A view of autism from along the spectrum

We took the family to Washington DC for a few days last week. Our hotel happened to be across the street from the US Department of Education (DOE). Considering all the work that we (and our sons’ PPT members) put into education, I was very pleased to see such obvious signs that the DOE is doing their part to help all of our children.

Their efforts can be seen in the pictures below. They have spent both the time and money to erect two little red schoolhouses at the four entrances to the DOE building. They even had the inspired vision to write No Child Left Behind on a fake blackboard over each entrance. Yes, that’s eight little red school houses, all helping to improve education for our children.

I feel so much better now.

Bullying is alive and well in our school districts but the nature of the bullying has changed. The administrators have
turned the tables. While they have instituted ‘zero-tolerance’ policies regarding bullying of students, they have institutionalized another type of bullying. Many administrators have become the bullies and their targets are parents of children in special education.

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!

It’s been a long break from blogging for me. There’s no big reason behind it, just a lot of little ones. Here’s a sample of my rambling thoughts from the past few weeks. Next, it’s time for me to catch up on my reading.

• When did our idea of the perfect educational setting become 20 students, all of the same age, placed in a room with one adult with a four year college degree? OK, so we vary the number of students and some teachers have advanced degrees. Still, it’s a pretty narrow model considering the diversity of learning styles people have. Why is this model considered ‘mainstream’?
• I hate the word ‘retard’. I mean, I really, really hate the word.
• There are not nearly enough child psychiatrists in central Connecticut. I expect other areas have the same problem. I can’t believe how often my wife and I hear of families that can’t find any child psychiatrists taking new patients.
• I built a PC for the first time last month. My 11 year old has wanted to build one for a long time. For his benefit, we bought a case with a see-thru side panel and blue LED lights for the inside. He loves making things and if it has lights, all the better. I can also now say that my kids use Linux.
• I want to figure out how to balance privacy with writing about my kids. Maybe nicknames would help. I’m getting tired of writing “my 11 year old” or “my 7 year old”. It sounds so cold.
• Anyone who says razing children with autism is a nightmare has never parented a neurotypical teenager. OK, it wasn’t a nightmare, but there were days when it felt like it. Fortunately, we all keep growing. As of last weekend, I am officially no longer the parent of a teenager. I am now the proud father of a mature and responsible 20 year old. It feels really good.
• In know one particular special education administrator who avoids taking responsibility for doing anything they don’t want to do. The only way to get something done is to put every request in writing. Without it, I can expect little but excuses. I get so tired of writing letters.
• For years, my wife and I have been taking the boys out for breakfast on Saturday mornings. We have a lot of reasons for doing this, one of which is that the local diner is a great place to practice social skills like eating politely, using inside voices and speaking clearly when ordering. My youngest doesn’t always speak clearly and will look at everything except the waitress when he orders. After observing this yesterday, I coached him to aim his voice at the waitress and I demonstrated by moving my hands back and forth between my mouth and the place where the waitress stands. I fully expect that next week when he orders, he will move his hands back and forth between his mouth and the waitress. He’ll probably still be facing somewhere else when he says “French Toast!”
• I received a brochure in the mail for an upcoming autism seminar. Instead of focusing on treating autism, the seminar is about the attitudes and beliefs of the people providing support. I have never come across a seminar with this type of focus. I’m glad to see the dialogue on autism become broad enough to support a seminar like this.
• There’s a lot of ’stuff’ on the internet vying for my attention: Email, RSS, Bogs, News sites, forums. I find it tough to filter it out. That’s one of the reasons for the long blogging break
• There are far too many issues with school transportation. I am stunned at the things that slip through the system. On the first day of school this year, two buses showed up to pick up my youngest and his classmates. We got a call from the van driver picking up my middle son. He asked to adjust pickup times and locations for several days. He called again at the end of the day and asked if we would meet him a mile away from the house because he was running late! Last year, my youngest was not dropped off at his correct bus stop for the first three days. We discussed all transportation arrangements at the PPT but when the bus showed up at the end of the first day and he wasn’t on it, the bus driver said he knew nothing about it, and didn’t know where my son was. The driver didn’t seem to care either. My son got off with a classmate a stop earlier. Yes, we panicked and almost went back to ’special’ transportation. Ugh!! There are too many people involved: the school, special educators, the district transportation staff, the busing company, the bus drivers. No one acts like they are responsible.
• It’s time to finish some of the posts that I have percolating.
• The leaves are changing colors in New England and we saw the first wave of ‘leaf peepers’ come through this weekend. I just love the change of seasons.

My wife and I place high expectations on our school district. However, we are also pragmatic and know that there are many things competing for the attention of teachers and administrators. We recognize that, in some situations, it’s faster and easier to accomplish things on our own than trying to work the system. Providing information on autism for mainstream teachers is one of those situations.

One of our boys has been mainstreamed since kindergarten. He starts third grade next week, which means his fourth teacher in four years. He’s also on his second full time para. Right or wrong, we don’t expect that every mainstream teacher knows as much about autism as we’d like. My son’s teachers receive a lot of support from special educators, school psycologists, etc, but we want them to know the basics of autism on their own.

The same goes for his paraprofessional (or ‘aide’). Paras’ experience vary greatly and, in general, the school district does not do much to prepare them. When my son got a new para a year or so ago, she admittedly knew very little about autism. She had supervision and support, but was certainly willing to learn more on her own.

We gave two different resources to teachers and aides recently. We may ‘lend’ the materials but if the teacher or para wants to keep it, we’ll happily go buy another.

The first is a publication developed jointly by the ASA and the NEA (and other professional organizations) called The Puzzle of Autism. I hate the title but I think it is a wonderful overview of autism for an educator. It’s only 44 pages total and about 25 pages are content on autism. I can’t imagine any teacher not wanting to take the time to read it. Copies of the guide have been made availalbe from the NEA, and while they are currently out of stock, you can download the document and print it.

The second resource is a book titled How To Be A Para Pro : A Comprehensive Training Manual For Paraprofessionals. Although not clear from the title, the book is written for paras and teachers of students with an ASD. The first part of the book presents an overview of ASDs and the second part focuses on how paras can provide appropriate supports. One of the co-writers, Diane Twachtman-Cullen, has authored several books on autism.

Again, it would be great if the school provided these resources, but I don’t mind investing an extra $20 or so each year in the kids education. Providing it ourselves is also a good way to start a dialogue with the teacher.

I do my best to present a positive and constructive outlook. For those times when I lack the emotional energy to do so, I try hard to avoid being negative. I don’t like listening to complaining, whining, and unfair criticism, so it’s only fair that I avoid doing this myself. Being negative is usually a last resort.

I chose to ‘go negative’ in a recent interaction with the local school district. Our Director of Special Education is retiring this summer and we expect that the favored candidate is a particular employee already in the school system. My wife and I believe (very strongly) that this individual does not have the skills needed to successfully interact with parents of children in special education. Considering that the Special Education Director is generally the last person able to prevent a disagreement with parents from moving to the legal system, I consider those ‘people skills’ very important.

Unfortunately, it’s very hard to present evidence to the personnel department and the school board to support such a position about ’soft skills’ like getting along with others. There’s no way to get this across to someone without being negative, even if you can back it up with lots of examples.

The retirement of our director caught us somewhat by surprise. We’ve been paying more attention to the kids than we have to finding and reading the minutes from the school board meetings. The hiring process started before we even knew the current director was leaving. There was no time to engage other parents to join together in advocating, although we knew a lot that felt the same way. Instead, we briefly spoke at a school board meeting indicating what type of skills we believed were necessary for the role and fired off a quick, and very negative, letter to the superintendent, personnel director and the school board indicating why we felt this potential candidate would not be good for the district.

With more time, and perhaps more savvy people skills on our part, we could have spoken to each school board member personally. We could have established a polite relationship that would help balance the negative message that we had to deliver. We could have worked behind the scenes and potentially had more of an impact than 3 minutes at a school board meeting allowed. Mabye this could have developed into a little more influence in current and future matters that the school board faces concerning special education. All of these things needed more time.

We made a choice. The dozens of hours required to take a softer approach were better spent on our kids and our jobs. I decided to spend only a single hour writing a letter describing our view of this individual’s past job performance, even if it’s looks like I’m a complainer and a trouble maker.

Ultimately I realized that the ability to ‘go negative’ is just one of many tools that we need to use to advocate for our kids. I prefer to keep this particular tool in the toolbox, and use others to do most of my advocating. But I’m not afraid to take it out and use it.

I love finding things that have a meaning or an impact that go far beyond immediate appearances. I found one this morning.

Today was Day 5 of my son’s new school program and I drove him for a before school activity, staying until it was over to make sure it went OK. I walked with him to his classroom afterwards and was somewhat surprised when we failed to make a turn toward Room 2. I then learned that he starts each day in his mainstream classroom. This was the first time in several years that he hasn’t started and ended the day in a self contained classroom, even when he was mainstreamed for all his classes.

My first thought was: This isn’t right! Mornings are hectic. What if something goes wrong? Where’s his aide? I shoved the ideas aside and checked in with his teacher. I then met his new aide and chatted about the events of the previous day. All the while, I was stealthily observing how the morning routine was going. As children finished gathering, I said goodbye and walked away.

Before I even reached to door to leave the school, my sense of concern about the changes in starting the day had been replaced. I realized that the change eliminated the extra transition (from the self-contained to the mainstream classroom) each morning. He’ll have much more time to get comfortable in his space each day. He’ll only have to settle into his surroundings once.

I followed this train of thought a little further. I realized that by starting the day in the mainstream classroom my son might get the subtle message that he belongs there, all day! It’s a different message than the one we’ve been sending for a few years. A little bit of success may lead to increased confidence in his own ability to handle starting the day in the same way as other students. Learning to deal with this before middle school would be wonderful.

I’ll readily admit that these changes may be completely trivial and simply result of the different logistics of different programs in different buildings. I’ll take them anyway as the risks are low and the upside is high. I’ve learned it takes lots of little changes to find what works and that’s there’s something positive to be found in most changes.

This isn’t a post about constructing barriers. Instead, it’s about the constraints that the physical walls of the school buildings place on our children’s educational programs.

The change in placement that my son is going through includes a move to a new school. He needs to leave behind a lot of relationships and start over with both staff and peers. He will also need to change schools again next fall as he moves to middle school. By the time he starts sixth grade, he’ll have changed schools 5 times since kindergarten. A typical child will make only one change during this time.

Our school district is fairly large and a lot of resources are available. However, at the elementary school level, the staff with the strongest skills and experience with autism are concentrated in a single school (out of a 10 elementary schools). We’ve been able to tap into the district resources on a consulting basis, but it’s now necessary to move the child to where the adults are.

I’d love to see more outreach from this cluster of expertise into the other schools. I know other parents who have children on the spectrum and their children’s programs are limited based on the experience of the school team. It seems like such a waste to see staff struggle with how to put a program in place for a child and know that there are experienced resources just a few miles away that could help.

I know this issue is not unique to our district and that most districts also focus their autism resources into a single school. There are many benefits to this arrangement but it’s also time for districts to get a little more creative. The districts need to provide more effective programs for children throughout the school system.

In my line of work, we use a lot of very common technical tools to build teams that cross very large geographic barriers. We also hop in our car and drive when we need to work with people locally. I know the school systems are also capable of implementing district wide programs when it is necessary. It’s time to do so.

We have too many tools, too many experienced people, and too many children with autism to let something as minor as the walls of the school building stop us from reaching out.

Some really great things happened as we dealt with the breakdown in my son’s placement.  After my wife took him home from school last week, following a morning in which things went very poorly, I told some of the staff that we agreed that it was time to make the change.  A lot of discussion ensued and a staff member asked if I thought my son ‘needed closure’.  We agreed that it was important for him to leave on a positive note rather than having the last few weeks overshadow the two and one half years in the program.  I envisioned closure to mean a chance to quietly say goodbye to his teacher, his aide, a few peers, and the staff that has supported him.  The school team had other ideas. 

Earlier this week, my wife brought him back to school at the end day.  His mainstream and special ed class had all gathered for a going away party.  Good Luck posters were splashed on the computer screens in the classroom.  Teachers brought in cupcakes and cookies.  The students had made a large number of cards wishing him well.  Most were covered with pictures of his ’special interests’ that they all knew very well.  One student even sang a song.  The principal and support staff were there along with his mainstream teachers from the two prior years.  He exchanged phone numbers with a few classmates before leaving.

A week ago, he wanted nothing to do with a new school and acted as if he might be able to prevent the change from occurring.  The night of the going away party he told me he was sad to be leaving his classmates.  He’s also expressed both anxiety and excitement about his new school.  In other words, within a week, his reaction has evolved into a set of very appropriate emotional responses.  I’d even call them typical.  I’d even call his recognition of his feelings as mature.  He still has some emotional baggage about having to make a change, but to me it looks like the change in placement is already showing benefits.

We’re incredibly grateful to the staff for such a wonderful sendoff. If you’re reading: Thanks Again!

I gained enough material for blogging this week to last at least a month. This week one of the boys’ school placements fell apart and came to an end. It collapsed in dramatic fashion, with lots of trips to school, lots of emotion, and more than a little heartbreak.

The drama was intensified by the effort the entire team put forth trying to hold the program together for him. There have been so many positive moments, so many signs of growth, that we all probably held on too long. The warnings were there for a while, and everyone kept making adjustments up until the end. While we all did this with the best of intentions, it put my son in the difficult place of having to work that much harder to let us know that it wasn’t working.

Watching the emotional struggle that he went through the past few weeks was the heartbreaking part. He struggled with a program that was very familiar to him, and he struggled again when he knew it was time for a change. We know it will work out, but there’s no shortcut to working through the challenges that come with the change. We will work with the school to minimize the impact but we can’t eliminate the change. We tried to avoid it for the past few weeks and we know it didn’t work.

It’s only been about 36 hours, but we’re starting to move forward. We all expect him to flourish in his new placement and will meet next week to formalize it. His resistance to the change is melting away, and signs of enthusiasm are beginning to show.

There’s no cause here for placing blame. I hold high expectations for the school district. I let them know when I think they fall short of those expectations and give credit and thanks when they meet them. I recognize that educational placement for kids on the spectrum is complex. There’s no magic formula to determine what placement will work for each child, how long it will work, and how we’ll know it exactly when it’s time to change. I know I can live with the ambiguity. However, none of this knowledge reduces the heartbreak that comes from seeing my son struggle.

Call me rigid and inflexible, but I think all children on the Autism Spectrum should be identified as autistic in their educational plans. Additionally every teacher involved with the student should know that they are autistic.

Parents and professionals have told me stories of administrators wanting to use other identifications in the educational plans of a children with ASDs. These other identifications include speech impariment, ADD-HD, emotionally disturbed, or just about anything but autism. Parents and professionals heard a variety of reasons including:

• “You don’t want to label your child for life, do you?”
• “The label is not important. In this school district we focus on the individual needs of the child, regardless of the label”
• “Since your child’s speech has improved, he no longer qualifies for special education because of speech delays. We need to change the identification on the IEP. How about ADD-HD?”
• “He doesn’t look autistic”
• “Autism is just a fad”
• “If we label the child as autistic, the parents will want an ABA program”

Administrators made all of the above statements regarding children who were previously diagnosed with an ASD. While these statements outrage me on so many levels, for now I’ll focus on only one: They hinder the disclosure of the student’s autism to school staff.

The US Federal Government sponsored a publication several years ago with guidelines for educating students with autism. One of the guidelines was that students with any ASD should qualify for special education under the category of autism. The state in which I live recently published guidelines as well. Guess what? They said the same thing.

I’m going to give the administrators the benefit of the doubt and assume that they are not trying to withhold services (play along for a moment) or otherwise harm the child. Regardless of the reason, the effect of identifying an autistic child with a different disability is that it hinders disclosure, particularly for those students educated in the mainstream setting.

This leads to the obvious queston. How can teachers effectively educate a student with autism if they don’t know the child is autistic?