Tom and Jackie’s Story
May 26, 2021
We would like to first present our son’s early childhood development as a way to introduce to the reader the lifelong struggles for those on the spectrum, and their parents struggles raising someone on the spectrum…
Our son was born on March 31, 1986. The beginning of our son’s story is also the story of our family, a school system, and the medical and psychological professionals struggling to understand our son’s deficits.
Our son was colicky, cried often, and digestive issues frequently resulted in episodes of projectile vomiting. He did not tolerate efforts to physically console him. As such, it took a tremendous amount of time and effort to calm him. The slightest noise or unexpected physical contact would upset him. As soon as he could crawl and eventually walk, our son was noticeably overactive and constantly on the move. We struggled to slow our son down and refocus his attention on meeting his basic needs such as eating and using the bathroom. He did not respond well to verbal cues as if he did not understand. For a time, we believed he was deaf. His hearing was tested and results were normal. He often used gestures or pointing instead of words to try to communicate his needs. Emotional meltdowns invariably occurred because we did not understand his awkward gestures. Communication with our son was a slow and tedious process. It was difficult for our son to sit still for a period of time and maintain eye contact.
As a child, our son would frequently become overstimulated due to the amount of people and noise associated with the large family gatherings. In response to this over stimulation, our son would often cower in a corner of the room in a fetal position. For our son, mere skin contact was painful. Our son was rarely able to sleep through the night. Mom would typically spend at least an hour each night playing soft music and reading books to provide a quiet and calming atmosphere, often to no avail.
Though our son participated in play groups with neighborhood children, he lacked the social skills to fit in with his peers. This frustrated him and he soon began to display self-injurious behavior such as head banging as a coping mechanism. He began to withdraw into himself. Instead of interacting with others, he preferred to take his toys apart and examine how they were made. He seemed to feel better in his own world, free of awkward and uncomfortable social interactions.
Preschool was the beginning of many social difficulties that our son was about to encounter throughout his life. The preschool teacher told us that our son seemed to be in his own world and had limited interactions with his peers in the program, preferring to play with certain toys instead. Mom eventually realized that our son’s persistent social and academic struggles required her constant attention. She quit her job to help our son navigate a world that seemed unforgiving to his developmental disabilities.
Around the age of eight, after noticing our son for several months display vocal and psychical tics, we had our son evaluated by a neurologist who diagnosed him with Tourette’s Syndrome.
In the fourth grade our son’s education plan was reevaluated and the evaluator due to a gut feeling she had, tested our son for mathematical matrices which is the ability to sequence numbers. He scored at the college level for mathematical matrices and was found to be in the superior range of nonverbal intelligence. His evaluator commented that “Your son’s brain is wired and operates like a computer.” However, he was also shown to have a 19 point spread between verbal and nonverbal reasoning/visualization which is not that common.
However, each new school year brought with it ever more increasing stresses for our son and concerns for us and what we can do for him. By the start of the second half of the fifth grade school year, the teacher noted that our son often sat and staring into space, ignoring directions and unaware of what was going on around him. Mom finally suggested it might be in our son’s best interest to pull him out of public school and home school him. Mom and dad decided to observe our son in the classroom, which confirmed our belief that we needed to make changes.
Around the middle of 1997 our son was diagnosed at the age of eleven with Asperger’s Syndrome, just three years after the diagnosis first appeared in the Diagnostic and Statistical Manual. He had had many different diagnoses before that one as various professionals struggled to explain his odd presentation of symptoms. For our son to have been diagnosed with Asperger’s Disorder so early on in the history of its clinical usage certainly demonstrates that his case was an obvious one to someone who was aware of the relatively new diagnosis.
In the year 2000 we prepared to have our son reenter public school. We appealed to our state’s protection and advocacy services for students with mental disabilities. Together we prepared to have our son’s reentry by teaming with a very dedicated advocate from this advocacy service and our son’s developmental disability case manager. We eventually had seven pre enrollment IEP meetings totaling 14 hours with education counselors, special education teachers, principals and vice principals, a special education case manager, as well as mainstream educators.
There is so much more that we could state about raising someone on the spectrum… so many confusing, frustrating looks from family, friends, teachers. Lost friendships…our son’s, and our own friendships. Why? Because our son didn’t “fit in”. We slowly got used to this rejection, we learned to live with it. We were for the most part respected in our community. Even complimented for our parenting efforts raising someone on the spectrum. Meaningful friendships with other parents are forged as a result of their children’s friendships with their peers which is very difficult for a child on the spectrum.
Fast forward to 2012. So many countless sacrifices were made up to this point. And they all seemed to have been worth it…our son had graduated with an associate’s degree 6 years earlier from a local technical college. He struggled with full time employment for that 6 year period but, just recently landed a full time position in his field.
Every Tuesday Mom and Dad attend a church service. We were on our knees giving thanks for all the progress our son was making. We left the service at 6pm. Just two hours later we were all in handcuffs.
We were in our family room watching TV when we heard a loud bang on our door. Our 16 year old daughter answered the door. Men with helmets dressed in camouflage and black boots, bulletproof vest, brandishing assault rifles and glock pistols rushed in. Outside, neighbors watched in horror as four men ran to the four corners of our lot.
AS IF WE WERE THE MOST FEARED, MOST DANGEROUS FAMILY IN THE NATION.
Our son was arrested for possession of child pornography. He was taken into custody and charged, and inexplicably released the very night of the raid, totally free with no restrictions of any kind…for the next three and a half years!
Our daughter was traumatized due to the raid on our home. She began to miss school a lot. Her grades started to fall. We sought counseling for her. Shortly thereafter, with mom at her side our daughter revealed to her counselor the raid on our home. It turns out that the counselor works for a counseling service that also operates a state accredited counseling service for sex offenders. We suggested to our son that maybe he should consider attending a service like this. Our son choose to get help and attended weekly sessions over a three year period. Towards the end of his sex offender treatment he was finally arraigned and plead guilty to a lesser charge, due to a strong Asperger defense. His prosecutors agreed with our son’s defense attorney to three years probation. No incarceration.
Our son’s judge did not care about this plea agreement, our son’s struggles , or his very well documented disabilities, the rare occurrence of someone receiving sex offender treatment BEFORE he is even arraigned, and most importantly, the pre trial psychological report administered by a forensic psychologist that had determined that even though our son was 25 years old, he had the social adaptive skills of a 6 year old. The judge sentenced our son to 3 years incarceration.
In the final analysis, our son is not a criminal. He does not possess a criminal mind. He simply is a person who was born with a developmental disability that created for him great difficulty in understanding the nuances, the gray areas, the complexities of his sexuality. He wanted so much to be a part of the neurotypical world but was not born with the ability to participate in it. So, he turned his vulnerable mind to a world he did understand. The cyber world.
How could any parent ever imagine that such heinous material is so readily available on the internet? Our criminal justice system has turned our life into a nightmare. Our developmentally disabled son is now in prison. What is it like for a DD person to be incarcerated? Here is just one of many emails from our son on what he is challenged with daily in prison:
Yesterday was a rather bad day, Another inmate has been bullying me a bit, slapping me on the belly and asking stupid questions and at lunch he was pulling and shoving me and when I asked another inmate where someone was and I apparently I was interrupting him while he was talking to this annoying inmate and that guy followed me to the ice machine to ask what my problem was. It was all rather aggravating! I guess there will always be bullies around here.
For someone with a developmental disability prison is the very worst environment to be placed in. You are surrounded by inmates all the time and there is no private time. It is a very unnatural social environment. Currently, our criminal justice system uses punishment as the primary rehabilitative instrument in it’s “correctional” prisons. We ask the reader: How do you punish a disability away?