You have a diagnosis, now what?

So let’s talk about what led to this blog in the first place, Autism. I think many know that something is off with their child and feel like a diagnosis is the moment they are waiting for to feel heard. I kept telling myself, “once he gets diagnosed, it’ll be better.” In reality, it is true in a way. Some things were better. However, I never knew the level of what would possibly come next.

David developed normally, even advanced, until around 18 months. He hit every milestone, said a few words, etc. However, around 18 months, he just kinda, stopped. He lost the few words he had except ”Da” sounds. I honestly did not think much of it until around his second birthday because I just assumed the skills would continue. You know those milestone worksheets they give you at the doctor’s office? I had just assumed he was doing most of these skills because I hadn’t really considered that he may not be. Once I really began studying the questions, I remember thinking maybe I’m not really seeing these progress.

My best advice to you parents reading this, wondering if anything is wrong or different with your child, is to create a list somewhere you will always have access to. I did it on my phone in the notes app. Whenever I’d see a new “symptom”, I’d write it down. It allowed me to go to his 2 year appointment prepared to discuss my concerns. David didn’t seem to be different to me, he just was delayed in speech, or so I thought. The more I studied his behavior, the more I realized there was definitely more to it. He always banged his head as a baby. I thought he just was having fun. Now I know that he was stimming. He used to gag and choke on foods easily. Now I know it’s that he has sensory issues with textures in his mouth. He would sit alone all day in another room. I thought he was just independent, but now I know that while he is independent, it’s not just that. He would get overstimulated and need more alone time than the average person to regulate himself. I thought he played well with other kids, but now I know it was just his cousin Jordan, who I had babysat his entire life. New kids would come around and he would sit in the corner and begin hitting himself. That was the biggest red flag for me. It was also the most heartbreaking.

David‘s doctor did not think anything was wrong with him because I would answer those sheets quickly, assuming he had all of these skills. However, she is an angel and referred us to our local children’s hospital. It is an insane waiting list to be seen by developmental peds, so we just continued our lives and continued taking notes on our child.

Five months after David’s second birthday, we got an appointment scheduled for the following month. We were shocked that it happened so fast. However, by this time, we were all but positive that David was autistic. The older he got, the more apparent his symptoms became. As I am typing this, I hear him growling at Curious George in my bedroom 😂. He is who he is, we wouldn’t change him for the world.

When his appointment came, I was a nervous wreck. I was not nervous about leaving with a diagnosis, but instead I was terrified I would leave without one. All I wanted was answers. The nurse asks us what brought us in and I just blatantly told her, “I think my son is autistic.” I’ll never forget her reaction because it took a load of worry off of my shoulders. She laughed and said “Oh thank God!”

So many parents go into these appointments in complete denial about their child. Let me just say your feelings are valid. Special needs or believing anything is wrong with your child is terrifying! However, the best thing you can do is educate yourself on the possibilities and advocate for your child. The worst thing you can do is deny the help your child needs. We all just want to see our babies thrive. Autism is not the end of the world. It is actually beautiful! Autistic brains are incredible, we should celebrate them! Not mourn the lives our children “could” have had. Now, this does not negate the negative things that come along with an autism diagnosis. It is hard. Autism is hard. There are things we will never be able to do or experience, as well as things my son will never be able to do or experience because of his diagnosis. However, harping on that will not make it better.

We went along with the appointment and I honestly didn’t think it would ever end. The doctor worked with David extensively to test his skills and check for certain clues to see if he was Autistic or not. She was able to diagnosis him by the end of the appointment with level 2 Autism. This was not a shock so it came as a relief. It was a bit more sobering to hear the words out loud, though. Having the finite diagnosis was a pretty significant moment. That moment became an anxiety riddled moment when she said he needed genetic testing and an EEG to see if he is having seizures since he lost some language. Seizures or genetic abnormalities never crossed my mind. This is what I meant when I said that the diagnosis was freeing, but also opened doors I never imagined.

We were handed a giant folder full of information and support groups, I was told a social worker would be calling to check on me, and given a list of hundreds of therapists in the area and sent on our way. I was told he needed to be enrolled in preschool by the time he was 3 and not given much say in the matter. This is when I realized I had to learn to use my voice for my son since he didn’t have one.

My son is nonverbal. He has no vocal vocabulary at all. He cannot say yes or no. He does not eBen fully understand the differences in certain motions, like nodding your head to answer yes or no. That’s super difficult. However, we got him in therapies as soon as we could. His ABA therapist (don’t @ me, I’ll explain the difference in good and bad ABA in a different post!) got him started with a binder to point to pictures to communicate. It’s been life changing, y’all! We are eventually going to work up to a device or his iPad, but the binder is just fine for now with such a limited selection since he’s only 3. He was in early intervention until 3. What he is not in, however, is preschool.

Now, no disrespect for parents that send their children to preschool. You are a rockstar! I am a stay at home mom, I had no interest in preschool anyway, but especially not once I found out David’s diagnosis. Yes, there are definite pros to preschool. However, I wanted to do private therapies instead because I am incredibly privileged to have wonderful health insurance through the Navy. We are so lucky we have no out of pocket costs for these private therapies. If we did not have that option, preschool would definitely have been a lifesaver. However, with my son not being able to talk to me, I did not want to send him somewhere that I wouldn’t be able to know if he were comfortable or not. Also, his delays have led to him being late to potty training, so I was not comfortable sending him as well. On top of all of that, we are a military family and are relocating very soon. I did not want him to deal with changing schools on top of Covid as well.

This has turned into a very long winded way of saying that the diagnosis is scary. All of those mixed emotions you are feeling are incredibly valid. However, be your child’s voice. Advocate for them. This is my experience and I’m honestly so glad I could go into the appointment with a pretty good idea what was wrong. I do understand that I am not the majority here, though.

I have Autism in my family and a background in psychology. I have studied these things and found them interesting for as long as I can remember. However, nothing can prepare you for finding out your child is special needs because until you have lived it, there’s nothing like it. Accept help. Read things like this blog and others to find your community. Find the niche of people that get you. That’s what I’m trying to do now.

There’s a contact me section on my home page. Please reach out with your stories of diagnosis and your thoughts. Let’s build our niche community here 💕

-Erica