Beyond the Wall
It is a bright, sunny day at Vista Del Mar Child and Family Services. In her office, medical director Dr. Susan Schmidt-Lackner is sitting on the floor with one of her young patients — not an easy feat for a tall woman in a long skirt, but the doctor is more interested in the little boy than in her own comfort. The child’s mother, seated nearby, recounts her concerns, such as how her son can’t tolerate the texture of most foods and is subsisting on a diet of McDonald’s Happy Meals.
"What do you like about McDonald’s, John?" the doctor asks, moving closer to the boy. She repeats the question until John answers, giving her a fleeting moment of eye contact.
Like most of the children Schmidt-Lackner sees, John (not his real name) is autistic and finds social interaction difficult. His mother tells a reporter that John used to spend much of his time in destructive behavior against others and against himself — biting his own arms, for example. Since being treated by Schmidt-Lackner, who put John on a combination of the medications Prozac and Risperdal, John’s behavior has improved, and he has started communicating with his family, even playing games with his little sister.
"We noticed the difference right away," his mother said.
Another parent of a patient calls Schmidt-Lackner "our miracle worker. She gives it to you straight, but she also gives you hope."
Dr. Schmidt-Lackner, 45, is one of the growing number of doctors and therapists treating children with autism spectrum disorders. In addition to her work at Vista Del Mar, she is an assistant clinical professor at the UCLA Neuropsychiatric Institute, serves on the board of directors of the Autism Society of Los Angeles and will be a presenter at their April 28-29 conference in Pasadena. A California native, Schmidt-Lackner lives in Los Angeles with her husband and their four children. She lectures frequently at conferences on the use of medication in the treatment of autism spectrum disorders and is considered one of the most respected authorities on the subject in the nation.
Autism is a hot topic right now. During the past year, the neurological disorder, which involves a variety of symptoms, including a delay in speaking and an inability to connect socially with others, has been covered in everything from Newsweek to "The Montel Willams Show." The high profile is due mainly to the frightening rise in diagnoses of the mysterious disorder. Schmidt-Lackner notes that when she began working with childhood disorders at UCLA in the late 1980s, the incidence of autism was about seven cases per 10,000 children in the general population; now it is estimated at 20 per 10,000, or 1 in 500 — and more children are diagnosed every day.
In an interview this month (which is also national Autism Awareness Month), Schmidt-Lackner answered some frequently asked questions about autism and her work with autistic children.
JJ: We’ve all heard about the rising number of children being diagnosed with autism. Do you think it is because of the change in the definition of who fits on the autism spectrum, or because there are more children being born with this disorder?
SSL: I think it’s a combination of both. We have a better understanding of autism, and the actual incidence has also increased. Autism is no longer a rare disorder; it is now more common than Down Syndrome, more common than childhood cancers. Everyone knows someone who has a child with autism, so that proves it for me.
JJ: Have you noticed an increase in the number of Jewish children being referred to you?
SSL: I see kids from every walk of life and an increase (in diagnoses) across all ethnic and socioeconomic lines. I don’t see this as being a Jewish problem, like Tay-Sachs.
JJ: What are the recent medical breakthroughs that may help children and adults with autism?
SSL: There is a lot of new research. We’re gathering interesting data and facts, but that hasn’t translated into a lot of effective new treatments for our kids. The atypical anti-psychotics are being used all of the time; some of my kids are even on anti-Alzheimer’s medications, but treatment is still very symptom-oriented. We know autism is linked to the serotonin-transport gene, but in general we are not treating the core of the disorder. Also, it’s important to make sure our kids are getting good support, like behavioral programs. At Julia Ann Singer [Vista Del Mar’s school for children with developmental disabilities and emotional disturbances], what’s great about our school is, we encourage parents to spend one day a week in the classroom, which is very different from the public school model. We also have a support group that meets weekly.
JJ: One of the problems facing many parents of autistic children is the cost of the myriad therapies and evaluations their children need. Seeing someone of your caliber can cost anywhere from $500 to more than $1,000 per visit. Why so much?
SSL: Those prices are usual for a first-time evaluation, not a follow-up, and Regional Center [a state agency] can sometimes fund the visit. But you’re 100 percent right: people who have better economic means get better services. I do a lot of pro bono work because I think it’s deplorable, the lack of services for people who are not as sophisticated about the system.
JJ: What is the prognosis for most children with autism?
SSL: Probably 25 percent of the kids do really well, take off and are able to function independently. The majority of kids are going to need assistance throughout their lives.
JJ: What elements of being Jewish do you find help you the most in your work?
SSL: To me, if I didn’t have this framework [of Judaism], it would be so hard. My parents — that is, my clients — are my heroes. To have a kid with developmental disabilities and be able to live that, day in and day out, you have to be extraordinary. I’m an observant Jew, and the more I do [in this field], the more I realize there’s a very spiritual connection to this work. There’s a spiritual side to these children, and I feel privileged to see these very pure souls.
JJ: What can the Jewish community do to better support families of children and adults with autism?
SSL: Our spiritual leaders need to reach out to people with developmental disabilities. Instead of excluding these kids, we have to include them. The Bureau of Jewish Education has been talking about special ed forever, and Etta Israel is doing a great job, but people need to reach out more. These families need so much support. The divorce rate is so high, between 70 and 90 percent, in families where a child has autism. Families slide downhill so terribly, in a way they would not have if they did not have a child with developmental disabilities. The parents who do the best are the ones who can accept their child’s disability and still see the beauty of that child. It is the responsibility of the Jewish community to pull these families in, to help them push for their child’s potential, but also help them to accept their limitations.
For more information on programs at Vista Del Mar, call (310) 836-1223. For more information on the Autism Society of Los Angeles’ conference, “A Journey to Solutions 2001,” call (818) 953-3855.