Archive for Asperger’s syndrome

Our Son Had Asperger’s Syndrome…

June 4, 2012 Asperger's syndrome, Autism, Behavior, Evaluations No comments

And now, apparently, he doesn’t. We had the unofficial diagnosis from the school district for about 6 months before the developmental pediatrician told us he doesn’t meet the criteria. The school still uses the diagnosis as a basis for his services, but they have voiced their uncertainty to us as well. He’s three years old, so we don’t really know if any label will eventually stick.

Having the ASD diagnosis was scary and uncharted territory for us, but having the diagnosis taken away six months later makes the territory even less charted! Our son still presents with many of the signs of Asperger’s. He’s getting OT, sees a social worker, and will begin a speech group as soon as we can afford it. His behavior at home is troubling, frustrating, and we don’t know how to deal with it. We don’t even know if there is a “cause” for it – such as Asperger’s (or something else).

I know that labels don’t mean anything and that my son is complex (as every person is) and can’t be completely described by a single word like Asperger’s. But in some ways, labels do matter. Labels get you more services. And labels get you acceptance into a group. I don’t fully fit in with the “typical” moms; the issues we deal with are not the ones they deal with. But I kind of feel like we’re on the fringe of the ASD community – are we in that group? Do we need to be? Does it matter?

Who knows. All I know is that my son has struggles. And we are going to help him with those struggles however we can and for however long it takes because we love him and we know how much potential he has. And I guess that’s what really matters in the end.

 

Early Symptoms of Autism: What You Need to Know

February 10, 2012 Asperger's syndrome, Autism, Evaluations, SPD No comments

Photo by hepingting, Flickr

This topic is near and dear to my heart, as we have been struggling for nearly three years to discover if our 3-year-old has autism or not. It’s been a long journey that isn’t over yet (we still don’t have answers), but because we knew some of the early symptoms of autism (and didn’t take no for an answer), we were able to get early intervention help for Buki that made a big difference for him.

If you are a parent wondering if your child has autism: welcome. You are among friends. It can be scary and daunting to think about the possibility, but your child will remain your amazing wonderful child, whether there’s a label like “autism” attached or not. But the thing about autism is that the earlier it is treated, the better it is for your child. So it’s best to know and do something about it as soon as you can.

I’m going to first list the more “obvious” early signs of autism that you might find on any website. But then I’m going to share some of the more subtle signs we saw in my boy that clued us in that something was going on. I hope it helps!

If you see some of these signs in your child or you have worries about your child’s development, please take action! If your child is under 3-years-old, contact the Early Intervention program in your state (if you don’t know what yours is, this Early Intervention Contacts page should help). If your child is over three, contact your school district. These two resources will test your child free of charge and then help you treat your child if it is warranted.

Here are some of the main symptoms of autism in toddlers and babies:

  • Not smiling or happy expressions by age 6 months
  • No interaction back and forth with caregivers by sharing smiles, sounds, or facial expressions by 9 months
  • Not responding to his/her name by 12 months
  • Not speaking words by age 16 months
  • Not using two-word phrases by 24 months (repeating words back to you doesn’t count – it must be a meaningful interaction)
  • Doesn’t make eye contact with you
  • Doesn’t point at objects or wave goodbye
  • Doesn’t try to get your attention or respond to your attention
  • Doesn’t imitate your facial expression
  • Has a loss of speech or social skills

 

So those are some of the big indicators. But here’s the thing. My son, did most of those things listed above. He was, in fact, hitting milestones early. He was talking up a storm by the time he was 15 months old. And he did interact with us and smile and make eye contact with us. But we still knew that something was off. Here are some of the things we did notice about our boy that clued us in to the possibility of autism:

  • He did eventually learn how to wave bye bye, but we had to work with him pretty strongly on it, and it didn’t seem to come naturally to him.
  • He ignored us a lot. He did respond to his name, but only after calling it several times.
  • At around age 1, he stopped smiling. Before then, he was the smiliest baby in the world. But at age 1, he became serious and austere.
  • He had some “sensory” issues: He was deathly afraid of anything that made noise – the vacuum, the blow drier, the blender. This lasted LONG after most kids get over it (as in, he’s 3 now and still runs from the room when I pull out the vacuum). He also had to touch anything that looked like it had a texture. He climbed all over us and banged into us, so much so that I could tell he needed to do it.
  • He could speak a lot of words (by 18 months he was saying over 150 words), but we noticed that he wasn’t really interacting with us verbally very much. We would ask him a simple question and he would totally ignore us.
  • We also noticed that he was memorizing books and cartoons. At around 20 months, he could repeat back verbatim a Sesame Street skit he saw a few days ago.
  • Also around 20-22 months, we noticed that he had memorized the entire alphabet and could not only recognize each letter, but also knew some of the sounds they made. We never taught him or coached him on this.
  • His obsession with numbers and letters became…all-encompassing. At about 24 months, I would take him to a grocery store, and he pointed out every single number and letter he saw.

 

These are some of the main autism symptoms in toddlers that we saw in our boy. We weren’t at all sure that these things meant autism, but we didn’t want to take any chances. Early Intervention came and evaluated him at age 2, and although they didn’t diagnose him, they provided us with speech therapy, occupational therapy, and a lot of support. We saw many improvements in his speech and development that year, and we’re very thankful we called the Early Intervention team – despite what my doctor said, “He’s fine.”

Don’t listen to friends, family, or even the pediatrician if you suspect a developmental delay in your child. Listen to yourself. Nobody knows your child like you do. And the earlier you seek intervention, the higher chance you have of making a huge difference for your child. If you suspect your child may be showing some of the early symptoms of autism, seek help immediately. Call the Early Intervention program in your state for under 3 years old, and call your school district for 3 and up.

Evaluation by the Developmental Pediatrician

February 1, 2012 Asperger's syndrome, Autism, Evaluations No comments

We are taking Buki to the developmental pediatrician this week to finally get his formal diagnosis. I have so many different emotions right now.

First, it’s a relief to finally get this done. We’ve been waiting for months for this to happen, and we’re seeing the best doctors Chicago has to offer. That is comforting. It’s also great to know that we can finally get therapy started.

But also, it’s daunting and scary. I still hold onto that far-fetched hope that the school was mistaken and that a doctor will tell us it’s not autism at all. I know, it’s a long shot, and deep down I’m pretty sure it is. But I can’t deny that feeling is there.

With all of it comes worry as well. How will we afford to pay for all this therapy he desperately needs? How do I ignore all my fears about what the future holds and just focus on one day at a time? I love my son so much. He is one of the sweetest, brightest, and funniest kids I know. I just want the world to see that too.

The evaluation takes place Thursday morning. So if you’re a praying person or want to send positive vibes our way, it would be appreciated. Here we go.

Ho ho holidays

January 19, 2012 Asperger's syndrome, Autism, Behavior, SPD 4 comments

I know that Christmas is long over. Believe me, I know it’s already 19 days into the new year. But my family has been sick since about December 15th and we’re still feeling low (flu, colds, AND bronchitis), so I’m pretty behind. Heck, I don’t even know why I’m posting right now. I should be sleeping (and hacking up a lung).

But I wanted to write a couple of things about the holidays before I forget. Every year, my husband and I fly with our son to visit family. My husband’s parents live in Arizona, and mine live in Nevada. We somehow manage to spend time in both places. Every year, I swear it will be our last. This year, it really may have been the last.

Our boy (who is currently three) has Asperger’s Syndrome. Sometimes I feel almost guilty reading other autism blogs, because they seem to have it so much harder than we do. Yes, he has his meltdowns, and yes, once we’ve done something once, that means we will do it that way until the end of time. Yes, he has some quirks that make him special (and sometimes difficult to parent).  But on the whole, he is a good boy. We feel very blessed.

But. Then this Christmas happened. And I saw just how difficult things can be with my little boy. I suddenly realized that we can’t compare our lives to other people, because sometimes things are “easy,” and sometimes things explode in your face.

The night we arrived in Arizona at my sister’s house, my son cried when we took him upstairs to bed. Actually, he sobbed. “I want to go home. Let’s go get in the car and go home.” We faced about an hour of his meltdown before he fell asleep, exhausted. He did the same thing the next night. We had been planning to spend a few nights with my husband’s parents as well, but we quickly realized we should stick with one house and stay there at night.

Arizona was the easiest part of the trip. Once we got to Nevada and Buki’s cousins arrived, things got bad. Buki couldn’t handle sharing toys with his cousins. Every few minutes, he broke down in a meltdown and we had to take him back to our room where he would cry it out. After a particularly bad morning of him crying pretty much the whole morning, I had a brilliant idea – We get away from the family for a while and go to the park!

My parents live right next to a playground, so my husband and I took Buki to the park. I berated myself that we should have done this earlier. Until we got to the park and there were other kids there. And Buki got in shouting matches and had meltdowns right there at the park!

At that moment I pretty much lost it. We couldn’t stay at my parents’ house without him melting down, and we couldn’t even get away without him melting down. I felt so trapped, lost, helpless, and angry. And I felt sad for my son, who was clearly having a hard time and not enjoying himself at all.

I suddenly wondered: could we ever attend family events like this again? Will my son make it impossible to attend social functions? Will therapy help him with things like this? I cried, and fleetingly wished that he could be “normal,” and that we didn’t have to deal with situations like this. I desperately love my son, but I had reached my parenting limit that day.

The rest of the trip got better. My dad, bless his heart, called my son over to him whenever he started to melt down, and distracted him or took him elsewhere. He didn’t lecture my son about sharing toys or getting along with the other kids. He simply helped him stop melting down.

And then the cousins left with their families, and Buki was left with just his grandparents again, and he did fine. It’s just when other kids are around that he melts down. We survived this trip, but only barely. I’m not sure if and when we can do it again.

But this trip gave me the realization that we are squarely in the middle of Asperger’s Syndrome, and we can’t pretend otherwise. Time to start looking for therapists and moving forward. Onward. Upward.

To Tell or not to Tell

December 13, 2011 Asperger's syndrome, Autism, SPD 6 comments

At our son’s school evaluation in October, they told us he has Asperger’s syndrome. It wasn’t shocking news (we’ve had the question in our minds for over a year), but it did shock us. I don’t know who is ever ready to hear it. But the big question, now that we know, is which people do we tell about it? And by “people,” I mean close friends, acquaintance friends, his Sunday school teachers, babysitters, coworkers, or even strangers we meet at the park. We’ve told family, but so far, that’s nearly it.

Buki is three years old. In many ways he is indistinguishable from his peers. Kids this age display a variety of behaviors, and toddlers develop at different rates, so Buki fits right in most of the time. He is very verbal, he’s friendly, and he doesn’t have a lot of freakouts in public. (He saves those for when we’re home.)

So if we don’t tell people, they really aren’t going to notice. Some autism families don’t really have a choice in this regard. If their child is nonverbal or has other visible symptoms, then people already know that something is different. They still don’t have to explain the situation if they don’t want to, but they can’t avoid people noticing

On one hand, I feel as though it’s his life, so he should be the one who decides (when he’s older, of course) who gets to know about this thing that puts a permanent label on him. It doesn’t seem fair that others around him know he has a label before he even does.

And so many people don’t really know what autism or Asperger’s syndrome is. Or maybe they’ve heard some false information about it or hear the word “autism” and have Rainman or some other outdated stereotype in their mind. It seems unfair to my son to color other people’s view of him simply by using the word autism.

But on the other hand. As a parent, a significant portion of my time is spent thinking about and dealing with his issues. And so it seems strange to omit an entire portion of our lives from my conversations with friends. I want to share his successes! I want to vent about the whole afternoon spent on the phone with the insurance company. But I don’t. People don’t know about this part of our lives, so I don’t talk about it.

And at the same time, I want to be an advocate for children and adults with autism, and you can’t do that if you keep your mouth shut. People with autism shouldn’t have to worry what someone will think of them when autism is mentioned. So if people like me treat autism as though it is something to be hidden and ashamed of, then the world won’t change for the better.

It’s just difficult to know how to handle it. If anyone out there has any insight or has dealt with this question, I’d love to hear from you.

photo by Patrick Hoesly