Though Nashville and the surrounding areas have thousands of children who have been diagnosed with Autism, a parent may walk out the doctor’s office with a new diagnosis and little clue where to turn.
Some things you should know:
Autism is treatable. Some parents become so obsessed with finding a cure that they forget that they already have a whole child in front of them. On the other extreme, some parents believe that nothing or little can be done. Don’t think in terms of cures but in terms of “How can I help my child become his or her personal best?”
Early intervention is especially important because a child’s brain is especially moldable (plasticity), before the age of 6. However if your child is older than that don’t despair; people can learn new things at any age.
Different ways to treat Autism (not a comprehensive list)
- Speech therapy
- Occupation therapy
- Physical therapy
- Behavioral therapy
- ABA
- Floor time
- GF/CF Diet
There could be secondary conditions so it’s important to see a neurologist, as well as have an EEG to check for seizures. Some seizures can be undetectable but can adversely effect brain functioning. Subclinical seizures can look like daydreaming, where a child is staring “into space” and does not respond when you try to get their attention. This can last for half a second (which is why they are often missed) to minutes.
“Why” is important, but it is not important right now. The question is inevitable, but don’t obsess on it. You have more important things to spend your energy on, like making a treatment plan that works for your child and for you. This will take a lot of research.
Google is your best friend. Yes, it takes many hours of your life to sort through all the information, to find the things that are pertinent and informative and researched. Remember to not believe everything you read, and if you find an interesting “fact” or method, make sure to find corroborating evidence.
Your pediatrician is not necessarily an expert. Remember that Pediatrics is a general field and your doctor may or may not know what she is talking about. If you’re given advice or an opinion that you are not comfortable with, seek out a second opinion. This is true even when dealing with experts.
You are the expert on your child and you are your child’s best advocate. Educate yourself, hire a good therapy team, observe what works and learn to emulate it.
Follow your gut instincts. If you are told to do something or to allow something to be done to your child that makes your insides curl up, you have the right (and the responsibility) to stop it. Several Nashville area parents can recount stories of terrified children, adamant therapists, and therapy that they discontinued. Remember that this is your child. Therapy doesn’t have to be and should not be traumatizing, to either of you.
Every child is different, every case of Autism is different. Autism is a spectrum, and each child can have different aspects of Autism in wildly varying degrees. Forget the stereotypes and the not-so-helpful checklists included in almost every article that has the word Autism.
You will find that a lot of people who have no experience with Autism and no medical training suddenly believe that they are medical experts. Be prepared to have everyone from close family to strangers in the mall question the diagnosis or have concrete opinions about the condition based on a show they just watched or a Facebook comment that they read. If you’re prepared for that then you will be able to consider in advance how you’d want to respond.
You are not alone. When 1 in 70 children are being diagnosed with Autism, there is a very large, diverse, and supportive community of Special Needs parents in Nashville. They are usually very happy to share their hard-earned knowledge and research as well as offer comfort and advice.
It may be tempting to isolate yourself, especially as you are grieving, but you and your child(ren) need the more healthy option of getting support from people who understand.
Vanderbilt's Kennedy Center offers the TRIAD Families First Program. It offers free seminars ranging in topics to help families get a better grasp on living with Autism. For more information go to their website at http://kc.vanderbilt.edu/triad/services
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