Sad but true: "Disability" usually excludes us

SEVERE AUTISM = When you are too over-the-top disabled to qualify for almost all disability programs or housing.

How Many Broken Bones Is Enough?

By Duane Sloane

The worst is the passive aggressive guilt placed on parents when they become so overwhelmed they can no longer handle their child at home.

To those who may be among those who judge let me ask you: How many broken bones is ok? How many times should it be ok to be punched, pinched, purposefully vomited on?

How long should the siblings not be ever able to have friends over or sleep through the night? What’s the cutoff number for punching your six year-old brother?

Is there any PTSD involved for the rest of the family? How about the 11 year-old sister who is just used to the idea that her 16 year-old brother randomly strips naked and walks around naked, sometimes with an erection before we see him?

I contend that there are more selfish things than residential care. Like a lifetime of scars for everyone else to deal with as well. A fully staffed, well run residential facility is not a punishment to our children. It’s a decision filled with guilt and self-doubt.

But for those truly severe and beyond the cute toddler stage it is a heart wrenching sometimes necessary decision. Unless you have dealt day-to-day with violent severe autism in an adolescent, maybe reserve judgment. In fact just reserve judgment regardless.

There’s enough guilt already.

Severe Autism Needs "Institutions"

Severe Autism Needs “Institutions”

“Institution” can mean: “a facility where disabled people live in a confined setting, segregated from society, and without consent.”

But “institution” can also mean: “an organization that serves an important public purpose or societal need.” 

Harvard is an “institution”
The YMCA is an “institution”
Mayo Clinic is an “institution”
St. Jude’s Hospital is an “institution”
The local high school is an “institution”

Those who attack autism-serving programs as “institutions” are not really anti-institution. They are just invoking a bogeyman to de-fund your essential disability services.

Don’t be fooled. High-quality “institutions” (the second type) devoted to the well being of the severely autistic —whether providing day programs, housing or medical care, whether in the “community” or in their own buildings, whether small or big — are exactly what we need.

NCSA Public Comment for IACC Meeting, July 2021

After a two-year hiatus, the federal Interagency Autism Coordinating Committee is set to meet later this month. As a public comment NCSA submitted the following letter (here as a PDF).

Interagency Autism Coordinating Committee
National Institute of Mental Health
Via email: IACCPublicInquiries@mail.nih.gov

Re: Priorities for the federal response to autism

July 1, 2021

To the IACC members:

The National Council on Severe Autism, an advocacy organization representing the interests of individuals and families affected by severe forms of autism and related disorders, thanks you for your service to the IACC in effectuating the congressional mandate to further federally funded autism-related research and programs, and ultimately improve prospects for prevention, treatment and services.

Dramatically increasing numbers of U.S. children are diagnosed with — and disabled by — autism spectrum disorders. In the segment we represent, those children grow into adults incapable of caring for themselves and require continuous or near-continuous, lifelong services, supports, and supervision. Individuals in this category exhibit some or all of these features:

• ï Nonverbal or have limited use of language

• ï Intellectual impairment

• ï Lack of abstract thought

• ï Strikingly impaired adaptive skills

• ï Aggression

• ï Self-injury

• ï Disruptive vocalizations

• ï Property destruction

• ï Elopement

• ï Anxiety

• ï Sensory processing dysfunction

• ï Sleeplessness

• ï Pica

• ï Co-morbidities such as seizures, mental illness, and gastrointestinal distress

Given the immense and growing burden on individuals, families, schools, social services and medical care, the autism crisis warrants the strongest possible federal response. Parents are panicked about the future. Siblings are often terrified about having children of their own, and/or the burden of providing lifelong care for their very much loved but highly challenging brothers and sisters. Schools cannot recruit enough teachers and staff to keep up with growing demand. Adult programs and group homes refuse to take severe cases. Vastly more must be done to both understand the roots of this still-mysterious neurodevelopmental disorder and to prepare our country for the tsunami of young adults who will need care throughout their lifetimes, particularly as their caring and devoted parents age and pass away.

With that in mind, we ask the members of the IACC to understand the priorities of our community. While this list is not exhaustive it represents many of the issues our families consider most urgent.

In the course of committee deliberations:

The amorphous word “autism” should never obscure the galactic differences among people given this diagnosis. The construct of “autism” — and it is just that, an artificial human invention contorted by political and historical forces — has thrown together into one bucket abnormal clinical presentations that often have nothing in common. A person in possession of intact cognitive abilities and/or adaptive functioning who suffers from social anxiety and sensory processing differences has no meaningful overlap with a person with severe intellectual impairment, little to no adaptive skills, and aggressive behaviors. The IACC should take care to make distinctions at every juncture where “autism” is invoked in a general way.

Zero tolerance for anti-parent prejudice. It has been alarming to witness the re-emergence of parent-blaming in some sectors of the autism community. Parents provide the lion’s share of support for both children and adults with autism and have been at the forefront of reforms aimed at improving the lives of those disabled by autism. Parents also most reliably speak out on behalf of the best interests of their non- or minimally verbal children. We ask that the attitude of the IACC be one of zero tolerance for the disturbing trend of anti-parent prejudice. 

Honest language to communicate realities. It is crucial that discussions at the federal level retain the language the reflects our clinical and daily realities, such as the following examples we commonly hear from our families and practitioners: abnormal, maladaptive, catastrophic, chaos, low-functioning, suffering, devastating, panicked, hopeless, desperate, exhaustion, overwhelming, anguish, traumatic, bankrupting, financially crushing, suicidal, epidemic, tsunami. We stress this not to detract from the many positives found in every person disabled by autism, of course those also exist, but to ensure that the challenges of autism are never semantically erased.

As federal priorities are developed:

The ever-increasing prevalence of autism must be treated with the utmost gravity. Rates of autism that meet a strict definition of developmental disability have soared 40-fold in California over the past three decades. Rates of autism now exceed 7% in some school districts in New Jersey. There is overwhelming evidence for growing rates of disabling autism, and little evidence this has been caused by non-etiologic factors such as diagnostic shifts. We have both a pragmatic and moral duty to discover the factors driving this alarming, unprecedented surge in neurodevelopmental disorders among our youth and young adults. Clearly, vaccines and postnatal events are not responsible for the surge in autism, but many other factors warrant urgent attention so we can finally “bend the curve” of autism.

Maximizing the range of options available to our disabled children and adults. We need a broad range of educational, vocational and residential services to meet the very diverse needs and preferences of the autism population — and this includes specialized and disability-specific settings that are are equipped to handle the intensive needs posed by severe autism. The post-21services “cliff” is a gut-punching reality across our country. Lack of non-competitive employment options. Lack of day programs. Few or no housing options. No HUD vouchers. Little to no crisis care. A healthcare system and ERs utterly unprepared for this challenging population. Aging parents. Lack of direct support providers. Lack of agencies willing to take hard cases. All of this amounts to a nightmare for our individuals and families. Clearly, massive policy changes are needed across multiple domains to maximize options for this growing population.

A desperate need for treatments. Regrettably, the therapeutic toolbox we have today is largely the same as two decades ago. While a cure for autism is unlikely to ever arise owing to the early developmental nature of the disorder, the IACC should push for research on potential therapeutics that can mitigate distressing symptoms such as aggression, self-injury, anxiety, insomnia, and therefore improve quality of life while decreasing the costs and intensities of supports. The research may include medical treatments such as psychopharmaceuticals, cannabis products, TMS, and others, as well as non-medical approaches.

We appreciate this committee’s commitment to autism prevention, treatment and services, and for your consideration of our community’s priorities.

Very truly yours,

Jill Escher
President