When Aden and Alex were first diagnosed with ASD, I read every book or journal out there. I wanted to know…what causes autism? I became so consumed with research that it was beyond unhealthy. I had to move on. I stopped cold turkey and faced the fact: I may never know what causes autism.
Fast-forward a year and half. Aden and Alex have been receiving early intervention and both continue to make progress. With our set routines and rigorous schedules, the cause of autism is still lurking in the back of my mind. I realized I no longer wanted to read about research studies; I wanted to become a part of one.
What is SEED? Take a peek: http://www.youtube.com/watch?v=BeKhGBzn58c
According to the CDC’s website, “SEED (Study to Explore Early Development) is currently the largest study in the United States to help identify factors that may put children at risk for autism spectrum disorders (ASDs) and other development disabilities”. For more information about the study visit: http://www.cdc.gov/ncbddd/autism/seed.html
We began the study in September 2012. I received a SEED Study Ladder which was very helpful. It broke down the study into 8 steps which would take place over the next few months. Here is the breakdown:
Step 1: Invitation Call – I received a phone call confirming both Aden and Alex were eligible for the study. When I signed up for the study, I didn’t realize the amount of compensation involved. It is quite generous. After each phone call or interview, I received a Target gift card (who doesn’t LOVE Target?) and during the clinic visit, I received cash. Although, I would have participated in the study without compensation, it was an added bonus.
Step 2: Enrollment Packet – I received two packets, one for Aden, one for Alex. Inside contained a folder with information regarding the study including consent forms, Bill of Rights, Study Flow Chart, and Medical Provider Checklist. Everything was organized and easy to understand.
Step 3: Follow-up Call (20 min) – I completed a Pregnancy Reference Form and Medical Provider Questionnaire.
Step 4: Maternal Interview – This consisted of a 45-minute interview about my pregnancy and Aden and Alex’s health. I disclosed my preterm labor/bed rest and the infamous drug Terbutaline, as well as any issues concerning the boys first year of life. This included Aden’s Respiratory Distress Syndrome at birth and Alex’s surgery at 7 weeks for Pyloric Stenosis.
Step 5: Clinic Scheduling Call – During this call, I scheduled the days/times of the clinic visits. Lucky for me, Aden and Alex both attend programs at CARD, Monday through Thursday. The staff was very accommodating and allowed me to schedule my interviews while both boys were in class.
Step 6: Follow-up/Questionnaire Call – Before this call, I received a packet of questionnaires pertaining to Aden and Alex’s development, including their current language skills, social skills, and other behavior.
Step 7: Parent Interviews – I was able to break up my interviews over 3 days. At times the questions were difficult to answer. I mean difficult in multiple ways. First, it was difficult because it isn’t easy focusing on them individually. Second, it was difficult remembering exactly what each of them did and didn’t do at certain ages. Thirdly, it was difficult because some of the questions had me asking myself “are they supposed to be doing this or not?” In a matter of 2 hours, I was confronted with what they are and aren’t doing. Even though I live and breathe it every day, all this information at once was overwhelming and left me feeling sad.
Step 8: Clinic Visit – Before the actual visit, I received a call confirming the day/time as well as packet in the mail. The packet included a Clinic Visit Reminder Checklist and a social story. For those not familiar with social stories, please visit: http://www.thegraycenter.org/social-stories
Throughout the boy’s programs, I’ve seen social stories used to help Aden and Alex prepare for new classmates or “friends”. There are social stories for going to the doctor, dentist, just about anything. The one we received about the study described what would take place during our visit, from “playing with toys” to the dreaded “blood draw”. I read it to Aden and Alex to help prepare them for the day’s events.
The clinic visit lasted from 9am-1:30pm. Two assessments were completed: The ADOS which stands for Autism Diagnostic Observation Schedule. To learn more click here: http://www.youtube.com/watch?v=cIAL1SE0B6I and The Mullen Scales for Early Learning. I couldn’t find a video explaining this assessment but here is a website that shows a picture of the activities used in the assessment as well as a brief description: http://portal.wpspublish.com/portal/page?_pageid=53,69493&_dad=portal&_schema=PORTAL
Aden and Alex received these assessments just before their 2nd birthdays. Both of them tested on the spectrum and our autism journey began. A year and half later, both are still testing on the spectrum. Alex has made significant progress and even tested above average on the visual-spatial component, but everything else was below-average. It’s frustrating because I know what he can do. The day of the test, he simply didn’t want to perform. Aden was in the same boat. He on the other hand, tested almost the same as he did a year and half ago which is quite disheartening. Hearing that your 3 ½ year-old is testing at a 17 month level is terribly upsetting. The test is dependent on the child’s willingness to participate and how well a child responds to the testing activities. I know how much progress Aden has made but his inability to focus doesn’t allow him to showcase his abilities.
After the assessments, we had a short break for lunch, followed by a height, weight, and head circumference check. Finally it was time to provide blood and saliva samples. I dreaded this part of the study but was determined to give it a try. The last time Aden and Alex had blood taken they were a year old and it was a nightmare. My anxiety levels were high so Jon accompanied both boys (I love you Babe). The phlebotomist was amazing. I usually have trouble giving blood, but I couldn’t feel a thing. All four of us successfully completed the last step in the study. It was time to go home.
*Look for us in an upcoming issue of Baltimore Child Magazine. I was interviewed, along with Michelle Landrum (Outreach Coordinator for Autism Research Studies) about the SEED study. I’m excited I was given the opportunity to share my experience with other families and encourage families who are eligible to participate. The more we learn about autism, the better we can help our children and future generations.