your autism journey: first steps after diagnosis
TRANSCRIPT
YOUR AUTISM JOURNEY:FIRST STEPS AFTER DIAGNOSIS
LISA BANNWARTH, ED.S., NCSP
LIGHTING THE WAY CONFERENCE
JUNE 14-15, 2018
"Don't think that there's a different, better child 'hiding' behind the autism. This is your child. Love the child in front of you. Encourage his strengths, celebrate his quirks, and improve his weaknesses, the way you would with any child."
Claire Scovell LaZebnik, author of Growing Up on the Spectrum
TODAY
What is ASD?
Timeline
•Getting Organized
•Connecting with Support
•Researching Treatment
•Starting Services
First 100 Days Toolkit
INTRODUCTIONS
• Lisa Bannwarth
• School Psychologist
• From Chandler, AZ. Lived in Sioux Falls, SD for 7 years
• Married with 2 daughters
• Worked in group homes, residential facilities, daycares, public schools, and clinical settings
• ASD evaluation diagnostic clinic
Lisa Bannwarth, Ed.S., NCSP
Insight Educational Services
Insighteducationalservices.com
AUTISM SPECTRUM DISORDER
Technical definition:
A pervasive developmental
disorder that manifests itself in infancy, severely affects the
development of social interaction and communication skills and
results in the presence of stereotyped behaviors, interests, and
activities.
CHARACTERISTICS
ASD
Social
Cognitive
CommunicationSensory
Interests
WHAT WE KNOW:
• ASD occurs in all racial, ethnic, and socioeconomic groups
• Ratio of boys to girls is 5:1
• Boys: 1 in 42
• Girls: 1 in 189
• No known cure, but prognosis improves with early identification and intensive intervention
CAUSES?
• Brain-based disorder
• Genetic component
• Rare gene mutations have been identified
• Higher rate for siblings; even higher rate for identical twins
• Environmental factors that could affect the baby in utero may increase the risk
• Certain prescription drugs, maternal illness and environmental toxins linked with a higher risk of ASD
RISK FACTORS
• Having a parent or sibling with ASD
• Children born to older parents are at a higher risk
• Children who are born prematurely or with low birth weight are at greater risk
• Commonly occurs with other developmental, psychiatric, neurologic, chromosomal, and genetic diagnoses
Center for Disease Control, 2014
DIAGNOSIS• Diagnosis made based on observable behaviors and development
• No blood or medical test
• Often starts with developmental screening
• Well-child doctor visits
• Comprehensive Diagnostic Evaluation
• Best practice incudes a team
• Physicians (developmental pediatrician or child psychiatrist)
• Psychologist
• Speech/language pathologist
• Occupational therapist
• Nutritionist
• Audiologist
• Educator/early childhood specialist
A valid and reliable diagnosis can be made a trained team of
professionals by 2 years of age.
Early diagnosis is key! Leads to early interventions and better
outcomes.
DIAGNOSIS
Medical diagnosis
• DSM-5 Criteria
• Team often includes physician or psychologist
• Sometimes needed for insurance purposes (i.e. outpatient ABA therapy)
• Rule in/rule out other diagnoses
• Differential diagnosis
Educational diagnosis
• “Determination of Eligibility”
• SD eligibility language same as DSM-5
• Even if you have a previous medical diagnosis of ASD, school teams will often still conduct their own evaluations
• Necessary for determining eligibility for SPED
• Department of Education require specific (and sometimes more) assessments
EVALUATIONS – WHERE TO GO IN SOUTH DAKOTA
Team Evaluations
• Center for Disabilities
• Sioux Falls
• LifeScape
• Sioux Falls & Rapid City
• Autism Behavioral Consulting
• Sioux Falls
• Avera Behavioral Health
• Sioux Falls
• Black Hills Special Services Coop
• West River
Questions to ask when scheduling an evaluation:
• Who is involved in the evaluation?
• What specific areas will be evaluated?
• Do you take insurance? What is the cost?
• Will you collaborate with schools to gain information and share results/recommendations?
• Will I receive a written report with DSM-5 diagnoses?
Always start with your local school district!
Enjoy Your Child
Start Services
Research Treatment
Connect with
Support
Get organized
Complete Evaluations
GET ORGANIZED• You will accumulate A LOT of paperwork
• Organize your reports, documents, and information
• Find a simple system that works for you
• SD Parent Connection FILE
http://doe.sd.gov/sped/documents/16-Eligib.pdf
• All electronic
• Back up
• Save to a Drive or Cloud
• Ask for reports in an electronic format
• Keep a running document of important dates, evaluations, milestones
Natalie DOB: 7/11/2011
January 2013 – Birth to 3 Evaluation
March 2013– started receiving speech and OT with Birth to 3
August 2013 – first seizure
September 2014 – Natalie started putting 2-words together in phrases (“Mama home”), 3 years, 2 months old
December 2014 – Autism Evaluation at LifeScape
CONNECT WITH SUPPORT
Sesame Street and Autism: Being a Supportive Parent
Take care of yourself, so you can better take care of your
children
• Do simple activities that you enjoy and help you feel calm
• Go for a walk – exercise reduces stress
• Take a few deep breaths
• Listen to a favorite song
• Have a picture or small object that makes you feel good and keep it close at hand
Connect with family, friends, and others who understand
your journey
• Center for Disabilities Monthly Support Groups, Sioux Falls
• Aberdeen Area Support Group
• Autism Society of the Black Hills
• Siouxland Area
• Facebook Groups
• Contact SD Parent Connection for more info
RESEARCH TREATMENT & START SERVICES
If your child is 3 or younger
• Start with Birth to 3
• Can include speech/language, feeding, occupational therapy, physical therapy, sensory needs, vision, hearing, cognitive/learning skills, social skills, behavior, family training and support, etc.
If your child is older than 3
• Start with your local school district
• May want to do their own evaluations
• Will want to focus on needs that have an ‘educational impact’
RESEARCH TREATMENT AND START SERVICES
Autism Spectrum Disorders: Guide to Evidence-Based Interventions
Missouri Autism Guidelines Initiative
DIRECT SERVICE PROVIDERS IN THE AREA (IN ADDITION TO SCHOOL SERVICES)
LifeScape
• Therapy& psychological services (outpatient and outreach)
• New ABA program
Behavior Care Specialists, Inc.
• ABA therapy
• Comprehensive programming
Autism Behavioral Consulting, LLC
• Social Thinking groups
• Team training
Accelerate Center
• OT & speech
• Autism & other developmental delays
Southwest West Central Service Cooperative
• Will consult with the school
• ABA services to treat challenging bx
Bloom
• Developmental play center
• Offers speech therapy, social skills, feeding therapy, PT, yoga, etc.
…plus more!
FIRST 100 DAYS TOOLKIT
The Autism Speaks 'First 100 Days Kit' is a comprehensive resource which will assist families in getting the information they need in the first 100 days after an autism diagnosis.
The kit includes the following information:
• Why does my child need a diagnosis of autism?
• Physical and medical issues that may accompany autism
• Tips from experienced parents
• How will this affect our family?
• Accessing services
• Treatments for core symptoms
• Choosing the right intervention
• Hiring therapists
• Suggested books and websites
• Action plan for the next 100 days
...and more
ACTION PLAN• Where are you along the journey?
• What do you need to do tomorrow to help you and your family/child?
• Connect with a support group or support system
• Schedule evaluation
• Get documents and reports organized and into a system
• Call for more info on feeding therapy
• Spend some 1:1 time with neurotypical child
• Go for a run
• Research treatments and interventions
FOCUS ON YOUR CHILD
• Through every screening, evaluation, and new program, remember to focus on what your child does well and things that motivate them, not just on deficits and challenges
• Set priorities and make a plan
• Every family’s timeline and goals will be different…that’s ok!
• Don’t do it alone
• Get help
• Find support
• Take a break when needed
• Find professionals you can trust
• Don’t be afraid to make a change
THANK YOU!
Questions?