NCSA Publishes Position Statement on Facilitated Communication

Below is the text of a new Position Statement published by the National Council on Severe Autism urging caution with respect to the authenticity of communications generated via the use of “facilitated” techniques. NCSA strongly supports the wide variety of independent communication efforts by all with autism but is concerned about the rising popularity of several non evidence-based modalities that depend on the support of an intermediary to generate output. For more information regarding Facilitated Communication and related approaches, in addition to evidence-based practices, please review our recent webinar on the topic here.

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NCSA Position Statement on Facilitated Communication

NCSA enthusiastically supports efforts to improve independent communication by all those with severe autism, whether the communication is verbal, gestural, written, or through devices such as Alternative and Assistive Communication (AAC) technologies or a keyboard. We cannot support, however, a technique known as Facilitated Communication (FC). The American Speech-Language-Hearing Association (ASHA) defines FC as “a technique that involves a person with a disability pointing to letters, pictures, or objects on a keyboard or on a communication board, typically with physical support from a ‘facilitator.’” This support can take the form of touching the body directly (typically the hand, wrist, elbow or shoulder) or merely holding the letterboard. Studies dating back to the 1990s have repeatedly demonstrated that the products of FC reflect the (often non-conscious) control of the facilitator and do not represent authentic communication by the disabled person. At times, false statements generated by FC practitioners have resulted in devastating outcomes, including false accusations of abuse against parents and others.

For these reasons, NCSA joins ASHA, the American Academy of Child and Adolescent Psychiatry, the American Academy of Pediatrics, the American Association on Intellectual and Developmental Disabilities, the American Psychological Association, the Association for Science in Autism Treatment and over a dozen other national and international organizations in opposing the use of FC.

We also urge caution with regard to newer variants of FC such as the Rapid Prompting Method (RPM) and Spelling to Communicate (S2C). Like FC, these methods rely on the intervention of a partner to facilitate the communication, and therefore carry the risk of conscious or unconscious prompting by the intermediary. Although practitioners regularly contend the output is the independent work of the persons being facilitated, we are concerned that to date no reliable research has confirmed the authenticity of the communications and that practitioners have systematically resisted calls for simple, straightforward verification studies. Such studies would include message-passing tests, where the disabled person is asked to produce information or answer questions the facilitator does not know the answers to, or tests where the facilitator was blinded. While NCSA does not oppose advances in any therapeutic field, we also ask that such advances be evidence-based, and subject to reasonable scientific scrutiny, especially given the tragic history of dangerous and ineffectual interventions of the past, including FC. 

Recently, advocates have begun conducting and publishing studies that claim to prove the legitimacy of letter boarding with technologies such as eye-tracking devices, accelerometers, and electroencephalography (EEG). Orthodox speech and language researchers consider the use of such elaborate and marginally relevant technologies a distraction from the fact that practitioners refuse to submit RPM and S2C to basic validity testing. They are also concerned about advocates’ claims that autism is a motor, not cognitive, disorder, which has no support in the research literature, and that people with autism have normal cognition but suffer from short-term memory loss precluding them from participating in such tests. 

Additionally, autistic voices are frequently cited as valid sources of representation for use in scientific research and policy development on the federal, state and local levels. However, some of the voices that are alleged to be representative of autistics are actually facilitated through RPM or FC, and should not be presumed valid.

References:

In-depth analysis of FC literature: www.facilitatedcommunication.org.

American Speech Language Hearing Association, Facilitated Communication and Rapid Prompting Method: CEB Position
https://www.asha.org/ce/for-providers/facilitated-communication-and-rapid-prompting-method-ceb-position/

Donvan J, Zucker C. In a Different Key. 2016 Crown Publishers, New York. (See Chapters 33, 34 documenting past abuses of FC.)

Fein D, Kamio Y. Commentary on The Reason I Jump by Naoki Higashida. J. Developmental & Behavioral Pediatrics2014;33(8):539-542. (Here, paywalled but first page is available.)

Mostert M. Facilitated communication since 1995: a review of published studies. J Autism Developmental Disord. 2001;31:287–313. (The abstract reads: “Previous reviews of Facilitated Communication (FC) studies have clearly established that proponents' claims are largely unsubstantiated and that using FC as an intervention for communicatively impaired or noncommunicative individuals is not recommended. However, while FC is less prominent than in the recent past, investigations of the technique's efficacy continue. This review examines published FC studies since the previous major reviews by Jacobson, Mulick, and Schwartz (1995) and Simpson and Myles (1995a). Findings support the conclusions of previous reviews. Furthermore, this review critiques and discounts the claims of two studies purporting to offer empirical evidence of FC efficacy using control procedures.”)

Schlosser RW et al. Rapid Prompting Method and Autism Spectrum Disorder: Systematic Review Exposes Lack of Evidence. Review Journal of Autism and Developmental Disorders, 2019. https://doi.org/10.1007/s40489-019-00175-w. (The abstract reads: “This systematic review is aimed at examining the effectiveness of the rapid prompting method (RPM) for enhancing motor, speech, language, and communication and for decreasing problem behaviors in individuals with autism spectrum disorder (ASD). A multi-faceted search strategy was carried out. A range of participant and study variables and risk and bias indicators were identified for data extraction. RPM had to be evaluated as an intervention using a research design capable of empirical demonstration of RPM’s effects. No studies met the inclusion criteria, resulting in an empty review that documents a meaningful knowledge gap. Controlled trials of RPM are warranted. Given the striking similarities between RPM and Facilitated Communication, research that examines the authorship of RPM-produced messages needs to be conducted.”)

Adopted by NCSA Board of Directors, June 24, 2021

Daring a grocery trip with a profoundly autistic son

A mom must become a “special forces counter-insurgency specialist” to attempt some errands.

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By Leanne Morphet

It's been about two and a half months since I dared venture to go into the store with ZMan. Yesterday, he asked so nicely to go, so I once again channeled my inner Brené Brown, chose to live bravely, and did a trip at 5:05 (yes, the start of after work rush hour) to Wally's World.

So what necessitates these feelings of not wanting to bring my beautiful boy into a store? My child exhibits aberrant and challenging behaviors that seem to come out of nowhere, frequently manifesting themselves at stores, culminating in various forms of (usually mild) property damage.

The current terminology we use to label the most prominent of these challenging behaviors is "dumping." Zach is not throwing with force, nor trying to break these items that he "dumps." The objects of these behaviors range in shape, size and form from paper bags (the most innocuous of things to dump) to eggs (who can forget the Great Tops Christmas Eve Egg Break of 2018) to a one-time encounter (thankfully) of a shelf of ceramic mugs at Michaels.

When I am on one of these trips with Zach — I am nothing short of a special forces counter-insurgency specialist, coming up with a comprehensive plan to simultaneously defeat and contain the behaviors and address its root causes.

This means I have had to cultivate a strategy to include determining if he is about to have an episode, informing those around me what is happening, handling any needed compensation for any irrevocable property damage, and, of course, all while having to dynamically develop a clear exit strategy. A true balancing act when contemplated solo — as I now do as a single parent.

We enter the store, I then consider every environmental factor we encounter filtered through what I understand of his specific sensory profile of what may cause him distress or undue attention, which seems to help, but certainly not always predict when he is ready to strike, and always ready for me to counter strike if he should decide or react to these things.

This is no time for Leanne to be doing the family grocery shopping — one distraction of a special on Baby Bella Mushrooms for Momma and *BAM*, Zach could be found throwing a cantaloupe (midfield if we were out at the stadium) clearly into the cruciferous vegetable section of the produce aisle.

The stunned look of our senior citizen shoppers as a bag of oyster crackers is turned into large pieces of fun shaped baked flour confetti in just an instant has sworn me off eye contact of all sorts because the last thing I need to be is distracted by another person's reactions when having to make sure the shrapnel of these episodes is contained and that Zach is safe.

Oh there is so much more to share but I will leave you with this feel-good moment: as I left the store with ZMan pushing the cart to our very sexy minivan — I did the quarterback's touchdown dance in the parking lot and high-fived my boy.

We had left the building and no, nosiree-bob, security was not called. #Victory #HellYeahAutism.

Leanne Boulware Morphet is an autism mom and advocate living in Central New York, and can be found occasionally recording her escapades at indomitablespiritgoddess.blogspot.com.

#AutismAction — LifeTown: A Wonderland for Autism in New Jersey

A community center like no other opens in a state where childhood autism rates exceed 3%.

LifeTown offers life-skills programs, educational opportunities, sports, dance, music, theater and art, job training, and social activities.

LifeTown offers life-skills programs, educational opportunities, sports, dance, music, theater and art, job training, and social activities.

By Jonah Zimiles

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LifeTown is an extraordinary wonderland located in Livingston, New Jersey. Opened right before the onset of the pandemic, LifeTown is the culmination of a decade of dreams, planning and hard work, fulfilled by the creation of a 53,000 square foot fully inclusive and accessible center where everyone celebrates and experiences life together.  

LifeTown is the brainchild of Zalman and Toba Grossbaum, who run the Friendship Circle, an organization created to pair “typical” and special needs kids together as friends through the engagement in mutually enjoyable and rewarding activities. LifeTown goes beyond the original construct of the Friendship Circle to provide a myriad of exceptional experiences and opportunities for the entire community, and is designed to support individuals with a wide variety of special needs, including severe autism, throughout the lifespan.  

LifeTown offers life-skills programs, educational opportunities, sports, dance, music, theater and art, job training, and social activities. At the heart of LifeTown is its flagship program, “Lessons for Life.” Centered in LifeTown Shoppes—an indoor Main Street with shops, businesses and more—Lessons for Life allows students to practice their classroom lessons through real-world situations. With volunteers playing shopkeeper, banker, supermarket manager and more, students can work on their social skills, money and time management, communication skills and much more.

In 2009, my wife, Ellen, and I opened [words] Bookstore in Maplewood, New Jersey, to provide jobs and vocational training to individuals with autism. We are extremely proud to be among the founders of LifeTown and to have established our second branch on LifeTown’s Main Street. LifeTown has proved to be a great source of joy and training for Daniel, our adult son with autism. Visits to LifeTown have been limited by the pandemic, but we hope that you will come see LifeTown soon. For more information about LifeTown, please see LifeTown.com or email me at jonah@wordsmaplewood.com.

Jonah Zimiles is co-founder of [words] Bookstore and LifeTown, both in New Jersey.

"We want to tell you about our son and the severity of his challenges so you will understand why we support the NCSA comments"

The following letter was sent in response to the call for comments on the proposed HCBS Access Act. We encourage all autism families to submit their comments as well, to HCBSComments@aging.senate.gov, before the April 26 deadline. Details here.

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To:      The Honorable Senators Hassan, Brown, and Casey, and Rep. Dingell

Re:      Gabler Family Comments on the Discussion Draft of the HCBS Access Act (HAA)
We support comments of the National Council on Severe Autism (NCSA)

Date:   April 19, 2021

Dear Senators Hassan, Brown, and Casey, and Rep. Dingell:

Thank you for the opportunity to comment on the Discussion Draft of the Home and Community Based Access Act. We very much appreciate your efforts to improve the fragmented, difficult-to-navigate system of adult care of people with developmental disabilities. 

We are stakeholders. We have a 24-year old nonverbal son with severe autism. Douglas will require 24-hour care and skilled supervision for the rest of his life. 

We support in full the comments of the National Council on Severe Autism (NCSA). We respectfully request that you accept the recommendations of the NCSA to retain and expand services, facilities, and options for people with severe autism, and we enclose a copy of the NCSA comments with this letter. 

We also want to tell you about our son and the severity of his challenges so you will understand why we support the NCSA comments. 

Douglas is profoundly nonverbal. He cannot communicate anything about his needs, his wishes, or even his state of health. He is very difficult to care for because we never know if he is having a problem. Does he feel sick, tired, hungry, threatened? Has someone treated him badly? What happened today? We never know. You cannot imagine how difficult it is to care for someone when you have no idea of what he is feeling.

Douglas is prone to Self-Injury. This is a devastating behavior that is common among people with severe autism. When he is upset, he will bite his hands, hit himself on the side of his head, or punch himself in the nose. He has given himself black eyes. His hands have been so bitten up that he looks as though he were attacked by a coyote.

Self-violence unfortunately can lead to aggression against others. If he becomes that agitated, he may turn around and start hitting others. We have been hit, bitten, and pinched. Can you imagine how upset a person must be if he feels he has to engage in these behaviors to get his needs met?

Many people are surprised to hear that these behaviors are common among people with severe autism. That is why this group of people needs specialized supervision and a variety of options for their long-term care, as the NCSA comments explain. 

I cannot convey to you how much we fear for our son’s future after our deaths. Douglas is currently doing well because we (his mom and dad) provide “extraordinary care” around the clock, seven days a week. We also provide “informed care” because we have educated ourselves in the scientific principles of Applied Behavior Analysis (ABA), and we know how to maintain his good behaviors and increase his skills with positive reinforcement. 

Many people are surprised to hear that the use of scientific principles of positive reinforcement to increase learning and maintain good behavior is resolutely ignored by the American disabled adult care establishment. This determination to ignore the scientific principles of ABA terrifies us, because Douglas’s behavior would deteriorate within a week to unnecessary lows if he were in a “care” setting that had no tools other than commands, threats, and coercion. He would become violent in response to such a bad environment and would then be subject to abuse and chemical and physical restraints.

Douglas needs the following services in place to have even a chance at a safe and reasonably satisfying life after we die:

•  He must be in a setting that is designed, staffed, and managed by people who are trained in the principles of Applied Behavior Analysis (ABA), and who know how to use all the tools and procedures of that science to maintain his good behaviors and help him learn new skills. Currently it is extraordinarily difficult to access ABA for adults with severe needs.

•  He must be in a residential setting that has the professional skills to serve Americans with severe cognitive, functional and behavioral disabilities, and he needs access to Intermediate Care Facilities. The preferred “community” placement du jour – some isolated apartment with round-the-clock staffing from a constantly changing cadre of $15/hour aides -- would be a disaster for him; he would be beaten up or dead within a week.

Despite the severity of his autism, Douglas is a charming and cheerful young man who loves to go out and have a good time. If you have never met a person with severe autism and would like to meet Douglas, we are nearby, just across the district line. He is currently enjoying an excellent quality of life because of the care we provide, the training we give his aide, and the efforts we make to get him involved in activities that he enjoys. We desperately hope his quality of life will continue after we die. 

Once again, please come and visit. We can even bring him to you. He loves to ride the Metro.

Thank you for your time and attention. Thank you for learning about Douglas and the reasons we support the NCSA comments, and please, please call if you have any questions.

Sincerely,
Martha Gabler                                                                   
Mother and Legal Guardian of Douglas Gabler                     

Enclosure: Comments of the National Council on Severe Autism (NCSA), also online at https://www.ncsautism.org/blog//ncsa-comments-on-the-hcbs-access-act-proposal

#AcceptThis: Three Terrible Truths about Autism

Autism is a topic obscured by layers of myth, ideology, and delusion. To make progress, what we really need is not acceptance, but ACTION. That is, action based on reality.

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By Jill Escher

Some are calling April “Autism Acceptance Month.” Okay, I’m not sure why we should be so accepting of a devastating disorder that plunges ever-growing numbers of individuals and families into chaos, dysfunction, dependence and poverty, but hey, I can play this game too. 

If we are to “accept” autism, we should also be willing to strip away the nonsense — All with autism can gain competitive employment! Autism’s always been here but hiding under other labels! Autism is a gift! — and accept its painful truths. While Autism Month inanities endlessly pop up whack-a-mole style, I’ll discuss just three of the realities that require our full acceptance if we are to make true progress.

Terrible Truth #1: Autism is a scorching, catastrophic epidemic

It has become something like a religious dogma to blame autism’s explosive numbers on cultural factors like awareness and diagnostic shifts. Even USA Today recently reiterated the “nothing to see here” mantra in a sloppy piece (understandably) intending to refute the vaccine myth. While it’s obvious that vaccines have nothing to do with autism, it is equally true — and the evidence is painfully overwhelming — that we are nonetheless experiencing an unprecedented and torrential increase in serious neurodevelopmental pathology in our children.

The autism numbers are so horrific — edging toward 3% of all U.S. children, with no plateau in sight, up from .0466% in the 1960s according to a massive study of 30,000 children. That study found 21% of the 1960s autism cases had IQs in the normal range, and that if they used a more expansive definition including those with childhood schizophrenia and similar, the rate would have been .066% — nowhere near the 3% we’re seeing today in states like New Jersey and California. 

Prevalence of strictly defined autism has skyrocketed in California’s Department of Developmental Services system, up about 3,700% over 34 years.

Prevalence of strictly defined autism has skyrocketed in California’s Department of Developmental Services system, up about 3,700% over 34 years.

A new report on autism in California’s developmental services system (DDS), shows that strictly defined autism cases have climbed about 4,000% over the past three decades, with prevalence growing about 11% per year. About 1.5% of California’s 7-year-old children now have strictly defined autism. The special education data from that state suggests the broader definition autism is likely about double that.

Research has found that 59% of children diagnosed "not autistic" in the 1980s would meet today's criteria for ASD. Ok, I’ll take that, sure. Let’s attribute 59% of caseload growth to diagnostic modifications. Hey, let’s make it 100% just to be safe. What about the other 3,900%? Furthermore, repeated examinations of the DDS data have failed to show the caseload growth resulted from awareness, broadening diagnostics, or other factors like immigration. There is not an iota of evidence that our California DDS system has missed hordes of eligible autistic adults.

The CDC recently reported that in 2016 about 5% of all 8 year-old boys in New Jersey have autism, a horrific number that should send shockwaves around the country. And a new study has indicated that about 9% — 9%!!! —of all 8 year-olds in that state’s largest suburban school district have autism. Let me guess — even as special ed classes overflow with children with obvious learning and behavioral dysfunction we will continue, with no basis whatsoever, to blame diagnostic shifts.

Listen, part of me gets it. No one wants to feed the ridiculous antivaxx movement with alarming reports about ever-increasing prevalence. And who wouldn’t prefer a fairytale that autism is a benign difference rather than a serious disorder of brain development and behavior?

But unfortunately, no matter how we may try to justify the numbers with fluffy neurodiversity fantasies, the data are clear and unambiguous — we are suffering a monstrous epidemic, even if we don’t yet understand the causes of the dysregulated brain development at the core of autism. The disastrous long-term repercussions for our families and our society can hardly be fathomed.

Terrible Truth #2: Our country remains utterly unprepared for the tsunami of dependent young autistic adults

As we wallow in the toxic mudbath of epidemic denialism, we are squandering our pragmatic and moral imperative to invent an entire new system of supports for this unprecedented population of adults who cannot care for themselves. Instead of accepting reality, the popular refrain among mainstream advocates is that the answer is simple … drumroll please … “inclusion,” and to “living independently in the community”!

Ah yes, the Inclusion Delusion. Of course we want all people with disabilities to be free from discrimination and have as much access as possible to jobs, housing, and community activities. But here I borrow the immortal words of my late great friend Feda Almaliti, discussing her severely autistic son Muhammed (who perished with her in a house fire last year):

“I’m a realist, and Muhammed will never live independently in the community and I’m never going to be the next Beyoncé. So, if inclusion is the only answer for Muhammed, his future will look like today: isolated inside our house, with nowhere to go.”

Let’s get real. Inclusion is a soggy little band-aid on a gaping wound for most adults with severe autism. What they need most is a robust system of programs and supports catering to their wide variety of needs, along the full continuum of care. Instead, mainstream disability advocates routinely denounce autism-friendly programs and housing as “isolating” while promoting metrics that are utterly irrelevant to the person’s actual needs, well-being and quality of life.

While I would not suggest we need “Institutions” in the classic sense, I have no doubt we a vast network of “institutions” (small i) to cater to the growing needs. By these “institutions” I mean stable, strong nonprofits — I call them Essential Care Nonprofits — and other organizations that can provide wrap-around lifespan care across a wide array of settings. Think of the YMCA, Harvard University, Goodwill. These are all “institutions” serving important social needs, per the dictionary definition of a “significant organizations in a society or culture.” Where are the institutions capable serving the lifespan needs of the new throngs of severely disabled autistic adults? We must invent them, and fast.

Terrible Truth #3: Autism research, for all its blips of progress, has been a miserable failure

As a major proponent of autism research, this is a weird thing for me to say. But, honestly. What do we have to show for two decades of intensive research? Not much. Precious little understanding of causes, despite some nice progress in understanding neurobiological phenomena. No meaningful advances in terms of prevention. A bit of marginally helpful interventions. And pretty much the same basket of medical therapies we had when we started.

People might say, “But we’ve learned autism is genetic!” This is one of the nuttiest myths in autism. If you read the literature (as I do, obsessively), you will see that emphatically research has found autism is not genetic in any classic sense. Only about 10-15% of cases can be explained by genes, and a majority of those are not inherited from parents, but rather arise from newly occurring mutations. Plus a lot of those cases are syndromes that most people don’t really consider as autism as the primary diagnosis. Genetic research has also done nothing to translate into therapies. As Bryna Siegel, PhD has remarked in her book The Politics of Autism, the vast sum poured into genetics research “is unlikely to help any child with autism alive today.”

Then people might say, “But autism is strongly heritable — look at the heritability studies and recurrence rates among siblings!” This is indeed true. But there is no reason to think all this heritability has anything to do with common genes handed down through the generations. Instead, it is becoming increasingly clear that heritability can be the result of modern disruptions to the parental germline, something I have written about extensively in the scientific literature, for example here. But this topic remains sadly off-radar of mainstream autism labs, which seem intent on hunting down nonexistent or ultra rare variants of marginal relevance.

More importantly, we have seen little progress in terms of meaningful therapies. While behavioral approaches can be helpful in a subset of children and adults, particularly when it comes to making gains in circumscribed areas of pragmatic functioning, it is also routinely overhyped, particularly with regard to its efficacy in early intervention. Not a single medication has been seen to improve the core symptoms of autism (of course, it seems impossible to undo flawed hard-wiring of the brain). Cannabis is promising as a treatment for symptoms such as anxiety and aggression, but there is still little research and the medical establishment remains largely resistant. 

The current movement to “accept autism” defies all logic and sense of moral responsibility to our children and future generations. Acceptance is like throwing a beach pail of cool water on the inferno of troubles that lay ahead of us. Instead we need ACTION, a robust master plan for autism — to finally root out its causes, to find pathways toward prevention, to develop effective therapeutics and high quality lifespan care options. 

Jill Escher is President of the National Council on Severe Autism, a research advocate, a low-income housing provider for adults with autism, and the mother of two children with severe forms of autism.

Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.