One of my children had testing today for school to re-evaluate his Autism. For those who are unaware, this is the testing they make the kids go through every 3 years to demonstrate they still have Autism. Allow that to sink in for a moment. Although it is widely known and accepted that Autism is lifelong, it is part of neurological development, and it will not simply disappear, the schools in this country force these children, from aged 3 through graduation, to undergo a long series of tiring, frustrating, and monotonous testing every 3 years, just in case they can remove their IEP assistance because the school deems them not Autistic anymore. This has zero to do with medical diagnosis and, in fact, no medical or psychiatric provider for the child is involved. This is extremely challenging and stressful for the child, difficult to manage for the parent, and a waste of time and resources, yet is required for your child to get even the smallest of accommodations, such as testing in a private room or extra time during exams.
This testing involves 4 different parts: speech and language, psychological, educational, and social history. It requires a LOT of time and effort on the part of the child and the parent to do. My son (who has provided consent for me to share this in the hopes that it will change) is currently 16 and undergoing testing, again. He expressed extreme frustration to me and to the tester when I dropped him off for his first 3 hour segment of testing. He firmly informed the tester that he saw this as “silly” because he is and always will be Autistic. Her response was that it was required so there was no choice (we are doing it because it has always been done this way type of responses annoy me!).
Not even half-way into the testing, my phone rang. Although it was from my son’s phone, the tester was on the other side of the call. She informed me that she was concerned for his mental state and that I needed to come and get him immediately. I arrived at the school five minutes later and could instantly tell he was in shut-down mode. (Shut down, for those who don’t know, is similar to a melt down, without the crying and lower levels of fear.) He was pale, looking at the floor, responding very little, but in a flat manner. I sent him to the car (no worries, air was on!) and spoke to the tester. She told me he began becoming highly anxious shortly after testing began. She moved him to the sensory room and continued. He began attempting to refuse to continue, stating he was struggling and couldn’t understand, but she pressed him to continue. He then began having what she deemed “hallucinations” and became extremely agitated. She eventually ended the testing and called me.
His side of things is very different. He worked on the testing until they got to the portion where they test short term memory. (Note that this is a common area where Autistic people struggle). He stated she told him he had to repeat a series of numbers after her which got progressively longer. He began to stumble and become very upset and anxious as he knew he wasn’t doing “well”. She moved on to having him remember a series of objects, some of which were things he classified as “weapons”, which caused him further anxiety. He said she was talking too fast and he couldn’t understand what she was saying. He told her he could not go on as he was becoming very upset but he stated he was told he had to keep going. He stated things blurred together and he started seeing disturbing things in his mind (imagination – he commonly escapes into his mind when troubled). He told her he knew they were thoughts but it was his brain’s way of saying it was too much. She still forced him to continue until he completely shut down. He was visibly distressed when I arrived and begged me not to make him do the testing. He said they “don’t listen” to him when he says it’s too much and that he knows he is “failing” the tests.
My first problem (out of many), is that they ignored a person’s insistence that they needed to stop and couldn’t continue. Regardless of the age of the person, they need to respect their limits. Due to this lack of respect for his limitations, he is now still suffering the effects several hours later. His day is over, essentially, as he will not have the strength to do anything else other than hide out in a quiet, dark place, rocking and stimming to try to recenter. He won’t be going to the pool as he had planned. He won’t be enjoying the sunshine riding his bike. He will be in recovery for at least the rest of the day. This was unnecessary and points to a huge issue Autistic people, particularly children, face. Many people ignore the limits and needs of those with Autism, just as they ignore their strengths and talents.
Second, this testing was presented as a pass/fail testing, which is clearly is not. This adds significant stress. This is due to Autism being viewed through a medical model, and not a social or human rights model. Because it is viewed medically in a non-medical setting, it is “normal” or “abnormal”, “pass” or “fail”. This puts extreme pressure on the Autistic to try to pretend and mask because they don’t want to “fail”. If they do too good of a job, they inadvertently test themselves out of any type of assistance. If they do too poorly a job, they test themselves into stricter and more limiting accommodations than they need. Either way, they end up burnt out, exhausted, stressed, and anxious. The worst part is that it is all unnecessary. First, the person should be tested against themselves, not some theoretical “norm”. This “norm” changes frequently so, just because you fall within the “norm” now does not mean you will in 5 years. All the testing that was done on him 10 years ago is worthless now because the norm shifted. Second, they need to do this in a manner that is not “normal”/”abnormal” or “pass”/”fail”. They already stress kids enough with standardized testing and then they add this on kids who are already vulnerable to anxiety. He should have gone in and been reassured by the testers (as he was by his mom) that this is just to see how he’s doing and that he should only do what he knows and is comfortable with. That isn’t what happened. He was put under extreme pressure and became increasingly anxious when he began to “fail”.
This must stop. This is not only happening to Autistic people. Did you know, if you are deaf, you will have to undergo this same testing to make sure you are still needing services because you are still deaf? The same applies for any disability or difference. If you need any type of accommodation at all, you will undergo this constant scrutiny to see if you have crossed the line enough into “normal” so that they do not have to help you anymore. Autism is life long and all this testing is doing is causing meltdowns, shut downs, stress, anxiety, and wasting resources. If they were Autistic 3 years ago, they still are now. We have tons of IEP meetings, discussions, teacher conferences, and constantly update goals, needs, and objectives. This testing is completely unnecessary. I have to go through a social history every time. My pregnancy with him still hasn’t changed. His parents still haven’t changed. If there were major life events, they already are well aware of them. If there are relationship issues, either they already know or it’s none of their business. Why do I have to spend 2 to 3 hours every 3 years to tell them the exact same things? The social history is actually sometimes used to deny Autistic assistance under the assumption the challenges come from stress at home or toxic environments, both ideas which have been soundly disproved. The educational system still holds on to the thought that Autism symptoms may be due to poor parenting or bad home life, which is why they try to scrutinize your family history again and again.
Thank you for listening to me vent. I am going to see if I can find a way to help him climb out of the darkness and fear that he was shoved into today. Stay safe and remember to be YOU!