Is it silly to be worried that my 12 year old son will NOT be diagnosed with autism, when he gets his assessment? I feel like if I say that to the wrong person, they will just think I’m eager to slap my kid with diagnosis’ and labels.
But after hours and hours of research, reading books, talking about it with my husband, and trying to understand my son, filling out assessment paperwork etc., they are going to come back saying “nope, he doesn’t have it” and I will think they must be out of their minds! And then I will feel like a crazy person for being so convinced.
Somehow over the last month I have taken so much comfort in all this reading on it because I relate to it! It feels like the world is saying “I see you” and I’m afraid the world will turn around and say “JUST KIDDING!”
Anyone ever felt like this?
In our case, we just wanted any diagnosis for our first son, who had just turned age three at that time, seven years ago. We were not going to accept statements like, “Boys will be boys”, “He will grow out of it”, “That’s typical picky eating behavior for his age” or “Give it time.” We were not about to wait or be blamed anymore.
As proactive and vigilant parents, we knew something did not seem to make sense when he refused to eat nearly all solid foods and drinks for that prior year, no matter how calm we were and the repeated attempts, and when he had a need to daily line many objects up, instead of playing with them in typical ways, and when he was very delayed talker and extremely detailed, and noticed things I never could imagine.
The school system was called in by us to assess him, as we were told their team of professional medical experts could make some determination, after they had several hour long visits with him. They diagnosed the Autism, and we looked at each other and felt relief, as now we could research that, understand him better, and try to parent in ways that would help our child more.
Our second son, born about 2.5 years after our first son who had yet to be diagnosed at the time of his birth, so we just hoped the second one did not have very picky eating and have delays speaking later too. He had problems with feedings since birth, and later developed severe sleeping problems and hyperactive problems. After the first son was diagnosed, and after the second was still not speaking by age two, we sensed Autism in him as well, because at that age he had similar issues as the first.
Our first son, who just turned 10, is high functioning now, with regards to his Autism. He is gifted at Math, Science and singing. He is great with details, and is very polite and with slight sensory issues, and very little behavioral issues. Our youngest, age 7 now, is mostly nonverbal still, but he has improved much there the last 3 months. He can speak up to five words a day now. He though has more meltdowns, and is very into routines, is extremely sensory sensitive, and is very hyperactive. He was diagnosed with ASD and ADHD.
So, we hope you can find answers for your child. It is never to late to know. Parents often have just as much or more wisdom than many nonspecialist doctors these days, so if what the doctor says is not want you feel, and after that research, and as you would know your child more, then get a second and third opinion if need be. For our second child, even after pediatricians knew our first had been diagnosed by several medical persons with Autism, they could not put two and two together, after we kept mentioning the core signs and symptoms and delays that was not too different than his brother.
Those doctors were in no hurry to recommend any specialist, nor to screen, or to probe further, for our second child. It’s as if either the school system or insurance company put pressure on the medical persons to not diagnose too soon for this child, or the pediatricians lacked training about understanding or screening for Autism, or the doctors just were in denial, thinking we were just overreacting. Well, our second child did not talk at all at age three, had the same severe feeding and sleeping difficulties, inflexible routines, motor issues, and yet still no hurry to evaluate.
So, as there was no Autism specialist locally who was fair priced or accepted our insurance, we drove him four hours away, for a three hour assessment with a specialist for Autism and ADHD. Luckily he charged just $300 or so, as most locally wanted to charge on average $2500. Well, we knew by age two what our 2nd child had, much less age four. So, we videotaped the hand flapping, spinning, tip toe walking, wandering, lining up things, hands covering ears for sounds, picky eating, and hyperactivity, showed that to the doctor, and he watched this child sit in his stroller and refuse to get out, without hysterical crying, and who instead wanted to just repetitively click on a certain iPad app, and not want to finish it but start back over. He had no eye contact then either, and was in a zone, unresponsive even to voice to call out his name.
Each child and adult with Autism may present their own unique signs and symptoms though, and varying in severity, but some of the things I mentioned, along with other sensory issues, can be somewhat common for those with Autism. Research shows you care. And wanting answers shows you care too. Just assuming any doctor has the answer, when they do not see your child in all environments, and when they could be looking for something else, or assume something else, that is not realistic, regardless their training. They make mistakes all the time. Parents can be wrong too, but more often than not the vigilant and wise parents and knowledgeable parents are mostly right. Good luck with your attempts to get the truths!
