How We Got Our Children Diagnosed with Autism and Early Intervention Options You Might Not Know About
I have three children, one girl and two boys. My two boys have Autism Spectrum Disorder. They were both diagnosed around the age of 2; however, the way in which both of were diagnosed was quite different. I am blessed to have family that are in the medical field, and both my sister-in-law and my own sister are registered nurses (my brother-in-law too). My other sister-in-law is a speech language pathologist, so she was also able to tell me what milestones for speech the boys should have had. It was a confusing time, because I had grown up with Autism in my family and yet, the boys presented differently from my youngest sister.
My youngest sister has profound Autism which means she will need 24/7 care throughout her lifetime (https://www.profoundautism.org/research/profound-autism-facts/). I wasn’t prepared as a parent for the signs of Autism, even though I had some knowledge growing up with an Autistic younger sibling. Even as a baby, my sister Jannel did not make eye contact. She would play happily by herself as a child and she never did learn how to talk. She can say her name, but not much else and she did not meet any of her baby milestones on time. Her gross and fine motor skills are also delayed, she has developmental delay and she can walk, but only for short distances. My mom and step-dad use a wheel chair when they travel with her now. She also has a wandering eye and facial features that are distinctive as well.
For my boys, they both met milestones such as sitting up, rolling over, crawling and walking. Adrian, the youngest, was even advanced in most of his gross and fine motor skills. The boys made eye contact and even began to talk on time. But Julian had a rough time as a baby. He had cradle-cap from head to toe, GI issues, and more ear infections than any human should. Unfortunately, that meant he had more rounds of antibiotics as a result. At 18 months is when we started seeing a change. He stopped making eye contact, no longer smiled for the camera, and preferred to play by himself. He also started toe-walking, spinning, putting his hands to his face to look at his fingers, and drooling uncontrollably. He would soak through his t-shirt with drool by mid-day. He also became dysregulated pretty easily and especially in crowded places – even Target.
Adrian presented differently. He was a “COVID baby”, meaning he was born right before the world shut-down. I came back to the office when my maternity leave was up, only to be told by our VP to go home and start working from home. I never did make it back to the office. Adrian did not have any of the allergy issues Julian did. He met his milestones on time, but then at 15 months, he got the second booster for the DTaP and two other vaccines and he stopped talking shortly thereafter. He also began having severe GI issues and diarrhea. Then the rashes from the diarrhea. He had about 25-30 words before he lost them all but two – mama and go. At one point, he lost all of his words and I also lost a lot of hope during that time-period. It would be another 21 months, almost 2 years later, before he regained his words again and at 5 years old today, he is now up to 2-3 word sentences with hundreds of words, although he is not conversational.
For my family, the signs were there and even though I had experience, I was still in denial. I had no idea there may be a genetic component, so I did not know there was 3-5% risk (Inherited Risk for Autism Through Maternal and Paternal Lineage) of my children having Autism, because my sister had it. The identification though wasn’t the hardest part for us. It was getting Julian’s pediatrician, at the time, to listen and to acknowledge our valid concerns without dismissing the concerns so quickly. There was also a lack of information provided by that same pediatrician when Julian finally received his diagnosis from a psychologist at 28 months. I later learned that our pediatrician at that time did not have specialized knowledge of Autism, and it was good that I trusted my intuition to get a second opinion. Here is a summary of what we learned to help parents and caregivers with identifying if their child is at risk for Autism Spectrum Disorder and what to do next. There are some great interventions which significantly impacted the goals we have for the boys and are also backed by medical research.
Number 1, if you are concerned about your child not meeting their milestones at the appropriate time frames, you can take a questionnaire online called the MCHAT-R (Modified Checklist for Autism in Toddlers – Revised). It’s free and there is research supporting the utilization of the checklist prior to diagnosis. There’s also a follow-up interview that can be administered after you complete the checklist called the “Follow-up”, where an interviewer will review the questions your child initially failed (https://drexel.edu/~/media/Files/autismInstitute/EDI/M-CHAT-R_F.ashx).
I learned about the questionnaire through Google, and I took the MCHAT-R online and brought the results to our pediatrician. We explained our concerns, but she quickly dismissed them after she handed him a numbers book during his 18-month wellness checkup. During the visit, he took the book from her and he was able to flip the pages and correctly say his numbers 1-9. I later learned that numbers and letters would be his obsessions and splinter skills, so although he could not “talk”, he was able to say the alphabet and count. My first pediatrician dismissed my concerns and said I was worrying about nothing and that we should wait and see until his next appointment. I did not wait, and I’m happy I didn’t, because the wait-list to get diagnosed was a long process and we didn’t end up getting our diagnosis until 28 months. If we did not move forward, we would have had to wait longer and Julian would not have gotten as much help with the early intervention programs sooner.
Number 2, if necessary, trust your instincts and get a second opinion. A neurologist, a developmental pediatrician, a psychologist and/or a psychiatrist, is able to clinically diagnose Autism Spectrum Disorder using diagnostic criteria such as the Battelle Development Inventory–3rd Edition (BDI-3) or Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM – 5). My family and I had seen a drastic change in my son between 12 months and 18 months, so I did not listen to sitting and waiting and got on a wait-list after reading that a psychologist could diagnose as early as 24 months. Unfortunately, that wait-list only opened up for our family at the age of 26 months, since the other psychologists, neurologists and developmental pediatricians in our area did not diagnose until 3 years old. The Autism criteria that our psychologist used at the time was the Battelle Developmental Inventory – 2nd Edition (BDI-2) and through questionnaires that he gave to my husband and I, as well as observations of Julian in the clinic, the assessment took more than one visit. By the time we finished and finally received our Autism Spectrum Disorder diagnosis, Julian was 28 months old. It would have been much later had we waited until the 24 months checkup at our next pediatrician’s appointment to start the wait-list.
I learned from the experience that the Modified Checklist for Autism in Toddlers – Revised (MCHAT-R) is a good risk indicator and that your health care provider should take your considerations and concerns seriously. Even if you find out later that your child does NOT meet the criteria of Autism Spectrum Disorder, it is not a waste of time to get checked. Once you have an official document that states where your child’s progress and behaviors were at that given time, it can become a baseline of clinical observations made by a trained third-party, which is valuable in the case your child ever regresses or improves. I have all the documents from each visit from each professional and those notes are so valuable to me now, in order to help his current health-care professional team understand his medical history to help him today.
I also learned how to speak up for my son when I disagreed with the doctor. She continued to use antibiotics after each ear infection, she did not give us much information after our Autism diagnosis, and she could not help with determining root causes for his allergies or constant illnesses every 2-3 weeks. My husband and I decided to get a new pediatrician – one with experience with Autism. We were lucky to find one in our area that also had a son on the Autism spectrum and are very grateful we trusted our intuition to get second opinions.
Number 3, if you don’t have any experience with Autism and you don’t have any family members or close friends in the medical field or with experience, there are reference guides and videos online. For my youngest son, we started seeing Autism symptoms and Autism signs as early as 15 months. At the time, it was really scary, because even though we knew what to look for this time, he presented differently than Julian. We had gone to the Kennedy Krieger institute for further assessment of Julian when he was 3 and they have a published video on YouTube you can reference for Autistic Behaviors and Autistic Symptoms: https://www.youtube.com/watch?v=YtvP5A5OHpU.
After watching the video, we realized that Adrian presented the same as some of the kids in the video, versus his brother Julian. Adrian also reached all of his milestones on time, if not early, with walking at 10 months and having about 15 words at 12 months, but at 15 months he stopped talking altogether. He never toe-walked and his gross motor skills were exceptional, but he became a very picky eater, when he used to at least try everything we put in front of him. He also became sensitive to sound, and would have to cover his ears during scary parts in movies or when loud music was played. He also became unbearable to leave with a babysitter and I couldn’t even work out at my local YMCA anymore, because he would have a melt-down if I left him in the daycare area for more than 5 minutes.
We did the MCHAT-R right away and he scored very high with a likelihood of risk to have Autism Spectrum Disorder (ASD). We also used another questionnaire called the Autism Treatment Evaluation Checklist (ATEC) that provides a score when you answer questions about speech, language, and communication; sociability; sensory and cognitive awareness; and health, physical and behavior. He stopped engaging with us, he stopped making eye contact and he stopped talking all at the same time. I brought it up to our new pediatrician and he was able to give me an Autism diagnosis at the age of 18 months.
Number 4, with a diagnosis, there are Early Interventions options that can be put in place to help a child with Autism learn, grow, and develop. Julian was able to attend early intervention through the city of Chesapeake and had a wonderful speech and occupational therapist that he saw once a week. I was very happy with his therapists and completely caught off-guard when I found out Early Intervention through the city ended at age 3. In preparation through aging out of the program, we completed his assessment for public preschool special education in November, about two months prior to his 3rd birthday. Timing is everything and it pays to work with the city’s social worker to ensure that you are completing the assessments needed at the appropriate times in order to plan for the transition and not miss any services or have down-time in-between.
I do not believe Julian would have made the progress he has made over the years and become as comfortable with the routine of school had we not gotten his diagnosis early and been able to utilize the Early Intervention program through the City of Chesapeake, Virginia. I then wondered how many parents were unable to obtain a diagnosis within the time frame of the program, and how many more families could be helped with this information.
Number 5, another program in addition to the typical Early Intervention therapies of Speech and Occupational therapy, is called Early Start Denver Model. Adrian had a similar start to Julian, where we were able to diagnose him early and get him into the Early Intervention programs with the City of Chesapeake, but we were able to also add this service to his routine as well. One key difference between the boys was that although Julian had an assessment with Early Start Denver Model with a certified practitioner, he did not get ESDM therapy, because they were located 1.5 hours away in Richmond, Virginia. For Adrian, we were lucky to find one therapist in the area when he was 2 and saw her for almost 6 months before she moved away to Hawaii. Early Start Denver Model is another early intervention protocol that many may not have heard about. I found it on one of those 3AM Google binges, probably after Julian was diagnosed and bought the book to read. It was created by Dr. Sally Rogers, Dr. Geraldine Dawson, and Dr. Laurie Vismara and even has several peer reviewed studies that showed improvement in both language and cognition when applied to children versus children without the therapy: https://pmc.ncbi.nlm.nih.gov/articles/PMC7349854/#abstract1.
Before I read the books and met the therapists, I wondered how it differed from other Autism therapies. In short, it is a play-based, relationship-focused, evidence-based intervention that helps to improve social, communication, and cognitive skills whereas speech therapy focuses on speech and language development and occupational therapy focuses on fine and gross motor skills, sensory processing, and daily living skills. The reason I ended-up reading the books with Julian, was because the assessment provided the basics of where to focus and how he scored, but the therapist was not local, so I tried to implement some of the therapies at home myself. In fact, there was another study conducted that showed “positive child-parent-related outcomes”: https://pmc.ncbi.nlm.nih.gov/articles/PMC8870866/.
Number 6, my oldest daughter is neurotypical and with her, I did not have to engage her as much in order for us to play together. What I’ve learned from ESDM as well as speech and occupational therapy is that kids learn when they play. Some symptoms of Autism include being content with playing with themselves, and for both Julian and Adrian, they were both very content to always play by themselves. It wasn’t until I received training from the therapists in Early Intervention, did I realize that I had to learn how to engage them and to play with them (which was not easy at first). I also had to learn, because ESDM was covered by insurance for Adrian, but not of Julian (the therapist from Richmond did not take insurance). I am grateful that I did learn, because doing so at an early age, has made them much more engaging as they have gotten older. They still prefer alone time, but I am able to follow them around, get at their level, and even by mimicking some of their stims (like spinning around with them), it makes them want to do even more with me. From there, the play becomes therapy in disguise and we can talk and I can read or share more language, communication, facial expressions, two-step/three-step directions and more.
Number 7, another useful Early Intervention program that uses play as a basis is Floor-time therapy. It took a while for me to find another therapist as good as the one that left us and taught us ESDM. Luckily, I found an Occupational Therapist that specializes in a play-based therapy called Floor-time. Floor-time was created by Drs. Stanley Greenspan and Dr. Serena Wieder that enhances and fosters emotional connection while helping with communication skills often by child-led interactions often on the floor. A study after reviewing 12 other studies: https://pmc.ncbi.nlm.nih.gov/articles/PMC10275467/ concluded that, “the results showed substantial progress in different levels of functioning of autistic children with Floor-time. This study showed home-based Floor-time improved emotive functioning, communication, and daily living skills.” It went on to state “the parent-child interactions were improved as expressed by mothers, and also certain demographic factors of the parents have significantly influenced the Floor-time outcome. There were no adverse events to children or parents during Floor-time.”
Number 8, there may be an opportunity to help diagnose earlier through detection using play in the near future. There is a research study that measures the visual-motor abilities of children by playing a table based bubble popping game: https://pmc.ncbi.nlm.nih.gov/articles/PMC9898502/ Results showed that, “the autistic participants exhibited a lower bubble popping rate…and their median distance to the center was larger.” In addition, it was observed that, “autistic participants had a longer average touch length… and showed greater variability in their touch length.” Lastly, they “found that the neurotypical participants took less time, on average, to pop a targeted bubble than autistic participants, as represented by the average time spent to pop a bubble.” What this means is in the future, an assessment could be given via phone or tablet for a child to play a game and have an output to measure the risk of Autism.
I am eternally grateful for my family to have been comfortable enough to voicing their concerns to me and my husband regarding Julian. I am grateful for listening to them and acting upon the concerns. I am also grateful for those that shared the videos on the Kennedy Krieger Institute video to help us ascertain Adrian’s risk and getting his diagnosis so early. With that information, AJ was able to get Early Start Denver Model therapy, Occupational and Speech therapy through Early Intervention, and is doing well with up to 2-3 word sentences and singing full songs at age 5.
In summary, you can do the following if you are concerned with the risk of Autistic symptoms and the diagnosis of Autism Spectrum Disorder with your child. I would:
1. Take the Modified Checklist for Autism in Toddlers – Revised (MCHAT-R) and/or the Autism Treatment Evaluation Checklist (ATEC) as a risk assessment to determine if my child is at risk for autism spectrum disorder. If you need help answering those questions, you can track your child’s behaviors over two weeks and write them down. It also helps to provide quantitative baseline data for the observed qualitative behaviors of your child at that point in time.
2. Next, I would take the results to my next pediatrician’s appointment and voice concerns to show the pediatrician about the possible autism symptoms that you are observing at home. If you need help additional help reviewing, you can refer to the YouTube video published by the Kennedy Krieger Institute in Maryland.
3. Finally, I would work on obtaining a diagnosis as early as possible. Note that a pediatrician’s diagnosis may not be accepted by everyone and all providers, insurance, ABA, OT, ST, Early Intervention through your city, and your public school system will need an official diagnosis. We were able to get our diagnosis from a psychologist, but a diagnosis can also come from a neurologist, developmental pediatrician, psychologist and/or psychiatrist. The criteria that they use to diagnose autism is an observational based assessment using the DSM-5 or the BDS- 3 criteria. Once you have a diagnosis then you are able to sign up for the early intervention program in your area and in the City of Chesapeake, Early intervention ends at the age of 3 when the child can be assessed for placement in the special education preschool.
When we were first diagnosed my original thought was I only have a very short window to help my children develop and the window is 0-5. Now that I’ve been on this journey for about 9 years, I have changed my way of thinking. I read the book: The Brain that Changes Itself and I'm so happy that I did because it allowed me to expand my thinking to know that just because my children aren't talking and fully conversational yet doesn't mean that they are closed off from learning for the rest of their lives. What I mean by that is, neuroplasticity shows that we can learn up until the day we die. Even though there are bursts of brain development as we continue to grow older, I know that the continued therapy, tutoring, spelling and overall love and care through play base opportunities will continue to help develop my children in the best way possible. So even if you don't get that diagnosis right at 18 months and you don't even get a diagnosis until they're 5, 6, 7 or 8 there is still hope. There is always hope.
