Author’s note– I use identity-first language (e.g., autistic person) in this blog post as many autistic adults have said they prefer- in lieu of person first (e.g., a person with autism). If you want more info on this, go check out this amazing blog post.
It’s almost the end of April- which for years typically meant it was Autism Awareness Month. And this year you may have noticed there is a sweeping shift to using ‘Acceptance’ in lieu of ‘Awareness.’ This is much in part to great work on the behalf of several autistic networks, including The Autistic Self-Advocacy Network (and so many more). This work includes education on changing our language (note identity-first discussion up top), moving away from puzzle pieces to a rainbow infinity symbol to represent autism (see article here for one discussion on why), and learning and unlearning what we know about autism.
We are marching forward into a world where I look forward to advocating that we accept and celebrate all types of brains, both neurotypical and neurodivergent alike. Happy Autism Acceptance Month!
In practical terms, autism acceptance just makes sense because I would be hard-pressed to talk with an individual who is not aware of autism. Statistics have increased to 1/54 children being diagnosed as autistic– and if I had to make a prediction, that number will continue to increase. Autism acceptance is clearly more relevant than awareness at this point. More accurate diagnostic processes as well as an evaluation process that starts to assess with a better understanding of the complexity of autism will likely continue to yield higher numbers. I will say, we as a society have a lot of work to do in being allies to and accepting and advocating for autistic individuals. This will be discussed more in a post tomorrow.
In the last year, in my role as a speech-language pathologist (SLP), I have referred several families to initiate/ move forward with the autism diagnostic process, because I observed several key characteristics that sometimes I call more subtle signs of autism. I also encouraged families to engage in the diagnostic process because I want each family to have access to the most comprehensive services for their child as soon as possible. These are just some of the ways I support autism acceptance.
Sometimes parents/caregivers have outdated and stigmatized viewpoints of what autism ‘looks like,’ and I am hoping this blog shares some of the differences that families might already be noticing to start discussions with a child’s pediatrician. Autism acceptance is critical so that all children can grow and thrive.
Families- a diagnosis can offer open doorways to services and supports that may have not appeared before. Your amazing child is amazing before, during, and after the diagnostic process- and that process and diagnosis can help shed light on how to support them to develop and grow skills that are important for them.
Autism is a neurodevelopmental diagnosis that includes differences in communication, social interactions, and play.
Part of the diagnosis often includes sensory differences. I strongly recommend all parents become aware of the differences that are associated with autism so they can talk to their child’s pediatrician about what they notice. I want to say upfront that differences in one or any/all of these areas do not always indicate an autism diagnosis (the diagnostic process for autism is complex and requires multiple pieces)- but it does support initiating dialogue with your child’s pediatrician. With regard to the characteristics I mention below, I have worked with children who have some of these characteristics, a lot of these characteristics, and very few of these characteristics.
Getting an early diagnosis can mean early access to all kinds of support for your child- intervention, and networks that can make a world of a difference for how your child is able to communicate and interact with their world. I encourage parents to talk early and often with their pediatrician about their questions and what they notice for differences. The MCHAT (a screener for autism that parents are asked to fill out at Well Child Visits around 2 years of age) sometimes catches some of these differences, but not always. Part of autism acceptance is embracing these differences as they are part of who your amazing child is, and the other part is supporting your child to grow their skills in various areas to maximize their independence.
One of the key differences that parents sometimes notice in the early years before a child is diagnosed is in how their child communicates, and how they engage in something called joint attention.
Joint attention is a triadic (3 part) engagement where a child is engaging in an activity with an adult, and they are easily able to direct an adult’s attention to a desired object, and also follow the adult’s attention to a directed object (think, pointing at things, and having a child follow that point, or using language such as ‘look!’). Parents might also notice that their child has less speech than other kids their age, or regresses in their speech (loses speech they had). The child might utilize echolalia (repeating what they hear) and may not have as many gestures (waving and pointing) as other kids their age. With that being said, autistic children have a variety of expressive language skills, ranging from preverbal/nonspeaking to highly verbal, so sometimes this area can be harder to decipher differences early in development.
For play and socialization, differences observed might be preferring to engage only in specific routines around play, such as lining up toys or organizing items in a certain way.
Disrupting or changing these play routines might be frustrating to an autistic child. Differences in or lack of symbolic play (not yet being able to use an object to represent something else, such as pretending a banana is a phone), which typically develops around 2 years of age, might also be noticed. Some children might also have trouble initiating independent play schemes that interact with another person where each person contributes towards the scheme in creating roles and actions. These differences might mean that a child focuses on motor-based play schemes (lining things up, organizing things into piles, stacking things, etc) or repetitive play schemes. In the very early years, interest in gesture-based games (E.g., peek a boo, itsy bitsy spider) might be low.
Sensory differences might include sensory preferences or dislikes that may show up in strong ways (read- extreme aversions or interest in certain textures or visual/auditory patterns).
Your child might also be someone who jumps or flaps their hands or consistently likes squeezes. They might also strongly dislike certain forms of input, like loud sounds or certain textures. Understanding these sensory differences is so important in understanding how your child interacts with the world.
To my fellow moms- I want you to know that if you’re reading this and have questions, or if you notice differences that I mentioned, you are not alone. Reach out to your child’s pediatrician. Mention differences you notice and initiate dialogue. An autism diagnosis comes with insight and tools, along with options for services to support your child.