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Our Ausome Journey... Part 1: Definitions, Diagnosis and Emotions

November 23, 2016

 

 

I am not a person living with autism. I am the mother of an amazingly loving, handsome, and gifted son with autism. I cannot speak for him, and he is not old enough to tell his own story just yet. I cannot tell you what it is like to have autism, I wasn’t gifted with the amazing brain that my son has. I can simply tell you what it’s like to be his mother. This is my story of loving him beyond words.

 

What is sensory processing disorder and autism?

Think of everything you see, touch, hear, smell, and taste as a car on a highway. For most of us, these cars generally chug along smoothly on the highway giving us lots of cool information about the trip we are on. (“Ooooh, look at those beautiful autumn trees… Mmmmmm pumpkin spice latte! YAY!”) There may be a few minor fender benders along the way (“Ugh, who told granny to fix chitterlings for Thanksgiving?”), but in general we get from point A to point B without incident.

On a highway affected by sensory processing disorder (SPD), much of your time is spent in traffic jams, major collisions, and changing flat tires. Every smell, touch, sound, taste, or visual stimulus has the potential to cause a major backup on your highway. This backup goes beyond annoyance. I’m talkin’ full on road closures during rush hour the day before Christmas type chaos. This is how you know the difference between simple preferences and disorders. Disorders cause disruption of everyday life. Having the tags in new shirts or hearing an unpleasant sound is literally painful to our child. Imagine everything in your environment being like nails on a chalkboard. This is his reality in our world daily.

Autism (ASD) is a neurological difference that affects his ability to communicate with others. This is a spectrum disorder, so not all affected will experience it the same way. Our son is verbal, but he has a hard time expressing himself, deciphering what we are saying to him, and maintaining balanced relationships. If he were a truck driver on that highway, he would have a hard time understanding the urgent message coming across his radio, and he definitely didn’t notice the driver next to him trying to signal to get over in his lane.

 

What prompted you to seek professional help?

This is one of the most frequent questions we get as a parent of a child with special needs. HOW DID YOU KNOW? I always preface my answer with the fact that SPD and ASD are not a one size fits all. Your child may have one or all of the symptoms that we experienced, and NOT be on the spectrum, so please don’t rush to conclusions.

Thinking back, the first clue that I had that our son had sensory issues was his bouncy chair. Ah, the bouncy. How would I have survived with two kids under two years old without it? Well our son thoroughly enjoyed his time in his bouncy chair. And unlike our daughter who would just sit quietly, he liked to slam his body on the back of the chair making it rock as hard as he could manage. Most kids with SPD are either seekers or avoiders. They either look for ways to get sensory input (think kids that like climb, jump, flip, crash into things, etc.) or they look for ways to avoid it (think picky eaters, kids who avoid contact, etc.). Our son is a good mix of both seeking and avoiding. The bouncy chair was the very first evidence of seeking behavior that I can recall.

Our second major clue, and the thing that first sent us to the pediatrician, was surprisingly diarrhea. Little did I know, many children with SPD and/or ASD have gut issues. Our boy had unexplained and consistent loose stools. He was around 1.5 – 2 years old, and with little else to go on, we were told that he had toddler diarrhea syndrome, which is just chronic diarrhea in toddlers. We tried to make some basic dietary adjustments, but nothing helped.

Around 2 years old, we were back at the pediatrician, this time noticing that he was having very clear avoiding characteristics. He would flat out refuse to wear anything but extremely soft sweat clothes, shirts had to feel a certain way, and tags were a definite no-no. He would cover his ears at the sound of sirens, and low vibrating sounds like the bathroom fan or garbage disposal would send him into an uncontrollable frenzy. He was also starting to display some OCD like tendencies and would try to hyper-control his environment. I now understand that having his bathroom set up just so, having extreme routines, or needing his toys placed in a specific way was his way of trying to keep at least some of the cars on his highway from crashing.

The pediatrician was slow to suggest that there may be something going on, but by the time we made another appointment to discuss verbal and motor ticks we were observing, they agreed that we needed further evaluation and sent us to a developmental pediatrician.

 

What was the diagnostic process?

The public health and medical communities stress that early intervention is key in diagnosing and treating children with special needs. Unfortunately, difficulty in getting the appointments necessary to make such an intervention possible, as well as navigating difficult health care systems and insurances, can make this goal nearly impossible.

I have spent years working in the public health field, and have very well connected friends and colleagues. Even with these advantages, I still had a struggle navigating the healthcare system and getting our child the help he (and we) desperately needed. We were first referred to a developmental pediatrician, which took 4 months to get in to see. There we got our official SPD diagnosis and he suggested that we have him evaluated by an occupational therapist. That was a fast turnaround, but the only therapist certified to deal with sensory issues was an hour away from our home. We made that drive once a week for months to receive therapy.

Although the medical professionals disagreed, I knew that we were dealing with autism in conjunction with SPD. SPD tends to be also be seen with many other disorders including autism, ADD, ODD, etc. I followed my gut and got on the waiting list for the two major diagnosing agencies in the DC Metro area. Both of these agencies had over year long waits. As a matter of fact, after a year and a half of waiting, I just received the call to schedule an appointment for one of the agencies a few weeks ago. I laughed and erased the message.

Thank God for a small nonprofit in my area that is run by a pediatrician who also has children on the spectrum. In February of 2016, I was able to get an appointment with them for a consult, evaluation, and diagnosis. The testing itself took a series of appointments over about 2-3 months, and at the end we were provided with the final diagnosis and much needed case management.

We have been out of occupational therapy for nearly a year and have not been able to access behavioral therapies because our insurance cuts off care for all “pervasive disorders” for children over the age of 3. They expect you to access service through your county's local Child Find office (usually associated with the school system). We have had several evaluations with them, and have been repeatedly denied service because our son tests well above “average” and even “gifted” children on their exams. One examiner told me she had never seen anything like him before. So while they recognize his autism diagnosis, and the issues that hinder him as they do other students with special needs, because it’s not affecting his ability to learn, he is denied. Our frustration is that he being off the charts smart does not help us during violent meltdowns, it does not help him with communication, and it does not help him deal with self-insuring behaviors… It does not help him at all. He begs us to help him, and he often asks to go back to OT because he says it made him feel better. But our hands are tied.

So here we are. We got early intervention. We are staunch advocates for our child. We exhausted all possible avenues of assistance. We have great jobs with good insurance. We played by “the rules” and we are still, along with many other families of children with special needs, watching our child suffer while we wait on a miracle.  

 

What emotions did you feel during the process of diagnosis and after receiving official word?

May 6, 2016. We will never forget that date. Even though I had been preparing my heart for over two years, hearing the words, “Your son has autism,” ran over us like a 16-wheeler going 100 mph on that SPD highway. It’s hard to describe what I felt. It was so final. Everything that we once had assumed with such confidence, was now up for question.

Would he make friends? Play sports? Would he marry and have a family of his own? Would he be able to navigate this world alone after we are no longer here to help him? Of course many people with special needs do all these things and so much more, but we can’t help but worry. To hear that your child does not fit into what the world defines as “normal” is indescribable.  

Almost a year later, we have days filled with hope, but we still have days filled with anguished tears. I don’t suspect that will change any time soon.

 

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