The Autistic Disparity and Gratitude to My Mother and other Supports

Recently my friends Jenna and Jennifer published their second book called, "The Actually Autistic Guide to Building Independence." I’m looking forward to reading it. ( I also contributed a quote again so yay!) At forty, I still have issues with independence and dependence. Their email announcing the book was timely. An incident had just occurred so I wrote back with;

"Congrats Jennifer and Jenna!!! You did it again !!!! I will definitely be ordering a copy …you ladies deserve some cake! I hope you celebrate with something decadent and delicious ! Bravo!!!!!!!You know this was timely: I’m forty now but still often feel …. Well, ya know how it goes … maybe the word I struggle with most is incapable. Tomorrow my (also autistic) son gets his cast re done from a hand surgery an hour away and it’s supposed to rain. I’m a terrible driver and lack independence that way. He’s better at driving but could be in pain after - so I had to ask my mother to drive him (as my daughter and husband were unable to move their jobs tomorrow.) In all honesty it makes me feel so incompetent as a mom, but also relieved someone more capable than I, will be there to ask questions in a hospital setting (I’m terrible at hospitals) and drive safely if it does thundershower. But yet I stay at home a little useless … Anyway, moments like these take me to the fact that I STILL rely on my mother sometimes, even though I’m forty with a mostly grown family! So I’m eager to read your book to perhaps help my children be a little less dependent than I am (though it’s not so bad with a good support team to which I’m grateful for !:)Anyway, thank you for sharing your gifts with the world! All the love and best!" Kmarie

Currently I’m also quite sick in the mornings. (This has been my typical mode for most of my life with conditions I have spoken of before. My magic number seems to be after 10 or 11 am for abating of intense symptoms.) With H Pylori I’m currently sleeping even more and falling asleep in the afternoons too - and if this sleep schedule is disturbed I feel quite sick. Thus, getting up at 7am to drive to the hospital also was a concern of setting my health back at least a few days. The hospital out patient setting gets my ulcer churning no matter how much prayer and meditation I do (and yes I’ve massively improved and know God is still with me which I’m grateful for.) I’m supposed to avoid general upset while the ulcer heals which is actually not the easiest. I’m not a strong driver. My son wanted to go to a government building downtown where it’s sketchy and I’m out of my element and he has a major injury. So, I texted my mother at midnight asking her to go in my stead and she graciously accepted taking a huge load off my shoulders. Then I promptly emailed the gals the above note.

                                       

Jennifer wrote back;

"You are so dear! 

And guess what? I didn't even BEGIN to learn to drive until my late 30s. TOTALLY could NOT handle it. Please give yourself some grace, dear one!!!You are one of the most amazing writers I know, an incredible mom and partner, and your home decorating??? Off the charts. So **I** would call you HIGHLY capable. We Autistic folx have certain astounding strengths and then maybe some areas in NT skills sets that we don't excel at. FINE. I take YOU. Unique and magical YOU. (Also, WHO is good at hospitals? YIKES.) (Who doesn't depend on their mom? My mom and I had a complicated relationship growing up, but I depend on her hugely now--and she on me. Glad you have this mother!!!)

okay, lots of upper-case feelings here, because you are wonderful. I hope all goes well with son/mom/storm. Love, JEB"

When I received Jennifer’s email I felt a huge burden lift off my shoulders. I smiled and felt immense gratitude.That’s what encouragement and acceptance can do! Genuine expressions of love cover a multitude of shortcomings.

Autistic people have a larger gap of disparity in their giftings and areas that require support. It’s not typically obvious to outsiders (either the gifts or the struggles depending on how good the masking abilities are of said Autistic person.) The areas I beat myself over are mostly in the motor skill department ( driving/ cooking/ adjusting to new situations… I literally learned last month how to pay for parking by myself and was so proud, but I honestly don’t know if I could do it at a different building without support again.) In general I come across as pretty capable. Some of this is confidence, some is age and letting go of perceptions, but in some situations - it’s also masking, in an attempt to salvage my dignity or the time it would take to explain, or the lack of desire to actually have someone understand. At this point, I don’t need that often, unless the situation is dire or I’m on the verge of panic (which I’m also good at masking up until breaking point.) I’m actually out of my element a lot. Yet, somehow my children have reached adulthood mostly unscathed and largely admired in the community. But I still have to mask my struggle each time I have to pay at a machine, drive somewhere, navigate a new person or system in a business setting, or deal with any sort of unexpected event.

On the flip side Jennifer is right. Each autistic person has an area they tend to excel in. I know an Autistic lady who can’t speak and is confined to a wheelchair but she writes the most beautiful stories on her device. I know another Autistic person who seems “normal” when interacted with and has a great career from home, but can barely leave his home due to massive anxiety. Which one has it better? Neither. They both have beautiful gifts and hard autistic realities. 

My mother tends to come through for me, or my children, in these circumstances on a fairly seasonal basis. When my husband is unavailable to be the main support - she often will be available. Especially for hospital trips or city excursions. When my children were younger it was for medical/ sometimes dental/ and most school functions or requirements before I pulled them out of school and into a much easier life! Even though my two older children are considered adults, both are on the autism scale, so both have needed supports in varied ways. We often joke that our family of five with our ranging disabilities make up one functional adult. My husband has ADD and my youngest struggles with Dyspraxia and slow processing speed. Yet, each of our gifts can outweigh the others weakness. Even with 5 of us, sometimes we require outsourcing, which is where people like my mother come into our picture. It’s rare. We like to be independent when possible… but when we truly ask for it- she is often happy to comply or finds it a non issue. This blows my mind. How can it be so easy to drive and be an adult? How can she put together a big family meal so easily? How does she know how to pay parking or navigate a new city street with ease? How can she drive in the bigger cities ? Or navigate concert venues and needed bathrooms? Or book tickets or hotels? Or travel without many issues? Or figure out government red tape? Or be a safe presence to my children in an uncertain situation? Or understand school facility jargon? Sometimes I look at my loved ones doing ordinary tasks and I’m honestly so struck by their presence. 

The other day, my best friend from grade 5 onward asked me to accompany her to the nearby city to get groceries because it had been a while since we had caught up. As we were walking around Walmart

I was hit with how much capability she has. I pushed the cart as she multitasked and narrated why she needed each thing or what else she needed. She picked up a head of cauliflower and compared it to another one and asked me which one looked better… I had no idea! Luckily, she decided at that moment and I just nodded along. Then she proceeded to tell me about the salad she was going to make with it and how it would be something simple to add to her supper that night. That would be a huge deal to me! It would be the main meal because I would have put all my energy into that ONE salad. It would be a feat on its own-  ha!

Then she went over to the jewellery section to find something for her daughter’s grad outfit, as well as to find some shirts for her sons for the banquet. We attended this grad banquet at this school, together, over twenty years ago. We both sang a duet together at the ceremony but butchered it because we were holding hands and trying not to cry… I sometimes do not feel much has changed since High School, and in other ways everything has changed. But the core of how I work hasn't exactly grown leaps and bounds. Anyway, the way she talked about each item so casually and didn’t seem to panic about cost, or figuring out how it would work in her budget, or having to check with her husband about the “right item,” plus the ease in which she found her items astonished me. I just enjoyed watching her. She inspires me and I adore her. I found it incredibly interesting and like I was studying an entirely different species …

This has happened before. Since grade 5 Rachael has baffled, astounded and supported me. She states she feels the same way about how I can read and absorb books so fast or understand large concepts. In the real world though my skills do not translate very far. I love going shopping with Rachael because it just looks so easy. I love watching her shop. It’s not something that I can do easily. The only shopping I’m good at is Plato’s closet bargains to clothe my family or Costco because I’ve memorized exactly what I need to get and what aisle everything is on, but I wouldn’t exactly call shopping otherwise my pleasure. Unless it’s for Reno's or Design for myself or someone else - then I’m in my element! I’m efficient at Costco because I’ve adapted the last 15 years, yet I still get butterflies and stressed out every time. What if there are not enough funds in debit at the time? ( I check and re check.) What if I missed something important? What if the food isn't packed properly and goes bad? How does one even decide how to put all these ingredients together to make a full meal that isn't spaghetti or tuna curry?

As much as I love watching Rachael shop, though, there is a part of me that comes home a little deflated. ( Not because of anything she has done except be totally amazing but due to my frustration with myself.) My husband can always tell. He usually comes up and gives me a hug and states something akin to, “You’re beautiful the way you are and it’s great that you love Rachael so much and she loves you, but you are two totally different people. Do not compare. You are not her. She is not you. You both complement each other and I love you just the way you are.” Unfortunately, my insecurity and bafflement at how someone can be so capable (and how did I miss grown-up school?!) often comes to the surface. I don’t feel like the grown-up in these circumstances. I still feel like the teenager. It can give a little bit of a beating to my psyche. I will struggle with feelings of inferiority. She grew up in these areas and while I DID try over and over again, I did not come to the same level of capability. I did, however, learn multiple work arounds and creative ways to look like our life is sort of "normal." I compare a bit though still in these areas. I truly do. Yet, I believe God gave us to each other for a special friendship for life. My insecurity is not her fault. I continually have to give that to God. Because that is on ME. But it helps to have someone else like Jennifer or my husband remind me that I’m still worthy simply because I exist ( and Rachael often reminds me too!) It’s why I used to end all my posts with that phrase. Because God continually has to remind me and thus I also need to remind others. In our weaknesses, God IS. Sometimes our multchy manure helps the good plants to grow. (Enticing ending right?)

Song Choice: Wings- Jonas Brothers