I am going to be really honest….

Up until two years ago my knowledge about autism was limited. I was completely ignorant to the complexity and spectrum that is autism. I had an “idea” in my head of what I thought it was based of things I had heard and what I had seen on tv.

I was wrong. SO WRONG.

Here are just a FEW things I have learned about autism.

I didn’t know just how broad of a spectrum is touched by autism. You hear about these geniuses that have an insanely high IQ and their discoveries change the world. What you typically don’t hear about are those diagnosed on the other end of the spectrum. The ones that never learn to speak. That will never be able to care for themselves or mature past the age of two.

I had no idea that with an autism diagnosis comes a whole other list of medical conditions. Did you know that individuals with autism are more likely to be diagnosed with additional metal and physical conditions, including but not limited to:

• Gastrointestinal (GI) problems

• Epilepsy

• Feeding issues

• Disrupted sleep

• Attention-deficit/hyperactivity disorder (ADHD)

• Anxiety

• Depression

• Obsessive compulsive disorder (OCD)

• Schizophrenia 

• Bipolar Disorder 

• Down syndrome (DS)

• Chronic constipation

• Abdominal pain

• Gastroesophageal reflux

• Bowel inflammation

I didn’t know what an intense process it is to get a diagnosis and treatment. If you see signs early on your pediatrician might recommend early intervention. If you aren’t familiar with Birth to 3 it is system of services and supports for children under age three who have a delay in their development, or may be at risk of having a delay, and their family. While Birth to 3 isn’t in all states, each state does have it own early intervention program. You can find your states program here on the CDC website. Birth to 3 is free, but your child will need to be evaluated and meeting their criteria. Sometimes you will be put on a waiting list depending on availability.

After Birth to 3 if you want to continue therapy you will need to check your insurance will cover the session and now many they will approve. Not all insurance will cover therapy. If you want to get your child into ABA Therapy you need an official diagnosis from a child psychologist, which will usually have a waiting list to get an evaluation. After you get the diagnosis you will be able to apply for ABA and get put on yet another waiting list. Then wait for the insurance to approve everything. Then have another evaluation with the ABA office. Same goes for any additional therapy such as speech. Everything requires waiting lists, approvals and evaluations. It is a long, expensive process, with no guarantees.

I never knew how controversial it is. Controversy over symbols and colors: Red, Blue, Rainbow, Puzzle Piece, Infinity symbol…. Controversy on the diagnoses and the terms being used. Is it a diagnosis? A genetic disorder? Is it caused because of vaccines or medical treatment when pregnant? Should it be celebrated? Should it be treated? Is therapy good for autistic children? Is it cruel and an attempt to change them? Just google autism controversy and you will be bombarded with articles about the different view points from medical professionals, parents and those that are autistic.

I have learned a lot in the last two years. More than I could possibly discuss in one setting. Everything I’ve shared, I am sure, sounds scary and intense.

It is.

But, in the last few years I have also learned just how important the little things in life are. I learned to appreciate small victories so much more. I have gained a patience I never knew I had. My heart has expanded in the most amazing way. I appreciate every thing. Every day.