Intervention and therapies.

Just decades ago, many people with Autism were placed in institutions. Professionals were less educated about Autism than they are today, and specific service and support were largely non-existent. The picture is much clearer now. With appropriate service and support, training and information, children who experience Autism will grow, learn, and flourish, even if at a different developmental rate than others.

There are many treatment and education approaches that can address some of the challenges Autistic individuals may experience. Intervention can help to lessen disruptive behaviors, and education can teach self-help skills for greater independence. But just as there is no one symptom or behavior that identifies people with Autism, there is no single treatment that will be effective for everyone who experiences Autism. Individuals can use the positive aspects of their condition to their benefit, but treatment must begin as early as possible and focus on the individual’s unique strengths, weaknesses, and needs.

 

Throughout the history of the Autism Society, parents and professionals have been cofounded by conflicting messages regarding which treatment options are appropriate for Autistic children and adults. As each person responds to treatment differently, we cannot endorse any one treatment or program. Families should educate themselves about all options and choose what they feel is in the best interest of their child and family, based on their experience and what resources are available.

Understanding Autism

This section provides an overview of many available approaches, not specific treatment recommendations.

Keep in mind that the word “treatment” is used in a very limited sense. While typically used for children under age three, the approaches described here can be included in an educational program for older children as well.

It is important to match a child’s potential and specific needs with treatments or strategies that are likely to help them reach established goals and greatest potential.

 

The Autism Society South Carolina (SCAS) does not want to give the impression that parents, caregivers, or professionals will select just one treatment from a list. A search for appropriate treatment must be paired with the knowledge that all treatment approaches are not equal – what works for one will not work for all. The basis of a treatment plan should come from a thorough evaluation of the child’s strengths and weaknesses.

Making informed decisions.

The Autism Society South Carolina (SCAS) affirms that each person who experiences Autism is a unique individual. To the maximum extent possible, informed decisions should be made by the Autistic individual and their family members in partnership with a multidisciplinary team.

The selection of current evidence-based intervention practices should be guided by objective assessment, goals, and outcomes. Services and support should be delivered with fidelity by qualified and appropriately trained professionals. All services should promote self-determination, enhance inclusive community engagement, and result in improved quality of life. Abuse of any kind is not acceptable.

No single service or intervention is likely to meet the needs of every Autistic individual. Each person should have broad and equal access to high quality, individualized support and services. Selection of a program, service, or intervention method should be based on a comprehensive assessment of the person’s abilities, needs, and interests. Services should be outcome-based to ensure they meet the individualized goals of the Autistic person.

SCAS expects that individuals with Autism will have dignified, productive lives and reach their fullest potential through access to appropriate education, employment, community living opportunities, medical care, mental health services, and family support.

Evaluating options.

After identifying available treatments, interventions, therapies and other services, you’ll need to choose which ones are best for you or your child. Here are some considerations to help you make your decision:

  • What is the purpose of this theory/practice?
  • What do I have to do to benefit from the theory/practice, and what are its lasting effects?
  • For how long must my child be involved in this theory/practice to benefit from it?
  • Is there any physical or psychological harm this theory/practice could do to my child?
  • What are the personal costs of time and money that I will have to endure, and can I be reimbursed for these expenses?
  • How do I know that the costs of this theory/practice are fair and reasonable?

 

  • Are the theoreticians or practitioners competently and appropriately trained and prepared to implement the provisions of the theory or practice? How is their competence assured?
  • What steps will be taken to protect my privacy?
  • Are there any legal actions, current or past, against promoters, consumers or practitioners of the theory/practice?
  • How will the effects of this theory/practice be evaluated?
  • By choosing this theory/practice, what alternatives (proven or unproven) am I not pursuing?
  • Does this approach mesh with my child’s overall program?
  • Who has this theory positively benefited, and under what conditions?

The National Institute of Mental Health suggests the following list of questions to ask when planning a treatment program:

  • How successful has the program been for other children?
  • How many children have gone on to placement in a regular school and how have they performed?
  • Do staff members have training and experience in working with children with Autism?
  • How are activities planned and organized?
  • Are there predictable daily schedules and routines?
  • How much individual attention will my child receive?
  • How is progress measured? Will my child’s behavior be closely observed and recorded?
  • Will my child be given tasks and rewards that are personally motivating?
  • Is the environment designed to minimize distractions?
  • Will the program prepare me to continue the therapy at home?
  • What is the cost, time commitment, and location of the program?

Guiding principles for selecting interventions and therapies.

 

As the number of individuals being diagnosed with Autism has increased, so too have medical, educational, and clinical options. When making informed decisions about clinical and therapeutic options, family members, professionals, and individuals who experience Autism often find choices to be complex and confusing.

The overwhelming amount of information available via the internet, social media, and news media, which highlight stories about the successes of proven and unproven treatments, makes these decisions even more challenging. In response, we have created the following guiding principles for those who need to make choices among the vast array of available service and support options.

1

SCAS recognizes the wide diversity of the Autism experience in terms of needs and support across the lifespan. This makes it clear that there is no one-size-fits-all approach to address the needs and goals set for all individuals with Autism.

2

A wide range of therapies, support, and services should be equitably available to all people with Autism. Professionals must be proactive in ensuring that all Autistic individuals receive effective interventions without discrimination and regardless of where they live, their racial/ethnic status, their economic conditions, or other factors that might otherwise limit equitable access.

3

Individuals with Autism and their family members should critically evaluate the information and services highlighted on various websites. To obtain a balanced perspective, ensure information is from objective sources, including the Autism Society South Carolina and other Autism Society affiliates. Remember that those providing various services may genuinely want to help your child but may have additional motives for recruiting your business.

4

Individuals with Autism and their family members should be considered equal partners in treatment. Family members and individuals should understand the process for developing and approving all interventions and therapies or clinical treatment plans. Parents and individuals should be encouraged to ask questions and request detailed explanations as well as decline any interventions they feel will have the potential to cause harm.

5

Individuals with Autism and their family members should weigh the impact of the chosen services and support on the entire family along a variety of dimensions, including fit within the family structure, time commitment, safety risk, financial impact, and other important factors. Autistic individuals and their family members know themselves, their child, and the needs of their family best. They are the ultimate decision-makers regarding medical, mental health, educational, vocational, and other person-centered support and services.

7

Individuals with Autism and their family members should expect clear communication about progress, which is typically documented using data. All practitioners should present data in a format that is understandable and that shows whether there is improvement.

8

Treatment providers must respect the dignity of the individual with Autism. Treatments should never be demeaning, embarrassing, or aversive. Autistic individuals and their family members should never hesitate to question practices that they don’t understand or that make them feel uncomfortable. Effective professionals are those who can establish a positive rapport with Autistic individuals and their families. Autistic individuals and their family members should be prepared to terminate professional relationships when they are harmful or not productive.

9

All providers must recognize and respect the unique perspectives of individuals with Autism and their family members. Recommendations are best offered in an informative and respectful manner. Autistic individuals and their family members should never feel pressured, bullied, or manipulated by professionals.

10

All providers who make grandiose promises about outcomes or “cures” should be viewed with concern and questioned about scientific data supporting their claims. When making these decisions, individuals with Autism and their family members should never hesitate to reach out to neutral parties or South Carolina Autism Society (SCAS)affiliate leaders. It is also appropriate to speak with others who have used the services under consideration.

11

All providers should communicate with words and language that are readily understood by individuals with Autism and their family members. If they do not understand what professionals are saying, they should not be embarrassed to ask the provider to explain in simpler terms.

12

Recommendations for interventions should be based on the best scientific evidence available. Medical and educational therapies use different types of research to determine effectiveness. See the resources below related to evaluating research and recognizing evidence-based practices.

13

For medical treatments, data from clinical trials is required for medications that are prescribed by a doctor to ensure safety. A family doctor should be consulted when considering alternative treatments.

14

For educational interventions, the term “evidence-based practice” is used to distinguish interventions that researchers have shown to be effective through an accumulation of scientific evidence from multiple, high-quality research studies.

15

SCAS values services and support that maximize quality of life in the individual’s homes and communities. Interventions, therapies and services for individuals with Autism should be delivered in the most inclusive settings possible.

The South Carolina Autism Society is optimistic about the future for individuals with Autism and their family members. There is an abundance of ongoing research that has great promise for understanding the causes of Autism and identifying evidence-based options for intervention and support. As this research delivers usable products, programs, and protocols, it will help improve outcomes for Autistic individuals. Selecting services and support will always be an important and challenging role for families.

Most Autistic individuals do make progress over the course of their lifespan. This progress is enhanced with effective intervention and support. While none of us can say with certainty what an individual will be able to do in the future, the South Carolina Autism Society knows that each person will progress at a different pace and that many factors affect progress.

The health of the individual with Autism and family members, behavioral challenges, quality of program, and ability to carry over learned skills to the home or community all influence how quickly progress is made. We hope these guiding principles will help in the journey.

For more information on evidence-based practices and interpreting research, visit the following websites: