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.

Don’t let your Autism keep you back from fun things, persevere!

Many say that having an autistic individual close to Fireworks could cause utter chaos! In fact, I have seen numerous suggestions and reminders to be sensitive to individuals on the spectrum by being considerate of their needs during this noisy holiday. I am learning slowly not to let my Autism define me in the life of me, but define what Autism is.

One time in my life, the small town I grew up in was having a firemen’s carnival. It had came to the point they couldn’t set off fireworks in the park for one reason or another so my grandfather decided to allow them to set them off on our property one year. I was of school age and all I can remember is screaming and crying. I hated it and wanted it to be over, while it was a very nice display, I ruined the evening for our family by what I now know is sensory overload.

Fast forward to 25 years later, I am more understanding of the triggers. Anyway, last night I had went to visit my mom and dad and we were scrolling our phones while I come across the Facebook page of our city’s mayor who said that fireworks would be on tonight.

Now ever since I was a kid I remember sitting on our front wall watching the fireworks from afar, about 3 miles away. However factors that have decreased the ability to view them have occurred over the years. First, trees have grown in the course of the 30 years ago and second, the site where the fireworks are displayed moved to a lower elevation.

Nonetheless, while the fireworks were scheduled to go on, It had begun to rain to the effect that we received weather warnings on our phones. So we didn’t talk about it and I worked on my ancestry on the phone until dark, then Mom asks me if I want to go in town to watch the fireworks? WHAT? NOISES, CROWDS AND PEOPLE! While I am apprehensive about going, I remember that I have my headphones for a coping mechanism and that I could get some really good video for my Facebook page. So I agree with my mom and we head into town.

We park in one of the city’s parking lots and head out on the bridge overlooking the river. We patiently wait while we are surrounded by several spectators, even while there is a festival going on there appears to be some sort of police activity because we see law enforcement and vehicles entering the area of the festival, nonetheless I am just coping by listening to my music, then the fireworks begin. I am not startled, but am enjoyed by the amazing display that is brought forth as well as the great playlist that I have selected earlier this week on Amazon. Anyway, I focused All 16 or so minutes on the videography of the fireworks.

After the fireworks, mom took me home and I go to bed. This morning I got up and the first thing in my mind was to edit the video, which I did and it was one of the best ever. My advice is this, don’t let Autism hold you back from your hobbies you enjoy. Adapt to the environment that is comfortable for you so you can maximize your potential to your fullest ability. Don’t let your autism define you nor dont let it keep you back from something in the end mission that may be a good idea to do, such as fireworks. Now would I have even done this 20 years ago! No WAY! But I have found a huge way to cope and sometimes daily.

PS: The video: https://youtu.be/pzjxSAfZQEQ

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 #13 – Bullying is a public school crisis that has been occuring for decades. Technology.

Bullying. It’s been occuring for decades and decades. We see it portrayed in the scenes of the film Grease Where a member of the T-Birds has a shocking device in his palm and shakes the hand of a nerdish looking fellow. Years later we have read and see in the book made film The Outsider’s of it occuring outside school.

Nonetheless it is prevelant and while there has been no bullying specific policy made until the turn of the last century, it was not so enforced and followed to the directed manner as it should. There’s the great model of Olweus. This model was enacted in several school districts in the area over the past few years and policies have been enhanced more recently to include reporting methods to make it safer and efficient for all parties involved.

However with advances in technology and the use of social media, it is becoming more and more public than ever before. Many individuals with autism are the victim of such bullying, seeking friendship and acceptance in society. A developing body and not understanding social ques is just some prevelant hindrances that those on the spectrum face often times daily.

Whilst this was once a late elementary /middle school occuring. It has grown to all levels of public education, including College. We hear about it in the media time and time again. The only reason I can think of it occuring in the middle years of public education is because of a complexity of developing bodies, the changing of clothes in locker rooms and other close contact instances like developing a relationship. I have since learned that a prior curriculum requirement, the need shower after physical education has been eliminated for both the safety of the students and staff involved.

My only example of technology as a motive of bullying was in Seventh grade (remember this was 1998.) I had a computer at home, However I didn’t have my own email address. A peer and I exchanged emails with each other. Later on that day when I got home, i received an email from him with a hyperlink. myself being naive opened the link and it was a homosexual pornographic image. I then learned to gain trust before exchanging emails with others.

In the twenty one years since then, we have become Facebook Friends and forgave each other of our differences as he now has two children and is gainfully employed. Also in the same time, technology has jumped leaps and bounds. We have smartphones, social media, Alexa, which her smart plugs and so much more. With it has came then bullying and the consistency of the necessity of upgrading school policy often.

In closing, individuals on the spectrum must develop the skills necessary to protect themselves in the public eye to prevent seriously and potentially embarrassing and harmful instances from happening. Tomorrow we will close the week with issues in physical and mental bullying.

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.