Parents of children on the autism spectrum strive to do everything within their power to instill their loved ones with the skills they need to flourish in an uncertain future. Fortunately, as parents, you are the ones who are best equipped to do so since you know your child better than anyone. This knowledge will come in handy when it comes to your child’s treatment. Treatments for autism spectrum disorders do not occur solely in clinical settings. Parents must be an active participant in their child’s therapy if they want to greatly increase their child's chances of hitting those developmental milestones. Research has shown that, when provided the proper training, parents can have an overwhelmingly positive effect on their child’s treatment.1-2 Although, every treatment program is unique, because every child on the autism spectrum is unique, they seem to share a common thread of enlisting parents to participate during the process. Regardless of the avenue of therapy your family decides to pursue, competent providers will encourage parent participation as a great influence for promoting behavioral changes. A child on the spectrum may have a half dozen professionals on a healthcare team working to develop a treatment plan designed to address the child’s specific needs, but your role of parent is of even greater importance.
Where to Start?
Clearly, to provide effective treatments outside of the guise of a clinician you must familiarize yourself with the treatment as much as possible. Any treatment that doesn't welcome or encourage parent participation should be viewed as suspect. Consistent with all aspects of early intervention in autism, you are going to want to begin exploring treatments as soon as possible. It would be wise to begin this process even before your child receives an official diagnosis, so that you are able to begin interviewing potential treatment providers immediately. National Autism Network is a great resource for initiating the treatment process. Our site has a number of resources for parents to investigate potential treatments from our treatment synopses of Applied Behavior Analysis and its Related Approaches to our recorded Webinars given by industry experts. Once you familiarize yourself with the virtual encyclopedia of treatments available to your child, you can utilize the Provider Directory to locate therapy providers in your area. After treatment begins, NAN members can maintain contact with their healthcare team, share documents, progress reports, and updates, connect with family members and friends, and control every aspect of what certain professionals and others see regarding your child’s treatment by utilizing our HIPAA-Secure Social Network. The National Autism Network strives to be the most comprehensive resource for the autism community and should prove be an invaluable resource for your child’s autism treatment.
Treatment Guidelines: Before and After Treatment selection.
Overall, children whose parents participate in their treatment have a better chance of achieving developmental growth. A 2006 survey found that parent training during early intervention was deemed the most effective practice for contributing to their child’s progress.3 Sadly, the same survey also found that only 21% of respondents received parent training, despite family involvement being encouraged.3 Aside from the aforementioned reading and conducting your own research, there are additional steps parents can take to ensure they’re child is receiving treatment best suited for him/her:4
Seek Out Advice:
You are not the first person faced with this daunting challenge. Seek out the advice of other parents on the autism spectrum either within your social circle or online in our online Forums. Explore what treatments work best for your child, the potential drawbacks and side effects of particular treatments, and don’t ever stop asking questions and seeking out answers until you are completely satisfied.4 Be specific with your questions and be sure to inquire about your role as a parent within the treatment.
Evaluate Costs
Unfortunately, a family’s financial situation can play a big role in the type of treatments a child on the spectrum receives. The cost of consultations, doctor visits, prescriptions, and the treatment itself can be seemingly astronomical. Supplemental treatment techniques like Video Modeling can help offset these costs by helping children learn behaviors at home. By getting treatment now and increasing the likelihood of adult independence you are providing each you and your child with more financially sound futures.
Document Everything
Documentation from parents is critical for any intervention. Clinicians must have baseline data from the child’s complete history collected from parents to create an accurate assessment of the child’s strengths and weaknesses. Parents may be asked to fill out daily checklists or journals detailing progress or regression of certain skills, meltdowns, and detail the occurrence and duration of certain behaviors. These notes will allow you to become an irreplaceable member of your child’s treatment team. You should consider an alternative treatment provider if they do not ask for your initial input when creating a baseline assessment for treatment or assure you that your participation is not necessary.
You may want to also consider how technology can play a role in your child’s development. Newly developed programs like Identifor help you identify your child’s special talents. There are also a number of apps available for your Children for practicing certain exercises outside of the home and for Parents and Treatment Providers to collect and share pertinent data. .
Examples of Parent Participation
As mentioned before, quality autism interventions are going to require some form of parent involvement to ensure the treatment has the best possible chance for success. The hours spent in a clinical setting undergoing therapy are critical for a child’s development, but they only account for a fraction of the time that they spend in their natural setting with you and your family. This affords you the opportunity as parents to continue to implement the principles of the treatment in the home, after receiving proper instruction and training. Below is a list of specific treatments paired with what is to be expected of the parents:
Applied Behavior Analysis: Applied Behavior Analysis is considered the gold-standard in autism treatment. Although ABA therapy is overseen out by a Board Certified Behavior Analyst (BCBA), who must undergo years of education and field experience, there are a number of ways parents can participate in treatment. A strong ABA program should include family training workshops to teach and reinforce skills.6 Parents may be asked to collect data, review videos of sessions, and record and report behaviors as a part of treatment. You can also provide valuable insights to your child’s progress to their therapy team. Some ABA providers will conduct one-on-one in-home sessions that can serve as ABA training for parents as well as therapy for the child. Without parent involvement, children may have more difficulty learning and maintaining skills, and are at a greater risk of displaying regression of previously mastered skills.8 Parents can educate themselves on the ins and outs of the treatment by purchasing an ABA Training & Curriculum for Parents from Maximum Potential Kids. A 3-Month Plan gives users access to 17 modules and supplemental materials. The package includes full training information, a Data Collect Package to for data collection, tracking progress, and conducting analyses, and Digital Picture Cards. ABA treatment can be expensive, but is covered in the majority of states. However, states have varying levels of cutoffs for coverage based upon age, number of visits, and annual dollar caps.
DIR/Floortime: This autism intervention is predicated on the belief that a child’s interests and desires can serve as powerful motivators to help them climb the developmental ladder.2 The program literally involves getting down onto the floor to interact in play sessions that are initiated by your child.9 This child-centered approach mandates that parents actively participate in the treatment by engaging their child on their level for multiple hours a week. The DIR/Floortime model incorporates speech, occupational, and physical therapy, education programs, and training/counseling for parents in an intensive home program.9 Parents interested in Floortime can receive training, attend workshops, or purchase online videos from The Greenspan Floortime Approach organization, named for a developer of Floortime, Dr. Stanley Greenspan. Other helpful resources include Interdisciplinary Council on Developmental and Learning Disorders and the Profectum Foundation.
Occupational Therapy: This intervention works to prepare your child for everyday life activities, such as daily living activities (eating, dressing oneself), education, work, leisure, and social life. Like other accepted autism interventions, occupational therapy begins with an assessment and the collection of baseline data, in which you will play a significant role by providing information and helping to set treatment goals. Once enrolled in OT, a therapist can conduct a home evaluation to make recommendations for adaptive strategies and demonstrate the function of certain adaptive equipment.10 Adaptive equipment can be implemented in nearly every room in the house and includes things like indoor swings, trampolines, and even ball pits to improve sensory function and fine motor skills. A critical benefit to occupational therapy is it’s covered under habilitative services under Obamacare, regardless of where you reside.
Speech/Language Therapy: Children with communication difficulties will attend sessions with a speech/language pathologist (SLP) to address their weaknesses. Since children learn to communicate during everyday activities and conversations, it only makes sense that parents would be an essential part of the treatment process.12 Research has shown that communication improves when parents interact more with their child, respond to their child’s attempts at communication, emphasize important words in a sentence, and expand on what the child is said.12 Parents will not only play an active role in the collection of baseline data and the development of treatment goals, but can participate in home activities with the child as well. A qualified SLP provides activities for children and parents to complete as well as provide and educate parents about specific assistive technology that is often used in therapy. Consistent with occupational therapy, SLP services are covered under Obamacare.
These are only a couple of the treatments available to children on the autism spectrum. Keep in mind that all quality behavioral interventions for children with autism will insist that you participate as parents in some form or another.
Conclusion
By now we hope to have instilled in you the importance of parent participation with regards to your child’s autism treatment. Being a facilitator for your child’s intervention outside of clinical settings is the best thing you can do to ensure a brighter future for your child, aside from enrolling them in therapy in the first place. There is little else stronger than the paternal bond with a child, which is precisely why you are so essential to the treatment process. Although the treatment process can seem frustratingly long and tiresome at times, the ends of a more independent future for your child justify the means.
We ask our members to comment below with any at-home therapy tips for other parents of children on the spectrum.
References:
1. Heasley, Shaun. “Parent Training Shows Promise for Kids with Autism.” Autism Daily Newscast. October 10, 2014. Accessed December, 18 2014. http://www.disabilit...g-autism/19746/.
2. Padawer, Ruth. “The Kids Who Beat Autism.” New York Times, July 1, 2014. Accessed December 18, 2014. http://www.nytimes.c...utism.html?_r=2.
3. Bellini, S., Hume, K., & Pratt, C.(2006). Early intervention for young children on the autism spectrum: Parent’s perspective. The Reporter, 11(2), 1-4, 18. Accessed December 18, 2014. http://www.iidc.indi...edu/?pageId=407.
4. Ackerman, Lisa. “The Parent’s Role in Biomedical Treatment for Autism Spectrum Disorders.” Autism Advocate, no. 5 (2006): 52-54. Accessed December 18, 2014. http://www.2d-hostin...l-Treatment.pdf.
5. Bennet, Jillian. “Applied Behavioral Analysis Services for Children with Autism: An Individuals, Developmental Approach.” Massachusetts Applied Behavior Analysis Center (MABAC). Accessed December 18, 2014. http://www.bostonneu...ch.com/aba.html.
6. “Applied Behavior Analysis: A Parent’s Guide.” Autism Speaks, Inc. May 2012. Accessed December 18, 2014. http://www.autismspe...or_analysis.pdf.
7. “Parent Coaching and Support.” Trumpet Behavior Health. Accessed December 18, 2014. http://www.tbh.com/p...ng-and-support/.
8. “What is the Role of the Parent in ABA Therapy?” Positive Reinforcement ABA Therapy Inc. Accessed December 18, 2014. http://www.prabather...parent-role.php.
9. Greenspan, Stanley J. “Floortime: What It Really Is, and What It Isn’t.” Interdisciplinary Council on Developmental and Learning Disorders. Accessed December 18, 2014. https://drive.google...jEwNjc3ZTgyMjdm.
10. “Patients & Clients.” The American Occupational Therapy Association, Inc. Accessed December 18, 2014. http://www.aota.org/...ts-Clients.aspx.
11. “10 Health Care Benefits Covered in the Health Insurance Marketplace.” HealthCare.gov. August 22, 2013. Accessed December 18, 2014. https://www.healthca...ce-marketplace/.
12. Lowry, Lauren. “Parents as “Speech Therapists”: What a New Study Shows.” The Hanen Centre®. 2011. Accessed December 18, 2014. http://www.hanen.org...ew-Study-S.aspx.