I don't like the "low" part of the word. Janey isn't lower than anyone. She's as valuable a part of society as anyone else. She has much to offer the world. She is an interesting, complex, talented person. As she gets older and Tony and I are better able to understand her, I realize that in so many ways, there are easier parts and harder parts of raising any child at any age. We are used to Janey's harder parts. They are still hard sometimes. When Janey screams all weekend as she did a few weekends ago, when she is in pain and can't tell us how or where, when we need to change her bed almost every night...that's hard. But she's 13, and she has never once said she hated us. She's never made a snide comment in her life. She is excited, thrilled even, by a drive-through trip to McDonalds. Her joy when a song she loves comes in in the car---it's a joy so infectious that I can't even imagine much that is better.
However, she has care needs that are far beyond what most 13 year olds have. She cannot be alone, not for a moment. She is not fully toilet trained. She can't read, write or most of the time talk in full sentences. She cannot dress herself completely.
Janey will never live alone. I used to modify statements like that with "most likely..." but I don't anymore. She is not going to live alone. She will live with us until we are gone. Then...well, that is part of why I want a term that explains Janey's needs better. That is one of the black holes in my thoughts.
The other black hole, one I can barely think about or write about, is the fear of abuse. It is why I no longer think much about respite. I trust Janey's school, and I trust my family, and close friends. But respite, paid respite, is not coming from those sources. And I can't pay enough to have Janey cared for in the way I would feel comfortable with, not in this part of the country anyway. I would want Janey cared for by someone extremely knowledgable both about autism and about her in particular, and I would want there to be a formal backup in place for that person at all times. Caring for Janey is a high intensity job. If the caregiver needs or wanted a break, they need to be able to take one, and that is where I think often the problems occur---either when someone is at the breaking point or when they leave a child in the care of someone else for a bit. Respite for people like Janey needs to be a well-planned, well-vetted, well-staffed situation.
Someday, Tony and I are not going to be on this earth. And before that, someday I imagine a day will come when neither of us can care for her, and her brothers can't either. And that is where it's going to become important for society in general to understand her needs, and of course not just her needs, but the needs of others like her, those on the higher need end of the autistic spectrum.
If we don't talk about the needs of children like Janey, if we focus only on being positive, or only on children who are more able to care for themselves, we can't expect people to understand what her needs and the needs of her peers are. There are those who might say I shouldn't speak for Janey. I can respect that view, but I also respectfully disagree. Although Janey certainly can communicate, she can't do so in such a way that explains her needs. I would rather face my last days in the future knowing that society understood and has provided for Janey's needs than having remained silent about those needs.
Call it what you want to. Call it severe autism, or low-functioning autism, or classic autism. But there is a huge divide between Janey and a child who will someday be capable of living on their own. They both certainly may be autistic, in the wide sense of the world, but at the end of the day, Janey needs a higher level of care, and it is desperately important that those with the power to make fiscal and planning decisions realize that. We need to make society aware that children like Janey exist, and are worthy of the best we can give them.