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Applied Behavior Analysis

September 20, 2017 by  
Filed under Uncategorized

by Monica Lee, MD

 

“Point to red” is a common refrain I hear daily. My son says it out of the blue several times a day. He is probably thinking about one of his Applied Behavior Analysis (ABA) therapy sessions he gets at home six times a week. A therapist will sit with him at the dining room table and repeatedly ask him to point to red and reward him with a treat when he does. They will continue this until he masters the task at 80 percent in two consecutive sessions. Ever since he started 15 hours or more of therapy a week, he has been making huge improvements each month. I kick myself for not starting this therapy sooner. His Behavior Interventionists (BIs) work tirelessly with him every day to help improve his joint attention, speech, and social skills. ABA is a growing field where there are just not enough workers to fill the need. BIs are entry-level workers who receive several weeks of training and then usually independently work with children with autism. They get paid just above minimum wage and are subject to often rough treatment from their subjects, who often kick, bite, and scratch when frustrated.

I have no excuse for not starting ABA that first year after my son was diagnosed. I was still in shock and too depressed to read anything educational. I couldn’t even get through the Regional Center’s parent training program. Because of his declining skills, we tried speech therapy right around the time he was two years old. He made no progress after a month of weekly sessions there. And all the speech therapist could say to us was how much he was likely to have autism. A few months after that, we started ABA for three hours a week; it was not enough. We wanted to keep him at the same day care since we had such a difficult time getting him child care, but the day care declined to let an ABA therapist work with him there.

Finally, I moved and we needed different child care anyway. We tried a neurotypical preschool, but he didn’t do well there, so we finally had to get a nanny. That is when he really started to improve. We were then able to get at least 15 hours of ABA a week in a consistent and peaceful environment. He was finally potty trained when he was five and a half, and he even started answering questions with “yes” and “no,” which was something I never thought he would be able to do. He is now able to name relatives in photos. We also found an amazing speech therapist who works with him twice a week. And just two days ago, he finally greeted me excitedly at the door with, “Mommy, Mommy, Mommy.” This was something he had never done before and hasn’t replicated since, but it gives me so much hope. He is almost six years old, and I hope with the help of ABA and speech therapy, this will be the year he will start calling me “Mommy” consistently.

Here are some tips if you suspect your child might have autism:

  1. Get a diagnosis from your pediatrician, pediatric neurologist, developmental pediatrician, or psychologist ASAP.
  2. Have your pediatrician then refer your child for ABA therapy, speech therapy, and occupational therapy. Most health insurance carriers in California will cover this. If not, switch to one that does or move to a state that does.
  3. If you live in California, your Regional Center will cover costs for therapy not covered by your insurance carrier.
  4. During a child’s first five years, his or her brain is most “plastic,” or flexible and able to change and make neural connections based on what the child experiences. This means that the earlier an autistic child receives therapy and the more hours of therapy he or she receives, the more likely you will see progress. Studies show that if children get 40 hours or more of early therapy for two or more years, they have a much higher chance of having a normal IQ.*

About the Author: Monica Lee, MD, is a mom of one son and an ob-gyn in the LA Metro area.

*Lovaas OI, “Behavioral Treatment and Normal Educational and Intellectual Functioning in Young Autistic Children,” Journal of Consulting and Clinical Psychology 55, no. 1 (Feb 1987): 3–9.

A Promising New Drug for Autism!

August 17, 2017 by  
Filed under Uncategorized

by Monica Lee, MD

 

When I walk through the door, I am usually greeted by my son sitting next to his therapist. She will prompt him to say, “Hi ___.” He usually ends up saying, “Hi Brenda, please” (his nanny’s name). He is five, almost six. You might find this a bit peculiar, but I am used to it. You see, having a child on the spectrum means you have to be okay with your son never calling you mommy. On the outside, I remain cool and calm since I have no other children and have never been called mommy, so you know, it’s not like I’m really missing anything. Inside, of course, is another matter. I would pay a lot of money to hear my son call me mommy on his own.

Through the years we have heard of many different alternative therapies for autism including GABA, cannabis oil, and Vayarin, but all the studies relating to them were unsubstantiated and the safety could not be proven. So when I heard about suramin, my heart did a little leap and is still pitter-pattering. The article I read was in The Economist, a well-respected journal, and it seems the drug has already been used in the past to help people with African sleeping sickness and river blindness. Researchers reported some amazing results in the autistic boys taking the drug, including one boy speaking a full sentence for the first time in 12 years! Another boy, who is five years old, started smiling and actually said to his mom, “I just don’t know why I’m so happy.” And on top of that, it has been shown to be effective in a small randomized controlled trial, the gold standard of clinical trials! After reading the article, I immediately sent it to different friends who might be interested in such developments, aka other MD parents of kids on the spectrum, and they were as excited as I was. My son’s dad was just as excited and wanted him to try it right away.

Being the doctor that I am, I delved deeper into suramin and found out that the research is being conducted at UC San Diego, which is within driving distance of Los Angeles, where we live! However, when I looked up the trial in the database at ClinicalTrials.gov, I learned that the lead researcher, Dr. Robert Naviaux, is not recruiting at this time for new subjects. Wikipedia says I can potentially get the drug from the CDC (Centers for Disease Control and Prevention), but this gives me pause because the drug needs to be given intravenously and also I wouldn’t want to dose the medicine and monitor my son myself. This whole journey has made me wonder how far I will go to see my son act normally. How amazing is this idea of hope based on a single article I read online. Now I will be sitting at the edge of my seat waiting for larger phase 3 clinical trials of this drug to demonstrate safety and efficacy.

Here are some tips if you start getting excited about a potential treatment for your child:
1. Consult first with your pediatrician. The doctor may have first-hand knowledge and access to many more databases and sources of information than you do.
2. Make sure that the treatment is safe. Confirm that it is FDA approved and has gone through phase 3 clinical trials at least or has been used for other purposes and safety has been demonstrated.
3. Call into question the sources proclaiming efficacy of the herb, treatment, or remedy. Does the source tend to gain financially if you buy what they’re advocating? Is it government regulated? Does the source have a good reputation or is it nonprofit?
4. Check ClinicalTrials.gov to see what trials are being conducted in your area and if they are recruiting new subjects.
5. Remember that we all want to see our children get better, and we want to keep them safe too!

About the author:  Monica Lee, MD, is a mom of one son and an ob-gyn in the LA metro area.


The information on MommyMDGuides.com is not intended to replace the diagnosis, treatment, and services of a physician. Always consult your physician or child care expert if you have any questions concerning your family's health. For severe or life-threatening conditions, seek immediate medical attention.