1990s

Jim Sinclair met with penpals Xenia Grant and Donna Williams during a book tour of Donna’s Nobody, Nowhere. They spent time talking to Rita and Doyle, the parents of an autistic kid, and then spent time alone, where they felt like they had found people from the same planet after feeling stranded all their lives. Their penpal list was already maintained by a parent-run organization. They decided to start their own autism organization, and called it Autism Network International. They also started a newsletter called Our Voice. ANI's website can be accessed here.

Autism National Committee, AutCom for short, is an organization formed in 1990 by Gunnar Dybwad. They have a history of working collaboratively with autistic people. On their website, they claim to be the first autism advocacy organization dedicated to "Social Justice for All Autistics through a shared vision of commitment and positive approaches".

The 1993 International Autism Conference was held in Toronto, a city in Ontario, Canada. Jim delivered the speech “Don’t Mourn For Us”, which challenged the common notion of grief that parents felt when their kids got an autism diagnosis. Jim applied to have this speech at both Autism Society of America and Canada’s conferences, though ASA’s president, Ruth Sullivan, gave special instruction to the planning committee to not accept the application. It was accepted for the international conference, though. Jim’s speech drew lots more attention towards ANI. It was also where the term cousin originated, as a way of describing someone who wasn’t autistic, but had a similar disability. This happened after an interaction between Xenia and a man with hydrocephalus. Xenia warmly proclaimed him a cousin, and the term stuck within ANI.

Autistic people started communicating with each other over autism email listservs more often after the 1993 ASC conference. The neurotypical people who ran the listservs started complaining that bandwidth was being wasted on these conversations. This came to a head in an incident known as “The Snore Wars”, where Jim had a friendly conversation with someone about his snoring at a conference on the St. John’s Autism listserv, known by the nickname by some as “ADH-L: Academic Dickheads List”. Jim decided to form a separate private listserv called ANI-L that mainly included autistic people, but also welcomed cousins and parents. It had three main channels- ACs (Autistics and Cousins), Parent’s Auxiliary (PA), and Virtual Party (VP). ANI-L was later moved to Syracuse University’s servers in 1996. Those who were part of the list and still have login information for their email can access ANI-L's archives here. 

An organization known as More Abled Autistic People, led by parents of “high functioning autistics”, approached ANI about planning an entire wing of their 1995 conference that would be led by autistic people. They spent time devising this in ANI-L. Nearly all of the sessions devised were led by autistic people, and covered topics such as supported living, autistic community, the political implications of medical research, asexuality, and a panel discussion about what autism meant to them. Three key sticking points came from this conference-the use of color communication badges, crash rooms, and guidelines for neurotypicals. There was conflict with the parent organizers, who tried to exclude “low-functioning” autistic people from attending, though at least two did regardless. The MAAP president phoned an ANI member after the conference to berate them for a post they made privately on ANI-L. ANI’s contributions were barely recognized by the organizers of the conference.They decided to form their own conference.

Independent Living on the Autism Spectrum (InLv) was an email list started by Martijn Dekker as an alternative to ANI-L. It was a private list made with a dial-up Bulletin Board System (BBS).  It had the topics "advocacy", "brain", "self-care", "employment", "social", and "family".  Many of the discussions on this list led to the publication of work that described key concepts in the early development of the Neurodiversity Movement. 

The first annual Autreat was held at the 4-H center in Canandaigua, New York. Half of the presenters were autistic, while the other half were non-autistic. The color communication badges previously had just the green and yellow options, but red was added. About fifty people in total attended, mostly from the United States, but with a few attendees from Canada, Europe, Israel, and Japan. Autreat was held at this site every year until 2000. 

Harvey Blume, a journalist for the New York Times, published an article about autistic people forming online activist spaces, forming the idea that autism and other brain-based disabilities were a natural part of the human population and people with those disabilities had valuable things to contribute to society. Blume described it as "neurological pluralism". Others, including those on the InLv email list, used "neurological diversity" and similar variants of the term to describe the same concept.

Judy Singer published her master’s thesis in sociology titled “Odd People In: The Birth of Community amongst people on the Autism Spectrum. A personal exploration based on neurological diversity”. This introduced the idea of neurodiversity to academia. This is the first known instance of neurodiversity being used in its abbreviated form. However, Singer described it as a concept that only applied to autistic people who were high-functioning and had an Asperger's diagnosis. The paper was cited in a book called Disability Discourse under an essay, also written by Singer, called "Why Can't You Be Normal for Once in your Life?" in 1999. Neurodiversity is a term and concept devised of by many different people in the 1990s. Neither the term nor the concept of neurodiversity ever belonged to a single person.  

A website known as Autistics.org was started. It was mostly maintained by Laura Tisoncik, Mel Baggs, and Phil Schwarz. It was the first political autism website led by autistic people. There was plenty of satire, though it was also an important organizing space for the early neurodiversity movement. It had the Autism Resource Library, which featured selected essays from autistic people. It also had pins for the Autism Liberation Front, which was a take on the Gay Liberation Front. It is the earliest recorded instance of opposition to the puzzle piece as a symbol for autism, with pins that had the slogan “I am not a puzzle. I am a person”.

You can access most of what was in the final iteration of Autistics.org before its servers went down here. You can find an older version of the site here. 

#AutFriends can be found here 

UK-based advocate Dinah Murray and her colleagues started an organization called Autistic People Against Neuroleptic Abuse (APANA). It was started to help combat the overuse of drugs given to people with intellectual disabilities. They focused on three cases of autistic adults in institutions being overprescribed. They wanted to end routine prescribing of neuroleptics for ASD, reduce current neuroleptic prescribing for all people with learning disabilities, raise awareness of side-effects and withdrawal effects, and raise awareness of the non-psychotic nature of autism

A chapter of Autistic Community and Neurodiversity Movement also goes into detail on this organization.

Jim Sinclair published the essay “Why I Dislike Person-First Language”. This captured the sentiment a lot of autistic people within autistic spaces were feeling about being referred to as “people with autism”. Identity-first language has been the preference of the Neurodiversity Movement since the beginning, contrary to the person-first preference of the self-advocacy movement, but similarly to the Deaf and Blind communities. 

alt.support.autism was an open membership newsgroup. It was owned by Denise DeGraf, aka Mugsy, and started by Martijn Dekker. The list is still open, but inactive. Past conversations that happened in the newsgroup are still publicly available. 

Parents of autistic children who were restrained and given aversive treatments in early intervention banded together to create a website that detailed their eye-witnesses of it. They also talked about the abuse their kids faced in psychiatric facilities. The site had an autism division, with autism specific stories, and a mental health division for stories about psychiatric facilities, which were not limited to autistic people. 

Kassiane Asasumasu came up with the word “neurodivergent” to describe anyone whose neurology differed from what was considered normal. This is meant to be an all-encompassing term for any type of neurological disability. Kassiane came up with the term on About.com. 

The Autism Truth and Justice Commission was a website made to document cases of abuse and bullying of autistic people around the world and propose practical solutions. They were part of Autistic.org's network. Their servers went up in 2000 and down in 2005.