What was your life like prior to being in a program?
I grew up in the Pittsburgh area of Pennsylvania. My family and I were very religious. My first experience that really sticks out to me as being different was being left alone at the park and then a neighbor called the police to report neglect; after that I was locked in my room for hours (while both parents were gone) and then another few times left by myself in the backyard with no one home. I remember going to a Christian preschool and struggling with the academic expectations of the school. For example, I didn’t know the alphabet. Eventually, I was kicked out of my initial preschool, and I then attended a second one.
By the time I went to kindergarten, I had switched over to public school. Kindergarten went smoothly for me, with the exception of one strange comment I received on my report card– the teacher noted that I was “trying too hard to make friends with the other students.” In hindsight, reading that comment back as an adult, it occurs to me that it is in line with something sad that is commonly said about autistic children “that they don’t play correctly.”
In first grade I was officially placed in a specialized reading class to help me catch-up to grade level expectations as I was a little behind, the time I was in second grade, I was academically strong in all subjects with a particular propensity for language arts. I was sent as the representative from my elementary school to compete in a special science fair. Again, I do feel that in hindsight,my teachers pushed me towards the sciences as a reaction to not quite knowing how to handle my undiagnosed neurodiversity. Being particularly strong in the sciences is actually a stereotype frequently placed on autistic individuals.
My mom volunteered as a lunch-aid at the public school I was attending. Generally, the school had a policy that teachers were supposed to share with parents about student issues on a need-to-know basis as it pertained to their children,but because my mom was in and out of the school frequently she witnessed some of my social interactions first-hand. At the same time, teachers hesitated to tell her the full extent of the bullying and isolation I was experiencing from my peers. This included trespassing by them onto my family’s property and vandalism; even after they were confronted by the police for their behavior they continued and blamed me for their actions.
During my elementary school years it was common for me to be confronted by other students for “doing things the wrong way.” I found myself frequently asking “what exactly am I doing incorrectly?” Oftentimes, instead of responding to that question, the social interaction would escalate into the other child insulting or making fun of me. On certain occasions, this even occurred with parents and other authority figures present and chaperoning. It began to feel like some sort of cruel game. I felt like I had to try to figure out what was going on in these social confrontations without ever really understanding the full context. Was I just being socially awkward? Was there a specific reason other students didn’t want to be my friend? It felt very isolating.
On one occasion, I remember I repeatedly asked a teacher for sunscreen while we were working outside, but she felt I was being dramatic and perhaps inconvenient, so as a result I had to later go see a doctor for treatment of second degree sunburns.
Can you talk about your middle and high school experiences?
Middle school through the start of high school was a rough time for me. I continued to feel isolated from my peers and I endured sexual and physical abuse experiences on public school grounds and on school busses. At 16 I finally received my first mental health diagnosis. “General Psychosis/Mental Illness.” I’ll tell you the story of what happened.
On the very first day of 10th grade my teacher sent me to the principal’s office because she felt I was acting strange. Given that this was the first day of school, this teacher had never met me before and therefore had no baseline of what my normal behavior even was. She presumed that I was on drugs or alcohol. I was not. However, I went to the office without argument.
The principal called my Dad and asked him to drive me to a local hospital, so that I could receive the blood alcohol test that the school had requested. Looking back, that was rather discriminatory. In my Public School district there were kids who came to school high every day who were never sent to the office and never sent to the hospital for drug tests.
They sent me to the hospital. When the blood alcohol test came back normal, the hospital ran a brain scan. The brain scan also came back normal.
This is where things really started to spin out of control. Without finding any tangible evidence of anything being wrong with me, the hospital sent me to an inpatient facility. A psychiatric ward.
Your story differs from a lot of survivors in that you experienced trauma at the hands of an inpatient facility rather than a residential behavior modification program. What was your experience at that facility?
At the psychiatric ward they immediately put me on high doses of two different powerful medications. I was placed on 500 milligrams of Depakote. Depakote is an anticonvulsant that can be used to treat seizures, or manage the manic phase of bipolar disorder. It can have serious and sometimes fatal side effects–none of which I was informed of prior to being put on the medication.
The other medication was Risperdal (Risperidone),which has since been taken off of the market because of the side effects. It is an antipsychotic medicine that changes your brain chemicals and was used to treat schizophrenia, bipolar, and irritability in autistic children.
I was never informed of any potential side effects, and I was given these two meds everyday for three weeks.
I started experiencing side effects of the medications I was being forced to take. I felt like I was lactating, but the attending doctor convinced me that my perceptions were crazy. My side effects were written off as a symptom of my diagnosis or condition. Feeling like I was lactating but being told that that was a physical impossibility. Complete gaslighting. Years after my release it became public knowledge that lactation in men was one of the primary side effects of the medications I was on. I wasn’t imagining it.
One of the most striking aspects of my time in the inpatient facility was that all of the teenagers in the ward were on the exact same medications regardless of our specific and individual diagnosis. We were all on Risperdal and Depakote. They also had many of us on chemical restraints, which were medications that caused your muscles to get really stiff and it made it difficult to move. Under the Olmstead Act which protects people with disabilities, individuals are only to be restrained like that if they are being violent towards themselves or others. However, every child in this entire program was on the same medications– regardless of whether we were acting violent or not. I cannot emphasize enough how strange it was to me that all these people in the ward had different diagnoses, and yet we were all on the same drugs, and most of us on chemical restraint as well.
What if you had refused to take the drugs?
The alternatives to taking the drugs were to be forced into a straight jacket and made to sit in the dark isolation room.
So what was your official diagnosis?
It was strange how the psychiatry worked at the inpatient facility. First, they prescribed me the drugs and then after I was already taking the medication they finally did the actual diagnosis. Then the doctor asked me questions about how the medications were working and affecting my “condition.”
Initially, I was admitted for psychosis, but my diagnosis constantly changed. Like I said, my first diagnosis was “General Psychosis/Mental Illness,” but the doctor at the inpatient facility said he didn’t think I had psychosis.
They officially changed my diagnosis to Schizophrenia. By the time I was in outpatient treatment, they had changed my diagnosis to bipolar and maybe mild autism.
My brain scans were normal. My IQ test results were normal.
My theory is that mental illness is a result of trauma. In my case, I think my diagnosis- whatever it was or is– is just a manifestation of trauma I experienced when I was younger.
There is a premise in psychology called “Theory of Mind.” Basically, the idea is that typically individuals have a general awareness of what other people are thinking and feeling. They have the ability to understand and relate to others. For a long time, I didn’t have this ability. I still don’t have the ability to pick up what other people are thinking,and often I assume that other people can’t know what I’m thinking or feeling either.
A decade after my institutional experience, I received my adult life diagnosis of autism.
What impact has taking those drugs had on you?
Well, the initial impact of the drugs was that it was the first time in my life that I developed suicidal thoughts.
Over time, I’ve also been impacted by muscle loss as a result of the drugs. I started having shoulder dislocations in normal day to day activity. When I was 16 right after I got out of the hospital, I was taking a nap and I rolled over and dislocated my shoulder.
I had to get surgery.
The orthopedic doctor noted that this sort of low impact dislocation was really abnormal for someone my age, and ultimately we believe it was a side effect of the drugs I was given back at the inpatient facility.
Could your parents come to visit you at the facility?
My parents were allowed to come and see me, yes.
The inpatient program was running on a point system, similar to many of the residential treatment programs in the TTI. I would try to follow the rules to earn points, so I would be allowed privileges such as going outside.
You had to sit in your room the entire day. A staff member would sit outside your bedroom door and watch you and take notes. I would sit and read the Bible because it was the only book I was allowed to have in the room. Later, after I left the facility, I requested my records. Written in the paperwork they described sitting and reading the Bible as a problem behavior. Basically, everything was described as a problem behavior and negatively impacted my ability to earn points. I was originally supposed to be in the facility for two weeks, but my stay was extended to three weeks for no apparent reason.
When my parents came to visit the staff acted as if I were just casually allowed outdoor time. They told my parents, “Yeah, he is allowed to go outside with you.”
When I was discharged, I was sent to an outpatient program for a couple of months. I would have to visit my doctor and a social worker once per week.
What happened after you were finally back home?
For the most part, life went back to normal. I went back to living with my family. I went back to my regular public school. Honors student. Graduated on time and went on to attend higher education and graduate school.
I did experience some discrimination later in life as a result of my neurodiversity.
When I was attending Geneva college, I received a letter from my professor that said I had to go to counseling or I would face expulsion. The reason provided for the mandated counseling was that I was smiling at inappropriate times during conversation in class. He also discriminated against me in his grading as well. Meanwhile my RA got drunk while he was supposed to be working on duty and he received no such threats from the administration.
In 2014, I was 25 years old, and I was pulled over while driving and then arrested by the police for “looking and talking like I was high.” They gave me a road test, and I passed the test. They took me to the hospital for a blood test. The nurse checked my vitals, and I was normal. I had to stay overnight at the police station. The blood test returned normal, and finally I was released from the station. Charges were dropped.
In 2018 I was working as a bus driver at a school for autistic children. A teacher standing about 30 or 40 feet away from me saw me walking to my bus, and they claimed that I looked like I was on drugs. The entire interaction was caught on video surveillance cameras as a safety precaution, so my terminal manager and regional manager were called to watch the video tapes of me driving the bus. They determined that I was acting normal, but they still requested a drug test. It came back negative.
As a truck driver, I once had the experience of making a delivery at a residence and then when exiting her driveway onto a narrow street I bumped the pine tree branches that were hanging over into the road. The neighbor came out running and screaming, he picked up the tree branch that had broken off, hit the truck with it, then threw it toward my customer in her yard, then opened my cab door to try to get af me and then he hit the customer on the head after she told him not to enter my truck. The police were called and I had to make a statement and he was arrested for assault charges. His reason for his actions was that he didn’t think I could drive the truck (which is a common stereotype of autistic people that they are somehow unable to drive).
I have definitely felt targeted as a neurodiverse person.
I don’t know. Maybe it’s the way I talk or the way that I look?
What is life like now for you?
I live at home. I work as a truck driver. I do a lot of volunteer work to help disabled people.
I’m traveling to DC in May for the Stop Instiutitonal Child Abuse Act.
Do you resent your diagnosis? Do you celebrate it?
I spent most of my 20’s being pretty upset about what had happened to me. In my later 20’s, I received my adult life diagnosis of autism and began receiving Transcranial Magnetic Stimulation (TMS), which was helpful to me in that it numbed the traumatic memories I carry. Although the TMS has allowed my mind to go numb to the trauma I experienced, I still hold that trauma in my body.
I used to have really strong emotional reactions. Primary trauma and secondary trauma. March 1st was the Disability Day of Mourning, which is meaningful to me personally. I grew up attending church. I would go to men’s breakfast events at my church, and there were two boys a little younger than me who also routinely attended. They were autistic, and I related to them. They were similar to me in many ways. They were killed by their mother. She drowned them in a bathtub. I have a lot of secondary trauma from events like that.
A lot of discriminatory comments and interactions that happened to me in the workplace have ended up being more traumatic than my interactions with the police. So much of the judgment of the way my neurodiversity presents feels like a defamation of my character.
What do you think needs to change?
A lot of it is enforcing rules that are already in place.
Especially with regard to physical and chemical restraint like the ones I experienced in the psychiatric ward. Additionally, public schools are supposed to protect students from verbal sexual and physical abuse. It’s against the law for them to not protect students, but I was rarely protected. When I would try to get help, the principals would tell me it was my fault I was being mistreated.
There needs to be more training and awareness around how to help and interact with autistic people, not just for people working in academia but in general.
It was hard for me to find any work after I graduated from college. It was hard for me to deal with situations of unique discrimination in the work place. It was hard for me to deal with the police thinking I was on drugs while I was completely sober. There is nothing that prepares you for these interactions.