief. Along with relief, diagnosis coupled with where to attain treatment can bring awareness to matters that were questionable. A diagnosis can lead parents to an appropriate treatment plan. This treatment plan may begin as young birth through the 3 months and continue on through the school age years.
The act known as IDEA (Individuals with Disabilities Education Act) was initially developed in 1975 to ensure free and appropriate education for children with disabilities and is federal law. The act was revised in 2006 to include Part B covering school-aged children through adults up to age 22 years. IDEA was revised a second time in 2011 to include Part C covering infants and toddlers through three years of age.

In short, IDEA, Part B provides parents with their rights as the parent of a child with special needs to be informed of and included in the evaluation of their child, academic placement of their child, and meetings regarding their child’s progress and development. Part B indicates parental consent is required in order for services to be offered, maintained, or stopped. IDEA, Part C states families of children with developmental disabilities are entitled to an evaluation to determine eligibility for an individualized family support plan (IFSP) as well as early intervention services that include a variety of developmental goals for their child including but not limited to communication, fine/gross motor, and self help. Additional information on IDEA may found at http://idea.ed.gov

Outside of IDEA families may require private services in the form of ABA therapy, speech therapy, physical therapy, or occupational therapy where insurance may or may not be utilized or the treatment may fall under the category of a “non-covered service”. Related services for individuals with an autism diagnosis are often conducted on a weekly basis. In turn from week to week families may be facing high co-pays, high deductibles, or costly self-pay fee schedules. Parents are often paying hundreds, even thousands of dollars, for services with providers whom they trust or to wait for appointments through their in-network provider, which may have providers that are not as experienced or have the rapport with the child. It is not uncommon for families to share with us they have experienced sleepless nights worrying about receiving appropriate and effective treatment and covering the cost of these therapies.

Families should contact their health insurance companies and speak with a representative knowledgeable about their particular plan, as well as the services the insurance offers for the specific diagnosis. Families are also encouraged to reach out to the billing department in the organization where their child is receiving treatment, as these individuals may have contacts within the designated insurance company who can efficiently assist with the process. Families can also independently contact board certified clinicians at the BACB (Behavior Analysis Certification Board) via the board ] website www.BACB.com. The site lists credentialed clinicians, their contact information, and their location. Families can search by clinician name, zip code, state, or country and inquire as to what costs for ABA therapy are, as well as, if they are covered by insurance.

Once a provider is located, families are encouraged to ask the clinician/team about his/her experience, as not all individuals credentialed in ABA or other related services have the same experience or specialties. Parents are encouraged to convey concerns to the therapist and be an active member of the child’s treatment team.

The writers of this article are Board Certified Behavior Analysts and would like to dedicate this section to helping parents know what to look for in order to create a successful ABA therapy environment. Parents please be sure the following are including in your child’s ABA therapy program:
• A positive rapport between your child, you, and their therapist.
• Time for “work” and time for “play.” Discrete trials should not make up the entire child’s programming. Children with autism require so much more, such as development of appropriate leisure skills, appropriately playing and interacting with family members, and successfully completing community outings.
• Observation of your child’s sessions with the therapist. This is an opportunity to see how your child interacts with the therapist and an opportunity for you to observe the therapist in order to generalize these skills across settings.
• Organized program goals, data collection to document goals, plans, behavior information, etc.
• Regular meetings (monthly, bi-monthly) with the therapist to review analyzed data and gain an understanding of what that data means for treatment and program implementation.

When a family is given a diagnosis of autism or other developmental delay, the individual(s) with the diagnosis often requires an abundance of care and attention.
This can leave little time to spend with other family members such as other children or significant others. Parents often wonder where they will find the time and patience for others. The ability to be flexible is a valuable skill. This means one parent must be prepared to leave an event while the other stays with the rest of the family, setting aside specific days and times to spend with other children in the family, setting aside time for yourself, designating time for you and your significant other, and being proactive to prevent maladaptive behavior from occurring.

Parents also shared having family and friends close by can be a great resource. One parent expressed, “If you’re lucky enough to have family close by, ask for help.” Having a family member come over might allow you to get your household in order, run errands, or even socialize with your spouse or friends. If other family members do not reside locally, ask a friend or neighbor. Accepting the help and not making additional work for yourself is also important. For instance, do not clean up your house just because you asked a neighbor to watch the children while you run to the food store; run to the food store because the house will still be standing when you return home.

Parents also expressed significant concern for their children with special needs for when their children become adults there is no longer a guardian to care for them. Some of the parents we spoke with in preparing for this article are parents of non-verbal children or parents of children with limited cognitive abilities. Parents expressed fears of their child being taken advantage of, getting hurt, or simply not having their day-to-day needs met properly in way that maintains their integrity. Preparation for the future was emphasized. Parents shared while it is “unsettling” and “scary” to think about, preparations such as guardianship and wills should be prepared even when the child is young. This is one way to assist in ensuring your child’s needs can be met to the best of your ability when you as the parent are no longer here to meet them.

This article has discussed quite a bit about therapies and services for individuals with Autism or other developmental disabilities. However, we also want to emphasize the importance of allowing time for yourself and your family outside of therapies. It is easy to get caught up in and focus solely on your child receiving as many therapeutic services as possible. Receiving appropriate and good quality services regularly is important. That said, it is important to maintain balance and understand quality of life for all family members is equally as important.

References
Celiberti, D., Buchanan, S., Bleecker, F., Kreiss, D., & Rosenfeld, D.(2004). The Road less traveled: Charting a Clear Course for Autism Treatment. Autism Basic Information. COSAC, New Jersey.

Fry William, B. & Lee Williams, R. (2011). Effective Programs for Treating Autism Spectrum Disorder: Applied Behavior Analysis Models. Routledge, NY.

Maurice, C., Green, G., & Fox, R.M. (2001). Making a Difference. Behavioral Intervention for Autism. Pro-Ed, Austin, Texas.

Specialty Care Medical Home and the Changing Landscape of Healthcare Delivery

Mark Mintz, MD, President, Founder and CEO of CNNH, discusses the changing landscape of healthcare delivery models, what is a medical home, and what is special about CNNH’s “Specialty Care Medical Home”® model of care.

This conversation occurred during Practical Neurology’s coverage of the American Epilepsy Society’s 2015 69th Annual Meeting: https://www.aesnet.org/meetings_events/annual_meeting/general_info

This video is courtesy of Practical Neurology and Bryn Mawr Communications, see more coverage of AES 2015 here: http://practicalneurology.com/series/daily-coverage-aes-philadelphia-2015/video.asp?f=agegorew

The Epilepsy – Autism Connection

Under certain conditions, anyone can experience a seizure. However, individuals with neurodevelopmental disabilities and brain disorders are more prone to developing recurrent seizures, or epilepsy. Why?

What is Epilepsy?
Epilepsy is diagnosed when there are recurrent, unprovoked seizure events. Seizures occur when there is a sudden change in the electrical activity of the brain that disrupts normal brain functions. Seizures can take many forms. The more widely recognized types produce observable events, such as “convulsive” shaking, loss of body control, involuntary movements, and/or loss of awareness or consciousness. However, seizures can also be very subtle, for example disrupting a person’s thought patterns or memory but without noticeable external symptoms. There can also be unexpected “subclinical” electrical changes of the brain (particularly “spikes”), detected by electroencephalography (EEG, a device that records the electrical activity of the brain) monitoring, that are neither noticeable to the individual experiencing this phenomenon nor to observers. Unrecognized and untreated, epilepsy carries a risk of injury from seizures, including trauma, drowning, aspiration, and rarely, sudden unexpected death (SUDEP), as well as unfavorably affecting behavior, development, memory or learning. In those individuals with Autism Spectrum Disorder (ASD), having an associated diagnosis of epilepsy can increase the risk of mortality seven-fold.1

Is There an Autism-Epilepsy Connection?
It has been observed for many years that individuals diagnosed with ASD are at high risk of developing epilepsy. Various studies have placed the risk between 6% to 26% of children and adolescents, with a cumulative risk into the adult years reaching as high as 67%.2 Overall, the risk of epilepsy is higher in ASD if there are associated intellectual disabilities or Cerebral Palsy.3 Why is there this connection? Generally, any brain disorder will increase the predisposition and lower the threshold for generating seizures. Additionally, ASD and epilepsies appear to share common biological and anatomical mechanisms. Advances in biotechnologies have revealed that there are many types of genetic variations causing or contributing to both ASD and the generation of seizures. Innovations in neuroimaging tools and neuropathological studies have revealed “disconnectivity” of various brain circuits leading to both autism and epilepsies. Various prenatal, neonatal and childhood metabolic, infectious and inflammatory disorders have been implicated in both ASD and epilepsy. Thus, understanding the epilepsy-autism connection is providing clues to the causes of ASD.

How is Epilepsy Diagnosed in ASD?
The behavioral and developmental complications of ASD can obscure or mimic the clinical manifestations of seizures; thus, the recognition of seizures is not always apparent in this population. Oftentimes children and adults with ASD do not have classical seizure manifestations. An EEG is necessary to determine if there are clinical or subclinical seizures, or abnormal electrical discharges that might be interfering with brain function or present a high risk for recurrent seizures. Language regression can signify a severe form of an “epileptic encephalopathy” (“Landau-Kleffner” and other related syndromes). Such individuals have very abnormal EEGs, with abnormal electrical patterns worsening with sleep but usually without observable clinical events. Infantile seizures associated with fever can sometimes evolve to autism, and, like other epilepsy syndromes, can be associated with genetic defects of “ion transport” (ions include sodium, calcium, potassium, magnesium). Some individuals with ASD and epilepsy will have “drop attacks” (a sudden loss of motor/body control causing a person to drop their head or fall to the ground) and their EEG will have a specific electrical pattern (“Lennox-Gastaut Syndrome”). Other individuals might only have a staring spell, have unwitnessed seizure events during sleep, or may have classic convulsions.

Overall, since epilepsy is a diagnosable condition with important “actionable” clinical implications, clinical evaluations of individuals with ASD should include screening and assessment of seizure risk and susceptibility. In addition to a comprehensive medical and neurological history and examination, there are other neurodiagnostic tests that a specialist may consider or recommend, including:

EEG: This device measures the activity of brain cells (“neurons”) in real-time. Conventional EEG can be difficult to obtain in ASD since the application of the approximately 20 electrodes with glues/pastes/scalp abrasion can be traumatic in those with behavioral challenges. Newer “dense-array” EEG technologies allow for application of many more electrodes (128 sponge electrodes) using a specially designed “sensor net” that is applied in minutes without discomfort or risk of infection.

Neuroimaging: Magnetic Resonance Imaging (MRI) is the study of choice to assess for significant structural abnormalities or malformations of the brain. Other neuroimaging technologies (positron emission tomography [PET], single-photon emission computerized tomography [SPECT], MR Spectroscopy [MRS], diffusion tensor imaging [DTI]) can be useful in select cases.

Laboratory Evaluations: There are wide arrays of relevant laboratory tests of the blood, urine, and on occasion cerebrospinal fluid (CSF) or skin/muscle tissue, which can help identify a biological cause of epilepsy and/or ASD.

Genetics: There has been an explosion of the availability of advanced genetic testing technologies, which are transforming the understanding, diagnosis and treatment of epilepsy and ASD. In many cases, the sequencing of thousands of “genes of interest” can be performed on a saliva sample. Genetic testing can also provide information concerning risk, susceptibility and prevention of complications of epilepsy and ASD, sometimes with implications for other family members.

Neuropsychological Evaluation: Both epilepsy and ASD can have profound effects on neuropsychological function. Neuropsychological evaluations include a series of empirically validated, norm-referenced, and evidence-based tests that quantitatively and qualitatively measure brain function, processing and output.

How is Epilepsy Treated?
Treatment must be individualized and personalized, and include programs to encourage healthy lifestyles (good sleep patterns, nutrition, physical activity, and stress reduction). Therapeutic strategies should target identifiable biological mechanisms and triggers of epilepsy, and simultaneously attempt to relieve seizure burden. Therapies should attend to medical and neurological/neuropsychological complications of epilepsy and/or medications, involve preventative strategies for risk reduction and SUDEP, and provide for a “rescue” plan in cases of acute seizure events. The mainstay for limiting seizure recurrence and promoting spike suppression are antiepileptic drugs (AEDs). In cases of identifiable metabolic and genetic disorders, nutritional supplements or dietary alterations may be indicated. Other options include specific diets such as the ketogenic and related diets (high protein and fat, and minimal carbohydrates), neurostimulation (devices that deliver periodic electrical currents, such as the vagal nerve stimulator [VNS] and other modalities) and “seizure surgery” (the localization and removal of brain tissue identified as the source of seizure generation). Research into the common biological sources of epilepsy and autism may lead to new and novel therapies that propose to alter the course of the disease.

In most cases, epilepsy is a treatable condition. Through proper screening and diagnosis, and the utilization of pragmatic therapies and interventions, the quality of life for children, adolescents and adults who may be suffering from epilepsy and ASD can be improved.

References

Pickett J, Xiu E, Tuchman R, et al. Mortality in Individuals with Autism, with and without Epilepsy. J Child Neurol 2011; 26:932-939.

Amiet C, Gourfinkel-An I, Bouzamondo A, et al. Epilepsy in autism is associated with intellectual disability and gender: evidence from a meta-analysis. Biol Psychiatry 2008; 64:577-582.

McVicar KA, Ballaban-Gil K, Rapin I, et al. Epileptiform EEG abnormalities in children with language regression. Neurology 2005; 65:129-131.

Suren P, Bakken IJ, Aase H, et al. Autism spectrum disorder, ADHD, epilepsy, and cerebral palsy in Norwegian children. Pediatrics 2012; 130:e152-158.

Bolton PF, Carcani-Rathwell I, Hutton J, et al. Epilepsy in autism: features and correlates. Br J Psychiatry 2011; 198:289-294.

Viscidi EW, Triche EW, Pescosolido MF, et al. Clinical characteristics of children with autism spectrum disorder and co-occurring epilepsy. PLoS One 2013; 8(7):e67797.

Woolfenden S, Sarkozy V, Ridley G, et al. A systematic review of two outcomes in autism spectrum disorder – epilepsy and mortality. Dev Med Child Neurol 2012; 54:306-312.

By Mark Mintz

CNNH Presents Research Findings at Autism Research Summit

 

Article Excerpt from “State’s First Summit on Autism Aims to Broaden Definition” by Briana Vannozzi – NJTV News:

A broader definition of autism, it’s a change researchers agree was needed.

“These individuals with autism have many different different reasons why they have this common final pathway to developmental issues and behavioral problems,” said Dr. Mark Mintz, President and CEO for the Center for Neurological and Neurodevelopmental Health.

And these doctors and families want to know why. This statewide summit on the autism spectrum disorder — held at Montclair State University — brought together some of the state’s leading minds to present the latest research.

“The problem with autism is you can make a diagnosis for autism without regard to what causes it from a biological perspective. So our research is really trying to understand the biological causes and contributions to autism spectrum disorders,” Mintz said.

Genetic sequences and DNA patterns were a big topic today. Researchers say they’ve found that the features of autism share many genetic similarities with other neurological disorders.

“If we approach the behaviors more as a neurological disorder, than the treatments might be total different,” Mintz said.

Anxiety and Autism

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Learn about the complex relationships between anxiety and autism in this webinar presentation.

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For Autism, No Such Thing as a Quick Diagnosis

In a presentation at the 12th Annual International Meeting for Autism Research (IMFAR), The Center for Autism Research (CAR) concluded that a 10-minute office visit is not sufficient to accurately diagnose autism, even when administered by a group of autism experts. The implications of this study are very important for clinicians and families and show the need for CNNH’s “Specialty Care Medical Home”™ model of care in diagnosing autism.

Diagnosing ASD is a complicated process that requires expertise supported by objective testing results. For those health care providers that are often the first to encounter a child with ASD, relying on observations during a brief office visit is insufficient to determine a diagnosis. Thus, pediatricians, family physicians, and other providers should listen carefully to parental concerns and should refer readily when any “red flags” of autism are raised. For those involved in performing autism evaluations, it is also insufficient to rely solely upon testing results (such as the ADOS) or subjective clinical impressions, but to make a diagnosis based upon a comprehensive evaluation that combines historical information, developmental and examination findings, behavioral assessments and objective testing results.

In their study, CAR researchers took 10-minute video clips of children (ages 15 to 33 months) divided into three groups: early signs of an autism spectrum disorder (ASD); suspected language delay; and typically developing children. Video clips were taken at different points during administration of the Autism Diagnostic Observation Schedule (ADOS) assessing social interaction, communication and play skills. When the experts were asked to rate the video clips based on the question “Would you refer this child for an autism evaluation?”, the researchers found, surprisingly, that the experts were often wrong in their diagnostic conclusions. For 39% of the children with ASD, the experts stated there was not evidence of an ASD diagnosis. There were also high rates of incorrect diagnoses for predicting language delays, and even diagnosing typical children as having ASD 11% of the time.
By Sarah Woldoff