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Our journey with our son began when he was diagnosed with level 3 nonverbal autism at the tender age of 2.5. It was a pivotal moment that brought both challenges and opportunities for growth. In this heartfelt blog post, I’m excited to open up about our experiences navigating his autism diagnosis and the incredible progress he’s made on his unique path to communication. From those early days filled with uncertainty to the joyous milestone of hearing his first words at the age of 4.5, our journey has been nothing short of remarkable. Join me as I share the highs, the lows, and everything in between, celebrating the beautiful journey of our son’s growth and development.
Previously, I was a speech therapist. I’m not a practicing speech therapist now, however I have some direct experience working with nonspeaking and minimally verbal individuals. I believe that my speech pathology background gave me a different perspective throughout this journey of my own son (although I don’t think it was any easier). I hope to share some information about non verbal autism, but also give you hope if you are here looking for it. Let’s get started with just some of the basics:
What is Nonverbal Autism?
Autism, also known as Autism Spectrum Disorder (ASD), is a neurodevelopmental disorder that affects how a person perceives and interacts with the world around them. It is characterized by difficulties in social communication and interaction, as well as restricted and repetitive patterns of behavior, interests, or activities.
Autism is a spectrum disorder, this just means that it affects individuals differently and to varying degrees. Some individuals with autism may have mild symptoms and be able to live independently, while others may have more severe challenges that require support and assistance throughout their lives.
Nonverbal autism is a subtype or variation of autism spectrum disorder (ASD). It refers to individuals with autism who have significant difficulties or delays in developing spoken language and may rely on alternative forms of communication to express their needs, thoughts, and feelings.
It is estimated that about 30% of autistic people are also nonverbal.
While autism is characterized by challenges in social communication and interaction, individuals with nonverbal autism have particular difficulties in acquiring and using spoken language. They may have limited or no functional speech, and their ability to understand and use verbal communication may be significantly impaired.
Nonverbal autism is a descriptive term that highlights the communication challenges faced by individuals on the autism spectrum. However, it does not define the individual’s abilities, intelligence, or potential for growth.
Many nonverbal individuals with autism have unique strengths and talents and can make progress in various areas with appropriate support, interventions, and alternative communication methods.
Each individual with nonverbal autism is unique, and their communication abilities and needs may vary. It is essential to provide individualized support and interventions tailored to their specific strengths and challenges to help them communicate effectively and participate fully in their daily lives.
First Symptoms of Nonverbal Autism
With our son, he had a type of autism called “regressive autism.” This means that he had some skills like waving and babbling that he lost overtime. It was a somewhat slow regression, so it was hard to say when it started exactly. Up until 18 months, I would say that he was typically developing except for his speech.
He was babbling and saying “dada” and then we realized one day that he hadn’t heard his voice that day. I made this video sharing some of the first signs of autism that we did noticed by the age of two.
I have some video of him walking in circles one day, but this really didn’t happen daily so it wasn’t anything alarming. I also have video of him shuffling some wood chips at the playground. At one point, he would also walk the perimeter of the playground instead of wanting to play – although later he loved to slide and swing.
He also would try to “elope” or run away from us and then wouldn’t respond to his name being called or us saying “stop!”
But the biggest sign was just his lack of speech development.
Common characteristics and symptoms of autism may include:
1. Social Communication Challenges:
Difficulty with verbal and nonverbal communication, such as understanding and using gestures, facial expressions, and tone of voice. Some individuals may have delayed speech or struggle with initiating or maintaining conversations.
2. Social Interaction Difficulties:
Difficulty with social interactions and forming relationships. Individuals with autism may have difficulty understanding social cues, making eye contact, or engaging in reciprocal conversations.
3. Restricted and Repetitive Behaviors:
Engaging in repetitive behaviors or having specific interests or routines. This can include repetitive movements (e.g., hand-flapping), insistence on sameness, intense focus on specific topics, or repetitive play patterns.
4. Sensory Sensitivities:
Heightened or reduced sensitivity to sensory stimuli, such as sound, light, touch, or taste. Some individuals with autism may be hypersensitive and easily overwhelmed by sensory input, while others may seek sensory stimulation. With our son, he was more of a “sensory avoider.”
Because every autistic person is an individual, it’s crucial to approach autism with understanding, acceptance, and support. Each individual with autism is unique and may have different strengths and challenges.
How is autism diagnosed?
Autism is typically diagnosed through a comprehensive evaluation conducted by a team of professionals, including psychologists, developmental pediatricians, speech-language pathologists, and other specialists experienced in diagnosing autism spectrum disorder (ASD).
The autism diagnostic process involves several steps:
1. Developmental Screening: The first step is often a routine developmental screening during well-child check-ups. This screening helps identify any developmental concerns or delays that may warrant further evaluation.
2. Diagnostic Evaluation: If concerns are raised during the developmental screening or if parents, caregivers, or teachers observe significant developmental differences or challenges, a comprehensive diagnostic evaluation is conducted. This evaluation involves gathering information from multiple sources, including parents, caregivers, and teachers, through interviews and questionnaires.
3. Observation and Assessment: The diagnostic team will observe the individual’s behavior, social interactions, communication skills, and play patterns. They may also conduct standardized assessments and tests to evaluate various areas of development, including communication, social skills, cognitive abilities, and behavior.
4. Diagnostic Criteria: The diagnostic team will compare the individual’s observed behaviors and assessment results to the diagnostic criteria outlined in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), which is widely used for diagnosing autism. The DSM-5 criteria include difficulties in social communication and interaction, as well as restricted and repetitive patterns of behavior, interests, or activities.
5. Differential Diagnosis: The diagnostic team will also consider other possible explanations for the observed behaviors and rule out other conditions or disorders that may present similar symptoms. This helps ensure an accurate diagnosis and appropriate intervention planning.
6. Feedback and Diagnosis: Once the evaluation is complete, the diagnostic team will provide feedback to the individual and their family, explaining the findings and whether the criteria for an autism spectrum disorder diagnosis are met. They will also discuss recommendations for intervention, support, and resources.
Early Diagnosis of Autism
The diagnostic process may vary depending on the age of the individual being evaluated and the availability of specialized professionals in the area. Since our son was so young, we went through our local children’s hospital and had a really great experience.
We did have to wait 6-9 months for the autism evaluation, but the actual process only took one day. I was really worried how our son would handle it being so young, but it was really a lot of play and observation.
I’m really thankful that we did get his diagnosis so early. All the research shows that early diagnosis and intervention are crucial for individuals with autism. Having that diagnosis allows for early intervention services and support to be implemented, promoting optimal development and improved outcomes.
How many people are diagnosed with Autism each year?
According to estimates from the Centers for Disease Control and Prevention (CDC), approximately 1 in 36 children has been identified with autism spectrum disorder (ASD) in the United States. This is an increase from the previous rate of 1 in 44 children.
In terms of adults, it is estimated that over 5.4 million adults in the United States have a diagnosed autism spectrum disorder. The prevalence of autism in adults is approximately 2.2% according to the CDC’s data.
Globally, it is estimated that about 1% of the world’s population, which is approximately 75 million people, has autism spectrum disorder.
What percentage of people diagnosed with Autism are non speaking?
The percentage of individuals diagnosed with autism who are non-speaking varies widely depending on the definition used for non-speaking and the population studied. Estimates suggest that approximately 25% to 30% of individuals with autism spectrum disorder (ASD) may be non-verbal or minimally verbal.
First Interventions after our Autism Diagnosis
Even before my son was diagnosed with autism, we knew that he was language delayed. While we were waiting to get him into therapy, I started working with him with teaching sign-language and using flashcards to prompt labeling and saying words.
Once we were able to get in home therapy set up for him, he started with speech and occupational therapy. Because of long wait lists and limited spots, he could only be seen once or twice a week for therapy.
During this time, we didn’t see much progress – if any at all. Most of this time was really focusing on finding supports and figuring out what our therapy options were to get him more help.
What are the Most Popular Therapy options for Nonverbal Autism
When it comes to the different therapy options for individuals with nonverbal autism, there are several approaches that can be beneficial in promoting communication skills, social interaction, and overall development. The most popular therapy options for nonverbal autism include:
1. Augmentative and Alternative Communication (AAC):
AAC involves the use of tools and strategies to support communication for individuals with limited or no functional speech. This can include picture exchange communication systems (PECS), communication boards, sign language, or electronic devices with speech-generating capabilities. AAC helps individuals with nonverbal autism express their needs, thoughts, and feelings effectively.
2. Applied Behavior Analysis (ABA):
ABA is a widely used therapy approach that focuses on understanding and modifying behavior through positive reinforcement and systematic teaching methods. ABA can be tailored to address communication challenges in nonverbal individuals with autism, helping them acquire functional communication skills and reducing problem behaviors.
3. Speech and Language Therapy:
Speech and language therapy aims to improve communication skills, including speech production, receptive and expressive language, and social communication. Speech therapists work with nonverbal individuals to develop alternative communication methods, improve articulation, and enhance overall communication abilities.
4. Occupational Therapy (OT):
OT focuses on developing skills necessary for daily living, fine motor coordination, sensory integration, and self-regulation. For nonverbal individuals with autism, OT can help improve motor skills, sensory processing, and self-help skills, which can indirectly support communication and overall development.
5. Social Skills Training:
Social skills training helps individuals with nonverbal autism develop appropriate social interaction skills, such as turn-taking, initiating and maintaining conversations, understanding nonverbal cues, and building relationships. This therapy often involves structured activities, role-playing, and group interactions to practice social skills in a supportive environment.
6. Picture Exchange Communication System (PECS):
PECS is a specific form of AAC that uses visual symbols to support communication. It involves teaching individuals to exchange pictures or symbols to make requests, comment, or engage in social interactions. PECS can be effective in promoting communication skills for nonverbal individuals with autism.
Developmental Preschools for Autism
With our son, after a few months of waiting, he was able to go to a developmental preschool (Early Intervention Day Treatment (EIDT)) that provided all his therapy during the day. This was the type of treatment plan that the professionals who diagnosed him believed would be the best option for his development. As a parent, I loved that everything was play based and focused on collaboration between all the therapy professionals.
A developmental preschool, also known as an early childhood development center or early intervention program, is a specialized educational setting designed to support the developmental needs of young children, typically between the ages of three and five years old. These programs are specifically tailored to provide comprehensive services and support to children who may have developmental delays, disabilities, or other special needs.
Key features of developmental preschools include:
- Individualized instruction: Developmental preschools often provide individualized instruction and support tailored to each child’s unique needs, abilities, and developmental goals. This may involve a combination of structured activities, play-based learning, and therapeutic interventions.
- Early intervention services: Developmental preschools may offer early intervention services aimed at addressing developmental delays or disabilities as early as possible to maximize the child’s potential for growth and development. This may include speech therapy, occupational therapy, physical therapy, and other specialized services provided by trained professionals.
- Multidisciplinary approach: Developmental preschools typically employ a multidisciplinary team of educators, therapists, and other professionals who work collaboratively to support the child’s overall development. This interdisciplinary approach ensures that the child receives comprehensive support across various domains, including cognitive, social-emotional, communication, and motor skills.
- Inclusive environment: Many developmental preschools strive to create inclusive environments where children of all abilities learn and play together. Inclusive settings promote socialization, acceptance, and understanding among children with and without disabilities, fostering a sense of belonging and community.
- Parent involvement: Developmental preschools often emphasize the importance of parent involvement and collaboration in the child’s education and development. Parents may participate in parent education workshops, family support groups, and individualized family service planning to support their child’s learning and development both at school and at home.
Overall, developmental preschools play a crucial role in providing early intervention and support to young children with developmental delays or disabilities, helping them reach their full potential and prepare for future success in school and beyond. I fully believe that the progress that we saw in our son was impacted by the support and therapies he was able to get through our local developmental preschool.
This was a tough decision for him to basically go to school full time at 3 years old, but it has honestly been the biggest blessing to our family and his progress is the best indication that it was the right choice for him.
Alternative Communication Options for Nonverbal Autism
Nonverbal individuals with autism often rely on alternative communication methods to express themselves. These methods can include:
1. Augmentative and Alternative Communication (AAC): This includes the use of tools and strategies such as picture exchange communication systems (PECS), communication boards, sign language, or electronic devices with speech-generating capabilities.
2. Gestures and Body Language: Nonverbal individuals with autism may use gestures, pointing, or other forms of body language to communicate their needs or preferences.
3. Visual Supports: Visual supports, such as visual schedules, social stories, or visual cues, can help individuals with nonverbal autism understand and navigate their environment.
Since communication was such a big concern for us, we trialed a few different options before landing on the AAC communication device. Before he even started school, I tried teaching him a few sign language signs. The only ones that he really used were “all done” and “more.” We later learned that he really struggled with mimicking body movements and needed a lot of prompts to learn “high fives” and pointing. This is a good option for some though.
PECs was trialed first at preschool when he was about 3 with his classroom teacher as well as speech therapist. He didn’t really take to it, so after a few months they introduced some other communication options.
I created and printed some picture cards that we used around the house. Mostly so that he could point to them and tell us what he wanted to eat. He used it for a few months I think, but then he found it easier just to point to the food he wanted and not the picture.
Pointing was really a huge communication leap for him. Once he learned that skill and could point to what he wanted, it really was a big first step for all of us and reduced a lot of frustration. I think once he realized that connection between making a request (like pointing) and then getting what you want, it made it easier for him to request things on his iPad too.
When our son turned 4, his speech therapist started trialing an iPad with the Lamp Words For Life App on it during therapy sessions. She said that he really engaged with it quickly and encouraged us to buy him an iPad with the APP so he could start working on it more in therapy and at home.
For Christmas that year, we bought him the iPad and installed the LAMP app on it – and we were honestly surprised what he already knew how to spell!
Our therapist said that one big skill that they usually have to teach kids first is that they need to bring the iPad with them as they move around the classroom. Our son honestly had no issues with connecting with the iPad. We think he may also be hyperlexic (which just means that he is more attentive and possible more advanced in spelling and written words). I think that this characteristic made him attracted to the iPad and the spelling function on the LAMP app specifically.
Technology that supports Nonverbal Autism
As recommended by his therapist, we bought a standard mini iPad and installed a speech generation app on it called LAMP Words for Life. This is not the only app available for speech. Another really popular speech generation app is Proloquo2Go.
If you are working with a speech therapist, they may have different apps your child can trial to see what they prefer. We were really thankful that our therapist had experience with AAC and helped us with the whole getting started process.
First Words at 4.5 years after Nonverbal Autism
I have heard from many moms that their children who started talked later after a nonverbal autism diagnosis described their child’s speech development very similar to what you would expect in typical language development.
Our son was exactly the same. I first started noticing that he was babbling more and with more variety of sounds. Then, he started using those babbling sounds to start “singing” with the tune of his favorite nursery rhymes.
Then one day, he actually said his first words! I grabbed my camera so I could get it on video and remember this moment.
I wanted to keep encouraging him to say more words throughout the day. When he would be in the bath tub, I would sing a song he loved and pause for a word to see if he would say it. To my surprise, when I sang “Old McDonald” he could say almost all of the animals.
One day when I picked him up from school, I met his tech outside and she had a list of 25 words that he said in therapy that day!
“Carrot” “Cookie” “Kitchen” “Car” “Monkey” “Banana” “Broccoli” “Cat” “Dog” “Eat” “Cranberries” “Again” “Ketchup” “Hey!” “No!” “Bubbles” “Music” “Ball” “Bye” “Jump”
From that day on, he has continued to say more words and some phrases. He is still in therapy to support his language development and he still uses his iPad to reduce frustration if he is unable to say what he wants. He is still working on articulation (the formation of clear and distinct sounds in speech.)
One thing that he still loves to do on his iPad is type our the lyrics to his favorite songs. He will type out every word to “This old man” “The ants go marching” and “Old McDonald.”
How many people with Nonverbal Autism start speaking?
The ability of individuals with nonverbal autism to develop speech varies greatly depending on a range of factors, including the individual’s level of cognitive functioning, the presence of co-occurring conditions, the effectiveness of interventions and therapies, and individual differences in neurodevelopment.
While some individuals with nonverbal autism may eventually develop spoken language, it’s difficult to provide a specific percentage or estimate of how many achieve this milestone.
Research suggests that early intervention, intensive speech therapy, and communication supports can be beneficial for many individuals with autism spectrum disorder (ASD), including those who are nonverbal or minimally verbal.
This study by the Center for Autism and Related Disorders in Baltimore, showed that almost 70% of the children studied could speak in simple phrases after being nonverbal at age 4. 47% of these children developed fluent speech after age 4.
Some individuals may make significant progress in developing verbal communication skills with appropriate interventions, while others may continue to rely on alternative forms of communication such as augmentative and alternative communication (AAC) systems.
Continued Support for Autistic Individuals
I think the most important thing to remember is that autism is considered an invisible disability – this means that you may not be able to tell if someone is autistic just by looking at them.
When my son started speaking, it did reduce a lot of the frustration that we all felt when trying to communicate. I would encourage any family who has a child with nonverbal autism to explore any communication avenue to see what is going to work best for your child and your family.
Every child is unique and every family is too.
More Resources
The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism
The Autism Community in Action
Autism and Sugar Cravings: is there a Connection?
Service Dogs for Autism Support
Activities to Encourage Speech and Language at Home
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