Autism Awareness, Acceptance, or Action: Where Are We Really?

One of my contributions to Autism Awareness Month this year is going to be to take a look at where we really are. Are we working on awareness? Acceptance? Action? Maybe most importantly, I want to consider what happens when we do one without the others.

Awareness, Acceptance, Action: Let’s Take Them One at a Time

In preparing to write a couple of articles around Autism Awareness Month, I did a little bit of research. What I found and what love about this year that’s different from last year and past years is the shift from controversy about autism awareness vs. acceptance to controversy about awareness/acceptance vs. action. (I think the shift really probably started last year, and I just read about it recently.)

But even then, as we throw these terms around, maybe it is worth asking what each of those terms really mean.

Awareness

Per dictionary.com, the definition of awareness is “the state of being aware; having knowledge; consciousness.”

I know, I just knocked the socks right off of you with that exciting definition.

A whole month about knowing that autism is out there, that it exists and some people have it.

What could be better?

I feel like it is moving my life forward just thinking about it.

Not really. When you think about it at this level, it seems so inadequate. Maybe not if you do not experience it every day, but as an autist myself, it feels like nothing more than a light breeze in a world where people need a hurricane.

The strongest word in the definition, at least to me, appears to be “knowledge.” Yet, years of research, fundraising and annually “celebrating” Autism Awareness Month later, do we really have a lot of “knowledge” around autism?

It doesn’t feel like it. At least not in a way that changes the lives of those living with it. Maybe we have come a long way in terms of researchers and academians who congregate at conferences sipping wine while patting themselves on the backs for all of their accomplishments. I bet, however, those living with autism don’t feel the needle moving very fast, if at all.

Yes, we do have to do some work to gather knowledge and lay a foundation on which to build, but really it doesn’t seem to me that that is the direction we are headed. My two cents.

In my mind at a societal level, it would appear to me to be the case that we’re still back at the point of needing awareness: awareness of the pain and isolation often felt by individuals and families impacted by autism, awareness of the tremendous strength it takes to be an autist in a neurotypical world and awareness that when the very science that is supposed to help us discriminates against us it does more harm than good.

More interestingly, though it would seem like awareness would be a given at the level of the individual and her family and friends where the impacts are direct and constant such that awareness would seem unavoidable. But because we can’t at a societal level really define it, diagnose it or know what causes it, there are TONS of people living in limbo wondering whether they have it and where to look for answers. They may even try to get answers only to be told they are not autistic (when they are) because of the subjective nature of our diagnostic procedures.

Awareness, it would seem, proves much more difficult than the definition suggests.

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Acceptance

So what is acceptance? Well, again referencing dictionary.com, acceptance is

  1. the act of taking or receiving something offered,
  2. favorable reception; approval; favor.
  3. the act of assenting or believing:
  4. the fact or state of being accepted or acceptable.

But contrast that with this definition from Oxford Dictionaries in which acceptance means, “The process or fact of being received as adequate, valid, or suitable.”

These examples present a range of possible definitions of “acceptance” spanning from adequate to approval/favor. That is a wide range. As an autist, I guess I care where we land on this range. I don’t want the world to think me adequate, I would much rather have approval or favor. Maybe not favor over others, but favor in the sense that when the world looks at me it looks on me with approval and favor. Sounds really different than the world looks on me as adequate.

So when we speak of acceptance, maybe it is important that we speak in terms of what “acceptance” really means. Working to achieve the state of being accepted as adequate seems, well, inadequate!

Without regard to how we define this term, in my humble little opinion, we are nowhere near acceptance at any level. I see individuals, families, friends, educators, researchers, medical and mental health providers, researchers, you name it, all struggle here.

If I am being honest, the person I most want to accept me is me, and I work at that daily. Going out in concentric circles, I then care about family and friends, next acquaintances, etc. I care a whole lot less about the rest of the world, most of whom are people I will never meet accepting me.

As much as I would love to say that my accepting me is enough, or that family and friends accept me is enough, in reality, it isn’t. Because I need a job, because I need to support my family, because I want my kids to be able to be successful in school, etc. The reality is that we have to interact with and function in the world and to that extent acceptance (approval, not adequacy) feels like a necessity.

Action

Back to dictionary.com which defines “action” as

  1. the process or state of acting or of being active:
  2. something done or performed; act; deed.
  3. an act that one consciously wills and that may be characterized by physical or mental activity[.]

This word seems to me the easiest of the three and yet, as you will see below, poses the most danger. It is the doing of something (in my mind this also includes the doing of the decision to not do something, but not the lack of doing that happens without action or decision).

Awareness, Acceptance and Action as a Continuum

When I first considered these terms, I pictured them on a continuum. That people once aware of autism would begin to accept it and then act on it.

Awareness to Acceptance to Action

But then as I literally pictured it in my head, I began to see how many situations arise where this isn’t true. I also realized how quickly action could come without acceptance, or even worse, awareness. That depending on the order and combination of these three concepts things could go really well, or rapidly deteriorate into potentially (or actually) disastrous scenarios. Let’s consider for example, awareness and action without acceptance.

Awareness and Action without Acceptance

As autists and their families and friends start to call for action, I think there needs to be some caution here. Again, I LOVE this focus, and action is a great thing – keeping in mind that it is a great thing as long as it is right, forward-moving action. Action that comes from true awareness and encompasses understanding and acceptance. Too often, I think this is not the case.

Researchers

Researchers seem to me to be answering questions that interest them academically without much interest in moving forward the lives of those touched by autism. It at least doesn’t feel like they are working closely enough (though strides have been made here) to determine what autists really need and want. Yet, they are aware, and they are taking action. Sometimes I wish they would stick to awareness. How much different would their research questions and studies look if they were rooted in acceptance?

Holy cow! It blows my mind to even think of such a thing!

Don’t believe me? Look up a few research studies and consider the research questions they are asking. I would suggest that those questions look a lot like the come from the starting place that people with autism are dysfunctional, disordered, and need to be fixed. They don’t appear to come from the unbiased perspective of simply asking what is different, what is good about it and how do we develop knowledge and tools that help people living with autism be accepted, contented, productive members of society.

Some exceptions because I want to be fair here. There are studies showing that folks with autism are creative. I love these. Articles reporting on those studies, however, point out the inadequacies of folks with autism. Heaven forbid they would just indicate the real finding that people with autism came up with better, but fewer solutions. Somehow it feels like emphasis quickly shifts from better to fewer. Maybe I am just being sensitive. I have seen a few that focus on the better, but just a few. I am choosing not to cite them here as to not call out any individuals, but you are welcome to just look them up. You won’t have trouble identifying them.

I would argue that there was a good chance that the autists in those studies, at least some of them, came up with the obvious stuff, too. I know that I personally don’t say stuff out loud if it seems obvious as it seems unnecessary to me. Just a little thought.

In addition, I have seen a study that diagnosis may be possible via blood and urine testing which I love as it would remove from the mix the long, intrusive and waaayyy too subjective survey/interview questionnaire currently used to diagnose autism. Better yet, if it can accurately be used to diagnose autism in girls and women, the game will change for so many people actively seeking diagnosis and information.

And that would rock!

Medical/Mental Health Care Providers

If you haven’t yet entered the medical/mental health care system yet as an autist, but you are about to, hold onto your hat.
It’s bad.

It’s bad because there are some bad folks out there. Folks who think it is okay to promote “therapies” that treat symptoms without understanding causes. Folks who once they learn you have autism become condescending and refuse to acknowledge you may actually know what you are talking about. Folks who will apply all types of stereotypes and generalizations to what you can and can’t do. As an autist diagnosed later in life, I am aware of how differently I was treated before and after diagnosis, and it sickens me. I can tell you first hand as a result of this experience that action without acceptance is flat out dangerous.

It is bad because there are those really good providers who, when faced with struggling individuals who are in pain, who are hypersensitive, whose bodies just don’t seem to respond the same way to the standard treatments, are faced with trying to assist them without the needed information. My heart goes out to these well-intentioned front-line providers and their patients. Ugh.

These folks are in the place of having to take action when they may or not have achieved acceptance or may have been forced into acceptance by the failure of the body of medical science to effectively treat autists, but their need to take action is hindered by the lack of acceptance of researchers, modern science, and society. These providers may find their efforts further hindered by standard procedures, insurance companies, etc.

Educators

Educators seem to me to be also back at the place of needing to establish a better knowledge base (awareness), yet they too are action takers. They know autism is there, they (maybe) read what is available, and they apply their “knowledge” to the people for whom they are responsible.

For many kids that means academic work will be lightened after an autism diagnosis even when the problem is not academic. It means that they will be interrupted in class by folks who are “helping” them. It might mean that contextual clues are construed against them, or it could result in opportunities being denied to them.

One of my own kiddos was regularly interrupted by these “interventionists” at her school who felt she needed “help” in spite of her and her teacher’s protestations to the contrary. The woman who managed special education for the district told me she was surprised my daughter could do so much with autism. I still don’t have words for that, though it did explain many of the difficulties we were having with the school. Our difficulties started at the top – with unaware action takers.

Again, to be fair, there are some super well-intentioned educators out there, but just like the providers discussed above, they lack the information needed to truly be helpful. Why? Because “awareness” at the level of knowledge does not yet exist. Even those well-intentioned educatort miss because the gap between autists and the neurotypical world remains difficult to bridge.

Family and Friends

So here is the toughest example because it hits so close to home. It is the situation where an autist asks and asks for a need or a want only to be denied or told “no” by family and friends. Sometimes, going further, the family and friends explain to the autist why they don’t “need or want” the thing requested. They may love the autist, they want to help, and they would do anything to help, or so they say, but when push comes to shove, they just can’t ACCEPT that the requested need or want makes sense, will help or benefit the autist, or is worth the sacrifice to provide it (if there is one).

They know there autism involved, know it causes differences, take action of deciding what needs and wants they will meet or not, but lack the acceptance of the individual or maybe more likely the true nature of the differences prevents the meeting of the need/want from being met and thus, the person from feeling acknowledged/accepted.

Conclusion

So where do I think we are, awareness, acceptance, or action?

I think the world as a whole and society, in general, is clear back in the very, very early stages of awareness. At a level of individuals, family and friends, acceptance seems to be the focus of the day. More and more individuals, families, and friends seem to me to be coming to a place of understanding and accepting autism, not in the “different, not less” way, but just in the “yep, it is there in this person and I don’t care because he/she is enough, just as he/she is” kind of way. To me that is a huge difference.

In fact, to me it is all the difference.

And I think action is the place where autists are beginning to be even as they wrestle with acceptance. Because they have to be there. The understanding seems to have dawned on folks that if they want life to be better, they are going to have to create that change. Researchers, doctors and educators can’t do it. They don’t have the tools, but when taken at an individual level, much of the “stuff” (not all) that comes with autism can be dealt with. If that is where you are, I invite you to join our new, but growing, FREE Resource Library and “check out” (a little library humor there!) our tools for living with autism.

Acceptance? The hardest of all. At all levels. Because in our world, we like conformity, we like predictability, we like stability and autism challenges all of these. It challenges our worldview, it challenges our standards of performance, and it challenges our view of our world as conducive to human life (Check my post, “My Hypersensitivity Nightmare and How I Overcome It.”) If we are being honest, the struggle continues because we really don’t like the challenge.

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Autism Action

2018-08-14T18:34:20+00:00
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