The OARacle
	The Monthly E-Newsletter of the Organization for Autism Research "Research and Resources That Help Families Today!" www.researchautism.org

August 2004

Teaching Students With ASDs: One Educator’s Experience

by Jennifer Ryan

It’s the beginning of the school year. You’ve gotten your classroom ready with posters hanging on the walls, supplies are set up on the students’ desks, and you’ve even managed to plan out the first day of class. Then, you get your class list and find out that you have a student who is new to the school AND has autism. You have no idea how to handle and, really, how to teach a child with an autism spectrum disorder (ASD). If you had time, you could go onto the Internet and find the many sites about autism, check out books, talk to other educators about their experiences, or even meet with the child and the parents. Luckily, OAR’s soon to be released “Educator’s Guide to Autism” has done most of that work for you. It was written in collaboration with parents and educators and allows educators to quickly access information about teaching methods that help students with ASD learn and socialize at school. I reviewed the Guide earlier this year and plan to have a copy of it in my classroom this fall. I only wish I had one when I had my first student with autism.

What I know now about autism, I learned from first-hand experience, when I taught my first student with autism in 2001. I was fortunate enough to know Gabriel was coming to my class six months before the school year began. Between the time I found out and the start of the school year, I observed him in the special education class he was attending. He was able to visit my regular education classroom with his special day classroom aide several times.

From his first visit, I gained insight into the world of autism. When he came into the room, he looked at the kids and I introduced myself. I asked if he liked my classroom and whether he was excited about being in my class the following year. He responded, “Not really and I am not going to be with these children. There will be other children here.” I thought to myself, “Whoa! Not all six-year-olds notice those differences.”

He sat in the back of the room and watched me teach. A little while later, I noticed he was under the table. I approached him and asked if he was going to stay under there long. He responded, “I am just wondering how you are going to get me to come out.” I knew he wasn’t being smart; he was simply exhibiting the typical behavior of a young student with autism. After thinking about it, I got on my hands and knees and went under the table with him. I told him, “I don’t know. I’ll have to think about it.”

He was shocked, and so was I! And we came out from under the table together. It was important for him to know that I wouldn’t always have the answers, but I would try to get them. This was the beginning of my understanding of needing to “think outside of the box;” and I learned that sometimes to think outside the box, you might want to go inside.

There were many other lessons I had to learn once Gabriel became a full-time student in my classroom. Among these was successfully creating a positive classroom environment, an issue the "Educator’s Guide" discusses. As the days of the school year passed, my students became closer than I could have hoped for, learning to understand and tolerate differences in each other as well as their peer with autism. As described in the “Educator’s Guide,” children with ASDs often have uneven skill acquisition. My typical students came to understand that some students learn differently and just because one student needed to “take a break” didn’t mean that they all needed to. The students made sure that everyone was on task when they needed to be and if their classmate with autism needed to walk around, then they accepted that it was okay for him and not for them. They knew that he would still have to get his work finished and it might even take him longer.

It also taught Gabriel that he might miss out on something if he was being stubborn and couldn’t get his work finished. All of my students were subject to the same rules and consequences. It made everyone, including my student with autism, feel equally treated. I taught my subjects to all ability levels and Gabriel fell into the levels (high, average, low) I had already established.

My typical students also learned that children with ASDs don’t have the same social skills or interests as other children. It was quite normal for Gabriel to walk around the playground alone at recess. Some of the students in the class saw this and told me about it. As a class, we created a “Friend of the Day” program. The friend helped Gabriel join in an activity and explained the rules to him. If he didn’t want to play or wanted to be alone, that was fine, but he usually played — and he couldn’t wait to tell me about it. It was great for him to interact with his peers and helped the peers learn how to include and not exclude others.

I learned a lot from that first experience with Gabriel that has benefited not only how I teach students with autism, but how I work with all my students. Now, even if I don’t have any special needs students in my classroom, I take each day as a new day. I will sometimes step out of my normal teaching practices and think about whether my students are learning what they need. I used to plan my teaching day and expect everyone to complete everything at his or her own level. Now I realize that it is the process through which we complete things that is important. I make sure that the class watches out for each other and that everyone has the opportunity to feel included.

Most significantly, I learned that I could be a better teacher by learning from my students with ASD and working with their parents. The parents are often very attuned to their children’s differences and, through the years, have developed their own accommodations. As an educator, you are not only teaching their child, but also teaching them how to teach their child. Some parents really want the teacher to give them help and resources. If you open the lines of communication with your parents at the beginning, they will perhaps be more open to trying new ideas that you might have for their child.

For teachers, administrators and others who work with students with ASDs, the ”Educator’s Guide” will provide strategies for working with families. A companion “Parent’s Guide” also provides resources for parents on how to cultivate relationships with teachers and administrators. I would strongly recommend the “Educator’s Guide” for all teachers, even if they don’t have students with ASDs. Some children may have a few traits that are “different” and the Guide gives teachers and parents some resources and ideas on how to accommodate those traits and how to work together to educate their child. This fall, teachers no longer have to rely solely on the trial-and-error method of successfully teaching a child with ASD. The “Educator’s Guide” will help teachers learn the characteristics of children with ASD that affect them at school and how to structure their classroom to accommodate them. All in all, it will provide educators with the tools they need to build a positive classroom environment and ensure a successful school year. I wish you all good luck as this school season begins.

Jennifer Ryan is currently a fifth grade teacher in the Millbrae School District in California where she has been teaching for seven years. She enjoys teaching all students especially those with diverse learning needs. Jennifer lives in the San Francisco Bay Area with her husband and 2-year-old daughter.

NEWS

NIMH Autism Program Director
Joins Scientific Council

Ann Wagner, Ph.D.

OAR proudly announces the appointment of Ann Wagner, Ph.D., from the National Institute of Mental Health (NIMH) to the Scientific Council.

Wagner, Program Director of the Autism and Pervasive Developmental Disorder Interventions Research Program in the Division of Services and Intervention Research at the NIMH, is the first autism professional from a federal agency to serve on the 13-member Council. She joins a group of leading autism and medical professionals serving in private practice, academic institutions and educational facilities.

Currently in charge of managing the NIMH’s extramural research portfolio for autism treatment and rehabilitative interventions, Wagner is working to improve the quality and broaden the scope of autism research at the NIMH. She plans to supplement the breadth of knowledge of her fellow Council members by providing information about ongoing federal research and federal funding priorities. “I can bring ideas about where the field is in terms of autism interventions research and make suggestions about what needs to be done to fill in the gaps,” she explained. “That will help OAR set its research priorities and direction.”

The appointment on the Scientific Council also has clear advantages for her too, Wagner said, explaining that it will be “beneficial to be involved with professionals and people for whom our research has a direct impact. It will also serve as a way for me to get information on ways the NIMH might be more effective.”

Before coming to the NIMH in 2001, Wagner served as the co-director of an autism program at the Children’s Hospital in Washington, D.C., which provided evaluation and treatment services for children with autism spectrum disorders and their families. Currently, she serves as the executive secretary of the Interagency Autism Coordinating Committee (IACC), which is a forum for sharing of information and coordination among federal agencies with autism-related activities.

Wagner will jump right into her OAR duties, speaking at the upcoming Applied Autism Research and Intervention Conference in October and serving as a member of the Final Review Panel for OAR’s 2004 Applied Research Competition.

“Ann brings experience and insight from the federal perspective, which will help OAR more effectively define its research interests,” said Peter Gerhardt, Ph.D., Chairman of the Scientific Council. “This relationship will also allow OAR to achieve a better balance of research programs with the NIMH.”

National Combined Federal Campaign Welcomes OAR

This fall, federal employees and military service members around the world will be able to make donations to OAR through the Combined Federal Campaign (CFC).

The annual fundraising drive, which takes places over a 6-week period and is held throughout the country anytime between Sept. 1 and Dec. 15, allows federal employees to contribute to eligible local, national and international charities. This year marks OAR’s first as a qualified national charity under the Health and Medical Research Charities of America.

Established in 1961 under an executive order signed by President John F. Kennedy, the CFC provides a single, unified annual campaign through which federal employees and service members can support a variety of charitable organizations through payroll deduction. Administered by the Office of Personnel Management in Washington, D.C., the CFC campaign raised about $248 million last year.

The CFC offers flexible options for employees, including one-time or monthly payroll deductions, which can be as low as $1, as well as the choice of giving to one or more charities. Nearly four million federal employees and military personnel are able to contribute to the charities of their choice during the annual charity drive.

“We have no idea what this campaign will produce,” said OAR Executive Director, Mike Maloney, “But our goal is to raise $60,000, enough to fund two applied research studies when we receive the finds in 2005.”

Special Section: RUN FOR AUTISM Training for the MCM 8K: What You Need to Know Are you interested in participating in this year’s RUN FOR AUTISM but are not ready to take on a marathon? Consider running the Marine Corps MarathonTM 8K race, which will be held the same day as the Marathon. You can enjoy the unique atmosphere of Race Day, be part of OAR’s RUN FOR AUTISM Team and help raise money for autism research. The 8K race replaces a 5K event held last year and is limited to 1,800 runners. While the 3.2-mile event required runners to demonstrate a good level of fitness, it was a distance that even the occasional runner could take on without too much extra preparation. The 8K, an almost 5-mile race, on the other hand will challenge runners more. According to frequent Runner’s World contributor and author of several books on running, Hal Higdon, novice runners should prepare for an 8K race by following an eight-week training schedule. This means starting today if you want to be at your best level of fitness on October 31. Higdon recommends the program to people without major health problems who are in reasonably good shape and are active joggers or walkers before starting the schedule. The weekly schedules consist of six parts — stretch and strength, running workouts, cross-training, rest, long runs and walking. On Mondays of each week, Higdon advises runners to do some stretching and strength training, which will serve as a day of rest following long runs on Sundays. The workout consists of proper stretching of running muscles followed by push-ups, pull-ups, use of free weights or weight lifting machines. Higdon said runners should lift lower-pound weights with a high number of repetitions rather than use heavy weights. Strength training should also be incorporated in the runner’s Thursday workout or another day during the week. Beginning runners should also schedule three running workouts during the week, according to the plan. The workout should not focus on the runner’s speed, but if he/she completes the suggested distance, which are two-mile workouts in the beginning that progress to three–mile runs during the week along with longer runs that progress from two miles to 4.5 miles on Sundays by the end of the eight week period. Like other running experts, Higdon recommends runners run at a pace that allows them to talk without overexerting themselves. Two days a week, runners should do a cross-training activity such as swimming, cycling, walking or any other form of aerobic exercise. The type of activity, whether it is paired with some strength training or jogging, is up to the runner, but the intensity should be moderate. Higdon said cross-training days should be considered easy days that allow runners to recover from their running workouts during the rest of the week. A total break from running is important as well. Giving muscles time to recover will allow them to build in strength. Higdon’s program builds in a day of total rest each Friday with moderate rest on Mondays, which are designated stretch and strength workout days. On Sundays or other times convenient for longer-timed runs, Higdon’s program prescribes long runs, starting at 2 miles the first week and adding a half-mile almost every week. Speed should not be a concern, he says, as there is no advantage to going fast during these long runs. Last, Higdon recommends walking at any time during the running workouts. “Walking is an excellent exercise that a lot of runners overlook in their training,” Higdon said. “Nobody cares whether you run the full 8K; they're more concerned that you finish.” For more information about Hal Higdon’s running schedule, visit his Web site. To register as part of OAR’s RUN FOR AUTISM Team for the 8K race, click here. Registration will end October 23, 2004. Like the Runners for Autism in the Marathon, OAR’s 8K runners will also raise funds for autism research. The individual goal for 8K runners is $250. The registration cost is $50, which includes the $35 MCM 8K entry fee and $15 for administrative costs. All 8K runners are invited guests to the Runners’ Recognition Dinner the night before the Marathon and will receive a RUN FOR AUTISM t-shirt and Race Day memento for being on the team. For more information, please contact Allison Chance by e-mail or by phone at 703-351-5031. Maryland Runner Launches Radio Fundraising Campaign Tom and Thomas Logue Finding an innovative way to raise funds for the RUN FOR AUTISM is something all runners struggle with as race day looms closer. The help of family and friends with this effort is often invaluable and in one father’s case, proved to be the most beneficial of all. Tom Logue, a Columbia, Md. father who is running in the RUN FOR AUTISM in October, received a boost from one of his biggest fans, his mother, who lives in his hometown of Williamsport, Pa., most famous as the home of the Little League World Series. Through a mass distribution e-mail his mother recently sent out, the news editor of a local radio station heard about his fundraising effort and decided to do a story on Logue. Last month, WRAK-FM also interviewed Logue during a one-hour talk show giving him an opportunity to promote his fundraising effort and promote a greater awareness of autism. Logue’s son, 8-year-old Thomas, was diagnosed with PDD-NOS and is about to start third grade in a classroom with typical peers. The RUN FOR AUTISM marks Logue’s third MCM run but the first in the name of autism. This time, the 43-year-old Navy reservist aims to come close to the 3 hour, 20 minute time he set in the 1989 MCM. With a goal of 3 hours and 30 minutes, he is hoping to meet the personal challenge set by an anonymous donor, who has pledged to donate $50 for every minute Logue finishes the marathon under four hours. “If I can do that, it would translate into $1,500,” said Logue. Logue also has another challenge to meet — another anonymous donor has pledged to match dollar for dollar any amount he raises over $1,000.00. So far, his goals keep rising. With over $5,000 in donations already, Logue has reset his goal to $6,000. His positive attitude toward raising funds and autism awareness has spread throughout his family and prompted several of them to donate or help in his effort. Among that group is his wife, Patti, who has helped canvas their neighborhood to tell neighbors about Tom’s marathon run for autism and his fundraising effort. “I admire Tom and I try to be as supportive as possible,” she said. “[Fundraising] for something like this makes you feel like you’re not alone in your struggle and you’re doing something useful.” Her husband agrees. “I feel like I’m taking a much more active role in broadening awareness and raising funds for applied research,” he said. Though he has a hectic schedule as a senior analyst at the Johns Hopkins Applied Physics Lab in Columbia, Md., combined with his Navy reserve duty one weekend per month and teaching duties as an adjunct professor at a local community college, Logue fits running in during the morning hours. “It’s a challenge,” he said, “but thinking about Thomas and some of the other kids I know helps me get through.”

RESOURCE

Mental Health for Individuals with ASDs

Note to readers: In each issue of The OARacle, we provide a helpful resource on a topic of interest within the autism community. This month's article focuses on how to diagnose mental illnesses in individuals with autism spectrum disorders. Special thanks to Valerie Gaus, Ph.D., a New York-based licensed clinical psychologist, for her contribution.

Valerie Gaus, Ph.D.

by Valerie Gaus, Ph.D.

In recent years, mental health issues have gained more attention with an estimated 54 million people in the nation suffering from mental disorders. According to a 2001 study by the World Health Organization, mental health ranks first in terms of causing disability in the United States, Canada, and Western Europe (WHO, 2001). The study also found that mental illness — including depression, bipolar disorder, and schizophrenia — accounts for 25 percent of all disability across major industrialized countries. For individuals with autism spectrum disorders (ASDs), the risk of developing mental illness is no less than it is for the general population. For their parents and caregivers, mental illness presents yet another challenge to add to the list of social, educational and behavioral issues they have to contend with. The intent of this article is to address some of the most common questions parents and caregivers pose about mental illnesses in individuals with ASDs, as well as to offer strategies that will allow them to successfully advocate for quality treatment.

1. What is mental health and how is defined for people with ASDs?

Can a person with an autism spectrum disorder be “mentally healthy”? Before that question can be answered, we must define “mental health” and what it means for any person, whether neurotypical or on the autism spectrum. There are endless debates in the psychological literature about this question, but for the purposes of this article, I will offer Dosen’s (1993) idea. Mental health is achieved when one has:

1. limited stress in daily living ;
2. a place of one’s own and a role in his/her surroundings;
3. achieved functioning in accordance with one’s own abilities.

2. Can a person with an ASD have a mental health problem too?

Throughout the lifespan, there are many things that can lead any person to develop a mental health problem. These issues do not necessarily cause mental illness, but simply increase a person’s vulnerability. Some risk factors for the neurotypical population are:

• poor social support,
• presence of central nervous system damage,
• low expectations for success,
• sense of helplessness,
• limited economic resources,
• high levels of stress in family,
• presence of physical disability,
• a chronic medical problem,
• and a family history of mental illness.

Unfortunately, there have not been any thorough studies on the prevalence of mental health disorders in the ASD population. Most studies on “comorbidity,” or the co-existence of a psychiatric condition with ASD, have been based only on case reports (Gillberg & Ehlers, 1998). Preliminary studies have suggested that for some disorders, the incidence is higher for people with ASD than would be found in the general population. For example, Klin & Volkmar (1997) found in a sample of 99 individuals with ASD that 28 percent also met criteria for ADHD, 19 percent showed obsessive-compulsive disorder and 15 percent had depression. DeLong & Nohria (1994) reported a higher incidence of bipolar mood disorder in persons with ASD and within their families than found in the general population. Conversely, psychotic disorders (e.g., schizophrenia) do not appear to be more prevalent in people with ASD (Tantam, 2000), and may even be over-diagnosed in higher-functioning ASD because the individual’s willingness to inappropriately verbalize thoughts can be mistaken as psychosis (Martin, Patzer & Volkmar, 2000).

All of these data must be interpreted cautiously because, as Martin, Patzer & Volkmar (2000) point out, it is difficult at this stage to determine whether symptoms are really part of a separate disorder, or are part of the ASD itself. Also, there is still so much controversy over the precise way in which to define ASD that clear prevalence studies will not be possible until there is more agreement among scientists and practitioners over definitions.

Without accurate statistics, however, we can at least assume that the prevalence of mental disorders would be no less than the general population. In other words, there is no reason to believe that a person with ASD would be less likely than neurotypicals to develop, for example, problems with depression or anxiety. When one examines the above risk-factors, it is easy to imagine how the presence of ASD may actually increase the stress and strain on an individual and his/her family, making mental health needs all the more important for early detection and state-of-art treatment.

3. Do people with ASD have access to the same quality of mental health services that neurotypical people do?

Despite the increased risk mentioned above, individuals with ASD and other developmental disabilities (DD), including mental retardation, cerebral palsy, epilepsy and traumatic brain injury have received inadequate mental health treatment throughout most of the 20th century (see Butz, Bowling, & Bliss, 2000; Dosen, 1993, 2002; MacLean, 1993; Nezu, Nezu & Gill-Weiss, 1992 for more comprehensive reviews). There are many reasons the mental health needs of people with DD were neglected. From the1950s to the early 1970s, the majority of people in the United States with multiple disabilities lived in institutional settings where all treatment and educational needs were inadequately addressed. As people with DD were moved out of institutions and into the community during the 1970's and early 1980's, medical and educational/rehabilitative services improved, but mental health needs continued to be ignored. This is largely due to the fact that mental health professionals were not trained to deal holistically with people with DD and therefore had a very narrow focus on treatment. Clear symptoms of mental health problems were wrongly seen as part of the DD. This type of error is now called "diagnostic overshadowing" (Levitan & Reiss, 1983; Reiss, 1993), which happens when the primary diagnosis of a developmental disorder actually overshadows or masks the presence of a secondary problem. Symptoms that were expressed overtly (e.g., through physical aggression) were labeled as "behavior problems." Symptoms expressed in subtler ways (e.g., withdrawal, changes in sleep habits, gradual skill regression) often went unnoticed.

Treatment for "behavior problems" relied heavily on pharmacological approaches aimed at reducing problem behavior (e.g., "chemical restraint"). They were applied without a comprehensive assessment of the individual’s psychiatric status. Therefore, significant mental health diagnoses and more appropriate drug options were overlooked. Non-pharmacological approaches were limited to "behavior modification" (Alford & Locke, 1984), systems of rewards and punishments designed to reduce problem behavior. Unfortunately, these approaches were sometimes designed by professionals who were not properly trained in Applied Behavior Analysis (ABA) and learning principles. The resulting contingency systems in these cases were not addressing the true function of an individual's behavior. In addition, the types of treatments that were known to help non-disabled people with various mental health problems, especially "talk" therapies, were not being offered to people with DD. For various reasons, people with DD were not viewed as candidates for counseling or psychotherapy.

Thankfully, within the past 10 years, there is a greater emphasis on using multi-modal, multi-disciplinary approaches to treatment planning, which includes consideration of the subjective experiences and information-processing styles of individuals (Dosen, 2002; Gardner & Sovner, 1994), as well as the neurobiology and medical factors behind problem behavior. Also, the old view that psychotherapy is not a viable treatment option for people with ASD and other DD’s has been strongly refuted by several authors (Butz, Bowling & Bliss, 2000; Lynch, 2000; Prout & Strohmer, 1994). For higher-functioning people with ASD, psychotherapy is more naturally considered with these newer attitudes toward people with disabilities (Gaus, 2000, 2002.)

4. How can a caregiver tell when it is time to get a consultation with a psychiatrist?

There can be any number of signs that a person needs a psychiatric assessment. Below are the most common examples:

• There is a dramatic decrease in functioning level compared to the individual’s previous level of ability; a loss of skills.
• There is ongoing maladaptive behavior that disrupts his/her functioning. It persists even after there has been a thorough assessment and multiple assessment-based interventions designed by a qualified applied behavior analyst.
• The individual is functioning poorly despite being on multiple psychiatric medications without a clear rationale or diagnosis.
• The individual is verbalizing increased distress (e.g., reporting feelings of loneliness, anger, suicidal thoughts).

5. Doesn’t it create problems when people have too many labels? Isn’t the ASD diagnosis enough?

Unfortunately, it is still true in our society that having a mental health diagnosis can be stigmatizing in some situations. There continues to be fear and negative attitudes toward disability and mental illness that is largely based on ignorance. In addition, being incorrectly diagnosed can have devastating affects when inappropriate treatment is applied.

In the face of this, it is all the more important to correctly identify a mental health problem when there is one present. Ignoring psychiatric symptoms in an age when psychiatry and neuroscience are making so many advances can be equally devastating if it means a good treatment is withheld from someone who needs it.

The true purpose of diagnosis is not to label people; rather it is to label the behavior pattern that is problematic for the individual. Why is that important? If behavior can be classified, then it can be linked to similar behavior patterns that have been documented by other mental health professionals. If the behavior is similar enough to one of these well-documented behavioral phenomena, then the caregivers and professionals are given important short-cuts to viable treatment options that have already been shown to be helpful for other people with the same problem. Without this, doctors would have to start from scratch and provide “shot in the dark” treatments with every single new patient.

If you are a caregiver involved in the process of diagnosing a mental health problem in a person with ASD, here are some things to keep in mind to avoid stigma:

• You are helping to classify behavior, not the individual.
• Labeling the behavior helps the individual access treatment that has been supported by research.
• Accurately naming the behavior improves the quality of the ongoing assessment process by enhancing communication between professionals on the treatment team.

6. What can a caregiver do to ensure a person with ASD is getting appropriate mental health treatment from psychiatrists and therapists?

Many times caregivers ask how they can tell if their doctor is prescribing the right type of treatment. Though they can’t tell the doctor what to do, parents want to properly advocate when they go to mental health appointments. There are two important principles for success in advocating for good quality treatment:

Knowing what questions to ask
Here are some good quality assurance questions that all caregivers should ask regularly when visiting psychiatrists and psychotherapists (adapted from Sovner & Hurley, 1985):

• Has there been a thorough assessment, including a medical exam to rule out possible medical causes for the problem behavior?
• What is the theory on what is causing the problem behavior?
• What is the psychiatric diagnosis as listed in the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM-IV)?
• What is the psychiatric diagnosis as listed in the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM-IV)?
• What evidence was used to arrive at the diagnosis?
• What are the goals of treatment?
• How will the treatment be carried out?
• Is the treatment plan based on the theory of what is causing the problem?
• Is the treatment based on the research literature; is it similar to the treatment that would be offered to non-disabled individuals who have the same mental health diagnosis?
• How are the effects of treatment going to be monitored?
• What signs and symptoms should the caregiver be documenting at home?
• Are there too many pharmacological agents involved?
• Is the individual being over-medicated?
• Is the individual being under-medicated?
• Is drug therapy being changed too rapidly?
• Are doses given on an emergency basis or given as on as-needed basis being used excessively?
• What are the criteria for discharge from treatment?

Practicing good communication
You don’t have to be a doctor to seek and share information, which is a large part of what caregivers do on mental health visits. Good communication is a 50/50 process. Both you and the doctor need to be open to an ongoing collaboration in order to help the individual being treated. Because of a mental health professional’s obligation to keep treatment confidential, your involvement as a caregiver will vary according to the functioning level and age of your child. Listed below are good communication practices for each party:

Psychiatrist or Therapist
• educate patient and caregiver about target signs and symptoms;
• ask patient and caregiver to keep track of changes and report back;
• offer and explain treatment options and discuss supporting research;
• use language that is understandable to a layperson;
• be open to questions and answer them respectfully;
• direct patient and caregiver to resources that will enhance treatment;
• and coordinate treatment with all other providers in patient’s life by communicating with them on a regular basis (e.g., other therapists, teachers, case managers, other physicians).

Patient and Caregiver
• ask the quality assurance questions listed above on a regular basis;
• make requests of the doctor to ensure he/she is practicing the above;
• ask for clarification if you do not understand a term used by the doctor;
• initiate discussions about changes you have observed at home, don’t wait for the doctor to ask you and be prepared to report something at each visit;
• when reporting to the doctor, try to be concise and objective. Keep it short and to the point, using descriptive terms about what you saw or heard; avoid using vague terms that you can’t back up with evidence.

Conclusion

It can be a very confusing and intimidating process to interface with the mental health service delivery system. By practicing the guidelines listed above, you can be more confident that you are advocating for the best treatment for your child’s problem. Remember, you don’t have to be a doctor to ask lots of questions!

For more information and resources on this topic, contact the National Association for Dual Diagnosis (NADD), an organization for persons with developmental disabilities and mental health needs:

NADD
132 Fair Street
Kingston, NY 12401-4802
(845) 331-4336
(800) 331-5362
www.thenadd.org

Valerie Gaus, Ph.D., is a licensed clinical psychologist with 12 years of experience working with individuals with developmental disabilities. She works at YAI-National Institute for People with Disabilities, a private non-profit agency based in New York City. She provides psychotherapy services and supervision in their outpatient clinic, Premier HealthCare, where she focuses on issues related to dual diagnosis, high functioning autism/Asperger's Syndrome, posttraumatic stress disorder, and other stress and anxiety-related problems. Dr. Gaus also maintains a private practice on Long Island, serves on the board for the New York Metro chapter of NADD, and is on the adjunct faculties at Nassau Community College and Long Island University/C.W. Post.

References

Alford, J.D. & Locke, B.J. (1984). Clinical responses to psychopathology of mentally retarded persons. American Journal of Mental Deficiency, 89, 195-197.

American Psychiatric Association (1994) Diagnostic and statistical manual of mental disorders, 4th edition. Washington, DC: American Psychiatric Association

Butz, M., Bowling, J.B., & Bliss, C.A. (2000). Psychotherapy with the mentally retarded: A review of the literature and implications. Professional Psychology: Research and Practice, 31, 42-47.

DeLong, R., & Nohria, C. (1994). Psychiatric family history and neurological disease in autistic spectrum disorders. Developmental Medicine and Child Neurology, 36, 441-448.

Dosen, A. (1993). Mental health and mental illness in persons with mental retardation: What are we talking about? In Fletcher, R.J., & Dosen, A. (Eds.), Mental Health Aspects of Mental Retardation, New York: Lexington Books.

Dosen, A. (2002). Mental health in mental retardation: Current developments and future challenges in Europe (Reprinted from a lecture to the 3rd Congress of European Association for Mental Health in Mental Retardation, Berlin, Germany, September, 2001), NADD Bulletin, 5, 37-42.

Gardner, W.I. & Sovner, R. (1994). Self-injurious behaviors: A functional approach. Willow Street, PA: Vida Press.

Gaus, V. L. (2002, October). What is cognitive-behavioral therapy and can it be used for people with developmental disabilities? Paper presented at the meeting of Hoeve Boschoord, Zwolle, the Netherlands.

Gaus, V. L. (2000). “I feel like an alien”: Individual psychotherapy for adults with Asperger’s disorder using a cognitive behavioral approach. NADD Bulletin. 3, 62-65.

Gillberg, C., & Ehlers, S. (1998). High-functioning people with autism and Asperger syndrome: A literature review. In E. Schopler, G.B. Mesibov, & L.J. Kunce (Eds.), Asperger syndrome or high-functioning autism? (pp. 79-106). New York: Plenum.

Klin, A., & Volkmar, F.R., (1997). Asperger’s syndrome. In D.J. Cohen & F.R. Volkmar (Eds.), Handbook of autism and pervasive developmental disorders (2nd ed., pp. 94-112). New York; Wiley.

Levitan, G.W. & Reiss, S. (1983). Generality of diagnostic overshadowing across disciplines. Applied Research in Mental Retardation, 4, 59-64.

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Events

Applied Autism Research and Intervention Conference
Key Bridge Marriott, Arlington, Va.
Fri. and Sat., Oct. 29-30, 2004

This fall a diverse array of autism experts from around the nation will gather to lead two days of presentations and workshops on topics ranging from promoting communication in young children with ASD, to sexuality instruction for older learners with ASD.

The 2nd annual AAR&I Conference begins Friday with a series of presentations featuring Keynote Speaker Kate Galatas, MPH, Deputy Communications Director for the Centers for Disease Control. Ms. Galatas will discuss CDC research, campaigns, and future initiatives as they relate to autism. Many of the other Friday speakers come from OAR’s distinguished Scientific Council, including Michael Powers, Psy.D, Brenda Myles, Ph.D., and Ann Wagner, Ph.D.

Saturday’s schedule incorporates a mixture of presentations and workshops. The two-hour intensive workshops will discuss topics that include how to implement an effective ABA program; how best to support siblings of children with ASD; strategies for helping kids tolerate doctors, dentists, haircuts, and other everyday activities; and fluency instruction for young children with ASD.

To view a detailed schedule, please visit OAR’s conference Web site. To request a brochure or receive exhibiting information or any additional information, email Nicole Fidler or call 703-351-5031.

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Funds raised go directly to the identification of research priorities and the funding of applied research grants that will help individuals and families TODAY. Please consider making an online donation through our secure server on our web site. Or if you prefer, please send us your donation to the address below. Donations are fully tax-deductible. Thank you for your support!

OAR is a nonprofit organization established in accordance with section 501(c)(3) of the IRS Code and is incorporated in the Commonwealth of Virginia (EIN#54-2062167). As provided for under the laws of the Commonwealth of Virginia, copies of OAR's financial statements are available upon request form the State Division of Consumer Affairs in the Department of Agriculture and Consumer Services in Richmond, VA.

Organization for Autism Research
2111 Wilson Boulevard, Suite 600
Arlington, VA 22201
(703) 351-5031

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