As I peer around the blogosphere, I can’t help but notice various references to “Asperger’s/autism support”.
What does that even mean?
Well, if the source of the reference is from a non-autistic perspective, then frequently, there will be mentions of various “therapies” like CBT (Cognitive Behavioral Therapy – ugh), ABA (Applied Behavioral Analysis – more ugh), OTs (Occupational Therapists – what?) and several others. And often, the word “support” will be used in the context of the parents and caregivers. I won’t criticize that; everyone interacting with someone of a different neurotype could probably use support, a door that swings both ways, and that includes all neurotypes.
If the source of the reference is from an actually-autistic perspective, there may be mentions of support groups, either online or offline, often for adults, but sometimes for people of other/all age groups.
I’ve only participated in a few online support groups, mostly on social media (Facebook). I found them to be quite helpful in several instances. In other instances, meh, I could take it or leave it. In the latter case, it was other members who needed support, and I did my best to be there for them.
After a little while, though, it started to wear me down somewhat. There was a streak where it seemed like day after day brought a new round of sadness and hopelessness. That’s where plenty of us are at, and I respect that. But it can become contagious to me if I’m not careful.
That doesn’t change the fact that Aspergian/autistic people need support, too. Not all of us have the financial resources for ongoing therapy, so many of us have to go it alone, on our own.
Blogging is huge for a segment of us, and from here, I’ll speak exclusively for myself, since I can’t hope to know the specific effects it brings for anyone but myself.
I can say that for me, blogging is incredibly therapeutic at times. Just the acts of processing something, retaining my words because it doesn’t require that I “talk it out” and I can pause as needed to try and think of the most descriptive words to use. I also don’t have to worry about how I’m coming across to someone in conversation. I’m concerned about how I’m perceived by the people who read this blog, so I still speak with as much Consciousness as I can muster, but I don’t have to preoccupy myself with aspects like eye contact, vocal tone, vocal speed, awkward pauses, facial expressions, or the fact that I forgot to brush my hair this morning (oops). 😉
And that therapeutic element of blogging is augmented and reinforced by the positive feedback, the bonds of friendship, the “me too!” solidarity that proves to me time and again that I’m not a mutant, and maybe there’s room for me on this quirky planet after all because hey–I now know that I’m not alone. Rather, I’ve actually got plenty of company!
The feeling that brings is too cool for words. It’s a welcome, foreign, at-long-last craving that has finally been satisfied, bringing a sweet taste to my spirit. It might take time, effort, energy, and a few extra internet browser tabs, but it’s more than worth it.
One day I started to brainstorm about other avenues of support that I could use, on a practical level.
Of course, some of these aren’t so practical, simply because they don’t exist yet. I’m about to enter the World of the Pipe Dream Utopia, which isn’t yet reality (at least, that I’m aware of), and so this is more of a futuristic post.
My brain does that; it lives in the past and future at the same time, while going through the motions of pretending to be (in the) present. It’s probably a source of amusement for me. I’m easily amused. 😉
The principal avenue of support that I thought of is the idea of a personal assistant of some type. Someone who, for at least a couple hours a day, could run errands, make phone calls, help out in an urgent or time-sensitive situation.
For some, myself included, that person might also be able to help with executive function issues like cleaning and organizing, helping me make decisions, helping me with time management, helping me get motivated to get started with my daily to-do list and keeping me on task through the zenith of my energy and work routine, so that I don’t squander the energy and cognitive focus while it’s at its daily peak. This person could also do the driving for us, as my partner is classified as low-vision and although he has a brand-spanking-new driver’s license, it does have a lot of restrictions on it. He can only drive during daylight hours, at a maximum speed of 45 miles an hour (around 60 km/h), and at the moment, he still requires the presence of a licensed driver in the car. That…would be me. It would be helpful at times to have someone else be able to sit in for me, whether on the driver side or that of the passenger.
For me, the support concept could be carried further to include the help of another assistant at work–someone who could meet with my clientele for me.
Truthfully, some of this support I’m talking about is already in place. I’m amazingly fortunate to have my partner, who works in the same office I do. He’s willing to take over many of the more difficult tasks that require on-the-spot thinking and executive decision-making. He’ll also make many of my administrative phone calls and whatnot.
He doesn’t, however, have the levels of knowledge and familiarity with my niche subject matter that I do. Therefore, he can’t meet with all of my clientele for me. He can’t answer all of the questions that invariably come across my desk on a weekly basis. So, there are a lot of tasks that are still left to me, despite their incompatibility with my neurotype. When faced with certain situations, my brain wants to dig in its heels, freeze, and threaten to shut down. That’s not necessarily an option for me–not an acceptable one, anyway.
OK, so it’s pretty clear that I could use an additional personal assistant. 🙂
What other supports could I use?
I’m planning to go back to school for a Masters degree. There’s already some support in place, in the form of accommodations and such. For me, these include the possibility of extended exam time allotment, extended deadlines on projects or papers, the ability to take a reduced class load and still be considered full-time, and so on.
These are all excellent steps in an excellent direction. I think there’s room for even more improvement, and I have a few ideas.
Alternative exam formats would be very helpful. Most of my exams have been in the form of multiple choice. This is useful for teasing out the academic factoids, but it doesn’t allow the student to demonstrate what they truly know. The primary pitfall of the multiple choice format is that it tends toward excessive focus on the less-important minutiae–the stuff that can easily be looked up in the textbook. It invites an over-representation of the single-dimensional undisputed facts as opposed to critical thinking skills and true understanding of the material. My field is as much of an art as it is a science. Having a solid grasp of the factual foundation is important, but being able to apply those concepts clinically to real live people is even more so.
Another point of contention I have with multiple choice is that it requires the test-taker to get inside the head of the exam author. “Choose the best answer,” say the instructions. Well, what exactly constitutes the best answer? In the most recent exam that I sat for, I actually found every answer choice to be insufficient. But there was no option for “None of the above” or “Other”. I was forced to mind-read as I picked an answer from the available options. Meh.
I would love to see more essay questions. Luckily for me, my exam consisted of two parts, one of which was multiple choice, and the other, a very detailed case. The educational entity did want to see how I applied the concepts clinically, in real life. I would like to see more of that. Multiple choice is fine for basic facts and fundamentals, but when it comes to their application, an essay–verbal or written, or perhaps a project such as a slide presentation or something similar–would be ideal.
The above illustrates a very general sentiment, one that I don’t think the Asperger’s/autism spectrum community has a monopoly on. But given my tendency to over-think a multiple choice question due to my processing differences and my tendency to interpret the written word differently, this probably raises the stakes a little higher.
Job supports are another hurdle for many of us. Personally, I’m self-employed, so I’m fortunate to be able to control my environment and set my own policies and procedures to a great extent.
I didn’t fall into this career without some serious effort, though, and that effort began way back in my preteen years. I began to hear stories of people who already knew what they wanted to be when they grew up, and I started to panic a little, because I had no clue.
Finally, at age 25, after having changed my university major no less than 8 times (yep–8!), I finally stumbled across my calling, almost by “accident”, if there is a such thing.
In the interim, however, I would have vastly preferred–and benefited hugely from–a better-developed career services center/department. Someone who could have sat down with me and reviewed all my strengths and weaknesses in detail, someone with time and patience and a knack for thinking outside the box. I had gazed long and hard at the available career choices out there, and hadn’t found anything that I could get really excited about and throw myself into. As it turns out, I would end up needing to think pretty far outside any existing box in order to find my current career! My only wish is that I had found it sooner. To be honest, I’m not sure if a better career-decision support system would have helped me find my career any faster, but I don’t think it would have hurt to have had the resource available.
I’m pretty sure that there are supports that I’m not yet aware that I need, but at last I’ve identified a few of them. Baby steps, learning curve, and all that. 🙂