Posts tagged ‘autism’

Alternatives to Autism Functioning Labels

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!

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February 25, 2016 at 12:31 am Leave a comment

Disability News Round-Up

I’ve been posting lots of disability-related news on my Facebook, time to share them here!

Neurotribes Examines the History & Myths of the Autism Spectrum– Neurotribes: The Legacy of Autism & the Future of Neurodiversity is a new book by Steve Silberman, a non-autistic man who did wild things that many autism organizations were seemingly not capable of doing (sarcasm) – actually interviewing and listening to people with autism and taking us seriously! He suggests that we channel money into actually helping autistic people rather than researching genes & environmental causes to prevent us from existing. Thank you, Steve! (just don’t read the comments- anti-vaxxers)

The Disability Community’s Bechdel Test– Cast disabled actors whenever possible and tell better stories (Note: comparison to the “Bechdel test” is kind of a misnomer) Still, read it anyway.

Dear Disabled Person, We’re Sorry but You’re a Real Inconvenience, Signed (Insert Conference Name Here) A post from last year, but still just as relevant. I’ve often noticed people running events think of accessibility in various forms as an extra, an add-on, like a luxury. When it determines whether someone can come to the event at all, or fully participate, clearly it’s not a luxury! It’s a basic necessity. Though I imagine there are probably ways we can always improve, I think it made a big difference in planning BECAUSE- Bisexual Empowerment Conference, A Uniting Supportive Experience last year that we had multiple people with different types of disabilities & medical conditions both on the planning committee and on the board- Deaf, learning disabled, psychiatric/mental ill folks, chronically ill folks, folks with various type of mobility needs, food allergies etc.

Right to Independent Living for Right to Suicide- Sisters of Frida, disabled women’s group in Britain

I *am* in support of euthanasia as an option in extreme circumstances- such as being towards the end of a terminal illness. However with current situations, both in Britain, the U.S., Canada and pretty much everywhere we need to focus on creating a society in which *life is worth living* for everyone. I think we also need to build more intentional, inter-generational communities- biological nuclear families are only one option. Putting supports in place for independent living is important, but *interdependent living* is I think even more key.

September 10, 2015 at 2:39 am 3 comments

Which Witch-y Niche Shall I Pitch?

So this isn’t a for sure thing yet, but Anne Newkirk Niven of Witches & Pagans has asked me to blog for their website. I just need to come up with a main topic/theme to write about. She was up front with me that it’s not a paid gig, they just ask for at minimum a monthly post- but I will get a subscription to the magazine, which is probably more than I would get writing for Patheos- though I could certainly write for both. I started a Patraeon account, but haven’t made the “pitch” video for it yet,  as I could use some tech help with it (I am sure with my geeky social network, I can find *someone* to help with that! I’d like to get that set up if/when my column on W & P launches. I am also looking at how other bloggers use Patraeon to get an idea of how to use it. And in addition to blogging I do other types of unpaid work in the community (like serving on the Bisexual Organizing Project board) so this is way for people who appreciate my work to give back.

So here’s my idea that I pitched to Anne in an e-mail-

“I’m still thinking of a title and description, but I’m thinking of doing a blog that is about neurodiversity and how it relates to Paganism- I’ll talk about how to adapt practices to different learning styles, be inclusive of people with different kinds of “mental wiring” (AD/HD, autism, dyslexia etc) even how particular mythic & historic roles and archetypes- like witch, seer, trickster/fool, bard can be incorporated into a personal path. I follow a Druid/Heathen path, but I reach a broad audience with my blog, and get feedback from people of many different backgrounds, so I can create content that will be accessible to the diverse needs of Witches & Pagans.”

Other ideas: Paganism in interfaith/multicultural contexts, queer spirituality, the Approaching Paganism series..

I haven’t heard back from her yet, but I just was communicating with her yesterday, and she’s understandably a busy lady. (There are only 3 staff working for BBI Media!) So in the meantime my dear readers let me know if you have any suggestions.

July 2, 2015 at 6:10 pm 1 comment

RCAD 17, 18: Discrimination, Stigma, Preferential Treatment

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Redefine Disability Awareness Challenge by Rose Fischer

My non-linear brain prefers to answer these in a random “what appeals to me today” order, some repetition may ensue.

17) Have you experienced discrimination because of disabilities? Discrimination comes in many forms, from refusal to employ or accommodate a person with a disability to treating that person with disrespect because of it

Possibly, but it’s hard to tell for sure (let alone legally prove!) since my disabilities are hidden/invisible. I do tend to strategically reveal them to employers *after* they have hired me, (often after scoping things out, and possibly allying with a co-worker who has a learning disability, or a kid with one) but before some social, emotional or sensory issues pop up that might endanger my job if I don’t develop a strategy to cope with them. I often figure out these strategies and coping mechanisms on my own, without consulting with anyone, but my ability to do so may depend on the structure and expectations of the job, and how flexible and open-minded the supervisor and co-workers are willing to be.  I’ve felt rather annoyed with the conventional disability services complex because the professional helpers seem to have this naive faith that the ADA- Americans with Disabilities Act will always magically protect you from discrimination, and you should just go ahead and reveal your disabilities.  I think this is due to shortcomings and assumptions from how they are trained, and professionals who actually are familiar with Asperger’s and ADHD are far more helpful. With more generic disability professionals, I end up spending as much- or more time educating them about my disabilities than actually getting relevant help and suggestions from them.

18) Have you experienced preferential treatment because of disabilities? —By preferential treatment, I mean situations where you were treated better or differently from your peers even though there was no valid reason.

I’ve gotten the condescending kindergarten teacher voice from people- and being treated as if I were “slow” after people found out about my label(s) or picked up that I was a little “different” or “special”. I wouldn’t consider any of that preferential! Honestly, if there were more companies that practiced active recruiting of people with disabilities- and didn’t limit that definition to only certain conditions (as the federal government does) I think that would be fantastic. I know that doesn’t fit with the mainstream disability rights movement’s “we want to blend in and be treated like everyone else” agenda and raises the oh-so-scary specter of affirmative action that makes middle class white people run away screaming, but I don’t really care. Their strategies haven’t been working very well, its time we tried something else.

30 Days of Mental Illness Challenge by Marcy

14: Have you ever experienced stigma? 

Yes- mostly from people making cluelessly insensitive comments in front of me about autism and mental illness, often while not realizing I have either such experience. Sometimes I challenge them while staying “in the closet”, sometimes I come out if it feels safe and appropriate to do so. Often it’s a “Eeeww, I don’t want to be associated with Those Crazy People!”. Maybe this relates more to the pseudo-preferential treatment discussed above, but I’ve especially noticed this stigma when mentioning my past seizures/epilepsy. Sometimes with mere mortals, sometimes with doctors and other Experts ™  who should “know better”. I’ve gotten “back away slowly before she explodes!” style reactions, being treated like I’m a porcelain doll, need to be told what I’m capable of doing and how to take care of myself and “Oh, you poor dear, there but for the grace of God/the Universe go I” and other crap. This is very similar to a lot of the complaints I’ve heard my friends with more visually apparent physical disabilities talk about how they’ve been treated, and I’ve also witnessed some of that nonsense myself while around folks with physical disabilities.

June 25, 2015 at 11:21 pm 2 comments

RCAD: General Experience with Disability

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  1.  What is your experience with disability? — Do you have disabilities? Do you have loved ones who live with disabilities? Do you work with people who have disabilities? 5)What are some significant moments/events in your life that connect to disability? — For example, you can talk about hearing a diagnosis for the first time, meeting a role model, learning something important that helped form your understanding of disability, etc.

I discussed my various disabilities in the previous post, in this one I’ll focus on my broader disability awareness. When I was first told about Asperger’s Syndrome, I rejected the label- it sounded too negative. Even so, as a kid, I went to Camp Courageous of Iowa, with kids will all different types of disabilities. Even though, at the time I didn’t really identify as disabled and thought that the doctors were “lying”, I came to better understand and empathize with people with disabilities from that experience. After we moved to Minnesota, I and my brother both attended Camp Discovery or Camp Hand-in-Hand, both run by the Autism Society. Being around other kids with Asperger’s, I felt “normal” for once, and came to see it as a set of differences that are a disability in broader society. I reclaimed it as part of who I was, and made it my own, rather than a file that belonged to doctors and my parents.  These camps are held at sites owned by Courage Center in Golden Valley, and there are sessions for many types of disabilities, for both children and adults. Since there were several sessions for Deaf people, many of the staff are Deaf, and each cabin had a Deaf counselor. We learned some sign language as one of the camp activities, as well as informally, and I know one camper who took classes in ASL at St Paul College and was planning on getting certified to be an interpreter. I’m not sure if she has finished with this training. Anyway, I think the interaction between autistic and Deaf people is particularly interesting, since autistic people tend to have trouble reading and using body language, learning sign is a great way for us to learn body language and emotional expressions more systematically and explicitly, and it has potential as a form of communication for non-verbal autistics. Having adult autistics working at the camp- each cabin had one called a Mentor was also amazing, and I become a Mentor myself and worked as one for 7 sessions over the years.

I attended Augsburg College, which has great programs for students with both physical and learning disabilities. I will talk more about accommodations in a later post.  But anyway, in some respects college was like a grown-up version of going to the Courage camps- I had many friends with various types of disabilities, particularly in Queer & Straight in Unity and we helped each other when needed, and you didn’t feel like you constantly needed to explain yourself and your needs- a little here and there yes, but for the most part these differences were pretty well understood and accepted. All the roommates I had throughout college had Asperger’s or other learning disabilities, and one roommate used a wheelchair. Having him as a roommate definitely raised my awareness of accessibility issues, we’d go around, plan various social activities and realize “Oh, crap, Levi won’t be able to get in to that place!”

Questions from 30 Days of Mental Illness Awareness-

6: Do you have a family history of mental illness or mental health issues? (Caelesti’s note: I’m including anything that falls in the DSM-V, such as developmental & learning disabilities)

Ah, yeah you could say that! Especially on my mother’s side- I call the range of symptoms they have “the O’Leary spectrum”. My dad has Attention Deficit Disorder & depression (including Seasonal Affective Disorder) , and my mother has Obsessive Compulsive Disorder (OCD) and a mix of anxiety and depression (I’m not sure of specific labels) My brother is on the autism spectrum, also has ADD and depression. Several of my mother’s siblings and some of their children have various mixes of depression, anxiety, obsessive compulsive symptoms, AD/HD, and one person is bipolar & dyslexic. My mother’s fraternal twin sister is very calm and clear-headed in an odd contrast to the rest of her siblings!

June 19, 2015 at 8:42 pm 1 comment

RCAD 2, 3: Collecting Labels Like Pokemon

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Redefining Disability 

Question 2: If you have a medical diagnosis, do you see yourself as having a disability? Why or why not? If you don’t have one, how do you view the concept of disability or the people in your life who have them?

Depends on which one- I see the epilepsy as an impairment, as in its inherently disabling by its nature rather than due to social/political structures.

The most inherently disabling thing is probably the anxiety and depression, when I have those under control, and find the best ways of adapting things to suit my brain (autism/Asperger’s, ADHD, dyscalculia, possible giftedness) then they are more like differences and uneven social/emotional abilities, development and intelligences and a unique and intense way of experiencing the world. Whether I identify as a person with disabilities kind of depends on the social context.

3) What have your experiences been with medical treatment and/or therapy been like? Do you have positive, negative, or mixed feelings about your experiences?

I mostly talk about being autistic/Asperger’s Syndrome but the truth is I have a whole collection of medical/psychiatric labels. I collect them the way some people collect Pokemon cards! Except, they tend to be more expensive, and you don’t keep them in album and show them off to people! They are more like credit cards that I only reveal when I need a specific service, accommodation or treatment, that only my special cards will get me.

As a child it was noticed that I had emotional problems, and when my mother took me a doctor he said I had “fragile moods”. Not especially helpful! In the 1980’s autism was not very well-known, especially for children that were verbal and intelligent. Later on, after we moved to another state my brother and I were both given a bunch of tests and labeled with autism- “high functioning autism” in his case, Asperger’s Syndrome in mine. At the time these were both considered rare conditions. Throughout my life, I’ve experienced problems with depression and anxiety, which are somewhat related to autism and other learning disabilities- I am more easily stressed out by changes in my environment, schedules, sensory input, and interactions with people. Being worried about doing the right thing socially and figuring out how I will make it in the world leads me to have anxiety problems.  I can’t remember when I was diagnosed with major depression and generalized anxiety disorder, since I wasn’t really “in charge” of my care until I was an adult.

To be frank, especially when dealing with psychiatrists I’ve often felt very dehumanized. The problem of course is that if you describe such feelings to a mental health “expert” they will often dismiss it and attribute it to your depression or other issues. Yes, you can have depression to begin with, but persistently being viewed as a walking case file and list of symptoms is also pretty depressing!

One psychiatrist I had seemed to not understand the difference between Asperger’s and Obsessive Compulsive Disorder- they have overlapping symptoms, and some people have both, but they are still different things. So he kept medicating me for OCD all thru high school and thru part of college until I did some research and realized that the medication might actually be making my anxiety worse, so I tapered off of it.

Another psychiatrist I saw thought the mix of both depressive symptoms and hyperactivity meant I had Bipolar Type II (a “milder” form of Bipolar Disorder in which a person has shorter periods of depression and hypomania, rather than full-blown mania. I researched that, and found the description didn’t fit what I was experiencing.

I suspected instead that I had ADHD, and I saw a therapist who evaluated me for it, and it turns out I was right! They had only used one type of test for AD/HD when I was a kid, a Tova test and I barely “passed it” (or is it “flunking”?) but my father and brother were both diagnosed with ADD. It’s interesting, because most people I know my age were diagnosed with ADD or ADHD as kids, but didn’t get the autism/Asperger’s label until their teens or adulthood, because it was less well-known. I guess I just confuse the “experts”, now don’t I?

I have also struggled with math, telling time, a sense of rhythm and other issues which all fall under the term dyscalculia, a learning disability that no one has heard of, though it’s about as common as it’s more well-known cousin, dyslexia. It seems people consider being “bad at math” less noticeable than having trouble with reading, even though they both very important skills. I actually flunked PreAlgebra…in college- though I did fine after I had a tutor!

I also have epilepsy- grand mal seizures, which commonly overlaps with both autism and depression and other types of mental illness. Fortunately that is now under control with medication.

I like the therapist I have currently- she respects me as an individual with my own opinions/interests etc. without trying to box me in based on any labels I have, but she also recognizes my challenges and helps me learn to deal with them. I also see a psychiatric nurse rather than a psychiatrist, and while this may not work for everyone, I recommend this option if you’ve had trouble with psychiatrists. Nurses are trained to have a better rapport with people.

June 19, 2015 at 1:55 am 2 comments

Improving Online Mental Health Self-Help Culture

Online mental health self-help culture has its pros and cons-  most of these are also true of other medical conditions and disabilities- particularly ones that are less well-understood or acknowledged by mainstream health care professionals and institutions. These are some observations I’ve made after long-time participation in autistic adult & neurodiversity communities. Note that I am far more familiar with helping adults with autism & parents of kids with autism than say, people who have bipolar disorder or schizophrenia.

Pros:

* Spread of good information about mental health, self-help techniques, both mainstream & alternative mental health resources

*More access to information & support particularly for people in under-served populations- uninsured, low-income/working-class people, people of color, GLBTQ individuals, folks with disabilities in addition to mental health issues, people in countries or regions that have minimal or non-existent mental health care

*People finding community, sometimes pride in neurodivergent, mad, disabled and queer identities.

*More understanding for family, friends, community members and mental health professionals

*Advice on how to navigate healthcare/social service/education bureaucracies, and less conventional ways of accessing basic needs (barter, sharing, crowd-funding)

*Peer supported/confirmed self-diagnoses for people who might have a harder time accessing formal diagnosis. Sometimes a person later gets an official diagnosis, services and accommodations.

Cons:

*Spread of bad information on mental health, ineffective or inappropriate self-help techniques (either for everyone or for specific individuals) Framing either mainstream or alternative mental health structures/techniques as either 100% good or bad.

*Professionals & family members who are otherwise unaware of the broad range of mental health self-help communities may see more extreme factions and assume they are representative of the whole. But this is a problem with every subculture, internet or otherwise- especially if something is either unfamiliar or someone is already prejudiced against it, they will pick the most extreme version of it, and that’s the part that becomes most well known, even if it’s a small minority. (This is why respectability politics never works!) And if some part of the media gets involved, well St. Dymphna help us!

*False self-diagnoses that lead to a person to engage in self-help and self-medicating that harms them, spreads inaccurate information about a condition to others. (I’d add “uses self-diagnosis as an excuse- but those of us with official diagnoses are so frequently told that “we’re just using X as an excuse, it’s all in your head, not real, that didn’t exist in my day, blah blah” that quite frankly I doubt that many people specifically seek neurodivergent labels for themselves while knowing they are not accurate. Yes, sometimes there are hypochondriacs or maybe even trolls that try to infiltrate communities. But this is not something people seek out to be “cool”.

*Confusion by both participants and outsiders between  identities and subcultures perceived as unusual/eccentric- such as- otherkin, multiple systems, various alternative spiritual beliefs & practices, gender & sexual minorities that *do not* by themselves indicate a person having mental distress issues vs. assuming that if this person claims this identity they must necessarily be mentally ill, add extra stigma helping.

How to we increase positive results of our communities while reducing negative results?

*Self-care and knowing your limits- do what you need to do to take care of yourself, mentally, physically, emotionally and spiritually. If that means taking a break from these communities- both online and in-person support groups, fine!

*Figure out clear boundaries for what you are and aren’t willing to do to help others- a therapist can help with this.

*Get out and be social, hang out with people who are supportive but don’t have mental health/substance abuse issues themselves

*Get lay-level training about how to deal with mental health crisis- both for yourself and others from orgs like National Alliance for the Mentally Ill (NAMI) Note: I know some of my fellow activists don’t care for NAMI- I am just suggesting them as a baseline, you don’t necessarily have to agree with them on everything to learn from them.

*Suggest and redirect people towards groups that focus on resources in their area (I’ve often encountered pleas like “I’m about to become homeless/lose X type of benefits etc” from people without them telling us where in the United States they are, let alone where on the entire frickin’ planet!

*Encourage people to seek out in-person help in their local area, and not wait til things have gotten to an emergency level (or what they perceive as an emergency!)

*Recognize when/if you have a Savior/Martyr/Compulsive Parent Figure Who Must Help/Adopt all the Lost Puppies & Orphans type mentality. Helping people is a wonderful thing! It can also become an addictive and dysfunctional behavior!

*Learn about Minority Stress Theory, and particular issues facing various minority groups that can affect them while accessing mental health care. Learn about different cultural views of mental health

*Share information about how to get professional help, while being understanding of concerns people may have about doing so.

*Moderators of different communities/fora should talk to each other to share information about problematic individuals. Even if some of their behavior is related to their mental health or neurodivergence, that is not an excuse for breaking rules that are clearly stated, being disruptive, or harassing and bullying other people. Hence why, in these communities in particular to clear rules that all participants agree to, and steady & active moderation. Confidentiality is also a must.

May 30, 2015 at 3:05 am Leave a comment

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