Ethan Hirschberg is a teenager with High Functioning Autism. In March 2017, he started a blog called The Journey Through Autism, where he shares his personal experiences, insights, and advice to individuals on the spectrum, parents, caregivers, educators, and providers. Ethan's goal is to educate, advocate, and inspire. Please check out his blog as well as his Facebook, Twitter, Instagram, and LinkedIn!
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.
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!
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!
Please help us welcome Ethan Hirschberg to the Aspergers101 family of bloggers! Ethan will offer his insights to living on the autism spectrum first-hand and we think you will be inspired, informed and delighted as much as we are! In his first blog with us, his Mom answers questions basic to families facing the diagnosis of autism.
My parents have been my rock throughout my journey with Autism. Both of them have helped me so much and I can never thank them enough. All I can do is love them! My mom and dad are the best parents that I could’ve ever had. They love, support, advocate, and care for me and my brother. If I can be half of a person that they are, I’ll be just fine! Before I publish my next blog post about some of my challenges during the winter holidays, I interviewed my mom and asked her a few questions about her personal experiences with caring for me (a teen on the spectrum).
Question: When did you find out that Ethan was diagnosed with Autism and how did you feel?
“I found out when Ethan was two and a half. Ethan had started seeing a speech therapist when he turned two because his speech was very slow to develop and no one besides his very close family who saw him frequently could understand him. During one of his speech sessions, the therapist recommended that he get evaluated to determine if there was a ‘more global explanation’ for his difficulties. A full developmental evaluation was performed and during that appointment, we were told about his diagnosis. I was shocked and yet at the same time knew that this explained the other difficulties that he was having. I immediately went into treatment mode to get him started with all of the therapies that he needed. It wasn’t until six months later when I was able to stop working and focus solely on Ethan that I began to deal with my feelings regarding the diagnosis. I cried, worried, and grieved a lot and spent many very late nights on the computer doing research. I was heartbroken because I wasn’t sure what his future and quality of life would be like. I was very lucky to have lots of close family and friends to help me get through this very difficult time.”
Question: What made you suspect that he could be on the spectrum?
“I noticed lots of little things while Ethan was an infant but didn’t put everything together until Ethan’s speech therapist nudged me into it. When Ethan was three months old, his pediatrician had to be changed because the doctor talked loudly and Ethan would just scream whenever Ethan was in his presence. My mom and I also attempted on several occasions to get handprints and footprints of him in those little clay keepsake kits, but Ethan would always clench up his hands and feet and we could never get good imprints. There were many other instances throughout his first two years which made me realize that he was a very sensitive child, like not liking certain foods, not liking to walk on grass or sand, etc. Between the age of one and two he started walking on tiptoes, was more rigid, would withdraw when new people would approach him, and began to have a lot of extreme tantrums, much more than a typical toddler. While Ethan was delayed in a lot of areas, he also had many skills so I didn’t quite put everything together until an outside source urged me to take a closer look.”
Question: What has been the worst part during Ethan’s life?
“There were two worst parts that I recall most. Between the ages of three and five, it seemed as if every single day was full of many tantrums and meltdowns, a lot of stimming, a lot of frustration and anxiety on Ethan’s part, and constant struggles over much of the day. The other extremely difficult time was when