Autism Family Resource Guidebook

smartstartofmeck

Guiding Parents to Services (GPS), is pleased to share the new Autism Family Resource Guide. GPS is a funded program of Smart Start of Mecklenburg County. This publication serves as a guide for parents with children ages birth to five as they navigate the world of autism. For more information regarding the publication or the program, please reach out to the Autism Coordinator of Guiding Parents to Services at gps@smartstartofmeck.org.

Autism Family Resource Guidebook for Mecklenburg County, North Carolina. ©2021

Family Resource Guide


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

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Guiding Parents Parents to to Services

Guiding Parents to Services


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.

Administered by:

of Mecklenburg County

© Copyright 2021 Smart Start of Mecklenburg County


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,

whether the delay

Autism

is indeed

is a journey,

autism or

and

something

no journey

else.

is completed all at once. This

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

future (and yours) will be. It is important to know Red where Flags to turn for Autism

UNDER 12 MONTHS Typical Development

and how to take action. This section will help you Spectrum with that. Disorder (ASD)

Social Interaction • Babbling or coos and smiles in

• Tends not to turn to someone

Part Two, response families who have received a diagnosis calling of autism 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

strategies and hear environmental sounds better

towards resources sounds that and voices are targeted or where to autism. Autism is a

than human voices

pervasive disorder you are looking and recognizing and pointing the signs and ACTING on it is

• Fails to look where someone is

the first step • Shows towards interest advocating faces for your child. While this guide

pointing

does not list every available resource, it provides a good basic

• Absent facial expression, such as

overview for families in Mecklenburg county. Working decreased with smiling or upset/scared

programs, such as Guiding Parents to Services, will face help connect

you with the additional information that you need to serve the

Communication

• Cries differently for different needs • Delayed and infrequent sounds

needs of your

(e.g.

unique

hungry

and

vs. tired)

precious child.

of speech

• Makes eye contact and maintains for

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

• Responds to “no” and simple directions

(e.g. “Come here”) and says one or

two words

• Limited eye contact and may not

look where another is looking

• Does not wave bye-bye

Behavior/Interests

• Join to sound/rhythm by making or

repeating sounds

• Explores different toys and/objects

with fingers and mouth

• Show physical reaction when excited

• Attending to unusual objects or

patterns

• Over- or under-reactions to

stimulation

• Repeats a movement or routine

over and over

6

4

Autism Pervasive Spectrum Disorder

Autism Appearing is a in neurodevelopmental early childhood and disorder remaining defined for the by length persistent of an deficits individual’s social life.

communication and social interaction, accompanied by restricted, repetitive

patterns Advocate of behavior, interests, or activities.

A person who pleads another’s cause, or who speaks or writes in support

of something.


Part One:

Does My Child Have A Delay?

5


Is My Child Developing

Is Appropriately?

My Child Developing

Appropriately?

In the tables below, developmental milestones are listed for children with typical development,

In alongside the tables behaviors below, developmental that may be signs milestones of autism are spectrum listed for disorders children (ASD). with Learning typical development,

alongside developmental behaviors milestones that may can be help signs parents of autism know spectrum what to disorders expect from (ASD). their Learning children.

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

While these are looking the approximate at observable age behaviors, ranges to please observe keep the in expected mind that behaviors development for all is children. individual Every and

these child is are different, the approximate even among age siblings. ranges Your to observe child’s environment, the expected behaviors family and for experiences all children. contribute Every

child to their is different, development. even among If you are siblings. concerned, Your child’s please environment, talk to your family child’s and pediatrician experiences as soon contribute as

to possible. their development. The earlier concerns If you are are concerned, addressed, please the better talk to the your long-term child’s pediatrician prognosis is as for soon the as child,

possible. whether the The delay earlier is concerns indeed autism are addressed, or something the better else. the long-term prognosis is for the child,

whether the delay is indeed autism or something else.

Red Flags for Autism

UNDER 12 MONTHS Typical Development

UNDER 12 MONTHS Typical Development Spectrum Red Disorder Flags for (ASD)

Social Interaction

Communication

Communication

Behavior/Interests

Behavior/Interests

• Babbling or or coos and smiles in in

response


Turns

Turns

head

head

and

and

pays

pays

attention

attention

towards

towards

sounds

sounds

and

and

voices

voices

or

or

where

where

you

you

are

are

looking

looking

and

and

pointing

pointing

• Shows interest in faces

Shows interest in faces

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

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

moving objects (even for a short time)

• Responds to “no” and simple directions

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

two words “Come here”) and says one or

two words


Joins

Join to

in with

sound/rhythm

sound and

by

rhythm

making

activities

or

by

repeating

making

sounds

or repeating sounds

Explores different toys and/objects

• Explores different toys and/objects

with fingers and mouth

with fingers and mouth

Shows physical reaction when excited

• Show physical reaction when excited

• Tends not to turn to someone

calling their name and seems not

to hear or be interested; seems to

hear environmental sounds better

than human voices

• Fails to look where someone is

pointing

• Absent facial expression, such as

decreased smiling or upset/scared face

face

Delayed and infrequent sounds of

• Delayed and infrequent sounds

speech

of speech

• Limited eye contact and may not look

• where Limited another eye contact is looking and may not

look where another is looking

• Does not wave bye-bye

• Does not wave bye-bye


Attends

Attending

to

to

unusual

unusual

objects

objects

or

or

patterns

patterns

Over- or under-reactions to

• Over- or under-reactions to

stimulation

stimulation

Repeats movement or routine


over

Repeats

and

a

over

movement or routine

over and over

6

Autism Spectrum Disorder

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.

6


12-24 MONTHS Typical Development Red Flags for ASD

Social Interaction

• Pretends to 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 they

are interested in, tells about their

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 they are 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

• Joins in with sound and rhythm activities

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)

• Shows 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

• May be unable to self-soothe or has

sleep disturbances

7


24-36 MONTHS Typical Development Red Flags for ASD

Social Interaction

• 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)

• Starts to have “own things”

(Understand the concept of

“mine” and “yours”)

• 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

Communication

• Knows names of familiar people

and body parts and can point to

pictures of them

• Says sentences with 3 to 5 words

and carries on a conversation using

2 to 3 sentences

• Understands words like “in,” “on,”

and “under”; plurals and pronouns

• Follow instructions with 2 or 3

steps

• Has little or no speech and sometimes

is not responsive to verbal cues

• Unusual rhythm of vocalization (such

as rate, intonation, pitch, stress and

inflection) or repeats sounds, words,

or phrases

• May not understand instructions and/

or may take longer to respond

• 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

• May show defiant behavior

• Enjoy working with 3-4 piece puzzles

• Can sort objects by shape and color

• Lack of sharing interest or enjoyment

• Strong restricted and persistent

interests

• Exhibits inappropriate attachments

to objects

• Repetitive or obsessive play

• 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.

8


3-4 YEARS Typical Development Red Flags for ASD

Social Interaction

• 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

• 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)

• 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”

• Difficulty forming sentences

• Repeats words and phrases

• Doesn’t answer questions

appropriately or follow directions

• Flat vocal tone or sing song voice

Behavior/Interests

• Enjoys doing new things, tries new

activities and attempts new challenges

• Talks about likes, interests, and

has favorites

• Expresses a sense of belonging to a

group

• Shows awareness that their actions

affect others

• 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

• 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

• Dresses and undresses themselves

with occasional assistance

• Irregular eating

• Irregular sleeping habits

• Unusual safety awareness

(Overly fearful to fearless Impulsivity)

9


5 YEARS Typical Development Red Flags for ASD

Social Interaction

• Wants to please and be like friends;

plays and interacts cooperatively

with other children (works on projects

together, exchange ideas)

• Forms positive relationships with new

teachers or caregivers over time and

seeks out trusted teachers and

caregivers as needed

• Explains reasons for their feelings that

may include thoughts and beliefs as

well as outside events

• Communicates understanding and

empathy for others’ feelings

• 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 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)

• 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)

• Difficulty forming sentences

• Repeats words and phrases

• Doesn’t answer questions

appropriately or follow directions

• Flat vocal tone or sing song voice

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)

• Shows awareness that their behavior

can affect the feelings of others

• More likely to follow social rules,

transitions, and routines that have

been explained

• 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

• Plays with toys the same way

every time

• Likes certain parts of objects

(often wheels or spinning parts)

• Has obsessive interests

Other

• Transitions independently from active

to quiet activities most of the time

• Usually is not physically active

10


Developmental Chart Terms

Emotional Modulation

A child’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 others’ 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.

11


Is My Child Developing

Appropriately?

What To Do If Your Child Shows

Signs Of A Delay

In the tables below, developmental milestones are listed for children with typical development,

alongside Parents and behaviors professionals that may sometimes be signs want of autism to “wait-and-see” spectrum disorders when (ASD). there Learning are concerns about a

developmental child’s development. milestones You may can not help want parents to label know your what child to and expect there from are their hopes children. that the child is a

late bloomer and will catch up. Waiting for a child to catch up, however, wastes valuable time,

While and we looking know that observable early intervention behaviors, is the please best keep way to in help mind your that child development learn those is individual skills they are and

these struggling are the with; approximate it is the best age hope ranges for the to observe future of the any expected child with behaviors ASD. Early for intervention all children. Every will

child provide is different, benefits even that among may not siblings. be gained Your if child’s a wait-and-see environment, approach family is and taken. experiences contribute

to their development. If you are concerned, please talk to your child’s pediatrician as soon as

possible. If your child The is earlier showing concerns any delay are in addressed, development, the better contact the the long-term following prognosis programs is for for further

child,

whether assessment; the delay parents is indeed may self-refer autism or with something no physician else. referral needed:

FOR CHILDREN BIRTH TO THREE YEARS

FOR CHILDREN THREE+ YEARS

Mecklenburg County

Children’s Developmental Services Agency

(CDSA)

Charlotte-Mecklenburg Schools (CMS)

Exceptional Children’s Program: 980-343-2720

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

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

Red Flags for Autism

UNDER 12 MONTHS Typical Development

Spectrum Disorder (ASD)

CDSA is part of the statewide North Carolina The Exceptional Children’s Program serves children

Infant-Toddler Program. CDSA provides services at least three years old who may be developmentally

Social Interaction • Babbling or coos and smiles in

• Tends not to turn to someone

to families with children birth to three years of delayed. An evaluation, provided at no cost, must be

response

calling their name and seems not

age who may have delays in development or have completed to determine eligibility and programing.

to hear or be interested; seems to

certain medical conditions. • Early Turns intervention

head and pays attention It is a good idea to begin the enrollment process

hear environmental sounds better

professionals work with caregivers towards to sounds build their and voices before where their third birthday when possible. For

than human voices

capacity to enhance their child’s you are development.

looking and pointing children enrolled with CDSA, your service coordinator

Evaluations and service coordination • Fails to look where someone is

• Shows interest

are provided

in faces

will help with the transition process.

at no charge to families. Other services are

pointing

provided on a sliding scale fee. Medicaid and

Bright Beginnings • Absent and NC facial Pre-K expression, programs serve such as

private insurance are billed with family permission. children who will be decreased four years smiling old on or or upset/scared

before

August 31. These programs face may include special

education students receiving various levels of

Communication

• Cries differently for different support. needs A separate • Delayed eligibility and evaluation infrequent is required. sounds

(e.g. hungry vs. tired)

of speech

CMS does not diagnose ASD, but your child may

• Makes eye contact and maintains qualify for for free services • Limited through eye contact the school and may system, not

moving objects (even for a

even

short

if

time)

they do not

look

attend

where

a CMS

another

school.

is looking

• 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

• Explores different toys and/objects

with fingers and mouth

• Show physical reaction when excited

• Attending to unusual objects or

patterns

• Over- or under-reactions to

stimulation

• Repeats a movement or routine

over and over

6

12

Autism Early Intervention

Spectrum Disorder

Autism A statewide is a neurodevelopmental interagency system that disorder provides defined services by persistent designed deficits to intervene social at

communication the early stages of and an social infant interaction, or toddler’s accompanied disability. by restricted, repetitive

patterns of behavior, interests, or activities.


Questions About Getting

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.

Eligibility assessments are conducted by the CDSA and CMS for the purpose of establishing

eligibility for specialized services and are based on federal legislation, The Individuals with

Disabilities Education Improvement Act (IDEIA). Part C of the IDEIA targets infants and toddlers,

and Part B targets school-aged children (which may include 3- and 4-year old children). CMS’s

evaluation team will consider whether your child’s symptoms adversely affects their educational

performance and whether specialized educational services are appropriate. A child may be

eligible for services through the CDSA or CMS without having a diagnosis of autism.

Formal diagnoses of ASD are most often made through assessments conducted in the private

sector by a psychologist, psychiatrist, neurologist or physician using specific criteria. While CDSA

does have staff qualified to make a diagnosis, the public school system cannot make a formal

diagnosis of ASD.

Why would I seek a diagnosis for my child?

There are some good reasons for getting a diagnosis. A thorough and detailed diagnosis...

• will provide important information and answers to your questions about your child’s

behavior and development.

• will create a road map for treatment by identifying your child’s specific strengths and

challenges and providing useful information about which needs and skills should be

targeted for effective intervention.

• may be required for insurance coverage of certain services.

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

your child receive services and accommodations that are appropriate for the unique pattern of

their development.

13


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

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 family’s

individualized plan. Your service coordinator will

aid in scheduling this with the staff psychologists.

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).

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 source’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.

14


Part Two:

After Receiving A Diagnosis Of ASD

15


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 Early intervention are the approximate and special age ranges education to observe services the are expected critical for behaviors addressing for all the children. needs of Every a child

child on the is different, autism spectrum. even among In addition, siblings. Your many child’s children environment, with ASD family benefit and from experiences the therapies contribute listed

to in their this section. development. Therapeutic If you are services concerned, fall into please two categories: talk to your Evidence-Based child’s pediatrician and as Anecdotal.

soon as

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 other in working with children with ASD. This is a list of the Red most Flags

UNDER 12 MONTHS Typical Development

common for Autism EBPs.

Spectrum Disorder (ASD)

Social Interaction • Babbling or coos and smiles in

• Tends not to turn to someone

Speech-Language response Therapy (ST) Occupational calling their Therapy name and seems (OT) not

to hear or be interested; seems to

One of the main challenges • Turns of ASD head is and a delay pays attention The American Occupational Therapy

hear environmental sounds better

in communication skills. Speech-language

towards sounds and voices or Association where estimates than human that voices 80 percent of

you are looking and pointing

therapy will target any problem areas, teach children with ASD have sensory processing

• Fails to look where someone is

missing skills, and provide • opportunities Shows interest to in faces problems, which pointing can interfere with their

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 decreased sensory smiling issues or upset/scared and

evaluate your child’s communication profile provide interventions face to improve selfand

identify problem areas. It is important to regulation (wake-sleep cycles, level of

Communication

know if your child understands • Cries words differently as well for different alertness, needs self-quieting), • Delayed and sensory infrequent processing,

sounds

(e.g. hungry vs. tired)

of speech

as they say them and whether your child’s

motor development and adaptive behavior.

problems are associated with • Makes differences eye contact in and maintains for • Limited eye contact and may not

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

abilities, or with the demands • Responds of conversation.

to “no” and simple directions help improve • Does sensory not integration wave bye-byeissues

(e.g. “Come here”) and says one or

influencing behaviors in the home, occupational

two words

therapy practitioners also make suggestions

for changes to the classroom environment in

Behavior/Interests • Join to sound/rhythm by making or • Attending to unusual objects or

repeating sounds

order to assist patterns children with participating and

• Explores different toys and/objects progressing • at Over- school, or under-reactions playing, making to friends

with fingers and mouth and focusing in stimulation order to learn. Fine motor skills

• Show physical reaction when are excited also addressed • Repeats by a OTs. movement or routine

over and over

6

Sensory Autism Spectrum Processing Disorder Problems

A Autism neurophysiological is a neurodevelopmental condition where disorder the defined brain and by nervous persistent system deficits have in social

trouble communication processing and or social integrating interaction, stimulus. accompanied by restricted, repetitive

patterns of behavior, interests, or activities.

Fine Motor Skills

Referring to the coordination between small muscles, like those of the hands

and fingers.

16


Physical Therapy (PT)

Physical therapists are trained to work

with people to build or rebuild strength,

and increase mobility in the large muscle

groups in the body. Physical therapists may

work with very young children on basic

motor skills such as sitting, rolling, standing

and playing. They may also work with

parents to teach them some techniques for

helping their child build muscle strength,

coordination and skills.

Children with ASD may have low muscle

tone, or have a tough time with coordination

and sports. These issues can interfere with

basic day-to-day functioning and are almost

certain to interfere with social and physical

development. Children with autism would

rarely be termed physically disabled but

may have physical limitations.

Applied Behavior Analysis

(ABA) Therapy

Applied Behavior Analysis focuses on

principles of learning that include the idea

that people are more likely to repeat

behaviors that are rewarded than behaviors

that are not recognized or are ignored. ABA

can help children with autism by teaching

them to develop a number of skill sets at

the same time as it works to reduce the

likelihood of their engaging in problematic

behaviors.

Treatment begins with an assessment to

determine the child’s existing skills and the

development of an individualized program

to increase skills. A trained therapist works

one-on-one with a child (hours vary, but

many receive 20 to 40 hours a week) or in

conjunction with other therapists (such as

speech or occupational therapists) for a

“modified” approach for 10 to 15 hours

a week.

17


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

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.

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 student’s

ability to learn and interact.

Equine Therapy

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.

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 “outgrow”

their autism.

18


Appropriately?

Other Health Related Concerns

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

While the following differences are not defining characteristics of autism, many children may

developmental milestones can help parents know what to expect from their children.

experience these other challenges at some point throughout their lives. These co-morbid

conditions

While looking

typically

at observable

need to also

behaviors,

be addressed,

please

to

keep

allow

in

the

mind

child

that

to

development

regulate and

is

learn

individual

more

and

effectively.

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

This

to their

list includes

development.

some of

If

the

you

most

are concerned,

common conditions

please talk

present

to your

in

child’s

young

pediatrician

children with

as

ASD,

soon as

however

possible.

additional

The earlier

conditions

concerns

may

are addressed,

develop as a

the

child

better

gets

the

older.

long-term

It is important

prognosis

to have

is for

regular

the child,

visits whether with the your delay doctor is indeed and intervention autism or something team to discuss else. 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

Gastrointestinal Issues

Typical Development

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

signs of ASD, some Red Flags children for have Autism this

additional challenge. Spectrum Disorder (ASD)

Developmental Coordination

Many Social children Interaction experience some • Babbling type or of coos and smiles in

• Tends not to turn to someone

bowel distress off and on through response their

calling their name and seems not

Delay to hear or be interested; seems to

lifetime. Most commonly, children • Turns head may and have pays attention

constipation or diarrhea. In some children,

In addition to other hear environmental delays, some sounds children better

towards sounds and voices or where

than human voices

you are looking and pointing

the experience of pain may result in feeding experience a delay in the development of

difficulties, which may have a sensory

motor skills. These • Fails can to look include where but someone are not is

• Shows interest in faces

pointing

component as well.

limited to delays in walking or showing an

unusual posture • Absent or walking facial expression, pattern, lowered such as

decreased smiling or upset/scared

muscle tone or balance issues. Smaller muscle

face

groups may also be impacted, effecting

Communication

• Cries differently for different hand-eye needs coordination • Delayed and infrequent handwriting. sounds

(e.g. hungry vs. tired)

of speech

• Makes eye contact and maintains for

moving objects (even for a short time)

• Responds to “no” and simple directions

(e.g. “Come here”) and says one or

two words

• Limited eye contact and may not

look where another is looking

• Does not wave bye-bye

Behavior/Interests

• Join to sound/rhythm by making or

repeating sounds

• Explores different toys and/objects

with fingers and mouth

• Show physical reaction when excited

• Attending to unusual objects or

patterns

• Over- or under-reactions to

stimulation

• Repeats a movement or routine

over and over

6

Autism Co-morbid Spectrum Disorder

Autism Presence is a of neurodevelopmental one or more additional disorder conditions defined co-occurring by persistent with deficits the in social

communication primary one. and social interaction, accompanied by restricted, repetitive

patterns of behavior, interests, or activities.

19


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.

20


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


Local Agency Referral Information

Developmental Pediatricians

Atrium Developmental/Behavioral Pediatrics

704-403-2626

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.

22

FACT

Children with autism

can be emotional

and affectionate.

Non-Profit Programs

Guiding Parents to Services (GPS)

GPS@smartstartofmeck.org

704-943-9416

Effective July 1, 2021, GPS has made a program

change. Please call Autism Society of NC for

further support. See details below.

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 children’s

needs beyond parents’ 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

child’s best advocate. Services are provided free

of charge.

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).


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

Exceptional Children’s Assistance Center

(ECAC)

800-962-6817

ECAC will provide support and information

regarding your child’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 –

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.

23


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

Guiding Parents To Services: www.smartstartofmeck.org/gps

Autism Society of NC: www.autismsociety-nc.org

CDSA: www.beearly.nc.gov

CMS: www.cms.k12.nc.us

Exceptional Children’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

24


References

16 Early Signs of Autism. (n.d.). Retrieved July 21, 2020, from www.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 www.firstsigns.org

Evidence-Based Practices. (n.d.). Retrieved from www.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-developmentaldisabilities.

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.

25


26

Notes


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 guidebook has been made possible through the hard work and dedication of the

following agencies:

Alliance Center for Education

Autism Charlotte

Autism Society of North Carolina

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

University of North Carolina –

TEACCH

University of North Carolina –

Greensboro

27


W

W

E

N

E

W

E

S

S

S

Guiding Parents Parents to to Services

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), a funded program of Smart

Start of Mecklenburg County, 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.

Administered by:

of Mecklenburg County

© Copyright 2021 Smart Start of Mecklenburg County

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