Program Guidelines
Educational Consulting Services
Connecting Home and School
Autism/PDD
From Diagnosis To Educational Plan:
Considerations for the Family
and the School
I. What is Autism and what do I need to know to protect myself as a consumer of treatment services for my child?
When an infant or toddler exhibits social and communicative delays a parent's first thought is “What is wrong with my child?”
Sometimes the concerns are not indicative of a permanent condition or syndrome. Other times the concerns of the parent are shared by a pediatrician and a diagnosis of autism/PDD may be given. Upon getting a diagnosis of autism or Pervasive Developmental Disorder, the parents usually begin researching and talking to other parents to find out what autism/PDD is.
Generally they discover that children with autism do not have a singular constellation of characteristics. Most commonly they share a broad continuum of disorders in the areas of communication, socialization and play.
They often show an uneven profile of cognitive skills with areas of weakness in imaginative play, communication, sequencing, integrating, organizing and generalizing information with strengths in visual and rote acquisition of information.
Their behavior often seems odd, marked by obsessive interests, repetitive movements, rigidity in routines, peculiar responses to everyday stimuli and a lack of appropriate social interaction.
Generally, medical/psychological explanations and diagnostic criteria do little to explain what can be done to help the child or where to begin.
Often parents seek out “cures” or educational programs that are based on what they have run across in their research or based on what a friend or acquaintance has done with their own child. Occasionally, they turn to a professional or “expert” in the area of autism. If they are fortunate enough to live in area with a variety of medical and educational resources or if they are able to utilize the information gleaned from books and research, they may be able to formulate a plan for helping their child. With continued support and adequate local resources they may be able to help their local school provide an adequate program for their child. But often they are faced with personal confusion and a host of conflicting opinions. Schools frequently do not have the expertise or the resources to adequately deal with the educational needs of a child with a diagnosis of autism. Parents and schools are often left with more questions than answers and the potential for adversarial interactions is increased.
For lack of comprehensive information and resources families often decide upon treatment based on availability of the resource rather than upon potential effectiveness. The unfortunate fact is that resources for effectively treating autism are typically scarce in any particular locale. Parents often feel that they need to do what they can and as soon as possible. Having committed scarce family resources of money, time and hope to a particular treatment or approach often leads to a need to believe that the choice of intervention or treatment is the best one available. This need to believe can lead to defensiveness and close-mindedness. Close-mindedness often leads to confrontation with schools.
Schools are often also to blame in closing down communication with parents regarding effective treatment by not recognizing what parents may have achieved through a particular treatment and what the parents believe to be true about a particular treatment. Too often there is a need on the part of the school to place children into a particular classroom rather than to assess them carefully and create programming that recognizes the families input and understanding about autism and effective treatment. Too often the family knows more about autism as a disability than the school system. These factors promote mistrust.
The cornerstone for development of programming and the building of trust and communication between families and schools is a comprehensive assessment that looks at skill issues across educational and developmental domains. The assessment should help delineate specific areas of need and specific goals and objectives for school staff. Treatment methodologies and strategies should be based on and directed to specific objectives. Methodologies frequently utilize a limited set of educational strategies. Wholesale adoption of a particular methodology or treatment strategy for all educational objectives must be avoided. Educational research has managed to delineate a host of specific strategies that work well to teach specific skills to children with autism. Teachers and parents must work to develop their knowledge of treatment strategies and their awareness of assessment procedures.
Effective programming for and teaching of children with autism are dependent on eclectic skills across teaching domains and a broad knowledge base about autism, methodologies and treatment strategies. Experts who adhere to one school of thought or who claim exclusive benefit from a singular approach should be viewed with healthy skepticism. They may have much that is useful to give, but a teacher or parent would be wise to glean and use information from them based on a particular child's need, not on their claims of broad and universal efficacy.
The family must work as an advocate for effective assessment as well as treatment. The school must promote communication with the family to make certain that the families needs and beliefs are attended to in the assessment process. The family and the school must rely on a comprehensive assessment for program creation and development. The assessment should be a vehicle for the family to express their knowledge and a document that can be used by the school to create programming and develop staff expertise.
II. Which educational strategies or approaches to remediating autism are best?
To make an informed choice about therapy or educational services for your child it is important to know that a child with a diagnosis of autism is first and foremost a child with a complex and unique set of needs and interests. A child with autism learns for the same reasons that any child learns: curiosity and a need for mastery. The best therapy or approach for teaching is debatable, but a therapy or approach that does not promote generalized, contextually meaningful learning is incomplete and potentially harmful. Learning that has no natural social, emotional or contextual meaning becomes rote and non-functional.
Any therapeutic approach must be evaluated in terms of how well it promotes normal social and communicative interactions within the child’s world. Educational or therapeutic content must be precisely targeted, but it must be embedded in or generalized to meaningful activity if it is to be truly useful to the child.
Unfortunately, there are many conflicting ideas about how to “treat” autism. From vitamin therapy to holding therapy there is often little agreement among professionals as to which approach or combination of approaches is most beneficial.
Currently, no one approach or treatment has been recognized by medical or educational professionals as a panacea for all children with autism. Some children who display mild or moderate delays/disorders in communication and social ability tend to show marked improvement over time without extensive or intensive interventions. Other children who display significantly more severe delays/disorders tend to benefit from only the most intense procedures. These children rarely make dramatic improvement.
There are numerous anecdotal accounts of marked improvement or recoveries due to the implementation of a particular nutritional regimen, therapy procedure or program, but no one approach or treatment has been dramatically effective with all children. There have been some case studies and research indicating that intensive, behavioral based, 1:1 therapy can produce dramatic and lasting effects with some children with autism if done long enough and intensively enough (Applied Behavior Analysis or Intensive Behavior Intervention). This particular form of therapy has been readily promoted by parent groups, but has not been seen as necessary or desirable by most school districts. As with most current therapies for children with autism, this form of treatment has its proponents and adversaries. This behavioral approach is often countered by proponents of a more developmentally based school of treatment called "structured teaching" or TEACCH: Treatment and Education of Autistic and Children with Communication Handicaps. TEACCH does not claim to cure autism. Rather TEACCH attempts to increase the child's ability to function independently to his or her maximum potential. TEACCH assesses the child and the child's environments and attempts to create environments and supports that allow the child to gain skills toward independence in daily living.
Each of these schools of treatment has merit and application within a classroom setting, but no matter what therapy is implemented or how intensely it is applied, the determination of the “best current therapy” or program should not be the goal.
The goal should be to help a particular child participate more fully, successfully and joyfully in the daily opportunities for social and productive activity that make up his world. Whether a child prospers best and fastest through a behavioral or developmental model is not the real issue. Aspects of both approaches should be and need to be incorporated as fits the needs of the child.
Inherent to all aspects of this discussion are the issues of developmentally appropriate goals and the child’s willingness and interest in participation in a particular activity. Many of the skills that are most needed by a child with autism cannot be taught without the child’s willing participation. That participation can only be insured through adequate motivation. That motivation can be supplied either extrinsically (rewards) or intrinsically (child’s natural interest).
One must realize that not all skills can be taught utilizing intrinsic motivation but that intrinsic motivation is a more powerful means to insure functional learning. The more developmentally ready a child is for a particular skill, the more likely it is that the skill will contain some intrinsic value for the child. These tenets hold for all children and it is vital to always think in terms of the “typically developing” child as a reference point or outcome goal when considering what approaches to use with a child diagnosed with autism/PDD.
III. What should my child’s school program look like?
The starting point for determining the goals and objectives for an educational program is the child and the family.
Who is the child? What are his likes and dislikes? Who is this family? What does it value? What does the family want for the child? How does the family environment work or not work for the child? Where and how is the child successful? Where and how is the child not successful? What can the family bring to the program? Does the family have the resources and desire to foster and promote high expectations for this child behaviorally, cognitively, communicatively and socially? What should the school and home programs look like to match the needs of the child and the family?
The school and the family are a natural unit for assessing a child, determining needs and planning appropriate goals and interventions. This partnership must be viewed as a partnership of equals if it is to be effective in producing meaningful growth for a child with autism.
The school has a legal obligation to provide a free and appropriate education to all children. A parent has a right to demand that the school makes every effort to understand the needs of their child and attempt to provide a program that addresses the needs of their child in an effective manner. To insure that the child is accurately assessed and that an effective program is determined and implemented the school needs consistent procedures for diagnosis, assessment and program determination. The parent, child and family are the cornerstone of this process. The school must insure that the educational program for children with autism meets recognized minimal standards for quality of curriculum content and staff expertise.
IV. What do adequate school assessment procedures look like and what constitutes an appropriate school program for a child with autism?
Legally the school district must provide a reasonable and appropriate education that has the potential to result in meaningful outcomes. The school district is not legally bound to provide the best or most intensive approach available.
Currently, there is no research that demonstrates conclusively that one approach will work best with all children with a diagnosis of autism. There is evidence that suggests that for a program to be reasonable and appropriate to the needs of a child with autism certain programming elements and assessment procedures should be implemented.
The following assessment outline download addresses developmental issues and behavioral characteristics inherent to a diagnosis of autism. Additionally, it looks at the child's interests, appropriate instructional goals and at what age to focus on specific learning issues.
