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University Students with Autism, Asperger's

Please see my newer entry on this subject:
http://theautisticme.blogspot.com/2011/05/autism-and-higher-education-rights.html
This post is now locked. Unfortunately, the post did not lead to the intended conversation on what parents and students might want a college to do for students with ASDs. I might try again in a few months. I need to write something that clearly explains what I am seeking to learn from students and parents.

As I prepare to relocate and start a new university position, I am also considering how I might advocate for current and future students. (Technically, the post is "official" in August -- but I don't foresee any complications.)

Professors are in a complicated position, because students are protected by the Family Educational Rights and Privacy Act (FERPA). When I have received notification that a student has special needs, the disability services of the school only indicated what the needs were -- not the underlying reason for accommodations. Student privacy is paramount. In planning to work with students, I have to consider FERPA and any other applicable regulations.

I am trying to determine what a small, private university can do to serve the autism community. The university is known for business, mathematics, technology, and health science programs. It is not a liberal arts college. Even the "English Studies" program is within the School of Communication and Information Sciences.

Share your ideas and I'll spend the summer trying to develop a plan I can pitch to administrators and faculty over the coming year. In the meantime, I will be getting as involved as I can in local advocacy once my wife and I move. The adventure begins soon.

I will have to rely on persuasion to convince disabled student services and the university to work with me on any plan to serve students with autism spectrum disorders. However, I'm sure these arguments can be made. I am looking to other universities for inspiration, as well. There are several with "residential" autism support programs. As I tell my students, always borrow a good idea -- just be sure to credit the source.

What would you want a university to do to create an inviting atmosphere? What could I do to build a program that would attract students and their families? Help me create something special for university students.

Comments

  1. Maybe the post needed a little time to warm up and get some responses.

    A few students I have known have been in small private universities and colleges very much like the one you'll be in this August.

    I have been reading a lot about the FIRE organisation, and there was a book called "First Year Programmes and Thought Reform".

    Free speech is of course a big and standing issue.

    There are probably several inspiring programmes which do the practical things.

    And the students have ideas about what professors like and which professors like them. Tap into those people. Peep in and see what they do.

    For me, 2010-2011 has been the year of the Inclusive College.

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  2. Learning Differences (LD) are often a part of "autisms". For my son, in the future, I can think of 2 things that would be helpful. Someone to type his term papers, I think he could probably come up with the words,i.e., the ideas, but to type it out...maybe. Thank GOD for spell-check, but I always loved the thought of him having to hire someone to be his secretary. There should be absolutely no downgrade for this.

    The other, a calculator IS an adaptive device. ALWAYS. If you can figure it out correctly on the calculator, you can perform the excercise.

    Those may already be a part of ADA for college students, I don't know. Suppose I'll find out.

    Access to psychological services, if needed. Being autistic is hard enough, without an ear, it might become too much, especially if kids are far from home.

    Faculty sponsored "clubs" for kids with special interests have probably always been a staple in years past. More hands-on, than social clubs, where the doing is the key.

    This probably isn't anything like what you want. I am only thinking of my own son going to college, and what I would love to see for him.

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  3. If you are advising at a 4 year university, the likelihood of you meeting an undergraduate that was diagnosed with Autistic Disorder (before the age of 3 which I believe is a requirement for the diagnosis) is slim to none. Sorry for the run on sentence.

    If you do, they won't be able to hide it so there won't be a FERPA issue. There are very few documented cases of people diagnosed in early childhood attending a 4 year university.

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  4. Anonymous:

    The official diagnoses depend on the age of the person, since the DSM-III, IV, and IV-TR were moving targets. The DSM-V, which no student will have been diagnosed according to at an early age, is only going to make accommodations and compliance more complicated for some institutions. I still believe DSM-V is too vague and going to "lump" a lot of disimilar people together.

    Because most U.S. colleges and universities do require a DSM-IV code, many students do have the 299.00 code for "Autistic Disorder" and the majority of students *might* be 299.80 (Asperger's Syndrome or PDD-NOS are 299.80). I have a 299.00 "Official Diagnosis" but I also had the Dx of Mental Retardation at birth. There are a surprising number of people born prior to 1980 with "retardation" in their files. Remember that "autism" was redefined in DSM-III, IV, and IV-TR, each time more broadly.

    And there is always a FERPA issue. As a student DS could not, for any reason, disclose the nature of a my palsy or dystrophies -- only that I needed to use a cane at times. The law states they could only communicate my needs, nothing more. Professors are also not allowed to ask the nature / origin of a limitation.

    Again, I've met more than a dozen adults with doctorates diagnosed as mentally retarded in the 1960s and 70s. Autism was not widely known, but the MR criteria would today have resulted in a 299.00, not a 299.80 diagnosis. Some of these people were institutionalized or in the most restrictive special education courses. It probably isn't more than a half a percent of the adults with autism.

    The university would, I assume, focus on Asperger's and PDD-NOS students. Most schools don't even know how to accomodate someone like myself. Trust me, those conversations have already begun. But, we will make it work.

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  5. @r.b.:

    I have the right, as a professor, to decline the use of calculators. That would inherently alter the "nature" of a course -- and courts have ruled that such changes can be legally challenged by other students.

    There is a fine line between accommodating a student and recognizing that he or she cannot meet the standards of "nature and intent" of a degree program. I have had to tell students with severe noise and stress reactions that legally we can refuse admission into the health sciences programs, for example. A nursing student sued a college and lost the case because the federal court ruled the desired accommodations altered the nature of the degree.

    I had to tell a student with severe and frequent meltdowns under pressure that she could not continue her veterinary studies, legally, because she couldn't complete any of the lab practicums. She would have a meltdown and not be able to perform the "surgery" on the animal in question. I had to explain to her, a live animal with a life-threatening condition cannot wait for your meltdown to end.

    Thankfully, that student was interested in equine forensics. That was an acceptable change for her and the university. I do not know her status, but this alteration of plans was best for her and the university. Everyone has strengths and weaknesses.

    Telling a student, "Sorry, but you can't major in X if you cannot do Y" is a difficult thing. However, *every student* has some limits.

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  6. I was one of those people with mental retardation in their early files with a later diagnosis of AS. But, I don't have AD. In the past 20 years, I think it would be more the exception than the rule for someone to get an axis 1 diagnosis of MR if they were also AD. Unless the MR is profound, its not often found before AD in typical practice settings.

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  7. Of course, what the "official" diagnosis is doesn't matter one iota to a parent, student, or the support personnel at a school. What matters is that we have whatever is legally required in the folders. The terms and diagnostic codes will change year to year, but the needs of students to receive reasonable accommodations do not.

    I've seen all sorts of documentation provided to universities. Legally, we have the right to insist on a recent (often within three years) diagnosis, but that's about it. Other than that, whatever a "qualified" medical or mental health professional writes is what we have to accept. Usually, their motivation is simple: get the student qualified for services under the ADA, at least, and any state regulations.

    A great many DS offices at universities do not have autism / Asperger's Syndrome experts, but they do the best they can with the information they have to educate and prepare faculty.

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  8. "Of course, what the "official" diagnosis is doesn't matter one iota to a parent, student, or the support personnel at a school."

    Um what? It should.

    This parent and former student certainly cares because the level of available services are often dependent on the official diagnosis.

    It matters a great deal too after school, for Medicaid purposes.

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  9. I should clarify -- the parents and student *want* a diagnosis. That's the first and primary hurdle. The specifics are seldom less pressing at the moment of post-secondary enrollment than they will be for other services that extend beyond campus.

    A university office of disability services is not generally linked to any external services. Most campuses offer minimal accommodations, as well. They do what they can.

    We generally do not accept the paperwork from a K12 system or evidence of past services received. Likewise, we never turn over the DS records to any other public or private agency. Therefore, what is essential for university accommodation is often not the same as requirements outside the university.

    What the school has as "evidence of a disability" is often inadequate for federal services, but more stringent than required by K-12 public schools. It can be confusing and frustrating for parents.

    Now, if the student needs services outside the campus setting, that individual will need the appropriate records for local, state, and federal services.

    Navigating the maze can be annoying. I had to get all new diagnostic results for the university here when we moved. And, of course, the results were different and not aligned with past diagnostic records.

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  10. "They do what they can."

    I disagree. I don't think most universities do what they can. Does your university have an affirmative action program around disabilities in general?

    "We generally do not accept the paperwork from a K12 system or evidence of past services received. "

    Well, then the University is definitely not doing what they can by forcing students to spend a great deal of money to obtain an additional diagnosis. The Selective Service and the Social Security Commission accept primary education paperwork.

    "What the school has as "evidence of a disability" is often inadequate for federal services"

    That doesn't make much sense to me, but I'm guessing you have some anectdotal evidence in which you are basing that opinion. School systems today will typically have a licensed psychologist giving a diagnosis. This is recognized by the federal programs. IDEA funding is a federal program.

    I think the problem is University related. At my alma mater, the University of North Carolina Chapel Hill and Duke University, one public and one private, both accept school records and special education records as proof of diagnosis for disability services.

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  11. During my doctorate research, I interviewed 52 diagnosed adults with at least some post-secondary attendance. They were in various states and cities. Only one or two felt the university did well, overall, but most felt the disability services tried what was possible within the limitations of the institutions.

    I've worked with school sites and district administrators in California, Texas, Florida, Minnesota, and I am now moving to the East Coast to teach and conduct research. I will likely do some work in PA, W.Va, Ohio, and elsewhere in coming years -- but only as time permits.

    I cannot deny the divide between what DS specialists seek to do and what administrations and elected officials will fund.

    The institutions I attended ranged from okay to lousy. The R1 where I completed the Ph.D ended up cutting the one autism / ADHD expert. She is now employed part-time at a private Catholic university. I never doubted her desire to help students, despite the barriers she faced.

    From the Office of Special Education Programs: "School psychologists’ training does include study in education and special education, but compared to clinical psychology, there will likely be less emphasis on psychopathology and long-term therapy. Most states will only license private practice at the doctoral level, while most states credential school psychologists at the specialist level (60 graduate semester credit master’s degree)."

    That is why universities do not accept all school evaluations. We accept some. Also, some states do require a school psychologists to have the degree in psychology. (Some people mistakenly assume a "school psychologist is a psychologist legally qualified the same as one in private practice. That's not the case in the majority of states.)

    IDEA is not *funded* federally -- it is a law with regulatory mandates administered and monitored federally. States fund most, but not all, IDEA programs. School districts use a mix of federal, state, and local funds to comply with IDEA and other regulations.

    It is good you found exceptions. Dr. Lars Perner (Professor at USC), wrote an article on college policies and found one that included the following disclaimer: "We might not be the best setting for students on the autism spectrum." (I believe it was a California university.) Hopefully, they have since changed the website and handbook. There's no question there was an implied bias.

    See my newer post on these matters. The research is current, from 2009 and 2010.

    I'm leaving autism research with my new appointment, but will remain an advocate for the students. It was time to follow a path with less conflict than autism research.

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  12. "IDEA is not *funded* federally -- it is a law with regulatory mandates administered and monitored federally."

    http://www2.ed.gov/about/overview/budget/statetables/12stbyprogram.pdf

    I'm glad you are there to advocate. Make sure you are armed with the facts.

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  13. As you will read in my post -- "IDEA is not *funded* federally -- it is a law with regulatory mandates administered and monitored federally. States fund most, but not all, IDEA programs. School districts use a mix of federal, state, and local funds to comply with IDEA and other regulations."

    Yes, there are IDEA grants. No, they are not the bulk of IDEA-compliance related spending.

    I do know this stuff. I have worked on the budget and grant proposals. The IDEA ranges from 15% to 80% of a state's portion of IDEA funding, but districts also use local funds to meet the mandates. IDEA funding is in grant form, supplemental to state budgets. For some subparts, grants are the major source of funding, for others there is limited federal monies.

    From OSEP
    http://www2.ed.gov/fund/grant/apply/osep/index.html

    IDEA Formula Grants

    OSEP, through Part B of the Individuals with Disabilities Education Act (IDEA), provides formula grants to states to assist them in providing a free appropriate public education in the least restrictive environment for children with disabilities ages 3 through 21 (Part B, Sections 611 and 619). Also, OSEP, through the IDEA Part C formula grant program, assists States in providing early intervention services for infants and toddlers birth through age two and their families.

    Funds included in the State tables are for programs that allocate funds to States using statutory formulas. The totals do not reflect all Department of Education funds that a State receives. States and other entities may also receive Department funds awarded on a competitive basis. These tables also include, for each State, financial support from selected student aid programs that provide funds to the postsecondary institutions that students attend. Also shown for each State is the dollar amount of new federally supported loans made to students attending postsecondary institutions located in the State.

    --

    The State of Kentucky has a great page showing their applications for IDEA grants, to supplement state and local spending:

    http://www.education.ky.gov/KDE/Instructional+Resources/Exceptional+Children/IDEA-B+State+Application.htm

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  14. If you want to be completely literal, IDEA establishes the funding mechanism, but each year the grant amounts are adjusted by Congress and they have never -- at least not as long as I've received OSEP reports -- fully funded the compliance costs.

    Yes, I'm going back into administration. I'm sure I'll see plenty of budgets starting this fall.

    Underfunding is a standard process for the U.S. Congress. That's why the mandates end up picked up by states and local schools.

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  15. "The IDEA ranges from 15% to 80% of a state's portion of IDEA funding"

    That is a bit different than:"IDEA is not *funded* federally"

    In 2009, IDEA was funded to $20 billion plus, the highest its ever been. Now its back down to near $10 billion, near the norm. Still, as you say, its never been fully funded.

    There is nothing wrong with mandates, what is wrong is that people don't care enough to fund them.

    I guess you have disabled anon comments?

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  16. You quoted out of context. The full paragraph explained the funding is from a mixture of sources. More importantly, the IDEA funds are awarded as competitive *grants* not even block grants. This means a state could, in theory, not apply for any of the grants. However, the state would still be obligated to meet most IDEA requirements (but not all, as there are several sections that apply only to states accepting the grants).

    So, since a state can technically receive ZERO funds under IDEA Part B, it is *not* funded -- refusing funds does not release a school from Part B compliance, while a school can opt out of Part C or D (I forget which, the law is too complex to recall from memory).

    Grants are not the best way to administer education funds. States and school districts that struggle meet the complex grant requirements often need the money most. As a result, we see financially strapped schools the least able to provide services. Then, they lose more money because they cannot meet requirements. It becomes a "death spiral" of cuts, leading to failure, leading to more cuts.

    In California, the top schools employ teams of grant writers and I know several companies that prepare grants for LAUSD. The grants are big business -- so what do schools without resources do to compete for these funds?

    Examples can be found nationwide. In the Minneapolis area, the schools with the highest turnover due to migration lose federal funds because the turnover affects test scores. Then, we lose more funds because we cannot fund grant writers or outside grant experts. Meanwhile, the suburbs hire teams of grant writers with extra money from the state "merit grants" for high test scores. The new grants = yet more money.

    That's how schools work in the U.S. I'm not saying it is great, I'm stating how it is in the districts I personally know a little about nationally.

    And yes, I closed anon comments across my blogs for other reasons. Best to just have the same settings for all of them.

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  17. "Grants are not the best way to administer education funds. States and school districts that struggle meet the complex grant requirements often need the money most. As a result, we see financially strapped schools the least able to provide services. Then, they lose more money because they cannot meet requirements. It becomes a "death spiral" of cuts, leading to failure, leading to more cuts. "

    There is a good reason they are grants. Do you know what that reason is? I'm testing your knowledge here.

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  18. I am not responding further. I wrote a long response, detailing the history of educational grants and legislative statements, but that's not constructive.

    I am working on a grant proposal and a response to an RFP this week for a university education program. This is my career, not a theoretical debate.

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  19. The federal IDEA funding is grant basis to prevent local districts and state government's from diverting the funding to general education.

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  20. You just don't seem to get it. No one else is reading the thread and it lost any and all connection to the original blog post, which was a solicitation for ideas for college programs.

    As I said, I'm tired of the thread. You didn't seem to understand: I do this for a living. I have conducted audits of funding. I am in administration again staring this fall.

    There is a long list of reasons grants are used according to the various legislation, from segregation of funds (categorical funding) to measurable metrics via the application and renewal processes.

    Grants are like California's lottery. Schools weren't supposed to cut anything the lottery funded -- but we did. Lottery funds are categorical funds, which means you can't reassign them. You don't, but you move the general funds. Every district knows the games. Every administrator has to know how you move categorized funds within the limits of the law, while still doing what the school board wants.

    I'll be more blunt -- this thread is exhausted. End of thread. It didn't even come close to what I wanted from the blog post.

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