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The hardest thing about autism? It changes every day!

The post below is by Lisa Smith, the mother of seven children, two with special needs. Her son Tate has autism. Lisa blogs about her experiences and can be found on Facebook at Quirks and Chaos or at quirks-and-chaos.blogspot.com.

Recently I have seen a couple of blogs that tried to pinpoint the one toughest thing about having a child with autism. I have never been able to write that one. For me the hardest thing changes.

Some years it was one thing and some years another. On any given day I would probably give a different answer still. And there is a huge possibility that I have not even encountered the hardest thing yet. I have thought a lot about what the hardest things have been and I decided to try to tackle the subject, sort of.  

Before the actual diagnosis, when my son Tate was a toddler, the hardest thing was trying to figure out what was going on. Then, at age two and a half the hardest part was explaining autism to others and trying to get them to accept the diagnosis. At that time I was still on the edge of denial myself. Then there were months of educating myself about autism, the best therapies, and reading everything I could get my hands on. I barely slept. The hardest part for a while was physical exhaustion.

At age three and four the hardest parts were eliminating stereotypic behavior and resigning myself to having teachers and therapists involved in almost every waking minute of my son’s day. Oh, and the cost. The money we were always trying to find to pay for all the teachers and therapists. That was so very hard. Then there was the guilt. My son has siblings. They lost a huge part of their mother to autism. I found the guilt a very heavy burden to bear. I could not be there for so many of the things my children needed me for because their brother needed me more.

At age five the hardest part of having a child with autism was the transition to public school. The early intervention had helped him so much but the special education department of our local public school, could not and would not do the things I thought they should for him. The transition was hard but the years after that were harder. Having your special needs child in the care of someone who you do not communicate well with is torturous. Those three years were awful for me. 

When those hardships were finally resolved, the stereotypic behavior was once again the hardest part to deal with. Sometimes it seemed almost obsessive and compulsive. When we were successful with eliminating a targeted stereotypic behavior, sometimes it was replaced by something worse.

Some days if you asked me what the hardest part of having a child with autism is I would definitely answer, “watching him wrestle with his anxiety.” He is generally a pretty happy guy but it only takes a few seconds to change things for him. His worries are sometimes ridiculous to the rest of us but so real to him.

And always, ALWAYS, hanging over my head is my own anxiety: the worry about the future. What does the future hold for my son? What will happen to him when I am gone? Will there be a place for him in society? Will he be happy? What will become of my sweet Tate? Today, that is the hardest part of having a child with autism. But if you ask me tomorrow, the answer will probably be a different one. 

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.