By Ryan Litchfield, Autism and Disability Self-Advocate
Ryan spent time as an intern at the Center a few years ago and wrote about his experience as person with autism. We welcome him back to share an update with us on the challenges and achievements he has had since graduating from college.
Prior to the age of two, I was considered a healthy baby. I was on pace to meet the appropriate milestones in my life such as learning how to walk and learning how to crawl. My parents taught me many words such as apple, mama, papa, cookie, goo, etc.
Around the age of two, my parents as well as my family members and friends noticed that I was experiencing a lot of hypersensitivity, a lot of tears and crying to be exact. They also noticed I was experiencing temper tantrums, and this was because I was not able to communicate my wants and needs. My parents also noticed a decline in my verbal communication skills, and I eventually became nonverbal, to the extent where I had no communication, no gestures, and even no eye contact. All the words I learned from my parents were a distant memory. My family members and friends, especially my parents, were all concerned for my well-being as they eventually brought me to my doctor, and then eventually to a neurologist at UMass Memorial Medical Center.
At UMass Memorial, around 1996, my family and I met with a neurologist where he did a neurological evaluation on me as well as work with my doctor and family members to analyze and collect data concerning my behaviors and my interactions with people. After gathering all the necessary information, they concluded that I did have autism, but more specifically, pervasive developmental disorder not-otherwise specified (today it would be diagnosed as autism spectrum disorder). A lot of questions were raised regarding my life such as, “Will Ryan ever talk again? Will Ryan ever function on his own? Will Ryan ever be able to live independently? Will he require 24/7 supports? The nature and severity of my autism was considered severe to profound by medical professionals. The neurologist also noted that I was having petit mal seizures (focal seizures) at the time as well.
During my early childhood, I underwent many services and treatments. Applied Behavioral Analysis (ABA) was one of the major treatments. My ABA services usually took place in a home setting for about 20 to 40 hours a week for about 2 years, until around 1998. My ABA program was individualized and structured, and it included the following I needed to learn: eye contact; fine and gross motor skills (key for muscle tone); imitating actions/objects (which was accomplished by reenacting the Mufasa death scene from Disney’s The Lion King); one step directions (i.e. Touch your nose); learning oral and written language in order to promote receptive and expressive language; learning to say yes or no; and matching objects and associating them to verbs in order to understand the relationships behind objects. In addition to ABA, I also underwent early intervention until age 3 where I had speech and occupational therapy. I also attended Sterling Nursery School between the ages of 3 and 6 to receive these continued services. I also would at times receive a secretin shot as gastrointestinal issues (GI) were common and associated with the hypersensitivity I was experiencing in accordance with my autism. Common issues I have experienced in my early childhood years, and years later included trouble making friends; problems with understanding social etiquette or even the hidden curriculum and unwritten rules; thinking literally; nonverbal cues; and transitions. Early childhood was very challenging for me and my family as they experienced stigmas associated with my autism such as, “Your son should be institutionalized”; “He talks weird”; “He has weird thoughts and feelings”; “He doesn’t belong here”; and “He needs to do better personally”. These stigmas were more common in my life during adolescence and young adulthood, especially where I would have people laugh; gossip; and spread rumors about me. Eventually I went into the public-school system, the Wachusett Regional School District, in 2000, after getting the supports and services I needed from Sterling Nursery School.
During my time in elementary and middle school, I had a very difficult time making friends. It was not that I didn’t want to make friends, it was just I did not understand how to appropriately make friends, or, I would feel a lot of discomfort because I was fearful of how they would react when they noticed the symptoms relating to my autism. I continued to struggle with nonverbal cues, and I tended to get quite angry and frustrated when there was not any structure in the classroom. I had a lot of crying and tears during my time in school as well. I was someone that tended to be more independent and alone. Even when I got into middle and high school, I was noticing my vocabulary was extensive and I was sounding more formal than peers my own age. When peers my age would tell jokes, tease, or promote sarcasm, I would usually take things literally. While elementary school was very hard for me, in middle school I noticed improvement as I took part of the band by playing the alto saxophone and by participating on the math team to try to socialize and reach out to peers my own age. Unfortunately, because at times the nature and severity of my autism would worsen, especially towards the end of middle school, this led to very difficult conflicts in middle school, and, even in high school. I experienced challenges in terms of relationships, personal boundaries, and the appropriate use of social media. The transition from middle to high school was very challenging, especially at Wachusett Regional High School, with more students, more expectations, and a rotating schedule. In addition, my grandmother passed away to cancer my first year of high school which made the adjustment to high school even more difficult for me. For a period of time, I was experiencing emotional outbursts, and the school was concerned for my health, safety, and well-being, and they didn’t know if I would last at the high school. However, I did turn things around as I was getting excellent grades in my classes, I was taking honors courses, and, junior year, I started my public speaking engagements, at a local elementary school in my hometown of Rutland with another friend of mine, also with high functioning autism, where students were amazed with our stories. Not only did they ask questions about our personal experiences, but they also asked questions about our hobbies and interests which shows that we are people and not just considered people with disabilities. I was on an Individualized Educational Plan (IEP) throughout my whole public-school career in which I was receiving speech therapy; occupational therapy; social skills therapy; academic accommodations and modifications (i.e. extended time on tests and quizzes); counseling; and academic support. I eventually was accepted to Assumption College once I graduated from Wachusett Regional High School in 2013, and the summer prior to starting college, I got my driver’s license.
Eventually, I went on to Assumption College to pursue a bachelor’s degree in Human Services and Rehabilitation Studies as well as a Certificate in Aging Services, both of which I graduated with in 2017. During my tenure at Assumption College, I continued to do public speaking engagements at local schools in the Wachusett Regional School District about disability awareness and autism advocacy. I have also done disability awareness events at the college at a Light it Up Blue Event for autism as well as talking to students in several human services classes. In addition, at the college, I was a student worker in several offices such as the bookstore; the financial aid office; the continuing education office; and the Worcester Institute for Senior Education (WISE) program. I have taken on several internship opportunities to expand on my network of resources and supports for older adults and people with autism and other disabilities by doing internships at HMEA’s Autism Resource Central, and the Central Massachusetts Agency on Aging.
At one point, I was not sure I was going to graduate from the college on time with my graduating class. In the spring semester of my freshmen year, I had a seizure in my bedroom and I was seen at UMass Memorial where based on my history of seizures, and this seizure, I was diagnosed with epilepsy. I am happy to say I am on anti-seizure medication that has kept my seizures under control for several years now. I had to surrender my driving privileges for six months as well as withdraw from a course at school . I made up that course a couple semesters later by adding a course to a five-course load in which I did succeed. With good seizure control I am fortunate enough to be able to continue to drive.
Another challenge I had was back in June of 2015 where a follow up doctor’s appointment led to a referral to the Endocrinology department at UMass Memorial after finding out my thyroid levels were low. After the endocrinologist did labs to re-check my thyroid levels, and the radioactive iodine uptake and scan came back positive for antibodies, I was diagnosed with an autoimmune condition called Graves’ disease. Graves’ disease is an autoimmune disease which the antibodies attack your thyroid producing too many thyroid hormones which resulted in hyperthyroidism. I was experiencing symptoms such as anxiety, tremors, palpitations, fatigue, moderately enlarged goiter; heat intolerance; increased appetite; increased sweating; radical changes in mood; nervousness; tachycardia; restlessness; and fluctuations in weight (weight loss and weight gain). The endocrinologist put me on an antithyroid medication called Methimazole and a beta blocker called Atenolol to help control the palpitations and tachycardia, and my family and I hoped and prayed I would go into remission.
After graduating from Assumption in 2017 with a Bachelor’s in Human Services and a Certificate in Aging Services, I have taken on job opportunities at both Behavioral Concepts Inc (BCI) as an administrative assistant, but unfortunately, my full-time status there was limited as sadly the Graves’ disease returned after trying the antithyroid medication for two years or so, and the symptoms, especially the hyperthyroidism, returned, and my body was getting ill.
Despite this, I did take on a new job opportunity at Montachusett Home Care Corporation, where I have taken on multiple roles by being both a State Home Care Case Manager Assistant as well as a Clerical Receptionist/Administrative Assistant.
I once again met with the endocrinologist at UMass Memorial in the fall of 2017 where I decided to try Radioactive Iodine Therapy to try to end the Graves’ disease. In the winter of 2018, the Radioactive Iodine Therapy treatment was deemed unsuccessful, and I decided to go forward with the surgical removal of my thyroid which was done at the end of April of this year as the disease was progressively getting worse, and it was something that needed to be treated. Surgery was successful, and now I just take thyroid hormone replacement medication on a daily basis (Levothyroxine) to help manage and treat my hypothyroidism which is a lifelong condition. However, despite all the times of adversity, and all the times of stress and struggles, I have successfully found ways to remain resilient, as well as have the strength and the will power to persevere. I am very proud, because, this year, being 2018, despite my health issues, I feel I have triumphed not only because I was able to do a speaking engagement at another elementary school, and speak to nursing students from the Massachusetts College of Pharmacy of Health and Sciences (MCPHS), but I was also able to have my voice heard at work as they are in the process of promoting autism and disability awareness to both consumers and employees to prevent misunderstandings and misperceptions of these groups of individuals, especially myself.
After writing all this, what can people take away from my story? Be grateful. Life is valuable. We all have stories to share, and issues to deal with, but continue to march forward in life. Also, everyone’s life starts at the very beginning with family. When you have a family that loves and cares for you so much, they will go above and beyond to do everything in their power to fight and advocate for the rights and the well-being of loved ones like my parents did for me which is why I am proud to say I am able to successfully advocate, and, at times, speak up for myself when absolutely necessary.
I will end my story with some final thoughts based on what I shared from my personal experiences, and what I use in my guest speaking engagements and disability awareness campaigns:
1.) Autism is NOT a disease, so even though someone has autism spectrum disorder doesn’t mean that they are going to make you sick (Autism is not a communicable disease).
2.) Individuals on the autism spectrum have trouble with nonverbal communication. If
for any reason you hear or see something that is not appropriate, please be direct with
them. Please! Please! Please!
3.) Individuals on the autism spectrum can be successful with proper support and
treatment (my story is evident of that)! Don’t doubt any of them (that includes me)!
4.) Before you go about judging or criticizing someone negatively, listen to what the
person has to say and try to imagine yourself in that person’s shoes. Individuals on the
autism spectrum can think and perceive the world differently.
5.) Be friendly and understanding (and don’t be hurtful and cruel). Life is already
difficult enough for them period. Form a friendship with them! Sit with them when
they are alone (if they prefer your company)! Help them out when you can!
6.) A person is always a person first; not just a disability.
7.) Be grateful for where you all are in life (this is universal and applies to everyone)!
8.) Promote empowerment; decision making; and independence for people with
9.) Patience and understanding are critical
10.) If you don’t know something about someone’s disability or medical condition;
learn more about it and do some research; or, talk to someone who has more information
(when appropriate). If the person is comfortable disclosing their disability or medical
condition, be an effective listener. The worst thing you can tell a person with a disability
or medical condition is, “I don’t know what…is” or even, “I don’t know how to help
you”. My suggestion would be simply to ask, “How can I help you?” or, “Is there
anything I can do to support you?”
As Temple Grandin said in a quote, “The world needs all different kinds of minds to work together” as the unique talents and strengths of these people, especially with autism, are what unite communities, and, the world. Also, Dr. Stephen Shore once stated, “When you have met one person with autism, you have met one person with autism.”
Thank you all for taking the time to read my story. For some of you, this will be quite an eye opener for those who do not fully know about my life. For others who do know about my life already, well, I plan to continue to march forward and make the best of my life, and to just be the best person that I can be to others. Remember, autism is not just an disability, it is also an ability.