For today’s Ask Dr.Mom post, I have turned the table and asked my own questions of Cheryl from Little Bit Quirky. Cheryl chronicles her journey in parenting her daughter who has Asperger’s Syndrome. I have been reading Cheryl’s blog since I came on the blogosphere and love reading her honest, funny, and heartfelt posts that truly celebrate her daughter…quirkiness and all.
Q: At what age was your daughter diagnosed with Asperger’s?
She was diagnosed at 4.5 years old. I started thinking something was up when she was 3.5, but her teachers, pediatrician, and others kept telling me that she was fine!
Q: What were the first signs of Asperger’s your child showed? How old was she?
Looking back, she first started showing signs at 9 months. She would cry when things didn’t go the way she wanted them to. For example, if we were looking at birds on our deck railing, but then they flew away, she’d cry because she wanted them to stay. Things that would cause her to cry increased over time. By 15 months, it was obvious that she hated any type of transitions.
Q: What is the main difference between Autism and Asperger’s?
Asperger’s is really a form of autism (the official diagnosis of Asperger’s is going away in 2012 because of this confusion). However, the main difference between Asperger’s and high-functioning autism is when speech is acquired. Kids with high-functioning autism are speech delayed while kids with Asperger’s tend to develop speech on time. In fact, many actually have very advanced vocabularies. However, while kids with Asperger’s might have advanced vocabularies and the ability to form complex sentences, they still have difficulty with communicating. Having a two-way exchange can be very difficult for someone with Asperger’s.
Q: So your daughter technically has high functioning Autism?
This questions is more complex than you might realize! While Asperger’s is generally considered to be on the high end of the autism spectrum, it has its own degrees of functioning. You CAN have someone who has Asperger’s but is lower-functioning. The book, “The Curious Incident of the Dog in the Night-Time” featured a boy who is commonly referred to as having autism. I actually think he had pretty low-functioning Asperger’s. In my daughter’s case, she has VERY high-functioning Asperger’s.The psychologist that diagnosed her believes she may even be off the spectrum some day. For awhile, I thought that meant that she’d function just like everyone else. But now I’m realizing she’ll still have autism, but she’ll have ways to work with it. She’s already developed amazing empathy, and the ability to put herself in other’s shoes. Technically, this may mean she’s already off the spectrum. However, she’s still dealing with coping skills when things do not go her way. Socializing with other kids also does not come naturally to her, and she still struggles in this area.
Q: Do you believe vaccines played a role in your daughter’s Asperger’s?
No at all. It’s genetic! I look at my side of the family and I see other degrees of it, including with myself. However, I would never receive a diagnosis because I just have some mild tendencies.
I do believe some kids are “injured” when receiving vaccines. However, I think this only accounts for a VERY small number of autism cases. I believe vaccines are very important!
Q: What is the one thing you wish other parents knew about living with and taking care of a child with Asperger’s?
There are challenging days, that’s for sure! But I love the unique qualities my daughter has. She has this amazing brain, and I just couldn’t be more proud of her!
Q: How has your child’s pediatrician helped (or hindered) you in caring for your child?
My pediatrician is great in that he KNOWS he’s very ignorant when it comes to autism. He really tries to understand it better by asking me questions. He’ll support us in getting services by referring us to great providers and writing whatever letters he can so we get those services. He still doesn’t believe my daughter has autism, though. One time, when she was in for an appointment, he said, “Maybe she has Einstein Syndrome!” I just looked at him and laughed! After I was done laughing, I told him that it was widely believed that Einstein had high-functioning autism.
If I had one mission, it would be to educate pediatricians on identifying autism better. I think they have very limited training and only suspect problems with the lower-functioning forms of it. The higher-functioning forms CAN be difficult to diagnose, but pediatricians need to be better trained to identify what can be problem behaviors.
What I learned from my experience is that if you suspect something isn’t quite right with your child, listen to your instincts. Do not rely on teachers, doctors, or others for advice. You know your child better than anyone else. If YOU think something is wrong, you very well may be right.
Q: What is the best therapy or intervention your child has had or is receiving?
My daughter received behavior therapy that was amazing. It was a form of Applied Behavior Analysis (ABA), which is a popular type of therapy for children with autism. It essentially uses positive reinforcement to get a child to operate outside their comfort zone. For example, we first tackled my daughter’s rigidity. A behaviorist taught her to be more flexible when things don’t go her way. We started with having her get interrupted with a fun activity she was doing to do another fun activity that I wanted her to do. When she did this without crying, she’d get an M&M. She really enjoyed doing this and before long, I was able to pull her away from her preferred activity to help me clean the house! She was able to use this new skill in other areas. For example, she stopped tantrumming when her computer time ended (even when no M&Ms were being offered). This therapy essentially put in synapses into her brain that weren’t there before (I’m guessing). It was really amazing!
Does this mean she never tantrums when she has to end an activity? No, this can still be hard for her, but it’s SO much better than it used to be!
Q: What do you think is the biggest misconception regarding your child’s Asperger’s?
I think a lot of people think that people with Asperger’s lack creativity or a sense of humor. This is certainly not true!
Q: What is the number one most difficult thing about being the mother of a child with Asperger’s?
The most difficult thing is that my daughter has to navigate the “typical” world. This is a wonderful thing, but I hate seeing the other kids in her class snub her or look at her as if she’s weird. However, the biggest high I get is when they don’t look at her like she’s weird but interact with her as they do with any other kid. I saw a lot of that this morning, and I almost cried with joy.
Q: Why did you decide to start blogging about your journey?
I started blogging because I had a lot of spare time that I wanted to use productively while my daughter was at school. I want to both help other people who are going through the same thing and to help educate other people about high-functioning autism.
Q: How has Asperger’s affected your marriage?
It definitely puts extra stress on my marriage. There are additional expenses we have to take on. Also, we don’t always see eye-to-eye on what the best treatment options or approaches are. For the most part, I think we’ve worked out a lot of these issues and are working as a team much better now!
Q: What is your greatest fear regarding your child’s future?
My greatest fear is that she’ll be alone in the world. My husband and I married late in life and have no other kids. There’s a fear that if we die relatively young, she may be alone without friends. However, I really believe she’ll make her way in the world and have friends in her life and a very successful career someday. She’ll probably either be a cut-throat attorney or a scientist of some kind.
Q: What is the most endearing quality about your child?
I can’t mention just one! She’s beautiful and unbelievably smart! She’s been reading for 2 years. Now that she’s starting first grade, she recently had her reading level assessed, and she’s reading at close to the fifth grade level! She’s quite charming and fun–when she’s not tantrumming!
Thank you so much Cheryl for giving us a peek into your life in parenting your amazing daughter who happens to have Asperger’s. You have certainly become an expert and advocate for your daughter. I have learned so much simply by reading your blog and I know others have too.