Is it autism? Here is where I shared the story of our son prior to his diagnosis. When we were questioning, but didn’t know where to begin and what to expect. My goal in sharing this intimate view into our lives is to help other parents in this situation. With 1 in 68 children diagnosed with Autism in the United States, this is more common that not. If you are looking for a list of symptoms for both babies and children, please see our list here. I am always here to listen, offer personal advice, or point you in the right direction . So feel free to reach out to me any time at [email protected]
During pregnancy, we all sign up for those cute little emails that tell us what size fruit our growing baby is that week. Once delivery comes, and you get to bring your sweet bundle home (not an apple or a pumpkin,but a beautiful baby), those emails change drastically. Now week by week, you find out how your child is developing. Every child develops and does new things at their own pace, this we know. Even so, there still is a normal time to hit those milestones. As the weeks turn into months, you begin to get emails about sitting, standing, crawling and walking. These mailings on how your child should be developing always come with a “Don’t worry if your little one hasn’t sat up yet, she’ll be there soon” type notes. At this point, asking is it autism happens.
As the first year passes, you start moving into doctor appointments that are several months apart. Soon, the eighteen month check up comes around. First, the nurse checks their height, weight, and head circumference. The she begins to ask you the “is he doing ____” questions. After walking to the room, she hands a piece of paper to you and asks you to fill it out while you’re waiting for the doctor.
The 18 month Check up
You start to fill the form out routinely, just as you have always done at these appointments. Checking each box yes or no, until your brain catches on. What is this form? You realize it is an autism checklist.
As you answer the close to thirty questions, you realize your child only had a couple in the “no” column. The doctor comes in, skims the list just a second and goes on with the appointment. By now, your child is screaming their head off. They’ve never done before at the doctors. The doctor reassure you that this is normal and he will outgrow it. He finishes his check up, as you do your best to hear him over the constant screaming . When you walk out into the waiting room and your child calms down immediately. So you go ahead and schedule that two-year checkup that seems so far away.
Emails Keep Coming, But Something is Different
At this point, the emails still come weekly. Always starting out something life “your 18 month and 2 week old.” You go on with life for the next month or so. Then it hits you like a freight train. You realize your son isn’t saying the words he used to be able to say. He’s not talking much at all, but has gained a couple new words. You’re concerned, but you reason with yourself thinking “Maybe this is normal.”
A week goes by, and you feel panicked inside. Even so, you don’t want to say anything. Your child is able to run now, and fast. So there’s always those times where he wants to dart off. You call his name, but no response. You call his name several more times in a row as you’re running after him, but he doesn’t even act like he heard you. Maybe something has caught his attention, you think to yourself. As you catch up with him, you catch your breath and ponder. You now realize, this isn’t the first time he hasn’t answered to his name. But is it autism?
Panic and Concern Set in
So you start trying to test it out. He’s standing there watching “Good Dinosaur.” You know, the only show he will watch and wants to watch three times a day? You realize he doesn’t respond to his name at all when you call. He doesn’t blink, or flinch at all. So you try loud noises, nothing. Then he looks at you, and you’re the one confused. Maybe his hearing is off? During this time, he takes a noisy toy and shakes it. He seems excited by the noise. Nope, he’s not deaf. So you go sit down. Your mind has red flags going up, but you don’t want to think too much into it. Then it happens…
He’s watching that same movie, and you notice it. He’s excited, he’s jumping up and down on his tip toes and his hands are flapping. Not just because he’s jumping or excited. No, it’s an action he doesn’t have control over or even notice. You sit and watch him. Thirty minutes go by, and you have been staring at your child the entire time. He’s doing weird finger movements near his eyes. In your heart, you know, but you don’t want to be right.
Worry turns into Action
That night, as you lay in bed, you look up autism symptoms for your child’s exact age. You know some about autism, as your little brother has it. Autism. It’s the reason why you refused to use any pesticides in your yard while pregnant. There were reports of it possibly causing autism and you weren’t going to risk it. As you flip through the articles of is it autism, you find a legitimate quiz. It’s only twenty questions so you go ahead and fill it out. You’ll learn these questions quite well. You will spend the next two weeks straight filling them out, hoping to get a different response. Sometimes you change the answer, just to see if maybe you are exaggerating a symptom somehow. The results never change by much. Either way, it always comes back with “High risk. You need to contact your pediatrician.”
The next day, you mention it to your husband. Not everything, just enough to test the waters and see what he thinks. His response is harsh and simple. “ There’s nothing wrong with him, he’s fine.” In the moment, you let it go. Why make a big fuss over nothing, right? Tomorrow comes and you talk with your best friend about your concerns. She tells you she’s seen those same things in your child too. She just didn’t know what it was or how to even approach it, but she reassure you that your concerns are valid. You get off the phone, suck it up, and you call the doctor’s office.
The First Phone Call
The receptionist puts you on hold so you can speak with the nurse. The nurse finally gets on the line and you start rambling your concerns. She does her best to help calm you down, as she knows you’ve obviously been holding back for a while now. She lets you know she’ll speak to the doctor and they will get back with you very soon. You get off the phone and sigh. There, it’s out. Now, all you can do is just wait. Now starts the wait to find out is it autism.
The Initial Wait
That day turned to-night, and night turns back into day quick enough. Early morning, your phone rings. It’s the doctor’s office. It’s the same sweet nurse that you spilled your soul out to yesterday. The nurse begins to tell you the doctor is very concerned. They tell you the doctor wants you to call the Autism Clinic immediately. You are given the number, and told if you do not get a response soon enough, to call them back.
So you call. They ask who referred you, they gather just the basic information like name, date of birth, and address. They tell you they are sending a packet in the mail that you need to fill out and quickly return back to them. Once they receive it, they will get back to you about scheduling an appointment within two weeks.
This is Our Story
As I am sure you have figured out, this is my life. Though as I write this, I can imagine that this has been many parents story. Not every child fits the “norm.” Sometimes, that is perfectly okay. Not everyone walks, talks, jumps, sings, or anything else at the exact same way as someone else. There are times though, that these “norms” not occurring, become the scariest thing when missed. I can tell you, I have been in a tailspin the last few months with the world quickly spinning around me.
There is so much information you can read up on now a days. One major development in the knowledge of autism, is that early intervention is possible. Now, diagnoses and intervention can start as early as eighteen months. That’s why doctors now give out that questionnaire for parents at check ups. Early intervention is key in reversing some things and help them catch up on others. So why, why do I have a six month difference for even testing! My mind is going crazy with questions. Will they see it? Is it in my head? Am I exaggerating? And so on.
Where We’re Going
So let me continue on where this journey is taking us. Once I received that packet in the mail, I sat down and answered the questions honestly. Even adding in notes where I felt it needed a better answer than just yes , rarely, or no. Sometimes was an answer. Occasionally was also one. Somewhere in between was several! Being the worry wart that I am, I decided I would fax the form back to them instead of mailing it. So I went to the library, put in my money and email address in the fax machine and sent it on its way. I received an email very shortly after confirming it had been successfully delivered.
Now, the two-week wait. With having other children, I know when a hospital or doctor’s office says within two weeks, well you’re lucky if they get to it by the end of two weeks. This was no exception. Two full weeks by, and then another. Finally, three weeks passed and I received a call. The lady this time was a lot more friendly than the first. She told me they wanted to get him in, the sooner the better. She pulls up her schedule and lets me know that the earliest appointment is in September. September will be when we find out the answer, is it autism?
Seriously, Three Months Away?!
Yup, September, and it just turned July. She tells me a date and time, saying they prefer to get little ones earlier in the day so they are not tired. I told her to just tell me a time and place and we will be there. I don’t want to bargain with dates. Just get him in the first time slot was honestly all I was thinking. After entering him into the schedule, she gives me a small glimmer of hope.
With September being extremely far away for his age, and early intervention is key, she wants him to get some immediate help. This is when she gives me the number to our local First Steps program, as well as a detailed agenda of what will happen. She said that First Steps would schedule an evaluation, that would be lengthy. The autism center will still do there’s, but will review First Steps as well, basically to tailor his test to him. She tells me she will be sending out several forms to fill out (a lot more questions) and it is important that I fill it out and get it back as fast as I can. When they have all the forms, if an opening comes up in the schedule, they will get him in sooner. Finally, I am feeling a little relief.
As I hang up the phone, I immediately began dialing the new number. At this point, I am slightly excited. Somehow, I manage to get a live person on the other end of the phone. The voice on the other end doesn’t necessarily seem overly friendly, but she asks the questions she needs to efficiently get the information needed. “Who referred me” and “what are the concerns.” After gathering the necessary information, she says she has an opening tomorrow for an initial interview. I tell her that will work great, get off the phone, and began scrubbing the main floor. Its summer with four kids, there’s really no other explanation needed there.
Is it autism?
Night comes quickly, and the morning even quicker. I was actually excited as we could start get him help, and sooner than expected. She arrives and I welcome her in. My son doesn’t acknowledge her existence, and goes on with putting his trains in a row. We go over what the program offers, sign a ton of forms, and she ask many questions. This thirty minute appointment felt like an eternity. Then, she asks the question, “ What is your biggest area of concern?” I think in my head, careful to not let my mouth spill out my thoughts: My biggest concern?! That my son may have autism?! Isn’t that why your here?!
The lady decides to clarify as I am sure my facial expressions spoke loudly my thoughts. We go over the different types of therapy they offer. The therapist we choose will then do the evaluation, so she needs to know which one I think is more appropriate. I decide to go with speech. Not quite sure why, but I didn’t know what else to say. She stated she will look which speech therapist will be available next and have her get in contact with me for the evaluation. This evaluation will take around two to three hours and she will text me the therapist information tomorrow.
Scheduling and Waiting
Tomorrow came and so did the text. Finally feeling like things are moving in the right direction. She lets me know the therapist name and that therapist will be in contact with me with in two days. I breathe. I don’t know what to expect other than a phone call, so I try not to think about it. Life goes on and my other children have things to do and keeping me constantly busy.
Life Goes On and Get’s really bumpy!
I take my youngest daughter to her doctor and leave all the others at home with my husband so I can focus on just her. She’s battled with anxiety, and her depression had kicked in more. Her doctor slightly raised her dosage, so we went to the pharmacy to pick it up. While waiting for her script, we walked the store. While she is looking at the toy aisle, I receive a call from my mom. We talk daily, though I mostly call her first. I say hi and she pauses. I ask is everything okay? She says no.
My grandfather passed away. Hearing this, it felt like someone hit me in the chest with a punching bag. She continues talking, but I don’t hear much. I tell her I am going to let her go for a little bit. My mind, it goes numb for a minute. The pharmacist announces over the speaker that our script is ready. We pay for our order and hurry out to the car. I can’t hold it in anymore.
Everything Seems to Always Happen At Once
When we get into the car, I lose it. My poor daughter is trying to understand what is wrong and why I am crying. My grandfather had just celebrated his 95th birthday. He had an amazing life, but man, it hurt. My grandfather was my hero. He stood 6’3”, was a navy man, and retired from the postal service many years before I was even born. One of those guys that loved his family, and everyone he met.
It hurt, and left me crying and asking why? Not just about him, but everything. Why was everything being turned upside down, and all at once?! I dropped my daughter off at home, told her to tell her Dad what happened and that I would be back. I went to a local parking lot, parked my car and cried. After a while, I called my best friend for comfort. She spoke the words my mind knew, but my heart just did not want to hear. I felt lost. My grandfather died, I don’t know whats going on with my daughter, and I don’t know any answers for what is going on with my son.
Plans Quickly Changed
Now, instead of vacation, I am planning a 500 mile trip the opposite direction. I knew my husband didn’t want the kids being so far away, so I planned to just drive my parents down south to the funeral. Our vacation was planned for the next week. I didn’t know how everything would work out, but knew it would.
I realized then, it had been around four business days since the lady from First Steps and I spoke last. So, I sent her a text, explaining briefly the situation. She texts back letting me she will have the therapist call me in the morning. The next day comes and I scurry along my day. As I am driving home, my phone rings. It’s a local number, so I answer assuming it would be her. It is. I briefly explain why I contacted and hurried her, but I knew we would not be available either way next week and didn’t want to miss her call. She understood, apologized for not getting back to me sooner. Then, she told me that she had cancellation at 2 pm. If I would be able to, she could come do the evaluation then. I quickly agreed and confirmed my address.
The First Steps Complete Evaluation
After ending the call, I realize that it is 1:15 pm. Yup, I just agreed to a two to three-hour evaluation in just forty-five minutes, at my home. So I told the girls I needed them to be self-sufficient, and not bother unless it was asking permission for something or an emergency. I hurried through the house and tidied everything I could. What I couldn’t, I shoved in my office and closed the door. Yes, we all do that at some time or another, so no shame there! I kept my son amused with the TV and snacks (yup, I let the TV babysit too) I lock the dogs on the other side of the gate so they can’t come into the living room. A nice little car pulls up. I know it must be her as it is now right at 2 pm.
The doorbell rings. I open the door and welcome her with a smile. She comes in, and says hi to my son who is now hiding behind me. He noticed her. From there, we started the evaluation. I left the TV going, assuming she would ask me to turn it off if necessary. I figured if this was going to be that long, some of the time would be just adults talking. She asked questions, and I gave answers. I felt myself rambling through many of the questions, but I did not want to forget something or leave anything out that might be important. She was very sweet. She tried to interact with my son, and noting many observations on her paper.
The Clock in Fast Forward
The time seemed to fly. After many pages of note taking, she pulled out several printed forms. She let me know that I seemed very knowledgeable and very observant with everything and it was quite helpful for her notes. Now, we were going to go through several list of yes, no, or rarely questions in five different categories.
My brain jumps around wondering what the last two hours were about, if we are now going to answer questionnaires. She tells me about the five categories. Cognition, Communication, Social-Emotional, Physical Development, and Adaptive Behavior. We start the first one. She asks a decent amount of questions, some of which she was able to answer based off observation and previous discussion. After a decent amount answered, she says that is all for the category and moves to the next list. She begins to ask her questions, gets about five questions in and says “ These don’t really apply to him, let’s move on.” This happens again in the next category. About five questions or so, then moves on. The fourth category seems a decent bit longer and I could answer yes to most. The fifth and final category seemed short as well, maybe eight questions or so.
She let me know she would put in her evaluation, and they would get back with the results. She stated they were about three weeks behind, so they should be ready by time I got back from my trips. I didn’t mention the evaluation to my husband, and the girls never brought it up. I continued on with life and planning the trip. Each night, my anxiety grew more and more. I have never been away from my son for more than a few hours a week at most. My husband grew very aware of my anxiety, and agree to let me take the kids with me, I felt so much better. It was going to be a very long few days for me, but at least I didn’t have to leave the kids at home.
The Long Trips
So, we got up early Sunday morning and drove straight through the 500 mile journey. Our van had been acting up, so my husband’s boss let us take a courtesy vehicle (he works at a dealership) for the long track. I was shocked at the generosity, but felt blessed. It was an eight passenger traverse, and man it drove so smooth. I have driven my father back home once before, so he was confident I would make it there in time for the visitation scheduled from 2-5 pm. The kids did amazing, and I managed to get down there and at the funeral parlor at 3 pm.
We had a world wind of 24 hours. We visited with family who we had been separated by states and continents over the years. I spoke a lot with my closest cousin, and enjoyed meeting his baby girl. You see, my cousin is quite possibly the coolest person in the world. Seriously. We have always had a connection, even though we rarely saw each other in the last 25 years. An amazing connection that has been so strong, that years have gone by without contact and we were able to pick up the conversation as if it was yesterday. His daughter is exactly one month to the day older than my son.
A Huge First
For the first time in his entire life, my son played with a child his own age. They laughed and ran and played the entire hour they could. As we were leaving to come home (24 hours after arriving), my son did something I’ve never seen before. He hugged my cousin’s daughter. It happened long enough that I was able to get a picture. This was and still is, very huge for him. He doesn’t play with kids his own age or even acknowledge their existence. This was a very big first. I guess those two have that same connection her dad and I have had since we were kids. Sometimes, the family bond is greater, greater than whatever is going on with my son.
We drove back home and arrived at around 1 am. It has been a very long, long journey. I carry the kids off to bed and I go to sleep myself. I was so exhausted that I don’t even remember getting to bed. We slept in, much later than planned. We spent a couple of hours just letting the kids play and loading the new bags into the car. Thankfully I planned ahead and backed bags separately for both trips. We headed out to vacation. A three-hour drive,that my husband drove all of as I couldn’t imagine driving for at least a week! Vacation went pretty smooth, it was a laid back camping style trip. Afterwards, we come home and move on with our lives. Waiting for a call.
A Week More Goes By
Another week goes by. I felt in my heart what I believed I already knew, but answers from a professional are still necessary. Before leaving for these trips, the therapist had told me that in order to qualify for their services, a child has to test at least half their age. She did mentioned that if that wasn’t the case and a child wasn’t that far behind, they could use their professional judgement to qualify him on an individual basis. I assumed this would be the case, that he would just barely qualify or not at all. So the wait continued.
As we enter into week three, I miss a call from the autism center. It is the lady in charge of the intake department. She was calling to get a copy of his First Steps evaluation. When I tried to call back, it went to voicemail. So I let her know that we had not yet received those results and that they were behind by about three weeks. With that being said, I let her know I would call and see if First Steps could fax the results directly to her when they received them.
After listening to the voicemail, I immediately called the director of First Steps to follow-up on that end. When she answered the phone, she let me know she had just received his results a few hours ago, but hadn’t had time to review it in detail. Once she got back to her home office, she would go over the results and get back to me to schedule a time to review the results together.
During this call, the lady from the autism center called me back. She let me know that she appreciated my call, that we still had a couple of weeks to get the results in, before the paperwork deadline. She went on to remind me the reason why they needed the results. It was basically a pre-screening. They use those results to then tailor his testing according to his individual areas of concern. While missing this call, right as I was getting off the phone with the First Steps director, she hit me with a simple sentence. Before getting off the phone, she said “We will go over the results in person, but he did qualify. We will discuss everything further at that time.”
As the phone call ended, my world stopped for a moment. “He qualified.” Not, he didn’t quite qualify, but we decided he could benefit from the help. Not he barely qualified. Just, he qualified. I tried not to over think it, but those words kept ringing in my head. He qualified.
The day turned to-night, and that night seemed so long. The next day, I received a call from the director to schedule the appointment. It was a Wednesday. She asked if I had any plans between now and the 9th. With being a busy parent, I let her know I had varying plans with the kids starting school, but we could figure something out. She asked about the following Monday, but that day just didn’t work. So she asked if Friday would work and I asked “Next Friday, or this Friday?” She confirmed this Friday, so I quickly said yes. At least I would get these results soon enough to send off to the autism center.
The First Steps Results
Friday afternoon came. I explained to my oldest who was home that day, that some people would be out to discuss something about her brother and I needed her to keep an eye on her sisters. She asked what it was about. I explained simply, that it was nothing concerning and I could explain better afterwards. I wasn’t sure how I could answer her when I wasn’t able to answer my own questions.
The director and therapist both arrived, and we sat down. She handed me two copies of the evaluation. They quickly started into explaining what the program offers. After agreeing to weekly speech therapy session and a few other sessions of occupational therapy, I began signing all the forms. The therapist scheduled to come out the following Wednesday to start his therapy.
The ladies went on their way, probably to their next appointments. It was only then did I realize we never looked at the results together. So I sat down and began to read the document, five full pages of observations. It was like reading a script from our last meeting, only narrated in someone else’s voice. I got to page four. This is where my heart sank.
Reading The Results
You see, page four contained the results of those questions she asked at the end of the evaluation. Those five different categories, clearly laid out before me. No longer was it a sweet narrative, but very clinical and straightforward statements. This is how it read:
- Age of testing: 21 months
- Cognition: 13 months
- Communication (overall) : 7 months
- Social-Emotional: 7 months
- Physical Development (overall) 17 months
- Adaptive Behavior: 11 months
Though my brain understood this information to be correct, the heart does not always catch up so quickly. I couldn’t speak, I felt like I could barely breathe. As I sat in my office, I reread those numbers over, and over, and over. It slowly sunk in, that my concerns were valid. My subconscious decision to choose speech therapy, when my brain didn’t know he was that far behind, was correct. 7 months. How do you wrap your head or heart around 7 months. This is more than half. This is saying his communication and social-emotional skills are at the level of an infant. He didn’t even crawl much at 7 months, he’s 21 months and testing at an infant’s level. I sat, and I cried. Not quite sure why, maybe it’s just an emotional release of what I couldn’t put into words.
Acceptance and More Waiting
It’s been a little over a week now, and I am still trying to grasp these results. We have had one therapy session so far. He did good, he tolerated a lot, all considering. Even though he is our fourth child, I had a hard time seeing him cry in frustration. My brain knew this would be a part or the process as this isn’t my first rodeo. Yet, my heart hurt and I just held him when it felt like too much.
Maybe it’s motherly instinct, maybe it’s fear. In that moment, I felt the answer of why. Why I have seen parents shelter their child who had any issues. I understood. It is an emotion, so raw, something that words can not fully justify. It just exists. Now I understand.
When your child doesn’t understand and they are crying in frustration, it is impossible to not want to fix everything for them. You can physically restrain from doing so, but that raw, powerful urge to comfort and protect, it will never ease up. They are your child.
So, Is it autism?
So a few days have gone by now. I’ve faxed off the evaluation. It was sent out before the paperwork deadline. Now we wait. The appointment is a month from now. We will have several therapy sessions before then. I reviewed the information, and the testing is scheduled for a 210 minute time slot. It is possible they will call to bring him in sooner, but this time, I can wait.
Though I don’t know the final diagnoses, I know my concerns were validated. My son is behind in areas, and have since talked with my husband about it. He is very understanding, agrees our son’s speech is behind and knows about the future testing. I explained to him that autism basically means they are behind. I know there is a much longer, more defined answer, but it was sufficient for him. One thing I have learned through the years watching my dad, my husband, and a friends husband, is dads have a hard time with acceptance. It’s not that they won’t accept a diagnoses or that something is off, it just takes them I little longer to get there.
Encouraging Words for Thought
My daughter’s psychiatrist described to us the qualifications of a disorder. Though it was in response to a question separate from our son, the answer still applies and will stick with me forever. She stated, “We only consider something a disorder when it interferes with that person’s life. If it doesn’t interfere, then it is not a disorder.”
The Answer to Is it Autism?
The answer to the question I asked of “Is it autism?” Is yes. Check out that post here. Here is the link for a list of signs and symptoms. To look up a wide array of articles on autism, use the links at the top of the page. We would love to have you continue your journey along with us. Feel free to reach out to us whenever with questions, comments, or just to vent. You can sign up for our weekly email list in the side bar.
Disclaimer: If you think your child is not hitting their milestones, losing words, or any other concerns, Contact Your Pediatrician Immediately. I am not a doctor or therapist. I am just another mom, starting this journey too.