How can families choose the right autism therapy support?

I was speaking with a friend of mine and her son is 4 years old and needs some sort of therapy. She spent 3 months on a wait list for Applied Behavior Analysis, and she spent as much time filling out all of the paperwork to get her child into ABA as she spent trying to buy a house and it wasn’t even close to as productive. Now she’s stuck deciding if what she did was even good for her child. She wants the best for her kid and is finding that the system is like finding the right door in a long line of doors. Except in this case more and more doors are being added all the time.

This is more common than you might expect in the world of child therapy.

Start with the wrong question and you’ll get the wrong answer

Most families begin by inquiring into the various types of therapies for their child with autism. However, this is the wrong place to begin. The first step in any good therapy is to establish a clear understanding of a child’s and his or her family’s daily life and to set a goal or goals for change. There are many approaches to working with children with autism. All of them are a living relationship between a child and his or her family and his or her clinical team.

At the heart of the ABA world is a large array of practices that have been researched to support children with autism. The practices have been researched to ensure that they increase behaviors that are considered to help a child with autism to reach their full potential. Much of the research on these practices has been completed by psychologists and other researchers. Many of the practices have been researched in such a way that they have been deemed to be applied in nature. Therefore, the term ABA has been commonly used to refer to the practices that have been researched to support children with a wide array of needs. In terms of finding the right program for your child, it is helpful to first note that there are many programs that offer a wide array of services that are supported by research to help children with a variety of needs. A first step is to find a program that appears to offer a number of services that may be able to help your child. Next, it is very important to try to determine if the way a particular center or individual therapist practices ABA is a good match for you and your child. In other words, finding a program that appears to offer a number of good services is not enough. In addition to finding a program that appears to offer a number of good services for your child, it is also very important to try to find a center or individual therapist who practices in a manner that you feel respects your child’s rights and needs. In addition, it is very important to try to find a center or individual therapist who you feel is able to work well with you.

Child-Centered Care

So why does Child-Centered Care not exist in practice?

While many providers of ABA claim to offer “child-centered” treatment, child-centered is not a method or approach to treatment that is commonly used by most providers of ABA. This is not to say that a child-centered approach to treatment cannot be used within ABA, but rather that it is not typically used.

As has already been stated, Child-centered care focuses on the child’s preferences, strengths and comfort in the treatment environment. Child-centered care looks at the child’s assets rather than limitations. The focus of child-centered interactions in a child-centered treatment setting are the child’s feelings, needs and interactions with the therapist. This type of setting allows the child to develop trust in the therapist as support. They learn to interact and work with the therapist as a partner. A child-centered play setting would allow children to express their choices and work in their own developmental direction with chosen toys and activities.

Some questions worth asking a prospective provider:

• How do you handle it when a child is having a hard day? Do you pause, adapt, or continue?
• How often will we (the parents) be involved in reviewing goals?
• Can you show me examples of how goals have changed based on a child’s progress or feedback?
• What does a typical session look like for a child my son or daughter’s age?

So what to do with your new-found savvy and insight to the intricacies of the system? Your best approach is to ask lots of questions (especially of potential providers), most of which should revolve around the specifics of your child’s situation, with the following being some general starting points.

Setting therapy goals that actually mean something

As for your second question, I’ve included a few examples below of specific goals that may be of use to you and your child as opposed to more general goals (such as “social communication” or “play”). The type of goal that a therapist finds most useful are specific, measurable and time limited – for example, a child with Autism might have a goal of “initiating a play request with a peer at least once during a 30-minute play session.” This type of goal would be very useful for a therapist as it could serve as a guideline for a session with the child.

Ineffective goals for a child’s therapy are generally abstract and fail to relate to a family’s daily life. For instance, instead of stating that the goal of a child’s therapy is to “to improve social communication”, a more effective therapy goal for a child with Autism would be to state that the child will “initiate a play request with a peer at least once during a 30-minute play session”. This type of goal is trackable for a child with Autism, it can be celebrated with the child for achieving, and it can be built upon for future sessions of therapy with a child with Autism. The best teams of clinicians derive the majority of a child’s and family’s therapy goals from daily life. For example, a clinician could derive a child’s and family’s therapy goals from a variety of sources including: events that occur at the breakfast table, events that occur on the school bus, and/or a meltdown that occurs at home due to a slight change in a child’s morning’s routine. These types of moments are valuable pieces of information for a child’s and family’s good in therapy. An effective clinician understands that these are the types of moments that bring a child and family into a therapist’s office.

(For the “What to Ask Your Provider” list, it’s a good idea to print out the whole table and bring it with you to your first meeting with a provider. Pay close attention to how the provider answers the “why it matters” column for each question.)

Communication

You are not just a passive observer of your child’s treatment. You are the most important variable in the treatment of your child. So, it is essential that you are as informed as possible of the goals and strategies of the treatment and that you have ways of reinforcing what is going on in the sessions. This can be as simple as asking your child about their day or bringing up topics that have been dealt with in sessions. In fact, studies have found that parents who are most informed and most involved in the treatment of their children are the ones for whom children make the most progress and for whom that progress is most sustained.

Ask for parent training. Have your child’s therapy summarized for you after every assessment. The provider should be able to explain to you in simple language what is going on with your child, what your child is doing, and how the provider is going to help your child. If a provider uses a lot of clinical jargon in talking with you and your child, do not expect this to change in a few months. Find a provider who speaks your language.

Boston families searching for aba therapy Boston need to find a program that focuses on parent coaching in addition to providing the highest quality of ABA to their child. The best aba therapy programs are programs that include parent coaching as part of the main focus of treatment.

What Does Your Instinct Say?

Unfortunately, the field of ABA has not yet gotten to the point where it is willing to explicitly acknowledge and address the uncertainty that is so clearly present when trying to make decisions about the best life path for a child with autism. However, I really wish I had more to offer on this front. A simple checklist or scoring rubric would be nice. An algorithm or decision tree to decide on the best course of action would be fabulous.

There is much grey area when it comes to choosing the right Autism program for your child. This is not an area where there is a great deal of certainty and while there are things that you can look at in terms of deciding on a program, in the end you have to go with your gut feeling as to whether or not the staff see your child for who they are, and are able to help your child and you to develop the skills that your child needs in order to reach their full potential. Remember, your child has Autism, but they are also a unique individual with their own strengths and weaknesses and their own way of viewing the world. A good program will take into account your child’s unique perspective, including their sense of humor, their fears, their fixations, their rituals, and more. While funding authorization is an important thing to consider, it should not be the only thing that you are looking at when choosing a program. The best way to choose a program is to trust your instincts, and know your child better than anyone, including any clinician or therapist. Look for a program that will see your child for who they are, with all of their strengths and weaknesses, and will develop a treatment plan that will help your child to grow and succeed in all areas of life.

Trust your instinct about whether the people in the room can see your child. It is far more than their credentials. It is far more than a brochure and intake packet.