Hi. My name is Kim. I have 2 girls, Sophia and Madison who were officially diagnosed at 16.
In high school, Sophia would have these bouts of meltdowns. Normally she would get out of them, but one in particular, she was 15, and she was in her bed acting like a two year old. Literally, not just figuratively, pulling the covers over her head, not talking. So I said, "Sophia, what's going on? What's bothering you? Is it your stomach? Is it this?" And she just said, "ehhh, ehhh". Just screaming, but no words.
So I called the doctor, and I pretty much said, "I think we need to take her to the hospital for a true psych eval, because I do not know what's wrong. I can't get to her." The doctor suggested we tried one final therapist first, which was a behavioral therapist and just starting her practice.
I met her twice and she said, "Has anybody talked to you about Asperger's?" "No." "What do you think? Would you consider it?" And I looked at what Asperger's was. And then I said, "Hmm, this actually really fits."
So we went and had them tested. and it came back as absolutely Asperger's. While we were going through the process, getting the actual diagnosis and going through all the parts of the testing, my husband was sitting there. And he's like, "I have this, too, don't I?" We all went, "Uh, yes."
So that was the diagnosis. That being said, there were definitely things I would have done differently had I known better. I took a lot of things that especially Sophia did as personal. She wouldn't want to go to the restaurant for my birthday or my husband's birthday or an event. And she'd just refuse to go. Sometimes we physically put her in the car and made her go. I thought she was very selfish that she couldn't give one day to myself or to her grandmother. Then of course once we got there she'd be miserable and make us all miserable.
Once I found Asperger Experts, things began to make sense. AE put their behaviors and their reactions into a language that I understood.
So I now understood that it wasn't me she was mad at and didn't want to go to the restaurant. It wasn't a selfish act. It was that the restaurant is painful. That the restaurant is loud. People are drinking. The lights are wrong. Whatever it is, it was just a bad place. She couldn't articulate that either. She just knew, when I go there, I feel like crap.
So I would say, "Hey, we're going to go to this restaurant. It's grandma's birthday. They picked this place. I know it's not a great place for you. Do you want to go?" And she'd say, "No." I would go, "OK" and I didn't take it personally. So I went and had a good time. And she could feel good about staying home and knowing that I wasn't mad at her.
It really opened up a lot. In understanding her, it took weight off of her. It also took a lot of weight off of me because I didn't take it so personally. So we could have avoided a lot of those situations and made a more sensory-friendly home.
One of the amazing epiphanies I had probably about two years ago was I always wished that the girls were diagnosed earlier so I would have been able to help them more.
From the perspective of the medical profession, from the second your child's diagnosed, you're told they're never going to be able to do much in life. "Hopefully they graduate high school." "They probably not going to go to college." "Doubt they'll get married and have babies." "You better have a lot of money because you're going to be supporting your kid for the rest of your life."
That's day one as a parent. How do you not put that on your child when that's all the information you're getting, that they're living to that lowest expectation? So I realized, in some ways, them getting a little later diagnosis, I didn't put any of that on them. We had our difficulties, absolutely. But I didn't have added "You're never going to...", on them. So I kind of changed my mind on that I wished that they were diagnosed earlier.
Note: This is an excerpt from our book "Navigating The System: Big Mistakes & New Perspectives". Get the whole book here.