Last night, my 8th grader successfully participated in his middle school's musical production. This was the third year that he was in the musical, but for the first time, he had a speaking role. I cried the first night, feeling so grateful that my son had this extraordinary opportunity. I never take his accomplishments for granted; he worked so hard to get where he is. I was also thankful that my son has many great teachers who understand autism and who know how to help include our special needs kids in academics and extracurricular activities.
Three years ago when we began our transition meetings, I lamented over every little decision, afraid of what loomed in middle school. Let's face it, for many of us who do not have autism, we have mixed memories of that tumultuous time in our young lives. Therefore, as a parent, even when we have a neurotypical child, it can often be nerve-wracking transitioning from grade to grade, let alone from elementary to middle school.
As the end of 8th grade draws near, the lesson I learned is that middle school can be a wonderful experience for a child with autism. I also learned that even in the best school, things will never be 100 percent perfect all of the time: You may still have occurrences when a certain teacher does not follow the IEP or conflict arises for your son or daughter. But overall, some middle schools are doing inclusion well for kids with autism and consequently, the kids are thriving.
Looking back on the past three years, I wanted to document the critical factors that seemed to make a difference in my son’s experience. Some of these factors parents can influence, and some are more difficult. I can personally attest to the difficulty of rolling the ball uphill, so to speak, when it comes to implementing change in schools. But if we start to identify what is working well, perhaps we can start to advocate and change schools so that they work for kids with autism instead of against them.
Here are ten tips for making middle school work for kids with autism.
1. School Culture and Leadership
In my opinion, leadership is the number one factor in determining whether any school on any level can successfully teach children with autism. Whether the focus is anti-bullying, scheduling, or autism education, the principal and vice principals drive how well staff will follow these initiatives as well as the general culture towards inclusion.
Unfortunately, this is not something a parent can control, but it is a factor you can be aware of as your child moves into another school. If a principal lacks understanding of autism, this is a red flag. It will make things all the more difficult for you and your child. Conversely, when a principal gets autism, the results can be amazing and culture change follows: teachers follow IEPs, children with special needs are not just included but welcomed in every activity and sports, and leadership takes a proactive role in helping your child succeed.
2. Leveling Academic Subjects According to Ability, Not Diagnosis
This subject is one of my pet peeves. Too often, educators and even parents are tempted to put our children in lower levels when they really just need to be in the “correct” level, whatever that may be. What I have learned as a parent is that even though there are some rules schools use to level, leveling can be quite subjective.
Frequently, autistic kids have splinter skills, so leveling can actually be a great way to best meet their needs. I would encourage parents to analyze every single subject and then select the level your child can best learn. Do not make a broad stroke of the brush and assume a child should be on one level for all subjects. For example, my son is in high math and science levels but still has learning support reading. Yet, when we made the jump from 5th to 6th grade, the 5th-grade teacher wanted to put my son in a lower level because she did not want to “stress him out.” Eventually in 7th grade, we were able to bump him up a level to high math. Looking back on it, this was the wrong move. As parents, we should have insisted they put him in the correct level from the very beginning.
Our children should be encouraged to excel in the subjects they are good at and supported with accommodations and services in order to help them grow. Now that my son is in 8th grade, he is still excelling in math and science. Although he tolerates English and is making progress, it is not his interest area.
3. Knowledgeable Case Management
Many kids with IEPs are assigned a case manager whose task it is to coordinate with regular education teachers, make sure the IEP is being followed, own the IEP document on the school's end, etc. It is critical that the person who is assigned to this task has a solid understanding of autism. It can make a huge difference in how the IEP is created, implemented, and how they assist regular education teachers so they understand our children, accommodations, etc.
For example, my son's case manager attends the regular education team meetings and often helps regular education teachers understand autism, how it affects the children, and how to implement adaptations. While many regular education teachers have some knowledge about autism, having a case manager who is a specialist in autism helps both the student and the teachers come up with quick, reasonable solutions to issues kids may be having and help them succeed in the regular classroom.
4. Attention to Program Modifications and Specially Designed Instructions
While the entire IEP is important, it is worth mentioning that SDIs are critical to helping a child learn by providing individual adaptations, accommodations or modifications. Does a child require a study guide three days prior to tests? Does he or she need testing in a quiet, alternative environment? Does a child require that their homework is adapted so that the workload is more manageable?
These are just a few examples of Specially Designed Instructions (SDIs) that could mean the difference between a child melting down in frustration or a child successfully learning in an inclusive environment. Also, having the right SDIs can allow a child to succeed and learn in a higher level class.
Keep in mind that in middle school, your child will be exposed to lots of different teachers during the course of the day and even over the week. While it is critical that the SDIs are well documented in the IEP, it is a good idea to write a brief email to teachers that sums up your child's strengths and weaknesses, SDIs, what you want teachers to know about your child, etc. Parents certainly hope that all teachers read the IEP, but it is good to create a quick summary letter in the beginning of the year in case it does not happen.
5. Think Technology
In middle school, there is a lot more writing and note-taking. So if you have a child with fine motor skill difficulty, now is the time to look for technological solutions. The upside about the timing in middle school is that our children often become more mature and able to handle the responsibility of caring for the technology. Even if they cannot, the teacher or personal care assistant (PCA) can be responsible for moving the technology from class to class.
The addition of a netbook was a game-changer in my son's educational career, allowing him to independently take notes almost overnight. He literally went from having to rely on the PCA/teacher for note taking and dictation of long writing assignments to doing all writing himself within one week. Before the netbook, he did have access to a computer written into his IEP, but it was not as accessible as it needed to be, and it required that he move from his seat to another part of the classroom.
With a netbook, he is able to do all his work, where ever and whenever he needs to do it. His writing capabilities have increased as well as his independence and self-esteem. While this is only one example of how technology can change a child's life, it points out that the IEP team should always be looking at ways to incorporate technology to make a child's learning more effective and easier, thereby reducing frustration and potential behaviors.
6. Positive Behavior Support
If a child has “behaviors that impede his/her learning or the learning of others,” the behavior box in the IEP should be checked, and the child should receive an updated functional behavior assessment as well as an updated positive behavior support plan that reflects the middle school environment. Middle school is a totally different environment than elementary school in that children generally switch classrooms throughout the day as opposed to learning in one class by one teacher. So many teachers will need to understand the positive behavior support plan.
As a parent of a child with autism, I know how critical schedules and sensory breaks are to helping my child self-regulate. In my opinion, sensory should be considered/evaluated for autistic kids and written into the IEP, if applicable. Access to the right kind of sensory can make all the difference in the world to our kids: help them regulate, calm, focus. If the school does not mention it during the IEP meeting, ask and make sure it is considered.
One of my sensory problems was hearing sensitivity, where certain loud noises, such as a school bell, hurt my ears. It sounded like a dentist drill going through my ears. —Temple Grandin
Bullying in school is a very serious issue for special needs children. Luckily, my son has not experienced bullying in middle school. The reason I believe that he was spared is partly luck but also more importantly, the school administration and teachers take bullying very seriously. It has been my impression that there is no messing around in the school when it comes to this issue. If bullying is suspected, it is swiftly dealt with by an adult.
My take as a parent is that a strong anti-bully stance is more a cultural factor within a school rather than some kind of a policy mandate from the powers-that-be higher up in the district. Again, if a school has a strong principal who understands autism and lets it be known that bullying will not be tolerated, the cultural shift makes its way down to the teacher, students, and parents.
Okay, let's admit it...lunch can be noisy. It is noisy in elementary school, and it will be noisy in middle school. The only difference in our middle school is that the kids get to choose where they want to sit. For some kids, lunch can be torture; listening to all that noise frays their nerves. So how and where lunch is eaten should be a topic for a middle school child's IEP meeting.
What are the alternatives to sitting in the noisy cafeteria? They are as varied as the creative ways the IEP team is willing to think outside the box. Our school offers both library time and a few lunchtime clubs as another place to do lunch. For kids who want to stay at lunch, teachers have creatively found tables in the cafeteria where noise is minimized. Another thing we successfully tried in 6th grade was leaving a little early from lunch to get sensory to help him regroup. As far as seating, teachers can take an active (rather than passive) role assigning the child to a table with his friends or if he doesn't have friends, find a willing buddy who will let him or her sit at their table.
The point of this item is that parents should bring up this topic at the IEP meeting and discuss any potential issues. It is amazing how you can help a child's learning by making their lunch a pleasurable experience. If the child has a pleasant, non-stressful lunch, he or she is better able to think for the rest of the day and spend more time learning and thinking about school subjects.
9. Consider Chorus/Band and After School Activities
In middle school, it's never too late to join the band or chorus. In addition to the studies that show that kids who participate in a music program do better academically, autistic children often get a chance to participate in a structured group activity, generalize social skills they may have learned, and create friendships and acquaintances based on a shared interest.
My son has been playing drums since 4th grade, and it has been a wonderful experience. I have written about this topic a few times, given the positive outcomes. While my son has not created close friendships in band, he has learned how to work well within a large group, the concert band, and how to work within a small group, the drummers. Last fall, my son did the unthinkable; he participated with the 8th graders in the high school marching band. He wore earplugs, so he could cope with the noise, and he loved it. He was so excited about the experience that he told me that he wants to do marching band in high school.
In the end, participating in music has given my son a creative outlet, which he will have with him for entire life. He enjoys performing and belonging to a group and has learned to be appreciative of others who play music.
Chess Club? Science Club? Video Game Club? Art club? Why is this important? At the end of the day, our kids need a place where they can do something fun, that they enjoy. It also gives them an opportunity to create friendships and relationships based on a shared interest.
For example, my son may have trouble initiating a conversation, but put him in video club, and he can talk about video games, anime and YouTube videos until the sun goes down. The most important thing about after school activities, in my opinion, though, is that he gets to do something fun at school, creating a positive experience at school where he has the opportunity to interact with peers.
10. Create a Friendship Group
At my son’s school, they created several social events that work well for our kids. First, they have a monthly game/movie night where all kids, autistic and neurotypical, gather to have fun. Secondly, we started a Best Buddies Chapter, which is now part of the game/movie night. Best Buddies also includes other activities such as charity work. Best Buddies is an organization that collaborates with students to create friendships by pairing up neurotypical children with children who have intellectual and/or developmental disabilities. It is a wonderful experience for both the neurotypical and autistic kids. My son has formed a tight bond with his buddy who is his personal peer angel, in my opinion. She will ask him to sit with her at lunch, talk to him in the hallway, and most of all, accepts him for exactly who he is.
Parents can take an active role in creating friendship groups as well. In addition, to supporting school activities, my friends and I actively get our kids with autism together outside of school. So whether the kids are bowling or going to a movie, we work hard to help them have fun outside of school.
Sometimes our kids aren’t able to coordinate or communicate with each other, so we (the parents) arrange the activity based on their preference. Sometimes, we coach our kids to text or call each other to get the social event set up. Middle school can be a great time to help our kids spread their wings and experience independence. Tyler and many of his autistic friends learned how to go to the movies by themselves over the past year. It has been a wonderful experience.
The aforementioned suggestions for making middle school work are just that, suggestions. I am sure there are other great suggestions that parents and adult autistics have for making middle school work, and it would be great for you to share them in the comments.
The bottom line for parents is that middle school can be an extremely positive experience. Sure, it can be a time of growing pains and tween angst, but it can also be a time of maturity, growth, and independence. Moreover, parents can help their kids get there by knowing how to advocate and assist our kids in enjoying friendships.
Now that my son is at the very end of middle school, I feel like these 10 things were critical for making his experience positive. His experiences and friendships from middle school will carry over to high school. And perhaps in another few years, I will be writing about what works there too.
"Don’t underestimate persons with autism, try to understand." —Joell
Specially Designed Instructions for Educators: IEP Modification/Adaptations/Support Checklist