If you are reading this blog, it means you already care about the autistic community, and we are so thankful for the many people who have shown support to us and our family. Over the course of our journey, we have come to realize that even when people mean well, certain things are not appreciated by or found helpful for autistic individuals and their families. Because of our learning, I think it is important to share correct information about autism and dispel the harmful myths that still circulate.
April has traditionally been known as “Autism Awareness Month” or “Light It Up Blue” month. Our learning about autism has evolved, and thanks to finding information from the autistic community, we now can do better in supporting our autistic child.
You will not see us wearing blue or sporting puzzle pieces, as our son is not a single color or a puzzle to be solved. Instead, we will continue to embrace AZ, how he experiences the world, and celebrate the differences that exist within our family. Please help me by educating yourself, spreading correct information, and celebrating neurodiversity this April!
Myth 1: Parents are to “Blame”
The history of autism is embedded in extensive misinformation and ableist views. Leo Kanner began writing and studying autism in 1943 with a small sample size of white affluent boys. Around the same time, another famous and controversial historical figure with autism, Hans Asperger, began researching children with disabilities. In the early years of autism research, the term “refrigerator mom” was given to mothers who were blamed for being too “cold” and “distant.” This type of parent was believed to create children who could not form relationships. It took a father of an autistic son, Bernard Rimland, to realize there had to be another explanation. He began to research the biological basis for autism that has now been well documented, researched, and validated.
Fact: Autism Stems from Neuro-differences
Meghan Ashburn, co-author of I will Die on This Hill, states autism “is a neurodevelopmental diagnosis, which means it stems from within a person’s nervous system (Ashburn & Edwards, 2024, page 118).” Autism is not a behavioral disorder. It affects how people interact with others, communicate, learn, and behave. It is part of their whole being. Ashburn also perfectly shares, “Our children think autistically, feel autistically, live autistically.” Lastly, as we can attest, autism most certainly does not stem from parents that are "cold" or "distant."
Myth 2: Autism Speaks is a Helpful Organization
Autism Speaks is an organization founded in 2005 by Bob and Suzanne Wright after their grandson was diagnosed. While Autism Speaks claims it sponsors research on autism and focuses on raising awareness and supporting families, only 27% of money raised goes towards research and 1% goes towards the “family service” grants (Info on Autism Speaks).
If you are listening to the autistic community, they are very vocal about the harmful effects Autism Speaks has done for their movement of inclusivity and acceptance. Autism Speaks has put out numerous commercials and propaganda stating autism is something that needs to be cured, fixed, controlled, and feared. Using such rhetoric is particularly harmful to autistic individuals and casts a negative light on their unique abilities and personalities. This rhetoric also implies something is wrong with simply being autistic.
Fact: More Neuro-affirming Organizations:
Autism Society, Communication First, Autistic Women & Nonbinary Network (AWN), & Autistic Self Advocacy Network (ASAN).
Being autistic is experiencing the world in a different way, not something that needs to be cured, controlled, or fixed. We need all types of learners to continue society moving forward. Most importantly, one’s measure of worth should not be based on how they contribute to society, but rather someone deserves human rights because they are human.
Myth 3: Puzzle Piece Symbol Represents Autism
The puzzle piece gained traction due to Autism Speaks. The Blue Puzzle Piece became an iconic symbol to represent “autism.” The autistic community is very clear that they are not “puzzles” to be solved and/or fixed. They are all individuals, no different than someone without autism.
Fact: Rainbow Infinity Represents Neurodiversity
The autistic community is part of a larger movement (Disability Justice Movement) to support neurodiversity. Neurodiversity simply means we all process and experience the world differently with sensory input, learning styles, and intellectual abilities. There is no “correct” way someone’s brain and body should work. It is important to celebrate, embrace, and learn how we are all uniquely different.
Myth 4: Person Centered Language is Always Correct
The consensus is to use identity first language (e.g. autistic) vs. person first language (e.g. person with autism). The autistic community takes pride in being autistic and believes it is a central part of who they are as a person.
Fact: Individual Identity is Always Correct
We need to allow the autistic person to determine how they identify themselves by asking or taking their lead. When in doubt, however, I would use identity first language. We have seen this shift also in the Deaf community where they have advocated for how deafness creates one’s own culture and ways of being in the world (Wooldridge, 2003). They do not believe being deaf is something bad or to be feared. Again, saying someone is autistic is celebrating who they are as a person, instead of implying they are a person with a problem.
Myth 5: Autistics Are Not Capable of Forming Meaningful Relationships
A previous misunderstanding of autistics was the belief they were not interested in relationships because they did not engage with others in certain ways. Play, communication, and attachment patterns look differently for autistics, and because of this, there are misassumptions that the autistic person is not capable or desiring of meaningful relationships.
Fact: Autistics Have Loving, Meaningful Relationships
While I could go on for pages on how harmful and inaccurate the above myth is, I’ll encourage further reading and listening to gain additional information. The Uniquely Human book and podcast do a fantastic job dispelling this myth. The co-producer, Dave Finch, does a wonderful job sharing about his journey of diagnosis, navigating relationships, and helping others with neurodiversity differences in relationships. Additionally, in 2022, I provided a free training on attachment and autism and can be viewed here.
Myth 6: “Autism Mom” is a badge of honor
Full disclosure, I used to call myself an “autism mom.” I now understand why the “autism mom” saying is harmful to the autistic community. Perhaps this came from things such as “baseball mom” or “soccer mom,” and while it most likely originated from a place of parents trying to find support, it has taken the focus away from the autistic individuals themselves. Ashburn asserts “but if I was going to wear a shirt to celebrate him, putting his medical diagnosis with my picture seemed like an odd thing to do (Ashburn & Edwards, 2024, 61).”
Fact: Being a mom is a badge of honor.
After starting our journey with autism, I felt very lonely, confused, and scared. There was a community of moms that wanted to offer support and guidance that were further on this path, and I was ready to join their community. After reading and listening to the autistic community, I now realize how I am not autistic, so therefore cannot be an “autism mom.” I am a neurodivergent mom raising an autistic son (and one with ADHD).
Myth 7: High Functioning vs. Low Functioning Labels are Helpful
Labels do not really help identify the supports an autistic person will need. Instead, they come from the medical model with ableism embedded throughout. Typically, “high functioning” means the autistic person speaks with words, has a better ability to “conform” to society’s expectations, and have a lower sensory needs profile. The autistic community is urging us to get rid of these labels that cause divide, confusion, and fear for parents.
Fact: Labels Take Away from the Individual
Instead of using these labels, it is more effective to say “Johnny is autistic. He struggles with spoken words, loves to color, dislikes physical touch, struggles with sleep, and loves to swim.” This gives more information on how to support Johnny and capitalizes on his strengths. Another great example to describe autism is the following picture. Each person comes with different strengths and challenges.
Myth 8: ABA is the Only Approach
Possibly one of the most controversial topics in the autistic community is the use of ABA (Applied Behavioral Analysis) therapy. ABA was first developed in the 1960’s by O. Ivar Lovaas. It is typically the first, and sometimes only, intervention offered to families, despite more humane interventions being available. “ABA is based on the idea that behavior can be analyzed, learned, and changed through reinforcement” (Schiller, 2023). As a therapist who specializes in attachment trauma, treating my child as a set of behaviors never seemed to be the path we would take. I recommend doing research and listening to the autistic community before beginning this form of treatment. I also encourage one to listen to the dehumanizing words from the founder when he states: “You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense- they have hair, a nose, and a mouth- but they are not people in the psychological sense…” The autistic community is very vocal about their stance against ABA as a form of intervention.
I will add that ABA is evolving and there is attention to the harm it has caused in the past. There are autistic self-advocates that share the positives to ABA and how it helped them on their journey. If this is a route that is deemed best for your child, it is vital to make sure the provider is properly trained and follows protocol with fidelity. In the sources and further learning section, I do include an article that talks about the positives of ABA for those who wish to view both sides.
Fact: Alternative Therapies are Available.
For further information on alternate evidence-based treatment for autism that does not include a behavioral approach, I encourage one to look at AAC (Augmentative and Alternative Communication), Interoception discussed by Kelly Mahler, Filial Therapy, Theraplay, DIRFloortime ®, or Story Grammar Marker ®).
Myth 9: April is Autism Awareness Month
The autistic community has been trying to move April towards Autism Acceptance month vs. Autism Awareness month. Their belief is there is enough “awareness” of autism, it is now time to embrace and accept autistics.
Fact: Every day is Autism Acceptance Day
It is impossible to cover in depth all the myths that are harmful to the autistic community. My hope is that I have sparked your desire to continue doing your own research and learning. At the very least, I hope you do not “light it up blue” or sport the puzzle piece on your social media page to show “autism awareness.” Please join me in sharing correct information and finding acceptance with all the different learners we have in our world, not just in April, but all year long!
Sources and further learning:
1. I encourage anyone raising an autistic child, is autistic, or wants to be an ally to the autistic community to read I will Die on This Hill (2023) by Meghan Ashburn and Jules Edwards. This book does a fabulous job breaking down barriers regarding myths related to autism.
9. Story Grammar Marker (focused on communication on the narrative language level)
11. Book: Uniquely Human Barry Prizant, PhD
12. Book: Brain-Body Parenting: How to Stop Managing Behavior and Start Raising Joyful,
Resilient Kids Mona Delahooke, PhD