Delusional aversion in special needs: maladaptive learning?

As #1 moves to adulthood he shows many cognitive improvements — including better planning abilities. Improvements in some areas inevitably expose disabilities in other areas; we must then choose which to work on and which to wait on.

One of those newly defined disabilities is something we have started to call “delusional aversion”. For example - a sudden, inexplicable and emotionally intense aversion to a mountain biking site. If you didn’t know him better you’d think some terrible and unspeakable secret trauma had occurred there. That does not seem to be the case — though we can’t rule out some minor issue like someone speaking sharply to him, or some brushing grass creating an unpleasant sensation.

Once these aversions develop they are strong and persistent. You could not, for example, pay him enough to put a big bag under his bike seat. He will often produce “explanations” for the aversion, but they are illogical. If pressed he will respond with angry speech. They are classic “fixed beliefs without rational explanation” — delusions in other words. I suspect they are structurally not all that different from the well studied delusions of schizophrenia and they, of course, are very much like phobias.

We think of these delusional aversions as a form of dysfunctional associative learning. He associates something unpleasant with a location (human memories are strongly bound to place), and his disability rapidly amplifies a “single-exposure” learning circuit. I suspect this is a fairly common issue with dogs and other learning animals, but most humans are better able to control these associations. He cannot.

The accumulation of aversions is disabling across a wide range of activities of daily life. So this is a problem we’d like to address.

Naming and framing a cognitive disability is a first step to mitigating it — but we don’t yet know the next step. Presumably we can borrow from techniques used to treat phobias, particularly desensitization and association-subsitution. That’s hard and slow work though, and he’s very difficult to motivate. He does not see these accumulating aversions as a problem, and it’s hard to treat a problem a person doesn’t have.

We may try a bit more of a cognitive tack. This is definitely a reach — introspective cognition is very hard for him. It is not, however, impossible. If he can begin to label his aversions as non-rational learning…

(Incidentally, as one approaches guardianship age these are things to note down for the benefit of court hearings.)

You never know ...

One of our family's big achievements in our early years with special needs and autism was teaching both boys, #2 with classic autism (now "Aspergers") and #1 with more complex disabilities, to swim.

This took years of persistence and patience, fueled by Emily's hatred of preventable drowning. Try and fail. Try and fail. Pool one and two. Teacher five and six. Again and again. Money spent and lost - more than many could afford. Private and group. Family practice.

After years of this they could swim enough. After that it was improvement. #1, if he were motivated, could be competitive in butterfly -- a stroke I can't do. (I'm a strong swimmer.)

#2 just passed his "pre-lifeguard" course.

You never know.

Configuring location sharing on an iPhone at minimal cost

For some special needs children location sharing is critical — but the last time I surveyed options they were all costly and troublesome.

For us location tracking hasn’t been that critical, but #1 is now bicycling around the Twin Cities. He’s a good cyclist (so far), but location sharing is becoming more important.

He carries an iPhone 4s (inherited from me) so we went with that option. We switched from H2O wireless ($40/year, but no data) to a SIM from ptel - America’s cheapest iPhone data solution for low data use. We did the tedious configuration needed to restrict cellular data use to only low bandwidth high value apps including restricting access to cellular data controls so he couldn’t simply reenable them.

This gave us “Find My Phone” location tracking - which is pretty good. (Always check that this is working after configuration). We locked his iCloud settings in Restrictions so this can’t be changed.

Find My Friends.app (Apple download) is more convenient though. You can disable app deletion to keep it on the phone, enable shared items, then lock the settings in Restrictions. (He can track us too - least we can do.)

This setup is NOT for novices, but if you’d like a cheap iPhone tracking solution seek out a friendly geek and they can figure it out from this short post.

See also:

• GPS tracking for an impulse-control teen 7/2012
• Special needs and mobile phones: Why we’re starting young 6/2009

Update 10/26/2014: This has worked very well. He gets reward tokens for carrying his phone and leaving it on, and he’s happy with that. Being able to track his rides has been a huge anxiety reducer. There are points where we lose his location for a few minutes, but in general it’s reliable.

Smart home, DropCam, and special needs

Google, the surveillance company, recently acquired Nest which has now acquired DropCam.

As a currently independent adult I have a deep suspicion of where Google is taking us. As the parent of soon-to-be-adult children with special needs, however, Google subsidized surveillance technology is good news. I think (hope) that surveillance and communications technology will allow our adult children to function more effectively in an extremely challenging environment.

In a few months, once the acquisition has settled a bit, I’ll evaluate a DropCam product.

(I’d had hopes that Apple would do some good things in this space, but I’m unimpressed with Apple’s overall direction.)

Autistic "swingers" should consider inline skating

I touched on inline skating in a previous post about exercise for the autistic teen, but after a recent skate with #2 I think it deserves a post of its own. To explain why, I’m going to start with a novel way to divide up the “autism” world.

There are lots of ways to name and classify variant minds, and most of them are headed for the trash heap. In that context I think we’re free to name our own. So today I’m going to divide the world of non-adaptive [1] variant minds into swingers and unswingers.

Swingers are the autism-spectrum teens and adults who love to swing. They are the teens who tear apart the Rainbow play sets built for children [2]. Unswingers may share the legally useful diagnosis of “autism”, but they have no interest in rhythmic motion.

Swinger and unswinger autism isn’t a typical diagnostic divide, but I suspect it’s a useful division — with implications for health and behavior. We have kids on both sides of that divide — one swinger and one unswinger.

Which brings me back to inline skating. #1, the unswinger, has no interesting in inline skating outdoors. He can’t explain his feelings verbally, but my guess is he considers it dangerous and uninteresting.

On the other hand #2 is a swinger, and inline skating is one of the few outdoor activities he clearly enjoys. Cross-country (nordic) skiing is another one. In both cases, but especially with inline skating, there’s a rhythmic motion of core muscles and a sensation of falling and rising, floating and flying. In other words, a swinging sensation.

#2 has the typical motor coordination problems of Asperger’s syndrome, but he’s a strong swinger — and an increasingly strong inline skater. His technique is still weak, but over many years it’s slowly getting better. More significantly, he’s comfortable over urban streets and sidewalks — terrain that defeats many stronger inline skaters [3]. He’s generally not tolerant of scrapes and falls, but he shrugs them off when skating [4].

I don’t know of any other summer activity that has the rhythmic rise and fall of the swing. So for swinger-positive teens, and with recognition that anything out of the basement is risky, I recommend a look at inline skating. With, it should not need to be mentioned, wrist guards and a very good helmet that should be replaced every 3-5 years and with ANY head impact. [5]

[1] Non-adaptive, meaning not competitive in our current environment, an environment that requires a high degree of emotional control, cognitive flexibility, and social interaction. In this environment it’s not only “autistic” minds that are disadvantaged.

[2] I’m working on reinforcing the existing structure so it will withstand #2’s adult wait and swinging style.

[3] It’s a bit surprising how many club skaters, who can be very fast on smooth trails, do poorly on urban landscapes. 

[4] There’s a reason that inline skating is not as popular as it was when boomers were younger. It’s a contact sport. I’m a strong inline skater, and every few years I find a way to fall.

[5] I wear a helmet when bicycling, but I recognize there are valid arguments that for some people, in some conditions, the benefit of a bicycle helmet is less than I would have thought. With inline skating I am as certain as death and taxes that a helmet is beneficial and wrist guards are very helpful. With any non-trivial impact the helmet needs to be replaced — like air bags helmets are single use devices. They should also be discarded after 3-5 years even when pristine — they compressive material degrades with time and sunlight.

Changing landscape of adult special needs: Housing in the Twin Cities

As our eldest heads towards his last year of High School we’ve been focusing on the housing and employment landscapes. Focus is hard, because both housing and employment options are changing quickly.

I’ve been thinking through the bigger picture of what’s going on, which has something to do with demographic squeeze (aging boomers), slow economic growth (aka “secular stagnation”), the large role prisons play in American special needs housing [1], ethnicity and special needs services, Baumol’s Cost Disease, reaction to scandals like ’The Boys in the Bunkhouse’, the Minnesota Meto case, Staten Island’s horrific Willowbrook State School [2] and to the history of sheltered workshops for the blind. All summing to well intentioned but fuzzy thinking that recapitulates the idealistic failure of deinstitutionalization - including mixing cost reduction with reform.

Ok, I really do need to write that post — which is to include a survey of what’s happening in Europe and Canada. Someday - but not today. Today is an edited contribution from an anonymous contributor on the current state of special needs housing in Minnesota taken from a recent meeting in the Twin Cities (emphases mine). This complements notes from a similar Nov 2013 meeting.

[meeting was]… run by Sean Burke, a lawyer with MN Disability Law Center, who is on a housing law fellowship there (paid with money donated to the law center to fund his work in this area—3 cheers to someone)

 

…. Sean says state and counties are still establishing guidelines and rules for how the housing rules will work.  Next couple of years will be important in rule development.  Laws are changing, but could cause unintended problems, and lose some of the group home advantages--eg safety.  He believes can be good opportunities however, for better living without problems that did exist in poorly run group homes, which could resemble mini institutions.

 

Compares it to the IEP process, where it has taken 30 years for schools to come to terms with what the Disabilities Act requires them to do.  Says we need to approach this as we do IEP--with an idea of what we want to ask for.  If we wait for them to propose what they are willing to do, it will be smaller and less.

 

NB: I was thinking that I was really going to miss the yearly IEP process when the kids graduate from high school; but now happily we get to do it for the rest of our lives!

 

… 1980s—reaction to Willowbrook etc—Feds authorized money for HCBS (home and community based services): Federal tool/mandate to take institutional money and use it for community services (although these not defined).  Suspect Texas used this money to send young adults to work in Iowa turkey farm.  MN used this money in 1980s to establish 4 person group home model, run by private businesses.  This has lasted until last 5 years or so.  

 

State of MN said in 2009 no more group homes to be established [Pawlenty/GOP administration].  Seems like combination of Fed response to lawsuits, re institutionalization,  and MN response to expense of group homes.  This sudden change has everyone trying to figure out what can be done and what money there is for it.  

 

MN is developing an “Olmstead Plan” for this purpose— taking its name from the Supreme Court decision Olmstead vs Zimring in 1999, where the state of Georgia was told it needed to find community based services for cognitively disabled people who wanted them....

 

Also, as of this year “community setting” is now finally defined by feds—10 features. There is a particular focus on privacy and choice as defining a community setting. There is real concern that the well regarded Fraser apartment building with only disabled residents will not meet the “community setting” criteria.

 

Three parent and family scenarios were presented, all with cognitively disabled children in 20s.

 

D lives in duplex shared with his parents.  1/3 time staff care, paid for with CDCS waiver, rest of time including overnight is parent care.  They are not sure this will be final solution, but now feel that can take a few tries to find what works, don't need perfect plan at start.  Their CDCS waiver pays less than a DD waiver, but lets them have more flexibility about how they can use the money--most used for PCAs, some used for technology in his apt, some for a personal trainer, some for transportation, etc.  His home has a space for sensory things, a space for quiet things, a good chair..

 

They did not like the day programs they visited … so plan his days themselves with use of Highland Friendship club activities and personal trainer, trips with PCA etc.

 

They used the "Person Centered Planning" process to develop this plan, a formal process that the waiver can pay for (ARC can do this--called Lifetime Assistance Planning).  They found a team of people to be involved with D —trainer, neighbor who checks in, family friend to be maintenance guy.  These roles are specified in the plan.  They feel these people will remain involved if parents die.

 

… They had to negotiate all of the above arrangement with the state, who will do “assessments” of the needs of the people getting wavered services.  The state has to agree with the family housing plan.  The family found that the state risk assessment gave the the evidence they needed to get the monitoring technology in D’s home paid for by the waiver, however.

 

D gets SSI (about $750/mo) and “MN supplement mental aid shelter needy” or MSA Shelter Needy ($200/mo) plus food stamps $51/mo...

 

M lives at home.  He gets about $760/mo Soc Security disability, he does not work.

 

B lives in a home owned by his father with 2 other cognitively disabled young men…  did a lot of work with state and county to establish this house, an example of an IHO (independent housing option—a term used by the counties, basically means anything that is not a group home).  B has a DD waiver (started with a CDCS waiver, hard work to convert it to a DD waiver a few years ago).

 

B goes to center based DTH (day training and habilitation) at Merrick, where he gets vocational training, and B and housemates have staff in the home from a licensed service provider approved by the waiver board.  One of B’s housemates has a job at Davannis through Merrick.  Also get money from SSI and RSDI  (retirement and survivors disability insurance?), plus MSA shelter needy $200/mo, and $16 food stamps/mo.  Plus he earns about $200/mo.  

 

The IHO setup was complex. It required working with an existing group home, learning to structure an IHO, and writing an RFP

 

When talked to county about how much money available, was told “you won’t get as much money with an IHO as in a group home".  After extensive pressure found B was eligible for $155/day for a group home, they managed to get 80% of that for the IHO.

 

All say the evaluation process is in flux, and the parental fees are in flux.

 

Parents worry about loneliness in a parent shared duplex, about segregation in an IHO.  Also has been a problem that with live in staff, there can be confusion about whose house it is—the staff’s or the person with disabilities’, can use rotating staff for overnights to prevent this problem. Some parents wish for a cooperative housing example—like in the 60s—separate bedrooms with a common living area and shared meals, and mix of disabled and non disabled residents. That does not exist now. 

 

I asked Sean whether the state is trying to avoid what happened with mentally ill in the 70s—he thinks that state will pay what needed to get the community services, MN is just a good state that way.

 

Sean says that there are other HCBS services and money that can be used for housing if your child does not get a waiver. Also that in this time of change, keep talking to everyone you know. 

[1] And long term care of mentally ill too.

Developmental disabilities and sheltered workshops: "free" to starve?

This April 2014 announcement portrays the end of supported employment for the cognitively impaired as a victory similar to the ADA’s benefit for the physically disabled … (excerpts and emphases mine):

Rhode Island Settles Case on Jobs for the Disabled - NYTimes.com

The Justice Department on Tuesday announced a “landmark” agreement with the State of Rhode Island to free people with developmental disabilities from a decades-old system that kept them unjustly segregated in sheltered workshops and adult day programs, removed from the competitive workplace and the broader community.

The settlement, which addresses the civil rights of about 3,250 Rhode Island residents, also provides a road map to compliance for the 49 other states, federal officials said. They estimated that across the country, 450,000 people with intellectual and developmental disabilities while away their days in essentially cloistered environments…

… people with developmental disabilities and aspirations who spent years stuck in sheltered workshops that financially exploited them.

There was, for example, Steven Porcelli, 50, of North Providence. In a telephone interview before Tuesday’s announcement, he recalled graduating from high school, working briefly at a hardware store, and then being sent to a sheltered workshop run by a nonprofit company called Training Thru Placement.

For about $2 an hour, Mr. Porcelli assembled jewelry, packed medical supplies into boxes, grated cheese and stuffed peppers for an Italian food company. All along, he said, “I did want another job, because that’s what it was supposed to be: training through placement.”

“I was there for 30 years,” Mr. Porcelli added. “I was doing piecework most of the time, which I didn’t like too much.”

Jocelyn Samuels, the acting assistant attorney general for the Justice Department’s Civil Rights Division, cited Mr. Porcelli’s case, among others, in unveiling what she called the “landmark settlement” to address the “unnecessary segregation” of sheltered workshops and day facilities.

“We cannot wait another day to change,” Ms. Samuels said. “And we won’t.”

Under the agreement, Rhode Island — which federal officials praised for recognizing and embracing the need for reform — has 10 years to do the following to resolve violations of the Americans With Disabilities Act:

■ Help state residents with developmental disabilities obtain typical jobs in the community that pay at least the minimum wage and offer the maximum number of hours consistent with the employee’s abilities and preferences;

■ Provide support for nonwork activities in the mainstream, including community centers, libraries, and recreational and educational facilities;

■ Prepare high school-age students with developmental disabilities for competitive jobs in the community through internships and mentoring programs, among other efforts;

■ Redirect the “significant” public funds that are used to support segregated settings toward encouraging services in integrated settings.

… They determined that Rhode Island had “over relied” on segregated settings, to the exclusion of integrated alternatives. About 80 percent of the people with developmental disabilities who were receiving state services — about 2,700 people — were placed in segregated sheltered workshops and facility-based programs.

In addition, only about 5 percent of the young people with developmental disabilities leaving secondary schools from 2010 to 2012 went on to jobs in integrated settings — even though many were capable of working in the competitive workplace.

Federal and state officials said they had received a positive response from businesses to the reforms. They said that the U.S. Business Leadership Network, a network of Fortune 500 companies, and Walgreens would sponsor a business summit meeting in Rhode Island in June to explore ways to expand the training and employment of people with development disabilities.

Ms. Samuels explained that those employed in sheltered workshops would be exposed to other opportunities, but would be allowed to remain in the workshops if that is their preference. “We are not shutting them down,” she said.

Mr. Porcelli, though, has moved on to a new job, doing office work and some computer training at Automated Business Solutions, a small business in Warwick. He said he enjoyed being in competitive employment because, he said, “I feel more accomplished.”

What a pile of horse shit.

The money that was spent on sheltered workshops is to be redirected to “encouraging” services, and “exposing” opportunities - in a world where most low cognition jobs have vanished to automation and globalization - and they aren’t coming back.

Will the cognitively impaired get special positions in the long, long lines for minimum wage high stress Walmart jobs? How well will that be received? Will ADA style lawsuits mandate the restoration of mail rooms, human staffed factories, filing cabinets and gas station attendants?

Oh - and the workshops “won’t be shut down” after the funding is “redirected”? I have no words for that.

This is the second coming of emptying psychiatric institutions — and dumping schizophrenics to die on the streets.

Yes, we need more employment options and vastly better transition and lifelong learning programs — but closing sheltered workshops for the cognitively disabled is not the answer.

Deception and autism

Somewhere I picked up the idea that autistic children didn’t lie very often. Long ago I realized my two kids on the spectrum had no trouble telling lies — though they weren’t always very good at them.

Today I decided to check out the academic literature. This sounds right …

Exploring the Ability to Deceive in Children with Autism Spectrum Disorders - Springer (outrageously $$)

We found that children with autism spectrum disorder (ASD), like typically developing children, can and do tell antisocial lies (to conceal a transgression) and white lies (in politeness settings). However, children with ASD were less able than typically developing children to cover up their initial lie; that is, children with ASD had difficulty exercising semantic leakage control—the ability to maintain consistency between their initial lie and subsequent statements. Furthermore, unlike in typically developing children, lie-telling ability in children with ASD was not found to be related to their false belief understanding…

FWIW I’m a lousy liar too. Indeed I’m so bad at it that I very rarely consciously lie. Maybe autistic adults learn that they’re bad liars and adopt a similar policy. Which may explain where the original misconception came from.

Autistic exercise: options for the distracted teen

#1 and #2 are both on the spectrum. They have some things in common - rigidity, solipsism, love for family — but they’re pretty different people. This is particularly true when it comes to exercise, the balm for all things from mood to brain development to physical health.

#1 is a jock. Hockey, baseball, bicycling, mountain bicycling …. adaptive sports or mainstream sports — he likes motion and he’s pretty skilled. #2 is different, he likes screens, books and Lego. #2 is also dangerously distractible; while #1 is quite good on a road bike #2 terrifies me and passing drivers alike. Neither boy likes hot weather and bugs. The good news is that #2 generally willing to exercise with me, and I love to exercise.

So now I have to come up with an exercise program for #2 that’s safe, effective and enjoyable. I’ll start with a short list of activities that I think of as suited to screen-oriented teens with high functioning autism …

• Minnesota Special Hockey: Be great if we had more ice time, but this works well during the season.
• Running: If you know many runners you can tell quite a few are on the spectrum.  Indoor treadmill with a screen can work.
• Climbing (indoors): Outdoor climbing is dangerous for the distractible, but indoor is fairly safe. Great exercise and, again, appeals to many on the spectrum.
• Swimming: a bit boring, and teaching #2 to swim took great patience and some money, but safe and works all year round
• Inline skating: again, there are quite a few on the spectrum. A rhythmic swinging type of activity.
• Weight training: solitary, methodical, quiet, can listen to music or podcasts…
• Exercise bike/ elliptical / treadmill: Especially if paired with a screen. (You get unlimited screen as long as you stay above 5 miles an hour…)
• Trampoline: Risky, but bouncing is good
• Mountain biking: #2 on the road is scary, but he’s great on even reasonably technical trails
• Martial arts: We tried this years ago and it failed, but he’s older now. A possibility, though group interaction is challenging.
• XC Skiing: he is an excellent XC skier — but the season is sadly short. (This year was pretty good though.)

I think we can work with this. We live in Minnesota so we need a range of indoor and outdoor activities to cover the entire year.

Some other sources of ideas:

• How to motivate teens/adults with autism to exercise - Laura Shumaker
• Physical Fitness | Family Services/Health and Wellness | Autism Speaks Extensive set of links at end

Special needs adolescence: Yes, Virginia, there is porn on Facebook. How to torch an account.

Young males have been known to view pornography on the Internet. Having a cognitive disability does not necessarily change this behavior. Some kinds of disability, however, mean that discretion can be weak, and boundaries between "acceptable" porn and "unacceptable" porn may not be observed.

That's one reason to try to put some controls in place. Another is that Internet porn is often the equivalent of the sweet smelling sap of a Venus fly trap. It comes with malware, and it can be used to identify a vulnerable population for additional manipulation. A cognitively impaired young person makes a fine catch.

So we have controls -- lots of controls. Not that Apple makes it easy, rumor has Mac Parental Controls are abysmal by design (I so want to kick those engineers). Facebook on the other hand, can be more or less monitored through the User Activity Log. So we've been allowing monitored access, with no password access. In addition to our monitoring, Facebook promises... 

Facebook: "Facebook has a strict policy against the sharing of pornographic content ... "

Of course you'll notice they don't say they actually enforce that policy. Thanks to my diligent research assistant I can tell you that Facebook has a diverse and abundant quantity of porn. It appears that the average Facebook porn site lasts a few weeks before it's shut down, but there are always thousands of new sites to fill the gap. I assume the creators are using the Venus Fly Trap business model.

So much for Facebook. The trick then is how to manage the Facebook account - now known to the scum of the earth. In this case I used the User Activity interface to "unlike" the relevant pages (might be useless, but seemed a good cleanup step). Then I used Facebook's obscure Account Deletion page (https://www.facebook.com/help/delete_account‎) to torch the account.

Sometimes experiments fail. So we take a break and try something different...