Learn Your Special Education Laws, Special Education Rights, and Share IEP Goal Ideas

Dec 09
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by Jess

Years ago I made a job change.  I moved from being an individual and family therapist in an urban community mental health center to working in a high school for children with Asperger’s Syndrome.  One dramatic change from community mental health to private school is that I rarely have to ask (or beg) parents to come see me.  In fact, nearly every day there is at least one parent who “pops in” to see if I am available to chat.  What is even more interesting is that many of these parents that I see on a daily basis are dads.  My community mental health colleagues know that dads are usually the last family member they will see in the therapy office.  Even more interesting than how many dads I see is the number of these dads who are older dads.  Gray hair, available in the middle of the day, work from home if they like, and retired dads.

A recent article in the New York Times (see “Father’s Age is Linked…” in NYT, Aug 22, 2012) got me thinking again about these older dads.  Their availability to meet with me during the day, attend parent/teacher conferences, or even pick their children up from school makes a huge difference in the lives of their children and the quality of care I can provide.  The question, however, kept coming back to me: Why so many older dads?

The NYT article mentioned above referenced research that suggested that the older a man becomes, the more mutations occur in his sperm, and these mutations might increase the chance of a child being born on the Spectrum. This theory (i.e., older dads may produce more children on the Spectrum) both explains my observations and lets me off the hook, in a public health sense, as I am not about to tell people how to do their family planning.

As a scientist, this mutated sperm explanation makes sense to me, and I think it is a path of investigation worth pursuing.  Scientists are, or should be compelled to look for alternative explanations for their observations.  Autism Spectrum Disorders (of which Asperger’s Syndrome is a part) can be expensive.  In addition to having mutated sperm, older men tend to have more money than younger men (who allegedly possess less mutated sperm).  Could financial resource be another player in this explanation for why I work with so many older dads?

The older dads I see at my school tend to arrive in business suits and ties, and nicer than average cars.  My guess is that this is what happens when you are successful at your profession and/or good with your finances for several decades.  And that is just the thing: the tuition at my school, the school dedicated to providing a holistic, nurturing, enriching and ideal academic and social environment to children with Asperger’s is steep; it is around $30,000 a year.  Paying this amount for a year of high school is probably more of an option for families with an older dads.

Truthfully though, $30,000 is more than I paid for my private, Catholic and life-changing college experience.  This is twice as much as I paid for my first new car.

In my research I found that $30,000:

  • is more than the cut-off poverty rate for a family of four in the US ($23,050 in 2012).
  • is more than the average annual income of the majority of the world’s population (average person’s income in 2007: $7,000).
  • is also more than most people in the US (perhaps 99% of them) can afford to pay out of pocket for high school or college.

Several years ago the City College of San Francisco (near where I live) hiked their tuition per unit by 30%.  This seems like a lot, and it of course caused actual protests (this is San Francisco, after all).  The cost of a unit of college is $46 in 2012.  A student can still get a full year of college education at City College for under $2,000.  Orion Academy costs $30,000 a year, or $120,000 for a high school diploma.

Your Spectrum child still has to get an education, and $30,000 is how much it costs at this time.  I have worked with and alongside the public school system in the US for a number of years, and in a number of different capacities.  If there is one thing I have learned about the public school system in America in all these years is that the public schools are great at educating traditional learners who want to learn.  Children who are smart, motivated, have involved parents, are physically and emotionally healthy, college-bound, driven, and athletic can do very well in the public school system.  Children who are not any of those things, except, perhaps, smart, traditional learners can also do well in the public schools.  Children who have any kind of non-traditional learning style, emotional problems, learning disabilities, or any other kind of disorder that impairs their learning (otherwise known as students eligible for Special Education services) are up a creek in the public school system.  This is not to say that there are not skilled and talented Special Ed teachers out there (my wife is one of them), but when everyone is fighting over scraps of food, someone is going to go hungry.  The public school system is a classic example of an institution that is chronically under-resourced.  It makes sense from a Natural Selection perspective to send an adequate amount of finite resource to people who benefit the most (traditional learners) and let the others fight for the leftovers.  Under the current system, children on the Spectrum really do need a specialized education.

Older dads seem to be part of the family team that can secure adequate education for their children on the Spectrum.  The parents who can convince (i.e., force) the public school districts to pay $30,000 a year for school tend to be those who are professionals (like lawyers, academics, health-care professionals) who use these same skills for their jobs, or are older and not easily intimidated.  Older people are also generally more well-informed and savvy than younger people, and can be better at getting their piece of the pie from a strapped public school system with Thunder Dome administrations.  Finally, older people tend to vote more and thus help fashion a democratic system that suits them well.

Attending a school for adolescents with Asperger’s though is just one piece of it.  Asperger’s only really starts with the diagnosis.  From there, the costs can add up.  Since Asperger’s is a neurological disorder (as opposed to a psychological or physical disorder), the best individual to recognize and diagnose Asperger’s is a neurologist or neuropsychologist, who can define the neurological, social, psychological and academic aspects of the disorder.  You should expected to pay about $5,000 for a thorough neuropychological examination.  You should also expect to pay a subsequent fee every three to five years for a follow up exam, or “updated” report, because if you want to apply for a specialized high school, or disability services in college, or accommodations on the SAT (all of which your child will likely need), you will need to have a neuropsych evaluation that is current.  I suspect the follow up neuropsych evaluation would be cheaper than the original, provided the original was accurate and thorough.  By the way, there are general no money back guarantees if the neuropsychologist gets it wrong.  Most families I work with have at least one professional report that truly missed the diagnostic mark.  For the record, Asperger’s is actually quite difficult to diagnose properly.

After that, you will need some therapy. A social skills group for young children can cost about $50 a week.  How long should they be in this group?  Probably forever, or until they get some better level of care (like the Social Skills Class I teach at my school, which is part of tuition) or married. Research is beginning to roll in about the benefits of early intervention for children on the Spectrum. (see http://sfari.org/news-and-opinion/news/2010/early-intervention-yields-big-benefits-for-children-with-autism).  In my experience, there is a noticeable boost in well-being, happiness, functionality, and ability that can be linked to age of first therapeutic intervention.  My experience is based on observation though, so I also trust the research that supports early intervention.  I would guess that more than 75% of our students have been in individual therapy by the time they graduate high school.  Individual therapy with a skilled therapist is invaluable for these children (and lots of others).  Most talented therapists I know have more referrals than they can see.  Regarding cost of therapy, one can expect to pay a “sliding fee scale” rate for an intern (it can be as cheap as $5 a session; I do not recommend this), $50-$80 an hour for a clinician who has a degree and a license but no special training in working with children with Asperger’s (I have seen this go terribly wrong as well).  I charge around $100-$120 an hour for my services, and always recommend weekly sessions to start.  My predecessors, the ones who trained me to do this work and are really the ones you want working with your child, especially if you are coming late to the game (i.e., late diagnosis, you put off intervention to see if you child would “grow out of Aspereger’s”, etc.) start around $150 an hour and can charge over $200 an hour.  You should expect treatment to be on order of months and years instead of weeks.  In the business we call this “long term therapy”.

There are other costs as well.  The last time a formal survey of children attending Orion was done, it was discovered that at least half of students were experiencing clinical levels of anxiety.  By my estimation, about 50-75% of our students are currently prescribed medication.  A routine check-up with a psychiatrist can cost from $75 to over $200.  A medication evaluation (the initial appointment), I could not even begin to guess, but prices probably vary.  After medication(s) is (are) titrated (i.e., correct dosage found), appointments can decrease from a frequency of every other week down to four times a year.  Less often than this is usually not recommended while your child is still chronologically a child.  Children and adolescents generally need closer and more frequent monitoring than adults due to the fact that they are still growing.

Table: A Year in the Life of an ASD Student

Service Cost Frequency Yearly Note
Private School   Tuition $30,000 Yearly $30,000
Neuropsych   Assessment $5000 Once (every 3-5   years) $5000 Needs to be updated   occasionally
Social Skills Group $50 Weekly $2500 50 Weeks a year
Individual Therapy $150 Weekly $5400 Attending about 3   times a week.
Psychiatry Initial Assessment $200 (?) Once $200 A guess
Psychiatry Check-up $200 (?) Quarterly $800 Another guess
Tutor $20/hour Twice Weekly $1200 College student   tutor, no summers

 

Estimated Annual Cost: ~$45,000

It is reasonable that your child will need a tutor, educational therapist, occupational therapist, job or life coach, and to live in your home longer than the average individual after graduating high school.  Asperger’s is an expensive diagnosis to get.  I know families who have moved in to smaller houses, cashed in college savings plans, had grandma move in with them instead of paying separate rent all for the purpose of keeping up with the cost of Asperger’s.  Who is more likely to have this kind of money on hand?  Older people are.  Older dads, especially, with established and well-paying careers.  Older dads who are not as subject to layoffs and economic downturns.  Older dads who have already sold a business or established a patent.  Older dads who might have a nicer car or vacation house to sell.  Older dads who usually budget nice vacations and can go without for a couple years.

It is not my intention to do finger-pointing.  I do not believe, and am not trying to suggest that money causes ASD.  As a clinician I also believe that there is little value to drawing a causal link between older dads and ASD.  Further, at this point in my career, I do not advocate a prevention approach to ASD.  Individuals with ASD add too much to the global community for me to ever suggest we would be better off without the disorder.  I have advocated in the past for symptom relief, and have emphatically opposed a “cure”.  I do, however, see a disparity in access to an adequate education for children on the Spectrum that is revealed, I believe, by this “older dad” observation.

I regret that I am part of the system that provides unequal access to families of children with Asperger’s.  I also admit that aside from charging less than I could for therapy and writing opinion pieces, there is not much more I do to correct this imbalance.  Even if the epidemic hypothesis of Autism was true (it probably is not), I can see the increasing numbers of children being diagnosed with ASD as potentially good news.  The more ASD cases there are, the harder it is to ignore or hide them away, to treat as the exception or “your bad, mutated sperm luck”.  To all parents of children on the Spectrum, or children you suspect are on the Spectrum, demand your rights from the schools, do your research, connect with your parenting communities, and sacrifice for those necessary services.  To all older dads out there, keep being the best dad you can be, and reject the notion that your mutated sperm (or anything else you did) made your child’s life more difficult than it had to be.  Was your life easy?  Of course not.  Your child’s life will also not be easy, but struggle produces character, and you can preside over and foster that transformation.  Finally, to those older, wealthy dads (and moms, too) out there, your influence does not have to stop at your child.  Schools need endowments to end unequal access to high-quality education for children on the Spectrum.  Even though IEPs are the expression of a Constitutional Right for some children, I would love to forever end the fight for the educational scraps with the American public school system.

Andrew Schlegelmilch, Ph. D. is a licensed clinical psychologist in Northern California.  He is Head Psychologist for Orion Academy, a high school for children diagnosed with Asperger’s Disorder, Non-Verbal Learning Disorder, and other neurocognitive disorders.  Dr. Schlegelmilch is Director of Summer Programming and Travel at Orion, and maintains a weekly blog for parents and professionals at www.orionacademy.blogspot.com

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One Response to “Why Money Matters”

  1. As one of the grey haired dads in your anecdotal study, let me add to the mix…My son is by no means the first in my extended family to exhibit what is now called Spectrum Behaviour. He is merely the first to be diagnosed.

    Why are these dads “older dads”? I suppose that the reasons are as varied as the dads, but let’s leave room for the theory that they are older dads because they lacked the social skills to figure out the dating and relationship game until later in life. So, the relationship between older fathers and ASD may, to some extent, be more hereditary than mutated.

    Luckily for my son, I come from a culture in which the primary use of money is to facilitate a better life for the children. I always took this to mean education, as opposed to giving them whatever their little hearts desired. For that reason, given the availability of a school that meets my son’s needs, there was never any question that the financial priority was to make that happen. As you say, being older certainly made it easy to afford it, but being raised to despise debt played a big part also.

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