15 Frequently Asked Questions About Autism Diagnosis and Next Steps
Figuring out how to get a diagnosis when you have concerns about your child meeting his or her developmental milestones can be confusing, but figuring out what to do after an autism diagnosis can be downright overwhelming. That’s why we’ve put together this list of 15 frequently asked questions surrounding an autism diagnosis and the next steps.
Question 1: How is ASD diagnosed?
Answer 1: Currently there are no laboratory blood tests or genetic links for the diagnosis of autism spectrum disorder (ASD). Therefore, it is important that you establish open communication and mutual trust with your child’s pediatrician to discuss any concerns you may have. Diagnosis is a result of two general steps: Developmental Screening and a Comprehensive Diagnostic Evaluation.
Question 2: What is a Developmental Screening?
Answer 2: The American Academy of Pediatrics currently recommends that all children be screened at their 18- and 24-month well-child visits for autism (Autism Speaks, 2018). These screenings are used to evaluate if basic learning skills and milestones are emerging in your child. These screenings typically consist of your child’s healthcare provider asking parents/caregivers questions, as well as talking and playing with your child to observe how he/she speaks, behaves, moves, and socially interacts (Centers for Disease and Control, 2015). These screenings alone will not provide a diagnosis, but they can raise red flags of concern for learning delays that warrant further testing by qualified medical professionals.
Question 3: What are some examples developmental screenings?
Answer 3: Some examples include:
Ages and Stages Questionnaire (ASQ)
Communication and Symbolic Behavior Scales (CSBS)
Parents Evaluation of Developmental Status (PEDS)
Modified Checklist for Autism in Toddlers (MCHAT)
Screening Tool for Autism in Toddlers and Young Children (STAT)
Question 4: What if the pediatrician expresses concerns about my child’s development?
Answer 4: If there are developmental concerns during the screening process, you should consult with the pediatrician about obtaining a referral for a Comprehensive Diagnostic Evaluation, to be completed by a licensed medical professional such as a neurologist, developmental behavioral pediatrician, or psychiatrist.
Question 5: What happens during a Comprehensive Diagnostic Evaluation?
Answer 5: The Comprehensive Diagnostic Evaluation is a thorough review of your child’s behavior and overall development. It will look at language skills, regression in skills, cognitive or learning problems, challenging behaviors, and attention span. It may also include a hearing and vision screening, genetic testing, neurological testing, and other medical testing (Centers for Disease and Control, 2015). After fully considering all possible factors, the medical doctor may or may not conclude with a diagnosis of ASD.
Question 6: What do I need to know before the Comprehensive Diagnostic Evaluation?
Answer 6: You might be asked:
What kind of language skills does your child have?
At what age did his/her symptoms start?
Has he/she experienced a regression in skills?
Does he/she have any related cognitive or learning problems?
Does he/she have any challenging behaviors?
Is he/she able to pay attention for extended periods?
Question 7: What are some of the formal diagnostic tools that may be used?
Answer 7: Formal diagnostic evaluation tools include:
Autism Diagnosis Interview-Revised (ADI-R)
Autism Diagnostic Observation Schedule-Generic (ADOS-G)
Childhood Autism Rating Scale (CARS)
Gilliam Autism Rating Scale-2nd Edition (GARS-2)
Question 8: My child has been diagnosed with ASD. I am feeling a bit overwhelmed. Help!
Answer 8: While there is no “cure” for autism, there are a wide variety of behavioral interventions and services that can help an individual achieve his or her fullest potential. After an initial autism diagnosis, family members may feel fear, anger, denial, sadness, and a mix of other emotions. It is also common to feel intimidated and unsure of what your next steps are in the process. ASD affects each child differently, so your child will require an individualized treatment plan unique to his or her needs. “It takes a team of people to help support an individual with autism” (Autism Speaks, 2018). A team of professionals can guide you through the next steps. These team members are going to be a valuable part of the overall treatment process. They will help you make informed decisions regarding the health, education, and treatment of your child.
Question 9: What types of professionals will be on my child’s treatment team?
Answer 9: Some of your team members may include your primary care provider (pediatric), neurologist, genetic specialist (if needed), developmental pediatrician, or psychiatrist. Other members that you will assemble as an integral part of the team include service providers such as: Licensed and Board Certified Behavior Analysts, Speech and Language Pathologists, Occupational Therapists, and/or Physical Therapists, and Teachers.
Question 10: Why is Applied Behavior Analysis recommended for my child diagnosed with ASD?
Answer 10: “According to reports by the American Academy of Pediatrics and the National Research Council, behavior and communication approaches that help children with ASD are those that provide structure, direction, and organization for the child in addition to family participation” (Centers for Disease and Control, 2015). A critical element is to choose treatments that are empirically validated through research, as these are the only options proven to increase developmentally appropriate skills and decrease maladaptive behavior. Applied Behavior Analysis (ABA) is an empirically validated therapy based on the science of human behavior and learning. Furthermore, ABA is not a “one size fits all” type of approach, as each program is written to be individualized to meet the needs of the learner. It provides structure, direction, and organization to the child and family.
Question 11: How can I ensure a successful treatment plan for my child?
Answer 11: Communication is a key element as you take your next steps forward. The team members will ask you a lot of questions about your child. Striving to have an honest and informed relationship with every member of your child’s team is vital to successful treatment.
You will want to communicate with some of the individual's team members (such as teachers) on a daily basis. Some ways to do this are:
Face to face interactions
Using a notebook where you can write to one another back and forth
Setting up team meetings at least once per month or per quarter where everyone can communicate about progress and what steps are going to be taken next.
Question 12: Why is communication with the team so important?
Answer 12: A key part of communication is to be an active participant in the treatment sessions as it allows you to see first-hand what is going on during treatment. As an active member in these services, you will be able to observe your child and work with the team members to ensure you are utilizing techniques cohesively and consistently both at home and during treatment. Research shows that being an active participant increases the skill level of the parent/caregiver and allows you to more closely monitor progress.
Question 13: Where do I begin to find an Applied Behavior Analysis (ABA) provider?
Answer 13: Whoever works with your child should be well qualified and experienced with working with children on the spectrum. You will come across different types of therapies. Whichever you choose, be sure to choose providers who are utilizing evidence-based practices. The Association for Science in Autism Treatment website provides free resources that tackle the array of considerations surrounding autism treatment.
You can find qualified ABA providers in your area on the BACB website (https://www.bacb.com), the Autism Speaks website (https://www.autismspeaks.org), and by doing an internet search of your own.
Question 14: How do I know if a provider is qualified?
Answer 14: For ABA therapy, providers should hold one of the certifications from the Behavior Analysis Certification Board (BACB): Registered Behavior Technician (RBT), Board Certified Assistant Behavior Analyst (BCaBA), or Board Certified Behavior Analyst (BCBA). In New York, the BCBA must also be a Licensed Behavior Analyst (LBA).
Question 15: What questions should I ask a potential ABA provider?
Answer 15: You should ask the following questions:
What is your process for establishing a program for my child?
What types of assessments do you do?
What research supports the intervention?
What training will I, the parent, receive?
How will you train the staff to work with my child?
How will we work together as a team?
Do you work cooperatively with my child’s school district, therapists, and other providers?
What steps do you take if my child is not making progress?
References
ABA Provider. (2018) https://www.iidc.indiana.edu/pages/what-to-consider-when-looking-for-a-qualified-aba-provider
Assembling your team after a diagnosis. (2018, September 2). Retrieved from http://www.autismspeaks.org
Autismspeaks. (2018). Retrieved from https://www.autismspeaks.org/
Behavior Analyst Certification Board. (2018). Retrieved from https://www.bacb.com/
Levermore-Rich, K. Guidelines for choosing an ABA
Pratt, C. et al. What to consider when looking for a qualified
Provider. (2018). http://autism-help.org/autism-downloads/aba%20Provider-Guidelines.pdf
Pratt, C. et al. What to consider when looking for a qualified
Screening and Diagnosis. (2018). Retrieved from http://www.autismspeaks.org
Screening and Diagnosis. (2015, February 26). Retrieved from http://www.cdc.gov
Treatment (2015, February 24). Retrieved from http://www.cdc.gov