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The Informed Parent

Autism Part II: What Happens After The Diagnosis Is Made

by Sandra Smith, Ph.D.
Published on Jun. 16, 2003

Introduction

In a previous article, AUTISM: BASIC FACTS FOR INFORMED PARENTS, (The Informed Parent, July 15, 2002) readers were provided with an overview of the developmental history of autism, or the pervasive developmental spectrum disorders. It was noted that while much remained to be known, we now understand that these disorders comprise a wide range of presentations. Parents were told about the early signs of both autism and Asperger’s syndrome. Major signs and symptoms from both disorders were specified in an attempt to help informed parents decide if they should seek further information or assessment. It was emphasized that while most normal children would exhibit some of the behaviors described, the symptoms of autism and, to a lesser degree, Asperger’s syndrome, were persistent and debilitating. Children with pervasive developmental disorders demonstrate impairment or difficulty in the management of usual, age appropriate behaviors. These are apparent, generally, at home, at school, and in the community at large. It was recommended that parents who suspected that their child might have a developmental spectrum disorder contact their pediatrician or other health care professional.

The second article will focus attention on providing informed parents with an idea of the resources that are available to them, and to describe appropriate courses of action.

I Suspect My Child Has Autism, Asperger's Disorder, Or Another Developmental Disability—What Do I Do Now?

(1) Get An Evaluation

Start with your own pediatrician. He or she may recommend that you consult a developmental pediatrician with special expertise in autism and/or Asperger’s syndrome. Usually the pediatrician you choose will end up evaluating your child along with a team of other professionals, including but not limited to child psychologists, speech therapists, occupational therapists, and behavioral therapists, to determine exactly which services your child requires. Sometimes a licensed psychologist is the first professional to make the diagnosis. In this instance he or she will make appropriate medical, educational, behavioral and other referrals as necessary.

(2) Follow The Recommended Diagnostic And Treatment Plan—Hang In There When The Going Seems Slow

Every state in our nation is mandated to provide a free evaluation and early intervention services plan for children sspected of having a pervasive developmental disorder.

In California the service is provided through the Regional Center. To learn the appropriate contact in your state, call the National Information Center for Children and Youth with Disabilities: (800) 695-0285. Ask for information about support groups in your area as well.

Is There A Cure For Autism?

There is no known cure for either autism or Asperger’s syndrome.

Well Then, Is There Treament For Autism?

YES, there are many treatments that can make a difference. Some of these include:

(1) Speech and Language Assessment and Treatment

Speech and language treatment can help children overcome the language and communication barriers that impede their development.

(2) Educational Therapy

Generally, very structured educational environment works best. Consult with your local school district regarding the availability of services for your child -- often, an Individual Educational Placement (IEP) is critical to ensure that all teachers as well as consulting/treating practitioners provide your child with the best possible educational environment in the least restrictive environment. Annual IEP meetings can ensure that your child’s educational experience is as optimal as possible.

(3) Occupational Therapy

This form of intervention works well for children who need assistance in the development of motor and sensory integration skills.

(4) Medication

Medication may reduce some symptoms in some children. Consultation with your pediatrician, developmental pediatrician (or in some cases a neurologist or psychiatrist) is recommended.

(5) Behavioral Therapy

Finding the right person to help your child improve cognitive skills and reduce inappropriate behavior is inestimably important. Generally, much of this training occurs on a one-on-one (your child with his or her “trainer”) basis. The trainer may work with the child in the home, in the school, in the greater community, or in some combination thereof. Social skills training, particularly in a small group format, can be very useful for reducing inappropriate or awkward behaviors while systematically, and positively, shaping behavior in more appropriate ways.

Are You Sure There Really Is No Cure? That Seems So Pessimistic!

Actually, it is realistic.

Over the ages, each human condition which produces lifelong disabilities, and for which no effective ”cure” has been found, becomes the focus of claims of THE curative treatment. To date, reputed reports of “cure treatments” for autism have included diets, medication regimens, various psychotherapies, and some behavioral therapies that might even be described as mystical, or magical. Certain of these reputed cures have come and gone, and come again with some minor variation or even a simple name change. Lorna Wing (2001) discusses autistic children as not unlike children with visual or hearing impairments. Education teaches them skills. It does not cure the underlying, biological disability.

There are, as outlined by Wing, three major problems in attempting to evaluate any treatment as curative. First, most methods (except for the most bizarre) probably have a grain of truth. Holding and snuggling a child through a temper tantrum, for example, may be helpful. It does not, however, CURE the underlying impairment. Likewise, training in auditory integration may reduce hypersensitivity to sound; it does not CURE the autism.

Second, children with autism, and to a lesser degree Asperger’s syndrome, tend to demonstrate uneven development. They usually develop their skills in sudden spurts. If a certain intervention happens to coincide with a period of quick growth, we may incorrectly assume that the growth spurt was the direct result of the intervention.

Third, adult outcome studies may be limited by the significant factor of innate ability. Children with high levels of ability and skills are likely to do well as long as they receive appropriate education. There are no methods that have proven their worth in claims of a cure. Treatments do, however, facilitate the development of educational, social and personal skills that maximize the potential for a positive adult outcome.

How About A Case Vignette/Summary?

This is an imaginary case in which the outcome is, hopefully, neither too Pollyannaish nor excessively dim. The more stories one hears from parents of autistic and Asperger’s children, the more one realizes that the range of functional ability for children diagnosed among this dimension is nothing short of amazing. This would be an important factor to bear in mind as you read the following, fictional case vignette.

Steve and Susie Conklin consulted me to deal with a family crisis. They had recently adopted an infant child Jonathan, their second adoptive son. The Conklins’ first son, Daniel, was eight years old. He had surpassed all of their parental expectations. He was a good student and solid softball player. He presented as an engaging, intelligent child with a ready smile and a finely honed sense of humor.

Jonathan was five years old at the time of referral. The history indicated that Jonathan had not yet begun to talk by age three. Although Mr. and Mrs. Conklin initially attributed this delay to his older brother’s tendency to speak for him, they consulted a neurologist when they began to compare notes about other aspects of Jonathan’s development in comparison to that of his older brother. They recalled, in particular, that Jonathan never pointed out objects. Mrs. Conklin stated, “Daniel was pointing things out to me long before he could even say a word!”

The neurologist told the Conklins that their younger son was probably autistic. He advised them to consult with their local school district.

Mr. and Mrs. Conklin recall feeling devastated at first. They consulted the information available, at least the parts that weren’t too scary to read, on the Internet. Then they followed the neurologist’s advice and contacted their neighborhood school.

The local school district initiated a speech and language therapy program for Jonathan almost immediately, which facilitated his communication skills, and hence, his ability to interact more effectively with peers as well as parents and other authority figures. From there the Conklins found the staff at the local elementary school, as well as a local community support group, to be invaluable sources of information.

At four years old, Jonathan was able to maintain conversations for several minutes at a time. In addition to ongoing speech services, he had received occupational therapy that had diminished his sensitivity to loud sounds. He had access to a behavioral therapist who had provided him with one-on-one training to help him enhance focus and develop other cognitive skills that would be critical for school success.

The Conklins primary concern at the time of referral was related to Jonathan’s social skills. They noted that he often felt awkward and even out of sorts around other children. They believed that he probably wanted to join in but simply wasn’t certain about how to proceed. As a result he often played alone or on the sidelines of other children’s play. The Conklins requested that Jonathan be considered for a social skills training course, a request which was highly appropriate. Jonathan would soon be entering kindergarten. The psychologist they had consulted was happy to formulate a treatment plan designed to enhance Jonathan’s social skills.

It is now two years post referral. At age seven Jonathan is functioning well in his local elementary school. He is identified as a student with special needs, and he has an annual IEP meeting to ensure that his educational program is custom-tailored for him. He adores his older brother. He has a few close friends. He is described by his parents as “basically a happy fellow”. Although his parents realize that Jonathan will always require specialized planning and intervention to learn important life skills, they are gratified about the tremendous progress he has demonstrated so far, and are hopeful about the future.

Summary

In this article I have attempted to provide informed parents with an idea about the appropriate course to follow if they suspect their child may have autism or another developmental disorder, and to describe some of the resources and services which will be available to their child in that event.

There is no known cure for autism or Asperger’s syndrome. Although many curative treatments have been proposed over the years, and most have been at least somewhat helpful in terms of skill development, they have not cured the disorder. Many treatments do make a difference -- sometimes to a profound degree. Some of the tried and true interventions include speech and language services, appropriate educational placement and therapy, occupational therapy, and behavioral therapy. In some cases certain diets seem to work best for certain children. It is important to consult your child’s physician if you are considering significant dietary changes. A brief case scenario was presented to demonstrate one possible outcome for a child diagnosed along the autistic or pervasive developmental delay spectrum. In some instances the degree of impairment is far more significant, and hence, skill development less optimal. In other instances the degree of impairment may be negligible by adulthood.




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