Occupational Therapy, the High School Student with Autism, and Research Trends

Introduction

This topic is important to me because I think it is often overlooked. I am going to tell you a little bit more about me to show you how this topic came about. I have been an Occupational Therapist for about 17 years now. I have worked in private schools, public schools, and private practice settings. Currently, one of the places that I am working in is a private boarding school in the northeast that is for students who have non-verbal learning disabilities and are on the autism spectrum. I have been at this school for about six years now. One of the things that I have realized is that high school students tend to struggle. As we go through this presentation, you might think some of the information on the slides is basic or things that you already know. However, I am going to explain to you why I put certain slides in this presentation. In my experience, I have learned that a lot of people, including administrators, staff, and other support people, are confused about what occupational therapy could do at this level. I have found many articles in mainstream social media about programs for students with autism. These programs do not have an occupational therapist involved. So, I thought it would an important topic to touch base on, and that is the premise for this entire presentation today. 

What is Occupational Therapy?

We know what occupational therapy is.

• Occupational therapy is the only profession that helps people across the lifespan to do the things they want and need to do through the therapeutic use of daily activities (occupations). Occupational therapy practitioners enable people of all ages to live life to its fullest by helping them promote health, and prevent—or live better with—injury, illness, or disability.

• Common occupational therapy interventions include helping children with disabilities to participate fully in school and social situations, helping people recovering from injury to regain skills, and providing supports for older adults experiencing physical and cognitive changes.

(AOTA)

As an occupational therapist, it is important to go back and to read this definition occasionally. Why? I think it is important to make sure that you are promoting your role with different populations, especially if you are working with high school students. I think many can be confused as to what occupational therapy really is. I took this definition right from AOTA and their explanation of what it is. It is helping people across a lifespan do the things they want and need to do through the therapeutic use of daily activities. This is important when you are looking at high school students. It is not just about handwriting or assistive technology, but it is also about how someone is living his or her life. We all know that high school students are looking for independence. They are moving on, and they want to have some freedom from their parents and families. I think that occupational therapy has a big role in this, and it is often overlooked. Occupational therapy enables people of all ages to live their fullest life. It promotes health, prevents injury, and helps them live better with an illness or disability.

• Occupational therapy services typically include:
  • an individualized evaluation, during which the client/family and occupational therapist determine the person’s goals,
  • customized intervention to improve the person’s ability to perform daily activities and reach the goals, and
  • an outcome evaluation to ensure that the goals are being met and/or make changes to the intervention plan.

Common occupational therapy interventions include helping children including high school students, and adults recovering from injury or gaining/regaining skills. Occupational therapy typically includes an individualized evaluation. 

The second bullet has the word "customized." I think that this is a really important piece. This is a customized intervention to improve a person's ability to perform daily activities and reach goals. An outcome evaluation ensures that their goals are being met. I think customized again is the important word. We can tailor what we do to each individual, and this is something that people do not always realize that we can do. We have a holistic perspective which I also think people tend to forget. Our special roles include adapting the environment and fitting the task to the person.

This information is important to review yourself as a therapist. I also think it is important that your families and the staff that you work with understand what occupational therapy can do. 

Age Range

For the purposes of this presentation, we are going to talk about high school students which encompass ages 14 to 21. First, we are going to talk about the high school student. Then, we are going to talk about some research topics and trends. 

IDEA and IEPs

• According to IDEA students who are eligible can have an IEP through high school graduation or age 21.
• IEP’s must include a transition plan (by age 16).
• At 18 the student becomes legally responsible for his/her own IEP.

Those with autism in high school have an IEP or a 504. The IEP can be in place until high school graduation or age 21. And, I believe in some places, the age is 22. It really looks like for most purposes it is age 21. I believe there might be some states or some areas where it could be age 22. But definitely through age 21. Interestingly enough, if you don't know IEP's must include a transition plan by age 16. And at 18, the student becomes legally responsible for his or her own IEP. I find this fascinating because we are used to the parent having control and being the responsible party. If your student is going off to college or even if they are still in high school and they are going to stay there until the age of 21, they can give their parents continued responsibility for their IEP. However, this has to be in writing. Again, I think it is important when you are working with high school students, especially ones that will be there through age 21, that they understand that they are responsible for their IEPs. They need to be present, and they need to be showing up to the IEP meetings. They need to have discussions as far as their goals and objectives. I think those things are critical and we often sometimes forget that because we think of this as a passive process. The older they get the less passive the process should be. This is one way where OTs can help. When they are responsible for their own IEPs they have some understanding of what that means. 

• Best transition planning should begin at or around the student’s 13th birthday.
• At age 14, students should start attending their own IEP meetings.
• At age 16 vocational and transitional plans should start being made.

The best transition planning should begin around a student's 13th birthday. The IEP must include a transition plan by age 16. This may seem a bit young, but they should be a part of their IEP process. I often ask my kids, as young as fifth grade, about their input on their goals and objectives. If I feel like they can handle it, I might even ask at a younger age. I sometimes go older if I feel like they need more time. I also ask them how they think they are doing in addition to collecting data on their goals and objectives. I feel like they need some responsibility in that.  At age 14, it is suggested that they start attending their own IEP meetings. You can encourage this at a younger age if they are comfortable. Then, at age 16 the transitional plans and vocational plans should start being made.

• There are no IEPs or 504s in college.
• You can get accommodations under 504 in college.
• The student has to seek out accommodations in college.

There are no IEPs or 594s in college. However, you can get accommodations under a 504 in college, but the school does not have to follow an IEP or a 504. Another critical piece is that the student needs to seek out accommodations in college. Administrators do not seek these individuals out. It is the student's responsibility. This advocacy should start early so they are prepared. These are goals and objectives that can be worked on during those high school years.  

• “It should be realized that upon an individual’s 18th birthday, they change from a system of being entitled to certain rights and privileges to a system of eligibility. They have to be considered eligible for the adult services system. This could be difficult based upon the funding for certain organizations or the severity of the individual’s disorder. “

(Autism Speaks Transition information sheet State of CT)

This is more of a privilege rather than an eligibility issue. This can be difficult based upon the funding. Depending on the area you are in, there can be long waiting lists for services after the age of 18. Thus, it is critical to be thinking about what those services might look like or might be needed now while the student is in high school. This way they can be placed on the waiting list. This information came from an Autism Speaks transition information sheet. I live in the state of Connecticut, but it is probably similar in other states.

Common Struggles

Now, we are going to talk about some common struggles for high school students.

• anxiety
• depression
• sensory processing difficulties including self-regulation
• behavioral difficulties
• addiction (drugs, video games)
• abuse (physical, emotional)
• bullying
• social difficulties
• language difficulties

Again, this seems like it is basic information and things that everybody knows. However, when thinking about the high school student, we tend to stick with academic goals and objectives. I also think that parents are looking for academic goals and objectives. There is a wider range of areas that we can address for transitioning to the workforce, college, or whatever it is that they are going to be doing.

Common struggles with this population include anxiety and depression. There can be sensory processing difficulties especially with those with autism spectrum disorders. There can also be behavioral difficulties. I think addiction is an important thing to talk about as is mental health, especially at this age. They can be addicted to drugs or video games. In fact, video game addictions and increased screen time are becoming a prominent thing. There can be both physical and emotional abuse, bullying, and language difficulties.

• sleep issues
• medications
• puberty
• eating/food issues
• executive functioning
• college
• vocational skills
• independent living skills
• self-help
• leisure activities

You may work with an individual on how to manage medications. Sometimes this comes easy and sometimes they need help. Executive functioning for organization and time management becomes important during this time. What do you want to be when you grow up? Where do you want to have a job? What does it take to apply for a job? What does it take to apply for college? And if they are going to go off to college, they need to take an SAT or an ACT test. While you do not want to stress out your high school student, these are crucial areas that they need to think about. Four years is a very short time to start planning for all of these things. 

I think independent living skills is also another important one. I saw a news segment probably last summer about adulting classes for millennials. We should be making millions off of this because this is what we teach people to do every day. And, students are not learning this in high school. They are signing up for these courses in college or right after college. This includes activities such as balancing a checkbook, budgeting, how to grocery shop, do laundry, and cook certain foods. This goes back to my initial slides about defining occupational therapy. These "adulting classes" are what occupational therapy is. 

• friendships/relationships
• life balance
• parents
• self-advocacy
• “peer pressure”
• driving
• independent living
• knowing about and finding resources available
• gender identity

Friendships and relationships are key. They also need to have a life balance. I think this is another one of those things that people talk about all the time. They need to learn how to balance academics, fun, studying, sleeping and hanging out with friends. They also need to make meals and pay bills. These activities can be really hard for a lot of people especially those with ASD. 

OT in High School

• self-awareness
• relationships (sex education)
• safety
• driving
• grocery shopping
• laundry
• cleaning
• interview skills

Self-awareness is being aware of yourself and your needs. This also leads to self-advocacy especially if the student is going off to college or even transitioning into the workforce. They need to learn how to speak up for themselves, how to look for services and how to ask for help. This is also knowing if something is wrong and what you should do. Some of our students need a step by step analysis and how that works. Interviewing skills are great to review. What do you do when you go on an interview? What questions might be asked of you?

• job training
• resume writing
• volunteering
• phone calls
• car maintenance
• applying to college or vocational or technical school

The other pieces are job training, resume writing, and volunteering. Making phone calls seems like a basic skill, but they need to know how to do this properly. We are in a tech world where people are Snapchatting, Instagramming, Facebooking, and texting. Many of this generation do not understand how to do this. If you are going to go for a job interview or if you have a college interview and somebody calls you, you need to be able to return the message. I think those YouTube videos that you see of teenagers trying to learn how to use a rotary phone are proof that our phone skills are rather lacking today. How to take a message is another area. You need to write that down and pass it on to another person. There are a lot of steps that are involved with that. I think car maintenance is always a good thing as well. They need to know what to do for a flat tire, getting air in the tires, if the radiator overheats, etc. If you are working on driving skills, car maintenance is an important piece of that. 

OT and Autism Spectrum Disorder

• AOTA has a tip sheet Living With an Autism Spectrum Disorder (ASD): The High School Years.

AOTA.org

We are going to talk a little bit more about OT and Autism Spectrum Disorder. There is a tip sheet that can be found on AOTA.org that has some information about living with autism in the high school years. It is a good starting place. You can definitely look that up on AOTA if you want to check that out.

High School to College

• "We make the erroneous assumption that high schools are getting students ready for college, and they're not really," said Dr. Gerard Hoefling, who works with the Autism Support Program at Drexel University. "That's not their primary task. High schools do a wonderful job of getting students ready to graduate from high school."

(Vox article “High School Sets Up Autistic Kids to Fail in College. Here’s How to Fix the Problem”, 05/2015)

 I pulled a quote from a Vox article which I thought was interesting as I had not thought of this perspective. We make assumptions that high schools are getting students ready for college, but their job is to get students ready to graduate. Then, we wonder why our students can fall apart when they go out into the real world or not know what they want to do.  Transition to college can also be difficult as they are not prepared to live a life beyond high school. This is a critical piece for students who are on the spectrum. 

High School to College or Work

1. supporting the student in attending their own IEP meetings
2. discussing and working on life skills including independent skills
3. organization and time management skills
4. asking for help
5. advocating for yourself
6. understanding what college/work is like
7. campus visits (can include role-playing)

These are some things that OTs can support. We talked about going to their own IEP meetings, working on independent living skills, and advocating for themselves. Another area is going on-campus visits with role-playing. What is college like? It is much different when you are visiting versus needing to get to class on time or hand in a paper. Role modeling different scenarios can be really helpful. 

Handwriting in High School

• The focus of services should begin to shift.
• Handwriting should no longer be the focus.
• Strategies for handwriting should continue to be incorporated.
• Assistive technology to help with poor handwriting should be incorporated.

For high school students, handwriting should no longer be the focus. By the time someone is in high school, handwriting is not going to change much. You have to work on different strategies with the student. Many times, teachers will send a referral for a child not keeping their words in the lines, writing too big, or messy writing. They tend to see OT services as only handwriting. Due to this perception, around fifth or sixth-grade, people start thinking that OT is not needed anymore when they do not need help with their handwriting. To my point, a child on the autism spectrum still needs that support and help through occupational therapy. This may not be for handwriting but in a lot of other areas that we just talked about. I can tell you that 90% of the referrals I get in high school have something to do with handwriting. Thus, it is vital that people are aware that OT is a lot more than just handwriting. 

• Assistive technology can include
  • voice to text
  • word prediction
  • writing apps

Handwriting is definitely important, but the focus should really be shifting to other skills. And, assistive technology is one of those things. This can be used for the student that has poor handwriting. They can learn how to use voice to text, word prediction, and/or writing apps. Additionally, we can teach them how to use a phone or a computer. If their parents will allow it, I have my middle school students bring in their phones and we work on their phones. I show them how an Apple or an Android phone works. I instruct on the differences between operating systems. I also show them how to make an emergency phone call. They can problem-solve if they have no service or wifi connection. Not everybody picks these skills up immediately and panic sets in if you do not know how something works. We also make the assumption that because kids are so busy on their screens that they know everything that their phone or their tablet; however, many do not know the other features of their tablets or their phones other than playing games. I think in the age of technology this is something that is critical. It is important they realize that their devices can be used for other things such as assignments.

• Services can continue to be individual or group.
• Things that may be important to focus on for the student with autism:
  • Word processing/computer skills
  • Independent living skills
  • Executive functioning skills
  • Money management
  • Environment negotiation (reading maps)
  • Emergency skills (911, first aid)
  • Medication management

The services can be provided either to a group or an individual. We talked about most of these. Money management is a huge one. We give our kids money and expect them to figure out what to do at the store and how to budget things. They may also need to figure out the difference between ounces, pounds, or whatever it is. One of the areas I work on is emergency skills. You would be surprised at how many students do not know their parents' first and last names. Or, they do not know their address or their phone number. They also do not know simple or basic first aid even putting on a Band-Aid. For example, a 19-year-old student of mine asked me what to do if he was feeling sick one day and threw up in the bathroom. We had to go through the steps of that. These skills are important, and sometimes they need to be taught discretely. 

• These are skills that are good for all students, but important for the student with autism.
• It might take them longer to learn, more structure may need to be provided or other resources may be needed.

It might take a little bit longer for the student on the spectrum to learn these skills. Or, they might need some more structure or need the task broken down in different ways. So I think it's important to recognize that.

OT Interventions

• motor based role play
• video modeling
• visual models
• real-life experiences
• social skills groups
• group intervention
• cognitive behavior approaches
• interest-based groups

There are a ton of interventions and ways that you can address these types of things. Real-life experiences, of course, are always also important. If you have students who are not in a life skills type of class, it might be important to address this area. Fieldtrips can be great. I also like to cook something with my kids. They need practice in a real context. Again, sometimes working in a group can be great. Often, I will do social skill groups with the speech-language pathologist.

Other Intervention Resources

• The Zones of Regulation
• YouTube (or other tutorials)
• Autism Speaks has a transition tool kit and a community-based assessment tool.
• The Center on Secondary Education for Students with Autism Spectrum Disorders.

I just listed a few interventions and resources. The high school crowd that I work with love YouTube. You can find all sorts of videos like "proper hygiene showering in the morning." They are more apt to watch that then they are to listen to me. I see nothing wrong with using the resources that are out there and that are interesting for the student. The most important thing is that students are interested in what you are saying to them. Another helpful resource is The Center on Secondary Education for Students with Autism Spectrum Disorders. 

Assessments

• Canadian Occupational Performance Measures (COPM).
• Adolescent/Adult Sensory Profile
• Behavior Rating Inventory of Executive Functioning (BRIEF)
• Career Interests, Preferences and Strengths Inventory (CIPSI)
• Transition Planning Inventory
• Ayres Sensory Integration Clinical Observation
• Wide Range Assessment of Visual Motor Abilities

I have listed some assessments for this age group. A lot of this is focused on transitioning and careers. The CIPSI is an adult/adolescent profile which I think is an important one. I still think that the visual-motor and the sensory integration pieces are still very important for our students especially when you are talking about transitioning to college or the workforce. How is the college student or worker going to be with loud sounds? How is their attention? If they want to work in the mall, are the loud noises and people coming and going to affect them? People do not always think about these variables.

Transitioning to College

• College is not a right but a privilege.
• IDEA does not apply.
• Student responsibility increases (they need to provide documentation and advocate for themselves, and they are responsible for their progress).

We are also going to talk about transitioning to college. What do you want to be when you grow up? These open and honest conversations with your students can really help drive your plan of service. It gets a little bit tricky because parents do get involved and parents usually have their opinions on what they want their son or daughter to do or to be. Although, some parents are more flexible than others.

Again, college is not a right but a privilege. And, I think it is important for parents and students to understand that IEPs do not exist in college. It should be up to the student. Mom and dad are not going to be calling professors and checking on their students. Thus, can be a very hard transition for both parents and students. 

Once in college, they need to be able to provide the documentation and then advocate for themselves. Most colleges have student services or students with disabilities services office. They need to know what documentation they need and if it needs to be signed by a doctor. They can start working on those things before they go off to college. They are also responsible for their progress. 

Transitioning Out of High School

• Not all students will pursue a college education.
• Life skills become critical at this age.
• Independence also becomes critical.

I read something about the number of students on the spectrum that go to college. If I remember correctly, the number is not that high. These students not attending college can experience a feeling of loss because supports are removed. Everybody is doing different things, and the expectation of independence has quadrupled. This can be really hard for some of our students. I think that this is something that is critical enough to start talking about even freshman year of high school so that your students are prepared. I think it is also important that parents are aware of the same thing. 

• This can be a big change for any student
• Finishing high school can be perceived as a huge loss in support.
• Students and parents must find their own support system and resources.
• IT IS CRITICAL PLANNING AND TRAINING FOR THIS CHANGE BEGIN EARLY!
• There are often YEARS long waiting lists for services and supports.
• This is a large area that OT’s can work on and address. OT’s should be working with students to help them gain independence, explore resources and teach them basic life skills.

Planning is crucial due to sometimes years-long waiting lists for supports and services. You may have to actively go out and seek those. It is also important to keep checking back on the waiting lists. While the focus in high school is academic goals, I think it is also important to look ahead and include life skills like money management or using the phone. 

Research and Methods

• There is a lot of research being done on social engagement and social skills.
• Usually, the sample size is small and based on the many variables in individual people, studies are hard if not impossible to replicate.
• There is research being done around gender identity.
• There is research on various and new treatment options.
• It is difficult to find research geared toward high school students.
• Most research is geared towards either younger children or adults transitioning into either college or the workforce.
• There is not a lot of research that is specific to occupational therapy and high school students. 

We are going to now switch gears and talk about research and methods. Research is extremely hard to find on this topic. While there is not a ton of information that I could find, there is a lot of information on early intervention and young school-age children. I did find some information on social engagement and social skills as this is the core of ASD so it would make sense that there would be a lot of research in those areas. The other thing with any research for the high school student is that the sample size is usually small. Additionally, there are variables in individual people that are hard to replicate. This is why the evidence is not as strong as it could be. There is also a lot of research being done around gender identity. I think that this is a large area that really needs to continue to be looked at. There is also always research around new treatment options.

Medication Research

• There are currently 2 medication trials being conducted.
• Both involve altering the hormone vasopressin for increased social communication.
• One medication suppresses vasopressin the other increases the amount of vasopressin.
• There is evidence that people who have autism produce too much or too little vasopressin.
• In general, there is a lack of research when it comes to adolescents with autism and medications. 

There is evidence that people who have autism produce too much or too little vasopressin. Currently, there are two medication trials that are being done. Both involve altering the hormone vasopressin for increased communication. One suppresses the hormone, and the other increases the amount of the hormone. However, there is a lack of research when it comes to adolescents with autism and medications. 

Gender Identity Research

• In a 2019 study by Anglia Ruskin University (Dr. Steven Stagg) found a link between autism and transgender and nonbinary individuals.
• Dr. Stagg’s research showed gender identity was more prevalent in people who were female at birth.
• He also hinted at the underdiagnosis of autism in females complicating the issue.

Interestingly, Dr. Stagg stated that there was more gender identity prevalency in people who were female at birth. And, the fact that there is an under-diagnosis of autism in females also complicates the issue. 

Driving Research

• There are no evidence-based guidelines for fitness to drive.
• Teens with ASD and/or ADHD made more errors when driving.

Teens with ASD or ADHD make more errors when they are driving. Many of the students that I see do not drive and have no interest in driving. However, they need to then know how to take public transportation. What if the bus is late? How do you take the bus? How much does it cost? Do you need to buy a card? Are you going to take the subway? If you have a student that is interested in driving, I think that this is another area where occupational therapy could be beneficial.

Treatment Research

• Researchers at UCLA are looking into personalizing interventions with a treatment plan called SMARTer (sequential multiple assignment randomization trial) Approach.
• In this research, the students are assigned to therapy. If they are not making progress after a set amount of time there are 3 options. Continue therapy, increase the amount of the same therapy, or switch therapy. This is done to see what is the greatest benefit to the child including specific therapy.

There is some research being done at UCLA on treatment to determine which one has the greatest benefit to the child. I think this is interesting because we often wonder should treatment continue? Do we discontinue? Do they need more? Do they need less? I think this research is interesting because I think it might answer some of those questions.

Complications with Research

• Small sample sizes.
• Hard to replicate.
• Lack of diversity (race, socio-economic, and gender).

We have talked about a lot of this. There is also a lack of diversity, race, socio-economic, and gender variables. For example, much of the research is "male-heavy."

Occupational Therapist's Role in Research

Research takes funding and time, and it can be daunting to set up. However, it is important to continue to try to develop questions that can be tested and gain ideas from your current work with high school students. It might be helpful to connect with other service providers especially if they are also working with high school students.

• The Journal of Autism and Developmental Disorders published a study in 2016. How Sensory Experiences Affect Adolescents with an Autistic Spectrum Condition within the Classroom.
• One of a few studies that looked at self-report of sensory issues.
• It found all students reported sensory issues. Some reported it affected their classroom performance, others did not.
• This study opens the door for many more research questions and opportunities around sensory processing.

This study found that many of the students report sensory issues. I think this is a critical area that occupational therapists could be working on with the high school student. You need to ask your students how they are doing in this area. I have asked my students to help me design the perfect classroom as an example. You will get some really good answers and information from these candid talks. This information is especially important as they are transitioning to other settings.

Resources

Autism speaks.org

References

Classen S., Monahan, M., & Wang, Y. (2013). Driving characteristics of teens with attention deficit hyperactivity disorder and autism spectrum disorder. American Journal of Occupational Therapy, 67, 664-673. doi:10.5014/ajot.2013.008821

Murray, N. (2015, May 14). High school sets up autistic kids to fail in college. Here's how to fix the problem. Retrieved from https://www.vox.com/2015/5/14/8594375/high-school-sets-up-autistic-kids-to-fail-in-college-heres-how-to-fix

Summary

I would like to thank you all for listening. I hope you found some of the information useful, and that you can apply it to your own work. I care deeply about this area and see the need to provide our services. I find that occupational therapy can really be critical at this age for the reasons that we gave talked about through this presentation. There is definitely more research that can be done as well.

Questions and Answers

Do you have any tips for goal writing with this population? 

I feel like the most important tip for goal writing with this population is to think about not only academic goals but also about non-academic goals. Again, this is something that we talked about earlier that can be really really hard for parents and staff to understand. I think we need to write both academic and life skill goals, and we need to get both the student and parents on board.

Do you have any suggestions for working with difficult parents? 

I think that goes along the same lines with goal writing. I try to explain to parents what I do. Sometimes, you get a parent who will say, "Why do they need to be working on this right now? They are going to be living with me until their 40." I think it is important that they realize that their child could take more of a role in helping around the house and being more independent. I try to point out that it usually makes people feel good when they are active and are participating in family roles. I ask my students, What is it that you want to do?" We can outline the parents' priorities and the child's priorities and see if we can match those up.