By Katie Wright
Autism, for at least half of the children, is a medical disease. Dr. Landa has received millions of dollars to essentially replicate the same early behavioral intervention work on moderately to high functioning kids. Landa recently completed a very expensive study on whether pivotal response training, another form of behavioral therapy, was a more effective than the traditional form of behavioral intervention, ABA. Not really.
In 2005 I was desperate. Christian had regressed into severe autism in a matter of months. I dreaded going to sleep at night because Christian would know fewer words the next day. He was beginning to fail to recognize family members. Christian was in a high quality behavioral early intervention for months but was only getting worse. No one prepares families for this. We knew he was so sick but almost no one believed us or took our concerns seriously.
My mom had a connection to Kennedy Krieger. She had heard Dr. Rebecca Landa would be in town soon and asked if Dr. Landa would visit Christian for a consult. Dr. Landa graciously agreed.
So Dr. Landa arrived on our doorstep with a video machine, tapes and a sheaf of published studies under her arms. She was very friendly. I introduced Landa to Christian who by now was terrified of all strangers, had horrible dark circles under his eyes, a red rash all over his face and had loose bowel movements about every hour. No, I never said it was a pretty picture and yes, Landa was very kind to come to our home. However, looking back it could not have been more obvious, even in 2005 that Christian had every single symptom of PANDAS, severe allergies and GI disease, hallmarks of regressive autism, and desperately needed biomedical, not just behavioral, interventions. No sick child makes progress in early behavioral intervention without adequately and comprehensively addressing their medical issues first.
I had just read Karyn Seruossi’s book on the subject and tried to engage Landa in these issues relevant to Christian. Landa was unfamiliar with this work. Then I told her about all the great ABA therapy we were doing with Christian. I was sitting through about 30 hours a week of therapy so I could learn how to engage Christian every waking moment of the day. We practiced ABA, speech therapy exercises, RDI and floortime. My husband and I did it all with Christian every minute he was not with a therapist. But still Christian was losing words, screaming all night…
Dr. Landa was sympathetic but offered almost no insight or advice.
My Mom was growing impatient as well. She complimented Dr. Landa on her school, her videos and her behavioral early intervention program but kept trying to bring the discussion back to Christian. We had asked Landa to our home to give us her insights into Christian, not for a blow-by-blow account of her professional accomplishments and her toddler research program.
There was much talk about “the window.” How I hate “the window” talk! After age 5 what we supposed to do? Give up on our kids and call it a day? At that time Christian was only 3 and I hated the “window” talk even then. Of course we were doing everything imaginable to help him! Landa spoke about how we could still change the course of Christian’s autism with intensive early intervention. I said, I know, I know, I know! That is what we are doing every single minute of the day but why isn’t it working? Why is he still losing words? What do you think about his face and his GI problems?
It wasn’t fair for me to expect a psychologist to solve Christian’s GI problems but Landa should have known something, anything, on this subject. Instead Landa continued to try to engage my mother in more discussions of her grant projects.
A moment later Christian had another explosive bowel movement and started to scream. The acid burned his skin. I took him and ran away as Landa continued to chat with my Mom. Now I was both desperate and angry. My son was fighting for his life and Dr. Landa was not providing us with any insight at all. Instead she was just chatting about her academic accomplishments. My Mom knew I had really had it and followed me out of the kitchen. I asked my Mom to tell Landa to leave and leave now. Christian’s autism wasn’t Dr. Landa’s fault. I was irrationally angry with her because I was terrified. What would we do now? How could this expert know so little? If she knew nothing about helping kids like me why wasn’t Landa planning to attend a DAN! Conference like me?
Five minutes later I heard a car door slam and I felt complete hopelessness.
OK, fast forward a year and we met with Dr. Doreen Grampsheesh. I knew Ivor Lovass had trained her. However, I wanted to meet Dr. Grampsheesh because I had heard that she not just an expert in behavioral interventions but ALSO highly knowledgeable about the biomedical aspects of ASD- ESPECIALLY as they had changed over the past 2 decades of her career. Doreen understood that autism, as she experienced it in her work with Lovass 25 years ago, was not the autism she was seeing today. The children were sicker and regressing at an alarming rate. Finally a psychologist who got it! Why didn’t Landa know anything about this?
Behavioral interventions alone were not enough for kids like mine. Right away Dr. Grampsheesh understood why Christian was not progressing. We talked about his terrible allergies, his broken immune system, the perpetual strep, cellutis, the pneumonia, the GI disease and bad headaches as well. She referred me to doctors who really knew what was going on with children like mine. Dr. Grampsheesh made a real effort to connect with Christian. She did not sit in a chair talking about her research, showing videos of herself. Grampsheeh watched Christian closely, following him around the room, sitting with him playing, trying to engage him. Grampsheesh focused on my child, the whole child.
So please no more spending millions and millions studying minor variations of the same behavioral early intervention. We know it works with moderately to high functioning healthy kids. Every child needs early intervention; we get it, no question. But why aren’t behavioral researchers working on research with clinicians in the biomedical community, and by that I do not mean by prescribing risperdal. If psychologists are going to treat kids they need to learn about and treatments for GI disease, severe food allergies, signs of mito dysfunction, autoimmune dysfunction and yes adverse vaccine reactions. No more hiding from these issues or passing the buck to clueless pediatricians.
During a recent NIH ASD conference Dr. Sue Swedo repeatedly praised all the Dr. Landas of the psych world. Dr. Landa acknowledged that a % of kids were not responding to early interventions and those kids “kept her up at night.” Instead of staying awake at night go to ARI, AutismOne or NAA conference and actually learn more about our children’s biomedical issues! Learn about how to help them.
I tried to follow up with Dr. Swedo on the issue of kids who do not progress. I e-mailed Dr. Swedo information about regressive autism and its co-occurring and debilitating medical problems. I invited Swedo to attend a biomedical conference. I told her that there are about 6 conferences a year and there is always one nearby her DC offices. I suggested Swedo get to know the clinician specialists, like Dr. Ken Bock and Dr. Anju Usman. These doctors work with the most severe, sickest and complex ASD kids. I offered to introduce her to families in the community.
No response, no response, no response.
It is tragic that our public servants care so little and are so unresponsive, so unwilling to engage with the community they purport to serve.
Katie Wright is Contributing Editor to Age of Autism.