This page is for my daughter, Diana Maureen, who was diagnosed with autism in December 2000.

In December of 2000, Diana was diagnosed as having autistic disorder, at the mild end of the spectrum. Hearing the words we'd all been thinking but not daring to say made them no less devastating. However, this does not change who Diana is. She's still the same sweet, quirky child she was a year ago; now we know the some of the cause of her "quirkiness." And we will deal with the other effects autism has on our child with determination.

To other parents who have just learned this about their own children I offer this advice: Don't let yourself slip into despair. Research, read, ask questions, advocate for your child. Make sure the school system (which is required by law to provide services for children with special needs) is doing their job. Here's some more advice: don't take "no" for an answer from your insurance company.

When we learned the diagnosis and recommendations, we took Diana to a clinic that specializes in therapies for children (The Pediatric Place in Palos Heights, IL). They then took all the paperwork and filed a claim with our insurance company. Three weeks later, our therapist got a call saying services were denied, on the basis that "they didn't cover speech therapy for speech and language delay." I was outraged. The therapist was outraged. I called the company. They claimed that they never received the psychological assessment. (Baloney!)

So, armed with a "letter of need" from Diana's pediatrician, the DSM IV's classification of symptoms for autism, a medical dictionary's definition of autism (both of which include speech delay - you can't get a diagnosis of autism without a speech/language delay, it's part and parcel of the disorder), the psych eval (again) and a passionate letter from me (I am not above begging for my child), we sent an 18-page fax to two separate numbers to the attention of the pencil-pusher in charge of Diana's file.

Our persistence paid off. Diana's services were approved, with unlimited access to services. The only condition was that she be reevaluated in a year. Annual reassessments are a good idea, and we were going to have that done, anyway.

"The Truth About Vaccines" is a site that a man has put together with information he's receiving from a doctor researching the mercury/autism link in Germany.

I strongly recommend the following books:

Make sure you let Congress know how you feel about Special Education law and Autism Research.

I have to say this. Many folks have told me that they are amazed at how strong I am. That they're impressed with how well I'm handling this. My mom called me a hero, for crying out loud! I'm not, folks, I'm really not. I don't break down and cry because I'm scared I won't be able to stop. These people (the insurance companies, pharmaeutical companies, congressmen, etc.) are playing god with my child's future. I'm terrified they will win. I'm discouraged and tired and sick that this can even happen. I fight because that's all I can do. I can't make Diana not autistic. I can't wipe away the diagnosis, or the evidence of it I see in her every day. I'm just tired of the endless struggle for a reasonable request for services that will allow my baby to have an independent adulthood when her daddy and I are gone.

Something that I have found tremendously helpful in keeping everything organized (autism generates a LOT of paperwork!) is an accordion file. Diana's file has pockets for:

1. articles I've found about autism
2. a typed list of contacts (doctors, therapists, school phone and fax numbers)
3. school information (school policy information, "when to keep a sick child home" guidelines, etc.)
4. classroom papers (classwork, notes from the teacher, etc.)
5. birth certificate (having a copy of this handy in your child's folder is nice)
6. her hearing evaluation
7. speech evaluation and therapy session reports
8. psychological evaluation
9. occupational therapy evaluation and therapy session reports
10. I(ndividualized) E(ducation) P(rogram)
11. letters and faxes (always keep copies!)
12. clinic information (fee schedule, sick child guidelines, etc.)
13. a special pocket for artwork she's done in school, until I find a way (and place) to display it

As soon as I get home from one of her sessions, or from school, I file away any paperwork I've received. I can lay my hands on any important document in moments, and you can too!

I am compelled to rant a bit here. I just read an article on the Parents Magazine website, "We Cured Our Son's Autism" by Karyn Seroussi. The article was adapted from her book Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery. Both the book and the excerpt printed in Parents Magazine were published in February 2000. There is no cure for autism; doctors are not even in agreement of what causes it, or the best way to treat it.

On Fox News at Nine, May 11th, 2001, there was a doctor from Naperville, IL and his work featured, saying that he'd found the cause of autism. Dr. Walsh at the Pfeiffer Treatment Center is basing his statement on many years of research. But even his intervention through supplements is not a cure. If something is CURED, it goes away. If kids on restricted diets are given milk again, or the parents stop giving them the supplements, the symptoms come back!

I don't want to downplay the importance of research; I pray every day that a cure IS found. But a casein- and yeast-free diet is not a "cure," and it is wrong to call it one. It is an intervention, just like Dr. Greenspan's floortime and Dr. Lovaas' therapy and dozens of others. Until the cure is found, interventions will continue to be the only hope for our children with autism. But a cure must be found soon... we cannot continue to let the numbers of diagnosed children rise, something must be done.

It's a good month to send editorials (like this man did) to your local paper about autism to increase public awareness about this troubling disorder, but awareness should be every day, not just April.

The race is at 8:30 AM at Governors State University in University Park, IL. This was a CARA registered/Gold Cup circuit race. The results are computerized, and can be found online.

***I have come across a really neat book. Mom's Little Book of Displaying Children's Art, by Lisa Bearnson, published by Creating Keepsakes Books (the scrapbook people), ©2000. It's a short-and-sweet book with some really terrific ideas!

There are, of course, thousands of sites online dealing with this topic. Type the word "autism" into any search engine and prepare to be overwhelmed. Visit the links provided by these sites; see what experts suggest you read more about. Knowledge is power. Most cities and larger towns also have support groups for parents of children with autism. There are online support groups as well. You are not alone, and you don't have to hold up the world on your shoulders.

The ribbon used to make the autism awareness ribbons is manufactured by Offray. JoAnn's Fabrics carries it; it's called "jigsaw." Since the ribbon is 7/8" wide, you'll need to split it and seal the raw cut edge with Fray-Check (made by Dritz).

I hope you'll visit this most excellent site.
I wrote an article about autism for it,
and you can find it in the "Side Streets" section.

From babies to adult daughters, you'll find loads of great
information here. From movie reviews to community
support, find out how other parents are Raising A Daughter.

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