Where do I start? There is no real point in time that I can point to and say “This is when my child developed autism”. Thinking back, I can recall times when I wondered about some peculiar behavior she had developed or why she had stopped talking. Everything I read or anyone I talked with said basically the same thing…”every child develops at their own pace”. “Don’t worry, just love her and nurture her – she’s fine”. But she wasn’t fine, and the older she got the more frustrated she became. Try to imagine knowing inside yourself what you want to say or ask for, but not being able to make the words come out right. For Lonnie, it became screaming and pointing. I found myself crying at times because I could not understand what she was trying to tell me.
Then comes the self doubt and feelings of guilt. Did I talk with her enough? Did I spend enough time playing with her and loving her? What about the tumble she took when she was 2, did that cause the problem? Was it because I did not take enough folic acid when I first got pregnant (but didn’t know it until I was about 10 weeks along)? Was it because of my age when I conceived (47)? The bottom line is no one knows what causes autism, so there will never be a clear answer as to what brought it on with Lonnie. The best I can come up with is that the more time and energy I spend trying to find an answer to these questions, the less time and energy I have to help Lonnie live the best life she can.
The most important advice I can offer is this: If you, as a parent, see your child having developmental difficulties, don’t wait to seek help. Early intervention can make a tremendous difference with any developmental problem, especially any that fall within the Austism Spectrum Disorder classification.
With Lonnie, everyday is a learning experience. I want to share some things I have learned; maybe they can help someone else in meeting challenges. Hopefully others will have things to share also.
Things that work:
Praise all accomplishments: No matter how trivial they might seem to you, it probably was a big hurdle for the child. Even if the child is not able to express themselves externally – they are internalizing the accomplishment and the praise. It gives them more satisfaction and encouragement than is apparent.
Establishing routines: Knowing what comes next seems to have a calming effect. Asking questions is very difficult for most people with ASD. Having a routine eliminates the stress of trying to figure out how to ask a question.
Offer “A carrot on a stick”: When Lonnie is resistant to doing something (like homework), I offer a reward or a consequence. (If we get your homework finished in time, we can take the dog for a walk. If we don’t get the homework finished, no dog walk).
Watch for strengths & talents and encourage them: Everyone has them, but for people with ASD, it can be a key to opening pathways you might never have considered. Lonnie has a special relationship with animals and dogs in particular. I am amazed at how well our dogs follow her “instructions”. Even other people’s dogs will respond to her immediately. She wants to be a dog groomer or trainer, but of course wants it immediately. When I tried to explain to her that she would have to finish school, she did not understand how long that would be so I told her she would have to be taller than me. So now she has me measure her height every day. It doesn’t matter that the measurement is the same every day, it is just another routine that lets her relate to a future event.
Lonnie also loves to draw and paint. I gave her a stack of blank paper and lots of markers and I now have drawings taped up all over the house. It gives her great joy and gives me an opportunity to talk with her about the pictures. Some are just colors, others are of Lonnie and friends doing things like riding horses or taking a nap.
Things that Don’t Work:
Logic: You cannot reason with someone who does not understand the concept.
Abstract Concepts: Lonnie lives in the “here & now”. She has great difficulty with “when” something is going to take place. She can name all the days of the week and the months of the calendar, but she does not relate them with the passage of time.
The same is true of money – she knows the denominations and the names of the persons on the bills, but does not understand where money comes from or how to determine how much something costs. She likes to run my debit card through the reader and knows how to enter the PIN, but this is just a routine she has learned that takes place before you leave a store.
I have managed to teach Lonnie to look both ways before crossing a street, but I still have to remind her to do it. She does not understand the importance of it. I have explained the danger of possibly being hit by a car, but she does not grasp “possibility”. For her, either something “is” or it does not exist.
Asking generalized questions: If I ask Lonnie “How was school today” her response is “Fine”. If I ask “what did you do”, her response is “I don’t know”. But if I ask if she worked on math today I usually get a response “yes” that I can build on like “Did you do subtraction?”
If I ask “What do you want to do today?” I get “I don’t know”. If I ask “Do you want to go to the park?” I get “Yes, can we take Lady? (our dog)”.
Lonnie is almost 11 now, and fairly high functioning. She has a modified curriculum at school, but is in a regular classroom. She gets extra help from therapists and others trained to work with special needs children. She does have her own quirks and her own way of doing things. She presents challenges for us every day – but what a joy she is!
; Emergence: Labeled Autistic
I recently purchased several books and a video by Temple Grandin. She is a woman with autism, who has had some amazing accomplishments. Her first book, "Emergence" was a real eye opener for me. It tells of her childhood through adolecence and gives the reader insight from the viewpoint of the autistic person. Most books I have ever seen are written by experts in the field. This is totally different! Lonnie has speech, but still has difficulty expressing herself sometimes. It can be like playing 20 questions getting information from her. She tries, I can tell she is struggling to come up with the right words. The more I read in this book, the more sense I was able to make out of some of Lonnie's behaviors.
