Legacy Center Graduate:  Children and Autism

In 2011, the Centers for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring Network reported that approximately 1 in 110 children in the United States has an Autism Spectrum Disorder. This represents an increase in the prevalence of autism disorders compared to earlier in the decade when prevalence was cited as 1 in 166 and 1 in 250. In the nineties, prevalence was 1 in 2500. It is difficult to compare autism rates over the last three decades, as the diagnostic criteria for autism have changed over the years, No matter what, this has become a problem we get to deal with in powerful and effective ways.

Stephanie Ray, a Legacy Center graduate, NC129 Leadership, has written an article about autism and parents.

What parents should expect from school professionals

(reprinted Raleigh Autism Examiner)

As you are reading this, another woman is giving birth to a child with autism. He won’t be diagnosed for a few years, but when he is, his mother will probably search frantically for treatment options; options that range from shock therapy to alternative schooling to intensive home programs. Most parents don’t even question the scientific validity of treatments. The majority of parents, especially new ones, tend to take ideas heard on television talk shows, printed in magazines, or blogged on the internet as fact and scientifically relevant when there is NO evidence to attest to the treatment’s validity. While it is excusable, to an extent, for parents to get caught in the whirlwind of autism treatments presented in pop psychology today, it is NOT acceptable for school professionals to do the same. What should parents of children with autism expect from their school administration and professionals?

Schools have nothing to learn from pseudoscientific treatments, but they have plenty to learn from marketing strategies. Responsible professionals find these treatments hard to accept and consider it unprofessional to let their students and parents cling to unrealistic hopes. However, while school professionals need not nurture false hopes, neither should they ignore the power of hope and the parents’ emotional needs. Parents need to feel positive about their children’s educational environment and the ability of that environment to meet their child’s needs. This applies to the parental population as a whole, but especially for parents of children with special needs. Parents need to feel useful; they need to feel like they can make things better for their child and it’s the school’s job to nurture that feeling.

How should school professionals respond when parents request for services a district is unable—or unwilling—to provide? It is the responsibility of the professional to investigate it. Families should be encouraged to discuss what they’ve heard. To understand the concept, professionals should watch the program or read the article that inspired the parents. They should search for value in the teachings, for they want to appear as credible as talk show hosts, right? If they feel the information presented in the program or article about a “miracle” treatment is not valid, they should explain why and what would make it more valuable. School professionals are dealing with a fragile entity, parental hope. They want to direct the parent’s energy away from an unreasonable program and toward something constructive they can do for the child—together.

The best defense against an unreasonable demand is a good assessment. This can reassure parents that someone understands their child as well as, or better than, the family. However, it is important that school professionals don’t try to bluff the parents. It’s better to go into IEP meetings with questions that with pat answers. If school staff have incomplete information, they need to be honest about it. Most parents will respect professionals who say they need more time to evaluate the child or want the parents’ opinions on issues as well as solutions.

Ideally, a starting point would be established by parents and school staff as a team. Once this is done, setting appropriate goals can be a difficult task for both professionals and parents alike. A main reason for this could be that our society hasn’t done a satisfactory job of articulating goals of regular education, let alone special education. Parents generally have a fuzzy recollection of their own school experience—recalling nine months a year divided between academics and recreation. Perhaps they think the only educational objective was graduation and preparation for college.

Parents assume special education will be different from regular education, but they don’t really know what to expect. They may ask “What exactly will my child be learning?”, “How will I know if they are making progress?”, “How will the teacher reach all the children when they all have different disabilities?” and possibly most importantly “What is the ultimate goal of my child being in a special education classroom?” The uncertainty can add to their uneasiness. They already have a child who can’t fully understand; now they have to deal with an educational system that hasn’t been clearly defined!  Some parents hope special education will help their child catch up with other students. They may hope for a total recovery by graduation. However, most parents recognize that their child’s disability won’t fade with age. Rather, the child with a disability will become an adult with a disability. Eventually, even the most hopeful parents face their compromise with destiny.

As a school professional, it is our job to join forces with parents in service to the child. This may mean being open to new ideas, facing being questioned about our own beliefs, and willing to make sacrifices for the success of the child. Parents rely on school professionals to provide top notch services to their child with autism and expect nothing less than our very best. It is the job of the school professional to create an educational environment that is both nurturing for the student and satisfying for the parents.