Aspergers101 blogger, Alix Generous, is an amazing young woman who happens to be diagnosed with Asperger’s Syndrome. In June of 2015, Alix was asked to speak at TEDWomen. Below is a recorded copy of Alix discussing “How I Learned to Communicate my Inner Life with Aspergers”. She offers her wit, personal stories, and vision for tools to help more people communicate their big ideas.
Jewelry Designed to Impart how it “Feels” to have Autism
One of the highlights when Sam and I speak at autism conferences is the reaction to a simple painting he had created depicting how it ‘feels’ to have autism. His interpretation offers a great insight and a relate-ability satisfying most neurotypical minds. As a result to the overwhelming positive feedback…we incorporated Sam’s painting into our logo and now have made it into jewelry to wear!
Make no mistake, this is a fundraiser. 100% of all proceeds will directly fuel the cost to provide Aspergers101 as an ongoing free resource and it’s outreach! You can read more about our work at the end of the blog but the focus of this blog is on you and our most uncommon path of raising a child with Autism/Asperger Syndrome.
The Path Less Traveled
The Autism Charm was created out of experience. Both mine and Sam’s journey, though unique to us, is shared by everyone who has a child diagnosed with Autism or Asperger Syndrome. It’s a path less traveled. Early on, a parent finds themselves a bit of an Indiana Jones forging their way through the bramble and uncertainty of EVERYTHING…but you forge on. Years of working together seems each grade advancement was a huge accomphlishment and for a moment, a plateau to rest until onward and upward yet again. You know the path. It was on this isolated journey I met a friend who had, up until that time, also forged it with her son…alone. We formed a most valuable, immediate friendship that felt like an exclusive club! There were others out there and that felt good.
The Parents Bond of Autism
It was from this newly formed friendship that I realized our paths should not be forged alone. If anything, being down the path a bit my family and I then decided to reach out to help others just starting out. Knowledge was power and there is nothing more powerful than a mothers bond of a child with autism…we know each others struggles! Do you find yourself immediately drawn to another parent whose child is on the spectrum? An empathy and fierce loyalty is instant! To remind me of this bond and that I am not alone as I feel, my friend gave me a bracelet that I’ve worn out! It has a symbol of autism that though only she and I wore, that was a daily reminder that I can get through this….there are others!
The Autism Charm Design
So now we, Aspergers101, have taken the logo Samuel designed and made it into a charm bracelet or necklace! We hope you wear it with pride and know that you are never alone in your struggles. Of course, it is through my families faith in God that offers us peace but good to be reminded that others tread the brambled path of Autism. I’ll repost Sam’s description of his design:
In everyday life, there are thousands of things happening. Some of these are big deals while some are little deals. Many people on the spectrum have a difficult time trying to differentiate “big deals” and “little deals.”; in other words, what TO make a big deal out of and what NOT TO. This whole “choosing your battles” is something that I still have a hard time comprehending.
A few months ago, I was in my third period chemistry class. My teacher was handing back a quiz that the whole class previously took. When I got my quiz back, I saw that I was marked off three points. I was confused because I checked my work multiple times and still got the same answer. Then, when my teacher recited all of the answers out loud, I proved my suspicions. I saw that my answers were correct but points were still deducted from them. Later that class period I went up to my teacher and respectfully asked him why I got points marked off. He looked at my answers and said, “Because they are wrong!”. I wrote down these three answers: “49.00, 52.00, 53.00.” He said that the correct answers were “49, 52, and 53.” I did not understand why he was marking me down points since my answers and his answers were equal. Before I go any further, the numbers were numbers of atoms, and atoms cannot be divided according to Dalton’s Atomic Theory. He told me that because I added the decimal and two zeros, I indirectly inferred that atoms could technically be divided. I was extremely upset but didn’t show it. I sat back down at my desk.
The next day, I had a meeting with my school case manager. I told her about what happened. With math and science being her strong suit, she understood my teacher’s decision. However, she also completely understood mine as well. I was so upset that I wanted to submit a district grade dispute! I would have usually gone through the department chair, but since my teacher is the department chair, that was not an option! I was so ready to file that paperwork and get my three points back! But then my case manager asked me “Is this a big deal or a little deal?”. After talking for a while, we decided that this was a little deal because it was only worth three points and, even if I got them back, I would still have to be in class for many months to come with a teacher that would dislike me because of the dispute.
These types of situations have come up in my life ever since I was a toddler and my parents and special education team have helped me come up with some things to do in order to determine if a scenario is a big deal or little deal, along with how to act on it.
I created an infographic that you may be able to use in order to demonstrate what problems are big and which problems are little. Check it out below!
On a more personal level, I force myself to reflect. This is usually hard for me to do since all I want to do is act immediately, but fortunately, I (through mistakes of acting too quickly) have learned how to stop myself. I ask myself if this particular problem is a big problem worth getting worked up over, or if it’s a smaller deal that I should just let pass over. I sometimes even get advice from my parents or special education team if my emotions are running too high at the moment and I am not able to think clearly and reflect. If I am really angry about something that I know is a smaller problem, I sometimes think about bigger problems that my peers are facing and realize how lucky I am to only be having this little problem.
If you are on the Autism spectrum: reflect, reflect, reflect! It really does pay off to slow down and calm down! I rarely make good decisions when my emotions are too high. I am learning to take the time to calm down and think things through before I decide how I should act.
If you are a parent: help your child come up with his/her own chart to help decide if something is a big or little deal.
If you are an educator: take the time to talk with your student if you notice that he or she is about to turn something little into something big when it doesn’t have to be. Help him/her to calm down and then talk through the issue. Don’t blow them off because you don’t see it as a big deal. Your student hasn’t come to that same conclusion yet!
“It seems that for success in science or art, a dash of autism is essential”
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!
Challenges to Spectrum Success
- A child is born into the world
- Parents don’t expect what challenges a child could bring
- Your child doesn’t make eye contact
- Your child does not respond to their name
- Your child does point or acknowledge you
- Your child does not understand social or gestures to communicate
- Your child does not make noise
- Your child does not respond to being picked up or cuddled
- Your child does not use facial expressions
- Your child does not play with others
- Your child does not share interest or enjoyment with others
- Your child does not respond to or understand your emotions
Aspergers101 is dedicated to you. I created this resource through a reflection of my own need to gain daily information on raising my son diagnosed with Asperger Syndrome. After yearning to know why our son Sam divided so quickly from his kindergarten, 1st, 2nd and then 3rd grade classmates, we learned of a form of Autism called Asperger Syndrome. Once diagnosed, I quickly immersed myself in learning all I could about how my son functioned. What set him off, why the distance and most importantly, how we as a family could help Sam survive without us as we age.
Aspergers101 saved us really. In providing you with the daily information I craved so many years ago, it’s work kept the attention on you, your need all while working on Sam’s success. He became a strong advocate out of his own desire to shine light on a path less traveled. Sam has now taken the lead in workshops, conferences
and training to describe what it ‘feels’ like to have Autism. He is honest about the challenges but positive about the attributes. He has grown into a young man!
I’ve always said, don’t think of Autism as a weight, but a pair of wings in which to soar! – Sam Allen
It’s a success story yet you know as we fight for our children diagnosed with autism and ascend that steep hill at an exhausting pace, there comes a time, a moment, that we should pause our climb to look how far our child has come! This is one of those times.
Our younger son Charlie and I attended the Corporate Philanthropy & Non Profit Awards luncheon from the San Antonio Business Journal recently to support Sam as he was a finalist in the category of Volunteer of the Year for a Non-Profit. After the finalists were acknowledged and the winner, from a nearby table, was announced we relaxed and enjoyed the dessert before us. It was a total shock when, at the end of the luncheon, the “Spirit of Giving” Award was presented. As they began to describe the person of honor…it became apparent it was Sam! As he made his way to the stage a rousing standing ovation took place for a young man who was once told “you can’t….” by a doctor oh so long ago. They say it takes a village to raise a child with Autism…our village consists of God, a dedicated & selfless father like Herb, a supportive and protective brother with the heaping heart and soul that is Charlie, some very special educators and and handful of family and friends who are not afraid to embrace ‘different’ for all it’s glorious beauty.
Last question (to Sam) in the article: What advice do you have for someone who would like to get involved in a nonprofit?
Just remember you are doing this for the good of the people. Seeing the smiles on their faces will pay off more than the money ever will. Be prepared to be a better person.” – Sam
There is such an instant bond with any family raising a child with special needs. A look of “I get it, the challenges, loss and the euphoric highs at achievements deemed ordinary by neurotypicals”. In an instant this bond is acknowledged and suddenly you don’t feel so isolated. I want to reach out across the internet divide to thank you for allowing me to connect with you. You have been a huge part of my family’s journey and Sam’s moment of success!
by: Jennifer Allen
The article was published on November 16th 2017 and written by Tricia Schwennesen, the Associate Editor of the San Antonio Business Journal. Here is a link to the full story: https://www.bizjournals.com/sanantonio/news/2017/11/16/spirit-of-giving-samuel-allen.html
Join Aspergers101 as we skate for Autism/Asperger Awareness! Let’s all go to a true San Antonio’s landmark…The Rollercade for one more roll around the rink before school sets in. The nostalgic wooden rink will take you back to a day long gone and owner and USA Sports Roller Hall of Famer, Verna Quaranto will keep it a sensory-friendly skate for our 2-hour designated celebration! 100% of entry fee(s) will be donated to the outreach programs offered through Aspergers101…come see us!
|Date:||August 17, 2017|
|Event:||Skate for Autism/Asperger Awareness!|
|Venue:|| The Rollercade |
|Location:||223 Recoleta Rd, San Antonio, TX |
San Antonio, Texas 78216
Aspergers101’s Samuel Allen receives the TCASE (Texas Council of Administrators of Special Education) 2017 Student Success Story of the Year Award! This annual award precedes the keynote speaker at the largest TCASE Conference in America. It is awarded to a student who has succeeded after graduating High School with the assistance of Special Education.
Sam attended NEISD in San Antonio Texas and graduated Ronald Reagan High School in 2013. In spite of an Autism diagnosis, he is driving, working, and currently attending college toward a degree in Business Administration and Computer Information Systems. Sam says “having Autism/Asperger Syndrome is not a weight…but offers a pair of wings in which to soar.”
Esped.com sponsored the presentation with an award toward his education. It is the contents of his speech that merits posting. Within the allotted 15 minute period, Samuel takes the massive audience (over 1,000 educators/administrators in attendance) through his elementary, middle school, and high school years as a student with special needs. There was not a dry eye in the room when Sam recalled how one teacher’s note made the difference from feeling ‘disabled’ to knowing Autism was a powerful gift.
(Note: This video includes the introductions, Sam’s speech begins at the 4:11 mark)
We congratulate Sam and all students enrolled in Special Education, their parents, and most certainly the educators who all work together toward a student’s graduation. The road is often rocky met with trials of testing programs that remove the obstacles often found with a special needs child. However, if all factions are working together, Sam is proof that special needs can mean success, and sometimes that success is found in graduation.
By Jennifer Allen
— NEISD Special Ed (@NEISDspecialed) January 18, 2017