April is Autism Acceptance Month

By a HIMS Parent

In honor of April as Autism Acceptance Month, I’d like to share a bit about myself and my family and what autism looks like for us, along with some perspective and resources.

First, about us: There are no neuro-typical people in my household. Three people are autistic, three people have ADHD, one is dyslexic, two have dyscalculia, two have pathological demand avoidance, and all four of us deal with depression and anxiety to different extents. While all four of us have invisible disabilities, three of us also have periodically recurring physical disabilities with low support needs.

When one hears the word Autistic, they likely think of Greta Thunberg, the young Swedish activist; Temple Grandin, who is best known for her humane work with livestock; or for those of you from my generation, maybe even Raymond Babbitt, Dustin Hoffman’s character from the 1988 movie Rain Man.

All three represent autism differently and yet, if those are your only examples, one might think that all autistic people are brash geniuses able to articulate what’s important to them and what they need. There’s a saying that “when you’ve met one person with autism, you’ve met one person with autism.” This refers to how differently autism may appear in different individuals. Today I want to tell you about autism in my home starting with a recent experience one of my kids and I worked through.

My older child spends about 80% of their time in the amygdala (fight or flight mode). Imagine for a moment, spending almost all day, every day, with the adrenaline rush of waking up knowing you are already late for an early meeting or experiencing a near-miss car accident. That’s my child’s baseline level. Well, they recently had to have an MRI, a challenging procedure for many people regardless of their neuro-identity. We opted for an evening timeslot since they already miss too much school and meds beforehand to help calm their body and brain for the procedure. As a side note, they can’t swallow pills so there was an entire process of attempting to get a liquid form, not available at our pharmacy and not identified as necessary by our insurance company that finally ended with me picking up a single pill and crushing it to take with some apple sauce. I’m hopeful that apple sauce won’t forever be tainted by this experience but it’s certainly a no-go right now as the sensory/taste impact of the meds far outweighed the taste of the apple sauce.

Leading up to the appointment, we watched videos of kids preparing for MRIs, listening to the sounds MRI machines make, talking about what we knew and didn’t know about the process, the facility, the people we would work with, and more. There were several meltdowns, and my child was already so exhausted from their anxiety and the unknown that they weren’t even able to make it to school that day. So much for purposefully scheduling it for the evening! Once we were checked in and ready, we almost had to call it off completely because of the way the hospital gown felt on their skin while they were already overloaded. Somehow, we made it through but when we got home that evening, we were both completely drained. My child took about 2-3 days to get back to their regular level of self-regulation however I had to keep parenting straight through.

The things we did to prepare for the MRI are things we also have to do for any new experience including starting a new school year, going on vacation, trying a new restaurant, or attempting to go to ComiCon because ALL their friends are talking about how much fun it is. We actually did make it to ComiCon this year – made it through less than three hours and had to call it quits because it was too much for both kids. However, it was still a win for us because we tried.

Both of my kids are AuDHD (autistic with ADHD). Both are labeled as 2E (twice exceptional which refers to intellectually gifted children with one or more learning disabilities). Both kids have IEPs and both kids are incredibly different. Neither of their IEPs acknowledge autism outside of the medical history section. That means, all their support and accommodations are tied to their ADHD diagnoses. I won’t even get into the history and issues around that today, but I will share they are significant and still an advocacy adventure in progress. At first, I didn’t mind that the IEP language only focused on their ADHD, I was just so thrilled to have finally jumped through enough hoops to get their IEPs established that I thought the hard part was behind us. The more I learn, the more I realize getting an IEP was just the first step in a long and endlessly exhausting process for my whole family and we continue to learn more in each IEP meeting or interaction that we then apply to the next.

As 2E kiddos, I first assumed that having IEPs would help ensure my kids were actually receiving an education and support that would help them succeed to their full abilities. Instead, both continuously struggle to meet the basic grade-level expectations. In elementary school there was a vast difference between their day-to-day academic performance (not great) and their standardized testing scores (incredibly high). The older they get and the more the standardized testing is focused on new concepts for them, the closer the two measurements get. Not because they are challenged to their full potential but because the public school system hasn’t been significantly updated since the industrial revolution. This is one of the many reasons why gifted and 2E families who can afford to do so often choose private school.

My older child has already read Homer’s Odyssey and then The Iliad just for fun. They are obsessed with Greek mythology and could probably teach a college level course on the topic, loves creating art in many modalities, and is ferociously protective of their younger sibling. They are brutally honest. Always. They have a small core group of friends who love them and who they love dearly, and those relationships are what gets my child through the toughest times.

My younger child is a free spirit who craves supervised independence. They have their own hyper-fixations which currently include Pokémon and cats. Although they can read at a college level, they finally finished reading a chapter book for the first time last year. They are a sensitive soul with a tough shell and a deep desire to be accepted by others.

Then there’s me. I’m also autistic although I’ve been (fairly successfully) masking my whole life. First, because that’s what was expected of me and then because I didn’t know how else to be. I’m learning so much from my kids about being my true, authentic self though. I’ve had a professional career for more than 20 years in a corporate environment, serving others. I do not disclose that I am autistic in the work environment. Even in my particular profession with fairly progressive organizations, there is still way too much stigma for me to comfortably do so.

All three of us can pass as neuro-typical or “normal” most of the time. We may just seem a bit quirky or standoffish or extra quiet as the chaos runs wild inside our heads. Sometimes that’s okay and sometimes it really sucks. My personal goal is that I no longer feel the need to justify to others that my children’s behavior is because of autism. That’s not because I want them to be good kids who learn how to mask as well as I do but because I want them to be unapologetically themselves in all their glory. I don’t want them to conform to the social standards of saying what people want to hear or learning to mimic facial expressions. I want society to conform to understanding that when we all get to be in community in a way that allows us to feel more comfortable, we all get a better experience.

Autism Spectrum Disorder (ASD) is a neuro-cognitive/developmental disorder. The definition, diagnostic criteria, and support for autism continue to evolve. Autism is diagnosed at a higher rate than it used to be because the criteria have expanded in part to better represent a more diverse population. Autism is not, under any circumstances, ever caused by vaccines.

While I’m on the topic of Autism advocacy, here are a few more things to note.

1. Autism Speaks is a highly controversial organization in the autistic community. They were created by caregivers and family members of autistic people and typically do not have any autistic individuals in their leadership or board positions. Autistic Self Advocacy Network (ASAN) is a much better organization in representing autistic people and their needs focusing on “nothing about us, without us.” 
2. I do not have autism. I am autistic. My brain processes information differently than a neuro-typical person. It is not an illness or something to fix. Current therapies tend to focus on how to help autistic individuals navigate the world around us. Even this can be seen as controversial at times because it can often come across as masking – a term used to explain the process of “fitting in” rather than being allowed to be one’s authentic self.
3. A lot of autistic traits may be considered rude because they don’t meet social standards. Instead of reinforcing these expectations, here are some simple examples anyone can apply to be more inclusive.
   • Making eye contact and listening are not related. Eye contact can be a very difficult thing to do not just for autistic people but for many cultures as well. Instead of requiring eye contact, confirm listening in other ways like checking for understanding or repeat backs.
   • When asking a question, be okay with a straightforward answer. Don’t expect someone to sugar coat their response or figure out how to word it differently to make it more comfortable for you. Accept the gift of clear honesty. For example: I don’t like this gift. I think this assignment is stupid. Yes, those pants make you look fat.
   • Small talk can also be very difficult. I often (not so jokingly) will tell people I’m socially awkward. If you are attempting to chit-chat with someone who is autistic, this conversation may look different than what you would typically expect. Some examples are little to no response from the autistic person or on the other end of that scenario, a long response with little to no reciprocal engagement to get your perspective or thoughts. Small talk is a learned communication skill that can be difficult for some people and its typically not a reflection on how that person feels about you. Letting the conversation flow in whatever form its taking place is still more inclusive than not connecting with the person at all…unless they’ve expressed a need for space, solitude, or quiet.

My family’s experiences may only represent my family. However other families may relate to some or all of this. From what my kids have shared, there are many Hamilton families navigating the autism journey. If you are one of those families, you are not alone. For everyone else, I encourage you to celebrate autism acceptance month by taking a look at the following resources and things you can do.

1. Get (or stay) curious. Check out the resources listed below or go to your favorite social media platform(s) and search for autistic perspective. Look for those from a first-person perspective rather than those just about the topic.
2. Continue to think about the neuro-divergent experience when planning or going to school or community events. Look for those who may benefit from being included more but don’t force it. Instead lower the bar for involvement as much as possible. This helps all students and families, not just those who are autistic.
3. Look for ways to advocate for ALL students when the opportunity arises – locally, at the district level, state and federal.

Additional Resources:

For videos, shorts and a variety of autism related content here are some people I follow on social media. Disclaimer – this is not an endorsement for any of them, just sources of information and perspectives that I personally appreciate.

1. Facebook: Morgan Foley, Kojo Sarfo, Adam James
2. Instagram: Kaelynnvp, speechdude, neurodivergent_lou, lifeinanautismworld

Below are some websites that provide information about autism, especially from the autistic perspective.

1. Autistic Self Advocacy Network (ASAN) – A nonprofit organization run by and for autistic people, providing resources, policy advocacy, and first-person perspectives on autism.
2. NeuroClastic – A collective of autistic writers sharing personal experiences, research, and insights about autism from a neurodiversity-affirming perspective.
3. Thinking Person’s Guide to Autism (TPGA) – A resource hub featuring autistic voices, parents, and professionals advocating for evidence-based, respectful autism information.
4. Embrace Autism – Created by autistic researchers and advocates, this site offers deep dives into autism traits, self-discovery, and diagnostic insights.
5. Autism Level UP! – A neurodiversity-friendly site offering tools, strategies, and perspectives designed to support autistic individuals and those who want to learn more.