Why It's Hard to Get Off Government Assistance as Someone With Autism

I was first diagnosed with autism at 2-and-a-half years old. I had a mother who immediately knew what I was going to need to develop as much as possible. I’m grateful for that and always will be. My mom helped me get PA medical assistance to help pay for my medicine. That also helped pay for all my services through the counseling center, from childhood to being an adult on the autism spectrum today.

I came from a middle-class family who had private insurance, but mental health services can be pricey. Psychiatric medicine isn’t cheap, and I had to take it since I was a baby. I also took a medicine that cost almost $1000 for a 30-tablet bottle. At the time I didn’t understand why it was so important to have health insurance even if it was through the government, until my mom told me that $1000 would have come out of my pocket if I didn’t.

When I turned 20 years old, my mother told me I had to apply for Social Security Disability benefits in order to keep my PA medical assistance. I needed to keep my PA medical assistance to continue to get my medicine and receive proper treatment for my autism. I was denied Social Security Disability like most Americans are when they first apply for it.

You always have a right to appeal your decision. I remember when I went for my hearing and testified in front of a judge. I had to take a day off to go to my hearing as I was in college at the time. I remember the judge asking me “Do you have a representative appearing with you today?” I didn’t understand what the judge meant at the time, and asked him to explain the question. The judge did and we went on with the hearing after I properly answered the question.

My parents praised me after the hearing was over. When the letter came with the decision, I was granted Social Security Disability benefits and have been on them since 2011, except for 5 months from August 2013 to January 2014 when I briefly went back to work full-time.

Today, it’s not my favorite thing having government assistance after improving year after year. I want to go back to work full time one day, and have side jobs for extra income so I can travel. But when on government assistance, you can only make so much money and that frustrates me, especially with how much I’m capable of doing. My Social Security disability helps me pay for my rent and car, along with my part-time work. I make enough to at least manage my bills and have some extra spending money, but not as much as when I lived at home.

Rent is high, and a full-time job making at least over $25,000 a year would have to happen if I wanted to go off government assistance. The job market can be tough too. People with autism may have trouble getting full-time work, depending on education and skills. It may also affect their mental health negatively, and some people are concerned about that with me. I sometimes feel like I can’t win. Not everyone with autism will be in this position, but if you are, you won’t be alone. I’m having a difficult time overcoming this, but I will and I believe you will too. But stay as patient as you can and let things happen naturally, just like everything else in life.