Well, it's here. Fifteen years ago today, my long-held suspicions were confirmed: my son was diagnosed with autism. He was 2 1/2 then, and I had been screaming, yelling, and begging doctors for two years to see that there was a problem and to help. Now we finally had a diagnosis, so why was I so upset? I was upset because there are some things I hate being right about...and I'll admit that my reaction was one of selfishness. After all, I already had my own hydrocephalus and epilepsy to contend with. How would I do that and add autism to the mix? What could be done for him...and for me? How would I accommodate the needs of my daughter, then only 5 1/2 years old?
When I first got his diagnosis, it was a Monday, and the eval was over the course of several hours split into two days--yes, a Friday and a Monday. All weekend, I was ready to pop!! The waiting was excruciating, to say the least, but now we knew, and it was time to figure out what it meant for him and for us.
Even today, I can't tell you how I have managed, especially since my epilepsy became quite ugly from all the stress in the early years, but I am also proud to say that I live in a state that has superior services for kids with special needs, particularly autism. Although I was still in something of a haze through our few months of Early Intervention, I learned quickly that we had excellent Home-Based Therapy Services (HBTS) at our disposal. I was also assured that Drew would respond well to them.
Even after we got started, my fear seemed to suffocate me. We were several states away from any family, knew few people, and were having to deal with something I had been told repeatedly was "rare." I know parents of newly-diagnosed autistic kids have a hard time grasping that, but yes, fifteen years ago, it was believed that autism occurred in only 1 of about 10,000 kids!! Even then, I knew that seemed to be false, but that was what I had kept hearing, so my pleas for help had fallen on deaf ears, even though my son wasn't babbling, was constantly running away from me, could not stand to be held, and would in fact even arch his back and scream whenever I picked him up...but I, mom of two, eldest of five, and babysitter since age eight, knew nothing. They knew everything, because they were the doctors.
Sarcasm aside, I was scared to death. I knew nothing about what to expect for him and his future. Even the first book I picked up, which was 8 years old at the time, spoke of extremely high rates of retardation and the importance of finding a group home or institution early. It also said that even those who weren't placed in "homes" were on several medications to deal with behaviors and were often very physically violent, not toilet trained, and that their issues often tore marriages apart. I had a multitude of fears about that, too. I knew all too well that medications could cause all sorts of side effects and reactions, and if he had any "invisible" effects, how would I know? He couldn't tell me.
I posed the medication question to his therapy staff and coordinator, who all said to give them six months to get Drew talking and then to determine if medications were still necessary. They did get him to start speaking in short phrases and simple sentences, and my worry slowly started to abate. I was able to communicate with him, and he could do so with me, although there were significant expressive language gaps and remain so today.
I remember thinking what a devastating diagnosis autism was, and I was told by a mom online (who knew personally) that it wasn't. I remember being shocked and hurt that she seemed to be blowing off my anger and fear, but I learned quickly that she was right. There are, indeed, many worse things. Yes, it has changed who I am, taxed my marriage, family life, and belief in myself. I would be lying to say otherwise, but my son is growing, maturing, and learning more every day. He can do so many things for himself and even plans to go to community college to "work with computers." I have no reason to believe he can't. He is increasingly self-sufficient, and although we still have to deal with occasional behavioral difficulties and outbursts, he amazes me every day with what he can do. If he's in the car with me, I never get lost--and I mean never!! He has a steel trap memory. He is friendly, polite, and affectionate. How many seventeen-year-old boys still hug and kiss their parents good night?
I know autism will always be inseparable from who he is, and although I winced for several years at the term "autistic," I do understand now when affected adults insist on using it, and that we not say that they "have" autism. I am learning to listen to all of them and help him become a happy and productive member of the community. I have attended autism conferences and am so grateful to all the adults who have assured and advised me. Temple Grandin, Tony Attwood, and Steve Shore (just to name a few) have been such an amazing asset to the autism community, and I can't ever thank them enough for giving me the confidence and reassurance that my son will, indeed, be happy and learn to make his way as long as I continue to encourage him. Most of all, I accept him and hope that others will, too, because I know first-hand how important that is when you have to deal with a disorder, disability, or medical condition. After all, I have personally lived that experience myself. If he is happy, I am happy.
