My name is Katherine and I am 37 years old. I have been receiving Social Security Disability and Medicare for the past ten years. I have a learning disorder, autism, mental health issues, and a host of physical conditions making it impossible to work outside the home.
It was not an easy process. If my mother hadn’t been a trained paralegal who did all the initial paperwork, and if I hadn’t later been represented by an attorney, I don’t know that I would have prevailed. It was a long and frustrating process, designed to make you give up out of frustration. I didn’t give up. I am told the process is now easier, and I hope that it is.
I have been asked for any tips that could be helpful in filing for disability if you are on the autism spectrum.
- Reach Out – The most important thing is not to be isolated and alone because the process can feel overwhelming. My mother completed my first application. It was denied so we went to a law firm that represented people applying for SSI and SSDI. No fees, besides reimbursement for copies, filing fees and postage, will be charged until your case is decided.
- Apply for Everything – I qualified for SSI as well as disability, I would not have received it if the SSI box had not been checked off as well as the SSDI box. Make sure your application reflects everything you believe you are entitled to.
- Be Prepared – Get your records in advance. Lucky for me, my mom saved all my education and medical records relative to my disability since I was a toddler with low muscle tone. Report cards, occupational, physical and speech therapy records from my school years as well as testing results and medical records were in several boxes in her guest room. Some of them were from before medical records were computerized.
- Call Your School – In my state, the school district holds all your records until your 26th birthday. I was able to get mine before they were destroyed. This helped a great deal because not only were all the testing results in the files, so were all the notes related to that testing. So were IEP meeting minutes, report cards and anything else the school keeps in your file relative to your education.
- Medical and Other Records – Some of my disabilities were with me since childhood. Social Security will request all records related to your disabilities, and you will have to request them from all providers you have had, including medical, psychiatric, counseling, and other therapists. Any MRIs or other types of medical testing will be part of this. Your attorney can assist you with this.
- Be Good to Yourself – This is the most important thing, as the process can be stressful. Reach out to friends and family and make sure that if you’re feeling stressed, you’re not alone. Remember, this is just information; you are not your disability.
- Trust the Process – I received my first Social Security payment approximately 2 years after first filing. After the initial denial, I got an attorney and won on appeal. I received a back payment which went to the date I first applied, and my attorney received a percentage of the amount I was awarded.
Looking back, I realize there was nothing I could have done differently to change the process. Sometimes I was scared; other times I was frustrated. Today, ten years on, I am just grateful I was able to receive SSI, SSDI, and Medicare. Good luck and don’t give up.
Katherine Nestor is an Autistic Adult Self-Advocate.
