When a young or adult child receives a diagnosis of an autism spectrum disorder (ASD), stress frequently accompanies that diagnosis and can affect parents, siblings and other extended family member in different ways. This is the second part of an interview with Dr. Charles N. Cartwright, Director of the YAI Autism Center at the YAI Network in New York City, who shares his insights on this and other topics.
This issue of Autism Spectrum News is devoted to “Helping Families and Individuals Cope with Stress.” What are some of the emotional and financial strains that you have seen on families?
Until a child receives the diagnosis, there may be a great deal of worry and concern: “What’s wrong with my child? Why does he or she seem different than other children? “What could this be?”
Then once parents receive the diagnosis, they are even more overwhelmed: “What does this mean for the future? How are we going to cope? What do we need to do to find the best treatment?” and, the inevitable, “How are we going to afford this?”
The financial resources that it takes to provide optimal care for children with ASD are astronomical. Families are sometimes forced to mortgage their homes to provide necessary services for their children. Or they may have to work several jobs to afford the cost of treatment.
Quite often, one parent often takes primary responsibility for caring for the child’s needs because the other parent is focused on working. Worry and exhaustion take its toll and place a great deal of strain on families. Siblings of children with autism also experience significant stress and tension. It’s often confusing and frustrating and can be scary if the child has significant emotional/behavioral issues, such as aggressiveness toward family members.
At the same time, I want to emphasize the remarkable resilience that so many families show. On a daily basis, I meet families who are inspirational in the way they care for their loved ones. It is a humbling experience to see the sacrifices that these families make and the obstacles they overcome, to give the best to their children.
Why is it important for parents to network with other parents who have found successful treatment for their children?
This networking can be done on the Internet or through a local support group in your community. Parents also should take advantage of ad hoc opportunities. For example, while sitting in waiting areas at physician offices they may share information about resources and treatments, what works and what doesn’t work.
However, parents should remember that each family’s experience is different — the person they speak to may have a strong opinion that doesn’t necessarily reflect the quality of care of a particular center or the effectiveness of a particular treatment.
When looking for residential services for an adult with an autism spectrum disorder, parents need to start planning early, when their children are teenagers or younger. There are agencies that can help with this process, for example, registering with the State office of developmental disabilities.
As the number of children diagnosed with ASD has grown and these children become adults, there has been a dramatic increase in the number of aging parents who are still caring for them. It is important to plan ahead of time for adult services, particularly as there are a limited number of residential places and waiting lists can be long.
What are your thoughts on the co-morbidity of autism spectrum disorders with mental health disorders? Do you think this is something that needs more attention?
Absolutely. This is an area of distinct interest to me because this is my area of expertise. If you take a cross-section of a group of 10-year-olds who have autism, you will find 70-80 percent of them have a coexisting mental health issue. This may be anxiety, impulse control difficulties, attention issues, mood instability, or other emotional issues. So, clinicians need to be aware of the possibility that there may be a coexisting disorder such as attention deficit hyperactivity disorder.
If you look at children longitudinally, you will see an emergence of new disorders that are similar to children without ASD. One example may be the onset of obsessive-compulsive disorder or of bipolar disorder in late adolescence.
It is important to assess how the behaviors and symptoms have developed over time — has there been an onset of new symptoms and behaviors? Clinicians must be aware of these two different dimensions of assessment in understanding emotional, behavioral, and mental health issues in individuals with autism.
Once the mental health issues have been identified, psychotropic medications may be recommended in certain cases, in a targeted way, to help with emotional and behavioral symptoms. We have a better understanding of which medications work in different situations.
But there also is another option that’s just beginning to emerge. There is wonderful new work on the use of cognitive behavioral therapy for individuals on the spectrum, who are able to participate in a therapeutic relationship. We should think more about the use of psychotherapeutic relationships for people with high functioning autism and Asperger’s syndrome who would benefit from forming this type of relationship, and working on important life domains such as employment, recreation, and independent living.
Because many individuals on the spectrum have difficulty expressing their feelings, is it hard to determine what is going on with the individual?
It can be difficult, but I will give you some examples of how we can diagnose and understand individuals with ASD without requiring that they verbally explain their symptoms. Eye contact is one of the diagnostic criteria — the failure to make eye contact with others. It is interesting that eye contact in an individual with autism can be seen as lack of interest or active gaze avoidance. You may get a history that there is a distinct pattern of eye contact that is very different with family members in contrast to people with whom they are unfamiliar. While looking at unfamiliar people you may notice an increased anxiety. Even though the child may be non-verbal, this could indicate the possibility of significant social anxiety. Certain treatments can ease this anxiety and can significantly improve the quality of that individual’s life.
So, we look at signs and symptoms and explore what this mean for the child. Why are they presenting one way in one situation and another way in a different situation? In this way, you begin to look at patterns of mental health issues in individuals with autism.
Charles N. Cartwright, MD, 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