Jane Strauss is not an actress, a school board member, or the dead author of the Blue Book of Grammar and and Punctuation. She is an Autistic mother of five ( 4 with "autistic like behaviors in the 80s, and 1 with a current ASD label), partner of another autistic, digital photographer, attorney in remission, advocate, and writer. In her spare time she maintains a household and tries to pay the bills, while filling in entirely too much paperwork.
Only a little snide. You could add that she resides in Minneapolis, MN and does not stay there to enjoy its weather.
I'm autistic. I'm a parent of 5 kids, all spectrumish, from 15 to 30. All but one are successful, quirky, and on their own. I still feel like I am about 18 - going on 60.
I am told how high functioning I am. I am the linchpin holding our small family (mom, dad, and 15 year old, all formally inhabiting the spectrum) together, because my Autistic Superpowers are paperwork, tracking calendars, and photography. I am the Dreaded Aspie With A Mortgage. And I am like your kid.....in spite of my being the one to fill in the endless paper work for state services or read the pounds of IEP stuff.
I try to multitask. Some days I can accomplish as many as fifteen things. But the little things fall off the radar. Like combing hair. Like brushing teeth. Like remembering to eat meals. Like remembering the clothing is in the washer and needs to be put in the dryer . Like putting the dishes away before they are piled high enough in the drainer to fall out. Out of sight, out of mind. I get the budget juggled and the bills paid, and get projects for my fledgling photography business completed in a relatively timely manner, and get my family fed at least breakfast and dinner, most days.
Cleaning and organizing terrify me. And they are things that I constantly have to keep on top of, and push myself to do as a result. The visual clutter as I try to do this can bring on a meltdown, or , at the least, the shakes. I'm told that I am pretty good at developing systems to organize, but I always lose things at the most inopportune moment. Perhaps if you are a parent of a spectrum kid you have wondered about why their room is such a mess. It could be, because the clutter makes it difficult to focus so they get distracted in the middle of the cleaning. It could be, because many, many typical kids also keep their rooms in disarray. It could be, because, like me, they put off cleaning until the mere thought becomes overwhelming.
Big stores are not among my favorite places to be. However, in 37 years living in one place I have finally learned to navigate in them, at least if they are local, and familiar. When I first moved to Minnesota, in 1976, and had never before seen a Target store, I quickly learned to budget at least 3 hours for a trip there. Visual clutter, again, is the villain. I would think I knew where things were, and might be able to find them, if I had a printed list. The list would keep me on track, but as soon as something had been moved, or was out of stock, I was sunk. Lost, dismayed, distressed, panicked - Sometimes I spent half an hour in a corner or in the restroom, just shaking. And this was *before* I got the Autism label, when I had no understanding of why I was so confused.
Nowadays, things are much better. Through practice I can sometimes get out of the store in 30 minutes, or even 15. At 9 years old, I lost my hairbrush the first day of Girl Scout camp and when I got home my curly hair had to be cut off because the tangles are so fierce. Now I have a set place to keep the brush, so it does not get lost. 30 years ago, when my schedule changed for summer I'd lose 20 pounds because I did not feel hungry and forgot to eat. Now I schedule in at least two meals in a day and maintain a steady weight unless too many stressors pile up. I am like your child, but have had 50 years to figure out workarounds and learn how to shove my way through through stuff I fear, because nobody else will.
Great article, thank you! I sometimes see how those of us who parent kids on the spectrum might have some "Aspie" genetics even if we dont warrant an ASD label because in all honesty, minus the part about forgetting meals, I could have written your post just about word for word (instead of shaking in the bathroom in a big store I leave it in cold sweats and nearly hyperventillating). And I so appreciate your insight there on the visual clutter causing organizational stagnation. We got new book shelves recently and I could not bring myself to organize them, I just couldnt get my head around it, until finally I went into another room and drew a diagram and a list of the items and drew them in where they went... then I was able to go and organize the bookshelf, but not before, and it would litereally make me feel sick to my stomach when I tried without the diagram. We have a number of folks with an ASD diagnosis (and some who probably should) on both sides of our family, so I think you are right... that apple doesnt fall very far. :) Thank you again!
ReplyDeleteI am so glad that this made sense to another...and hope it can help people to understand...the functioning labels are just so..wrong.
DeleteThat was very well put Jane. People do what they have to do but that doesn't make it easy! Nobody can really ever see inside another person's head, so they shouldn't presume to know what's going on in it.
ReplyDeleteGood post. My son's diagnosis has helped me understand some of the traits in myself too.
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