Testing by Ken Magas Design, Inc.

Family Resource Guide Guide

Print Autism Resource Guide 12-14-20.indd 1

12/14/20 10:55 AM

Dear Parents and Caregivers, Maybe you were the first person to mention the word “autism” about your child. Maybe it was a doctor, therapist, or friend. No matter who said it, this word has now entered your world. Whether your child currently has a diagnosis, is pending a diagnosis, or you have concerns about development and question if your child may have autism, you are entering into a new journey. You may be going to go through a range of emotions, and this is completely normal. There is no “right” way to process your feelings. No one can tell you how to feel, or how long to feel this way. Anger, confusion, relief, sadness, grief, denial, and so many more emotions are a natural part of the process of accepting autism as part of your world. If your child indeed receives this diagnosis, the time to start working with your child is NOW. The earlier a child receives intervention, the better their long term prognosis. Young children are able to learn new ways of dealing with struggles and are able to adapt in ways that get more challenging as they get older. In the beginning, you will spend a lot of time and effort thinking about autism. This may take up more energy than you anticipate. Remember to take care of yourself through this process. Getting enough sleep, eating, and exercise are just a few ways to practice self-care. Make sure that you, as the adult, are mindful that you are an equal part of the family, and your needs are important as well. The silver lining of this journey is that you do not have to figure it out alone. This guidebook will introduce you to just some of the programs available to you, but remember that there are thousands of families each day who navigate the waters of autism. Some days the waters are calm; some days there are choppy seas. But every day is a new day and the more you learn, the more you are able to advocate for your child. Sincerely, Amy DeShazo Proud parent of a son with autism

E S

Guiding Parents to Services

Print Autism Resource Guide 12-14-20.indd 2

12/14/20 10:55 AM

TABLE OF CONTENTS Part One: Does My Child Have A Delay?............................................. 5 Is My Child Developing Appropriately?..................................................6 What to Do if Your Child Shows Signs of a Delay............................12 Questions About Getting a Diagnosis..................................................13

Part Two: After Receiving A Diagnosis of ASD...............................15 Intervention Options For Your Child....................................................16 Other Health Related Concerns.............................................................19 Taking Care of You........................................................................................20 Local Agency Referral Information........................................................22 Useful Website..............................................................................................24 References.......................................................................................................25

This guide has been developed to help families navigate the challenging and often confusing journey of parenting a child with autism.

Print Autism Resource Guide 12-14-20.indd 3

12/14/20 10:55 AM

Is My Child Developing Appropriately? In the tables below, developmental milestones are listed for children with typical development, alongside behaviors that may be signs of autism spectrum disorders (ASD). Learning developmental milestones can help parents know what to expect from their children.

Introduction

While looking at observable behaviors, please keep in mind that development is individual and these are the approximate age ranges to observe the expected behaviors for all children. Every child is different, even among siblings. Your child’s environment, family and experiences contribute Thank you for investing in your child. By taking the time to read to their development. If you are concerned, please talk to your child’s pediatrician as soon as this guide, you are already taking steps that will benefit your family. possible. The earlier concerns are addressed, the better the long-term prognosis is for the child, Autism is a journey, and no journey is completed all at once. This whether the delay is indeed autism or something else. guide is designed to be a map of sorts, as you take some early steps. Allow yourself time to chart your course - think about your needs and the needs of your child. In Part One, you will learn about typical child development and what behaviors might indicate that your child has a delay. This section will also give you resources for help. Not all children with a delay have autism; but for all children with delays, including those with autism, the earlier they receive help, the better their Flags for Autism future (and yours) will be. It is important to know Red where to turn UNDER 12 MONTHS Typical Development Spectrum and how to take action. This section will help you with that. Disorder (ASD) • Babbling or coos and smiles in • Tends not to turn to someone Social Interaction In Part Two, families who have received a diagnosis of autism response

calling their name and seems not

spectrum disorder (ASD) can learn more about intervention to hear or be interested; seems to • Turns head and pays attention hear environmental sounds better strategies and resources are targeted towards soundsthat and voices or whereto autism. Autism is a than human voices you are looking and pointing pervasive disorder and recognizing the signs and ACTING on it is • Fails to look where someone is • Shows interest in faces for your child. While this guide the first step towards advocating pointing does not list every available resource, it provides a good basic • Absent facial expression, such as overview for families in Mecklenburg county. Working withsmiling or upset/scared decreased programs, such as Guiding Parents to Services, willface help connect you with the additional information that you need to serve the • Cries differently for different needs • Delayed and infrequent sounds Communicationneeds of your precious child. of speech (e.g.unique hungry and vs. tired) • Makes eye contact and maintains for

• Limited eye contact and may not look where another is looking

• Responds to “no” and simple directions (e.g. “Come here”) and says one or two words

• Does not wave bye-bye

• Join to sound/rhythm by making or repeating sounds

• Attending to unusual objects or patterns

• Explores different toys and/objects with fingers and mouth

• Over- or under-reactions to stimulation

• Show physical reaction when excited

• Repeats a movement or routine over and over

We hope that youobjects find this guide moving (even for helpful. a short time)

Behavior/Interests

Autism Spectrum Disorder Pervasive 6 4

Autism is ain neurodevelopmental defined bylength persistent in social Appearing early childhood anddisorder remaining for the of andeficits individual’s life. communication and social interaction, accompanied by restricted, repetitive Advocate patterns of behavior, interests, or activities. A person who pleads another’s cause, or who speaks or writes in support of something.

Print Autism Resource Guide 12-14-20.indd 4

12/14/20 10:55 AM

It may be upseting or scary to discover a delay in development. Deep breath... you can do this.

12- 24 MONTHS

Typical Development

Part One:

Red Flags for Autism Spectrum Disorder (ASD)

Does My Child Have A Delay?

Social Interaction

• Pretend play by using gestures, words and new actions • Stays active and engaged during activities and monitors what you are paying attention to • Talks with you about a topic he/she is interested in, tells about his/her feelings and asks questions • Can have short reciprocal conversation (back and forth)

• Lack of imitation • Poor emotional modulation

Communication

• Combines sounds, gestures and words to tell what he/she is thinking • Starts to imitate new simple words & actions • Uses words to name objects, pictures, people, animals and starts to combine two words to convey different meanings • Understands simple pronouns (me, you, my)

• Rarely/never points • Absent or unusual use of gestures, expression, or vocal quality to communicate • Delayed speech • Early signs of developmental regression

Behavior/Interests

• Join to sound and rhythm plays by making or repeating sounds • Explores different toys and/objects with fingers and mouth (getting ready for picking a favorite toy while playing with others too) • Show physical reaction when excited

• Play routines are limited to a single action or are imitations always completed in the same way • Does not demonstrate joint attention

Other

• Has a regular sleep schedule • Eats an increasing variety of foods

7 5

Print Autism Resource Guide 12-14-20.indd 5

12/14/20 10:55 AM

Is My Child Developing Is My Child Developing Appropriately? Appropriately? In the tables below, developmental milestones are listed for children with typical development, alongside behaviors that may be signs of autismare spectrum disorders (ASD). In the tables below, developmental milestones listed for children with Learning typical development, developmental milestones canbe help parents know what todisorders expect from their children. alongside behaviors that may signs of autism spectrum (ASD). Learning developmental milestones can help parents know what to expect from their children. While looking at observable behaviors, please keep in mind that development is individual and these are the approximate ranges toplease observe theinexpected for all While looking at observableage behaviors, keep mind thatbehaviors development is children. individualEvery and child isare different, even among siblings. child’s environment, family andfor experiences contribute these the approximate age rangesYour to observe the expected behaviors all children. Every to their development. If you are concerned, please talk to yourfamily child’sand pediatrician as soon as child is different, even among siblings. Your child’s environment, experiences contribute possible. The earlier concerns are addressed, the better long-term prognosis isas for the as child, to their development. If you are concerned, please talk tothe your child’s pediatrician soon whether the is concerns indeed autism or something else. the long-term prognosis is for the child, possible. Thedelay earlier are addressed, the better whether the delay is indeed autism or something else.

UNDER 12 MONTHS UNDER 12 MONTHS SocialInteraction Interaction Social

Typical Development Typical Development Babbling or or coos coos and and smiles smiles in in •• Babbling response response

• Turns head head and and pays pays attention attention • Turns towards sounds sounds and and voices voices or or where where towards you are are looking looking and and pointing pointing you • Shows interest in faces • Shows interest in faces

Red Flags for Autism Spectrum RedDisorder Flags for(ASD) ASD • Tends not not to to turn turn to to someone someone • Tends calling their their name name and and seems seems not not calling to hear hear or or be be interested; interested; seems seems to to to hear environmental environmental sounds sounds better better hear than human human voices voices than • Fails to to look look where where someone someone is is • Fails pointing • Absent facial facial expression, expression, such such as as • Absent decreased smiling or upset/scared face face

Communication Communication

• Cries differently for different needs • Cries differently for different needs (e.g. hungry vs. tired) (e.g. hungry vs. tired) • Makes eye contact and maintains for Makes eye contact and for • moving objects (even formaintains a short time) moving objects (even for a short time) • Responds to “no” and simple directions Responds tohere”) “no” and directions • (e.g. “Come andsimple says one or (e.g. words “Come here”) and says one or two two words

Behavior/Interests Behavior/Interests

• Joins in with sound and by rhythm activities • Attends to to unusual objects or or • Join to sound/rhythm making or • Attending unusual objects by making sounds or repeating sounds patterns repeating patterns • Explores different toys and/objects • Over- or under-reactions to • Explores different toys and/objects • Over- or under-reactions to with fingers and mouth stimulation with fingers and mouth stimulation • Shows physical reaction when excited • Repeats a movement or routine • Show physical reaction when excited Repeats movement or routine • over and aover over and over

• Delayed and infrequent sounds of • Delayed and infrequent sounds speech of speech • Limited eye contact and may not look Limitedanother eye contact and may not • where is looking look where another is looking • Does not wave bye-bye • Does not wave bye-bye

Autism Spectrum Disorder 6

Autism is a neurodevelopmental disorder defined by persistent deficits in social communication and social interaction, accompanied by restricted, repetitive patterns of behavior, interests, or activities.

Print Autism Resource Guide 12-14-20.indd 6

12/14/20 10:56 AM

It may be upseting or scary to discover a delay in development. Deep breath... you can do this.

12- 24 MONTHS 12-24 MONTHS SocialInteraction Interaction Social

Communication Communication

Behavior/Interests Behavior/Interests

Other Other

Typical Development Typical Development • Pretend play using gestures, • Pretends toby play by using gestures, words and new actions words and new actions • Stays active and engaged during • Stays active and engaged during activities and monitors what you are activities and monitors what you are paying attention to paying attention to • Talks with you about a topic he/she • Talks with you about a topic they is interested in, tells about his/her are interested tells about their feelings and asksin, questions feelings and asks questions • Can have short reciprocal

Red Flags for Autism SpectrumRed Disorder (ASD) Flags for ASD • Lack ofof imitation • Lack imitation • Poor emotional modulation • Poor emotional modulation

conversation (back and forth) • Can have short reciprocal conversation (back and forth) • Combines sounds, gestures and • Rarely/never points words to tell what he/she is thinking or unusual use of gestures, • Combines sounds, gestures and words • Absent • Rarely/never points • Starts towhat imitate new words expression, or vocal quality to to tell they aresimple thinking • Absent or unusual use of gestures, & actions communicate • Starts to imitate new simple words & expression, or vocal quality to • Uses words to name objects, pictures, • Delayed speech actions communicate people, animals and starts to combine • Early signs of developmental regression two words to convey different • Uses words to name objects, pictures, • Delayed speech meanings people, animals and starts to combine • Early signs of developmental regression two words tosimple convey different meanings • Understands pronouns (me, you, my) • Understands simple pronouns (me, you, my) • Join to sound and rhythm plays by • Play routines are limited to a single making or repeating sounds action or are imitations always • Joins in with sound and rhythm activities completed • Play routines are limited in the same wayto a single • Explores different toys and/objects with by making or repeating sounds action or are imitations always fingers and mouth (getting ready • Does not demonstrate joint attention completed in the same way for picking adifferent favoritetoys toy while • Explores and/objects playing with others too) (getting ready • Does not demonstrate joint attention with fingers and mouth for picking a favorite while playing • Show physical reactiontoy when excited with others too) • Has a regular sleep schedule • Shows physical reaction when excited • Eats an increasing variety of foods • Has a regular sleep schedule • Eats an increasing variety of foods

• May be unable to self-soothe or has sleep disturbances

7 7

Print Autism Resource Guide 12-14-20.indd 7

12/14/20 10:56 AM

24-36 MONTHS Social Interaction

Typical Development • Plays mainly beside other children,

but is beginning to include other children, such as in chase games • Copies others, especially adults and older children (words and pretend actions can be observed during play time or conversations) • Shows more and more independence in daily routine (separate easily from their parents)

Red Flags for ASD • Prefers to be alone; appears aloof • Has difficulty interacting with other children and initiating conversation or play with others • Does not want physical contact (cuddling, touching, hugging) • Makes little or no eye contact

• Starts to have “own things” (Understand the concept of “mine” and “yours”)

Communication

• Knows names of familiar people and body parts and can point to pictures of them

• Has little or no speech and sometimes is not responsive to verbal cues

• Says sentences with 3 to 5 words and carries on a conversation using 2 to 3 sentences

• Unusual rhythm of vocalization (such as rate, intonation, pitch, stress and inflection) or repeats sounds, words, or phrases

• Understands words like “in,” “on,” and “under”; plurals and pronouns

• May not understand instructions and/ or may take longer to respond

• Follow instructions with 2 or 3 steps

• Has difficulty understanding and interpreting facial expressions, body language and emotions (of self and/or others) • Difficulty expressing needs and may use negative behavior instead of words • Laughs, cries, or shows distress for reasons not always apparent to others

Behavior/Interests

• Gets excited when with other children • Expresses affection openly/ spontaneously

• Lack of sharing interest or enjoyment • Strong restricted and persistent interests

• May show defiant behavior

• Exhibits inappropriate attachments to objects

• Enjoy working with 3-4 piece puzzles

• Repetitive or obsessive play

• Can sort objects by shape and color

• Displays self-stimulatory behaviors • Has tantrums or “meltdowns” • Has difficulty transitioning from one activity to another • Insists on sameness and is resistant to change

FACT Autism is not caused by how you parent, but progress can be made by taking an active approach.

Print Autism Resource Guide 12-14-20.indd 8

12/14/20 10:56 AM

3-4 YEARS Social Interaction

Typical Development • Would rather play with other children than by themselves and demonstrates social skills when interacting with other children (turn taking, conflict resolution, sharing, offer help) • Shows ease and comfort in their interactions with familiar adults • Expresses a range of emotions with their face, body, vocal sounds, and words and describe reasons for their feelings

Red Flags for ASD • Prefers playing alone than playing with others • Doesn’t share well with others, take turns or participate in pretend play • Difficulty being soothed or comforted • Doesn’t like or actively avoids physical contact • Isn’t interested or doesn’t know how to make friends • Doesn’t make facial expressions or makes inappropriate expressions • Has difficulty expressing or talking about their feelings or understanding other people’s feelings

Communication

• Uses more than one word for the same object and use words for parts of objects • Makes up names for things using words they know (e.g., dog doctor for veterinarian)

• Difficulty forming sentences • Repeats words and phrases • Doesn’t answer questions appropriately or follow directions • Flat vocal tone or sing song voice

• Communicates in longer sentences and use more conventional grammar in their home language • Sings a song or says a poem from memory such as the “Itsy Bitsy Spider” or the “Wheels on the Bus”

Behavior/Interests

• Enjoys doing new things, tries new activities and attempts new challenges

• Persistent, severe tantrums

• Talks about likes, interests, and has favorites

• Performs repetitive motions (flaps hands, rocks back and forth, spins)

• Expresses a sense of belonging to a group

• Lines up toys or other objects in an organized fashion

• Shows awareness that their actions affect others

• Gets upset or frustrated by small changes in routine • Plays with toys the same way every time • Likes certain parts of objects (often wheels or spinning parts) • Has obsessive interests

Other

• Engages in activities that require hand-eye coordination

• Irregular eating

• Dresses and undresses themselves with occasional assistance

• Unusual safety awareness (Overly fearful to fearless Impulsivity)

• Irregular sleeping habits

Print Autism Resource Guide 12-14-20.indd 9

12/14/20 10:56 AM

5 YEARS Social Interaction

Typical Development • Wants to please and be like friends;

plays and interacts cooperatively with other children (works on projects together, exchange ideas)

• Prefers playing alone than playing with others • Doesn’t share well with others, take turns or participate in pretend play

• Forms positive relationships with new teachers or caregivers over time and seeks out trusted teachers and caregivers as needed

• Difficulty being soothed or comforted

• Explains reasons for their feelings that may include thoughts and beliefs as well as outside events

• Isn’t interested or doesn’t know how to make friends

• Communicates understanding and empathy for others’ feelings

Communication

Red Flags for ASD

• Uses a larger vocabulary for talking about different feelings (“I’m frustrated with that puzzle!” “I’m excited about our trip.”) • Uses language effectively to continue conversations with familiar adults and to influence their behavior (ask for help, ask an adult to do something)

• Doesn’t like or actively avoids physical contact

• Doesn’t make facial expressions or makes inappropriate expressions • Has difficulty expressing or talking about their feelings or understanding other people’s feelings • Difficulty forming sentences • Repeats words and phrases • Doesn’t answer questions appropriately or follow directions • Flat vocal tone or sing song voice

• Speaks clearly; makes requests clearly and effectively most of the time • Speaks and tells a simple story in full sentences that are grammatically correct most of the time (uses future tense)

Behavior/Interests

• Sticks with tasks even when they are challenging • Chooses to spend more time on preferred activities, and expresses an awareness of skills they are developing • Expresses awareness that they are members of different groups (e.g., family, preschool class)

Other

• Persistent, severe tantrums • Performs repetitive motions (flaps hands, rocks back and forth, spins) • Lines up toys or other objects in an organized fashion • Gets upset or frustrated by small changes in routine

• Shows awareness that their behavior can affect the feelings of others

• Plays with toys the same way every time

• More likely to follow social rules, transitions, and routines that have been explained

• Likes certain parts of objects (often wheels or spinning parts)

• Transitions independently from active to quiet activities most of the time

• Usually is not physically active

• Has obsessive interests

Print Autism Resource Guide 12-14-20.indd 10

12/14/20 10:56 AM

Developmental Chart Terms Emotional Modulation A childâ&#x20AC;&#x2122;s ability to respond to sensory input, and then adjust their emotions and behavior to the demands of their surroundings.

Developmental Regression When a child loses an acquired function or fails to progress beyond a period of relatively normal development.

Joint Attention Spontaneously shifting attention between an object of interest and another person using gestures to draw othersâ&#x20AC;&#x2122; attention to objects.

Self-Stimulatory Behaviors Repetitive movements or posturing of the body providing sensory input as a means of communicating or to self-soothing when wary or anxious. Examples include hand flapping or rocking.

Meltdown An intense, involuntary reaction to sensory overwhelm in which a child is unable to be consoled.

FACT People with autism are able to learn and develop new skills.

Print Autism Resource Guide 12-14-20.indd 11

12/14/20 10:56 AM

Is My Child Developing What to Do if Your Child Shows Appropriately? Signs of a Delay In the tables below, developmental milestones are listed for children with typical development, alongside behaviors that may be signs of autism spectrum disorders (ASD). Learning Parents and professionals sometimes want to “wait-and-see” when there are concerns about a developmental milestones can help parents know what to expect from their children. child’s development. You may not want to label your child and there are hopes that the child is a late bloomer will catch up. Waiting for a child to catch up,that however, wastes valuable time,and While lookingand at observable behaviors, please keep in mind development is individual and we know that early intervention is the best way to help your child learn those skills they are these are the approximate age ranges to observe the expected behaviors for all children. Every struggling with; it is the best hope for the future of any child with ASD. Early intervention will child is different, even among siblings. Your child’s environment, family and experiences contribute provide benefits that If may gained if aplease wait-and-see approach taken. to their development. younot arebe concerned, talk to your child’sispediatrician as soon as possible. The earlier concerns are addressed, the better the long-term prognosis is for the child, If your child showing any delay inor development, contact the following programs for further whether the is delay is indeed autism something else. assessment; parents may self-refer with no physician referral needed:

FOR CHILDREN BIRTH TO THREE YEARS

FOR CHILDREN THREE+ YEARS

Mecklenburg County Children’s Developmental Services Agency (CDSA)

Charlotte-Mecklenburg Schools (CMS)

704-336-7130 or fax 704-336-7112

Bright Beginnings and NC Pre-K: 980-343-5950

CDSA is part of the statewide North Carolina

The Exceptional Children’s Program serves children

UNDER 12 MONTHS

Exceptional Children’s Program: 980-343-2720

Red Flags for Autism Spectrum Disorder (ASD)

Typical Development

• Babbling or coos and smiles in three years • Tends not may to turn to someone Infant-Toddler Program. CDSA provides services at least old who be developmentally Social Interaction response callingprovided their name and seems not to families with children birth to three years of delayed. An evaluation, at no cost, must be to heareligibility or be interested; seems to age who may have delays in• development or have completed to determine and programing. Turns head and pays attention sounds better certain medical conditions. Early intervention It or is awhere good idea tohear beginenvironmental the enrollment process towards sounds and voices than human voices professionals work with caregivers build their before their third birthday when possible. For you areto looking and pointing capacity to enhance their child’s development. children enrolled•with CDSA, your service coordinator Fails to look where someone is • Shows interest in faces will help with the transition process. Evaluations and service coordination are provided pointing at no charge to families. Other services are • Absent such as provided on a sliding scale fee. Medicaid and Bright Beginnings and NCfacial Pre-Kexpression, programs serve decreased smiling private insurance are billed with family permission. children who will be four years old onororupset/scared before face August 31. These programs may include special education students receiving various levels of sup• Cries differently for different Delayedevaluation and infrequent sounds Communication port.needs A separate •eligibility is required. of speech (e.g. hungry vs. tired) CMS does ASD, your and childmay maynot • Makes eye contact and maintains fornot diagnose • Limited eyebut contact for free services through the school system, moving objects (even for aqualify short time) look where another is looking even if they do not attend a CMS school. • Responds to “no” and simple directions • Does not wave bye-bye (e.g. “Come here”) and says one or two words

Behavior/Interests

• Join to sound/rhythm by making or repeating sounds

• Attending to unusual objects or patterns

• Explores different toys and/objects with fingers and mouth

• Over- or under-reactions to stimulation

• Show physical reaction when excited

• Repeats a movement or routine over and over

Autism Spectrum Disorder Early Intervention 6

Autism is a neurodevelopmental disorder defined by persistent in social A statewide interagency system that provides services designeddeficits to intervene at communication and the early stages of ansocial infantinteraction, or toddler’saccompanied disability. by restricted, repetitive patterns of behavior, interests, or activities.

Print Autism Resource Guide 12-14-20.indd 12

12/14/20 10:56 AM

It may be upseting or scary to discover a delay in development.

Questions About Getting Deep breath... you can do this. a Diagnosis By now you have determined that your child has a delay, and maybe you or your team have concerns about ASD. The next step is getting an actual diagnosis. Remember, your child is still the same little one that you loved before you started this journey... nothing has changed. Receiving a diagnosis allows you to work toward getting the help your child needs; it is a way to obtain more knowledge and support.

What are the differences between a screening, an eligibility assessment and a formal diagnosis? Screenings usually occur in a doctor’s office and are the first step. They provide a quick and simple way to monitor a child’s healthy development. Monitoring includes clinical observations and the charting of developmental milestones. If concerns about your child are raised by a developmental screening, further screenings for hearing loss or lead poisoning, or the M-CHAT (a screening for ASD) may be completed. If screening results suggest that your child has signs of ASD, the next steps are to seek services and/or a diagnosis. Red Flags for Autism 12- 24 MONTHS Typical Development Spectrum Disorder (ASD) Eligibility assessments are conducted by the CDSA and CMS for the purpose of establishing eligibility for specialized servicesplay andbyare based on federal legislation, The Individuals with • Pretend using gestures, • Lack of imitation Social Interaction words and new actions Disabilities Education Improvement Act (IDEIA). Part C of the•IDEIA targets and toddlers, Poor emotionalinfants modulation • Stays active and engaged and Part B targets school-aged children (which during may include 3- and 4-year old children). CMS’s activities and monitors what you are evaluation team will consider whether your child’s symptoms adversely affects their educational paying attention to performance and whether specialized educational services are appropriate. A child may be • Talks with you about a topic he/she eligible for services through the CDSA or CMS is interested in, tells aboutwithout his/her having a diagnosis of autism. feelings and asks questions • Can short reciprocal Formal diagnoses of ASD arehave most often made through assessments conducted in the private and forth)or physician using specific criteria. While CDSA sector by a psychologist,conversation psychiatrist,(back neurologist does have staff qualified to make a diagnosis, the public school system cannot make a formal • Combines sounds, gestures and • Rarely/never points Communication diagnosis of ASD. words to tell what he/she is thinking • Absent or unusual use of gestures, • Starts to imitate new simple words expression, or vocal quality to & actions communicate • Uses words to name objects, pictures, • Delayed speech people, animals and starts to combine • Early signs of developmental regression There are some good reasons for getting a diagnosis. two words to convey different A thorough and detailed diagnosis... meanings • will provide important informationsimple and answers • Understands pronounsto your questions about your child’s behavior and development. (me, you, my)

Why would I seek a diagnosis for my child?

• will create a road map for treatment byrhythm identifying your child’s specific strengths and • Join to sound and plays by • Play routines are limited to a single Behavior/Interests making or repeating sounds action are imitations challenges and providing useful information about which needs andorskills should bealways completed in the same way Explores different toys and/objects targeted for effective•intervention. with fingers and mouth (getting ready

for picking a favoriteof toy while services. • may be required for insurance coverage certain

• Does not demonstrate joint attention

playing with others too) • Show physical reaction when excited

It can be frightening to think about “labeling” your child, but remember that a label does not limit. It does not determine outcomes. It does not change who your child is. However, a label can help • Has a regular sleep schedule Other your child receive services and accommodations that are appropriate for the unique pattern of • Eats an increasing variety of foods their development.

7 13

Print Autism Resource Guide 12-14-20.indd 13

12/14/20 10:56 AM

How Do I Get a Diagnosis For My Child in Mecklenburg County? As discussed on page 13, your primary pediatrician will conduct a screening with your child. If your child shows signs that warrant further evaluation, there are several options to explore. Your family may be referred to a developmental pediatrician, who is trained in diagnostics and management of developmental and behavioral issues in children and adolescents. Other options include:

FOR CHILDREN BIRTH TO THREE YEARS

FOR CHILDREN THREE+ YEARS

CDSA (see page 12) offers subsequent

A formal diagnosis is available (for a fee) from a developmental pediatrician, TEACCH (see page 23) or by professionals experienced in administering evaluations such as the Autism Diagnostic Observation Schedule (ADOS) or the Autism Diagnostic Interview (ADI).

evaluations beyond basic eligibility to address questions specific to autism and to provide you with information, a diagnosis (if appropriate) and options for services to support your familyâ&#x20AC;&#x2122;s individualized plan. Your service coordinator will aid in scheduling this with the staff psychologists.

Does my child need a diagnosis to receive intervention? In Mecklenburg County, it is not necessary to have a formal diagnosis in order to receive early intervention through the CDSA or specialized educational services through CMS. Please refer back to page 12 for further details. However, a medical diagnosis of autism is required to access Medicaid funded interventions under Early Periodic Screening Diagnosis and Treatment (EPSDT). This includes receiving Applied Behavioral Analysis (ABA) therapy (see page 17). Access to other intervention services and therapies will depend on the funding sourceâ&#x20AC;&#x2122;s requirements for a formal diagnosis.

FACT A child may be very social and able to look at your face or eyes and still have autism.

Print Autism Resource Guide 12-14-20.indd 14

12/14/20 10:56 AM

Part Two:

After Receiving A Diagnosis of ASD

Print Autism Resource Guide 12-14-20.indd 15

12/14/20 10:56 AM

Appropriately? In the tables below, developmental milestones are listed for children with typical development, alongside behaviors that may be signs of autism spectrum disorders (ASD). Learning developmental milestones can help parents know what to expect from their children.

Intervention Options For Your Child While looking at observable behaviors, please keep in mind that development is individual and

these are the approximate age ranges to observe behaviors for all Early intervention and special education servicesthe areexpected critical for addressing thechildren. needs ofEvery a child child is different, even among siblings. Your environment, experiences contribute on the autism spectrum. In addition, manychild’s children with ASD family benefitand from the therapies listed to development. If you are concerned, please talk to yourEvidence-Based child’s pediatrician soon as in their this section. Therapeutic services fall into two categories: andas Anecdotal. possible. The earlier concerns are addressed, the better the long-term prognosis is for the child, whether the delay is indeed autism or something else.

Evidence-Based Therapies An evidence-based practice (EBP) “is an instructional/intervention procedure or set of procedures for which researchers have provided an acceptable level of research that shows the practice produces positive outcomes for children, youth, and/or adults with ASD” (NPDC, 2019). As of this printing, there are 28 EBPs that may be used individually or in conjunction with each FlagsEBPs. for Autism other in12 working with children with ASD. This is a list of the most Red common UNDER MONTHS Typical Development Spectrum Disorder (ASD) Social Interaction

• Babbling or coos and smiles in

Speech-Languageresponse Therapy (ST)

• Tends not to turn to someone

Occupational Therapy (OT) calling their name and seems not to hear or be interested; seems to

One of the main challenges of ASD is and a delay The American Occupational Therapy • Turns head pays attention hear environmental sounds better towards sounds and voices or where in communication skills. Speech-language Association estimates that 80 percent of than human voices you are looking and pointing therapy will target any problem areas, teach children with ASD have sensory processing • Fails to look where someone is Shows interest to in faces missing skills, and provide•opportunities problems, which can interfere with their pointing practice and generalize recently acquired daily life. Occupational therapists use their • Absent facial expression, such as abilities. A speech-language pathologist will expertise to identify sensory and decreased smilingissues or upset/scared evaluate your child’s communication profile provide interventions to improve selfface and identify problem areas. It is important to regulation (wake-sleep cycles, level of • Crieswords differently for different needs • Delayed andsensory infrequent sounds know if your child understands as well alertness, self-quieting), processing, Communication of speech (e.g. hungry vs. tired) as they say them and whether your child’s motor development and adaptive behavior. • Makes eye contact • Limited eye contact and may not problems are associated with differences in and maintains for moving objects (even for a short time) look where another is looking his desire to communicate, deficits in language In addition to providing interventions that • Responds to “no” and simple directions • not integration wave bye-byeissues abilities, or with the demands of conversation. help improve Does sensory (e.g. “Come here”) and says one or influencing behaviors in the home, occupational two words therapy practitioners also make suggestions for changes the classroom environment • Join to sound/rhythm by making or •toAttending to unusual objects or in Behavior/Interests repeating sounds order to assistpatterns children with participating and progressing•atOverschool, playing, making • Explores different toys and/objects or under-reactions tofriends with fingers and mouth stimulation and focusing in order to learn. Fine motor skills also addressed byaOTs. • Show physical reaction whenare excited • Repeats movement or routine over and over

Autism Spectrum Sensory ProcessingDisorder Problems 6

Autism is a neurodevelopmental disorder bynervous persistent deficits in social A neurophysiological condition where the defined brain and system have communication and interaction, accompanied by restricted, repetitive trouble processing orsocial integrating stimulus. patterns of behavior, interests, or activities.

Fine Motor Skills Referring to the coordination between small muscles, like those of the hands and fingers.

Print Autism Resource Guide 12-14-20.indd 16

12/14/20 10:56 AM

Deep breath... you can do this.

Physical Therapy (PT)

Applied Behavior Analysis (ABA) Therapy

Physical therapists are trained to work with people to build or rebuild strength, Applied Behavior Analysis focuses on and increase mobility in the large muscle principles of learning that include the idea groups in the body. Physical therapists may for Autism that peopleRed are Flags more likely to repeat 12- 24 MONTHS Typical Development work with very young children on basic Spectrum Disorder (ASD) behaviors that are rewarded than behaviors motor skills such as sitting, rolling, standing that are not recognized or are ignored. ABA Pretend by using gestures, • Lack of imitation and playing. They may •also workplay with Social Interaction can help children with autism by teaching wordstechniques and new actions • Poor emotional modulation parents to teach them some for them to develop a number of skill sets at • Stays active and engaged during helping their child build muscle strength, the same time as it works to reduce the activities and monitors what you are coordination and skills. paying attention to likelihood of their engaging in problematic • Talks with you about a topic he/she behaviors. interested in, tells about his/her Children with ASD may is have low muscle feelings asks questions tone, or have a tough time with and coordination Treatment begins with an assessment to • Can have short and sports. These issues can interferereciprocal with conversation (back and forth) determine the child’s existing skills and the basic day-to-day functioning and are almost development of an individualized program certain to interfere with social and physical • Combines sounds, gestures andto increase • Rarely/never points skills. A trained therapist works Communication wordsautism to tell what he/she is thinking development. Children with would • Absent unusual usevary, of gestures, one-on-one with aor child (hours but • Starts to imitate new simple words expression, or vocal quality to rarely be termed physically disabled but many receive 20 to 40 hours a week) or in & actions communicate may have physical limitations. conjunction with other therapists (such as

• Uses words to name objects, pictures, • Delayed speech speech or•occupational therapists) for a people, animals and starts to combine Early signs of developmental regression two words to convey different “modified” approach for 10 to 15 hours meanings a week. • Understands simple pronouns (me, you, my)

Behavior/Interests

Other

• Has a regular sleep schedule • Eats an increasing variety of foods

• Play routines are limited to a single action or are imitations always completed in the same way • Does not demonstrate joint attention

Print Autism Resource Guide 12-14-20.indd 17

12/14/20 10:56 AM

Anecdotal Therapy Anecdotal interventions provide families additional methods that, while not scientifically proven, have had some positive outcomes. Many anecdotal therapies are not covered by insurance, however grants may be available to subsidize the cost. Before using any anecdotal therapy, please consult your physician for guidance.

Music Therapy

Equine Therapy

Many families have found the fun of music therapy to support communication, social and behavioral goals. Music therapy is a well-established professional health discipline that uses music as a therapeutic stimulus to achieve non-musical treatment goals.

Equine therapy is an alternative multimodal intervention that utilizes a horse to enhance core impairments in ASD. Information suggests that equine therapy has beneficial effects on behavioral skills and to some extent on social communication in ASD.

Research supports connections between speech and singing, rhythm and motor behavior, and memory for song and academic material. Preferred music can improve mood, attention, and behavior in order to optimize the studentâ&#x20AC;&#x2122;s ability to learn and interact.

Biomedical Interventions Biomedical interventions focus on the physical needs of the person by addressing deficits or system weaknesses in the body (digestive, respiratory, muscular, etc.) through medical or chemical means. Examples of biomedical interventions include the gluten-casein-free diets (GFCF), addressing food sensitivities, use of supplements, gut treatments and immune system regulation.

FACT Although people with autism grow and change, they never â&#x20AC;&#x153;outgrowâ&#x20AC;? their autism.

Print Autism Resource Guide 12-14-20.indd 18

12/14/20 10:56 AM

Is My Child Developing Appropriately? In the tables below, developmental milestones are listed for children with typical development, Other Health Related Concerns alongside behaviors that may be signs of autism spectrum disorders (ASD). Learning While the following differences defining characteristics of autism, many children may developmental milestones canare helpnot parents know what to expect from their children. experience these other challenges at some point throughout their lives. These co-morbid While looking at observable behaviors, pleaseto keep in the mind thattodevelopment individual conditions typically need to also be addressed, allow child regulate andislearn more and these are the approximate age ranges to observe the expected behaviors for all children. Every effectively. child is different, even among siblings. Your child’s environment, family and experiences contribute to their development. If the youmost are concerned, please talkpresent to yourinchild’s as ASD, soon as This list includes some of common conditions youngpediatrician children with possible. The earlier concerns are addressed, the better the long-term prognosis is for the child, however additional conditions may develop as a child gets older. It is important to have regular whether the delay is indeed autism or something else. visits with your doctor and intervention team to discuss any changes in your child as they happen. Please talk to your pediatrician if your child is having any of these difficulties.

Disrupted Sleep Sleep difficulties typically fall into two general categories: difficulty falling asleep and difficulty staying asleep. Children may exhibit signs of one or both categories. Lack of sleep can intensify other issues that a child is already experiencing. UNDER 12 MONTHS Typical Development

Gastrointestinal Issues

Attention Deficit Hyperactivity Disorder (ADHD) ADHD typically is known as an inability or difficulty in focusing. While it can be difficult to separate focus issues from other Red Flags forhave Autism signs of ASD, some children this Spectrum Disorder (ASD) additional challenge.

• Babbling or coos and smiles in • Tends not to turn to someone Social Interaction Many children experience some type of Developmental response calling theirCoordination name and seems not bowel distress off and on through their to hear or be interested; seems to Delay • Turns head and pays attention hear environmental sounds better lifetime. Most commonly, children may have towards sounds and voices or where In addition to other delays,voices some children than human constipation or diarrhea. In some children, you are looking and pointing experience a delay ofis • Failsin tothe lookdevelopment where someone the experience of pain may•result in feeding Shows interest in faces motor skills. These can include but are not pointing difficulties, which may have a sensory limited to delays in walking or showing an as • Absent facial expression, such component as well. unusual posture or walking pattern, lowered decreased smiling or upset/scared muscle tone orface balance issues. Smaller muscle groups may also be impacted, effecting • Cries differently for different needs • Delayed and infrequent sounds Communication hand-eye coordination and handwriting. of speech (e.g. hungry vs. tired)

Behavior/Interests

• Makes eye contact and maintains for moving objects (even for a short time)

• Limited eye contact and may not look where another is looking

• Responds to “no” and simple directions (e.g. “Come here”) and says one or two words

• Does not wave bye-bye

• Join to sound/rhythm by making or repeating sounds

• Attending to unusual objects or patterns

• Explores different toys and/objects with fingers and mouth

• Over- or under-reactions to stimulation

• Show physical reaction when excited

• Repeats a movement or routine over and over

Autism Spectrum Disorder Co-morbid 6

Autism is aofneurodevelopmental disorder defined by persistent deficits Presence one or more additional conditions co-occurring with the in social communication primary one. and social interaction, accompanied by restricted, repetitive patterns of behavior, interests, or activities.

Print Autism Resource Guide 12-14-20.indd 19

12/14/20 10:56 AM

Taking Care of You If you are reading this booklet, you may have a child with a delay; you may even have a child with autism. This time is turbulent while you are figuring out what is going on and what to do next. But thinking back to the safety speech when you are on an airplane… you must secure your own oxygen mask before assisting others. Taking care of yourself, the caregiver, is crucial. You are about to embark on a journey that may take you in new directions and making sure that you set a solid foundation for yourself is key. No one feels fully prepared for all the things that parenting is going to require. Even though you know that there will be sleepless nights, thousands of decisions, worrying and more, these may be increased when you have a child that needs extra support.

It is OK to Not Be OK Wrapping your head around what is going on is a process, and it is unlikely that you will instantly accept this information. Some families experience a wave of guilt as they think they caused their child’s challenges. This process may even mimic the stages of grief, as described by Dr. Elizabeth Kubler-Ross: Denial, Anger, Bargaining, Depression, Acceptance. No one can tell you how you should feel, or how quickly you should process information or make decisions. Take the time to honor your feelings. It is OK to not be OK right now!! Just remember:

You CAN do this... take it one thing at a time... just keep going! As your journey continues, you will become more confident in yourself and your ability to parent your child. Part of gaining that confidence is taking care of yourself and keeping your mind, body, and soul nourished.

What is Self-Care? The dictionary defines self-care as the practice of taking an active role in protecting one’s health, well-being and happiness, in particular during periods of stress. Self-care comes in many forms; it is about making yourself feel happier and calmer. Self-care does not have to cost a lot of money, and may be as simple as taking a daily walk or enjoying a favorite movie. At it’s root, it is making sure that you maintain a balance between taking care of your physical and mental health that allows you to function at your best.

FACT Those with autism are able to build relationships.

Print Autism Resource Guide 12-14-20.indd 20

12/14/20 10:56 AM

Care of the Mind You are not alone in this journey. Your brain is an amazing organ, capable of processing millions of ideas. But like a computer with too many tabs open, it too will slow down when you are overwhelmed. Your mental health is just as important as your physical health. Reaching out for help and support is a sign of strength; no one gets through life without the support of others. Families may distance themselves from others while they are focused on the needs of their child, leading to increased anxiety or depression. Contacting someone who can help you process information and lend a kind, supportive ear can alleviate stress and help you organize all the thoughts you are having. Talking with other parents who have walked this path or participating in parent support groups offer a connection to others who have experienced or are currently experiencing similar circumstances. Some parents look to a trained counselor for an objective viewpoint and coping tools.

Care of the Body Setting the example of a healthy body shows your family that you value yourself. Remembering to eat, sleep, and recharge our own battery is part of self-care. Beyond this, keeping up with doctor and dentist visits for yourself, exercising, and allowing your body to have “down time” keeps you in the best health possible. It is easy to push these needs aside when you are pressed for time or money. Physical symptoms such as headache, stomach distress, sleep problems or muscular pain may be signs that you have not been taking good enough care of yourself. Your child needs you to be at your best, so don’t ignore yourself completely.

Care of the Soul You are an equal member of your family and prioritizing yourself is not selfish; it is the glue that keeps your family together. What nourishes you in your core? How do you find peace from within? For some people it may be a religious or spiritual connection. For others it may be helping your community. Possibly meditation or quiet time, or maybe 5-minutes of reading or dancing helps center and ground you. Finding an inner calm is something we do for ourselves, yet the feelings that are invoked from this type of care can do as much for us as any other self-care act. Parents are busy, but we all have a few minutes a day to take care of our soul. Please see community resources on page 23 for more specific information on family support. 21

Print Autism Resource Guide 12-14-20.indd 21

12/14/20 10:56 AM

Local Agency Referral Information Developmental Pediatricians

Non-Profit Programs

Atrium Developmental/Behavioral Pediatrics 704-403-2626

Guiding Parents to Services (GPS) GPS@smartstartofmeck.org 704-943-9416 This program is dedicated to helping you start your journey. GPS is a free program offered by Smart Start of Mecklenburg County designed to help parents with children birth to five begin the process of understanding autism spectrum disorders and get help for themselves and their child. The GPS Coordinator provides emotional support as well as helps you understand the process for finding appropriate services. Educational workshops and parent support groups are offered, allowing parents a way to connect to other parents while gaining knowledge. GPS is a place where you can regain your balance, expand your capabilities, and be in a better position to support your child.

Novant Health Developmental/Behavioral Pediatrics 704-384-0567 Developmental pediatricians are experts on child development. In addition to conducting evaluations, they are more experienced with the needs of a child with delays, including behavioral health. Both practices offer 2 locations and accept Medicaid and Private Insurance for evaluations. A referral from your primary pediatrician is required.

FACT Children with autism can be emotional and affectionate.

Autism Society of North Carolina (ASNC) 704-894-9678 Among the services provided by ASNC, Autism Resource Specialists are available from the moment a family hears the diagnosis, with a focus on school age through adulthood. Autism Resource Specialists are often the first people parents talk to after their child is diagnosed. They help families connect with resources, keep their children safe, find services, and resolve school issues. They also provide guidance on lifelong issues including employment, residential options, and planning for childrenâ&#x20AC;&#x2122;s needs beyond parentsâ&#x20AC;&#x2122; lives. Since Autism Resource Specialists are all parents of children with autism themselves, they can provide the support of an experienced parent because of their first-hand knowledge of what it is like to hear the word autism and raise a child with autism. Care Management for At-Risk Children (CMARC) 980-314-9340 CMARC is a care management program for young children ages birth to five that provides care coordination and support for children and families. One of their target populations are Children with Special Health Care Needs (CSHCN) who need physical, developmental, behavioral and/or emotional support, including autism. They recognize the parent/caregiver as the expert on the child and want to support them in being their childâ&#x20AC;&#x2122;s best advocate. Services are provided free of charge.

Print Autism Resource Guide 12-14-20.indd 22

12/14/20 10:56 AM

Please note that this is not an exhaustive list of resources in Mecklenburg County. However, service providers at each agency can help families connect to additional services as appropriate.

For Parents and Caregivers Charlotte Speech and Hearing Center (CSHC) 704-523-8027 (ext. 225) CSHC is a non-profit organization offering speech-language services beginning at infancy and stretching throughout the lifespan of the individual. Complete community referral services including speech-language evaluations and follow-up therapy are available. Families can self-refer for services; CSHC accepts many insurances, including Medicaid, but also has an assistance fund for individuals who are uninsured/underinsured (must meet eligibility requirements). Exceptional Childrenâ&#x20AC;&#x2122;s Assistance Center (ECAC) 800-962-6817 ECAC will provide support and information regarding your childâ&#x20AC;&#x2122;s access to an appropriate education or to available services. ECAC offers resources, workshops, and materials created to teach parents how to advocate for their child with a disability in order to access services and attain an effective individualized education program (IEP). Services are provided at no cost to North Carolina residents and helps parents with children birth to 26. TEACCH Charlotte 919-445-2365 The University of North Carolina (UNC) TEACCH Autism Program (Charlotte Center) is part of a regional university-based system of community centers offering a set of core services along with demonstration programs meeting the clinical, training and research needs of individuals with ASD, their families and professionals across the state of NC. A history form asking for information about your child can either be mailed to you or you can access the form online. When it is completed and returned, an initial consultation meeting at TEACCH will be scheduled. Children older than three are eligible to receive diagnostic evaluations (if they have not yet received an ASD diagnosis from another provider).

Parents and caregivers need to take care of themselves. Reaching out to friends and family, religious organizations, and other organizations that you are involved in, help expand your support network. In person or internet parent support groups and other organizations that focus on family support are excellent resources to meet other families. Parents are an incredible resource of knowledge, support, and understand what you are going through. Medical centers and mental health providers offer another level of support. Please check with your insurance company regarding coverage for these types of services. Behavior Health Center (BHC) - Atrium Health 704-358-2700 BHC offers a comprehensive, integrated system of inpatient, outpatient, school-based, crisis and residential treatment programs for adults, teenagers and children. Crossroads Counseling Center 828-327-6633 Crossroads offers access to clinicians specially trained to provide services to people of all ages â&#x20AC;&#x201C; from early childhood through adolescence and adulthood. We work with people to help identify their strengths and resolve difficulties they are struggling with, including Autism Spectrum and Early Childhood Issues. HopeWay 1-844-HOPEWAY HopeWay is an accredited non-profit mental health treatment center that provides best practice mental health care and education for adults and their families. Mecklenburg County Public Health Dept. 704-336-4700 Wellness, testing, and education programs to improve your health and that of our community. Novant Health Michael Jordan Family Medical Clinic 980-302-9405 This clinic provides medical and mental health care for low-cost or no cost to patients of all ages.

Print Autism Resource Guide 12-14-20.indd 23

12/14/20 10:56 AM

Useful Websites These websites offer a wealth of information; while it can be overwhelming to look at these sites, taking the time to learn more about ASD will better prepare you for what is ahead. For direct links, please visit our website www. smartstartofmeck.org/gps.

Local Sites Smart Start of Mecklenburg County: www.smartstartofmeck.org Autism Society of NC: www.autismsociety-nc.org CDSA: www.beearly.nc.gov CMS: www.cms.k12.nc.us Exceptional Childrenâ&#x20AC;&#x2122;s Assistance Center: www.ecac/parentcenter.org TEACCH: www.teacch.com

National Sites Autism Navigator: www.autismnavigator.com/resources-and-tools Autism Society: www.autism-society.org Autism Speaks: www.autismspeaks.org Center for Disease Control (CDC): www.cdc.gov/actearly; www.cdc.gov/ncbddd/autism First Signs: www.firstsigns.org The National Information Center for Children and Youth with Disabilities: www.nichcy.org National Institute of Child Health and Human Development, Autism Site: www.nichd.nih.gov Positive Beginnings: Supporting Young Children with Challenging Behavior: pbs.fsu.edu/PBS.html

Spanish Resources (Recursos de autism) Autismo Diario: www.autismodiario.org Autism Society: www.autism-society.org/enespanol/ Zero to Three: National Center for Infants, Toddlers and Families: www.zerotothree.org

Print Autism Resource Guide 12-14-20.indd 24

12/14/20 10:56 AM

References 16 Early Signs of Autism. (n.d.). Retrieved July 21, 2020, from https://autismnavigator.com/ Barbaro, J., & Dissanayake, C. (2009). Autism spectrum disorders in infancy and toddlerhood: a review of the evidence on early signs, early identification tools, and early diagnosis. Journal of Developmental & Behavioral Pediatrics, 30(5), 447-459. Centers for Disease Control and Prevention. (2013). Learn the signs. Act early. Program (www. cdc. gov/ActEarly). Cox Media Group. “Mecklenburg County Mental Health Resources.” WSOC, 6 Jan. 2020, www.wsoctv.com/station/mecklenburg-county-mental-health-resources/951073407. Developmental Delays - Developmental Disabilities - Autism - Screening - Diagnosis - Early Intervention First Signs. (n.d.). Retrieved July 21, 2020, from http://firstsigns.org/ Evidence-Based Practices. (n.d.). Retrieved from https://autismpdc.fpg.unc.edu/ Johnson, C. P. (2008). Recognition of Autism Before Age 2 Years. Pediatrics in Review, 29(3), 86-96. doi:10.1542/pir.29-3-86 McIntyre, PhD, Laura Lee. “Promoting Well-Being in Families with Children with Intellectual and Developmental Disabilities.” American Psychological Association, Sept. 2016, www.apa.org/pi/disability/resources/publications/newsletter/2016/09/family-developmental disabilities. Muratori, F., & Maestro, S. (2018). Early signs of autism in the first year of life. Signs of Autism in Infants, 46-62. doi:10.4324/9780429480249-3 Ozonoff, S., Iosif, A., Baguio, F., Cook, I. C., Hill, M. M., Hutman, T.. Young, G. S. (2010). A Prospective Study of the Emergence of Early Behavioral Signs of Autism. Journal of the American Academy of Child & Adolescent Psychiatry, 49(3). doi:10.1016/j.jaac.2009.11.009 Peacock, G. (2009). Learning the Signs of Autism. Autism Advocate. Srinivasan, S. M., Cavagnino, D. T., & Bhat, A. N. (2018). Effects of Equine Therapy on Individuals with Autism Spectrum Disorder: A Systematic Review. Review Journal of Autism and Developmental Disorders, 5(2), 156-175. doi:10.1007/s40489-018-0130-z Stone, W. L., & DiGeronimo, T. F. (2006). Does my child have autism?: A parent’s guide to early detection and intervention in autism spectrum disorders. San Francisco, CA: Jossey-Bass. Warren, Z. (2008, October). Early assessment and diagnosis of autism spectrum disorders. Lecture presented at First International Autism Summit in OH, Cleveland.

Print Autism Resource Guide 12-14-20.indd 25

12/14/20 10:56 AM

Notes

Print Autism Resource Guide 12-14-20.indd 26

12/14/20 10:56 AM

The Charlotte-Mecklenburg area Autism Spectrum Disorder Collaborative In an effort to raise awareness of autism spectrum disorder (ASD) and the importance of acting early, the Charlotte-Mecklenburg area Autism Spectrum Disorder Collaborative was created. This group of local organizations has worked together to educate, inform, support, and encourage everyone affected by autism. These organizations have provided targeted outreach to healthcare and child care professionals on the value of early intervention. Through trainings, workshops, and educational materials, the professional community has embraced this idea and continues to assist families in getting the support they need. The Collaborative also extended its work to educate families and better prepare them for the journey ahead. Autism-related books were provided to the Spangler Library, located at ImaginOn, to help families understand autism and assist them in learning more about becoming an advocate for both their child’s and their family’s needs. This resource guide was developed to help explain the signs of autism and how to get further assistance in Mecklenburg County. Information contained in this guidebook is accurate as of this printing, however programs are ever-evolving. Some terms may be new to you; please see footnotes for the definition of bolded terms. This book has been made possible through the hard work and dedication of the following agencies:

Autism Charlotte Autism Society of North Carolina Bethlehem Center Care Management for At-Risk Children Charlotte-Mecklenburg Schools Charlotte Speech and Hearing Children’s Developmental Services Agency – Mecklenburg County Easterseals UCP Smart Start of Mecklenburg County – Guiding Parents to Services Trusted Parents U. of North Carolina – TEACCH U. of North Carolina – Greensboro

Print Autism Resource Guide 12-14-20.indd 27

12/14/20 10:56 AM

E S

Guiding Parents to Services In 1993, North Carolina Governor Jim Hunt signed legislation creating Smart Start, a public-private initiative that funds local non-profit organizations that “ensure that young children enter school healthy and ready to succeed” (NCPC, 2008). Today, 75 partnerships representing all 100 NC counties support this mission. Guiding Parents to Services (GPS) began in 2012 as a result of an autism needs assessment conducted in 2010. Research of the Charlotte-Mecklenberg area showed that while families had a difficult time finding resources, even among professionals there was a disconnect. Having a way for professionals, social service agencies, and families to connect to each other for the greater good was critical. Early work from GPS included working with medical staff to encourage early screening and intervention, leading to earlier diagnosis, along with providing families quality resources and support. Today, GPS remains a primary resource for families who are new to the world of autism, giving them a healthy start on their new journey with their child.

Print Autism Resource Guide 12-14-20.indd 28

12/14/20 10:56 AM