Wednesday, April 20, 2011

Adult prognosis of autism syndromes - expert anecdotes

I am not aware of any good academic studies on the adult outcomes for children with autism syndromes. The presumed diversity of the underlying injury and recovery mechanisms makes hard research even harder. So the best we can do for now are anecdotes from clinicians with longterm experience ...
Experts Discuss Autism's Long-Term Course -
Several readers had questions about the range of adult outcomes in autism and how treatments may affect outcomes in individual children....
More and more individuals with autism are now able to function independently as adults. This is a major change over past decades, probably reflecting earlier diagnosis and more effective treatments. There is a very good summary of this in a chapter by Patricia Howlin in the Handbook of Autism (2005, Wiley).
Unfortunately not every child gets better. Sometimes the outcome seems to relate to the severity of the autism in childhood. Individuals whose disability is more profound continue, as adults, to need considerable support and help. It is unfortunately the case that for this population, services are often minimal, research is sparse and resources are lacking. The federal government has identified this as a priority area in autism work, and rightly so.
But even when we are fairly optimistic about an individual child, he or she may not do well as an adult. This is one of the reasons those of us who have been in the field for a long time are very careful about predicting the future to parents. We can only talk, in general, about what on average are good or bad prognostic factors.
For individuals with autism who can go on to college, a number of resources are available on the Yale Child Study Center Web site, including books and links to programs. Options range from small and very supportive programs specific to individuals with autism and related disorders, to traditional colleges and universities. Our book, “A Practical Guide to Autism,” also has a chapter on the topic of adults and discusses college services.
Daily living and adaptive skills, along with organizational skills and abilities, become even more important during the college years. It is important that students and parents realize, though, that changes in the law (the Americans With Disabilities Act now applies to such children) mean that college is not a right, and that those with autism can and do get expelled. Issues relating to sexuality and apparently inappropriate behavior are frequent reasons cited.

Saturday, April 16, 2011

Minnesota Life College adding community college features ...

This reminds me of a New Mexico residential training program I blogged on. I found it from a link on the Autism Speaks MN adult services directory ...

Minnesota Life College

... Beginning in the Fall of 2010, Minnesota Life College will add a new component to our program curriculum. In partnership with Minneapolis and Community Technical College (MCTC), we will provide our students the opportunity to experience a traditional Community College or Vocational Technical program, through a specifically designed curriculum that includes the ACCUPLACER test, study strategies, organization of work and time, tutoring and a 2 credit ‘Strategies for College Success’ course at MCTC. This component is designed for the MLC student that wants to see if a Community College or Vocational Technical program is the next ‘right’ step for them during or after MLC...

Transition Tool Kit from Autism speaks

Autism Speaks [1] has put together a Transition Tool Kit targeting families with special needs children ages 14-22. The goal is to support transition into the community when school services end.

The kit is downloadable, but as best I can tell the kit is the same set of PDFs that are found on the above page. An "online appendix" is a curated set of links to additional information.

The kit is pretty generic, because state rules vary [2]. Autism speaks has state resource guides (ex: MN) with sections on adult transition. Minnesota's data is a well done list, and it includes a state specific transition guide.

I'm including all of MN specific information in my MSP special needs custom search engine.

[1] In the past they've been associated with the immunization obsessed, but I wonder if they're trying to get clear of that crowd.
[2] At some point, do we relocate to a state with better services? What happens when millions of retired adults begin driving their mobile homes around the nation, desperately seeking dwindling services for their adult children? Just wondering.

Adapting to fewer resources for special needs children and adults

The future is looking kind of gloomy for most Americans ...

Care of special needs adults in post-employment America

... the Great Recession grinds on. The percent of employed adult Americans (employment-population ratio) is now back to where it was in 1976, when most women weren't in the workforce. The annual incomes of the bottom 90% of US families has been flat since 1973...

Some Americans are astoundingly wealthy, but most of us are not. The direct and indirect costs of care of a disabled child, or adult, means special needs families were stressed even when American social supports were relatively robust. Now things are getting harder ...

... Many young adults with autism have transitioned into large residential systems, whether group homes or institutions, offering round-the-clock services. But waiting lists can be long. And increasingly, in an effort to stem costs, states are moving away from the group home model into family-based care, a trend that started about 10 years ago.

... Nationwide, 59 percent of people who receive autism services are living with their families, according to Mr. Lakin...

... Don Meyer, the founder and director of the Sibling Support Project and the creator of Sibshops, a network of programs for young siblings of children with special needs, said: “Parents need to share their plans for their special-needs child with their typically developing kids. After Mom and Dad are no longer there, it is likely it will be the brothers and sisters who will ensure their sibling leads a dignified life, living and working in the community.”...

We are now seeing long group waiting lists in Minnesota, yet we aren't yet seeing the direct cash transfers to families that are reported in Connecticut, Arizona, Vermont and New Hamphsire. In place of group homes we now have "housing access services" -- suited for persons who can live independently.

We're going to have to figure out how to adapt to this. I have ideas, but I need more people ...

Thursday, April 14, 2011

The twilight of "schizophrenia"

Neurologic disorders, alas, are not going away. The concept of "schizophrenia", however, is shuffling off the stage.

Today's obit comes from Kwang-Soo Kim, a stem-cell scientist at McLean Hospital in Belmont, Massachusetts:  "These disorders are not really disorders. There's no such thing as schizophrenia. It's a syndrome. It's a collection of things psychiatrists have grouped together."[1]

Just like autism. Autism is a collection of "things" psychiatrists have grouped together, sustained by law, regulation, tradition -- and the current lack of a better alternative.

[1] Schizophrenia 'in a Dish': Scientific American 4/13/2011

See also:

Monday, April 11, 2011

Google Custom Search - Special needs services in Minneapolis and St Paul

I'm still experimenting with this, but I've created a Google custom search engine for special needs services and activities in the Twin Cities region: Google Custom Search - Special needs services in Minneapolis and St Paul.

I've also embedded the search engine into the right hand side of my blog page.

Lifepages - a MSP catalog of activities and resources for disabled persons

This was mentioned in a recent Highland Friendship Club meeting ...


... Life Pages was developed with people with disabilities in mind, but the site is truly useful for everyone. Life Pages is a great way to keep track of activities around town that you might not otherwise know about. Anyone can create a profile, which allows you to save favorite activities and sign up to receive e-mail alerts when new activities are added. The site has one feature, invitations, which is available only to Partners In Community Supports (PICS) member agencies...

The site footer says "copyright 2005" and the activities calendar was empty. I browsed some categories and saw some I know, but the search function doesn't seem to work.

On the other hand a Google search of the form

  • [search terms]

works well [1]. It allowed me to find the entry for the Institute on Community Integration ..

Home | Institute on Community Integration (ICI)

... Welcome to the Institute on Community Integration. We are a federally designated University Center for Excellence in Developmental Disabilities (UCEDD), part of a national network of similar programs in major universities and teaching hospitals across the country.

As a UCEDD, the Institute is funded under the provisions of the Developmental Disabilities Assistance and Bill of Rights Act of 2000 by the Administration on Developmental Disabilities in the U.S. Department of Health and Human Services. The federal law provides funding to several other Minnesota organizations: the Minnesota Governor's Council on Developmental Disabilities and the Minnesota Disability Law Center...

Clearly it's an old site, but there's still a great deal of information there.

[1] Or you can try this custom search engine I'm playing with ...