The Parenting Spectrum : The
Challenges and Gifts of Raising a
Child with Autism Spectrum Disorder
Sherry Mergner, MSW, LCSW
University of North Carolina at Chapel Hill
Clinical Assistant Professor/AHEC Liaison, School of Social Work
Social Work Faculty, Leadership Education in Neurodevelopmental
and Related Disabilites (LEND) Program, Carolina Institute for
Developmental Disabilities
Mother of 15 year old Noah with ASD and 13 year old Nathan
sherry.mergner@cidd.unc.edu
(919) 962-6463
What We Were Seeing
(Birth – 9 months)
1.
Problems in social communication
and interaction across contexts

Aloof manner – impairments in facial
expression and body posture.

Little or no eye contact.

Non-responsive to verbal cues; acts deaf.
What We Were Seeing
(Birth – 9 months)

Difficulty expressing needs; uses
gestures instead of words.

Lake of spontaneous seeking to share
enjoyment, interests or achievements
with other people.

Difficulty mixing with other children;
prefers to be alone – lack of social or
emotional reciprocity.
What We Were Seeing
(Birth – 9 months)
Hyper-or hypo-reactivity to sensory input or
unusual interest in sensory aspects of
environment
2.

Such as sight, hearing, touch, balance, smell, taste,
reaction to pain.

Tantrums; displayed extreme distress for no
apparent reason.

Sleep disturbances – needed to by held, rocked
vigorously, bounced. Easily awakened by sounds.
What We Were Seeing
(9+ months)
1.
Continued Deficits in Social Communication
and Social Interaction

Adequate speech (we saw no delays in speech).

Marked impairment in the ability to initiate or
sustain a conversation with others.
What We Were Seeing
(9+ months)

Stereotyped and repetitive use of language or
idiosyncratic language.

Lack of varied, spontaneous make-believe play
or social .
What We Were Seeing
(9+ months
Restricted, or repetitive patterns of
behavior, interests and activities.
2.

Stereotyped or repetitive speech, motor movements, or
use of objects

Excessive adherence to routines, ritualized patterns of
verbal or nonverbal behavior, or excessive resistance to
change.

Highly restricted, fixated interests that are abnormal in
intensity or focus.

Continued sensory issues
Other Signs
9 months +

Noticeable physical over activity

Extreme sensory sensitivity

Continued sleep disturbance

Delayed development of fine motor skills
What We Were Feeling

Confused

Questioning ourselves as Parents

Frustrated/Embarrassed/Isolated/Alone

Exhausted – emotionally and physically

Angry/Depressed/Afraid

Trying to be Hopeful
THE DIAGNOSIS
What We Were Feeling

Intuition confirmed – Relieved

Confused and Overwhelmed

Can we please stay in denial?

Anger

Fear – “What does the future hold?
What We Were Feeling

Powerlessness

Disappointment/Grief

Guilt

Depressed/Sadness

Gradual Acceptance
THE FIERCE ADVOCATE
Evaluations
Treatment
Medication
Respite/Support People
Friends/Social
Belonging to a Community
THE IMPACT
Personal Stress
 No
time to/for self
 Emotionally
and physically
exhausted
 Mixed
emotions about child and
parenting
 Family
of origin issues triggered
Personal Stress
Former spiritual concepts challenged
Grieving
Rewriting hopes and dreams
Concerns for future
Family Stress
Limitations on where we can go, who we
can go with and what we can do.
Extra preparation
Exit plan
Employ help
Marital Stress
Financial Stress
Education and Social Negotiations
No Time/No Energy
Differing Ideas on Parenting
Lack of Support
Isolation from Community
Sibling Stress
Communication and play differences
Jealousy and rivalry for parents attention
Target of aggression
Trying to make up for deficits
Concern for parents’ stress and grief
Coming To Acceptance!
What to Do and How to Cope?
Seek Out Help for Yourself
& Family

Trusted and knowledgeable professionals

Other parents who have children with autism

Talk about your feeling

Rely on Positive Sources in Your Life
Seek Out Help for Your Child

Begin Early Intervention & Treatment Immediately

Begin Early Education of Peers Immediately

Keep Daily Routines as Normal as Possible

Be Consistent

Reinforce Positive Behavior

Love Him/Her for Who They Are!
Things to Remember







Stay in the Moment
Remember Time is on Your Side
Don’t Make Any Assumptions
Don’t Take Anything Personally
Recognize That You Are Not Alone
Do Not Be Afraid to Show Emotion
Always Do Your Best
Managing and Honoring

Learn the Facts about Autism and
Intervention/Treatment Modalities

Learn about the IEP Process/School
System

Learn to Advocate for Your Child –
Educate Others (neighborhood, peers,
school, family)
Managing and Honoring

Teach Social Thinking and Social Skills

Guide their interests in ways that will
provide meaning and purpose to their lives

Give them permission to be themselves
They are perfect just the way they are!

Build Self-Esteem
THE BENEFITS OF THE
JOURNEY
The Benefits of the Journey

Learn how to both give and receive help
“Not Knowing is Not Failure!!”

Find balance in self-care and caring for
“There’s more to life than autism”
others

Develop a deeper level of compassion
empathy
and
The Benefits of the Journey

Develop deeper & more meaningful
relationships

Increased appreciation for self, child,
family and professionals

Deeper Humility

Become an Advocate!
The Benefits of the Journey

Move past our own “comfort zone” –
stretching our awareness and perspective

Deeper trust in Self/Increased Faith

Shift in priorities

Rethinking the meaning of love and joy
The Benefits of the Journey
Increased personal knowledge of
“Divine Love” and Grace.
Remember the purpose of this
Journey!
Rethinking it all!!
“Nobody signs up to have a child
with special needs.
Then you realize that this is a gift,
this child is the light.
And if you can nourish that light
and let it shine, you have
an opportunity to get closer to God,
and that is Grace.”
-John C. McGinley, actor and costar of the TV show Scrubs,
on his son, Max, who has Down syndrome
sherry.mergner@cidd.unc.edu
919-962-6463