Autism: Start Here | What Families Need to Know

An autism diagnosis can spark so many questions, and so many emotions. You don’t have to navigate this journey alone. Our Autism Start Here publication is a great place to begin. It provides straightforward and understandable explanations, next steps, and links to reliable support to help you begin making a plan for your family. This publication includes an introduction to autism, an explanation of what kind of providers can offer help and what services are offered, and tips on what to look for in a special education program. Autism Start Here will help you understand your options and feel less overwhelmed.

Autism: Start Here What Families Need to Know

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Our Vision We are GROUNDED in science, STRENGTHENED by knowledge and DEVOTED to creating a society of compassion and inclusion for all those touched by autism. Our Mission Autism New Jersey is a nonprofit agency committed to ensuring safe and fulfill- ing lives for individuals with autism, their families, and the professionals who support them. Through awareness, credible information, education, and public policy initiatives, Autism New Jersey leads the way to lifelong individualized serv- ices provided with skill and compassion. We recognize the autism community's many contributions to society and work to enhance their resilience, abilities and quality of life.

GLOSSARY This list is a quick reference for acronyms used within this publication.

AAP

American Academy of Pediatrics

ABA

Applied Behavior Analysis

ADI-R

Autism Diagnostic Interview-Revised

ADOS-2

Autism Diagnostic Observation Scale

ASD

Autism Spectrum Disorder

BCBA

Board Certified Behavior Analyst

CARS-2

Childhood Autism Rating Scale, Second Edition

CDC

Centers for Disease Control and Prevention

CSOC

Children's System of Care

DCF

Department of Children and Families

DDD

Division of Developmental Disabilities

DSM-5

Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition

EEG

Electroencephalograph

EIS (or NJEIS)

Early Intervention System (NJEIS in New Jersey)

ESY

Extended School Year

FAPE

Free Appropriate Public Education

FBA

Functional Behavior Assessment

IDEA

Individuals with Disabilities Education Act

IDEIA

Individuals with Disabilities Education Improvement Act (re-authorization of IDEA in 2004)

IEP

Individualized Education Program

IFSP

Individualized Family Service Plan

LRE

Least Restrictive Environment

M-CHAT-R/F

Modified Checklist for Autism in Toddlers, Revised with Follow Up

NJAC

New Jersey Administrative Code

OSE

Office of Special Education

Occupational Therapist/Therapy

PBS

Positive Behavior Supports

PRISE

Parental Rights in Special Education

Physical Therapist/Therapy

Speech Therapist/Therapy

Table of Contents

What *T Autism and How * s * t Diagnosed? . . . . . . . . . . . . . . .2

Who’sWhoinAutismServices.......................8

Introduction to State & Local Services . . . . . . . . . . . . . . . .10

Early Intervention: Birth to Three

Special Education: Three to Twenty-One

Parent-Professional Collaboration within Early Intervention & Special Education

New Jersey Department of Children and Families

Evaluating Potential Treatments for Autism . . . . . . . . . . . .18

Applied Behavior Analysis (ABA) . . . . . . . . . . . . . . . . . . . .22

What to Look for in a Behavior Analyst

What to Look for in a Special Education Program . . . . . . . .26

Special Education Interview Questions . . . . . . . . . . . . . . .28

SuggestedReading .............................30

Evaluating Treatments Interview Questions . . . . . . . . . . . . .30

Glossary ..........................InsideBackCover

Funding for the initial development of this publication was generously provided by a grant from the Fred C. Rummel Foundation, which supports nonprofit healthcare, human service and education entities throughout New Jersey.

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WHAT IS AUTISM

What is Autism Spectrum Disorder (ASD)? Autism Spectrum Disorder (ASD) or autism is a developmental disorder that affects a person's social communication and interaction. Individuals with ASD also have restricted and repetitive behavior, interests and activities. These characteristics fall across a "spectrum" ranging from mild to severe. While one person may have symptoms that impair his or her ability to perform daily activities, another may have only mildly noticeable differences and have few, if any, functional impairments.

In order for an individual to qualify for a diagnosis of Autism Spectrum Disorder, they must meet the criteria outlined by the Diagnostic and Statistical Manual of Mental Disorders (DSM-5, American Psychological Association, 2013). The DSM-5 requires an individual to meet a specific number of criteria from two major categories. To be diagnosed with ASD, a person must have difficulty with social communication and interaction, and display restricted repetitive behaviors, interests and activities. The diagnostician will rank the characteristics based on level of severity and describe the support the individual needs. For individuals who were diagnosed with ASD prior to 2013, the DSM-5 advises that “individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder.” How do I know if my child is developing typically?

The complete DSM-5 criteria for Autism Spectrum Disorder is available to download at www.autismnj.org/ diagnosis

While there are general trends in how children develop, all children grow and learn differently. Many factors affect a child’s progress toward developmental milestones, and it may be difficult for parents to determine whether their child is on track due to individual differences. If delays are present, early intervention can have a significant and lasting impact. Therefore, it is important to become familiar with child development and discuss any questions with your child’s healthcare providers. How is ASD first identified? Pediatricians are often the first contact when parents become concerned about their child's development. During office visits, the physician may ask questions about the child’s development, and parents often share their concerns at that time. The American Academy of Pediatrics (AAP) recommends that pediatricians screen for ASD during well checks at 18 and 24 months and at any time a parent raises a concern. Pediatricians will ask the parent questions to assess their child's progress toward typical milestones. They may utilize one of the commonly used screening instruments, such as the Modified Checklist for Autism in Toddlers Revised with Follow-Up (M-CHAT-R/F) or

Some developmental milestones include the following:

By 12 months, most children will:

• Imitate simple actions like clapping • Use basic gestures like waving and pointing • Respond when their name is called or when they’re told “no”

By 24 months, most children will:

• Enjoy playing with other children • Identify many different objects • Use 2- to 4-word phrases, such as “want juice” • Play imaginatively with a variety of toys • Follow complex instructions • Speak in 4- to 5-word sentences

By 36 months, most children will:

The Centers for Disease Control and Prevention (CDC) provides detailed information about milestones from birth through age 5 at www.cdc.gov/actearly. In addition, parents can download a free app to track milestones at www.cdc.gov/milestonetracker

WHAT IS AUTISM

• Not respond to their name by 12 months of age • Not point at objects to show interest (point at an airplane flying over) by 14 months • Not play "pretend" games (pretend to "feed" a doll) by 18 months • Avoid eye contact and want to be alone • Have trouble understanding other people's feelings or talking about their own feelings • Have delayed speech and language skills • Repeat words or phrases over and over (echolalia) • Give unrelated answers to questions • Get upset by minor changes • Have obsessive interests • Flap their hands, rock their body, or spin in circles • Have unusual reactions to the way things sound, smell, taste, look, or feel Source: www.cdc.gov/ncbddd/autism/signs.html for additional examples the Childhood Autism Rating Scale Second Edition (CARS TM 2). Careful consideration of parents' responses on the screening instrument allows the pediatrician to determine if there is cause for concern and referral. If the screening indicates a number of red flags, the pediatrician may recommend that the child participate in a multidisciplinary evaluation. Although the initial screening does not result in a diagnosis, it provides valuable information for the parents so they can begin treatment while waiting for an appointment with a full evaluation team. The creators of the M-CHAT-R/F offer the screening tool as a free download at www.mchatscreen.com and provide translations into numerous languages. What red flags may indicate the presence of autism? The Centers for Disease Control and Prevention (CDC) lists a number of possible red flags that parents or caregivers may notice including: What do these concerns actually look like? The major characteristics common to autism are deficits in social communication and interaction, and restrictive, repetitive behaviors, interests and activities. These traits fall along a continuum from mild to severe and vary from person to person. Difficulty with social interactions Some individuals with autism do not spontaneously reach out to others to share information or feelings. While some may not seem to notice other people at all, others may strongly desire to interact with others but are not sure how to appropriately initiate interactions with others, or may become overwhelmed in social situations due to deficits in social skills. With effective treatment, many people with autism learn social skills and come to enjoy spending time with others. Difficulty with communication Many individuals with autism have delays in or do not develop spoken language. Some may only communicate using single-word utterances or simple sentences. Other speech abnormalities include echolalia (immediate or delayed repeating of information), unconventional word use, and unusual tone, pitch and inflection. Others have complex vocabulary and can speak at length and in depth about topics that interest them, but they may have poor conversational skills. They may also have difficulty understanding common nonverbal cues such as body language, facial expressions and eye contact. Individuals with autism who do not develop functional speech can use augmentative means of communication, such as sign language, picture boards and technological devices. Autism-specific apps can help them to communicate their needs and feelings, as well as to gain independence in their daily activities.

WHAT IS AUTISM

Unusual behaviors Individuals with autism have restrictive, repetitive behavior, interests and activities. For example, a child with autism may play with only one toy or watch the same video repeatedly. People with autism may engage in peculiar, sustained play activities such as spinning the wheels of a toy car instead of pretending to drive it, or dangling an object in front of their eyes for long periods of time. Other repetitive behaviors may include motor movements, such as hand flapping, spinning or jumping. Some people with autism may focus intensely on a particular topic, such as dinosaurs or vacuum cleaners, to the exclusion of any other interests. Individuals with autism can be very reliant on specific routines and resistant to changes. Even a minor change in their routine or environment could be a great upset to a child or adult with autism. What can parents expect at a diagnostic evaluation?

During evaluations, the child and parents may meet with a number of specialists, including a pediatric neurologist or developmental pediatrician, psychologist, speech-language pathologist, and occupational or physical therapist.

If autism is suspected, an evaluation by a physician or psychologist should be conducted as soon as possible. Sometimes, a variety of professionals also conduct evaluations. During these evaluations, the child and parents may meet with a number of specialists, including a pediatric neurologist or developmental pediatrician, psy- chologist, speech-language pathologist, and occupational or physical therapist. Ideally, each professional sum- marizes his/her findings in a written report. Ultimately, the child must meet the criteria outlined by the DSM-5 to qualify for an official diagnosis by a physician or psychologist. The evaluation may consist of the following components: 1. Medical and developmental history : Parents/caregivers will be interviewed to collect information about the pregnancy, birth, health, and medical history of the child. They will also report any behavioral concerns and the progress the child has made toward developmental milestones. Social and development questionnaires may be requested to assess the child’s behavior both at home and at school, daycare, or other childcare settings. 2. Autism testing: Observations should include both structured and unstructured observations of the child. Information about the child’s development is assessed through the Autism Diagnostic Observation Schedule ADOS ® -2, a series of tasks that assess an individual’s social and communication skills, play, behavior, and restricted interests. To capture as much information as possible about the child’s life, the team interviews the people who know him best: the parents. Thus, parents may be asked to complete a structured interview such as the Autism Diagnostic Interview ADI ® -R and a Vineland Adaptive Behavior Scale (Vineland TM -II) to provide an assessment of the child’s communication, socialization, daily living skills, and motor skills. These assessments, in addition to other standardized measures that may be used, will pro- vide a basis for determining if the child has ASD. 3. Psychological testing: A psychologist will administer developmental and intelligence testing. These tests yield important information related to the child's abilities, limitations, and overall level of functioning compared to other children the same age. 4. Speech-language assessment: A speech therapist will assess the child's communicative abilities, including the ability to understand and use language, articulate clearly, use language for different functions, and engage in conversations. The speech therapist’s evaluation should result in specific treatment recommendations for improving the child’s speech and communication. 5. Occupational or physical therapy assessment: An occupational therapist will assess the child's fine motor and self-help skills to determine if the child is able to complete age-appropriate activities such as getting dressed,

WHAT IS AUTISM

using utensils, brushing teeth, or writing. The physical therapist will evaluate the child’s gross motor skills and coordination (e.g., running, biking, throwing, catching). These evaluations should result in recommendations to improve the child’s ability to complete daily living skills. Once each component of the evaluation is completed, the team reviews the findings with each other and then with the family. The team provides a written report to the family which specifies the diagnosis, if any, and the amount and type of services recommended. Parents can then begin to schedule appointments with individual treatment providers. Are any medical tests used to diagnose autism? Although there is no diagnostic laboratory test for ASD, tests are often recommended for the following reasons: 1) to search for a cause, 2) to find out if there are other medical problems that might look like autism (e.g., hearing loss), and 3) to detect additional medical problems that might be co-existing with autism. Audiologic testing is recommended for any child with delayed language or at risk for autism. A child who does not speak or respond to others’ speech may have autism, a hearing problem, or some other condition which interferes with speech. Neuroimaging, the process of capturing images of the brain, may be needed if there is an abnormal neurologic examination not explained by the diagnosis of autism (e.g., non-symmetrical motor examination, cranial nerve abnormalities, microcephaly). Hypopigmented or hyperpigmented skin lesions, in which the skin appears lighter or darker, may be examined by a Woods Lamp. Electroencephalograph (EEG), a test that measures the electrical activity of the brain, may be recommended if the child is demonstrating signs of seizure activity or language regression. Routine clinical neuroimaging, such as Magnetic Resonance Imaging (MRI), is not recommended as part of the diagnostic evaluation of autism at the present time. Metabolic testing (a blood test) should be considered when there is a history of lethargy, cyclic vomiting, early seizures, intellectual disability, or unusual facial features. Untreated phenylketonuria (PKU) is an example of a metabolic disorder.

Additional blood tests may be recommended. Lead testing is recommended for children with pica (eating substances other than food). Individuals may also have their ferritin level checked if there are concerns of anemia (a lower than normal amount of red blood cells).

“Autism New Jersey gave us hope, allowed us to cry, encouraged our dreams and provided us with the information we’d need to forge ahead.” Gino, father of a son with autism

Genetic testing may be used to rule out Fragile X Syndrome or other genetic disorders. Girls who fail to progress and lose skills following typical development may be tested for a mutation in the MECP2 gene, indicating the presence of Rett’s Disorder. Physicians may also consider other genetic tests such as CGH (microarray). Further medical tests may be recommended by the team. Individual recommendations are based on the child's medical history and symptoms. What causes autism? Currently, there is no known cause of ASD. Research suggests that autism is caused by genetic factors, which may be triggered by environmental causes. Exposure to environmental causes may occur in the womb or during or after birth. Ongoing studies are primarily focused on genetic and environmental causes, such as maternal illnesses during pregnancy, conditions during childbirth, and chemical exposures in the individual’s environment. ASD is not linked to parenting skills or psychological issues. Given the many similarities and differences between individuals with ASD, many researchers suggest that there is likely to be more than one cause of autism. Autism Speaks provides regular updates on the latest findings in autism research at www.autismspeaks.org .

WHAT IS AUTISM

How common is autism? According to the Centers for Disease Control and Prevention (CDC, 20 ), autism affects 1 in individuals nationally and 1 in 3 in New Jersey. The number of children identified with autism has been growing steadily in the last few decades. Some of this increase can be explained by: • more comprehensive research methods (e.g., casting a wider net in health and educational settings and seeking out those who do not have a diagnosis) • accounting for the full spectrum from mild to severe • improved parent and professional awareness • advanced parental age Researchers from the fields of genetics and environmental toxicology continue to investigate other possible reasons why the rate of autism has increased so significantly. Visit www.autismnj.org/prevalence-rates for the most recent prevalence information. What can a diagnostic evaluation not tell me? Diagnostic evaluations provide a wealth of information about an individual’s abilities and limitations. However, even after numerous assessments and medical tests, the cause and prognosis will likely still be unclear. There is considerable variation in the abilities of people with ASD. Some individuals may need extensive, lifelong support to function in home, vocational, and community settings, while others may need intermittent support in fewer areas. While effective and early intervention can greatly improve an individual’s prognosis, as of now, there is no definitive way to know what a person’s level of functioning will be in the future. Thus, the diagnostic evaluation should provide families with the information they need to seek appropriate treatments to address current deficits and teach new skills. Such skills are likely to have a substantial impact on the person’s ability to interact with others and his/her quality of life. With a lot of hard work, individuals with ASD can make tremendous progress.

Resources Management of children with autism spectrum disorders by American Academy of Pediatrics, available at www.pediatrics.org

Learn the signs. Act early. by Centers for Disease Control and Prevention, available at www.cdc.gov/actearly

Community report from the Autism and Developmental Disabilities Monitoring (ADDM) network. www.cdc.gov

Special thanks to Dr. Audrey Mars who provided input for this section. Dr. Mars is a neurodevelopmental pediatrician at Hunterdon Health Care and a long-time member of Autism New Jersey’s Professional Advisory Board.

Who’sWho in Autism Services

To find referrals for a service provider in your area, visit www.autismnj.org/referral or contact Autism New Jersey at 800.4.AUTISM

Board Certified Behavior Analysts are professionals who use behavioral assessments to design, implement, and evaluate procedures to help individuals learn new skills and reduce challenging behaviors. BCBAs are certified at different levels based on educational and experience requirements. BCBAs work in a variety of settings, such as homes, schools, in the community, and private practice. For more information: www.bacb.com Board Certified Behavior Analyst (BCBA) Case Managers serve as the primary contact and coordinator of services for a child receiving special education. Case manager is a general term that is used across different service systems, such as early intervention, public school and state agencies. For example, school Case Managers help to coordinate communication between school and home, and they are responsible for scheduling Individualized Education Program (IEP) meetings. For more information: www.state.nj.us/education/specialed/ Case Manager Developmental Pediatricians are medical doctors who receive specialty training in developmental behavioral pediatrics after completing a residency in pediatrics. Developmental pediatricians participate in multidisciplinary teams to evaluate an individual for a suspected diagnosis. They provide medical and behavioral oversight as a child ages and transitions between educational settings. For more information: www.abp.org Developmental Pediatrician

WHO’S WHO

Neurologists are physicians who specialize in the diagnosis and treatment of neurological disorders, such as epilepsy and autism. Neurologists participate in multidisciplinary teams to evaluate an individual for a suspected diagnosis. They conduct brain imaging tests and provide medical recommendations for various neurological conditions. For more information: www.aan.com Neurologist Occupational Therapists help individuals improve their fine motor skills such as writing and cutting, and they also teach daily living skills to increase independence and active participation in life. OTs work in a variety of settings, including homes, schools, in the community, and private practice. For more information: www.nbcot.org Occupational Therapist (OT) Pediatricians are physicians who specialize in treating children. Pediatricians oversee an individual’s physical, behavioral, and developmental health from birth through adolescence. Pediatricians may screen for autism spectrum disorder during well checks and refer a patient for a multidisciplinary diagnostic evaluation if necessary. For more information: www.aap.org Pediatrician Physical Therapists help individuals to improve muscle strength, balance, coordination and gross motor skills. PTs work in a variety of settings, including schools, homes, outpatient rehabilitation clinics, and private practice. For more information: www.apta.org Physical Therapist (PT) Psychiatrists are physicians who specialize in treating mental health disorders. They have training in diagnosis, medical care, and psychotherapy. Psychiatrists may be involved in the prescription and oversight of certain medications. Psychiatrists work in hospital settings and private practice. For more information: www.abpn.com Psychiatrist Psychologists are clinicians who treat a variety of common problems. Clinical psychologists are doctoral-level professionals who treat a variety of mental health symptoms such as depression, anxiety, anger, and stress. They may provide parent training and support, as well as assist in addressing the needs of a family. School psychologists are typically masters-level professionals who specialize in psychology as it relates to education, and they help children both academically and behaviorally. School psychologists often conduct educational assessments. Psychologists work in school settings, hospitals, and private practice. For more information: www.apa.org Psychologist Speech Language Pathologists evaluate, diagnose, and treat speech, language, communication, and swallowing disorders. Speech therapists help individuals improve their articulation, understanding and use of language, conversation, and social skills. They may also assist in the selection and development of augmentative and alternative communication devices. SLPs work in a variety of settings, including schools, homes, hospitals, and private practice. For more information: www.asha.org Speech Language Pathologist (SLP) Directors of Special Education supervise a school district’s special education services. They manage the child study team, supervise the development of IEPs, and help to ensure service provision is consistent with the NJ Administrative Code. For more information: www.state.nj.us/education/specialed/ Director/Supervisor of Special Education

Introduction to State& Local Services Early Intervention | Special Education | Parent-Professional Collaboration within Early Intervention & Special Education | New Jersey Department of Children and Families |

STATE & LOCAL SERVICES

The New Jersey Early Intervention System (NJEIS) under the Department of Health implements New Jersey’s statewide system of services for infants and toddlers, birth to age 3, with developmental delays or disabilities and their families. State Early Intervention programs are governed by Part C of the Individuals with Disabilities Education Act (IDEA). Eligibility Early Intervention services are provided for eligible children until the age of 3. In New Jersey, children are evaluated using a standardized assessment tool and are eligible for NJEIS when: (a) two or more areas of development are delayed below the average of other children; OR (b) when one area of development shows a significant delay. In technical terms, children are considered eligible when they are experiencing a developmental delay that meets these criteria: (a) 1.5 standard deviation below the mean in each of two functional developmental areas (scored below approximately 90% of children their age); OR (b) 2.0 standard deviation below the mean in one functional developmental area (scored below approximately 98% of children their age); OR (c) Diagnosed physical or mental condition that has a high probability of resulting in developmental delay.

BIRTH TO THREE

Children are evaluated in the following developmental areas: • Physical development • Social and emotional development • Cognitive development • Adaptive functioning • Communication development

Children with a documented diagnosis of autism spectrum disorder are determined eligible for the NJEIS.

Accessing Early Intervention Services A parent who is interested in accessing NJEIS services should contact the toll free number 888.653.4463 . A service coordinator will talk with families about their concerns. If the family consents, the service coordinator will work with the family to schedule an evaluation of their child’s developmental levels and needs. Children who have a diagnosis prior to their referral to NJEIS will also have an assessment conducted by a NJEIS team to determine developmental levels and needs. Evaluation and assessment services are provided at public expense with no cost to families.

STATE & LOCAL SERVICES

Services Following the evaluation process, an Individualized Family Service Plan (IFSP) is written at a meeting with the family, the service coordinator, at least one member of the evaluation team and anyone else the family wishes to include. The IFSP is a written document that identifies services and supports needed for the child and family. It is based on information collected from the family, as well as from the evaluation and assessment. In order for the child to receive services, the parent must consent to the plan. Parents have the right to withdraw consent at any time. Out of the services offered, parents can reject some services and accept others. The plan is reviewed every six months, or more frequently as appropriate to make sure it continues to meet the needs of the child and family. At least once a year, parents participate in a meeting to review their child's outcomes and IFSP services for any changes needed. The meeting must be held at a time and location that is agreeable to the family and in the language or method of communication that is used in their home.

• Nursing services • Nutrition services • Occupational therapy Early intervention may include the following services: • Assistive technology • Audiology services • Family training, counseling, and home visits

• Transportation • Vision services • Special instruction (New Jersey uses the term Developmental Intervention ) • Psychological services • Service coordination services

• Physical therapy • Speech therapy • Social work

• Health services • Medical services

Transition to Preschool An important part of early intervention services is assisting children and families to make the move from the early intervention program to school services as smooth as possible. This process is called transition. When a child is approximately 2.5 years old, a transition information meeting will be held with the parents, service coordinator, and others who have worked with the child and family to begin planning for services and supports that might be needed when the child turns 3. As in other meetings about a child’s needs and progress, it is essential that parents are part of the planning. As a child approaches 3 years of age, the service coordinator will help with transition from early intervention to a preschool program which may be provided by their local school district, and/or other service providers, based on the child’s needs. Financial Contribution

The Department of Health has set up a Family Cost Participation system to determine each family’s ability to contribute toward NJEIS services. Based on family size and household income, NJEIS determines the per hour co-pay for a family. This amount cannot exceed the actual cost of service and will not be more than 5% of the family’s monthly income. Families with an annual income at or above 300% of the federal poverty level will be required to participate in the costs of NJEIS services provided. Families must agree to provide required income documentation to determine family cost participation for services. For more information see www.nj.gov/health/fhs/eis/ .

It is common to feel overwhelmed when

learning about early intervention, educational services, and your child’s rights. There may be a lot of unfamiliar vocabulary, services, and procedures. If you need more information to understand your

rights in special education, please call 800.4.AUTISM to speak with one of our knowledgeable and

compassionate staff members.

STATE & LOCAL SERVICES

SPECIAL EDUCATION: THREE to TWENTY-ONE Special Education | Eligibility | Accessing Special Education Services | Services Special Education Special education rights in New Jersey are derived from the federal law commonly known as IDEA (Individuals with Disabilities Education Act). The New Jersey Administrative Code (NJAC) 6A:14 are the state's regulations based upon IDEA. NJAC 6A:14 explains the rights of the children determined eligible for special education and related services as well as policies and procedures the school districts must adhere to in order to comply with the law. Additionally, it illustrates procedural safeguards in case a school district and parent do not agree on a particular issue. The New Jersey Administrative Code (NJAC) 6A:14 is available from Autism New Jersey, directly from your school district, or from the New Jersey Department of Education’s Office of Special Education (OSE) at 609.292.0147 or www.nj.gov/education/specialed/ . Eligibility A student is eligible for special education and related services when it is determined that the student has a defined disability that affects his/her educational performance and requires special education and related services. The disability categories are: “auditorily impaired, autistic, cognitively impaired, communication impaired, emotionally disturbed, multiply disabled, deaf/blindness, orthopedically impaired, other health impaired, preschool child with a disability, social maladjustment, specific learning disability, traumatic brain injury, or visually impaired.” Accessing Special Education Services When appropriate, parents are encouraged to contact the local school district’s Special Services department and request an evaluation to determine eligibility for Special Education services. Parents may call to request the evaluation: however, putting the request in writing and sending it by certified mail ensures that the school district has received the information and will respond. A meeting may be held to determine if an evaluation is warranted as well as which evaluations would need to be conducted.

THREE TO TWENTY-ONE

STATE & LOCAL SERVICES

Services The New Jersey Administrative Code states that parents are a part of the Individualized Education Program (IEP) team. This means that parents are members of the IEP team and have the right to provide input into the development and implementation of the IEP as well as placement considerations. The New Jersey Administrative Code also addresses issues such as class size, Extended School Year (ESY), discipline, the 17 required components of the IEP, and the 11 items to be considered when developing the IEP. Based on federal law, children who are eligible for special education services have the right to a Free Appropriate Public Education in the Least Restrictive Environment (LRE). The essence of FAPE is an “appropriate” education. Yet, the term “appropriate” is different for every child and based upon a number of factors. The IEP team makes decisions about educational placement following consideration of the nature and severity of the child’s disability, different types of educational settings, and the child’s present levels of performance. The IEP is a document that lists all of the educational services that are to be provided to the child receiving special education. It should describe the child's special education program in detail. It should also describe how the child currently performs and his or her specific instructional needs across all academic and functional areas. Additionally, the IEP must include measurable annual goals and short-term objectives or benchmarks. It is important that the parents collaborate with school staff to ensure that any services the parents deem necessary are included to allow their child to benefit from their education as appropriate. The IEP is a legal and binding contract between the school district and the parents. School districts are responsible for the education of a child with autism from the age of 3 to 21 if appropriate. They are also responsible for any related services the child may need to benefit from their special education. Once parents provide consent to begin the initial evaluation process, a 90-day time-line begins. Within that 90-day period, the school district conducts the educational evaluation of the child, develops the IEP with parent input and begins implementation of the IEP. Reevaluations will be conducted at least every 3 years (unless waived) and the IEP will be reviewed and updated annually.

If a parent does not agree with the school district's evaluation, they have the right to request that an independent evaluation be performed at public expense. An independent education evaluation is an assessment of a child that is conducted by a qualified person or persons not employed by the child’s school district. School districts may make referrals for providers, or individuals can call 800.4.AUTISM to find an appropriate evaluator. The school district will also provide the parents with a copy of a booklet called Parental Rights in Special Education (PRISE). PRISE is a condensed version of the New Jersey Administrative Code and comes complete with sample forms for requesting emergency relief hearings, complaint investigations, mediation, and due process hearings. This booklet must be provided by the school district one time per year, such as when a child is referred for an initial evaluation, when a reevaluation is conducted, and when a request for a due process hearing is submitted to the Department of Education. At other instances, the school district must provide parents with a statement explaining that parents have rights under the special education law, how parents can obtain a copy of PRISE, and sources they may contact for assistance in understanding special education rules.

Available Services Related services include, but may not be limited to, the following: • Counseling • Medical services • Occupational therapy • Physical therapy • Recreation • School nurse services • Social work services • Speech-language services • Transportation

STATE & LOCAL SERVICES

PARENT-PROFESSIONAL COLLABORATION within EARLY INTERVENTION & SPECIAL EDUCATION Children with autism spectrum disorder benefit considerably when parents and professionals work cooperatively to plan for and meet their needs. It is common for multiple service providers to be involved in the child’s care and treatment. Parents, family members, and service providers each bring their own perspectives, expertise, and experience with the individual. Therefore, members of the child’s treatment team should regularly share information with each other as they all work toward the goal of achieving the best outcome for the child. Parents should always be considered equal members of this team. Collaboration means working together in an equally reciprocal relationship to achieve a common goal. Effective collaboration begins with consistent and open communication. Parents and professionals can form a successful partnership by focusing on the child’s goals and working on them together. A collaborative relationship can be cultivated in a number of ways. For parents, participating in activities such as volunteering at school or joining a parent advisory council or parent teacher organization may be fulfilling, educational, and provide networking opportunities. Parents may also wish to share their ideas for new goals and objectives for their child with professionals. For professionals, sensitivity is crucial when working with a family to establish educational goals for a student with ASD. Although it is important to share their expertise, profes- sionals should be considerate of the difficult issues facing the family. Like any other relationship, the parent-professional one takes work. Despite the best of intentions, there may be times when parents and professionals do not see eye-to-eye about recommendations or services for a child. As challenging as that may be, it is often in the child’s best interest to continue to negotiate and advocate informally. Clear, open, honest, and written communication with the members of the IFSP or IEP team can often resolve issues before more formal procedures are needed. Even if the team seems to be working effectively together, communication and trust may break down. If this occurs, there are procedural safeguards in place that allow parents to request a facilitated IEP meeting, file a formal complaint, or begin mediation or due process.

COLLABORATION

STATE & LOCAL SERVICES

Helpful Hints for Receiving Appropriate Early Intervention Services The service coordinator should fully understand the child’s and family’s needs. Similarly, parents should become familiar with NJEIS terminology and what the system does and does not offer. For example, in NJEIS, one of the services is called “Developmental Intervention,” and it takes many forms based on the child’s needs. Methods based on the principles and practices of applied behavior analysis (ABA) fall under the category of Developmental Intervention. Thus, if a parent would like to request ABA services, they can do so within the discussion of what type of Developmental Intervention they see as the best fit for their child and family. See page 22 for an in-depth discussion of ABA. If a family cannot come to an agreement with the service coordinator about the child’s services, or feels that the child’s service coordinator is not providing the services in the IFSP, there are specific steps to take. These procedures are described in the New Jersey Early Intervention System Family Rights Handbook, which can be accessed at: www.nj.gov/health/fhs/eis/for-families/safeguards-familyrights . Helpful Hints for Receiving Appropriate Special Education Services Similarly, the IEP team should fully understand the child’s needs. If a family cannot come to an agreement with the other members of the IEP team about the child’s services, or feels that the team is not providing the services in the IEP, assistance is available. These procedures are outlined in detail in the Parental Rights in Special Education (PRISE) booklet that is available from your local school district or the New Jersey Department of Education at: www.state.nj.us/education/specialed/form/prise/prise.pdf .

STATE & LOCAL SERVICES

NewJersey Department of Children and Families Children’s System of Care

The New Jersey Department of Children and Families' Division of Children's System of Care (CSOC) administers the publicly-funded developmental disability service system for children and youth up to age 21.

PerformCare is the administrative services organization and the single point of entry for all requests for eligibility and services through CSOC. PerformCare arranges needs assessments and facilitates the delivery of family support services. PerformCare's services include funding for respite and camp, in-home behavioral support, assistive technology devices, and home and vehicle modifications. In addition, placement in residential treatment or group homes may be provided when a child's needs cannot be met in the community. Application materials, a list of frequently asked questions, fact sheets about Family Support Services and other information can be downloaded at www.performcarenj.org/families/disability/index.aspx. For new applications, or to request services for an eligible individual, contact PerformCare at 877.652.7624. PerformCare is available 24 hours a day, 7 days a week. Applications on behalf of individuals who are 18 years or older must be submitted to the Department of Human Services (DHS) Division of Developmental Disabilities (DDD). CSOC will honor determinations of eligibility and provide developmentally disability services made by DDD for individuals between the ages of 18 and 21. If your child has an unmet need, contact PerformCare to apply for eligibility or to request a specific support service. Families should keep in mind that services provided through CSOC are based on eligibility and availability of funding.

Supports for Adults 21 and Over The New Jersey Division of Developmental Disabilities (DDD) provides supports and services for individuals with developmen- tal disabilities age 21 and over. For detailed information about DDD, visit www.autismnj.org or the Division's website: www.state.nj.us/humanservices/ddd/home/index.html

Autism New Jersey can assist parents in navigating service systems for their loved one via phone, email or workshops.

Evaluating Potential Treatments for Autism 18

EVALUATING TREATMENTS

When a child receives a diagnosis of autism, parents are immediately faced with many important decisions. Choosing a treatment for your child can be a confusing and overwhelming process. While you can easily find information about a variety of treatment approaches, sometimes the extensive amount of information available makes it more difficult to navigate the decision process. As you learn about different interventions, you may come across many promising options. Various treatment providers may claim that their methods provide the greatest potential for improving your child’s outcome. You may also learn about the concept of “evidence-based treatment.” So how do you sift through all of this information and go about making the right decision for your child and family? Choosing a treatment approach for your child with autism is similar to choosing a treatment for any medical condition—ideally you will use an approach that has been thoroughly researched and proven to work. Treatment outcomes should provide evidence that the intervention helped participants learn new skills or reduce levels of challenging behavior, and that minimal or no side effects were observed as a result of the treatment. These outcomes should reflect meaningful and positive changes in the individual’s life. To date, there has been substantial research demonstrating the effectiveness of certain treatments. Unfortunately, however, many treatments marketed to the autism community do not demonstrate any scientific evidence of effectiveness, yet they often receive more attention in the media and the community. While it is certainly important to be optimistic and open to promising treatments, parents should also be cautious of treatments that have not been tested. It is therefore essential for parents to review all of the options carefully in order to make informed treatment decisions for their child. These decisions will have a direct impact on the quality of treatment the child receives and may ultimately save the family valuable time that could be lost when pursuing ineffective treatments. Given the complexity of reviewing the research to make these decisions, the National Autism Center recently assembled a large group of researchers to evaluate the existing studies on autism treatment. The findings were widely disseminated through the National Standards Project Phase I (2009) and Phase II (2015). In Phase I, Researchers carefully examined 775 studies of various treatment options, resulting in the classification of treat- ments into the following categories: established (significant research supports the effectiveness of these treat- ments), emerging (some research supports the effectiveness, although further research is warranted), and unestablished (no sound evidence of effectiveness exists). Phase II provides an update to the literature for interventions for those under age 22, and also included studies evaluating interventions for adults (22+). This categorization provides a structure from which parents can make informed treatment decisions. Autism New Jersey utilizes a similar classification system, which is outlined in the agency’s Position Statement on Treatment Recommendations. This classification system uses a traffic light as an analogy for understanding treatment recommendations: green light interventions are recommended, yellow light interventions should only be used cautiously, and red light interventions should be avoided due to proven ineffectiveness. The National Standards Project concluded that interventions derived from applied behavior analysis (ABA) demonstrated the most consistent and positive results for individuals with ASD. ABA is an umbrella term for a number of techniques and treatment packages. ABA treatment is individualized and adapted for the learner, and the intensity of treatment is matched to the person’s need. There is an emphasis on using a person’s motivations to make therapy fun and engaging, while teaching the individual new skills. ABA has also been proven effective in reducing challenging behaviors. For more detailed information about ABA, see page 22.

Full reports from the National Standards Project are available to download at www.nationalautismcenter.org

Furthermore, the Association for Science in Autism Treatment (ASAT) provides descriptions of autism interventions and the current state of research supporting or failing to support these interventions on their website: www.asatonline.org .

EVALUATING TREATMENTS

Treatment recommendations

Yellow light (have not been studied enough) More research needed Animal therapies Art therapy Developmental therapies (DIR/Floortime, RDI, ESDM) Medical marijuana Green light (shown through research to be effective) Applied behavior analysis (ABA) *includes a variety of evidence-based practices; see website Medications to treat ASD-related irritability: Risperdal and Abilify Music therapy Oral Motor therapy (PROMPT/Kaufman) Project TEACCH Vitamins (most)

Ultimately, it is suggested that families choose the intervention that has the highest likelihood of success for their child and is a good match for the family.

Preliminary evidence suggests ineffectiveness Craniosacral therapy Dietary changes

Sensory integration Vitamin B6 with magnesium

Red light (shown through research to be ineffective or harmful) Auditory integration training Chelation and clay baths Facilitated communication Hyperbaric oxygen therapy For more information and an expanded list, please visit the Treatment section of our website. Psychoanalysis Rapid Prompting Method Secretin

It is recommended that evidence-based treatments (e.g., ABA), which are those known to be effective, be considered first. Parents should also take other important variables into consideration, such as: the family’s time and monetary resources, the availability of providers, and the clinical recommendations of professionals who know the child. Additionally, families may wish to consider beginning only one treatment at a time. When multiple treatments are provided concurrently, it is very difficult to detect which treatment contributed to any resulting behavior change. Finally, when using any treatment, it is highly recommended that objective data

be collected and analyzed to determine if the treatment works for that individual. Objective data describe observable and measurable behaviors rather than rely- ing on subjective reports or people’s impressions. Exam- ples include the number of words a child uses per day, the length of time it takes for a child to follow an instruc- tion, or the duration of sitting in circle time. A greater amount of objectivity will help you decide if a treatment approach is effective and should be continued.

“Autism New Jersey provided me with a clear sense of what to do in a way that the many confusing and conflicting voices on the internet could not.”

Mary Beth, mother of a son with autism

Individuals with ASD deserve state-of-the-art interventions to help reduce the core symptoms of the disorder. While decisions about treatment approaches are certainly difficult, Autism New Jersey can provide you with resources to help you navigate the process. As you begin to investigate treatments and interview providers, it is suggested that you consider and ask providers the questions on page 32.

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