Early Observations of Autism

Dr. Leo Kanner of John Hopkins University described autism for the first time in 1943. He used observations of eleven children in his care. These children had withdrawn from human contact as early as the age of one. They also exhibited the following symptoms:

• good memory
• echolia
• hypersensitivity to stimuli
• impaired social interaction

In 1944, Hans Asperger wrote about a group of children that he referred to as autistic psychopaths. They exhibited the same symptoms that were observed by Kanner (as listed, above). In addition, he added that these children lacked the physical skills shown by other children of the same age. Asperger’s work did not become well known until the late 1980s when his book was translated into English.

Another individual by the name of Bruno Bettelheim directed the Chicago based Ortho-Genetic School for children with emotional problems. He wrote about three therapy sessions he conducted. Through these sessions, he labeled the children as autistic and believed that the coldness of their mothers was to blame. It should be noted that the parents were not allowed to be involved, whatsoever, in the therapy.

It wasn’t until the 1960s that autism was recognized as a separate syndrome. It was proven to be lifelong, separating it from other conditions such as mental retardation and schizophrenia. From the 1960s through the 1970s, treatments for autism focused on medications such as LSD, behavior change therapy, and electric shock. From the 1980s and 1990s, behavior therapy became the treatment of choice, along with use of controlled learning environments.

In looking at the line plot below, the number of autism cases has been on a dramatic rise since 1992, when the number of cases was around 15,580. We see a rise to 259,705 cases in 2006. It wasn’t until the the early 1990s that special education programs were required to report how many children receive services for an Autism Spectrum Disorder (ASD), which some feel is part of the reason the numbers you see below rise so drastically.

Based on 2007 statistics from the Center of Disease Control and Prevention, 1 in 150 births are autistic children, equating to 1-1.5 million autistic Americans. We are seeing a 10-17% annual growth rate in new cases.

Current Research

As doctors and scientists continue to delve into autism and seek to unravel its mysteries, ongoing projects at the Autism Research Centre are available to help in the process.

Individuals with Disabilities Education Act (IDEA)

Determining Eligibility

The IDEA was established to improve the academic options for children with disabilities. A child is eligible for services under IDEA if they are diagnosed with a qualified disability and because of that disability, need special education services. There are 13 disability categories, and to qualify, a child must match the criteria in one of those 13 categories. The 13 categories are:

1. Autism
2. Deaf-Blindness
3. Hearing Impairment
4. Mental Retardation
5. Orthopedic Impairment
6. Speech or Language Impairment
7. Visual Impairment
8. Deafness
9. Emotional Disturbance
10. Learning Disability
11. Traumatic Brain Injury
12. Multiple Disabilities
13. Other Health Impairment

In addition to being in one of the 13 categories, a parent also has to show that the child’s education is adversely affected by the disability. If your child has maintained decent grades in school, the school may not see a need for special education services. However, as a parent you must also see that your autistic child’s socialization, language skills, and level of communication are being addressed. Requesting an evaluation is the first step in determining eligibility.

Steps for Gaining Access to Services

Your child’s eligibility will be determined by a team of professionals from the school. This team may include the child’s teachers, principal, school counselors, school psychologist, doctors, and of course you, the parents. Your particular school may already have a team in place to complete this step in the eligibility process and may have a pre-determined plan to follow. The steps may include:

• First, parents or school personnel refer the child for evaluation. 
• The team will address the areas of concern and develop a plan for assessing the child.
• The child will receive a comprehensive evaluation by the team to provide the necessary information about the areas of difficulty. The assessment can include a combination of observations, interviews, and specialized testing.
• Upon completion of the evaluation, the team will meet to discuss whether your child will benefit from an IEP (Individualized Education Program). All members involved with the process, including parents, will be present to study the results of the assessment and develop a plan that is appropriate for your child’s individual case.
• During this meeting, it will be determined if your child meets the eligibility requirements for special education under one of the 13 categories of IDEA.
• If the child is eligible, an IEP will be developed. This is a plan designed specifically for your child and includes the necessary accommodations that will help him/her be successful in school.
• The plan will take effect once parents agree with the steps laid out in the IEP.

Individualized Education Plan (IEP)

It is the school’s responsibility to ensure that a child’s IEP is being carried out just as it was written. Parents should always have a copy of the IEP, as should each teacher and service provider that works with the child. This way, everyone involved knows his/her responsibility within the plan. As part of the 2004 Reauthorization of the Individuals with Disabilities Education Improvement Act, parents must now be included as members of the group that “makes decisions on the educational placement of the child”.

A child with an IEP has annual goals set and these are measured and reported to parents. This allows all involved to gauge if the student is making progress toward the goals. The IEP itself must be reviewed by the IEP team at least once a year. Parents do have the right to request that this be done before the annual date. When this meeting is held, parents and all team members must be invited to attend. Parents are encouraged to suggest changes in either the goals presented or the means by which these goals will be met. If parents are not satisfied, they may request additional testing or evaluation, or can ask for a due process hearing. Should all avenues be exhausted and parents still feel their child is not succeeding under the current IEP, they have the option to file a complaint with the state education agency.

An autistic child on an IEP must be reevaluated at least once every three years; this process is called a triennial. This is to determine if the child stills meets the requirements as a “child with a disability” as defined in the IDEA. Parents and teachers should not hesitate to request that this evaluation take place sooner if they feel conditions require more immediate action.

When the correct steps are taken to develop and implement an IEP, it is an invaluable tool for autistic children and those who educate them. 

Section 504

Section 504 is a federal law that was established to protect the rights of individuals with disabilities when participating in programs that receive federal funds from the U.S. Department of Education. It is intended to provide a free appropriate public education (FAPE) to students who qualify.

Who is Eligible?

If children do not qualify for IDEA, they may still be able to receive services under Section 504 of the Rehabilitation Act of 1973. A student is eligible for Section 504 if they have a mental or physical impairment that substantially limits one or more major life activities. In the case of an autistic child, the major life activity is education. To determine eligibility, the school must perform an assessment. The assessment process for Section 504 is less extensive when compared to the one performed under IDEA.

How Does a Parent Access Services Under Section 504?

The process begins the same as IDEA with a referral to the school’s special education team. This request can be made by the child’s parents or teachers. If the team determines that the autism limits a child’s learning, then a 504 Plan is designed to accommodate the educational programs and provide necessary aids and services.

What Happens After the 504 Plan is Written?

Under Section 504, the accommodations made for a student come directly from the regular classroom teacher. Some sample accommodations may include:

• Adjusting the number of homework problems without changing the level or content
• Extended time for test-taking
• A quiet place for the child to work with minimal or no distractions
• Adjust seating arrangements
• Meeting with school counselor

What Do IDEA and Section 504 Have In Common?

Not all autistic children will qualify for services under both Section 504 and IDEA. The programs are both set up to meet the same goals. Under both programs, public schools are required to provide free and appropriate education under the least restrictive environment. Schools need to provide accommodations to keep the autistic child’s educational process as normal as possible. Both programs also provide opportunities for parents to request that changes are made to the plan their child is following.

Which Plan Should We Choose?

Ultimately, the decision as to which program to follow is determined by the school and parents. Some autistic children will perform better under the IDEA because it offers a more extensive assessment process and provides the IEP for documentation. There are also more services available to students under the IDEA. However, if it is determined that your child does not qualify for services under IDEA, Section 504 is definitely a beneficial option. Because the assessment process is less involved, Section 504 is easier to implement and provides opportunities within the child’s regular classroom.

Much of this information was gathered from the Children and ADHD website. These same educational supports are in place for children diagnosed with attention deficit hyperactivity disorder.

Helping Siblings to Adjust

Even if you do your best to explain autism to your children and prepare them for some of the ways their autistic sibling is different than others, there may still be times when they have questions that you cannot answer. Here are some suggestions to help non-autistic siblings adjust and feel at ease with how your family functions on a daily basis.

• Family therapy may be a good option to give siblings an outlet for voicing their concerns and feelings. They may feel that they don’t always want to come to their parents for fear of giving them an even heavier burden to bear. Let them know that their feelings are welcome and give them permission to voice their opinions in a fair and reasonable way.
• Be open and honest with your family about your autistic child and any issues that may arise. Your other children will sense if you are upset or uneasy about something; it is better if they get an explanation from you instead of coming up with their own.
• Establish structured playtime between the autistic child and siblings. Choose activities that they all enjoy which will not cause tension or difficulty for the autistic sibling. Help them play together by being involved in the playtime and modeling how to interact with each other.
• Take your non-autistic siblings out for special meals or activities on their own. The autistic child often is the center of attention, and siblings need to feel that they too can be the focus of your attention.

Sibling rivalry is abound in all families, but it can become even more of an issue if there is an autistic child in the home. If siblings feel that they must constantly battle with the autistic child for the attention of the adults in the home, this may build resentment. Use the tips, above, to decrease the possibility of this happening in your home. Get your non-autistic children involved with an autism fundraiser or awareness activity, which may help them stay connected with their autistic sibling and help further their understanding of the condition that afflicts their loved one.

What We Know

Autism is a developmental disability that is a brain-based, neurological condition. It is part of the family called Autism Spectrum Disorders, or Pervasive Development Disorders (PDDs).  Autism is usually diagnosed before the age of three, and is diagnosed four times as often in boys than in girls. Statistics show that 1 in 166 children are diagnosed with an autism spectrum disorder. This number has grown significantly over the last three decades. It is the fastest growing developmental disability with an annual growth of 10-17%. 

What We Don’t Know

Each case of autism proves to have a different pattern. Autism is biologically based, but its exact cause is still a mystery. Autistic children have a genetic make-up that leaves them predisposed to autism, making them susceptible to a wide variety of triggers. It is here that the mystery lies. Researchers cannot pinpoint an exact trigger. There is also debate on whether there is one cause for autism. Some scientists feel that there is only one cause, while others feel that autism has multiple causes. 

Despite all of the questions and uncertainty, because of the dramatic rise in autism cases it will continue to be on the forefront of research. This is leading advocates to push for increased funding for research into autism and other neurological conditions. New techniques for studying the brain may lead researchers to answers that could help improve treatments and interventions.

Employment and Supervision

There are employment agencies such as Association for Persons in Supported Employment that can work to place autistic adults into jobs where they can be successful. By pairing individuals with employment that fits their disability and their capabilities, adults with autism can lead more independent lifestyles. At least 33% of autistic adults can achieve some level of independence. By living in residential treatment programs, these individuals can find the level of supervision that best fits their condition. Autistic adults whom are high-functioning can live more independently. While most adults with autism may never be able to live independently, interdependent living is an appropriate goal. With interdependent living, autistic adults rely on others although they are capable of these basic living skills:

• Getting along with others. Adults with autism should be able to get along with those around them, such as neighbors and colleagues, without conflict.
• Keeping their living space clean. Being organized and keeping personal space clean makes finding important items easier.
• Managing both structured and free time. Complete tasks on a time schedule and keep track of responsibilities like paying bills or preparing meals.
• Budget money. Being able to keep a simple budget will help autistic adults manage their money so that basic needs may be met.
• Prepare and eat nutritious meals. Eating well keeps the body and mind healthy.

In order to prepare your child for independence initiate these life skills at a young age. By adapting these skills to your autistic child’s age and ability level, you can begin to build a skill set that will help make them more productive, independent adults.