Posts filed under ‘Autism/Asperger’s’
Autism used to be divided into “High-functioning Autism” or Asperger’s Syndrome and “Low-Functioning Autism”. Commonly these are conflated with the ability to speak and various self-care skills. Though these have since been lumped together into one diagnosis- Autism Spectrum Disorder (ASD) in the DSM-V in the United States. But people still use HFA/LFA and Asperger’s and “mild” and severe informally as descriptors.
Autistic activists have been critical of this distinction long before the “merger” of autism labels. No matter how well-meaning, they are frequently used against us- too high or low functioning for this or that service, based on shallow observations and assumptions, this person’s life is easy, this person’s life is hard, this person’s experiences are a valid representation of autism, this person’s aren’t. It isn’t flattering to be told “you’re doing well for someone with autism “. I want to be doing well *for me* relative to my abilities, skills, effort and what makes me happy- which might not fit other people’s ideas of success, but look at our society- I suppose Donald Trump is considered “successful”.
At the same time, I understand the need to communicate what sorts of skills and abilities an autistic person has. But in fact, moving away from functioning labels may actually be helpful in getting people to better understand autism and all the ways it can manifest. To be honest, I don’t think there is actually a good way of “replacing” functioning labels with something more accurate and less ableist. It’s a lot more qualitative- someone’s ability to do a particular task well often depends on what else is going on- sensory input, interactions with other people, disruptions or lack thereof in expected schedules and plans. Heck, this is the case for most human beings, autistic people are just more easily affected by these things.
The best shorthand descriptor is I (or my child/student etc.) need X type of support, accommodation etc. What I find difficult is that many people only seem to understand- or even legally allow, or portion out needed funding for an accommodation if it is necessary *all the time*, when many of them are for me pretty situational. “That’s not an accommodation- that’s just a preference”. Sometimes getting my preference can mean the difference between a job well done and a job done at the bare minimum. It’s not always this petty thing, like being allowed to decorate my cubicle or not.
I can go to work and do Task X at Pace Y, but then you throw in an office party, and I may need a break between that and doing regularly expected Task X in order to do it competently. I may get permission to skip the office party, but skipping every office party may result in some unforseen social consequence, because Everyone Was Told X Thing at the Party, um hello, duh? Policy change, competition announcement, co-worker wondering why I didn’t congratulate him/her on the birth of their new child. Or just the general perception that I am not a “team player”. Explicit communication please!
- Went to the May Day festival in Minneapolis, tabled for the Bisexual Organizing Project, had fun handing out Bi Pride/Ally stickers. Entertained myself by talking with the MRA (men’s rights activists) in the booth next to us. (Hey, even if I disagree with them, there wasn’t anything in their agenda that was anti-bi or anti-GLBTQ) I think I mostly confused them!
- Have started a NeuroQueer Facebook group for the Upper Midwest– If you are not on Facebook but want to be connected, please e-mail me at caelesti AT gmail dot com. We’ll be planning workshops for next year’s BECAUSE and hopefully other GLBTQ and disability conferences and events.
- There is also now a NeuroQueer book club, so people from any location can join, and we’ll be reading things that are either out of print/copyright or Creative Commons, so screen-reader accessible docs will be posted on the group. The reading for May is This Bridge Called My Back: Writings by Radical Women of Color Finish date May 26th. Oh! Upon a search apparently this is now back in print just this April! I’ll let them know and this may change our reading plans…
- Going to the Northern Dawn Covenant of the Goddess Beltaine ritual on the 9th.
- Scheduled my driver’s test for the 12th! Wish me luck!
- There is an ADF Upper Midwest retreat in June, which I need to register for- I managed to convince Dan to come along!
At this point there have been enough books written and movies made with autistic characters (fictional & nonfictional) that I think it’s pretty reasonable to hope for more representation of diversity. I saw a link about Autism in Love, an MTV documentary about autistics in relationships, and mentioned that gee, I hope not everyone in this is white and (assumed) heterosexual. I actually didn’t mention gender, because there are plenty of autistic women who have written books and appeared in some movies (even if played by other people). But apparently I burst the bubble for people who are still in “I’m grateful for any crumb of representation, no matter how narrowly done” mode.
CW for “I’m not racist/homophobic but…style ‘splaining…
Comment from someone named Tempest (leaving off last name because I’m not a fiery Social Justice doxxing ninja
“Well, gee, if the majority of people are white and heterosexual (which doesn’t matter because love can also come from a parent or sibling, too bad you feel the need to complain and think that love is only something sexual), and it helps them relate, why would it show something they CAN NOT relate to? I for one have trouble understanding when people of other races speak, I even have trouble understanding when southerners speak because of the accents they have. This is like saying that you’re going to go complain that a nail polish store isn’t advertising to men. Well, when the majority and most relevant customers are females, then why would they need to advertise to men? Same here. Sticking to the things people can understand is the best option, it helps the most people understand. But of course life is all about you and what you think, so go make your own and confuse a variety of people. I’m sure it won’t help as much as you want it to”
My reply– It’s about romantic relationships- not love in general and yes I understand that doesn’t always include sexual activity. (Heck the main reason I’m aware of the asexual community is their heavy intersection with autistic activism!) I haven’t seen the movie, so to be fair I can’t criticize it one way or the other- my comment is mostly in relation to depictions of autism that already exist. Interesting how people of color are always expected to relate to white characters-the global minority. By your argument we also shouldn’t have movies about autistic people because the poor neurotypicals wouldn’t be able to relate. There is actually research to suggest that there is a higher number of autistics who identify as something other than heterosexual- I think that may be partly because we are more honest and less self-conscious in our responses to surveys! Not every person of color speaks with a heavy accent. Frequently I can’t understand people regardless of ethnicity, because of being in places with lots of background noise. (Insisting that stores & restaurants stop playing music, or lower high ceilings would be totally oppressing the neurotypical majority, of course.) For now leaving aside all the men/boys, and genderqueer/nonbinary folks who enjoy painting their nails…can save that for another day..
Then I went to her FB page…this is just an excerpt…
“People think that documentaries shouldn’t show the general audience. Showing a flaming homosexual African/Asian female autistic person with a thick and heavy southern accent wouldn’t portray the same message as a heterosexual (or just not mentioning sexuality at all because it doesn’t fucking matter) white male autistic person with no accent. Get over your inequality issues, it’s about the audience to which you are speaking THE WHOLE AUDIENCE, NOT SOME SELECT GROUPS. If people see the stereotypes of certain things, it actually helps them understand better because they aren’t distracted from the confliction of their emotions. Every single person can watch the latter example, but only non-racist, accent-understanding, non-sexist, pro-LGBT viewers can watch the first example without feeling any anger or strong emotions. If the world revolved around those kind of people, then that would create an even stronger barrier between the two groups, and would most likely cause hate out of ignorance. If only those groups get to understand the meaning of a documentary because the other group couldn’t watch it, then how is that helping anyone?”
Now, I grok that more white males are diagnosed with autism, but I believe that is due to systemic and cultural biases. Women (of all races) African-American and Latino adults & children who are diagnosed with autism frequently are diagnosed later and after seeing more doctors and going thru more inaccurate labels. Often when they seek a diagnosis of autism based on their self-knowledge and research, they meet with resistance. White males may have to go thru more than one doctor as well, but they don’t get as much resistance to the idea that they could possibly be autistic. So which people and what audience can’t possibly understand that more racial diversity in autism could possibly exist, regardless of whether mostly white psych doctors and special ed teachers recognize it? The only legit real audience that matters, is middle class white people who can’t possibly be bothered with anything outside of their comfort zone.
Coming out as bisexual was for me, a radical act. Not just because many people still don’t acknowledge bisexuality exists. But because I’m autistic, and growing up, the idea that autistic people could grow up and have romantic and sexual feelings at all wasn’t depicted anywhere. We were either perpetual children who couldn’t give consent, or we were nonsexual like Temple Grandin, whose dating advice in her book “Thinking in Pictures” was based on zero dating experience whatsoever. I don’t expect all of us to be interested in, or even capable of romantic and sexual relationships, but I don’t see why she wrote about it all. It’s like the people I know who went directly on disability benefits without looking for work giving employment advice. OK, I’m not judging you for that, goodness knows the rest of society already does enough, but no, I’m not taking advice from you about this! Whenever people with developmental disabilities are depicted in relationships, it’s typically in a way that doesn’t threaten the public’s idea of us as sweet, innocent, overgrown children. Heterosexual relationships are adorable non-sexual puppy love for DD people. That DD individuals are sometimes denied the right to marry and live with each other, engage in sexual activity in unsafe situations due to their lack of privacy and independence and are highly subjected to every type of abuse, from both parents, caregivers and intimate partners- all of these facts get in the way of a sweet innocent story. The parents are always kind and understanding. The teachers and doctors always get the labels, treatments, and therapies and teaching techniques right, maybe sometimes with a little nudging or a lawsuit here and there from the parents, but ultimately they know best. And DD and autistic people are all magically taken care of by their wealthy immortal parents, or the government, and Regular People don’t have to do anything inconvenient, like hire them for jobs, and rent rooms to them, and make accommodations. Or put up with group homes or social services existing anywhere in their neighborhoods.
The neurodiversity panel at BECAUSE went pretty well. I was a little nervous at first, as it had been a while since I’d done a public speaking gig- and this was also the first time I’d put together a panel. We had 3 people, me, Stacy and Mira. After going to other conferences that had panels with as many as seven people, leaving almost no time for discussion and questions from the audience. We got together and did some planning before the event, and I wrote up an outline and questions. We did mini-introductions to ourselves, then I asked attendees to introduce themselves and share what brought them to this session. Part of the reason for that is we could adjust our presentation depending on the knowledge base and interests of the attendees.
Then I went over some definitions of neurodiversity, neurodivergence, concepts of the disability rights movement such as the medical model vs. the social model, and a little history explaining that neurodiversity had been coined as a term by the online autistic teen/adult activist community.
Then we each went thru the questions and discussion our experiences growing up neurodivergent, and how our gender and sexual identities developed and interrelated.
Then we opened it up to questions/discussion from the attendees. Wow! I feel like we had lit a spark and watched it spread across the room! I could tell that there were way more questions that people wanted to ask, some that we couldn’t answer! I collected contact information from interested parties, so hopefully we can get together locally, share information with folks from further afield, and get ideas/input from folks about planning another workshop panel- at BECAUSE next year and other settings.
I am looking thru the evaluations and also had a longer discussion with one of the attendees, so I’ll address some of the comments that were made. BTW- I had 2 handouts- a basic list of Neurodiversity definitions, another of Neurodivergent/GLBT resources. I didn’t know how many people would come so I made 15 copies of each. Some people came in late so they may have not gotten them. One person was sitting on the floor, so likely stuff didn’t get handed to him. I’ll be sending out more resources via e-mail. Most of the resources on this is online, so listing a bunch of long urls does not really work well on a paper handout!
Favorite part of the workshop “The discussion of the need for questioning ones’ caretaker or therapists.”
I could tell that was very revolutionary for some folks! Yes, we talked about professionals who were very helpful, and ones who *weren’t* very helpful! You can indeed fire your psychiatrist! (Though that might depend on how much control you have over your medical care but that’s another discussion!)
Fave part of workshop: Learning about neurodiversity.
This workshop could be improved by: I would like to learn more about info specific to neurodiversity.
Fave part of workshop: Hearing stories of the presenters.
Fave part of workshop: I liked learning about everyone’s unique experiences, esp. Mira’s because I know her already and see her almost everyday
Fave part of workshop: Audience participation
This workshop could be improved by: Put a medical or therapy trained person on panel
Additional comments: Too many personal comments in negative viewpoint
Fave part of workshop: Talking about gender/sexuality/neurodiversity
This workshop could be improved by: More time 🙂
Fave part of workshop: Personal story sharing Add’l comments- Thank you so much!
Fave part of workshop: Stories
This workshop could be improved by: Scientific info in relationship to personal info anecdotes
Fave part of workshop: I learned about myself
Add’l comments: “Turns out, the presenters did not focus on a wide spectrum of neurodiversity, instead on personal experiences. I did like what they were saying but WOW really not the workshop described in the book.”
(Here’s the description of workshop: Mariah will introduce the concept of neurodiversity- the idea that various mental health conditions, developmental and learning disabilities, learning styles, talents and giftedness are part of human neurological diversity, and a brief introduction to concepts in disability rights. Each of us will then share our own experiences with sexual and gender identity development and how that interrelates with our experiences with the education and health care systems, and society more broadly. We invite participation from attendees in sharing their experiences with neurodiversity and bisexuality.
Another piece of feedback I got (verbally) was that based on listening to Stacy & Mira’s experiences, there was some confusion about being neurodivergent vs. being trans. Short answer: Having a trans identity DOES NOT mean automatically that person is neurodivergent. Long answer: BUT, there is overlap and it’s complicated! Stay tuned for another post (I will link to this one)
Some people wanted more time explaining neurodiversity and various examples.
Other people said they enjoyed hearing personal stories. Some liked both.
Re: suggestion of medical/psychological folks on panel, more scientific info
I wanted to center the voices of neurodivergent people, rather than “experts” on psychology et al. since we usually hear those voices the most, they get prestige and profit off of their expertise, whereas “patients/consumers” get stigma and often are not listened to by the public.
That said, I *do* think a panel with health/education/social work professionals would be awesome, that is a good idea for next year.
I also probably should have added the caveat that I am a political science major, and I am viewing neurodiversity primarily as a socio-political movement. I did discuss that neurodiversity has a neuro-biological basis, but I did not have a bunch of data backing that up. I do want to make sure workshops are accessible to laypeople, but I think we can be more science-y while still being intelligible!
Negative comments- well I don’t know which comments that referred to, but likely there was some frustration expressed by panelists (and attendees) towards the medical-industrial and educational establishments. I tried to maintain an overall positive tone, since we are bringing our experiences into the open and neurodivergent people have more opportunities for activism and public education than ever before. But we are going to be speaking out against oppressive people and power structures, so yes that is going to be somewhat negative. However, it would be the same case in any of the other intersectional workshops.
Other feedback I got that is more relevant to the organizers of the conference as a whole- it was too hot, and we needed more time. All the workshop sessions were 1 hour and 15 minutes, which is an amount of time that works better if people already know more about the topic. I think I was trying to do too many things in one session, partly to compensate for years of neurodiversity not being a topic!
Often when I tell people I am looking for work, and they know I have disabilities, they will suggest that I try Vocational Rehabilitation. I have done that twice. I don’t think I am going to go thru with it again, though perhaps it might be more useful as more money is now going to be spent on Voc Rehab rather than on sheltered workshops. (This article is not entirely forthcoming, but comments on that later…)
The first time I applied for V.R. was in 2009, after I had interned for the Al Franken campaign in 2007-2008, and my next gig wasn’t until next November as a holiday temp worker at Jo-Ann Fabric.
Some things I wonder about Voc Rehab are: Do they ever talk to experts on the labor market? Or rather the labor market as it really is (as in not the stats that say “X number of jobs were created last year in industry Y” but it doesn’t mention that many of them were part-time jobs that don’t provide benefits. The Social Security people do, as they had a labor/vocational expert testify that I was capable of being a hotel maid, package handler etc. Wow, guys- thanks for the vote of confidence, I had no idea I was able to do such amazing things! *sarcasm* (Applying for SSDI was NOT my idea, by the way) I’m pretty sure the S.S.A. doesn’t talk to state V.R. people because at one time, my counselor told me that she “wasn’t sure I was capable of holding down a job”. At that point, I had been fired *once* and had held various unpaid internships and temporary jobs. But I had experience doing stuff, even if it was kinda random. Like no other 20-something year-old ever! (Sarcasm) I am not sure what this lady was expecting that would make me more employable- she was a VR counselor after all, didn’t she have tons of people with no work experience? Or who had been fired from multiple jobs? Or criminal records? Or simply guilty of the “crime” of being “too old”?
Anyway, the way it works is, you apply and submit various documentation that proves your disabilit(ies) Then you meet with a V.R. counselor and they interview and help you work on an employment plan. This can include evaluations of your skills, classes/workshops on interviewing, resume-writing, or if some miracle you can prove that you *really* need it for your super-specific employment plan, you might even get them to pay for training. This last one is highly unlikely if you are college-educated like me. In the realm of V.R., I was supposed to be an “easy” case, with my education and comparatively mild disabilities- though how “mild” they are doesn’t really matter, if you are competing with a zillion non-disabled people with better resumes and better social skills. I wanted to work in the non-profit field, in some type of entry-level job. I applied for lots of clerical positions. In retrospect I realize that clerical jobs are not really a good fit for me, but hindsight is 20/20. The V.R. person will often refer you to another person who works for an outside organization (a “vendor”) to help you with your actual job search, because the V.R. person is just there to supervise the case in general, and they have a zillion other cases. The first time I tried V.R. they referred me to an organized called HIRED. The lady who worked with me was very nice, though her expectations that I’d be able to easily find a job proved rather unrealistic. I also feel like people who work in nonprofits themselves are more easily impressed by a resume filled with volunteer work. People who do actual hiring don’t seem to be. In the end I had to leave the program, because I was dealing with health & family issues.
The second time I tried V.R. was in 2012. This time I applied because I had learned of an organization called AutismWorks, that as you can guess by the name specifically works with adults on the autism spectrum. What a relief! I would not have to waste a bunch of time explaining my version of autism. I was already working part-time for Erik’s Ranch, but was still considered eligible. What was odd is that I was later kicked off both V.R. and Medical Assistance after I picked up a *temporary* job that was *up to* 15 hours a week, and was estimated to last a month or two. (November-December) But apparently that made me SOOO wealthy and successful that I didn’t their help anymore. *sarcasm* This job didn’t lead to anything else, it was for a very small company and they just needed help on one project. In retrospect I could’ve challenged both of these. But I have a hard time dealing with bureaucracy just getting the paperwork done right and turned in on time. And it was the worst time of year for my stress & depression- December. Merry Fecking Christmas! But yeah- word to the wise, even if it’s hard & stressful, if they kick you of Voc Rehab for a temporary gig, challenge it. Get a letter from the employer saying that it is temporary, what it pays etc. If the employer has told you that this position is unlikely to lead to another permanent one, and he/she is not actively referring you to other clients or something, include that in said letter. Documentation is always your friend, when it comes to disability bureaucracy.
Anyway back to the actual process with Autism Works- they may have changed how they work since then, as they’ve grown and expanded, but this is how I did it then. They did various evaluations including an adult autism quotient (exact name I’m unsure of..) We did an interesting exercise with a social worker who specializes in “community based social work” in other words she does it from the perspective of how the person relates to their community, not just as an isolated individual which I thought was an awesome idea! Basically I went around with her and Greg my AW counselor and showed them around the Augsburg campus and Dinkytown and talked about my experiences and what stuff was important to me and why.
I thought about working with kids with disabilities, and applied for a bunch of aide positions at various schools. I did get a couple interviews- the one I remember seemed out of my league when they asked me about my “pedagogical philosophy” or something. I actually *know what that means* but I..don’t really have one. On paper this are pretty entry level positions but in reality with how teaching jobs are constantly being cut, I have to compete with actual trained teachers.
I did lots of informational interviews with nonprofit people I knew. It’s true that info interviews are a good way to get experience interviewing in a less stressful setting- because you are asking the person questions, and so you don’t have to prove yourself and all that. Greg was thinking that what works well for people on the spectrum is for someone in a company to recognize your abilities and create a position specifically for you. (That sounds rather pipe-dreamy to me!) Info interviews, networking to more people to interview, and yah you’re supposed to follow up with them, and maybe they’ll “keep you in mind” when something opens up and such. I also haven’t seen much of people moving up within the nonprofit realm, I mostly see people who worked in corporate and then “fell into” it, or they ran into their old college roommate blah blah. I talked to various former co-workers at my campaigns and they seemed to have no actual advice for me- just “volunteer forever” and “keep doing what you’re doing” which is…what? If I did a lousy job, or hell they just plain don’t remember me much and don’t really care, and don’t want to help me find work, then just go out and say it. Stop pretending. Otherwise it’s just as much of a charade as any other job interview.
So anyway, I’ve gotten to the point where I think I need to create some sort of mini-Conspiracy to Employ Semi-Awkward People with Goofy Brains…it can consist of people with said brains (whether officially pronounced by a shrinky-dink or not) who are either working, looking for work, run a business, as well as people with other disabilities or no disability who think employing people with interesting minds sounds like a cool idea. People who I’ve identified as Giving a Crap, not just random people I know who just pretend to Give a Crap. I want to talk to people who think I’m a cool person who’s capable of doing cool stuff, and aren’t all uptight about whether I have this perfect resume with no gaps or a cheerleader personality. (well maybe cool isn’t the right word…but something!) Anyone who has an idea for a better name, feel free to suggest!
The stuff at the top of my priority list currently is:
1) Getting ready for the BECAUSE Conference the weekend after next- trying to meet with the 2 other presenters to prep for the Neurodiversity/Bisexuality workshop we are doing. I can’t remember if I’ve discussed that here before. Well I now I have!
2) Cleaning up this house (because it needs it, and also I am trying to find a renter for the upstairs room) I am sick of finding roommates thru the usual channels (Craigslist & sign on the street) after many bad experiences from both. We will this time for sure do criminal background checks. Since it is now me, Dan, and Dan’s brother living together it would be nice if we could get someone like-minded to have a more family-like environment.
3) Finding cleaning/household chore gigs, and networking with other disabled folks re: employment. I am starting out doing cleaning gigs for people I know, live in the neighborhood etc. Advertising to the general public on Care.com & such may not work as well yet, because those places assume you will have lots of experience as a “professional” (for Hestia’s sake, it’s cleaning, not accounting!) have a car and will be carting around your own cleaning materials. I do want to get my license, actually owning a car will necessarily have to come later. I may just do this temporarily, I just am really sick of the usual job-hunting routine and just want to frickin’ start earning money.
Am doing a few things to network with other disabled folks. My friend/neighbor Claire (who I also clean for) connected me with Gwyn, a lady who has a brain injury who is looking for work. She said we seemed to have a lot in common. We’re planning on getting together next Thursday before the conference. It turns out she lives in a western suburb, so we’ll meet somewhere in Minneapolis.
B) Spectrum Connections-
Among my many meetups I belong to is one for teens/young adults on the autism spectrum & their families. They have social events throughout the metro (many of which I can’t get to!) but there is one coming up this Saturday in St Paul that I’m planning on going to.
There is a chapter of ADAPT (disability rights group) that meets monthly at a the Rondo Community Library close by in St Paul. I went to one of their meetings several months ago. They are doing good work, supporting legislation for increasing hours for state-funded PCAs, increasing pay for PCAs etc. Found out about this because one of the leaders is also in Take Action. Very cool, however I realized I mostly need to focus on my employment and some social support from other disabled peeps- in person not just online!
D) Autism Society
I have in the past attended several Autistic Adult support groups that meet monthly. The Autism Society of MN’s office is close by, I can bike over there. They have a general support group which attracts many people from all across the metro. Even when they divide up into smaller groups in different rooms that focus on specific topics it still feels too crowded for the office. I like the Autistic women’s support group better, I think mostly because it is smaller and seems less whiny!
The Neurodiversity group which meets at a different location in St Paul (which I always have trouble finding!) coincides with Bi Salon (2nd Thursday of the month)
E) Autism Conference- the Autism Society of MN’s conference is later this month (after BECAUSE) I am probably not going. I have in the past attended & enjoyed it, right now I don’t feel like shelling out the money for it. Frankly it would feel like a bit of a let-down attending a conference run by non-autistic people after going to a bisexual conference run by bisexuals! Which we specifically planned to make affordable & accessible! I enjoy that feeling of empowerment. I don’t get that from the so-called “autism community”.