Advocating For Your Child

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

Note: This article has been adapted with permission from Attentive Behavior Care and the authors.

Credit: Artwork by Marina Azimova, EdM, MSW, BCBA

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 member.

Things You Should Know

Early 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

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 report.

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 focuses on assessment and treatment of activities of daily living (such as eating, dressing, playing) and physical therapists focuses 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.

ABA Providers

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 development.

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.

Additional Resources

For more information about Attentive Behavior Care and how we can help your child, please visit our website and contact us today.

Citation for this article:

Ramirez, H., & Pantelides, M. (2019). Clinical corner: What does it mean to become an advocate for my child on multi-disciplinary teams? Science in Autism Treatment, 16(12).

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