For those of you who don’t know, Kate (my clinical assistant) and I recently took a trip to Ghana in West Africa. A Ghana-based group called Autism Action Ghana (AAG) invited us to come evaluate and treat children with autism. Our trip was a resounding success. From the people we met, to our experience in the country, to the children we helped, we were received with open arms. I hope you’ll enjoy this account of our experience.
Monthly Archives: May 2016
More About AAG (Information from AAG)
Autism Action Ghana is a registered, Non-Governmental Organization, founded in 2014 by Peter and Dr. Araba Fordjor after their 2 ½ year-old son was diagnosed with Autism Spectrum Disorder (ASD). Having been told there was no hope, they were even more awestruck by the lack of support, information and resources that accompanied the diagnosis and the hopelessness and despair that they faced on their lonesome journey.
Autism Action Ghana (AAG) seeks to create awareness of Autism Spectrum Disorders in a bid to generate understanding of the disorder amongst the general public, shatter the stigma and facilitate early diagnosis. But perhaps most importantly, AAG seeks to provide families with current clinical and behavioral evidence-based interventions and approaches that will directly impact children with autism and equip them to attain their maximum potential.
In Ghana, awareness of autism as a medical or neuropsychiatric disorder that can be treated is lacking. Many children’s symptoms are attributed to poor parenting and spiritual beliefs leading to stigmatization, inappropriate care and denial of their basic rights and opportunities.
How Did This Come To Be?
Many have asked me how we came to be invited to treat these children half a world away. It’s a bit of a long, convoluted story so I’ll try to make it short. The Vreeland Clinic had a previously existing patient with ties to Ghana. She put us in contact with a woman whose child had autism. Through this connection, Dr. Fordjor heard of us. Several patients actually traveled from Ghana to see us in Vermont. Eventually, Dr. Fordjor invited us to come to Ghana to see those who were unable to make the journey. After much careful thought, we decided this was an opportunity we could not miss.
AAG offered to cover my costs to get to Ghana and all costs while I was there (lodging, food, etc.) I decided that in order to be effective, I would need some help. I was going to need someone else there to help me with patient flow, note taking, dietary questions, etc. I knew there would be A LOT of questions from the parents, and I simply wouldn’t have time to answer all their questions and see all of the patients without help. That’s why Kate was on the trip. She helped coordinate patient flow, wrote down instructions, took notes, discussed dietary changes, and counseled patients on all the changes they were going to have to make to be successful. Now that we’re back and I have some perspective, there is absolutely no way I could have done this alone. I would have not been nearly as successful without Kate there.
Our journey really began months before we left. We needed to be vaccinated for yellow fever. Both Kate and I elected to get the hepatitis A vaccine as well given the ease with which it is transmitted and the effectiveness of the vaccine (98%). We also wanted to do what we could to offset the costs for AAG. I came up with the idea of starting a GoFundMe page. Using the great power of crowd funding, we were able to raise $9,575. This allowed us to see every single child at no cost and help greatly offset the costs AAG would have to absorb to set up the weeklong clinic. Our goal was to raise this money so AAG could use its funds in other helpful ways, and I’m certain we achieved that goal.
Leading up to our departure on April 22nd there was a lot of planning, but I’ll spare you the boring details. AAG took care of everything on their end. They booked our hotel accommodations, secured a room (with an air conditioner!) for us to see the children in, and even secured someone to cook all of our meals while we were there. It was a blessing not to have to worry about that! We booked the flights on our end. We took a short flight from Burlington, VT to JFK airport in New York. Then we had a direct flight from JFK to Accra, Ghana. AAG contacted Delta (our air carrier from NYC to Accra) and they kindly upgraded our seats to Delta Comfort Plus free of charge. The extra legroom and food was nice on the 10-hour flight.
Our flight from JFK was uneventful and we landed in Ghana at about 7AM on the 23rd. We were both a little tired, but very happy to be in Africa. We exited the plane and I immediately noticed how hot it was! The humidity is always high in Ghana so it makes it feel even hotter. As we made our way into the airport, we were screened for Ebola by means of a thermal camera. Basically, they’re looking to see if you have a fever. We passed the test. Then we went through customs and grabbed our bags.
Dr. Fordjor and her husband, Peter, met us at the airport. As we discussed our travel and how hot we felt it was, they remarked that it had been quite hot recently even for them! We departed the airport and they took us to breakfast. I’m not sure what I was expecting, but we had a very nice buffet breakfast at a local hotel. There were eggs, omelets to be made, French toast, potatoes, etc. It was quite good and it felt nice to have some food in our bellies. They dropped us off at our hotel and provided us with a Wi-Fi hotspot so we’d have Internet service wherever we went. This is so nice to have!
Our hotel was great. We each had a room with air conditioning and a refrigerator. Strangely, they did not provide towels, washcloths, or, of all things, a trash can. Fortunately, Kate and I each brought a towel thinking we might make it to the beach one day. We never made it to the beach, but the towels sure did come in handy. We also did not have any hot water, but we did okay without it. It was somewhat nice in the evening to take a cool (cold?) shower.
The next day was Sunday and our only completely free day to explore Accra. AAG provided us with a driver. His name was Robert, and he took us all over Accra. We saw many sites from the very busy, modern downtown district, to a fishing village in which no one had running water, sewage, or electricity. The people living in the fishing village hand carved their wooden boats and used them to catch small fish in the ocean. The fish were then spread out over the ground to dry out, then they were smoked and brought to the market to sell. The fishing village was directly in the shadows of the Jamestown fort, a very large castle-like structure that was once used to imprison the locals before they were shipped off the Europe and the United States as slaves. The pier they led the slaves to where large boats waited to take them to other parts of the world still stands today.
We also visited a local market where we bought several souvenirs for our families. Haggling is the name of the game there. Our guide to us to reduce the price they were offering by a factor of 4 and that would likely be a good deal. It was kind of intense, but perhaps because culturally we did not understand the bargaining nature. It’s just how they do business in the markets. To us it sounded very much like arguing, but we were assured it was just business.
We had a nice lunch on the coast where we were right on the ocean. It was hot, so some food and water felt quite nice. After lunch we continued our exploration, driving around some more. Eventually, we went by the US Embassy. It was fun to see. We headed back to our hotel and got prepared for the start of our long week of seeing patients.
We spent Monday-Friday seeing patients from 8AM to 6PM. They were long days, but they were worth it. In all, we were able to see 44 patients, most who had been diagnosed with autism. We saw just a handful that were not.
I think the overall theme from the week was about the stigma that is attached to autism in Ghana. We were told about it, but until we started seeing patients and were exposed to it, we could not fully understand the depth of it. Many, particularly the men, believe a child with developmental challenges reflects poorly on the family. Or in the case of men, it reflects poorly on them. This is such a powerful stigma, men may completely abandon their family if they have a child on the spectrum. It is hard for us in the US to imagine, but I bet if you dig deep enough you can see it here too.
People have asked me, “What exactly can you do for autism? Is it really treatable?” The answer is a resounding, “Yes!” With autism spectrum disorders comes a host of documented changes in the way their central nervous systems and their metabolisms work. There are changes in the circuitry of their brains that, when assessed properly, can be improved through eye exercises, light and sound therapy, balance exercises, tactile exercises, PT, OT, speech therapy, primitive reflex remediation, and the list goes on and on. The list of exercises that can rewire the brain is endless. You are only limited by your imagination!
So, our job was to determine what exercises would be most beneficial for each patient. I did this by putting each child through a comprehensive neurologic exam looking at eye movements, primitive reflex testing, balance tests, etc. This allowed me to pinpoint which areas of the brain are struggling and recommend the correct therapy. Each parent was given a list of 3-5 exercises to begin to work on with their child. It is very common for children on the spectrum to skip developmental milestones as they grow. Commonly, they do not crawl or they crawl for only a very short period of time. We saw this in about 80% of the children we attended. Therefore, one of the main exercises we recommended was to properly establish a cross crawl pattern of gait in each child. This is done by having the child alternate touching their opposite knee to their elbow. They do this for 2 minutes, twice per day, and it abolishes the homolateral crawl pattern their brain is stuck in. Remediating primitive reflexes like this helps the brain organize itself in a way that is more efficient and allows for better brain function.
Metabolically, children with ASD are known to have changes in gastrointestinal function characterized by bacterial and/or yeast and fungal overgrowth, changes in the efficiency with which they produce energy, or changes in the efficiency with which they detoxify environmental and endogenous toxins. As some of the children had stool and metabolic testing prior to our arrival, we were able to see this firsthand. One thing that struck me was the large use of antibiotics. Most of the children had 2-3 courses per year from the time they were born through the age of 3 or 4. Knowing the effects of the gut on the brain, this was especially concerning to me. The testing confirmed my concerns and revealed massive bacterial and yeast overgrowth. Metabolic testing confirmed many of the children had a reduced capacity to produce energy and detoxification pathway weakness. For the children who were unable to get the testing done, my clinical experience combined with the knowledge of the research guided my therapeutic recommendations. The recommendations for this are generally in the form of supplements. Most, if not all of the parents had contacts in the US or the UK to send them the supplements we were recommending. While we were there I met a pharmacist who wanted to set up a local pharmacy to sell the supplements we were recommending. This is an exciting prospect and I hope we can set that up.
Dietary changes were also recommended. The diet was shifted to a very low fermentable diet in order to reduce microbial overgrowth in the GI tract. This was a difficult shift for them to undertake. Much of the Ghanaian diet is high in starch, which means it is also generally quite fermentable. Shifting away from this caused a bit of anxiety for the parents, but they were willing to make the shift if it meant an improvement for their child.
All of the parents have access to me via email and we’ve seen a pretty steady stream of questions coming in since we returned. Additionally, we can connect via phone or Skype in the future if need be.
The experience was a good one. I think we learned as much from them as they did from us. I hope to continue our relationship with AAG in whatever form that takes. Until we have the chance to return, we’ll continue to monitor these wonderful children from afar and make the necessary adjustments to help them reach their maximum potential.