Keeping It Together When Faced With an Autism Diagnosis

As seen on Autism Spectrum News Summer 2016 Edition (page 25) >

Your child has been diagnosed with Autism… now what?
Many parents feel as though they are finally able to answer some of the questions they have had regarding their child, but still feel confused, overwhelmed, and frightened about what to do next. Parents are their child’s best advocate and have the right to be fully informed of what the appropriate next steps are.

Next steps can be confusing and overwhelming when presented with a variety of approaches that have been found useful in treating individuals with an autism diagnosis. Parents may be faced with various recommendations, such as ABA therapy, speech therapy, feeding specialists, neurologists, etc. However, being unfamiliar with these areas of treatment, where they are located, and who should provide each service, can be daunting to a family with a newly diagnosed child. It is common for families to be given a list (aka “the list”) of resources that they can independently reach out to. However, scheduling the appropriate evaluations can be time consuming, intimidating, and, sometimes, defeating. In addition to seeking out and understanding treatment, medical insurance is a key factor in this equation. This is a significant consideration when attempting to get treatment services for your child or family member.

Upon receiving “the list,” how does one go about identifying appropriate service providers who are ethical, effective, and within a reasonable proximity to their home? Often times, parents share they will “Google” treatment providers, seek out feedback from other parents, or use various online “medical” resources that can be found on the internet. We advise our families and families reading this article to reach out to resources, which can provide information that is both ethically sound and legally correct. In the state of New Jersey, for example, we often utilize the following parent advocacy groups SPAN (Statewide Parent Advocacy Network – http://www.spanadvocacy.org), FACES 4 Autism (http://faces4autism.org), a support network for families with autism, Autism New Jersey, and Autism Speaks. Each of these resources have clinicians, volunteers, and team members who are well versed in the diagnosis of Autism and who can assist in the process of attaining ethical and effective treatment.

Sometimes, having a diagnosis and knowing where to seek out ethical and effective treatment can bring relief. Along with relief, diagnosis coupled with where to attain treatment can bring awareness to matters that were questionable. A diagnosis can lead parents to an appropriate treatment plan. This treatment plan may begin as young birth through the 3 months and continue on through the school age years.
The act known as IDEA (Individuals with Disabilities Education Act) was initially developed in 1975 to ensure free and appropriate education for children with disabilities and is federal law. The act was revised in 2006 to include Part B covering school-aged children through adults up to age 22 years. IDEA was revised a second time in 2011 to include Part C covering infants and toddlers through three years of age.

In short, IDEA, Part B provides parents with their rights as the parent of a child with special needs to be informed of and included in the evaluation of their child, academic placement of their child, and meetings regarding their child’s progress and development. Part B indicates parental consent is required in order for services to be offered, maintained, or stopped. IDEA, Part C states families of children with developmental disabilities are entitled to an evaluation to determine eligibility for an individualized family support plan (IFSP) as well as early intervention services that include a variety of developmental goals for their child including but not limited to communication, fine/gross motor, and self help. Additional information on IDEA may found at http://idea.ed.gov

Outside of IDEA families may require private services in the form of ABA therapy, speech therapy, physical therapy, or occupational therapy where insurance may or may not be utilized or the treatment may fall under the category of a “non-covered service”. Related services for individuals with an autism diagnosis are often conducted on a weekly basis. In turn from week to week families may be facing high co-pays, high deductibles, or costly self-pay fee schedules. Parents are often paying hundreds, even thousands of dollars, for services with providers whom they trust or to wait for appointments through their in-network provider, which may have providers that are not as experienced or have the rapport with the child. It is not uncommon for families to share with us they have experienced sleepless nights worrying about receiving appropriate and effective treatment and covering the cost of these therapies.

Families should contact their health insurance companies and speak with a representative knowledgeable about their particular plan, as well as the services the insurance offers for the specific diagnosis. Families are also encouraged to reach out to the billing department in the organization where their child is receiving treatment, as these individuals may have contacts within the designated insurance company who can efficiently assist with the process. Families can also independently contact board certified clinicians at the BACB (Behavior Analysis Certification Board) via the board ] website www.BACB.com. The site lists credentialed clinicians, their contact information, and their location. Families can search by clinician name, zip code, state, or country and inquire as to what costs for ABA therapy are, as well as, if they are covered by insurance.

Once a provider is located, families are encouraged to ask the clinician/team about his/her experience, as not all individuals credentialed in ABA or other related services have the same experience or specialties. Parents are encouraged to convey concerns to the therapist and be an active member of the child’s treatment team.

The writers of this article are Board Certified Behavior Analysts and would like to dedicate this section to helping parents know what to look for in order to create a successful ABA therapy environment. Parents please be sure the following are including in your child’s ABA therapy program:
• A positive rapport between your child, you, and their therapist.
• Time for “work” and time for “play.” Discrete trials should not make up the entire child’s programming. Children with autism require so much more, such as development of appropriate leisure skills, appropriately playing and interacting with family members, and successfully completing community outings.
• Observation of your child’s sessions with the therapist. This is an opportunity to see how your child interacts with the therapist and an opportunity for you to observe the therapist in order to generalize these skills across settings.
• Organized program goals, data collection to document goals, plans, behavior information, etc.
• Regular meetings (monthly, bi-monthly) with the therapist to review analyzed data and gain an understanding of what that data means for treatment and program implementation.

When a family is given a diagnosis of autism or other developmental delay, the individual(s) with the diagnosis often requires an abundance of care and attention.
This can leave little time to spend with other family members such as other children or significant others. Parents often wonder where they will find the time and patience for others. The ability to be flexible is a valuable skill. This means one parent must be prepared to leave an event while the other stays with the rest of the family, setting aside specific days and times to spend with other children in the family, setting aside time for yourself, designating time for you and your significant other, and being proactive to prevent maladaptive behavior from occurring.

Parents also shared having family and friends close by can be a great resource. One parent expressed, “If you’re lucky enough to have family close by, ask for help.” Having a family member come over might allow you to get your household in order, run errands, or even socialize with your spouse or friends. If other family members do not reside locally, ask a friend or neighbor. Accepting the help and not making additional work for yourself is also important. For instance, do not clean up your house just because you asked a neighbor to watch the children while you run to the food store; run to the food store because the house will still be standing when you return home.

Parents also expressed significant concern for their children with special needs for when their children become adults there is no longer a guardian to care for them. Some of the parents we spoke with in preparing for this article are parents of non-verbal children or parents of children with limited cognitive abilities. Parents expressed fears of their child being taken advantage of, getting hurt, or simply not having their day-to-day needs met properly in way that maintains their integrity. Preparation for the future was emphasized. Parents shared while it is “unsettling” and “scary” to think about, preparations such as guardianship and wills should be prepared even when the child is young. This is one way to assist in ensuring your child’s needs can be met to the best of your ability when you as the parent are no longer here to meet them.

This article has discussed quite a bit about therapies and services for individuals with Autism or other developmental disabilities. However, we also want to emphasize the importance of allowing time for yourself and your family outside of therapies. It is easy to get caught up in and focus solely on your child receiving as many therapeutic services as possible. Receiving appropriate and good quality services regularly is important. That said, it is important to maintain balance and understand quality of life for all family members is equally as important.

References
Celiberti, D., Buchanan, S., Bleecker, F., Kreiss, D., & Rosenfeld, D.(2004). The Road less traveled: Charting a Clear Course for Autism Treatment. Autism Basic Information. COSAC, New Jersey.

Fry William, B. & Lee Williams, R. (2011). Effective Programs for Treating Autism Spectrum Disorder: Applied Behavior Analysis Models. Routledge, NY.

Maurice, C., Green, G., & Fox, R.M. (2001). Making a Difference. Behavioral Intervention for Autism. Pro-Ed, Austin, Texas.