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 #16: The Bathroom

NOTE: As part of this subsection for Autism Acceptance Month, we are exploring topics of independence. As such I feel it is necessary to discuss needs of the restroom and other related material. As such the content may be disturbing to some, however I do feel it is a very necessary element that needs brought to the spotlight. Reader Aware!

In Autism Acceptance Month we mostly talk about topics and milestones that are bright and sunny. However, I unknowing came across a story on PBS Newshour that highlighted an individual with autism. We do know that Autism is prevalent in males, in fact this year 1 in 59 males are on the spectrum. When Newshour was highlighting this individual a toileting issue that not only happened in my childhood, but I did some research and found it, along with other issues to be prevelant in males across the spectrum Included below is the video of that report, if you do wish to watch it.

Anyway, the story, in part, highlights an individual on the spectrum while although verbal, is limited in functionality. His sister, who is slightly older than her is interviewed and is asked what she feels is a challenge as he is aged out of public school. She states her biggest worry is that when he uses a public restroom, specifically a urinal that he lowers his pants to his ankles. She worries if another male would happen to be in the restroom of how this would be perceived. The director of the school he was attending rebuttled in the next clip of that there is and should be more training in this topic.

As it relates to me I at one time in my younger years had phobia of using the restroom, oftentimes having to be escorted by a male when needing the use of one. I garnered the knowledge to use a urinal by myself at a field trip in second grade,  where I pulled my pants to the ground, as I was quickly told by a peer this was not the proper norm when using a urinal. I was mimicked for some years by my peers, and it was even brought up in various banter in Senior High. Nonetheless, I got over it and I know it isnt the proper thing to do. In fact, the same peers that have mimicked me are now friends with me online and I don’t hold that grudge against them not one bit.

I have seen instances of individuals, although less functioning than myself, performing this behavior, This is a proper example of why we need male role models in a positive and ethical nature to guide individuals that are unaware of public practices, such as using a urinal so we do not have any incidents as this family member fears. I personally feel that there is no attraction for skilled and talented persons, let alone those of the male gender to work directly with those on the spectrum. There are some treasured professionals, however they are few and far between and they are needed intensely. Some hinderance is the hiring and training process, although the computer has made this easier to some degree. Nonetheless the sticking point with skill and tenure of individuals is that of compensation and rate of pay. This has to be enhanced in some aspect of there is to be a continuum of services for any given individual, as individuals on the spectrum are honed in their routine and constant need for consistency.

In the same token , there was an instance brought to light in the local media of a local adult training facility where a sexual assault occurred. Here are some combined snippets of that article. It is provided in snippet form as to protect the privacy of the entities involved, although it is public knowledge.

The alleged victim, according to the complaint, lives in a community home, suffers from several disorders, and is non-verbal. The suit stated he could be easily victimized because he considers everyone a friend, and stated he cannot recognize potentially dangerous situations. Attorneys for his parents wrote that the man must have individual supervision at all times.

The suit claimed on that May 7, the man was told to use a restroom by another client who was trying to kiss the man’s cheek while no employee was present.

The two were in the restroom for about 20 minutes, unsupervised, when the alleged victim was sexually assaulted by the other client, the suit claimed. The suit stated that the man screamed, but no

 

A short time later, an employee went into the restroom and brought both of them out, according to the filing.

According to the complaint, the alleged victim appeared shaken.

 

The complaint also alleged that an employee contacted the man’s community home to report that he bit his own finger, causing a self-inflicted injury.

However, when an employee at the man’s community home arrived for the man, the employee observed multiple injuries that could not have been self-inflicted. That employee believed officials were misleading about how the man sustained his injuries, the suit contended.

Employees at the community home also examined the man and photographed his injuries, noting he had lacerations and bruising to his ear, a hand print to his back and bite marks and bruising on his head, legs and chest.

 

The man was transported to the hospital and examined in the emergency department where it was revealed that the man was bleeding from a bite to his genitals, according to the suit. Hospital personnel contacted state police, who are currently investigating the incident.

The complaint states that the day program failed to supervise the man, failed to promptly report and provide care to him and failed to notify the authorities.

While I am going to leave my opinion to the court of legal judgement. I am going to say this, individuals, whether on the spectrum or not have to right to like who or whatever they want, its called equality, and whether or not we want to face it is an ever evident issue no matter whether it is the autism, mental heath, substance use or intellectual disabled community.

What the issue lies in individuals that want any kind of activity, it must be made in terms that the individuals understand that consent must be acquired before pursuing such activity. And while in this specific incident,  there would have been no way to garner consent, nor was this the place for such activity. We must come to reality that individuals with disabilities have thoughts, feeling and views that are not of the traditional mom and pop values as the world did grow up. We must be forerunners in ALL needs of the disabled community as a whole, including individuals on the spectrum.

Likewse ASERT, the commonwealth of Pennsylvania’s leading Autism Gateway has begun a campaign this year entitled Be Safe: Ask, Listen, Respect. This campaign promotes the idea of body autonomy for individuals with disabilities. Many individuals with disabilities require support with intimate areas of their daily life, requiring physical support from family members, caregivers and support staff. An important prevention strategy is teaching individuals that their body is their own, and they have a say in what happens to their bodies. Therefore, ASERT has created a pledge for family members, caregivers, support staff and other professionals to take in order to promote a safe and positive environment for all individuals.  We will shine a light on this in tomorrows post