Community Listening Session on Crisis Prevention and Intervention Services for Individuals with Developmental Disabilities with Severe Behaviors: New Report

An organization of parents, East Bay Parents Housing Network, which is associated with SFASA, received a grant from All In Alameda County to hold a listening session on crisis prevention and intervention services for individuals with developmental disabilities who exhibit extremely aggressive, self-injurious or destructive behavior. The session was held on December 10, 2016 in Alameda County.

Discussions have included concerns about the well-being of family members and other individuals whose needs for appropriate crisis intervention services are extreme but for whom services seem to be either denied due to the wrong diagnosis or not effectively targeted to their needs. The goal of the session was to hear from families of individuals with developmental disabilities who have severely aggressive, destructive, or self-injurious behaviors to better understand their experiences of crisis situations, the prevention and intervention services they have utilized, how effective those services have been, and what services or service improvements might be needed.

Lessons learned (from the report):

Participants described various facets of a crisis intervention system that is not effective in preventing or responding to severe behavioral crises such as violent aggression, self-injurious behavior or property destruction often exhibited by individuals with autism or other developmental disabilities. Although many of the crisis services described are helpful in some situations, they can only serve a limited range of abilities and behavioral challenges. An approach truly targeted to the specific emotional and behavioral needs of each individual with developmental disabilities is lacking but desperately needed. In its absence, families live in fear of extreme behavioral incidents and outcomes of physical injury for those involved, mistreatment by police, arrest, incarceration, or homelessness.

Participants found that the lack of appropriate, intensive, skilled supports in housing and daytime program settings leads to repeated behavioral incidents requiring emergency responses. The lack of appropriately trained and implemented emergency responses results in the individual entering one of two cycles of inadequate response, depending on the nature of the emergency and the attitude of the police involved. The individual may be taken through some version of the series of medical emergency room/medical hospital/psychiatric emergency room/psychiatric hospital/crisis stabilization. Or the individual may be arrested, incarcerated, have rights and advocacy access restricted, and go through a series of assessments and hearings while imprisoned, at times for years. When the individual leaves either of these two response paths, the initial reasons for the incident have rarely been changed and it is very likely that the cycle will be repeated.

The largest gain by participants in the session was the confirmation that many other families are experiencing similar challenges. When a family is trying to cope with a family member who frequently has severe behavior, the family can be very isolated as members simply try to make it through each day safely. It is extremely helpful to connect with other families with similar experiences, both for the emotional support as well as exchanging resource information.

Download the report.

By Regina Stoops

Most are aware that Sesame Street has a new Muppet with Autism named Julia. My first reaction to the news was a lean to the cynical side, a place where I admittedly spend time on occasion. My patience for what I’ll call Hollywood Autism has grown quite thin. The Hollywood Autism world is made up of quirky folks who’ve overcome and triumphed, they aren’t disabled they are just neurodiverse. Hollywood Autism usually involves a quirky, odd duck boy who’s well intentioned parents are at first in denial, then realization and then warrior mode where-by they fight the school, the doctors and anyone else who stands in the way of their child's success. The boy at some point will be a) bullied by classmates, b) misunderstood by his teachers and c) have a crush on a girl but not know to express this in a socially appropriate manner. There will be a crisis, a meltdown and then everyone, even the curmudgeon old grandpa who thought the kid was just a “rascal” will work together and march toward a brighter future. The boy will start to be accepted; the girl will smile and ask to sit with him at lunch. The whole thing will be topped off by his winning the school spelling bee, being voted Prom King and getting into college. Cue the credits.

I cringe when someone brings up Mozart or Einstein as examples of people with Autism. “Oh, your son has Autism; didn’t Einstein have that, is he good at math”? No, we don’t have that kind of Autism. He also cannot earn an income counting cards in Vegas as in Rain Man, but that portrayal is much closer to our reality. The Autism in our house is more run of the mill, less “Hollywood”. Our Autism is the “will my son have friends, get a job, move out, eat a new food without crying, be able to handle a change in routine, stop repeating videos and flapping” type. It’s messier and not as made for TV. I don’t begrudge anyone their triumph over life’s challenges but Autism comes wrapped in many packages. It just so happens our package doesn’t play as well for the cameras.

by Da Hae Kim

As the autism population has grown, so have the autism community’s scuffles with the law. Young men with autism get in skirmishes with police for innocently meant yet inappropriate sexual behavior. Impulsive adults on the spectrum throw tantrums and then get thrown in jail. A perseveration can be read as stalking or harassment, even if no harm is intended. What is an autism family to do to protect themselves from criminal involvement? Based on interviews with experts and advice from disability rights organizations, here are some things to consider. For more detailed information, please consult SFASA's Autism Civil Rights Project page here.

Sometimes people with ASD are taken advantage of by others looking to break the law. They may be asked to carry out criminal or dangerous activities, and lack the social sophistication to understand the nature of their actions, explained Jim Elliott MSW, Manager, Community Placement Program and Public Policy Compliance, San Andreas Regional Center. Extra precautions should be undertaken to prevent exploitation of vulnerable individuals.

People with ASD are much more likely to be the victim of a crime than being a perpetrator. According to Dr. Laurie Sperry of the Autism Forensics Project, people with ASD can be victimized more easily than others. Criminal acts by people with ASD, when they occur, are rarely because of the ASD but rather due to a comorbid mental condition that sometimes may occur.

People with intellectual and developmental disabilities are overrepresented in the criminal system. Experts say that with few community options for addressing dangerous or disruptive acts by individuals with ASD or I/DD, jails and prisons are often the default response, however unjust that may be. Recourse to the criminal system rather than diversion to an appropriate placement or treatment facility also can result from law enforcement’s and prosecutors’ lack of awareness and training around this issue and inability to accommodate through appropriate sentencing and sentencing alternatives.  Some court systems, such as the Mental Health Court in Santa Clara County, will consider diversion instead of incarceration of standard measures.

How the police treat individuals with ASD depends on many variables. There is considerable variability in terms of how much police are trained to recognize and interact with people with autism or intellectual and developmental disability. Sometimes, someone with ASD or I/DD is mistaken as being under the influence of drugs or alcohol. Police familiarity with particular individuals with I/DD can successfully promote preparedness and prevent escalation. Families should consider visiting the local police station to register background information about your disabled loved one. Also attend safety fairs and get to know local beat officers.

People with disabilities are equally subject to the criminal process. As Tom and Emily Iland explain in their March 30 webinar, there’s no autism exception in the criminal justice system. There’s one law, and it applies to all of us. Once the police get involved, they will not release your loved ones merely because of a diagnosis of autism or any other disability, though the issue of competency and intent may influence their decisions to arrest and detain. These issues will also play into subsequent prosecutorial discretion and also potential alternatives to sentencing.

Make sure your attorneys have experience with clients with ASD. Defense attorneys must be able to point out their client’s intellectual and developmental disabilities, and their specific deficits in comprehension and behavioral control, to successfully defend them. If you are working with a public defender, make sure he or she are aware of the extent of your loved one’s disability and obtains thorough expert evaluations.

If appropriate, train your loved one about how to interact with law enforcement. For those with ASD who can comprehend these types of lessons, walk them through the process of dealing with the police. In their webinar, Emily and Tom Iland highlighted some ideas for training your loved ones about how to interact with law enforcement. Tell them not to resist or fight with the police. Instruct them to disclose their disability and to answer “no” when the police ask if they understand their rights. Come up with a way to produce a form of ID safely so the police don’t think the individual is reaching for a weapon. Shoe tags, jewelry, or other forms of tracking devices may work. Fill Out a SNIP (Special Needs Information Page) form and keep it in your glove box and fridge. First responders are trained to look at the fridge when first entering a home. In certain situations, this may help the police in how to interact with your loved one. SNIP is available on www.besafethemovie.com/resources

Have a plan. About half of people with autism exhibit challenging behaviors. Make sure all people who work with your child knows what to do in instances of aggression, property destruction, or disruptive behaviors. This may include emergency contacts vendorized through regional centers, other professionals, or even a contact within police or mental health services. You can see Marianne Sullivan explain her emergency response plan for her autistic son here (brief video from SFASA's 2016 conference). If police become involved you may invoke rights under the Americans with Disabilities Act to ensure reasonable accommodations for your loved one.

Have your child’s IPP with the regional center include crisis response. If you live in California, many regional centers have a forensic specialist or have access to one. The forensic specialist or other case worker can help clients involved in the criminal justice system, but also can help create preventive measures embedded in the IPP.

Have a community conversation about this subject.  Leigh Ann Davis of the Arc’s Criminal Justice Initiatives suggests bringing community leaders together to have a conversation about autism and I/DD and criminal justice. Most mental health courts focus on psychiatric disability, she explains. Now we need to take it a step farther and train our law enforcement and court community about ASD and I/DD. This conversation must also be about victims with ASD and I/DD, who are often disregarded but all too often victims of crime. We need to “shift our thinking to seeing this a crisis prevention issue,” she says.

By Jill Escher

Children with autism become adults with autism and then "fall off the cliff" in terms of access to supportive services. With the burgeoning population of adults with disabling autism, this represents a growing, and to many families, terrifying, crisis.  This recent article from the Washington Post captures just one aspect of the challenge, a shortage of direct service providers. And the other obstacles are likewise dramatic: the lack of supportive housing options, the years-long waitlists for day programs, the lack of supported employment opportunities, the paucity of good medical care, the unjust use of the criminal justice system to respond to dangerous behaviors of those with intellectual and developmental disability.

There is no easy answer to our mounting crisis. But one thing is clear —the support system of the future will be based on a network of robust and mission-driven nonprofits in each and every community. How do we foster the expansion of this network to meet the needs? Here's one idea that could help: the ECN, or Essential Care Nonprofit.

ECNs would be a new subcategory of nonprofit that provide essential, basic human care services to the most severely disabled, meriting a special designation in our federal tax code. Preferred tax treatments, along with other mechanisms, would bolster their ability to carry out their vital missions.

For the lifespan needs of adults with autism, failure is not an option. Parents can only do so much and only last so long. We need a new vision for long-term supports and many new financial and policy tools to effectuate that vision. ECNs can't solve all our problems, but could be a vehicle to expand our support networks. Check out my proposal below, and please let me know what you think.

-JE

Proposal for creation of a new Internal Revenue Code nonprofit designation: The ECN, or Essential Care Nonprofit

Background: 501(c) and 501(c)(3) organizations

A 501(c) organization is a tax-exempt nonprofit organization. Section 501(c) of the Internal Revenue Code (26 U.S.C. § 501) provides that 29 types of nonprofit organizations are exempt from some federal income taxes (the "tax exemption"). Many states refer to Section 501(c) for definitions of organizations exempt from state taxation as well. In addition, 26 U.S.C. § 170 provides a deduction, for federal income tax purposes, for some donors who make charitable contributions to most types of 501(c)(3) organizations, among others (the "donor deduction").

501(c)(3) organizations encompass a broad spectrum of purposes: charitable, religious, educational, scientific, literary, testing for public safety, fostering amateur sports competition, or preventing cruelty children or animals. For example, a quilt museum, ballet company or Little League team is treated equivalently, for tax exemptions and donor deductions, to a nonprofit providing daily essential human care services to dependent adults with the severe cognitive and developmental disability.

Historically this dichotomy between cultural-type 501(c)(3)s and essential care-style 501(c)(3)s did not present a significant problem since the population of adults with this level of serious disability was small and federal and state government programs generally provided for their care in institutions, nursing homes, and community-based facilities and workshops. However, those historic realities have dramatically changed over the past decades. Today, the population of adults with autism and intellectual and developmental disabilities who cannot care for themselves has surged dramatically (expected to quadruple over the next 20 years based on California DDS numbers). In addition, government funding for essential care-providing nonprofits is severely constrained, and unable to keep up with the explosive demand. Many nonprofits serving adults with autism and I/DD are under severe financial stress, and waitlists for basic services continue to grow.

While nobody wants to return to the era of institutionalization of those with significantly disabling IDD, certain aspects of institutionalization were simply common sense and directly answered clear needs:

• Adults with IDD who lacked the ability to earn a living were not expected to pay rent or board.
• Adults with IDD were not expected to pay property tax.
• Adults with IDD were not expected to pay for their own medical care.
• Funding for adults with IDD came from the government (financially more akin to a tax credit than mere nonprofit deduction).

The Essential Care Nonprofit: A new type of 501(c) organization

The time has come to acknowledge that a certain subset of nonprofit organizations provide such essential, basic human care services to the most severely disabled—services once considered basic functions of government— that this subset deserves a special designation in our tax code that will bolster their ability to carry out their vital missions.

The Essential Care Nonprofit (ECN) would be a new designation under 501(c). The IRS would approve organizations as ECNs in the following circumstances:

• The organization provides direct care services to adults (18+) with autism and/or I/DD deemed at risk of institutionalization owing to substantial functional and cognitive limitations. This is the same eligibility criteria used in Medicaid HCBS waiver programs.
• The services provided could include any of the following: aide support, day programs, supported employment programs, housing, medical care, daily living coaching, and behavioral and other forms of therapeutic care.
• At least 75% of the organizations' expenditures must be on those direct support activities. Other expenditures could be for overhead or serving the needs of others with disabilities.
• ECNs would have special annual reporting and audit requirements to ensure adherence to IRC rules.

ECNs would have several benefits beyond those conferred on traditional 501(c)(3) organizations.

• Donor credit instead of donor deduction: Donors would be eligible for a full tax credit on donations up to $50,000 per year, as opposed to tax deductions.
• ECNs could feature a special rule that explicitly allows family members to create and manage ECNs that serve the care needs for I/DD adult family members in addition to others eligible adults.
• ECNs would of course be exempt from federal income taxes.
• ECNs could be eligible for government-contracted purchasing rates.
• ECNs could be eligible for special Labor and Immigration rules responsive to the particular needs of this population.
• ECNs could be made exempt from some state and local taxes, including property taxes, depending on the response of states and local agencies.
• ECNs could be made the object of special HUD and other programs to encourage development of new housing options.

While ECNs would not likely be the answer to the entirety of the growing adult autism/IDD crisis, they could attract substantial investment from families donors in new community-based nonprofits serving our most severely disabled adults. I would love to hear your feedback about this idea. Is it worth pursuing? How can it be improved? What other efforts are needed, as private funds under the best of circumstances will never be sufficient to address the needs.

Photo: CDC.gov

Thanks to donations from hundreds of community members and more than 170 intrepid and energetic dancers, we raised more than $25,000 for local autism nonpofits at the first Dance-a-thon for Autism, held April 15, 2017 at the Cubberley Pavilion in Palo Alto.

We would like to thank our top fundraisers!
Five Top Teams
Living Unlimited $ 3,434
Team James $ 1,810
Team AJ $ 1,125
Team Justin $ 590
Team Asher $ 496

And our Five Top Individuals
Grant Hall $ 4,770
Miran Choi $ 1,675
James Batek $ 1,450
Sophie Escher $ 975
Feda Almaliti $ 731

Left: Fundraising champ and our hero Grant Hall with SFASA president Jill Escher at the Dance-a-thon.

Where will the money go?
Our beneficiaries this year were:

• Autism Fun Bay Area - based in San Francisco, with programs around the Bay.

• Via Services - based in Santa Clara, with Via West camp near Cupertino.

• Camping Unlimited (Camp Krem) - based in the East Bay, with a camp in Santa Cruz County.

• College of Adaptive Arts School of Dance - based in San Jose.

• Square Peg Foundation - based in Half Moon Bay.

• Friends of Children with Special Needs - based in Fremont, with programs in Alameda and Santa Clara Counties.

• Abilities United recreation programs - based in Palo Alto.
• And lead sponsor, Autism Society San Francisco Bay Area, a volunteer-run nonprofit that provides education, networking and advocacy for the Bay Area autism community.
  

Some examples of projects the funds will support:

College of Adaptive Arts School of Dance:
1) Expand our Outreach to schools
2) Add six free Dance Workshops for those  with Differing Abilities to our schedule 
3) Allow us to expand our Nutcracker Season!
"CAA is enormously grateful to Everyone involved with the Dance-a-thon for Autism!" says school of dance director Janet Heathcote.

Camp Krem:
“These funds will be used to purchase a Vivo Metallophone or Rhapsody Grandioso Chimes for our new playground and in support of our existing music therapy program," says Alex Krem. "The new $100,000 playground will be ready for the start of summer, and our music therapy program will enter its fourth successful year."
 
Abilities United:
"Your generous donation will help cover tuition for our participants in Art, Music and dance classes at the Community School of Music and Arts," says Soheila Razban of AU.

Square Peg Foundation:
“Square Peg, as a result of the Dance-a-thon will be able to provide sessions for 3 scholarship families to receive 15 sessions each at Square Peg Ranch," says Joell Dunlap, exec director.

Thank you everyone for helping us shake it for such a great cause! See you on the dance floor next year!

Dear Bay Area Autism Community,

One of the most troubling and counterproductive developments in the autism field over the past several years has been a growing virulence online aimed at suppressing and denigrating perspectives inconsistent with a particular neurodiversity view of autism.

The use of intimidation in lieu of mature and respectful discourse on critically important topics both polarizes and degrades our multi-faceted autism community. A culture of attack hurts autistic people as well as the many organizations striving to support them.

SFASA condemns bullying, and instead stands firm in defense of public discourse that explores and reveals the great many realities within the diverse universe we call autism.

Very truly yours,
Autism Society San Francisco Bay Area (SFASA) Executive Committee

Posted May 5, 2017

[Update: Thank you to everyone who submitted constructive comments about the first draft of the Matrix concept.
A revision will be posted when completed. In the meantime the explanatory narrative will remain on the blog here and below.]

Second in an Autism Awareness Month series on Rethinking Autism

By Jill Escher

Last week I had the opportunity to watch a professional hockey game from the comfort of a luxury suite with six other autism families. It was the perfect microcosm of the jaw-dropping diversity within the autism spectrum.

For example, I spent the first period break conversing with a young woman with Autism Spectrum Disorder (ASD) with exceptional intelligence and independence. She drove herself to the game and could hold a conversation on nearly any topic. Yet she has plenty of social anxiety and trouble keeping a job requiring variations in routine. Then I hung out with a mom who brought her teenage nonverbal ASD son wearing restrainers on his arms and a helmet on his head to protect him from his almost constant state of body-slamming self-injury.

And there was everything in between, for example my nonverbal daughter who kept stimming with water at the bar sink, or the young man grunting and vocalizing throughout the game, or the boy who kept repeating the same phrases to his mom, but unlike many of the other suite-mates with ASD, appeared to fully understand the nature of a hockey game not to mention the abstract concepts of sports, rules, and competition.

As with most things autism, saying all these people had "autism" or were "on the spectrum" hardly did any justice to the galactic functional and practical differences among them. It's not just a semantic problem: the tendency to lump ASD under one label has had grievous consequences for progress in epidemiology, interventions, advocacy, policy-making, and service design, among other areas.

With that in mind, and with the help of more than two dozen professional and lay commenters, I created the Autism Matrix to offer a more realistic conceptualization of all these different "autisms." Yes, there are some underlying themes placing all our ASD friends in the Autism Zone, but those superficial commonalities are too often greatly eclipsed by extremely vast differences. The Matrix attempts to do justice to this reality.

The chatty young woman who had trouble keeping a job? She's an A1, toward top of Tier 1. The teen with arm restraints? He's functioning at the extremes in zone E5, and the bottom of Tier 3. My daughter is a C5 or D5 in Tier 3, while the verbal boy is probably about a C2 in Tier 2, though that could improve as he develops and learns. This is not to deny the existence of true disability or suffering in the upper echelons of the Matrix, clearly all diagnosed autism by definition is significantly impairing, but there's no question we need better tools to characterize the constellation of differences within ASD.

Please download the PDF of the Matrix diagram by clicking the image above, and also the accompanying Matrix narrative (also pasted below). This is a work in progress, and I would appreciate your feedback (while you're not watching the NHL playoffs, that is).

The Autism Matrix
[Narrative to accompany the diagram]

Background:

In recent years, the trend in Autism Spectrum Disorder diagnostics has been toward a relatively binary approach. Under the DSM-5, for example, all individuals with ASD impairments (persistent difficulties in the social use of verbal and nonverbal communication, and restricted, repetitive patterns of behavior, interests, or activities) are described by a single label, with little attempt to disaggregate the diverse population, even though the differences among individuals often greatly outweigh any initial similarities.

For the purposes of initial diagnosis, such a simplified approach may have value: trajectories can be difficult to predict and access to services can be important. But a single-bucket approach loses conceptual and pragmatic relevance over time. As individuals with ASDs grow past early childhood, they develop an extreme variety of manifestations—from mild social and sensory impairments to compulsive self-injury with profound intellectual impairment. These differences have important implications for policy, public understanding, interventions, epidemiology, research, service eligibility and design, and long-term care. Greater appreciation for functional difference is therefore needed to better characterize older children, adolescents and adults with ASDs.

The Autism Matrix disaggregates those with a professional diagnosis of ASD into subgroups with like features in the most notable elements of functioning—social and adaptive impairment, and intellectual deficits, emphasizing shortcomings in language use. It is not intended as a diagnostic instrument or standardized tool, but instead as a common-sense adjunct tool to present a realistic view of autism. A real-world conceptualization such as the Matrix can enrich public and scientific dialogue about autism while also diffusing some of the unnecessary but enduring confusion over what is best for “autism” or what people with “autism” are like. The design is based on reports and input from parents, caregivers, and clinicians, as well as people with ASDs who have sufficient cognitive and functional capacity to provide comment.  

Major features of the Autism Matrix: Zones and Tiers

The Matrix offers two ways to think about functional distinctions within the autism spectrum: zones and tiers. It contains 10 zones (A1, B1, B2, C2, C3, C4, D3, D4, D5, E5) as well as 3 tiers (Tier 1, Tier 2, Tier 3) relevant to ASD.

The Normal Zone-- The Normal Zone includes the great majority of the population—those without social, adaptive, and intellectual impairment. It encompasses people with exceptional ability and eccentricity, as well as those with learning challenges, ADHD and mild personality disorders, but who lack the significant impairments of ASDs.

Those not diagnosed with ASD but with significant intellectual or adaptive impairment fit into the Matrix but outside of the ASD-associated zones. For example, a person with Down Syndrome with mild to moderate intellectual impairment but strong social and adaptive functioning may correspond to zone B3, and a person with adult onset mental illness may correspond to zone D1. Both of these zones are outside of the Autism Zone as neither have the core characteristics of professionally diagnosed ASD.

The Zone of Confusion-- The Zone of Confusion is where the A1 type of autism, sometimes called Aspergers, bleeds over into normal functioning with quirky traits or substantial learning differences. It can be difficult from a clinical or practical perspective to distinguish between those with ASD and those without in this zone. This grey area tends to generate the most controversy and confusion in terms of autism diagnostics, epidemiology and prevalence, and service entitlement. Once outside of this zone this existence of the ASD tends to be unmistakable and clearly disabling in nature.

The Autism Zone--  The zones represent individuals at a point in time, and are somewhat fluid and simplified. For example, someone in the E5 zone can move to the E4 or D4 zone with appropriate interventions or development over time. Also, many people will have functions that span more than one zone, and there are also wide variations in traits among individuals within any given zone. The Matrix does not capture subtleties in functioning or exceptional skills, which may be present in people with or without autism. Therefore, the Matrix, though more detailed than other representations, is still by practical necessity a simplification.

The Zone’s axes:

X-axis: Deficits in social-adaptive functioning.  

[Normal social-adaptive functioning column is omitted because people with good functionality by definition cannot have autism.] The five categories are:

1. A: Borderline: Social/sensory challenges, with few functional disabilities. Independent but with need for therapeutics to achieve functioning.
2. B: Mild deficits: More social/sensory challenges, compromised executive functioning. Greater adaptive struggles.
3. C: Moderate deficits: Dependent on continuous support, poor daily living and adaptive skills, but behaviorally fairly adaptable.
4. D: Severe deficits: Intensive support needed owing to low adaptive skills and/or high dysregulation, disruptive behaviors.
5. E: Profound deficits: Max support, very high dysregulation and dangerous behaviors.

Y-axis: Intellectual disability

The five categories are:

1. Normal: Normal language, cognitive skills and academic capacity; usually capable of college level work.
2. Borderline intellectual disability: Verbal, odd pragmatics, tendency to loop (perseverate), many social and sensory struggles. Conversational, and can usually graduate high school with supports.
3. Mild to Moderate intellectual disability. Slow or unusual language, impaired cognition and learning, frequently or usually stuck in loops. Some academic abilities such as some reading and writing.
4. Moderate to Severe intellectual disability. Minimal or no language, poor learning, consistent looping behaviors. Some, but minimal academic achievement.
5. Severe Intellectual disability. Minimal or no language, poor learning, consistent looping and often disruptive and challenging behaviors. Minimal academic achievement.

Intellectual function as described in the Matrix represents approximate measurable intelligence; untapped, unmeasurable or latent intelligence in individual cases is possible.

The Tiers-- The Matrix describes three Tiers of autism:

• Tier 1 is characterized by solid language with mild to moderate functional impairments and social and/or sensory challenges. They are mostly independent with ongoing supervision/coaching to address social, sensory, pragmatic, executive functioning and behavioral deficits. Those with intact intellect are mainly capable of college-level work; those with borderline cognition are typically capable of high school academics, with special education assistance. Many are capable of competitive employment, with training, supports and accommodations.

• Tier 2 individuals tend to be mildly to moderately verbal with moderate to substantial functional impairments. They usually can function in small supervised groups without 1:1 care. They have striking mental disability, slow or obviously unusual language, and global learning challenges. They are frequently or usually stuck in loops, or perseverative behaviors. They are dependent on continuous support owing to poor daily living and adaptive skills. Some in the B3 and C4 zones can behaviorally be fairly adaptable, but those closer to the D column are often highly dysregulated, with intermittent aggression or disruptive behaviors as a consequence. Though individuals in this tier require fairly continuous supervision, they often can function in small supervised groups without 1:1 care.

• Tier 3 individuals are minimally verbal with often incapacitating functional impairments, often or usually requiring 1:1 care and often requiring intensive lifelong supports. They have minimal or no language, poor learning, and almost constant, consistent looping, or perseverative, behaviors. They have minimal academic achievement. Those in the C column tend to have mild behaviors while those in the D and E columns frequently exhibit destructive behavior, including at times outbursts, aggression, and self-injury, requiring intensive support.

Other comments on the Autism Matrix:

• Co-morbidities— Co-morbid traits can have profound impacts on functioning and therefore zone placement. Apart from intellectual disability, which is the most prominent co-morbid feature in individuals with ASDs, however, co-morbidities are not listed on the Matrix, but should nevertheless be considered as contributors to functioning. Co-morbidities include but are not limited to: seizures and epilepsy, sleep disturbance, gastrointestinal illness, depression, poor gross or fine motor skills, tics and catatonia, obesity, headaches, aggression, self-injurious behaviors, pica, mental illness, depression, immune dysfunction, apraxia, visual perception challenges, mutism, anxiety, and dental pathology.
  

• Settings/context-- Another contributor to functioning level is that of settings and context. Environments with sensory overload, lack of open or calming spaces or desired activities, stressful family or situational dynamics, lack of proper caregiving, bullying and abuse, or poor nutrition, for example, can influence level of functioning at any given time.
  

• Etiology-- The Matrix is agnostic as to etiology of the variety of mental pathologies with autism features. Similar inducements (eg, a certain mutation) may result in varied phenotypic traits, and conversely, different triggers (eg, prematurity or genetic variant) can yield similar phenotypic traits. The Matrix is only intended to promote more precise and realistic understanding of the characteristic outcomes, and not causes, of ASDs. That said, mounting evidence suggests that ASDs are physiological in nature. The looping thoughts and behaviors described in the Matrix likely stem from enduring dysregulation and maldevelopment of neural circuitry and synaptic functioning.
  

• Note on examples-- Examples in the Matrix are either taken from popular books, online videos or websites, or used with permission.

The Autism Matrix is a work in progress based on input gathered from both professional and lay sources. Further commentary is appreciated. Comment below or email: [email protected]   

© Autism Matrix and Autism Matrix narrative 2017 Jill Escher. Permission to reproduce given upon request.                                                                                                                                                                          

With his Azure series, a concert pianist taps into his global network to reinvent musical performance for special needs audiences.

by Stephen Prutsman

As a concert pianist fortunate enough to have performed in many of the world’s grandest concert halls, I never imagined that one day I would find myself devoted to re-inventing musical performance for families affected by autism and special needs. But when my wife and I had a son with autism, our lives and work were forever changed— and one activity that became off limits for us as a family was the staple of my profession, musical concerts.

Families like ours often couldn’t enjoy events together due to autism behaviors such as vocalizations, hand-flapping, rocking and anxiousness. So several years ago, after we created the nonprofit Autism Fun Bay Area (AFBA) to fund a summer camp and swim program for kids with autism, we quickly expanded its mission to encompass music and performance.

To start down this new path I asked my friends in the St. Lawrence String Quartet at Stanford if they would be interested in partnering with AFBA to present programs for special needs families. I also contacted Stanford Jazz, hoping to add jazz and holiday shows. Both organizations responded with an enthusiastic “Yes.” And thus a new approach to concert-making was born.

We called these “Azure” concerts and wanted them to be a safe place where our special families could enjoy some fun, relaxation, great music and socializing without the usual stresses. Our motto is “all behaviors are welcome,” which is a far cry from the reverent, hushed pin-drop atmosphere of traditional concerts. In fact we ask performers to open their minds to allow, and even embrace, external sounds and motions from our audiences. When we hear a yelp or shriek, we can think “wow – this musical moment really touched that person” or even consider the sound as an actual and integral part of the performance.

From a production point of view, we take care that transitions, lighting, applause and noise are mellow and sensory friendly. Programs run about 50-60 minutes. Performers dress nicely and we like to have a printed program because we see this as a ‘real’ concert. Between pieces we usually create some kind of interaction with either the audience or the performers.

There’s also interaction with the music. I’ll often have a kid sit next to me at the keyboard, and a spontaneous improvisation begins. Sometimes it’s quite beautiful with a scarcity of pitches. Other times a child might pound the keys with his fists, and I’ll respond in kind.

At the end of the program we leave time for a meet and greet with the performers, along with a bit of “instrument petting zoo.” For example, a participant can pluck or bow a violin or cello, or try the drums. It's true that many people with ASD have a special connection to, and sometimes an aptitude for, music. Many of our concerts also feature musicians with autism.

In recent years we’ve greatly expanded the AFBA reach. Not only do we offer our popular Azure series at Stanford, many Bay Area orchestras and dance companies have partnered with us to open their dress rehearsals to our audiences or create special workshops, including the San Francisco Ballet, which worked with us to host Nutcracker and Swan Lake workshops.

We’ve also gone global. When I travel for performances, I try to include an Azure performance before or after my “regular” recital or orchestra appearance. We’ve had these in such far-off lands as Kosovo, Belarus, Bulgaria and Colombia. These events have been heartwarming to me and, judging from the responses, very meaningful to presenters and the many families who have attended.

Azure  series have also taken root around the U.S. and Canada, and I continue to receive requests for help to start new ones. Cities with ongoing series are Phoenix, Vancouver and St. Paul, with annual performances at Spoleto USA in Charleston. The newest venues include a music school in Victoria BC, the Peabody Conservatory in Baltimore, a museum in St. Petersburg, Florida, and the University of Texas at Austin. No matter where we go, people always remark how rare and welcome these concerts are.

In that spirit, I'd like to close with a letter we recently received from a mom who attended a recent Azure in Baltimore with her autistic son—it captures our mission beautifully:

“Thank you from the bottom of my heart for a beautiful concert for our children.  From the minute we walked in the door my heart was full.... We sat down and I opened the program and started to cry when I read the words in big letters at the top, 'All behaviors welcome here... ENJOY!'

Learn more about Autism Fun Bay Area: autismfunbayarea.org

Sign up for the AFBA email list: autismfunbayarea.org/contact

Sign up for the AFBA Facebook group: https://www.facebook.com/groups/AutismFunBayArea/?ref=bookmarks


Stephen Prutsman is a concert pianist, a member of the Autism Society San Francisco Bay Area board, and co-founder of Autism Fun Bay Area. Learn more about him at stephenprutsman.com.

Read more blogging from Stephen: Why Can't We All Get Along?

My daughter's Muppet doppelganger can teach us to just chill

By Jill Escher

My daughter Sophie may not need much of a Halloween costume this year. She is the born embodiment of the latest American cultural icon, Julia, the first Muppet to have autism.

What, did the producers from Sesame Street secretly stalk my kid when plotting Julia's character development? The excited hand-flapping, the "this is too much for me" ear-plugging, the minimum language with the undercurrent of social longing, the object-attachment, the delight in small things, the big-eyed adorableness, and even the bang-chop haircut. The girls are veritable twinsies inside and out.

So imagine the relief when I can tell strangers, "Sorry, Sophie has autism, you know, just like Julia on Sesame Street." Implied in those italics is not just the girls' similarity, but a broader message: "Lots of kids now have this neurodevelopmental disability, that's how they are hard-wired, there are now so many that they've become a Muppet, and we accept and celebrate them, just like all kids. Yes, they behave differently (so sorry Sophie just startled you with her screeching), but please just chill."

When you see my nonverbal autistic 18 year-old son accompanying me in the women's room, just chill. When my daughter doesn't respond to your greeting but instead excitedly taps at her iPad, just chill. When you see a boy throwing a tantrum, covering his ears at the supermarket, just chill. When you meet a young man who describes train schedules for hours at a time, just chill, hey, even join him in conversation. When you see a boy bullied at school, stop it and protect him. It's autism, it's become a common disability, and every neighborhood in our country is affected, including Sesame Street.

Now, I'm not suggesting that we "just chill" about the stunning surge in autism rates, or "just chill" about the historical and biological factors that may be driving the underlying neurological dysfunctions, or "just chill" about the need to reinvent public policy to provide care for the burgeoning population of adults with autism—these are matters of utmost urgency.

But I am suggesting that the orange-coiffed slightly cross-eyed Muppet is doing an entire generation of affected children and their families a huge favor—inviting more understanding, more acceptance, more neighborliness overall. I bet even Oscar will come to love her.

(First in an Autism Awareness Month series on Rethinking Autism)

By Jill Escher

The autism community stands at a frightening crossroads. In one direction I see an unmistakable surge in autism rates — up 20- to 40-fold since the early 1980s according to California data reflecting only the more severe cases — classrooms overflowing with autism spectrum disorder (ASD) kids, seasoned clinicians boggled by the influx of ASD, adult programs bursting at the seams, social services systems hitting their breaking points, a study showing that autism’s burden on the American economy could exceed 3% of GDP in ten years, and a veritable ocean of panicked families facing increasingly uncertain futures.

But in the other direction, I see something quite opposite — a growing vogue for skepticism. Not just skepticism, but sometimes an entrenched and smug dismissiveness about the growth of autism, a dogma-pounding assuredness that that this epidemic is nothing more than a mass delusion. I call this trendy mythos “The Complacency Monster that Ate Autism.” And he is popping up everywhere.

He’s a favorite subject in an autism research weekly. He is adulated in commentaries in medical journals. He is glorified in a pop science tome exalting autism as a “gift.” A cabal of bloggers and tweeters love him. In policy circles, he lurks in the background of threatened closures of programs and housing. He’s even an honored guest at the IACC, which advises federal agencies on autism-related funding and policy. Every day he chomps away, the Complacency Monster undermines the urgency needed to address our explosion of autism.

Indeed, if this flood of autism is merely outgrowth of better awareness, why bother funding research to hunt down potential causes? Why bother thinking about prevention? Why re-invent federal and state policies to serve the intensive needs? Why fund more adult programs or supportive housing? These disabled adults existed in these vast numbers and we’ve never noticed a crisis before, right? Indeed, why bother doing much of anything other than maybe finding some risk genes and touting a civil-rights-ish mantra of acceptance and inclusion?

These are scary times—we autism families have so much to lose. But let’s admit the Monster did not emerge from nowhere—there are some (at least partly) understandable reasons for his existence. Let’s understand them better, and then end with some good news.

1. Vaccine Theory Backlash—Necessary, but Hyper-simplistic

Beginning in the late 1990s, a vaccine hypothesis to explain the mysterious surge of autism spread like wildfire and scared many parents away from vaccinating their children. The scientific community quite rightly circled its wagons to reassure the public that vaccines did not cause autism, both to protect the integrity of autism science and moreover to protect the public health from the ravages of preventable infectious diseases. One of the tactics that emerged to help quell public alarm, and perhaps due to exasperation with the enduring Hydra of the vaccine blamers, was a growing tendency to deny outright that autism rates had grown at all. I have some sympathy for this rationale—it is urgent that our children be vaccinated, and strong narratives help drive public health progress. However, the irrelevance of vaccines to autism in no way undercuts the reality of rising rates. We might as well say “Almonds don’t cause autism, therefore autism hasn’t increased.” It’s illogical and unnecessary, albeit an artifact of good public health intentions.

2. Environmental Causation Goose Egg—A Premature Funeral

In spite of vigorous attempts, research has failed to uncover significant environmental causes for autism, aside from factors with small population effects, such as advanced paternal age and prenatal factors such as anticonvulsant medications and prematurity. Without compelling environmental explanation (as with the Zika virus fueling the microcephaly epidemic, for example) why should we be open to the idea that autism rates have truly grown?

Well, this may sound strange, but I believe we’ve barely scratched the surface in environmental research. Autism science has so far overlooked a goldmine of potential environmental factors — including exposures to the germline, the DNA and associated biological factors in the parental gametes. Silent glitches imposed in a parent’s germ cell can impair a baby’s neurodevelopment, a dimension of risk that strikes me as obvious (visit my science education website to learn more) but has not yet made many inroads into conventional autism research. And there are other nascent hypotheses, relating to gene-environment interactions and immune dysfunctions. With a veritable continent of causation research ahead of us, the absence of smoking-gun findings to date should hardly justify any scientific defeat or ennui.

3. Heritability ≠ Classic "Genetics"

Research shows that autism is strongly heritable. For example, there is high (about 70-90%) concordance among identical twins, and siblings of a child with autism have about a 20% risk of also having autism, even though autism is seldom found up the family tree. But the findings have fed a simplistic sense that since autism is heritable it must be genetic.

“Heritable,” however, does not equate to “genetic and handed down through the generations.” Autism is by no means a conventional genetic condition. Heritability can and does also result from “de novo” or new errors in DNA itself, or in the instruction book chemical tags and codes that determine how genes are expressed. Some of these “epigenetic,” “regulatory,” or “non-coding” drivers of gene function are vulnerable to toxic exposures such as tobacco or drugs, and can be newly inflicted in gametes (per above). This genome-tampering is why, contrary to popular opinion, you can in fact have a “genetic epidemic.” Evidence of heritability among siblings should raise alarm about environmentally induced impairment, but to the parental gametes, and not so much to the ASD fetus itself. Heritability of autism provides no rational basis for denying an actual increase in cases.

4. Hype around Social Factors—Overblown and Unquantified

The most repeated argument in autism denialism is that the increase in autism prevalence results from social factors such as broader diagnostics, better awareness and acceptance, and increased access to services, and not from any actual increase in the rates of neurodevelopmental pathologies. Much hay is made over the fact that the DSM, or Diagnostic and Statistical Manual of Mental Disorders, has tinkered with criteria, supposedly opening the floodgates to mild cases that would have been ignored or otherwise diagnosed in the past.

While some cases of mild autism or cases once labeled “feeble-mindedness,” “mental retardation,” or “childhood schizophrenia” in the past are now just called “autism spectrum disorder,” no study shows these shifts account for the explosion in significantly disabling autism we see today. Rather, the tendency is to project this explanation onto the data without actually quantifying the effects, so we could have 100,000 or 200,000 or 300,000 or a million autism cases here in California, and this boundless logic would be used to justify the entirety of the explosion.

Here in California, by the way, our autism population in the developmental services system (DDS) has grown from about 2,000 in 1980 to a staggering 91,000 today. DDS only serves residents with substantial developmental disability; those who are mildly affected are denied entry. Several reviews of DDS data during this growth surge have found that social factors could not account for the increase in this strikingly disabled population. Indeed eligibility criteria were made more stringent, not broader, over this timeframe. Nonetheless the denial-prone are quick to blame soaring DDS autism rates on social factors. Social and labeling factors, while worth noting as a contributor, have been overhyped as a rationale for the autism increase.

5. Neurodiversity—Um, Brains Are Biological Organs

While there are plenty of other pressures bending some toward denialism (scientific groupthink, the politics of grant-chasing, the unbalanced burden of proof, for example), I’ll wrap up by addressing the ascension of the neurodiversity movement. I actually adore many things about neurodiversity and love how it promotes acceptance and empowerment, Hey, ten thumbs up for Sesame Street’s new muppet with autism, Julia.

But let’s draw the line at biology. Like hearts and lungs, brains are biological organs. When a child has a hole in his heart, we cherish the child but hardly celebrate “cardio-diversity.” The scientific literature is now replete with findings of pathological neurobiological phenomena in autism, including impairments in neural connectivity, dendritic pruning, and synaptic functioning, among others. Increasing prevalence in serious brain pathology causing significant to profound disability (my two kids with autism, ages 18 and 11, are nonverbal and function at preschool levels, for one sobering example) represents a monumentally serious human crisis that should never be sugar-coated or mis-portrayed as mere flowering of supposed brain diversity.

But what, do I see rainbows on the horizon? Like the Bad Witch melting in Oz, it seems the Complacency Monster may be headed for certain demise. I regularly get emails from community leaders and researchers concerned about the lack of progress and forward-thinking about the adult autism crisis. Our heroes in the services sector, smothered by their growing caseloads, are begging to be heard and pleading for relief. Autism advocates around the country are developing new ideas for reform, sick of the kumbaya nonsense and ready to fight for our families. Each day that our crisis grows, the Complacency Monster seems more and more absurd. As an autism dad friend said, its position is “like standing on the train tracks and arguing about the speed, color and the driver of the train that is going to hit you.”

Jill Escher is president of Autism Society San Francisco Bay Area, an autism research philanthropist (Escher Fund for Autism), a provider of housing to adults with developmental disabilities, and the mother of two children with nonverbal autism. She can be reached at [email protected].