Monday, April 5, 2010

Some FAQs I get about being a parent of an autistic child...

These are some of the most common questions I am asked:

1) How young can children be tested for autism? When was Shelby evaluated?

Well, this is a complicated question. Most pediatricians (at least the ones accepting insurance) will have parents/guardians fill out some type of developmental questionaire when they see the child for well-child visits. The ones our pediatrician has are called "Ages and Stages." These give you a scale to rate your child on for gross motor, fine motor, social, and communication. It is important to answer these honestly because it is for the good of your child. If the pediatrician sees a gross deficiency in an area they will usually refer you out to a specialist for more in-depth testing and diagnosis. From what my pediatrician has told me they most commonly refer out from the ages of 18 months to 3 years, based on the questionaires. Of course, sometimes they refer out when a parent contacts them about a concern as well. Shelby was first evaluated at 18 months for communication delays. She was not found to be autistic at that time. However, when we saw no improvement in six months, she was re-referred and it was showing at that time a much greater delay. In fact, her speech had stopped progressing at 18 months and still has not increased. At that time an occupational therapist was brought in who also diagnosed Shelby with sensory-processing disorder.

2) Who should I see if I suspect my child has autism or is on the spectrum?

First I would contact a pediatrician because they may be able to sort out any confusing behaviors etc. Most states have some type of agency for early childhood development that will provide testing free of charge or bill to insurance. Many larger communities have non-profits that also provide this testing. North Carolina has an agency called the Child Developmental Services Agency (CDSA) which provides testing for children under age 3 free of charge. If they deem your child falls into the autism spectrum or has a significant delay in an area they will qualify for services from the state which are provided on a sliding scale based on household make-up and income. They have negotiated rates with providers that are sometimes lower than an insurance co-pay. After the age of 3, the school system will take over in our state with testing and service providing.

In North Carolina the University of North Carolina has a non-profit calls TEACCH which also offers testing services.

I opted for the CDSA because it turned out the TEACCH center had an over six-month waiting list for testing. CDSA got Shelby in same week. Also, TEACCH is able to offer some limited guidance on service providers, but no negotiated rates or sliding scale as CDSA did.

3) Does insurance cover the services for autistic children?

Check with your insurance provider, but mine did not. Speech, occupational and what is known as CBRS (Community Based Rehabilitative Services) therapy (available for children under age 3, a play therapy that reinforces other therapies and helps with socialization) were not available. Some insurers are also trying to label autism as an educational issue (like a learning disability). Forward thinking states (like North Carolina) are being proactive and trying to enact laws listing autism for what it is: a neurological disorder, in order to prevent insurers from denying coverage to adults and children with the disorder.

4) I suspect my child is autistic but many of my family members are in denial. If my child receives a diagnosis on the autism spectrum, what can I do to help them understand what this means?

When Shelby was first diagnosed, we got her into a playgroup at the local TEACCH center where another child's father was a Marine deployed in Iraq. His wife had to break the news of his diagnosis over the phone. She said he did not take it well. Denial was in full force. The TEACCH center did lots of video-taping of the playgroup to create DVDs to send him to help him feel connected to what was going on in his son's treatment.

Families are sometimes the least accepting of a situation like this sadly. Or worse, they are accepting but try to be "helpful" in less than helpful ways. Someone who googles everything and questions all of your decisions is not being helpful.

One of the best resources I found to help family was the book Ten Things Every Child with Autism Wishes You Knew by Ellen Notbohm.

This book opened up the eyes of so many in our family as to what Shelby was going through and more productive ways they could channel their energy rather than just trying to "fix" her. A young man with Aspergers is quoted in the book from an editorial he wrote for the New York Times as saying (paraphrasing) I'm not broken, I don't need to be fixed. I'm not sick I don't need to be cured. That brought me to tears as it clearly articulated from someone on the spectrum to those of us not on the spectrum how we should approach someone with autism and how we should adjust our outlook.

Also, I would say share your feelings with your family. Jeff and I made very clear that we didn't see this diagnosis as "devastating" or a "setback." We saw it as a tool to help our daughter be "the best Shelby she can be." When family members "act out" after hearing a diagnosis it is often a result of not knowing how to act around you or the child involved. But they will follow your cues and, most importantly, your words.

5) How did you come to the decision to have more children?

We decided before we had Shelby that we would have more than one child. We stuck to that. And we did have Joseph before Shelby was diagnosed.

This is a very personal decision and there is no right answer for everyone. Siblings of autistic children are 50% more likely to have autism. Again, read that statistic carefully. It does not say that autism is genetic. Remember that most complete siblings (siblings with the same two biological parents) are more likely to have the same exposure to toxins in the home because they live in the same home and if their mother lives and works in the same places during both pregnancies can be exposed to the same toxins in utero as well.

We were not going to let a statistic keep us from having the family we felt led to have. And after Joseph was born and shortly after I found I was pregnant with William, Discovery Health ran a special called Autism x6 featuring the Kirtons family from Utah who have six children, all with some form of autism (check for local listings, since this is Autism Awareness Month, it will probably be rebroadcast). Jeff said, "If that family can handle six autism diagnoses, I am sure we could handle at least one more." So far, neither of our boys has shown any signs of autism and have shown promising signs we did not see in Shelby at a young age: looking for our faces, good eye contact, and responding to their names for example. Joseph is showing a few speech issues, which we are having him evaluated for, but is miles ahead of Shelby and is mostly able to communicate in words, phrases and sometimes sentences.

In our case, a "what-if" wasn't going to derail us. But that's not as easy for other people to decide. Please do not judge any family with a child with any kind of developmental delay or an illness in their decision as to family size.

6) Are there any prenatal tests for autism?

The short answer is no. In order for something to be tested, doctors have to know what causes it. We do not know the cause or causes of autism so it cannot be tested for.

And regular readers here will already know that Jeff and I did not have any prenatal testing of any kind for any of our children.

7) Do you immunize your children?

Yes. All of them. Autism will not kill my children. Polio, the measles, rubella...they most likely will. I know two children who died of those diseases because they were not immunized against them. I know 3 who are either blind, deaf, severely impaired or a combination as a result of those diseases. All 3 were not immunized because their parents were afraid of autism.

8) Is Shelby on any type of special diet?

No. Dietary changes may work for some children but rarely work for all. The most common diet restrictions I see/hear about in autism are gluten and soy. Keep in mind that diet is not a silver bullet. A mother of one of Shelby's classmates who eliminated gluten from her son's diet said she always tells parents who ask her that while eliminating gluten has helped her son's behavior, he is still autistic and still requires therapies. His speech did not become perfect as a result and he still has other sensory issues.

If you choose to try and change your child's diet keep in mind a couple of things:

1) Eliminate one thing at a time (for example red dye for 1-2 weeks before trying something else). Eliminating too many things at one time will not give you a clear picture as to what the aggravant is.

2) If you have other children especially, you are better off eliminating whatever it is from everyone's diet. Autistic children know when they are the only one not getting pizza.

9) What kind of support do you get?

I have a great network of other mothers of children with autism that I have met via Shelby's school and the TEACCH center. We have met more parents from the community through workshops offered. I encourage parents to find organizations like Surfer's Healing and others where their child can participate and they can socialize with other parents. While our friends with normally developing children are very understanding and wonderful with Shelby, having another parent who can sign or help with joint compression or deep pressure is a Godsend sometimes.

I am also blessed to have my husband. I do not know how single parents do it with a normally developing child much less one in Shelby's situation.

10) What do you foresee for Shelby's future?

I do not know. Because she is so young and there is still so much to be learned about autism, I try not to think too far ahead. What are we doing for school this year? What progress has she made to date? Those are things I focus on. Will she move into a group home when she becomes an adult? Will she be able to go to college? Those things overwhelm me and are not immediate worries so we don't focus our energy on them.

1 comment:

Lynn said...

Well done. I am so proud of you:)