The contents of this post come to you courtesy of Mary Mazzoni, who has put together the tremendously helpful blog Life After IEPs. And yes, there is life after IEPs and special education, even as many of the institutional supports available during the K-12 years go away after the student finishes school.
Being prepared for the issues faced during transition to adult life can make a big difference for you and your kiddo. One way to prepare is by soaking up the tips and wisdom found in sources like Life After IEPs.
Recently Mary sent blog subscribers a letter with links to updated versions of the most popular posts on Life After IEPs. She agreed to let me share an excerpt of the letter with you. That’s what you’ll find below!
The attributes needed to be a successful adult are often lacking in our atypical teens and young adults. Not only are the traits lacking, but many times there’s no sign of them even being ready to sprout forth. This leads to deep-rooted anguish for the individual and much pacing and wringing of hands for those on the sidelines.
What exactly are the adult attributes and behaviors we are waiting for, and how do we encourage them to grow? Are some strategies for encouraging their growth more effective than others?
This was the subject of a presentation I attended in 2014 at the LDA International Conference in Anaheim. The presenters were Jen Phillips and Char Reed of OPTIONS Transitions to Independence in Carbondale, IL. OPTIONS is a residential transition program for youth with “complex learning disabilities” (having a combination of brain-based challenges).
Jen and Char identified ten attributes or behaviors that provide a foundation for adulthood. The attributes are presented below, along with bulleted lists of strategies and tools employed by the OPTIONS staff to foster each attribute. (Most of the strategies listed refer to what the young person learns to do, but some refer to what the supportive adult does).
The staff had also polled students who were successfully finishing the OPTIONS program about which strategies they felt had been most effective. Those strategies are in bold blue.
What’s your reaction to these attributes and strategies?
Follow through with expectations and/or responsibilities. This will benefit the student in every arena of adult life.
- Develop checklists
- Use an assignment book or electronic planner
- Break tasks into smaller segments
- Identify resources (materials or people) that can help
Act and speak with honesty and integrity. Among other benefits, having these skills reinforces taking ownership for one’s actions.
- Seize “teachable moments”
- Rehearse or role play
- Practice paraphrasing what was heard
- Get assistance with problem solving
- Use the communication model (“I feel ____ because I want or need ______”)
- Reinforce desired behaviors
Develop and demonstrate interpersonal communication skills. Students are guided to move beyond the communication patterns of childhood.
- Role play or rehearse
- Pause to consider outcomes of response before responding
- Use the communication model
- Organize thoughts in writing before speaking
- Paraphrase to reflect understanding and check perceptions
- Ask clarifying questions
- Maintain eye contact
- Be aware of nonverbal cues; be ready to gracefully disengage or change the subject
Develop and implement organizational strategies. Organizing materials and personal space decreases distress and chaos in everyday life.
- Set aside specific time for specific organizational tasks
- Use check-sheets or charts
- Use planner or electronic organizational tool
- Break a large task into smaller parts; establish due dates and stick to them
- Display pictures of desired outcomes (such as a neat desk)
- Develop systems or routines, and use them consistently
- Have a trusted person assist regularly in organizational tasks
Maintain good personal hygiene. Often, students don’t consider others’ perceptions of poor hygiene and what the consequences might be.
- Hold the young person accountable for this; reinforce successful efforts
- Be ready to break down tasks (such as how to shampoo) and teach them each step
- Use checklists as reminders
- Display pictures of desired outcomes as prompts and reinforcers
- Assist with pre-planning for hygiene
- Reinforce the importance of consistency
Develop and implement strategies to problem solve. Trying to solve problems is better than becoming overwhelmed by them and shutting down!
- Identify the problem clearly and concisely
- Rate the problem in terms of intensity and urgency
- Identify available resources that can help solve the problem
- Identify steps to take to solve the problem
- Identify desired outcome
- Evaluate the relative success of whatever actions were taken to solve the problem
- Identify what needs to be done differently next time; adjust behaviors
Demonstrate respectful behavior. This includes managing emotions and delaying gratification.
- Use the communication model
- Role play or rehearse
- Disengage from a situation, but set a time to re-engage
- Prompt the student
- Reinforce desired behaviors
Implement effective time management. Students eventually are able to meet time-related requirements on their own.
- Use planner or electronic organizational tool
- Break a large task into smaller parts; establish due dates and stick to them
- Use a watch or electronic devise with auditory and/or visual reminders
- Post a schedule or calendar
- Use check-sheets or charts
- Provide prompts, encouragement and reinforcement
- Develop a system or routine and implement consistently – [this wasn’t in the original list of strategies]
Demonstrate safe behaviors. This includes use of medication, personal health, community access, transportation, alcohol, drugs, and sexual activity.
- Demonstrate safe behavior repeatedly; rehearse and reinforce (don’t assume the student has internalized the message until s/he consistently demonstrates safe choices)
- Use check-sheets
- Provide prompts and encouragement
- Participate in training or education – [this wasn’t in the original list, but is related to the first bullet point]
Take ownership for the consequences of actions. Expect and accept the consequences for one’s actions.
- Match consequences with actions
- Use the communication model
- Assist student with the steps in solving a problem – [see above]
- Rehearse how the situation could be dealt with in the future; identify resources
(You can also see much of the same information by following this link to the Prezi presentation the presenters prepared.)
From these lists, it seems that checklists, role playing, and using the communication model were in general not seen by the students as effective teaching strategies. The students did seem to gain from using planners, breaking processes down into smaller pieces, and getting help or prompts from a trusted adult.
The handout from the presentation notes that in order to help the attributes grow, the adults in the student’s life need resolve, consistency, effective communication, and patience. It’s important that all of the adults are on the same page (I say: good luck with that! But at least it’s a goal to strive for). The young person’s successes must be recognized and confirmed.
Adult life skills may not automatically appear in atypical young people, but acquiring those skills is at least equally important to the focus we place on getting a job or a degree. Although fostering their growth is a tall order, without proper cultivation the traits may wither at the seedling stage. Once these skills develop, the individual’s transition to adulthood will be smoother – and that in turn increases the chance of success in job seeking, higher education, and life in general.
Benchmark Transitions is a residential therapeutic transitional living program for men and women ages 18-28. It’s located in Redlands CA, one of the pleasanter small cities in the Inland Empire east of Los Angeles. Founded by Jayne Longnecker-Harper, Benchmark is a family business that’s been in the business of transforming young adult lives since 1993. I recently had the chance to take a tour of their main facility.
Benchmark is a dual-diagnosis program offering two primary tracks: one for those with a history of substance abuse, and one for behavioral health challenges without drug or alcohol abuse. Because of the dual nature, Benchmark can individualize the curriculum to fit the client’s needs.
Typically, at any given time Benchmark Transitions has a total of 45-50 clients. Enrollment is open year-round. While the program length of stay is designed to be six months, Benchmark can offer individualized length of stay options. That said, the average stay is 10-12 months, with extended care options available.
Benchmark has recently added an Evening Intensive Outpatient Program. This is used as a step-down from rehab for those with sobriety issues. At some point Benchmark hopes to be able to offer behavioral health IOP options as well.
Now, you might see a program that offers dual tracks and think (as I did), “I’d rather have a program that specializes only in behavioral/neurological issues. Next!” But after my tour, which at my request focused on the Behavioral Health track, I realized that dual-track programs really can deliver exceptional services to all of their clients.
What’s impressive about Benchmark? The comprehensiveness of services offered; flexibility in some program elements; the professionalism, longevity, and warmth of the staff; how well thought out and integrated all elements of the program appear to be; and an emphasis on character development as well as independence. Chance encounters with staff and clients in the halls of the Education & Life Skills Outpatient Center contributed as much to my positive impressions as the planned stops of the tour.
A few notable guiding principles were brought up on my tour. For one, clients are encouraged to think about and commit to the beginning, middle and end stages of each process they’re in, whether it’s preparing a meal or getting an education. (We know many young adults have difficulty getting started, or sag in the middle, or have trouble wrapping up what they’ve begun.) Also, in therapy sessions, Benchmark clients are guided to recognize the triggers for their undesirable behaviors and to develop alternatives that will yield better outcomes the next time the trigger shows up.
Some of the therapies and approaches I’ve blogged about before are part of Benchmark’s program. For instance, skills promoted by the Amen Clinic for improving brain health are part of the curriculum. I was also pleased to learn that neurofeedback therapy is available as an option.
Clients may be admitted to the Behavioral Health track if they have the “usual suspects” diagnoses (ADHD, anxiety, depression, spectrum disorder, bipolar, learning differences) but also for reasons such as anger management, grief, lacking confidence, lacking motivation, poor judgment, or social isolation. Neuropsychological testing is offered as an option. All clients have weekly sessions with a psychologist and monthly sessions with a psychiatrist. There’s also a monthly family therapy session, conducted by phone for families who live at a distance. The frequency of all these sessions can be adjusted as needed.
Each client is assigned to a case manager and a therapist on staff. Clients meet individually with staff and in small and large groups to learn life skills and discuss social and psychological issues. Some of the small groups are gender-specific. Clients have a schedule to follow and are responsible for showing up on time to all meetings and appointments.
At the Education & Life Skills Outpatient Center, the kitchen where weekday meals are provided has three teaching kitchen bays. These enable lessons in meal planning, prep, and cleanup in a setting that resembles an apartment kitchen. On completing the culinary arts classes, clients should qualify to obtain a food handler’s card, allowing them the option to work in local restaurants.
During their time at Benchmark, clients are also taught the basics of plumbing (such as troubleshooting why a toilet won’t flush) and household wiring. Wouldn’t it be great if every 18-year-old learned these things?
Banking and finance, household budgeting, and job search techniques are among the other practical life skills taught. Clients can finish earning their high school diploma while at Benchmark or can enroll in community college classes or vocational training if desired. Staff will assist with tutoring, study skills, placement, and career testing. One staff member ensures all clients are placed in volunteer positions around town and arranges part-time jobs for those who aren’t taking high school or college classes.
Art is another component of the Benchmark program. Clients can try their hand at things like pottery, jewelry making, mosaics, woodblock printing, tie-dye shirts, and woodworking. All clients make a crest (like a family crest) that features symbols and words conveying where they see themselves on life’s journey. The pieces of artwork I saw in the studio were remarkably good!
Benchmark clients live in 2-bedroom apartments in a complex about a mile from the Education & Life Skills Outpatient Center. Transportation is provided, or other modes of getting around are available, depending on the level of independence attained.
Roommates cooperate in maintaining their apartment and in planning weekend meals. Clients enter less-restrictive phases of living arrangements as they progress. The first 30 days is known as Phase I, or “Courage.” Phase II is known as “Conscience.” These two phases have 24/7 staff support. In Phase III, or “Character,” clients have less staff support and more autonomy in applying the life skills they’ve learned. They even serve as mentors to other clients.
Now we get to the part where I say: the program is wonderful, but it costs a whole lot.
And that’s true. Benchmark’s fees are about $10,000 per month private pay, including housing, therapeutic programs, clinical services, room & board, activities and incidentals. Whoa. (or is that “Woe”?)
The good news for many families is that Benchmark Transitions accepts insurance: they will work with most private PPO insurance companies as an out-of-network provider. Before you go very far along the path to admissions, they can help you get an idea of how much your health insurer might cover. They meet Detox, Residential, Day Treatment (PHP), Intensive Outpatient (IOP) and Outpatient (OP) levels of care, providing for a full continuum of care throughout the program. Recognizing that cost is a big factor for whether families will move forward with a placement, Benchmark works closely with your insurance provider, doing all the utilization review and billing for you, all at no extra cost. Financing is also available.
Is it trustworthy?
If you are concerned about Benchmark’s licensing and credentials, fear not. Here’s a statement that Benchmark staff provided:
Benchmark Transitions is a licensed residential treatment center through the State of California Department of Health Care Services (DHCS) and also holds an outpatient certification for the Education & Life Skills Center. Benchmark holds a national private school accreditation through NPSAG and a Private School Affidavit through the State of California. Benchmark Transitions is a founding member of the National Association of Therapeutic Schools and Programs (NATSAP); as well as Young Adult Transition Association (YATA.) Benchmark is also a member of the California Consortium of Addiction Programs (CCAP).
As part of your information gathering you might look around the Internet for other people’s opinions of Benchmark. You’ll see some glowing reviews but also a few disgruntled ones, and even mention of a lawsuit a few years back. I was momentarily concerned – until I read that Strugglingteens.com listed Benchmark Transitions as one of the schools and programs with the best reputation among Independent Educational Consultants.
For even more reassurance, check out this discussion from the impartial educational consulting firm FamilyLight. They conclude that “…[Benchmark] deserves a reputation for being one of the most if not the most trusted facility in its class for excellence of service, innovation, and self-assessment.”
“Best reputation,” “trusted,” “excellence” – those words certainly affirm the favorable impression I developed about Benchmark Transitions.
Our atypical young people need a lot of support as they transition to adulthood. Many families try to provide that support, with or without help from agencies, as the young adult continues to live at home. To do it well requires a lot of time, effort, and confronting all kinds of challenges without losing hope or burning out.
Now picture young people with ADHD, Asperger’s, or other learning differences having a whole staff of experts to help them understand more about life and themselves. They live away from home, sharing a 2-bedroom apartment, among a community of peers going through the transition process with them. They have academic support as they take classes at college, or vocational support for getting started on a career.
All this – and more – is available through a program called CIP, or College Internship Program. It’s one of those residential programs I had a hard time finding at first, but later rejoiced when I discovered several in existence.
I recently attended what’s called a CIP Experience Day, where staff members give families and professionals an overview of the program, a tour of the facilities and apartments, and a chance to ask current students questions about their experiences. I came away thinking, “this is everything you could want in helping these young people launch into life,” and feeling optimistic about the future of the students we met.
One of CIP’s brochures says, “We graduate young men and women of confidence, character, and integrity capable of making contributions to society and claiming their place as citizens of the world.” Who wouldn’t want that? Isn’t that what we dream about?
Here’s some background: CIP was founded in 1984 by Dr. Michael McManmon. (By the way, it was only 12 years ago that Dr. McManmon realized he himself has Aspergers – making him part of the population his program is designed to help!) CIP has six locations in the US: Amherst NY, Berkshire MA, and Brevard FL in the East; Bloomington IN in the Midwest; and Berkeley and Long Beach CA in the West. According to the CIP website, the Massachusetts location has upwards of 50 students, while the enrollment at other sites is around 20-30. The programs are largely the same among all the sites, with some variations depending on the local community and particular strengths of staff members.
Students are between the ages of 18-26 and have a documented diagnosis of Asperger’s, High-Functioning Autism, PDD-NOS, ADHD, NLD, Dyslexia, or other Learning Differences. Other admissions criteria are the potential to live and attend a college or career program independently; reasonable emotional, behavioral, and psychological stability; and most of all, motivation to meet the program’s goals. A typical CIP student is in the program 2-3 years.
While young adults enrolled in the program are referred to as students, it’s important to note that CIP itself is not a school. However, the CIP facilities and nearby apartments are located within an easy commute (on foot or public transit) to local 2-year or 4-year colleges. For those attending college, CIP staff members assist the student with everything from enrolling to figuring out a class schedule to getting accommodations to communicating with the professor – as well as helping with study techniques and tutoring.
If college is not in the student’s plans (at least for the moment), CIP helps with career counseling, job preparation, and internship placement.
About those plans: CIP ensures that students set their own short-term and long-term goals in what are called Person-Centered Plans. With assistance from staff and feedback from peers, each student periodically assesses his or her progress towards achieving the goals. Creating the plans and monitoring progress is one aspect of CIP’s emphasis on developing executive functioning skills such as making plans, getting organized, completing tasks, and managing time.
With a typical staff to student ratio of 1:2, CIP provides comprehensive guidance in a variety of areas. For example, CIP Long Beach has one or more staff members in the following departments:
- Academics: help with study strategies, academic coaching, executive functioning, tutoring, and study hall.
- Advising: case management, communication bridge between parents and students, liaison with other programs providing support
- Career: training, counseling, community service, resume development, internships, job placement, on-the-job assistance
- Life Skills: support for apartment living, menu planning, food shopping, cooking, socializing, recreation
- Social Skills: group and individual practice, conflict resolution, support for interacting in the world at large
- Therapy: art therapy, equine assisted psychotherapy
- Wellness: fitness, health, nutrition, stress reduction
In addition to time spent in school or on the job, students gather weekly to meet with staff in each of these areas. One thing I liked about the CIP approach is that if a student in the group is not picking up well on a particular skill, the staff member and student will meet one-on-one at another time to work on developing the skill.
Here are some of the other positives I heard and saw during the CIP Experience Day:
- Every morning starts with a reframing class, in which students talk about their feelings, and strategies for getting to a better place. This practice helps combat the negative mindset that is common among people with learning differences. (“Think Positive” is a motto you often encounter around CIP.)
- Staff are on hand to guide the students in the big and small issues of apartment living.
- There are fun weekend activities and a weekly themed potluck dinner.
- All students do 20 hours of community service a year.
- Every year includes an optional cultural trip. Destinations in the past have included Greece, New York City, and Belize.
- The program provides students different levels of support depending on the individual’s need. Students enter CIP at the level of support that makes sense for them. Most students move to lower levels of support as they proceed through the program. (Parents will appreciate that costs decrease with lower levels.) Students receive transition counseling as they are getting ready to exit the program.
Are you wondering whether all of this really makes a difference to CIP students down the road? Well, statistics presented on the CIP website point to much more positive outcomes for its graduates as opposed to the general atypical population. (Follow this link, then click on “Outcomes & Statistics” in the sidebar.)
Students and families who want to give CIP a try might want to check out Summer@CIP. These two-week sessions expose the student to CIP curriculum, fun activities, a group of peers – and the chance to take a break from living at home! One summer program is open to high school students entering 10th, 11th, or 12th grade in the fall. A second program is for high school graduates up to the age of 26.
Now that you’ve seen what CIP has to offer, you may be excited about looking into enrollment. Oh, and by the way, how much does it cost?
Um — a lot.
The CIP website and literature do not shy away from this topic. (Follow this link, then click on “Tuition & Fees” in the sidebar.) The fact is, it requires a big chunk of change to provide these services. First, there is tuition, which for incoming students varies from around $45,000 to $76,000 depending on the level of services required. (Current students who have progressed to needing less support are charged around $20,000 to $30,000.) Tuition for college is an additional expense. If the student is in the career program instead of college, that costs around $7,000. Then there’s the cost of the housing (in Long Beach – one of the more expensive sites for housing – this is around $13,000 a year), a fee of a couple of thousand (give or take) for the mandatory orientation program, and a monthly allowance of $550 for food and personal spending money. The optional cultural trip would be another expense.
Resources are available to soften the financial blow at least a little. These resources include: the possibility of a medical deduction on taxes; reimbursement from your insurance company for CIP’s clinical services; tuition credit for having attended Summer@CIP; a sibling discount; early payment discounts; CIP Tuition Assistance; SSI, SSDI, Vocational Rehabilitation or school district funding; financial aid for college attendance; and loans.
Before proceeding with the application process – which is quite involved, and not to be entered lightly – it would make sense to get a lot of information from CIP about the costs and payment options, as well as investigating the particulars of the other resources mentioned above.
I hope this has given you some insight into the benefits, and costs, of CIP’s programs. I’ll probably research other schools and programs in the months ahead, and we can all learn about how they are the same or different. For now, much applause for the services offered by CIP, the dedication and expertise of their staff, and for the young adults in the program who are making the most of the opportunities CIP provides for a brighter future.
I’m very pleased to present this guest post from Jenn Cohen, an expert in helping students with ADHD and/or learning disabilities prepare for taking the college admissions tests. I met Jenn at the Learning Disabilities Assocation of America annual conference in February, where she made a presentation titled “Wired Life: Online Tutoring for LD/ADHD Students.”
Her post has lots of useful information for anyone going down this path! Follow the links at the end for more of Jenn’s insights and to explore using her services for your college-bound student.
College Admissions Test Accommodations: How to Apply
I often find that parents who know the ins and outs of their student’s IEP’s/504’s don’t know where to start when it comes to applying for accommodations for the SAT and ACT. Just because a student receives accommodations in school does NOT mean he or she will receive the same accommodations on these tests. Here are a few tips for getting started:
- Make an appointment with your child’s school counselor or designated test accommodations representative. In almost all cases, the school will submit the application, but it’s usually up to parents to get the ball rolling. While many schools will automatically request accommodations for the PSAT (which most schools offer to all students as a matter of course), don’t assume that because they initiated the application with the SAT/PSAT that they will do the same with the ACT.
- If your child has not had updated diagnostic testing within the last few years, you should strongly consider getting a new evaluation. Both test organizations like to see recent clinical reports (especially the ACT). If your child plans to seek accommodations in college, you will want to have new assessments anyway, so get an appointment!
- Start early! I can’t emphasize this enough. Ideally, you will submit an application for accommodations at least several months prior to your planned test date. Compiling documentation, such as clinicians’ reports, IEP/504 records and teacher letters, can be time consuming, and if you need updated psychoeducational testing, getting an appointment can take several months. Plan accordingly.
- Strategize about which accommodations to request. Most commonly, your child’s school will recommend asking for the same accommodations he/she receives in school. However, in some cases additional accommodations may be appropriate. Frequently requested accommodations include extended time (either 150% or 200% time), small group or individual testing and testing over multiple days. Dyslexic students may also ask for a reader and a large print test booklet. Dysgraphic students may request a computer to type essays. Other appropriate accommodations may also be considered. Remember that the accommodations you request must be supported by the documentation, and be judicious in what you ask for. Some, like extended time, may sound useful, but keep in mind that they can also turn an already long test into a marathon.
- If your student is denied on the first request, consider appealing. The ACT in particular can be very stingy with awarding accommodations, so don’t hesitate to appeal if you have solid documentation. However, it is very important that your student NOT take the exam until the appeals process is completed. If he/she takes the test without accommodation and scores in the average range, the test companies will likely deny the appeal.
The accommodations process can be a tricky one, so don’t hesitate to seek out advice from counselors or test prep professionals. You are your child’s best advocate, so don’t drop the ball when it comes to these important tests. Good luck!
Jenn Cohen is owner of Jenn Cohen Tutoring and President and Chief Word Nerd of Word-Nerd.com, an SAT vocabulary website. She specializes in tutoring LD/ADHD students for the SAT, PSAT and ACT. You can find her on Twitter @satprepforadhd.
I spent two days last week at the 51st Annual International Conference of the Learning Disabilities Association of America. It was held in warm, sunny Anaheim CA at the Disneyland Hotel, where one can see mouse ears in the patterns of the wallpaper and hear Disney tunes piped in to the restrooms.
More importantly, those of us in attendance saw and heard an amazing diversity of experts who shared their knowledge about the differently abled. Many of the presentations and vendors focused on the needs of young adults with learning disabilities – which means, there’s a lot of information for me to turn around and share with you in the months ahead.
We will start the sharing with a workbook that helps students and families plan out the transition to adulthood. It is produced by the Full Life Ahead Foundation of Birmingham, Alabama, in collaboration with the Southeast Regional Resource Center (SERRC).
Full Life Ahead was started by parents who have had their own climb up the cinder cone, so to speak (Alabama not being known for its volcanoes!) This nonprofit organization helps people with “disAbilities” (as they put it) live an independent and productive life. They do so by holding workshops/retreats/training conferences; by publishing the workbook, in English and Spanish; by providing connections and technical assistance; and by promoting the idea of having a H.O.P.E. team for an individual with challenges.
H.O.P.E. stands for “Helping Other People Envision.” A H.O.P.E. team consists of family, friends, and professionals who form an alliance to help the individual identify dreams and expectations for the future, and provide support to turn them into reality. The team gets together every so often in a relaxed setting in what are called GAP (group action planning) meetings to brainstorm and problem solve.
The H.O.P.E. team is explained in more detail on the Full Life Ahead website, and also as part of the workbook.
If you read this blog post about transition, you might remember my comment about getting a headache from the transition workbook we were given. Happily, I can report that the Full Life Ahead workbook is user-friendly for parents and students alike. It is a sturdy, wire bound book with tabbed sections (which in my opinion should be standard for all resource books and cookbooks!) The book includes timelines, inspirational quotes, checklists, templates (for a resume, e.g.), questions to ask yourself and others, true success stories, places to write notes, a glossary, and the most comprehensive list of resources relating to disabilities that I can remember seeing. All of the information is presented with a positive and straightforward tone.
Certain sections of the workbook are geared toward parents, while others are intended for the student to refer to or fill out. Topics include self-advocacy, IEPs, college, employment, housing, money, health, and transportation.
Families, school systems, organizations, agencies, and service providers throughout the US are using the workbook. Follow this link to the Full Life Ahead website to read the comments of satisfied customers.
I think the success of the workbook lies in having been created by parents (Judy Barclay and Jan Cobb) who know what is useful and what isn’t. As they say in one of the earlier pages of the workbook: “We’ve been there … We’re still there!!” Later on the same page, they state: “We’ve filled [the workbook] with information we wish we’d had when our students were much younger.”
If you are interested, the workbooks can be ordered from the Foundation for $20 each ($15 for the Spanish edition), plus shipping. At this writing there are a few copies of the English edition available from Amazon sellers, but they cost a lot more!
The latest (fourth) edition of the workbook is from 2006, but I understand an updated version is in progress.
In any event, here’s a tip of the hat (with or without mouse ears) to Full Life Ahead for their successful outreach to families and for their role in empowering people with disAbilities.
Suppose your teen has traits that suggest he or she might have Asperger’s or autism spectrum disorder (ASD). Most likely, this high schooler is having trouble socially, and despite being intelligent may be doing poorly in classes. Unless changes are made at school, there’s a risk of not graduating.
Also suppose that it’s difficult for you to obtain an official autism diagnosis – perhaps you live a great distance from a qualified psychiatrist, licensed psychologist or licensed social worker, or maybe these professionals have a waiting list. What can you do?
You may find help from your school district’s psychological services office. Our family learned that school psychologists have some autism-related assessments in their bag of tricks. The results of these assessments can lay the foundation for a school plan (IEP) better tailored to your teen, in which the Educational Disability is termed as “autistic-like”. As a bonus, you may be able to use the assessment results to obtain autism-related services in the community.
We found out about all this in the last semester of Nathan’s senior year. Our consultation with TASK in January had prompted us to call for an IEP meeting in February to explore more transition services. It was at the IEP meeting that we met Dr L, the school psychologist. (I don’t know why there hadn’t been a school psychologist at the first IEP meeting we’d had at this school the previous spring.)
In contrast to the psychologist at Nathan’s first high school, Dr L was very proactive and competent (if you read “The Case of the Disappearing 504 Plan“, you will understand our relief!) It turns out Dr L previously had been called in to talk with our son during a time of troubling behavior. Based on his observations and Nathan’s records, he was now suggesting to us that Nathan might be on the autism spectrum.
Over the years, a few people had suspected Nathan has Asperger’s, but then again, several mental health professionals who’d evaluated Nathan had NOT mentioned Asperger’s. In Dr L’s view it was clear Nathan was severely impacted by one or more mental conditions, but if it were decided that Asperger’s/autism was a primary factor, he possibly could qualify for Regional Center and other autism-related services.
When I called the Regional Center to get an idea of whether Nathan could ever meet the criteria for their services, the weary gatekeeper suggested I take Nathan to the Diagnostic Center in Los Angeles, where he would get a thorough diagnosis. Going there wasn’t my favorite idea, since it would involve commuting to LA with car-trip-averse Nathan for several days.
I ran this by Dr L, who instead suggested that my husband and I, along with Nathan’s teacher and the teacher’s aide, complete a few assessments. If the results pointed to autistic-like characteristics, he could then set up an evaluation known as ADOS, or Autism Diagnosis Observation Schedule. He informed us that ADOS criteria are not exactly the same as official DSM IV-TR autism criteria (now it would be DSM-5), but said that Regional Center diagnosticians would usually accept ADOS results in making their diagnoses.
This sounded like a reasonable plan that would be provided free of charge by the school district, and it did not involve sitting on the freeway for hours. We went for it.
Below is a list of the assessments the four of us “raters” completed. (This took place in 2009, so updated versions of these assessments may now exist.)
- Behavioral Assessment System for Children, 2nd edition (BASC 2). The assessment contains a long list of behaviors, and the raters indicate how frequently each has been observed in the student (from “never” to “almost always”). Some items in the list relate to adaptive behavior, including social skills, communication, and daily living activities. Others relate to social emotional behavior, such as aggression, depression, withdrawal, hyperactivity, and more. (None of these categories directly specify autism, but it so happens that they include behaviors often associated with autism.) The scores given indicate whether the particular behavior might be “clinically significant”, “at-risk”, “average”, or better than average. Of course, it is noteworthy if several raters give scores that indicate a clinically significant or at-risk problem. In Nathan’s case, that happened in 11 out of the 16 categories overall.
- Conners Comprehensive Behavioral Rating Scales (CBRS). The responses on this survey point to “Diagnoses to be considered by a qualified DSM-IV-TR Diagnostician”. (This would now be a DSM-5 diagnostician). Among the 12 diagnoses included for consideration were Autistic Disorder and Asperger’s Disorder (but Asperger’s is now not in the DSM-5; is it still in the CBRS, I wonder?). Nathan had three diagnoses that all four raters flagged for consideration, including Asperger’s Disorder.
- Gilliam Asperger’s Disorder Scale (GADS). The questions in this survey are grouped into four subscales (social interaction, restricted patterns of behavior, cognitive patterns, and pragmatic skills) and an Asperger’s Disorder Quotient. The results indicate whether the probability of Asperger’s is high, borderline, or low. Most of the raters found Nathan’s probability of Asperger’s high in the first three subscales, but results were scattered in the fourth subscale and for the Asperger’s Disorder Quotient.
- Gilliam Autism Rating Scale, 2nd Edition (GARS 2). This survey had three subscales (stereotyped behaviors, communication, and social interaction) and an Autism Index. The results indicate whether the probability of autism is very likely, possible, or unlikely. Results for Nathan were mixed in the very likely or possible ranges, except in the social interaction subscale, where the responses of all four raters indicated Nathan had behavior consistent with an individual who had been diagnosed with autism.
The results of these evaluations gave enough support to the possibility of an Asperger’s or autism diagnosis, so the ADOS evaluation was scheduled.
This involved gathering a total of five school psychologists for about an hour and a half at a different school in the district with a room to spare. Two psychologists administered activities to Nathan, and three observed the interactions and provided input to the assessment.
The nature of the ADOS questions/activities are a bit of a challenge for the layperson to find out, but here is a discussion of them on the Wrong Planet website. From what I can gather, there are hypothetical questions along the lines of how the subject would react to a person who said ________ or who was doing _________.
The categories for analysis in ADOS are: communication, reciprocal social interaction, and communication + social interaction. The number value of the individual’s scores in these three categories are compared to cut-off threshold points for either autism or autism spectrum. Nathan’s scores were two to three times higher than the cut-off for autism in all 3 categories.
Here’s what the Autism Speaks website has to say about ADOS:
The Autism Diagnostic Observation Schedule (ADOS) is the instrument considered to be the current gold standard for diagnosing ASD [autism spectrum disorder] and, along with information from parents, should be incorporated into a child’s evaluation. Although a diagnosis of ASD is not necessary to get intervention, in some states the differences in the services provided to children with and without a diagnosis of ASD can be huge. Once a child has had a diagnostic evaluation and is determined eligible for services, additional assessments may be completed to better understand the child’s strengths and needs in order to plan intervention goals and strategies.
In our situation, it took time for all of these evaluations to be scheduled and assessed. We were given the results in a Multidisciplinary Assessment Report at our final IEP meeting in early May, a month before graduation.
The IEP system only allows one primary Educational Disability to be designated for a student, but now we had two conditions to choose from: Emotional Disturbance (the one he’d been given two years prior) or Autistic-Like Behaviors.
If we had known about and done all of these assessments earlier in Nathan’s school career, we might have decided to use Autistic-Like Behaviors as his primary Educational Disability. I don’t know if that would have yielded a smoother, more productive high school experience – but I regret not having that option. Hopefully this blog post will prompt some of you in a similar position to inquire and act on these assessment possibilities as soon as you can.
While the results we obtained came too late to affect Nathan’s school career, I was hopeful they would open the door for autism-related services in the community. Did they? Stay tuned!
NOTE to any school psychologists reading this: please add comments, to update the information or correct any errors in what you see above – or to validate what is presented. Many thanks!