Chapter 5, "Teenage Girls and Late Diagnosis."

My name is Kim. I have two girls, Sophia and Madison, who were officially diagnosed at 16. They're twins. So when they were little, a lot of things were masked in the sense of, is this a twin thing?

Starting with when they were going to preschool at three, they had major separation anxiety from me and cried and cried when I would leave them. But then after I left, they actually had a great time and loved school. I mean, when I picked them up, they were happy. They were playing. But that initial separation was really, really tough.

By accident, I was late one day. So the way it worked is that you would drop them off. And it was free play time. And then after all the parents dropped off, they would bring them inside. Anyway, I was late, and they were already inside in circle time.

When we walked in, the girls just walked right in and sat down. There was no crying, no "Mommy, don't leave." And I went, hmm. And so I called the person in charge. And I said, Marie, can I come this time tomorrow instead and see what happens?

So what I realized was that the free time was just too overwhelming. Them knowing they could come in and sit down and know what was expected was less overwhelming. As we started having play dates, they would parallel play. Again, I didn't know if this was a twin thing.

So instead of inviting two friends over, one for each, I would invite one so they would play together. Otherwise, the two girls that we would invite over would play, and my daughters, Sophia and Madison, would play.

Madison always had a problem washing her hands since she was little. She didn't like to wash her hands. She had to have the same soaps. So I would put together a little packet for her when she started kindergarten. It consisted of Purell and waterless soap so she would wash her hands.

I had no idea about the sensory stuff of water and soap and slimy feelings and all those things. It was just more practical for me. I had to ask myself, how do I get my child to wash her hands? So I just gave her what she would use.

As she got older, the comments in school from their teachers were always, they don't participate. They don't raise their hands. They're so quiet. They're so shy. And I just took it as they were shy. But their grades were good. So they were obviously getting things even though they weren't participating.

So a lot of the signs of Asperger's were there. But Asperger's wasn't in my wheelhouse at all. So there were no little checkmarks which would have happened had I known that there was such a thing as Asperger's.

I didn't know until Madison was in high school that she was selectively mute at school. The teachers were saying, your daughter's really quiet and not participating. No one was saying, your daughter's not freaking talking at all. She carried a whiteboard around with her at school to communicate in middle school.

No one shared that with me. I had no idea, because when she came home, she talked. She was extremely articulate. But I didn't even see the Madison that was at school. I mean, it baffles me.

Madison always had tactile issues. Clothing had to be the right way. Her socks had to be the right way. And I just went with it. We just bought her really soft close.

Things started to escalate with Sophia at school. And so she was diagnosed with anxiety, depression, and school refusal. What we now know is that she was having sensory issues at school, not just her Crohn's disease, which was also an issue at that time.

The way she processes her work, she explains she has to read something in full. So when you get an assignment to read a story and then answer questions, she can't do that. A lot of us can read it and answer the questions as we go along. She has to read it and then look at the question, answer that question, and then she'll read it all again, and answer the next question.

So it takes her a much longer time to do the assignment. It would take her six times as long as it was supposed to. So the teachers would say she's lazy and she's not doing her work. But we didn't have all this information.

Getting the girls properly diagnosed. Fast-forward to high school, and 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.

And so I said, Sophia, what's going on? What's bothering you? Is it your stomach? Is it this? And she just said, eh, eh, 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 said, 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 just refused 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. And 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. And 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 a medical profession, from the second your child is diagnosed, you're told they're never going to be able to do much in life. Hopefully, they graduate high school. They're 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 wish that they were diagnosed earlier.

Our school journey. But the diagnosis wasn't the biggest issue. As I said, school was a big problem for both of them. When Sophia was 10, that's when she was diagnosed with Crohn's disease. She was very sick, but we were trying to get her to school as much as possible so she wouldn't fall behind.

And she was really refusing to go. We noticed that when we would bring her to class late, this one teacher in particular that she had would literally roll her eyes when we walked in. We realized that this teacher is just not happy that Sophia's there, doesn't want to give her the extra help and reassurance she needed. So she started staying home more and more.

So I tried working with the school. They called a meeting. I didn't know what this meeting was. It was an IEP meeting. I didn't know what an IEP meeting even was. I thought they were there to help me and guide me and they were the experts, that they'd been through this.

Basically, they told me what a horrible mom I was and that what I was doing to my child was such a disservice and that I needed to get her to school, or they were going to have to be calling social services. And so I asked, OK, but how are we helping my daughter? And they're like, it's really-- you've just got to get her to school.

And so I said, so let me get this straight. I should just bring her kicking and screaming? And you're going to handle it? And they're like, no, you have to get her under control before you bring her. And I'm like, well, I'm not able to do that.

Now, outside of this meeting, a teacher berated me in front of Sophia and basically told me, you're doing your child a disservice. You're not being a strong parent. You need to show her that she needs to be here. She has school phobia. And the only way she's going to get over this is if you keep bringing her to school.

So I stopped her, and I said, OK, let's assume that you're right and this school phobia is real, OK? It's a made-up word. But let's assume it's a true thing. My child physically falls apart when she comes to school. Is that not real? Is that not something we should be discussing?

She just looked at me. And I said, don't answer. How do I get her out of this school? Because if you're coming from that approach, she can't be here. Luckily, I had met someone that was an educational specialist. And I reached out to her and said, how do you homeschool? Because I don't even know what to do with this.

And she goes, so why are you trying to homeschool her? She should be on home hospital care. And the school district will pay for a teacher to come to the house. The schools were not forthcoming with any of the information that could have helped me and Sophia.

As a parent, you need to know everything. And I didn't. You have to be experts at school and IEPs and all of this stuff. And when you start, there's no way you can, right? And I became an expert pretty quickly.

And so Sophia was on home hospital care for a year and a half and had one-on-one, basically, homeschooling. The school even fought us. She's extremely good at math. And she got an A in math in fifth grade. Her teacher at the school still had to sign off on all the work and would not sign off that she got an A. She said, I'm sorry. She's not an A student. And the teacher that she was working with was, like, yes, she is. It's fricking fifth grade, OK?

And I looked at Sophia, and I said, Sophia, we all know you got an A. Can we just move on and get to middle school? And she said, absolutely. But even those kinds of things the school fought us on.

When she got to middle school, they worked with us a little more. Again, we did not have the diagnosis of autism. So her accommodations were all based on her Crohn's disease and anxiety.

They let her go to school for three classes and home for three classes. She did it modified, and it was through the district until we found a private school that really supported her until they didn't as well. They supported her all through middle school, which was fantastic.

And then in high school, there were a couple teachers that flat out told her, you don't have autism. You don't have Asperger's. You need to do all the work. And they would not follow her accommodations. No teacher should have the right to tell you, you don't have x, y, or z. That's just absurd. And she was told that by several teachers.

So schooling, though she was brilliant, was very difficult. She did well with teachers that accepted her and didn't do well with teachers that didn't understand her.

Experience with ABA and other therapies. So we got the diagnosis of Asperger's. After all this time of struggling and trying to figure out who they are, I was so excited as a mom. I got this diagnosis. I can let go. They're going to give me a plan. Take them to this. You're going to do that. This is going to be great. We know what to do.

I let go of the wheel. I was tired. I was exhausted. I was relieved. Someone else was going to be managing that part of their lives. And I could take a little bit of a back seat. I no longer did my homework the way I normally did, because they're the experts, right?

So at 16, they started ABA therapy. We had this lovely, sweetest English girl who came to our house once a week, sometimes twice, depending. She would do an hour and a half with Sophia and an hour and a half with Madison. And they started to regress. It was sticker charts and keeping charts of how many times Madison would bathe and she didn't bathe.

For example, I had to keep all these charts. And I felt like that's all I was doing was, OK, did you do that today? Did you do this today? How Madison explains it is that the goalpost kept getting moved. So we'll use her hygiene as an example.

They'd get her to bathe once a week. And she'd be all proud of herself. She did that. Now we're going to do it twice a week. OK, she did it twice a week. OK, now we're going to do it three times. And she's like, OK, three times is good. I don't want to do it anymore.

No, no, no. We're going to do it. You've managed it three times. Now we're going to do it for four. We're going to get you doing it every day. And she's like, no, you keep changing the rules. I attain a goal. We met it. I did it. And she just refused. She just said, I'm not doing this.

What I found is they kept asking me, what do you want the girls to work on? Well, I had my checklist as a mom. We all do, right? I want them to clean their room. I want them to clean up after dinner. I want them to bathe. I want them to do their homework without arguing. I had my list as a mom, but it wasn't their list.

So after almost nine months of this, I sat our ABA therapist down and said, this is not working. And she agreed. She goes, I don't know why it's not working. Honestly, they're the oldest kids I've ever worked with. I usually work with little ones. But you're right. It's not working.

So then I had to go back to my researching and figuring out how to help them. And through my searching on the internet, I found Asperger Experts. And like, I said previously, AE resonated. What they were saying, it was like light bulbs went off.

I think the first things I did was to go through the courses. I just started doing a little bit of my changing and saw differences so quickly. I showed my daughters a couple of the videos. And then an AE workshop popped up that they were doing in Boston. My whole family is from Boston. We love Boston. So it was a great excuse. And I said, let's go.

That weekend was so magical. Sophia felt so empowered and so heard. The reaction she got from everyone there really changed her and helped her to understand herself. We were hooked.

We've talked a lot about my daughters. But I also had to do my own work. I had to look at myself and all the things that I had done with love, all of the putting them through ABA therapy, putting them through traditional therapy, and reading the books. It was never out of malice.

But what I came to find out is that everything that I was doing and reading was counterproductive and was actually doing a lot of damage. So I actually asked the girls for forgiveness and talked to them about where I was coming from in those places. I said, I realized that I hurt you and I made you extremely uncomfortable. And I'm sorry for that. Now I know better. I want to do better.

So that was really cathartic for me and for them. Madison says that conversation changed a big part of our relationship. Hearing it out loud, our kids may know that we love them and we don't want to hurt them. But actually saying it and owning that we make mistakes as parents, I think it's so important for them to hear it and that we're trying to do better.

So here's my message to other parents. You've got to get that noise of that diagnosis out of your head. Get all those experts that told you they're never going to graduate from high school, go to college, get married, et cetera, out of your head. Instead, look at what they're really good at. And what are their strengths? How can we build upon those? And how can I change the way I parent to help elevate that?