Mixed Housing

At The Pittsburgh Post-Gazette, Mark Roth writes that local developers are building a complex that will house autistic adults along with non-autistic residents.

The Dave Wright Apartments will feature 42 one- and two-bedroom apartments, including six for physically disabled people, on the site of the former Wright’s Seafood restaurant in Heidelberg. About half the units are expected to go to higher functioning autistic adults who can live independently and hold a job, said Elliot Frank, president of the Autism Housing Development Corp. of Pittsburgh, which is building the complex along with ACTION-Housing Inc.

Mr. Frank said he expects the apartments, which received an innovation design award from the Pennsylvania Housing Finance Agency, to open in the fall of 2016. Financed under a federal law that provides affordable housing, the rents will range from $575 to $800 a month, and a single resident will not be able to earn more than $28,000 a year, he said.

While this project may be the first that mixes autistic and non-autistic adults, it is part of a recent movement to create affordable housing projects that put various special needs groups alongside typical renters. One ACTION-Housing project being developed in Bloomfield will house disabled veterans alongside regular renters, and another in Uptown combines typical renters with residents with hearing and vision disabilities, said Larry Swanson, executive director of ACTION-Housing.

The Heidelberg project grew out of a conversation a few years ago between Mr. Frank and Roy Diamond, an affordable housing developer in Philadelphia. Both of them have sons with autism, Mr. Frank recalled, and “we said to ourselves, once they’re grown up, where do they live? So we said, ‘Let’s do affordable housing for them so we can complete the puzzle for them on how to live independent, affordable lives.’ ”

Financing for the $13 million project is coming through the Pennsylvania Housing Finance Agency. Under the IRS code used for such projects, banks get $1 in direct tax credits for every dollar provided, and PNC is contributing $11.5 million of the financing. The rest is coming from Allegheny County.

Parental Experience of the Diagnostic Process

In The Politics of Autism, I explain that pediatricians often dismiss early parental concerns about possible autism and that  many diagnoses come relatively.

At Focus on Autism and Other Developmental Disabilities, Donald P. Oswald and colleagues have an article titled "Parental Report of the Diagnostic Process and Outcome: ASD Compared With Other Developmental Disabilities." The abstract:

Parents report that the process of getting an autism spectrum disorder (ASD) diagnosis is arduous, lengthy, and fraught with difficulties. This analysis of the Pathways survey data set examined the experiences of parents who said, at the time of the survey, that their child currently had ASD compared with parents who said, at the time of the survey, that their child currently had some other developmental disability. Despite substantially earlier parental concerns about their child’s development, the ASD group (n = 1,420) received their current diagnosis about 7 months later (M age at diagnosis = 62.8 months, SE = 1.62) on average, than did children in the group diagnosed with other developmental delay (n = 2,098, M age at diagnosis = 55.4 months, SE = 2.13). Parents in the “Current ASD” group were more likely to report that the health professional said nothing was wrong or that the child might “grow out of it,” emphasizing a common parental complaint. Continued efforts to improve parents’ experience of the diagnostic process are warranted.

From the article:

The fact that higher income families were more likely to have a child in the “Current ASD” group should not be considered evidence for prevalence differences based on socioeconomic status (SES); Kanner’s (1943) original hypothesis that autism was associated with parental intelligence (and education) has been dismissed based on abundant epidemiological data (beginning with Schain & Yannet, 1960, but demonstrated most conclusively in Schopler, Andrews, & Strupp, 1979). However, the finding does raise questions about differential access to adequate diagnostic assessment services, based on family income or parent education. Although this finding is somewhat peripheral to the primary questions of interest in the present study, it may serve notice that such differential access issues have not been eliminated.

Perhaps One Risk Factor to Remove from the Long List

Rachel Zamzow reports at SFARI:

Women who are overweight during pregnancy have an increased risk of having a child with autism. But genetics, not the obesity per se, may underlie the association, according to a study published 4 June in the International Journal of Epidemiology 1.

The study is the largest to date to point to maternal weight as a factor in autism 2,3.
It found that being overweight during pregnancy does not track with autism when researchers analyze pregnancies in only women who have both affected and unaffected children. The researchers defined ‘overweight’ as having a body mass index (BMI) between 25 and 30.

“When we looked at our data we were actually very, very surprised to see that the association with the maternal BMI had completely gone away,” says lead researcher Renee Gardner, assistant professor of public health sciences at the Karolinska Institute in Sweden. “It was a surprise that really forced a change of perspective.”

More likely, she says, maternal weight is a marker for a genetic contributor to autism.

GcMAF

Many posts have discussed dubious "cures" for autism.  Emily Willingham writes at Forbes:

According to a federal government warrant, the offices of controversial autism doctor Jeff Bradstreet were the target in June of a search related to an experimental drug for autism. The compound, globulin component macrophage-activating factor, known as GcMAF, is one that Bradstreet reportedly used in “over 2000 children” with autism. Bradstreet, according to authorities in Rutherford County, NC, committed suicide there on June 19, after the search warrant was executed in late June.

According to the copy of the warrant provided to me by the United States Attorney’s Office of the Northern District of Georgia, the search warrant was executed at Bradstreet’s Buford, GA, ‘wellness center’ because authorities were seeking information related to “evidence of a crime and contraband, fruits of crime, or items illegally possessed” associated with violations of interstate commerce statutes covering food, drug, or other products that are “adulterated or misbranded” and with “frauds and swindles” by “wire, radio, or television.” Punishments for those convicted of these crimes can include fines and up to 20 years in prison.

Marijuana for Autism?

A number of posts have discussed marijuana as a possible treatment for autism. Emily Willingham writes at Forbes:

And what about marijuana for autism? Compared to the studies done for schizophrenia, which number more than 1,000, autism and marijuana has gottenalmost no research attention. That hasn’t stopped a grassroots movement from growing up around using pot as an autism therapeutic, with one Facebook group,MAMMAS (Mothers Advocating Medical Marijuana for Autism), boasting almost 5,000 followers, and one writer and autism parent advocating for its use from a public pulpit.

But as the authors of a recent review note—and PubMed searches bear out—no studies exist suggesting clinical benefit for autism. Indeed, in a news release publicizing the review, the first author, Scott Hadland of Boston Children’s Hospital, is quoted as saying:

in using medicinal marijuana (parents) may be trading away their child’s future for short-term symptom control.

These authors also call for more research into cannibidiol’s effects and more emphasis on developing high-cannabidiol/low-THC products. Perhaps these compounds, rather than the plant, should be what we mention when we talk about these neurological therapeutics. After all, no one brings up using willow trees for pain or blood thinners, even though they originated the active compound in aspirin, and no one says they take ’foxglove’ as a heart medication–they take digoxin instead.

States and Special Ed

Christina Samuels reports at Education Week:

Nineteen states earned a "meets requirement" rating from the U.S. Department of Education's office of special education programs for the 2013-14 school year, according the department's latest report, which reflects the second year of a new, tougher evaluation system.

That was up from 15 states that earned that rating from the U.S. Department of Education last year, the first year the department evaluated states under a new "results-driven accountability" matrix. The states were evaluated last year on 2012-13 data. The system was designed to measure states on special education student performance as well as compliance issues, such as whether states meet various deadlines mandated under the Individuals with Disabilities Education Act.

States have also been asked to create a "state-identified measurable result," which is intended to be the foundation of a multiyear, comprehensive plan to improve student performance in special education. For example, a state could choose to focus on a goal to improve student literacy, and develop a multilayered plan of how to accomplish that goal.

In addition to meets requirements, states can be rated in three additional categories—needs assistance, needs intervention, and needs substantial intervention. No state has fallen into the lowest category, though the District of Columbia has been in the needs intervention category for nine consecutive years. Each level triggers a different action from the office of special education programs, from referring states to technical assistance to requiring states to use some of their federal special education money to address the areas of deficiency.

This year, 30 states were found to need assistance in the report provided to states June 30, which is down from 32 in the report issued last year. In addition to the District of Columbia, Texas was found to need intervention, for the second year in a row.

"A Foot in the Door"

Lauren Mc Donald of the Morris News Service reports that Ava's Law has gone into effect.

Due to a new state law that took effect July 1, private insurance companies must provide coverage for the best therapeutic treatment for children with autism ages 6 and under.

Ava’s Law, passed unanimously this year by the Georgia General Assembly, requires private insurance companies to cover Applied Behavior Analysis therapy for the first time in the state’s history. Georgia became the 41st state to require coverage.
...
Over the past eight years, the Georgia General Assembly has continually increased the amount of state funds appropriated for nonprofit organizations that provide diagnosis, care and treatment. The state provides $4.2 million to nonprofit organizations, such as the Matthew Reardon School, a year-round school for autistic children.

It costs $40,000 per year for the school to educate each student, said Patti Victor, the school’s president and CEO. State and private funding allows the tuition to remain low enough for families to afford.
...
And even though Ava’s Law has been passed, she said a lot of families still do not have private insurance and will not be covered because the law only applies to insurance companies selling policies. It doesn’t include large employers who insure themselves. However, the state’s insurance for government workers and teachers began including the coverage last year, before the law required it.

Victor said the law provides a “foot in the door” for future legislation.

“What’s happens when the child turns 7?” she said. “From a long-term standpoint, an important part of Ava’s Law is that it has put autism on the minds of people who have the ability to pass laws and to offer assistance.”

"In the Autism World, We Fight"

In The Politics of Autism, I explain that conflict pervades the issue.  At The Huffington Post, Michael John Carley makes a similar point:

Unlike the worlds of Cystic Fibrosis, or Down Syndrome; the autism world also does not have one, primarily-unifying non-profit that everyone rallies around, goes on fundraising walks for, or volunteers for in the consensus-filled spirit of shared goals. In the autism world, we have a gajillion such organizations, almost never representing the entirety of the spectrum, and founded partly in the rejection of existing orgs. And with all those non-profits, no centralized guiding entity exists, or can exist. Sadly unable to coalition, they then compete for limited funds and press attention...by screaming. Whether it's spectrum folk like myself going after one another to jockey for attention,1,2, stating that Autism Speaks is complicit in murders, or destroying chat group relationships over semantic issues; OR whether it's the pro-cure folks producing the infamous "I Am Autism" video, the declaration that all 3 million of us can't use the toilet (uh, last I checked...?), the b.s. statistic of an 80% divorce rate, or the anti-vaxxers' insinuation that people like myself are simply poisoned, chemical accidents...we get comedy worthy of Vonnegut.

The present leadership of major players in the world of autism politics--rather than trying to soothe or steer the emotions of its overwhelmed members towards healthier perspectives--often willingly, in that battle for recognition, pours figurative gasoline on the fires consuming their constituents (whereas in other fields, competitions are resolved by comparing the results of their programs). Instead of healing, big-picture perspective, they douse those who trust and need them with alarmist, often misinformative rhetoric.

In the autism world, we fight. We fight over words, vaccines, aversives, behavioral strategies, and what research is ethical or that which is not. Most of the consequences for winners and losers of these fights surround our attitudes towards what constitutes a happy life, and this is rather big stuff; while other battles--vaccines and aversives--can determine whether people live or die. There is cause for anger, especially when services are the opposite of satisfactory, yet the majority of funding goes towardsgenetic studies having no impact on families living today.

Measles, Death, and Immunization

Kim Christensen reports at The Los Angeles Times:

Three days after Gov. Jerry Brown signed one of the nation's strictest mandatory vaccination bills, several hundred opponents rallied in Santa Monica on Friday and vowed to repeal it.
...

Speakers at the rally included Andrew Wakefield, whose 1998 study in the medical journal Lancet claimed a possible link between the measles vaccine and autism. The study was later debunked as fraudulent and retracted, but Wakefield remains a hero in the anti-vaccination movement.

"I have been in this for 20 years and I will fight this battle until I die, because your children are worth fighting for," he told the crowd, which gave him a rousing ovation.

Tony Muhammad, student Western regional minister in the nation of Islam, invited the audience to join in a multicultural, multi-religious effort to repeal the vaccination bill.

"I will be damned if I'll let anyone come into my house and tell me what to do with my children," he said.

Frank Bruni writes at The New York Times:

The anti-vaccine agitators can always find a renegade researcher or random “study” to back them up. This is erudition in the age of cyberspace: You surf until you reach the conclusion you’re after. You click your way to validation, confusing the presence of a website with the plausibility of an argument.

Although the Internet could be making all of us smarter, it makes many of us stupider, because it’s not just a magnet for the curious. It’s a sinkhole for the gullible.

It renders everyone an instant expert. You have a degree? Well, I did a Google search!
Vaccine opponents are climate-change deniers with less gluten and more Prada, chalking up the fact that they’re in a minority to the gutless groupthink of the majority.

They’ve learned that as soon as you allege collusion and conspiracy, you’ve come up with a unified theory that explains away all opposition and turns your lonely stance into a courageous one.

AP reports:

A woman killed by measles in Washington state had been vaccinated against the disease as a child but succumbed because she had a compromised immune system, a local health official told a TV station.

The woman's death was the first from measles in the U.S. in 12 years and the first in the state in 25 years.

The case wasn't related to a recent outbreak that started at Disneyland and triggered a national debate about vaccinations, according to the Washington State Department of Health. Officials said it was a different strain.

The Washington woman lacked some of the measles' common symptoms, such as a rash, so the infection wasn't discovered until an autopsy, department spokesman Donn Moyer said Thursday.

Dr. Jeanette Stehr-Green, the Clallam County health officer, told KOMO-TV in Seattle that the woman had been vaccinated as a child, but because she had other health problems and was taking medications that interfered with her response to an infection, she was not protected.

What Terms to Use?

From the preface to The Politics of Autism.

A major theme of this book is that just about everything concerning autism is subject to argument. There is not even any consensus on what one should call people who have autism and other disabilities. “In the autism community, many self-advocates and their allies prefer terms such as `Autistic,’ `Autistic person,’ or `Autistic individual’ because we understand autism as an inherent part of an individual’s identity,” writes blogger Lydia Brown.[i] Other writers prefer “people-first” language (e.g., “persons with autism”) since it puts the persons ahead of the disability and describes what they have, not who they are.[ii] For the sake of stylistic variety, this book uses both kinds of language, even though this approach will satisfy neither side. I can only say that I mean no offense.

[i] Lydia Brown, “The Significance of Semantics: Person-First Language: Why It Matters,” Autistic Hoya, August 4, 2001. Online: http://autisticadvocacy.org/identity-first-language/

[ii] Kathie Snow, “A Few Words about People-First Language,” Disability Is Natural. Online: http://www.disabilityisnatural.com/images/PDF/pfl-sh09.pdf 

At Autism, Lorcan Kenney and colleagues have an article titled, "Which Terms Should Be Used To Describe Autism? Perspectives From The UK Autism Community."  The abstract:

Recent public discussions suggest that there is much disagreement about the way autism is and should be described. This study sought to elicit the views and preferences of UK autism community members – autistic people, parents and their broader support network – about the terms they use to describe autism. In all, 3470 UK residents responded to an
online survey on their preferred ways of describing autism and their rationale for such preferences. The results clearly show that people use many terms to describe autism. The most highly endorsed terms were ‘autism’ and ‘on the autism spectrum’, and to a lesser extent, ‘autism spectrum disorder’, for which there was consensus across community groups. The groups disagreed, however, on the use of several terms. The term ‘autistic’ was endorsed by a large percentage of autistic adults, family members/friends and parents but by considerably fewer professionals; ‘person with autism’ was endorsed by almost half of professionals but by fewer autistic adults and parents. Qualitative analysis of an openended question revealed the reasons underlying respondents’ preferences. These findings demonstrate that there is no single way of describing autism that is universally accepted and preferred by the UK’s autism community and that some
disagreements appear deeply entrenched.

Smell Test for Autism? Maybe, Maybe Not

Like many other outlets, The International Business Times is reporting on a possible "smell test" for autism:

It may be possible to diagnose autism in children by measuring their reaction to smells, according to a new study that found a marked difference in the reaction to odors from children with the disorder, compared to those without it.

While most people automatically inhale a pleasant smell deeply, and seek to limit their breathing in order to avoid unpleasant ones, autistic children do not make this distinction, the study, published in the journal Current Biology, found.

In The Politics of Autism, I discuss media coverage. Journalists frequently over-interpret or misinterpret research findings, and sometimes the stories rest on mere anecdote.  So we have had pieces about "miracle cures," medical tests, diets, multiple risk factors,

In this case, the study looked at 36 subjects, 18 of whom have autism.  If other researchers replicate the study -- a big if -- perhaps the findings will hold up.  Perhaps they will not.  But it is extremely premature to speculate on changes in diagnostic procedure on this basis of this one article.

Carrey, Autism, and Tuberous Sclerosis

Buzzfeed reports that Jim Carrey is digging himself a deeper Twitter hole:

On Wednesday, Carrey continued this message with a series of tweets that included photos of children with autism. One, showing an unnamed boy crying with his arms behind his head, read: “TOXIN FREE VACCINES, A REASONABLE REQUEST.”

The boy is 14-year-old Alex Echols of Eugene, Oregon. And his family is pretty annoyed with Carrey’s tweet.

“Jim Carrey has a huge platform — a huge following — and is misrepresenting my son’s image by attaching it to his anti-vax rant,” Alex’s mother, Karen Echols, told BuzzFeed News by email.

Alex was born with a genetic syndrome called tuberous sclerosis, or TSC, which causes benign tumors to grow all over the body, including the brain. Many children with TSC have autism, including Alex.

Alex lives in a group home. Echols and her husband, Jeremy, are open about his condition, maintaining a website, alexneedshelp.com, and a Facebook page to try toadvocate for the use of medical marijuana to calm his seizures, self-injurious behaviors, and anxiety.

At Forbes, Emily Willingham writes:

The condition gets its name from the potato (tuber)-like growths that develop in the brain, as visible on MRI, that eventually harden, or sclerose. It traces to two gene variants that result in the development of these benign growths in many tissues. ‘Benign’ references only the fact that they aren’t cancer—their effects are not benign, particularly in the central nervous system. While the effects can be mild, often the condition is associated with epilepsy, developmental delay, and … autism.

In fact, about a third to half of children who have tuberous sclerosis could also be diagnosed with autism. Each condition is associated with seizures, and there are hints that disrupted connections among brain regions might be responsible for both the seizures and the social communication deficits of autism.

It’s ironic that Jim Carrey, in his effort to argue a debunked link between vaccines and autism, accidentally drew attention to one of the few factors that have been strongly linked to autism. Some celebrities, however, such as Julianne Moore, were way ahead of the curve and have been working a little more deliberately to draw attention to tuberous sclerosis.

Carrey Tweets

In The Politics of Autism, I discuss a prominent anti-vaccine group:

The group gained a key supporter in actress Jenny McCarthy, who believed that vaccines had caused her own son’s autism. McCarthy, who had already gained a great deal of publicity for the vaccine theory by discussing it on the Oprah Winfrey show, became the group’s president. (It briefly called itself “Jenny McCarthy and Jim Carrey’s autism organization,” but the celebrity couple split in 2010.[i])

---

[i] John J. Pitney, Jr., “Gossip and Autism,” April 6, 2010.  Online: http://www.autismpolicyblog.com/2010/04/gossip-and-autism.html.

Alexander Smith reports at NBC:

Jim Carrey left his 14 million Twitter followers in no doubt about his feelings on California's tough new vaccination law on Tuesday.

The actor believes there is a link between vaccines and autism. He branded California Gov. Jerry Brown a "corporate fascist" after he signed into law one of the strictest immunization programs in the country earlier in the day.

In a series of more than half a dozen tweets that ended in a flurry of capital letters, the Golden Globe winner insisted he was "pro-vaccine." He was only "anti-neutrotoxin," he said, repeating his claim that ingredients such as thimerosal and mercury carry a risk to children.

The FDA explains:

Thimerosal has been removed from or reduced to trace amounts in all vaccines routinely recommended for children 6 years of age and younger, with the exception of inactivated influenza vaccine (see Table 1). A preservative-free version of the inactivated influenza vaccine (contains trace amounts of thimerosal) is available in limited supply at this time for use in infants, children and pregnant women. Some vaccines such as Td, which is indicated for older children (≥ 7 years of age) and adults, are also now available in formulations that are free of thimerosal or contain only trace amounts. Vaccines with trace amounts of thimerosal contain 1 microgram or less of mercury per dose.