Autism – Is it really our duty to educate you?

Artwork by San Base

Many within the Autism community seem to feel that we have a duty to help educate ‘professionals’ by exposing our own personal experiences of Autism to them with in Autism specific forums.

Personally I’m not at all sure that I agree with this premise, as it all too often holds the potential to place  those of us with Autism,  in the unenviable  positions of feeling over exposed.

Which for many, can also amount to making us feel vulnerable.

The belief that it’s up to any one particular minority group to educate the wider community in order to create the understanding that they have the right to be treated as equals, is an issue that many other minority groups have faced.

And just like those within the Autism Community, many other minority groups have also had to cut their teeth on the harsh reality that not everyone who’s interested in you, is genuinely trying to help or understand you.

For example, back in the late 70’s, early 80’s, a male a researcher who was interested in researching gay males, pretended to be a gay man himself in order to win their trust,  and acted as “lookout” for them in bathrooms and public venues, whilst at the same time recording details of their interactions with each other.

He  then began following them back to their cars, taking down their number plates and with the help of a friend in the DMV, used that additional information to track down their real names and addresses so that he could turn up at the homes of these men, some of whom were married, and proceeded to blackmail them in order to gain more personal information about their lives, habits and preferences, all in the name of  his “groundbreaking” new research.

Since then, it has been widely recognized by governing bodies, that lying, deceiving or in any way attempting to befriend or pretend to be a member of a minority group in order to attain personal information, is not just morally and ethically wrong but also potentially emotionally, psychologically and in some instances, even physically harmful.

Yet despite this, there are still members within the Autism Community who seek to enable and even justify the actions of professionals who routinely intrude upon the privacy of those within our community, by saying that ‘we as Autist’s need to teach professionals the truth about Autism’.

Yet I believe it is wrong for everyone within the Autism Community to constantly be made to feel as if it’s up to “us”  to teach those who are often in positions of power over us, the truth of Autism via the revelations, either intentional or otherwise, of our own personal experiences.

This belief presents many within the Autism Community with a false sense of security because it implies that all ‘professionals’ are trustworthy individuals who are  not only capable of viewing and understanding individuals with Autism as they wish to be viewed and understood, but are also willing to fly in the face of past theoretical frameworks, in order to genuinely present new research.

Yet, the truth is, those of us within the Autism Community, have no way of knowing for sure, whether or not said ‘professionals’ are intending to do either of these things.

Time and time again, it has been shown that those researching Autism often can and do, come up with new twists on the same old theories that many of us have found to be repugnant, simply in order to make a name for themselves.

Whenever such instances occur, we feel betrayed, lied too and let down.

And it is only after the fact that we realize all too late, that we’ve either misinterpreted their ‘professionals’ interest in us, or understand that they’ve misrepresented their intentions towards us in the first place.

Which ever way it goes, it’s always left to those of us who are not too afraid, or who have not been made to feel too vulnerable, to speak out.

Many of us lose friends along the way in doing so, as it can be difficult for others to understand exactly why and how another person may feel betrayed by participating openly within what they had assumed to be an Autism only group.

So insidious has the automatic acceptance of the “right” of ‘well meaning professionals’ to lurk within our groups for the purposes of ‘educating themselves’ become, that many no longer question it.

Yet I don’t believe that research ‘professionals’ have anymore  “rights” to interact with ASD specific groups than a gynecologist  would automatically retain the ‘right’ to interact within feminist groups, simply because they contain women who may discuss their private anatomy.

I think it’s time we took on board the lessons that have already been learned regarding the pitfalls of allowing professionals to engage with us so easily and without restrictions of any kind at all, on the internet.

I think it’s time we stopped thinking about Autism in terms of our perceived duty to try to educate our way into acceptance and equality and instead focused on protecting the “rights” of those within our community to feel safe, to remain free from harm and to not be taken advantage of by others when participating in online ASD groups.

We, as a community, need to keep in mind, that not everyone with Autism is either fully informed of the participation of ‘professionals’ within ASD groups, nor aware of the potential consequences of sharing highly personal information within such groups, should anyone within them hold any alterior motives for doing so.

Wouldn’t it be far easier for those who wish to engage with ‘professionals’ on the internet in order to ‘teach them the truth about Autism’,  to actually do so in groups that are openly and specifically  designed for that purpose?

Rather than allowing ‘professionals’ access to any and all ASD groups without question?

Wouldn’t it be easier, if we as a community, made a stand and decided that ASD specific groups should remain exactly that, ASD specific.

Just a thought.

 

Artwork by San Base

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15 thoughts on “Autism – Is it really our duty to educate you?

    1. Yes we do Yoshiko, but ask yourself why, after all these years, are we still being so misunderstood? We’ve been telling professionals for years and years how we think, yet still there is no broader increase in levels of awareness within the community. Something is very wrong with the way in which researchers are going about things……. I just think it’s time we started caring more about our own protection and a bit less time on constantly explaining ourselves to people who seem to have no intentions of ever ‘getting us’.

      1. Because the professionals can not go into our world. At first when I realize I have autism due to my family say so and do self test, I can’t accept it. Now, I am learning to accept and embrace the real me.

  1. I’ve had some really vile experiences in trying to stand up for myself in trying to engage those public agencies that are designed to assist us in employment disputes where our difficulties as Aspergers people threaten our livelihoods. Those particular bureaucrats are not educated on how we function. We lose. Our collegiate system is still so geared towards the success of neuro typicals that we are shunted off, our talents wasted. They need to know how we work!!! I’m so fatigued from having to explain, often in vain, our differences and why people’s observations and judgements projected upon us, based on neuro typicals, are wrong.

    1. I agree that the way in which we are being understood needs to change Jessica……. The problem is that researchers still aren’t doing the right thing by us. Instead of conducting thorough research, too many of them are picking bits and pieces of information out of on line forums and making those bits of information fit into the same old world theories over and over again. This is why, despite years and years of talking and explaining our perspectives, we never seem to get anywhere. There needs to be a complete change in researcher perspective and we need to protect ourselves from being exploited in the old ways until that change occurs. Asperger’s became an official diagnosis in the 90’s…. that’s over 20 years ago now…… if they don’t understand us by now then clearly we’re not the ones with the comprehension problems. They are.

  2. I agree with your well-expressed points about “professionals” using deceptive tactics and our need to be judicious about how and when we open up. On the other hand… a wise woman once told me: “Mariana, you are hard to get to know. Yes, it is my/our responsibility to ask questions and take the time to know what is important to you, but there is also a responsibility on your end to share yourself with the people who are trying know you.” That conversation 15 years ago made a lot of sense and the application of her advice has been immensely helpful. Incidentally, at that time we were partners in a volunteer project and over the years became very close friends – well, at least as close as I am able to get! So I would suggest that whether it is considered a “responsibility” or not, life is richer when we help the (safe/trusted) neurotypicals in our personal and professional lives understand us.

    1. I agree with you to a certain extent Mariana. Yes it is important for those of us who choose to share our perspectives with others to be able to do so, but I also feel that is equally as important to recognize and respect that there are individuals with Autism who do not wish to have every word they utter or every thought they express used by others. Some people in online forums wish to only share their experiences with others on the spectrum. I think this needs to be taken into account and respected as a right to do so. Too many online forums and groups these days incorporate professionals without the knowledge or consent of those who participate in them. Not everyone feels the need to be seen as setting the ‘benchmark’ for what Autism is or how it is experienced. My point simply is that Autistic people are people first and as such, should have as much right to go about their lives, both in the real world and online, without automatically feeling as if they have society automatically requires them to hold up some broader obligation to educate others. We don’t want every experience we have to being viewed as a ‘teaching moment’. We all deserve the right to simply just be who we are without having the fact that we have Autism used against us as an incentive for others to breach our reasonable expectations to privacy.

  3. If these researchers are using pieced-together information from online forums, then how well accepted will this research be? I would hope that any sponsoring agency or foundation would want more firsthand evidence or interviews. About these well-meaning professionals being allowed into online support forums, are they introducing themselves as researchers or therapists? Or do they simply log on with a pseudonym and troll the forums for conversations? As long as each person participating knows who the others are, and that the person being talked to is a researcher looking for clues, it could help both parties.

    1. I have no problems with Autistic individuals choosing to take part in research or engaging with professionals. I agree that if it is done ethically, both can benefit. What I do have a problem with is the idea that everyone with Autism automatically wants to be researched. Not everyone does. Why can’t interested professionals set up their own groups and invite Autistic individuals to join their groups, instead of feeling as if they have the right to join ASD specific groups simply because they are interested in doing so? It would be both safer and much more ethical for professionals to create their own groups so that those who wish to “educate” them can do so openly and willingly and those who simply want to exchange experiences and chat with other Autistic individuals can do so. To me this makes perfect sense but I have yet to see any professional set up a group with this in mind. To answer a few of your questions, no, not all professionals declare themselves to be so Ron and that’s becoming a big problem. There have been instances within the last 5 years in which a professional joined many ASD groups declaring themselves to be on the Spectrum. It was only after that person had been accepted by many, that they informed group members of their occupation. After that they swiftly began promoting their diagnostic services and stating that they were looking to do research on Autistic people. They then began publishing several research papers and a few years ago, a book on ASD. When members of the many groups this person had initially joined as a person on the spectrum, began questioning the authenticity of this person’s diagnosis, they then set about denying that they’d ever claimed to have been on the spectrum and started deleting all comments and posts to the contrary. This professional’s book has not only sold well but they’ve also gathered many past and present clients through the “trust” they had initially established by claiming to be on the spectrum. This kind of bait and switch deception is actually happening. I’ve seen it with my own eyes. And it is not harmless. Several people have been left feeling hurt, betrayed, lied too and extremely vulnerable. The complaints process can only work if it can be proven that a professional has indeed lied or deceived others. By deleting any and all past posts and comments, the professional also deleted all proof of their wrong doing. Another point to be made is that the bodies that govern ethical research behavior can only act once they’ve been made aware that a researcher/professional has behaved unethically and by then of course, the harm has already been done. Another point to bear in mind is that not all individuals with Autism are aware that such governing bodies exist, let alone hold the information required as to how to make contact with them. It’s not as if those who are behaving unethically are going to put up a post stating the name of their profession’s governing body, contact details and encourage any one who feels they’ve behaved unethically to call them….. Besides all of those points, why should any member of a minority group, regardless of which ever it is, be expected to constantly put up with the ‘outsiders’ joining in and having their say or taking away which ever bits of information they wish too?????? Don’t most minority groups maintain the right to say NO???? Why is that individuals with Autism are assumed to not have the same rights to do so????

      1. If this professional did the things you mentioned here, their behavior is reprehensible. It is worse than bait and switch, it is fraud and deceit. By passing himself off as ASD, he perpetrated impersonation for the explicit intent of gaining trust and gathering information. It should be brought to the attention of an appropriate body which governs the certification and monitoring of credentials so that they can be made aware of this and appropriate actions can be taken in order to protect other innocent people from being defrauded. If there is a way to retrieve archived forum comments so that there is evidence of this fraud before the comments were deleted, then that would be most helpful. Your suggestion that the professional form his own group or begin their own private forum is the ideal solution. That way, any ASD person would have foreknowledge of what their participation would entail and would be giving permission for the researcher to use their interactions in his or her research. I would be highly skeptical of becoming a client of this professional, considering the fact that he or she began their association with the autism community by perpetrating a fraud like this.

  4. You raise some very valid points. Points that I have never given thought to. I’m one who was so tired of the ignorance that I thought sacrificing part of my world for the greater good would suffice. I was wrong. One lesson I did learn in the immediate…people learn about one’s situation or circumstances the more they have to scrutinize and judge. Seldom does anything positive come out of such exchanges.

    I have learned a hard lesson. People don’t need to know more about us to accept us. They simply need to live and let live in peace.

  5. Reblogged this on A Voice from the Spectrum and commented:
    I’ve gotta admit that I was one who felt personally responsible for educating people, in my community mostly, about autism. However, my attempts to education were not always well received. I’d given some thought to the process, but was not able to put it into words as it had been done here. The words and reasoning in this repost have given me new life and understanding in how I have felt betrayed by my efforts in some ways and ostracized in others. Thank you, Seventhvoice for putting into words what I could not.

    1. You are so very welcome Autismslove. It has taken me an extremely long time to narrow down exactly what was about the notion that it is our “duty” to educate others about Autism. But I have finally come to the conclusion that what started out on our behalf, as an attempt to create awareness and understanding, all too soon became transformed into a “duty”, that everyone with Autism is not only presumed to share, but also ends up being the very weapon with which some, including those both within our own communities and those outside of it, choose as a weapon of choice, to decry us, if we don’t always tow the party line and agree to having our personal lives held hostage to the idea that everything about us if for public consumption. It is not. And no one should ever be made to feel that way.

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