When should you seek a diagnosis?

There was a time, in the very beginning of this journey, where I didn’t see the value in a diagnosis. I was adamant that no matter what, a diagnosis would not change who he is or our treatment plan. Both of those things are true. We were already doing PPCD, OT and speech, a diagnosis wasn’t going to change that. Putting down on paper that is was called autism does not make Rivers and different person. But somehow, I thought it would change everything.

But that was naive. I’ll admit my resistance to a diagnosis was more about me than it was about Rivers. It was what was in MY best interest. I feared that adding that diagnosis, that label, would change how I felt about him. Yikes.

It meant, I could no longer call him “quirky”. It meant that I couldn’t blame his social deficits on just being intelligent. Somehow, if he was just smart, or gifted, that was more socially acceptable. But being Autistic, that felt shameful or embarrassing. It left a lot of uncertainty about our future. And it meant that I needed to accept that he was different. Maybe, if I treated him like a typical kid, he wouldn’t be limited by his weaknesses and he could learn to be like everyone else.

Blogging has been really good for me, cathartic in a way. I have allowed myself to be vulnerable and write about feelings I didn’t know I had. Reading those last two paragraphs is painful. What mother feels these things? The love I have for my children is unconditional, yet I struggle accepting this. Something that he has no control over. This is not the type of mother I thought I was, or the type of mother I want to be.

I mentioned before that at the age of 3, I opted out of PPCD in favor of a 2 day a week MDO program. If I could go back to my (slightly) younger self, I would tell her this is a mistake. Rivers did not do well at all. He wasn’t a behavioral problem, but he was far from thriving. He would sit out of every single activity. When I dropped him off in the morning he ran to the carpet squares in the corner. He would be there when I picked him up. He obsessed over the water fountain, he was not potty trained, and his speech was still significantly delayed. One day, his teacher asked if I thought he was autistic. I was furious. He had been evaluated at this point, twice by ECI and the district, both told me they did not believe he was autistic. He did qualify for PPCD based on his delays, but not based on autism. Its not her fault, I was angry with her for all the wrong reasons, she was simply expressing concern. I don’t necessarily agree that she handled is appropriately, but never less it was not her I needed to be angry with. I pulled him out almost immediately.

After some time in therapy, his therapist raised concerns. They are used to handling these delicate conversations and while I resented the implications, I didn’t hold it against them. I brought this information to his PPCD teacher. After spending 20 years in special education, she told me to wait. She did not see the urgency in getting a diagnosis, but she also did not say it wasn’t coming. This was a very important conversation for me. It allowed me to take the time I needed to really think about things. I was happy to have this open dialog and relieved she told me it was ok to wait. It was not going to change anything with the services he was receiving and it was ok to wait.

A few months later, she was walking Rivers to the car after school, and she simply said “It’s time”. I can’t really remember how those words hit me. I had held on to the idea (that she echoed) it wouldn’t change anything.

I can’t really say what changed for me, maybe all I needed was time. Things became more obvious to me, I became more aware of the differences. This notion that maybe parenting a child on the spectrum is different than parenting a typical child became apparent. Maybe there was in fact value in a diagnosis.

I knew I wanted to go to the Child Study Center in Fort Worth. I can’t really explain why I was so passionate about that location specifically. I felt like they would be more thorough. I wanted them to run an IQ test and find out he was a super genius and that would explain everything. The process to get in to CSS is long. There is an application you must fill out before they will consider an appointment. This application included a questionnaire for me and his teacher. From there, they would process the application, and assign us to the appropriate pediatrician and we would be put on the waitlist. I completed all the paperwork and I held on to it for months. We submitted in July of 2017 and our appointment was the end of October 2018, nearly 18 months.

The appointment was anticlimactic. It was the same evaluation I sat through many times. In fact, most recently, the last year of PPCD he was up for a new evaluation and they did in fact call it autism. This placed Rivers into the STARS program in Keller ISD, which gave him a classroom aid for the portion of the day and pull out services twice a week. By the time the CSS pediatrician offered the same diagnosis, it was redundant.

I am happy to report, this diagnosis has not changed how I feel about my son at all. I am sure you know that by now, and you probably even predicted this would be the case. But it did change things. It made me more patient and understanding. It allowed me to accept some of his “quirks”. It helped me manage my frustration with his stimming (ya’ll its bad). It gave me insight into his world and taught me that he isn’t just like everyone else. And thats ok.

So if you want my opinion on when to seek a diagnosis, my answer is when you are ready. I don’t have any regrets about our timeline. We were already in therapy, and nothing changed for us there. If you are not ready for a diagnosis, but are concerned about delays, I do encourage you to seek services as soon as possible. You may not need a diagnosis for insurance to cover them, so you can get help even if you aren’t ready to take that next step. I don’t think denial is a good or happy place to set up camp. But if you need to spend a little time there, it’s understandable. I still visit.