I honestly had no idea what it was going to be like for my autistic son to transition to high school. Sure, we’d read the course selection book, attended parent meetings and scoured the school website, but like many things in life, you need to learn by doing. Judging by the disaster of a transition meeting we’d had in eighth grade, things were not looking good; we were nervous about what would happen. Fast forward to January, and we are doing pretty well. Sure, we have tough days. But my son and his autistic friends all seem to be hanging in there, doing their high school thing and most importantly, he is happy and learning.
I’ve talked to my son extensively about high school…what things work, what things don’t. My son is very knowledgeable about what he needs to learn. It wasn’t always this way, not by any stretch of the imagination, but slowly through middle school and now in high school, he is very vocal about his autism, how it affects him and how he learns best. He actively participated in his IEP meeting last month, demonstrating maturity and self-advocacy skills that brought tears to my eyes. The minute walked into the room, he announced to everyone, including the vice principal, our advocate and the special ed supervisor that he was “staying for the entire meeting”. No one told him otherwise, but I suppose in his way he was asserting his right to meaningfully participate and express his needs.
“Make sure you have your IEP fixed if it’s bad or if they’re not following it. Make sure you get a study guide if you need it.” ~ Ty on attending an IEP meeting
When thinking about the transition, my son and I came up with a list of “lessons learned” to date, regarding high school and autism. All autistic kids are different; so our experience doesn’t match everyone else’s. That being said, here are some areas to think about with regards to transitioning to high school:
Lunch
The most obvious issue regarding lunch for our kids is noise level. The good thing about high school is that kids are allowed more freedom regarding what to eat and what to do during lunch. They are allowed to go to the library or achievement center during this time to work. My son loves being able to do his homework during lunch period at the library. If your school doesn’t allow it, you can have it written into the IEP.
The second issue that I would tell parents is that because of scheduling, lunch has mixed grades, and there can be many lunch periods. This means your child could end up in a lunch period with no friends and lots of new kids from other grades. And as we know, making friends is often difficult for our kids. If you don’t want your child to be alone at lunch, you should make sure you talk to the school (or have it written into the IEP) so that he/she is in lunch with a friend.
“Just make sure you have friends. Make sure you get plenty of sensory. Make sure you have people around to help you.” ~ Ty on what he'd tell incoming high school kids with autism
Shared Interests
One of the great things about high school is that there are lots of clubs based on shared interests. From sports to music to animae club, there is great opportunity for our kids to find their niche and enjoy an extracurricular activity. That being said, high school kids are expected to take the initiative and independently join/participate.
Now all kids are different, but many autistic kids may have difficulty initiating the communications with the teacher or student group required to get started in the activity. So as parents, you may need to get a list of the clubs, review the clubs with your son/daughter and even contact the teacher to confirm times, etc. In our case, the speech therapist observed the afterschool club just to make sure our son was doing okay on his own. And thankfully, he loves the club. He doesn’t know any of the kids but loves the subject matter, animae. Therefore, he is able to meaningfully participate. He is making new friends based on a shared interest.
Band/Art
The impression I get in high school is that both music and art are taken much more seriously, which makes sense since both could end up being a career choice for some kids. What I will say about high school is that kids can still play band without having to audition into an “honors” band, so there is still opportunity to participate. My son continues to play drums and loves it.
Getting our son involved in band has been one of the best decisions we’ve ever made. I’ve written about it many times, but if your child is in elementary school, I’d tell parents to give serious consideration to having them learn how to play an instrument. Band can be a tremendously supportive environment for an autistic child and provides yet another way for them to build relationships around a shared interest and learn to work within a group.
Leveling
Leveling is a factor in grade point average and future class selection, and therefore, it is important that you have your child placed in the correct leveled class. It is critical that parents take an active role in leveling. What I have noticed since fifth grade is that the sometimes the placement of kids into levels can be very subjective. Sure, it is based on grades and current classes, but it often boils down to one teacher recommending placement based on their perception of how the child will do the following year in a class that they may or may not have observed/taught.
In middle school, the teachers will make recommendations for high school levels and then you, the parent, need to approve/disapprove the recommendations. Before making these decisions, I would suggest that in addition to reading course descriptions and talking to the school that you talk to other parents who currently have kids in your particular high school. They may be able to give you a feel for the coursework and intensity of each level. Look at each course and try to match up what you know about your child’s current academic level to make sure it meshes with what recommendation you were given by the school.
It is important that parents actively participate in leveling and not always assume that the school’s recommendations are correct. There are times when an autistic child may be recommended for a lower level because the school may not want to provide all the necessary supports, services and/or accommodations needed for a higher level class. Or they may think the class would “just be too hard” for the child, and they don’t want to stress them. So instead of recommending an honors class, the child would be recommended for a lower level or vice versa. Know your child, their interests and academic history when given the necessary supports, services and/or accommodations…then look at each recommendation with a fair but critical eye. Your child’s future could be affected by leveling, so pay extra attention to leveling and advocate for the correct level, if needed.
Paraprofessional/Aide/PCA
I would be remiss if I didn’t mention the use of paraprofessionals/aides/personal care assistants (PCA). My son specifically told me to mention this topic in my post. J We have been lucky to have some great PCAs over the years, mostly male, since fourth grade, so he feels strongly that if a child needs a PCA, he/she should have one. I know that the use of a PCA is controversial for some parents and professionals, but I am going to offer my take on the topic.
I believe that a PCA can greatly increase a child’s access to an appropriate and inclusive education when the PCA is a right fit for the child/school and has the proper education, training and knowledge about autism. That being said, too often, I have seen aides who not only lack training/education but appear to be on some kind of a power trip and can actually bully the child or hover too much; clearly, this kind of PCA is not in the best interest of a child.
In high school, and many times by middle school, our kids don’t want a PCA. I feel it is really important that the school and parents listen to what the child wants, and possibly come up with a reasonable compromise if the PCA is still needed. My son still has a PCA but the PCA gives him plenty of space, will sit to the back of the room when not needed, doesn’t hover, and only helps when appropriate. Also, the PCA does not walk with him in the hallways, which lets my son get the support he needs in class without having the PCA there with him constantly. And for now, my son still wants his PCA as part of his education.
Independence
The expectation for independence increases greatly in high school. This may be something parents of neurotypical kids take for granted, but I had to adjust to the increasing freedom and responsibility that is given to high school kids. As autism moms and dads, we are very protective of our babies. It is really hard because our kids are so vulnerable – wandering, bullying, abuse, seclusion and restraint; there is a long list of terrible things out there that our kids are at a greater risk of encountering. For some autistic kids, the new found independence will go a long way to help them mature and cut the apron strings. But for me, as the autism mom, it takes some getting used to.
“You have to do your own growing no matter how tall your grandfather was.” ~Abraham Lincoln
Growing up but future unknown.
My son is turning sixteen in a few weeks, and honestly, it is bittersweet. My son is very smart and becoming more independent by the hour. But he still is vulnerable, needs help as evidenced by his IEP. We are still not sure what will happen with driving, but we do know that he will get his license and drive someday. It may take us a little longer to get there, but he will do that too. And college is coming next and that too, will be yet another bridge to cross. He is growing into a terrific young man, and there is no stopping the train. I just need to help steer the train so he gets there safety.
In conclusion, the transition to high school has been interesting. Some days are rough; an early bus and lost headphones can throw off his entire day. And other days, I jump for joy with pride and happiness. It is so important to celebrate the accomplishments and accentuate the positive, like making honor roll first marking period. And believe me, he worked for it.
I was equally impressed at his winter band concert. The band director and kids were nothing short of amazing. I was blown away, but then again, ‘welcome to high school’; things are serious. The music was harder. All the work is harder. But the rewards are greater too.
Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning. ~Albert Einstein
Are you an autistic adult or parent of a child with autism? Do you have any other tips or advice for the transition to high school? Leave them in the comments and thank you in advance for being respectful