By Abdulkadir Khalif
As Quresha and I prepared for the short flight to Chicago from Minneapolis for Autism One Conference on the evening of 05/19/2009, I was not sure what to expect and how events would fold out for the next few days. I was mostly quiet worrying about the other members of the Minneapolis Somali parents many of who would join us the following day, and the other large delegation from Toronto Canada who would have fewer problems because they have been to Autism One conference many times before. I spoke with all of them before flying out just to make sure all was well. This being my first Autism One Conference means that I have to be in my best elements, especially when so many people are relying on me. The Northwest flight landed on time at O’Hare International Airport and our transit to baggage claim was easy. Ten minutes later we were on the shuttle to Marriott Suites O’Hare. The check-in there was quick and easy too, thanks to the efficient arrangements by Teri Arranga (thank you Teri). We will be forever grateful to her and JB Handly for making it possible for so many of us from Minnesota, Ohio, California and Toronto to attend this years’ conference. The rest is up to us.
The conference started as scheduled on Wednesday 05/19/2009. There was a steady flow of people from all over the world interacting, exchanging business cards, dishing out flyers, displaying merchandise on hurriedly laid out tables and booths. Many who have met before were busy catching up on stories and developments of the past 12 months. We were conspicuous because of Quresha’s attire and my height and many who recognized me from the name tag were eager to hear our stories. We basked in that attention and glory until the rest of our delegation arrived and diluted that somewhat.
While Quresha was mostly busy attending lectures, I was tied up either by welcoming and checking in the new arrivals or seeking out people I have communicated with for nearly a year but never met. The first one I ran into obviously was Teri of Autism One, thus finally connecting the name to a face; ‘one down’ I mused. I had no idea how many more names I would connect to their faces but as it turned out there would be many. By the time all the delegates arrived there would be a total of nine men and nine women representing sixteen families some of who had more than one autistic child. It was the only time in living memory that the Somali people agreed on an equal representation between men and women on anything. It was also the only occasion I could remember where Somali men and women from every region of the Somali territories (Eastern Ethiopia, Northern Kenya, Somalia proper and Djibouti) came together, some conservative, others liberal, some traditional, others not so traditional, but all united for a common cause – the fight against autism and the welfare of their children. Here whether one likes it or not history has been made.
Autism One 2009 was a gigantic undertaking by any standards. In attendance were every private company or organization involved in autism or autism related goods and services. There were countless number of non-profit organizations and individuals each eager to display their wares and services. The hotel lobby was a like a bazaar in Cairo or Mumbai where goods ranging from latest electronic devices to herbs from exotic plants are sold. Doctors and other scientists mingled with the crowds between lectures answering questions by curious and anxious parents. Many parents who came with their ASD kids clung to them as they elbowed their way through the mass of humanity. Cameras flashed as people took turns for a snapshot with celebrities such as Jenny McCarthy and other household names. Lawyers, Doctors and other professionals held training seminars for their junior partners while parents learned new ways of enriching the nutritional needs of their families. In an impromptu meeting held on the sidelines of the conference our delegation realized that we have to split up and attend different sessions and later compare notes and exchange knowledge. Those who have limited language proficiency were advised to pick up as much literature as possible. Conspicuously absent were all levels of government agencies that would have autism and other public health issues in their docket.
What did we learn from Chicago2009?
How much of what we learned can we bring back to our communities? How do we now rate our understanding of autism and what might have caused injuries to our children? Is there hope for our kids or should we give up the fight and resign to fate just like government agencies and their supporters are telling us? Is it true that some kids are actually recovering and if so how can we do what those parents are doing? Or is ASD just like HIV AIDS where susceptibility is uniform but treatment is discriminatory? What will happen to all those kids whose parents cannot afford expensive biomedical and other alternative methods of treatment? Are there adequate trained personnel in our communities to handle this epidemic (pandemic?). Did we learn anything that would help us challenge politicians, healthcare workers and school districts? Did we hear anything about possible legal redress for the injury to our kids and if so did we learn where to begin? The answer to all these questions is a resounding YES.
We are empowered and fired up and ready to mobilize. We will find ways to recover our injured children and try to make sure that no more children are injured. We will mobilize resources and rally families. We will tell it the way it is without fear and very eloquently-that irresponsible vaccine administration can and did injure our kids. We can relate to countless cases of kids getting very sick on the day of their vaccination and regressing thereafter. We will seek out all mothers of new born babies and all new couples in order to educate them on potential hazards and what their rights are. We will knock on doors at the Capital and all other corridors of power until our voices are heard and adequate steps are taken to stop any further injuries to our children. We will challenge government and academia to live up to their promise of finding the root cause and possible cures for this new public health crisis. We will demand admittance by public health officials that there is a crises in general and that an autism cluster exists in the Twin Cities Metro area, and that it is much more serious than both the department of education and department of health are willing to admit. We will remind them that they have to some extent already admitted that there is prevalence of autism within the Somali immigrant community of Minneapolis. We will make them realize that the numbers are equally bad if not worse in St. Paul and in all the surrounding suburbs of the Twin Cities. We will seek political intervention if need be to make sure our voice is heard.
What did we do after returning from Chicago 2009?
Dozens of families anxiously awaited our return. A few skeptics did not expect any benefits from our visit and some hoped that we have finally found the miracle cure for our children. Both groups were willing to listen to us and actually sought us out. In numerous gatherings in homes, Halal stores and coffee shops and in countless phone calls desperate parents gathered information on doctors, researchers and products they could seek. Mothers of Somali ASD children formed groups called ‘Ayuuta’ to finance expensive biomedical and other alternative therapies that have worked for so many other parents they met at the conference. Ayuutas are traditional micro-finance instruments that disburse interest free loans to members on a rotational basis. It is a system based solely on trust and is mostly managed and run by women for women. Members contribute a fixed amount of money every month and take turns in borrowing for emergencies such as medical problems or to help with funeral expenses. Some ayuutas even lend money for business investments and education loans. In this particular case several mothers have got together to form an ayuuta to fund their children’s biomedical treatments.
Meanwhile, opportunists and desperate government officials are hurriedly putting together another forum to address the issue of autism within the Somali immigrant communities of the Twin Cities metro area of Minneapolis and St. Paul. A senior official of the CDC was to visit the State and talk with the parents and care-givers in Minnesota. The purpose of the meeting was to once again alley fears about the association between vaccines and autism. It was becoming evident that many families are not vaccinating their children anymore because there was no clear explanation of the causes and cures of autism. While everybody is now in agreement that a cluster of autism exists in Minneapolis, nobody can yet explain why. This unfortunate circumstance is not helpful in reassuring parents that vaccines are safe. As a matter of fact many families are now reluctant to vaccinate their children and are becoming aware that they cannot be forced to do that. Doctors and nurses are at pains to try to explain the safety of vaccines and the only people they rely on to pass the word around is a few individuals and organizations who have not been personally touched by autism or who would rather make a quick buck than worry about the safety and wellbeing of innocent children. Parents United against Autism (PAA) is not one such organization. The Minnesota Department of Health and its associates do not invite us to their meetings and forums, nor are we desperate for their ears. We have good ideas on what caused injuries to our kids and we believe that we have found the right path to their treatment and possible cure. We also believe that we have found partners and well-wishers in our struggle. We are excited by the prospects of rescuing this generation. We hope and pray that our hopes and dreams will not be in vain.
Upon my return I got a long phone call from a father of a 4-1/2 year old autistic boy from Indianapolis, IN. His son was born in Kenya in 2005 and came to the USA two years later. He was a joyous handsome boy who spoke his mother tongue very well. The family lived in Nairobi in a crowded apartment building where one room was used as a prayer room where children from other apartments gathered in the evenings to chant Koranic verses. The little boy picked up a lot of those chants and could repeat them very eloquently. His father who travelled to Kenya to relocate the family was very excited about the prospects for the brilliant little boy in the USA. On arrival in Indianapolis, the family was taken through the usual ritual of ‘cleansing’ by numerous vaccinations. One of the vaccines the little boy got was the MMR, the major suspect in autism causation. A few weeks later, the new arrivals were shocked to see their little talkative boy slowly crawl into a shell of isolation and silence. The boy could not relate to his parents and siblings anymore. He could not repeat the chants he so well knew and proudly repeated to his dad. He lost all eye contacts and was like an elephant in a china shop. The family’s life has been turned upside down. His story was so similar to my own and I could definitely relate to his pain. The only thing I could do was to reassure him that there is hope and he should not give up on his son.
The first night after our arrival back in Minneapolis, I took a hard look at my son Abdimalik as he peacefully slept in his bed. I rearranged his posture so that I could take a better look at his beautiful face. He is a deep sleeper and even snores a little-that is music to our ears. As I stood there looking down at him I heard myself saying to myself: “Malik. I went to Chicago to learn and visit with other parents. I learned many people and many things. I am more hopeful now that we can find a cure for your condition. I know there is a cure out there somewhere and many parents have found it for their children. I promise you son that I will also find it. Whether it is in far away Fiji Island or high up Fuji Mountain I will find it. So sleep my love and you will be okay soon.”
Abdulkadir Khalif is a contributing editor to Age of Autism and runs Parents United Against Autism in Minnesota.