The Empathy of Autism, part I

Navigating Depression with my autistic son, and how people with Autism showed us deep compassion and empathy.

Note: I have permission from my son to write about his experience.

Depression is difficult. Depression seems to be a monster all to itself that sits inside our minds, finding the worst side of everything, and making it impossible for us to enjoy even the grandest of moments. When suffering from depression when you are also Autistic, the burden of depression becomes so overwhelmingly heavy, it is as if we are being suffocated by everyone and everything in the world at once.

Autism complicates the processing, interpretation, and expression of emotions. With such emotional complications, dealing with depression when you have autism can present an overwhelming challenge. To further complicate the matter, many characteristics of autism can mask cardinal features of depression.

Autistics like me often struggle from withdrawal from people, body pain, negative self-image, self-harming tics, and a lack of access to the verbal expression of thoughts. For medical professionals to see our depression, they have to recognize the similar symptoms of depression and differentiate them from the autistic traits. Because of this, depression is often missed in autistic people, especially teens, and we are left to navigate our depression alone. [1]

Since depression is underdiagnosed in people with autism, research in this area is slim, which in turn makes services unavailable to us. Furthermore, with autism research so heavily focused on early diagnosis and early treatment, few programs are accessible to autistic teens and adults where they could be observed and supported.

It is a downward spiral of frustration, a dead end road where many autistics stand alone and are eventually forgotten.

This became painfully obvious to me while trying to find intervention for my son. Jacob is 15 years old. He was diagnosed at age 3 with Autism and Sensory Integration Dysfunction. Once he entered the school ASD program in Kindergarten, his growth and progress was

There were early signs of depression that were missed by professionals.

steady. A few months into his fourth-grade year, Jacob began to slip. His grades started to decline, and he found it difficult to start his day, crying often about having to attend school. Some days, I had no choice but to let him stay home.

Since then, we have been in a cycle of depression. Jacob cycles from calm but functional, to self-deprecating, to suicidal depression in predictable patterns. His worst stages of depression are ever deepening with each revisit. He missed so much school that he was constantly in danger of failing. Failing not just because he was physically absent, but also because on days he was present, he was unable to function as expected. After a while school became such a burden for us both that I pulled him out of public school and started teaching him at home. This was following his first suicide threat.

At first our focus was on exercise, nutrition, and mental health. But as the depression further invaded Jacob, I was lucky to get him out of bed before I had to go to work at 3:00 in the afternoon.

Then it got really bad. I would spend hours outside his locked door talking him down, and even had to remove the door lock for a while. I would make myself available to talk at any hour, which meant we were doing some of our most important therapy in the middle of the night. I would sit in his room, trying to get him up, and he would tell me to leave him alone. I usually gave Jacob his space when he needed to cool down, but I was unwilling when he was stuck in bed. I told him, “You can have anything you want in this world, and I will fight to get it for you, but the one thing I will not do is leave you alone.”

Still it got worse. By the end of 2015, I had set my phone alarm at 3:00 am and 6:00 am every night so I could wake up to check on him. This was especially difficult since I worked evenings. I was terrified I was going to lose him.

Reaching out

I would confide in people about Jacob’s depression, seeking help. Most people know nothing of how to help someone who is suffering from depression. With shows like Dr. Phil and pop Psychology publications that further enhance myths, I was handed criticism and judgment, rather than support.

Why did you pull him out of school?

Why not just MAKE him get out of bed?

Isn’t he just acting lazy and trying to get your attention?

Kids with REAL depression don’t threaten suicide!

ROTC will straighten him out. He just needs discipline!

You can’t help him. He needs a man in his life to be a positive male role model.

The insensitive statements go on and on.

After being on a waiting list for 5 years, the state of Georgia decided to give my 15 and 17-year-old kids access to Medicaid in December of 2015. Now that I had access to health care, I immediately started the process of searching for a psychiatrist for my son.

We had tried to find free or sliding scale psychiatry for him before we had Medicaid, but surprisingly few psychiatrists are available to low-income families. Many free programs were only available to patients over the age of 18, or under the age of 12, mostly because this is where the research money is focused. With the addition of Medicaid coverage for my kids, I tried my search again. The results were even worse. In July of 2012, a study in Health Affairs showed that 56% of psychiatrists will not take Medicaid patients. This rang true for me, and even more so today. I was only able to find four Psychiatrists in the entire state of Georgia that accepted Medicaid. You can imagine the wait time to see one of them.

Not wanting to give up, I went online to my insurance provider’s website to search for help. My frustration increased with each query as I was shuffled from website to website. Information was poorly organized, much of it not even current, and redundantly listened on each website. Holes in the information were filled by sending me to another source that still did not give the information I needed. Eventually, I found myself going in circles. Why was this so difficult to navigate? If the state spent as much care designing their Medicaid website as they did the state lottery website, I could have cut at least 15 hours from the 20 I spent looking for services.

Georgia Lottery website vs. Georgia Medicaid Support site

I learned that I could request a mental health evaluation from my primary care physician. So, I contacted the PCP listed on my insurance card. Despite my card being only one month old, the PCP I was assigned no longer accepts Medicaid. I started calling every person I knew looking for a recommendation for a PCP that could handle a patient with autism. Every recommendation made would not accept Medicaid.

Now, I was no longer frustrated, I was enraged. Where was the help? Every Doctor I called said, “take him to the emergency room.” We had been there. The ER is not a long-term solution for managing and rising above depression. Desperate, I contacted every autism organization I knew in Atlanta, many of which I currently or formerly served as a board member. None of them took Medicaid.

Breaking Down

I went to the special needs school where I work as a music instructor on a Tuesday morning in January. Sleep deprived and feeling defeated, I wandered into the front office. The door was closed, but I remember opening it anyway, something I never did. I do not recall the temperature that day, or even if it was sunny. I only remember that I felt cold.

The head of the school and one of the board members was sitting in the office. I must have looked awful because they seemed to know I was in crisis. I told them how I was struggling to keep my own autism in check as I fruitlessly searched for help for Jacob. After I told them my story, they were there to comfort me and immediately went to work on solutions. They asked if I wanted to go home. I said I did.

Before leaving, I wandered upstairs to one of the classrooms where 2 of my music students spend their day. This classroom works with mostly autistic students, some non-speaking, where they practice using RPM to communicate. (RPM is Rapid Prompting Method, an approach where students learn to communicate by pointing to letters on a board, spelling out each word they want to say).

I approached the table where my students were seated, knelt on the floor, and told them I was not able to give them their music class. One of the other students knew something was wrong, and asked me if I was ok. I told them what had happened with my son, and I asked them for advice. I struggled to talk without crying, so one of the boys walked up to me and started petting my arm. Another girl spelled on her board that it was totally ok I needed to miss her lesson and she expressed concern for my son.

I thanked them and went home.

The Turn Around

Within a few days, the school had found someone to help us. Some dear friends insisted on paying for Jacob’s appointment and set up a session to happen at the school. It was not permanent, but at least was some time with a person to help us rise above crisis mode while we waited to see a therapist on a more regular basis. Now I just had to get him there.

It took Jacob 3 hours, but he pulled himself out of bed, through a shower, and out of the house. He wanted to be helped and was so grateful for the session with a real therapist. He sat with the therapist and tried to express his feelings to her. She gave him pointers and supported us both. In one single session, Jacob was already starting to feel a sense of hope. It only took one session, one person to show they cared. Someone who had the energy, and the education, to offer a fresh perspective.

The next week, I went back to work. Jacob came to the school with me, craving a chance to get out of the house and into a fresh space where he felt safe. Little did I know that a wonderful, beautiful surprise awaited us there. I went to the classroom upstairs, and I was greeted with enthusiasm. The teacher handed me a construction paper envelope with Jacob’s name on it and asked me to give it to him. “He is here with me today,’ I told her. They were very excited.
This class of autistic students had spent time in their busy schedules brainstorming about Jacob’s problem. At the end of the session, each student used RPM to write Jacob a personal letter. Their words were beautiful and insightful. Some of the things they said were;

“…the name of the game when you have sadness is losing yourself for a while. You will find yourself again.”

“…those that love you don’t care about your mistakes. They only care if you are ok.”

“…the single most difficult thing is feeling alone….You are not alone.”

“I hope you can come [to our school] so you can see what having supportive friends is like.”

“We should invite Jacob [to our school] so he will also see the wonderful things we experience when we are together.”

I was overwhelmed by a feeling of belonging and generosity. These students were trying to help us heal, and none of them had ever even met my son.

Empathy

Jacob accepted their invitation to visit class. He spent most of the afternoon with them, learning and sharing. On the way home, Jacob smiled and laughed.

Jacob often spent time in withdrawal when enrolled in public school.

He told me how great his day was and how he loved being around the other students. He had found his tribe.

In a public school setting, the only kind of school I could afford for Jacob, students like the ones that helped Jacob would have been separated from him. You see, in most educational settings, the students seen as having more “severe” autism are not integrated into the regular education environment. Students like my son, who are seen as “higher functioning” are given support in the regular education classroom. Even when pulled out to be around other ASD students, my son was placed in a classroom where he had to focus on developing his social skills, to better fit in. My son fits into the classification of students that are seen by the public education system as “normal enough.” Though the term they use is “least restrictive environment.”

Jacob never had an opportunity to coexist with other students on the spectrum, at least in this broad of a context, and in an environment where the students were free to be themselves. When given that opportunity, Jacob started to see his own traits in these students, helping him to feel a sense of belonging. It did not matter to Jacob that he was verbal and they were not. It did not matter to him that each of these students had their own tics and stims, and sometimes those tics and stims made them loud. He understood them, and he knew they understood him.

We are still waiting for a regular therapist to see him, and we still keep getting turned down by medical doctors to act as his Primary Care Physician. One Tuesday a month, Jacob gets to say hello to his new friends at the school where I work. He looks forward to it and talks often of the things he will share.

For years, I have listened to Neurotypical people tell me how people with Autism lack empathy. I see newscasters and politicians spouting on about mental health everytime there is a mass shooting. I have even been accused of not truly knowing what love is. But while the widely Neurotypical medical world turned us down in our darkest hours, while the programs that were supposedly built and funded to support people like my son and me couldn’t help, it seems the biggest lesson in empathy came from the population of people who aren’t supposed to have any.

We must build a culture of inclusion. The Autism community is screaming, and the world must no longer act deaf.

Continue to Part II