27 July 2011

My Thoughts to the Adult Services Subcommittee

I took liberal inspiration from ASAN Greater Boston's June 25 Focus Group on Autism and Ethics and the feedback and suggestions received there, as well as Winchester-based advocate Catherine Boyle's shared values statement, a collaborative project among various members of the autism community to find shared values in the midst of the contention and animosity that often surround important issues. I did not, however, refer to any documents from the focus group, or Catherine's document, when writing the following, and any plagiarism of phrases is incidental and unintentional, and duly credited to potential original authors here.


- Autistic people have the right to be treated with respect, presumed competent, included in discussions about policies or practices that affect them (both with public and private organizations and decision-making bodies), and considered valuable members of society.

- Autistic people, especially those who do not speak or have limited speech abilities, have the right to receive access to and support in learning how to use alternative means of communication other than speech, such as American Sign Language, picture boards, keyboarding, or other augmentative/alternative communication devices.

- Autistic people have the right to receive services and supports that they need or request, or that family members or guardians request on their behalf. They should never be excluded from or denied eligibity for receiving services or supports based on IQ, co-occurring conditions such as mental illness or other disabilities, or age. Autistic people have this right on the basis of autism alone.

- Autistic people have the right to be included in discussions or meetings that affect them personally, including IEP meetings while in the public school system. They have an important and valuable voice in shaping their plan of support, services, or interventions.

- Autistic people have the right to access to healthcare services with appropriate accommodations throughout the process of seeking medical services, communicating with medical professionals, and making informed decisions about medical procedures.

- Autistic people have the right to receive appropriate and necessary supported living services, as well as any necessary financial assistance in obtaining appropriate housing.

- Autistic people have the right to gainful and meaningful employment commensurate with their abilities, skills, and interests; appropriate supported employment services and resources throughout the hiring process and on the job; and access to training about self-advocacy skills in the workplace. Wherever possible, employers and managers should be provided with education about autism and other disabilities so that they can best accommodate their employees.

- Autistic people have the right to access community resources where they live, including appropriate and affordable transportation options, local programs or events, community education programs, and autism and disability organizations.

- Autistic people in the public school system, in private schools, or in post-secondary institutions have the right to appropriate and necessary supports and services required for academic functioning, adaptive functioning, and social functioning. They have the right to an appropriate, individualized transition plan from the school system to adulthood, and to be included in discussions shaping these plans for support.

- Autistic people living in residential institutions have the right to appropriate advocacy resources, including access to training about self-advocacy skills; appropriate and necessary services and supports, including positive behavioral supports for maladaptive behaviors; legal counsel and recourse in regards to guardianship and its terms; and appropriate assessments by qualified professionals with expertise in autism and developmental disabilities.

- Autistic people interacting with first responders, law enforcement, the courts, or other government agencies have the right to an advocate with expertise on autism and developmental disabilities, appropriate accommodations for communication and interaction wherever possible, and appropriate assessments by qualified professionals with expertise in autism and developmental disabilities. First responders, law enforcement officers, court officials, and corrections officers should be trained in recognizing characteristics of autism, appropriate means of communication and interaction with Autistic people, and how to accommodate sensory processing challenges on a situational basis.

22 July 2011

Level III Aversives and the Judge Rotenberg Center

Today, I testified at the Massachusetts Department of Developmental Services statutorily mandated hearing on proposed amendments to regulations regarding minimum standards for the treatment of people with developmental disabilities, including intellectual/cognitive disabilities. The marathon hearing was held at the McCormack Building in downtown Boston, beside the State House, and went all the way from ten in the morning until four in the afternoon. Commissioner Elin Howe of the DDS presided over the hearing, and seemed to be very pleased to see me; Commissioner Howe is one of the members of the Autism Commission, and I have attended almost all of their meetings. (I believe she has also attended some of the Adult Services Subcommittee meetings.)

When I arrived, there were already over twenty people present, if not much closer to thirty, and the numbers grew by the minute, with more and more people crowding into the room I usually associate with the Autism Commission meetings. Outside the conference room, Commissioner Howe greeted me and asked me whether I intended to testify. "I've been thinking about it all week, but I haven't prepared anything," I said.

"That's fine," said Commissioner Howe, directing me to a table between the two entrances to the room, "but you can sign in over there, and you can always change your mind later."

"Okay, thanks," I said, and headed to the table, where I gave the ladies my name. I noticed that there were already several names listed on the sheets, although I didn't know at the time that out of the well over eighty people who attended, maybe around forty, perhaps a bit closer to fifty, would give oral testimony.

After signing in on the sheet, I went inside and took a seat to the right side of the room, between one of the CART accessible communication providers and one of the sign language interpreters. I sat quietly, eating my croissant from the Dunkin Donuts near the State House, careful not to let crumbs all over my suit or the floor.

When Commissioner Howe gave her opening remarks, she introduced the purpose of the hearing and described the proposed amendments. The proposed amendments would ban the use of Level III aversives, which include pinching, hitting, deprivation of food, and electric shocks. (Nevertheless, it does not prohibit the use of these aversive interventions for students who will have had an existing court-approved intervention plan including Level III aversives by 1 September 2011.) This was the second of two hearings. (The first was on Wednesday, and had been held in Worcester.)

Immediately following her remarks, she announced that attendees who had indicated they wished to testify would be called in order listed on the sign-in sheets. The first person to give testimony was Henry Clark, a lawyer representing the parents association of the Judge Rotenberg Center, a residential and day institution for the developmentally disabled and behaviorally challenged in Canton, Massachusetts. The JRC, in fact, is at the heart of the matter. The JRC has been open since at least 1977, where it was originally called the Behavior Research Institute until a 1986 ruling by a Judge Rotenberg allowing the use of electrical shock as a therapy. Afterward, it was renamed in honor of this judge.

For well over twenty years, individual legislators in the Massachusetts Legislature have tried to pass bills to completely ban aversive shock therapy; however, each time, they are met with the millions of dollars the JRC has in lawyers and lobbying power, and, the sweeping majority of legislators knowing little about psychology or developmentally disabled people, the affected "expertise" of the employees and staff of the JRC. Intimidated by the endless train of JRC staff and the parents of JRC students, the legislature has repeatedly failed to pass these bills. More recently, the JRC has gained a powerful ally in Representative Jeffrey Sánchez, whose nephew is an Autistic young man in his twenties with severe maladaptive behavioral challenges as well as severe spatial agrosia (inability to recognize his own body's location in space and its proximity to other objects and people.) Sánchez is an ardent, absolute supporter of the JRC who refuses to hear anyone who even partially deviates from his opinion that nothing should be done to restrict or regulate further the use of aversives.

Starting with Senator Brian Joyce's bills filed in the 2009-2010 legislative session that would compromise on the issue of aversives (establishing stricter external oversight and regulations of the use of the type of aversive shock therapy that the JRC uses, as well as its alleged deprivation of food [up to three-quarters of daily nutrition] and forcing inmates to engage in the behaviors for which they are then punished), it seemed that such a compromise might actually make progress in the legislature. It did in fact progress beyond any previous proposed ban before dying in the House Ways and Means Committee, arguably the most powerful of any of the legislative committees. (Any bill requiring appropriation of funds must be reported favorably by House Ways and Means.)

Senator Joyce's bills were re-filed in the current (2011-2012) legislative session as Senate Bills 49, 50, and 51, along with Senator Tom Sannicandro's proposed complete ban on these types of aversives as House Bill 77. These bills are scheduled for a hearing at the State House on this coming Tuesday, and based on the propagandizing evident at today's regulatory hearing, the JRC will appear in full force, shepherding dozens of staff members before the Joint Committee on Children, Families, and Persons with Disabilities to do what they've always been successful in doing -- intimidate the legislature into complying with their agenda. Again.

Mr. Clark's testimony would mirror the testimony of the close to thirty-something (if not more) JRC administrators and other employees who appeared today, and the two or three parents of JRC inmates. He and his cohorts (some of whom rather amusingly read prepared remarks referencing the four pieces of proposed legislation, which were not the topic of today's hearing [two entirely different parts of government]) made several arguments, all of which can be refuted by facts and evidence:

Firstly, the JRC supporters argued that level III aversives, such as their GED skin-shock device, can be "a life-saving intervention" in the cases of individuals with maladaptive behavioral problems like severe head-banging, skin-picking, hitting or punching themselves, biting others, spitting at others, or attacking others. Perhaps in a true emergency, when used solely as a temporary measure, in the most severe cases of self-injurious or destructive behavior that threatens imminent, life-threatening harm to self or others, such aversives like electric shocks may have some level of efficacy. If so, why should these people be opposed to allowing such interventions, under the strictest possible supervision and regulation?

The Department of Developmental Services is statutorily charged with upholding professional standards and establishing policies to protect some of the most vulnerable, at-risk people in the Commonwealth -- people with intellectual/cognitive or developmental disabilities. In that capacity, it must protect the rights of disabled people, including the rights against inhumane, cruel, or abusive treatment, and the right to as much self-direction in any intervention or support planning as is possible. If the DDS is also supposed to ensure that its population is receiving appropriate and necessary services and supports, it has a moral and legal responsibility to ensure the wellbeing and dignity of these people is protected as well as a responsibility to create regulations applicable both to state agencies and private providers, like the JRC, to this end. The purpose of doing that is to promote improving the quality of life for disabled people -- by including them inasmuch as possible in the process, and by preventing potential opportunities for exploitation, abuse, neglect, or well-intentioned harm.

The proposed regulations by the DDS allow individuals who currently receive court-approved level III aversives to continue to receive that treatment. In that respect, the JRC will not be prevented from applying the GED to the inmates whom are already subjected to it. It does, however, prospectively ban any future approval of level III aversives. You would think that this would allow the JRC to provide for alternative means of behavioral intervention and support and to seek alternative remedies; however, the JRC's cronies make another fallacious argument in response to this speculation.

The JRC's second wrong argument is that because positive behavioral interventions failed with these individuals, the only possibly effective alternative to level III aversives is heavy dosages of psychotropic medications that will result in disabled individuals being in "a catatonic state," as one of its staff members described in oral testimony today. This is not true. Despite the JRC's efforts to paint opponents of level III aversives as promoters of overmedication, many people who ardently -- and rightfully -- oppose the use of these kinds of aversives do not support the arbitrary and ineffective prescription of psychiatric medications to any or all developmentally or intellectually/cognitively disabled people. For some people, medications may be effective in the long-term and in the short-term; for others, such medications may be effective and necessary as a temporary short-term measure; and for still others, these medications may be unnecessary and should be not prescribed.

There are other institutions that care for individuals with the most severe, self-injurious or destructive behaviors without using chemical restraints or shock aversive therapy, and whose residents have good outcomes. The JRC does not provide transitional planning for its inmates to prepare for leaving the JRC and returning to the community. Instead, it advocates that its inmates belong at the JRC and must be given shock aversive therapy for the rest of their lives. There is a silent threat that if the JRC is ever forced to close its doors, its inmates will be returned to their parents' doorsteps without any behavioral supports and without other options.

This is entirely unfounded and untrue.

We know that aversives, consistent with the theory of Pavlovian conditioning, address only the actual maladaptive behaviors. They do not address the root causes of why these individuals engage in these harmful behaviors. Take a weed, for instance. If you pull a weed's leaves, the roots remain. The weed may appear to be gone for awhile, but check back in a few days or weeks, and voila! It's back. If you don't take the time to search for the roots and remove them, you will not kill the weed. Likewise, if you do not address the causes of maladaptive behavior -- sensory overload, inability to communicate, etcetera. -- you do not address the real problem. It's the tip of the iceberg, so to speak. Aversives cannot do that. Aversives cannot remove offending sensory stimuli, and aversives cannot provide people with a means of expressive communication, be that verbalizing speech or otherwise. All aversives can do is induce fear and pain in a person who may or may not be able to communicate that terror.

We also know from psychology that an aversive, once removed, will cease to have its effect. Given sufficient time, the mental association of the aversive with the undesirable behavior will fade, and the frequency of the undesirable behavior will actually return. This alone should be enough to refute the arguments in favor of the efficacy of aversive therapy. As a long term measure, it has no effect and remains a band-aid over a bullet wound at best. At best.

Thirdly, Mr. Clark argued that were the DDS to implement these new amendments to its regulations regarding aversives, the DDS would deprive the families of disabled people of their civil rights. Yes, that's right. Clark said "civil rights." Excuse me, but are we back in the 1950s again, or perhaps earlier, the 1880s, where disabled people only exist as extensions of their families, and where their parents or siblings alone have the right to speak for them, putting words in their mouths about their wants and needs? Oh that's right. As another JRC employee testified today, "Adopting these regulations would be a step backward into the Dark Ages." Wrong again. If the DDS does not implement these regulations, it will be a civil rights violation. It will be a violation of the civil rights of every disabled person in Massachusetts.

According to Clark, whenever the JRC or an individual's parents wish to include level III aversives in a behavioral intervention plan, an adversarial hearing is held in which a judge makes the determination whether or not to permit level III aversives. Aside from the obvious accusations of ties between the court that makes those decisions and the JRC itself, Clark argues that the civil rights violation would be violating the rights of the parents to decide for their children. Actually, our courts have upheld the rights of parents to make decisions for their children without state intervention except when there is a compelling interest on the part of the State to act in the interest of the child's benefit, such as in cases of abuse. More recently, in 2009, Minnesota Judge John Rodenberg (whose name, ironically, is etymologically related to that of Judge Rotenberg for whom the JRC is named) ruled that thirteen year old Daniel Hauser's parents could not choose to deny their son necessary chemotherapy in favor of alternative treatments; Daniel was provided with child protective services.

Whenever a child's rights are in danger, and in particular, whenever a disabled child's rights are in danger (or a disabled adult's rights!), our government does have a moral and legal obligation to prevent the infringement of that individual's rights. All people have certain rights, including the right to be free from fear of inhumane or cruel treatment. You would think that our most vulnerable citizens would be protected by the government, if anyone. But instead, what has happened over the last few decades is an appalling example of bowing obsequiously to the special interests of the JRC (and the JRC alone -- as it is the only institution in the entire country that uses electric shock aversives.) If the government does not intervene to protect these essential rights, they allow for the rights of any disabled person to be trumped by the agendas of others. Disabled people have civil rights too, and those rights must be not merely recognized and paid lip service, but must also be upheld and protected.

I made these points during my brief testimony, emphasizing the egregious civil rights violations against disabled people by the continued use of shock aversives and other level III aversives, in direct contradiction (or perhaps subversion of) to Clark's argument.

That was around eleven in the morning. I was one of the first ten people to give testimony.

By the time two in the afternoon rolled around, the vast majority of people giving testimony were staff from the JRC. I couldn't help but wonder at one point who was watching the JRC's inmates if their entire staff were at this hearing. I was told by another attendee that Wednesday's hearing had consisted of three-fourths of JRC staff testifying. It seemed like a similar ratio today, maybe a little closer to two-thirds than three-fourths. A few self-advocates spoke, as did a few parents of disabled children who have had such self-injurious and destructive behaviors, but who sought alternative interventions to aversives that were ultimately successful. Stephen Schwartz, a lawyer representing some parents and former inmates of the JRC, also gave testimony in support of the proposed amendments to the regulations. He noted later that he had, early in his career, mistakenly recommended that a young man be sent to the JRC and receive shock aversives; however, Mr. Schwartz also shared that one parent whom he represents wanted the child removed from the JRC, and the JRC sought an injunction preventing the parent from doing so. So much for the civil rights of parents in making decisions, Mr. Clark.

One of the clinicians for the JRC almost broke down during her testimony. "We are called monsters," she said, speaking of herself and other JRC clinicians. "We go places and there are people screaming at us, swearing at us. They throw things at us. We go to conferences and we are called monsters." Well, however wrong it is for JRC opponents to scream and swear at the JRC's staff (and it certainly is wrong for anyone to do that to anyone else, no matter what they believe or do), if you are willing, under the guise of doing good, and when there is scientific and empirical evidence that supports the use of non-painful interventions to reduce and eliminate self-injurious and destructive behaviors, to subject disabled people to ELECTRICAL SHOCKS, you are a monster.

20 July 2011

Friendship

In response to a fellow Autistic friend's status on Facebook about the meaning of "friend" or "friendship," I shared my litmus test for friendship. Why do I have such a litmus test? (And you can read it below.) Because I like order, visual and explicit means of understanding abstract concepts, and because there are infinite misunderstands of friends and friendships in the world today.

With the advent of social media like Facebook, MySpace, Twitter, Gather, and such sites, "adding friends" or "friending" complete strangers has become a normal practice. Probably about 80% or more of my currently 700-odd Facebook "friends" have at least 300 "friends" on their accounts. But about 95% of these people aren't really friends. Why? Because there is no empathetic, trusting, and accepting relationship on the deep, emotional level with the vast majority of them. And yes, we Autistics are not only capable of empathy, but also of having varied emotions, including mutual and reciprocal ones.

In fact, let's take a look at the Iberian Spanish language to help us understand why this is so important. The word "friend" is translated to "amigo" (or "amiga," in the case of a female subject), from the noun "amistad," meaning friendship. It ultimately derives from the Late Latin noun "amicus," meaning a friend or an ally, which itself derives from the Latin verb "amare," which means "to love." Thus, a friend is someone whom you love. (Clearly, this is not meant in the "romantic" or "sexual" type of love, but more in line with the Greek concept of "agape," or complete, selfless love that takes its form in actions.)

On the other hand, there is the word "conocido," (or "conocida," if female) which is the participle form of the verb "conocer." As any good Spanish instructor will teach you, conocer, defined in the dictionary as "to know," is a different verb with highly distinct meanings from "saber," which also means "to know." Conocer is the kind of "by heart" knowledge, or knowledge by way of familiarity (a word that is related to the English "family"), whereas saber is knowledge in terms of cold, hard facts -- where someone or something is, when someone was born, when something happened, what something costs to buy. Used in the simple past tense (the preterite, for grammarians out there), conocer will be translated as "met" or "became acquainted with" in reference to meeting another person. Conocido, conocer's participle, can be used in a compound verb or as a noun. As a noun, it is usually translated as "acquaintance." A strict, literal translation, based on the preterite use of the verb and its normal meaning, would be "one with whom one is familiar."

You don't know a conocido half as well as you know an amigo. You may know this person by name (or face, if not face-blind) or hair color or place where he or she works or goes to class, but you don't know anything about this person's past, personal life, fears, hopes, or dreams. You might as well be reading a police wanted poster; you'd get more information out of such a document than you would from mere conocimiento (the abstract noun formed from the same verb), or acquaintanceship.

It's very easy for people today, Autistic or not, to misunderstand friendship. 95% of your Facebook friends are not true friends; they are conocidos, known only by some shared attribute. Maybe you play on the same sports team, go to the same art class, see each other in the hallway at school or church or temple or masjid, or live on the same block. But how often do you actually talk to these people? Do you really care about their lives, their interests, their passions? Do you even know their most ardent desires? Doubtful.

Friendship is not based on clicking a button that says "Confirm Friend Request."

Nor, however, is it based on that mother of all misconceptions: "You have so much in common; you'll be great friends!" No, actually, having things in common (even, and sometimes especially, some of your most important attributes like religious and political views) does not automatically mean the acquaintanceship between two people is automatically conducive to actual friendship. There are plenty of people with whom I have much in common -- interests, some goals, beliefs about certain things -- whom I dislike entirely or with whom I know I will never be close friends (even if I don't dislike them.) And of my close friends, we don't often share our interests, and sometimes not even (gasp) our religious or political views. My closest friends include a Conservative Jew, a Muslim, and a confirmed Atheist. I'm a very observant Christian. My friends' interests or passions include marine biology, theater, and the Middle Ages, when I have casual to no interest in any of those pursuits. Of my close friends, only half regularly read my writings, and a few have rarely, if ever, read any of my fiction (which is near and dear to my heart.)

At the same time, of my closest friends, a few are Christian, many share most of my political views, and a few share interests of mine like interfaith dialogue, autism, and creative writing. So what does this mean about common interests? They can add to a friendship, or alter its flavor. But they are not the bones of the friendship, or its necessary requirements for existence.

I define a friend by the following litmus test:

1.) This person genuinely cares about you and your well-being, physical, emotional, and mental.

2.) This person accepts you for who you are, and does not criticize any aspect of your identity, or any of your beliefs or characteristics, or seek to change or alter your identity in any way. More than accepting you, this person encourages you to reach your full potential, and celebrates your uniqueness.

3.) This person is there for you when you are depressed, angry, hurt, offended, vilified, or otherwise in a bad situation. This person will actually provide emotional and practical support whenever needed, without complaint, and will do it out of love (not the romantic kind.)

4.) This person trusts you, and you trust them. That doesn't mean social security number and bank PIN, but it does mean an openness and a willingness to share and discuss matters like personal feelings, family situations, workplace gaffes, and yes, politics and religion.

5.) This person does not judge you on the basis of your political (i.e. liberal vs. conservative), religious (i.e. a theist and an atheist), or philosophical (i.e. a virtue ethicist vs. a utilitarian or a deontologist) beliefs. They may disagree, but (see 4) they will be willing to openly discuss the disagreement mutually respectfully, and will (see 2) respect your beliefs without mocking them.

These items can include common interests. They can include people who are younger or older than you as well as people who are your peers in age. They can include people who live close to you or those who live far away from you. But the most important element in this kind of relationship is that agape love, from which springs the mutual trust, encouragement, and acceptance. And those are the qualities that people need to look for in a friend. If you find one friend who passes that litmus test, you are fortunate indeed.

Study: Do Sheltered Workshops Enhance Employment Outcomes for Adults With Autism Spectrum Disorder?

Published in May, a study entitled Do Sheltered Workshops Enhance Employment Outcomes for Adults With Autism Spectrum Disorder? by Robert Evert Cimera of Kent State University, Paul Wehman of Virginia Commonwealth University, Michael West of Virginia Commonwealth University, and Sloane Burgess of Kent State University suggests that Autistic people who do not participate in sheltered workshop programs do better once employed than those who do. The abstract and options for full access can be found here at SAGE's website. But in case you don't click, here is the study's abstract:

This study investigated whether sheltered workshops help prepare individuals with autism spectrum disorder (ASD) for competitive employment within the community. Two groups of individuals were compared: (a) 215 supported employees who were in sheltered workshops prior to entering supported employment and (b) 215 supported employees who were not in sheltered workshops. Individuals from both groups were matched based on their primary diagnosis, secondary diagnosis (if present), and gender. Results showed that there were no differences in rates of employment between these two groups. However, individuals who participated in sheltered workshops earned significantly less (US$129.36 versus US$191.42 per week), and cost significantly more to serve (US$6,065.08 versus US$2,440.60), than their non-sheltered workshop peers. Results presented here suggest that individuals with ASD achieve better vocational outcomes if they do not participate in sheltered workshops prior to enrolling in supported employment.


There were four questions being investigated: how many in each group were hired, how many hours the hired individuals worked each week, how much the hired individuals earned, and how much money was spent on supportive services for each hired individual. The first two were nearly identical in both groups, but the Autistic people in the sheltered workshops earned less and required supportive services costing more money on average than those who were not in sheltered workshops.

I suppose there are several possible reasons for this major discrepancy.

Firstly, it may be that sheltered workshop programs are not designed for Autistic people. It is a well known fact that there are higher rates of homelessness and unemployment (or underemployment) among Autistic adults, but among the homeless population in general, there are very high frequency rates of intellectual disability and mental illnesses (such as Schizophrenia and Bipolar Disorder) as well as developmental disabilities. Because of this, it may be that the majority of sheltered workshop programs are intended and designed to work well for people with intellectual disability (when many, if not most, Autistic people are not also intellectually disabled, and all Autistic people will always have special challenges and needs that people whose sole condition is intellectual disability may not) or mental illness (again, when not all Autistic people also have co-occurring mental illnesses, and regardless, would have special needs anyway), but not designed to address the specific, widely-varying needs and abilities of Autistic people.

If this is so, sheltered workshop programs, therefore, do not teach Autistic people necessary social skills to navigate the job application process or social situations in the workplace once hired, necessary self-advocacy skills in a vocational setting, or marketable or competitive job skills useful for the Autistic individual in question. The purpose of a sheltered workshop program is, ostensibly, to prepare participants with job-related skills to increase their chances to succeed in the hiring process and in the workplace, but it seems that these programs are not helpful for Autistic people. While the participants who were in sheltered programs had the same hiring rate as those who were not, they were receiving lower wages and needing more accommodations and on-the-job supportive services than their Autistic peers.

The authors of the study note that "[it] is also possible that the sheltered employees were more difficult to place and train as a result of their workshop experiences, such as due to learned helplessness or developing work behaviors that might be acceptable in the sheltered setting but unacceptable in competitive positions."

18 July 2011

What is Self-Advocacy?

Last week, while at a meeting of the Adult Services Subcommittee, a visitor to our meeting said something about "Self-direction," to which I added, "And self-advocacy."

Another one of the subcommittee members, the woman sitting to my right, immediately retorted, "Don't exclude nonverbal people with autism!" This individual is the mother of an adult non-speaking Autistic son with aggressive maladaptive behaviors.

When I responded with, "Excuse me, I didn't say anything about excluding nonverbal people," she continued to say that "Not one nonverbal person is in this room," to which I replied, "But they are welcome to come."

The mother nodded. "They are welcome to come, but you won't see any of them here. They're not represented here. I didn't bring my son so you wouldn't get bruised."

I raised an eyebrow. "Do you mean that literally?"

"If my son were here," said the mother, "he would hurt you. He is very aggressive. That's why he's not here right now."

Later, when someone proposed that the budget for the Department of Developmental Services's Division of Autism should provide services for all people who need them, this mother added, "I read all these people on the internet who are very happy to be who they are, who are proud of their differences and quirkiness, and who are very deeply offended at the idea that they might need services or be cured. We need to make sure the squeakiest wheel doesn't get the most attention. The people who speak the most shouldn't get the most services."

Choosing not to mention the fact that highly verbal Autistic people tend to overlooked in vast numbers in terms of receiving any services in favor of non-speaking Autistic people with few adaptive functioning skills (in direct contradiction to the mother's statement) I responded, "We should amend that language to say anyone who either needs or wants services; that way, those whose families advocate for them can receive services as well as people who request them for themselves." When I said, "We need to ensure that anyone who needs services is able to receive them," the mother snapped, "We're stating the obvious."

Sadly, this kind of animosity and vitriol is all too common in the autism community. We're all familiar with it. But let me dispel a few misconceptions that this mother demonstrated:

Firstly, self-advocacy is not limited to highly verbal people with the Asperger's diagnosis or a self-diagnosis. There are many Autistic people involved with the self-advocacy movement who are nonspeaking, have little verbal abilities, have few adaptive functioning skills, and or may require intensive supported living services, as well as people with many verbal skills, moderate to high-level adaptive functioning skills, and who may require few if any supported living services. To claim that involving self-advocates will exclude nonspeaking Autistics or Autistics with few adaptive functioning skills is untrue.

Secondly, as alluded above, including highly verbal people with relatively high levels of adaptive functioning skills also does not exclude all other Autistic people from either eligibility or funding for services. What it does is expand the eligibility criteria so that all Autistic people, whether verbal or not, are able to successfully petition to receive appropriate and necessary services in their individual cases. This is actually broader and more inclusive than were self-advocates excluded from the process or its results.

Thirdly, "people on the internet" comprises a huge swath of people with varying opinions and beliefs. There are some true extremists out there who promote ideas like "autistic supremacy," akin to the idea of "white supremacy" in that, according to this ideology, Autistic people are inherently superior to non-Autistic people by evolutionary design and innate ability. But the vast majority of Autistic self-advocates do not espouse theories like autistic supremacy. We simply believe that autism is both a disability and a difference, and that the disability should be mitigated and accommodated wherever possible while encouraging and recognizing the validity and value of the difference. For some Autistic people, there is more disability, and for others, there is less disability, but in all cases there is positive difference that, in part, defines the Autistic person's identity, as opposed to being a negative and removable attribute.

Frankly, I'm not all that surprised that my brief comment of two words ("And self-advocacy") was met so quickly with such violent rebuttal. But my hope is that in coming months and years, people from across the autism community -- Autistic people, their parents and families, caregivers, professionals, and educators -- will come to accept that whether or not they might agree on issues like cures and neurodiversity, all of us have valuable and important voices that need to be heard and acknowledged in order for us to move forward.