So many ask about how we got his autism diagnosis.
There is no secret that our youngest, little G who is four years old, has been diagnosed with autism. It took 2 years of advocating and pushing to get an accurate diagnosis for him. I didn’t know for the longest time, what was going on but I knew something was wrong. He was struggling every minute of every day, and I felt helpless to help him.
I have been working up to writing this post for awhile now, but I have had an influx of direct messages recently asking about how we got his autism diagnosis.
So here we go, if I had to guess, this means I have a series on autism brewing.
Around G’s second birthday, I suspected he was delayed, but everyone kept telling me to just give him more time.
At that point, he only had 3 words in his vocabulary that he would use. It had been two years of him screaming nearly 15-20 hours a day. I knew he was frustrated because he couldn’t communicate, I had tried to teach him sign language and he wouldn’t pick it up. People kept telling me it was just a phase that would hopefully pass, but honestly I wish I had pushed sooner. This. Is. Not. Normal. Do not let anyone ever make you question your gut feeling, dear Mama. If you have a feeling something is going on, push and push until you find someone to help you.
My first step was to contact early intervention services in Florida and have an evaluation done.
Now these services will vary state by state. If you suspect something is going on with your child, I urge you to visit with your pediatrician and push for a referral of some sort. Most seem to want to take the wait and see approach, which I get to an extent. However through the years I have learned that we must be willing to advocate for our kiddos.
So we started with Early Steps, and he qualified for free once a week developmental therapy. They dismissed him around six months later, and looking back I realize that it was too soon to say he was caught up. You see, G has a very distinct pattern he follows, we just didn’t know it at the time. He catches up, and about 4 months later regresses again. It has been happening for years, but it took awhile for me to notice the pattern.
Around his third birthday is when I knew something was seriously wrong.
His meltdowns had always been what I would consider…epic. His teachers would laugh and say, “yeah he definitely get’s mad, but he takes it out on doors, walls, chairs, etc and we just let him work it out until he calms down”…
But his violence transitioned from being violent towards objects to people. He started flapping his arms, toe walking alot more frequently, and getting eye contact from him was getting harder and harder. It just felt way more obvious to me at that point, although I wasn’t sure what it was yet.
At this point he was in Montessori pre-k and having a hard time connecting with the work and the other students. It was breaking me, knowing something was going on but at this point I still wasn’t sure what. I am not sure if it was a little bit of denial or what.
I remember we were at Disney’s Magic kingdom in the spring of 2018 and G started to have intense fears about rides and major meltdowns.
He had basically grown up there, and we couldn’t figure out why all of the sudden he had this intense fear. I remember we were on main street when I first saw him arm flap where I had the thought that… “Oh my gosh, what if he is autistic?” I turned to my husband and whispered it to him, and he kind of just blew it off. “Oh maybe he is just really excited or something..”
You never want to think about your child being anything but perfectly typical. I mean who wants their child to struggle through life?
I have a way different perspective on autism, but before I was truly educated on it.. it felt like it was some sort of death sentence. Every time I asked someone about it, they would push it off and say something like “oh well lets not rush and give him any labels…”
Y’all. First off let me say this. Labels aren’t a bad thing if it means that your child gets access to services that will help them learn to navigate their little world easier.
Please, if there is one thing I beg of you. Do not let the fear of a label impede your pursuing evaluations. Early intervention truly is key, but I digress…
In October of 2018 we finally had an eval through the school system in Florida. You see, if a kid is ages 3-5 and there is a suspicion of a disability the school is required to find these kiddos and evaluate them to see if they qualify for early intervention services, yes in every single state.
In December 2018, I got my first moment of validation, I just didn’t realize this was just the beginning of a nearly year long fight.
At this point, I had asked at least 4 different professionals in my child’s life if something was off and everyone pretty much wanted to play the lets wait and see game.
They issued him an IEP and gave us the option to allow him to attend the pre-k class at the local elementary school, based on developmental delay and his social-communication delay. He started this class in January 2019. This same month we found out my husband was being offered a dream job back in my home state in Arkansas and not only that, but two companies were fighting over him. We knew that we had to come home. I knew needed the support something fierce at this time in our lives. I was struggling emotionally, physically, and I needed the support system that I didn’t have in Florida.
In February 2019 we moved from South Florida to Central Arkansas. This is when the game changed for us.
I did all the right things, and we contacted the school district here. Needless to say they didn’t want to fulfill his IEP requirements, and after doing their own evaluations on him they said there is no way he was delayed. I knew something was not right. You don’t go from his developmental delay just two months prior to being completely normal to the extent they were telling us. They ended up tricking us into giving up his IEP this last spring, however after getting outside evaluations done this summer we were able to come back and fight for his IEP and disability rights. It has been a battle, and I can’t say much more than that at this time.
It has been a fight and I will be the first one to admit that they do not like me. They have fought to invalidate everything up to this last IEP meeting that I have brought to them. During this last IEP meeting, we had a new member to our team, and that helped a ton. She worked hard to get things placed into his IEP to help support him not just now, but as he transitions to kindergarten.
To get his autism diagnosis we sought out an appointment at Dennis Developmental Center, which is located at Arkansas Children’s Hospital.
We found out that in order for an autism diagnosis to “count”, you need a three prong team diagnosis and what that means is the child needs to be evaluated by a Physician, Speech-Language pathologist and Psychologist. The wait list was long, and I called and emailed and was able to get us on a cancellation list with a star next to his name to get called for ANY last minute cancellations. It still took about 4 months, however it was going to take about 8 months. I hands down would have waited that long if we needed to, but we ended up getting a cancellation slot.
This very experienced team diagnosed him with autism without even second guessing it.
The physician who did his screening(which was about 2 hours long), told us she felt he was such a complicated case she felt he needed to see the team with the most experience in the clinic. They knew what they were looking for, and ya’ll, I have to admit I was relieved when they gave us his autism diagnosis. I felt less crazy, more validated. Especially after our battle with the local school district’s pre-k cooperative and their team acting as if I was making it all up. I cried from sheer relief.
When I started crying, the psychologist handed me tissues and told me that they knew this was a hard diagnosis to take in.
I stopped them right then, and told them I wasn’t crying from sadness. This doesn’t change who he is, it has always been apart of him. But now, we have answers, we can get him the help he needs. A label doesn’t change him. It doesn’t define him. It opens up resources that weren’t available to us, to him prior.
He was not your typical autism case they said, due to the fact that he is social. G makes jokes, he has a personality, he laughs. But he struggles deeply with rigidness and the way he thinks the world should be. The thing about him is, just because he is social doesn’t mean he isn’t socially delayed.
He has a social-communication language delay, meaning he now speaks and has a great vocabulary, but things don’t seem to connect sometimes in his brain when we are talking to him the way they should. For example, during his eval the psychologist was asking him questions about his little life and she asked if he thought he would ever get married. Without a beat he responded, “Yes! My mom wears lipstick every day!”
It’s the nonsensical answers he gives, and in his mind he is 100% answering the question. He also doesn’t use nonverbal cues often, and he misses alot of social cues from others. So if you have a child who you suspect is on the spectrum, but everyone swears they cant be because they are social, remember this.
An autistic child can be social, and still struggle socially.
My biggest advice for mamas is, if you feel something is off with your little. Start with your pediatrician, don’t delay. Ask other mamas in your area for recommendations on where to go for testing. I started with searching “Arkansas Autism Moms” in Facebook’s search bar and found our local autism families facebook group.
Whatever happens, stay the course. This journey has been the hardest of my life. Constantly feeling like others are making me feel crazy. But I am his mama, and I had to ultimately trust my mama intuition. Now he is in an incredible developmental preschool that he is flourishing in, he has an IEP, and we are getting ready to transition his IEP to a kindergarten IEP…(EEEEP! IM NOT READY Y’ALL!)
I pray your journey isn’t as hard as ours has been, but if it is… I encourage you to keep going. Keep fighting for your sweet child, they depend on you. It is worth it, that I can promise.
Stay tuned, in the coming weeks I will be writing about getting the diagnosis and now what… coping techniques and things we have found to help us through this new walk.
So, I guess this is the start of my autism series.
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I want to be sure and say this from the beginning, I have worked hard over the last few months to learn his autism diagnosis from other adults who are autistic. I will talk about what I have learned from them about how the general autistic community feel about certain topics I didn’t realize were even a thing. Such as saying things like “my son has autism” vs “my son is autistic”. We no longer force G to make eye contact, and he does now more than ever. It has to be on his terms, and the more I learn the more I realize that autism isn’t something wrong with my son, he is more than his autism diagnosis.
But his autism, is part of what makes him so incredibly special. You can read what he has to say about his autism diagnosis here.