"Everyone Is Employable," Except the Severely Disabled?

An enterprising autism mom creates a nonprofit to provide employment for those considered unemployable. But the future looks bleak for programs like hers.

Just because someone with a disability may have low productivity doesn’t mean they should be jobless for life.

Just because someone with a disability may have low productivity doesn’t mean they should be jobless for life.

By Kim Christensen

I’m mom to a 20 year-old daughter with severe autism. She has worked hard all of her life to acquire the limited skills that she now possesses. She is quickly approaching “the cliff,” the federal age limit of 22 when her school based support services will terminate. I see it rushing towards us like a speeding train and I question myself daily if I’m doing enough to prepare us both for it.

She is low-verbal, has a vision impairment, uncoordinated gait and her fine motor skills are pretty much non-existent. She also has behaviors and severe inflexibilities in her daily routines, but she possesses an infectious smile, and can hug her way into the good graces of perfect strangers.

Like all parents, I want her life to be meaningful, purpose-driven and for her to be a contributing member to society, in whatever way suits her. When I started researching adult services a few years ago, however, I saw few resources available, particularly for someone who is low-functioning with intense behaviors. But one day I had an “aha” moment when reading about a laundry service that employs adults with developmental disabilities. It seemed like the perfect match for her, and, given her obsession with washing machines, I knew it could be a dream job for her.

So two years ago I founded a nonprofit in the hopes of creating jobs for those who are considered unemployable. Our tagline and mission is simple: “Everyone is employable.” In our laundry business, my daughter and another developmentally disabled young woman now work side-by-side one day a week at a local laundromat, and then we all fold the linens together in my home. We have one corporate account, a sweet businesswoman who sees the beauty in what we are trying to achieve.

But what I dreamed of—a meaningful job and a paycheck—hasn’t panned out. The profit margin on the business is extremely low, and to the extent I could possibly grow the business, new federal bills, the Raise the Wage Act, and the Transformation to Competitive Employment Act, (Raise the Wage has already passed the house) would put an end to non-competitive employment, a change that would hit the severely disabled particularly hard. The reality is that despite the accommodations we have made (like a special folding table to help her) she still needs lots of assistance to fold anything. Under the new laws, I would have to pay all of our developmentally disabled workers minimum wage, whether it takes 15 minutes to finish, or in my daughter’s case, two hours. And that’s in addition to paying job coaches and supervisors (so far we’ve all been volunteers). It is simply not financially feasible to pay a person with low productivity minimum wage on such a low-margin business, even if she is my own daughter. That’s the heartbreaking reality.

Under the new bills, only the high-functioning would be employable, making a mockery of our tagline. Now our focus is to put our business income into starting an adult daycare center with some volunteer employment training focus. It’s not the shiny happy story I aspired to a few years ago.

Jobs without income can bring some benefits, like the feeling of accomplishing a task, being a part of a team, and having friends she looks forward to seeing. But it denies our children the right to real work, and to income that could help them and their businesses. Non-competitive employment must be a fully accepted and flourishing option for the severely disabled. It’s heartbreaking and nonsensical to crush the hope that “everyone is employable.”

Kim Christensen is the founder of Pathways to Employment, and lives in Granite Bay, CA.

Severe Autism: Trying to Cope When I'm Falling Apart

Far from her once-normal life, her world became IEPs, therapies, meltdowns, sleep deprivation, poop, door locks and barricades—and stress, loneliness and isolation.

 
“I will always love him desperately, but nothing can stop the pain and loss and fear for the future, both his and mine.”

“I will always love him desperately, but nothing can stop the pain and loss and fear for the future, both his and mine.”

 

By Claire Swainson

Yesterday, August 6th, my son Daniel turned 18 years old. Every year around Daniel's birthday I feel the same heartache. What should be an exciting day for my child means nothing more to him than any other. He doesn't care about presents or a party. He doesn't have friends. He likes the same things he liked when he was in preschool. Instead of giving him money—or whatever typical teens would want at that age—I’m shopping in the little tot section of the toy store or on a special needs website for "oral motor" stimulation toys.

I am about to say some things that many in my position wouldn't dare. If I am judged harshly for that, so be it. After all, it is only fair to tell the other side of the story. The one that doesn't appear to belong on the autism community websites and never makes headlines. The side that isn't about breakthroughs or savant talents. So here goes.

It is lonely and isolating to have a child like Daniel. This same routine, like a choreographed dance. 

When Daniel’s bus pulls up, it starts. He wants a "forest"... a stick. But only one off the tree in front of the house, and only the ones that are "just right" will do. And oh, that's right, the tree no longer has any that can be reached without a ladder. But you can't tell Daniel that because he doesn't "get it." So instead, he follows us around the house repeating "WANT FOREST!" for hours. Literally. 

Then he wants to "go for a ride." That is "Daniel-speak" for going to get fries at McDonald's. Again, he repeats "Want to go for a ride!" while following us around until we have either given in or mentally snapped from exasperation. We have had to nail the windows shut because he turned to climbing out the window and roaming naked when he couldn't get out of the locked doors. Now we are dealing with his newest and grossest fascination to date: smearing and playing with feces. He turned 18 years old yesterday, and I'm cleaning more poop than I did when my kids were babies. It is never-ending. Mind-numbing. Heart-breaking.

In this madhouse isolation, I don't recognize the person I've become. Sure, I have made a couple of failed attempts at returning to employment and a semblance of that life. But they are just that. Failed attempts. 

I can't relate to those with typical kids anymore, and most of my friends seemed to disappear within a few years of Daniel's autism diagnosis. My world became IEPs and therapies. Obsessions and meltdowns. Sleep deprivation and toileting accidents. Door locks and barricades to keep my nonverbal child from "eloping." Puberty with a child who still functions as a toddler. Doesn't converse or answer questions. Still watches Nick Jr. and PBS Kids. 

As autism parents, we are charged with responsibilities that far exceed any others. While I will continue this dance with Daniel for as long as I walk this earth, and I will love him desperately while doing it, nothing can stop the pain and loss and fear for the future, both his and mine. I miss my life, my friends, and honestly, I miss me.

Claire Swainson is a reluctant stay-at-home mom. She lives in Hendersonville, Tennessee with her husband and youngest son Daniel.


Disclaimer.png

Inside the Mind of an El Paso Autism Mom

The horror of a local mass shooting prompts ruminations on helplessness and vulnerability

By Rosanna Armendariz

walmart.jpg

On Saturday, August 3, 2019 my city El Paso, Texas experiences a horrific mass shooting that claims the lives of 22 people. My family is fortunate enough not to be at the Walmart or adjacent shopping mall where the attack occurs. So, on August 3, like many other spectators, I watch helplessly as the aftermath unfolds on every news network. However, unlike many others, I am an autistic adult with a child on the severe end of the autism spectrum and for both these reasons my thought process might differ from most.  

I watch people who manage to escape the shooter exit Cielo Vista Mall in a line with their hands up and I think about the hyper-vulnerability of those with autism. I wonder if my son would be able to exit in such a manner. If we were in a mall with a shooter on the opposite end and a 60-second window for escape, would my son be able to leave the building, get into line and walk across the parking lot with hands held above his head signaling to police that he is not armed? 

My son is only 10 but what if we find ourselves in this situation a few years from now? What happens if instead of walking in line with his hands above his head my son runs from the building screaming and flapping his arms? How does law enforcement react? Do they mistake him for the shooter? If my son and I are separated will law enforcement recognize that he has autism and provide him with extra assistance? If unattended will my son run from the scene and into traffic? What happens if an officer asks his name or some other routine question and instead of answering he begins loudly reciting from memory an entire episode of Blue’s Clues? On the scene of a mass shouting with adrenaline running high will harmless echolalia be seen as threatening? How does law enforcement react? 

Recently I have heard some discussion of police training to improve interactions with autistics, but I haven’t heard anything about how this training would play out on the scene of a mass shouting. So I sit glued to my television screen watching those lucky enough to escape a senseless death walk in a straight line to safety with their hands held high above their hands, and I can’t shake the dark creeping fear that in this situation my son with autism might escape the shooter only to be shot dead by the police.       

Rosanna Armendariz is a stay-at-home homeschooling mom. She lives with her family in El Paso, Texas.       

Disclaimer.png

Autism Housing: Today a Mirage, Tomorrow a Reality?

A report on the meeting of the Autism Housing Workgroup of the Interagency Autism Coordinating Committee

By Jill Escher

You are dying of thirst in the Sahara, dragging your parched body through the dune, and then you see it glimmering ahead: a lake atop the burning sand! But as adrenaline pushes you forward to salvation, you see the truth. It was all a mirage.

iacc+sign.jpg

Such was my impression of autism housing after participating in the Autism Housing Workgroup of the Interagency Autism Coordinating Committee (IACC), which met for a day of presentations on July 23 near Washington, DC.

Now, don’t get me wrong. It is great news that the IACC is spending time and effort to look into the autism housing crisis. Major kudos to Alison Singer, Samantha Crane, and other IACC members for pushing this urgent topic to the fore, and I was certainly pleased to serve on the group in my capacity as a scattered-site autism housing provider.

But the major take-away from the day was unmistakeable: we are facing an autism housing crisis of epic proportions, and while many promising models have been developed, the options fall dramatically short of what is needed, particularly for autistic adults with challenging behaviors.

Singer opened the meeting explaining this transient effort was not intended to solve our crisis, but instead to shine a light on the growing demand for housing and the emerging menu of models that can help serve the diverse population of adults with autism. Susan Daniels, director of the Office of Autism Research Coordination (OARC) stressed “this is a starting point for committee’s discussion of this topic.” A summary of the proceedings will be provided to the next iteration of the IACC if and when it is reauthorized by Congress (via Autism CARES Act funding).

Here are some not-necessarily-in-order commentary-strewn highlights of the meeting (pardon this short list, not enough time or space to reiterate everything).

Samantha Crane, Director of Public Policy at ASAN emphasized a point that pounds in the heart of autism parents and adults with autism alike — the need for affordability, community, and engagement and freedom from isolation, neglect and abuse. While we may quibble about how those ends may be achieved across our entire population, there is no question we share overlapping goals, and also the belief in person-centered planning and outcomes.

Eschenbacher explained that DD is defined by substantial functional limitations in 3 or more areas of major life activity.

Eschenbacher explained that DD is defined by substantial functional limitations in 3 or more areas of major life activity.

Heidi Eschenbacher, PhD, Institute on Community Integration at University of Minnesota, provided some background data. She estimates that 7.37 million in the U.S. have I/DD and  nearly 7% of U.S. children 0-17 have I/DD and DD (…a gigantic number!). In terms of those residing in state institutions, the peak was in 1967 with 194,650 living in institutions. As of 2015 the number is down to 19,502. Conversely, HCBS waiver utilization skyrocketed to 807,462 (2016), while ICF/IDs declined from 140,752 to 74,614 today. 

Desiree Kameka, Director of Community Education and Advocacy, Madison House Autism Foundation (and Autism Housing Network), emphasized a great number of shortcomings in our system, for example:

  • People do not understand their options, or how to navigate our extremely complex, fragmented system.

  • She frequently receives calls about autistic adults who are losing their primary caregiver (when a parent becomes infirm or dies). “This is happening more and more,” she said, and as someone who receives these desperate calls and emails all the time, I can vouch for the same.

  • Many adults disabled by autism fall through the cracks because their IQs are too high to be eligible.

  • Providers do not want to serve individuals with history of self-injury and aggression. Those individuals become isolated in the family home, and so are their caregivers.

  • Most adults with autism have NO CHOICE about housing because of the dearth of options and are forced to stay in family home.

  • Scattered site house is largely unaffordable.

  • Mate crime and abuse are rampant.

  • Institutional abuse and attitudes can happen in any setting. This is a cultural phenomenon: “The walls do no abuse people. People abuse people,” she says.

  • Autistic adults can thrive when they are given the opportunity to live their own life, but the status quo is not meeting the needs.

  • Kameka noted a decline in NIMBYism, but I’m not sure I’m inclined to agree. I regularly see community opposition to new DD housing projects.

  • She cited alarming statistics from some Colorado counties where 12.4k live with caregivers over age 60. Yet over the past 15 years fewer than 3,500 were given supports to move out of the family home.

  • In discussing autism housing, she stressed we need clarity about vocabulary, what we mean by provider controlled, consumer controlled, consumer directed, host family (provider controlled), shared living/roommates, and paid neighbors, for example.

  • Property types include, among others, accessory dwelling units (ADUs), bequeated family home, scattered site, owned homes cohousing, intentionally neurodiverse neighborhoods, planned communities.

  • The biggest barrier to community access if the lack of community skills of the autistic adult.

  • Person-centered planning is what matters most. The number of people in a setting is not a proxy for outcomes.

  • The amount of abuse suffered by adults with I/DD is “ridiculous” and we must do more to prevent abuse.

  • We need to consider the costs of not providing housing, because without efficient options, people end up in more costly settings.

  • We are facing a huge direct support provider (DSP) crisis, in terms of funding, training and career paths.

  • At what point are the states liable for lack of compliance with Olmstead (ADA) by failing to offer viable residential options for adults with I/DD?

  • We must focus on actual outcomes in service delivery models, not in abstractions.

Ivanova Smith, an adult on the autism spectrum commented that it’s important for adults with I/DD to move out of the family home and have an opportunity to grow up and become independent of their families.

Amy Lutz, member of the board of National Council on Severe Autism (NCSA), noted that there is no good data to compare rates of abuse and neglect among various settings and service models. Studies have been flawed, with policy decisions are based on values, not data. For example there is no data indicating that living in an apartment is safer than living in an intentional community. Lutz also stressed that most autism housing models exclude those with severe behaviors, such as aggression, self-injury and property damage. We need to explicitly offer models that include that sizable portion of the spectrum.

Jillian Copeland, co-founder of MainStreet Connect in Maryland, provided an oral public comment on her group’s 70-unit apartment building with 25% of units set aside for DD adults. It is a housing model and not a service provider, but the project includes a community center with 10,000 square feet of community space for social, educational, and recreational uses. They are a “BYOI” model — bring your own independence, since they are are not a service provider.

Susan Jennings, founder of Keeping Individuals with Intellectual Disability Safe (KIIDS) shared an oral public comment that her son is one of those who kicks down doors and elopes into traffic. He has been discharged from six different group homes, as none could manage his challenging behaviors. She cited systemic shortcomings to community group home, including severe abuse and toxic over-medication. His salvation was an ICF, and she laughed at the idea of “forced institutionalization” since “You can’t force your way” into an ICF since “they are closed or closing.” 

She said her son is far from an anomaly. About 40% of the autism population exhibits severe challenging behavior. Because of the lack of options, these adults often languish in psychiatric facilities, hospitals, or jails. The Olmstead Supreme Court decision recognizes that the ADA does not impel states to close institutions, and indeed that some individuals may need these setting for crisis periods or permanently. They must remain available, as they offer a superior form of care for a segment of the population, she said. There are very high costs to keep some adults “in the community” with too little assistance and supervision. “The state center is a bargain compared to the community,” and also provides her son a much greater degree of personal freedom. Also, unlike community settings, ICFs must meet rigorous standards to be certified. She drew attention to the direct service provider (DSP) shortage: “You are asking people to handle life-and-death emergencies at fast-food wages.” Finally she denounced the “cruel movement afoot” to defund out-of-home options. If parents do not have the ability to care for severely affected adults — who does? We must offer a full range of services.

A written commenter suggested a system of long-term care insurance, or an autism care fund to cover long-term care for adults with autism. Autism is treated the same as intellectual disability but is different it involves more intensive needs.

Jill Escher (moi) commented that there are two overarching issues in autism housing: quantity and quality. We must pay attention to quantity before nitpicking about qualities. The dramatic surge in autism has profound implications for expansion of our system, which is already at capacity. According to California data the adult autism population will quintuple over the next 20 years. Sharply increasing prevalence, combined with aging and inevitably dying parents portends a catastrophic crisis.

California DDS Autism Prevalence by Birth Year of Males and Females Born in the State

The autism tsunami, reflected here as prevalence in California, by birth year. Autism has become so prevalent that more than 2% of boys born in California in 2012 have ended up as autism cases in the Department of Developmental Services. The drop-off after 2012 births reflects the lag of cases entering the system, not a decrease in prevalence. (Source: California Department of Public Health, based on DDS data)

The autism tsunami, reflected here as prevalence in California, by birth year. Autism has become so prevalent that more than 2% of boys born in California in 2012 have ended up as autism cases in the Department of Developmental Services. The drop-off after 2012 births reflects the lag of cases entering the system, not a decrease in prevalence. (Source: California Department of Public Health, based on DDS data)

Max Barrows, a self advocate from Vermont, stated that a home should be not considered if more than four people live in it, that adults with autism should have the right to privacy and access to the community.

Dr Joshua Gordon, director of the NIMH and chair of the IACC, stated that there are lessons to be drawn across the full continuum of care, and given the urgent need to expand the number of units, we need scalable models that work for different needs.

Kim Musheno, VP of Policy at Autism Society, said that settings should depend on individuals’ desires and needs but that a big part of housing quality resides in the direct support professions. “We are not paying them enough to care for these clients.” Functional needs are critical to consider, not a diagnostic label.

Denise Resnik, co-founder of FirstPlace, AZ, stressed that no matter how you dice it, supported autism housing is very expensive and will require getting the private sector involved. Autism housing today is like where senior housing was decades ago, it’s an emerging marketplace.

Melissa Harris, Centers for Medicare and Medicaid Services (CMS) spoke by telephone about HCBS rules. She said waiver-funded services are “not a one-size-fits-all conversation.” It involves different needs, bringing a different idea of what community looks like. CMS is not looking “to inject a standardized way of living” but rather being driven by the person-centered plan. States have until March 2022 to achieve compliance, and the revised Guidance she hopes solidifies the idea that a variety of settings can meet the settings criteria. HCBS regulations are not meant to rid the country of a certain model or infringe on personal choice. It’s designed to say that the “individual-ness of the person” must be respected by the provider and the infrastructure.

Lori Ireland, incoming chair of the Autism Society of America, expressed concern that perhaps no other populations receiving CMS funding are subject to settings restrictions like those with disabilities. 

Then followed a succession of presentations about housing models. 

Denise Resnik wants housing and community options to be as bountiful for those with ASD as for everyone else. First Place is a residential private pay, private lease tuition program in Phoenix for those seeking to acquire skills to live independently. The residence has a 24/7, everyone has their own room, and the programs and residents are deeply connected to the broader community. The building hosts many autism-friendly amenities and features (my favorite were the auto turn-off stove and ovens). FirstPlace sees itself not only as a real estate developer but also as a community developer, creating community within a community but also a more autism-friendly region, including adding hundreds of employment opportunities . 

Krista Mason, founder of Benjamin’s Hope, Michigan, discussed being the mother of a large young man severely affected by autism. Over many years she helped develop Ben’s Hope, a residential property with many autism-friendly amenities and opportunities, based on a vision of community, engagement, or purpose. The farming element came from Ben and what’s important to him, and not from any interest Krista has in growing food. People often remark this development “feels different” — “it isn’t about the physical structures, it’s about our values” which focus on respect for the individual and purposeful engagement. Medicaid covers 75% of the costs of care.

Terry Hamlin, director at Center for Discovery in New York state, an agricultural college and continuous learning community that deeply engages with the local community. The Center serves some of the most challenging individuals in the state, including with severe aggressive, maladaptive behaviors. She showed some examples where the program successfully addressed health problems and anxieties and vastly improved quality of life for adults. Stress reduction—for the individual and the caregiver—is essential. 

Lindsay Johnson, from the Kelsey in San Jose, California, described this project which has not yet broken ground. This apartment complex will feature a range of incomes and abilities. She observed that “cities crave these projects,” which create inclusive options under the umbrella of affordable housing. She encourages housing advocates to work actively with housing developers who have the experience to get these projects done. “Developers need inclusion-minded individuals to help guide them."

Jim Whittaker, Arc of Jacksonville, Florida spoke on this 121-resident development, which serves those who can live independently with just enough support to get by. The Arc of Jacksonville village is walkable and transit-friendly. The residents live semi independently, with 5-8 hours a week of supported living coaching. It also has a 12,000 square foot community center, pool and other amenities. It offers very low rents but has a lengthy waitlist and almost no turnover. Eighty of the residents are employed in the community.

Matthew Osborne, of the Faison Center in Richmond, Virginia, a 45-unit complex with one-third of units set aside for adults with developmental disabilities said his residents have basic living skills but receive some supervision. 72% are employed, 83% receive a Medicaid waiver for supports.

Maedi Tanham Carney, Integrated Living Opportunities, Washington DC area. ILO is basically what we in California would call an “independent living services” agency. ILO does not provide real estate but instead a range of supports. About half the families use a waiver to pay for services. One goal is to create “long-term facilitation” for after parents pass away. I think this particular question — who will oversee care, act “in loco parentis,” after we parents die — deserves its own IACC meeting! It’s a giant question mark haunting countless thousands of autism families across the country.

Mary Anderson, ABLE, Inc North Dakota. This agency began in 1985 to help move residents of a state institution into group homes. Many were unhappy in the group homes, so they use a multi-family model. While choice is important, she notes that for all people “choice is limited to affordability.” She reality-checked the idea that scattered site housing is optimal by noting the sharply higher staffing costs involved.

Some of the housing advocates at the meeting (female edition?) were Alison Singer (IACC member), Desiree Kameka (Autism Housing Network), Amy Lutz (National Council on Severe Autism), Lori Ireland (Autism Society), Jill Escher (Claradon Properties) and JaLynn Prince (Madison House Autism Foundation).

Some of the housing advocates at the meeting (female edition?) were Alison Singer (IACC member), Desiree Kameka (Autism Housing Network), Amy Lutz (National Council on Severe Autism), Lori Ireland (Autism Society), Jill Escher (Claradon Properties) and JaLynn Prince (Madison House Autism Foundation).

As Amy Lutz said toward the close, it was remarkable how few options serve those with severe and challenging behaviors. There was little to ”alleviate the panic” of families; we need a discussion that focuses directly on the needs of this population. Alison Singer said the IACC has some purview and can make some inroads to open doors to options for all members of the spectrum.

After the meeting several of us commiserated about the need for a national policy agenda on this urgent issue. It’s time to roll up our sleeves and start the long-overdue process of reform.

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

Screen Shot 2019-07-09 at 7.55.55 AM.png

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

denial book cover.jpg


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

_________________________________

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

tiffany.jpg

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.

Tiffany Aidan Josiah pic.jpg

XOXO

Tiffy

Iphones and Autism: The Struggle Is Real

iphone.jpg

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.

iphone crack.png

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.