Receiving the highest quality clinical treatment services is something every person diagnosed with an autism spectrum disorder (ASD) deserves. In this interview, Dr. Charles N. Cartwright, Director of the YAI Autism Center at the YA Network in New York City, provides an overview of the vital programs and services provided by the YAI Autism Center and the YAI LINK information and referral program. Dr. Cartwright also offers helpful advice to families with young, adolescent and adult children on the autism spectrum to ensure that they receive the most effective treatments. We are grateful to Dr. Cartwright for sharing his knowledge and spirited optimism on clinical treatments and working toward an improved quality of life for people of all ages with ASD and their families.
What is the YAI Autism Center and what services are provided for people with ASDs?
The YAI Autism Center provides families with young, adolescent and adult children access to high level clinical assessment and treatment services. Families are able to benefit from our expertise in identifying early signs of being on the autism spectrum; and then access vital treatments such as speech, occupational and behavioral therapies, as well as treatments of co-existing emotional, behavioral, and neurological issues (such as seizure disorders). We’re also moving beyond clinical services to offer specialized socialization and arts programs. We’re bringing together talented professionals from across the YAI Network to create new and innovative programs for people of all ages with ASD.
In order to improve access to our autism services, we work very closely with YAI LINK (1-866-2-YAI-LINK or link@yai.org), the intake, information and referral service at the YAI Network that provides current, relevant information on services and programs in the New York City metropolitan region for people with developmental disabilities and their families. Families who are looking for information on how to obtain autism services for their children should call YAI LINK as a first step; they will be asked about their concerns, given information about the services they might need and helped through the process of scheduling appointments.
I am impressed with the range of programs that the YAI Network can provide to people of all ages with autism and their families.
We take a “lifespan approach” to all our services within the YAI Network. We begin with early detection and interventions at a young age, and then continue to offer services that maximize potential and enable people to be as independent and productive as possible throughout their lives. Among the YAI Network’s more than 450 community-based programs are early intervention and preschools for children from birth to age 5 through clinical assessment and treatment for children and adolescents, family support, health care, adult day programs, employment training and placement, residential and recreation programs. We serve the needs of people with autism spectrum disorders at each stage of their lives.
We also know that autism does not only affect an individual. It affects a whole family — all the people who are involved in that person’s life. We provide support and information for families so they have the tools they need to advocate for themselves and their children. Often, we provide interventions to help families cope with the high level of stress that comes with having a child with autism. That means helping tackle conflicts in the marital relationship, which is common in families dealing with autism, and also help reduce the stress on the siblings.
There is such an enormous range of information on the Internet, some good, some harmful. In this day and age, many people first look to the Internet as their primary resource of information. If you were a parent whose child was just diagnosed with autism, how would you go about seeking clinical services for your child?
If I were a parent of a child between 18 months and age 2 who was told by a pediatrician that my child appeared to be on the autism spectrum, I would immediately seek out as many services for which my child is eligible. Early diagnosis allows families to seek out the best science-based clinical treatments for their children and start those interventions as soon as possible.
Resources such as YAI LINK are very helpful starting points that provide information about early intervention centers in your area. They can give parents information about who to call, what services to look for and how to schedule an appointment for an evaluation that will result in the formulation of an early intervention plan. They can also help locate support groups in the community. It is important to reach out and make those connections with other families who have been through a similar experience and who can provide social support.
There are specialized academic centers around the country that conduct research into the causes, early detection and treatment of autism, and then publish and distribute their latest research findings. Examples are the Yale Child Study Center and the MIND Institute in California.
It is also helpful to get information from support and advocacy organizations that are focused on autism and hold events and activities in local communities; they also advocate for policies that will improve the lives of families affected by autism.
Autism presents a lifelong challenge. Here is a common scenario that many parents face: Their child is receiving autism services at a public school and begins to have severe behavioral issues, such as obsessive-compulsive behaviors and anxiety. This gradually becomes more and more of a problem to the point where it interferes with the child’s ability to learn and is having a disruptive effect on classroom involvement. What do you do and where do you go then? Again, it is important to reach out to services that keep databases with a range of resources and services for the evaluation of emotional/behavioral issues in children and adolescents with autism spectrum disorders.
Support groups can be vital sources of information where parents can talk with each other and ask questions such as, “Have you been with a particular organization for help, and was it helpful to you and your child?”
What is important for families to be aware of when choosing a clinical treatment center for their children?
A quality treatment center has an established reputation and relationships with key academic centers doing research in the assessment and treatment of children with autism, and has expertise in evidence-based practices. That means the center uses treatments or interventions that have been proven effective through scientific research and clinical trials. It is also important that the center has professionals with expertise in different specialties such as pediatrics, neurology, psychiatry, speech and language therapy, occupational therapy, behavioral specialists, family therapists — all the different disciplines that are involved in the care of children with ASDs.
Professionals should show the parents that they are really listening to their concerns, and include them in decision making about the care of their child. They should show respect for the family’s cultural background. And they should be available over time, as the family faces the challenges of living with a child with autism. Parents have a right to know that when they need their clinicians/doctors, they know that they can get hold of them. That means having their calls answered in a timely way. I think that one of the most powerful things we can do as service providers is to be responsive and accessible both in time of crisis and when the family has questions and concerns that are not as urgent.
So many parents rely on anecdotal information. They hear one thing worked for a friend’s child so, based on that single instance of success, they are going to go ahead and use that treatment for their child. We know that early intervention is so crucial, and months spent on an intervention that hasn’t been backed by science can result in wasted precious time and financial resources. What are your thoughts on treatment and support services accountability to ensure that treatment goals and objectives are being followed and progress will be documented?
I can answer this by describing the “Secretin” story. Back in the 1990s, there was great interest in Secretin and claims that this hormone involved in digestion led to tremendous gains for children with autism spectrum disorders. Secretin became a huge media story and many parents spent thousands of dollars and traveled long distances to find centers that would give their children intravenous infusions of this substance with no follow-up and no adequate evidence of positive outcomes. Great public pressure was placed on the National Institutes of Health to invest millions of dollars in Secretin research. Since then many studies have shown that Secretin has no ability to improve the symptoms associated with autism. The hype was never based on evidence.
So, what did we learn from that? Be careful of anecdotal reports especially when they make claims of significant improvements based on the experiences of just a few individuals. When a clinician prescribes a particular treatment, it should be based on knowledge of the latest scientific literature, as well as a very good assessment of the problems faced by that particular patient. Let’s use the example of obsessive-compulsive symptoms in a child with autism. I would clearly identify the behaviors/symptoms that will be targeted; obtain a baseline measure of their severity, frequency, and how much they interfere with functioning by talking to the family and using a scale such as the Yale-Brown Obsessive-Compulsive Scale; and then choose between the treatments that have been proven effective in the scientific literature. My follow-up will include a reassessment using the same scale so there is some objectivity in measuring progress over time.
In addition, it is important to consult with teachers, therapists and other professionals working with the child about how they experience the child in different settings, and combine this information with the reports given by the parents about the behaviors. I ask, “How much change has there been?” I am aware that there may be a positive change, no change or a negative change in symptoms. When prescribing medication, it’s always important to have a very detailed assessment of safety. We might see great improvement in a particular behavioral domain, but we need to be equally vigilant of the side effect issue and the ongoing safety of the medication. We need to constantly weigh the benefits versus the risks of being on a psychotropic medication, that’s the efficacy (how effective is this medication in reducing the severity of the symptom that you have identified), in relation to the safety (ongoing vigilance in determining short-term, medium-term, and long-term side effects).
This requires monitoring over time. A medication may work well initially and then shift. For example, parents may describe a significant improvement in anxiety in the first couple of weeks but two months later there may be a subtle but important deterioration. It’s important to remain vigilant and keep adjusting treatment.
What evidence-based treatments do you feel hold great promise for your patients with autism? Is there anything new on the horizon?
The Early Start Denver Model that was published in a manual form late last year demonstrated clearly that an early intervention model that is short-term (10-12 weeks) training parents to interact and intervene with their children can significantly improve the developmental outcome of their children. Models of intervention that use both relational and structured behavioral techniques (such as Applied Behavioral Analysis) in an integrated way can lead to significant improvements. Studies show that the earlier we make the diagnosis and offer interventions, the better the outcome. Children can improve their social and emotional skills, their language, their level of curiosity in their environment, and have fewer repetitive behaviors.
From a pharmacological and biological point of view, the promise is what genetics is bringing to this field. New genetic syndromes are being identified. Some people who were given the diagnosis of autism may be found to have a different diagnosis based on genetic testing. With time, we will be able to tailor treatments that are specific to the genetic mechanisms that give rise to the disability. This has happened with Fragile X Syndrome where the gene has been identified and treatments are being tailored to this syndrome. And this is what we can look forward to in the field of autism.
Another exciting development is in the translation of findings from animal studies to clinical treatment. For example, a recent study published in the Proceedings of the National Academy of Science showed that a small group of adults with high-functioning autism and Asperger’s syndrome who were given oxytocin inhalations showed distinct improvements in their sociability and distinct changes in the way that they looked at social signals. This included the way that they viewed faces — where they would spend more time looking at eyes in contrast to looking at other parts of the face that were not as socially relevant. This study is promising because it points to a treatment that may improve the core symptoms and behaviors of people on the autism spectrum, namely social/emotional skills. We have a lot to learn about oxytocin inhalations because we are not sure what the dose should be, how often it should be administered, who might benefit, and most importantly, what the safety issues are. So we need to learn a lot more as we pursue this potential line of treatment.
It certainly is a very exciting time with all the groundbreaking research and new science being conducted in the autism field.
Absolutely. When I speak to medical students and residents who are considering careers, I stress how interesting and groundbreaking the field of autism spectrum disorders is and how optimistic I feel about the rapid progression of new science which is being incorporated into current clinical practice every day. The research has as its goal to improve the quality of life for people with autism spectrum disorders and their family members.
What hopeful message would you like to leave with parents?
It is never too late to learn and grow and develop. We are discovering that the brain has an amazing ability to adapt and change. In the past it was assumed that there are windows of opportunity and if you intervene during that period, then improvement can occur but if you intervene outside of that window, then treatment won’t help. That’s just not the case. People of all ages can improve given the proper type of biological and behavioral treatments. New treatments and interventions are currently being tested and many of these show promise. There are lifelong opportunities for your child, adolescent or adult with an ASD to participate in effective interventions.
Charles N. Cartwright, M.D., is Director of the YAI Autism Center at the YAI Network. He is an expert in the diagnosis and treatment of autism spectrum disorders in children, adolescents and adults. He is a board-certified child and adolescent psychiatrist and a faculty member in the Department of Psychiatry, Child and Adolescent Division, at the University of Medicine and Dentistry of New Jersey.
Previously, Dr. Cartwright served as the Director of the Autism Center at UMDNJ where he directed autism clinical, research and educational outreach activities. He ran a large clinical practice, lectured widely on autism-related topics, advocated for legislative and policy initiatives as a member of the New Jersey Governor’s Council on Autism, which enhanced autism clinical centers throughout the State of New Jersey, and conducted research in autism genetics, neuroimaging and psychopharmacology.
Dr. Cartwright completed a general psychiatry residency in Cape Town, South Africa, as well as fellowships in child and adolescent psychiatry at New York University/Bellevue Hospital and autism research at the Seaver Autism Center for Research and Treatment at the Mount Sinai School of Medicine.
For more information about the YAI Autism Center visit www.yai.org/autism or call
1-888-YAI-AUTISM (1-888-924-288476).
