We've Had Some Major Wins: An Autism Spectrum Disorder Story

Autism Spectrum Disorder... Those three words are so loaded for me. It has been a LONG road. 

My son was diagnosed on his 5th birthday, 4 1/2 years ago. I've worked with children all my life and I knew something was different about my son. Doctor after doctor chalked it up to being a first time Mom. They said you don't want to take him to a psychiatrist... they'll just medicate him. 

When he was three I finally took him to one. Unspecified mood disorder was the diagnosis. About a year later they added ADHD. But something was still missing. Those diagnosis' didn't quite encompass everything I was seeing. 

That is the problem with high functioning children with Autism, they frequently "fall through the cracks" because pediatricians aren't specifically trained in many cases to recognize autism, and because it is a spectrum disorder no two people with autism have exactly the same symptoms. 
Whether your child has severe autism or mild, they each come with their own challenges.

When we left the Neuropsychologist's office, there were SO many feelings. 

The biggest one, "So what happens now?"

I asked a lot of questions from anyone I could find. I spent a lot of time voraciously reading books about it. 

And then, I had to put the books down. I couldn't handle reading anymore. It was too overwhelming. Besides, I was dealing with epic meltdowns (autism meltdowns are like no meltdown you have ever seen, and can, in some cases, literally go on for hours), sensory seeking, doors being slammed repeatedly over and over again and so much more. 

OT (occupational therapy), PT (physical therapy), speech therapy, play therapy, applied behavioral analysis (when we could get it), became our lives. It's overwhelming and hard for both of us. But we have a FABULOUS team, and that makes a difference. A year later I was able to look back and see clearly that we had made significant progress. 

Social situations I suspect will always be a struggle, this is a hallmark of autism. People who experience autism can learn what to do in social situations. Unlike neurotypcial people where a lot of it is learned by observation, experiences, and just innate nuances, they have to start at square one and be taught every little part of it. It takes time and patience. 

Perseveration (the repetition of a particular response, such as a word, phrase or gesture, despite the absence or cessation of a stimulus) also a hallmark of autism, in a lot of cases can be channeled to make it productive. Your child thinks bugs are the best things ever and cannot (like ever), stop talking about them? He's got a career all lined up for himself with that. I'm personally still trying to figure out how to do that with my son's perseveration- pirates. But something might come up.

There are very hard days with autism. VERY hard days. Days that if I drank alcohol, I would drink just to get through the day. As I don't, I take long hot baths and read or watch British TV (for the accents of course). 

Find your way to cope in healthy ways. You are going to need it, like you have never needed it before. 

Carve out that time for you. It's necessary for everyone's peace of mind.

And now 4 years later- we have had some major ups and downs. 

Things haven't just gone up they have gone down really far down. 

But, at the moment- things are brighter than they have ever been for him. We can understand him when he speaks. He can walk through the sand for a time without getting severely tired and irritated at the sensations it brings. 

Meltdowns have become less common and less lengthy. 

We've had some major wins. 

Today's guest poster is Calleen Petersen. I have known Calleen for six years, and I have watched her son grow up. She is an amazing mother, and has immense knowledge of Autism. If you would like to connect with her, you can contact her at lollielean@hotmail.com.

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