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 - NYTimes.com
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 ...

Lifepages

... 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

  • site:lifepages.org [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 ...

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Monday, February 07, 2011

The expectations trap

Four months ago we learned lessons from two family bicycle outings. One was an educational failure. The follow-up was a memorable success.

No denying, I was proud of that one. I wouldn't have thought it possible just three years before. If we weren't willing to risk failure, we wouldn't established a new baseline.

That's why I was willing to try another crazy idea. This time we tried a mass nordic ski event after dark in unfamiliar territory. This went well beyond last year's Nordic ski resort.

We applied what we'd learned. We studied satellite maps of the ski route and the surrounding territory, developing and revising our primary and backup plans. We researched parking in detail. We took a car and drove the route at night -- that's how we learned event map's major parking area was now a massive hole in the ground. We adjusted our plans accordingly. I took both our special needs guys with me on the event day to collect our race bibs -- so they could see the parking and starting area in daylight.

We left early on event day, which meant we got the prime parking garage rather than our fallback option. At the event we adjusted plans; one of our guys needed to race, so we aborted a rendezvous and left ten minutes early.

It was easy. The only glitch was a bit of overheating while fussing with race bibs indoors. I expected to need more of our contingency plans. As it was, I had only to track the son who's prone to getting lost. His brother with the oddball savant visual abilities raced far ahead, and, as expected, materialized from darkness whenever we reached a stopping area.

It was easy, but maybe it was too easy. Now I need to wonder if I've fallen into an expectations trap.

The expectations trap is what happens around 9th grade in most schools. Instead of the slow, tedious, work of developing reading and other academic skills, teaching focuses on "social skills". These can be fun for all involved, but for some it's too easy. They could do better. The expectations trap is inside the comfort zone; it closes options too soon.

I think I need to move my expectations up.

 

National Sports Center for the Disabled - summer and winter recreation in Winter Park, Colorado

Colorado's National Sports Center for the Disabled is an amazing resource.

... Founded in 1970, the National Sports Center for the Disabled's mission is to positively impact the lives of people with any physical or mental challenge through quality adaptive recreation programs in over 20 sports. The NSCD’s impact on lives is direct, immediate and visible. Over 23,000 lessons are provided annually...

The NCSD is located in Winter Park Resort, Colorado (map info - route 40 west of Denver). They serve our community ...

ADD, Amputation, Arthritis, Autism, Behavioral Health, Bone Disorder, Brain Injury, Cerebral Palsy, Deafness, Developmental Disabilities, Diabetes, Down Syndrome, Epilepsy, Fragile X, Hemophilia, Learning Disabilities, Little People, Multiple Sclerosis, Muscular Disorder, Muscular Dystrophy, Nerve Disorders, Neurological Disorders, Paraplegia, Post-Polio, Quadriplegia, Respiratory Disorder, Spina Bifida, Spinal Cord Injury, Stroke, Substance Abuse, Vision Loss/Blindness...

Of course the winter activities (2010 brochure) are amazing. It's the place I'd take my family for a snowboarding or skiing vacation. The NCSD will arrange for travel package reservations and they offer scholarships. They offer the "NCSD Broome House" condo reservations particularly for NCSD participants.

There are summer options too (2010 brochure)...

... NSCD Sports Camps, rafting, kayaking, canoeing, special camps, horse pack trips, therapeutic horseback riding, mountain biking, overnight river trips, fishing, camping, and rock climbing...

Definitely a resource worth remembering.

So why am I just learning about This now? It's been around for forty years.

There's something broken somewhere ...

Monday, January 24, 2011

What can we learn from extreme dog training

Two stories about what dogs can learn.

The first is about teaching word sounds to a border collie. It is, as best anyone can tell, a true story.

Dog Might Provide Clues on How Language Is Acquired

He bought Chaser as a puppy in 2004 from a local breeder and started to train her for four to five hours a day. He would show her an object, say its name up to 40 times, then hide it and ask her to find it, while repeating the name all the time. She was taught one or two new names a day, with monthly revisions and reinforcement for any names she had forgotten.

... In three years, Chaser’s vocabulary included 800 cloth animals, 116 balls, 26 Frisbees and a medley of plastic items...

... The 1,022 words in Chaser’s vocabulary are all proper nouns. Dr. Pilley also found that Chaser could be trained to recognize categories, in other words common nouns. She correctly follows the command “Fetch a Frisbee” or “Fetch a ball.” She can also learn by exclusion, as children do. If she is asked to fetch a new toy with a word she does not know, she will pick it out from ones that are familiar...

The second story is from The Awl (via Brad DeLong)...

It’s a week before the biggest day of her life, and Anna Williams is multitasking. While waiting to hear back from the Ivy League colleges she’s hoping to attend, the seventeen-year-old senior at one of Manhattan’s most exclusive private schools is doing research for a paper about organic farming in the West Bank, whipping up a batch of vegan brownies, and, like an increasing number of American teenagers, teaching her dog to use an iPad.

For the last two weeks, Anna has been spending more time than usual with José de Sousa Saramago, the Portuguese water dog she named after her favorite writer...

Anna takes José Saramago’s paw in her hands and whispers in his ear. He taps the iPad and the web browser opens. José Saramago gives a little yelp.

“It’s entirely conceivable that a dog could learn simple computer functions,” says Dr. Walker Brown, the director of the Center for Canine Cognition, a research facility in Maryland. “Word processing, e-mailing, even surfing the web: for many dogs, the future is already here”...

Alas, the second story is a parody. It is fiction. After reading the first story though ...

Given enough time, patience, and interest a dog can learn the rudiments of language. It goes slowly. It takes insane persistence (Is Pilley Aspergerish?), but one word a day adds up over time. I'm sure someone, somewhere, is now training their dog to use an iPad. They will make the Awl story partly true (maybe not the word processing though).

There are lessons for those of us who work with special needs children ... teens ... and adults.

My eldest's verbal processing tests at the pre-primer level. He reads at somewhere between third and fourth grade. And yet, he does truly remarkable things with his iPhone. He continues to learn. HIs learning is slow, but faster than Chaser. Alas, he's not as keen -- unless one were to count the increasingly sophisticated iPhone games he plays.

Alas, he has only a few years of formal education left. I have some concerns, even now, about how much will be done in the next few years. "Life skills" are needed, but he is not going to stop learning at 19. I think, given time, he could read at the fifth or sixth grade level -- which starts to work him into the normal range. I suspect he'll never have strong receptive language, but he may do more with reading and writing. He already converses more effectively by text than by spoken language.

His digital skills are exceptional -- an order of magnitude better than some of his linguistic reasoning skills. There are things to work with.

Somehow I have to figure out how he will continue to be taught, and to learn, until he's at least fifty ...