#5 What are your favorite books on autism?

My two favorites:

1. Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child's Life. Lynn Kern Koegel and Claire LaZebnik. This book combines an expert's recommendations and a mother's comments to make a very readable, smart book.

2. Helping Children with Autism Learn: Treatment Approaches for Parents and Professionals. Bryna Siegel. Dr. Siegel's approach to education recognizes that each child with autism has unique strengths and deficits, and she offers strategies for using the strengths to minimize or work around the weaknesses. Practical, useful, and packed with information, Helping Children with Autism Learn is invaluable to parents and teachers of children on the spectrum.

Another book that isn't really about autism but is on my list of top five nonfiction books EVER is Temple Grandin's Animals in Translation. I couldn't put this book down and plan on rereading it soon. Grandin has autism, which she feels gives her a unique insight into animal behavior. A blurb on the back cover, from Nature, says, "At times, it is difficult to work out whether this is a book about animal behaviour with insight from autism, or a book about autism that uses animal behavior to explain what it is like to be autistic. A major achievement of the book is that it is both." I totally agree.

Need a Laugh or Some Hope?

My post on Questioning my Intelligence this week is about Jack and demonstrates his progress in speech. If you want a laugh (or some hope that speech therapy can work!), check it out HERE.

The examples I give of Jack's speech right now show several typical characteristics of speech development in autistic children: repetition, use of scripted language from tv/movies/parents for effective and appropriate communication, and the awkwardness of the emergence of spontaneous speech. Note how Jack's grammar is perfect when he works from a good script, but it breaks down when he's speaking spontaneously or writing his own scripts. He also demonstrates poor receptive language (understanding what is said to him), very literal understanding of language, and non sequiturs.

Although I don't give examples in this post, he has difficulty answering questions and will often ignore me if I press him to answer something that he either doesn't understand or doesn't care to talk about. He also uses scripted language (from his favorite movies) as a form of self-stimulation. He is learning to control his verbal stimming and limit it to "private time" rather than, say, as he is walking into school, but movie lines burst out at odd moments, particularly when he is transitioning or feeling stressed or bored.

Jack receives an hour of speech therapy a week (30 minutes at school, and 30 minutes privately). His improvement in the last three years is amazing, but he still has a long way to go.

Feel free to share your own experiences with language development in the comments!

#4 Who helped you the most in the beginning?

Before I get to the question, I want to thank all of you who have responded either in the comments or by email so far! Each comment has meant so much, and I welcome any and all who read this blog to put in their two cents whenever you have something to say. (tinamarie, please send me an email from my profile page with your email address...I think that will give me your email address in return.)

Now, to the question. For me, the two who helped the most concretely early on were definitely the developmental pediatrician and the child psychologist who evaluated Jack. We only saw the psychologist once, but she gave me the most useful, specific piece of advice we got from anyone...to get Jack into as many structured social situations with typical children as possible and not to do ABA with him. (Note: she was an ABA-trained psychologist.) She recognized his strengths right away, and gave us a direction for using them to tackle the weaknesses. The developmental pediatrician was so responsive, answered all our questions from the MD perspective thoroughly, and helped navigate the military medical system for Jack's best interests.

For moral support and encouragement, our family and friends were such a blessing. A couple of them went into denial ("There's nothing wrong with him!"--they eventually came around), but most were hugely supportive, listened to me talk my way to understanding it all myself as I explained "things" to them, and gave me and George and Jack the love and support we needed. Many asked questions, which told me how hard they, too, were trying to understand what was happening. The preschool director at our church, Kim, placed Jack into a typical preschool class with a PhD in psychology as his teacher. She was one of many angels who smoothed our way to setting Jack up in his treatment plan.

I remember reading horror stories of families falling apart or becoming estranged over autism, and of discrimination and lawsuits, and was terrified we would experience something like that. Praise God we didn't, but my heart goes out to those who were not as fortunate as we were. The beginning of this journey is so scary and so overwhelming, and I will be eternally grateful that there were so many people who said or did the right thing at the right time, or who just listened and responded with love. As cheesy as it may sound, they are a big part of the reason I want to write a book that pays their compassion and love forward.

So, who helped you the most in the beginning?

#3 What surprised you the most about autism in the beginning?

How did you overcome/deal with your surprise?

For me, the biggest surprise was the lack of a protocol for treatment. When I was dx'd with gastric ulcers, the doctor had a specific protocol to treat them. Ditto with my gall bladder. But for autism, a brain disorder, there was no protocol. I now completely understand why there isn't a protocol in place. Every child with autism is so different that no one therapy or protocol will help all children. Also, some things that we do now as "therapy" for Jack are really normal kid things, like gymnastics and school. I felt like we should be doing something more... I don't know... unusual!

It was left entirely up to me and George to decide what to do, and much of what I read left me more confused than before. The developmental pediatrician and child psychologist gave good guidance, but in those early days, I was really too ignorant to understand much of what they said or why they said it. The big picture did come together as we started doing "stuff," but I felt really lost and directionless at first--a very unhappy feeling.

Appendix C of The Autism Sourcebook helped a bit because it lists all treatments alphabetically and says what aspect of autism each treatment addresses. (The rest of that book totally freaked me out, though!) In retrospect, I really wish I'd read Overcoming Autism then. That book would have been a huge help, and it's my number one recommendation for anyone who's just starting this journey or feeling lost on it. Huge thanks to Karen D. for sharing that one with me!

#2 How easy/difficult was it to get the evaluations your child needed for a diagnosis?

What evaluations were done and by whom? How accurate and well-performed do you think the evaluations were?

In our case, I took Jack to a regular pediatrician (who turned out to be a student!) at the Wright Patterson AFB hospital and explained very calmly what we were concerned about and what his teacher was concerned about--I thought about what I was going to say ahead of time and made sure that I was clear and concise. At this point, I had no idea that autism would be a possibility, but in retrospect, I said all the right things to get the doctor's attention. That doctor asked me to wait and brought the developmental pediatrican into the discussion that day, which I felt was extremely responsive. The developmental pediatrician, Dr. Z, said he would work Jack into his schedule as quickly as possible; he saw Jack two weeks later for an initial evaluation. It took just three months to get all the evals done: audiology, speech, occupational therapy, child psychology. At the time, Dr. Z didn't have the testing materials for the ADOS, so we went downtown to Dayton Children's, where the child psych did the ADOS and nonverbal IQ test.

I felt all the tests except the speech eval were quite thorough and well done. The speech eval was done first and every specialist who saw it (including at the public school!) rolled their eyes at it. It basically said nothing. All the other therapists and the child psychologist were extremely good at explaining the results of their evaluations. Once Jack got into treatment, his new speech therapist did a very thorough evaluation so we had a much better idea of where Jack stood.

Much of our luck came from cancellations (speech and child psych would have taken MUCH longer, but I jumped when cancellations occurred) and the fact that Dr. Z knew how to pull strings and did so on our behalf. We were getting ready to move to Abilene, TX, at the time, but the doctor said services were better in Ohio, so he and my husband signed us up for the Air Force's Exceptional Family Member Program, which ensures that families with special needs are stationed in places where those needs are met. You can read the details in my essay HERE, if you're interested. (Scroll down a bit to get to the part about Jack's diagnosis.)

Jack's final diagnosis was Pervasive Developmental Disorder-Not Otherwise Specified, or PDD-NOS, mildly affected. By the time the diagnosis came through, George and I were both convinced that it would be PDD-NOS anyway, so we were not surprised.

Note: The public schools did not get involved until we had a diagnosis, mainly because of the timing of summer break.