Autism in Adulthood

Internet Resources

1. I am autistic, not just an adult with autism. It is part of who I am. 2. Autism is a neurological variation, not a disease, or mental illness. Autism often includes differences in social behavior and practical skills. 3. Who I am and what I am capable of is not defined by medical diagnosing criteria. I am born with my own set of abilities and difficulties, autism included. 4. I am not going to be cured. 5. I may be your adult child, but my life is my own. 6. Focus on the positives of my, and others autism, I am living my life as best as I can, I want to make the most of it every day. 7. I am a logical thinker, that is one of my strengths. 8. Socialising is not always easy, if I don't want to join in, thats my choice, and I will avoid a situation if I am uncomfortable with it. 9. I do have emotions, autistics are not emotionless like some stereotypes suggest. However, I may express them in a different way. 10. If you have an autistic adult in your family, try to find out information about autism.
Amy Nelson, Aspies for Freedom
The Autism- Asperger's Syndrome Coalition for Education, Networking and Development is a collaboration of adults on the autism spectrum, people who live or work closely with them, and specialists in the field of autism.
What I needed to do was explain AS to Tom's co-workers so that they would understand that they were misinterpreting certain behaviors that were caused by the disability, and then give them some strategies to improve the way that they worked with him.
Donna Rosinski
Includes a bibliography, journals, videos, research, and specialist training.
National Autistic Society
People are adults for far longer than they are children, whether one is on the spectrum or not. It is an area that tends to get overlooked by media information and by the advertising within the autism spectrum field.
Jean-Paul Bovee, Stephen Shore
This article reports a follow-up study of school leavers with mental retardation or learning disabilities who were surveyed 1- and 3-years after they left school to determine what they were doing in major life areas (employment, independent living or community integration). Students were divided into two groups based on self-determination scores collected during theirfinal year at high school. Comparisons between these groups on outcomes at I and 3 years post-graduation indicate that students who were more self-determined fared better across multiple life categories, including employment and access to health and other benefits, financial independence, and independent living.
Michael L. Wehmeyer, Susan B. Palmer
Our primary goals are (1) to conduct innovative research on family caregiving and the social lives of adolescents and adults with autism, and (2) to disseminate our research findings to policy makers, practitioners, families, and the general public.
M.M. Selzer
The Cambridge Lifespan Asperger Syndrome Service has developed a simple ten question checklist to help identify those individuals who fit the common characteristics of Asperger's patients.
Floyd Tilton
My aim is to share with other tutors the knowledge I have gained whilst teaching adults with autism. Many of whom have been educated within the mainstream education system and have found it difficult to cope and other adults who have attended autistic specialist schools. I have been teaching this group of students for almost 3 years and during that time I have completed my PCET (Post Compulsory Education and training) certficate, and have learnt valuable lessons to pass on and share with others.
I formed the Advocacy Center with a basic concept: while there are many resources for children with Asperger Syndrome, there is hardly anything for adults, except support groups, and Social Security benefits
Another point of peer pressure is the constant reminder that I get almost every day to 'think positive!' I try to tell these people that, to me, positive is but one element in any cycle, and, like a battery, both terminals are needed.
Brian Henson
People with autism and Asperger's are far more likely to benefit from cognitive behavior therapy than from generic 'tell me about your feelings' therapy. Cognitive behavior therapy helps people reexamine their attitudes and build new skills for coping
Rosie Mestel
Treatment strategies emphasising effective communication systems, regular schedules, support networks, and judicious use of medication can yield remarkable improvements in daily functioning.
Marilynn Larkin
This article introduces the basic level reader to Asperger Syndrome (AS), with primary emphasis placed upon adults.
Roger Meyer
Online discussion board on adult issues. The purpose of this forum is to provide information to adults affected by AS as well as related disorders such as HFA and PDD-NOS.
A forum for autistic and AS adults only. We cover workplace issues, relationships, living AS in an NT world, financial issues, and many other daily-life events adults on the autism spectrum face.
The following information applies generally to adults who discover that previous misdiagnoses or no diagnosis with a "lifelong feeling of being different" has led them to the point of their seeking the proper label. For all adults, the diagnostic process, conducted by a competent, knowledgeable and sensitive professional or professional team, is a life-changing experience. Whether one discovers autism, non-verbal learning disability, attention deficit disorder (inattentive or combined type), or any combination of other developmental or mental health conditions that finally seem to fit, the following description of the process seems to make sense for most individuals.
Roger N. Meyer
This web site is dedicated to all adults with Asperger's Syndrome and to those who love them and seek to understand more about our different abilities. While many things in life present many challenges the unique communication and relational challenges that adults with Asperger's Syndrome face will be examined here in articles, with the input of adults with Asperger's and hopefully also with the input of others who are in relationship with us Aspies.
What may be a problem is the ability to judge what other road users, pedestrians, animals etc might do and how this should affect their own driving; understanding that not all drivers and other road users obey all of the rules all of the time; road rage.
So, the question is what is normal about wanting to be well adjusted? What is the prize that you get at the end of the day for fitting in?
A.J. Mahari is a website to promote the entrepreneurial (self employment) skills of people diagnosed on the Autistic Spectrum world-wide and to provide links to Autie-Friendly businesses of various kinds. is run by a small committee of people formally diagnosed as being on the Autistic Spectrum and those who diagnosed members deem to be 'Autie-Friendly' with a view to: * Promoting public awareness of the wide range of employable skills of ALL people on the Autistic Spectrum at all levels of functioning and ability. * Provide the possibility for people on the Autistic Spectrum to advertise their skills directly to potential hirers. * Provide listings of goods/skills/services which are believed to be particularly 'Autie-Friendly' * Provide potential peers/mentors to those interested in learning similar skills from someone who is, themselves, on the Autistic Spectrum. * Provide a model of self-determination for those on the Autistic Spectrum outside the control of non-Autistic professionals and their Agencies, especially where those services are, for various reasons, lacking. * If necessary, provide an affordable Autie-run, Autie friendly consultancy service to help newcomers in understanding the basics of employable skills, self employment, dealing with the public, keeping safe and self promotion necessary to getting paid work.
There's been a lot of attention focused on the unexplained swell of children with autism that began in the 1990s and now affects one in every 166 births in the United States. But there are adults, like Paul DiSavino, who were ahead of that wave. He was born in 1968 and made it through childhood and adolescence long ago. At age 37, he's well into manhood.
ABC News
In recognizing other subtypes of autism disorder, we may tend to overlook the needs of adults with the most distinctive and severe forms of the disorder.
Ontario Adult Autism Research, Support Network
Not only are adults with autistic spectrum disorders (ASD) often excluded from services, but so many of them also struggle to access advocacy support which could help them.
Autistic adolescents and adults are people you might encounter every day but not know it. There are many things you might think about us, but often they are not true.
Amanda Baggs
There is an increasing number of autistic adults empowered by technology—computers, access to the Internet, assistive technology such as text-to-speech synthesizers, and so on—who are writing and speaking and providing much needed perspective on what helps and what does not, and calling attention to areas of struggle in day-to-day living that need much more attention and funding than they get, relative to the attention and funding dedicated to searching for a “cure” for autism.
Kathleen Seidel, Phil Schwarz,
Be Clear; We Don't Always Understand Social Rules; We Don't Like Crowds!; Don't Be Easily Offended; Sometimes We Just Want to be Alone; You Are Strange To Us!; I Can See and Hear Fine!; Let Us be Autistic!; Help Me When I Ask; Answer Our Questions; Ask Us QuestionsAllow Us Alternative Forms of Communication; Let Us Be Silent; Don't Ignore Us; Our Past; Forgive Us.
Joel Smith
Most adults who are diagnosed with AS, no matter what process they have to work through in understanding and self-acceptance, find the diagnosis a meaningful revelation in their lives. Substantial enough in scope, is this diagnosis, that it can mean the difference between a life of self-recrimination, self-loathing, self-hatred, isolation, alienation, or an increased understanding of self that enables those diagnosed with AS to make much more sense out of their lives and experiences.
A.J. Mahari
The community support scheme for adults with Asperger syndrome began in Birmingham, United Kingdom, in January 1996. The scheme is funded by a joint Health and Social Services grant and ran as a pilot project until January 1999. This article reports on the progress made during the first 15 months of the scheme by examining the philosophy behind the scheme and the practicalities of providing effective community support to people with a diagnosis of Asperger syndrome. Case studies have been included to illustrate support methods in practice, and all names have been changed to maintain confidentiality. Measures of progress within the first year of the scheme were evaluated through attendance rates, observation, reviews, and the comments of the clients and carers themselves.
Andrea Macleod
BS can be a problem for people on The Spectrum because people on The Spectrum are often more trusting. The purpose is to expand knowledge on one aspect, recognizing BS.
Stan P.
This study examined change prospectively in autism symptoms and maladaptive behaviors during a 4.5 year period in 241 adolescents and adults with an autism spectrum disorder who were 10-52 years old (mean = 22.0) when the study began. Although many individuals' symptoms remained stable, a greater proportion of the sample experienced declines than increases in their level of autism symptoms and maladaptive behaviors, and there were significant improvements in mean levels of symptoms. Individuals with mental retardation had more autism symptoms and maladaptive behaviors than those without mental retardation, and they improved less over time. Compared to adolescents, older sample members (31 and older) had fewer maladaptive behaviors and experienced more improvement in these behaviors over time.
PT Shattuck et al
The 14 adults described above have a total of 54 children. Twenty-seven (5O %) are autistic, 23 are nonautistic full siblings, and four are nonautistic half-siblings. Each of the 27 autistic children had been completely evaluated as part of the UCLA Registry for Genetic Studies in Autism or the UCLA-University of Utah Epidemiologic Survey of Utah by previously published methods. They differ as a group in some interesting respects from the total Utah Epidemiologic Survey population. Their mean IQ (64) is higher than the mean IQ (43) of the 26 subjects (11%) in the Utah survey who had rare diseases known to affect the CNS. Also, their mean IQ is higher than the mean IQ (58) of the entire 233 patients in the survey. Finally, the sex ratio of these 27 subjects (1.89) is lower than the ratio of 3.75 foEd in the entire Utah sample. Diagnosing possible autism in adults, as well as in children, has implications for changing research strategies. Improving ascertainment may strengthen the hypothesis that there is a familial form of autism. Genetic counseling, which is now limited to telling parents that the sibling risk estimate is 2% to 4% and that the overall occurrence risk estimate is 8%, will also most likely be increased.
Edward Ritvo et al
Most studies into autistic disorder have concentrated on children. This study aims to establish a prevalence rate of autistic disorders in an adult population with learning disabilities.
Caryl Morgan
I intend for this book to serve the sole purpose of improving the quality of people's lives and would strongly urge any of my autistic audience not to get too stressed out trying to apply this book too quickly...
Marc Segar
I've found that when my clients lock up and remain stuck in a preservative thought pattern it is best to process the dynamic itself rather than attempt to return to content. Until we both process the effect of the dynamic itself, we can't make any forward progress. I've also found that when this occurs, initially enlisting the aid of the other spouse to redirect the conversation doesn't help. The counselor's intervention should be directly focused on a direct interaction with the client without the presence of a third party. There is too much opportunity for distraction or a likely desire to "say the right thing" rather than to focus on how the right thing is being expressed.
Roger Meyer
What does it mean to respect autonomy and encourage meaningful consent to treatment in the case of patients who have dementia or are otherwise incompetent?
Donna Dickenson
Highlights the process required through negotiation with local authorities, recruitment of staffing, legal obligations and the format of programme planning.
Isobel Sutherland
Diagnosing mental disorders in mentally retarded adults presents several difficulties. First, the diagnostic criteria for most mental disorders use subjective criteria, such as reporting mood, loss of energy, grandiose thoughts, delusions and hallucinations. Mentally retarded patients, however, often cannot report their subjective experiences accurately. Some of these patients even have little or no ability to speak. Second, the differentiation of developmental behavior and thinking from psychopathology presents difficulties.
Arthur Rifkin
Seven men with autistic disorders developed mood disorders or psychotic illnesses during adult life. This association has also been described in several previous reports. Although no firm conclusions can be drawn on the basis of case reports alone, it appears that autistic disorders may increase vulnerability to such psychoses.
D. Clarket et al
The typical route for getting diagnosed is to visit your GP and ask for a referral to a psychiatrist or clinical psychologist, preferably one with experience of diagnosing autism.
National Autistic Society
How fast you pick up driving often has nothing at all to do with your intelligence in other things. Some real dimwits are still able to drive in as few as five lessons whereas some really intelligent people can need as many as fifty lessons.
Marc Segar
Consider social aspects of different types of work when considering careers. Offer training in social skills to students who need it. Consider going into a field where there is a lot of demand for employees. Consider suitable occupations.
Sarah Boslaugh
Communication, self help, domestic skills, work skills and work behaviour, leisure skills and social skills are the key skills which are worked on in a educational program which aspires to the greatest possible level of happiness permitted by a PDD.
J. Valkenborg
Thinking about autism spectrum conditions as empathy disorders may be a useful framework and may teach us something about the neuro-developmental and genetic basis of empathy.
Simon Baron-Cohen, Sally Wheelwright
This manual effectively describes how consumer-directed personal assistant services break down a significant barrier to independent living. Rejecting the medical model, the team of writers at Services for Independent Living (SIL) and their colleagues have captured the essential elements of successful consumer-directed personal assistant services.
A potpourri of practical advice for getting on in the neurotypical world; covers such topics as eye contact, face blindness, memory issues, social situations, work situations, disclosure, optical sensitivity, trivial negotiated interactions, etc.
Stan P.
Lars Perner
It is well known that IQ is an important prognostic variable in the outcome of autistic children. There are, however, very few data available on the outcome of nonretarded autistic children as adults. We identified 16 such probands from records and followed them up between 11 and 27 years since discharge from a center specializing in the assessment of autistic children. There were 12 males and 4 females, average age was 26, and mean IQ was 92 (range 68-110). Although the majority were functioning poorly in terms of occupational-social outcome and psychiatric symptoms, a surprising number (4) had a very good outcome and might be considered recovered. The severity of early autistic behavior was a poor predictor of outcome, but neuropsychologic measures of nonverbal problem solving were highly correlated with outcomes. The results of the study indicate that a small percentage of nonretarded autistic children can be expected to recover to a substantial degree.
P. Szatmari et al
I think that autistic adults who were formerly autistic children, have an autonomous and specific psychopathological form. This needs an adequate drug treatment, not imitating on that used in adults' psychoses.
Renato Cocchi
In conclusion, the sex differences in close relationships revealed by the FQ in the general population may help us understand conditions like autism or AS not as qualitatively different from anything else we are familiar with but, instead, simply as an extreme of the normal quantitative variation we see in any sample.
Simon Baron-Cohen, Sally Wheelwright
The purpose is to assist personnel in adult psychiatry in increasing their knowledge of the difficulties in contact, communication and cognition that are associated with a diagnosis of autism
Eve Mandre
We encourage people who live with autism in any way to share their stories and insights through the OAARSN website.
Ontario Adult Autism Research, Support Network
In psychiatry, adults with Asperger often receive alternative diagnoses such as schizophrenia, depression or almost any personality disorder. AS is especially similar to Nonverbal Learning Disability and Schizoid Personality.
Paul Cooijmans
You're in college now. It's your chance to make a fresh start. People in college are often more socially accepting than high school students. So, take a deep breath and get ready for the next challenge and the time of your life!
Stephen Rothenberg
For the first time in human experience persons with developmental disabilities are living longer. The average life span of an individual with Down Syndrome has increased from 9 years in the 1920s to 65 years or greater as of the end of the 1990s. In large part, this increase in life span is directly attributable to a general improvement in overall health care throughout American society. Even more crucial to persons with developmental disabilities has been the near-abolition of institutionalization. Individuals who would formerly have died from substandard health care, substandard personal care, poor food, overcrowded conditions, and invidious benign neglect, can now avail themselves of resources in the general community, along with all the supports which those resources provide.
Jeffrey H. Minde
These skills will require at least some general know how, common sense, and understanding of social structure because socializing is not always predictable.
The fact that some autistic people lose abilities with age is well-documented, but it is not always discussed in clear ways... (This article) is intended to give people a list of starting points to understand what is happening to them.
Amanda Baggs
As persons with severe and persistent mental illness age, large numbers continue to live with their elderly parents or receive substantial social and economic support from them. Prospective studies suggest that when caregivers die, individuals with mental illness experience housing disruptions and potentially traumatic transitions. This paper describes the scope of the problem and addresses pragmatic and psychological issues involved in preparing both caregivers and patients for parental aging and eventual loss.
Harriet P. Lefley, Agnes B. Hatfield
For some, the most important function of their computer has been the ability to communicate with other autistic individuals and other parents of autistic people.
Valerie Herskowitz
The case histories of 9 autistic children, 8 boys and 1 girl, selected from a total of 96 so diagnosed at The John Hopkins Hospital prior to 1953, are presented in some detail and discussed. These children, first evaluated and given the diagnosis at an age ranging from 2 years and 10 months to 8 years and 1 month, are presently in their 20's and 30's. Their development is traced from acute psychotic infancy until the end of 1971. Having made a sufficient social adjustment, they manage to function as self-dependent individuals, mostly well educated and all gainfully employed. Attention is drawn to differences between this group and other autistic patients, maturational and environmental issues as well as to past and present patterns of behavior and personality structure.
Leo Kanner et al
While the more overt symptoms of autism are typically more obvious in early childhood, the symptoms of AS may only become apparent with the increasing functional and social demands of adolescence. In the adolescent with AS, the stress of unrecognized disability, limited achievement, and a sense of failure are often revealed by increasing contrast with siblings and peers. Family and peers may become exasperated by the person's self-centered insensitivity, obsessiveness, and rigid inflexibility, further distorting personal relationships. All these factors can add secondary disability and result in dependency that is disproportionate to the person's intellectual ability.
Mary Muscari, Medscape
When I learned to do sign language and use the computer in 1992, I was surprised that other people wanted to know how I think. I learned that I could stay like me and still fit in your world, a little.
Brad Rand
Howard loves downloading train simulators from diff erent countries of the world on to his railways. He has become hooked on music from YouTube, and loves Enya. I like downloading photos of tropical blue seas, palm trees and beaches. I like looking at different websites and what is going on in the world, especially US politics. Howard is frightened of the telephone, young children, noise and dogs, yet we both love heavy metal such as Queens of the Stone Age, Rammstein and Dave Grohl.
Guardian UK
Even if we are now becoming better at recognizing and diagnosing autism spectrum disorders in adults, there is no treatment method in adult psychiatry that is designed specifically for this group.
Eve Mandre
Sleep patterns of AS adults have similarity to those described in AS children but to date it is unclear whether insomnia in this population is due to comorbid psychiatric disorders or of the AS itself or a combination of both factors.
Pekka Tani, Nina Lindberg, et al.
Much of what looks like rudeness... (is the product of the direct, cut-through-the-bullshit communications style that is natural to people who are more concerned about solving problems than making others feel warm and fuzzy.
Earle Martin et al
The concerned friends and family of Danny Muller, a thirty year old autistic adult, are presenting a petition to the Canadian Government for a better care of all autistics and in special of the adults. We must ensure that our autistic children live a life free of diagnoses of psychiatric disorders that they don't have and a life free of psychiatric drugs that they don't need, instead emphasis should be put on communication.
Executive dysfunction involves problems with planning and executing tasks. Sometimes the "simplest" tasks, such as grooming, are very difficult for autistics due to executive dysfunction. Since each person with executive function problems will exhibit different strengths and weaknesses, the methods for dealing with these problems vary quite a bit. The methods presented below work well for myself - they enable me to live independently in much the same way as a neurotypical. Without these methods, I would be unable to do this. I do believe they can be helpful to many other autistics, although any method chosen needs to be accepted fully by the autistic for it to provide help - and no single strategy will work with all autistics. In fact, some strategies, including some of mine, won't work with most autistics.
Joel Smith
It doesn't always work. You can't simply throw autistic people into the community, leave them to fend for themselves without support and expect them to make it.
Marla Comm
The Minnesota Multiphasic Personality Inventory-Second Edition was administered to 20 adults with autism spectrum disorders (ASD) who fell in the average to above average range of intelligence and 24 age-, intelligence-, and gender-matched college students. Large group differences, with the ASD group scoring higher, were found on the L validity scale, Clinical Scales 2 (D) and 0 (Si), Content scale Social Discomfort (SOD), Supplementary scale Repression (R), and Personality Psychopathology Five (PSY-5) scale INTR (Introversion). The proportion of ASD adults scoring in the clinical range on these scales was between 25% and 35%. High scores on these scales are consistent with the clinical picture of Asperger syndrome and high-functioning autism in adulthood. Future directions and implications for identifying adults in need of a specialized autism assessment are discussed.
Sally Ozonoff et al
Adults with autism are emerging as people who very often require a continuation of the intensive training they received in childhood and adolescence in their educational years.
David Holmes
Success in the workplace requires clear definition of task, minimal distraction, knowledge of what motivates the individual, predictable and reliable support strategies and positive reception from colleagues.
Richard Ibbotson
There are growing numbers of older parents caring for adult sons/daughters with lifelong disabilities.They experience changes in their caregiving needs,routines,and patterns as both the caregivers and care receivers grow older. These families often find themselves facing increasing demands while experiencing diminishing resources of health, income and social support.
Marlene MacLellan et a;
Comprehensive resource directory, with a special focus on adult autism issues, especially in Ontario, Canada.
Model programs have demonstrated success, not only in integrating people with autism, but also in improving their quality of life. The knowledge gained should play a central role in the development and enhancement of services to all citizens with autism.
Susan Bryson
The paper reviews what is known about outcome in adult life for more able individuals within the autistic spectrum. Because of the problems associated with differential diagnosis, the results of studies involving high-functioning people with autism and Asperger syndrome are combined. The review focuses predominantly on long-term follow-up research and covers outcome in terms of cognitive, linguistic, academic and adaptive functioning; educational and employment history; independence and social relationships; and behavioural and psychiatric problems. The stability of IQ and other measures over time, and variables related to outcome, are also investigated.
Patricia Howlin
To this end, coming out of this most basic difference in social ability and social connectedness or defined disconnectedness it is my hope that the system and parents of children with AS will stop believing and insisting on trying to normalize the autism/asperger's out of their children. We are born the way we are for good reason.
A.J. Mahari
The purpose of this document is to explain the relationship between staff in National Autistic Society and affiliated Society residential establishments and the parents of the residents, and to establish guidelines for their interaction.
National Autistic Society
The present results, and these anecdotes, suggest that autism and AS may constitute a particular cognitive style, rather than an impairment... The style seems to involve deficits in mindreading in the presence of superior processing of local information.
Simon Baron-Cohen, Jessica Hammer
Driving a vehicle or operating a piece of machinery only requires alertness to the surroundings, and the ability to react to situations. There is not a lot of abstract reasoning involved, and everything is common sense related.
This study examines perceptions of social challenges by adults with autism spectrum disorder (ASD). The investigators analyzed three separate, regularly scheduled social group meetings attended by a total of 18 adults with ASD where the activity was a discussion of social issues. Participants generated social questions and challenges they had encountered as a result of having autism. The questions were presented to the group for a discussion of potential solutions. Written and audio data were collected and a member check was completed. The data were plumbed for key words and emergent themes to identify major social challenges as viewed by adults with ASD. The emergent themes included relationships at work, developing and maintaining personal relationships, appropriate behaviors around members of the opposite sex, and personal perspectives on having ASD.
Laurie A. Sperry, Gary Mesibov
Illustrates the progress young people with ASDs can make with correct support and what can happen if support and advice isn't there for people through key transitional stages: leaving full-time education, looking for employment, leaving the family home.
Older parents of adults with long-term mental illness need professional help with planning for their offspring's future. This assistance should focus on mechanisms such as estate planning to enable case management and other services after parents' death. The involvement of nondisabled siblings in planning should also be encouraged.
Gregory C. Smith et al
Whether people with disabilities function entirely on their own or need assistance, a written directive can provide instruction for daily care, as well as unexpected and sudden contingencies.
Barton Stevens
Managing your own overload levels begins by trying to become acquainted with how 'full' your sensory load can get before you start to lose the ability to manage it.
Jay Quinones, Malakh Studios
Patricia Howlin et al
Becoming an adult for most people means being recognised as capable of giving or withholding consent. If you have been diagnosed as severely learning disabled, however, you will not be seen as capable of that - at least in relation to medical treatment. That is in contrast with the choice and autonomy for people with learning disabilities emphasised in Community Care legislation and meant to govern the conduct of registered care homes for this population. However, that same legislation also lays down the obligation for registered care homes to follow all instructions from doctors. Overriding or failing to carry out medical advice could get a care home closed.
Dinah Murray
David Schachter was born 31 years ago and immediately the challenges began. The diagnosis of profound deafness seemed to answer many of the questions and concerns that arose in the first year of young David's life…
Adelle Jameson Tilton
The distress and disability caused by Asperger syndrome are a consequence of the core syndrome itself, and any neurological or physical disorders which may be associated with it. Distress and disability are also influenced, to a much greater degree than has previously been recognized, by the personal reactions of the sufferer and the social reactions of those around him or her. One important type of personal reaction is the development of a psychological disorder secondary to Asperger syndrome. There is growing evidence that these reactions are commoner and more severe than has been thought previously. They include affective disorders, anxiety-related disorders and conduct disorders. Their manifestations may be altered by the presence of Asperger syndrome. Treatment usually involves a combination of psychoeducation, social change, psychotropic medication and counselling.
Digby Tantam
There have been few studies of psychopathology in adult with autism. This study examined psychiatric co-morbidity in 147 adults with intellectual disability (ID) and autism and 605 adults with ID but without autism. After controlling for the effects of gender, age, psychotropic medication and level of ID, people with autism and ID were no more likely to receive a psychiatric diagnosis than people with ID only. People with autism were less likely to receive a diagnosis of personality disorder. These findings cast doubts on the hypothesis that adults with ID and autism are more vulnerable to certain psychiatric disorders than non-autistic adults with ID.
Elias Tsakanikos et al
This study reports on psychosocial functioning in Swedish adults with Asperger syndrome (AS) or high-functioning autism (HFA). A systematically selected sample of patients and relatives was interviewed concerning their psychosocial situation. The majority was living independently. All persons but one were unemployed. None was married and none had children. Only a few had some kind of partner. Most persons needed a high level of public and/or private support. The overall adjustment was rated good in 12 percent, fair in 75 percent and poor in 12 percent. Adult persons with AS/HFA have extensive need for support from their families and/or society. This information is important in order to provide adequate interventions that are in accordance with the expressed needs of the individuals themselves.
I. Engström et al
I'm only 28, so I'm hardly at a point in my life when I can look back through all of it and comment on whether or not it was good. In fact, when I look back on my life now, I see about 10 years of enjoyment and twice as many years of deep pain, abuse, and loneliness. I wouldn't trade the last few years for anything, though - I've had the chance to experience a good life. Not just a good life "for an autistic" (as if we can't have a good life), but a good life for any human.
Joel Smith
Being refers to aspects of the person, Belonging to aspects of how people fit with other people and places, and Becoming to aspects of daily activities that promote personal growth, development and adaptation to life.
Ontario Adult Autism Research, Support Network
Instead of depicting a future that is bleak and hopeless for Christopher, this article puts his future into perspective. The things that are mentioned here apply to just about everybody, not just persons with disabilities.
Lisa Ruble, Nancy Dalrymple
One of the most difficult challenges of dealing with an AS diagnosis in adulthood, for me, has been the reality that while I was finding all of this out there were no services to help in the necessary transition, adjustment, or understanding of what it will all mean in my life and for my future.
A.J. Mahari
There is little risk and great potential benefit to be derived from acknowledging the likelihood that as many adults as children could be diagnosed with autistic spectrum conditions if they so desired. It is no more speculative and far more compassionate to entertain such a reasonable notion than it is to categorically deny its possibility. There is no harm done to autistic children by acknowledgement of the existence of adults on the autistic spectrum. Such acknowledgment should not jeopardize the search for justice of families who have evidence that their children have been injured by vaccines.
Kathleen Seidel, neurodiversity weblog
Living arrangements for older adults with intellectual disability are an important aspect of service provision. However, relatively little work has examined service users' satisfaction and dissatisfaction with where they live. Interviews were conducted with 92 service users with intellectual disability aged over 40 living in residential accommodation or with parents or guardians. A questionnaire addressing service users' living arrangements was completed by 103 carers or guardians. Service users identified physical features of living arrangements, the provision of activities, and staff as primary contributors to satisfaction. Primary contributors to dissatisfaction were staff issues such as hindering personal independence, impatience and personnel shortages. Service users living with family or guardians were more likely to report being happy but also to report loneliness than those in group homes. Carers' responses largely mirrored those provided by service users but differences emerged with respect to appropriateness of existing accommodation.
Anne O Rourke et al
...academe is generally considered a more welcoming environment than most for people with autism. They get paid to talk at length about their area of interest in a realm where eccentricity and limited social skills are often seen as signs of genius rather than cause for scorn. "Universities are probably the place where we get the kindest treatment, where we are respected and valued the most," says Mr. Perner.
Michelle Diament
How Not to Feel Stupid When You Know You're Not: Self-Esteem and Learning Disabilities; Breaking the Low S-E Cycle; Stacking the Deck: Four Aces of S-E; Anger and Frustration: Manifestations of Low S-E; No More Pity Parties; Tim's Story; Readings
Get as many advanced degrees as you want and you are still likely to tank in the real-life world, even if it is the academic one. The trick for most of us is to master the basics. Think sandbox, then slide, then swing, then tire swing, then the monkey bars, and on up. That's where many of us, metaphorically, have to start. Unless we were extremely fortunate as children, many of us feel that were never given enough of a push to fill the pail, or make the sandcastle, or go down the slide without Mommy-Daddy holding us. If we sat in the swing kicking our little feet, not understanding how to make the swing "go" according to our bidding, well maybe somebody should have showed us! Maybe as of that moment, many of us feel as though we gave up, that we stopped trying at that point, and nothing's gone well for us ever since. Poppycock!
Roger Meyer
Successful self-advocacy is highly dependent upon the social and communication skills of the self-advocates, while the impairment of these skills is a primary component of the handicap of autism.
Self-determination is a heavily culturally laden concept and cultural values influence one's definition of self-determination
Ann Turnbull, Rutherford Turnbull
For some, help may mean occasional support and guidance in order to help them lead an independent life in the community whilst for others it may mean full-time support in a staffed home.
There are many adults and teenagers who have been recently diagnosed. They went through life the hard way, and are still experiencing difficulties due to their disorder. They need assistance to make up for the lack of proper help in their growing years.
Gary Waleski
More and more people with autistic spectrum disorders (including Asperger syndrome and High Functioning Autism) are now being identified, with health and social care professionals increasingly having to work with a whole range of clients/patients who have these conditions and who present with a range of different abilities and difficulties. There is a demand that these people should have their needs met through effective targeting of resources and through intervention, where it is required and is called for. However, in many respects such processes and strategies are complicated by the fact that the needs, wants and desires of people with Asperger syndrome and High Functioning Autism (also referred to as AS and HFA, respectively) remain largely unknown, outside of a recognition on the parts of policy makes and researchers that they are complex and protean. This is despite HFA and AS possibly being the most prevalent forms of autistic spectrum disorders.
Myles Balfe, Ting Chen, Digby Tantam
Alice Schlegel
Applications for Social Security Administration (SSA) benefits often fail because of incomplete or poor documentation. SSA makes it possible for persons to apply for SSI/SSDI benefits by phone. For persons I work with -- individuals with complex cognitive impairments and multiple physical health issues -- I do not recommend this approach. Phone intakes can result in mistakes much harder to correct as your claim makes its way through the system.
Roger N. Meyer
Children with good social skills have more opportunities for positive interactions with their peers, and enhanced ability to benefit from academic and prevocational training.
Marnell Hayes
His brain disorder is complicated and not considered to be severe enough by state doctors to warrant services. He is dependent on city mental health care and his ailing, elderly mother. Mostly, Stan has to navigate his disorder alone.
Adam Shemper
For a vulnerable adult, having people in your life who choose to be your friends can make all the difference. A support network can provide some continuity through the nightmares of frightening transition times, including the loss of parents.
Ontario Adult Autism Research, Support Network
This is a book designed to make you aware of the many unwritten rules which most people instinctively know and take for granted. Autistic people have to understand scientifically what non-autistic people already understand instinctively.
Marc Segar
We report a new self-report questionnaire, the Systemizing Quotient (SQ), for use with adults of normal intelligence... The SQ reveals both a sex difference in systemizing in the general population and an unusually strong drive to systemize in AS/HFA.
Simon Baron-Cohen, Jennifer Richler, Dheraj Bisarya, N. Gurunathan, Sally Wheelwright
Some people with Asperger syndrome will not require any statutory services. However, the majority of adults need understanding and support from the wide range of agencies they come into contact with.
To study the personality characteristics of adults with Asperger syndrome, and investigate the value of self-rating personality inventories, we administered the Temperament and Character Inventory (TCI) to 31 outpatients with Asperger syndrome. The TCI is a self-rating personality inventory that has been validated in the Swedish general population. The results were compared with age- and sex-matched norm groups. Participants with Asperger syndrome scored significantly higher on harm avoidance and lower on self-directedness and cooperativeness. Reward dependence and novelty seeking tended to be low. They also had significantly higher rarity scores, reflecting idiosyncratic perspectives. The most common temperament configurations were 'obsessional', 'passive-dependent' and 'explosive'. Character, reflecting conceptual maturity, was poorly developed in the majority of our subjects. The self-ratings of persons with Asperger syndrome thus indicated anxious personalities with coping difficulties in the areas of social interaction and self-directedness, a picture corresponding to the clinical descriptions of Asperger syndrome.
Henrik Soderstrom, Maria Rastan, Christopher Gillberg
Individualized funding is now recognized as a fundamental requirement for self-determination, enabling people to purchase, and therefore gain control over, the supports needed to enjoy meaningful lives in the community.
Ontario Adult Autism Research, Support Network
Welcome to my site about autism and advocacy - or, as I like to say, about a way of life that is a bit different but just as valuable as anyone else's. I am an autistic adult who wants to see my people succeed and prosper in this world. Unfortunately, there are a lot of difficulties we experience, only some of which have anything to do with our actual autism. Many of them deal with the way society sees and treats us. Through this site, you can explore the real difficulties we experience. You can also celebrate with me the beauty of autistic existence. There are even resources for other autistics - resources that can hopefully help us to overcome the difficulties we face.
Joel Smith
When you know both your 'strong suits' and your weak ones, you can learn to use your best abilities to help you deal with your difficulties—and to work toward your goals.
Barbara Rosenn
It's possible to have the intellectual and verbal skills necessary for university-level academic work, and at the same time to experience the social handicaps and other problems that characterize the autistic spectrum.
The literature on the health of adults with disabilities focuses on one disability compared to a comparison group. This study allows cross disability comparisons with the hypothesis. Adults with disabilities had higher odds of having common health conditions, compared to adults without disability in the same practice. A retrospective record review of 1449 patients with disability and 2084 patients without disability included individuals with sensory impairments (n = 117), developmental disabilities (n = 692), trauma-related impairments (n = 155) and psychiatric impairments (n = 485). The only two health conditions with statistically significantly increased odds for all groups with disabilities were dementia and epilepsy. Patients with developmental disabilities were less likely to have coronary artery disease, cancer, and obesity. Those with sensory impairments had increased odds for congestive heart failure, diabetes, transient ischemic attacks and death. Patients with trauma disabilities had increased odds for chronic obstructive pulmonary disease, and depression. Finally, psychiatric patients had increased odds for most of the investigated condition. In conclusion, there were many similarities in the risk for common health conditions such as asthma, cancer, coronary artery disease, depression, hypertension, and obesity, among patients with and without disability. Some of the conditions with increased odds ratios, including depression, seizures, and dementia are secondary to the primary disability.
Suzanne McDermott, Medscape
Many of the respondents who achieved the most academically or are the happiest with themselves as adults thrived on the support of involved, concerned parents and teachers.
Susan Martins Miller
If you are an adult who has recently been diagnosed with autism or Asperger syndrome and you don't know what help and support is available for you, read on...
National Autistic Society
Unless a major breakthrough in research occurs, the near half-million American children with autism, already straining the capacities of local school systems, are going to grow up with symptoms of the disorder. They will need varying degrees of care for the rest of their lives, and most can expect to outlive the parents who now tirelessly devote their lives to them.
Donna Koehn, Tampa Tribune
One of the big -- if not the biggest -- dependencies that the whole autism = thiomersal poisoning rests on is the existence of the so-called 'autism epidemic'. Without the 'epidemic' there is no rise in prevalence and without a rise in prevalence there is no mystery surrounding the causes of autism. In fact, if there's no epidemic then this refutes the idea that thiomersal causes autism as the amount of thiomersal (before its removal) in vaccines rose sharply. Without a corresponding 'epidemic' the whole shebang is dead in the water... One of the key points then become the existence of adults on the spectrum. If they exist in large numbers then there can be no real rise in prevalence and hence no epidemic... Whilst its impossible to prove or disprove that exact point its easy to demonstrate that there are a lot of adult autistics.
Kevin Leitch

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