Autism Acceptance

 

Elephant_in_the_room

 

 

I have been pondering the phrase ‘Autism Acceptance’ for about 8 months or so.

In recent months I have been wrestling with the widespread adoption and use of this phrase because I didn’t understand what it means.

I still don’t know what it means, but I am getting a much clearer picture of what it represents.

 

Autism Awareness/Understanding

I can remember (but only just) when ‘Autism Awareness’ and then ‘Autism Understanding’ was the phrase du jour of the online Autism community.

It made sense, at least to me.

The goal was to educate the population about Autism and how it impacts on the lives of Autistic people and the way in which Autistic people interact with others.

I also remember the turning point on social media with the cry for ‘Autism Acceptance, because Autism awareness and understanding is not enough’

I believe that longer, earlier version of ‘Autism Acceptance’ holds the answer to the question:

‘What does Autism Acceptance really mean?’

 

What do you mean?

What surprised me is that few people seemed to be able to define or even describe what Autism Acceptance actually meant to them.

Descriptions tended to be vague and there seemed to be little consensus on the real meaning.

The best guess definition I could come up with was respect.

I politely raised this point with a few people. Some seemed to be able to relate to the idea that Autism Acceptance was about respect, but preferred the other phrase.

 

Deity talk

After several months feeling uncomfortable with the phrase Autism Acceptance I finally realized the main reason for my discomfort.

Which is, regardless of how passionately someone pursues ‘acceptance’, it isn’t mine to give because it involves an element of judgement.

This is the realm of the gods.

I can treat you with respect, courtesy, dignity and kindness.

But I don’t do acceptance because there is nothing for me TO accept.

However, that doesn’t preclude you from feeling that others need to accept you, whether they do or don’t!

 

Self respect

Leaving out the semantics of acceptance and respect, there is another flaw in pursuing acceptance/respect.

It is doomed to failure before you even begin.

No one can realistically expect respect/acceptance from everyone they meet, whether or not they are autistic, that’s just human nature.

Anyone who does expect to be treated with respect and acceptance by everyone they meet, will find themselves becoming increasingly unhappy and frustrated, perhaps even angry and who knows what else.

There is an old Jewish belief/superstition about leaving a part of their home unfinished. This is to remind them that they won’t get answers to all of their questions about life and that if you try, you will end up very unhappy. The unfinished part of modern homes is often something as unobtrusive as a small section of unpainted wall, behind a wardrobe perhaps. No one else can see it, but it acts as a reminder.

Furthermore, this mindset places our acceptance by others above our own self respect – and that is disrespectful to ourselves.

This is one of the main reasons that I can’t identify with the demand for acceptance.

I don’t want it and it’s nobody else’s to give, because mine is home grown.

 

Acceptance from whom?

Most answers to this question are very generalized, up to and including ‘everyone’

There are 7 billion people on this planet.

Sometimes it boils down to a school district, or maybe a school teacher.

The term ‘Autism Acceptance’ seems to be socially constructed, meaning that it is semantically starved and has no literal definition.

It is a free-floating cultural symbol rather like ‘Victorian’ – it is in effect a mantra, perhaps even a war-cry!

But it is symbolic of something far more demanding than respect

 

Why isn’t respect enough?

Although some ‘Autism Acceptance’ advocates do acknowledge some resonance with the word respect, I have found few who believe that respect captures the meaning as they understand it.

I was puzzled why respect wouldn’t be enough and I found it increasingly disturbing that something clearly this serious was confined to the realms of symbolism an perhaps innuendo.

Logically, if respect doesn’t and can’t satisfy this thirst, then this probably isn’t about respect at all.

When people look to others for acceptance, they cast themselves in the role of the victim.

People who cast themselves as victims tend to feel like victims, think like victims and act like victims.

Some of these people may very well be genuine victims or have experience of being victims.

For those who doubt my credentials for writing about this, here’s an account of the living hell that was my 8th grade:

 

What’s in the case?

In the absence of any consensus definition, but with the clear message that respect isn’t enough, I think it is possible that underneath it all is a desire for retribution, that ‘they’ should make an act of contrition or penance, that ‘they’ should feel guilty for what ‘they’ have done, that ‘they’…….| fill in the blank | ……..

And I understand these feelings.

I have bought my ticket and paid in full.

I am very well qualified to feel like a victim and feel animosity to the doctors, the teachers that guy on the subway.

I have been there!

Problem is, it’s a cup that is never full.

 

What do you really want?

Telling someone to accept something w/o telling them WHAT they are supposed to accept or teaching them HOW to do it is inherently invalidating and perhaps even passive aggressive! If they could accept, they would. If you don’t tell them, they can’t………

Thanks to @Skillful_steps whose tweet earlier this week helped to crystallize my thoughts on this subject.

 

6 Comments (+add yours?)

  1. Colin Bowman
    Mar 20, 2013 @ 10:11:21

    It would seem that different people in the autistic-activist community proceed under the banner of different language and ideas and projects.
    I think all our human meaning is socially constructed. Ideas of autism and the autistic certainly are. I can see how different people could find what they wanted by way of correcting how autism was approached and dealt with, under ideas of “respect”, “awareness”, “understanding”, “acceptance”. Different people, in different moments, can make differing use of these ideas and words.
    I tend to think in terms of “affirming” the autistic. Openly living it out. Actively combatting others seeing the autistic in deficit and impairment terms. I can see the “acceptance” could overlap with that.
    I think that affirming the autistic extends to pursuing civil rights; especially the right to be equally affirmed in being neurodiversely different. I think aggression then comes into what is going to be a “struggle” for rights. Aggression can and should be kept civil: but aggression is probably inevitably involved in “seizing” what wont willingly be given.
    I liked your writing.

    Reply

    • mosaicofminds
      Apr 12, 2013 @ 21:16:22

      This seemed like an important point: “I think aggression then comes into what is going to be a “struggle” for rights. Aggression can and should be kept civil: but aggression is probably inevitably involved in “seizing” what wont willingly be given.”

      In the autism community I see many people actively pursuing civil rights. Some do it from a place of hurt and seem very aggressive. Others seem more calm and are focused on trying to persuade. I feel that persuasion will change society’s attitudes the most in the long run, and am worried about whether an aggressive approach will actively make people suspicious of a neurodiversity message when they hear it again presented more tactfully. But some of these more aggressive people have said that persuasion isn’t enough, and some people will remain bigoted no matter what tone you use on them…which is probably true. Probably not everyone can be persuaded to willingly extend rights to autistic people…so then what? How best to deal with people who aren’t open to change and can’t be persuaded, without driving away those who can be?

      Reply

  2. purpleaspie
    Mar 23, 2013 @ 17:59:25

    To me, autism acceptance, understanding and respect mean that the non-autistic society should include autistic people. Right now there are many, many meetings and dialogues and conferences and fundraisers that are supposed to be “for autism,” but none include autistic people. Hearings on Capitol Hill about autism don’t include autistic people. Autism Speaks claims to be THE agency for autism, but doesn’t hire autistic people or have them on their board of directors. A hack-a-thon “for autism” doesn’t include any autistic people in the hacking. These are examples of why we need autism acceptance.

    Reply

    • spectrumscribe
      Mar 24, 2013 @ 12:40:10

      This is a very helpful comment.

      There is a lot of talk about inclusion but I don’t recall ever hearing inclusion placed at the heart of the ‘acceptance’ agenda.

      Inclusion is not only a real cause, but an objective cause and without the guessing game.

      I wonder why Autism Inclusion isn’t the phrase du jour?

      It would allow people to focus their efforts (and those they petition) on the real issue. Surely that would be a welcome change, if resolving the issue of exclusion is in fact the real issue?

      Reply

  3. advocate4pda
    Mar 28, 2013 @ 10:15:48

    I have used acceptance in many of my comments and blogs; I have full understanding of what it means to me and my family, however, everyone sees things differently. I really like your blog, I like the way it made me examine closely if acceptance was enough in what I was trying to say. I had seen inclusion for others happen only under duress, so for me, I was thinking people sometimes use inclusion without truly accepting, but I suppose on the flip side, some people may use the term acceptance without necessarily understanding what that involves. The valid point made by Purpleaspie is something I have felt deeply about, from attending autism conferences, to fund raising events – Usually in common was the fact they were organised,hosted and attended by those not on the autistic spectrum. I stumbled across this, which I hoped may be a starting point in the right direction regarding Autism Inclusion http://autisminclusion.org.uk
    Best wishes

    Reply

  4. mosaicofminds
    Apr 12, 2013 @ 13:27:41

    Here’s what I imagine when I think of “autism acceptance,” in no particular order.

    * Autism is familiar enough to people that people don’t look askance at rocking or flapping or other harmless autistic behaviors. (They may tell someone to stop if it’s a situation where the behavior is actively disruptive or dangerous, but I’d imagine such situations would be rare).

    * Autism is familiar enough that people don’t automatically interpret an autistic person’s behavior as rudeness, or immaturity, or laziness, or not paying attention, or whatever it would mean for a neurotypical person. They would at least consider the possibility that the person just doesn’t understand social conventions.

    * TRIGGER WARNING Autistic people are universally seen as people, not as changelings, or something that looks like a person but is really empty (as Lovaas put it), or any of the other awful metaphors people use. If anyone talks about autistic people like this, people put them down, as they would with someone using the “n-word” or some other unacceptable slur.

    * In practical terms, seeing autistic people as people means that they are interviewed as a matter of course in any news story involving autism. That in research with a survey component, they and not just their parents are allowed to give their opinions, to whatever extent their verbal ability allows.

    * Autistic people are considered equally for jobs. This means that, like anyone else, they should be judged by whether they have the skills needed to do the job.

    * Sensory issues are familiar enough that every public place doesn’t have ear-breakingly loud music all the time. This would help everyone, not just people with sound sensitivity. Starbucks is often used as an office, so why do they have their music turned up so loud when lots of people get distracted by background noise? Five Guys doesn’t have megaphones so cashiers have to shout over the music when the order is ready–why should they have to hurt their throats? A similar point could be made for fluorescent lights.

    * If someone says they have autism, people don’t immediately think of stereotypes, from the institutionalized nonverbal kid unable to function to Rainman, and feel the need to say “you’re not autistic, you seem so normal” to dispel those stereotypes.

    * Teachers are trained as a matter of course in how to deal with difficult autistic behavior, such as how to prevent meltdowns or deal with them once they occur. Teachers should have a basic understanding of how autistic people learn, how to “read” their nonverbal cues, and how to make themselves understood by autistic students.

    * There are services, whether public or private, to help autistic adults live independently. They should not have to choose between total independence (unfeasible for some), living with their parents (embarrassing and in some cases emotionally difficult), or living in institution (giving up all autonomy). There are already life/organizational coaches for ADHD. What about coaches or part-time aides trained to support autistic people? What if every city had classes for autistic people on how to navigate office politics, advance in their careers, forge better relationships, improve their executive function, and so on? I’m a little vague here because I’m talking about something that doesn’t exist yet, and that could look very different depending on who provides it and what sort of funding exists…

    * There is a wide range of scientifically proven, ethical early education programs for teaching autistic kids the social, communication, and academic skills needed to get along in a mostly non-autistic world. These would be cheap enough that most families can access them, or paid for through the government’s educational budget or through government assistance. These programs are taught by people who respect their students. The programs would be designed to teach kids skills and empower them to reach their own goals rather than to turn them into carbon copies of their classmates.

    Does this help? Is this anything like what you mean by “autism acceptance?”

    Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: