Adult Aspergers Syndrome and the notion of what support is

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When I read about "supports" for AS people, they are generally focused around the central idea of helping to "adjust" the person with AS to "fit in to NT ways" in order to succeed. Fitting in is presented as some kind of ultimate goal, an unquestionable good.

This recalls the legend of Procrustes is about fitting in, and anyone who knows that ancient Greek story will know what I mean: travellers to Athens were 'adjusted' to fit the size of Procrustes'bed: the too-tall were chopped down to fit, the too small were stretched - one size and only one size was acceptable to Procrustes, difference was a defect which was not tolerated.

Earlier this week I was reading a detailed piece on Dirac, and how he would probably not get tenure at any university now, because of the modern emphasis on the necessity of being a "team player" (the imposed requirement of sociality in the workplace,). It's impossible to imagine someone like Dirac playing the academic games that infest universities now, the endless faculty meetings, the burden of boring administrative chores, and so on. The Diracs of today - eccentric, creative loners in science - are disadvantaged now in a way that eccentrics like Dirac were not in his time. From everything I have read about him, Dirac probably couldn't have changed, even if he had wanted to. He was what he was. And his work was highly valued and of enduring relevance. Being who he authentically was enabled him to do what he was most gifted at doing.

So what is support really as it is functioning vis a vis AS today? Is it centred on the Procrustean notion that you must be adjusted to fit into the prescribed NT size/way of doing things?

I can think of some supports that might be really useful, (though I haven't heard of them happening) such as:

Change in HR practices to show respect to AS interviewees = no multi-person panels where different people fire different questions at the applicant - a multi-tasking processing nightmare for AS people.

Change in the absolute and prejudiced dogma of "everyone must be a team player" - which penalises introverts as well as AS people. Work is not a social activity for AS people in the way it is for most NTs. So which party is expected to change? And where is the support to facilitate team inclusion, and to over-ride the very real team exclusion inflicted on AS employees?

Change to set up an early report process of bullying in the workplace for AS employees..

The option of answering questions at a job interview either verbally or on typing them (interactively?) on a computer would be a support some AS people would perhaps greatly benefit from.

....

Yet it seems to me that the actual kind of "support" people are given is founded on the notion that AS people should want help to be more NT, - it's founded on the ideas of the dominant group mentality, ("they should want to behave like us, because we are better than them" rather than being a two way street founded on mutual respect, acceptance of difference and initiatives designed for genuine empowerment, rather this fakery of fitting in. Thoughts?

Though perhaps I am missing something here?

I'm at this point in my life that I feel like I am not going to adjust myself to someone else. It's uncomfortable and doesn't come naturally to me.

In the end support to me, means coming up with comfortable compromises. Something that NTs and people on the spectrum could agree so neither is bending to the other.

NTs should be more versed and well educated in all avenues of mental health and Autism. Those on the Spectrum should be given disability rights and should be given reasonable compromises within the avenues of life.

I think at this point NTs need to be more understanding and somewhat accommodating to those on the Spectrum. While those on the Spectrum simply need to open up more communication and more dialogue with NTs when something does cross their boundary and their lines.

I would go a step further and suggest that there has to be widespread attitudinal change in the way that AS people are perceived by those who want to "help" them. Instead of starting from the defect-driven point of "what's wrong with this person", a better foundation for NT helpers to build support structures on is a strengths-based starting point of "what's right with this person".

Constantly I read and hear of help and support being given all the time and yet I see no evidence that it is effective in positively changing lives nor life outcomes for the ASD population as a whole.

In fact I have a dark suspicion that much of the so-called support is actually social control, intended to benefit others, not the recipient of the "help". I think we need a whole new conceptualisation, an over-arching one that is built on respect and validation not deficit thinking.

This I fundamentally agree with as well.

I totally agree with this. I often get people "supporting" me who aren't helping me at all. They're just harassing me. I would be better off if they left me alone.

I've worked in factories, at a DA's office, a probation office, law firms, universities, self-entrepreneurship and more.

But the most satisfying position I ever had was sitting on a stool picking blueberries for $2 a bucket. No one micromanaging me over my shoulder, no multitasking, no imbecilic office politics or social climbers trying to beat others out, and so on. All I had to do was follow the single direction and pick only the blue blueberries, not the unripe green ones. I did that and I always got my $2. Incredibly, what I presume to be NTs would frequently present their buckets which contained considerable numbers of unripe green blueberries despite the single clear instruction. Their buckets would get rejected. Mine never did, a fact in which I took considerable pride. But the main thing was: no people hassle. You did your work, you got paid for it, you went home. The only problem I had was with the weather; sometimes it rained and sometimes the sun was too hot. But I had the option not to work when that happened and when I did work, I could do so at my own pace. Despite the weather, I wish all my work days could have been blueberry picking days.

Autistic people need to change these attitudes also. When autustics have fought for change in attitudes changes have been made. Autism Speaks does have 2 autistic board members. Cynicism about this is well deserved but how many of you thought you would see one autistic board member never mind two?. This did not happen because of the good of thier hearts. There is a boycott of sponsers and a couple of companies disassociated from them. While they control a lot of the message on mainstream media, online it is very different story, there claims are bieng refuted at every turn, they were forced to eliminate comments on thier website. Because of "Neurotribes" the all negative all the time messages have eased noticibly.

This should be a time of hope with not only our accomplishments but the spectacular example of what is possible shown by the LBGTQ advocates. But at this very time a large segment of autistics are rejecting these changes in attitudes and want to view autism as mostly a negative to a horrific curse. We have really taken significant steps backwards since 2013 IMHO.

I agree a large percentage if the blame lies in the actual impairments and the continually negative messages coming from the outside leading to internalized ableism. It is not only unfair, it is grossly unfair the we have to do 95 plus percent of the work caused by situations beyond our control and at times beyond our abilities. As the cliche goes it is what it is.

Last edited by ASPartOfMe on 24 Jun 2016, 2:05 pm, edited 3 times in total.

** Double Post **

Last edited by ASPartOfMe on 24 Jun 2016, 2:04 pm, edited 1 time in total.

These are great ideas.

This is what would help me:

More advance notice of changes, especially changes to my schedule.

Everything needs to be put in writing. Communication does not have to be exclusively in writing but in addition to any spoken instructions. If it is spoken and not sent in an email I will may forget or just not really process what was said.

No interviews, employee reviews, etc. in public places like coffee shops or restaurants. Any important discussions MUST take place in a quiet room.

A more diverse management structure, more horizontal rather than vertical. Meaning that an employee wouldn't be at the mercy of what just ONE supervisor thinks of them or how that supervisor treats them.

Different types of training available for people who learn differently. For me, it needs to be training that is done hands-on the way it will actually be done. Not a pretend thing on the computer, and not someone just "telling" me and giving me verbal instructions.

NO MICROMANAGING. No quibbling over how many minutes it takes to do something or exactly what steps I took. As long as I'm getting my work done it shouldn't matter. Understanding that different people work in different ways and we don't all have to do it the same exact way.

Employee recognition that is not based on having to play show-and-tell or brag on yourself.

But most of all, being able to give regular feedback to management on how things are going and how the systems that are in place are working (or NOT). And having this be not only expected but appreciated since it is intended to help the company to succeed. Less top-down communication, more ground-up communication, which would probably mean cutting out some of the middle management that gets in the way.

I find myself conflicted in this conversation. On the one hand, as someone who is working towards a diagnosis, I find myself thinking what accommodations might mean in my future, as I plan to be a teacher. With the slant of education being more group dynamics, I find myself (even as an Instructional Assistant) being exhausted by how much team work/ group meetings that we have to do (along with the noise level of middle school students -.-) A student noise and meeting free prep to recharge/ be able to continue to function would be something I would consider a need/ an accommodation to be able to do my job. Probably along with a safe / therapeutic space I can go to and things being communicated in email as I'm better with writing my thoughts than speaking/ less misunderstandings occur.

On the flip side, in my work, I've had students who will scream, bite, attack, and throw things at themselves and others. I also have students who need multiple prompts to communicate or even a student who on the higher end of things, would constantly rock back and forth in his chair and blurt things out (often innapporiate things) in the middle of general education classrooms. Should we ask these students these students to conform to NT standards?

I'm unsure. If a behavior is harmful to themselves or others, or are being a public disturbance (an example of this would a student who screams all day to the point where the whole campus can here them), I feel it should be corrected and channeled into something more productive (art therapy, DPT, etc)/ not harmful.

As for the other student who was a rocker/blurter,I do not propose eliminating his stimming but rather, change the behavior to something silent/ more apporiate to a classroom setting. The fact is that as a society/ species, we have public spaces and certain behaviors that are not considered okay in them. An example of this is talking or playing on your phone in a movie theater as it's distraction/ considered rude as you've entered a social contract when you pay, that you will be silent (outside of laughter and tears) so that all may hear and enjoy the movie.

I think, as it has been stated on the needs of accommodations, a fellow teacher described it as a series of ladders to reach a book. Some ladders may be shorter or longer than others. But as long as they help you reach the book, then you should have them. For those who have the ability/ cognition to recognize and speak up for their needs, then they must. Until then, those who are NT and are in charge of what accommodations may look like, will continue to push the one size fits all when it does not.

But I believe the issue where the one size fits all comes from (and because of/ is still so preveilant) is those who can not advocate for themselves or have no ability to communicate other than injurious behavior or screaming/guttural noises and have no self agency. At that point, those who are NT take over and do what they think is best/ often do what they think is best for them and what does the least amount of harm to those who have been caregivers (I am not saying it's right but it is often the facts)

I'm unsure how change it other than those who have autism to begin to advocate for themselves and for those who can not/ ask for more support services for families and those with autism.

I have one of those jobs in which I'm largely left alone. Which is good because I don't have micromanagement issues. And, I get to figure out how to do stuff at my own pace, as nobody else can figure it out for me.

I'm largely left alone too but they still have ways of micromanaging us through the software we use. Which is worse in way than having someone look over my shoulder, because it's all computerized and set up according to some pretty rigid and unrealistic standards. Ironically the managers are more understanding when they see what is going on in person.

[quote="ASPartOfMe"]
... at this very time a large segment of autistics are rejecting these changes in attitudes and want to view autism as mostly a negative to a horrific curse. We have really taken significant steps backwards since 2013 IMHO.
....

Thank you all for these interesting responses. I'm fairly low energy at the moment, emerging from a fierce bout of the flu, so for now I'll use that low store of recovery energy to address this important issue raised by APOM, because it is something I have been pondering a lot lately, with some revision to my own thoughts about it. Given the post-viral brain fog I am not at my sharpest ATM so it's a bit of an effort to focus as much as I would like.

1. APOM, I think the phenomenon you have noticed (as in the quote) is real. At first it seemed to me to be perhaps just a few tidal waves in the ocean of Wrong Planet. Now I think it is much wider than that.

2. The "curse" proponents seem clearly motivated by extreme anger. I have really changed my view on the reasons for this anger (now I see it as accumulated wounds on an emotional and psychological level which reach a critical mass in each person). And this anger is powerful, it needs to go somewhere, so it is being expressed.

3. Unfortunately it seems to be being expressed at the wrong targets (other ASD people). The targets are low hanging fruit, relatively powerless people in a disempowered group, and probably seem a safer and easier target for attack. However I contend the anger is misdirected, away from the institutions and the theorists who have stoked the "ASD is always and only a deficit" fires and dedicate their efforts to maintaining and promoting the myths which feed stigma.

4. There is a very noticeable cohort difference. Perhaps members in our older age group, APOM, tend to notice this more. Of course we feel and experience anger - in different ways and at different times - because there is considerable injustice, inequity, oppression aimed at ASD people as a whole and we are angry with the structural forces which enable the manipulation of reality and seek to embed it in the not only the public consciousness but also in the minds of their target population.

5. Most of the young "cursers" if I may call them that for the sake of convenience, have truly suffered. We older people have suffered too, though by and large we are not cursers, so I don't want to detour into the nature of our past suffering, other than to say that the one over-riding thing that unites all members of the spectrum is imposed suffering.
The word imposed is crucial here.

6. I am guessing that many of the young cursers come here in a desperate state where their pain has reached the critical mass point. They see WP as the only safe place to express the by then intemperate and overwhelming rage from thousands of micro and major aggressions.

7. We who advocate for ASD dignity and respect, for the recognition of ability in disability, tend to be very unsettled by this. We have a vision of a better world for ASD people, little realised at present. We see the wasted strengths, the oppressive structural barriers and our hearts and souls are moved by the tragedy of the totality of oppression, marginalisation and defamation. ASD people are defamed every day. Every minute of every day. This is currently our collective tragedy, whether we are cursers or not. And as an entire group, perhaps we should be more angry about it. Anger is a very motivating force, (history shows) and can be channelled constructively.

8. I have recently come to the view that we have to look beyond the cursers' anger to their unhealed suffering and
have begun to ponder why there is an almost complete absence of a healing narrative in the ASD community as a whole.
There is an imposed "treatment" discourse that is very prominent everywhere, though the actual values that underlie the treatment discourse are inimical to the liberation and potential of ASD people IMO. They are far more in line with the cure discourses. Treatment is not necessarily the same thing as healing, and in the ASD discourse it is never the same thing. When treatment is underpinned by values of imposed control, by a dominant group on a minority group, it is inimical to healing.

There is much more I would like to say about this however for now that's it. And Cloudcrap is NOT helping.

The multiple person panel interviews will never go away as it is cost effective. (No one cares about the human soul cost)

Way back when it may take three months in a larger company to grind through all the candidates, because you would have each person individually interview the people. It is a PITA to get everyone to gut out free time to do this. My sister (works in HR) says it is easier to have the every one there at once. Her company has senior office drone, manager of office drone, manager of the section, and head honcho of that specific divison in one the hiring panel. Why? Because if new hire winds up being a time sink dud, there is plenty of blame to pass around. All those people okayed the new hire and had time to discuss the candidate. There is no way to blame shift when head office is screaming about why someone got canned. Firing people costs a company time and money.

The suck part for the potential job seekers is you may have 6 people sitting in on your interview. That isn't even comfortable for NTs.

For the soon to be teacher. This is what my public school puts you through.

If you are one of the few chosen out of the 500 applications for that one job position.

HR does an initial interview to make sure you have all the credentials and licenses for the job.

The "job interview" has the grade head teacher, two senior teachers, union rep, principal and random non teaching professional. You will be grilled on a zillion things about anything regarding education and teaching.

Part three...if you make a call back, you must give a demo lesson to the same group.

Part four...Last is you are interviewed by two BOE members and the district wonk. You will do questions and the demo lesson on this last shot.

If you make it through all the above BS, you be offered a contract for a year.

Yeah. I know.

Believe me, NTs can suck at interviews and hate being all happy and dynamic too. I would love to just do my job, and GTFO at 4 pm. Micromanaging bosses need to DIAF. The concessions you want, a huge chunk of NTs want too.

The tech industry went from lone wolf geeks to Google group hug nonsense. How does crap like that happen?

The neurotypical candidates have the option of taking a pre-job interviewing course which is designed for neurotypicals by neurotypicals for future interaction with neurotypical interviewers, or using the services of private neurotypical career counsellors for the same kind of coaching for neurotypicals by neurotypicals.

This puts ASD candidates at a further disadvantage, raises an additional barrier to their hope of participation in the workplace, because there are virtually no options for ASD people to receive similar preparation on an equal basis.

My overarching point is really that the silence on the various kinds of structural barriers which prevent so many ASD people from participating in the workplace is "loudest" from the support organisations whose home pages make grand claims of improving the opportunities for ASD people, singing their own helping praises loudly, yet do very little as far as I can see to walk the talk. The notions of support that they offer tend to be based on NT notions of support. This is all wrong, IMO.

I didn't make that so clear in the OP. (Sorry)

How many of those organisations in their inaugural phases ever canvassed ASD adults (before designing and offering services at all) and asked them "what kind of goals do you have and what kind of support would you like to see created and offered?"

Closed or unrepresentative decision-making in support organisations means they wilfully or mindlessly exclude or fail to involve the voices or interests of the people they pretend to serve. Nothing about us without us... the paternalistic model of support organisations is in itself a barrier for ASD people.

Hope you feel better soon.

This backlash as I call it leaves me feeling a hypocritical contridiction. The key value of nuerodiversity is listening to autistics. As an Aspie-Autistic myself I take that seriously and literally. When this first started in 2014 I blamed it wholly on internalized ableism and in many ways I still do. But I realize by doing that I am doing exactly what has been done to us, invalidating those who say thier difficulties are due mostly to Autism, not society. So I have altered my thinking and say difficulties due to society and autism caused impairments. Dispite my adjustments in thinking I am an ND movement supporter. What is very disturbing is the stereotypes that are widely believed about who we are. I will continue to protest these even if these stereotypes become conventional wisdom and that makes me as much of an outlier in the autistic community as bieng Autistic makes outlier in general.

I have noticed that while the autism is curse is still a thing most of the disease model supporters do see good things about autism but feel the impairments outwiegh the good things and thus should define the condition. Most of the Autism as impairment believers are not in favor of mistreatment and believe Autistics should be treated with respect. That should align them in many ways with the ND supporters but from what I have seen because of the stereotypes they nearly uniformly believe the ND movement is oblivious to what they go through and thus are harming them.

Why is the big question. Not sure.

Mellenials are thinking differently and not only in autism. We have seen that in the American electorate since the 2008 election and we saw it with the Brexit vote. Back to autism, I do think the technology has allowed negative messages to be delievered on a much more continual basis. Going back the original topic of this thead ABA was not the "gold standard" treatment when we were growing up. But this age divide idea needs to approached with caution as it has great potential to cause divisive stereotypes. Alex Plank and Ari' Neeman are in thier 20's. Jonathan Mitchell is around my age.

Aspergers was removed in 2013 the backlash began in 2014. This is a textbook example of the truism that correlation does not mean causation. But I can't shake the belief that the debates over its removal enhanced the idea of seperation between Aspergers/very high functioning Autistics and "the rest of us" informing the beliefs that
Aspergers/HFA autistics should not advocate for more severe autistics and that there are a lot of not real autistics because of over diagnosis.