by Kym Grosso, MBA

The seclusion rooms in my son's elementary school have been dismantled.  The so-called “quiet rooms” can no longer be used to isolate a child with autism against his will.  The rooms have been walled over with pretty pictures, yet the scars from their use are still apparent on some of the children and parents.  The victory is bittersweet as I fear that ignorance remains in the hearts and minds of those who used the rooms. 

After seeing the rooms for myself, I cannot stop thinking about how people justify this practice in their minds and wonder how they sleep at night.  I imagine a small child with autism being helplessly dragged into the room as he cries for his mother and father.  He is confused, overstimulated and upset as he pleads to be let out of the room.  Even though the doors are not locked, the adults who peer in at him are like prison guards.  Should he try to leave, he may be forced back into the room.  The child is forever afraid of the sight of the teacher and the seclusion room.  The scars are permanent even though we cannot see them.

As a mother, I am overwhelmed with the instinct to protect my child from those in the school system.  I find it hard to forgive the people who see nothing wrong with their actions.  Considering the pervasive discrimination against children with disabilities, I should not be surprised that my son attended a school where someone thought a seclusion room was a good idea.  My first “discrimination lesson” occurred when my health insurance company would not cover my son's OT services based on his autism diagnosis.  Then, once he started school, I met the parents who did not want their child to play with my child because my son had autism. 

But when we learned our son's elementary school built a seclusion room for the sole purpose of using it on children with autism, I did not jump to the conclusion that my son had been discriminated against, but he had.  Only children with autism were exposed to the “dirty little secret room”, not the typical children.  Only the children with autism saw their trusted teachers restraining one of their peers.  Only the children with autism heard another child cry to be let out of a “room within a room”.  Yes, the discrimination against my son with autism is not new but I cannot seem to shake the sadness of what happened to these children.

In the online news, I was struck by the many comments that supported the notion of locking children with autism in seclusion.  Who are these people who feel it is best to put children with autism in empty cement block closets?  Why does society feel it is acceptable to seclude and restrain children with autism but not typical children?  I suspect that children with autism are often seen as less human, like wild animals perhaps.  So in the minds of the ignorant, it becomes acceptable to discriminate and treat children with autism in an inhumane manner by secluding them. 

The truth is that discrimination knows many faces.  It can lie in the minds of teachers, principals, neighbors, family members and even the people who sit next to us in church.    This “seclusion room” experience has awakened me to the fervent discrimination that exists against those with disabilities and the great intolerance of those with differences.  Seclusion of children with autism is just another form of discrimination.  And as usually happens, those who are prejudiced often do not think they discriminate. 

Based on their discriminatory nature, seclusion rooms and restraints are usually reserved for the “autistic kids” not the “typical kids”.  Adults would not restrain and seclude a typical tantrumming 5-year-old who threw themselves onto the floor, kicking and screaming.  Most adults are aware that they if built a concrete, seclusion room in their home for their typical children, they would be arrested for child abuse.  But build one in an elementary school for children with autism, you are good to go, and it is legal. 

Even the current Pennsylvania education laws support the idea of discriminating via secluding children with autism in schools.  Consequently, those schools who perpetrate the usage of seclusion rooms quote the law as gospel.  They state the rooms are legal.  No one asks what is ethically right.  No one asks if seclusion is an evidenced based method for improving behavior.  No one asks if the children will suffer psychological damage or post-traumatic stress after being secluded.  The perpetrators even go as far to say “the children like it” or that they are “helping the children”.  The line that irritates me the most is, “We did it for the child's safety”, which I doubt is the real reason they used the room.  

So many times educators put a child in a seclusion room for “his safety” if he elopes out of a classroom.  I would argue that eloping in itself is not a danger.  It very much depends on the individual child and where the child is running.  The child is not in danger by merely running to the nurse's office or special ed room.  Now perhaps if the child tried to run out of the building every time he fled, that might be an issue.  But again, where is the child running?  To the playground to get away?  Or out to a busy highway?  Even then, what else has the school done to keep the child safe before resorting to a seclusion room?

In Pennsylvania, children with disabilities are supposed to be protected from the unnecessary use of restraints and seclusion by Chapter 14 education regulations.  While Chapter 14 is a step in the right direction, it does not go far enough to protect children with disabilities from abuse.  This regulation still allows schools to legally restrain and seclude children with little oversight or consequence.  Chapter 14 states that seclusion should only be used as “a last resort”.  In this context, the expression “last resort” means you have exhausted every other possible solution to a behavior issue.  So then the question becomes, “Did the school really use the seclusion room as a last resort?”  And can they prove it with untampered evidence such as videotapes, written documentation or independent witnesses?

Did the school implement an appropriate Positive Behavior Support Plan with input from ALL members of the IEP team, including the parents?  If yes and it didn't work, why didn't it work?  Is everyone who interacts with the child (parents, aides, teachers, bus driver, principal, etc.) aware of how they should or should not respond to the child's behavior?  Was a valid Functional Behavior Assessment done by a Behavior Specialist prior to the use of the seclusion room?  Did the school create a positive, safe, sensory room to where the child could run to instead of creating an empty seclusion room?  Did the school assign a PCA to go with the child so they would not be in danger?  Have the parents tried medications to help with the behavior?  Could the child's current medication be contributing to his behavior?  The list of questions goes on and on.

I honestly believe the use of seclusion rooms under Chapter 14 would be rare if schools truly used these rooms as “a last resort”.  And even in those cases, I would not agree that an empty concrete room is in the best interest of any child.  In fact, I would argue that this type of room is a cruel, inhumane way to treat a child no matter what the behavior.  If a real “quiet room” is created for children, with soft seating/padding, and is presented in a calming, positive way with sensory items, it may provide comfort to the child.  But this is not the type of room that is commonly seen in many public schools.  The bottom line is that Chapter 14 does not go far enough to restrict schools from using and abusing seclusion and restraint.

Society's acceptance of seclusion rooms is borne out of ignorance about children with autism – plain and simple.  Schools, behavior specialists and even parents need to help educate the educators so they have other options besides seclusion and restraint.  Many educators express their frustration as “The children are simply out of control.” or “What else are we supposed to do?”  Education is key to helping people understand behavior principles, behavior plans and how to successfully implement positive behavior practices in a school environment.  This the only way we can achieve the elimination of seclusion and restraint.  One one thing is for sure, behaviors associated with autism won't just go away on their own.

As we rely on legislators to fight for our children by introducing legislation to ban seclusion and restraint, parents need to be aware that the builders and users of seclusion rooms are going to fight hard to keep them.  They will argue that they need seclusion rooms for our feral, autistic children who are simply “unsafe”.  As others who have a prejudice, they either don't realize the discriminatory nature of seclusion rooms or they don't care.  I am convinced that ignorance about autism and behavior management is the primary reason the administrators think they “need” the rooms.  Whatever the reasons, expect the perpetrators and the schools who use these barbaric isolation cells to defend their use, because they will. 

The face of discrimination is ignorance.  No matter what the prejudices are, ignorance is the seed from which discrimination grows.  When you don't have a child with autism, it is much easier to think of children with autism as less than human.  No matter what you tell yourself, seclusion is not an ethical way to treat a child.  If you are a school administrator or teacher who simply cannot accept life without seclusion and restraint and do not really want to use positive behavioral supports, you should find another line of work, because children with autism deserve better. 

My son, and other children with autism, are entitled to the same respect and dignity we provide typical children.  Autism does not negate his humanity nor does it exclude him from the emotional pain associated with seclusion and restraint.  Seclusion in schools needs to be called out for what it really is.  It is a degrading and inhumane way to treat a human being.  It is discrimination in its most basic form, and it is time for it to end.

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A Special Note to Parents of Children with Autism
Tonight, my son sleeps knowing he will not be restrained or put into a seclusion room against his will based upon his disability.  But there are seclusion rooms at a local school near you where discrimination is waiting for your child.  Seclusion rooms are peppered in districts all over the state.  Find out what is happening in your school.  What you don't know, could hurt your child.  You may have consented to a seclusion room in your IEP and you don't even know it.

I encourage parents and professionals to write your state and federal legislators to ask them to end the abuse and discrimination against our children.  As long as it is legal, you could wake up one day and find out your child has been restrained and secluded against his/her will. 

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