Barriers to Autism Parent Engagement in their Child’s Behavioral Intervention
A primary theme of the recent 2013 ABAI Autism Conference in Portland OR was active parental participation in their children’s learning and overcoming autism symptoms. One day of the meeting was devoted to workshops by Marjorie Charlop and Meme Heineman, on this topic. A terrific parent panel discussion including Kammy Kramer (parent MN), Sabrina Freeman (parent, WA), Wayne Fisher (professional NE) and Bob Ross (parent professional MA), explored some of the challenges parents face. These presentations will be available within the next month on DVDs and can be used for CEs at the ABAI Learning Center
Parents appreciate the assistance their child is receiving from enthusiastic, dedicated therapists. They are often very grateful and feel warmly toward their therapy team. But several deterrents make it difficult to translate this appreciation into active engagement, for some parents. After considering the following countervailing forces, you might conclude it is surprising parents become as supportively engaged as they do.
1. Parents are Suffering: In the beginning, the last thing parents want to be told is that they need to get going on providing early intensive behavioral intervention for their child. They are valiantly trying to accept, and adjust to the idea their child has a life-long disability. They are grasping at straws, trying to find a specialist who will tell them that the autism diagnosis is incorrect, or even if it is true, there is some sure-fire way\to fix it with some kryptonite magic substance that will zap the condition out of existence. There isn't, but nearly every parent searches for one, nonetheless. Being told they can look forward to devoting 15 to 30 hours per week of intervention for the next few years, and that even after that intensive treatment, s/he is likely to have residual signs and symptoms of autism, isn’t remotely on their radar.
2. Family Doubts He Has Autism: Grandma, who used to work as a nurse in a surgeon’s office, says she doubts Billy has autism. She had no specific training in children’s disorders, but she was a nurse after all, and understands a lot about medicine. She thinks Billy is just spoiled and if her daughter would just put her foot down, Billy’s problems would vanish. Grandpa, who is a retired businessman agrees, and says their daughter is molly coddling him and needs to start being a parent instead of a playmate for their grandson. Mom thinks her parents are wrong, but she realizes they reared four children and know a lot about young kids. “Maybe their right,” Mom thinks. “Maybe I just need to be firmer with him.”
Parents appreciate the assistance their child is receiving from enthusiastic, dedicated therapists. They are often very grateful and feel warmly toward their therapy team. But several deterrents make it difficult to translate this appreciation into active engagement, for some parents. After considering the following countervailing forces, you might conclude it is surprising parents become as supportively engaged as they do.
1. Parents are Suffering: In the beginning, the last thing parents want to be told is that they need to get going on providing early intensive behavioral intervention for their child. They are valiantly trying to accept, and adjust to the idea their child has a life-long disability. They are grasping at straws, trying to find a specialist who will tell them that the autism diagnosis is incorrect, or even if it is true, there is some sure-fire way\to fix it with some kryptonite magic substance that will zap the condition out of existence. There isn't, but nearly every parent searches for one, nonetheless. Being told they can look forward to devoting 15 to 30 hours per week of intervention for the next few years, and that even after that intensive treatment, s/he is likely to have residual signs and symptoms of autism, isn’t remotely on their radar.
2. Family Doubts He Has Autism: Grandma, who used to work as a nurse in a surgeon’s office, says she doubts Billy has autism. She had no specific training in children’s disorders, but she was a nurse after all, and understands a lot about medicine. She thinks Billy is just spoiled and if her daughter would just put her foot down, Billy’s problems would vanish. Grandpa, who is a retired businessman agrees, and says their daughter is molly coddling him and needs to start being a parent instead of a playmate for their grandson. Mom thinks her parents are wrong, but she realizes they reared four children and know a lot about young kids. “Maybe their right,” Mom thinks. “Maybe I just need to be firmer with him.”
4. Parents Can’t Afford Intervention: One family with whom I worked several years ago were receiving partial coverage of the cost of therapy from their health insurance company. But after a year of services, by which time their child was showing significant improvement, the insurance company refused to cover any further costs. As a result, the family was at risk of losing their house because of inability to pay for their child’s therapy and also their mortgage payment. Even in states where ABA services are largely covered by Medicaid, there are still expenses involved, such as one parent needing to be home during therapy, purchasing therapy materials, taking time off work to attend regular team meetings, cost of child care for other children while taking part in training sessions or meetings. Often parents are required to pay an additional co-pay depending on their income level.
6. Parents are Drawn to Alternative Therapies: A primary reason some parents are uncommitted to effective interventions is that they are drawn to ineffective alternative remedies. Dad attended a lecture given by an osteopathic doctor who says that using hyperbaric oxygen (see photo) and a special diet has a high success rate of in reversing symptoms of autism. The doctor showed a slide from an article that was published in the Journal of Neuropathic Medicine, which looked very scientific. When Dad came home from the lecture he told his wife he thinks they may be wasting their time and money with ABA therapy and that they should take their son to see this Osteopathic doctor and enroll their son for hyperbaric oxygen and dietary treatment. Dad says he thinks it has a good chance of curing their son’s autism. Mom says she has read articles on several websites from reputable organizations that say those methods aren’t effective for treating autism and are a rip off. This makes Dad, who is a computer programmer with background in chemistry and physics, very angry. He’s drawn to the scientific sounding treatments Their son’s pediatrician also said there is no evidence from controlled studies indicating they are effective. The couple argues on and off over several weeks, and discuss the alternative medicine choices. Finally Dad says he’s going to take their son to see the Osteopathic doctor, but that the Mom can continue ABA if she wants to, but he doubts it will work.
9. Differing Expectations: It is difficult for parents to become enthusiastically engaged when they are very doubtful the proposed methods will make a really important difference. A typical unstated parental thought is, “Even if we do everything they recommend with Adam, he will still have autism.” How can parents feel enthusiastically engaged when they are aware that their efforts will not achieve THEIR goal, eliminating their child’s autism. While young therapists are excited to see the gradually increasing slope on a graph indicating improvements in the child’s use of spoken requests, which portends well for the future, from the parents perspective, “Big whoop!” She is still having tantrums at bedtime and she is still pooping in her pants.
10. Parental Negativism/Skepticism: Nearly every parent enters into working with a behavioral intervention team with significant doubts it will work. They have tried everything they could think of to help their child, and it seemed to do very little good. The teacher at school has been unable to make any real progress. Grandma, who was a teacher her self, says that she doubts Emily is going to make much real progress, “But it’s worth a try.” This is where Heineman and Durand’s “Optimisim Training” comes in. It really can help turn around understandable parental negativism, and make it possible to see small gains as significant improvements, and to set more realistic goals. Learning to approach day to day challenges with a more realistically optimistic outlook can make a major difference for families of kids in the autism spectrum.
12. It’s Embarrassing: When friends come over in the evening to play cards and have some snacks and a drink, it’s very embarrassing when Ellie won’t go to sleep at night and keeps coming out of her room, and interrupting the card game. She demands that Dad go in her bedroom and sit with her reading one after another of her favorite bedtime books. Dad can choose between eliciting a protracted tantrum by refusing to go in her room, and excusing himself for a half hour or more while Ellie insists he sit with her until she finally falls asleep. The therapist and pediatrician have both advised that Mom and Dad follow a regular sleep hygiene procedure, and if Ellie cries at bedtime, let her cry. It’s very difficult to do that when friends or relatives are over for the evening or when parents are trying to watch a favorite TV show. Visitors may feel Dad is being unkind or lacks understanding of his own child. At least it feels that way to him. In reality, most adults who have had children of their own would likely think he should stick it out and tolerate the tantrum.
13. It’s Demoralizing: I will never forget Nicole’s wiping away her tears, with a dejected facial expression and the drooping posture. She is a bright, dedicated 40ish, well-educated Mom who said to me, “I don’t get it. Your young ‘girl’ therapists in their 20s come over to our house, and within a week are getting Timothy to do things I haven’t been able to accomplish with him in the past year. It makes me feel like an utter failure as a mother.” It is demoralizing to parents to feel that they are “doing everything wrong,” and that idealistic young therapists seem to be accomplishing remarkable gains with their child “without breaking a sweat.” It is often easier for teachers or therapists to make more rapid gains with a child with an ASD in the beginning, but once intervention is underway, and parents take over more of the intervention, suddenly they get the hang of it and progress abruptly accelerates. They find themselves marveling at their achievements with their child.
We need a road map that provides ways of overcoming each of these barriers
Early Intensive Behavioral Intervention has a very high success rate in improving functioning of children with autism. About half to 2/3 of kids in most studies end up in regular education after intensive early behavioral treatment, of whom about half do not require aides to support their learning. But there is little doubt that finding ways to overcome these barriers would promote longer term success. In the next phases of our efforts to disseminate behavioral intervention methods for children with autism and their families, far more attention needs to be given to anticipating and overcoming these barriers. As a field, professionals and parents need to work together to engender even greater parental confidence and success. Our field needs a road map that provides ways of addressing each of these barriers one by one. Who is going to get the ball rolling?