I have to start with a disclaimer, but it is also the first thing you need to know about the Autism Spectrum. Here it is . . . all individuals on the spectrum are different. With a lot of things in life you can say “If you’ve seen one, you’ve seen them all.” This is absolutely not the case with PDD-NOS or the Autism Spectrum. The reality is more like, “If you’ve seen one individual with PDD-NOS (or on the Autism Spectrum), you’ve seen just one individual.” The Autism Spectrum is very broad and the characteristics, challenges, strengths, and prognosis of one individual with PDD-NOS may not look much like those of another individual. The information below is intended to be a description of what the disorder looks like in Grant, so it may not be true of another individual you meet or hear about who is on the Autism Spectrum. Likewise, what you know to be true of someone else, may not be true of Grant.
If you are interested in learning more than the summary below, Travis and I highly recommend the book Overcoming Autism: Finding the Answers, Strategies, and Hope that can Transform a Child’s Life by Lynn Kern Koegel and Claire LaZebnik. Reading this book was a turning point for me in how I viewed Grant and his diagnosis. Koegel is one of the world’s foremost experts on the treatment of autism. As you can see from the title she is very optimistic about the effectiveness of good treatment. LaZebnik is the mother of a boy with autism. In the book she shares her family’s experience with her son, now a teenager who is not easily identifiable as someone who was on the Autism Spectrum. The book is compassionate towards children with autism and their families, realistic about the hard work involved in treatment, and hopeful about the future of children with autism. Travis and I would be happy to loan our copy to anyone who is interested in looking at it.
What is the Autism Spectrum? In general the Autism Spectrum is a continuim on which a number of disorders are placed, with symptoms ranging from mild to severe. The commonality is that individuals on the spectrum tend to have difficulties in three areas: communication, interacting with others, and repetitive behavior/limited interests. Many people on the Autism Spectrum are also more sensitive to certain sensory inputs than most people (sounds, textures, images . . .). In reality, all of us probably have some symptoms that one would find in individuals on the Autism Spectrum, the diagnosing element is in regards to the degree to which those elements disrupt one's life. There is no biological marker used to diagnosis the disorders on the Autism Spectrum (no blood test, brain scan, . . .), so diagnosis is done through observation. At this point the doctors don't know the cause of these disorders and there isn't a general prognosis, because every individual on the Autism Spectrum is different. Something that I find helpful to remember when Grant is having a hard day is that he perceives the world differently than I do and his brain works differently than mine . . . not wrong, just different. Sometimes things that are no big deal for me, are a big deal for him—he is overwhelmed by different things than I am. (We should keep this in mind with all relationships, shouldn't we?)
What is PDD-NOS? PDD-NOS stands for Pervasive Developmental Disorder-Not Otherwise Specified and is on the mild end of the Autism Spectrum. Children are labeled with PDD-NOS when they have difficulties with only two of the three categories defining the Autism Spectrum (communication, interacting with other people, and repetitive behavior/limited interests). The “Not Otherwise Specified” part means that it doesn't fit into one of the other categories on the spectrum such as Asberger's Syndrome, Rhett's Syndrome, or classical Autism.
What is the cause? No one knows. There is some evidence that there is a genetic link. It hasn’t been isolated to any particular gene, but there tends to be a higher occurrence within families. Some people have suggested that the various autism related disorders are caused by vaccines, however most large studies have disproven this suggestion. There may be environmental factors. The number of people diagnosed has skyrocketed in recent years (as many as 1 in 100 children are diagnosed). The tricky part is that’s hard to determine a specific cause when you can’t isolate the specific physical difference between kids with autism and kids without.
Is there a cure? In the Overcoming Autism book, Koegel says that she never uses the word cure since we don’t even really know what “autism” really is—right now, it is just a collection of symptoms. But she writes, “we have kids who don’t have any symptoms of autism anymore, yes we do, lots of them.” That is our aim with Grant. It isn’t that we want to change who he is, but we don’t want anything to stand is the way of accomplishing and enjoying all that he has the potential to.
How does it affect Grant? Grant's challenging areas are communication and interacting with others. He does not have the restricted interests or the repetitive behaviors (although like all kids, he goes through phases of being fixated on one thing or another . . . right now he finds a special joy in numbers). Grant has had to work a lot harder than most of us to learn to talk. The same is true with developing social skills. Many of the things that come naturally or intuitively to most children learning to speak or learning to interact with others, Grant has had to memorize or work to learn. Some examples are making eye contact when interacting with people, conversation skills, asking social questions, and the nuances of language (he had a hard time learning to use pronouns, for example). Grant has developed the skills and interest in interacting with adults (although he still needs practice) and he is working hard on learning to interact/play with his peers. Because Grant has to work a lot harder than most of us to engage with other people, sometimes he gets overwhelmed in large crowds or if too much attention is on him. Likewise, because the communication part of his brain is somehow wired differently, Grant's speech is a little peculiar, although improving.
Early intervention makes a world of difference when dealing with the Autism Spectrum. While Grant was only recently diagnosed, he has been receiving intervention since he turned 2. We see the benefits of early and continued intervention on a daily basis. We see improvements in his communication and social skills everyday. Like many kids on the Autism Spectrum, Grant does have some some remarkable strengths that may be directly related to his PDD and the way that he learns. Some examples: Grant taught himself to read at age 3. He has an amazing memory—he remembers just about everything he hears (Grant has enjoyed memorizing vocabulary in other languages). He has a knack for numbers. Because he tends to memorize social exchanges rather than relying on intuition, he tends to be very polite and his phrases tend to be very positive. At this point, Grant doesn't pick up on criticism or mean natured things,so Grant has never said a mean word to or about anyone (by this I mean name calling and such)—his sister has taught him the power of saying “that's mine”, so he may pick up on name-calling at some point.
What are we doing to help Grant? I mentioned in my last post about Grant that he goes to preschool where he receives speech therapy, occupational therapy, and has a special educator help him develop his social skills. Beyond that I would describe our approach with Grant as being intentional about everything. For example, I do a lot of one on one work with him to exercise his attention span and practice conversation. We also seek out opportunities for Grant to spend time with his peers. We prompt him to make appropriate social interactions such as greetings and answering questions. We view his participation in the children’s choir at church and Sunday School as more than an opportunity for Grant to practice the faith of our family, it’s also a part of his therapy. We are very hesitant to skip a Sunday, because we know that this social time is important to Grant’s development. Our enrolling him in his gymnastics class was for much the same reason—it gives social practice and also requires him to focus. We also look for toys, books, and games that we think will help practice the things that are challenging to him. Our newest investment was a book and deck of cards about yoga for kids . . . Grant expressed interest in it and I had read some articles about the positive effects of yoga for also kids but more specifically for kids with ADD, ADHD, and Autism. (I have to say it's as cute as can be to see these little kids doing yoga!) Finally, we tend structure our days to give Grant the most benefit—giving him time to burn energy, be around other people, and spend some time alone, recognizing that he occasionally gets overwhelmed and overstimulated more than most kids. (This aspect probably isn't much different than anyone with small children, though.)
How can you help Grant? I wrote in my last post on this topic that the best thing that our friends and family can do for Grant is to believe in him and have high expectations for him. Here are some practical ways you can do:
*When you are talking to Grant, make it easy for him to give you good eye contact. Eye contact takes effort for him, so do what you can to help him out. Get down to where you are face to face with him, say his name if he isn't looking at you, and give him a little time to focus.
*Be patient in conversation. Again, conversation is a lot of work for him, though he is getting better at it. If you ask Grant a question, be patient in waiting for an answer as it sometimes takes him a few seconds to get the answer out.
*Understand that Grant is easily distracted. If there is a lot going on or if we are in a new setting, Grant has a harder time focusing on social skills. When you talk to him in such settings, it is particularly helpful for you to get face to face with him.
*Grant enjoys physical touch—he is the most cuddly kid I know. If you are someone who has a friendly relationship with Grant, feel free to hold his hands when you are talking to him. It helps him focus. Grant loves hugs from family and close friends.
*The more social contact and conversation, the better. Grant is an easy going kid who typically does not seek attention. This doesn’t mean he doesn’t want and need it. It is great practice for him! Talk to him and engage him as much as you talk to and engage Sophia. Good conversation topics include: what he likes to do, who his friends at church and school are, what his favorite things are (foods, numbers, colors, toys, cartoons . . .), what words he can spell, what he did that day . . .
*Don’t let him trick you. This kid is as smart as a whip. If he doesn’t want to do something, he will often act like he can’t do it. Don’t be fooled. While he does struggle with staying focused on a task, he is able to accomplish pretty much any task that any other four year old can.
If you've read this much you either have a lot of time and curiosity or you really care about Grant and our family. For most of you, I suspect it is the latter and for that I thank you! Grant brings great joy to our family, and we wouldn't trade him for the world! He is beautiful and has amazing gifts. I will admit, though, that having a child with special needs is a long, lonely and scary road. Having friends and family who care about us and cheer us on makes a world of difference. Thank you for reading this post!
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