Friday, June 17, 2011

Bullying And Autism

I've posted three of the sessions I attended from Autism One. I fully intend to post all the sessions I viewed, though it is taking me awhile. The interesting thing to me is how many of these are applicable not just to people affected by autism but by anyone - interestingly, frequently for both children and adults. One topic near and dear to my heart was "Bullying And Autism" with Leslie Phillips.

Mister Man is high functioning. He attends a private school with no supports in school. Yet he has social deficits, and I can look at him and see how he can easily have a huge target on his back. If someone is looking to bully - and thank goodness it isn't tolerated at all in his school and isn't an issue - he's one they'll choose because of how he reacts. As we look to moving him to public school at some point, ensuring he doesn't have issues with bullying is very much at the front of my mind.

The session with Leslie Phillips focused on both helping to prevent bullying and also steps to take if bullying becomes an issue. There are some great steps she suggested for any parent, whether with a neurotypical child or not.

First up comes the definition. Bulling is a behavior that is unwanted, negative actions. It’s characterized by an imbalance of power. "It may be a subtle one where there is an exchange where the person who is more powerful changes. One of the parties feels unable to defend him or herself – he may try but in the end doesn’t feel able to do so," Leslie explained. I found it interesting to remember that the person who is more powerful and does the bullying may change, even between the same people.

How do you help yourself as a parent? The first step, she shares, is to "familiarize yourself with the code of conduct for your school. You need to know what is considered bullying and what isn't. You need to know the consequences of the actions and what the process for discipline involves."

Leslie also reminded us that bullying is so much more than it was when we were growing up where someone would knock a child down to steal the lunch money. "Bullying can be manipulative where a child is coerced or controlled. It may be a conditional friendship where the friendship is alternated with bullying behavior – you'll see it a lot in the neighborhood where kids will play but then at school ostracizes the child because they don’t want to align with that child in school because the child sticks out. Exploitative features of the child’s condition are also used via texting and other media." And that's just the start.

There are many types of bullying. "Verbal bullying including derogatory comments, name-calling and taunting. There is bullying through social exclusion or isolation, as well as the more familiar physical bullying such as hitting, kicking, shoving and spitting. You can have bullying through lies and false rumors and through having money or other things taken or damaged by students who bully. There are kids who are being threatened or being forced to do things by students who bully them. And of course, there's racial bullying, sexual bullying, and cyber bullying – via cell phone or the Internet," Leslie details. That's a lot to keep track of, both as a parent trying to protect our children from being bullied and ensuring that our children don't bully others.

Interestingly, "students who bully tend to do so during unsupervised time – lunchtime, in the bathroom, on the bus, and the like. Adults can set the stage for bullying by how they act as well – when they are aggressive, it models that for children," Leslie explains. And really, that makes a lot of sense. It's opportunity and taking what they see adults doing and stretching it just a little more.

The scary statistic Leslie shared is that children with autism are at increased risk for bullying. Sixty percent of students with disabilities reported being bullied, compared to 25% of the general student population (British Journal of Learning Support). Eighty-eight percent of children were autism were reported by parents to have been the victim of bullying (MA Advocacy for Children). In general, bullying is most common in grades 6-8 (JAMA). Sixty-five percent of parents reported that children with Aspergers have been bullied: 1 time 11.7%, 2-5 days 9.3%, 2-4 weeks 11.4%, etc
(Study: Walk a Mile in My Shoes). Wow. Those statistics are really scary.

One thing for us to understand is why our kids are targets. Her explanation is that "the most important issue tends to be the poor self-regulation issue and low frustration tolerance. It’s great fun for the bullies to push the buttons of children and watch the reactions. They purposefully and cleverly push the buttons when adults are not watching to get their friends. It’s not hard to find what those buttons are. That the case more than bullying for delayed motor skills or language skills, etc."

"We think primarily of the bullying involving just the bully and the victim. It’s also the bystanders who watch it, the teachers and other professionals who set the environment," Leslie states. And getting past the bystander issue is key. I know it's something that Mister Man's school focuses heavily on. To solve the problem, "the closer you get to the student with strategies the greater the likelihood to help. One group that’s really been identified as critical to helping bullying are the bystanders – those who egg them on, laugh and sometimes participate."

As parents, our children don't always tell us everything that is going on with them for a variety of reasons. A friend's son was being slapped across the face daily on the bus for three weeks, and he never admitted it to her - and yes, he's a completely neurotypical child. He was ashamed of it. He didn't know what would happen. He didn't want further retaliation if he told, etc. If our children won't tell us, How can we tell if someone is being bullied? Leslie shares several red flags. If we see a sudden reluctance to attend school, if the behavior becomes more sensitive, we see cuts/bruises (my friend saw red marks on her son's face but he refused to talk about it), or there are suddenly lowered grades, etc. those are all red flags. Children who are being bullied "tend to have anger, depression, greater incidence of illness, suicidal thoughts and feelings, anxious avoidance of settings in which bullying may occur."

Leslie reminded us that it isn't just the immediate impacts of bullying that we need to be concerned with. "Some long term effects include reduced occupational opportunities, lingering feelings of anger and bitterness, desire for revenge, difficulty trusting people, interpersonal difficulties including fear and avoidance of new social situations, increased tendency to be a loner, perception of self as easy to victimize, overly sensitive and thin-skinned, and self esteem problems. Bullied children are twice as likely to have psychotic symptoms in adolescence, regardless of other risk factors such as mental illness, family circumstance, or the chld’s IQ. The risk of psychotic symptoms was stronger when the childhood bullying was chronic or severe. The serotonin transporter genetic variant appears to increase the risk for developing anxiety problems, as well." Yikes. For this and more, I'm determined to do what I can to ensure Mister Man is never bullied.

What can do we? According to Leslie, "Some of the literature talks about social emotional learning, which assists children in developing fundamental skills to effectively handle school relationships and personal development. This is not meant to be a one off program that you pull off the shelf. It’s something that needs to be pervasive throughout the school and really create a change in the culture overall. It isn’t enough to talk about character traits in the morning announcement." As an aside, social emotional learning is something that our public school system requires, and Illinois is in the process of doing so, as well. That said, it isn't nearly as expansive as Leslie is sharing it needs to be, and her logic makes sense.

She does explain that "Illinois is putting together a requirement and classes that are more of a class on social emotional learning that is like an moral judgement type class. There are things where you create goals like predicting people’s attitudes and behaviors in various situations, etc." Illinois - and my school district - isn't there right now though. "These are things that used to happen more in the home, but today we need to teach them across domains, and it needs to be more than a one off, quick lesson." And this is a reminder that I - and others - need to focus on reinforcing it and teaching it at home, too.

What doesn’t work? “What Works, What Doesn’t Work in Bullying Prevention Strategies” by Michael B Greene is great paper to read, according to Leslie. She also brought up other strategies that have not proven successful from individual counseling to accepting bullying as normal. You can't focus only on physical aggression, zero tolerance policies, isolated efforts (such as special auditorium events, lectures), stigmatizing victims, or situations where adults model intimidation, anger or power.

Interestingly, "counseling of the bully really doesn’t seem to do it. Many of the bullies don’t see what they have done as wrong. In addition, they’re getting a lot of positive reinforcement from their peers on the playground who cheer them on, etc. That is a better reinforce than the other methods," Leslie explain, much to my dismay. "Schools also need to be able to use some judgement with regards to zero tolerance – there are extenuating circumstances and stories behind the events, especially for children who have limited understanding or an inability to control their reactions. Stigmatizing victims doesn’t work – you act like a victim, so this is just going to happen to you, and it will continue to do so."

On a more positive note, Leslie shared what does work. The key is really in school climate change. "The good news is that it works really well. The tough news is that it is tough to achieve, and it’s a long term goal. Children need safe ways to report bulling, both that they witness and are recipients of – use safety net programs where they can anonymously report bullying problems so they don’t have to say it in front of their friends and peers and be singled out as the peer who ratted."

Schools also need to "focus on all types of bullying, especially focusing on the role of bystanders and figuring out how we can get other children who are generally god kids and know that it’s wrong and encourage them to get involved and stand up for kids who are getting victimized," Leslie explained.
Peer support networks, active parent involvement, and positive adult modeling are also keys to stopping bullying.

For those who have special needs children, Leslie suggests that we "prepare the team – set up email list of all the teachers that will deal with your child (music, art, gym, etc). You want it to be a collaborative effort where they are paying attention to what’s happening to the child in school, whether it is an IEP issue or bullying. Make sure you address bullying issues on the IEP. You also want to prepare your child for it, especially as you are moving into middle school, but bulling comes earlier than that, too. Be sure you are monitoring the situation so that when things are going wrong, you know how to use the complaint process."

How do we prepare the team? "Talk to administrators and school board about features of autism and the problem of bullying. What is our district’s Social Emotional Learning (SEL)? If we don’t have one, why not? What strategies are we using to halt bullying, and what’s the data part to support it? Communicate with teachers about your child’s strengths and challenges by making a student introductory portfolio. Texas Project First (website) has a good section on how to write this."

Leslie further explains the concept of a student portfolio. "It introduces your child to the team and is like a resume for your child. Include your long term vision for your child, what your child is like, what your child loves, what the things that are hard for your child - all the things that are important to know about your child. So many teachers see nothing but a white stack of papers with IEP goals and the like about our students, but you can make it colorful and with pictures. They should be able to read a good portfolio in no more than 10-15 minutes. Make it personal and get them invested in your child’s success."

It's important to remember that the bullying is frequently happening outside the classroom, and that we need to keep the whole team involved. "You need to include ancillary personnel like the lunchroom monitors and paraprofessionals. The bullying is most likely to occur during those unstructured times where they’ve got less supervision and focus on a specific task," Leslie reminded.

Another great strategy was to "talk to peers with friends in your child’s grade level, and be a bit of a detective to see if their child might be someone who might support your child who would be able to come back with what’s going on with your child. If they see them sitting alone at lunch or got bothered by X, they can be a support. Ask how they would react in the various situations and see if they can support your child in those situations and not stand by." I love that strategy, as it just takes one really good friend to make a huge difference in the lives of children.

When you're communicating, Leslie warns that we need to "be respectful, but make it clear to teachers, counselors, and administrators that you will be involved in helping the team avoid issues. Bullying is always wrong and needs to be reported."

She also suggests that we involve the IEP significantly in this by creating social skills goals. You want to include "self advocacy skills and social skills goals in the IEP. Focus on writing a familiarization plan (visit the school, introduce him to teachers, walk through the schedule) into the IEP to ensure it happens. When there are so many changes for a student (like moving to middle school), write in the IEP the year before that this needs to happen. Ask for a locker that is on the top, that is near the end of a row, or that is near a paraprofessional’s station. You want the least invasive solution possible."

As a win/win/win solution, "identify a friend who will walk with a peer from class to class – this is much better than walking with a paraprofessional in terms of stigmatization. Make sure there is a friend who walks the child from lunch to PE to recess, as it makes a huge difference in whether the child is victimized. If your child doesn’t have a friend (request that this friend be in the classes with your child), write a peer support request into the IEP – have the school find a willing child, as there are so many “nice” kids who are more than willing to do this. Schools tend to be reluctant to involve other children, but this is a natural support and it is far less costly than paying for a para – and this is a great argument in your IEP meeting. Schools can’t just let it be a failure because they can’t pay for it."

One area I hadn't though about but that is definitely critical is in PE. "If there is no adult supervision in the locker rooms, especially, have them dress outside the setting or ask for an alternate PE like during the summer. This is a huge area of concern," Leslie explains.

Another key is simply preparing your child. "Even if your child doesn’t seem to understand, explain to them what real friendship is. Friends aren’t kind to you one day and not the next, they don’t borrow your lunch money one day and then never pays you back, they don’t call you names and then laugh and say just kidding. That way they can give you feedback on whether they are seeing things that are like bullying. You can do this without overly scaring them."

Leslie also suggests that parents "color code notebooks and folders by subject to allay anxiety, which will help them feel more comfortable. When they are more comfortable, they will stand out less. Anything you can do to reduce anxiety – meet the teachers, security guards, front office personnel, counselors, etc. You want to visit the school and get organized for school. Ask your child if there are any specific fears, and make sure they understand that it is the bully who has the problem and that there isn’t anything wrong with them."

As parents, there are things we can do more directly that we may not think of as helping to stop bullying. Leslie recommends that we "be at the school for other reasons – volunteer for things that bring you into contact with your student (and most classes needs this). Ask questions like: Do your friends have special names for you, who do you sit with at lunch which friends do you talk to during the day, what’s your least favorite class and why. This will help give you clues because often the kids don’t know what’s wrong or that there is a problem If there is a student who might be aware of how things are going for your child, ask them questions - whether your child is verbal or non-verbal. Talk to the parent of that child or ask permission to talk to the child to see if they see anything about your child being victimized – especially if you are seeing any of those signs mentioned above."

The key with your child is to "keep the lines of communication open. Let the school know if there are any issues that you are seeing. As a side note, anything you say to school personnel needs to be in writing; document everything. If you say something verbally, follow up with an email and confirm so that you have the paper trail. Emphasize that they cannot make educational progress on IEP goals due to bullying when they are constantly in fear. Children with disabilities are a protected class – bullying children with disabilities is defined as harassment and can carry harsher penalties. At the same time, don’t become overly emotional, which will backfire, but be persistent. File a complaint if necessary, and know your procedural requirements, which you should get every year. As a last resort, if it becomes necessary to file suit against your district, be aware that you will need to prove deliberate indifference on their part."

It isn't all our children who are bullied - whether autistic or not. "Sometimes it is the autistic child (or previous victim) who becomes the bully. It’s the kick the dog syndrome – they look for someone who is weaker than them to feel some sort of sense of power or control. When they reach 10 years old, they are starting to enter the juvenile system when there are problems. Particularly for kids who are vulnerable to outbursts, know that you have to act quickly and get involved. You need to get disciplinary reports that are going into your child’s file and contest them if you think they are inaccurate."

If there is a problem, Leslie suggests steps to help your child. "There should be a behavior intervention plan in place that follows a logical sequence of events that begins with avoiding the situation – eliminating triggers where possible. As for a functional behavior analysis if you are starting to see problems. If your school calls for a Manifestation Determination – when a child is in fairly serious trouble and they are looking to see if the problem is related to the disability or not – this is the time to hire an advocate, most likely. When you get to this point, things are usually fairly serious. It may be an attempt to move your child to an alternative placement, and they are generally dropped into a population of students who have a label of emotional disturbance which is not a good mix, as they have very different needs."

"If they are the bully, make sure you talk to them about what bullying looks like and that your child understands what assault means. It may be so little as saying you’re going to punch their lights out and the other person feels a real threat, elbowing someone in the lunch line, throwing an object, any act perceived as a threat can result in juvenile detention. Go over the student conduct code with them," Leslie suggests.

And then we get to the scarier part, one that I hope no parent ever reaches. Once there is an incident that brings broader intervention. Leslie states, "Instruct your child that if they are ever questioned by police, ensure that the parent is present. Make sure they know to ask this. They are frequently intimidated and think that they have to say everything or say things that are misleading that they don’t fully understand. This is for both campus police and local law enforcement. Unless they are placed in police custody, they should be free to leave but most don’t understand this and may be intimidated into saying something wrong. They don’t have to Miranda-ize children, especially if they aren’t arrested. If the children refuse to speak, they may be arrested, but this may be better than saying something incriminating that they may not fully understand."

The biggest fear if bullying isn't contained is suicide. Leslie warns that you really need to be on the lookout for symptoms. These include "threatening to hurt of kill themselves or talking about wanting to, looking for ways to kill oneself by seeking access to means, talking or writing about death, feeling trapped or like there is no way out, feeling hopeless, withdrawing from friends family and society, feeling anxious, agitated, or unable to sleep OR sleeping all the time, experiencing dramatic mood changing, seeing no reason for living or having no sense of purpose in life. Many also express this through talking about or writing about death, dying or suicide when these actions are out of the ordinary for that person."

The biggest challenge is that "bullying is something that so many teachers and adults see as what it was when they were children – the bully on the playground who stole the lunch money. It is so much more than that now, and you need to work patiently with your school and district to help them understand and ensure that they’re putting your child in the best possible situation," Leslie concludes.

Wow. While I hope that this is something that I never have to deal with, I have to admit that I feel a lot better knowing what to look for and what I can do to help minimize or prevent it. And if we get to the point where there is bullying, I know what I'll be doing to help my child. Here's hoping this helps you, too.

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Not a Perfect Mom June 17, 2011 at 2:52 PM  

great post! I need to bookmark it for down the road...
bullying is one of my biggest fears for Brooke when she enters school and doesnt have her brothers and sister with her...

Claudya Martinez June 17, 2011 at 10:00 PM  

I wish no one ever had to deal with this. Thank you for taking the time to write this post.

Joanna Jenkins June 18, 2011 at 7:08 PM  

Thanks Michelle, This was VERY helpful. I'm in the process of helping a friend explain to her child "what a real friend is" and it's tough and sad as her 14 year old works his way through the learning process.

There so much info in this post that I'm bookmarking to revisit again.

Thanks, jj

Anonymous June 20, 2011 at 11:14 AM  

Really good post!

Pat June 20, 2011 at 9:55 PM  

Great information, Michelle! Every parent of school-age kids should read this, or at least familiarize themselves with bullying. Unfortunately, it seems to be on the increase. One of my sons told me that when he was in middle school, he had joined in with other boys in his class in taunting a new kid. He didn't even know why he did it, except that he wanted to be "cool." He later found that young man on Facebook and apologized to him for his behavior. The boy ended up leaving that school at the end of the year and going to a Christian school. I was horrified to hear that my son had been involved in bullying, but I was glad that he made an effort to find that guy, apologize and ask for forgiveness.

Michelle June 21, 2011 at 11:22 PM  

Holly - Thanks, I can only hope that you don't ever need it. You know I have my fingers crossed for you!

Unknown Mami - I wish the same. It really saddens me how cruel people can be.

Joanna - Ugh, I'm so sorry you and your friend have to deal with this. I hope it is a successful series of conversations.

Pat - It really does seem to be. I know there was one boy in my fifth grade who looking back was bullied, but we never knew that's what it was... poor kid. I love that your son found him and asked forgiveness. That's awesome.

septembermom June 25, 2011 at 5:02 PM  

This is such important information. Parents really need to recognize that bullying is happening each and every day. We need to share our voices and try to help these often silent victims. Michelle, I'm going to share your post with all the moms I know. Thank you.

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