The difficulty of a diagnosis: Is it anxiety, OCD, sensory processing disorder, autism, or all of the above?

When HJ was three years old, she had a few unusual fears that made daily life more than a bit challenging. Number one was going on elevators. You wouldn't think that would be such a big deal, but after more than a few times trudging up the stairs while dragging HJ with one hand and her baby sister hanging precariously in my other arm, I told myself that we had to figure out a better way.

HJ doing one of her favorite things, painting

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Number two was going on highways. Again, you think this could be avoided enough that it wouldn't be such a problem, but finding roundabout ways to get to the places we needed to was really starting to complicate matters for us. Especially since we were usually running late due to another issue we had whenever we left the house.

That would be number three, and probably the biggest issue of all, HJ's fear of losing things. She was pretty much a pint-sized hoarder, gathering things from gel pens to plastic bags, socks, DVDs, papers, whatever was her preoccupation at the moment, and needing to carry them with her wherever she went. If that meant taking three bags of "stuff" with her, so be it. I know many a parent and therapist who advised us to have her pick out one or two things that she could take, but the tantrums that ensued when we attempted this new strategy made enforcing it nearly impossible.

I'm happy to report that in the past couple of years, HJ has pretty much grown out of fears #1 and #2, making daily life for our family much easier in those respects. Fear #3, unfortunately, has not completely dissipated, though its severity ebbs and flows depending on a variety of factors such as lack of sleep, overall stress, and general busyness of life.

The first developmental pediatrician we saw diagnosed her with general anxiety disorder. The idea that a three year old could have an anxiety disorder was news to me. We already knew that HJ had some sensory processing issues from our interactions with the Early Intervention occupational therapists. Her sensitivity to certain smells, sounds, textures, and general overstimulation made me pretty certain that this was a problem that HJ would have to overcome for daily functioning. We had also been told by her speech therapist that she likely had verbal apraxia, a neurological speech issue that made it difficult for her to produce certain sounds even though she knew the words.

But an anxiety disorder? It was such a broad and undefined concept to me. If I didn't know what it meant, how were we to help her deal with it?

We eventually found a caring therapist who worked with HJ on attachment issues. During my sessions with HJ and the therapist, I held her like a baby, looked into her eyes, rocked her and sang lullabies to her, fed her goldfish, and told her how much I loved her. It seemed to comfort her. I remember how relaxed she would get in my arms, when her eyes would go from anxiously looking around to the room to finally settling in my gaze and calming down. I hoped with all my heart that it was helping to reduce her anxiety and increase her overall feeling of security.

Since then, we've switched to another counselor who is working with HJ on specific strategies to help her with the daily challenges of school, such as how to interact with her peers in gym class or recess, when she is outside the structured boundaries of her self-contained special ed classroom. Thankfully, she loves her new counselor and has surprisingly opened up to her quite quickly. She sits there working on a coloring page or cutting up pieces of construction paper while telling her that sometimes it's too hard when she goes to the regular kindergarten class for literacy or how some days she doesn't want to go to school.

I know that HJ has made incredible strides since first coming home when she was 15 months old. When you meet her, she may still take a while to warm up, but once she feels comfortable and she's decided she's likes you, you'll hear her laugh, tell jokes and generally run around like a happy five-year should.

But there are still things that we need to figure out. It took a long time for me to accept that HJ had special needs. We tried putting her in regular preschool when she was three, and it was definitely not the right fit for her. Her special ed preschool turned out to be a godsend, in fact, and my only regret is that we didn't put her in it sooner.

All last year, we went back and forth with whether we should hold her back for kindergarten. Again, we went with the recommendations of the IEP team at her school, and put her in the full-day special ed kindergarten classroom, and she's been thriving.

Now it's that time of year again, and we're scrambling to determine what the best placement will be for her next year. Do we have her repeat kindergarten but put her in a mainstream class? Do we move her to a mainstream 1st grade class, and request a classroom aide? Do we let her continue in special ed, and possibly put her in a combined Kindergarten/1st grade special ed class? There are almost too many options at this point to understand what would be best for her.

Part of the difficulty is still not having a specific diagnosis for HJ, other than this collection of overlapping yet confusing labels of anxiety, sensory processing, and apraxia. Some days she spends so much time sorting little things like colored beads into a million different categories that I start to wonder if she has OCD or even autism. I'm well aware that Asperger's is no longer "an official diagnosis" and now part of the larger autism spectrum, but I would be lying if I didn't admit that a specific diagnosis such as Asperger's would almost be a relief to me, in that it would give me a way to understand HJ's issues and know better how to address them.

I completely relate to the way Hanna Rosin articulated it in her article, "Letting Go of Asperger's." She says about her son, "After a few years of resorting to elaborate, novelistic descriptions to explain him to teachers and friends, we began to wonder whether some more officially recognized category, even if flawed, might be helpful."

That's what I was really searching for. A way to explain to others, and to myself, the kinds of challenges that HJ faced daily, without having to detail her idiosyncrasies and quirks in overwhelming detail for people to understand what she was going through.

Recently we took HJ to another developmental pediatrician who specializes in neurodevelopmental delays and autism spectrum disorders. We've just started the testing and evaluation process, but I'm praying that we'll come out with a clearer outcome than we've had before. I'd really like a little more clarity than someone telling us, "Oh, but don't we all have some OCD tendencies?" Or, "My child has tantrums like that all the time..."

I also recognize that a diagnosis wouldn't make everything easier. I know that there could be limitations to her being "labeled" at a young age. However, after four and a half years with my daughter, my mother's intuition tells me that my lovely, unique, spirited girl has some challenges that she is going to need to face, and I want to be able to help her deal with those as much as humanly possible. And if a diagnosis is what is going to help us get there, at this point, I'm all for it.



Source : Chicago Now , 1st March 2014