So You Love Someone with Autism

Aug 30

Hello, and welcome to my blog!

If this is your first time here, I am so glad you found me. I am a school psychologist who currently works in private practice. While this is a newer role for me, I have been a school psychologist for 11 years. I have worked with kids for as long as I can remember. I am a mother to three amazing kids, too. If you want to know anything else about me, reach out or read through my website, but that summarizes it!

This is the second entry in a series I have decided to title So You Love Someone With… Each entry will feature a specific neurodivergence/diagnosis. My goal for the blog is to debunk myths, shed light on the topics, and to empower people. The person you love may be yourself, which is great! This week we are diving into autism spectrum disorder, or ASD. Sit back and read on!

There are so many ways I could approach talking about this topic. I honestly feel as though I could write pages upon pages about the autism spectrum. However, I am going to start with my story as to how I started understanding this type of neurodivergence.

I do not remember hearing the words “autism” or “autistic” during my childhood. If you are someone with a similar level of wisdom, you likely had the same experience. However, I distinctly remember my early experiences with working with or getting to know people on the spectrum. Their differences in functioning were marked, making it clear for others to “see” the brain differences without seeing the brain. I was in undergrad when I started to learn about this brain style, and I remember being fascinated right away. I knew I wanted to work with people, especially children, with “special needs” from the time I was a teenager. I worked with kids and sought out opportunities to work with kids with “disabilities” in particular. I enjoyed working at daycares, preschools, and summer camps, especially when classes were out for the summer, and I needed something to do during the day before working at night. There was a little girl in one of the daycares where I worked who was diagnosed with ASD. She was so young, and I distinctly remember being under the impression that an autism diagnosis had to be made early on, I want to say by age three. She did not respond to pain. She did not communicate with others. She had big, beautiful brown eyes, and curly brown hair. Those beautiful eyes stared into mine every day. I remember thinking, I see you in there, and I wish I could hear you. I worked to make sure I did hear her in ways that she could communicate. From there, I began to understand what exactly was meant by a spectrum. However, back then, there were differentiations that essentially excluded some people from receiving the label. In walks our friends with “Aspergers” and “PDD-NOS.” I remember even as a 20-year-old thinking that this was so strange, particularly the PDD-NOS. When the DSM-5 came out in 2013, our worlds were rocked because people decided You know what, it is a spectrum, so come one, come all, let’s have this label all together so we know what this is. Except so often, what we think “it” is can be mind-boggling. This is where I again fall back on the notion that while this is a label, it represents a beautiful spectrum. The people I knew that were “not quite autistic,” but who did not quite fit the mold were then allowed to identify with this growing group of people who were more readily identifiable. Fast forward to 11 years later, when the DSM-5 has been revised and WOW, our world has been rocked and shaken and spun and everything else as we strive to understand this brain style.

Okay, my journey had many more details, aha moments, and countless hours spent getting to know and getting to SEE people on the spectrum. Getting to hug their moms, hand them tissues, high-five them, play games with them, hear their passions and understand their struggles. Yes, there are struggles. Inherently, unfortunately, the medical model still frames things so negatively. If you don’t fit the mold, you are disabled because you cannot function in the society, we have created with the norms we have placed on everyone. We have seen great progress, but great work we have left to do. (Hey, lots of my people on the spectrum taught me lots about Star Wars, okay?) When talking with people who we think may be on the spectrum, they express frustration over these differences. It does not usually feel good to them to not understand social cues, or to feel like some sensations everyone else enjoys literally feel painful.

So, where are we now and what do we do?

Close your eyes and imagine a preschool playground. Three classrooms are out playing on the slides, the swings, and the open field. Chances are, one of those kids is on the autism spectrum.

Close your eyes again but open them to read this first. Imagine a college classroom. It is an undergrad class, so the room is bursting with energy, ambition, and students. There are probably at least three people in that room who are on the autism spectrum.

What you might imagine to be the profile of a person who is on the spectrum is likely a stereotyped, default representation of a beautifully diverse group of people. While “autism awareness” is wonderful, let us embrace, accept, and affirm our folks on the spectrum!

Have empathy. Not sympathy. In a moving display of self-advocacy, the ASD community has embraced identity-first language. So, wave that autistic flag with your person or your people and do not be afraid of the weird!  Be an ally to your autistic loved one. There are different “levels” to the spectrum diagnose, differentiating the level of support needed based on well, level of need. I say we diagnose them all with a Level 3 of NEED FOR AFFIRMATION!

And remember, kids, IF YOU HAVE MET ONE PERSON WITH AUTISM, YOU HAVE MET ONE PERSON WITH AUTISM. (Dr. Shore)

I could write about this all day.

If you love someone with autism, just love them. Get them. See them.

Leave a comment with questions or insights!

Talk soon.

Sarah

What are some signs to look for in yourself or others?

· Being awesome, of course (pat on the back now, please, or fist bump to your loved one)

· Sensory sensitivities: this looks like literally being very sensitive to input gathered through the senses. Something smells so bad I cannot ignore it; it makes me sick. Something is so loud or so intense that it hurts my ears, and I cannot think, let alone learn or stay calm. This tag on my skin is causing me pain. When I am in pain, I am not at my best, so please, give me a second. I need help in these moments.

· Social differences: making friends might be tough. Here are some things that may look like. People say things that sound serious but then laugh. I do not see what is funny and I would really like to understand. When I start talking about what I am into, I cannot stop. I might not notice other people becoming bored or annoyed. If I do notice and pick up on facial expressions or body language, I may become aggravated because I really need to talk about this. Please let me get it all out before moving on. I might try to compensate for not knowing who a true friend is by buying my friends things or by following them around, getting too close, or again, talking with them too much. I may not be socially motivated to initiate conversations. My brain is not always curious about what other people think or feel, so I forget it is nice and important to care about others. Without this motivation, I really do not feel compelled to learn about these social skills you tell me about.

· Repetitive behaviors: these can vary as well, but most people automatically imagine someone flapping their hands or rocking their body. It could look like repeating the same lines from the same movie again and again. It could look like making the same sounds. It could look like lining up my toys or my things just right the same way every time. Please do not mess with my system! Speaking of, I thrive on routine and being what you may see as rigid actually feels great to me. I feel safe and secure when I can predict what is happening. Please do not throw me a curve ball. I need time, and grace, please. My emotions can be big, but I might not always know how to settle. This is when rubbing my hair, pacing, standing, spinning, or flapping helps. I might do this when I am very excited too!

· Communication: again, there is great variance, where some people may not use verbal words to communicate, and others may have an advanced vocabulary. Wherever a person falls here likely causes some social differences and therefore difficulties. I might talk like the TV shows or movies I watch. I might be making those noses or repeating those phrases. I might constantly change the conversation back to what I want to talk about because for goodness’ sake, I do not care about your art project. This might look like a monotone voice, with limited expression. Speaking of expression, you may not be able to tell what I am feeling based on my body language or tone when I talk. Speaking of feelings, I may not be able to identify many or relate to the ones you feel. It is pretty likely I know what makes me see red though!

Resources

Websites

https://autismnow.org/at-home/

autisticadvocacy.org

autismacceptance.com

https://www.autismlevelup.com/

https://summitcenter.us/resources/links/

https://tiltparenting.com/recommended-resources/

Community Resource

https://florida-card.org/

Social Media Accounts

Autism_sketches