A couple of months ago, my husband and I requested an updated autism assessment to be done on our son. This would determine where he is currently, as far as, his communication, social and academic skills are concerned. The results came in, and needless to say, I was not shocked but I wasn’t pleased either. I read it in complete awe that who my son is was reduced to adjectives and phrases that should not be spoken, let alone, written without a “but” to accompany his strengths. This bit of knowledge precedes him (wherever he goes) with no interjections of progress and abilities. He is “low range.” He is “functioning significantly below the average range.” “His overall language abilities are deficient.” He has “grammatical weaknesses….speech impairment….and his educational achievement are extremely low.” The school year is coming to an end and I wonder immensely what has become of it. Other than being enlightened and abreast on some much needed life skills, he has not been prepared for the adventure that high school will bring. A matter of fact, the measurement of growth from school beginning to school ending is in a lot of ways disappointing. He’s really no taller than he was when he first arrived. But then I ponder if that’s all that was expected of him. It would certainly explain the “low, very low and extremely low” that draped the paperwork, given to me as if the Sound of Music was playing softly in the background and all was thought to be well. Let me be the first to insert that I am not blind to the autism that settles in the atmosphere around us. Callie has delays – yes! He has some weaknesses – I know! Understanding can be challenging – True! Change and meltdowns go hand and hand – I am fully aware! Routine is a close friend – Absolutely! I know my son. The details of the report did not blow me away. The conclusion did. As a whole, the representation of Callie was dim, lost and unachievable. He was painted as if progress was nonexistent. The road less traveled seemed to be traveled by many….and Callie appeared to be among the multitudes with the “Different, Not Less” sign attached, but “different” and “less” are crossed out and “less” is left protruding out – with no doubt of what the true perception of these individuals are. Unfortunately, that was not the worst part. As you may know, parents are given a questionnaire to fill out also. I’ve always had a problem rating my child. If you know anything about autism, you know that each child is different and they learn differently. Some of the questions would have required Callie to have had prior experience. If not, then he is labeled “never” or “is not able” or “guess.” So, let me explain the rating scale. It includes “is not able,” “never,” “sometimes,” “always or almost always when needed,” and “guess.” I checked guess on many scenarios because my child had not yet experienced some of what was listed. I was told twice that an interview would have to be done, which I had planned on asking for one, especially after not feeling like my son’s character and capabilities could be narrowed down in a rating scale. This would allow me an opportunity to clarify. I thought this was great! I wanted a chance to expound. I didn’t want my “guess” answers to suggest incompetence on Callie’s part. Some of the moments in question had not come around. However, instead of an explanation, I received an IEP meeting invite to discuss the results of the evaluation. That afternoon, Callie brought me the diagnostician’s summary. How could a summary be made if my part was not sufficiently spelled out? And what kind of parent am I if my check marks convey anything other than what I know about my child? I was later told that my answers wouldn’t change the results of the test or Callie’s services. So, there was no need to revisit the parent’s portion of the assessment. No need to revisit? And according to the summary, my ratings were “considered uninterpretable” anyway. “Uninterpretable” meant I had too many “guess” boxes checked. The final line in the report stated “the findings and judgments expressed here are an accurate reflection of the information available for this report.” What information? I didn’t get to have a voice, so how could it be accurate? The only data gathered was from her, his teacher and his speech therapist….none of who, by the way, submitted anything remotely that resembled growth or improvement. But I can swallow that for the time being, as long as, I can also illustrate on paper and in word the boy they do not see or really know. Allow me to bring a movie reel of his 14 years of living. Give me the floor so I can talk endlessly about his courage, his stamina, his resilience, his persistence, his heart — and yes, many of these words are equals but place them beside my son and the meanings go beyond Webster’s translation. Give him a chance to show you he can go to a school restroom by himself, so he won’t be judged and rated poorly and unfairly because he doesn’t go to one in a public setting (as asked on the questionnaire – ex. amusement park, movie theater or mall) where predators often lurk to lure kids who are not aware of the dangers that roam about. Sorry! I’m a tad overprotective! Don’t count him out because he doesn’t cut meats into bite size pieces or he doesn’t go out of the house alone unsupervised in the daytime. First of all, the only meat he eats is chicken legs and chicken nuggets. No cutting required. And Callie never goes out alone. Can he? I’m sure he can, but as you may or may not be aware, many children with autism have the potential to wander. Callie has on occasion. Not happening! A generalize questionnaire does not fit every child. To expect parents to categorize their children in a certain box means they are either limiting their child or they too are judging them for their weaknesses and inabilities in a particular area, especially without giving them a chance to go in details about the ups AND downs of their journey. And labeling parents and their answers as “uninterpretable” does not speak highly of them as a parent or them knowing their child. In order to fully assess a child with special needs with accuracy, a parent’s input is vital. How can an evaluation be complete if you only base it on school officials and their observations? Sometimes the way a child behaves at school is so different than at home. The person administering the test and the environment that the test is given may alter how a child responds. The questions asked without explanation or cues may have the child confused, unsure and scared. Everything has to be taken into account. A diagnosis shouldn’t lock a child out of the world of expectation and possibility. There’s more to these kids than what’s written down on paper. And to say the story the parent knows is not needed ( no matter what the reason is) goes against their rights as the parent. Beyond that, one fraction of the story is revealed, leaving the reader’s perception of the report to be one sided.
We discussed the results in the IEP meeting. Our concerns weren’t understood. And that was ok, because the following week, we met with the District’s Director of Special Education. Our voice was heard there and the assessment was considered incomplete. A representative from the district redid the questionnaire.
This year has been a long and overwhelming one for us all. My head pounds at the thought of the upcoming road ahead to high school. But I’m grateful that this year has come to an end. We made it! Peaks, valleys and everything in between. However, the boxing gloves will not retire as summer approaches. There is still work to be done. For Callie, the fight continues.
Thanks for listening,