Behaviors – Help! My Kid’s Behavior is Out of Control!
By Holly Bortfeld
“Autism“ is diagnosed by a set a behaviors so that means behaviors will be a part of your day. There are two camps to dealing with autism’s behavior – Dietary Intervention and Behavioral Therapy - some people choose only one, but we have found they work better together!
When my son was first diagnosed in 1998, the only books around all said “ABA” only, and lots of it. We did that for a few months, which wiped out all of our savings and retirement. ABA was very slow going for my severely affected child. It was as if he didn’t know the therapists were in the same room with him. Then we found out about “the diet” and decided to give it a try.
Happily, within 2 weeks, my son “woke up out of his fog”. It appeared that all the hours, and thousands of dollars, of ABA had been wasted. After starting the diet my son started flying through all his goals so fast that we were rewriting typical annual goals monthly. With good nutrition comes good health and good behavior. That’s our goal!
What is ABA/Behavioral Therapy?
Applied behavior analysis (ABA) is the process of systematically applying interventions based upon the principles of learning theory to improve socially significant behaviors to a meaningful degree (Baer, Wolf & Risley, 1968/1987; Sulzer-Azaroff & Mayer, 1991). Specifically, ABA refers to a systematic approach to the assessment and evaluation of behavior, and the application of interventions that alter behavior. A program binder is created specifically for each child which includes teaching procedures and data collection sheets for the child’s in-home program. ABA training is provided for therapy assistants and parents regarding teaching skills and behavior management. Ongoing program consultation is provided which includes recommendations and changes to in-home program based on child’s progress. Read more at http://rsaffran.tripod.com/aba.html
Ways to get ABA funded
There are a number of potential ways to get ABA for your child. For many families who live rurally (or outside the US), there is no easy option. We explore all the options below.
If your child is over age 3, he/she can go to public school, where the school must have access to a behavioralist. If the behavior is happening on school campus, you should ask the school to perform a Functional Behavioral Analysis (FBA) which means the behavioralist will observe your child more than once to see the behavior(s), take data and determine why the behavior is happening and set out a plan to stop the behavior. Make sure your IEP includes this new Behavior Intervention Plan (BIP) and that YOU, the parent, are listed in the training section so that you can be trained by the behavioralist and carry through the intervention at home and in the community to generalize the skill.
As a homeschooler, the typical “ask the school” answer probably won’t apply as the school can choose to provide this service or not, and only on campus. So if you wanted an FBA on something you are seeing at home, you are out of luck as they, obviously can’t see it in the classroom setting since he’s in a home school setting. However, there is no rule that says the district can't provide it, they just don't have to.
Under age 3
If your child is under age 3, he/she qualifies for Early Intervention (EI) and can see a behavioralist through their system. Contact your EI caseworker. http://www.nectac.org/contact/ptccoord.asp
Your private insurance policy may cover intervention. Many states have laws requiring some insurance policies to cover ABA. Check www.autismvotes.org for a list of states with coverage. Then you need to find out if your policy qualifies: http://tacanow.org/family-resources/what-is-erisa/
Read here for more information on insurance: http://tacanow.org/family-resources/insurance-coverage-on-a-budget/
Medcaid and/or Medicaid waiver (MedWaiver) programs can pay for behavioral therapies. http://tacanow.org/family-resources/autism-on-public-assistance-overview/
Every state has a department of disability services, but the name varies greatly. Find your state’s agency and contact them to find out what they can provide. http://www.nasddds.org/MemberAgencies/index.shtml
Regional Centers (California only)
California’s Regional Centers offer ABA to families who qualify. This state resource should provide early intervention and services up to age 22. http://www.dds.ca.gov/RC/RCList.cfm
This is your last resort, obviously. ABA can cost $40+ an hour by a certified practitioner and up to $120 an hour by a licensed practitioner. If you must do this, tape record every session to watch later and be in every session to learn how to follow through the program when the ABA therapist isn’t there. You are the only person with your child 24/7, so you need to know how to do this! It is important to pay attention and ask questions so parents and their support team can learn this therapy quickly without losing their life savings.
You can contact local Universities with autism programs or ABA certification programs, or even psychology programs to find college-age kids who can help. Serving as an intern, they are normally overseen by a professional CBA (Certified Behavioral Analyst) that you will pay for/provide. When my son was newly diagnosed, we had CBA paid for by EI and later Developmental Services for only 3 hours a week, but the rest of the hours were left up to us. We contacted the professors at the local University and asked them for interns looking to go into autism after they graduated. We paid $10 an hour and they were overseen and directed by the CBA, and the professor gave them credit towards their class so it was a win-win. Parents are encouraged to get references and obtain back ground checks or stay in the home while therapy occurs with their child.
Learning to do ABA yourself
Some parents get certified to do ABA, first for their own kids, but many become ABA therapists later for other families. There are many levels of training and you don’t HAVE to become certified, that’s up to you. You can take simple classes or more formal certification courses that can lead to a degree or certification.
- Behavioral Intervention for Young Children With Autism: A Manual for Parents and Professionals by Maurice, Green and Luce
- Functional Behavior Assessment for People With Autism: Making Sense of Seemingly Senseless Behavior by Beth Glasberg
- The Verbal Behavior Approach: How to Teach Children With Autism and Related Disorders by Barbera and Rasmussen
- No More Meltdowns: Positive Strategies for Managing and Preventing Out-Of-Control Behavior by Jed Baker
Special Needs Parenting classes
Before you go and get offended by the thought of someone suggesting you should take parenting classes, take a breath. If you are like most, when you were planning to have kids, you never factored in having a child with special needs, so you didn’t plan for it. That’s ok. But our kids do have needs that are special, and sometimes it can require US to learn new skills, that’s all. Many states offer Special Needs parenting classes. Google “special needs parenting class” and your area to find one. Also try Parent to Parent at http://www.p2pusa.org/p2pusa/SitePages/p2p-support.aspx
Who Pays for What?
Check out our guide “Who Pays for What?” to learn about services, coverage programs and who is SUPPOSED to pay for your child’s therapies, before you pay out of pocket.
Contact TACA to find out what services are available in your state
If TACA has a chapter in your state, email them. If not, join TACA-USA at http://health.groups.yahoo.com/group/taca-usa/ On TACA-USA, there are families from all 50 states (and many international families) who can help you with navigating services.
Apply for a Mentor
TACA offers free Mentor parents to help guide you to the resources you need to help your child. You can apply for a Mentor here: http://tacanow.org/about-taca/parent-mentor-program/
Dietary Intervention and Medical Treatments
Parents report that diet is the first, and most successful, treatment for behaviors. When children are sick or feeling poorly, they behave poorly. Medical and Dietary Interventions make them healthy and happy, resulting in feeling better, learning better and behaving better. ABA can’t “redirect” gut pain, allergies, migraines and sensory overload but Diet and Medical Treatments can!
What is “Dietary Intervention”?
Dietary Interventions for people with ASD is the removal of foods that ASD individuals cannot process properly, starting with all gluten, casein and soy. Any additional allergies a person may have would be removed as well. Removal of things like nitrates, MSG, preservatives, artificial colorings and sweeteners also produce a great effect in most.
- Article: In Defense of the GFCFSF Diet: http://tacanow.org/family-resources/in-defense-of-the-gfcfsf-diet-for-children-with-autism/
- Article: How to Begin the GFCF Diet: http://tacanow.org/family-resources/going-gfcfsf-in-10-weeks/
- Article: Schools and the GFCF Diet: http://tacanow.org/family-resources/an-essential-handout-for-teachers-aides/
- ARI’s Parent Ratings of Interventions http://www.autism.com/pdf/providers/ParentRatings2009.pdf
Notice that Dietary Interventions have consistently the least “negative reaction” rates of all treatments meaning there is no harm in trying!
Diet Cost Help
- GFCFSF Diet On A Budget: http://tacanow.org/family-resources/gfcfsf-diet-on-a-budget/
- GFCFSF Diet On Food Stamps! : http://tacanow.org/family-resources/gfcfsf-diet-on-food-stamps/ Yes, you can! We did the diet for an entire family of four, three meals a day for under $320 a month!
Many food programs exist in the USA and most can fit the diet! http://tacanow.org/family-resources/autism-on-public-assistance/
Schools must provide meals that fit your child’s dietary restrictions at the same price you would pay for a regular meal. If you get free, or reduced-price meals, your child would still get the diet meals for the same price you are currently paying. http://tacanow.org/family-resources/must-schools-provide-casein-and-gluten-free-foods/
You can write off many diet cost on your taxes. http://tacanow.org/family-resources/tax-strategies-for-parents-of-kids-with-special-needs/
What is Medical Treatment?
Medical Treatment is merely the treatment of the comorbid conditions that people with autism have. Those can be gastrointestinal disease, allergies, immune, metabolic, mitochondrial and detoxification pathway dysfunction, just to name a few. These conditions may cause or exacerbate the symptoms we see in the autism diagnosis. Treatment of these issues often reduces the symptoms of “autism”. The testing for, and treatment of, these medical conditions is called “Medical Treatment” for people with ASD. It is not to be confused with pharmaceutical sedation which does not treat the underlying conditions that cause the behaviors.
- A very readable primer for Medical Treatments for Beginners: http://www.autism.com/pdf/providers/adams_biomed_summary.pdf
- Did you know that your private Health Insurance will cover most autism treatments? Health Insurance coverage for Autism Treatment: http://tacanow.org/family-resources/insurance-coverage-on-a-budget/
- 10 Great Ways to save on Medical Treatments, Medical Treatment on a Budget: http://tacanow.org/family-resources/biomedical-treatment-on-a-budget/
- What’s the path to treatment look like? TACA’s Autism Journey Blueprints: http://tacanow.org/family-resources/autism-journey-blueprints-guide/
Age is just a number
It doesn’t matter whether your child is 2 or 22. Diet and Medical Treatment work, regardless of age!
- Teens with ASD: How to Start the GFCFSF Diet with an Older Child: http://tacanow.org/family-resources/teens-with-asd-gfcfsf-diet/
- Teens with ASD: Medical Treatment with an Older Child: http://tacanow.org/family-resources/teens-with-asd-biomed-older-child/
It is the goal of every parent to have every minute in therapy be as effective as possible. Treating children medically unique to their needs, addressing food sensitivities and allergies can be a positive step in that direction.