Autism Society of America: Summer Tips

Last summer we passed on our experience with years of autism on the road. It was tough when the kids were younger, but our last few trips have been fairly agreeable. They even did pretty well when my back put me flat on the van floor for a few days.

We're going for another two week road trip this August, and everyone's looking forward to it.

So we can vouch for some of these Autism Society of America Summer Travel Tips (my comments in square brackets)

• Plan in advance. Call ahead and inform the airline, hotel, resort and cruise line of the individual’s situation and inquire what special accommodations - fridge, inside room - are available. [We stick with road trips or relatively solitary low stimulation cabins. I don't think we'd try a cruise. Fridge inside the room - definitely. Calling ahead? Never have. It would just make most places too anxious.]
  


• Bring the individual’s bedding if you think that will make him more comfortable. [We bring "blankies" and other comfort objects.]
  


• Be realistic in selecting vacation destinations with environments you believe the individual can handle. [We like to get experience first in more limited environments. We've gradually extended our airplane distance.]
  


• Book low season on a cruise or at a resort so there will be fewer guests and the staff will have more time to devote to your needs.
  


• Travel by car if flying or other public transportation seems too difficult. [Definitely.]
  


• Choose hotels/motels with kitchen suites or room service so you can eat some of your meals in your room. [Definitely]
  


• MP3 players with headphones, loaded with favorite music, can soothe individuals who are disturbed by noises. Personal DVD players can also help make a long trip more enjoyable. [Absolutely, but we stagger them. It's easy to overdose. Music for a while, then books on tape/CD, then one movie a day.]
  


• Don’t hesitate to explain the individual’s situation to others you may encounter, including flight attendants, hotel staff, employees at the amusements you visit, and other vacationers. ["Autism" is a good cover story for a lot of things.]
  


• Prepare the individual before and during the trip on what to expect that day. [One of our kids needs a pretty detailed schedule, but he's surprisingly good about deviations. He just has to know the plan.]
  


• Adhere as closely as you can to the individual’s normal routine. [Huh? The normal routine doesn't involve travel. Maybe they mean bedtime rituals?]
  


• Whatever happens, stay calm. [When one parent gets stressed too much, they take a walk. It would be tough to do it solo.]

The perils of judgment

Take one:

Two children, one dog, one weather beaten father. July day, maybe a bit hot. Lovely though.

One child shouts too much. The other seems old to be so cranky and tearful. Dad seems a bit passive. Really, he should put his foot down.

Parental grade: C-, and that's only because fathers get off easy.

Take two:

Two children with autism and a few more challenges besides. A day of bicycling (yes, and that was a great victory x 2) with Dad to a secret trail, rappelling down a bluff face to the river, playing with the dogs, tossing balls, drawing in the sand, exploring the river, drying sandy feet and managing wet underwear.

Constant negotiation, pushing the envelope of abilities and anxieties. The dog's pretty easy, but she gets upset if she can't see and touch all of her pack - especially when she's in her bike trailer.

Parental grade: Off the charts that neurotypical parents use.

Me, I don't judge nobody.

Tar Heel Reader - online picture book library

Years ago I thought about starting a web site for friends and families to create short picture books for children with reading difficulties.

I never got very far, but, happily, the University of North Carolina went all the way (their reading center also sponsors the summer literacy program at Camp Courage Minnesota our son recently completed). I've read a few of these online picture books and they're really quite good.

Tar Heel Reader

... Welcome to the Tar Heel Reader, a collection of free, easy-to-read, and accessible books on a wide range of topics. Each book can be speech enabled and accessed using multiple interfaces (i.e. switches, alternative keyboards, touch screens, and dedicated AAC devices). The books may be downloaded as slide shows in PowerPoint, Impress, or Flash format.

You may write your own books using pictures from the huge collection at Flickr or pictures you upload....

... We have books that are intended for teenagers who are just learning to read. You may find some books that are inappropriate for your students; don’t use those. We recommend you learn about the Favorites page as a way to present your students with reading choices that you approve...

.... This site is a result of a collaboration between Center for Literacy and Disability Studies and the department of Computer Science at the University of North Carolina at Chapel Hill.

We'll see how well they work with our struggling reader.

I've asked them if they'll look into a version of the site optimized for an iPhone/iTouch.

Update: they have a blog, but as of 7/3/09 the feed doesn't work quite the way one would expect. Try this URL instead: http://tarheelreader.org/category/announcements/feed/. It worked for me.

Behavioral therapy for emotional disorders

This NYT article was about behavioral therapy for so-called "borderline personality disorder", which could better be renamed "emotional disruption disorder" ...

Personal Health - An Emotional Hair Trigger, Often Misread - NYTimes.com

... Dialectical behavior therapy, a derivative of cognitive behavior therapy, helps patients identify thoughts, beliefs and assumptions that make their lives challenging and then learn different ways of thinking and reacting.

In effect, Dr. Linehan tells patients, “Your problem is that you don’t know how to regulate yourself, and I can teach you how.” She said thousands of therapists have been trained in dialectical behavior therapy, and many others practice it without special training...

I'm generally sympathetic to cognitive therapy approaches. I like the idea of teaching adults to recognize dysfunctional thoughts and assumptions and manage them directly.

I think all adults learn this as a part of getting wise and wizened, the trick is to teach it more quickly to people who have a harder time learning self-regulation.

Early intensive intervention in autism - what's the evidence?

In the past six months I've been repeatedly reading about the immense value of intensive early intervention in the outcome of children with cognitive disorders and autism.

This surprised me. I follow the literature from a distance, and I don't remember a landmark study that defined the clinically significant (rather than statistically significant) benefits of intense early intervention. I especially don't remember a study describing the kind of early intervention.

I figured I'd missed something, so I did a quick review and found these studies ...

• One-year follow-up of the outcome of a randomized ...[Child Care Health Dev. 2009]
• How can early intensive training help a genetic disorder?
• Cochrane review of parent-mediated early intervention (2003)
• Behavioural and developmental interventions for autism spectrum disorder: a clinical systematic review. (2008)

Turns out I missed .... nothing.

There's no significant new evidence, and damned little quality evidence of any kind to guide recommendations for early intervention of any kind by any party. The "conventional wisdom" about "intensive early intervention" appears to be more wishful thinking than evidence based.

This is damned frustrating. Intensive interventions strain financial and personal resources for society and families. In the absence of evidence we don't know how best to spend that money, time and energy -- on speech therapy, cognitive exercises, early education programs, adaptive sports, parental training, respite care, behavior modification programs, alternative communication strategies, cosmic ray therapy (ok, I made that one up) ...

Sigh.

Ok, now back to our regular programming.

Special needs and mobile phones: Why we're starting young

In our community neurotypical children begin carrying mobile phones between the ages of 10 and 15. Many parents prefer to defer use of a mobile phone as long as possible.

How should cognitive disabilities and special needs affect the timing of first phone use?

Since cognitive disorders such as ADHD and autism may limit abilities to use a phone effectively or correctly, one approach would be to delay or defer use. Of course even a child with strong executive functions can lose a phone, so there are strong economic reasons to delay use.

We've chosen instead to move the use date forward, to the earliest time that a cognitively disabled child is likely to be able to follow basic phone rules.

I was mildly surprised by this. I thought we'd favor delay, but when we thought things through the reasons for moving sooner became quite strong.

We are starting out with a minimal cost phone and a simple pay-as-you-go T-Mobile plan. When the money is spent the phone stops working until we "refuel". For now we share a single number and phone, though if Google Voice ever goes live each child will get a lifelong GV number.

Our reasons to move now are:

1. The phone is a mild status symbol, a sign of "normality". For a cognitively disabled child status symbols of any kind are exquisitely rare. For us the middle school years loom grimly ahead.
2. Mobile phones are almost essential now. We can start training in the pre-adolescent/early adolescent years when we have more leverage.
3. Once our children are able to safely use a mobile phone, we'll be able to experiment with different social and independent settings. They will have more learning opportunities.
4. The phone will open some opportunities for "at a distance" social interactions; we want to see if this will provide options for our ASD kids.
5. Mobile phone skills are essential for many employment opportunities. Training early is an advantage.
6. At this time we can afford to replace a lost low end phone.
7. Location tracking is becoming common. This is valuable for all children, but especially valuable for children who are easily lost (many Asperger's children).
8. The future.

The last is a big reason. I've owned an iPhone for a year now. The opportunities to deliver cognitive aids, training materials, and support systems through these mobile- computers-that-you-can-by-the-way-talk-on is immense.

Just as computers opened (fitfully and erratically) new opportunities for blind persons, so too may these technologies allow the cognitively disabled to take on new life opportunities and employment. We want to explore these options and leverage what's available starting now. Some time in the next 1-3 years the child phone will be an iPhone-equivalent.

To improve the chances of return if it is lost we've replaced the "wallpaper" with a photograph of a handwritten plea to return the phone.

Lastly, this is taken from our current "phone poster" ...

Phone Rules


1. Don’t dial 911 unless it’s a serious, real, emergency.
2. Only dial from the Names list.
3. Don’t call the Voice Mail number.
4. Keep the phone in your pocket when it’s not in use.
5. Remember your phone manners.
6. If you break the phone rules you lose your phone day (or days).
7. Only use the phone on your phone day.

Remember


1. We know who you call.
2. Anyone you call gets your phone number.
3. It costs us money when you use the phone.
4. If you do well with the phone we’ll add other names to the number list. You will need to pay two stickers for each call.

iPhone 3GS - accessibility, vision, and speech

The iPhone 3GS will be on sale June 19th. It's the first phone/mobile device I know of to market accessibility features. Since it has no physical keyboard, that's arguably overdue.

The accessibility feature set includes UI zoom, speech recognition (commands), screen reader and speech UI. The device also includes a 3 megapixel camera with broad light sensitivity and autofocus including macro focus. The iTouch 3GS, due out in the fall, will have similar features.

This suggests several applications for persons with disabilities:

1. Magnify text and other sources: This is trivial. The iPhone 3GS will be fun for macro microscopy, but it will also be a very practical text magnifier.
2. Read text: The iPhone 3GS has sufficient resolving power to turn text images to text, and it can read the results.

The iPhone 3GS is a very interesting platform for delivering solutions to persons with a range of sensory and cognitive disabilities.

Sundry notes from a meeting on special needs and the law

1. Parents of special needs children may wish to initiate guardianship proceedings before a child turns 18. These are typically limited and are reviewed yearly by the courts. They can be reversed at any time.
2. Adults over 18 can pay rent to parents to live at home, this can reduce income that may count against social security/disability benefits.
3. A supplemental needs trust can own a home that a special needs adult lives in. (See also: 529 plan problems and special needs).
4. 529 plan problems and special needs (important)
5. Relatives naming a special needs child or adult in a will should name their supplemental needs trust as the beneficiary.
6. Wills should be supplemented by a Letter of Intent that can guide ongoing care and support of a special needs adult or child after the death of their caregiver. This is not a legal document, it is typically a summary of their likes, dislikes, quirks, preferences, etc.
   

A grave problem with 529 plans and special needs children

Many people fund 529 plans to support a child's post-secondary education or training.

Please consult your attorney before acting on anything here, but our understanding is that this is a problem for special needs children.

The trouble is that if a child has 529 assets in their name when they turn 18, the assets over $3000 mean they will not qualify for disability associated medical assistance until the assets are depleted.

Instead some advisors suggest the creation of a supplemental needs trust (not a special needs trust). These can shelter funds for a special needs adult so that disability and medical assistance support is not impacted.

The supplemental needs trust can also fund education. For example, one could purchase tax free municipal bonds in the trust. The fund trustee, usually a parent or family member, can then use the funds to pay for education or training.

Some employers will also allow certain high income employees to defer compensation. It may be possible to then shift the deferred compensation to the fund. This definitely requires attorney review!

If you already have a 529 plan assigned to a special needs child, it can be shifted to another family member before the child turns 18.

To repeat -- you should not act on anything in this post without consulting a very experienced financial consultant or attorney. For example, Wikipedia has conflicting statements on the topic.

Software services for cognitively disabled persons

Sure, this is marketed for "elderly" users. The reality is that it's a solution for cognitively impaired persons, it's just that a lot of them are elderly.

Not all though. This approach is what we need for many young adults and adults with cognitive disabilities ...

Easier E-Mail for the Older Generation - The New Old Age Blog - NYTimes.com

... Mr. Hughes got together with his business partner, Ali Syed, to design an e-mail system that no senior could resist: no logins or links, no ad boxes or news flashes, no pokes or Twitters — only personal e-mail messages and photographs, with a caregiver making sure that everything is running smoothly. 

They named it PawPawMail and created a Web site, pawpawmail.com. Anyone can use the software for $5 a month and run it on any virtually P.C. or Mac, including old clunkers gathering dust in the back of closets.

... What distinguishes PawPawMail from other programs is that it is a managed system aimed at caregivers as well as seniors. “PawPawMail is built entirely around the idea of two users,” Mr. Hughes said in a recent e-mail message. “The senior user who actually uses the e-mail account, and the caretaker/manager who helps set the senior up, gets his or her address book going, and screens mail from unknown sources to prevent contact from all the ridiculous number of scams that are directed at seniors...

This is something I've hoped to see for some time, and that I've often contemplated doing myself. I hope Mr. Hughes business grows well.