Research clearly shows that parents who read to their children, take them to the library, talk to them over dinner, and take them to museums and cultural
events have children who do better in school than children who come from families who watch TV through dinner or each plug into their electronic de- vice of choice. The same is true for children with autism, only parents need to learn how to reach them differently if they are to provide a comparably rich upbringing. The observation that the child with autism does not seem able to learn the same as siblings, cousins, or neighbors is what typically leads parents to have their child evaluated in the first place.
In this vein, research such as the JASPER program at the University of California at Los Angeles (UCLA)5 or PRT parent training at the University of California at Santa Barbara6 provides great examples of how parents of children with autism who are taught to understand and work with their chil- dren themselves have kids who do better and also do better themselves (are less depressed, less anxious, possibly less vulnerable to quackery). One of my own current clinical efforts is a parent training program called JumpStart—
Learning to Learn.7 Parent training may focus on social skills, communication, behavior, or all of these, but it is a new direction in autism treatment.
Interestingly, applied behavior analysis (ABA) programs (one-to-one behav- ior modification for autism that I critique in detail in Chapter 4), which are now the single most costly element in autism treatment, began with the work of Dr. Ivar Lovaas— and actually included parent training. When Lovaas first founded a treatment program based on his research, he initially required one parent (over the course of the child’s first year of treatment) to become their child’s senior interventionist and program manager. There were no commer- cially available ABA programs in the 1980s as there are now, so this was prac- tical, but more important, the parent involved in the ABA home program knew exactly what the child was learning, how well the child knew it, and what it took to elicit use of newly acquired knowledge. The synergistic effect of this was that when the mother, as lead interventionist, took her child for needed gro- cery shopping after a daylong intervention program, she would quite naturally prompt the child to label colors of canned goods (if the child had been learning colors) or to point out vegetables (if learning words for foods) or ask the child to verbalize yes/ no choices when she came to the breakfast cereal isle. The mother was part of the intervention team, so she knew just how to orient the child’s at- tention and how much to prompt and was sure to reward a correct answer.
This essential ingredient, teaching the parent how to be integral to his or her child’s ability to progress (and requiring it), has largely been lost from home- based ABA today, as well as from special education. Instead, parents “help” their child by spending much time driving from intervention to intervention, on the phone fighting with insurance companies, making appointments for assessment after assessment that may not yield further direction for treatments, preparing for meetings with schools, and then fighting with schools when they are anx- ious that what has been offered is wrong or not enough. Preparing parents to be integral to their child’s learning, in the style of late 1980s ABA programs,
needs to be restored. A child’s parent is not uniquely qualified to be his or her chauffer or secretary; rather, parents are uniquely qualified to know most about what their child can and can’t do and what motivates the child.
Parents already lose much time from work just doing the work needed to or- ganize school and therapy appointments. Often, the home ABA programs don’t really know how to help parents actively collaborate with the rest of their interven- tion team; even such collaboration can add a unique voice. Sometimes there is the concern that the mother might want to do things her own way or might ask chal- lenging questions about working with her child that the low- level “line staff” who provide 80 percent of ABA hours are not trained enough to answer. Truthfully, most often, schools don’t want the parents around much either. So, many parents of children with autism have filed lawsuits that many special education directors can readily envision a parent visit as a lawyer- directed opportunity to gather data that can be turned into legal complaints. As a result, parents often are cut off from learning new ways to help their child through their children’s therapists and schools. What can we be doing instead to ensure parents have the skills to help their children themselves during all the hours no therapists, tutors, or teachers are around? Even a child with 40 hours per week of therapies has another 40– 50 hours per week awake, not in therapy, and in the charge of parents or other caregivers.
The Case for Parent Training
The key ingredients for high- quality parent training is that parents must receive individual instruction around their child— not come to generic autism training classes where they will be scared by hearing about children with problems more severe than their own or depressed to hear about children with fewer problems than their own. Children with autism are too different and families are too dif- ferent for efficacy to be associated with such generic training— and experience with parent training programs supports this.
We need more programs that train parents, providing them with an individualized psychoeducation tailored to their own child. Parent training consultants can focus on developing parents’ competencies in teaching through the activities of daily living, communication, and play that occur in all homes in the hours when there is no school or therapy. These staff have to be professional- level behaviorists, speech and language pathologists, play and social skills therapists, specialists who understand development and learning, not just entry- level technicians as in home- based ABA programs.
This type of individual parent training should be paid for by med- ical insurers or by state developmental service agencies just the way ABA programs are. When we consider bang for the buck and the very high cost of home ABA programs, parent training is a better economic value compared to the same dollars applied to more direct service from minimally trained ABA line staff. For example, a month of salary just for line staff in a 30- hour ABA program might cost $4,000. A full- time, week- long parent training program
with one family, 1:1 with one professional at a time, might cost about the same. Parents who have been coached to apply behavioral, communication social skills, and play techniques that fit their child’s developmental level can then fill in the 40– 50 nontherapy hours each week with “teachable moments”
that naturally immerse the child in wraparound learning.
Policy Concerns: Parents Have Rights— And Responsibilities
I have served as an expert in over 100 educational due process hearings about ac- cess to ABA for children with autism, appearing on whichever side I understood to best represent a plan in the best interest of the child. In one early hearing of this sort, in New York City, the public authority was to provide ABA but required the mother to do “line staff” work about 10 hours per week herself. The family, represented by the child’s father, who was an attorney, argued that requiring his wife to work in the program was tantamount to slave labor. The research we have today that demonstrates the positive relationship between parent training and child outcomes did not yet exist, though we did know that children at the Lovaas Clinic at UCLA, where ABA for autism had started, required a parent to be- come a “senior therapist,” who, while providing more therapy hours, also would learn a lot about how the child could learn. You can surmise from what I’ve said about parent training that I testified that this child would be better off if his mother did spend 10 hours per week working in her child’s ABA program, just as the Lovaas Clinic parents had. I supported this parent having to take some personal responsibility for her child’s progress, not mainly to save the state of New York the money, but because it could be expected to be linked to a more im- mersive learning experience that her child could then have in nontherapy hours.
From the start of special education planning for a child with any learning difference, educators provide parents with a written copy of their rights under the Individuals With Disabilities Education Act (IDEA) prior to every individualized education program (IEP) meeting and review it with them.
Parents sign that they have received it and understand their rights.
What about parental responsibilities? Under any updates to IDEA, there should be consideration that parents receive either parent training in their child’s disability (not only autism, but also think of parents of deaf children) or learn through classroom volunteering or participating in supervised educa- tion sessions with school staff, the child, and a parent. We know from research that generalization of taught material will be broader if parents are able to pro- vide practice and reinforcement of new skills outside the school day. Let’s put something “special” into special education and define responsibilities as well as rights for parents since parent involvement is correlated with better outcomes.
Create Mentorship Roles Between Teacher and Parent
Individualized parent training can serve as an “operating manual” for parents of a child newly diagnosed with autism. However, learning how to support
their child’s development becomes a task for parents throughout the child’s school years. Attracting teachers to special education can be challenging.
Keeping trained teachers in place is another challenge. One problem is that teachers trying their best can feel unduly criticized by parents. When parents are critical of teachers, it may be they don’t understand why things are done as they are. Teachers trying their best with too few staff, or too many children, are less likely to have a good chance to show parents what they can do. It goes without saying we need more teachers, better paid teachers, more paraprofes- sional aides supporting those teachers, and better trained paraprofessionals.
Another approach to the need for both parent training and high- quality special education is to bring parents into the classroom as paraprofessional teachers. The familiar parent– co- op model used by preschools is a template: In a cooperative preschool, parents help where the teacher directs them. In a special education program, as with a paid para professional aide, the teacher should be responsible for on- the- job- type training of a parent serving as a para- professional. The result of such a relationship can be the parent learning more about teaching children with autism, learning skills that can be taken home to further teach their own child, and maybe even new respect for the their child’s teacher as a trained professional.
Conceivably, some such positions could be paid ones as schools chronically lack a pool of qualified paraprofessionals, and this might be helpful to lower income families where the caregiving parent is losing the opportunity to earn a living by spending time with his or her child with autism. Since the basic qualifications for being a paraprofessional aide in a public school classroom are so low, a parent, just by virtue of parenting experience, could scarcely be less qualified than most other paid paraprofessional aides. The aims of any program to bring parents into classrooms should be to educate the parent in how his or her child can learn, as well as to build a culture of more collabora- tive relating between parents and teachers.
This model for a child’s teacher to also be the parents’ teacher is obviously a fit for the early years of intervention and education. The early years are where a parent’s foundation for understanding autism is laid; well laid, it can continue to guide parents as their child’s decision- makers.
RECOMMENDATION 2: REVISE THE FAMILY MEDICAL LEAVE