Friday, April 28, 2017

About That "Coming Avalanche" of Autistic Adults...

Greg Love

wave coast
Waves in Santa Cruz, California. © Wonderlane, Creative Commons
[image: Ocean waves breaking on a rocky shore.]
It is currently autism “awareness” month, that time of year when autistic people are told that they are costly and burdensome, that they ruin families, and—even worse—that they’re growing in numbers (oh, the horror.) A petition has even circulated, since Donald Trump took over the White House, claiming autism must be declared a "public health emergency."

While these ideas remain disturbingly common, some parents are changing their tune, albeit unfortunately not in ways that actually diverge from “awareness.” Nowadays, parents and professionals are increasingly alarmed at the incoming “avalanche” of autistic adults who will be ill-prepared for the lack of services and supports after high school.

It is true that the world scarcely cares to accommodate the support needs of autistic adults—yet at the same time it can no longer just “disappear” those adults into institutions like it used to. We have the disability rights movement to thank for winning important reforms over the last several decades, mandating access to the same education options available to non-disabled people. Basic civil rights like non-discrimination in public and private institutions and services, in hiring, in residential facilities, etc., had to be demanded before what should be considered routine accommodations were mandated by law.

Many autistic adults require access to—and deserve—quality services and support to guarantee that their basic needs are met, and to allow for full inclusion into their communities. But those services and supports simply do not exist in most communities. And being fully aware of this problem does not justify using the bigoted language of “awareness” to scare everyone into action.

I have a question. It is a question seldom asked by the “autism community” of non-autistic parents and “experts.” Why do we have this scarcity of services and support for adults? I’m not exaggerating. This simple question is never adequately addressed, if it is asked at all. When it is asked by some parents and professionals, it is erroneously framed as being based around an assumption, that this state of affairs was always going to exist because the world has yet to catch up with the reality of the “epidemic” at their doorsteps.

On the contrary, this is what I see: there is no incoming “avalanche” of autistic adults. There is simply autistic adults who would have always been born, who would have always existed whether or not services and support were available to them.

This is what I see: an “autism industrial complex” that has emerged in recent decades, with its purpose being the development of “treatments,” and locating the source of autism, to possibly cure it.

This is what I see: in childhood, an overwhelming focus on Early Intervention, extending as far back as two years of age or earlier, with therapies that are justified on the basis of teaching “skills” but which frequently consist of behavioral modification, compliance-training, and normalization.

This is what I see: a tunnel-visioned focus on autism as a childhood disorder that erases any notion that these children will grow up into autistic adults, with decidedly adult needs.

This is what I do not see: any ability on the part of the “autism community” to connect the dots, so to speak. While this community of non-autistic parents and professionals stumbles to come up with answers to the oncoming “crisis” of autistic adults, autistic adults are already here and have a lot to say about it.

Perhaps we ought to start with the obvious question: why is it that you continually separate the way autistic children are treated and the way autistic adults are treated? These are not separable issues. Autistic children are treated as “fixable” or amenable to “recovery” with intensive Early Intervention as early as age two. The “autism community” says that they should be subjected to hours upon hours of therapy to reduce “problem behaviors” and learn “skills.” This community believes that the only hope for autistic people is through experimental social engineering therapy that seeks an unmistakable goal of autistic erasure.

How can the needs of autistic people across their lifespan ever be properly addressed when so much money and energy goes into erasing their neurology before they ever reach adulthood? Meeting the needs of autistic people across the duration of their lives is incompatible with seeing them grudgingly as human beings after they’ve been through years of therapy and behavior modification and—shocker!—came out autistic in the end anyway.

So is there really an “avalanche” of autistic adults coming? Parent of an adult autistic daughter Cindy Godwin believes so, and she also doesn’t hold back on the insulting, pathologizing, and fear-mongering language that usually accompanies “awareness”:
“As the number of autistic children grows, so does the number of autistic adults. Their needs remain much the same as they age, yet the support they once received fades. Though families like mine are feeling it most acutely, this is an issue for everyone to consider. The tsunami of adults with autism is coming.”
We’ve now graduated from an avalanche to an even scarier and more devastating “tsunami.” She prefaces her piece by reminding her audience that “autistic children never really grow up.” So what do we do with these children in adult bodies?

She describes the “scene” found at her daughter’s town home, because boundaries like privacy need not be observed when it comes to your autistic kids. Her daughter may be almost thirty years old, but her mother considers her too "feeble-minded" to have any concept of privacy, and describes her daughter's executive functioning disabilities as though the young woman is a human zoo exhibit displaying "the autistic adult in its natural environment," for millions of people to read:
“She’s sitting on the sofa playing video games. Dirty dishes are everywhere in the kitchen, pizza boxes and empty soda bottles cover the countertops, the trash is overflowing and stinks, the patio is littered with cigarette butts, laundry needing to be done is stuffed into black garbage bags. The notice of a certified letter, announcing that she has been dropped from her therapeutic art program for non-attendance, sits on top of a stack of unopened mail and unread handouts from her counselor. 
"This was the scene I walked in on recently. “She” is my 29-year-old daughter.”
This mom, who states she “suffers combat level stress daily,” along with hundreds of thousands of other parents, evidently equates executive functioning disabilities with immaturity. Remember, “autistic children never really grow up.” As an autistic adult with similar executive functioning disabilities, I find Godwin's description of her daughter beyond insulting, but also realize it is standard fare coming from the “awareness” community.

To be fair, not all parents are fixated on the standard impending crisis and tragedy narrative. Father of an autistic son Raquel Regalado published a recent short piece entitled Time for Autism Awareness to Grow Up.
“As the parent of an autistic teen I can attest to the old axiom, “little kids, little problems, big kids, big problems.” And while we appreciate the social and developmental gains our children have made, the older they get the harder it becomes to find services, programing and opportunities for them because funding and public opinion is fixated on early signs and intervention.”
He is absolutely correct when he says, “funding and public opinion is fixated on early signs and intervention.” Let me be clear: this must be the starting point for the divided autistic community and autism community to find common ground in discussing the needs of autistic adults.

But there is an alternative to seeing this as an “avalanche,” and there is certainly no justification for using dehumanizing and pathologizing language to describe a problem that no autistic adult had any part in creating.

Autistic adults do face a severe lack of services and support. But they also regularly face an “avalanche” of bigotry from non-autistic parents and experts, and even the President of the United States, plus anti-vaccine cure cultists, Early Intervention and ABA social engineering conversion therapists, and a highly influential international organization that makes a lot of money but has little intention of using it to address the most important needs of autistic people and their families.

But let us say that there is an avalanche of autistic adults. I welcome it. Because autistic adults are adults, not children in adult bodies, and the failure to meet their needs as adults creates a space for them to begin advocating for the services and support they need. And more than advocating, but demanding it.

Unlike so many other parents, I don’t see myself as the “voice” of my own autistic son. When he grows up, he grows up into an autistic adult, and no matter his communication challenges (he is non-verbal now, but he’s also three years old), he can learn to advocate for himself along with other autistic adults.

Autistic adults are only a “crisis” when autism itself is understood as a crisis. There is only an “avalanche” of autistic adults when autistic children are understood as an “epidemic.” Accepting autistic people as autistic people, and allowing them the same self-determination that every other person has a right to regardless of their support needs, will turn this bogus avalanche into a simple issue of human rights. Never again should any person, based on their different neurology and disability, be described in this way.

Accept autistic children as autistic children and there will not be an avalanche, only a need to make certain that autistic children grow up to be autistic adults with their adult needs met, and fully accommodated.


A version of this essay was previously published at

Wednesday, April 26, 2017

Elizabeth Bartmess Interviewed on autchat, Autistic Community, and Autism in Fiction

Elizabeth Bartmess runs the autistics-and-cousins autchat discussions on Twitter, and also writes and critiques autism-themed fiction. We talked with Bartmess about why autchat matters, sometimes in surprising ways, and also about why "'Autistic character learns empathy' is the character arc I most wish would go away."

image: photo of a white person with short light brown hair and glasses, smiling
Elizabeth Bartmess
[image: photo of a white person with short
light brown hair and glasses, smiling.]
Thinking Person's Guide to Autism: Tell us about autchat. What is it, exactly? 

Elizabeth Bartmess: Autchat is a Twitter hashtag by and for autistic people and "autistic cousins"—people who have similar experiences due to other disabilities like hydrocephalus, cerebral palsy, ADHD, etc. We welcome people whether they are formally diagnosed, self-diagnosed, or wondering whether they might be autistic or similar.

We have weekly hour-long chats on our experiences, with topics such as  accommodations, burnout, and sexuality. During a chat, the moderator asks 4-5 questions and participants answer them. We post the questions online ahead of time for people who need more time to think, and people can chime in with answers any time during the week. Outside of chats, people may also use the hashtag to ask questions or post information of interest. We save transcripts of the chats to our website, to help keep a record of our collective knowledge.

The chats are Sundays 4pm Eastern, and the website has information on how to participate. We ask people who are neither autistic nor autistic cousins to refrain from posting on the tag, but everyone is welcome to read along or to check out the archives.

TPGA: How did autchat come into being? Was it a collaboration or a solo project?

Bartmess: Autchat came out of the autistic community on Twitter in February 2015. I'd been on Twitter for about a year then, and had met a lot of other autistic people and been having great conversations with them. Twitter is a very ephemeral medium, though—you have a conversation, it scrolls off your timeline, and you stop thinking about it. And if it's just between you and someone else, people who don't follow both of you won't see the conversation on their timelines. So I asked whether other people would mind if we started tagging some of these conversations so other people could find them by searching for the tag.

A number of people were interested. We came up with the #autchat tag, decided to try weekly chats, and collaborated on planning. The primary people involved back then were me, @AskCisco (who had been thinking along similar lines), @Ask_anAspergirl, and @erabrand, who also did our website. For a while, Cisco also ran a second autchat session on Sundays, where we revisited previous topics.

We've now been running for over two years have have had over a hundred and sixty chats on more than eighty topics. Some other projects have also come out of people who either met through autchat or were involved in planning it, such as Autistic Flappy Hour, a podcast run by autchat co-founder @AskCisco and two other autchat regulars; and the #AutismMeans hashtag series, run by me, @FilmSpectrum, and @rsocialskills. @neurocouture, an autchat participant, has also run a number of Twitter chats on autistic burnout on the #AutBurnout tag.

TPGA: Can you tell us about some specific instances in which you've seen autchat make a difference in someone's life, or in which you've heard it helped a person through a tough spot?

Bartmess: Specific instances blur together in my mind because there have been so many of them! For some people, it's their first foray into autistic community. Many people have said it's helped them with self-understanding, self-acceptance, and coping skills. Other people have said it's helped them get through their diagnostic process, or help make sense of things after a diagnosis. I know many people make friends through the chats and develop a sense of belonging to a community. I've also seen people say autchat has helped widen their understanding of what it means to be autistic. There are also some good stories in this post that @AskCisco wrote about autchat's origins.

TPGA: What are some examples of autchat scenarios that surprised you, or widened your understanding of other autistic people's experiences?

Bartmess: I was surprised by how central stimming is for many people, both with respect to coping and with respect to social experiences and the need for acceptance. My own experiences have centered primarily on difficulty with social scripting and figuring out how to respond to social cues—not so much now but certainly up through my early thirties—and I thought that would be more universal than it was. I also wasn't expecting sensory issues to be as salient a feature of many people's experiences as they are.

Another thing that surprised me was experiences with gender and gender identity. Before becoming involved in Twitter's autistic community, and in autchat, I hadn't realized how common it was for autistic people to be trans and/or nonbinary, or gender non-conforming.

TPGA: Are there any autchat topics you haven't broached yet? If not, why?

Bartmess: I have a list of almost twenty topics that have been suggested that we haven't covered yet (two of which I've thought of while answering these questions!), so the most common reason to not cover topics is just that I haven't gotten around to them yet.

There are some topics I would particularly like to cover, but haven't attempted. The biggest one is chronic interpersonal trauma, specifically abuse and bullying. I write most of the questions for the the weekly chats, and I try to write them so that participants can come up with useful things to take away. I don't know how to do that for chronic interpersonal trauma, in part because what we need often doesn't exist. There's very little effective treatment for chronic trauma specifically, and the treatments that have been developed are not widely available and don't take into account autistic and similarly neurodivergent people's specific needs and vulnerabilities, even though we experience abuse and bullying at high rates.  My worry is that because what our community really needs—effective and widely available treatment and support—largely aren't available to us, we'll wind up at the same place we started from at the end of the chat, and possibly in more distress.

There are also some topics I would like to run where I don't have the relevant personal experience to write good questions. We've had topic requests for co-occurring conditions like eating disorders, personality disorders, plurality, and psychosis. I'd also like to have a chat on race and ethnicity and how that affects experiences of being autistic or similar. I've been looking for volunteers to do these for a while, but have not had any success yet.

I'd also like to have a chat on autistic cousins and autistic communities. Communities formed by autistic people can be quite strong and sometimes also insular. That can be hard on neurodivergent people who have a lot in common with autistic people, but who are not necessarily invited to autistic communities and activities and may not feel comfortable joining in even when they are. I haven't had that chat yet because autchat's participants are almost always autistic, and the chat would need to primarily involve autistic cousins speaking and autistic participants listening. I don't have the cross-community connections to network for that and am not very good at reaching out. (I am open to collaboration, though. If someone who is reading this is a disabled person who shares significant similarities in experience with autistic people and would like to develop a Twitter chat or chats on this, either for autchat or as a separate chat, DM the mod account on Twitter at @autchatmod or email

TPGA: How do you think people who aren't themselves autistic can benefit from reading the autchat archives?

Bartmess: Some of the benefits for non-autistic people are the same as for autistic people: A better sense of autistic people's similarities to and differences from non-autistic people, and a better sense of autistic people's similarities to and differences from each other (as the saying goes, if you've met one autistic person, you've met one autistic person). Autistic cousins may get some of the same benefits that autistic people do, by seeing experiences they personally identify with, or ideas for new coping skills.

I think many people who read the archives, whether they are autistic or not, will be surprised by the range of topics and the many ways those issues affect our lives. For example, many people don't know that sleep difficulties, or differences in pain perception and expression, or difficulty eating, are common for autistic people, even if we know those are issues for ourselves personally, or for an autistic person we know. Popular representations of autism often focus on a limited number of topics, and have a narrow scope even for those topics.

TPGA: You are also a fiction writer, and a contributor to Disability in Kid Lit. What are some stereotypical autistic character arcs you wish would go away?

Bartmess: "Autistic character learns empathy" is the character arc I most wish would go away. There's a common and inaccurate belief that autistic people don't have empathy. While some autistic people do describe being lower in empathy than neurotypical people, it's very common for us to have painfully high levels of empathy. It sometimes looks like we have less empathy because we have difficulty intuiting how a given person wants us to express that empathy, and asking outright can sometimes make people angry. It's also hard to enact empathy when we're overstimulated or anxious or overwhelmed, and our energy is so taken up by the immediate situation that we have nothing left to give.

These are both situations where empathy and understanding from other people can help us get to a position where we can return that empathy and understanding. But it's common for us instead to hear that we're not empathic enough, and if we really cared about other people, we'd do what they want. Hearing that—whether in real life or in fiction—is frustrating, not just because it's inaccurate but because it means nobody gets what they what! And that belief—the belief that we lack empathy—is also sometimes used as justification for treating us badly.

Another character arc I would like to go away is one where we learn to "push through" or learn to tolerate things that, in real life, are either not good ideas for us to try to push through, or are not actually things it is possible for us to learn to tolerate. This is a variation on a larger theme where character growth is shown as becoming more neurotypical. That's depressing to read because, while autistic people continue to learn skills throughout our lifetimes, we don't become neurotypical; what looks like becoming more neurotypical / less autistic is often compliance with expectations that we act neurotypical regardless of the cost, and the cost can be very high.

A third character arc I'd like to go away is actually not a character arc at all—it's the absence of one, where an autistic secondary character is included in a story so that neurotypical characters can show they're good people, or included to provide conflict for other characters to work through (often in the form of being embarrassing to other characters in front of their friends).

When I wrote that article you linked to in the question I was thinking of things not to do—and I think if I wrote it again I'd focus more on arcs I would like to see, or like to see more of. (I still like that article and I'm glad I wrote it, but I wish I'd included more positive things.)

One thing I'm struck by in fiction is the rarity of autism-related arcs that are very common in real life. For example, realizing you are autistic, or being diagnosed, as a teen or adult, and re-evaluating your life in light of that. Fiction often shows us as already diagnosed (and in fact I can only think of one major exception in kid lit—Rogue, by Lynn Lachmann-Miller, an autistic author, although there are some books that never identify us as autistic at all).

Another real-life arc is joining autistic community; many books have one autistic person and that's it, although there are some great exceptions, especially by autistic authors. Other real-life arcs include learning to better advocate for your needs and improving your self-care skills, and learning coping skills for things that don't show up in fiction much, like autistic inertia and other aspects of executive dysfunction, or motor issues.

All of those arcs involve the opposite of becoming more neurotypical, and in real life they often involve becoming more visibly autistic. So they don't necessarily look like character growth to people who haven't lived them, or who aren't on close terms with people who have. But they're some of the most important and helpful character growth we can have.

And, of course, autistic people go through character growth that isn't specifically about being autistic, and I'd love to see more of those arcs, too.

TPGA: Who is your favorite autistic character in literature, and why? What resources would you recommend for people who want good portrayals of autistic characters?

My favorite autistic character is Oscar from Anne Ursu's middle grade book The Real Boy, for many reasons. He has domains of competence and difficulty, and he has adventures that are not specifically or exclusively about being autistic—while still being portrayed as autistic throughout—and winds up being a hero. The book is very good at portraying his internal experiences, and some of his difficulties with social cognition are quite close to ones I had when I was younger.

My favorite resources for good portrayals of autistic characters are Disability in Kid Lit (which includes reviews of both good and less good portrayals), and Ada Hoffman's Autistic Book Party, which has a stronger focus on fiction for adults, particularly science fiction and fantasy. It includes novels, as well as many recommended short stories that are available for free online.

Monday, April 24, 2017

What Happens to Autistic People in Prison?

What happens to autistic people in prison? We spoke with Clare Hughes, the Criminal Justice Coordinator for the United Kingdom's National Autistic Society, about the unique experiences of and considerations for incarcerated autistic people. Clare has been leading on the NAS's work expanding its accreditation programme to police forces, prisons, and probation services. Note that while some discussed issues are UK-specific, many can be generalized.

Photo © Dave Nakayama/Creative Commons license
[image: Prison cell bars, with the background cell itself slightly out of focus.]

Clare Hughes: We don’t know how many autistic people there are in prison in the UK: information about people diagnosed with autism isn’t collected routinely for the general population, let alone for prisoners, and many will be undiagnosed.

HM Young Offender Institution (YOI) and Prison at Feltham diagnose young people in the prison, if they are there long enough. In February 2016, they identified that 4.5% of their population had a diagnosis of autism, which they’d received either before or at the prison. It also requires main grade prison staff to refer prisoners they suspect are autistic.

From discussions I have had with prison governors, they don’t think that numbers of autistic prisoners are large, but the impact on the prison can be significant as they struggle to identify the best ways to support them. Some prisons are aware that autistic prisoners are spending—and often choosing to spend—extended periods in Care and Separation Units (segregation), as they are quieter environments, without contact with other prisoners.

The National Autistic Society is currently actively working with eight prisons, who have registered with Autism Accreditation. Autism Accreditation is a quality assurance programme that has been in existence for almost 25 years.

HM YOI Feltham in West London was the first prison to achieve Autism Accreditation in 2016, after we’d worked with them to develop the specialist Autism Accreditation Standards for prisons. We have since had over 30 prisons interested in Accreditation, following a letter recommending Autism Accreditation sent to all prisons in England and Wales by the then Minister for Prison, Probation and Rehabilitation, Andrew Selous MP. The Minister also asked us to look at developing accreditation standards for probation services which have done and these are currently being piloted. Following this work, we had police forces interested in the programme.

Thinking Person's Guide to Autism: Is there a sizable autistic population in UK prisons?

Autistic people can end up in the prison system, just like anyone else. Although the exact number of autistic people in prison isn’t known, in HMYOI Feltham in February last year, they represented 4.5% of the population. (Note this is an ever-changing figure, as people are released and others arrive.)

What is clear is that research has found that autistic people “represent some of the most vulnerable people in the offender population.”*

Prison governors have told me that, although the number of autistic prisoners isn’t high, they can have a significant impact on the prisons as staff struggle to identify the best ways to support them. Some of the prisons I have visited identify that autistic prisoners are spending, and even choosing to spend, extended periods in the Care and Separation Units (segregation), as they are quieter environments, without contact with other prisoners.

* Talbot, J (2008), No one knows: Prisoners Voices: Experiences of the criminal justice system by prisoners with learning disabilities and difficulties. London: Prison Reform Trust.

TPGA: Does the population the National Autistic Society works with include suspected but undiagnosed autistics?

Hughes: Our Autism Accreditation programme is designed to be beneficial for all autistic prisoners, whether they have a diagnosis or not. For a prison to be accredited, their staff will work with us to implement standards developed specifically for prisons across every area of their work, which will ultimately improve the identification and support of autistic prisoners. These changes include familiarising staff with autism, allowing autistic prisoners to use communal areas at quieter times and making reasonable adjustments to the building, such as creating areas with less clutter. The changes are all relatively straightforward but they can make a huge difference to the lives of prisoners and staff alike.

The development of the prison standards for Accreditation started in 2014 when the mental health team at HMYOI Feltham (run by Barnet, Enfield and Haringey Mental Health NHS Trust) asked if we would consider developing our existing Accreditation standards, which have been running for around 25 years. The prison had previously audited their mental health services against another audit tool, but felt that in order to provide the best outcomes for autistic prisoners, they required a specialist response and, most importantly, a whole-prison approach as autistic prisoners were affected by a wide range of issues, including the physical environment. We then worked together to develop standards relating to the custodial aspect of the prison, education mental health and primary care.

As part of this, we also looked at a thematic review that had been carried out by Her Majesty’s Inspectorate for Prisons and Probation in relation to the treatment of prisoners with learning disabilities and/or autism in the criminal justice system and incorporated their recommendations, particularly around improved communication, which will, of course, benefit to anyone with communication issues.

The then minister, Andrew Selous, heard about the work taking place at HMYOI Feltham and visited to learn more. Following his visit, he wrote to all prison governors across England and Wales, encouraging them to consider Autism Accreditation. Feltham has since become the first prison or YOI to be accredited, and the project last year won the Royal College of Speech and Language Therapists’ Sternberg Clinical Innovation Award. This was shared between project partners Barnet, Enfield and Haringey Mental Health NHS Trust (who provide the mental health services at the prison), the National Autistic Society (NAS), and HMYOI Feltham. We’ve also had another 30 prisons and YOIs contact us to express interest in Autism Accreditation and are currently working with eight of them, including Feltham.

TPGA: Do you know if the proportion of incarcerated autistics is similar in other countries?

Hughes: We are no aware of any definite prevalence data about any prison population, nor how this compares to the UK.

TPGA: Does being autistic affect one's chances of being incarcerated? If so, why?

Hughes: The vast majority of autistic people are law abiding and respect the rules of society. Indeed, in many cases, autistic people are unusually concerned to keep to the letter of the law.

But there are of course cases where autistic people, like anyone else, can commit a crime. There are also cases where someone's autism may have a bearing on their behaviour. For instance, autistic people can have difficulty understanding unwritten social rules or how the world works, which can leave them open to being taken advantage of by others (Autism Together have been running a campaign around this so-called mate crime).

Autistic people can also be misunderstood by professionals within the criminal justice system, which is something I’m trying to change in my work. There’s a tendency, particularly in relation to some serious crimes including terrorism and sexual offences, for criminal justice professionals to interpret ‘odd’ as ‘dangerous,’ which may bring autistic people into contact with the criminal justice system or to their behaviour being seen as more serious in its intent. For example, if someone commits an offence related to a special interest, they may speak about it in great depth and passion when asked, leading people to think they are cold and calculating. Likewise, many autistic people struggle with eye contact and this can be interpreted as having something to hide.

More and more professionals are starting to understand more about autism and the different ways autistic people may respond to situations. This should help prevent people’s behaviour being misinterpreted and lead to better responses to divert autistic people from offending, or improved programmes to help prevent further offending.

TPGA: What kind of problems do autistic people encounter in prison that tend to be specific to their disability?

Hughes: Autistic people can have extreme sensitivities to things like light and sound, so the often busy and loud prison environment can be a real challenge. Prisoners shout to other prisoners, prison officers shout to prisoners, prison officers shout to other officers, there is the sounds of keys jangling, heavy cell doors being banged, an almost constant smell of cleaning products, strong smell of food at mealtimes, and minimal natural light. All of these can be incredibly challenging for autistic people, especially as there’s nowhere to retreat to.

However, there are other elements of prison that work well for autistic prisoners, who can struggle with change and seek out routine. Prison life is very structured and fairly predictable, with everyone receiving a set of rules when they arrive and seeing the same faces each day. But a sudden break to this routine, can be really hard for autistic prisoners. For instance, if there’s an unannounced cell search or an incident.

Rules aren’t always adhered to as rigorously as some autistic people would like to see and there are times when they may become confrontational with others about this. It’s a unique experience to have written rules of what is expected of you and others and, understandably, it’s really difficult for autistic people where others don’t stick to these rules.

There are ways to help autistic prisoners to cope with these challenges, which is something we make clear in our Autism Accreditation work. Some prisons are beginning to provide information to prisoners explaining that these sudden disruptions can happen, what the process will be before, during and after, and why staff will be unable to tell them when and why this is happening. There will still be autistic people who will be very anxious about this, but their anxiety will be reduced by having prior knowledge that this kind of thing happens and what the process is and, wherever possible, trained staff who understand how challenging this is for them.

TPGA: Are there some situations in which autistic prisoners' experiences are, relatively, not entirely negative, with regards to providing routine, etc?

Hughes: There are elements of prison that work well for autistic prisoners. Prison life is structured and fairly predictable, with everyone receiving a set of rules when they arrive and seeing the same faces each day.

I’ve also seen first-hand how understanding and support from prison officers and staff can transform the lives of autistic prisoners. For instance, there was an autistic man, who also had OCD and ADHD, in one of the prisons that I worked in. When he arrived, staff didn’t fully understand what any of those acronyms meant, but they knew that he was vulnerable. They provided a support system around him made up of other prisoners and prison officers and saw a real change in his behaviour. The autistic man even said that prison had been the best thing that had happened to him. I have met some incredibly passionate prison officers who want to learn more about autism and the best strategies for supporting people in the prisons that they work in.

TPGA: Do you see many cases in the UK similar to that of African-American autistic Neli Latson, whose arrest and incarceration were largely due to lack of supports and understanding about autism?

Hughes: This is a really shocking case. While it’s in the US, which has a different criminal justice system to the UK, and we’re not aware of such a serious UK case, Neli Latson’s experiences do highlight how autistic people can get caught up in the criminal justice system and how misunderstandings around autism can escalate things. This, and other cases in the UK, demonstrate why it’s so important that the police and other criminal justice personnel have autism training. This would help them to understand the additional communication challenges faced by autistic people and how to prevent escalation.

The NAS has also got lots of information for autistic people and criminal justice professionals on our website, including tips and guides:

TPGA: What kinds of practices and policies would you like to see change, for the well-being of the autistic people in question?

Hughes: The most important change would be to have autism training delivered as a matter of course to all staff working in the criminal justice system, from police and courts to prisons and probation.

We’ve shown how this can work, through our project at HMYOI Feltham and early work with police and probation services. A growing number of staff are also calling for this too as training has a significant impact on their ability to carry out their role. It’s important that each of the agencies share this information with one another too, so they can learn and spread best practice.

Quality standards like Autism Accreditation can also help ensure that there’s the best possible autism practice relevant to each criminal justice agency.

We also believe that there need to be more specialist programmes to divert autistic people from committing offences, sometimes unwittingly, and where they have offended, to prevent re-offending, which understand the particular motivations and communication styles of autistic people.

Monday, April 10, 2017

Hey Parents of Autistic Kids: Here Are Five Big, Avoidable Mistakes

Shannon Des Roches Rosa

Resting after a long hike. Photo © Shannon Des Roches Rosa
[image: White teen boy with short brown hair, seen from
behind, sitting on a hilltop bench overlooking an ocean.]
If you're the parent of an autistic kid, you probably get advice thrown at your head from every angle, all day long. You may even be all done with advice. And I hear you, because I am you.

But I also have had the great good fortune to be connected with some of the most insightful autistic and autism professionals and thinkers on this planet, who have transformed my parenting approach completely, and to the benefit of my teen son Leo, as well as myself. 

As I have become increasingly devoted to "learn from my mistakes, so you don't repeat my mistakes," here are five bonks I made during the early years of parenting my autistic son, and how you can avoid repeating my fails:

1) Focusing on Awareness Instead of Acceptance

Autism acceptance wasn't a thing in the American culture in which I was both raised and taught to parent. Americans tend to think of autism and disability as either other people's problems, The Worst Thing That Could Ever Happen to a Family, or grist for arguments that non-disabled people should appreciate their special non-disabled lives. Even respected progressive media outlets tend to take these stances. 

Parents like me are told we need to focus on building awareness, which means opening  other people's minds to the concept that autistic people like my son exist. Which would be fine, if awareness also came with the benefits of respect and understanding.  But it doesn't. "Awareness" lets people think it's OK say ignorant things like, "Oh, I heard you can cure autism with a bleach enema," or "I'm so sorry about your son's autism epidemic," or even "Aren't autistic people all violent psychopaths?"

Awareness underlies misunderstandings such as assuming autistic people are either all children, or remain children for life. Which then leads to autism efforts that neither include nor consult autistic people, plus parents or professionals feeling entitled to able-splain "what autism is really like" to ... autistic people. These too-common results are the opposite of helpful.

Awareness also doesn't prevent innocent autistic people like toy truck-holder Arnaldo Rios from being mistaken by police for a violent suicidal gunman, nor does it prevent autism professionals like Arnaldo's caregiver Charles Kinsey from being shot for trying to comfort an agitated autistic person while Black.

These are just a few of the reasons why parents need to work on autism acceptance, on helping not just our own selves but the whole damn world understand this truth: our autistic children have autistic traits that make them autistic, and they are also real human beings with real needs who deserve real respect. Real acceptance means supporting and accommodating our autistic kids without being hellbent on "fixing" them, and being conscious of “the law of expressed emotion,” as described in the recent Invisibilia podcast, The Problem With The Solution, that “our private thoughts about a person, our disappointment in them or even our wishes for them to get better, shoot out of us like lasers and can change their very insides.”

Acceptance means rejecting the idea that there's a "normal" child trapped inside your autistic child, for the sake of your child's health, heart, and soul—as well as your own. It is reasonable to want your child’s life to be easier, and work towards that. On building skills for better coping with people and situations that are rarely considerate of autistic needs. But if you have an autistic child, it isn't realistic or healthy to expect them to not be autistic.

2) Obsessing Over "Age-Appropriate" Interests


It should be fine and dandy for people to like what they like, as long as they're not hurting anyone. Unfortunately, when it comes to autism, things people really really like tend to be viewed solely through the lens of disability, if not pathology: what might be viewed in a non-autistic person as a passion becomes an "autistic special interest." And woe to the autistic person whose passions are seen as only appropriate for younger people!

This is part of that acceptance mindset again: parents need to jettison worries about autistic kids' interests being age-appropriate and focus on what, for your child, is happiness-appropriate. Otherwise, you'll not only make your child sad and possibly even miserable, but you could be destroying opportunities to connect with them. In the new movie Life, Animated, an autistic young man's love of animated Disney movies gave him scaffolding not only for making sense of and relating to the world, but provided him with scripts—functional echolalia—to communicate with his delighted family (who had been told by professionals that his echolalia served no purpose, grrr). 

With people like my son Leo, for whom speaking comes slowly and carefully, building language skills requires extended observation, absorption, and scripting. Sometimes he needs to practice hundreds or thousands of times before feeling comfortable trying new words, and watching familiar videos or scripts (and yes, even ones meant for younger kids) can help with that. My son says novel things about videos he’s watched thousands of times before, almost every day. Why would I tell him he can't watch what he loves, when his favorite videos continue to help him learn?

3) Making Everything Therapeutic. Even Fun Things.

I have been guilty of this in the past (and possibly in the paragraph directly above): making sure that everything in Leo's life has some sort of therapeutic value, instead of making sure he has space in his life for happiness and fun. I recently observed this type of "what is awesome for non-autistic people is therapeutic for autistic people because they are autistic" with Pokémon Go:
“A mum has described how Pokemon Go has helped her autistic son leave the house and socialise with other people for the first time. She hopes that the effects of the game will carry over into the rest of his life, with Ralphie becoming more social, less rigid and wanting to get outside. "We're letting him enjoy the game but we're also trying to help him learn he doesn't need the game in order to do those things," she said.” 
As parents, we need to be really careful to distinguish between "this thing is making my kid be the person I want them to be but they aren't," and "this thing is making my kid happy and making it easier to do things that are hard for them." Let your autistic kids have fun, people!

4) Assuming Speaking Is the Only Form of Legitimate Communication

This is an intense one. And one that makes me so sad. I hear from and read accounts from parents nearly every day, talking about their "non-verbal" kids, about how speech therapy never worked, about how they can't reach their kids and how it makes those parents so sad.

I'm guessing it makes their kids even sadder. Especially if their kids have never been given communication options other than oral speech. Because not only can everyone communicate (even if it's as basic as yes/no, or even just "no") when given the right tools to do so, many autistic people have motor planning or related disabilities that make it hard to speak or respond appropriately even if they understand everything being said to them.

So if your child needs communication support, be sure to press hard for alternative communication evaluation and options. If your local resources or school district don't know where to start, send them to the website PrAACtical AAC, which is dedicated to best practices for Augmentative and Alternative Communication (AAC) professionals, and which you should read through yourself for ideas.

5) Buying Into the Stereotype That Autistic Kids Aren’t Empathetic or Social 

It is extraordinarily damaging to treat autistic people as emotion-free, antisocial robots. As Louise Milligan writes in The Guardian,
"The idea that people on the autism spectrum don’t know or care about other people is offensive and wrong. It makes their ability to navigate a path through this world so very vexed. Let’s be very clear: how people with autism might appear in company and what they know or think about, or care about, are quite distinct things."
And this goes back to that Acceptance concept: If you understand that being with other people can be challenging for an autistic child because social cues are confusing, and the world is filled with “light, colors and noises so intense” that your child can't think let alone interact, then you're more likely to stop confusing inability to handle socialization under stressful circumstances with dislike for other people.

(Though, to be fair, as with non-autistic people, some autistic people do prefer their own company.)

What Can You Do? Just Keep Swimming.

How can you get it right? Well, I recommend acceptance, as you might suspect by this point. And learning from the parents in the movie Finding Dory. As Alice Wong writes, "[Dory's parents] Jenny and Charlie are like many parents of kids with disabilities:

"They worry about her future
"They teach her life skills that she will need
"They are protective about Dory and her safety (“Watch for the undertow!”)
"They show joy and love of Dory being Dory"

Some autistic people, as well as people with other disabilities, say Finding Dory is hard to watch, because they lived through and so deeply empathize with how other creatures shun and second-guess Dory, and condition Dory to constantly apologize for existing. But Dory's parents never wavered in their complete love and acceptance for her.

Be like Jenny and Charlie. Love your kid. Let your kid know you love them, and are on their side -- no matter how badly the rest of the world behaves. Let them know they can always depend on you, that you accept and adore them, and that anyone who doesn't automatically feel the same way just needs to catch up. Because if we all work hard enough on that acceptance thing ... maybe everyone else actually will catch up.

A version of this essay was previously published at

Friday, April 7, 2017

If Not ABA, Then What?

Maxfield Sparrow

Family | Happy Birthday to Mammy
Photo © Aikawa Ke, Creative Commons license.
[image: Taiwanese mother and child playing together
in a sand box, and smiling for the camera.]
In the two and a half years since I published my essay on ABA therapy, and it was republished in the book The Real Experts, I have been asked this question more than any other: "You’ve convinced me to avoid compliance-based therapies ... but what else is there? We are not coping well in my house. What can we do?"

I have spent the last couple of years answering that question again and again, on an individual level. I knew I needed to write this essay answering that question, but life kept getting in the way. Still, the question kept coming, from people all over, and I knew I could put it off no longer. So here we are, dear reader, and I hope that I am able to offer you some help and hope with these words.

You are a parent who is struggling and feeling desperate, but you’re firm in your resolution to avoid subjecting your children to dog-training techniques and spirit-crushing compliance methods. So let’s talk about your alternatives for one of the most common situations in which families tend to end up bringing ABA into their lives: aggressive behavior.

“We’re afraid for our lives!” I’ve heard this from so many parents. Their children lash out and hurt others. The children grow older, bigger, and stronger and continue to lash out. The family fears for their lives. In some cases, the police get involved and the children end up with involuntary commitment, facing criminal charges, or even injured or killed in extreme cases.

No one wants this for their child! No family wants to be forced to choose between fear for their child and fear of their child. It’s small wonder that families end up choosing ABA, and medications that serve as “chemical straitjackets.” Situations can get scary fast, and families can feel helpless.

But there are many things you can do to keep everyone calm, keep situations from escalating, and even keep situations from happening at all. I am not going to re-invent the wheel here, because so much great advice has already been written and published on dealing with aggression. Instead, I’m going to curate the best advice I’ve seen online through the years. (That means this essay requires you to do a lot of extra outside reading, but it also means you are about to get so much more great advice than I could fit into the few thousand words of just one essay.)

I’d like to start with the excellent aggression checklist from We Are Like Your Child. It is a great list of things to consider about your child’s environment and health, in order to understand the source of the aggression.

I would like to add that the aggression will not always appear right next to the triggering event. What do I mean by that? Let me explain with an example. Maybe reports from school say that your child is well-behaved at school, but you are noticing a lot of aggression at home. You have examined all aspects of your home environment and just can’t figure out what is triggering the aggression. You’ve tried asking your child to help you figure out what’s wrong but they haven’t yet developed the ability to communicate the problem clearly.

It is possible that the aggression trigger isn’t happening in your home at all. Maybe there is bullying on the school bus, or maybe the school is using some of the techniques that you have been warned about in my ABA essay, or the We Are Like Your Child checklist.  Or maybe the trigger is something else entirely, but still something not in your home.

So why is your child or teen or young adult being so aggressive at home instead of in the place where the triggering problem is occurring? The answer: because your child feels safe at home.

The problem is like a flame under a boiler and the pressure is building in your child. But if letting that steam escape is too dangerous—say, for example, it leads to take downs, restraints, seclusion rooms, or worse—your child learns to hold the pressure in for self-protection. But there’s only so long a person can do that: as soon as it’s safe, the steam explodes out, in the form of aggressive behavior. This is why it is so important to look at every part of your child’s environment when you’re trying to figure out why aggressive behavior is happening.

Sometimes aggression is the only way your child has to communicate that something is wrong. ABA might be able to stop the aggression, yes. But at what cost? Do you want your child to be trained to put up with pain and abuse? Of course you don’t! That was a ridiculous question. But it comes with an obvious answer: don’t use behaviorism to train your child out of aggression. Ferret out the source of the aggression and remedy it. It might be something in the environment, it might be the way someone is treating your child, it might be a health issue your child is struggling with. Whatever it is, play detective. Figure it out and help your child.

In The Case For Backing The Frick Off at the blog Love Explosions, Beth Ryan explains why she advises reducing Autistic kids' therapies and interventions. For some people this will be counter-intuitive. Parents are usually encouraged to believe that more problems should be addressed with more therapies and interventions. But Beth suggests more accommodations and respect instead and I completely agree with her.

Beth talks about learning how to handle her daughter’s hair in ways that are less painful and more pleasant, thus reducing outbursts. ABA would work to train Beth’s daughter to put up with the pain and misery without complaint. Beth took the much simpler route of learning how to be more gentle and touch her daughter’s hair in ways that weren’t so painful and awful. “I spend a lot of time thinking about what sets Evie off in any way. And I try my very best to support her by accommodating her whenever I can.” It’s such a simple solution, really: figure out what sets someone off and avoid that.

Sometimes avoiding a trigger can be easy. Other times it can be quite involved. In my book, The ABCs of Autism Acceptance, I wrote about a parent whose Autistic daughter would have a meltdown if someone used the stove. Careful investigative work never revealed what it was about the stove that bothered the girl, so the family just stopped using it. They would cook using the microwave or crock pot, serve cold lunches like sandwiches and salads, or order delivery food. It was an unusual solution that required the entire family to adjust, but it worked and resulted in a happy and secure child who was not experiencing overwhelming anxiety leading to aggression.

When you accommodate your child, you may encounter resistance from family members, extended family, friends, neighbors, professionals. People might tell you that you are coddling your child or catering to them. Stand firm. Your child or teen or young adult is not misbehaving on purpose. They are trying to cope with a world that is a sensory nightmare, and anything you can do that increases their sense of stability and safety is a loving gift to them.

I hope you are beginning to see that the aggressive behavior is coming from something that is painful and difficult for your child. You want to stop the aggression because it frightens you, but you really want to stop the aggression because it is coming from a place of great suffering and you don’t want  your beloved child to suffer.

Beth has another really helpful essay on Love Explosions, Caregiver Burnout. She opens by explaining how much she hates that phrase, because it seems to imply that Autistic children are burdens that grind down their parents. But she also finds that incendiary phrase a great jumping-off point for discussing how her family have chosen to help everyone live together in harmony, feeling safe and loved.

Among the very valuable advice in Beth’s essay is the caution that everyone absolutely must get enough sleep. I have visited with Beth’s family, and saw exactly what Beth describes in her essay. Her daughter gets good sleep and Beth keeps a monitor turned on so that she can hear the moment her daughter is awake and ready for Beth to come help her get her day started. Being well-rested is crucial. I have watched other Autistics completely fall apart and end up hospitalized simply because they weren’t getting sufficient sleep to be able to self-regulate.

An important side note about health issues such as getting sufficient sleep, or addressing digestive troubles like heartburn, IBS, etc: you will run into doctors who try to tell you that it is hopeless to address your Autistic child’s physical issues and that you should just give up. I know because not only do so many parents tell me that they have had to fight with doctors in order to get their child’s health needs addressed, but I have had to fight with doctors as well to get my own needs met, despite being a fairly articulate adult. There is a bias in the medical community that you will find yourself up against, a bias that says that Autistics just suffer, we just cry, we just behave strangely for no reason, and we’re all like that and there’s nothing anyone can do about it.

You have never given up on your child.  Don’t let the doctor give up on your child either!

If your child needs help with sleep, pardon the pun but don’t rest until you get that help for them. If you suspect your child is experiencing heartburn, food allergies, digestive irritation, etc. keep the doctor on task until the problem is investigated and solved. A lot of aggressive behavior happens because it is impossible to self-regulate when exhausted or in pain.

I’d like to round this collection of information out with four articles by four different authors, previously published on Thinking Person’s Guide to Autism (TPGA). I consider TPGA a great resource for all sorts of needs, and the articles are written by a mix of parents, caring professionals, and Autistic adults, providing a rich and full view of Autistics and our needs throughout the lifespan.

In Autistic Insights on Meltdowns, Aggression, and Self-Injury, Brent White and Lindsey Anderson talk about important guidelines including staying calm, protecting the Autistic person who is in crisis, offering options, and slowing everything down. When someone else is being loud or aggressive it can be hard to stay calm, but it is so crucial. If you allow yourself to get anxious and emotional, too, it will amplify what is going on with your Autistic family member. If you can remain calm and slow and steady, you will be offering yourself as a rock of stability and safety that will help your child to bring themselves out of their stressful state of being more easily.

In Understanding Autism, Aggression, and Self-Injury: Medical Approaches and Best Support Practices, Dr, Clarissa Kripke offers sound advice based on her experience as a doctor and as a mother of an Autistic teen. You’re already familiar with much of her advice by now: look for medical causes for behavior changes, foster communication, help keep caregivers well-rested and supported with respite as needed. Something that is implied in Dr. Kripke’s essay but stated explicitly in Beth’s earlier essays is that respite is not just some kind of medical remedy meant to make life easier for a parent or other caregiver. Everyone in the family benefits from taking breaks from each other.  Your Autistic family members especially benefit from time apart.

So many Autistic people are “emotional sponges,” as Shannon Des Roches Rosa puts it. That phrase really resonates with me because I have used those exact words to describe myself, even long before I was informed that I am Autistic. Parenting is highly focused work that takes a lot out of a person. Parents—parents of all children with all neurologies—need to take breaks and have “me time” to rejuvenate and return to parenting refreshed and rested. But we Autistic emotional sponges also need time away from the intense emotional energies of others. Spending time with other family members besides parents, or other trusted adults, can be restful and renewing for Autistic children as well.

I also know families with more than one child who take time regularly to spend one-on-one time with each of their children, away from the other children in the family. This special fun time focused just one one child is very important, too. Brothers and sisters need breaks from each other.  Parents need breaks away from their partners, if they have them. Make sure everyone in your family is getting their needs met as far as special time with individual family members, “me time,” to be completely self-focused, and restful break time from the entire family. Togetherness helps a family grow in love, but sometimes too much togetherness can stunt that growth or even shatter a family apart.

Like previous essays mentioned in this essay, Dr. Kripke’s essay also talks about changing things in the environment that are triggering meltdowns, but adds advice about the differences between meltdowns and tantrums and suggestions about how to approach the two differently. A meltdown absolutely requires support and never punishment. Punishment is inappropriate for a tantrum as well, but the support looks completely different because a tantrum is an attempt to affect the behavior of others while a meltdown is an expression of complete overwhelm and is not driven by intentions of any sort.

The second half of Dr. Kripke’s essay is a marvelous capsule guide for surviving meltdowns.  You really must read this! Dr. Kripke offers concrete step-by-step instructions for developing and implementing an action plan to cope with aggressiveness that comes from overwhelming anxiety.  I can’t even begin to do it justice in a short summary. It is simply required reading for anyone who loves an Autistic person.  I can’t begin to express how valuable Dr. Kripke’s words are.

The last two essays came from a workshop on Autistic aggression and meltdowns and the third essay I recommend is from the same workshop as well. Shannon Des Roches Rosa provided an overview of the workshop's topics after introducing the three other speakers, and that overview is a valuable short essay in its own right—including some great checklists of things to look at in the environment that may be difficult for Autistic people to cope with. Many things on the list are obvious to us Autistics, but maybe not so obvious to the non-autistic people in our lives. Things like perfumes or flickering lights may be nearly invisible to most people but can be overwhelming sensory assaults for us.

The last essay I want to leave you with is by Brenda Rothman and is titled Adult Responses to Autistic Children Lead to Escalation or Calm. Brenda Rothman is exactly right when she decribes how adult response choices can either help keep a child calm, or escalate that child into meltdown. I can tell you that this is not just true with children: As an adult, people’s responses to my anxiety have thrown me headlong into full-blown meltdown, while calm responses have pulled me out of meltdown even after I passed the point of no return.

Do not underestimate the effect that your attitude and words have on your child.  I understand that if your child hits you and Brenda and I tell you that your response is what sets your child going even harder, or helps your child reel it back in and calm down, you might feel like we are “blaming the victim”—but Brenda explains so well in her essay why that is exactly the wrong way to approach Autistic aggression. You are not a victim. Your child’s aggression is not a personal attack.

Rothman reminds her readers that their children are not trying to hurt them. The children are disoriented, anxious, and suffering. If you think of yourself as a victim of your child, you will not be able to foster the sort of calm response your child needs to help them regain self-regulation and calm.

Brenda Rothman offers some excellent advice for how to stay calm, how to respond to your child in distress, and how to address aggression with grace and love. You don’t need ABA for your child’s aggression. In fact, ABA is only likely to “work” in these instances by increasing but suppressing your child’s level of trauma and suffering. Whatever caused your child to suffer so much that they lost control is still causing your child to suffer, but if the ABA has done what it set out to do, your child has lost the only channel of communication available to them for expressing their pain and suffering in hopes of getting help with their distress.

Don’t take away your child’s voice; take away their suffering. ABA is a cruel response to aggressive behavior. Meet that behavior with love, calm, support, and an investigative search for the source of your child’s struggle instead. Learn why your child is getting so stressed out that they are frightening the people around them, and help make your child’s life calmer, safer, and happier. That is what you were hoping ABA would do, but I am here to tell you that ABA cannot do that. It is your role as a loving parent and you don’t need a behaviorist. You just need the love and compassion you already have for your beautiful child. Dealing with aggression really is a situation in life where love conquers all. Go forth now and vanquish suffering with curiosity, compassion, and calmness.

Tuesday, April 4, 2017

Eleven Ways You Can Make Your Autistic Child's Life Easier

Shannon Des Roches Rosa

Loving your autistic child with all your heart is a wonderful, precious experience. If you’re not autistic yourself, though, even the purest love can't always help you intuit how being autistic affects your child’s body, their senses, and how they interact with the world.

You don't want to inadvertently make your child's life harder than it has to be, so please consider the advice below—advice I’ve gleaned about autistic experiences, gathered during thirteen years of listening to autistic people, professionals, and parents. Some of these factors are common knowledge in autism communities and circles, but others are really not talked about enough, and every last one bears repeating.

Photo © Shannon Des Roches Rosa
[image: happy white boy with brown hair
singing, next to a large mossy boulder.]
If you want to do right by your autistic kid (or any autistic person, really), then please do your best to understand and respect these eleven factors about being autistic:

1) Processing Time: Almost every autistic person I know has their own rhythm and speed at which they process information. In my son's case, this means giving him a few beats to respond, rather than impatiently assuming he didn't understand what was said.

Other processing scenarios include relying on captioning for fully comprehending videos or movies—even for those who can hear—or needing to record and re-listen to lectures. Disregarding processing needs can lead to autistic people having their abilities or comprehension grossly underestimated.

2) Visual and Auditory Processing: Autistic people often process visual and audio input faster, or with greater intensity. Sometimes this means "super hearing," as in being able to detect—and act on—parents' whisperings about hidden cookies, from several rooms away.

Sometimes this means overhead lights flicker distractingly or painfully in ways non-autistic people don't notice. And sometimes, kids who can't screen out overwhelming sights or sounds on their own end up doing poorly or even melting down in classroom or other settings, because they're using all their energy to cope with torrential sensory input—instead of learning, or being able to communicate, or picking up on social cues and exchanges.

Providing noise-canceling headphones, using glasses with colored lenses, and using non-fluorescent lights are just a few options to make home and classroom environments more autistic-friendly.

3) Sensitivity to Barometric Pressure: I don't need to consult or my Dark Sky app to know if rain is approaching, because my son will usually have already let me know that his head hurts due to the barometric pressure change. Many of my autistic friends have also reported being more sensitive to barometric pressure than their non-autistic peers; in some cases, the pressure change can even trigger migraines. So if your child gets distressed any time a storm comes in, consider that they may be in pain rather than scared, and take good care of them accordingly.

4) Undiagnosed Heartburn (or Other Medical Conditions): If your child has a hard time going to or staying asleep, or is going through an agitated patch in general, consider that they may have heartburn. Heartburn hurts like hell, gets worse upon lying down—and is usually easy to treat with over-the-counter meds (after a consultation with a doctor, of course).

Treating my son's heartburn has genuinely improved his ability to fall asleep, as well as his quality of life—and is but one example of how what is dismissed or assumed to be autistic "behavior" can actually be a reaction to an undiagnosed medical condition.

5) Stimming: Flapping hands, flicking a straw, chewing on a silicone tube, fiddling with hair—these are all examples of the kinds of "stimming" that can help autistic kids entertain themselves, regulate themselves, or cope with being overwhelmed—and which serve beneficial and legitimate purposes. But since stims can be perceived as odd or undesirable by non-autistic people, great effort is often put into blocking or "extinguishing" such stims (and not just in autistic kids, by the way—behavioral suppression is now also being used for kids with ADHD.)

Healthy or self-regulating stimming needs to be understood and accepted, and is different from repetitive self-injury, distress, or aggression.

6) Echolalia: Autistic kids will often repeat phrases, words, or scripts. Echolalia can be functional communication, similar to the way a subset of Gen X-ers considers lines from the movie Caddyshack perfectly acceptable responses during casual conversation. Echolalia can also be a form of verbal stimming: it can be reassuring and self-soothing to repeat phrases either to one's self, or in a call-and-response fashion with other people. Yet parents, teachers, and therapists often try to squelch or redirect autistic echolalia. If this attempted squelching happens, just say no. And then say it again!

7) A Serious Need for Chill Time: Autistic people get overwhelmed by the world. So when your kid comes home from school, an outing, or even after spending time with you, be sure to give them all the downtime they need. Give them space to process,  reintegrate themselves, stim, watch favorite videos—however they indicate to you that they best decompress.

This is especially crucial for our community's kids, as autistic kids tend to get highly scheduled, with therapies and other intensively socially activities that require more energy than is expected of non-autistic peers. Think about it: no kid whose energy reserves are completely drained is going to be at their best.

8) Face Blindness, or Prosopagnosia: Face blindness is a real thing for many autistic people, though its degree can vary. (Agnosia in general is an autistic thing, actually—difficulty differentiating between shapes, smells, buildings, individual cats.)

Try to help your child compensate: Teach them to recognize people by traits besides faces, and be aware of situations that may stress them out, like meeting up with friends or acquaintances, or recognizing teachers or aides. Help them come up with a strategy that works best for friends or family to approach them, like having the other person always say, “Hey, it’s me, [Name].”

9) Sensitivity to Tone of Voice: Autistic kids can be incredibly sensitive to other people's emotions, sometimes absorbing and even magnifying them. This means that keeping your tone of voice neutral or positive when speaking to your autistic child is a worthwhile effort. What you many consider a "firm" kind voice may be perceived as hurtful and angry by an autistic person who vibrates at a high emotional frequency, so do your best to practice a calm, comforting communication style with your child.

10) Simplify Their Space: People who get easily overwhelmed by visual and audio input, experience agnosia, and need processing and chill time often appreciate bedroom and classroom environments that are soothingly spare and uncluttered.

If your child has a difficult time creating or tending such a space on their own due to common autistic co-occuring attention, executive functioning, or other factors, then do your best to help them organize and maintain these spaces as they prefer.

11) Need for Respite: If your autistic child is indeed an emotional sponge, they will need period breaks from the primary emotion emitters in their lives—their family members. Do your best to make sure they get those breaks, however you can and however they desire—such as giving your child space, taking them for silent car rides, or having them spend time with a respite worker or other trusted, appreciated person who is not you. You'll both benefit.

Every autistic person is unique, which means these eleven factors may not ring true for every autistic person, even though these factors are all incredibly common. This list is also not meant to be comprehensive (please, add your own considerations in the comments).

Consider this a starting point, a check list, a mini-guide for parents to think about autistic matters and perspectives they may not have known about, and which may help them and their kids live the Best Lives Possible.


A version of this article was previously published at

Monday, April 3, 2017

When You Are a Personal Assistant, and a Disabled Person Is Your Boss

Amanda Forest Vivian

I am a direct support worker, although there are many words for what I do. To people not involved in Disability World, I often describe my job by saying, "I take care of someone who is disabled." I don't really like to say this, but not everyone is coming from the same place and understands the same language.

My job title is Personal Assistant, which I like. I think direct support work should be viewed as assisting a person who is your boss, not taking care of someone passive.

It's important to keep in mind that there isn't one way to be a support worker. At one point, I was steeped in a certain view of support which was that it was totally inappropriate for support workers and their bosses to be close friends. A worker should just be like a robot that brushes your teeth, puts your shoes on, and transfers you from stair lift to wheelchair. This concept not only was alienating to me, but it just didn't fit with how my jobs were. Sometimes a client obviously saw me as a friend and I felt the same, and it would be weird to insist otherwise. People have different preferences about how professional a relationship they want to have with their staff; and for some people, it just makes sense that if you spend so much time with someone, you will be genuine friends. Other people don't want that. Either way, it should be based on the preferences of the client and the worker, not an abstract idea of what their relationship should be.

My boss is a twentysomething severely disabled girl who I consider my best friend and sister. We have spent most of our time together for more than four years, and to me it just seems appropriate to use these words. Several years ago I would have thought this was politically incorrect, but oh well—here we are!

However, despite feeling like Anna is my sister, I still see her as my boss first when I am on the clock. A friend or family relationship with a boss should never supersede the fact that they are your boss. Here are what I see as some common pitfalls of support work, where workers don't view the relationship appropriately:

1. Acting like a friend/family member when the client doesn't see you that way. You are an assistant, unless the client shows or tells you that they want a more personal relationship.

2. Acting like a friend/family member when you don't see yourself that way. Once when I was talking about this on Facebook, someone described how people they knew had staff who presented as friends and who the client saw as friends, and how hurtful it was for the client when the "friends" would suddenly disappear from their life. (I don't remember who said this but if you did, stand up and be credited!)

A friend comes to your birthday party even if they are not scheduled to work for you. A friend doesn't abruptly disappear if they leave their job—they tell you they're leaving and still make time to see you! Staff I know who are actually friends with their client still visit and meet up with them if they leave their job, because they enjoy their company. It's fine not to want an extra-work relationship, but you are not friends if you don't treat your client like you treat your other friends.

3. Using the word 'friend' as a euphemism. "I'm Andre's new friend! We hang out from 8 am to 8 pm on Mondays, Tuesdays, and Wednesdays!" Well, that's a pretty strict schedule for two friends to "hang out," especially if they just met each other. Would the world implode if you said, "I'm Andre's new aide and these are the times I work for him?" It's not shameful that Andre has a support worker and besides, it's obvious you work for him, so why not just say it instead of talking around it?

This also leads to some truly ridiculous sentences. I once heard a new staff say to her client, "Do you need help in the bathroom? I wouldn't be a very nice friend if I forgot to ask that!" It would be a totally normal question if she said "good staff person" instead of "nice friend" but as it is—well, that's a very weird definition of friendship!

4. Telling your boss how to live their life. If I never hear another 30-year-old staff telling their 60-year-old client what they should be talking about, doing, buying, or eating, it will be too soon. It's particularly striking with the age discrepancy, but it's never appropriate. Being a direct support worker is a position of service, not authority. If you were a personal assistant to a businessman, a politician, or a Lady Who Lunches, you'd help them do what they wanted to do. Being a PA to a disabled person is no different.

I'll confess, in my job I sometimes break this rule. My boss Anna loves to play with leaves, so she rips them off plants; and she also will knock over any glasses or cups that are near her (I don't know why). I stop her from doing these things even though it may not be in compliance with my idea of how a PA should act. I may not be able to make an argument for this exception, but it's just common sense. People have a right not to get their potted plants yanked over or their glasses broken, and Anna can go more places if she doesn't do these things.

5. Just doing whatever you feel like. Some PAs really don't get that even if someone is developmentally disabled, or especially if they're nonverbal, they're still your boss. Just because they can't say "I want to go to a movie" doesn't mean it's okay to take them with you when you go to IKEA and make them sit around while you pick out furniture for yourself. It might be okay to meet up with a friend of yours if you actually think your boss would like them and you're including them in the conversation, but it sucks to just haul your boss around like they are your extra purse while you hang out with other people and ignore them. It's nonsense. This is the ice cream of jobs, if you get along with your boss—all you have to do is spend time with someone cool, and help them with things. This is a job? Doing it properly is the easiest thing ever so I don't understand why someone would be like, "Wait, this job is still too much like a job, I'm going to do my grocery shopping instead of working."

I mean, aside from how stupid this is, it's pretty evil. How would you feel if you spent your days being treated like an object who is ignored and whose preferences and opinions don't matter? If your boss doesn't seem to mind, this is probably a sign of how fucked up their life has been so far—a pattern you are continuing.

Obviously if you work for someone like my boss who doesn't really have a reliable communication system, the person can't just say what they want to do. So in focusing on their wishes, you have to rely on activities you know they like; talk to them about activities and see if they look happy and interested; and try introducing them to new activities to see if they like it.

I used to have to struggle to get my boss out of bed to do things. For whatever reason, this doesn't really happen anymore. I don't know exactly why—because we know each other better now? Because we are older? Because she was just out of school and getting used to a more unstructured adult life? Even though I knew she would be happier if she went out and had adventures, I had mixed feelings about pushing her to get up when she didn't seem to want to. But now, if she's not sick, she seems ready to get up and go somewhere.

7. Not respecting your boss's privacy. If you don't understand why you shouldn't tell your boss's friends and acquaintances about bathroom things, then I don't know what to tell you. Would you like it if you used a catheter and someone told everyone about it while you were sitting there unable to stop them? Somehow, some people get the impression that disabled people's private business doesn't belong to them, it belongs to the person who helps them with it. It doesn't. Even if you literally have to take them to change their catheter bag right now, present company doesn't need you to describe exactly why you are leaving. It's rude.

Privacy applies to all subjects of course. One time, thinking it was funny, a staff told me her client had a crush on me. The client was someone I saw regularly and was friendly with. Come on—would you ever want someone to tell a friendly acquaintance that you had a crush on them, potentially making your interactions really awkward? Of course not. We all might have to contend with this from bullies and embarrassing family members, but if it's your job to support someone in the community, then you shouldn't actively cause problems in their social life.

8. Hogging your boss. This is a self-directed complaint. I am always hovering around Anna because a) she's my favorite, and b) I want to be around if she needs help. In groups, I'm trying to learn to sit apart from her and give her time to be alone or relate with other people, while still being aware of things she might need.

End of list.

I also have to register that unlike many other bosses, the person I'm calling your boss may not be able to fire you. They should be able to, but if they aren't making the direct choice, the family member, agency, or program that is employing you may not care about their opinion. This unjust circumstance doesn't mean that you shouldn't treat your client as your boss as much as possible. Neither does the fact that they may not be able to express their opinion, either because of their disability or because you're the best of a bad bunch and they don't want to end up with someone worse.

I feel like most of my opinions come from two principles: 1) treat your boss like any other boss; 2) treat your boss as you would want to be treated. I kept finding myself writing, "How would you feel if...?" Many times, support workers do not put themselves in their boss's shoes.

Anyway, like I said this is the ice cream of jobs, so just have fun, pay attention, and be considerate. I feel lucky that instead of sitting at a desk, I get to explore life at the right hand—or rather the left hand—of the coolest person I know.

[Image is a photo of Anna walking along a boardwalk and 
Amanda walking behind her,
holding her left hand to stabilize her.
I also want to link to Mel Baggs's staff tag and to Dave Hingsburger's blog. I'm really glad to have been reading them for most of my working life, so that even if people around me didn't encourage me to think about all these things, I still knew I should.