Should I refer to my child as having high-functioning aspergers or high-functioning autism? Years ago, my initial response to this question was, “Does it really matter?” Today, I still don’t think the specifics matter much because the needed treatments and coping skills are largely the same for both. In a nutshell, autism has a language delay, while aspergers supposedly does not. Even then, it’s a gray area, in my opinion and based on my son’s experience.
I’m no professional expert on this matter, but I am a mom who loves her child–who happens to have autism, aspergers, or whatever it might be called in the future. I’ve long had a sneaking suspicion that my son’s diagnosis of high-functioning autism will change someday. No, I don’t think he’ll be cured, and I’m not in denial. Let me explain.
The Diagnosis Procedure
Our son’s professional diagnosis consisted of us as parents filling out a few forms, answering questions about our son’s abilities or lack thereof. We also asked a few of his school teachers to fill out some forms based on their observations. We turned those in to Dr. Autism and he read them before our consultation. We brought our son in for an in-person observation with said Dr. After a 20-30 minute observation of him and a discussion with us, Dr. diagnosed our son with autism. That was it. Honestly, it felt like a chat, rather than an appointment for which we paid several hundred dollars. And no, the Dr. wasn’t a quack. He was quite brilliant and probably on the spectrum himself, by his own admission.
What was I expecting? Oh, I don’t know. An MRI? A blood test? Something concrete. Maybe someday the diagnosis will be more definitive. Do I feel like our son’s diagnosis was or is a hoax? Absolutely not. To this day he hand flaps, hums, and stims, but all three behaviors have diminished over time. He used to not make very good eye contact, couldn’t tolerate the noise of group activities, and wouldn’t touch the grass with bare feet. He also preferred to play alone. He still does. And there were and are other symptoms.
Was his diagnosis a shock? Actually, no. Both my husband and I had suspected it and, like everyone else on the planet, researched symptoms on the Internet. So we both knew. We’re also religious and felt inspired that this was our son’s path in life. I’ve never questioned that his brain and body are wired differently from “normal,” neurotypical people.
Why Differentiate the Diagnosis?
I’ve just questioned why people spend so much time splitting hairs, trying to decide if it’s autism or aspergers. The coping skills, for instance, that you teach someone who has either disorder are largely the same. Or if you’re going to alter your child’s diet in hopes of seeing improvement, you’ll likely do the same food plan for either assessment.
Possible language delays, in my opinion, are common for both. For several years my son struggled to understand the meanings of the 5 W’s: who, what, when, where, why (and how, if you want to count it). He worked diligently with speech therapists for a few years to help him understand language better. He has always been verbal but parroted a lot of what he’d heard (echolalia), not really understanding what he was saying. We had to really help him discern the proper context for his memorized phrases. Gradually, the echolalia subsided, and he communicates his own ideas now. But some areas are still borderline for comprehension standards.
So when I later pressed Dr. Autism for clarification on our son’s diagnosis, he simply advised, “Call it autism when you’re seeking help, like therapies, for him.” The autism diagnosis seems to carry more weight when a parent is seeking help for their child. For example, on all of our son’s medical forms, we list autism. That word, that diagnosis, also qualified us for additional help at school and in the community, for which we are forever grateful. Dr. Autism also suggested, “Call it aspergers when you’re explaining to family or friends.” If they know the term at all, they’ll likely associate it with higher ability and functioning. It seems to be a less-terrifying, more hopeful term.
Nowadays, the term aspergers seems to be diminishing. Professionally, it was dropped from the American Psychiatric Association manual in 2012. So you’re not likely to hear it in medical discussions, but it’s still used in our vernacular. Just google the term, and you’ll see over 12 million results.
Personally, I’m ok with high-functioning autism, autism, high-functioning aspergers, aspergers, or related developmental disorders, such as PDD. I’m more focused on getting my son help, so I’m fine to use whichever term will qualify him for potential training, one-on-one instruction, or whatever he needs to improve his abilities. Generally, solutions or helps for any of these terms are beneficial. The bottom line is that you need to educate yourself in order to help your child. I suggest researching all related terms and applying whatever helps you and your child. At the end of the day, that’s what makes the most sense.
How do you refer to your child’s diagnosis? Autism or aspergers? Reasons?