Intervention guidance for families - Birth23.org GUIDELINE 1 Autism Spectrum Disorder Intervention guidance for families Families’ Overview and Summary of Best Practices Table of

1S E RV I C E G U I D E L I N E 1

Autism Spectrum DisorderIntervention guidance for families

July, 2011

Families’ Overview and Summary of Best Practices

ServGuideAutismFamilyCover_ENG.indd 1 8/26/11 10:09 AM

AcknowledgementsThe Birth to Three System would like to thank the following individuals for their con-tributions. Without their efforts, this guideline would not have been possible.

2011 REVISION

Phillip Strain, Ph.D. University of Colorado Denver, School of Education and Human Development

Edward Bovey, M.A. University of Colorado Denver, LEAP Coordinator

Linda Goodman Director, Birth to Three System, Dept. of Developmental Services

Aileen McKenna, Ph.D. Family Liaison, Birth to Three System, Dept. of Developmental Services

Deborah Pagano Parent

In addition, thanks to the many professionals and parents who reviewed the draft document and gave us constructive feedback.

Requests for copies of this guideline or any other guideline may be made by:

CONTACTING

Connecticut Birth to Three System 460 Capitol Avenue Hartford, CT 06106 (866) 888-4188

Department of Developmental ServicesTerrence W. Macy, Ph.D., CommissionerKathryn duPree, Deputy Commissioner

or DOWNLOADING FROM OUR WEBSITE:www.birth23.org

Connecticut’s lead agency for the Birth to Three System is:

SERVICE GUIDELINE 1

Autism Spectrum DisorderIntervention guidance for families

Families’ Overview and Summary of Best Practices

Table of Contents

Introduction . . . . . . . . . . . . . . . . . . . . . . . 2

What are Autism Spectrum Disorders? . . . . . . . . . . . . 2

What Causes Autism Spectrum Disorders? . . . . . . . . . . 2

What Happens Now? . . . . . . . . . . . . . . . . . . . 3

Guiding Principles . . . . . . . . . . . . . . . . . . . . 3

Materials to Guide the IFSP Planning Process . . . . . . . . . 9

Alternative or Complementary Treatments . . . . . . . . . . 11

Supports for Families . . . . . . . . . . . . . . . . . . . 14

Questions Commonly Asked by Parents . . . . . . . . . . . 16

Medical Follow-up for Children Identified with ASD . . . . . . . 20

Other Family Resources . . . . . . . . . . . . . . . . . . 21

Glossary of Terms . . . . . . . . . . . . . . . . . . . . 23

“About Our Child” Questionnaire . . . . . . . . . . . . . . Centerfold

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IntroductionThis handbook was developed as a companion guide to “Service Guideline #1: Autism Spectrum Disorder” to give you some basic information on the evidence-based approaches that you and your family can expect from any Connecticut Birth to Three program. We realize this may be an especially challenging time for you as you navigate through the many emotions that having a newly diagnosed child with an autism spectrum disorder (ASD) may bring. We hope this handbook will help calm some of your fears and assure you that your Birth to Three team is going to work with you to develop the very best program that fits your child and your family’s unique and individual needs.

What are Autism Spectrum Disorders (ASD)?“Autism spectrum disorders are present from birth or very early in development and affect essential human behaviors such as social interaction, the ability to commu-nicate ideas and feelings, imagination, and the development of relationships with others. Although precise neurobiological mechanisms have not yet been estab-lished, it is clear that autism spectrum disorders reflect the operation of factors in the developing brain” (National Research Council, 2001). There are many estimates as to how often ASD occurs, with the Centers for Disease Control reporting an average of one in 110 children based on information about 8-year olds across a variety of U. S. surveillance sites (CDC, 2006). Autism is four to five times more common in boys than in girls. Family income, lifestyle, race, ethnicity, and education do not affect the chances of a child having ASD. (While it is not part of the IDEA classification or diag-nosis of ASD, it is noted that many children with ASD can also be picky eaters, have allergies, and or/have hyper- or hypo- sensitivities to sound, textures, or light.)

What Causes Autism Spectrum Disorders?The simple answer is that we don’t know. Researchers from all over the world are devoting considerable time and energy to finding the answer to this critical question. One of the things that we do know is that autism is not caused by bad parenting. Through twin studies, scientists have determined that autism is a genetically based condition. If one identical twin has autism then there is an 80-90% chance that the other twin will also be diagnosed with an autism spectrum disorder. For non-iden-tical twins, there is a 3-10% chance that both twins will develop autism spectrum disorder. The chance that siblings will both be affect by ASD is also approximately 3-10%. Scientists are unsure what, if any, environmental triggers may be involved in autism. (http://www.autismsciencefoundation.org/aboutautism.html). The Centers for Disease Control is working on one of the largest U.S. Studies to date, called the Study to Explore Early Development (SEED). SEED is looking at many pos-sible risk factors for ASDs and other developmental disabilities, including genetic, environmental, pregnancy, and behavioral factors. The study includes 2700 children ages 2-5 from six states (http://www.cdc.gov/ncbddd/autism/seed.html).

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What happens now? What is going to be different?The Connecticut Birth to Three System has programs that serve all eligible children (called general programs) and ones that only serve children with ASD. If you are cur-rently enrolled in a general Birth to Three program, your very first decision is whether to stay with your current program or transfer to an autism-specific program. Prior to 2008, there were no autism-specific Birth to Three programs in Connecticut. Our programs provided early intervention services to children with all kinds of delays. Many developed an expertise in working with children who had autism spectrum disorders. Today, all of our general programs continue to provide services to children who have autism spectrum disorders and their families. But because of the unique and highly individualized intensive programming a child with ASD often requires, some programs have difficulty putting together the right team of people for the number of hours required. The issue is not about whether they have the expertise to work with your child, but whether they have the right staff capacity at the moment you need it. We suggest talking to your service coordinator and the director of your Birth to Three program. Together, you will be able to determine what the best option is for your child.

The Guiding PrinciplesAll Birth to Three programs serving children with autism spectrum disorders are guided by a set of twelve core principles that reflect both the science of early inter-vention and a core group of values. Becoming familiar with these principles will help you gain an understanding of what services and supports will look like and how that may be different then the services you are currently receiving. As with many fields, the autism field uses words or jargon they may be unfamiliar to you. As we discuss these twelve core principles words that are particular to autism will be explained in the glossary. PRINCIPLE 1: The earliest possible start to intervention is essentialChildren with autism spectrum disorders who receive appropriate services earlier achieve better results. All children in Birth to Three who are at least sixteen months old are screened for ASD. Pediatricians are expected to screen for autism at 18 and 24 months of age. For children with an older sibling who has already been diagnosed with an autism spectrum disorder the team will be carefully observing that child’s development, particularly in the areas of social interaction, communica-tion development, and stereotypical, repetitive behaviors. They may also use other screening instruments that are available for younger children. The Birth to Three System will offer an autism assessment to the family of any child for whom there are “red flags” that might indicate ASD. If you wish to seek a diagnostic evaluation outside of the Birth to Three System, you are responsible for the costs. Please keep in mind that currently, Connecticut insurance law requires that in order to bill com-mercial health insurance plans for autism services, the diagnosis must be made by a physician, clinical psychologist, or clinical social worker.

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PRINCIPLE 2: Services must be individualized for children and familiesOne thing we know for sure about children with ASD, is that every child is unique. For that reason, every child’s plan must reflect that child’s needs, strengths and interests as well as the family’s concerns, priorities and resources. No two plans are exactly alike. Many families, providers, and media have assumed that getting a certain amount of direct service or a certain intervention approach was the key to achieving quality outcomes (See Principles 4 and 11). But what works for one child and one family, may not work for your family. Your IFSP team will work with you to develop a plan that includes outcomes and strategies that engage your child throughout his day and his daily routines. They will help you engage your child in all areas of development including learning to socialize appropriately with his peers. For example, for your family this might mean developing outcomes around how to get your child in and out of his car seat without a tantrum, how to keep him oc-cupied and engaged while you are sitting at a soccer game, and how to encourage him to play with children his age at the playground. Amount of direct service hours is not nearly as important as learning the ways to keep your child a part of normal family life. PRINCIPLE 3: Family involvement and participation is critical Families are the first and most important teachers in their child’s life. While you may not have any experience working with children with ASD, you are the expert on your child. The research shows that children learn best as they experience life with their family. Service providers may come and go, but you are the constant in your child’s life and his lifelong advocate. Your IFSP team will provide you with education, sup-port and guidance to help you develop the skills needed to help your child reach his or her fullest potential. We also understand you may feel anxious about your ability to help your child with-out any clinical expertise. You and your early intervention team will work together to continuously connect what happens during Birth to Three visits to what your child is doing every day. Birth to Three services are just a small portion of your child’s life. It is important for everyone to be involved and to participate in services. From child care providers to grandparents, parents, siblings, all of the important people in your child’s world will learn the skills to best help your child develop. Research has shown that an early intervention program that is closely tailored to family life, and has an active and involved family is much more likely to achieve quicker and long lasting results. While we do not expect you to be the primary provider of the specialized services that a child with ASD receives, we do expect you to partner with your team as we: •Plantheservicesyourchildneeds

•Instructandassistyourchildwithactivitiesofdailyliving

•Evaluatetheprogressyourchildismaking

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PRINCIPLE 4: Families have a right to evidence-based practicesBirth to Three is a program that falls under the jurisdiction of Part C of the Individuals with Disabilities Education Act (IDEA). This federal law mandates that early interven-tion services be “…based on scientifically based research, to the extent practicable, and are available to all infants and toddlers with disabilities and their families….” (20 U. S. C. 1435 (a)(2)). This means that families should expect that their services are based on intervention practices recommended by the National Autism Center’s National Standards Project (NSP) report (2009) and the National Professional Devel-opment Center on Autism Spectrum Disorders definition of evidence based practices for children with ASD. There are literally hundreds of intervention methods that have been used to improve the symptoms of ASD. Families who attempt to search for the best, most effective treatment for their child are faced with a confusing array of interventions. These interventions are often heavily promoted through the media, internet and other parents and marketed to families. Some methods have been found to be highly ef-fective. Other methods have been found to be much less effective. The NSP through a comprehensive and rigorous review of the scientific literature on children with ASD has determined that there is compelling scientific evidence that nine intervention be considered “established” and are recommended strategies for infants and toddlers. They are: 1. Antecedent Package (prompting)

2. Behavioral Intervention Package (Discrete Trial Training and Positive Behavioral Supports)

3. Joint Attention Intervention

4. Modeling

5. Naturalistic Teaching Strategies (e.g., Incidental Teaching)

6. Peer Training Package

7. Pivotal Response Treatments

8. Schedules

9. Augmentative and Alternative Communication You and your team will select the methods that best fit your child and family’s needs. For more information about each of these methods, see the Glossary. PRINCIPLE 5: Intervention is Based on a Developmental Curriculum Designed to Address the Specialized Needs of the Infant or Toddler with ASDThe instructional program that you and your team will develop will be based on widely accepted principles of child development as well as your child’s individual strengths while also addressing his or her unique needs. The curriculum needs concentrated or specialized instruction to address the core areas of ASD which are language, social interaction, play skills, and interests. The curriculum must include:

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1. Attending to and staying engaged in the environment

2. Using verbal and non-verbal communication such as words, gestures and vocalizations

3. Understanding and using language to communicate

4. Playing appropriately with toys;

5. Playful interactions with others;

6. Reciprocal or shared interactions with others;

7. Spontaneous interactions;

8. Making choices;

9. Following daily routines and variations in routines;

10. Addressing unusual sensory preferences and aversions PRINCIPLE 6: Intervention is Planned and SystematicThe strategies you and your team select to help your child will be carefully planned, focused, and consistent. They will involve assessing, planning, teaching and consis-tently measuring the progress of each intervention step. Every step of intervention will be carefully monitored to determine if what is being done is effective. This will be done by collecting data to measure the change in a behavior or skill over time. For example, if you are looking to reduce the frequency of tantrums your child has when being put in his car seat, data will be taken on the frequency of tantrums, how long the tantrums last, and how much support or prompting your child needs to get into his car seat. In order to use this data to determine if the intervention or strategy is effective the following must happen: 1. An assessment will be completed prior to the intervention

2. Outcomes and objectives will be written that are meaningful and measurable and specifically describe the desired behavior

3. Data will be taken prior to the intervention and be used as a baseline.

4. Steps or tasks to achieve the desired behavior will be defined and analyzed.

5. Teaching strategies and supports are identified listing where, when, with whom and the level of support needed.

6. Methods for motivating or reinforcing the desired behaviors are identified

7. Methods and timelines for measuring progress will be determined

8. Data will be taken and analyzed on a routine basis

9. Adjustments will be made on the interventions if needed after analyzing the results of the data

PRINCIPLE 7: Infants and Toddlers with ASD Should Have Regular and Deliberate Exposure to Typically Developing PeersChildren with ASD experience significant problems in developing meaningful social relationships, particularly with children their own age. Spending their days without any contact with their peers will only reinforce the difficulties they have. For tod-

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dlers this means setting up play dates, encouraging involvement with children in their child care setting or having fun and playful interactions with their siblings. Your team will help assist you in providing a setting that will encourage other children to engage in play with your child, even if your child’s behaviors discourage play. PRINCIPLE 8: Challenging Behaviors are Addressed Using Positive Behavioral Interventions and Supports (PBIS)Children with ASD often exhibit behaviors that create great frustration to people who interact with them. Behaviors may range from aggression, tantrums and self injury to repetitive or stereotypical behaviors, sometimes called stimulating behaviors or stimming. As family members, you are very aware of these behaviors that are particular to your child. They may even contribute to high levels of stress felt by you or others in your family. Positive Behavioral Interventions and Supports (PBIS) looks at your child’s strengths and needs. A team using PBIS will try to get to know the whole child so they can begin to figure out the reasons behind the behaviors. Once the team understands the reason for the behaviors, they can better understand what key strategies need to be put in place to keep the behavior from occurring. They will also look to replace the unwanted behaviors with new, desirable behaviors, with the ultimate goal being to help your child have positive interactions with others. PRINCIPLE 9: Intervention Should Focus on Developing Communication SkillsWhen we refer to communication skills we mean much more than simple verbal speech. A good and effective communicator uses verbal as well as non-verbal cues to engage listeners. Young children with ASD typically lack either verbal or non-verbal ability to communicate. Some toddlers may lack basic verbal communication (words) while others with ASD may have large vocabularies and/or the ability to mimic spoken language, but lack the skills to use language to communicate. For example, they may know the name of every dinosaur or be able to parrot every word you speak, or repeat TV commercials verbatim, but they will not be able to tell you that their oatmeal is too hot or the particular toy they’d like you to get from the shelf. Helping your child develop the skills to communicate and be understood by a variety of people will be a key part of your child’s program. PRINCIPLE 10: The Development of Social Relationships is Essential to Successful OutcomesIf there is one common thread that all children with ASD share, it is their inability to have appropriate social interactions with others and especially with typically developing peers. One of the primary goals of early intervention is to help your child develop the skills that will lead them to making friends with children their own age. To successfully target these skills, your child’s intervention must include; regular access to typical peers, thoughtful and meaningful social situations embedded throughout the day, the use of “social” toys (toys that encourage and teach appro-priate social interactions with others such as taking turns) multiple opportunities for social interactions throughout the day in a variety of settings (home and community) and intensive data collection in order to make continuous corrections to the plan.

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PRINCIPLE 11: Getting to Quality Outcomes is Not Just About Hours of Direct ServicesFor many years parents and families of young children with ASD assumed that getting a certain amount of hours of direct services was the key to achieving quality outcomes and even “cure” their child of autism. While this is a commonly held belief, the reality of this is questionable and often misleads parents. What is most relevant to achieving quality outcomes can be found in the five evidenced-based factors that are suggested below. Factor 1: Intensity. When young children are actively and appropriately engaged

in everyday routines we can assume that skill acquisition is occurring. Toddlers are most likely to engage in activities when interventions are delivered not just by professionals from Birth to Three but by adult family members, child care providers and other individuals who play an active role in a child’s life. It is also important to remember that very young chil-dren require ample time throughout the day for sleep and rest. They are simply not as “developmentally available” for the same level of intensive intervention as are older children.

Factor 2: Fidelity of intervention delivery. Selecting an “Established Intervention”

does not guarantee that your child will receive that approach unless it is implemented correctly. Make sure to question providers about their experi-ence with the intervention, how they determine if the intervention is being correctly implemented, and what the plans are if the outcomes expected from the intervention do not happen.

Factor 3: Social validity of goals. It is most important that objectives and goals are

met that have an immediate impact on your child’s quality of life. If, for example, a goal is to teach your child colors, there would be low social validity if your toddler could only name the color of the beads he sorted at a table. The social validity of this goal would be much higher if your child would be able to answer the question: “Do you want to wear your red pajamas or your blue pajamas?”

Factor 4: Comprehensiveness of intervention. New research indicates that if a child makes progress in only one developmental area (domain) it is unlikely to impact progress in other domains. This finding emphasizes the impor-tance of addressing all developmental areas of performance for children receiving early intervention services.

Factor 5: Collecting data and making decisions based on the results is the best way to achieve those outcomes that have the biggest impact on your child. Pouring services and hours into your child’s program without careful and deliberate examination of data has been shown to have harmful effects on both family functioning and child outcomes. Your child’s IFSP should be a reflection of the positive outcomes determined through data collection, not an arbitrary number of hours that you might have heard to be the “gold standard.”

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To summarize, the formula for achieving quality outcomes is:

(Intensity) X (Fidelity) X (Social Validity) X (Comprehensiveness) X(Data-based Decision Making) = Quality Outcomes

If any of these factors approaches “0”, then the sum or outcome will approach zero as well.

PRINCIPLE 12: The Transition from the Early Intervention Program to Preschool Special Education and Related Services Should be Well PlannedAs your child transitions from Birth to Three into the school system, you will notice significant differences in the service delivery model between the two systems. Change is often very hard for children with ASD particularly as they begin something new and different. That is why it is essential that you, your Birth to Three team, and your local school district begin planning for your child’s transition as soon as possible. When planning for your child’s transition the following are helpful:

1. Earliest possible referral to the local school district;

2. Earliest possible communication (with parental consent) to the local school district about your child’s strengths and needs;

3. Sharing details with the local school district of your child’s current Birth to Three plan and the strategies that have been successful;

4. Working closely with your team to ensure that your child’s transition goes smoothly.

Materials to Guide the Individualized Family Service Plan Planning Process for Children with Autism Spectrum DisorderBirth to Three suggests using a tool to help you identify and communicate how well your child does in common everyday experiences at home and in the community. One of these tools is called the “About Our “Child” Questionnaire, included as a center-fold in this booklet. This will help you to identify skills your child currently uses in common everyday activities and routines. It also helps to identify the skills that you would like your child to learn in these areas. Please show this to your service coordinator or IFSP team.

Another tool (on the next page) is a checklist provided for early intervention teams to guide the IFSP planning process for children with ASD in order to support the delivery of services that are comprehensive, individualized, evidence-based and of sufficient intensity:

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Questions to Guide the Individualized Family Service Plan Planning Process for Children with Autism Spectrum Disorder

QUESTION RESPONSE

1. Have assessment strategies been utilized to document the child and family needs identified in the IFSP that are:

a) Specific (observable, measurable, and valued by adult family members). YES NO

b) Functional (related to specific skills that help the child access everyday life) YES NO

2. Are there evidence-based strategies in place that:

a) address each area of need identified by the team? YES NO

b) | include functional outcomes addressing the defining characteristics of ASD (communication, social skills, and behavioral concerns)?

YES NO

c) specifically addresses the child and family being successful with daily routines (e.g., dressing, feeding, bedtime, community outings, etc.)?

YES NO

d) include strategies to equip family members with the infor-mation and skills needed to provide consistency in inter-vention when early intervention providers are not present?

YES NO

3. Has the IFSP team carefully considered the following taking into account the child’s developmental availability for intervention and the families dynamics and available resources:

a) What early intervention services are needed to implement the evidence-based practices? YES NO

b) Who will deliver the services? YES NO

c) Where the services will be provided? YES NO

d) When and how frequent the services will occur? YES NO

e) What available funding sources will be accessed YES NO

4. Are the proposed providers fluent with the evidence-based practices to be delivered? If not, what plans are in place to provide training, supervision or coaching for those providers?

YES NO

5. Is there a plan in place whereby multiple providers, if utilized, meet frequently to communicate, plan logically consistent services and review progress?

YES NO

6. Do the planned strategies include an ongoing data collec-tion system and clear decision-making guidelines regard-ing the continuation or modification of the plan that results in progress for meeting child and family outcomes?

YES NO

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Alternative or Complementary TreatmentsThere is a great deal of information available today on treatment options for young children with ASD. In addition to the evidence-based interventions previously noted in this Guideline, there are others that fall into a category of physiological and/or physical interventions. These are often referred to as alternative treatments or complementary treatments. These interventions are viewed as an addition to the existing services provided and supported by the Birth to Three System. Although the Birth to Three System neither provides these services, nor covers their cost, a service coordinator can assist a family in gathering necessary information on these treat-ment options.

Some of the concerns service providers, as well as families, have expressed regard-ing these treatments include:

1. There is a lack of scientific research and documentation on the effectiveness or potential side effects (physical or emotional) that may result from the treatment;

2. There are tendencies for some interventions to be either too narrow in focus or to claim that the intervention will affect all areas of development;

3. The financial impact on families who pursue treatments, is significant. Most treatments are not reimbursable by health insurance or, if they are, very little is covered;

4. There is a difficulty in finding qualified specialists to help implement and over-see treatment;

5. The family may have unrealistic and false expectations about the outcome of the intervention.

Families need to acquire as much information as possible before deciding to use any of these treatments. It is essential that these treatments be done under the guidance of qualified medical specialists or therapists with experience in ASD. These specialists may also be helpful in providing information on the effectiveness of the treatment based on other people whom they treat. With any new treatment of intervention, a family should set specific goals and objectives and should agree with the practitioner on a clear way of measuring success. If a treatment isn’t working, it should be modified or discontinued, no matter how convinced the practitioner is that it should work or the experience of others. Families need to keep in mind that participating in alternative treatments is very challenging and they will often require ongoing support to implement the treatment as well as data collection to measure effectiveness. In many cases, alternative treatments involve a change in a family’s lifestyle. There are no “quick fixes” and therefore treatments require ongoing super-vision and adjustments as well as family commitment. Most importantly, in order to determine if a treatment is effective, it is essential to participate in one at a time. Intervention with multiple treatments will not allow assessment of which treatment was actually successful.

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To assist parents or caregivers as they evaluate different alternative or complemen-tary treatments, below is a list of guidelines created by Dr. B.J. Freeman in her paper “Diagnosis of the Syndrome of Autism: Questions Parents Ask.” Autism Society of America, 1993

Principles of Evaluating these Treatments of Autism

1. Approach any new treatment with hopeful skepticism. Remember that the goal of any treatment should be to help the person become a fully functioning mem-ber of society.

2. Beware of any program or technique that is touted as effective or desirable for every person with autism.

3. Beware of any program that thwarts individualization and potentially results in harmful program decisions.

4. Be aware that any treatment represents one of several options for a person with autism.

5. Be aware that treatment should always depend on individual assessment infor-mation that points to it as an appropriate choice for a particular child.

6. Be aware that no new treatment should be implemented until its proponents can specify assessment procedures necessary to determine whether it will be appropriate for an individual with autism.

7. Be aware that debate over use of various techniques are often reduced to superficial arguments over who is right, moral and ethical and who is a true advocate for the child. This can lead to results that are directly opposite to those intended.

8. Be aware that new treatments have often not been validated scientifically.

Questions to Ask Regarding Specific Treatments:

1. Will the treatment result in harm to the child?

2. How will failure of the treatment affect the child and family?

3. Has the treatment been validated scientifically?

4. Are there assessment procedures specified?

5. How will we know the treatment is working?

6. How will the treatment be integrated into the child’s current program? Do not become so infatuated with a given treatment that functional curriculum, play and social skills are ignored.(45)

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Website Resources on Alternative or Complementary Treatments

Labels in parentheses ( ) indicate whether this is a resource for multiple treatments or a specific treatment.

American Music Therapy Associationwww.musictherapy.org (Music Therapy)

Autism Network for Dietary Intervention (ANDI)www.autismNDI.com (Diet)

Autism Research Institute (ARI)http://www.autism.com/ari (Multiple)

Autism Speakswww.autismspeaks.com/whattodo/treatments_non_standard.php (multiple)Autism Treatment Checklist (ATEC). This was developed by the Autism Research Institute as an on line evaluation tool to help in evaluating the different approaches to treatment.

www.healing-arts.org/children/ATEC.htm (Multiple)

Center for Visual Managementwww.autisticvision.com (Vision)

Gerlach, E. (2000). Autism Treatment Guide. Arlington, TX: Future Horizons Press.

Lewis, L. (2011). Special Diets for Special Kids Volumes 1 and 2. Arlington, TX: Future Horizons, Press.

The Padula Institute of Visionwww.padulainstitute.com (Vision)

Society for Auditory Intervention Techniques (SAIT)www.berardaitwebsite.com (Auditory Integration)

The Upledger Institutehttp://upledger.com/ (Cranial Sacral Intervention)

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Supports for FamiliesChildren with ASD present unique challenges to their families. No two families of children with ASD will require the same support and often the need for support changes over time. Family support goals on the IFSP are often as important as child developmental goals. Similarly, these goals should be evaluated over time and changed to reflect the needs of the child and family. Parents have shared that their need for support is quite significant during the time their child was first identified with an ASD.

The IFSP should reflect a wide range of family support outcomes.

These might include:

1. The need for information on ASD and intervention philosophies;

2. Opportunities to speak with other parents of children with ASD;

3. Support groups for parents of children with ASD;

4. Training on how to teach the child new skills or strategies to integrate the child’s intervention into daily routines;

5. Identifying appropriate childcare or respite support options;

6. Professional counseling support;

7. Support and information for siblings of children with ASD;

8. Support and information for extended family members;

9. Support for families to develop advocacy skills for their child with ASD.

10. Support at the time of transition out of the Birth to Three System or other transitions the family may experience.

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Organizations The Autism Research Institute (ARI)4182 Adams AvenueSan Diego, CA 92116Voice 619-281-7165Fax 679-563-6840www.autism.com/ari

Autism Society of America4340 East-West Highway, Suite 350Bethesda, MD 20814800-3-autismwww.autism-society.org

Autism SpeaksEast 33rd Street4th FloorNew York, NY 10016212-252-8584www.autismspeaks.org

Connecticut Autism Society (ASCONN)101 North Plains Industrial Rd. Suite 1Wallingford, CT 06492888-453-4975 www.asconn.org

Connecticut Autism Spectrum Resource Center (ASRC)101 North Plains Industrial Road Harvest Park, Bldg. AWallingford, CT 06492203-265-7717www.ct-asrc.org

CT FEAT – CT Families for Effective Autism TreatmentP.O. Box 370352 West Hartford, CT 06137-0352 860-571-3888www.ctfeat.org

Connecticut Parent Advocacy Center (CPAC)338 Main StreetNiantic CT 06357860-739-3089 V/TDD Toll Free 1-800-445-CPACwww.cpac-inc.org

Connecticut Family Support NetworkStatewide Coordinator: Jennifer Carroll877- 376-2329 or [email protected]/pages/ct-family- support-network.php

National Autism CenterMay Institute 41 Pacella Park DriveRandolph, MA 02368877-313-3833www.nationalautismcenter.org

National Early Childhood Technical Assistance CenterCampus Box 8040, UNC-CHChapel Hill, NC 27599-8040919-962-2001www.nectac.org/topics/autism/autism.asp

PATH (Parents Available to Help)Includes Parent-to-Parent and Family VoicesP.O.Box 117Northford, CT 06472800-399-7284www.pathct.org

State Education Resource Center (SERC)25 Industrial Park RoadMiddletown, CT 06457-1520800-842-8678www.ctserc.org

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Questions Commonly Asked by Parents 1. Q. My child has not had an evaluation for ASD. Will the Birth to Three

System pay for an evaluation?

A. If your child has not had an evaluation for ASD and screening indicates that the child is at-risk, Birth to Three will offer an assessment by an autism-specific program or your general Birth to Three program. The programs can also provide a DSM-IV diagnosis if one is needed for insurance billing or other purposes. All of these assessments are offered at no cost to par-ents. If you prefer to seek an evaluation outside of our program network, the cost would not be the responsibility of Birth to Three.

2. Q. Our 17 month old had an autism screening as part of his initial Birth to Three evaluation and the general Birth to Three program would like him to have further testing done by an autism-specific program. We recognize that he has delays and is different than other two-year-old children, but we think he is too young to be brought to a specialist for a diagnosis. We would prefer to wait another year to see how he develops. Is there any harm in waiting?

A. A family needs to make the decision with which they are the most comfort-able. What is most important is that you and your team are discussing your child’s individual needs and developing a plan to address his challenges. Further testing by an autism-specific program would occur in your home and would give a clearer picture of your child’s developmental needs but does not mean that you need to receive your Birth to Three services from an autism-specific program or receive more frequent services than you want. Should the evaluation by the autism-specific program indicate that your child has an autism spectrum disorder, the research is very clear that intervention should begin as early as possible to be most successful.

3. Q. My child was diagnosed by an expert in the field who does not live in Connecticut. During the evaluation, he recommended we hire a consultant outside of the Birth to Three System to consult with us on my child’s services. Will the Birth to Three System pay for this?

A. No, the Birth to Three programs in Connecticut are not obligated to hire an outside consultant. If a general program feels that they do not have the expertise you are looking for to provide services to your child, they will recommend that you enroll with one of the autism-specific programs.

4. Q. Can early intervention cure ASD?

A. There is no nationally accepted treatment that claims to cure ASD. Research does indicate, however, that with early and effective intervention, many children make substantial gains and enter Kindergarten in a regular education classroom with or without varying levels of support.

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5. Q. Who is qualified to work with a young child with ASD?

A. There is no specific credential or discipline that qualifies an individual to work with a child with ASD. We find that the complexity of behaviors and needs for children with ASD often require a team of individuals who work with the family. Team members could include any or all of the following: an early childhood special educator, an early intervention assistant or associ-ate, a speech/language pathologist, an occupational therapist or physical therapist, a psychologist or a Board Certified Behavior Analyst, and a social worker. It is important that the members of the team have adequate train-ing and experience in working with children with ASD.

6. Q. Will the Birth to Three System provide a discrete trial instruction program for my child?

A. Yes. Discrete trial instruction is an evidence-based intervention technique used within a framework of applied behavioral analysis. Your Birth to Three provider will assist you with implementing discrete trial instruction if it is determined to be appropriate based on your child’s needs and is identified as a strategy on the IFSP. This will typically be one component of the IFSP that also includes opportunities for generalization of skills to other settings, initiating communication, and social interaction with same-age peers.

7. Q. My child is not getting enough hours of service because we have a team meeting every month. Is there any way to stop having team meetings so he can get more services?

A. The exact pattern of service delivery is agreed upon by your family and your service coordinator is part of the IFSP process. The IFSP focuses on what is important to you as your child develops. Framing this conversa-tion in terms of the hours Birth to Three staff are working with your child may stand in the way of figuring out the best ways Birth to Three and your family can work together to meet the outcomes that are important to you. The point is not to receive hours of services but to make progress toward the outcomes you have identified. Your family and Birth to Three need to strike a balance, using meeting time to ensure the fidelity of the interven-tions that work well for your child and family and for making data-based decisions.

8. Q. Will the Birth to Three System pay for an alternative therapy such as auditory training, vision therapy or cranial sacral therapy for my child?

A. No. The Birth to Three System will assist families with finding information and resources on alternative or complementary treatments. Often these treatments are considered medical intervention, which are not covered by our system or they have not been established as evidence-based interven-tions by the National Autism Center.

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9. Q. What should I do if I am not satisfied with my child’s progress or program?

A. If at all possible, you should be funneling your concerns about your child’s programs through your service coordinator. This is the person who is most familiar with you, your child, your IFSP, and the services that are being delivered. If you have done this, or feel that it is not a viable option, you should contact the director of the program who provides your services. In addition, you may contact the Birth to Three Support Line (866-888-4188) or the Family Liaison (860)418-6136 to express your concerns. The Family Liaison can help you problem-solve with your provider and will inform you of ways to file a formal complaint if you choose. The Birth to Three System also provides formal mediation of differences between families and provid-ers or the option of a hearing by an impartial hearing officer. Your rights to this process are explained in the Family Handbook: Guide II Orientation to Services as well as a brochure entitled “Parent Rights Under IDEA Part C.” You may ask your service coordinator for a copy of either of these at any time and both are posted on the Birth to Three website at www.birth23.org/Especially for Families .

10. Q. What if I want services delivered by a program or particular provider that is not affiliated with the Connecticut Birth to Three System?

A. Your Birth to Three program is obligated to provide your child and family with appropriate, individually-designed evidence-based services that ad-dress your child’s needs and are designed to offer developmental ben-efit. The program may choose to use its own staff or may choose to use subcontractors to deliver those services. Who they use and how much they pay their subcontractors is their decision. If you have located a subcon-tractor that you would like them to use, you may suggest it. However, it is ultimately the program’s decision.

11. Q. What will happen to my child when he turns three years old and no longer receives services from the Birth to Three System?

A. All school districts in Connecticut are required to provide children ages 3-21 who require special education and related services with an appropriate program. In order to ensure that children have services and supports in place on their third birthday, planning and communication begins at least six months before the child turns three. The child will be referred to the local school district and a meeting will be scheduled to review the child’s services and progress. The school’s Planning and Placement Team will de-cide whether any additional evaluations are necessary to determine if the child is eligible for services from the school district. Unlike Birth to Three, a DSM-IV diagnosis of autism does not guarantee that the child is eligible for special education. Neither a DSM-IV diagnosis nor the fact that a Birth to Three evaluation determined that your child met the classification of autism

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under the IDEA mean that the school district will automatically agree that your child requires special education and related services.

12. Q. Can I run errands while my Birth to Three team is at my home?

A. No, you or your child care provider must be in the house at all times while services are being delivered. You are an important part of your child’s team and it is key that you understand and participate in each session at your home. You will need to understand what your child is working on so that when your team is not in your home you will feel comfortable integrating the strategies they are working on into your daily routines. It is understand-able that you may periodically need to attend to other children, answer the phone or step away from the session for another reason. We ask that you always be nearby within “earshot” of the session.

13. Q. The idea of having strangers in my house feels awkward to me. Do I have to make lunch for my B23 team if they come at lunch time? Do I need to clean up before they arrive? I feel like my whole family has to be on their best behavior while they are here.

A. It is only natural to feel awkward about having a group of strangers enter your home for extended periods of time. As services begin your service coordinator and the rest of your team will talk to you about their expecta-tions. They will explain what the time they spend in your house will look like. They do not expect to be fed, nor do they want you to feel you must clean up your home before they come. As you become familiar with your team, things will become somewhat more comfortable for you and your family, but the awkwardness never goes away entirely. Your Birth to Three providers are not exactly guests, social acquaintances or friends. Yet the relationship you have with them will become very important to you and your child. Consider them “friendly professionals” who work with you in your home to help your child develop to his best potential.

14. Q. Who me? How can I be expected to practice speech therapy, for example, if I am not trained as a speech therapist? I feel so inadequate around these highly trained professional staff.

A. Everyone who works in Birth to Three, including speech and language pathologists, has expertise in their specialty, but you are the expert on your child and his life. The therapist’s role is to teach you ways to help your child grow and develop. Research shows the practicing you do with your child during your daily routines will ultimately have the greatest impact on your child achieving the goals you and your team have chosen.

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Medical Follow-Up for Children Identified with ASDThis information is included to help you know what to expect in the course of medi-cal follow-up for children with ASD. It may provide guidance about what kinds of questions to ask in order to understand and enhance the medical follow-up.

It is important to include the following in any developmental or family history:

• Thelevelofdevelopmentalskillsobtained

• Whethertherewereanyregressionsinskilldevelopment,especiallyinlan-guage or social skill area

• Adescriptionofthequalityofthechild’srelationshipsandplay

• Unusualeatingorfeedingbehavior

• Unusualbehaviorsincludingmotorstereotypes

• Unusualsensorysensitivitiesorreactions

• Historyofmedicaleventssuchasheadtrauma,infection,birthdifficulty

• Historyofstaringepisodesorseizuredisorder

• Historyofearinfections,gastrointestinaldisturbances,orallergies

• FamilyhistoryofASD,intellectualdisabilities,AttentionDeficitHyperactiveDisorder (ADHD), learning disabilities, Fragile X Syndrome, Tuberous Sclerosis, anxiety or depressive disorders or hearing impairment.

All referrals to medical specialists should be made through the child’s primary health care provider. Medical follow-up is very specific to the unique profile and needs of the child and family. • AudiologicalassessmentincludingBrainstemEvokedResponse(BSER)ifchildis

not otherwise testable

• CompleteBloodCount(CBC)

• Leadlevelscreening

• Dermatological/SkinexamtoruleoutTuberousSclerosis

• FragileXtestinginpresenceofsignificantlydelayeddevelopmentandif maternal family has history of learning disabilities, intellectual disabilities or attention disorders

• Genetictesting(chromosomalevaluation)inpresenceofsignificantdelayeddevelopment, unusual facial or body features, or family history of ASD

• Referralforneurologicassessmentinpresenceofstaring,seizures,devel-opmental regression. This should include evaluation of head circumference, muscle tone and motor asymmetries. The neurologist may order a 24 hour EEG if sleep deprived or a MRI if EEG is abnormal

• Referraltogastroenterologistinpresenceofhistoryofgastrointestinaldistressincluding chronic diarrhea, vomiting, constipation or abdominal pain.

• Referraltoallergistifsignificanthistoryoffoodallergiesoreczemainchildorvery strong history of family history of allergic disorders

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• Referraltonutritionisttooversee“elimination”dietiffoodallergyisdiagnosed.

Diet therapies most commonly involve the elimination of milk or wheat products from the diet. It is suggested that some young children with autism are allergic to milk and/or wheat and that eliminating these foods from the diet can result in an improvement in the symptoms of autism. Most of the literature focuses on elimi-nating cow’s milk or casein and/or wheat products or gluten. If food allergies are documented, the child should be treated with standard allergy testing methods, including elimination diets. Since children with ASD often only eat a very small num-ber of foods, it is important that a nutritionist be consulted before beginning any diet therapy, since one could be eliminating a child’s only source of important nutrients.

Other Family ResourcesBooks Written by Family Members and Individuals with Autism

Barron, J & Barron, S. (2002). There’s a Boy in Here. Arlington, TX: Future Horizons, Inc.

Cutler, E. (2004) Thorn in My Pocket: Temple Grandin’s Mother Tells the Family Story. Arlington, TX: Future Horizons, Inc.

Garvin, E., (2010) How to be a Sister: A Love Story with a Twist of Autism. New York, NY: The Experiment, LLC.

Gill, Barbara (1997) Changed by a Child: Companion Notes for Parents of a Child with a Disability. New York: Doubleday.

Grandin, T. (2010). Thinking in Pictures: My Life with Autism (Expanded Edition). Arlington, TX: Future Horizons, Inc.

Grandin, T. and Scariano, M. (2008). The Way I See It: A Personal Look at Autism and Aspergers. Arlington, TX: Future Horizons, Inc.

Grandin, T. (1986). Emergence: Labeled Autistic. Norvato, CA: Arena Press

Kephart, B. (1999). A Slant of Sun One Child’s Courage New York: W.W. Norton

Karasik, P. and Karasik, J. (2003) The Ride Together: A Brother and Sister’s Memoir of Autism in the Family. New York, NY: Washington Square press.

Maurice, C. (1994). Let Me Hear Your Voice. New York: Random House, Inc.

Notbohm, E. (2005) Ten Things Every Child with Autism Wishes You Knew. Arlington, TX: Future Horizons, Inc.

Osteen, M., (2010) One of Us: A Family’s Life with Autism. Columbia and London: University of Missouri Press

Schulze, C.B., (1993). When Snow Turns to Rain: One Family’s Struggle to Solve the Riddle of Autism. Rockville, MD: Woodbine.

Stehl, A., (1997). The Sound of a Miracle. New York: Avon Books.

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Williams, D., (1999). Nobody Nowhere: The Extraordinary Autobiography Of An Autistic. London: Jessica Kingsley Publishing

Williams, D., (1994). Somebody’s Some-where: Breaking Free From the World of Autism. New York: Three Rivers Press.

Books for Kids

Amenta, C.A., (1992). Russell is Extra Special A Book about Autism for Chil-dren. New York, NY: Magination Press.

Bleach, F. (2001). Everybody is Differ-ent: A Book for Young People Who Have Brothers or Sisters with Autism. London: The National Autistic Society

Brown, T., (1984). Someone Special Just Like You. New York, NY: Holt & Co.

Elder, J., (2005) Different Like Me: My Book of Autism Heroes. London and Philadelphia: Jessica Kingsley Publishers

Gaynor, K. (2009) A Friend Like Simon. Dublin, Ireland: Special Stories Publishing

Katz, I. & Rituo, E. (1993). Joey and Sam. Northridge, CA: Real Life Story Books.

Lears, Laurie, (1998). Ian’s Walk, A Story about Autism. North Carolina Bookstore.

Martin, Ann (1990). The Baby Sitter Club: Kristy and the Secret of Susan. NY: Scholastic, Inc.

Messner, A.B., (1996) Captain Tommy. Stratham, NH: Potential Unlimited Publishing.

Shally, C., (2007). Since We’re Friends: An Autism Picture Book. Centerton, Arkansas: Awaken Specialty press

Tourville, A.D., (2010) My Friend Has Autism. Mankato, MN: Coughlan Pub-lishing

Online Videos

Autism Internet Modules – Developed by the Ohio Center for autism and Low Incidence in partnership with four other organizations. www.autisminternetmodules.org

Autism Key Video Librarywww.autismkey.com/autism_videos

Autism Speaks Video Glossarywww.autismspeaks.org/video/glossary.php Autism Speaks Videoswww.autismspeaks.org/video/index.php

Rethink Autism web-based teaching tutorials. Requires a monthly feewww.RethinkAutism.com

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Glossary of Terms

TERM DEFINITION

Augmentative and Alternative Communication

Using a form of communication other than speech such as sign language, natural gestures, photos, pictures, or symbols

Antecedent Package This includes the various types of prompts, physical, visual, and verbal and how they are used

Discrete Trial Training Breaking skills into the smallest steps, teaching each step intensively until it is mastered, providing lots of repetition and reinforcement.

Domains Areas of development such as communication, motor, behavior, cognitive, and social/emotional

Evidence-based Practices Interventions for which research has provided evidence of effectiveness

Fidelity Using a particular method exactly as it was intended to be used.

IFSP A written plan describing the outcomes you want for your child and family and the services and supports used to reach those outcomes.

Incidental Teaching A structured form of presenting learning opportunities in the child’s natural environment using the child’s natural motivation and reinforcers.

Joint Attention When two people are interested in the same thing

Modeling Showing someone else what the activity or behavior should be

Positive Behavioral Supports

An approach that emphasizes preventing negative be-haviors and decreasing any that occur by analyzing their function and using positive approaches only.

Peer Training Other children can be taught to initiate play with children with ASD through sharing, offering assistance, suggesting play ideas, and showing affection.

Pivotal Response Training A form of Applied Behavioral Analysis, PRT targets pivotal areas of a child’s development such as motivation, response to multiple cues, self-management, and social initiations.

Visual Schedules A daily or weekly visual schedule using pictures or objects can let the child know what activities will occur and in what sequence.

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