Sarah Martinez sat in her home office listening intently to her four-year-old son’s developmental pediatrician rattle off a list of autism treatment centers across the city. Along with the names and locations of each center she was given a brief explanation of the different types of therapies offered. Sarah was to call the center of her choice the next day to set up an appointment for her son to meet with the therapist. However, as the pediatrician finished her list at 3:48 PM on that Tuesday afternoon Sarah’s mind was elsewhere. She couldn’t even begin to think about a therapist when all she could think about was her son and her family. How was she supposed to pick a good therapist when she had no idea what type of help her son would need?
Parenting a child with autism begins with a torrent of unfamiliar vocabulary, novel strategies, and obscure centers. Selecting an autism center is the most critical decision many parents will make for their child and family, yet often they begin the process without a clear understanding of what matters most.
Evidence-based Programming Forms the Foundation
When looking for an autism center for a child with autism spectra disorder (ASD), there are many characteristics that can make one center more appealing than another. For some, the list of center characteristics starts with the evidence-based treatments the center offers for autism. For families who want the best for their child with autism, that means ABA using models such as discrete trial training (DTT) or positive behavioral supports (PBS). Of course, there are many high quality centers staffed by skilled and dedicated ABA providers. The problem is that not all centers are created equal. The biggest variable is the quality of the intervention actually provided by the center.
Unlike many quality centers, we don’t just say that we follow an “evidence-based” approach to caring for and educating young children and their families. Documentation of our curriculum as well as data collection and progress monitoring records are available for review. Staff will be able to explain specific interventions and the criteria used to measure success. Instead of reproducing generic programs for groups of children, our plans and programs are individualized for each child.
In addition to best practices, we are always looking to learn the latest research around autism intervention and will incorporate findings as they become available to us. We regularly attend conferences, ongoing training, and when possible, will work with researchers and top practitioners in the field.
Staff Qualifications Go Beyond Credentials
Although quality centers have a Board Certified Behavior Analyst (BCBA) lead the program development and oversight, there is also a Registered Behavior Technician (RBT) providing the majority of the therapy hours. Like there is more to a BCBAs role than meets the eye, there is also more to an RBT’s role than meets the eye. Training for RBTs can be a large investment of quality training as well as more than the minimum amount of supervised hours to provide quality ABA Therapy to the clients.
We bookkeep the turnover rate of our therapy staff as an indicator of quality at the center. High turnover can be really problematic for the kids and undermine the therapeutic relationship in addition to being a sign of poor management, low compensation or other less than ideal working conditions.
The best centers at retaining staff is an good center with a great work environment and competitive salaries. On your next visit to a center ask what the average tenure is and how staff feel about their jobs. This will give you a much more accurate read of the center than the glossy brochures put out by the centers to lure you in.
Family Involvement Transforms Outcomes
Importantly, the most effective interventions for children with Autism Spectrum Disorders are those that extend beyond the clinical setting and into the child’s daily life. As such, it is critical that interventions work through the child’s parents and caregivers, who are already embedded in the child’s world. At outstanding centers, parents and caregivers are valued as part of the team and on an equal footing with professionals who are delivering programs.
Quality centers provide ongoing parent training, translate interventions for carryover into the home, and provide a setting in which families practice new skills with therapist guidance. If a child learns skills in the treatment room but does not generalize use of those skills to home and community then he has received incomplete treatment.
While many centers provide additional support through sibling support groups or family counseling, Autism changes the entire system and some centers go further to create a more comprehensive center to support families through diagnosis, service development, advocacy, and support.
Individualization Drives Programming Decisions
Each child brings his or her own strengths and challenges as well as learning and developmental styles to treatment. Exceptional centers provide in-depth assessments that go beyond a simple list of test scores and provide a window into how the child functions in several settings and under various circumstances.
Assessments at The Center provide a map of the child’s strengths and challenges, and serve as a guide for our highly individualized, and developmentally-based programs. There should be clear link between the assessment results and our intervention goals, and The Center should be able to articulate the underlying rationale for the target areas selected for the child, and how these targets are connected to the child’s and family’s goals, values, and cultural orientations.
In addition to regular progress reports, periodic reassessment is important. Methods and strategies which are appropriate for a newly diagnosed three year old with delays in multiple areas may not be as relevant for a seven year old who is striving for greater independence.
Communication Builds Trust
The very best places to take children with autism will tell you exactly how quickly you will hear back from them with the information you need, what you will learn, and how they will help you address your concerns. For families from around New England, many of the autism centers in Boston have advantages of location for coordination with schools and other providers, as many of the staff and leadership live right here in the city.
A good quality centre for young children and their families has a good community or family focus. It is able to support children and families through transitions and maintain consistency between centres. A high quality centre for young children and their families is flexible and able to cater to individual families’ needs when it comes to communication. Some families may want a detailed written report each session, others may want a few minute phone call at the beginning or end of session to discuss specific aspects of their child’s session, while others may want to participate in a weekly meeting with all centre staff to discuss children’s programs and progress. The best centres would not expect families to change their reporting style to suit the centre but rather that the centre adapts to suit the family’s needs.
Clear, detailed and practical documentation should be a standard feature of all written communication from all practitioners (including teachers) to parents and/or other professionals, such as health workers, social workers etc. Vague reports of progress or lack of it and/or poor documentation of a child’s journey may highlight issues related to data collection and/or training.
The Decision Process
Don’t be fooled by the glitzy brochure and fancy campus when searching for an autism center. Look behind the scenes to the quality of programs and supports for individuals with autism spectrum disorders (ASD) and their families. Look for trained and qualified staff, effective and research-based methods, and parental involvement. If possible, observe a typical day at the program and speak with families of children who attend the program.
Most importantly, does the center provide evidence-based individualized center based intervention and support for the whole family unit in their journey for growth. Trust your instincts, do the staff truly understand your child’s needs and can work in partnership with you to support your child’s development.
After hours on the phone with centers, multiple campus visits, and hours pouring over applications, contracts and every other detail, Sarah finally found the right fit for her son after six months of search. Six months of time, energy and emotional investment to find a setting where her son can flourish and her family be supported and equipped to face whatever comes their way.
