There are so many unknowns about the world of Autism, but there is a ton of research being done every single day, at some of the top colleges in the world. Doctors are dedicating their lives to studying and understanding Autism. We are so lucky to be alive during such an exciting time, with all the constant advancements in education. medicine, communication, technology, etc. Back when my cousins were diagnosed with Autism, they weren't lucky enough to have so much information at their fingertips, the way that we do today. Even though we are all still young in age, my children are at a much greater advantage than my cousins were, because they are growing up during a time with some amazing autism education programs, that are helping people all over the world to better understand what my children are going through, and how to help them along the way.
When my husband and I first suspected that our son had Autism, Edward was only 3 years old. At first, I was completely in denial, and kept telling Chris that Edward was fine, and that he was still so little, and just starting to become a little person. Every time we took Edward to the doctor for whatever reason, any time we mentioned that we suspected that Edward might be Autistic, the doctor would glance at Edward, and then tell us that he was completely fine, and there was nothing wrong with him. Serenity was only a few months old at the time, and we were constantly going to "well baby checks", as well as sick visits for Edward. As a baby, Edward had frequent ear infections, and then started coming down with Strep Throat several times a year. By the time Edward was 3 years old, we were living in our third state as a family (my fourth), and had seen a bunch of different doctors each time Edward was sick. When Edward was born, we were lucky enough to have an amazing family doctor; Pappa John, who had been treating Chris' entire family for 30+ years, but being in a new state, we had been trying unsuccessfully to find a new doctor who we liked as much, but just couldn't find anyone who seemed even remotely competent.
Doctor (Pappa) John was the dad that Chris never had growing up, and any time we needed anything at all, John was right there for us. He was so excited to find out that we were pregnant and having a little boy, because he didn't get to see any babies anymore unless one of his current patients gave birth. Pappa John had been practicing medicine for so long, that I believe Chris, Edward and I (as well as Chris' siblings) were John's youngest patients. Pappa John was always there for us, no matter what time it was. A few weeks after Edward was born, I started suffering from serious Postpartum Depression and Anxiety, and Chris had been trying in vain to get a hold of my OBGYN, to get me help. Unfortunately for us, that doctor was completely useless, and instructed us to call a psychiatrist, but otherwise didn't care. Chris immediately made a call to John's office, and the next thing I knew, he was telling me to get in the car because John wanted to see me immediately. John, who ALWAYS had a completely packed schedule and was really hard to get an appointment with sooner than a month out, kicked everyone out of his office, clearing his schedule for the rest of the day, just so he could take care of me. Chris walked me into his office, and John sat there with us, letting me cry, talking to us, and giving us all the advice and help that he possibly could. He even pulled Chris out of work for a couple of weeks, instructing him that he needed to be home with me, to take care of me. Postpartum Depression is such a serious problem, and being a new mom, we had no idea just how badly I was suffering. John didn't want to risk anything happening to me, so he had Chris take off work to stay home with me, and help me with the new baby. Throughout the fist year of Edward's life, any time Edward was sick, or I had any concerns at all, John took care of anything. Even when our insurance changed, and I no longer had coverage, John let me know that any time I needed anything, he wanted me to call him, and that he would see me along with Edward, at all appointments. He didn't care that I didn't have health insurance, and couldn't afford to go see him. John still took care of me, and mare sure that my depression and anxiety were under control. Even after we moved away, I was still able to call or e-mail John any time I needed anything. Edward and I were even lucky enough to be able to go see him while we were back in town for a visit, just before Edward turned 2. When Serenity was born, we had been away from John for almost two years, and realized that it was time for us to finally find a doctor for our kids, and stop jumping around from one urgent care center to the next. We were having a really hard time finding a doctor that we liked, and even after starting to see a doctor who came recommended by a close friend, we still weren't happy because no one measured up to who Pappa John was. No one took care of us like John did. No one was as good. I can't tell you how many times I was snapped at by doctors because they weren't John and didn't care what John had to say, because they were our doctor, not him. I was annoyed, and dreaded every single time I had to take one of our kids to the doctor. But then one day both Edward and Serenity were sick, and the doctor we had been seeing was out of the office for the day, so the receptionist put us in to see one of the other pediatricians in the office, and everything changed! For the fist time since we had left John's office, I FINALLY felt like someone heard me. I felt like this doctor cared, and understood my concerns. The day we mentioned to this new doctor that we thought Edward might suffer from Autism, she immediately agreed with us that it could very well be a possibility, and offered to write him a referral for evaluation. From that day on, our lives completely changed.
Edward was sent to Vanderbilt Children's Hospital for an autism evaluation. We started by seeing a pediatric neurologist, which also turned into seeing an Ear Nose & Throat specialist, Pulmonologist, Gastroenterologist, and a pediatric Psychologist. Edward went thru several different evaluations, tests, ultrasounds, an MRI, EEG, Video EEG, blood tests, etc. Normally, getting an appointment with a pediatric psychologist, is a 6+ month wait, however, because we were going with the specific suspicion of Autism, we were given an option of being put on the waiting list, and waiting at least 6 months before getting a phone call to set an appointment, or if we would like to, Vanderbilt University had a new research study program on Autism, and if we wanted to agree to be a part of the study, the psychologist could see Edward within a 6-8 weeks. It was basically a completely brainless decision. We could either wait forever to get an appointment, or we could cut in line . . . . Gee, real tough decision there! Without even talking the option over with Chris, I immediately agreed to be a part of the research study, and within a few weeks, we had an evaluation appointment set for Edward with Vanderbilt TRIAD.
Vanderbilt TRIAD is Vanderbilt University's Treatment & Research Institute for Autism Spectrum Disorders. Before Edward's evaluation was scheduled, I was instructed to download an app on my phone, which had a bunch of different questionnaires for me to complete about Edward, as well as videos and pictures that they wanted me to take and submit for their panel to evaluate, so that they could determine if there was an actual possibility of Edward being on the spectrum, or if maybe he had some kind of other developmental delay that they could give us some kind of direction on. Over the next several weeks, I answered so many questionnaires and filled out a ton of paperwork. I was answering all kinds of different questions about everything from my toddler's interests to my pregnancy and delivery, as well as some family history. The TRIAD team was very in depth in their assessments and evaluations. When the day finally came for Edward's formal evaluation, we spent over 4 hours at Vanderbilt University with Edward, while the TRIAD team played with him, having a great time, while Chris and I sat talking with the pediatric psychologist, watching our little man play. The room we were in was a large almost daycare type of set up, with one wall that was a huge two-way mirror. Throughout Edward's evaluation, different team members came into the room to play with him. They played catch, did puzzles, danced, ate snacks, colored, blew bubbles, etc. Edward was having the best time, and had no idea that all these adults were actually evaluating him for autism. He was only 3, and probably thought that all those fun people came in to play with and entertain him while Mommy and Daddy were talking to the doctor. In no way did it feel like we were in that evaluation for 4 hours, but it happened. We spent 4 hours watching Edward have a great time playing with all the team members. At one point Serenity, who was about 13 months old at the time, had gotten cranky and was needing a nap, so I decided to step out of the room to feed her, and get her to sleep. The psychologist told me that I was welcome to step into the room on the other side of the mirror if I would like do. It was pretty cool to be on the other side of the mirror, watching the evaluation rather than being in the same room. There was another team member in the room with me, watching and taking notes. As I sat there with Serenity, the the lady who was in there watching, started explaining to me some of the different "testing" they were doing with Edward. At one point they got a bubble gun out, and were blowing bubbles. The lady playing with Edward at the time would shoot some bubbles out of the gun, then stop and watch Edward, waiting for him to run around popping them, then come to her to ask for more. No one was telling Edward what to do, and that he needed to ask for the bubbles, or to make some kind of contact to let the lady know that he wanted more. It was all part of the testing and evaluation, so they could see exactly where Edward was at in comparison to other kids his age.
At the end of Edward's evaluation, the pediatric psychologist told us that there wasn't a single doubt in her mind that Edward is autistic. In talking with her that day, Chris and I learned that she had been working in her field for over 20 years. She wasn't some new lady without a clue as to what she was doing. We had recently been to a few other evaluations at different places, where we were told that there might be a possibility that Edward could be autistic, but they just "weren't sure". He definitely suffered from some kind of development delay, but as for Autism, Edward fit some of the standard criteria, but not all of it. Chris and I mentioned the prior evaluations to the doctor, and she wasn't surprised by the outcome at all. Autism Spectrum Disorder has such a broad range that unless you are specifically dedicated to the study of Autism, it is hard for recognize and diagnose someone. There are so many different aspects, and non one on the spectrum is the same. As we were talking, the doctor asked us a few questions about Serenity, and her age, then mentioned that she would like for us to bring Serenity back when she was 18 months old so that she too could be evaluated because while they were playing with and evaluating Edward, they also noticed a few autism traits in Serenity as well. Chris and I questioned how they could have traits in Serenity so early, because she was barely a year old, and we asked how old a child needed to be to receive a formal autism evaluation. Interestingly enough, the doctor told us that the youngest child she had ever diagnosed was only 14 months old, which at the time, was just a few weeks older than Serenity, and that the early the child receives a diagnosis, the more beneficial it is for the child.
Once Edward and Serenity received their autism diagnoses, so many doors have opened for them. Both kids began receiving speech, and occupational therapy. Edward also received food therapy, and joined a group of kids his same age, for therapy two mornings a week in a preschool type setting. Currently, Edward receives all this services through school, and Serenity is beginning in home Early Intervention through the state and the school district, and as soon as she turns 3, Serenity will join the pre-k program at Edward's school, and receive all of her services there.
I currently only have a paper copy of Edward's autism diagnosis, but I have an electronic copy of Serenity's, so with permission from Chris, I am going to share part of her diagnosis below. I have had a lot of people question my kids' diagnosis, especially Serenity's because she is so young. A lot of people have a hard time understanding how Serenity was possibly diagnosed so young, and don't believe that she actually does suffer from Autism, but instead think that Autism is highly over diagnosed, and that Serenity was somehow put into the Autism category because she might possibly have some type of problem down the road. Chris and I don't agree with that type of thinking at all. We fully trust and believe in our medical team, and know for sure that Serenity is indeed autistic, and that we are definitely doing the right thing by getting our kids all the help they need. We have an amazing team of doctors, teachers, counselors, and various specialists who we are in constant communication with, and because of it, our kids are doing very well, and making improvements every day.
Note:
Not every child's diagnosis will be the same. Autism Spectrum Disorder is such a diverse disorder than each patient is different, and can not in any way be compared to the next. If you suspect that your child may suffer from Autism, please contact your health care provider. You can also visit TRIAD's website for more information on Autism, as well as information about the Vanderbilt University national autism study. There are several other studies available through other universities such as Stanford University, and the Children's Hospital Of Philadelphia (CHOP). Here are a few links that may be beneficial to check out.
Vanderbilt TRIAD
https://vkc.mc.vanderbilt.edu/vkc/triad/research/
Stanford University
https://med.stanford.edu/autism/studies.html
Saint Joseph's University
https://online.sju.edu/graduate-certificates/autism-studies-certifications
Saint Mary's College Notre Dame University, Indiana
https://grad.saintmarys.edu/academic-programs/master-autism-studies
Griffith University
https://www.griffith.edu.au/study/education/autism-studies
Children's Hospital Of Philadelphia
https://www.chop.edu/conditions-diseases/autism-spectrum-disorder
Johns Hopkins University
https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/project_restore/research/autism-research/index.html
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