The Spectrum

This past May, our son was diagnosed with Autism Spectrum Disorder (ASD), Level 1. ASD Level 1 is also known as high-functioning autism, or formerly Asperger's Syndrome; it's a disorder which leads to difficulty with communication, social interaction, and understanding others' feelings. ASD Level 1 is often accompanied by other challenges such as sensory integration issues, (sensory seeking and/or sensitivity), ADD/ADHD, or mood disorders.

We're keeping personal details out of the public eye for the same reasons I stated when I shared about our daughter's Selective Mutism. But even without the details, I think it's important to acknowledge in general the important events that shape our family, as well as connect with or possibly help those who are starting similar journeys.

It's been a relief to finally have a name for what's been going on for so long, but it's been a challenge to figure out the best approach for where to go and what to do for the long haul. Though finding treatment for our daughter was difficult in its own sense, it was made easier by the fact that only a few people in our metro area had experience in her condition; once we completed her evaluation, our options were so specific that they lead us pretty much in a straight line to the treatment we needed. 

With ASD, it's much less straightforward. Though there are broad similarities, each individual--even on the same "level" of the spectrum--struggles with his or her own unique idiosyncrasies. It's not like there's a list of specific symptoms that can definitely be assigned to everyone with the same diagnosis; it seems there are a lot more variables than I've experienced with other conditions (namely our daughter's condition). It's also different to figure out how to approach treatment as a lifelong disorder that we must learn to cope with and help our son learn to cope to function in a "normal" world, as opposed to a condition like our daughter's that we are essentially working to overcome with time.

On the flip side, Autism is much more common than Selective Mutism, and over the past few years has become widely recognized by the general public, which is encouraging. Autism Awareness Day had special meaning to me this past year, knowing that there are people out there who have been working already for decades to bring both attention and understanding to the disorder. So even if navigating things like insurance and treatment is just as difficult as it was with our daughter's condition, it's refreshing to know that there's a big community surrounding us that's already been established. We have the continual option of connecting with so many other families traveling the same road, there are support groups and community events tailored to ASD needs, and there's just an all-around comfort knowing that it's all there if we need it.

Our personal experience so far has been a big mixed bag; some things that used to be really difficult have become second nature, but new challenges are always surfacing. Some days certain tasks are easy as pie; the next day they are exceedingly difficult and lead to meltdowns. Some days there are only a few bad moments, other days there are none, and some days the entire day is an uphill battle for everyone involved. This article in particular from an adult with ASD helped me understand so much of this dynamic. It's a long read but worth it if you or someone you know are working through similar issues. 

Our next big step is to pursue a sensory integration evaluation and treatment, since it is very clearly needed; in fact, last year I had almost completed an entire intake packet for a sensory evaluation before multiple conversations led us to realize that we should first look into a full behavioral/developmental disorder evaluation that included Autism screening. 

I still feel like we have [many, many] more questions than answers, and there are so many roads different roads we could go down that it's overwhelming. I agonize over the next step, what we as parents can do differently, and what the future will hold, especially when it comes to self care. Blessedly, we've already had so much help and support in the process from family and amazing friends. They encourage us and have even picked up the phone to make critical calls to local agencies when the weight of the confusion and frustration felt too paralyzing to take one more blind step. 

I'm hoping we will eventually find a good match, someone who can work with him and also teach us as parents how to help him navigate the most difficult parts of life. Ultimately I see our role as ensuring that he's not held back from sharing his gifts and strengths with the world; already his evaluators have highlighted his incredible knack for math and mechanics, great spatial understanding, and his very active imagination.  

We've learned a lot already, though, and I think the biggest lesson has been one many parents can relate to: learning to adjust as a parent to nourish and meet the needs of the unique God-crafted child in front of us, as opposed to making them conform to the non-existent child we might have crafted in our imagination based on our own ignorance, experiences, or inflexible expectations.

And even as I personally struggle to overcome the above challenge as a parent or figure out what should come next, it's clear that God continues to be in the smallest details. Last week at Vacation Bible School, I had two notes typed out and ready to give to the volunteers who would be working with my children. Before I could even hand the note to the young woman volunteering with my daughter's group, she said, "I used to have speaking anxiety when I was little and saw the note next to your daughter's name. How can I help make this a comfortable week for her?" And when I went to drop off our son with his group the second morning, his young helper said, "I wanted to let you know that there's a sensory story time for ASD kids on Thursdays at the library. I volunteer there every week." The fact that my kids, with their unique needs, both randomly ended up with the two young ladies most suited to care for them out of some 30+ groups just blew me away. And it gives me so much hope as we continue to work our way through the big wide world. 

As I said, we are withholding the specific details from this public forum out of respect for our children's privacy, but I am always happy talk privately and share personal experiences one-on-one. Especially since I know how difficult it is to work through these special paths of parenting without adequate support or an outlet for the emotions that come with the territory. So if you'd like to share your own experiences or want know more about this significant part of our life, feel free to use the contact form on this blog, and we can have a good chat.

“I am conscious of a soul-sense that lifts me above the narrow, cramping circumstances of my life. My...limitations are forgotten- my world lies upward, the length and the breadth and the sweep of the heavens are mine!”  
-Helen Keller