As a mother, you tend to have a sixth sense about certain things when it comes to your children. When my oldest son, ABC, was just 6 weeks old, he was vomiting violently at every feeding. I researched and found what I thought my son was suffering from. I took him to the pediatrician only to be told that it didn’t look like he had pyloric stenosis, but that they would go ahead and do an ultrasound just to put my mind at ease. The results came in and my son did have pyloric stenosis and was admitted to the hospital moments afterwards. The doctors were surprised that I was able to diagnose my son with him displaying just a few symptoms.
At 2 years old, I noticed a speech and language delay and brought it up to the attention of the pediatrician and some of my family and friends. Everyone told me not to worry and that boys typically were delayed in various areas. I was treated like I was this constant worry wart of a mother, however, I was a special education teacher who had a background in child development and working with children with special needs. I tried not to worry and I tried to let it go but then behaviors began to manifest around the age of 3. My son had a difficult time with transitioning from one place or activity to the next which led to meltdowns. We noticed a sensitivity to certain noises, like the flushing of a toilet in a public restroom, the hand dryer, lawn mowers, blender, and vacuum. He was also having difficulty functioning in his daycare classroom and the daycare was having trouble managing him, his behaviors, and interactions with other students. He recognized his peers, however, he preferred playing on his own. My son did make attempts to socialize with other children, but because of the language delay and his speech being moderately unintelligible, others found it difficult to relate to him. We were then asked to find another daycare facility as the daycare he was at felt they could not meet his needs. I was crushed but I completely understood. As an educator, I knew how these kinds of behaviors could interfere with the dynamics of the classroom. They worked with us until we could have ABC tested and staffed into an early education program through the school district.
By 4, ABC had already been screened by the county and a behavior analyst had been following his progress. After seeing my son a few times, the behavior analyst suggested that my son seemed to be sensory seeking. And it clicked. It all made sense to me. My son loved pressure, rough housing, crashing into furniture (not to hurt himself), and constantly needing to touch or be touched. My son also began jumping and flapping during certain activities, like watching tv, or when he was excited about doing something. The meltdowns, inflexibility, sensory integration issues, routine driven, social and communication deficits… I started to piece it together. I knew my son had Autism.
When I suggested it to my pediatrician, he completely dismissed it because my son had eye contact, could speak and was social, BUT, he referred me to a developmental psychologist, anyway. We saw the developmental psychologist and when we reviewed the ratings, my son had scored in the clinical range for PDD-NOS, which falls under Autism Spectrum Disorder. My eyes just filled up with tears. I couldn’t even hear what she was saying. At some point she stopped talking and reassured me that my son was not autistic, and that even though he had some characteristics, he didn’t look like the typical autistic child. I found some relief in what she said because I wanted to believe the report, but I didn’t. I couldn’t. Not after all I had seen and all I had been studying on my own. But I moved forward and decided to wait to see how he would do in school full time.
By 5 years old, my son had done well in the early learning program and was doing exceptionally well in kindergarten. I was told at his IEP meeting that he was the “cream of the crop” and an “outside of the box thinker”. We were so excited to see all of his progress academically, however, socially, he was still struggling with making friends. Services were left in place to transition ABC to first grade and then we would reconvene to discuss releasing him from the Exceptional Student Education program. This brought a wave of relief to me. I thought to myself, “I was wrong. He is doing well and improving. He’s just a bright boy who is introverted.” And that satisfied me for a while, until first grade.
Right out of the gate we had problem after problem. His reading progress had regressed, he was still struggling with displaying appropriate social skills, it was difficult for him to attend to and complete tasks, and writing tasks left my son having attacks of anxiety in the classroom. At home, we were still having trouble getting him to start or complete everyday tasks without having to be physically present to prompt and even help him complete the morning routine. At this point, we decided to see a neurologist, which shortly after seeing him, diagnosed my son with ADHD. We started medication and saw some improvements in academics, and his ability to focus. The neurologist then suggested that my son be tested for learning disabilities just to make sure that there were no other underlying issues. He asked me if I had any concerns. I remember there being a lump in my throat when I said, “I want him to be tested for Autism Spectrum Disorder.” The neurologist seemed surprised at my request, and had asked why. I expressed my concerns, I shared reports from the past, and flat out told him that I needed to know for sure once and for all. He told me that the neuropsychologist could certainly test for ASD, but that he would be surprised if he was under the spectrum. After all, he didn’t look like he had autism.
The neuropsychologist had sat with me and asked what concerns I had about my son. I told her the concerns and then added at the end briefly that I needed to know if he was on the spectrum. She looked up at me and said that she doubted he would fall under the spectrum but was willing to test him to be sure. She then added that if by chance he did end up on the spectrum, he would be extremely high functioning. I nodded and replied, “I just need to be sure because if he is, this will help get him the accommodations and services he needs for school.”
I sat in the waiting room all day long while my son completed a developmental and academic evaluation. It was nerve wracking and my stomach had been in knots all day. I had several surveys that I had to complete, and surveys that I had to have his classroom teacher complete for the report to be closed out. I made sure that I thought long and hard about each question, and rated him objectively. Some of the questions made me laugh while some brought tears to my eyes. It took me several hours to complete all of the questionnaires but when I had finished, I felt confident that my answer choices depicted where my son was. And then, I waited.
Two weeks later, I received the report. I remember skipping through and going straight to the last page to see the summary and diagnosis results. My eyes immediately overflowed with tears. My son was diagnosed with Autism Spectrum Disorder, level 1. I was filled with so many mixed emotions. I was relieved that we finally had an answer to all of our concerns but at the same time I was heartbroken. I remember some of my friends and family that knew I was getting the result that day calling me to ask what the report said and I broke down before I could even get the words out of my mouth. I had the hardest time just saying the word Autism. I then received a call from a very close friend of mine and what he said really put everything into perspective for me. He said, “ I was going to tell you how sorry I am about all of this but I’m not sorry. You knew there was something there and you went for it. You changed diets, went to therapies, and got him early intervention. You did everything that you needed to do and he is already this much ahead because of you. So I’m not sorry, I’m proud of you.” It was just what I needed to hear. Validation.
These past two-and-a-half years were a constant struggle. I felt like no one understood where I was coming from. I was told that I was taking my job as a teacher too seriously, and made to feel like I was some lunatic trying to diagnose my son who obviously didn’t look autistic. And they were right. I take my job as an educator quite seriously. I’m in the business of dissecting behaviors, teaching students with complex needs in unconventional ways, and meeting the student right where they are. So why wouldn’t that carry over with my own children? And my son doesn’t look like he has autism because he doesn’t have classic autism, but atypical autism. As a society, we have a skewed view of what autism is because of television and social media. There is a common quote used in the autism community and it says, “if you’ve met one person with autism, you’ve met one person with autism.” And this is said for a reason. Autism comes in various forms and severities, which makes it difficult for people to really have an understanding of the spectrum itself.
Life with Autism
This is still a new road for us as a family. The diagnosis hasn’t changed how we feel about our son, but has brought in a renewed sense of understanding of who he is and how we can best meet his needs. It has altered the road that lies ahead for our son. This shift in our path that we will now embark on, will ensure that he is provided with the tools, experiences, opportunities, patience, love, and understanding he needs to be successful.
So, what does Autism look like?
Well, for us, it looks like this…
In closing, I will adapt the essay from The Breakfast Club movie.
You see us as you want to see us – in the simplest terms, in the most convenient definition. But what we found out, is that each one of us under the spectrum displays a collection of symptoms that make us unique, and therefore, cannot be defined by a checklist. Each one of us can love, express emotions, connect, and bring something beautiful from our world into yours, but in a different way.
Does that answer your question?
The Autism Club