Autism in Teens

Briefly describe a specific question, or set of related questions, about a health care test or treatment that this program should consider.

The first wave of children with autism since rates started to skyrocket are beginning to exit the school system yet no one has studied what we can learn from this group (many of whom did not have intensive early intervention), what to do for them going forward, how to prepare for the increased number of people with autism who will soon be adults?

Does your question include a comparison of different health care approaches? (If no, your topic will still be considered.)

yes

If yes, explain the specific technologies, devices, drugs, or interventions you would like to see compared:

There are many drugs and interventions parents have tried, e.g, chelation, restrictive diets, drugs for all kinds of other things. Parents need to know how to target their efforts but have no guidelines to use as they make their decisions regarding limited time and money.

What patients or group(s) of patients does your question apply to? (Please include specific details such as age range, gender, coexisting diagnoses, and indications for therapy.)

Teens-adults with autism

Are there subgroups of patients that your question might apply to? (For example, an ethnic group, stage or severity of a disease.)

This would apply to both higher functioning and lower functioning people on the autism spectrum.

Describe the health-related benefits you are interested in. (For example, improvements in patient symptoms or problems from treatment or diagnosis.)

Improve quality of life from treatments that are supported by actual research that has been replicated.

Describe any health-related risks, side effects, or harms that you are concerned about.

Side effects of drugs that were not developed specifically to help people with autism.

Appropriateness for EHC Program

Does your question include a health care drug, intervention, device, or technology available (or likely to be available) in the U.S.?

yes

Which priority area(s) and population(s) does this topic apply to? (check all that apply)

EHC Priority Conditions (updated in 2008)

• Developmental delays, attention-deficit hyperactivity disorder, and autism

AHRQ Priority Populations

• Individuals with special health care needs, including individuals with disabilities or who need chronic care or end-of-life health care

Federal Health Care Program

None

Importance

Describe why this topic is important.

I have a son with autism and know first hand how expensive and time-consuming care is. He was late to be diagnosed compared to today's standards and I have always wondered what to do now since those critical early intervention years are gone. I also volunteer much of my time to helping other parents understand autism and advocate for their children. I see many families struggling with not knowing what to do for their kids even those who are affluent and able to afford most treatments. They simply don't know what to avoid.

What specifically motivated you to ask this question? (For example, you are developing a clinical guideline, working with a policy with large uncertainty about the appropriate approach, costly intervention, new research you have read, items in the media you may have seen, a clinical practice dilemma you know of, etc.)

I heard a speaker from Yale say how few large double blind placebo studies there are and was surprised. I thought that the last 10 years had brought more funds to allow for such large scale studies. I can't understand what will happen to those who are about to exit the school system and there are no programs for them with therapies that are proven effective. Many families can't afford to keep a family member with autism at home. There are no good answers right now.

Does your question represent uncertainty for clinicians and/or policy-makers? (For example, variations in clinical care, controversy in what constitutes appropriate clinical care, or a policy decision.)

yes

If yes, please explain:

People with autism were institutionalized years ago. When deinstitution happened, many of the same people wound up on the street or incarcerated. Even poor programs have waiting lists now because of the increased numbers of people who are diagnosed with autism. What will happen to these people and how do we protect them is a policy question.

Potential Impact

How will an answer to your research question be used or help inform decisions for you or your group?

Instead of trying many treatments that actually are not supported by research, parents will be more focused, programs will be developed that offer the treatments know to work and programs offerring the treatments that are proven not to work will no longer dupe parents into spending their critical time and limited funds.

Describe the timeframe in which an answer to your question is needed.

As soon as possible.

Describe any health disparities, inequities, or impact on vulnerable populations your question applies to.

People with developmental disabilities are much more likely to be victims of crime and abuse. We need to protect this vulnerable population by developing programs that are safe and effective so that they can become as productive as possible and achieve some quality of life.

Nominator Information

Other Information About You: (optional)

Please choose a description that best describes your role or perspective: (you may select more than one category if appropriate)

Instead of trying many treatments that actually are not supported by research, parents will be more focused, programs will be developed that offer the treatments know to work and programs offerring the treatments that are proven not to work will no longer dupe parents into spending their critical time and limited funds.

Are you making a suggestion as an individual or on behalf of an organization?

Individual

Please tell us how you heard about the Effective Health Care Program

internet