Dear Non-Autistic Friends and Family

Dear Non-Autistic Friends and Family

We know you try to relate to us, your autistic loved ones. We appreciate it; we truly do. But in many ways, many of us are finding that you think you can relate, but in fact, can not. I will try to help you better relate, in writing, because I can express myself with more clarity in writing than verbally.

Social interactions are downright draining. We can have had eight or more hours of sleep and be exhausted by just a half hour of social interaction. Not just mentally exhausted- physically- as if we just ran a marathon. The social interaction can be pleasant and with people we are fond of- it doesn’t matter. It’s draining nonetheless.
When we need to excuse ourselves to be alone or to even leave, please understand that all is well. We have just exerted all of the energy available at the time, and it’s time for a break.

Noise can be exceptionally bothersome. Many of us love music, but I personally cannot handle music that is too loud. While we love music, the sounds of many different voices in a crowded place, a sudden loud noise, persistent bothersome noises, or a regular voice being heard for too long are all possible triggers for meltdowns/shutdowns. I personally shut down in places I don’t feel at liberty to scream or cry by trying to zone out, pretending I am not there and what I am hearing is not happening. If we are together in a loud environment and my eyes are glazed over like I’m in a trance, you can be sure that I’m disconnecting myself from the reality that is just too much to bear at that moment. We may wear ear protection but do keep in mind that those protections are not always enough.

We tend to be very literal. Our body language and facial expressions may or may not match the words we are saying, but trust us- we mean what we say. Do not try to read more into it. Also, it is very confusing to us when you do not do the same. Please do not expect us to pick up on subtle cues. We may or may not pick up on those cues; however, we are going to listen to and believe (or at least believe that you believe) the words you tell us. We are not lacking a sense of humor and we are not gullible (both of which I’ve been accused by either correcting someone or believing something that was untrue). Just as it is difficult for you to relate to the way our brains work, it is difficult for us to relate to the way your brains work. We can all work on that! (Sense of humor there 😉

Undoubtedly, you have had times that you were not in a social mood, times that noises bothered you or gave you headaches, and times that you were both misunderstood and misunderstood someone else. We know that you have, but trust us, you can not truly relate. There is a difference between having times like these, and living from one moment to the next, only ever knowing times like these. We thank you for wanting to relate and understand. The best we can ask and hope for is, please be patient with us. We promise to be patient as well.

photo of a boy near leaves
Photo by Min An on Pexels.com

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FEMALES AND NON-TEXTBOOK AUTISM

The best support mental health professionals and educators can offer autistics (and yes, most of us prefer this term as autism affects so much of our identity) is to admit they don’t know everything about autism and how it affects autistics. Before we move on, every word is written with all due respect. Professionals are very important to us, and as such we need their understanding on a deeper level than is currently occurring.

For every four boys diagnosed with autism, one girl is diagnosed. This is what I remember learning about autism when pursuing an elementary education degree. We were taught that autism is much more prevalent among the male population than among the female population. We also learned that the term person with autism should be used in place of autistic person- that we should remove the disability from the person; that the disability does not define the human. But here’s the problem with that- it so very much does define us.

We also learned that autistics do not like to be touched, need routine, and will have a special interest that they are extremely passionate about. This concludes my education about autism (granted I was not pursuing a special education degree- I certainly hope more than this is taught to teachers of special education).

Let’s have some real talk now. While (most) everything I just listed are true of many autistics, that is textbook information. Textbook information and a living, breathing human being are two very different things.

I’ve lived with Aspergers, or now classified as ASD (Aspergers is a form of autism) for thirty six years, my entire life, without knowing anything about it, other than knowing I was very different from my peers.

It wasn’t until my third year of working as a paraprofessional, and working in an inclusion class with two students diagnosed with autism, that I recognized the condition in myself. The textbook couldn’t allow me to see what those sweet children did. My professors (really great teachers by the way) couldn’t allow me to understand the way those sweet children did. I couldn’t see myself in the spoken or written words about autism. But after knowing these precious students about half a year, I was amazed at what had been missed my entire life. They were smart, sweet, quiet and quirky. They were exactly what I was as a child. They were not what I pictured when learning about autism. And while it is true one of the students was not a big hugger (but would still hug and smile if asked, and held my hand walking down the hallway every single school day- would put his hand in mine and start walking if I wasn’t ready in his time ;), the other student absolutely loved to be hugged and would walk up as his way of asking for a hug. I would give him a hug and he would smile big and sit back down. 

One students’ mother always told us that he spoke all the time at home. We had a hard time believing her until she showed us a video one day. Not only did he speak, he spoke well, and read (I teach Pre-K)!The main population believes that autistics must not be smart or must not be able to talk- and that’s simply untrue. Professionals believe that autistics must be unconventionally brilliant, which is often true- but not always, and also often not true. We will have major strengths and major weaknesses, but overall smarts is no indicator of autism or lack thereof.

We put autism in a box, seal it and take a big fat sharpie, labeling the box DO NOT OPEN, DO NOT MOVE, EVER, FOR ANY REASON. But why do we insist on this box? Instead of running away from something we don’t understand, can’t we make more effort to learn more, to understand more, or at the very least admit that we just don’t know everything about it? I will be the first to admit that once I completed my course of study including autism, I considered myself not an expert, but to know a lot about autism. After meeting those sweet students and doing extensive research (that is still ongoing after almost a year’s time), there is so much more that I know now than what I thought I knew, and still so much more that I don’t know about it. And I’m autistic! There are quirks about me that I just didn’t realize were symptoms of autism. There are strengths and weaknesses I possess that I didn’t realize were autism related. 

One thing I have learned is that more boys are diagnosed, not because more boys are autistic, but because boys are more textbook typically autistic than girls are. Surprise- we are different as girls on the spectrum than boys on the spectrum are.

Research is only just starting to catch up to this fact, and doctors and educators have yet to understand that. While communication is still awkward for us, we can manage this area of our lives easier than boys do. While boys will have very different special interests than their male peers, females may have special interests seemingly normal for girls their age. The difference between girls on the spectrum and girls not on the spectrum, is the level of passion, or even obsession with that special interest as opposed to their female peers. At one time my special interest was a specific Nintendo game (Super Mario). I would go to my neighbor’s house, who also loved Nintendo, and we would play for awhile. She and her younger sister would be finished playing and want to move onto something else, or a different Nintendo game. I would beg to continue playing. For hours. All day if I could. I would even spend the night to play until I went to sleep. Another special interest was singing. What little girl doesn’t at some time dream of growing up to be a singer, right? Well, how many little girls sing from the time they wake up until the time they go to sleep, even with a hoarse throat because of the singing? My poor mother made an invisible mute button she would verbally announce pressing. That was my cue to give her some quiet for awhile. Of course, she had to explain that cue to me before I understood. I tried my best to respect her need for quiet, but would begin singing again within minutes, forgetting about her using the mute button. I would always revert back to singing, giving in to the constant and overwhelming urge to sing. Many girls will have music, writing, drawing, painting, needlework, or even makeup and fashion as a special interest. 

While routine is very important to me, I have learned to not be quick to assume all autistics feel the same. I have thrown my proverbial box away and replaced it with an open mind, understanding that we as autistics are individuals exactly as non-autistic people are individuals, with individual preferences. When unsure where someone you know personally stands on this issue, or any other issue for that matter, the only way to know for sure is to ask that person him/herself!

So to sum up, we have only talked about physical contact, the prevalence among boys as opposed to girls, special interests, and routine. Textbooks don’t get the information wrong, they just don’t give complete information. They skim a very quick surface, leaving autism a mystery (even among autistics). There is so much more to discover about autism than what even professionals are taught. How valuable is the textbook information if even people with the condition can not recognize themselves within the text? Let’s conclude by remembering a favorite saying I’ve heard several times- if you have met one person with autism, you have met one person with autism.