Oftentimes parents who suspect their child is on the Autism Spectrum or adults who think they may be on the spectrum wonder if they should pay to seek a professional diagnosis. As parents who sought an official diagnosis, Cole and I are often asked how we came to that decision. For us it was quite simple. But for every parent and individual, the decision should be their own. Here I explain briefly our experience and our opinion.
The main reason we sought a professional diagnosis was because our son exhibited many of the autism characteristics, and we wanted him to get the very best help possible. We wanted early intervention, and the best programs required proof of need, aka. an official diagnosis. At the time, we lived in Idaho, which is a Katie Beckett state. With the diagnosis came free funding based on our son’s needs, not on our income base. In other words, we were not penalized for making “too much money,” which doesn’t take much if you’ve ever applied for Medicaid funding. However, even without Katie Beckett financial assistance, which was used after our primary insurance was first billed, we needed a diagnosis to even get on waiting lists for therapies and programs.
Our son participated in early-intervention preschools and several therapies: occupational, speech, and physical. He also enjoyed adaptive equine therapy and a variety of special-needs sports. When he entered elementary school, he was already “in the system” and received needed support services to assist him as he mainstreamed into regular classes. None of this would have been possible without an official diagnosis.
I once had a mother, whose child was in desperate need of a diagnosis and had apparent behavioral issues as well, ask me why I would want my child to be labeled. While I understood where she was coming from, I gently pointed out that without a correct diagnosis, her child was already being labeled as combative, inattentive, uncooperative, rude, and some other things that were much worse, in my opinion, than a medical diagnosis that would bring help. She had him tested soon thereafter, and he began to receive help. But they had missed his earliest, formative years when much progress could have been made.
Obviously, diagnosis in older children is less helpful. Personally, I would be hesitant to seek a professional diagnosis in later teen years when insurance, school, and public programs cease to offer assistance. According to recent chats in Facebook groups, so not too official, a ballpark price range is $500-700 to pay for the diagnosis. As an adult, you’d probably only get one for personal information–for you, if you’ve always wanted to know. You can certainly read up on the symptoms. I don’t recommend self-diagnosing, but you can ask trusted family members if they see the traits in you. Recognizing that you might or probably have it would then lead you to learn effective coping skills, which is the goal for anyone on the spectrum–official diagnosis or not.
One last thing, I highly recommend seeking an official diagnosis from a licensed professional who specializes in autism. Your pediatrician can likely refer you to someone. If they can’t, consider getting another pediatrician. Don’t rely on the school district to test your child for autism. They often won’t do it, or if they do, their testing may not be extensive. It will be free but not extensive. I do not want to make the school districts out to be the bad guys; they certainly are not. But they do not employ highly specialized autism professionals to administer those tests. I know of kids that they said are not on the spectrum and I wonder–as I hear their moms describe how the children flap their hands, have sensory issues, and so forth. When seeking an official diagnosis, seek a professional to do it. Your child’s future academic development and success depends on it.
Parents, please weigh in? To diagnose or not to diagnose–that’s the question here.