Expert: Catherine Ridenour - 9/11/2007

Question
Hi Catherine--my precious little boy, now 6 yrs was just diagonised with asperger's. I'm taking it so hard. I hate that I suddenly study his every movement. I don't want to see this disorder...I just want to see HIM. My friends try to help and offer encouragement, but they don't understand. One friend meant well when she told he he could still have a "normal" life. I don't want him to have a normal life, I want him to have an extraordinary life!! Do you have any advice for me...please tell me it gets better. My son is bright, sweet, loving and will be fine--but knowing that he now has this syndrome...scares me so much. Motherhood is instantely so hard...I worry so much.
As a parent I'd love to hear from you...I want to accept this...so all my engery can be put toward helping my little boy--that I love so much!

Thank you--Take Care

Answer
Hi Kathy,

Your reaction is perfectly normal. There is a period of grief and devastation when we find out our child is not "perfect" by the standards of our society. It's ok to do some crying.

I think the most important thing is to remember that he is still the same child he was the day before his diagnosis. You loved him for himself then and you can love him just as much, for himself, now.

I will not tell you that everything will be "all right." It can be hard to parent a child with A.S. But, it is equally rewarding and he is likely to have a very successful life. I won't say "normal" because there really is no such thing. There are "average" standards. By all accounts, Albert Einstein was not "normal" but we don't think of him as a defective human being or as a failure.

So, where do you go from here? You should do some reading of books written by adults who have high-functioning autism or A.S. I know of three authors who fit that category. One is Dr. Temple Grandin who designs livestock handling facilities, another is Stephen Shore who teaches autistic children through music, and another is Dr. Dawn Prince-Hughes , an anthropologist who came to understand human communication by studying gorillas.

In practical terms, parenting your son will require that you understand he thinks very literally. Words will tend to mean only one thing, he will have trouble understanding figures of speech but he can learn them if they are explained to him. He will take time to understand that other people have thoughts and feelings. He will not read body language, facial expressions or tone of voice like you and I do. The analogy I use is that A.S. people are "socially deaf." None of this means he cannot learn it, only that it will be like learning a foreign language. He will need repetition and practice.

At home, make the rules simple. Do not use physical punishment, it is not very effective with AS kids. Examples: if you break your toy, it will not be replaced. If you hit someone, you will be removed to time-out. Teach basic social skills like saying, "Hello" when you meet someone new but don't force him to interact if he's clearly uncomfortable. AS people experience forced eye contact or touch as painful.

A.S. kids tend to be behind themselves emotionally, by about 3 years. Expect his behavior to seem immature for most of his life but also know that he will eventually catch up to himself as a young adult.

One thing you should watch out for is the tendency to develop a very limited diet. Don't go there. Offer a variety of healthy foods and don't give in to french fries at every meal. The tantrums can be spectacular but stand your ground.

I am not a fan of strict applied behavior (ABA) treatment for AS kids. Do some research on this approach before you buy into it in his IEP at school. Learn the law governing the IEP and the process of setting it up. You are entitled to be present at all "team meetings" and to have a hand in designing his educational plan. You know him better than anyone. Trust your instincts.

I'm sorry this is so long, there is so much to share.

It is likely he is overly sensitive to some things like sounds, bright lights, clothing textures, etc. These things are life-long issues. Adapt his environment as necessary, carry ear plugs or a hat if he needs them away from home.

A few individuals have a condition called synesthesia. This means that their senses overlap. They may see letters in color even though they are printed in black. They may hear sounds when they touch certain textures or smell certain things when they hear a sound. This can be confusing for a young child. It seems downright weird to other people when asked, "What does your name smell like?"

Animals are very therapeutic for A.S. kids. If you don't already have a big, mellow dog, consider getting one. I recommend adopting an adult dog who is already settled down and tolerant of children. Check with your local humane society. Many A.S. kids can form emotional bonds with an animal before they can relate to people. And the dog always loves them no matter what.

Ok, last thing. It is likely he will develop a specialized area of knowledge that borders on obsession. While he needs to broaden his attention over time, it is good to use his interests to teach him. If it's cars, then let him learn through cars. Calculate gas mileage (math), learn about manufacturing processes (science), identify makes and models (classification), study the highway systems (map reading), write car stories (English composition); you get the picture. Childhood obsessions can become adult professions.

Most importantly, take care of yourself. Get enough rest, don't be isolated, eat well. If you think you are becoming depressed, talk to your doctor.

Write back to me in about 3 months and let me know how you are doing.

Here is a list of other Internet resources:

http://www.neurodiversity.com/main.html (many links to books, articles and resources)

http://www.patientcenters.com/autism/news/resources.html (books and resources)

http://www.ninds.nih.gov/disorders/asperger/asperger.htm (the definitions and
government links)

http://www.autism.org/temple/meds.html (about medication)

http://www.autism.org/ (many links to information)

http://www.angelfire.com/pa5/as/asteachersites.html (teaching resources)

http://www.rettdevil.org  (a discussion board for parents and persons with neurological and developmental disorders)

Best wishes,
Catherine