Autism. That one word can really throw people. It’s a simple word, that means a lot. A person doesn’t “have” autism, they ARE autistic. When you have something, it can be set down or removed (even if it takes a while to get there). When you are something, it is part of you, and admitting to that doesn’t lessen you as a person.
Erik has autism. We’ve known that for just over 3 years now. But I had inklings of something going on before he was 18 months. He was a late crawler. He always had low muscle tone. He didn’t communicate with words, either verbal or ASL/sign language (which I attempted to teach him) until after he was 4 years old. He was a BRILLIANT toddler. When he was 18 months old, if he disappeared, 95% of the time I’d find him sitting by the bookshelf with a book in front of him, saying the letter names one by one out loud as he “read” the book to himself. At 2.5 years old, he was reading out loud simple books. By 4 he was reading out loud words like “catastrophe” and “dictionary”. But he STILL could not communicate verbally. Reading was decoding. It was a fun game to figure out what that code meant. It didn’t seem to communicate anything for him, but he loved it anyway.
Right after he turned 4 we got him evaluated, because I was struggling with the lack of communication and his daily (often 10 times a day) screaming meltdowns. I was at my wit’s end, and had no idea what else to do. I knew autism wasn’t a “death sentence”, but I also had NEVER been around anyone who was autistic, and who was proud of that. Those I knew of, their parents talked like it was a failing they had to work through, or they did everything they could to hide the fact. Looking back, it’s SO SAD! How many hundreds of people (probably more like thousands and tens of thousands) have had to hide who they really are because it’s not “socially acceptable” to be autistic? I’m trying to change that for my son.
Erik has some autistic tendencies, but not many. His main stim is sucking on his fingers. We’ve gotten him “chewelry” to help with that, but he still prefers his fingers. And you know what? So did I as a child. I sucked my thumb for ages. And the process to break that habit was traumatic for me. Unless I absolutely HAVE to remove that stim, I won’t. I do encourage him to use alternatives in places that it will be considered unsanitary to suck fingers, but other than that, this is who he is and I’m okay with that. He sometimes still has meltdowns, but not so much anymore. The main issue still is flying insects. The sound of a mosquito, bee, or even common house fly near his head is enough to drive him insane. We have SEVERAL fly swatters, in every single room of the house, and he’s dealing with them better. But it’s who he is, and if hearing the buzz is enough to push his brain over the edge into meltdown, the least I can do is try to alleviate that by chasing down an errant insect.
It has to have been hard on Kent, watching Erik get so much attention for so long, while we tried to help him in his differences and delays. While Erik got to go to therapy twice a week, Kent had to stay home. And he was JEALOUS! Kent is a people person, and Erik is not. So for Erik to go out and Kent to have to stay home was a huge issue. Kent has ALWAYS had boundless energy. I’ve known for a VERY long time that Kent could be diagnosed with ADHD. People tried to tell me that he was just a “normal” kid, that I was seeing his energy emphasized because Erik was so low-key. Part of me wanted to believe them, but I also knew better.
As they got older, and Erik learned to deal with his differences more, I started noticing Kent’s difficulties. Reading has been a REAL struggle for him. He finally told me about 6 months ago that he could read just fine if the words would just quit turning around in his mind! LIGHTBULB! The child struggles with dyslexia! That helped SO much in understanding him and his difficulties with reading. I have NEVER pushed him to read more than he was comfortable with, but I was concerned that as much as he WANTED to learn to read, it was SO obviously difficult for him. I honestly didn’t change ANYTHING after that interchange and lightbulb moment, but something changed in him. He’s gone from not being able to read much at all to reading ABOVE grade level in 6 months.
Well, it wasn’t just the dyslexia. It wasn’t just the ADHD. I KNEW in my gut that there was something different about the way Kent’s brain worked. It was like Erik’s, but at the same time not. So I talked to our primary care doctor about getting a referral for assessment. Generally, recommendations for those referrals would come from a school teacher recognizing those issues, but I AM the school teacher, and I needed to know better what I am dealing with to be able to help him better. After a few issues with different providers and insurance issues, we finally got him in for evaluation.
The doctor that we met first was VERY respectful, gave Kent the respect he deserves as a child who knows how his own brain works, gave ME the respect as a parent/teacher to be able to articulate what my concerns were, and was very helpful in the intake appointment. As I knew all along, by the end of that first 90 minute appointment, the doctor diagnosed him with ADHD. He said there was absolutely NO point in subjecting Kent to the formal ADHD testing after his observation and the answers I gave to questions he asked. At the same time he recommended that Kent come back for autism specific testing as well as IQ and academic level testing, which I agreed to.
A colleague of the doctor did the testing, and she was SO good for Kent. She was respectful and he enjoyed the time he spent with her in the testing, so much so that he was disappointed when he was told we weren’t returning again. He spent two days with her, about 2.5 hours each day. She did an IQ test (WISC-V for those wondering), academic level testing (WRAT-4, which is how I know his reading is above level), the ADOS-2 test (a “gold standard” in autism testing, I’m told), the ABAS-3 test (ability to function in daily life activities, in relation to peers), and I filled out the ASRS DSM-5 questionnaire for things not easily testable in the office situation (like his refusal to eat 98% of food offered to him).
And then we got to wait. We had two weeks between the last testing day and when we returned for the results. All I can say about that time is that I’m SO GLAD we had a vacation already scheduled. It kept my mind off of wondering what the results would be, a little bit at least. Part of me was nervous they could come back and say it was all in MY head, that besides the ADHD he was an absolute normal child and I just needed to stop looking for issues since his twin had them. The other part of me was nervous that his differences would be diagnosed to be something much more complex than I could handle. And neither of those are good feelings!
When we went back for the results, Kent immediately asked to play with the LEGOs (he already had it in his head in the first 5 minutes it was going to be a very boring hour, and for him it was except for those LEGOs), and ignored us completey. The doctor beat around the bush for the first 10 minutes telling me about how his IQ is above those of his age range but that his academics don’t reflect him being as “ahead” as they would expect given his IQ and the fact that we homeschool. As he was trying to discuss nuances of what they found in the other testing, he finally just came out and said “I am diagnosing him with autism. He would probably be considered Aspergers on the scale.”
THANK YOU! It was SO much easier to process the information given after that point, because I wasn’t concerned anymore about being crazy or not being able to handle the diagnosis. In the end, he was diagnosed with autism and “ADHD, other: clinically significant ADHD symptoms in context of ASD” (which basically means that yes, he’s ADHD but that medication likely will NOT be a good fit for him). The rest of the information given was actually very informative, and I plan to use some of it in our homeschool. But to be honest, I had ALREADY figured out on my own those were things that Kent needed, and I already have the new curriculum that presents things “that way” on the shelves, and have had it there since BEFORE the initial intake interview. It was just really nice to have my gut feelings confirmed, and it will actually be beneficial (I feel) for him in the future to have the diagnosis on his record NOW.
This may seem like I’m downplaying the effects of these diagnoses to some people. Yes, having autistic twins can be difficult some days. But honestly, KNOWING why some days are difficult makes it so much easier to find the solution for that day, and help them through their hard times.
My twins don’t have autism; they are autistic. It’s not something they can set down and take a break from. They deal with their differences every single day of their lives. Some days they’re REALLY good at masking. In fact, most people who meet us have NO idea that they are autistic. Kent is the most social, happy-go-lucky child you’ll ever meet… until he’s done, in which case he’s DONE. Erik loves to be around people and show off his academic skills… until he doesn’t want to, and all he wants to do is go hide in a dark place (usually on his bed under a blanket, since we taught him that coping mechanism when we lived in a tiny apartment that didn’t have anywhere else private he could go).
Being diagnosed autistic isn’t a sad thing! It’s a description of how your brain works differently than what we consider “neurotypical”, which allows the autistic individual (as they get old enough to understand) and their parents to support them in their differences. CELEBRATE THEM!