The Silencing of Severe Autism Across the Pond

The UK's embrace of a celebratory stance on autism obscures autism’s harsh realities and invites de-funding, writes Jane McCready.

 
The author with her husband and son on a trip to historic Bath, England.

The author with her husband and son on a trip to historic Bath, England.

 

By Jane McCready

I have grown increasingly alarmed by the silencing of the severe autism voice over here in the UK.

Around half on the autism spectrum also have a learning disability (you call it an intellectual disability in the US). Very often they will also have the type of autism that requires 24/7/365 support, like my son. Yet you’d not know it from the depiction of autism in the UK media, in research, online and via our UK autism charities. 

I was leafing through the magazine sent out by our national autism charity. I realised that of the 6 major articles, 5 were about autism at what you’d call Level 1 (we don’t really use those terms much here, but I am no longer allowed to say high functioning). So, the tennis ace or the autistic person now writing for TV comedies. The only story about severe autism in the whole magazine concerned a child who tragically died, due to pica. But generally you would come away with the idea that autism is really quite good news, so no wonder governments don’t feel the need to prioritise it.

The UK is the original home of the idea of the “social model of disability”, whereby my boy is not disabled (entirely) by the autism but by a society that doesn’t accommodate his autism. It’s why we don’t use medical model language like “treatment” for autism over here.

But to be honest the social model works better for physical than developmental disabilities. There is no equivalent of the ramp that will render the world safe for our children to venture out into alone.

And there’s another problem that militates against my son’s needs. 

The mere fact of being diagnosed autistic does not confer spokesman rights for the whole spectrum. Yet increasingly a select few autistic folk are being cited as “the autistic voice”.

It has become de rigeur over here to have an autistic person or “ambassador” on the board or committees of our autism charities and parliamentary bodies. But what that generally means is a verbal autistic person - who can take the Tube to the meeting, who has an email address to receive the papers, who can talk and make logical points.

And, still more harmful, some of the more militant crowd will argue that parents’ voices “don’t count” as they are not actually autistic themselves.

At which point my boy’s voice is twice lost: once because he is severely autistic, and twice because I am disallowed from speaking for him, pushed off the platform.

“My boy’s voice is twice lost: once because he is severely autistic, and twice because I am disallowed from speaking for him.”

At this point, I am actually angry. I know from my own family how different the two “ends” of the spectrum really are.

My wonderful boy, 16, has severe autism and a severe learning disability – his IQ was recently reassessed at about 45. He is doing so well at his outstanding ABA school, but the severity of his disabilities (he has medical issues on top) means he will never be safe to set one foot outside the house alone and has only basic speech/understanding. ABA has helped us with many of his more challenging behaviours, but it’s an ongoing journey (and we are slap bang in the middle of the teen years!).

I am also stepmum to a beautiful, higher cognitively functioning stepdaughter, age 22: she’s a politics graduate, has a brilliant career, a partner, an independent life - they’re about to buy a house together.

Very different autisms.

A study from the University of Exeter looked at all autism research carried out in 2016. A whopping 94% of it was done with autistic folk with no learning disability. So even though they make up half the spectrum, autistic people like my son are pretty much invisible in research. And not just in the UK but the world over. 

What we’ve thought of as autism research has in fact been “demi autism” research. An erasure of severe autism. And what gets researched, gets done – so the lack of research focus on severe autism has real policy, funding and societal consequences.

“Being dishonest about the very real challenges autism brings does no-one any favours except cost-cutting funders.”

It’s as if a decision has been taken somewhere that we need to celebrate the good parts of autism, and it’s somewhat rude to focus on any difficulties. There’s even a heated and fairly ludicrous debate over here about whether it’s actually a disability or disorder – though not, I’ll warrant, when it comes to collecting disability benefits.

Being dishonest about the very real challenges autism brings - at both ends of the spectrum and at all points in between - does no-one any favours except cost-cutting funders. It dishonours our children’s reality, hides their struggles.  

Like most of us parents, I spend a lot of time planning for my own and my husband’s deaths.

“Not sure anyone other than severe autism/disability parents can understand that race to sort things out before we die.”

Not sure anyone other than severe autism/disability parents can understand that race to sort things out before we die. Dying with a severely autistic son feels a bit like leaving a 2 year-old standing alone in the middle of a busy motorway. Helpless and vulnerable out in the world. Plans have to be made, siblings consulted, we have to make watertight wills, have to make sure he learns as many independent skills as possible. Before we become little old people too frail to help him with the skills he hasn’t learned to manage himself. Shaving, showering, cutting his toenails, making food, taking a bus to the supermarket, talking to express his needs. The list is endless. All stuff that the late-diagnosed, level 1 autists who lecture me on Twitter, and take places on autism boards, have picked up easily and take for granted.

But from our government, forward planning for our severely autistic children is absent. To change this we mums (and dads) must speak up and fight against the feel-good mythologies that have taken over autism narratives. 

I was very chuffed to have been appointed to the Leadership Council of the US-based, ground-breaking National Council for Severe Autism. Where our kids are not able to speak up, we parents won’t be silent any more. 

Jane McCready lives in London, England. She is the founder of a UK parent campaign for better state access to ABA services (www.abaa4all.com). You can follow her on Twitter at @ABA4ALL_UK.

Walking on Eggshells, a Severe Autism Perspective

Everyone has used the term, “walking on eggshells.” Looking back, I used it for trivial things. Here is what it means now.

 
 

By Vance Goforth

Everyone has heard and used the term “walk on eggshells.” I think back and chuckle at what I used that term for before dealing with a child having severe aggression and self injurious behaviors.

Don’t get me wrong, I’m not making light of others that use this term but just reflecting on my thoughts and perspectives since facing, quite frankly, living nightmares. I might have used that term for someone having a bad day at work, a spat with his spouse, or even said this after someone’s favorite sports team lost a big game. Looking back, it was used when describing mostly trivial things. Here is what I use the term for now.

To be walking on eggshells now is trying to redirect my son constantly to keep him from even seeing any type of electronic devices; these will trigger an outburst when we take him on a trip away from his residential home.

Walking on eggshells now means second guessing myself ten times before offering Josh candy because if I offer the wrong kind, wrong amount, wrong flavor or if his youngest sister gets a piece before him. Then this leads to a major outburst.

Walking on eggshells now means if I help Josh turn on a tablet, Alexa or other device to play music, I have a 50-50 chance of mentioning the right music. Gospel or Christmas music, if I mention the wrong one, it can be a meltdown.

Walking on eggshells now means having to walk in front of my seven year-old daughter so Josh doesn’t see her and it triggers an outburst. This one is a real blast to have to deal with because it changes from day to day and you can’t gauge when it will start happening. She spent most of the time hiding when he was at home or even hiding behind the van seat if he has an outburst while we are visiting.

Walking on eggshells now means clearing a room and trying to get him away from anything that can be broken the first time you hear thunder. If lightning starts, you’re already too late and the outburst is coming. You spend the next two hours holding him and reassuring him that the storm will not hurt him.

Walking on eggshells now is praying that the music playing inside the store you’re in doesn’t cut off, because he will throw himself down on the floor, and if you’re lucky, you might get him to the car 30 minutes later.

Walking on eggshells now means dreading giving medications. You don’t know if he will just take his medications or if he will start damaging everything around him and trying injure and also self injure.

To be walking on eggshells now means we have to watch our words and statements to the insurance company. One wrong word or statement can be the difference of getting or not getting services. It can also cause the insurance to deny services even when your wife is in tears and begging for help.

Walking on eggshells now means having conversations with legislators and hearing the dreaded words “there is no funding for this” and you feel as if the fact that the pain and suffering your child and family feels is ignored and viewed as not worth it.

This list keeps on going but I’ve learned this, I hate eggshells.

Vance Goforth is the father of a young man with a severe form of autism. He lives with his family in Tennessee. You can find Vance’s autism parent support group, A Voice for Joshua, at facebook.com/pg/changeforjosh

Disclaimer.png

NCSA Letter Opposing Bills that Would Cut Autism Employment

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Non-competitive employment remains a critical option for many adults with severe forms of autism and related disorders. Two federal bills would strip away these opportunities, denying countless disabled adults the dignity of purposeful work.

Click here for the PDF of NCSA’s letter to lawmakers opposing the bills. Please share this letter with your own congressmembers and senators.

‘Denial’: Serving Up Devastating Autism Truth With a Side of Dumdum

A fruitful gutting of epidemic denialism falls victim to the non-sequitur that vaccines cause autism

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Review/Commentary

By Jill Escher

“Denial” is one of the best books on autism I’ve ever read. It’s also one of the worst.

The new-ish (2017) book by Mark Blaxill and the late Dan Olmsted is a two-for-the-price-of-one. The first 141 pages ooze with exasperation as the authors solidly refute the ludicrous denialism of the dramatic surge in autism in recent decades. The remainder of the book, suggesting that money-hungry vaccine programs fuel this increase, well, hot damn, it’s like watching a home-run slugger rounding third then shooting himself in the foot before he can score.

Pardon my head-slap here but why, why, why? Why is “epidemic” enduringly coupled with “vaccines”? Why can’t we simply acknowledge the truth of our autism epidemic while equally acknowledging that we still don’t know the causes, since that combination is—based on overwhelming evidence—the real state of things? But more to the point, why ruin what could have been an important book, with potential social value matching Bernie Rimland’s heroic “Infantile Autism” of 1965 (debunking the Refrigerator Mother hypothesis), with conspiracy theory?

DENIAL
By Dan Olmsted and Mark Blaxill
Skyhorse Publishing, 200 pages, $24.99

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But for now let’s focus on the good. Blaxill and Olmsted wallop what they term the “Denier” narrative that today’s autism rates can be explained by shifting diagnostics and better awareness by fine-tooth combing through historical accounts of disabling mental conditions of early childhood. The trove of detail they convey—from Heller-Weygandt syndrome to childhood schizophrenia to Leo Kanner’s early descriptions of autistic children and more—show that it is not only unlikely that much autism existed before births in the 1930s, but that such existence is virtually impossible

As the authors point out, accepting the “pernicious narrative” that we have an epidemic of awareness, and not a real epidemic of autism, would require us to believe a veritable mountain of absurdities. For example, we would need to believe that 1.5 billion people disabled by autism (and not just the eccentric oddball here and there) through history were overlooked and never described. We would need to believe that in 1943 when Leo Kanner, the leading child psychiatrist of his day and by all accounts a sharply perceptive, experienced, and skilled clinician, described “a number of children whose condition differs so markedly and uniquely from anything reported so far,” that he and his fellow practitioners and researchers were so colossally blind and incompetent they somehow failed to note millions of similar cases. We would need to believe the small Mississippi town of Kanner’s first subject, Donald T., had 60 other autistic residents who escaped absolutely everyones’ attention. We would need to believe that even today hidden hordes of millions of adults disabled by autism, including about half with severe forms of autism, have been systematically overlooked by schools, the military, social services systems, mental institutions and medical practitioners.

Several years ago I read a number of primary and secondary sources describing childhood mental pathologies from the early 20th century, including the heyday of the eugenics movement in the 1930s. Like Blaxill and Olmsted, I struggled in vain to find evidence of anything like my children’s perplexing neurodevelopmental impairments in the literature. Denial goes into much greater depth than I did, but came up with the same conclusion—the plainly disabling autism flooding special ed classrooms today was barely a blip before the 1980s, under any label.

The “Denier” foils that Blaxill and Olmsted choose for this journey into the minutiae of pediatric psychiatric history are authors Steve Silberman, writer of “NeuroTribes,” which preposterously portrays autism as a naturally occurring strange genetic “gift,” and John Donvan and Caren Zucker, authors of “In a Different Key,” which manages to dodge the critical question of increasing rates even as it sets forth a sweeping history of autism.

While I can understand Blaxill and Olmsted’s offense at Silberman’s buffoonish, quasi-religious denialism, and have even blogged my own disgust with his book here, Donvan and Zucker have been mostly mute on this point and their writings have not been strongly associated with denialism. Full disclosure that I am friendly with both Donvan and Zucker, and have expressed to them my sharp disappointment about their book’s vacillation on the autism increase. But I know them to agonize about the mounting adult autism crisis and, unlike Silberman, to lack any inclination to trivialize autism.

But in any case, I felt Denial picked the wrong enemies. In the end, popular nonfiction trade books like NeuroTribes and In a Different Key have little impact on research directions and policy decisions. Rather, it is the scholarly literature—the writings that appear in peer-reviewed scientific journals, the opinions of leading academics—that carry much more weight and have more bearing on legislative suppositions. And on that front denialism is frighteningly rampant (even a sort of insipid fraternity handshake indispensable to a researcher’s in-crowd cred) and many times more dangerous.(fn 1)

Denial touches briefly on a few of these ivory-tower deniers, in particular former DSM leader Allen Frances, who is now little more than a Twitter grump who hyper-simplistically brushes off increases in most mental pathologies, including autism. The book also counters Terry Brugha, lead author of a sloppy epidemiological study that used scant and skewed evidence to assert a 1% prevalence among UK adults. As the authors say, “The flaws with this effort were so numerous it’s hard to know where to begin,” and I invite readers to consult pages 125-26 for details. Also mentioned is Richard Roy Grinker, an anthropologist who blithely attributes the autism explosion to shifting definitions without actually grappling with the data (Silberman luxuriates in the same logic-free mischief). 

An entire book could have been written on career deniers like Eric Fombonne, a psychiatrist and epidemiologist whose contorted analyses dismissing a true increase are the Rube Goldberg crazy contraptions of autism, or Simon Baron-Cohen of Cambridge University, a mega-fan of neurodiversity who recently opened the International Society for Autism Research meeting with a pontification about “respectful language” utterly devoid of any sense of urgency. The book should have also mentioned Spectrum News, published by the influential Simons Foundation, which makes a sport out of epidemic denialism in its gush of breathless stories overhyping puny genetic findings and downplaying the significance of alarming reports of ever-increasing rates. To his great credit, though, in his advocacy career Blaxill has hit back hard against bogus science; see this for example, in which California researchers backtracked on a paper suggesting diagnostic shift from mental retardation could account for the autism upsurge. And added kudos for this, a recent paper demonstrating strong upward trends in autism.

After 20 years of involvement in autism research and advocacy, here is the world as I see it— Blaxill and Olmstead are tragically, heartbreakingly correct. Our communities are hemorrhaging autism. Whereas this striking mental impairment was barely seen in schools, institutions, doctors’ clinics, adult programs, and catalogues of pediatric mental disability through the 1980s (again, under any label, and by all accounts that I have seen and heard), our educational, medical and social services are now awash in cases. In California, our developmental services system counted about 3,000 residents with autism in the early 1980s. That number has surpassed 108,000 today. An increasing prevalence of autism has been noted in all states and across the world, with the vast majority of studies finding that sociological factors like awareness and diagnostic shift could at best provide only a partial explanation. My God, 1 in 34 children in New Jersey (we’re talking 3%!) are now found to have autism, by itself a mind-boggling tragedy of stupendous proportions (and not explained by in-migration) that no credible observer has passed off as an epidemic of awareness. 

Now, many people reading this review are wondering why I dismiss Blaxill and Olmsted’s preferred idea that the biological force behind this tsunami is the U.S. vaccination program. I should first point out that Denial does not really make any serious attempt to prove that vaccines cause autism on a biological level. Rather the authors resort to innuendo and “follow the Big Pharma money” arguments. 

I was not convinced before, and I’m certainly not convinced now. That pharmaceutical companies like profits is not news and is not evidence of causation.(fn 2) There is simply no credible evidence on a molecular, toxicological, neurobiological, or epidemiological basis to tie autism to vaccines. This red herring cannot explain autism’s complex neurobiological underpinnings, its early (fetal period) neurodevelopmental origins, its 4:1 male-to-female sex ratio, the broader autism phenotype in families, its very strong heritability, the repeated epidemiological null findings, or many other phenomena. And of course the pathogen-inviting consequences of non-vaccination can include serious brain injury or death, i.e., the very opposite of protection.

Enough. Done. Kaput. Let’s spend our time, energy and money on concepts that have some hope of explaining this dreadful epidemic, and pull our dumdum selves out of this Dark Age of Autism. To borrow Denial’s own argument, “something new and terrible is happening to a generation of children” and “it’s our moral responsibility to figure that out.” Note to Blaxill, Robert Kennedy, Jr, et al.—this moral responsibility includes… ditching the vaccine hypothesis. Rather, many other biologically promising paths deserve our urgent attention.(fn 3)

In the end, despite the vaccine detour, Blaxill and Olmsted are right to scream to the universe that by this point the denial of the autism epidemic is unconscionable scientific and journalistic misconduct leading to an ”abrogation of our civic responsibilities.” As they say, “we have no experience as a society in which one in 68 [now 1 in 59] children grow into adulthood with autism, we are completely unprepared for what lies ahead: the escalating cost of services, the drain on caregivers, the frailty of elderly parents the ripple effects on siblings and extended family, and the drag on communities in which these exhausted families reside.”

And the costs will be staggering. “The infrastructure to handle this surge in autistic adults—80 percent male, mostly young and physically strong and often violent, and with relatively little capacity for productive work—is nonexistent today,” they write. “Further, the cost to serve this new population is entirely unbudgeted by the state-level disability service organizations that are tasked with providing them, and so will fall in large part to their parents since disability services are not an entitlement and will almost certainly be curtailed as the unbudgeted demand for them rises.”

Bingo. The shameful wave of denialism has facilitated a dithering of monumental proportions and morally repugnant stagnation (even backtracking) on the policy front. In our country’s legislative halls and administrative cubicles one sees little acknowledgment of what has slowly emerged as our country’s most devastating public health crisis. Imagine a scenario where 1 in 59 U.S. children were born without a pinkie, or without an ear. We would see a panicked frenzy from the White House to everyone’s house. But today we face a vastly more dire reality—1 in 59 children with brains that failed to wire up correctly, with most acutely disabled and unable to care for themselves over a lifetime. And what do we get? A nationwide shoulder shrug. Blaxill and Olmsted’s outrage is more than justified.

By the time I reached the end of the book, where the authors describe an autism parent entertaining murder-suicide with their severely autistic daughter after they reach the point of being unable to care for her, I admit I also shrugged. Not because I would condone such a horror, but because I’ve heard the same desperate cry from dozens of other parents who see no realistic care alternatives forthcoming for their beloved and unfathomably vulnerable grown children. Pardon the drama but I must agree with the authors’ suggestion that denialism, and the inaction it invites, will eventually bring death.

Dan Olmsted passed away unexpectedly shortly after the book manuscript was submitted. I mourn this loss even while I lament his role in the anti-vax craze. The autism community lost a journalist who grasped the scope and implications of this epidemic and was unafraid to speak many important truths.

Jill Escher is an autism research philanthropist who serves as president of the National Council on Severe Autism and president of Autism Society San Francisco Bay Area. She is the mother of two children with nonverbal autism.

Footnotes

(1) An insidious willful ignorance pervades the ivory tower, and not just in the research literature. At a dinner earlier this year I sat beside an autism geneticist who insisted there was no true increase in autism, dismissing mounds of data but instead citing the Brugha UK study (which shows no such thing) and the idea that autism used to be called a schizoid disorder (a bold assertion with no data). Last year I had lunch with a well known researcher who remarked that the California developmental services autism caseload had grown more than 30-fold in large part due to parent service-seeking, which is so delusional I almost felt I should have called Adult Protective Services. A few years back I had a meeting with a leading researcher at UCSF. He leaned back in his chair, crossed his arms and said, “I assure you, Jill, there has been no true increase in autism,” and then proceeded to draw me a picture of a house with stick figures on the ground floor, and stick figures in the attic. The ground floor held the identified cases, while the attic held unidentified cases. Voila! Who needs evidence when you can cartoon a fantasy about hidden autistics? And in a phone conversation with one of the top brass at the UC Davis MIND Institute, it was suggested no peer-reviewed literature indicated a true increase in autism (even though UC Davis had, in fact, published such studies). Now, having spilled all this, it seems the real driver of this B.S. is not honest scientific belief, but rather a circle-the-wagons mentality to fend off enduring anti-vaccine sentiment, which is admittedly partially understandable. 

(2) I am not saying that vaccination is always safe for every person in every circumstance: all pharmaceutical products pose some risks to some people (just read the inserts). But what I am saying is that inoculations cannot possibly account for the increase in autism.

(3) One obvious hypothesis is the unforeseen adverse heritable impacts of general anesthesia (basically a tampering of a parent’s early germ cells, not a direct exposure to the the ASD child). I have addressed this topic on this website here and more recently in a letter to the National Institutes of Health here, in the peer-reviewed scientific literature here and here, and at several scientific meetings, most recently here, and as I will do here, here, here and here later this year. But this is hardly the only biologically plausible hypothesis of autism waiting in the wings. Others include heritable impacts of other germline genotoxicants (such as intensive doses of tobacco, synthetic steroids, CNS depressants, and anticonvulsants), adverse perinatal events, prenatal immune dysfunction, and certain forms of assisted reproduction.

Other reviews by Jill Escher

Bryna Siegel Truth-Bombs Autism

The Horrifying History of Hans Asperger

"Immersed" Takes an Unflinching View of Severe Autism

NeuroTribes: One Step Forward, Two Steps Back for Autism



NCSA blogposts represent the opinions and views of the authors, not necessarily of NCSA. Inclusion of information in our blog or social media does not represent an endorsement, and omission does not imply disapproval.



Just Give Me a Day . . .

A mother claims her right to mourn the crushing challenges of autism

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Editor’s note: Tiffany Hammond, who blogs at “Two Dollops of Autism,” is the mother of two sons with autism. On her son Aidan, Tiffany says: He is “non-speaking and engages in self-injurious behaviors so damaging that he has scars that we cannot even begin to know if we can treat or if they’ll ever go away.  We all have scars from his most challenging days. It is not uncommon for Aidan to repeatedly bite himself until he breaks the skin. Or scratch himself until he bleeds.” She describes her son Josiah: “Best friend to his big brother, is incredibly verbal and moderate to mild support. He doesn’t view his autism as a gift, even if I spend too much time trying to convince him otherwise. He feels as he feels, he has a right to those feelings.” 

She describes herself as “that Autism mom who is always laughing. Always smiling. Always happy. I’m always helping others and I always have an answer.” Or at least that’s how it seems on the surface. She and her family live in Texas.

By Tiffany Hammond

Just give me a day…

where I don’t feel bad about hating your cutesy poems about how Autism has made your child unique and special.

A day where I can scream f*ck you to your declarations about how it’s made you a more patient parent, and enhanced your life in every way.

A day to scoff at your “Autism has its challenges, but I wouldn’t change him for the world” memes.

A day so I can feel it’s okay to cry about how hard it is.

A day to think about how Autism makes me feel without any of the “put yourself in their shoes” speeches.

Just give me a day…

to not think about my child’s feelings, what he’s going through. I don’t want to.

I need a day to think about how Autism makes ME feel.

I need a day to acknowledge that I actually have feelings.

I need a day to not concern myself with your claims of selfishness for caring about me.

A day to be upset my child has Autism.

Time to not think poorly of myself for succumbing to your proclamations of disservice to my child for not loving all that he is, as he is.

A day to realize I have a right to my feelings.

A day to rebuke the notion that simply because we all have struggles and challenges that that equates to sameness. It doesn’t.

A day to realize what I already know, but stuff deep down, and that is that there are levels to Autism and that my son has it worse than many, and many have it worse than him. It just is what it is. and that’s ok, but it must be acknowledged. 

A day to speak my truth into existence, if only for a day.

Autism is hard for me.

I’m surrounded by people, yet alone.

I’m filled with emotions I can’t even feel because it’s not considered appropriate to do so.

The pressure of Autism weighs on me constantly, give me a day to let it crush me. I would rather pick up the pieces later, keep what I need, discard what I don’t, than continue to carry a load my spirit is too weak to handle.

Just give me a day…

to feel it all.

To grieve.

To mourn.

I need to feel it all.

I need to cry.

Just give me a day…

to not be strong.

I need a day to hurt.

Autism can hurt. Mentally. Physically. Emotionally. 

Just give me a day…

to say that Autism hurts.

I’ll be better tomorrow.

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XOXO

Tiffy

Iphones and Autism: The Struggle Is Real

 
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By Amber Tucker

Having a child with autism is hard: the everyday struggles with simple tasks that are easy for everyone else; the emotional struggles for the child and parents. The list goes on. But one of the struggles is the high cost of the electronic devices and their “protective” cases. These so-called protective cases vs autism, well obviously the manufacturers need to hire our kids as testers.

My toddler who has the strength of Hulk when upset will tear apart his phone and tablet cases, throw them, step on them and any destructive thing you can think of. We have gone through countless very expensive tablets and phones because we can’t find a case that holds up. Buy an Otterbox ($20-$70), and he rips the rubber casing off in a matter of seconds when he was in meltdown mode. Ok, well at least the hard plastic case is still there. But then the second meltdown happens a few minutes later, and there goes the hard plastic pieces. The case lasted three days. Fine, let’s buy another one. I was not thinking that through. But he destroys the second case the same day he got it. 

Next case up is Lifeproof. I love this case when it comes to my own electronic devices because I’m butterfingers when holding a phone. Now I am sure this one will work, spend $30, two weeks go by and then all hell breaks loose. In one of his ABA sessions, he got a new therapist, and it’s end of the world. Mind you that they didn’t get rid of his other therapist, they literally just introduced this person to him and he loses his mind. 

Phone goes flying, gets kicked around, stepped on, you name it. Phone and case survive. Hallelujah!!! We let everything calm down and I am talking with the therapists about making a goal for him about this issue. While doing this he is trying to calm down from crying and he has his phone… picking at it. He picks the volume buttons and charge port areas. He then proceeds to get enough leverage on it to rip it apart. And there goes another case.

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Next up, military heavy duty!!! Yes, this has to work. It’s waterproof, shockproof, and metal and has gorilla glass. The front and back parts screw together. Perfect!! Toddler will not be able to rip it apart. It only cost $12… wait $12 now I have my doubts. This case is heavy. Everyone at his ABA center learns how to duck and cover, this thing is a brick. Toddler has one of his most explosive meltdowns that I have ever seen and the phone survives. This case seriously survives for a month and a half … that’s right a full month and a half!!! 

What causes the downfall the case.... well I don’t know. I went to pick him up one day from ABA and I look at his phone and the glass is shattered. No one knows what happened because he had no meltdowns. From the looks of it, it’s a pressure crack. At the time he was carrying the phone on a lanyard and must have leaned against something that hit the case just right. Not mad at all, for $12 this is one of the best cases. So I order another one. Send the kid off to ABA and at the end of the day pick him up. What in the all holy figures happened!! It’s smashed!! Come to find out he threw it at one of the therapists and it hit the wall and shattered. But good news, even though I went through two cases, the screen on the phone itself was safe and sound. 

By the end of two months I spent $126 on phone cases alone. I was lucky he did not break the device. He also has a tablet and, well, that is a completely different review/story, but you should know that cost $500 this past month. The struggle is real.

Amber Tucker is the mother of a young son with autism. They live in Colorado.

When you love the child, but hate the autism

This mother does not love the immense suffering autism brings to her son and family. She invites critics to help, not judge.

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By Lisa Burger

Sorry if these pictures make anyone uncomfortable, honestly they make me uncomfortable too.

I feel that over the years, in an effort to show acceptance for people with autism, society has spent a lot of time focusing on the positive characteristics and talents some people with autism portray. In a way, this is a good thing, because for too long society put people like my son Caleb away in institutions because we assumed they were too stupid to understand anything or offer any value to anyone else. We had forgotten that God gives all people value regardless of their intellectual or communicative abilities.

We forget how challenging and heartbreaking the condition can be for families like mine.

Currently, I think we're getting to a point where when someone talks about a loved one having autism we immediately start to think of all these success stories, and we forget how challenging and heartbreaking the condition can be for families like mine that are more severely affected.

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Caleb is loved and valuable simply for who he is because God created him. We've gotten to a point where if you share the fact that you dislike autism, it's somehow synonymous with saying you don't love your child. This is ridiculous and untrue. 

If your child was blind, deaf, or paralyzed, and you said you hated the disability that prevents them from doing these things, no one would assume you do not love your child. 

Why do we do this to families affected by autism? Why do we make them defend their love for their children?

I think part of the reason is because those who have autism and can speak for themselves have found their identity in their disability. Therefore when we say we hate the disability, they feel we hate who they are.

I'd like to remind people, you're a person who is valuable, but you're not your disability. 

I struggle with severe social anxiety and depression. It's not my identity. My identity is Lisa Burger.

I've asked Caleb if he wishes he could talk, and he will always point to the answer Yes. So if he could change things, and allow himself to talk, he would. 

Does that mean he hates everything about himself and having autism? No. But a part of him does wish he were different "normal." Like everyone else. And it's okay for him to wish that, and it's okay for him to be disappointed that he can't do the things that the rest of us can do easily.

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Caleb is unusual in that he is a savant. Not all severely autistic people are. Caleb can read foreign languages, understand advanced math concepts, and has a photographic memory.

He also smears poop, tries to eat small plastic water bottle caps, gets dirt in his hair to the point where I'm afraid he's going to go blind if he gets it in his eye, head-bangs and breaks windows in my house and then tries to play with the glass, steals food from everyone around him, scratches, bites, pulls hair, drops to the floor like a toddler even though he'll be eight this month, and will attempt to wander off in public.

I'm here to tell you right now, it's okay for families like mine to hate this side of autism. It doesn't mean we hate our children. 

We hate their suffering. We hate worrying that they're going to hurt themselves or someone else. We hate the suffering it causes us as parents, and the suffering it causes their siblings. We hate not having enough time to pay attention to our other non disabled children because our attention is taken up with the child who needs more help. We hate not being able to attend certain events because our child with a disability can't handle it, and watching our other children miss out on things they would enjoy because their sibling cannot handle it.

People seem to think that I'm particularly gifted in the area of autism, but I'm not. My son didn't come with an instruction manual. He came with a disability, and parents who love him who are willing to learn along the way. Really, that's all it takes to help anyone affected by disability. Willingness.

Caring for others involves getting out of your comfort zone and doing something difficult in order to make someone else's life better, even if that means saying, "Lisa, you look super tired and emotionally exhausted, why don't you go sit down and take a break while I scrub the poop off the walls...." Offer practical help. It might be hard to watch a child with a disability for one day. I promise you it's harder for the people who watch them everyday. 

Honest acceptance means offering to help in difficult times, not indulging in fantasies.

Lisa Burger is the mother of a son with a severe form of autism.


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A Sister’s Quest to End Sexual Abuse of the Severely Disabled

At every level the system failed a nonverbal young woman who was raped. Her sister seeks justice and systemwide reform.

Julie Neward on her wedding day with her sister Natalie. (Photo: Stacey Pentland Photography)

Julie Neward on her wedding day with her sister Natalie. (Photo: Stacey Pentland Photography)

People with intellectual disabilities are sexually assaulted at seven times the rate of people without disabilities, according to NPR. One of those victims is Natalie, the younger sister of Julie Neward, who has since transformed into a dogged advocate for the care and protection of our most vulnerable adults. Julie founded Natalie’s Voice, a sexual assault prevention advocacy movement, and the California Sibling Leadership Network, which aims to network and empower siblings of those with developmental disabilities. Interview by Jill Escher, president of NCSA. 


Jill: How did you get involved with the issue of sexual abuse of people with intellectual disabilities?

Julie: My sister is a victim. On April 2, 2012 she was diagnosed with gonorrhea, which was life changing. It was a big, huge, raw moment for me. Natalie was born normal but at 27 months of age she suddenly fell into a coma that left her brain damaged. She has the cognitive level of a 10 month old. She’s nonverbal, epileptic, wears diapers, and communicates by moaning and through her beautiful brown eyes. She is exceptionally vulnerable.

Natalie was living at home with our mother and our younger sister, but attended a program in the community. Hindsight is 20-20 and for months prior to her diagnosis the signs and symptoms were quite obvious, but we just did not know. Natalie had been having a difficult time, moaning a lot and not sleeping, which was not like her. Doctors thought she had urinary tract infections and yeast infections. She was also having seizures, which hadn’t happened for years. She was passing bright red blood while being pottied, after returning home via transit from her outside caretaking facility, which prior to her diagnosis doctors thought were hemorrhoids. Then one evening when we were giving her a bath we noticed that her vaginal area was red and swollen. My mother rushed her to urgent care, where for the first time in all her medical visits, a doctor swabbed her for STDs (sexually transmitted diseases). 

The following day, while we waited for test results to arrive a few days later, we took her to the emergency room for a sudden onset of seizures, but Natalie was just given medication for a yeast infection and sent home.

And then she was finally diagnosed with gonorrhea?

Yes. We were in shock. It took so long to finally have an answer about what had been causing all this distress. And her doctors hadn’t bothered to look. It was a double shock, learning about the STD and the devastating implication that she had been raped. The system failed her in another way too. The doctors noted Natalie’s low cognitive level, that she cannot consent to sex. This should have triggered state-mandated reporting. But the doctors did not do that.

I called the police. They investigated but did not press charges, which is by far the most typical outcome when a person with intellectual disabilities is raped. We also pulled Natalie out of her program, where the director told us “You should have told us first and not called the police.” I personally told her regional center caseworker what happened. Yet the regional center offered no supports, no one reached out. There was a complete lack of alarm and support from our regional center system. There was no emergency IPP (individual program plan) meeting, no emergency services deployed, and it was not treated like a crime by anybody we told about the situation. 

Fast forward a few years, as Natalie’s co-conservator, I pulled her regional center (editor’s note: a California regional center is a nonprofit agency funded by the state to provide and supervise a network of services for people with developmental disabilities) file and began to investigate her records. I sat down with the executive director of our local regional center and walked them through it; it was evident there were errors. In her file, there was no mention of suspected abuse/rape, no police report case number referenced. There was one Special Incident Report (SIR) form in her file filed by her instructor, related to the police investigator inquiring about her history at the program. It was a self-report on the investigator asking about an incident that occurred months prior, where Natalie wandered at an excursion to a bowling alley. After my meeting with the regional center I called Community Care Licensing about the SIR and abuse report; they never received it. The person on the other end stated it was never faxed to them, or that no one in their office was working that area, assumed to be geographic based.

We filed a civil lawsuit against the facility where Natalie had been abused and it led to a confidential settlement. There’s a nondisclosure agreement signed by my mother that I am not at liberty to discuss. But it’s shocking to think that if Natalie didn’t get an STD we would never have known she had been sexually abused in the first place. Because of the privacy laws, the investigator was unable to test the workers at the outside caregiving facility for an STD to narrow down who the abuser could be. Natalie’s perpetrator is still out there. 

The system failed Natalie and your family in multiple ways. 

Yes. By the place where she was abused. By the regional center. By the medical professionals. By the mandated reporting system. By law enforcement. By Community Care Licensing. There was failure at every level. When the violation was discovered there was no alarm, no response. We need confidence in the regional center system that they can handle and respond to suspected abuse, but there was nothing even included in my sister’s files or to help manage this trauma. The regional center did not even refer us to the Family Justice Center of our county, which addresses sexual assault. We have a full system accountability issue.

How is Natalie doing now?

This happened seven years ago and is still very raw. She’s not in pain anymore, but emotionally you don’t really know. But it became apparent she was likely abused over some period and in multiple ways and that she had suffered terribly. She continues to live with our mother and we directly hire a female caregiver, through the regional center system, who helps take her out in to the community — staying at home all day is no life. Now we know she is in safe hands, but I would love to have more support for my mom at home, she is exhausted.

That’s one reason sibling empowerment is so important. They often have more time and energy than the parents, though it’s often hard for them too. During this traumatic time I got married, had two children and advanced my career. We want to do everything for our siblings but we are also limited by our own lives.

In what ways does having an intellectual disability increase risk for sexual abuse?

I will speak to what I know. Natalie is of a lower cognitive level. She has a special and subtle way of communicating with us but other than that she is nonverbal. A perpetrator is looking for someone like her who cannot talk and does not understand what is going on. People like Natalie can’t defend themselves, can’t report abuse, and can’t provide testimony in court. They are the perfect victims.

Based upon the information I’ve seen, the abuse tends to come from a small population of people who are repeat sexual abusers. The abuse tends to happen during the day, by people the individuals with disabilities know. It’s not at night at the hands of strangers. That’s why it’s so important to catch that one person and stop that multiplier effect. But with a population that is so vulnerable and cannot communicate, everything is just “suspected.” You can change all the laws you want but serial abusers will not show up in criminal background checks because accusations don’t stick.

So what can we do?

We need change at two levels: at the systems level, and also with empowerment of families and individuals. For a start, we need the system to acknowledge the epidemic of sexual abuse. I now sit on the State Council on Developmental Disabilities and am starting to stress that we need to fund education and the response to this crisis. We need a line item in the state’s budget; there is none for this year, but maybe next. 

Community Care Licensing is ultimately responsible for the quality of care, but we don’t have real data, it’s all behind the curtain. We have no way of knowing of the volume of confidential settlements, just like with the general #MeToo movement — sexual abusers, and their employers, get shielded by nondisclosures. I think secret settlements are a public health hazard and only protect the perpetrator, allowing them to freely abuse again and again. A close friend suggested that any entity that serves people with I/DD should be legally obligated to disclose nondisclosures, and now the #MeToo movement has really opened the door for that.

Neward with Tarana Burke, founder of the #MeToo movement, and her sisters Patricia (left) and Natalie (right).

Neward with Tarana Burke, founder of the #MeToo movement, and her sisters Patricia (left) and Natalie (right).

I firmly believe there are nondisclosure agreements all over the place and no one knows about them. Facilities and regional centers don’t want histories to be known because the system is stressed and adult services are already in jeopardy. Practitioners and medical professionals need to be more in tune with the I/DD population. I would like to see everyone with I/DD be routinely tested for STDs and other signs of abuse.

Getting down to the level of the individual, prevention of abuse should be embedded in every person-centered plan. This may mean certain type of staffing, or training, or supervision. But usually there is no budget for specialized staffing.

A male support worker was left alone with Natalie long enough to perpetrate sexual acts. Could there have been a plan that a male could not be alone with her?

I have been told that funding issues would prevent 2 on 1 staffing, even for brief periods like diaper changes. The concern is that there is already limited staffing, though at times I have been told an accommodation could be made. I have also been told that if a client is out in the community, it would be challenging to have two people for a diaper change as they would have to neglect someone else. It is not law to have two people and it should be, but we have funding/staffing challenges.

Sorry, back to the question of empowering individuals and families.

Yes, we need to put more power in the hands of the families and individuals, and technology will help us bring this to the next level. Video monitoring and wearable devices can help. I firmly believe we should have cameras in common areas, but this is highly controversial. They offer a false sense of security and we have to be mindful of privacy rights, especially in bathrooms and changing areas. Also, CCTV systems are very costly — it can be hundreds of thousands of dollars. You need someone to be monitoring them and due to storage capacity challenges, the footage may be recorded over within two weeks to a month. There is AngelSense for wandering which is great, but it is limited to GPS and does not take in forensic data that can prove abuse. Remember, abusers are usually known to the suspect in familiar places.

I’ve been working with Dr. Susan Abend of the Right Care Now Project. She has created an “inside-out” medical record system, where loving care providers can input information, not just the doctor. Using an algorithm, the monitoring system assesses health and quality-of-life information for adults with I/DD. The system could potential flag potential problems.

My big dream is that people with I/DD, who consent or have conservators who do, will have wearable devices that can track all sorts of data for quality of life and care. For example, a Fitbit can tell us heart rate, steps, location. If we had wearable technology, we could constantly monitor forensic data, we could see warning signs in real time. Now if a potential perpetrator wants to abuse your daughter  he will know she is being monitored, and be less likely to choose her as a victim. This is our most vulnerable population, this should be a commodity for them. I’m on the supervisory committee looking at technology solutions. We want to test this system and we want the state behind it. We are inching toward this program.

Even without technology, people with I/DD tend to have a routine, and patterns in behaviors. When you see people out of their pattern that’s a clue abuse may be happening; when routine is affected, behavior changes. Natalie’s behavior changed, it should have been a sign. Technology will help, but we should always be alert.

What progress do you hope to see in the next ten years?

We need everyone to fully understand that people with I/DD are highly vulnerable to sexual assault. We need truly effective planning and prevention tools, and a system where perpetrators brought to justice. We need families to demand change and accountability. Having a conversation with a caseworker about creating plans around abuse, for before, during and after, does not cost more money. It is a check box. Dr. Nora Baladerian of the Disability & Abuse Project writes about this. I want to see a world where people with I/DD are able to live their lives free from sexual assault, and their loved ones are relieved from worry.

As the mother of two children with nonverbal autism I want to thank you for sharing your family’s story and all you are doing to advance this urgent cause, Julie.

Thanks for speaking with me, Jill.

Julie Neward is a real estate professional and anti-sexual abuse advocate who lives in California. Learn more about her advocacy work at NataliesVoice.net and CaliforniaSibs.org.  This interview was edited for length and clarity.

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Including Severe Autism in Neuroscience Research

A decreasing proportion of studies include the severe end of the spectrum, which represents 30-50% of the autism population. This needs to change.

Leaders of an INSAR group devoted to improving inclusion of the severely affected in neuroscience research: Kevin Stephenson, Alison Singer, Charlotte DiStefano, Mina Kim, Mark Shen, Christine Wu Nordahl, and Mikle South, with Jill Escher, president of NCSA, at right.

Leaders of an INSAR group devoted to improving inclusion of the severely affected in neuroscience research: Kevin Stephenson, Alison Singer, Charlotte DiStefano, Mina Kim, Mark Shen, Christine Wu Nordahl, and Mikle South, with Jill Escher, president of NCSA, at right.

[Editor’s note: Alison Singer is the founder and president of Autism Science Foundation, a board member of the International Society for Autism Research (INSAR), and a board member of the National Council on Severe Autism. She made these remarks at a session of the INSAR conference on May 3, 2019 in Montreal, Canada.]

By Alison Singer

Thank you so much for inviting me to speak today. This topic is critically important because people with severe autism are being left behind. As I mentioned in the keynote address I gave at INSAR two years ago, many advocates have growing concerns that the word “autism” has grown to encompass something so broad that it is now meaningless. Autism used to mean something specific; until we moved to DSM-5 (Diagnostic and Statistical Manual 5), autism described a consistent cluster of symptoms. But today the phrase “autism spectrum disorder” has become such a big tent term that the people under that tent often have little in common with each other. Autism can mean genius, or IQ below 50. Autism can mean highly verbal or nonverbal. It can mean graduating from Harvard Law School, or “exiting” high school with a certificate of attendance. It can mean self-injury, sleep disorders, aggression, pica, wandering, biting, or not. Thanks to decades of research, we know autism encompasses core symptoms that are present in each person who is diagnosed, but their abilities are vastly different. 

If we are going to be able to personalize our approach to care and provide benefits to ALL people, we need terminology and language that are specific and meaningful. In fact, the DSM-5 was supposed to do this; it was supposed to provide greater specificity so that the diagnosis would point toward potential services, but because of the way DSM-5 is applied, the opposite has happened. Everyone is lumped together as having ASD. To the broader public, the word “autism” only describes the more verbal, traditionally skilled, visible end of the spectrum, because those individuals are able to have a voice, represent themselves at meetings, and appear in the media. Unfortunately, television shows like The Good Doctor are broadcasting this brand of autism, and only this brand, to the world. The result; autistic people with the most challenging behaviors have become invisible and are being left behind.

Earlier this year a new effort was launched to utilize the term “severe autism” when describing more classic autism symptoms. As with many issues in autism, there is no scientifically precise definition of what constitutes severe. Most consider the term to encompass individuals with autism who, by virtue of any combination of cognitive and functional impairments require continuous or near continuous, lifelong services, supports and supervision. Individuals in this category are often nonverbal or have limited use of language, have intellectual impairment and exhibit extremely challenging behaviors like self-injury or aggression that interfere with safety and well-being.

It’s difficult to put a precise number on this population, but national research from the CDC indicates that of the 1 in 59 children diagnosed with autism, 31% were found to have intellectual disability and an additional 25% to have borderline intellectual disability. 30% of people with autism are considered minimally verbal, and according to work by Helen Tager Flusberg and Connie Kasari, core autistic symptoms are typically more severe in these minimally verbal individuals. They are also more likely to exhibit challenging behavior. Overall, the estimate of those with severe autism is between 30-50% of people with autism. And yet we rarely see them on TV or at the policy making table.

Earlier this year, a new organization was formed, the National Council on Severe Autism, to represent this population. The president of that organization, Jill Escher, is here today. This group is committed to directing resources to this population and to making this population more visible. And already they are seeing success. For example, the term “severe autism” is starting to take hold, and in fact was used by NIMH (National Institute for Mental Health) Director Dr. Josh Gordon at a recent meeting of the Interagency Autism Coordinating Committee. It’s sticking because it’s meaningful. It describes a clear cluster of symptoms which is key to finding appropriate interventions, services and supports. 

One of the core goals of the new National Council on Severe Autism is to encourage research of this population. Recent trends in research have been toward focusing on higher functioning individuals; helping them find employment, for example, or studying ways to improve their social skills. A decreasing proportion of autism studies focus on the severe end of the spectrum. Profound impairments in communication, and disruptive behaviors often make cooperation with assessments and procedures challenging, and that’s why I am so glad this INSAR special interest group exists to share best practice on the very meaningful accommodations being developed and implemented to make autism research truly inclusive. Many members of this population cannot speak for themselves, and so this task falls to their parents. I think you will find these parents quite eager to participate in research, as in many cases it’s their children who have the most to gain. I hope you will utilize the resources of the National Council on Severe Autism and look to us for support and partnership. In closing, I want to close by thanking you for making a commitment to research those with severe autism and taking on the additional challenges this brings. 

Alison Singer is founder of the Autism Science Foundation and treasurer of National Council on Severe Autism. She is the parent of two daughters, one with severe autism.


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