Book Review: Demystifying the Autistic Experience: A Humanistic Introduction for Parents, Caregivers and Educators (2002)

Around the time this book was written the author’s name was brought up in conversation as “the one who got it.” Little did I know of 17 years of molding into the man I have become, and a unique 50 cent book in a thrift shop, I would discover that the book would make me get it more.

I was in an interdisciplinary meeting at the time, it was stressful we were about one year out of the RTF, about one year near the completion of High School, yet I was still in services that I now know were at thw time were excessive and not a proper fit given the age. However, in this meeting, a gentleman who was a represntative of the County Mental Health Office, and now serves in a more indirect role of my employment had mentioned the gentleman. Myself and my parents were skeptic and it even brought emotions in the meeting very deeply. However we would move on. By the way that county representative is acknowledged in the book.

Fast forward to two days ago, when I was reading the book, it tells of what we as individuals on the spectrum feel and how we want what we want, and how we express what we express it in the way we do, even if it may seem odd to others, however it is the way it is.

He explains several things that make sense to me. Like the adrediline and cortisol and the necesity to exert energy regularly to relive it as well as the stimming along with the person centered language and the importance of treating an individual on the spectrum for who they are although we are unique in our very own way, to see the entirity of the person as a whole and to have them feel as they feel in their own special way.

Many who have heard of Mr. Stillman have heard of his Wizard of Oz Obsession. As he got older it would be precarious to explain this to a friend, however he was allowed to keep his obsession, in a secluded private place in the home. This being said, any individual has the right to enjoy whatever it is to enjoy. For those who “age out” of that thing to the point where it may seem inappropriate, it is best to find a private place of the home and let that indivual visit that obsesion from time to time. We have to keep in mind this was before the internet came into play, which has made individuals on the spectrum grow their intellect by leaps and bounds. My parents had a conputer given to us by my late uncle in 1998, not many had a computer at the time, I cannot tell you how grateful I am to my uncle for donating that to us. Nonetheless, it has made me mold into my techonoligicla capable self that I am today.

Sometimes, we need to take a break from the Internet and social media and be thankful for the goof old pleasaure of life like the outdoors, friends, family, etc. We are grateful for the advances of technology, however it is important to get active and stay active in many activies that human involvemnt can provide.

Lastly in his biographical chapter of the book, he gingerly discusses his sexuality a bit. While 17 years after this book was published, this was a very heated are to discuss about individuals on the spectrum, i felt it was a necessary component to the whole picuture because sometimes you have no idea what that person feels until you ask them and heck, they may not even know. Yes, the LGBTQ community has come leaps in bounds as a whole, however discrimination still happens, as such I feel there needs to be openess to this subject in both sides of the Autism Spectrum Communities, both in the I/DD field and Mental Health field. Professionals are afraid to ask, training is needed for each and every professional and yes there are views that a person may have, but they have to put them aside to see what makes the person happy. Because once the persons close to them leave, they many not be happy with societal norms and want to believe what they want. We have made policies and statements about this in the governmental communities, however we need to “stick to our guns” in this effect.

The book was one of the best books on the spectrum I have read in a while.

Autism Acceptance Month Day#17 – Understanding when it is ok and when it is not ok

In 2018, NPR ran a series called “Abused and Betrayed” which highlighted the underreported statistics of sexual victimization against individuals with developmental disabilities. NPR found that individuals with developmental disabilities were at risk of sexual abuse at a rate of seven times higher than the general population. Many factors put individuals with developmental disabilities at risk for sexual abuse, including limited knowledge regarding healthy relationships and limited body autonomy.

In response to these alarming statistics presented in the NPR series, ASERT collaborated with the National Crime Victims Research and Treatment Center at the Medical University of South Carolina to develop the Be Safe Resource Collection. The goal of Be Safe is to increase the availability of knowledge and resources for individuals, caregivers, and professionals with the aim of prevention and intervention of sexual abuse and assault against individuals with autism.

To kick off this resource collection, ASERT created the Ask, Listen, Respect Pledge in 2018. ASERT called on family members, caregivers, and support staff to pledge that they will respect and promote the body autonomy of individuals they care for. Body autonomy is a right of all persons. It is the idea that individuals have a right to have a say about what happens to their bodies. This is especially important for individuals with developmental disabilities who may require support in self-care and daily living skills from family members, caregivers, and support staff. Promoting body autonomy is an essential first step to encouraging a positive and safe environment for all individuals.

The pledge focused on three important components. First, we will ASK an individual before touching them when providing support. Second, we will LISTEN to what the individual says and empower them to make choices about their body. Lastly, we will RESPECT the individual’s choice about their body. We also asked individuals to take the pledge by empowering individuals to make people ASK them for permission before providing physical assistance, LISTEN when they provide decisions about their body, and RESPECT their choice. In the second year of this campaign, we are asking individuals to recommit to this Ask, Listen, Respect pledge.

This year, ASERT will be promoting the Be Safe Resource Collection in honor of April’s Autism Awareness and Acceptance Month and Sexual Assault Awareness Month. The Be Safe Resource Collection aims to provide resources and knowledge to individuals, caregivers, and professionals about the prevention of sexual abuse and sexual assault of individuals with autism.

These resources provide information about the rates of sexual abuse and assault, as well as factors that increase risk for sexual abuse or assault. Resources also include tips on how to teach body awareness and body safety, information on teaching relationship building skills, and resources on how to identify and report abuse in children and adults. We have developed infographics, social stories, eLearning courses and other resource materials to make these concepts accessible for many audiences. For more information, check out the Be Safe Collection website www.paautism.org/besafe.

We encourage you to continue to the Ask, Listen, Respect Pledge! Click HERE to take the Ask, Listen, Respect Pledge and download the Pledge Card Today!

Autism Acceptance Month Day#17 – Understanding when it is ok and when it is not ok

In 2018, NPR ran a series called “Abused and Betrayed” which highlighted the underreported statistics of sexual victimization against individuals with developmental disabilities. NPR found that individuals with developmental disabilities were at risk of sexual abuse at a rate of seven times higher than the general population. Many factors put individuals with developmental disabilities at risk for sexual abuse, including limited knowledge regarding healthy relationships and limited body autonomy.

In response to these alarming statistics presented in the NPR series, ASERT collaborated with the National Crime Victims Research and Treatment Center at the Medical University of South Carolina to develop the Be Safe Resource Collection. The goal of Be Safe is to increase the availability of knowledge and resources for individuals, caregivers, and professionals with the aim of prevention and intervention of sexual abuse and assault against individuals with autism.

To kick off this resource collection, ASERT created the Ask, Listen, Respect Pledge in 2018. ASERT called on family members, caregivers, and support staff to pledge that they will respect and promote the body autonomy of individuals they care for. Body autonomy is a right of all persons. It is the idea that individuals have a right to have a say about what happens to their bodies. This is especially important for individuals with developmental disabilities who may require support in self-care and daily living skills from family members, caregivers, and support staff. Promoting body autonomy is an essential first step to encouraging a positive and safe environment for all individuals.

The pledge focused on three important components. First, we will ASK an individual before touching them when providing support. Second, we will LISTEN to what the individual says and empower them to make choices about their body. Lastly, we will RESPECT the individual’s choice about their body. We also asked individuals to take the pledge by empowering individuals to make people ASK them for permission before providing physical assistance, LISTEN when they provide decisions about their body, and RESPECT their choice. In the second year of this campaign, we are asking individuals to recommit to this Ask, Listen, Respect pledge.

This year, ASERT will be promoting the Be Safe Resource Collection in honor of April’s Autism Awareness and Acceptance Month and Sexual Assault Awareness Month. The Be Safe Resource Collection aims to provide resources and knowledge to individuals, caregivers, and professionals about the prevention of sexual abuse and sexual assault of individuals with autism.

These resources provide information about the rates of sexual abuse and assault, as well as factors that increase risk for sexual abuse or assault. Resources also include tips on how to teach body awareness and body safety, information on teaching relationship building skills, and resources on how to identify and report abuse in children and adults. We have developed infographics, social stories, eLearning courses and other resource materials to make these concepts accessible for many audiences. For more information, check out the Be Safe Collection website www.paautism.org/besafe.

We encourage you to continue to the Ask, Listen, Respect Pledge! Click HERE to take the Ask, Listen, Respect Pledge and download the Pledge Card Today!

Autism Acceptance Month – Day #15: Bullying, Abuse and Grooming by Trusted Adults

Continuing on with the daily discussion for Autism Acceptance Month, we will be talking about one’s independence and how it is for me and what I want and dangers that are out there. This will include topics for all ranges on the spectrum.

Recently,  I have seen an ad on Facebook for a “listening” system for low-verbal and non-verbal persons ont the spectrum. It realized the true reality of abuse by trusted adults and how commonplace it is. The example provided is that this mother purchased the device for her son who was transitioning out of public school and into a day program. She listened for the first time and discovered audibily that her son was being verbally abused to the point he was screaming “Call Mommy.” She came to the rescue and removed him from the situation.

With that ad on Facebook, it brought to light the instances of abuse by trusted bullying, Abuse and Grooming by trusted adults. I have sometimes been a victim of all three during my childhood. However, I have garnished the street smarts in my adulthood to defend safeguard myself from becoming vulnarable.

Looking at bullying, I have never been truly bullied as an adult but according to my last two posts of cyber and physical and mental form. Oftentimes individuals on the spectrum take things literally and as a result I get bullied from time to time both at my day program and in public. Another instance is where another individual spoke out for herself in a public forum and when I was asked for the opportunity to voice my opinion, in which I believe could make her case better, I was shut down by her saying she didnt want to hear from me. One last instance was when I made a nonsence jerk and a bout of laughter at that same day program a week later. Another individual (not mentally well) told me to “shut up” and ” what the f*** was so funny” It hurt my feelings to the point that I didnt want to return to the program after the Christmas Break, which I have been a part of this program since I graduated from High School. While I brushed off the first and last instance I provided, I cant seem to fathom why none of the staff stood up for me in the middle instance. Anyway the individual from the latter instance no longer attends the program, providing some relief. However, taking things literally is something I continue to struggle with constantluy

As for abuse, I have been abused throuhgout Junior High and the occasional corrective hit or two by my parents. It has been tramatic for me to some extent. Addiitonally, there was a time where I had a direct care worker feel the need to restrain me when he felt the instance that I would strike him or cause bodily harm. This, along with other elements of the situation caused me trauma to some point, something that I continually struggle with. In fact, I can not frequent three business in our town of 8,000 that he frequents. One time he touched my backside in a supercenter. This made me regress in therapy for sometime. While he was charged with falsifying a college degree, he served his sentence in a program that resulted in that charge being expunged. In more recent years, he received an award from our local police department for subduing a would be robber in a convenience store. I was apalled, but everybody needs their fifteen seconds of fame and I have had a good share.

He was also a big groomer. While he worked with several individuals, he took a certain liking in me. I would stay at his house while my dad had cancer and was in the hospital. He would buy me things and buy me soda and other things to make me feel good about myself. We would go to restaurants alot to eat. I continually fear being unethical with other trusted individuals as a result.

In closing, we need to be evident of the abuse that could occur by those who cannot properly tell you all that occurs. Many individuals that cannot advocate have their parents who is indeed their best advocate and knows their child best. As for being independent, skills must be occured for an individual to know the difference between right and wrong and how and when to say NO!

Tomorrow, we touch on a rather sensitive subject, bathroom usage. While it is not extremely graphic, the post will contain some unique topics that are prevelent in those on the spectrum.

Autism Acceptance Month Day #14 – Bullying is a public school crisis that has been occuring for decades. Physical and Mental

In the second half of the subsubseries,we take a look into the realm of bullying. Yesterday we looked at it in the form of advances in technology. Today, we look at the physical and mental bullying aspects.

As I begun yesterday’s post of bullying being portrayed in film. We also covered in the realm of Cyberbullying. However there is still a lot of physical and mental bullying occuring in not only schools but by adults alike. We’ll explore the adulthood bullying tomorrow.

We are ever made aware of bullying nowadays because of the previlance of surveillance cameras, cell phones and social media. While the eyes aren’t everywhere, it’s usage of technology makes it easier to make it public. Reasons for bullying can be complicated and cumbersome. The instigator may have a rough home life of lifestyle, as can the victim. A critical part of what can be an irritant in individuals on the spectrum is the simple fact that things are black and white, taken literally so to speak.

A flash back of this occurred to me recently. My family frequently dines out at an Italian restaurant in my neighborhood. It is a family owned business, of which their son is employed as a waiter. We have had several instances of him being our waiter. One of the occurrences, when we were making conversation when he came back to check on our meals. He said something I took serious. He then said you can’t ever take a joke. It brought back some memories of not only my junior high years z but my senior high years as well. It also brought forth the instances of where I answered questions posed to me truthfully, however they weren’t intended to be a so.

One familiar instance I recall was the point where I was asked the size of my genitals. I would honestly answer with the correct length and then be kicked in the leg. There were several situations where I was depantsed, hit, kicked, abused shoved in a locker and even robbed of my lunch money, all through no fault of my own. Nonetheless by the time I graduated from high school many of those instigators took responsibility for their actions and we ended the last two years of high school associating frequently.

I have seen some of my former peers after graduation and some I am even friends with on Facebook. However, there are some that have been incarcerated, some deceased and others that are constantly in the local media for one thing or another. Some sadly have completed a suicide and some have moved away.

Nonetheless I know I have overcome those days and look forward to the ones to come. I like myself for who and what I am, not what someone defines me. There’s a saying that goes I define Autism, it doesn’t define me.

Starting next week we’ll be discussing independence and the success and needs of that realm. Tomorrow will bring forth the issues of abuse, neglect and grooming of individuals on the spectrum.

Autism Acceptance Month Day #12 – The use of Force in Schools Today

Let me start off by saying that I have been out of public school for 15 years this year and while it was never brought up in great detail about myself being abused by a professional in my public school career. It is becoming more and more commonplace that this is evident, specifically in the autism community.

I only recall of one specific instance of abuse by an school professional that was brought to my parents attention by another parent who’s child told his mom she was abusing me.

It was first grade, then it was the first year of attendance in public school all day, since kindergarten at the time was half day sessions. Nonetheless, I had teacher who was different at best. Granted, I was experiencing unknown symptoms and would not receive the proper disgnosis until seventh grade. However, I was diagnosed with the all too popular diagnosis of the 90s, ADHD. Something I now realize almost 30 years later that I have struggles with regularly. Anyway I can only recall the instances of her yelling at me and throwing things at me, I never realized that she forcibly struck me. Nonetheless my behavior became severe and my mom being an true advocate insisted on me being transferred to other class in the school. Keep in mind that these were mainstream classes and there were only two. Additionally, her daughter was in the class, as a result she was transferred to another school in the district.

A couple of weeks later it was discovered by a student of that prior classroom that I was being abused by the teacher. Keep in mind this was 1992, no school in our district has security cameras. In fact the Christmas break the year prior our senior high was vandalized by school students massively. School board members were asked why cameras weren’t in the building. They stated they didn’t think it would be good. It would be some years later until all schools and buses would be equipped with such devices.

In retrospect these incidents must have occurred some time prior to removal because years later I came across a aritcle in a local newspaper were was dressed like a pilgrim taking about the history of America being founded. I recently wonder with all these instances occuring in the open eye as if the teacher had remorse for her actions towards me.

The irony of that situation is that two years later I would find myself with a highly tenured teacher who didn’t want to accommodate so I was transferred to an emotional support classroom. Unique to that I would see the first grade teacher as this was the school her and her daughter were located at. The paraprofessional would make me show her milestones, like learning how to tie my shoes for example.

Nonetheless, I have heard of instances of abuse far and wide since my occurrence almost twenty years ago. I get some peace of mind that the board of education closed the school a couple of years ago and couldn’t use it because it contained mold and had zoning restrictions. It was razed and last summer I walked to it and had a sigh of relief.

I will close saying that I know several mom’s of children on the Autism Spectrum who would do and advocate for the needs of their children, including my own mother who indeed is my #1 cheerleader. The saying goes you are your child’s best advocate. Nothing could be further from the truth, especially in my instance and I am indebted greatly thankful and appreciate it dearly.