Monday, December 31, 2012

2012 at Thinking Person's Guide to Autism

2012 was an eventful year at Thinking Person's Guide to Autism: Our book drew much acclaim, three new editors joined our team, we featured more than 30 profiles of Autistic kids and adults for April's Slice of Life series, we went to the International Meeting for Autism Research in Toronto, our Facebook community hit and surpassed 10,000 members while remaining a nexus for thoughtful autism news and conversation, and we were cited and our editors were interviewed frequently -- especially whenever autism made headlines.

We also continued to publish thought-provoking and educational essays and interviews on this site, and all enjoyed and learned from the ensuing discussions. The 15 TPGA posts (with excerpts) below were 2012's most popular -- meaning hotly debated and/or praised -- and give a sense of what we in the Thinking Person's Guide to Autism community had on our minds these past twelve months.

Thank you for reading and being part of the TPGA community. We wish you well, and hope you get to define your own happiness in the new year.

1) Dangerous Interventions: MMS and Autism 


Emily Willingham
"With the appearance of “chemical castration” or fatal chelation, one would think that we’ve already hit the nadir of experimental “curatives” for autism, but there’s yet another, lower point. Now we have a cadre of three people who seem to have determined that autism is The Next Big Thing for their “curative” of choice, a solution that is essentially industrial-strength bleach. This year’s AutismOne conference featured a presenter who told the audience that she has directed parents to use bleach in the bodies of autistic children.

"Before you read on, I have to warn you that what I describe here is child abuse and tantamount to torture of autistic children. It is harrowing and horrifying."

2) Why Autistic Students Need Autistic Role Models 

  

Karla Fisher, Cynthia Arnold, Tasia

"The message I want to get out is that for students like Nick to succeed, they need the following:
  1. To be matched with ASD role models or at least to be able to name three of them (they must know that people can and do succeed even when they are autistic). 
  2. Their programs should be evaluated by ASD adults.
"Karla and I [Cynthia Arnold] would like to get these types of programs rolling all over the United States. We know so many adults who can just walk though program buildings and tell you the simplest things that can be unintentionally hurtful to students."

3) Kate Winslet's Autism Awareness Project: The Golden Hat

Carol Greenburg, Shannon Des Roches Rosa, and Jennifer Byde Myers
"'...the Golden Hat Foundation doesn't just raise awareness about autism, but it's proof of what happens when determined moms band together to create change.' [co-founder] Margret talked about the terrible feeling she used to have, of not being able to help her own child; and how important it is for people to understand that non-speaking Autistic people can be capable, can contribute to society."

4) Autistic Grief Is Not Like Neurotypical Grief 

Karla Fisher
"Grieving and ASD Symptoms: The thing that probably helped me more than any other thing during my struggles was the realization that what was happening to me was sensory processing failure versus just going insane. Once I had this information, it became reasonably easy to understand what to do and I was able to focus on symptom management. You see, every brain only has so much space in which to process information, and if a very large part of that is consumed with emotions, it can easily result in failures of other areas"

5) Touch: Autism and Special Needs on Fox TV


Interview with Joanne Lara
"Fox TV's new Kiefer Sutherland series Touch premieres in two days, on Wednesday January 25th. We're intrigued, and watchful. The series revolves around a non-verbal child, Jake, who understands numerical patterns other people can't perceive -- and his father Martin's attempts to understand not only what Jake is trying to communicate, but Jake himself."

6) Scarred

Kate
"They say that what doesn’t kill you, makes you stronger. If so, we are forged of steel and iron. We can deal with whatever life throws at us, we are used to managing on our own, but dammit, it is so hard sometimes. It is so hard trying and pretending and figuring things out all the time. It takes years of effort to understand, logically if not emotionally, that we are not stupid, we are not invalid, we have just as much a right to be accepted and loved as anyone else."

7) A Culture of Abuse: Autism Care in France  

David Heurtevent
"Autistics are subject to invasive care and conditions favoring sexual abuse. The best example of abuse in France is Le Packing, a barbaric practice which consists of wrapping autistic children, naked or stripped to their underwear, in cold wet sheets (at 50°F, 10°C), like mummies. Some teams even put the sheets in the refrigerator before using them. (Read a detailed description and critique of Le Packing at Support the Wall.) Today, in 2012, this technique is still used in 300 establishments in France. Le packing has been used on children with autism for over thirty years despite having never been subjected to any evaluation other than a few adult case studies."

8) Autism, empathy, and violence: One of these things doesn't belong here


Emily Willingham
"Planned, social violence is not a feature of autism. Indeed, autistic people are far more likely to have violence done against them than to do violence to others. No one knows as of this writing what drove the Connecticut shooter to kill 20 children and 7 adults, point blank, although obvious candidates are rage, hate, a huge grudge against humanity, and some triggering event. But if he turns out to have been someone on the spectrum, I'd like to remind everyone that autism is not an explanatory factor in his actions. And that autistic people like my son are fully, fully capable of empathizing with those who were the target of them."

9) The Dangers of Misrepresentation  

Lydia Brown
"Of course Autistic people are capable of committing violent crime, but it is in no way a reflection of their identity any more than when Jews, Blacks, or Muslims commit violent crimes. The neurology of an accused criminal defendant generally has little to do with the actual meat of the accusation and everything to do with ableist attitudes and legal defense strategies."

10) DSM 5 Autism Criteria: Clarifying Impact, Taking Action

Interview with Dr. Gil Tippy
"It's important to remember that these changes are not new news. They've been in process for the past four years, and these guideline changes have been posted publicly for the past 18 months. What has happened is that Dr. Fred Volkmar, who used to be on the committee but left the working group, decided to do a study to see how many kids diagnosed under the old criteria would meet the criteria for the new Autism Spectrum Disorder diagnostic category.  His study concluded that some of the kids who previously were diagnosed with PDD-NOS and Asperger Disorder would no longer meet the criteria for Autism Spectrum Disorder. The working group that is developing the new criteria felt that [Volkmar's] study did not take into account that a good diagnostician, a good Clinical Psychologist for instance, would look carefully at the child in light of the new criteria, and then diagnose appropriately."

11) Understanding Autism Acceptance: A Parent's Perspective 

Shannon Des Roches Rosa
"The most important part of Autism Acceptance for me, however, is understanding that Leo is not an empty shell, or a changeling. There is not some alternate Leo trapped inside his body, waiting to escape. Leo is here, right in front of me. Leo is Leo. He is the person he was born to be. He is his own awesome self.  

"I accept and adore Leo just as he is."

12) My Autistic Son's Joyful, Successful Disneyland Trip

Shannon Des Roches Rosa
"Leo's visit was a huge success, and Disneyland turned out to his Land of Yes. He got to do exactly what he wanted all day long, directing the action according to his interests and impulses -- an unprecedented freedom for a boy with a heavily structured life. He was also never bored, which can be an issue for people with communication challenges. Because of a Guest Assistance Card the Mouse thoughtfully provides for people whose wiring or needs makes it hard to wait in lines, Leo could get right back on any ride he liked, as many times as he wanted. (That pass also made him a hero in the eyes of his little sister Mali and eight-year-old cousin Christie, who got to tag along on all those instant-repeat rides.)" 

13) Sensory Issues vs. Behaviors: On the Recent AAP Policy Statement

Brenda Rothman
"We know pediatricians are overwhelmed by lack of information about autism and autism therapies. We encourage the AAP to partner with adult autistics, parents, and autism professionals, like occupational therapists, to consider the whole child, not just individual therapies. The pain, emotions, parenting issues, and risks of treating sensory as behavioral are too real. We need more from our the AAP and our pediatricians. "

14) The Last Place to Take Your Autistic Children

Karla Fisher
"I have been taking vacation time to attend Autism related conferences in an effort to expand my knowledge of the “autism profession.” This is a world that is uncomfortable for me at best and downright hostile at worst. Don’t get me wrong. I realize that these professionals are trying to do well. I know they have good intentions. But just after my promotion, I was literally brought to tears in one of the events. This is amazing because I am so strong. I fear today for those who are not so strong."

15) "Don't let your children grow up in a world where society devalues their lives."

Lydia Brown
"The truth is that we, Autistic adults, youth, and children, need you. We need you to support us. We need you to love us. We need you to listen to us, and to believe that whatever we have to say, write, sign, draw, or communicate in any other way is of vital importance whether or not you agree with it.

"Without your help and love, we might not make it in the world as adults."

Monday, December 24, 2012

Getting Through the Holidays!?

We chose the punctuation above for a reason -- cautious optimism and the hope that, with the right guidance and attitude, we can make it through the winter holidays, possibly even with some happy memories. So if you, your families, and your friends are hunkering down for the holidays; and if you, like some of us are also a bit ... stressed about changes in routine, location, or faces -- consider what the wise folks below have to say about navigating this most tumultuous time of the year. And if you have any advice, please leave it in the comments below!

Happy Holidays, friends. -The Editors

----

Self-advocate Annabelle Listic:

...it is especially important, during the holidays, for any autistic person to have:
  1.  A way to communicate basic needs, emotions, opinions (a travel dry erase board, sticky notes with simple language on each, a typing program on a phone, tablet, or laptop, a notebook to write in, et cetra)
  2. A safe place to retreat to in times of a needed break from others, escalation, and meltdowns
  3. Guidance to remember to take breaks, and to stim (it may make him/her feel more comfortable to see you stim with them)
 Read Annabelle's entire article Holidays, Autism, and Getting Through at Squag.com.

Parent Kate Gallagher Leong:
"My son Gavin has cerebral palsy and when he turned two, I wrapped every present and couldn't wait for him to open them on Christmas morning," says Kate Gallagher Leong of Chasing Rainbows
"It was one of the worst mornings of his little life. He has issues with fine-motor skills, and forcing him to use his hands to rip open the paper was more like therapy than Christmas. That's when I realized I shouldn't project my Norman Rockwell Christmas onto my child. The following year, every toy was out of its box and ready to play with, making a bright and inviting display under the tree. The look on Gavin's face as he moved from one toy to the other made it the best morning of all our lives!"
Read the rest of Ellen Seidman's article 5 Ways to Make the Holidays Happier for Children with Special Needs at Care.com.

Self-Advocate Corina Becker:
The holidays are filled with meeting people, lots of relatives, crowded house, parties, and other social complications that can make the basics, such as manners for receiving presents, more difficult to remember and perform.

Please keep in this in mind when interacting with others, that even if you know an autistic that is capable of being more polite, the overwhelming pressure on their social skills (and other skills) may mean that they are functioning on a lower level than their norm.  It may be taxing for them to remember simple Please and Thank Yous.

Be mindful of this, and be patient.  Little reminders on manners are okay, but don't be too insistent, because this is a very hard time of year and keeping the stress levels as low as possible all around is a good idea.
Corina's full article Surviving the Holidays with Autism, at Thinking Person's Guide to Autism.

Friday, December 21, 2012

The Great God Conspiracy: or, How Telling Your Autistic Kid Santa Isn’t Real May Not Go As Planned

Kate

Foreword from the author: This essay contains large Christmas spoilers, and may offend some people with deeply held theistic beliefs. I recommend that you stop reading it now, and if you read it anyway and are offended, then please do not complain.

I was two months shy of ten when I learned the truth about Santa Claus.

I was in fourth grade, and a year or two earlier, my voracious reading had convinced me that there was no way for it to be true. But then my best friend, told me that she had, in fact, stayed up until midnight the last Christmas Eve and seen him with her very own eyes put the presents under their tree.It never occurred to me for a second that she was lying, and my faith was restored for another few years.

That December, however, I decided that I needed to get to the truth. I remember sitting on the wooden counter in our old kitchen and telling my mother that we needed to talk. She half-panicked, thinking I was going to ask about sex, but no. “I need to know the truth about Santa Claus. Is he real or not?”

My mother, to her credit, only hemmed and hawed a little before deciding that I was old enough to understand that Santa Claus lived in all our hearts, something-something about Jesus and the spirit of giving, and yes, I was still getting presents, but the most important thing was that Santa wasn’t real, but a lot of people didn’t know that. So you should never, ever talk about how he didn’t exist, because it was really mean and rude.

I took that lesson to heart, and my mother was, I imagine, pretty pleased with herself. To this day, I’ve never spoiled a kid’s belief in Santa Claus. What my mother did not anticipate,however, was that I took that same lesson, twisted it about in my uber-ordered autistic mind, and applied it to God.

You see, to me, logically, it just made sense. I knew the basics of evolution and biology, and they didn’t square with any big-guy-in-the-sky. We didn’t go to church except the occasional Easter and certainly never Sunday School. I really had no idea why people were so into this whole God thing, but life in general was a very confusing thing to me and I just chalked it up to being another one of those mysterious social conventions I didn’t get, along with things like eye contact, small talk, and tact. As I got older, I thought maybe it had something to do with the placebo effect, and that praying made people feel good because when they prayed, they slowed down their breathing, got more oxygen into their lungs and calmed down. Just as I knew that Santa was fake, even though everyone talked about him and his picture was everywhere, I knew that God must be fake, too.

When I tell this story today, people think it’s funny, and I agree. But in my mind, it all made sense and, to be honest, it still does, even though I know it’s not true. There were conspiracies in the world, huge ones, from spy rings to Santa Claus. And I had proven how smart I was by figuring out the biggest collusion of all: the whole Bible/God thing was a story, just like Rudolph the red-nosed reindeer, only a bit older and with a whole lot more wars over it.

As a teenager, I grasped that people who told the truth about the whole god thing were called atheists, so I started calling myself that. In my twenties, however, I found religion, in the form of Unitarian Universalism, and it was at that church where, as an open atheist, I finally found out the truth about theism.

Which is this: That people believed in him. Like, for real. Like little kids believed in Santa Claus, only not, because these were grown people, educated people, people I respected and trusted, and they... They honestly thought that some invisible guy in the sky had something to do with everyday life? I could, on some level, understand where Christian and other religious fundamentalists came from: I figured that they must be stupid and not have had evolution explained to them properly. Simple. I mean, these were the same people who thought that Jesus was a tall white guy with blonde hair, instead historical Jesus I thought probably did exist who had short, brown-skinned dude with dark hair. However, to this day, it remains a puzzlement to me how people can say with such absolute certainty that God exists and not Santa Claus.

Well, people say, the parents put gifts under the tree. That’s a fact. And I like facts a lot. Give me a scholarly-reviewed article in an academic journal, preferably with several double-blind studies to back it up, proving the existence of god, and I’ll be just as happy as the rest of you. Until then, I’ll continue to go to church and sing the hymns and know that my religion, and my soul, are fine without any deities, just as I was fine without Santa Claus.

Note: My belief system is actually much more complicated than plain old atheist, as are most people’s, but I couldn’t go into it without derailing the piece completely. Suffice it to say, I am very happy with my beliefs and I hope you are happy with yours, and please don’t try to convince me otherwise. If you are a theistic Christian family, great. I just don’t recommend bringing Jesus or God into the Santa Claus talk. And I do recommend, highly, having a Santa Claus talk with any kid over ten who hasn’t figured it out yet. Autistics, as a whole, can be very na├»ve, and I was very shocked that my mother had lied to me when I never lied myself, so it’s better to get the whole thing over with and give them time to forgive you before they move out of the house. Not to mention the whole teasing and age-appropriateness thing. We are also very trusting, and if a teenager, especially a female one, still believes in Santa, she might get herself into a risky situation around the holidays or with people in costumes.

Lastly, if your kid knows the truth and forgets that he’s supposed to not tell, and ruins it for another kid or the class – the other kids will get over it. Don’t let your favorite autistic beat themselves up over it, because they’ll think they ruined Christmas for that person forever. They haven’t. Kids are tough, and we all need to learn the truth sometime.

Monday, December 17, 2012

Chanukah

Carol Greenburg
aspieadvocate-ascd.blogspot.com

Certainly ours is not the the most pious Jewish family in Brooklyn, so I was a little nervous when asked to write a piece about our  Chanukah celebration. When it comes to things Jewish, we follow the lead of A, our minimally verbal autistic son who took it upon himself this Chanukah to set up and light the candles, which are a central component of most Jewish Holidays and the be-all and end-all of Chanukah, otherwise known as the Festival of Lights.

The word Chanukah essentially translates as "dedication" commemorating the chutzpah, the sheer gall, of a Jewish rebel force called the Maccabees. This ad-hoc army defeated Greek occupiers who had systematically removed or defiled everything Jewish from the most sacred of Jewish sites, The Holy Temple. During the cleanup, the Maccabees discovered that the Temple's centerpiece, an eternal flame, had only enough oil to fuel it for one night -- but miraculously that tiny reserve somehow lasted eight nights, giving them enough time to fetch more oil to keep the flame burning, if not eternally, then at least until the Temple was destroyed many years later. But that's a different story for another commemoration, and definitely a whole other essay.

Anyway, to celebrate the restoration of the Temple, and the eight miraculous nights of light, Jews kindle candles watching them burn all the way down as we eat potato pancakes and other foods cooked in oil in honor of the eternal flame. At least that's how it's supposed to work according to tradition.

So this year, on the third night of Chanukah, A set up three candles the menorah, the candelabra we use for this holiday, wrested the shamash -- the so-called guardian candle we use to light all of the other candles -- from parental hands, and lit all four while I chanted the blessing. He participated in a few non-traditional rituals specific to our family as the candles began to burn: He ate the special Chanukah cupcake I made and decorated for him. (That ritual is the spoonful of sugar that helps his meds go down while there is so much disruption caused by holiday excitement.) He also opened his special dreidel-shaped cookie jar to find the third of his small eight Chanukah presents -- also a family rather than a universal Jewish tradition and a stroke of genius from my husband invented so A could have some version of the Christmas stocking experience without a fireplace mantel, Santa, or for that matter a Christmas stocking.

So far, so good. Completely kosher even, I'll wager, because Halakah, the Jewish legal code permits that which is not expressly forbidden, and at least to my knowledge our law does not forbid cookie jars in the shape of dreidels. But then the evening took an inarguably nontraditional turn.

All those candles A had carefully placed and lit, he blew them out.

Technically that's a no-no in Jewish rituals. We march to the beat of our own little yiddishe drummer boy around here, and eternal or not a flame is still a flame. Still, I suppose I momentarily worried about the extinguishing of those tiny fires, if I had somehow failed to convey the meaning of the ritual. But then I thought back to something very Jewish A did last spring, apropos to no specific Jewish holiday, and I realize how much he truly understand and embraces his heritage, and how fully he deserves the role of religious leadership he has claimed in our family.

That day, I saw then nine-year-old A place his hand on the knob of our gas stovetop and begin to turn it. I put the kibosh on that right away, reminding him that adult supervision is required when he pursues this other special interest, cooking. Only grown ups get to turn on the stove. But there was no cookware in sight, so I was confused until he rummaged through a drawer and produced a candle. Smarty-pants that I am, I thought I had it all figured out. Clearly, he wanted to play birthday party, like he used to with pretend candles, and to my relief at the time, pretend flames (For a while there, apparently every day was our cat's birthday.) But now, it seemed, he was aiming for greater verisimilitude. So I took a deep breath, and hoped the cat Fala's attendance would not be required, as his house-wide sniffing chores already fill his feline agenda. But I soon concluded that neither cats nor birthdays were foremost in A's thoughts.

My son locked eyes with me, took a deep breath, and said softly but clearly, "Baruch," Hebrew for "blessed," the first word of many Jewish prayers. Just for a moment, my heart stopped. It was my turn to take a deep breath. I asked him if he wanted to pray and he said yes. Luckily, back when I was affiliated with a congregation, I occasionally subbed when the cantor was out of town, so a simple Hebrew chant, I could handle. After I slowly articulated each word of the sabbath blessing that more diligent Jewish women use every week to welcome a much-needed day of rest, Arren carefully reproduced the words and melody. It took many repetitions, but he absolutely wouldn't give up until he had mastered the prayer. I have never cantillated myself hoarse for a more worthy cause..

The question remains of where my son's interest in Judaism came from, given the relatively non-religious aura of our household. Clearly his commitment is not the result of careful parental planning, but of serendipity.

Every weekday, A takes a school bus to a neighborhood very different from the one in which he lives. He spends much in this other world, the one where he finds some of his greatest joy His school has no religious affiliation but happens to flourish in the middle of a lively Orthodox Jewish neighborhood. Many of his friends and teachers are Orthodox and dress accordingly. Surrounding stores sell mountains of kosher goods, and the people who live locally celebrate every one of the many Jewish holiday with vim, to the point that I am beginning to think that A doesn't fully embrace a snack as such unless there's at least some Hebrew writing on the package, and thinks that every celebration has a Jewish component. On Thanksgiving morning, before he graciously allowed me to serve as his sous chef, he put on a kippah, the skullcap Orthodox boys and men wear.

There's no telling where his current relationships with Orthodox Jews will lead. A part of me hopes it will stick, even if it leads him down a radically different path from the one his parents have chosen. As uneven as my Jewish education is, even I know that Judaism calls us to balance individual needs with the common good, to reflexively offer material help to the sick, poor, or grieving, to do right even when, especially when, right is inconvenient. With or without accompanying rituals, those Jewish values are our values as a family. A learns new skills every day, but he may well need some kind of support throughout his life, and I will always be grateful to anyone has his back. Or better yet, anyone who will cheer him on as he lights his own way.

Sunday, December 16, 2012

Autism, empathy, and violence: One of these things doesn't belong here

Some news coverage in the last 24 hours has mentioned autism in the context of the tragedy in Connecticut, particularly referencing Aspergers or "high-functioning" autism. Talking heads have brought up the "empathy" factor when discussing autism, and I'd like to set some of the record on that straight.

Empathic ability comes in two forms. One is the social ability to recognize the emotion someone is feeling by following social cues, subtle vocal fluctuations, and other nonverbal communications. Psychopaths, for example, might be quite good at reading people, at applying this cognitive empathy and then possibly exploiting it. Autistic people, on the other hand, generally tend not to be that great at this kind of recognition in non-autistic people. After all, the hallmark of autism is difficulty navigating this territory and registering the meaning of a nonverbal language that is unfamiliar to them. Worth noting, non-autistic people also seem to struggle with reading the nonverbal communication of autistic people. It can also be difficult for autistic people to automatically place themselves situationally in the other person's shoes and intuit the emotion the other person feels, although again, non-autistic people seem to struggle to do this for autistics. Autism does not, however, preclude a person from understanding a clear communication about emotion.

The other form of empathy follows on the recognition of the emotion, whether the message comes through verbally or nonverbally, intuitively or not. That's the form in which you not only can intellectualize the person's emotion but also can internalize and feel what they are feeling, known as emotional empathy. The gap for psychopaths comes in here: They seem to lack this emotional empathy. But whatever deficits autism might carry in terms of recognition, it makes up for in terms of the shared feeling. My experience has been that once an autistic becomes aware of the other person's emotion, the feeling comes without a social construct, naked and in full, unmodulated. Certainly, the expression of their feeling can be more intense. Research shows that people with Asperger's are not that great at cognitive empathy but that their emotional empathy does not differ from people without Asperger's, whereas children with conduct disorder show the reverse pattern.

My 11-year-old son is diagnosed with Asperger's, soon to be simply "autism," thanks to impending changes in the DSM5. He is a rowdy giant of an 11-year-old who loves tumbling play with his brothers, but his spirit couldn't be more gentle. When he finds a spider in the house, he carefully gathers it in a tissue and places it outside, alive. He can't bear to watch people crack tree nuts, like pecans, because being something of a tree nut himself, he feels pain on behalf of the nuts. He is so attuned to all of my nonverbal communication that he will recognize and respond to a fluctuation in my mood faster than anyone else in our house, including my husband.

He knows about the Dec. 14 shootings in Connecticut. When he learned about them, his first response was to turn away in the chair where he was sitting, drooping his head over the back. He stayed that way for many long minutes, quiet and still. When he turned around again, my child who rarely, rarely cries, had tears in his eyes. And then, his first urgent concern: That we break from homeschooling and go get his brother, our youngest son and in first grade, from school ... now. And as we drove to the school to pick up his brother, whom I badly wanted to see and hug and hear, my oldest, autistic son voiced what I'd already decided: "Let's not tell him what happened. That's not something he needs to know. It would make him too anxious and scared." Perspective-taking and empathy, you see.

Planned, social violence is not a feature of autism. Indeed, autistic people are far more likely to have violence done against them than to do violence to others. No one knows as of this writing what drove the Connecticut shooter to kill 20 children and 7 adults, point blank, although obvious candidates are rage, hate, a huge grudge against humanity, and some triggering event. But if he turns out to have been someone on the spectrum, I'd like to remind everyone that autism is not an explanatory factor in his actions. And that autistic people like my son are fully, fully capable of empathizing with those who were the target of them.



This post was previously published at www.emilywillinghamphd.com

Saturday, December 15, 2012

How One Mother with Asperger Syndrome Grieves Sandy Hook Elementary Victims

Today, December 14, 2012, I got a text about four minutes before I walked into my son's school to play the piano for a winter program. The text said that 18 (then up to 20) children had been killed at an elementary school, not unlike my son's. Children the age of the children I would be making music with in a few minutes. I was in shock. The texts I was receiving came from my dear brother, who has small children of his own. Since I was not online or near any media sources, he wrote to me what I was seeing on breaking news, and we texted together, as parents, about how horrible, how unthinkable, this heinous act was. His children were with him; mine was in school, and I had to resist an overwhelming impulse to sign him out and leave.

Then I had to go into the school. I told myself that I would not let any children see the anguish I was feeling for the Sandy Hook Elementary children, their parents, for the principal and the teachers. This was the way the adults (and some were just finding out after I was already in the building) protected both the children (and ourselves), for the rest of the school day.

President Obama, offering condolences on behalf of the nation, said "I know there's not a parent in American who doesn't feel the same overwhelming grief I do."

Not a parent in America. Overwhelming grief is what I am feeling, as a parent, a community member, a volunteer in my child's school.

I would like to say that I am grieving just like every other parent in America. I am not. I would like to say that there will be time later to write about the media speculation that the shooter had Asperger syndrome (as well as a personality disorder and OCD) all unverified but being bandied about on any number of news outlets and web sites. There is not; the time is now.

Whether or not the shooter turns out to be on the autism spectrum, this appalling act was committed by an individual person who made a choice. The choice may or may not have anything to do with the killer's neurology, and it is not likely that it does. It has never been shown, and won't be now as a result of this tragedy, that any particular neurology is more prone to committing truly horrendous crimes, including "typical" people.

I just want to grieve without having to worry about a different set of children -- children who are growing up on the autism spectrum, or with atypical neurologies, with mental health conditions, who are not prone to violence by virtue of having these disabilities, but who could be negatively affected by assumptions that "all these people are dangerous" or even that "all these kids are going to grow up to be no good." (And, yes, I have had parents tell me that someone somewhere along the line has said just that to them about their child.) I would like to be able to grieve just as other parents all over America are doing, without the added baggage of the media's portrayal of Autistics as "dangerous loners" (or of "dangerous loners" as Autistics).

As an Autistic mother, though, I have to think about the effect of media on children with disabilities and mental health conditions, children who may be frightened about their futures because of a determinism that says "You might grow up to be a killer if you are Autistic." The media is doing it again, and so I don't have the luxury of grieving like parents all over America. I have to care about and care for, people with disabilities who are targeted by sensationalist media reports, as well as, at the same time, feel the sorrow I do for the parents, family members, and community in Newtown, Connecticut, that is stunned by the events of today.

The last time the media did the "speculation that the killer is Autistic" thing was the Aurora shootings, and it was completely unfounded. I wrote about that here, and said something that applies to the media coverage of todays' tragedy:
"First, and most important, we need to mourn the victims of the senseless shooting Stop thinking about the killer for a moment and remember the victims and their loved ones.

"When crimes like this happen, it is in some ways easier to turn toward the perpetrator, speculating about the person's mental health, life history, and motives. It is much easier than thinking about the dead victims, the victims in the ICU, the people whose lives have been shattered, the stunned, crying, angry families who will never see their loved ones again. It is so much easier to turn away from their pain and to become fascinated, fixated on the killer."
Most people who have Asperger syndrome are not murderous in nature, and are as appalled by this event as everyone else. Most people with any number of mental health conditions also are not murderous. The thought makes for exciting media coverage for people who can't see that another group of people is being hurt. Ultimately, it won't matter what "disorder" Adam Lanza had, since "having something" can't be shown to be the reason he committed one of the worst crimes in our nation's history.

I am now going off to take my own advice for the first time today, having some time to myself after being with children all day. I am going to remember the victims and their loved ones, some of whom may have had Asperger's syndrome themselves, but were gunned down just the same. I am letting myself grieve, if I can, just like, and with, parents all over America.

Related articles:


A version of this post was published at paulacdurbinwestbyautisticblog.blogspot.com

Friday, December 14, 2012

TPGA's All Ages Holiday Book Guide

Do you love to give and receive books? We love to give and receive books. So for you and for us, here's a short selection of recommended books by, for, about, and enjoyed by autistic people and their families.

If you have additional suggestions for books that you, your child, or your clients enjoy, please list them in the comments. And consider TPGA Editor Kassiane Sibley's suggestion that books focusing on a person's special interest topic are ... usually a good choice.

Non-Fiction 

 

Loud Hands ($24.99) - Julia Bascom
"Loud Hands: Autistic People, Speaking is a collection of essays written by and for Autistic people. Spanning from the dawn of the Neurodiversity movement to the blog posts of today, Loud Hands: Autistic People, Speaking catalogues the experiences and ethos of the Autistic community and preserves both diverse personal experiences and the community’s foundational documents together side by side."
Keep up with The Loud Hands Project at theloudhandsproject.tumblr.com.

I Love Being My Own Autistic Self ($9.99) - Landon Bryce
"I Love Being My Own Autistic Self is a funny and upbeat book for autistic people, their families, and others who care about them. Author Landon Bryce uses a colorful cast of cartoon characters to gently introduce neurodiversity, the idea that neurological differences should be respected and valued."
See Ariane Zurcher's interview with the author at The Huffington Post.

We've Been Here All Along: Autistics Over 35 Speak Out in Poetry and Prose ($12.95) - Rachel Cohen-Rottenberg
"We've Been Here All Along: Autistics Over 35 Speak Out in Poetry and Prose is a new anthology that showcases the work of autistic writers throughout the United States, Canada, the United Kingdom, and Australia."
Rachel blogs at www.disabilityandrepresentation.com and www.autismandempathy.com.

The Art of Autism: Shifting Perceptions ($39.95) - Debra Hosseini
$10 off through December 22nd. Use the code “Holiday”
"The Art of Autism: Shifting Perceptions explores major themes including unique abilities of some on the spectrum, the importance of family in nurturing creativity, the significance of a late diagnosis of Asperger’s, the use of alternate means of communication, and collaboration. Much more than an art book, this book has stories of overcoming challenges, inspiration, and hope. Join the Art of Autism experience – become part of our movement!"
The Art of Autism site: the-art-of-autism.com.

The Politics of Neurodiversity: Why Public Policy Matters (Disability in Society) ($55.00) - Dana Lee Baker
Steven Kapp writes, "The book provides a thought-provoking overview of models of disability and how different agendas (rights, celebration, care, cure) intersect and contrast. It has both academic and practical/public appeal about tensions we face every day in trying to improve individuals' quality of life and achieve a more just society."
 The author is an Associate Professor and Director of Program of Public Affairs at Washington State University, Vancouver.

Thinking Person's Guide to Autism ($19.50) - Shannon Des Roches Rosa, Jennifer Byde Myers, Liz Ditz, Emily Willingham, and Carol Greenburg
"Refreshingly free of dogma, disinformation, and heavy-handed agendas, The Thinking Person's Guide to Autism is an oasis of sanity, compassion, and hope for people on the spectrum and those who love them." --Steve Silberman, senior writer for Wired magazine and autism/neurodiversity blogger for the Public Library of Science
See the onslaught of stellar reviews telling you exactly why you need (to gift) our book.


Fiction - Adults


The Madness of Lord Ian Mackenzie ($7.99) - Jennifer Ashley
An autistic character portrayed as not just brilliant but totally hot -- and in need of acceptance, not conformity (the word 'autistic' is not used as the Victorian time frame predates the label). Very NSFW.

"One kiss from Ian, and Beth is prepared to give up her quiet new life as a widow and indulge in a scandalous affair with the sexy Scottish nobleman. But Beth knows that Ian is not dangerous. Even if everyone else in society might believe he is connected to the murder of two different women, Beth believes Ian is innocent, even if it means risking her life to prove her faith in him."
The author's site is www.jennifersromances.com.

LoveAnthony.jpgLove Anthony ($15.88) - Lisa Genova
We need more fictional approaches like Genova's -- the only miracle is the shift toward acceptance in a mother's perception of her autistic son.

"Olivia Donatelli’s dream of a “normal” life shattered when her son, Anthony, was diagnosed with autism at age three. Understanding the world from his perspective felt bewildering, nearly impossible. He didn’t speak. He hated to be touched. He almost never made eye contact. And just as Olivia was starting to realize that happiness and autism could coexist, Anthony died."
See TPGA editor Shannon Rosa's interview with Lisa Genova at BlogHer.


Fiction - Kids



Wildwood ($8.99) and Under Wildwood ($12.23) - Colin Meloy, illustrations by Carson Ellis
Colin Meloy and Carson Ellis are the parents in an autism family. They've created an "epic fantasy-adventure series" that could only happen in Portland, Oregon. Are there any autistic characters? You'll have to read and decide for yourself.
Colin Meloy posts stuff at colinmeloy.tumblr.com, Carson Ellis can be found at www.carsonellis.com.

A Wrinkle in Time ($16.46) - Madeline L'Engle
"Everyone in town thinks Meg is volatile and dull-witted and that her younger brother Charles Wallace is dumb. People are also saying that their father has run off and left their brilliant scientist mother. Spurred on by these rumors, Meg and Charles Wallace, along with their new friend Calvin, embark on a perilous quest through space to find their father. In doing so they must travel behind the shadow of an evil power that is darkening the cosmos, one planet at a time."
TPGA editor Carol Greenburg says this book's "...female protagonist is a terrific role model for aspie girls."

Bone Series (Anthology: $25.38) - Jeff Smith
"Three modern cartoon cousins get lost in a pre-technological valley, speanding a year there making new friends and out-running dangerous enemies. Their many adventures include crossing the local people in The Great Cow Race, and meeting a giant mountain lion called RockJaw: Master of the Eastern Border. They learn about sacrifice and hardship in The Ghost Circles and finally discover their own true natures in the climatic journey to The Crown of Horns."
This series is a hit with nearly every graphic-novel-loving ASD or BAPpy child I know. -SR

All Cats Have Asperger Syndrome ($10.17) - Kathy Hoopman
Delightful color photographs of cats bring to life familiar characteristics such as sensitive hearing, scampering at the first sign of being stroked and particular eating habits.  Touching, humorous and insightful, this book evokes the difficulties and joys of raising a child who is different and leaves the reader with a sense of the dignity, individuality and potential of people with AS.
TPGA Editor Kassiane Sibley describes this book as "critically cute."


Contributors include Kassiane Sibley, Carol Greenburg, Emily Willingham, Steven Kapp, and Ibby Grace-Anderson. Any selection you don't agree with, however, is the responsibility of the editor listed below.

Wednesday, December 12, 2012

How Apps Can Support Social Skills

Shannon Des Roches Rosa
www.squidalicious.com
www.blogher.com

IMG_20120818_143327.jpgSometimes I think social skills apps are redundant, since iPads are themselves such social magnets. These tablets can motivate people of all abilities to interact, and give them a common ground for communicating. But as social skills are multi-faceted, and since different folks need support in specific areas, I am grateful for the variety of apps that allow me to turn my son Leo's iPad into a custom social skills springboard.

Leo doesn't always use apps developed specifically for fostering social skills. Instead, he relies more on apps created for communication and labeling purposes. Leo has a strong social urge, but he's often overwhelmed by the factors involved -- simultaneously processing names, body language, and words. He appreciates apps that simplify the socialization process, streamline his choices, or help him learn to identify people consistently.

Leo needs practice and options for learning to recognize people. We're pretty sure that, like many autistics, he has some prosopagnosia (face blindness), because he often struggles to identify people he's known for years, especially if he doesn't see them regularly. Recently he thought a new acquaintance was his uncle even though said acquaintance did not look like his uncle at all -- to us. Instead of focusing on face or skin color, Leo processed his identification using body shape (stocky) and baldness -- the features he most associates with my brother. We can't assume Leo sees what we see, but we can help him recognize people based on the features he prioritizes, because he is more successful with practice. And apps help him, a lot.

Word SLaPps lets Leo independently practice "knowing" people by sight, at his leisure, through importing photos and turning them into icons with custom voice-over. The goal is to then choose one photo from a randomized field (of up to six) when the photo's name is spoken. The voice-over feature is especially helpful for a boy who is better at listening than speaking, who is still learning to read, and who has at least 20 cousins and even more friends. The app also tracks Leo's success rate. You can also create several photo sets, and so can use different photos of the same people to help your child understand that the same person may look slightly different. Just don't put more than one photo of the same person in each set.

UntitledAnother, simpler option for is Answers Yes/No HD (pictured), which lets Leo choose between two customized buttons, also with photos and voice-over. This app was created to let users make binary choices, which means Leo can use it to either identify people when asked (by us, it does not have a built-in game function), or to make a choice between socialization targets (which affords him a degree of independence). This app is also an option for those whose fine motor skill needs make using the iPad screen difficult but who can use switches.

A third option is Write My Name, a writing and reading app that includes customizable photo-and-voice "name cards," and has the side benefit of getting to practice writing the names of the people in question. Whenever possible in all three of these labeling apps, I like to have the people in the photos also record their name. Associating their voice with their name and photo is another data point for Leo, and strengthens his ability to recognize them in person.

FaceTime With Leo & IndiaOnce Leo "knows" someone, the next step is to practice interacting with them, which we can do via the real-time video chat apps FaceTime (pictured, built-in for iPad 2 and higher) or Skype. Communicating via these apps allows Leo to focus on the social exchange itself, and not be distracted by ever-changing environmental factors of the IRL. And if we send scripts for the other person to use in helping Leo practice social exchanges (e.g., "What did you like best about camp?" "What did you eat for lunch today?" "Where do you want to go for your birthday?"), a video chat can make using those scripts less obvious.

UntitledBut of course Leo does socialize in person, and frequently at that. Social scripting or storytelling apps can prepare him for these scenarios, and also let him process and review them afterward.

One of the simplest apps for this purpose is ComicStrip - CS (pictured), which creates one-page comic strip style layouts with captions. We're also a fan of Pictello's customized interactive social storybooks, which are essentially digital photo books with captions and click-to-hear voice-over. We especially like the voice-over feature (custom recorded or text-to-speech) as it allows Leo to "read" his social storybooks even though he's not reading them.

Another social scripting option is Puppet Pals, which uses photo "cutouts" as characters on a "stage," lets you record voice-over and movements in real time, and then saves each "show." I prefer this app for preparing Leo for new scenarios, but children who can use Puppet Pals independently might find it helpful for processing afterward (Leo's little sister has more than 20 saved shows).

IMG_8486.JPG
Though Leo doesn't use most of the more formal social skills apps, there are still many excellent ones, focusing on either pragmatics/social language (Hidden Curriculum, Quick Cues, Conversation Builder) or structured exchanges like taking turns (Sharing Timer, Turn Taker). For those willing and able to take turns, then any app that allows for more than one player (Fruit Memory, Reversi/Keyano) will allow them to practice doing so. Apps with separate-purchase external add-ons like Yoomi (pictured) can help with the transition from digital to analog board games, should that be an area in which practice is needed.

Leo has to deal with social scenarios every day. And even though he is innately friendly and kind, socializing can be frustrating for him because of his recognition and language challenges -- but it gets easier if he has the opportunity to practice the sticky stuff, particularly if he's able to do so independently, or at his own pace. I'm grateful for the apps listed above and what they let Leo do, because practicing a wide range of social skills was much more difficult to arrange and certainly less centralized before Leo had his iPad.

Now that I've told you what we do and some of the apps we use, it's you turn -- which apps do you find useful for supporting social skills, and why?



A version of this post was previously published at www.blogher.com.

Monday, December 10, 2012

A Gift Guide from Thinking Person's Guide to Autism

Over the years many of us have struggled trying to figure out the perfect gift for our autistic friends or family, and while the quest may still be difficult, we're hoping that some of the suggestions we have below, and in our Amazon store will give you a quick way to shop, or open your eyes to a new way to think about gifts.

No matter who you're buying for, one thing we can all remember is to truly keep the recipient of the gift in mind. Gifts should be given because they work, not because they are "age appropriate" or "gender appropriate." A "practical" gift that may seem unfestive to you, may bring lightness of heart for someone who struggles to make ends meet. And always, consider what that person enjoys doing, not what someone thinks they should like.

Give a Gift of Independence  

Description: bus, metro, or other transit pass, meal delivery gift certificates, movie passes
Recommendation: Make life a little easier by removing the financial barrier for simple transportation, and even if you don't live nearby you can buy a friend dinner with a gift certificate. Even offering to set aside some time to drive for a friend, or run errands with, or for them, can make simple tasks take less time, and more enjoyable.

  • Good for Teens, Adults, college students
  • Look for local meal delivery (like Waiters on Wheels) or nearby favorite restaurants.
  • Check local transit agencies to determine an appropriate amount of money to send.
Recommended by: The TPGA Editorial team 

Give a Gift of Sensory Soothing
Description: non-glare task lighting, ipod or other mp3 player, weighted or soft blankets, a safe space heater, toiletries in preferred brands (or a gift card), gift certificates for massage or yoga. Tools for organization, like desk calendars, paper sorter trays, or offers to help with sorting and filing can be a big help, and clear a distracting environment.
Recommendation: Help create an environment that comforts and relaxes. Think of things that can soothe or calm, or better yet, prevent overload in the first place.
  • Good for all ages
  • Life is always better when our physical needs are met.
Recommended by: The TPGA Editorial team

Give a Gift of Clothing that Works
Description: soft hat and gloves, soft fleece jackets, compression leggings, seamless socks, shoes with hook and loop closure, elastic waistband pants. 
Recommendation: Seamless, tagless, and non-binding clothing would make anyone happier.
  • Good for all ages
  • Once you find an item that works, make sure you remember where you got it. You might want to buy an extra if the item is working really well.
Recommended by: The TPGA Editorial team

Give the Gift of Safety and Ease of Use
Description: Shatterproof dishware, comfort grip kitchen tools, kitchen shears
Recommendation: Make independent living safer, or encourage more participation from your autistic child in the kitchen with tools that work.

  • Good for any age 
  •  A purchase the benefits the whole family
Recommended by: Aspie Teacher

Give the Gift of Experiences
Description: tickets to a local amusement park, annual pass to the zoo museum or aquarium, wristbands for the beach boardwalk, Disney gift cards, tickets to a show at the art museum, movie tickets, tuition for summer camp or a specialized class.
Recommendation: The best gifts for our sons are experiences. They are both very active, and we can enjoy the experience as a family. We get out, have fun, and there's nothing more to store at the house!

  • Great way to support the entire family
  • Look for events and amusements that are local.
Recommended by: Sheryl who has 13 year old autistic twins.
 

Give the Gift of Stim!
Description: Diatonic Set of 8 BoomWhackers by Whacky Music. Set of 8 tuned plastic percussion tubes. Strike them (gently) onto any surface to change the quality of the tone, but the pitch remains the same. 
Recommendation: One of my son's favorite stims is tapping, and while empty water bottles make a good sound, these tubes make great sounds! Our whole family can have a jam session. These are lightweight, but very durable too. We have purchased two sets over the years, and while they are a bit beat up, they never bent or broken.
  • For ages 3 and Up (all the grownups at our house love them)
  • Can purchased at Amazon
Recommended by: Jennifer Byde Myers. 
 
Give the Gift that "Only that Person Could Love"
Description: Acorns (or rocks, marbles, figurines, whatever "it" is)
Recommendation: The best gifts have the recipient's needs and wants in mind. For our autistic son, that has always meant bypassing toys and gadgets and heading straight for ... acorns. His "unusual fixation" for almost his entire life has been acorns, so we've always bought acorn-related items for him for holidays and birthdays: books, games, actual acorns. What does the autistic person in your life love? That's the best gift guide of all.

  • Good for any age and ability
  • Look for the current, or continuing, thing that makes this individual happy
  • You may need to modify the item slightly to wrap it or make it an indoor present (river rocks can be washed and stored in a small plastic bin, for example)
Recommended by: Emily Willingham
 

Give the Gift of Good Information
Description: Thinking Person's Guide To Autism, Loud Hands: Autistic People, Speaking

Recommendation: Share Thinking Person's Guide to Autism with grandparents, friends, teachers, professionals for so they can have a positive, helpful, practical autism resource.
Loud Hands is the new book out by Autistics recommended by Kassiane Sibley. She says, "It's what we really think. It's got our history, it's got our past, our present, our hopes for our future. It's an "autism book" that the family, autistic member especially included, could share and learn from together. It can be a bonding experience, and it's one that's from...our culture, even."

Recommended by:  The TPGA Editorial team


We welcome additional suggestions, please put them in the comment section below, so everyone can benefit. Our Amazon store, filled with suggestions, will continue to be updated, and will remain available throughout the year.

 


Friday, December 7, 2012

Study Finds Shortcomings in Healthcare for Autistic Adults

AASPIRE
www.aaspire.org

Researchers with the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), have found that autistic adults, who represent roughly 1 percent of the adult population in the U.S., report significantly worse health care experiences than their non-autistic peers.

The study included an online survey of 209 autistic adults and 228 non-autistic adults.  Autistic adults reported more unmet healthcare needs, more frequent use of the Emergency Department, and less use of preventative services like Pap smears.  They also reported lower satisfaction with provider communication, and less comfort in navigating the healthcare system or managing their health.

AASPIRE Co-Director and principle investigator of the study, Dr. Christina Nicolaidis, said, "As a primary care provider, I know that our healthcare system is not always set up to offer high quality care to adults on the autism spectrum.  However, I was saddened to see how large the disparities were. We really need to find better ways to serve them."

AASPIRE is an academic-community partnership where academic researchers, autistic adults, and other community members work together throughout the project. AASPIRE is based at Oregon Health and Science University and partners with community organizations including the Autistic Self-Advocacy Network and the Autism Society of Oregon, as well as academic institutions including Portland State University, University of Indiana, and Syracuse University.

AASPIRE's community Co-Director, Dora Raymaker, noted, “While I am discouraged by the findings, I am also encouraged by the direct involvement of the Autistic community in all parts of this project. In order to ensure research that is truly useful to autistic adults, it is critical to involve us directly in the process.

The study also has important implications related to changes in the newly released Diagnostic and Statistical Manual of Mental Disorders (DSM-5), which combined Autistic Disorder, Asperger’s Disorder, and Pervasive Developmental Disorder Not Otherwise Specified into one new category of Autism Spectrum Disorder. The changes have caused controversy, including concern that some people who met criteria for Asperger’s Disorder or who do not have intellectual disabilities may no longer meet criteria for Autism Spectrum Disorders. Dr. Nicolaidis commented, "The existence of healthcare disparities in our sample, most of whom had diagnoses of Asperger’s and/or high educational attainment, highlights the possible negative consequences of stricter criteria. Not having a diagnosis may deprive patients and their providers of insights, strategies, and accommodations to improve healthcare experiences."

AASPIRE has received a grant from the National Institute of Mental Health to make an interactive toolkit to improve primary care services for adults on the autism spectrum. More information, including how to participate in the project, is available at www.aaspire.org.



This is a press release from www.aaspire.org.

Wednesday, December 5, 2012

Why Wouldn't Autism Parents Want to Presume Competence?

Jaden Walker
about.me/jaden.walker

A few days ago, congress held a panel on the rising prevalence of autism. As I worried, a great portion of the debate devolved into the long debunked connection between autism, vaccines, and mercury. To put it mildly, I spent a lot of it with my palm firmly attached to my face.

One of the redeeming portions was near the very end, where two actual autistics were allowed to speak: John Michael Carley and Ari Ne’eman. While I won’t get into everything that was said (these two were brilliant, as always), one moment is stuck in my head and I just can’t shake it.

One of Carley’s comments was (my quote is probably not exact), “Your sons and daughters with autism can hear what you say about them and read what you write about them.” Before he’d even fully finished the sentence, several people behind him began violently shaking their heads “no” in disgust.


Why would they react like this? Do they truly disagree with this statement? I think that it’s more likely that they just don’t want to believe that their kids will ever be hurt by the horrible things that they’ve said about them. I can’t imagine how painful it would be to come to the realization that all those times you called your non-verbal child a burden, curse, cancer, or any number of other hurtful terms, that they heard and understood you. But they can, and they do.

I’ve heard more than a few times from non-verbal autistics that have started using the internet to communicate. They’ve all told me about hearing their parents saying these things when they were young, as if they weren’t there. But they were. And they understood.

We can hear you. We understand you. Please stop saying such hateful things about us.

Monday, December 3, 2012

Over-Educated, Under-Employed: The Plight of the Adult Aspergian

Kate

A year from now, I turn thirty.

A year from now, many people my age are married, with a kid or two on the way. At the very least, they are living on their own, and supporting themselves. Living with your parents is okay in your twenties, but your thirties? That’s just too long for me. I want to be out on my own, doing my own thing, and much as I adore my mother I think I’ve had enough.

Yet I have the sinking feeling that I will still be here, still be living at home and cobbling together part time jobs, and damn, but I’m sick of it.
              
I’ve been looking for work for five years now. Five years! I finished my master’s thesis in the fall of 2007 and started interviewing for positions that fall. I’ve since gone on dozens of interviews at human services agencies, political organizations, and the like, but not received a single job offer. In the meantime, I babysit and do personal care work, supported by my mother and the wonderful state healthcare system.
              
Don’t get me wrong -- I am very happy, and I am grateful for everything I have. I do not live in poverty, I have a warm, caring community of friends, but it just gets so very tiring when everyone else has a regular job and a regular income, and you do not. It gets so very tiring when you are asked for the millionth time, "so what do you do?"  and you have to explain that you’re still unemployed. It gets so very tiring when you interview for a babysitting job that you could have done at age twelve and the mother inquires why you’re looking for babysitting jobs if you have a master’s degree.
              
I had my first paid, non-caregiving job this past fall when I did part-time work on a ballot question, but the election has come and gone and with it my hopes. I keep sending out my resume, but I get no responses. I know that even if I do get an interview, there will be ‘something’ off about me, something undefinable that makes people think, I wouldn’t fit in.

I’ve been through the state agency for people with disabilities. They tell me that I interview fine, that my resume is good, that they don’t understand why I don’t get hired. I don’t, either, but I’ve long since given up on getting any help from them. Even if I have a disability on paper, to most people, in practice, I’m just weird.

What I’m looking for is out there, I know it is, but what I’m looking for is people as much as a place.  People who will understand and accept me as I am, who will see how my strengths outweigh my deficits, who will pay me enough to live on, enough to move out on my own. People who acknowledge that interacting with people is very tiring for me, and who give me some space and solitude for office work.  People who understand that I do, in fact, have something valuable to offer, and who give me the time to show them this.

The trouble is, many of the entry-level jobs out there I can’t do. Working at a group home would be great, but the new people always get the late-night shifts, and I can’t function late at night. Temp work might get me in the door to a place, but it is often front-desk work, greeting people, exactly what I’m terrible at. Many jobs require you to re-locate, and I’m not willing to even consider that; I have a very secure, supportive community that I need in order to be happy and healthy. I thought that getting my advanced degree would help me, but it turns out to hinder more than aid, precisely because I am so overqualified for many jobs.

I’m very good at what I do now, and please don’t take that to mean I’m bragging, because I’m not.  I’m very good at soothing babies and doing personal care. But after this summer, after picking up some contract work that required me to research and write and analyze, I want more more than ever.   I want to challenge my brain, create new paradigms, collaborate on ideas, change social policy.

And I’m not alone. I know many people on the spectrum who are willing and able to work, but who just don’t fit in at traditional jobs, who need a bit of a tweak, a bit of support, to do well. Unfortunately, our society does not give out these supports freely, perhaps because they are so undefinable. Wheelchair-accessible office and bathroom -- those, you can measure with a ruler.  An office community that accepts and values neurodiversity -- much harder to measure, much harder to find. It would be easier, of course, if Americans did not value your economic labor so highly as to exclude almost all your other achievements, if they did not equate your earning potential with your life potential, but………
              
I don’t know how to fix this. I don’t know how to find a ‘real’ job any more than I know how to do higher mathematics. So I just keep on doing what I can, volunteering in my field, reveling in the infants I care for, and making my life the best I can, how I can. It is all I can do. It is all anyone has ever done.

----

Postscript: I deliberately chose to not reveal my field or location due to the fact that I wanted to emphasize how very common my problem is. I am not looking for job leads or suggestions by writing this; I am looking to publicize the fact that my story happens all over the country and will continue to happen, even in states with much-better-than-average disability services such as mine, unless something is done. What that is, I don't know, but it's past time we thought about this, not just for my generation but for the generations to come.