To give an example of the demands of taking care of an autistic child.
For the last two months my little guy has been getting instances of perseveration, more frequent and more intense. The therapist worked with us to develop ideas to try. You would be amazed at some things to try. Anyway, last weekend he decided he wanted one particular toy. He went on the internet, found the toy, found a picture of the toy and called it up as a photo display. Then he said “that one”. Now, he has almost no verbal skills, so finding what he wanted was pretty good. “That one was said as “I want that.” But, then it became perseveration. It no longer was about wanting the toy but became a skipping record. So, he kept pointing to the computer image and saying “that one,” over and over anywhere from a few times a minute to nearly constant. Not for a few minutes, not for an hour - ALL DAY. It was a major operation to get him to go to the bathroom or to eat because all he could do was skip the record.
Let me reiterate, it was not really about wanting the toy, but the feedback loop that he could not stop.
Calls to the psychiatrist and consults with his social worker (yeah, just another one to work with the others) and he had us stop one of his medicines he has taken for years. Two days and not even a tiny perseveration, so it seems that was the cause. Now, he is bouncing off the walls majorly hyper which I can handle but his impulsive is dangerous and means major cleaning up. So, now we start trying a replacement medicine and try this one then that one and up doses, and maybe a year from now it will finally stop being a big time taker.
Or I can go back to when he was maybe 3 ½ and had no concept of communication. Not just not talk, not understand that there even IS communication. The first thing you need to know is if he can hear at all, because that is how it seems. Now, at this time he was not diagnosed. So, doctors and tests to see if he can hear. So his mother and I work and plan and try and she comes up with trying sign language. I made up a sign for Popsicle and made him use it when he wanted one and bingo, somehow he learned that there was such a thing as communication. Now, it wasn’t magic. His language is small and mostly only I and his mom can understand him most of the time, but he can ask and reply mostly. How do you put a money value on that?
Also, an autistic child is not that until a certain age, I don’t remember maybe 6? Anyway, even with a diagnosis, it isn’t officially autistic until then. And signing papers saying he or she is autistic is major. It is a forever and ever thing that can never be taken away. Even if there was a mistake or a miracle cure over night, he or she would permanently be autistic legally.