John Elder Robison is and has been many things: author, autism advocate, educator, creator of special effects for rock concerts, parent, engineer for Milton Bradley, government advisor. He is also a thought-provoking and entertaining public speaker, as I learned at a recent presentation.
He spoke on the campus of University of California, Riverside, at the invitation of its SEARCH Center. (“[T]he mission of SEARCH is to provide support, education, advocacy, resources, community and hope to families who have loved ones on the autism spectrum.”)
I first became aware of Mr. Robison several years ago when an acquaintance who has a son with Asperger’s recommended reading Robison’s book Look Me in the Eye. In it, Robison describes his turbulent childhood, teen, and young adult years with undiagnosed Asperger’s.
One of Robison’s current pursuits is advocating for the autism community to unite, find their voice, and stand up against discrimination and negative media coverage. He began his talk at UCR by describing the parallels he sees between the harsh treatment people with autism face and the discrimination Jews, blacks, and the LGBT communities have faced. Society became more accepting of those groups once they organized and became vocal about not being lesser humans. People with autism must do the same.
Robison said that by the time people on the spectrum reach young adult years, they’ve repeatedly absorbed the message (through words, actions, or reactions) that they are failures. As a result, their motivation to engage in the world is very low. Thus we have a generation of people with ASD (autism spectrum disorder) “hanging out in the basement,” with their talents and gifts untapped. In Robison’s view, organizing a movement to increase society’s acceptance is the way to break this cycle.
He shared that some researchers believe that the brains of people with autism have more plasticity than is found in neurotypical brains. In the extreme, this plasticity may account for the abilities of savants, It also leads to the exceptional skill many people with autism develop in fields that interest them. However, researchers speculate that the flip side of this increased plasticity is emotional blindness.
At this point in the talk, Robison reminded the audience that his memoirs document how he was chronically oblivious to the emotions of everyone else. Then he asked us, why would someone like that invest his time to advocate for others, as he’s doing now?
He credits his increase in empathy to having received experimental TMS treatments beginning eight years ago – the topic of his newest book Switched On.
TMS, or transcranial magnetic stimulation, targets specific areas of the brain with magnetic pulses to increase function. It’s noninvasive and has few side effects. So far in the US, the FDA has approved its use in treating depression that has been unresponsive to medication. Robison was part of a clinical trial to see if TMS can alleviate the emotional blindness of people on the spectrum.
After his first session, he was disappointed that his ability to interpret emotions from facial expressions (as tested by the researchers) had not improved. However, other things did change. The first thing he noticed was the extreme clarity with which he heard and appreciated every element of familiar music recordings. The researchers told him this was a side effect.
With continued sessions, he experienced other effects related to emotions – not all of them having welcome outcomes:
- For the first time in his life, he became emotional about tragedies that befell people in other parts of the world.
- His wife’s depression, which had never bothered him before, affected him so much that they had to divorce.
- He can’t go to movies, because their emotional impact causes him to cry a lot.
- He realized that most neurotypical people, far from being the happy, fulfilled, caring people he’d imagined them to be, walk around burdened with sadness, fear, anger, and greed.
- He almost became suicidal. The clinical staff pointed out to Robison that unlike most people, he hadn’t had a lifetime to adjust to feeling emotions.
- He can now collaborate successfully with others. Before, his successes had only resulted from creating things on his own.
If you’d like to read more about the potential of treating autism symptoms with TMS, here’s a clear, cautious article written by Lindsay Oberman, a TMS researcher at Brown University. This report from NPR also emphasizes caution in interpreting the results of the few trials that have been conducted to date.
Overall, there’s widespread agreement that more studies are needed, to investigate concerns such as which parts of the brain to treat, how frequently, with what dose, and at what age. Those interested in participating in a study of TMS therapy for autism symptoms can check out the US National Institutes of Health Clinical Trials website.
TMS is also being studied in relieving disorders such as anxiety, addiction cravings, adult ADHD, obsessive-compulsive disorder, and schizophrenia. If studies on these or other disorders are of interest, you can change the search term on the Clinical Trials webpage to see if any are being conducted in your area.
Going back to Mr. Robison’s talk: he summarized by saying that TMS has the promise of an emerging technology. As with other types of therapy, it’s not for everyone, but it’s probably good for some.
And while we all welcome the expansion of the toolkit for treating problems associated with autism, Robison believes the most powerful way to improve the situation of people on the spectrum is through forming an active, vocal community.
Ah, spring! For students about to leave high school for good, it’s the end of an era. And especially if the teens have special needs, spring is the time when their parents lay awake at night wondering what the next era will look like.
While staring at the ceiling, parental thoughts may turn toward finding a program where young adults can learn life skills, job skills, or study skills; where they’ll receive therapy from a committed team of professionals; and/or where they’ll be surrounded by people who understand, guide, nudge, and support them.
The next thought may be “where can we find such a place?”
Indeed, these programs are pretty rare and hard to find. Today’s post will share some websites and resources that help families find post-secondary programs or facilities for young adults with mental illness. My research didn’t turn up “one site that rules them all,” so instead I’ll present a few links which, together, seem to cover many of the options available in the US.
1. One site to try is the Network of Post-Secondary Programs. Here you’ll find links to the websites of 24 programs, including Adaptive Learning Center, College Internship Program (CIP), and Life Development Institute, all of which have been mentioned in previous posts.
The Network seems to consist of whichever programs choose to belong; it doesn’t appear to be an entity that evaluates or recommends these programs.
On the website, you can search the programs by specialty. For a given program, you can read an overview, look at a table containing program and contact information, or send the program a message requesting more information. Another section of the Network website includes news releases from the various facilities.
If you click on the “View All Programs” option on the Home page, you are taken here. It features a map showing the location of the facilities in the US. However, I noticed that the map only contains 17 points, not 24. Furthermore, CIP has five locations, none of which are displayed! Some updating is clearly needed.
Furthermore, some programs that I know of apparently haven’t opted into the Network and aren’t represented here. So while this website is a great idea, user beware: it isn’t comprehensive.
2. A site previously mentioned on the Cinder Cone that can help you track down the best-fit program is from the National Association of Therapeutic Schools and Programs, or NATSAP. Similar to the Network of Post-Secondary Programs, membership in NATSAP is voluntary, but each program has to be licensed or accredited and must meet other membership criteria.
I found two options on the NATSAP website for finding programs. The Program Search allows you to search for facilities by state, type, gender served, age range, and descriptive keywords. If you prefer, check out the PDF of the NATSAP member directory. Here you’ll find a one-page description of more than 160 programs. In addition to transitional independent living programs, these include therapeutic boarding schools, residential treatment centers, wilderness or outdoor programs, and other types. The directory has lists of programs by state, by gender served, etc. It also has a list by state of individuals who are NATSAP members, which may be useful if one-on-one help is of interest. Finally, note that the website includes a “For Parents” page with lots of advice and resources.
3. The website of the Woodbury Report, first mentioned in this blog post, includes a sidebar that lists several different types of programs for teens and young adults. The categories include the usual suspects, but you’ll also be able to see programs that are Faith Based, Military Style, for Spectrum Disorders, and others that address particular concerns. Click on a category and an array of program logos will appear. Clicking on a logo will take you to the program’s website.
4. Psychology Today provides another previously blogged-about site for locating programs in the US and Canada. Once you type a location in the “Find a Treatment Center” feature, you can refine your search by outpatient/inpatient, insurance accepted (an awesome feature, if it’s accurate!), and type of program. The last filter is especially helpful, since the bulk of treatment centers in the system focus on substance abuse. Some categories of program types you can select on are “Residential Boarding School,” “Teens & Adolescent Residential,” “Transitional Independent Living Programs,” and “Young Adult Residential.”
5. Next up is a page titled “Transitional post-secondary programs” on the website of the Special School District of St. Louis County. It includes more than a dozen programs from all across the nation, and links to other transition-related information.
6. If you feel like turning to Uncle Sam for help in finding facilities for someone with mental illness, check out the Behavioral Health Treatment Services Locator from SAMHSA (the Substance Abuse and Mental Health Services Administration.) Follow the link to see a map of the continental US. In the Find Facility box in the upper right corner, you can type in a city or ZIP Code, then check the box for Mental Health (MH). Once you do, a large drop-down box will allow you to filter the results a lot more. Scroll all the way down in the box to check “Young adults” under the “Age Groups Accepted” category. You can also check “Residential treatment center (RTC) for adults” under the “Service Setting” category. The facilities will show up as yellow dots on the map. The database doesn’t appear to include the transitional post-secondary programs found on the other websites, but it does include clinics and other outpatient facilities.
7. Last but not least is a surprising source of help: Assisted Living Facilities.org. Their website has a lengthy page concerning younger adults who may need assisted living due to mental illness or other factors. There is a feature allowing you to search for facilities in your area by typing in your ZIP code. These appear on a map and in a list, with links to each website. I don’t see a way to filter the results for facilities that take young adults, but the website does offer “free expert help.” I’d try that.
I hope these links will be useful to some of the parents who are worrying in the middle of the night instead of sleeping. (I hope the post wasn’t so boring that it made you fall asleep! – although, anything that helps you catch up on zzzzzzz’s is useful, I suppose.)
Please leave a comment if you know of other good ways to find facilities for atypical young adults, or if you’ve used one of the websites mentioned above.
You don’t have to look hard to find negative opinions about the use of medication to treat ADHD and other mental disorders in kids and teens. Diagnoses are overdone; doctors overprescribe; Big Pharma oversells. Others decry “filling our young people with pills” on principle.
Many parents who’ve heard these viewpoints warily went ahead and had their child or teen take prescription medications to improve functioning and coping – only to find in some cases that the medicines weren’t effective, or the side effects were bad news.
For those who object to pharmaceuticals, or tried them and found them wanting, attention may turn to alternative therapies. I wrote about one such therapy, called EMDR, in this post from the past. Another post dealt with equine therapy. Now let’s look at neurofeedback.
To learn about neurofeedback from the experts, here’s a link that provides a nice summary, other useful information, and some videos to watch as a bonus! To get my non-expert take on it, keep reading.
Neurofeedback is also known as EEG biofeedback. It’s a technique for training the brain to self-regulate better. This is accomplished by monitoring brainwave activity, noticing problematic frequencies that relate to the disorders being treated, and rewarding the brain for changing its patterns to more appropriate ones.
The monitoring is done by applying electrodes to the scalp (no head-shaving or pain is involved.) The electrodes transmit brainwave data to a computer, which displays the information on the monitor. This allows the practitioner to see which brainwave patterns are out of whack, and by how much.
Now here’s the really cool part: the retraining takes the form of a video game. You play the game (like getting a dolphin to swim to the sea floor) just by modulating your brainwaves. No hands! Over time, your brain learns to reproduce the desired pattern that allowed you to achieve the game’s objective.
Who can benefit from neurofeedback therapy? It’s best known for treating individuals with ADHD, but other conditions can be treated as well. Here’s an excerpt from the EEGInfo webpage that was linked to above:
We are especially concerned with the more “intractable” brain-based problems of childhood whose needs are not currently being met. This includes, Seizures and sub-clinical seizure activity, Severely disruptive behavior disorders such as Conduct Disorder and Bipolar Disorder, Autistic spectrum and pervasive developmental delay, Cerebral palsy, Acquired brain injury, Birth trauma.
Many children have sleep problems that can be helped such as Bed wetting, Sleep walking, sleep talking, Teeth grinding, Nightmares, Night terrors.
We can also be helpful with many of the problems of adolescence including Drug abuse, Suicidal behavior, Anxiety and depression.
We can also help to maintain good brain function as people get older. The good news is that almost any brain, regardless of its level of function, can be trained to function better.
I got to know a little about this therapy on meeting the highly-recommended psychologist we took Nathan to a few years back. As it turned out, Dr M offers neurofeedback in addition to psychotherapy. When he described the video game part to us, I blurted out “Ooh! I want to try!” – even though I’m not a gamer in real life. But despite Nathan’s love of video games, he never consented to trying one of Dr M’s hands-free games.
Although I never got to give it a spin, Dr M said he himself had experienced neurofeedback. The results for him were like removing a layer of fuzziness from his senses – not that he thought he’d had fuzziness to begin with. His mental processes also became sharper.
Before going further with this topic, we need to acknowledge that there is controversy about neurofeedback’s effectiveness. This article on Psychology Today’s website notes the lack of properly controlled scientific studies. The author devotes most of the article to skepticism on the claims made for improving general brain function, but includes mention of ADHD treatment, saying the evidence is “promising but not conclusive.”
My own little Google search resulted mostly in supportive findings, usually with a caveat that more research is needed. A recent study in Boston indicates neurofeedback improved classroom behavior and attention. It is suggested that neurofeedback could allow for lower doses of ADHD medication, or supplant medication altogether in some cases.
Here’s an article on the PsychCentral website that presents a positive picture of using neurofeedback to treat ADHD in children. According to this author, some studies indicate that neurofeedback is as effective as Ritalin in controlling ADHD symptoms. If you click on the “View Comments/Leave a Comment” button, you’ll see varying opinions from professionals and from parents whose children have tried the therapy.
In this forum, you’ll see more discussions from families who have tried neurofeedback for ADHD. Some people rave about the results. However, it doesn’t seem to work equally well for every patient, either in terms of how much improvement is noted, or how long the improvements last. But you know, I think the same can be said for most (all?) therapies for brain disorders.
I found fewer discussions out there about using neurofeedback to help those with Aspergers. Here’s the concluding sentence from the abstract of one paper on this topic:
The positive outcomes of decreased symptoms of Asperger’s and ADHD (including a decrease in difficulties with attention, anxiety, aprosodias, and social functioning) plus improved academic and intellectual functioning, provide preliminary support for the use of neurofeedback as a helpful component of effective intervention in people with AS.
If you want to pursue the possibility of neurofeedback therapy, I’d guess that you have at least these two questions: Is there a trained neurofeedback practitioner near me? and, How much of a money-and-time investment will the therapy require?
You’ll be able to answer the first question by searching from here, or from the website of the Association for Applied Psychophysiology & Biofeedback (AAPB). You can also find a practitioner (or researcher or educator) from the website of the International Society for Neurofeedback & Research (ISNR).
As for time investment, it seems to take about 40 sessions to achieve lasting improvement – maybe more, sometimes less. The sessions should be scheduled for at least twice a week and typically last around 45 minutes. If/when the improvements taper off, more sessions may be warranted at a later date. Some providers offer the option of doing ongoing or follow-up sessions at home, which a clinician monitors remotely. It saves on cost, but I’ve read there are doubts about the effectiveness of at-home neurofeedback therapy.
Monetary costs to the patient can vary widely, mainly because insurance companies vary in whether they cover the treatment. I found the discussion on this page from a practitioner’s website to be very helpful. At the bottom, you’ll see suggested questions to ask your insurance company about their coverage. To get a practitioner’s point of view on insurance coverage, click here. Because this link discusses various billing codes and strategies to try, I’d refer to it if I were getting the runaround from my insurance company.
My takeaway from all of this is that neurofeedback has its skeptics, and there are no guarantees it would be effective for a given individual. But I would definitely give it consideration as a therapy to try, on its own or in combination with other therapies.
If you’ve had experience with neurofeedback, please leave a comment to let us know what was good, and what was not-so-good about it.
(NOTE: the image of the neurofeedback process at the top of the page is from neurofeedbackholiday.com)
Ready for a surprise? Here it is: students who have difficulty with school-related skills are frequently seen to have problems with “perceptual-motor integration,” which roughly means awareness of body position. The good news is that training to refine perceptual-motor processes can enhance a person’s ability to read, write, do math, pay attention, etc. This is true for teens and adults as well as children.
I first heard of this topic in a presentation given at the “Raising Functional Adults” symposium in 2013, as described here. Linda Howe is a Perceptual-Motor Consultant whose talk on “The Physical Side of Learning” was an eye-opener for me and many others in attendance. I’m indebted to Linda for providing additional information for this post.
Here’s a quote from her brochure:
Perceptual-motor integration relates to the manner by which the individual takes in sensory information, processes and interprets the information, and then responds automatically to it.
Many children have not developed refined perceptual-motor skills. Frequently, they display very inconsistent behaviors. They may have difficulty in reading, writing, spelling or math. They may have a short attention span and are easily frustrated. These children have been diagnosed as hyperactive, dyslexic, or having minimal brain dysfunction.
Perceptual-motor development happens in sequence as a child matures. For reasons such as premature or traumatic birth, illness, or trauma, among others, stages in development may be missed or disrupted. Not only does this cause difficulties in physical responses, but it also entails substandard development in comparable brain functions. Students impacted in this way struggle or are inconsistent when attempting higher-level tasks, such as copying information from the board.
The student often learns to compensate, but the energy required for compensations frequently drains his/her system. With so much extra energy required for the intake and processing of information, there may not be much energy left for output (= doing schoolwork.) The compensations may also mean it takes longer to complete tasks. Thus, we have a student who is exhausted, frustrated, lagging behind – and who may be told s/he “is not trying hard enough.”
To make these concepts really hit home, let’s look at some of the specific perceptual-motor skills and how deficits in those skills translate to difficulties in the learning process. I’ll give a condensed version of the information Linda presented, but hopefully it’ll get the point across.
The first perceptual motor skill to consider is kinesthetic awareness, which refers to knowing where a given body part is and what it is doing, without having to look at it.
“Well, duh!” you might say. “I know where my right elbow is.” But have you ever taken a class in yoga, or dance, or karate? Been given tips for swinging a bat, racquet, or golf club? Were you perfect in following the instructor’s directions on positioning your body?
Some of us have a strong kinesthetic awareness; some of us goof it up on a regular basis. And some people have a really tough time (apart from issues of flexibility and the like), possibly because there was a disruption in developing that awareness when they were growing up.
Here are a few of the many clues that a person may have deficits in kinesthetic awareness: s/he is constantly moving, may keep arms and hands against the body, may under-respond or over-respond to touch, and/or may be very cautious or very accident-prone.
Related to kinesthetic awareness is physical figure-ground development, in which the person can selectively tense one set of muscles, such as those needed to move one arm. Some kids who have difficulties doing this might tense many other muscles in addition to the ones needed for the movement; others may not produce enough muscle tension to make the appropriate movements.
Once physical figure-ground relationships have been developed, the brain moves on to visual and auditory figure-ground development, where the person can focus on selected stimuli in the environment. Without appropriate figure-ground development, everything is perceived equally – and that leads to being overwhelmed and distracted. You can understand why the inability to filter out the “background” sights and sounds in the classroom while the teacher is talking would lead to struggles in learning.
Among other traits, people with deficits in figure-ground development may have a short attention span; may be excitable; may miss obvious features; and may be daydreamers (as a way to shut out overwhelming external stimuli).
Physical figure-ground development for the following body parts has particular bearing on classroom performance and behavior:
- Problems with waist differentiation lead to problems with balance. Students with poor waist differentiation may have trouble sitting or standing quietly; may lean on someone or something; are often disruptive in class; and may have a short attention span.
- If a student has trouble with shoulder differentiation, s/he may have trouble writing, to the point of avoiding it. The student may write slowly, grip the pen or pencil too tightly and press down very hard, or tense the muscles in the face, jaw, or tongue while writing. (I wonder if shoulder differentiation is less of an issue as we increasingly use electronic devices? Then again, my old habit of pressing hard with a pencil seems to have turned into a habit of pushing the heel of my hand down too hard when using a mouse!)
Laterality involves awareness and coordination between the left and right sides of the body. It’s the ability to use one side of the body and not the other, to use both sides together, and to change smoothly and spontaneously from side to side. Disruptions in developing physical laterality can lead to problems with the brain being able to handle tasks where crossing the midline of the body is required.
How would this impact a student? Possibly, in confusion while trying to track lines of text from left to right; awkward positioning of paper and body so as to avoid crossing the midline when writing; poor organization skills; difficulty in aligning columns of numbers; and reversing letters, numbers, or words while reading or writing.
Visual-motor coordination relates to the ability of the eyes to direct the hands. Deficits with visual-motor integration lead to sloppy work and difficulty in copying. On worksheets, students may skip problems or even a whole row of problems.
One last skill to touch upon, although it doesn’t involve movement, is auditory development. Students with poorly-developed auditory skills often have difficulty processing oral instructions or reading aloud. They have a hard time knowing which sounds to ignore, and they get tired easily because they must concentrate very hard when listening. Other typical characteristics are hyperactivity, short attention spans, and daydreaming.
Here’s a quote from a document that Linda Howe provided:
It is most likely that a child or adult who struggles with learning has deficits in several of the above areas. As a person develops, they will learn to compensate for their difficulties to varying extents, possibly masking the degree of the deficit and the energy required for achievement. An evaluation and consultation is the first step in defining the need for relief and remediation, leading to less stress and more success in life.
Linda’s individualized program begins with an evaluation to determine which perceptual-motor functions are underdeveloped and how severe the deficits are. She then devises a remedial program with exercises that are to be practiced every day at home. After six weeks the client returns to be reevaluated, and the program is advanced. Such a program is not a quick fix, and requires commitment to follow through.
The letters Linda has received from families of past clients testify to the remarkable progress made after following her remedial program. We are talking honor students! Also, we’re talking about fewer behavioral problems and more confidence, coordination, sociability, and self-esteem.
For those of you who are interested and live in southern California, Linda’s contact information is included on the Resources page. There isn’t a professional organization for perceptual-motor consultants, so word-of-mouth or doing an internet search may be your best bets for finding a consultant in your area. Perceptual-motor specialists tend to be certified professionals in fields such as teaching, nursing, psychology, and occupational therapy who have gotten additional training.
We all need to be reminded that children, teens and adults with perceptual-motor deficits are often very bright, but their performance in school or at work is likely to be inconsistent and doesn’t reflect their level of intelligence. Any program that will help release their potential is sure to be a benefit to the individuals, their families, and society at large.
At the time Nathan was 17 and finishing high school, I didn’t know much about regional centers. Our main exposure had been through our younger son Alan, who as a baby was placed with us through the Fos-dopt program. A nurse from the regional center, who had visited Alan at his previous foster home, came to our house to check on Alan’s progress in reaching developmental milestones.
But years later with Nathan’s graduation approaching, as I talked with transition specialists, vocational training providers, or people who ran residential facilities for atypical adults, many of them said something like “well first, get Nathan into the regional center; that way he’ll be able to access our services.” From them I got the general idea that regional center staff find appropriate resources for their clients.
Also, around this time I had found the website for the Adaptive Learning Center in Concord CA, which I wrote about here. It serves a population that includes those with ADD and/or learning disabilities as well as autism spectrum, epilepsy, etc. And, the website indicated that being a regional center client was one way to fund the costs of the ALC program.
None of the professionals I spoke to indicated that it might be a long shot for Nathan to qualify for regional center. The advice I was getting could be summarized as: apply for SSI, and get him into regional center.
As I have chronicled here, we couldn’t effectively apply for SSI until Nathan turned 18. On the flip side, we would have to apply to regional center before he turned 18. Once he became “an adult”, it would have to be his decision to apply – and that was highly unlikely.
I picked up the phone and described Nathan’s challenges to someone in the Intake Coordinator’s office at the Inland Regional Center, which serves our area. She wearily explained he would have little chance of being found eligible without an official autism diagnosis.
At this point we wouldn’t be able to get appointments with an appropriate diagnostician in the few months before Nathan turned 18. That’s why we very much appreciated the testing subsequently conducted by the school district, as described here. The school psychologist had told us that a regional center would often accept the results of these assessments. As it turned out, Nathan was assessed as being “autistic-like”, with scores well exceeding the minimum threshold for that label.
Armed with these results, I spoke once again to the Intake Coordinator. She sighed and said she’d send us the intake packet.
The packet included three forms that we had to complete and return. Not too long after that, we received notice for an appointment for a “Social Assessment” the following week. The paperwork also indicated that a medical assessment and/or a psychological evaluation would be conducted later in the intake process. The ultimate decision about whether the applicant qualified for services would be discussed in a “Team Conference”, which would take place after all the assessments were completed.
We were asked to bring a copy of Nathan’s birth certificate, his Social Security card, and copies of any appropriate psychological, school, medical, or developmental records to the Social Assessment.
The assessment was conducted by a psychologist who spent about half an hour reviewing Nathan’s records and asking questions. Then she left the room to confer with her associates.
She returned several minutes later and told us that Nathan did not qualify for regional center services. The reason she gave was that Nathan’s problems seemed to be primarily psychiatric or psychological, not primarily due to autism. She gave me a few suggestions on where else to find services, made sure I had information about the appeal process, and showed us the door.
I was dejected: ALL THAT EFFORT we (and the school district personnel) went through! And I was stunned: I didn’t expect a final verdict until the Team Conference, which apparently was not going to happen (no psychological assessment?) And I was puzzled: why had all the professionals I’d talked with seem to assume Nathan could get in?
Now that I’ve learned more about regional centers, the outcome for Nathan makes sense – mostly. See what you think.
This link from the California Dept. of Developmental Services tells us that regional centers are nonprofit corporations that contract with the state to provide or coordinate services for people with developmental disabilities in the local community. Regional centers do not provide housing, but help individuals and their families with housing, employment, education, socialization, etc. The population served includes people with autism, cerebral palsy, epilepsy, intellectual disabilities (earlier known as “mental retardation”), and conditions that are similar to intellectual disability. The condition has to have started before the person turned 18 and must be expected to continue indefinitely.
Furthermore, the individual must show impairment in at least 3 of these areas: self-care, receptive and expressive language; learning; mobility; self-direction; capacity of independent living; and economic self-sufficiency.
This article from by the SCAN Foundation gives a helpful overview of how the regional center system evolved as a result of the Lanterman Developmental Disabilities Services Act of 1969. Prior to the passage of the Lanterman Act, services were only available to this population through institutionalization in one of the State’s overcrowded developmental centers (previously included in the term “state hospitals.”) We’ve probably all heard stories of the nightmarish conditions known to occur in those facilities.
At present, 21 regional centers serve the vast majority of developmental services consumers in California, with only 1% of that population being housed in state-run institutions. Each regional center client is assigned a Services Coordinator (what I would think of as a case worker) who identifies and pursues the services that would benefit the client.
Regional centers face budgetary challenges (of course), in large part because of the growing percentage of individuals diagnosed with autism. Since regional centers are individual nonprofit corporations, there can be (and are) differences in how they are run: nuances of who qualifies for services, the range of services provided, and how easy it is to get the services needed.
I’ve heard from a few sources that our particular regional center has a reputation of being one of the most difficult ones to get into, and is difficult to get services from once you are a client. I’ve concluded that the professionals who had suggested applying did not intend to mislead me, but were probably used to dealing with the less-strict regional centers in nearby counties.
I’ve also heard that even the “good” regional centers can be a challenge to deal with. For instance, I was told of another regional center taking about a year to respond to a situation the family considered to be an emergency.
An acquaintance whose son is a regional center client because of fragile X syndrome said that our regional center hardly ever takes new clients over the age of 2. She was therefore not surprised that Nathan had been turned down.
Should we have tried the appeal process? An applicant has 30 days after receiving documentation of the regional center’s decision to request a Fair Hearing, in which an Administrative Law Judge would listen to both sides of the issue and make a decision. I spoke to a Clients’ Rights Advocate at Disability Rights California about the likelihood of a successful appeal in Nathan’s case. The bottom line was that without a new independent assessment (preferably from a neuropsychologist) and expert testimony, it was doubtful the appeal would succeed. Another option would have been to reapply after having acquired the independent assessment – but Nathan would have been over 18 by then.
Here is how I now view the situation: in deciding that Nathan was ineligible for its services, our regional center was abiding by the letter of the Lanterman Act. He came closest to qualifying by being found “autistic-like”, but the Lanterman Act specifies “autism.” In the months and years after our regional center experience, Nathan has been officially diagnosed as being on the autism spectrum – most commonly as having Aspergers – but he is not “autistic” in the classic sense. That being said, he has other mental health challenges which, combined with being on the spectrum, lead to significant impairments. But because his impairments are not caused by any of the developmental disabilities specified in the Lanterman Act, he does not qualify for services from our regional center.
In the real world of limited funds and services, priority has to be given to our most severely developmentally-disabled population. It wouldn’t be right if someone more in need was denied regional center services, or provided with less-than-adequate services, because someone like Nathan was being served instead.
However, it seems there is a growing need for a new or revised system for providing services to a population whose impairments are not primarily the result of a developmental disability. Wouldn’t it be better if support services were provided based on level of impairment, regardless of what the individual has been diagnosed with, or whether s/he fits into any neat diagnostic categories at all?
In general, I don’t give horses much thought one way or the other. (And we can be reasonably sure they haven’t given me much thought either.) But doing the research for this post has led me to appreciate them a whole lot more. It turns out that these four-legged beasts have qualities that are therapeutic for people with a variety of physical and brain-based challenges.
A good summary of what is generally referred to as “equine therapy” is found here. In the types of therapy that can help atypical teens, by interacting with a horse, the patient learns about his/her own internal life, and how it affects other people. This can happen because horses are sensitive to moods and attitudes – it’s an attribute that comes from being a herd animal – and their reactions are honest. A therapist helps the patient understand why the horse is reacting a certain way, and what that says about the patient. Additionally, being outside next to a large animal instead of in an office often leads to more open and honest reflection during the therapy session.
There are several approaches to using horses therapeutically. If you start looking into it, here are some of the terms you might encounter (it seems there is overlap among them):
EAP – Equine-assisted psychotherapy, also known as EFP (Equine-facilitated psychotherapy): This popped up the most in my Google search. It involves a patient, a horse, a certified equine-assisted therapist, and a trained professional therapist. It does NOT necessarily involve learning how to ride horses. The patient may be given a task, such as leading a horse through an obstacle course. The challenges and successes in communicating with the horse to achieve the task are used as jumping-off points for the patient to reflect on himself/herself and interactions with other people.
EAL – Equine-assisted learning, also known as EFL (Equine-facilitated learning): Similar to EAP, but the focus is on goals such as learning about leadership, resilience, etc. Can be used in corporate skill-building sessions, for example.
EAT – Equine-assisted therapy: This seems to be an umbrella term, i.e. “the discipline of using horses in therapy.”
Hippotherapy – Horseback riding used to reach physical, occupational, and speech/language goals
Therapeutic riding – A form of physical therapy for those struggling with physical or biological disorders
Adaptive riding – Gaining horsemanship skills as a means of achieving physical, emotional, and cognitive goals
An overview of these methods, as well as links to professional organizations related to them, is found here at the website for HEAL (Human-Equine Alliances for Learning). EAGALA and PATH are two other professional associations relating to equine therapy.
To read about how equine therapy is used specifically to help people with ADHD, click here and here. It can also be therapeutic for people with Aspergers and others on the spectrum, as discussed here. (On a related note, if your jaw hasn’t dropped lately, check out the documentary titled The Horse Boy!)
Other conditions that are being treated with equine therapy include: behavioral issues, depression, anxiety, stress, substance abuse, eating disorders, grieving, low self-esteem, and Post Traumatic Stress Disorder.
If you need more convincing about the benefits of human/horse interactions, here is an excerpt from an article by Suzanne Kane on the Elements Behavioral Health website.
Documented research shows positive physical and psychological results from humans interacting with horses. These include, but are not limited to, decreased blood pressure and heart rate, lower levels of stress, reduced feelings of tension, anxiety, anger and hostility, as well as increased levels of beta-endorphins, and beneficial feelings of self-esteem, empowerment, patience and trust.
(Sounds good for just about anybody, right?)
For our atypical teens, these therapies may be available as part of residential treatment programs and therapeutic boarding schools, or may be available within the local community. Many times, equine therapy is one component of a multifaceted treatment program. A quick look at prices for individual sessions in the US showed the general range to be from $30 for a 30-minute session, to $300 for a 90-minute session. In many cases, the cost is subsidized by donations.
Will your health insurance cover equine therapy? That isn’t too common, according to this article. (To me, it seems that if equine therapy is effective enough to prevent more-costly hospitalizations or surgeries, insurance companies might want to reconsider.)
About that effectiveness thing: according to this article in Psych Central, there have only been a few structured studies to assess how well equine therapy works compared to other possible therapies. The results of those studies are mixed, but researchers agree that more studies are needed. However, the anecdotal evidence of improvements in lots and lots of patients is reassuring.
I don’t have any anecdotal evidence, since our family has not experienced equine therapy. However, Nathan did have weekly horseback riding lessons at a local ranch for most of his senior year. (The nearest therapeutic program was too far away for our carsickness-prone son.) Since it was the only activity Nathan had agreed to try in years, we made sure he had the opportunity.
His first instructor was a young man who had worked with autistic kids at another ranch, so Nathan’s aloof behavior didn’t phase him. Each lesson started with saddling the horse, and ended with removing the tack, followed by grooming. That left a little over half an hour of actual riding instruction.
It only took a couple of lessons for the instructor to tell me, “Nathan is a natural. If he wants to, I can take him very far.” Music to my ears! I pictured Nathan expertly riding in equestrian events, gaining self-esteem, making friends, finding a career path related to horses.
Ah, but the kicker was “If he wants to.” The weeks went by, and Nathan advanced a little, but was never eager to try the next skill. He didn’t particularly bond with any of the horses, and being around them didn’t affect his mood.
After a few months, his instructor left to work at another ranch, and the female instructors who replaced him didn’t seem to “get” Nathan as well.
Then came the times Nathan was relieved when lessons were cancelled. Then came the times it was hard to get him to go to a lesson. Then came the arguments.
His main objection was that he didn’t want to go to a lesson if he didn’t feel like going. “That’s the way lessons work” did not prove to be a persuasive counterargument. It was no fun for him, and it was another source of tension for us. And so we called a halt.
Possibly, making the longer drive so Nathan could have real equine therapy may have led to better results. I’ve learned about one facility called The Children’s Ranch in the greater Los Angeles area that is definitely too far away for us – but I wish it weren’t. If you follow the link, prepare to be impressed with the range of programs the Ranch offers beyond therapeutic riding, involving horses and other animals.
Nathan likes animals in general; are there other animal-assisted therapies he could try? My internet search showed these animals are sometimes involved in therapies: dogs (ok), dolphins (!), and elephants (!!!)
If you or a family member has tried equine therapy, please let us know about your experiences. (And if you’ve had elephant-assisted therapy, you automatically qualify for a guest blog post all to yourself!)
UPDATE 10/12/14: A few weeks ago I attended an informational session about a residential program called CIP (College Internship Program). One of the first things mentioned in the presentation was how excited the staff and students were with the results of equine-assisted psychotherapy, which they had started on a trial basis several months earlier. It started out with a few students, but now half of the enrollment at the site is participating in the therapy. “Phenomenal” was how the director described the impact. A staff member I spoke with later told me she personally doesn’t like horses, but she loves the effect the therapy has on her students – they are less agitated and more focused.
I exchanged emails with Alexia Kutzner, the EAGALA-certified therapist who works with the CIP students at Dream Catcher of Los Angeles. Here is an excerpt of what she shared with me:
“I have seen a lot of changes, mainly in self-esteem and sensory integration. We have had a few students with proximity issues that are now able to touch, brush and lead the horse without any problems. Over the course of 12-15 weeks, students also develop a relationship with one or two horses and become more aware of the mood and likes and dislikes of the horses which often corresponds to the individual student. Students have also developed much more overall awareness of themselves and gained greater insight. A lot of this work takes much longer in regular talk therapy.”