There is a severe disconnect between what people know about Autism, and what people think they know about Autism. This is especially illuminated in the public education system. Ask any parent of an autistic child, and they can regale you with dozens of horror stories they have personally experienced when it comes to dealing with the public school their child(ren) attend, and the employees of that school. When I say employees, I am including all teachers, counselors, administrative staff, and everyone in between.
It has become a morbid joke when someone mentions the term “I.E.P.” (Individualized Education Plan), which is the governing document that is supposed to outline protocol the school should follow to provide the best possible Free and Appropriate Public Education, or FAPE, as it is commonly called, for an autistic student. The IEP is a legally binding document, and falls under the Federal protection of the IDEA (the Individual with Disabilities Education Act). Mention the term IEP in a room of parents of autistic children and you can go down the line watching their collective faces scrunch up in a pained expression and hear the groans echoing against the walls. There are memes galore depicting the angst and frustration that nearly all parents express when the almighty IEP is ignored or neglected. It is a sad, frustrating joke that isn’t really very funny at all.
Less well known than the IEP is the BIP, or Behavior Intervention Plan. Behavior intervention is meant to do exactly as its name implies, intervene on certain behaviors before they become harmful or unduly disruptive to the general classroom environment. It is part of the IEP, and it details exact measures that should be taken by all school personnel to prevent a child’s meltdown and subsequent potential harm to the student or anyone else in the immediate area.
Some things that can be included in the BIP are:
- Use of visual cues to help during times of inability to speak
- Positive encouragement and frequent rewards for sustained positive engagement in classroom activities
- Instructions for staff to not bombard the student with words when they know it will push the student into further distress and/or meltdown.
- Frequent advanced time warnings for transitioning to new activities and/or classes.
The BIP can (and should) be customized for each individual student. No two students are going to respond in exactly the same way to the same stimuli. Some students need a break in the class time to perform a physical exercise as a way to express their pent-up energy. Some need silence as they work to regulate themselves.
These methods have been put in place so that there will be consistency across the board between the full-time school staff and potential temporary staff that a student may encounter, such as a substitute teacher, or a volunteer for field trips.
Autistic children thrive in consistent and predictable environments. School is challenging enough for any child, but more so for those on the spectrum. It is a matter of degrees. Some students need only mild accommodations, and others need much more assistance, such as a one-on-one aide in the classroom, speech therapy several times per week, or counseling. This is independent of whether or not a student is on any medication for anxiety, attention struggles, and the like. There is no ‘treatment’ for Autism, strictly speaking, just as there is no cure. Autism is not a disease after all, but a spectrum of variant neurotypes, resulting in the coining of the term neurodiverse by the general Autistic community worldwide.
But what happens when these measures are not adhered to? When there is a breakdown in communication among the school staff, the student suffers, sometimes with consequences that cause even more suffering for them. The BIP and IEP are in place for a legitimate reason, and that is to prevent these from occurring. Once a meltdown stage is reached, the child goes into what is known as ‘fight or flight’ mode. We hear about fight or flight often with such circumstances in adults when they face some trauma, and their adrenaline spikes, which is the body’s way of responding to sudden, unexpected, abrupt change. This occurs in children as well and in their autistic mind, these changes are considered trauma. The body responds accordingly, and the behavior follows suit.
Children have a difficult enough time regulating themselves even when they are not autistic. For an autistic child however, it is exponentially more challenging, as they often lose the ability to verbalize their feelings, needs, or fears. Autistic children retreat into their mind (hence the term Autism itself, as the root of the word means ‘self’), and a barrier comes up that prevents them from filtering in any outside influence such as verbal instructions or even physical cues.
Let’s imagine a scenario where a child has a specific BIP in place, and for the past year, has dealt with sudden and unexpected change in the form of resigning staff, teachers, ever-changing one-on-one aides. These are people the child is supposed to trust when he is most vulnerable, and these people are supposed to be the ones most knowledgeable of his specific needs within the school environment. The revolving door of new people is especially distressing for an autistic student, and he struggles to adapt as best he can.
Now let’s imagine this same student is also laboring to deal with his every day challenges of bells ringing, other students talking loudly, bright fluorescent lights, the humming of air conditioning units, pencil sharpeners, shoes squeaking on the floor, the smell of dry-erase markers, and struggling to focus on his work, the teacher’s words, and trying to keep from being distracted by the sensory onslaught going on all around him. He becomes quieter than normal, and his ability to verbalize diminishes. His head lowers even further as he attempts to focus, squinting his eyes to try and keep the words on his school-provided laptop from blurring too badly for him to see, to keep breathing normally, even as his heart rate increases, and his mind starts to spin, a never-ending buzz of sound waves, light waves, vibrations from 26 other bodies in the room, perfumes, deodorants, all melding together in one huge conglomeration.
In between all of this, his ability to focus and reason diminishes. His vision is blurring, and he’s fast approaching meltdown. This is where the behavior intervention plan is critical. The procedures set in place are to head that meltdown off at the pass. They are tools that will allow the student to calm down and avoid possibly harming himself or others in a state of involuntary stress response.
When school personnel ignore or neglect to follow these explicit instructions, again, the student is the one who suffers. This can result in violence, of either self-harm or lashing out physically and verbally against anyone in the immediate area. Some children begin screaming, some crying, some hitting and throwing objects around the room.
Faced with all of that, it begs the question: what are we, as parents, supposed to do when we know these meltdowns occur as a direct result of ignoring the instructions in a student’s BIP/IEP? That’s where things become muddy and unclear. There are specific sanctions in place for violating a student’s IEP, but rarely is it enforced, if ever. Most often nothing is done until a parent bankrupts themselves to hire an attorney and has to appeal at the state level for some type of action to be taken on behalf of their child.
This is the chief source of frustration and resentment among parents of autistic children. They know their children best, they often know best how to circumvent meltdowns in their children, and they work in good faith with team members from the school to help their child succeed in the general education classroom. The IEP team is supposed to be a cohesive unit, an actual team, but my personal experience has taught me that there is a definite line separating the parent from the school. There is an underlying ‘us vs. them’ tension that belies the pretty words of “we’re all here for the good of the student.” I have personally seen the wonderment that comes from a solid team that does act together for the student’s best chances, and also seen the flat expressions from other such ‘teams’ that are anything but. It’s great when it works, but that’s an educational unicorn.
But if these procedures are ignored, time after time, ad nauseum, what recourse do parents have? If the IEP / BIP is ignored and the student melts down, if that results in violent behavior and a staff member is hit, bit, or scratched, is it the child’s fault? The parents’? Is it the school’s fault for not reinforcing the need for strict adherence to federal, legally binding instructions by all of its staff members? Or is it the staff member’s individual fault for ignoring it themselves? If they had followed the procedures set in place, the meltdown would not have occurred, and no violence would have occurred. You can argue that schools are over-crowded, under-funded, and I wholeheartedly agree. But teachers chose this profession. So did the one-on-one aides. They are supposed to make sure they are equipped mentally and emotionally to meet the challenges of autistic children in their classrooms.
No parent wants their child to suffer needlessly. And often when the parent is a neurotypical (a term describing a non-autistic person), they struggle heavily to understand their own child’s needs or how best to help them learn appropriate coping skills for their particular challenges. No school wants to feel they have let down a child with special needs. No teacher whom I know wants that, either. It’s a safe generalization to say that no rationally thinking, compassionate person actively wants a child to suffer, regardless of the reason.
Going on that assumption then, what do we do? How do we demonstrate just how absolutely critical an element the IEP is in determining how successfully an autistic student navigates his or her way through school from K to grade 12?
For starters, having school districts actually enforce the disciplinary procedures for continual violations of the IEP would help tremendously. There are clearly defined rules and subsequent consequences for breaking those rules. The IEP has been around a long time, long enough that the consistent violations of such should herald a swift, strong, and direct response from the school and the district.
If we teach our children that rules are there for a reason, and that there are consequences for breaking those rules, even if sometimes it is unplanned, then we should hold adults to the same if not stricter standards. Stricter because adults have the benefit of a fully developed frontal cortex, and so they have the capacity to comprehend much better than a nine-year old.
The age of complacency in the educational needs of autistic children has long passed. If we follow the old saying, ‘know better, do better’, then the adults who persistently stand back and allow 3rd graders to have the police called on them when the aide provokes that child into a meltdown, should be ashamed of themselves. The blame lies at their feet, not the child’s.