This month’s ASAT feature comes to us from Heyde Ramirez, MA, BCBA, LBA and Maria Pantelides, MA, BCBA, LBA. To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook! You can read more of our ASAT featured posts here.
My 3-year-old daughter demonstrates symptoms of ASD and a diagnosis is pending. I am encountering an array of professionals and am wondering who does what and how I can better understand these relationships while advocating for my daughter.
Answered by Heyde Ramirez, MA, BCBA, LBA and Maria Pantelides, MA, BCBA, LBA
Attentive Behavior Care
article has been adapted with permission from Attentive Behavior Care and the
authors and will be published in the December 2019 issue of Science in Autism
Treatment, the monthly publication of the Association for Science in Autism
The definition of the word advocate is to speak,
plead, or argue in favor of. When you have a child with special needs, one of
the biggest roles you will ever undertake is that of being your child’s
advocate. As an advocate, you are your daughter’s voice to make sure she is
treated fairly, recognized, and afforded access to evidence-based practices, as
well as all the services and resources she needs in order to reach her full
potential. Naturally, a parent is often the most important advocate although a
child can have multiple advocates: for example, a lawyer or another family
Things You Should Know
intensive intervention will provide your daughter with a path to making the
most gains. It will be important that intervention starts as soon as possible
following a diagnosis, and is carried out by individuals who utilize best
practices based on research.
Be prepared to present facts and documentation in support of getting your daughter’s needs met. It is important that you ask many questions, listen to the answers closely, and take lots of notes. Save all emails so you can refer back to them in the future and have a record of the communications regarding your daughter’s service provision.
It is also important that you know your child’s
rights. The disability and mental health systems are complex. Having a
knowledgeable “advocate” to assist you can be an invaluable support.
Talk to other parents who have walked this path before you so you can learn
from their experiences. Each state has their own set of laws and regulations, so it
could be helpful to hire a lawyer if needed.
In your journey, you and your daughter will
encounter an array of professionals:
Medical providers will be your go-to resource
when it comes to making sure that your child’s medical needs are met. They were
probably your first contact, especially since your daughter is not yet in
school. Your child’s medical team may
include several types of medical doctors.
Pediatrician/Primary Care Doctor: The
pediatrician will oversee and manage your daughter’s health needs and monitor
her development. At check-up visits, talk to the pediatrician about your
concerns. Remember that your medical providers rely on the information you
Keep your pediatrician apprised of progress your daughter is making
and any areas where you continue to have concerns.
Pediatric Dentist: The pediatric dentist has
been trained to treat children from birth to adolescence. Dental visits can be
difficult if your child has autism. Fill in the dentist on your daughter’s
needs. Nowadays there are many pediatric dental clinics available that are
willing to follow through with behavior intervention plans and work with you to
make the dental visit less stressful for your daughter. Ask your pediatrician
for a referral or talk with other parents who are happy with their dental care providers (please see a recently
published resource list from ASAT).
Psychiatrist/Psychologist: If your daughter demonstrates various symptoms not related to an ASD diagnosis, then contact with a psychiatrist or psychologist would be beneficial. Other diagnoses can be extremely important when it comes to receiving the necessary individualized treatments which may include medication. In some cases, assessment is carried out by a psychologist who typically holds a PhD or a PsyD rather than a medical degree. A psychologist could provide counseling or behavioral treatment for behaviors that occur.
As an advocate for your child, you can seek out
a comprehensive psychiatric/psychological evaluation for your child. These
evaluations provide important information that should be shared with the entire
team. The information provided can include, but is not limited to, direct
observations, parental reports, autism diagnostic testing results, IQ testing
results, findings from measures of adaptive behavior, other potential
diagnoses, and recommendations for treatment. If anything you read is not clear
or seems inaccurate, be sure to ask questions.
The School Team
Children spend a large portion of their lives learning, sharing meals, and socializing in school, and teachers, teacher’s assistants, and other school staff will get to know your child on an individual and personal level. The school team will quickly learn about how your child functions in school and what goals might be needed to ensure her success in school. If your daughter were to be diagnosed with ASD, you will likely meet with the school team several times a year at parent-teacher conferences and other meetings such as Individualized Education Plan (IEP) meetings.
Federal law provides for procedural safeguards to ensure your child receives the supports and accommodations needed to help her make progress and work towards her potential. If you feel that your daughter is not making progress or that the school is not meeting her needs, speak up and ask questions! Include related documentation to support or convey your concerns.
Special Education Teacher/General Education Teacher: Depending on the needs of your daughter and what type of classroom she
is in, she may receive instruction from a special education teacher and/or a
general education teacher. Special education teachers are trained to work with
students who present with various disabilities. In general, teachers make
themselves formally available to discuss academic growth at least twice a year
at parent-teacher conferences. When you have questions or concerns about your
daughter’s academic or social progress at school, request extra meetings with teachers or the school team. If there are barriers in place that are slowing progress, the teacher can work with you and the team in order to
address those barriers.
Teacher’s Assistants and Aides (Paraprofessionals): It’s possible for your daughter to have multiple teacher’s aides in the
classroom. Their role is to assist the teacher in maintaining a safe and
effective teaching environment. They may implement the education and behavior
intervention plans developed for your child and/or other accommodations made so
that your daughter has the appropriate support to work towards mastery of the
goals on her IEP. There can be limitations on what exactly the teacher’s aide
can do and this can vary by state. For example, in New York, a teacher’s aide
with a teaching assistant certificate is allowed to provide direct instruction
to students under the supervision of the certified teacher. You can request
that the teacher’s aides also be present during team meetings. They will also
know your child very well and may be able to provide additional information on
how your daughter is doing.
Related Service Providers
If your child has an Individualized Education Plan (IEP) there is a chance she has a team that includes various therapists such as speech/language, occupational, and physical therapists. In some states, a prescription is necessary to receive a related service, such as occupational therapy. Keep the pediatrician up to date on the information you receive from related service providers.
Speech/Language Pathologists: Speech language
pathologists (SLP) are trained to prevent, assess, diagnose, and treat speech,
language, and communication disorders in children and adults. Many have also
received training to address feeding issues. Whether your child is non-vocal,
has difficulties being understood, gags when trying to swallow food, or
presents with other communication or speech deficits, a speech/language
pathologist can be a great resource and valuable member of the team. You can
request that your daughter be evaluated and that goals be developed to increase
your daughter’s receptive and expressive communication abilities.
Occupational/Physical therapists: These providers are recommended when your child has motor difficulties completing everyday activities. Occupational and physical therapists do their best to help your child develop and improve their fine and gross motor skills so that they can interact with their environment as independently as possible. Occupational Therapists typically focus on assessment and treatment of activities of daily living (such as eating, dressing, playing) and physical therapists focus on gross motor skills (e.g., walking, climbing stairs). As an advocate, present your concerns regarding what your child can and cannot do. The aim is always to increase independence. For example, the ability to open a container can actually be life-changing.
Applied behavior analysis is the treatment of
choice for ASD as it is an evidence-based practice. So, you may have contact
with providers who specialize in this method. The Board Certified Behavior
Analyst (BCBA) and Registered Behavior Technicians (RBT) may be invaluable
members of your team, particularly if your daughter is receiving services in
the home or in an early intervention setting. Some schools may not have BCBA’s
or RBT’s on staff and School Psychologists may be responsible for intervention
Board Certified Behavior Analyst (BCBA): The BCBA on your child’s team is responsible for assessing your
child’s current ability and any barriers to learning that may be present. A
certified behavior analyst conducts functional assessments in order to identify problematic behaviors, the
events that trigger them, why behaviors are occurring (e.g., is it to get away
from something, to gain access to something), and possible replacement behavior
that can be taught. The BCBA on your team may provide you with training so that
you can also implement recommended strategies with your child. They are also
prepared to work with the team to best serve your child and increase her
quality of life. In some cases, the school psychologist will fulfill this role.
Registered Behavior Technician (RBT):
Registered Behavior technicians implement the behavior and skill acquisition
treatment plan and collect data as directed by the BCBA.
All of these people come together and form a
team that also includes the family and of course, your child. As you step into
this new role as an advocate for your child, take advantage of supports and
resources that are available to you. Members of the team may recommend webinars
or other materials that will provide you accurate up-to-date information about
the challenges your daughter faces and effective interventions.
For more information about Attentive Behavior Care and
how we can help your child, please visit our website and contact us today.
Heyde Ramirez received her Bachelor’s Degree in Psychology and her Master’s Degree in Applied Behavior Analysis from Queens College in 2012. As part of her graduate course work, Heyde worked with students with Autism and subsequently published a study on simultaneous prompting procedures. Following graduation, she became a Board Certified Behavior Analyst (BCBA) and continued to work with individuals with Autism and other developmental disabilities across various settings providing direct therapy, BCBA supervision, parent training, assessment and treatment planning.
Maria Pantelides is a Board-Certified Behavior Analyst and Licensed Behavior Analyst in the states of Connecticut, Maryland, Massachusetts, and New York with over 10 years of experience working with children, teens, and adults with autism and providing ABA services. Maria earned her Bachelor of Arts degree in Psychology with honors and her Masters of Arts degree in General Psychology with a focus in Applied Behavior Analysis, from Queens College, City University of New York. Maria has provided one to one instruction, supervision, training, parent training, and consultation to home and school programs. Maria specialized in the treatment of children with autism in both the home, community, and school setting. Maria is currently a Regional Clinical Director with Attentive Behavior Mental Health Counseling, PC. As Regional Clinical Director she supports and monitors BCBAs, technicians, and families in getting quality ABA services.