Whenever we are presented with a new concept, we shift from unawareness to conscious unawareness to awareness. It is human nature to learn and make connections from the moment we are born, and when Autism entered our consciousness, this was no exception.
When autism entered our collective awareness, a lot was unknown. The scientific and medical community quickly sought to learn as much as possible, and they wanted a greater understanding in hopes of finding a “solution” or a “cure” for Autism. Autism was approached in much the same way as Flu, Measles, Cancer, ALS, Dementia, polio, etc., via research.
Research and development can be expensive, and a few well-intentioned organizations were first on the scene to raise money to aid in these efforts to find a “cure” for this new unknown.
As a youth, we learned about the seven steps of the scientific process: observation➡️question ➡️ hypothesize ➡️ predict / test ➡️ analyze results / draw conclusions ➡️ communicate results.
Over the years, many theories have surfaced, some helpful and some not-so-much (vaccine theory). These theories continued to go through rigorous scrutiny in hopes of better understanding. Eventually, the prevailing wisdom is that autism cannot be cured but is a disorder in neurodevelopmental processes. I like to think of disorders this way: disruption in the “typical” order of things. IE: Autism is a neurodevelopmental disorder (disorder in brain development and processing). Since our brains have the capacity for unfathomable amounts of control over emotions, memory, senses, thought, breathing, temperature, hunger, and every process that regulates our bodies, you can see how VAST the presentation of Autism can be from person to person. Hence, “if you met one person with autism, you’ve met one person with autism.” This spectrum is large, complex, and overlapping. It can exist in solitude or alongside other “conditions” (didn't love that word). All is still unknown about Autism; we are still learning, studying, testing, and developing theories. But the scientific and medical communities have come a long way. Not a big fan that it is referenced as a disorder, because that has a negative connotation in my opinion, BUT ‘ordered differently than’ may be too wordy for the textbooks 🤷🏻♀️
While our understanding of autism has increased, there also exists old, untested, outdated misunderstandings and disinformation about autism. Some folks hold on to previously held beliefs and have not evolved with the scientific community's findings. For example, some still think vaccines or silver fillings “cause” autism. These theories have been disproven time and again. But, as an ND woman who hates grey areas, I get it; I do. We want answers and reasons because that is way more tangible. It's a place to work from and move forward. However, I’ve learned and accepted that I need to be more flexible in my thinking. I now actively seek answers and solutions. I like to challenge my previously held beliefs on many things. I’m willing to flex; I embrace critical thinking. But I digress.
Over time, efforts in research and development shift as more is known. The funding to support this learning is often through generous donor contributions. Therefore, it only makes sense that a charitable foundation will flex their focus
and evolve right along with it as well.
Therapies for autism moved from treatment to “cure” its presentations to more of a way to support those with Autism to live the whole, most meaningful life possible within a “typical” world. Assistance in navigating the day-to-day while honoring their authentic self. To be clear, I am not saying the hard work is over. While we have a greater comprehension, increased awareness, improved quality of life, and more robust disability legislation, there still is a long way to go.
By now, however, most people have heard of Autism - their degree of understanding dramatically varies depending on their place in the awareness process. So now what? Our next logical progression is to move into acceptance.
To me, acceptance is not only acceptance by others (which is super important), but I also see a need for greater acceptance within our own ND community. I've witnessed people within the autism community harshly judge therapies and those who utilize them; for example, this is the case with ABA.
Applied Behavioral Analysis has been highly scrutinized over the years. Rightfully so, for some, this therapy had been traumatic. Early in our information-seeking, Autism was speculated to be something curable, and ABA was initially utilized to treat or fix its manifestations. Consumers of this early ABA therapy share a sense of feeling they were terrible for doing/having certain behaviors and were punished for doing them. For example, a child may have been penalized for vocal stimming profanities in their general education class. Now, we know that stimming may be helpful and therapeutic for some. Current ABA modalities may include redirecting to other types of words, helping to delay yet not eliminate the stimming, or helping them find another way to stim.
As our understanding of Autism has evolved, so have its therapies, as is the case for ABA. It has stood the scientific tests for its usefulness in helping Autistics thrive in this world designed for those who are not. The ABA of today is precedent/antecedent based and individually designed for learning and skill practice. The therapies are based on the client's personal goals and utilize a lot of positive and no negative reinforcement. My son hates how he feels after a meltdown. Together we came up with plans to help identify and manage triggers. To aid in reducing these emotionally exhausting moments. As an alternative to eloping from stressful situations, an ABA therapist may work with the student, school, and/or parents to identify and work through these stressful situations more safely. There are infinite therapies for endless possible needs.
ABA therapy has evolved to more ethical and practical standards alongside our journey of understanding Autism. Look, I hate the idea of punishment; I think it’s ineffective and very damaging to a person. My heart aches for those negatively impacted by this older ABA modality. But I do know that it also has been beneficial for many people, especially as of late. Please be aware of how the negative bashing of this therapy can inherently be damaging and ostracizing. Acceptance.
Throughout this piece, I’ve used different ways to identify an autistic person. Over the years, I’ve learned how one identifies with autism is very personal. Some prefer to be considered “a person with autism” or an “Autistic person.” A person first vs. identity first. Both ways are correct! Some choose to be defined by their autism, and others don’t want to be defined by it. There are strong opinions on why their choice is the right way, but just as we honor pronouns, or MS vs. Mrs, skinny vs. thin, old vs. mature, or senior, we should honor how one chooses to be identified. If I was speaking of my son and was asked to describe him, I would say he is a funny, intelligent middle schooler who has Autism. He likes this. He has told me he does not want to be referred to as “being on the autism spectrum” or “autistic,” So I honor that. By the way, he loves and embraces that he has autism! He says it adds to his uniqueness and creativity. The only exception is that he dislikes and WANTS to learn how to prevent meltdowns before they start. That part of HIS autism is anxiety-ridden for him. As for me, I tell people frequently that “I have ADHD.” I’m not ADHD; I’m a person with it. My opinion. Again, Acceptance. You do you, boo. If we ever meet, I’ll try to learn and accept your individual preferences and do my best to honor them.
Many symbols are associated with Autism awareness efforts: butterflies, lightbulbs, the color blue, puzzle pieces, infinity symbols (gold and rainbow), and ribbons. Autism symbols are a very personal preference, and some boycott them altogether. Some folks with autism dislike the puzzle piece; they say it associates autism as being a puzzle or a mystery to be solved or put back together. Others feel it represents honoring individuality and is essential to the greater whole. Some prefer the rainbow infinity symbol over the rainbow ribbon. For some, the colored ribbon represents the spectrum of Autism and diversity within. Proponents say the infinity symbol represents “diversity with infinite variations and infinite possibilities” and is the better choice because ribbons are associated with finding a cure. Still, others say the ribbon is a symbol of awareness. Regardless of your preference, ALL of these symbols are doing something positive! Raising awareness and educating!! That’s a great thing!! Acceptance.
As mentioned earlier, I embrace critical thinking. Many opinions in the universe and on social media are based on outdated, dis or misinformation, bias, rumors, rigidity, personal experience, money, and more.
An excellent example of this is the rhetoric around Autism Speaks. The dislike for that organization is palpable. Yowzers! They were one of the first organizations to raise funds for research and development around autism. However, they flexed and changed alongside the scientific community as new theories developed. They are associated with the “finding a cure” Vaccine Theory, ABA. They are accused of not employing folks with autism in their organization or decision-making process and keeping too much of the donations. This is an excellent opportunity for critical thinking. Read about who they are NOW. What financial interest / personal gain do those who share this rhetoric have in spreading this information? Are they competing for dollars? Make it a habit to Look at credible sources for info on ANY organization. Did you hear something negative? Research to learn if this is factual or not. Read the ABOUT sections on websites. Go to the BBB or government resources to get accurate information. Regarding Autism Speaks - I encourage you to visit their q&a section and read it in its entirety.
https://www.autismspeaks.org/autism-speaks-questions-answers-facts . I am not advocating for or against any specific organization. Boo, do you.
As an ND community, we cannot expect awareness, understanding, and acceptance from others without embracing and honoring the differences between ourselves and each other. The evolution from unawareness to awareness of Autism has been incredible! While fraught with misunderstandings, trial, and error, it has evolved nonetheless. It’s part of our history and our story. We cannot grow as a people without making errors along the way. When we don’t evolve, shift our thinking, and learn from our mistakes, the most significant problems live.
This month and every month, keep honoring your story but appreciate the differences in others. Your experiences are your own. Spread awareness and acceptance by example. Use whatever symbols, if any, in these efforts. Encourage others to donate to ongoing research and development. Seek whatever therapies you feel are right for you. Lastly, honor the choices of others in their Autism journey. Embrace your own decisions in life, and advocate for yourself. Learn from your own trial and error. Accept who you are, challenge and grow to recognize the differences in others but remember we are better together. Accept.
You will see me using all symbols as they all make me smile. They are founded on creating a loving, accepting, and supportive world for my son. I'll continue to be open to new ideas and flex as needed to help assist my son in his journey. I'll continue to think critically and appreciate the fact that I can. Finally, I vow to understand, respect, and accept the journey of others.
Note: I sat down at 7:30 am to jot my thoughts down about upcoming Autism Awareness Month, possibly include it on a local FB page I manage, and after 9 hours of perseveration and hyper-focused ADHD later, I ended up writing an overdue blog post. I know I had many other things I should have been doing, but as it was, my ADHD presentations were full-throttle that day.
I welcome your thoughts, but as my child reads and contributes to this blog, any unhelpful comments may be removed. I honor and accept your right to an opinion; I may not allow it to take space in this place. We are all on a journey; let’s be supportive; we are better together than we are alone.
I stumbled on this infographic by Autism LevelUp. It’s pretty helpful!
You can read more here: https://www.autismlevelup.com/#home
As an ND person and mom of an autistic son I would reiterate that preferences are just that, a preference. Personal preferences can very from person to person. IE; Identity first vs person first or a blue puzzle piece vs a multicolored infinity symbol . Acceptance.