An Interview with Barry Stern- A Parent of a child with autism and an educational and workforce development consultant

Because each child on the spectrum is different, they and their families face different challenges.Nevertheless, I suspect most of us have the following challenges in common:

Early diagnosis.Most parents are devastated when they learn their child has autism.I know we were.The challenge is to get over it quickly and begin therapies that will help your child recover.The earlier the diagnosis the earlier a family can begin interventions to give their child a fighting chance to someday become independent and self-sustaining.Yet most pediatricians either misdiagnose our kids or wait too long to diagnose properly.This can negatively affect their medical care and delay the kinds of therapeutic and educational interventions that can help.

Behavioral issues.Our kids are so different, depending on their age, where they are on the spectrum and how effective therapy has been.Always vulnerable, they can be gentle and loving one moment, or aggressive and self-centered the next.The challenge is to remind ourselves that their unusual behaviors are not our fault or theirs, but they will need the best that is in us for their behavior to improve.

Our kids lose it every once in a while.You never know when or where it can happen or why?Some kids with autism go ballistic because of sensory overload—that is, when they hear loud sounds or there is a considerable amount of noise or activity in a location.Some lose it when a favorite routine is broken, or when there is interpersonal tension in the home or elsewhere.When our kids cry excessively or throw tantrums in public, we have to bear contemptuous looks that imply we are incompetent parents.

Toilet training, eating habits and controlling negative behaviors such as hitting, biting, and head banging are common challenges to parents.These must be addressed early in the child's life and continually.It is hard enough to deal with a young child with autism.But if you delay treatment until the child is a teenager and is bigger and stronger than you, your life as a parent can become a nightmare.

Stress.Parents in our situation are under considerable pressure. Parents with autistic children have an 80 percent divorce rate. We age faster.Our kids frequently don't sleep through the night, which cuts into our sleep, reducing our productivity and effectiveness at work, and our patience with our children.Many of us are going into debt to finance private therapies and expensive medical/dietary treatments. We continually fight about health insurance coverage, appropriate special education services, and needed social services like respite care.We often lose touch with family members and friends, because it is very hard for them to understand what we go through.

Finally, there is the added stress with a young or newly diagnosed child of trying to "beat the clock" with intensive interventions.This makes autism and other brain disorders perhaps more stressful than other disabilities, because you have the constant pressure to get this 30-40 hour a week program going as soon as possible because the evidence clearly shows kids do better the earlier they start.When schools resist the cost of providing enough hours of specialized therapy, parents fear losing that "window of opportunity" for their child to ever recover to the point they can someday become independent and self-sustaining.

2) In your opinion, how well prepared are the schools to educate, or train, if you will children with autism?

I come at this not only as a parent, but as an educator. In a word, our schools are overwhelmed.They simply do not know what to do with the rapidly increasing number of students with autism and other brain and developmental disorders.Despite the fact that special education funds from all levels of government continue to increase, children with these disorders rarely benefit from these increases.Schools do not have nearly enough staff with the expertise and experience to effectively design and carry out the customized programs these children require, and they are unwilling to commit to the full-year, expertly led programming that will make a difference for them.

In my view, we need a national strategy to train thousands more special educators in behavioral therapy and how to improve the receptive and expressive language of children with autism and related disorders.Furthermore, schools must see to it that these teachers have adequate systems of supervision, curriculum development, and evaluation to support them. The vast majority has no idea of just how intensive therapies must be to have any impact whatsoever. Every minute counts for these kids.They must be continually and systematically engaged in order to improve.

Some parents recognize that the public schools offer little more than warmed-over babysitting and provide their own therapy program in the home. This usually requires a well-prepared consultant in behavioral therapy, who develops and continually monitors the child's program and trains home aides who do most of the work. This is extremely expensive ($30,000 to $60,000 per year), inflicting financial hardship on many families.

Other parents send their children to private schools that specialize in helping children with autism and related disorders.The good ones have long waiting lists.Some districts in a few progressive states contract with these providers.This would seem to be the most logical solution, yet schools remain reluctant to bear the expense.A few states are addressing the issue by providing vouchers to special needs students or specifically to students with autism.These stipends rarely cover the full cost of tuition, but they provide some relief.

If government and schools do not step up to help these children, we are essentially condemning them to a lifetime of dependence, unemployment, illiteracy and, for many, institutionalization. This is stupid economics. A few hundred thousand dollars for intensive early intervention for four or five years — while a lot — is only a small fraction of the expected cost of supporting someone for a lifetime on government disability or welfare programs.

3) What, in your mind, is an "Appropriate education" for a child with autism? What skills does YOUR child need?

"Appropriate" depends on the child's age, where they are on the autism spectrum, and their progress toward becoming fully functioning.Until a child manifests "normal" communication, social and motor skills, they usually need costly 1-1 behaviorally-based therapy. Our kids are hard to engage. They do not closely observe their environment or naturally imitate the actions of others. Nor do they tend to seek out human interaction and communication.

Only a highly individualized and intensive program that breaks down learning into simple steps, reinforces appropriate behaviors, and creates opportunities for social interaction will overcome these barriers. The National Academy of Sciences and the Surgeon General recommends 30-40 hours per week of such behaviorally-based intervention. Fewer hours has little impact.Unfortunately, schools rarely reach the requisite 30 hours.Moreover, paraprofessionals, not credentialed graduates, deliver most of the instruction.In our district, students with autism spend 90 percent of their time with these aides; yet the aides do not get nearly enough supervision and training by fully qualified teachers.

Applied Behavior Analysis (ABA) is perhaps the most known and effective method for children with serious behavioral and communication difficulties.Perhaps only half will ever progress to the point where they can be mainstreamed into regular classrooms without personal aides.Yet even those who never become fully mainstreamed make notable progress. Children not given special care almost never progress.

Other developmentally-based methods are also beginning to find favor among parents.One is Floortime or Play Therapy, developed in the early 1990s by Dr. Stanley Greenspan. Floortime harnesses a child's natural interests and involves interactive play, as well as activities that vary a child's environment to teach language concepts. Another is Relationship Development Intervention (RDI) that focuses on cognitive and social development through carefully structured social experiences.

Over the past four years and beginning when our daughter Grace turned three, we have used a variety of methods.We have enrolled her in both public and private schools and developed a home program to supplement her school program.For the home program we hired behavioral experts to train a number of aides to work directly with Grace.We do the home program after school and during vacation breaks.

Downsides of home-based programs include the time it takes to set it up, difficulty in finding and keeping qualified, motivated staff, and the expense.On my dime we have trained personnel for other families and the public schools.Aside from the expense of continually having to fill gaps in our home team, continual staff turnover harms the child.

Since the public schools in our community cannot provide what our daughter needs, we enrolled her in a small private school in another community that provides customized programs for children with autism and related developmental disabilities.The school uses the "Association Method", a phonetic, multi-sensory teaching-learning strategy (auditory, visual, tactile and motor kinesthetic cues) designed for language challenged children.The school employs staff with backgrounds in behaviorally-based therapy.They are wonderful, caring people.Grace loves the school as do her schoolmates.Unfortunately, turnover is a problem.We learned recently the two lead teachers won't be back next year; their ability to earn more elsewhere, we learned, was the major reason.

What skills does our daughter need right now?Mostly expressive language and better gross motor skills. She has made much progress in following directions, understanding what is said to her, and performing daily tasks like eating with utensils and dressing herself.She is actually an advanced bed bouncer and gets a lot of height on the trampoline, too.On most days we see progress, which fortunately outnumber the days she regresses.Like most parents of special needs children, we live for and cherish the small "wins".These children can bring so much joy.

My wife and I constantly second guess ourselves about whether we have made the right choices at the right times regarding therapies, therapists and schools.Like many families who have gone through their savings and borrowed money to give their children with autism the education they need, we wish for faster, better results and some financial relief.

4) It seems that autism is increasing- some attribute this to the MMR (Measles, Mumps, Rubella virus) and others to heroic medical intervention. Were there any extenuating circumstances in your child's case?

Autism is indeed increasing.I cannot fathom claims that broadening the definition or better diagnoses of autism are the reasons for an "apparent" increase.Can you imagine what this country would look like if one in every 150 adults had autism, which is the current rate among 8-year olds according to a study released just a few days ago by the CDC?If autism was not increasing, wouldn't there be equivalent rates in both the child and adult populations?

Furthermore, I am convinced that environmental factors triggered our child's genetic predisposition to autism.My wife and I have seen data that our daughter has extraordinarily high levels of mercury, aluminum, lead, arsenic and other toxins in her system.Other tests confirm her body does not produce antioxidants to remove these toxins naturally.Additionally, we have seen genetic evidence suggesting that Grace would not be a good candidate for most childhood vaccines.Unfortunately, we did not know this until it was too late.We hope someday scientists will agree on the safety of particular vaccines and their dosages for children with particular kinds of brain and developmental disorders.

Certainly, we are aware scientists do not agree on the causes of autism and whether biomedical interventions and special diets can help.Nonetheless, our association with dozens of families with similar circumstances suggests that the most dramatic improvements occur in children who receive biomedical along with behaviorally-based interventions.Thus, we are working with specialized doctors to address Grace's deficient immune and digestive systems, and to remove toxins from her body while slowing her intake of toxins.Grace is on a gluten- and casein/dairy free diet; she eats organic foods exclusively; and we administer to her a data informed and doctor supervised protocol of supplements, vitamins, and antioxidants.

5) What problems have you faced with the schools over the years?

As I mentioned previously, the major problem is the lack of teachers and supervisors with appropriate expertise.In addition to knowing how to conduct 1-1 and small group instruction with behaviorally-based methods, teachers of children with autism need to understand how to integrate these students into the general education classrooms and to work in partnership with general education teachers. They need to know how to take data in the classroom and use it to be able to adjust their lessons to make the students successful. Too many teachers seem afraid of taking and using data to drive educational decisions.

A related issue is the ratio of paraprofessionals to professionals.In our local public schools, it's now roughly 5 to 1.It shouldn't be more than 2 to 1. Thus, No Child Left Behind's requirement to have a qualified teacher in every classroom is a joke for most autism programs.In our district, kids spend 90 percent of their time with paraprofessionals without a college degree.Some truly care and have a gift for relating to children like mine, but the fact remains that they have little knowledge of the scientific underpinnings of behavioral therapy and reinforcement.Thus, these aides need lots of expert coaching while working with our kids.Unfortunately, many of the teachers who supervise and coach them have little direct experience themselves doing the one-to-one therapy. You cannot really instruct others in the behavioral approach unless you have done it yourself.

Another problem is lack of continuity.Let me explain.Occasionally, you find an aide who is extraordinarily effective with your child.Yet the school often transfers the aide to another child, classroom or building, thus breaking the relationship with your child that has taken months to develop.Many schools do not realize that paraprofessionals are not necessarily interchangeable.The matching of aides to kids is one of the most important decisions special education programs will make and therefore should be made with the utmost care.

Another concern of mine is that schools do little to retain and promote teachers and aides who get outstanding results with autistic children.These people are "gold".Predictably, they oftentimes leave their jobs for more college or better paying jobs.Districts should be able increase the salaries of high performers to keep them in the schools.This might require separate collective bargaining agreements for teachers and aides who work with autistic children. Autism programs have unique scheduling requirements and need customized pay scales to attract and keep qualified staff.

Schools also need to ensure that the best teachers are in fact spending their time teaching or coaching their aides.An inordinate amount of the (autism) teacher work day is spent in meetings and doing paperwork. So the best talent rarely gets to work with the kids one-on-one, and their aides are left to flounder on their own for most of the day.We have found this not to be the case in private schools where teachers and aides are continually engaged as a team with the children.

It all comes down to money.Schools want to stay within their budget.Kids with autism are expensive to educate.So the public schools spend a little more on these kids than the average special education student, but not enough to make measurable gains.Thus, most school autism programs turn out to be expensive babysitting. This is not acceptable to me as a parent and taxpayer.

6) Has "inclusion" or "Full inclusion" been helpful or problematic for your child?

To benefit from inclusion the child must manifest enough proper behavior and language skills to be able to interact productively with normal peers.Thus, the child may need 1-1 structured teaching, which isn't as "natural" as inclusion in a regular education classroom, but it may be the way the child can maximize skills and knowledge in the shortest amount of time.You try to move them to increasing amounts of inclusion as their readiness improves.

In our particular case, we decided to forego the inclusion that our daughter had last year in order to provide more 1-1 instruction this year to improve her language skills.

The classroom teacher's attitude and professional readiness for inclusion is another pre-requisite for success.Most general education teachers have never taken a course in special education.Therefore, the special education teacher must provide assistance and see to it that the aide who normally accompanies the child into the regular classroom also knows what to do.Moreover, it is important for the child, the aide and the classroom teacher to work as a team.One teacher we had let the aide do all the work, so inclusion did not work so well.Another teacher made it a point to frequently bring Grace into activities she was conducting with other children.Grace thrived with that teacher.

7) Do you belong to any support group? Or network?

I belong to two groups.One is a group of parents in our local community that provides support to one another and the public schools.Our mission is "(1) to obtain the most appropriate education for our community's school aged children with autism spectrum disorders, based on best practices, through education and advocacy; and (2) to improve services for these children by educating parents and the community."Perhaps the major accomplishment of this group was its reason for getting together in the first place—to establish an ABA-based pre-school program in the school district.Since then we have lobbied for and even submitted to the Board a formal proposal for a comprehensive K-12 autism program.Unfortunately, we have been rebuffed at every turn.Despite promises for a "world class" program, there is little available for our children once they leave the pre-school.Last year the district hired one behavioral specialist to coordinate all autism activities for 130 children.She lasted only a year.We believe our district requires at least 6-8 teachers with training, experience and credentials in behaviorally-based programs, dozens of aides with some training, and a top flight program supervisor to hire and guide them.

The other group I belong to is a statewide organization that is just emerging.Its mission is to ensure effective statewide policies and oversight to ensure that all special needs children obtains "meaningful educational benefit for a lifetime of maximal productivity".Our group's first initiative is to deal with the issue of public agency responsibilities for private placement of students with disabilities using public funds.According to federal law, schools are supposed to use private placements when they are unable to offer a "free and appropriate public education" (FAPE) in the "least restricted environment" (LRE), to ensure "meaningful educational benefit".By working with the state Department of Education and the Legislature, we are endeavoring to bring state rules, regulations and practices into compliance with federal law.We shall tackle other statewide issues once this "domino" falls.

As a practical matter, private placements is a rarity in Michigan--only three families have gotten one in the last 7 years, and they had to go to due process to get it.We believe that opening up the special education system to qualified private providers will attract more qualified professionals to the state and provide a talent pool that all agencies can draw upon, including the public schools.

8) What seems, in your mind to be the shortcomings of special education?

Where you stand depends on where you sit.From the perspective of a parent of an autistic child, I'd say the major shortcoming is that the schools, state and federal departments of education have not organized themselves to deal with the rapidly growing number children with autism and related brain and developmental disorders.The learning challenges of these children are so unique that they really need their own programs with specialized staff.Many school districts are beginning to realize this and are developing units within their special education departments to teach these children. Yet the vast majority of states and the U.S. Department of Education have no such specialized units.

Too many schools are not parent friendly.Rather than invite interested parents to come visit their kids during the school day and help out, many teachers and principals perceive parents as the "enemy".They should get real.We know our kids, and school staff needs to know what we know.So, get rid of those clauses in collective bargaining agreements that keep us out of classrooms, and train teachers in how to use us to benefit the education of our children with disabilities.

Another shortcoming is that special education programs are not holistic.Schools should use more natural environment training that combines physical education, art and music with academic learning.Most kids, including those with autism, learn more by moving than they do remaining in desks and chairs all day long.Most don't get enough physical exercise, and too many are obese.So schools need to figure out, for example, how to combine reading with physical games, as Rousseau did centuries ago.Or they might combine math with music, as they do in Trinidad.Children with learning disabilities, especially, tend to thrive on physical activity.Rather than deny their strengths and preferred modes of learning, special education should build on them.

Kids with special needs need more time on task than their normal peers.Yet for many, particularly those with autism and other brain and developmental disorders, the school day is too short to obtain gains, and the school year is too short to sustain them.Many regress when treatment is interrupted even briefly.To accommodate longer school days and years, special education requires more staffing and salary flexibility than other school programs.As suggested earlier, this is a reason for separate collective bargaining agreements for special education teachers and aides.

Finally, the No Child Left Behind (NCLB) law has brought to light that special education is largely unaccountable.Few programs have benchmarks indicating whether the program is producing sufficient results for the money being spent.Few have financial systems that enable persons outside the schools to find out where the money is going and whether the school administration is using special education funds for other purposes.

9) Are the special education teachers, in your opinion adequately trained to work with children with autism?

No.In my opinion, almost every school that enrolls children with autism violates the federal NCLB requirement to have a qualified teacher in every classroom.Being a certified special education teacher is not enough.Peer reviewed research suggests that only teachers with deep training in behaviorally-based methods can measurably help these kids (the courts are just beginning to test this).To improve public school capacity to educate these children, the federal and state governments should establish financial incentives for universities and students to accelerate the professional preparation of specialists in behaviorally-based therapy.

9) What would you like to add?

The large and increasing public investment in special education is not paying off.The system is sclerotic, bureaucratic, unaccountable, anti-parent, and resistant to change.It is drowning in paperwork, meetings, and litigation.Schools are totally unequipped to deal with the autism "tsunami".Parents with legitimate complaints are treated by schools with condescension if not disdain.Those who speak too loudly risk school retaliation by not providing services to their children specified by the IEP.

The system needs a total makeover.I have two modest suggestions.First, split off intake, diagnosis, and program evaluation from the school system; instead, contract out these functions to universities, hospitals, and other non-profits that specialize in diagnosing disabilities.These diagnostic centers would evaluate special education students each year to assess their progress, suggest I.E.P. goals and ensure that those who no longer need special services return to the mainstream program.Schools providing these services have a built in conflict of interest.For them, financial considerations far outweigh what will benefit the child.

Second, use contracting out, special education vouchers, tax credits and the like to bring into the system more private providers and talented professionals.It will take many more public-private partnerships to provide the customized services that our children deserve. Additionally, the introduction of competition will result in a much more cost-effective system—one that actually fulfills the goals of the federal law passed over 30 years ago and brings satisfaction and hope to parents who have fought so hard for their children for so long.

Barry Stern, Ph.D. Consulting services in educational management, workforce development, strategic planning and systems design.

Published March 5, 2007