Autism Holiday Survival Guide

The Dominant Western Culture Winter Holiday Season (tm) which apparently now begins before Thanksgiving is a fun but hectic and difficult time for a lot of people, folks with autism included.
I remember last year, I enjoyed visiting my family out west but found it rather stressful with too many people in a small space and too much going on at once.

Here are some potential coping strategies for clashes between autistic-ness and holiday craziness

Disruption of Routine- For some of us, the biggest problem with holidays is that it's a disruption in routine, even worse when holiday traditions are disrupted. Mentally preparing for the change helps. On this day, X is going to happen. Visual calendars help.
This year, we are going to Aunt Thelma's instead of Grandma's house, OK? You remember Aunt Thelma, right? Don't worry, Grandma will be there too.

Sensory Overload
Shopping Malls = Autistic Hell
Large Holiday Events/Parades etc = Autistic Hell
I know, sometimes little Timmy needs to come along on shopping trips. So go to smaller stores. Order things online. Shop at a different time of year (yah, sure says the woman who often figures out presents at the last minute)  Get it? Lights for some are bothersome- I suspect the blinking lights in particular- for some people they can trigger seizures
Uncomfortable formal clothing- surely you can find something little Sally will wear that doesn't irritate her sensitive skin. Figure out what fabrics work best. Sometimes autistic kids will have The One True Outfit (it goes with the One True Food) that is often very casual and insist on wearing that. Introducing new clothes slowly might help them accept more variety (as with food, activities etc)

Gift-Giving
 I know several individuals on the spectrum who really get stressed about gift-giving- much of it because of the  social expectations surrounding it. Often we don't have much money and feel like we're supposed to spend more, or just aren't sure what's appropriate to spend- worrying that people may either think you're being cheap or showing off. Make them (not too perishable) food- one year we made salsa, in addition to of course cookies and such. It's fun to try something different that other people won't be giving them. Hmm. It's also pretty easy to make soap. Framed pictures of you & your family (esp. good if it includes them)

Give away or re-mix (fix up, re-paint etc) things you already have that you think someone will like. Remember, re-gifting is ok so long it's outside of the social circle it was given in. Unless it's the big ugly lamp Great-Aunt Thelma gave you that's in the middle of the living room  to make her happy. Wait til she goes senile.

 Talk to Your Relatives/Friends
Help your kith & kin understand you or your loved one before you/him/her runs crying out of the room for unknown reasons. Then hopefully they'll cooperate so that's less likely to happen.

 If you, dear reader have anything to add about what can make holidays more spectrum-friendly, please add in the comments.

Éadaí- Clothing

Léine (linna)- shirt

Bríste (brish-cha)- pants- britches

Bríste géine- jeans

Gúna- dress 

Sciorta- skirt

Cíochbheart (cyock-vart) - bra (cíoch- breast)

Fo-éadaí- underwear (fo- under)

Pitseámí (pit-sahm-ee)- pyjamas

Éadaí-fóillíochta- leisure wear (fóill- go easy) pron like “foal”

Riteoga (ree-tyoga) - tights, nylons

Oiriúinti- Accessories (Or-in-tee)

Carbhat (car-vat) - tie (cravat)

Crios- belt

Bróga- shoes

Spéaclaí/ Gloiní (speck-lee, glinna) glasses

Seodra (show-druh)- jewelry (seoid- jewel)

Bráisléad- bracelet

Múince- necklace

Fáinne (fon-ya) - ring

Fáinne cluaise (cloosha)- earrings (cluas- ears)

Cumhrán- perfume

Geimhradh (Gayv-ruh)Winter

Cóta-coat

Háta- hat

Scaif- scarf

Buataisí- boots

Geansaí (gahn-see)- sweater

Lámhainní (la-wahny)- gloves (lámh- hand)

Samhradh (Sow-rah) Summer

Bríste gearrógach (gyar-ro-gach) - shorts

Cualaith shnámha (coo-a-la shnav-a) - swimsuit

Gloiní gréine (glinny gray-nya) - sunglasses

Cuaráin (coo-a-rin) - sandals (sing. cuaran)

Gettin' your Irish up!

Among my many hobbies is study languages- I speak Spanish and since finishing college I've been trying to practice by attending conversation groups. I have also been studying Irish- I am fortunate to have Gaeltacht Minnesota, a local group that teaches it. The problem we've been having though, is that the website is like a blog, the earlier stuff disappears to the bottom. This is not to criticize, but rather than trying to get other people to change this, I decided to start putting things up myself.

I tried putting together a simple site on Weebly, but I already have enough blogs/social networks etc. and I can post pages here, or make a Google site.
I will post each item on the blog, then link to it on its own page.
Starting out it will mostly be vocab lists. Some of them are from classes, others I have put together myself.

The Never-ending Spectrum: A Mini Manifesto

It seems most human traits are spectra. For everything that seems to be a pair of opposites, there is someone who fits in the middle. There are right-handers, us lefties, and ambidextrous people, and some righties are more able to use their left-hand than others.  It's people in the middle that we often don't know what to do with. We either don't think they exist at all, or if they do, they don't fit into either box, but we try to force them to, or just exclude them altogether.

I think most parents of autistic children, if they took a good hard look in the mirror, would see their own autistic traits, and that of family members. The "autism spectrum" does not exist in isolation. It's a Never-ending Spectrum. Every autistic trait can be found in the rest of the population, it's just a matter of degree.  It's the strength of these traits, and how much they disadvantage the person in a particular social context. A label can be seen as a tool for getting services or treatment needed to adapt to the rest of society, live a fuller life  or to compensate for deficits. And in turn, if the greater society adapts to people with differing minds and bodies, it benefits from their talents and insights, and learn that the "humanity" is much broader and deeper than it once imagined.

The "autism spectrum" is really more of a cluster, a cross-section or giant Venn diagram of overlapping conditions and groups of characteristics. Practically every Aspie I've met, also was labeled AD/HD. Tourette's, OCD, Non-verbal Learning Disorder (may just be a different label for the same thing) and so forth. They are really just sets of traits that are seen together enough to constitute a pattern.
But it's all one pattern, really. It's all part of the Neurodiverse Web of Life.

Autism & Atheism: A Correlation?

This spring, an article came out with several studies showing a correlation between autism and atheism. My procrastinating self is finally getting around to responding.This connection does not at all surprise me. Most adults with autism I have met or interacted with online, (myself included) seem to be either skeptical or non-believing in God & religion, or have their own unique spiritual beliefs/practices.  Some of these psychologists are attributing the lack of belief to autistics' lack of  theory of mind or mentalizing- the ability to understand what others are thinking.  It was also stated that men as a group have a lower mentalizing ability compared to women. Maybe this is so, but I think it isn't so much that autistic people don't develop similar beliefs due to not intuiting others' thoughts, but because we care less about what other people think and believe.

The autistic mind is generally prone towards logic and free-thinking.
We also tend to be literal-minded, which can either result in rigid fundamentalism or questioning commonly held beliefs, traditions and customs. We also tend to edge away or outright refuse to do or say things we don't understand or agree with.
A neurotypical child, who is more easily socialized may sit quietly during a service that s/he finds dull and little meaning in, and recite a creed in a confirmation ceremony before they are really old enough to have formed beliefs for themselves. An autistic kid? Don't bet on it!

Faith and emotion might hold together an individual's religious belief system, but it's social conformity that holds together religion as a whole. This is not to insult religion- conformity isn't always a bad thing, we all must follow traffic laws to be safe for example. Nonetheless, organized religion with its positives and negatives depends on many people following leaders, rules and traditions that aren't always so logical.

I hope this data does not lead to further stigmatizing either autistics or atheists- seeing autistics' religious beliefs or lack thereof as a sign of their mental inferiority or thinking those poor misguided atheists must just be autistic.
But this does seem to reveal some sparks of autism in the lack of social tact practiced by prominent atheists like Richard Dawkins, Sam Harris and the late Christopher Hitchens.

Getting the Most Out of Working with a Learning Disability

Here's a great article in the Atlantic that my fiance just sent me.

Being accepted & accommodated in the work world is a lot more complex than in the school system. For one thing, the school system is one huge network of institutions, though policies vary from one district to another, there are still more commonalities.  Parents and educational/psychological professionals can advocate for students. But as an adult, a person with a learning disability (or any other type) must learn to advocate for themselves. The work they will be doing also varies a lot more than school work, so figuring out accommodations is also trickier.

The article mentions a fear that revealing a disability will result in loss of respect, and being viewed as unintelligent. That may be the case for some, but I've found that often once I explain my disabilities and learning style, people (whether in work or other social situations) are a lot more understanding. I sometimes come off as rather slow, spacey and socially awkward and have difficulty with some simple tasks- because I need to do them more slowly, or differently.
I've also had people tell me that I am more eloquent in writing than in speech. I tend to blurt things out without thinking, whereas with writing I slow down and am more careful. In retrospect, there have been times in the past I now realize that explaining ASD would have made me more successful. I prefer to disclose after being hired- not just due to concerns over discrimination or misjudgment, but also because I don't want it to become the focus of the interview.

 Overall it's an excellent article, but there was some language I didn't like- saying "afflicted with" or "suffers from" is offensive to me and many others with learning disabilities. I prefer to say things like "individuals who have difficulty with", "has or is labeled with" etc. I was also both disgusted and saddened by the ignorant comments people made at the bottom- about how LDs are just excuses and so forth. I encourage my readers to go to the site and make more positive comments. The posters may not listen but it will help others who come across the article to better understand. Please mention your connection to whichever label.

Autism Speaks + Walmart= Double Trouble

Well, I'm a little late in finding out about this, but it seems the Autism Speaks has teamed up with Walmart to sell autism-themed school supplies- 6% of proceeds go to Autism Speaks. Autism Speaks is probably the biggest autism organization in the U.S.- certainly they have the most money and publicity, and they get a lot of it from sensational media messages about the "Autism Epidemic" and panics over environmental causes of autism. There is a petition here asking Walmart to take these products off its shelves. I'm sure Walmart, like most people is unaware of the autism self-advocacy movement, and they just want to engage in a little social do-gooding.  Walmart has plenty of other questionable policies, but I think this one is still well meant. Still, it would behoove us to introduce to them the whole concept of self-advocacy and positive autistic identity.

I do have to make a side comment- the above post mentions that treatments for autism are not OK- but there is a difference between treating the negative traits of autism versus treating autism as a whole like a disease.
I understand we all want to emphasize the positive parts of Asperger's/autism but we also need to find ways of dealing with the negative aspects- sensory & emotional issues, social skills etc.

On this post on Disability and Me- Zach Lassiter asserts that they are using the money to support research for prenatal testing for autism to abort future autistic embryos/fetuses. Is that actually a stated goal on their website? It's a large website- I would need to poke around to see if this is actually the case. So let's be careful before we go making that accusation. I would also think many of their supporters, especially parents, would be disturbed by this.  As much as they regret that their children have autism, I bet most of them love their sons & daughters, and don't regret them being born. This country is also divided about 50/50 on the question of abortion, and I would guess these parents would be

I was also thinking about the puzzle piece symbol that many organizations in addition to Autism Speaks use. I remember seeing something about ASD self-advocates finding this offensive- the idea that autism is a puzzle. If the implication is that autism is a problem that needs to be solved then, yes that's offensive to me. But I see it more as that the autism spectrum is a fascinating cluster of conditions and characteristics that we are only just beginning to learn about.

I like to joke that it's because autistic people are often good at puzzles. I'm sorry, but every person I've met who really likes large jigsaw puzzles (1000+) seemed at least a little autistic.

Siblings Matter, Too

I was looking around the Twin Cities Arc website today and was noticing all the programming and other resources they had for siblings of individuals with disabilities.  All too often, brothers and sisters feel overlooked by their parents or others, stigmatized by their association with disability and isolated from others such siblings (as are people with disabilities)

Though I had heard of  "Sibshops" offered by the Autism Society, I hadn't realized that they have been going on for 30 years- my entire life!
It's strange, I used to not see myself as a sister of a brother with special needs- since they were similar to my own. I remember my dad exclaiming "Mariah, he's autistic!" when I grew impatient with my brother. Autistic people all have different  traits & issues we face, so sometimes when another autistic/Aspie's behavior differs from one's own it can be hard to understand.  My brother has some challenges that I do not, so does Dan's (my fiance's) younger brother. For example, I've had more problems with anxiety, and he has more trouble with taking the initiative (executive function).  Dan learned to read at 3 or so and was very verbal, but his brother had more difficulty learning to talk and read.
Plus little brothers are just annoying in general!

I have another friend who is on the spectrum, and also has Tourette's. She has struggled a lot getting through school and making her way into adulthood, but has a college degree, and has held a job and been married for years. Her older brother has the same labels but has never been able to do any of these things for long periods of time. His emotional problems are a lot more extreme.
Because of these factors I think Sibshops could certainly be of benefit to siblings that have disabilities themselves, particularly if they have milder conditions.

Book Review: Beyond Ramps

In Beyond Ramps, Marta Russell gives an excellent critique of disability policy & cultural attitudes in the American political & economic system. She shows how inadequate the Americans with Disabilities Act is in broadening opportunities and inclusion of people with disabilities in mainstream society. There is not enough of a push for businesses to hire people with disabilities, and there was too much compromise on not putting an "undue burden" on businesses to make their buildings accessible.

Russell also covers issues of bio-ethics, the history and current practices of eugenics & euthanasia. She gives some terrible examples of people who were put to death against their will, by people who thought they knew best. Though I do have to disagree with her on the Terry Schiavo case- doctors were almost all agreed that she was beyond help, not conscious at all, and really just artificially being kept alive. Really, it's a big example of why we all need to write living wills. There is a lot more awareness & encouragement of writing living wills by health care professionals now.

Russell also challenges us- what is the "perfect baby" anyway? Where do we draw the line as far as parents choosing what traits their unborn children have? Are we loosing important parts of the human condition or playing God by aborting these embryos or screening out "bad" genes?

How much is the pro-choice movement quietly supporting selective abortion as a parent's choice? (Though she does overall support a women's right to choose) Lots of disturbing things to consider, both on an individual and societal level.

Keep in mind, however that this book is now 14 years old- Clinton was president at the time, and so the statistics and policies are now quite different. I don't have all the information as to *how* they differ, but one thing I can say is that the tides have turned a lot regarding nursing homes vs. Personal Care Attendants. During the 2000's it became realized that PCAs were cheaper, and better for the people involved, and so there has been a strong shift in that direction, though funding for them is often not enough.
I also thought she was too harshly critical of nonprofits. I think non-profits and charities can be a good *supplement* to government aid, but they definitely cannot replace them, and I agree we can't just depend on people to donate to them.

I learned a lot from this book, and it often challenged my views, and deepened my understanding of disability rights issues. I hope it will for you too!

Epidemic? Gee, Thanks

For quite some time Autism Speaks and various other organizations have been using the phrase "Autism Epidemic" to describe the rise in autism diagnosis. I am really fed up with it. The term isn't even accurate:
Definition from Wiktionary: epidemic
1 A widespread disease that affects many individuals in a population.
(epidemiology)
2 An occurrence of a disease or disorder in a population at a frequency higher than that expected in a given time period.
Perhaps the second definition is closer- but it implies that it is a contagious disease- talk about insulting!
To them, I am part of a plague, a expensive and emotional burden on my family and society. I have no gifts or talents to offer the world, and my birth should never have happened.

Here is a quote from their website:
More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined

Autism costs the nation $137 billion per year

Autism receives less than 5% of the research funding of many less prevalent childhood diseases

Autism is the fastest-growing serious developmental disability in the U.S.

Autism Speaks will do anything for sensationalist media attention, and they have raised millions of dollars through this approach. It never occurs to them (or perhaps they just don't care) that people with autism/autistics have their own voices and opinions. They speak for parents and professionals, not for us. Most other disability organizations are at least in part run by people with those disabilities. The autism community developed differently as early on, most individuals labeled autistic were children with more difficulty with communication. Twenty years ago, when I was labeled, Asperger's Syndrome was considered quite rare. Now it is far more common, even more than classic Kanner's autism. And many of us are adults. So Autism Speaks and other organizations need to catch up with this reality.

Another problem I have with them is that they focus almost exclusively on young children. While early identification and intervention are certainly important, what about improving the lives of older people with autism? Those children won't have much of a future if we don't build better opportunities for employment, education beyond K-12, housing, and social and in-home supports (if needed) They focus on research- and I wonder what kind of research? To learn how to better help people with autism with their difficulties (sensory, social etc) It seems mostly a search for causes of autism. I am worried this will result in selective abortion and eugenics.
More on that in another post.

Please write to Autism Speaks and other organizations that use this sort of language, and ask them to stop. What will young people with autism (or older people just diagnosed) think when they hear these messages? Don't we want them to feel good about themselves and who they are? Telling them they are inferior and diseased won't do that.

Adults with Autism & Employment Study

A study on employment and adults with autism just came out in May. This is specifically about young adults, though I have some thoughts on the subject more broadly.

What I found especially interesting was that adults with other developmental disabilities (e.g. some degree of mental retardation) have a higher rate of employment.  That made some sense to me, as there does seem to be more services set up for people with Down's Syndrome and other such conditions. Also society as a whole may better understand these disabilities. Autism is more difficult to wrap one's head around.

Since I have a degree in political science, I've been trained to be skeptical of statistics. How did they get these numbers? What methods did they use?
First off, the unemployment rate in general only includes people applying for unemployment benefits or report looking for work.  People who have given up or taken a major break in job searching aren't included- that would describe many people with disabilities.

Other factors: many adults on the spectrum especially past 35 or so, are unlabeled. In fact, probably most of them. Some of them fall under the radar, as they may have better adjusted to mainstream society, or maybe dropped out of high school, or are homeless or move frequently due to poverty.

Tipping Customs

I have many talents, but math is not one of them, far from it. So, I have difficulty figuring out a 15% tip when I go to restaurants. Dan (my fiancé) taught me a trick of finding 10%, (moving the decimal point a digit) then halving that and adding the 5%. I'm not sure if 20% would be any easier. Aside from that, I find this method of tipping illogical, and rather unjust. For one thing, the quality of service has nothing to do with how much you spend on food and drinks, in fact it can be the opposite.


A couple times, I and/or Dan have gone to restaurants where the waitperson tried to push a product we didn't want. On one occasion, at an Applebee's, a waiter obnoxiously promoted a new appletini every time he came by. (Really are you sure? It's really good!) And it was lunch! Needless to say, he didn't get a very good tip. Tipping is the service industry's equivalent of commissions, but it makes no sense since they are not supposed to be salespeople. I'm fine with it, and these folks need the money, but I've decided a flat amount like $2-5 seems about right, depending on the class of restaurant and the quality of service, including them putting up with my indecisiveness. 


Give more at cheaper restaurants, as they need the money the most. And at fancier places, I suspect the valet parking guy needs it more. It also seems arbitrary and ambiguous who you are supposed to tip. It may vary from place to place. Hairdressers, cab drivers, sometimes hotel maids. Basically, tip well any service-person who makes a good effort, is helpful, is patient with inconvenience and probably gets a low wage. And, if the person treating you stiffs them, and you think they deserve more, sneak some dead presidents onto the table. Also, I do not tip people who only serve me at the counter, unless they have to put up with me being difficult, or go out of their way for a special request (hold x, y and replace z)  

Intro

Bienvenido, I'm Mariah, 30 and live in St. Paul, Minnesota after living many places around the country.  I have written other blogs elsewhere, but decided to start another one that I could more comfortably share with family members and work colleagues, as some of my opinions are rather...controversial.
Since I see the personal as political, I will touch on politics but avoid the 4 Gs: God, gays, guns and gynecology. But I have plenty of other interests like languages, books, music and movies, and various cultures.

So, here goes!