CHOOSING THE RIGHT TREATMENT

You want to do everything possible to help your child. Many parents in your position are eager to try new treatments, even if they’ve not been proven to be effective. Your hopes for your child may make you willing to try untested treatments.

Just as each child with autism is different, so is each child’s response to treatments.

It may be helpful to collect information about a therapy that you are interested in trying. Speak with your child’s health care provider, as well as your intervention team members, in order to discuss the potential risks/benefits and establish measurable outcomes and baseline data. Parents of older children with autism can provide you with a history of therapies and biomedical interventions they have tried. This may include some that have been promised to be “cures” for autism over the years. Some of them may have been helpful to a small number of children. Upon rigorous scientific study, it has become clear that none of these “cure” claims are valid. In fact, some unproven methods have been found to be harmful for many, so it is very important to discuss all these ideas with your child’s health care provider before trying them.

Look for scientifically valid evidence, meaning published research studies, behind treatments you are interested in. If you conduct your own research, make sure your sources are established and reliable, such as websites that end in .gov, .edu or .org. If you want to consider a specific intervention or treatment, find out if there is scientific evidence to back it up.

Choosing a treatment for your child may feel overwhelming. Work closely with your child’s health care provider and other professionals involved in their treatment to explore all the options. Your child’s path likely will look different from the path of other autistic children you may know. Focus on finding the services and supports that are right for your child and your family.


Understanding your child's learning style

From Does My Child Have Autism? A Parent’s Guide to Early Detection and Intervention in Autism Spectrum Disorders by Wendy L. Stone, Ph.D., with Theresa Foy DiGeronimo, M.Ed., 2006.


Finding the right intervention program begins with an understanding of your child’s learning style – which is quite different from the learning style of other children. You probably realize this as you’ve tried to get your child with autism to wave bye-bye using the same teaching strategies you used with your other children – that is, demonstrating the action, providing a verbal prompt by saying “wave bye-bye” and even moving his or her hand to demonstrate what to do. But when that approach didn’t seem to be working, you probably started to think that your child was being stubborn or uncooperative. After all, you’re teaching simple skills using methods that worked very well for your other children.

But the reality is that your child isn’t being bad; he or she just has a different learning style from your other children. This difference in learning styles isn’t apparent only when you try to teach children with autism; it’s also evident in the way they learn (or don’t learn) on their own. There are lots of things that children without autism seem to learn effortlessly, without being taught, but that children with autism don’t pick up on as easily.

For example, young children without autism somehow learn, without explicit teaching, how to use a pointing gesture to let you know what they want or to indicate where they want you to look. They learn to follow your point or eye gaze to figure out what you’re looking at or what you’re interested in. They figure out on their own how to use eye contact and facial expressions to convey their feelings-as well as to understand the meaning of your facial expressions and tone of voice. Social-communicative behaviors and skills like these just don’t come as naturally to young children with autism and often need to be taught explicitly.

While autism is typically a life-long condition, children and adults benefit from treatments that help reduce symptoms and increase skills and abilities. Although it is best to begin treatment as soon as possible, its benefits can continue throughout life. The long-term outcome for a child with autism varies. A small percentage of children might lose their diagnosis over time. Others remain severely affected. Many have typical learning and thinking skills but challenges with social and language skills. Most develop speech and learn to communicate with others. Early intervention can make huge differences in your child’s development. How your child functions now may be very different than later in life.

Evaluating early interventions

by Lauren Elder, Ph.D.

Once their children begin receiving early intervention for autism, many parents wonder how to evaluate these services. I frequently get questions such as, “How do I know whether the intervention is right for my child? How do I know if my child is making as much progress as possible?”

It can be difficult to say how much progress any one child “should” be making. Keep in mind that all children learn at different rates, and children may go through periods of time when they are learning more slowly or quickly. What’s most important is that your child is learning, and that you can see new skills developing over time.

That said, it’s important to trust your instinct if your concerns persist. In my experience, parents are usually right when they say their child could be making more progress!

To help ensure that your child is receiving the highest quality treatment, I suggest posing these questions:

What research supports this intervention? Programs and techniques should have the backing of scientific studies demonstrating clear benefits. Ask for references to published studies on the method the program uses.

What training has the staff received? The intervention providers should be happy to describe their training and educational background. If the team includes paraprofessionals (individuals without advanced degrees), inquire about the team leader’s training and how closely he or she supervises all those working with your child.

What are the intervention's goals - both in general and with my child in particular? Your child’s providers should clearly describe the skill areas that the intervention addresses, as well as their specific goals for your child.

How is the intervention individualized for my child? The providers should describe clearly how the intervention builds on your child’s personal strengths and motivations.

How do you assess my child's progress? Providers should regularly collect information on your child’s progress and challenges. And they should regularly use this information to adapt the program to your child’s needs to ensure continued progress. These regular reviews should include at least one standardized developmental assessment - a test performed by a qualified professional - of your child’s skills.

How will we work together as a team? Children do better when their parents actively participate in their treatment. You know your child best. Use this knowledge to help the intervention team understand how your child learns. Also ask to be trained in the program’s intervention strategies. In this way, you can apply them at home to maximize your child’s learning. As part of the team, you should also expect regular updates on the program and your child’s progress.

What to do if your child is not making progress:

Typically children need time to adjust to new intervention programs. So, allow your child to settle in before evaluating progress. If you still don’t see that progress – or don’t think your child is making as much progress as possible – consider the following:

What’s the team’s opinion? As they get to know your child, the members of the intervention team can help you determine whether he or she could be learning more. Ask them for ideas about adjusting your child’s program to maximize progress. There may even be more than one model of early intervention offered in your area.

Is my child healthy? Several medical problems such as sleep difficulties and seizures are relatively common among those with autism. Clearly, they can interfere with learning. If you are concerned about possible medical issues, consult your child’s doctor and ask for evaluations that can help identify underlying conditions so they can be treated. Autism Speaks Autism Treatment Network (ATN) is dedicated to this “whole-child” approach to treating autism and related medical issues.

How do I get services started for my child?

Before EI or special education services can be provided, your child will need other assessments and evaluations. These may include:

If your child is younger than 3, call your local EI agency. In most states, the Department of Health provides EI services.

If your child is 3 or older, contact your school district’s special education office. You may need to request an evaluation for your child in writing.

The purpose of these evaluations is to understand your child’s challenges to determine appropriate services. A Parent’s Guide to Assessment from the Organization for Autism Research can be helpful in explaining results and what they mean for your child.

Waiting for all of these evaluations may be frustrating. There may be waiting lists, so start the process as soon as possible. These evaluations provide more in-depth information about your child’s symptoms, strengths and needs.

They will be helpful in accessing and planning services for your child. You can do a lot while you wait for results, including:

  • Talk to other parents about what services have been helpful for their children.
  • Investigate the therapies outlined in this kit and on the Autism Speaks website.
  • Learn about how you can support your child by reading books, blogs and other resources online.
  • You may want to check out books or blogs written by autistic people to hear their experiences.

Autism and insurance

While effective therapies for autism exist, these services are not consistently covered by health insurance. The time and energy often needed to ensure that prescribed services and supports are covered can complicate what may already be a stressful time for your family.

Since 2007, Autism Speaks has focused on improving health insurance coverage for medically necessary treatments such as applied behavior analysis (ABA). As of August 2019, all 50 states require meaningful coverage for autism therapies, including ABA, under state-regulated health insurance plans. Unfortunately, not all plans have to comply with state mandates. And many mandates exclude certain plan types or impose caps that may affect your coverage.

Your type of health insurance plan impacts how you advocate for a change in benefits, as well as how you appeal denials of coverage and to whom you file complaints if you are not satisfied with implementation of benefits. For example, if you are covered by a self-funded or employer-based plan, you would advocate at the level of your employer, while under a fully insured plan, such as Medicaid, it is usually necessary to advocate for change through state law or regulation.

Find out about what your health insurance covers and how best to advocate for autism benefits. If you don’t already know what type of health insurance you have, visit our Health Benefits Guide. Click on the link to your plan type to find online resources that can help you find out what your plan covers for autism treatments and therapies.

This can be found at autismspeaks.org/health-insurance-coverage-autism.