“Mentally Incompetent to Vote” — How Adults with Severe Autism Are Systematically Disenfranchised

“To my mind, we must do better than deny our most severely disabled citizens the ballot and call it a day. “

By Jill Escher

When my son Jonathan was evaluated by a court investigator as part of the conservatorship process shortly before he turned 18, she probed for evidence that he might be competent to vote.

In California, the bar is actually pretty minimal. The court presumes that a person subject to a conservatorship (what you would call a guardianship in other states) is competent to vote. But this person may be declared “mentally incompetent” and therefore disqualified if the court, or in rare cases, a jury, finds by clear and convincing evidence that the person cannot communicate, with or without reasonable accommodations, a desire to participate in voting.

But Jonny has a form of autism so severe that in truth, he cannot communicate any desire to participate in voting — through words, AAC, signs, gestures, or even grunts. Although it’s impossible to know what thoughts might be popping in the deep recesses of the mysterious Jonny mind, there is no evidence he has any comprehension of any concepts relating to government, voting or democracy. Jonny’s measurable cognitive level is all of about 18 months, on a good day.

A Probate Court investigator probes for my son’s abilities, including the right to exercise the vote.

So when the court investigator found Jonny to be “nonresponsive,” she was not incorrect. She recommended that the court find him ineligible to vote. (You can see a snippet posted at right). And at the conservatorship hearing I did not contest the recommendation—to have told the judge that I had evidence Jonny had a desire to vote would have amounted to perjury.

So while many adults with autism, particularly those who are verbal and cognitively blessed, will no doubt retain their right to vote, those on the severe end of the spectrum risk having that right stripped away.

To my mind, we must do better than deny our most severely disabled citizens the ballot and call it a day. Yes, I know, I have 100 much more urgent worries than whether Jonny would vote in favor of this school bond or that state high-speed rail proposition, or this council candidate or that presidential hopeful. But he is still an American, he still lives in a political system that depends on the will of the people to enact policies on local, state and national levels.

And I would say that perhaps no other group needs robust, informed political representation more than the severely autistic. For it is this hyper-vulnerable population — unable to care for themselves or earn a living, unable to create a family, possessed of complicated behaviors and cognitive limitations — beyond almost all other disability groups, whose lives depend on good government policy. For them, government policy is about survival.

Now, if the disenfranchised group were small, perhaps I wouldn’t care much. But this developmentally disabled autistic population is exploding. In California, fully 2% of all males born in the state now end up as autism cases in the Developmental Services system. About 120,000 Californians now qualify as having Developmental Services-eligible autism, up from about 3,000 in three decades ago. These are massive (and, alarmingly, ever-growing!) numbers that matter, voices that collectively can make a critical difference in policy matters. (Side note that the autism explosion, likely our most urgent public health and social services crisis today, has hardly made a blip in any presidential debate—this inexcusable apathy alone should jar our slumbering selves to push for autism suffrage.)

So I think the answer here is not to pretend that adults like Jonny know the difference between Donald Trump and Bernie Sanders—a trip to the ballot box with Jonny would be a Ouija board mockery of the democratic process — but rather, to create a system for proxy voting that uses the same principles as Conservatorship proceedings. The proxy (usually the conservator, if a loving family member), would need to be entrusted by the court to vote in the best interests of the autistic adult. Already the law legally mandates conservators to act in the best interests of the conservatee, a duty that from what I can tell, family conservators take extremely seriously. So this would hardly be a big step.

Now, I suppose a proxy could abuse the power to essentially use the vote for his or her own purposes, but this small risk I think would be outweighed by the value of adding the severe autism vote to the electorate. It would be an imperfect solution to a complicated flaw in our imperfect democracy.

Jill Escher is President of National Council on Severe Autism, President of Autism Society San Francisco Bay Area, a housing provider to adults with autism and developmental disabilities, a research philanthropist, and the mother of two children with nonverbal forms of autism.

"Aging Out" Documentary: Filmmaker Giving Parents a Free Preview

My film, Aging Out, recently premiered in my town of Carlsbad, California. This four-year project explores the challenges faced by the families and caregivers of autistic children as they reach adulthood and lose supports, services, and community. I told the story of how, as a 20 year-old communication student as UCSD, I saw a film called Roger and Me, produced and directed by Michael Moore. The film is about what happens to his hometown of Detroit in the 1980s as GM closes factories to increase profits. I sat riveted as everything I knew about documentary film was turned upside down. It was personal. It was opinionated. It was dramatic. By the end of the film, I felt compelled to become a documentary filmmaker myself.

It only took me thirty years. It took having a child whose story I had to tell. It took all of the fear, anger, depression, anxiety, hope, and joy that comes with being an autism parent. My son and many other autistic adults will not tell their own stories; will never be able to truly advocate for themselves. Some can and I celebrate that! My calling is to speak for those who can’t. People often ask me what I hope to accomplish with this film. I want the general population to know that a large percentage of autistic adults won’t go to college, won’t major in engineering, won’t get married, won’t have careers. They will have their own successes, like the brave young people in my film. But for them to do that, resources need to be allocated. It’s that simple. If you don’t know the extensive (and expensive) needs our population has, why would you vote for politicians who would fund programs for them? Why would you patronize business with inclusive hiring and training practices? Why would you be extra patient if our sons or daughters are making your coffee or washing your car?

Collins-Porter and family.

Two hundred and fifty people filled the auditorium where I showed my film. About 95% of those were autism families. Most of them had directly supported the production of the film, either financially or by participating. The love and support in the room were palpable. Now it’s time to take the message further. Parents and caregivers of disabled loved ones can stream my film for free. I will speak to your group for free. Email me at collinsporter@gmail.com to get a link and password. Then, let me know about groups of educators, legislators, service providers, or community organizations who should see the film. Let’s spread this message together.

Melissa Collins-Porter is a filmmaker who lives in Southern California.

More on the film:

Film website

San Diego Union Tribune article

When Special Autism Talents Don’t Make You Rich

Autism typically involves serious and permanent disability, not fame and fortune.

We must not allow pipe dreams of “special talents” to blind society to the hard reality of autistic disability, writes the author.

By Rosanna Armendariz

Over the past several years I’ve noticed an increase in Facebook memes, social media posts and other media-driven conversations surrounding “special talents” of autistic people. The emphasis is usually on those who excel in math, science, technology or who possess exceptional artistic talent such as Stephen Wiltshire, a frequently profiled autistic savant known for his ability to draw a landscape from memory after seeing it just once. Social media goes so far as to diagnose as autistic many of history’s great scientists and musicians, such as Albert Einstein and Mozart. There is endless speculation on the spectrum-like qualities of billionaires like Bill Gates and Mark Zuckerberg. In fame and fortune-obsessed American culture, autism is rebranded as a money making superpower.   

I briefly jumped on the superpower bandwagon when my now 11 year-old son was diagnosed with moderate-severe autism at age 2 ½ (a few years later I was diagnosed with Asperger’s Disorder at age 40, a topic I will return to later). You see, my son does have a special talent. I first discovered this a few weeks after his autism diagnosis. Years into reading to him with no response, I was flipping through a colorfully illustrated ABC book when not only did he respond but he said every letter, its phonetic sound, and read the word under each picture. My heart nearly stopped. I googled “Autism early reading” and discovered “hyperlexia” or the precocious ability to read without formal instruction, typically before the age of 5.    

If I were a money-minded person I could have probably made a tidy sum uploading YouTube videos of my autistic toddler reading and typing words on the computer. Instead my focus was on cultivating my child’s “special talent” with the hope that he would someday become independent and accomplished. I eagerly devoured When Babies Read (Jessica Kingsley Publishers 2005), a book by Audra Jensen, a mom who detailed her success story with her son. Like my son, Audra’s boy was an early reader with autism. Audra’s son went on to gifted and honors classes. Excelling academically, a teenager at the time of the book’s publication, he appeared a bit socially awkward but otherwise fit in with his peers. I eagerly implemented many of the learning strategies included.   

Nevertheless, my son is on a different trajectory. At age 11 he’s plateaued at a third grade reading level with the comprehension of a kindergartner. Math, science, and social studies are around kindergarten level as well. He is able to type sentences on a computer but rather than deep thoughts from the hidden recesses of his brain, he types out line after line from Blue’s Clues and other preschool cartoons that he still watches and enjoys. He speaks mostly in echolalia, repeating lines from TV shows, movies and YouTube videos continuously throughout the day.  He expresses basic wants and needs in simple 3-5 word sentences, but can’t discuss thoughts, feelings, ideas, or have a conversation.  

“My recognition of the limitations of his disability doesn’t mean I love him any less. Rather I’m angry that society has turned its back on people like my son. ”

I’m not angry my son hasn’t turned out like Audra Jenson’s boy. And my recognition of the limitations of his disability doesn’t mean I love him any less. Rather I’m angry that society has turned its back on people like my son. 

I’m angry that autism has been rebranded as a superpower while special education remains grossly underfunded, Medicaid is continually slashed, waitlists for waiver programs are decades long in many states, and residential placements for individuals in crisis are in short supply. I’m angry that according to a 2016 Ruderman Family Foundation report, half of people killed by the police have a disability. Yet we are unlikely to see these incidents blasted across cable news and little has been done to prevent future deaths. Instead we are told to take solace in the success of Dan Akroyd, Susan Boyle, Daryl Hannah and others who use their unique gifts to become rich and famous.  

I think it’s worth mentioning that in addition to my role as an autism parent, I’m also an autistic adult. After a lifetime of struggles with sensory issues, motor issues, gastrointestinal problems, chronic fatigue, an abysmal employment history and serious problems with social interaction I was finally diagnosed with Asperger’s Disorder at age 40. I thought my diagnosis might add credibility to my views on autism-- since I am living it every day. Yet, when I say that autism is a disability and not a gift, “woke” hashtag warriors on social media tell me that I have “internalized ableism.” When I say that although I have an above average IQ and a Master’s degree, I failed the road test to get my driver’s license so many times the staff at the DPS asked me not to come back and I’m unable to drive to this day -- the chorus calls me “negative” and “self-hating.” Online strangers assure me that my son will be an independent adult despite the fact that at age 11 he still needs help bathing, dressing and brushing his teeth.  

Why do “woke” so-called “#actuallyautistic” hashtag warriors whom I’ve never met think they know more about my life than I do? Why do they get to speak for me and my son? Aren’t we “actually autistic” too? And while it may be fun to celebrate the famous actors, artists, scientists and tech wizards we need to get real that they don’t represent the majority of autistics. I can tell you that while my son can read and type on a computer and I am thankful for that, he is unlikely to ever be competitively employed or live independently. 

We must not allow pipe dreams of “special talents” to blind society to the realities of autistic disability. The policies and programs serving many disabled persons depend on this.   

Rosanna Armendariz is a middle-aged Aspie raising a young son with moderate-severe autism in El Paso, Texas. She worries about his future every day.     

NCSA Letter: We must retain non-competitive employment options for Americans with severe disabilities

Like many others, Matt Capps relies on his non-competitive employment program for purpose, community, personal support and income. A misguided quest for “civil rights” would effectively bar countless adults with severe cognitive, functional, and behavioral disabilities from the workplace.

Advocates for the severely disabled are encouraged to submit comments re the urgent need to retain non-competitive job options by the December 15, 2019 deadline, to subminimumwages@usccr.gov. NCSA sent the following letter in advance of the United States Commission on Civil Rights November 15, 2019 briefing. See the Commission’s announcement here.

————-

National Council on Severe Autism
PO Box 26853
San Jose, CA 95159
info@ncsautism.org
ncsautism.org

November 14, 2019 

United States Commission on Civil Rights
Via email: subminimumwages@usccr.gov

Re: November 15, 2019 briefing—the urgent matter of retaining non-competitive employment options for Americans with severe cognitive, functional and behavioral disabilities

Dear Commission on Civil Rights,

To retain and expand opportunities for America's rapidly growing population of adults with intellectual disabilities (ID), including severe autism and ID, it is imperative not only to retain the FLSA 14(c) option, but to expand it to ensure that Americans of all cognitive and functional capacities have the opportunity to engage in meaningful work.

We fully understand and appreciate that some individuals with disabilities have been paid less than their productivity warrants—clearly, justice requires that those individuals receive competitive wages. However, a substantial portion of the disability sector—namely, those with substantial cognitive and behavioral impairments who lack the ability to engage in work at a competitive level—require noncompetitive, highly supported options.

In no way does Section 14(c) violate the civil rights of people with more severe forms of intellectual disabilities. In fact, it does the opposite: it advances their rights adn well-being by allowing them programs and opportunities to work that would otherwise be denied them due to their low productivity and often expansive needs for supports and accommodations; it offers them a workplace with the supports they need, along with protection from termination.

All Americans should have access to work, but elimination of 14(c) de facto excludes our severe ID population from the workforce based on the fantasy that all intellectually disabled adults could achieve competitive employment. A few more key points:

• Given the staggering increase in the population with severe autism, we see a clear imperative to create vastly more, not fewer, options for day programming and supported forms of employment. In California, the population of adults with developmental disability type of autism will grow nearly five-fold over the next 20 years. Only a small portion of these adults can achieve competitive employment. The rest? We need to maximize their person-centered options, including work that pays special wages based on less-than-competitive productivity.

• Subminimum wage work is but one benefit accruing to the significantly disabled clients. Work programs serving adults with significant intellectual disabilities are typically run by mission-driven, not profit-driven, nonprofit organizations. These adults are typically also beneficiaries of supervision, therapeutic care, training, and social and recreational programs funded and provided by the nonprofits. It can be very costly to serve these disabled individuals: they often require high staff ratios, intensive supervision, crisis intervention and ongoing coaching. A standard job supervisor is unlikely to treat seizures, change diapers, or handle getting punched or scratched, to put it mildly. The extremely valuable, though non-monetary, therapeutic dimensions should be considered before over-simplistically labeling subminimum wages as discriminatory.

• 14(c) programs serving the significantly intellectually disabled provide a protected form of employment unavailable in the free market. “It’s not an employer-employee relationship,” explains Tracey Brown-May, Director of Advocacy, Board, and Government Relations at Opportunity Village in Las Vegas. “People employed here who are earning 14(c) wages are not at risk of being fired.” In other words, the employee’s needs comes first, and profitability is not the prime endpoint. The nonprofit work is typically tailored to the particular skillset of the worker, a customization unavailable in the free labor market where individuals are expected to conform to pre-established performance standards. Disability advocates often accuse 14(c) wage programs of exploiting or abusing their disabled workers, but for severely challenged adults, the opposite is almost always true— the programs often protect clients from exploitation and abuse by offering protected employment.

• No person with a disability is forced into 14(c) work, and wages are set carefully. The provision authorizes employers to pay specially tailored wages to employees with disabilities only when the employer can demonstrate, through an exacting certification process, that the worker’s productivity is compromised by the disability. The certification requires a careful calculation of fair wages based on productivity and continuous re-evaluation of the employee’s capacities to ensure wages keep pace with skills. And of course the worker would also need to agree to the wage. Programs must be re-certified every two years by the Department of Labor, which has the duty to identify and remedy any abuse or exploitation it finds during its reviews.

• Most workers with disabilities, for example physical disabilities, are already in the competitive market. Retaining a 14(c) option does nothing to negate or undermine expansion of competitive employment for those capable of that option. Both work options can and should peacefully coexist to serve a dramatically diverse disability population. As Harris Capps, the father Matthew, who loves his job in a Ohio work center, states, "If a higher functioning individual is able to get a job providing a mandated minimum wage, surely, they already have the minimum wage law in effect to protect them."

• When non-competitive workshops close, participants often end up idle at home, lonely and unemployed, or if they work at all, with decreased job hours and decreased total wages. Where is the data suggesting better outcomes for the severely disabled who are denied the opportunity to work? We have seen none. Slashing their jobs, leaving them to languish at home, detached from any community of peers, with no viable alternative discriminates against our most vulnerable. The ostensible “liberation” of requiring competitive employment obviously strands our most vulnerable citizens. At a minimum, 14(c) must remain intact for our subset who lack capacity for competitive employment.

Finally, as representatives of a popuation that would be most harmed by elimination of noncompetitive jobs and workplaces, and as outspoken proponents of 14(c) options, we were stunned to learn we were not invited to present at this session. It appears this briefing was designed to hear just one side of the story, from the more cognitively capable sector of the disability community. Thank you for your consideration of our comments.

Very truly yours,

Jill Escher
President

cc: Tom Ridge

A Celebrated Brit's Memoir Flings the Doors Wide Open on Life with Severe Autism

Dame Stephanie Shirley fled Nazi horror and pioneered a successful IT business, but her son’s autism was her life’s greatest challenge

By Jill Escher

The cover of “Let It Go,” a newly updated memoir by the UK’s Dame Stephanie Shirley, pictures the author, regal and poised, in a 3/4 profile highlighting her intelligent expression and neat attire.

Now in her mid-80s, such a portrait of calm reflection would hardly have been possible decades earlier. Her only child, Giles, who had autism, had become “a wild and unmanageable toddler who screamed all the time and appeared not to understand (or even to wish to understand) anything that was said to him.” His incessant bouncing destroyed beds, while his ripping shredded “books, newspapers, money, vital correspondence,” into tiny strips. 

As an older child, his outbursts and violent tantrums helped push his agonized mother, for a time, over the brink of sanity. “We had bolts on all the windows and locks on all the cupboards (although most things we possessed were broken anyway). We lived in a perpetual state of high alert.” Overwhelmed by stresses at work and a home, her mind darkened with a sense of the walls of rooms closing in on her, and a full-blown nervous breakdown loomed ahead.

Now, I cannot claim anything in common with luminaries like Dame Judi Dench, Sir Paul McCartney, Sir Elton John or Dame JK Rowling. But Stephanie Shirley is one illustrious British Dame whose tumultous story makes her completely relatable, seeming almost like kin, despite her immense accomplishments and elevated status. If you, fellow Americans, have not heard of her, she is revered as an information technology pioneer, plucky and perservering businesswoman, and autism philanthropist. Allow me to thumbnail her remarkable story, then focus on the autism.

She was born Vera Buchthal, the daughter of a Jewish high-court judge and his Austrian wife, in Germany in 1933. At the age of five, as Nazi barbarism descended on the continent, Vera and her older sister were among the last of the Jewish child refugees placed by their distraught and desperate parents on the Kindertransport to the UK. Vera grew up with foster parents, “a middle-aged, conventional couple” she grew to adore, learned to speak English, and proved to be an excellent student with a sharp mind for math, outpacing even the nuns at her convent school in Sutton Coldfield, outside of Birmingham.

This was a time when girls were not expected to study math, so in what would be the equivalent of high school here in the states, Vera found herself shuttling between her girls’ school and a boys’ school, “the only young woman among hundreds of drooling young men.” It would not be the last time her sheer determination shattered gender barriers.

LET IT GO: My Extraordinary Story, From Refugee to Entrepreneur to Philanthropist. Dame Stephanie Shirley. Penguin Random House UK $19.95

In 1951, Vera and her mother, who had also escaped to England, became British citizens. Deeply bonded to her adopted country, she felt immense gratitude for its people, freedoms, customs and intellectual riches that allowed her not only to survive the war, but also cultivate her talents. In “committing [her]self to the country,” Vera took on her middle name, Stephanie, as her first name, and replaced her German-sounding surname with Brook, after the English poet Rupert Brooke. “I felt that I was also committing myself to repaying all the generosity that the English people had shown me: to living a life that was worthy of their kindness.”

Stephanie found work in Britain’s budding technology sector. Disciplined, detail-oriented and industrious, she proved capable of tackling complicated projects that customized computer operations for a particular purpose, the forerunner to today’s software programming. After marrying her huband, physicist Derek Shirley, she decided at age 29 to start her own company selling software, at a time when no one sold software and she had no experience running a business. Businesses that bought a computer did not wish to “pay for the code to make it do what it was supposed to do,” at that time, huge reels of punched tape. She would hire other programmers — by and large, smart and skilled women who appreciated the flexible hours — on a freelance basis as needed, and thus her company, Freelance Programmers, was born. This was followed by another momentous birth: of her son Giles, in 1963.

Now, since most people reading this review care more about the Giles story than the business story, I will omit the details of her career trajectory except to say that over the decades (and bearing the business name of “Steve,” a male moniker that brought in more contracts) Dame Stephanie built a remarkably successful information technology business that made her and a great many of her (mostly female) employees wealthy beyond their wildest dreams. But true to the book’s title, it was a wealth that she, in large part, ultimately “let go,” due at least in part to her experience with autism. 

As with all other parts of the book, Dame Stephanie’s account of Giles’s life is searingly honest, blunt and unsentimental. Her prodigious memory allows her to share details of physical and emotional turmoil, and the costs to her wallet and relationships. Parents of children with severe autism will feel as if they entered a parallel universe reading her words, recognizing her daily hardships and emotional agonies, for example:

“We had long since given up any pretence of a normal, happy family life. We snatched food when we could rather than sitting down together for meals. Derek and I resorted to sleeping in shifts. (You can imagine what this did for our relationship.) But what really frightened me was how the strain was changing me as a person. Emotions and ideas that I neither recognized nor approved of seemed to pop up in my head without prompting.” And about her relationship, “I cannot deny that, at times, our marriage seemed near to collapsing under the strain.”

With Giles in the early 1970s.

After Giles develops epilepsy, the crushing weight of his disability grows heavier. “It is hard to convey to anyone who has not experienced it how harrowing it is to deal with such problems. Your emotional involvement with your child remains as intense as ever — yet you also begin to see him as, in some sense, the enemy. What horror will he come up with next? What disaster will he inflict on you, or himself, next?”

Now, Dame Stephanie never says such things out of disdain for her beloved son, to whom she was clearly profoundly devoted. Instead, you see her exhaustion and exasperation with his mysterious multi-layered mental disorder that caused so much harm to himself and others. She are her husband are desperate, yet powerless, to help him.

The daily ordeals took a toll on her famously sturdy mind, even to the point of contemplation of a suicide pact to “bring this miserable parody of a life to an end.” While some may judge her, most would not: such desperate thoughts are entirely common in families beseiged by severe autism.

Finally, in 1976, she broke, not just from Giles’s situation, but from work, lack of sleep, and other stresses. She writes, in her typical elegant prose: “All those years of fighting, all those years of accumulated emotional scar tissue, seemed to fragment and fall away from me, leaving me as vulnerable and helpless as the five-year-old child I had been the last time my life had changed irrevocably at the railway station [for the Kindertransport], 37 years earlier.”

After months of hospitalization and recovery from her breakdown, Dame Stephanie adopted a sort of “oxygen mask” principle, knowing her welfare must come first, if she was to retain any meaningful capacity to care for her son. For better or worse, they turned to an institutional placement for him. “We had done all we could for him, and all we could do had turned out to be . . . nothing,” she laments in a refrain many parents like her could sing.

Leaving Giles at an institution “was, literally, a question of survival,” she says. “If Giles had not been institutionalized then, I would have been.” Borocourt was “a bleak, joyless place” where patients would sometimes break windows, eat paint, chew clothes, urinate in the wrong place, expose themselves, and lash out a fellow patients. “Put all these challenging behaviour traits in one place… and you get something pretty hellish.”

With money left by her mother, Dame Stephanie eventually purchased a cottage for Giles, a weekend home base for him near the hospital. After she realized she could extract some cash from her share in her company, then called F International, she sold 13% to outside investors, giving her the ability to move Giles to the cottage with a full-time caregiver. Though this plan was met with overwhelming professional disapproval, “Things could hardly be any worse for Giles than they were already.”

The purchase of a larger and more modern house, The Cuddy, followed. After they customized it specifically for his needs, “there was scarcely a breakable thing in the house.” Despite the change of scene, violent outbursts — head butting, hitting, shouting, throwing, exposing himself — continued, but fortunately began to decrease. Indeed, after a while he began to pick up single-word language and the ability to engage in some community activities.

Dame Shirley’s business acumen and inventiveness pushed her to think more strategically. Wanting a sustainable business model and the ability to benefit others like Giles, she made The Cuddy a charity, financed by relevant authorities and a charitable trust she set up around 1993. She could then “pay for The Cuddy out of gross rather than net income, and the whole project would become significantly more sustainable—while the extra resident or residents might see their quality of life improve dramatically.”

Dame Stephanie at Prior’s Court School, a residential school she founded that serves children with more severe forms of autism.

At the starting line of what would become her great passion, philanthropy, she endowed her trust with cash and F International shares, hoping that when sold they would be worth considerably more. As her wealth grew she was able to expand, acquiring other properties for this supported living model. It worked, becoming a “solid, well run enterprise that was changing several lives for the better.”

Later, inspired by Andrew Carnegie’s dictum, “The man who dies rich dies disgraced,” she began to give away more of her fortune, primarily through the establishment of The Shirley Foundation. Among her crowing achievements were the creation of Prior’s Court School, which serves children with more severe forms of autism, and Autistica, a research, support and advocacy charity.

After a seizure in his sleep, Giles passed away at age 35, causing in his mother “the inner howl of despair that reverberates through the rest of your life; the ache that bites and gnaws and never heals.” Perhaps this is a passage only fellow autism parents can feel in their bones, in that despite the upheavals of autism, the connection to our children can run unfathomably deep. “It was like a light going out. Nothing I can write can begin to convey the desolation. The beloved, mysterious, tormented, beautiful being who had been at the centre of my life for 35 years was suddenly and irrevocably absent.”

Yet when past her grief she acknowledged a concurrent relief: “Derek and I had… spent most of our son’s life wondering with dread who he would fare if we died before him. Now we could set our minds to rest on that score.”

In her later years, and continuing today, Dame Shirley championed the role of philanthropy to find answers and solutions to societal challenges. While she never quite attained her goal “to determine the causes of autism by 2014,” she contributed to advances in genomics, sibling risk, neuroimaging, and brain research. She helped build schools and services. And today she aches as she sees the bottomless need for solutions for the massive burden of autism. “Leaving aside the financial implications — and the annual cost of autism to the UK economy has been estimated £32bn - I believe that it is simply wrong to give up in the face of human misery on such a scale.”

Now, it’s hard to square hundreds of Dame Shirley’s language choices (“The catastrophe [of Giles’s autism] had crept up on us…,” “My grand battle has been with autism…,” etc) with the recent Autistica Media Communications Guide that tells journalists to talk “positively” about autism and shun words like “disorder,” but I’ll let that pass; such trendy foibles of the nonprofit she founded hardly detract from my immense admiration for her and her world-changing accomplishments.

Dame Stephanie and Jill Escher in London, August 2019.

By any measure, Dame Shirley’s has been “a life worth saving”—indeed, she has repaid any karmic debt countless times over— and judging by a recent visit (I had the honor of meeting this extraordinary woman in person in London a few months back) her clear-eyed vibrancy and keen wit suggest she has many years of good works left in her.

Learn more about Dame Stephanie Shirley

Her book: on Amazon
Her website: steveshirley.com
Autistica: autistica.org.uk
Prior’s Court School: priorscourt.org.uk
TED talk: here

Jill Escher is president of National Council on Severe Autism, an autism research philanthropist, housing provider to adults with autism, president of Autism Society San Francisco Bay Area, and mother of two children with nonverbal forms of autism.

In Dental Care for Severe Autism, a Papoose Board Comes to the Rescue

Our son Joshua has always had a beautiful smile! It was so heartbreaking when the aggression and self injurious behaviors increased to the point that major damage was done to his teeth. Most families that have children with intellectual/developmental disabilities, especially autism, know that dental treatment can be a challenge even under the best of circumstances. Before Josh went to inpatient treatment in 2018, We sought a dentist for months and only found long waiting lists and rejection for treatment. Now, we have found a great solution involving an alternative to general anesthesia, which is dangerous for Joshua, that we wanted to share with you. —Vance Goforth

The papoose board features a tight velcro wrap, and fits on a standard dental chair.

The following was written by Nellie Gannon, DMD, Director of Dental Services, Orange Grove Center Dental Clinic, Tennessee.

Joshua first came to Orange Grove Center Dental Clinic about 3 weeks ago. His parents were concerned that one of his front teeth were bothering him as he kept pointing to them, but he had never been seen in a dental clinic without general anesthesia. At Orange Grove, our goal is to avoid general anesthesia as much as possible. Especially with individuals with special needs, it can have many risks. Although we know that sometimes that is the only option we have, we utilize many methods to avoid this. One of them is desensitization, which is a way for patients to get slowly more used to the dental office through sometimes multiple visits. We also use the “tell-show-do” method, which helps our individuals understand what we are doing and engage them more in the process. These techniques allow them to gradually learn that we are there to help them and work with them and feel safe.

When necessary, we use the papoose board. The papoose is a means to protect the patient and providers from potentially harmful movement. If a patient is attempting to grab instruments, it could be dangerous to the patient and the people around them. The papoose serves as a means to safely stabilize an individual that may attempt to move during dental treatment in a way that is unsafe, while allowing them to be seen awake without the health risks general anesthesia can have.

Joshua first came into the dental clinic with no issue. As we were told he never had been seen at the dentist while he was awake, we opted to use the papoose with the consent of his parents. We look at each patient and each appointment to determine whether or not protective stabilization, such as the papoose, is needed in order to allow for the least restrictive means possible. We learned that Joshua enjoys Christian music, and had it playing as he walked in to make sure he was somewhere he felt comfortable and welcome. He walked around our clinic, which includes a Jukebox, a PacMan machine, and TVs above the operatories where patients can watch whatever they want. He got into the papoose with the help of myself, my assistant, and Joshua’s caregiver. He was resistant at first but seemed comfortable once he was laying down and secure.

After he was in the papoose we did his comprehensive exam, which includes looking at his teeth and taking x-rays. He would move his head at times when we touched areas that were sensitive, but we were able to complete the full exam and determine the next steps. With the need for extensive dental work, we decided to continue using the papoose for appointments for the time being. He left his first dental appointment he was awake for alert and happy, especially after he got a prize at the end. His mother told us how shocked and happy she was we got everything done, and we were all very thankful that we were able to complete his first visit successfully.

I have seen Joshua three times so far. Since his first visit, we have been able to complete an extraction, a large filling, and deep cleanings throughout his mouth. He comes in and we have the Christian music ready, the TV on, and a prize waiting for him when he is done. Each visit his behavior has improved, as his oral health improves and his teeth and gums feel better. He has so far come into the clinic and left with no issues. We still have extensive work to complete, but my hope is to finish all his dental work in a timely manner and to continue to see him get more acclimated to the dentist. Each visit he seems more comfortable is a success for all of us.

At Orange Grove, there is an approval process to allow for the use of the papoose. I first got some articles regarding its safety and effectiveness in dental treatment, and safety compared to general anesthesia. This went through a Human Rights Committee with the help of our director, where we explained why, when and how we would use it. We made sure to let everyone know it is not used as a way to make an appointment easier, but a way to make our patients safer. After this was approved by the Committee, the dental staff watched videos and modules to learn how to use it. I trained them on my own, as well as with our behavior analyst. Each of us got into it to see what it was like, and to understand how to place a patient in it in a comfortable way. We have consent paperwork that allows a patient’s conservator the option to learn about it and allow the use of protective stabilization or not, and they have the option to revoke this consent at any time. When caregivers are present during appointments while it is used, we make sure to educate them about why we use it at the office.

“Right now, the papoose is the least restrictive means to see Joshua safely.”

Our goal for Joshua and all our patients is for them to be seen in the most comfortable and least restrictive environment as possible. Right now, the papoose is the least restrictive means to see Joshua safely. We will continue to observe each visit to determine if at some point we may not need it. For some patients, they choose to be seen with it, as it works similar to a weighted blanket. It can provide for sensory needs and can also serve as a sense of security. If that is what the patient wants, that’s what we do.

The dentist can be a scary place, and we want to serve our patients as best as we possibly can. I am so happy and thankful that we are able to see Joshua in a safe, enjoyable dental setting where he and his parents feel that dental needs are getting met.

[Further from Vance]

We’re so grateful for Orange Grove and for providing a safe and effective way for Josh to have dental procedures done; but most of all, for working so hard to gain his trust! It’s time that we move beyond the traditional “shoebox” approach to services, treatments and research for severe autism. We need to realize that what may seem restrictive to one individual may be the least restrictive and comforting to someone else. The use of the papoose has been a wonderful solution for Joshua that provided a much better experience and outcome versus Joshua having general anesthesia, which triggers behavioral outbursts during recovery.

If we truly believe the statement “If you've met one individual with autism, you've met one individual with autism,” then we must realize and work toward solutions that are also focused on the individual, especially for those with severe autism. If we don’t, then this statement becomes nothing more than another cliché.

Vance Goforth is an autism dad who lives in Tennessee.

Autism and Guardianship: When It’s an Easy Decision

When intellectually disabled adults lack cognitive tools to advance their own best interests, guardianship can provide a fundamental legal safeguard.

For some adults with autism, guardianship may not be appropriate. For others, like the author’s son here, it’s a crucial means to protect their best interests.

By Eric Jager

I’m very proud of my son as he turns 18.  He has learned lots of skills which will increase his independence. He’s developing vocational and leisure skills with the help of his ABA therapists. He has shown real progress using his augmentative/alternative communication (AAC) device. He has a great sense of humor and makes his family laugh without uttering a word. However, for my wife and me, there is no realistic alternative to guardianship for our son who will be dependent on us and others throughout his lifetime.

Some people criticize guardianship for adults with intellectual disabilities as impeding on their rights. But in our case, we see it as the opposite—a crucial vehicle for protecting our son and advancing his best interests. Because in spite of our son’s progress, he remains dependent on us for virtually all aspects of his life including bathing, cooking, selecting appropriate clothing and initiating any kind of monetary transaction. He is not cautious around people he doesn’t know. He has limited communication ability. As he gets older, his lack of self-awareness poses an increased risk to his safety.

While we may hope for the best, it would be naïve to think that things will change significantly and irresponsible not to plan accordingly. 

The author’s son can use AAC to express simple feelings and requests, but not the sort of complex or abstract thoughts fundamental to making important decisions through adulthood.

His biggest challenge is his limited ability to communicate because of his lack of verbal speech and his intellectual disability. The increased prevalence in the use of AAC over the past decade has been a welcome development, but many people, including some autism advocates, overestimate the potential of these tools to enable severely autistic people to communicate effectively.  

For example, giving a dedicated AAC device or iPad to a person who is severely autistic is not the same as giving one to someone who lost speech due to an accident. A person who was capable of understanding and verbally communicating complex thoughts prior to speech loss may be able to do so again, given the right tool. Not so with individuals like my son.  

He first began using AAC about 10 years ago. At that time, my wife and I were getting mixed advice from professionals on the benefits and potential drawbacks of using AAC. At the time, the biggest takeaway I had was that his lack of fine motor skills could make it difficult for him to manipulate the device or app to access the words and expressions he wanted.

Now almost a decade later our son can navigate his way around the TouchChat app and his Nova Chat communication system with ease. I can barely see his fingers move as he asks for ice cream, a bathroom, or a drive to the park or time with Grandma and Grandpa.

Unfortunately, in spite of the great work of his speech/language therapists, he is unable to use his AAC device to express his feelings (beyond being hungry or tired).  Also, it can’t help him understand that Grandpa passed away a month ago. (He still looks for Grandpa when we visit Grandma). There is no communication technology available to teach my son the permanence and ramifications of Grandpa’s death, or other abstract concepts. Similarly, it won’t allow him to make or express decisions about his living situation when my wife and I are no longer around for him.  

He can’t use AAC to tell us to answer a question as basic as “Where does it hurt?”  Not long ago, his case of shingles went misdiagnosed initially, partly because of his inability to tell us the nature of his excruciating pain. His behavior changed dramatically at that time, including multiple occasions when he caused injury to himself and me. Even after the diagnosis, his doctors saw his behavior as an “autistic meltdown” and wanted to prescribe a powerful antipsychotic. His primary care physician suggested that we physically restrain him to prevent injury to himself or others. 

These doctors often appeared more interested in controlling his behavior rather than his pain. My son’s iPad didn’t give him the ability to say “I’m only acting this way because I feel like my skin is on fire! Treat my pain!” My wife and I, however, knowing our son as well as we do, came to realize this very quickly. We, as his caring guardians, insisted on the appropriate treatment plan. We’ll continue to speak for him in this way as long as it is necessary and possible through his adulthood.

I know that there is no “one size fits all” regarding guardianship and the tools that will help our kids, and I don’t judge decisions made by other families. But as we accept the responsibility to support and protect our grown and disabled children, we must realize that guardianship is one pivotal legal tool that can help provide the means for them to remain healthy and reach their full potential.

Eric Jager lives with his wife and son in Somerset, New Jersey. He is a conference director who has produced and hosted events serving the autism community on topics including the transition to adulthood, augmentative and alternative communication (AAC) and employment. Eric sits on the Leadership Council of the NCSA.

Grassroots Autism Advocacy: Brutal, But Worth It

Fighting for those with severe autism is “worth every minute of the time you devote to it.” Take your child to hearings and meetings in your state. It opens eyes and makes a difference.

White Haven in Pennsylvania may be saved from the axe due to grassroots advocacy.

By Anna Noman

Let me tell you first and foremost, disability advocacy work form the parent/caregiver angle can be b.r.u.t.a.l. Very, very brutal. On the flipside, it is also very rewarding and extremely effective. It can be done individually or as a group. It is empowering when you see results, frustrating when you experince setbacks. It is worth every minute of the time you devote to it. 

I’m the mother of an autistic adult son and a fierce grass-roots advocate in my state. People ask, where do you find the time?

I find the time because our children’s lives are at stake.

Have you heard about the advocates and their families who recently spoke up in Pennsylvania and stopped the closure of two residential care centers? Their voices provided powerful testimony to legislators who in turn called for a moratorium on the closures until a complete and thorough assessment could be completed. 

Have you heard about advocates in Ohio? After their disabilty rights organization was trying to force claosure of all residential centers, our advocates and families fought them in court, and won. The right to choose to reside in a residential center (which offered the needed supports) was upheld.  

Have you heard that in 2018 in Washington state, a bill to eliminate 14c certificates (non-competitive employment) statewide made it completely through the House without anyone testifying against it? Then some self-advocates who actually participate in employment under the certificates and their families became aware of what was happening. They gathered together and formed a collective voice. They showed up and testified, they emailed, they called. The bill was partially blocked in the Senate thanks to these efforts.  

“Take your child or adult, even if you know they may be disruptive. Without a doubt, taking our adult children with significant support needs to legislative hearings has had a positive impact.”

So what can I do, you are saying? I am juggling so many balls, one more and I drop them all. Every single one. 

Well, did you know if your local legislator receives around five to eight emails on a particular subject, their ears perk up a little? If that rises to ten or fifteen, they really listen. Phone calls matter too. If you suscribe to groups that put out action alerts, pay attention. If you support what they're supporting, send an email, make a call. Find out who your local legislators are. Find out if they have town halls. Go. Take your child or adult, even if you know they may be disruptive. Without a doubt, taking our adult children with significant support needs to legislative hearings has had a positive impact on our behalf in our state.

Grass-roots advocacy can be messy and chaotic at times. Those who participate are typically volunteers. Consensus amongst a group can be difficult to acheive. More than anything, grass-roots advocacy is effective and crucial in today’s world of disabilty policy, which is unfortunately dominated by ideologues who want to remove options for the severely disabled.

So what stirs my pot, what motivates me to speak up and speak out and get involved as an advocate more than anything? Love. The deep, unabiding, unconditional love I have for my son. The desire to ensure he is provided opportunities of his choosing that enrich and enlarge his life with people he chooses to be with in the places he wants to be. There are a lot more reasons I came up with, but love is what I kept coming back to. 

Anna Noman is the pseudonym of an advocate for severe autism in her state.

Editor’s note: See NCSA’s letter opposing closure of Pennsylvania developmental centers here.

Intimate new documentary quietly prods excruciating questions about the future for adults with severe autism

“The autism portrayed here is serious developmental brain dysfunction, not any trendy sort of diversity.”

By Jill Escher

Brian Cassano has severe autism and has aged out of his residential school placement and into adult services. His devoted big sister Heather, a budding documentary filmmaker, has decided to film Brian over the course of several months to probe, it seems, a number of difficult questions. On the surface you see a handsome young man jumping, flapping and yelping, but can we peer deeper into the complexities in his head and heart? And on a more pragmatic level, given his minimal functional abilities, what will he do in his adult life, to fill his waking hours? Who will care for him, now, and forever? And who will pay this colossal bill, not just for Brian but for the hundreds of thousands like him?

The Limits of My World is a quiet, slow-moving film that never preaches or rubs your face in policy debates. Rather it lets the camera rest on the protagonist and those around him, immersing the viewer in a gritty reality of autism that could not be farther from the fantasy of The Good Doctor. But in the quiet lulls the viewer cannot help but ponder these painful questions.

The story unfolds: despite abundant therapies that started when he was a young child, plus specialized schooling, Brian remains minimally verbal and seriously intellectually and functionally impaired. He has a history of aggression and property destruction that has rendered his aging parents unable to handle him. His mother reads some old emails:

“Brian has spent the week screaming and melting down, culminating in flooding the bathroom tonight during a meltdown, leaking through the ceiling. Two torn shirts and a new hole in the wall, I love Spring Break… He almost drowned Will (his father) in the bathtub, he broke another wall…. We are at the ER at Sinai Hospital, Brian was brought here by the police… Brian just attacked his sister while she was in her room with the door closed. It took both Will and me all of our strength to get him off her and into his room. He is sitting in there banging his head on the wall and screaming. He is not safe in his home, for him or for anyone else.…”

After the besieged family begs for residential placement, Brian left, never to return. His basic needs are now provided by paid caregivers, presumably via a Maryland developmental disabilities program, though the film does not say. 

A monotony seen in Brian’s life is punctuated by gorgeous moments of sheer joy.

At his home, Brian is mostly expressionless and engaged in simple repetitive tasks, like bouncing on a therapy ball or listening to a Mary Poppins tune, typically resisting various soft demands placed on him. But the film also reveals a flipside: Brian has periods of full-smile joy and unexpected engagement while swimming in a pool, taking a bath, sitting in bird-chirpy nature, and, surprisingly, in a 1:1 math lesson that seems to take place at a community college. Brian is also merrily engaged in toying with a video camera with Heather and their mother, and also watching old home movies with Heather. His recollection of vignettes from his childhood reveals a head swirling with memories and emotions. 

However, the victories, while heartwarming, are but fleeting bursts of cheer against a bleak backdrop of overwhelming disability that does not relent. The autism portrayed here is serious developmental brain dysfunction, not any trendy sort of diversity. A home video flashback of a spunky and brainy Heather as a young girl insisting that she roll her mu shu pork all by herself provides a stark contrast to her brother’s heartbreaking cognitive stagnation.

An uplifting standout is a newly assigned daytime caregiver named Randyn. Randyn is the embodiment of caregiver perfection. With a bubbly positive attitude, a big smile, smarts, sense of humor, and gentle, genuine affection for Brian, Randyn is the answer to many an autism parent’s prayers. “How can we reach him?” Randyn wonders, adding optimistically “I have a lot of faith my boy can go far.“ So as you root for brighter days for Brian, you also root for Randyn, desperately wishing him success and fulfillment in a challenging job that has a notoriously high burnout and turnover rate.

As they test out possible day activities, the program manager at a barn wonders about the mystery that is Brian but also, sort of playing the role of the chorus in a Greek drama, “Why all the autism?” The question about the autism explosion — why is it happening, and what will we do with this vast, unprecedented population — hovers around the film, leaving you with a pit in your stomach about these families’ collective futures. Anyone remotely informed about the surging autism numbers knows Brian’s situation is a microcosm of a far grander catastrophe.

The Limits of My World is a project clearly fueled by love and empathy for Brian, but face it, sister-filmmaker Heather is also something of a protagonist here. Given that her parents cannot care for Brian, will she be next in line to take over? It does appear that she would prefer a career in filmmaking to full-time caregiving, but her independence may hinge on the taxpayers' continuing willingness to provide for Brian’s multifaceted care, which judging by the film includes housing, day staff, night staff, community day programs and supervisory personnel. Given that lifespan costs for autism like Brian's can easily reach $10 million (not addressed in the film, but I've seen what supported living can cost over time), this is the $64 billion question for autism families everywhere.

The autism community should be grateful for this film for revealing an important slice of disability in America that few have the opportunity to see up close. Brian and his family’s lives, like all those in the upswell of autism, warrant close consideration and society’s deepest concern and strongest support.

• Watch the film trailer here
• See full list of places to watch the film here
• Rent or purchase on Amazon Prime Video
• Purchase DVD through the website or Best Buy
• Rent the film to watch online through several platforms including Youtube and Google Play
• The film is not yet available through streaming services, but will probably be released there in several months

Jill Escher is president of the National Council on Severe Autism, president of Autism Society San Francisco Bay Area, founder of Escher Fund for Autism, and a housing provider to adults with autism and developmental disabilities.

The Rebranding of Autism

“The drowning out of autism reality under a sea of euphemisms obscures my son’s needs”

An autism nonprofit in the UK asks journalists to blot out an an entire glossary reflecting realities of severe autism. (Stock photo)

By Jane McCready

A prominent autism research nonprofit in the UK has issued a “Media Communications Guide” asking journalists and content developers to use what it calls “the right language” in stories about autism. Terms associated with severe autism or hardship are to be avoided. Autism is no longer a “disorder” but instead a “condition,” or maybe at a pinch, a “disability.” Reporters are asked to avoid phrases like “low functioning,” “non-verbal,” or “severe.” Any negative language like “suffering from” is to be shunned.

Such language policing erases half of the autism picture. And it’s the half with my son in it. He’s 16 like Greta Thunberg, the autistic climate activist, but there the similarities end. Language that applies to Greta surely does not apply to him.

Around 30-50 percent on the autism spectrum have a learning disability (called an intellectual disability in the US), an IQ measuring below 70. Some 25-30% of autistic people will remain non or minimally verbal. Around a third to a half of autistic people will be self-injurious or aggressive. Autistica, the very charity which writes this style guide, tells us in another document that “autistic adults with a learning disability are 40 times more likely to die prematurely.” (1,2,3,4,5) 

It’s not just about the co-occurring conditions. Autism traits themselves range from moderate to severe, as per the DSM-5 chart (6). Autistic people at Level 3 will require “very substantial support.” They have a disorder, their conditions are severe. This is not a value judgment, of course. It is to say nothing of how deeply they are loved, nor is it in the year 2019 any indication of “shame,” as in the bad old days of attitudes to disability and children hidden away in institutions. But it is a measurable, objective reality. Does whitewashing autism’s language force our children into a new sort of hiding, lest they tarnish the modern autism “brand”?

The Media Guide also defies logic. To actually get a diagnosis of autism you need to demonstrate not ‘superpowers’ but clinical impairments in key areas of functioning, eg communication, social interactions and restricted/repetitive behaviours. There is nothing in the actual definition — whether in the ICD-11 here in the UK, or the DSM-5 in the US — of autism about strengths. While all people with autism surely have some strengths, this is not what qualifies them for a diagnosis of autism.

To be diagnosed autistic under ICD-11 you need to have shown: “deficits … sufficiently severe to cause impairment in personal, family, social, educational, occupational or other important areas of functioning … usually a pervasive feature of the individual’s functioning observable in all settings.”

What’s needed for an actual autism diagnosis (in our case, a 30-page diagnostic report filled with supposedly offending terms) is what the Media Guide would like to throw away. The Orwellian doublespeak of it makes the head spin.

So what is a poor reporter to do? Between Thunberg giving world-changing speeches at the UN, and my son who is still working on phrases like “go outside play”? (And that phase, by the way, is a huge triumph for him — his UN moment— given his starting point.) What versions of autism are they allowed to share? Clearly, not my son’s.

Clarity matters. My son will need 24/7 care for life, and is not safe to cross a road or be left alone for even five minutes. He has strengths, yes, including a capacity for pure joy which lights up the faces of all around him. But he will never live independently, or have a job, or marry or do so many of the things we all take for granted for our children. It does him no favours — overshadows his profound needs — to “concentrate on his strengths.” Actually it does no favours to the very real needs of all on the spectrum to language-police autism. I don’t downplay the host of problems faced by higher cognitively functioning autists, and others should not downplay my son’s.

The drowning out of autism reality under a sea of euphemisms obscures my son’s needs. It obscures the needs of autistic folk who are severe (not allowed to say that), the ones who are low functioning (not allowed to say that), the ones whose families are financially and emotionally devastated (not allowed to say that), and a society facing serious social support demands from a growing population of severely autistic (not allowed to say that) adults. And out of sight, out of mind has devastating real-world consequences for those at the severe end of the spectrum. As has been shown by the uncovering of serial abuses in residential ‘care’ homes for autistic adults here in the UK.

The style guide authors at Autistica no doubt meant well, wanting to remove what they see as negativity from autism discourse. But the real “right language” to use about autism is the truth about what their difficulties are, and therefore what services society needs to step up and provide. 

Notes: 

(1) Learning/intellectual disability
An estimated 50 % of autistic people also have a learning/intellectual disability according to UK and World Health Organisation figures. US figures now put this closer to 30%. 
https://www.autism.org.uk/about/what-is/myths-facts-stats.aspx
https://www.who.int/features/qa/85/en/
https://www.autismspeaks.org/autism-facts-and-figures

(2) Non or minimally verbal
People with ASD commonly also have language difficulties, and around 25% to 30% of children are unable to use verbal language to communicate or are minimally verbal (use fewer than 30 words).
https://www.cochrane.org/CD012324/BEHAV_are-communication-interventions-effective-minimally-verbal-children-autism-spectrum-disorder

(3) Self injury
Self-injurious behaviors (SIB) have been reported in more than 30 % of children with an autism spectrum disorder (ASD)
https://www.ncbi.nlm.nih.gov/m/pubmed/27565654/

(4) Aggression
Aggression is a particularly impactful and limiting co-occurring behaviour. Reported prevalences of aggression in ASD are 35–50% (Kanne and Mazurek 2011; Mazurek et al. 2013). 
https://link.springer.com/article/10.1007/s10803-019-04129-3?utm_source=Copy+of+Spectrum+News+%28Daily+Report%29&utm_campaign=92510b6953-EMAIL_CAMPAIGN_2019_07_19_03_55&utm_medium=email&utm_term=0_5d6f652fd5-92510b6953-168433881

(5) Mortality
Autistic adults with a learning disability are 40 times more likely to die prematurely due to a neurological condition, with epilepsy the leading cause of death. Autistic adults without a learning disability are 9 times more likely to due from suicide.
https://www.autistica.org.uk/downloads/files/Personal-tragedies-public-crisis-ONLINE.pdf

(6) Severity levels in autism: levels 1-3, DSM-5
https://www.autismspeaks.org/autism-diagnosis-criteria-dsm5

The author with her son Johnny, who is 16, severely autistic, brings pure joy to all who meet him, and will require 24/7/365 care for life.

Jane McCready is a mum and stepmum of four, including a severely autistic son and a high functioning stepdaughter. She lives in London, UK with her husband and two of the children. Jane runs the ABA Access4All campaign and sits on the Leadership Council of the NCSA.