Tuesday, April 26, 2011

Our Autism Awareness

It is Autism Awareness month. People are lighting it up blue for awareness. People are walking to raise money for Autism. I want people to be aware of what Autism really is.  I haven't come out with our story or posted anything like this before.

We are right in the midst of everything Autism is. Yet I sometimes feel like we don't have a right to call it "Autism". I feel that what we are dealing with isn't really "Autism". I feel this way because, at times, my daughter is referred to as "high functioning" or "mild".  She wasn't even diagnosed until she was 9. She can play with other kids. She can speak in paragraphs. She is in a regular classroom.

It may just be that some of the awareness that is needed, though, is about the spectrum. Autism disorders are developmental disorders, not mental illnesses. Just like there is a range of IQs ranging from mentally handicapped all the way up to genius there is also an Autism range, called a spectrum.  All the disorders in this range can also be referred to as Pervasive Developmental Disorders (PDD). PDD-NOS (not otherwise specified) I don't want to say is "milder" because the severity of symptoms can be just as intense. However they don't have to have as many symptoms to be diagnosed. People view "Aspergers" as a high functioning Autism when really the biggest difference in diagnosing is just a lack of ever having a speech delay, so just as many symptoms could otherwise be there.  All the way to severe, classic Autism.

I am not an expert on Autism, Asperger's or any other PDD so I don't want to go into depth because I don't want to give you wrong information. I want to tell you a brief version of our story. I want you to know why my daughter (and so many others) wasn't diagnosed until she was 9 (and some so much later).  I am not sure how many other people have a misconception about what Autism is. I thought Autism only referred to children whose speech was very limited. I thought Autistic kids didn't interact much. I thought Autism was a disorder that included not being affectionate.  Autism can be all that and more.  Or Autism can not be any of that.  My daughter loved to snuggle and give hugs. My daughter talks a lot and interacts with everyone in our house. Nowhere in the diagnostic criteria for Autism is there anything about affection specifically.

How did my daughter end up diagnosed with Autism? It was actually with the mention of Asperger's that we took her for an evaluation. We knew there was an issue from the time she was 2 years old. Because of my misconceptions I never even looked up Autism.  We realized she wasn't going to outgrow the issues so had her evaluated by the school district at 3. With the information we were given we thought she had a developmental delay she'd outgrow. When the school was removing her from special ed because she was caught up, we had to find help elsewhere. We were still having issues at home.  We read books and websites on everything from auditory processing disorders and sensory processing disorders to obsessive compulsive disorder and oppositional defiant disorder. We looked into allergies and had her tested. We did food diaries and diets. No changes.

We couldn't get into a child psychiatrist so we tried a counselor.  The counselor said she needed to be evaluated first. We couldn't find a psychologist who was taking new patients so we started calling blindly out of our insurance book. The one we saw thought she needed more discipline and to be spanked.  We finally got a child psychiatrist to see her, he diagnosed her with ADHD. The school didn't agree. Things eventually improved with the addition of a non stimulant ADHD medicine.  We had already learned she could NOT take stimulants.  When that medicine stopped working things went back.  Bipolar Disorder was then added as another diagnosis.  Remember, psychiatrists deal with mental disorders usually.

We had the school do a full psychological evaluation and we were questioned about Asperger's. Since that was never mentioned before it was soon forgotten. Still having issues at home though, we took her to another psychiatrist for a 2nd opinion. This doctor also mentioned Asperger's and recommended an evaluation.  Being mentioned twice in 1 year set something off in our heads.

The problem with the evaluation is cost. Had we known it was what she really needed we would have done it from the start. We thought what they did was stuff we could get elsewhere, covered by insurance. The Developmental Pediatrician within 2 hrs of us was not on our insurance. It ended up costing many hundreds of dollars to be evaluated. That was actually cheap because we had so many evaluations from the school through the years that we were able to share with them instead of them having to do.  She was diagnosed with Autism, not Asperger's, because she previously had a phonological speech delay. If that wasn't enough her diagnosis was solidified by the school district and Department of Disabilities and Special Needs.

Most days are consumed by the frequent problems. Low frustration tolerance, explosive temperament, inflexibility, impulsiveness, etc are all issues we deal with. The more heartbreaking issues become overshadowed. The social issues are there though.

When you repeatedly get asked questions about her development things start to really stick out. My guess is that she was not even 2 at the time of my first memory. I remember her being at the playground with kids she knew well and her refusing to slide down the slide because the other kids were on the playground. She wouldn't even go back down the stairs because they were there. I had to go lift her down. I remember her being so excited about playing soccer when she turned 3 and then refusing to even go on the field because "people will look at me". I remember her at 3.5 standing next to me for nearly 2 hrs at the playground because she couldn't play with so many kids around.  I remember her at 4, hiding under the bench during open house at her dance class.

There were other issues too though. I remember her actually running away and hiding when she was in 1st grade and the girls in her brownie troop tried to encourage her to stand up in front of them to present her stuffed animal for their mock pet show. That same year I noticed that her social issues went past just the "shy" symptoms. I sat with her and some "friends" at school lunch and watched everyone interact.  That day I saw that she completely missed it when they were sarcastic.  I saw them change topics and her get stuck.

Don't get me wrong, things can be worse but she does deserve some privacy. Things can be normal too. She played with her older sister and her friends in our backyard. She went to regular Kindergarten and did perfectly fine. By Kindergarten she even played on the playground (though with only 1 other child). She got on the honor roll in 1st grade. She got into the gifted program in 3rd grade. She could do extracurricular activities if you found the right situation. She loves to be helpful. She loves to give hugs. She has a high vocabulary. If you saw her out you may never even take a second glance at her. Other days you'd take a second glance and decide she was just a brat, not that she had Autism. She really doesn't mean to be rude, she doesn't even know she's being rude. 

Now that 1 out of every 110 children are being diagnosed with Autism it is really drawing light to Autism.  When you are not effected by Autism it brings light to the word Autism, to the fact that there are kids effected by Autism.  It doesn't necesarily shine a light on what Autism actually is.  Autism can be severe, there are children who can't even speak.  However, knowing what else Autism actually is could help a child somewhere be diagnosed and receive help sooner.  New TV shows have started to shine a light on what Asperger's actually is.  TV shows like Parenthood, where he too was not diagnosed until he was school age.  People should know though that Autism is not always that much different.  In some cases it is hard to see the difference between Asperger's and Autism.  Autism isn't always a severe case you see on an after school special.  Right now, Autism is on the rise and Autism has no cure.

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