The Autism Diagnosis Process in a Nutshell
How can an autism diagnosis change everything?
Have you come to the realization that your child might be "different", "unique", or "challenging"? Yeah, I've been there. It's a hard realization, trust me, but it's an important one to have with yourself. It's a constant, bitter, back-and-forth, mental tug-a-war game that propels through our minds as we watch our children age. This ride is an emotional one and it is not always easy.
Note to Self: You Will Make It Through
I guarantee that if you are reading this you suspect that your child may be on the spectrum one way or another. It may not be autism, it may be ADHD or any other mental diagnosis, but I also bet you're questioning yourself as a mother (or father). Here is your permission to stop doubting yourself.
You are their mother, father, caregiver, and/or guardian for a reason, you are their guiding light and they are your purpose. It's okay to wonder and it's okay to ask, evaluate, and assess. Regardless of whether you are "right" or "wrong" it does not matter. What matters is that you thought something was "off" and you took action. No one can fault you for that and no one can take away your piece of mind even if the result is not what you'd hoped for.
So, if you're in the suspect stage I bet you are wondering what's next. Today I am going to guide you through the process that we went through. Everyone's journey is different but the skeleton is all the same.
Here Is What We Know About Autism and Early Intervention
Studies have shown that the earlier children receive intervention and therapies the easier life and school can be for them in the future.
According to the NIH, "In this period, a young child's brain is still forming, meaning it is more "plastic" or changeable than at older ages. Because of this plasticity, treatments have a better chance of being effective in the longer term."
Therefore, the sooner a child gets help the more likely they are to reach developmental milestones quicker.
My Experience with Early Intervention
For my son, it started around 15 months. I first noticed toe-walking which isn't really a sign of autism, but it caused me some concern. I started asking myself questions and comparing my son to my friend's children. This led to even more "Ah-Ha" moments that I didn't think too much about before since I was a first-time mama.
Once I observed those children and then my son, I found it odd that Ellis barely spoke, never responded to his name, lined toys up, color-coded, and only played with the wheels of trucks/cars.
Of course, I jumped to the internet and the noun "autism" popped up in everything! We started by telling our doctor our concerns and that's when early intervention came into play which is also called birth to three.
Birth to Three
The program birth to three may have different names in different places such as infants and toddlers, early intervention, before pre-k, or whatever your local community calls it but they all have the same purpose and that is to provide educational and therapeutic services to children.
These services may include occupational therapy, physical therapy, speech therapy, ABA therapy, food therapy, and special education. Let's go through the meaning of each before we go any further.
Occupational Therapy (also known as OT) is a therapy where fine motor and sensory issues are addressed through different therapeutic strategies. OTs may help your child with daily life activities such as dressing, toileting, feeding, and bathing or they may assist with fine motor skills such as writing, cutting, pointing, threading, etc. Another side of OT deals with sensory issues where the therapist will present different types of textures to the child to help with different sensory tolerances and feedback. You can read more about OT's here.
Physical Therapy (also known as PT) is another therapy that addresses gross motor skills such as jumping, walking, running, throwing, catching, etc. They also address patterns in gait and obstacles that a child may encounter in their daily life such as climbing the stairs, sitting in a chair or crisscrossing, or even safety issues like crossing the street. If there are more issues anatomically a PT will also help alleviate pain and increase strength.
Speech Therapy helps children with communication whether it's building on vocabulary, enhancing speech, providing alternatives to spoken language, or a mixture of everything listed.
Applied Behavioral Analysis (known more commonly as ABA) is another type of therapy that could be offered in the program but also may not be due to certain insurance restrictions. According to The Arc, "uses basic behavior principles to reinforce wanted behavior (including learning, verbal behavior, etc.) and decrease unwanted behavior (including challenging behavior, tantrums,etc.). "These therapists are saints and if you're dealing with major behavioral issues then this therapy is the gold standard.
Food Therapy may also be offered and they work with your child to make food and nutrition fun and meaningful. Again this may be an insurance issue but I do know some OTs have the training.
Special Education is another service that will be provided and this helps with classroom management, social skills, academic achievement, and daily routines. The special education teacher's job is to make sure all IEP or IFSP requirements are being met and provide that educational support so that the child is adapting and progressing academically.
How Does the Early Intervention Process Work?
After you have gotten the script from your doctor, then you make contact with your local Birth to Three program. Once you get ahold of them they will schedule an initial meeting and evaluation process. There they will meet the family and get to know your child. Sometimes they continue and complete the evaluations and then other times they pick a different day and each specific therapist will complete a separate evaluation to see if the child qualifies.
Sometimes a child can qualify for all and sometimes it's just one. Now that he is evaluated they will then schedule to meet weekly or monthly depending on how much time the service provider feels the child needs and after that therapy starts. This will continue until the child is dismissed from services or it will continue into school age.
What About an Actual Diagnosis?
So, this is where it gets lengthy. If your child's primary doctor thinks there is an issue then that doctor can request birth to Three, but that doctor cannot place an "autism" diagnosis on the child. The doctors who evaluate for autism are either child psychiatrists or psychologists, pediatric neurologists, or developmental pediatricians. I highly recommend going to a research hospital with an autism center such as Johns Hopkins University or Boston Children's Hospital.
Once the doctor sends the referral or you self-refer, you will need to complete a large amount of paperwork. As if you haven't already, you will answer continuous questions that basically have the same answers and although it gets annoying and sometimes upsetting you must continue the course. I promise it's worth it. After you have finished the paperwork, you wait.
It depends on the hospital and it depends on the waitlist but you could wait anywhere from 2 months-2 years to meet with the evaluating doctor. My recommendation is to submit to more than one hospital. We submitted two: Johns Hopkins and West Virginia University, but there are many.
After contact is made by a scheduler you will probably have to fill out more paperwork but the date has now been set. On that date, you will travel and go into a room with your doctor. Some moms have told stories about being behind the glass window watching but that was not our experience.
Our doctor was absolutely amazing. She greeted us and introduced herself to us and then to Ellis. She got down on his level and pulled out a few toys. She told us not to intervene with play but if he came to us then do what we normally do. She watched and interacted for about 90 minutes. After those 90 minutes, she let Ellis play and proceeded to ask us a bunch of questions about him, our family, and ourselves. She then excused herself to type a bunch of stuff on her computer and then came back with the official diagnosis.
The process was not scary or intimidating at all. With that, we had a paper diagnosis.
How Did You Feel Afterwards?
I think with every parent it feels different, but for me, it was a relief. What you need to understand is that your resources are limited without a doctor's diagnosis on paper. You need that to get everything your child needs to succeed. I hate to say this, but the more specific the better. We learned a lot during that evaluation such as the tiers of autism.
In the past, there were specific names such as Asbergers, but now they go by a 3 tiered system.
ASD Level 1 Mild: this is the lowest classification meaning the child will need some therapeutical intervention
ASD Level 2 Moderate: this classification is where others may notice differences and individuals may have issues with spoken communication, have specific interests, and exhibit repetitive behaviors
ASD Level 3 Severe: this is obviously the most challenging and these individuals demonstrate the same characteristics as levels 1 and 2 but have limited social skills and limited ability to communicate
Our doctor continued to explain that these levels are for services and insurance purposes and that not one person fits a tiered model which made me feel good.
And that's it! That's the process.
A Checklist for Success
After all we have been through I decided my first post would be a checklist.
So, here is step number one.
1. Talk to your doctor.
We scheduled an appointment and voiced our concerns. During that appointment we answered a questionnaire about his development then we inquired about a hearing test. Of course, he passed the hearing screening twice but at least we checked that off the list. Once his hearing was good to go, we decided to go ahead and get a referral to head to a specialist, but we also signed up for a birth-3 program while we were there.
2. Enroll in a Birth to 3 Program
A birth-3 program is a program where therapists and education specialist(s) come together and provide your child with resources and a therapist he or she may need. For Ellis, a physical therapist (PT), occupational therapist (OT), and speech therapist came to our house and completed an evaluation as a group. It was a lot of people but he ended up qualifying for speech and OT.
The beauty about birth-3 is that you don't necessarily need a diagnosis from a specialist you just need a referral from your child's pediatrician. This program is great because getting into a specialist can take a while. Most waitlists are 6 months to a year waitlist, so you want to get as much help as possible even before the diagnosis.
Birth-3 has done so much for Ellis and his progress. He consistently participates in speech and OT weekly for 45 minutes each. We learned multiple means of communication and ways to progress, so this really is a crucial step. Plus, in birth-3 your child will be on an IFSP which will then roll over to an IEP in the school system, so schools are mandated to follow all accommodations and supports on that document.
3. Complete all the Forms
Once you get the referral, you will want to decide where to send it to. We picked two places and we decided that whichever one saw him first we would go with and that's what happened. It was a 7-9 month wait for both but we did get in.
This was the worst part. Paperwork after paperwork reminds you of what's going on. Some of it is depressing, time-consuming, and redundant but remember it's for a greater purpose and it's necessary to get one step closer to gathering all the resources you need for your child.
4. Wait for the Call
This was awful! Waiting and waiting was the name of the game until one day the phone rang and then the process began. However, keep checking to make sure your name is on the list. The more you call, the more you will be reminded that you are one step closer to being seen. COVID really did a number with waitlists.
5. Meet the Autism Specialist
Once you finally get in the doors, you will be surprised at how informal the process is. I literally thought my son would be interacting with a complete stranger as I watched behind a glass window, but that was not the case in our experience. We were in the room with Ellis every step of the way, but it was hard not to give in to his every want and need. The doctor asked me to back off one time (which is great for me) and she continued to interact with him.
The session lasted 2 hours. Most of it was her performing play therapy, then the interview, and finally the Q&A. After the interview, she looked at her notes and told us what I had known for 15 months. "Your son has autism". It was pretty hard to hear, even to this day I still tear up from time to time, but I knew it had to be written down and heard.
She explained that Ellis was being diagnosed with mild-moderate non-verbal autism and that he would need to have support in place for him as long as he needed it. She also explained that at any time his condition could change because he was so young at the time of evaluation and she would like to monitor him trimonthly. Most do not receive an IQ until they are 5 years of age so we aren't sure of his development in that respect.
Getting an Autism Diagnosis is Beneficial
Like I said before, you may be on the fence about getting your child evaluated for autism but I encourage you that if you think there is a problem it is worth getting evaluated. Through all of this, the one piece of advice everyone has given me is that early intervention is crucial to success. Ellis started intervention at 18 months of age and now at 3 years old we already see so much progress from a communication perspective to social encounters. I am extremely proud of myself for listening to my gut and not others around me, and I encourage you to do the same.
Take the Steps to an Autism Diagnosis
Getting an autism diagnosis changed our lives. We stopped living in the "what ifs" and started living in the now. We met Ellis where he was instead of comparing him to others all the time and having that document that says "autism" has relieved a lot of our stressors.
Autism is a very atypical life for all of us, but knowing that Ellis thinks and sees the world differently is okay with me, knowing that school and places will accommodate him for success is an even better feeling. Autism diagnosis steps are easy, the rest is hard.
Xo,
Erica
Comments