This life has tried to tear me down one little heartbreak at a time, but I never let it. This is how I became such a strong person.
Pitfalls of Standardized Testing
I want to better demonstrate why it mattered so much that we did not get the autism diagnosis early on. After hearing autism mentioned during an assessment, we had an evaluation done by Team Evaluation Center November 1991 through February 1992. Jessica was 4-years-old. Below are some findings pulled from the assessments…
NURSING ASSESSMENT – 2 testing days, 2.5 hours each. Developmental tests used for sighted children required more visual skills than she appears to have. During another assessment there were several skills she was unable to complete because she had not yet been exposed to Braille-type activities. Her lowest scoring area was socialization. There were multiple references to her short attention span and inability to sit and complete activities, but it was noted that she would play with a phone cord for 5-10 minutes.
SPEECH LANGUAGE ASSESSMENT – Articulation is very age appropriate. Speech and voice quality is good and fluency of speech was within normal limits. However, receptive and expressive language skills measured significantly below chronological age. There is evidence of ongoing pronoun reversal. She had significant difficulty responding to basic question forms and maintaining topic of conversation. Obvious attentional difficulties.
CLINICAL-PSYCHOLOGICAL ASSESSMENT – This one is the kicker. Maybe this clinician was from another planet or something. After one session she noted that Jess did not demonstrate significant impairment in reciprocal social interaction, communication, or have odd activities and interests to warrant a diagnosis of autism. She also said that Jess was not significantly distractible, impulsive, or physically restless enough to diagnose with ADHD. Maybe she decided to completely disregard the other team members’ assessment. Maybe she forgot to read them or did not want to read them. But in essence, in her five-page report she made claims to the opposite of everything every other assessment Jess had ever had. Final word on autism? The Childhood Autism Rating Scale (CARS) – “Did NOT reflect significant impairment indicative of autism.” Ugh! Diagnosis? Developmental Disorder NOS
We, Jessica’s family, always knew her to be extremely perceptive/smart and knew how to converse and communicate with her. As a family, we understood her personality and her quirks. As we entered the school system, it became apparent that others did not understand those things.
As I explained in The Beginning and Blind Forevermore, Jessica had Cortical Blindness (aka CVI). Following is a brief review of her visual function as of 08/13/1992. You will later see why this is important for this story…
FUNCTIONAL VISION –
- Relies on feedback and auditory cues rather than vision.
- Ignores right field of vision.
- Not able to imitate body movements, facial expressions, block designs, or drawing tasks using visual abilities.
- Unable to locate a raisin box on a chair directly beside her.
- Unable to consistently find objects on a table without using hands or sound cues.
- Unable to label any large pictures presented by the teacher.
Fast forward 2 years to September 1994. Standardized testing was done at school to determine the most appropriate placement. The tests administered were for visually functioning children. When the examiner told me the results, I was floored. Jess tested at the level of Moderately Intellectually Impaired. It was truly devastating and we totally disagreed.
We asked if any accommodations were made for Jessica’s vision impairment. The answer was, “No!” We were told they were not allowed to alter the standardized test. Here are examples taken from the report where she was penalized because she was unable to see the test materials.
- Vocabulary subtest – Jess did not respond to the picture she was shown.
- Quantitative subtest – Jess was unable to do any items because she couldn’t match (visually).
- Comprehension subtest – Jess was unable to point to any of the body parts on the doll picture. However, out of limits testing indicated she could identify the parts of her own body.
- Jess was resistant to the testing situation as she was non-compliant, had an extremely short attention span, as well as echolalia and perseveration.
(I wonder if any of that had anything to do with the fact that this woman kept asking this blind child to look at pictures over and over again.)
Other things in the report:
- Unable to trace uppercase letters, or copy or print her first name.
- Unable to draw a person.
- Unable to copy a cross, an X, and a square.
- Unable to tell what to do if she see’s a house on fire.
- Extremely short attention span.
- Extreme difficulty in relating to peers.
- On the playground Jess walks around tapping and talking to herself.
The bottom line was that the school system now had an appropriate placement for her because their test said so. She was to be in the Moderately Intellectually Disabled class. She would be bored and under stimulated. And that label would be stuck with her for the rest of her school career. Belief in her abilities would diminish, expectations would be lowered, and she would be offered less opportunity for intellectual growth, development and achievement. I firmly believe that unfair, inappropriate evaluation had a negative impact on Jessica, and the rest of the family, for the rest of her life.
We are very lucky that Jess helps keep us entertained with funny comments all the time. Even after nearly being in tears after reviewing all of this data, I was able to wrap it up with a good laugh from the past. This was my favorite thing to read in the whole report…
- When asked, “what is this color?” Jess answered, “We’re having pizza today.”
Next: Right to Independent Evaluation
Val I truly can feel your angst reading some sections of Jessica’s developmental story … I can imagine back then and perhaps even now children get slotted in somewhere that some person deemed the professional decided they fitted rather than looking at a child as on a continuum. I have watched as some children that are diagnosed as on the spectrum and some with sensory disorders have been misplaced even this year 2019 at our local public school. I have seen children presenting with antisocial behaviour because of these difficulties be labelled too hard basket and because of the lack of funding for aids to be present with them they have subsequently been suspended and parents told to home school them…so the frustrations continue for educating appropriately impaired children to this day. I can see you turned over every stone and presented the best that was on offer at the time to your daughter… and what a profoundly wonderful job you have done !!!
You are amazing … please don’t second guess yourself. ????
Thank you. I did try so hard while muddling my way through and it comforts me to know I left no stone unturned.
I have had others also tell me the system is still broken. That is so completely disheartening to hear. ?
I know these are old posts, but thank you! One of my summer projects is writing down some of my observations/thoughts for one of my students who has been evaluated twice in the past but not found to be autistic. Grandma and I want to fight that-thank you for the reminder and motivation to keep fighting for him.
Sarah, Thanks. This issue will probably never completely go away. Thank you for fighting the fight for your student! That’s wonderful!
That’s jess … worried about what we are eating! How frustrating, as a parent to know the “label” is incorrect. Of course the professionals look at you like poor mom you are in denial.
Even though we all lived through these unbelievable episodes, it must still be very difficult for most people to imagine this. Just wonder why there is so much ongoing controversy and skepticism about standardized testing! While Jessica’s placement was the focus for our family, it is sad but true that too many other children also get incorrect labels and placements, the results of which follow them forever. As imperative as parental advocacy is, even that, as your readers can see, had its limitations. Thankfully, the search for the truth did not end with these tests. Jessica had the advantage of parents who would not settle for the results of standardized testing.
I can’t imagine how difficult that all must have been. What a blessing that Jess has family that believes in and encourages her.
I can’t even begin to imagine the level of frustration you must have had to deal with running into these roadblocks and downright stupidity during Jessica’s school journey. Just reading this made me ANGRY. To think that her classroom placement was based on testing for a sighted child just floors me! It makes no sense! You have fought so hard for Jessica and she’s so lucky to have such a smart amazing family who really, truly “get” her.
Rebecca, I got all worked up again when I read those reports again a day or two ago. I literally almost cried. But I was rescued by Jessica’s pizza comment from long ago.