ASF Lobbyist Argues for "Profound Autism" Designation

 In The Politics of Autism, I write:

The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a  disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”

Craig Snyder, former chief of staff to Sen. Arlen Specter and lobbyist for the Children’s Health Act of 2000 and the Combating Autism Act of 2006, at The Hill: 

By 2014, the Combatting Autism Act couldn’t be reauthorized without changing its name to the Autism CARES Act, a piece of Orwellian language that marked a radical shift in the policy the law was intended to codify.

Kids who can’t speak, many with severe intellectual disability and serious physical health problems, and their families, are aggregated in popular culture with celebrities who sometimes self-diagnose as autistic —even as they suffer undiagnosed physical pain (for example, from GI disease) or seizures, often “treated” with completely inappropriate anti-psychotic medications and leather restraints, confronted by and harmed by police without training in their special needs, or as they wander into harm’s way or accidental deaths.

If someone had told me that in 2023 sufficient resources would not have been mustered to determine the basic biology of profound autism and to turn understanding of causation into medical treatments, and that those awaiting breakthroughs would have such a pathetic infrastructure of services, I simply would not have believed it. That is why I’ve rejoined this cause as lobbyist for the Autism Science Foundation.

...

The Autism Act is again coming up for reauthorization, allowing accountability for taxpayer dollars and learning from experience about policies’ effectiveness.

The millions who love someone afflicted with profound autism will advocate for people who cannot speak for themselves, insisting that the Congress and President Biden make the crucial distinction between profound autism and the neurodiversity represented by ASD self-advocates, and, with respect to profound autism, recommit to combatting it and seeking its ultimate cure.

Profound Autism and Prevalance

 In The Politics of Autism, I write:

The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a  disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”

Mike Stobbe at AP:

As autism diagnoses become increasingly common, health officials have wondered how many U.S. kids have relatively mild symptoms and how many have more serious symptoms, such as very low IQ and inability to speak.

A first-of-its-kind study released Wednesday shows the rate of such “profound” autism is rising, though far slower than milder autism cases.

“It’s very important to know how many people have profound autism so that we can properly prepare for their needs,” including more health and education services, said Alison Singer, executive director of the advocacy and research group Autism Science Foundation.

At Public Health Reports,  Michelle M. Hughes and colleagues have an article titled "The Prevalence and Characteristics of Children With Profound Autism, 15 Sites, United States, 2000-2016

Abstract

Objectives:

Autism spectrum disorder (autism) is a heterogeneous condition that poses challenges in describing the needs of individuals with autism and making prognoses about future outcomes. We applied a newly proposed definition of profound autism to surveillance data to estimate the percentage of children with autism who have profound autism and describe their sociodemographic and clinical characteristics.

Methods:

We analyzed population-based surveillance data from the Autism and Developmental Disabilities Monitoring Network for 20 135 children aged 8 years with autism during 2000-2016. Children were classified as having profound autism if they were nonverbal, were minimally verbal, or had an intelligence quotient <50.

Results:

The percentage of 8-year-old children with profound autism among those with autism was 26.7%. Compared with children with non–profound autism, children with profound autism were more likely to be female, from racial and ethnic minority groups, of low socioeconomic status, born preterm or with low birth weight; have self-injurious behaviors; have seizure disorders; and have lower adaptive scores. In 2016, the prevalence of profound autism was 4.6 per 1000 8-year-olds. The prevalence ratio (PR) of profound autism was higher among non-Hispanic Asian/Native Hawaiian/Other Pacific Islander (PR = 1.55; 95 CI, 1.38-1.73), non-Hispanic Black (PR = 1.76; 95% CI, 1.67-1.86), and Hispanic (PR = 1.50; 95% CI, 0.88-1.26) children than among non-Hispanic White children.

Conclusions:

As the population of children with autism continues to change, describing and quantifying the population with profound autism is important for planning. Policies and programs could consider the needs of people with profound autism across the life span to ensure their needs are met.

From the article:

Among the 20 135 children aged 8 years with autism in the 2000-2016 surveillance years, approximately 27% overall met the case definition of profound autism. In 2016, the most recent surveillance year, the prevalence of profound autism was 1 in 218 children aged 8 years. To our knowledge, this study is the first US population-based study quantifying the prevalence and describing the characteristics of the population with profound autism. This analysis used data from a long-running surveillance system for autism in the United States, allowing profound autism to be quantified in a well-described cohort of school-aged children. It is important to identify these children because they are underrepresented in autism research and intervention studies and generally have the greatest need for services and supports. Children with profound autism may have considerable medical complexity and likely may not be able to live independently or perform tasks of daily living as they age.15,16 It is essential that policies, programs, and resources are tailored to the profound autism population across the life span to ensure their needs are met.

While the prevalence of both profound and non–profound autism increased over time (2000-2016), the increase was greater for non–profound autism (from 1 in 254 to 1 in 70 children aged 8 years) than for profound autism (from 1 in 373 to 1 in 218 children aged 8 years); while attenuated, this trend remained when we used the 2002 study year as the starting reference point. This finding suggests that the composition of the identified autism population changed as the overall identified autism prevalence increased.

 

RFK Jr. Officially Announces

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Antivaxxers are sometimes violent, often abusive, and always wrong.  

A leading anti-vaxxer is Robert F. Kennedy, Jr. 

He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.

Trip Gabriel at NYT:

More than half a century after his father sought the White House to end a calamitous war in Vietnam and to salve the country’s racial wounds, Robert F. Kennedy Jr. announced a presidential campaign on Wednesday built on re-litigating Covid-19 shutdowns and shaking Americans’ faith in science.

,,,

While polls show that up to half of Democrats want someone besides Mr. Biden as their 2024 nominee, no party leader has stepped up with a challenge, and past opponents have rallied to the president’s side. Mr. Kennedy is the latest in a history of fringe presidential aspirants from both parties who run to bring attention to a cause, or to themselves.

For Mr. Kennedy, that cause is vaccine skepticism, which he cloaked in terms of truth-seeking and free speech, a crusade that in the past led him to falsely link childhood vaccines to autism. At the height of the Covid-19 pandemic, he sought to undermine public trust in vaccines, comparing government efforts to impose mandates in some places to “Hitler’s Germany.” Both Facebook and Instagram took down accounts of a group he runs for spreading medical misinformation.

Autism Society Applauds Biden Disability Actions

 In The Politics of Autism, I write about social services, special education and the Individuals with Disabilities Education Act. 

 From the Autism Society:

Affordable, accessible, quality child care and respite services are essential to give families the support they need. The Autism Society prioritizes advocating for additional funding for Medicaid-funded home and community-based services.

“Our community-based service system is in crisis. Many Autistic individuals want to live at home or in their community with support, but funding has not kept up with the needs of families,” stated Christopher Banks, President and CEO of the Autism Society of America. “Parents often care for their adult children until they need support themselves.”

The bipartisan Better Care Better Jobs Act, introduced in both the House and Senate, would increase access to personal care services, family supports, community behavioral health services and expand eligibility requirements. It would also facilitate greater coordination with employment, housing and transportation supports. An independent analysis estimates the bill would provide enough funding to enable 3.2 million more individuals to receive services.

The President’s Budget also includes $150 billion over the next decade to improve and expand Medicaid home care services—making it easier for people with disabilities to live, work, and participate in their communities.

Banks continued, “We applaud President Biden’s actions and urge Congress to pass the Better Care Better Jobs Act to support families with disabilities.”

Next week, the Autism Society is co-sponsoring the Disability Policy Seminar, along with several other major disability organizations. The annual seminar includes a day on the Hill where people with disabilities, family members, and professionals will urge Congress to support the President’s Budget and legislation, such as the Better Care Better Jobs Act, to address waiting lists and raise wages for direct care workers.

Duke and Stem Cells

In The Politics of Autism, I write:

The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage.

Anna Merlan at Vice:

For several years, parents of autistic children have paid between $10,000 and $15,000 to have their children undergo unproven stem cell and cord blood treatments at Duke University, through what’s called an expanded access program, or EAP. That practice has attracted criticism from observers and ethicists in the stem cell field, who have asked why Duke was charging money for a service when its own clinical trials have not been very promising. In recent months, Duke has sent letters informing parents that this program is no longer available to autistic children—raising new questions about what those parents, who’d been led to believe the treatment might be a panacea for their kids, will do instead.

One of the more urgent questions is whether parents who can’t access the treatment though Duke will instead go to a for-profit partner with ties to the school. That would be Cryo-Cell International, which previously announced that it had entered into a licensing agreement with Duke allowing it to offer the same stem cell infusions in private, for-profit clinics the company has said it plans to begin opening this year. (Duke previously told Motherboard that “the licensing agreement does not grant Cryo-Cell the use of Duke’s EAP for the treatment of patients at Cryo-Cell, but will allow Cryo-Cell to develop its own cell therapy program.”)

Kennedys v. RFK Jr.

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Antivaxxers are sometimes violent, often abusive, and always wrong.  

A leading anti-vaxxer is Robert F. Kennedy, Jr. 

He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.

Edward-Isaac Dovere at CNN reports on the Kennedy family's attitude toward RFK Jr.'s presidential candidacy.

Robert F. Kennedy Jr.’s campaign challenging President Joe Biden for the Democratic nomination – set to be announced Wednesday in Boston – is too much for a family that defined the modern Democratic Party. They’re frustrated, sad and completely opposed.

They say they love him. They use words like “heartbroken” and “tragic.”

It’s the vaccine skepticism, which includes a book about “The Real Anthony Fauci” and saying Anne Frank was better off than Americans under supposed vaccine mandates because she could at least hide from the Nazis. It’s insisting that Sirhan Sirhan didn’t actually shoot Kennedy’s father, and breaking with many in the family years ago to argue for the assassin’s parole. Now, it’s going up against a president whose administration is stocked with Kennedys in prominent positions and who has decades of personal and emotional connections to multiple members of the family.

...
“Which brother?” Chris Kennedy, a former gubernatorial candidate in Illinois, joked when asked by CNN about his thoughts on his brother’s campaign.

“This is a difficult situation for me. I love my older brother Bobby. He has extraordinary charisma and is a very gifted speaker,” Rory Kennedy, the filmmaker and youngest child of Robert F. Kennedy, told CNN. “I admire his past work as an environmentalist – because of him, we can swim in the Hudson. But due to a wide range of Bobby’s positions, I’m supporting President Biden.”

“I prefer not to talk,” texted Kathleen Kennedy Townsend, the former Maryland lieutenant governor who’s now an adviser on retirement at the Labor Department, when asked about the frustration within the family about her brother’s run.

Asperger and Other Labels Are Controversial

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.

The term "Asperger Syndrome" is falling into disuse because of changes in the DSM and revelations that Hans Asperger was a Nazi collaborator.

 Zoë Corbyn at The Guardian:

Autistic Not Weird’s [Chris] Bonnello periodically surveys the autistic community on a range of autism-related issues (his 2022 survey had more than 11,000 respondents, mostly from the UK and US, about two-thirds of whom were autistic). While in 2018 about 51% said they used Asperger’s syndrome in relation to their own personal situation or when discussing autism, in 2022 it had plummeted to under 19%. The Hans Asperger revelations occurred between the surveys, notes Bonnello, and while it isn’t personally why he moved away from Asperger’s, it was likely a big driver.

...

Yet while many self-advocates now embrace life on the spectrum, there are different views among experts about whether things are working quite as they should, and how to fix them. One issue is whether people who would have been diagnosed with Asperger’s previously are falling through the cracks under the new system. Fred Volkmar, a professor of child psychiatry at Yale University, led the group that first introduced Asperger’s under DSM-IV. (He was originally on the DSM-5 group but resigned over process issues.) A specific problem Volkmar still sees a decade on is that the definition of ASD was effectively made more stringent under DSM-5 – and people at the margins, who might have qualified for Asperger’s or atypical autism, are missing out on a diagnosis as a result. Those people need identifying too so they can get support. The reduction rate in diagnosis under DSM-5 for those with Asperger profiles was recently estimated, based on a meta-analysis of studies, to amount to about 23% – though Volkmar thinks the number is likely to be higher.

Yet Catherine Lord, a professor of psychiatry at UCLA, who was on the DSM-5 group, disputes that a significant minority of people are getting lost. The reality of DSM-5, she says, is that it simply just isn’t very specific. Symptoms, for example, don’t even have to be current (they can be historic). “Almost all of us, by history, would meet some of the criteria for autism,” she says.

“If people are slipping through the cracks, then other people are slipping in,” says Francesca Happé. Diagnosis rates have increased exponentially over the past 20 years in the UK, she says, with the biggest increases in women and people over the age of 19. And the best interpretation isn’t that DSM-5 has necessarily changed much but that diagnosis is being more widely applied and there’s a historical backlog (in the past, adult diagnosis was uncommon and it was seldom considered that women could have Asperger’s or autism)

Los Angeles Sheriff Training About Autism

In The Politics of Autism, I discuss interactions between police and autistic people.  When cops encounter autistic people they may not respond in the same way as NT people, and things can get out of hand. Among other things, they may misinterpret autistic behavior as aggressive or defiant, and respond with tasers, batons, chokeholds, or worse.

Posts have discussed incidents in the following places:

• Orlando
• Richmond, VA
• Jackson County, KS
• Glynn County, GA
• Douglas County, CO
• Graymoor-Devondale, KY
• Vacaville, CA
• Metrairie, LA
• Salt Lake City
• Statesville, NC
• Buckeye, AZ

This list is not exhaustive.  Indeed, it does not even scratch the surface.

Police training could be helpful, but we also need programs to evaluate the implementation and effectiveness of the training.

Jessica DeNova at KABC-TV:

Some members of the Los Angeles County Sheriff's Department participated in an immersive experience to prepare themselves to better handle people with autism and developmental disabilities when on a call for service.

The training was put together by the city of Industry, along with Kate Movius of Autism Interaction Solutions. Movius has first-hand experience because her own son is on the spectrum.

"If there's one thing you take away from the training today it is that you take your time, if it's tactically permissible, and safe for you, to slow way down," said Movius.

Kits that included items such as noise-canceling ear muffs and white boards were given to participants to help them better communicate with someone with autism.

People living with autism also spoke and gave testimonials on their interactions with law enforcement.

Torture and Murder

In The Politics of Autism, I write:

People with disabilities are victims of violent crime three times as often as people without disabilities. The Bureau of Justice Statistics does not report separately on autistic victims, but it does note that the victimization rate is especially high among those whose disabilities are cognitive. A small-sample study of Americans and Canadians found that adults with autism face a greater risk of sexual victimization than their peers. Autistic respondents were more than twice as likely to say that had been the victim of rape and over three times as likely to report unwanted sexual contact.

Previous posts have discussed parents and caregivers who have killed or tried to kill their ASD children. 

Jerry Lambe at Law and Crime:

An incensed judge excoriated the woman convicted of murdering her 8-year-old stepson by forcing him to sleep in an unheated garage in the winter, calling her “evil” and saying that the maximum sentence of 25 years to life wasn’t a harsh enough punishment for the “torture” she inflicted on her stepchildren.

Angela Pollina, 45, had witnessed her husband Michael Valva turn a hose on young Thomas Valva before forcing him to sleep in the garage of their Long Island home in January of 2020. As temperatures dropped to 19 degrees Fahrenheit, Thomas eventually froze to death.

“I’ve had the opportunity to visit the prison where you’ll be sent,” Judge Timothy Mazzei said during Polina’s sentencing hearing on Tuesday. “My only regret, Ms. Pollina, is that they don’t have a garage there with no heat, and no mattress, and no blankets, and no pillows, and […] nothing that belongs in a bedroom. So you could sleep [there] for the rest of your life. Because that’s where you deserve to be for the rest of your natural life.”

A Suffolk County jury last month found Pollina guilty of second-degree murder and child endangerment for the death of her stepson. Thomas died of hypothermia after Pollina and Valva forced him and his 10-year-old brother Anthony Valva to sleep on the concrete floor of the garage after their father sprayed them with a hose. The torturous treatment was meant to punish Thomas, who had autism, for soiling himself.

Michael Valva, a former NYPD police officer, received the same sentence — 25 years to life — in December for his role in his son’s death.

Autistic Adolescents

In The Politics of Autism, I write:

Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs. Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.

At The Journal of Adolescent Health, Michelle M. Hughes and colleague have an article titled "
Adolescents With Autism Spectrum Disorder: Diagnostic Patterns, Co-occurring Conditions, and Transition Planning  Abstract:

Purpose

The objectives of this study were to describe child characteristics associated with later autism spectrum disorder (ASD) identification and the health status and educational transition plans of adolescents with ASD.

Methods

Longitudinal population-based surveillance cohort from the Autism Developmental Disabilities Monitoring Network during 2002–2018 in five catchment areas in the United States. Participants included 3,148 children born in 2002 whose records were first reviewed for ASD surveillance in 2010.

Results

Of the 1,846 children identified in the community as an ASD case, 11.6% were first identified after age 8 years. Children who were more likely to have ASD identified at older ages were Hispanic; were born with low birth weight; were verbal; had high intelligence quotient or adaptive scores; or had certain co-occurring neuropsychological conditions by age 8 years. By age 16 years, neuropsychological conditions were common with more than half of the adolescents with ASD having a diagnosis of attention-deficit/hyperactivity disorder or anxiety. Intellectual disability (ID) status was unchanged for the majority (>80%) of children from ages 8–16 years. A transition plan was completed for over 94% of adolescents, but disparities were observed in planning by ID status.

Discussion

A high percentage of adolescents with ASD have co-occurring neuropsychological conditions, markedly higher than at age 8. While most adolescents had transition planning, this occurred less often for those with ID. Ensuring access to services for all people with ASD during adolescence and transition to adulthood may help to promote overall health and quality of life.

RFK Jr, Campaign

 In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Antivaxxers are sometimes violent, often abusive, and always wrong.  

A leading anti-vaxxer is Robert F. Kennedy, Jr. 

He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.

 Eli Yokley at Morning Consult:

President Joe Biden maintains a formidable lead among the potential Democratic primary electorate following the entrance of Robert F. Kennedy Jr., an anti-vaccine activist who is former President John F. Kennedy’s nephew, according to a new Morning Consult survey...Seven in 10 potential Democratic primary voters said they would support Biden for re-nomination, while 10% said they would vote for Kennedy and 4% said they would back self-help author Marianne Williamson, according to the April 7-9 survey.

Laura Romero at ABC:

Kennedy, the son of former U.S. Attorney General Robert F. Kennedy, has become one of the most prominent faces of the anti-vaccine movement, according to experts. He is the founder of Children's Health Defense, a nonprofit organization known mainly for its anti-vaccine efforts. The group was kicked off Instagram and Facebook last year for spreading misleading claims about vaccines and other public health measures.

During the COVID-19 pandemic, the organization's revenues doubled to $6.8 million, according to filings made with charity regulators.

Kennedy's bid for the presidency "puts science squarely on the ballot," said Brian Castrucci, president of De Beaumont Foundation, a group dedicated to advancing public health policy. "His campaigns make the benefits of vaccines a question up for debate rather than settled science."

"His campaign would platform a set of dangerous beliefs with the possibility of not only harming the health of the public but the health of our communities and economy as well," Castrucci told ABC News. "We would have a candidate who each day would be spreading scientific misinformation and, in the process, legitimizing vaccine hesitancy and resistance."

 

Diagnosing Girls

In The Politics of Autism, I discuss gender differences in autism identification.

Azeen Ghorayshi at NYT:

In 2012, the Centers for Disease Control and Prevention estimated that boys were 4.7 times as likely as girls to receive an autism diagnosis. By 2018, the ratio had dipped to 4.2 to 1. And in data released by the agency last month, the figure was 3.8 to 1. In that new analysis, based on the health and education records of more than 226,000 8-year-olds across the country, the autism rate in girls surpassed 1 percent, the highest ever recorded.

More adult women like Dr. [Morénike Giwa] Onaiwu are being diagnosed as well, raising questions about how many young girls continue to be missed or misdiagnosed.

...In a 2017 review of dozens of studies, researchers from Britain estimated that the true sex ratio was closer to 3 to 1. Some online surveys that include people who have self-diagnosed show an even lower skew of males to females.

 

Argument Against Autism Acceptance

 In The Politics of Autism, I write:

The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a  disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”

Dawn Kovacovich at Minneapolis Star-Tribune:

We adore our autistic daughter exactly as she is. But that doesn't mean we would wish on anyone the heartache, frustrations and limitations she lives with on a daily basis as a result of her condition. She often says she "wishes there were a cure for OCD and autism." Could there be a cure for the neurological dysfunction that causes her brain to cycle in circles and short-circuit into violent tantrums? Maybe there could be. We might never know if funding for autism research is stymied because a certain subset of autistic individuals do not wish to acknowledge it as a disability.

The staggering increase of autism should be great cause for alarm. Research, prevention and programming are seriously affecting by the dismissive tone that AUSM has adopted toward the seriousness of this condition. I am, quite frankly, disgusted by this attitude. AUSM is no longer advocating for half of the very people it claims to serve. While we accept our daughter, we will never "accept" autism — or any other developmental disability.

The National Council on Severe Autism (NCSA) recognizes this. It is long past time to separate the diagnosis of mildly autistic people, whose brain structures more closely resemble ADHD, with those who have been born with profound autism. It is time to recognize that one size does not fit all.