At this point I need to take a couple of steps back to look at those other parts of the roadway that were leading me toward the establishment of *Autonomy*.

#### **Academia**

In 2002 I discovered that the University of Birmingham was pioneering an Internet-based degree course for professionals involved with, and parents of, autistic children. I thought "Why should it not be open for autistic people too?" In the same spirit in which I set about to challenge the NAS from within, I set about to change the course from within the University. I became the first of one of a select few autistic people, along with Claire Sainsbury, David Andrews,and Heta Pukki, to graduate from Birmingham and in so doing we opened the doors for many others to follow. It wasn't easy being among the first; it never has been.

That being said, it was with growing confidence when I moved from taught master's level studies to Ph.D. research of my own. I had found my niche, and more doors opened for me to engage with academics far and wide on a level playing field as a bona fide researcher, not just a conference attendee with a list of awkward questions.

I had in addition to my autism qualifications, a vocational Higher National Diploma in Media Studies, Moving Image, which I had been studying at the same time as the Web autism course. This was quite a feat as I was studying Psychology at a third college in the evenings as well. Toward the end of media course, I produced a commercially available video with one of the staff there who was also studying media himself. I followed it up afterward with a second DVD, with the same collaborator. The first video was all too much "self-narrating exhibit", but the second one was based on a presentation I had made at the first ever Autscape conference in 2005. This time the video was addressing important questions about the representation of autism, and questioning the diagnostic categories of autism and Asperger's syndrome as they then existed in DSM-IV-TR psychiatric manual [5]. It was perhaps another attempt to talk back to the non-autistic people who were defining us and it was very appropriate material for the first conference/retreat organised in the UK by autistic people, for autistic people. Autscape took its cue from Autism Network International's Autreat conferences which Jim Sinclair had organized in the USA. I have since seen the video described in an academic thesis as "an important autoethnography in this field" [6].

So everything was beginning to come together. I had experiences as a publisher and as an editor since the mid-1980s (service directories and newsletter), and also as an academic presenter and lecturer since 2005. I had become in every sense an academic and engaged beyond pure advocacy into the realms of academic matters which defined the very way in which professionals and clinicians talked about us. I still had a deep and prevailing sense of dissatisfaction with the whole manner in which academia referred to us and continued to consider it as a form of exclusion in which it was still largely a discourse about us without us.

I had answered back with my video, and with my conference presentations but it was increasingly clear that the two worlds which CP Snow had described in the 1950s where humanities did not understand science, and science had no grasp of the humanities was still the paradigm for today. On the one hand, I was familiar and had engaged with the medical/psychiatric researchers, and on the other with the worlds of sociology and disability studies and I began to wonder whether we were really getting that much respect from either. It was also a question of ethics, not conventional ethics as in getting your proposal past the ethics committee but more teleological in the sense of whom did the research serve.

So summing up, the factors leading me toward "Autonomy" were: a foundation in disability rightsand mental health advocacy from a social modelperspective; experience of editing and publishing; and experience of academia as a student, as a researcher, and as a presenter. What else did I need other than the will to start it?

#### **The Journal**

Eventually, whilst still completing my Ph.D., I thought I might as well go for it and start a journal of my own. I had managed already to capture the essence of video production and publication, and I knew I had the capacity to learn whatever I needed to realize what I wanted to do. I wanted it to be something more than merely another version of the many websites and blogs already on the Internet; I wanted something that looked and behaved like the established journals which academics are used to reading and contributing to. I looked around and found that open publishing was the way to go, and determined that the Open Journal Systems platform which had been developed for this purpose by the "Public Knowledge Project" [7] was the best one for me to use, being as it was free to download and had the right tools to create a professional-looking journal that could sit easily among the existing online journal formats.

I determined from the start that it should largely be a peer-reviewed journal, in order to give it the same academic status as journals such as the *Journal of Autism and Developmental Disorders*, and *Good Autism Practice*. However, I also allowed scope to include articles that had never been published or written in an academic context but which could still be considered, as I said before, as "foundation documents" of our autistic movement and community.

The choice of name, *Autonomy*, suggested itself because not only does it encapsulate what the thrust of my thinking had been, agency and autonomy for autistic people, it contains the same "Aut" root of Autism, which has been used before for organizations and events such as Autreat, Autscape, and Autreach. Of its subtitle (*the Critical Journal of Interdisciplinary Autism Studies*), "Critical" was to embody a questioning and examining of the prevailing paradigms of autism research. "Interdisciplinary" indicated that it wished to include contributions from a variety of academic fields.

I endeavored from the beginning to get some support from established and respected Autistic academics such as Stephen Shore and Temple Grandin, who both agreed to lend their approval to the journal. Closer to home, I sought help and general advice in my editorial decisions from Dinah Murray and Damian Milton, both of whom were associated with the University of Birmingham at thetime.

At first I was wary of pushing the Birmingham connection. I had incorporated the University as part of the masthead design for the journal and when the head of the college of social sciences asked to have a private word with me, I was worried that I had committed another academic faux pas. Fortunately it turned out that he wished me to introduce the journal at a plenary session of the forthcoming education graduate conference. I was even presented with an award for my contribution to the research community on the basis of my efforts to set it up.

## **The Ethos of "Autonomy"**

In the words of the rubric: "The emphasis will be on encouraging contributions from autistic scholars who have hitherto had limited exposure to academic publishing. We will feature papers reviewed by respected academics in the appropriate fields, reviews and also feature an opinions section which it is hoped will stimulate a lively interdisciplinary debate. 'Autonomy' will appeal to the widest range of the current autism research community and foster cross disciplinary discourse between the fields of medical research, education and sociology amongst others."

This means in practical terms it encourages, but does not limit itself to autistic contributors alone, as it is important to foster debate and be inclusive. Contributors do not have to declare that they are autistic as there are a number of academics, who for a variety of reasons would find full disclosure difficult in their working environments.

However one early aim of the journal was to highlight and republish pieces that were not written from an academic perspective, but an autistic one. These articles were perhaps familiar to the autistic community but in danger of becoming lost, forgotten or difficult to find as the Internet grows and changes. They were written by people who have had important and pertinent things to say about the autistic community and who have certainly been influential in the development of autistic advocacy, Jim Sinclair's "Why I Dislike 'Person First' Language" [8] and "Don't Mourn for Us" [9] being two examples. I sought to bring these within and alongside the academic canon on the basis of merit, by giving them publication in an academic journal.

"Autonomy" is not without controversy however. Other academics since the debut of *Autonomy* have staked claims to Critical Autism Studies, and some of these have been antagonistic to the original claim, in that they are predominantly non-autistic-led discourses. In the interests of dialogue, it follows that not every article in *Autonomy* will have been written by an openly autistic author. There is room for allies, and for those who are uncomfortable with sharing their status in the public domain for fear of professional repercussions. The main focus however, is on respect toward the autistic community of scholars and the intellectual ownership of ideas that originated within Autistic communities.

#### **References**

1. Oliver,M. (1990).*The individual and social models of disability.* Paper presented at Joint Workshop of the Living Options Group and the Research Unit of the Royal College of Physicians. On People with established locomotor disabilities in hospitals July 1990. Retrieved May 10, 2010, from http://www.leeds.ac. uk/disability-studies/archiveuk/Oliver/in%20soc%20dis.pdf.

**Open Access** This chapter is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/ 4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license and indicate if changes were made.

The images or other third party material in this chapter are included in the chapter's Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the chapter's Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

## **16**

## **My Time with Autism Speaks**

**John Elder Robison**

I didn't know much about autism when I began my journey as an advocate. What I knew was my own life, much of which had felt pretty crummy. Yet I had stayed the course, leaving home, learning to make a living, and figuring out how to be an adult in America. At some point I realized I had done ok, despite my marginal childhood, and I started looking for a way to give something back to the community.

At the time my sense of community was local; defined as the area in Western Massachusetts where I'd grown up. By the early 90s I was in my 30s, with a wife and a young son, and I knew there must be millions of young people growing up marginalized, as I had been. Some were abused, others abandoned. I wondered who spoke to them, and if anyone told them life can get better when we grow older. That was the start of my advocacy.

A friend of a friend invited me to a school where I talked with at-risk kids. Another friend invited me to the local jail where I met people in a

J. E. Robison (B)

Amherst, MA, USA

pre-release program. I made several unforgettable visits to Brightside, a Catholic organization that sheltered teens who were victims of abuse and neglect. Having grown up in those circumstances myself I understood the pain of those kids.

My message was that we can move beyond childhood traumas and become successful adults. We are not predestined for jail or the street. Even without college credentials (which were out of reach for me and many of them) I'd been successful (at building a business repairing and restoring cars), and if I could find a wife, get a job, or establish a business, they could too.

In the midst of that advocacy I learned I am autistic. A therapist who'd gotten to know me shared that insight, essentially out of the blue. That was a stunning discovery for me. For the first time, I was presented with a non-judgmental explanation for so many of the challenges of my life. Later I would come to see how autism didn't just disable me—it also helped me with unusual powers of focus, concentration, and sensory sensitivity.

When I first heard I was autistic, I was disbelieving because I imagined autism as total disability and I didn't see myself that way. But as I readTony Attwood's book *Asperger Syndrome* [1] I realized the therapist was right. The description from the book was me, point by point, and that insight was enough to open my eyes, and begin a process of self-improvement that continues today. That informal diagnosis has been confirmed by the Autism Diagnostic Observation Scale [2] and other processes at autism clinics. All opened windows into my mind, and how I'm the same and different from others around me.

Today I know that people of my generation were seldom diagnosed with autism if we could talk, and there is a whole generation of people like me, who grew up without a proper diagnosis.  The problem was, those descriptors didn't lead to therapies that were very useful for someone like me. They also predisposed others to a rather negative view of individuals who were "different."

Once I learned about autism I realized there must be many other young autistics just like me. I felt I had a message for them, but did not know how to find them. In 2006 I decided to share my thoughts in a book. That narrative became *Look Me in the Eye* [3] and its publication connected me to autistic people all over the world.

Readers looked to me as an expert on autism, but I wasn't an expert in the traditional sense. I had never studied autism in the way a teacher or psychologist might. Yet I had a lifetime's experience being autistic. To the extent my traits were characteristic of autistic people, I had an inside understanding of them.

Today autistic people are visible everywhere, but that was not the case a decade ago. We existed in the same numbers but we were invisible. Most adults were like me—undiagnosed.  Few were willing to step forward and say, Look at me! I'm autistic!

Yet some people did just that. Daniel Tammet released a bestselling book (*Born on a Blue Day*) [4] about being autistic a few months before my own came out. Temple Grandin and Margaret Scariano [5], Donna Williams [6], and Stephen Shore [7] had published stories previously. All of us were unique in terms of our interests and abilities, but we had this in common: We recognized that autism was a way of being, not a disease to be cured, and we should make our best life as autistic adults.

That viewpoint stood at odds with an emerging community of parents whose kids were being diagnosed in increasing numbers. Changes in the diagnostic standards and evolving awareness resulted in an explosion of diagnoses, and at the time, many assumed autism itself was becoming an epidemic. Some parents seized on the idea that their kids were injured by vaccine, and they talked about cure and prevention.

When *Look Me in the Eye* went on sale it competed with another newly released book, *Louder Than Words* [8], which told the story of a child who was supposedly rendered autistic by vaccine. Both books were bestsellers in the autism community but their messages could not have been more different.

After my first book came out I heard from a number of autism organizations, the largest of which was Autism Speaks. They were newly founded, and already controversial when *Look Me in the Eye* was published. Their portrayal of autism was that of a monster that ruined marriages and stole children. While that played well for fundraising, it was challenged from the beginning by autistic people, who found that kind of talk offensive.

My own book and life story were about building my best life, just the way I was. Having learned through study that autism is a stable neurological difference, not subject to cure, I saw no other sensible course of action. When I read the narratives that were emerging I wondered how much proposed research would possibly benefit people like me. They were focused on finding a cause so they could find a cure. I saw that as totally irrelevant to an autistic person like me. My problems were how to get through school, how to find jobs, and how to sustain relationships.

As I met more autistic people I came to see how some seem far more impaired than me. I saw families where one person was autistic with no trace of autism elsewhere in the family tree. Other families seemed full of autistic people, in every generation. The cause of autism in my case and some others seemed evident—it was woven into our family tree. It wasn't so clear in some of the other families. That opened my eyes to the idea there may be many "autisms" and many paths into this thing we call autism.

Scientists began writing me as soon as my book was announced. They were eager to find autistic adults who could talk about their ideas for autism research. Those conversations led to my joining advisory boards at universities, at hospitals, and in government. It was there I began meeting autism scientists and policymakers.

In December of 2007, University of Washington child psychologist Geraldine Dawson was named Chief Science Officer of Autism Speaks. After reading my book she sought my input on the direction of autism science. I became the first autistic person to advise Autism Speaks on research to serve autistic people.

By that time I had visited a larger number of autism schools and programs, and talked to countless autistic individuals. One thing that came through very clearly was that we needed help with independent living. For some of us, that meant help with organization. For others we needed strategies to manage sensory sensitivities. Some needed help communicating with the non-autistic public around them.

 My life as an autistic person allowed me to put proposed research in perspective with a key test: *What would this mean to someone like me?* All too often, proposed studies had no beneficial connection to actual autistic people.

That bothered me a lot, particularly as I learned about the breadth of medical problems afflicting autistic people. For example, epilepsy is managed among the non-autistic population but it's seemingly uncontrollable for many autistics. Many of us live with severe gastro-intestinal issues. Anxiety and depression are constant companions for most of us. Those should have been hot topics for research, but they were not.

When I looked at the research Autism Speaks was funding, I saw next to nothing that had potential to resolve the problems I saw among autistics. Instead they were heavily focused on basic genetics and biology. To me, the disconnect was obvious even as the researchers defended their current courses of action.

From the beginning, autistic people were skeptical of my involvement. Some asked why the science community would pay attention to me, a lone autistic who was not even a scientist. Others asked how I could have anything to do with a group that said such awful things about autistic people. The language Autism Speaks used to describe autism and autistic people was very troubling, but I believed they might change their message once exposed to actual autistic adults. Staffers like Dawson seemed to share that belief. In hindsight I see that thinking was naive. It was hard to imagine myself as diseased or damaged, but I understood those words made people open their wallets and I knew our community needed help.

My involvement was limited to recommending courses of research. I had nothing to do with Autism Speaks public statements. It always troubled me when people in the community thought I was an Autism Speaks employee or spokesperson, because I was never either of those things. It embarrassed me to be associated with them, but at the time they were the largest private funder of autism research in the USA and I thought my impact there might be more impactful than at a smaller organization.

I continued to advise Autism Speaks on science, and I also continued my service on autism committees at the National Institutes of Health (NIH), the Centers for Disease Control (CDC), and the Department of Defense. Of those groups, Autism Speaks was always the most controversial. I often wondered if it was worth staying involved, but I kept harboring a hope they would change their rhetoric.

Then in 2009 [9] Autism Speaks released its now infamous *I Am Autism* video which characterized autism as a monster, destroying lives and families. As an autistic person it was hard to see that video as anything but a demonization of the essence of what I am. Thousands agreed, and the ensuing public relations debacle highlighted the widening gulf between certain parents and the emergent community of autistic adults. Parents who imagined themselves as victims of the "autism monster" justified themselves by saying autism in people like me was somehow different, even as the evolving science said that wasn't true.

There was little doubt that I was less disabled than some other autistics, but people vary in every community, and one thing we autistics tend to agree on is our perception of ourselves: we tend to feel less disabled than outside observers judge us to be. I've met a few autistics who think autism is a horrible disability and want a cure, but most of us accept that we are what we are, and do the best we can.

I tried very hard to deliver this message to parents inside and outside of Autism Speaks. In addition to being an autistic person, I was a parent of an autistic son, and I thought I understood how they felt, even if I did think some of their ideas were unhealthy and counterproductive.

In July of 2012, I attended a strategic planning meeting for Autism Speaks in San Francisco. I sat in a room with a dozen esteemed scientists from some of the most prestigious institutions in the world. At that meeting, I proposed that we ask the Autism Speaks governing board to drop the word "cure" from its mission statement. The scientists were all in agreement. Instead, we proposed that we funded research to understand the biological basis of autism and how we might relieve specific aspects of autistic disability. The scientists agreed that no one was researching the broad idea of "cure," and evidence suggested "cure" was not a realistic goal. Remediation of disability is a realistic goal.

After the meeting I expected to hear something from Geri Dawson. Perhaps they'd want me to attend their board meeting, to explain this proposed mission change. The main Autism Speaks board meeting came and went, and nothing happened. I called Geri. "They were not ready to hear that," she told me. The resolution had never even been discussed. I was deeply disappointed, and sad.

A few months later Geri left for a new job running the autism center at Duke University. I was sorry to see her go, but I understood as I shared her frustration with the group's fixation on what I believe we both saw as unhealthy ideas. Rob Ring—a former pharmaceutical executive—was named to take her place.

In October of that year (2013), Autism Speaks announced an autism summit to be held inWashington, DC. Significantly, there was not a single autistic person scheduled for attendance. Then in early November Autism Speaks founder Suzanne Wright followed that up with a truly horrific oped. In it, she suggested that millions of autistic people were "lost," taken from society by the monster autism. She said families, and people like me, were "barely living." The response from autistic people was predictable.

I found her article extremely offensive. It made me think of the *I Am Autism* piece they had published four years previously. Worst of all, people in the autism community blamed me for being complicit in the newest Autism Speaks debacle. More than a hundred people wrote me to ask how I could be associated with an organization that promulgated ideas like Wright's.

That was a question I could not answer, because I felt the same way. In addition, I felt a deep sadness, realizing my four years of advocacy work within the organization had not made one bit of difference to the Wrights, who headed the organization. I wrote a letter to Liz Feld, the president.

In my letter, I said:

Autism Speaks is never going to be accepted by the broader community of autistic people if they continue the fear-mongering and "sick child" talk…This kind of talk does not do any of us any good.

The idea that [Mrs. Wright] would once again convene a "summit" without any meaningful autistic representation is extremely troubling to me, particularly because we've covered this issue before.

I'm starting to feel like Mrs. Wright is in a very different place than most of the people I see in the autism community…Is Autism Speaks going to be able to shift its focus away from her "diseased child" model to focus on consulting with autistic people of all ages…about how their needs might best be served, in a non fear driven environment?

After two days without an answer, I made my decision. On November 13, 2013, on my way to deliver an autism talk in Grand Rapids, Michigan, I wrote a resignation letter. I sent it to Liz Feld's email and I also posted it on my blog (http://jerobison.blogspot.com).The reaction from the autism community was swift.

Most commenters supported my decision to stand up for my beliefs. Online comments (there were over 200 on the blog post alone) were critical of the ideas expressed by Mrs. Wright and of Autism Speaks for continuing to give her views a home.

There were others, though, who expressed solidarity with Mrs. Wright's ideas. Reading their comments, most seemed to be parents who blamed autism for stealing their own children. While I understood how parents might feel that way, I had spoken about how unhealthy that kind of thinking was, both for the families and for the autistic children. Yet it persists in a portion of the community to this day.

I hoped my departure would precipitate some kind of action, but Autism Speaks remained silent on that issue. A number of staffers spoke to me privately, expressing sadness or regret over my decision to leave. They all seemed to understand how I felt. In the past five years many have moved on to other jobs.

Autism Speaks' research portfolio remains heavily weighted toward biology and genetics, and studies that are unlikely to materially benefit this generation of autistic people. I've come to see disagreements with this view as illustrative of the disconnect between what we autistics say we want and need, and what researchers say they should study to help us. It's one reason we autistics need more influence over the research agenda.

The organization's silence led me to consider whether I overestimated my importance to the group. Geri Dawson and the scientists were sincere in seeking my input and I feel we learned much from each other. Yet the Wrights seemed to exist in a separate world, and I don't know if they even knew who I was. I'd been the only autistic person to have a voice in science, but that did not seem to make a lasting difference. I'd spoken often, but I wasn't heard by the people in power. Meanwhile, I gained a false confidence as lower-level staffers agreed with my positions. None of us had any influence with the leaders. As time passed and I reflected, I realized Autism Speaks was misnamed. They do not speak for autism, or autistic people, and they never did.

Their founder was a media executive; their name a marketer's creation. Many of the staff described themselves as non-profit professionals, and none of the senior people were autistic.They were very effective atfundraising, and painting a picture of autism that elicited widespread sympathy.

Autism-as-tragedy helped them raise hundreds of millions of dollars. Groups like Charity Watch reported that they spent lavishly on themselves and their organization compared to other medical nonprofits.Their annual reports told a sad story. Monies raised locally paid headquarter's salaries and supported distant researchers. Very little returned to the communities who raised the funds. Perhaps it's all about the money, I thought, and my ideas of acceptance and fitting in are not a basis for tens of millions in donations the way "stolen children" and "ruined families" are.

I had imagined I was making a difference on their science board, but the Wrights called the shots when it came to investing the organization's money, and the research I had advocated for took a back seat to theWright's agenda, which appeared to be biology and cure. Had I been able, I would have made different choices.

Autism Speaks would probably disagree with me, but I felt then and feel today that their focus on causes and cures did very little to help the millions living with the reality of autism. From the beginning of my autism advocacy, I have kept that goal in sharp focus and I'm quickly frustrated when others can't do the same.

I met a number of bright dedicated researchers while volunteering for the Autism Speaks science board. Many of us continue to work together today, on government boards, with the World Health Organization (WHO), and with the International Society for Autism Research (INSAR), the professional society for autism researchers.Those other organizations have changed significantly in response to autistic input. We have a strong voice in creation of our government's autism plans. The WHO's International Classification of Functioning, Disability and Health (ICF) Autism Core Set recognizes both disability and exceptionality in us, thanks

to autistic input (http://jerobison.blogspot.com/2018/04/autism-abilitydisability-and-icf-core.html). INSAR has encouraged making autistic people research collaborators. American public health agencies do the same. They expand their embrace of the community every year.

Since my departure Autism Speaks has seen considerable upheaval. Liz Feld left, followed by Rob Ring. Mrs. Wright passed away in 2016 and her husband resigned his position a short while later. The organization's funding of research has dropped these past few years.

Two years after my resignation Autism Speaks announced Stephen Shore and Valerie Paradiz were joining the organization's board.They were actual autistic people with a say in the group's governance. While I applaud them for doing that, I'm still waiting for substantive autistic-led initiatives from the organization.

Elsewhere in the autism community, there is an evolving and sometimes heated dialogue about who should speak for autistic people. For the last few decades advocacy has been the province of parents, grandparents, and professionals of various stripes. They were the ones who rose up and demanded services in response to the wave of new diagnoses beginning in the 1990s.

Today the kids they advocated for have grown up, and many are finding their voice. One principal venue for autism advocacy is now the Interagency Autism Coordinating Committee (IACC), which produces the strategic plan for autism for the US government. IACC guides NIH, CDC, Defense and other government agencies as well as private groups. At first IACC's advisers were autism researchers, clinicians, and parents. For the past decade, IACC has also had actual autistic people as members. I was appointed in 2011 and continue to serve as of this writing.

At IACC meetings I routinely see differences of opinion between nonautistic parents and actual autistics. The conversation often turns to who should have the primary voice, and I see that it's very hard for non-autistic parents to let go. Yet I feel that is what must happen. Adults speak for themselves in all other walks of life. Autism is a lifelong condition, not a childhood disorder (as was once thought). Autism research, therapy, and policy should be guided principally by autistic adults. It's that simple.

Elsewhere in society we accept the idea that anyone who speaks for a group should be a member of the group. By that reasoning any spokesperson for autistic people should be autistic. A parent can certainly speak for autism parents, but that is a different community and like all parents, their wants and needs are sometimes at odds with those of their children, particularly as the children grow up.

The day may come that Autism Speaks is led by actual autistic people. I hope that happens. Alternately, Autism Speaks may remain primarily a parent advocacy group for families with young children on the autism spectrum. That is effectively what they were in the beginning, and where they may be most at home.

Actual autistic people seem more drawn to autistic-founded and autistic-led groups like the Autistic Self Advocacy Network (ASAN) and I expect they will grow more powerful as their membership grows and ages.

I joined the Autism Speaks science board in the hope I could help move their science in a direction that would be more beneficial to autistic people. At the time I thought their legacy would be good autism science. I left the Autism Speaks science board because of their hurtful depictions of autism and autistic people. Autism Speaks did not make a huge mark in science, and with drops in funding their significance in that world has diminished. It's toxic rhetoric that has become the organization's legacy.

Meanwhile we autistic people are still here. We're not missing, and we're not lost. Monsters will not take us, because we are strong. When it comes to policy, parents and clinicians certainly have a say, and deserve a seat at the table, but the table rightly belongs to us. We are autistic people.

#### **References**

spectrum of autism. *Journal of Autism and Developmental Disorders, 30*(3), 205–223.

**Open Access** This chapter is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/ 4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license and indicate if changes were made.

The images or other third party material in this chapter are included in the chapter's Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the chapter's Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

# **17**

## **Covering the Politics of Neurodiversity: And Myself**

**Eric M. Garcia**

I first learned about neurodiversity in the summer of 2015 as a reporter for *National Journal*. I was recruited there largely by Ron Fournier, a columnist I befriended when I emailed him as a college student after he wrote a story about his son with Asperger's syndrome. Ron suggested I read a book called *Neurotribes: The Legacy of Autism and the Future of Neurodiversity* by his friend Steve Silberman [1]. It was the first time I read about the neurodiversity movement.

At around that time, I was writing an essay that mixed reporting with my own personal experiences as an autistic reporter for one of the last print editions of *National Journal* [2]. Even though I had been diagnosed with what was then Asperger's syndrome when I was kid, I had almost no experience writing about my own experiences or exploring much about the autistic community in D.C. or at large. I knew vaguely what autism was but did not know how my own story fits into the larger context about autism and certainly didn't understand what neurodiversity meant.

E. M. Garcia (B) Washington, DC, USA

I hoped it would be a fun, chatty piece about the secret lives of autistic reporters and people who work in politics in a city that values social capital even when autism makes socializing difficult.

But the magazine's editor, Richard Just, asked me why this story should exist. In a mix of frustration and hubris, I said American society focuses too much on "curing" autistic people and not enough on helping autistic people, particularly adults. Richard said he wanted 10,000 words on it.

The essay—a slim 6500 words—set my trajectory today [2]. While I didn't have a clear idea of what the term *neurodiversity* meant, the piece argued policy should bend toward this radical idea. The notion was society should accept and accommodate people with autism, dyspraxia, ADHD, or other conditions considered an abnormality. Neurodiversity wasn't diminishing the specific challenges of autistic people but rather, the essay argued, like other disability rights movements before it, society should welcome neurodivergent people and give them the tools necessary to live a life of dignity. Through research, interviewing, and reporting, I see that neurodiversity is an argument for civil rights; that instead of the world trying to make us be more "neurotypical," the world should celebrate our atypicality and accommodate accordingly.

 But when it came to reporting about autism, I noticed while many journalists quoted parents of autistic children, professors, nonprofits, or legislators, they often ignored autistic people.

Though they have a gross oversight, I don't blame most journalists. Oftentimes when we are ignorant about a new beat, we type in an assortment of words into Google and hope for the best. With autism, the first results are often groups with little autistic representation like Autism Speaks—which only recently began adding autistic people to leadership positions [3]—professors, and parent leaders. Similarly, because autistic people were seen as a burden, they went unheard while their parents' struggles took center stage. Hence, most autism stories don't feature the people with the most expertise: the people who live with autism on a daily basis.

That matters because those who are most heard get the most attention and in turn, are the ones who shape policy. It is for this reason I made it a point when I wrote my initial story to make sure I interviewed as many autistic people as possible. It was largely through Dylan Matthews, a writer at Vox.com, that I was introduced by groups like the Autistic Self Advocacy Network; its leaders Ari Ne'eman and Julia Bascom; as well as other prominent autistic advocates like John Elder Robison, Lydia Brown, Liane Holliday Willey, and Dena Gassner.

I became more well-acquainted with other autistic and neurodiversity advocates like Finn Gardiner, Sara Luterman, Samantha Crane, Morénike Giwa Onaiwu and Sharon daVanport. All of them were essential to understanding permutations of autism and what it meant to celebrate neurodiversity, and in turn they gave me resources fellow reporters didn't have: a cache of autistic people whom I could consult anytime autism popped in the news.

It might sound trite to say something "changed my life" but writing and publishing that essay completely upended my career.  But I remember the day the essay being published and receiving a call from Ron on what would be my last day at *National Journal* with him in tears simply saying "holy shit" with pride at how moved he was by it.

That same day, I got a call from Sen. Orrin Hatch, then the most senior Republican in the United States Senate who was then chairman of the Senate Finance Committee, saying that he had helped sponsor the Americans with Disabilities Act that passed in 1990 and that if I ever wanted to speak with him about autism, I was welcome to visit his office. I had asked Sen. Hatch questions multiple times in the halls of Capitol Hill and was never any more than a nondescript nameless reporter. But now, I was someone whom he knew on a first-name basis and could pick out.

Similarly, for a week, when I opened Twitter I would see journalists whom I deeply admired write about how my essay would "move you." Some of them were bylines I read regularly in *The Washington Post*, *The New York Times,* and people elsewhere, and whom I regularly emulated. A few months after the publication of that essay, I saw a journalist I admired and emulated while I was in college at a gala and he told me the piece was amazing. While I was humbled by him complimenting me, in the back of my mind I remembered when he didn't return my email when I was a lowly intern in Washington asking if we could meet for coffee.

At first this success gave me a sense of vindication about my decision to write. I could now pitch stories about autism and people would consider me credible because I poured my heart into this piece. It also landed me a book contract that would further burnish my credentials as an "autism expert" journalist.

But in the same respect, while I wanted my piece to shed light on autism, I feared that I was just becoming another "inspirational story" about how I overcame autism. I worried that in my attempt to counter the narrative that autism is a debilitating condition, I somehow inadvertently lifted myself up as above being autistic. I don't think I ever said it to myself but possibly subconsciously, what I decided to do as a journalist was to show that my self-portrait was not the outlier but was in fact common among autistic people and that we were in fact, deserving not of pity but of shared humanity.

What was peculiar about this newfound attention was that the essay was published on my very last day at *National Journal* as I was leaving to start a new job as a staff writer at *Roll Call* . To boot, I felt like that was the best way to be an effective voice for autistic people; I didn't want to continue dining out on that essay and be seen as "the autistic reporter." I felt—and continue to believe—the best way that I could assist autistic people was to show I was as good of a reporter as my neurotypical counterparts.

As a result, I made it a point that when I began writing my book, which is still in progress as of February 2019, that I would not just make it into a personal memoir, but rather that I would rather chronicle the lives of other autistic people and show how society often creates more obstacles for autistic people than the actual autism does. Similarly, when I was asked to write a piece for *the Washington Post* about how parents teach autistic boys about consent in sex and relationships, I chose to flip it on its head and say that it is important to teach autistic people consent because they deserve to have as fulfilling love lives and sex lives—if they so choose—as neurotypical people [4].

The more I researched and the more I saw how politicians discussed autism, the more I felt that while I did not want to become part of the news and did not want to make myself the story, my own understanding of autism and my connections to the disability community could allow me to contextualize autism and bring new voices into the public sphere that would not otherwise have been heard.

Incidentally, one of my first opportunities to bring this perspective to my reporting came within months of me starting my job at Roll Call when Democratic nominee Hillary Clinton announced a comprehensive platform on autism [5].

When Clinton embarked on her second presidential campaign in 2016, she released a comprehensive set of policies that read like a neurodiversity wish list like conducting a nationwide survey of autism prevalence in adults, banning physical and chemical restraints, and creating an Autism Works Initiative [5]. As someone who had just written an essay about this a month ago, much of what I read in her policy platform read like things I had heard advocates dream would happen in our interviews.

Clinton's own maturation on autism was reflective of how the politics of autism changed. In a 2007 speech in Sioux City, Iowa Clinton spoke about being a student at Yale Law School and spending a year at Yale's Child Study Center in the 1970s, when autism was still largely blamed on unloving mothers and told a story about a female friend in Little Rock, Arkansas whose son had autism.

"And I spent time in her home, I spent time with her and her son and my instinct perhaps as a mother was that this could not be the explanation," she said [6].

As a senator, Clinton introduced her own legislation called the Expanding the Promise for Individuals with Autism Act, a bill that never passed but was introduced months before her Sioux City speech [7]. In the Sioux City speech, she talked about helping train educators to handle autistic students and providing proper services for autistic adults, which is still groundbreaking by today's standards.

"With access to the right types of services, including housing, vocational rehabilitation, we can help adults with autism live rich and full lives," she said in the speech [8].

But even with these important steps toward progress, Clinton's speech was still couched in the political zeitgeist about autism at the time. In the sentence before saying there are insufficient services, Clinton said "we don't know how to cure it and we don't even know the best ways to treat it" [8].

Similarly, Clinton credited parents when she said, "driven by their love and devotion, mothers and fathers across the country have raised awareness, demanded funding, and opened our eyes to the needs of so many children" [8].

Clinton's longstanding focus dating back to at least her days in law school shows her shift in rhetoric from her first to her second presidential run was not solely for political expediency but which came from listening to autistic people.

Part of this was fueled by the fact that Clinton had the support of autistic self-advocates like Ne'eman, who was on the conference call for reporters, including myself, to announce the roll-out of these policies. He said at the time "the fact it was requested and the fact many of these priorities come directly from the community is extremely significant" [9]. While there were a number of estimable reporters on the line, the fact I am autistic I felt could give me an advantage. While other reporters wrote a simple breakdown of the policies, I was able to call autistic self-advocates, who would be the most affected by these policies and chronicle their varied reactions. Being autistic and having that institutional knowledge gave me a roadmap other reporters didn't necessarily have, without bringing my own narrative into the story. It showed that I knew which perspectives mattered the most with these things.

Furthermore, my understanding of autism allowed me to debunk hoaxes and pseudoscience that arose in the campaign. Then-candidate Donald Trump decried autism as being "an epidemic" during the primary debates and told a dubious anecdote about a friend's child becoming autistic after vaccinations [10]. Similarly, during the campaign, Trump met with Andrew Wakefield, the discredited former doctor responsible for promoting the bunk theories of vaccines-autism causation, and Gary Kompothecras, another major promoter of the anti-vaccine theories [11].

After his election, Trump continued his egregious peddling of vaccine theories by promising Robert Kennedy Jr., a prominent anti-vaccine activist, that he would chair a vaccine safety commission [12].

Thankfully, it appears that Trump has not mentioned the idea frequently and Kennedy told *the Guardian* that the administration "cut off all communication with people who care about this issue" [13].

But despite backing away from vaccines, Trump has continued to peddle harmful narratives. On April 2, 2017, Trump's presidential proclamation for World Autism Day read "My Administration is committed to promoting greater knowledge of [autism spectrum disorders] and encouraging innovation that will lead to new treatments and cures for autism" [14].

Similarly, Trump lit the White House blue, which is emblematic of Autism Speaks, for Autism Awareness Day, an action that was criticized because it sees autism as a problem to be fixed and isn't driven by autistic people themselves [15]. Unlike Clinton's comments, these came after better understanding about autism as a condition and after autistic voices have been heard in the public square.

As an autistic political reporter, this new era where there is a resurgence of anti-vaccine conspiracy theories and autism is still used as an epithet at times, often makes me question my place in the autistic community. I am not and will never claim to be the sole voice for autistic people in political media. My other autistic peers are more than capable and probably better at writing about the topic than I am. Similarly, as someone who is now an editor at *The Hill*, another congressional trade publication, I feel an obligation not to pick one side. But it can at times feel maddening when I feel like the side of autistic people doesn't even get a chance to say anything, even those of my autistic brethren who can't verbally speak.

I don't really know if I have changed people's hearts and minds about autism. At times I worry that I have an inflated view of myself as the guy who is trying to monopolize "the autism beat" in the Washington press corps. But for the time being, I see so few figures who have the context, the understanding and frankly, who care enough to provide those things to news consumers. How could I, when I speak and regularly interact with autistic people, not want to ensure others get our narrative correct? I hope that by both my presence among my colleagues and peers and by the words I write, I can deliver truths not by protesting or lobbying for rights, but by changing who people regard as worthy to deliver their news and ensuring that autistic people are accurately portrayed and their needs be seen as legitimate.

## **References**

**Open Access** This chapter is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/ 4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license and indicate if changes were made.

The images or other third party material in this chapter are included in the chapter's Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the chapter's Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

# **18**

## **"A Dream Deferred" No Longer: Backstory of the First Autism and Race Anthology**

**Morénike Giwa Onaiwu**

The way I perceive things, my involvement as one of the editors of the first-ever anthology on race and autism, *All the Weight of Our Dreams: On Living Racialized Autism* [1], was by pure accident.

An extremely fortunate accident that I will eternally be grateful for, but an accident nonetheless.

The anthology itself was conceived in the mind of Lydia X. Z. Brown, an Autistic disability rights activist with whom I serve on the Board of Directors of the Autistic Women and Nonbinary Network (AWN Network, a grassroots Autistic-led nonprofit for gender minorities that was founded in 2009), and AWN Network enthusiastically agreed to partner with Lydia to bring the project, announced in summer 2014, to fruition.

Having learned about the idea early in its development, I, like many others, embraced and helped to promote it. Community support for the anthology was vital for a variety of reasons—fundraising being one of them. Though AWN Network had successfully secured a small amount

M. Giwa Onaiwu (B) Houston, TX, USA

of grant funding and sponsorships for the anthology, in order for it to become a reality a lot more money was going to be needed…and as none of us had much money, it was clear that we were going to have to rely upon crowdfunding to obtain the rest. However, to get people to donate, we knew it was crucial for us to make a convincing case for why this anthology needed to be published. So in the beginning, when the anthology was just a creative idea, a lot of the focus was on finding the means to make it happen. To justify a reason for its existence.

Ultimately, the most compelling reason we could come up with, and the one that successfully enabled us to reach our \$10,000 fundraising goal in approximately one year (\$6712 from 143 different supporters, \$2000 from a state Developmental Disabilities Council, \$1000 from the Autistic Self Advocacy Network, and the rest from in-kind donations) was simply the truth. And that truth is one that Autistic people of color like myself, Lydia, E. Ashkenazy (a Deaf multiracial Autistic woman who is also one of the editors of the anthology), and the more than 60 different individuals who would later become contributors to our anthology share: that the existing public discourse about autism is glaringly incomplete.

The experiences, stories, and images of people of color on the autism spectrum are conspicuously absent both in the public view and sadly even within the sphere of disability. The glaring lack of visibility of people of color within the disability community which promptedVilissaThompson, a Black disabled writer and social worker, to coin a phrase that became a viral hashtag (#DisabilityTooWhite) clearly exists within the autism realm as well. In fact, it might be an even greater problem.

Sharing that simple yet profound truth over and over was successful. Our plight resonated with people and they supported us both in word and in coin. And eventually there was a sufficient amount of money to begin the actual work of creating the anthology.

Initially, the plan was for Lydia to serve as the Lead Editor of the project and E. Ashkenazy as Project Manager. However, as a result of the overwhelming response to the call for submissions (submissions were pouring in from various countries across the globe), it became apparent that another member of the primary editorial team would be needed and I was selected. So although I had not originally planned to be involved with the anthology beyond providing general external support for the idea, things changed, and when approached to join the team I happily accepted. At the time I was not fully aware of the depth of the task we had before us nor could I grasp its overall significance; I was just excited, but it would later dawn on me.

We were quite an eclectic team, and we had a lot to learn. We were all Autistic. We were all people of color: Lydia is East Asian; E. is multiracial; I am Black. All of us loved to write and had even had some previous work published, but none of us considered ourselves professional writers. None of us had an educational nor work background in journalism; none of us had ever worked for a magazine, book publisher, or newspaper. None of us had ever been involved in a project quite like this. In addition, we all had major time constraints due to our busy lives and numerous responsibilities. Lydia was enrolled in law school at the time; E. was running a professional skating and dance company; I was teaching. E. and I had eight kids between the two of us. All three of us had various advocacy commitments we were engaged in that required time and energy, and we all had different work schedules. Furthermore, we all lived in different parts of the US: E. lived on the West Coast, Lydia on the East Coast, and I was in the South.

However, all three of us were devoted to the project and willing to "learn on the job" and challenge ourselves to make things work. We all possessed a strong work ethic, an enormous amount of enthusiasm, the ability to "think outside the box" which helped us to grasp new things quickly, and the ability to hyperfocus. We had different working styles: one of us was a planner who liked to make lists and preferred to stay ahead of deadlines; another was a perfectionist and procrastinator who would have periods of inactivity/dormancy and then become infused with a creative burst of energy that enabled rapid completion of a voluminous amount of work at the very last moment; the other person was a combination of these two types.

Our differences worked in our favor as we all brought unique strengths to the team and were able to support one another well if we faltered because we didn't all share the same weaknesses. We were united in our belief in the importance of the anthology and in our respect for one another. Over the years we maintained regular (sometimes multiple times daily) communication via email, message, and other electronic means. Together, along with several other dedicated individuals, we built something real, something monumental, something beautiful.

From the very beginning, it was important to us that the anthology remained true to Lydia's original vision (which was one that we shared). It was also important that we created something that we believed in and could be proud of. We realized early on that many established "best practices" that are utilized in the development of publishing a book of this volume, while generally helpful and useful for others, were not going to necessarily work for us. Our process was going to look and feel different in several ways, and was going to be both non-linear and nontraditional. Because of this, we weren't going to have a formal framework, "blueprint", or set of instructions that we would be able to rely on. Where there was no precedent, we had to be ready to trust one another and forge our own way—and we did.

We developed and agreed upon several guiding principles throughout the process of birthing the anthology. Some of them include:

**Nothing About Us Without Us**. Every member of the (lead) editorial team, which consisted of the three of us, had to be an Autistic person of color (PoC), and we needed to have full autonomy over our work.

We did allow Autistic people who were not PoC to assist with the project itself, and many did, including Shain Neumeier and Clare Barber-Stetson (White Autistic colleagues who assisted with reviewing submissions and providing feedback on any necessary revisions), Amanda Gaul (White Autistic colleague who provided legal and financial assistance), Melanie Yergeau (White Autistic colleague who completed most of the formatting [along with Tracy Garza who is an Autistic PoC]), and Lori Berkowitz (White Autistic colleague who provided web and technical support). We also had a number of White allies in the community help with generating interest and media attention for the anthology. Solidarity is important, and we appreciate the efforts made by the many people who supported this project.

However, it needed to be **our** project. "Our" meaning Autistic PoC. Led by us, coordinated by us. Not by White people—no matter how supportive and like-minded they might be. It was imperative that we did not perpetuate the false notion that people who do not have the lived experience of being a PoC are somehow able to effectively represent us. **Every** key decision about the anthology had to be made by and approved by us—period.

In that vein, we strived to have as many Autistic people, and especially Autistic PoC, involved in various aspects of the project as possible. The only contributors we accepted for publication were from among those who identified as Autistic PoC. We also intentionally sought out a graphic designer who was an Autistic PoC (Finn Gardner) for the cover art of the anthology. Although not a formal part of the anthology, another Autistic PoC, Sharon daVanport (AWN Executive Director), provided logistical support throughout the entire process. Moreover, we set aside funds to hire an Autistic PoC after the anthology was published to assist with a social media and marketing campaign.

We welcomed, and still do welcome, any and every person to read the anthology—regardless of what race they are and whether they are Autistic or not. It is not something that is only FOR us. But it had to be only BY us—and only us, and that was non-negotiable.

**Everybody Gets Paid** was another guiding principle that we felt strongly about and one that we will never compromise on.

Far too often the labor of marginalized people is minimized and treated as if it were of little value; meanwhile, those with vastly more privilege go on to profit enormously from the resources they have derived from those same seemingly "less valuable" people. Academics and professionals amass a plethora of publications, enhanced research portfolios, and career advancements on the backs of stakeholders whose only acknowledgment is a gift card and a contrived one line "thank you" written in small print at the end of their abstract or on their last presentation slide (or begrudgingly acknowledged in public decades later after numerous lawsuits, as in the case of the family of Henrietta Lacks).

We refused to be like that. We were not going to ask, nor expect Autistic PoC to contribute to an anthology and not get fair market value for their work. Marginalized people are frequently expected to possess a sense of altruism that is not expected of more privileged people; we are guilted into doing hordes of unpaid work to "help" our people, and/or told that we are getting "exposure" in lieu of paid wages. Well, you can't eat exposure. Your landlord won't accept exposure in place of a rent payment. Exposure doesn't buy diapers and milk. Meanwhile, others are paid for their time and effort. We respect and value the work of our people and if they could not get paid then we were not going to go through with the anthology. We researched market rates to determine what would be fair compensation and we made sure that every single person—from the contributors to the formatters to the attorney to the graphic designer, etc.—received payment for their involvement with the anthology.

We were warned by several external parties that this was not "sound business practice" and that our decision to do this was not recommended. We were told that this would not be profitable. We chose to reject their warnings as we believe in people over profit. Knowing the high rate of unemployment and underemployment among Autistic adults and the many challenges our community faces, how could we even conceive of taking advantage of our own people and cheating them out of what they deserve?

**You Define You** was a third guiding principle. Race is complicated and messy. So is neurology. Although our requirement that **all** contributors whose work was accepted for publication had to be Autistic PoC, we were adamantly against "policing" people's identities with regard to race and being Autistic. Phenotype does not always equal genotype; we refused to define race in a narrow, binary manner. ALL Autistic PoC, including biracial, multiracial and "White passing but PoC identified" individuals were welcome.

Additionally, Autistic PoC from any part of the spectrum were included, regardless of whether a person had a "PDD-NOS" diagnosis, an "Autism Spectrum Disorder" diagnosis, whether the person had self-diagnosed, etc. We did not require any of our contributors to have to conjure up "proof " that they were enough of this category or that category. You define YOU. We recognize that many barriers exist for Autistic PoC to obtain formal diagnoses should they choose to do so and also acknowledge that for some of our people it is neither advisable nor safe to do so.

For the anthology, we opted to accept the validity of people's selfidentification as stated.

**It's Not a Term Paper** was another guiding principle of ours, and one that we have found to be somewhat controversial. We made the decision that we were not going to edit our contributors' pieces to death. Too often rigorous, elitist Western standards are applied to PoC, especially disabled ones, when they are inappropriate for the context. We felt that this would have been an instance where "standard" editing procedures would have created more harm than good. Autism is, among other things, a social communication disability; it is to be expected that there may and likely are some differences in how things are communicated—and that's without taking cultural factors (because all of the contributors are PoC) into account.

We preferred to prioritize retaining the true essence of what our contributors were trying to say over chopping up and "white-washing" their words for the purposes of ensuring they had perfect grammar, punctuation, and spelling. Especially since the accepted pieces come from contributors from a range of ages (one as young as five years old!), countries (including countries where English is not a commonly spoken language), backgrounds, and levels of schooling (from very little formal education to graduate school). Unless there was a pressing need to make grammatical corrections, we chose for the most part to capture our contributors' intended meaning AND original wording as is.

This guiding principle applied to us as well, not just to the contributors; if you review my own preface to the anthology carefully, you might see a word repeated twice accidentally. Other places in the anthology you might find various colloquialisms, ethnic slang, misspellings, etc. Yes, we saw them all—and yes, we left them there. Humans do not write perfectly; why pretend that we do? Why create a written version of a heavily "PhotoShopped" image that barely looks like the real thing when we have an opportunity to be authentic in our presentation? For us, there was no valid reason why and were plenty of reasons not to.

**Real Transparency** was another guiding principle of ours in putting together the anthology. We viewed this project as one that belonged to the community. For before the anthology even had a name, before we had even a single contributor, when it was just a dream floating around in the cosmos that we were trying to make tangible…our community backed us. It was they who provided the bulk of the money for us to pay everyone involved. It was they who encouraged us when we hit snags in the process (which happened more than we had anticipated, unfortunately). It was they who shared with their friends, family, and coworkers about the anthology that was underway to help us to get buyers.

On our AutismAndRace.com website as well as on social media and in other places we were open about timelines that we struggled with (not surprising given that this was a new undertaking for all of us, we are all Autistic people who struggle with executive functioning, and that we were juggling this project among a number of other responsibilities). We were forthright about delays, but also about successes and exciting developments that occurred along the way. We also regularly expressed our gratitude for the support and encouragement we were receiving. Good or bad, promising or disappointing, pretty or ugly…we kept it 100% real with our followers the whole way through.

**We've Only Just Begun** is probably my very favorite of all of the guiding principles of our anthology. Before the ink was dry on the first draft paperback copy of the anthology, we were already making plans for what we wanted to see happen next. The anthology alone was never intended to be the "end" of this journey; it was our beginning.

This is NOT in any way to diminish the significance of the anthology.*All the Weight of Our Dreams* is the first-ever anthology about and by Autistic people of color; quite literally, it made history. It was an important start, a groundbreaking milestone and we remain extremely proud of it. But there is so much more that we want to do to with and for Autistic people of color; the anthology helped us to realize that and to begin dreaming yet again.

It's hard not to feel heartbroken when you mail a contributor's copy to one of the brilliant writers in the anthology—and that copy comes back to you in the mail undelivered because that writer, that amazing, talented Autistic PoC, is now homeless. It's hard not to feel frustrated when you see yet another link to a fundraiser for an Autistic PoC who has been fired from their job again due to racism and ableism and now they are struggling to pay their rent. There are so many stories; there is so much need; there are so many voices still unheard.

We've succeeded in capturing a snapshot of our reality as part of the global community of Autistic PoC. One of its central themes is an illustration of intersectionality. Not in the way it is frequently misunderstood and misused, but as Dr. Kimberle Crenshaw, the Black scholar, attorney, and womanist (among her many honorifics) who is the creator of the term [2], intended: a way of describing the overlapping effect of existing with multiple oppressions/marginalizations—like Autistic PoC do. It's never "just" autism for us, and it's never "just" race. Intersectionality, for us, isn't an intriguing concept to have philosophical debates about; it's our real lives.

And in these real lives, we face unique challenges, but also have unique strengths. It is our hope to be able to impact individuals as well as our community in a meaningful way through this anthology. We have already started to do so, in fact: with a portion of the proceeds we have earned from sales of the anthology as well as an external grant, in summer 2018 on the one-year anniversary of our anthology's publication date, we have launched the first-ever Fund for Community Reparations for Autistic People of Color's Interdependence, Survival, and Empowerment (https:// autismandrace.com/autistic-people-of-color-fund/). The fund, which is operated by AWN Network and managed by the anthology editorial leadership team, provides direct financial support to Autistic people of color through individual microgrants of amounts between \$100 and \$500. We have assisted individuals in purchasing medicine, food, assistive technology, educational workshops, housing costs, legal fees, and more.

We also have plans to develop a few special editions of the anthology in the future, including an audiobook version in as many of our own voices (for speaking contributors) as possible and a version with full-color artwork from the anthology. Additionally, we hope to be able to obtain funding to help support Autistic PoC with scholarships, to help defray the costs of presenting at conferences, and in other endeavors.

The more that I think about it, my involvement with the anthology was no true accident. It was supposed to be this way, and everything is unfolding the way it was designed. Just as I could not foresee becoming part of it, now I can't envision a future where I am not a part of this life-changing project. It isn't just a book; it's truly a dream come true that has the potential to change hearts, change minds, and hopefully continue to change lives.

## **References**

**Open Access** This chapter is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/ 4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license and indicate if changes were made.

The images or other third party material in this chapter are included in the chapter's Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the chapter's Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

## **Part III**

## **Entering the Establishment?**

# **19**

## **Changing Paradigms: The Emergence of the Autism/Neurodiversity Manifesto**

**Monique Craine**

Throughout this chapter, I will be looking at the actions which led to the development of the Labour Party's Autism/Neurodiversity Manifesto in the United Kingdom (U.K.). I will explain where we are currently with the manifesto and what comes next. I will discuss why I chose the approach I took and who was helpful in moving the cause forward and I will also discuss some of the issues and barriers we encountered on our way. I will also define the terms neurodiversity and neurodivergent but firstly I would like to briefly introduce myself.

## **A Bit About Me**

I am a fifty-year-old, married, mother of three; I am also a graduate and am currently in the early stages of launching a new self-employed venture.

M. Craine (B)

Cwmtwrch, UK

e-mail<EMAIL_ADDRESS>
Prior to embarking on self-employment (for a second time), I had been employed in a variety of different job roles as well as having time at home raising the children; I had worked in everything from waitressing and sales, to running as a candidate for local elections and getting elected as a Liberal Democrat Borough Councilor, with all the responsibilities that go with that.

That's the positive "sales" version of me. There is another side to me which has coexisted alongside this resume version of me. During this time I have battled low self-esteem, severe anxiety attacks, depression, and the feeling that I just didn't fit in since I was in my early teens. I left school with hardly any qualifications, believing I had failed. I was faced with a career advisor who told me I was officially classed as "less able" and that I would never be able to gain a standard high school qualification; she told me I would most likely not be able to continue with education past age sixteen.  I was effectively written off at school.

Back then it was just accepted that I was one of those "slow" children. I often refer to my eleven years of compulsory schooling as an eleven-year assault on my self-esteem. I tended to disconnect in class, to allow my thoughts to focus on other more interesting details. The lessons did not interest me, and I struggled with basics like spelling and reading aloud. I knew I was different from the other children, not just in the way I thought but also in the way I moved, my behaviors, and even in the way I perceived the world around me.

From the age of five, I learned to mask (to pretend I was just like everyone else). At school I became selectively mute for a while, as I knew that if I talked people would call me weird; my solution was simple: "don't talk." I knew that my school work was not as good quality as the children who sat beside me so from age five I would hide my work so that the teachers and other pupils didn't notice my mistakes. I would then spend hours rewriting it at home so that I wouldn't be told off. In a way it is no surprise that I went through school without being diagnosed with any conditions. I did after all go out of my way to hide all my difficulties from my teachers.

#### **Late Diagnosis—Diagnosing Difference**

Although I was not diagnosed with any conditions as a child, I was finally diagnosed with Dyslexia and scotopic sensitivity (light sensitivity), in my late twenties while studying at university. The knowledge I gained about how my dyslexic brain worked enabled me to stop punishing myself over the things I couldn't do and to instead discover new ways to work that took my different neurology into account.

I found that by adapting the way I worked, I could achieve much better results than I could while hiding my difficulties. I also found that I started to appreciate the way my visual memory worked; I had never realized that there were people who lacked my ability to visualize things. The way my visual memory works may make it an issue when it comes to interpreting two-dimensional letters on a page that represent a word, but it is pretty awesome when you can visualize processes in high definition, slow motion, and zooming into the detail. Once I realized that many dyslexic people have this same kind of high-definition visual memory. I realized that dyslexia gave me something awesome that I would not want to live without. Although I still struggled with reading and writing consistently, the simple truth is, I would rather have the amazing visual memory I have than be able to read and write with ease. Thus I felt proud to be dyslexic; I accepted I would need to put strategies in place to help me with the difficulties, but no way would I want to trade it!

I was very positive about being dyslexic even though I do find it a little embarrassing when my children by age six have found themselves correcting my reading to them at night.

The simple truth is I have never overcome my dyslexia, I have never learned to read accurately or consistently but I did learn to read slowly and repetitively for accuracy. I prefer to use specialist software to read things to me to ensure I am taking the correct meaning from text but given time, I can read. I was very positive about being dyslexic and although I still struggle with reading and writing, I am happy that with the right tech I can perform certain roles just as quickly as someone who can read and write fluently and is not dyslexic.

Dyslexia explained a lot in regards to the difficulties I encountered at school, but it didn't explain all my difficulties. After receiving my dyslexia diagnosis in 1997 (age 27), I still continued to seek medical support for my mental health issues. Anxiety was my "natural" state, and my immune system was so low I would catch everything. I was prescribed medication for the anxiety but it did nothing for me. I still struggled with my coordination—I was falling over every day, I was banging myself and breaking things constantly. I was struggling to maintain relationships that had meant the world to me for much of my life and I was unable to keep a job.

In 2012, I was diagnosed with dyspraxia/Developmental Coordination Disorder (DCD). Finally, I understood where my coordination issues and problems with movement came from. Again, post-diagnosis, I was able to create strategies to help me manage some of my difficulties. As before, I have not overcome being dyspraxic, I still have difficulties daily, but now that I account for my dyspraxia I suffer with fewer injuries.

It was also around this time I became active on the internet. I wanted to learn everything there was to learn about the way I functioned so that I could get my life back on track. Dyspraxia accounted for so much but by now I knew there was more than just dyspraxia and dyslexia going on, but I could still get no guidance on how to proceed. In 2013 one of my family members was put on the autism assessment pathway and once the doctors realized that there were cases of autism within my family I was able to get on the pathway for an Autism Spectrum Condition (ASC) assessment.

## **Blogging and Other Internet Activities**

When I first started blogging in 2013 I was still pretty new to my own diagnoses and I had not yet been diagnosed as autistic. Through my early blogs I repeated what I had been told by professionals. I used their terminology about the conditions but I focused on the positives. I had a "can do" attitude and wrote about ways of improving areas we struggled with.

I believed that my dyslexia and DCD/dyspraxia were just down to the way I was wired. I was always going to have to take my differences into account but more often than not, the root cause of my difficulties were social barriers and my own poor mental health as my anxiety was a constant battle for me. I followed quite a few dyslexia groups on Facebook (FB), and would post supportive comments on parents' posts who were asking for help.

After getting my dyspraxia diagnosis I joined a few FB groups for dyspraxia too. My favorite group was called "Dyspraxia - Dyspraxic adults surviving in a non-dyspraxic world" (https://www.facebook.com/groups/ dyspraxiainadulthood). When I joined the group it only had about 400 members and it was very active as the founders had been using the group as research for their book of the same title.

In this Facebook group, I was meeting people with multiple neurodevelopmental diagnoses. Hearing their stories made me realize that my mental health issues, the burnout, the inertia, depression, and the constant anxiety I experienced, could have been brought on by other undiagnosed co-occurring neurological differences, as opposed to being due to a mental health illness. In the end I started my own blog site where I wrote strategy guides so I could post them to the group.

It's worth noting that when I started blogging it was mainly the adult dyspraxic online community I was talking to. However, I soon realized that my tips were not just relevant to dyspraxics, but to a lot of other groups too. The members who had other co-occurring developmental conditions were sharing my blogs in their other groups and similar feedback was coming from them. It was when my blog post on "Cleaning Your Home Made Easy" [1] went viral within the ADHD groups I realized our community had been segregated by a medical model which insisted on separating us from our natural peers and mentors.

The feedback I received for my blog surprised me because it had its biggest success within the ADHD groups. Neurodivergent (ND) adults were sharing it with "before and after" pictures of their houses. It was amazing and to this day I still get comments on how it has changed people's lives. This is the main reason I started talking to and about the Neurodivergent community instead of the segregated individual dyslexia, DCD, ADHD, Autism, etc., online groups. It is why I work toward unifying all the ND minority groups under one more natural banner.

By 2014 my blogs were really successful among the online ND communities in general. I was a well-known figure in the Dyspraxia (DCD) groups but my blogs were not going down as well with the autistic groups as they were with other ND groups. I was constantly getting negative feedback from autistic individuals. In the main, they loved my content but were frustrated by my terminology. Some of these people seemed unnecessarily aggressive over little things like my using person-first language or my using pathologized language to describe neurodiversity. They objected to my saying "person with autism," and for incorrectly using the term *neurodiversity*. A few even trolled me to some extent, posting every time I used any terms incorrectly. Despite these issues, the autistic individuals still seemed to like my content and as the general content was being well received I continued to write my guides and opinion pieces, but if you read my blogs in chronological order you will see how I slowly became aware of the issues surrounding the terminology I had used and over time totally changed the way I wrote about neurodiversity.

Although these autistic people were to some extent trolling me as they would post comments in every group I belonged to, they were not being nasty about it. They just felt the need to correct me every time they felt my terminology ruined an otherwise excellent article. I now consider many of these people among my best friends and am eternally grateful to those who first linked me to the work of Nick Walker. As that was the first time I came across a definition for neurodiversity which I actually understood and agreed with.

## **Defining Neurodiversity**

Walker explained the history of the Neurodiversity movement, he had researched the subject in-depth and concluded that:

Neurodiversity is the diversity of human brains and minds – the infinite variation in neurocognitive functioning within our species. [2]

Walker also describes "how an individual cannot have a neurodiversity. That if someone's neurology diverges significantly from the typical majority, the correct term to use for them is neurodivergent."

Walker's definition of neurodiversity made sense to me, it showed that autism, dyslexia, Tourette's syndrome, and other similar neurological developmental conditions were naturally forming variations within the human species and those of us with those developmental neurological brain-types were simply neurodivergent. We weren't broken or wrong, just different and thus had very different needs from most.

Understanding the terms *neurodiversity* and *neurodivergent* myself was only half the battle. I still had the problem that I wrote in person-first language, "person with autism," and I still used medical language to describe our differences—in terms of deficits and impairments. It was again the work of Walker who helped me understand why I struggled to convey a positive message regarding my own neurology.

In another article written by Nick Walker they state:

When it comes to human neurodiversity, the dominant paradigm in the world today is what I refer to as the pathology paradigm. The long-term well-being and empowerment of Autistics and members of other neurological minority groups hinges upon our ability to create a paradigm shift – a shift from the pathology paradigm to the neurodiversity paradigm. Such a shift must happen internally, within the consciousness of individuals, and must also be propagated in the cultures in which we live. [3]

In my early blogs I had followed the pathology paradigm, defining our differences by deficits and impairments. After reading the work of Nick Walker I got it. The pathology paradigm relied on a medical model, a system based on our (observable) presenting behaviors and which used a tick box diagnostic system, depending on whether our issues are mainly related to one cluster of ND-presenting difficulties or another. Having become an active member of quite a few online ND groups it seemed that the "main" diagnosis we got depended on the specialist we were first sent to in order to have our neurological differences diagnosed. I found that most of the group members in all the separate, segregated groups had co-occurring conditions and overlapping qualities. One diagnosis alone could not seem to define anyone's particular developmental history or help them find strategies suitable for their personal profiles.

In the UK all developmental ND conditions are usually diagnosed and assessed by different specialists. Each specialist, be they a psychiatrist, educational psychologist, speech and language therapist, occupational therapist, or other, assesses each condition in isolation. Their knowledge and understanding of neurodiversity varies, and as a result we are not often sent for follow-on assessments for other presenting ND differences.

My mission had been to find out as much as I could about the different types of neurological development but I soon discovered that if you have multiple diagnoses you have to join multiple charities and groups to gain information relevant to you. I had by this point joined three leading charities and at least twenty different Facebook groups. I wanted information relevant to me in regards to my own dyslexia, dyspraxia/DCD, and autism which I had now been put on the assessment path for. It's a maze just trying to find others who have traveled your path but through the internet I was finding them, and they were finding me.

I stopped blogging for quite some time after discovering the work of Nick Walker, as I tried to research more on the topic of neurodiversity and the many different types of developmental neurodivergent conditions but it was also around this time I joined Autistic UK (https://autisticuk.org/), the leading autism organization in the UK that is run by, and for, autistic people. Autistic UK was engaged in the wider ND movement beyond autism. Although its main focus was in autistic rights, it was inclusive of all the other conditions, whereas most organizations would only deal with the one condition mentioned in their name. Autistic UK would look at the whole person and the many different ways they might function to ensure all their human needs were being taken into account. This was the main reason I wanted to join Autistic UK, as I wanted to find one organization who were keeping informed about issues affecting all ND groups.

By 2015 I had finally been diagnosed as being on the autism spectrum myself. I was by now a prominent and active member within many of the segregated ND online groups, sharing my blogs with each group separately. My business was not very successful in monetary terms but it was highly successful for my self-esteem, as I received comments and messages daily from grateful readers. I had just been shortlisted for the National Diversity Awards as a Positive Role Model for people with disabilities and it was at this point that I realized I needed to do more for the communities than just post top tip guides and opinion pieces on Facebook.

#### **From Dyslexia to Autism—Silencing Voices**

Talking about my autism diagnosis had different consequences to talking about my other ND differences. Autism was being seen differently to the other neurodevelopmental diagnoses. I had always referred to myself as being "dyslexic" but when I referred to myself as being "autistic" I was told off by parents and professionals as they felt it was insulting to put the condition before the person. Whereas I could talk positively about dyslexia, when I tried to do the same with autism I was being told that I was only a "self "-advocate and was nothing like their child. I was seen as an inspiration to the dyslexic and dyspraxic community but was shunned within the autism community despite being popular among the actually autistic group members.

In my eyes my autism was just a part of my individual brain wiring, no different from my dyslexia or DCD; it just ticked different boxes. There were many carers, parents, and others who worked with autistic people who told me that I had no right to speak on autism because their experience was of working with or raising autistic children who were also nonverbal or learning disabled.

I soon discovered how hostile the world is toward autistics and realized that our voices are often silenced by people whose opinions seem to hold more weight within society. I also began to realize why the autistic audience had been so hard to please.

I made many friends within the adult autistic online community as we all banded together to stop the hate. I had discovered that conditions like ADHD and autism were not seen as favorably as dyslexia, and hardly anyone had even heard of dyspraxia. Despite all these differences being natural forms of neurological development, it seemed as though autistics and ADHDers were being talked over and denied the right to shape their own futures, while dyspraxics remained invisible.

I had a newfound fame within the internet-based ND groups because of my blogs and I had the ability to reach hundreds of people. I knew I needed to do something more.

## **The Role that Shaped My Actions**

In 2002 I had been elected to local government as a Liberal Democrat Councilor and had been able to be part of the process for achieving positive change, albeit at a local level. I saw firsthand how long projects can take from conception to completion when they are done properly. During my time as a councilor, I sat on a number of council committees, and management boards for a number of external organizations. I worked with the police and local communities and set up a number of resident groups. I had gained valuable insight into how to give residents a voice and I wanted to help get these groups a voice.

I couldn't help but wonder whether I would have been elected back then had I known I was autistic and had I disclosed that, but that is a question for another day. The experience I took with me from having been an equal and active member of many forums meant I knew how to speak to the people at the top. Those in political office can really make a difference to our lives, but by 2015 I had no political allegiance of my own so I felt free to contact anyone and everyone that I thought would listen, no matter what party they belonged to.

## **The Advocates Who Inspired Me**

It seemed to me that every day more recently diagnosed dyslexic, dyspraxic, and autistic adults were turning from using the internet to research their own neurological profile, to advocating for others who encountered similar barriers based on their neurology. From there some are unwittingly becoming active frontline campaigners for neurodivergent rights. When I was blogging for the dyslexic and DCD online community I worked with advocates like Sarah Chapman, owner of Operation Diversity (https:// operationdiversityacademy.co.uk/). Sarah champions neurodivergent talents and works hard to create a greater awareness of all developmental neurodivergent differences through her social enterprise.

I also worked with a number of dyspraxic advocates but by far the largest cohort of advocates was from within the autistic community. This seemed to me to be because dyslexic adults were allowed to talk about dyslexia even if they never mentioned any negative sides to it. For example, here in the UK we have the business leader Sir Richard Branson, who speaks openly about his dyslexia and how it helped him achieve greatness in his field. Richard Branson is an inspiration to many dyslexics, but it's harder to find autistic people who can talk about their experience of autism without others who claim to be part of the "autism" community shouting them down or pointing out that the individual speaking cannot or does not speak for their children who are in their views more seriously affected.

There seemed to be a barrier to actually autistic people standing up and talking about the issues of importance to the autistic community. We were not referred to as autism advocates, but as "self "-advocates; denied an opportunity to speak on topics of importance to us; and more often than not, denied payment for delivering talks. There seemed to be two communities at odds with each other where the *autism community* spoke over the voices of the *actually autistic community*. This injustice meant that autistic life coaches, bloggers, and advocates were used to being dismissed and at times attacked simply on the grounds of their autism being different to someone else's, but there were also more serious issues affecting the autistic community.

Through my online work I was introduced to individuals like Emma Dalmayne, the founder of Autistic Inclusive Meets (https:// autisticinclusivemeets.com/), who has taken on the battle against quack "cures" from individuals who claim they can help children "recover" from, or be completely "cured" of their autism. These people pray on vulnerable parents who do not understand autism and expose the autistic children and adults to abusive practices, such as drinking bleach in the form of MMS. Emma Dalmayne has led the fight to introduce specific legislation to prevent these types of abusive practices from being sold and used in the UK. Working with individuals like Emma also inspired me to do more than just blog.

Internet-based groups like The Autistic Cooperative founded by Kieran Rose (www.theautisticadvocate.com) have links with autistic campaigners based all around the world. Neurodivergent community members are now finding each other through groups like this, supporting and teaching each other about how to campaign more effectively.

Many of these groups were being formed by autistic campaigners who were also multiply ND, so they were inclusive of members with other related conditions. A network of community leaders was forming on the internet where group leaders were trying to allow neurodivergent voices a safe space to talk. I saw and heard of many injustices through these groups, so I wanted to do something positive. Belonging to all the different ND groups guided my hand regarding how to take my activism out into the real world. I was focused on doing something that would have lasting positive effects for all our people so listening to who group members were talking about was essential to me.

In September of 2015, there had been a shuffle in leadership in the political parties and suddenly many in the ND groups were talking about wanting to reach out to one person. That person was Jeremy Corbyn Member of Parliament (MP), the newly elected Leader of the Labour Party (then and at the time of writing in early 2019, the main opposition party in the UK). In the autumn of 2015 individuals from all the ND groups were talking about how Corbyn seemed different, how if anyone was going to understand our plight it would be him. This intrigued me as it was coming from people who claimed to have lost faith in our political system, from supporters of other political parties as well as from Labour supporters. Jeremy Corbyn seemed to be appealing to many within the different ND communities, because he seemed to be approaching politics differently, so I addressed an open letter to him.

In the open letter I spoke about the emergence of an online-based neurodivergent community and stated that:

Although we are isolated within our geographical communities we have found others like us and formed huge communities on the internet.We gain support from each other and find ways to overcome hurdles together. [4]

I congratulated Jeremy Corbyn for his appointment of a Shadow Minister for Mental Health and asked:

Jeremy Corbyn, you have created a Minister for Mental Health and I applaud you for that, it truly is an immensely important post in this era. **Can we ask that you also consider appointing a Minister for Neuro-Diversity to work closely with the Minister for Mental Health?** We are in need of political representation. [4]

An open letter signed by just one person is just a letter, from one person. I wanted to ensure I had the message right and that each of the different ND communities backed my call for the creation for a Shadow Minister for Neurodiversity.

The open letter received hundreds of comments in support in every ND group I shared it in. The ND community then seemed to take ownership of it and started sharing and retweeting it to their own contacts. It wasn't long before the letter had gone viral. I wanted as many comments as possible from members of the different neurodivergent communities before sending it to Jeremy Corbyn MP. It was essential to me that he sees it was the community speaking and not just me.

Between publishing the letter, coming out that I was autistic, my own general incompetence at promoting my paid work, the exploitative nature of the autism world, and my focus having turned to campaigning, I had not been able to make a success of my business.

I felt as though I was being forced to close my business because I could not make enough money, yet I was regularly being asked to attend autism events and speak for free. I remember posting something on my personal Facebook feed about how I was fed up of not having my time valued and how I would no longer support charities and organizations who claimed Autism in their title but who did not value our time enough to pay us.

## **The Butterfly Effect: Reaching the Right Person**

A Facebook friend commented on my post, saying I should meet her friend Janine Booth as she thought we had a lot in common. At this time I was still not very good at introducing myself to new people through the internet; my Facebook account was only used for my real-life family and friends. Yet I was already aware of Janine, having preordered her book "Autism Equality in the Workplace: Removing Barriers and Challenging Discrimination" [5]. I had also seen her website and enjoyed some of her poetry.

Janine was to my mind someone of note in the autistic community, she was a well-known author, activist, and campaigner whereas I was just a new internet blogger. I decided to private message Janine to introduce myself. I attached a copy of the open letter I had published so she knew a little about my own work and aspirations in the field.

Janine got straight back to me and asked that I forward the open letter to the Shadow Chancellor of the Exchequer, John McDonnell MP, as she felt he would be genuinely interested. The Shadow Chancellor is the direct opposition to the Government-appointed Chancellor of the Exchequer, the person responsible for the country's treasury. Although not currently in power having someone of this position on our side seemed essential if we wanted to move forward, I did as Janine suggested.

McDonnell responded to me, genuinely inquiring more about the request I had made in the open letter: the creation of a Shadow Minister for Neurodiversity. From there things moved very quickly. I was invited to meet John McDonnell at Portcullis House, in London to discuss my proposal further but because of my issues traveling I was not able to meet with him immediately. In the meantime Janine Booth had a book launch which John McDonnell was attending and after she asked him if he would support creating an autism manifesto, he announced his support for the creation of a Minister for Neurodiversity and an Autism Manifesto [6].

I was blown away by the announcement and was excited that I would soon be meeting with John McDonnell MP to discuss progressing matters. To be able to attend a meeting in London I needed my daughter to be my travel buddy. I had also asked Janine to come with me to the meeting for two reasons: one was because I was eternally grateful that she had pointed me in the direction of John McDonnell and secondly because I was scared to go in a building where I knew no one (although I had not physically met Janine by now we had corresponded a lot and I felt familiar with her).

## **Conceptualizing an Inclusive Manifesto—The Meeting**

Our communalfriend was right—we were certainly both on the same page; our responses to the questions from John McDonnell seemed to be exactly the same. During the meeting we discussed many areas of discrimination for the different ND communities we were attempting to represent. John McDonnell asked many questions. What he seemed to want to know was whether a Ministry for Neurodiversity would be enough to achieve the changes all the ND communities needed and whether an autism manifesto alone would be inclusive of all ND groups.

After talking about a variety of different issues in some depth we agreed that in reality much more was needed. We needed to combine my idea with Janine's and work toward achieving the best outcomes for all groups. We discussed how Government policies affect members of the ND community in every aspect of their lives, from health and education to housing, employment, and the judiciary system. By the time the meeting had come to a close, McDonnell had tasked Janine and myself to put together a team of ND individuals to start working on a fully inclusive manifesto to come back and put before him. McDonnell not only supported the "Nothing About Us Without Us" principle we desired, he put it front and center.

### **The Creation of the Manifesto—Steering Group Actions**

Janine and I then put together the Labour Party Autism/Neurodiversity (LPA/ND) Manifesto Steering Group, made up of ND activists, advocates, academics, and campaigners. Our remit was to go to all the ND communities and with the communities' help, design a truly inclusive manifesto to present back to McDonnell.

Over the next few months we worked together to design a manifesto which was felt could bring about the kind of structural changes needed to create a more ND inclusive society. The Steering Group launched the LPA/ND draft manifesto in September 2016, at a fringe event of the Labour Party Annual Conference. McDonnell attended this event and spoke about how he was supporting the creation of the LPA/ND manifesto. He also spoke about how he had first been introduced to the world of autism through his constituency work, and about how he had been challenged by Janine Booth to do something about autism in regards to the workplace at a trade union event he had attended some years ago. My impression was that McDonnell had been thrust into the autism world through his political work long before my open letter arrived in his inbox. You can view John McDonnell's speech online [7].

Austin Harney (LPA/ND steering group secretary), spoke about his own lived experience of autism and why he was fully supportive of the manifesto. He stated:

When I received the diagnosis, the authorities recommended that I was taken away from mainstream education against my wishes. The top professional medical experts stated that I had sub – normal intelligence that was unfit for mainstream society, education and employment. I was sent to an Autistic compound. [8]

Austin, like so many of us, was able to prove these doctors wrong and is now a civil servant as well as being a member of the national executive committee for its trade union, PCS (Public and Commercial Services) Union.

Janine Booth spoke of the impact Neurodiversity training was having in the workplace, how it was showing real benefits, not just to the ND staff but to other staff and clients too. She then outlined the core principles: the social model of disability, the neurodiversity approach, opposition to austerity, socialism, democracy, solidarity, and the Nothing About Us Without Us principles which had helped us construct the document we were setting out before the delegates. She then outlined the document in full [9].

After the launch, we created a Facebook Page (https://m.facebook.com/ LPANDmanifesto/) so that the segregated online communities could add their input easily through their Facebook accounts. Janine ran Neurodiversity training events and we attended meetings and ND events, so that we could between us all obtain more feedback from the many varied, segregated ND communities.

Joseph Redford had been involved in setting up or running many autistic community-building events prior to joining the LPA/ND Manifesto group. He had worked with Autscape, an event run for and by autistic people. Joseph had also worked on Autistic Pride in Hyde Park, an event which started in London and which in 2018 saw autistic people and their families attend Autistic Pride events in cities all over the country. Joseph was able to take the Manifesto and gather valuable feedback from many within the autistic community through these activities and events.

Annie Morris facilitated all our meetings and also set up and monitored the Neurodiversity Manifesto Website for the group (https:// neurodiversitymanifesto.com). We also were lucky to have noted academics available to the steering group. Dr. Damian Milton and Dr. Dinah Murray were able to help us research any controversial issues in more depth.

In 2017 the steering group was in the process of gathering feedback to ensure all issues had been considered in the draft document. We wanted to ensure we had not left any groups unrepresented and we wanted to do a good job. We were not due for a General Election in the UK until 2020 and we wanted to produce a document that was well-thought-out so the Labour Party would have no problems adopting it before the next General Election. But this all coincided with massive political change taking place in the UK as the vote to leave Europe had taken place in 2016 and the political landscape was changing. The Conservative Government changed its leadership and Theresa May was appointed the new Prime Minister. In June 2017 a snap General Election was called and we again found ourselves at the ballot boxes.

When the election was called the steering group collated all the information we had gathered. The draft manifesto was then adapted and submitted to McDonnell just before the official Labour Manifesto was itself published. All of us on the LPA/ND Manifesto steering group knew there was no time to have the full manifesto included in time for that election, but as McDonnell had seemed to understand our issues and had attended steering group meetings when he could, we hoped that some of our more general aims would have been brought up.

The official Labour Party Manifesto 2017, "For The Many Not The Few" [10], included some of the core principles requested in the draft A/ND manifesto. The Labour Party Manifesto made it clear that the Labour Party desired an autism-friendly UK, that they wanted to implement the social model of disability, and look to resolve disability issues created by lack of accommodations rather than expecting the change to come from the disabled person. It even mentioned neurodiversity.

In September 2017 we were ready to host the Autism/Neurodiversity event at the Labour Party Conference. A copy of the drafted manifesto was left on all the delegates chairs so they could refer to it throughout. A copy of this can be found online [11].

I Chaired this event, and had the pleasure of introducing McDonnell, who this time spoke of how proud he was of the work Janine and the whole of the steering group had put into creating the Manifesto and again stated his full support for it.

Emma Lewell-Buck MP, the only openly dyspraxic Member of Parliament then spoke about what it is like being a dyspraxic politician. Other politicians and members of the steering committee also spoke about how the Autism/Neurodiversity Manifesto would impact the different ND groups and how that could benefit society.

We had talks by dyslexics, autistics, dyspraxics, and a very vivid and powerful talk by Terry Laverty, a core member of the Steering Group, who spoke on the topic of ADHD. Terry spoke about what it is like having a mind that works so differently to most and the discrimination faced by ADHD adults.

The event was very well attended and support for the manifesto was unanimous. One of the comments from the delegates which stuck with me was that they had never been in a room with so many neurodivergent people in one place. It really was an amazing feeling to be in a room full of our actual peers.

#### **Where We Are Now—The Present**

In 2018 we ran another successful conference where we introduced our critical appendix on Applied Behavioral Analysis (ABA) which was also incredibly well received [12]. Shortly later Janine and myself reported back to John McDonnell MP, to present the final manifesto to him in detail [13]. John McDonnell fully supports the manifesto and is keen to see the whole document officially adopted by the Labour Party and has explained how we can now go through the right channels to get it approved by the National Executive.

#### **Launch of Neurodivergent Labour**

I learned through my time as a borough councilor that all projects take time: there is no guarantee that just because you start a project, you will still be there when it is approaching completion. Therefore, the best projects are the ones you can walk away from knowing that you have already got the ball rolling in the right direction.

I feel proud to know that if I walked away soon I would have left behind me a democratically formed organization who have pledged to promote the A/ND manifesto and to fight for the rights of neurodivergent people. I have faith in this organization being a force for positive change.

On February 9, 2019, I saw politics on the brink of a paradigm shift as it opened the door to neurodivergent voices. John McDonnell again spoke of his support for the work we had done and the ambitions we had to make the Party more accessible to us. As the Disability News Service later reported, John McDonnell said:

As I keep repeating, this is not about electing a group of MPs who will go off and do it for us. That will never work, it never has and it never will. This is about when we go into government, we all go into government, so we draft our manifesto, we secure commitments from the bulk of the Labour Party through the normal policy making process and then when we go into government, we all work on the detail of the implementation itself. [14]

Hearing McDonnell speak filled me with confidence. Knowing that it is no longer just individual voices trying to be heard, but a movement of people who are uniting under the Neurodivergent banner.

I am eternally grateful that my open letter to Jeremy Corbyn, MP, fell into the hands of Janine Booth. I'm so glad she had the political awareness to make it much bigger than it was, by getting it to the best person to read it, and for pushing for a manifesto. I am eternally grateful to John McDonnell for understanding the need to create a ND inclusive manifesto so we can all be supported, and for allowing us, the ND individuals, to lead throughout the process of inception, construction, and delivery.

I hope that other ND advocates are writing to people they think might help. Despite the internet trolls we have to contend with, there are actually a lot of good people out there and there are some amazing allies still to be made. It is amazing what a simple letter can lead to. My aim was to start a ball rolling, to start something that I could eventually walk away from knowing that the momentum alone would keep it going. I wanted to start a conversation that included us at all levels. What I hadn't realized at the time, was that hundreds of ND advocates are out there doing the exact same thing. One person at a time, perspectives are changing, and paradigms are shifting. As more and more advocates find each other and work together our voices are getting heard.

## **References**

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# **20**

## **From Protest to Taskforce**

**Dinah Murray**

The National Autistic Taskforce's (NAT) main focus is on autonomy and justice for people who don't use speech to meet their needs; that was also the main focus of the APANA story, and that is where the next stage of this narrative starts, as one of its key players is Virginia Bovell who was on the parliamentary advisory group that learnt about neuroleptics from Wen Lawson and myself. This section is about how the NAT came to be and what lessons can be learnt.

## **Autistic Influence on the Emergence of Autistica**

At that All-Party Parliamentary Group on Autism (APPGA) meeting mentioned above, and after it, my concession that in some cases at low doses

D. Murray (B) London, UK

some people find risperidone helpful was clearly *a vital step towards credibility* (though not liked by the APANA parents at the time). Virginia, founder of an applied behavioral analysis (ABA) school and achiever of British version nicey-nice ABA, was also concerned about eugenics, so a while later we met again to talk about that and I met her son Danny. Some years passed, then one day in 2008 she and I did a double take in the street and she asked me in for a cuppa (tea). We had a very pleasant chat and exchanged phone numbers. Despite our very different views of behaviourism, we had much common ground.

Just a week later I got a very disturbed phone call from Virginia. A new CEO of her school (Treehouse), unaware of their bad name had invited Bob Wright, founder of Autism Speaks, to launch a new series of annual lectures on autism. To many people it was already clear how distorted their deeply medical model of autism was, with its analogy to cancer as a problem to be wiped out as soon as possible, including by genetic intervention. So Treehouse needed help and we built on our common ground despite a difference of view that could have ruled that out.

The solution I proposed was to: establish a creative autistic presence; give autistic people a chance to say what people most need to hear about autism; have the widest possible exposure; rebalance the specific event to diminish Autism Speaks' impact. This created alliances and generated obligations. Treehouse gave me funding for a professional editor, for two-minute videos from the Autistic Self Advocacy Network (ASAN), members of my Posautive Youtube group, and Autscape (see Buckle, Chapter 8) members as well asfrom personal contacts.Two thousand *Something About Us* DVDs (*Something About Us* [1] were made and distributed—free and copyrightfree (now part of the exhibition at RightfulLives, www.rightfullives.net/ Community-of-Perspectives.html). At the event in London's City Hall, everyone including the visiting Wrights was asked to flap not clap. An autistic woman, Anya Ustaswewski, cogently responded, and an audience with many invited autistic people (see the videos at RightfulLives). There was a small demo outside with these signs (see Figs. 20.1 and 20.2).

Another result was that people were indebted to the autistic input and Virginia introduced me to key people who recognized the debt (I was not paid myself ). Those included Hilary Gilfoy of whom more below.

**Fig. 20.1** Anti-Autism Speaks Logo designed by Dinah Murray

**Fig. 20.2** Another Anti-Autism Speaks Logo circulating in 2008, anonymous

This event strengthened my standing as a reasonable person (not all may agree) again because I had conceded some ground myself, i.e. that the UK behaviorists were not themselves devil's spawn. The whole ghastly visit perhaps with a bit of help from our well-found critique—contributed to a painful and difficult process as the UK organization that had been paired with the US Autism Speaks severed the partnership and reinvented itself as the strictly British Autistica (which now has a Director of Science who is autistic himself ). I kept up good relations with Hilary Gilfoy in person over the next years as she seemed to me a fair-minded person who was going to some lengths to distance and separate her organization—funded by Dame Stephanie (Steve) Shirley in the UK—from the Americans.

## **Autistic Input into the National Autism Project**

A few more years passed and in 2014, Dame Steve, who had used her unexpected great wealth (see her autobiography, *Let It Go* [2]) to give very many millions of pounds toward fathoming what autism is all about, decided to commission the "National Autism Project" (NAP) to study whether anything useful had emerged from all these decades of autism practice and research, much of it funded by her.

Thus, in 2015 Ian Ragan and Elizabeth Vallance (from the original Autism Speaks UK) approached me to join the NAP Strategy Board. I felt honored, but it mattered to me that if I said yes I wouldn't just be there as "window dressing." As I explained, my experience as a trophy autistic person at the National Autistic Society had been recent and bruising. I also did some agonizing over the generous benefactor's past involvement with Autism Speaks and her own attitude to autism; but she had funded the first online autism conference, in 1999, to which I'd contributed with Mike Lesser and the Webautism course which I helped develop and taught on at Birmingham University—and Autistica was being transformed. Also, they agreed to everything I asked for.

I asked for: communication support for attending Board meetings (in the shape of Damian Milton), as I knew my ability to speak up in a timely manner was limited at best; I was also concerned that I needed my own 'sounding board' and input from beyond my own limited perspective. Happily both these ideas were accepted and I constructed a strong advisory panel with a wide range of both academic and practical knowhow, and I was able to come to Strategy Board meetings with the unfailingly articulate (and like-minded) Damian. Hilary Gilfoy, who had guided Autistica's disentanglement from Autism Speaks, was not technically on the Board, but took excellent minutes at Board meetings and was perceived as a supportive presence by both Damian and myself (and, I think, by her old friend Dame Steve) owing to her calm friendliness.

Having someone as steady as Damian by my side, who also had a fantastic grasp of all the key issues, transformed my capacity to be of some use at the meetings. Eventually everyone was treating us both as equal Board members, and he was contributing freely on the spot in a way I cannot perform myself.There were few occasions when our views diverged, which obviously helped—and at the final Board meeting Damian couldn't attend and I managed to contribute quite fluently myself as I had learnt to trust the people there. How did that happen?

It didn't start too well. A lot of work had been done and decisions taken before the first Board meeting took place—that included drawing up a list of Experts, all of them professionals from academics to psychiatrists to charity bods. I queried why the Autistic Advisory Panel (AAP), who I knew to be deeply knowledgeable in the field, did not also count as "experts." I went and met and talked to the report researchers Professor Knapp and postgraduate Valentina Iemmi quite early on, and I think opened their eyes to how much disability can be created by a hostile environment and what that might mean vis-à-vis autism. They appeared genuinely interested. Even so, by the summer of 2015 I was beginning to think of resigning because of the way the AAP members were lumped together as "Dinah's panel" and their individual great expertise disregarded. However, Damian, AAP member Catriona Stewart, and I had a chat at Autscape and Catriona argued for the Panel to have a face-to-face meeting, which we later did, with the NAP Project Leader, the NAP Chair, and Hilary in attendance. That was the beginning of the real listening.

Gradually all the people on the Panel became distinct and valued contributors to the NAP. The interesting and open-minded other members of the Strategy Board began to hear favorable things about us. Two of the AAP members were turned from pawns to queens and added to the Experts list—Drs Yo Dunn and Catriona Stewart. Cat was their Scottish specialist and Yo was far the most effective and knowledgeable expert they had when it came to calling the Government out on its own laws. In effect she became the NAP's warhead, wheeled into many discussions with senior civil servants to blow them away with her detailed and accurate legal knowledge.

By the time the Project report, *The Autism Dividend* , was launched in early 2017, the large contribution of members of the Panel as well as our "experts" was being explicitly recognized. The report was repeatedly revised and improved by our critical input—and saved from some serious failings—which resulted in Damian and myself being honored at the report launch in a House of Lords venue, as "Productive Irritants" by its lead author, Martin Knapp. Some fundamental differences from his earlier report on "the cost of autism" were that the burden/disease concept had been replaced by explicit recognition of autistic potential and of the varied barriers that prevent it from being realized; it also highlighted a very poor evidence base for most practice, resulting from widespread very low research standards (see autistic researcher Michelle Dawson on Twitter, @autismcrisis, for much more about those).

At that year's Autscape (see Buckle, Chapter 8), five members of the AAP were there, and the National Autism Project's willingness to listen and take us seriously was feted and rejoiced in: the final report is much admired. We are all proud to have contributed to its excellence. Widely seen as the highlight of the 2017 Autscape, Yo Dunn gave a stunning, passionate talk about what she called "The Other Half " and what is more fluent autistic people can and should do about the vast numbers of autistic people who are not articulate but depend on frequent or full-time support. Privately we discussed the idea that if some sort of future for the AAP was going to emerge, its point could be to focus on the Other Half.

In parallel with these discussions, unknown to us, Dame Steve was having some thoughts of her own. Those led her to entrust me with the generous sum of £100,000 to fund a continuation and transformation of the NAP's AAP. She was clearly pleased we chose to focus on people, like her late son, Giles, who need the most communication support. The new body was named the NAT and acquired the strapline: Bolder Voices— Better Practice.

## **The National Autistic Taskforce**

With Damian Milton as project leader, we conceived the Taskforce's main practical aim to be to turn more of the promises encoded in weak and toothless legislation into realities, for people who are poorly placed even to recognize let alone defend their own rights and interests and whose parents are often cut out of discussions when their offspring are teenagers.

We are identifying specific targets and crucial steps along the way, as well as potential obstacles and ways to get around them. We have small focused working groups (GNATs, or Groups of the NAT) on changing practice in the target areas. We are also building up a wider network of autistic individuals and groups across the British Isles so we can draw on a wide range of expertise with as broad and well-informed views as possible. Thanks to this terrific bunch of committed and knowledgeable people, we have been already able to interact constructively with agents of government and other stakeholders, and thanks to Yo Dunn in particular, theTaskforce has drafted several well-supported and closely argued responses to relevant government consultations on behalf of NAT (see nationalautistictaskforce. org) and created the NAT Independent Guide [3].

We think we are well-placed to be seen as carrying some weight, with an executive made up of Kabie Brook, Leneh Buckle, Yo Dunn, and Damian Milton as project leader; and the NAT's history and status mean we have some enviable introductions and contacts. We think our connection with the National Autism Project means that, from an establishment position, we are seen from the start as both credible and significant. Big charities that say they are speaking for autistic people always have their own survival as top priority.

#### **Lessons Learned**