Finding our place, successes and setbacks in the school system. Chapter 11, late diagnosis. My name is Caitlin. I'm the mother of Xander, who was 15 when he was diagnosed with Asperger's.

I think he was diagnosed so late because he is so smart and really was not a behavioral problem. He wasn't causing any issues in the school system. His behavioral records looked fine. His grades looked fine, but they never looked at him socially for communication difficulties or any of that.

In fact, before he was diagnosed, he was tested in about the second grade, but they basically told me he was quirky. That's the exact words they used. He's quirky. Very smart, no behavioral issues, just a little bit of an odd personality. He's just kind of quirky.

So they pushed him along through the system. But when he got into middle school, I could see he was really struggling, especially with the writing assignments or anything that required you to express or use communication skills. He's very factual, so to write an essay or a paper, there was nothing there. He just gave you the facts.

High school is when I really started to see the anxiety part of it come out. The first time I reached out to the school was when he was a freshman. It was probably the second day of school. I noticed his level of disorganization. He was so confused. He was switching classes constantly. He had multiple notebooks to take care of.

His biggest weakness is probably executive functioning skills. He really struggles with trying to keep things organized and the timing and planning of when assignments are due. For example, in freshman year, they placed him in an honors English class, and he just could not keep up with the workload, which caused him extreme anxiety.

Also, with the rotating schedule, he couldn't figure out what day he needed gym clothes on. So I sent an email to the guidance counselor and got a very stereotypical response. It was along the lines of, most freshmen really struggle with this. He should just keep an extra bag of clothes in his locker. That was the kind of answer I got.

He was also playing football at that time, and he would get so distracted with everything else that he would forget to take his pads off. And so he would wear his pads home. That would be a problem because then he would need to get all that stuff back to school the next day, and it's hard to bring all that on the bus.

The level of stress was just unraveling him and doing so very fast. He would lose everything. He'd lose his lunch bag. He'd lose his glasses. He'd lose his calculator.

One time, he lost his glasses and wanted to get them back, but he had so much anxiety that he couldn't get himself to go to the office and ask for it. He tried to go and do it, but he just couldn't feel comfortable approaching people and asking for the stuff back. He was just super, super stressed.

All moms have great instincts, and I had this gut feeling that I was missing something. I kept trying to talk to his guidance counselor, and I kept getting pushed off and pushed off. They wanted to see the previous evaluation from second grade, and it took me forever to get them to look at it. But then, I finally got a meeting in January. So the time frame is between August and January just to get a meeting.

In that meeting, there was talk of putting a 504 in place, but they wanted to wait and evaluate it more in March. I do think that if he was not passing his classes and was being a disruption in class, they would have taken more action in addressing these things. But he didn't fit what was on paper, and so he fell through the cracks. It's also a huge school. There's probably between 400 and 700 kids per graduating class, so maybe they were already stretched too thin and just didn't want to deal with it.

Finally, it was getting towards the end of that school year and we just got lucky. To provide some context, there are two school psychologists, the one that Xander was able to occasionally see who was on maternity leave, and another one. She encountered Xander in the hallway fooling around with somebody or something, but as soon as she approached him, he froze and almost couldn't speak.

She thought that he was part of the special ed program and was already receiving accommodations. We had another meeting with the school later on the week before school ended, and because the other psychologist was still on maternity leave, she actually ended up filling in as the replacement and shared her one on one experience with him and how he behaved in the hallway. I think that was the turning point.

A little help. With all the anxiety that he was having going into his sophomore year, we got a therapist. The school really hadn't done a whole ton yet, and I really was starting to think that I might have to get a lawyer or sit in and observe because I was getting nowhere.

Then, Xander's therapist had me fill out this letter to give to the school that had specific language in it saying that you are aware of the Disability Act and are requesting your child to be tested. As soon as I sent that letter, he had an appointment probably within two weeks with a pediatric neuropsychologist. He went through eight hours of testing while he was there.

At the very end, the doctor called me in and told me that we have to fill out the paperwork and get a final report together, but I can tell you now that the report is definitely going to show that he has Asperger's. He also said, I cannot believe that the school let this go on for so long. This is not a close call.

This is not a kid where we're questioning whether or not he's on the spectrum. Not wanting to show eye contact, handwriting all over the page, executive functioning issues, intensely picking at his skin and scabs. There were so many signs that he required additional services, and it just didn't happen.

Oftentimes, you are just left in the dark with questions like, what is going on? Is there a name or a support group? So once you get that diagnosis it's incredibly validating and almost a relief. It's like, oh, OK. This is what's happening, and this is what it's called.

I also want to mention that really before the testing happened, the therapist asked him what he thought about when he laid in bed at night before he fell asleep. His thought was, why bother? He was getting to the point where he was becoming suicidal because he thought he was just not going to get anywhere.

Thank God his therapist helped me with that letter. He's extremely smart. He's naturally kind-hearted and the sweetest kid you'd ever meet. To think that he was suffering horribly and had almost gotten to the point where he had given up absolutely breaks my heart.

New beginnings. He has made significant progress. We've continued with therapy with his therapist. We started utilizing some of the extra services to help with getting assignments turned in.

He didn't fail anything in high school. He did very well in school. He was in a social skills group to try to teach him how to make friends, and I ran across something that said why teaching social skills won't work. That's actually what brought me to aspergerexperts.com.

I started to read more and more on the site, and I was just, oh, my gosh, this is my kid. His therapist went ahead and ordered the course Deep in Defense Mode, and we went through it with Xander together. That was a shifting point because it really made us understand the way he felt about things.

For him, things are often too loud and too bright, too hot and too cold. When things are sensory heavy, it's hard to pay attention because the senses are so overwhelmed, it's distracting. So we worked on getting out of defense mode, and that's when he got more comfortable with himself, and socially, he skyrocketed. I think as he became more at ease with himself and understood more of what was going on and why certain things were difficult for him, it really boosted his confidence.

In his junior year, he didn't come home from school one day. He always responds to texts right away, so I was really worried. Later on, he texted me to pick him up from school at 4:15, and it was so unlike him. Did he get into trouble? Did he have to stay after class?

So I hung out in the parking lot, and eventually, he came outside. Turns out, they started a gaming club at school and he decided to stay after for it. I was shocked. They played video games, board games, Dungeons and Dragons, and for me, this was another positive turning point in his life.

High school is now over, but for about four years now, he has had this group of six or seven decent friends that he hangs out with on a pretty regular basis. Sometimes, either they'll come over here or they'll go over to someone else's house, but he has this group where they all share the same lingo and interests. My hope for the future is for him to be independent, and he's getting there.

Nowadays, he drives. He's a very cautious driver. He goes to a community college where he takes three classes at a time. The switch to an online format has been a bit difficult for him because of the high level of organization it requires, although that's a different story. He's also working on getting a job through a state program that helps him with the interview process.

My true belief is that Xander is such an out-of-the-box thinker that what he is going to do may not even exist yet. I think the universe is going to change around him. I don't know what his job or career will be, but whatever he does, I think he's going to be fantastic.