Blog Posts

Is it time to give up on a single diagnostic label for autism? This father says YES

5/31/2018

By Stephen Prutsman

Let the saber-rattling begin! Judging from the latest round of social media Autism Wars 2.0, one would have thought conflicts about “autism” were as deep-seated and hate-filled as any in the war-torn Middle East. (BTW, how on earth did humans entertain themselves before the days of Facebook?). Anyway, on its Facebook page SFASA posted a photo of the backseat of our board president’s car, ripped up by her severely autistic son, with the tag: When autism awareness month starts out like this…#AuthenticAwarness. Shortly after, it was as if the gates of hell were opened, with multiple irate commentaries accusing our president of “shaming” her child. Oddly, many of the angry comments came from people outside our area who hitherto have not meaningfully participated in our SFASA discussions regarding advocacy for our regional autistics and their families.

But back to the photo: Was disclosure of ripped upholstery shaming a young man with a mental difference, or did it highlight a symptom that is relevant to public discourse, one that any parent would love to alleviate, and one that should not be sanitized or kept under wraps?

It seems that autism for many of us (let’s call it camp A), is an identity, in no way different from one’s race, gender or sexual orientation. This assumption therefore posits that all behaviors and differences are an integral part of this identity and as such are wonderful and unique, and should be embraced. For others (camp B), autism is a debilitating disorder whose painful symptoms, such as self-injury and the destruction of property, is NOT something to be embraced or celebrated, but a painful reality needing to be explicitly addressed and alleviated. Those in camp B strike me as believing the disorder is separate from the beautiful soul inside the child. What a vast divide in what this single word, autism, means in different cases, and to different people.

Consider for a moment if “Scandinavian” and “Krabbe,” a neurological disease most common among those of Scandinavian descent, were grouped together; let’s call this hypothetical grouping “ScanKrab." For some, it would be a beautiful identity full of rich culture, heritage and uniqueness. For others, it is a seriously disabling condition. One can only imagine the confusion, misunderstanding and pain that would ensue if scientists were to lump both under the same category.

So with “autism" we appear to have such lumping. But which interpretation is right? Because the word signifies many different things to many different people and organizations, disagreements fester and fights inevitably erupt. And it's such a waste of time.

In my opinion one answer would be for camp B—those who view autism as a seriously debilitating disorder—to divorce themselves from the A-word altogether. Let “autism” refer to a different way of thinking, sensing and being in the world, a difference to be celebrated. Let clearly impairing mental pathologies of camp B enjoy new labels. No more “autism” in their advocacy, labeling, or treatment. Let the A-word die and be re-born, gifted to camp A, no longer as a medical disorder, but as an identity.

With new labels for camp B, individuals and parents can engage in advocacy for this subset with an acute need for treatment and care, and do so in very specific and productive ways. What a waste for those of us who must provide intensive, non-stop care and advocacy for grievously disabled children and adults to continue to deal with hostility flowing from the camp A different view of “autism.”

A few weeks ago the noted Dr. Simon Baron-Cohen asked, “Is it Time to Give Up on a Single Diagnostic Label for Autism?” in a commentary in Scientific American online. I could not say YES fast enough.

Stephen Prutsman is a father of a son with a severe developmental disorder once known as "autism." He is also a member of the board of Autism Society San Francisco Bay Area.

Disclaimer: The opinions and assertions stated in the SFASA blog are those of the individual authors, may not reflect the opinions or beliefs of SFASA, and do not reflect the opinions of the Autism Society of America. SFASA is an independent affiliate of the Autism Society of America, the leading grassroots autism organization.

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The Closure of Sonoma Developmental Center Is No Victory for California's Developmentally Disabled

5/30/2018

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The soon-to-be-closed Sonoma Developmental Center land covers 2.6 square miles in a gorgeous setting, and is of immense value. But proceeds will be shunted away from the developmentally disabled.

By Michelle Condit

Recently I attended a town hall meeting in Sonoma related to the closure of the Sonoma Developmental Center. State senators and assemblymembers were on the panel, as well as local representatives including the director from the Department of Developmental Services. The audience included local community members worried about what would happen to the property, as well as families of the residents who were experiencing or about to experience loved ones entering community-based care. Vacating of the center by its current residents was already a foregone conclusion. This left much of the conversation focused upon what would happen to the land. One member of the audience, however, did ask representatives to allocate proceeds from the land to follow the developmental disability (DD) population in the community.

Less than 1% of California’s DD population resides in institutions, the rest in the community. And with respect to people with autism nearly all (94%) reside with family members. No one doubts the staggering need for more community supports for this sometimes extremely disabled group.

The first two answers seemed fairly benign—without promises, but reflecting a sympathetic ear for the advocates’ plight to save services for individuals with DD. However, it was the final answer given by a state senator that to me summed up the realism of what was occurring. The sentiment: the money would end up in the general fund and the likelihood that the regional centers would recover 100%—well, it was not going to happen. He presented as a realist, though it was an unpopular response to many of this particular crowd. He let the audience know that the most that could be hoped for is creation of “adequate” services though he hated to use that word.

The statement led me to consider the following question. What are “adequate” services? I work within the service provider sector and my response would most likely differ from a family member with a loved one with DD, as well as from a taxpayer who does not have an affected family member. From experience I have come to recognize that by most of our standards and by the metric of our regulatory mandates, current funding does not foster “adequate” support services.

From my experience, the linchpin of “adequate” services for an adult with DD who requires and/or desires support is the person(s) from whom they receive direct support in his or her day-to-day life. This is true whether those caregivers are funded through the state or family members who often provide this for free.

It has been noted that the cost of caring for an individual at a developmental center has risen to $500,000 a year, compared to an estimated $25,000 to $300,000 in community care. That lower number can be attributed to many things, including free labor on the part of family members, vastly lower hourly rates for care (developmental centers featured well paid credentialed professionals, community care relies on minimum wage workers with no or minimal training), free family housing rather than independent living with market rents, and lower overhead. It should also be obvious that for the most part those remaining in developmental centers tend to have very complex disabilities, entailing higher costs no matter where they reside.

The failure to allocate Sonoma funds to the DD community is emblematic of our failing system that continually offers decreasing funding to the population it is obligated to support. Since I entered the field more than 15 years ago, new models based on individual choice and self-direction have become a central theme of service provision. However wonderful this alternate system sounds on paper, in reality it is woefully underfunded. In many regions it is becoming impossible to hire direct support workers at the minimum wages offered. And DD individuals cannot afford housing with their $900 per month SSI check.

Most importantly, a system of community care requires a workforce that is professionalized and possesses the skills that the person supported needs to learn or have executed for them. Skills include management finances, health and safety, cooking, and maintaining a household. “Adequate” to me denotes “maintaining.” With “adequate” services there is no guarantee of fostering an environment of growth and learning. It’s a model of bare subsistence without regard for the quality of life of the individual with DD. Many adult clients with autism and DD are very challenging, needing highly trained staff and often facilities appropriate for their sensory and behavioral needs. Those settings are evaporating with no replacements in sight. For non-profit service providers, fundraising is often needed to close the gap between revenue and expenses, including helping to fund desperately needed training for staff.

So I see the Sonoma closure not as a civil rights victory for adults with DD, but rather as a setback for our entire DD community. The money will flow to the general fund and not to support the urgent needs of our most severely disabled. While some champion the closure of Sonoma, we must be aware that the systemic underfunding of community care could easily translate to the neglect or horrors documented in some institutional living, but this time occurring silently within our local communities.

Michelle Condit works for a supported living agency based in the Bay Area. She is a member of the board of Autism Society San Francisco Bay Area.

Disclaimer: The opinions and assertions stated in the SFASA blog are those of the individual authors, may not reflect the opinions or beliefs of SFASA, and do not reflect the opinions of the Autism Society of America. SFASA is an independent affiliate of the Autism Society of America, the leading grassroots autism organization.

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Why You Should Pursue Genetic Testing for Your Autistic Child

2/21/2018

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Whether through a clinic or a research study, you may unearth pivotal information while also helping to unravel some of the mysteries of autism — “I get emotional just writing about it.”

In most cases, the cause of autism remains a puzzle. But for some, like Denise's daughter pictured here, testing reveals long-awaited answers.

By Jill Escher and Denise Haas

One of the most frustrating things about autism is, well, the meaninglessness of “autism.”

It doesn’t tell you much about your kid’s symptoms. He could be a college graduate or severely cognitively impaired. She could have radiant health or suffer seizures and gastrointestinal distress. Autism can involve any number of brain and health abnormalities. And of course the word conveys nothing about cause. Sadly, for many, autism is something of a fake diagnosis, just a placeholder referencing some level of social-communication-behavioral impairment threading though a slew of wildly varying conditions.

Slowly, however, genetic findings are giving some families long-awaited answers, sometimes bearing implications for treatment, trajectory, and co-morbidities. Families affected by similar mutations are connecting, supporting each other and working together toward improving their children's lives.

Despite the fact that chances of a definitive finding are still small—probably a bit less than 10%—some of us, like author Denise, hit the jackpot, unleashing a flood of insights about our children’s conditions. Also, even if nothing in the DNA looks fishy right away, you might get a genetic diagnosis in the coming years as the research continues to progress. And finally, and perhaps most important, by giving your child’s DNA (and/or brain, which we'll also discuss) to science, you will further the noble research quest to plumb the mysteries of the autisms.

Causes of autism

We'll start with an overview of what research has discovered so far about causes of autism. Please note this is a constantly evolving field and though our discussion reflects the current literature, nothing we say here is a fixed reality.

SOMATIC INSULTS

First, the “somatic insult” group. Under this umbrella would fall fetal or early life injury, such as prematurity, hypoxia at birth, prenatal infection or immune response, or prenatal exposure to certain drugs such as valproic acid (often used in the treatment of epilepsy). It’s not known what percentage of autism cases can be attributed to somatic insults but it’s probably safe to say somewhere between 10 and 20%. Though it's difficult to be definitive, clinicians can often make an educated guess about whether any of these non-genetic stressors played a role.

IDENTIFIABLE GENETIC GLITCHES

Second, there’s the “identifiable genetic glitch” category, with that nearly 10% chance a clinician might hand you a genetic cause. There are several types of genomic errors in this category.

Rare parent-inherited mutations sometimes knock out an important gene function, as can happen, for example in “consanguineous” families where parents are first cousins. Rare inherited mutations seem to account for up to 5% of autism cases.

“Point mutations” typically occur de novo in the child’s genome, meaning the glitch happened anew in one of the parent’s gametes. These small mutations usually impair a bit of a gene, misguiding the creation of a protein necessary for normal development and/or function. It’s estimated these may account for 6% of cases. Denise’s daughter was found to have one of these de novo mutations.

Genetic errors called “copy number variations” refer to stretches of DNA that have been deleted or copied, usually de novo in the child. These “CNVs” account for perhaps up to 5-10% of cases.

It’s important to emphasize the genetic errors in this identifiable glitch category are extremely rare, in the sense that no single mutation accounts for more than 1% of all cases of autism, and usually the frequency is much lower. So while this category of causation has seen solid progress in the past decade it’s also the land of diminishing returns.

Keep in mind that while these rare mutations are typically disease causing, seldom is risk restricted to autism. They often confer risk for other pathologies as well, including epilepsy, ADHD, schizophrenia, anxiety, and intellectual disability, not to mention abnormal physical traits. And these errors tend to cause more severe, not mild, impairments.

OTHER PROBABLE GENOMIC MISCHIEF

The third category of autism causation is what we think of as “genomic mischief that may be in there but we can’t really detect it (yet).” Your kid might have a mystery susceptibility or blooper lurking in his genome but given the limits of current technologies no clinician can say for certain. Hopefully in the coming years we will learn more about these glitches, which include the following:

“Somatic mosaicism.” In the case of autism, somatic mosaicism refers to mutations present in all or part of the brain but not present in other parts of the body. These mutations occur very early in embryonic development rather than in the egg or sperm of a parent like the other de novo mutations. Clinicians, however, typically can’t detect somatic mosaicism in your kid because, well, you can’t get into the tissues of the brain. Instead, these mosaic patterns have been found in post-mortem (meaning the individual has died and donated his brain to science) tissue. It’s thought that 3-6% of cases result from this phenomenon.

Ladies and gentlemen, an announcement: Please oh please sign up with Autism BrainNet so you can have the option of donating your child’s brain in the event of her unfortunate early demise. It only takes a few minutes and you will be under no obligation to make this donation when and if the time comes (and of course let’s hope it doesn’t). But autism research desperately needs more brains—studying peripheral tissues such as blood can provide hints but not the full Technicolor picture of what underlies the autisms. Now back to our program.

“Non-coding DNA.” Did you know that only about 1% of your genes codes for proteins? But what of the other 99%? Do any of those endless stretches of DNA have spots that may increase risk for autism? The answer is probably yes, but it’s too early to say for sure. Non-coding DNA contains important regulatory elements that help control how genes function, in addition to some scary dark regions that, if not properly controlled, can damage other parts of our DNA, as well as what appears to be non-functional junk. But while “whole genome sequencing” can spell out the interminable detail of all our genome, geneticists cannot yet separate the wheat from the chaff. In other words, with rare exception they can’t tell if a variation is pathogenic or benign. Only more research, number crunching, and statistical wizardry can illuminate any autism-related landscape in this mystery world.

“Common variation.” We know that autism is a highly heritable condition, with general heritability estimates ranging from about 40 to about 80%. Given that this high rate contrasts with the relatively scant findings of genetic causes, some researchers have speculated that the bulk of autisms we see today result from a great misfortune of loads of regular ol’ common genes with subtle effects coming together to somehow explode into mental disorders of stupendous magnitude. Given the severity of much of the autisms, the enormous rise in its prevalence, and the lack of evidence that autism travels down family trees—not to mention the impossibility that this line inquiry could yield any useful clinical information—we tend to see the “common variation” as a fool’s errand. Nevertheless research will keep digging for those common genes and perhaps some very mild autisms have roots there.

“Non-genetic heritability.” Not all heritable effects come from our DNA. The double helix with all those groovy genes only provides one part of the grandiose and unfathomably complicated molecular instruction book for building and operating a brain. All around the DNA are layers upon layers of teeny tiny regulatory processes that can activate or silence genes or regulate their dose or timing of expression. These processes are absolutely critical for proper brain-building and function, but have hardly been explored in autism research. Today’s genetic testing merely looks under the proverbial streetlight and sidesteps these thornier questions.

One family’s story: How finding a mutation opened a new world

Denise Haas

I (Denise) am the mother of a lovely, vivacious 23 year-old woman with autism. She is good natured and is noticeably happy for the most part, but has minimal communication ability, intractable seizures and motor problems.

Her autism became apparent at around two years old in 1997; she had pretty normal development to that point, but started slipping away. With her regression, she lost all language and much of the fine motor skills she had acquired. She received a diagnosis of autism at 27 months. Some notable childhood traits included a large forehead, abnormal bone development, joint hypermobility, late development of gross motor skills, an abnormal EEG, and sensory challenges (she hated the sound of a large outdoor fountain that was near our home). As a baby, she did not seem bothered by her motor challenges; she was happy and content to walk at a 13 months holding onto our hands, but did not walk alone until 17 months. Unfortunately, by age two it was apparent that her skills had stealthily declined and she experienced the disturbing loss of eye contact and initiated stereotypic behaviors like spinning and odd hand movements often seen in autism.

Like most people diagnosed with autism she was tested for chromosomal abnormalities as a child — this test was normal. A test for Rett Syndrome also came back normal.

Fourteen years later, in 2011, our family was able to get an appointment with a clinical geneticist interested in autism. He mentioned genetic testing as a future plan. Then it took until 2014 to arrive at being considered for exome sequencing. This is a genetic test that looks for mutations in that 1% protein-coding portion of the genome. Insurance gave clearance after a few months. We did the testing as a "trio," meaning that my husband, myself, and daughter all submitted blood samples. We did the testing through Stanford, where I work.

After a few months the results came back... with nothing important to tell us. There was a missense mutation found, but it was not known to be pathogenic, even I had that same mutation.

Then more than a year later, in Dec 2015, our family got an interesting phone call from the geneticist. A de novo germline mutation was found in our daughter's genome. The mutation was on chromosome 1, and concerns a gene called GNB1.

In 2015, a team at Columbia University identified the first few cases of individuals with a mutation in GNB1. Columbia then queried genetic repositories worldwide and found a total of 13 individual with this mutation. The Columbia researchers published a paper sharing their amazing findings in April 2016.

During our fateful call in 2015, our geneticist also ventured to add that he thought the GNB1 mutation was the cause of our daughter’s autism. Wow, autism explained – in our case, the explanation is an identified rare disease that has autism as one of its features.

I’ve always been driven, but now I have a mission with a solid direction. I now have knowledge of what is causing my daughter's many challenges and symptoms. Rather than addressing that amorphous thing we call "autism," I can instead direct my attention to her particular disorder and its biological pathways. Rather than treating autism, we can support research on pharmaceutical treatments that target blocking or unblocking receptors and signals that aren't working in our daughter's specific syndrome.

"Rather than addressing that amorphous thing we call 'autism,' I can instead direct my attention to her particular disorder and its biological pathways."

This mutation is noted to be disease causing (though it does not cause autism symptoms in all cases) and we know the mutation affects many bodily systems. Through the years, she has had many symptoms of some sort of unknown underlying illness – a general malaise that could not be pinpointed. We now know that her chronic hematological abnormalities through the years likely stem from the mutation and unfortunately, is an ominous symptom to follow as she ages. We can explore what her mutation does to the body’s chemistry that may influence her seizures. Her treating physicians can help us to use medicine to prevent potential health problems that are unique to people who have this mutation. She fits a particular mold, which we now recognize and better understand.

My short-term hope is to find the cause of seizures that many of the individual with the mutation experience. These seizures are often life-threatening and must be avoided. In the long term, I hope research unveils the cell signaling that is dictated by the GNB1 gene which will advance our understanding of the pathogenesis of the mutation and human biology in general.

Like everything in autism, nothing about this mutation is straightforward. Individuals with glitches in GNB1 present with a spectrum of features, from verbal to non-verbal, ambulatory to non-ambulatory, and having sensory challenges of differing degrees depending on where the mutation is located on the gene. Knowing that defects within one single gene can seed such a dizzying array of phenotypes should give us pause when we even think of “autism” as a unitary disorder.

But we also have a great deal in common, and connecting with other GNB1 families has been nothing short of amazing. I get emotional just writing about it. I see photos of the young children with this mutation, and I worry. Many have not yet developed seizures but unfortunately may do so as they age. We must assist these parents so that they can take preventive measures to avoid their child’s exposure to seizures. I feel empowered with this newfound information and motivated to nth degree to understand more.

Now, I am not a Facebook fan (in fact, I am a bit of a hater) but I must say that for our families, it’s been the best thing EVER. A parent set up a GNB1 disorder private group that now includes families from more than 10 countries. We share all sort of information about our kids that help us evaluate trajectory and interventions. We are also working on a GNB1 website that is about to go live (gnb1.org)

I want to encourage all autism families to undergo genetic testing. We must remember that as parents, we help guide our loved one’s care – so please ask for testing and follow-up on the process. Ask who you should call to follow-up on the authorization process and call monthly (I would like to encourage follow-up calls – the insurance process can be difficult and clinicians have large caseloads). Do not feel shy about asking for testing, and insisting — you are your loved one's absolute best advocate.

Getting tested

To get your child’s genes tested you have a few options: you can seek evaluation by your primary doctor such as a psychiatrist who is up to date on autism genetics, get referred to a clinical geneticist, and/or enroll in a genetics research project.

When you receive a diagnosis of autism your clinician may order a test for Fragile X syndrome and also a test known as a chromosomal microarray (CMA). The CMA can detect copy number variations, those CNVs discussed above. Also, depending on clinical evaluation, a test called whole exome sequencing, which looks at that 1% of genes that code for proteins, or tests for specific genes might be ordered as well. A test called whole genome sequencing, which looks at both protein-coding genes as well as the other 99% of the genome, is not in standard clinical use at this time.

Sometimes a physician will refer you to a genetics clinic, such as those at Stanford or UCSF. Sometimes he or she will order the tests from his own practice.

Stanford: The Medical Genetics Clinic at Stanford Children's Health sees children, adolescents & adults with autism and other developmental disorders for a full genetic work-up.
http://www.stanfordchildrens.org/en/service/genetics/medical-genetics

UCSF: The UCSF genetics clinic is here: https://www.ucsfbenioffchildrens.org/clinics/medical_genetics_and_genomics/. TheUCSF speciality clinic for neurogenetic conditions is here: http://anp.ucsf.edu/patientcare/neurogenetic

Are these tests covered by insurance? There’s no easy answer to that, but with the diagnosis and CPT codes given by the provider, you can call your insurance company to check if the tests are covered. Note to the many of us who have older kids who received a diagnosis long before the clinically relevant findings became more robust—it’s definitely not too late to go back to your clinician and seek a referral for testing. In fact we think it’s very important that you try—you may be missing out on very important information about your older or adult child.

Research projects

Another important avenue to consider is participating in an autism research project. SPARK, sponsored by the Simons Foundation, is one such study.* It’s entirely free and it’s so easy to participate you can do everything from home. No blood draw is needed, instead the affected individual and other family members spit in a tube which is then sent to the study in a pre-paid package. Now if your kid can't spit (as is the case with our kids), you might be able to extract enough saliva with a swab included in the kit. If not, you might need to wait until the study allows for blood draws instead.

According to SPARK, through whole exome sequencing, their analyses reveal an autism-relevant mutation about 8-10% of the time. If one is found, the program will report the information back to you. SPARK has already enrolled over 13,000 families and is seeking to enroll 50,000. The more families that enroll, the more discoveries that can be made.

Enrolling is easy, just check out SPARK at sparkforautism.org.

Conclusion

Sometimes genetic results hit a home run on a personal level, as with Denise. Other times your contribution may reveal something later, as the research evolves. But in all cases your contribution will help sow seeds for future scientific discoveries. Please consider how your family can add to our growing understanding of the autisms by seeking genetic testing, enrolling in Autism BrainNet and participating in genetic research such as SPARK.

Jill Escher and Denise Haas are members of the board of Autism Society San Francisco Bay Area. They are both parents of children with autism.

* Disclosure: Both Jill and Denise are active proponents of autism research. Jill serves as a volunteer on the SPARK community advisory council and independently funds research into genetic and non genetic inheritance in autism and related disorders. Denise is the co-founder of the GNB1 Foundation.

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In memory of Corrine Shelly Aulgur, “One of the towering figures in autism advocacy”

1/15/2018

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We are saddened to report that one of California’s great autism advocacy pioneers and former Autism Society San Francisco Bay Area (SFASA) president and board member Corrine Shelly Aulgur passed away in her sleep in December 2017. Corrine was a strong asset to our autism community and was long a fighter for improved community services for those disabled by autism. All of California’s autism families now benefit from her pioneering dedication to policy reform and autism awareness.

Deeply engaged in local and state advocacy, she was well known with Regional Center directors and legislators. Corrine was one of the parents who confronted state legislators regarding passage of the Lanterman Act by sitting with her children in front of the men's bathrooms at the state capitol when the legislators refused to meet with the group of families. She was one of the outspoken and dedicated mothers who kept pushing until the Lanterman Act was passed and then never stopped after we had the law and the Regional Centers that resulted from it.

“Corrine was relentless in trying to find and create opportunities for our children,” said Sue Swezey, co-founder of SFASA. “I first met her in 1974, when she was president of SFASA and a member of Area Board V. Even as she grew older, she gave unstintingly of her time and energy. She was part of the group of early advocates who paved the way for all the services which CA now provides. She was one of the towering figures in autism advocacy.”

Corrine was also a champion of assisted communication for individuals with limited verbal language, including her son, and was a supportive mother to her step-daughter.

Corrine is survived by her two children with autism and her husband Bob.

—Autism Society San Francisco Bay Area board of directors

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Another rug bites the dust: A mom laments the collateral damage of autism

12/12/2017

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The daily tumult of autism can discombobulate a home and drain a bank account—hidden costs that experts don't even factor in when discussing the economic impact of autism. This family admits it starts shedding cash before dawn.

By Jill Escher

Where did all my kitchen rugs go? It’s 3.20 in the morning and as usual, I’m awake. Not by choice but because, like clockwork, my sweet, nonverbal 18 year-old son with autism woke at 3 and started running, some might say rampaging, around the house. Boom, clomp clomp, tap tap tap, whoosh door opens, slam door closes, ugh.

I pat around my nightstand, reluctantly find my glasses, and head downstairs, not knowing what mischief may have transpired over the past 20 minutes. These wee-hour melees can be a bit like a suspense scene in a not-very-scary horror movie. Open the door… what will we see… probably not a severed head… but….

And there it is. My kitchen rugs are gone.

Jonny’s sitting at the kitchen table with a big grin and four iPhone 3GS’s splayed out before him. Shredded parmesan, once neatly bagged in the still-open fridge, is strewn over the table and floor, as if some yellow snow had fallen from the light fixture. With a well chewed pink toothbrush he taps at his iPhones, all synced to that 1979 tune, My Sharona.

Well, I'm happy he's so happy, but... my half-awake head buzzes, “Where are my rugs rugs, rugs rugs rugs, where did they go go, go go go? My Sharona.”

Over our north neighbor’s fence? Over the east one, aka the Corner of No Return? In the hot tub? It’s now 3.25 a.m. and I’m not exactly in the mood to treasure hunt floor coverings. And I can't help but wonder, Oh great god of missing rugs and whatnot, what reverse jackpots will the chaos of autism bring today?

"What reverse jackpots will the lottery of autism bring today?"

Behold our 19th new sheet set of the year.

Depending on the mood, strength, and obsession du jour of the individual, the daily collateral damage of autism can be staggering. What amazes me is that these types of bills don't even show up when the experts talk about the costs of autism. (See, for example this 2015 study out of UC Davis, which did include lost productivity in addition to care and medical costs.) But we really need to talk about them because they can hugely impact families' quality of life and financial well being.

Just to illustrate how high this officially invisible toll of autism can be, a recent day at our home went like this. About $90 for a new sheet set to replace the otherwise perfect set he shredded (the 19th replacement of the year). A $120 iPad and iPhone repair bill. I do not exaggerate when I say that some weeks we’re a patient of Phone Doctor of San Jose every single day. Then add $240 for the housekeeper because I hardly have time for the Sisyphean task of cleaning up after my main man. In the late afternoon, add $225 for the handyman to replace the cracked casing of a door that had the misfortune to come between Jonny and his cherished iPhones. Finally, just as I looked forward to using them at the ice rink with my autistic daughter that evening, I found my new iPhone 7 earbuds torn into pieces, and poof! goes $29. In all, our daily autism bill can easily top $500.

Nooooooo... Not. My. Piano....

Mattresses shredded. Upholstery ripped. Drywall bitten. Paint peeled. iPads shattered and iPhones dunked. Keys snapped off our piano and MacBooks. Window screens pushed out from their moorings. Down pillows punctured, with the nightmare of tiny feathers settling in all corners. Rugs denuded of their pile. Jackets ripped, shoes chewed, sweatpants with holes the size of grapefruit. Shutter slats chewed, askew and broken, giving our home a whiff of Haunted Mansion. The corner of my car’s front seat gouged into a mini crater of foam.

To be abundantly clear, I don't blame my beloved son one bit. Not a speck of this Tasmanian Devilishness is his fault. You will not find a kinder, gentler, sweeter, more pure and affectionate soul on this planet. He deserves the Nobel Peace Prize just for being him. But, as with many others with autism, he was born with such scrambled or short-circuited brain wiring that he lives in a world of constant cognitive and sensory chaos. Literally a million dollars spent on therapies, and tens of thousands of mom and dad hours working on his skills, have barely made a dent. Through no fault of his own he is simply not endowed with meaningful neural pathways through which to learn by the usual routes of association or experience, or to organize and control himself. Blaming him for chewing on my piano would be like blaming someone with epilepsy for his seizures.

But understandable though it may be, no one can ignore a bill for material casualties easily exceeding $25,000 a year. If we counted all the child care, social services, schooling, therapeutics, and specialized camps and recreation, we’re talking an annual Autism Bill of many multiples of that. And that doesn't even encompass our Double Bill, as we have another child with nonverbal autism as well.

The Good Doctor makes good money. Real-life autism families, however, are often in financial crisis.

For many families, massive expenses like these are just the start of their reverse lottery. Often parents must sacrifice a job, and the entire income stream that come with it, to care for children or adult children. They become unable to save for their own retirements as every excess penny from this dried up cash flow gets diverted to the never-ending Bill. And the new federal tax cuts? I worry that lower social services budgets could hammer these ultra-fragile families even more. The financial damage of autism can be devastating, even a one-way ticket to poverty. And now the situation seems poised to get worse.

"For many families, the financial damage of autism can be devastating, even a one-way ticket to poverty. And the situation seems poised to get worse."

Found!

I know, groan, these are not fun topics. Wouldn't you rather just binge watch "The Good Doctor", which features a supposedly autistic genius protagonist? Perhaps instead of indulging in sugar-coated fantasies this holiday season turn your attention to the hundreds of thousands of families in our country living with harsh and often bank-draining realities of severe autism.

As I edit this blog I get a text from a friend. Her large autistic son just broke her bed, after recently breaking his own, which they had reinforced multiple times with heavy lumber and bolts, to no avail. Two beds dead. Two mattresses with mushed springs. Her Autism Bill of the day started with a whopper of about $2,000. Not to mention all the family's lost sleep and time she must devote to restoring habitability to her home.

Just before dawn, I spy my rugs over the north fence, alongside a pile of missing sheets and towels. Phew, no shopping today, just a retrieval mission. But then my gorgeous Jonny, skipping with his abundant energy and joy, darts into the front yard and yanks the rear windshield wiper off my car, breaking the arm. Ka-ching! And it’s only 6 a.m.

Jill Escher is president of Autism Society San Francisco Bay Area, founder of the Escher Fund for Autism, and a housing provider to adults with autism and developmental disabilities. She is also a former lawyer and the mother of two children with nonverbal forms of autism. She can often be found hiking with her son, ice skating with her daughter, and fixing things.

Disclaimer: The opinions and assertions stated in the SFASA blog are those of the individual authors, may not reflect the opinions or beliefs of SFASA, and do not reflect the opinions of the Autism Society of America. SFASA is an independent affiliate of the Autism Society of America, the leading grassroots autism organization.

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Autism-friendly holiday happenings!

12/4/2017

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Saturday, December 9
AMC Sensory Friendly Films: Coco
Time: See participating theaters
What: AMC is proud to partner with the Autism Society to offer unique movie showings where we turn the lights up, and turn the sound down, so you can get up, dance, walk, shout or sing! Our Sensory Friendly Film program is available on the second and fourth Saturday (family-friendly) and Tuesday evenings (mature audiences) of every month.
More Info: https://www.amctheatres.com/programs/sensory-friendly-films

Saturday, December 9, 2.30-3.30pm
Azure Concert at Stanford: Holiday Jazzmatazz, Stanford
ALMOST SOLD OUT
Campbell Recital Hall at Braun Music Center, Stanford University
Our popular annual holiday jazz fest! All behaviors welcome at this Azure concert.
Learn more at autismfunbayarea.org.
Free (but reservations required)
Tickets: https://azureholiday.brownpapertickets.com/

Sunday, December 10, 2.30-3.30pm
Azure Concert at Stanford: Holiday Jazzmatazz, SF
St Cyprian's Church
Our popular annual holiday jazz fest! All behaviors welcome at this Azure concert.
Learn more at autismfunbayarea.org.
Free (but reservations required)
Email info.autismfunbayarea@gmail.com to reserve your space.

Sunday, December 10, 11am
Suite Nutcracker with the Menlowe Ballet, Menlo-Atherton HS
A sensory-friendly Nutcracker! 45 minutes of highlights from the holiday favorite, for children and adults of all abilities and their families. This performance features a friendly, supportive environment for families of a loved one who has special needs. Traditional theater rules are relaxed and audience members are welcome to verbally express their delight, play with toys they have brought for comfort, and exit/re-enter the theater as needed. $20.
Tickets: http://menloweballet.tix.com/Event.aspx?EventCode=993881

Thursday, December 14, 7pm (time subject to change)
Nutcracker with Peninsula Ballet Theater, Redwood City
Fox Theatre
2215 Broadway, Redwood City
A very special dress rehearsal event for our special needs audience! Free with optional donation to the Pacific Ballet Theater.
Register here: https://www.brownpapertickets.com/event/3153309

Sunday, December 17, 1:00-2:30pm
San Francisco Ballet Sensory Friendly Family Workshop
SF Ballet Building, 455 Franklin Street, SF
A special opportunity specifically for families with children with autism or related disorders. Excerpts from SF Ballet’s Nutcracker, plus, interactive dance component with Miss Kristi, in-studio performances, photos with dancers, free autographed posters, pre-visit social stories guide, activity room and quiet room.
$10 suggested donation. Maximum 110 guests.
GET TICKETS

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Your child with autism is arrested: Now what? Chris Darden walks parents through the traps of the criminal justice system

10/24/2017

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Christopher Darden

At our recent event, Chris Darden and his sister shared their family's personal story of autism and injustice in California's criminal justice system. Darden also provided advice to parents on ways to protect their children should they be arrested.

By Dhruv Joshi

On October 7, 2017, about 50 people gathered at the Ed Roberts Campus in Berkeley to listen to information about the criminal justice system from Christopher Darden, criminal defense attorney and former prosecutor. The program began with Mr. Darden’s sister first describing the experiences of her son. Christopher Darden then commented on the situation of his nephew and advised parents on various ways to protect their adult children with developmental disabilities should they be arrested.

Mr. Darden's nephew is a tall, handsome young black man with autism. About ten years ago, the family was harassed by a racist neighbor over a period of time. Their car and home were vandalized on a number of occasions. Their puppy was poisoned and killed. Complaining to the police did not help. Moreover, the police frequently stopped their car for no reason. The young man was then in his 30s. Deeply distressed by the police mistreatment and yet cognitively challenged, he hoped to help his family by leaving threatening notes on police cars. Police did not respond to the notes. Neither did they contact his mother. And the police continued stopping the family car for no reason. After a year of lack of response by the police, the young man thought that maybe a judge would help. He visited the courthouse multiple times. Since he didn’t receive help from the judge, he left notes threatening the judge. He went to the courthouse restroom and burned a paper towel to get attention.

He was arrested and charged with 13 felony counts, translating into a possible sentence of 25 to 30 years. Yes, with his cognitive challenges, the young man did strange things thinking he was protecting his family. But 25 years in jail for that! There were two alternatives: trial by jury or by a judge. Not trusting the jury situation, the family took the judge trial. The judge set the bail at two-thirds of a million dollars! He had to go to jail. Over the next two years many court dates were set and postponed. Most of the court proceeding was carried out behind closed doors with the judge talking with the prosecutor and the defense attorney while about 30 supporters sat in the court. The young man had two birthdays in Santa Rita jail. While he was in jail his family and friends supported him in many ways. They visited him on every single visitation day, sent birthday cards, went to court hearings, and wrote letters to the court on his behalf.

Yes, with his cognitive challenges, the young man did strange things thinking he was protecting his family. But 25 years in jail for that!

All of the advocacy helped tremendously. It educated the judge about the unusual circumstances of the case. A 25 year sentence went down to 7 years. Then was reduced to 3 years plus 4 months! On the sentencing day, the judge noted that in his experience no family had ever fought so hard on behalf of a defendant. After doing time at San Quentin and Corcoran prisons, the young man came home from jail. Since then he has held various jobs. Despite his autism, he held on to a job for two years. Though it is hard for him to obtain a job due to his criminal record, he recently secured a position at a Taco Bell restaurant through his own efforts.

The mother’s moving account was followed by Mr. Darden’s perspective on the case from the vantage point of a 35 -year-long law career that included serving as a prosecutor and a private defense attorney. He pointed out that developmental and intellectual issues take time to evaluate yet the court has no time to assess whether the accused is capable of standing trial or not. Very frequently, defendants with developmental disabilities are treated as capable in the court. Moreover, the judges’ hands are tied by laws that prescribe mandatory minimum sentences.

Darden pointed out that developmental and intellectual issues take time to evaluate yet the court has no time to assess whether the accused is capable of standing trial or not.

Very frequently, defendants with developmental disabilities are treated as capable in the court. Moreover, the judges’ hands are tied by laws that prescribe mandatory minimum sentences.

Mr. Darden posited that due to his sister’s relentlessly strong advocacy the judge realized that her son is a human being and a person with limited ability to understand the consequences of his actions. In most cases involving a developmentally challenged defendant, the court may never find out about their developmental deficiency. Moreover, when the judge sets the bail, s/he assumes that the charges are true. As in this case, most of the time the bail is set very high. The system jails defendants for not being able to afford astronomical bail amounts regardless of their guilt or innocence.

Mr. Darden then talked about the steps parents should take if their autistic child is arrested:

1. Contact the police immediately. Find out what the specific charges are. Is it a misdemeanor or a felony?

2. Get a lawyer. Understand what the charges could be and the amount of possible bail.

3. Show the police the record of the child’s disability.

4. Understand Miranda Rights. “You have the right to remain silent…” An intellectually challenged person doesn’t understand the Miranda warning. They should not be interrogated by the police. But the police will try to interrogate them anyway. If the defendant is interrogated after the police were notified of the defendant’s developmental or intellectual disabilities, the defense lawyer might be able to get the case dismissed.

5. Understand that the police are trained to elicit confession, rightly or wrongly. They can lie. They can make up possible scenarios. Intellectually challenged defendants may confess to crimes they did not commit due to wanting to please the police, not understanding their rights, or not knowing about police tactics.

6. Start advocating for the defendant before the first court appearance. Send certified letters explaining the unusual circumstances of the disabilities to lawyers, prosecutors and judges as soon as possible. Explain the situation to the defense lawyer. Make sure the defense lawyer does not take the easy way out by not presenting the unusual circumstances to the court.

7. During the first appearance in the court, let the judge know about the unusual circumstances and whether the defendant is conserved. Present the judge with the defendant’s developmental evaluations and assessments, Individualized Educational Plan, and other supporting records. Show how the defendant could be supported positively in the future without psychiatric confinement. Paint a positive picture of the future of the defendant.

8. Before the bail is set, make every effort to present the above information to the judge so that the bail is set at a reasonable amount. Once the bail is set, it is very hard to change the amount.

9. Beware of the restrictions that probation presents. Just one strike against the person could possibly return him or her to jail without the possibility of bail.

10. Lastly, after the trial, get the entire case file and save it for the rest of the defendant’s life.

Mr. Darden recounted several cases involving developmentally disabled persons. One story involved an autistic young man who shook, mumbled, and laughed at inappropriate times during his court hearings. He was told to stop. But he could not. So, he was handcuffed. That made his behavior even more erratic. The jury had no knowledge of his disability. When the jury could not agree on a verdict, the judge sent the jury back for more deliberations. This time the jury convicted the defendant, possibly due to his laughing at the wrong time in the court.

Darden thinks the system does not know what to do with intellectually disabled persons. It treats them as it treats others. Jails are filling up with larger and larger numbers of such persons.

Mr. Darden thinks that the system does not know what to do with intellectually disabled persons. It treats them as it treats others. Jails are filling up with larger and larger numbers of such persons. To counteract a lack of understanding by the police, public prosecutors, judges, jurors, and lawyers, he advises us to educate them about developmental and intellectual disability issues. He stressed the importance of seeking psychiatric and developmental evaluations, and pursuing all opportunities to explain the unusual circumstances to the court. He also opined that mere education alone may not affect the jurors. Ultimately jurors are asked to look at the hard evidence. Also, a defense lawyer cannot influence the jury by having “diminished capacity” introduced into the court records. The defense lawyer can explain the unusual circumstances to the court and ask for psychiatric evaluation. At the end, Mr. Darden implored the community to think about how to educate the various players in the judicial system and work to improve the system.

Mr. Darden implored the community to think about how to educate the various players in the judicial system and work to improve the system.

The presentation generated a constructive discussion among the attendees which included staff from three different regional centers. Regional Centers are now more aware and better prepared to assist clients who may need help navigating the criminal justice system. For example, many regional centers now have forensic specialists on staff. Families are urged to contact their Regional Center immediately if their family member with developmental disabilities is arrested or becomes involved in the criminal justice system.

Our deep gratitude goes to the Darden family for sharing their experience and expertise so that others may be helped.

Editor's note: See the Autism Society San Francisco Bay Area Civil Rights Project page for more information on the topic of criminal justice and autism.

Disclaimer:
Autism Society San Francisco Bay Area (SFASA) provides information but this information does not constitute medical or legal information. We provide general information about autism as a service to the community. The information provided by us or our presenters is not a recommendation, referral or endorsement of any resource, therapeutic method, or service provider. The information does not replace the advice of medical, legal, or educational professionals. We have not validated and we are not responsible for any information or services provided by third parties. Individuals must use independent judgment and assume personal responsibility for what they do with the information provided. Inclusion of any organization does not imply endorsement, and omission does not imply disapproval.

Autism Society San Francisco Bay Area is a 501(c)(3) nonprofit. Tax ID # 94-2978690.
Autism Society San Francisco Bay Area
P.O. Box 249
San Mateo, CA 94401

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10 Fabulous Bay Area Autism/DD Events in Oct, Nov and Dec!

10/21/2017

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Friday, October 27, 6-8:30pm
Living Unlimited's jazz and networking party, East Bay
Northbrae Community Church at 941 Alameda Avenue in Berkeley.
Transistion/Living Options Discussion Group with an “Azure” party for special needs families. All behaviors are welcome! In the Parlor we’ll have live jazz and refreshments – volunteers will help with shadowing our kids, while parents advance discussions on transition options for their children. Brought to you by Living Unlimited. Free.
More info: http://living-unlimited.org/
RSVP: studioajea@sbcglobal.net.

Saturday, October 28, 4.30-6pm
Trunk or Treat, Pleasant Hill
2093 Oak Park Blvd, Pleasant Hill
For children with special needs and their families. Trick or treating, games, photo booth, costume contest, Kindle raffle.
$15 (more at the door)
RSVP: Allinneed.org/sign-up

Friday, November 3, 6-8:30pm
Living Unlimited's jazz and networking party, SF
St. Cyprian’s Church at 2097 Turk Street in San Francisco.
Transistion/Living Options Discussion Group with an “Azure” party for special needs families. All behaviors are welcome! In the Parlor we’ll have live jazz and refreshments – volunteers will help with shadowing our kids, while parents advance discussions on transition options for their children. Brought to you by Living Unlimited. Free.
More info: http://living-unlimited.org/
RSVP: studioajea@sbcglobal.net.

Friday, November 17, 7-10pm
Pomeroy Live presents Salsa and Dancing, SF
SUSANA Y SU ORQUESTRA ADELANTE
Pomeroy Recreation & Rehabilitation Center
207 Skyline Blvd., San Francisco CA 94132
Come enjoy an evening of live music and light refreshments at the Pomeroy Center! Pomeroy Live events are open to people of all ages, with and without disabilities. The venue is fully accessible. All behaviors are welcome; a "chill out" space will be available at all events for those needing it. This acclaimed salsa band and its dynamic leader will provide an hour of dance instruction, followed by a performance for listening and dancing. Join us!
Free for persons with disabilities, $5 caregivers, $10 general
TICKETS

Sunday, November 19, 7-8:15pm
Pamela Frank Fundraiser for Autism, SF
San Francisco Conservatory of Music
Carol H. Hume Concert Hall
50 Oak St, San Francisco, CA 94102
DON'T MISS IT! We are honored to have violin superstar Pamela Frank hold a fundraiser that will benefit three autism organizations, including Autism Society San Francisco Bay Area! Enjoy an evening of outstanding music and supporting a great cause.
$35
Tickets: https://sfcm.edu/events/pamela-frank-violin-benefit-recital-autism-organizations

Saturday, December 2, 8am-5pm
SFASA Annual Conference on Adult Autism at Stanford
Stanford University LKS Center
SFASA's annual conference on adult autism featuring 40 speakers and 400 attendees.
Tickets $35-75
Details and registration at sfautismsociety.org

Sunday, December 3, 11am-12pm
Azure Concert at Stanford: The Tesla Quartet, Stanford
Campbell Recital Hall at Braun Music Center, Stanford University
The award-winning Tesla Quartet brings refinement and prowess to both new and established repertoire. All behaviors welcome at this Azure concert.
Learn more at autismfunbayarea.org. Get tickets starting 11/10/17
Free (but reservations required)
Tickets: https://azuretesla.brownpapertickets.com/

Saturday, December 9, 2.30-3.30pm
Azure Concert at Stanford: Holiday Jazzmatazz, Stanford
Campbell Recital Hall at Braun Music Center, Stanford University
Our popular annual holiday jazz fest! All behaviors welcome at this Azure concert.
Learn more at autismfunbayarea.org. Get tickets starting 11/10/17
Free (but reservations required)
Tickets: https://azureholiday.brownpapertickets.com/

Sunday, December 10, 11am
Suite Nutcracker with the Menlowe Ballet, Menlo-Atherton HS
A sensory-friendly Nutcracker! 45 minutes of highlights from the holiday favorite, for children and adults of all abilities and their families. This performance features a friendly, supportive environment for families of a loved one who has special needs. Traditional theater rules are relaxed and audience members are welcome to verbally express their delight, play with toys they have brought for comfort, and exit/re-enter the theater as needed. $20.
Tickets: http://menloweballet.tix.com/Event.aspx?EventCode=993881

Thursday, December 14, 6.30pm (time subject to change)
Nutcracker with Peninsula Ballet Theater, Redwood City
Fox Theater, Redwood City
Thanks to PBT for opening its dress rehearsal of the Nutcracker to our Azure special needs audience.
Free, though a donation for AFBA and PBT at the door is appreciated.
Tickets: please check back at AutismFunBayArea.org or join the FB group for the ticket announcement https://www.facebook.com/groups/AutismFunBayArea/

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The Decline and Fall of "Autism"

10/16/2017

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After Simon Baron-Cohen suggests autism lose its status as a disorder and instead be considered a variant like left-handedness or homosexuality, this stupefied mom marvels at the collapse of meaning in the word “autism.”

by Jill Escher

I’m the mom of two kids with profound neurodevelopmental impairments, labeled by multiple esteemed practitioners as “autism.” At ages 18 and 11, they can’t read, write, or talk. They have never played with a toy or dressed themselves. They don’t know their birthdays, much less what “birthday” might mean. They are both gorgeous, healthy and utterly delightful, with smiles and personalities that light up the room, but because of their profound mental dysfunctions they will require one-to-one 24/7 assistance for the entirety of their lives, all at astronomical expense to us and society. In short, no reasonable person denies that they suffer walloping mental disorders of the most alarming magnitude.

So imagine my shock reading “Neurodiversity – a revolutionary concept for autism and psychiatry," by Simon Baron-Cohen, professor of developmental psychopathology at University of Cambridge and the current president of the International Society for Autism Research. In it, he suggests that the field of psychiatry should perhaps view autism as a variant of normal along the lines of homosexuality or left-handedness, rather than as a mental disorder where brain and behavior involve some sort of impairment.

He argues autism may be neurodiversity rather than pathology because it is “associated with cognitive strengths” and is just a form of “diversity in the set of all possible brains.” In his view, the underlying cognition and neurobiology in autism cannot be said to be “dysfunctional,” just “different.” He contends “there is no single way for a brain to be normal, as there are many ways for the brain to be wired up and reach adulthood.”

Say what? How could anyone—much less a person seated atop one of the highest altars of authority and influence in the world of autism—so trivialize my children’s and others’ disabilities by likening them to traits like handedness which are irrelevant to basic mental functioning? Or shrug off the often drastic consequences of abnormal neurophysiology? Hey, my kids have certain strengths, too, like love for music, gentle empathy, and striking athleticism, but those hardly negate the fact my son might eat his shoe. Moreover, isn’t the very purpose of psychiatry to identify and address serious mental impairments that interfere with normal functioning rather than to offer feel-good kumbaya?

Perhaps my delightful yet nonverbal and severely disabled kids really shouldn’t be labeled as having the disorder of autism, as Baron-Cohen seems to suggest. But obviously that would behoove us to define the devastating whomp of a disorder they do have.

It all depends on how you define “autism”

After some fuming, I went back and parsed the editorial to try to understand how Baron-Cohen, a researcher I quite like, could pen something so bizarre. And it hit me. Of course, his autism is not my autism. His version is customized and narrowly drawn, a trait involving quirky social shortcoming, and not a pervasive disruption of development as described by Kanner, as understood through the decades of the DSM, and as understood by me. Though somewhat buried in his argument, it seems he would not deny that people like my kids have disorders, but that he would shoo them away from his conception of autism. He writes:

"Others may say that a child who has language delay or severe learning difficulties is not an example of neurodiversity but has a disorder, and I would support their demand for treatments to maximise the child's potential in both language and learning. But again, although commonly co-occurring, these are not autism itself."

In other words, his autism is a bit like a maraschino cherry that may perch atop an ice cream mound of other dysfunctional neuro-stuff that’s not autism. It’s a social quirkiness that can be separated from patent functional impairments.

This is a rather different spin on autism, but okay, why be surprised? Today, semantic anarchy reigns in AutismLand. Your version of “autism” is probably different from the next guy’s. On the TV show The Good Doctor, autism is a genius surgeon, but in my friend Anna’s house, it’s a nonverbal young man who bashes his head 200 times a day. It has come to mean articulate and capable self-advocates, as well as Sonja who at 18 regularly poops on the floor and smears it. It means a focused young woman writing complicated software for a tech company, as well as Marco who can only use a computer to press “want to eat.” Some write of autism as a trait that's a “gift,” while to my friend Alex it's a brutal disorder involving shrieking and ripping the skin off his face. Stephen Shore, a great guy who serves on the board of Autism Speaks, calls his autism a “super power,” while ace diagnosticians such as Cathy Lord, PhD, insist “autism is defined by having a significant impairment.”

When one realizes that autism is a purely behaviorally defined disorder, one must marvel that so many contradictory and divergent behavioral realities could be lumped under one term. It’s arbitrary, self-imposed semantic lunacy, as absurd as if we called both the common cold and acute pneumonia "the sniffles.”*

Add to this tension that “autisms” have countless genomic and environmental precursors and myriad neurobiological pathways, all associated with this smorgasbord of traits. To quote researchers Lynn Waterhouse, Eric London and Christopher Gillberg, autism lacks “construct validity” and is an “arbitrary unscientific ‘convenient fiction’” that is blocking progress in research. Or as Mary Coleman, MD, Lifetime Achievement Award honoree at this year’s IMFAR conference, stressed, autism is simply "not valid as a diagnosis," but rather nothing more than some "overlapping clinical presentations" for myriad different biological conditions with different causes and processes and outcomes.

Our feeble autism lexicon debases our dialogue, fuels unnecessary infighting, and makes a mockery of research. Something must be done. But Baron-Cohen’s approach, while well meaning, would raise the critical question—if people like my kids don’t have the disorder of autism, then what disorder do they have?

If my kids don’t have autism, what do they have?

His editorial doesn’t say. This is a rather glaring omission since his version of autism is the least of my kids’ and many others’ problems. What disables them goes far deeper—killer neurodevelopmental disconnection that keep their brains looping on the same simple tasks over and over, thwarting almost all learning and permanently incapacitating them in multiple dimensions, including communication, social understanding, sensory processing and behaviors. And the name for this profound affliction if not autism…?

In the end, however, I think Baron-Cohen’s editorial is important. He’s right, we should stop pretending there’s such a disorder as “autism.” We urgently need a menu of clear and potent terms that will tie to appropriate medical, educational, and societal responses for all those affected. The professor’s admirable yearning to de-pathologize a certain sector of the autisms adds to the chorus of voices seeking fresh, coherent diagnostic and conceptual structures that reflect our wildly diverse neuro-realities. Good for him. Let’s keep working on that.

* Footnote: SFASA co-founder and board member Sue Swezey notes that Autism Society of America founder Dr. Bernard Rimland “would smile at this analogy.” She says: “He repeatedly cited the fact that, at the turn of the 20th century, upper-respiratory infections were collectively described as ‘the fevers.’ It was not until much later that research teased out the nature, severity, and appropriate treatment for each one. His point was that there is no such single entity as ‘autism’ per se, but that the many conditions lumped under the same label require far better identification and treatment.”

Jill Escher is president of Autism Society San Francisco Bay Area, founder of the Escher Fund for Autism, and a housing provider to adults with autism and developmental disabilities. She is also a former lawyer and the mother of two children with nonverbal forms of autism. Some names of people affected by autism in this commentary have been changed to protect privacy.

Disclaimer: The opinions and assertions stated in the SFASA blog are those of the individual authors, may not reflect the opinions or beliefs of SFASA, and do not reflect the opinions of the Autism Society of America. SFASA is an independent affiliate of the Autism Society of America, the leading grassroots autism organization.

33 Comments

Catastrophic Fire a Tragedy for Autism/DD Community

10/12/2017

1 Comment

But you can help.

The devastating wildfires in Northern California have claimed at least 28 lives and many areas are still being evacuated. The Sonoma Developmental Center was evacuated (get updates here), and a beloved school for students with higher functioning autism, Anova, burned to the ground.

You can assist Anova with their GoFundMe campaign here.

Here also is a list of organizations accepting donations to support victims of the fires.

1. United Way of The Wine Country
Click here to donate.

2. Bay Area pro sports teams’ fundraiser
Click here to donate.

3. Redwood Empire Food Bank
Donate or sign up to volunteer.
For more information visit its website.

4. Sonoma County Resilience Fund
Click here to donate online.

5. Napa Valley Community Disaster Relief Fund
Click here to donate online.
For more information, visit its website here.

6. Open your home via Airbnb
If you have available housing in the area, consider making it available. Airbnb is facilitating housing for displaced community members and relief workers deployed to help.

7. Donate via GoFundMe
GoFundMe has a page dedicated to the many individual crowd-sourcing campaigns that have been established since the fires broke out on Sunday. They include fundraisers for families and businesses.
Click here to donate online.

8. Four-county fundraiser
With this fundraiser, you can specify which of four counties — Sonoma, Napa, Mendocino or Lake — you would like to support, or mark that you want to support all four.
Click here to donate online.

Locally, The Press Democrat has also created a list of other ways to help here, and here’s another list being updated by NBC Bay Area.

Credit to the San Diego Tribune for this helpful list.

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Kissing Monster on the Loose in San Jose

9/28/2017

2 Comments

What to do when a handsome young man with nonverbal autism takes to smooching strangers?

Left: Jonny giving Mom “The Treatment.” Right: About to plant a shoulder-smooch on Dad.

by Jill Escher

Perhaps the most notable trait seen in autism is what I call the “loop.” Lacking the flexibility and florid connectedness of normal brain wiring, autism minds often get stuck on a narrow neurological track. This can lead to repetition of certain behaviors, or obsessions over certain topics, maybe trains, movies, or animals of Tasmania, sometimes for days, weeks, months, years, or decades at a time.

For my 18 year-old son with nonverbal autism, loops have included repeatedly listening to Elton John songs (tell me, grey seal, how often do I have to listen to you?), throwing iPods over the fence (ka-ching…), eating nothing but kale chips, shredding books, mushing toothpaste into carpet, plucking keys off my laptops, and countless other patterns involving varying degrees of allure and ruin.

His latest loop, though, is a doozy.

Forget all the myths about people with autism lacking emotion. My Jonny is a born love bug. Ever since he was little, we called it “Getting the Treatment”: Jonny would plop himself on us, smile broadly, utter a low giggle, and plant an extended smooch on our heads, shoulders, or backs. Then he was “The Lamprey,” affixing full mouth on our upper arms in an unusual and fairly hilarious display of affection.

Well, lately this playful brand of Jonny love has overflowed its usual family banks, engulfing complete strangers we may encounter on the street, on hiking trails, or at the grocery store. Jonny will dash ahead of me, happily skip along while tapping at his iPad (latest looping song is Bridge Over Troubled Water, by the way), and plant one on the shoulder of an unsuspecting stranger.

When he darts away I of course try to contain him, yelling, “Come back to Mommy!” “Stop, Jonny!” “Wait for Mama!” Or “No kissing, Jonny! No touch!!” Unfortunately, owing to a bum knee I can’t keep pace with his sprints. And since he’s built like a hunky quarterback, I am powerless to physically restrain him. So when a surreptitious kiss ultimately gets planted, I can only let the apologies flow. “Sooooo sorrrrrrrryyyyy, sir, he has autism.”

And I am genuinely sorry— if I knew nothing about this mental disability, I’m sure I would be rather startled by a sudden smooch from a young man who by all appearances could be the local Homecoming King.

The majority of the time people are very understanding. Responses have ranged from, “Oh he’s so cute,” to “Yeah, I figured something was up with him.” But sometimes people are clearly flustered and stunned. Again, I can’t blame them.

So, I ask, what is a mom like me, living with and caring for a man with immensely complicated behaviors and extremely impaired cognition, to do? Let’s walk through the options.

First, I could keep him at home, sort of in house arrest, away from the public. Well, that’s not viable. Jonny is energetic and loves going out in the community. And he’s entitled to it. He loves our walks, hikes, trips to the playground, and heading out for his favorite smoothie. The era of hiding our developmentally disabled in institutions or basements is long, long gone. Like most autism parents I have no intention to condemn him or his younger sister, who also has a severe form of autism, to a life of hiding.

Second, I could hire a fleet-of-foot muscle-bound guy to accompany us everywhere we go. Again, not a realistic option. The logistics would be impossible and the expense immense.

Third, I could train Jonny to not kiss or touch other people. Believe me, I wish this were easy. We and his teachers and therapists work on his behaviors continuously, but lessons can take years to sink in. Entire treatises and courses have been written about teaching socially acceptable conduct to people with severe forms of autism, but success often eludes even the most expert people in the field. There’s no magic bullet.

I was recently talking with a USC Law School professor friend about how impulsive behaviors like Jonny’s seem to be increasingly landing people with autism in the muck of law enforcement. We see more police encounters, jail holds, and prosecutions of people with autism for acts that involved minimal consciousness, choice, and control. My professor pal understood these cases as more akin to someone having a seizure than a master criminal plotting to rob a bank. A revered legal maxim sprang immediately to his mind. “People need to understand,” he said, “that sh*t happens.”

And he’s exactly right. Sometimes volcanoes erupt. Sometimes hurricanes swirl. Sometimes meteors fall from the sky. Sometimes people with seizures flail and hit. Sometimes people with Tourette's tic and yell. Sometimes people with autism engage in behaviors that scare, startle, or confuse others. The puzzling acts that sometimes arise from the short-circuited neuro-loop of autism require acceptance, understanding and patience.

A lot more patience. Our world is very different than it was 20 or 30 years ago. In 1990, Santa Clara County, where we live, saw 147 strictly-defined autism cases in the Developmental Services system. Today, the county has experienced a staggering increase, to about 3,800 such cases. Similarly, the state has seen an explosion from about 3,000 cases in the early 1980s to nearly 100,000 today. Though we may debate the sources of this increase (no, it’s not vaccines), we can all agree that the data show autism is now part of every neighborhood and school district, and has become part of the fabric of all of our daily lives. Behaviors that were once rare are now abundant. Now, I would fully agree that when inappropriate behaviors pose a danger to others (let’s say, a man obsessed with lighting matches, or kicking people), supports and treatments should be put in place to keep everyone safe. But those cases are the exception, and not the rule.

So welcome to the New Normal, which may involve the occasional encounter with a random kissing bandit. Know that the alternatives are few, and parents, caregivers and people with autism are almost always doing their best. An extra smooch never really hurt anyone, anyway.

Jill Escher is president of Autism Society San Francisco Bay Area, founder of the Escher Fund for Autism, a housing provider to adults with autism and developmental disabilities, and the mother of two children with nonverbal forms of autism.

Related:

Yes That's a Large Handsome Man in the Women's Room, Now Get Over It

The opinions and assertions stated are those of the individual authors, may not reflect the opinions or beliefs of SFASA, and do not reflect the opinions of the Autism Society of America. SFASA is an independent affiliate of the Autism Society of America, the leading grassroots autism organization.

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ALERT: Minimum wage mismatch threatens closure of adult autism/DD programs, support AB 279!

8/15/2017

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By SFASA

Tens of thousands of adults with autism and developmental disability depend on adult day programs, supported living services, or other programs for essential life care services. These community-based programs replaced institutionalization for those with DD unable to care for themselves, navigate daily living skills, or earn a living.

The direct support workers employed by these community-based agencies typically earn minimum wage for what is often demanding, and sometimes dangerous work. Many communities in California have passed minimum wage laws that exceed state minimum wage, which is the amount covered by state reimbursement to the DD programs. As a consequence, programs in these "super minimum wage" jurisdictions are unable to pay legally-mandated wages to their staff. The result? Unless the state matches the "super minimum wage" these essential, life-saving programs may need to close, leaving countless hundreds or thousands of severely cognitively and functionally disabled adults with no supports.

Fortunately AB 279 could bridge that financial gap. Here's what one service provider told her clients:

"We'd like to share with you recent changes to the law that will have a direct impact on services being rendered to our clients. San Jose minimum wage ordinance went into effect July 1, 2017 to $12.00 per hour. In 6 more months, it will again increase another 15% to $13.50. Unfortunately, Governor Brown killed the bill on his last budget that would have increased the difference in the cost to service providers that the city has mandated. Service providers are set at fixed rates and staff to consumers ratios. Service providers will have little recourse to either reduce services in other areas or even close. An overall 20% increase of payroll cost to direct care services is not sustainable." (Emphasis added)

So PLEASE TODAY FILL OUT THE TWO LETTERS BELOW AND SEND THEM IN. The AB 279 Fact Sheet is also linked below. THANK YOU!

Letter to Lara

Letter to De Leon

AB 279 Fact Sheet

AB 279 Facebook page

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SARC announces move to a new location in South San Jose

8/9/2017

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Hello friends and families, after 28 years at our Campbell location, it is time for us to say goodbye. Frankly, we could no longer afford the rent in what is now a vibrant Campbell.

Our new address is 6203 San Ignacio Avenue, San Jose 95119. It is in South San Jose near the 85/101 interchange. Bus line 42 stops in front of our building and the light rail ends .8 Mills from our facility. We will keep all of the same phone numbers so there will be no need to memorize new numbers.

San Andreas Campbell will officially close on Thursday, August 10th at 5pm. On Friday the 11th, our satellite offices will remain open and we will have on call managers ready to take urgent calls.

The San Jose office will not be open until Wednesday, August 16th at 8am. However, our phones will be operational so you will be able to contact us if needed on Monday the 14th and Tuesday the 15th. San Andreas occupies the entire 2nd and 3rd floors of the building, so the sarc lobby will be on the 2nd floor. There are 3 elevators ready for use.

In addition, the Gilroy office will be closing and all of the workers will be transferred to the San Jose site. The Gilroy office will close officially on Friday, August 25th.

Letters will go out to all families next week.

Thank you in advance for your patience as we close our Campbell and Gilroy facilities and open our new San Jose headquarters.

Javier Zaldivar,
Executive Director
San Andreas Regional Center

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Berkeley Zoning Board Approves Project Including 11 Units for Adults with Intellectual Disabilities

8/3/2017

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By SFASA

Berkeley’s Zoning Adjustments Board approved the construction of a new six-story, mixed-use building on 2527 San Pablo Avenue, the site of a current vacant service station. The project will include 63 housing units total, including 11 below market rate units reserved for persons with intellectual and developmental disabilities. The ground floor will provide commercial space and restaurant use.

The applicant, architect Rony Rolnizky, said the inclusive and multi-use concept was inspired by his son, who has a severe intellectual disability and requires round-the clock care. “All my life, all my son’s life, I’ve been trying to get him out into the community,” Rolnizky said at the meeting, when presenting the building plans. “What I would like to do … is to create this as a project where people (with) intellectual disabilities can live. I don’t want to say this is a project for (people with) disabilities — it’s a project for everybody.”

“This project walks the talk of Berkeley,” said temporary board appointee Savlan Hauser at the meeting. “It reflects our values and I will be very proud to see this project exist.”

Autism Society San Francisco Bay Area wrote a letter to the Board in strong support of the project in light of the growing and dire need to expand housing opportunities for the burgeoning population of adults with autism and I/DD.

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The Miracle Project Comes to the Bay Area: A Few Spots Left!

8/3/2017

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Workshop August 14-18 in Redwood City

A few spots are available for young adults who want to participate in a week-long acting workshop with Emmy award winner Elaine Hall. The workshop will be held from August 14-18 at the Wings campus in Redwood City. For more information visit http://www.decoloresarts.org/miracleproject/

Miracle Project workshops provide hands-on opportunities for disabled individuals to explore acting, singing, dancing and theater productions focused on social development.

Email: info@decoloresarts.org or call (415) 578-0410

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Kissing Monster on the Loose in San Jose

ALERT: Minimum wage mismatch threatens closure of adult autism/DD programs, support AB 279!

SARC announces move to a new location in South San Jose

Berkeley Zoning Board Approves Project Including 11 Units for Adults with Intellectual Disabilities

The Miracle Project Comes to the Bay Area: A Few Spots Left!

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