(Beginning disclaimer: What follows is strictly my own opinion, based on my own experience. In no way am I trying–or wanting–to speak for everyone on the autism spectrum. Everyone’s situation is different, and is highly dependent upon their own experiences. Everyone has a story to tell, and with all the cool blogs proliferating around Twitter and the rest of cyberspace lately, I’m thankful that so many of us are finding a way to tell theirs. Here’s mine…)
If you think about it, Asperger’s/autism can come with as many advantages as it does challenges or disadvantages.
Some skills, activities, and interactions come much harder to us, while others come more easily.
I tend to view Asperger’s/autism as “half-Disability, half-Superpower”.
For example, on the “sunny side”, we often have excellent long-term memories and systemizing abilities. We notice patterns that others may not. We think of ideas that others may not. The way I see it, in truth, what we seem to have is a different ability. Like the term or hate it, it definitely rings true to me.
I think that we definitely shouldn’t ignore this “sunny side” and classify Asperger’s/autism exclusively as a disability. That would be like saying “it rains on earth”. Sure, it rains. But what about all the places and times with clear, sunny skies? To focus only on the disability aspect of our neurotype would be to sell ourselves short, because we’d be ignoring the value and diversity that we bring to the world just by being ourselves.
So that’s why I think that Asperger’s itself is not necessarily a disability, per se, any more than being neurotypical is a disability (after all, allistic/neurotypical/NT people usually lack the advantageous thought processes and alternate ways of perceiving the world that we have, so just as we’re disabled by their yardstick, they, in turn, could theoretically be considered disabled by our yardstick, too! It just depends on whose yardstick we’re using).
By now, I can hear some of you groaning, and possibly wanting to smack me. But please, hear me out… 🙂
I’m not going to deny that there’s a problem. I’m not going to deny that we don’t have it easy. I’m not going to say that we don’t face serious difficulties, or that we don’t feel our shortcomings on a daily basis.
We do. Yep, myself included.
Here’s the problem (as I see it): our Asperger’s/autistic neurotype is greatly outnumbered by those who are not on the spectrum. The world is dominated by NT people. It’s built for NT people, upon their social customs and Ways Of Doing Things. And the population is extremely lopsided, and not at all fairly, either; it’s not like we’re outnumbered 2-to-1, 3-to-1, 5-to-1, or even 10-to-1.
It’s more like between 50 and 100-t0-1.
Not even close to fair.
We live in a “majority rules” kind of world, and because of this drastically skewed and tilted ratio, we barely have a fair shot at being heard, listened to, considered, accommodated, recognized, and so on. We barely have a voice. We hardly ever get heard. And we’re almost never understood.
Although it would be nice if the world was more accommodating to people like us who don’t fit the mould, I don’t currently see a whole lot of effort being invested into making that happen anytime soon (as beneficial for everyone–not just us–as such a world might be! And I believe it would be).
So if we’re going to survive, thrive, and function in a world built so very NOT-for-us, we need support. Like an adapter for a plug-in. That might be “clear as mud”, so I’ll elaborate, with concrete examples:
…..We need proper insurance coverage or other financial assistance to get evaluated properly. We also need competent, aware, respectful, thorough, and open-minded professionals who are well-versed in what spectrum classifications look like, so that we can get a proper diagnosis without the runaround, misdiagnosis, being written off, or talked down to, which is what currently happens all too often.
…..We need certain tools (“self-soothing” or “focus” items/gadgets, weighted blankets, etc) and resources (from school age through college, learning programs, gifted programs, alternative teaching methods, text anxiety support, or other accommodations) as well as adjunct services like career services, housing options, etc.
…..We might need counseling–not for Asperger’s/autism itself, but for the anxiety, insomnia, over-stimulation, fatigue, or irritability that often comes with it. We might need nutritional consulting (a lot of us are quite sensitive to chemicals or foods, or have other co-existing health issues like IBS or fibromyalgia or depression). We might need time-management coaching, or motivational/life coaching.
…..And we might need assistance paying for (at least some of) all that.
Something has to give. The way I see it, we have three options:
1 – We can continue as we are, up against and outnumbered/overshadowed by the rest of a world gone mad and over-stimulatory, with little help or support. We can continue to go undiagnosed or self-diagnosed only, left to our own devices to eek out an existence and muddle our way toward a limited number of suitable work environments. We can continue to endure our higher suicide rates (at least, according to some of what I’ve read) and high rates of unemployment (which the rest of the world can continue paying for).
2 – The rest of the world can make some drastic-but-excellent changes to suit us (and truthfully, themselves as well), creating a world at large that is more compatible with our needs.
3 – The rest of the world could remain much the same, but begin to recognize our needs and provide us with some help so that we can lead fulfilling and productive lives, so that we can contribute our full (and much-needed!) value, energy, creativity, talents, skills, and gifts to the world.
The truth is, we’re creative, analytical, inventive, systematic, hard-working, highly-detailed, perfectionistic, and focused…but…
…only when we’re in an environment that is (at least somewhat) compatible with our differently-wired nervous systems.
…only when we’re not sensory-overwhelmed.
…only when we’re not suffering anxiety.
…only when we’re not depressed and feeling hopeless or helpless.
…only when we’re not being judged or criticized.
…only when we’re not subconsciously, neurologically fearing for our survival.
…only when we’re at least somewhat “at peace”.
I’ve said before that I see Asperger’s/autistic people as fresh-water fish having to contend with a salt-water environment. A fish in the wrong type of environment will suffer, and may die early. That analogy is not entirely hyperbole or loaded with dramatics. It’s closer to the truth than most people realize.
The other concept that most people aren’t aware of is the fact that this salt-water world I speak of needs those fresh-water fish. We’re beautiful and we fulfill important niches in the ecosystem that is humanity.
But that salt stresses our systems. It slowly kills us.
So, to frame the options above in this context, we can either continue along the current path, during which all of the fresh-water fish continue to suffer without support in a stubbornly salt-water world; or the entire body of water can be made to be less salty, a move which makes it easier for the fresh-water fish to survive and flourish, but also may actually benefit the salt-water fish, for whom the water might actually have been too salty for their systems, too…whether they consciously realized it or not; or the salt-water fish can give the fresh-water fish the support/adapter systems/resources that the fresh-water fish need in order to continue to survive with improved function;.
Obviously, the first option is not desirable. I would hope that no one wants to see anyone suffer, and the hard truth is, a lot of us are suffering, even if some of us aren’t aware (I know that I was unaware for quite a while, and only became slowly aware over the years, culminating in a sudden realization why).
The second option might be absolutely awesome, and indeed might just be the most ideal solution for the world at large, but alas, it’s probably not realistic. A lot of things would have to change, including lighting, sound systems, business hours, transportation services, education/school structures, etc. As much as I’d love the world to be influenced (much!) more by people on the spectrum, it’s probably not going to come to pass in this lifetime.
The third option is much more attainable. That’s not to say that it’d be easy (believe it or not, the non-spectrum world has its own set of routines and conventions that it adheres to, and it, too, hates to change), but with some (substantial) effort, it’s doable. The advantage here is that fewer changes have to be made, the expenses involved in doing so would be lower, and these changes could be overlayed subtly throughout different sectors of society (schools, businesses, offices, clinics for services, etc). Although these changes might cost some money, there are also entities that would make money, new economic sectors that would evolve and expand, and there would be new options available in addition to existing ones.
In order to create a demand for these changes, we do need to maintain the Disability tag and emphasize the Disability aspect of our neurotype. And it’s true that in an ableist society, even attempting to appeal to their sense of compassion might not be enough.
If we’re going to impress upon the rest of the world that we need this support, being successful at doing this might just come down to knocking them over the head with What’s In it For Them if and when they agree to it.
What’s in it for them? Everything positive I mentioned above: talents, skills, gifts, creations, inventions, systems, analysis, employment (and thus shrinking the need for disability assistance, not to mention boosting our own self-identity and self-concept), contribution, unique thought processes, and so (very) much more. We have it to give.
But we can hardly do so if we’re stranded in the middle of the neurotypical ocean without so much as a life jacket. If we’re spending all of our time just to keep our heads above water and maintain our grip on all of our “spoons”, then we hardly have the energy to paint or sculpt or write or tinker when we get home; hell, we barely have the energy to express our most basic needs or thoughts with our families.
So, paradoxically, if we focus on the Disability part of the Asperger’s/autism spectrum to express what we need in a way that the rest of the world can understand, then all of us (and all of them) could benefit from the Superpower part.
Hey, it’s a thought… 🙂
And hopefully, after reading this, nobody wants to smack me ❤