“You’ve seen one Asperger’s student, and . . . . you’ve seen one Asperger’s student.” (Jane McClure at December 2, 2006, presentation on “Post-Secondary Options for Students with Autism Spectrum Disorders.”)
My husband and I recently attended presentations by Jane McClure, an educational consultant, and Dr. Michael McManmon, the Executive Director of College Internship Program (CIP).
Ms. McClure’s comment resonated with both my husband and with me – it is one reason why each NLD or Asperger’s student and his / her family will have to figure out what is right for them.
So, I am going to put my thoughts about CIP in the context of what I think, at present, might be right for our son.
Need for structure and clear expectations. We have seen it both ways -- a highly individualized school experience for 1st through 8th grade and a far more structured experience for high school. At this point in our son’s life, we think he benefits from structure and clear expectations (and, as noted below, our son seems to agree with that assessment). My husband and I do not pretend to have all the answers about what structure will work best for our son. We do know, however, that without structure and expectations, he tends to create a world that works best for him – one that does not require him to move outside his comfort zone.
With structure and expectations, over a 2-1/2 year period, we have seen him move from resistance, to acceptance to mastery – of math, getting to and from school by himself, going to bed and getting up independently, taking responsibility for medications and getting homework done without reminders or nagging.
From 1st through 8th grade, our son was at a very “child-centered” flexible school – one that truly celebrated each individual student. He graduated from that school far more intact than many NLD students who survive middle school – he actually had friends, went on overnight field trips and had important roles in school plays. However, he really never mastered tasks unless they were ones he enjoyed – math, reports, and writing projects all fell by the wayside. The challenge for high school was clear – help him become a more independent learner.
After much testing, an educational consultant recommended a high school that focuses on NLD and Asperger’s students. This school is also very nurturing, but, unlike the small school our son attended for 1st through 8th grade, his high school imposes a rigid structure and clear expectations. During the almost 2-1/2 years that he has been a student at this high school, his discipline as a student and his ability to take responsibility for his own academic success, have increased significantly. As noted above, he also has accepted greater responsibility for some aspects of independent living – but the emphasis at the high school is on academics and self-awareness – living skills are the family’s responsibility. It has been easier or for us to instill some “discipline” since he is learning discipline and structure at school – at least the approach has been consistent.
Sitting through the CIP presentation made me think that our son may make the most progress in gaining independent living skills if he is in a setting with structure, clear expectations and support. In other words, support alone (someone who checks in on him and meets to “mentor” him) is probably not going to give him the sort of jump start he needs. At the same time, conforming to someone else’s structure and expectations is exhausting for our son, as it is for most of us. So, that probably argues in favor of a program that emphasizes living skills first and academics second, at least for awhile.
Cutting the steel umbilical cord: Dr. McManmon identified what he referred to as the “steel umibilical cord” between Asperger’s students and their parents – their parents have served as social coordinator, academic counselor, college counselor, therapy coordinator, medications coordinator – and it is time to let go. That is hard for most parents and for most students. However, in McManmon’s opinion, there is a direct correlation between letting go and student success. The students need to learn their own self-advocacy skills, and they can’t do that if their parents are hovering. Assuming that Dr. McManmon is correct – then the only way I could get comfortable “letting go” would be if my son was part of a program that understood, and paid daily attention to, all relevant aspects of his life – food, study, social, health, emotions, technology, hygiene, medications, etc. CLE claims to do this, and this is something that I would really focus on this during a visit.
What my son thinks: I shared my thoughts that perhaps we should be focusing on a college experience that meets these criteria: 1) provides “structure and expectations” around living, social and academic skills; and 2) provides sufficient support to have all of us feel comfortable about “cutting the steel umbilical cord.” He agree with #1. He wants to think more about #2 – I told him that’s okay – he has at least 18 months and many college transition program visits to help with that thinking.
So, how does CIP fit in?
I think CIP is worth investigating further for our son – and we will likely visit the Bloomington site. Although they plan to open a Northern California site in summer 2007, visiting Bloomington will enable us to see a “start up” center (they opened in August 2006) and also may help spur my son’s thinking (and his parents) about a location some greater distance from home.
CIP Structure and Expectations:
CIP began its “intensive” Asperger’s / NLD programs 3 years ago. It is too early to know if the CIP approach really “works” but the curriculum seems to be well thought out. Dr. McManmon reported that the Advisory Board meets twice a year to review the curriculum, and the members currently are working on a book about the post-secondary experience (with one chapter to be provided by each Board member). The Advisory Board members are listed on the web site -- it includes a number of leaders in the field. I don’t necessarily agree with each element of the curriculum, but I can see the benefit of requiring each student in the program to go through the same set of classes. It goes back to the “structure and expectations” issue – Our son would know right away if some students could “get out of” certain classes.
Today CIP offers 3 levels of programs; they are discussing adding a 4th. All CIP Asperger’s / NLD students begin with the highest level of support: the “ASPIRE” program. This program (which is described in quite a bit of detail on the website) includes a curriculum focused on what I would call “living an independent and fulfilling life as an adult with Asperger’s / NLD.” It is "intensive" and expensive -- $60,000 / year, exclusive of rent and college tuition. The focus is on self-awareness and self-advocacy. Students might also take one or two college courses. It sounded like the duration of the ASPIRE program varies from student to student, depending upon their needs – It could be one semester or even three. Once a student “graduates” from this program he / she moves onto a program that focuses on either college or vocational schools combined with clinical and residential support (at present, annual tuition for these programs is $49,000 and $39,000). The 4th level they are talking about adding would be far less expensive than the so-called “intensive level” – more in the nature of individualized coaching following the A.H.E.A.D.D. model.
CIP Cutting the Umbilical Cord:
For me – it comes down to whether they are actually doing what their curriculum calls for them to do. I have certainly been part of organizations with elegant plans and spotty execution. There is no room for spotty execution if the parents and student have cut the steel umbilical cord. I did like the fact that the focus in the Bloomington center is 100% Asperger’s / NLD, and they only took 10 students the first year. By contrast, CLE takes students with a wide range of learning differences, and added more students to their Denver site this year – their first year of operation in Denver.
CIP is considering Silicon Valley for their California location – the “San Jose / Cupertino corridor.” That is pretty close to home for us, which could be ideal, but which also might make it harder to “cut the steel umbilical cord.” I also wonder whether a small college town, such as Bloomington, might be a better intermediate step for achieving independence than would be the Silicon Valley metropolis – many cities loosely joined by sometimes spotty public transportation. On the positive side, as has been quite widely reported in a number of publications, there is a high incidence of Asperger’s in Silicon Valley, including in a number of Silicon Valley companies. My guess is that many executives in Silicon Valley have experience with Aspergers and NLD and would support the internship program – It could be a powerful combination. Several parents at the meeting expressed concern about inadequate public transportation in Silicon Valley. I assume CIP is aware of the importance of making sure the students can get back and forth to school – and there are buses, CalTrain, and light rail. The location and ability of each student to navigate Silicon Valley, in general, will be a factor that we each will need to consider for our own kids.
Conclusion: We definitely will add the CIP Bloomington center to our list of places to visit. The CIP presentation also gave me some new perspectives on ways to frame the question about what sort of programs will be most likely to help our son achieve the goal of an independent and fulfilling life – college is a means; not an end. The journey continues.
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