OAARSN The Web

Autism Resources

Why Don’t We Hear About Adults?
A generation or two ago, almost nobody knew about Autism except the tiny proportion of families whose children were diagnosed. Now Autism is always in the news, especially the service needs of young children. Have adults outgrown their Autism or recovered? No…

Very few Ontario adults with ASD have appropriate supports to lead good and fulfilling lives in their communities. Some younger and middle-aged adults may have pretty good lives because of the dedication of their parents.

As elsewhere in the world, the timely attention to the needs of young children on the Autism spectrum has not yet been matched by concern for the needs of adults.

Almost all suffer from general assumptions that they have a poor prognosis as adults. Professionals and policy-makers may not think that they are worth much in resources.

Most adults diagnosed with classic Autism were not supported to develop communication and social skills and may have poor daily living skills. There are almost no resources to help them to continue learning.

Too many have restricted lives in custodial care with no support for their autistic disabilities. Some are incarcerated with no social contact and some die tragic deaths. Professionals, agencies and caregivers may see autistic adults as mainly challenging because of their severe behavioural problems.

Most adults who probably had the symptoms of ASD in early childhood were not detected, or were given other labels, perhaps with "autistic tendencies." Those who were not diagnosed at all may have had social and learning difficulties in the school years and, as adults, discover or suspect they have Asperger’s or high-functioning Autism (HFA). But they can seldom get help.

Autistic adults who live without support may be reclusive or eccentric; they may be labeled with various mental health disorders and at risk for severe depression and suicide.

What have we learned of the needs and abilities of adults with Autism?
Autism is highly complex and affects each person in a unique combination of ways. Its multiple causes are not yet well understood.

Autism involves disorders of the brain, neuroimmune and gastrointestinal systems. The central impairment shared by people with ASD is general difficulty with social communication and relationships. Other symptoms may include hypersensitivities and reactions to any or all sensory stimuli, inability to speak or other difficulties with language, intolerance of various foods and drugs, sleep disorders, seizures, low muscle tone, movement differences, unusual fears, and obsessions with routines and order. The presence and severity of these symptoms vary in individuals. Those most severely affected may express their pain and frustration in behaviours that can hurt themselves and others.

A distinctive feature of people with ASD is the unevenness of their abilities and disabilities. While their development is affected by their disorders, they are not necessarily intellectually handicapped. Some who cannot speak can express mature and insightful thoughts when given the chance to communicate in other ways. Some people with ASD are highly intelligent and some have remarkable abilities in special fields including music, art, numbers, computers, and spatial reasoning. But these special abilities are usually at odds with their practical and social disabilities.

Whatever their original symptoms, autistic adults may also bear the scars of faulty assessments, treatments and teaching in the childhood and early adult years.

Perhaps the greatest difficulties are the barriers raised by other people’s critical perceptions, attitudes and expectations.

What factors and strategies, starting in the school years, lead to best outcomes for adults with ASD?
1. A focus on abilities more than on deficits, and strategies based on observations of “what helps?” to balance assessments of “what’s wrong?”

2. Respect for loving families as the experts on their daughters and sons with ASD and for their uniquely valuable experience and sense of responsibility.

3. A personal support network of friends of all ages who care and share time and interests.

4. Plans and strategies that consider each person as an individual. The more complex the disorder, the more individualized the supports must be.

5. Constructive co-operation among all involved to support a good, whole life of each person with ASD, including, as needed:

Towards Better Lives and More Secure Futures for Adults with ASD
Start early, even from childhood, and keep evolving these interrelated strategies. Find more information about these good ideas and practices through searches of this and other websites, our Books on the Autism Spectrum section, and the OAARSN bulletins.

1. Encourage self-expression and choices by whatever means
See the humanity, abilities and potential in your son/daughter, however severely challenged. “Listen” to them (even when they do not speak) to understand their point of view and priorities. Observe and record what strategies work best. See our Bridges-Over-Barriers section in the OAARSN Communications Centre.

2. Find and keep friends of various personalities, ages and abilities, who get to know the person very well and can support and continue the parents’ roles Friends can support one another as well as the person when organized as a Circle or Personal Support Network. Each adult with ASD needs friends and allies in addition to family and those who are paid to be in her/his life.

3. Plan with the person
Planning tools developed by Inclusion, such as PATH (Planning Alternative Tomorrows with Hope), MAPS and CIRCLES, are helpful in working through transitions, envisioning a good life and devising strategies to attain it.

4. Be creative and flexible in setting up key parts of the person’s plan for a good life
Don’t be limited by the traditional service system. Consider what’s really needed and find ways to make it happen. Have a clear understanding of your general goals. But also be open to the opportunities, even serendipity, at some unexpected turns in the PATH.

5. Consider the best kind of living situation for each person
Adults with ASD need choices. A person with hypersensitivities may need her own home, supported in the ways she needs and shared with companions she chooses. Guelph Services for the Autistic (GSA) is pioneering a model of home ownership that includes choice and self-direction by the person, longterm capital investment by the family, support circles and networks, and recruitment and matching of lifesharers and supportive companions. See the GSA section in the OAARSN Communications Centre.

6. Daily activities should be real and fulfilling and include continued learning, healthful exercise, and contributions to the community
Each person should have a way of life that is uniquely suited to his needs and interests. He should be able to comment and make requests and suggestions. Support workers should be chosen by the focus person and carry out their wishes.

7. A good life must be sustained, beyond the lives of parents
A new mechanism is the Aroha, an incorporated entity of personal empowerment and support (like a microboard in British Columbia). An Aroha can give good friends of the person and parents the legal powers to strengthen and continue family efforts. An Aroha can own property, and receive and manage resources to match needs and wishes.  See the Aroha Entities section in the OAARSN Communications Centre.

Links to Other Resources for Persons, Families and Caregivers Living with Autism
Electronic information about Autism has increased vastly, to 19.1 million references on the World Wide Web in March 2009, more than 63 times the number in early 2000 when the OAARSN website was launched. Adult Autism resources were very scarce then, and Autism issues in Canada hardly registered. In March 2009, an Advanced Google search for "autism spectrum disorders" combined with the keywords “adults” and “Canada” and excluding “children” finds 1,400 hits, three times as many as three years ago.

Some professionals and commentators completely pan Internet resources. Certainly, as with any innovation that is freely accessible, there is scope for error and misrepresentation. But the potential value of being able to look up new terms and to connect with others far outweighs the risks. A wise Internet searcher will look at a fair number of sources, looking for confirmation of what seems a good explanation, strategy or resource. We know that access to the Internet has empowered many who live with Autism. Of course, before embarking on any course of treatment, we should seek professional advice.

In the first edition of this website, we provided large numbers of links to all kinds of potential resources, throughout the OAARSN site. This time we are more selective. People seeking information and help can now browse the Web more easily. We also want to avoid having to update URL links to other websites too frequently.

We suggest the following advice for search strategies to be used with the Search function for OAARSN, and for the entire World Wide Web.
1. Think of the keywords that best match your interest, to type in the Search window.
2. Be specific in your keywords: just “autism” is far too general.
3. Try Google Advanced Search or Google Scholar, especially if you are seeking research information. Using Advanced Search to look for information about biomedical issues for adults with autism, those keywords would all be entered and you may also specifically exclude “children” and “youth” to narrow your search.
4. You’ll probably want to avoid the sponsored links. Otherwise, the links are displayed more or less in order of likely relevance to your keywords.
5. A fair portion of the hits may be personal anecdotes or questions or advertising of products or services, rather than balanced expert advice.
6. Don’t believe everything you find. Try to weigh up the evidence, look for confirmation in several sources, and consider the relevance to your situation and needs.



OAARSN The Web

We recommend this tutorial guide to further searching on the Internet
Berkeley Library

Also Autism Data: a brief guide to searching
National Autistic Society UK
as well as
Research Autism of NAS

More specialized resources may be used in specific fields of concern:
PubMed for example, is a service of the US National Library of Medicine that includes over 18 million citations from MEDLINE and other life science journals.

Autism Ontario, incorporated in 1973, now has more than 30 regional and local chapters throughout the province. Find links to all these chapters in window at top right of the home page. Since 2004, Autism Ontario has led a partnership group of Ontario organizations and groups in advocating with the Ontario Government for the well-being of adults and youth with ASD. See more about these efforts including details of the manual: Living with ASD: Adolescence and Beyond (2006).

Forgotten (2008) is a public policy paper addressed to the Government of Ontario, with recommendations for supports and services for Ontario adults with Autism & adults with Aspergers.

The Geneva Centre for Autism in Toronto offers resources, training and conferences for professionals, parents and other caregivers. Its services are mainly focused on children and youth with Autism, but some approaches are also useful for adults.

Kerry’s Place Autism Services, incorporated in 1974, pioneered specialized services for adults with Autism in Ontario. It now offers a comprehensive range of supports, including residential and other living supports for adults, as well as programs of community outreach, clinical services, supported independent living programs, respite care and crisis support for adults, youth and children with Autism Spectrum Disorders in several Ontario regions.

AutismConnects is a “Virtual Community of Autism Spectrum Stakeholders.” People with ASDs, their families and friends, educators, therapists, service providers, organizations, researchers, legislators and volunteers – anyone with an interest in Autism and a desire to improve the health and quality of life of people with ASDs – are invited to become members.

Aspergers Society of Ontario was founded in 2000 to provide education, resources and support to individuals diagnosed with or considering a diagnosis of Asperger Syndrome.

Autism Society Canada is a federation founded in 1976 of Canada-wide provincial and territorial Autism societies, that is committed to advocacy, public education, information and referral, and support for its regional societies. Look for links to Report of the Advisory Committee of Adults with Autism Spectrum (2007) and Life with ASD: Resources for Adults and Youth.

The National Autistic Society (UK), founded in 1962 and thus the world’s oldest autism society, offers a rich variety of resources on its website and is a model for other national and regional organizations. To mark its 40th anniversary, the NAS has focused sharply on adult issues, with its influential Ignored or Ineligible?: The Reality for Adults with Autistic Spectrum Disorders.The I Exist campaign, launched in 2008, highlights the impact of the lack of support on adults with autism and the action that is needed to bring real improvements to people's lives.

 

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