Perkins School for the Blind Transition Center

Engaging and Supporting Parents of Children Recently Diagnosed with Autism

No parent wants to learn that their child is autistic. Hopes and dreams for a neurotypical child are mostly abandoned and replaced by fear, uncertainty and, often, despair. Thus, effective professional intervention must begin with active listening to grasp the parent perspective on their child’s special needs, degree of parent’s emotional dysphoria and other salient issues in family dynamics. This process productively enables formation of an effective alliance between clinicians and parent(s) to begin addressing the needs and challenges for a newly diagnosed child or adult with autism.

Caring parents with their son at a therapy session with counselor

An Autism Spectrum Disorder (ASD) diagnosis for parents with young children can be isolating. There are many added responsibilities that parents are not always prepared to pursue for their children. Parents often feel that the burden that comes with this diagnosis is too high. They often feel that they have limited access to resources they need. As parents embark on the journey to secure support for a loved one, it is important to educate oneself, practice self-care, and prepare to be an active part of the child’s treatment. Education and training have been proven to help alleviate some of these feelings for parents as they become more familiar with Applied Behavior Analysis (ABA) and learn the tools to manage their child’s behavior. Beginning treatment as soon as possible is paramount. As a person grows, they form routines and develop behaviors that are reinforced, sometimes inadvertently, by parents and others. Some of those routines and behaviors may be quite challenging in nature and can result in a child being stigmatized or prevented from participating in activities with their neurotypical peers.

Today, pediatricians are trained to screen children achievement of developmental milestones. If they seem to fall behind, they refer parents to neurologists, or developmental specialists, where they can further evaluate their child. From there, appropriate diagnostics can be made. If a child is under 3 years of age, Early Intervention Services are almost always recommended and are available in every state. Once an autism diagnosis is obtained, parents are given a prescription for ABA services. At that point, the parents must look for resources on their own, whether state funded or through their personal insurance provider.

First Children Services

Behavior Analysts are educated to not only treat a child with Autism but also to treat and work actively with the child’s parents or caretaker. The expectation is that parents will participate in their child’s treatment from the onset of services on a weekly or monthly. Once specific skills are mastered, or behaviors reduced, a Board Certified Behavior Analyst (BCBA) will work with the families to utilize these skills and strategies outside of therapy sessions. For progress to be sustained, care givers must continue to transpose the work that the clinicians provide into home and community settings. Research shows that parental involvement is crucial for maximizing the child’s progress.

ABA therapy will focus on addressing the autistic child’s skills deficits and challenging behaviors. An evaluation is completed at the outset of treatment to assess individual deficits and incorporate the child’s strengths into a treatment plan. Parental input is also incorporated into daily programming. The goal is for the child to be able to be a part of family life, with minimal support, by the end of services. In addition to ABA services, parents may be encouraged by the child’s physician to seek additional services such as Physical Therapy, Occupational Therapy, and Speech Therapy. ABA providers will work hand in hand with outside providers as part of an interdisciplinary treatment approach. A behavior intervention program, no matter how well written, is only as effective as the people who are implementing it. This requires training and consistency across all settings including the home and community. With ABA therapy, services may be provided in the home, in the community as well as clinic-based services.

Reducing ABA therapy hours, or recommending discharge, can leave many families feeling apprehensive or anxious, even when their child has made remarkable progress throughout the course of treatment. ABA therapy becomes intertwined with the family’s daily routine and structure, and most families value the consistency and predictability of having additional support and resources available to them as needed. Discharging from services does not have to be a scary process for families and continuing to provide regular parent training throughout the service fading stage is a help.

It is important that families and clinicians have transparent conversations about long-term goals and hopes of outcomes for ABA therapy early on to ensure that reasonable expectations are discussed and agreed upon. Similarly, criteria to fade direct ABA therapy hours and ultimately criteria to discharge from services should be established at the onset of treatment. Actual timelines to fade hours or discharge services will be based on the client’s progress or regression with each goal area compared to where they started with each skill.

Consistent parent training is also extremely important when fading hours and planning for discharge. This serves to ensure skills are being maintained and generalized by the child and that families can replicate and follow-through with interventions that were once predominantly overseen and implemented by trained clinicians. Once effective interventions may need to be reconsidered if they prove to be ineffective in a different setting or when implemented by different people. Interventions may look different when run predominantly by the family, and caregivers should feel empowered to speak up if something is not working.

The final stage of discharge involves touch points between the family and clinician to assess continued stability and the need for any additional supports after direct services have ended. The clinician will provide the family with a discharge summary outlining their child’s progress on long-term goals, a summary of treatment and outcomes, clinical recommendations for ongoing support, and information on additional community resources the family can look into should the need arise for services again in the future. While medically-based ABA therapy is not intended to be a lifelong therapy, a child may need direct ABA therapy again even after successful discharge if new challenges occur that require a higher level of care again. It is not uncommon for a child to have several cycles of ABA therapy during transitional periods in their life.

Once a child is diagnosed with autism, a multitude of services and visits become centered around the identified child. As illustrated, this typically triggers a substantial increase in caretaker responsibilities and expenses. This scenario can often leave neurotypical siblings feeling isolated, worried, and insecure about the new family dynamic. Siblings need to have a good grasp on revised circumstances and experience ongoing parental support. Parents, too, need support while rising to the time and transportation needs of their autistic child. It’s essential for parents to structure time off, and alone time, where possible, to support their adult relationships and emotional equilibrium as they move forward with their revised everyday life.

Georgia Efthimiou, MA, BCBA, is Northern New Jersey Regional Director, Kristen Daneker, MS, BCBA, is Pennsylvania Regional Director, Brandon Sierchio, MA, BCBA, is Southern New Jersey Regional Director, and Howard Savin, PhD, is Clinical Advisor at First Children Services.

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