A Note on Autism Assessments: Time and Money
In a previous post, I started to share the written report that followed my most recent assessment. I want to clarify some things based on private emails and the public comment posted.
Read the previous post at: Autism Assessment, Part 1.
First, and most importantly, even though my 2006 assessment was mere a "confirmation" for the University of Minnesota, it was neither a short nor an inexpensive process. The interviews of my wife, notes and comments from my parents, the interview with me, and the review of neurological exams required some time before the testing was performed. Reviewing records and interviews is expensive and time-consuming.
We even tried to locate a copy of the 1976 assessment. The confirmation for the U. of Minn. was required to either support or challenge previous assessments and diagnoses. The diagnostic criteria for various conditions and the evaluation instruments have been revised repeatedly during my 40+ years of life.
The actual exams are administered by three different individuals, not including the neurological scans and tests. You can see why this can be an expensive process with technicians, physicians, psychologists, and at least one psychiatrist (M.D. / Ph.D.) in mix.
The exams take days, and were not consecutively administered (thankfully). There were at least a dozen related appointments during the late fall months of 2006 before the written assessment was issued on December 4, 2006. Those tests are not cheap and insurance did not pay for everything.
By comparison, the local school district paid for any evaluations done in 1976. I wish that were available to all parents, but at the time I was listed as "birth trauma" and "brain trauma" in the student records. A brain injury, which is considered a physical handicap, qualified me for free evaluation. My parents probably remember far more about that than I do, since I was only eight.
I'm not sure what parents are supposed to do when a school or public service requires an updated or new evaluation. I'm sorry to report that I don't have any great suggestions. My advice would be to contact local universities with autism specialists. Maybe they know of free or subsidized assessment services.
Remember, a "school psychologist" is not the same as a clinician. The evaluation I received in 1976 would not and does not meet most university standards. I've mentioned this before: the educational standards and licensing are different for school support personnel when compared to practicing independent clinicians. That doesn't mean some psychologists are not employed by schools; you might be in a district with a licensed clinician.
I'll be posting more of the written notes from the neuropsychologist this week, but I cannot (since I wasn't there) write anything about the interview my wife had with the team or what other family members might or might not have reported to evaluators during previous assessments.
Read the previous post at: Autism Assessment, Part 1.
First, and most importantly, even though my 2006 assessment was mere a "confirmation" for the University of Minnesota, it was neither a short nor an inexpensive process. The interviews of my wife, notes and comments from my parents, the interview with me, and the review of neurological exams required some time before the testing was performed. Reviewing records and interviews is expensive and time-consuming.
We even tried to locate a copy of the 1976 assessment. The confirmation for the U. of Minn. was required to either support or challenge previous assessments and diagnoses. The diagnostic criteria for various conditions and the evaluation instruments have been revised repeatedly during my 40+ years of life.
The actual exams are administered by three different individuals, not including the neurological scans and tests. You can see why this can be an expensive process with technicians, physicians, psychologists, and at least one psychiatrist (M.D. / Ph.D.) in mix.
The exams take days, and were not consecutively administered (thankfully). There were at least a dozen related appointments during the late fall months of 2006 before the written assessment was issued on December 4, 2006. Those tests are not cheap and insurance did not pay for everything.
By comparison, the local school district paid for any evaluations done in 1976. I wish that were available to all parents, but at the time I was listed as "birth trauma" and "brain trauma" in the student records. A brain injury, which is considered a physical handicap, qualified me for free evaluation. My parents probably remember far more about that than I do, since I was only eight.
I'm not sure what parents are supposed to do when a school or public service requires an updated or new evaluation. I'm sorry to report that I don't have any great suggestions. My advice would be to contact local universities with autism specialists. Maybe they know of free or subsidized assessment services.
Remember, a "school psychologist" is not the same as a clinician. The evaluation I received in 1976 would not and does not meet most university standards. I've mentioned this before: the educational standards and licensing are different for school support personnel when compared to practicing independent clinicians. That doesn't mean some psychologists are not employed by schools; you might be in a district with a licensed clinician.
I'll be posting more of the written notes from the neuropsychologist this week, but I cannot (since I wasn't there) write anything about the interview my wife had with the team or what other family members might or might not have reported to evaluators during previous assessments.
I can attest that it is extremely difficult for an adult that is high functioning to get a diagnosis. There are many reasons, most of which you outlined here. Primary school records are expunged, parents die, psychiatrists die (that was in my case). For those reasons, and the very strict clinical guidelines for a diagnosis, when someone claims they have a valid diagnosis which they first obtained as adults, I'm highly skeptical.
ReplyDeleteThere is one person in the autism community that has appeared on national news broadcasts that obtained a diagnosis in her adulthood. However, an archive research of her history thoroughly disproves that she was a low functioning autistic before her diagnosis (diagnosis was done outside of clinical standards, she made the mistake of publishing it). In fact, she was exceptional by any measure and attended private schools and gifted and talented programs. Led a normal if not exceptional life before she became "severely autistic." However, she did do a great service because its now come out that another well known "autistic" author was never autistic either, as her critics contended.
These diagnosis are being too easily thrown out by shrinks that have no business or expertise in giving them. Because of that, real autistic people are going to be casualties.
I would not argue that I was, beyond my first year of life, anything "severe" or whatever people want to call it. My parents also had strong views on the matter -- I was not to be treated as disabled by friends and family. It was a different time, yes, but I also wonder if that helped me in some ways.
ReplyDeleteAfter 1976, I had different supports than I had received before second and third grades. That was because the IQ test moved me into a more mainstream situation and eventually into the GATE (Gifted and Talented Education) program in grades six, not seven, and back into GATE in grade eight. My performance socially was deemed too uneven at times.
So, I'm not sure GATE alone is a good measure of social impairment. I am "gifted" by most administered tests. However, gifted did not help me get through university programs. I openly admit I left USC before finishing my last year (I already had two degrees by that time) due to social skills problems. I dropped out of four attempts to complete my M.A. degree. In one case, CSU Fullerton, an advisor told me I made people feel really uncomfortable and they'd prefer I live off campus. I ended up trying to commute 200 miles twice a week to stay in school, but couldn't do it.
Social impairments and intellect can and do coexist. It is a miserable feeling to know you could complete a degree, if they instructors could tolerate your presence in the classroom and if you, in turn, could stop "acting" weirdly in the eyes of others.
A mere read of my academic record would lead too many people to assume I am "fine" or "exceptional" without understanding the experiences.
I would never venture to suggest someone does or does not have "autistic" traits. I still don't completely or comfortably embrace the label because I believe we should delineate clearly between classic autism and those of us with the minimal skills needed for a form of independence.