Autistic at the IEP Table - ASCD
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July 1, 2021

Autistic at the IEP Table

Remember, disabilities aren't confined to students. Small changes to IEP proceedings can make a big difference for some parents.

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Autistic at the IEP Table (Image)

In early December 2020, in the middle of the pandemic, the Individualized Education Program (IEP) team at my son's school met with me online about supporting my autistic son in his general education social studies class. As I looked at the many faces on the screen who had gathered to support my son, I realized how grateful I was that they provided key accommodations for me as well. I, like my son, am autistic. I was diagnosed with autism three years ago, and I want to share what has helped and hindered me as I've worked with my son's team around the IEP table. I hope that it will prompt educators to consider reasonable accommodations for adults, as well as for students, when gathering for IEP meetings.

The Gift of Accommodations

As of 2017, more than two percent of the adult population in the United States had been diagnosed with autism,1 with females often receiving their diagnoses later in life than males.2 Most educators are familiar with autism in children, but there are many autistic adults who interact with the school system as well. I was an educator in public preK–12 schools for 16 years, working as a classroom teacher, a program director, and a school principal. During those years, I attended more than 100 IEP meetings, most of them as an administrator. While those experiences have definitely informed the way I view IEP meetings, it is very different to attend such meetings as a parent.

My son's IEP team has provided several gifts of accommodations that have allowed us to work together productively. I call them gifts because I have not had to push the team to provide the accommodations I need. I have been a member of this IEP team longer than I've had my diagnosis, and we have worked together over the years to find what practices work best. Knowing how beneficial accommodations can be, I would encourage IEP case managers to ask family members before IEP meetings what accommodations they might need to successfully participate on the team. I can identify five accommodations that have made a significant difference in my experience as an IEP team member.

Knowing how beneficial accommodations can be, I would encourage IEP case managers to ask family members before IEP meetings what accommodations they might need to successfully participate on the team.

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Julia Antilla-Garza

The first accommodation began when my son was in 3rd grade and his special education case manager took note of my processing speed in the IEP meetings. She initiated the practice of taking periodic breaks from talking so that I could have time to catch up on writing my notes. This gift of time kept me from asking questions out of context or needing statements repeated.

Related to this accommodation is the second: the gift of processing discussions before actions are taken on the IEP. The special education director who attends my son's IEP meetings determined that it would be good for the team to wait for a few days after meetings before revising any IEP items to give me time as the parent to think about proposed changes. This communicated to me that the team knew my input was as essential as theirs in key decisions for my son's education.

The third and fourth gifts are so common that they may hardly need mentioning, but they are powerful, and I'd be remiss to exclude them. My son's IEP team always makes sure to send me copies of draft IEPs and potential goals in advance of meetings. They ask for my draft goals as well. This advanced sharing makes the IEP meeting much more efficient. I have also appreciated the gift of prompt responses to any communication I have with the members of the IEP team. I usually write emails as opposed to making phone calls, and I have found that the timing as well as the content of the response emails are supportive. I have received multiple emails from team members sharing their compassion, empathy, and respect. They acknowledge that the IEP process is hard and that we are all learning in the journey with my son.

After one particularly emotional IEP meeting, I received an email that encouraged me to "hang in there" and to be kind to myself. This was not necessary for the functioning of the IEP process, but it did prompt me to trust the IEP team more than I would have otherwise. Other emails have stated clearly that the team wants my son to succeed and that we share the same ultimate goal for his academic journey. As a parent, this makes me feel that my contributions are valued. These emails put me at ease, and they reduce my anxiety as an autistic parent with a key role at the IEP table.

The fifth gift from the IEP team is perhaps the most amazing. My son's IEP team allows takebacks! There have been a few times when I have agreed to a change in services and then discovered that it was not best for my son. I've been able to reconvene the team to tell them that I want to take back my consent, and they've agreed. While there is language to support this in the procedural safeguards, it still feels meaningful to have the IEP team listen and agree with my parental choice. All these accommodations make the IEP table a more welcoming place for this autistic parent.

Complex Needs, Ongoing Challenges

These gifts outweigh the challenges I have at the IEP table, but there are still some challenges. First, it is not uncommon to have a dozen people at my son's IEP meetings. My son has complex needs, so he has many educators who support him. I am often physically uncomfortable in a small, enclosed room with the limited physical space that it affords each of us around the table.

Due to the sheer number of attendees, I often encounter a second challenge: I find it hard to remember the team members' names and roles. I do not remember the pairing of names with faces, so even if the team members have introduced themselves to me several times, I have difficulty remembering who each one is in a large group setting. Holding IEP meetings virtually helps with this because the names of the participants are listed on the bottom of each picture.

There are also the typical sensory challenges—lighting and sound—that are amplified in an IEP meeting. There is almost always ambient noise in school meeting rooms. Neurotypical individuals can filter out background noise and focus on the conversation. This is not easy, and sometimes not possible, for me as an autistic individual to do. All noise is distracting noise—have you noticed how loud electronic equipment and HVAC systems are in schools? It can be an added challenge if students and adults are moving around and talking outside of the meeting room. One of my more memorable IEP meetings took place in a conference room that looked out at the parking lot. In the middle of the meeting, the car closest to the building had its car alarm triggered. What made it worse was I realized that the car with the obnoxious alarm was mine! I was thoroughly distracted on multiple levels at that point.

But the biggest challenge for me as an autistic parent at the IEP table is that I do not know if I am interpreting certain facial and vocal expressions accurately. Sharing a common understanding of all modes of communication is especially important in IEP meetings because a lack of uptake can be interpreted as being oppositional to the gentle guiding or suggestions being made. I know that there are most likely messages being conveyed, so I am always trying to figure out what they are. I try to pick up on the slightest eye movement or change of tone to decipher the hidden meanings I may be missing. This takes my focus away from the content of the meeting and negatively impacts my processing speed. One way to minimize this challenge would be to have educators commit to being direct when conveying their reporting, their concerns, and their suggestions in IEP meetings.

The Plus Side of Virtual Meetings

As an autistic parent participating in IEP meetings, I've come to prefer video conferencing using Zoom or Microsoft Teams to in-person meetings. In addition to being able to avoid some of the challenges listed above, I have found four distinct advantages to online, synchronous meetings. First, as mentioned, participants' names are displayed—which gives me the opportunity to address an educator by name without having to remember it or worry I may have gotten it wrong. Second, I never have to make direct eye contact, which I find to be distracting to the point that I am not able to track the conversation or understand what is being said. In virtual meetings, I don't have to look directly at the camera to look like I'm participating—facing the screen is enough. Third, I can choose to look at only one face at a time to help my concentration. Other space and sensory issues commonly found around the IEP table are also minimized, and I can control my own environment.

Virtual IEP Meetings

Allowing family members to attend IEP meetings via online synchronous conferencing will likely increase attendance as well as put autistic family members more at ease during the meetings.

Finally, and perhaps most significantly, I can look at my own image to make sure that I am masking appropriately. Masking is the term for when autistic individuals work to make their facial expressions and bodily movements appear neurotypical. Since I know that my facial expressions often don't convey to others the emotions that I am experiencing, by looking at myself on screen, I can make sure that I am appearing interested, pleased, or concerned at appropriate times in the meeting.

For these reasons, I hope that schools will consider keeping virtual meeting options available even after everyone is back to a full-time, in-person instructional setting. Allowing family members to attend IEP meetings via online synchronous conferencing will likely increase attendance as well as put autistic family members more at ease during the meetings.

Show You Care

As educators, we can often get in the mindset that we work with students with disabilities and forget that many of the adults we work with have disabilities, too. But if educators work to understand and accommodate the adults as well as the students they interact with, it can minimize the challenges of family members with disabilities. Whether an IEP team member has an identified disability or not, caring for them and accommodating their needs will help make the IEP process smooth and successful.

End Notes

1 Dietz, P. M., Rose, C. E., McArthur, D., & Maenner, M. (2020). National and state estimates of adults with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 50, 4258–4266.

2 Dietz, P. M., Rose, C. E., McArthur, D., & Maenner, M. (2020). National and state estimates of adults with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 50, 4258–4266.

Julia-Antilla-Garza

Julie Antilla-Garza is an associate professor of educational leadership at Seattle Pacific University. She worked for 16 years in preK–12 education in California before transitioning to higher education.

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