Last night, Dave and I were attending the Autumn Evening for Autism, one of Quickstart's big annual fundraisers. From what we saw, it was a great success.
But during the speeches, something struck me. Senator Bob Munson was talking about a mom who had to outrun her 14 year old child with autism and call the police to keep the child from hurting her. He said "She shouldn't have had to call the police, she should have been able to call on all of us." As a family.
I think I know what he meant, that the autism community needs to stick together and parents need to share information, etc. But with all due respect to the Senator, that entirely misses the point.
Parents of children with autism shouldn't have to trade tips and secrets. They shouldn't have to rely on other parents and family supports to deal with their children. The government should be supporting families, providing care, treatment and support, just as they would for any other developmental condition or serious illness. Families should be able to access the information and support they need through the healthcare system, from trained and specialized professionals.
In an ideal world, society at large would be able to forget autism. Getting a diagnosis would be like getting a diagnosis of cancer. Not good but it's taken care of. The child would be assessed and treated without the parents having to research, plan and pay for it all. If the government took care of the child, then society, specifically friends and family, could help to support the parents and siblings, and then everyone would be better off and less burned-out.
So while I appreciate the sentiment and intention behind Munson's words, as a parent, I demand that the government stop relying on families to sacrifice themselves to support their children with autism. The fact that we love our children and will do anything to help them to succeed should not be used as an excuse to not help us. Stop treating autism like welfare, only temporarily helping the worst of the crisis cases and penalizing those who are trying to help themselves.
I've heard a lot of speeches about how things are going to change and how politicians want to help us. I've seen spectacular amounts of money pledged. And very little has actually changed. Piecemeal programs, underfunded programs, huge waiting lists and a support system that seems to be unaware of what supports are actually available. Not to mention my personal pet peeve, the income caps on programs that continually tell my family that we are "too rich" to deserve help.
I am very grateful for all the support the autism community has given me and I am more than happy to pass it along to others. But we should never forget that this level of support is necessary because the government is not doing its job to help our children. This is a stop-gap measure of desperation, not the preferable solution.