My youngest brother has Autism. He's 14 now, very "high-functioning", and wanting his driver's permit, heaven help us all! Since he's 14 years younger than me, I remember well the stages he went through as we realized something was wrong and the journey we went on to figure out how to help him.
Sam seemed like a normal baby. He was quiet and a good baby. He was cuddly and very cute! As he turned one, he started babbling and even said a few words. But as he neared 18 months and still had very few words, my parents started asking his pediatrician questions. Sam did not make eye contact. He "held onto" toys but didn't really play with them, and his favorite objects were electronics-he had his own personal fan and hair dryer. As he turned two, he stopped saying the words he used to. He pulled inside himself and we became objects there to serve him. If he needed us, he'd grab our hands and pull us to whatever he wanted, but he didn't communicate with us. My Mom says as she looked back, she realized key components, like joint attention, that were always missing.
There are many theories to Autism. I believe most of them! My parents feel that Sam was probably Autistic from birth. I feel very strongly that it's in my gene pool and that it's not a coincidence that it was the child that was born when they were both in their forties that is the one with Autism. We have friends that firmly believe their child was normal before his serious illness. Other friends believe their child was normal until their two year immunizations. Ultimately, I believe as a sibling and a speech therapist that the sensory systems in Autistic children overload more easily than other people's. Sights, sounds, sensations, pressure, temperature, smell, touch, tastes can affect them in a more potent way. They overload with that stimuli and withdraw.
Sam withdrew when he was two and we didn't hear another intelligible word out of him until he was four. In the meantime, he was first diagnosed with PDD-NOS, or Pervasive Developmental Disorder, Not otherwise Specified. It's under the umbrella of Autism and sort of a "lesser" diagnosis. The children who are diagnosed with this fit some of the qualifications but not all. Autism is diagnosed by watching patterns in specific areas of development. Specifically, speech and social language development and behavior are affected.
Around this time, a job opened up in Utah, and my family left Arkansas to go to Orem. This turned out to be a blessing in disguise for Sam. In Utah and Salt Lake Valleys, we found a wealth of resources for Autism. Sam's diagnosis was reclassified as Autistic Disorder. He went to a special inclusive preschool run by the state. He continued on to an inclusive Autistic kindergarten. During these years, Sam's language continually progressed. He received intensive home therapy in addition to school. We began by communicating through dots. Dots covered the house. If he wanted a movie, he touched the dot on the case. If he wanted milk, he touched the dot on the jug of milk. He progressed to using pictures to show what he wanted to and for us to help him understand what was expected of him. In addition, his teachers and my Mother worked with him in sign language. There was a classic time as words started to emerge after the pictures and signs where Sam had ice cream for breakfast for a week. My Mom couldn't deny him when he used verbal language! He learned to read through his old friends, electronics and his first reading words were play, stop and record! :)
Sam has continued to progress through the immense patience of my parents, the talents of his teachers and therapists and the blessings of our Heavenly Father. He has been fully mainstreamed except for additional resource classes since the second grade and now he receives no resource classes and is in honors classes! He was baptized when he was eight, holds the priesthood, and I believe he has a testimony. There are things he struggles with daily that I'm not sure we'll ever understand.
He went through a very difficult phase two years ago where he couldn't stand hearing music in the house. It was very overstimulating to him. Music is my mother's life so this was equally difficult for her to stop humming, turn off her music, and try to help him. Luckily, this has passed for the most part. When all of us kids and our families are at home, he often has to retreat to pacing outside to escape the noise. He has some irrational fears and pragmatic and figurative language will probably always be difficult for him to understand. However, he has taught our family so much and it is amazing the resources available to help treat and live with Autism.
I am no expert on Autism, but Sam has taught me most of what I know about it and I use that knowledge almost every day that I work.
Other Resources:
Autism Society of America
The Curious Incident of the Dog in the Night-Time - It has some language, but if you can handle it, it was like opening a door into my brother's mind!
The Out of Sync Child is another good book on sensory difficulties
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8 comments:
You say you're not an expert, but you are the closest thing to it! My husband happens to be an "expert" of sorts when it comes to Autism. He spent the duration of his graduate program working with the child psychiatrists and psychologists who are editing the DSM-V criteria for the autism spectrum (it's the book used to diagnose autism and other mental health disorders). In the mean time he worked at the William Hall Psychiatric Institute diagnosing autism, Asperger's, and other PDDs.
Thank you for sharing! Autism is so facinating. If anyone is interested we have a MILLION books we can refer you to.
I too am very fascinated by Autism and I loved reading this post. As a former school teacher, I have to admit I had a fear of teaching an autistic student because I felt like I really didn't know how to handle it. I didn't ever get the chance, but I know it would have really taught me a lot. This gave me more insight and bless you and all members of your wonderful family.
My cousin has Asperger's which, due to her very chaotic upbringing, wasn't diagnosed until she was in her teens, I think. She's incredibly intellectual but has very limited social skills. It's frustrating to everyone, including her, as she both gives and takes offense at every single family occassion. She's still getting therapy (and I assume she might always do so), but I wonder if it would have made a bigger difference if it would have been diagnosed when she was younger.
Wow! That was amazing. Thank you so much. I am a nurse, but my knowledge of autism is pathetic compared to you, and other people who have actually experienced it. However, I have worked with enough autistic children to recognize that your family has done an awesome job for your brother to be so high functioning. Kudos to you all!
Wow! Thanks guys! Skipper, that is so cool that he's working on the DSM-V!!! I'm a nerd, but I use that book in my everyday work!! In grad school, I worked in a clinic on "teams" with psychologists, speech paths and behavioral pediatricians and all we did all day was daignose Autism, ADHD, Learning Disorders, Behavioral Disorders, you name it! It was amazing!!
Laura, it's actually very common for Asperger's to not be diagnosed until they're older like teenagers. Asperger's mainly affects the social communication-usually they are able to communicate and have few "behaviors", so it goes unnoticed for many years. The youngest child I know of being diagnosed in my experience with Asperger's was seven. But Skipper's husband would know better than me! :) It IS unfortunate though, because we know that early intervention is key with any disability and we know that, like you said, your cousin is aware of her hurting people. When Sam does stuff like that, that's when he's self-injurious, he used to punch his head but now he mainly berates himself severely and it's hard to watch. The family has to have a tough skin!
Thank you for all your comments, ladies!
Wow! All I can say is Wow! That is very uplifting!
Thanks for sharing. I am TERRIFIED of this disorder. I just feel paranoid that there is really no way to prevent it for my kids. Our neighbors don't immunize their kids because they feel like it causes Autism and many other problems. There are so many philosopies out there...it's hard to know what to believe. It's nice to know that your brother is doing so well.
The other day my baby lined up the chairs in the kitchen and it freaked me out. I know there will come a time where I worry about her development since I'm so saturated with it in my family and work environment. It can be terrifying, but the bottom line is that twenty years ago, Sam would have been institutionalized as a young boy because he didn't talk and tantrums were frequent. Now we have so many resources, that he's doing well and may be able to go to college. Unfortunately, not every child can progress that far but the things they can do these days are amazing!
Natalie, not immunizing your kids is far more dangerous than immunizing them with the fear of autism. There is absolutely no firm proof that immunizing kids is linked to autism. that being said, I know people who are convinced that their child regressed starting at that point. However, the return of small pox or another devastating disease that doesn't disable but kill is far worse, in my opinion. I worried about this too becuase I know autism is in my family, but if it wasn't, I wouldn't worry one bit.
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