It’s a start . . .

Don’t get me wrong, the teacher, Ms. Wendy Portillo, should likely be fired for bullying one of her students. Teachers (as do all of us) make mistakes, but this is one that went way too far over the line and caused harm to a student. Yes we all make mistakes, and there are always consequences of those mistakes. In addition to harming a child, the consequences should probably include loss of a job. But read on, maybe there are more constructive consequences.

I can’t put the entire blame for this tragic situation on Ms. Portillo. Based on the limited amount of information in the few mainstream news stories (which I never completely trust to be fair and balanced), I’ve come to the following conclusions:

• Ms. Portillo was not qualified to teach Alex Barton. I draw this conclusion from Alex’s mother’s statement that he spent much of the time in the principal’s office since arriving at school in January. Ms. Portillo was obviously not able to keep Alex in her classroom I consider this evidence that lacked the skills to appropriately teach Alex
• The district’s placement of Alex Barton in Ms. Portillo’s class does not fit the definition of a “Free and Appropriate Education” mandated by the IDEA laws in the US. It appears the district put Alex in an education setting that did not include the appropriate supports to address his “Individual” needs as required by law. I again base this conclusion on the mother’s statement that Alex spent so much time in the principal’s office. If he school placement was appropriate, he would not be spending time in the principal’s office.
• The school district and parents were working on an IEP, but I suspect that it had not yet been implemented. The school district appears to have been waiting for the entire process to be completed, which can take months, before providing Alex with appropriate supports. I base this conclusion on the article’s references that the IEP was being developed but it never stated that it had been implemented. It also appears that the district took the all too common approach of starting by providing minimal services, with the promise that more services will be added if needed. In my experience, with multiple children on the autism spectrum with behavioral issues, this approach is almost always doomed to fail.
• It appears that Alex had “behavioral issues” but there is no evidence mentioned that he had an appropriate Behavioral Intervention Plan (BIP) or anyone gathering data on the antecedents to these behavioral issues. Again I base this conclusion on the article quoting Alex’s mom as saying there were “disciplinary issues”. Discipline is only one way to address behavioral issues and it is often very ineffective for kids with ASDs. I consider a BIP mandatory in these situations as without one, teachers make it up as they go along. The data collected by observing antecedents to behavioral issues and the success of the BIP should be used to make classroom accommodations and adapt the BIP whenever needed.

Considering the lack of support for Alex, and all the responsibility being placed on Ms. Portillo, it is possible that her frustration with being stranded in a situation for which she was not qualified mounted over time and she became exasperated and eventually stepped over the line and harmed a child. She could have done a lot of other things (and maybe she did) such as calling an emergency PPT, calling a meeting with the principal, escalating the issue to the superintendent or perhaps played another card and escalating to the teacher’s union. All could have lead to different outcomes. Ms. Portillo made her choice.

One part of me wants to see Ms. Potillo fired. Her actions justify it. Another part of me would like to see a different outcome, one that attempts to directly address the issues and set a more positive tone for all involved. One encouraging sign is that Ms. Portillo admits to what she did and I see no indication in the article that she tried to “spin” her admission.

Call me naive (and you’d be right), but I like to tackle problems head on and what I’d like to see is the following as an attempt to fix as much of the damage as possible. This will only work if Ms. Portillo’s actions were an act of desperation and not a reflection of innate meanness:

• The parents and the school find some way to get Alex back into the classroom.
• Someone from outside the school with expertise in explaining autism to children is present when Alex returns.
• Ms. Portillo publicly apologizes to Alex and the rest of the class and dishes out extensive amount of praise on the two students that voted to keep Alex in the class. She also admits that she did not know much about autism but is now learning.
• Ms. Portillo explains her regret in not being able to provide Alex the additional supports that he needs.
• The outside individual with experience in autism explains some of Alex’s differences, and the issues in the classroom, that caused him to behave in certain ways.
• Each student in the classroom is given an opportunity to tell the class about difficulties they’ve experienced in the classroom, as well as what they could do differently to make things less difficult for others, including for Alex. I expect an outside expert could be of great help facilitating this .
• If this goes well, the school system provides an intense amount of support in the classroom for the remaining few weeks of the school year.
• The PPT team identifies an appropriate program and placement for Alex for the fall. It may be a different program but, with the above actions, at least Alex stands a chance of leaving this placement on a positive note. He certainly deserves that. The other students deserve it as well.

The likelihood that the school takes this type of approach is very, very low. They’d have to admit they made mistakes which opens them up even further to getting sued. However, if we focus on the kids, Alex and all his classmates, the opportunity to teach the correct lesson becomes smaller with each passing day. If Alex is placed in a different school program for next year, the opportunity it is completely over when this school year ends.

My new heroes are the two students that went against the tone set by the teacher and voted to keep Alex in the classroom. They recognized the difference between right and wrong and voted for what was right by choosing acceptance and understanding. They stood up to their peers and one of the primary authority figures in their life. Describing them as heroes is an understatement. At the age of 5, they are willing to do what’s right in spite of pressure to do what’s wrong. Their parents, guardians, grandparents or whoever is raising these two children are also my heroes. They have managed to teach important lessons about life to five year olds. That’s an incredible thing.

Many people are contacting the school board to voice there outrage against Ms Portillo, and I hope the district is overwhelmed with phone calls, email, and letters. Perhaps Ms. Portillo should be required to stand before the school board while 14 parents of children with disabilities, and the parents of my two heroes, have the opportunity to tell her what they dislike about her. The parents could then vote on whether or not she gets to keep her job and her teaching license.

I don’t know that I’ll contact the school board. I’m more inclined to contact the town and offer to chip in for a parade to honor the town’s new heroes.

Mike Stanton quotes a touching piece of writing in his blog post on this story. In encourage you to click over and read it. It describes how things should have gone in Ms. Portillo’s classroom.

I’ll close by sharing a story that I’ve written about in draft posts, but I don’t believe I’ve ever posted to this site. After kindergarten was over for SJ, one of the mothers of a student in his class told my wife about one of her teacher conferences. The teacher told her that there was an autistic child in the classroom and that her child had reached out to him more than any other student in the class. As the mother told the story, she choked up and thought “That’s what life is supposed to be about!”. She said she didn’t remember another thing said at the conference because nothing else the teacher had to say was as important as the feedback she had already given. I suspect that the parents of my two new heroes are a lot like this mother.

The theme of blink is that our minds are very effective at coming up with conclusions about the world around us in very short periods of time.  In many cases these conclusions, which are often derived subconsciously, are uncannily accurate.  Other times, our minds are influenced by experiences and prejudices that lead us to come to grossly inaccurate conclusions. 

Mr. Gladwell brings autism into his book when he describes situations in which we quickly form conclusions about people and their intentions.  He briefly presents Simon Baron-Cohen’s term "mind-blind" that describes the inability to read the non-verbal cues of others.  He also presents research and anecdotes from Yale psychologist Ami Klin which support the concept.  This material is all presented in the context of several tragic incidents during which he proposes that police officers became "mind-blind".  He postulates that their "mind-blindness" was caused by extremely high levels of stress due to events such high speed car chases or simple personal prejudices that escalated benign situations into something fatal.  He goes a step further and proposes that these police officers ignored lots of input from their environment because of their intense focus on a particular aspect of the situation.  Their focus narrowed so much that some assumed a suspect pulling out his wallet was pulling out a gun and others became became unable to hear what their fellow officers were saying to them.  Many officers involved in shootings report that they did not even hear the sound of their gun fire, although they knew they fired it and observed the results.  

blink’s coverage of autism is certainly superficial, and I admit to feeling some discomfort, almost offense, as Mr. Gladwell described the police officers in extreme situations as being "temporarily autistic".  I stifled my feeling of offense and continued reading because the first three quarters of the book convinced me that the author had some insightful things to say. I gave him some latitude and looked a little deeper for both his meanings and some fresh perspectives.  Fortunately, I found two views that made continuing worthwhile.

The first is that there is an aspect of "mind-blindness" that goes beyond autism.  All people, at certain times, disregard one form of input from their environment in favor of another. We may ignore people’s expression when we are confident that we know what they are going to say or do (even if we are wrong).  Many married women will attest to their husband’s inability to hear while they are reading the paper or watching TV. Most drivers have had the experience of finding themselves "not remembering" a part of a trip over familiar roads because they were on autopilot and didn’t observe their surroundings on that part of the trip.  We are always choosing to focus on certain aspects of our environment and ignore others.  Mind blindness is just one manifestation of this phenomena.

The second thing that I took away from the Mr. Gladwells writing is that we have the capability to improve our ability to make the quick and accurate  conclusions that he describes.  He presents several situations in which people learn to make more accurate conclusions about everything from recognizing fake pieces of art, to being able to predict the success of a marriage by observing a very short discussion between the couple.  In all the situations, people are able to become better at making accurate conclusions through a very simple technique: practice.  If practice can help a police officer distinguish between fear and aggression in a potential suspect, can practice help an individual learn to read nonverbal communication in others?  Based on the large number of autistic adults that have developed skills in this area, I’d have to say yes.  Reading nonverbal cues in others may require a lot of effort and energy for some autistic individuals, but I’ve met many adults that have shown the ability to develop these skills.  All people, autistic and non-autistic, are lacking in some skills.  Depending on the skill and the individual, improvement may be difficult but there is always the potential for growth.  Mr. Gladwell points out that the obvious way to achieve such growth is simply to practice.

I am a kid with autism and I come up with tips on things. This will make hope for autism. Here are a few places that you can use tips: karate, home, movies, and horseback riding. Here’s one: try your best!!! Here’s #2: stop if you need to. Now, for #3 (in case you play a game): quitters never win, and winners never quit.

The cover headline asks “Is There Hope for Autism?”

Sorry for the language but, it pisses me off that, by even asking the question, the cover implies that the answer might be “No”.

File this under Angry Rant.

The moderator occasionally tosses some of the questions to one of the parents of the younger panelists. I happened to be sitting next to the couple and could hardly contain myself from jumping up and answering. Instead, I waited patiently (ok, not very) while the moderator passed the question to other parent to answer. The mother talked about getting to know the child better and being supportive, gently working her way up to the real answer:

“You need to change your view of communication. It’s not just speaking. There are many ways to communicate and while you are waiting for nephew to speak, you’re missing the ways that he is communicating with you. Find out the ways that he communicates and learn to understand what he is saying, even if he doesn’t speak.”

I could tell the couple was disappointed in the answer. I leaned over and spoke a few words of encouragement. They obviously cared about their nephew and wanted to learn (or they wouldn’t have even been there), but their expectations were off. Hopefully they will continue to learn and grow and adapt to their nephew rather than expecting him to change for them.

The themes in Mr. Kim’s post are very similar to those that many of us write about in relation to autism: acceptance, understanding, and avoiding judgments. He describes, in general terms, that introverts think differently than extroverts (just in case the extroverts reading the post are lacking in Theory of Mind).

Since I first heard the term neurodiversity, I understood that it applies to all of us, not just those on the spectrum. Mr. Kim has shown that he understands about neurodiversity, even if he’s never heard the term.

What is Bullying?

Bullying is not about fighting, it’s about power. For this discussion, I’m defining bullying as using power to intimidate and dominate someone with less power. Special education administrators regularly use their power to get their way, at the expense of the children that they should be serving. I’ve heard enough stories over the past few weeks from my fellow parents to confirm that this bullying goes far beyond a few isolated incidents.

Springtime in Connecticut is PPT time. The season when all special education programs are reviewed. The school year, excluding summer, is 180 days with 6 hours of school a day. A child will spend over 1,000 hours in the educational program. Each spring, the school district will schedule a meeting with parents, devoting an entire 60 minutes to the development and planning of the program for the student for the upcoming year. Yes, a whole hour! Meetings are scheduled back to back to back, and there is little time for discussion and collaboration. If everyone is on same page ahead of time, it works out fine. However if there is any disagreement or complications, there is often a push from the administrator to just ‘get it done’. Get an IEP on paper and move on to the next kid.

My description of the administrators’ behavior as bullying is based on recent stories from parents relating their experiences in this process. The stories come from many school districts and involve many administrators. They come from wealthy districts as wells as those that are not as well off. The stories are told by parents with children just entering the school programs and they are told by parents who have been in the special education system for many years.

How They Bully

The administrators that engage in bullying are never mean, and are rarely loud or unprofessional. The exert their power in more subtle ways.

The most common method of bullying is to not tell parents about services that are readily available in the district. The administrator will tell the parents about the services they want to provide and nothing more, withholding any information that could cause the administrator to lose power. When asked direct questions such as “Can you tell me what services you are currently providing to elementary school age students with autism”, they’ll hide behind “Let’s focus on what’s appropriate for your child and not programs that are designed for students with different needs”. Parents have told me that school districts have never mentioned summer services in the PPT meeting even when children with similar needs are attending summer programs. One parent said they were happy the district was providing a half day summer program for their child, until they found out that other children with similar needs were receiving all day programs.

Another common bullying tactic some administrators use is lying. I’ve heard several stories over the past few weeks of administrators telling outright lies to parents. In one situation, a parent asked a district administrator if their child could receive services over the summer. The administrator told the parent that the child was not eligible because the child is verbal and the summer programs are only for non-verbal students. This district is, in fact, providing services to verbal children over the summer. In another situation, a parent asked if a provider from outside the district could be brought in to provide a specific service. The district administrator told the parent that they don’t ever do that. The parent knew the administrator was lying, as they were networked with other parents and knew of a situation in which the district brought in someone for the exact service they were requesting. An administrator in yet another district told a parent that a child was not eligible for special education because their academic level was adequate (in kindergarten). They ignored the significant emotional and behavioral difficulties the child was having.

School districts also bully parents when they insist on identifying a child’s disability as something narrow such as Speech and Language Delay rather than something broader such as Autism. I know parents in several districts that encountered this problem. It’s a tactic used to control services. A child with a Speech and Language disability would be unlikely receive services from the school psychologist or occupational therapists. However, label a child as autistic, and most educational experts would agree that these services should be part of the child’s program. Some administrators have told parents “the label doesn’t matter” but insist on using the one that is consistent with less services. Others have said “You don’t want your child to go through life with a label of Autism do you?”

There are plenty of other less subtle ways that administrators try to exert power over parents. I know of one administrator who always sits at the head of the table, firmly establishing a position of power. This administrator has made other PPT team members move in order to have the ‘power chair’. I know of an administrator that dominates meetings so completely that they have refused to allow discussion on specific topics. Such discussion could result in consensus around an idea the administrator does not support, resulting a loss of power. The administrator controls the meeting in a way as to not lose power.

I suspect that much of the bullying by the district administrators is targeted at specific groups of parents. You are more likely to bullied the first year your child qualifies for special education, primarily because you are probably not experienced enough to advocate effectively. I believe districts are also more likely to bully lower income parents because they are likely to be less educated about their child’s disability and appropriate programming. Lastly, districts target parents that are not assertive and not strong advocates.

Why Bully?

I don’t believe that most administrators set out to be hostile and mean. The bullying stems, in part, from the expectations placed on them by the districts. They are not rewarded for providing appropriate programs and the progress of children under their supervision. Instead they are rewarded for getting paperwork in on time, coordinating and services without problems, and finding ways to provide services at a low cost. Many are self-motivated to get this done with the least amount of effort, and the least amount of stress (for themselves). For some administrators these motivations are so strong, they don’t mind resorting to a little bullying and lying if it gets the job done.

What to Do About Bullying?

I grew up before the age of political correctness and zero-tolerance for bullying. I personally learned that the best way to handle bullying is to stand up to it. Provided you were strong enough to do it, or had friends that would back you up, this usually ended the bullying, permanently.

We parents need to do the same and stand up to the bullying. We must be strong enough to stand up to it and when needed, connect with other parents to make us stronger. I could write an entire post about the ways we can stand up to it for the benefit of our kids. Instead, I’ll offer a short list of suggestions to consider if you’re being bullied:

• Invite another parent or an advocate to the PPT meeting (it’s within your rights).
• Find out what other services are being offered to other students.
• Research special education complaints and resolutions at the state level (in the US at least).
• Go to an advocacy class,
• Attend a PPT meeting for another child to help another parent and learn something yourself.
• Attend meetings with families outside of your school district.
• Read up on IEP law.
• Learn what the procedures are for filing a complaint.
• Take detailed notes about everything (it helps to catch lying).

I seem to be making a habit of quoting lyrics from songs in my posts. Today, I’ll close with some wise words from the late Bob Marley:

Get up, stand up: stand up for your rights!
Get up, stand up: dont give up the fight!

While I’m always glad to see autism get more attention, I’m disappointed when the media gives poor coverage. Even Oprah’s recent one hour show covering autism was, in my view, superficial. Fortunately there are other media outlets that are stepping up.

First, and briefly, Oprah’s coverage did not do much to raise awareness other than reaching a very wide audience. Oprah’s show may appear to be an hour, but commercials take it down to about 42 minutes. Subtract the ‘fades’ into and out of commercials, the passes between speakers, introductions and credits, and there’s probably less than 30 minutes of time left to actually talk about autism. Additionally, most of the guests participated in the Autism Every Day video last year. More diversity is needed in efforts to raise awareness.

Step in WNPR – Connecticut Public Radio. While Oprah was presenting information many had already seen a year earlier, the Connecticut NPR stations took a different approach. Over a two day period, WNPR dedicated two 1 hour episodes of the show Where We Live to focus on autism and what’s happening in Connecticut. Fortunately, on NPR an ‘hour’ means about 50 minutes rather than 30. Additionally, the producers sought out some wonderful Connecticut residents to tell the story. The story told was far more engaging than Oprah and I suspect it would be so even for those that don’t live in Connecticut.

Where We Live sought out 4 people, and one “special guest” to tell the story. The first episode was the more traditional ‘awareness raising’ approach. The guests were Dr. Ami Klin of the Yale Child Study Center and Dr. Marianne Barton of the University of Connecticut Both are doing internationally known work in the autism field. Dr. Klin presents a very holistic view of autism, and ties it in with a lot of the research that is currently being conducted. Dr. Klin’s reference to the breadth of the spectrum by describing it as “many autisms” resonated in it’s honesty about how difficult it is to ‘define’ autism. Dr. Barton has been working to improve early identification and is one of the developers of the Modified ChildHood Autism Testing Scale (M-CHAT) based on Simon Baron-Cohen’s original tool. Dr. Barton and others have been tracking the effectiveness of the M-CHAT over a period of years. While the studies are not complete, the tool has become one of the primary methods for autism screening for toddlers in the US.

The second episode included guests that have had a more direct impact on the lives of many autistic people and families in Connecticut. They are also all people that I have the honor of knowing personally. Ms. Stacey Hultgren is the Co-Director of the Connecticut Autism Spectrum Resource Center (CT-ASRC). The ASRC grew from a local parent support group into an organization that serves the entire state. Ms. Hultgren and her organization put an extensive amount of work into building a repository of information on services to support autistic people in CT. The final product, The Autism Spectrum Resource Guide is a 400 page volume covering almost every aspect of services available in the state. CT-ASRC facilitiates parent support groups, groups for autistic adults, and an advocacy course series that I wish I could find time to attend. Interestingly, Ms. Hultgren and the ASRC have accomplished all of this without affiliation with any national organizations.

Ms. Donna Swanson, was the second guest on the final episode. Ms. Swanson runs the Focus Alternative Learning Center, a mileu program for older children and teens on the spectrum. The Focus program is based on teaching skills in a ‘natural’ home-like setting rather than in an artificial setting such as a social skills group. Many of the staff members are young adults that were formerly participants in the program. MJ has been participating in the program for almost two years. Focus presents an advocacy panel discussion called “The Spectrum Unplugged” in which a group of teens and young adults present their experiences to an audience in various settings. The panel has been incredibly popular in the state and has been presenting about one or two times a month for almost two years throughout Connecticut. The Spectrum Unplugged deserves a post of it’s own one of these days.

The special guest on the final episode was Mr. Lucas Hoffstatter. I expect that he’ll be embarrassed that I refer to him as “Mr.” but he deserves the respect of a title as much as anyone else that I’m writing about in this post. Mr. Hoffstatter is a young adult with Aspergers, a former participant in the Focus program, and currently a Focus staff member. As team leader of the Spectrum Unplugged, he does a wonderful job of articulating both his own challenges and successes. Each time I see him speak publicly, I’m impressed by the mix of personal qualities that Mr. Hoffstatter presents. Each time this mix of qualities leaves one word resonating with me: leadership. I’m grateful that MJ has him as a mentor, even if MJ hasn’t yet figured out what a mentor really is.

I’m also grateful to WNPR to raising awareness in a way that Oprah could not. Each of the people who participated have accomplished far more than I could describe in a paragraph. These are the people that are doing far more than simply ‘raising awareness’. They are making a difference.

The links to the shows in the post above are to the WNPR archives where you can hear the shows in their entirety.