This year, I’m planning to feature an amazing individual, Adria Nassim over a few blog posts as a voice of adult autism. Adria is quick to say that she does not speak for all of autism, and she is only one person who has autism, but I think it is incredibly important to hear from those who live with autism. If ultimately, the goal of diagnoses and treatment is to improve the quality of life, it makes sense to both look at research to find out what is effective, and also learn from those with direct experience.

I met Adria about 13 years ago in Bloomington, Indiana through the College Internship Program. Adria was a college student getting support services through the College Internship Program, and I was a graduate student doing some practicum hours with the center, which gave me some amazing opportunities to work under the supervision of the late Dr. Don Weller and learn more about the strengths and needs of young adults with Autism and nonverbal learning disorders.

Since then, Adria has taken a position as a bi-weekly columnist with the Bloomington Herald-Times, and she works as a research assistant at the Indiana Institute on Disability and Community at Indiana University. She writes a monthly blog, Adria’s Notebook, about her personal experiences with multiple disabilities as a young adult and talks about independent living and community involvement in teens and young adults with disabilities. She also gives guest lectures on autism and learning disabilities in children, teens, and young adults for the university and other academic institutions serves on the board of directors for the Monroe County Autism Foundation, and is currently serving as a Volunteer Advocacy Ambassador with Autism Speaks to help advocate for autism-related policy and law on the federal level. If you are around Bloomington, you may see Adria around town with her service dog, Lucy.

In this post, I wanted Adria to share a little about her background, including the types of supports and services that she has found to be beneficial. Below are some of the questions I asked her and her responses. I think you will find this fascinating and inspiring!

Growing up, how did you learn that you had autism? 

In childhood, I was actually not diagnosed as having an autism spectrum disorder. I was diagnosed at birth with cerebral palsy and born 3 months premature. Later, at age five, I was diagnosed with a significant nonverbal learning disability. Though I had social and emotional delays, these were less apparent, and the complexity of the ASD did not really begin to show until approximately my mid-teens, once the social world became more complex. I received both regular and special education services K-12 for cerebral palsy and a significant learning disability, but never for autism until college. I was clinically assessed and determined to fit the criteria for autism spectrum disorder the summer after finishing my freshman year of college at age 20. 

What types of therapies and supports were helpful for you during childhood and adolescence? What did your parents do well to help you? 

I did not receive any sort of professional therapy related to autism during my childhood years. I received weekly physical and occupational therapy, both privately and through the school system due to cerebral palsy, but nothing related to autism; however, my parents were very good at developing and enforcing consistent expectations and consequences and both tried as hard as they could to “be on the same page” with these expectations. They also expected me to contribute to the running of the household from the time I was very young and were very good with modeling and working on appropriate social behaviors and goals both at home and in the community from the beginning. They accepted early on that I would have challenges, but did not do everything for me. They expected me to try things on my own first before they would help. I also became used to being left in the care of trusted individuals other than my parents or family members from a very young age. This really helped me become comfortable with leaning on others other than my immediate family for assistance or social relationships

Autism Related Supports in Adolescence:
Tutoring
Smaller Study Hall in School
Direct 1:1 Care After School and Summer 1:1 Care, Until Leaving for College (2006)
Child and Adolescent Mental Health Services
Year-Round Swim Team age 10 until graduating high school 

Young Adulthood: (Today) 
Applied Behavioral Therapy (Work on Executive Functioning Skills Such as Organization, Time Management, Prioritization, etc. (Meets Once a Week, Paid for by Medicaid Waiver) 
Clinical Therapy and Psychiatry (Paid by Medicaid Waiver)
Swim at YMCA 3X per week 
Service Dog, Lucy trained for autism spectrum disorder and cerebral palsy
Direct 1:1 care 2 days per week, assistance with independent living skills (Paid by Medicaid Waiver)
Social Mentoring (1:1 Indiana University Bloomington student beginning in January 2021) Paid by Nassim Family 2X per week 

What challenges did you experience when you left home for college, and what supports did you find helpful? 

I was one who couldn’t wait to go to college. I have always been someone who couldn‘t wait to see the world and experience what was out there. Learning to fit in socially was sometimes hard, but I found people who liked me for me and were really understanding. As far as supports, I lived on campus with an RA in my apartment who knew I had multiple diagnoses. I had 2 student assistants per semester, paid by Vocational Rehabilitation who would make sure I was up for class, had eaten breakfast, found my way to class for at least the first 6 weeks of school until I knew my way, that I had clean laundry, my backpack was packed, etc. 

You have shared some of your journey with self-acceptance. How has this been an important part of your growth and maturity?  

During my teen years, the social gap between my life and the lives of my friends slowly began to widen. I couldn’t understand why if I was keeping up with them academically, I couldn’t keep up socially. I experienced a lot of depression and self-loathing for a while. After several years of support from child and adolescent mental health services, I began to accept that my life may be different, but that didn’t mean I had failed. Today, I am much happier. I will say, one of the best things to happen to me to help facilitate this switch in thought process was actually getting a clinical diagnosis of autism. Knowing that these attributes are not related to deficits of work ethic or character, but rather something medical, has made all the difference. 

You have become an advocate and a voice in the community representing individuals with ASD.  How have you been able to find your social niche? 

I wouldn’t say that I represent people with ASD, because the spectrum is so broad, and I’m only one person on it in this entire country. I will say, I did receive 3.5 years of social skills therapy both individually and in groups at a private, independent living skills program for young adults with college capable autism and learning disabilities. Along with learning skills like how to feign eye contact, how to hold a reciprocal conversation, and how to read gestures and body language, I spent a lot of time practicing skills out in the community, and not just with students in the program. I learned to also pay attention to things like personality, language, social conduct, and behavior to really get a sense of a person. Before I ask someone to come hang out, I will usually spend a good amount of time observing all of these things (several weeks and if possible, in a number of situations.) Prior knowledge or experience with disability is always good, but more important to me is a strong sense of compassion, sensitivity, high drive, good morals, sense of humor, being physically active, and being the kind of person who likes to go out and have fun. 

What sources of support are currently helpful for you? Do you have any advice for young adults who need help but don’t know how to go about getting it?  

ABA
Clinical Therapy, Psychiatry
Direct Support 1:1 Care
Social Mentoring (Beginning January 2021) 
I would hesitate to offer advice simply because it depends on what areas they are looking for help in. 

Why do you think there are so few supports and resources for individuals with autism after childhood? 

I still think autism is primarily seen as a diagnosis affecting children. It does certainly affect children. The CDC currently estimates that as many as 1 in 54 kids in America are now diagnosed with autism. However, the CDC also estimates that as many as 1 in 45 adults are on the spectrum. I think much more attention is paid to any sort of abnormal development during the childhood years as opposed to the adolescent and adult years due to campaigns for early identification and intervention and access to services early on.

As the young person ages, the cost of his or her care will become more expensive, particularly when you factor in elements such as housing, employment supports, 1:1 direct care, transportation, and behavioral and psychiatric supports which may or may not apply at the pediatric level. I think our country needs to pour more resources and funding into serving those with autism and their families AFTER age 12. Autism is not just a condition of childhood. The individual’s needs will change and may even grow as they get older. In many cases, you may be working through what you faced in childhood in addition to new challenges. Autism is a very complex journey regardless of where the individual falls on the spectrum. These individuals and their families should be supported with adequate funding so that they can continue to live productive lives not just as children, but also as adults. 

Adria lives in Bloomington, Indiana. If you are interested in reaching out to her, you can check out her column (you must have a subscription to the Herald-Times), her blog, or send her an email at: anassim@indiana.eduTo subscribe to her blog, visit: blogs.iu.edu/adriasnotebook and fill out the simple subscription form.