(The following article by Staff Writer, Rene A. Guzman, originally ran in the San Antonio Express-News on November 19th 2018)
It’s been more than a dozen years since Jennifer Allen first learned that her oldest son, Sam, had Asperger Syndrome, now diagnosed as high-functioning autism. And still she remembers how fast her sadness turned to relief.
At last she knew why Sam, who was 10 at the time, always isolated himself from the other kids in class. Why he could never finish a sentence without losing his train of thought. Why despite being bright his grades suffered.
“I knew that I’d be able to understand my son a lot better,” Allen said. “It was a breakthrough.”
SA Gives story on Aspergers101, a San Antonio-based website resource for people with high-functioning austism and asperger syndrome. Jennifer Allen (left) founded the site, inspired by her son Samuel (right), who has been diagnosed with high-functioning autism. (Kin Man Hui/San Antonio Express-News)
It was also the beginning of a mission to help other families identify and understand Asperger’s, with Sam as both guide and inspiration for how to succeed with such a complex and often bewildering neurological condition.
“Eventually we got the hang of how to deal with my autism,” said Sam Allen, now 23 and about to graduate from college with a degree in engineering. “But we decided we wanted to give these other parents the opportunity to get the information that they need in order for their child to cope with their autism. We didn’t want them to be in the same position we were, when we were in the complete dark about autism.”
That’s why mother and son founded Aspergers101, a San Antonio nonprofit dedicated to educating and empowering all lives touched by Asperger’s and high-functioning autism.
A few weeks ago, someone who had just learned about my blog through my temple came up to start a conversation with me. She wanted to learn more about me and my advocacy work. After talking for a few minutes, she commented that “I have it easy.” I was confused and asked for clarification, in which the response was “you know…glamorous Autism.” I was taken aback. Multiple emotions rushed through my head: anger, confusion, but also determination. I felt angry because this person has no idea what I go through on a daily basis and still had the guts to tell me that I had it “easy.” I was confused because I could not understand how someone could say something like this to me. Finally, I felt determined to keep writing and advocating because although there is an increase in understanding in this world, there is still so much more work to be done. I researched this idea of “glamorous Autism” and, to my surprise, multiple articles came up. This newer myth that I am now aware of needs to be squashed!
The Autism spectrum is diverse. Some individuals with Autism are nonverbal while some are high functioning savants. Each level of functioning within the Autism spectrum has its own set of unique difficulties. The difference between low functioning and high functioning is enormous and I realize that others have it much harder than I do. However, this does not mean that High Functioning Autism is “easy” or “glamorous”. High Functioning Autism has its own challenges that affect me on a daily basis.
As a teenager with High Functioning Autism, I have been trying to find a book written by a professional in the field that not only is interesting, but factual. When I say factual, I am talking about information that truly represents the mind of someone on the spectrum. No stereotypes, no misrepresentation, just pure knowledge. This past November, I found that book… Uniquely Human: A Different Way Of Seeing Autism by Dr. Barry M. Prizant, Ph.D., CCC-SLP with Thomas Fields-Meyer.
Let me start out by saying that this is the best book that I have ever read in my whole entire life (and I really mean it). Every single moment I was reading this book I couldn’t believe what I was reading. With decades of experience, Dr. Prizant really knows what he’s talking about. Dr. Prizant mentioned qualities of professionals who “get it.” He really “gets it.”
Uniquely Human: A Different Way Of Seeing Autism starts out by stating that the treatment of Autism is a largely unregulated enterprise. I completely agree. There are certain licensing requirements for licensed psychologists (Ph.D./PsyD) and board-certified behavior analysts (BCBA). But, there is no other agency checking up on providers making sure that they are doing the right things for the right reasons. Because of this, there are some professionals who unknowingly worsen the situation that they’re trying to help.
Dr. Prizant also states something that foreshadows the rest of the book. He says, “Autism isn’t an illness, it’s a different way of being human.” When I think of this, I think of a famous quote by Stuart Duncan, “Autism isn’t a disability, it’s a different ability.” Everyone is different in their own way.
Another thing that is mentioned in Uniquely Human: A Different Way Of Seeing Autism is the all too known but not used enough question… why? Dr. Prizant mentions that professionals who are working with children on the Autism spectrum need to ask themselves this. He states that many providers see what a behavior is and then try to eliminate it. What they should really be doing is being a detective and finding the truth about why someone is doing something. Once you determine this, proceeding with the right treatment is much easier to do. I personally have seen an aide to a special needs child repeatedly tell the child to stop humming, when in reality, this was a much needed and extremely important stim. He says that professionals who ask why are professionals who “get it.” People who “get it” must have empathy, the human factor, sensitivity, shared control, humor, trust, and flexibility. From what I have seen with Dr. Prizant’s writing, he truly “gets it.”
The last thing that really stood out for me when reading this book was the author’s take on social language. Dr. Prizant said that people with Autism have a hard time learning a social language. He then gives a genius analogy: learning a social language is like learning a second, foreign language to someone on the spectrum. It’s harder to achieve the same fluency level as native speakers. These native speakers are “typical” people while the foreign language applies to people with Autism. This gives me a whole new perspective on my troubles with social skills knowing that in a way, it’s a foreign language to me. Dr. Prizant said that in the real world, people with Autism are left to fend for themselves; navigating a reality that makes sense to everyone else but them. For individuals with Autism, comprehending the social world can mean living in a state of confusion. This is so true for me! There isn’t a day that goes by where I don’t get confused, stressed, and frustrated over my social skills. I have trouble seeing and understanding social cues, hints, sarcasm, facial expressions, etc, which makes it so difficult to understand what everyone else knows.
I recommend Uniquely Human: A Different Way Of Seeing Autism to anyone who is affected by Autism. I have not only gained insightful knowledge from reading this book but have been reminded that I’m not the only one. I especially encourage all educators and providers to read this one-of-a-kind book (it really helps). Thank you, Dr. Prizant, for not only providing me with the best book that I have ever read but for giving me more inspiration to better discover myself!
If you haven’t seen it, here is “Asperger’s High”, a mock drama situated around a fictitious sitcom as seen on youtube.
Sam and Jennifer interview its very talented co-writer and actress, Leslie Tsina, below. Tsina talks about the making of the mock drama “Aspergers High” with some behind-the-scene tidbits, reactions from the autism community and her future projects.
It is with great enthusiasm that we will welcome Dr. Temple Grandin to San Antonio and South Texas during Autism Awareness Month, April 19th, for an insightful and encouraging evening titled: Unlocking the Potential. We can hardly wait!
Dr. Grandin will share her personal story and insights on how to prepare for a productive life of independence living with Autism. Attendees will also hear from Chief People Officer Tina James to learn how local industry giant HEB is launching an innovative program that utilizes the talents of those on the spectrum. Mr. Ron Lucey, the Executive Director of the Texas Governor’s Committee on People with Disabilities will open the evening with a message from our state’s capitol. Asperger101’s Unlocking the Potential will be an evening well spent for those seeking encouragement and concrete guidance for living to the highest potential with Autism and Asperger Syndrome.
We hope you enjoy! -Aspergers101
5:30p – 6:30p
VIP Meet and Greet with Temple Grandin, Tina James, and Ron Lucey
Hors d’oeuvres in the mezzanine catered by Page Barteau
(VIP Tickets Only)
Three cheese stuffed mushrooms topped with panko breadcrumbs
Fresh tomato, house pulled mozzarella and basil skewers drizzled with a balsamic reduction
Chicken wrapped in bacon and stuffed with jalapeños
Beef tenderloin sliders served on a yeast roll with raspberry chipotle
Book signing beginning at 6p
Doors open for general admission & continued book signing
7:00p – 8:45p
Jennifer and Samuel Allen
Co-Founders of Aspergers101 and Driving with Autism
Executive Director of the Governor’s Committee on People with Disabilities
Equal Access to Independence (How Texas is leading the nation in supporting citizens who have diagnoses that could cause communication impediments with a peace officer on the road)
Gail Saltz, MD (special pre-recorded video)
Clinical Associate Professor of Psychiatry at the New York Presbyterian Hospital Weill-Cornell School of Medicine and a psychoanalyst with the New York Psychoanalytic Institute
Pre-recorded video: The Power of Different (Dr. Saltz will not be present but has recorded a special video for the event referring to her latest book, an illuminating and uplifting examination of the link between brain differences and aptitude)
Chief People Officer at HEB
Bridges: Connecting Extraordinary People to Career Opportunities (Announcing a new program placing college graduates with High-Functioning Autism or Asperger’s in the IS department at HEB)
Temple Grandin, Ph.D.
Inventor and Professor of Animal Science at Colorado State University
Diagnosis to Adulthood: Preparing for a Life of Independence (Dr. Grandin’s personal story and guidance in building a life of independence for those with Asperger’s)
Are you ready for a treat? How about Eustcia Cutler (The amazing mother of Dr. Temple Grandin) interviewing Dr. Tony Attwood (premiere Psychologist specializing in Asperger Syndrome) discussing all things High-Functioning Autism and Aspergers! Though you will have just a couple of short steps to access the free interview…it’s well worth it as you receive over 2 hours of knowledge back and forth from these two experienced leaders in the field of Autism today.
Overview: Eustacia Cutler offers a series of webinars free to anyone wanting to gain knowledge on raising a child on the Autism Spectrum. She titles her interviews…Conversations with Eustacia Cutler and believe me, if there is anyone who know about successfully raising a child against all odds….it is Ms. Cutler. We share a link to the interview below as well as to her website here: Temple Grandin Eustacia Cutler Autism Fund.
Eustacia’s Guest: Tony Attwood is well known for sharing his knowledge of Aspergers Syndrome. He has an Honors degree in Psychology from the University of Hull, Masters degree in Clinical Psychology from the University of Surrey and a PhD from the University of London. He is currently adjunct Associate Professor at Griffith University in Queensland.
Our son Sam is now 22 years old. Together we have discovered Autism first from a stage of confusion, then diagnosis and ultimately the journey toward understanding and adjustment. This journey hasn’t been taken by just Sam or me. The education and life-changing decisions included our family of four and those whose chose to remain linked to us either by love or simple curiosity. Autism became us. As we learned to navigate the education system, employment and higher education, we’ve taken you along.
Through our website Aspergers101, together we have reached for stories of enlightenment and searched to navigate our next stage in life. Now at age 22, driving and nearing college graduation, Sam has reached a personal plateau that bares sharing. With an absolute delivery he declared, “Autism does not define me”. He further went on to explain that up til now, he would introduce himself to educators, peers or the seldom few who initiate conversation as “Hi I am Sam…and I have autism.” He felt he owed them an ‘explanation’ for his social awkwardness, his lack of eye contact or his seemingly bland behavior.
The statement below is from someone I admire and have had the privilege to meet and interview for Aspergers101. Jennifer McIlwee Myers, Aspie at Large, is a writer and a speaker in the Autism world. Her insight into the world of Autism not only entertains but offers enlightenment (especially for us neuro-typicals) so when she posted her thoughts in reference to the news of the recent horrific college shootings by someone diagnosed with Aspergers, we asked her permission to re-post for our readers.
“The only way I know to cope is to be human together.” -Jennifer McIlwee Myers
There are many discussions online about the person who shot and killed 9 people at Umpqua Community College in Oregon. The one I want to address is the shooter’s Asperger’s diagnosis. Unfortunately, having Asperger’s (or autism) doesn’t protect you from mental illness, and it doesn’t make you an angel.
Aspies and auties can have the same kinds of mental problems as other folks. Frankly, I worry that people on the spectrum are less likely to get appropriate mental and medical help because any problems or “weird” behaviors we have are blamed on autism.
But don’t let anybody tell you we are in any way more dangerous than humans in general. The only people we are more likely to hurt are our own individual selves, and then only for the reasons that humans in general do. Like everyone else, those of us who experience little acceptance and lots of bullying may self harm or use alcohol and other drugs when the coping methods we have just aren’t enough. We can be troubled, because we are human.
And yes, if you have someone living in your house with recurrent severe depression, it is better not to have easily accessible, already loaded firearms around. That’s because when people who decide to commit suicide are delayed from doing so, they usually wind up staying alive.
I can understand anger. I can understand rage. I can even understand really feeling like you want to hurt someone. I don’t understand actually doing so. I don’t understand why people actually commit mass murder. I don’t understand killing sprees.
Those of us on the spectrum are just as saddened and bewildered by this as the people who aren’t. The only way I know to cope is to be human together.