Change.org's Autism Blog

Sensory Integration and Implications on Understanding Speech

Dora Raymaker — 2009-07-04T12:07:00-07:00

Many of us on the spectrum report a lot of difficulty making out what people are saying. Some of us have been additionally diagnosed with auditory processing disorder (sorry about the "in children" insistence in that article--it's otherwise a good article and the info is true of adults as well). Difficulty separating foreground from background noise is commonly reported. Earlier this year I posted on mono-sensing and understanding speech and questioned whether difficulty integrating vision and hearing might contribute to auditory processing issues.

Now it seems like there's some science backing up our experiences from City College of New York's Dr. John J. Foxe,

"Sensory integration dysfunction has long been speculated to be a core component of autism spectrum disorder (ASD) but there has been precious little hard empirical evidence to support this notion. Viewing a speaker's articulatory movements can greatly improve a listener's ability to understand spoken words, and this is especially the case under noisy environmental conditions.

"These results are the first of their kind to verify that children with autism have substantial difficulties in these situations..."

Foxe goes on to describe the implications this has for classrooms--that smaller, quieter classrooms that are more accommodating of auditory processing difficulties are a good idea.

"Being able to detect speech in noise plays a vital role in how we communicate with each other because our listening environments are almost never quiet. Even the hum of air conditioners or fans that we can easily ignore may adversely impact these children's ability to understand speech in the classroom."

Again, children children children, but these issues are definitely not limited to children! The science doesn't generalize, but the concepts likely do (at least they do in my experience as an N of 1). Environmental system hums, lighting hums, the shuffling of papers and clattering of pens and shifting in seats--all things that as a graduate student I fight through in order to make out what the instructor is saying. And background noise is always there--it does not "turn off." This makes listening to speech something that is exhausting, fades in and out, and is deeply unreliable.

Autism may be less "mysterious" when our experience of the world, such as our experience of others' speech, is better understood. This can pave the way to more accommodating environments which may lead to more opportunities and a higher quality of life.

image is a spectrogram of a man saying "19th century," source wikipedia

No Fireworks For Our 4th

Kristina Chew — 2009-07-04T00:39:00-07:00

Lately my son Charlie has been overwhelmed by sounds. This is still a fairly new development: When he was younger, while other autistic children were putting their hands over their ears and crying at barking dogs, Charlie would be unrattled. It's been in the past year that Charlie has clearly become highly, and painfully, attuned to sounds. Certain sounds---those barks, a metal object hitting the floor, someone's loud voice---has evoked a more extreme response, leading us to think, something literally hurts when Charlie hears those sounds.

Jim and I have been listening very closely to the sounds around us and, with Charlie, cringing at every Harley that passes the black car on the Garden State Parkway and tuning in carefully to the volume and pitch of our own voices. Seeing Charlie bow his head and cover his ears when no one is talking, we've realized that he's hearing everything in the background: Fluorescent lights, air-conditioners and fans, the pool filtering system. Charlie sometimes puts on his iPod and noise-canceling headphones, but sometimes just listening to even preferred sounds seems too much. I've been shopping around for noise-canceling headphones of all types (like the kind you use to mow the lawn with) and stuff like a summer-weight hoodie (Charlie always liked having a heavier fleece one in winter). (Suggestions for dealing with this are quite welcome.)

At home, we can keep things quiet, but none of us (Charlie in particular) could hardly stand just to stay in here: Out we must go, seeking to put a little control on the situation with pictures and schedules, explanations and stories. Still, we can't control every single sound. Ambulances will go screeching by and motorcycles, especially because it's summer, it's gotten hot after a rainy June, and, here in the US, it's the Fourth of July weekend.

Which brings me to the subject of fireworks. The Fourth of July falls on a Saturday this year so it's become the reason for a long weekend, with celebrating starting yesterday (and I heard fireworks even on Thursday night). We won't be seeking out any fireworks displays tonight, but some thunderous noises from the sky are going to be inevitable. Charlie's been curious to see the bright displays in the past, but I'm suspecting he'll have his head down and hands over his ears this year.

As in everything with Charlie, we've been trying to figure out the proper balance between changing and accommodating, and gently seeking to desensitize him to some of the sounds out there. A balancing act it is and one also requiring us to (like any parents) measure out how much to protect Charlie from what irks him, and to coax him into learning to live with it.

But I'm still glad fireworks are pretty much a one-time-a-year thing. It's a noisy enough place out there already.

AS Emerging Film Maker

Dora Raymaker — 2009-07-03T16:00:00-07:00

Little Theatre's Emerging Filmmakers program in Rochester (NY) is featuring a film called Aging Trees of Knowledge: Part Five: My Legacy (Gittel Jaskulski). Here is local news of it. The film maker is Adrian Esposito.

The New York Office of MR & DD has a profile of Esposito, who found his expression through the medium of film. Esposito has been actively engaged in film making since the age of 12, and he currently has his own film company Espocinema. An interest he is hoping to turn into a career.

Here's the trailer for an AS-related film he made at 16. (not captioned, sorry)

Esposito's focus seems to be on history and human rights issues. A new film is planned "We Can Shine - From Institutions to Independence, will focus on the positive changes that have occurred in the treatment of people with disabilities and on self determination in their lives." The documentary is intended to focus on Willowbrook. Sounds like a project that is needed. Much looking forward to Esposito's work in the future!

West Virginia Legislation to Establish Trust Funds

Kristina Chew — 2009-07-03T14:20:00-07:00

Yesterday in West Virginia, Governor Joe Manchin signed into law new legislation that is designed to encourage the creation of trust funds for the future support of children on the autism spectrum. As reported in Metro News, under the new legislation, families with autistic children will be given a tax credit of up to $2,000 a year for contributions made to trust funds which are to be used when the children become adults; this new legislation is the "first of its kind in the country." Says Barbara Becker-Cottrill, Executive Director of the Autism Training Center which is located at Marshall University in Huntington:

"When you have a child with autism, you've got, really, constant worry about what's going to happen to your child when they become an adult......It's 24/7 concern and, then, the true worry is what will happen to them if you're not there to care for them and love them?"
....
"This bill will provide, not just the tax credit for families in the here and now, but I really think it's going to give our families a sense of security, a sense that the future is a little brighter for their child when they become adults."

That's the kind of forward-thinking legislation one hopes to see more of, for the times when children become adults, when everything isn't shiny anymore.

A Device is Just a Device

Dora Raymaker — 2009-07-03T09:59:00-07:00

Anyone who reads what I write here (all 6 of you ;-P) probably knows that I'm a huge fan of assistive technology. However, it's important not to mislead about what an assistive technology really is.

I almost passed up Weighted Belt for Autism? -- Research Summary because, well, it's not, in fact, anything resembling a "research summary" (or even a well written or interesting article). But then it is pretty illustrative of this theme. Why would anyone think the application of a piece of assistive technology--a weighted belt--would be a "cure" for anything? Any more than a car is a "cure" for not being able to run really fast?

Sometimes unrealistic expectations get put on a device. Once a man observed me use my speech device--something I have high levels of skill in. "I want one just like that," the man told others, and VR purchased him one. Then I was asked to help show him how to use it.

Now, I touch-type 80 - 90 words a minute, have been using typing-as-conversation for decades, my communication processes function natively in writing far better than they do in speech, and I've had benefit of working with an SLP who specializes in assistive technology. Unfortunately, the man is an exceptionally slow hunt-and-peck typer with a preference for speech over writing. And I am no SLP. This lead to some disappointment.

Or, here's a second story: My state has a lovely program to enable all individuals to have telephone access. I have a speaker phone through this program, and my speech device right next to it. However, I don't use the telephone any more than I did before I had this system. Because, well, I don't have any better phone skills than I did before I had this system. I still have no clue when it's my turn to speak, can't understand most of what an unfamiliar voice is saying, and any number of other things that make using the telephone functional.

The two-parter key point here is that, one, assistive technology can make a HUGE difference in the types of activities that are available to a person. I can do things with AT that I could never dream of doing without. But, two, this is not because of the device itself. A device is just a device. What makes a device truly functional is the individual who uses it.

Whether it's technology for sensory needs like a weighted belt (or my beloved extra heavy, knee-high boots), or a speech device, or a telephone, or anything all else, the usefulness of the item is going to depend on the skill, needs, and personality of the person using it as much as it is on the device. And successful use of a device is akin to successful use of a car or a computer--it's not a cure for anything, it's technology that enables us to do things we could not do otherwise.

A (Pun-intended) Shot on Division

Kristina Chew — 2009-07-03T00:48:00-07:00

I haven't yet written here about Dr. Eric London resigning from Autism Speaks. So here goes.......

(Getting ready for being given numerous links to numerous articles, websites, studies studies studies pointing to a "link" between autism and vaccines (there is no link), informing me I'm wrong, and so forth.)

Dr. London was a member of Autism Speaks' Scientific Affairs Committee. In his resignation letter posted on the Autism Science Foundation's website, Dr. London specifically noted that Autism Speaks' position that "there might be rare cases of ‘biologically-plausible’ vaccine involvement" is "misleading and disingenuous." As has been pointed out 'round the internet (here is Newsweek's coverage), earlier this year, Alison Singer resigned from her position as Executive Vice President of Autism Speaks; she specifically cited "concerns about Autism Speaks’ policy on vaccine research" as one reason for her decision. Singer is one of the co-founders of the Autism Science Foundation, along with Karen Margulis London. And, Karen Margulis Longdon and Dr. London were co-founders of the National Alliance for Autism Research (NAAR) which announced it would be "partnering" with Autism Speaks back in February of 2006; a year later, another autism organization, Cure Autism Now (CAN) also went under the aegis of Autism Speaks.

So what's going on?

Leaving aside conspiracy theorizing and attendant superstitious musings, I wanted to reflect on Dr. London's resignation by picking up on a topic that Dora has been writing about, that of the divisions among the professional, parent, and self-advocacy communities.

Like many autism groups, Autism Speaks is an organization with a focus on research and science and the more amorphous concepts of "autism awareness" and "autism advocacy."

Autism Speaks (like many autism organizations) is run by the parents of children on the spectrum. The topic of vaccines and autism highlights the divisions Dora has noted. Vaccines in particular are a topic among parents of autistic children and of children these days more generally. It is a topic that is divisive in itself, and it is a topic that is not about autism. It's a topic about a hypothetical cause of autism that some feel very passionately about, and perhaps all the more so as it becomes clearer that there is no link between vaccines and autism. Indeed, at times "there is no link" seems to be a stimulus for a full-barreled response about how those who say "there is no link" are simply wrong, wrong, wrong; are wilfully ignorant; aren't listening to what "real parents of real autistic children" have to say; and the like.

The subject of vaccines and autism has certainly received a great deal of attention in the autism community and also from the mass media and it seems that this will continue to be the case (as Mike Stanton notes in a post entitled Wakefield, distortion and the Sunday Times on Left Brain/Right Brain). This attention, while understandable, is misplaced and ultimately to the detriment of everyone in the autism community. There's plenty of uncertainty about what exactly causes autism; it is most likely genetic in origin. But, as I wrote back in February:

Dora's and my first action on this sight----Promote Respectful Language---asked people to think at least twice about the language they use when talking about autism and when talking to individuals on the autism spectrum. One reason that the alleged "link" of vaccines to autism is turning out to be so detrimental is that this hypothesis of autism causation suggests that having autism means an individual is "damaged" or has been "injured," or even "poisoned"; that autism is something that an individual can "get." Autism, it's implied, is analogous to some sort of external agent, some thing "outside" a child, that somehow "gets into" him or her and "makes" him or her "become" autistic.

Often I've wondered if the energy and emotion that gets put into the "vaccine issue" is displaced from worries and anxiety about the real issues at hand: The lack of supports and services, the paucity of schools, the painful attitudes and misperceptions about individuals on the spectrum---I could go on and on. If one-tenth of that "antivax/pro-vaccine safety" energy were directed to advocating for services and supports for individuals on the spectrum; for training more teachers and therapists; for creating more classrooms and schools and group homes and supported living environments for individuals on the spectrum.......

Kind of hard to imagine?

I think we can try. Doing so may not patch up the divisions and I don't know if they ever can be.

But I do know, as my son has gotten older, it's become more and more clear how he always was as he is, autistic; how he's always been Charlie. A shot didn't make him who he is: One could only wish that it were all that simple. But it isn't and it's been a good thing, a great project, for Jim and me to devote our energies, emotions and passions to making this world here and today a place that he can be in; to try to change the world for a boy and individuals like him who are too often excluded---divided---left out---forgotten. And we should be wary lest we get ourselves too wound up in theories, conspiracies, and "let's find someone/thing to blame for autism!" kind of thinking, and lest we forget about what really matters.

AS Valedictorian: Be True To Yourself

Dora Raymaker — 2009-07-02T16:14:00-07:00

The feeds are full of graduation stories this time of year, and Littleton (NH) had a graduation with a message about labels. The Valedictorian referenced his AS in his speech,

"I was born with Asperger's Syndrome," said Valedictorian Christopher Beaulieu during his address. "Being labeled as having Asperger's, I was told I couldn't do things such as telling jokes or giving speeches. Despite those assumptions, I have earned the opportunity to speak here today. I'm saying this because I'd like to make a point about labeling."

He advised his classmates and those in the audience to be true to themselves.

"Don't be a lemming. Follow your own path, even if it means some of your so-called friends might not approve of it," Beaulieu said. He received a standing ovation.

The Salutatorian sent the message in another way--instead of a spoken communication to the audience, she played a song on her clarinet; a medium that was more comfortable for her personally.

Assumptions, labels, and stereotypes are destructive after a point. There are so many benefits to being true to one's self (like an innovative way of giving a speech!). These young people happily have this to guide them at the start of their adult lives.

Will Work, Need Jobs That Fit

Kristina Chew — 2009-07-02T14:26:00-07:00

A recent NPR story recounts the quest of 55-year-old Michael Medina for a job. Medina had worked as janitor at Stacey's Bookstore in San Francisco until it went out of business in March. NPR makes it clear, the economic crisis affects both individuals with disabilities and those like job coaches who help them. Medina's job coach, Nina Asay, accompanies him on interviews, helps him learn what to do in a new job, and is here to "'help [him] out,'" as she herself says. But the San Francisco chapter of The Arc---the largest nonprofit helping individuals with developmental disabilities find general employment---is in danger of losing $3 million in state funding come September.

With all that said, NPR reports emphasizes that the greatest hurdle for individuals like Medina are people's attitudes.

......the biggest obstacle to placing people in jobs is negative stereotypes, says John Kemp of the U.S. Business Leadership Network, a national organization that assists with hiring and retaining employees with disabilities.

"The first response of the unenlightened employer is, 'No way. We have too many complex issues here, too many business processes that they will not be able to understand and execute,'" he says.

But Kemp says there are bright spots. Large national chains including Walgreens, McDonald's and Safeway continue to create opportunities for people with developmental disabilities.

And certainly more people seeing individuals with disabilities in jobs in the community is crucial to changing attitudes. To reiterate a question asked by Dora: Do we change people to fit jobs or find jobs to fit people? Can we change jobs and workplaces to fit people?

Can we craft locks and keyholes that will fit the keys, those who are ready to work like Michael Medina?

Exclusivity for Inclusion

Dora Raymaker — 2009-07-02T10:14:00-07:00

A special surfing group for ASD kids seems to be meeting with success. Reminds me of ASD night for both kids and adults at the Long Beach Aquarium. And also, some recent dances. What all these activities have in common is that they are exclusive to people with a specific set of needs. Is this a problem with "inclusion?"

Concepts of inclusion have always been hard for me to come to terms with. On one hand, I do not (obviously!) want to be discriminated against, denied an education, or denied any sort of opportunity I may want to seize. On the other hand, I frankly do not want to be included in most "community activities" and often resent the insistence of others that I be included. Good grief, the last thing I want to do, for example, is go shopping at a mall (or as I call it "maul")! Include me in a quiet afternoon hike instead, please! I often feel like that the word "inclusion" is used to mean "participate with all the others in all the same activities" which has never sat well with me.

At the ADA Section II and III talk, the speaker gave a fascinating example of inclusion. People with disabilities are to be included in the same activities as non-disabled people, except in the situation where in order to enable equal access, the activity needs to be modified. For example, a museum tour for people who are not blind would involve not touching the art; however, a special museum tour for people who are blind might involve people being allowed to touch the art.

In the rush to include include include, its important to not loose sight of what inclusion is supposed to be doing. It is not meant to simply fill a seat, to say, yes, this autistic person is in the same setting as non-autistic people of the same age. It is meant to actually include--to enable us to participate effectively in activities that are also open to others. Should we want to participate! (Never lose sight of self-determination.)

This may mean that, like the blind people at the museum, activities need to be created just for us. This isn't bad--it's good. It's the reason why some civil rights laws were created. For us at times, being included does not mean being forced to do the same things in the same way as others, but to do the things we actually want to do in the way that works best for us.

Still a Long Way to Go With IDEA

Kristina Chew — 2009-07-02T00:36:00-07:00

Back in April, I put up an action to Tell President Obama to Fully Fund IDEA. So far (as of writing this post) there are 1195 signatures. I had set the original goal at 500. The petition ends this Saturday, July 4th, so, please, one more push!

As the parent of a child with disabilities, I'm thankful every day for the Individuals with Disabilities Education Act. i really cannot imagine what Charlie's and our lives would be like without it.

That said, school is a struggle for my son, like many students with disabilities. It is not that he does not like learning or is unwilling to learn, or, even, that he doesn't like school. Since the time he was 2 and a quarter years old and started in a home ABA program, Charlie has liked learning. He aims to please; he used to hover at the front window to watch for the therapists when they walked or drove up, and greet them with a big smile. (He didn't talk in those days.) And he likes to go to school, wants to be among other children his age; likes to be busy and doing things.

But public school holds many challenges for Charlie and some that aren't always immediately taken into consideration.

There's some 1400 students at his middle school and (as far as I can tell; once upon a time I was a PTA co-president, but those days are long gone) the school is carefully, tightly run, with a big emphasis on academics and order. Apparently---Charlie's teacher has been asking---there is no room in the students' schedules to do some reverse inclusion with Charlie's class and the other special ed classroom at school; at his elementary school, students came in regularly during lunch and recess. Charlie is not mainstreamed in any subjects (his academics are far "behind" that of the students his age) and he and his classmates pretty much stay in one room all day, except for gym class first thing in the morning.

Many accommodations and supports are in place for Charlie and things look good on paper: His class has a 1:1 student to teacher ratio; his programs are individualized to his learning; he has picture schedules and much else made specifically for him. Public school is a challenging environment (and for students without "anything").

This won't be news to any parents out there: Schools can provide the staff supports and teaching methodology for students with disabilities. But there's only so much that can be done with the physical environment and the design of school buildings; about what it's like to be in a building with 1400 students not to mention teachers, staff, and administrators, all of whom have their share of needs and concerns and jobs and aren't thinking about a few students with some extra-big challenges.

Charlie's middle school seems to be the one school in the district that has yet to have extensive renovations to let go of its beige, brown, and stucco 70s-architecture-ness. The high school has a new auditorium, classroom, et cetera; the middle school has neither a track nor basketball courts; the students run around the circle in front of the school as a "track." There are some fields with grass and soccer goals but, well, you get the picture. Charlie's classroom is located in whatever room was assigned to his teacher; its windows look out onto a hallway. There is a courtyard visible through windows, but it's not what I'd call a sensory-friendly place, with the fluorescent lights (I know Charlie is highly aware of their hum; when we're in grocery and other stores with those lights, he puts his head down and his fingers over his ears). For awhile, there was a room next door that Charlie's teacher could use, but it's not always available (and not during the week of testing).

Gym in the morning is great, but Charlie has a lot of energy. Unlike the other students, he doesn't switch rooms between classes. Often he goes on walks throughout the day, outside or in the halls. But these aren't options when it rains (as it did almost every day for much of June), or when quiet is needed (as when the students had standardized testing during June). (I only figured out about the testing and how that changed Charlie's routine after the fact.) Add to this the fact that bells are constantly ringing and messages being relayed over the loudspeaker and you've got a lot of factors that need more than a 1:1 student-to-teacher ratio and ABA to address.

How can we keep making out schools more accessible? Create more accommodations? Factor in sensory sensitivities? I've only noted some concerns about the physical environment and classroom design, but what about accommodations to make some interactions between students with disabilities and "other" students possible? Somehow I don't think the best way to teach about diversity and acceptance of the differences of others is to keep students in effect segregated, in their classrooms or because of the demands of their academic curriculum---learning isn't only about being able to do advanced math, analyze literature, writes sentences in Spanish and French. There's a push in New Jersey to have more in-district programs for students on the spectrum. Such programs are more economical but for such programs to work, we need to keep in mind the full spectrum of accommodations needed.

The fact that Charlie has been attending public school since he was 4 years old has been no small feat. We've come a long with IDEA. The presence of Charlie and his classmates in the schools makes that very clear! But there is still such a long long way to go, and we have to keep reminding school districts that it takes everyone to make IDEA work, and just having the right things in place on paper is just the beginning.

Division, Again, but of a Different Sort

Dora Raymaker — 2009-07-01T16:00:00-07:00

I wrote (perhaps way too much) about professional / parent / self-advocate differences recently and the previous week (it is a topic that interests me very much). There's another sort of divide though: the division between the "autism community" and the greater cross-disability community.

At the Megaconference, there were mostly vendor booths from 1) disability rights organizations such as Disability Rights Oregon and the State Independent Living Council, 2) disability-positive service or research organizations such as Oregon ARC and the OIDD, 3) assistive technology companies, selling everything from ergonomic keyboards to telephones to toys.

...and then there were the autism-related booths. All about snake oil, pity, and panic. A harsh reminder of what disability rights groups have rallied against.

There were 65 presentations given over the course of three days, on topics from community weaving to the ADA. Those which were not autism-specific included things like the joys of communication without speech, assistive technology, healthy lifestyles, empowerment, acceptance, and accessibility.

...while the autism-specific presentations were about remediation, normalization, and intervention (remember what Kunc had to say about that).

It's as though autism has been left behind in a pre-1960's, pre-civil rights era. Often I feel as though many people who work specifically with autism have no idea that we are part of a larger community--one that has fought and won some important civil rights battles, including initiating a cultural shift away from the attitudes that produce such demeaning treatment. What's up with that? And, way more importantly, how do we fix it?

Knowing About Autism Earlier & Earlier & Earlier?

Kristina Chew — 2009-07-01T14:23:00-07:00

A review of 40 studies in the British Journal of Psychiatry examines over 50 prenatal factors for autism:

The factors associated with autism risk in the meta-analysis were advanced parental age at birth, maternal prenatal medication use, bleeding, gestational diabetes, being first born v. third or later, and having a mother born abroad. The factors with the strongest evidence against a role in autism risk included previous fetal loss and maternal hypertension, proteinuria, pre-eclampsia and swelling.

(For the record: I was 28 years old when Charlie was born and had pre-eclampsia.)

A BBC report on the study from yesterday is (rather misleadingly) headlined Problem pregnancy 'autism risk' and quotes Richard Mills of Research Autism:

"Age is a very interesting line of inquiry, but it is very hard to tease out one clear factor. It is like trying to complete a huge jigsaw puzzle - we still just don't know how all the pieces fit together."

Indeed---just as as many as 100 genes have been linked to autism, so it seems that multiple factors are being identified and studied, and not one of them has been, it seems, taken off the table. One reason for such studies is to be able to detect autism at earlier and earlier stages of a child's life and, too, before a child is born. Another BBC news story reports that a "universal embryo test" is "'very near'":

The test - which will cost around £2,500 - uses a technique called karyomapping which looks for the inheritance of sections of DNA or chromosomes.

Rather than knowing the exact gene mutation which is passed down the generations in an family affected by a condition such as cystic fibrosis, doctors can just look for the block of DNA containing a faulty gene.

At the moment genetic testing of embryos is generally limited to a few conditions.

But karyomapping could in theory be used to test for any one of the 15,000 genetic defects known about.

Using the same test doctors could also look at whether any chromosomes are missing or duplicated which suggests the embryo will not be viable.

Autism is specifically cited as one condition--a "'major [disease]" that the test could be used for, by looking for genetic causes that occur in 5% of cases.

While there is currently no prenatal test for autism, it is looking more and more inevitable. In view of the British Journal of Psychiatry study on the causes of autism and how various factors in pregnancy might affect this, autism is definitely going to be something that families expecting a baby hear about.

All the more reason to get the word out about older children and adults on the spectrum and how, while things are often not easy, it's a good life.

Monday Autism News Potpourri (on Wednesday)

Dora Raymaker — 2009-07-01T11:00:00-07:00

Clearing out a some news stuff I didn't get a chance to transmute into posts while I was offline, plus some shameless self-promotion.

1. A new Medicare rehospitalization rate report states some alarming statistics (e.g., "almost one of every five [Medicare recipients] was rehospitalized within 30 days following discharge for an illness, or surgery"). This is why it's so very, very important to include long term supports and services in any health care reform that seeks to reduce emergency care and rehospitalization rates.

2. Sweet article in the New York Times They Taught Him to Fish, Then Let Go profiles a high school graduate and all the possibilities that are truly open for any one of us.

3. A slightly different sort of graduate profile, this one from college. I didn't like this article as much--it's a bit overboard with the "overcoming" type language. However, it does clearly illustrate the importance of self-awareness and self-advocacy in getting the kind of life you want.

4. Special interests, art, and employment = spray painty goodness for AS teen. Includes impressive photo!

5. A 5 Common Myths About Autism post for anyone who enjoys collecting those.

6. Shameless Self-Promotion: My research group the Academic Autistic Spectrum Partnership in Research and Education AASPIRE has started a new online research project. This project is open to people with and without disabilities, and to people on and off the autistic spectrum--in other words everyone! For more information about participating, please see aaspire.org/gateway.

Pulling with Control

Kristina Chew — 2009-07-01T00:28:00-07:00

"There is a fundamental difference in Japanese workmanship---to pull with control rather than push with force."

This quote is from a favorite book of mind, Obasan (1981) by Joy Kogawa. It's a novel about Japanese-Canadian Naomi Nakane and her family during and after World War II. It's written in language that is at times sparse and lyrical, poetic, and what's said is just as important as what is not, especially about what happened to Naomi's mother when she goes back to Nagasaki. "Pull[ing] with control rather than push[ing] with force" could describe how Naomi gradually finds out what really happened--is is tragic---to her mother.

"Pull[ing] with control rather than push[ing] with force" comes close to describing how we try to help Charlie learn, grow and move on in a world that's not inclined to accommodate to his needs. Sometimes, we pull too much, and maybe even (without meaning to) push Charlie too far and too much as on Saturday. And then, we remind ourselves how much Charlie and we learn from not always doing the same old same old and trying something different.

Monday something happened for the first time ever: Charlie and I went on a bike ride.

Bike running has been strictly a Charlie and dad thing. I rode a bike everywhere (even in the snow) when I was in grad school, but have been (1) very out of practice and (2) too nervous about Charlie. After a memorable (infamous) moment when Jim told me to let go of 6-year-old Charlie's bike and I couldn't let go and I ended up pulling him and the bike over on top of me, it has been felt, Jim handles the bike rides. Charlie has become so used to this that, when I tried to tail the two of them a few months ago (I have inherited Charlie's old yellow bikes), Charlie was unnerved and I betook myself on my own route around the neighborhood.

Monday around 1.30pm Charlie put on his bike helmet, said he wanted to ride bikes, and went to get his bike.

I explained that Jim was at work in New York and would be back in a few hours. Charlie first got out Jim's bike and arranged both his own and his dad's bikes nicely about two feet away from the curb, ready for riding action. After seeing how close a few cars came to the bikes, I explained to Charlie that I had to move them closer to the sidewalk. And, that Jim was not coming home for some time. I got out the yellow bike and talked about us doing a short ride, all while knowing, that's not really going to be possible: Bike rides mean some very specific things to Charlie one being, the route.

Before I knew it, he had gotten me Jim's bike helmet and was smiling when I shut the door and left a note for his sitter, who was to come at 2.30pm. Then Charlie was astride his bike and heading down the street and so was I and away we went.

Until we got to a fairly busy intersection, I felt a sense of ease skimming down the street, Charlie in front of me. As we neared the intersection, and he started to veer into the middle of the street, I was more than reminded of why I'm so grateful that Jim takes Charlie on these rides. Cars were turning, signalling, speeding up, slowing down, honking. I called out to Charlie to stop at the sign (he did) and go left (he did) and we went down some side streets, the breeze to our backs. We passed a street that would bring us in a nice circle back home if we made a left onto it: Charlie kept going.

And going and going, till we hit an ever busier intersection. He stopped and, on seeing me getting off my bike, did too. "This way," he said and pointed to the right. Instantly images of all the streets, and all the cars and SUVs and trucks, we'd have to ride by en route to various destinations "this way" (a playground we once visited a lot, a bridge Jim and Charlie habitually ride over) filled my mind. Without Jim's finely honed sense of how to guide Charlie in the streets and direct traffic, I knew we could be in some very sticky (and dangerous) situations. Plus, the sitter was probably at our house.

I told Charlie I needed to call her; of course, I didn't have her number saved on my phone. I thought and kept my words minimal, and to the point: She was waiting at our house. Dad would be home very soon and take him on ride. I was just not able to do it. Charlie was very consternated [understatement]. Thinking he's going one way and then being told he has to turn around, back track, is a transition that's especially difficult for him to negotiate his way through. He cried out and grasped the handlebars tighter, shook them, and started to get back on his bike. A trio of tweenage girls walked down the street as Charlie sounded his distress. Then, looking very worried, he pulled himself onto his bike and turned left, towards home.

He pedaled really really fast and fortunately we only had to go a few blocks before he turned left on our street. I spotted the sitter's car and then Charlie had stopped and put down the kickstand, and said "hi" as he walked past the sitter. He was on edge for a half-hour but calming after getting himself a couple of glasses of water and sitting on the old blue couch. He played with his Legos while the sitter tried her hand at some magnet blocks. Jim came back around 4.30pm and he and Charlie were off likethat. They rode far over the bridge that Charlie had in mind with me, and then beyond, per Charlie's wish.

May I just keep remembering the power of a patient, gentle push.

CIL Budget Cuts Reversed--Victory in NJ!

Dora Raymaker — 2009-06-30T16:00:00-07:00

Preempting my planned post for this afternoon to give good news for a change regarding state budget cuts! This just hot in my in box from Next Step:

The 200-plus people who rallied in Trenton on May 14 to restore budget cuts to New Jersey Centers for Independent Living can declare victory. All budget cuts have been restored!

This is the first time I've been able to post back with some good news, some positive results of self-advocate efforts to prevent the states from taking away our lifelines. Hopefully this can help encourage us to keep rallying, protesting, calling, and complaining. Keep telling your stories and making it known that it is not OK to balance the budget by taking away people's ability to survive or have any sort of quality of life.

It's hard work, but we still have hope of success, one small bit at a time.

Another Supreme Court Special Ed Decision

Kristina Chew — 2009-06-30T14:14:00-07:00

Back in 2007, Jeff and Sandee Winkelman won a Supreme Court decision (05-983) that allowed them to sue their public school district regarding their child's special education needs even if they did not hire an attorney. The Winkelmans were unable to afford a lawyer to challenge the Parma, Ohio, school district’s plan to educate their autistic son Jacob in a public school autism program. After questioning the appropriateness of the education that Jacob would receive in the public school program, they requested that the Parma School District pay for tuition at a private autism school, the Monarch School in Shaker Heights.

Unfortunately, the Supreme Court ruled yesterday that Jacob is not entitled to be educated at a private school at taxpayer expense. As reported in the Associated Press (via NBC4i) about Winkelman v. Parma City School District, 08-1089, he Supreme Court rejected an appeal from the Winkelmans concerning reimbursement for tuition for Jacob at the Monarch School. Tuition at the Monarch School is about $64,500 a year. In noting the progress that Jacob has made, Sandee Winkelman said:

“I’m very sad.......We were right in pursuing it.“

..............
“Jacob still has a disability and we have to look out for what we needs. It took him four years before he could even sit at a desk."

The Supreme Court's decision is highly disappointing: What kind of education will Jacob receive now if the Winkelmans are (as seems to be the case) unable to pay for the Monarch School?

It has not been all bad news for special education in the courts, keeping in mind this recent Supreme Court decision, that, even if a child has never received special education services from a public school district, the child is entitled to be reimbursed for tuition to a private school. And please ask your Congressperson to support the IDEA Fairness Restoration Act.

If we're going to provide our children with the education and the future that they need and that is their right, we can never stop raising our voices and asking questions; we can never stop advocating.

Division, Revisited

Dora Raymaker — 2009-06-30T11:40:00-07:00

Last week I posted about the divide between professionals, parents, and self-advocates, questions raised because I knew I'd be walking into a conference that was intended to cater equally to all three. There were divides, yes, and some of them necessary, good divides, and others--not so much. There was some common ground as well. There was definitely a lot to think about.

In a past life, I worked for a very long time in the field of technical communications, information design, and web development. I managed a company-wide intranet and wrote most of the documentation for a telecommunications / software development company. It's the sort of work that invariably starts with the question "who is the audience?" Because, well, writing a help file for customer service representatives is quite a different thing from writing a help file for a network engineer--or a troubleshooter. Context is then the second question: what does the audience need to get from the writing, how will the audience be using the information? Y'all expect complete sentences and something resembling good grammar in a blog post, but when you're frustrated with a piece of software you don't want to have to wade through walls of perfectly formed text--you want to see the solution to your problem instantly and fix it quickly. Speed of information retrieval is usually more important in software help files than proper grammar.

So, like, what does all that have to do with autism community divisions? Or a conference?

When Elesia and I were preparing our presentation on self-advocacy for people who use non-standard communication (focus on deaf and autism stuff), that question of audience and information usage was just as critical as it had been in my tech com days. Were we writing directly for speech/language professionals? For parents looking for things to teach their kids? Or were we writing this for people like ourselves? We had to write for all three audiences as best we could, but in the end decided to address the self-advocates as our primary audience. "I've sat through enough talks where a professional or parent talked about me 'the client' in third person, let them experience what it's like for a change," I even grumpily said. So our presentation made the assumption first and foremost that we were addressing our peers.

What does this have to do with questions of division within "the community?"

In some ways, yes, the divide is artificial and way more antagonistic online than it is in day-to-day "meatspace." However, in some other ways the fact that audience and context matters may point to some more solid reasons for why the divide does, and likely will always, exist.

How do I protect myself from abuse when I am invariably far too trusting of others? --This is a question I ask for myself. Answers need to play to my skills and strengths.

How do I know if the person who looks after my daughter can be trusted not to abuse her? --This is a question a parent might ask. Answers need to play to the parent's very different skills and strengths.

How do I teach the person I work with to have a better danger sense about others? --This is a question a professional might ask. Answers are in a different format here than for the parent or self-advocate.

The answers to these questions are, necessarily, different due to differences in perspective, motivation, and context. This isn't a bad thing, it's just a thing. Is there a way to make these different perspectives, motivations, and contexts complimentary and respectful instead of antagonistic and offensive?

Support the IDEA Fairness Restoration Act

Kristina Chew — 2009-06-30T01:21:00-07:00

The IDEA Fairness Restoration Act (HR 2740) was introduced in the U.S. House of Representatives on June 4 by Congressman Chris Van Hollen of Maryland and Congressman Pete Sessions of Texas. The bills amends IDEA to

...permit a prevailing party in an action or proceeding brought to enforce the Act to be awarded expert witness fees and certain other expenses.

That is, when parents go to due process in order to get appropriate services for a child under IDEA, they would be allowed to have a school district pay for expert witnesses called in the case.

Under IDEA, students with disabilities are guaranteed a free and appropriate education until the age of 21. In 1986, Congress adopted legislation that was meant to allow prevailing parents to recover their expert witness fees in due process cases filed against school districts. However, in 2006, a Supreme Court decision, Arlington Central School District v. Murphy, said that parents would not be able to recover these costs. That is, if parents now wish to seek an expert witness to build their case, they cannot seek to have these fees provided for by the school district. This in effect means that many families will not be able to provide their child with a free and appropriate education, as they are in effect prevented from building their case sufficiently.

HR 2470 restores the original intent of IDEA. In the Handicapped Children's Protection Act of 1986, Congress intended that parents be able to recover their expert witness fees. It can cost thousands of dollars to hire qualified medical, educational and other expert witnesses. If parents have no choice but to shoulder these costs, due process---and the chance to provide a child with disabilities with the education and accommodations they need and that is their right. At ASD World you can read some accounts of how students' educations have been affected by the Murphy decision such as:

From a Special Education Advocate in the Midwest, “Since Arlington, I have had no fewer than three clients who had to withdraw their request for a hearing, and no fewer than five clients who wanted to request a hearing but did not, due to the fact that they could not afford witness fees and costs.” She explained how one of her clients had become deeply depressed because he was powerless to to stop the school district from denying his children the educational services they needed.

Take action by contacting your Congressperson to support the IDEA Fairness Restoration Act and to support students with disabilities and their families like mine and yours.

The text of the bill:

A BILL
To amend the Individuals with Disabilities Education Act to permit a prevailing party in an action or proceeding brought to enforce the Act to be awarded expert witness fees and certain other expenses.

Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

This Act may be cited as the `IDEA Fairness Restoration Act'.

SEC. 2. INCLUSION OF EXPERT WITNESS FEES AND OTHER EXPENSES AS ATTORNEYS' FEES.

(a) In General- Section 615(i)(3) of the Individuals with Disabilities Education Act (20 U.S.C. 1415(i)(3)) is amended by adding at the end the following new subparagraph:
`(H) INCLUSION OF EXPERT WITNESS FEES AND OTHER EXPENSES AS ATTORNEYS' FEES- For the purposes of this paragraph, the term `attorneys' fees' shall include the fees of expert witnesses, including the reasonable costs of any test or evaluation necessary for the preparation of the parent or guardian's case in the action or proceeding.'.

(b) Effective Date- The amendment made by subsection (a) shall apply to any action or proceeding brought under section 615 of the Individuals with Disabilities Education Act (20 U.S.C. 1415) that has not been finally adjudicated as of the date of the enactment of this Act.

Megaconference Special #6 of 6: ADA Sections II and III

Dora Raymaker — 2009-06-29T16:00:00-07:00

The second session I went to on "ADA Day" was on sections II (publicly funded items) and III (privately funded items). This means accessibility for things like: public transportation and private taxi companies, court houses and retail outlets, and public hospitals and private clinics.

Three things I learned that I did not know before were:

1. You do not need to hire a lawyer to file an ADA complaint. You can complain directly to the Department of Justice. For education-related complaints, you can go directly to the Department of Education.

2. One of the things that can be directly requested in a complaint is that staff wherever the complaint has occurred be trained on ADA / disability / access / sensitivity, and even that they receive ongoing training on such.

3. A requirement to comply with the ADA is that all government services and institutions provide Effective Communication, including any "auxiliary aids and services" (this could include picture-based communication and communication devices). This is really quite huge for those of us who struggle with conventional communication, take a look at what the ADA toolkit says about Effective Communication.

Lots of good stuff out there that isn't always well-known! This is a powerful tool we have; need to use it more often.

Autism Therapy Fatigue

Kristina Chew — 2009-06-29T14:57:00-07:00

The relative of an autistic girl asks if there's such a thing as "therapy fatigue" in a letter published in the Manila Bulletin Publishing Corporation:

.....I noticed that the child is always tired of attending one therapy after another. She becomes cranky and would be moody at the end of the day. Sometimes, she even refuses to go out as if she doesn’t want any therapies anymore. Is there such thing as “therapy fatigue”? If yes, should I tell her parents to stop or lessen giving the child therapy session? If none, can you tell me until when should a child with autism continue to attend therapies?

Responds Dr. Myra V. Altonaga, a neurodevelopmental pediatrician based in Cebu:

...herapy fatigue often occurs in children who are subjected to daily therapies (not just one therapy). In other words, their daily routine would include going from one therapy to another.
In my clinical practice, I’ve encountered parents who would not be contented with the therapy in the center alone but would also get home service therapy within the day either just to fill up the schedule of their children, or to maximize the intervention.

But we have to remember that they are also children who want to play and do things that they enjoy. We have to give them enough time for these also.

Lessening the therapy sessions would be helpful. Anyway, the big factor for the success in the intervention would be the follow through and the active participation of the family members and not the frequency of the therapy sessions.

It's not hard for a parent to go into autism-therapy-overdrive with so many therapies and treatments, educational, biomedical, medical, etc.. When my son was younger, we tried many things; sometimes it felt (felt) that there was an unconscious feeling among parents that "the more we're doing, the more it shows how hard we're trying. Gradually---after seeing what helped Charlie and what not---we let go of the alternative biomedical treatments and focused on his education. The only doctors we visit now are the pediatrician (inevitable colds and minor ailments), the neurologist, the dentist. (And I think we all felt a sense of relief at not driving him every which way to yet another therapy appointment.)

When do you know when enough is enough?