A Sibling Voice for Low Verbal Autism: Afraid Of The Dark
Recently, I spent nearly four hours discussing autism with someone functioning at the high end of the spectrum. This person could not grasp how my older brother Anthony, 21, could have “low verbal” autism with no conversational skills. I am 18, a rising senior in high school, and Anthony’s only sibling. While this person’s verbal skills seemed impressive, I could not make myself understood. To this individual, merely being verbal implied conversational skills. I did my best to explain Anthony’s limited ability to formulate spontaneous speech citing many examples, but I could not sway their opinion. This was a sobering experience that left me in tears. Many times in my life, I had been asked to explain my brother’s condition, usually with scrutiny. This lack of understanding makes me afraid for Anthony, and the societal expectations placed upon him.
I was asked to respond to a news article from the Washington Post dated March 13, 2011: In VA. Assault Case, Anxious Parents Recognize 'Dark Side of Autism' by Theresa Vargas. In this article, Reginald “Neli” Latson, 19 with Asperger’s syndrome, was found guilty of assaulting a law enforcement officer, and it was recommended that he spend 10 ½ years in jail. This article described the concerns of parents who have aging children with autism, and described the aggressive tendencies many families suffer through. Parents were fearful that their adult children with autism would fall victim to a justice system that they do not fully comprehend.
The article described an unfortunate scenario where some elementary school children saw Latson waiting alone outside a public library, which was closed. They thought he looked suspicious and might have a gun, and alerted a crossing guard. The school went into lockdown, and School Resource Officer Deputy Thomas Calverley approached Latson. There was no gun, and the children later reported they never saw one. Calverley testified that Latson refused to give his name several times, and became aggressive when the deputy grabbed him and said he was under arrest. Calverley bent Latson over the hood of a car, and the two began wrestling and fell to the ground. During the struggle, Latson flipped Calverley hard on his back hitting his head on the pavement. According to reports, Latson hit the deputy several times, took his pepper spray, and shattered his ankle. Latson's attorneys offered an insanity defense stating that Latson was diagnosed with explosive disorder, and attention deficit hyperactivity disorder, and could not control his behavior because of an "irresistible impulse." The jury found Latson guilty of four charges including assault of a law enforcement officer, and wounding in the commission of a felony. According the official blog for Autism Speaks, the judge accepted the plan proposed by the defense for hospitalization at a Virginia psychiatric facility for several months followed by intensive services at the residential school. The jury’s sentence of more than 10 years was set aside in favor of an imposed two year period of incarceration, with the remaining eight years “suspended.” That meant that the remaining 8 years could be imposed if Neli did not cooperate with the terms of his probation.
Reading this story made me horrified to think that people with autism could be locked away for as much as 10 years and may or may not understand what they had done. As more people with autism are aging into adulthood, this scenario will become more common. With autism numbers rising, law enforcement needs to be knowledgeable about the spectrum of autism, sensory and communication challenges, and not be so quick to arrest someone that resists giving their name. Law enforcement officers need to identify a person with autism more readily, and approach the situation more delicately. Many people with autism suffer sensory issues, and would resist being grabbed. My brother Anthony is mild mannered and not especially aggressive, but I could imagine him fighting to escape an officer if suddenly grabbed. While Anthony has a young child’s view of what a police officer does, he does not understand the concept of being arrested, and the consequences of resisting. Even if not normally aggressive, a person with autism could become agitated and physical in an overwhelming situation. While simply trying to escape something unpleasant, they might be perceived as resisting arrest.
Anthony has excessive echolalia (rote repeating of dialogue) and OCD. I am always fearful in public that someone will get irritated with the noise, and confront my brother. I am not confident that strangers will be tolerant that Anthony has special needs. My brother can’t report on his own behalf, and would be vulnerable to abuse. In addition, false claims could be made against my brother, and it is my concern that law enforcement might give more credence to a verbal reporter over a non verbal one. Because of this, we never leave my brother unattended. We need to mediate for him in all situations.
My family has always been concerned for Anthony’s safety at the hands of the public. As a result, Anthony is never left unsupervised. My father was especially concerned after reading about the fatal beating of Kelly Thomas, a homeless man with schizophrenia and a history of mental illness from Fullerton, California. While investigating a report of vandalism, law enforcement officers discovered Thomas who was shirtless and disheveled. Initial reports claimed that Thomas had been combative with officers, however the police department confirmed that Thomas was unarmed, and the only one with significant injuries. Orange County District Attorney Tony Rackauckas used digital audio recording devices carried by the officers, and surveillance video from the Fullerton Transportation Center to show Thomas did comply with law enforcement. Officer Manuel Ramos put on latex gloves and asked Thomas "Now see my fists? They are getting ready to fuck you up." Thomas begged for his life before being beaten to death. The video shows the officers repeatedly shocking Thomas, beating him with tasers and flashlights, and slamming him into the ground. According to a witness statement, Thomas was screaming "Dad! Dad!” Thomas was comatose when he arrived at the UC Irvine Medical Center. Medical records show that bones in his face were broken, and Thomas choked on his own blood. The coroner concluded that compression of his thorax made it impossible for Thomas to breathe normally, and his brain was deprived of oxygen. His parents removed him from life support, and Thomas died from his injuries on July 10, 2011. Officer Ramos was charged with one count of second-degree murder and one count of involuntary manslaughter. Corporal Jay Cicinelli was charged with one count of involuntary manslaughter and one count of excessive force. Both officers had pleaded not guilty.
This story haunted my father, and brought my mother and me to tears. I could not bring myself to look at the video. The photo image of Thomas after the beating was horrifying enough. My father, who is an adult educator, approached our local Sheriff’s Department and offered to develop free training to properly identify autism for law enforcement. He explained his concerns and my brother’s low verbal autism, and wanted to help officers with pre-engagement skills for those on the autism spectrum. My father’s goal is to make our community a safer place for Anthony. After all, the Law Enforcement Officer on duty at our high school is seen as a friendly, approachable adult by all of the special needs students. Anthony could never fathom such senseless brutality from a Police Officer. For Anthony’s safety, I allow my innocence to be eroded to ensure Anthony can keep his.
Natalie Palumbo is a high school student, younger sister to a brother with autism, and Contributing Editor for Age of Autism. Visit her art website at Deviant Art.
My 16yr old daughter was just arrested and put in jail for pulling a fire alarm in a residential facility she lives in and is facing felony charges.
Posted by: Fred | June 13, 2016 at 01:16 AM
Sadly enough, I have seen first hand what "disciplining" a (highly verbal) autistic child can be like. They have no idea what they are doing, they can verbalize by shouting, cursing, or lashing out with hands and objects. I have seen teachers, parents and other people trying to make a person who is autistic do what they think they should do. I cannot imagine what this would have been like for someone who is (low verbal) autistic. I can, however, see that both highly verbal and low verbal are one in the same with communication. It is just the extent to which someone can understand what they are trying to convey. I worked in a public high school with an autistic child. This child had triggers that were well known to those of authority. Sadly, it took my notes on the behavior of this child, to make people see that this child "should never have been mainstreamed" in the school and should have been attending a school that was more appropriate for the child's needs from the beginning. Unfortunately denial runs rampant with a lot of families of autistic children, as well as caregivers, doctors, and teachers. My favorite term is "differently abled." I teach it to my children. There are no bad children. Some do bad things; however, an a autistic child is not able to do bad things because there is no recognition of consequence. I have a highly verbal nephew who has Asperbergers. My children have been amazing with him. They "get it." I am amazed at the depth of your insight into the world of autism and applaud you and your parents for taking the time to find out what it is that can help your brother, instead of "fighting" a system that is truly broken. God bless you and your wonderful brother. I am delighted to say that I have met you both. Meeting you both has made me see more clearly how misunderstood the struggle with Autism is. Please continue to be the amazing person you are and huge hugs for your ability to be so loving and caring as well as an absolutely amazing artist and writer.
Posted by: Laura Johns | August 17, 2012 at 11:35 PM
The death of Kelly Thomas was so gratuitous and so horrible that it is hard to understand why it was only a second degree murder charge. It seems in law as it operates the helpless are fair game.
Posted by: John Stone | August 17, 2012 at 04:38 AM
My son, age 38, is minimimally verbal like the young man described and we also can not leave him alone in public because he has a complete lack of social skills needed to deal with people. He also speaks in a few words when he communicates and has problems putting sentences together.
We have a local transit system with special transportation buses for the disabled. When he was being sent to a daycare then he didn't have to present a ticket or money because the facility took care of that. But, when we tried transferring him to a day habilitation place, no one told him or trained him that he would have to take money from his wallet, the right amount at that, and pay the bus driver. He was still learning what a quarter, dime and penney were. Being unprepared to present the money, he pushed the bus driver in a futile attempt to get his point across that he didn't understand. Well, we were called that he would never be able to ride the bus alone again.
His caregiver didn't want to spend the day riding the bus to the dayhab with him and waiting there for the return visit, so he had to quit the daycare.
This opened the door for a day worker to take him out in the community daily, which is what I wanted anyway. He is still experiencing community things today; although, because he can't transfer to working independently it is not possible to explore work options. He has to be directed in every step of what someone wants him to do and would not be able to just work with natural supports.
It is true that most people don't understand. When he is around Asperger's he is just mute. They chatter incessantly around him.
Posted by: Martha Moyer | August 17, 2012 at 04:06 AM
Ugh- this is like a dagger in the heart. Natalie, you remind me of what I imagine my own daughter being- she is only 12 years old now but boy does she understand the struggles of autism. Her brother 7yo also is very low verbal. I completely get what you mean about having no conversational skills. We are very grateful for the verbal skills he does have because it helps us that we can know what snack he wants or that he wants a certain toy- he can request certain favorites. Other than those little tidbits, he is not verbal. We have no back and forth, he could not string a novel sentence together.
Unfortunately we have already been involved with law enforcement more than I'd like to admit. The first 5 times because of elopement and the police had NO idea about autism, whatsoever (since then they have been trained, out of necessity). The last two times, my son pulled fire alarms in public places- ugh. Once at his public school. I simply cannot explain to people (who have not experienced it) that it is NOT my son's fault when he pulls a fire alarm because he truly does not understand that it is wrong to do so. I have had people ask me how I punish him for this. They just cannot comprehend that a 7 year old wouldn't "know better" and they assume I just am not teaching him. I could explain it 100x times, write a social story, punish him several different ways and he would probably still pull a fire alarm. Like you describe with Anthony, the only real way is to constantly supervise every single interaction and in public to be within an arm reach. That is all we can do and it is exhausting. It's not even just the fire alarms, if a toddler gets too close, my son will shove him/her over. And I could tell him and punish him until the cows come home, he will still push the next toddler who gets in his space. I have had to learn the hard way that I'm not super human. I cannot make my son cooperate and not be autistic and instead behave like a 7 year old. Personally I sometimes feel the worst critics are other parents of special needs children. I have heard all kinds of comments about how "my son has autism and we just promised him xyz if he behaved and we followed *through* with consequences and we taught him blah blah friggity blah...." It. Does. Not. Work. Like. That. For. Low. Functioning. People.
My daughter who is 12 is terrified that he will pull a fire alarm again. When I was in the car on the way to picking her up from camp she texted me "watch B and the fire alarms when you come into camp" Breaks my heart. It shouldn't be like this.
Posted by: Kristine | August 17, 2012 at 02:13 AM
Thank you Natalie for your wise words. I know this scenario is so much a part of many of our lives. As a grandmother raising my now 14 year old grandson alone, I can totally empathize with your concerns. Even a very verbal child on the spectrum can misinterpet the actions of a police officer
and let's face it, most don't have a clue how to react to our kids. This is a worry I carry like 2 huge boulders on my shoulders--every single day.
Posted by: Maurine Meleck | August 16, 2012 at 07:27 PM
The article and the responses made me so sad. We must give non verbal and low verbal children and adults with Autism A WAY TO COMMUNICATE, A WAY TO BE HEARD AND UNDERSTOOD! We (as parent's caregivers and a community) MUST RESPECT what they express to us through words AND ACTIONS/BEHAVIORS.
We also need to continue to educate the police and those in power: lawyers, judges, etc... because until they have some basic understanding our kids are at risk!
I have worked at an Autism Service Agency since the spring of 1994. 2012 was the first year that we NEEDED to compile a list of criminal lawyers who had at least some basic understanding of Autism Spectrum Disorders due to calls from parents whose teenage sons had found themselves in trouble with the law.
What a sad statement on where we are heading.
Posted by: Jan | August 16, 2012 at 05:45 PM
There is one group of kids that never gets talked about--the siblings of autistic kids. They live with autism everyday. They have to deal with sometimes horrible situations. In the end, they love their brothers and sisters with autism. Their responsibilities will only increase as they get older and they'll have to be advocating for their family member all their lives.
They need to be recognized too.
Anne Dachel, Media
Posted by: Anne McElroy Dachel | August 16, 2012 at 05:39 PM
Well stated Natalie. Thank you for sharing your story. My 16yo daughter is nonverbal and can't answer many simple questions like providing her name or address. She's not at all aggressive, but might resist a stranger. If she ever was lost from the company of people who know or recognize her, I fear terribly the process our law enforcement or social services would follow to deal with her.
Posted by: Mark L. Olson | August 16, 2012 at 05:35 PM
Beautifully said, Theodora. And Natalie, thank you for an insightful article. I wish I knew how to bridge the gap. We need services and supports for those who are able to communicate - as well as for those who can't. We need services and supports for those who are able to get advanced training and jobs - as well as for those who can't. It is not an "either-or" situation; the needs may be a bit different, but they shouldn't be set against one another.
Posted by: Vicki Hill | August 16, 2012 at 05:32 PM
Natalie, your last sentence,"I allow my innocence to be eroded to ensure that Anthony can keep his," is very haunting. Your concerns are unfortunately all too valid and I am thankful for your families efforts to educate . Among other things your story shows how people at the high end of the spectrum should not be allowed to speak for all individuals with autism. Just the other day my mother was talking about a show she had seen where individuals on the spectrum were able to communicate with computers. I gently had to let her know, though, that many will not even be able to communicate with these tools.
Posted by: Jen | August 16, 2012 at 01:17 PM
In early August 2004, our son, Eric with severe autism and aggressions and no language skills was placed in an out-of-state residential center in Delaware (we live in NJ). In October 2009, we took Eric out for lunch and a train ride in the area thinking we doing something nice for him. Unfortunately he had a melt down on the train and attacked my wife, Helen and myself breaking my right thumb with his teeth. The Delaware police asked us if we wanted him locked up in a cell (and press charges) and naturally we said no, just that he would be returned to the residential center. Eric was returned safely to the residential center.
We took him out subsequently for lunch in early 2010 and unfortunately we had another incident and had to take him back to the residential center with a police escort. Since that time we visit Eric once every other weekend at the residential center and have lunch at the center only, never taking him out.
Eric will be 28 years old on January 17, 2013. Unfortunately, many adults with severe autism and aggressions and no language skills like Eric will wind up in a residential center. Sad but reality. I see kids in the residential center as young as 8 years old.
My own personal experience.
Posted by: Raymond Gallup | August 16, 2012 at 12:00 PM
Benedetta, my jumpy, flighty, eloping ASD kid practiced avoiding arrest by falling forward, toward me. I'd reflexively back off. Worked every time until he'd trained me that a gentle tap on the shoulder works best.
Posted by: Reformed arrester | August 16, 2012 at 11:45 AM
Theodora aka Tiffany
I could not agree more.
Posted by: Visitor | August 16, 2012 at 10:05 AM
Two years ago we took my son to a psych for some testing to know what has changed and what has not and for some understanding. .
This psych is suppose to be very good - the best in the region.
He does a very good name, and his name I have noticed is well known in psych circles of other professionals we have seen since.
This psychologist told me that many with aspergers and PDD-NOS does not see that there is anything wrong with them.
His expression was," I am just fine, thank you very much".
After thinking about this for two whole years - I have concluded this is very true. My son he sees none of his deficits in communication or how he deals with the public.
The police have always been the ones that has to deal in the end with those of society that are non compliant the best they can. Their approach has always been come in fast and be violent and rough before the other guy has time to think and possible fight back. Esp when you have small school children doing the reporting.
And then along came autism! Where coming in fast and rough brings out the worse. And I have noticed some of the small children with autism - they are clever about how to move in an unexpected way. In that area they are geniuses.
You go to grab them and they turn in a different direction than other kids -they turn toward you leaving the had you went to grab them with empty -- and toward your other hand that is usually carrying something or at the very least not expecting to do any work. You end up missing them completely and they are off doing what they will.
Posted by: Benedetta | August 16, 2012 at 09:44 AM
Natalie: Eye opening. Sobering. I see my son in your brother, and I pray. They know not what they do.
Posted by: Dan E. Burns | August 16, 2012 at 09:34 AM
Sadly, I also predict the frequency of adults with autism being incarcerated to go up. I hear all the time of close calls where someone from the public misinterprets the mannerisms of an autistic adult as suspicious, calls the police, and the police go in with guns drawn. If the autistic adult flaps their hands at the wrong moment, chances are the police will physically restrain him, which is then likely to escalate the situation. I'm currently (having trouble) reading Jodi Piccoult's "House Rules" which talks precisely about this subject, so your article is very timely.
Posted by: Jennifer Flinton | August 16, 2012 at 09:22 AM
I think that is at the heart of the issues that spring between parents and advocates. Because those of us on the other end of the spectrum lack theory of mind, we do not understand what it is like for those on the other end of the spectrum from us. We can still fuction, more or less, and enteract with those around us to some extint. We can speak for ourselves, can tell others how we feel (even though we usually don't because it is extremely difficult to get out).
We only understand our own situation. Because of that, we tend to think all situations are more or less like ours. We have no concept of what those on the lower end or thier family go through everyday. If we did, I don't think we would be so quick to stand up and judge and condemn parents for being so vocal about wanting to know the cause and wanting a cure.
It took me working for the state and becoming a part of those who serve people with disabilities to open my eyes to the otherside. It overwhelmed me, to say the least! The first time I walked into a Habilitation center, the first time I entered the home of a young adult's family, these experiences are burned into my memory. For the first time, seeing how serious, how awful these situations could be, changed my viewpoint, changed my world!
Because of these experiences, I will never again oppose or downgrade those who seek a cure. I will never again cast judgement on parents who are desperately trying to save their children. I make it my mission to talk to my fellows with AS/HFA, explaining what I have seen with my own eyes, and always at the end saying, I want you to have these experiences. I want you to see it with your own eyes. Then I want you to look into the eyes of these parents, grand parents, siblings, and the individuals themselves and tell them that they don't need a cure. That nothing is wrong.
If you have these experiences, and you can still do that, I worry for your soul.
I think the insults on both sides need to stop. The fight between the nds and us need to stop. What needs to happen is a honest conversation. Parents need to remember that inspite of our fuctioning, we are still on the spectrum. We act out of genuine love and concern for those like us, but we do it without fully understanding the situation. We need to talk with one another, talk out what one another's experiences are. We need to take them by the hand and give them up close and personal examples of why you act as you do and why it is so important.
Perhaps then we can band together and truly be a force to be reckoned with.
Posted by: Theodora aka Tiffany | August 16, 2012 at 08:58 AM
Thanks for the article Natalie. So sad I can remember several stories over the past few years, like this ...one of the worst outrages is perpetrated by the UK Government who have let Gary Mc Kinnon languish since 2002 …. Gary Mc Kinnon was indicted by a US court in November 2002, accused of "hacking" into over 90 US Military computer systems from here in the UK. ..( he was looking for UFO info)
Posted by: Angus Files | August 16, 2012 at 07:00 AM