This whole concept of autism needs a serious rethink. If autism truly is a lifelong, developmental disorder, then I guess my son is doing the impossible. Either we need to change our definition of what autism is, or realize that many of these kids don’t have it at all. They are instead suffering an immune-based illness.
When I’ve talked to doctors here in Canada about my son and the medications he takes for what has turned out to be a chronic viral encephalopathy, they seem genuinely interested and always want to know more about it. We never use the word autism in our discussions. I’m not sure these doctors would still be listening of we used the A-Word.
It is the medical interventions that have made the biggest change in my son. It’s like his brain has flipped a switch and is starting to function in a much more typical way. He may have had many severe autistic-like behaviors, but the worst have disappeared once he started medical treatment.
At this point he is more typical than not, so I’ll say it again, this whole concept of autism needs a serious rethink. He has that sparkle in his eyes now that every little boy should have, and he is quickly catching up on the many developmental steps that he missed while burdened with autistic-behaviors. At this point and age four; he fits in very nicely with a group of typical three year olds.
We are pretty new on this journey, as my son was only diagnosed nine months ago. But when I think about what we’ve accomplished so far, it is nothing short of remarkable. Back in February, Tyler was in pretty rough shape. He had maybe ten words that he rarely used when he was just short of being three years old. My son wouldn’t respond at all to his name, wouldn’t look at us, and had tantrums two to three times a day. There were many horribly self-injurious behaviors, and Tyler sometimes fixated on an object and would rock back and forth for many hours at a time. We couldn’t touch him or put clothes on him because he was so sensitive to being touched.
I remember thinking to myself, what are we going to do with this child? He was constantly naked, had bruises all over his face from punching himself and head banging, and could only grunt and scream instead of talk? How is he going to live like this?Yet, the worst part for me to accept was that about one year before that, he had been completely normal. He had been happy, active, and affectionate right up to about eighteen months of age.
When we got his official diagnosis of autism in April, I knew right from the beginning that this professional diagnosis made no sense. No, I wasn’t in denial. I knew that my son was seriously sick, but I couldn’t understand how he could be completely normal for the first half of his life then… boom autistic.
Suddenly my job became to figure out what did make sense in all of this. We started down the typical paths, trying GFCF and the DAN recommended supplements. We did see some subtle improvements, but nothing helped the worst of his autistic symptoms. And then one evening in June, at the bookstore, I found Dr. Goldberg’s book, The Myth of Autism. Those words, that title, confirmed what I had been feeling in my gut all along. I read the whole book the night I brought it home, and for the first time in months, I felt validated, and a much-needed sense of calm. You see, by this point, I had read book after book, blog after blog, and every website I could find about autism, but it was only the NIDS theory seemed logical to me. The very next day, we started the diet from the NIDS protocol (no dairy, whole wheat, etc.). By removing things he reacts to, we are helping to calm his over-reactive immune system.
And now, the good news…
There are truly are no words to describe what it’s like to watch your child come out of a coma-like state that you’ve been told is permanent. In six months, Tyler’s language has exploded. He has so many words now that we’ve stopped counting, and he uses them in two to three word combinations all day long. In fact, my son is actually quite chatty. (I sure didn’t see that coming!) He’s even singing songs! Tyler has learned to say his own name, all the names of the people in our family, and wants to greet people and say goodbye to them using their names! He actually looks at us when we call him now. He wears his clothes all day and all night. And no longer fights us when we get him dressed or undressed. His crazy tantrums and self-injurious behaviors are GONE. Tyler smiles all the time and laughs a lot. He plays appropriately with all sorts of toys, and now he always wants me, his dad, or his sister to play with him.
My son’s eye contact is now approaching normal, so much so, that people who only see him on occasion have commented on how dramatic the change in his eye contact has been. Tyler smiles at the camera now, and says, “Cheeeeese!” He no longer crawls up and down the stairs, and can walk them with ease. My son started brushing is own teeth, and wetting his own head in the tub. I now can hold Tyler’s hand now on walks, and he usually grabs mine first! But the biggest success, by far, is how he will spontaneously call out our name, run over to us, and give us a big smile and hug!
Any parent whose child has been diagnosed with autism will be able to appreciate the significance of what Tyler has accomplished in the span of six months. It is as though he’s picked up from where he left off, back at eighteen months old. In fact, now he acts like a typical two year old, and is working through all the developmental steps that would be appropriate for a child of that age. Yes, my son has a lot of catching up to do for a child who is three and a half. Success can happen, but you have to fight the right battle. Tyler is back in our world and happy to be there!
My advice to any parent, who has a child that sounds like my son, is to erase the word autism from your vocabulary, because autism is not what you’re dealing with.