Autism spectrum disorder is a lifelong condition and there is no cure, but the right therapy or intervention can help the child learn the necessary skills to improve the quality of their life. Since ASD can be detected as early as when the child is between 12-18 months old, intervention can be provided quite early for a better outcome.
The most effective intervention for ASD is interdisciplinary, structured, and specialized to help the child meet their communication, social and behavioural milestones. Children with ASD can make significant progress if the intervention received is structured, intensive and consistent.
Asperger’s has always been part of the human community, standing apart, quietly making the world that mocks and shuns them, a better place. Neurodiverse people with physical and cognitive differences are systemically disabled, excluded, and demonized by society. Handicapping the limitations of disability depends either on how well the environment is adapted to the range of people who use it or on the opportunities they have had to learn to cope with it, or both. Being autistic does not mean being devoid of empathy, and the spectrum spans a broad range of intellectual abilities.
Psychologists, physicians, educators, and parents remain largely uneducated and uninformed regarding high-functioning autism and Asperger’s Syndrome, particularly in girls and women, and the person is often misdiagnosed. Asperger’s syndrome has probably been an important and valuable characteristic of our species throughout evolution.
Neurodiversity advocates propose that instead of viewing this gift as an error of nature – a puzzle to be solved and eliminated with techniques like prenatal testing and selective abortion – society should regard it a valuable part of humanity’s genetic legacy while ameliorating the aspects of autism that can be profoundly disabling without adequate forms of support. Instead of investing millions of dollars a year to uncover the causes of autism in the future, we should be helping autistic people and their families live happier, healthier, more productive, and more secure lives in the present.
Imagine if society had put off the issue of civil rights until the genetics of race were sorted out, or denied wheelchair users access to public buildings while insisting that someday, with the help of science, everyone will be able to walk. Viewed as a form of disability that is relatively common rather than as a baffling enigma, autism is not so baffling after all. Designing appropriate forms of support and accommodation is not beyond our capabilities as a society, as the history of the disability movement proves. But first, we have to learn to think more intelligently about people who think differently.
The Digital World
The main reason why the Internet was able to transform the world in a single generation is that it was specifically built to be “platform agnostic.” The internet doesn’t care if your home computer or mobile device is running Windows, Linux, or the latest version of Apple’s IOS. Its protocols and standards were designed to work with them all to maximize the potential for innovation at the edges.
In recent years, a growing alliance of autistic self-advocates, parents, and educators who have embraced the concept of neurodiversity have suggested several innovations that could provide the foundation for an open world designed to work with a broad range of human operating systems.
The physical layout of such a world would offer a variety of sensory-friendly environments based on principles developed in autistic spaces like Autreat. An inclusive school, for example, would feature designated quiet areas where a student who felt temporarily overwhelmed could avoid a meltdown. In classrooms, distracting sensory input – such as the buzzing of fluorescent lights – would be kept to a minimum. Students would also be allowed to customize their personal sensory space by wearing noise-reducing headphones, sunglasses to avoid glare, and other easily affordable and minimally disruptive accommodations.
ENVIRONMENT and CULTURE
The social environment in which the child with Asperger’s grows up has a great effect on how well he will adapt. In the distant past, some Asperger ’s-type people may have been regarded as shamans, holy men, diviners, or simply oddities. In the days before calculators, Jerry Newport’s mathematical abilities would have been greatly appreciated by many employers.
Being a child of the 1950s may have helped Temple Grandin because the structured lifestyle taught her social rules. Since she didn’t have much innate social instinct to guide her, she had to rely on logic to learn how to behave. Fortunately, she was brought up in an environment where she was taught very clear standards of right and wrong. A person with Asperger’s may in some ways be more affected by the environment than a person with all the normal emotional wiring. If he is brought up in a nurturing environment where there are opportunities for excelling at his talents, he will flourish. If he is brought up in an environment with no such opportunity, he may end up a disillusioned loner, mad at the world.
Culture-bound syndromes. Why do American women get anorexia nervosa but women in indigenous cultures do not? Is it possible that around the core of biological illness, a large superstructure of behaviours and moods had been created by society itself? Extremes in biological variation can manifest themselves in different ways in different environments.
Genetically, people can have either high or low anxiety; the nervous system designed to be vigilant for danger may have high anxiety. Depending upon the environment, an urban person with high anxiety might become a hypochondriac, but in a native society, he might become a great lookout who could spot dangerous animals. Perhaps the low-anxiety (low-fear) person might be a criminal in one environment and a courageous war hero in another.
Dayak farmers on the edge of the jungle in Malaysia have “latahs.” Known in the West as “hyper startle syndrome,” latah occurs mainly in elderly women. When they are startled by sudden noises or other surprises, they go into a trance, utter obscenities, and imitate any silly behaviour they see or are asked to do—for example, hopping up and down like a grasshopper. They do not mind being latahs, and no attempt is made to cure them. The Dayaks live in a decorous culture, and playing games with latahs provides an outlet for their intense emotions.
The 1994 DSM-IV, the first to include Asperger’s, also included latah, calling it a culture-bound syndrome: that is, a mental disorder that appears to be created by purely cultural rather than pathological forces. Latah may have a biological basis and may be either psychomotor epilepsy or a form of Tourette’s syndrome. The biology may be similar, but culture may determine how it is expressed.
There is a complex interaction between biology and the environment. For example, a 2002 study by Avshalom Caspi and his colleagues at King’s College in London concluded that genetic factors may help explain why some children who are mistreated grow up to victimize others, while other children, raised in the same bad environment, do not. Abused children with a gene that directs a high level of expression for a particular brain enzyme known as monoamine oxidase A (MAOA) were less likely to become antisocial and violent. This suggests that both groups of children if raised in a nurturing environment, would be likely to become good citizens, but if abused as children, those with one genotype were more likely to become good citizens than those with a different genotype. Both genes and the environment affect what we become.
How well an adult with Asperger’s will fit into society will be partially determined by access to opportunities as a child to develop and use his talents. As the idea of genius has become increasingly discredited in the wider culture, it has simultaneously become increasingly medicalized. Talking to American graduate students, one often hears the casual remark: ‘There’s no such thing as genius; great men don’t exist…’ It’s a sentiment that appeals to American notions of equality. It is equality that is [viewed as] normal, not genius.
EDUCATION
Find individualized approaches to education that would enable these children to make the most of their innate gifts while ensuring that they have the resources to cope with the challenges of their disabilities. What is the best teaching method for them? Teach these children how to put their autistic intelligence to work. Asperger began calling them “little professors”.
More emphasis should be placed on early childhood education when a child’s learning style first comes to light because a child’s experiences in school can set him or her up for success or failure in later life. Too often, the individual program focuses exclusively on addressing a child’s deficits at the expense of focusing on strengths that teachers could employ to engage the child’s interests and help build confidence.
Early learning is fundamentally a social process during which the architecture of the developing brain is constructed from emotional connections with trusted caregivers and friends. Many studies have the value of face-to-face, empathetic teaching styles for language development in infants and young children.
Children want to figure out how things work, rather than art, they study biology, chemistry, and physics. The guidance of these children requires a high degree of effort and concentration. In short, the teacher has to become somehow autistic.
Academic outcomes in later elementary school years are built on a foundation of authentic conversational language and the nurturing of meaningful relationships in early childhood.
Trying to leverage peer pressure in the classroom doesn’t work, because they were already alienated from their peers. Flattery is equally ineffective, as they were curiously immune to it. What they did care passionately about was logic. They had an innate desire – almost a compulsion – to seek out universal laws and objective principles.
The primary motivation for learning in typical children was their emotional identification with the teacher. Autistic children sought to learn for their own sake in the course of pursuing their passionate interests. They didn’t care what their teachers thought about them; they just wanted to know the facts. The best teachers for these children were willing to meet the children halfway, instead of insisting that they act like everybody else.
Many autistic people benefit from hands-on learning. The rise of the Maker movement – which hosts events called Maker Faires, where garage inventors of all ages are encouraged to show off their latest projects – has been a boon to young people on the spectrum.
Temple Grandin made several suggestions about raising children from her own experience. “Parents get so worried about the deficits that they don’t build up the strengths, but those skills could turn into a job,” “These kids often have uneven skills. We need to be a lot more flexible about things. Don’t hold these math geniuses back. You’re going to have to give them special ed in reading because that tends to be the pattern, but let them go ahead in math.”
Parents need help through the process of having their children evaluated and developing an individualized education program. Rigid academic and social expectations could wind up stifling a mind that, while it might struggle to conjugate a verb, could one day take us to distant stars.
A label can also impact parental expectations, a major source of therapeutic momentum for children. A parent with a diagnosed autistic child might be reluctant to teach practical social skills that are outside the child’s comfort zone, such as ordering food at a lunch counter. You have to stretch these kids just outside their comfort zone to help them develop. Give them choices of “stretching” activities such as you can do Boy Scouts or robotics.
“It hurts because they don’t have enough expectations for the kids. I see too many kids who are smart and did well in school, but they’re not getting a job because when they were young, they didn’t learn any work skills,” Grandin said. “They’ve got no life skills. The parents think, ‘Oh, poor Tommy. He has autism so he doesn’t have to learn things like shopping.”
Grandin was raised by her mother in the 1950s, a time when social skills were “pounded into every single child,” she said. “Children in my generation, when they were teenagers, had jobs and learned how to work. I cleaned horse stalls. When I was 8 years old, my mother made me be a party hostess – shake hands, take coats, etc. In the 1950s, social skills were taught in a much more rigid way so kids who were mildly autistic were forced to learn them. It hurts the autistic much more than it does the normal kids to not have these skills formally taught.”
“In my generation, paper routes taught important working skills. Today, parents should set up jobs a child can do in the neighborhood such as walking dogs for the neighbors. Younger children can do volunteer jobs outside the home such as being an usher at a house of worship or community center. This will teach both discipline and responsibility. It improved my self-esteem to be recognized for doing a job well. The skills that people with autism bring to the table should be nurtured for their benefit and society,” Grandin said. “
Sticking to a routine can be very important for people with Asperger’s syndrome. A routine can help manage the anxiety of Aspies. They may become greatly distressed and anxious when their schedule changes. New situations can be frightening.
Thankfully, much of our world runs on tight schedules. If you suspect your child may have Asperger’s syndrome, putting them on a tight schedule may be an effective way to help manage some of their symptoms.
The advent of digital technology has opened new horizons in education for adapting teaching materials to suit learners with a diverse range of learning styles. Some students learn best by reading, while others benefit most from oral instruction; with tablet devices and customizable software, the same core curriculum can support both. The leader in this area has been the National Centre on Universal Design for Learning which offers free guidelines and resources to help teachers adapt their curricula for students with learning differences.
Many Asperger’s people turn their youthful obsessions with science fiction into a career in science. For many people on the spectrum in the years when they were still invisible to medicine, science fiction fandom provided a community where they finally felt like savvy natives after years of being bullied and abused by their peers for seeming naive, awkward, and clueless.
Another community that enabled autistic people to make the most of their natural strengths was amateur radio. By routing around the face-to-face interactions they found so daunting, even people who found it nearly impossible to communicate through speech were able to reach out to kindred spirits, find potential mentors, and gain the skills and confidence they needed to become productive members of society.
Nature. Being exposed to nature with nature-based experiences reduces the frequency of ADHD symptoms in both the immediate and longer terms. Yet despite what we know about nature’s positive impact on mental health, attention span, academic outcomes, physical fitness, and self-regulation, outdoor time is too often seen as a quirky and marginal add-on, rather than as central to the learning process itself. Nowadays, a host of new obstacles stand in the way: perceptions about lack of neighbourhood safety, access to outdoor spaces, teacher know-how, adult buy-in, and concerns about extreme climate and air quality. We shouldn’t be surprised when teaching approaches that don’t serve all children well in traditional in-person classrooms are even less successful when applied online or to outdoor classrooms. The focus should be on achievement that is not narrowly academic – physical challenges, acts of service, and the development of self-regulation, independence and friendship. Academic goals would also be part of the program, but not take precedence.
The Silicon Syndrome. Autism and its milder cousin, Asperger’s syndrome, are surging among children in Silicon Valley. A curious synchronicity was that accomplished families in Silicon Valley had children with what was considered a rare neurological disorder. It has been found that this mysterious rise in diagnosis was not restricted to Silicon Valley – it was happening all over the world.
The culture of Silicon Valley began adapting to the presence of a high concentration of people with autistic traits even before the term Asperger’s syndrome was invented.
Jean Hollands, a therapist wrote The Silicon Syndrome, about navigating “high-tech relationships” with a distinctive breed of intensely driven “sci-tech” men who loved to tinker with machines, were slow to pick up on emotional cues, had few if any close friends outside their professional circles, approached life in a rigorously logical and literal fashion and addressed problems in intimate relationships by “seeking data.” She received letters from the wives of engineers, coders, and math and physics professors all over the world. Significantly more engineers, scientists, and accountants than average in the family history of children with autism.
BEHAVIORAL APPROACHES
Applied Behavior Analysis (ABA): ABA works mainly on reducing problem behaviours in children with autism. It looks at behaviour in a three-step process: instruction, behaviour, and consequence. This method uses rewards or reinforcement to help the child learn and maintain desired behaviours and skills. The child’s progress is tracked and measured. ABA uses techniques such as:
• Discrete Trial Training (DTT): The DTT method helps the child master complex tasks by first mastering the small subcomponents of the task. Positive reinforcement and incentives are used to reward correct answers and behaviours. The desired behaviour or skill is taught and repeated until the child learns.
• Early Intensive Behavioral Intervention (EIBI): A type of ABA that is aimed at reducing atypical behaviours of autism in children younger than five or more commonly under three years.
• Pivotal Response Training (PRT): PRT focuses on four pivotal areas of a child’s development: motivation, self-management, self-initiation, and responsiveness to multiple cues. It is a child-directed intervention because the therapist often uses an activity or an item that interests the child to teach and help the child reach a goal.
Combined intervention
Treatment and Education of Autistic and Related Communication Handicapped Children Method (TEACCH): TEACCH is based on structured teaching. It builds on skills that children with autism already possess. The goal of TEACCH is to help children with autism function as independently as possible.
Developmental approaches
Developmental, Individual Differences, Relationship-Based Approach (DIR – also called “Floortime”): Focuses on emotional and relational development (feelings, relationships with caregivers). It also focuses on how the child deals with sights, sounds, and smells.
Standard approaches
• Occupational therapy: Occupational therapy employs a variety of strategies to help a child with autism participate more effectively in everyday tasks. It helps strengthen certain areas like gross motor skills and fine motor skills.
• Speech therapy: Speech therapists work with the child and help improve communication. They use alternate methods like gestures, picture boards, etc. to help the child learn how to express their thoughts and ideas to others. It is important to have speech therapy as part of an interdisciplinary intervention program because children with autism have more trouble with communication.
• Sensory integration therapy: Helps the child deal with sensory information such as sights, sounds, and smells. Sensory integration therapy could help a child who is bothered by certain sounds or does not like to be touched. When children gain better control of their senses, they are in more control of their movements, sounds, and emotions. This reduces awkwardness and improves social skills.
Other approaches
• Music therapy: For children with ASD, music therapy employs specific musical activities to improve social and communication skills in children with autism.
• Picture Exchange Communication System (PECS): This is used commonly for children with autism who have minimal or no communication abilities. Picture symbols or cards are used to facilitate communication.
• Note: Research shows that early intervention treatment can greatly support a child’s development. Therefore, it is important to talk to your child’s doctor as soon as possible if you think your child has autism or any other developmental problem. Also many intervention centers offer programs to help distraught parents or caregivers who need support and counseling. Please talk to your therapist to find out what training is available and what will equip you best to work along with the therapists in helping the child.
Medication
Better Living Through Chemistry. Medication can help with biological problems. The old advertising slogan about “better living through chemistry” rings true. There comes a point in the lives of some people with Asperger’s or high-functioning autism where they can benefit from pharmaceutical treatment. For example, obsessions and anxieties often worsen with age; many high-functioning people in their late 20s or early 30s experience crippling anxiety that can sabotage their jobs. Yet, some of the most miserable people with Asperger’s either refuse to try medication or are taking the wrong one.
In her late 20s, Temple Grandin’s anxiety steadily worsened. She had panic attacks for no reason and woke up at night with her heart pounding. She resisted the idea of taking the medication until 1980 when she read an article in the Archives of General Psychiatry by David Sheehan and his colleagues about endogenous anxiety. They discussed the use of tricyclic antidepressants for treating anxiety, and their list of symptoms described her. Antidepressants saved her; she would not have functioned well after age 30 without them. All her stress-related illnesses were cured; her debilitating headaches and colitis stopped. She became a reluctant believer in biochemistry.
Work. Adults with Asperger’s can range from Jerry Newport, a number savant, to unhappy and bitter loners living on the outskirts of society. One computer programmer at a university was obsessed with clocks and time; he had drifted from odd job to odd job until he found an employer who understood his eccentricities and recognized his talents.
Unhappy Asperger’s people have no work and no play. This is why it is so important to develop an autistic or Asperger person’s talents into enjoyable skills such as computer programming, engineering, architectural drafting, accounting, art, or music. For kids with limited expressive language, music can serve as a more natural medium of communication than speech. Revel in autistic eccentricities.
The happiest Asperger’s people have intellectually satisfying work; many are computer programmers. If a boring job cannot be avoided, a good hobby can be a lifesaver, in part because Asperger’s and high-functioning autistic people often socialize best through shared interests.
The Asperger’s mind enjoys and focuses on details, while the normal mind is more skilled at assembling whole concepts from details. Some people with Asperger’s are visual thinkers and others are math, music, or number thinkers, but all think in specifics.
Many hidden Asperger people are functioning well in their careers. There is no way to turn a person with Asperger’s into a social being; he can only learn social survival rules and work to understand Asperger’s. Some people will always be technical people who are more interested in science than in being social, and they have had to learn that they are from a land where people learn by logic and have few social instincts.
The world needs the Asperger’s people. After all, the social people who sat around the campfire talking were probably not the makers of the first stone spear. It is also likely that most social people did not create the great culture of our civilization, such as literature, art, engineering, music, science, and mathematics. Genetics and biology provide the world with different kinds of minds. Whether or not these minds make great contributions to society is determined by both biology and the environment.
Caring for someone with ASD
Parents or guardians go through enormous stress and can be quite distraught when they know that their child is diagnosed with autism. Many parents, especially mothers quit their jobs to become full-time caregivers for their children. A lot of adjustments happen at home, siblings learn to adapt their life around their brother or sister who has been identified to have autism, family members chip in with more support, activities, and plans are made keeping the child’s interest in mind, and so on. In short, raising a child with autism brings with it a unique set of challenges. However, when armed with the right knowledge, parents or caregivers can make better choices for the child.
In this situation, as a parent and caregiver, you can:
• Learn as much as possible about autism. Participate in training programs where you can learn about how you can use different interventions. Autistic lives are meaningful and worthwhile. Discussions about ways to make autistic people ‘less autistic’, to ‘cure’ autism, to render autistic people indistinguishable from non-autistic people, or to prevent the births of future autistic people are not appropriate.
• Plan and provide a routine for all the daily activities.
• Seek professional help. You may also need counselling to be able to cope with the situation.
• It is natural that only parents of children with special needs can completely understand what other such parents go through. Join support groups and connect with other parents of children with autism.
• Far too many resources have been wasted on finding the cause and cure of autism, rather than obtaining the services they need. Much of the suffering associated with autism is the result of being habitually denied those services. Parents need to use their collective power to change that.
• Autism presents a particularly difficult challenge for parents because the child inhabits a different world of subjective experience from the one that they take for granted. Some amount of grief is natural but parents must separate their expectations of an idealized child from the child in front of them who desperately needs their love and support. If grief goes on for too long, it transmits a dangerous message to the child: that they are inadequate as they are.
Grieve if you must, for your lost dreams, but don’t mourn for your child. They are alive. They are real. And they are there waiting for you.
• Take time for yourself. Take care of your physical and emotional health.
• At conferences for Asperger’s, it is very useful to use name-tag holders with three sides: red means “Nobody should try to interact with me,” yellow “Only people I already know should interact with me, not strangers and green means “I want to interact but am having trouble initiating, so please initiate an interaction with me.” These have been widely adopted at autistic-run conferences all over the world.
RESOURCES
Most researchers now believe that autism is not a single unified entity but a cluster of underlying conditions. These conditions produce a distinctive constellation of behaviours and needs that manifest in different ways at various stages of an individual’s development. Adequately addressing these needs requires a lifetime of support from parents, educators, and the community, as Asperger predicted back in 1938. The traits of autism are “not at all rare.” In fact, given current estimates of prevalence, autistic people constitute one of the largest minorities in the world. There are roughly as many people on the spectrum in America as there are Jews.
The process of building a world suited to the needs and special abilities of all kinds of minds is just starting but unlike long-range projects like teasing out the genetics and environmental factors that contribute to complex conditions like autism the returns for autistic people and their families are practical and immediate.. These innovations are much less expensive than projects requiring millions of dollars in federal funding.
Books. Books like Clara Claiborne Park’s The Siege, Oliver Sack’s An Anthropologist on Mars, and Temple Grandin’s Thinking in Pictures offered a view of the diverse world of autism from a unique vantage point.
The Siege: Psychiatrists falsely blamed “refrigerator mothers” for causing their children’s autism by providing them with inadequate nurturing.
An Anthropologist from Mars: Oliver Sachs described the challenges faced in day-to-day life while bringing the strengths of their atypical minds to their work. “No two people with autism are the same – the precise form or expression is different in every case. There may be a most intricate (and potentially creative) interaction between the autistic traits and other qualities of the individual. While a single glance may suffice for clinical diagnosis, if we hope to understand the autistic individual, nothing less than a total biography will do.”
Thinking in Pictures by Temple Grandin. Thinking in Pictures was a biography from the inside. Grandin didn’t learn to speak until she was four, and was clinically diagnosed with brain damage – a common occurrence in the days when autism was widely unknown. Encouraged by her mother and a supportive high school science teacher, she developed her instinctive kinship with animals into a practical set of skills that enabled her to succeed in the demanding job of designing facilities for the livestock industry. She came to regard her autism as both a disability and a gift, as different, not less.
One unanticipated consequence was the emergence of gifted autistic adults like Temple Grandin into public life. As they articulated their experiences of growing up, they found commonalities that challenged even many of Wing’s long-held assumptions about autism such as the notion that people like her daughter lack empathy. Instead of seeing themselves as psychotic or intrinsically disordered, they came to take pride in their eccentricities, learning to see their minds as “different, not less” as Grandin put it.
The World Needs People With Asperger’s Syndrome by Temple Grandin (2002)
Nobody Nowhere by Donna Williams is an autobiography about observing human interactions from a distance, straining to make meaning out of a confusing barrage of jumbled sensory impressions.
There are hundreds of books on Asperger’s. Tony Atwood’s, The Complete Guide to Asperger’s Syndrome is maybe the best.
Star Trek served as a metaphor for an inclusive society of multiracial, multispecies crew of the Enterprise. There was no one left out in the Star Trek universe, no one was ostracized, and no one was too weird. In fact, the weirder you were, the cooler you were because you had more to bring to the table. That was a lifesaving message for a kid who got bullied for being different. They wanted to live on the Enterprise. They often related best to Spock, who seemed much cooler than the conniving and chronically intemperate humans around him.
Asperger/Autism Network (AANE, http://www.aane.org) was one of the first Asperger’s syndrome organizations in the U.S. It was founded in 1996 as the Asperger’s Association of New England by a small group of concerned parents and professionals, shortly after the diagnosis of Asperger Syndrome (AS) first appeared in the U.S. Diagnostic and Statistical Manual (edition IV). AANE’s mission is now to build a national support community by providing education, information, and referrals to individuals with AS, their extended families, and the professionals who assist them.
The Online Asperger Syndrome Information and Support Center (OASIS www.aspergersyndrome.org) has joined with MAAP Services for Autism and Asperger Syndrome to create a single resource for families, individuals, and medical professionals who deal with the challenges of Asperger’s syndrome, autism, and Pervasive Developmental Disorder/Not Otherwise Specified (PDD/NOS).
US Autism & Asperger Association (www.usautism.org) is a non-profit organization that boasts a network of world-renowned professionals with expertise in autism, Asperger’s and other related disorders. The association hosts a world conference in the U.S. each year, establishes standards for training related to autism and Asperger’s, and aligns with local community resources to offer support for the entire autism and Asperger’s communities.
The Asperger Syndrome Training & Employment Partnership ( https://www.integrateadvisors.org/) promotes the employment of individuals with Asperger’s and similar autism spectrum profiles through awareness and training campaigns aimed at Fortune 1000 companies; establishing relationships between support programs for adults with Asperger’s and national employers, and developing corporate partners to implement integrated employment programs for adults with Asperger’s. While the organization does not provide support services to individuals looking for work opportunities, its website lists online resources and programs to assist on the job hunt.
The Global Regional Asperger Syndrome Partnership (www.grasp.org) sponsors support groups all over the country, with special emphasis on New York.
Aspiritech (www.aspiritech.org) is a non-profit organization headquartered in Chicago. Started in 2007 by the parents of an adult son with Asperger’s who had been fired from his part-time job bagging groceries, the organization has as its mission to provide a path for high-functioning individuals on the autism spectrum to realize their potential through gainful employment. It does this by leveraging the unique talents of Aspies – attention to detail, superlative technical aptitude, and ability to thrive in a highly repetitive task-driven work environment – and aligning those talents to the needs of the business community. Specifically, the organization provides competitively-priced testing services to client software development organizations. Its major services include functional, compatibility, and regression testing, as well as test case development.
My Asperger’s Child (www.myaspergerschild.com/) is an organization whose goal is to provide help in the form of education and counselling for the parents of children with Asperger’s and high-functioning autism
The American Academy of Developmental Medicine and Dentistry (AADMD) https://aadmd.org/ ) provides a forum for healthcare professionals who provide clinical care to people with neurodevelopmental disorders and intellectual disabilities. The AADMD is resolved to assist in reforming healthcare for those with neurodevelopmental disorders, prepare clinicians to face the unique challenges in caring for those with a neurodevelopmental or intellectual disorder, and establish alliances between visionary advocacy and healthcare organizations to achieve better healthcare.
Autistic Self-Advocacy Network (ASAN). Founded by Ari Ne’eman, when only 19 years old because the difficulties of many people with Asperger’s were not symptoms of autism, but problems built into the ways that society treats people that don’t meet the standard expectations of “normal.” They feel a strange disconnect between the autistic community and the broader disability rights movement. Autism was still discussed almost exclusively in medical rather than social terms, especially at the height of the Vaccine Wars when virtually all the media coverage revolved around the vaccine controversy.
It rejects the approach of “high-functioning” autistics distancing themselves from “low-functioning” autistics and doesn’t want anything to do with the word disability. All autistic people would benefit from destigmatizing the condition and improving access to services and education.
ASAN offered parents ways of fighting for a better future for their children that don’t depend on hopes for a recovery. It made available something to young people to have role models of happy, creative, and socially engaged autistic lives.
ASAN was instrumental in persuading President Obama to include disabled workers in the executive order raising the minimum wage for federal contractors. It also worked with the APA in drafting the DSM-5 to ensure that the coping skills employed by autistic teenagers, adults, women, and people of colour to fit in would not be used to exclude them from a diagnosis – its full breath was finally reflected in the APA’s criteria.
ASAN’s leadership training program has demonstrated the potential of peer mentoring for young people on the Spectrum.
Autreat is a camp that offers an environment free of the sensory assaults unavoidable at most urban conference centers. The themes center around “Celebrating Autistic Culture”. Usually, they are attended by autistics representing the complete diversity of the spectrum. The overriding principle is “opportunity but not pressure.” Autreat has become an annual event in many countries. The most commonly reported experience is that the participants don’t feel disabled, though their neurology has not changed.
They forgot to eat, do chores, and shared playful common terms they’d developed to map their subjective experiences, finding a surprising amount of overlap, including stimming together. Some behaviours that had been viewed for so long as inherently antisocial could become social in a group of autistic adults. Together, they felt like a lost tribe. They all had a sense of belonging, of being understood – an autistic space.
Wrong Planet offers a hangout on the Internet – community forums on social skills, bullying, and anxiety with opportunities for members to contribute by the time they are 15 and 17. Their goal was to alleviate those with Asperger’s from this pressure to conform. “It is best to learn how to use your uniqueness to your advantage and find your place in the world.” Young people on the spectrum flock to online communities like Wrong Planet to announce their diagnoses as cause for celebration because their lives had, at last, come into focus.
Thinking Person’s Guide to Autism is a website that covers a broad range of subjects with no whitewashing or promotion of dubious treatments. Just the facts, from people a little further down the road. They are not broken, just neurologically outnumbered.
Star Trek served as a metaphor for an inclusive society of multiracial, multispecies crew of the Enterprise. There was no one left out in the Star Trek universe, no one was ostracized, and no one was too weird. In fact, the weirder you were, the cooler you were because you had more to bring to the table. That was a lifesaving message for a kid who got bullied for being different. They wanted to live on the Enterprise. They often related best to Spock, who seemed much cooler than the conniving and chronically intemperate humans around him.
Loud Hands by Julia Bascom was a groundbreaking anthology of essays by people on the spectrum that offered a broad range of autistic perspectives on such issues a being labelled “low-functioning” and the harm inflicted by organizations like Autism Speaks that frame autistic people as a tragedy and a burden to society. “One of the cruellest tricks our culture plays on autistic people is that it makes us strangers to ourselves, autistics are no longer willing to be spectators in our own stories.”
Thinking Person’s Guide to Autism A website, it covers a broad range of subjects with no whitewashing or promotion of dubious treatments. Just the facts, from people a little further down the road. They are not broken, just neurologically outnumbered.
Specialisterne. Neurodiversity is also being embraced in the workplace of companies like Specialisterne, founded in Denmark, which employs people on the spectrum to put their autistic intelligence to work in the technology industry. Specialisterne has been so successful that it has opened satellite offices in the United Kingdom and the United States and recently forged an alliance with German software company SAP to serve the needs of the rapidly growing technology industry in India. Instead of putting potential candidates through gruelling face-to-face interviews, Speciaisterne lets them cut loose with a table full of Lego Mindstorms Robots, little machines that can be programmed to perform simple tasks. Thus, candidates can just show off their skills rather than have to explain them.
Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) is a group collaborating with self-advocates and rein 20214, released a comprehensive toolkit designed to inform patients and providers of the unique needs of autistic people in the health care system.
100-ish Books for Adults Exploring Their Own Autistic Identity |
This is a book recommendation list for newly identified or diagnosed autistic adults, or adults who are exploring their own neurodivergence.
The following titles were carefully selected in That Au-Some Book Club – a group dedicated to discussing books about autism and neurodiversity.
It’s important to remember that there are no perfect books. All books related to autism and neurodiversity come with several trigger warnings. Some may contain person-first language, while others may include internalized ableism.
CLICK HERE if you’re only searching for CHILDREN’S books, or books for TEENS/TWEENS.
CLICK HERE to view our “MASTER LIST” of all the books we have approved on autism and neurodiversity.
Looking for autistic authors only?
Listing with a (*) indicate the author identifies as autistic or that the book has autistic contributors.
Listings without a(*) indicate either the author’s neurology is unknown, or the author is allistic (not autistic).
Some titles may show that the author is ND (neurodivergent). Some authors choose not to share their neurology with the public.
Informational Books and Anthologies
We’re Not Broken: Changing the Autism Conversation by Eric Garcia*
On Audible
Loud Hands: Autistic People Speaking (Anthology) Julia Bascom *
All the Weight of Our Dreams: On Living Racialized Autism edited by Lydia X Z Brown et al. (By autistic women of color)* We are awaiting a new edition to this book.
Typed Words Loud Voices edited by Amy Sequenzia & Elizabeth J. Grace*
Spectrum Women: Walking to the Beat of Autism by Barb Cook (Editor), Michelle Garnett (Editor), Jen Elcheson (Contributor)*
Knowing Why: Adult-Diagnosed Autistic People on Life and Autism by Autistic Self Advocacy Network, Elizabeth Bartmess (ed.)*
And Straight on Till Morning: Essays on Autism Acceptance by ASAN and Julia Bascom *
Autism in Adults by Luke Beardon
Avoiding Anxiety in Autistic Adults by Dr. Luke Beardon
On Audible
Autistic Community and the Neurodiversity Movement: Stories from the Front Line edited by Steven K. Kapp *
Exposure Anxiety – The Invisible Cage: An Exploration of Self-Protection Responses in the Autism Spectrum and Beyond by Donna Williams*
Women on the Spectrum: A Handbook for Life by Emma Goodall and Yenn Purkis*
PDA by PDA-ers compiled by Sally Cat *
The PDA Paradox by Harry Thompson *
On Audible
Aspergirls: Empowering Females with Asperger Syndrome by Rudy Simone*
On Audible
Camouflage: The Hidden Lives of Autistic Women by Sarah Bargiela*
Trauma, Stigma, and Autism: Developing Resilience and Loosening the Grip of Shame by Gordon Gates*
Memoirs, Autobiographies, Nonfiction-ish Books
Back from the Brink: Stories of Resilience, Reconciliation, and Reconnection by Tim Chan and Sarah Chan *
Letters to My Weird Sisters: On Autism and Feminism by Joanne Limburg *
Twirling Naked in the Streets and No One Noticed: Growing Up with Undiagnosed Autism by Jeannie Davide-Rivera *
On Audible
The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Be a Better Husband by David Finch *
On Audible
Odd Girl Out by Laura James *
On Audible
I Overcame My Autism and All I Got was This Lousy Anxiety Disorder: A Memoir by Sarah Kurchak *
On Audible
Funny, You Don’t Look Autistic: A Comedian’s Guide to Life on the Spectrum by Michael McCreary *
On Audible
Why Are the Lights So Loud? Stories About Being an Adult Female with Aspergers by Heather Chase *
Autism in Heels: The Untold Story of a Female Life on the Spectrum by Jennifer Cook O’Toole *
On Audible
Drama Queen: One Autistic Woman and a Life of Unhelpful Labels by Sara Gibbs*
Nobody Nowhere: The Remarkable Autobiography of An Autistic Girl by Donna Williams *
Somebody Somewhere: Breaking Free From the World of Autism by Donna Williams *
Born on a Blue Day by Daniel Tammet*
On Audible
But You Don’t Look Autistic At All by Bianca Toeps*
Nerdy, Shy, and Socially Inappropriate by Cynthia Kim *
The Bride Test by Helen Hoang *
Autistic Theory and History
NeuroTribes: the Legacy of Autism and the Future of Neurodiversity by Steve Silberman
On Audible
Divergent Mind: Thriving In a World That Wasn’t Designed For You by Jenera Nerenberg
On Audible
War on Autism: On the Cultural Logic of Normative Violence by Anne McGuire
A Mismatch of Salience: Explorations of the Nature of Autism From Theory to Practice by Damian Milton *
The Power of Neurodiversity: Discovering the Extraordinary Gifts of Autism, ADHD, Dyslexia, and Other Brain Differences by Thomas Armstrong PhD
The Neurodiversity Reader: Exploring Concepts, Lived Experience and Implications for Practice by Damian Milton et al *
Novels
Exposure Anxiety – The Invisible Cage: An Exploration of Self-Protection Responses in the Autism Spectrum and Beyond by Donna Williams*
Underdogs Series by Chris Bonnello*
On Audible
A Room Called Earth by Madeleine Ryan*
On Audible
Have Geek, Will Travel by Rebecca Blevins*
A Kind of Spark by Elle McNicoll*
On Audible
Gender and Sexuality
Queerly Autistic: The Ultimate Guide for LGBTQIA+ Teens on the Spectrum by Erin Ekins *
On Audible
Gender Identity, Sexuality, and Autism by Eva Mendes and Meredith Maroney *
Spectrums: Autistic Transgender People in their Own Words Edited by Maxfield Sparrow *
Supporting Transgender Autistic Youth and Adults by Finn Gratton
The Autistic Trans Guide to Life by Yenn Purkis and Wenn Lawson *
Trans and Autistic: Stories from Life at the Intersection by Noah Adams and Bridget Liang *
How to Be Ace: A Memoir of Growing Up Asexual by Rebecca Burgess *